Caden Smith

September 12, 2011 - Tentative Surgery Dates

2011-09-12T13:32:00.003-05:00

Gosh where did the summer go? It’s hard to believe I’m back to work, and fall is near. The Smith family had a busy summer moving ~ yes, we bought a house. Those of you who know us realized we were definitely outgrowing the townhome so it’s wonderful to have a big back yard to let the boys run and play. We moved about 5 minutes away to Crystal Lake, IL.

Although no news is good news we do have some updated information from out last cardiology appointment just last Friday. Caden’s heart function sounded great, he is doing well, and enjoying being back at daycare. He is “working” on potty-training which is definitely a work in progress, and his favorite word is “no”. Hmmm…does this sound familiar to anyone else who has toddlers? I feel his speech is getting better even though 3 weeks ago was his last speech therapy appointment for the year. Now that I’m back to work I can’t get to the office before they close. He is saying his ABC’s and numbers up to twenty (not great, and sometimes not in order, but he definitely enjoys trying).

Back to the appointment…..Dr. Frommelt his cardiologist has a tentative plan to see him in December for an Echocardiogram, in March for his heart catherization, and early June for his 3rd open heart surgery the Fontan. During the heart catherization when he is under they are also going to see what is going on with his paralyzed vocal cord to get a baseline and see if anything needs or can be done. All of these dates are tentative as Caden is going to dictate how/when he needs the surgeries maybe some sooner, but we pray to make it through this fall/winter and get us to the summer. Caden’s color still looks great (not grayish/dusky/blue), and his oxygen saturations are hanging around 78-82 which is normal for him.

After our cardiology appointment we had a second opinion for his eczema which has gotten pretty bad in the last month or so. The doctor prescribed a stronger anti-histamine at night to stop the itch cycle, and a stronger steroid cream to heal his red, tender skin. In the few days we have used the new Rx’s he seems to be better. Once it is healed we hope to go off the creams/anti-histamine altogether. He has battled this since he was little it just hasn’t been this bad. I’m hoping the winter will bring relief as Caden’s eczema seems to flare more in the summer/warmer weather.

From a big boy standpoint….Caden is enjoying having Griffin to play with. They really are great buddies. He looks for him in the mornings, he likes to help me take care of him (until I give the baby too much attention then Caden lets me know it’s “MY TURN “and wiggles his way into my arms/lap and takes over Griffin’s space). We are still working on the word “gentle” but I’m not sure he has grasped that concept yet. We still occasionally find Caden sitting on Griffin, trying to pick him up by his neck, and recently flipping over his car seat while Griffin is in it. I think Caden thinks it’s a little rollercoaster ride for him or something.

We continue to be blessed each day, and thankful for all of your continued prayers.

Love,
Melissa

June 18, 2011 - Father's Day

2011-06-18T13:56:00.026-05:00

Going Fishing….
Feeding the horse in back of my parents house in Marion, IL

Griffin Smith with cousin Victoria Edwards
Grandpa Fred Monroe showing Caden how to fish...

Picking strawberries from my dad's massive garden
Grandma Rita Monroe loving on Griffin (5 months)

These are some recent pictures we took while visiting family in Marion, IL. My dad took the time to take us fishing (my style where he loads up the hook with worms, and then takes off the fish). More importantly, we got to show Caden what fishing was all about. Thanks to the Moore's for letting us use your pond!

Update on Caden: He had a cardiology appointment the beginning on June and Dr.Kovach said his heart sounded good, and we are still set for a tentative Fontan (3rd surgery) in about a year depending on how things go. Caden has lost some weight so we are back on two pediasure's a day to help him beef up a bit. Although he looks like a great size to us and probably everyone else it is important for him to gain more weight before his next surgery. Dietician Julie from CHW also met with us to go over things to try, do to help in this process. She also informed David and I after Caden's Fontan he will be on a strict low-fat diet for 6-8 weeks. Nothing over 3 grams of fat. Yikes….seeing we are doing everything to gain weight nuggets, ravioli, pizza, cheese, ice-cream…..this is going to be quite the change for him. Julie said another reason for his weight gain is because so many of these kiddos lose a lot of weight after the Fontan during those 2 months because they simply don't like lean chicken and fish and vegetables. We asked if we should start introducing those foods to him now but she said we could but again, it's all about weight gain so it's not in his best interest right now. Definitely not looking forward to the recovery of this surgery!!

All in all, Caden is doing well. He has battled a few summer sicknesses which once again almost landed him in the hospital but on both occasions he turned the corner last minute proving he dislikes the hospital as much as we do!

In addition to Caden's cardiology appointent he also had his Hypoplastic Clinic Appointment which compares how he is progressing compared to his peers.

Caden is 27 months
Pulse Ox - 76%

Weight = 25.8 pounds (15%)
Length = 33 1/4 length (10%)
Head = 19 inches (30%)

Bayley Test Score (age equivalent)

Cognitive (play skills) - 27 months
Fine motor - 27 months
Gross motor - 24 months
Receptive Lang (understanding) - 23 months
Expressive Lang (talking) - 21 months

We are pleased with his scores hoping with time the talking will still continue to improve. He still is going to speech once a week.

Happy Father's Day to all you dad's out there! Speaking of fish…to my dad….hope you are celebrating father's day catching lots of big tuna for your special day! Enjoy your trip and have safe travels back home.

Love,
Melissa

Graduating Class Memories... May 22, 2011

2011-05-16T11:11:00.010-05:00

Our high school graduation was this Sunday and these last couple of weeks it has been exciting to see the students wrap up their final days at Grayslake North High School (I am back to work from my maternity leave). It's exciting to see these students graduate but even more memorable because this was the graduating class who were sophomores when we found out about Caden's diagnosis. It's remarkable to look at how far we have come, but at the same time not lose sight of a great graduating class that has really made a difference not only in my life, but in so many others. I still spot the bright blue shirts in the halls that some of these students help create to raise money for our family. I can't help but smile ear to ear knowing Caden is doing great and we are thankful for every day!

This picture was taken in 2009 while we were still in the hospital.

On an even happier note ~ School is done this Friday for us and then I get to spend a wonderful summer at home with the boys!

Love,
Melissa

March 28, 2011 - Pop Rocks

2011-03-22T00:03:00.021-05:00

Happy 2nd Birthday Caden!
Caden (2 years) Griffin (12 weeks)
they must be brothers......that love to stick out their tongue!
Caden coming in for the attack.......it's either the face, head, or mouth.

So Caden turned two on 3/11/11! Although we celebrated with just a little family get-together it was once again a big day to celebrate how far he has come. We have finally started to see some improvements with his speech so after months of months of speech therapy I'm happy to see the key was Pop Rocks. You read right - Pop Rocks. So I'm no expert on language development, but who would have ever thought this fizz/pop candy would be the key to get our boy to start talking more. You might be puzzled just like I was the first day our therapist sprinkled it on a lollipop and twirled it around in his mouth. Imagine what I was thinking.....I'm paying for what? Well, call it a coincidence, call it time, but it works. This candy causes mouth awareness. Awareness as to where your tongue is at in your mouth. It makes your mouth alive as the therapist says. Once she gets Caden to understand where his tongue is he can move it more to complete sounds/words. Although it sounds funny, I'm sure there is a more scientific explanation of this and of course she know how to help him with his speech needs, its not all about this cheap candy, but interesting none-the-less. So, speech is getting better. Thanks Pop Rocks!

As for everything else. Caden is enjoying being a boy and he is ALL boy. He plows into things, over things, on things, and occasionally throws things. There is nothing dainty about this boy. I'm sure all of David's rough-housing has something to do with that. I have enrolled him in a Music and Art class at Gymboree while I'm still on maternity leave. It's a nice way for Caden to have some for himself as we still have some jealousy issues with Griffin being around. These classes are fun for him, and so far he seems to enjoy them.

Caden is weighing in at 25 pounds, in a size 4 diapers, and 2T clothes. We still struggle with mealtimes (me personally) with wanting to do the right thing (let him not eat if he doesn't like the food) versus making other food, or giving him the food I know he will eat. We still supplement with Pediasure in the morning and occasionally right before bed to get extra calories and nutrition.

While I'm still on maternity leave I'm going to enjoy the time with the boys and then my mom and mother-in-law are going to watch the boys alternating weeks until I finish school. A great big thanks to the two of them for helping out for these last few weeks until the school year ends. Although I'm excited to have some adult conversation and see the students, I am a bit nervous on how I'm going to do this with Griffin still not sleeping well. I finally got him on some prescription acid reflux meds so hopefully that will help with the sleeping situation a bit. Poor little man doesn't like to be flat at all so it has made sleeping and night time pretty difficult at times. From what the doctor has said, in a few weeks we should notice a difference in him being more comfortable. Thanks to the swing and the arm of the couch which have saved me most nights.

We continue to be blessed each day. Happy Spring ~ even though it still feels like winter.

Love,
Melissa

March 7, 2011 - No Surgery for now (YEAH!)

2011-03-07T05:03:00.033-06:00

Nurse Julie, Nurse Shelly, and Speech Therapist Angie
Physical Therapist Jackie

We had our cardiology appointment on Friday 3/4 and got GREAT news. Although we didn't get great oxygen saturations there we had been getting slightly higher readings 78-82 here at home. Numbers we haven't seen in awhile. As much as we tried to prep him for when the doctors and nurses listen to his heart and take his oxygen readings he gets so worked up from crying we don't get good readings so they are basing the sats off the numbers we have gotten over the last few weeks at home. Since his heart sounded good, with no concerns with the tricuspid regurgitation at this point they feel confident to hold off on surgery (The Fontan - 3rd surgery) until next summer. YEAH! We knew surgery (heart cath or early Fontan) could be a possibility which would be determined from this appointment so we couldn't be more excited.

We took David's mom Sue up with us to Milwaukee so we could have an extra hand with Griffin. Thanks Sue. It was definitely needed. We got to visit and drop off some auction items to Chris for the Wings of Angels dinner on April 9 (www.thewingsofangels.org) as well and see so many nurses and therapists that Caden had during his two surgeries. We even got to see Dr. Nancy! Always hard to catch and great to see.

Since Caden is approaching his 2nd birthday this Friday I couldn't help but think about this great group here at Children's who have given us this opportunity to share this special day with our boy. You have no idea how important you are to us. You have been with us, cared for our son, and continue to show your support through the years. Thanks!

Blessed again,
Love - Melissa

February 19, 2011 - Brotherly love

2011-02-19T09:29:00.023-06:00

19 weeks
15 weeks
11 weeks
10 weeks
7 weeks - 13.2 pounds
6 weeks old
4 weeks old

Big brother Caden is enjoying sitting on Griffin, putting his fingers in his eyes, and inserting objects into his ears. I think he is trying to tell Griffin he loves him - ha. Here are some new pics of Griffin.

Love,
Melissa

February 3, 2011 - Blizzard

2011-02-03T07:22:00.023-06:00

Caden watching the frontloader move snow off the street
Bundled up to play.....

Fun in the fort - thanks to neighbor Jill!

It's crazy to thing since my last post over a month has gone by. Where time goes! Some of my days seem like such a blur trying to do just "normal" things on such little sleep can make for some challenging days. I'm hoping soon little Griffin will go for longer than some of these 2 hours stretches needing to be fed then things will start to get much easier (which is slowly starting to happen).

When Griffin was released from the hospital on day 4 he dropped below 10% body weight so it was recommended we supplement since my milk hadn't come in. When we did this, Griffin's "suck" changed and needless to say I couldn't continue breastfeeding because I was in so much pain. So, seeing I had such difficulties with my milk supply with Caden I was excited I at least could produce enough milk for Griffin by pumping. Although I'm disappointed I couldn't make it longer than a week, I'm happy I can at least still produce milk for him even if it means even less sleep for me. David and I are thrilled to just be doing normal baby things, with no hospital, filling syringes for medicines, and the constant worry everyday that occurred with Caden. We are thrilled we have the opportunity to have a "normal" baby experience and everything that comes with it.

Speaking of hospitals......how is Caden? Caden is doing good. His oxygen saturations are still on the low side 76-78% . We have a cardiology appointment in early March and at this appointment a decision will be made regarding more surgery or not. In the meantime, Caden is still going to speech therapy once a week. I feel like we haven't made much progress but I guess I'm the one that needs to be patient. The therapist is currently working on Caden and his tongue placement. By using a sucker she tries to get Caden to move his tongue to both sides of his mouth which he currently isn't doing. She said this could be contributing to some of his speech delays. It is possible that his vocal cord paralysis and being right side fed for the first several months of his life might have contributed to this. Either way, we are making very slow progress and with time hopefully more words will come. Right now his only words are momma, dada, baby, Elmo, eat, go, bye-bye, and a few others.

Caden is hovering around 25 pounds where he has been for the last 4 months. The new things he enjoys doing is running, dancing, and imitating his Dad. He does this by holding David's cell phone walking around blabbering something that makes no sense and sometimes even puts David's earpiece in his ear just like dad does. It's so cute!

Hopefully all of you in the Chicagoland area enjoyed the snowfall and managed to dig yourself out. I'll close this post with some pictures of the Blizzard of 2011 and the 18+ inches of snow.

Love -
Melissa

January 5, 2011 - Caden kisses his little brother

2011-01-05T14:04:00.010-06:00

December 28, 2010 - Introducing Griffin Marshall Smith 9lbs - 21.5 inches long

2011-01-04T08:19:00.028-06:00

Caden still a little unsure of his new little brother........

<
Dad and son.......
Proud Grandparents - Fred and Rita Monroe and Sue and Cliff Smith.
BIG BOY GRIFFIN
Our first look at Griffin. Look what my husband did with his hat....?!?!? I'm a swollen as the stay-puff marshmello man
My first look at Griffin in the operating room. Born at 10:23 am; 12/28/10.

Caden is officially a big brother to Griffin Marshall Smith. He weighed in at 9 lbs. 21.5 inches long. I was determined I would have baby before my due date but Griffin decided to wait till my due date when I had a planned c-section. I was in the hospital for 4 days recovering while family watched Caden. We are doing good, just trying to adjust to Griffin's sleep schedule (or maybe I should say lack thereof). Here are some pics taken while in the hospital.

"

December 19, 2010 - Cardiology recap

2010-12-19T03:29:00.012-06:00

Caden's attempt to help us untangle the lights.......

As the holidays are approaching and things tend to get more busy with the upcoming arrival of BS #2 I figured I better finish what was discussed at Caden's last Cardiology appointment last week. As we expected from taking Caden's oxygen saturations at home there would be some sort of intervention in the near future for him and indeed it looks like doctors are going to have us continue to monitor his sats (which are now approximately 74-76) a decline from his normal 82. Surprisingly, with his lower sats his color still looks good (not dusky, or blue), and he seems energetic. What we don't know unfortunately (due to lack or studies) is what happens if these kids oxygen sats stay too low, too long. We are heading back in early March for another check-up and at this time doctors are discussing a potential heart catherization. This will allow doctors to see if the lower numbers are because he has been on/off sick, if collaterals are forming, or he simply is "outgrowing" his 2nd heart surgery (the Glenn) and will need #3 surgery (the Fontan) sooner than later. We also discussed when he is under during this procedure we will have ENT scope his vocal cords to see what they see now that he is a little older and bigger and if there is
anything we can do to help alleviate the wheezy breathing and issues that occasionally arise from his paralyzed vocal cord.

Although the thought of another surgery is scary, David and I have had time to absorb this is going to happen and it's now just a matter of when it's going to happen. The good news is I'll still be out on maternity leave (if they choose to do this in March or early April) so I can be with him as he recovers in the hospital and at home and not have to worry about work.

Speaking of maternity leave......for those of you who are wondering. I am starting to dilate, but obviously that doesn't mean a lot....I am so very, very, very, very ready to have this baby. For all you mom's out there. I am officially not sleeping, swelling, so uncomfortable not even 6 pillows can help alleviate the discomfort. So, as David keeps telling me I can't go into labor now (seeing I would be in the hospital during Christmas). I am ready! Otherwise, doctors will not let me go beyond the 28th (my actual due due.....with a planned C-section on my due date). I work up until the 23rd so I'm just praying to get through these last few days even though my classes are determined my water will break while I'm teaching and they think that would be "cool". They have told me they would get the wheelchair, wheel me downstairs, and have even offered to drive me to the hospital. I'm not sure what is more humermous in that statement.........but it's a good way to end this post.

We are celebrating Christmas today with the Smith side of the family (in the event I wouldn't make it to Christmas) so we are looking forward to a great holiday with family today.

Happy Holidays -
Love - Melissa

December 6, 2010 - Hypoplastic Clinic and RMH

2010-12-11T06:06:00.014-06:00

Smith Family at the Ronald McDonald House 12-2010
Picture of Caden and I hanging on the wall at RMH with other families who have stayed here
Marilyn (the house director) and David in front of the beautiful Christmas Tree inside the living room of RMH

We took two trips up to Milwaukee this week for a Hypoplastic Clinic Appointment (Monday 12/6/10) and Yesterday (Friday 12/10) a Cardiology Appointment. Our every 6 month appointment with the Hypoplastic Team of doctor's and specialists went very well. In comparrison to our last visit. It would be nice to know exactly what is helping him the most but I'm sure it is a combination of his age, being around other kids in daycare, speech therapy, and of course David and I working with him. The therapists were very impressed with his overall scores.

Caden is almost 21 months.....

Bayley Test Scores (age equivalent) he scored.....

Cognitive (play) 23 months
Fine Motor 22 months
Gross Motor 19 months
Receptive Lang
(understanding) 18 months
Expressive Lang
(Talking) 19 months

Although he is still very limited on talking, we continue to work on sign language which Caden is helping cut down on his frusteration. He signs more, milk, water, book, sleep, cheese, and I've seen the occasional apple, and his version of yogurt which I'm trying to teach him but it's rather sloppy.

The only disappointing news we received (that we sorta were prepared for) was his low oxygen sats. We had a seperate cardiology appointment on Friday in which we will post on that later.

I would rather dwell on the good news for now....

After our appointment David and I went over to the Ronald MdDonald Home to drop off more pop tabs and some items we purchased for the house that was on their "wish list". I know most of you who know us understand what a special place this is to us, but I'm not sure I'll be able to explain how gratifying it was to leave that cart full of items. It was better than buying or receiving any other gift! We also got to see Marilyn (the house director) who also has a special place in our hearts.

On our way out we got to see the picture that was graciously taken by Jim Bovin, a volunteer photographer for the RMH. They had framed it and it was hanging on the wall with many other families that have considered RMH a home away from home. It is picture of Caden and I (he was about 3 months old) and we were getting discharged from CHW for the first time. It was so great (Jim) was able to come to the hospital to capture a moment David and I will never forget.

Love to you -
Melissa

Thanksgiving 2010

2010-11-24T15:37:00.000-06:00

Good day all you Caden Marshall fans. Just wanted to post a quick update to let you know how we all are doing. Sitting here I reflect back on the post I put up for last thanksgiving. As it relates to that post we are still grateful and thankful for everything mentioned last year. This year we have even more to be thankful for.

Most of you know that Melissa and I are expecting BS2 (Baby Smith #2) just after Christmas. While Melissa is very uncomfortable right now, and cant imaging going another 4 weeks, we understand how blessed we are to be graced with another child. We are thankful that we have the opportunity to bring another life into this world. We are also very, very thankful that BS2 will be heart healthy as we had all the scans/ultrasounds to confirm this great news.

Melissa and I have so much to be thankful for including our family, friends, doctors, nurses, as well as our current situation where we have the ability to eat and sleep under a warm roof. While we have wants, we currently need for nothing and are very thankful God has planned this life for us. Of all the things we are thankful for we have one that we would prioritize at the top of the list. We are thankful for Caden Marshall and the fact that we get to celebrate another thanksgiving with him.

Caden is an absolute joy and continues to learn and grow. He is so much fun to be around as he is constantly exploring, learning, and getting into mischief. Caden loves testing boundaries and climbing and rough housing. While his saturation levels are lower than we would like to see it does not seem to affect him. He is all boy and a pretty normal kid from all that we see. He is also a loving little boy. He likes to give kisses and hugs and loves to cuddle with mom as she reads him books. I wish you could all see the way Caden kisses Melissa’s belly knowing the baby is inside.. The highlight of my day is when I wake him up at night to give him his medications. I pick up this beautiful sleeping boy to give him his meds, feed him a bottle then I put him on my shoulder and we sit down in the rocker. While I rock him I pray with him and he could not be more content in my arms. I swear that if the chair were more comfortable we could both sleep there all night long. I am so thankful for these moments with him.

Melissa and I are thankful for all your prayers and support and while we can not reply to everyone all the time, please know that your support means the world to us. We are looking forward to the Christmas season and Caden becoming a big brother. He is going to be a great big brother as he is so helpful now and I can see him kicking it up a notch when his baby _____ comes along. We will probably just have to remind him that his dad is the jungle gym and not the baby.

We have a cardiology appointment with Caden on the 10th of December. If we can ask for another prayer that Caden’s saturations don’t get any worse and that they will not have to do any intervention that would be fantastic. Thank you.

“It’s not having what you want, it’s wanting what you have” –Sheryl Crow.

Happy thanksgiving everyone.

David, Melissa, Caden, and BS2

Oct 31, 2010 - Happy Halloween!

2010-10-31T20:50:00.010-05:00

Caden the Chilean miner....

Happy Halloween to all of you! Hope you had a great weekend.

Wonderful Weekend

2010-10-13T20:35:00.009-05:00

Hey there Caden fans. It is Wednesday night on a great fall day and I am writing to tell you about the wonderful weekend we had and give you a quick Caden update. If you live in the Chicago land area you know that we were blessed with fantastic weather over the last week.

Saturday Melissa, Caden and I headed up to Milwaukee to participate in Al’s Run/Walk for Children's Hospital of Wisconsin I use the term “participated” very loosely as we did not actually do the walk/run portion. We registered, received our bib numbers, and got to the starting line yet just did not cross it. As you know Melissa is currently cooking BS2 and she has been uncomfortable lately so we took a pass on the walk portion as just used the day to run into friends and socialize. We were on the fence about going at all but we were both glad we did. The weather was perfect and we got to bring Caden this year to meet/catch up with everyone. Some of this year felt just like the last.

Last year I remember showing up to the race and being overcome with the wonderful feeling of actually doing something that makes a difference and to give back to the place that gave Melissa and I so much. Having the opportunity to walk in solidarity with the thousands of people all out to support CHW was amazing. This year was not much different but it also brought on new emotions. You see when you stand at the start line you see all these people that have aligned into teams that raise money and walk in the name of children, family and friends that have been treated at CHW it can be overwhelming. There are signs all over indicating where their teams muster points are. There are lots of hugs, smiles, tears, and laughing. Some of the teams have these wonderfully personalized shirts made to honor those that have been treated. Team Carsyn (Wings of Angles), Team Braden (Heart of Gold Charities, and Team Neveah (Playroom of Hope) are some of the signs that we are familiar with as their children shared the same HLHS CHD Caden has. Each of these teams had as many as 40+ people walking with them. Awesome, just awesome. Teams walk for the work that CHW does,and will do, as well as the attention they give not only children but the families that sit there and look over them. Some teams walk in support of children that have been successfully treated and other teams walk in the memory of a child (like each of the named teams above) God has chosen to take each of these afore mentioned children home early. Neveah and Braden made it home and God took them as toddlers where Carsyns parents had to leave CHW without ever being able to take their beautiful daughter home. These families have lost more than most can imagine yet they rally their crew around to support CHW. I believe they understand that CHW gave their children the best chance at life. And even though their story is tragic they raise money and walk to ensure sick children to come have that same, if not a better, chance. I admire each and every one of these families and pray that they can find a bit of peace in each of their days going forward. These are the types of great people that walk for CHW. They walk along side other families that may have similar stories, triumphant stories or no personal experience with CHW at all. Being surrounded by all these great people made for an emotional day. A day of sorrow and one that is filled with hope and the understanding that we all were there to make a difference and potentially make the lives of others better through our support of CHW.

Getting in the car I had kind of a weak moment. I remember asking Melissa on the ride over to the summerfest grounds: Why us? Are we lucky? Are we more blessed? Why did He take the other children? We had a good cry and just decided it was Gods plan. There is no other explanation. As I type this Caden is pulling diapers from his basket and placing them on the keyboard of my laptop. I stopped and I hugged him tight struggling to understand God’s plan for the other children and praying for a different plan for Caden. I know that we are blessed to have Caden every single day and that we can not take the next for granted. We live trying to balance hope and fear and a good day is when hope out ways the fear. When Caden has a cold or his sats are low fear may win the day. When we dance with him and watch him explore hope is the winner. I am happy to report that hope wins most days.

Just to wrap up Saturday, Melissa, Caden and I went out to lunch with our friends Julie and Poul and headed home. As always a wonderful time. We were all exhausted by the time we got home.

Sunday was another beautiful day. Caden and I worked outside in the back of the house washing down the siding, sweeping the patio, disconnecting the hose and such. Caden was not much help but he did have fun walking up the small incline in the grass and then running down it. It was funny because one out of every 5 times or so he fell down from his momentum and he and I both thought it was funny. After his nap we got up and headed to the local farm for a fall festival. We had a good time watching Caden climb around and explore and I got to have what is likely my last ear of roasted corn (yum). After leaving the farm we ran into my friend Kevin driving home. Kevin was going to pick up his family to check out the new recreation area that just opened up in Crystal Lake. We decided to join him as we did not want the nice day nor the weekend to end. It was great to see Kevin, Kim and their kids Kaylie and Kaiden. You can see a pic of their family with Caden above. A great end to a great day

This weekend was so good because of the weather but mostly because Caden Marshall was healthy all weekend. The previous weekends he had fighting pink eye, ear infections or some of the other joyful things he picks up at daycare. Caden is anxiously awaiting BS2 and is beginning to realize that Melissa is not hiding something under her shirt. We are looking forward to Halloween and are deciding on what to dress Caden as. I have some ideas but all my ideas make Melissa’s eyes roll. What did she get herself into.

That’s all for now. I hope you enjoyed the pictures above. I know my favorite pirate Allee will ;)

Xoxo

David

September 11, 2010 - 18 months old

2010-09-11T20:56:00.015-05:00

Caden loves the slide......

Grandma and Grandpa Monroe with Caden at a local festival

1st Merry-go-round ride

Grandma and Grandpa Monroe

Caden is doing good. Still fighting a cold that seems to last forever, but all in all, he is good. A few weeks ago he got really sick and his oxygen sats dropped and stayed consistently in the low 70’s. After going to our pediatrician and them following up with Children’s Hospital they decided to put him on nebulizer steroids to help him breath (for his lungs) as well as a steroid (prednisolone –sp?) for his throat to open the airway. Breathing is really hard for him when he is sick especially because of the damaged vocal cord so this medication helps to reduce some of the inflammation thus making his little body not work so hard. It seems to help, and thankfully kept us from making another trip to CHW.

Caden has slowly adjusted to Daycare (after about 4 weeks). Goddard School has a great program, they keep the kids on a great routine, and have lots of fun and creative things for them to do. Usually when I pick him up after work it is their free time to play outside. I must say I was pretty sad and upset when I would peek out the window of his classroom to see him outside, by himself, not playing with any of the other kids and sitting or walking along the fence by himself. My heart just broke! I can finally say he has now “adjusted” and is now playing, giggling, and interacting with the others. Ahhhhh…….a sigh of relief. I have also noticed in the last few days when I drop him off he no longer cries. He walks right over to the other kids and toys and starts playing……oh what a difference a few weeks can make. The only thing I wish he did better now is EAT. I really thought he would learn to eat other foods by watching the other kids, but it’s just not the case so far. Almost everyday I look at his report sheet to read that he ate nothing for lunch, maybe the milk or the fruit but that is it. I get frustrated, but then I remember a lot of these HLHS kids are still on G-tubes and do have feeing issues so perhaps instead of being frustrated I should be thankful at least he does eat something.

We also are still taking him to speech therapy once a week. I really haven’t noticed too much of a difference he only says about 3 words Mamma, dada, and baby consistently. He is however signing a little (about 3 signs – more, cheese, and milk). Hopefully he will pick up more of our signs so it makes him less frustrated when he is trying to communicate. Thanks Tricia for giving me some sign language materials to use with him. We really appreciate it!

As for the rest of us, we are doing good. After fighting some sickness ourselves (David and I ) and myself having to go the ER and be admitted overnight for some shortness of breath, cramping, fever and pain that radiated down my right arm, we are doing fine. Baby seems to be doing great, growing, and now (beside a few weeks ago) my pregnancy has been uneventful (which is good).

My parents made the trip up over Labor Day Weekend to spend time with us and it was so great to hang out, go shopping, go to a local festival, and get some things done around the house. Thanks mom and dad for everything!

Love to you -
Melissa

August 6, 2010 - Door County, Wisconsin

2010-08-06T20:49:00.037-05:00

Enjoying a mini vacation before baby #2 (Donny's Gliddon Lodge) Wisconsin

Riding through Penisula State Park with Caden

Grandma and Grandpa Smith strolling with Caden in Door County, Wisconsin

Sunset in Ephraim, Wisconsin

Grandpa Smith and Caden walking along the waterfront in Ephraim

16.5 mo Playing at the beach...Penisula State Park - Door County, Wi

Penisula State Park Bike Trail - Door County,Wi

The Smith family just returned from a little R & R in Door County, Wisconsin. We headed up for a few days to get away before I start back to work next week and to give David a little time away from work . The last time we were in Door County was ’06 when I went up to complete a triathlon. David and I were dating at the time so its funny now 4 years later to look at how different of a trip it was. I can definitely say I’m not in the same shape being 5 months pregnant, but we had just as much fun. David and I brought up the bikes and we rode through peninsula state park (one of our favorite parks with miles of trails), and even had a chance to get back to Donny’s Glidden Lodge for a nice dinner in Sturgeon Bay (another favorite spot from ’06). Thanks to the help of Cliff and Sue Smith (David’s parents) who also came up with us David and I were able to get out one of the days to bike and go out to dinner just the two of us . Thanks Grandma and Grandpa Smith!!!

This 2 bedroom condo we rented was just perfect….located in Fish Creek, with a nice pool, with a great locked storage space for the bikes and jogger stroller and minutes from Peninsula State Park so we could just ride directly there and not even mess with taking the car.
As for Caden….he seemed to enjoy the new surroundings, beach, and bike-riding and even better…..was healthy with no health issues! Yeah!
We head up to Milwaukee next week Thursday the 12th for an Echo /Level 2 Ultrasound for baby #2 to make sure all is well with the baby’s heart.

Love to you all ~
Melissa

July 24, 2010 - Back to normal.......

2010-07-24T16:05:00.003-05:00

Caden seems to be doing great again. We haven't had anymore issues with his breathing or low sats. He is playing, laughing, and eating again. Whatever caused this is weird, how it comes and goes, but hopefully it has passed and won't happen again. Thanks again for your prayers!

Love,
Melissa

July 22, 2010 - So I thought......

2010-07-22T18:10:00.002-05:00

Caden spent a good chunk of his morning catching up on some much needed sleep, but by mid-morning the spastic breathing started back. Thankfully, only a 5 minute episode. By late afternoon I had to make more calls to CHW to talk with our cardiologist on what to do because now it was lasting much longer, and was more intense. Do I get back in my car and drive up to Milwaukee? Just call 911? The cardiology nurse talked about him having croop but he doesn't have any other symptoms so they think (like before) it really is just a virus that has gotten close to that paralzed vocal cord making it very hard for him to breathe.

Yesterday he didn't even act sick, or remotely looked like he had been in the hospital for the last 2 days. Today, a totally different story. Very lethargic, decrease in appetite, and just acting different. It's weird how it comes and goes so quick. One minute we are playing together on the floor with his toys, the next I'm strapping him into his high chair to try to use the pulse ox machine, checking around asking myself...is my phone charged.....do I have his medicines and important things handy in case I have to call 911 again. Ugggh!

The cardiologist gave us 2 baselines to follow for these next few days. Since Caden's O2 sats are again dropping significantly at times now if they don't bounce back up within a reasonable time (or he turns blue) just call 911 (so now O2 sats in the 60's and 70's are acceptable for a short time), or if we start seeing the breathing coupled with the unconsolable crying/sweating/nasal flaring. The doctor doesn't want to prescribe O2 at this time (as having oxygen sats going much higher than his norm which is 82 can actually do more harm than good). In my mind...it seems like more oxygen would be better, but this is why I'm not a cardiologist (ha). So although I'm so happy to be home, I must say my anxiety is much higher. I have been spot checking his O2 sats throughout the day, praying for less spastic, shortened breathing so healing can occur from whatever it is he has.

Love,
Melissa

July 22, 2010 - We are home!

2010-07-22T05:47:00.003-05:00

We wanted to let everyone know we are home and Caden is doing great. The docs increased his heart medication which seem to stablize his blood pressure and his oxygen sats are now back more in Caden's normal range. We never really found out what happened and why it affected his breathing like it did but they speculate it was probably an upper respiratory virus that caused some swelling in his throat. That coupled with his vocal cord damage caused the respiratory distress and difficulties breathing. Whatever it was it came on sudden, and hit him hard but he is doing well now.

I asked one of the doctors why this happened now and it hasn't happened before when he has had colds in the past but his explaination is that viral infections lodge in different areas of the body and this one was in an area that Caden's body couldn't fight himself without oxygen support etc....I think what is more scary for David and I is how something that seems so small can land these kids in the hospital. Thank goodness for our team of doctors and nurses up in Milwaukee who once again took great care of Caden (and us)!

Thanks for all the love and prayers ~
Melissa

July 20, 2010 - 911/Back in the hospital

2010-07-20T21:28:00.011-05:00

Caden struggled for a few hours very early Monday morning. By 3:00 am I noticed some changes in his breathing. By 4:30 am it seemed to get worse. We called Children's Hospital in Milwaukee and the cardiologist fellow on call after hours was going to call back within 15-20 minutes. Within that time period Caden's breathing became even more short, spasmed, and irregular so we called 911. I grabbed my purse, and ran out the door. Ambulance took Caden to Good Sheperd Hospital in Barrington, IL, and David followed in his car. We arrived, they stablized him, then Milwaukee's transport team came to pick him up and ambulance him up to Children's in Wisconsin(about a 2 hour drive). Children's took blood, ran cultures to try to figure out if he was in heart failure or it was something else. Because Caden's Oxygen saturations were fluctuating so much sometimes down into the 60's and his blood pressure was high 120/50, 130/70 they needed to observe him so they admitted him. We have never seen Caden's breathing like this, so it was obviously scary not to mention what we had to go through just getting up to Milwaukee.

Perhaps David can elaborate on the other details but our experience with the ambulance and our local hospital was NOT GOOD! You shouldn't have to spend 6 minutes explaning to the paramedics what the construct of the heart is in your driveway, and that his oxygen sats are normally in the 80's and that was "normal" for Caden. All in all, we learned a lot, and what we would do differently if we had another emergency. Thank goodness I had a list of all his doctors, their numbers, medications, etc on a sheet on the fridge that we just grabbed. That saved a lot of time as we were flying out the door. It was extremely helpful but we did realize other information we should have on it from this experience. I know we have other "heart" families that read our blog so to everyone who has had to deal with local ER's and not a Children's Hospital have contact information very handy as local ER's are not always comfortable with CHD kiddo's like this, and quite honestly sometimes they just don't know what to do. They don't see many children with this statistically so it makes sense, it's just frusterating for us. Thank goodness David was with me and able to be my sounding voice when I was just frazzled and ready to do anything to get his breathing better. David was forceful in telling them we must call CHW and talk with Caden's doctors. It was quickly decided Milwaukee was coming down to get him. THANK GOODNESS!!!

What has happened in the last 24 hours. Heart failure was ruled out. Although his BNP number (a marker that can indicated heart problems) was elevated to 58 from a previous 9 (about a month ago) this was still in the "normal" limit. We are still waiting on some cultures to come back for various viral infections. Because he is being "tested" for these contagious viral infections we are in isolation (gowns, masks, can't leave our room etc...) to avoid spread of potential airborne viruses to other kids. We highly respect this as we have been on the flipside knowing how important it is to keep already sick kids away from germs, but it is very hard to stay in a room without leaving). David and I stayed with Caden in the room last night as he was inconsolable without us. He was acting more himself today, his breathing is better, but his blood pressure is still high and he still has quite a few dips in his saturations so he gets oxygen as needed. They are tweeking his captipril heart medication which can cause significant blood pressure changes so as they increase his dosage he can be monitored to see if this helps. If it is something viral, there probably isn't a lot we can do. It' just scary that if this is the case (a virus) that he was affected so quick and so fast. There has also been more discussion around his vocal cord and the damage/stridor potentially causing some breathing difficulties. We aren't sure how long we will be up in Milwaukee but will have a better idea probably tomorrow after more tests come back.

I drove home tonight as I have an OB appointment for baby #2 in the morning then I'll drive back after my appointment to meet up with David and Caden. I am very thankful to be sleeping at home (as hosptial room sleeping is non-existant). I'll catch up on my sleep to relieve David when I return as he definitely will need it. It is very hard to keep Caden in this crib, connected to so many wires when all he wants to do is be down and walking and playing. Sorry we weren't able to post earlier...they wouldn't let us leave to use the computers, and our phones were both nearly dead and we didn't have our chargers. I'm grabbing more clothes, and some things to help us out for the next few days in case we need to stay another day or two. Otherwise we are doing fine....will be happy to be home soon. We will keep you posted. Love to everyone, and thanks for the prayers~ Melissa

BABY #2

2010-07-09T18:23:00.006-05:00

Yep, you read the title right. We are expecting baby #2. Caden is going to be a big brother sometime between Christmas and New Years. David and are super excited and honestly a bit nervous too. Doctors have told us it is unlikely to have another child with HLHS however we are aware because we have one child with CHD we have a 7-13% chance of having a sibling with CHD. We are easing our minds and heading up to Milwaukee for me to have a Fetal Echocardiogram done on the baby’s heart in early August (I’ll be approximately 20 weeks and the heart will be formed enough to get a good results). David and I are excited to bring another little one into our life, and very happy with the timing. David and I talked about not having another child for the fear of having this happening again or me being pregnant with baby#2 when Caden would need his third heart surgery but the timing couldn’t have been better.

As for Caden……he is moving…..FAST. Yes, after 15 ½ months he is now walking and is non-stop.

Lastly, and for the best news Caden had a great Cardiology appointment today. His saturations were back up in the low 80’s where they normally are, and no surgery is needed now. Dr. Kovach felt it was most likely was a viral infection (the spot on his lung from previous blog) and that just needed time to clear up. We don’t have to return for 3 months!! Thanks for all your prayers. God listens. Love,Melissa

June 21, 2010 - Speech therapy and Tot Swimming

2010-06-21T21:03:00.010-05:00

Caden has officially started his weekly speech therapy and tonight was his first swim lesson (if you can call it that). Since we had a referral for speech from Children's Hospital in Milwaukee we just decided to go privately to get the ball rolling to get him caught up vs. wait the 35+ days that the Birth to 3 program can take. This way while I'm off for the summer I can take him, work with him, in hopes to get him caught up. The first appointment was primarily an intake appointment but the therapist did agree Caden fell into the 6-7 month mark for some expressive language. In addition, another recommendation from Caden's Hypoplastic clinic appointment in Milwaukee was to help strengthen Caden's core for walking/standing. They recommended the pool. We started a parent/tot swim class tonight(more like splashing around) at an indoor health club. David got in the water tonight with Caden while I watched and snapped some pics with my cool new camera. I'm not sure who had more fun David or Caden but nontheless, Caden seems to be having a good time.

Thanks to the Petska's for letting us borrow their pulse ox machine to monitor Caden's oxygen sats until our appointment in early July. We have noticed a few times some sweating while Caden is eating so it is nice to have on hand to ease our nerves.

Oh.....and we broke the pacifer this past week. We are officially one week WITHOUT the "nuk". Yeah! One of David's friends is a pediatric dentist and recommended to wean off the "nuk". This might help his 2 front teeth drop down. So.....we wait and find out if this works. We needed to get rid of the pacifer anyway, but I think we were just trying to avoid the all the crying that we knew would occur. Thankfully, it was just a few long nights!

Love to you all, and to all you fathers out there. Happy Belated Father's Day.

Melissa

June 11, 2010 - Collaterals or something else?

2010-06-11T06:26:00.017-05:00

Hi. I wanted to write so that friends and family could stay updated. Although David understands this much more to explain but after he took yesterday off work he is playing catch-up back at work so I'll try to do my best.

We headed back up to Milwaukee, Wisconsin from Illinois to follow-up on what was discouraging oxygen saturation levels (76%) from a hypoplastic clinic appointment we had just two days ago on Monday. Hoping it was just a "bad" day and the saturations would be higher today. Unfortunately, not the case. Caden's oxygen saturations are still currently lower hovering around 76-78%. They used to be around 82-84% which was normal for Caden and his HLHS condition. Dr. Kovach and Dr. P.Frommelt ordered chest x-rays, and blood draws (oh..not so fun in conjunction with a missed nap!!!).

Some possible explanations for the lower sats were:

1) Collateral veins are forming (These extra veins can grow. It is the bloods way of finding a way to relieve the extra pressure in the circulatory system by creating its own pathway directly back to the heart). Since it is the "return" blood it is deoxygenated going directly back to the heart (bypassing the pulmanary artery which takes blood to the lungs to be oxegynated)this may "likely" be the reason for the lower sat levels. The intervention for this would mean a trip to the catherization lab for Caden where they would insert little metal coils which would act as plugs over the collaterals thus eliminating the new pathways created by the body and increasing the saturation levels again. This intervention will buy us time until Caden receives the Fontan operation.

2) There was a little spot on the chest x-ray they want to monitor. Although his chest x-ray looked better than one previously on record.

3) His paralyzed vocal cord from the Norwood operation (1st surgery) is causing Caden's stridor (noise during inhalation) possibly this is working his system to decrease his sats.

4) He is just starting to outgrow the "Glenn" heart procedure (2nd surgery).

Late last night Dr.Kovach called us to confirm his blood work and everything looked great so what does this mean? We wait. We are heading back in about a month to check sats again and see if anything else has changed. If it is indeed the collateral veins forming his sats will slowly continue to drop. After the sats get down below 74% interventions need to happen (which isn't that far away for Caden) otherwise your at risk for lesions forming on the brain which can cause brain damage. These collaterals (according to the cardiologists) can be common in HLHS kiddos post Glenn surgery because of pressures in the body (although not a good thing). We are aware too that these collaterals are a cause for some of the CHD kids to go into heart failure, or need an early Fontan (3rd heart surgery). We are not to this point, but are scared nonetheless. The good news is Caden looks great. He isn't blue, has a great pink tone to his skin/nails and is still eating great. He is just more fatigued and sleeps more.

David asked if we should get a pulse ox machine (like we had when we first came home to measure his O2 levels) but the cardiologist said we would drive ourselves nuts and become obsessesd over it so he told us just to wait till our next appointment to check the sats. David and I know if the sats go too low he will get gray/blue cast to his skin, lips and nails so we will use that as our basis for the time being.

So we wait......and pray that in a month the sats are higher so nothing has to be done!

Although it was a very long 3+ hour appointment with the other testing Caden did great and crashed once he hit his carseat. We headed over to the Ronald McDonald Home across the street to drop off more pop tabs (thanks again for all who save for us). We had 2 boxes and lots and lots of baggies of tabs. We of course then got a chance to talk with Marilyn (the house director)which is always great then headed back home.

I wish I could say Caden could catch a break.....but we have a regularly scheduled 15 mo. check-up today in Crystal Lake, IL (his pediatrician) for shots. Three doctors in this week alone.....poor little man! Tommorrow is a new day. Thanks for all your love, support and prayers. God is good.

Love,
Melissa

June 10, 2010 - Unexpected Oxygen Saturations

2010-06-10T07:43:00.007-05:00

Hi. Monday's appointment on 6/7 up in Milwaukee for Caden was a little disappointing. At the hypoplastic clinic appointments you meet with Occupational Therapists, Physical Therapists, Speech therapists and the doctor who works specifically with congenital heart kids. All the therapist have there scales in which they rate him on various skills and tasks. The highlight was that he isn't too far behind except for Expressive Language.

Caden is about 15 months and they rated him:

Growth
22 lbs (yeah!)
30 3/4 length
18" head size
Bayley Test Scores (age equilvalent)
Coginitive Play - 13 mo
Fine motor skills - 12 mo
Gross motor - 11 mo
Receptive Language - 13 mo
Expressive Language (talking) - 9 mo.

All in all they weren't too concerned except for the expressive language. They would like us to get him started in speech thearpy to get him caught up in the meantime. We orginally had the birth-3 program come out when Caden was a baby but I think we are going to choose to go to an outside therapist as the process is so delayed and I would like to get a jump-start while I'm home for the summer. Caden still isn't walking but they said that was from his weak trunk strength (which they weren't concerned or surprised). The bad news of the appointment is that Caden's oxygen saturations are lower. Caden normally ranges between 82-84%. You and I would range between 98%-100%. Caden's oxygen saturations had fallen to 76%. This could explain the extra fatigue we have seen with Caden or possible it is something else. Obviously David and I are concerned because the first thing that comes to our mind is more surgery because something isn't working with his Glenn heart procedure. We are hoping to hear other news as the cardiologist wants to see Caden this week so we are making a trip back to Wisconsin today to find out what this means for Caden. We will keep you posted.

Love,
Melissa

June 4, 2010 - Grandma and Grandpa's

2010-06-04T22:11:00.010-05:00

Caden's cool new little chair Grandma and Grandpa bought - 14 mo.
Grandpa Fred giving Caden a little lesson in gardening...
I think Caden was interested in the Garden discussion....

Hi. Caden and I took a quick trip home to Marion to visit the family. It was short, but it was very nice. I've been battling a cold or something for over 2 weeks now and I've managed to give it to David and Caden so although we felt a little under the weather it was nice to relax. We are heading back to Milwaukee on Monday 6/7 for a Hypoplastic Clinic apppointment and we have rescheduled a cardiology appointment with Dr. Kovach for July instead of September after discussing Caden's fatgiue to the doc he wants to doublecheck his Captipril (heart medication for afterload) doesn't need to be increased with his weight gain. Caden looks great, acts great, but seems to sleep a lot more lately which is just "different" for him. I would just think it is normal "growing spurts" but the doctor wasn't convinced it should be lasting more than 3 weeks so other than the fatigue Caden is doing great and I'll end with a few pics of our trip home to Southern Illinois.

Love,
Melissa

Going Good

2010-05-28T11:11:00.008-05:00

Father and Son - 14 mo.
Caden watching one of dad's baseball games - May 2010
Dana's daycare is officially over. Summer is here! I'm so sad she is moving. Thanks for everything Dana your the best.

Hey all. I know it has been a very long time since we posted but that should be interpreted as "no news is good news". I am happy to confirm just that.

Caden Marshall is doing very well. He is eating well and getting around pretty good. I know he is very close to walking and it is fun to see him move from one thing to another. He has started to climb onto our ottoman table which is fun to watch. He did it the first time for my parents when they were watching him. I did not believe it when my dad told me but Caden showed me himself shortly thereafter. It is funny to watch him as he is so determined. He uses everything to get traction to get up there. He plants his face and hands and then lifts his little leg up there and struggles and grunts his way up there. I love watching him grow and try new things. I am hoping he is not that big of a daredevil as he grows but boys will be boys.

We had a great check up a while back and dont have to return to CHW for another one until September. We would have loved to hear that his heart function is improving but we did not. We did hear that his heart function is not decreasing so that is welcome news on its own. We go up at the end of this month to update his developmental study to see how he compares to his HLHS peers and also his "normal" peers. We feel he is a bit behind but pray that the gap can be closed.

Last Saturday Melissa and I went up to CHW for a Parent Education day. This day is for parents with "heart kids". It was a good day to learn and reconnect/network with families that have walked a similar journey. The highlight of the day was the breakout sessions with parent of kids in the same age range. Just meeting and discussing approaches that have and have not worked was very beneficial to us. I know I have talked about how sometimes we felt alone in our journey but this was a room full of people that are walking a similar road. Melissa and I have a close group of friends (which we love) yet there really isn't anyone that has been through what we have so it is nice to meet and talk with people that can really relate. Its not that our friends dont offer the opportunity to talk but you know what i mean.... The emotional part of the day was when they showed a quick film talking about CHD highlighting a sample the kiddos that CHW has treated. It was wonderfully put together featuring photos of the CHD kids, appropriate music, and heartfelt messages/statistics. The photos highlighted those that have been treated and are still with us as well as those that have earned their angel wings. The video was emotional for Melissa and I for a couple of reasons. Seeing the photos they showed of Caden Marshall, provided by Melissa, brought us right back to that moment in time. Its funny how quickly your heart and head can go back in time instantly as a result of a visual reminder. They used a nice selection for Caden. From the first surgery and all the machines to the happy Caden Marshall we have today. For me, seeing pictures of those that did not make it really hit hard. Some of these kids were older than Caden is today when they earned their wings. It was a hard reminder that raising a child with a CHD does not come with a guarantee of time. That we need to do everything we can to enjoy the time that we have with Caden. I think Melissa and I are doing pretty good at this.

Melissa officially started her summer break and has been spending lots of time outside with Caden. He loves his little water table and the plastic pool we have. I bought Melissa this new fangled go go gadget camera she wanted so as soon as she figures out how to download the pictures onto the computer we will post some.

We are headed out with some good friends this weekend to enjoy their company, the weather, and free lodging. We are looking forward to relaxing and just hanging out. We hope you have a safe and enjoyable holiday.

DMC

April 20, 2010 - Updates through pictures

2010-04-20T20:34:00.018-05:00

Caden's first time to the zoo (Phoenix, AZ)
Cousins ~ Melissa, Riley Monroe, Shannon Monroe and Caden (at Riley's soccer tournament game in Arizona)
Ryan Edmiston (my cousin) and her little 3 month old Taylor
Caden's first experience in GRASS! He is enjoying my brother's backyard of fun toys (Mesa, AZ)
Eric Monroe (my brother) and Caden at the Spring Training Cubs game in Tempe, AZ
Father and Son hanging out at the cubs game (Tempe, AZ)
Fun day = tired little boy
Janelle and Jackson Monroe (my brother's wife and their son) Phoenix Zoo
I love this face....3rd attempt at ravioli
I love this face more...

Caden is doing great, finally getting the front TWO teeth...slowly...so he doesn't look like dracula. He isn't walking yet, but definitely pulling up on everything. The CHW dietician Julie S. has him on pediasure for two feeds a day so he will continue to gain weight and so far it's working. Caden is weighing in now at almost 22 pounds. Otherwise, we are exploring new foods, new textures, and just having fun being messy and throwing food on the carpet which drives David absolutely crazy! We are thankful each day God brings to us, and the blessings he continues to give our family.

Love to you all ~ Melissa

Happy Easter

2010-04-05T07:29:00.002-05:00

Melissa, Caden and I wish all of you a very happy Easter. While we sit here on one of the most significant Christian holidays we think back to where we were a year ago today... We have come a long way with Gods blessings. He continues to provide for us. We are thankful!

Today is a windy but beautiful day in Chicago land so we took Caden Marshall for a little walk. Enjoy the video clip.

DMC

Caden Holding Steady

2010-03-24T09:48:00.002-05:00

Hey all. I thought I would put a quick post up letting you know how Caden Marshall's appointment at CHW went last Friday (3/19).

Caden Marshall is doing very well. His heart function is holding steady. We would have liked to see a bit of an improvement but it is more important that the function is not decreasing. His blood flow looks good and there is no material changes to his tricuspid valve regurgitation. As a result there was no recommendation to increase his dosage of captopril. This is all very good news. Caden Marshall has not been gaining as much weight as they would have liked so Melissa had a sit down with the dietitian to get some methods for increasing his weight. We are confident that they will work as he is already taking to the new items that were suggested we introduce. Julie the dietitian from CHW really knows her stuff and these CHD kiddos! Caden is in the 14 percentile for weight and the 47th for length.

We spent most of the day at CHW as they had to sedate Caden to get a good look at his heart through an ultrasound. After being fussy (he knows when he is seeing the doctor now and is not a fan) he fell asleep with the help of an oral sedative. Funny thing was, when he woke up it was like he was drunk or something. He was weaving back and forth while he was sitting there. He looked at everyone like they had two heads and appeared to be unsure of his movements. It was kind of cute and funny. When we got him home he was still out of it. He was having trouble with the mechanics of crawling and would forget to put a hand down and land on his face. Melissa and I made sure he stayed on the carpet, instead of the hardwood floors, for that reason. Caden Marshall was back to himself by Saturday.

One last note. Caden is all boy. He has two cars and a brand new bus that he just loves to push around. The rougher you are with him the more he laughs in delight. As a dad, this is a blast.

That is all for now. Thank your for your continued support.

David
XOXO

Special Prayer Request

2010-03-17T11:18:00.003-05:00

Please pray for our friends the Petska's today. Pray for God to guide them and find them some peace. One year ago today their son Braden earned his angel wings from complications related to HLHS. Braden was 2.5 years old. Pray hard, these are wonderful people.

Caden Marshall Smith is One Year Old

2010-03-14T15:27:00.002-05:00

Hey blog readers. As you probably know, Caden Marshall is now one year old. We celebrated with a low key family party that was nice. It has been one heck of a year which Melissa captured beautifully in her last post. I thought I would put quick post out there with some of my Caden observations.

Caden Marshall is doing really well right now and is very active. He is crawling all over the place and has even learned how to climb the stairs. YEAH! Some of his favorite things to do: He loves to throw down his hard plastic ball and then crawl after it. Repeat. Repeat. When he gets tired of the ball he crawls over to the cabinets and opens and closes then eventually he reaches in and pulls out the pots and pans. He is funny! Caden does not have a lot of tolerance for open doors. If the bathroom door is open, he closes it. When we are upstairs and a bedroom door is open, yep you guessed it, Caden closes it. Caden is pulling himself to a standing position on everything from a pant leg to the ottoman table. He takes steps around the ottoman table to get to what he wants on the other side. Caden Marshall loves the remote control almost as much as his dad does. The funny thing is that we have a remote that controls nothing that we gave him yet he wants nothing to do with it. I think he knows it controls nothing so he does not want to waste his time with it. When the TV is off and the remotes are put away, Caden makes his way over to the TV and turns it on. Then off. Then on. Repeat. Repeat. He knows that he should not play with the TV and gets a grin going when you catch him. Caden loves to be chased by me. I announce I am coming to get him and get on my knees and he turns and crawls away until I grab him. I roll around with him and say "I got you" while giving him kisses and he just laughs and laughs. He loves to be tickled on the legs and is tickled by kisses to the chest. He has such a wonderful laugh. All and all Caden is a wonderful boy. He wakes up happy in the morning and goes to bed for naps and the night without much of a fuss (most of the time). He loves to be read to by mom and loves the bath especially when he shares the bath with mom. Caden Marshall has 6 teeth at my last count which means there is probably 8 or so in there by now. We have a check up next Friday where we hope to receive more good news on his heart. Until then, thank you.

David

March 10, 2010 - HLHS over the year.....

2010-03-10T21:31:00.039-06:00

How time flies…..a little over a year ago David and I were heading to Milwaukee, Wisconsin to check into Froedert Hospital (adjoined to Children’s Hospital). I remember packing my huge bag of clothes and necessities to get me through 3 weeks up in Milwaukee (the length of time we were told we would be in the hospital post Norwood heart surgery). As I reflect on so many things that transpired, I thought I would share a few I’ve been remembering as Caden approaches his big first birthday tomorrow.

I was nervous, sitting at the Bluemound Café in Milwaukee with David getting my last meal before I started the induction process the evening of March 9, 2009. As I waddled to the table and remember thinking all the things I had read and heard from doctor’s. Your son might not be crying when he is born. He might be blue in color, and you will only be able to hold him for bit before they whisk him away to start the medication to keep the PDA (Patent Ductus Arteriosus) open. Without this medication, infants enter a state of shock and pass within a few weeks of birth. As strong as I was, I was riddled with fear. Scared of the future we were about to embark on. I was worried about everything. Needless to say, David and I took our time over dinner….so much time the nurse called to ask where we were. Oppps! We arrived and checked in to find a note at the check-in desk at Froedert Hospital. It was from my old boss Greg Groth from Grayslake Central High School who hired me 12 years ago. He had been waiting, and waiting, and waiting. He actually waited for over 3 hours (if this tells you anything about what a special guy this is). Although we missed his visit, he left a folded note with a small gray rock on the top. The rock was a prayer stone. Greg carried this rock in his pocket for years and was graciously passing the rock onto us so we could hold onto hope and love for the days ahead. Greg, if your reading this – thanks.

So things didn’t go exactly like I had planned having a C-section, but that was the least of our worries at this point. Caden was beautiful, he was PINK, he was crying. Tears dripped down my face. I was so happy yet so scared. The diagnosis was correct. He was born with Hypoplastic Left Heart Syndrome (HLHS)with severe left ventricular hypoplasia, aortic valve artresia, mitral valve artresia, and mild/moderate tricuspid value insufficiency.

As I got settled into my recovery room, I rested a bit, then was anxiously excited to be reunited with Caden in the NICU. David wheeled me down, I remember the dim lights, the soft voices, the calm atmosphere. I remember wanting to stay longer but I was in so much pain. I needed to be wheeled back up for more pain meds so they could swipe my wristband ID to get what I like to call the feel good pills. I guess it takes someone to feel so helpless to really appreciate someone. This is when I realized how wonderful my husband was. He did everything for me. He was sleeping on what they called a "comfortable couch" in my room, the night before he slept on what they called a “comfortable chair” . He got up for anything I needed, supporting not only my surging hormones, my extreme pain (from c-section), but the fear in a few days the most difficult of all the sugeries for Congenital Heart Defects would be performed on Caden. He was just as exhausted as I was yet he was my rock, he was the got me through not only the next few days, but months ahead. Thanks David! I love you, and appreciate everything you did, and continue to do for our family.

Luckily, David and I had looked at pictures of other babies who had gone through the same surgery, I don’t think anything can prepare you for walking into a room with your baby hooked up to so many machines no matter how many pictures you see. I remember just staring…at everything. Listening to everything, there were so many beeping machines, alarms, how can anyone stay in a room for hours listening to that? Well, it’s funny how after time you forget all the alarms, beeps, and noises the machines make, and somehow it just fades into the normal sounds of life. Besides all the noise, Caden had two round the clock nurses at his bedside (Melissa and Suzi), and a cardiologist (Dr. Rao) sitting in a chair starring at the monitors watching for any sudden change that would warrant immediate attention. I remember David asking Dr. Rao how long he (Dr. Rao) stays and stares at the monitors and he said…..it’s a good thing when you see I’m gone.

It’s amazing how vividly I can remember specific events, days, hours, minutes of his hospital stay. I remember how many times I cried walking up and down the halls to get to the breastfeeding (pumping rooms). How I was so angry that the one thing I could provide our son, I could barely produce (milk). The stress, the hormones, the pain, was causing my breastmilk to be almost non-existant. I remember sitting in the room one evening and there are 3 other rooms (spaces)partioned off with curtains for mom’s to go and pump more privately. I could hear another mom crying next to me….I wondered….does every mom who ‘s baby is sick and unable to breastfeed go through this. It took a long time before I could wrap my head around all of those feelings too . Then, there was the rollercoaster ride. The daily grind of hospital life, the day in, day out frustrations of Caden not eating, throwing up, infections, PICC lines, new medications, dropping saturation levels, the list goes on and on. I started to count down the days until we could go home…we were told approximately 3 weeks. The days turned into weeks, which turned into months. We spent birthdays and holidays in the hospital. This was the hardest thing I've ever had to do.

Over the months what I never realized was how hard it was to care for a sick child. What so many other parents out there now were doing and I had no idea. I never understood. What a different outlook on life I have now. How I now cherish everything and never take things for granted. Walking back each night from the hospital to the RMH. We watched the snow melt, and spring flowers start to bud. I would see parents strolling their babies for a walk outside and start to tear up wondering “why me”. Why couldn’t that be us. Life seemed so unfair. My stroller wasn’t even out of the box at home and Caden was almost 3 months old. I guess it’s those things that made me appreciate everything. Just seeing a little smile, or when he squeezed my fingers. What a great feeling.

What about the familiar faces day in and day out. All the other families you saw every day, wondering what they were thinking about, and how they could do it. I knew if they could do it so could I. The families we met not only at the RMH but the families on the cardiac floor. The nurses that cared for Caden were amazing. I spent more time with them than I did my own family. How close you become with them, how truly amazing they are at not only helping Caden, but reaching out to David and I by lending an ear, a hug, or just the right words. Forever I am thankful. It’s funny how just over a year ago I didn’t know what Hypoplastic Left Heart was, I didn’t really know all that the Ronald McDonald home did for families and now it is my life. My life has changed for the better. I would never want to relive it, but I do appreciate what this experience has brought into my life. I went from having my regular ob-gyn to deliever Caden to having so many more doctors with so many specialities. The perinatologist, cardiologist, neonatologist, profussionist, cardiothorasic surgeon, intensivist, speech therapist, physical therapist, dietician, lactation consultants working with us day in and day out. At least now I know what they all do.

This experience has given me a deeper appreciation for life, people, and reaching out to others. I hope someday we can help other families who are just finding out about a similar diagnosis. The scary rollercoaster of emotions you go through, the disappointments, the frustrations of hospital life, the things you miss the most. Although each situation is different, I hope to someday be able to give back to someone like so many of you have done for us. As the days go by I am blessed to have our fighting son Caden with us today sharing life together. Although I am plagued at times with fear of his future, the meds, more surgery, and someday a new heart, and am forced to see how God has created such a gift for David and I. A gift of life, our son. Thanks God for guiding us, giving us strength, and lending a hand when we felt like we were going to fall. You never left our side.

As I reflect…on the good, bad, and disppointing..I am smiling because at 4:58 pm tomorrow 3/11/09 our son will be ONE! God is good.

Love,
Melissa

March 10, 2010 "Wings of Angels"

2010-03-10T19:57:00.018-06:00

Heart Moms: Michelle Buchmann, Me, Teri Danstrom, and Ann Hoesly
David, Nurse Heather, and Melissa
Dr. Nancy Ghanayem and David
David, and Dr. Hagen
Jackie (Caden's Physical Therapist at CHW, and me)

On Saturday 3/6/10 David and I headed up to Milwaukee to attend Chris and Michelle Buchmann’s “Wings of Angels” Endowement fundraiser/auction in memory of their daughter Carsyn. This event helped raise money and awareness of Congenital Heart Disease. There was over 250 people who attended including other heart families, friends, doctors, nurses, therapists. The event was such a huge success raising 32,000 dollars! This money will help build a much needed healing garden a place for families to enjoy time outdoors in their time of need. Chris and Michelle and so many of their amazing family and friends put together an unforgettable evening. Thanks for bringing all of the heart families together and sharing this event all in memory of Carsyn Presley Buchmann (May 22,2009 – Sept 14, 2009). She will never be forgotten! I can't believe I didn't get a picture of Chris and Michelle together that night, but I did capture a few other great pics.

Love,
Melissa

Feb 28, 2010 - Happy and Sad

2010-02-28T20:32:00.010-06:00

Hi! I’ve got some happy and sad news. No, nothing is wrong with Caden. My good friend Dana who has been watching Caden while I’ve been back to work is moving to Arkansas. I’m soooo very sad not only to be losing a great friend, but because she is so good with Caden. Her husband Chris got a job promotion (Congrats Chris!!). As sad as I am, I am also very happy for their family for all the new beginnings in a much warmer state (and just when Dana was learning to use the snow blower - ha). I’m not sure she will ever know how grateful I am for her. I love you Dana!

When you are in the midst of making lots of decisions it is so hard to wrap your head around how everything is going to work out, but God always has a magical way of creating everything we need just at the right time for us. I just have to remember God’s time, not mine. That brings me my happy news. After almost a year on the market my townhome (that I had prior to getting married) finally got rented. What a huge financial burden that was lifted (at least for a year). My hopes obviously was to sell it, but given the economy and how long it had sat empty with no bites for buyers or renters I’m happy the right family came along to now call it there home. Thanks for all the prayers…once again they were answered!!

Now, more importantly, how is Caden. Well, Caden is doing FANTASTIC!!! It’s so great to type those words. He is eating great, sleeping great, is pulling himself up onto everything, loves trying to climb up the stairs, pulls all the pots and pans out of the cabinets, and loves to giggle. He has mastered saying Da-dah, still working on ma-ma. Although we are still unsure of his vocal cord damage from his first surgery, it sounds as though the vocal cord has healed because his voice is nice and loud 

Again, thanks for all your prayers and support. We are heading up to Milwaukee twice in March and we will be dropping off more pop-tabs. If you have any and are planning on seeing either David or myself we will gladly take them. The Ronald McDonald Home will always have a special place in our heart! Speaking of RMH…..if you would like to see a picture of Caden and I we are on their website just click on events and you will see us in the top corner.

www.rmhcmilwaukee.com

Love,
Melissa

Helpful Videos

2010-02-12T13:07:00.004-06:00

All - Over the course of this last year I have been asked numerous times about what exactly HLHS is. I think I have explained the construct of Caden's heart versus the "normal" heart pretty good in most cases. Where it gets ugly is when I start drawing pictures. You see I cant use my normal stick figure illustrations when it comes to the heart. A HLHS family from PA I have been communicating with shared the below link with me. The link is the first of a 6 part series on HLHS. You can view the rest of the series by choosing them in the Related Videos section (each are numbered). Childrens Hospital of Philadelphia put out this series. While my heart (pun intended) is with Childrens Hospital of Wisconsin, I think CHOP did a nice job explaining Caden Marshalls condition. There is a strong message of hope in this series as well. If your so inclined to learn more.....

http://www.youtube.com/watch?v=TGODOZxPPtk&feature=SeriesPlayList&p=6F3745AFE64AC2DB

Holding Steady

2010-02-10T19:01:00.001-06:00

Hello all. David here on Wednesday night in snowy Cary, IL. I know it has been a short while since we last posted. More time in-between posts means that everything with Caden Marshall is going well and this post is no exception.

Caden Marshall continues to do well. He has been fighting a cold over this last week. He has had a nasty cough and a slight temperature but nothing that warranted a trip to the hospital. Our concern reached its highest level, along with his temperature (100) on Saturday so we called our pediatrician as well as CHW to talk to the cardiologist on call. Both doctors told us to keep an eye on the temperature and give him some Tylenol. Through our journey with Caden, Melissa and I always associated a fever with an infection. The cardiologist assured us that there is minimal risk of the temperature being brought on by an infection with his current construct which made us feel much better. At the time of this posting Caden Marshall has not had a temperature for the past two days yet he is hanging onto a bit of a cough but that should clear up soon.

Hopefully you noticed the picture above. My buddy Bobby and his family came up for a visit a couple of Saturdays ago. Bobby is my one of my best friends and of all my friends I have known him the longest (since we were 10 years old). Bobby came up to Cary with his wife Carol and children Jamie and Tyler to meet Caden for the first time. It was fun to just sit around and talk and then we went out to Nick’s for some pizza and peanut tossing. Bobby’s kids are awesome and it was funny to talk about how Jamie was successful in achieving her drivers’ license while my son is not even a year yet. It is funny how life works out sometimes… Thanks for coming up you guys, it meant a lot to us. Oh yea, thanks for hooking our Wii up to the internet as wellJ.

We hope you all have a great Valentines Day. That is of course if you honor the hallmark created holiday.

Much love and hugs from the Smiths

2010-01-20T20:34:00.003-06:00

Caden having a snack

Fun with Caden

Hi all. David Here on Wednesday January 20th. Melissa and I hope your 2010 is off to a really great start. For the Smith family, we are off to a phenomenal start. Caden Marshall is doing very well and is such a riot to be around. He is so inquisitive/nosy and wants to get into everything and now that he is crawling at a pretty good clip, it is easier for him to get to what he wants to get into. We have a lot of fun playing peek a boo. and hide and go seek (kind of). My new favorite game with him is fetch. I take a half full water bottle, which for some reason he is amused by, and i toss it and he goes right after it. Not that he returns it or anything but it is fun to play. Caden is like a little beautiful golden retriever without the retrieving part. Caden loves the bath and loves it more when he gets to take a bath with mom. At last count Caden has 4 teeth and loves to chew on; his finger, the ottoman, the entertainment center, Tupperware bowls and the occasional parents toe.

You can see from the video above is is eating well and eating different things. We are trying more and more people food. Most of which he seems to like. Melissa does such a great job making sure he is eating across the food groups and is so very patient with him. She is really a phenomenal mother. Caden loves sitting in her lap as she reads to him. He want to turn the pages and loves it so much he does it prior to the page read being complete. I posted a couple of videos above so you can see my boy in action. I had hoped to post one of Caden crawling as it is the cutest thing to see him go. I promise to get one out there soon. Enjoy the ones above in the interim.

Melissa and I are very thankful for the days that we have had and the days to come. 2010 should be less challenging than 2009 was. God willing Caden Marshall will not have any hospital stays in 2010. We have a check up scheduled in March and we hope to continue to receive good reports. Speaking of Caden Marshall's birthday, Melissa and I are deciding what to do. Do we do family and a few close friends or do we blow it out and have a PARTY!?! Not sure what to do. To Caden it wont make a difference but I know his parents are really going to enjoy celebrating as we have come a long way. God, our family, and our friends have carried us to this point. I feel like we should celebrate with everyone!! We'll see...

January 24th last year is when Caden Marshall, then Baby Smith, was diagnosed with HLHS. What a roller coaster ride since then. Thanks again for riding with us.

Much love and great wishes and blessings for you in 2010.

David

January 10, 2010 - Crawling....

2010-01-09T09:32:00.025-06:00

Caden ~ weighing in at 19.10oz, showing off 2 of his 3 teeth!

After 6 months in/out of CHW beautiful Gabi Danstrom (HLHS) is now at home with her family.

Little Lillyann Gesler (HLHS)

Lindsey Jo (HLHS)

Hi everyone - We hope you had a wonderful, happy, healthy Christmas and New Year. Caden is doing wonderful. He is eating great, just got his 3rd tooth, and is now crawling. We stayed in town for the holidays so it was nice and relaxing. We got to celebrate with David’s family, then my parents were able to make the trip up to ring in the New Year with us. We are excited about 2010 and enjoying having 2009 behind us. A new year has brought us new beginnings. See some of the great pictures above of some of the heart babies/families we have met along our journey. Please keep these babies in your prayers as well as those families who have lost their little angels. Cherish each day of this new year and everything it has to offer.

Love always ~ Melissa

December 27, 2009 - Santa's Visit

2009-12-27T20:43:00.011-06:00

Caden's wish came true............

Caden & Santa

Enjoying opening........

David and I bundled Caden up and headed out to a little hill near the house to enjoy the fresh 8 inches of powder. I think he liked the hill, just not the powder blowing back in his face on the way down :-)

I think Caden is just trying to figue out what just happened.....

Christmas 2009 ~ This was definitely a day we embraced, enjoying every minute with Caden.

We enjoyed time spent with family and friends and are truely blessed for having the opportunity to share it with our son. We wish you all a happy, healthy, and safe 2010!

Love to you ~

Melissa

December 24, 2009 - Waiting for Santa....

2009-12-24T18:53:00.002-06:00

Looking for Santa.....

December 11, 2009 - 9 months

2009-12-10T21:11:00.006-06:00

Our rock star eater Mr. Caden had a couple of weeks of really poor feeding, not eating solids, and only consuming about 10 oz total when he needed to be at 26-28oz. After obviously getting worried seeing this is struggle with most HLHS babies I put a few calls into CHW to talk to our dietician. I think we have finally turned the corner. As of yesterday he started to consume more liquids. This is great because if their isn't enough calories coming in and/or liquids our dietician wants us to mix canola oil in with his food to increase the calories- yuck! The good news over those 2 weeks he didn't lose weight like David and I expected. At his 9 mo. check-up he checked in at 19.1 pounds. He got his 2nd round of synergis, and is going into get his 2nd H1N1 shot next week.

We continue to be blessed each day, and are thankful for all of your thoughts and prayers for us to be able to enjoy 9 wonderful months with our son. God is good! Also on another happy note ~ congrats to Joy and Jack Parrino on the birth of their daughter Lillian Heather ~ we are so happy for you.

Love ~

Melissa

November 22, 2009 - Just Thankful!

2009-11-22T11:37:00.015-06:00

A picture worth a thousand words ~ thanks Dr. Tweddell!

Nurse Suzi

Today is November 22, 2009 In the advent of Thanksgiving the Smith family has been reflecting on this past year. Over the past 8+ months we have been thankful every day for the small and big things as they relate to Caden Marshall, Melissa, and myself. Traditionally Thanksgiving Day is a harvest festival. It is a time to give thanks to God for the harvest and express gratitude in general. For the non-farming part of the Smith family (us), we are thanking God for Caden Marshall and the special people that brought us all through this past year. Here are some of the things we will reflect on and be thankful for this Thanksgiving Day.

First and foremost we are thankful to God.. For the strength to carry on though the toughest of times and the mercy He has shown our son. Melissa and I had been strong in our faith before Caden and I know for myself, my connection with God has improved substantially. I am more open to putting things in His hands and am grateful that He has brought Melissa to me and trusts us to care for the life he has chosen for our son.

We are thankful for Caden Marshall. He has taught us so much about ourselves and continues to impress us. He is an absolutely wonderful baby and one tough kid. He has been through so much and yet he fights everyday to get stronger and smarter. I could honestly go on all day……

We are thankful for our families and their continued support. We know that they feel most of what we feel and that what affects us affects them without question. Yet without the love and support of our parents and siblings I don’t know how well we would have gotten through this past year. The nice thing about family is that they are there for you, whatever you need, or want, they are there. Having our families love has carried us through many times. For me, having my parents, sisters and brother in laws by my side while Caden was undergoing surgeries meant the world to me. We did not have to say much to each other because we all know each other well enough to understand what the other was thinking. A passing touch or glance was exactly what I needed at times because on the inside I was messed up. I am thankful that they understand and love me. I am thankful that our families get to share in our joy as well. They have been by our side from the start and they all love Caden so much. It brings us great joy when our family comes together. It is like a celebration of life every time we are together. I have often equated what Melissa and I have been going through as a very scary roller coaster ride. When that roller coaster pulled in, our families climbed in with us from the start. No one knew where the coaster was going. We did know that it would be a scary ride with risks involved. We were all cognizant that the ride could tragically come to an abrupt end. Yet Melissa and I were in, so without question, our families climbed into the roller coaster with us. They put their own lives and feelings aside committing to wherever the ride would take us all, as a family. We have had our ups, our downs and even been thrown for a loop a couple of times on the coaster. Yet here they are continuing to ride the ride with us no matter where it leads us.. We are so blessed and thankful to have you. We love you.

The world's a roller coaster

And I am not strapped in

Maybe I should hold with care

But my hands are busy in the air….. –Incubus-

Melissa and I are thankful for Children’s Hospital of Wisconsin and the wonderful surgeons, nurse practitioners, PA’s, nurses, and admin staff that not only took care of Caden Marshall but of Melissa and I as well. We had a cardiology appointment yesterday, that went fantastically (more on that later), where we got so see the wonderful people that took care of us. We were very happy to run into Dr. James Tweddell coming out of surgery. Now I don’t think he reads this blog but I would be remiss if I did not say how thankful we are for him.

Dr. Tweddell has sustained our son’s life though his surgical skills and deep devotion to CHD kids. Here is a man that works countless hours and is constantly looking to advance his surgical skills to help children and their families. He is the reason that CHW has some of the best success rates for HLHS in the country. I sit here and reflect on March 16th, the day Caden went into his first surgery. Melissa and I were sitting in the waiting room, surrounded by family, while the CHW staff prepped Caden for surgery. Melissa and I were lost in out thoughts, crying, praying, hoping, wishing, begging, and feeling helpless. Dr. Tweddell came out to let us know that they would be taking him in shortly. At that point I asked Dr. Tweddell if he would place a verse from the Bible (Philippians 4:13), that I printed out, in his pocket while he performed the surgery. He said he would and he did. I can remember; he looked at Melissa and I and very calmly told us that Caden is a perfect candidate for the Norwood procedure. There was a confidence about him that soothed us and at that moment our fear was beginning to be overtaken by hope. Through Dr. Tweddell’s 3 minute interaction, Melissa and I were able to calm down a bit. It was at that moment we knew, for certain, that we chose the best surgeon and facility for our son. Thank you Dr. Tweddell! We are thankful for your skills and commitment to the CHD kids and specifically what you have done for Caden Marshall.

We are also thankful for Dr. Nancy Ghanayem who was our constant point of contact while we were at CHW. She was responsible for Caden Marshall and his post operative care. Nancy, thank you for: taking care of us, giving info to us straight with the perfect amount of compassion. Also, thank you for your friendship. Most of all, thank you for the never ending commitment to Caden. Ensuring the best shot he will have at life as well as the quality of his life. We love you and thank you.

Melissa and I are thankful for the nursing staff, therapists (speech, PT, OT) PA’s and administrative staff. I hate to bundle them all up into one but if I broke each of them out separately you would be reading until Christmas! In our 3+ months at CHW, these wonderful people are who we interacted with the most. We are thankful for their approach with us and for translating a lot of medical terms into language that Melissa and I could understand. I am thankful that they looked out for Melissa when I could not be there I am thankful that they really love what they do and that it showed through in their care for our son.

We are thankful for the Ronald McDonald House Charities. For making a very difficult time for Melissa and I a bit easier because we never had to think about where we were going to stay, how we were going to pay for it, or the time lost from our son due to driving back and forth. We are also thankful to the volunteers that keep the house clean or the ones that come in and cook a fresh meal daily. For all of this we are very thankful.

We are thankful for the great support base of friends we have. We are thankful for the new friends we have met along the way. We are thankful for those that we have never met but whom seem like very close friends through their wonderful letters and never ending encouragement. From the friends, and teachers and students at Melissa’s school who held fundraisers, we have been overwhelmed by the generosity and support. The list is a mile long yet everyone has really made a wonderful impact on us. We are so blessed and thankful.

Individually I am additionally thankful for my wife. I was truly blessed by God when he brought her to me. She is a wonderful person, friend, and partner. She is smart, beautiful and does not take any crap from me (which surprisingly I like). This past year has been very difficult for us. Quite honestly I don’t know how she did it at times yet I know that I could not do this without her. She makes a wonderful mother and wife. I love listening to her read to Caden. I love the way she organizes his medications so I can’t mess anything up. I am thankful she loves unconditionally and makes me a better person. I love you LB.

Most recently we are very thankful for another good cardiology check up for Caden. We had a scheduled appointment on the Nov. 20 where we got some really great news. Caden Marshall is doing so well we will not have to return for another appointment until he is one year old. That is almost 4 months away! His heart function sounds good and the tricuspid valve insufficiency is holding where it has always been. His O2 sats are hovering around 84% which is fantastic for these post operative Glenn kids. All in all he is doing great. We are so blessed and thankful! We had a great little visit while we were there seeing all our friends that used to take care of us. People hear we are there and come up to see us. How awesome is that? Those that can’t leave their posts, we go see them. Melissa and I were a bit conflicted knowing what a great sign it is to not have to come back for 4 months yet we always look forward to seeing our friends at CHW. I suppose we can wait…. We hope they know how thankful we are that they are part of our lives.

Yesterday Melissa and I brought Caden to church with us for the first time. He enjoyed it (I think). I know his mom and I enjoyed having him there. It was quite emotional for us at one point as the message was about being thankful for everything that God has provided. We are so very thankful.

Melissa, Caden, and I hope that you have a wonderful Thanksgiving Holiday. Once again, thank you for all the support you have shown us. We are very lucky to have you.

Love,
David & Melissa

November 16, 2009 - 2 Teeth

2009-11-16T20:18:00.005-06:00

8 months

Enjoying time with good friends Mary Jo & Tony Morini

Hi! Well, I officially lost the bet. Caden's first word was indeed da-da, not ma-ma. Darn! I really dislike being wrong. So our big boy is downing the food as you can tell by his chunky little cheeks. He is starting to dislike the bottles and is enjoying more baby food, but CHW still wants us to have a majority of his calories to come from formula. You would never guess he is in the 25th percentile on weight. Caden also has 2 teeth that have emerged. So cute!

David and I continue to work every night with Caden doing little exercises with him that PT showed up to strengthen his core. It's much like 5 minute abs for babies. Other than that...Caden is doing absolutely great right now. We are trying to keep him healthy in the midst of cold and flu season to keep him strong so he just continues to thrive like he is doing now. We continue to be blessed and thank God for our boy. He reminds us each day how precious each minute of life is and how to never take it for granted.

We also continue to keep HLHS babies Lillyann, and Lindsey Jo who also are enjoying their time at home but have been struggling with gaining weight. Please pray for them as well as baby Gabi (HLHS) who is back in CHW recovering from the H1N1 virus. Baby Gabi and Baby Thomas will be undergoing their 2nd surgery (the Glenn) soon. Prayers of strength for these little fighters as well as for strength for their parents during this time would be greatly appreciated.

For those of you who are still collecting pop-tabs.....we just want to continue to say thanks. We stopped and dropped off more during our last trip to Milwaukee. Your little baggies have added up tremendously. We were told last year alone they made almost 20,000 on pop tab donations over the year which they put directly back into the Ronald McDonald Home. Isn't that incredible!! Thanks to all of you out there again who are keeping them for us.

God is great ~

Love,

Melissa

November 9, 2009

2009-11-09T20:08:00.005-06:00

Caden looking to be mobile

Caden and his bud Casey

Hey all. David here on a nice Monday night in Chicagoland providing you an update. Today we had a good day together as a family. Melissa and I brought Caden Marshall up to an appointment at CHW today that went well. The appointment was not the normal cardiologist check up that is coming up on Nov. 20th but a developmental check up.

CHW offered us the opportunity to have Caden take part in a developmental study that will focus on children specifically with Congenital Heart Defects. This is a great opportunity for us to see how Caden is faring against other children in his age range as well as help CHW collect data to share with other hospitals and families. The information made available to us through studies like these are one of the reasons we chose to bring Caden to CHW for his surgeries and care. CHW is leader in tracking these CHD kids through childhood (God willing). First and foremost they focus on sustaining life and then, through programs like this, they focus on the quality of that life as well. We are so glad we made the choice we did by going to CHW. Also, Melissa and I love that by participating in voluntary studies like these we may be helping another couple make the best decision for their family.

Today we saw professionals from speech, physical, and occupational therapy. Each of them sat on the floor together with Caden and did some different tests with various objects observing him closely. It was actually very interesting seeing their methods and learning what they were looking for. Trying to asses an infant must be difficult yet they had some very ingenious ways. It was apparent to us that this crew is passionate and really loves what they do. One treat for today was seeing PT Jackie again. She normally does not do clinic work as she normally works only in the CICU at CHW so we really got lucky that she was filling in today. They ran all their tests and came back a couple of minutes later with the scoring. Here is how Caden Marshall is doing.

Weight: 17lbs 15ozs
Length 27”
Cognitive (play skills) 8 mo
Fine Motor 10 mo.
Gross Motor 7 mo
Receptive Language (understanding) 6 mo
Expressive Language (talking) 8 mo.

Caden Marshall will be 8 months old on Wednesday so he is a bit behind in at least one of the areas. Melissa and I are absolutely thrilled with his progress. We know that these HLHS kids that make it tend to be behind in motor development because of the surgeries and early immobility. Also some can be really challenged from a cognitive/neurological standpoint due to the bypass process during the surgeries where blood flow is cut off to the brain as well as post surgical saturation levels that can leave damaging lesions on the brain if they are too low for too long. Our son appears to be doing well.

We are and continue to be blessed with our son. We are so thankful to God for his guidance and the grace He has shown on our son.

We hope to post a video of him crawling soon. We feel he is so close.

Thank you for your constant support.

David, Melissa, and Caden.

Oct 31, 2009 - Cuteasaures Rex

2009-11-01T19:59:00.005-06:00

Happy Halloween to you all. Caden enjoyed his first Halloween as a green and purple dinosaur. Although he wasn't too fond of the costume we were able to snap some good pics. On Friday 10/30 Caden and I stood in line for a little over 3 hours for the H1N1 vaccine. One word to describe that process - MESS! After talking with Milwuakee, and his peditrician they expressed their concern was far greater if we chose not to get it yet it wasn't offered anywhere but the few places through the Lake County Public Health Department. Doors opened at 8, we arrrived at 8:10 to have about 220 people in front of us. Caden got the "shot" and I got the nasal spray.

Caden continues to get stronger, he can sit up by himself now (with the occasionally freak himself out fall backwards), he can stand with us supporting him, and we think he is very close to crawling.

Love to you all....

Melissa

Check out his muscles in the video clip....... :-)

Oct 27, 2009 - Quiet....

2009-10-27T19:51:00.007-05:00

Aunt Becky Monroe visiting from Arizona

What Caden has or will be doing.....

1. Got to meet his Aunt Becky Monroe from Arizona for the first time. Yeah!!

2. We have a peditrician appointment to get "synergis" vaccination for RSV on Friday.

3. We have a Hypoplastic Developmental Clinic Appointment on Nov 9th in Milwaukee where they will do a series of tests to determine his cognitive/development thus far. This will be tracked every 6 months.

4. We have a cardiology appointment on November 20th back in Milwaukee.

5. He has almost graduated to size 3 diapers.

How is that for a creative post - ha, ha :-)

God is great!

XOXOXOXO - Melissa

A Great Cause... Oct 17, 2009

2009-10-14T20:42:00.007-05:00

Nurse Molly & David at Al's run for Children's Hospital of Milwaukee

Nurses: Mark & Molly, Myself, David and Chris Buchmann

Naomi, Dylan, Paul Gesler (HLHS Lillyann's parents)

Al’s run was a success. Thanks to all of you for your encouragement, support, or monetary donations we were able to raise over $1100 dollars. We appreciate all of you who have helped in so many ways. This is our way of “giving back” to the hospital that gave us so much. We had the privilege of seeing several HLHS heart families while we were waiting for the race to start. Chris and Michelle Buchmann (Angel Carsyn’s parents), Rich and Stephanie Petska (Angel Braden’s parents), and Naomi and Paul Gesler (Lillyann’s parents). Lillyann is still fighting at CHW after her 2nd HLHS surgery. We ask for you to continue to pray for all of these families for strength, hope, and peace including Lindsey Jo, and Gabi who are out of CHW but are still fighting to gain strength and overcoming their own obstacles in their journey.

Many other CHW staff members showed up to support the cause. We were able to see Nurse Molly, Mark, and Julie (all of which had Caden during his stay). David and I decided at the last minute bringing Caden might not be a good idea seeing it was in the forties and windy so Grandpa and Grandma Smith got to spend the evening with Caden in Cary while David and I stayed up in Milwaukee for the night getting to hang out with friends. It was a great weekend!

As for Caden….he continues to get bigger and stronger. He is “almost” sitting up on his own. His favorite baby food is prunes. He rolls over, loves splashing in the bathtub, and absolutely HATES his Captipril (the important heart medication he takes orally 3x a day). Our feisty son has found every trick to keep the syringe out his mouth, and has caught on to all of our “tricks”. This led us to calling CHW Cardiology for advice. We are now going to pill form, crushing it and hiding it in his food. This has GOT to be easier!!

We continue to be blessed with each and every day we have with our son and continue to thank God everyday for having each and every one of you. Thanks for everything. We love you!

Melissa and David

October 9, 2009 - Happy Fall

2009-10-09T19:06:00.003-05:00

Good Checkup

2009-09-26T20:27:00.007-05:00

Nurses Suzi, Jaci, and Liz (L to R) with Caden

Nurse Maura checking Caden out.

RMH House Director Maryilyn with Caden and I

The Smith family headed up to Milwaukee, WI yesterday and made a day out. The focus reason for going was Caden Marshall’s cardiology appointment. We also use this opportunity to reconnect with people. We really enjoy spending time with the people that have made such a big impact in our lives as well as visiting with the friends we had made while at CHW (they are all one in the same now).

Caden Marshall had a pretty good check up with Dr. Kovach (sp?). Dr Kovach was happy to learn that Caden is eating good and thriving in other areas. He was just a bit concerned with two things. First, the fact Caden sweats consistently when he eats. The sweating is an indicator that his heart is working really hard. Also, he heard some more tricuspid valve insufficiency which means some of his blood going from the right atrium to the right ventricle backs up a bit. Neither of these is currently at alarming levels. They just need to be monitored and can most likely be treated with medication until the Fontan surgery. We were convinced that the concerns were not immediate when Dr. Kovach told us we did not have come back for two more months. There is no change in medication at this time aside from moving from ¼ to ½ tablets of aspirin daily. Caden currently weighs 16.5 lbs and is 26 inches long which puts him at about the 40th percentile.

Before we went to our appointment we stopped by the Ronald McDonald House (RMH) to drop off about 50 lbs of pop tabs. My sister Cheryl’s family really rallied the troops and put together quite the collection of pop tabs which we were happy to deliver and unload at RMH. We always stop in to see the House Director Marilyn. She is such a sweet heart and does and awesome job with the RMH of Milwaukee.

During our appointment we put the word out that we were in the clinic and received some special visitors. I hacked into the computer system while waiting for the doc and sent a page to Dr. Nancy that said: “I am in the Herma Heart center for a check up, come and see me. - Caden”. Dr. Nancy came right up and we had a nice visit.. As we have discussed in previous posts, we know Caden is doing well because of Dr. Nancy and her dedication to him and his operative care. We know she loves seeing him as much as we love seeing her. We also had visits from Social Worker Leah, who is a real hoot and very helpful as well as a visit from our friend Nurse Julie. Also Maura, who works in the Herma Heart Center at Children’s, came in to assist with the check up. Maura is pictured above getting Caden’s blood pressure and checking his saturation levels. His sat levels are a respectable 84% right now which we were very happy to hear.

After our appointment we stopped up on the third floor of Children’s Hospital and were happy to see some of the great nurses that took care of Caden Marshall. In the picture about you see Suzi, Liz and Jaci. These are a couple of the nurses that took care of Caden right after each of his surgeries. These three are trained in critical care and really did a lot in ensuring Caden was recovering well and was comfortable. Suzi (on the left) was there for us and Caden from start to finish. She is awesome and I was very glad to get to see her. She will never know exactly how special she is to us – unless of course she reads this! (We love you Suzi - Thank you!)

After we left CHW we met our friends Chris and Michelle for lunch. You will remember that Chris and Michelle lost their daughter Carsyn a week ago Sunday to complications related to HLHS. As you will expect they are doing as good as they can. The have a great approach and are really great people. I don’t know how they are doing it but they are and we are better people for knowing them. We had great conversation over lunch and we got to meet Casey their three year old daughter. Casey could not get enough of Caden. She wanted to touch and help with Caden the whole time. If she had been given the chance Casey would have been a great big sister to Carsyn. God had different plans and we ask that you continue to pray for Chris and Michelle and their family.

All in all it was a good day. It was an exhausting day that covered the gamut of emotions for Melissa and I. We were happy to return home. We don’t have another appointment in Milwaukee until the end of November. However we will be up there again October 10th for the Als Walk and Run Fundraiser. We love that there is an opportunity to give back a bit to CHW as they have given us so much. Melissa and I will be participating in the Als Walk and Run. I will be the walk, and Melissa will be the run. They should work “roll” into the name as that is what Caden will be doing while I push him. My parents are coming up with us to walk as well and will be watching Caden for us after as we catch up with friends. If you feel so inclined you can click on the below link to donate at our donation page.
http://www.firstgiving.com/dmsmith3

Thank you for all your support.

David and Melissa

Milestone Reached

2009-09-16T21:58:00.003-05:00

Caden Today

Caden Six Months ago today

Today is September 16th and Melissa and I are celebrating something very special to us. It seems kind of funny how important we hold this day but if you understand the journey we took to get here than you’ll understand why…

This week Caden Marshall has officially been home more than he had spent at Childrens Hospital of Wisconsin. At this point he has been home 51% of his life. What I like about the percentage tracker is that as time goes by, the percentage of his life spent at CHW will decrease more and more.

As you can see by comparing the pictures above, Caden Marshall has come a very long way in the last six months. We are so happy to have him home and I think we are settled into a pretty good routine. I think that we are experiencing normal baby stuff at this point and it is awesome. Caden Marshall seems to learn more and more everyday and it is so much fun interacting with him. The challenging thing is that everything that we went through to get to this point is still very fresh in our minds and I fear we will always be looking over our shoulder. We don’t want to live in fear however it is what it is and we have resolved in our heads that this is just how it is going to be. We combat this by praying every morning that Caden makes it through the day and when we lay him down in the evening we pray that he makes it through the night. It sounds sad when I read the last line back but that is how we do it. This week received a horrible reminder that we can not take our son for granted.

Friends of ours from CHW Chris and Michelle lost their daughter Carsyn on Monday to complications related to her HLHS. We became fast friends with Chris and Michelle and stayed close to them on their journey with their daughter. Our heart absolutely breaks for them and we pray that they will eventually find peace. Please send a prayer their way as they will be laying Carsyn to rest on Friday. Melissa and I can’t seem to get them out of our head. First and foremost because they are friends that have to do something that no parent should have to do. Secondly, and admittedly selfishly, we fear that could be us one day.

The Brightside is that we still have our son today and we are very happy. We continue to hope and pray for Caden Marshall and his future. There were times that we felt we may never get to this point. Yet we have. Celebrate with us!!

Thank you for sharing this journey with us.

David and Melissa

P.S. I hesitated to post some of the above yet we decided to as we have always shared most of our feelings with you as it is part of the journey you have chosen to walk with us.

Six Months Old

2009-09-12T14:21:00.005-05:00

Great Grandpa Monroe with Caden

Family bowling

Cousins Playing (Jackson and Caden)

Happy Saturday to you all. Sorry for the delay in posting however with work and schedules, updating sooner just has not been possible.

Caden Marshall is now 6 months old and doing really well besides a bit of a cold. He is now 15lbs 8oz, eating like a rock star, and very active. Caden has mastered the art of rolling over and appears to get stronger every day. Melissa and I are really enjoying parenthood. For me, I love coming home to my family. No matter how bad the day has been at work (more and more lately) when I get home Caden greats me with a big smile and a lot of limb flailing. It is the greatest part of my day. Life is good.

Over the Labor Day weekend the Smith family headed down to Marion, IL to introduce Caden to his great grandfather, extended family, and great family friends that have supported Melissa and I through our journey. The weekend was fantastic however there was one highlight that stood out above all the others. Melissa and I pray everyday that Caden will have the opportunity to do certain things in his life. One of those things that we prayed for early was for Caden Marshall to have the opportunity to meet his great grandfather, Charles Monroe. Charles is a great man and in my opinion a member of Americas greatest generation. Aside of being a WWII pilot, Charles is smart, proud, funny, and a very strong man. We hope that parts of Charles have worked down the family tree into Caden. I don’t think I can express the happiness that Melissa and I felt to see Caden being held by ggpa Charles. Another prayer answered, thank you God.

During our fantastic weekend, Caden Marshall also got to meet Uncle Randy and cousin Ryan for the first time. Hopefully Ryan took in the training opportunity with Caden as she, and her husband Jason, are expecting their first child in December! Additionally Melissa’s brother Eric, sister-in-law Janelle, and nephew Jackson coordinated a visit home with ours so we had a nice extended family visit all under Fred and Rita’s roof. We also got to spend lots of time with the Edwards clan which I always enjoy.Another great part about our weekend was the open house that Rita hosted for us.

Caden Marshall has such a great fan club down in Marion, IL. Friends of the family from the community, church, and school have been a wonderful support and prayer network for Melissa, Caden, and myself so it was our pleasure to have them meet our son. The open house was perfect because packing up Caden and trying to travel around to see the amount of people that came by would have just been impossible. Thank you so much everyone for your generosity, constant support, and never-ending prayers!!! I hesitate to call anyone in particular out because I really enjoy everyone that I get to see when we are down in Marion. That being said I would feel remiss if I did not mention Carol Tyner. Carol lost her true love and husband Bruce to cancer the Sunday prior to our visit. Carol still made the time and considerable effort to come and see our son. Thank you Carol and thank you everyone!

Here are a couple of more notes of appreciation before I sign off on this post. Fred, thank you for showing me some fishing tactics as well as attempting to teach me how to filet the bass I caught. Also Fred, thank you for hooking us up with the Miners baseball game. What a great time at the ball park with family. Loved it! Thank you Edwards family for letting me fish in your pond, setting up bowling, and the wonderful lasagna dinner. I love hanging out with you guys!. Randy, Jim, Dave, and Dutch, thank you for expanding the foursome to allow me in as the fifth to get in some golf while I was down there. Dutch, if you are out there ball hawking, let me know if you find my three Titleist nxt’s and my one top flight ;). And finally Rita……Thank you for always, always taking care of us while we are down there. You always make me feel so welcome when I am there and I know Caden likes being with g-ma Monroe as well. xoxo

That is all for now. I hope you enjoy some of the pictures. We will be posting next week as Caden reaches another important Milestone.

Thank you Marion!

David and Melissa

August 30, 2009 - Trifecta

2009-09-01T20:54:00.005-05:00

Baby Blake, Todd, & Kristen Benjaminson with Caden

Greetings from Arlington Park Racetrack where David and I spent the afternoon with the Tarczon and Benjaminson families. Unfortunately we didn't win any benjamins but had lots of fun soaking up the sunshine and hanging out with friends. More importantly we got to meet Blake Benjaminson!!! Congrats again Kristen and Todd :-)

As you can see by the picture....Caden is enjoying his food these days. A nice mixture of 27cal formula, baby food, and rice cereal. We are so thrilled he is eating and gaining weight. Feeding is definitely one of the bigger issues these heart babies have so we are excited he is doing so well.

We continue to be blessed by your prayers!

Love,

Melissa

August 23, 2009 - Bye-Bye Mullet

2009-08-23T19:31:00.006-05:00

Out for a hike

Learning to love nature (mobile pic)

Valerie (David's cousin) and Caden - Chesterton, IN

Back to work. Yes, 2 weeks ago I returned back to work. As hard as this was for me, it was the best decision for our family at the time. The transition has been hard as you can imagine but has been much easier seeing Dana a close friend of mine is watching Caden. Yes, just Dana and Caden. God continues to answer our prayers! Is she a lifesaver or what?? Words can’t describe how thankful I am to have her in my life and what she is doing to help our family. With Caden not having all his vaccinations and daycare’s having long wait lists it was becoming quite a stress as to who we would leave our son with and who would care for him and administer his meds. She cares for him like he was one of her own. Thanks for everything Dana.

As for Caden he has had some eventful days in the past weeks, but all in all continues to do very well. Over a week ago we started to notice more redness around his chest incision scar so we took him to the pediatrician. They snipped some of the sutures and started him on an antibiotic to be safe. Yesterday Caden was given his Hib vaccination. So far he has gotten the DPT and the Hib. Dr. Frommelt his cardiologist from CHW in Milwaukee has recommended Caden get the DPT, and Hib for now spacing them out. We are tackling only those sicknesses that would be very difficult on Caden’s heart for the time being. Spacing them out means many more trips to the pediatrician but we feel better about not “overdoing” it while he continues to heal.

Last weekend we traveled to Chesterton, Indiana to visit David’s mom’s side of the family. Valerie (David’s cousin) and Richard recently married in Texas and had their reception back home in Indiana. Congrats to you both ! We are so happy for you. It was so great to see everyone and get to share your special day with you. Thanks Aunt MaryLou and Uncle Rick for opening your home up to us and letting us stay with you.

Of all the weekly events probably the most exciting for Caden was his HAIRCUT. Ahhh…….the mullet is now gone. We agreed we would wait at least 6 weeks before anything sharp was near our little boy so that time finally came. David got out the clippers and shaved off the party in the back. Although mullet did bring many laughs and smiles it does look really nice short.

Caden continues to get stronger weighing in at almost 15 pounds. He has rolled over a few times and we continue to work with him to get stronger through his chest and “trunk” so he can support himself. We need this strength before we could start Rice Cereal and baby food. The therapists we had do the initial screenings through Early Interventions were helpful in their advice and we will be starting in on services as soon as we get the insurance figured out. I am thankful for David to be able to stay on top of the insurance, claims, coverage etc. He has spent hours on the phone trying to clarify and get answers to what seems to be a big, big, frustrating pile of paperwork.

Despite a few minor bumps in the road during the last few weeks, we are making great strides and we continue to be blessed with his progress, strength, and his resilience.

Today we made it out to to hike up in the Hollow’s Conservation Area in Cary, IL. It was a beautiful day and was so nice to get to enjoy the afternoon soaking up the sun and fresh air. I wish I had some pics to post of our day but I brought my camera but left my memory card at home……makes it a bit difficult to take pictures huh?

We are looking forward to a trip home to Marion over Labor Day weekend to visit with family, Caden’s great grandfather, and family flying in from Arizona. We hope to see many of you while we are home in Marion and if your available feel free to stop by my parents home between 1-3 on Saturday. This will allow us to hopefully see many of you without having to travel all over town.

Love always,
Melissa

August 11, 2009 - 5 months old

2009-08-11T18:59:00.003-05:00

Everyday is a miracle and blessing! Thanks for your continued love, support, and prayers.

Love,

Melissa and David

August 7, 2009

2009-08-07T20:52:00.010-05:00

My aunt Trina and their kids Ethan, Olivia, (Caden) Victoria, Brittney, and Danny Edwards

Celebrating Trina's birthday on the 4th.

Olivia and Caden

Victoria and Caden

Hi everyone. Caden Marshall is still doing great. He has been enjoying more family visits these last few days. My aunt/uncle and cousins drove up from Marion to hang out and meet Caden. It was so fun to spend time and catch up with everyone and celebrate my aunt Trina's birthday. We know it was a long 7 hour drive, especially with the 4 kids crammed in the van but we loved every minute of your time here and appreciate you taking the time to come visit.

They saved our son's life......

2009-08-02T11:02:00.013-05:00

Lifesaver's: Dr. Tweddle (Caden's Cardiothorasic Surgeon), and Dr. Nancy Ghanayem (cardiac intensivist) a visit during our clinic appointments on 7-31-09

It has a been a great couple of days. First we had our doctor's appointments up in Milwaukee to do the swallow study in radiology and our cardiology appointment in Herma Heart Center . David and I couldn't have asked for better appointments. The morning started out with Angie our speech therapist who set things up for Caden to do the swallow study. This test is a x-ray /video of Caden as he swallows in various positions. The purpose of the test was to determine if Caden is/would aspirate if we fed him more solid foods. Aspirating (when the fluid goes into the bronchi and lungs) can occur with dysfunctional swallowing which Caden has struggled with since there was some vocal cord damage during the Norwood operation (the operation he had at 5 days old). In order to see the results of this test Angie mixed Barium into his milk and rice cereal and as he swallowed we could see it on the video screen. It was very interesting to see Caden's swallowing pattern and how he isn't as organized while swallowing when more upright but he didn't aspirate. David and I will continue to sideline feed him (on his right side) as he is more organized and doesn't work as hard. However, we we did get the ok to start rice cereal once a day in normal position. This was great news.

After our appointment we wanted to visit the 3rd floor (Cardiac Intensive Care). We were able to see Dr. Nancy (intensivist), Dr. Tweddle (cardiothorasic surgeon), some nurses , doctors and other heart families. How do words describe a picture of the two people who were responsible for saving our son's life. I was so excited to see the both of them together (which rarely happens as Dr. Tweddle is always in surgery) I asked to snap this photo. I was so overwhelmed my hands were shaking so it's a bit blurry. The graditude is beyond words.

After chatting with the two of them we were able to talk to other HLHS parents who we stay in contact with. We enjoyed lunch together (thanks Chris and Michelle) and then went up to our Cardiology appointment.

The cardiologist also gave us great news. He told us he didn't hear the tricuspid valve regurgitation which is the valve that is in between the right atrium and right ventricle. We will continue on the doseage of 5ml of Captipril 3x a day along with his other meds. Julie from dietitics also stopped in our appointment to go over where Caden falls on the growth chart. She wants us to continue on the fortified formula (27k cal) to help him continue to gain weight since eating is still a lot of work for Caden. After the cardiologist listened to him, and we talked about meds, and vaccinations we were told we don't have to return for 2 MONTHS! This is such awesome news!!

We left CHW and made a quick stop by the Ronald McDonald House to drop off donated pop tabs that were given to us and had the opportunity to see Marilyn the house director. It was definitley a day full of emotions. It is strange how being back can be so comforting, yet bring back a wave of emotions. I'm sure that feeling will never go away as we relive each day with the other families who too are waiting for the day they can take their little ones home. Baby Carsyn, Lillyann, and Gabi.....keep fighting! You are God's miracle.

We ended our weekend with my parents who were up visiting. It was so nice to have the ability to spend some quality time with Caden since they don’t get to see him often. Thanks mom and dad for helping us around the house and allowing us to come over to the hotel to enjoy Caden's first dip in a pool. It was great to spend time with you both. We love you.

Thanks again for all your prayers for Caden's continued strength. He is doing very well and we are grateful for the ability to get such great news like we did this weekend.

God is great!

Love - Melissa

July 28, 2009

2009-07-28T20:21:00.005-05:00

Hi everyone over the last 2 weeks we started Caden's vaccinations and had our meeting with the Birth-3 program coordinator to discuss services Caden might need. At this point we are only getting required vaccinations not recommended and we are spanning them out over a long period of time. We are also considering which vaccinations are more important for him with his condition. Our boy continues to gain weight and we are happy to say he is almost in the "normal" percentile for weight.

At the birth-3 meeting the different therapists discussed what they would like to see Caden work on to gain strength. For now, they would like to see him once a week for (Physical Therapy/Occupational Therapy) and twice a month for (speech therapy). Caden is showing signs of chest, shoulder, upper arm weaknesses that obviously are from the extended time on his back while in the hospital. Each day he continues to get stronger and with the therapists help we will see him gain this strength back. Speech Therapy has also recommended a Video Fluoroscopic Swallow Study (VFSS). This will allow them to see exactly what the damage was to the vocal cords and how he is compensating when he eats. This will be more important to know as he begins eating solid foods so he doesn’t aspirate. This test will be done this Friday up in Milwaukee. On Friday we also have a Cardiology Clinic Appointment so it will be a full day of appointments for Caden. We hope to see some of the HLHS parents if we get the opportunity while we are up there. There are still so many sick babies on the CICU (Cardiac Intensive Care Unit) floor. Please pray for their healing so they too can come home soon.

A special prayer request for baby girl Carsyn, HLHS, who just received a new heart today. We pray for the donor family for their loss, and for the ability to give Carsyn the heart she desperately needed.

We continue to thank you for your prayers and support. We are constantly reminded of how lucky we are for each day we have with our son.

Love,
Melissa

July 24, 2009

2009-07-24T10:18:00.005-05:00

Hey all. Everything is simply great at the Smith household. We are truly very blessed by every single day we have together with Caden Marshall.

Melissa and I were sitting around talking about how we will explain Caden Marshall's "situation" to him when he is older. How to explain the limitations he will have and why he must see the doctors so regularly and such. The conversation then switched to God and the role He played. How to raise him as God would want us to. How to communicate to Caden Marshall the importance of letting Him guide daily decisions, how to depend on Him for strength and the importance of prayer and support that got mom and dad through each day. Then we switch the conversation to you, our never ending support base here on earth. We may never be able to thank each of you for all the encouragement. We may never be able to express in words what it has meant to us and the value it brought us when times were the toughest. Melissa and I do however feel we may be able to explain it to Caden and we would like your help.

We are assembling a book of memories. A book that captures the days, good and bad, in words and in pictures. We plan to put in this book our blog postings and sharing them with Caden Marshall when he is ready. We want to assemble a part of this book that will highlight the support of each of you and your families have provided. We will put in some of the beautiful drawings that the Katich girls made for us and the pictures and letters my niece and nephews drew. These were hung on the wall in the hospital and brought smiles and tears (happy) to Melissa and I on a regular basis. What we would like to request are pictures of you that shows you supporting Caden Marshall. I know that a lot of you bought the Caden shirts in support of us. If you still have them can I request you put yourselves or your children in them again and send us a photo please? Unfortunately they are not still available. Yet if you don't have them we would still like a picture of you to put in his memory book.

Caden will need to understand that there were/are many people fighting and praying right along with him. Caden still has some fighting to do down the road and we envision showing him the book before his third surgery so he understands he is not going in with just mom, dad, and God on his side. I know it is an odd request so don't feel the pressure to send us a photo. Melissa and I just thought it would be nice to have.

Above is an example pic. This is the Iowa Smith clan at the Smith Family reunion back in May. They all came out rockin their Caden shirts. Don't they look great! Thanks Caden heads (as Monique -third from right- calls em) !!

If you are so inclined, send the pic to melissaanddavid@comcast.net

Thanks again for everything. We will talk to you soon.

David and Melissa

July 20, 2009

2009-07-20T20:36:00.004-05:00

Rice's visit from Texas (Derek, Adelia, Mike) and Caden

Alex & Caden

Caden is still doing great! He continues to grow, discover new things, and continue to teach David and I how blessed and thankful we are to have him in our life. Since the last time we posted we have had the opportunity to have OT (Occupational Therapy), DT (Developmental Therapy), PT (Physical Therapy), and Speech Therapy come out to our house with the state's birth-3 program. They all have done their initial assesements and this coming Thursday 7/23 we find out what services they recommend if any for Caden. Also in this time we have had the opportunity to visit some great friends, and have some good friends come in to visit from Texas. It's so nice to finally start summer (even though it's almost over) and enjoy the time with friends and family some near and some far. We realize we have some many more we need to see and know in time we will have that opportunity. Thanks again for all your support, love and prayers to help us be a family together again.

Love,

Melissa

July 10, 2009 - 4 months old

2009-07-10T10:02:00.003-05:00

Hi everyone. I wanted to send out a few pics of Caden. He will be 4 months old tomorrow. He is doing great, eating well, and loving his new crib that we just got yesterday. It is one of those convertible cribs that will convert into a toddler bed, then a full size bed so we won't need to buy new furniture as he gets older. We continue to be thankful to have our son home and that he is doing so well. God is good! Thanks for all your prayers and support.

Love,

Melissa

July 6, 2009

2009-07-06T18:06:00.004-05:00

Hi family and friends ~ It's been awhile since we posted so I thought I'd drop a quick line or two to tell you we are all doing great. Caden is almost 12 pounds now! He is interacting a lot more, and his new thing is giggling. It is so amazing what joy he brings to our life and how blessed we are to have him at home.

We had our last home health nurse visit this morning and everything looks great so she doesn't need to return. Now we are just awaiting an intake appointment from OT, PT, Speech, and Developmental Therapists. They are all coming out within the next couple of weeks to see how Caden is doing and if he is/will need any services to help him with his recovery.

As for me. Well, I'm still working on how to get all I want to accomphlish done in a day with so little sleep. I can say....I'm still working on that one. I'm also trying to get back into walking/jogging something I enjoyed doing pre-pregnancy. The c-section took me a bit longer to recover from than I thought so now that I'm feeling back to myself I'm ready to enjoy the running when I can find the energy to get out and go. My goal would be to get back into running races soon.

Thanks again for all your prayers and support to keep our boy home :-)

Love -

Melissa

July 1, 2009

2009-07-01T20:44:00.005-05:00

Hey all. David here on Wednesday night. I thought I would post quickly to let you know that everything is great in the Smith house. Caden has fed like a champ the last couple of days until today. He is lagging a bit today but we are sure he is going to pick it up again tomorrow. Not really much to report other than we are very happy and enjoying our time together. I thought I would use the rest of the post to talk about Meatball #2.

Meatball number two is my nephew Carson. He is number two because out of the three blood nephews I have he was born second. If you know me, I am close to my friends kids and love them like nephews as well and they are also meatballs however I never assigned them numbers. Okay back to Carson and the picture above.

When Melissa and I brought Caden to meet Meatballs 2 & 3 (Chase) and Uncle Keith, Carson presented us with a giant box of pop tabs. From what I understand this go getter kid pursued just about everyone to save their pop tabs so we can donate them to the Ronald McDonald house. I heard one story about how he saw his teacher drinking a soda one day so he brought in a paper cup, taped it to her desk, and asked if she could put her tabs in there! He rallied his school to gather all these pop tabs. I can't even imagine the total number but I know that the RMH will appreciate the work. Melissa and I appreciate it as well. It really touched us that Carson worked so hard to help the organization that helped Melissa and I so much. You rock Carson. Thank you.

Have a great night everyone and a safe 4th of July.

David and Melissa

June 26, 2009 - Clinic Appointment in Milwaukee

2009-06-27T20:14:00.007-05:00

Nurse Julie met us before we headed back home.

Yeah! Caden had his appointment on Friday and everything went well. Caden had an X-ray and his lungs looked great, and the cardiologist said Caden's heart and valves all sound good. We will continue to work on Caden's feeds (which are sometimes on the low side), and we got the OK to start immuizations in July. David and I were really excited to get such great news. They don't need to see us again in Milwaukee for a clinic appointment for another month.

While we were waiting for our appointment we had the opportunity to talk to Chris another parent of an HLHS baby who we had met on the 3rd floor just down from our room. Chris and Michelle's daughter Carsyn is currently awaiting a new heart. It was great to talk to you Chris. We also got to visit with Leah (our social worker) and Maura (a nurse). It was nice to see some familiar faces.

In our previous blog entries you might remember Nurse Julie. We also got to meet up with her for lunch since she wasn't working at CHW on Friday. Great to see you again Julie.

Our day ended with more great news. My friend Kristen had a baby boy - Blake Joseph. Congrats to Kristen and Todd on their much awaited bundle of joy.

We continue to thank you all for your prayers. We feel so blessed to have our son home and that he is now doing so well.

Lots of love -

Melissa

June 25, 2009

2009-06-25T18:54:00.004-05:00

Last night I had to laugh as I was discussing just typical baby things with Grandma Smith and how I really didn't know any of the answers to simple baby things. David and I could tell you a lot about Caden's heart, his heart meds, etc, but the baby stuff....I decided I don't know anything. I guess learning from your mistakes is half the fun huh? Hosptial life has you focus on much "bigger" baby things like the HEART, but it is now the "smaller" things I am enjoying soooooooo much.

We have had a few people out to the house in the last few days to do intake appointments to determine if Caden will need Occupational Therapy, Physical Therapy, and Developmental Therapy. Since Caden has spent so much time on his back from his surgeries. We are still waiting for the incisions from his surgery on his chest to heal so he can do "tummy time". We konw he is a little behind but sure he will catch up once he has healed.

We also had a nurse come out to do an evaluation on Caden. Other than pulling out a loose stitch from his drainage tubes incision site Caden is doing great, growing, laughing, smiling, and cooing. He just needs to eat more!

As for David and I. We are just enjoying being back together as a family. I'm a bit sleep deprived but what new mom isn't. However, Grandma Smith came up to help out for a few days so I managed to squeeze in a few extra hours of sleep which was nice (Thanks Sue!). I made it out today to run some errands, and got to visit with some friends which was great. Tomorrow we head to a clinic appointment back in Milwaukee for Caden for a check-up.

Life is great. God is good! Thanks for the blessing you have given us.

Love -
Melissa

June 22, 2009 - Happy Fathers Day

2009-06-22T22:15:00.003-05:00

Three Generations of Smith Boys (Cliff, David, and Caden Marshall)

Happy Belated Fathers Day to all you dads out there. Thank you all for the Fathers Day wishes and welcoming me to the club. I truly had a fantastic day. From the time Melissa brought Caden to our bed in the morning to reading to him in the same bed at night before putting him in his room. In the middle of that my parents came buy and let Melissa and I get some stuff done around the house. I was glad my folks came over. It was nice to have three generations of Smith boys together.

June 20, 2009 - Fun day :-)

2009-06-21T21:59:00.009-05:00

Chase, Keith, and Carson Skopek (David's sister Kristen's family)

The twins Chase and Carson

Dana and Chris Quinn

(Dana is a good friend from grade school who lives nearby)

Megan and Tyler McCulloch (David's sister Cheryl's family)

Hi everyone. Caden had a big day on Saturday getting to meet his cousins on David's side for the first time. We started off the morning at the Skopek's (David's sister Kristen's family), then on my way home stopped off to see Dana and Chris Quinn (a good friend from grade school), then the McCulloch's (David's sister Cheryl's family) came over and we topped the night off with our favorite Nick's Pizza. Oh, and how could I forgot another one of David's highlights in the day was picking up his Harley which the Skopeks have graciously been storing for us. David got to spend the afternoon soaking up the fresh air on his bike. I don't think he could have asked for a more perfect day. It's so good to be home to do the "normal things" like David mentioned in a previous blog. Life is good. God is great!

Love -

Melissa

June 19, 2009 - Normal

2009-06-19T21:31:00.002-05:00

Hey all. Very Happy Friday night to you all.

Just a quick update to let you know that everything is great, fun, new, and normal. Normal, meaning how it should be when you bring a baby home. Melissa and I are settling in with our family and having fun doing it. Melissa is a wonderful mother and evidence of that continues to show itself in new and wonderful ways to me She is so great with Caden and me, we are both truly blessed to have her.

For me, I am loving being Caden Marshalls dad and am looking forward to fathers day for no other reason than I am in fact the father of a very strong little man. I sit here and reflect on this week and it brings a big smile to my face. Each day I went to work and left a kiss for my wife and my son on their sleeping heads. I call and check in a couple of times a day to see if everything is fine and it has been. When I leave work I can not seem to get home fast enough. I drive home looking forward to what has become a routine when I walk in the door. Caden Marshall is normally awake in one of the many places we put him. I get down on my hands and knees and crawl towards him growling about how I am going to get him. The closer I get to him the more growling I do and he loves it. Caden greats me with a big smile and continues to smile the more I growl and kiss him. He likes to stick out his tongue sometimes when he smiles and it is cute! Look, I know that this is normal new dad stuff yet that is what is so great about it.........It is normal and wonderful.

This weekend I am really excited about. If everything works out, Caden Marshall is going to meet some of his cousins for the first time. If you know me you know how I feel about my niece and nephews and how important they are to me. While Caden was in the hospital they were unable to meet him for one reason or another and that bothered me. Well that is going to be rectified this weekend and that will make me even happier than I am now -if that is possible.

Life is good. God is great.

David and Melissa

June 17, 2009 - Pediatrician

2009-06-17T20:42:00.003-05:00

Hangin out at home....

I remember all the times either my mom, or other mom's would talk about not having enough time to shower. I SO GET IT NOW!!! I haven't quite grasped a routine yet. People tell me you sleep when baby sleeps. Right. So when does everything else get done? Well, I'm making many mistakes and laughing as David and I now really get to experience being parents. Today Caden had his first pediatician's appointment. We reseached a bit to find a doctor who was somewhat familiar with HLHS since ordinary colds etc can affect them a bit different than healthy babies. Luckily found one close by in Crystal Lake.

Caden had sorta a rough morning which carried into the appointment so our quick well-visit turned into a bit over 2 hours. Our 11.5 pound boy managed to pee & poop on the doctor during the various tests, temperature, etc...add in a few meltdowns and a call into Milwaukee and that was our day. Actually, Caden has been quite fussy today, hasn't eaten well, and was very clamy feeling so we were a bit nervous he was coming down with something again. The doctor talked to the NP up in Milwaukee so he too could get a baseline for Caden so nothing was overlooked. I think he is fine, but the peditrician wants to see us again on Friday. Doctors want to hold off on all immunizations for now letting his body have a chance to heal. Probably early July we will start playing catch up on those.

Some more great news is the arrival of Josie Licht who was born yesterday. Congrats to Eric and Meg on their new bundle of joy!

June 15 - Some pics

2009-06-15T20:01:00.004-05:00

Hanging out in Dad's spot.(and loving it)

On our walk and just woken up.

The Smith Family around the neighborhood.

June 15, 2009 - Great Day

2009-06-15T11:24:00.003-05:00

Hey all. I just felt the urge to post really quick. It is 11:24 and I am working from home today so decided to take a break and share some of the last 24 hours. There will be pictures coming so hold on to your horses....

Melissa and I returned home with Caden Marshall yesterday at about 3:30PM. We had a safe ride home with no needs to pull over on the trip. We rushed in to get his feed ready so we did not have the time to just sit and reflect on how blessed we are. We got a good feed in and then just started settling in. Caden Marshall is such a good boy. He only fusses when his diaper is dirty or when he is hungry. Other than that he just looks around and is generally content and happy.
While Melissa settled back into home I put the stroller together and watched the Cubs with Caden. My wife has not been home but once or twice in the last three months and she looked like she was trying to make up for lost time. Every light and appliance in the house was on within a half hour of her being home! We enjoyed a Nick's pizza together and then went out with Caden for a walk. It was so fantastic. We just rolled him through the neighborhood and enjoyed the normalcy of the whole thing. It was a beautiful day made even more beautiful by spending time with my wife and son outside in OUR neighborhood.

When we got back Melissa went to work organizing the refrigerator getting the next several feeds and medications laid out. She has an awesome and thoughtful way of organizing so we (I) dont forget anything. I am very blessed that God brought Melissa to me.....

We fed Caden Marshall at 9PM and put him down for the night in his room. He is currently sleeping in one of those travel pens as we had not gone out and gotten furniture yet. We will do that this week now that we know our boy will be able to sleep at home for years to come!

Melissa and I finished some work around the house and then went to bed. It was so nice to be in our bed together again. We prayed together and got to sleep. We traded off waking up for feeds which Caden Marshall did well on. I remember sitting there at 3AM giving him his feed thinking to myself how nice it was to have the nurses doing the middle of the night feeds. Quickly then realizing that I would have it no other way... Feeding my son, in our house, knowing my wife is just several feet away in our bed. We are so blessed.

Thank you for the continued support.

David and Melissa

June 14, 2009 - WE ARE HOME!!!

2009-06-14T21:50:00.002-05:00

After over 3 months we are finally home. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We thank everyone for all of your love, thoughts, and prayers during this time. We have some pictures to post, so check the blog at a later date.

Love -
Melissa and David

June 13, 2009

2009-06-13T20:53:00.002-05:00

Hey all. David here from Milwaukee where it was a beautiful day. First off Caden Marshall is doing well today. His heart rate is higher than we would like it to be but all in all he is doing well. Second, Melissa and I got out for a couple of hours as it was a perfect day here in Milwaukee. Sunny and mid 70's. We could not ask for it to be nicer. Melissa and I were thinking of sneaking Caden Marshall out in our backpack but figured that the doctors here would probably frown on that......

That is all for today. We hope to be out of here soon so keep your fingers crossed and the prayers coming please.

David and Melissa
xoxo

June 12, 2009 - Just another day...

2009-06-12T22:32:00.009-05:00

PIC line in his arm is out! Ouch.

Nurse Suzie and Shelly....

Jackie from PT

Hi everyone. Caden has had another good day. Our typical days usually consist of listening to rounds (where the doctor's all meet to discuss the progress and make decisions on medical care), having PT (Jenni or Jackie) come to work with Caden on muscle groups that become stiff from being sedated in bed from surgery, and sometimes Leah (our social worker) and Angi (or speech therapist) will also swing by the room to check on our boy. Today everyone stopped by. It is so amazing how this team of medical staff work so great together and to see it in action is excellent. So, the morning started off with nurse Shelly removing Caden's PIC line in his arm (he didn't enjoy that....), and the afternoon consisted of working with the various medical staff mentioned above, and this evening Caden has enjoyed spending time with David. At this time we are just working on his feeding, and watching some elevated resting heart rates.

Thanks again for your love and prayers.

Love- Melissa and David

June 11, 2009 - 3 months old!

2009-06-11T17:29:00.002-05:00

Caden is 3 months old today and he had a pretty good day. The antibiotics are now finished and his PIC line will be removed on Friday. They are going to hold off scoping his throat to look at his vocal cords for now. Dr. Nancy wants his body heal more before anymore procedures are done - Yeah! Now all Caden is working on is his feeding. We feel we are moving in the right direction and finally are seeing a light at the end of this tunnel. Thanks again for all your thoughts and prayers. They are working!!!!!!

Love -
Melissa

June 10, 2009 - Mullet...

2009-06-10T18:45:00.005-05:00

Caden's serious face...

Caden's mullet!

So many of our pictures we take are obviously from the front. I couldn't resist this pic we took about a week ago with Nurse Julie. Look at Caden's MULLET. I'm not sure I can look at this picture without laughing.

Anyway, today was another good day. Dr. Nancy would like to start fortifying my breast milk to increase the caloric density so he will gain more weight (I think all the weight he gains is going straight to his little cheeks), and they are discussing whether or not to do another scope down the throat again to get a baseline of his vocal cord paralysis (we posted on this on March 25, 2009 if you wish to read). Otherwise, Caden is feeling better with each passing day. Thanks again for you thoughts, prayers, and comments. We are so fortunate to have all of you following us in our journey.

Love always -
Melissa

June 9, 2009 - The smiles are back!

2009-06-09T18:55:00.010-05:00

Now this is more like our son!!

Nurse Julie and Caden :-)

Another win for Caden! He is officially back to himself (with the exceptions of a few major unconsoleable moments which they are still monitoring to make sure they don't overlook anything). However, I feel our boy is back!! The smiles, giggles, and coo's. I can't say we are in the clear quite yet, but I have a good feeling we are well on our way.

Today's pictures and video clip is of one of our favorite nurses- nurse JULIE. Julie has been with Caden through the good and bad and takes care of him like he is her own. We are so priveledged to have Julie, Shelly, Suzie, Melissa, and all the other great nurses. They are definitely TOP NOTCH! Thanks Ladies :-)

Love to you all -

Melissa

Video clip of Caden and Nurse Julie 6-9-09

June 8, 2009 - And better....

2009-06-08T19:19:00.002-05:00

Hi everyone - It's Melissa. Each day that passes Caden seems to be a bit more lively and back to himself. Doctor's are keeping him on his antibiotics until late in the week then they will remove the pic line in his arm. The Physicians assistant who closed Caden's chest came to check on the redness surrounding his incision which appeared to be better yesterday but red again today. If you look closely at the picture from yesterday you might notice some bruising and some purple lines. The purple lines were from a body marking pen that they used to outline where the redness stretched out from his incision. They marked it to see if it continued to get red beyond that point. So, the antibiotics are doing there job so now we just continue to work on feeding and watching his oxygen saturations. All in all, today was a pretty good day. We thank you for your prayers and praise god for all the blessings.

I would also like to wish my brother Eric a very Happy Birthday today! Hope your having a great day!!!

Love -
Melissa

June 7, 2009 - Getting Better...

2009-06-07T16:34:00.004-05:00

Hi Everyone. I'm happy to report Caden is finally starting to feel better. We walked into the room this morning to find him smiling. A sight we haven't seen for quite some time. Dr. Nancy told us his white blood count dropped again today which is good, and she said the rest of the tests haven't told us anything yet so the mass amount of antibiotics must have worked to kill off the bacterial infection. We are out of isolation now (yeah...those gowns are a hundred degrees), and they have Caden back on room air (no oxygen). He is allowed to eat again which he just rocked out 85 cc with David. All in all, we feel blessed your prayers continue to work. Now we just continue to work on feeding, monitoring his saturations, and watch his white cell count to make sure his body continues to fight off this infection.

I'm happy to post a picture where Caden is back to himself. Eyes wide open.

Thanks again for your love and prayers -

Melissa and David

June 6, 2009

2009-06-06T22:11:00.002-05:00

Hey all. David here from the RMH on Saturday night. Caden Marshall had an okay day today. He is inconsolable at times however those times were less then the times yesterday and yesterday was less than the day before. We hope this trend continues as when he is in pain it is very apparent. His poor little body shakes and he flails his limbs around when he is in pain. Melissa and I try to console him while trying to keep our cool at the same time. I cant imagine how Melissa did this all by herself on Wednesday when Caden Marshall was inconsolable for most of the day. I am very blessed not only to have a very strong son, but also a very strong wife. I am amazed by both of them!

The doctors still have been unable to identify the source of the issue with Caden. We still wait for cultures to grow to know the source of the infection. That being said his white blood count came back lower which means whatever it is, the battery of antibiotics they have him on are apparently working. We may actually never know what is going on with him. We just pray that whatever it is goes away and stays away.

With everything going on we failed to mention my mom, who celebrated her 37th birthday on June 4th. Happy birthday mom! We love you. Mom - now knowing the love parents have for a child and the amount of worry that goes into them, I would like to apologize to you for everything I put you through from the age of 5 (first ramp attempted (unsuccessfully)on my bicycle) through the age of 20. You are the best mom!
Also, Megan graduated from 8th grade this week. I am sorry that I am missing her party tonight as she deserves to celebrate this right of passage. Megan - I am proud of you and I love you. High School next year.!! You gave yourself a good base and I am glad you did because now it counts!

Much love to all and thank you for all the prayers. We hope to be out of the woods soon so keep it up please.

David and Melissa

June 5, 2009 - Some results back

2009-06-05T21:18:00.006-05:00

We aren't in the clear yet, but we did get preliminary test results back on the some of the bacterial and viral cultures which all have been negative. We understand it might be several more days before all the results are conclusive. Until that time David and I patiently wait. Over the last 48 hours I feel Caden is a bit more calm today. The redness around his chest incision from surgery seems to be more back to normal (just pink around the edges) and his skin which broke out in rash all over his body late in the evening yesterday is getting better. He isn't kicking and flailing his arms and legs in as much pain as Wednesday and Thursday. All the news we got so far today has been good. We just continue to wait for the rest of the results from the blood, urine, and spinal tap. Dr. Nancy told us she is treating him for everything right now because they can't wait for test results especially with Caden being just 1 week post surgery. Dr. Nancy also felt it would be a good idea to put a pic line in( Percutaneous Intravenous Catheter). This allows nurses to administer antibiotics and draw labs directly from this line with less risk of damaging the veins and less risk of infection and is generally put in when IV fluids and/or antibiotics are needed for a longer period of time. Tomorrow we are suppossed to begin feeding again. Doctor's had us hold all feeds until test results came back negative from something called necrotizing enterocoltis (a bacterial infection of intestine).

Caden still continues to fight. He will not give up and neither will his mom or dad :-)

We are still in isolation so that is why in the above picture we must wear protective gowns, masks, and gloves.

Thanks for all your wonderful comments today!
Love -
Melissa and David

June 4, 2009

2009-06-04T21:59:00.003-05:00

David and I would like to ask all of you to say a prayer for Caden when you read this blog. Caden has an infection which is undetermined at the moment. He has received antibiotics, ultrasounds, x-rays, IV's, a blood transfusion and they also administered a spinal tap today to try to figure out the cause of infection. Caden is very uncomfortable and in a lot of pain. We are in isolation right now (meaning we gown up, wear a face mask, and gloves apon entering the room). This is to prevent the spread of anything that potentially might be contagious. Please pray for Caden's strength to get through this very difficult and scary time.

Love
Melissa and David

June 3, 2009

2009-06-03T23:07:00.004-05:00

The roller coaster continues.....It's 11:15 and I just got in from a very long day. Caden is really struggling with pain, and bad headaches from the pressure differences from his surgery. The pain seemed to get worse as the day went on . By late evening we were looking at heart rates in the 190's , oxygen saturations in the 70's, and blood pressures in the 130/50's. Yes, hardly something you or I could handle let alone his little body. He has been so uncomfortable he hasn't slept or eaten much. As doctors are trying to tweek out some stronger pain meds we are also trying to be conservative seeing what happend last Saturday. We continue to pray for Caden's body to heal, get stronger, and fight through these days post surgery.

Thanks again to everyone who is reading and/or writing on our blog. After a long stressful day it is so nice to read your words. Your prayers again are greatly appreciated each and every day.

And yes, we do get to hold our son (much sooner than the last surgery which is AWESOME). We just have to watch how we hold him and not to put pressure anywhere near the incision down his chest or near the abdomen where his chest tubes were placed.

Love -
Melissa

June 2, 2009 - Echo & EKG

2009-06-02T15:57:00.004-05:00

Hi. Caden is having a good day so far. Doctors are still trying to tweek some medications for his high blood pressure, and he is still struggling with his "Glenn Headaches" but otherwise he is starting to act more like himself. He had an EKG and Echo today so they gave him some sedating medication so he is really groggy now. I'm looking forward to him waking up soon so I can see those little smiles and hear those cries (as weird as that sounds). We continue to thank God for the healing he has done thus far and continues to do on a daily basis.

Love-
Melissa

June 1, 2009

2009-06-01T21:23:00.004-05:00

Hey all. David here on Monday night. Today was a decent day for Caden Marshall. I say decent because he is very uncomfortable most of the time and the Tylenol and other pain meds are only helping him so much. He is experiencing what the doctors call "Glenn Headaches". Essentially, with the new physiology inside of him, the blood backs up a bit into his head creating pressure and pain. These headaches are common for kids that have an early Glenn operation and there is no immediate risk to him as a result. The headaches just need to run their course until his body adjusts. It takes a while for the pain to subside so he cries and you can tell by looking at him he really hurts. Outside of that he is doing okay. Saturdays events are very clear in our minds however he continues to improve so hopefully the events that took place will become a distant memory soon.

Caden is not eating as well as we would like however he is becoming himself again quickly. By "himself" I mean wide eyed and looking around. Before the Glenn he was full of smiles and some talking (you know what I mean). We are waiting for the big smiles and the talking to come back very soon. Our son is so very strong and he continues to fight. He has been through more than we would have ever imagined for him and he continues to impress us. We talk to him a lot and pray with him often. We know Caden and God both hear us.

Thank you for walking this road with us and your constant prayers that will get us H one day.

David and Melissa

May 31, 2009

2009-05-31T19:32:00.001-05:00

David here reporting that today has been a much better day for Caden Marshall. Much, much better! Yesterday was a day Melissa and I would love to, but won’t likely ever forget. I am glad yesterday is behind us and we will look forward being positive and hopeful. Today has been positive thus far and we hope to continue its momentum.

Caden has been comfortable today disturbed only by the removal of tubes and headaches that we were warned about. Today they removed two chest drains, his CVP line and his arterial line. Removing these tubes and lines are good indicators of his little body healing however it hurts him quite a bit during the removal as you could imagine. He is such a strong boy. Caden started eating orally like a champ today as well. He started by rocking out 120cc’s followed up by an 80cc session. This last feed he only too 45 but we are very happy he is off to a good start. Coming off of yesterday Melissa and I are very very pleased and quite relieved he bounced back so well.

Melissa and I appreciated your encouraging comments, phone calls, and such yesterday and today. Yesterday was a difficult one to say the least. Without our faith and your support I don’t know how well we would be doing.

David and Melissa

May 30, 2009 - Scare.

2009-05-30T15:13:00.009-05:00

A picture of Caden's chest X-ray. You can see the wire sutures that closed his chest back together along with other pacer wires which are placed in case Caden's heart rhythm becomes abnormal.

Caden Marshall 2 hours post surgery on 5-29-09
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It’s not even 3:00 pm and David and I feel like it’s midnight. We have just experienced what no parent should EVER have to see or go through. A code. Not once, but twice. Caden seemed to be doing fine this morning, the morphine that was used to take the edge off his pain was wearing off. Caden seemed a bit “goopy” sounding in his throat (so they deep suctioned him to get any goop out of his airway) and administered his regularaly scheduled dose of morphine. Within ten minutes we noticed his oxygen saturations sharply dropped to 50, then 40, then to 28. The normal rebound didn’t occur, then he quit breathing. His face and arms were blue. I pushed the code button on the wall and in swarmed 15 doctors within seconds. David and I sat speechless in the corner as we listened and watched what was the longest 8 minutes of our life. After another 20 minutes, Caden coded again. We know we are in a critical stage now, and there is a reason we are here in the ICU, but the fear of witnessing such an event is horrifying. Doctors believe his paralyzed vocal cord (which was injured in the Norwood surgery) along with his normal functioning vocal cord went into spasms immediately cutting off all air supply. We can't help but sit and stare at the monitors but we know God is in control and is watching over our son even in difficult times like these.

Love -

Melissa and David

May 29, 2009 7:45 pm -Back from Surgery

2009-05-29T20:31:00.006-05:00

David here at 8:30PM. Caden Marshall came out of surgery at 7:45. Melissa and I got to see him very quickly as they rolled him past. He did really well today and we are very proud of him. Caden Marshall came back extubated (breathing tube removed) from the OR which is great for an early Glenn. Melissa and I talked with Dr. Tweddell who said things went well and that he is pleased with the overall result. Our boy looks beat up but overall pretty good for someone who just had his heart worked on. He is very uncomfortable right now and will be for the next couple of days. The nurses do a great job of pain management so we are counting on them to make Caden Marshall as comfortable as possible. We know they will.

Melissa and I are very grateful for the prayers as we are sure God heard and continues to hear us. We are so grateful and feel very blessed with our son and each other.

David and Melissa

May 29, 2009 5:50pm - Still in surgery

2009-05-29T17:48:00.002-05:00

Update: The doctor is progressing along. While inside they found they also needed to fix the tricuspid valve. They are still working and we are hoping surgery will be done and Caden will be back before 8:00pm. We will continue to keep you updated.

Melissa and David

May 29 3:30PM - Off to a good start

2009-05-29T15:31:00.002-05:00

Update. The Doctor got through the sternum without much issue. We were worried about scar tissue sticking the heart to the back of the sternum however it was no issue. Next update likely wont be till after the surgery. Just wanted to get this out there. Thank you for the continued support.

David and Melissa

May 29, 2009 12:20PM - Off to Surgery

2009-05-29T12:21:00.002-05:00

Hey all, Caden Marshall was just rolled down the hall to surgery. For those of you that have seen that done to your child, you know what we are going through. For those of you that have not, I would not be able to explain it. We pray as a family for success today.

My sister Kristen shared this song with me a while ago and it has been where our heads have been for quite a while so I thought I would share the lyrics and a youtube link. It is called "He's My Son" by Mark Schultz (a link is on the sidebar of the blog)

I'm down on my knees again tonight I'm hoping this prayer will turn out right See there is a boy that needs Your help I've done all that I can do myself His mother is tired I'm sure You can understand Each night as he sleeps She goes in to hold his hand And she tries not to cry As the tears fill her eyes
CHORUS: Can You hear me? Am I getting through tonight? Can You see him? Can You make him feel all right? If You can hear me Let me take his place somehow See, he's not just anyone He's my son
Sometimes late at night I watch him sleep I dream of the boy he'd like to be I try to be strong and see him through But God who he needs right now is You Let him grow old Live life without this fear What would I be Living without him here He's so tired and he's scared Let him know that You're there
CHORUS
Can You hear me? Can You see him? Please don't leave him He's my son
http://www.youtube.com/watch?v=m8bvA3M63G4

May 28, 2009 - Surgery Delayed

2009-05-28T11:04:00.003-05:00

Hey all, David and Melissa here with a quick update. Caden Marshall's surgery has been postponed till tomorrow. We were informed there is an emergency that needs Dr. Tweddell. For Melissa and I it is like being stuck at the top of a roller coaster, waiting for the drop. The good thing is we get to love on him for one more day before his Glenn.

Hoping and praying.

David and Melissa.

May 27, 2009

2009-05-27T19:59:00.002-05:00

Hello from CHW. David here with a Caden Marshall update for you. Well since out last post on Monday Caden has not been doing so well with his saturation levels or blood pressure. As you know Caden was put back on oxygen to help is saturation levels last Wednesday. Since then he has required more and more oxygen to keep is SP02 levels in the low 80’s. We were informed on Tuesday that the value of the first surgery has run its course and he will need his second surgery soon. Much sooner than the average 4 month of age mark. Caden Marshall will have his Bi-Directional Glenn surgery performed by Dr. Tweddell tomorrow (Thursday).

Melissa and I were hoping to have Caden Marshall much bigger for the second surgery but it was not meant to be. Having this surgery early does create additional risks. Risks around him tolerating the surgery and infection are the big ones. The doctors have informed us of the risks and advised us there is more risk to him if we wait longer to perform the second surgery. Unlike the first surgery (Norwood) however this is a much less invasive procedure. This surgery will result in the removal of the BT Shunt which has caused so much trouble. Dr. Tweddell will detach the superior vena cava from the right atrium and attach it directly to the pulmonary artery. This surgery should improve his saturation levels as it will reduce the pressure on the heart and make the blood distribution to the lungs passive. I have placed and illustration of the Bi-Directional Glenn below. Caden will enter surgery around noon tomorrow for what is an average of a 4 hour procedure. We will be sure to update tomorrow night.

Melissa and I are doing okay and we are hopeful and continue to pray for our son. Can we ask that you do the same please. Some of our family has joined us here at CHW to support us during the surgery. We are very thankful that they are here as we will need them. Uncle Eric was able to fly in from Arizona which is really fantastic. I know Melissa appreciates that he is here more than she will ever be able to tell him. Thanks Eric!! This is the first time Eric has got to hold his nephew and by the looks of it, Caden is enjoying it as much as Eric is.

We look for your support and prayer tomorrow. We pray that the surgeons will have the steady hands and skills to perform this stage of the surgery. We pray that Caden Marshall is able to tolerate the physiological changes to his heart. And for Melissa and I, pray for strength. We tend not to ask for much but we ask that you pray with us.

David and Melissa

Bi-Directional Glenn

2009-05-27T19:56:00.002-05:00

May 25, 2009

2009-05-25T19:30:00.003-05:00

Greetings from Room #312,

It has been a quiet memorial day here at CHW. David and I got to enjoy taking Caden outside for a little walk with Nurse Suzie, and Caden got to meet little HLHS baby Lindsay down the hall. She is recovering from the Glenn which is the surgery Caden will be having soon. We still are working on a date for Caden's second surgery. We have had a few conversations with Dr. Nancy about our concerns with having it so early so we are still in a hold pattern for now. Caden still remains on oxygen and still has his NG in place (which is good because he has been slacking on his feeding). We hope you had a safe and fun memorial day weekend!

Love,
Melissa

May 24, 2009

2009-05-24T17:44:00.014-05:00

Melissa's parents

Grandpa Fred (Melissa's Dad)

Grandma Rita (Melissa's mom)

Aunt Cheryl (David's Sister)

Grandma Rita & Grandpa Fred Monroe

Grandpa Cliff (David's dad)

Uncle Keith and Aunt Kristen (David's sister)

Today was a wonderful day for Caden. He was held ALL day by his aunts, uncle, and grandparents. Enjoy these photos from the day. We are excited to have my parents up again from Southern Illinois. Thanks for making the trip.

Love,

David and Melissa

May 23, 2009 - Pop Tabs

2009-05-23T16:51:00.003-05:00

Hi! Over the last couple of days in the hospital Caden's saturations started to drop again. Dr. Nancy felt it was because he was getting dehydrated again so they dropped the NG tube back down to feed him the remaining of the food he wasn't taking orally. This helped for a day then his oxygen saturations started to dip again so last night they put oxygen back on Caden. We have tried to wean him several times today but as of now his body still requires it to keep his saturations in the high 70's to low 80's. Now we are just waiting, and monitoring all of his numbers to see what our next step might be.

Since David is loving on Caden right now I thought I'd use this time while I have access to his laptop to give you some insight into the RMH pop tab program. As you know David and I have felt so blessed by the Ronald McDonald Home and you hear us talk about it often. We count our blessings we have such a wonderful place to call home while Caden remains hospitalized so we don't have to drive back and forth from Cary, IL to Milwaukee, WI. It has been almost 10 weeks we have utilized this wonderful house so I wanted to let you know there are some easy things you can do to make a difference to help all the homes across the U.S. Collect your pop-top tabs.

Maybe you have seen people pull these off but had no idea what they did with them. If you want to help instead of throwing them away- keep them. The RMH recycles them and the money collected helps with the operation and supplies for the home. They can be dropped off directly or there are other options that are listed on there website ( http://www.rmhcmilwaukee.com/) and visit the pop tab page.

I know many of you are already familiar with this program and some of you might already collect them but in case you weren't and want to make a difference save the tabs. Your small action does make a difference. Last month I watched the cars continue to swing by and drop the tabs off from a small baggies to huge plastic milk jugs. It is amazing to see how these little tabs can really add up. If you wish you can see the money they have raised check out their website.

Thanks again for all your thoughts and prayers.

Love-

Melissa

May 21, 2009

2009-05-21T17:30:00.005-05:00

Hi everyone. It's a beautiful day up in Milwaukee today. I wish I had exciting news to report we were going home, but unfortunately after listening to the doctor's rounds today it seems like the Glenn (the second open heart surgery) might be moved up possibly to next week. This is something that David and I don't feel comfortable with at this time. This is because the surgery is more risky the younger the baby is. We would like to see this surgery performed around 5 months allowing Caden to get bigger and stronger (this is when they normally do this procedure). Once David returns we will have these discussions with doctors so we can feel confident in this upcoming surgery and its success.

As you can see in the picture (from previous ones) he has started to fill out. Caden is just over 10 pounds. Yeah!

Love always -
Melissa

May 20, 2009 - Still Here

2009-05-20T21:01:00.003-05:00

Hello everyone. David here letting you know that Caden Marshall is still at CHW and doing fine. Our hopes of popping in and out have so far been dashed so far. We are however still holding out a bit of hope that we can spend just a bit more time with him at H before his next surgery. While we are disappointed to be back at CHW, we know that this is what is best for Caden as he receives such attentive medical care in CHW. Melissa and I provide all the love he can handle while the great nurses and doctors work to get everything right medically. To be honest, and even though they won’t admit it, I know there is love beyond the medical care from the some nurses and at least one doctor for our son.

Since Caden Marshall’s return to CHW he has been doing well. Still having a little challenge eating but doing much better over the last day which we hope continues. They have removed the NG feeding tube at this point and everything is now being fed orally. His saturation levels (SPo2) have been in the high 70’s which are acceptable. We would like to see them in the 80’s however we know neurological injury should not be an issue in the high 70’s. The Glenn is still scheduled for June 15th however if he does not eat well they will move it up in the schedule.

Since Monday night Melissa and I have been able to catch up on our sleep. Leah, our favorite social worker, was able to get us right back into the Ronald McDonald House. As a matter of fact we were placed right back into the extended stay room we had just left on Saturday. I know Melissa and I have talked about RMH in the past but let me just reiterate how fantastic that charity and the Milwaukee house is. We have met many families while we have been there over the last 60+ days and each one is very thankful. We all agree that our situations would be made much more difficult if the RMH facility was not available to us.

Melissa and I want to thank you for your letters, blog comments, voicemails, and conversations. We know you are feeling a bit of what we are feeling because you care about us. We would be having a much more difficult time without your support and encouraging words. I need to let you know that we are actually doing okay. Sure we have our moments but overall we are in a good space emotionally. I feel that we have finally accepted the path that God has put us on. We spend less time mourning the way we thought having a child ought to be. Instead we are spending more time embracing the way it is and are thankful for what we have. Melissa and I realize how lucky we are to have each other and our beautiful boy and look forward to the day when you get to meet him.

Prayers and thoughts for each of you.

David and Melissa

May19, 2009 - Just when you think you're out.....

2009-05-19T11:27:00.002-05:00

Well, we enjoyed our 2 days at home with Caden Marshall and all your well wishes however we are back at CHW. Don’t worry Caden is doing fine and resting comfortably.

Sunday Caden did not feed well and Monday was even worse. His maintenance (min) level is 500cc and at 10pm he had only ingested 283cc’s with just two feeds to go. At that point we took off the rose colored glasses (that we wear at home) and realized there was no way he was going to get close to what he needed. That coupled with the fact Caden threw up his latest dose of Digoxin Melissa and I were concerned. The single most important point that we heard when we left here on Saturday was that he needs to eat to stay hydrated. With the BT Shunt, if he does not stay hydrated then a clot would likely form at the Shunt causing critical blockage. We called the cardiologist on call at CHW and she instructed us to come in. So hear we are…….

We arrived just after 1:00AM and they immediately dropped in an NG tube, started him on pedialight (sp?), took a chest x-ray, and a set of labs. Caden Marshall is doing fine. All the tests came back normal so for now we just wait and see.

Thanks for the continued support.

David & Melissa

May 16, 2009 - We are Home!

2009-05-16T22:07:00.005-05:00

We are home. That is right, you heard me. We are home! I honestly do not know where to start other than to say we are very excited and happy today. We are very thankful for Gods blessings and all of your support.. We did not think we would actually get to spend any time at home before the Glenn but here we are and we could not be more excited. It was two months ago today Caden Marshall underwent the Norwood operation so I guess it fitting he comes home on its anniversary.

To fill you in; this past Tuesday the Doctors at CHW started talking about Caden Marshall potentially being discharged this Saturday (today). Melissa and I have been down this road before so we did not get our hopes up too much. To be honest, I was probably more pessimistic about coming home than Melissa. Anyway, having been down this road before, and in an effort not to jinx us or get your hopes as well, we were careful not to mention the possibility on the blog. We wanted to be certain.

Well let me tell you. We are certain because we are here. I am sitting on the couch watching Melissa feed Caden his medications right now! Caden Marshall had no troubles coming home and slept most of the ride. Since we got him home he has been awake most of the time. I think he is just taking in the new surroundings as he is bright eyed and looking curious. Melissa gave him a bath, put him in an outfit and he has been content just hanging out with us ever since.

Melissa and I could not be happier today. We know that this ride is not over but for now we are going to catch our breath and enjoy these moments. I wish I could describe how we are feeling today but I will leave it to your imagination. Whatever you come up with though, multiply it by 3.

We posted a couple of pictures above. You will the gist of most of them however let me talk about one in particular. If you see a face that you don’t recognize, that is our Dr. Nancy Ghanayem. You have heard us refer to her as “Dr. Nancy” a lot over the last two months. She is the Doctor that has been responsible for all of Caden Marshall’s care since his surgery and she will be there for him for the next one. I will not go into a lot of detail other than to say she is fantastic. We are blessed with her care as a Doctor and thankful for her, the person. Both of which we really enjoy.

That is all for now. We are putting together a little video to celebrate the road Caden Marshall has taken to get home. Look for what will probably be a youtube link soon.

Much love from our home in Cary, IL

David, Melissa, & Caden