Jack Jensen's Blog: Welcome Home Carter!

Saturday, January 31, 2009

Welcome Home Carter!

I was so excited today when I learned that Baby Carter was sprung from Duke and went HOME!! Congrats to Kellie, Brad & 'big sister' Lucy. Carter is such a cutie pie and they are an amazing family. I'm thrilled for them. Jack has been running around all day with some new musical instruments and we had a parade in the kitchen. I ran to grab the video camera and then coax him to have a "Welcome Home Carter" parade and music show but it's 30 minutes 'til bedtime so ...well, you'll see. At any rate, we're so excited for Carter and his family. I can so clearly remember the joy when we brought Jack home. We just kept pinching ourselves because we couldn't believe the day finally came.

Here's the video Jack made for Carter:

I also wanted to mention that Ava, another CDH survivor, had her followup surgery the other day and is amazing everyone with a great recovery so far. Like a lot of CDH kids, Ava likes to keep the docs on their toes so keep your fingers crossed that she lets them have an easy time this go around!

Vic

2 comments:

*super dude and super dog* said...: Thank you so much! When Carter wakes up tomorrow morning, we'll show him the video. Your story has been such an inspiration to us from the time we found out about Carter's CDH. Thank you for sharing and helping us along the way.; January 31, 2009 at 10:20 PM
Fer said...: WELCOME HOME CARTER!!!!!!; February 1, 2009 at 12:58 PM

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Jack's Diagnosis and Recovery

At our 19 week ultrasound Jack was diagnosed with CDH. One week later James and I went to Children's National Medical Center in Washington, D.C. for more extensive analysis. We had a fetal MRI and saw that his hernia was on the left side (the most common) and at that time his liver was 'up' or in his chest. His heart was pushed to the right in his chest and he had a normal sized right lung and a very small left lung (about 1/5 the normal size). Overall his CDH was classified as severe with a Lung to Head (LHR) ratio of 0.8. His echocardiogram showed that his heart was beating strong and there was no underlying congenital heart defect. His amnio was also normal. The prognosis was 20-50% chance of survival at birth. The struggle we faced with this diagnosis was that there is little correlation between prenatal diagnostic test results and outcome at birth. Some babies with mild defects do poorly and some with severe defects pull through and do very well. All we could do was try to be optimistic and hope and pray that Jack would be a strong baby and fight hard. On August 20, 2007 John Verner Jensen "Jack" was born by C-section at The Johns Hopkins Hospital. He weighed 6 pounds 11 ounces and was 20 inches long. Within hours of birth he was placed on ECMO (heart-lung bypass). He had a 10 day run on ECMO and went to his hernia repair surgery on this machine. He was missing 90% of his left diaphragm, had his entire stomach, spleen, and parts of his small and large intestines and liver in his chest and he required a gortex patch. Jack came out of surgery off ECMO but with the cannulas still in place until later that night. He had a really hard night after surgery and we nearly lost him. We were later told his blood gases should have been unsurvivable and that it was pure will and not medicine that saved him. After 81 days in hospital we brought Jack home breathing room air and needing only an NG (naso-gastric) feeding tube. After 27 days home he reherniated and we had to go back for emergency surgery at Johns Hopkins. His awesome surgeons literally patched him back up and after another 16 days in hospital he returned home on Dec 21, 2007 - just in time for his first Christmas. Since then Jack has tackled his eating issues and is NG-tube free! He does not require any medication. We are extremely grateful for his incredible medical team and all his friends and family for their support, kind words, thoughts and prayers.

Jack's CarePage chronicles his day-to-day journey from diagnosis to approximately 6 months old (before we started blogging). See the link below.