Jack Jensen's Blog: Another CDH baby gets his wings

Wednesday, July 16, 2008

Another CDH baby gets his wings

Please pray for April, Russell and their family. Early this morning their precious boy Seth decided wings were more fun then feet. This family has been through so much as Seth fought to get better. He was on ECMO and then they were hoping for surgery this week but he was having issues getting rid of fluid. I can not even imagine how they are feeling right now but I'm sure they will appreciate your thoughts and prayers.

You can visit Seth's CaringBridge Page HERE.

Vic

1 comment:

Anonymous said...: Hello Vic, James & Little Jack. My name is John Major and I was friends with James back in High school in Londonderry (Tell'em big "hippy" John, and he should remember) and a mutual friend of ours (Aaron Slater) told me about baby Jack and the website. Im so happy to hear that you and James have a little one and my thoughts and prayers are with your family through these trying times (but at least what Im reading on the posts seems positive which is a great thing).
It has been quite sometime since I have spoken to James so if you can please let him know that I have written and would love a line back, that would be great. My email address is SNHBOY0575@aol.com.
All my best wishes for baby Jack, you and James.
Thanks!; July 16, 2008 at 4:26 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.