Jack Jensen's Blog: Welcome to Jack's Blog

Monday, May 7, 2007

Welcome to Jack's Blog

Welcome to Jack's Blog everyone! I wanted to start a blog for family and friends to visit and to chronicle our journey through this pregnancy. I visited several blogs of other CDH moms and it's so helpful to read about their experiences. Some make me hopeful, some are sad but all are inspirational. I hope other expectant moms will find this blog helpful since I'll write about my experience and also try to put as many informational links as possible. I know that messages from family and friends also help lift my spirits on days when I'm feeling a bit down. It helps to know that so many people are thinking of Jack and sending him prayers and good thoughts. This blog is dedicated to Jack and all the other CDH angels that have come before him and will follow. These babies are all special and deserve our love, support and strength.

Love
Vicki

1 comment:

Unknown said...: Whatup Little Man Jack!!!! You guys are in our thoughts. Hope all is well. Cathy and I are going to try to plan a trip down there soon.

Love,
Chris & Cathy oh and Mook and Sarah too; May 8, 2007 at 6:36 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.