Jack Jensen's Blog: T-minus 4 days!

Thursday, August 16, 2007

T-minus 4 days!

We had a FANTASTIC visit to Hopkins this morning. For once everything went smoothly and we were out of there within 3 hours (a record for us!). Jack did great during the fetal monitoring, the fluid levels were exactly mid-range of normal, his heartrate was good and he was still doing practice breathing. Since he's still breech we're on schedule for the C-section on Monday at 9AM. We met with some of the high risk OBs today and they answered all of our MANY questions. We also learned that when they transfer Jack from the operating room in labor/delivery to the NICU they'll put him in an isolette and wheel him past my parents and sister and brother in law so they can get a quick look at him. They'll let them stay in a special waiting area just for that. They will also wheel Jack past my head so I can take a quick look too. I was so worried that it would be hours before I could see him. For the first time I feel at peace with this whole thing and I'm feeling excited to meet him on Monday. Jack's bag is packed with all the stuff he can have in the NICU. We even got him a little hair brush and comb for all that hair of his!

So, this will be the last update until Jack is born. I can't believe it. At this point we'll probably just update Jack's CarePage only since my dad can do that for me. Please feel free to follow Jack's journey there:

www.carepages.com
CarePage Name = JackJensen

Thanks to everyone for all your support and prayers. To all the CDH moms....please say extra 'lung function' chants on Monday morning!

All our love,
Vic, James & Jack

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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.