Jack Jensen's Blog: Under 1 week left!

Tuesday, August 14, 2007

Under 1 week left!

38 weeks and 1 day....

We just had our last visit to Dr. Kramer's office. We got the funniest picture of Jack yet. I kept joking that he was preparing for his fight by trying to punch and kick his way out. When you see the 3D picture you can see he's got both arms raised and fists at the ready! He also still has his legs up and it completely butt first. Crazy kid.

Jack is measuring overall in the 14th percentile ...his head is measuring big (40 weeks) but his abdomen is small (less then 5th percentile) because of the CDH so that brings his numbers down. Despite that they are still estimating him at 6 lbs but are sure he'll be more than that. His heartrate and the amniotic fluid levels were great. We were able to see that he has quite a lot of liver up in his chest now as well as his whole stomach and a lot of bowel. The doctor we saw today said it must be a big hole and he'll definitely need a gortex patch. It was hard to hear but at the same time nothing we didn't really know already.

That's about it for today. Thursday we head down to Johns Hopkins for more fetal monitoring etc. The C-section is still scheduled for Monday August 20th @ 9AM. Once we're settled I'll post my hospital room & phone number in "Contact Info-Visiting Instructions" under CarePage tools. I don't know if our cell phones will be allowed in the rooms. We're excited that my parents and James' sister Catherine will be there for Jack's birth. We're also having him baptized on Monday and a photographer from "Now I Lay Me Down to Sleep" will be there to take photos. She actually came to our home on Sunday and took belly photos and pics of me & James. It's a wonderful volunteer organization for parents! One of the CDH moms that I met online set this up for us which was so nice.

Enjoy the picture of our little fighter. We'll post another update on Thursday evening.
Love
Vic & James (& Jack)

2 comments:

Cindy said...: That picture is great. Looks like he is a feisty little guy!

I'll be praying for y'all on Monday.; August 15, 2007 at 1:58 PM
The Goddess G said...: I *love* the picture!!! I can almost hear the Rocky theme playing in the background.

I'm so glad the photographer came to take those pictures...and even more glad that she'll be on hand that day. I think they will be great things to tell and show all of Jack's many girlfriends. That kid is so cute I know they'll just be lined up around the corner.

Thinking of you all and keeping you in my prayers.
~Carole; August 16, 2007 at 7:38 AM

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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.