Jack Jensen's Blog: Jack's weekly visit.... 27 weeks, 4 days

Friday, June 1, 2007

Jack's weekly visit.... 27 weeks, 4 days

I saw Dr. Kramer today and the little guy did pretty darn good. This week Dr. Kramer thinks the liver is back down and he saw a bit of lung growth. He cautioned me that things will keep moving...blah blah blah. I don't care. I'm still very excited every time I hear him say "liver down and lung growth!" The levels of amniotic fluid didn't change a whole lot. I'm at a value of 22 and 24 is the point where he said I'd have polyhydramnios (excessive fluid). That would potentially increase the risk of preterm labor. It was good news that things didn't worsen over the week. The last thing we did was check out all this pain I'm having. On Tuesday Dr. Kramer sent me for liver function tests and they all came back normal...although the pain has definitely been getting worse. When they scanned my liver and gall bladder today they said they looked beautiful. Then they had me roll away from the screen to scan my kidneys. I heard the sonographer say "WHOA!" and Dr. Kramer followed with "Oh wow!"....never a good thing. I guess my right ureter (the tube that runs from your kidney to the bladder) is "severely" enlarged. They were quite impressed with it actually. They think the pain might be referred pain to the liver area but they don't know. He immediately sent me to the urologist but she's in surgery on Fridays so I have an appt first thing Monday morning. It could be a stone but they're not sure. All I know is that if I get a stone during pregnancy I'm going to be really mad. We'll just have to wait and see what's going on and I'll just try to stay off my feet and lay down on my left side...just about the only position that relieves the pain a little. I can't wait for a day in this pregnancy when both Jack and I are feeling good. I guess the apple doesn't fall far from the tree. At least I'm in good spirits though. It's at the point where it's funny that yet another hurdle is in front of us. I think I'll just kick it down instead of jumping...haha.

Love
Vic

PS: no pictures today because Jack has his face smooshed against the placenta.

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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.