Jack Jensen's Blog: Still hanging in there.....

Tuesday, August 7, 2007

Still hanging in there.....

James and I went to Hopkins today. They did some fetal monitoring where they hooked some monitors up to my belly with belts and it monitored Jack's heartrate and any contractions. Well, of course it wouldn't be Jack if he didn't give us a good scare. His heartrate was around 180-high 190's for 40 minutes. It only slowed to around 160-170 when I had contractions. We were supposed to meet the high risk OB for an exam after that and she met us in the hall and said "OK, let's walk and talk". We started to get really nervous, particularly when we entered labor & delivery. Long story short they admited me and hooked me back up and monitored for several hours and did tests to check if my water had broken. After all that Jack's heartrate normalized and the membranes hadn't ruptured. I haven't dilated much more then what I was on Friday so they let us go home and they scheduled the C-section for Monday August 20th. I will be monitored even more often now and they said it may happen before the 20th but we at least have that date set which we're happy about. We'll see our local high risk OB on Thursday so we'll see how things are. Some good news though...the amniotic fluid levels are down to 12!!! Hopefully Jack will hold on another week or so. They say that every day at this point is critical for maturity of the lung tissue he has.

Thanks everyone for your prayers and thoughts. We really really REALLY appreciate it!
Love
Vic & James & Jack

1 comment:

Cindy said...: I will be thinking of y'all on the 20th! Keep us posted.; August 9, 2007 at 9:15 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.