Jack Jensen's Blog: Aug 9th office visit to Dr. Kramer

Monday, August 13, 2007

Aug 9th office visit to Dr. Kramer

Nothing much to report today but I know people are getting nervous now if we don't update after appts since we're so close so I figured I'd better post something. We went to Dr. Kramer's office today and Jack is still breech - butt first actually. At this point it is "highly unlikely" that he'll turn. His heartrate and other biophysical parameters that they measure were all quite good. The amniotic fluid was 15 cm...right in the normal range. It looks like we're in a hold pattern now and hoping I don't go into labor on my own before the 20th. Next week we see the high risk OB in Frederick on Tuesday and go to Hopkins on Thursday for full fetal monitoring and an appt. We have pre-op at noon on Sun Aug 19th and the C-section is officially scheduled for Monday Aug 20th @ 9am. Until then we're just laying low and trying to store up our energy until the big day! Our bags are all packed and we're getting really excited to meet our little man.

Love
Vic

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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.