Jack Jensen's Blog: Memorial Day Weekend

Monday, May 25, 2009

Memorial Day Weekend

James, Jack and I spent Memorial weekend up in NY and had LOTS of visitors! On Saturday James' brother Jeff and his 2 kids, Dade & Emma, drove down from New Hampshire to spend the day with us. All the kids had a blast fishing, running around in the field, sitting on the tractor with my dad (no, it wasn't moving) and eating lots of food. James was even playing hurling with Dade & Emma. There are lots of photos below. On Sat night I spent the evening out with my Uncle Len. We went out for some good ol' NY pizza then saw Angels & Demons at the Catskill Movie Theatre. I love that theatre! It's so old and feels like you're stepping back in time when you go there. The picture and sound are just as good but it's never as crowded as the mega theatres that are around our area in Maryland. It was great. For those of you who haven't seen the movie - you have to check it out. I liked it much better then The DaVinci Code and it wasn't just because Tom Hanks got rid of his mullet! When I got back to the house around 9:30 pm I found our good friends Amy & Joe there. Joe was my very first friend that I can remember. We grew up together in Queens, NY and ironically, his family owns a house down the road from my parents' farm in the Catskills. It's great because we usually get to visit on long weekends and other times we're all upstate.

On Sunday James' parents came to visit. My mom cooked up a big German dinner and James' parents brought the most delicious desserts ever!! Jack had a great time getting spoiled by both sets of grandparents. Jack got his very own play lawnmower and a Boston Red Sox track suit (among other things) from Grandma Stacy & Grandpa Jim. He's so spoiled :-)

Well, there are loads of photos below.....Enjoy!
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.