Jack Jensen's Blog: Visits with Friends & Family

Saturday, May 24, 2008

Visits with Friends & Family

So far we've had a great Memorial Day weekend. Yesterday Jack and I attended a going away picnic for a colleague of mine at Fort Detrick. It was the first time a lot of my co-workers saw Jack and they all followed his progress on his CarePage. It was also the first time since my friend Lisa saw Jack since he was on ECMO. I was so happy to see her with him now that he's healthy! Late in the afternoon Jack and I took a walk and we visited Dr. Kramer's office. For those that don't know, Dr. Kramer was my high risk OB. He and his staff really carried us through the most difficult time in mine and James' lives and were the first ones to give us hope and always support during the pregnancy. This was the first time Dr. Kramer met Jack in person. For me it felt like we came full circle and it meant so much to me to see him hold Jack after all we went through together. I know Dr. Kramer would be modest and say it was James, Jack and I that pulled through everything but I can guarantee that without his care and support we wouldn't have gotten so far into the pregnancy and I really think that had a major effect on Jack's survival. I'll never be able to thank him enough. We also got to visit with Becky (sonographer), Jaime (phlebotomist/front desk) and all the other ladies at the office. We formed a wonderful relationship with all of them so it was great to catch up. I took a photo of Jack with Dr. Kramer but my camera jammed up so it's really out of focus but I want to post it anyway. I'll visit again in the next few weeks and get another photo. I totally forgot to get one of Jack with 'his ladies' so I have to do that too!

Yesterday Jack's grandma & grandpa from N.H. arrived for the long weekend. This morning we went to the first day of the Summer 2008 Farmer's Market in Frederick. I think Jack enjoyed it but I can't be sure because he slept through the whole thing!

The rest of the pictures are some random ones I took today. Jack is really great at sitting up by himself now. We just have to teach him to go from his belly to sitting and I think he'll be a happy camper! Oh yeah - it was really warm out today so I let Jack dip his feet in the pool. Don't worry, I had a death grip on him!! He loved watching the sun reflect off the water. I can't wait until it's warm enough to actually go in the water. I know he'll love it.

I hope everyone has a great Memorial Weekend (May long weekend for the Canadians). Please keep some other CDH babies in your thoughts, prayers & lung function chants: Jack's best bud Wyatt has reherniated for a 3rd time. Please pray that he doesn't get symptomatic since they want him to grow bigger and stronger before they attempt the repair. Please pray that baby Sophia gets to leave the NICU and go home soon. They were expecting her to go home this weekend but it got delayed. It's so hard to be so close to going home and then get delayed. Pray for strength for Jennifer, Kenny & family. Finally, a CDH baby was born this week and his name is Jaxon. I think the CarePage name is TheMayers. So far Jaxson is doing great and had his repair surgery on Friday already. Go Jaxson!!!!

And now... more pics.....

1 comment:

Fer said...: I'm glad you had such a lovely weekend. I LOVE the pictures of Jack :); May 25, 2008 at 7:29 PM

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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.