Jack Jensen's Blog: Jack's Visit to Hopkins

Tuesday, March 18, 2008

Jack's Visit to Hopkins

Jack had 2 appts this week and the little guy is doing FANTASTIC! He had his 6 month pediatrician appt yesterday (even though he'll be 7 months on Thursday!). The doctor was really pleased with his progress. She said he's a very social guy (as if we didn't know that already!). He's on target developmentally in terms of his mental/social aspects. He is very alert and curious. He also has very good control of his hands and is a fast learner. I think that if we don't want him to know something we better not let him see us do it. He's like a little monkey the way he imitates us. His only weakness is in his weight and physical strength. He is not very strong in his shoulders and torso but we're working on that with his occupational therapist. I think with some more time he'll catch up.

Today we saw his surgeon. We had a great visit and don't have to return for follow up until 1 year from now! He was really pleased with how Jack healed up. We also visited the ECMO unit at Hopkins and saw Gary (ECMO coordinator). It was so great to catch up with him and he showed us the CDH bulletin board he made for Awareness Day (see photo in this post). It was so awesome and even had a photo from a surgery that showed the hole in the diaphragm. Jack also got to visit with the Hopkins clowns. They visited him when he was around 10-20 days old. We took a few photos of him with them. I like the new photos MUCH better!

Overall, the little man is doing just great. He is eating well and although he's still under the 3rd percentile for weight he's sticking to his curve just fine which is the most important thing. He now weighs 14 pounds 8.5 oz and is 26.5 inches long. He can give a Razz, clap his hands and last night he was eyeing my mom drink her soda so we gave him a regular cup with water and he grabbed it, brought it to his face and started to drink it! No sippy cups for Jack! Haha. He watches people so intensely then just decides he's going to do something and does it. I think he'll be very independent and likely be hell on wheels when he gets mobile but we'll love every minute of it!

Love
Vic, James & Jack

2 comments:

amy said...: He looks amazing Vic! Congrats on the clean bill of health! Fight on little man!!!!!; March 18, 2008 at 11:57 PM
Elizabeth said...: Love it! Absolutely love it. I so recall those pictures of the clowns with Jack, I like these better too.

And yes, he will be hell on wheels and you will enjoy EVERY minute of it!; March 22, 2008 at 1:59 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.