Jack Jensen's Blog: 10-50-90 - The 15 month checkup!

Saturday, November 22, 2008

10-50-90 - The 15 month checkup!

Jack had his 15 month checkup yesterday. He did GREAT! You're probably wondering what the numbers in the title are. Our little pork chop has hit the 10th percentile for weight! In the past 3 months he went from not being on the chart to 3rd, 5th and now 10th percentile. He weighs 21 pounds and 2 oz. The other numbers are his height (50th percentile) and head (90th). Yes, he is like a bobble head but it's because of all those brains...hee hee. He can say about 10 words now (MaMa, DaDa, Elmo, Duck, Dog, Car, Up, More, Baba (Jack-ese for bottle). OK, that's all I can remember but I feel like it was more. Anyway, the doctor was really impressed with his development and said he's ahead for verbal and fine motor skills. It's like we hit the magic point of CDH catch-up that we hear about. He has been walking for a while but was preferentially crawling. Yesterday he made a switch and was just walking all over and followed James and I like a shadow. It's so cute.

We still have to go to get a chest xray and a hearing test. These are normal things that the American Pediatric Association recommend as followup at the 15 month checkup for CDH survivors. Because he was on ECMO he has an increased risk of hearing loss but we see no signs of that. Better to check and get a baseline though.

The only bad thing is that Jack is now terrified of the doctor's office. As soon as we go in the room and I start to undress him he cries. He stands on the table and crawls up onto me with his arms and legs wrapped so tight we have to pry him off. He also puts his head on my shoulder and avoids eye contact with the doctor as if he's thinking that if he can't see the doc then the doc can't see him. I'm sure this is because of all the visits he has had and the beginning of RSV season and those shots once per month. I really need to think of something positive. Maybe I'll bring an Elmo toy for the doc to give him but Jack is pretty smart and I suspect he'll see right through that.

That's about it from here. I will try to get some video to post this weekend.

1 comment:

Elizabeth said...: Actually it could be "perfectly almost normal" - Noah went throught that too - and rarely went to the doctor. They also associate pain too - but they get this odd "stranger anxiety" issue too. Not completely bad but can be so frustrating to parents.

Noah also used to close his eyes - he figured if he couldn't see them - they couldn't see HIM!

Glad he is doing so well ...; November 26, 2008 at 8:33 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.