Jack Jensen's Blog: City of Frederick Proclamation Presentation

Wednesday, March 19, 2008

City of Frederick Proclamation Presentation

What a day today! I attended the Mayor & Alderman meeting at City Hall and they had a formal presentation where they gave me a framed Proclamation from the City of Frederick dedicating March 31st as CDH Awareness Day in Frederick, MD. The really awesome part was that right before it started they told me it would be aired live so I was able to call my mom and she and Jack watched it at home. They've been running a loop of it all day on our local cable TV channel. I'm trying to figure out a way to tape it so I can post it here. They read the entire proclamation and I gave them a BOH brochure and ribbon as well as the photo of Jack wearing his bib that says "I'm a Johns Hopkins ECMO & CDH Survivor". On the TV they zoomed in on the photo when they held it up! At the end they asked me to say a few words so I thanked them for the Proclamation and said that I accepted it "in honor of my son, Jack Jensen and in memory of Andrew Burdette and for all families affected by CDH". Andrew passed away in late February from CDH and I met his mom a few weeks prior. She also lives in Frederick. Finally, at the end they thanked me for educating them about CDH and said they had never heard of it before so they were glad I was doing this. It felt really good. The more people that hear about CDH the better.

Here are some photos. This was the first time I actually got 'dressed up' since Jack was born. I fit into some pre-pregnancy clothes (barely!)..wahoo!

Love
Vic

3 comments:

joshua said...: I gotta say that this is one of the very best blogs I've ever visited yet.

Congrats! Take my words as a blossom blessing as I'm bloging around.

PALAVROSSAVRVS REX; March 19, 2008 at 6:57 PM
Anonymous said...: Hi there!
Jack looks so Great! He is such a camera ham! ha ha ha! I am so happy to see the CDH day is official! Can't wait to see you guys sunday! Love you lots! happy Easter!

Auntie Cathy; March 20, 2008 at 1:38 PM
Joe LaSala said...: So proud of you! That is great!

It was so nice to finally meet Jack on Sunday. Everyone looks so healthy and happy (and husky in George's case).

Hope you had a good rest of your holiday!
joe; March 24, 2008 at 1:57 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.