Jack Jensen's Blog: The blood drive was a success!

Monday, March 31, 2008

The blood drive was a success!

Today we had our CDH blood drive and it was a success. Tracey (Andrew Martin's mom) and Emily (Andrew's aunt) were greeters with me and we were there for the 6 hours of the drive. We had more donors then our goal but we had quite a few that couldn't donate after the questionaires because of travel history etc and we had a few that didn't finish because of clotting and other reasons so in the end we were under the goal number but they said that for the first time running a drive it was really good. We were able to hand out ribbons, brochures and bracelets that we got from Breath of Hope and we had the Maryland and Frederick Proclamations as well as other reading material. I gave blood for the first time. We actually had a few first-time donors. Gina (Wyatt's mom) drove all the way to Frederick. I'm posting a photo of the 3 CDH moms together. Tracey is shown on the left, Gina in the middle (black shirt) and I'm on the right. I think we did our boys proud today. Thanks to everyone from my work that came out for the drive and to everyone in Tracey and Emily's families. They all turned out in great numbers.

I hope all the other families that had events today had great success and were able to spread the word about CDH.

Love
Vic

2 comments:

Aep said...: Congrats on a job well done!! Jack will be proud of his mommy!! Love all of Jack's pics and glad you had such a great time in NY (must have been nice)!!
Hugs to Jack!
Ana and Marco
Happy CDH day!!; March 31, 2008 at 9:47 PM
As told by her mom, Sandy... said...: Hi! I was doing a search on Frederick Maryland photography blogs and found yours. I'm so glad I did!!! I work in Frederick for the county and am a mom to a little miracle baby myself www.madelinewagerman.blogspot.com. My perinatal doctor was Dr. Kramer too and we go to Children's DC more times than I'd like!

Anyway, I can't wait to read all about your inspiring little boy. I can't believe I missed that article in the FNP. I totally would've caught that if I had been paying attention that day.

I love the One True Media clip!

Congrats Baby Jack on the upcoming birthday!

Sandy; April 3, 2008 at 3:01 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.