Jack Jensen's Blog: Jack UNPLUGGED!

Wednesday, January 23, 2008

Jack UNPLUGGED!

We finally did it. Jack is unplugged - no more NG tube. He is bottle feeding and so far gaining weight and doing really well. We don't actually have any doctors appointments for a week or 2! Our next big focus is going to be trying to coordinate a blood drive on March 31, 2008 in Frederick, MD. Maryland has officially declared that day "Congenital Diaphragmatic Hernia Awareness Day" and I think the perfect way to raise awareness and give back is to help run a blood drive. While Jack was in the hospital he received a tremendous amount of blood. Every day on ECMO he go blood product and even on his last hospitalization for the reherniation surgery he was transfused twice! I am hoping that if we can get the local newspaper to run a story about Jack's amazing journey it will inspire people to go out and donate blood. In the meantime we are really excited because Jack is featured in a Johns Hopkins public relations banner that is at the Columbia Mall. The photo is above, Jack is all the way on the left. Hopkins is also featuring Jack's story in their quarterly newsletter. I think it will come out in March which would be perfect timing to coincide with CDH Awareness Day.
Thanks for all of you that check our blog. If you're new to the blog you can find a link to Jack's CarePage which is where I have all his daily posts. Be prepared for a long sit at the computer though if you plan on reading all of it! He was born August 20, 2007 so that's a good place to start.
Love
Vic

2 comments:

Gillian Brown said...: Jack looks great.So glad to hear he's living life unplugged!It's great seeing their little faces without the tubes.He's doing so well - you must be so proud of your special boy!
Gil (Kadens Mum); January 25, 2008 at 7:25 PM
The Nanny said...: Yeah, Jack!!!; February 1, 2008 at 11:39 AM

Post a Comment

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.