Jack Jensen's Blog: Linus

Thursday, May 14, 2009

Linus

Jack has turned into Linus from Charlie Brown. He LOVES his blanket. Ironically, this is the first baby item we received for Jack when I was pregnant. He received it as a gift from Breath of Hope, Inc. when I joined that support group. Funny that of all his blankets, that's the one he seems to be attached to!

He's doing well. I weighed him yesterday and he's up to 23 pounds 6.5 oz. He's been a pooping machine the past few days but doesn't seem sick otherwise. Nothing slows him down! Oh - he learned how to draw a circle and then he points to it and says at the top of his lungs, "A BALL!!"

Things are going well with the girl (baby #2). I went for my RhoGam shot Tuesday in case she is Rh + (I'm Rh -). Next week I have the glucose challenge test and usual appt with Dr. Kramer.

Finally, I want to congratulate my friend Tracey on the birth of her BEAUTIFUL son, Nicholas Andrew Burdette. Nicholas decided to show up early (32 weeks) so he's in the NICU at Frederick Memorial. He's gaining weight and is just adorable. I've been able to visit him twice and even got to hold him. I'm sure his big brother Andrew is looking down and protecting him. Big sister Tara is just in love with her new baby brother. She holds him so cute!

Well, better head off to work. It's so hard to leave Jack when he is so cute (see the pictures above from 5 minutes ago!).

Vic

2 comments:

Aep said...: So cute!!! Such love for his blanket :)
Marco has a bunny that he needs to sleep with us and it is his love :)
Glad all is well with baby girl!
Hugs, Ana and Marco; May 14, 2009 at 8:15 PM
*super dude and super dog* said...: How is it possible for one little boy to get cuter every single day? I don't know how you can leave such a cutie to go to work. I hope things are going well with Jack's little sister--she'll be here before you know it!; May 14, 2009 at 11:49 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.