Jack Jensen's Blog: Reflux monster!

Wednesday, August 19, 2009

Reflux monster!

We've been continuing to have major issues with Anika. The soy formula helped her poop get more solid, but she is showing more signs of reflux. I called our family doc in CT and told hiM how she was screaming in agony so bad that her feet turned blue. He told us to take her to the ER in Albany, NY last night. They did an ultrasound and xray- all normal. They think she has severe reflux and colic. I've been trying all day to get her script filled but it is for orilosec powder and apparently hard to get. We should have it by tomorrow.

Today she is resting a bit better. She's eating less, maybe that helps?

We also had to take Jack to the urgent care on Monday cause of a suspected bug bite that blistered out of control. We still don't know what caused it but the doc cultured it and drained it. Between the 2 kids, it's not been very relaxing.

Tomorrow is Jack's 2nd birthday and Anika will be 1 month old! Both kids will be baptised on Sunday and then we'll have Jack's birthday party.

Keep your fingers crossed that Anika starts to feel better soon!
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4 comments:

Anonymous said...: If it isn't one thing, it's another! Praying the medicine works for Anika and she can find some relief. Poor baby! And I pray that Jack's bite clears up--hopefully it isn't a spider bite--spiders have been horrible this year. Praying things clear up fast and you get a little break too.
Happy early birthday to Super-Jack!; August 19, 2009 at 2:45 PM
Emily said...: oh my, poor little girl, poor Jack and poor mom and dad! what a lot to deal with on your "relaxing" trip to CT. Hope all is well again soon! and a very happy 2nd birthday to Jack tomorrow!!; August 19, 2009 at 3:42 PM
Aep said...: Sorry to hear about all you are dealing with. I hope that Anika starts to feel better soon and so does Jack! Happy 1 month old bday to Anika and Happy 2nd Bday to Jack!!!!
Hugs, Ana and Marco; August 19, 2009 at 3:58 PM
Jen said...: Sorry the kiddos (and you guys) are going through all this. I hope they both feel better very very soon!! Happy 2nd Bday to Jack and 1 Month to Anika!! It will be a very special baptism for you all!

Jen; August 19, 2009 at 4:07 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.