Jack Jensen's Blog: The week of smiles and stones....

Friday, June 8, 2007

The week of smiles and stones....

I think I set a record this week...6 doctor appts in 5 days! I'll start with Jack since that's the most important. We saw Dr. Kramer today. My new hypothesis that when Jack is in breech position his liver is down seems to hold water. He's been kicking my bladder all week so I was hoping he'd be breech this week and he was. Dr. Kramer thinks that his whole liver was down as well! We also saw some lung tissue, mostly on the left side. My levels of amniotic fluid also did not increase since last week so that was fantastic news. The other great thing was that we saw him taking practice breaths today. He's giving that diaphragm a workout! Good boy Jack! I also convinced the sonographer to take a look by 3D and I saw him moving in 3D!!!! He waved his arm up by his face then tilted his chin up and totally smiled at us! It was amazing. I'm convinced that he looks like James...he's so cute (OK- maybe I'm a little biased). All 5 new photos are on the gallery so have a look.

As for me...evidently I'm the incredible stone making woman. To make a long story short on Thursday we found out that in addition to the hydonephrosis I have a kidney stone in my right kidney. The urologist wanted to play it safe and rule out a gallbladder issue so I was sent for another ultrasound today. They said they wouldn't tell me the results but when they had trouble seeing she had me sit up and I could see the screen. I commented that the liver looked cool and "oh...that's the gallbladder there isn't it?" The sonographer said yes and started moving over it. Within a few seconds I think my comment was "oh crap...a stone?!" She confirmed it. It was pretty impressive. So, I ask you....what are the odds of getting both a kidney stone and a gall stone at the same time? At least we know why I'm in so much pain. I have no idea what they'll do at this point but I'm pretty sure Dr. Kramer will laugh when I tell him. When I saw him first this morning I told him at least we've run out of things to go wrong and organs capable of making stones. He just looked at me and said "...knowing you...I doubt it. I've never seen a chart like this." Poor guy.

oh well, that's the scoop for this week. I think I'll go buy a lottery ticket now.....

Love
Vic

1 comment:

Unknown said...: -.-; June 11, 2007 at 8:16 AM

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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.