Thursday, March 19, 2009

We Have Don't Have an Answer *Update

Wow, so much in one week. This is day 7, and our final day in the hospital. We feel more settled about no dignosis after talking with Dr. M. According to him it is not at all odd to have a failure to thrive baby come into the hospital, have tons of tests run, and then find absolutly nothing...and them grow. 60% of the babies admitted for "failure to thrive" or low weight gain are never explained...and that was their explanation from him today. I am ok with that. Baby J is on a prescription for PediaSure that he will continue to use until discontinued by the GI doctors. He will also continue to take the medication he has been on here, at home. They are explaining his fussiness and gassiness to having so many bottles after he has been exclusively breastfed, except for our unsucessful formula trials. He is not used to all the air from a nipple.
I am going to say that it is a MIRACLE. They were just sure he had Celiac, and he doensn't. I would just like to think that God chose to heal his body. Thank you for your prayers. PRAISE GOD for this.

This post may not be very put together, and if I seem upset, I am just really tired. Baby J slept form 8:30pm-10:00pm....and then from about 5:00am-8:30am. The rest of the night he cried, no matter what we did. The nurses finally gave him some "gas drops" and he settled down a little after 5, only to be awoken by the cleaning lady who walked in and started swishing open trash bags right next to his bed before I could ask her not to. He woke up really cranky, and has been crying all morning. We're not crying, we're just cranky.

He does NOT HAVE Celiac disease. That is such an answer to prayer. We were so scared he did, and he was a "classic case" according to two of our GI doctors. His EGD test also pointed to Celiac from the way his intestines looked, but the biopsies were negative. What a relief that he does not have to live with that condition. We could have dealt with it, but SO are happy not to.

*the hospital is having a fire drill right now...the alarms are going off and blinking, and some automated lady is talking to us, but we don't have to go anywhere...what a good drill, huh?

So what is the answer? Well there isn't one. They don't have any answers actually, but because he is growing, he gets to go home. (I'm a little confused though, because he only gained while on the IV, and lost an ounce when he was off, which isn't bad or anything, but he had just had a 7oz bottle literally seconds before he got weighed. He hasn't been weighed today.)

Some speculations they have are;
He has a milk protein sensitivity...but PediaSure is milk based, so that doesn't add up.
His digestive system is immature
Even though he was full and happy he wasn't getting enough calories so he didn't grow. He was nursing 6 times a day, fully satisfied when he was done. He also ate close to a cup of food at each table meal consisting of quite a variety of fruits and veggies, oatmeal, rice cereal, tofu, and egg yolks. (he also was having several wet diapers and two BMs a day)

Some questions we have are;
Will he have to continue on his medication he's been given here? With is he isn't supposed to be vomiting or spitting up...but he is spitting up more than he ever has in his life.
Why is his face swollen? His little face is swollen today and no one seems to be concerned-maybe from all the crying he does?
Why is he crying and fussy so bad? I'm talking inconsolable screaming at times-as in last night, and again as I write this. We only have ever had this when he's been on a formula we tried when he was really young...and he is really gassy.

Bottom line we are so glad he doesn't have Celiac disease, we are super tired of being in the hospital, we are still confused.


Megan said...

So glad it is not Celiac! I'm sorry that there is still no answer though, how confusing! Still praying!

ktheath said...

Isaiah 41:10 "So do not fear, for I am with you; do not be dinmayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Praying - KTHeath

MELISSA said...

Rejoicing with you that it isn't Celiac! I hope and pray you will have answers soon, or at least see a major improvement so you can go home!

Mandy said...

SO glad he doesn't have celiac!!!

We too never got a true diagnosis of anything from our 3-4 hospitalizations.

The Pelhams said...

Try taking him to a chiropractor! I have 3 children and we see the chiro all the time. My oldest is 3 youngest is 15 months.They all had adjustments when they were 3 days old. Go to and look for an advanced proficiency doctor in your area. Tell them what has been going on. I think you might be shocked what a few adjustments could do for him. You aren't out anything. Most chiros are Christians too, which is also very nice!