More Backtracking--Our Week at TCH

So, now for some more backtracking...How did we get here?

Well, we loaded Beckett and ourselves (and that is pretty much all) up in our car for a quick last minute day trip to Houston where we were going to see a GI specialist at Texas Children's for Beckett's major reflux and weight loss. When we arrived, Beckett weighed 8 lbs 5 ounces--I think. We spoke with the doctor briefly, gave her Beckett's health history, and she did the typical things such as listening to his belly and pushing on it. Then, the shock of our year, she told us she was going to admit him for monitoring and testing, and we could expect to be there for at least 3 days. He was 27 days old when he received the label, "failure to thrive." I think we both felt overwhelmed and unprepared. We had not packed bags for that kind of stay, we had not made any plans for Brant. We actually hadn't even told Brant "bye" in any special way because we didn't even know we were going to Houston until after he was at school. Calmly, we made phone calls and plans fell into place. Kyle even made a quick trip to Target to buy clothes and toiletries for us.

We were escorted up to the 12th floor (the yellow GI floor) and taken to the parents lounge area. They showed us the refridgerator we could use for food, cups, ice, drinks, etc...I was still in disbelief and couldn't imagine that we would be there long enough to use the fridge (we were.)! Anyways, we were eventually taken to his room with a huge silver metal crib for my tiny baby. I will probably always remember that crib...It was definitely not very cozy looking.

Texas Children's Hospital is different then any hospital I have ever been to because it is a teaching hospital. We met interns and fellows and attendings. And I quickly learned that I could get more information on Beckett by standing at the door eavesdropping during their meeting (they meet outside the patient's room and discuss everything before walking in) then I could when they came in to talk to Kyle and I. Also, one does not sleep much when at the hospital with a newborn between waking the baby to eat every 3 hours and people coming in to test his vitals every 4 hours...no one sleeps. Finally, I learned that shows like Grey's Anatomy and House are grossly underestimating the mess of the family sleeping in the room with a patient. Those shows do not show you where anyone sleeps or where all the junk and snacks and clothes are. One more thing that makes them unrealistic.

That night, at midnight, (yes, nurses have the best timing) the testing began. They drew several viles of blood and put an IV in his foot. It looked like a cast because of the way they have to secure it. It was as big as he was! The week carried on with multiple testings, and they quickly ruled out Cystic Fibrosis and any kind of anatomical problems with his GI track. They beefed up his formula to be higher in calories. Still, no substantial gain and definitely no improbement in the vomit. After bloodwork that indicated a high(? ) number of eosinophils (white blood cells that can indicate allergies), Beckett was switched to an elemental formula. The over-the-counter hypoallergenic formulas like the one Brant was on, still contain traces of milk protein. The protein is just very broken down. Beckett's system is so sensitive that it recongnized and reacted to those broken down pieces, so his formula is based on amino acids instead. There are no actual proteins. And we just thought that Brant had bad allergies...Ha! His rash started to fade and this was a good sign. On Saturday, after still no substantial weight gain, an NG tube was placed. We were instructed to feed him from the bottle for 15 minutes. After 15 minutes, babies begin to burn more calories then they are taking in. Then, whatever was left in his bottle, we poured into a syringe that was attached to his tube, and gravity fed it to him via tube. This is called a bolus feeding. We were not on a pump at that time. I honestly prefer bolus feeding to continuous pump feeding. I think seeing the feeding tube came as quite a shock to me. For some reason, I just never thought of this as something my baby would need--even during our stay at the hospital. I never thought of him as a candidate for a feeding tube. Well, the sweet boy started gaining and reached his birthweight! Yay! We were thankful for his progress...I just wished he didn't need the tube to make the progress.

After 8 days at TCH after exposing our newborn to more testing then some people may have in a lifetime, we were released to go home (with the NG tube). We left with the diagnosis of a protein allergy, reflux (that's a shocker ...please note sarcasm) and failure to thrive (FTT). A few other allergic disorders were mentioned, but the elemental formula would treat it regardless. He weighed 9 lbs at 5 weeks. We were thankful to go home, and hopeful that his weight would take off from there.

I will post some pictures later. Thanks for checking in!