Results

The Upper GI test went well and did not show anything to be concerned about, such as a hernia, blockage, etc. Whew! What a relief. I've been a nervous wreck worrying that he'd need another repair surgery and am so glad they agreed to do the study to rule it out. What it did show is that Carter's organs are not in the ordinary places that most people's organs are found because of his CDH (this is normal for CDH kids). His stomach is facing a different direction so it does not fully empty unless he lying on his left side when he eats (as opposed to those with a normal anatomy who sit up to eat). This information helps us to know how to help ease his reflux. The radiologist also agreed with Carter's surgeon that a Nissen procedure is not an option due to his anatomy. The G-tube would be possible and we've been discussing the option of bringing him home with an NG-tube, but that depends on which Doctor we ask.

The big news of the day (and I'm knocking on wood as I type this) is that Carter took milk from a syringe today!!! 10ccs at 12noon -- 15 ccs at 3pm -- 17 ccs at 6pm! No success at 9pm because his feed was late and he was crying too much. This is more consistency than we've seen from him ever before. We're beginning to think that he's just not going to take a bottle and we may have to move to a transition sippy cup. PT, OT and Speech didn't work with him again today, so I'm thankful Brad has the skills to work with Carter.

The other big news is that Carter passed his hearing test. While this may seem mundane for most parents, for us it was a big concern. With ECMO and some of the medications he has required, there is a high risk for hearing loss. There is still a chance that he may have some hearing loss as he gets older, but for now we are relieved. When we tell him "no, no" when's he's 2 years old and he doesn't listen, we'll know he's just ignoring us and is being a normal 2-year-old.

TUMMY TIME!

Here's just some of the bottle nipples we've tried. There is at least one bag this size at the hospital, too. We have seriously tried every one Target has.

Just a note for Brad and I to reference--brainstorming things that might be going on:

• he still has thrush
• his palate has a ridge from the ET tube (hopefully temporary)
• reflux
• not enough consistency in feeds
• hypersensitivity

Gerber Baby

Nurse Lindzie thinks Carter is so cute that he should be the Gerber Baby. I told her that he'd be a terrible baby for Gerber since he refuses to eat! They'd go bankrupt if it was up to Carter to advertise food for them :)

Carter's had a rough few days. Yesterday he spent a large part of the day crying and screaming. He had not slept in over 24 hours, except for a few 10-15 minute naps. He seemed very uncomfortable, but we couldn't put our finger on what was wrong. He got numerous baths, which usually put him to sleep. Even one of our favorite Doctors tried to soothe him, which lasted all of 30 seconds before Carter screamed in his face. This morning, Nurse Susannah saw the light and gave him a dose of Ativan and he's been peacefully sleeping ever since. After talking to the Doctor today, we seem to think it's a combo of withdrawals (it's only been a week since his methadone was stopped), reflux and an upset tummy (I will keep the details to myself). I wish he could talk so he could tell us what's wrong. He's scheduled for a GI test in the morning so send lots of prayers that they don't find anything major.

We want to thank everyone for your suggestions and effort to get Carter feeding. Please keep the ideas coming b/c there's an answer to his puzzle out there somewhere. We had discussed pacifier feeds with his therapists a few weeks ago, but decided it was not a good idea because the pacifier is the only positive thing Carter has to associate with oral skills. Everything else that's been done to him is negative. The one way he can soothe himself is with his paci. So, we don't want to ruin that by adding a negative stimulus (food) to the pacifier.

We've tried dipping his paci in milk--he hates it. We've tried squirting a drop of milk into the corner of his mouth while he sucks on the paci--he hates it. We've tried milk, pedialyte, water--he hates it. We've tried bottle nipples shaped like a pacifier--he knows the difference. It seems like he doesn't like liquid in his mouth for some reason (aspiration, breathing difficulty, problems coordinating, pain when swallowing, a taste association between the milk and vomiting...who knows?). At this point, we're counting the months until he can have solids and then we may just send the bottles on a Life Flight helicoptor ride to the coast to dump them into the ocean.

I will post cute pics and an update tomorrow.

Escape

Carter escaped the NICU today with Brad and Nurse Gina. He had to go to the Children's Hospital for a GI study and was wheeled in his crib past the huge fishtank and windows along the way. It may sound insignificant, but for a baby who's never even been outside, just getting out of the NICU was a big deal. Brad said he was wide-eyed, taking in the new sights and enjoyed the trip there and back. For the GI study, he was strapped onto a board, given 20cc via the NG tube and they observed how long it took for his stomach to empty the liquids. He did very well and there don't seem to be any concerns with his stomach emptying. I'm sad I missed his big adventure today but I have to work if his nurses want to be paid! :)

Lindzie caught some pics of him last night after he scooted around in his crib and hung his legs out between the bars. When I get them scanned, I'll post them for your amusement. He also pulled out his NG tube during his 3am feed--I guess he was full or he thought one of his animals was hungry.

His blood pressure meds have been changed again, and his BP seems to be better today. The theory today on his feeding problem seems to be that it's due to reflux. This is both good and bad. Good, because reflux can be controlled and once it is, his feeding skills should quickly improve (if it hurt and you vomited each time you ate, you wouldn't want to eat either). Bad, because if the meds for reflux don't work, surgery is a possibility. I just can't stand the thought of a fifth surgery right now, but if that's what he needs, then we're all for it. This would also be good news b/c it would mean his feeding problem is more physiological than behavioral.

Good Times

Since Carter's been off the paralytic, we've been able to spend a lot of awake time with him. Yesterday, we got a couple of smiles (gas, again!) and even a few yawns. He also sucked on a paci for the first time! There's not much room in his tiny mouth for the breathing tube AND a paci, so Brad had to hold it in there for him, but he seemed to like it. We also found out that he LOVES to have his back rubbed, just like his Mommy. You'll see in the picture below that he looks drugged while Daddy rubs his back.

He had an echocardiogram (ultrasound of his heart) that showed the pressures are not increased on the right side. This is great news because increased right side heart pressure indicate pulmonary hypertension. So, they are removing the Nitric. They are not planning to put him on sildenafil (Viagra) at the moment, but if the pulmonary hypertension recurs/worsens, then Viagra it is. Keep the baby Viagra jokes to a minimum because I've heard them all from Brad already! :) He's also still being weaned from the morphine and versed, but don't tell Carter because he still hasn't noticed. His incision is healing nicely and each day his abdomen feels slightly less tight.

Carter just keeps continuing to amaze us and we continue to feel so blessed with his progress.