Sick Baby - Part 4

**Originally posted November 12th, 2005.**

Whew. What a long week.

Thank you all for your well wishes and prayers. They worked.

So far the diagnosis is severe GERD (gastro-esophogeal reflux disease). I'll take that. I can deal with the Prilosec twice a day until further notice. It could be up to two years or more.

On Wednesday, they scoped him under general anesthetic. That was absolutely the worst. All looked good anatomically, and there was healing irritation. They did a bunch of biopsies to test for allergies. I'll find out the results of that on Monday.

Honestly, at this point, I think that he is just extremely sensitive and needed the three days without food to rest his digestive tract and heal. There is nothing worse than watching your child waste away because he won't eat because he's in so much pain, but I think we have turned the corner with getting the acid under control.

He's doing very well and is actually acting like a baby now. This morning he woke up and entertained himself with his fingers for about a half an hour without screaming. I can change his diaper without him screaming. He sleeps and wakes up without screaming. He'll eat and not scream. He'll quiet down with me just picking him up. He's never done that before. It's such a blessing to have a baby at last.

He gets 1.5 ml of Prilosec twice a day to stop the acid. He has to sleep on his side or his tummy propped at a 30 degree angle. He must remain upright for 60 minutes after a feed. I can't put any pressure on his tummy and he can't be in his carseat for longer than necessary or his bouncy seat at all because it will cruch his little tummy up. I have to record how much food he got when, all his diapers and any choking episodes. We have to brush up on our infant CPR as this now becomes part of the equasion.

For now he is getting my milk with Good Start formula mixed in to bump the calories. This bumps the calories from 20 per ounce to 24 per ounce so I can get the weight back on him. At least he's back to 6-1/2 pounds, but that's just too tiny for a 7 week old child. He needs to fatten up! If he starts vomiting again, I'm supposed to thicken the milk with rice cereal, but I hope it doesn't go that direction.

This has been very difficult, but the support here is awesome. Thank you.

Here's to healthy, growing babies!

Sick Baby - Part 3

**Originally posted on November 8th, 2005.**

I found out that the doc who was saying that "it's only reflux and they will send you home" was the night on-call doc and she had no idea what we had been through and all of the details of his case. She can take a flying leap off a cliff for all I care.

I spoke with Payton's primary care physician today and he said there is no way they will send him home until they figure out what is going on. He's lost a half a pound since Saturday and that is a huge deal for a baby his size. He goes nowhere until he gains some of it back and keeps gaining and can feed on a regular basis without screaming.

He had his GI consult today and they spent about an hour and a half asking questions and poking about. He's getting another ultrasound tomorrrow looking for something neurological in his spine and also a scope test to look for anatomical abnormalities in his GI tract. If the esophagus is damaged, they will give him an NG tube to feed him so he can heal.

They are looking for things like pancreatitis, something metabolic, enzymatic or anatomical. They are covering all the bases they can. I have been asking lots of questions and I feel much better about the course of action that has been taking place. It just takes time. All of his doctors are very concerned about him and are doing everything in their power to fix him.

He's been eating a bit - they are trying him on a hypo-allergenic formula to see if he may be reacting to something in my breast milk. I got 15, then 20 then 8 ml's down him over the course of about three hours. He still fussed, so I'm not sure that it's that, but we'll see. This is the most he has eaten since Saturday.

I did find out that the surgery for the reflux is "last resort" because it is considered a major surgery. He would have to have a drainage tube sticking out of his chest for a week and they would have to slice away part of his stomach to wrap it around the base of the esophagus to tighten the valve. Yikes.

I do feel better today, but it has been extremely difficult. The doctors are hoping to have a concrete diagnosis by Thursday. These things just take more time with a little baby.

I'll update again when I find out what is going on.

Sick baby - Part 2

**Originally written on November 8th, 2005.**

They ran the Upper GI yesterday and did an ultrasound. They found they his Pyloric valve is at the very upper range of normal and will probably re-check it in a week to see if it has thickened more. If it has, they will probably do surgery.

He also has extremely bad reflux. Like scary bad reflux. Not within normal limits. It was amazing how much came back up. His poor litle esophagus is eroded and it hurts! This can be corrected by surgery as well, but this is a more major surgery and the probably won't do it because it's considered a surgery of last resort. Good Lord, how last resort do we have to be, how much weight does he have to loose, how much screaming does he have to do, how little does he have to eat to consider it last resort?

He hasn't had a full feed since 11:00 on Saturday and won't eat now - it's Tuesday. They had me try to breast feed. We got about two to three minutes worth of milk down him and then he screamed for 4 hours straight from the pain. His voice sounds so raspy from screaming so much. It's so sad.

He is now NPO (nothing by mouth) until further notice. The only time he is peaceful and quiet is when his system is completely empty.

The on-call doctor finally sent me home to sleep last night as I'm on the verge of a complete break-down. I've been pretty much asleep for the past 12 hours. I'm going to try to get a bit more sleep now and go in later.

This is so difficult. I caught wind of them wanting to send him home because "it's just reflux". How am I going to care for a constantly screaming child who won't eat? He won't get the fluids or nutrition he needs because I won't have an IV at home! He's going to loose the weight we worked so hard to put on him. He's already lost quite a bit and is back down to around 6 pounds. That's too small for a 7 week old child. This is nuts.

I have no idea what to do and I swear I'm going to loose it. I'm trying so hard to be strong, but even I have my limits. I've darn near reached it. I want him fixed and I want him home.

I just called and talked to his nurse, and they are doing a GI consult today. We'll see what happens.

I'll update tomorrow.

Thanks for all of your support. I truly appreciate it.