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Preemies
XP: Being Admitted for FTT!!!
I knew this would happen but when the doctor said we needed to be admitted for FTT I still cried. I did get an apology from her for wasting our time, the boys time more specifically, and she said she was never notified by her staff that I had called once a weeks since our first appointment.
Evan did manage to barely gain a pound in
three weeks on the higher 30 cal formula, but it's not at all what they
wanted to see. He's now 12lbs 4oz. And Cameron has gained .1oz in
the three weeks, so that's even worse. Cam still weighs 13lbs 14oz. They are 10months old and 7.5 months adjusted.
They tried to get us admitted this afternoon/night ot U of MD hospital which is about 45 min away, but they don't have any beds available at the moment. Since the guys are barely maintaining their weights we're not an emergency case but the situation is urgent, as I had been trying to tell them over and over.
We started giving them Ellecare formula with the vanilla flavoring tonight but they hated it and immediately started gagging, so we're mixing it with their old formula for now. If we can get them to continue to eat it at least insurance will cover the cost because this stuff is really expensive. We are changing their Prevacid from one 15mlg solutab at night and a half solutab during the day to one 15mlg solutab during the day and 1.5mls of Zantac at night. This is really high dosages but the GI docs aren't sure why the boys have stopped eating. We actually had to drop two feeds (the 1am feed and the 5am feed) because they just fought us the whole time, and the 9 am feed is not much better.
We'll hopefully get admitted tomorrow for a modified barium test and OT and Speech Therapy evaluations. After all the blood work and the Upper GI exam they will determine if we need surgery for a G tube or something else. Either way they feel there is some kind of allergy going on. I'm fairly certain by the way they were talking the Dr's think we need to have the G tube for both boys, and while I'm prepared for this, I'm still freaked out and depressed all the more. And poor DH was really hit hard by the news that we need to be admitted, I guess because he thinks I"m a catastrophist and that my anxiety has been amped up since they were born. Now he understands the severity of the situation and he's acting a little different, pensive and subdued and reserved. I think he's really scared now and just doesn't know how to deal.
So
if your LO's have been admitted for FTT, had a modified barium test
done, is on Ellecare and hates it, and has had a G tube surgery please
tell me what I need to know. What questions do I need to ask? What
things can I do to care for my boys while we're in the hosptial for 3
or 4+ days?
I don't know if this hospital will have WiFi for me to use my laptop so after tomorrow morning I may not be online much for about 3 or 4 days.
Thanks,
Laura
This discussion has been closed.
Re: XP: Being Admitted for FTT!!!
Laura, I am so so sorry!
I will certainly be praying for you. While Jack wasn't quite that bad (17 lbs at 12 months) and is going to be 21 lbs at 2 years, we had to have him on an am and pm solutab of prevacid. For us it made a HUGE difference.
I hope you get some answers. ((HUG))
laura-
i'm so sorry that you're going through this. i really wish that there was something i could do to help. please know that you all are in my thoughts and prayers.
-april?
Laura - I'm very sorry! That sucks. I was really hoping that the boys would at least start gaining a bit more weight.
Here are my thoughts. I apologize if they sound abrubt - Olivia is demanding some attention so I have to type fast.
The swallow study should hopefully show them what happens when the boys start eating. Keep in mind that it is one moment in time so you never know what will happen. Olivia has had several and they don't always show reflux.
I would personally ask about any and all medicine options. I say this as a mom whose daughter has a fundo and a gtube and still deals with reflux on a daily basis. Many parents say that the gtube makes reflux worse. You may end up having to go that route but I would SERIOUSLY push to at least try some drugs for a couple of weeks first. Ask about Reglan, Erythromacin, antihistamines (some parents have had success reducing vomit with them). For Olivia the only thing that has managed to help control her reflux is reglan and then erythromacin because it helps her empty her stomach faster. Volume is her big issue. There are other meds out there that do that but I don't know the names.
Make sure you ask about the long term plan they have for them. Weight gain is certainly a huge issue however if they boys are ever going to be able to eat properly - they need to get the reflux under control. And like I said - reflux is still a big problem even with a gtube.
Whatever happens I know you guys will be able to handle it!
I am so sorry. ((hugs))
Laura,
I am thinking and praying for you and your boys. Stay strong but know that we are here for you if you need to vent.
((hugs))
Sara
IVF 1=BFP, beta #1 8dp5dt 24, beta #2 12dp5dt 50, beta #3 14dp5dt 88.9
Weishaars' World
Laura- This post just breaks my heart as I know you have been fighting for them for so long now. ?Although the circumstances right now are drastic, let's hope the boys will now get the special attention they need and ?hopefully a solution will be found. ?I'll be praying for you, Cameron, and Evan.
Love, Corey?
oh babe.. well.. as much as I hate that they need it, I'm glad you're being taken seriously.
Robbie had a G tube before he left the NICU. He had a ton of other things done at the same time. If they DO give them.. make sure you get a pump.
I wouldn't agree to a fundo. I've regretted it since it was done.It does NOT solve reflux even though they bill it that way.
The rest I'm not sure on.. I sure hope they can come up with SOMETHING for you guys.
My Blog
Oh Laura, I am so sorry
I know how stressed you have been about this and I was really hoping that you would get some different news. I will keep you all in my prayers 
Need help with high fat food ideas? Chunky Monkey
Need help with high fat food ideas? Chunky Monkey
I would seriously push the issue. Time lost is time you can never get back.
I forgot to add that before he was admitted in December he was on prevacid 2x a day and pepcid 3x a day. Now he's on pepcid 3x a day, prevacid 2x a day and reglan before each bottle. In August we tried just prevacid and his reflux was so bad that the max dose for his weight was not doing anything and he stopped eating and was screaming constantly in pain and we ended up in the ER where we were told to add the pepcid back into his daily routine.