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Multiples
Being admitted to Hospital 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: Being admitted to Hospital for FTT!
I don't have any personal experience to share, I just wanted to wish you all the best in this. You should be so proud of yourself for not letting down and working hard to get to the bottom of the boys' issues. I can't imagine what a struggle it's been. I also can't believe (although I'm not totally shocked) that the staff at your dr's office didn't give your doc any of the messages that you called...obviously you were concerned and worried it's the least they could do to have you talk with the doctor directly.
I hope all goes well and I hope they start gaining weight soon. I'm so sorry you are dealing with this.
I am so sorry Laura!
I have no advice for you but I'm thinking of your family & praying for those gorgeous little guys. Hopefully their stay will be short and helpful!
HUGS!
I'm sorry, what is FTT? I missed your earlier posts.
I'm so sorry, Laura! {HUGS}
Baby #3 due September 12, 2014!
FTT= Failure To Thrive
I'm so sorry Laura, I don't have any exp w this but I wish you, your DH and your LO's the best of luck, a speedy recovery and answer to your questions. Lots of <<HUGS>>
?
Zeidy?
Oh No! I am so sorry. Hopefully they can find all the right answers for you during the boys stay. Keep us updated please.
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I am so sorry that it had to come to this, but I am SO glad that someone is finally listening to you!! I can't imagine how you must have felt when they said they would have to be admitted and I am so sorry you are going through this.
Hopefully, they will finally get the attention that you have been fighting so hard for them to get. They are so lucky to have you as their mom!!
I am sure you don't want advice at this point, but I just wanted to say that my guy had the exact same reaction to Elecare, I had more trouble with him on that than anything else, he would gag and fight the whole way. Our GI changed him to NEOCATE (he said it was the same thing *amino acid based* but different flavor) and that has been SO MUCH BETTER!! Just thought I would mention it in case you want to ask them about that if they continue to struggle on the Elecare. Again, so sorry you are at this point, but thank goodness they will be getting the help they need.
It sux that it had to come to this, having to go back to the hospital
Like PPs said though, overall it is a good turn of events - that your worries and concerns were 'not for nothing' and something is now being done and taken more seriously as it should. Kudos for your doctor for apologizing - but now s/he better get your boys out of this mess and also better set you and DH up with social support as you need.
You've been such an inspiration and exemplify everything that a mother should be, particularly with your own emotional ups and downs (even if you feel that there have been more downs than ups), you are still always there for your babies.
Hope the next few days are okay.
Oh Laura...you know this has been my feelings all along. I truly felt that your boys were FTT being the weights they were at, and everything I've been learning along the way with my Jax.
OK...so I of course have experience with FTT, hospitalization, amnio-based formula, and most importantly here...G TUBES.
You know I felt strongly that you should look into G tubes for the boys and have them admitted to get rehydrated and back on their feet. The g-tube surgery was 15 minutes (they did an EGD scope at the same time to check out EVERYTHING). They found nothing wrong and still believe the constant vomiting is extreme GERD. Jax was in the hospital for FTT for 10 days, only to be back 1.5 months later for the g-tube...which has saved Jaxon's life. He's gained over 5 lbs in the 8 wks of having it. He was in the hospital for 1 night, and did well with it. If you end up with the tubes, have the nurses show you how to "vent" the tube for if they boys are heaving you can "catch" the vomit and let gravity take it back to their bellies and gain that weight. Also Jax is on NEOCATE which is an amino based formula that is much easier for him to digest quickly. It's considered the "cadillac" of formulas. It's about $42 a can, so have it prescribed for insurance if you go that route! Something to ask the doc's about anyway.
I understand your feelings of being scared. I've been there...hell, I'm still there. But I will say I've always been concerned for you guys and have always wanted someone to give your boys a break and to at least visit the idea of a g-tube. I HATE THE FACT MY SON IS ON A SURGICALLY PLACED FEEDING TUBE (there I said it)...but I hated it more watching him vomit up his food and fail to thrive. I know you do too...
Please feel free to email me with any questions or if you just need support. Lots of love to you all.
annie_marie20 at hotmail dot com?
Oh my goodness. I am so happy that you FINALLY found somebody that would listen to you. I really hope that the doctors can get to the bottom of this quickly, so your little men can come home and start packing on the pounds.
Ben and Maggie - 4/10/09
Mia - 6/16/11
Surprise! due 2/23/17
Big Hug! Let us know how things go.
Lots of prayers headed your way,
April
You are such a good mother. Your pestering of the doctor paid off and your children are getting what they need now.
Please keep us updated whenever you can!
Oh Laura, I am so so sorry to hear this. I have no advice, but I wanted to let you know that I am thinking of you guys and so hopeful that this will help Evan and Cam gain some weight.
Jeni
Lots of luck and prayers! Thank goodness they are finally taking you seriously. Know we are all thinking about you and the boys. They will be home before you know it!
<<<hugs>>>