We took the boys to their 3 week follow up GI appointment today. It was their first outing in the snow. Things aren't going well for them weight wise. I knew this would happen but when the doctor said we needed to be admitted for Failure to Thrive 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.
So if your little one'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 hospital for 3 or 4+ days?
Despite the FTT diagnosis, the boys have been really animated this week. Not just with all of their PT developments but with their personalities too. This week Cameron started babbling. He says "Diediediedie", "Yieyieyie", and is saying these sounds with varying degrees of volume and vehemence all the time. Evan is mastering the art of blowing raspberries and cooing and singing in a very distinctive little boy voice. He watches Cameron when he is babbling and I'm certain any day now they will be shouting "Yieyieyie" in unison.
(Note: I had drafted this next part of my post before today's GO appointment I described above. It just goes to show that you really need to trust your mother's instinct and break out the ass kicking boots before it's too late!)
The reflux has not gotten better though we did make another change since increasing their formula to 30calories per ounce. After a few repeat phone calls begging the GI to see us sooner than next weeks appointment because the boys have been vomiting more than ever and because their eating avoidance is worse and it now takes two hours to convince them to eat, I finally got the head nurse to tell me to increase the Prevacid dosage from one half of a 15mlg pill twice a day to one half a 15mlg pill in the morning and a full 15mlg pill in the evening. I'm pissed about this because they could have made this change when I begged for help at our initial appointment and told them that they would vomit more and scream more because of the thicker formula. At the time they told us we'd just have to see what would happen, that a thicker formula shouldn't cause them to vomit more (Ha! Yeah, right!) and thus they would not have any more paid from the reflux just because it was thicker (again, yeah right!). I plan on letting them know that I will not tolerate getting my chain yanked around like this anymore.
I'm so fed up with GI's and doctors not paying attention to us. I still haven't gotten a call back from our pediatrician's office about the boys' allergic reactions to their Synagis RSV shot. I am reporting it to the CDC and the FDA whether or not they call me, but I am really pissed that they don't seem more concerned. And the icing on the cake is that I got a call from my OB/GYN's letting me know that my OB who delivered the boys has moved to Tennessee suddenly and that I would need to start seeing someone else in the practice. I don't mind seeing someone else, but I feel very caught off guard that I won't be seeing the doctor that did a procedure on me that has caused me to decide never to have more children. It just makes me feel like I'm thrown by the wayside yet again.
We've had to drop a feeding in the middle of the night and another one at 5am because they just refuse to eat at that hour anymore. This means they go about 9 to 12 hours without eating. And frankly I don't think I can keep up with a four hour feeding schedule when it takes two hours to feed one baby any longer either. Even at 7 months old most kids have been sleeping through the night for months. I know I'm doing it for their weight gain and that they are still the size of most 5month olds at twice the age, but they just refuse to eat the 1am and the 5am bottle now. They just sit there playing and cooing and talking until they're exhausted and fall back asleep. When you put the bottle to their face they scream, arch their backs, crane their necks at odd angle to escape. So why am I killing myself trying to force it into them? I'm hoping that if I can get them to sleep from 10pm to 5am they will start eating better in the mornings. So far it's just okay, and I'm getting up every 20 minutes to replug pacifiers but they still don't eat enough at 5am though more than they were before.
Two other new developments are that recently Cameron has started to grab my shirt or the skin on my neck and pull him self so that he is open mouthed and gumming my neck. I have no idea why he's doing this but I think maybe he's trying to kiss me. It looks more like he's trying to bite me. And today Evan started doing something almost the same but with much less force and control since he's got weaker muscle tone. But it's cute all the same. The second funny development is that if I leave Cameron's sight, or if he can hear me but not see me he starts to babble or cry in distress, and then stops just as I come back into his view. It seems that separation anxiety or what I like to call Mommy-itis has kicked in. Evan is not as impacted yet, but monkey see monkey do and I'm sure he'll be behaving the same way soon.
We can't stop laughing and smiling at each other every time we hear them start talking, and they are slowly just starting to grow out of their 3-6month sizes. It seems like this week the finally seem like real little boys and not just these lumps of babies we're trying to fatten up. They are starting to have distinct personalities.
Also, as a side non-baby-related note, I decided to have the minivan repaired from the rear ending fender bender we had on the day of our first GI appointment but in leaving for the appointment the van wouldn't start again (it has a brand new battery from the last time this happened in December) and then while on the way to the auto body repair shop I lost all electric while driving twice. Then when the estimator tried to turn the van on to get the mileage it wouldn't start agian. Ironically we were named as recipients of an award settlement from a class action law suit with CarMax for selling cars without telling people the car had been a rental prior to sale. We are going to use the settlement, about $1450 to buy a new van. The one we have now is just cooked, and it's the third car in a row we've had have the same or similar electrical problems. Which color should I pick for my new Mom-mobile? Red, green, or blizzard white?
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.
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