Friday, January 23, 2009

Little Vampires with Mommy-itis are Admitted to the Hosptial

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.


Sara said...

I am so so sorry you are having to go through this. Hopefully they will find the right treatment for these little guys. AND it totally sounds like they are kissing you. Mine do the same thing. :-)

Jennifer said...

Being in the hospital with your babies is the worst. We are definately thinking of you and can't wait for an update. Make sure to eat something!

Dianna said...

Sending lots and lots of hugs your way and to those precious babies!!

kozer1 said...

I have 28 weeks twins, one with a g-tube. I believe I quickly told my story on another comment for another entry, but, I wanted to give you a website (forum) that is AWESOME for parents of kids with feeding issues/g-tube/tube issues/etc. It is GREAT - please check it out, you will be happy you did! It helped me SO much when I was going through what you are going through, talking to other parents and learning - the website is:

You will see it is a huge forum and if you scroll down you will see the various sections including the tube feeding issues and feeding issues and aversions. Hope you enjoy :)

Kim said...

Here via Babyonbored.

Our 6 1/2 month old has also been through too much of this nonsense, as well.

I have SO MUCH that I want to say. I can't possibly fit it all here, though!

Please e-mail me at Trying4two at gmail dot com when you get a chance and I will give you an invite to our blog, along with some of the stuff I've learned along the way and a ton of hugs!

Heather said...

Stefanie sent me your way. I have a 28 weeker myself. She is 14 1/2 months old now (1 year adjusted) and weighs only 15 pounds. I think she might be the only baby with FTT that DOESN'T have a g-tube. I need to go back through your archives and see what's the what - especially since Stef thinks you're being steered in the wrong direction.


Cheryl Lage said...

Just popped over from Stef's blog, and wanted to say we are all rooting for you. Our twins were refluxy (and on Zantac), we had a bad case of the screaming back-archers for months, and our she-child rode the 3% weight curve until she was 5. THEY ARE BOTH FINE NOW.

Hnag in...ask questions...even ones that seem "silly." (They aren't!) Take heart in the fact that your two sound VERY animated, active and fun. :)

You've got many supporting you in spirit. :) Peace.

Kyla said...

I'm in a bit of a different situation, as my kiddo with feeding issues is nearly 4, but we had a g-button placed for her in November and it was a life saver. Easily the best medical decision we've ever made on her behalf.

Our situations are completely different, so I feel largely unqualified to advise you, but I just want you to know, sometimes things that seem scary (like g-tubes) can be really wonderful. If you have any practical questions or want to bounce feelings off of someone (it is a really emotional decision), I'd be glad to talk with you. My email is and much of our experience with my daughter's g-button is documented on my blog, too.

Lil Mouse said...

stefanie from baby on bored said you needed some encouragement. me and my monster baby are wishing you the best of luck with your tiny mice! just breathe and smile, and smile and breathe. let life take care of itself, i am saying a prayer for you.

Michelleybelle said...

I found you through Stef's blog. I am the mother of a 25 weeker who is now almost 10 months old, 6 months adjusted. He just had his g-tube button removed on Tuesday (he has had it since the end of August). He had it for very different reasons than the ones your boys might get them for. He hadn't mastered the suck, swallow, breathe skill and was aspirating during bottle feeds. Lucky for him (and us), he didn't have any reflux or stomach emptying problems. He did have a modified barium swallow test before the g-tube placement. Because he had no reflux or delay of emptying, we were able to avoid needing a nissen with the g-tube. That is definitely something to ask about. It is usually recommended if the baby has reflux, but one of the risks associated with it is that vomiting can undo the procedure (which may then require re-doing the nissen).
I know our babies' situations are different, but if you have any other questions about what life with a g-tube is like, please check me out through my website. I'll try to answer anything I can. My son THRIVED with the g-tube, and while it was scary at first, I am so glad that we did it.

Sheila said...

My youngest was IUGR and was born at 1155 grams ... we never did the gtube and struggled with weight gain and played with reflux. We ordered our own hi cal formula and I nursed (once she started finally at 9 weeks) and supplemented.
We didn't have many medical options -- and were coached through folks in Hawaii. She now rides her own curve and is 22.5lb at almost three. I will keep you all in my thoughts. Hospitals with kids are my least favorite place -- my first spent a lot of time in for other reasons. Love to them from the pacific rim.

Other Mother said...

Stefani also referred me here. I have a foster son (soon to be SON) who came to us at 14 months, and 10.5 pounds. He's now 6. We've been through a lot of stuff with him, but the secret turned out to be finding the right formula which then stopped the reflux, stopped the stomach and other pain, and since then the aversions have gradually lessened. It took way too long for us to get to that point. I'd be glad to communicate with you directly if you'd like. You can reach me via my blog. Best wishes!!

MommaNecey said...

Hi. Got your blog from Baby on Bored. I had 30 week twins (girls) 7 years ago. One is perfectly typical - 3 lbs 2 oz at birth. The other not so typical - 1 lb 1 oz at birth. At 8-9 months she was not even 5 lbs. At seven years old she weighs 36 lbs (her twin weighs 70-75 lbs). We had a TERRIBLE GI experience. Emma threw up 20 times a day, on average, for about 2 years. She also had constant diarrhea. Her GI put her on 2 different reflux meds (zantac and reglan, I'm pretty sure) and ALSO on an adult dose of miralax (before it was OTC). GI stated that she had chronic constipation. -she had constant diarrhea!!! (that still burns me up) At any rate, we took her to a different GI in New Orleans and he changed her life overnight. LITERALLY. She had a milk protein allergy. As soon as we took her off of ALL milk (even trace amounts), there was a RADICAL change. Now, I am not saying your sweeties have an allergy. But I would DEFINITELY get a second opinion. In fact, our N.O. doc was our third opinion. The second opinion simply looked at what GI#1 said and agreed. Simple as that. Our doc was a NIGHTMARE. BTW...she ended up taking 36 cal formula and as she got older we added rice cereal to her bottle (even though your not supposed to do that, her doc told us to). It seems that your kids have some aversions - she did too. But she eventually took it. (I've always said she has no taste buds.)
Feel free to email me. I do not know Stefanie - I saw her blog while hunting for something else, but I would LOVE to encourage you or let you know what we did (if I can remember...with kind of just SURVIVE! ;) )


MommaNecey said...

oh...also...she never got a g-tube. (I had bad experiences with them previously) We decided that as long as she was gaining, even if it was minute, we would just continue to feed her. I do not regret this decision. (this is not my's just an FYI)


Stefanie said...

Laura, I so hope this is helping you! All of these people have helped me in different ways. I'm thinking about you in the hospital, sending good vibes and know they will be fine. Failure to Thrive as you probably know is not a diagnosis. Just a result of not gaining.

MommaNecey said...

I don't know if this will be helpful to you at all, but my daughter has had 3 open heart surgeries (as well as other multiple night stays in the hospital) and we've been "frequent flyers" at 4 different hospitals - 2 in Alabama, 1 in CA, and 1 in Atlanta. Biggest recommendation I have for hospital entertainment is the wagon. I must have walked my daughter a million miles in the wagon during her frequent and prolonged stays. Also, most children's hospitals have rooms where you can check out toys and movies. TAKE ADVANTAGE OF IT!!! *IF* your hospital has a social worker, take advantage of that, too. He/she can help you find resources for any given situation. (we had one who actually helped us get my other daughter clothes as she had outgrown all of hers during our stay) I have many ideas, but I'm sure you are EXHAUSTED...I will leave it at that. Feel free to email anytime.

Sandra said...

I'm over from BOB's site. I'm sorry your going thru all this stress with your adorable boys. I agree, it sounds like he's trying to kiss you. So sweet!