[Mama2EandK]

Hi, I posted this under Preemie Adoption as well, but thought I would post it here too- I hope that's OK! Anyway, I just wanted to introduce myself, hoping there are some other Moms like me out there to talk to! I am Mama to two wonderful girls- my older DD (E)is almost 4, she is my biological DD through ART. My younger DD (K) we are in the process of adopting through foster care. K was a 28 week preemie, weighed 2.5 lbs, and tested positive to maternal drugs at birth. We brought her home from the NICU at 3 months. She is now 16 months and has been diagnosed with mild Cerebal Palsy, GERD, and most recently (to my great dismay) Failure to Thrive. (She is a teeny tiny little peanut, just 16 lbs at 16 mo despite my efforts!!!) We do PT biweekly, no longer do OT, and will be starting Speech Therapy soon. Despite all her obstacles K is an amazingly happy little girl and a complete joy to us, and we are anxious for her adoption to be completed!
She was our first foster placement and it has certainly been a great learning curve so far, getting through all this- whew, what a ride! (And I thought infertility treatments were hard!HA!) Anyway- I'd love to chat with any other preemie or special needs adoptive moms out there!

[Lylac]

Hi Mama2,

Welcome to the boards

[lazshay]

We have an 11 month old fd that has many of the same issues you described. She was 2 months premature. She has CP, seizures, hearing loss, FTT, and GERD. She had a feeding tube placed a month ago and surgery for the reflux. She's now 16 lbs thanks to the feeding tube!

[cherrymom]

We have a 3yr old that is now 25 lbs thanks largely to a nutritional supplement formula she is on. We have gone back and forth on the feeding tube. It has been threatened several times. She has severe reflux as well. It is finally managed (mostly - she still has a lot of pain) and we await a scope to see if there is anything they can do since she's not outgrowing it. She is a sweet little peanut. We adopted her at 8 mnths old. Good luck Mama2 and welcome.

[LoveBeingaMom]

I am so thankful you posted, Mama2EandK, and everyone else. I thought we were alone and searchs on the internet haven't helped us.

Our ds (a through FC) was preemie at 28 wks and 2 lbs 3 oz at birth and drug exposed. He is now 14 months and 16.5 lbs and 26 ins! Such a munckin, he's the same size as our bio 6 month old. Basically he's stopped growing for the last four months. We have been struggling with "why is he not growing?" He is completely proportional, not skinny at all (even cherubically chubby). BUT we changed peds and got his medical records to take to the new Dr and found to our dismay he was diagnosed Failure to thrive (he never even told us!). Had reflux bad, and breathing issues (stopped breathing at 8 weeks and I had to perform CPR and call 911), hospitalized twice for lung issues (10 days each time), and has been on breathing treatments ever since the first episode. But now eats table food like it is going out of style and energy all over the place. Only problems developmentally seem to be speech.

We go to an endo in a couple of weeks but any suggestions would be appreciated. We are at a loss, he looks nurished and the Gastro took one look at him and said he was proprotionate so no nutritional supp necessary.

[athikers]

My little Teeter was a preemie, got RSV and nearly died. He has had nissen fundoplication and it seems quite successful. He is fed supplementally through a G-tube, he's on oxygen, he's got hypertenstion, he's got a seizure disorder, he's being tested for hearing/sight issues (which we believe will come back fine) and he has brochopulmonary dysplasia.

Oh, how four weeks ago I did not know what any of those things were, and now, here I am

But, any questions you have about any of it, I will be as helpful as I'm able!

[JessicaBaker]

Our six month old fson E has only been home 3 weeks and is losing weight ( despite my very best efforts. He was born at 33 weeks with a host of medical issues, including GERD for which he takes meds. He has a g-tube, but I've been trying hard to get him to take oral feedings. Once we went a whole day without the pump!

It's just hard cuz I had unrealistic expectations. We brought our now dd home (she was born at 27 weeks) and she gained a pound the first week with us. I thought love could make all the difference. Apparently it's only a start...

Anyway, I started crying in the dr.'s office today when I learned he had lost weight again (he's now down to 13 lbs from 13 lb 3oz). Now here we are with a new feeding plan and even more concentrated formula than before. Hope it helps!

Best wishes and prayers to all who have posted. It was helpful to hear your stories.

[athikers]

I understand everyone's frustration when you think you can just get them in your home and love on them and they will eat. Teeters aversions have not improved much, neither has his desire to bottle feed (until very recently). He is gaining VERY little weight, but is quite tall, so he is really, really, really skinny. And, in order for him to tolerate his feedings better (read: Not throw up every time) we had to significantly reduce the amount of formula he takes per feeding... which may or may not cause him to start LOSING weight instead of the very slow gain he's been having. If only, as their mommies, we could will them to eat better!

[NeedsCoffee]

It is so nice to read that there are other parents out there dealing with the same issues and have the same responses - crying in the doctor's office.

One of our little guys has mild CP, hearing loss in one ear, myoclonic seizures and microcephaly. He's 4.5 and hovers around 30 lbs. Eating is a huge struggle, but we are seeing more and more of it being related to behavior rather than oral motor, which is great in a way.

Our other little guy has major eating problems related to behaviors and we're getting some help from a therapist right now. The rest of his medical/educational team is just as lost as we are in dealing with this..... He's the same weight as his twin and is profoundly deaf, but has a CI.

You aren't kidding, Mama2EandK, what a ride this has been!!!