[wendy_bird23]

I got an email today about a little girl in need of placement next week. She is 1 year old, has Down Syndrome, a feeding tube, and is medically fragile.

I called the placement coordinator for more info but she hasn't gotten back to me yet.

Any one have any experience working with a child like this? Would you accept such a child when you already have another baby placed with you? My FD Teeny is 6 months, healthy though not a great sleeper, has bio visits 3x a week (I don't transport, she's picked up), and will likely be RU in 2 months (but you never know). Am I crazy to consider taking this new little one on too? If she was a healthy 1 yo I wouldn't hesitate as I know I can handle 2 babies. The DS doesn't scare me too much either it's more the feeding tube and medically fragile (which seems rather unclear and could mean a number of different things) that I'm worried about. I definitely need to talk to her CW and get details but thought I'd ask you all for advice too.

Any BTDT advice would be helpful.

[birdiebabee]

Feeding tubes are very easy. "I" came to us with a Mic-key button G-tube and I was VERY nervous at first but it really was easy to learn and care for and you get used to it. Medically fragile can mean anything. Some kiddos with DS have one or more heart conditions. Perhaps she had a heart issue at birth and it was repaired but she's still considered medically fragile. Perhaps she has a hole in heart and just requires cardiology follow up. It can be anything but if I were you I would go for it! Then again look at my siggy I must already be nuts! I would REALLY love to adopt a baby with down syndrome myself as I feel so called to doing it.

[LLLmom]

Feeding tubes are so easy! Its just like pumping gas. Once you learn how to do it it you are all set. At four year old, my daughter could do all things needed with my sons feeding tube. Seriously.

Two little girls in my Special Needs Play group have DS. Both of them have issues with swallowing (One aspirates, one possibly does) Heart problems are common. Reflux is common. Their ear canals are small so they typically have ear tubes. Hypotonia, low tone is common as well so developmental delays are common. The 1 year old in our group is just starting to scooch on her belly and just started sitting.

I would absolutely be thrilled to get a placement of a little girl with DS. I did respite a few weeks ago with a boy with DS and he was great!

[mountaineermom]

Well I have no expierence with feeding tubes, but my ffd had downs syndrome and other than developmental delays, there were no problems, she was the best baby I have ever taken care of. So happy all the time, just the most loving kiddo ever! Babies with DS usually have heart problems. FFD had two holes in her heart and she had surgery once she was through withdrawals. Does this baby have a murmur or anything? As far as feeding goes, my FFD didnt have any bottle feeding issues, but when it came time to start solids, OMG!, it was aweful! she had major swallowing issues and it would blow rasberries the entire time you were trying to feed her. It was very messy and took a very long time to actaully get a substantial amount of baby food to go down. But since this child has a feeding tube, eating may actaully be a little easier!
ETA: Even though this child is one year old, I would be prepared for more like a 6 month old size, development, etc. My FFD was super tiny

[lara247]

Pudge and Biggs is a great ( and so so funny) special needs blog written by a ( adoptive) mom of two kiddos with DS. A lot of developmental activities, but also a lot of stories about life with two adorable kids.

[Teacher8]

I was scared of the feeding tube when I heard DQ had one...but it has turned out to be very easy. DQ is also labelled medically fragile because of her injury, and at first, this also scared me, but as time has gone on, I have learned (and realized) she is categorized that way B/C of her injury, but also because she has to have meds every day and has more than the usual amount of appts. Honestly, she is the easiest kid we've had. She has a good nature, and other than she is really clingy and likes to be snuggled 24/7, she doesn't have any behavior issues. I'll take her over Giggler, who had extreme tantrums, fought everything, and had major anger any day. And Giggler was NORMAL!!!! Whatever normal is...

[wendy_bird23]

Thanks for the encouragement and helpful responses everyone. I still haven't heard back from the placement coordinator so I'm guessing they found another home for her. I didn't expect them to find a home for her so quickly with her special needs but hopefully a good match has been made.

I do feel more confident now about saying yes if a similar situation arises in the future. Always good to clarify with yourself what you are and aren't prepared to handle.

[dalynn1997]

While I would have said yes to the placement. I have a neice with DS and take special needs medical fragile children. BUT I would NEVER tell someone that a tube fed baby was easy.

I currently have a tube fed 10 month old who I have had for 3 1/2 months. We have had over 30 doctors appts, one surgery with another in about 3 months and 1 3 day hospital stay. She has a cleft palate, FTT, FAS and drug exposure issues NOT DS.

The MECHANICs of tube feeding is quite simple BUT the feeding issues that caused the child to need the feeding tube can be quite difficult.

I have done up to 7 Bolus feeds that take 1 hour each per day. She is a puker with motility issues. We have been on 3 different formulas. We have been through all the reflux meds which help very little. She can not tolerate the motility meds to help her process food. Instead we have to use probiotics and laxatives which cause 3 - 6 blow out diapers per day to keep puking to the minimum. And the puking was the scary kind where she choked and then would swallow and aspirate. we get up at 6:30 to begin feeds are up til 11 pm for last feeds and usually up once in middle of the night. It has been a living nightmare where I go to bed thinking about feeding issues, wake up at night with it on my mind and spend most of my day either feeding or cleaning up puke and / or poop along with talking to doctors weekly. The actual feeding through a Gtube is easy but everything that goes along with it can be quite challenging.

After 3 months of working with doctors she is now on a feeding pump and a lot of her feeding is being done slowly through the night. She may still need a Neissen surgery and may be switching to the GJ tube. It is getting better thankfully.

Thats my BTDT ... oh and I have a 16 month with special needs too.

[Nevada Jen]

I would agree that a feeding tube is easy. Honestly, I think considerably easier than feeding a new eater. Daylnn, that sucks that they did not move faster to resolve FD's issues. They should have admitted her and fixed problems that severe within a month! Pisses me off that some doctor or SW didn't respond appropriately!

[LLLmom]

I'm sorry your baby had such a hard time with tolerating feeds. Bolus feeds are challenging! It seems like most tubies I know are continuous and that seems to solve a lot of the motility issues. Or they have both the fundo and continual feeds. I'm sorry you went through such a long ordeal.

[dalynn1997]

NJ & LLL - Thanks! Before this baby I would have agreed tube fed babies were easy.

And we thought the doctors drug their feets too in resolving her issues. When I picked her up she just had gotten her Gtube and had been inpatient for a week. She also was inpatient for 3 days at the end of last month.

Other tubie babies I have fed in past were well established on Tube already. She was the first that I went through entire process with.

Just when I read that tube fed babies were so easy a four year old could do it. Struck me a little wrong. This has been the hardest thing that my husband and I have ever dealt with. So while tube feeding can be easy it isn't always.

[shall0927]

someone just posted a few days about having to say no to a newborn sounds like the same baby... hmmmm small world????

[NotDoneYet]

Originally Posted by shall0927

someone just posted a few days about having to say no to a newborn sounds like the same baby... hmmmm small world????

Lol I noticed that too, but this baby is 1 and I believe the other was a newborn or infant. Gotta admit I'm a little jealous, would love a little baby with ds, they are normally the sweetest kids! Esp.a baby girl bc my poor dd is outnumbered!