Saturday, March 19, 2011

In which I try to use you for your smarts.

Yesterday?  We got our first whiff of homespeak.  Ainsley is off of vapotherm.  See?

HAI!  I'm learning to breathe and eat, and I'm wide awake at 6 a.m.
Shouldn't you be doing something more productive than reading blogs?
Lazy whores.  All of you.
So here is where she is at with the whole going home checklist:

1. Off Vapotherm/Normal Breathing  : Donesky-ish!
2. Maintain Temperature in Open Air Crib : Donesky!
3. Eat From Bottle : Shitsky!
Eating is intimidating to me for several reasons, the biggest of them being her cleft palate.  She has a cleft soft palate, so there is essentially nothing between her mouth and her nasal cavity.  Add to that the whole Preemie Never Had A Bottle Yet thing just sounds like disaster to me.

And apparently, it sounds like a disaster to the doctor, too.  Because they were throwing out the idea of a g-tube.  Not yet, mind you.  It was more of a Just The Tip, Just To See What It Feels Like conversation.  Except, about a g-tube and not about penises and sex in case you weren't clear on that.  But, ya know...

Doctor: She can go home with an ng tube, but the g tube might be better, and she's an old lady now and we need to start thinking of ways to get her home.

Jennepper: ** shits pants yet tries to act cool**  Right...right...uh huh...right

So here's what I need (because I'm needy): I need to hear about your experiences with teaching an old hag NICU baby - she's been here 11.5 weeks - to eat from a bottle.  Bonus if your baby had a cleft palate...because you have to take a win where you can get one, right?  (Charlie Sheen?)  Or, even if it wasn't in the NICU, tell me about your experience with a cleft.

Don't blow smoke up my ass here.  I need to have a realistic idea of what we are in for.  I want tips and tricks and whatever.  I'm not against a g-tube, but I want to make sure that we are giving her a fair shot at bottle feeds before we get there.

Here's a picture of Olivia, who is a giant huge monstrous toddler who now says YOGURT instead of YOGIE and who will be attending Harvard in the fall to pursue her studies in everything Disney, with a minor in Tantrum Throwing.

BYE BYES!  BYE BYES!
BYE BYES GODDAMNITNOW!

--

One Year Ago:  Help Me Settle A Dispute
Two Years Ago:  I Think Someone Stole My Baby!
Three Years Ago:  Dear Tylenol

45 comments:

Faithful Infertile said...

Totally not trying to be that kid, but we were EXTREMELY lucky with our 26-weeker. She actually started nursing/taking a bottle when she was 34 weeks. But I know that she wasn't the typical preemie.

However, we met tons of other parents, and all of them said the same thing. Don't rush or force it. If she can take even a few mls by bottle, it is a start. Let her go at her own pace. A couple of my friends mentioned that trying to get their babies to "drink just a little bit more" usually resulted in spit ups, choking, crying, or all of the above. Just know she won't be on the tube forever. :) So glad you are getting closer to going home!!! :)

s said...

YAYYY, ainsley!!! sh really is cute as a button... our girls just came home from the nicu a week ago today, after 13 weeks in there. towards the end of their stay, it was the whole eating thing that was holding them back. it took what seems like f.o.r.e.v.e.r. for them to get the knack. even now, there are still episodes of choking, maybe turning a little blue, before they get their 2 ounces down. the nurses always tried different nipples, which confused them, thus making it tougher to get them to eat. we make sure to hold them up while eating, swirl the bottle in their mouths, and make sure that the nipple has a hole in it.
ainsley is a rockstar, and, in true diva fashion, she'll get the hang of it... when she's ready ;-) hang on, mama... the nicu is almost a memory!!!

areyoukiddingme said...

I wish I had some tips for you. But, go Ainsley! Maybe you could just use the old toddler bribery option - you know, unlimited access to princesses and cookies as soon as she has teeth? Good luck...

Krystle said...

I have to say I giggled when you said, just the tip, for obvious reasons.
As for feeding, I'm not sure, my 35 week preemie is sucking hardcore at it & was just put in the PICU because of it.
Will her soft palate need surgery to correct?
Might as well get the bottle over with so that if it doesn't work she can get the tube of choice and be on her way home.
I think they make special bottles for palate issues, also.
I know a blog I follow, her daughter had that & they had to bottle feed but i'm not sure which bottles.

Again, i'm not sure if soft cleft, is the same as regular cleft palate, so forgive me if i'm mistaken.

Here is her post on it though, it may be helpful.

http://www.allthingsgd.com/2010/11/our-perfect-girl.html

Liane said...

Hey I was going to recommend All Things G&D too!! :) I'm still pregnant, so no personal experience to share, but I read Dusty's blog, and their little girl Kate went through the cleft palate thing, complete with surgery when she was old enough, and she's fully recovered and all is well. There are lots of posts on her blog about it, and I remember some of them back in the day talked about bottle feeding. Hope that helps and Ainsley and Olivia are both beautiful. :)

Jen said...

Yay for Ainsley getting the home talk! It's exciting to hear!

I work for a Feeding Clinic, where the whole point of the team is to transition kiddos off their tube feeds to oral feeds. (I'm just the secretary, so I'm just going off the bazillion reports I transcribe)

Gtubes? My opinion? While scary - can really help kiddos get adequate nutrition while learning to feed. The ng tube is great, but prolong ng tube use can lead to big problems later on.

Some preemies with the soft cleft are able to use regular bottle, whiles other need a special bottle like the Haberman system. Has she been trialed on the Haberman? If not, ask the NICU if they can try it?

To prevent oral aversion, make sure to encourage using a pacifier and mouthing her fingers - especially during tube feeds. This will help her maintain the connection of using her mouth and having a full tummy.

I can email you all the handouts that we have, as well as sample plans they write for the NICU babies. I'd recommend going over it with someone from the NICU to see if there are any recommendations on them that they haven't tried yet.

Hang it there! Ainsley is going to rock at oral feeds soon!

MFA Mama said...

No experience with elderly preemies, but I have a kid who had first an NG tube (for months) and then a G-tube (which he still has) and...get the G-tube. BEG for the G-tube. Seriously, it's counterintuitive because OMG SURGERY ON TEH BAYBEE but it's SO much more comfortable for them, doesn't irritate their throat (which can be counterproductive as HELL with the eating orally thang), and best of all you can't put something down it and kill them instantly from aspiration pneumonia (scary and entirely possible, but my baybee never had it, so NGs can work at home temporarily with CONSTANT VIGILANCE) because it doesn't "oopsy" slip out of the right hole and into the...how did this become about SEX? Anyway. E-mail me anytime :)

Meredith said...

I had the same question as others. Is surgery needed/planned for the cleft? I would think that if so, it would affect what your feeding plans would be. My only cleft knowledge comes through my husband, who was born with the full cleft lip and palate, but I do know he had 3 surgeries before age 1 and had to re-learn feeding to an extent after each.

Flyover Belle said...

I'm not a parent of anyone with a cleft palate, but I am a former PICU nurse. A couple of thoughts...
1. Have you had a feeding team consult? If not, please ask for one. They should be able to give you a realistic picture of how this will proceed.
2. Does your hospital have buddies (for lack of a better word)? In other words, can they hook you up with another family that has gone through the same trying-to-feed-the-baby-with-a-cleft issue, but that is further along? I know you'll get helpful comments here, but getting more info from someone who has gone through the process at your hospital might be helpful, too.
3. G-tubes really aren't all bad. It helps avoid the oral aversion issues. You don't have to keep dropping an NGT when the kid pulls it out at 3 am for the 11 billionth time. And they are quite easy to remove once she's eating enough orally. But, obviously, that is YOUR decision as a family.

I think about you often, with everything you have gone through, and am amazed at your strength and good humor.

Flyover Belle said...

Also, OMG, the cute. Seriously. I can't believe I forgot to say that in my 1st comment. ;)

clearness said...

I have no idea but my instinct says to try to feed her by small spoon or using a dropper.

thirtiesgirl said...

No tips, sorry. Just wanted to say your children are beautiful and I'm so happy for you that the old lady will be coming home soon.

pagegunn said...

My daughter was born at 33 5/7 weeks with a cleft to her hard and soft palate. She was in the NICU for approx 3 weeks before we were able to bring her home. We tried several bottles but only one worked best. The Medela Special Needs feeder is the one she liked. http://www.medelabreastfeedingus.com/products/breastfeeding-devices/83/specialneeds-feeder
You will notice the longer section before the nipple. That is used by the feeder to push milk into the baby's mouth as baby tries to suck. Due to my daughter being LAZY she really didn't learn to suck til she was 2 years old. This bottle worked fantastic. We were able to get them through Children's Hopsital while she was in the NICU. The insurance covered the cost on that.

Another bottle they tried was called the pigeon feeder. It didn't work nearly as well.
http://www.cleftadvocate.org/feeders.html (3rd bottle on right side)

Once Quinnie was a little bigger I switched her to the NUBY sippy cups. I did cut open the holes and she learned to control the flow by pressing the soft plastic against her face.

As for the Cleft Palate surgery don't worry about it. I know the crazy thoughts running through your head. I did the same thing. Our Doctor wanted to do the surgery between 9-18 months. Quinnie's was at 14 because she was so small. WEAR GRUBBY CLOTHES. There is a little drainage mostly saliva with a little blood that will stain every thing. Quinnie would barely allow me to get up to go the bathroom. She barely accepted her Daddy which is her favorite. In all honesty I gave her one dose of Vicodin at night the first night we were home but she was on ibuprofen for about 1 week. By day 2 home she was playing with her big brother like nothing happened. The NO NO's suck but I took them off Quinnie when I could watch her. Every cleft Mom I've talked to said their kid didn't want anything in their mouth so wrecking the surgical site really wasn't an issue.

Another thing to keep the in back of your mind. Because of the cleft palate her orthodontics WILL BE covered under your MEDICAL INSURANCE. We haven't reached that stage yet but I've had several cleft parents I've talked to and they said YES remember that.
I hope I haven't overwhelmed you. You will do just fine. :)
~Steph

pagegunn said...

My daughter was born at 33 5/7 weeks with a cleft to her hard and soft palate. She was in the NICU for approx 3 weeks before we were able to bring her home. We tried several bottles but only one worked best. The Medela Special Needs feeder is the one she liked. http://www.medelabreastfeedingus.com/products/breastfeeding-devices/83/specialneeds-feeder
You will notice the longer section before the nipple. That is used by the feeder to push milk into the baby's mouth as baby tries to suck. Due to my daughter being LAZY she really didn't learn to suck til she was 2 years old. This bottle worked fantastic. We were able to get them through Children's Hopsital while she was in the NICU. The insurance covered the cost on that.

Another bottle they tried was called the pigeon feeder. It didn't work nearly as well.
http://www.cleftadvocate.org/feeders.html (3rd bottle on right side)

Once Quinnie was a little bigger I switched her to the NUBY sippy cups. I did cut open the holes and she learned to control the flow by pressing the soft plastic against her face.

As for the Cleft Palate surgery don't worry about it. I know the crazy thoughts running through your head. I did the same thing. Our Doctor wanted to do the surgery between 9-18 months. Quinnie's was at 14 because she was so small. WEAR GRUBBY CLOTHES. There is a little drainage mostly saliva with a little blood that will stain every thing. Quinnie would barely allow me to get up to go the bathroom. She barely accepted her Daddy which is her favorite. In all honesty I gave her one dose of Vicodin at night the first night we were home but she was on ibuprofen for about 1 week. By day 2 home she was playing with her big brother like nothing happened. The NO NO's suck but I took them off Quinnie when I could watch her. Every cleft Mom I've talked to said their kid didn't want anything in their mouth so wrecking the surgical site really wasn't an issue.

Another thing to keep the in back of your mind. Because of the cleft palate her orthodontics WILL BE covered under your MEDICAL INSURANCE. We haven't reached that stage yet but I've had several cleft parents I've talked to and they said YES remember that.
I hope I haven't overwhelmed you. You will do just fine. :)
~Steph

Rotten said...

My girlfriend just gave birth a month ago to her daughter who also has a soft cleft palate. They have been bottle feeding successfully since her birth. It is a special bottle that they must squeeze milk out of since she cannot suck, but it seems to be doing well and she is gaining weight and doing much better. I'm not sure if Ainsley's case is worse than my friend's and therefore she would need a feeding tube instead of being able to use a bottle, but I just wanted to throw in my two cents.

pagegunn said...

My daughter was born at 33 5/7 weeks with a cleft to her hard and soft palate. She was in the NICU for approx 3 weeks before we were able to bring her home. We tried several bottles but only one worked best. The Medela Special Needs feeder is the one she liked. http://www.medelabreastfeedingus.com/products/breastfeeding-devices/83/specialneeds-feeder
You will notice the longer section before the nipple. That is used by the feeder to push milk into the baby's mouth as baby tries to suck. Due to my daughter being LAZY she really didn't learn to suck til she was 2 years old. This bottle worked fantastic. We were able to get them through Children's Hopsital while she was in the NICU. The insurance covered the cost on that.

Another bottle they tried was called the pigeon feeder. It didn't work nearly as well.
http://www.cleftadvocate.org/feeders.html (3rd bottle on right side)

Once Quinnie was a little bigger I switched her to the NUBY sippy cups. I did cut open the holes and she learned to control the flow by pressing the soft plastic against her face.

As for the Cleft Palate surgery don't worry about it. I know the crazy thoughts running through your head. I did the same thing. Our Doctor wanted to do the surgery between 9-18 months. Quinnie's was at 14 because she was so small. WEAR GRUBBY CLOTHES. There is a little drainage mostly saliva with a little blood that will stain every thing. Quinnie would barely allow me to get up to go the bathroom. She barely accepted her Daddy which is her favorite. In all honesty I gave her one dose of Vicodin at night the first night we were home but she was on ibuprofen for about 1 week. By day 2 home she was playing with her big brother like nothing happened. The NO NO's suck but I took them off Quinnie when I could watch her. Every cleft Mom I've talked to said their kid didn't want anything in their mouth so wrecking the surgical site really wasn't an issue.

Another thing to keep the in back of your mind. Because of the cleft palate her orthodontics WILL BE covered under your MEDICAL INSURANCE. We haven't reached that stage yet but I've had several cleft parents I've talked to and they said YES remember that.
I hope I haven't overwhelmed you. You will do just fine. :)
~Steph

afeeleys said...

Your girls look so sweet!

I wish I had more useful tips, but I can only echo what was said above- see if you can get someone whose specialty is feeding help in the NICU (I think it's speech therapy) and don't despair if you need to get her a G-tube. It can really help.

Good luck!

Carina said...

I have no experience with preemies or feeding with cleft palates, but I do have some advice in regards to Olivia. Please, please, please scoot her chest clip on her car seat buckle up. It should be at arm pit level. Gotta keep all the baybees safe!

Grats in regards to the talk of Ainsley FINALLY coming home, hooray!

Chaim B said...

One of the first pieces of good NICU advice I received was to ask (INSIST) that the nurses place a binky in the baby's mouth with some milk/formula on it EVERY time she's fed so she can a) get used to the taste, b) associate the taste with her belly filling up and c) learn to suck.

I suspect c might be a tad more challenging for your bambino, but she's shown that she's a fighter! My youngest brother was born (full term) with cleft palate and I think my mom used special bottles. I'd ask for a consult from a cranio-facial team of specialists. They've been here before. Why re-invent the wheel?

All three of your girls are beautiful. I can tell you're a very strong,loving mama. They are blessed to have you!

katherine said...

I'm afraid I have no wisdom to share, but I did want to drop a note saying that I've been thinking about you all ad am super happy Ainsley is coming along so well! Hang in there, mama...

G+D said...

Hi Jen, I wish I had some good advice for you here. While Kate was born with a cleft soft palate, she wasn't premature so we didn't have that added issue. We used Haberman bottles (a.k.a. "Medela's Special Needs Feeder") and she did well with those. Apparently some babies with cleft palates are able to pseudo-suck from the nipple and get enough milk that way, but Kate never had a strong enough suck, so we had to actually squeeze the milk into her mouth each time she closed down on the nipple as if to suck, and all she had to do was swallow. That worked well for us.

I hope that helps, and feel free to email me if you have any follow up questions. I've been thinking of you and girls!

sarah said...

I don't have any experience with the NICU/preemie aspect of this, but my kid was born with virtually no suck reflex. He was fed through a tube for 10 days, until he figured out how to suck. The only advice I have is to have a speech therapist see Ainsley, because the one we worked with was a lifesaver, and got us out of the hospital more quickly than we anticipated.

Also, the nipple on the bottle is important, too. We used the fastest flow size we could find, which helped him a lot. Good luck-she is beautiful.

alison said...

I've got nothing helpful, except that you're awesome and your girls are b-e-a-utiful! Still hoping for arranged marriage(s) in 30 years, mmmk? :) xo

also: the word verification is horiumpo, which is basically awesome

babytears said...

Hi!
My twins have been in the NICU 12 weeks now- they were due right around the same time as yours so they're right at 43 weeks. While our little girl didn't have feeding issues, little boy Max has the whole set of issues including the fact that he aspirates milk into his lungs which is very bad apparently. Anyway, what our NICU is doing is thickening his milk. They add something called Simply Thick to his milk and it makes sure that it goes down the right place. I don't know enough about cleft palates to know how relevant that is but I am thinking of you guys and hope sweet Ainsley gets the hang out it quickly!

Greta said...

No tips here...just wanted to say your girls are precious!!

Shauna said...

My son had a complete unilateral cleft lip and palate. We never had to have a g-tube. But I did have a terrible time with his feedings. I bought EVERY bottle (including specialty $25/per nipple bottles) and nothing worked except for the dr browns bottle (with a number 3 or 4 faster flow nipple). The trick is he didn't have to suck so much (cuz he couldn't) but was able to get formula more by "munching" the nipple. (that sounds dirty now that I see it in print).
Anyway once I figured this out he did amazing. However he was not a preemie so I don't know how that will factor in. Email me if you want I'd be more than happy to share details of my experiences with you! (my son is 2 next week so we've been dealing with this for a while).
wagnershauna@gmail.com
Good luck! Shauna

meinsideout said...

De-lurking to let you know how incredible I think you are.

I have not been through what you have been through - and I was getting overwhelmed on a daily basis being back to work...it all started to feel very mechanical and I hated it. I am trying to slow everything down but it is tough when I feel like I am not doing any of the zillion things I am doing well.

Not sure if it helps knowing that there are other women out there who, at any given moment in a day, is feeling somewhat similar. It helps me even though our experiences are not identical and no one can know exactly what any other person is feeling.

krlr said...

Ditto what Jen & MFA Mama said. We didn't have soft palate, but had other issues & we were actually discharged from the NICU on a feeding tube (which CAN be done at home! Don't them tell you differently... but then there's the day care issue??)

Anyway,we never got the Gtube, but the NG tub is a pain in the a** (just in keeping w/the general theme here). Baby will DEFINATELY pull it out at 3am. It gets nasty (it runs thru their nose - duh) but changing it more often is irritating to babe - physically & emotionally, esp if kept in long term (holding & forcing tube down their throat - panic/tears/badbadbad moments).

Also the machines they rent you for a gazillion dollars are not the fancy user-friendly ones in the hospital. They look like they were stolen in 1978 from an E.Europe institution.

Final thought - no one wants to need Early Intervention but I suspect Ainsley will qualify by birthweight alone. The therapists are BRILLIANT and inventive. They've tried every bottle/nipple out there & will make their own if they have to (not really on the last bit). Good luck!

Michele said...

please check out this blog and contact her! I think she could be a great resource for you regarding cleft palate.

Michele said...

link would be good!

http://travisjenny.blogspot.com/

Spit Happens said...

Ok so we did not deal with the cleft palate which I know is what your really asking for here, but we did deal with things being totally held up because Lexi couldn't figure out how to eat on her own in the nicu and was tube fed. She did not understand "suck swallow breath". She only knew "suck, suck, suck, suck, hold breath, turn blue, stop breathing, desat, choke, brady and repeat". It was a disaster. We ended up getting her on the haberman bottle which is actually made for babies with a cleft palate. We had to pace her on that for a long long time where I had to watch her coloring closely, only let her have a few sucks, pull the bottle out, wait for her to breath and repeat. She is 15 months old and we have only just now gotten rid of that whore of a bottle. But even though I talk smack about it, it saved us from having to stay in the nicu, so try it if you haven't already. Also, we visited a g-tube many many times because my daughter does not like eating. She never has and there was a period of time between 3 and 10 months old that I had to feed her in her sleep so she wouldn't starve herself. We warmed up to the idea of a g-tube and it started sounded pretty good to us compared to feeding her round the clock at night during her sleep, so there are advantages to it, but obviously, you want to do what you can. My advice is if you end up doing the g-tube, get connected with a feeding therapist for Miss Ainsley who can help work with you to get her orally feeding in the next few months to help wean her from it. You'll have the support you need to get through this and have a plan in place. And congratulations on moving through the checklist and getting her off the vent!! That is so huge!

Sara said...

Jenn... I have a friend with a CP baby, but she breastfed, so this is a little out of her realm.

She suggested this site:

http://community.babycenter.com/groups/a56125/cleft_lipcleft_palate

and to HAMMER them with questions. Apparently they're quite nice. Hope this helps!

crewlade drinka said...

I am a sahm but was a surgery resident, spent 4 months in pediatric surg and nicu during my training. I agree with all the posters with specific experience dealing with cleft palate. Your nicu should be making sure that speech is involved and that every nipple option is tried to help her get suction. Paci is very imp too. she must learn to suck and swallow and assoc with full tummy as op have said. I also agree that a gtube is prob not absolutely necessary(esp if all the above has not been tried, and it can take a while). (and you decide if she needs surgery, the drs can only recommend- sometimes they jump the gun imo)also, you may want to talk with plastics and neonatologist to find out a possible time frame for palate repair. it might be delayed a bit due to her prematurity, but I'd want to know since you are considering a gtube to get her through to this surgery. good luck and congrats she is doing so well!

Beth Rutter said...

No smoke up your ass here... I can't speak as a parent, but I have been a developmental specialist for 10 years and have worked with lots of babies like Ainsley. If you get the gtube ALWAYS try to feed her by mouth. The kids that never get off gtubes are the kids whose parents don't feed them by mouth. (This is assuming they are cleared for oral feeds.) If you haven't, get a good OT evaluation, there are nipples out there that work for kids with cleft palates. If for whatever reason you cannot feed her by mouth make sure to do lots and lots of oral stimulation. This time is critical to teach her to eat by mouth, if she doesn't at least try to learn now you'll have a long road of tube feeding in your future. Not trying to scare you, just let you know what drs won't always tell you. If the ONLY way to get her home is a gtube, do it, but concentrate on oral feeds (again, only if she's medically cleared.) And, make a referral to Help Me Grow, they will help you so much more than you can imagine!

Good luck, she's a tough cookie, and the feeding stuff will kick in, it just takes some kids longer than others and did you really think she was going to go easy on you? ;)

Flmgodog said...

My daughter was born with a cleft palate (soft). Feeding sucked (literally) for the first few weeks. We used the Haberman which is what we were sent home with. It looked like a goat bottle. Once we switched to the Pidgeon bottle after much struggle with doctors and practioners she did SO MUCH better. Plus the kiddo doesn't have to work so hard to get food. No matter what way she gets food, the special bottles, NG, G-tube, the oral aversion thing is a big deal. We got lots of guidance and it was so helpful. Don't want to hijack your blog, email me if you want assvice.

Kahla said...

No assvice from me, which is rare, cause usually I have diarrhea of the mouth. Totally kidding, but wanted to type that because it makes me laugh. Just sending prayers that it all lays out for you.

Olivia is adorable and makes me smile every time I look at her. You are so goign to have your hands full (in a good way of course)!

Now off to read the other blogs because Ainsley is right, I'm a lazy whore which is exactly why I'm not grading papers like I should be. Smart girl. ;o)

Teresa said...

Check out www.allthingsgd.com
Dusty's daughter had a cleft palate.

nyanarose said...

Can't help with the cleft question, but we're going in for g-tube surgery tomorrow morning, so if you find yourself there, I can probably help you out then.

All I can say is what's already been said -- dotn't rush the feeding. It's exhausting to bottle feed; my 27-weeker has really bad lungs and just taking 10mL from a bottle set her back about a week, respiratory-wise. Follow her cues and you'll be great.

Liz said...

No advice because I'm in a similar spot. My NICU baby doesn't have a cleft palate but she doesn't want to eat much and the doctor has approached the topic of a feeding tube. Anyway, I'll be following along to see what you learn and maybe we can compare notes.

Sabrina said...

My nephew was born with a cleft lip and palate although he wasn't premature until his 1st surgery they gave us a bottle that we were able to squeeze since he couldn't suck took awhile to get used to but within time he was a pro

Shelly said...

Jen:
I've been an avid reader and am 1) so touched by your story and 2) a huge fan of your sarcasm and wit!;) Anyway, my daughter Ava, who just turned 1 three weeks ago, was born 6 weeks prematurely last February. She did great with every NICU "green light to go home" requirement but one ~ feeding! The child would not take a bottle if her life depended on it (and it did!). After days and days of persistence, patience, and a whole lot of coaching from the world's greatest nurses, we got little miss where she needed to be! They had us hold her sitting upright, being sure not to rock while in the rocking chair. They told us not to make her too comfy during feeds (no swaddling, etc) and to be sure she "understood" this was a "job". They instructed us to cup our hand around her chin and almost massage her mouth into a sucking motion. Again ~ it was not as easy as it sounds but we got there and are proud to report she's now shooting for a spot on the first season of Biggest Loser Babies! Best of luck to you and precious little Ainsley! We're pulling for you, girlie!

Brianna {four if by sea} said...

gah! that is the cutest old lady in the world. just want to kiss those cheeks right off. This will be behind you soon! closely followed by two teen girls fighting over clothes ;)

mandybethp27 said...

My son had a full cleft lip and palate and had similar feeding issues in the NICU. We kept him in the hospital until he could successfully feed from a Haberman bottle. He was in for 7 weeks (he was born at 34). We had a speech therapist on board to help with feeding from the time he was born and they continued to come out to our house to help with feeding- including solids and table foods- until after his palate repair. When they talked about sending him home on an ng tube it made me very uncomfortable b/c I have 3 other kids (including his twin sister who was a newborn obviously) and couldn't be running to the er everytime he pulled out his tube. He pulled it out a lot.

Have they tried a Haberman? My little guy is 2 now and doing great! Best of luck to you.

claire said...

no assvice on how to feed a baby who has a soft pallet, my kiddo was 11 lbs and born to eat so...i guess i lucked out! Maybe he could give Ainsley some pointers hehe.

In the picture of Olivia, her chest clip on her car seat should be right below her arm pits! She is also still just a little peanut and I would personally rear face her in the car still because that's what is safest to me.

http://www.car-safety.org/rearface.html

Hope that helps!

Jill said...

No real advice on the feeding since my baby didn't have a cleft palate... we were in the NICU for only 19 days. But I am appalled by your stories about how the NICU staff treats you. I'm so sorry this is your experience. I hate that the doctors don't tell you details about what's going on. I hate that they act like it's your job to find the right nursing staff for your baby. I hate that you're not getting referred to good specialists for these feeding issues. I so wish you could get transferred to the NICU we were at... It was a completely different experience. Please don't accept what you're getting from these "professionals". SCREAM til you get what you need. Don't let them walk away without giving you what you need. Ask questions until you understand everything. I'm so so sorry you're being treated so poorly...

Good luck with getting on the road to going home. Those last days and the last few bits of things that have to happen can be excruciating... Sending good eating vibes your way!