Well, hell. Simone failed Bottles. Her speech therapist (Speech! I know! So advanced!) has tried various nipples and feeding positions and pacing techniques, all to no avail. Give my girl a bottle and she gobbles at it, aspirates milk into her lungs, and stops breathing. A swallow study has been ordered for tomorrow morning.
What I find so damnably frustrating is the fact that she can take full feedings by breast with no problem. We use a nipple shield, but the rest is all her: she sucks like a champ, remembers to stop and breathe, and even does this comedy bit where she growls and shakes my nipple like she’s trying to break its neck. The lactation consultants came to consult but left unneeded, shaking their heads in awe. Alas, Simone will be sent home on a growth regimen that includes two feedings of milk fortified with formula, and if she cannot take those feedings by bottle, she will end up with a g-tube.
I do not understand. Obviously she can drink without aspirating, because she does it several times a day via my mammaries. Simone’s nurse can’t remember another baby who couldn’t take bottles yet could breastfeed. My child is a puzzle wrapped in an enigma wrapped in a milk-stained onesie. The best-case scenario would for the swallow study to show that she does not aspirate as long as the milk is thickened with rice cereal, so let’s hope for that. Better yet, let’s hope this has all been a clever ruse designed by my daughter to bust out of the NICU for an hour, and that once she is down in radiology she sucks down an unthickened bottle without incident.
Until tomorrow, I leave you with a video. The first act is a simple rendition of the hiccups, but the second act showcases the “door in a haunted house” sound effect Simone has been perfecting for weeks now. And at the end of Act III…well, see for yourself:
UPDATE:
Simone aced her swallow study. Unthickened. No aspiration, not even a suggestion of milk that looked like it might be considering possibly heading for her airway. As this is the only of her dozen or so attempts to bottle that has not ended in alarms and a blue baby, I am thinking my “clever ruse to score a field trip” idea is the only explanation. The speech pathologist was baffled.
“I can honestly say I have never been more wrong,” she said. But it’s not her fault that my child is so contrary. I swear the radiologist thought we were making the whole thing up, for kicks.
As Simone obviously can bottle feed safely, the plan is simply to keep trying and thicken with rice cereal if needed, to slow things down a bit. I saved the bottle they used (same kind as yesterday) just in case it has Magical Powers. The upper GI series showed grade 3 reflux, but that was no surprise.
So, uh, move along, nothing to see here! G-tube threat level reduced to Puce, or NONEXISTENT.
{ 130 comments… read them below or add one }
Next Comments →
That is by far the cutest thing I have seen in a long while. The Haunted House noise is spot on! Thank god I wasn’t drinking anything when I first heard it, I am still laughing! I am in awe of how wonderful and beautiful she is, this Miss Simone.
And P.S. the smile she gave when you said, “Hi, honey.” Priceless.
Oooh, that smile!
Hi! I’ve never commented before but have been following along with you and Simone since Julie mentioned you on her blog.
Has anyone mentioned using a Supplemental Nursing System? Not sure if it would work in your situation but it is an alternative to giving formula via a bottle. Hope that helps!
OMG, so cute! She is totally chubbing up, I love it. And that thing she’s doing in her sleep, looks like sucking to me, mama! My kid still does this in her sleep after her soothie has fallen out. Hopefully she just prefers smoothies to milk. Thanks for sharing!
Sooo cute. And that smile — I just melted. You must have been a puddle on the floor. Here’s hoping she makes fools out of all those experts tomorrow. Go Simone! I can’t wait for her to go home with you.
:-)
Oh. My. Gods. The cute, it hath slain me.
I’ve been kind of on the fence about the possibility of babies in my future, but after that, I think my ovaries are starting a picket line.
Congratulations!
Oh, she is such a cutie. I have to say, Alexa, that I am very grateful that you decided to share Simone’s story with the Internet. She’s so cute! And strong! And awesome! So thanks for that.
What a beautiful smile!!
YAY!
Oh she is soo cute. And looking so chubby too. I hope that she passes the swallow eval ok.
That haunted house sound is the best thing i’ve heard in a while… wonder if i can teach my baby to do that? LOL
Act III made me cry. I want to eat her up with a Winnie The Pooh spoon.
Okay now I have to go back and see Act III again. I love her.
Oh my gosh, that funny noise. What a beautiful little chubby baby!
Have they tried a SNS (supplemental nursing system?) http://www.medelabreastfeedingus.com/products/breastfeeding-devices/51/supplemental-nursing-system-sns
It’s a bag that hangs around your neck that you would but the fortified formula/bm in and then a little tube comes down and sits at the nipple, so when she sucks she would be getting the formula at the tap like she likes it. :)
Is it possible to send her home with the NG tube still in until she can master bottles? Sometimes babies figure out they’re going home and like to throw a wrench in things. It always happens shortly before discharge. The night before my son’s discharge he decided to have a bloody diaper.
I love her smile at the sound of your voice. She certainly knows her mama and is so chubby now.
You made me cry. Dammit. But it was worth it.
Like Vanessa, I got here via Julie’s site, and the first thing I thought when I read this was “Supplemetal Feeding system.” Surely they have tried that already, right?
Clearly a breastfeeding savant like Simone is merely toying with everyone.
Hmmm. Why does she need a bottle exactly? You seem to be doing just fine, and darling Simone seems to be nursing and latching well. So why does she need a bottle, and why does she need a GI feeding tube? She is clearly chubby and gaining weight. Your boobs are doing a great job, no? When my daughter was born (4 lbs, (a giant by comparison, I know) and 37.5 weeks), I was told that she needed supplemental feeding. I left with a whole pile of supplemental feeding tubes, bags and bottles, but it really didn’t feel right to me. At the end of the day, I just nursed her myself, without any supplementation, and she was fine. In fact, she thrived and followed a good curve. She will be six years old on Wednesday, and now, after being the shrimp in her daycare class for ages (it does take a while to catch up), she is the tallest one!
Little stinker (cutest ever stinker) – just a gal who knows what she wants and what she doesn’t want.
My NICU boy was pretty much the same way. The nurse pronounced all sorts of gloom and doom pronoucements. Baby not going home, tube feedings, yada yada. Put baby to breast and he went to town like “about freaking time people!!” Given said NICU son is going on 8 and still wants things HIS way and shalt have NO OTHER WAY before HIS way, I’d say you are in for a real ride with your little sassy miss!
Can you hear me going “AWWWWWW” from there? I totally woke my dogs up with it. That smile is just TOO cute! And those cheeks!!! Oh my Stars, is she adorable!!
All three acts were lovely to watch and that smile at the end was awesome. Thanks for sharing!
This may not apply at all, so feel free to disregard, but one of my guys had no problem breastfeeding but just could not get the hang of the bottle. What I had to do with him was let him suck no more than 2-3 times on a bottle and pull it out of his mouth. Lather, Rinse, Repeat until the bottle was done (he didn’t get bottles often so it wasn’t a big deal to have to do that occasionally). He would think bottles were pacifiers and just keep sucking on them and not actually swallow. Then he’d choke and cough and spew milk everywhere. Eventually he got it.
My baby choked on formula, too. Instead of adding rice cereal, you can get the formula with the rice already added – we use Enfamil AR (added rice, get it?) and that worked like a charm.
I’m really glad that you have the option to breast feed. My milk never really came in despite several rounds of medications designed to improve lactation. Useless boobs! Thank goodness they look pretty.
I have my fingers crossed for Simone tomorrow!
Alexa, haven’t you discussed working from home and not using day care for a while? If you can do all the feedings, the only reason for a bottle is the supplementation to add calories. Supplementing is fine if you really need it, but do you? You have a five and half pound baby after three months, which is amazing and fabulous and the medical folks who post here can probably tell you better but it seems to indicate an excellent growth rate. I hated the supplement beause it gave my Claire raging diaper rash, and who knows what is in it? Now obviously we are all glad about the medical intervention you and Simone have had so far, but at a certain point it seems safe to rely on your natural feeding ability. The fortifer makes breast milk 22 calories an ounce instead of 18, it just isn’t that much for two feedings a day, and a g-tube is so much more invasive than an NG tube (or nothing but the breast she excels at using). Trust your instincts, you are obviously good at milk making or she wouldn’t have those cheeks yet.
That smile!!
Look at her! She’s like a regular baby! You guys are so close.
We call that noise The Rusty Gate at our house. I never got tired of hovering over my son and soaking in that creak. He left it behind a few months ago and I was sorry to see it go.
The smile is dreamy. You two clearly have a special connection formed by beautiful, terrible circumstance.
I think alot of other people mentioned supplemental nursing feeding thingy.
My first thought was a cup or spoon.
Reverse nipple confusion…hehe.
love. that. video.
more please. :)
Here’s hoping that you don’t need the g-tube!
But if you do, do know that it’s pretty much a cakewalk compared to what you’ve already been through. (My son had a g-tube from age 2-4, though his issues are completely different than your daughters).
My only point being, no, it’s not fun and Of Course it’s not the preferred path. And the mere fact that one’s child might need one Sucks (big time!) but of all the surgical interventions one could have, it is, well, not that horrible.
I’m so glad to read that she’s nursing fabulously!
That video is so precious … she’s come so far.
Adorable!
What a sweet little pumpkin… actually, sweet BIG pumpkin, now! She’s definitely graduated from the bin with the Indian corn and lacquered gourds.
Assvice: I don’t s’pose it’d be possible to use an SNS for the OPPOSITE of its usually-intended purpose (to supplement boob with bot instead of vice-versa)?
No wonder she keeps winning Baby of the Week.
Add me to the chorus of Why Does Big Beautiful Baby need supplement? Right now this instant? More assvice — I know they’ve probably tried everything, but my old LC recommended munchkin brand for wee ones when introducing breast/bottle simultaneously — apparently this cheap ass probably toxic brand worked best in her experience. Never needed it, but had it packed in case they did at the hospital.
Simone, you’re cute, you’re adorable, you’re downright chubby. Now go home.
I don’t have bottle advice, but I just wanted to point out that OMG that’s a baby! Look at that cute baby!
My gal (middle name Simone) went home from the hospital on day 3 at 4’13 (no NICU, born 36.6) The only supplement we gave her (for about the first month of her life) was offering a bottle (of my pumped breastmilk) after every feeding with me. So it’s like she ate twice! While my husband or mother in law was giving the bottle, I pumped! Cool, it worked. So pump away and store it/freeze it. I had to use the nipple shield on one side and just like the LC’s say, one day you can’t find it and don’t use it and never need it again. When she gets home your milk production is going to increase, so be prepared.
oh, the cuteness. oh the little smile. oh wow.
WTF? Boob but no bottle? I didn’t know that was possible.
It’s hard to believe that she’s keeping up the ruse to bust out of NICU. Look at that little face. There’s nothing nefarious about that face.
But maybe that’s her trick.
Any chance she could get an ng-tube instead of a g-tube if she really does need it? Or would they let you try going with just breastfeeding and checking her weight to keep an eye on things?
Good luck Simone!
Just adding my 10c worth, in my long career as a home-based daycare provider, I came across several babies who just would NOT take a bottle no matter what was in it! To them, food came from a breast or a spoon. The SNS sounds the most promising idea but, as with other commenters, I don’t really understand why Simone needs supplemental feeding at all. Your breast milk seems to be doing the job just fine. Given Simone’s current weight, why does she need extra calories from an artificial source? Hey, on second thoughts, maybe she’s hanging out for champagne!!
The video is beautiful, she’s such a little treasure. Well done Flotsams.
My son also never got the hang of a bottle. It was breast only for him until he was old enough for a cup. I think some kids are just like that. Good luck. She is such a cutie.
The cheeks! So scrumptious! Must eat them!
Maybe Simone just prefers the boob. I mean, really, when you think about it, is there something so wrong with that?
Awwwwwww — a smile! That is some seriously cute baby you’ve got there.
Awwww…one more time…AWWWW…and now we’ll move on to the assvice portion of this comment…since she takes milk from the breast without incident, it seems like a damn shame to do a g-tube JUST for those two feedings a day with the extra calories. If the NICU team is at all open to suggestions, you might ask if you could try pumping for two or three minutes before each feed to get the low-calorie foremilk out of the way and then let Simone nurse and drink the fat- and calorie-rich hindmilk at every feed for a few days and see if she maintains and/or gains THAT way. You could even freeze the “skim milk” to use later for mixing up cereal when she gets old enough for a spoon (breastmilk will keep for a YEAR in a sub-zero or “chest” freezer–HAHAHA CHEST FREEZER, GET IT, CHEST? I slay myself). I myself have a kid with a g-tube (my kid’s esophagus was eroded to the point of utter uselessness and we also have a few genetic issues going on, so TOTALLY different reason) and am the first to tell people how easy to care for and even convenient (“don’t like the taste of your meds? Uncap and say AHH”) they can be, but it aggravates me, the idea of them putting a baby through surgery before trying EVERY OTHER OPTION. If they DO decide to do the surgery, make sure you pre-fight the battle over pain relief. Since Simone would be going from NICU to surgery and back for her recovery maybe they wouldn’t be so stingy with the drugs, but when we had it done and were admitted to a regular floor they refused to give my baby anything for pain, even TYLENOL, until I physically went and GOT the surgeon and made HER come and listen to the screaming for a bit…they tried to tell me the surgery was SO MINOR and NOT PAINFUL, but my response was something along the lines of “okay, let me stab YOU in the abdomen with a metal skewer and see if YOU would like some Tylenol (or morphine) afterward.” That said, it really isn’t a huge deal, the surgery itself, and will reverse itself within MINUTES when you pull the tube out, which I think is why they are so quick to do them, but I…I dunno, I kind of think Simone has been through enough that they ought to cut her a friggin break on this one. The SNS idea may have potential, but I’m worried that that increased flow could present the same problem as a bottle as far as being an aspiration hazard, and I kinda doubt they’d let you nurse her with an SNS full of barium in front of a flouroscope, although if they do YOU MUST BLOG IT, YOU MUST YOU MUST YOU MUST!
OMG, adorable! The smile at the end was the icing on the cake…
Oh that little grin is just enough to melt me into a puddle.
I too am perplexed by the need to bottlefeed Simone when she is getting breastmilk. Why? Is it just that they want to make sure she gains weight quickly? Why not make sure that she’s getting plenty of breastmilk by sending her home with her mama? Go Simone Go!!
The smile at Mom’s voice, doesn’t get any better than that!
Next Comments →