How did we get this far?

Silliness. 

Silliness. 

Poodle turns nine months old today. Here's a little update. She’s awesome! I don’t have a very large sample size, but she is just about the most outgoing, happiest baby in the world. She waves something fierce. This morning, D started talking to her as he walked up the stairs to her room, and she waved at his voice. She also might think she’s a dog? She pants and licks things. In any case, two introverts somehow produced a definite extrovert. I love watching her get excited by people and her general openness to the world, but I am afraid that her sociability will mean that I'll have to talk to more people than I ordinarily would. And ordinarily, I talk exclusively to people that I already know.

We have a number of checkups this month, including her craniofacial surgeon, ENT (oh boy), pediatrician, and dentist. She now has four teeth. Her bottom ones are all perfectly in line, but the top two are at odds with one another. I got a little worked up when I first felt that second top tooth coming in slightly behind and perpendicular to the first one, even though I knew this was going to happen. I mean, the dentist warned us that because the top of her mouth is all over the place and nothing is where it normally is, we might get teeth…in the cleft. Can you even imagine.

This might be totally boring, but I thought I’d talk a little bit about how S, a girl with no roof to her mouth, a cavernous palate cleft, and two facial clefts, eats. She was born weighing 6 pounds, 8 ounces and not a single person on planet earth knew how to feed her. Direct breastfeeding was out, which is a decision her father and I made for ourselves before she was born*. Though, even the lactation consultants at the hospital were like, NOPE. The NICU doctors and nurses tried the Haberman feeder, which is now the Medela special needs feeder, but everyone still calls it the Haberman feeder. They couldn’t get it to work. So she was on a little feeding tube for about a day. Then the brilliant overnight NICU nurse figured out how to get her to take the Enfamil cleft palate nurser. This was the bottle our craniofacial nurse preferred, I’d looked up pictures of it on the Internet. The bottle uses a normal nipple, but the bottle itself is made of a pliable plastic which you squeeze when she takes a “bite.” The nurse trained us to use it, which, neither of us had ever fed a baby before, we would literally shake when we had to do it. The process involved us using one hand to both squeeze her clefts closed and squeeze the bottle. We knew we had a half hour to do the feedings, and trust, using one hand to preform separate squeezes for a half hour several times a day is terrible and I knew that this practice was unsustainable.  A speech therapist came to visit us in the hospital and told us that we shouldn’t squeeze her clefts closed. S needed to learn how to adapt to her clefts, who knows how long she’d have them and we couldn’t close them ourselves forever. That was a relief, and we were still able to feed S successfully. Kinda. She was a sleepy newborn, and feeding was incredibly draining for her. We were lucky to get an ounce down her. The NICU doctor discharged her once we were consistently able to feed her an ounce-ish per feeding.

And btw, we used to count in milliliters, not ounces. Like, we were stoked for a 23mL feed.

Well, the ounce (30 mL) was not enough. S continued to drop weight when we went home. She went down below six pounds, and we were struggling to even maintain that weight. We were constantly going in for weight check-ups. D and I were so worried, we didn’t know what to do, everyone was at a loss. We just couldn’t get everything done in the allotted time. She fell asleep the second the bottle came out of her mouth, but we were having to do just that in order to burp her every 5-10 minutes,  she took in a ridiculous amount of air through her clefts.

On top of the feeding drama, I was getting jerked around by our insurance company. The Enfamil bottles aren’t easy to get a hold of, and the hospital sent us home with a limited supply. One bottle lasted for three to four feedings.  We were running out. We needed more, and we needed our insurance company to help locate and pay for them. One night I had the brilliant idea to make a bunch of bottles at once, but I neglected to mark which bottles had already been used. We had to throw them all out. Meltdown city.

Luckily when I freak out, D snaps into action. He tore into the bags of stuff from the hospital and found a Medela special needs feeder, with the mini-nipple. He got it to work. It uses the normal Medela bottles, but with a fancy nipple. Instead of squeezing the bottle, you squeeze the nipple itself and control the flow. Being able to make the flow super, super, super fast changed our life. And she has always preferred, nay, will only acquiesce to, the mini nipple. I guess the standard one bothers her cleft. She quickly started to eat more and gained weight. She even started to chomp hard enough that we no longer have to squeeze the nipple, we just have to ensure that the flow is correct. As has been previously noted, she is humongous.

I promise I’m not benefiting from any sort of mommy blogger payola, (though, companies, I totally would! My integrity is overestimated!) but no joke, that Medela special needs feeder is just amazing. I genuinely encourage all parents of babies with eating difficulties to give it a shot. It doesn’t help with reflux and until the baby gets used to it, causes an increase in hiccups, but if your issue is a baby who, for whatever reason, is not taking in enough milk or formula, this bottle/nipple works wonders.

The only issue with her bottle feeding now is that the mini special needs nipples are expensive and difficult to procure (you can sometimes find the standard one in a normal store), but we are extremely lucky to be able to afford the money and time. She’s an old baby now and we have been instructed to start training her to use a sippy cup because after her palate surgery, she won’t be able to use a bottle. And not just any rando sippy cup, preferably a cup without a spout. Bottles and long spouts and straws mess with the stitches and the surgeon's palate masterpiece (seriously, he will have invented a palate out of nothing). So we have to get a 9 month old to use a toddler cup. It’s…not going well!!! This post has gotten super long, so maybe S’s adventure with solids will have to wait for another day.

 

*Rant: Use formula. Breast feed. Pump. Exclusive. Combination. Whatever. Moms of the world, you do you. From experience, if something isn’t working for you, it is not working for your baby. Also, it’s no one’s gd business anyway.