9 weeks: grateful for “almost”

Ash has finally decided to like — nay, LOVE — his swing, which means A) we didn’t waste our Target gift cards, and B) he is happily snoozing away, which gives me a little time to write/eat/relax. Ah. My kind of multitasking.

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People are fond of saying the first 6 weeks with a new baby are the hardest. I think when I talk to new parents, I’ll say to them that the first 2 months with a new baby are the hardest. Give or take a few weeks.

And then I’ll say that no matter how long things are kind of nutso, it all gets markedly better when your baby starts smiling at you. Which, thank God, is pretty early on in the process.


(A smiles with his eyes. He gets this from his dad).

Our first 2 months weren’t hard the way some people’s are. I look at my chunkster of a son who is growing too fast for his clothes to keep up with him, and I’m thankful everyday that we aren’t dealing with the kinds of burdens other people are asked to bear.

That said, we still had some difficulties that we are just now getting ahead of. I have no problem admitting: things sucked there for a while. They stretched me in ways that were searingly painful and made me feel crazy sometimes. There have been moments I’ve grieved the loss of what I’d always thought this season would be. I loved my son instantly — it’s just that his first days here were frustrating and stressful.

But I think we’re finally on the right track. (And Justin appears to still want to be married to me despite a few months of me crying more than any grown-up should).

Below are the details of what’s going on. It’s kind of a daunting read, so feel free to skip to the general gist at the bottom. I especially wanted to include this for other people who might find themselves dealing with the same thing. After this, and an obligatory post about breastfeeding somewhere in there, I’d like to get back to talking about all the fun stuff. And there is plenty!

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After a few visits with the lactation consultants weren’t getting us very far (I could hardly feed him, his latch was so bad . . . felt like razor blades), one of the ladies there recommended I see a doctor in Seattle who specializes in caring for breastfeeding mothers and their babies. Dr. Mary Ann O’Hara was wonderful, and after correctly noting that Ash seemed to have some major mechanical issues with feeding (even on the bottle), she sent us to Seattle Children’s to see one of their Occupational Therapists. In the meantime, she advised me to take him off the breast as soon as he stopped really drinking and began to pacify, and switch him to the bottle. Best advice ever — my pain levels went down immediately and I stopped dreading every feeding. At this visit, we also clipped under his tongue to give him more mobility (so hard to watch, but he’s cried longer over being put in his car seat) which seems to have helped.

I packed up A and headed to Children’s — which, by the way, is totally awesome. Everything, from the free valet parking at the entrance, to their simple-but-secure check-in process, seems to be designed around families. I immediately felt good about being there.

I was supposed to bring A to his appointment slightly hungry. Sounds reasonable, except that my kid has no halfway point between “not hungry” and “ohmigod-you’ve-never-ever-fed-me-before-this-moment-no-not-once-and-I-will-scream-and-holler-until-you-feed-me!” He experienced the latter sensation in the waiting room, and by the time our OT came out to get us, both mama and baby were in tears.

Another high point. I thought I was done crying in public, but apparently I was wrong.

Robin, our OT, was kind and gracious and above all — knowledgeable. We put A on the bottle right away and immediately she got to work. I left the appointment somewhat overwhelmed, but much less in the dark as far as what’s going on.

A few weeks prior, I’d mentioned to Justin that it seems like A is always working really hard during feedings, even on the bottle — he always seemed out of breath. Well, according to Robin, A was out of breath — and to him it was a sensation similar to drowning.

I’ve already written about my son’s laryngomalacia (henceforth known as LM because I’m tired of typing it). We didn’t know there are a few other issues coming into play.

A also has mild dysphagia (difficulty swallowing), which for him means that he has difficulty coordinating between sucking, breathing and swallowing. He was doing a whole lot of sucking (ineffectively) and some swallowing and very little breathing. As he grew out of breath, he’d gasp, which put more pressure on his already narrow airway (because of his LM). The pressure of the more forceful breathing only narrowed his airway further. He also had milk going down the wrong pipe occasionally. Add reflux to the mix, where stomach acid was irritating his airway and causing tissues to further swell . . . not good.

Justin and I got to work.

• We began doing facial exercises with Ash everyday to help correct the muscle imbalances (likely developed while being slightly scrunched in utero) that are causing him to have so much trouble sucking & swallowing. He loves the exercises and smiles the whole time.

• We began “pacing” A during his feedings. Because he’s a little barracuda who doesn’t like to stop to breathe, we help him remember to breathe by allowing him three swallows, then angling the bottle down until he takes two breaths. Gulp-gulp-gulp breathe-breathe. Repeat.

• We also began adding thickener to his formula called Simply Thick that helps with swallowing (I didn’t know this, but thicker liquids are easier to swallow for people with dysphagia).

The thickener was a good idea, but for us it was a nightmare. Ash’s system did not take well to the thickener — he became gassy and fussy and constipated and didn’t nap or want to be put down for about 3 days. It was as if we had a totally different kid on our hands. I was so exhausted that one day I pretty much demanded that Justin come home from work early. (Another high point).

After a night spent agonizing over what to do (and while waiting to hear from Robin, whom I’d emailed), we decided to take A off of the thickener and see if we could achieve similar results through pacing. I felt badly — I didn’t want to wimp out if this was truly what was best for A, but he was just. So. Miserable. I thought at the very least we could take a break while we waited to hear back from Robin.

I wanted to believe that following my gut was the right thing to do, but I worried — hard — about if I was wrong. During this time, I told Justin that I’m pretty sure my last really good night of sleep was the night before I found out I was pregnant — and it has nothing to do with 2 am feedings.

Right after that “normal” feeding, he napped for 3 hours, was awake for an hour, napped another 3 hours, and then slept 8 hours overnight. Poor kid must have been exhausted.

Turns out Robin suggested trying it with just pacing anyway, so our gut was directing us well.

Following our 2nd OT appointment, we have A sleeping on a Tucker sling and wedge to elevate him while sleeping and we’re also giving him Zantac to help with the reflux. I hate putting him on medication so young, but knowing how all these issues can play on each other, I feel it’s worth it. The pacing and facial exercises seem to be helping a great deal.

We also have a $50 month’s supply of Simply Thick to figure out what to do with . . . Craigslist???

***

Laryngomalacia, dysphagia, and reflux are all words I wasn’t so familiar with before now — and frankly I would have been fine not knowing about them. Seeing the other kids at Children’s comes with a built-in perspective shifter, however: my kid will grow out of his stuff and be just fine by the time he’s a toddler. Though I’m gaining more grey hairs by the moment, A won’t remember any of this. A lot of families there aren’t so fortunate — they’re facing life-threatening illness I pray I’ll never have to watch one of my family members face.

All in all, things seem to be looking up. I’m grateful for the gift of “almost completely healthy” and be thankful for my sweet, cuddly, 13-pound chunk of a two-month-old (who, it should be mentioned, is sleeping 7 hour stretches on a regular basis at night. WIN!).

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