…two steps back.
Yikes. Not that I thought Aleck would come home from the hospital and turn into a totally different child, even though that’s what I was wishing and praying for, but this gives a whole new meaning to “slow & steady” and it’s been taking a tole on the whole family. Our first two weeks home were, well, we survived. After about a week home Aleck was taking almost all 4oz from all 3 bottles in addition to a decent amount of solid foods as well. Sometimes it felt like he didn’t totally finish a bottle just to drive me insane, and sometimes it felt like I didn’t give him enough and he would have taken more if I had only made more. It was like being stuck in some kind of a perverse purgatory where you definitely haven’t hit heaven yet, heaven being a child who takes 5-6 oz from 3-4 bottles a day, and you aren’t in hell anymore, which we’ll just call this past December.
If you couldn’t tell I was panicking when we left the RIC. Physically Aleck was doing so well, making huge improvements, and very close to the baby I had before hip surgery, blah, blah, blah. That’s not what was bothering me, I was terrified of taking him home and being alone to wage the war on food all by myself again. And since he was rejecting the NJ tube while we were still there, I knew it would just be him and me facing off on every bottle, every spoonful of yogurt. Turns out it was way worse than I thought. Not only was feeding him akin to solving some ridiculous algorithm where every detail, every placement of x & y, played a part on whether or not he ate his yogurt today vs yesterday, but he was throwing up 4 days a week every other week. I would spend an hour gently coaxing a lunch in him, switching up my solids with my purees, quietly offering him the spoon since it’s not supposed to be a big deal, giving him bites of Cheerios and avocado in between just to have him choke on the 7th Cheerio of the meal, watch his little face turn all red, and then hunker down for the avalanche of vomit that followed. After a bath I’d put him down for his nap, or to bed, feeling once again that all of that hard work had gone towards nothing.
So of course we’ve been really hopeful that the removal of his adenoids and tonsils would at least lead towards a better feeding experience, and for the most part it’s been some better. In the two weeks since his last weigh in he gained 12 oz, which is almost an ounce a day. When he coughs or chokes on a Cheerio or some apple juice, the rest of his meal has remained intact in his little belly. He’s been able to eat a full lunch and go down for a nap without leaving me a present in his crib(and in his hair, all over his face, in his ears…yuck). And when I bring him a bottle he’s been diving for the nipple(insert Craig joke here). Though he still doesn’t breathe through his nose when drinking his bottle, he no longer sounds like my grandfather when he sleeps.
One of the many side effects of this past hospitalization is Aleck’s need to gain some control. In my last entry I spoke about how difficult it was to leave his side even for a moment when we first got home, and that part has gotten much better but there is still this level of distrust that has been very upsetting. When we are dressing him he gets upset when I try to sit him up so I can put on his sweatshirt or pj tops, literally screaming at me like I’m sticking knives in his knee caps. For over a week he screamed everytime I put him down into his crib and Craig had to come and calm him down before bedtime. And of course giving him his medicine is now a headache every morning where it used to just be part of his routine. In the meantime Aleck has gotten a lot more verbal so we decided to take advantage of that and try to give him some control back in life, we taught him “All Done”. And it sounds like “A Dog”, and it sounds like “A Duck”, and it sounds a little like “Adadada” which is his way of saying “Dada”. And he says it for everything. When finishing his medicine, in between sips of bottle, in between pages of a book, in between courses of his meal, while playing with his toys, while the therapists are trying to do his exercises, while he’s getting stretched, while he’s getting dressed, and Craig swore he said it at the end of a poop the other day which is really very helpful. The downside, we’ve created a two year old with very strong opinions and he’s barely at the 16 month mark. But we’ve given him some feelings of control and power since he really felt so stripped of all of that during our last visit to Lurie.
And now we are taking those two steps back. On Monday Aleck came down with some kind of a stomach bug which he has generously shared with Craig who woke up at 4am this morning with his own symphony of bodily sounds. So of course, Aleck threw up for the first time since his surgery on Monday, just as my mom came over to relieve me so I could go and see my own doctor. Being the overacheiver that he is, he threw up twice and had some other fun stuff that comes along with a stomach bug. So he’s barely eaten anything since Sunday night, he threw up again this evening, and his high chair is ready to be condemned as I don’t know if I can get any more of the vomit out of the straps. Ugh. For me what’s so hard about all of this is that my mood rises and falls with each unfinished bottle, and I question with each puking if it’s just the bug or is this still a problem we have to solve. I know there isn’t much more I can do, I know that we can’t, as a family, survive another surgical procedure right now even if it’s just to put a feeding tube in him. We are so spent, financially and emotionally, we have nothing left to give. No more energy left in us anywhere and it’s a really depressing feeling. What was supposed to be a routine surgery knocked the wind right out of us and I don’t see any respite in site. Instead I daydream about spending an entire weekend with Craig locked in a hotel room with nothing but movies and room service. Or I dream about the three of us taking a long beach weekend somewhere warm with family close by. It’s these daydreams that just helped me get through my 4th load of Aleck’s laundry this week, and it’s only Wednesday.
On another note we’ve set up a new donation site to help us out with all the little things like collection calls from Lurie, diapers, food, gas, and other basic needs we have to fulfill in order to sustain any type of a quality of life (and I’m not talking about sushi, though that would be nice ;). Please feel free to donate here and know that most of the money is going to Aleck’s family. If you’d rather you can donate directly to us, contact me for the details, or you can send gift cards to places like Target, Trader Joe’s, Babies R Us, Amazon. And if what you want is to give a gift that will make Aleck smile, his favorite word right now is “A Book” and we are currently reading 12-16 books a day here especially since he hasn’t been feeling his best it’s about all he wants to do right now from the minute he wakes up until the minute he closes his eyes. Of course you can’t hear the “K” so you have to guess that it’s “A Book” and not “A boo”, or “Apple”, but the way he throws himself into a tizzy when I reach for “Are You My Mother” for the 1 gazillionth time, it kind of takes out all the guesswork. But I’m not complaining, spending our time sitting in his glider by his windows reading books, I’ll take that.
