Wednesday, April 26, 2017


On Sunday evening we turned on Fantasia while Cory and I ate some Trader Joe's orange chicken and rice, and I started working on something for Ivy for dinner. Ivy popped over to my bowl for a few bites, and then sat down for dinner... and nothing stayed down. Crap. I knew exactly what bite of my chicken was the culprit. I tried pushing water, and she mostly just spit it down her front, and whatever did go down came back up. I tried pineapple juice, and she had a few tiny sips (which came back up) and wasn't interested in any more. So then we hopped in the tub. Usually I tell her not to drink the bath water because it's got icky bottom germs in it, but this time I let her help herself, and filled up her little bath toys with cold water from the sink as well. She drank quite a bit, but it all came up. So we got out of the bath and got in bed around 8, and I tried nursing her; she could get about ten seconds in and then started poking her fingers down her throat and I'd have to quickly push her into a sitting position so she didn't choke on the milk.

So I called the surgeon's office. I knew if nothing at all was getting down, it was time to start worrying about dehydration. The on-call resident conferred with her partner and called me back, saying "wait for a call from the hospital, saying a bed is ready for Ivy, and come on up." I got off the phone and had a tiny tantrum at the foot of the stairs. I couldn't believe I let it happen again. I was SO upset at myself.

While we waited for the hospital to call us, we hurriedly packed some toiletries and I got dressed. We left Ivy in her pajamas and grabbed some clothes for the next day, and a few dolls and books. It didn't take long for the hospital to call us, and we were on our way by 9:30pm.

Cory had gotten up that morning at 2am, as he was working on a presentation for work, so he was super tired by then and I drove us up in the dark and the pouring rain while he and Ivy slept a little. It was actually a really nice drive, just 'cause usually Portland traffic is the pits. But it was nice and light at that time!

We got to the hospital and went up to the pediatric unit, and settled in. The night nurses put Ivy's pulse oximeter on her toe, and set to work putting in an IV (for fluids) while she sat on my lap. She bled pretty good, but they got it in, and she DIDN'T CRY. I was amazed. She barely flinched at all. Kind of cracked me up later to think that she's the one who says "owie!" any time a kid touches her. Silly thing. The on-call doctor who I'd talked to on the phone also stopped by to check in on us and have us sign a consent form. "It looks like [a surgeon we hadn't met] can get Ivy in at 9 or 10, but she might be able to switch her with the 8am surgery." That was great news

By midnight, the nurses had finished taking vitals and let us go to bed. But by that time, Ivy was exhausted and stressed out, and wasn't able to nurse to sleep, so she cried and fussed until 2am, when she finally fell asleep in my arms and I was able to get out from under her and go to sleep next to her. (I didn't even try to get her in the crib they gave her; I knew she wasn't about to allow that to happen.)

At 4:20am, she woke up suddenly, which was actually kind of a good thing because about 15 minutes later the nurses came in to check vitals, which would have woken her up. I got to watch the dawn begin, which was something I did a lot when we were in the NICU, and it was nice. Ivy fell asleep a little after 5am again, as did I, until 7:30 when the surgical team came around to check in. They had decided to give her an x-ray first, before going in with the scope, which was going to mean a little longer stay. The surgeon said "we'll keep in touch," which brought me back to our original NICU stay, when we suddenly realized we were on hospital time, which meant "wait around for forever, and then suddenly things will happen."

We passed the time as best we could, watching a lot of YouTube videos (she calls them "La-La" because this video was one of her first favorites to watch), and reading books, and taking off her doll's clothes, until about 10:30 when a hospital worker came to pick us up and take us down to radiology. He put us in a little holding area while we waited, which was fantastic for Ivy because she wasn't hooked up to her IV or oximeter so she got to run up and down the little hallway outside all the x-ray rooms and get some of her energy out.

And then in we went, and she did a great job lying down on the table and calmly drinking the barium while the radiologist watched the x-ray screen. (Last time we did this, she cried and I had to sing to her to calm her down.) She even asked for more barium when it was all over, the poor little hungry thing. The radiologists were amused.

Then we were put back in the holding area while we waited for our transport back to pediatrics, so Ivy and I ran up and down the halls some more, and once we got back upstairs we hung back a little bit and explored the pediatric ward. We looked out some windows and climbed on some benches and walked around. Our normal surgeon's partner found us in the hallway and let us know that he decided to add her to his caseload that afternoon, which was nice to hear - he knows her esophagus well. We said goodbye to her and wandered the halls a little longer, until Cory texted me to say our nurse wanted to hook her back up to the IV.

Cory ran down to get him and I some food, which we took turns eating while hiding in the bathroom so Ivy wouldn't see us. Anytime anyone came by to ask if they could get us anything, Ivy started asking for "rice?" or "broccoli?" which broke my heart.

I was able to get her down for a nap a little after noon, and then a little over an hour later a transport suddenly showed up at our door, with no warning, to take Ivy down to the operating room. The nurse appeared as we were scrambling, apologizing, as she had only just found out herself. Hospital time strikes again. We were led down into the basement of the hospital, and said hello to the anesthesiologist, who happened to be the same one as for her original repair, which was cool. He was concerned that she wasn't going to appreciate them taking her away from me for the surgery, so he popped something into her IV, and after a few seconds she started having a hard time holding her head up and she started giggling. And then they took her away and we settled into the waiting area.

We always think it's not going to take as long as it does. They have to work on the anesthesia, and then do the procedure, and then she has to sit in post-op and wake up a little before they let us see her, which takes about twice as long as they say it's going to. So we wore down the batteries in our phones trying to pass the time for about an hour, and then the surgeon came out to tell us it was finished. He confirmed it was a piece of chicken again, and that it was stuck because of the lack of muscle motility at her repair site, but he went ahead and gently dilated her esophagus just a tiny bit to see if that would help, even though he didn't think it necessarily would. He said again that chicken and hot dogs are the most common things that get stuck in TEF kids' esophagi, and that we should just cut the pieces smaller. He said he understood us wanting to help her practice on slightly bigger pieces, though.

Someone came awhile later to take me back to post-op, where Ivy was practically climbing up a nurse to be held. She handed her to me, and Ivy immediately fell back asleep. So I sat in a rocking chair and held her for several minutes until our transfer came, and I carried her sleeping body all the way back up to her room, and sat down, and held her for three more hours. Poor girl was exhausted.

At that point, really all we were waiting for was for Ivy to drink clear liquid, and then milk, and have a wet diaper. Her pediatrician called from Corvallis, and said something like "I know you're a good mom..." and expressed concern that the same thing had happened twice now, and suggested maybe we stop feeding her chicken altogether for a couple of months. (I don't think I'll go quite that far, because it had been three months almost to the day since the last time, so holding off at that point would have done nothing; but I do think we'll probably stick to ground chicken for awhile.) Cory went back down and got us some dinner, which we ate, and by then I was getting pretty sore from sitting in one spot while she slept, so I decided to try to transfer her to the crib. And of course she woke right up. So we started in on a sippy cup of apple juice and pedialyte. She slowly drank about half of it and then was uninterested, and just wanted to nurse. So I let her nurse, and ended up pouring out most of the rest of the cup and told the nurse that she drank it all. (Bad, I know, but I knew she was doing OK and I wasn't going to wait a few more hours for her to finish the juice when she was also doing just fine with milk!) She drained me dry, and had a wet diaper soon thereafter, so the next time the nurse came by to do vitals we let her know we were ready to go home.

Ivy did fantastic yet again as the nurse struggled with several layers of tape and removed the IV, and we packed everything up and were out of there. Ivy immediately fell asleep in the car, and I caught a few winks myself. We got home around 10 and fell into our comfy bed.

Ivy has a checkup with the surgeon on the 11th, and until then she can't eat anything thicker than yogurt. This will be an interesting couple of weeks! Luckily she is still eating pouches of fruit and veggie puree, and enjoys yogurt. I'm grateful again for the little food processor/immersion blender that I picked up to make my own puree, it has already come in handy to make fruit smoothies and a macaroni and cheese frappe (ew). And pureed cottage cheese.

The guilt was strong with this one, friends. I was pretty shattered that it happened twice in three months, with the same food. It's so hard to balance being super cautious with helping her practice with potentially difficult foods. And as she's still so tiny as it is, having to avoid a healthy food that she likes is sad. But again, throughout all of this, I'm reminded of how good we have it and how much worse it could be. And thankful that we have such a good surgeon just an hour and a half away.

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