Keep on the Sunny Side

Sophia’s smile is back! We don’t know if it is the increased dose of her motility drug or the nightly pump feedings or neither, but she’s her smiling self again! I first noticed it when I woke her after the very first night when I wasn’t home to tuck her in to bed (I had an evening presentation in Albert Lea). She was all smiles that morning (she usually isn’t really a morning person). Ever since she has seemed much happier. It’s so great to have her back!

As you’ve maybe already read, we started the week out at the cardiologist. The holes in Sophia’s heart were unchanged while the pressure differential had increased some. She said we could expect to have surgery sometime within the first year (towards the end of the year wouldn’t be ideal with the new baby, but of course we want Sophia to be as big as possible). I left feeling less hopeful that there would be a way to avoid open heart surgery at some point. She did tell us that she’d present Sophia at conference on Friday to make sure they were all still on board with waiting to operate. (we learned on Friday that they weren’t).

Sophia had also appeared to have lost a couple of ounces over the previous 8 days. We met with the nutritionist to figure out how to increase her feeds. We had anticipated this since she’s been on the same intake for several months and has no way to really tell us she needs more. She is also more active and probably burning more calories. The nutritionist also recommended that we try using the same formula we’d been using to fortify the breast milk as our supplemental formula. It is apparently better to use the more traditional formulas if at all possible (instead of the Ellecare which is usually given to babies with severe digestive issues since it is the most broken down and what we had first been prescribed). Since we didn’t feel comfortable increasing the amount of food she was getting at each feeding (with all of her spitting up), we decided we’d better add her 3AM feeding back in. So, for a couple of nights, we got up an additional time to feed her while she slept. It’s not so bad since I get up to pump anyway, but it adds another 45 minutes to the awake time. We finally thought about just feeding her with the pump while she slept. That way she’d get a small amount at a time (so she wouldn’t wake up spitting up after each feeding) and we could sleep more, too. The nutritionist also suggested that we actually load her up on food overnight so we could reduce the amount during the day to hopefully help with her spitting up. After all that, we learned that the scale had been off on Monday–either that or she “gained” 1/2 pound in two days because by Wednesday she was up to 12#s 11oz! In any case, it is probably good for her to have more food, and we are relieved that she wasn’t actually losing weight.

Because most of our problems seem to stem from Sophia’s GI issues we ended up at the GI doc on Wednesday after our cardiologist had called him Monday and said–“it’s your organ, not mine” forcing him into seeing us. I think we also scared her when we were telling her I’d cut out chocolate because we thought it was giving Sophia gas. She must have misheard us and apparently thought we’d been feeding Sophia chocolate, because she seemed really concerned and asked quizzically, “Tell me about this chocolate…”

It was actually good to meet with the GI doc again (since we’d only been talking with his nurses for a few weeks now). He said Sophia is really doing well and tried to give us some perspective by convincing us that things could be much worse. He also warned us that she’ll really regress after surgery–maybe even needing all her feeds through the pump for up to 6 months. He explained that it made sense that we couldn’t really find any patterns in her GI issues because her Nissen was healing, making things unpredictable. That made me feel better after all that journaling I had done provided no real conclusions.

John and I also visited our dentist on Wednesday and learned that he has experience with kids with Down Syndrome, and he agreed to take Sophia on as a patient. So we lucked out again lining up yet another excellent care provider for Sophia. Dental visits are a ways off, but apparently she may have some difficult dental issues to deal with. The first one we expect to see is that her teeth probably won’t come in until she is about a year (right when her brother/sister arrives!) and she’ll probably get them in a different order than most kids. Should be some interesting pictures!

On Saturday, Sophia’s cousin Jamie came over with her Mom so John could do her senior portrait. I think Sophia was relieved that for once she didn’t have to be the model! She spent most of the time sleeping in her Bjorn while we traipsed through the neighborhood with Jamie dragging all of John’s equipment in the baby stroller. Since both Jamie and Jane have a great laugh, I thought maybe they could teach Sophia to giggle, but I guess she’s not quite ready.

Later that day Sophia got to try her first bite of rice cereal! Her GI doc said we should go ahead and introduce her to other food while she is healthy so she won’t have such a learning curve later on after surgery. She obligingly took a couple of spoonfuls but really wasn’t all that interested. Of course I got more in her nose and hair than in her mouth with her squirming around on my lap! However, I managed to keep her clean enough for Grandma’s Halloween card photo shoot. (My mom brought a bunch of pumpkins from her garden, and the shots turned out great!) We won’t be able to take Sophia out trick-or-treating (even though Papa thinks it would be a good way to load up on candy), so I didn’t really want to buy a costume for her, but thought she could actually get some wear out of the pumpkin pajamas I found.

Poor Sophia, she fell down a couple of times during the shoot before I could catch her. The worst time was when she was leaning against Mukwa and Mukwa decided to get up, sending Sophia face forward into the wet leaves! She was a very good sport about it all, but I get the feeling that it motivated her to work harder on her sitting today since she has been doing so well. She’s also managed to overcome her head lag–her head now comes with her body when you pull her up by her arms! And, her hands discovered her feet this week… and, she suddenly has eyelashes you can see! What an adventure this all is. I’m having my panicky moments about her upcoming surgery, but we’re trying to focus on enjoying this pre-surgery time, free of cords, wires, and hospital hubbub. Off to get ready for Grandma Jackie’s arrival on Tuesday…

Comments

  1. Teresa Boatman says:

    John and Deb

    I would be happy to provide a couple hours babysitting, if that is feasible, even paired with someone who has experience with Sophia, so you can get some rest and relaxation together. Lots of prayers to you always even if you don’t hear from me. Such excitement with a new baby on the way. Let me know what you need. Food is always easy for me to provide too! I keep telling everyone when I cook I am practicing for my second career.