Momentum

After days of struggling, the doctor has finally agreed to run some extra tests on Jackson to try to find out why he's now refusing to eat. A week ago, he'd wake up hungry and down a bottle. Granted, he'd have few desats into the 70s, but no one seemed to think that was a problem. Over the weekend, Jackson stopped taking his bottles and almost outright refused to swallow. Starting two days ago, he would wake up hungry, act like he wanted the bottle, but once you got it in his mouth he wouldn't suck and swallow. As soon as you'd give up, he'd act alert again and suck like crazy on his fingers or paci. Yesterday, PT/OT came to evaluate him during the feedings. At 11am, he just looked really uncomfortable and unhappy during the feed. PT/OT recommended to the doctor to try thickening his feeds. So, at 5pm, they tried that and he did a little better (took half a bottle) but still looked uncomfortable about halfway through the feed. So, they called the doctor and convinced them to do a swallow study. Hopefully they'll do the test today, but if not tomorrow.
A swallow study is a test where they feed Jackson and then watch on x-ray how he swallows. They are looking to see if the milk is going down the wrong pipe or if there is something else wrong. It can also help determine if he needs thickening and if so, how much.
We (the nurses, Ryan, and I) also have two more concerns about Jackson. The first is that he doesn't cry. Ever. I have never once actually heard Jackson cry like a normal baby. He never cries on his own, and when I flicked his foot (to make him breathe...I'm not mean) he let out one strange sounding whimper but nothing more. Sometimes he lookes like he wants to cry, but nothing comes out. Then, he resorts to desating and grunting to show his displeasure. Early on, nurses kept telling me he'd cry when he was off the vent, he'd cry when he was older, he doesn't have anything to cry about... but now that he's 37 1/2 weeks corrected, we are beginning to get concerned that maybe there is some swelling in his vocal cords or something like that. The second thing we are concerned about is the noises he makes when he breathes. It sounds like he's gasping for breath or something like that. I've heard people use the word "stridor" but when I asked the doctor about it a week or so ago, she said that wasn't it. I don't know...but I don't think he's supposed to sound like that when he breathes.

So, overall, today is a day where we will hopefully find out some new information, make some changes for Jackson, and regain some more momentum to help him be ready to come home.

Stats:
Weight: 5 pounds 11.1 ounces
Respiratory: Oxygen tank. Nasal cannula. 1/64 liter normally. 1/32 liter during feeds. Some desat into 80s, but overall doing much better. (do we really consider him dropping to 84 or 83 a desat??)
Feeds: 4 PO feeds per day. 11am: 17cc. 5 pm: 24 cc. 11pm: 30 cc. 5am: skipped PO feed to let him rest for swallow study.

Goals:
1. Keep on gaining weight.
2. Figure out what's wrong with Jackson's feeding, breathing, and crying.
3. Get back to doing well on bottle feeding.
4. Increase good stimulation now that he's old enough to enjoy toys, a playmat, and bouncer!
5. Come home soon!

With love,
Anna