A New Normal
With Joseph being back at work and a lot busier than he was before, I (Brianna) thought I'd take the time to post an update. I know you have all gotten used to Joseph and his writing style, but we're probably going to tag team the updates from here on out. His posts are going to be a tough act to follow... so bear with me.
Things have settled down and we've begun to feel like we are living a new kind of normal. We have gotten pretty good at packing everything but the kitchen sink when we go out (you'd be surprised by how quickly we can load up and go!). I've even gotten comfortable taking Shirley out alone, on a walk, to coffee or lunch with a friend, things are just getting a bit easier. We've gotten used to strangers asking questions about her NG tube. Although these questions can be repetitive, they have been the start of several surprisingly meaningful conversations with people we've never met before.
There are moments I find myself forgetting about Shirley's heart condition entirely, which is something I did not think possible just a short time ago.
We are having a difficult time waking up for her middle-of-the-night feeds. Shirley sleeps through them, so we don't have a crying baby to wake us up. We have accidentally slept through them right along with her more times than I'd like to admit. I usually wake up frantically pawing around in the dark for my phone, only to find that it's right next to me and that I must have silenced my alarm several times in my sleep. Then a wave of guilty thoughts rushes into my mind "she's probably starving!" "Do I not care about her enough to wake up for her?!" Although powerful in the moment, these thoughts are fleeting and usually do not last until the morning.
Shirley has not been improving with oral feeds. For a while she was very interested in breastfeeding, but she has recently decided that she doesn't like it so much anymore. The fact that my milk supply has been rapidly dropping ever since her discharge from the hospital is probably a contributing factor. Bottle feeding is slow going as we work with the feeding therapist to find the right flow rate and nipple shape for Shirley's comfort. We want feeding to be a positive experience for her, so we can only push her so far before she gets upset or overtired. We give her as much as she will tolerate by bottle, and then feed the remaining amount through her NG tube.
Shirley doesn't have as many appointments as she had the first several weeks after her discharge. She has in-home physical therapy and feeding therapy appointments that rotate every Monday. The therapists are wonderful! They have been so encouraging to me and I can tell that they truly care about Shirley.
We had a cardiology appointment last week with Dr. Penalver at the Tacoma SCH cardiology clinic. I had seen him once before when I was about 30 weeks pregnant, so this was the first time he officially met Shirley. The appointment went well overall; Shirley was a champ, smiling at everyone! Although she is still quite small, she is healthy and gaining weight (11lbs now!). She had both an EKG and an Echocardiogram done; both had positive results. Her heart hasn't changed much, and any slight changes have been for the better.
Because of Shirley's difficulties with oral feeding, both Dr. Penalver and her dietitian (Tran) mentioned the possibility of getting a G tube placed instead of her NG tube. A G tube requires a small surgery to place a tube from the outside of Shirley's abdomen directly into her stomach. It has a small button that can be opened for feedings and closed when not in use.
Initially, this would seem like a step backward, but it really isn't. There are several issues that could be resolved by switching the NG tube out for a G tube. First, the NG tube holds Shirley's esophageal sphincter open, which causes reflux and throat irritation; both make it more difficult and uncomfortable for her to feed orally. Second, the NG tube also causes Shirley to have a heightened gag sensitivity, since the tube is hovering at the back of her throat; this also makes oral feeding more difficult. Third, the adhesive used to keep the tube in place on Shirley's face really irritates her skin. It is an obvious discomfort for her, and the older she gets, the better she is at ripping it off and pulling her tube out. For the past several weeks we have considered ourselves lucky if we could keep a tube in for more than 3 days. Although we don't like the idea of Shirley going through another operation (albeit a very minor one), the NG tube has been such a headache for all three of us that the idea of a G tube is beginning to appear like a breath of fresh air. Also, selfishly, I would like to see Shirley's beautiful face without that pesky yellow tube getting in the way!
We have not made a definitive decision to move forward with the G tube yet. We're going to see if her oral feeding improves over the next couple weeks and then make a decision.
Meds and Labs
The other positive thing that came from her cardiology appointment was that she was taken off digoxin. She is now only taking three medications multiple times a day. Digoxin was never meant to be a longterm treatment for Shirley's heart failure and because it is by far the most dangerous drug with the least benefit, we were all itching to be done with it. If you don't remember digoxin is the drug synthesized from foxglove. Shirley also had her blood drawn last week and this revealed even more positive news. If you recall a post a while back about BNP you will be glad to hear that Shirley's BNP levels are at 63. Thats down from about 3500 at its peak in the hospital. It is still high, relative to the average child, but its not that bad for a child with heart failure! It also confirms that she really didn't need to be on digoxin anymore and that her current meds are doing the job just fine.
Shirley is still the happy, chubby, sweet baby she's always been. See pictures below: