We're attempting to get a feasible routine going, since there's no such thing as a routine in the hospital, but we have to schedule pretty much everything around Abby's feeds. This can be complicated. I'd like to paint a picture for you of Abby's daily feeding schedule.
6am - start feed
8am - stop feed
9am - meds and start feed
11am - stop feed
12pm - start feed
2pm - stop feed
3pm - meds and start feed
5pm - stop feed
6pm - start feed
8pm - stop feed
9pm - meds and start feed
11pm - stop feed
12am - start feed
2am - stop feed
The idea is that she is being fed every three hours, which is fairly typical for a two-month-old. However, she cannot tolerate large volumes in the half-hour or so it would take other babies to eat, so instead she is fed over two hours, leaving only one hour between feeds. Eventually, the hope is that her tolerance will improve and she will be able to receive her food in less time.
While Abby is on a feed she is connected to the feeding pump, which is on an IV pole. We can move her from room to room, but pretty much anything more than that is quite difficult. Which means that unless absolutely necessary (i.e. medical appointments), Abby (and thusly, one of us) stays at home during her feeds. When she is on one of her one hour breaks, we try to fit in everything that might make her sick while on a feed, like bathtime, tummy time, and sitting in the swing. We are also supposed to try bottle feeding to develop Abby's oral skills. It doesn't leave time for much else.
When we're in the hospital, the nurses set up and stop all of her feeds, which allows us to just attend to Abby during the night. At home we take care of both, and Abby hasn't figured out how to coordinate her many nightly wake-ups with times that the pump is beeping/needs attending to (come on kid, get it together, right?). This means even less sleep than parents would normally get with a two-month-old. Hence, moving Abby into her room, and us taking turns sleeping in there with her. At some point one of us has to get some sleep.
I dealt with Abby's neurosurgery at five weeks fine. I've dealt with her ongoing heart problems and the prospect of impending surgeries fine. I've dealt with nearly two months in the hospital fine. For whatever reason, this feeding thing is where I crack.
I know that compared to what some of our CCHMC friends are going through, this really isn't that dire, but like I said a couple of weeks ago, sometimes we have to admit when things are hard for us - this is hard.
There is also the stress associated with Abby's current feeding tube. What she has now is called an NG (naso-gastric) tube. The tube goes through her nose, down her esophagus, and empties straight into her stomach. This type of tube is not-ideal for many reasons:
1. It can move out of her stomach fairly easily if she vomits (which she does forcefully and frequently) and accidentally end up dumping the food into her esophagus, which is not safe. There is no way for us to know if the tube has moved without an X-Ray unless we figure it out the hard way (a dramatic increase in vomiting).
2. It impedes development and will become a greater issue as she becomes more mobile. She currently has to have her hands covered much of the day to keep her from grabbing and pulling out the tube. This is discouraged by all of her therapists, but...
3. Replacing the NG is a traumatic experience for her that requires multiple people to achieve. Soon I will be home by myself with Abby a lot and I physically cannot drop a new tube on my own.
4. It must be taped to her face. Part of the downside to this is purely aesthetic, but it is also simply not good for her skin. The tape cannot get wet or it starts to peel off, which makes bathing difficult. It also gets disgusting if we don't catch her vomiting in exactly the right way. Replacing the tape is also an ordeal.
5. It may be exacerbating her vomiting and reflux.
So what other options do we have? We can switch to a G-tube (which we'd planned on doing before we had to have our surprise neurosurgery). The G-tube is implanted through her stomach, but can eventually be removed If she grows out of her need for it. The G-tube really only has one downside we can come up with, but unfortunately it may be a big enough one to cancel out all of the pros: it requires surgery and thusly, anesthesia. Cardiac patients, like Abby, are at much higher risk for complications due to anesthesia than the general public. We already know that Abby is going to have to have a number of absolutely necessary surgeries, can we in good conscience put her through another one? It's something we're really struggling with.
While we were still in the hospital I was pretty sure I didn't want to risk getting the G-tube, but now that we're home, I'm leaning more toward thinking that we may need to. I want to do what's best for Abby, and I am having a really hard time figuring out what that is.
The other big decision we need to make is whether or not to move. Moving would put us closer to CCHMC and ensure that one of us could still get home to take care of the dogs if we end up inpatient again. We discovered during this admission that the dogs do not fare well if one of us is not there daily, and it's important to us that they not be forgotten in all of this. Unfortunately, moving would mean distancing ourselves from the great community of friends we have developed up here and would require the stress of, well, moving.
Please join us in praying about these two decisions, as they are weighing heavily on us.
As always, thank you for all of the prayers, help, and support.