A quick update on sweet baby Gus before I collapse with exhaustion . . .
On Monday Gus had another swallow study to check out how his esophagus was healing. There were no leaks, which was excellent, fantastic news. I was in Gus’s room when Dr. C came by to tell me the results, and things moved very quickly at that point. I was washing my hands, and at the exact moment I turned around I heard this horrible sound and saw Dr. C pulling out Gus’s chest tube. YIKES. I had no idea when he said the chest tube could come out that he meant right that second. I would have gone elsewhere if I had known that was about to happen, because it was creepy.
Gus was superbaby though, and only cried for a few seconds. Dr. C and the nurse put on a dressing, then went out to meet with the neonatologist and nurse practitioner to discuss a feeding plan. Less than 30 minutes later, the nurse was holding Gus and getting ready to give him his first bottle.
Now, I will admit I was very upset that they wouldn’t let me feed him the first time. It was my milk, and my child, and I thought I should have gotten to do that. It was bad enough that they said absolutely no breastfeeding until we can establish that he can swallow, but to not even let me feed him made me sad. Logically, I know they wanted the nurse to feed him because he could have started easily choking and gagging and she would need to be able to react fast. But it was still hard.
Gus took 10ccs of milk in about 5 minutes, and I was the happiest I’d been since his birth. It really hit me at that moment that he was going to be okay, that his esophagus really was fixed (well, sort of, more on that later), and that he could eat. Everyone was amazed by how well he did with his first feeding. I could finally start to hope that he’d be home soon.
Well, as with everything in the NICU, the excitement was short-lived. The next day I got to feed him, and the nurse was concerned because he was starting to sound congested. He was also having some issues with reflux and gas, which was expected, so they started him on mylicon and Mylanta. It is very likely that he’ll be on some prescription drugs for these issues at some point, but for now, the OTC meds are working.
Feeding him was cool, but still a little heartbreaking for me. It is so hard for me to have him in my arms and not be able to breastfeed him. He seems like a perfectly normal baby, but I have to remember that he isn’t perfectly normal and bottle feeding is what he needs.
Sigh.
On Wednesday, when I got to the NICU, the nurse tells me that Gus is going for another swallow study. Apparently his congestion was getting worse and they were afraid he was aspirating liquid into his lungs. The swallow study would allow the speech/occupational therapists to watch him eating via xray to determine what was going on when he swallowed.
The study confirmed that he was aspirating the milk. Not only that, he was silently aspirating it, meaning he didn’t cough or choke every time it happened. That is bad, because normally when you aspirate (you know, when something goes down the wrong way) you cough or choke the liquid back up, so it doesn’t go in your lungs. Dr. Famous J says that little flap in your throat is called epiglotus. I don’t know if that is true, but whatever that thing is, it doesn’t work very well for Gus yet. He never swallowed in the womb, then he was knocked out for weeks, so he has some catching up to do. With maturity, he’ll learn what to do if liquid goes down the wrong way. But rather than take the chance of letting this continue to happen, which could lead to all kinds of bad things – like pneumonia or scarring of the lung tissues – he got pulled off bottle feedings for 2 weeks.
Super sigh.
In the meantime, the nurses are feeding him through his g-tube, and we’re working on getting him entirely off morphine and his IV nutrition. That is going very well, and by the end of next week he should be up to full feeds and probably off the pain meds. The speech therapists and nurses will be doing some exercises with him every day to try to help him get that suck/swallow reflex down, and hopefully we’ll have some good news from the next swallow study on the 10th.
I did talk to the neonatologist today about a going home timeline. He said that learning to eat will be a lengthy process for Gus, and they aren’t going to keep him in the hospital indefinitely. As long as we get him off the IV nutrition, up to full feeds via his g-tube, off the morphine, and able to get 1-2 bottle feedings a day, he can go home. His guess was another 2-3 weeks, but definitely not months. So we can be cautiously optimistic that he’ll be home in the near future.
After he gets home, there will still be a lot of work and a lot therapy that needs to be done. Remember when I said his esophagus is fixed? Well, it is attached and healed and not leaking. It is, however, very narrow. Over the next several months, possibly years, Gus will have to get outpatient procedures called dilitations. In simple terms, it is a series of procedures where a catheter tube will go down the esophagus and be expanded to slowly start stretching out his esophagus wider. It’s possible that he may need this dilitations periodically throughout his life, but at this point it is too soon to tell. It is done under general anesthesia, and isn’t supposed to be very painful, just kind of annoying.
In addition to those procedures, we’re going to be working with speech and occupational therapists for quite awhile. Gus will come home with a g-tube and a pump, so while he’s working his way up to eating entirely from bottles, I will feed him milk through a pump.
Breastfeeding? I can pretty much forget it. The speech therapists have said they will work with me on it, but if we’re lucky I might be able to put him to breast once or twice a day. MAYBE. They are telling me without coming out and saying it not to get my hopes up. It just isn’t realistic to think that its going to happen. I don’t even want to get into how sad it makes me to think that trying to feed him via breast could cause him serious issues with swallowing and eating. I know technically I AM breastfeeding – once he is off the IV nutrition, he will be a 100% breastmilk baby. But it isn’t the same, and I am so disappointed that Gus doesn’t get to have the same kind of experience that Charlie did. I know I’m lucky that he is able to eat at all, and it doesn’t matter how he gets the food. But it still hurts.
Focusing on the positives, however, is that Gus is thriving, and gaining weight, and hitting developmental milestones despite all of his issues. He has great head control, follows objects with his eyes and makes eye contact, smiles (he is a big flirt) and is *this close* to cooing at us. It’s pretty incredible that he is so responsive and expressive. He is so popular among the staff, in fact, that one of his nurses had to ban everyone from his room for a day because he was getting no sleep. They also like to take him on field trips – iv pole and all – around to visit with the rest of the unit. He gets bored in his crummy old room!
I feel like I’m neglecting Charlie on the blog, but he’s doing great. He is a well-adjusted, happy, sometimes whiny toddler. He’s much more active than verbal, but in the past few weeks he’s really started to chatter more. It doesn’t make any sense at all, but he thinks he’s saying something very important. I’m fascinated by how many new skills he’s learned, but I don’t know how he’s learned them. All of the sudden, I can tell him to do something – like throw his socks in the laundry basket – and he does it. And then he brushes his hands together to show me he’s done. He’s very good at following directions and “helping.” He also loves music and dancing, and climbing on things. He is such a joy to us, and I love him to pieces.
J and I are kind of running out of energy, but we’re trying hard to keep it all together with a good attitude. I can’t wait for the day when we can spend an evening together with both of our kids, and Toby, and not have to drive to the hospital. Soon, hopefully!
Oh, and my Project 365 . . . I lasted 4 days longer than I predicted! I don’t know what I was thinking, trying to start a project like that in the midst of all we’ve got going on. Maybe next year!
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