After over a month, I finally understand what it means why they say you have to take it day by day. One day, it looks like progress is being made, only to come in the next to find we’ve taken a few steps back. While it’s great that some days stay the same as the day before, it certainly doesn’t make for an exciting blog entry – hence the delay! Plus, as the twins get bigger, the more I’m able to interact with them. So let’s rewind the past couple of weeks and catch everyone up!
First and foremost, both are doing well! Parker has made some huge strides and it looks like we could be talking about going home here soon!! As of February 7th, he weighs 6lbs. 12oz. and measures 18.5″. About a week ago, he was able to have the nose tubes removed, and so far, is doing great! He’s getting the hang of taking a bottle, but still doesn’t quite have the energy to take all of his bottles all the time. Once he manages to take them consistently, and goes for five days with no events, he can bust out of the joint! Basically, that’s it! He’s just eating and growing now. Both the physical and occupational therapists stop by once a week to visit and agree he’s doing well.
Hannah, while doing well, has a few more hurdles to overcome. About two weeks ago, she started to have more and more events due to a combination of complications. Since all babies have high blood pressure in their lungs when they’re born, it usually drops a couple weeks after birth. For Hannah, once the blood pressure dropped, it started causing her to work harder to breathe. She’s always breathed fast, but was at least comfortable and didn’t appear to be working hard to due so. Now she’s breathing fast and having to use alllll of her energy to do so. To help, they put her on Vapotherm – basically humidified air that would go into her nose tubes. It seem to work for a couple of days, only for her to dip back down again. After a chest xray showing extra fluid in the lungs and an echo showing blood now crossing the two ventricles between the holes, they started her on lasix and reduced the amount of formula she received at each feed, but increased her calories. It’s been a roller coaster ride the past couple of weeks trying to find the right combination of lasix and formula. It appeared to be helping at first until she began having random de-sats (drops in her oxygen saturation levels in her blood) that weren’t caused by anything that we could physically see. For example, a lot of times, they’ll have a de-sat while feeding, having some reflux, positional, or trying to go to the bathroom. Hannah wasn’t doing any of these… she was basically trying to sleep. They ordered another x-ray and again, there was more fluid and her heart was even more enlarged than it had been just a few days before. While adjusting her lasix, docs have also added an inhaled steroid to the mix. The steroid is extremely safe since it’s inhaled and goes directly to the body that it’s effecting. If it appears to be working by the end of this week, they’ll keep her on it for another three weeks. Through all of these efforts to help Hannah breathe more effectively, she’s also still needs to gain weight. She’s on the highest calorie formula (it’s basically a milk shake), but with the lasix, it could be tricky.
Of course, the docs are consulting with cardiology through this whole process. Keep in mind, they would like for her to be 11lbs before they could do her corrective surgery. The docs have a few more options to play around with before they would do anything, but we have been informed that there could be a good possibility that she would need a surgery before hand to buy her some time and get some meat on those bones for the other surgery. If that’s the case, Hannah would need a PA Band. It’s band they put on the pulmonary artery to restrict how much blood is going from the heart to the lungs so there’s not too much extra fluid. This of course presents a whole new world of challenges…
Even though we’re at a Riley Hospital, all surgeries are done downtown. Hannah would have to be transported by ambulance and admitted down there. She’ll stay down there to recover and is able to discharge home, just in case there would happen to be any complications, they would be able to handle it. Here’s the tricky part – what about Parker? If he’s still in the NICU at the time she would need the PA Band, he would have to stay behind at IU North since they’re not going to admit him downtown and change his care. If he’s been discharged, downtown, they don’t have private rooms like we’ve been in this whole time, (it’s basically like a regular nursey, only for NICU patients) and he wouldn’t be allowed to come with us when we see Hannah. Apparently, IU North is one of the only NICUs where patients that have been discharged may come back with their parents when they come to visit their other child(ren). I shouldn’t say they don’t have private rooms, they do, but they’re for patients that have been outside of the hospital walls. I can ask the cardiologist if she can have a private room since then we would be able to bring Parker with us, but it’s up to him to make the call.
This of course is a game changer and a whole new set issues… but they haven’t made the official call that she does need a PA Band, so let’s focus and the here and now. As of this past weekend, she had lost a couple of ounces, but as of tonight, she’s gained two nights in a row – big gains, too! She currently weighs in at 4lbs. 9oz. and measures 17.5″. I’m hoping that we’re on an upward trend of gaining weight, thus finding the right combination of lasix with formula. (BTW, she’ll be on lasix until she has the repair surgery).
So what’s the game plan? Ultimately, the goal is to get her home without needing a PA Band. If she does need it, they’re hope is to get her to a point where she would be close to going home anyways. Meaning, gaining weight appropriately, breathing better and taking a bottle. This way after she recovered from the surgery, she wouldn’t have to still conquer these challenges. Regardless if she has the surgery or not, the starting point is the same. Today, they started to ween her off the Vapotherm for a couple of reasons. One, regardless of what happens, she can’t be sent home on Vapotherm. She can potentially be sent home on nose tubes, but I sure hope not! And two, we can’t introduce a bottle while on it as well. If she were to have some events while they are trying to ween her down, that’s when they might consider adjusting her does of lasix and fixing the problem that way. Then of course, she’s got to be able to pace her breathing and slow down, because again, she can’t take a bottle breathing this way. Fingers crossed, she’ll continue to progress!
Phew, ok, I think that’s where we currently stand! Hopefully it won’t be another two+ weeks before I can update everyone else again 🙂
hpgreen 