Another Curveball

So, Sophia was supposed to come home on Tuesday. After cleaning like crazy, detailing the car, and bathing the house in Lysol, she got another temperature on Tuesday morning. Such a bummer! Turns out she has what is called aspiration pneumonia. They think that she aspirated a small amount of her tube feedings into her lungs causing pneumonia. They started her on antibiotics right away and she hasn't had a temperature since. Before all of this she was doing really well, she was even taking in a little bit of breast milk by mouth. We have been working with OT to teach Sophia how to eat properly so that eventually she can not be fed through her G tube. It's a lot more work than I ever expected! Because she still has a bad heart, she gets worn out so quickly and it's really hard for her to breathe, suck, and swallow all at the same time. A majority of her food still needs to be Monogen, so we will have her on continuous tube feedings over night from 8-8 and then she gets three bolus feeds during the day. We try to give her a little breast milk by mouth and then whatever volume she still needs is supplemented with more Monogen. We are now just trying to get her back on track and hopefully after her antibiotics finish she can come home. We are hoping as soon as Tuesday!

We're moving on up! Sophia is out of the ICU and in a step-down unit, one step closer to coming home. Right now she is getting a brain MRI so they can try to determine the cause of her brain bleeding, which is important to know especially for the next heart surgery. The NP told me today that they want her to get a cardiac cath in 2 months to assess when the next surgery will be. She is not growing into the pulmonary band like they wated her to, so it may be sooner rather than later. Besides that, Sophia is doing wonderfully. We are trying to work on her feeding and transitioning her into oral feeds. The NP even mentioned maybe trying some breast milk soon, which would be wonderful. She has been so responsive and playful recently which is wonderful to see. It's amazing to me how she can still grow and thrive after everything that she has been through. Right now I am just hoping that the MRI results are ok and that will be one less thing to worry about. More pictures soon!

Cautiously Optimistic

So they are holding off on the neurosurgery! All of the doctors had a meeting and decided that she was stable enough to hold off on the shunt. I haven't gotten the full story first hand because Mike has been down with Sophia the past few days, but from what he says they are going to keep following her and see what happens. This of course means that we may be able to bring her home sooner rather than later. Having her at home is such an exciting and scary prospect. We have gotten so used to being in the ICU with monitors, nurses, and doctors being right there that being away from that is going to be somewhat frightening. But being all together in the same room with both of our children makes my heart want to burst! We will learn more in the next few days as to what the next step is, but this is wonderful news! Thanks again to everyone for your continued support. We love you all!

Sorry everyone for the late update! Sophia did not have her surgery on Friday, they wanted to wait and give her a 7 day course of antibiotics. She tested positive for rotavirus which is basically like a bad stomach bug. She did spike another temp yesterday, but besides that she seems to be feeling much better. She is tentatively scheduled for Wednesday. She will get another head ultrasound and a brain MRI on Monday and they will make their final decision (we've heard that one before). For now, we are just enjoying our time with the little one. She is becoming so much more playful and interactive. I have also started "Baby Bootcamp" with her. It sounds a whole lot worse than it actually is! The Occupational Therapist just gave us some suggestions on things to work on, like different positioning, bringing her hands to her mouth (which she sometimes does on her own), stuff like that. I have also been trying to give her tummy time while I can, which she pretty much hates! Everything that they are doing for her right now I could do at home, so if she doesn't need the shunt, home may be on the horizon for her. I'm not getting my hopes up, but I do keep it in the back of my mind!

So, Sophia spiked a temperature again. Of course this means that her surgery will be delayed. The neurosurgeons came in this morning and told Mike that she would definitely need the surgery and said that they would try to do it on Friday. The pediatric surgeons who did her last surgery will be there to help guide the shunt into the peritoneal space since she just recently was operated on around that area. I think she is feeling pretty crappy right now. She is really sleepy and is having lots of diarrhea. I just really hope that it is nothing serious. With everything that is going around and with how susceptible she is, I am scared to death that she will catch something bad. They are running lots of tests to see what the source of the fever is, so we will see. Just keep your fingers crossed that she will bounce back from this and they will be able to operate on Friday.

Let's see if I can give a quick update before my cab comes! Sophia is slated for neurosurgery on Tuesday, but they won't know if she really needs it until Monday. She is kind of teetering on the edge where her brain is swelling enough to cause concern, but not enough to do anything about it yet. The surgeons say that it is much easier than the other surgeries she has had. I'm thinking brain surgery would be harder, but apparently not. Of course I don't want her to have another surgery, but part of me just wants to get it done if it's going to be a problem in the future. The recovery time is supposed to be much quicker.
Sophia passed her swallow study to make sure she could swallow without aspirating, but is having problems figuring out how to breath with a full belly, so is still being fed through her G tube. They have to give her this nasty tasting stuff called Monogen they has pre-digested fat in it, so maybe it's better that she can't taste it! Besides that, she is starting to find her fingers which is really cute. She puts her hands together and then puts them in her mouth. I can't believe that she is almost two months old already. I feel like she is turning into a real baby!

After a couple of set backs, Sophia is on track again. They tried to feed her through her G tube a few days ago and had to stop it soon after because her tube was leaking. They think that it just takes her longer to heal (surprise, surprise) and they are going to try again tomorrow. Keep your fingers crossed because I think that the small amount of food she did get really helped her. She also spiked another temp and collapsed her left lung. All of which has been remedied and she is back on the upswing. The doctors where going to try to send her out of the ICU before all of this happened, so we'll see what the next few days bring.

Will got to touch Sophia for the first time and in true big brother fashion, poked her eye and tried to steal her bink! Thankfully, she didn't seem to mind it all that much. We had a great night trick-o-treating with the Goddens, but it was bittersweet because we had one person missing. We are just hope hope hoping that the next few weeks go well and we can bring her home. I don't really know what the next step is, but I'm sure it will be exciting!