Finally Home!

Sorry for the delayed update, we have been busy, busy, busy! Sophia came home finally on December 5th. We are all beyond thrilled to finally be together as a family, and just in time for Christmas. We have been working on getting a schedule together that works for us because our little one still needs quite a bit of medical care. Will has taken to his sister better than expected. He gives her multiple "butterfly" kisses a day, but you have to watch him closely because he'll try to sneak a pinch or two in every one and a while. Sophia is doing wonderfully. We took her to the doctor on Wed and she had already gained over a pound since she left the hospital. This was so great to hear because it made me feel like we were doing a good job! I feel an enormous amount of stress being a nurse and caring for my own child, but everyday gets better. For right now, we are just enjoying our time together and focusing on staying healthy and happy. Thanks to everybody again for everything, you are all part of our happiness!

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!