Oh, what a wonderful moment! I got to hold my baby yesterday, after 2 weeks and 6 days, I actually got to hold my sweet Ava. And even though she’s not used to being held, she didn’t mind, snuggled right down and went right to sleep.
And even though it might look like I’m nursing her, I’m not… to bad really. The little monkey does have chylothorax and so is on special formula which she is getting right now through her NG feeding tube. I wish this wasn’t the case, but with everything else going on, I don’t have the emotional energy to worry about. Small blessings I guess! 🙂
But holding her was so wonderful, even though we still had to juggle cords and tubes. But it’s possible to hold her now because she’s off the ventilator! They removed Ava’s ventilator Christmas Day and so we got to see her face with just her feeding tube in and the kids came and she was awake and it was nice, we were actually all together on Christmas Day – even if it was just for ten minutes.
Terrible pictures I know… we forgot our good camera and the kids were crazy, but it was nice we got a pic of them together for Christmas.
So now moving forward, Ava is off the ventilator but still has to spend quite a bit of time on CPAP, which stands for Continuous Positive Airway pressure, which helps keep everything in her lungs open. So although it’s another tube, it’s removable and she’s spending time off it each day. They also removed a line that was in her neck and she’s losing one of her drain tubes today. It’s so exciting to see these things being removed, and seeing her get back to looking more like a normal baby.
And on the Sarah end of things, we are doing well. She is taking her insulin like a champ and we will spend more time tomorrow at the diabetes clinic for more training. Now that we’ve gotten over the first hump, it’s time to learn more about it.
So that’s where we are at. And we are actually feeling calm these days which is a nice feeling. The other night Jason and I were really stressed, but then realized that we hadn’t spent any time together, (one of us is usually here at the hospital while the other is taking care of the kids), and so much has been going on with Sarah’s diagnosis and wanting to be with Ava and then adding in Christmas – so our stress levels were super high. But we know now that we need to take time each day to talk with each other and pray together and sleep is always good too.
It’s still a day-by-day journey here, but praise to God, we are getting through by His mercy and grace. And every day is one day closer to going home!! I can’t wait!