Growing at Home

We have been at home for more than a week now! (This was one of my personal goals -- to be away from the hospital for at least a week this time.) Lynnea had a doctor's visit on Friday with her regular pediatrician, and today she went to the U of M for an echo cardiogram and check-up with one of her cardiologists. She is growing nicely -- she now weighs 8lbs. 5oz. Her echo cardiogram looked good -- her heart function is still good; the only concern was that the bands that were placed on her pulmonary artery are beginning to tighten a bit, but this was expected to happen as she grows. I don't know if this means that they will have to go in and loosen them before the next stage surgery, or if they will just monitor it closely and leave them alone until she is big enough for the next stage. We should know more next Monday when she goes in for her next visit at the U of M (she goes weekly now for echo cardiograms and visits with cardiologists).

A Smile for Chirstmas

"Today in the city of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you : you will find the baby wrapped in cloths and lying in a manger." Luke 2:11-12

This year we didn't put up our Christmas tree, or any of our other decorations. We didn't send any Christmas cards. We didn't buy any presents. We didn't bake any cookies. Without all of those things, I have had more time to reflect on what Christmas is all about. It's about a baby; a miraculous baby, who grew up to save all of us. It's so easy to forget that in the middle of trying to shop for the perfect gifts, trying to get all of the baking done, etc. Not having the opportunity to do those things this year forced me to focus on the real reason that we have so much to celebrate.

For me, it's about my baby too this year -- what a gift she has been, even though the past two months have been so difficult for all of us. I am amazed at how much she has changed out lives in such a short time, and how much we have been willing to sacrifice for her sake. For Christmas this year, I received one of the best gifts ever -- smiles from both of my little girls. We are thankful that we were able to be together as a family, away from the hospital. That's more than enough to celebrate.

At Home Again!

Lynnea was discharged from the hospital (again) yesterday afternoon. She had a pretty good night here with us, other than her not wanting to go to sleep until 1am, everything was great. It's good to be home, and hopefully this time we will be here for more than just a few days. Tomorrow we will work on transitioning Ashlyn back home with us -- we felt that it would be best to take a day or so to get Lynnea settled in before bringing Ashlyn home (plus there's always that fear that we will have to take Lynnea right back to the hospital, and we try to keep Ashlyn's life as stable as possible). So, we should be a "real family" again for Christmas.

Back in 5A

Lynnea was moved out of the ICU this morning, back into "our" room on the 5A wing (they were nice enough to save it for us, so that we wouldn't have to move all of our belongings). She was awake and alert for quite a while today, and the surgeons gave her the OK to start eating again. She has been doing well with her feedings -- we've started out slowly with small amounts, but she has almost worked her way back up to the volume that the doctors want her to eat in the long run. So far, she's been taking all of her food orally, so we haven't actually had to use her G-tube yet. (Go figure -- we had to put the G-tube in because she wouldn't eat enough orally, and now she wants to eat!) She has not thrown up at all since we started feeding her again, which is very good news. If things continue to go well, I am guessing that we could be home in a few days, but we haven't gotten any official word from the doctors yet on when they will send us home.

Recovering Nicely

Lynnea's surgery went well today, and now she is resting peacefully in the ICU. She will be staying in the ICU overnight, just for observation, and then she will be moved back to the floor tomorrow morning. We are very thankful that there were no complications, and hope that her recovery continues to go smoothly.

Putting in the G-tube

Nothing much has changed with Lynnea in the past few days. The surgery to place her G-tube and fix her esophagus will tentatively be on Wednesday morning at 9:30 am. I will let everyone know if anything changes before then.

Ashlyn's Accomplishment

Not much new news on Lynnea today: it looks like she might have the surgery to place the G-tube and fix her esophagus on Tuesday or Wednesday, but they're still not sure; in an ideal situation, recovery takes 3-5 days after the procedure, so there is still a small chance that we would be able to make it home by Christmas.

Anyway, I thought I should take a moment to recognize a big moment in Ashlyn's life. The other day she decided, completely on her own, to go potty on the toilet. She was at my parents' house (where she has been staying through all of this), and my mom was getting her ready for her bath. She was undressed, and she climbed up on the toilet (and almost fell in), and went potty. Since then, she has been saying "potty chair" and wanting to use it occasionally. I was really impressed with her, but at the same time, this is just another moment that Corey and I have missed out on because we're in the hospital with Lynnea. Hopefully we will all be home soon so that I can give Ashlyn the potty party that she deserves, and maybe we will have a fully toilet trained daughter.

A Moment with Will Smith

Nothing has changed with Lynnea's condition today. We still don't have a date/time for surgery. But. . . while Lynnea and I were sitting around in her hospital room today, Will Smith showed up and spent some time hanging out in the playroom on this unit, so Lynnea and I decided to go and meet him. That was pretty cool. I guess he's in town this weekend promoting Hancock and he decided to stop by the hospital. It's things like this that make sitting here day after day waiting for Lynnea to be well enough to come home bearable. We have a couple of other pictures with him, but this is the only one that was taken on my camera. He also signed a copy of Men In Black for us, which is very cool. Too bad Corey had to work today, so he wasn't able to meet him.

More Surgery

While evaluating Lynnea for the placement of a G-tube, they discovered that she has some pretty significant reflux issues, which are probably contributing to her eating issues. They are planning on doing a procedure to try to correct the problem sometime next week -- hopefully at the same time that they place her G-tube, but I don't know for sure. We don't have a definite date/time for surgery yet, probably because Lynnea still has a nasty cough, and the doctors need her to be as healthy as possible before surgery.

The Next Step

Lynnea continues to eat less than she should. Her doctors are concerned that she is not gaining enough weight, and told us to seriously consider letting them put in a G-tube. This is a feeding tube that goes directly into her stomach. It would be placed surgically, and would stay in at least until her next heart surgery. The advantage to having one placed is that we could take her home with us, but there are a number of risks also associated with it. We have until sometime next week to make a final decision on whether or not we will have one placed. They continue to try to tweak her cocktail of medications, hoping that maybe that will help with her feedings, but if that doesn't work, we don't have many options other than a G-tube. We really hope it doesn't come to that.