Monday, December 29, 2008

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).

Friday, December 26, 2008

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.

Sunday, December 21, 2008

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.

Thursday, December 18, 2008

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.

Wednesday, December 17, 2008

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.

Monday, December 15, 2008

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.

Sunday, December 14, 2008

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.

Friday, December 12, 2008

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.

Thursday, December 11, 2008

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.

Tuesday, December 9, 2008

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.

Monday, December 8, 2008

Wardrobe Malfunction

Lynnea is still in the hospital, she is still not eating as much as the doctors would like, and now it sounds like she is probably getting a cold. So, it looks like we'll be here for at least a few more days.
Since I don't have much news as far as her health is concerned, I figured I would share her latest wardrobe malfunction with everyone. See, as far as newborn babies are concerned, clothing is a mysterious and troublesome thing that parents insist on putting on them. During her first week at home with us after she was born, Lynnea had what I would have to call a serious wardrobe malfunction. She was laying in her crib and began to fuss, so I went to see what was wrong. I found her laying there with one hand pulled completely out of the sleeve of her sleeper and it was sticking out of the neck hole hitting her in the face. OK, so I thought at the time that it would be difficult for her to top that wardrobe malfunction, but last night she managed to do so. I woke up in the middle of the night because she was screaming, so I rushed over to her crib to see what was wrong. It was dark, and I was only half awake, so at first when I looked in the crib and couldn't see Lynnea's head, I assumed that she had unwrapped herself from her blanket and pulled a blanket over her head. Upon closer inspection, I realized that she wasn't wrapped in a blanket at all. She was wearing one of those handy sleep sacks that are one-size-fits-most, similar to the one she's wearing in the picture. The mattress of her crib was at an incline to decrease her spitting up. She had managed to pull both her her hands out of her sleeves, and then she had slid down into her sack and had gotten completely lost in it. I quickly unzipped her outfit and helped untangle her from it, and she went back to sleep like nothing was wrong.

Friday, December 5, 2008

Still No IV :-)

Lynnea continues to keep herself hydrated without needing an IV, which is the good news, but she is still spitting up some of her feedings, and the doctors still don't know why she doesn't want to eat on her own. She still has her feeding tube in -- she's needed to have it placed a few times now because she keeps pulling it out (those little fingers of hers just can't resist tugging on that thing in her nose) so, the nurses have decided that she has to keep mittens on her hands at all times to prevent her from pulling it out again. Fortunately, she's pretty tolerant of her mittens, and they have the added benefit of keeping her hands nice and warm.

Wednesday, December 3, 2008

Back in the Hospital

Due to the fact that Lynnea is not eating enough to keep herself hydrated, she is now back in the hospital. They placed a feeding tube again. . . unfortunately, after they fed her through it the first time, she threw up pretty much everything they had given her. For now they are keeping it in, and I think will continue to attempt to feed her through it, but if she continues to throw up, they will probably have to place an IV in order to get her the fluids she needs. I am still hoping that it won't come to that, but I am afraid that it will probably be necessary. At this time, the doctors still have no idea why she decided not to keep eating in the first place.

At Home with Lynnea

We love having Lynnea at home with us, but unfortunately, she is not eating very well, and she is losing weight. She has a doctor's appointment this afternoon, so we'll see what he has to say about it. She also goes to the U of M on Friday for a echocardiogram and a check-up with her cardiologist. Hopefully they will have suggestions on getting her to eat more without bringing her back to the hospital to have a feeding tube placed again.