15 Months Old

Lynnea is now 15 months old! She continues to have a difficult time sleeping through the night -- she sleeps for an hour or two at a time, then wakes up wanting Mommy. She is doing a little better with eating; she will now semi-willingly eat a few bites of baby food when we offer her the kinds that she likes. She likes apricots, peaches, blueberry applesauce, and apple strawberry banana.

Two Busy Little Girls

Ashlyn and Lynnea have enjoyed their week at home together. Dress-up has been the preferred activity this week. They both enjoy dressing up as a pirate, and Ashlyn enjoys dressing up as "Builder Ashlyn." At one point, Ashlyn couldn't decide what she wanted to be, so she dressed up as "Builder Pirate Ashlyn." It was very funny. I guess she was working on building her pirate ship and decided that she should wear her hard hat over her pirate hat. Safety first, I guess. Both girls have also enjoyed playing video games on the Wii this week. Ashlyn tries very hard to perfect her Yoga poses, and Lynnea is just really happy when we let her sit on the Wii balance board and hold a remote.

Going Home

Lynnea has had a busy morning. First, they woke her up early (6:30am) to do a blood draw, and then by 7:30 we had made it down to X-ray for a chest X-ray. Lynnea is doing fine, and will be going home later today, these things were all part of her pre-op exam -- Dr. St. Louis made sure that they were all done today before we were sent home so that she doesn't have to come down to the U for another clinic visit before surgery. He scheduled her heart surgery for Tuesday, Feb. 2, at 8:40am. I guess they just weren't able to fit her in next week, so it will be the week after (which actually works out better for Corey and me, so it's fine). After her busy morning, she has finally decided to take a nap while we wait for our discharge medications to be filled, and for Corey to get off from work so that he can give us a ride home.

Surgery Done

Lynnea is done with her surgery. She is in the PICU demanding water and being grumpy whenever the nurses come near her...so basically she's almost back to her old self. The plan for now is to keep her, probably in the PICU, overnight, and we'll see from there.

A Change in Plans

Lynnea's ear still looked like it might be infected, so, instead of having heart surgery today, she is having tubes put in her ears, her adenoids removed, and a bronchoscopy done to get a good look at her lungs. Her heart surgery will be rescheduled for sometime either next week or the week after. She will spend tonight in the hospital, with the possibility of going home tomorrow.

Lynnea's 6th Heart Surgery

Tomorrow morning Lynnea will have her sixth heart surgery (assuming nothing changes between now and then...). Her surgery is scheduled for 7am, which means that we need to have her at the hospital by 5:30am. I talked to Dr. St. Louis a little bit when he called on Saturday about what he's planning on doing during this surgery; he was able to tell me about the things that he plans on doing for certain, and explained that there are some things that he won't decide on doing until he actually has a chance to see for himself what things look like in her heart right now.

Here is a diagram of Lynnea's current heart anatomy (or pretty close anyway). Red: Aorta (carries blood from her heart out to the rest of her body). Blue: Pulmonary Artery (carries blood from her heart to her lungs). Purple: B-T shunt (allows blood to flow from her aorta to her pulmonary artery). Green: Left Main stem Bronchus (carries air to her lungs). Orange: Left Pulmonary Vein (carries blood from her lungs to her heart).

During this procedure, Dr. St. Louis plans on taking out Lynnea's B-T shunt and replacing it with a bigger one because the one she has is too small to allow adequate blood flow to her lungs. He also plans on moving her pulmonary artery away from her left main stem bronchus to hopefully improve air flow through her bronchus into her left lung. There are a few spots on her aorta that might be narrow, that he may consider repairing while he's in there, but he won't know until he gets to look at it. He still feels that it is probably not as narrow as it appears to be on her echocardiograms, and believes that it is probably not something that he can do anything about at this time, but it never hurts to look.

I don't know exactly how long we should expect the surgery to take because a lot of it depends on whether or not Dr. St. Louis chooses to do any aortic arch reconstruction.

Full of Smiles

Lynnea continues to enjoy her time at home as we wait for her next surgery. She seems to be over her ear infection, and has been in a great mood the past few days. She thinks everything is funny lately, and it's fun to see her emerging sense of humor. She also continues to think that the best toys are the ones that Ashlyn happens to be playing with at the moment (and, of course, this feeling goes both ways -- Ashlyn regularly takes toys out of Lynnea's hands as well). We're trying to convince both girls that sharing toys is a good thing, but sometimes it's challenging. We've found that sometimes it's best to compromise and find activities that they can both do without fighting. Both girls have decided that they enjoy playing with Play-Doh, so we sit them at opposite ends of the table, give them each their own color dough and let them play "together" as long as they want. Lynnea has also become more vocal over the past week and has begun to make some more sounds. She has now added "Bbbrrr," and "BaBa" to her regular sounds, and will sign "Please" when she wants to go in her bouncy chair. She also now smacks her lips together when she wants some Chapstick, and shakes her finger at us to indicate "No, no, no." It's fun to see her communicate with us, though she's beginning to get a bit demanding at times.

Surgery Date Change Again

Dr. St. Louis called this afternoon to point out that, because Monday is a holiday, the hospital will be short staffed. He doesn't feel very comfortable doing Lynnea's surgery knowing that, if she has a rough time, the PICU will not be staffed to handle it. So, he moved her surgery to Thursday, Jan. 21. He couldn't give me an exact time, but he is hoping to do her as the first case on Thursday morning. He also said that, because she is just getting over an ear infection, it would be better to do it on Thursday than on Monday.

Surgery Re-scheduled

Lynnea will not be having surgery tomorrow. It has been re-scheduled for Monday, Jan. 18, at 7am.

Surgery Date?

Lynnea tolerated her pre-op exam as well as can be expected (much screaming ensued during the chest X-ray, blood draw, and physical examination, but she managed to sleep through most of her echocardiogram, so I guess it was a good day). Dr. St. Louis was not available to do her exam, so his new partner, Dr. Bryant, saw us instead. It turns out that Lynnea has an ear infection, which was not really a surprise (our nurse, Michelle, had called both our pediatrician and the cardiology team about this last Monday, but our pediatrician was out of town, and apparently the message was never passed on to anyone of importance on the cardiology team). Also, Lynnea still has a runny nose and signs of a cold. So, Bryant started her on a course of Amoxicillan, and said that he would talk to St. Louis about the surgery date. Bryant wasn't sure whether St. Louis would want to push the surgery date back to Jan. 19 instead of doing it on Jan. 12. We were supposed to be notified one way or another after they decided, but no one bothered to call us about it yesterday. We called and left messages with St. Louis' office, but still haven't heard from them.

Pre-Op Exam Tomorrow

Tomorrow Lynnea has a pre-op exam with Dr. St. Louis. She has had a cold over the past few days, so there is a chance that they will have to re-schedule her surgery. They will make that decision tomorrow. Otherwise, she has been doing well -- happy, playful, and trying desperately to say "uh-oh." It still comes out just as "uh" most of the time, but sometimes she can manage to say "uh-uh." We'll keep working on it.