Decorating for Christmas

Today we put up our Christmas tree and decorated for Christmas. This was kind of exciting because last year we were in the hospital most of the month of December (Dec. 3-20) so we didn't get a chance to decorate. Ashlyn enjoyed putting ornaments on the tree -- she had a system: she tried to always match the color of the ornament with a colored light on the tree. It was funny to watch because she was so serious about it. Lynnea thought the Christmas tree was pretty great. She laughed and laughed when she saw me putting a tree up in her house. She has a fascination with trees in general, so having one in her house is pretty exciting. The only issue we had with all of this decorating was trying to convince Ashlyn that, once we were done hanging the ornaments on the tree, they needed to stay on the tree, they aren't for her to take off and play with. She's having a tough time with the concept, but I'm sure she'll figure it out eventually.

Happy Thanksgiving!

We have many things to be thankful for this year. I am especially thankful that this year Lynnea was not in the hospital for Thanksgiving and we were able to celebrate it together as a family. I am thankful for my entire family, especially my two beautiful, amazing little girls. I am also incredibly thankful that Corey finally found a new job. As a family, we are all very thankful for everyone that has supported us through all of the challenges this past year, and continue to support us through the challenges that are ahead.

Mundane Cardiology Visit

Lynnea had another cardiology appointment this morning. According to Dr. Gruenstein, her echo today looked OK. For now the plan is to wait a couple more weeks, then do another heart catherization to see if her pulmonary veins are continuing to close, or if they are finally beginning to improve; from there we will plan the next surgery...for now the plan is to hopefully put it off until sometime after Christmas.

Celebrating Lynnea's Baptism

A little over a year ago, on November 7, 2008, we brought Lynnea to the Emergency Room at the hospital in Princeton, and it quickly became apparent that the belief was that she would not live through the night. At that time, we chose to have her baptised in the hospital. Even though baptism is always a special event that is worth celebrating, that night the celebration of her baptism was the farthest thing from our minds as we watched her struggle to stay alive. Today we were able to bring Lynnea to church to reaffirm her baptism, and to celebrate her new birth in Christ the way that it deserves to be celebrated. She behaved like a typical one-year-old through the church service -- she played peek-a-boo with people sitting behind her, she dropped all of her toys on the floor hoping that we would pick them up for her, and she played "pass the baby" during the prayer. We hope that eventually she will learn how to worship in a more appropriate manner, but today we were just happy that she wasn't too frightened by all of the strangers around her. Thank you to everyone that has kept Lynnea in your prayers over this past year, and for continuing to pray for her as we anticipate more medical challenges to come.

No Tears!

Since birth, Lynnea has not been particularly fond of bath time. She typically screams through the whole thing, turning several shades of blue and purple because she gets herself so worked up. Well, tonight Ashlyn and Lynnea had bath time together; this isn't the first time we've tried this, but it is the first time that Lynnea seemed to actually enjoy it. They played nicely together in the tub for nearly ten minutes before Ashlyn decided that it was time for her to wash Lynnea. Even this went OK at first, but then Ashlyn decided to dump water all over Lynnea's face, and Lynnea got mad at her. We're still just really happy at the progress that Lynnea is making tolerating baths, and we look forward to being able to bathe the girls together more often.

Well-Child Check-Up

Lynnea went to see her pediatrician today for her 12-month well-child visit. I always think that it's ironic to bring her in for "well-child check-ups" because, obviously, she's not really a well child. Anyway, she's now completely caught up with all of her immunizations, which is a good thing for her, even though she absolutely hated going to the doctor to get poked again.

Medically speaking, she's doing OK for the moment (still waiting for a surgical plan, but again, we're not really expecting to get a plan until after next Monday's cardiology appointment), but she's having some sleep issues. Or, rather, she's causing me to have some sleep issues. The problem is that she has decided that Mommy is supposed to stand next to her crib all night. She falls asleep, and I am able to sneak out of the room, but she periodically (at least once per hour) decides to open her eyes and look around to make sure I'm still in the room; if I'm not there, she cries. When I come in to calm her down, I don't have to actually do anything -- she doesn't want to be picked up, she doesn't need me to rub her back, or sing to her, or anything -- she just wants me to stand there. Unfortunately, since I haven't mastered the art of sleeping standing up, this has been a bit problematic. If she were a normal, healthy child, I would let her cry herself back to sleep, but with her, that's not really an option. So, until we somehow manage to convince her to turn her "Mommy Radar" off at night, I guess I'll have to live with being completely sleep deprived.

Home Sweet Home

Lynnea was discharged again this morning. She was taken off from all oxygen support during the night last night, and has done OK breathing on her own. Her lungs still sound a little wheezy, a little crackly, and up until an hour ago (after we gave her a PRN dose of Lasix, an extra diuretic that we have around for special occasions) a little "wet." But these are all things that our home-care nurse and I feel OK dealing with, so the doctors were all OK with sending us home. Her blood-oxygen saturations have been good, and her heart rate is back down to normal. She's really grumpy -- my suspicion is that she's going through a bit of withdrawal after being on so many sedatives (24 hours of high doses of Fentanyl will do that to a person), so I won't be surprised if we have a rough night. Hopefully she'll be in a better mood tomorrow.

So, for the short-term, she's doing fine. This morning the cardiology team discussed her longer-term situation in their weekly conference. Essentially, they came to the consensus that she needs more surgery relatively soon, but they don't know exactly what or when. She is out growing her B-T shunt, which in turn, is limiting the amount of blood flow to her lungs. This is a bad thing. The options that they are considering are replacing her B-T shunt with a bigger one, or possibly doing half of the Glenn procedure (yeah, I didn't realize you could do have of that operation either). There was also much discussion about her aorta, and whether or not it deserves some attention right now; the debate is still raging. She has two or three areas that appear to be a bit narrow, but none of them are really bad enough to warrant more surgery right now; the fear is that the cumulative effect of them is enough to overwork her right ventricle, and thus would be worth trying to repair soon. When I asked what kind of time frame we are looking at for surgery, I was told 2-4 weeks, but realistically, we're probably looking at surgery in early December. I will give more details when I learn more.