Tuesday, December 29, 2009

Merry Christmas

We had a very Merry Christmas together as a family. We were thankful that Lynnea was able to spend it with us at home. On Wednesday (12/23) we opened gifts at our house as a family because Corey worked both Christmas Eve and Christmas Day. On Christmas Eve we went over to Grandma and Grandpa Bergmann's house to open gifts with them. Christmas Day we went to church in the morning, and then over to Grandma and Grandpa Callison's house in the afternoon to spend some time with them. The girls both enjoyed opening gifts this year, though they were both pretty impatient when it came time for us to try to get the toys out of the packages! Ashlyn was very happy to help Lynnea open any of the gifts that she may have been struggling with, and Ashlyn also felt the need to check out all of Lynnea's toys to make sure that they worked. In all fairness, this was a two way street -- Lynnea was just as interested in most of Ashlyn's toys as she was in her own. It was nice to see the girls playing together with some of the new toys. We are all very thankful for all of the generous gifts that we received from family, friends, and people that we have never even met. All of this helped make this Christmas special for all of us.

Before Christmas, Ashlyn went Christmas shopping with Grandma and Grandpa Bergmann to buy presents for everyone in her family. As they approached the cash register, Ashlyn evaluated the shopping that they had done and then desperately told the cashier that they had gotten gifts for Mommy, Daddy, and Lynnea, but they hadn't bought a gift for Jesus. She asked the cashier what she should get baby Jesus for his birthday because she didn't think that it was right to not get him a present for his birthday. After discussing this with Grandma and Grandpa, and then again with me and Corey when she got home, Ashlyn finally decided that it would be OK to just give Jesus a card with some money in it so that he could buy whatever he wanted for his birthday. She excitedly placed her gift in the offering plate on Christmas morning. She was an example to us all of what Christmas is really about, and how we should all feel about celebrating Jesus' birth.

We continue to enjoy our time at home as a family through the rest of this holiday season, while anticipating Lynnea's next open-heart surgery, which is currently scheduled for January 12 at 1:30pm.

Sunday, December 20, 2009

Home Again

The doctors all agreed this morning that Lynnea should go home. Lynnea was very happy about this. Because it's the weekend, there were no follow-ups scheduled, so we still don't have a surgery date. We're still hoping for early January. Hopefully we will have a date set sometime this week -- it's always easier knowing when these things are going to happen.

Saturday, December 19, 2009

Still Hanging Out at the Hospital

Yesterday morning Lynnea was moved out of the PICU to the general floor. Yesterday afternoon she had another lung profusion scan, for which she needed to be put on the ventilator and sedated. After extubation she was having a little bit of extra work breathing, so they decided to watch her in the PICU overnight (I'm just happy that all they did was observe...at one point an overzealous resident was trying to put her on high-flow oxygen, which she clearly didn't need). Now they are going to move us out to the floor and watch her for another day because, even though her breathing improved overnight, she's still working harder than she normally does, so they want to watch her for one more day before sending us home. We still don't have a surgery date, but I don't really expect to get a date until after we're discharged.

Thursday, December 17, 2009

Cath Results

Lynnea's heart catherization went fine -- she was extubated shortly after being moved up to the PICU, and has been doing OK since then. She briefly needed some oxygen support, but we promptly weened her off from it again, and she's holding her own. That's the good news.

As for the results of her cath, they were not very encouraging. First there is her pulmonary vein. Over the past few months, Dr. Gruenstein has been doing an experimental "cutting balloon dilation" procedure on a monthly basis in order to try to open up Lynnea's left pulmonary vein. The expectation was that her vein would open up nicely during the proceedure, and then close back up within a month or so for the first three or four times that the procedure was done, and then after three or four times, the hope was that it would begin to stay open on its own. Today was the fourth time that Gruenstein dilated her pulmonary vein. The good news was that it had not narrowed as much in the past month as it had after the previous attempts. The bad news was that today Gruenstein was unable to open it up much more than it already was. Before today's dilation, the diameter of her vein was 2.7mm. He managed to open it up to 2.9mm. This was very discouraging news, and Gruenstein said that he believes it may be time to give up on this procedure and talk about trying to repair the vein surgically. Even though it might be possible to repair the vein surgically, the procedure to do so is very difficult and risky, and would need to be repeated fairly often (probably every couple of years), so it is an option that we have desperately been hoping to avoid.

The other discouraging news was that, from what Gruenstein could tell while he was in the cath lab, it appears than there is no blood flow at all to Lynnea's left lung. While Gruenstein offered a few possible explanations for this, he admitted that he was only guessing at the reason for it, and said that he doesn't know the cause. This causes a few extra challenges. It means that, without good blood flow to both lungs, she is still definitely not a candidate for the Glenn procedure. Even more importantly, if they can't restore blood flow to her left lung sometime in the near future, chances are good that she will ultimately lose her left lung, making a heart/lung transplant necessary at some point (which decreases her chances even further of ever finding a donor, and increases chances of rejection if she were to find a donor).

It still sounds like she will not have surgery until January, but we haven't discussed it specifically with Dr. St. Louis yet, so we don't know for sure. She needs another open-heart surgery to replace her B-T shunt, and probably have some more repair work done on her aorta.

Since she seems to be doing pretty well after her cath, we are hoping to be discharged tomorrow sometime.

Lynnea's Cath.

Lynnea's heart catherization began around 11am. The time that her heart caths usually take varies, so I don't know when she will be done. I will update later this evening after we hear the results.

Monday, December 14, 2009

Creative Vocabulary

I know that I spend a lot of time writing about Lynnea in order to keep everyone updated on her condition, and I feel bad that Ashlyn doesn't get equal time on what I originally intended to be a family blog. So, today I have some cute Ashlyn moments to share. Lately, one of Ashlyn's favorite TV shows is Little Einsteins. For those of you who are unfamiliar with it, it's a cartoon that focuses on teaching various musical concepts. Well, Ashlyn has a wonderful time applying stuff she learns from watching TV, and has been applying things from Little Einsteins lately. The other day she woke up and came into my bedroom and informed me that, "Sometimes at night Lynnea cries and cries. She gets louder, and louder, and louder. It's a crescendo!" This made me laugh pretty hard, and gave me a new perspective Lynnea's middle of the night upsets. Then, the night that we went to the Children's Museum, we were on our way home, and our nurse, Michelle, was driving, but apparently not the way that Ashlyn wanted her to. Ashlyn announced, "You're driving allegro. It's too slow. You need to go Presto!" I guess she was in a hurry to get home and go to bed. It was pretty cute, and we got a good laugh out of it.

As far as things with Lynnea go, her heart cath. is still scheduled for 11 am on Thursday, Dec. 17.

Thursday, December 10, 2009

More Milestones

This week Lynnea and Ashlyn have both had a few notable moments. First of all, on Tuesday night, Ashlyn managed to stay dry all night for the first time at home. She has managed this a few times at Grandma's house, but never here. Granted, I am still waking her up once during the night to use the bathroom because she still doesn't wake up on her own, but even with that, most mornings she still wakes up wet, so this is a big accomplishment. As of yesterday, Ashlyn made up her mind that she is ready to be a big girl and give up her pacifier. She made it through the night last night without it, and didn't ask for it at bedtime tonight (there were other bedtime issues, but I think at least part of that centers around the fact that she and Lynnea share a bedroom...). We are very proud of her and are happy to see her do such grown up things.

Lynnea's vocabulary is growing. She still doesn't talk much, but we are hearing more sounds, and she seems to be putting meaning to them. She now says "mama" (which she's been saying for a while now), "hi" and "up" all with meaning at least some of the time ("up" is very new, and she still just likes to say it sometimes because it's fun). She has also begun using a little bit of sign language and will occasionally tell us when she wants "more" and when she is "all done." She has also done an awesome job of tolerating some food orally this week. She's still not a fan of having food in her mouth, and I wouldn't really call her a willing participant at meal time, but we've managed to sneak several bites of baby food in without her completely gagging on them. She has also decided that she likes to drink juice from a sippy cup (prior to this week, she would only drink water). At dinner this evening, she had a small bowl with some baby food carrots and bananas in it, and since she was unwilling to let us feed her any of it, we just let her play with it. She used the spoon to offer us bites of it (which we all politely refused because carrots and bananas is a pretty nasty combo if you ask me...) and by the end of the meal she had managed to get some into her own mouth. That was pretty funny because she kept looking at all of us wondering which one of us had managed to sneak food into her mouth. We continue to be very thankful for any progress that she makes.

Tuesday, December 8, 2009

Next Heart Cath. Scheduled

Yesterday Lynnea had another cardiology visit at the U of M. Her cardiologist, Dr. Gruenstein, is cautiously optimistic about how her pulmonary vein is looking; unfortunately he can't say for sure that things are really going better because it's hard to get a good look at it with an echocardiogram, and since Lynnea hate having echocardiograms and is not very cooperative during them, it's even harder to get a really great look at anything. He'll know more after her next heart catherization, which is currently scheduled for 11am on Thursday, Dec. 17 -- she's on the waiting list if something opens up sooner than that, but so far it looks like it will be next Thursday. Even though her pulmonary vein appeared to look better than we had expected, her heart function is not very good right now, most likely because she needs a bigger B-T shunt (which we've known for the last couple of months), and possibly due to the narrowing in her aorta. Again, we'll know more after the next heart cath., and from there we should have a better idea of what the surgical plan will be (mainly, how soon she will need to have surgery to replace her shunt).

Thursday, December 3, 2009

Children's Museum

Ashlyn, Lynnea, and I, along with our nurse, Michelle, attended another HopeKids event at the Minnesota Children's Museum (Corey was unable to attend because it was in the evening and he goes to bed early because he has to get up at 3am for work). We all had lots of fun. Ashlyn enjoyed several of the exhibits, but she especially enjoyed playing in the bubbles (and the other water activities, for that matter), and LOVED the fully equipped kid-sized play kitchen. Lynnea enjoyed watching all the people, and also had fun playing in the bubbles.