Tuesday, December 29, 2009
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
Saturday, December 19, 2009
Thursday, December 17, 2009
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.
Monday, December 14, 2009
As far as things with Lynnea go, her heart cath. is still scheduled for 11 am on Thursday, Dec. 17.
Thursday, December 10, 2009
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
Thursday, December 3, 2009
Saturday, November 28, 2009
Thursday, November 26, 2009
Monday, November 23, 2009
Sunday, November 22, 2009
Friday, November 20, 2009
Tuesday, November 17, 2009
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.
Friday, November 13, 2009
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.
Thursday, November 12, 2009
Wednesday, November 11, 2009
Tuesday, November 10, 2009
The first issue of concern was her pulmonary vein stenosis. For the past week and a half, or so, at home, Lynnea's sat's have been a bit low, her heart rate has been high, she has been wheezing (and has not really been clearing after her nebulizer treatments), she gets sweaty even when she's not upset, and she hasn't been tolerating her feeds as well as usual. These symptoms typically point to some sort of a cardiac problem, and these are all symptoms that we have seen a few weeks after each of her cutting balloon dilations, so it was no surprise that her pulmonary vein, once again, had narrowed and needed to be ballooned open again. This is the third time that Dr. Gruenstein has performed the experimental cutting balloon dilation on Lynnea. Prior to the first dilation, her vein had narrowed to 1 millimeter; after the first dilation, it opened up to 3.5 mm. One month later when she had the second dilation, her vein had narrowed back down to 2.4 mm, and after the second dilation it opened up to 3.5 mm again. Today her pulmonary vein had narrowed down to 2 mm, and after the dilation it only opened up to 3 mm. So, Dr. Gruenstein isn't sure if this is really working, considering that we don't seem to be making much progress. He's not willing to give up on it yet -- the cardiologist in Cleveland who has done this on three or four other patients warned that it typically takes three or four times before any real progress is seen. So, Dr. Gruenstein plans on trying at least one more time before giving up on this process.
The second issue of concern was her aorta. The spot that was stented during her last cath still looked pretty good, though Gruenstein attempted to open it up a little bit further by sending a balloon through it. The real concern was an area near the stent that had narrowed since last time, and because of its location, cannot be ballooned or stented open. To tell how bad narrowing is in the aorta, they measure the gradient of blood flow through it. A high gradient is bad, a low gradient is good. Prior to stenting last cath, the gradient across the narrowed area was 40. After stenting, it was 10, which is good. Today the gradient through the stent was still 10, but the area near the stent was up to 40. Dr. Gruenstein feels that, because he can't balloon or stent the spot that is narrow, she will probably need more surgery to repair it sometime in the near future (he was pretty vague about when he thought this would need to be done, and when I talked to Dr. St. Louis briefly in the hallway today, he hadn't had a chance to look at the cath results yet).
The third issue was her B-T shunt. Just like last month, Dr. Gruenstein feels she is outgrowing it and it needs to be replaced. Again, we're hoping that Dr. St. Louis will be able to replace it and address the issues with the aorta at the same time.
Due to the concern about the aorta, Lynnea is scheduled to have a CT scan in the morning to get an even better picture of things. Because of this, the doctors decided to keep her intubated and sedated until morning. As has become the pattern with Lynnea, keeping her sedated has been a challenge. She has built up a bit of tolerance to many of the sedatives that they give her, and manages to wake up even after she has been given significant doses of medication. Since Fentanyl, and Versed were having very little effect on her (she was awake and trying to sit up despite the several boluses of each she had been given), she was switched to Ativan, which so far seems to be doing the trick. Hopefully she will have a peaceful night, and be able to go home sometime tomorrow.
Friday, November 6, 2009
Tuesday, November 3, 2009
Monday, November 2, 2009
Saturday, October 31, 2009
Lynnea has another cardiology appointment at the U of M on Monday. We are hoping to spend at least another week at home before she needs to go back into the hospital for another heart catherization, but we'll see what Dr. Gruenstein has to say about that.
Thursday, October 22, 2009
Monday, October 19, 2009
Anyway...since I haven't posted any pictures in awhile, I figured I should do so now. So, here is a picture of Lynnea snuggling with Corey at the hospital, and a picture of Ashlyn that I took the other day when she decided to style her own hair.
Sunday, October 18, 2009
Saturday, October 17, 2009
Monday, October 12, 2009
On a lighter note, I noticed today that Lynnea now has seven teeth, four on top, three on the bottom. As always, we hope that she figures out that they are for chewing food sometime soon (rather than just grinding them, which she seems to like to do, and which drives me crazy).
Sunday, October 11, 2009
Saturday, October 10, 2009
Friday, October 9, 2009
Lynnea will be spending the night in the PICU, and as long as she remains stable, she will move back to the general floor tomorrow. They were able to extubate her a few hours after her cath, and she is only on a little bit of oxygen support. We will be staying in the hospital until Lynnea is able to tolerate her feeds again.
Thursday, October 8, 2009
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Monday, October 5, 2009
Wednesday, September 30, 2009
Thursday, September 24, 2009
Saturday, September 19, 2009
Lynnea has now spent as many days at home during her life as she has in the hospital -- 162 each. Now, if we're lucky, we won't have any more long hospital stays before her birthday, and then she'll be able to say that she spent more time at home during her first year than in the hospital. I'm optimistic about it.
This week Lynnea decided that she loves to play peek-a-boo, and other assorted made-up baby games that involve people copying things that she does (like clapping, and shaking her head back and forth). She has also decided that nap time is a complete waste of her time, so she avoids it whenever possible. Tooth number four showed itself on Wednesday -- she now has three on the bottom, and one on the top (if we could only convince her that these new sharp objects that have invaded her mouth are good for chewing food, life would be great). We expect another tooth or two soon.
I had an interesting conversation with Ashlyn yesterday about doctors and nurses. She was pretending to be a nurse, so I asked her, "what do nurses do?" She replied, "They listen to people with a stethoscope, and they weigh people on a scale." So, then I asked, "What do doctors do?" She answered, "They listen to people with a stethoscope." I asked, "Do doctors help people get better?" Ashlyn answered, "No, they just talk a lot." That made me laugh pretty hard. Then I had to ask, "Do nurses help people?" Ashlyn replied, "No, they just like to poke people with sharp sticks." Apparently Ashlyn still harbors ill feelings towards the nurse that immunized her at her last doctor's visit.
Saturday, September 12, 2009
Friday, September 11, 2009
Sunday, September 6, 2009
We've also taken advantage of this time at home to transition Ashlyn to a "big girl" bed -- we converted her crib into a daybed. She sleeps OK in it most of the time, except when she falls out and lands on the floor with a nice "thud." It's kind of funny because about half of the time she doesn't even wake up, she just crawls back in bed like nothing happened. (I know this because I've been in the room taking care of Lynnea when she's done this, and it's really hard not to laugh at her.) We're just really glad that it's not a very far fall from her bed to the floor.
Tuesday, September 1, 2009
Sunday, August 30, 2009
Monday, August 24, 2009
In the past week Lynnea has learned how to clap. She gets so excited and looks so proud of herself when she does it; it's pretty cute. She still won't allow any food to go into her mouth without gagging, but we're still trying. She accidentally rolled herself onto her tummy on Saturday; she stayed there without any problems until she realized she was on her tummy, then she got mad and screamed about it. She also looked at me as though I had done something terrible to her, even though that time I wasn't the one that put her on her tummy. She eventually calmed down enough to roll back onto her back, then she was fine.
Tuesday, August 18, 2009
Sunday, August 9, 2009
We still don't have any idea when she will have her next surgery. We've tried to call Dr. St. Louis several times, but still haven't been able to contact him.
Wednesday, August 5, 2009
Today Ashlyn and Lynnea enjoyed playing outside. Ashlyn played with her ball, played with her new Frisbee, and helped rake the lawn. Lynnea enjoyed swinging -- this was the first time she has used the swing in the backyard. She enjoyed it so much that she fell asleep and took a 45 minute nap in the swing.
Saturday, August 1, 2009
We've been approved for private duty nursing, and since we decided to wait to have surgery, our nursing services began on Thursday. We have two nurses assigned to Lynnea's case, and they both seem to be really good with her. We will have a nurse here to help out with Lynnea ten hours a day, Monday through Friday. Ashlyn loves this, and is very happy that we have a nurse here all the time to play with her. Yes, even though we've tried to explain to Ashlyn that it's Lynnea's nurse, Ashlyn really seems to think that the nurse is her own personal playmate. Ashlyn especially enjoys playing "doctor" with the nurses, which is really funny to watch. Until the novelty of having someone around all the time wears off, I'm sure the nurses will spend a lot of time playing with Ashlyn, which is fine because it seems to make Lynnea more comfortable to see Ashlyn interacting with unfamiliar people; Lynnea is more likely to accept a new person if Ashlyn approves of them first.
Tuesday, July 28, 2009
Thursday, July 23, 2009
Tuesday, July 21, 2009
Wednesday, July 15, 2009
Monday, July 13, 2009
Yesterday and today Megan took more pictures of my girls. Here are some of them -- they are still completely unedited, but very cute.