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.


Saturday, November 28, 2009

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.

Thursday, November 26, 2009

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.

Monday, November 23, 2009

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.

Sunday, November 22, 2009

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.









Friday, November 20, 2009

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.



Tuesday, November 17, 2009

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.

Friday, November 13, 2009

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.

Thursday, November 12, 2009

Once Again, "Impressive"

At one point last spring when Lynnea was in the hospital during her really long stay, the cardiology team had made a comment about her being "unusual and impressive," and I wrote about this in one of my blog posts. Well, yet again, the word "impressive" is being thrown around, and I have come to understand that when doctors use the word "impressive" they are really using it as a euphemism for bad things. Yesterday during evening rounds, Chuck (Dr. Shepherd, one of the Cardiology Fellows) told me that on the preliminary C-T scan results he "hadn't noticed anything impressive about Lynnea's aorta" meaning that it might not be as bad as Dr. Gruenstein had thought. This morning during rounds, the doctors all decided that Lynnea had bought herself another night in the PICU because of "how impressive she was after extubation yesterday." Yes, last night they took Lynnea off the ventilator around 5pm, and it didn't go very well (but, in some ways, we've kind of come to expect stuff like this from her -- Lynnea doesn't like to do things the easy way). She had a very difficult time breathing on her own, and nearly had to be re-intubated; fortunately, after a few different nebulizer treatments, some IV steroids, and giving her a helium/oxygen blend through a high-flow nasal cannula, she managed to avoid being put back on the ventilator. She had us all a bit worried during this time; I've been around long enough to know that when they start moving extra items in the room (like rocking chairs) out into the hallway, and begin bringing extra carts (like the emergency intubation cart, and the crash cart) into the room, things are not going well. Because of this little incident, there was really no chance of going home today, but since she has done pretty well today (she was taken off the helium/oxygen blend this morning, and we've managed to wean her high-flow steadily throughout the day) there is some talk of possibly going home tomorrow, and at the very least, if they decide not to send us home tomorrow she should be able to move out of the PICU to the general floor. She will be a topic of discussion at the weekly cardiology conference tomorrow morning to decide whether or not she needs any surgery in the near future.

Wednesday, November 11, 2009

Hospital Time

Due to communication deficits here at the hospital, Lynnea will not be going home today, but hopefully she will make it home tomorrow morning. The C-T scan that was supposed to happen first thing this morning (yesterday we were told that it was scheduled for 7:15am) didn't happen until 10:45am. During morning rounds, I asked whether or not anyone had ordered, or was going to order, a lung profusion scan, and everyone just kind of looked at me like they've never heard of such a thing, then after some discussion, Dr. Kochillas (attending cardiologist this week) said that he thought it would be a good idea to do one while she is still sedated (and intubated...and for the record, keeping her sedated gets harder by the minute). Well, even though Dr. Kochillas thought she should have a lung profusion scan, no one ever bothered to put an order in for it. So, after her C-T scan, I asked again when she was going to have her lung profusion scan, and was told that "one wasn't ordered, so they must have decided she doesn't need it." After demanding that they double check this with cardiology (and, if they said they didn't want one, I wanted a specific reason for not doing it) an order was placed, but the soonest that she could get one was 3:00pm (again, keep in mind that she during this entire time she is still intubated and sedated, with so much sedation on board that her blood pressures started dropping -- for a while they were sitting as low as 50's over 20's). Lynnea didn't actually leave to go for her scan until 3:30pm, again due to some communication issues. Hopefully as soon as she gets back from her scan, they will allow her to wake up and then promptly extubate her. Because it is so late in the day, they want to hold her in the PICU overnight to make sure she does fine after they take her off the ventilator. They also need to re-start her feedings to make sure she is tolerating them. The good news for the day is that her temperature has returned to normal and has remained normal all day.

Tuesday, November 10, 2009

Today's Heart Catherization

Lynnea made it through yet another heart catherization without any problems during the cath itself, though she did spike a fever afterwards, and no one is really sure why. I'm not sure if she is still running a fever (it was still above her normal temp the last time the nurses checked, but "technically" it wasn't a fever -- probably because she was given Tylenol; we'll see what it is after the Tylenol wears off).

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

Making Potato Soup

Yesterday, Ashlyn, Lynnea, nurse Michelle, and I made potato soup for supper. Lynnea enjoyed sitting in the middle of the kitchen floor playing with two potatoes that we gave her. She would hand one to me, and one to Michelle, and then want them both back again. She thought this was a really fun game. Ashlyn helped wash the potatoes, and then helped stir the soup, and tasted it to make sure that it was good. It was fun to have a "normal" day cooking with my two little girls.


Tuesday, November 3, 2009

Home Until Next Tuesday (Hopefully)

Today we played the all too common "to discharge, or not to discharge" game all day, and this evening they finally decided to send us home. Lynnea's triponin levels that they checked last night still looked fine, and she seems to be in stable condition, so the cardiology team felt that it was fine for us to go home for now. She has another heart catherization scheduled for next Tuesday...I don't have an exact time, but she is scheduled as the second case of the day (so probably late morning). The doctors feel that the most likely cause of her extra high hemoglobin levels is her narrow pulmonary vein. The narrowing of her pulmonary vein causes her blood-oxygen saturation levels to dip even lower than her usual, which makes her body think that it should try to compensate by producing more red blood cells, which contain hemoglobin. Hemoglobin is the part of the blood that carries the oxygen, so more hemoglobin should mean higher sat's. Unfortunately, in Lynnea's case, this doesn't really bring her sat's up, and it can cause extra problems because more red blood cells means thicker blood, which is more likely to clot off her B-T shunt (this is why she takes daily aspirin as a blood thinner). Hopefully, another heart catherization which will include another cutting balloon dilation should open up the pulmonary vein enough so that her body stops producing extra red blood cells, and her hemoglobin levels should return to normal. If her hemoglobin remains high after the cath, they will look at other options, including changing some of her medications (most likely increasing her aspirin, or adding an additional blood thinner).

Monday, November 2, 2009

Back at Our Home Away from Home

This morning Lynnea had an echocardiogram and appointment with her cardiologist, Dr. Gruenstein. After looking at her echo results, Dr. Gruenstein "didn't like what he saw" and decided to admit us to the hospital again to run a few more tests. Lynnea had a chest X-ray, an EKG, and some lab work done. During afternoon rounds, there was some debate about whether, or not, Lynnea's echo really showed a decline in heart function, and increase in her tricuspid valve regurgitation (this is not a new problem, and often varies in severity, which is generally a pretty good indicator of early heart failure for her). Dr. Pyles, the attending cardiologist this week, and Dr. Bass, head of the cardiology department disagree on the echo results, but the both feel that her EKG from today actually looked a little bit better than the last EKG that she had done. Her lab work showed that her hemoglobin is higher than normal (her levels always run a little on the high side, but today's results were high even for her) which the doctors can't explain. It also showed that her triponin levels were normal, which is a sign that she is not in heart failure. She had more labs drawn this evening, again to check her triponin levels, just to make sure that the earlier results were accurate. I haven't heard the results of her chest X-ray. For now, the plan is to keep her here overnight to continue to monitor her, and if she seems to be remaining stable, and doesn't have any unforeseen issues, they might discharge her tomorrow.

Saturday, October 31, 2009

Happy Birthday Lynnea!

Birthdays are always important milestones, and in Lynnea's case, being able to celebrate her birthday today was extra special because there were several times over the course of the past year that we were reminded that reaching her first birthday was not a guarantee. During her first year, she had five heart surgeries, six heart catherizations, she spent 176 days in the hospital, and 189 days at home. We celebrated today with a party that included grandparents, aunts, uncles, and a few of our close friends. We were worried about how well Lynnea would handle having so many unfamiliar people around at once because she still has a significant amount of stranger anxiety, but as long as Mommy and Daddy stayed close by, she really seemed to enjoy herself. She was excited about the balloons, and curious about the cake. She stuck her fingers in the frosting, and then promptly began to fuss because her hands were sticky. She absolutely refused to allow any cake or frosting into her mouth, but we kind of expected that from her. She had fun pulling presents out of the gift bags, she liked playing with the wrapping paper, and Ashlyn did her big sister duty of "helping" Lynnea open her gifts. Ashlyn also acted as "gift inspector" and thoroughly checked out all of the new toys before giving them to Lynnea to play with.

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

"Stable Respiratory Status"

Lynnea was discharged from the hospital again this afternoon. After discussing her situation with some of the doctors (Dr. Martin -- the attending cardiologist this week, Dr. St. Louis -- the surgeon, and Clare -- Dr. St. Louis' nurse practitioner) we decided that we are comfortable enough with having her at home, even though she is still coughing a lot, and her sat's are still lower than normal. Corey, Ashlyn, Lynnea and I are all still coughing and feeling a little under the weather, but it is nice to be home, and I think we will all appreciate sleeping in our own beds tonight.

Monday, October 19, 2009

Another Day in the Hospital

Lynnea continues to keep her sat's lower than usual, but still does not require oxygen support. She is still coughing, sneezing, and wheezing. The nurse this morning informed me that during rounds the doctors were discussing the possibility of sending her home tomorrow. This evening the note in the computer said "discharge pending stable respiratory status." I have no idea what the doctors are considering "stable respiratory status" these days, but the way I see it, she hasn't really improved any since we brought her in on Saturday, so I'm pretty sure she won't be ready to go home tomorrow. I haven't actually talked to any doctors since Saturday when we were in the E.R. because they have been doing rounds in the hall and neglecting to send anyone in to talk to me afterwards. This is nothing new; the same thing happened last time we were in the hospital. It's frustrating, and incredibly irritating.

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

Influenza A

Lynnea's rapid culture for influenza A came back positive; they sent the H1N1 culture, but we won't know the results of that for a few days (a lot of positive influenza A patients actually have H1N1). Overall, Lynnea had an OK day; she's grumpy and has had a difficult time getting the rest that she needs due to her cough and difficulties breathing. Her sat's are still low, but she is still getting by without any extra oxygen support. She is getting her nebulizer treatments every four or five hours, and we're giving her Tylenol around the clock for comfort. This evening she seems to be in a better mood -- not screaming at everyone who walks through the door, and doing "naughty" things like pulling on her G-tube, trying to get her oxymeter probe off, etc. I am hoping that tonight she is able to get more rest than last night because we could both desperately use a good night's sleep (I have also managed to catch the flu, which makes it pretty miserable to be in the hospital trying to take care of a sick baby).

Saturday, October 17, 2009

Sick Again

Lynnea is back in the hospital. She is coughing, wheezing some, her sat's are kind of low (low 70's instead of high 70's), this morning her heart rate was high, and she was running a fever. So, the doctors are running viral cultures again, they did a chest X-ray which looked fine (no signs of pneumonia), and they are running her labs. It looks like we'll be hanging out here until Lynnea is back to her usual self (hopefully this will only take a few days, but with her, sometimes it takes a little longer).

Monday, October 12, 2009

One Step Forward, Two Steps Back

Lynnea was able to come home from the hospital today, and she has been very happy and excited ever since. Unfortunately, last night, and again early this morning, there were some "irregularities" that were showing up on her EKG. It turns out she has what is known as a "heart block." Heart function has two main components: electrical (the system of electrical signals that tell the heart when, and how hard to beat), and "plumbing" (the muscle, arteries, and blood vessels that allow the heart to efficiently pump blood to the entire body). Up until now, Lynnea's heart problems have all been with the plumbing part of things, while her electrical system has been fine. Now it looks as though the electrical signals that that tell her heart when to beat are not coordinated exactly as they should be. The doctors had a discussion about it this morning, and are hoping that this problem is pretty benign. They said that, in a normal healthy adult heart, this problem wouldn't be an issue, but since Lynnea is a baby, and more importantly, the anatomy of her heart is very different from most people, they aren't exactly sure how serious this could end up being. They sent her home with a small monitor to record her EKG for 24 hours so that they can get a better look at how often her heartbeat is irregular. This will help them determine whether or not a pacemaker is something that she will need to correct the problem.

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

Maybe Home Tomorrow

Lynnea has been tolerating her bolus feedings all day today, so we will probably go home tomorrow. She now has a cough and has been sneezing a lot, but unless she gets significantly worse, the doctors feel she would probably be better off at home where she is less likely to catch any other illnesses. Her sat's have been fine. There was some sort of abnormality showing up on her EKG earlier this afternoon, so she had to have labs drawn; I have not heard any lab results yet, which probably means they were fine. We're hoping for a quiet night, and as long as there are no surprises, we'll head home sometime tomorrow.

Saturday, October 10, 2009

Starting to Feel Better

During the night last night Lynnea was taken off from oxygen support and has been doing fine breathing on her own ever since. This morning she was moved out of the PICU and back onto the general floor (5A). Her rapid influenza and H1N1 cultures came back negative, but the final results are still pending, so for now she's still in isolation, which is nice because we get our own room. Today they began slowly restarting her feedings. Most of the day she only got small bolus feedings of Pedialyte. She was gaggy during her first one this morning, but has handled the rest just fine. At 7pm they started her back on a slow continuous drip of formula, and so far it seems to be going OK. If she handles the formula all night, then tomorrow morning they'll slowly start her back on bolus formula feedings. If all goes well, I would guess we might get to go home on Monday or Tuesday. Last night Lynnea decided that she was thirsty, and for the first time in many months, allowed us to put water into her mouth. She was willing to "drink" water off from an oral swab (a small mint flavored sponge on a stick). She continued this today and over the course of the day drank a couple of ounces of water, which was really nice to see. Of course, this evening she is back to swatting my hand away whenever I offer her a drink, so either she's not thirsty, or she remembered that she hates having anything in her mouth. Sometimes she's just silly like that. But, overall, she appears to be feeling much better than she has been all week, which is very encouraging.

Friday, October 9, 2009

More Disappointing News

Lynnea had her heart catherization this morning. The procedure itself went fine, and Lynnea is doing OK. Dr. Gruenstein performed another cutting balloon dilation on her left pulmonary vein. He continues to have high hopes that repeating this procedure a few more times may open up her pulmonary vein enough so that she can eventually have the Glenn procedure done. There was some narrowing of her aorta that has been a slight concern for a while now (so, not a new problem) that had gotten worse. So, Dr. Gruenstein decided to put a stent in to open the area up. There was also another spot on her aorta that was narrow that had not been narrow before. This spot is near the place where Dr. St Louis merged her aorta and pulmonary artery when he did the Norwood procedure, and it is not a place that can be ballooned or stented open. At some point, probably in the relatively near future (it would need to happen before she can have the Glenn, which of course, is still unscheduled so it's difficult to have a clear idea of when it would actually happen) this would need to be addressed surgically. Also, today's catherization showed that she is beginning to outgrow her B-T shunt. Dr. Gruenstein told us that it will probably be necessary to replace her B-T shunt with a larger one some time soon; he's hoping that Dr. St. Louis will be able to replace the shunt and repair her aorta at the same time.

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

Still Planning on Doing Heart Cath Tomorrow

Lynnea was restless and fussy all through the night last night, and much of the day today. Her sat's have been fine, she still sounds a little wheezy, and her upset tummy continued throughout the day today. The cardiology team still feels that it is in her best interest to go ahead and do the heart catherization tomorrow morning. I don't have an exact time, but the best estimate they could give me was around 11:30am.

Wednesday, October 7, 2009

Back in the Hospital...Again

Yes, we were home for less than 24 hours this time, a new record, though not necessarily one to be proud of. This morning when our home-care nurse, Michelle, arrived at our house, she listened to Lynnea's breathing, and, of course, Lynnea was wheezing again. So, we gave her a nebulizer treatment. This helped some, but did not completely clear her lungs like it usually does. Also, during Lynnea's morning feeding, she was gagging and spitting up. She was not running a fever or anything, but she was really crabby. We waited for a few hours until we could give her another nebulizer treatment to see if that would clear out her lungs. It didn't. And, during her noon feeding, she began throwing up even more than she had this morning. So, Michelle called the hospital and told them that Lynnea really needed to come back because she was in worse shape than she had been on Monday when they first admitted her. So, we're back in the hospital at least until her heart catherization on Friday; they put in an IV, and are giving her IV fluids to keep her hydrated because she's not tolerating her feedings, they did another chest X-ray (I haven't heard how it looked), and they are running her labs to make sure that they are all still normal. Maybe we'll know more tomorrow, though I suspect that we won't have any real answers until after her heart cath on Friday.

Tuesday, October 6, 2009

At Home Until Friday

This afternoon the doctors decided that Lynnea is fine and should go home until her heart catherization on Friday. From a cardiac standpoint, I agree nothing has changed in the past 24 hours that would warrant keeping her in the hospital until Friday. Unfortunately, her temp is a little higher than normal for her, she's irritable, and she is gagging during her feeds. My guess is that she might be getting sick. If I'm right, they will probably have to reschedule her catherization. We'll see how she does tomorrow. On the bright side, she is definitely happy to be home, which is really good to see.

Monday, October 5, 2009

Clinic Visit Turned Hospital Stay

This morning Lynnea had another cardiology visit at the U of M with Dr. Gruenstein. We told him that things haven't improved since we were in a week and a half ago. She still has some wheezing in both lungs; she clears when we give her nebulizer treatments, but the wheezing returns within a few hours. Her sat's have been running a little lower than her norm over the past week at home, and this morning when we were in clinic she was sitting in the low 60's. She had another echocardiogram this morning, and Gruenstein said it looked OK, but it was pretty obvious that Jim, the echo tech, did not think it looked good at all. Also, Lynnea is not gaining weight the way that she should. All of these factors managed to get us admitted to the hospital. The plan is to run viral cultures on her to make sure she doesn't have any viruses (they still haven't swabbed her; it's been an "on again, off again" order all day, and it still hasn't gotten done). Even though she doesn't appear to have any sort of illness -- no runny nose, no coughing, no fever -- it's nice to run the cultures because it means she gets a private room at least for 24 hours. She tentatively has another heart catherization scheduled for Friday (I don't have a time, but I heard she'll probably be second case, so not first thing in the morning) to get a look at her pulmonary vein to make sure that it's not closing up on her again (it most likely is). Rumor has it that we should expect to hang out in the hospital at least until after her heart catherization, so it looks like we'll be here all week. Lynnea doesn't enjoy being here, and it's challenging to keep her entertained.

Wednesday, September 30, 2009

11 Months Old

Lynnea is now eleven months old. She still refuses to roll over, but she continues to make strides in her motor skills in general. This week she's been doing this cute little "butt bounce" -- she lays on the floor on her back, puts her feet on the floor and pushes her butt up in the air repeatedly. She thinks it's really funny. We're waiting for this to become more of a "scoot" than just a "bounce." She also still refuses to let food, or anything that she thinks might be food, anywhere near her mouth most of the time, though today she was willing to gnaw on an apple and on a carrot stick for awhile. She's teething, so I'm sure the apple and carrot felt pretty good against her tender gums. As far as her health goes, her sat's have been staying up in her normal range again, but we'll see if they stay that way now that we're back to only giving her nebulizer treatments when she sounds wheezy (we'd been doing it three times a day since Friday because that's what her pediatrician told us to do to help clear out her lungs), and now that her five day course of steroids are done (also to help clear her lungs). The combination of teething and being on the steroid has made sleeping difficult for her (and everyone else in the house...). Hopefully, she will find a way to sleep peacefully again sometime soon.

Thursday, September 24, 2009

An Unscheduled Trip to the U

Lynnea's blood-oxygen saturations have been running low the past two days (low 60's before a neb treatment, low 70's after; normal for her lately has been 77-82), so our home care nurse called Dr. Gruenstein and Dr. St. Louis yesterday to inform them about it, and to ask what they wanted her to do about it (bring her in? give her oxygen?). They neglected to call her back, so when Lynnea's sat's were low again today, our nurse again called about it. Dr. St. Louis felt that Lynnea should be seen by Dr. Gruenstein today, so we brought her in for a clinic visit. They did an echocardiogram, a chest X-ray, and some lab work. We spoke with both Dr. Gruenstein, and one of the cardiology fellows, Dr. Shepherd and they felt that her echo still looked OK, her chest X-ray was clear, and her labs looked OK, though her hemoglobin is a little bit high, so they sent us home and told us to keep an eye on her sat's and let them know if they continue to run lower than usual. Corey, our nurse who came with us, and I all felt that the doctors weren't entirely convinced that Lynnea is really OK, but there wasn't any obvious reason to admit us to the hospital, so they sent us home and told us to come back for another clinic visit with Gruenstein on Oct. 5. It is frustrating to not have any answers about why her sat's are running so much lower than usual, and we hope that we are not headed towards another long hospital stay in the near future.

Saturday, September 19, 2009

Breaking Even

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

Home Again

Lynnea was discharged from the hospital this afternoon. She was taken off the ventilator yesterday afternoon, and has been doing pretty well ever since. Yesterday, after all of the doctors and nurses were done picking on her, she sat with me in the rocking chair and was very playful. Last night she did not sleep well, and she was pretty grumpy today until we were discharged. Now that we are home, she is in a pretty good mood, and is genuinely happy to be away from the hospital.

Friday, September 11, 2009

Another Heart Catherization with Unexpected Results

This morning's heart cath went fine from a procedure standpoint, but, like every cath that Lynnea has, the results were not exactly what Dr. Gruenstein was expecting. He went in expecting to take some pictures, and then discuss Lynnea's aorta with Dr. St. Louis to determine what they wanted to do about the remaining blockage in her aortic arch. Well, for now the discussion about her aorta has been placed on the back-burner, and the focus is on the more pressing issue of her left pulmonary vein. We were aware of the blockage in her pulmonary vein, but today's cath showed that the blockage is worse than expected, and worse than it was during the last cath. Lynnea only has one left pulmonary vein flowing into her heart, as opposed to two like most people. On a normal person, each pulmonary vein is about 5 millimeters in diameter. Lynnea's pulmonary vein had narrowed to 1 millimeter. Because of this narrowing, 90% of her blood flow was going to her right lung, instead of flowing equally into both lungs. Dr. Gruenstein presented us with a variety of options for how the pulmonary vein issue could potentially be resolved, each with significant drawbacks, and no guarantees of long term success. In the end, we chose to allow him to perform a procedure that he has never done before, that a cardiologist in Cleveland suggested (this cardiologist has tried this procedure a few times with some success, but it's still a bit experimental, so there's no long term data). Dr. Gruenstein used a "cutting balloon" (a balloon with tiny razor blades on it) to open up the pulmonary vein and place several tiny cuts on the inside of the vein. Then he used a regular balloon to open the vein up more. The results were positive, but he warned us that the doctor in Cleveland has found that the procedure needs to be repeated three or four times before the vein will remain open for any significant length of time. So, Lynnea will probably need to come back to the hospital on a monthly basis to have this done for the next few months. Due to all of this, she will not be having surgery on Sept. 21. That procedure has been postponed, hopefully until this pulmonary vein issue is resolved. Right now Lynnea is in the PICU, she still has the breathing tube in, but she should have it removed later today. There is a chance that she could be discharged from the hospital as early as tomorrow. I will update again when I have more news to report.

Sunday, September 6, 2009

Two Months at Home

We have been home now as a family for two whole months. Lynnea now sits up on her own, claps, and sometimes tolerates tummy time in the beanbag chair. She has also finally gotten another tooth (it's been a long time coming). Unfortunately, we will be heading back to the hospital this Friday (9/11) for another heart catherization in preparation for Lynnea's next surgery on Sept. 21. We had hoped that she would not need another heart cath. before surgery, but Dr. Gruenstein and Dr. St. Louis both thought that it is needed. It is possible that we will be in and out of the hospital on the same day for the heart cath., but that's a best case scenario, and I'm not overly optimistic that we will not have to stay for at least a day or two.

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

10 Months Old

Lynnea is 10 months old! Yesterday we had another cardiology appointment at the U of M. As usual, Lynnea hated this. Her echocardiogram showed no significant changes, which is both good and bad news. It's good because it means her heart is still doing OK, so we don't have to move the surgery date up or anything like that. The bad news is that her pulmonary vein did not show any improvement, so when she has her next surgery at the end of September, Dr. St. Louis will need to reconstruct it. We were really hoping to avoid the need for the pulmonary vein reconstruction, but at the same time, this doesn't come as much of a surprise.




Sunday, August 30, 2009

Picnic












Ashlyn and Lynnea both enjoyed having a picnic at the park this past week. Ashlyn has decided that playgrounds are great things! Lynnea loves being outside because there is so much to look at.
Lynnea has also been sitting up mostly unassisted in the past couple of days, which is very nice to see.


Monday, August 24, 2009

Still at Home :-)

We are thankful for another week at home together as a family. Next Monday Lynnea has an appointment at the U of M with Dr. Gruenstein (her cardiologist). This is just a regular follow-up visit, but it's been awhile since she's had one, so we are hoping that there aren't any unpleasant surprises. Her next surgery has been scheduled for Monday, Sept. 21, at 7am. As always, we kind of expect the date to change several times before she actually has surgery, but that's just the way things go.

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

6 Weeks at Home!

We've hit the six week mark at home now! There have been many moments over the past nine and a half months when I questioned whether we would ever get to stay home this long, and now here we are. We still don't have any idea about when Lynnea will go in for her next surgery -- we're having a difficult time getting a hold of Dr. St. Louis. Last week Lynnea caught a little bit of a cold, but so far, we've managed to handle it at home. We're still giving her nebulizer treatments once or twice a day, and our home health nurses continue to monitor her for increased work of breathing. She also seems to be teething. She's been more irritable than usual at night, drooling a bit, and sticking everything she can get into her mouth (except for spoons and food, of course), so I'm expecting more teeth any day now.

Sunday, August 9, 2009

New Record!

Lynnea has now been home from the hospital for 33 days, beating our old record of 31 days! This is a pretty exciting accomplishment! We have had a wonderful month at home. Ashlyn and Lynnea get along so well, and it's good to see them together. Both girls have been doing fun things this past week. Ashlyn has been enjoying rubber stamps -- she's a scrapbooker in the making, and she also enjoys playing dress-up -- the best thing she came up with this week was wearing Corey's socks because she was convinced that they fit her. It was pretty funny. Lynnea has been sitting in the high chair, mostly playing with toys while she's in there, but we have started offering her solid foods. She's tried pears and rice cereal (I think...I'm not really sure if she actually swallowed any of the rice cereal, but we offered it to her). She doesn't like eating solid foods, and she still gags anytime anything comes near her mouth, but we're taking it slow, and hopefully she'll figure this whole eating thing out sometime soon. We also tried putting her in her excersaucer for the first time, and she seemed to like that. During physical therapy this week, her therapist put her on her tummy for some tummy time (which she always hates), and Lynnea very promptly rolled herself back on to her back completely unassisted. She did this a couple of times, which is very exciting. She is also getting better at sitting up -- she still requires some support, but she's making a lot of progress.

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

Summer Fun












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

9 Months Old

Now Lynnea is nine months old. She weighs 15 pounds. She rolls side to side, but she doesn't roll over. She's starting to sit up with support, but she can't do it on her own yet. She's starting to tolerate being picked up from under her arms (rather than scooping her up like a newborn), and she tolerates being held up over my shoulder, which is a step towards her being more tolerant of "tummy time." She coos, and is starting to try to make a few different sounds, but she's not quite babbling yet. She's making progress.

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

Postponing Surgery

After much prayerful consideration, Corey and I decided let Lynnea stay at home with us and grow some more before having surgery, rather than having it tomorrow. We don't know when her surgery will be, but during her pre-op exam last Thursday, Dr. St. Louis was hoping that she would be healthy enough to wait at least another month.

Thursday, July 23, 2009

Decisions, Decisions. . .

We took Lynnea to the U of M for her pre-op exam this morning. She, of course, hated this, and wonders why we torture her like this all too often. We spoke to Dr. St. Louis about how Lynnea is doing, and the surgical plan. He is incredibly pleased with how well she is doing at the moment...so much so that he's not really sure that now is the best time to operate on her, but he is leaving the final decision up to us. He would kind of like us to wait -- waiting would give her the chance to grow a little bit more, it would give us all a little bit more of that much needed time at home as a family, and there is a very small chance that waiting could eliminate the need for him to reconstruct her pulmonary vein. The echocardiogram that she had done on July 13th showed some improvement in the pulmonary vein compared to the echo that she had done right after her last surgery. Dr. St. Louis does not have any explanation for this improvement -- he says that the last surgery that he did (the aortapexy) may have helped a little bit, though he still isn't really convinced that it's the cause for this improvement, or perhaps it is improving on its own simply because she is growing, and as she grows the spot that is narrow is growing too so that it's not so narrow anymore. Unfortunately, since he doesn't know what caused the slight improvement that was seen, it's impossible for him to predict whether, or not, the improvement will continue, or whether it will ever improve enough so that it doesn't need to be reconstructed. If we would go ahead and have her surgery on Wednesday, he would do both a bi-directional Glenn and pulmonary vein reconstruction. The problem with doing the vein reconstruction is that, once you start messing with a vein, you're always going to have to keep working on that vein because scar tissue and other issues continually arise. So, doing this now would pretty much guarantee more surgeries in the future on the pulmonary vein. But, the advantages to going ahead with the surgery now rather than waiting are that she's healthy, and her heart function looks pretty good, neither or which are guaranteed if we wait. We are supposed to think about what we want to do over the weekend and call him on Monday to let him know what we've decided.

Tuesday, July 21, 2009

Sisters

Ashlyn and Lynnea have enjoyed this time at home together. They have both decided that it's good to have a sister. Lynnea loves watching Ashlyn play with all of her toys. Ashlyn enjoys holding Lynnea's hand, reading to her, and sharing toys with her. They will both miss playing together when Lynnea goes back to the hospital for her next surgery.




Wednesday, July 15, 2009

The Next Surgery Date

Lynnea is scheduled to have her next heart surgery on Wednesday, July 29, at 7am. As always, the date and time is subject to change several times between now and then, but for now, this is when it's supposed to happen. We will try to keep her healthy until then, which should reduce the chance of needing to re-schedule.

Monday, July 13, 2009

Another Doctor Visit

Today Lynnea had another cardiology appointment at the U of M. She was a good girl during her echocardiogram (which she usually claims is absolute torture...today she was incredibly tolerant through most of it), and she still seems to think that Dr. Gruenstein is a really scary guy. Her echo remains unchanged, which is good news. We still don't have a surgery date for her next surgery, but Dr. Gruenstein said that he would remind Dr. St. Louis' office that it needs to be scheduled. We were very happy that there was no reason to admit her back into the hospital today (anytime that we are able to come home again after a clinic visit makes it a very good day).

Yesterday and today Megan took more pictures of my girls. Here are some of them -- they are still completely unedited, but very cute.












































Thursday, July 9, 2009

Life at Home

As always, it's good to be home, though being home isn't exactly easy. Lynnea has decided that if I am more than two feet away from her, then I am too far away, which is worth crying loudly about. Yes, I know that this behavior is pretty age appropriate, but unlike most babies, when she cries, she turns very blue, and her saturation levels drop frighteningly low, so I try not to walk away from her too often. Yep, she's one very spoiled baby. Ashlyn also needs my attention sometimes, which is only fair. Trying to balance between the two is challenging. For example, yesterday Ashlyn urgently announced that she needed to poop. So, I told her to go into the bathroom and began to follow her in to help her out. Well, Lynnea began to spit up, which she's been doing pretty much with every feeding again, so I had to go help her because she was choking. By the time I was done helping Lynnea, I heard Ashlyn yelling, "Mommy, clean up poop. Me need toilet paper." When I finally made it into the bathroom, there was a lovely piece of poop on the floor (still haven't figured out how it managed to miss the toilet) and the entire roll of toilet paper was unrolled on Ashlyn's lap. Yes, it's good to be at home.

Tuesday, July 7, 2009

Going Home...Again

I decided this morning that I will take Lynnea home. The discharge paperwork is being worked on, and we should be heading out sometime later today. I'm still not completely happy with Lynnea's condition, but again, if it's not going to get better until surgery, I'd rather not sit at the hospital for a few more weeks while we wait.

Monday, July 6, 2009

Maybe Tomorrow

OK, so I've decided that, if the doctors all still think Lynnea really will be fine at home, then I'm willing to give it a try. Mostly, I'm just really tired of being at the hospital, and, especially if the low saturation levels are simply an inevitable fact of life right now because of Lynnea's unique physiology, I would rather sit at home for the next three weeks than sit at the hospital. Dr. St. Louis is not really willing to operate on Lynnea again for at least three weeks, so, for now, there's nothing we can do to fix Lynnea's low saturation levels. Whenever we do end up actually going home, we will have oxygen at home available for us to use if her sat's drop and don't come back up on their own within a reasonable amount of time.

Sunday, July 5, 2009

Still Uncertain about Going Home

Lynnea continues to have lower saturation levels than I am really comfortable with. Today when her saturations dropped, we put her on a very small amount of oxygen to help her recover. The first time her sat's dropped today, this method worked, but this evening, the oxygen didn't seem to make much difference. We will talk to the doctors again in the morning about whether this is OK, and we will discuss whether we will be staying here for a while longer, or whether home is something we can look forward to in the near future.

Friday, July 3, 2009

Staying in the Hospital

This morning Dr. St. Louis said that he is comfortable with us going home whenever we want, even though Lynnea's sat's continue to dip pretty low. He believes that her sat's are simply going to be lower because she is beginning to outgrow the B-T shunt that was placed between her aorta and her pulmonary artery. The only solution for this would be to go ahead and do the Glenn procedure, but he's not willing to do that right now because he's afraid that she's still getting over the tail end of the cold bug that she came with this hospital stay. I told him that, even though I trust his judgement, I'm not really comfortable going home with her dropping her sat's like this, at least, not without some sort of very clear guidelines in place for when we should be really worried about her, and when it's OK for her to have such low sat's. He felt that this was reasonable, and he and the other cardiologists are working on getting a plan together. We'll hang out here for a few more days while they get things lined up for us (we'll probably be going home with oxygen. . . just as a precaution, Dr. St. Louis is adamant about not wanting her on oxygen all the time).

Talk of Home

Lynnea had her CT scan today. She needed to be sedated for it so that they could get clear pictures. She was sedated the last time she had a CT scan too, and she didn't have any problems. Unfortunately, today that was not the case. She decided that, initially while she was sedated, she didn't really want to breathe on her own. . . her sat's dropped to ridiculously low levels, and I'm pretty sure her heart rate also dipped frighteningly low, though I don't know for sure because the doctor and nurse stopped sharing her numbers out loud once she got to the point where they had to bag her. Fortunately, the sedative that was used was a short lasting drug, so within a few minutes she was fine again. The rest of the afternoon she was full of smiles, and during afternoon rounds, there was talk of probably going home tomorrow (Friday). Unfortunately the rest of her evening didn't go very well; her sat's dropped into the 50's, flirted with the 40's for awhile, and hung out in the low 60's most of the time. The doctors decided to not put her back on oxygen for now, and there's still a chance that they would be willing to send us home tomorrow, but the final decision will probably be left up to me, and I'm not entirely sure that I'm really comfortable taking her home if she's still dropping her sat's like that. So, we'll see; we might just hang out here over the weekend.

Wednesday, July 1, 2009

Wednesday




Most of the day, Lynnea was happy and full of smiles, though she still seems to need some Tylenol for pain. They tried to take her off from her oxygen today. . . it didn't go very well. Her saturation levels dropped into the 50's (and flirted with the 40's) and didn't show signs of coming back up on their own, so the oxygen was turned back on. The doctors don't have any great explanation for why she still seems to need the oxygen, which is frustrating for them, and for us. There is still a chance that her low saturations are due to her retaining fluid (she is extremely sensitive to fluid retention), so it might just take a couple extra doses of some diuretics to even things out again. There was some talk of possibly going home on Friday, but, of course, that will only happen if Lynnea is no longer needing oxygen support, so we're not getting our hopes up too high yet. They also started her back on her bolus feeds today -- two hours on, one hour off. She seems to be tolerating that just fine so far. Tomorrow, after her CT Scan (she can't eat anything for six hours before the scan because they will be sedating her for it) we will try increasing the rate a little on the bolus feeds and run them over an hour and a half instead of two hours.


Tuesday, June 30, 2009

8 Months Old

Lynnea is eight months old now. She had a pretty good day today. She was in a better mood than yesterday, so I'm guessing she's feeling a little bit better. This morning they pulled out her chest tube, and removed her A-line, and her IJ (the line in her neck through her jugular vein), so all she has now is one peripheral IV in her hand (which we're really hoping doesn't go bad before Thursday). She moved out of the PICU back over to 5A this afternoon, and she seems happy to be back (we're in the same room that we've been staying in for the past two weeks, so it probably feels pretty familiar to her). She had another echocardiogram today, but I haven't heard any results from that. She has a CT Scan scheduled for Thursday (which will require and IV, which is why we hope the one she has lasts that long), so we will be in the hospital at least until then. She is still on a tiny bit of oxygen support, but hopefully she won't need that for much longer.

Monday, June 29, 2009

Recovering

Lynnea spent the day recovering in the PICU. She will probably be moved out to the general floor tomorrow. She was taken off from the ventilator a couple hours after moving out of the OR up to the PICU. She is still on some oxygen support, but seems to be doing pretty well (she absolutely hates having the nasal cannula in again though). She's been pretty grumpy since she woke up from the anesthesia, but this isn't particularly surprising. This evening, she was feeling pretty spunky, and managed to ruin one of her peripheral IV's by kicking her legs so hard. She bled all over her blanket, but she's fine now. She still has her arterial line in, and her chest tube is still in. I believe the plan is to pull these sometime tomorrow. They have slowly re-started her G-tube feeding at a slow rate with unfortified breast milk. Hopefully she will manage to get some good rest overnight and have a good day tomorrow.