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.

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.

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.

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.

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.

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.

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.

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.

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.

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.