Thursday, April 30, 2009

6 Months Old

Lynnea is 6 months old now. She's a bit behind developmentally, which comes as no surprise considering the amount of time she has spent laying in a hospital bed fighting for her life rather than learning to do things like roll over and sit up. But, it was fun watching her this afternoon doing some "normal baby" things -- she has a new fascination with tags on her blankets and stuffed animals, she desperately fights falling asleep because she would rather stay awake all the time, and she even looked like she might be close to rolling over sometime soon. We're hoping for at least a few more good weeks at home before she has to go back to the hospital, but really we'll just enjoy any amount of time we get to enjoy here at home.

Monday, April 27, 2009

It's Been Three Weeks!

Wow, we've been home now for three whole weeks! This is the longest that Lynnea has ever been at home, so this is really exciting. So far, she seems to be doing fairly well, although I've been noticing some extra fussiness with some of her feedings, particularly in the evenings. This evening we actually had to stop a feeding half-way through because she was crying and seemed to be in pain. We'll see how the overnight drip goes -- hopefully, it will go just fine.

Thursday, April 23, 2009

More Pictures

Here are some more of the pictures that Megan took on Sunday.
Ashlyn had another great "dry" day. Lynnea also had a good day. During the night last night, when I went to lay Lynnea down in her crib, I managed to accidentally pull out her G-tube. Corey put it back in and this morning we had one of the Home Health nurses come and make sure that it was OK. It was fine. Actually, I'm pretty sure that it wasn't in right before I pulled it out because it came out way too easily, so this is probably all for the best. That's the only excitement that we've had for the day.

Wednesday, April 22, 2009

Way to Go Ashlyn!

Ashlyn had her first full day without a diaper, wearing regular underwear and pants (except during her nap) without any accidents. She stayed dry all day! She's a superstar. :-)

Lynnea also had a good day. She enjoyed playing on the floor -- she's doing more grasping of objects now, which is nice. Today she was also getting very good at sticking her fingers in her mouth, which would then cause her to gag. This frustrated her, but she insisted on continuing to put those long fingers in her mouth, so I didn't have a whole lot of sympathy for her when she gagged. This evening she seemed to have a difficult tolerating one of her feedings and had an hour or so of inconsolable crying, which had us worried, but in the end she finally calmed down and did fine the rest of the evening.

Monday, April 20, 2009

Doctor Visit at the U of M

Yesterday Megan took pictures of Ashlyn and Lynnea again -- some of them were very cute and I will post more after she edits more of them.

Today Lynnea had a very busy day at the U of M. At 9am she had an echocardiogram, 10:15 she had an appointment with Dr. Gruenstein, 1:00 she had physical therapy, 2:00 she had occupational therapy, and after occupational therapy she had her G-tube button changed because the one she had was leaky. Lynnea hated the echo (as usual), was terrified of Dr. Gruenstein (according to her today he is the scariest man alive), did not enjoy physical therapy, refused to leave Mom's arms for occupational therapy, and found that having her button changed was pretty unpleasant even though it only took a minute to do. That's her version of the day. I personally thought it was a pretty good day -- after all, we are at home again, the doctors did not find any reasons to hospitalize her, which is always good news. Dr. Gruenstein said that her echo showed that things still look pretty good as far as her heart function goes, and he feels that she shouldn't need to be seen at the U of M again for an entire month. At that time we'll talk more about when she will need her next surgery, but ideally she will be fine over the next month and will continue to grow and heal from everything she has had done so far before they need to move ahead and do anything else to her. The possibility of staying home for another whole month is pretty exciting. I just hope that Lynnea decides to cooperate with this plan.

Saturday, April 18, 2009

Just Hanging Out

Lynnea has had a little bit of a cold the past few days, but today seemed to be doing better. She really seems to like life at home. She enjoys lounging around in the boppy pillow watching TV. She also likes looking at her book while sitting in her swing, but the plot is a little lacking and sometimes puts her to sleep.

Ashlyn had a good day today. It was day two of potty training and she was very successful and proud of herself. The challenge now is continuing to be consistent with her regardless of the situation (meaning if we have to go back to the hospital sometime soon).

Wednesday, April 15, 2009

Another Wardrobe Malfunction

Lynnea's doctor's appointment yesterday went about as can be expected: Dr. Ferry asked if I had any questions, and when I did, he said he would call the U of M and ask them because he really has no idea how to answer any questions about Lynnea. We like him as a doctor, but Lynnea is kind of out of his league, so these little "follow-up after hospitalization" visits really accomplish nothing more than can be accomplished by the Home Health Care nurse that stops by twice a week. After the doctor visit, Lynnea was very fussy and inconsolable, so we ended up calling the hospital ourselves because we were pretty sure her mood was due to withdrawal, so the doctor at the hospital (I don't remember which member of the cardiology team Corey talked to, but they all know Lynnea quite well, so it didn't really matter) said that we could continue giving her Ativan for a few more days. Other than that, she seems to be doing OK.
Ashlyn, on the other hand, had what I would call another wardrobe malfunction yesterday. She was wearing some cute overalls, and for some reason, she thought it would be a good idea to slide the straps off from her arms, despite me telling her that if she did that, her pants would fall down. It was pretty funny -- she looked completely confused when, lo and behold, her pants started to fall down, so she desperately tried to pull them back up a few times before taking them off completely and just running around in her shirt and diaper for the rest of the day (she refused to let me help her put her pants back on).

Monday, April 13, 2009

Home for a Whole Week

Lynnea has been at home now for a whole week. It's been a good week. She still seems to be doing OK, though the past few nights have been a bit rough -- we're pretty sure it's withdrawal. She has a doctor's appointment tomorrow with our family doctor, so we'll ask him about whether or not there's any way to ween her a little more slowly off from her Ativan.

Sunday, April 12, 2009

Happy Easter!

It was wonderful to get to celebrate Easter together as a family. Last night Ashlyn got to decorate eggs for the first time. She loved it! We should have boiled more eggs! This morning, Corey, Ashlyn and I went to church together as a family, while Lynnea stayed with Grandma and Grandpa Bergmann. Then we all ate lunch with the Bergmanns, and went over to Grandma and Grandpa Callison's house for supper. Overall it was a nice day. Lynnea was a bit crabbier than usual, but this might be due to the fact that both her Methadone and Ativan we switched to once a day yesterday, instead of twice a day. She will be completely weened off from both of them on Tuesday. We'll see how things go from there.

Thursday, April 9, 2009

Living at Home

I've managed to get Lynnea's medication schedule a bit more manageable. She seems to enjoy being at home with us. She especially likes Ashlyn. Ashlyn has been a super helper -- she gives Lynnea her Nuk and pets her head when she cries, and she makes sure that Lynnea always has plenty of toys to play with, it's very sweet. Ashlyn has also been great about not touching Lynnea's feeding pump and stuff, which is nice. Lynnea was super fussy yesterday, which I thought might have been a sign of withdrawal, but she had a better day today, so maybe things are OK. She still gets tired really easy, and she's been having a very difficult time drinking off from a bottle (she struggled with this while still in the hospital, but she has been struggling even more at home).

Tuesday, April 7, 2009

Happy to be Home

Lynnea was released from the hospital yesterday evening; I apologize for not posting last night with this news, but things were kind of busy around here. She is doing well, and seems to be happy to be at home (even though I don't think that she realizes that this is home). Her lifetime totals are now: 123 hospital days, 34 at home days. We're hoping to make up some ground in the at home days category this time, but yesterday Dr. Kochilas seemed to think that she would probably need her next heart surgery in 6-8 weeks, if not sooner. The results on the echocardiogram she had done on Friday showed that her heart function had certainly improved from what it had been prior to her most recent surgery (the aortic augmentation) but there is still a spot with some narrowing and/or blockage (they're not completely sure which) that concerns them.

One of the most frustrating things about being discharged this time is the difference between my definition of "manageable" and the doctors definition. What I mean is that, the main reason we spent last week in the hospital was so that they could get her medications and feeding schedule down to something that would be manageable when we got home. Well, this is what her current schedule looks like:
6am -- give meds
7 am -- start a bolus feeding
8am -- meds
10am -- feeding
11am -- meds
1pm -- feeding
2pm -- meds
4pm -- feeding
6pm -- meds
7pm -- feeding
8pm -- meds
10pm -- start her overnight drip feeding
11pm -- meds
2am -- meds, and refill feeding bag
3am -- change very wet diaper because 2am med was a diuretic
6am -- meds & stop drip feeding

Ummm. . . yeah, that's not exactly what I call user-friendly, especially considering that most of her medications are either once a day, or twice a day -- every 12 hours, and there is absolutely no reason why most of them can't be given together, so if the doctors had communicated better (and given even an iota of thought to how incredibly ridiculous this schedule is for someone to try to run at home) they could have had her only taking medication 4 times each day. I'm in the process now of adjusting the medication times to get Lynnea on a better schedule, but some of her medications are ones that you really can't just abruptly change the dosing schedule (like Digoxin and Methadone) so this is going to take a few days. In the mean time, I am also in the process of trying to sort through Lynnea's clothes because most of the stuff she was wearing prior to this hospitalization don't fit anymore (imagine that, my baby grew over the past 10 weeks). To make this problem even more difficult, she still doesn't really like to be handled a whole lot, so going through and actually trying a bunch of clothes on her at any one time is completely out of the question. Oh well, no one ever said the transition home would be easy. . . at least we're at home.

Sunday, April 5, 2009

Still Hoping to Go Home Tomorrow

The plan is still to go home sometime tomorrow. Lynnea had an OK day today, but again she has been very fussy this evening, difficult to console, and she has been randomly breaking out in cold sweats throughout the day. I attempted to bring these concerns up in rounds this morning, but failed to get any useful feedback about any of it. I will voice my concerns again tomorrow, and we'll see where things go from there.

Obviously, if we don't get to leave tomorrow, I will be pretty disappointed because it is high time that we all get to spend some time at home as a family. Last night here during dinner, Ashlyn announced that she was sick, and therefore needed to stay at the hospital. When I asked her which part of her was sick, she looked at me very seriously and replied, "fingernail polish hurt." Upon close inspection of her pink fingernail polish, I saw a potential hangnail. I then had to break the sad news to her that her illness was not severe enough to warrant staying in the hospital. Even though all of this was kind of funny, it's sad to think about how much she really misses being home with us.

Saturday, April 4, 2009

Another Saturday at the Hospital

As of this morning, the doctors felt that Lynnea is still on track for going home on Monday. It is really nice to have most of her tubes, cords, and wires disconnected at least some of the time now. She and I were even able to take a walk over to the PICU to visit some of her favorite nurses. They were very excited about the progress that she has made, and she enjoyed seeing them too. This evening Lynnea has been fussier than usual, and I am beginning to fear that she may not be tolerating her feedings as well as we had hoped. But then again, maybe I'm just being paranoid. Time will tell.

Friday, April 3, 2009

Talk of Going Home

The tentative plan is that we will be discharged on Monday. Obviously, we all know by now that things in the hospital are never written in stone and have a tendency to change several times, but barring any surprises, we should get to leave as scheduled (although, Lynnea had another echo done this morning, and I still haven't heard any sort of official results from it. . . ). Lynnea did well during physical therapy today, and pretty well during speech therapy, though drinking from a bottle is still pretty tough for her and takes a lot of energy. The worst part of her day was when one of the surgical nurses came to remove half of the stitches in her chest incision site. Dr. St. Louis used glue and stitches this time when he closed her up, rather than staples like he did the last two times, because he really wanted to make sure that there were no gaping holes that could get infected. She will have the rest of the stitches removed before we go home on Monday. At this point, it looks like we're going home with the PICC line still in place (since no one has mentioned taking it out) so sometime over the weekend I will receive some training on how to take care of it (it has to be flushed twice a day and then Heparin locked because we're not actually using it to run any medications through right now).

Thursday, April 2, 2009

Sleepy Baby

Lynnea had another pretty uneventful day. She has been sleeping a lot the past few days, but I'm not sure if this is anything to be concerned about. She continues to look good overall. We still don't have any definite plan for discharge -- she could be home as early as this weekend, or as late as the end of next week, depending on who you ask. Today Ashlyn spent a majority of the day here with me, and while we were watching the Wiggles together, I discovered that Lynnea also seems to be a fan. She and Ashlyn both kept their eyes glued to the TV for the entire DVD (I had hoped that Ashlyn would actually fall asleep and take a nap, but that didn't happen).

Wednesday, April 1, 2009

Still Progressing

Lynnea had another day full of smiles today. This morning her speech therapist decided that a Swallow Study was needed to determine why Lynnea is having a hard time swallowing without choking when she tries to suck off from a nipple. The initial results look like for now we're going to have to give her thickened breast milk (about the consistency of syrup) because she can't handle thin liquids at this time. As much as I would like her to be taking at least some food orally before we go home, this isn't technically something that would keep us here longer because she can always be fed through her G-tube (which will be used for a continuous drip overnight regardless of what she's able to handle orally during the day). She continues to do well with the weening of her narcotics -- still no obvious signs of withdrawal, which is really nice.