Tuesday, June 30, 2009

Eye See, Eye See

We went to see Izzy’s eye doctor yesterday, and she got a great report. Doc said both eyes look fantastic, and we don’t need to go back for four weeks. Sounds like we’ll see him once a month for the next two months. After that, we should be able to space out appointments further. It is quite a production to get this little girl out the door. First of all, she is on oxygen, which requires us to take a little travel tank everywhere we go. Because of the oxygen, she has a pulse/ oxygen monitor on her foot, and lastly, she has an apnea monitor that she wears around her chest. So, wherever Izzy goes, her oxygen tank and two monitors, with their constantly tangled cords follow. She looks like a puppet on strings. She’s a very sweet puppet though, and hopefully it won’t be for too much longer.

We did have a little more stress than normal added to our day yesterday. Isabelle choked during two of her feedings yesterday, causing her heart rate to drop low enough to set off her monitors. She didn’t turn blue or anything like she used to do in the hospital, but we are very concerned that she may still be aspirating. We are already doing everything we can do to thicken her food, so if she is still aspirating, the next step may be to get a feeding tube. We called her pedi after the second spell yesterday, and they said since we already have a weight check appointment tomorrow morning, just watch her today, and they’ll check her out tomorrow. She already has a second swallow study scheduled at Cook Children’s, but it isn’t until September. Hopefully her doctor will be able to get us in sooner. I have mixed feelings about the swallow study. If it shows she’s still aspirating, we could be looking at surgery. As much as that scares me, she could end up getting pneumonia from aspirating, if that’s the problem. So, feedings are still super stressful around here. She’s done much better today, so I’m praying that yesterday was just an off day. She did get eye drops to dilate her eyes before her exam yesterday, and she has reacted badly to those drops in the NICU, so maybe that’s what the problem was. Hopefully her doctor will have some thoughts on this tomorrow.

Isabelle still isn’t in love with her bassinet, but we’ll keep trying. She slept from 11pm – 9am, only waking to eat last night, but I’m embarrassed to admit that all that sleeping was done on the couch...on her Mommy and Daddy’s chest. She’s been awake ALL day today, so maybe this means she will sleep tonight??? Fingers crossed…

The point of changing to this blog was to have a family blog instead of just an Isabelle blog, but as you can imagine, she’s our world right now, and I have a feeling that won’t change anytime soon. ;-) I’m sure you guys don’t mind. We all know who the star of the family is….Miss Izzy!!!

Saturday, June 27, 2009

Home at Last

We’ve been living together as a family of three now for an entire week, and I can admit that this is a much harder adjustment than I imagined. All I’ve prayed for over the last four months was for Isabelle to come home with us, safe at last. Now I find myself praying for strength, energy, patience, sleep, etc.

Isabelle is doing well at home. She now weighs 7 pounds 7 ounces – that’s an ounce a day so far. She has also been tolerating even less oxygen than she was getting in the hospital, which we are very excited about. We were taking the cannula completely off of her face, but we decided to just lower the setting gradually and see if that works better. She came home on 1/8 of a liter, and she is currently on 1/16. If she can handle it for a few days, we’ll change it to 1/32, and then hopefully start taking it off throughout the day until she’s ready to fork it over for good.

She did develop a little cough and was wheezing a bit, so we took her to see her pediatrician, and he gave her a breathing treatment. He said her lungs sounded much better after the treatment, so we are giving her breathing treatments at home every 4-6 hours. Hopefully the treatments will do the trick and this won’t develop into anything ugly.

Our only problem has been lack of sleep, which I’m sure is not a surprise to anyone. Isabelle really loves being held, and it may be my fault. Actually, I’m sure it’s my fault. When I visited her daily at the hospital, I would hold her just about the entire time I was there, which was often a good chunk of the day. I missed out on so much time with her, that all I wanted to do was cuddle with her as much as I possibly could. Well, now Izzy wants nothing to do with her bassinet, and the only way we can get her to sleep for any decent length of time is by holding her. We’ll wait until she is sound asleep, then slowly walk over to the bassinet. We try to hold her close to us all the way down to her bed, and slowly move our hands away. She is no fool. She knows she is no longer being held, and within a few minutes, sometimes even seconds, she’s screaming. We can only make so many attempts at this game during the middle of the night before pure exhaustion sets in and we’re sleeping on the couch, holding her on our chest.
We’ve tried everything – white noise, classical music, swaddling, a bouncy/vibrating chair, diaper change, bottle, bath, Mylicon, etc. I’ve read all that I can find online, and the consensus seems to be that newborns shouldn’t be left alone to “cry it out.” As a new mom, I’m a little confused. I’m not supposed to let her cry, and I’m not supposed to bring her into bed with me. So…do I really just sleep on the couch with her on my chest for three-four months? There has to be a better solution. We keep trying to put her down in her bed when she falls asleep, day and night. Tonight, she lasted 45 minutes in her bed before she cried and Daddy picked her up. Seems pathetic, but it's progress...

The one thing that makes all of this okay is that she is here, alive, with us. I feel so guilty even getting frustrated at not getting sleep when I think about all that my poor baby has gone through to get to this point. She is truly a miracle, and I suppose she has earned every bit of spoiling she gets, so until I find something else that works, she will be held.