Thursday, September 25, 2008

Waiting, Waiting, Waiting

Sorry it's been so long since the last post. Rob's been out of town, and I've been spending a lot more time at the hospital this week with Maddy's ad lib feedings, so we haven't been as diligent in updating the blog.

The babies are officially 40 weeks old today - term! Happy Birthday babies!

The Maddy Update
Maddy is doing pretty well on her ad lib feeding, but started having bradys with feeding again on Sunday. This is just a sign that she's using a lot of her energy to eat all her meals herself, and hopefully the bradys will slow down and go away soon. Maddy is gaining weight, which is good, though not large amounts. She did pull slightly ahead of Milo in weight this week (6 lbs, 8 oz), as she gets more food than he does now, and he is still on his diuretics. Maddy is also still taking down relatively large amounts of food. She had a 115 ml (nearly 4 oz) bottle on Monday. Unfortunately when she takes down that much, she is absolutley zonked out and often won't wake up for her 4 hour feeding window that the NICU requires. Then sometimes when she's woken to eat, she doesn't do as well and bradys a bit. Ultimately, she needs to continue to eat her food on her own, gain weight, and either stop having bradys or have them diminish to the point of being an anomoly rather than a regular occurrence. We thought perhaps she would come home this week, but now it looks like we need to shift our hopes to next week. Most of the nurses think that's pretty reasonable to hope for, so cross your fingers.

The Milo Update
Milo is doing okay, too, though he is still a little ways off from taking all his feeds by mouth. He doesn't have the strength to finish all his feeds this way every time, or do more than every other feed. He seems to like breastfeeding better than bottle feeding, due in part to the fact that he doesn't seem to like the taste of the fortifier he needs to have in his milk. (The babies went off the Prolacta study after they turned 90 days old.) He just needs a bit more time to grow and get stronger. He's weighing in at just under Maddy.

Milo's liver values are continuing to improve, and his diuretics are working to keep his lungs clear. The little guy had an eye exam yesterday for his retinopathy, which has progressed beyond the first stage to the second stage. He will have another exam today with a retinopathy specialist to determine if it is progressing any further. We're hopeful it will not progress much further, and he will not need laser surgery to stop abnormal growth and scar tissue from forming in his eye. Thankfully the area where his retinopathy is occurring is in the peripheral zone of the eye, not in the center, and laser surgery is very successful in minimizing the issues associated with the abnormal growth. The laser surgery is also done right at the NICU, so he wouldn't have to be transferred anywhere. If worse comes to worse, Milo might be nearsighted at an earlier age if his retinopathy progresses, or need some additional corrective eyewear to help his eye development while his grows. With Mom and Dad's bad eye genes and nearsightedness, the kids were probably bound to need glasses anyway, but here's hoping it doesn't go beyond that.

Milo's timeline for coming home is obviously longer than Maddy's, as he is a bit more delicate right now. It's hard to predict when it might be, as premature babies can be notoriously unpredictable. How many times have we done a blog post saying it will be so many number of weeks or days before something happens, only to correct ourselves in the next post? Basically Milo needs to do the same thing Maddy does: eat by himself, gain weight, and not have bradys. He can come home on his liver medication and diuretics, so his feeding issues are all that's left. It can be agonizingly slow at this stage, and very frustrating, but sometimes babies also turn a corner quickly and you're there before you know it. We're hoping for that!


Heather said...

BIG, BIG hugs to you and Rob! You guys are doing an amazing job dealing with everything that comes. M&M are so lucky to have such awesome parents!

Love to all,

Sarah V said...

I am so amazed by how positive you have remained through this whole ordeal. While it is wonderful that the babies are making such progress, I know it has also been beyond difficult. I am imagining the struggle of being almost home but not quite, worrying about things to come, and I am just awestruck by your grace and composure through it all. That must be where you babies found their strength!

Sending the best wishes that the homecoming (and good health) comes as soon as can be for both your babies.