Constant rollercoaster

Mike & I are waiting to go back to the hospital until at least tomorrow. We are both feeling much better than yesterday but don't want to chance it. We'll be super lucky if we are still feeling better tomorrow. That will be a record turnaround from a bit of a cold. Might be due to the fact that I've been taking Zicam, Elderberry and drinking EmergenC every day since Ian was born in fear of getting sick. We also have been using the sinus flush kit the last couple of days which seems to help.

Two days without seeing Ian has been very difficult and strange. Though two days with Lila feels so good, even though by the end of the day we're all ready to loose it. She's an amazing girl and I love her so much. Today was lovely, after the doctor appointment we spent the afternoon playing outside with her water table and little pool. But she's almost 3 and she's going through what I assume is the terrible 2's. Not the whole day but definitely at the end when it's time to go to bed, when we are all exhausted and at our wits end. She's also decided that she no longer wants to take a nap. This little break is really what we all need right now and, although we'll keep trying, it's not looking promising.

Of course with Ian, just when we think things are moving in a positive direction, there are more setbacks. I was so excited the other day when Mike sent me the photo of him with a bottle in his mouth. The nurse had said he only took a bit but for a later feed that evening, the nurse gave him the whole bottle and he took it. Granted, I believe it was only 20 cc's but still, I was pretty thrilled that he was swallowing. Since then, it doesn't seem he's interested. While this might be normal baby behavior of a child that has not yet had a bottle or anything but an IV of clear liquid, and recently milk via a tube going straight to his tummy.

With Ian I can't help but feel they kind of gave up because of his Polymicrogyria. I'm sure they are erring on the side of caution. Of course they don't want him to end up with an infection due to the milk going into his lungs instead of his stomach, but I still think they'd try harder if they didn't know of his brain condition which says that he might not be able to swallow. They are going to set up a swallow test, which I've heard is horrible. In a way, I'd just rather them keep trying like they would a "normal" baby. Maybe they could have the nurse that got him to take the whole thing try again.

He's also slow to be weaned from the Milrinone, which concerns us. They have him on a low dose, .4, but it seems every time they try to wean him, he has trouble. Today it was down to .35 and seemed to be doing okay in the middle of the day but by evening, the nurse said they bumped him back up. At the same time, they tried to wean him from his oxygen and had to put that back on as well. He's so sensitive, I kind of wish they'd just do one thing at a time right now, especially since there are only a few more things to wean.

As far as how Mike, me and Lila are doing, it's touchy. It feels like we're all on the edge of loosing it at any time and that's tough. This is why I just have trouble talking to anyone right now, especially on the phone. It's difficult to answer "How are you doing?" and I definitely can't answer "How's Ian doing?". A very good friend of mine called today when I was on the way back from the doctor with Lila. She's so sweet and supportive but she asked the questions, and I just started to loose it and had to go. It's horrible that I'm like this. I'm also loosing my patience with Lila by the end of the day, and I'm often short with Mike. Both things I need to work on, and fast.

Speaking of Lila, again, no real answers for why she has this horrible cough that she's had off and on for over a year. It could be allergies, it could be a sinus infection, it could be acid reflux, there's just no answer and that drives us nuts! I think it's time we go to yet another doctor. I'll ask about a Pulmonologist at UCLA when I'm up there tomorrow. The poor girl sounds absolutely horrible, especially when she's trying to sleep. No wonder she doesn't want to nap! We've got her on a breathing treatment 1-3 times a day. So when I'm pumping, she's doing her breathing treatment. We're quite a pair.

To top things off, I got a parking ticket today! Lila's allergy doctor kept us waiting in the room about 40 minutes. Try that with a 2 year old. She was actually really good until the doctor finally came into the room, then she started acting up a bit needing more attention. Not good on my patience, especially when I didn't get any real answers.

I'll hope for a better day tomorrow. If I can see him again I'm sure it will help both of us.