Tough adjustment.

Well the first few days at home with both kids has been quite a challenge. It is lovely to have Ian home, and I don't want to jinx that, but it's quite a handful to care for both of them. Lila just loves her little brother but definitely wants time with her Mommy again. She lost it yesterday completely and just cried and cried over nothing. She's had a similar outburst one other time a couple of weeks ago. I just held her tight. It seemed like months of emotions trapped in ready to bust free. I've been crying a lot lately as well. Maybe the whole thing is finally getting to me or maybe my hormones are just crashing. Probably a combo of both.

I miss my little girl. I do love my sweet little boy as well but I really miss my time with Lila. Sometimes it seems as if she's a stranger to me. My sweet girl that I spent 24/7 with before that unfortunate day in February when I began my hospital connection. (It really feels as if I'm attached by an umbilical cord to that place. I can only go so far away until it snaps me back) We used to just do whatever we felt like at the moment. We went to music class, Emerson, the park, the beach, took long walks with the dog and the neighbors. There were many times when I would just stop and look at her, reveling in the moment. Little did I know how good we really had it. I'm sure this is normal for any Mom of a second child, it's just exasperated by our end of pregnancy experience and of course, Ian's health.

One of the things that drives my nuts are the literal cords that tie us to a small circumference around his machines. I never knew what a luxury it was to be able to just walk to the bathroom. Every time I get up to move with him, I'm reminded of his condition. Just as I get into a mode of feeling that he's just a "normal healthy baby boy" I'm reminded he's not by the limit of his tubing. Not to mention the flurry of meds we have to draw up and administer 4 times a day and his breathing treatment we have to administer 2 times a day.

Then there's the feeding. He began to be so great at nursing that it was quite perplexing as to how much formula to give at each feeding. He was nursing a ton and it seemed as if I was over-filling him. It was driving me nuts because he'd be so fussy as I was gavaging (feeding him via the g-tube in his tummy) him with formula after nursing. Actually, he's quite often fussy whenever we gavage him which makes it a challenge to get it in. Eventually I had a conversation with the surgeon who put in the G-tube and he said that I could just try nursing during the day and gavaging at night. Sounded good to me! Of course when we were back home, he slowed down on the nursing. He gets too distracted or falls asleep. I can't figure out if it's just the environment that's more interesting and comfortable or if it's the fact that he was on more oxygen for most of the time we were last at the hospital. Whatever the reason, it drives me nuts! Now it's back to pumping, gavaging, and trying desperately to nurse an adequate amount. At the same time I'm leaking all over the place whenever he cries, which is often.

One of the nurses asked me how important it was to breast feed. If I stopped, I'd get more rest and have less stress and anxiety. My answer is, of course for the health benefits I feel it's important. But even more important is that they've told me my little guy might not be able to suck, swallow and breathe as a symptom of his brain malformation. The neurologist said what he's doing now is being controlled by his brain stem, but once his cerebral cortex kicks in he might not be able to do it. I figure if I keep him working on it as much as possible, it will be set in his brain and as the transition happens hopefully he won't loose the ability to do it.

So we will keep working on getting our systems in place and our groove going. It will be a tough adjustment to say the least. So far, it's been driving me nuts but I'm hanging in there, albeit by a thread. If we can just get through the first six months, hopefully we'll be off to a better place. Of course, we don't know what to expect at that point but we're hoping for the best.

Right now, I'm pumping before heading off the the ER again for a chest x-ray. He's been satting low as of last night and we upped his oxygen again. It's not as bad as before but still flexuating enough to make me nervous. I think I'm going to have Mike stay with Lila and just head up by myself. No point in us both dealing with it and Lila really needs us right now. The doctor said she would try to get us out in a reasonable amount of time if it's not too serious. Will update later.