Uncle...

-- This was started on Saturday and not finished until very late Monday night ---

I'm at my wits end with everything and need help. Mike has been saying this for a while and has actually worked out the different type of help we need. The thing I need him to also work out is how we will pay for this help ;-) The thing he keeps reminding me is that if we don't get help, he'll be unable to keep things going with his career, which finally is picking up steam. His job is not one of a 40 work week, and never has been. Most often since I've known him, he's usually worked at least one day on the weekend, if not both and many evenings he doesn't get home until late. Or if he does come home, he's back up to his home office after dinner. It beats waiting for the phone to ring but it's a little tricky with our current situation.

He's an amazing Dad when he's got time. Another point of his is that if we have help, he'll be able to continue his businesses and to work on his future biz goals but still have a bit of time to be the parent he'd like to be. Instead of helping clean up, after finally putting the kids to bed, he can go up to work and not feel bad about me doing it all. He definitely pitches in more than most but then it puts him back in his work schedule, which is perpetually overloaded.

We are supposed to have a nurse working with us but so far we've had 5 different ones here and have been underwhelmed by most of them. Although they are all very nice, I'm not really sure what they add to the equation other than an extra set of hands to hold Ian while I'm trying to deal with Lila. I guess that's a lot. The one whom was here on Friday morning is supposed to be coming back on Monday to be working with us from now on but we'll see. When we were readmitted to the hospital, the nurse who had worked with us for two days we were home was now off of our case. Then she had another previous client get discharged so she had to go back with him. The others have just been a matter of availability. So last week we just had someone on Friday. The rest of the week was me and my Mother-in-law has come over quite a bit, although I can't really remember when because I'm so fried right now.

I know many have done so much more than I'm trying to. People have multiple kids and keep it together without help. But the combination of the extra care that Ian needs and Lila, being the lovely, energetic and attention needing little girl that she is, just puts me over the edge. Drawing up all of Ian's meds completely stresses me out. I've worked out a color-coded system that I'm just putting in place now, which will help. I just need a weeks worth drawn up at a time so I don't have to be doing it as I'm trying to administer them on time, while Lila needs her breathing treatment and breakfast and to get ready for preschool and Ian needs to nurse or get fed via his tube, and his breathing treatment, and they are both fussing. Just too much!

Lila has taken up fussing when Ian does. It's like a fussy choir. I really don't get it but I'm sure it's an attention thing for her and it's driving me nuts! She's actually fabulous with him, absolutely adores him, which is so sweet. But of course she doesn't get the fact that he needs a lot of attention and he's so very fragile. She's ready to have her Mommy back. To her I believe it's, I'm so close but still so far away.

I'm just so tired as well. Ian wakes throughout the night and wants to nurse, which is fabulous (that he wants to nurse that is) but absolutely burns me out. Mike and I have now worked it out where most often he takes the midnight feeding via the pump but Ian will usually wake up at 11:30 to nurse a bit anyway. Then I do the 3am and he wakes up before as well. Often I've not even used the pump because he nurses so much. When he wakes at 4am or 5am, I've just been bringing him into the bed with me to nuse so I can drift off a bit.

He's so very sweet, when he's not fussing of course. Today was a day of fussing pretty serious. I actually took Lila to two fun play outings. First was with a group of girl friends whom all have similar age kids. One of the wonderful girls hosted a big play date at her house. We were very late trying to get out of the house so we were only there for about 45 minutes but it was still nice to get out. When we returned, Mike was trying to calm Ian down. After I put both the kids down for a nap Mike told me to take one myself. Since Ian has been fussing instead of nursing, I had to pump and then couldn't fall asleep. Having a bit of quiet time with my eyes closed was nice though. Lila ended up not really napping and Mike eventually took them both on a walk.

When they returned, I took her to a birthday party of one of her preschool mates. That was fun. We don't do much with her school friends because since she's been in school I've most often either been sick, or in the hospital, etc. The families are really terrific and I'd love to bond with them more. Especially to connect Lila with the kids so she's more comfortable with them all.

What we realized very late in the evening was that because of the change of care between Mike & I, he missed his 3 pm meds. We called the doctor to figure out how to handle it. He was definitely more fussy and probably because of this. We worked it out to compensate for the miss.

So who knows what I need to get me through this. Mike feels it's an extra hand in the way of the nurses or help at night. That's the time when we are trying to get dinner on the table and then both kids baths and into bed with breathing treatments and meds. I'm not really sure. The big question is will it get better or worse with time. Mike tends to think better as Ian grows and gets stronger and possibly will require less meds, treatments, oxygen, etc. I'm really hoping he's right.

If you are reading this right now I know you are supportive of our situation and I thank you so much for that. What I really need, again, is positive thoughts, prayers or whatever you've got to send Ian's way. I keep looking at him and imagining all the bad diagnosis are wrong. Even though they've been verified by more than one doctor now, I'm still hoping he defeats the odds.

I know they say "be careful what you wish for" but what I really want is to one day in the next few years to hear my kids bicker over a toy or call to each other on the playground. To be able to talk about their day in a way that's clear to understand, over the dinner where we all are eating some yummy meal that Mike & I have prepared with the kids' help. To have things turn out more like "Plan A". Call me a dreamer...