Tuesday, May 29, 2007

Mikey has really landed well.

We've seen such an improvement in him since leaving the hospital - he's almost a different kid - really. At night you can spy him sleeping all curled up with his legs loose and pulled up where they should be instead of tight and flexed. His motions are smoother - and he reacts to things he sees in his environment, like his stuffed animals. So much nicer.

Anyone that questions whether or not it was a good idea to push to get him out needs to check their sanity at the door.

A week and a half home. Strrreeetttccchhhhhhhh. Yaaaaaaaawwwwwnnnnn.

Overnights are fun! :)

Mikey's doing really really good - Mommy and Daddy are just tired. What's new, we have a newborn, right?

We're still trying to find at least one more night nurse to help cover us so we can go to bed at night. Shell's been up till midnight or 1 most of the time and then I come down and take over and stay up till 7pm or so and get back up at midnight again...

Mikey's had a lot of visitors since he's been home - here's some of the highlights....

Saturday, May 19, 2007

Lucy, I'm home! What's for deeeenner?

Mikey came home to his family yesterday afternoon, after exactly 90 days in intensive care. :) He was greeted by his sisters and his Aunt Audra with wide open arms. While we were leaving the hospital, packing up and all, he had a hard time with the car seat, so it took longer to get down to the doors than to drive home. Once he settled into the car, he was calm as could be. He had such an amazing day at home. You can tell he knows he belongs here - he relaxed and had a very very calm day.

We had help on the overnight, so we actually caught a few hours sleep. Of course Shell was up at 4am to check on him, but he was sleeping well. He got a lot more sleep last night than we did! He went from 11pm to about 8:30am without an issue! That's my boy, for sure.

It was nice to have tears of unabashed, unbridled joy for the first time in more than three months.

As we suspected, his sisters couldn't leave his side most of the day, except when Shell busted out Rita's roll-around ice cream maker. :) The ice cream was actually really, really good, too!

All of this brings me to a humble, peaceful thank you to all of you wonderful people out there who have helped bring our son home to us. His Aunts and his Uncles, his grandparents, our dear, dear friends, the folks at SKIP of NY, Erie County, Albany (who moved really, really fast for us) and the nurses at the hospitals that really took a shine to Mikey. We have learned that hospital care and "the system" can really leave people behind, and while we ruffled many feathers in our diligence to bring him home, those people who saw that our efforts were for the right reasons made our lives so much easier. We brought our son home faster than everyone thought possible, and it was the folks that realized we weren't kidding around about getting him out that really pitched in and helped us out.

To all of you that fortunately haven't had to experience long term hospital stays for people you love, please know that while it's not all bad, you have to advocate for your children, your spouse, your friend, your loved one, because they may not be able to. You have to stay the extra hours to see that doctor, spend time during shift change and introduce yourself to the next nurse, etc. It seems that when hospital folks know how loved and looked after their patient is, the better care they provide. I know that we've made a positive impact in Mikey's life and his care by positively showing we're involved, concerned and able to do whatever we needed to do. Most days we had no idea how we'd get the kids watched, supper on the table, medicine given, appointments made - and without the help and love and support from our friends and family wouldn't have been able to do - but we found a way.

On a final note for today - I know many of you have been concerned about me during this time, having both my newborn son and my amazing, beautiful, powerful wife in the hospital. Your love and support have NOT gone unnoticed. Every single one of you helped me fulfill a promise I made to Michelle when I asked her to fight for her very life - that I would bring them both home. As foolish as that promise was in light of the odds we faced, without all of you propping me up and helping me, I would have failed to deliver.

In that, it is truly all of you that have reunited this family of five - a carrot top who can barely walk, with a sippy cup of milk, a little blue eyed blonde with shoes on wrong 'cause she likes to dress herself, a brave little boy with a fishin' cap on and the most beautiful girl, holding all three of them - and made their Daddy feel whole again.

Thank you from the bottom of my heart.

The struggle isn't over and we're still putting nursing together and finding a way to make it work, but it's easier because of all the love and help we've had.

Friday, May 11, 2007

So you're looking for a Mikey fix are you?

I have to apologize to all of you that tune into Mikeyslove on a regular basis - I just got mired in the details of life again. I've really had to start working again, as well as continue to push, push, push in all the places we know of to get Mikey home. To this last, I have to give Shell all the credit in the world. Any of you that know her, undoubtedly know of her extreme focus in life. Sometimes what she's focused on might make you really wonder, but as a mother, I've always had such amazing faith in her.

When I was alone with Shell in her ICU room, we had dozens of conversations that she doesn't recall now - and if they weren't so beautiful, I'd honestly be happy she remembered none of what happened. One that really comes to mind now is about having to live without her - something she actually brought up to me. On her mind was how I would take care of the girls, and making sure they stayed on their routines, went to dance, played softball, and did the things that she had built around their lives as comforts, challenges, chances to learn and live. She asked me several times if I could do it on my own without her, because she didn't know if she'd be able to fight more; it seemed so endless to her.

I told her I'd honor every request she had, only with her right by my side and that I would not give in to the idea that she might not be here with me. I had a baby in an ICU that as much as I love him so deeply, I also know that without her I'm half the father I am today.

I honestly know deep down that Shell reared back and threw herself another fastball to get out of the inning when she realized both that I wasn't giving up on her, and her family needed her. At the time some of her expressions were sort of muted by the tubes and being tired and in pain. But the resolve on her face when we agreed that she'd fight was overwhelming. I felt so weak and small next to her, yet she was the one that couldn't get out of the bed. I felt crippled by everything happening around me and she seemed so damn tough. Those of you reading this - next time you think you shouldn't go exercise, shouldn't get a better grade, get a better job, learn something new, work harder with your kids - rear back and throw your best stuff. That's the time to pull out all the stops. Mikey certainly is. My wife has taught me so much, but this lesson is one of the more important.

In that same spirit, I have to tell you that the fortunes we've had with finding some nursing and springing Mikey from his jail cell are all to her credit. Her story, her spirit, her fight have all brought us further than anyone thought we could get in this timeframe. I owe so much to her - I'm just so thankful she's here to help put our family back together again.

Here's where we're at:

We have an afternoon/evening nurse, from 3-11pm, 7 days a week. We have a night nurse from 11pm to 7am, 4 days a week. We have one nurse that has gone after her own medicaid number to help us out and she's going to help 40 hours a month to help with appointments and day time things.

We have Early Intervention setting up 5 days a week of OT, PT and 3 days of Speech pathology (mostly for swallowing problems) and a special ed teacher every other week for a day.

That comes to 25 and a half visits a week by medical and therapeutic professionals into our home! Does anyone know how to install a revolving door? :)-

We have a best possible discharge date of next Friday - the 18th of May, Mikey's 3 month Birthday. We're waiting for news from Albany on the paperwork, but as we understand it, since the county has approved it, it's mostly done - we just need the formal sign-offs.

We've had our humidifier (aka boat motor), suction machine (aka lawnmower) and box after box of medical supply dropped at our front door and setup. We've got the apnea/bradycardia monitor sitting cribside so we can practice with it in the hospital. We've had to have a med training to dispense his medicine, infant CPR, monitor training, 2 trach changes each, been certified by the nurses as completely competent to care for Mikey, and on Monday we're doing our first G-tube change (something you do every three months). Also on Monday morning we're having his manhood trimmed, so to speak. Shell's OB that saved her life is coming over special to do the procedure.

Hopefully by his third month birthday, we'll be bringing him home and ending this first phase of his infancy. We can all agree it's not ideal, but the second phase is going to be more loving, caring, supporting and nurturing than he could ever imagine. And with the progress he's been making at the hospital, I expect to see leaps and bounds here at home. I'm not rushing to say how far we'll get, but improvements will keep happening.

The other day, our Neurologist did his biweekly exam and found that Mikey indeed is showing a gag reflex - about a 3-4 out of 10 - but previously it had been a 0-1. While he didn't respond to light flashes in a couple previous tests, he did this time! And everyone of us that knows him and spends time with him knows he hears us. Last night when I went into see him, I walked silently over towards his crib and went to the side where he wasn't currently looking and started talking to him. His eyes opened wide, and he got all his limbs moving and rolled his head right over to the sound of my voice. He knows when I'm with him, and as his Daddy there's nothing more special than having this little boy acknowledge you're there by relaxing right in front of you.

Wednesday, May 2, 2007

From my front porch looking in...

This is our first visit together as a family - as the hospital finally allowed siblings to visit their loved ones. Our loved one was snuggled in the warmth of the three most beautiful girls I've ever seen. If you could have just seen how he relaxed and enjoyed being held by his sisters. The way Michailey calmed him was pure magic. It was as though she'd calmed a hundred other babies and this was just one more - she knew exactly how to love her brother.

After a couple of renditions of "Twinkle, Twinkle, Little Star", I realized that as out of tune as it was, it was sort of completely right for the moment. We're just a family of five that's sort of out of sync. We're missing a soldier. Nothing's going to feel right till we're sleeping under the same roof, with all three little ones tucked in a sleeping tight. Even when our girls stay the night at someone else's house, I, to this day, each and every time, sort of forget when I reach the top of the stairs and I still turn the corner into Michailey's room and see if she's OK. I still get down real close and listen to them breathe. Now our littlest one is pushing on on his own, each day, making progress inside himself. Well, his reinforcements are on the way. If he's anything like me, hugs from those two little girls (and the big one, too) are all I need to feel much, much better.

Some of you non country music fans are going to have to bear with me here. In fact, I've got a few friends reading this that are going to mark it down in their books that I indeed own some music like this - but the pictures should make up for the music if it doesn't work for you.

The story behind this song is self-evident when you hear the words. The problem is that we have to get Lonestar to add another line or two in to make it current. We're missing our little boy in this song. The thing about this song is that it always plays on my ipod as I land back home again after a trip away.