Mikey's Love

Happy Holidays from all of us...

2008-12-17T10:21:00.002-05:00

Mikey told me that he wanted his adoring fans to have an update. And you just can't ignore Mikey telling you what to do.

I'm going to get a nice photo spread together when I get on vacation next week and publish a holiday update to everyone. We've had a mostly triumphant year and we've managed to keep our family moving in the right directions across the board, and the update will give you guys all of that.

So this is a quick update to let all of you readers know that we're going to start using our blog again and share Mikey's story. In light of the 2 years of experience we have in living with a very special child, we've decided to do a couple of things, but we need your help to make them come to a reality.

* We are going to write a memoir of the first two years of Mikey's life. We're going to try and take our story and put it to use for families that go through things similar to us, and hopefully give them some hope for the future and courage to face it head on.

* We want to start an advocacy group to help families find, secure and manage in-home nursing, medical supply deliveries and manage the massive paper nightmare that floods your kitchen table with decisions to make, decisions made for you - mostly not to your liking, and how to manage the people in your home.

Here's what we need from you:

1.) We need pictures, stories, emails you have related to our story. I know I sent lots of emails to folks that I haven't kept as good track of as I'd like - but it's not like I was busy or anything.

2.) The concept for the book needs to have more than just our perspectives and all of you folks reading this probably have lots of little details that we didn't see because we were so busy just getting through our days. So I'm looking for your stories of watching our family go through these past two years. I'm sure we've done things we wish we could change, would do again without question and things we did that we don't even know we did - whatever you have, send it over!

Until the update, Merry Christmas from Mikey and his family.

What a Year!

2008-02-18T00:45:00.010-05:00

Mikey turns one today.

Our little boy turns one.

The little boy that had to fight so hard to take his first breath has been with us for one year.

It's sort of unreal that this day is here - the pain, drama, sleepless nights that started a year ago are so vivid and real that it seems impossible to have made it through 365 days. Then you look back and it feels like the blink of an eye. All the cliche statements are true and I don't need to write them all here - you all know.

Shell wanted very much to put up a bunch of pictures (big surprise there, eh?) and post a blog entry. For me, it's been hard to know what to say these past few months. Life is so busy and we get so little sleep that it all just runs together into kind of a blurry mess. When I used to sit down and write these blog entries, I'd usually have a point to make - something that had to be said. But the real story is one of struggle and pain and living on so little sleep that you can't think straight. Truth be told, yes, there are genuinely amazing moments that happen all the time - but they're so mixed into the sleepless blur it's hard to remember them clearly.

I think people want to see our family grow up together, see how the spirited fight that our youngest boy has in him and see where his life goes. And there's no shortage of fight in this little boy, let me tell you. That being said, this blog has been a very, very personal airing of feelings and it's hard to find the courage to keep that going all the time. Sometimes to say exactly how we feel about something, it means sharing stories and details that are too personal for the web to see. Afterall, we have real people - ones who may be reading this blog right now - that come into our home in a professional capacity everyday of the week. We have public agencies that have the right to pry into our lives at any time - and they can read this blog. So it's very hard to share our day to day story in the tone I've always written in, because, well, I usually don't like pulling punches, softening the blows, etc. Rough stuff happens all the time and the smallest things can send our day into a tailspin - but as much as you want to shout those things out, we need all these people that aren't just family or friends. So the blog is going to evolve into Shell's daily control - something she can post the pictures of our days on, tell her side of the story and keep everyone in the know about how things are going here on the homefront, where we fight the fight that legends are made of on a daily basis.

What I can say about this past year is this:

I've never been prouder to be a father than the past year. My three children have made me the proudest man in the world. Michailey and Emme have proved themselves to be amazing little girls that get amazing grades in school, love their special brother without thinking about it, and love each other and their parents more than anything in the world.

Mikey has opened my eyes (and continues to do so) to just how normal he really is. He needs love. Check. He likes to be tickled. Check. He knows my voice and it makes him happy to hear me and see me. Check. Check. Check.

I can admit that it's hard to accept that I'm not raising the boy I thought I would have. I fall prey to wondering why it happened to him. What really happens is that I selfishly don't put him first and I put my own desires first. I can't say I won't do it, but with Shell's help, I'm realizing just how normal Mikey really is.

One year ago today, my wife and son's lives were in the balance. It wasn't hypothetical - it was real. It wasn't a tv show. Today, they've both had their passports stamped in St. Maarten and spent a week in New Orleans at a 5 star hotel. They're here, full of life and love - no matter what your sense of a higher power is, you can't tell me it isn't amazing.

Check out our slide show! I'm working on getting them into the blog, but for now, click here!

www.flickr.com

kasprzyk's Mikey Blog Photos photoset

So, it's been a while, eh?

2007-10-29T00:33:00.000-04:00

Back in March, when things looked so grim, so dark, so utterly menacing, this blog had a purpose. Admittedly it had two purposes. One was to stop my phone from ringing - selfish, but practical. The other was a weak, poor attempt to replace something I was missing. Something that was so vital to my being, yet impossible to recognize in the state of mind I was in - I needed a friend.

Many people were genuinely surprised when I started a blog because they know me to be intensely private about many things, and exposing my family's life to the world seemed so counter-intuitive. Maybe it was my way of crying out for help.

And help came.

It came in the form of family and friends that overwhelmed my world with love. Without so many of the people that have helped us, it would have been impossible to sit in my room overlooking the ocean, working for a dream client, earning good money for my family, and feeling any sort of peace in my soul.

So many things that are amazing to me have happened. I'm grateful to Vic (Dad) for standing by my side and helping me bring his daughter home. I'm grateful to my sisters (Jenna, too) for the wonderful friendship and love they've given me. Dawn, Audie and Jenna are not only classy, wonderful sisters, I count them as my friends for life. While I've been away, I've truly missed them all.

I'm grateful to my Mom for all the nights she spent making sure I could at least pretend to sleep in the hospital while my loved ones slept in their hospital beds with blinking lights, beeping machines and cords, wires and tubes connected to them. There's nothing like your Mom to help make things a little easier. I've learned that being a parent doesn't mean you can take the pain away, but you CAN make it easier and she did.

I'm grateful to Doug and Erik have truly shown what brothers are all about. I respect you both enormously.

I'm grateful to Father Croglio, the man that has married and remarried me to my loving bride. The man that came to my side within hours of hearing that I needed him.

I'm grateful to my father for an email he wrote me where he took hundreds if not thousands of pounds off my shoulders when he told me that I wasn't going crazy and that my burden wasn't that of one man. I can't tell you what two lines in an email can do for your spirits.

With all this gratitude going on, it's hard to remember what the fuss is all about, isn't it? Shouldn't I have been grateful for all these people before they spent hundreds of hours consoling, helping, putting my girls to bed, propping me up, helping me get my work done? I should have and I probably wasn't. I may not have been awake enough to realize that I'm part of a family - a large one at that - of people who would give you the shirt off their back if it helped you. I'm ashamed that it took almost losing the love of my life and my only son to help me see.

What I've learned to be most grateful for is the peace in my heart when I think of my wife. Most of you know us to be the ones that won't think twice of telling each other what we think, whenever we feel like it. Sometimes it's downright uncool. Some of you have seen us struggle with our lives in ways that have brought tears to your eyes. There's no rule book for this. There's no guide posts along the trail. When you're cutting a trail with a machete, you're going to nick yourself and others along the way.

But what many of you have never seen, heard or witnessed, is the quiet love that my wife and I share. No matter the surroundings, the problems, it's there like a warm summer breeze.

So, in front of an amazing sunset, with my son as my best man, my girls sprinkling rose petals down the walk, and Dawn and Erik at our sides, Shell and I renewed our vows of love once again. She is my everything, she is my one true love. The one you get, hold on to, treasure your moments with, and never forget the heart racing fear that you may one day not be together on this earth. My advise to all of you is to make damn sure you're with the person you'd go to the end of the earth for and then never, ever let them go.

I share these pictures with you as proof that love endures all things if you only hold on. I share these pictures so the world has proof that love is all you need.

THANK YOU!

2007-08-30T23:42:00.000-04:00

Dear Friends, Family and all the people who have
prayed, thought about or supported us in anyway…This
is for you.

We don’t know how to begin to thank all of you who
helped out at the benefit. We know there were many
people behind the scenes who cooked, cleaned, made
food and donated baskets, money or their time. It was
AMAZING!

We felt so honored and loved by the amount of people
who showed up and blessed our family with their
smiles, their hugs and well wishes. We are truly
lucky to have you all in our lives and our family in
your hearts.

We’d like to continue to write, upload pictures and
give you information about Mikey and our family as
often as we can. I can’t believe how the summer flew
by and I barely saw the sun with all the appts. and
therapies Mikey has had. My girls barely got a chance
to ride their bikes or swim in the pool. But don’t
feel too bad for us. In a few weeks we will get a
chance to earn some of that time back and make up for
the time Mikey and I spent in the hospital.

We have an opportunity to vacation this fall. We will
upload the pictures from where we are at when we get
there. You can start guessing if you want. It’s a
beautiful place that I have never been and Mike, my
husband, can’t wait to whisk our family away to this
place. No nurses, No therapies, No doctor appts.!!
Mikey’s first airplane!!

We have a lot on our plate right now but we had to
make the time to do this video for you and let you
know how much we have needed your prayers and kind
words. The cards that are coming in are so touching
and warm. You have no idea how loved that makes us
feel. I only hope one day I will be able to give back
all the love you’ve shown us.

Thank you, we love you, this is more than words can
express.

Love,
Mike, Michelle, Michailey, Emme & Mikey

Meet Mikey!!!

2007-08-15T15:25:00.000-04:00

Okay...so our family and friends decided to have a benefit for our family this Sunday, 1:00pm at St. Christophers Church, 2660 Niagara Falls Blvd., Tonawanda, NY.

Mike, is working on another movie and I have pictures of the first few days when Mikey and I were in the hospital.

We are very excited to hopefully meet a lot of people who have shown us so much support during these past 6 months. Many of my doctors and Mikey's doctors will be there.

There is going to be a huge basket auction, raffles, a bounce house, 50/50 split, food, music and so much more!

If you are not able to make it out that day...please know that we understand. We are grateful for your thoughts and prayers. They help more than you know.

~Michelle & Mike

Until then...here are a few of my favorites of Mikey and our family! (I will update when the blogger photos finish uploading)

Mikey's Big News!

2007-07-31T23:34:00.001-04:00

One week ago today Mikey went to the ENT and got a speaking valve! We have been working with a wonderful speech therapist, Liz, who agreed with us that Mikey needs to hear himself when he wants to communicate. So the whistling sound I used to hear when he cries, is now just that, HIS cry. It's the most wonderful thing I have ever heard!

I now feel like a true Mom. I can tell when my little boy is sad, hurt, hungry or just plain wants his Mommy. It's the best feeling in the world to be able to comfort him like that.

Mikey has been doing really well with therapies and at the doctor appts. He has a super PT that is working with his arching and muscles to be able to sit up. Mikey just loves it when Maria comes to work him out. She is the only one who can get him to relax in a good midline position.

Dr. Montgomery is an awsome pediatrician who follows him every month with his G-tube feedings, trach care and all the other typical baby stuff.

Mikey has 7 other doctor appts. this month so I hope you can understand if we don't always update the blog as much as we want to. We are sorry for that.

We will continue to update everyone with HIS progress, us and the girls.

Thanks for continuing to read and send comments. We really love to hear from you.

New video and pics, coming soon!!

Love,
~Mommy

A Day in the Life of Mikey's Mom & Dad

2007-07-06T01:05:00.000-04:00

For All of you who might not understand why we can't
return emails fast enough, phone calls or respond with
the proper thank you that we'd like to...here is what
a typical day can be like with a special needs baby.

The day begins at 12:00am where both of us will be
doing an overnight shift because we do not have the
full week covered with night nurses. Mike sleeps from
8:00pm to 2:00am while I stay awake with Mikey.
Then I get to go to bed at 2:00am and sleep until 7:30am.
I awake, usually to the beautiful face of Emmepaige
greeting me with a snuggle and wild bed head!

We cuddle for a little bit...then I usually pop out of bed
because I hear the sound of my baby crying
(sounds like heavy wind screeching through the trach)
because it's bathtime and he doesn't always like his bath.
(it prevents him from arching, a typical response of what
we think is cerebral palsy, although the Drs. won't say it)

I try and calm him down while the nurse, who comes
around 8:00am some days, can finish his morning routine.
He then falls asleep in my arms and I am happy to spend
some cuddle time with him. In the meantime, while Mike
trys to start his day, footsteps come down the stairs
and it's my other princess, Michailey, looking with a
smile to say good morning to her brother, after she
purell's her hands. She always remembers to do that.

I then tell the girls to help themselves to breakfast
until I soak up the rest of my boy's sweet love as he
cuddles into me.

In the meantime, the girls have finished their
breakfast, turned on the TV and I don't see them for
awhile. So I begin to try and catch up on
Mikey's to-do-list that looks something like this.

1-call various Drs. and set up appts.
2-call the supply place and order more of the
equipment that I didn't receive or need more of.
4-call the agency and beg for more nurses but pled for
them to be competent to care for my infant son!
5-call the G-tube supply place for supplies because
the trach stuff and g-tube equipment come from 2
different offices.
6-organize paperwork which consist of bills, therapy
info, business cards, notes, dr. appts, etc.
7-cordinate the therapists for this month and ask for
a schedule for next.
8-call SKIP of NY (who is wonderful by the way) and
talk with Mikey's case worker to keep the comunication
going about his care and what needs to be done next in
order to get some of the things that Mikey needs like
a generator, a/c, bendy bumper, wedge, etc.
9-continue to think of ways to organize his care, new
updates, procedures, with the nurses, therapists and
family.

Then I might take a break and call a good friend or
family member to update them, just to talk or vent
about any problem that happened that day or night
before. (Thanks for listening!)

Check on the girls who by now have the back room filled
with toys, books, cereal boxs and snacks all over.
Now I have to ask them to clean it up and then of
course it's whining and arguing about who messed up
what. Let them work it out because the phone just
rang again.

By this time a therapist has come for his appt. and
now I try to get a quick shower in so I can be there
watching and learning what new things they are doing
with him, so I can continue to do them with him later
that day and week.

The girls want attention and lunch at some point and
then I call for Mike, who is always way behind on his
work but always makes the time to come in and help.
He feeds the girls a late lunch and by this time I
break too for a quick bite, only to realize that the
nurse will be going home soon and I have housework to
do. (ok so the housework never really gets done)
Hence the messy upstairs I never let anyone see!

Now it's dinner time and we are all on Mikey duty.
(all meaning-the girls too) Michailey helps suction,
while Emme sings, kisses or just cuddles him. I clear
off the paperwork and junk off the table to set it,
while Mike cooks. (shortened work day again, but
knowing he can make some of it up on the weekend or on
the night shift)

We take shifts in eating our dinner due to Mikey's
suctioning needs. Then it's time to clean up and sit
for 30 minutes. Oh but wait, it's bath night for the
girls and then get them ready for bed. Mommy reads them a
book, while Daddy sits with Mikey annnnnnd...switch!
Daddy then usually falls asleep after tucking them in
and I wait for a nurse who helps out with some of
the night shifts, give her the update and then join my
snoring husband in bed.

And the next morning...it starts all over again.

So for those of you who DO understand when we don't
always call back right away and changing the time we
were going to meet or plans that day...THANK YOU! You
have no idea how nice it is to have that support and
understanding even though you don't know how it has
been for us that day.

Thanks for continuing to read the blog, pray for us
and listen. It's nice to know that people still care,
look and read about our life.

I am starting to know what it's like to live the "new
normal", and it's ok.

God Bless.
~Michelle

Our little fighter in training

2007-06-13T05:26:00.000-04:00

Ok, ok, ok. You want an update. I know. My apologies. I have to admit my sleep altered state has somewhat affected my writing desires the past couple of weeks. We've had lots of uncovered nursing shifts and we're still trying to sift through people that are interested in helping, but don't meet the medicaid requirements or those that do, but have a pile of paperwork to get through, just to get going.

Shell's been doing everything she can to keep our lives as normal as possible - but that's almost a herculean feat at this point. Just taking the family to DQ the other night proved to be nightmarish - let alone thinking about how we can do all of this without nursing covering all the hours we've been told to have (and really need) and still keep our sanity.

I think the hardest part is that the nights I stay up, I sleep in the evening for a couple hours before the shift. So we don't really get the time together that we both need. Then the next night when we do have a nurse, I stay up waiting for her to come and Shell gets some rest early since the next night I have an overnight again and she's got a lot to get through. Ships passing in the night pretty much sucks. Add in trying to run the business and her keeping up with the nurses, scheduling of therapies, doctor appointments, you name it.

So, coming apart at it seams has it's rewards, however. Take a look at this video. While most of you that have babies that just did everything they were expected to, just imagine that it happened in sloooooooooow motion, ok? Just figure tiny steps, not running strides.

We're so proud of this boy.

This video is dedicated to all of you that have helped us in any small or large way. We're still trying to figure out how to thank everyone properly, but hopefully you all realize when you watch these videos that you made it possible for Mikey to get moving in the right direction. You made it happen with your smiles, encouragement, babysitting, extra money to get what we needed, shopping, laundry, errands, friendship, love, many prayers and hope - for all that's better than what Mikey had to start with. He's on his way because you helped his Mommy and Daddy be what he needed, even if we were completely neglecting all our other duties. Thank-you.

Mikey has really landed well.

2007-05-29T09:06:00.000-04:00

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....

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

2007-05-19T10:22:00.000-04:00

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.

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

2007-05-11T22:43:00.000-04:00

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.

From my front porch looking in...

2007-05-02T01:11:00.000-04:00

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.

"Medically Ready to Go Home"

2007-04-22T22:28:00.000-04:00

OK. We've officially heard the news. Mikey is medically able to come home, IF and ONLY IF we have nurses ready to go.

We don't.

After two rounds of solicitations by our service coordinator, SKIP of NY, to all the nursing agencies in Erie county, they've heard nothing in response. Not even a "Can you tell us more about this little boy and his family?" Nothing.

Medicaid has been applied for and we're waiting for decisions on the Care at Home Waiver being approved. This is the special clause in Medicaid (In NYS, anyway) that allows those who don't qualify for Medicaid outright to be able to get assistance paying In-home nursing. (I think if you make more than $100/week you don't qualify for this, either)

So, while we wait for nursing, Mikey lays in a blue metal crib in a room with 5 other babies of varying illness, germs, and the like. He lays there with his mist collar on, looking at his mobile waiting for someone to take him home.

We had hoped for Mother's day. Neither one of us think that's possible. We're trying to be hopeful for Father's day. And he'd better be home before my birthday in late July.

What hurts me the most is the pain I see hidden behind my wife's eyes. What hurts is that when she was laying on that bed dying in front of me and I told her she had to fight and fight hard, I told her I would bring her home to her baby. I told her if she could fight, I'd never leave her side and I would be there to bring her back to her family. She did everything I could have ever asked for, and I have let her down by not being able to bring her son home to her.

I know many of you reading this are going to post comments or call me within minutes of reading this and tell me I didn't fail. I know that I've done what I could have done - but it won't make the hurt go away that I can't bring him home and put him in his Mommy's arms.

We need nurses. If you know a nurse, call them. Tell them. Give them the link to this blog. Ask if they know anyone. Please.

Mikey needs to feel the sunshine on his face for the first time.

He needs to feel the wind blow warmly over him, while he listens to his sisters play in the yard.

He needs the dogs to kiss him.

Mikey needs to feel his sisters' embraces.

He needs to take naps laying on my chest with the Yankees playing on the tv on a Saturday afternoon.

Mikeys journey so far....

2007-04-20T01:55:00.000-04:00

I made this tonight, after an especially long day. For all of you wondering, this week has been kind of crazy and things really came to a head with the folks at the hospital. I, unfortunately, didn't maintain my composure on Monday when I found Mikey on the floor sitting in a bouncy seat...and it didn't go much better from there. I was in the wrong for not addressing my upset more professionally - but it made for a long week. I haven't gotten to a place where I can write all the events down, but I will.

In the meantime, I put my midnight oil to work on a little movie about Mikey's Early Days. Hope you enjoy it.

A voice for my heart.

2007-04-18T00:30:00.000-04:00

"Remember When It Rained"

Wash away the thoughts inside
That keep my mind away from you.
No more love and no more pride
And thoughts are all I have to do.

Ohhhhhh Remember when it rained.
Felt the ground and looked up high
And called your name.
Ohhhhhh Remember when it rained.
In the darkness I remain.

Tears of hope run down my skin.
Tears for you that will not dry.
They magnify the one within
And let the outside slowly die.

Ohhhhhh Remember when it rained.
I felt the ground and looked up high
And called your name.
Ohhhhhh Remember when it rained.
In the water I remain
Running down
Running down
Running down
Running down
Running down
Running down
Running down

-Josh Groban

I feel when I'm away from him that I'm wrong for not being at his side -even though the rational part of me knows that I have to be away and doing the rest of life, taking the girls places and making school lunches and all the rest. The lyrics are a bit 'open' to interpretation, but the vocal gives my heart a voice and that's what's important.

Here's a video and explanation from him on the song:

This one is a great recording of him doing the song live in Houston, TX.

A note from Mommy

2007-04-17T08:03:00.000-04:00

As I sit here tonight trying to write my first blog
entry to all of you who are so caring and interested
in how our family is doing after the tragedy that has
flipped our future.

First off, I would like everyone to know how wonderful
my recovery is going and I thank you from the bottom
of my healing heart to the numbness in my feet for
your prayers, thoughts and outpouring generosity you
bring. Coming up on Wednesday will be two months from
the day I went into the hospital to have my beautiful
baby boy, Michael and the day that would be a turning
point in my life.

If you would have told me that I would at 35 yrs old, be
stripped of the many joys that pregnancy and delivery
can bring and almost all of my organs failing and
having a 4% chance to live as a result of a most often
fatal complication called AFE, I would have freaked
out at first but then said, "bring it on."

What I've realized is that I love being a MOM. I will
always attribute my strengths and my drive, my purpose
for being on this earth is to raise my 3 beautiful
children to carry on my love of life. What I didn't
realize is how important a role my husband, my best
friend would play in this. He is the like the cane I
use to balance me. He's like the blanket I use to
warm me. He is the "rock" I use to lean on when
everything I know seems too much. His support, care
and unconditional, unexpected, unbelievable, love has
made me the happiest and luckiest girl alive.

What happened today at the hospital was so
unprofessional, so hurtful, that I want to wait for a
day to sleep on it and write with a fresh mindset.
After I wake and thank God for another day of life.
How precious each day is to me now. I really wouldn't
change anything. I have everything I've ever wanted
in my life...wonderful family, great friends and
people who love me.

Good night and in the morning take a minute, look out
your window and whether it's raining, snowing or
sunny...just thank God he gave it to you.

Love,
~Mommy (Shell)

"Miracles happen out of love."

Information can be misleading

2007-04-15T00:17:00.000-04:00

This hospital stuff is all new to most of us reading (and writing) this blog. Most of us don't frequent the hospital world and most of us don't know the difference between an 8 French Catheter and a foley. Unfortunately I know what both are and they both suck. ;)

One of the things I realized very quickly after all this mess happened to us was that the Internet was not going to be a good source for me to learn anything. Assorted versions of information available about what happened to Shell and Mikey were not organized, filtered, unbiased and sometimes just plain old inaccurate. So I stopped reading after the first night because for my own sanity's sake I had to put some trust in the docs and just ask all my questions of them.

I also know that isn't a perfect strategy either - being armed with good information so that the docs talking to you get a quick sense that you're 'with it' and they're able to give you the straight poop (and nothing but the poop, Ma'am) is important. It's also important to know what meds your sick family member is on and how they work and why, etc. Since Shell's been home I've read ALL of it and drawn my own conclusions - most of which is the same as what I learned by just being with Shell and the doctors.

What isn't good is reading reviews of obscure medical studies that conclude this or that about what happened to us, what will happen in the future or who's fault anything is. You never know what kind of drugs the author may have been indulging in at the time of publication, either.

We know that the AFE/DIC could have happened to any pregnant woman at any time. I've seen somewhat unreliable sites and folks say that maternal age, inducement, sex of the baby (it happens statistically more to baby boys than girls) all can play a factor. What I've also learned is that this condition can only be a confirmed diagnosis by performing an autopsy on a woman - something we're plenty fine with not knowing. ;) When some site says the 'risk is elevated' under certain conditions, the ultimate interpretation is they have no idea what caused it, but of the women that had it, so many were taking this drug, doing this thing with their left foot, a small percentage were scratching their noses, rubbing their eyes, thinking about their normal lives and the list goes on.

I also know that ultimately it was our OB being prepared for an event like this and having read an article on it a week prior to February 18th, when our life got dumped out like kids toys on our playroom floor. He called this within a few minutes of her presenting symptoms and did the C-section KNOWING that she would go into DIC and as such had to stitch her up tighter than Fort Knox. Plain and simple, he kicked ass and saved Shell's life. Even when she went back in for a 'clean-out' to remove the infected fluid in her belly, the uterus was perfectly intact and looked good. Incisions and stitches were perfect. For that we're eternally thankful.

That's about all we need to know about AFE.

Lucky little boy

2007-04-14T10:30:00.000-04:00

He's going to wish he could find three pretty sisters to kiss him when he's a teenager. :)

Mikey's had some good nursing, and good loving from his family. Thanks to everyone helping him get out of that depressing hospital.

We're starting to try to spread the word faster about needing nursing for Mikey - LPN's are what we're really looking for. Please spread the word to your church, schools, doctors offices, whoever you know. I think all they need to do is meet the little man and they'll fall in love! We just have to find them and make introductions.

Moving better and better

2007-04-12T19:12:00.000-04:00

Today was pretty neat. Mikey was moving so nicely. It just seems like you're looking at a different kid sometimes. I'm learning when he's not being stimulated, he's much much looser and calmer. I think that's going to be important when he gets home, not providing too much sensory stuff he can't yet handle. All in good time.

Some cool video from today...

Quick update - update to the update.

2007-04-11T23:42:00.000-04:00

Shell and I went to the hospital today for Mikey's 2nd MRI. The Doc was hoping to discover something that might explain some of his muscle spasticity - but likely nothing is going to show, as was the case at the last MRI.

So we were told to be there at 6am for the test and we could be in the room with Mikey for the test and it would take 3-4 minutes.

We show up and aren't allowed in the room ("Sorry charlie, you got the wrong info from someone") and it took 30 minutes.

At least he had earplugs and was pretty well sedated. They seem to love the sedatives over there. Ah, he's just a baby - let's dope him up! That'll make it easier for us to do our jobs! Whatever.

Shell and I put up a few requests today that I think have everyone scratching their heads. We asked for the head of the hospital to sit down with us and go through the (tragic) comedy of errors these folks continually put us through as well as a full care plan from all the docs involved in Mikey's care. It's kind of funny how everyone said how hard that would be! Can you imagine! Yes, your son doesn't have a plan, we won't make one and getting us all in the same room at the same time to discuss you? Come on now.

Apparently Doc 1 is only free on Tuesdays. Doc 2 is only free on Thursdays. Doc 3 and 4 are on vacation for a week and Doc 5 is switching services so another replacement Doc (5a?) that doesn't know Mikey at all will be coming in next week, so we can't schedule it until he shows up on Monday.

We came in specifically for rounds today and guess what? Our attending doc didn't show up, even though we specifically asked for him. We were told he'd be in during rounds and then didn't come.

So we're hoping for NEXT thursday to sit down and discuss what has to happen to get Mikey out of the joint. At least in prison you know when your parole hearing will be.

On some good notes, Shell and I are getting much more comfortable with suctioning the trach, feeding him on the g-tube and basically caring for him. And for all of you looking for nurses for us, we only need an LPN for trach work. No RN required. That /should/ make it easier to find an agency. I hope. For any of you with any leads on nurses PLEASE send them over to me at mikek at thinwires dot com. (That's anti-spammer lingo, of course - you put the symbols and dots where they belong;)

Speaking of nurses - we've experienced quite an upturn in the quality of nursing we've gotten. It seems that we've found a cadre of nurses now that are regularly attending to Mikey when they work and it seems as though they've all learned his signs pretty well. Thank goodness - I was starting to think I'd have pot luck forever. Joyce in particular has been awesome at training us at every little bell and whistle on the boy. I am really comfortable now with caring for him - at least how to, maybe not the intensity - on my own now. I could clean his trach, change the collar, suction him, even help him come back from an episode where he desaturates a little bit.

Sometimes you don't see it coming.

2007-04-08T21:44:00.000-04:00

There's things you do with all babies. Their first Easter, 4th of July, Christmas, New Years, Birthdays. Although today turned into a day I ended up happy with, it certainly had it's bumps and bruises.

After getting to mass late today (some things even a near death experience won't change, ahem, ahem, Shell!) we sat in the church gymnasium for the 'overflow' mass. So, ok, the chairs were actually more comfortable and there was plenty of room. I'm thinking, just get through mass, don't cuss in your prayers and make sure the girls behave themselves.

Then we stand up for the introductory hymn and there he is. A little boy in his father's arms wearing a corduroy blazer, just like ones Mommy bought for Daddy and Mikey at Christmas time. His remains hanging in my closet, waiting for the little man to fill it out properly. This boy looked so perfect, so healthy, so cute, I actually started to lose it in church. Tears coming down my face, I point him out to Shell and she realizes in a second what I was upset about. As I thought, "I can't do this right now. I have to get out of here or I'm going to pass out," I looked at the girls and realized I'd confuse them and make them worry for no reason. So I sniffed it all away and started trying to distract myself.

Then the boy caught hold of my red teary eyed face and would not stop looking me right in the eyes. Oh man - he was just so perfect in his Daddy's arms. I wasn't mad, wasn't wishing for anything else other than to have Mikey in a car seat next to me, crying because the suit blazer we put him in was making him sweat. Honestly, mostly what I was thinking about what that at least that boy was OK and here in his Daddy's arms. I thought I might get jealous or mad, but that didn't really happen. I just kept thinking my boy is strong enough to handle anything, but we all wish he didn't have to prove it.

The little boy in the blue blazer and I got along fine though. I started making funny faces at him and made him laugh. Then he started frowning back at me (which I of course copied back to him) and he laughed again.

After the homily, Shell hands me this index card, where she has written me a note:

"Miracles happen because of love, and I am here because of you."

I feel the tears coming, but I look at her thinking I'm just going to smile and tell her I'm happy she's with me when she says, "Flip over the card."

And there's Mikey's footprint and birthdate staring back up at me and I lost it again.

It's so hard to try and remember how and why I could keep on going and going when Mikey and Shell were both in the ICU's, and we didn't know if either would live. I remember thinking that it was an impossible situation - kind of my Kobiyashi Maru - I've linked it here for any of you non star trek folks reading this. Most of the time the only way someone can get out of a no-win situation is to cheat. There is no cheating at this game, though - you get trampled sometimes no matter what.

Then we went to Shell's Mom's house for Easter. The whole way I was hoping I could make up some reason why I could go see Mikey or better yet go home and pretend the whole day wasn't happening. Alas, we get there and I see everyone and it's ok. Shell's sisters and Erik and Doug have been really great to me, especially in the hospital - I can feel the comfort they wish they could give us. It's so obvious we're loved and cared for. I have yet to think of anything in the world I could say or do that would let them know how much I appreciate them all. Words really suck sometimes. They just don't seem like enough. For all the folks that have helped us, I've been realizing we have no way to repay the debt - I think it's more our job to 'pay it forward' when the times arise in our lives. You can all count on us for that. I only hope what we can give, when we can give it will be enough.

Mom made a great dinner (no quiche rules!) and things were really kind of nice. Pretty laid back, and as I recall there weren't any tears from any of the kids, which was like an extra cherry on a sundae.

Dawn, Erik, Shell and I went up to see Mikey afterwards - what a really nice visit. It was pretty tough at times suctioning him and trying to read what he was telling us - pain, diaper, etc. What was really cool was stepping back and watching Dawn and Erik hold his fingers for a while towards the end of the visit. They both just kept soothing him and keeping him resting nice - I can't tell you how that melted my heart. When I think about all the weird looks we'll get when we finally do go out in public with him, it's so so so nice to know all of his family loves him and accepts him with all his tubes and wires. The thing is our "normal" isn't going to be other people's "normal" anymore. It's not going to be about seeing if our two year old does the same things as another two year old. It's going to be about Mikey doing things that make the rollercoaster ride were on a little more enjoyable.

Happy Easter to all of you reading this. I think you can see from the Sitemeter near the top of the page, there's quite a few of you reading this everyday. I'm shocked and amazed, but mostly happy to know that this way of communicating is helping so many other people besides us. I've been told it's helping others that have been hospitalized, made husbands and wives look at each other differently, hug their kids a little tighter, and maybe see the good there is in this world. For all the anger I know is buried in my heart about all of this, I really do see good through the dark clouds here. Thanks for helping me with that.

Anybody need a weight lifting partner in Amherst? This anger has to come out somehow. ;)

A little treat

2007-04-05T03:30:00.000-04:00

Since we had such a nice visit tonight with Mikey, I was inspired to share a very special little video clip I took of Mikey last Thursday.

This is an example of a small thing turned into a huge thing.

Take a look:

A chance to feel like Mommy and Daddy...

2007-04-05T01:48:00.000-04:00

Tonight was a real treat - again, like my small things post, you need perspective to appreciate this.

We had an amazing nurse tonight - she let us bathe Mikey, help change his dressings, help weigh him, make his bed, and Shell got to hold him for 5 minutes. I will post a couple of pictures later - I didn't take the camera tonight, so I'm emailing them off of my phone. Could be weeks before they get here. ;)

The look in Shell's eyes taking care of her boy was awesome to see. She and I have been leaning on each other in the dark moments and it was nice to finally feel a calm, almost normal moment. I was sort of picturing our first baby bath - with Michailey. I remember the feeling of thinking she was so fragile that I couldn't possibly rub her skin that hard or worrying about the shampoo near her eyes, or that she would be cold because I moved so darn slow and clumsy all the time. Tonight I got a chance to see how I got through those times. Shell showed me. That was nice to see again.

Rita told us today that we'll eventually feel normal again - except normal won't be what it used to be. There doesn't seem to be any choice in the matter either, eh? I suppose each time things change it's an opportunity to see things in a new light and make new choices.

Sometimes when things are at their worst for me, I've realized that many of those times are when people say or do things to make me feel backed in a corner. When some nurse says "Well, you have no choice but to keep your son here" I could really lose it. Brings me back to Mrs. Tancrede's math class in 9th grade when she told the class publicly I couldn't pass the regents because I didn't do all of her homework (again). I just told her I'd be at the pizza party for the nerds that got 95 and above. She had to call my parents and apologize when she graded and regraded my exam and had to score it 100%. Pizza never tasted so good.

There's always a choice, and I refuse to be told "You have no choice." Every single person I've talked to with a child with a disability or a loved one that faced serious hospital time has said you have to be a strong advocate for them when they can't be. Trust my gut instinct, ask for second and tenth opinions, etc. I'm frankly pretty sure that any nurse or doctor faced with the same situation as us would be doing exactly that, too. Why is it that they are all so shocked when I question the medicines, or ask about when my son might not be sedated anymore?

Cheers to every Mom and Dad that's gone over someone's head to get more information, ask more questions, stop incompetence from hurting their baby, and any other incredible situation that parenting proved to be the answer for. When I used to work with special kids I had absolutely NO IDEA what their parents had to deal with. My hat goes off to everyone of those kids' Moms and Dads and families that took care of them.

Small progress...

2007-04-03T01:17:00.000-04:00

Small progress. It's funny how you can warp your mind into thinking that things that used to be big are small and small things grow big.

It seems that Mikey's wounds are small things to the folks at Children's, but geez - a liver hanging out and a wide open wound seem pretty big to us.
Seeing Mikey's still swollen face and thinking "Man he looks really good to me" seems crazy in any other situation.
Asking the Physical Therapist and Occupational Therapist for a "Care Plan" that they simply must have been working from when they come to do therapy seemed to not only ask them to move a mountain, but more, to build the mountain, then move it six inches to the left.
Making sure the nurses don't call Mikey "My baby" in front of my wife seems pretty small to me. Judging by the looks on their faces, it could've been like telling them their own Mothers gave birth to trolls.
Asking for a Doctor to apologize to my wife for her having to find her son needing emergency surgery instead of responding to his pages 4 hours earlier is a small thing. Getting him to "man up" and do it - a big thing.

The list could go on, but I'll stop for now before that last one gets me going again. All in all, Mikey did look better to me than the past several days, and his color was much nicer, too. When I stood between his face and the sunlight today, he opened his eyes for a brief moment and caught my eyes, before fading back into his sedatives. That was worth the price of admission all by itself.

We're starting to go through quite a process in our home to make it really ready to bring Mikey home - something that's still going to take many weeks to do. It's starting to look like we'll need to make the front living room area a bedroom for Mikey. The nurses will need wide open, simply organized space to take care of our little man - and we'll want to hang out near him when we're home, too. Hopefully he can move into his room upstairs sometime in his first year - hopefully the monitors will be gone by then, too. I hear that kids with trachs get much better at not getting them plugged as they get a little older.

Speaking of nurses, it seems as though we have to integrate them right into our life. In the Care at Home book they gave us, we have to provide them places to eat meals, take breaks, put their clothes, etc. I gotta tell ya - this is not a process we're going to enjoy. How many of you have a house you'd want other people in 16 hours a day, everyday? I can't imagine what In home nurses talk about over their watercoolers...

"Yeah my family had a huge argument last night"...
"The mom and dad at my house did it 4 times!"...
"Do they ever clean the grate on the front of their refrigerator?"...

Can you imagine? I still can't even really picture it.

Btw - to all that read this. If you know nurses, tell them all that we're looking for home care nursing in the coming weeks. Let them know to send me all the names and phone numbers of any nurses that are interested. Send them to mike at thinwires dot com. Turns out there's a massive shortage of nurses and he can't leave the hospital without home nursing setup. This could be quite a struggle.

In other news... my office is very nearly completed in the garage. One more coat of touch up on the walls and paint the trim and we're all done! So many people have helped so much - but Vic, Andre and Chris really made this whole thing happen. Thanks so much to everyone that swung a hammer, painted a wall, wired an outlet, etc. I can't believe we're actually done with it all. It looks really great - and I know I can close out the world back there and focus on work, when it's time to.

A note from Daddy.

2007-03-31T13:39:00.000-04:00

I've gotten some comments and emails about the kind of stuff I'm posting in Mikey's blog. Perhaps some of the content is shocking, scary, somewhat private to Mikey or otherwise not necessarily what you might expect posting in a blog about your newborn baby.

Typically I'd agree with all of that.

But none of the past six weeks have been normal, to say the least. And I've found that with so many people in our lives wanting to know what's going on, when I had to take the phone calls from so many people, I just couldn't recount each day's most important elements over and over. All of you out there that are our close friends and family please understand that I'm not saying not to call - sincerely, your calls have been very appreciated. It's more that writing in the blog is on my own terms, time and current mental condition ;), not just when the phone rings. I'm also trying to make sure that what's said is really what happened, and not a version of what happened.

Some of the pictures are sort of tough to see because we all dress our babies up in their Sunday best and show off those pictures. The one of Shell is tough, too - mostly because most of us know what a beautiful woman she really is, both inside and out. That all being said, some of us can go a whole lifetime without seeing battle wounds right up close. I'm proud of my family for the drive, strength and guts (literally) hanging out, trying to make their mark in this world and to survive. Ultimately our instincts are for survival and fighting to catch another breath - and I'm humbled by both of their courage during their epic struggles. Hopefully seeing these pictures can inspire someone to try harder, struggle more, LIVE harder. I know I'm inspired by both of them.

One step forward, 16 steps back.

2007-03-30T21:28:00.000-04:00

For all of you that tune into Mikey's blog with a box of tissue nearby, make sure you're stocked up.

Today we came in around noon (Shell and I) to see Mikey. We had an appointment with a couple of Sisters of our Lady of Mercy, praying over Mikey. They had part of the vestments of Sister Faustina, a saint from Poland that is well known for miracles happening after a particular prayer they say. What's weird about this experience is that Shell and I both recounted how we felt about the prayer a few hours later and we both had bad feelings while they were praying. Kind of weird and I'm sure not caused by the kind ladies praying for him, but strange, nonetheless.

After they left, we were setting up to hold Mikey when his face turned the brightest red I've ever seen - boy was he pissed off at something. So we scooped him up and put him in his mommy's arms and he seemed contented...for a while anyway. It seemed every time she moved him around he would get really upset and turn red again. With the trach, we don't get to hear the normal crying that would go with the rest of the act. Think baby-mime, if you will. So Shell asks the question, why is he crying? A brilliant nurse says "Oh honey, probably one of the hundred reasons a baby might cry." So Shell and I do the Mommy and Daddy thing and check his diaper, I ask to vent his gtube to see if he needed a burp, etc. Meanwhile he's still super pissed and red. So Shell says, "I don't think this is normal pain. Mike let's look at the wound." We open up his blanket and shirt and find his bandage over the gtube incision a brownish red color and soaking through and running down to his diaper.

Then Shell says, "what's that purple thing that's coming out from under the gauze?"

Turns out it was his liver.

Yup, his stitches had broken open and his Mommy had to outsmart the nurses again and figure out what was wrong with her son.

So I'm going to write a book called the "One Hundred and ONE Things that a Baby Might Cry About". Number 101 will calmly say:

"When all else fails, check his belly to see if your little one has popped his liver out onto his belly button. Call Surgeon immediately to stitch back in place"

So, Mikey was then rushed to an emergency surgery to have it cleaned out and closed up again. Only this time, since the muscles had allowed the stitches to tear through, they had to put a sort of screen over the wound and will let the wound heal from the inside out. For those of you trying to capture a mental picture, it's about a three inch long by inch and a half wide hole in his belly. Look closely and you'll see his liver staring at you. It'll take the poor little guy several weeks to have the wound grow over.

Surgery went well and he's stable and resting well on some narcotics tonight. He's a tough little dude though - just like the other night, about an hour after surgery he woke right up to his Grandma's hands and held her fingers for a couple hours. He got his meds quite a bit faster tonight and went right back to sleep.

Here's a picture of me kissing my boy goodnight.

Hello world!

2007-03-29T20:38:00.000-04:00

So today was pretty darn cool.

When I came in around noon, Mikey was off the vent from surgery. Then we managed to get him back in his own crib, instead of the surgical table he had been on - a good sign that he was progressing well. The tube on his neck is just humidifier air - not a vent, just warm, wet air to keep the new trach moist and healing well. Note the heartbreaking IV coming off the top of his head.... a vein is a vein, according to all nurses. (I guess we can wait another day or so for full feeds to not have anything sticking out of his head or face.)

If this wasn't good enough, Mikey did some more amazing stuff. If you look closely in the next picture, you can see he's actually grabbed onto and brought to his face one of our baby toys!

And then, drum roll, please.........

I was suctioning Mikey's mouth, when all of a sudden, I felt this tugging back on it. It felt like something was sucking the suction tube into Mikey's mouth. Then I realized he was! He was sucking on the suction tubing! I could feel this gentle tugging and the lips moving around it. So I pulled it out and grabbed the binky in his crib and stuck it in. Would you believe the little boy that I've been told might never, ever do even this, sucked on his binky for about an hour?

I just about started yelling right then and there. Turns out some of the smallest things in life can be some of the most rewarding. I think this is one of the many lessons my son is going to teach the world in his small way. If you're not tuned in, you lose. If you are, what a thrill to be with him!

My boy had surgery today...

2007-03-27T00:24:00.000-04:00

So, Mikey had his G-tube and Trach put in today. Thankfully it was pretty uneventful and went well. The surgeon had to open him up instead of completing the g-tube with laproscopes because his CO2 level went up due to pressure on his diaphragm. No big deal medically, but Mikey will be left with a 3 inch scar on his belly.

Afterwards in the NICU, I spent some time with him as he recovered. The tough little guy actually started to wake up very early from the meds. They had to scramble to get more into him to calm him back down again because he could likely feel the pain a bit. Thank God babies don't remember the hell they go through to get home, eh?

Here's a picture of him after the surgery - it's nice to see him without one single tube on his precious little face. The red is just from tape coming off - so far that's always resolved itself in a day. I put it up because maybe by seeing this on my baby, none of you will see it on yours, ever. I do feel he is going to start blossoming now that we've gotten his airway and feeding situations in a quasi permanent state. He'll be able to deal with his environment better and grow better. That being said, plastic accessories weren't meant for kids. They were better on my GIJoe guys.

The black cords are pull strings to pull the trachea up to the skin for easy re-insertion of the trach should it come loose for any reason - like him being a wise guy and pulling it out. He will not have the ventilator tubing attached there forever - that's just to recover from surgery. The bandage down below on his belly is where they went in to fix him up and attach the G-tube.

Sleep well buddy.

On the eve of his surgery...

2007-03-25T21:09:00.000-04:00

I'm feeling pretty good about our decision to do both surgeries with Michael at the same time tomorrow. Not that I like the situation at all, but if he needs to have this stuff to come home, let's just get it done and heal him up and bring him home to his sisters.

Today we did a very special thing - something that we'll do again once we bring our boy home and celebrate the right way. We had our priest from St. Chris, Father Chuck, come over and baptize Mikey with his Godparents Chris and Gretchen and a special "mom" of mine from my childhood, Kathy, aka Mom2. It was a pretty special event - something quiet and simple with people that love him. And he was the best little kid today! I didn't have to suction him at all, and he opened his eyes most of the time. We even heard him singing a little bit - I think it was mostly that Chris was holding him - but it turned out he had to let a little rip out. :)

He's holding the cards his pretty sisters made for him. I can't tell you how much it does my heart good that they accept him and his not being home with us so well. Michailey in particular has really seemed to turn up her love towards us when we talk about him, too. The other night was really special when I was telling her about Mikey's surgeries and she just stopped what she was doing and hugged me. She told me it was ok and that Mikey was going to be ok. A 6 year old telling her Daddy it would be ok was just stunning to me. She's simply an amazing kid.

Momma's love and fishing. ;)

2007-03-25T09:14:00.000-04:00

I just had to post this picture, too. There is nothing else in the world like a mother's love. He reacts to her like she hasn't even been gone a moment. When she holds him and he tries to fall asleep, he can't because he keeps opening his eyes to look at her! It's amazing to watch.

Hopefully soon we'll have some pictures without any tubes attached to his face. There'll be a little collar with the trach on it, but if that helps the little guy breathe, I can deal with it. I'm sure when I see it for the first time it'll be a little rough, but mostly it'll be ok. I think the hard part for parents is getting over their hopes and dreams and letting their baby set the tone for his childhood. Anything he does will be awesome to see and watch, and perhaps I can still teach him to put his own worm on the hook. If I can't, I'm sure he can come with me and enjoy the warm air by the lake and listen to me tell him all about the fish we're trying to catch.

I believe that when he gets home he's got some surprises in store for us...don't you?

Bad day / Good day

2007-03-24T18:56:00.000-04:00

So yesterday was pretty rough.

It started the night before yesterday, really. I was sitting in the NICU holding Mikey when the attending Doc came over and pulled a rocking chair with her to sit with me. I could already see the fact that she intended to sit down was a sign that the conversation wasn't going to be any fun.

So, she informed me we needed to do both the G-tube as well as a tracheostomy. Essentially Mikey isn't able to handle all of his secretions as well as any reflux from his belly. He isn't gagging when he should and protecting his airway as most babies would. I've come to think of his issues more as a basic wiring problem than damage. Perhaps I'm naive about it all right now - but I just can't believe that a baby that responds to my voice, looks in my eyes and connects with me, touches my face when I give him eskimo kisses is just not there inside. No way.

Anyways, I think the nurses had been preparing for the Doc to drop the bomb on me because they all told me it was ok to cry. Apparently (this happened in the ICU with Shell, too) everyone keeps expecting me to bust and just implode and turn into a puddle in the middle of the hospital. They can all keep waiting. I've had my moments, and they've all been in private and when I felt comfortable enough to let my emotions go. They told me that they knew I was a 'tough-guy' kind of Dad, but that I needed to let it out. Whatever. Like I need to show weakness and vulnerability DIRECTLY to those I already feel that way in front of. What a waste. The nurse hugged me and I really think she thought I would just tear a river loose right at my son's bedside on her (a complete stranger) shoulder. (Angel, the jackhole wacker also applies to medical degree folks, too.)

My response was that we needed a meeting with my wife and that it wasn't really right to have these discussions without her. If they want me to schedule meetings with them, the least they can do is have the same respect back. And I called our pediatrician for a second opinion to sit in.

So that brings us to yesterday.... My Mom and Dad joined us, along with our pediatrician, Dr. Vaughn. We all sat down around Mikey and started talking about the pro's and cons of doing the surgeries at the same time, versus different times, etc. My feeling was that if it was inevitable that he needs both and the risk of doing two at once wasn't big, then he should feel as little pain as he can. We might not be able to give him every little selfish thing we had planned on in his life, but I made a promise to myself that day that he'd feel as little pain as he had to, and when he has pain to endure that we'd be there with him for it all.

And, as folks who've read this blog may have guessed, I asked the docs the same question as always:

"If this was your son, what would you do?"

The attending gave the same gutless, no clear answer that the other residents did. Our pediatrician looked me straight in the eyes, took a deep breath and thoughtfully said, "I'd do exactly what we're proposing."

I realize now that it's not about residents or attendings, but quality of Doctor that gives them the ability to take a stand on something and give you their real feelings.

It was kind of hard to swallow and when the docs left the room, Shell and I had one of those defining moments in a marriage. We both saw pain in each other's eyes and got stronger for the other one. We talked out all the steps and what we thought was best for Mikey. We both decided on the least painful and most reasonably expedient way to bring him home. Hospitals only get people sick and the longer he's there out of his tender first year the less chance he has at being a healthy child. We're not disillusioned to the fact that his current situation doesn't show lots of light at the end of any tunnel - just enough to want to make damn sure he give him everything we can get for him right now. All the way through this, deep down I've only wanted to be able to look myself in the mirror and be able to know in my heart that I've done everything for my family I could. That I would make the best decisions I could with the information I had, and to do it all with respect to the human being in my care, whether it was Shell or Mikey. I've realized fatherhood is different for different people, but I've chosen to stand and deliver and not back down and run away from the frightening situations that keep coming at us. I don't say this looking down at anyone else in these kind of horrible situations or that I'm doing everything right - not at all. I just want to make sure I've upheld my vow to Shell of "in sickness and in health" and stood by my son and given him the best shot possible at the best life he can have. It's funny how you don't have vows with your children. Maybe that's because a vow is a joint commitment - but I think perhaps it's not a bad idea to look your baby in the face, no matter what age they are, and make sure they know that when you make a promise you'll keep it. When they're hungry, you'll feed them with the best you've got.When you see them in danger, you'll break your neck to save them. Wouldn't this world be better if everyone did that? I can't imagine anyone teaching their son to blow people up if we did.

Sorry for the soap box.

Turns out the biggest obstacle to all of this is the post-surgical issues the trache causes. He can't be discharged to his parents care without at least 8 hours of in home nursing, which, surprise surprise is not covered under most insurance plans, including ours. So, get this, we actually have to be turned down by medicaid, to apply for a medicaid waiver to cover this. It will likely take 4-8 weeks to get the rejection, apply for the waiver and get it. Then we have to hope that the agency can find an LPN that will fit with our schedule...meanwhile, the surgery only take a week or two to heal from and be ready to come home. Yup, you got it, he's going to sit at Children's Hospital until PAPERWORK is filed! I asked if I had the money to hire someone directly until the paperwork was approved and they all looked at me if I was crazy. Crazy to want to bring this baby face home?

Today was better though. We met a couple that had a baby boy a little older than Mikey with both a Gtube and a Trache. They allowed us to come to his bedside and look at him and ask questions of the nurses and them, etc. It's like this family was in a parallel universe with us. This was their third child, and the only one with problems. Michelle and the baby's Dad even shared 'miraculous' recoveries in common! 9 months ago he had a major heart complication and was in the hospital for months with both a trache and a g-tube himself. Unreal! He told us that only 2% of people survive what he had - Michelle's odds weren't much better. Their baby didn't have a traumatic birth, just a minor development problem that he should likely get over later in his life.

But wow, it was nice to not feel to alone in this world. To know other Moms and Dads had to see the little white plastic tube on the collar around his neck and to put feedings into a tube rather than the sweet bonding practice of nursing or bottling your baby made it seem just a little bit easier. I know it's going to be tough, but man - to not be alone is worth a lot of bandaids on your heart.

Surgery got cancelled

2007-03-20T11:55:00.000-04:00

So, I started the blog a month into Mikey's life, and I'm trying to play catch-up before I forget everything, but also to keep up with where he is everyday.

Yesterday was a tough day for Daddy - when I came in, he had been attached to an EEG machine with a video camera and audio recording to take a 24 hour EEG to see if his seizures have subsided or lessened and to explain what some of his tremors might be, if they are not seizures.

On a great note, Mommy got to come and visit yesterday and hold him. She really really really loved seeing him. His eyes would just not close once he focused on her face. The bond is still there, even though he hasn't seen her in a while. It was really great to see her smile that way about him. One bad thing that happened is that he was running a fever and they had to start antibiotics and cancel surgery for today. So we wait for more blood cultures to see if he has an infection or not. It's unreal how everything just continues to move forward and then have slides backwards. I watched it over and over with Momma, but I guess I naively thought we might be on a roll with Mikey.

Big sigh.

My beautiful wife...

2007-03-20T01:32:00.000-04:00

I realized that I hadn't posted a nice picture of my bride in this blog and that was a mistake. The pictures here were to show beauty through awful nightmarish circumstances, which is unmistakable on Shell's face - however, it's only fair to show her looking her best, too. Then all of you can see the beauty I'm blessed with spending my life with - waking up each day to her smile (ok, she doesn't smile in the morning most of the time, but I have my fantasies.;) I've loved this woman since I first met her, and I hope by writing about her in this blog that all of you go look at your spouse as you did when you first fell in love and make sure you be just that much softer on them in the tough times.

About Mommy...

2007-03-19T20:44:00.000-04:00

Even though this is Mikey's blog, it would be a horrible mistake to not set the scene by including some of the story about his amazing Mommy. It seems impossible for me, now that we're 31 days past the worst day in my life, to think about what I witnessed in the ICU where my wife laid for 23 days.

This picture is from 5 days into dealing with this nightmare - she was in total kidney failure, respiratory failure and yet totally conscious. She was trying to smile here so I could show a picture to our daughters before bringing them in so they wouldn't be as afraid of what Mommy was going through. Even in this photograph, I can see her amazing eyes, pretty smile and courage to face anything.

There's many stories about those early days when she fought for her life - with all of us just hoping that her 'toughest girl you know' spirit would be enough to overcome this wicked evil. The one that seems most important to tell is the one where she saved her own life.

On her second full night in the ICU, I finally decided that I would make everyone happy and go to my room and sleep. Pretend to, anyways. I was sitting on the bed around 3:30am when my cell phone rang. It was one of the resident doctors in the ICU, asking me to come up immediately to speak to them regarding my wife's 'deteriorating' situation. So I did what I would think of later as my own personal fire drill and threw back on the clothes nearest to me and proceed to run down the hall, up the stairs and down the hall into the double doors of the ICU. The doctor and one of the anesthesiologists had a consent form in their hands for a drug called Factor VIIa. It had been discussed earlier by her hematologist and OB and pulmonary docs as an "heroic effort" drug. Something we'd do only if there was no hope of her surviving with the supportive care they were giving her.

He handed me a printout of a drug description in "doctor-ese" explaining all of the stuff you'd expect about a drug - uses, success rates, risks, off label uses, etc. He explained that this wasn't even considered an off label use because so few people with an amniotic fluid embolism and subsequent DIC didn't live to have it used.

Alarm bells went off in my head when I asked what would become my bellwether question:

"What would you do for your wife?"

His answer:

"I don't know, I'm not in your situation"

Trust me when I say this - that's a bullshit answer. It's a doctor that doesn't have a wife, kids, or perspective on what those things would be like. Never trust a doctor that can't, in the blink of an eye, say "I'd do this, this and then that." If they hesitate, that means they don't have the guts to make big decisions or lack the experience and basis in life to be making big decisions.

So I said I needed to talk to my wife.

I went in her room at 4am and proceeded to have a conversation that will stay with me for the rest of my life.

With tears in my eyes, I touched her hand and asked her to wake up and talk to me. (she had an airtube and an NG tube in and could not speak, save for our abiility to speak in sign language).

She flipped on the light and heard me say, "Honey, they want me to give you a drug that might kill you." Without blinking an eye, she asked me if I thought she was going to die, because she didn't think so. If she could have only seen herself in a mirror! The swelling from 20 pints of blood, tons of blood products and over 36 units of fluids had already started to set in and swell her into what I called the "Michelin Man" phase.

She then asked me for the clipboard and pen. She actually wrote two words at the top of the page:

Pros Cons

Drew a line down the middle and stared at me intently to help her fill them in. We talked about the risks, I read the paper further and further and kept answering her questions. She told me she wanted a second opinion, to which I went out and had them page the attending doctors that I knew. She asked if I could transfer her to another hospital if I couldn't get good care in this hospital.

What I realized was that my soul mate was doing for me what I knew I should have been doing, but wasn't thinking straight enough to do. She was so CALM! I've never seen such bravery in the face of battle. There's no war movie that could capture the spirit and courage that I witnessed that night.

She asked me about our girls and that if she didn't make it that I would be a good father to them both, as well as our new son.

During our conversation one of the doctors that I had paged came running into the ICU (around 5am) and made sure Factor VIIa was NOT administered. He had consulted at 4 am with 6 other hematologists around the country and asked for their opinion, which was unanimous.

A combined 200 years of training and experience was matched wit for wit with a woman lying in a bed fighting for her life yet still managing to have control, dignity, honor and love.

That is the story of a woman that I'm lucky to have met, let alone kissed, married, had children with. This is just one story about her courage, strength and love. All of which she passed on to our son, who was lying one floor down, almost right underneath her very room. I have seen the same strength in both of their eyes and it humbles me, honors me and gives me the strength to see the light at the end of the tunnel our family is walking through right now.

Some pictures from the past month...

2007-03-10T12:39:00.000-05:00

Mikey's sisters Michailey and Emme came to visit a couple days after he was born. I realized that even in the midst of a horrible, horrible situation, having to tell my girls that Mikey and Mommy were sick, I still just plain love being their father. I hid tears behind my eyes all afternoon that day as they met Mikey and then went and saw Mommy. They accepted and loved them both, just like I knew they would. The hugs and love they showed me that day would prove able to get me through that nights disasters of a grand mal siezure and heart attack for Mommy.

This is three living generations of the first son of the first son of the first son of a man named Joseph Stephen, my grandfather and Mikey's great-grandfather. He was one of the greatest guys I ever knew and is one of my inspirations in life. I can only hope I've passed on some of his wisdom, strength and love. My father Robert Michael is the man that raised me to know how to love a son, how to care deeply for a wife and love his family, through anything that happens along the way.

Notes from Mikey's Guestbook

2007-02-28T01:49:00.000-05:00

When Mikey was in the NICU at Sisters', I started a guestbook for people to sign when they came to see him. He had lots and lots of visitors. I can't even tell you how much it meant to me that he got to spend lots of good time with so many people that love him. So many people did things for us and Mikey during this time that it's hard to find a way to say thanks. This picture is with his Grampy - he's spent so much time with him. I know he feels that Mikey's going to make a good recovery - and when he does, it will be in part because of the time he spent holding him. Here's some of the notes left for Mikey in his book - in no particular order.

"Ohhhh, my beautiful nephew! We had a beautiful visit. I got to change his diaper and held him for 45 minutes. We read a bible story, too. Love you baby boy!" --Aunt Dawn

"Aunt Audra and Mikey got to share a very special time together! Holding him for the first time was probably more theraputic for me than for him. I hope he felt all the love I had because he is perfect!" --Aunt Audra

"Aunt Jenna in for another cuddle at 1pm. He laid quietly. Stretched often and was loved much. During the visit Aunt Audra also stopped by to give him her lovin'" -- Aunt Jenna

"Hi Michael, This was the second time I was able to hold you and it does my heart good! Keep up the good work and I'll see you soon handsome. Love, Gretchen"

"Hi Buddy - it's Daddy here. You and I had a really nice time tonight - almost no suction! I love hearing your little voice! You sneezed all over me - I've never been prouder!" - Daddy.

"Hi Muckey Jr! This is your Daddy's Mom. You have been doing great. I have been with you at night for over 2 weeks. We have been talking about how much everyone loves you and the day you will be coming home. I love you and wish only the best for you." -Gamma

"I miss you. I love you. Love Michailey" - Big Sis #1

"Emme loves you" - Big Sis #2

"Mamma says 'Love and hugs my little bug'. Mommy's doing much better and you're going to come up to see her tomorrow little boy!" - Daddy (and Mommy)

Shell and I want to thank everyone who has visited Mikey over and over for sharing your love with him, especially when we can't just bring him home and hold him for days at a time. I know it had an effect and helped him out of the times with seizures and medicines and the rest. THANKS. It's a small word and doesn't do justice for how we feel in our hearts about what you've helped with, but it needs saying nonetheless.

IV’s, tubes, lights and discovery

2007-02-20T17:06:00.000-05:00

Michael was born with a hypoxic, ischiemic encephalopathy. That means he has a loss of blood pressure and oxygen, which caused an injury to his brain. It caused swelling (you can see how puffy his eyes were) in his head that lasted about a week and a half after he was born.

My little buddy managed to continue to rip out IV’s left and right - just showing the spirit that helped him live through his trauma. We were informed that his cord gas was in the high 6’s, much lower than normal, but had returned quickly after he was born. His cord gas was so low, it was unexpected that he would live. Yet he pushed on in this world.

Michael Joseph Jr. - A tribute to strength, makes his debut

2007-02-18T16:58:00.000-05:00

Our son Michael was born with all the bells dinging and lights flashing - and defied all the odds against him.

His beautiful momma had a rare, complicated and most of the time deadly blood complication called an Amniotic Fluid Embolism (AFE) after her water was broken. This caused her blood pressure to drop and begin cardiac arrest. She bravely fought for her life while Dr. Paul Wopperer calmly and confidently saved both momma and son.

This blog is about his courage, spirit, love, family and Momma. His Daddy is as proud of him as could be, and is documenting the spirit of hope and love that has helped Mikey grow and rebound from this hardest of beginnings.