Saturday, March 31, 2007

A note from Daddy.

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.

Friday, March 30, 2007

One step forward, 16 steps back.

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.

Thursday, March 29, 2007

Hello world!

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!

Tuesday, March 27, 2007

My boy had surgery today...

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.

Sunday, March 25, 2007

On the eve of his surgery...

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. ;)

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?

Saturday, March 24, 2007

Bad day / Good day

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.

Tuesday, March 20, 2007

Surgery got cancelled

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...

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.

Monday, March 19, 2007

About Mommy...

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.

Saturday, March 10, 2007

Some pictures from the past month...

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.