Wednesday, November 30, 2011

You Said What?

When someone you know has a preemie it's a hard time for everyone. The excitement, pomp and circumstance that usually surround a birth is absent. It's hard to know what to say to help the parents because you know nothing you say will make them feel better but you also don't want to say something stupid and make them feel worse. Here's some help:

-First and foremost, if you don't know what to say, for the love of God don't stay quiet. Nothing made us feel worse than people who just didn't say anything at all. In hindsight we know it was because they didn't know what to say but in the moment it felt like we were either ignored or Munchkin wasn't being celebrated. Yes he was early and it was scary but he was still born and that's still reason to celebrate. If you don't know what to say, say that! "I don't know what to say but congratulations and he/she is amazing. You are so strong and let me know if you need anything."


-Do NOT lead with "oh my gosh, he/she is so tiny" and leave it at that. The baby was early, the parents know the baby is tiny and don't need that constantly pointed out. However, if that's part of what is said it's okay. So tiny and cute, so tiny and feisty, so tiny and look at all that hair! These are all okay, pick a second adjective though and don't just stick with tiny.

-Sometimes just the offer of help means the most. The parents may or may not take you up on the offer but they'll know you're there if they need it. Trust me, some of the people I remember the most throughout our whole ordeal are the people who offered some sort of assistance every time I talked to them. There is one friend in particular that sticks out for me. Every single time I talked to her she would offer a shoulder to cry on. Every time I logged in to Facebook I would have a message from her reminding me if I needed to talk she'd be there for me. I can't explain to you how much that still means to me. I never took her up on it because I wanted to just crawl into my shell and put on a brave front, but I thought about it almost every day.

-DO NOT forget they had a baby and there is cause for celebration. Send a card, flowers, balloons, or whatever you would've sent had the baby been full-term. Don't be overenthusiastic about the birth but don't be too depressing either.

Above all else, be a sounding board. You won't be able to honestly feel what they feel or know the emotion that goes into it. You won't understand a lot of the medical things that are said. But the best think you can do is listen and be a shoulder if that person decides to open the flood gates to you.

Thursday, November 24, 2011

Thankful

I thought I would do a Thanksgiving blog this year since there is so, so much to be thankful for.
This year I'm thankful for:

-The roof over our heads and the fact we can afford the roof and have me stay home with Munchkin.

-The Hubs who works so hard to provide for us so we don't have to worry about anything.

-Our health. A cliche, yes, but this year it's true. Health has taken on a whole new meaning after last December and I am so grateful to be here, healthy and able to live life as normal once again. Graham's health is better every day and considering where he came from, that in and of itself it amazing.

-My family. I have become closer to my parents in a way I never thought I would. Being a parent has given me a new appreciation for my mom and dad and the sacrifices they made to make my and my sister's life better. They have been an amazing source of strength for me over the last few years and never more so than when I've been at my weakest. They raise me up. My sister and brother are amazing. My sister is such an inspiration to me and the fact that she relishes being an aunt warms my heart. She had her first semester law school finals while I was in the hospital and no one told her how seriously ill I was. When she found out how bad it was she was PISSED. I love her for that. :)

-The nurses and doctors at St. Joseph Mercy that saved our lives last year. My nurses: Carrie and Carol who snuck me popsicles when I was tired of ice chips and snuck me to the NICU to meet Munchkin when the docs said no. Munchkin's nurses and doctors, especially: Carrie, Jill, Amy, and Cammie, Dr. Ivacko and Dr. Weiner. They all took a special interest in Munchkin and treated him like family. He wasn't just a patient to them, he was their own child or grandchild and they fought tooth and nail and stayed long past their shifts to help and brainstorm. I am forever in their debt for what they did for him.

-My friends, both old and new. I miss my friends in Colorado so much. I miss being a more physical presence in their lives but being away has really shown me who my real friends are and I cherish them. My new friends here in Michigan are a godsend. Sarah and Kasey have been a breath of fresh air and are so amazing. I would be friends with them even if we didn't have kids! Their friendship has made Michigan feel like home and the girl time I get with each of them is priceless. They've kept me sane and probably out of the looney bin a few times!

-And mostly, I'm thankful for The Hubs and Munchkin. Munchkin is my heart and soul and I never knew I could love someone as much as that little man. He melts my heart and I would've willingly given my life in those fateful days in December if it meant he got to grow up big and strong. Every thing he does is amazing to me because it almost didn't happen; because every breath, laugh, bottle, piece of food, crawl is something that almost wasn't. And The Hubs; we've had our ups and downs like all married couples but he's been there to hold me up (literally and figuratively) over the past 11 1/2 months and has been my cheerleader. He sees the positive when all I want to see is the negative. He takes Munchkin and tells me to go get a manicure/haircut/buy a book/get coffe, etc. He gets up early on the weekends so I can catch up on sleep. He understands that even though I don't have a job outside the home, what I do at home is still hard and time consuming and exhausting. He's an amazing Dad to that little boy.

I hope everyone else had a good Thanksgiving and remember it's not JUST about the amazing food; it's about coming together with the people you love and appreciating what you do have, however much or little that may be.

Saturday, November 19, 2011

You Can Laugh in here Ya Know

The hospital chaplain does rounds in the NICU for parents who want to pray with her and have them pray over your baby. I developed a relationship with our chaplain because I was there every day while she did her rounds and we would end up chit-chatting. She is a very nice, gentle woman and was such a huge help in me keeping my faith when I was so mad at God but still needed his help.

There's one particular morning I will never forget. It was just like any other day. I arrived at the hospital, walked through the lobby, took the elevator to the third floor. I checked in at the NICU desk and they buzzed me through. I walked down the hallway as the smell of sterile hit my nose. My heart still races when I think of that smell. I turned right and stopped dead in my tracks.

Munchkin was sleeping in his isolette but the chaplain and the head nurse practitioner were sitting at his bedside. My heart stopped. They always bring in the chaplain when they need to break bad news and this particular nurse practitioner was close to us. Tears started to sting my eyes; my heart was not beating. They were going to tell me Munchkin took a turn for the worse and they're going to tell me to call the Hubs to be here. I was so scared but I forced myself to walk over there.

I took a deep breath right before they would turn around to give me "the look" and the awful news.

Amy, the NP, turned to see me and....smiled? "Oh, hey Katy. How are you this morning?" What?

"I'm fine...what's...is Munchkin okay?"

"Oh he's fine. Betty just stopped by to drop something off for you and knew you'd be here soon so she waited and we got to chatting."

Moral of the story: If you work in a NICU and just want to "chat" with a religious leader, DO IT AWAY FROM THE BEDSIDE OF THE BABY!!

We all had a good laugh after that and they felt so bad they scared me like that, but it became an inside joke with the three of us. Oh dear lord.

After that, the NICU started to become more of a normal place for me to be every day.

Thursday, November 17, 2011

Welcome to the NICU

Do you want to know what life is like in the NICU?

This song by Rascal Flatts sums it up nicely.

"Stand"
You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright

[Chorus:]
Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

Cause when push comes to shove
You taste what you're made of
You might bend till you break
Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place
________________________________________

Every day in the NICU is a fight. Every drive there and every drive home is gut wrenching. Every alarm that goes off makes your heart stop and makes panic set in even when it's not your baby alarming. Every time you see a baby go home you’re happy but it’s hard to watch because you’re jealous. Every time a new baby fills that bed it shatters your heart. You want to hug the parents and tell the mom in the wheelchair with the hospital gown on that she’ll be alright but the fight of her life is ahead of her.



You feel beaten down all the time. You feel the weight of the world on your shoulders and feel like you have nowhere to turn, no one to understand what this is like, alone and helpless. You can literally feel your heart breaking and your throat hurts from stifling the tears so the NICU staff doesn’t have to pull the curtain because you're a crying basket case…again. Like the song says, you are bent until you break, until you’re literally down on your knees. You think and feel like you just do not have the strength to move on, no strength to spend one more day in that hospital, to spend one more day sanitizing yourself just so you can touch your son, to make the drive home without your baby again and again. You feel like you have no control as you sit there and literally will you child to take a breath when you can see his stats dropping and you know he's forgotten to breathe again. "Come on baby, take a breath. Take a breath; come on, don't alarm. Take a breath." Then the alarm goes off...fuck.

It's the most helpless you've ever felt in your life. Your child is having a hard time taking a deep breath. He keeps "bradying" (where his heart rate drops). He's in his isolette and all you can do is look at him and cry because he's struggling and there's absolutely nothing you can do for him.



You feel like you want to quit, like this can’t possibly be your life, that it’s not your child in intensive care. You want to scream at God, “why did you let this happen to us? Why are we the ones singled out to have this road no parent should ever have to experience?”

You are irrationally jealous of moms bringing their babies home 3 days after birth. It feels like every day you show up to see your son a new mom with a big happy grin is leaving the hospital with their baby. And it's a giant kick in the heart every time. You learn to look at your phone or keep your head down as you walk in because you just can't see that one more time and have people watch you cry as you walk through the lobby.

But when you’re down on your knees and feel like you just can’t do it, you wipe the tears, take a deep breath and pause. You close your eyes and think of the 2lb 7oz dynamo that needs you that is doing everything he can to fight every single second since the day he was born. You know he’s counting on you to be as strong as he’s been in the face of so much adversity. You take another breath, stand up, brush yourself off, and take the step you didn’t think you could. You find new strength and get your second (or 10th or 57th) wind and say, “I can do this today. Just think about today and I’ll worry about tomorrow tomorrow.”

But it's not all terrible. Those stories come tomorrow. :) Here's a snuggle picture to prove it.

Tuesday, November 08, 2011

Hello, My Name is Mommy

I had an emergency c-section with Munchkin. I was quickly prepped and wheeled to the surgery room. I shook the whole time. My mind was completely blank.

While they prepped me they stressed to me and Hubs that most likely the Munchkin wouldn't cry when he came out. Everyone knows that a crying newborn is a healthy one but since he was so early they had no idea what shape he would be in and if he could even breathe on his own. They told us over and over, "just because he doesn't cry doesn't mean he's dead. We'll let you know how he is within a minute or so but don't freak out when he doesn't cry."   I kept repeating to myself "doesn't mean he's dead. Just small. Doesn't mean he's dead. Just needs some support. Doesn't mean he's dead."

Not exactly the warm, fuzzy thoughts I had dreamed about before my son's birth, but the absolute necessary ones in our situation.

Back to the O.R., the doctors are doing their thing and say "okay here he comes." Out he came and........the boy was screaming his head off! Granted he wasn't as loud as a regular baby, in fact he sounded like a little lamb. But a PISSED little lamb. He was crying and promptly peed on my doctor. It was the most glorious thing I'd ever heard and for the first time in days I shed a tear, a happy tear of all things.

As HELLP Syndrome goes, all .5% of us that get it generally get better after the baby is delivered. Well, apparently not me. I ended up getting worse and my blood pressure decided it wasn't done play tricks on me just yet. It continued to soar, my liver continued to become larger and my doctors decided I wasn't stable enough to go see Munchkin. For almost 4 days I relied on family members to bring me pictures and videos and updates.

The first picture I saw without his CPAP machine on I burst into tears; he looked exactly like Hubs. He had a full head of beautiful dark hair and the sweetest face. I loved him immediately and my heart literally ached. My heart was in my throat as I fought back tears.

My nurses were not satisfied with the fact the doctors wouldn't let me get wheeled down to the NICU so they took things into their own hands, literally. One nurse that took a special liking to me decided she wasn't okay with me not seeing Munchkin so she snuck me down one day to meet my son. I was jittery and nervous getting wheeled down the halls to the NICU.

When we entered I didn't know what to expect. I'd never been in a Neonatal Intensive Care Unit before and I didn't know which miniature person in the isolette was mine. They wheeled me up to the side of Bay 10, right by the window and there he was. My son. My tiny, pink, bony, feisty, warm, sweet little Munchkin was right there in front of me. The little man who kicked me in the middle of the night, the boy I'd talked to for 7 months, and the baby who I almost died for. There he was.

I couldn't hold him but you're allowed to "tuck and contain". You put one hand on the top of their head and the other hand on their butt with their legs curled up into your palm. I couldn't help but cry in astonishment, he was alive, he was breathing on his own and, according to the nurses, he could get mad and throw one heck of a tantrum.

Nurse Jill said "hey little man, mama's here" and I smiled through my tears. That's how I met my boy.



Tuesday, November 01, 2011

So you're having a preemie...

I'm not sure how other people react when they find out they're having their child early. I don't trust television or movies to be the guide in that because my reaction to hearing I was pregnant in the first place wasn't the tear-jerking, cheering, jumping-up-and-down reaction you see on t.v. I was in shock, utter shock. Munchkin was planned so we weren't shocked in that sense but one second you're just you and the next second there is a living thing inside you and you're going to be a parent. I cannot even begin to put into words the cataclysmic shift that happened in me the second I saw two lines, and I'm a writer so believe me, I've tried!

A thousand things ran through my mind; boy or girl, how big will I get, what will I look like 9-months pregnant, where will we live when I give birth, will I be a good mom, etc. etc.

Never in my wildest dreams did I think that Hubs and I would have a preemie. If you know me, you know I'm a planner, a list maker, a plan-for-the-worst type of person. We moved to Michigan when I was 17 weeks pregnant and needed to find a new doctor and hospital. We picked a hospital about 30 minutes away because it's the best darn baby hospital in 3 states. I distinctly remember telling my husband it has the best NICU in the Great Lakes region, ya know, just in case. I also vividly remember telling him about my new doctor, "I want someone who will fight for my life if it comes to that. I want someone who will put their foot down and not care who they offend if my life is at stake." Little did I know, that's exactly what would happen word for word.

At 29-weeks my wonderful, amazing grandfather had just passed away after an awful four-year battle with Alzheimer's and dementia. I was quite upset so two days later when I thought I was having horrible heartburn I didn't think much of it since it had been a stressful few days. It got worse and we ended up at triage in the Labor and Delivery department. (The whole story is written in a previous post here)

After all the tests were run and we started realizing things were bad, the on-call doc came in and said the words that haunt me still: "We're hoping to keep your son in for 48 more hours."








Silence....I was stunned. I'm usually quite emotional and cry easily. In this situation I didn't cry. I was shocked and confused, scared of the unknown. I knew I was sick; in fact, I was dying. My body decided my pregnancy was a foreign threat, it couldn't get rid of it so it decided to start shutting down starting with the kidneys and liver soon to be followed by massive hypertension, a horrendous drop in platelets, and, if not treated, a stroke.

I didn't cry, I didn't panic. My mind was racing and blank all at the same time. I was sick, yes, but my son was in danger. HE was my priority, not myself. At this point it was fight or flight. Stay strong or panic and make things worse. I fought...and fought...and fought. They didn't think I'd make it 48 hours without delivering; I made it 4 days.

Neonatologists and NICU nurses came in to talk to Hubs and I about all the things our preemie could face after birth. Words I didn't understand or were too scary to comprehend were being thrown around like surfactant, ventilator, respiratory distress, brain bleeds, etc. All the horrible awful things that can happen to your preemie. I was only half listening partly because I was so drugged up and partly because I didn't want to hear it.

Every minute, every hour counts at that gestation. I fought until my body literally couldn't handle it anymore. I was poked and prodded, blood taken every 4 hours, reflexes tested, not allowed to eat, seeing double, a face of fire due to anti-stroke meds and I endured it all without panic or complaint. Nurses called me the Miracle Mama because I was still pregnant 4 days later. My doctor saw my body was no longer controllable with medicine and it began to fail no matter what they did. My doctor stood up for me and told the NICU doctors my body was shutting down and they needed to take Munchkin out; she was going to save my life and their job was going to start with my son.

My life changed forever on the Sunday I heard the words "we hope to keep your son in for 48 hours." And 4 days later I officially became the mother to the sassiest damn preemie east of the Mississippi.

Prematurity Awareness Month

November is Prematurity Awareness Month and this is obviously a cause near and dear to my heart. My munchkin was born at 29weeks 5days due to my very rare pregnancy syndrome. I plan on updating my blog every few days with a new fact about preemies or an experience we went through. I was going to try for every day but let's be serious, that's a lot of work!

This might be a little hard for me at times because I've mostly kept my feelings and experiences to myself and to a select few people. I'm a very emotional person but can be a private person when it comes to something that's a big deal. To the outside world it looks like I'm going through something hard but being strong. Internally and to only a few people I let myself fall apart.

The point of my preemie facts and stories on here and on my Facebook is not to bring people down or make people feel bad. There's also no cure for prematurity in most cases. This is a month about awareness. One in eight babies are born premature (before 37 weeks gestation) yet there's still a stigma that comes with having a preemie. This is to shed light on the plight of the preemie parent, what we go through, the adversity and dangers our child faces from the second they're born, and to let you in on how you can help or support someone newly in this position.

Having a preemie is horribly isolating. It feels like no one understands, you get irrationally angry and jealous at people who have healthy pregnancies and healthy babies, and no one really knows what to say or do. My goal this month is just to bring awareness so prematurity isn't such a forgotten topic.