Taming the Beast

You might think it's a little mean of me to refer to my child as "The Beast." For those of you who have been lucky enough to meet this little angel you know exactly what I'm talking about. Some might argue he should be referred to as an old man since he burps, farts and has no hair. I refer to him as "The Beast" because he is a grunting and eating machine. He is 4 months old and wears 9 month clothing. He is HUGE.

He has also picked up some strange habits while in the PICU. Most of them extremely odd and unpleasant. He is a TV junkie, loves his pacifier (which he would NEVER take for me at home), and something else completely out of the ordinary...

"Did he just pelvic thrust at me" one nurse asked.

"Yes. Yes he did. Apparantely Parker thinks he is Michael Jackson" I said.

Then he stuck out his tongue and pelvic thrusted at her.

I have no words. We will talk about that when we get home.

He is trying sooo hard to roll over. Of course the one time in his life when he isn't supposed to reach a milestone, he would. Little stinker. Parker is also extremely lazy these days. At home he was starting to hold his bottle. Now he just lays on the bed like a beached whale and let's everyone feed him while he watches the newest episode of Mickey Mouse Club House...while farting like an old man.

It's just extremely pleasant. I kid! I kid! It's funny! We get a lot of laughs from him. He always farts at the most random and awkward times. Like...when a Neuro Surgeon is examining him or doctors are doing rounds. One thing was never in question and that was Parker's ability to eat and pass gas.

When we got to the hospital Parker was a very sick baby. He wouldn't smile, eat or play. Well, after a good 3 days on his antibiotic cocktail he was feeling pretty awesome. Taming him has been rather challenging since he's confined to his crib. He wants OUT ! We are fortunate that he can't sit up on his own. Otherwise, children in his situation, would be sedated for weeks so they can't tamper with their ventric or "brain cord". Casey brought a lot of Parker's favorite toys to the hospital and after we steralized everything he's been playing away. He is such an angel and it warms my heart to see him play.

Parker has spent more time in the hospital than the average baby. Luckily for us, he really doesn't know it any different and has grown very comfortable in his surroundings. Plus, he gets more attention here than he can handle. He is such a ham and is spoiled rotten! I cannot speak highly enough of the nurses. They are seriously gifts. We of course have our favorite. She makes a very bad situation not so bad by being open, honest and genuine. Parker loves her! He smiles everytime he sees her and I don't feel as guilty if I need to step away for lunch or forbid a potty break. She is truly amazing and if she is reading this, thank you! You have no idea how grateful I am to you and I will never forget you, ever!

Days have come and gone and we've managed to stay as positive as we can. Easter was probably one of the worst days we've had here. Not because Parker was sick, but because he has spent yet another holiday in the hospital. It breaks my heart to know my family is 2 hours away eating, laughing and flying kites (we have done this as a HUGE family ever since I can remember). I want so badly for Parker to experience those moments I was lucky enough to have at his age. Instead, he had to sit in his hospital bed. I know I've said this a million times, but it's just so unfair!

Casey and I decided that we weren't ready to celebrate Easter. It's not fair to Parker and it's not fair to us. He doesn't know what Easter is yet and we want to make memories at home with him. Many people offered to bring Easter dinner to us, but if Parker has to sit in his bed, we won't enjoy it. I think that's what people who have never been in our situation don't understand. If he's not there with us, it doesn't help. It makes us more sad and angry at the situation. So we asked our families to hold off and we will celebrate the second he gets better.

After the visitors we had that day left, I was alone. Casey had no choice but go back home because of his work schedule on Monday. He also has so much to get ready for. We are still in the process of sanitizing our house through and through for our little guy. He will be quarantined for at least three weeks when we get home. No people and no germs!

When Parker got transferred to the NICU, I realized that sickness doesn't wait around for holidays. Parker spent his first Christmas in the hospital. I would never wish that for him again. Well, Easter night was a night I do not want to remember. There weren't any Easter Bunnies, jelly beans or colorful eggs. Just like Santa skipped over him on Christmas it seems the Easter Bunny did the same. The only thing left was the seriousness of our situation. When people stop by or call I am for one second taken away from what our life really is. Left alone, it's all too real to me.

I think. I think...a lot.

At about 8PM Parker fell asleep and I decided, I too, should get some rest. Tears immediately struck my eyes as I slid his door shut behind me. Leaving him to end yet another holiday on his own in this stinking hospital. The elevator was miles away and as I got there one of the Nurse Practicioners was also waiting. I didn't care. Tears continued to trickle. Crying in public is no longer an issue for me. I've sobbed in every public hallway in this hospital I swear. I walked to the cafeteria and the only thing available to me was chicken strips and cheese balls. I grabbed them and cried all the way to my room. I couldn't eat or sleep. I just sobbed. I sobbed because of our situation and I sobbed because I am sick and tired of leaving my sweet angel in his hospital bed. The empty carseat in my room is a constant reminder that he's not here with me.

Times like these I pray that Parker doesn't wake up and wonder, "Where is my Mommy?" It wouldn't surprise me if he did because sometimes I wake up from my nightmare and wonder where he is. Except, it's not a nightmare. It sure is real life and it sucks. I always try to hold him before I go off to bed so I can smell him on me. I feel homesick without him and his scent on my clothing helps keep him close to my heart.

I called my husband and cried to him to only realize the situation on his end was maybe even worse. I at least got to kiss Parker goodnight. He had to lay in a cold, empty house without his family, too.

Casey came back to us the next afternoon after his time at work. We managed to escape for dinner. It was once again a reminder that we had to leave our son in the hospital and see the rest of society enjoying their children at dinner. I see babies about Parker's age every time I go out. I see their Mommies and Daddies snuggling them and laughing. It breaks my heart. I am so jealous. Casey always says, "Be patient. Our turn is coming. I promise."

I want so badly to believe him. I have to believe him. This is what I need to keep going. The hope that we will be a "normal" family again, soon. The fear of Parker's diagnosis will never go away, though.

We eventually make our way back to the hospital to make sure Parker is in for the night and sleeping. We find our sweet angel sideways in his crib, so innocent and precious. He was smiling in his sleep having sweet dreams of pelvic thrusting and the hope that I someday introduce baby food because darn it mom I'm starving (clearly).  After a quick chat with his night nurse we head for our room.

As we are walking down the hall we see several pictures of children lined up leading to the Pediatric Ward (I can only pray we are lucky enough to get to since it's considered better than the ICU we currently reside in). We start to read the pictures one by one. There are pictures of children lined up who have suffered beyond belief. Children who have the rarest diseases and have somehow managed to prosper and enjoy life.

Casey says, "Oh my gosh, look at this one. He has Hydrocephalus! Look at how normal he is and how he is smiling in this picture."

I read the entire article praying that he has a similar story to my sweet angel. His is worse. Not only does he have Hydrocephalus, but he has had more brain surgeries because of his Hydrocephalus than I can count. He also has Spina Bifida. Amazingly though,  he is still smiling. He is a beautiful and inspiring little boy. We read on. Eventually we've read all of them and the very last one will stay with me forever. A mother was quoted in the article as saying that her daughter has suffered and unfortunately will be in pain for the rest of her life. However, what she said last struck me.

I looked at Casey as we are about out of fire to continue on with hope and healing for our son. I said to him hoping for a newfound spark to go on, "Parker will leave here better than when he came. Always remember that." 

It might not be where we want him to be, but it will be better. I want to believe that and I have to believe that. I've said those words to myself a million times since yesterday.