Monday, November 9, 2009

Holding On

I am sitting here in my room at the Ronald McDonald house that ahem...has no t.v. so instead I am listening to Michael Bubles I Wanna Go Home on Pandora. He says it all when he sings:

I feel like I am living someone else's life. It's like I stepped outside. When everything was going right.  I wanna go home.

This room is empty and plain and I know many have sat in here before me, feeling all that I am feeling right now. My stuff remains in laundry baskets unpacked only touched to grab an outfit to go see my boy.  I am attempting to pay bills and do all of the "normal" things in life that don't stop when you have a sick baby. It is taking me forever to get through this one thing I need to do, but paying bills seems so unimportant right now and yet life is sadly, all about money and bills. The medical bills have already started pouring in. They sure don't waste any time do they.  It's never ending. What is ending at some point, is this stay here. While I can't see when that will be, I am trying to focus on that day. Trying to find strength in how far we have come.  A brand new baby was born this morning and brought into Paxton's room just after birth and I saw flashbacks of my life over a month ago.  The brand new Daddy terrified and nervous hanging over his baby's isolette as a slew of tests were being performed within an hour of being born.  A while later Mom is rolled in in her wheelchair eyes full of fear and sadness.  That was Dave and I, jumping at every alarm and looking wide eyed at doctors and nurses for answers and reassurance.  Here we are on the other side of that. We know what the alarms mean. We know where all of his numbers should be. We know all of the medications and what they are for.  We no longer look like a deer in the head lights.  We have taken this for what it is and I was glad today to be where we are. I wanted to get up and go to that family and tell them that it will get better.  That the insanely scary and gripping feeling will ease. While this journey will always be surreal, it eases and becomes a sort of weird normal.  No baby should have to go through what our babies go through moments after birth. It's cruel and harsh, but necessary to keep them here with us and it works.  Paxton is proof that while it isn't the kindest, gentlest road, it is a road worth traveling because it means the possibility of going home one day. It means there will come a day when we will see smiles and hear laughter from these miracle babies.
Paxton continues to remain stable and do well.  We have had a few scares, but he likes to do that to us and then bounce back. I pray he continues to do so.  He is scheduled to get his g-tube (gastrostomy tube) this is a permanent feeding tube that will be surgically inserted into Paxtons stomach wall and allows us to feed him what he is unable to take by mouth.  Paxton's heart works so hard just at rest that adding the exercise of feeding to it tires him out so quickly. This does not allow him to take in enough food to gain weight.  Therefore the rest will go in his tube allowing him to gain weight and grow.  He is also getting calories added to his breast milk to help fatten him up.  See, he his is basically working out all day, so it is very hard for HLHS children to keep weight on.  A feeding tube is very commonplace round these parts =)and it will allow us to get home faster than the time it would take to get him strong enough to get him to take it all by mouth, which can't even be guaranteed. Paxton will not be on this feeding tube for life. He will have it until his next surgery and maybe for some time thereafter, but not for life.  Some babies go home and start eating once they are out of the hospital. Some need it until after their second surgery, some need it until after their third. Each baby is different.  
He has broken the 8 pound mark, finally, at 5 weeks old! Is starting to track objects and can definitely focus on what is in front of him. We found out he has two big, beautiful dimples when he smiles. He has his Daddy's eyes, even a deeper blue if you can imagine that.  His eyes are so big and tell his story already. They are deep and soulful. He started out looking exactly like Mason, then changed to Austin with the angelic eyes and mouth and has transformed into his own little self. He is Paxton. He has a little of all of us in him.  Daddy and Masons nose.  Mamas lips and dramatic expressions. Austins angelic face and hair (although there is a deep red under tone to Paxton's, like Dave's beard)

He had a rough morning this morning as his IV was accidentally pulled out by a nurse last night and he had to get re stuck this morning endless times (that was the Mama bear facebook post). They even had to shave his hair in an attempt to get one in his head. Yes, I know, how awful! They didn't even get it in there, it wound up in his foot.  I felt so bad for him because the nurse said he was getting so upset and turning purple, which is never good for these babies. They cannot cry for to long or get angry. It causes their respirations to increase and their oxygen levels to plummet.  They turn blue and dusky. So he gets babied a lot and we push the paci as comfort for him.  Basically though, Paxton is an angelic baby. HLHS babies are what we call "high stim" meaning they are easily over stimulated and while Paxton was at first, he seems to have taken on his Daddy's personality and is known as the best, most mellow baby in the unit!  He only cries if he has a dirty diaper, is hungry or if he is getting poked with needles (understandably) other than that he sleeps and stares at the toys hanging above his crib or his Mommy.  
He's doing well. God is listening.  We are blessed. He knows how and when this will end and until then I am holding on. 

For Him, I am holding on.

If you have not listened to the song on my blog called Bring The Rain, please turn on your speakers, scroll all the way to the bottom and click to play that song. It is one of my favorite songs of all time and really resonates with where I am at in my life right now.  

You all should enjoy it too.

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Kami said...

I found your blog on the doll website. I forgot the name of it. My heart broke to see that you had to go through one tough time after another. I too am an agel mommy. I have no idea what you are feeling and going through with your son having HLHS. But my prayers are with you and your family!

Melissa G. said...

Oh he is just too precious!
I pray for God's grace and strength for you all today and that you get to take your son home soon.

~Jamie Kubeczka~ said...

Amazing Jenn! I love all the new pictures of Paxton, he is just the most adorable baby. I am so glad to hear he is doing better, I am always checking in with your blog. My prayers are still with you through this journey. God Bless and hang in there.

~Jamie Kubeczka~ said...

Jenn, I posted a pray Chain for Paxton on my blog, I hope you don't mind.

The Simmons Family said...

Oh the emotions that reading your post brings back! Each time I see that new mom and dad, in a state of total shock, I just want to hug them and tell them it gets easier. But then, sometimes it doesn't.

Paxton sounds like he is doing great!!! I'm glad he's getting the Gtube. Owen had that darn NG for 20 months before I finally broke down and got the Gtube. Best thing I ever did!

I hope you get to go home soon. That last week, when all the tubes are gone, is the longest. I remember asking the nurses and doctors every morning "When can we go HOME???"

Good luck to you!

Gretchen said...

I can only imagine your strength to go through this, for my boys ourney was so differnet but simialar too! BTW... I love Bring the Rain, and the Casting Crows song too.. they are some of my stand bys!

May God Bless you, lay His hand of peace in your heart, bring you comfort in your lonely hours and and fill those around you with the grace that we fighting mommas need!

In His Love, Gretchen

Kaidence's Mommy said...

Hang in there! My little girl Kaidence became ill at 5 months old from a virus that attacked her heart. She was in heart failure with 3% heart function and needed a new heart to live. She got her new heart. We spent July - Jan in the ICU. I understand the emotion as you watch others follow in your footsteps. Being surrounded by so much heartbreak and anxiety. I am here to tell you that miracles happen everyday. My daughter happens to be one of them that they never thought would go home. Today she is 2 1/2 and full of all the energy and love in the world. I also wondered if we would ever see the day that our dear friends that we met in the hospital would ever get together while doing something "fun and normal". It does happen and it will for you as well.
Your life will be enriched and blessed in ways that you cannot comprehend because of this experiance. One day you will look back and wonder how you ever made it through. Angels will have carried you through many days. We will keep your family in our prayers. Faith makes things possible....not easy.

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