Saturday, October 10, 2009

Our One Day Old Fighter

(I am updating in the early mornings, so by date, he is two days old, but because I can't stay awake at the end of these long days, I update once I have had some rest in the wee hours of the next morning)

Paxton is one day old...

and is fighting so hard.
His first day with us started out as a good one. The first report of the morning showed that he remained off of a breathing tube for the night. YAY! He remained pretty stable through the night with some de sats that continue to be monitored. While his color has improved a bit, there is little blood flow getting to his extremities. His arms, legs and feet are cold he must be kept warm at all times.

We are learning very quickly how things are minute by minute with a heart baby. One minute he is fine and the next all plans have changed.

I say that because this morning, I was given the best gift, that I was told would not happen for weeks...

I got to hold my baby boy for at least fifteen minutes. We did kangaroo care (skin to skin) and honest to God the nurse said his vitals were the best they have ever been while he lay peacefully in my arms. All his vitals remained steady and he was the calmest he has been since he was in my belly. He knew his Ma Ma was holding him and he was so happy! It melted my heart, because I have been wondering if he remembers who I am when I talk to him since he was taken away so quickly and now I know that he does...

We spoke to his surgeon today and Paxton will more than likely have his first open heart surgery on Monday. His heart is bad and he has a couple of issues that make the doctors want to get in there now if they could, but they are giving his body a chance to acclimate to the world first and since he is stable, for now, they are going to try to hold off until Monday. I am scared and nervous. They did not hide anything from us. The risks, the percentages, the possible complications were thrown at us again and as he lay behind us in his isolette while the doctor was telling us all of this, I just wanted to scoop him up and run away. Since I cannot do that, we are learning to take it one minute at a time. The morning allowed me to hold him and bond with him and he even got to eat for the first time.
As I said, minute by minute. Yesterday we were told no holding or feeding until after his first surgery yesterday and today it all changed...for the better.

He ate his entire bottle of breast milk like a champ! Chugged every last drop and I was so proud!
He is fighting for his life and hasn't backed down for a second. This morning showed us how tough he is. With wires leading every which way and needles and catheters placed here and there, monitors beeping and alarms going off, he does what he needs to do to get through the hour. He's eating and going potty and all while he breathes at triple the rate that we do. All while he lays in a bed under a heat lamp, surrounded by plastic and equipment that I could never begin to make heads or tales of.
I stand next to him and tell him over and over how brave he is!
Paxton is my hero. He has taught me in two days lessons some people never learn in their whole lives.
His body continues to struggle, as of last night, after a perfect morning. I was headed back for some more Kangaroo care only to find out that his heart is just unable at this point to produce enough healthy oxygenated blood. Therefore, he would be getting a blood transfusion, the first of many I am told.
Minute by minute...
Things can change in a matter of moments and that is what happened. Dave was there showing him off and the nurse said that literally the minute he left, he had an episode and his blood gases dropped and a transfusion was now neccessary.
Whatever he needs is what we will do.
Then I called to check in before I tucked in for the night only to find out that he stablized enough that they held off on the transfusion.
Minute by minute...
I just wish I could take this all away for him. I wish I could do this for him. He is so amazing, perfect and beautiful. It just doesn't seem fair, but we know this is how it is and we continue to love on him as much as we can. We let him know we are here fighting right along side him and we let him know how brave we think he is. We tell him his brothers are waiting to meet him and that he has countless people pulling and praying for him. He had lots of visitors today. He got to meet his Grandpa, his Uncle Adam. Auntie Sha Sha and Me Me have been here and see his progress each day. Even a bunch of his "uncles" (Daddy's best friends) made the trip to show some love. He is loved beyond measure already and his Mommy and Daddy are so proud.

I will be discharged today and will try to update after our evening visit. Pray for a good second day of life for Paxton. Pray for an easy day with little complications. Pray for his rest and comfort. Pray for Monday. Pray that in the end, he will be home in our arms with big brothers running circles around us.

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Christin said...

At every updated post I sit hear wiping the tears from my face, unable to comprehend what your family must be going through. God is using your beautiful family to change everyone you meet. I am truly forever changed. You can see the love pour out of you as you look at your son, it's amazing. We are praying, and will continue to pray for your family and little Paxton.
'For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.' Jeremiah 29:11

Hilary said...

Oh my goodness, the pictures of you holding Paxton brought tears to my eyes. Jenn, I am so, so glad you were able to hold him! He definitely knows and loves his mama :)
I am praying for you all. I clicked on Paxton's picture, looked at his precious face and lifted him up to the Lord for protection.
He is one cared for little guy and I pray he will be home with you and your hubby and his 2 bros SOON!

Lena Costain said...

Hi Jenn (and David),
Wanted to let you know that I am praying constantly for you guys and
Just wanted to let you know that as I follow your journey on the blog, I'm reminded of how exhausting this time is for you. I know things are a rollercoaster ride and the future is uncertain, but stay strong and keep the faith! I am only a phone call or email away. This time is so emotionally exhausting, but know that God is in control and He is orchestrating every detail. Your family is surrounded in prayer and love. Lena :)

Rayna said...

God Bless you and your family Jenn. Paxton is a fighter based on your post. We are all thinking and praying for you.

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