Tuesday, October 13, 2009

Our Little Fighter

I don't know any other title to give this post. In fact, I may continue to give it to every post in the future. It's the only word that comes to mind when I think of our son.
I was released from the hospital on Saturday and spent the greater part of Sunday at our sons bedside. For Monday, would surely be one of the hardest days of my life. He was due to have his first open heart surgery and he did. Sunday was uneventful for the most part, Paxton remained stable throughout the day and Sunday night I sat with him doing Kangaroo Care (skin to skin contact, like a kangaroo in it's mothers pouch) and even fed him for the first time. He laid in my arms sound asleep and peaceful until I couldn't keep my eyes open anymore. Each time I hold him, the nurses say his vitals are as stable as they have ever been. It makes me so happy that he knows I am there and that he finds comfort in me.

I was also able to get Dave to hold him. He was a little leery of all the tubes and wires, but it was important to me that he hold him before his surgery as we are not able to hold him now for quite some time. I was very proud of Dave and once again Paxton did amazing and snuggled right up in Daddys arms and chest. Of course, I don't blame him, it's one of my favorite places to be too.

Feeding him was insanely scary as he tends to turn blue from all the work it requires to eat when only one side of your heart is working. He did good and LOVES Ma Ma's milk. It makes me so happy that I can do that for him and can truly say that I have never had my milk come in the way it has for Paxton. Even with all of the stress and lack of sleep, it continues to flow. I think because it is the only thing I can do for my son at this point. I feel like I am helping him by making sure he has plenty to eat when he is able.
Monday morning came all to quickly. I woke up at 3 am to pump and could not go back to sleep so I just got ready and headed to the hospital. The earlier I was there, the longer I was able to hold him before he went to surgery. I stopped in the chapel on the way to the CVICU and prayed with every ounce of my being. Then I went and held him for about 2 1/2 hours. When the time came to hand him over, my heart shattered. I was racked with fear. My body was literally paralyzed from head to toe that something could go wrong, that this may very well be the last time I see him alive. I know it's not the most positive outlook, but it's real life. It was a very real possibility and I lost it. I sobbed and cried and shook. I had ZERO control over what happened to my son back there and it was one of the hardest things I will ever do.
The 5 hours passed. I got updates about every hour and a half and each time the phone rang, my body froze. I didn't know what was going to be said on the other end, but each time he was ok. Finally they called and said he was off of bypass (where a machine takes over and does all the work his heart and lungs do) and he was finishing up. Relief. Complete and total relief. Suddenly a weight that covered my body all day was gone. The instant change was amazing. We had to wait about 2 hours to see him. They had to transfer him from surgery to the CVICU and let me tell you there was a lot to get situated and hooked up once he was there.
Eventually we were allowed to see him. Dave and I walked over together hand in hand to see our son who had survived his first open heart surgery at 4 days old. I lost it. I was prepared for all of the machinery, all of the lines, all of the tubes, what I was not prepared for was his color. Our son was so dusky and it made me realize just how closely he was clinging to life.

It's heart breaking, I know. He doesn't deserve this! I am posting these pictures so that one day he can look back and realize how amazing he is. So, YOU all can realize how amazing our son is. He is a fighter. He continues to fight for his life every single minutes and I am so proud of him. Dave is overflowing with pride for his son and it melts my heart. Paxton has taught us so much in his 5 days here on this earth.
We left the hospital and took a break. Went and showered and came back after dinner and Paxton had pinked up considerably. We spent some time talking to him and telling him how brave he was and how much we loved him. Then Dave went home to be with our other two boys and I went home to get some sleep. It's important that Paxton rest as much as possible so his body can heal. The first 24 to 48 hours are the most critical for him.
I called to check on him at 11 and at 2 before I went to bed and when I woke to pump and each time I prepared myself for some sort of news, but each time I was told he was doing great!!!! Again this morning when I called, I was told he had a great night. I went to go see him first thing and he looked beautiful. His color was good and he even opened his eyes for me! He is moving around a bit, although still intubated. He is sucking on his tube as if he wants to eat, but maybe that's wishful thinking on my part since I want him to take to eating so badly when he can. As I have mentioned before, eating is one of the hardest thing and the most common delay in going home for heart babies.
He has had a blood transfusion this morning. His body is having trouble making enough oxygenated blood on its own, but that is normal for HLHS babies even after surgery. His first transfusion did him wonders and I am hoping this one does as well. His chest is still open with the skin sutured over it. This is to allow for swelling post surgery and will be closed tomorrow if all goes well tonight. Dave was unable to look at it, and I will tell you, it is weird to see the heart so close to the surface. Obviously you can't see the actual heart since the skin is closed but you can see it pumping and working hard.
It's amazing what these doctors have done for our son so far. It's amazing how many medications, pumps, drips, breathing tubes and lines he has going on, in or around him. He handles it like a champ. As Dave has said from the get go, "he is a West!" and it's true, he is strong and tough like his Daddy!
I think of where we were this time last week and how far we have already come. How far our son has already come. He is already 1 day post Norwood Operation. How blessed we are to still have him here with us. To see him and smell him and to have his beautiful face to see each day.
I will continue to update on his progress. Each day is different. I never expect to much because these cases are so unpredictable. Prayers are still needed round the clock for our son, so if you have a moment, send one out for him please. He has come so far in such a short amount of time and I continue to drop to my knees in prayer that he stays on this path and we can bring him home to his waiting family! Thank you to everyone who has called, texted, prayed and loved our son! We have seen the power of prayer work. I felt the prayers all day yesterday as our son was down the hall on bypass. I feel them now and our family thanks you from the depths of our being.
The love we have for our son, for all of our children, knows no depths and no bounds. It fills us to the brim! Praise God that they are here with us!

(Side note: many of the pictures that you will see are very dark, we cannot use the flash often as it startles him)

(Pre-Op of course)

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