September 25th, Matthew lived.
September 26th, Matthew went home.
Imagine the roller coaster of emotion we were on. We had gone from finding out our son had Trisomy 13 and learning he wouldn't have much time with us, if any at all. To hearing the positive news at our Care Conference that, for a baby with Trisomy 13, Matthew had relatively few life threatening issues and he had every chance of going home with us. To going into labor a month early and not knowing if having him early would put him at higher risk. To giving birth to a rolly polly, 6lb 3oz, rosy pink, healthy little guy. Healthy except for the occasional failure to remember to breathe.
This is the part of the story that is hardest for me to share. Not because it's sad. It has it's sad moments. But more than that it is precious. It's the part of the story I treasure the most. Because it's the story of our private moments with Matthew. It's the part of the story that only we know. And as hard as those moments were, they were also my favorite moments with him. Because it was in those moments that I felt closest to him. And in those moments I was surrounded by saints and angels. Those were the moments when all the prayers, the hundreds if not thousands of people praying for our Matthew, those prayers surrounded us and held us. They carried us through.
But if I really want to tell his story, I have to share these moments with you. Because the story is not complete without them. I want you to know my son as I knew him. And without the chance to introduce him to you in person, this is the next best thing.
We knew Matthew had taken a turn for the worse. He had some fluid on his lungs. Still his breathing returned to normal and we were hopeful.
The Neonatologist returned to talk to us again. This meeting went very differently than the previous one had. We were told that the way Matthew's chart read, the use of blow by oxygen wasn't approved. We asked to change that. We didn't think that was an excessive intervention. I was glad the nurses had given him oxygen when they had. The chart was changed to note that blow by oxygen could be used at our request. Morphine was also authorized at our request in case he was in pain. We were told that Morphine could be given to ease pain, it was a very low dose, but as a side effect it could suppress his breathing. It would only be given if we requested it. The Neonatologist also recommended that we halt his feedings for the time being. She was no longer very optimistic about him coming home with us but she was quick to add that babies are full of surprises. She wouldn't rule anything out yet.
We agreed to halt his feedings for a time to try and prevent any further fluid entering his lungs. We had to focus on keeping him breathing.
I was worried that when feeding time came he would cry in hunger. But for the first time he didn't. Poor little guy was exhausted. I'm sure his tummy wasn't feeling too hungry after being suctioned.
I had very mixed feelings about that. Relief that he wasn't feeling hungry but also worry that he was getting weaker. I was not ready to give up on the hope that he would be coming home with us.
Around this time I was finally able to get up out of bed and walk around a bit.
For the rest of the evening our families and friends continued to take turns holding and loving baby Matthew.
That evening we again found ourselves alone with baby Matthew.
Again I was holding him when he went apneic. His body stiffened and he thrust his arms straight out. His breathing stopped and he turned purple.
We called the nurses and started to stimulate him as usual. They came in and checked his heart rate. It had dropped lower than usual for his apneic episodes. We really didn't know if he would be coming out of this one.
Finally his breathing resumed. But this time it was extremely labored. He was struggling to catch up on the breaths he had missed. "Agonized breathing."
We started discussing the option of giving him Morphine. I could tell my husband was really struggling with the idea that Matthew might be in pain. His little chest was really working to get those breaths. He was getting tired. His little body was wearing out. I just wasn't ready to accept that yet.
His little breaths sounded like he was saying "Uh huh, Uh huh." I noticed it and then my husband pointed it out. I thought at the time maybe he was trying to tell me yes, he was ready to go. But I didn't want to hear it.
I didn't want him to be in pain but I was really having a hard time with the idea of giving him the Morphine. I understood that I might be losing him. But it really felt like giving him the Morphine might just help to push him along. I didn't want to do anything to weaken him any further. I was still hoping he would turn around.
I was really torn up over that decision. To begin with, I am the worst decision maker on the face of the planet. I can't make a decision over what fast food place to get lunch at. Now I was asked to make life and death decisions for my son. How impossible! So I stalled. Maybe he would get better and the decision would be made for me. I also felt really guilty. I personally didn't think he was really in any pain. Yes, he was catching up on his breathing and was breathing hard. Uncomfortable maybe. But pain? How could I, or any of us, make that determination. Yet, how selfish was it of me to arbitrarily decide that he was not in pain? After all I wasn't the one hurting. It was so easy for me to say, "No, he's fine. Let him continue as he is. I want to keep him with me."
My husband gently reminded me that we were not considering euthanasia. I knew that was true. But it felt a little like we were. I replied that it was one thing not to use any extreme interventions, to "let nature take its course." It seemed like quite another to help give "nature" a boost.
We made the decision to wait on Morphine. I just wasn't ready for that yet.
Matthew's breathing finally did calm.
And we started to take turns holding him.
He looked so very tiny in his Dada's arms.
Angel of God, my Guardian dear, to whom God's love commits us here, ever this night be at my side, to light to guard, to rule and to guide. Amen.
We realized that the Princess and the Peanut had never gotten the chance to give Matthew the stuffed animal they had picked out for him. Before the 20 week ultrasound, before we knew he was a boy, my husband had taken them to the toy store and let them pick out a toy for the baby. The Princess always sleeps with "Bunny" and the Peanut always sleeps with "Elephant." They picked out a blue dolphin and named him "Finn."
We decided to give Finn to Matthew just in case the kids didn't get the chance. We wanted them to know he had gotten their present.
|Our little Super Matt-man|
|Kisses from Dada|
|'Cause "bow ties are cool!"|
|Isn't my lil guy handsome?!|
Matthew had another apneic episode. Again his entire body stiffened. He stopped breathing. This time he went pale instead of dark. We called the nurses but we didn't make a strong attempt to stimulate him. We soothed him instead. We talked to him and I stroked his hair. We held his hand. His heart rate was very low. Again we wondered if he would recover.
His breathing finally did resume. This time it was even more agonized than before. He was really struggling. His tiny chest was heaving. I looked down into his little face. His forehead was furrowed. He was in pain. My baby was hurting.
We started talking about the Morphine again. One of the nurses noted that affecting his breathing was only a possible side effect. They had to notify us just in case. It really helped me to make the decision.
My Bioethics and Moral Theology classes in college came flashing back. The end goal of giving him the Morphine was to ease his pain. Any disruption it might cause to his breathing was an unintended side effect. And it wasn't definite. In the end, his life was in God's hands. We had no real control. I had to give up that idea. Morphine or no, he would either make it through or he wouldn't.
I told my husband I was ready to give Matthew the Morphine.
It was given through his feeding tube. The syringe was tiny, probably a millimeter around and it was filled with about a millimeter of Morphine. I really wondered how those few tiny drops would possibly get down that feeding tube.
It seemed to work. His little forehead smoothed back out. His breathing eased and his chest calmed.
We continued to hold him and talk to him. We said our goodbyes. Told him how much we loved him and would miss him. Told him he could go if he was ready. We told him about the wonderful place he would be going to. We told him about his sister, his great-grandfather/namesake and other family and friends who would be waiting to meet him. We sent our hellos to them.
It was the hardest thing I have ever had to do. But I was finally able to say, "Thy will be done." I was finally able to let go of my lil guy. And as cliche as it sounds, I really did know he would be in a better place.
The city will be filled with boys and girls playing in its streets. Zechariah 8:5
After that we were able to relax. We had said our goodbyes and we could just enjoy any remaining time we had with Matthew peacefully.
I was finally able to do something I had wanted to since Matthew was born. Hold him in my arms and sleep.
My husband and I woke up at the same time. Matthew was still sleeping peacefully in my arms. His breathing was even and calm.
It was time for my pain medication so I called for the nurse.
I looked back over at Matthew.
He reached his little arm up towards his Dada.
And his breathing stopped.
My husband reached over and tucked his little arm back into the blanket.
I told him. "I think that was it."
"He isn't breathing."
We pulled back the blanket. His chest had stopped. His whole body was pale and covered in purple spots.
It was 4:50am. Exactly 36 hours after his birth.
The nurse came in and we asked her to check him.
She checked his heart. It was still beating but very slowly. She waited a few minutes and checked again. It was slowing down. Our NICU nurse arrived. We continued to wait and they continued to check his heart.
Until finally it stopped.
The doctor was called. Time of death was declared at 5:30 am. But we consider it to be when he took his last breath at 4:50.
He was our 36 hour miracle.
I had prayed to have 3 hours with my son. 3. God gave me 36. 36 precious, wonderful, miraculous hours with my little saint. And then He took him Home.
We did not get to bring Matthew home with us. Instead he went to his real Home. He won't be spending Christmas at our house. He will be celebrating the Birthday of our Savior up close and in person.
Let the children come to me, and do not prevent them; for the kingdom of heaven belongs to such as these. Matthew 19:14