I realized we are going a little out of order with a few of these posts, but hey, that's ok! My goal for this blog was to at least get things written down to remember all that we went through and the emotions we felt as we went through them. So, here goes our NICU story...
As things progressed with Luke and we realized that he was going to make it further along in the pregnancy, my doctor thought it would be a good idea for Justin and I to meet with the NICU doctor at Riverside to get a better idea of exactly what would happen before, during, and after Luke's delivery. Part of the fear I was dealing with had to do with the whole not knowing what was going to happen with him when he was born. What did that look like? What would he experience? What type of care would he receive? What would it be like for me? I've never had a C-Section so the whole thing was, and still is, pretty nerve wracking! Justin and I's biggest concerns when thinking about Luke's delivery is...
"Will he suffer?"
"Will he be in pain?"
"Will he be comfortable?"
Those were the questions we really wanted answered. We hoped they could answer these for us.
It was time for us to go into the meeting. I was nervous because I knew this would be a hard thing to do. It was necessary for us to get as much info as possible, but I dreaded talking through these difficult things with the doctors. The doctor escorted us into a conference room, and the first thing I noticed were boxes of tissues on the table. Oh great. This is a sign of what's to come. This is a room where doctors meet with grieving parents and tell them bad news. This is a room where sad things happen. I reluctantly sit down and we begin talking. The first thing the doctor asks me after she introduces herself and the nurse practitioner was...
"Do you guys know the gender of your baby?"
"Yes, it's a boy."
"Ok great. Do you have a name picked out?"
"Yes, his name is Lucas Kent and we also call him Luke."
"Awe, I love his name."
I loved the fact that she wanted to know his name before we did anything. He's my boy. He's real and he's alive and he has an identity. During the whole appointment, she referred to him as Luke :)
The bulk of the meeting was spent talking about the care Luke would receive once he is born. We focused on that more than anything, which was great for us. He will be born via C-Section due to the fragile nature of his body. Potter's Syndrome babies, due to the lack of amniotic fluid, are very fragile. To go through a vaginal delivery could be very dangerous and he would most likely die during birth. He's going to be delivered about 5 weeks early to avoid something going wrong later in the pregnancy. If we were to wait and deliver closer to my due date, the chances of the cord being clamped and cutting off his oxygen supply goes up a lot. We don't want to risk that.
Here is the "short" version of what will happen with Luke after he is born. As soon as they pull him out, he will be cleaned up, just like a normal healthy baby would. I love that. I want them to treat him like they would any other child. His hair will be washed. He'll get a cute little hat. He'll be wrapped up in a baby hospital blanket, just like every other baby you see. Because of his lungs not developing, he will struggle to breathe as soon as he's born. The NICU team will give him medicine that will keep him comfortable so that he won't suffocate. I had horrible thoughts of him laying there suffocating. They reassured me over and over again that he will NOT suffer. There are various things they will do for him so that does not happen. They can give him oxygen in his nose. They will give him drugs under his tongue that really calm him and allow him to not feel pain. We were so relived to know he would be taken care of the moment he leaves my body. He won't hurt. He won't suffer. He will be loved and cared for. Justin will be with him every second while they stitch me up. As soon as they clean him, give him meds, they will wrap him up and lay him directly on my chest. I can't wait for that moment. I can't wait to hold my precious little boy and gaze at his little face and kiss his tiny cheeks. It will be a moment my mommy heart will remember for the rest of my life. As soon as they are done closing me back up, the three of us will go to recovery. No nursery for Luke. He will stay right with us the whole time. After recovery, we will then go to a private labor-type room where our family and close friends will be waiting. That's where our family will meet Luke for the first time. He may or may not be alive at that point. We just don't know how long we will have. He could live minutes, or up to a few hours. Whatever time the Lord gives us with Luke, we will cherish and treasure each moment. Everyone we love will be in that room together, loving Luke and holding him and looking into his beautiful face. When Luke does pass, there is an organization that will be there taking photos of him, us, him with us, with our family, etc. Now I Lay Me Down To Sleep is the name of the photography group and they do this free of charge for families who loose babies. The Chaplain of the hospital also sat in on our meeting, who was very sweet by the way, and she told us that she will completely take care of getting his foot and hand prints for us, a clipping of his hair for us to keep, and will have a plaster-type kit to use to get his hands and feet set into a mold. They will make up some type of memory box for us to keep. That was neat to hear that we won't have to worry or stress about getting all of those things done.
As hard as the meeting was, we walked out of the room that day a little less burdened. We feel that with each hard thing we face regarding his delivery, we become a little less fearful. They say that knowledge is power. I think that's true. The more prepared we are for that day, the less fearful we can be. We are so thankful to the Lord for allowing us to talk through those difficult things. The doctor we talked with was so kind and so thoughtful and reassured us over and over again that her job was to give Luke the best care possible and she would do just that. It's good to know that our son will be in great hands, but ultimately, he will be in the mighty hands of his Creator, the Great Physician, the Great I Am, the Almighty, the Prince of Peace. No better place than that.
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