*Disclaimer: I've debated about posting this or just keeping it in my drafts folder, but I have ultimately decided to share it. There are other moms out there that may be going through something similar and if it can reassure even one that they're not alone, then that's good enough for me.
I had known for a few weeks that today's visit would also include a talk with a neonatalogist. This doctor is the one that typically coordinates care for a newborn, especially one that may have complications. I guess I expected to have a one-on-one meeting with this doctor, but upon our arrival at the hospital, we were ushered into a conference room with six people waiting to greet us. I just have to start by saying that this was my first time in a conference room doing the polite shaking of hands, exchanges of greetings, etc since I left my old job in corporate America back in 2010. It was weird, yet I was strangely comfortable in that setting. We all took our places at the table and I broke the ice by asking if everyone knew our situation / background / etc. They all promptly nodded their heads and said they knew our history; I'm guessing they had been meeting prior to our arrival to discuss our case (it also didn't hurt that a few of them had file folders with our names in front of them).
The crazy thing is that it became apparent within the first minute of our discussion that the talk we were there to have with them was about Will's quality of life. You're probably asking what in the world I mean by that. Don't worry, though, I'll get to it. Within the first few minutes of the discussion, we had already begun tackling questions and thoughts about what we were going to do when Will dies. Yep, you heard me right...when he dies. There was lots of talk about logistics and the fact that when I have a c-section I'll be out of commission for six hours. Carlton will be able to go with Will everywhere from the moment he's born, but I have to recover, so that means I won't be with him during all of the initial assessments, etc. If he's not doing well, the doctors will try to let us know as soon as possible and they'll make every effort to get me with him as quickly as possible. The tricky part is that there's just no way to know when I'll actually be able to touch my precious son for the first time. That absolutely scares me silly. I don't want to get into a lot of detail behind the logistics discussion because everything totally depends on how Will is breathing when he's born, but it was so disturbing to talk through all of those scenarios. The talk today even went so low as to have one of the team members offer up that they have a list of local funeral homes that can help make arrangements for us. RAW.
Lots of discussion happened today; it wasn't all so dire. Some of it was very productive and some of it was very helpful. I'm also a visual person so I feel more comfortable knowing what rooms Will and I will be in before and after delivery. I guess I don't want that last paragraph to seem all doom and gloom. Honestly, I guess it's just the reality of the worst case scenario. The "quality of life team" is doing their best to try to make sure Will is in good hands from the moment he's born; we just had a hard time not feeling like we were confronted by the death squad today. Carlton actually tried to break the negative flow of discussion at one point by asking how everything changes if Will actually lives. God love that man and his positive attitude...I was so happy when he said that.
This post is disjointed; it's not the way I usually write, but it's what happened today and it's all still so new. I want to write about it because I'm still trying to process it all. I have ABSOLUTELY not given up hope for our sweet boy; I just hate feeling like we have to prove them wrong. It's heartbreaking to have our sweet boy's entrance into this world plagued by so much doubt about whether he'll live or die. I just don't know how else to say it. It's raw. It's surreal. Today was just so much like a business meeting. The austere conference room. The exchanging of business cards. The handshakes and smiles when all I really wanted to do was to crawl into the corner alone. Honestly, I really just wanted to cry, but I couldn't let myself go. Maybe that was a blessing? We were there talking about our son potentially dying and yet it would have felt wrong to cry?!? It is just hard to come to terms with the fact that my child is just another case, just another patient, just another baby. He's my baby and I want him to live. I don't want to talk about chaplains and funeral homes and when his little sister can meet him for the first time if he's not doing well. I don't want them to have our pastor's number in his chart for any reason other than to tell him about our amazing little miracle baby. Ugh.
Tonight, I am praying for that peace I've felt for the last few weeks to come back to me. Today stripped it away. I need that peace back, but praise the Lord that I still have hope. It was quickly restored. After our meetings concluded, Carlton and I went to visit with an OI momma and her precious little boy that was receiving an infusion. One look at that sweet little boy's face and hearing his little coos reassured me that they can be wrong. We are all human and we are all vulnerable. Miracles happen every day. I pray that our little boy is a miracle baby and that all of those morbid conversations we had today were for nothing. Please, let them be for nothing.