*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.
All I have to say is doctors SUCK! (not all of them). How about the ones you visited today. It sounded as though you handled yourself with such grace and I am proud of you. I know that it wouldn't of went that smooth if it were me. I would've ripped into those doctors. I don't like the negativity......the funeral arrangements, when u will hold Will, etc. These scenarios are not ones any parent would want to hear at all! So glad ur Hubby was positive and optimistic because that type of LOVE is exactly what sweet baby Will needs. I am praying so hard for ur precious angel. Don't worry Mama....u are doing a great job with ur outlook and faith. You keep blogging and I will keep supporting every step of the way. Lots of hugs, kisses, love, faith and friendship coming your way from Long Island! Miracles do happen! Xoxoxoxo
ReplyDeleteThanks again for your comment! We're ready for our miracle!
DeleteI started following you because of your design projects. Now I check in every day so that I remember to say a little prayer that you and your family will have the strength to face each day, good or bad. I have no words of wisdom and I haven't faced anything like you are going through. But I'm sure I'm not the only person that's praying for you quietly in the background. I believe in the power of prayer and will continue to include your family daily.
ReplyDeleteThank you a million times over for your prayers for our family. It means so much to know that we have so many praying for us and our sweet little boy.
DeletePraying for you and little Will xox
ReplyDeleteThanks, Nicole!
DeleteMary, more than anything I wish that there could be something to do or say to lessen the pain and fear you have. I know there isn't. Only in the past three years (through our pregnancy and since) have I started to understand how precious and fragile pregnancy really is. It seems so totally unfair to have so much joy and hope for your sweet son all the while having to face meetings such as this one.
ReplyDeleteI know it's raw and terrible and.. just unfair. I am holding your family so close to my heart every day. I know that means very little in the pain that you're feeling now, but I hope you can feel the love from friends, family, and internet strangers being carried to you and your sweet boy.
I love your husband for being the man you need. He sounds wonderful. I love how much faith you have and how strong you are despite everything you face. I will continue to hope for and believe in miracles for you. I also hope that you can find peace.
I'm beyond happy to report that my peace is coming back! This week has been tough and I've spent lots of quiet time reflecting on everything, but I know that I have to remember that we are not in control. This little boy is going to be a miracle regardless of what happens! Thanks again for your continued prayers and support! :)
DeleteOh Mary, my heart just breaks for you guys over and over again :( I can't imagine how difficult those discussions were for you and Carlton. You know we are praying and praying and praying some more for little Will. He is God's Will in more ways than one. I'm here if you need an ear. I've had 2 c-sections and I'd be happy to talk about that too. ((HUGS)) from across the miles! We love you guys!
ReplyDeleteThanks again for all of your support, Mandy! You really brightened my day yesterday!!!
DeleteI too started following you because of crafts and design. I check in to see how things are going with you and Will. My heart goes out to you and your family. You are an amazing woman and truly an inspiration. I will continue to keep you, Will and your family in my thoughts and prayers.
ReplyDeleteThanks so much for checking in on us and praying for our family. We are beyond blessed to have so many amazing people praying for us.
DeleteJust curious, what was the team's response to Cartlon's inquiry: "What if he lives?". Yeah, they do not have a crystal ball, and just like I told Carlton THIS doctor (and OI Dad) believes in miracles, and just like you were, we were told our son's condition was lethal, he will be 3 in April,alive and well, still proving those "docs" wrong. I am going to tell you what I have been telling you guys all along - these kids have a curious habit of proving the "experts" wrong, over and over again. Keep the faith. We will be thinking of you and are here for whatever you need - heck, I can talk to your team if they would like too!
ReplyDeleteLots of love from Deb,me, and Ethan.
We appreciate the support from your family so, so much. Ethan is a true example of proving them wrong and we pray that Will can join Ethan in that journey. We have to keep fighting for what is best and we'll continue to rely on your experiences and expertise. Thanks again for EVERYTHING.
DeleteWe had a similar meeting after our daughter was over a week old where they told us her quality of life would be poor, and we should just take her home to pass away peacefully. We resisted and she will be 8 this year and her quality of life, and ours, is great! She proved them all wrong, and I hope your little one will too.
ReplyDeleteWe're hoping for the same thing, too, Jana! Congrats on your miracle girl!
DeleteOh Mary, no one should have to go through that, but I realize it's a part of some pregnancies. Way to go Carlton! Hope is always an option and prayers are always answered one way or another. You are in my prayers as always and I know Will can feel your love for him.
ReplyDeleteThanks for your continued prayers and support for our little Will. :)
Deletei just want to say that there is nothing I can say better than He loves you, Carlton and He know and loves Will. thank you for letting us know so we can pray.
ReplyDeleteGod Bless You all with the wisdom and love to help your little girl understand.
Thank you for your comment and prayers for our family.
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