Here is an update about our babies for everyone who has asked.
Thank you so much for asking and for continuing to pray for us.
Tom and I had a long, hard day at Johns Hopkins on Thursday but it was well worth it. The update is we got to meet with a chaplain and a neonatologist, who answered so many questions for both of us about what to expect for babies with limb body wall complex.
We take a selfie every appointment we go to together, which might be strange but it’s one way of documenting everything and each appointment is one step closer to meeting these precious babies.
Our prognosis is the same. The doctors expect both babies to pass soon after birth. We sat in a conference room and a doctor explained step by step how our babies will be born (via c-section) and how each of the expected limitations may complicate their survival. She started with breathing- each baby may have trouble breathing as soon as they are born. She detailed what the doctors will or will not do to assist them at each step.
It was strange because the conference room was so normal and our conversation was comfortable and yet sitting there all I could think is, this is the hardest thing we will ever do, this is the hardest thing we will ever do.
All of it- of course.
But we are doing it. By God’s grace we are doing it. We are able to fully accept what the doctor told us. God’s grace y’all. Any time you can use the term perinatal hospice and not be a complete mess- you know God’s got you. He gets all of the glory.
The doctor and chaplain were so kind, in a way that I’ve gotten used to and not even mad at. I wept as the neonatologist told me she is so sorry but I absolutely believe her when she told me she would do everything she can to help us.
I asked her how many people will be in the room when I delivered. She said, thirty.
Thirty people in the operating room. I was shocked.
I had joked with my OB that morning that I hoped whoever was doing my c-section knew what they were doing since things were “a little complicated”. Now the look she gave me makes total sense.
Thirty people are going to help us deliver these precious babies who are not expected to survive.
What I won’t say out loud during all of this but think of all the time is: are we doing everything we can. Should we go to a different hospital, get a second opinion, choose a different birth plan, google more, ask different questions. Definitely not google more.
I know God has the answers to the things we do not know and His ultimate plan is greater than ours. But these doctors, wow these doctors. They are so good to us.
So are all of you! Please keep our precious babies in your prayers. It’s the hardest thing we may ever walk through and we are doing it fully aware of God’s great love for us, the strength He gives us and all of your prayers.
Thanks you guys. Lots of love.
-Emily & Tom
Amanda smithJune 24, 2018 at 10:20 pm
Omg I’m so sorry y’all are going through this because i have been some what in this situation i always prayed to have the blessing chance but tthe father of my baby girl was on drugs very bad he was physical and mental abusive to me but just the tthought of bringing a life into this world with the situation i was in wasn’t the best i really just wanted someone to love me and so i thought that carrying a life in me was the only way I’d ever feel loved well a got pregnant with a beautiful little girl well when i got pregnant i weight only 72 pounds and the doctors tole me that i would never carry her pasy 8 weeks and i should end my pregnancy but i told them i would never give up on my baby so when i got to 16 weeks the doctor was floored and said theres no way i would carry her cause for one at 16 weeks i onle weight 78 pounds and a nervous wreck but i still would not give up so at 22 weeks i went into full term labor and had to have a emergency c section well whem my little girl was born she only weighted 1 pound 1 ounce and was 14 inches long when i came to my doctor came in with my daughter in a incubator and told me she was dieing and they put her in my arms i had never felt so much love and sadness in my entire life my little girl lived for just about 30 minutes i was so heartbroken i just couldn’t understand why she had to go so soon it caused me so much heartbreak i tried to commit suicide 3 times i couldn’t understand why God let me live that was march 12th 2008 well i found out a just 3 years later why he kept me alive i got pregnant with my now 7 year old daughter Emily and i worried the whole 39 weeks that what if it happen again but my babygirl was born weighing just 3 pounds 14 ounces i couldn’t be more happier she is a very happy sassy 7 years old so with Our God anything is possible I’m praying everyday that God wraps his loving arms around your babies and also you and your husband
Angela TrentJune 25, 2018 at 5:35 am
I only wanted to say that I am praying for your family, And even though it’s hard God knows what he is doing any those beautiful babies are here for a reason even if we don’t understand why. God will give you what you need to get threw this, You have so many people praying for you, and it is a blessing for so many to see how strong your faith is , me included . I wish you the best of luck and all the blessings you can get
Tory NorwoodAugust 7, 2018 at 6:25 pm
I am in tears reading this. I have been in your shoes and it is the hardest talk you will ever have. I remember my faith and knowledge that God is in control are the only things that helped me through this talk and the days that followed it. God is carrying you through this raging storm and He is holding you together so that you don’t have to. I am praying for peace for your whole family as you go through this and comfort for the girls.