I don’t even know where to begin.
We came in this morning for the ultrasound checkup. The doctor wanted to check on his growth and the fluid…so they did. His head grew, his limbs grew, but his abdomen did not. It hasn’t grown at all in two weeks. And so the word I didn’t want to hear came out of his mouth: induction.
We were allowed to go back to the house and pack our things, then turn around and come back. So we did. As scared as we were, we felt hopeful.
Once we got to the SDU, the nurses went over everything. Plans for the evening were to get comfortable and prepare for the Cervidil, which would “ripen the cervix.” It would possibly send me into labor, but if not, we would start the Pitocin in the morning.
Just before starting the IV and then inserting the Cervidil, another doctor came in and told them to hold off. That some results had just come in and we needed to talk about them. I pretty much knew how things were going to go from there, but it didn’t make the conversation that followed any easier.
There’s a major problem with his chromosomes. I don’t know how to explain the issue, mainly because my brain has completely shut down at this point, but it’s not good for Benjamin. It may even disqualify him from the surgery to fix his hernia. And even if he IS able to get the surgery, there are other problems that will occur that are equally as serious and complicated. All I can explain about the abnormality is that part of chromosome 4 was missing, and there was an extra part to chromosome 7 that slipped in its place.
His new prognosis for life has yet to be determined, but it’s going to be devastating. And even if he lives, the quality of his life will be terrible, for lack of a better word.
The Cervidil has been canceled for the night so that we can use the evening to process this information as much as possible, although there is no way to prepare for what’s going to happen.
There will be no miracle. There is no more hope. This has been building since the moment he was conceived, we just didn’t know it. There is no way to fix it and there never was. There is no way to make it better for him.
All I could do was think about all of the major events of this pregnancy. Finding out we were expecting, seeing his tiny heart beating so fast and strong, making it to the second trimester, finding out that we were going to have a boy, starting to put his nursery together…and then finding out about the CDH. And everything went downhill from there. How could something so beautiful go so wrong in the blink of an eye?
I never thought that I’d find myself saying…I wish it was just a congenital diaphragmatic hernia. But here I am, wishing it was just that.
I would be lying if I said we were okay. We are not. We don’t know where to go from here, how to get ready for everything to become reality.
They are about to give me something that is supposed to help me sleep. I doubt it’s going to work but…it’s worth a shot. Tomorrow is going to be a bigger day that we thought.
Please go and hug your children…right now.
Goodnight.
laura said:
I don’t know what to do other than pray.
Sharon said:
Oh, Eva honey.. I sit here crying for you and Eddie and for baby Ben..Words aren’t enough to tell you how strong I think you have been and still are. You have instilled that in your son.. he has fought for you for almost 9 months and there is a reason for that.. and you will know it soon.. no matter what..know that we are here for you , no matter the time of day or night.
Brandi said:
I know nothing I can say will heal what is going on. I do want you to know that I love you guys and will continue to pray for strength and healing for everyone: you, ed, and especially baby Ben. Sending love, warmth, and hugs your way. YOu will be in my thoughts continuously. Love you.
lu said:
Eva, Doctors dont always get it right. My neighbor was told her son wouldnt survive the delivery. He lived to be 29 months old and met every milestone they said he would never achieve. I will continue to pray for you and your family. I know its easy for us to continue to have hope because we are watching from afar. I will keep you, Ed and Ben in my heart. Xoxo
Selby said:
There are no words or comments. I am thinking of you all day today.
brandybrow (@brandybrow) said:
I cry for you with deep understanding. My daughter was born two years ago with a missing part of X chromosome and in it’s place was an extra piece of chromosome 2. We have gone through enormous battles, like you are walking through now, and even though your son and my daughter have vastly different complex medical problems, the agonizing path navigating the trauma is the same.
I cannot tell you why Benjamin is stuck with this. What I can tell you is that there will be lonely, agonizing times when you feel isolated because no one can even begin to wrap their minds around even a piece of what you’re dealing with. It is not their fault nor yours. It just is.
In those devastating moments, remember me. I am you: I’ve walked those depths of despair with a child who almost didn’t make it out of the womb and had life-threatening malformations and an uncertain future. I’ve sat in lonely hospital rooms and through unspeakable painful procedures. In fact, my daughter goes back into O.R. in two days.
You can make it through this, and my hope and prayer for you is that maybe I can help so it isn’t as hard on you as it was for me. I had no one to talk to, no one who understood anything I was going through. You can have me, if you want me. Maybe even just knowing I’m here will help enough.
We’re all supporting you, many of us with prayers to the One who is able to do something where people can’t. Strength for today, dear one. Your family is precious in God’s sight and He does care and upholds you. That’s all I know with certainty.
Tabatha Ferrell said:
Eva, I am praying for you and your family and asking God to give you the strength to get through today, tomorrow, and the events that follow. God bless you and baby Ben.
Joanna said:
Oh, Eva. 😦 I am so, so sorry. I am praying for all three of you. I know this is not for what you hoped.
“We don’t know where to go from here, how to get ready for everything to become reality.”
I can’t tell you where to go from here, either, but here are some potential resources that might potentially help with your journey:
http://www.rarechromo.org/ (info on chromosome disorders)
http://www.nowilaymedowntosleep.org/ (photography provided for families)
http://perinatalhospice.org/
My prayers for you are that you, Eddie, & Ben have time to spend together after Ben’s birth, no matter how brief or how long. Memories are important, whether they are of brief moments, hours, days, or years. Photographs, video, tangible items (locks of hair, clothes, blankets)–all for memories.
Ginnie said:
Miracles happen
http://www.christopherhopper.com/2011/07/the-impossible-feat/
PittedDates said:
Eva- I have been following Benjamin’s story so closely and praying for all three of you so much. I find myself at a loss for words. I will continue to pray for you. I am so sorry you are going through this. I’m here if you need anything. I’m sorry.
Diana D. Veintimilla Aspiazu said:
Being a mom is the most beautiful thing, but is also very hard.
We give everything for our kids… we do everything for them.
I’m so sorry you are going tru this…
But despite your circumstances, enjoy every little moment you have
with Ben…
Remember: You are a brave and strong woman.
You will be in my prayers…
Kristi Coufal Kolmetz said:
Eva,
I’ve been following Ben’s story for a while. I am devastated to learn of the news. I truly hope you get a miracle and the doctors are wrong. Sending prayers and support your way.
Courtney said:
I have no words mama.. You, your husband and Little Ben will be in my prayers.
Anonykat said:
Oh Eva. 😦 My heart is just broken at this news. I believe in miracles – we know of a family who was told definitively their baby did not have a brain, only fluid, but chose to carry to term only to find out that he has almost all of his brain and is now a healthy one year old – but I know that sometimes the miracle we hope and pray for doesn’t happen. I don’t know what will happen to sweet, sweet Benjamin, but I know that for however long you have him, whether a few minutes or a lifetime, that the quality of life he experiences can’t be all bad, because of your fierce love for him.
I wish this could be fixed. I wish something could be different. If there was something, anything I could do for you, I would. Thinking about all of you and crying with you.
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