A Curse & a Blessing

Posted on Posted in Induction/L&D, Thanatophoric Dysplasia

By Caden’s Mother

January 14

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My journal entries leading up to the day of my termination for thanatophoric dysplasia.

Everyone gets theirs.

I went to the doctor today for what I thought would be one of many routine visits. He pulled a piece of paper out of my file. It had all sorts of funky looking numbers on it.

My world came screeching to a halt.

Apparently, and might I add not surprisingly, I’ve flunked my prenatal screening test. That heinous piece of paper claims the odds my baby has Down syndrome should be 1 in 1,100 or so. My odds came back as 1 in 250. That’s the same as the average rate for a 35-year-old woman. I’m not even 25.

The doctor said there is no need to worry, that there is a 5% false-positive rate with screening tests. He wants me  to schedule an in depth ultrasound with a specialist.

A specialist!

I don’t know why I assumed I’d be blessed with two healthy little babies. After all the crazy the things I’ve done in my life? It’s a miracle that I’ve ever been granted a pregnancy to begin with.

Back to the doctor …. He says he sees no problems and that he’s not worried, but for the sake of those numbers I need to get that ultrasound done. He actually said, “Don’t run out of the room screaming and freaking out.”

Well, I am freaking out.

I go to stores and see the cutest boy stuff, and instead of getting ready for our little boy,I’m hesitant to buy even the littlest of toys for him. I can feel him already in my arms, a soft and warm little bundle, all the embarrassing little outfits I’d make him wear, and proudly show him off.

I know what we would have to do, if God forbid, we’re faced with that choice. I just wish the 19th would get here already so we will know for sure.

 

January 21

Why him?

It could be worse. I am a vessel. I could not be a vessel. I could not know what it is like to be woken up by an overly loud toddler banging on the door. I could be going through things without the wonderful family I have.

I would rather be the vessel I think.

So, best case scenario is something I never, ever expected. I thought we were all created equal? The wonderful little miracle inside of me says otherwise. I’m trying to stay optimistic about the whole thing and remember that there are families out there just waiting for my little boy. I feel so selfish. I try to tell myself the reasons why he would be better off with someone else. I only tell myself that so I will feel better about what I will ultimately have to do.

I don’t want him to think he was not loved. that he was not wanted. Oh God, how he is wanted.

They say that this could happen again, yet everything I read on the ‘net says that there’s only a 1 in 1,200 chance this could happen at all. Well, it’s happened. I had a thought today, that I have taken one for the team. Because of me, thousands of other babies can be born healthy and full-term. It doesn’t exactly make this any easier for me, but it stops the crying for a while.

I feel horrible for thinking why? Why this baby? Why this family? I have a healthy little girl, a wonderful fiance, and an outstanding family and circle of friends. I am blessed beyond words, how dare I question this? How dare I feel bad that this has happened? I could be barren. I could be all alone. Things could be far worse than they are. I feel so spoiled. I feel that I don’t have the right to cry about what is going on. 

I feel so guilty ….

Guilty for this happening

Guilty for wanting to go with adoption

Guilty for taking the easy way out

My mind changes on what I want to do with every passing second. It is utterly devastating not knowing what the right decision is.

It’s so irritating, not wanting to disappoint anyone. I think I know what the right choice is for him, yet not wanting to bail on him, not wanting anyone to think of me as a horrible person. Most of all, him.

I just don’t want to be the one. I know in my heart that they are out there. They can do for him what I can never do. That brings me back to feeling selfish. I can do whatever I put my mind to, why wouldn’t I want to put my mind to that? Of all things—why not that?

I don’t want him to ever feel that I don’t love him. That he is a burden. I want him to know love and only love. I can’t even take care of a normal child perfectly.

I don’t understand why I am being tested. I thought things were going so well. It’s not like my daughter doesn’t test me daily, I need more? Will I have failed if I let another family take him? Or am I simply just the vessel to bring this little boy to his adoptive family?

I wish I knew the answers. I am so afraid of marking the wrong circle.

 

January 25

So much for that vessel.

Today I get to meet my son. I am 22 weeks along in my pregnancy and after an agonizing waiting period, we’ve found out that he has thanatophoric dysplasia and will either die in utero, or shortly after birth.

We have decided to end any suffering he may already be enduring, remove the chance of him suffering over in the next four to five months, and to end our own suffering.

We will be checking into the labor and delivery portion of the hospital at noon today, along with all of the other women who are full term and giving birth to healthy babies who will live Labor will be induced and I will wait the horrific 8 to 12 hours it will take for him to come into this world. If he survives that, we will be able to hold him and tell him how very much we love him, and thank God for every second He gives us with our son before He takes him back.

I still can’t believe this is real. I can feel him kicking and moving around in there, although faint, it seems as if it is more movement than it has been in the past three weeks. I sit here and watch my cursor blink, just waiting for something to come to mind that I want to type out, but it all seems so difficult. The words aren’t easily translated from raw emotion and my fingers feel like they are strapped to the keys with rubber bands.

I’m sad for my family and friends. On top of the grief they feel for the baby, they are grieving for me. It’s bad enough that they are terribly hurt by the fact that there will be no baby. I know they are worrying about the right things to say to me and how to help. It makes me cry thinking of how much pain this is putting them through.

I’d rather go through this on my own. to spare others the pain and awkwardness of not knowing what to say or do. To spare me the awkwardness of accepting that they are hurting and accepting their condolences. What do you say to someone who is hurting inside, yet they put you ahead of their pain? What do you say when they hug you and apologize for what has happened? All I can think to say is, Why are you apologizing to me? I’m the reason you’re sad to begin with.

I want my loved ones to be able to grieve without worrying about me. I love that they are there, that they love me. I wouldn’t be here without them, but I hate to see them hurt. Ever. Especially when it’s because of me.

I’m sure people will be upset that I feel that way. They’ll  think I’m blaming myself for this, but that isn’t really the case. I feel bad that I am the reason they hurt right now. Not that I did anything, but if I weren’t in their lives they wouldn’t be going through this. It’s one more thing that has caused pain to people I love as a result of something that happened in my life. They have enough happening in their own lives to mess with their emotions. I hate that because of me, they are hurting again.

 

January 26

Procrastination pays off.

Thank God we didn’t get the nursery done early. I don’t think I could bear walking past his room, knowing he will never see it.

We checked into the hospital at noon on Tuesday. After waiting almost three hours to get paperwork in the system they, gave me my first dose of cytotec. Slight cramping and a movie later they gave me another dose. Not knowing when the pain would increase, I asked for a pain-relief hook up. Two more movies and heavier cramping later, they gave me my final dose.

I felt slight pressure for about half an hour, was in and out of consciousness for about an hour and then suddenly felt intense pressure and out-of-control cramping.

This was the moment I’d been both waiting for and dreading, yet it didn’t quite happen as expected. The intense pain was not expected. The pushing was not expected. Here I was in full blown labor and delivery crying from physical and emotional pain. I knew he had to come out—right then—but I knew the chances of him being alive when he did were slim. I was torn between wanting to see him and wanting to reverse time about 12 hours and never go to that hospital. At least if i had not gone to the hospital, I’d still be able to feel him kick me every now and then. I wouldn’t be staring down the inevitable fate of my son. I could have put it off.

I don’t know how long it took to actually push him out, but I know it wasn’t long. I couldn’t imagine giving birth to a bigger baby.

He was beautiful. Absolutely breathtaking. I had expected a good looking boy but he blew me away. He looked just like his daddy.

How cliché, but he looked so at peace. Not in any pain whatsoever. When the nurse asked me if i wanted to hold him, I didn’t hesitate to take my son into my arms. He was so tiny, only nine inches long and weighed only one pound. He took his final two gasps of air in my arms. Even then, he did it with no pain on his face.

We took turns holding him and saying our goodbyes. After it was just him and us. The nurse took him away, dressed him, took a picture of him and did footprints and hand prints for mementos.

I knew he was gone, yet it didn’t stop me from wanting to be with him. I held him for a couple of hours, all wrapped up in his blanket, and laid him on my chest. I so wanted to take back God’s decision. I wanted to have my son alive and in my arms, no matter what his condition. I settled for what the Lord gave me and was grateful that at least I got to spend a little time looking at my boy and holding him. I know that he is better off and at least now he has a second chance.

I had thought that maybe I was OK with everything that was happening, that I had dealt with it. Maybe I was just happy to finally get to see him and hold him. I let the nurse take him away and I finally got to eat and to sleep. I felt complete …. enough.

I awoke four hours later to another nurse bringing me breakfast and checking my vitals. I felt empty. I knew I’d said my final goodbye and that there was no seeing my baby this day, or any other. I went back to sleep.

I woke here and there for the next seven hours, every time hating the fact that I wasn’t asleep. Hating the fact that I didn’t have my baby crying in the basket across the room. Hating the fact that I’d asked where he would be put when I gave him to the nurse for the last time.

At 11:00 AM we left the hospital, and our son. I knew he wasn’t going to be coming home with us, but I guess I  wasn’t prepared to leave him there.

We have a meeting with the funeral home Friday afternoon to make arrangements. What started out as a baby who wasn’t going to make it through the pregnancy has now turned into our child who has died. From a prenatal diagnosis to a termination to a casket, a plaque, a memory.

A memory that will live in our hearts until the day we die. A curse and a blessing all rolled up into one.

 

 

Image courtesy of Pixabay.