Life As I Know It

The lead up:

It’s been 5 days since we’ve met the 2nd sonographer who gave us the rather un-informative news about Toby.

What he told us was that the baby is extremely small, but that the organs have been developing normally- heart beat was strong, brain was looking good, and he couldn’t see any physical abnormalities sans the smallness. He looked at the placenta and said it is about 1/2 of what it should be, and the blood flow within it is poor. My blood flow to it is good, I am giving it everything I should be.

We asked to find out the sex of the baby even though we previously said we weren’t going to because if things were bad then baby needed a name. The baby is just as much a person as any of us and a name really makes the baby real. Not that he wasn’t real before, but when there is a name, it changes the situation. I don’t know if you understand what I mean, but hopefully you understand.

We learned then that he was a boy. I was totally wrong about the baby being a girl. Then he said “He probably will not make it, you’ll probably choose termination.” That was a shock. We asked some more questions and he relented and explained that  the baby is coping for the time being but the placenta wouldn’t hold out but didn’t say how long. All he would say is that we could cross our fingers and wait 4-5 weeks to come back and check.

Two things: One, Termination isn’t something we wouldn’t consider unless Toby was in very bad shape and suffering. That isn’t something the guy could say was going on. He said the opposite, that he was coping and doing fine for the moment. Two, sitting and waiting around isn’t something we agree with either. This is our baby and we will do anything and everything to give him EVERY chance possible, so sitting and doing nothing is not on the agenda.

We discussed it with our regular OB who explained that there aren’t a ton of specialists who can deal with pregnancies like this nor facilities. Those that do exist are very complicated to navigate being on the state system (in Austria). She recommended that we would probably feel more comfortable coming home to where there are multiple specialists and hospitals dedicated to the care of high risk pregnancies and babies- which was something we privately were talking about anyway.

The Present:

So here I am at home- Josh and the kids get here on Wednesday since we couldn’t get the house/dogs situated to be able to all fly together.  I have an appointment with the head perinatologist at St. Luke’s/Presbyterian in Denver. I can’t say how much I wish it were Tuesday all ready.

Waiting the few days is agony. Waiting to see him and hear him is almost more than I can take. Every time I sit and don’t feel him move for a while, I panic. When he does move, it’s a relief, but part of me worries that I might be wrong about it being him.

Emotionally I am wrecked. I’m in a state of trying to maintain, to be positive and not worry. But that is hard, I am a worrier by nature. It is what I do best. When I am not busy or trying to keep my mind occupied the dark “what-if” thoughts come creeping in. What if he doesn’t make it? What if I go on Tuesday and he is gone already? What if he’s there but they don’t think he can hold on 3 more weeks?

I swing from being distraught, sad, and worried, to being able to laugh at a joke. It doesn’t feel right. But I think it’s perhaps part of a coping mechanism. I don’t know.

As a heads up, I can’t deal with emotional people. I’m not in a place where I can comfort others, (besides my husband) right now. So as harsh as it might sound, if you need to be sad and mopey I need you to do it somewhere else not around me. I need strength, not pity and more sadness.

We’ve done the research on what needs to be done if Toby leaves us, and that’s the last I will think about it. I’m not talking about it again unless it happens.

Instead I am focusing on the positive and what could be. Maybe he’s small, maybe he spends some time in a NICU, maybe there is more we can do to help him. I’ve already flown over 5,000 miles to try and give him any chance possible, and I will continue to do anything that needs to be done for him. I am not giving up.

Maybe one day Toby will be bigger than all of us, and we can call him Tiny Toby as a joke.

 

{ 5 comments… add one }

  • Marie Smith January 18, 2014, 9:39 pm

    Elizabeth,
    I have been following your situation since your mom posted it on facebook. I want you to know that I am praying for you and Toby, as well as the rest of your family. I do not know if you are a Christian or not, but God is in control. Even when we don’t understand, He is in control. My prayer for you is that no matter what the doctors say about terminating your pregnancy, that you will not do it. When my daughter Veronica was pregnant with Emma, they told her that the baby was not developing properly. They said that Emma’s limbs were not growing in proportion to the rest of her body. The doctors said that she would be handicapped at best and die when she was born at worst. They did ultra-sounds every two weeks up until Emma was born. They repeatedly told Veronica to abort the baby. As a Christian family that could never be an option.
    When Emma was delivered the doctors were shocked to find a perfectly formed, perfectly healthy baby.
    What the doctors did not know was how many people were going before God praying for Emma. All this to say, that even when the doctors have all the physical information, God has all the Power. He can change things. And even when He choses not to change the situation, He can use those circumstances to draw us closer to Him. You are in my heart and prayers.
    Marie

    Reply
  • elizabeth January 19, 2014, 3:28 am

    Thanks Marie! We are Jewish, but we absolutely believe God is in control. We absolutely appreciate all the prayers, they really do help!

    Reply
  • lpyankeefan January 19, 2014, 2:17 am

    Hi there. Found your post through a mutual friend. I don’t have any answers for you but I can tell you what happened to me…

    …you see I was one of those babies that was given little or no chance from the doctor’s. My mother went into premature labor sometime after twenty-four weeks. No, I’m sorry…I can’t nail it down any more than to say that when I was born less than twenty-four hours later I was three months early.

    When born I was immediately placed in neonatal intensive care. I weighed two pounds, two ounces at birth and was given a grim prognosis. Words like severely mentally retarded, deaf, blind and dumb (mute) were words that were repeatedly given to my family. “He’ll always have physical, and mental problems” was also told. I stayed in the incubator losing weight and eventually bottoming out at one pound, ten ounces. I had lost almost 25% of my body weight at the time.

    Almost three months later, around my actual due date, I was released from the hospital. I can’t say that everything went perfectly but I am alive now…more than forty-four years later. All of the prognosis given to my family in August of 1969 turned out to be false. No lingering physical or mental problems to speak of.

    You’re in my thoughts and prayers. I hope that your situation ends as well as mine did.

    Reply
  • elizabeth January 19, 2014, 3:26 am

    Thank you so much for sharing your story. It’s stories like this that help me feel better and give me hope!

    Reply
  • DaisyChain January 19, 2014, 4:01 am

    Dear Lord,

    Please protect and keep Toby and his mom in your hands. You are the Great Physician and nothing is impossible. Traveling safety for the rest of the family while they are apart. Keep them all strong and safe. Thank you, Lord.

    Reply

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