What’s A Planner To Do?

I like to plan.  I enjoy planning vacations, fashion shows for work, parties, etc.  I especially loved starting a baby registry and planning the layout for the nursery.  Now that I am thrown into a situation where the plans keep changing, I’m super frustrated.  Going with the flow was never my thing.  Alex has helped me to be a little more spontaneous but one can only change so much.   I want my calendar back, one in which I don’t have to write in pencil.

View from my hospital window.
Weather is also unpredictable, imagine worrying about your husband trying to make it to your delivery in a snowstorm. This was the view from my hospital window this weekend.

Obviously, the first plans that changed were the two of us planning on having a “normal” pregnancy and a child by the end of the year. This pregnancy has been anything but normal, doctors really haven’t seen my exact situation before.  Instead of planning for a baby, we have had to make plans for her death.

The very long drive to visit me.
The super long, boring drive to visit me.

If the baby manages to survive with extreme respiratory support, the kidneys become the next issue.  We have no idea why the kidneys aren’t functioning.  There is urine in the baby’s bladder, which in itself is baffling, but the baby hasn’t excreted any urine.  If the baby manages to survive with respiratory help how far do we go trying to get the kidneys functioning knowing the severe life-long problems associated with infant dialysis?  That’s assuming the baby will be at a weight for dialysis to even be an option.  See where I am going with this?  There are way too many different scenarios that I have to prepare myself for, it’s driving me crazy.

The end result is enough to try and plan for, but the delivery date keeps changing as well.   I have mentally prepared twice for delivery and each time the doctors are thrilled to tell me that we can wait longer.

The day I took an emergency flight from Rapid City to Sioux Falls I definitely thought I would have a c-section that day, as did everyone else.  Instead, the baby’s heart rate was fine and I hadn’t lost enough blood to require a transfusion so four weeks of hospital bed rest was ordered.

This week I had my mother and husband travel many hours again (7 and 5 hours respectively) to Sioux Falls because my surgery was scheduled given that we didn’t think the baby was continuing to grow.  We were wrong.  The ultrasound the day of my scheduled surgery showed that our baby had put on 10 oz, a lot more than anyone expected.  Apparently the bed rest is working.  So my poor family drove all that way for nothing, two more weeks of bed rest.  I truly don’t mind the bed rest, I just wish I knew if it would make any difference in the outcome.

Doing puzzles during bed rest.
Puzzles can become an obsessive addiction if you let them

Part of me wants to deliver so we can heal and get on with our lives.  The other part agrees with the doctors’ advice that the longer we can keep her in my uterus the better chance of her survival.  But what kind of life will we and our baby have if she does survive?  I can’t spend my entire life in a hospital with an incredibly sick child.

In summary, I have no idea what the outcome will be.  I have no idea what day I will actually deliver.  I have no idea what caused these complications in the first place.  I can handle bed rest, what I can’t handle is the unknown.


P.S. I have the greatest friends and family in the world!  Everyone is sending their love and support for us during this tough time.  I also have received about two packages a day, I have been so spoiled by everyone in my life.  The sweatpants, robes, flowers, fruit, chocolate, etc sure does brighten each day here in the hospital.  Thank you!

Alex modeling one of my new pajama sets.
Alex modeling one of my many gifts – he sure keeps my spirits up.

(Originally published Nov. 22nd, 2015) 

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