Whatever the Heck This is Days 14-15

As of my last report, on Monday night, we were planning on a different test to determine both leaking and anatomy.  I was feeling really at peace with our decision...for about five minutes.

Monday night was a long hard night for me.  I had this sudden realization that I was moving from knowing and accepting that something could be true to knowing that with in that day I would be asked to know and accept that it was true.  I also had the sinking feeling in my gut (and there is no other way to describe it) that the outcome of the test would be door number 2 (no kidneys and/or bladder).


I made it through the night and a friend was able to come over early so that Tim could come to the hospital sooner which helped.  I also had a great day nurse who understood the balance between space and support.

Starting with morning rounds, the day just took off on its own with no semblance of predictability.  Right off, we found out that there is a nation-wide shortage of the dye used in the other test that we had been planning on doing.  There was no known/generally-accepted safe alternative and they did not know when they might have an answer on that.   We had the option to cancel the MRI and wait for an alternative to become available but they didn't know if/when that would be and we would be back on a several weeks wait on a scheduled MRI slot.

We agreed to the MRI.

This meant no eating as they didn't have a time slot for me, just a "sometime today".  The called us back around 11:00 and this is where all dignity was stripped from my life.

They wheeled me to an empty hallway and parked me next to a call button and said someone would come get me.  Then they wheeled me through a very nice waiting room, had me strip down to nothing and put on a hospital gown and then wheeled me back to the very nice waiting room to sit with all sorts of properly dressed people.   I think between Siena and I we cut the average age in half....

More waiting and they finally brought me back.  Now, as if this whole test which I didn't want to do but felt bullied into with no other choice to get an answer wasn't bad enough they asked me to lay down flat on a hard table and lay completely still in a solid tube that was so loud they gave me earplugs AND they put this weighted thing over my very pregnant belly.

Now as most of my readers have been pregnant before I want you to think about laying on your back for 30 minutes on a platform they keep moving back and forth without allowing you to move WITH a heavy plastic thing over your belly listening to really loud noises for a half an hour.   All of this without any sense of physical modesty/decency, absent of the ability to see without your glasses, hear anything over the awful noise, and without the comfort of your wedding ring and favorite necklace (that you haven't taken off in almost 7 weeks).  Each time the machine makes its awful noise, your baby moves so much it hurts but you can't adjust or flinch or anything.

I remember praying, "God I have literally been stripped down to nothing.  I have absolutely nothing left to give up, so do what you may because I have had enough."  I don't even know if I was even asking for Siena's health anymore...just an end, ANY END, to this nightmare for all of us.

Probably not the greatest prayer ever.

Then they finally take you out of the tube, ask you to stay on your back without shifting while the radiologist looks at the images.  Then they say, "Just a few more pictures."

My hips and back were so sore, I was honestly not completely sure I would be able to sit up by the time they were finally finished.    I did and somehow made it back to Tim without too many (more) tears and stood long enough to put my clothes back on.  Then they took me back to the empty hallway with the call button.

We were told that we would have the results *right away*.

The clock kept ticking.  I was hungry, dehydrated, physically and mentally exhausted, and my whole body hurt.  I tried to nap, we watched random shows on the Food Network, we sat in silence and stared at each other.

At 3:00 our good nurse went home.  The new nurse was just a little too chipper and uninformed of everything going on.

I knew it wasn't going to be good.  I remember telling Tim, "I think they still don't know."

At 5:45, they finally came to tell us just that.

The images were unclear and inconclusive.  At least 3 people said we've never seen anything like this before and it might be written up and set the standard for future cases.   (Which knowing them just means that sometime in the future someone may write this up and other people will use the information to justify recommending abortion to some other unsuspecting set of parents- a thought which makes me physically ill).   They say something is where the kidneys are supposed to be but they don't know what it is.  They still can't find a bladder but there is something "more complicated" than they expected and they aren't able to say for sure.

In their arrogance they thought I would stay in the hospital until they knew for sure.

I said enough is enough.

We packed our bags and at 7:30 we finally left the hospital.   We drove to a friends house and we picked up our babies.   Aidan knew when he saw me that it wasn't good and to see that boy's tears gave me enough strength to stop my own...at least for the time.   His pain is my pain.  I may not be able to do anything more for Siena, but there is plenty I can do for everyone else.

I left behind this cold and sterile bed.

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For this one.

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Lucie curled up with me and fell asleep with her head on my belly.  She slept with me most of the night, waking up at one point and just looking at me and saying "Here".   She kept searching for my face and wouldn't sleep unless she was touching me.

Yes little one, mama is here and I'm not going away again.

I mostly feel resigned.

The roller coaster of emotions from you are going to deliver in 24-48 hours and there is nothing we can do.  A week later hearing they suspected no kidney/bladder and recommended abortion.  The elation of making it to 23 weeks and having the doctors start to change their tune just a little bit.   The let down of not getting the answer (did we get an answer?).   Knowing that somehow now I just have to stay pregnant and see what happens.  Maybe she will be stillborn.  Not on bedrest there is a pretty significant risk of cord accident.  Maybe she will be born and maybe she will be able to breathe or maybe she won't.  But even if she can (which isn't particularly likely), barring a miracle, they can't do anything about the combined kidney/bladder problem and she will eventually die of renal failure.  Maybe in minutes.  Maybe in hours.

They finally called around 10:00 this morning to tell me the same thing they had said last night, only the radiologist has now talked to other radiologists and decided that she is right and there is kidney-like tissue and no bladder.  Oh yeah, and the MRI says the previa is not resolved (although my Dr. said we go with the ultrasound on that as its more accurate) and that there are blood clots around baby so "don't worry if you start bleeding again as long as its dark."

Great, thanks.  Exactly what I wanted to hear.

I just want off the ride and I know it's not even close to over.

I have 4 close friends in our homeschool co op that are either pregnant or just delivered.  Four babies that I am going to (have to) watch grow up.  If (when) Siena dies it will mean half, HALF, of my babies never made it home with me.  I don't have a single close friend I see on a regular basis who has had more than 1 or 2 early miscarriages, and despite having large families many have had none.   But me, again and again and again.  Something different every time- every medical reason that has been found for repeat happenings doesn't apply to me.    How can I be gracious about this?  How can I even pretend?

Do I even want to anymore?

I want to celebrate Siena, but how?  The only picture in my brain is of the day we bury our daughters.   Together.

And I find a little bit of comfort in that.

But not much.

I want to tell you how I still have hope for a miracle, and I do.

But in the meantime I need to face my reality not my dream.

But my nightmare.

Homecoming

5 comments :

talesfromthesideofthetub.com said...

Heidi, I know we only know each other via the internet and not in person but I consider you a friend regardless. My heart aches for you and I know that what you are going through is excruciating. As a mother of a large family where more than half my babies have not come home with me I do know that pain, and I know how much it hurts not to have anyone right there with you who also knows that pain. I don't know that I can bring you any comfort as nothing anyone said to me at the time really brought me comfort either. But knowing that people were praying for me helped and eventually something that someone told me did bring me a little peace. What I was told was that God gives these babies to the ones He loves the very most because He knows others will destroy them and not give them the chance to be loved, to be known, to live. He knows that even though it will cause you pain you will love those babies and give them the chance to know real love here before going to heaven to be with Him.

This journey is so hard, I know. It hurts to lose baby after baby. It hurts to know that more than half your children are not with you. It hurts to know that others don't understand. It hurts to feel abandoned by God and everyone else. But know that you are not alone. Sienna is doing great things in others' lives and will continue to do great things. She has a purpose just as we all do. God knows that the only way she can fulfill her purpose is through you. You will give her life and will allow her to do the work here that she is meant to do.

You are a model of Christ's sacrificial love. Thank you for giving Sienna life, for sharing your love with her and for her, and for showing everyone what true love looks like. We are all better people because of it. <3

Andrea said...

I am so very, very sorry, Heidi...

Meghan said...

This was not the update I wanted or expected. I'm so sorry!!!!
I will continue to pray for a miracle. I will ask your sweet Kenna to pray for her sister and for you!
(((Heidi))).
Also, I love the picture of Lucie. I can't imagine being away the way you were, and I bet it felt soooo good to have her next to you.

Theresa Martin said...

Heidi, I've been praying for you all day... my heart and at many (moments my eyes too) is weeping for you. I'm so glad you left. I know they're so shocked over their when anyone dares to doubt their ... um ignorance? Oh medical knowledge that's right ... but you did the right thing. God is in control not abortion suggesting doctors...
Blessed Louis & Zelie Martin were St Therese the little flower's parents. They lost at least 4 babies at birth (maybe more?). One baby died a few months after birth ... three of them were boys, Therese's father always wanted a boy (they had 5 living daughters), & he had to watch all three of his sons die as infants. "Story of a family" recounts these losses by way of Zelie's letters ... anyway, I've been asking them to pray for you and watch over your heart as you struggle through this ...
love you dear friend!

Kristin said...

Heidi,

I am a friend of Meredith's, but you and I actually met briefly at a park several years ago when I was visiting her. I found your story via her blog and I've been following it for the past several days.

The Lord must have really put you on my heart and mind because last night I actually had a dream about you. (I hope that doesn't sound too creepy!) I don't remember much about it, but I do remember you leaving the hospital and going back home. Then today, I opened up your blog and read that happened for real.

My heart breaks for you and I just wanted you to know that I will continue to pray you and your family through this difficult journey.