Monday, July 1, 2013

Our new home

I had a hard time sleeping last night.  Tossing and turning wondering what the outcome of Monday would bring.  I finally decided to write down my questions for our team to see if I could just get it out of my head and get a few hours of sleep
1. What all can you do to keep her alive?  In the beginning we want everything possible done to give her a fighting chance.
2. How long will it be until we can hold her?
3. If her lungs are able to ventilate, whats the next step?
4. What should we expect that day?  What are we realistically looking at?

530am Our first Dr comes in to check on me.  That really isn't fair that she comes at such a ridiculous time, I mean really, who can think clearly at 530 in the morning.  She told me we wouldn't be able to get all the drs together at once but we could meet with them one at a time. We would do several tests today and then decide whether I get to go home, get induced, or something in the middle.   My first test was at 8am and I had to have some sugar in me to wake her up.  Mike wheeled me to the cafeteria to get some super healthy, sugar coated doughnuts and a fruit smoothie.  By the time we got back to the room i was whisked away to the ultrasound room.  Same BPP test we do every other day. 30 min to get 8 points.  Pass the fluid check, Pass the diaphragm check, sweet just the easy ones left. She just has to roll over a few times and kick and move her arms.  10 minutes go by.. 15..20.. still no movements.  Heart is beating, she just wont wake up.  I turn to one side, then the other.  Push on my belly, shake it, talk to her telling her she needs to cooperate. Finally in the last few minutes she moves just enough to pass.   We may have passed the test but I am for sure not at ease with the results.

Once we get back to the room, our nurse lets me know  we have a meeting scheduled with the neo-natal cardiologist at primary's in 30 minutes.  My heart starts to beat a little faster.  Please God let this meeting go better than the first one.  Give me SOME hope.  Even if its just a little.  I don't know if I can take ALL bad news again.

When we arrive, we are taken straight to the conference room.  This is a new Dr, I haven't met her yet.  She went through the same spiel showing us pictures of the heart and how Capri's is a very severe case.  I wanted to know right away what are we going to expect.  I just spent last night talking about her funeral and what she was going to wear and how we were going to cope.  Give me some hope, please... please.
As she is born, the NICU team will be there and most likely ventilate her immediately.  The chances of her breathing on her own are very very small. Once she is ventilated they will "pass her through the window" to primary's.  Once there she will be given medicine to keep a vessel open that will help her heart get oxygen and she will most likely be on that medicine for a few weeks.
  Wait! A few weeks??  The last time I talked to a cardiologist we talked about a few hours.. I get a few weeks?!?! That has to be a mistake.  I ask what she thinks our chances are of Capri getting that far and having a few weeks.  She says very good!  What?!?!?  Positive news?  Somebody pinch me? I don't get good news anymore, this cant be real.  Okay, lets try for some more..
What happens after those few weeks?  Well that gets more tricky.  She cant stay on this medicine long term because it can have side effects that can be life threatening.  After a few weeks we will know how her lungs are doing.  We will try to ween her off things and see how she does on her own.  Most likely she wont do great.  That's when we look at surgery.  But surgery is good, right?  That gives us time?  Surgery completely shuts off the right ventricle, making it unusable.  Once we block it off she will never be able to use that part of her heart again.  The mortality rate goes up quite a bit when part of your heart completely stops working.

So long term; we get her through the first month.  She has surgery, she does okay.  Now what?  Pigs valve? Heart transplant?  What else can we do?  From here there is not a whole lot. We just wait, watch, hope and pray.  Mike asked if she would be able to live a normal life span.  The Dr. said she has seen a few cases as extreme as ours live into there teens.  Expecting anything more than that is not realistic at this point.

 I am at peace.  I am okay.  I get to have a couple weeks with my baby.  Maybe even a few months.  I get to hold her and kiss her and let her know how much her mommy loves her.  That is enough for me.  Every parent wants there child to have a long perfect life, filled with everything he or she could ever want.  Our little girl just might have to reach all of her life goals in the first 6 months of life.

We come back to the room to do another test.  A stress test.  We never pass this one. Her heart beat  is fluctuating but not much.  The OB comes in to talk about the plan for the next two weeks.  I'm ready to go home.  Ready to be with my babies.  Spend the rest of this pregnancy happy cuddling with A and B.   No such luck.  I'm told I need to stay in the hospital so it looks like my new home is this hospital bed.  My husband on a hard couch, hospital food for breakfast lunch and dinner.   I miss my children more than i could ever explain.  Having them come to visit for an hour or 2 a day is just not enough.  The tears falling from there little faces when they leave the hospital are tearing me apart.  I can feel my heart leaving with them.  I want my babies.