Monday, June 4, 2012

June 4th, 2012

We got to spend time with our darling girl today.  My parents and the kids all went to Tacoma for the ultrasound.  She's doing so good.  Getting bigger... her weight is estimated at 2 lbs, 10 ozs.  She is maintaining a steady growth which is great. Basically she is about 2 weeks behind in growth, which is on par with what we've been seeing.

Recently someone who has a child with T18 commented on this blog and left her blog information.  Their story is different than ours, but it was great to read about their experience early on.  I was prompted to ask my doctor a bit more about the hospital stay.

It sounds like we will probably be staying a bit longer than I would have assumed.  I want to come home right away, I have not been mentally prepared to spend time at the hospital.  If she is doing well then we will stay longer (it sounds/feels a bit backwards), probably between 5-7 days.  Unfortunately St. Joe's is not set up as well as St. Pete's, so Abby may remain a patient after I am discharged and there is a good chance we won't have a place to stay with her.  I'm hoping (assuming) that there will at least be a chair for us to take 24 hour shifts with her in the NICU.  But I don't know what that will mean for visitors (our kids, family, friends).  I guess they do have a room that might be available to me if she is going to be discharged within a couple days.  I'm thinking we need to butter up the NICU staff to try to get that room.  I really can't imagine being separated from our little girl who could quickly change course and go downhill.  And I would really appreciate visitors to help me stay connected to the rest of life.

On the other hand, if she is not showing signs of remaining strong (hope for a longer life... ie, weeks/months) then we will head home right away with instructions for comfort measures and support from hospice.

I'm still digesting all of this.  We go back for another ultrasound on the 25th, and we're planning to visit the labor ward and the NICU at that point.  Dr. McMahon is hoping to schedule some time for us to meet with the head nurse, hopefully that helps to comfort me.  I'm not a mess about this, it's just another strange change after delivering all three of my babies at the same hospital.

At St Pete's I would be able to stay with Abby at all times, and have visitors.  Although we are still committed to delivering at St. Joe's I am wishing we could just have the best of both worlds.  I'm thinking that at some point I am going to learn to just let go.  Maybe?  Probably not.  There is always hope.

Speaking back to the other little girl, she had VSD (a whole in the ventricular part of her heart), it healed before birth.  Little Abby has more than a hole.  Picture a wall between two rooms, it's common (with a T18 baby) to have a whole in the top of the wall, or in the bottom of the wall.  Abby is missing the whole wall.  I believe in God, I want to say that I believe in miracles (Abby is a miracle, all babies are)... but I don't believe she will come out with a heart that works well.  There have been no signs of change, and we don't really know how bad it actually is since we never met with a fetal cardiologist.

When I mentioned the story to our doctor, not asking for hope but just relaying a common occurrence for us of hearing about "this other kid with T18..." she was inline with our thinking.  This isn't going to go away.  Abby is beautiful, and perfect in her own way, she is a miracle and she'll just have to let us know how long she'll be here.

The upside of her heart condition, if it is what ends her life, is that the process is peaceful.  Somewhat like carbon monoxide poisoning.  She will just fall asleep and peacefully leave us.  Her death will bring so much pain, but I can't imagine a better way for her to leave us.

So as not to end thinking about her death... I can't believe it's only 7 weeks until we meet her!  I just had to count the weeks out on my calendar... I'm in complete shock.  I was definitely stuck on the 8 week mark.  I've never been afraid of birthdays, pretending I'm younger than I am... but right now that is how I feel.  A bit in denial, with a mix of excitement over the prospect of seeing her and holding her.

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