Countdown to Bean Town

Three weeks from today we will be at Children’s Hospital of Boston in the midst of preparing to hopefully fix our girl.   As the day approaches, I’m sure the prednisone for my eye doesn’t help, I find myself becoming more and more anxious and emotional about the whole thing  – The feeding tube on 24 x 7, administering drugs several times a day, hooking her up to the oximeter often to make sure her oxygen level is OK – PT’s/OT’s/ home nurses and doctor visits all have just become part of our lives (I’ll admit Carrie deals with most of this) – Believe it or not, It’s easy to overlook all of that and forget that this smiley beautiful little girl is so sick.

 

I find myself every night laying in bed, staring at the knots in the pine ceiling,  trying to process what is going on.  There are so many pieces to our story these days -- it often feels a bit overwhelming – We’ve had a lot of family and friends that have had babies around the same time, and I’ll admit, I've started to notice some differences in the meeting of milestones from the other babies – I can’t tell you if these are because she has Down syndrome or because her unhealthy heart causes her to be tired more than most babies, or just because she has spent a third of her life in a hospital bed – Will this baby that spends hours every evening laying on my chest sleeping have twice the energy when her heart is fixed?  Will she always be so tiny?  She’ll be five months this Friday and just cracked 10 ½ lbs.  I used to wish that Lylli would lay on my chest and nap, but she didn’t want to have anything to do with it  – Gracie is definitely making up for it – every night she naps on my chest – we sit in the same black leather chair in the corner and bond – I pat her back as we sit chest to chest - I feel every single one of her heartbeats and think about how much I love this little girl and would do anything to fix her and about what our future holds.   There are so many questions that will be answered soon.  I haven’t really even processed the fact that she has Down syndrome – that really isn’t a factor to us.  I only care that she is happy and, hope someday, healthy and that she has the opportunities to live up to her full potential – the same things that I want for Lylli.  As I mentioned in an earlier blog, our friends recently lost their daughter – Obviously this is something that comes to mind quite often when I think about our trip.  It very much cements to me that there’s no  explaining why things happen the way they do – It’s at this point that I have to leave it up to a higher power and try to accept that there’s a plan for her.    

 

One thing that I’m really struggling with is sending her into surgery to save her life when she seems to be managing so well – I know that it has to be done and the best chance she has is to do this when she is strong and healthy, but it was easier to send her into the other surgeries when her heart was failing.  I know her heart right now is only working in a limited window of time and something needs to be done in order for her to have a healthy life, it just scares me so much.  I hear nothing but wonderful things about the doctors that will be working on her in Boston – Doctors that have fixed kids that were told by other highly respected doctors from around the world that they couldn’t be fixed.  Obviously you want to go to the best there is, but one thing I’m finding as we wait to have them check her out is when you go to the best, it’s very scary to think about what we can do if they say they can’t fix her – only time will tell.  That was the last time you’ll hear me even address anything besides the best of results from our trip – I’m trying to be realistic in this blog and put my thoughts out there, and will face whatever comes, but am fully expecting to bring her home from Boston with a four chamber healthy functioning heart.