Heartbeat!

We got a couple of updates in quick succession saying that the surgery was going well followed by the amazing news that she is off the heart-lung machine and her heart is BEATING!  We think that means that there was no damage that requires pacemaker assistance.  We won't know for sure until we talk to Dr. Bailey when they are done but we are praising the Lord for a quick straightforward surgery up to this point.

Letting Go

She's gone.  We turned our sweet girl over to the surgical team 20 minutes ago.  The only saving grace was that her team really, really cares about her.  They told us over and over that they promised to take very good care of her for us.

They will be texting me updates every couple of hours and I will pass them on here.

Awareness

Today is (was) World Down Syndrome Awareness Day.  I must admit that I wasn't aware of much more than one tiny beautiful little girl who I will hand over to surgeons tomorrow.  I am fighting every impulse to take her and run far away from the pain that will be inflicted upon her.  And I miss my other two girls.  For the very first time since they were born I did not tuck them in and kiss them goodnight.  With a 6 a.m. report time at the hospital it was better for them to be with their friends.  I know this is a late post and will likely not be read until morning, but I wanted to put up the last details I may not yet have shared.  Reagan's surgery is scheduled for 7:30 and will take 4-6 hours.  We will get updates every couple of hours and I will update here.  If anybody wants text updates just let me know and I'll update you that way too.  If there are no complications we may be able to come home as early as Thursday.  As of now we do not know where we will be tomorrow night after the surgery as Reagan will almost certainly still be on ICU and we were not able to get in to Ronald McDonald house, so whether we come home for the night will depend on if I can bear to be that far away for that long.  After she gets into a room I will stay with her until she is discharged.  If I have forgotten anything important....sorry, my brain is officially no longer working.

A Very Merry Half Birthday

Well, it was better after the mean people were done making a pin-cushion out of her arm at her pre-op appointment.  Miss Reagan is six months old today and she celebrated by going to the hospital to be poked and prodded and x-rayed.  But mommy made it up to her by making her a half cake as has been our tradition for each of the girls half-birthdays.

 I admit that after a marathon day at the hospital I improvised, but it was a very yummy creation, more fudge than cake and covered in whipped cream. :)

 Having been at the hospital today I have Reagan's latest stats...She weighs 8 pounds 13 ounces and stretches 23 inches long.  Her therapist Elizabeth is very happy with her progress in Gross Motor skills.

 She can now sit supported with great posture.  She'll roll onto her side now.

 And she loves to play with her dangling toys.  She is even starting to bring them to her mouth now.  She thinks all these achievements warrant a toast.

(Her sisters loved the cake and sparkling juice too!)

  P.S. Tomorrow my mom and I are being interviewed at 4:00 on KBRT 740 about Reece's Rainbow and Down syndrome.

Fearful Anticipation

The countdown is at less than a week now and it feels like the surgery is rushing up on us far to quickly while at the same time painfully far away.  I am dreading handing Reagan over, but at the same time the trauma of anticipation is starting to take its toll on me.  We are ready.  Clarisse and Cadence  know (as well as they can at their age) what is happening and are excited to spend time with their friends and Grammy and Papa.  The grocery shopping and the laundry are done (for the next five minutes *grin*).  Our bags are packed with comfy clothes for lounging around the hospital for days on end and I have a cozy new pair of Uggs (hospitals are cold) courtesy of my sister.  The only things still pending are Rafael's work (he doesn't know where or what his position will be...grrr) and the surgery itself.

I am so grateful for all the prayers that I know are holding us up right now.  It is wonderful to know so many of you care so much about our little girl.  For those who don't yet know (I neglected to mention it before)  Reagan's surgery will be at Loma Linda University Medical Center.  We are conservatively expecting to stay about 5 days.  I know many of you have asked about what we need or how you can help.  My friend Susanna wrote a post on her blog about that very subject after their experience with Verity's surgery.  And yes, we would love to have visitors! :)

Open Heart Surgery

We had our appointment with the surgeon today.  His name is Dr. Bailey and if anybody remembers "Baby Fae" and the baboon heart transplant in 1984...he's that Dr. Bailey.  He was a pioneer in infant heart transplant and also successfully transplanted the first infant-to-infant heart in 1985.  Despite the fact that he is world renowned, he has an absolutely fabulous manner.  He explained things slowly and in a way that we could understand them and gave us a tremendous amount of confidence.

 His bio states that his philosophy of care "Embrace the child and his/her family with honesty, reassurance, and sensitivity toward their physical, emotional and spiritual health." and I have to say that we really felt that. He even held Reagan for a picture and snuggled her a bit :) (who wouldn't right?)

 Her surgery to repair her broken heart is scheduled for the 22nd of March. Two weeks from tomorrow I will give my baby girl over into their capable hands and try not to break down in the process. It is surreal. But it is set and every hour takes us closer to a fixed heart. Scary. Exciting. Unbelievable. I don't think I can even name all the emotions that roll over me in turn right now. The next two weeks will be the longest, shortest two weeks of my life.

The Course is Charted

We saw the cardiologist again on Tuesday.  No big surprise Reagan not only didn't gain any weight, but she actually lost a little.  So surgery is for sure now.  It is a relief to know which direction we are moving.  We have an appointment to see the surgeon early Monday morning and we will set a surgery date then.  I'm praying that it is not too far out.  Now that we are going to do the surgery I just want it done and my baby feeling better as soon as possible.  In the words of Reagan's (fabulous) pediatrician "well, we tried...now lets get her fixed up".

 In the meantime since I'm not pushing so hard for weight gain I have cut back on the pumping and increased the nursing and we are trying to spend some pleasant family time before the hectic surgery life arrives.

 Doing things like planting our garden.  

And having picnics in the clubhouse.  

You know, all those little things that make you smile and remember that life is good and God is good...all the time. (that one's for you Pastor Don :) )