Sunday, March 27, 2011

Counting Blessings

 Reagan fared better at the hospital than Mama did.  She came home with a fixed heart and I came home with a cold.  Colds are miserable.  They leave you feeling groggy and useless.  Like doing nothing but curling up with a good book or snuggling with your babies.  Except that snuggling with a baby right after open heart surgery isn't exactly comfortable for the baby.  And snuggling with a baby with a compromised immune system right after surgery when you have a cold is downright foolish.  So I have been left with only the joys of Jane Austen and watching my children play.  And counting my blessings.  So many blessings.  Some big and obvious and others small, but no less potent.

Reagan came home from the hospital only 36 hours after Open Heart Surgery minimizing her risk of infection. BIG blessing!
Reagan is already obviously feeling so much better, no longer sweating and panting after eating or playing and not even on any Tylenol for post-op pain any more.

Reagan is able to again nurse (enthusiastically) providing her with much needed protection against Mama's cold.  Huge blessing.
Reagan showed us her smile again today along with some new skills to show of to her therapist when she gets to resume therapy next week!

Oh boy this is going to be a long list :)

This bassinet that we never used for the other girls, but which has been perfect for keeping Reagan safe from sisters enthusiasm while being adaptable to her increasing desire to play.  A small thing that makes a big difference.

Rafael's new job only 15 minutes from home!
A church that has rallied in providing support.
Family that was there through the surgery and has open arms for all my girls.

A freezer full of food so we don't have to go shopping anytime soon.
A sweet little clip to brighten the day.

This amazing thing called the internet so that I can interact with friends even though we're isolated for a bit.
Oatmeal chocolate chip cherry cookies.
A garden that makes my mouth water when I walk through it.

Did I mention that Reagan can nurse again?  Oh yeah, and she got her giggle back!

Wednesday, March 23, 2011

The Power of Prayer

 We are home.  I sat down to write an update several times today, but every time I got a couple sentences typed they came in and updated our status again.  When we left last night she had not yet eaten nor had I been allowed to hold her.
The first thing our nurse said when we walked in this morning is that they were thinking of discharging us today.  And from there it was just a matter of working toward that end.  At about 2:30 Dr. Bailey came in and said is his sweet, slow manner "I've been trying to think of what we could do for Reagan here that you couldn't do better at home".  Then he listened to her heart and said in response to my statement that she looks so good "well she doesn't have any holes in her heart any more"  Then he ordered her discharge :)  Out came all the lines and monitors.
She had the best team and the best nurses and the best care. But even more than that she had the love and prayers of all of you backing her up.
 I know you all have been praying for a successful surgery and a quick recovery and as Susanna said how about that for an answer to prayer!
Now if you don't mind....don't stop.  This mama is physically and emotionally drained and we have a bit of a road ahead of us in handling a fragile Reagan and keeping her rough enthusiastic sisters from bouncing giving her too much love.

Tuesday, March 22, 2011

Healthy :)

Dr. Bailey said the he wouldn't change anything about the surgery.  It went very well, and quicker than I expected.  He also closed the PFO that hadn't closed all the way yet so her heart is ready to take on life!  We got to see her go past then we grabbed some lunch while we waited to get to see her.  She looks so good!  Groggy and upset that mommy can't feed her, but her color is good and her numbers are all good!  Such a relief to be on this side of it.  It looks like we won't have a long stay here.  Her nurse Ruth is a sweetheart and is keeping us informed of everything thats going on.  Even her tubes and wires don't look very frightening.

Thank you all so much for all the prayers.  We are feeling very loved right now with all the calls and texts checking up on how she is doing.  I've got my phone and charger here so if you want to know more, bring on the questions :)


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.

Monday, March 21, 2011


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.

Thursday, March 17, 2011

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.

Tuesday, March 15, 2011

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! :)

Monday, March 7, 2011

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.

Thursday, March 3, 2011

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 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 :) )