When You’re Scared to Stay, but Scared to Go.

We went from this…
To this…

And now… we’re TUBE FREE.

We’re leaving the CICU today…on post-op day 4.  This is almost unheard of for a kid as complex as our Dolly.  I’ll be honest, when the Attending doctor mentioned us leaving during rounds yesterday, my heart flipped a little from fear.  I’ve come to know and love these nurses.  They saved my little bird when her heart wasn’t squeezing after surgery and we had a BIG TIME scare.  It was their attentiveness that caused the doctors to flock to the bedside and make the changes that saved Dolly.  These nurses, they know what’s up y’all.  What am I going to do without them?

There is another part of me that absolutely wants to get the heck out of here.  I see my baby backsliding every single day she’s here.  She has lost almost all the weight she gained since she’s been home.  She grinds her teeth from the stress and she shouts at every single medical person who enters the room “YOU ALL DONE!!!  YOU ALL DONE!!!”  She asks for FPD constantly and I think that’s because she thinks that, just like for her heart cath, if he comes, we’ll go home.  She associates FPD with home, which is where she wants to be.  We’re getting there baby girl, we’re getting there.

As much as I will miss the parents I have gotten to know, because there is just something about the CICU and the way it unites us Heart Moms and Heart Dads, it is also scary to be here.  There is a pre-teenage girl next door who has a mom who LOVES to walk by and chat with our Dolly.   Dolly now knows that this lady isn’t one of those freaky “medical people” so she sits there happily, in her “ishy” hat and waves and blows kisses to her.

Yesterday, this woman’s daughter coded.  I heard the chimes go, and like I do every single time, I held my breath waiting to hear whose bed it would be.  Would it be they tiny baby with HLHS who just came up post-op her Norwood?  Would it be the 11 month old who just got her new heart?  When it was announced, and I saw our “team” rushing down the hall to this girl’s room, and this mama come out, pale and looking so scared, into the hallway to stand and watch, I got up and did the only thing I could, I just stood next to her.

Neither of us said a word, because what is there to say?  You say nothing, because there is nothing that will ever make it better.

This morning, this little girl is being “paced” to get her heart to fire in a normal rhythm.  While we leave, she will stay.  For a very long time.

The word “miracle” has been thrown around a lot this week in reference to Dolly.  While I, who consider myself a “religious” person have said it, it has also come from those who are true scientists, who don’t necessarily believe God had anything to do with Dolly’s recovery.  While I believe it is due largely to how many people have prayed over and thought about our girl, people are free to attribute it to whatever they would like.   Her recovery has gone better than anyone could have ever imagined.  Everyone agrees on that.

While I consider my daughter a miracle, it’s a HUGE slight for me to imply that had her recovery not gone this way, that she wouldn’t have been just as wonderful of a blessing and JUST as much of a miracle.  If the worst had come to pass, and we had lost her, my baby would still be a miracle just for having existed in the first place.  Each and every baby, even those we have lost, is a miracle.  The little girl next door is just as much of a miracle as Dolly.  The little girl whose new heart is beating, but stressed and fighting to do it, is also a miracle.  The little girl who just received her Norwood, but who still has a long way to go to live with half of a heart, I’ll say it again, miracle.

She knew that she was formed by God’s hands, dreamed up in his heart, and placed in this world
for a PURPOSE.  

who knows that each and every child is placed here for a reason.  
Today’s waiting child can be found on Rainbow Kids.  

Jed is on ASIA’s agency specific Waiting Child List and is listed is having a heart defect.  Jed is outgoing and active and likes to listen to music, just like our Dolly.  He has a HUGE grin.  At one year old, Jed babbles and knows what ‘no’ means.  He gets very excited to see his nanny and waves his hands and feet wildly when he’s happy.  Someone needs to take a chance on this little guy!!!

2 thoughts on “When You’re Scared to Stay, but Scared to Go.

  1. Dear Becky, I thank you so much for recognizing that those who have passed are still miracles. We certainly feel that way about our Daniel!Praying that the rest of the weekend brings some comfort for Dolly and some rest for all of you. When the going gets tough, try to find joy (I’m sure you do) in the fact that you are all together as a family:) I chuckled when (in another post) you said you were a wuss. I’m in the club, too…God bless,Lisa

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