Wednesday, February 4, 2015

Day 4 - Willow Mei

A year ago, we waited. We waited and waited and waited for our first child to come home. The days and nights were so long.  (Read Willow's story from the beginning here.)

Now Willow is here, and we are living life to the fullest every single day, but we are still waiting. It feels like we still don't know what exactly being the parents of a child with a serious CHD is all about.

If there is one thing that I've learned in one year of being a heart mama, it is that there are no certainties in this particular medicine. It's just not going to be black and white like I want for it to be. Maybe God required patience out of me when wanting to become a mom in order to school me for the road ahead!

However, if there's one thing I've learned from becoming a mom to the most amazing little warrior of a girl, it is that I can rest. I can breathe easy, I can relax, and we can spend our days singing, dancing, and laughing at Daddy. I want to soak in every single sweet moment; I even want to soak in the not-so-sweet ones. I am freed to do so because I don't know what the future holds. I want to hold each precious moment and its immediacy with tenderness and joy. I want to be more like my sweet daughter and care most about people and relationships.

Willow has L-TGA (Transposition of Great Arteries). She also has other holes in her heart that miraculously kept her alive for the first nine months of her life without any surgical intervention. The longer we have her and understand the depths of her condition, the more incredible this is to us. It causes me to pause a minute and just praise God when I think about it.

We have options for surgical intervention, which is very nice to have. She will need surgery in order to survive. What is undecided, however, is which route we will take. Willow could have the Fontan procedure and operate on one ventricle for the remainder of her life, or she could have the Rastelli Arterial Switch and operate on two ventricles. There are reasons for and against both routes. However, it seems like this will be a 'roll with it' kind of surgery. The decision will rest in the hands of whoever we decide can operate on her heart. More than a few exceptional professionals have told us that they will have to decide what they can do once they can see the inside of her heart. The pictures and tests we've had done just aren't informative enough to give them clarity either way. Surgery will most likely be this summer, although that could also change.

Maybe life is full of waiting. It's very easy to constantly wait for whatever is next. I can live my life on hold, wondering when the next thing, whatever that is, will happen for us, or I can enjoy each interesting moment we are given. I can laugh when the food spills, be patient in the trying moments, and smile more often. I can take a few extra minutes to ask about someone's day or to hug and rock my baby girl.

This little two year old girl is just hilarious.  One time we were pretend sneezing and saying 'achoo', and Willow responded with, 'achmee'.  (She thought it sounded like 'you' and knew the opposite was 'me'!)  We were prepared to have developmental delays since she had such poor oxygenation for so long.  However, she is picking up English faster than I could have imagined.  Her reasoning skills are high; of course, we think she's brilliant!  She recently started making the 's' sound, which is new, and when she says 'good job!', it comes out, 'bood bob!'  One of my favorite sounds is to hear her say in that chipper little expressive voice, 'thank you!'  Songs make her stop in her tracks, and she will sing and dance to music she enjoys, especially Disney movie songs she's familiar with.  The way Willow can fight sleep is quite impressive as well!  Our daughter is a little bundle of fun with strong opinions and a smile that lights up any room!

My hope for writing this today is, of course, that a family desiring a child will open their hearts to a child with a heart defect. For my husband and I, our worlds have opened up in a way we never could have dreamed since the arrival of our daughter into our lives. God has been writing our story so much better than we could have. We have nothing to fear, and we spend our moments laughing and loving without restraint. We don't have to necessarily be a source of strength for our daughter, because God made her so strong in and of herself. We get the incredible honor and privilege of a front row seat.

"If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him." (James‬ ‭1‬:‭5‬ ESV)


LisaE. said...

I have always loved the name Willow. She is a beautiful little girl. It is amazing how loving one of these sweet, brave babies changes your whole life for the better.

Andrea O. said...

Thank you for sharing your story! Our youngest son (we have six children, five adopted from China, four with CHD), came home with DORV, TGA, and pulmonary stenosis. His surgery, too, was a wait-and-see procedure. The three options were the Nikaidoh and the Glenn. The surgeons were not sure whether his right ventricle was large enough to support the full bi-ventricular repair that the Nikaidoh would provide, but long story short, he received the full repair and is doing beautifully! Two of our other children were adopted with single ventricle CHD (one had her Glenn and her Fontan is tentatively scheduled for the end of this month and the other underwent cardiac transplant). You are so right...these children absolutely open our eyes, our hearts, our souls!

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