Monthly Archives: August 2013

The Week Before Surgery

It’s finally here – the week before David’s heart surgery. I  remember walking out the glass sliding doors of LeBonheur on the day we were discharged from the NICU and thinking that heart surgery was months away. I was scared to take a heart baby home, but knew we wouldn’t be released unless David was stable. Babies with AV Canal heart defect eventually develop heart failure. Many babies with this particular defect are born in heart failure or require oxygen until the surgery can be performed. The ideal time for surgery is three months and / or 10 pounds. WE MADE IT! David is three and half months old, and weighs 11 pounds. I am so thankful that David has remained stable – it is a blessing from a merciful God.

One of the most difficult issues I have faced concerning David’s heart surgery are conversations I have had with Lily. She understands enough to know that David’s heart is inside his body. She wants to know if they will cut him with a sharp knife. Will he bleed? Will he hurt? Will there be stitches? Will he cry? It’s a conversation I never expected to have with my four year old daughter. These conversations have been hard, but they have provided an opportunity where I can talk to Lily about trusting in the Lord – a lesson I am still learning.

The week before surgery looks like every other week. You put one foot in front of the other and you LIVE. You live daily in the grace that God promised and has provided.

This week we have… snuggled! Lily is crazy about David. She walks into my bedroom every morning and says,”Big Sissy is here, Sunshine. It’s time for your mornin’ hug.” She squeezes him, and then makes a joke about his morning breath – it’s one of my favorite parts of the day. It makes me laugh every time.

 

 

 

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 We met Andrea (my sister), her three girls (Charlie, Nora, Abi Grace) and Morgan, and we went swimming. Well, Lily and I swam.

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And David did what he loves most…

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Lily got a fish. She named him Pluto.

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David has made progress this week. He is grasping a rattle and bringing to his mouth.

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When David had his physical, occupational, and speech therapy he was showing no delays. I know it’s early in his development, but he hit the rattle milestone right on time. I am thankful! David also transitioned to a regular bottle. When we supplement with the fortified breast milk he has been eating from the same type of nipple we were using at LeBonheur. We have to order them. They are disposable, and can only be used twice. We have tried to make a change before now, but he hasn’t tolerated it very well. We tried again this week, and he didn’t seem to mind. I am happy to be able to tell you that David has slept through the night four nights in a row. VERY THANKFUL! He may decide he wants to eat again in the middle of night, and if he does I will be happy for the opportunity to get up with him and be his mama.

We leave for LeBonheur in the morning. Surgery is at 6:30 on Tuesday morning. The entire process should take four hours. We will be updated hourly by someone on the surgical team. We will send updates through text, and will update the blog as soon as we can. We love you all and know you are praying for our family.

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I want to express my deepest appreciation for Louis’ Northeast Community College family. Louis was planning on returning to work the Thursday after surgery. After the staff donated enough days for the entire month of May we couldn’t expect or ask for anything more. Louis has 19 days remaining, and his boss insisted that he take the entire week. Thank you Northeast and Joey!

Honesty and Acceptance

I have been thinking about this post for weeks. Rolling around thoughts and emotions – wanting to get it just right (not that it’s anything profound). Honesty isn’t always easy because it admits vulnerability and weakness, but honesty makes us real.  So, here it goes…

David was three months old on Sunday. It’s been three months since an 18 hour labor, the diagnosis of a heart defect and Down syndrome, and our first night of many at LeBonheur. Three months where I have felt like I am living in a fog. Call it shock, call it post-pardum, call it the reality of my new life. Call it what you want, but it has only been in the last week that I have felt more like myself. I can laugh and enjoy the small things of life again. I am not saying that there haven’t been joyful moments in the last three months, but overall my days have been shadowed with sadness.

On the day David was diagnosed with Down syndrome I was sitting in a reclining chair at LeBonheur. He was only 2 days old, and despite all the wires and tubes I was trying my best to cuddle him. I was unaware that Dr. Pivnick, the geneticists, had been called in for a consultation. So there I was cuddling our little Sunshine when an attractive woman from Hungary walks through our door and says, “Let me eyeball this baby. Yes, I agree with the other doctors. This baby has Down syndrome.” Louis, my mother, and best friend, Morgan, were standing around my chair when we received the diagnosis. It will be a moment in my life that I will always remember, not so much because of the diagnosis, but because of the way the Lord carried me through it. I looked around at the three faces – Louis, Mom, Morgan – and I wanted them to accept this sweet baby boy I had brought into the world. It was silly really, to think they wouldn’t – these three individuals (along with many others) who have stood by my side through some of my toughest times. We shed tears. We looked hopefully into the future. We laughed at ourselves, and talked about all the good David would bring into our lives.

I experienced a range of emotions that day and the days that followed – some thoughts and emotions I am too embarrassed to share. Thoughts that would prove to be untrue.  I particularly struggled with what others would think. I kept telling Louis, “I don’t want pity. I don’t want people to feel sorry for me.I don’t want people to make fun of him.” In the weeks that followed David’s diagnosis I was paranoid with each visitor. What are they thinking? Are they thinking…yes, I can see the almond eyes, the smaller ears, the short neck? We live in a world where beauty and normality are perceived through looks and ability, and I wanted people to accept our baby. Accept our baby who will not be what the world will call “beautiful or normal.” I wanted people to accept him the way Lily did – with the innocence of a child where stereotypes and prejudice do not exists. I guess it’s the mama in the me that wants to protect him. Protect him from stares and hurtful words. David is 3 months old and the majority of those feelings have dissipated. I’m just a proud mama. One that wants to show off her new baby. There is a joy and excitement over how he will change our lives. We sit and wonder what our lives will look like in a few months. A few years. We don’t know yet, but I know it will be a better life because of David. David has been treated with love and acceptance with each new person who has met him. Last week we were able to attend church as a family for the first time since David’s birth. We were treated no differently than if David had been born “normal.” I am ashamed of myself for thinking it might be otherwise.

Honestly and with some shame…I can tell you that my last week has been better because acceptance has been difficult for me but I am arriving. I didn’t want a “different” baby, a baby with medical issues and needed therapies, a life where I feel like I have spent more time in a hospital or a doctor’s office than at home. I had three conversations last weekend that greatly influenced me and made me realize that maybe I hadn’t fully embraced and accepted this new life. The first conversation occurred over sushi when Morgan and I were enjoying a girls night out. She has been reading a book about living for the larger kingdom of Christ. She said the author says over and over, “Don’t shrink your life to the size of your life.” Had my life shrunk? What was I living for? Was I living for the larger kingdom? Later that same night Louis and I were talking (well, I was actually blubbering through tears), and he said something that really stuck with me. “Abigail, God brings events into our lives to bring us closer to Him. You and I have not yet arrived where Christ wants us to be. You can choose to believe this or choose not to believe.” The next day Uncle Lewis and Aunt Wanda (Louis’ mom’s sister and husband) came to visit. Uncle Lewis was holding the baby, while Lily and I were busy in the kitchen making a pound cake. The mixer was on full speed when I heard Uncle Lewis ask, “Do you think the experience has changed you?”  I wanted to be able to say an absolute YES, but I wasn’t sure. These two conversations and a probing question left me soul searching.  My life had been shrinking – shrinking with contentment, lukewarmness, complacency. My kingdom was small. David’s birth and this new life of mine has made me long to live for a larger kingdom. To believe that God is using all things in my life to move me towards Him. I want to change, CHOOSE TO BELIEVE. Choose to believe God. Choose to believe that God only does what is good. Choose to believe that this one life God has given me to live is a good life. Choose to believe that my happiness is not bound by what others think or what the world views as perfect. Choose to believe, and in believing be changed. Changed to live outside of my life of ease and comfort and live for the larger kingdom of Christ.

Please don’t think that David has not brought me joy. This little boy’s smile melts my heart. His whole face smiles and one eye squints, and it is just adorable. He talks and coos and grins. Sometimes I’m pretty sure he is telling me that everything is going to be alright. I am crazy about him, no different than we were with Lily. No different than if God had given me the child I had pictured in the future. But I choose to believe that this future is better.