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.
We met Andrea (my sister), her three girls (Charlie, Nora, Abi Grace) and Morgan, and we went swimming. Well, Lily and I swam.
And David did what he loves most…
Lily got a fish. She named him Pluto.
David has made progress this week. He is grasping a rattle and bringing to his mouth.
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.
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!