The Dates that Leave Imprints in our Minds

August 26th, 2016. The day that we had our 20 week scan and the perinatologist broke the news to us that something was seriously wrong with our baby’s heart.

January 20, 2017. The day that Regina was finally discharged from the NICU, after 24 long days. She was not feeding by mouth at all.

Last Friday, the scheduler called from the children’s hospital to schedule Regina’s open heart surgery. We scheduled it for May 26, but that could change based on whether an emergency or a heart transplant pops up, or (God forbid) if Regina gets sick. I have no doubt in my mind that whatever date her open heart surgery ends up being, it will be a date etched in my mind forever.

The surgery will take several hours. They are going to open up her chest cavity, stop her heart, and put her on the bypass machine. She will be intubated. She will have a line running from her chest to drain all of the fluid. She will have several scars left on her little chest from this, the greatest of which being the one where her chest was opened. I am going to have to hand off my tiny, precious babe to the surgical team, knowing all of this. It is going to take all of my strength not to clutch her to my chest last minute and run out of there screaming.

She needs this operation. She is dying. Every day I watch her struggle to breathe and gag, retch, and throw up all of her feeds. She cannot cry. She cannot laugh. She cannot eat by mouth. Every night I lie awake and listen to the constant hum of her feeding pump and her gasps and grunts. I wonder if I should turn on all of the lights and check to see if she is in distress. Chest retraction back “to her spine” as the cardiologist says? Nasal flaring? Is she turning blue? The fact of the matter is that she is dying and only by cutting her open and repairing her heart does she have any hope of surviving this.

They say that God hand picks the crosses for you to bear in order to sanctify you and bring you closer to Him. He can give you the grace to bear it, if you only ask. It seems so cruel and heartless sometimes. Why must I bear this cross? Why must Regina? Why can’t we just cruise through a pleasant life and slide on into eternal paradise? Must we climb this exhausting ladder? Jesus waited four days before coming to Lazarus. Four days!! By the time he finally arrived, Lazarus was already dead! Mary and Martha had been mourning the loss of their brother for four days. And when Jesus arrived, what did he do? Did he just chuckle at them and raise Lazarus with the lazy flick of his hand? No. He wept. He mourned the loss of his dear friend, even though he knew he was about to raise him from the dead. He knows my pain. He felt it himself. It’s ok for me to cry sometimes and break down under the weight of it all. But God’s Divine Will is not our will, and we cannot see all ends and purposes like He can. A diamond only becomes a diamond through extreme pressures. Without those pressures, it is just an ugly rock. I am not up to this task. I am nothing without Him. The upside to these trials is that I have no choice but to surrender and trust in Him. Jesus, I trust in you.

Scott and I have been working hard to plant the seeds of faith and tend to the garden that is our family, and we are hoping it bears fruit. What’s that you say? Too heavy-handed a metaphor? I won’t argue with you.

Now, for the crowd sourcing portion of this (admittedly whiny, sorry about that) blog post. I really want to put together a little something for Regina so that (God willing) when she is older she can see how many people were praying for her and loving on her when she was going through this. Any suggestions? I have seen people ask for cards (I guess I would have to get a P.O. Box for that), ask for pictures emailed or sent to them of sweet notes of encouragement from people and their locations, etc.  My brain is a fog these days. What do you think?

Thank you, as always, for all of the prayers and support. We wouldn’t be able to do this without you. Truly.

21 thoughts on “The Dates that Leave Imprints in our Minds

  1. Jane

    I know this is hard, we are all praying for you and Regina.
    God only writes with crooked lines. No matter what happens, your lives are being blessed by Regina. She’s a fighter, she’ll pull through and will be a the light of your life. Trust me, I raised two beautiful boys with Down’s syndrome and they are the light of our lives.

  2. Hafsa

    Reading this broke my heart. I feel for you. We are not in the same situations but I know that heartache when we have to trust other people with our children’s lives and well being. All I can say is I am praying for you and your family and a positive and successful surgery and outcome for Regina!

    1. Post author

      I know, our situations are so different, but I feel so much kinship with you whenever you post about your mama struggles. It is so tough worrying about your baby and having so many unknowns about their future.

  3. Cindy Frye

    Praying for your sweet girl. God has this!!! Easy for me to say!!!! You have to hold on to your faith in Jesus!!! We are human! We worry and yes we cry. Jesus says to walk with him. Spend time in prayer with him!!!! You have a beautiful family! Praise God and stand on his promises!

    Cindy Frye

  4. Maggie

    Sylvia – I was led to your story via FB link from one of my friends. Your story touched my heart for two reasons 1) May 26 happens to be our due date for (surprise!) #5; and 2) one of our kiddos had 10+ hr full skull reconstruction surgery when he was two. While it wasn’t heart surgery, it was brain/head related, probably saved his life, and required over a year of management. We used CaringBridge website, which I found to be quite therapeutic, but also allowed us to create a memory book of all the notes from well-wishers. We were overwhelmed at the number of strangers praying and cheering for our little guy. (Also, he’s healthy!)

    Please know that you, Regina, and your family are in our prayers

    1. Post author

      Thank you so much. And oh my goodness, what a miracle. Thank God for a healthy little boy!!

  5. Katie

    Sylvia – Regina and your family continue to be in my daily prayers; I was (maybe not so) randomly reading today about Saint Mariana of Quito, her feast day is May 26th and she is known to intercede with illness. I’ll be adding another special prayer for her intercession with baby Regina and hope you and the rest of your family have as much peace as possible in the anxious weeks ahead.

    Best wishes and prayers,


    1. Post author

      No way! That is amazing. I will definitely be asking for her intercession.

  6. Krissy Alonzo

    PS. Have you heard of Carepages? We had one for my son. When the worst was over, I printed it out and put it into book form so we have a record of pictures, my updates and everyone’s sweet and loving comments.

  7. Krissy Alonzo

    Ahhh sweet Regina. ❤️ Your post is timely to me… On April 7th, my son with DS had his g-tube removed. It was first surgically placed when he was 3 weeks old, one week before Christmas Day in 2004. (We brought him home from the NICU on Christmas Day.) As I sat in the waiting room, his years of life flashed through my brain. So many times we rushed him to the ER Or called 911 because he was blu-ish and gasping for breath. With him, it was not his heart. It was the cleft in his larynx that caused everything going down his throat to leak into his airway. (They only found it when he was 6 months) This led to a trach and eventually to a series of surgeries that resulted in a full airway reconstruction. After one such surgery, the paralytic he was on wore off and he knocked his ventilator tube loose. He was code blue – the crash cart came in, as well as the minister to comfort my mom and me who were standing by helpless and terrified. What a road it’s been…the Dr interrupted my thoughts to tell me the surgery went great and he was in recovery. The only thing my once medically fragile boy has that others do not is the need for his foods to be puréed. Years with a feeding tube made him lazy… but we’ll get there, I’m sure of it!

    All of this to say… I understand. I can’t even imagine a heart surgery… you must be terrified and sad. I look back on the years of surgeries, hospital stays, therapy appt, Dr appts, paperwork, case workers, traveling out of state for surgeries, all with a child at home, I can’t think of how I possibly made it through. It reminds me of the Footprints poem. I see now HE was carrying me. He’ll carry you, too.

    You and your sweet family are in my prayers. Much love!

  8. sarah isis (@disisd)

    what a beautiful reflection… so true, so open. I see the medical side of all this so I end distancing myself, like emotions-aside, to be objective and to be the doctor of the babies. Thanks for reminding me of the struggle. It helps me be a more caring doctor for my babies.

    Also Jesus has a reason for all this suffering. Amen.

    I think the cards are a good idea for Regina. but yes you will need a PO Box for that. Not sure if you want to start an FB page just for her… but the cards are more tangible things you can keep and she can read when she gets older.

    if you want to text me when you’re worried in the middle of the night, I will soon be up with a newborn anyway — so feel free 🙂

    sending you lots of love.

    1. Post author

      Sarah, you’re such a good mama and doctor. And thank you! Some weepy calls might be in your future.

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