My heart outside my body…

I’ve heard that making the decision to have children is making the decision to forever have your heart walking around outside your body.   Last night, as I reclined for several hours in the dim light in the back corner of Georgetown’s NICU with my finally-5lb baby girl warm on my chest, I tried to mentally prepare myself for another unexpected surgery on ‘my heart’ named Avery.   Still one week from her gestational due date, but already 16 weeks old, I told the tiny warrior stories of her great strength, how many people she has already touched, and how much she is loved.  I told her about everyone I could think of who I know is praying for her, and while I recited the long list of love, she seemed to fixate on my freckles and her eyes moved toward the sound of my voice.  I felt the sting of her sharp little nails dig into my skin as our heartbeats touched and I tried to send her every bit of strength and love I had within.   I then chuckled as I realized that this little wonder is stronger than I could ever be.   Heck, she was giving ME strength.  I trust that all who have been parents can relate to the feeling that you would give anything to take your child’s place in a hospital bed or an operating table.  However, they’re undoubtedly much more courageous than we are.

I left the hospital very late and we arrived again this morning very early.  The hours before surgery on ‘my heart’ inevitably always feel like a month.  We took the opportunity to cuddle all morning with Avery before they took her from our arms and placed her into a transport isolette to wheel her away.   We stood by and cried quiet tears and felt the raw pull of not wanting to let her go again with gowned and masked (albeit very kind and undoubtedly talented) strangers.   It was apparent to me even as I melted into Quin’s arms that I was shedding tears for more than this surgery, more than the feeling that her sister was present, and for more than the fact that I was so tired I could hardly stand.   I cried for the very young mother who stood alone watching for her own daughter to return from the OR who told me her baby was (also) a ’23-weeker’ who was now 5 months old and had yet to feel fresh air.  I cried for the reality that I didn’t feel social, or even friendly, when we met a new NICU mom who was facing her first week living in our new hell, even though all I wanted to do was hug her.   I cried for the fact that this isn’t Avery’s last surgery before she can come home.  I cried for all of the unknowns that remain.  I cried because there were so many emotions as the warrior who survives clinged to my chest with pure instinct after I had to give the specialists permission to pry her away for another invasion.  I cried because there are so many unspoken words when you are the mother of micropreemies.   (As they come to me, I will continue to try to “speak” the words here.)

After stopping in the Chapel to put Avery and Sienna’s names on an overflowing prayer board, we went out for some air, grabbed some food, and tried to talk of other things to pass the time.  In a few hours the surgeon called to let us know that she had done really well and that he was “very pleased.”   I finally exhaled.

Since coming back to the NICU sedated with a breathing tube and an eye patch, she has been resting comfortably all afternoon and evening and  her vitals are strong.  She’s currently still off feeds and on IV’s, and they’re hoping to restart her food and get her back on the nasal cannula sometime overnight.  The surgeon will continue to check on her over the next few days and has indicated that he will know if the surgery was effective in relaxing the tension on her retina in a few weeks.  The likelihood of her having vision will not be known for many months.

The days to come will reveal whether we transfer back to Fairfax and what date her next surgery will be.  We’ll post as often as we are physically and emotionally able.   Until then, thank you to the nurses, anesthesiologists, and to Dr. Lai.   Thank you friends, employers, and family for your love, your support, and your continued prayers.

And, thank God for our blessed child, her potential, her strength, and for the hope of tomorrow.  Despite our current unknowns, there could be no greater honor or no greater source of wisdom than to have the opportunity to walk around ‘with our hearts outside our body.’


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7 Responses to My heart outside my body…

  1. Susan McMurray says:

    We are praying for you and for Avery. I hope this surgery saved her eyesight in her left eye. I am starting to believe there is nothing your miracle baby cannot accomplish. She must get that from 2 amazing parents.

    Lots of love and faith from Hawaii!

  2. Somehow you always find the right words to explain your feelings and share your journey with us. You make us feel as if we are walking side by side with you. My NICU journey with Bradon is trivial compared to yours yet your blog brings back so many sights, sounds and smells and is good “therapy” for me. Know that we are all praying for you and sending love and good wishes your way. Avery is a true warrior but then it runs in the family.

  3. Hilary Boboshko says:

    Extra special prayers for Avery’s eye (s) and a smooth successful surgery and recovery. Nick and I have you in our thoughts and prayers each day and also pray that the NICU-itis eases too. Love to you all!

  4. Debbie I says:

    You do not know me, But I have been reading your story. My friend, Leigh Plimmer shared your link with me, and I have become part of ‘your team’. I am so sorry that you lost one of your beautiful babies and I am heart sore that your sweet Avery has such a hard road ahead of her. I know that you both think that she is the warrior, and how brave she is, but take a step back and realize what amazing strong parents the two of you are. Your courage, strength and positive attitude inspire so many people. Never forget to take the time to appreciate each other, just from an outsider looking in, it is apparent that the two of you have an amazing gift in one another.
    They say that we are given what we can handle…. I pray for you that G-d gives you the strength to cope with this challenge and that your beautiful baby grows and thrives and that she lives a long, happy and healthy life with her AMAZING parents.

  5. Oh, Robin…..We thank God for the miracles and strenght He blessed your family with and pray for a lot more miracles and blessings to come. We have Avery on our hearts and prayers.. I am very happy to hear that the surgery went well. We will keep praying.. Lala and Carl Sorenson

  6. Robin and Quinton,
    Avery’s life has touched more people than most lives make an impact when lived for 100 years. Your faith in God’s plan and devotion as parents is nothing short of inspirational to all privileged to hear your story and follow it down these days of uncertainty filled with celebrations, setbacks, and the unknown. I can’t imagine how exhausted you both are and we pray for God’s strength to shine upon you and give you the perserverance you need to make the decisions necessary for Avery’s health and to get her home soon. If you need ANYTHING, we are only a few miles from your house and work in DC so can be there for you if you need us in Alexandria or G’town for any reason at all. All you have to do is ask.
    With Love,
    Lucy, Mike, and Allie Grace Gray

  7. Angel says:

    All I can say is AMEN…. When you cry it helps let go of all the unknowns that build up in you. It is good to cry knowing God is with you and he feels that pain. He sees you struggle. He sees you regain strength. Sienna guided the surgeons hand. and Sienna was there with her sister. I love you both

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