Tuesday, April 2, 2013

Counting Stars: Our Miracle Baby

Carley Jean is one of two names we had picked out for our sweet little baby girl.  It is a combination of family names and meaningful names.  My dad's (little known) first name is Carlon; John's mom's middle name is Jean, as is my paternal grandma's; and my mom goes by the double name Sue Ann.  John's dad is Mark Anthony Sullivan, and his older brother's name is Mark Anthony Sullivan, so he pretty well got that covered.  "Carley Jean" is a tribute to our parents- to their unending love and support of their children, for being really great parents.  We also wanted our sweet little baby girl to have a meaningful name, something picked just for her.  Something that speaks volumes to where she has come from and who she will become.  Something that emanates the goodness of her creator.  Something that reflects the uniqueness of the life she was brought into.

"Jean" means God is gracious

"Carley" means free

God's graciousness has radiated from our story even from the beginning.  And not just from our most recent story, but from our WHOLE story!  From the first of our love, God has been so gracious to these two undeserving servants.  His gifts and mercies are endless, which is much easier to see now that I understand fully every good and perfect gift is from above.

"Free" is a little more difficult to explain.  As we were choosing names, I became attached to the idea of her name meaning "free," but really couldn't explain why (side note: Carly with a "y" and no "e" does not mean the same thing!  It means "little, woman," which was just not at all what we were going for.  Thus the spelling "Carley" instead).  After she was born the explanation came upon me all at once, and its significance was overwhelming.  In an instant all of my perpetual sadness and fear immediately turned into celebration and joy!  Immediately!  Carley Jean is God's gracious gift to John and I- her presence here frees us from the cage of sadness brought by uncertainty and disease.  God frees us through our sweet little baby girl, through Carley Jean!  See, God IS gracious!

From the moment she arrived, the veil of worry and sadness was lifted from our minds- even now we continue to live in a state of thanksgiving and perpetual praise.  I went to sleep the night before delivery feeling more worried than ever.  And rightly so, I might add.  I was about to deliver a baby 6 weeks early with no way of knowing how healthy she would be when she came out.  With no way of knowing if I could withstand a surgery.  With no way of knowing any outcome for sure.  So I was a little worried.  I woke up the morning of the 14th with the words of the song "Whom Shall I Fear" by Chris Tomlin on my mind and felt so empowered that the God of angel armies is always by my side.  I thought about that moment hours later and thought about how ironic it was that I had woken up needing assurance and comfort when at the end of the day I was completely elated and basking in the blessings of the day.

Carley Jean was delivered Thursday March 14 via planned c-section.  We heard her cry in the operating room from the other side of the partition, held her in our arms, and decided (finally) on a name before she was taken for observation a few minutes later.  That's right, she came out breathing, she was stable enough for us to see her, and she was strong enough for us to HOLD her minutes after she was born.

 She never went to the NICU, was never put on oxygen, never developed jaundice, never had low blood sugar, never had difficulty eating, never needed to be in an incubator for more than an hour at a time.

She's a miracle.

They kept her in a transition nursery for a few hours for observation before releasing her to the regular nursery.  They told us that she would need to stay in the nursery in the incubator, but they would bring her to us for 30 minutes every three hours.  They brought her to us once and we kept her the rest of the night.  She stayed every night in our room with us.  She ate (from the bottle) immediately and never had a problem with sucking or swallowing.  We had a baby 6 weeks early at 8:04am, and by 8:04 pm we were holding her as our own in our arms without any tubes or wires or gloves or worries or concerns of any kind.

She's a miracle.

I had a very uneventful surgery.  I had amazing nurses every step of the way, including an Ezell-Harding graduate whose husband grew up next to my husband; a CRNA who was a cardiac NP (uh, hello- super qualified to be sitting at my head); a surgeon who prayed with us before operating; a husband who did NOT get queezy at all during surgery; and an incredible support staff.  I had an arterial line put in to monitor my BP continually throughout surgery, but my BP was mostly stable the whole time.  I had a spinal block for anesthesia instead of being put completely to sleep, so John could be in there too and we could both be alert to see our little girl.  Recovery was also quick and uneventful.  I was on a cardiac monitor to watch for any immediate changes, but it was discontinued after 3 hours when I went to a regular room.  On our way up we went to see Carley Jean in transition nursery.  She had been grunting periodically, showing mild respiratory distress, but it resolved after only a few hours and SHE went to a regular room.  That's right, we were BOTH in regular rooms like regular people with regular problems.

But what I really mean is that this high risk cancer patient momma and her 6 week premature less than 5 pound baby were both so well taken care of by The Lord God Almighty that we both made it through delivery with the best possible outcome.  Every step was best case scenario.  Every person we encountered was a blessing to us.  There were no obstacles to overcome.  He handed this one to us just as we had all been asking for.  Every prayer was answered for us.  The God of angel armies was always by our side.

We had a steady stream of visitors who came to celebrate our little one with us.  Family, church friends, college friends, lifelong friends.  After so much sadness it was and still is amazing to be able to rejoice with people in our lives instead of mourning.

Carley Jean and I both came home 4 days after delivery.  C section patients leave after 3 or 4 days, and up to 4 days is what was covered by insurance.  So I was discharged after a routine stay, no interventions needed.  Carley Jean was a rock star in the hospital and was also discharged after 4 days.  I will say it again: NO NICU, NO oxygen, NO jaundice, NO hypoglycemia, NO trouble eating, NO incubator, NO prolonged hospital stay.

She's a miracle.

This was certainly not the childbirth scenario that I had envisioned or planned.  It was not preferable.  And it was certainly not your typical 40 weeks contraction contraction contraction water breaks contraction grab the bags drive to the hospital contraction contraction contraction for hours and hours push push push ouch ouch ouch push push push push BABY stitch stitch breastfeed breastfeed all is well scenario.  In fact, none of those things happened except that we did drive to the hospital.  But for us in our situation, what we had was perfect.  I would have preferred to not have a c section and to be able to cary my baby to term and to able to breastfeed (I can't because of the treatment for the tumor).  But at the same time, if ever there were a person to care for a premature sleepy snugly baby, IT WOULD BE ME.  I love doing all those things anyway :)  Really, I actually asked The Lord for a snugly baby.  And goodness gracious, I would say we have one!!  So ideal birth scenario?  No way.  Perfect for the time and situation?  Absolutely.  Yet another example of how The Lord provides.

We brought our sweet little baby girl home around midday, but it wasn't until the evening when the fullness of all that had happened set in on me.  As we were about to change her, we took Carley Jean into our room and set her down on our bed.  Up until that moment I had felt so elated and thankful and was basking in the goodness of The Lord and what he had done for us in the hospital.  In that moment, however, I looked down and saw MY baby laying on MY bed in MY home.  She was here.  She was really with us.  She was really ours.  To keep.  Forever.  My thoughts raced through all the times I laid in that bed with tears streaming down my face praying that she would live.  Praying that I would live.  Preparing myself for a reality that maybe we would never get to meet her because of the cancer, or maybe that she would never get to meet me because of the cancer.  Being completely consumed by the sadness of our reality, of the waiting, of the changing.  I looked at the miracle sitting on the emblem of all my doubts and worries, and the thought pierced me so deeply:

I can't believe we made it this far.  I can't believe we made it.  I can't believe we made it.

I don't think I really believed that it was possible for us to ever get the point where I could bring home a perfectly healthy baby in my arms after only 4 days in the hospital.  I didn't believe that neither of us would make it without being defeated by the disease that plagues me.  I don't think I really believed that we would sidestep EVERY obstacle, maybe most but not all.  I certainly could not have ever asked or imagined that this moment would ever come.  As I gazed at my baby laying on my bed, the reality of all the blessings collided with the memory of all the prayers I prayed in that same bed, and I was overcome emotions, overcome with... JOY.  I still tear up every time I think of that moment :)  This isn't a great picture, but I will cherish it forever.

So now we've had Carley Jean for two and a half weeks.  She is an awesome little baby.  She sleeps almost all the time because she is still incubating, just on the outside instead of on the inside.  She is still eating like a champion.  When we went to the pediatrician on Thursday she had gained 9 ounces in 6 days weighing in at 5lbs 2oz and measuring 19.5 inches- an inch and a half  longer than when she was born!!  She is tiny and precious and awesome.

There's a song by Andrew Peterson that I have been listening to constantly since our amazing encounter with him a couple months ago.  It's called God of My Fathers and you should all buy it on iTunes.  There's a line towards the end that says "Now we're counting starts and counting sand, little feet and little hands, we're counting joys.  We pray you'll know them as you knew us when you wove us, as you hold us hold them please hold them."  (Andrew if you are reading this, I think maybe I should be getting compensated for how much PR you are getting from my blog.  Just a thought.)  It's a reminder to us about how God promised Abraham that his descendants would outnumber the stars in the sky or the sand on the sea shore.  It reminds us that just as God kept his promise that he made to Abraham, he keeps the promises he makes to us as well.  We are counting stars with Carley Jean Sullivan and with all the miracles she has brought with her.

Changing gears completely, I have some other updates.  I had a cardiac MRI last week after the amazing results from the CT and MRI and just got the results from it.  The cardiac MRI that I had last week looks almost the same as the one I had in November- just the one tumor that is the same size as it was in November with no additional masses!  That's great news, it just confirms what we thought we already knew from the echo.  So now the next move is a biopsy to confirm the diagnosis before starting treatment.  The biopsy will likely be on Monday, so I would appreciate your prayers surrounding that time period.  Prayers for faith and confidence and that The Lord would steal our worries from us, as well as for a seamless biopsy with a skilled staff.  I am not excited about having the biopsy, but it's just part of what needs to be done, so I am doing it.  Reluctantly?  Yes.  But doing it nonetheless :)

Thank you for your support and prayers.  It has been amazing to see how many people have been following our story and praying for us.  I am realizing now that this is not my story, that it is God's story of faithfulness as seen in the Sullivan family.  The feelings of reluctancy I once had about sharing the inmost worries of my soul and private medical information have been removed by the overwhelming response I've seen to what God is doing in our lives.  So keep on sharing :)


  1. Praising God with you! I met you once when you all were getting ready to move back to Tennessee at Fourth with Micah. I keep up with you through him and your blog and he was more than happy to show me pictures of his precious niece =) at church. I will be praying for your biopsy and that it is very uneventful and just another avenue for God to be glorified. Thank you for your blog and your willingness to share your story. God bless you!

  2. She is perfect. So thrilled for the three of you.

  3. Hi friends! I'm curious how are the perfect parents are doing!? : )
    I am confident you are both (esp. John) still as perfect as ever!
    Love you all.
    Nancy Osman

    1. Especially John??? Where's the love Nancy!?

      We are both doing great! Certainly not perfect. Although I will say that when you have a baby this easy, you have to work hard to mess it up :)

      Love you sister.

  4. I just love you so much! I'm overwhelmed with thankfulness and praise! AMEN!