Thursday, March 20, 2014

The birth story

Before my daughter was born, I did not spend much time picturing her.  Some of that was because I was still a resident physician during my pregnancy and worked pretty much up until the day I delivered.  I was too busy and tired for daydreams.  Some of it had to do with us not finding out the gender so baby did not have a name yet.  Either way, though I did not imagine her hair, her nose, or her dimples, I made assumptions.  I assumed she would have a heart that worked properly. I assumed she would nurse, cry, and breathe.  If I had known to wish for these things, I would have. But I assumed.



We named her Willow. She was born on September 16th, 2012 at 1:15 just missing her daddy's birthday by one hour.  My labor had been long and painful, I will spare you the specific details.  I will just say that we were exhausted and had not slept in days.  If I ever thought I was a tough girl, that notion flew out the window after three days of contractions and no sleep.  After I delivered, my doctor immediately handed me my girl. The pain vanished, and I remember thinking that she had to be the most beautiful baby I had ever seen.  Now I know it must be a hormonal thing, but I really believed it.  Josh said I went from yelling (maybe cursing) to telling her I loved her and the whole room that she was SO BEAUTIFUL.  All of my medical training, and I did not see it.  She was perfect.


That moment was cut short as she was taken from my arms, because her skin was blue and her muscle tone was low. She was moved to the baby warmer where, over the next few minutes, she began to have more and more trouble breathing. I watched the nurses and respiratory therapist work calmly but quickly to take care of her. While my doctors were finishing up the aftermath of the delivery, Willow was whisked away to the NICU. Even after that, I really was not overly concerned. I knew that it was not uncommon for babies to have trouble breathing right after birth. I was pretty sure they would give her some oxygen, and she would be back with me shortly. I was not prepared for what happened next.

I had chosen one of my friends and resident classmates as my doctor.  After delivery, she told me that, since they would not allow Josh in the NICU yet, she would go with Willow and keep us informed.  She returned sometime thereafter, and that is when I knew something was very wrong.  She was visibly upset and told me Willow was being intubated because of low oxygen saturation and that they think she may have Down syndrome.  I have heard people say that when faced with shocking news, your world stops.  It is true.  The room, full of doctors and nurses who were also my friends and coworkers, fell quiet as our world fell apart around us.  The next few hours are blurry, but our neonatologist informed us that her echocardiogram showed no large cardiac defects but something called pulmonary hypertension.  He initially tried giving her a medication to reverse this but when it did not, he began talking about emergent transport to the closest pediatric hospital in Greenville, SC. I asked that he instead send us to Charleston where my family lives.  He arranged for this.

Josh and I went to the NICU to see our baby girl before she was flown to Charleston.  She was pale, swollen, and on the ventilator.  She was naked and more wires than baby.  I immediately started trying to figure out if she had Down syndrome.  I could not tell. All of my medical training, and I could not tell.  I am ashamed now to say that I felt disconnected from her.  The vision of perfection had vanished, and I thought that this must be one big mistake.  She can’t be mine.  Everyone I knew had healthy babies.  Surely mine would be healthy too.  I pulled out a white crocheted hat that a patient of mine had made for Willow, placed it on her head, and handed her off to the medics to fly her to Charleston.

I immediately afterwards began trying to convince my OBGYN to release me from the hospital.  My doctor told me that if I could walk, then I could leave.  So against my better judgement, I walked out of the hospital only hours after delivering.  Josh’s family, who had driven to our house to await the arrival of the baby, drove us to Charleston.  We arrived at MUSC, the hospital where I trained, and we went immediately to the pediatric cardiac ICU.  When we saw her in the ICU that night, though she was still on the ventilator, she was better sedated and appeared peaceful.  Josh and I had sworn that if we had a girl, she would NOT wear pink.  I am not a girlie girl, and my daughter would not be one either. But in the ICU bed with pink socks and hat, we both agreed that she could wear whatever she wanted.  In fact, she kind of looked good in pink.

She was quickly transferred to the regular NICU after the cardiologist confirmed that she had no large cardiac defect.  In the regular NICU, I met with an attending who gave Josh and I the first glimmer of hope we had been given all day.  She said that pulmonary hypertension is often self-limiting and should resolve soon and that she did not see the same characteristics that the folks in the previous hospital did regarding her likelihood of Down syndrome.

The next morning we came for rounds and met with her doctors (so many doctors: an attending, a fellow, several residents, and a medical student).  We discussed her case and things seemed to change rapidly after that.  She was not improving as they had hoped, and we started talking about ECMO.  To me, ECMO seemed like such an extreme and invasive thing, but it seemed to be the only decision to make.  So we signed the consent, and by that night, Willow had two large catheters coming out of her neck, going into a machine that does the work of her heart and her lungs, and puts the blood back into her body.  Basically, ECMO does not cure pulmonary hypertension.  It merely allows the body time to rest in hopes that it will heal itself.  They had to paralyze her for the procedure, and they set her respiratory rate very low.  When I saw her that evening, she was so still, her chest did not even rise and fall to breathe.  I thought she was dead.  I began having doubts.  Had we done the right thing? Would it be better if she died than to suffer like this? Would it be better if she died than for us to suffer like this?

Several days after starting ECMO, our attending physician changed.  This new doctor called himself Jersey.  True story. I mean, you really can’t make this stuff up.  He looked and acted as you would imagine a physician who called himself Jersey would.  Our last attending spoke in a way that was clear and direct, some might even say awkward and indifferent. But we liked it. We didn't need a friend. We just wanted the facts. Jersey talked too much for our taste. We would get lost in all of the analogies, and his casual manner was unnerving. On Thursday morning, he accidentally gave us the life-changing news that our little girl did, in fact, have Down syndrome.  I had been asking every day if we had received the results of the chromosome testing yet. I was pretty much obsessed.  And every day I was told that the results were not back yet.  That day, at the end of rounds, he said something along the lines of that probably just has something to do with her Downs syndrome . He could tell by the look on our faces that he had made a mistake and quickly said You know her Fish test came back positive for Trisomy 21, right? We did not.

This plunged me into a whole new level of grief.  Until that moment, I had held out hope that the suspicion had been wrong.  That news just stole from us the last bit of hope for normalcy after this.  Being in the medical field, I understood that many babies are on the ventilator or even ECMO but can recover and go on to live normal lives.  Down Syndrome is a life-long thing.  Josh found a private room that the hospital had and I aired it all.  What I said to Josh and God that day are probably better left in that room, but I will say that I have never been as raw as I was that day.  I am a Southern girl and a doctor and used to having it all together.  I turned everyone away from the hospital that day including my sister who had flown all of the way from Haiti where she lived.  I thought I had ruined our lives.  My broken body had provided broken eggs and given us a broken baby. I thought that maybe I had done something so terrible that my husband and child were being punished. I thought I would never feel happy again. Would I ever laugh or smile? Nighttime was the worst. Sleep was restless, and I would wake up several times throughout the night. There would be a brief moment after I awakened when I felt normal, but then I would remember it all again. The nightmare would replay, and grief would sweep over me once again. I wanted nothing more than to rewind to a week ago when I was blissfully ignorant to the struggles that lay before me. We were so happy back then, and life was simple.

Now to make something clear, we made an educated decision not to have testing for Down Syndrome.  Looking back with some perspective, I would not change that decision.  Besides the fact that I was 28 years old so my risk was low and the fact that our insurance charged us $250 out of pocket, we also personally believe today, as we did then, that all life has value no matter the IQ, physical abilities, or number of chromosomes. I write this not to engage in some sort of political debate (I am terrible at debates. You will win) nor to encourage or discourage testing. That is a personal decision. I just say it to explain our perspective in all of this.  We would not have terminated the pregnancy had we known this, however, this did not change the fact that I would have never chosen it. It was not in the plans.  I have always admired parents who take care of children with special needs but somewhere deep down, in a place I had shared only with my husband, I harbored a deep-seeded fear of doing so myself.

For some reason, the news of her Down Syndrome seemed even more personal than anything else before it.  We had struggled initially with family and friends' different understandings about what was appropriate to share and put on social media for all to see.  I was deeply hurt when personal pictures and information we were just dealing with ourselves were posted for all to see.  By the time I realized it had been done, it had been shared, re-posted, and could not be retrieved.  Well, we only had to learn that lesson once.  We held the news of her Down Syndrome close for some time telling only immediate family.  It was painful to say the words. Down Syndrome.

During the days that followed, we began to collect diagnoses: Trisomy 21, Pulmonary Hypertension, ASD, PDA, Hirschprung’s Disease, Hypothyroid, failed hearing test.  Each one felt like a punch in the gut. We would be reeling from one blow, and as soon as we had caught our breath, we were hit with another.  We were so worried that she would die.  Then we accepted that she would die but worried she would die before Josh ever got to hold her.  I remember asking the doctors with as much composure as I could muster to just tell us.  If she is going to die, tell us.  We’ll hold her, kiss her, and stop the torture.

In a time where I could not see past the NICU and the machines to any type of future, something began to happen.  People around me started having dreams.  If that sounds weird to you, then just skip this paragraph. Its a little weird for me too, but its the truth. First, it was my dad.  He said he saw her in a dream running the awkward run of a child just getting their bearings.  I did not think much of this at the time.  Then it was my best friend and kindred spirit.  She dreamed of Willow as a healthy happy baby at home, out of the hospital and away from the machines.  Then it was my cousin’s wife.  All around us, in a time where my vision seemed blocked, God began bringing the vision to others.  Also in a time when I was unable to pray, others prayed for us. Hundreds of people all around the world were praying for us. And even when I didn't feel it or see it, He was all around us.

As we fought and cried, something began to change.  If there was any blessing in all of her struggles, it was that we knew with certainty that we wanted her.  Sometime over that first week, we fell in love.  I looked at her cute little nose and her tiny little hands and knew she was mine.  She was the one with me in the ER in the middle of the night on call who would kick me and remind me that I was not alone.  It had been her all along.  She is the one we had planned for, hoped for, but had never been able to picture.  This was her.  We were scared about her future and about our own, but she was ours.  Down syndrome soon became something we could say a little easier and something we would forget to mention when asked about her medical history.  We shifted our attention to learning and fighting for her.  We also began to see that life could have happiness again.  I distinctly remember the first time I laughed after Willow was born.  Josh and I were walking outside about two weeks after she was born to get some fresh air from the sterile NICU.  Josh started smirking to himself.  I have the best idea for a bumper sticker, he said. What? I asked. My child has more chromosomes than your honor roll student. I laughed like a marathon runner would down a bottle of Gatorade.  It felt foreign, but it felt good.  We made this bumper sticker immediately and have one on each of our cars now.  Still makes me laugh every time I read it.

Three days before Willow was born, I was having contractions that would pick up at night and calm down during the day.  I was trying to distract myself from the discomfort that is a pregnancy nearing its end and the heat of South Carolina in September. I decided that I wanted to walk downtown to an outdoor concert series and dragged my husband and friends with me.  They all knew better than to argue with a pregnant woman.  While we were watching the band play, I began to notice two gentlemen in the crowd.  They both had Down Syndrome and were both dancing to the music.  I mean, not the normal white-boy sway, but really dancing.  Eyes closed, hands up, and hips shaking.  It was the kind of abandon that is rarely seen in this world, and I was drawn in. I smiled and watched as they danced and wished I was not too pregnant and uncomfortable to join them.  Towards the end of the song set, as if it was routine for them, they got up on stage and joined in a choreographed dance with the band.  The crowd went wild.  It was almost as if God was preparing me in that moment for what was coming.  I had no idea at the time that I would never view a scene like this in the same way again.

After a week, Willow was weaned off of ECMO. Josh got to hold her for the first time, and we wept.  Several days later, she was weaned off of the ventilator.  We cheered.  Because then we could hold her as much as we wanted.  And we did.  All day every day.  They did an echocardiogram immediately after coming off of ECMO, and we were told that her pulmonary hypertension was improving and should eventually become a non-issue.  She had three small cardiac defects that could be easily repaired later: an ASD, PDA, and coarctation.  She also had a bowel issue that would require resection.  The surgery would be best done later so we would do rectal washouts three or four times per day to relieve the stool she was unable to pass on her own.  We were moved to the Special Care Unit for perhaps the longer, more frustrating task of teaching her to eat.  All of the negative stimuli that Willow had to associate with her mouth, coupled with her already low muscle tone, made it difficult for her to learn to breathe and eat at the same time.  For an inpatient, Type A personality like me, this was a difficult process.  In the meantime, she was being fed through an NG tube.  After about three weeks of trying with little progress, we began to realize this would be a longer process than we had hoped and began making longer term plans.  Our surgeon said he could not place a permanent feeding tube now as it would get in the way of the future surgery to fix her bowels.  So after much debate, we were taught how to place NG tubes, and it was decided that we would go home to continue working on feeding while continuing feeding through an NG tube.




Now that we had a plan, we started thinking about going home.  We started discussing our pediatrician and all of our follow-up visits.  On the day before we were supposed to go home, I asked when they wanted me to follow-up with cardiology.  The attending doctor said we did not need to see cardiology.  Not thinking at all about her pulmonary hypertension, I reminded her that Willow had a PDA that would need to be checked for closure.  She had forgotten.  She then said we would get another echo before we left the hospital just to be sure.  The next morning (the day we were supposed to be discharged) they performed an echo that showed that she still had severe pulmonary hypertension.  This was not good news, and we were informed that the cardiologists wanted to start her on a medication for the pulmonary hypertension and monitor her for a day.  They did that and the next day we came home. We would have to have close cardiology follow-up and a heart catheterization in the future, but tomorrow we got to go home.

Praise the Lord, everybody said. We did not. We did not know how to praise Him for the good things without blaming him for the pain and suffering. So we said nothing. Before some of you start worrying about the status of our souls, worry not. God was not afraid of my anger and confusion. With time, my heart has begun to turn. Perhaps in the future I will write a little more about my spiritual journey, but I will say for now that gradually my anger was been replaced with incredible gratitude over the unique soul we have been entrusted with parenting. I will probably never understand why Willow has to suffer in ways other children will not, and it is still painful to watch. But it is hard to continue to be angry when I feel so very, very thankful.

We returned home from the NICU with a long list of things we had to do every day for Willow: rectal washouts, tube feeds, medications six times per day, therapies, and doctors appointments. Our house had been cleaned and stocked by all our dear friends with craft beer for Josh and fresh fruit and vegetables for me.  One friend even cleaned our toilets.  I am pretty sure that is my love language, by the way.  If you clean my bathroom, we are friends for life.  The time that followed is another story for another day, because Willow’s story of struggle and survival did not end the day we came home. And since it took me a year and a half to write this, who knows if or when I will ever get the rest written. I have felt since Willow was born that I should write her story down. I made excuses. I am too busy, which I am. I am not a good writer, also true. It is too personal, yes, it is, but so what? I do not know what is supposed to come from it. I only know that I could not shake the feeling that I should write and share. So here it is.




For my friends and family, thank you for loving Willow so very well and for saying the normal things like how cute she is or how much she looks like me. Thank you for staying away when we asked you to because of germs. Thank you for not staying too far away or for too long. Thank you to those who let us know you were still there months later when things were still hard. We can never thank you enough. For someone going through something similar, I guess I hope you can feel encouraged. You are not alone. For those who have come before me on this journey of special needs, thank you. Thank you for sharing your stories and for fighting battles for our children so that they have opportunities now that they never did in the past. For those who are unfamiliar with this world, I hope to give you a glimpse into it. It may not be normal or flashy, but it is still oh, so beautiful.  I hope that you will see the beauty and value in life different than your own. I hope that when faced with the opportunity, you choose patience and inclusivity. Be a friend, offer a job, or invite them to your birthday party. Because this is what we want for our Willow.  Maybe you will realize that you are not so different.


Also I want you to know that if she was yours, you’d love her too.


NH

21 comments:

  1. Thank you so much for your transparency. I pray that it will be an encouragement to many as it has been to me. Y'all have been prayed for and loved from afar. You are so right when you say it is hard to hold onto anger when you choose gratitude. Thankfulness changes perspective. Many blessings to you and yours!

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    1. Thanks for taking the time to comment. Love you guys, and I'm sure Willow and the boys would be great friends if yall still lived here.

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  2. This is beautifully written and I am so glad that you decided to share this! Your openness and honesty is amazing and I know it will touch so many lives. She is a perfect, precious, cute little girl who has the best parents!

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    1. Your blog was one of the few that inspired me to write my own story.

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  3. What a beautiful story and beautiful girl! Thank you so much for sharing!

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  4. Nancy, I don't know you, but I trained at Self and know many of your friends. This is beautifully done, and, while I can only imagine the angst, your story is inspiring to so many. I truly believe God is all right with the anger and questioning- just look at the book of Job... much like Job, you have been blessed, and I believe will be double blessed again along your journey.

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    1. Thanks for taking the time to read and respond even though we have never met. I hope you loved your training at Self as much as I did. Where are you practicing now?

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  5. Thank you and many blessings to you and your family!!!!

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  6. This is such a beautifully written love story. You have been blessed with a beautiful baby girl and she has been blessed to have found such wonderful parents that love her unconditionally. HE has placed one of his special angels in your care because HE knew you would be the best parents for her, to nurture her, love her and take care of her. God Bless you, Josh and little Willow.

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  7. Nancy,

    I have not gotten to meet you, but I am Josh's cousin third cousin. Cody and I are pretty close, and my mother even works with your beautiful mother-in-law. Willow's story is one of absolute grace, beauty, and understanding. Her story is a direct testimony through her as well as you and Josh for the glory of God. I was born with Hemifacial Microsomia. Having been born different than the typical "normal" and looking different, I feel even more connected to my beautiful baby cousin whom I have never even met. Every time I log in to Facebook the pictures that Josh post just make me smile, and they fill my heart with joy. Do not feel the need to thank people for telling you how cute Willow is...because she most certainly is. Do not feel the need to thank people for telling you that she looks like you...because she most certainly does. The glory of God shines right through Miss Willow, and let me tell you she is darling enough to stand on her own in the genuine compliment department. Although the struggles are fierce, how blessed are you and Josh to raise such a beautiful child of God. Likewise, how blessed is Willow to be raised by such wonderful, God-fearing parents.

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    1. Hali,
      I cannot believe I never responded to this. Thank you for your kind words. They mean so much coming from someone who, in many ways, gets it. I hope Willow can meet you one day.
      NH

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  8. Okay, I'll admit it, I cried! Thank you for sharing your story--for being real. I have prayed for Willow, and I hope to meet your precious little girl in person one day.

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  9. As a mother of an 11 week & 4 day early preemie... I understand your frustration and appreciate your transparency and emotion of having a baby with problems and multiple health issues. The guilt of having "broken eggs" is tremendous and a painful roller coaster ride of twists and turns, and ups and downs.

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  10. I sat on my couch with my laptop in my lap reading your story and crying, as I thought of my own situation 15 years ago, when my journey began with my Megan...let me tell you, the unknown, though at times frightening, is wonderful, and filled with love, so much love! You will be told you are loved more times than you ever imagined, and you will know it is the purest love humanly possible! Your Willow is beautiful! She is perfect just the way she is, and she will bring more joy to your home than you will know what to do with, she will make you laugh, and smile for the rest of your life!

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  11. So I just hopped over from ETST and read every word of this story. I'm always one for a good birth story and your demeanor and attitude towards your challenges are just so awesome. Willow was definitely meant for you and she's just precious. You are a beautiful writer my friend.

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  12. I received your bumper sticker today in the mail. Thank you. And thank you for sharing your story. I hope to read more of your blog.

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  13. My heart goes out to your Dear family. I am in the middle of my Masters degree in Nursing and I am reading for class on the subject of DS. I am appalled at what I am reading on the subject. there has been an increase of this DS 31.1% during 1979-2003. What is gong on here. I with my personal professional opinion feel it is the vaccines. I would love to do a study with you on this subject. My email is specialangel222@gmail.com Please feel free to contact me.

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  14. Thank you for sharing your story of your beautiful daughter Willow (such a beautiful name). December 10, 3004 I gave birth to my son Peter who I knew would be born with Down Syndrome. His father who disappeared not long after Peter was born talked me into an amnio that I did not want due to the risks as I has lost 7 pregnancies prior and was afraid to lose my son. However, I am glad I knew as I was ae to celebrate his life when he was born and not be shocked to death on his birth day. The day I found out I ried and it seemed that all the dreams I had for his life were shattered. His father wanted me to terminate and that was not a thought in my mind. I did cry that day but when I awoke the next morning I had a peace over me that everything would be ok. I started researching and learning about what Down Syndrome was and what to expect. Thankfully Peter was born with an ASD and VSD which closed on their own and did not need any surgeries after birth and if all remains the way it has no heart surgeries are needed. He did however spend 13 days in NICU due to his bilirubin. I was able to take him home December 24, 2004 right in time for Christmas! Peter has taught mr so much more than I could ever teach him and he has brought so much love and life into everyone's life. I am sure your beautiful Willow is doing the same! Peter is very high functioning and loves to sing and dance! I am probably rambling on as it is late at night when I am writing this which I came across after reading about a man who I know through social media story about his 3 year old daughter's fight with cancer. May God bless you, your husband and Willow always! ����������������

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  15. Also, I would love to purchase a bumper sticker from you I truly love it! Please let me know how I can get one. Thank you!

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