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My Sunshine Girl by Erin Epstein

Sometimes I still cannot believe that you were real Too beautiful, too good to be true Weeks spent holding you close to me, gone so fast You defied the odds Born wailing, not even done growing That’s my little girl My sunshine baby with a HUGE spirit Only two pounds and 6 ounces, but what a strong little girl You amazed me Every movement, every ounce, every time your eyes would open wide looking at me I couldn’t have been prouder of you I prayed for you to be strong I prayed for you to be able to withstand the storm we faced together You amazed everyone The truest form of a miracle How could one twin survive the birth of another? Such a tiny little girl to defy such enormous odds We didn’t know that the clock was ticking from the moment you were born 2 1/2 months in the NICU hoping and praying, delighted over every milestone We held you and we sang to you We told you stories about all the things we had hoped to do Counting down the days until we thought you’d be coming home Your closet filled Your bassinet and changing table ready So many people who wanted to meet you But we never saw it coming The Doctor, down on her knees with a look of sorrow that crumbled my heart - “She has severe pulmonary hypertension and we can no longer treat her here” those words linger in my mind I held you until it was time to go Feeling helpless but so badly wanting to comfort you Quickly and abruptly they escorted us out with tears streaming down my face I was not allowed to sit in the back of the ambulance with you Only to view you through a tiny camera The only car ride I ever took with you outside of my womb Terrified to lose my little girl This was a world so different from the one that we were used to How badly I wished to see the familiar, kind and smiling faces Life was no longer the same I couldn’t hold you close to me anymore In a matter of days, you took a quick turn for the worst “I’m afraid your baby might die” I heard him say while a piece of me died too. Three weeks in purgatory Three weeks of blood draws Three weeks of scans Three weeks without answers They poked, they prodded Sign here and sign there I tried to be your voice I became remarkably familiar with their medical jargon I tried my best to be a step ahead I researched, I studied I tried to find the cure not wanting to believe that there was none Pins and needles every second, every minute, every hour Traumatized Terrified to leave your room Heart palpitations Every night afraid to sleep Nightmares in my conscious state and nightmares in my dreams Praying you would hold on another day Pleading with God to heal you I wanted so badly to be able to protect you Powerless After all we had been through After all you overcame to be in this world HOW could we be here now? You became so ill right before my very eyes For some many weeks I didn’t know I barely had the chance to grieve your brother My heart still yearning for my Son How could I survive losing you too? When we least expected it our world was shattered You passed away peacefully in my arms I want the world to know, that no Mother ever foresees a day where she will stand over her newborn baby and tell her how proud of her she is knowing these might be the last words her baby hears No Mother ever sees a day that she will whisper in her babies ear that it’s ok for her to go heaven To give her the permission to be in peace To tell her that she wishes she could stay but that she won’t be angry with her if she has to go Her big brother is there waiting for her No Mother in any circumstance sees a day where she will have to give back a piece of her own beating heart without ever being given a choice My ray of sunshine I loved you more than anything in this entire world Thank you for gifting us with borrowed time My heart was never ready to let you go

Dylan Charles and Madelyn Joy were twins, born at different times. Dylan's water broke at 18 weeks due to an infection. Despite this, my Maternal Fetal Medicine Doctor was able to instruct my obstetrician on how to do an emergent procedure, which would stop Madelyn from being delivered with her brother. This procedure ran a very high risk of further infection, but despite the poor odds, Madelyn made it another 9 weeks. She was born at 27 weeks old, thrived upon birth and was doing far better than anticipated. At two months old, Madelyn was diagnosed with a severe lung disease that ultimately took her life. Both of Madelyn's Mothers, and all of her family, feel so blessed to have been able to meet and get to know her. We thank her for all of the gifts that she gave us in her short, but miraculous, life.

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