The day our twins were born was a complete surprise. I had a perfect pregnancy with no complications and an A+ from every doctor up to that point. I had started feeling sharp pain in my lower abdomen through Sunday night, but had been walking around a LOT and thought I just needed to rest. As the pain progressed throughout Monday I thought I had a possible bladder infection and finally called the doctor’s office that evening to get an opinion, they told me to head to the hospital since it was twins and they didn’t want to chance anything. By the time my husband and I arrived at the ER, the pain was on and off every couple of minutes and quite intense. An hour later the monitor showed major contractions approximately two minutes apart; I was 24 weeks, 1 day.
The hospital started me on a max dose of magnesium to stop the contractions and planned to transfer me to the regional hospital where the Level 3 NICU was, just in case. The transfer never happened, and to this day I don’t know why and will always regret not knowing. I made it through a painful and restless night off and on with contractions before the nurse change in the morning, when they finally checked me again. I was 4 cm dilated and my first son was coming. An emergency C-section followed within the hour and soon after my sons were born, Wesley Harrison (1 lb, 4 oz) and Jackson William (1 lb, 8 oz). The boys were due July 1, 2012 but it was only March 13; I was 24 weeks, 2 days. Both boys were rushed to the NICU right away and were transferred via ambulance later that day to the Level 3 unit across town. I wasn’t permitted to go with them due to my C-section and had to stay behind until they released me. This decision, that was not mine, breaks my heart every day.
My son Jackson William lived 38 hours. He died of respiratory failure while my husband, alone, held him. I never had a chance to see or speak to or touch my son while he lived and am forever heartbroken. I will never forget my husband’s words when he called to tell me our Jackson wasn’t going to make it. I left the hospital and everything behind, took a taxi over to my babies, and my husband and I held our little boy for hours through the night. No words can describe or heal that night.
If losing a son unexpectedly, only hours after our whole world was turned upside down, wasn’t bad enough, the next morning we were told our son Wesley had a grade four brain bleed. If he lived, we were told, he would surely have Cerebral Palsy or some form of brain damage. He was suffering, critical, and not worth saving was the message we repeatedly received from the neonatologists. His PDA (heart valve) was open and he couldn’t maintain his blood pressure without an immediate surgery, his respiratory situation was dire and he was on the highest of ventilators, and before a week passed he developed NEC, a severe and deadly infection in the stomach that requires emergency surgery. I couldn’t imagine a world where my baby would grow up without his brother and thought it was only a matter of time before God took Wesley to be with his Jackson.
However, that was not the plan. I know in my heart that Jackson’s soul went straight to Wesley when he passed and Jackson perched his angel wings directly over his brother, never once letting him down! My husband and I made it clear that every effort was to be made to save our baby’s life, no matter what his brain scans showed. If God wanted Wesley, we thought, He could take him anytime; He didn’t need our help! The first few weeks were awful, for lack of a better word, as Wesley contracted every NICU ailment there was to contract, from infections to gross malnutrition, from respiratory failure to bio-patch burns and the heartbreaking phrase, “ we’ve done everything we can.” At one point his blood pressure was so low we were told he would not likely make it through the night. I have never prayed so hard for anything before I prayed for my son that night. I now believe in miracles and there absolutely is a God. He saved Wesley that night, there is no other explanation!
Our Wesley spent 149 days in the NICU. He survived seven surgeries, including four stomach surgeries, a heart surgery, a broviac surgery, and laser eye surgery; all before he was 4 months old. Wesley was on five different ventilators during his stay in the NICU but came home without any respiratory support. He was born at 1 lb, 4 oz, and 11.75″and left the hospital weighing over 7 lbs, 19″ long. Wesley is now 13 months old (almost 10 months adjusted) and weighs 20 lbs exactly. He eats 100% through a g-tube and attends weekly therapy sessions for Occupational, Physical, and Speech therapy. Although his brain bleed has caused some delays in his fine motor skills, along with being a micro-preemie and five months in the NICU, he does not have Cerebral Palsy or any other discernible brain damage as we were told he would. He sits up, stands, rolls over, smiles, laughs, babbles, reaches for and holds toys, loves Mickey Mouse Clubhouse, baths, and his puppy dog, and is without a doubt one of the happiest and most joyful babies you’ll ever meet.
I could absolutely write a book about our NICU experience: the good, the bad, and the ugly! Being there for five months was an eye opening and scary experience, every single day. The nurses were both our heroes and stressors. The neonatologists, while they saved Wesley’s life and we are eternally grateful, were (some) at times more harmful to us as parents, mentally, than I think was fair or necessary. The surgeons were and are our heroes; and one in particular who never doubted Wesley for a minute and saved his life (and our lives) multiple times. The families we met in the NICU and the relationships we established with them are invaluable. I’ve never been so scared, helpless, desperate, exhausted, hopeless, grieved, grateful, relieved, happy, or thankful in my life as I was in the NICU.
My husband and I entered parenthood the hard way, but we love our son more fiercely than we could have ever thought possible and every day truly is a blessing. Wesley has exceeded every expectation and continues to surprise me every day! He is a miracle, by all definitions. He fought for us when he had no reason to and is without a doubt the strongest person I know! He is blessed with a personal angel in his brother and they both make us so proud every day! There are so many things I would change about our entire NICU experience, including being there period! However, all we can do now is reflect on that experience and fight and be there for Wesley when he needs us from here forward! Our job now is to make sure he becomes all that he can be… he is my little angel!