Somewhere in America, at this very moment, there is a mother sobbing uncontrollably next to an isolette in a foreign place called the NICU and she praying for the life of her sick newborn. She probably feels alone, terrified and confused on how she got there. I’m sure she was not prepared. One year ago, that mother was me. On June 28th 2011, we did not have any warning that we were about to endure one of the biggest storms that any parent could ever face. A child who is so sick that it literally sends you into an emotional tail spin and complete loss of control in every aspect of your life. Mentally, physically, financially,and emotionally.
On June 28th, 2011 I was scheduled for my 4th c-section to deliver Maggie Ryan Doherty. I had an uneventful pregnancy and there was no reason to think that there would be any complications. As we waited for our turn to go into the operating room my husband and I were excited and giddy to meet our 4th child. We had no idea about the chaos that would follow.
Eventually, we made our way into the operating room and all was going well until the surgeon looked over the drape with wide eyes to share some shocking news with me. “Thank God we delivered you today. You could have ruptured and hemorrhaged at any moment. Quite honestly, it is a miracle that you are here and you and the baby are safe.” Apparently, I had a very thin uterine window. As a labor and delivery nurse, I knew how serious this could have been and how lucky I was. A few minutes later she held Maggie up over the drape, just as they did with all of my babies, and I wept tears of joy. She was a big, beautiful newborn with a head full of dark hair. She gave a grunty cry and they quickly swooped her over to the warmer. I was laying on the operating table and I obviously couldn’t move so I relied on my hearing to make sure everything was ok. Almost immediately I knew something was wrong. I heard the nurses suctioning her but I didn’t hear any crying in between. “Is she ok?” I asked. Heart stopping silence. Nobody said a word but they continued to work on her. I knew this wasn’t good. I could hear the oxygen, NICU nurses mumbling and an ambu bag breathing for my little girl. “We are working on her.” one of the nurses finally answered me. “Why don’t I hear crying?” I asked bluntly. Again…silence. This moment was one of my darkest, lowest moments. I was confused, worried, terrified and terribly heart-broken. I heard an isolette being wheeled into the room and the NICU team transfer her to what would be her home for the next month. “We are bringing Maggie to the NICU, we will give you a full report as soon as she is stable and we know something.” I laid on the operating room table with an empty heart, crying and holding my husband’s hand. The OR was quiet and as much as I tried not to cry, I couldn’t stop sobbing. “What happened? Why?” I begged God…”Please….no…don’t take my baby.”
The surgeon finished and they wheeled me into a recovery room and there I sat with my husband for the next 2 hours clueless on what was happening to Maggie. Every 15 minutes a nurse would walk in and check my vitals and I would ask the same question over and over. “How is the baby?” And she responded with this same answer, “She has an entire team working on her and they aren’t sure what is wrong. We will take you to see her as soon as we can.” I was pissed at her generic answer. She was treating me like a patient, not a nurse. This was the first time, I was delivering in a place where I did not work. “Nobody knows me here. I’m never gonna get a real answer” I thought. My cell phone was ringing off the freaking hook. Family and friends were calling to hear the “good news”? My voice mail was full of “Congratulations” messages and I just laid in that recovery room lifeless and numb waiting for some new information on my sweet baby. I didn’t call anyone. What would I say? I didn’t really get a chance to see her. I didn’t know how much she weighed and…. I didn’t even know if she was alive?? Finally…the NICU team came into my room and sat on the edge of my bed. “What the hell happened?” I asked with a quiver in my voice. “Well? We aren’t sure but Maggie is very sick. She is on a ventilator and she has lots of tubes and wires. Would you like us to bring you to her?” “YES!” I said immediately. I finally got a chance to see my baby. As bad as it was….it felt good to look at her. I reached up and put my finger in her tiny hands. I wanted her to know I was there.
The neonatologist came over and put his hand on my shoulder. “Are you Maggie’s mom?” “Yes!” I answered. He apologized for the length of time that passed before I could see her but explained that it was more important to get her stable. I understood. Judging from the amount of tubes, I knew they had been busy. I was speechless. I just sat and stared at my baby. Why did this happen? What did I do wrong? He filled in the silence as if he could read my mind. “We aren’t sure but we think Maggie has a serious condition called PPHN (persistent pulmonary hypertension). We see it in full term babies from time to time and they are generally very sick. It isn’t caused by anything you did, it is just one of those fluke things that happens at delivery. I wish I could assure you that she will be fine and recover completely but unfortunately it is one of those things that we have to take one hour at a time.” “Ok.” I answered humbly. He was kind and professional but the news stunned me. I was not prepared for this. My mind went blank. The only thing I remembered from nursing school about PPHN was “it’s bad, very bad.”
Our family and friends spent the next 27 days praying for Maggie (Thank you!!!!!!). During that time she had a blood transfusion, her lungs each collapsed twice, she was on 2 different ventilators and I watched a team of 11 people perform a code on her (that is an image I can’t seem to shake). She had a central line, feeding tubes, IV’s, chest tubes, catheters and oxygen. There was not one square inch of her tiny body that didn’t have a tube or wire of some type monitoring every move she made. Against every natural instinct, I was encouraged NOT to touch my baby. Any type of stimulation could cause stress to her little body and send her into a tail spin. There was not much I could do except watch the numbers. I became obsessed with watching her numbers on the screen. Then the day came when I needed to leave the “number watching” to the NICU staff and go home to my other children. They needed me too. It was so hard to leave Maggie. I felt like she needed me to protect her but honestly…I wasn’t able to do much and the NICU staff was pretty amazing. The nurses supported me and encouraged me to call any time of day.
I drove home with an empty car seat, a hospital bracelet and a heavy heart. I desperately wanted her home. It did not feel natural to leave her at the hospital. I soon began my daily commutes back and forth. Splitting my time between my 3 at home and my NICU baby(thank goodness I had lots of family around to help pick up the slack). Although we were separated, I still searched for ways to bond with her. I travelled to and fro daily delivering a grand total of 106 bottles of breast milk that I pumped while we were apart ( Why yes…I am proud of all 106 bottles. That’s a shit ton of bottles and have I mentioned how I DESPISE pumping? Hate it. If you ever want to feel like a real live cow, give it a whirl). Anyway, I did it for Maggie. I felt like she needed all the help I could give her. Soon she began hitting some real milestones (opening her eyes, hearing her first cry and giving her first bath). We religiously celebrated these milestones but the joy that we felt was always buffered with just as many set backs. (increased ventilator demands, collapsed lungs and terrible drug withdrawals from the heavy sedation). It always seemed to be one step forward, two steps back. She was getting better everyday but the progress was slow and sometimes frustrating.
There was one day in particular when I felt like I just couldn’t take it any more. I was at the scrub sink where I did my 3 minute scrub everyday before I could see Maggie.
This is the place where I met and befriended “Luke’s mom” only a week prior . She was the only other mom in the NICU with a full term baby like Maggie and it just so happened that Luke also had PPHN. I felt a bond with her. She understood more than anyone. She understood why I felt jealous of the other mom’s who were able to hold their 1 lb premies and I wasn’t allowed to hold my sweet Maggie. She understood how devastating and shocking the diagnosis of PPHN was. She too felt torn between children at home and a sick baby in the NICU. Today was different. Luke’s mom wasn’t herself. She was more sad than usual. Her sweet Luke took a turn for the worse. It was a long day and in the end God took Luke. It frightened me and upset me so badly that I was physically shaking. It reminded me that nobody is safe. He can take anyone at anytime. We don’t have to understand why for it to happen. It’s a taboo, horrible ,sad subject but the reality was..sometimes…. babies go to heaven. I went home that day and hugged my kids tight. I remember sobbing uncontrollably in the shower and I remember asking anyone and everyone for prayers. I was at a gut wrenching low. I’m not even sure if I ever shared this story with anyone at the time? Selfishly, I didn’t want anyone to lose hope in Maggie. There was one prayer that I still remember vividly. It was the one that helped me get through my day and changed how I would handle the remainder of Maggie’s NICU stay. It gave me the strength to rely on faith. My girlfriend wrote it on my facebook wall. Imagine that? Facebook. Huh? It said “Have strength. If you do not have the strength…do not worry. God will carry you until you pass this hurdle” and he did. He carried me for many days and many nights. He must have been tired of carrying me towards the end because I was emotionally and physically totally drained. I was heavier than I have ever been in my entire life but I did have faith. I specifically remember feeling a sense of calm when I finally put the situation in his hands. I loved to sit next to Maggie’s NICU crib. You could feel the aura of prayer around her. It was so peaceful. She had hundreds of people praying for her and it felt good.
When you have a sick baby, all of those worries that seem so real, life changing and extremely important suddenly seem insignificant and stupid. My whole thought process got stripped down to 2 things. Life and death. I specifically remember getting pissed off at the lady next door arguing with her husband about which outfit they were going to put on the baby to take him home. I wanted to cry just listening to them. It made me sick, yet….I might have been that woman in my past. It’s easy to get caught up in the silly things in life that don’t mean a thing.
Today I am humbled and blessed to celebrate my baby girl’s first birthday. What a gift she has been to me!!!!! That first month was absolute hell but today she is 100 percent healthy! She has no side effects or any developmental delays. She is a spunky, happy and healthy 1 year old. Amazing. Maggie has honestly changed the way I see the world. She is a blessing to our family and will forever be known as my miracle. All children are miracles. Maggie reminds me that they should never, ever be taken for granted. Her story is one that I don’t want to forget. It is a good message to live by in general. Life is short, live it to the fullest. As cliché as it is, there are so many people who don’t do it. They get caught up in all of the bullshit and forget about the good stuff. We all gotta stop complaining. I guarantee you that there is somebody else out there in a worse situation. There is always somebody else with a sicker child, a worse marriage, a more stressful job,less money and less friends. It doesn’t matter. You gotta make the best of the moments you have on earth. There is no guarantee that you will be here tomorrow.
My gift to Maggie is this post. It’s not my typical post but the message is still positive. I want to remember that long road we travelled down to get where we are today. I think it’s important to document the moments that mold us into who we are. One day, she will read it and she will realize that she is not and never will be alone in this world. She was special from the moment she was born. She has already touched more lives than most adults and she carries a beautiful message. When life gets bad…really bad..and you feel like you have absolutely nothing, you always have faith. Faith will carry you in his arms just as it carried me. Happy first birthday Maggie Ryan! I’m forever grateful to have you in my life.