July 3rd 2012. The day my life changed forever. The day I realized that the word normal no longer applied to my family. The ups and downs, the pain, the happiness, the hopelessness, the frustration and many more feelings I cannot even begin to explain have happened since that day. It is almost too much to explain, because that day, and the days that followed changed my life forever. Most people will tell you that getting pregnant and the pregnancy are the most tumultuous and amazing times for a “to be” parent. While this is true, there are a lot of other variables when it comes to being a man and a future father who has to deal with a pregnant, hormonal, and at some times emotional wife. Dads tend to get left behind, no one asks him how he’s doing, no one knows he is about to have a baby, and no one really understands what a Dad’s job is during the pregnancy. Now my wife on the other hand had people smiling at her, talking to her, asking her questions, holding doors for her, and basically coddling her because they knew SHE was pregnant. I guess that is how it’s supposed to be right? Dads have to love the changes, deal with the emotions, and basically gain as much weight as their wives because that is what a good Dad does! Our pregnancy was rather normal for the most part but all of that was about to change.
On July 3rd 2012, my wife emailed me and said “something” was wrong. My son was not moving around as much as he had been previously and she was concerned. I immediately thought the worst and was unable to grasp how to handle this type of situation. Do I flip out? Is it really that serious? This will be ok … right?? My wife was calmer than I was, she usually is. She called the doctor and they gave her a few suggestions, most were easy but they all came with the same directions – go to the hospital immediately! So we did. The entire drive to pick up my wife was filled with sheer terror. I thought my son was in serious danger. I even thought he was dead. I could only imagine the feeling of having to be strong enough for my wife and my family while I was burying the most important piece of me. I finally learned what true parental panic is really about. I kept hearing my mother’s voice saying “one day you’ll understand when you have kids of your own”. I thought that line was so cliché and just so stupid as a kid. I thought my mother was always trying to teach me lessons and make me understand things that were never going to be important in my life. I couldn’t have been more wrong! I picked up my wife and she knew I was losing it immediately. She kept telling me “everything will be fine”, “you’re overreacting”. I tried to share her optimism but I couldn’t. I was too nervous, afraid, and sad to process what was going on.
We arrived at OB Triage and they checked us in and told us a nurse would be in shortly to check my son’s hear beat. It must have been two, maybe three minutes before the nurse came back into the room, but it felt like an eternity! I kept sitting there wondering “is this really happening to us”? Was this real? I could not imagine my life without my son, Asher. Even choosing his name was a proud day for me as a “to be” parent! I remember sitting there saying his name over and over again just realizing I was going to be someone’s parent. Me? A guy who probably partied too much, drank too much and a guy who did things how he wanted, when he wanted. All of that was about to change! When you realize that you ARE someone’s parent, it is the most overwhelmingly awe-inspiring day of your life. As we sat there and had the nurse searching for Asher’s heart beat I thought every moment we could not hear his little heartbeat was a moment closer to what I used to be. A moment closer to the old me, the guy who was now not going to be someone’s parent, the guy who was going to have to live with this tragedy for the rest of his life. I sat there and just waited…waited for a sound…anything. After a minute or two we heard a faint heartbeat, a heartbeat nonetheless and my wife and I let out a huge sigh of relief. He was ok, he was alive and all we wanted to do was go home and forget about this awful day.
After being in OB Triage for a few hours my wife and I could tell that something was wrong. No one had come back in to discuss when we were going to be discharged. My wife was hooked up to a fetal monitoring system and when a nurse finally arrived they told us that things were not what they appeared to be. Something was wrong and further tests were necessary. They were monitoring Asher’s heartbeat and seeing him “desat”, which basically means his heart beat was dropping to a dangerously low level every so often because of serious distress in the womb. He continued to bounce back up very quickly but the doctors and nurses were concerned nonetheless. Our nurse came in and told us the doctors were admitting my wife for the night just to keep an eye on things and make sure Asher was doing ok. We were not leaving. We would not be able to put this day behind us. This was just the beginning!
That night, as a nurse frantically ran into our room, put an oxygen mask on my wife and turned her on her side I realized just how serious this situation had become. Terror is a strange feeling. For me it makes me sick, literally. It makes me feel like I am about to burn up from the inside. I was watching the most terrifying experience of my life and there was little I could do to help. For the first time in my life I felt completely helpless…worthless. Asher was now desatting more than a normal baby should and the doctors and nurses knew something was wrong. He was in distress. Was the cord wrapped around his neck? Was it the position my wife was sitting in? Was something wrong with the placenta? These were all possible scenarios but no one knew for sure, not even the medical team. In this instance Asher bounced back and thankfully with extra oxygen and fluids he was starting to show signs of improvement. Before being admitted we had our doctor visit us and break everything down. I wanted to know why and how this had happened and unfortunately even the best Neonatal doctors could not give us an answer. They said this type of situation was rare and that further observation was necessary. Our doctor than dropped a bomb shell on us, my wife who was 28 weeks pregnant, would either deliver my son in the next few days or stay in the hospital for the next 12 weeks on bed rest and try to deliver him closer to term. We sat together in awe of what that meant…she would not be coming home, my son could be a preemie, we are here for the next 12 weeks, he might be disabled, he might be extremely sick. My biggest concern was what that meant for our immediate future? You start to think you are a selfish person when you hear that your child is coming sooner than expected. You start to say to doctors, nurses, or anyone who would listen “yeah BUT I don’t have his room done, I didn’t save enough money”. You start thinking of how ill prepared you are to handle this situation and how hopeless you now feel. As a first time parent you start to think to yourself, is this what pregnancy is like? Is this stress, this anguish, this fear…is this normal?
The stress, anguish and fear IS normal for most parents but especially for NICU parents and it is something my wife and I would have to get used to as the days wore on. Our first night was a sign of things to come. The high risk doctors had ordered a bio-physical profile ultrasound for Asher. With this type of ultra sound they check your baby’s heart rate, muscle tone, movement, breathing, and the amount of amniotic fluid around the baby. As a parent of a sick baby these types of tests are nerve racking enough because the ultra sound technicians cannot “legally” say anything to you about what the baby is doing. In this instance Asher was responding well to a few of the checks they were doing but once again his heart rate dropped and the technician leapt out of her chair and left the room frantically, coming back with another woman who sat down, as if nothing was wrong and finished the ultra sound. My wife and I kept asking this new woman why she was taking over and the response was the same “oh I am just here to finish up, the other technician had asked me to check something”. We left as if everything was fine.
We found out later that Asher’s heart rate dipped so low during the ultrasound that they had prepared an emergency C-section to get him out almost as soon as the test was over. Luckily for us he was rebounding so well that doctors had decided to do continuous monitoring on my son while my wife was in the hospital. They were giving Asher every chance to stay in the womb where they felt he was the safest. If there were signs that he was in distress they would deliver him early and give him the necessary treatments to save his life and allow him the best chance for survival. That night a neonatologist visited us to tell us what the next steps would be if we had to deliver Asher early. She told us all of the statistics and what to expect. Among the things that stood out to us was the very real possibility that my son would have serious disabilities and developmental setbacks. At his gestational age he had a 95% chance of survival but at what cost to his future health? We were scared … I was terrified to the point of sickness. I wanted to throw up.
My wife was in the hospital for close to nine days on constant fetal monitoring. The stress and constant questioning on whether or not Asher was ok was a daily occurrence. We asked every doctor what all of this meant and would we ever be allowed to go home. Hearing that some of the best doctors in the country could not identify a problem or come up with a solution was extremely frustrating. My wife was sitting in a hospital bed, feeling fine but hooked up to monitors to keep track of my son’s daily progress. I was sleeping at the hospital every night and was finding it hard to keep track of what day it was, what other responsibilities I had to take care of, and how to be there for my wife emotionally. I tried to balance all of this but was not able to handle the daily grind as well as I should have. I needed help and thank god her mother was flying out to give me the break I really felt I needed for my own sanity. The first night I slept in my home since my wife was at the hospital was a nervous night. I kept checking my phone to see if I received a call, I was dreaming of what might happen, are they ok? I had all of these things racing through my head and naturally, because of this, sleep was not an option. After a restless night I finally fell asleep around five in the morning. At about eight thirty I got the call that I was dreading. Asher’s hear beat had dropped for almost nine minutes and was not coming back up … a C-section was ordered and I needed to get to the hospital immediately because they were going to deliver my son!
I walked into my wife’s room and only one nurse was present, I thought to myself “what is going on here? Why aren’t we moving? Why are we not in the operating room?” I was told that Asher’s heart rate had rebounded quickly and the doctors believed that it was not the right time to do a C-section as he was showing signs of improvement. Again, no one could tell us what was going on. Was he compressing his chord? Was the chord tied in a knot? Were there issues with the placenta? No one knew! I sat next to my wife trying to comfort her. She was shaken up, as was I. We were in a holding pattern, waiting for the next time we would have to do this for real and that was a terrifying proposition.
For almost nine full days my wife and I endured various tests, ultra sounds, and constant issues with the monitoring devices. Things were looking better though and we were ordered off twenty four hour monitoring and moved to a room that was nowhere near labor and delivery and was much better for our own relaxation and even our psyche. They would monitor Asher for three hours a day and things were looking good and we were being told if Asher’s desats went away (he was only averaging one a day) we might be able to go home. We were starting to see a light at the end of the tunnel! The various doctors that we met were the only cause for concern. The reason I say that is because you hear a hundred different “ways” that this could all pan out. Some doctors are very nice and talk about the positive outcomes and others talk to you from a very clinical, almost non-human place that terrifies you. On my wife’s ninth day we had a doctor tell us that if my son scored a four out of eight or lower on his next bio-physical profile ultra sound they would order an immediate C-section and get him out in a matter of minutes. Now I was confused! How did we go from “you might be able to come home” to “you might be having this baby anytime now”? I was frustrated, upset, and concerned I was not being told the whole story so I left work to be with my wife and ask questions. Questions I felt I needed to ask and answers I needed to hear so I could prepare myself for what was to come next.
During our last bio physical profile things did not look good, Asher was not moving a lot, he was not looking good and he was in distress. He scored a two out of eight and we knew, “this was happening now”. We were prepped for his delivery and my wife was to be rushed into the operating room for an emergency C-section. We were both terrified and I kept thinking “this is best for him”, “he needs this” because he was in such distress. I couldn’t help thinking that this was too soon, he was only 28 weeks gestational age and this meant he would be coming two and a half months early! Would he even survive? What issues will he have? Am I prepared for this? In the O.R. I was a wreck! I held my wife’s hand and waited for him to come out; once he did I heard nothing! Not a cry, not a scream, I just heard the doctor say “he is out”. The Neo Natal team was there, they took over. I heard what seemed like various sounds, a rush of people, chaos to my ears! I sat there hearing a beeping noise over and over again and I looked up past the sheet that was dividing my wife’s lower half and my view and saw the Neo Natal team doing CPR on my son. He was born flat lined, no pulse, no ounce of energy or life. I looked down, trying to hold it together but I thought “this is it, I have lost my son”. I tried to contain myself but almost threw a fit right there in the operating room. I wanted to curse God for what he had done, I almost did. Then, I heard the nurse say you can go look at your son, he was given a lifesaving blood transfusion and had reacted favorably to it so we were on the move to the Newborn Intensive Care Unit or NICU as the hospital staff calls it. I walked with my son all the way to his room, peeling off my scrubs and being told directions from a NICU nurse about what was to happen next. I almost couldn’t breathe, my son was here but I was too terrified to be happy or proud. Instead I stood there hoping he would make it through the night and through those first three critical days and after that we would see just how sick this little guy really was.
Asher was born at 28 weeks gestational age and he weighed 910 grams or about 2 lbs even. He was extremely sick. They believe he was born anemic but they do not know why. His chord was normal, placenta was normal but while he was in the womb he was not receiving enough nutrients or oxygen. Because of these issues his body shut down every organ except for his brain and his heart. The NICU staff was explaining to me how sick and critical he really was. I seemed to “get it” because when I went into his room I saw all the tubes, machines, and wires going into Asher’s body. He looked frail, almost without life and I felt like I did not need someone explaining to me how dire his situation was. Wheeling my wife down to see Asher for the first time was tough. She wanted to see him so badly that I could not really tell her what she was walking into. I was so afraid to see him because I was not sure if this would be the last time I would see him or if the doctor was about to tell me something awful that they found. My wife held Asher’s hand and told him “I love you and you will make it”. I stood there and tried to keep it together but I had a tough time leaving that room without wanting to break down. After we sat in my wife’s hospital room and I held her hand I started to cry. I let out all my anger, frustration, and fear. I knew that from that night on I was going to be strong for my son because there was only one thing I was determined for him to do, and that was to get better. I knew I had to let all of that “stuff” go or it would be stuck to me every time I went to visit him and he would feel and know that I had given up on him. I never wanted my son to feel that and I had come to realize that he was tougher than I would ever be and that he had not given up at all, he was just beginning to fight!
After Asher’s fourth day at the NICU the staff was shocked to see how well he was responding to all of his treatments. He started to pee and poop and show us all that his organs were fine and that he was starting to turn the first corner. When the jaundice lights came off of him I was able to see just how adorable he really was. For being so small he was perfect in every way. He was proportional in size and just had the most adorable face and the biggest eyes I had ever seen!!!! I was literally blown away and I would just sit and stare at him for as long as I could! His biggest challenges were to come and those were chest x-rays, a brain ultra sound, and the constant monitoring of his organs to make sure they functioned properly. There have been some bumps in the road (lung issues, eye issues, hearing issues) but he has come through those stronger, healthier, and happier than ever. To hear the doctor’s come in and do their rounds in a matter of seconds is something that only another NICU parent can truly identify with. In the beginning of his stay in the NICU rounds were comprised of all of the things that were going right with Asher, then followed up with all of the things going wrong, and all of the things that could go wrong. To hear your doctor walk in and say “he is doing excellent” makes you want to drop to your knees and cry! The feeling is incredible! To hear that he is a miracle or that he has defied the odds really does not hit home until you speak with the nurses and doctors that delivered him and worked with him during his first few days of life. During those first few days he was given a 50/50 chance of survival. Today they see him and marvel at his progress and his health. They walk in and just gasp at how handsome and healthy he has become!
My son was is in the NICU for 77 days. He went through hundreds of tests, passed hundreds of milestones, and was the talk of the NICU. Every nurse knew his story and wanted to see him, hold him, and feed him. He was what they called a “wimpy white boy”. I hated that name because as his father I knew he was tougher than I could ever hope to be. Our story is always changing and there have been tough times. Asher is deaf, a product of the insurmountable odds he was dealt at birth. After hearing that diagnosis my wife and I cried. We cried because he could not hear, we cried because he was born into this world in the worst possible way, and we cried for the pregnancy we didn’t have. Once we grieved we realized how lucky we truly are. My son is healthy, he is beautiful, he does not have any major issues. Science can cure his deafness; it can give him a cochlear implant so he can one day hear. Other families in the NICU are not as lucky. There are hundreds of other babies born into this world with severe disabilities. Most are born to drug addicted mothers, families who do not want them, families who will not visit them, and families who just cannot deal with how disabled their child is and how best to help them. Prematurity is more common than you think. Children born at 23 weeks gestational age or older can now survive and live healthy, normal lives. Modern science has given parents the ultimate gifts over the past twenty years. For my wife and I our gift was Asher. His gift is more than just being a handsome, loving baby boy. It is much more than that! His gift is hope. His gift is love. His gift is strength. His gift is that he is my son and I will never go back to the person I once was. And I couldn’t be happier!
As a parent and a father my son is the greatest miracle I have ever received! As I look back I think of everything my wife and I have been through and a lot of it is hard to relive. Looking at old pictures brings me back to those feelings of hopelessness, frustration and anger. Today I look at my son and realize he is destined for great things. He is a fighter! He is tougher than I will ever be and tougher than anyone I have ever met in my life. He challenges me every day to be a better person, husband, and father because what I have been through in my life pales in comparison to what he has been through in his short time here on earth! I hope that every parent or person that reads this story understands how important life is and how it continues to be. Remember that your children need you to be a positive influence in their lives and they need you to release your fear, apprehension, pain and anger. They feel what you feel and all they want is a positive, loving presence to nurture and guide them on this journey that they call life. That is all this is, a journey. For my son his journey is just beginning but the effect his arrival has made on my life and that of my wife’s has been amazing and I thank him for every last bit of it!
Asher, if and when you read this … I love you and am so proud of you!
Love,
Dad
