Thanks to Keeping Up With the Kimmels for allowing us to share our story:
Telling our preemie story is difficult; it’s not a story. It’s our life. We are still in the middle of our preemie story and I often wonder if we’ll ever see the “end.” But I do know that I still often feel like our little guy is “on loan” to us and if we can just keep him healthy for the next year or so, then we get to keep him. I know this sounds absolutely ridiculous to most parents…unless you are part of the club that no one really wants to join.
We celebrated Jack’s first birthday (9 months adjusted – preemie moms, you know why we write this clarification) just a few weeks ago, and one of our favorite NICU nurses was there to celebrate with us. We were talking about the good old NICU days (read this in a sarcastic tone please) and I mentioned to her for only the second time to anyone that I thought every day that he would die. She looked at me with such shock and awe…why would I think that? Sorry, what else am I supposed to think when he was born and I didn’t see him for over 24 hours (not even a glimpse after my emergency c-section) and since that day he was not breathing on his own? Or maybe it was the day of my discharge when I watched the respiratory therapist “bag” our little one as doctors and nurses hovered around his isolette. Or, I don’t know, maybe it was the day that I was casually kangarooing and one of our other favorite nurses hastily ripped him out of my arms…at that point I must have blocked out the alarms, because I didn’t realize that he was turning blue and, yet again, not breathing. Thus is the life of a preemie mom in the NICU. It is not normal and it will never be. I have an aunt who works in the medical field (pediatrics) and she was so very helpful during this time if I had medical questions. But she always said that in 6 months, this NICU experience will be a distant memory. As if. It has been over a year since Jack was born and I cannot look at him without what seems like all of the 112 days of his NICU stay flashing through my mind. It is a kind of trauma that will never be forgotten. I used to get hurt/upset/angry/bitter at people and their comments…Oh, he doesn’t look like a preemie anymore? Yeah, well that’s because you can’t see his lungs! Why do those doctors care so much about his weight? He’ll eat when he’s hungry. Again, those doctors know what his lungs look like and are concerned for his health. Yeah, I cringed at those comments and many more. But I know now that everyone was just trying to be helpful and make us feel better (even though, at times, some comments had the opposite effect). But my goal now is to educate. I’ll be the first to admit that I knew nothing about prematurity or infants who are sick at birth. I assumed preemies were smaller and just needed to gain weight. So when people comment, I assume that they are just lucky enough to not have experienced a story like ours. Here it is:
I was very cautious during our pregnancy – no hot dogs, lunch meats, caffeine, etc. We had “help” getting pregnant and the early months were fraught with issues and anxiety. But, by my 6th month things calmed down. As I just stepped foot into the third trimester, I had a headache that just would not go away. It developed into nausea and chills by the 7th day and I called my doctor’s office, but they could not fit me in until Monday. I had sent my husband on his mountain trip, thinking I just had a stomach virus or something. But later that evening, I knew I needed to head to the hospital. Yep, my BP was sky-high (200/110 something). I casually mentioned to the midwife that there must be something wrong with their BP cuff. And she kindly said, “No honey, there is something wrong with you.” Fast forward 4 days, after being transferred to a hospital with a Level 111 NICU and being bounced back & forth from labor and delivery to maternity. When my BP would just not stabilize, it was time to deliver. A nurse commented about how calm I was (could have been the mag), but I really didn’t have any other choice (or did I) and how was I to know that we would end up experiencing a 112 day stay in the NICU? Knowing what I do now, I would have begged and pleaded for them to wait another day…but, I also didn’t want to die. I was pretty well drugged before the c-section, but my stepsister recently reminded me of the conversation about possibly not being able to save both of us (me and my son). Apparently I wanted a say in the matter…but I sure don’t remember that conversation. I have an inkling that there are a few events and conversations that I don’t recall from the week before and weeks after Jack’s birth.
Jack was born on 8/10/10 at 10:12 pm at 28 5/7 weeks. He weighed 2lbs 1oz and was 12 inches long (the size of a ruler). I had spent the week before his birth with a headache that would not go away. By Saturday August 7, the headache was joined by nausea and chills. My doctor’s office was unable to see me that day so I thought I could wait until Monday. However, by Saturday evening I had called my mom to take me to the hospital because I knew the way I was feeling was not right. Little did I know that I would be a mother just a few days later. My blood pressure was extremely high and there was talk of delivering immediately. At that point, I had no idea what prematurity would be like for a baby, but I knew that I did not want to die. I was transferred to a hospital with a level III NICU and was bounced between L&D and the maternity ward until Tuesday (depending on how high or low my BP was). Suddenly on Tuesday evening, August 10th, I was told that it was time to deliver. Because I was on magnesium sulfate, I was surprisingly calm, according to my nurses. Of course, that is because I had no idea what was in store for my little boy. I just knew that I wanted to feel better. I didn’t see Jack until 24 hours later. He was much tinier than my husband and family had described. I just couldn’t fathom what our life would be like now.
Jack spent 112 days in the NICU. So many have asked me how the experience was or how did I feel about the NICU? I have one word: AWFUL. No matter how wonderful the nurses and doctors were (and they are awesome), the experience was an awful one and I never, never want to experience it again. The emotional intensity, the fear, the uncertainty…it cannot be understood by anyone other than those who have had their own NICU experience. And even then, no NICU experience is exactly the same. And it sure isn’t a “rollercoaster” as so many describe it. It was more of a nightmare. Watching a respiratory therapist bag my son on the day I was discharged was awful. Having Jack ripped from my arms as we “kangarooed” was awful. But he wasn’t breathing and needed to be saved. Leaving him every day was awful. Wondering every day if he would die was awful. Trying to function outside the NICU was impossible and, you got it, awful. Trying to explain to people why he couldn’t come home was awful. And don’t get me started on still trying to explain to people why he shouldn’t be exposed to respiratory viruses. It’s awful. But, it has allowed me to channel my teacher energies into educating everyone and anyone about prematurity. Jack was on the ventilator (oscillating and conventional) for 11 days and then on Si-PAP or C-PAP for almost 3 months. His lungs were very immature and slow to grow/heal. Apparently, he was taking the “scenic route” in the NICU, according to one of his doctors. Steroids did help him to get onto Vapotherm and finally nasal cannula. He was discharged 112 days after birth and sent home with O2 support and an NG tube. Feeding was very difficult for Jack because his lungs just didn’t allow him the endurance to eat “normally.” We spent 4 long, disheartening months working on Jack learning to take bottles. We were so glad to bring him home, but we basically brought the NICU home with us without the support of nurses and doctors. Because Jack came home during RSV & flu season, we rarely allowed visitors and took him to doctor appointments only. It was awful (there’s that word again) to bring home your baby and not be able to introduce him to our close family and friends. And, at the one time we most needed the support and help of our family, we were often too afraid to ask for help for fear of exposing him to illness. I struggled daily, and still do, with myself. For I never wanted to be so anxious as a mother, but I also had no other choice. Jack needed to stay healthy so that his lungs could grow and heal. We made it through the first RSV and flu season without illness and Jack was finally without O2 support by July 2011. Our lives are approaching normal but it is still a long journey. We are entering Jack’s second RSV & flu season and are so grateful that he still meets the requirements for Synagis. We also keep O2 cylinders in our home, just in case. I don’t know many parents that have to do that. I keep telling myself that if we can just make it through one more winter, maybe we can relax and start living. I still know that there are many people that question our decisions to limit his exposure…everyone seems to think that babies need to be exposed to build immunities. I have to remind myself that these people never experienced a sick child so they will not understand that there are some babies that don’t “need” to be exposed…not yet anyway. RSV is dangerous to all babies, but even more so to premature babies like Jack. If Jack doesn’t go to the mall or the grocery store until he is two, but stays healthy, I think I will be alright with that!
So that’s the chapter we are on in our preemie story. It isn’t “the end” but thankfully, we are no longer at the beginning. No one expects to have a premature baby. No one expects to have to watch their child struggle to breathe from their first breath. It is a very traumatic experience and takes parenthood to the extreme. I’ve always said that I feel like I’m on a new reality show, “Extreme Parenting.” My husband and I had planned to have more children, but the thought of a second NICU experience is something that we may not be able to handle, physically and emotionally. And we are also sure that we would not want to put another tiny baby through the trauma.