Today’s story of perseverance comes from Cami Reynolds and her experience having a child in the NICU.
Mom to: Cici, age 9; Caffrey, age 6; and Capri, age 3.
Briefly describe your experience having a baby in the NICU, and how it might differ from a ‘normal’ birthing experience.
With my first child it had been that picture perfect journey you see in the movies. We got pregnant easy, had no complications, labor and delivery were simple, and stress free, she came out gazing into our eyes, snuggled us, and latched right away! When our daughter was about 18 months old we decided it was time to start trying for number two. Again, we got pregnant very easily, and we soon learned it was a baby boy! We were ecstatic! My pregnancy was normal, our son was measuring normal, up until about 34 weeks. I remember going in to that appointment, and telling my OB, “I just feel so small!” She took my measurements and she pulled out her notes from previous appointments, and I hadn’t shown any growth in 2 weeks. My OB has always aired on the safe side, and if I’m worried about something then she will order the tests, and we get it checked out. So, into Maternal Fetal Medicine I went. Baby Boy was measuring small, but he was proportional. They wanted me to come in twice a week for Non-Stress Tests, and we would do an ultrasound again in a week. About 4 weeks later, I had shown hardly any growth, and between MFM, and my OB, we decided it was better to get this tiny baby out, then to keep him in. So at 38.5 weeks I was induced.
I wasn’t nervous. My daughter came at 39 weeks, and she was fine. The doctors were all telling me that my baby boy was healthy, just tiny, so I had nothing to worry about. We got to the hospital. It was fairly quick, and on August 26, 2015 at 8:53 PM our son Caffrey was born. Delivery was as easy as it could have been, and my baby boy was finally here. My doctor put him on my chest, and I immediately asked my nurse what was wrong with him. They told me he was great, his APGAR score was higher than my daughters had been, and they just kept reassuring me. I just didn’t feel right about their responses. I honestly do not remember how long it was, only a few seconds or minutes, but Caffrey stopped breathing, right there in my arms. A nurse grabbed him from me, pressed a button, and a massive herd of people were in our room working on my precious baby. I didn’t know what was going on. I hadn’t even delivered my placenta yet. Little did I know my husband was on the other side of the room watching this respiratory team resuscitate our brand new tiny baby.
The respiratory team was able to get him back. Shortly after that they took him to the NICU, I was able to see him. They had not placed him on any oxygen yet, as they thought he should have been stronger, because he was a 38 weeker. The nurses let me pick him up. I didn’t get him 3 inches off the table and he crashed again. In the first 24 hours of life he was resuscitated 3-4 times. The last time being when he developed a pneumothorax, which is a hole in his lung, releasing oxygen into his chest cavity. I remember being asleep, and the nurse called my room, asking for my permission to do a chest tube, and intubate. Caffrey spent the next 10 days on a ventilator. From the time of his birth he also was having seizures. Our NICU doctor was warning us that these were not small seizures, and our son could very well have lasting effects from these seizures. We were heart broken. He first had an ultrasound on his head, then an EEG, both came back inconclusive. So, we had no choice but to wait until he was off oxygen so that we could get him to an MRI machine. This was very hard, not knowing anything!
The second day of Caffrey’s life was just one thing after the other, I think almost everything that could go wrong did. They found an infection, so they immediately did a spinal tap, and it was negative. They tested for pneumonia, it was negative. They kept running blood cultures, and nothing was matching up. So they treated him with a 10-day broad spectrum antibiotic. At the same time, he was being treated for low bilirubin levels, and shortly after he finished that treatment, it appeared his liver wasn’t functioning hardly at all. He was treated for the second type of bilirubin, and was just shy of getting a blood transfusion. That was the one positive thing, he didn’t have to do that. Our little guy received IV, after IV, and his tiny veins kept failing, so he unfortunately had to receive a PICC Line.
On day five, things had started to calm down, it seemed like all of the surprises were out of the way, and Caffrey’s status was stable. He hadn’t shown a lot of improvements, but he wasn’t declining anymore either. I remember sitting there on day five, and I was having a huge breakdown. Of course, it was shift change and we had gotten a new nurse. This nurse, changed everything! She took one look at me, and said, “you need to hold your baby!” Caffrey was five days old, and I hadn’t actually held him. It took I think four to six people to move that corded, and vented baby into my arms, but oh my goodness, I needed that, and I believe Caffrey did too! This wonderful nurse, knew exactly what we needed, she stayed with us on every shift until Caffrey was discharged. She pushed him. She was confident in her skills, and she was confident in us!
Fast-forward to day 10, Caffrey had stopped seizing. His tiny body was getting stronger and stronger. His antibiotics had run their course, and this little fighter decided he was done with his vent. He pulled it out on his own! The nurses couldn’t believe it. They weaned him to a CPAP, then high flow, then a normal nasal cannula, and then before day 12 he was completely breathing on his own.
We had the most incredible neurologist visit us, she read all of his results from his previous tests, and she ordered an MRI. After seeing those results, she spent several hours with us. She watched Caffrey, she held him, she performed small exercises with him, and finally she told us, he was perfect! He’s tiny, but there was zero evidence to fear that he wouldn’t live a normal life. She reassured us that if he wasn’t hitting milestones or that if we were ever concerned, that she would be happy to reevaluate him at any time. This was a huge weight off our shoulders. Our baby boy was going to be ok!
On day 14, Chris and I, got to bring our baby boy home! Our two-year-old daughter Cici, got to meet and hold her brother for the very first time in what seemed like an eternity. It’s so cliche to say, but that moment I vividly remember thinking, “Wow, I had no idea I could love like this!” Being a parent changes you, it opens your heart in ways that I just didn’t realize before. Our story ended happily, I am very aware others aren’t so lucky. Watching your child be so vulnerable, and know there is nothing I could do for him, was very very difficult. You blame yourself, your body for doing this to him, the list goes on and on. I am grateful for the outcome we had, and I do not take for granted any moment I get to spend with any of my beautiful children!
Who or what helped keep you grounded when you found yourself in the NICU with your baby?
My husband and I were completely crushed. We were young, we hadn’t been married all that long. And we were not prepared for this at all. When Caffrey’s birth didn’t go as expected, we were crushed. Our parents on both sides, had each had their own NICU babies. They were there for us! They lifted us up, they cared for our child at home, they carried us those first few days. Once it had sunk in, and we had gotten through the shock, we were able to be there for eachother, and for Caffrey. When one of us was suffering and hurting, it seemed like the other was able to hold it together, be strong, and make those decisions that needed to be made. We are a stronger couple because of this experience, although painful, we know without a doubt the other will be there to pick us up when it seems like you just cannot go on.
How did you balance the needs of your family and yourself while still allowing room for coping?
This was very challenging. Unlike, with the birth of our first child, the world did not stop, when Caffrey was born. We had this tiny two-year-old at home, whose world completely changed! We were able to stay in the hospital an extra night before being discharged, and that helped us get through the hardest days. Once I was discharged, it was a whole new round of emotions and struggles. As much as we wanted to be next to Caffrey 24 hours a day, we couldn’t. Chris and I split up our time spent at home and in the NICU, as often as we could so that one parent was in both places. But, we also have two amazing Mom’s who switched off daily, taking care of our little girl! They took care of us all. They had sleepovers, they fed us, they cleaned for us, they wiped our tears, they held us up! We couldn’t have survived without our own Mom’s.
What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges)?
Keep going! It seems impossible. It seems like there is no way. Give yourself time, feel the feelings, feel the heartache. But also, push yourself. Take a shower! Even if it’s the only thing you can physically do that day. Then tomorrow, push a little further. You will be a stronger person for it, and you will be amazed at the things you can accomplish. I strongly believe life’s trials are meant to be felt. And the people we become are because of those challenges. Life is hard, but it’s meant to be happy!
What has this experience taught you about resilience?
I wear my emotions on my sleeve, and most people who know me know that. This experience made me strong! In times of my life where I’ve felt like I couldn’t do it, or I wasn’t good enough, this was not going to be one. I brought this baby into the world, and there was no way that I wasn’t going to be there to advocate for him every single step of the way! The mama bear in me truly came out during this experience, and I will never not protect my children.
What is something you wish others understood about having a baby in the NICU?
I have had plenty of friends and family members experience heartache when it comes to babies. I thought I understood, what they were going through. I tried! I had empathy for them, I sincerely did. But, I had no idea the pain I could feel, as I watched my own baby lay there knowing there was absolutely nothing I could do to save him. Be there for them to cry to, listen to them, don’t try to fix it! Let them share what they want to share, and then don’t pry. They need you to hold them up, and they just need to know you are there. Acknowledge them, and if they don’t respond, then don’t take it personal. This is uncharted waters for them too.
Update on your kids:
Caffrey will be SEVEN this August, although this experience feels like it was yesterday. It’s almost like there is a permanent scar on your heart, and when you talk about it, you can feel the exact spot, the exact pain just not quite as strong.
Caffrey is thriving! He’s still a tiny little man. We’ve barely been on the growth charts his entire life, but I always say, “someone has to be the 2%!” Last year, at his six year well visit, we actually graduated to the 10th percentile, and he is continuing to grow and grow! He is sweet, he is smart, he is athletic, I think he’s exactly who he was supposed to be. And when I see those tiny scars on his perfect little body, I am just so, so thankful he is here, and he is mine!
We have since added a third child to our family. A sweet and sassy little girl named Capri! We were slightly traumatized from Caffrey’s birth and needed quite a bit of healing before we even could think about a third child, so there is almost four years between them. However, she came and she is here and healthy! We are a happy family of five!