Recently, I put out a poll on social media to see who’d be interested in a blog post about our little man Jace. I realized that I often talk about Jace in my Instagram stories and on Facebook Live, but I’ve never really shared his story.
There is way too much to this story to cover in a single blog post, so this will be the first of at least three blog posts where I share Jace’s journey. To be honest, there is a lot that has happened, so please bear with me.
On Thursday, April 28, 2016 my husband Jacob and I welcomed our precious son Jace into the world. I have forever desired to be a mom, and on that day my dream became a reality—a day I will never forget, right alongside our wedding day.
I was exhausted, beyond excited, and full of just about every emotion one could possibly feel. You know when you are so excited or nervous about something that you feel like you either have to throw up or poop? Yup. That’s what I was feeling.
My pregnancy was nothing out of the ordinary. I was 39 weeks when my water broke while I was sleeping. (Before you say, “What!?”, I labored for three days at home before that happened.) I gained an average amount of weight, and Jace was an active little boy who loved to kick me in the ribs, and had the hiccups often.
When Jace was born the nurse told me his umbilical cord was very short (somewhere between 11 and 15 inches). They could not place him on me due to the length of it. He was placed on the bed and I saw him for the first time: gray, not breathing, and with nurses rubbing him vigorously to try to get him to cry. He finally let out the smallest sound—one I will never forget. The nurses all excitedly said, “There you go buddy, nice job!”
Jace was on my chest for about ten minutes before I had to be transferred to a different room to be stitched up. The room I had delivered in had a real bed that was low to the ground, as an option for women who want to try and have a more natural birth. Due to the severity of my tear, I had to be moved into another delivery room with a bed that could be raised up. Unfortunately, I missed an entire 53 minutes holding and loving on my little boy.
During that time my husband stayed behind in our delivery room, and was able to hold him and love on him. He could tell that something wasn’t right though. His breathing sounded odd. Every time he took a breath in his head would shake and he sounded like a dog’s squeaky toy. Jacob took a video of him because he knew something was off and wanted me to see it when I came back.
While I was gone, Jacob asked the nurse multiple times if Jace’s breathing was okay. Her response the first three times was, “Its normal for babies to have fluid in their lungs, and it sometimes can take them a little while to clear it.” After the fourth or fifth time, and almost an hour later, she called for a pediatric resident from the NICU to come and check on Jace, just in case. That’s when I returned back to my delivery room.
They placed Jace on my chest for another ten minutes (even though it felt like only two). The resident came in to check his nose, listen to his breathing, and make sure all of his air passages where clear. Everything appeared to be clear but his breathing did not seem right to her. She (I cannot remember her name!) was spot on. After her evaluation, she came over to Jacob and I and explained to us that she believed he had Laryngomalacia also known as a “floppy airway.” She explained to us that most babies “grow out of it” and they just sound a little funny when they breathe.
She then explained that they were going to have to take him to the NICU to be observed for a little while. When I asked how long, she told me about six hours. After he had walked our son down to the NICU, I sat there in my husbands arms trying to wrap my head around what had just happened. I was shaking. My body was still in shock after having just delivered, and now a million “what ifs” were running through my head.
My dream had always been to hold our baby with family visiting, laughing, loving on us, and adoring our sweet little boy. Now that was so far off. Our family did come and visit, but nobody really knew what to say. We were baby-less.
I was a little naive thinking that Jace would be back with us once we arrived at our postpartum room. I really had no idea. My husband rolled me down to the NICU to visit our sweet baby, and they brought us over to his bed. I was not prepared to see our little boy hooked up with IV’s and wires. The nurse started to explain everything to us, and tears began to flow down my face. I just broke down. I asked her, “Is he going to be okay?” She reassured me that he was going to be fine, and that he was in the best place possible.
Six hours of observation turned into multiple days in the NICU. For the next two days, Jace spent hours, so many hours, away from us. I got up out of my bed and left my room as much as my body could possibly handle.
The next day, I was begging for IV fluids because I had pushed my body a little too much. The amount of stress and always wanting to be near our baby boy took a toll on me. The NICU was on the opposite side on the hospital, so I had to be brought over by a wheelchair. I was white as a ghost and felt faintish, but nothing was going to keep me from loving on my baby.
After many tests, oxygen, and having his airway scoped we found out that Jace’s Laryngomalacia was very severe. Still not fully understanding what was going on, we continued to be naive about him, thinking he was going to be fine.
Eventually, everything did seem to be turning around for the better. We were in high hopes. After two days of observation, the NICU head doctor told us that Jace could sleep upstairs in our postpartum room. His oxygen levels were steady and he was showing great signs.
That night, none of us really slept. I was nursing Jace but he seemed to not be able to get a good latch and his suction wasn’t great. Again, I am a first time mom thinking that this must be normal for newborn babies.
We were scheduled to be discharged on Saturday, April 30th. In order for us to go home, though, Jace had to be scoped once more by Doctor Groblewski, his ENT. He was the nicest, sweetest man, but I was dreading the scope. The first time he was scoped was in the NICU, and I cried and cringed through the entire thing. Jace turned completely blue from being so angry and holding his breath.
After scoping him again, Dr. Groblewski sat down in a chair, made himself comfortable, and said, “Jace has severe Laryngomalacia. I am surprised he is doing as well as he is.” He sat there and explained everything to us, and then told us “I want you guys to be able to ask any questions you have.”
We learned that an average airway opens widely, but Jace’s was omega shaped with extra tissue around it. Every time he breathes in, the air passing through his larynx causes his “noisy breathing” and the extra tissue sinks in on itself causing his airway to close. Jace also has stage one subglottic stenosis, meaning his trachea is narrowed. An average trachea is shaped like a circle, but Jace’s is more oval shaped, which causes more difficulty for him.
Dr. Groblewski broke down some of the statistics for children with Laryngolmalaica. Ninety-four percent of children “grow out of it” on their own—meaning that as they grow their airway gets larger and it becomes easier to pass air through it. The remaining six percent of children, however, need surgery to repair their airway, which normally occurs after they are six months or older.
He then explained to us what to look for when we go home. If Jace choked or turned blue around his mouth, he told us to flip him over and just tap his back. If Jace held his breath and started to turn blue, we were to blow in his face to startle him to breathe. And lastly, if any of these things happened, we were to call immediately.
Having a love for children and a background in early childhood education, I thought that I knew it all. I thought that when I had my own children I’d be all set and wouldn’t need any advice. I was stupid and naive to think that. As I sat in my hospital room sobbing, I had no idea what to do. I was questioning whether I was even capable of taking care of this tiny human that had all of these health issues.
That was a rough afternoon. We should’ve been so happy that we were going home, but instead we were terrified. Jacob and I lost it. We were far from strong, and we were unsure—and beyond nervous—about our little boy.
We were finally discharged around four in the afternoon. I cried on the way home, and I cried when I got home. Over the next 24 hours, we were trying to get acclimated in our own home. No nurses to distract us, or take Jace’s vitals. No doctors scoping him, and no oxygen monitors. It was just the three of us.
Jacob and I didn’t sleep much that night. Jace was elevated in his bassinet, and squeaking away all night. The next day, we tried to get into a normal routine. Laundry was going, Jacob was making food for me, and we were holding and loving on our boy. I was nursing him about every two hours and things seemed to go as smoothly as they could.
Around three in the afternoon things took a turn for the worse. I noticed my milk had come in and Jace was not handling things as well as he previously was. He was literally drowning. Every time he would take one sip he would gag, choke and turn blue around his mouth.
I called Jacob upstairs. Jace was becoming lethargic and not wanting to eat even though he hadn’t eaten for hours. We both knew that something was very wrong. Jacob calmly said to me, “Babe, his breathing sounds wet.” I said to him, “What do you mean it sounds wet?” He said, “Like he inhaled milk while he was eating.”
We immediately called the pediatrician. (She already knew Jace’s diagnosis because she had visited him in the hospital.) She told us to try a bottle, then try feeding him with a syringe, and to hold him in different ways. He kept struggling, and each time it was getting worse and worse. Finally, she said in a somber tone, “You’re going to need to take him to the hospital”.
We quickly packed a bag, jumped in the car, and headed on our way. Neither of us had any time to wrap our head round the fact that we were taking our three day old infant to the emergency room.
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