The night we brought our three-day-old baby to the emergency room was the darkest night of our lives. Jacob and I sat together, crying, wondering what we did to cause this to our baby. The drive to the hospital was somber—Jacob and I both silently wiping our tears while we listened to Jace breathing (squeaking) away.
When we arrived at the emergency room of the children’s hospital, they instantly took us back into a room to keep Jace away from airborne illnesses. Our pediatrician had called the hospital to let them know that we would be arriving with a newborn.
By the time we got into a room, Jace had not eaten for almost seven hours. To be clear we were following instructions from the pediatrician—she had told us to stop feeding him until we got to the hospital, in case he was aspirating. The nurse laid him on the table and showed us his tracheal tug. He was having severe retractions, which means his chest was sinking in as he breathed.
I felt awful holding my sweet boy because I felt as though I was teasing him. He was obviously very hungry but he physically couldn’t eat without choking and sputtering. The nurse asked if I could show her just a glimpse of his struggle when eating so they could see what they were up against. I asked to pump first before trying to nurse him since he had not eaten for hours.
It was time for Jace to try to nurse one more time. It took one suck and he started choking to the point that I had to flip him over and pat his back. The nurse quickly replied, “Okay, no more—that’s all I needed!” We were immediately admitted back to the NICU.
The next few days were a bit blurry. Doctors were running test after test on Jace, who was now hooked up to wires, oxygen and IV’s all over again. The doctors thought that Jace may have had a vascular ring, which occurs when veins wrap themselves around the esophagus. Had this been the case, he would have needed an open heart type of surgery. Thankfully the imaging came back negative.
The NICU had eighty beds, but we were in the observation area because they were so full. Finally, after four or five days, Jace got his own room where we stayed for another twenty days. Sleeping on an uncomfortable couch, sharing a bathroom with strangers after having just had a baby, and all of the stress and worry was terrible. It was not a walk in the park. We were stressed out of our minds, but somehow holding it together.
There was fluid in Jace’s lungs but the doctors couldn’t tell if it was from inhaling milk or just being a brand new baby. An Occupational Therapist came to help with feedings, and soon after Jace had his first swallow study. During that study, we found out just how bad it was. Every time Jace swallowed, the liquid would go up into his nose and down into his lungs. We were sent out of the swallow study with instructions to stop oral feeding immediately.
Jace was given an NG tube since he was no longer allowed to eat by mouth. This was about a week after he was born. Jacob and I were standing over our little boy, just staring at him and loving on him. Trying to hold back tears while our little baby had even more tubes and wires hooked up to him.
It was almost like we were in a movie, things didn’t seem real. While standing there, we looked up and saw all of Jace’s doctors and a few nurses standing outside our room. Jacob and I looked at each other and prepared for the worst. We knew they were there for Jace, and we knew it wouldn’t be good.
May 5th, 2016 (my due date, oddly enough) was the day we found out that our one week old needed surgery in order to thrive and survive. One week later, Jacob and I stood in the OR hallway as we watched doctors and nurses roll our sweet two-week-old baby into the operating room.
As I walked down the hall into the waiting area for parents, uncontrollable tears came flooding. I had these awful thoughts that would come in and out as we sat there waiting. I was trying to prepare myself for the worst.
After almost an hour, Dr. Groblewski came in to give us some good news. All had gone well. Jace was intubated to help him breathe due to the medications they had given him. They had administered a muscle relaxant to help with the swelling due to the location of the surgery.
The first time I saw my baby out of surgery he seemed completely lifeless. He was hooked up to more tubes and wires. One directly down his throat and taped to the side of his mouth. My heart sunk. There are no words to describe the way I was feeling. It took everything in me to hold it together because, in all honesty, I wanted to fall on the floor and just sob.
Jace needed to be transferred back to his NICU room (his surgery was at the Children’s Hospital next door, which is attached by an underground tunnel). When we arrived back to his room, there was a team of nurses and doctors waiting to properly transfer Jace back to his NICU bed from his incubator. Soon after, a team of radiologists arrived with a mobile X-Ray machine to make sure his intubation tube was properly in place and hadn’t moved from being transferred.
That moment, seeing him out of the incubator and laying in his hospital bed, I could’ve died. Due to the medication, his body and muscles were so relaxed that he looked dead. His face was very swollen, and his skin was irritated from the tape they had put on while he was in surgery. He wasn’t responding to my touch or my voice.
A few hours later, he finally started to move and was trying to make noises. (Because he was intubated no sound was actually coming out.) I talked with him and he let out a little side smile which I caught on video. It was the sweetest moment and I was so glad I could capture it. To this day, I still watch it often.
The next twenty-four hours were long and tough. Once the morphine had worn off, Jace was in a lot of pain. It was difficult to comfort him. Even his pain medication was just taking the edge off slightly.
After a few days, our little boy began to perk up again and started to act more like himself. He slept a lot but it was good for his body to get the rest it needed to recover.
Dr. Groblewski came to check in on Jace with Dr. Chris, his surgical resident. They wanted to see how he was recovering and listen to his breathing. Overall, he was pleased and he explained to the nurses that he wanted to remove the NG-tube as soon as possible.
There was one problem though—Jace was very tiny and had lost a significant amount of weight. The head NICU doctor wanted to “fatten him up” before he would sign off on taking out the NG-tube.
We repeated the same routine every three hours, every single day to make sure Jace was growing and getting better. We took his temperature, changed his diaper, and warmed up my milk so it could be fed through the NG-tube. Every diaper had to be weighed to make sure he was eating enough. In addition to all of this, Jace was weighed twice a day—morning and night.
One day, while changing Jace’s diaper and onesie, the nurse and I turned our backs for a moment to weigh his diaper. When I walked back over to his bed I gasped. Looking down, I saw that Jace had pulled his feeding tube right out! It was still attached to his face, but the end that was supposed to be in his stomach was now laying next to him on the bed.
Doctor G was called in to make sure everything was fine. Instead of placing another NG tube, the doctors all agreed that Jace was ready to try oral feedings again. It didn’t happen overnight but every day was a new day and we were learning how Jace ate.
He had a lot of trouble with his sucking, but once he and I started to bond a bit more, he began to pace himself better. He understood when he needed a break, and would unlatch and put his head back so he wouldn’t choke as much.
The next Monday, after 25 days in the NICU, the doctors were hesitant but excited to send us home. Of course, we were given many rules and stipulations before we were sent off. In order for us to leave, we had to have a home nurse—Nurse Sharon—come to our house a few times a week. This was to make sure Jace was gaining the proper amount of weight and to check on his lungs. (Since he was at an increased risk of aspiration.)
Fast forward four months. Lots of getting used to Jace’s noises and awkward feeding positions. There were many calls to the nurse, and I was constantly feeding Jace almost every hour. The doctors had told me that I needed to feed him whenever he was hungry, and he was hungry more than the average baby due to his breathing. It was lots of work for him. When he nursed he would sweat because he was working so hard. It was difficult, but it was our “normal.”
We saw Jace’s E.N.T almost every two weeks (or more if we called him for anything, which happened many times.) He wanted to continue to keep a close eye on him. Appointment after appointment, Dr. G would explain how Jace’s Laryngomalacia was not “textbook.” He was puzzled and couldn’t figure out why Jace was still so loud and struggled as much as he did.
One day when Nurse Sharon was over, I was showing her how Jace had been practicing his tummy time (which was very limited). He was only on his belly for about a minute—it may have been shorter— but when I flipped him back over his lips were blue. Nurse Sharon pointed it out, confirming what I thought I had seen. She told me that I needed to call Doctor Groblewski right away. I called as soon as she left, and they wanted to see Jace immediately.
Going into that appointment, Jacob and I knew in the back of our minds that it was very possible that Jace would need another surgery. We left that appointment feeling defeated. The odds of a child with Laryngomalacia needing two surgeries before six months old was only three percent.
For Jace, the “one and done” phrase was not in his favor. We were confused, angry, sad and just overwhelmed. He was scheduled right then and there for his second surgery. The surgery date happened to fall on the day after our third wedding anniversary. We celebrated quietly at home and enjoyed just being together as a family. We tried to go to bed early that night since we had to get up early the next morning.
I cried myself to sleep as Jace slept right in between us that night. I wanted to love and snuggle on him as much as possible. I laid there sharing my fears with Jacob as tears ran down my face. I kissed Jace and rubbed his precious little face with my hand, telling him how much he was loved. We laid there and prayed together, cried together and held each other tight.
The morning turned out easier than I thought, even though we didn’t get much sleep. Jace couldn’t eat for four hours before his surgery, which meant I couldn’t nurse him after 3 am. I thought that he would be miserable but honestly, Jace was (and still is!) the most content baby even with all his struggles. He slept the entire way to the hospital and he even stayed asleep when they checked him in. He was so happy and content in the waiting area—he was all smiles and laughs. His smile was contagious and helped to lessen our anxiety at least for a few hours!
After over an hour of waiting, we were finally allowed to go back and see him. He had his own room in the PICU for recovery. When we went into the room he was screaming his head off. This was very unexpected since I had thought that he’d be sleeping like the last time. He was on heavy medication but he was just very ticked that he was sore, and some kids don’t wake up well from anesthesia.
We spent one night in the PICU and it was very rough. Jace was extremely uncomfortable, and Jacob and I were exhausted. We tried to catch some sleep in chairs on either side of Jace’s bed, which was not an easy feat. Parents and children were yelling, crying and screaming in the rooms next to us. It was awful.
The next day we were discharged. Nurse Sharon was still scheduled to come to our house and continue checking Jace’s growth. We’d have to continue keeping a close eye on him in the weeks that followed.
In the months that followed, Jace always seemed to just maintain his weight. He never gained a ton and was always below the lowest lines of the growth chart. His pediatrician monitored him very carefully. At this point, Jace was almost two, just learning how to walk, was becoming more active. He still sounded very bad in his breathing. I had taken a video and sent it to his doctor and sure enough, they moved up his next appointment.
In February of 2018, we were told that Jace needed a third surgery. This time, in addition to having his third supraglottoplasty, his doctors wanted to take out his tonsils and perform a partial adenoid removal.
Our hospital stay was a lot more pleasant the third time around. All of the nurses worked hard to make sure Jace was as comfortable as possible. They loved on him and offered him popsicles for breakfast, lunch, and dinner. I mean, what kid would say no to a pop? He didn’t have much of an appetite due to the pain and swelling in his throat. He only ate one whole pop—the rest he took a few licks and was done. Now that Jace was older I was terrified. I knew it was going to be a rough recovery, and it was the worst.
We only stayed in the hospital for two days. When they discharged us, we had a two-hour car ride home. About halfway through, it was time for pain medication and he was trapped in his car seat. It was not a good time. We made it home, but the next three weeks were rocky. Round the clock pain medication, crying and breaking down due to his pain, not eating or drinking much of anything, and calls to the nurse to make sure he wasn’t getting dehydrated. I was a very nervous mom.
After about two months, once his body had fully healed from his surgery, we started to see some improvements in Jace’s breathing and speech. It was reassuring to know that his three surgeries had helped. We decided to take a family trip to Disney World to relax a bit and let Jace have a little fun. He loved meeting Mickey Mouse, and he still talks about it all the time.
It’s now been seven months and Jace is doing better than ever! He is such a happy and sweet little boy. He still struggles significantly, especially when he is sick. His breathing is much louder and labored than other children his age. He still sees doctors and specialist but not as frequently, which is a nice break for us all!
One of my worst fears for Jace is other children making comments to him. This happens regularly. Even though it’s like daggers to my mom heart, I try to make it a learning experience to educate others and to teach Jace to respond correctly. In the end, I believe it will make him a stronger person.
Because your steadfast love is better than life, my lips will praise you.
Psalm 6:3
There is more to our journey with Laryngomalacia, but for now, I will stand on Psalm 6:3: “Because your steadfast love is better than life, my lips will praise you.”
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