God has opened my eyes wider than ever before. Three days before Laylin’s two month old milestone, the thought of her dying entered my mind and I was beyond scared, desperate and weak. Nothing has ever brought me to my knees quicker or with such conviction than this experience.
Losing my children is my biggest fear. With some degree its always in the back of my mind as I try to protect them from the dangers of this world, keep them healthy and do my best everyday as their guardian. I have heard countless stories of people, acquaintances and even friends losing their children, but I never thought I would come close to anything like this. By the grace of God our Laylin is still with us and thriving more and more every day, but the freight of seeing her lifeless grey body in front of mine has left a forever impression on my heart of pure gratitude to our Creator for breathing life back in to her.
On Monday night, I just happened to wake at nearly midnight. We were at my parents house as my husband was away for the week for work. I had put both girls to sleep in my room for peace of mind. My oldest, Isla, was sleeping sound when I woke up, but Laylin seemed unsettled. I repositioned her in the co-sleeper and gave her a paci. When I did, I heard a gurgling sound in her throat. I quickly got her up and began walking the floor with her, gently patting her back. I woke my mom up and remember telling her that I felt like something was wrong with Laylin. We stayed up with her for five to ten minutes longer. We then went back downstairs to change her diaper. As we were changing her diaper, she began spitting up. I immediately rolled her onto her side, but some of the spit up had gone down her airways and she began to aspirate. I quickly sat her up and told my mom she wasn’t breathing. I then picked her up and began patting her back as she was clearly choking and could not get any air. She was panicked and I will never forget the look on her face, as if she was pleading for me to do something. Her body was becoming lifeless and turning grey. I told my mom to call 911. We were doing anything and everything we could to get her to cry because we knew if she was crying…she was breathing. My parents and I were both scared beyond imaginable and praying to God for her to be okay at the same time. Her mouth was closed tightly shut and she began to shake all over as if she was having a seizure. I pried her mouth open with the tip of my finger and this seemed to help a little bit. I stripped all of her clothes off and we laid her down on the kitchen floor preparing to start full blown CPR. Just as we did, she let out the faintest cry. It’s a sound I will never forget. It seemed so weak, but after 30-45 seconds of not breathing, I knew she was finally starting to get air. I kept her on her side and continued to stimulate her by rubbing her feet. By this point she seemed very lethargic and sleepy. The first respondents arrived and were able to give her oxygen in the ambulance. This seemed to help a lot. I called my husband from the ambulance and we left for the hospital.
My parents live in a small town in the mountains, so unfortunately, the hospital was not equipped to assess the situation further. They helped keep Laylin stable and we were transported to the nearest Children’s hospital which was two hours away. It was a rough ride to the hospital, but I was so utterly relieved she was still with us. Once we arrived at Brenner’s Children’s hospital in Winston-Salem we were quickly taken to a room and assessed by two doctors. We stayed at the hospital for over 24 hours with no further choking episodes like the one that brought us there. We saw nearly 10 doctors during our stay there and their final diagnosis was a choking event, or ALTE (Apparent Life Threatening Event). Since Laylin had had no other issues with breathing in over 24 hours (so we thought), all of her vitals and tests such as EKG looked great, I felt okay with their diagnosis and was ready for us to be back home. There were times when she still seemed unsettled during the night of our stay and I had planned to follow up with our pediatrician the next day to discuss reflux and the ALTE.
We got home from the hospital on Wednesday, and were home 4 hours when she had another choking event. I called our Pediatrician’s office and spoke to an RN as it was past office hours. She stayed on the phone with me as I helped Laylin work through the first episode. Laylin was awake and crying on and off, so I knew she was breathing. By no means were any of these choking events as bad as the first one that lead us on this journey, but anytime your baby is struggling to breath, it’s a serious issue. Luckily, both grandmas were at my house when the third one happened and we headed back to the hospital. From CMC Pineville, we were transported in an ambulance to Levine Children’s Hospital.
At Levine, Laylin went through several more tests including a multi-channel PH probe test which gave us a lot of answers…finally. My husband had returned in time for this test and I was so thankful as it was probably the roughest on Laylin. A probe was placed through her nose and into her esophagus. After 24 hours, we were able to see what was causing her to choke, how much oxygen she was breathing in and if she was actually stopping breathing. We learned she has been suffering from obstructive apnea, in other words air pauses or decreases during breathing while she’s asleep because her airway has become narrowed, blocked, or floppy. Most likely, it is becoming blocked from the reflux. I can count on one hand the amount of times she has actually spit up since birth, the first episode being one of those times, but it doesn’t mean she’s not having reflux. The test also showed us that she has silent reflux. Silent reflux is where the spit up flows back into the esophagus, but isn’t forced out. Laylin had been swallowing it back down or if it didn’t come up far enough to be swallowed, the stomach acid was just sitting in her esophagus causing a lot of irritation. Silent reflux has the potential to cause more damage than just reflux because it can sit in the esophagus longer than if it actually came out. And in addition to these two diagnosis, we also learned she was having periodic breathing episodes in her sleep where she was pausing breathing for up to 10 seconds. Periodic breathing and apnea are not the same thing. Apnea occurs when breathing stops for at least 20 seconds. The baby may become limp. There may be a change in skin color such as blue or grey like we experienced and a drop in heart rate before the baby starts breathing normally again. Sometimes the baby must be stimulated to restart breathing. This is a more serious condition. None of this happens with periodic breathing. All of these conditions are most commonly found in premature babies, which Laylin is not, but her little system just needs more time to mature. We finally had all the answers we were searching for… we thought. After we received these diagnosis, we got a refresher in CPR and also received monitor training. We left the hospital again after nearly 36 hours of observation with a prescription for Prevacid for the reflux and a cardio-respiratory monitor so that we could monitor our little babe 24/7.
We weren’t home even four hours this time when she had two more alarming choking events. After another call to our pediatrician, we headed back to the hospital and was swiftly admitted. We spent the next three days under observation. In addition to the Prevacid, she was also put on Erythromycin to help encourage her tummy to empty quicker. After no more choking events during those three days, we headed home once again. Laylin still wasn’t acting herself and I could tell during our night at home that something was still hurting her. We went to her pediatrician the next day and she was also put on Hyoscyamine to help her work through the stomach cramps she had been having. This has made the biggest difference for her and we can tell she is starting to feel better.
We got the data from our first reading from the apnea clinic today and from our discharge to the 16th of October, she has had three more episodes during her sleep. Each time the monitor alarms, I feel my heart rate soar, but I am so grateful for this amazing technology. We stimulate her each time it alarms to make sure she is breathing. At this point, we aren’t sure how long she will have to be on medication or be monitored, we are just so humbled by this event and grateful that it happened. The thought that this had been going on all along and we didn’t know it is so scary.
It may seem odd to be grateful for 3 ambulance rides and hospital stays, not to mention being the most frightened I’ve ever been, but if this hadn’t have happened, there is a chance Laylin might not be here with us today. The first choking event, revealed so much more that was going on with her breathing that we would have never known if the test hadn’t have been conducted. God’s plan is so great. I am humbled beyond explanation and have been shown how blessed I am to be able to be a mother to two healthy children. He breathed life back into our baby and showed me once again how precious every single moment of our life is.
For the Spirit of God has made me, and the breath of the Almighty gives me life. Job 33:4