So I wrote this post back in February, then life happened and I never shared it. Many things regarding Jax’s condition have changed (yes, he still has it), but I still wanted to share this story.
We had an unexpected and scary experience when Jackson was five days old. As I previously wrote, we had a very traumatic day that resulted in a trip to the emergency room and a three day stay in the hospital. My hopes in sharing this story is to hopefully find other mothers who have had a similar experience, and to let them know they are not alone.
Jax was born on 11:56pm on Wednesday, October 21, 2015. On Monday, October 26, I was breastfeeding Jax before our first visit to his pediatrician. I noticed he stopped sucking and looked down to see what happened. I immediately saw that he was still and completely white. Panicking, I scooped him up to examine him. Jax’s lips were blue and his body was limp in my hands. I frantically tried patting his back and rubbing his cheeks to get him to start breathing again. It seemed like an eternity before he finally gasped for air. When he did, he seemed to be okay and quickly resumed his usual behavior. Jeff and I knew we were seeing the pediatrician in less than 30 minutes, and decided to ask him if we should be worried. [In hindsight, I don’t know why I didn’t just take Jax to the ER right then. I’ll save this for another post, but I suffered from PPD pretty badly, and wonder if that + lack of sleep + hearing other people say he was “fine” affected my decision.] When we talked to the pediatrician, he assured us that Jax’s episode was 100% normal and that he was fine. He explained to us that all babies have irregular breathing patterns and that Jax probably “just forgot to breathe for a moment”. However, around 6pm that night, Jax did it again. This time I knew that this was definitely not “normal.” I called the pediatrician’s after-hours number and spoke to the nurse of another pediatrician in the same practice as ours. She also brushed it off and said we “could go to the ER for peace of mind” if we really wanted to. At this point I didn’t know what to do. The pediatrician and a nurse said not to worry, but seeing my limp newborn son in my arms twice in one day was absolutely terrifying. I decided to call my mom and see what she thought we should do. She suggested calling my OB, and thank God I did. My OB immediately said we needed to go to the ER. Jeff and I packed our diaper bag and headed to the hospital with Jax and my mom.
I felt as if my heart was going to beat out of my chest when we pulled up to the emergency room. There were dozens of people in the waiting room, and I felt very uneasy about exposing my five-day-old baby to that environment. I quickly went to the nurse’s station and told them that Jax was only five-days-old and that he stopped breathing twice that day. They were so sweet and helpful, and within minutes, rushed us to a private room and promptly began examining him.
The next few hours were terrible. I was overwhelmed as various nurses came in and out of the room and asking me a million questions.
“How long was he not breathing?”
I don’t know…when your child isn’t breathing it seems like a lifetime! But it could’ve just been a few seconds…
“What was his behavior after he started breathing again?”
I don’t know…kind of out of it, but then normal again…but what is “normal” for a baby I’ve only known for five days?
I felt like a terrible mother for not answering the questions very well. I beat myself up about not knowing just how long he wasn’t breathing. I felt helpless, scared, and exhausted. My body was still in major recovery mode from giving birth only days before and I was also insanely engorged from my milk just coming in and not being able to breastfeed successfully.
The worst part about those first couple of hours was watching several nurses try to get a port in his teeny tiny veins. For those of you that know me, you know that I faint when I see/hear/think about anything related to blood. They tried and tried and tried again, and just could not get a needle to stick. By this point I couldn’t take it anymore. Jax was hysterically crying and I felt as if the room was spinning and my legs were going to give out. I finally had to step into the hall of the ER because I had reached my breaking point. I watched more nurses pile into the small room to administer an EKG, chest X-ray, and physical exam on Jax. I tried telling myself that Jax needed me to be strong for him, and after about 30 minutes, I was able to go back into the room. When I walked back in, Jeff was holding Jax on the hospital bed and rocking him to sleep. I noticed a nurse must’ve finally been able to place his port because his arm and hand were splinted and taped.
After the initial tests, our hospital room was finally ready. By this point it was around midnight, and we were all delirious. The nurses hooked Jax up to more machines and were monitoring his vitals-heart rate and oxygen levels primarily. Every time his heart rate or oxygen levels dropped, the monitor would beep like crazy and send me into panic mode. I was so overwhelmed that I asked my mom to stay in the hospital room with Jeff and me for the night. My mom and I were literally up all night staring at the monitor making sure the readings were ok. Unfortunately, it wasn’t until the last day that the doctor at the hospital informed us that the readings weren’t very accurate on babies because they are so small and wiggly. I was kind of annoyed that they didn’t tell us sooner because if they had, maybe we would’ve gotten a few hours of sleep.
After monitoring Jax for two and a half days, they performed a barium swallow study. This study is an “X-ray of the upper GI tract, specifically the pharynx (back of mouth and throat) and the esophagus (a hollow tube of muscle extending from below the tongue to the stomach). The pharynx and esophagus are made visible on X-ray film by a liquid suspension called barium sulfate (barium). Barium highlights certain areas in the body to create a clearer picture.” During this study, they discovered that Jax has a swallowing disorder called “dysphagia.” This means he is not able to safely swallow liquids because they enter his lungs. At just a few days old, Jax was not quite getting the whole “suck, swallow, breathe” routine down. The study showed that Jax was aspirating more frequently when he swallowed thin liquids. The hospital used four categories of liquids, all at different consistencies for this test:
-Breast milk consistency (thinnest)
-Honey consistency (thickest)
On the thinnest liquid, we could actually see the fluid snaking and going down the wrong pipe and into Jax’s lungs. This also happened on the “formula” consistency but not as often. On the “nectar” consistency, Jax was finally able to swallow safely.
So what does this mean for Jax?
He can no longer breastfeed. Hence the reason I rave about my breast pump in my “Newborn Favorites” post. Instead of directly breastfeeding him, I have to pump, then add rice cereal to the expressed breastmilk to thicken it. The thickening helps prevent him from choking and prevents the fluids from entering his lungs. We also attend weekly outpatient swallowing/feeding therapy which helps us learn how to manage his condition. Once he’s ready to take a bottle, we have learned a specific method of feeding him which consists of holding him at an angle on his side. We also have to “pace” him every 5-8 sucks to remind him to breathe. Unfortunately the enzymes in breastmilk quickly breakdown the rice cereal. Because of this, we can only feed him about 2 ounces at a time in order to help keep the milk thick enough. It’s frustrating having to break up his bottles like that because sometimes when he’s super hungry, he will have a meltdown when we are trying to hastily prepare the next bottle. After he has finished eating, we have to then hold him upright for an hour to make sure nothing comes back up.
We really like using Earth’s Best Organic, Whole Grain Rice Cereal because it’s really fine, making it easier to mix with the milk.
It’s been a very stressful few months filled with lots of trial and error. It’s been hard on both our marriage and on us as individuals. I have learned so much about myself throughout these last few months, and have gone from a terrified, sleep deprived, depressed new mom, to a much more confident and somewhat rested new mom! I’m so thankful for every second I have with Jax, and feel blessed to be his mother. He has changed our lives for the better and shown me a love I couldn’t possibly imagine.