Blair's Hospital Sleepover Party

This has been a rough week for all of us here in the McClanahan house, as much of our week was spent at Vanderbilt Children's Hospital in Nashville with little Blair. She's doing well now, we are back home recovering and we are moving forward with a treatment plan for silent reflux and laryngomalacia. I was contemplating not doing a blog post about the whole ordeal, but since this is a place for me to document our lives, I should include the tough stuff as well as the happier moments.

Sunday and Monday nights, Mike and I noticed that Blair had begun making a very loud, high pitched chirp in her sleep, but it didn't last very long so we chalked it up to her weird little noises. Tuesday night she went to bed around 8:30 and spent the ENTIRE night doing the chirp, but we noticed it was also followed by a period of not breathing for about 10-15 seconds. She would gasp for air and breath normally for a minute and then chirp, not breath, and gasp again. The pattern continued for her full night of sleep (9.5 hours). I knew that periods of lapsed breathing is normal in infants so I wasn't panicking quite as much as a FTM probably should have, but the noise was unsettling. I recorded it on my phone so I could let the pediatrician hear it. Mike and I barely got any sleep that night.

The next morning I watched her do the breathing pattern while it was light enough to see her face and she turned blue around her mouth and on her eyelids during the periods of not breathing. Her chest was rising during that time though, like she was trying to pull air into her lungs, but the air was getting stuck in her airway.  So Wednesday I called her pediatrician, who told us to go straight to the ER. We took off for Columbia, where she was born, assuming they would just tell us we were being silly first-time parents and everything was fine.

They checked B's vitals and asked us a million questions. No fever, no symptoms of being sick, no change in behavior or sleep. The ER doctor ordered a chest X-ray and they tested her for RSV and the flu. The X-ray was clear, no fluid in her lungs and the tests were negative. The ER doctor said he was concerned about the way she had turned blue and said she could have a heart problem. He explained that any structural problems with the heart could present at around 6 weeks of age in babies, but that the hospital did not have the ability to do further testing on such a tiny patient, so they were going to transfer us to Vanderbilt Children's Hospital for more specialized attention. Cue heart-sinking panic.

A bit unsure about being strapped to the gurney to go into the ambulance

Blair and I were whisked away to Nashville in an ambulance to the VCH ER and Mike followed in our car. Blair thoroughly enjoyed the ride, and slept the whole time, even as the EMT and I put stickers on her legs, arms, and chest for en-route monitoring. We arrived at the ER where I answered another million questions, played the recording for a few respiratory therapists and the doctors. Everyone was a bit perplexed by her issue, especially the loud chirping noise, but it was agreed that her symptoms did not suggest a heart issue.

Ambulance rides are really good for sleeping. Weirdo!

She hadn't displayed any problems on the monitoring for a few hours so the ER doctor said they were thinking about discharging us. It was nearly midnight, so I asked to stay just for a little while longer to see if I could recreate the situation where she had done the strange breathing - in a swaddle, at night, during sleep time. Once I got her settled down, it only took 20 minutes before the chirping, stop breathing, gasping pattern began. Blair stopped breathing for a full 20 seconds, which sent her oxygen levels down into the low 80s, dragging her heart rate/pulse down with it. The respiratory therapists witnessed it on her monitor and came running in. We won a one-way trip to an overnight stay.

The doctors then told us that the game had changed and protocol called for a full infections panel, which includes bloodwork, a CT scan and a spinal tap. It was absolutely terrifying. I asked how necessary the spinal tap was, as she hadn't shown any sign of infection or illness and didn't have a fever. The respiratory therapists said they would suggest holding off on it for now to see what the bloodwork and CT scan showed. Blair behaved wonderfully during the CT scan, with Mike and I by her side shushing her and keeping her calm.

However, then two nurses came in the room to place Blair's IV and draw blood. I cannot even describe the heartbreak and sickening feeling in my stomach as I held her head while she screamed. I tried to be strong for her but I shed quite a few tears myself. The nurse failed to get the needle in her little hand, and then stuck her in the arm twice before finally getting the IV in. They drew a bunch of blood and then pumped her full of saline in preparation for the spinal, if indeed we needed it.

Lounging with her belly out in the hospital crib

We were supposed to move up to another floor, but the hospital was full. We were shuffled instead to an observation room, where there was a bed for us to get a bit of rest. I got 3 hours of sleep on Wednesday night and I don't think Mike got much more than that. Thursday morning we were visited by the pedi team, who said they were still unsure what the problem was and that they wanted an Ear Nose and Throat specialist to evaluate her. Despite the fact that Blair's white blood count was slightly elevated, pediatrician was still willing to hold off on the spinal to wait for conclusive results on her blood cultures.

After the consult with the team, Mike left to head back to Clifton for a few hours to grab us a change of clothes and sign payroll checks (we couldn't let B be the reason 25 people don't get paid!). I finally got my hands on some food at noon - my first meal in 24 hours. While he was gone the ENT came in for an initial check and was also quite interested by Blair's funny chirp. He said they wanted to do a scope of her nose, throat and airway down to her voicebox/larynx to check for cysts or inflammation. If they didn't find anything on the scope, he said they would probably do a deeper scope, which requires anesthesia and an operating room.

I was then instructed to feed Blair for the last time before the scope, but wasn't given a time for when that would happen. She only took 2.5 ounces before refusing to eat any more and then fell into a deep sleep. Fast forward to 3.5 hours later and she's screaming her head off because I can't feed her, she's starving and the damn ENTs are stuck in a surgery they're not sure when they'll finish. I was sobbing, holding her in my arms trying to comfort her, while listening to the heart monitor beep like crazy because she was so upset. It was awful. I still tear up and feel guilty when I think about it. I'm her MAMA - the two things I'm supposed to be able to do are feed her and make everything okay. There were a lot of curse words tears in Observation Room 1 that afternoon.

Finally a nurse came in and said they were going to switch our room again, in preparation for the scope. Because the hospital was still full they were moving us up to the Pediatric ICU in the cardiac unit, where there was an empty room. The nurses there were absolutely AMAZING and they were a huge source of help and comfort for us. By this time it had been 4.5 hours since Blair ate and she was inconsolable. The ENTs showed up to do the scope and found inflammation on her larynx and extra, floppy tissue on her voice box. The ENT said he would file his report with the pedi team and they'd give us the final diagnosis. I finally fed Blair and she conked out for a well-deserved, snuggly nap.

All hooked up in our PICU room. Snuggled in her little nest!

One of the pediatrician team doctors came in that evening to give us the news that Blair has both Laryngomalacia and silent acid reflux. The reflux causes irritation and swelling in her throat, which makes it difficult to breath. Laryngomalacia, however, is the excess floppy tissue in her throat that causes her to have noisy breathing and, when the throat is irritated by reflux, can cause her to have difficulty breathing. Laryngomalacia generally corrects itself by 6 months as infants grow and their throat muscles strengthen. If not, it can be corrected with surgery, but that's still a way off. We will reevaluate with the ENT again in one month to check on her progress.

We were kept overnight again on Thursday so we could meet with a feeding specialist the next day to have her suck/swallow pattern evaluated as well. We attempted to administer Prilosec at two separate feedings, but she puked up her entire bottle the first time and couldn't even keep down just 1oz at the next. We waited a couple hours before trying a non-medicated feed and she chowed down on 4 ounces. Poor thing.

We each got 4 hours of sleep on Thursday night, bringing my total to 7 in 48 hours, on top of the terrible night of sleep on Tuesday. Needless to say, my ability to subsist on adrenaline alone has certainly increased since having a child! The nurse took Blair's blood again that night to check her white count. My mom arrived the next morning for moral support and to help us recover over the weekend. The feeding specialist stopped by mid-morning and said Blair was the poster child for suck-swallow and just suggested that we avoid placing her flat on her back to keep her reflux under control. All things considered, that's easy!

After Blair's white count came back as normal, we were finally discharged on Friday night and it felt wonderful to be home again. We missed sleeping in our own bed - hell, sleeping at the same TIME - so badly. I don't know how NICU/PICU moms handle it, they are truly the strongest women in the whole world.

Home. Sweet. Home.

Blair was absolutely fantastic the entire time - she shared smiles with every single doctor, nurse, specialist, janitor that came into our room. Everyone gushed over how beautiful she is (of course!) and they couldn't believe how advanced she is in her ability to make eye contact or follow moving people/objects. She has a few scabs and bruises from heel pricks, monitor stickers and the IV, but I think she fared better than I did - I don't think I'll ever forget her little screams. UGH. I have ALL the mommy guilt.

A big ol' smile for SnapChat haha

Anyway, I just wanted to post about our little adventure and, most importantly, say that Blair is doing okay. It could have been so much worse, we are just so happy and relieved that we got the diagnosis we did! I'm sure I'm forgetting something here, but my brain is still recovering. It's been a hell of a week.

We celebrated St. Paddy's Day tonight with a nice meal of corned beef, potatoes and carrots. It feels so good to be home and moving forward.

Happy Paddy's Day! (Thanks to Auntie Karagh for the shirt haha)

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