Why The Blog Has Been Neglected…

It’s been an entire month since my last post. I’ve been so neglectful with Down With Jax and it makes me sad. I wish I could tell you we’ve been so busy doing awesomely cool things that this just got put on the back burner. But here’s the real reason. We have been dealing with a baby who is not sleeping! Surprise Surprise.

When Jaxson got diagnosed with severe obstructive sleep apnea in the fall we were of course disappointed but also so happy to have an answer as to why he hasn’t been sleeping for over a year. Waking every 20-40 minutes every.single.night! When we first got Jaxson on CPAP it worked wonderfully, for 2 whole weeks…… It seemed like he got used to the pressures and each night became worse than the one before.

Before Christmas we subjected ourselves to another horrendous sleep study to see how the CPAP was working (or not working in his case). Over the holidays his sleeping became unbearable. We both found ourselves in tears some nights, in pure frustration and truthfully, anger. We hassled the sleep clinic on multiple occasions to have his study read. But each time we called for results the doctor still hadn’t looked at it.

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Finally we got the phone call mid late January telling us that the CPAP was doing little to nothing for Jaxson. Another result we were SO happy to hear because it confirmed our suspicions. We were told Jaxson requires BiPAP.

BiPAP stands for Bilevel Positive Airway Pressure. To simplify it, Jaxson requires much higher air pressures in his mask to keep his airway open. However, the pressures are so high that he would be unable to exhale against them. So BiPAP will trigger the high pressure to blow when he takes a breath in, as soon as he is done his breath the pressure drops down to a very low pressure to let him exhale. The machine is also set to blow the high pressure if his body forgets to take a breath, this will trigger him to take a breath. CPAP on the other hand is just one continuous pressure, not the 2. (If you are at all interested to know the pressures here they are. The CPAP was set to 6 cmH2Oย the BiPAP is set toย 14 cmH2O as the high pressure, andย 6 cmH2O for the low pressure)

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Within days of getting the results we headed back in to Vitalaire and traded in the CPAP machine for the BiPAP machine. We were told that the transition from CPAP to BiPAP will be a huge adjustment for him (even though the mask is the same and he wears his mask no problem). Well they were right…

This is when we were at our absolute whits end. We thought we had the final answer to his sleep issues and it seemed to create more. We reached our breaking point! Jaxson would settle and fall asleep easily on the BiPAP, but the high pressures would bug him enough for him to wake up within 40 minutes of going to bed. He would then lay there with his mask on, eyes wide open, refusing to close them, refusing to sleep. Every night, for hours on end this is how we spent our evenings. Around midnight we would finally get him settled for the night and then he would sleep ALL NIGHT LONG. Yes, ALL freaking night! our nights were so bitter sweet.

This lasted close to a month. An entire month of never having any alone time, or time to sit, time to relax, time to get school work or house projects done. Yes we slept at night, but this may have been worse than not sleeping. Unfortunately leaving a 22 month old with grabby hands alone, with his mask on and a long air hose tied to the mask was not an option. So we laid with him, we rocked him, we spooned him, we rubbed his back, played with his hair, we sang to him, we did it all. Every night for hours on end.

Finally we figured out the solution to this waking up and not sleeping issue. We pushed back his bedtime to an hour later. We tire him out, and I mean to the point of full on exhaustion before bed. He is now so tired that he is able to sleep through the first sleep cycle and stay asleep. He still cries when he can’t find his suckie or wants to be turned over (yes, this is the monster we have created since we started co-sleeping 6 months ago), but he stays asleep for the most part, ALL NIGHT LONG!

Soon we will start the transition of getting him back to his crib. I made him a swedish sleep nest so he feels comfortable and secure. He seems to really like it, and hopefully that will aid in the transition back to his own bed. I am still super apprehensive about having him alone in his crib with a long hose attached to him, but I am starting to feel better knowing he isn’t restless at night anymore.

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For the first time in over a year we are all finally getting sleep in this house, and it’s almost unbelievable. I’m sure the sleep saga isn’t over but for now we will take it

P.S. Did I mention the BiPAP machine is FULLY COVERED, where as the CPAP machine we would have had to pay out of pocket. YAY!!!

 

 

3 thoughts on “Why The Blog Has Been Neglected…

  1. Ouff no kidding you’ve not been blogging! I’m happy to hear the bpap is working better for you, and that it’s covered for costs. Poor little guy & moms! Sleep for little ones is rough on everyone under even the best circumstances, so I can imagine you’re completely exhausted after these added challenges. Xx

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  2. He looks so precious in that last photo all snuggled up. So glad you’ve found some answers for your sleep issues. I know firsthand how miserable it can be to work all of this out. I can’t even imagine having the complication of curious fingers and an intrusive mask. Great job on solving the puzzle!

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