Bringing Home Baby....On Oxygen Support
Writer/preemie mama Ashley and I met via social media when I stumbled across the most gorgeous little preemie, Hazel Emelie. Those big, bright eyes captured me immediately. Hazel had just been discharged from the NICU and Ashley & I connected immediately. Messaging each other every few weeks, sharing stories, giving each other advice. After reading one of her blog posts, "To the NICU Mom", I was hooked. Ashley is in the process of writing her first book, "Confessions of a NICU Mom", which will be out before the end of the year. I can hardly wait to read more from her! She's as authentic of a mother as they come, and her images always tell an incredible story. I am so appreciative that Ashley took the time to share part of her journey with us and excited to wish Hazel a very Happy 1st Birthday today! - Stephanie
If you would have told me a year and a half ago that bringing home the baby we were expecting would include a 175 day NICU stay, and an at home oxygen program I would have hit the floor. But, that was the reality of it.
Our sweet Hazel Emilie was born at 23 weeks + 3 days gestation with IUGR weighing less than a pound at just 420 grams (14 oz). In utero our lungs are among the last to develop, the alveoli within our lungs starts to develop around week 24 and so does surfactant - a compound which prevents the walls of the lungs from sticking to one another upon exhale. Therefore, it should have come as no surprise that Hazel would require so much respiratory support. It wasn't so much of a surprise but it never got easier. After time, the ventilators, the breathing tubes, the CPAP machines... none of it phased us much anymore. What once was a shocking image was normal in our world.
Then came discharge planning. We spent 175 days in the NICU which put us two months past Hazel's due date. Months prior we were still hopeful that by the time Hazel was considered full term or close to anyways, her lungs would have gotten stronger and by the time she came home she would be breathing without support. The reality changed when we started the plans to come home, the equipment orders went in, and we were trained in anything medically related to Hazel's care that we didn't already know.
The at home oxygen program came into our home and set us up with everything Hazel would need 2 days before she came home and then came the hard part - walking out the doors of the NICU on day 175. You would think bringing our baby home after so much anticipation would be exciting and it was, absolutely. But walking down the halls of the hospital, our 5 lb baby in her car seat with nasal prongs in her nose, her daddy carrying her, and myself carrying an oxygen cylinder and a pulse oximeter - both hooked up to our tiny baby... you can imagine the stares and the whispers from strangers and passerbys.
What I struggled with most was being tied to an oxygen cylinder 24 hours a day.
Hazel wanted to be held all the time, and fairly so after all she had been through. But that meant carrying Hazel in my arms, and an oxygen cylinder on my back. Going out meant having extra medical supplies in case of emergency. Getting out of the car meant 5 minutes of getting Hazel secured in her stroller and her cylinder and tubing secured as well. Morning routines consisted of a dozen meds and every other day it meant changing the adhesive on her poor, soft cheeks which almost certainly involved many tears from both Hazel and myself. Days consisted of checking the tank periodically to ensure no loss of pressure and checking the regulator to ensure the tank wasn't empty. It meant a constant, exhausting battle with Hazel to keep her prongs in and one frustrated baby girl who hated having her face touched because it always meant mom or dad was sticking those prongs back in her nose. It meant sp02 checks with her sat monitor to make sure she was getting adequate oxygen. Night time brought a whole new set of challenges... bed time meant she could only wear jammies with snaps to allow for the wires of her pulse oximeter connected to her foot to come out to the plug in. Nights meant I couldn't just pick Hazel up and pace the room while rocking her to sleep. I couldn't bring her downstairs with me to get a bottle without having to disconnect her pulse oximeter and grabbing her oxygen cylinder - thankfully my husband is just as involved in her care as I am and was able to take care of that for us, but I struggled with feeling stuck... unable to roam freely with my baby, always getting tangled up in tubes and wires. Nights brought occasional dips in her sats that would sound her alarm, waking us up. Her sats would always pop back up before I could even silence the alarm but the bell on her monitor woke us up more often than she did.
Home oxygen during a heat wave summer meant no camping, and no campfires. It meant no swimming and very few beach days. When the wildfires broke out and thick smoke filled the valley where we live, it meant staying indoors for weeks on end with our windows closed... and a summer cold that put Hazel back in the hospital admitted into pediatrics for a week with additional respiratory support meant the introduction of two diuretics to add to her medication schedule.
Home oxygen was exhausting. But, it also meant our baby was home. The stares and questions from strangers provided me with a unique opportunity to educate and bring awareness to the NICU and micro preemie babies. Oxygen support really was our "normal" and when Hazel came off her oxygen she didn't look like herself and I found myself missing her nasal prongs only for a moment. For weeks we caught ourselves stopping abruptly as we walked away with Hazel because we expected to have knocked over her oxygen since it wasn't in our hands. It took weeks to remember we were no longer tied to an oxygen cylinder.
Today, Hazel is 2 weeks away from her first birthday and about to go in for a PDA closure - a surgery which will close an open valve in her heart. This will only make her stronger, and though she was able to come off the oxygen support with it still open it will help her system to be strong, she will grow better and she will be one step closure to sending all her medical equipment back for good.