Trigger warning (fragile medical child)
It happened again. For the third time in two weeks I thought my daughter was going to die in my arms.
Two weeks ago Evie had a desat. It was late when we got back from Cork and she had some Weetabix for dinner. We brought her upstairs to get ready for bed but being off the oxygen was too much for her. She started to cry but quickly the cries turned to gasps and her colour went the most horrendous purple.
He was already turning on his heel, but I firmly told Ross to run and get the emergency oxygen and mask from downstairs as I clutched our now writhing, and rigid daughter. I ran after him and met him at the top of the stairs. Instinctively I fell to my knees and as he cranked the dial up to 15 litres, I grasped the mask and held it against Evie’s tiny face. All I could think was “this cannot be the way we lose her”.
I could feel the weight of Ross pressing into me, turning all three of is into one. She started to come back to us and within minutes she was back to herself, chatting and looking at us as if nothing had happened.
The second time, a week later it was after her evening nap. For some reason when I took her CPAP mask off, she started to cry. Again, the cries turned to gasps and her body went from limp to rigid. I ran, I don’t remember getting down the stairs. I don’t remember my bump being there. I sunk to the floor where her emergency mask was and thrust it into her face but it wasn’t enough this time.
I shouted for Ross who came running from his office. It’s so difficult to arrive into and emergency situation and not know what’s needed next. I yelled that we needed to get her on her CPAP mask; he was up the stairs and back down in a few seconds, machine on and mask to her face. Again, within moments she was back to us. We carried on our day as if everything was completely fine. But those episodes don’t leave you, the weight of each one heavier than the last.
I don’t remember when we merged to become one person working together to save our daughter, once again. The night before her cardiology appointment, at bedtime I looked over and asked him if she was okay; he replied panicked “she’s not okay, she’s not okay”. One minute Ross was holding Evie and the next I was kneeling at our bed with one hand under her head and the other pressing her CPAP mask onto her face, staring into her panicked glazed eyes willing her to come back to me.
I can’t get her desperate expression out of my mind. She was terrified. So was I.
Sometimes I feel like I don’t have a body, just a head and two arms doing the work. Sometimes it‘s like I’m drowning but no one would be able to tell. Clearly and firmly telling Ross commands and working methodically through the steps to save her, but kicking like fuck under the water trying not to let us all go under.
After Evie was settled again, Ross leaned into me and said “I’m so sorry I left you alone after the other times, I didn’t know it felt like this”. He was the one holding Evie this time when it happened, the other times it was me. I want to take that feeling away from him. The gasping and rigidity and writhing, no parent should ever feel their child like that in their arms. It stays with you.
Evie can’t die like that. We can’t let her. She’s worth so much more than that. I’ll never get her panicked face out of my mind, desperately trying to tell me to help her with her eyes alone. Her body reacts automatically to the desaturation but her eyes speak her reality and it’s fucking scary. The desperate look is fleeting as she starts to come back to us but it’s etched in my mind like a constant flash back reminder of how close we were to losing her again.
We can’t let her die scared, or panicked. She needs to be comfortable and safe; she needs to know it’s okay to go and we’re here with her. It can’t be an emergency, she can’t be scared. Her fragility is painfully hard to accept sometimes, but in the same breath her strength is something I can’t wrap my head around most of the time. Sure, she has supports and medication and machines keeping her alive, but her joy for life and her love for us and ours for her definitely has a big part to play.
This is the worst she’s reacted to a desat. This was the time I really and truly thought we were going to lose her. I don’t think I’ll ever fully understand how she is as strong as she is. She recovers and suddenly Ross and I collapse from the gravity of it. We’re shaking, shocked, drained, holding each other, holding Evie, and she’s smiling chatting and ever so delicately touching our troubled faces. We save her but she most certainly saves us in the aftermath.
I can see so clearly in my mind, Ross kneeling while I hold Evie on my lap after she’s recovered. He’s leaning towards her little hooded head and masked face and she’s reaching out with her tiny hand to gently touch his nose and moustache. His hand is huge on her little arm, her yellow hooded head bobbing with the weight of the mask.
Her mask has never been something I’ve disliked. It saved her life last Christmas, and she welcomes it every night. There was a while where I wondered if we could wean her off it and have one less machine. She had a few nights without it but as the months went by it became clear that she will likely always need it. It gives her relief, a break from breathing and working hard all day.
The plastic rim is bulky and hard against my face but I know my chick is in there breathing so it feels comforting more than anything. The outlet valve where the air is pushed out is always cool and refreshing, especially after a scary desat with all the adrenaline pumping.
It’s heavy and awkward but that doesn’t bother her, when she’s being held upright she still makes the effort to sit up and look at us, touch our faces, chat and make us laugh. I love her so much it hurts; she loves us so much too – I know we are her safe space.
Her presence and energy are healing, and it’s as if she knows who needs it the most. I needed a distraction, so I went downstairs to get a few things ready, along with a “just in case overnight bag” that would hopefully stay in the car. I came back up to Evie in the bed with Ross.
Her nappy had leaked, and she was unsettled so Ross had snuggled her in to him. She was tucked under the covers with her little masked head poking out, facing him and her little sleepy outstretched hand so carefully tracing his lips. I sat in beside them and she stayed turned towards him, sending him her lovely little positive vibes.
The next day we drove the 3 hours to Dublin to bring Evie to her last cardiology appointment of the year. The trauma from last year rippled at the surface for the whole morning. Evie was admitted on Dec 22nd 2021 with rhino-enterovirus and had a 3 week stay in PICU on breathing support. She was so unstable that we had said goodbye to her at one point. Thankfully, we were able to bring her home again in January on comfort care; we expected her to die peacefully at home.
Fast forward to this year and we have had so much more time with Evie than anyone expected. I am eternally grateful for that but I don’t want to see her endure another highly uncertain hospital stay. Despite all of this and the events of the night before, I had this wave of positivity over me.
I had thought it might be to do with pregnancy hormones shifting or Ross and I yo-yoing (we tend to do this, one up and one down, but it works) as he’s been feeling the weight of it all more lately, but I really believe a part of it has to do with all the positive energy being sent to us. I maintained that calm throughout her clinic appointment. Having Ross by my side ensured that too.
We had anticipated Evie becoming distressed during the echocardiogram (heart scan) so we brought her CPAP with us and popped it on before the scan. We opted against having her weighed and having an ECG because anything extra would have been too much for her. She tolerated the echo enough for them to be able to get most of the imaging. She got upset at times but having her mask and some favourite cartoons, plus mama and dad, definitely saved the day.
Amazingly her heart structure and function was pretty much the same as it always had been, which is terrible, but in Evie terms that’s good news. The episodes she’d been having are related to her lung pressure. Her cardiologist called them pulmonary hypertension crisis episodes.
Evie’s pulmonary hypertension is transient, meaning the pressures in her lungs change all the time. When she becomes exhausted or distressed, that’s when these crisis episodes or desats happen.
We were given huge reassurance by her cardiologist that we have been doing the right thing, treating her symptoms and keeping her comfortable. She said we’ve “been playing a blinder” which honestly means so much coming from the main person involved in Evie’s medical care. We know we’re a great team and always do what we can to keep our little bird happy and safe but it’s nice to hear it from the top. We were also given scope to increase her diuretics if and when needed.
We are by no means out of the woods with Evie’s fragility, but having the support and encouragement from her cardiac team that we can go home and spend our first Christmas in our home together means more than words could ever say.