So, my old blog posts probably portrayed me as someone who was quite strong, dealt with the ‘prem’ thing quite well, and walked amongst hospitals and tiny babies confidently with no flashbacks and stress from our days in the NICU. Well, that was a bit of a farce… and that’s why I’ve been absent for a little while.
Yes, I did deal with it quite well (I think so anyway), and did manage to go into all the hospitals and see all the babies with little or no residual pain seeping through… but then it all hit me at once and that’s why I’ve been absent.
There are two reasons I’m telling you this, the first is…to tell you all that IM BACK! And the second is… because I don’t want any other prem parents reading my stories and thinking “wow, she deals with it all so well, why am I still traumatized by what happened to my baby?” – we all deal with stress and trauma differently. I deal with it by writing about it and throwing myself headfirst into the prem community and making tiny babies seem so normal to me that full termers look strange and oversized. That way IF I ever have to go through it again, I know we’ll get through it.
I thought I’d tell you all the story of WHEN it all hit me. It was when an innocent ENT appointment to check on Dante’s snoring turned into a rush to get him into hospital & into surgery due to a potentially life threatening condition.
Here’s the short version of the story (if it’s possible for me to EVER write something short!).
We bought an Angel Care video monitor when we brought Dante home from the hospital. It cost us close to $300 and came equipped with sensor matts. These matts basically detect slight movement, even as slight as a baby’s breath. If the movement stops for 20 seconds a warning beep goes off, and if it doesn’t resume in about 2 seconds a God almighty alarm sounds that could wake the dead. It’s an amazing contraption, some may think it’s overkill but if it keeps little ones falling victim to SIDS then it’s worth every cent I think. We got it because we’d spent so much time in hospital hooked up to monitors, we needed the security. Our paediatrician actually advised against it, often if the matts aren’t installed correctly or the baby is heavy and rolls to one side the alarm can go off and this in turn can send parents batty thinking their baby isn’t breathing. For three hundred odd dollars we figured
it was a small price to pay for peace of mind. When I think about the year or so before Dante’s surgery I wonder what could have been if we didn’t have these sensor pads and I thank the good Lord we got them.
The pads went off on occasion. Usually when Dante was congested, ordinarily by the time I’d even popped out of bed he was coughing and the alarm had stopped. My theory was he’d probably got a bit of mucous stuck in his throat, the alarm woke him and he coughed it out. I never mentioned this to the doctors or paediatrician. I didn’t want to sound like that paranoid first time mum – “oh I bought this device from Baby Bunting and now I think my son has breathing issues”. Plus, sometimes I felt like I was TRYING to find things wrong with him, it never made sense to me that I could have a son born at 29 weeks who had NO medical issues and NO breathing issues. I was convinced it was just my own madness and negativity, not what it really was, my motherly instinct.
So this happened every now and then, and in the meantime Dante was developing and growing and I started noticing a vast difference between him and other kids his age. He couldn’t focus on anything, he never looked twice at a TV, he got aggravated if ever I tried to sit and read him a story or just play with one thing for more than 30 seconds. Of course I tried to ignore it, but there were other things, his speech had halted. Where he had previously started making sounds and learning new ways of expressing himself, he seemed to have gone backwards or almost stopped. He’d been frozen on ‘da da da’ for as long as I could recall. I mentioned it to the Maternal Health Nurse and she was certain he was fine, I’d express concern to friends and family and they also told me I was being silly – that perhaps it had to do with him needing to “catch up”. I let it go, I let it go on for too long actually.
In the meantime, we had our paediatrician appointment and he noticed Dante breathed like Darth Vader, and I told him he had never NOT had a cold and he snored so loud we almost didn’t need a monitor. I still didn’t tell him about the sensor pads, because I didn’t want to be judged or called crazy.
He referred me straight away to an Ear Nose and Throat specialist (ENT), which took me about 6 weeks to get in to see. During this time, and in the few months before the paediatric appointment, he had had ear infections and tonsillitis at least 5-6 times; I’d also taken him for a hearing test which he failed. Even after that I thought I was going crazy, he could hear me, I knew he could.
It turns out he couldn’t. It also turns out his breathing wasn’t great. It wasn’t great AT ALL.
We spent 5 minutes with the ENT and the minute he saw how Dante breathed, saw the hearing test results, and heard about the sensor pads alarming (which at that stage had turned into once a week at least), he referred us directly to the head respiratory specialist in Melbourne. She called me personally that very day and wanted to see Dante immediately. Before I knew it, my healthy little man had been diagnosed with severe Obstructive Sleep Apnoea and was being put on an urgent list for surgery.
For those of you who aren’t familiar with Sleep Apnoea, it basically is when someone pauses when breathing, whenever they sleep. This can have many ill effects on people which are too voluminous to go into, however the main one in babies/toddlers is – that they can stop breathing and not start back up. In fact, at this stage it became apparent that those sensor matts might have done more than just alert us, the alarm was waking him up each time his breathing paused for too long. The only way to start someone breathing again when they stop with sleep apnoea is to wake them up, the sensor matts probably saved him, several times.
The other huge issue was the fact that Dante never got a peaceful sleep. So the entire time he had the apnoea (which could have been from when he was 6 months old!) he never would have slipped into REM sleep, which is the time when your body rests the most. He was pausing breathing 10 times per hour minimum EVERY time he slept. All of a sudden things made sense, he was 18 months old and still sleeping up to 4-5 hours during the day, even after sleeping 12-13 hours overnight.
I don’t know how to convey to you the way I felt when I found out that my little boy, the person who relied on me 100% to keep him safe, was stopping breathing CONSTANTLY. I can’t even describe how much guilt and anger I felt towards myself for not seeing the signs. And then when a doctor asks me questions all in a row and the answers so clearly point to something being terribly wrong, knowing that I’d missed it, knowing that me missing the signs could have harmed my baby… it was devastating. I don’t think I’ll ever forgive myself for ignoring the signs.
They didn’t know for sure, but 90% of cases in kids of this age it is overgrown adenoids and tonsils which cause obstructive sleep apnoea. The ENT told us that they didn’t like removing the adenoids or tonsils in children under 3, or under 15kgs. His face when I told him Dante weighed a meek 8.5kgs terrified me more than anything. The surgery had to be done, because the obstruction was very obviously becoming worse week to week. It would be performed at Monash Children’s Hospital, and he’d have to spend time in ICU due to his low weight and age.
What I found most frustrating at this time was the nonchalance outsiders showed me at the fact Dante had to undergo surgery. Yes, an adenoidectomy and tonsillectomy were fairly ‘standard’ surgeries, yes plenty of kids get it done every day and I bet if you ask around 50% of the kids you know have had it done at a young age. The difference? They were probably older, and they probably had a bit more meat on them than my tiny guy. They also probably weren’t so at risk of complications due to the severity of the obstruction that they had to have a spot in ICU set aside for them. This surgery for our little man was ANYTHING but stock standard.
The turn around for a surgery date was very quick, but in the meantime we had a hellish couple of weeks. His adenoids were getting bigger and he was becoming so aware of what was happening that several times a night he would wake up choking, often vomit, and quite often turn blue. During those weeks we were rushing him to and from the hospital and the doctors every other day, but there was nothing they could do. It even got so severe that it started happening during his day sleeps too. I was spending a lot of time sleeping on his bedroom floor next to him or watching him all night through the monitor. As much as we didn’t want him to undergo surgery it was obvious that he needed it and we were just praying this would ‘fix’ him.
We were told he could spend anywhere from 2 days to a week in the ICU dependant upon how he coped, judging by how much he was deteriorating we were planning for the worst, how wrong we were with our strong little lion.
He wasn’t allowed to eat pre-surgery and we spent almost 8 hours in the hospital waiting for his turn, I’ve never been so proud of him. Not a complaint all day – this is the thing with skinny kids, if they don’t see food, they don’t get hungry!
Friends who had experienced putting their children under aesthetic recommended that Dad goes into theatre with him. It was traumatizing to see their little bodies go limp and their eyes roll back and apparently was easier on Dads. No offence to my husband, but I knew what Dante needed going into surgery, and it was to KNOW nothing was wrong. I knew if I needed to I could shut off every bit of fear in my body for those few minutes to keep him calm and ensure he went under feeling safe. I’d done it during labour, and I’d done it for 9 weeks in hospital at the beginning of our journey, so I could do it again.
I cannot even describe to you those moments watching them put him under, they wrapped him in a warm blanket in my arms and he had his favourite bear pressed in between my face and his. I just kept talking to him and telling him he’d be ok and he stayed completely calm, then just as his little body began to go limp from the anaesthesia he tried to fight it and let out the most horrendous squeal before his eyes rolled back into his head and he went, what can only be described as, lifeless. I held it together but the minute I walked out I lost it and can’t remember a time I’ve ever cried so hard. It’s not something for the feint hearted to go through, no matter how ‘minor’ the surgery.
The hour and a bit wait was the longest in my life, but eventually his surgeon came out and the first thing he said (after assuring us Dante was fine) was, “he was suffocating on those adenoids, I’ve never seen anything so big in someone so small”. The surgeon told us we were very fortunate we managed to get Dante in when we did and that those matts had probably saved him.
I wont bore you with the details of the recovery, he was sad and sore but my God he was strong. We were out of that hospital within two days and aside from wanting a few extra cuddles you wouldn’t have known the difference. Well, there was one major difference…he could hear! The grommets they put in to clear out the fluid in his ears did wonders for him and within days we noticed his speech improving. He also seemed much less stressed and anxious and able to focus on things. To think that for around 9 months our little guy had been basically deaf and unable to breathe was astonishing, and to think what the consequences may have been if we didn’t buy that matt was absolutely horrifying.
I began to write this piece about 6 months after Dante had his surgery, and it had two purposes (neither of which was an advertisement for the sensor matts, J ). One was to tell all you parents out there to always go with your instincts and never to feel embarrassed for being a hypochondriac. If I had of followed mine Dante’s illness wouldn’t have gotten as bad as it did.
The second was to explain my absence. You see, we kind of had a dream run as far as babies born at 29 weeks gestation go. No breathing assistance, no infections, no developmental delays, nothing but a really tiny baby needing to get fattened up. So 18 months after he’s born to be told there is something terribly wrong and having to go back into the hospital he previously ‘lived’ at to have him cut open and spend time in ICU…was kind of traumatizing. Once we’d escaped, I’d planned that he would NEVER EVER EVER go back. And so I’ve found it very difficult to go back to hospital since then, I guess it’s a touch of PTSD.
Dante is turning three in only three months, it’s astonishing how quickly the time passes. It’s taken me another 12 months to finish writing this piece because I think I’m only just now kind of ready to get back into the hospitals and see more prems and hear more stories. He’s remarkable, and he breathes normally, and a few months ago we even got the all clear to finally take those matts of his bed.
I still creep in there at night and put my face on his face to make sure I can feel him breathing. Sometimes I wake up and bolt to his room because I’m certain something is wrong. It took a long time to get used to not hearing him snore. I don’t think I’ll ever feel at ease while he’s asleep.
I hope some of you premmie parents out there reading this find solace in the fact that three years on I’m still very much affected by the shock of what happened and the time spent in hospital… and I’ve just decided to own and accept that it’ll probably always be that way.
I’d also like to take this moment to acknowledge the amazing work that Monash Children’s do. I was really scared at the surgery taking place there because it wasn’t the Royal Children’s Hospital, but in all honesty, I can’t fault them. Everyone we dealt with went above and beyond and the way they prioritized Dante due to his history was really refreshing. Even all the times we turned up at emergency when he was choking or not breathing in the night, by the time we’d arrive he’d have calmed down and be back asleep, but they never made us feel stupid. We were immediately taken through to a paediatric specialist and didn’t leave till we were satisfied. I’ve since done fundraising for Monash Children’s and continue to try support them whenever I can. If you ever have a spare dime, it’s going to a great facility.
Here’s my not so little guy now by the way…