This week I will be 32 weeks pregnant with our Rainbow Baby
I am starting to allow myself a little excitement
But with each increment of eager anticipation
There comes a more than equal amount
Of panic, fear, anxiety, dread
I cannot wait to meet our Rainbow
I love her already
More than I thought I might ever allow
But I am also scared
Of losing her
Scared not only for myself and for David
But for Esther and William
I am not sure any of us can take any more pain
And so in planning for our Rainbow’s arrival
We are taking some joy in choosing things that are pretty
But mostly we are looking at how to keep our baby safe
We know in our hearts that whatever we do
There are no guarantees
The coronor told us that there was nothing we could have done for Tilda
He and The Lullaby Trust have told us that if she had a movement monitor / breathing monitor
It would not have saved her
But we may have found her sooner
Having no monitor is obviously not an option
The basic listening in monitor that we had always been happy with
Is now not going to be enough
Esther and William will be 4 next month
And we still listen in to them sleeping
And check on them all the time
For Rainbow Baby we will have a video monitor so that we can see her at all times
But to be honest apart from when we are sleeping
She is not really going to be out of our sight
But how do we choose a monitor?
It is not an easy decision
There are so many different monitors on the market
That beep and alarm for different things
When David and I brought Esther and William home from hospital
After 59 days battling through NICU and SCBU
We could not wait to leave the beeps and wires behind
The monitors and alarms that had punctuated the earliest days, weeks and months of our babies’ lives
With Tilda we were so glad to bring her home
Wire and beep free
NICU stays with you
Haunts you
Long after you walk out through the automatic doors
The death of a baby
Your baby
Stays with you for always
And the two very different
Very emotive
Scarring and scary situations
Throw up a contradiction of complex emotions
Different ideas for how best to monitor a Rainbow Baby at home
Breathing monitors, motion sensors false alarm
And while that is okay for many people
For some it will be traumatic
Every time I check on my children at the moment
I am gripped with panic
I assume they are dead
Until I see or feel them breathe
The thought of a false alarming monitor
Makes me fear for my mental health
Perhaps that is selfish, I don’t know?
I am not sure I can bear the false alarms
I think it could be terrifying
For us all
If there was hard evidence that a breathing monitor can save a baby from SIDS
I might be convinced to have one
But there are no such findings
We have a monitor ready for her cot
Because there will always be a question otherwise
What if?
And what ifs and maybes are dangerous ground
The problem that David and I keep coming back to though is this
We can have the best breathing monitor money can buy in her cot
But SIDs strikes anywhere
Babies die from Sudden Infant Death Syndrome
In car seats, bouncers, swings, parents arms, baby carriers, slings, cots, parents beds
Babies can die anywhere
So we can monitor her cot easily enough
But what about everywhere else
All those other times?
There are mobile monitors on the market
But again these can false alarm or fall off
Perhaps we would be better
Just being as safe as we can be in our practice
And trusting our knowledge and instincts?
It is just so hard to know
Our Consultant at the hospital
From her wealth of experience
And from picking up on my anxiety at meetings
Has arranged for us to meet with a specialist paediatrician
They will talk to us about all the options for home monitoring
Revise with us our knowledge of CPR and first aid
Talk to us and listen to us about our worries and our fear
And then we can make a decision
A first of many I am sure
Of how to monitor our Rainbow Baby
In a way that will keep her as safe as can be
While also keeping us sane
Growing a Rainbow
Pregnancy after loss
It really is incredibly hard
And I know that things are going to be tough
When we bring our baby home
We will love her and we will cherish her
We will enjoy her all we can
But we will fear for her and worry about her
And do the best we can to protect her
All in loving memory of our beautiful Matilda Mae
Oh honey I can totally understand how you want to prepare all the safety monitoring for your little Rainbow. I hope that your meeting with the specialist paediatrician gives you a measure of peace, even if it doesn’t completely alleviate your fears x
Jennie…congratulations on reaching 32 weeks – that’s a huge milestone when you’ve had premature babies. I hope that it’s ok to post this comment – I wasn’t sure whether it would be helpful or not and I am so sorry if it’s not.
I know exactly how you feel about having wanted to leave monitors and alarms behind after a stay in NICU. We felt the same after our stay in SCBU and decided against a video monitor and breathing board because we wanted everything to be as ‘normal’ as possible. This changed for us when our baby boy stopped breathing at 2 months. We were incredibly lucky – I woke to his tiny gasp and we saved him with CPR before he was rushed to hospital. At the time we were told that if we hadn’t woke to the sound we would have lost him. This was enough to make me invest immediately in both a video monitor and breathing monitors – you’re absolutely right of course that they can’t and won’t prevent SIDS, but my thinking was that at least they could be enough to alert us to a problem. And for us it was better having this small level of reassurance than not having it.
False alarms are scary and I am also filled with dread on checking the children (numerous times) each night. The breathing board helps with this too though. The reassurance of knowing that I will be alerted to a problem outweighs the anxiety caused when we get a false alarm.
We had a Respisense Ditto monitor attached to our daughter’s nappy for the first 6 months which never gave off a false alarm and never fell off. We used this in the moses basket, car seat, buggy…anywhere we wanted to really. We have ‘Nanny’ movement monitor boards in the cot – each single board is quite a bit bigger than others on the market (e.g. Angelcare, Tommee Tippee) and you can buy 2 and link them together, so the rate of false alarms is reduced significantly. Especially when they’re not moving around a lot in the cot. We get the odd false alarm now but our daughter is 18m and sometimes curls right up into the corner of the cot. We had very few false alarms when she was younger.
I know our situations are totally different but I hope that it’s helpful to hear about how the monitors can reduce anxiety even in just a small way. Wishing you so much luck that little Rainbow Baby carries on growing healthily until she is full-term. xxx
Thank you so much for such an honest and moving reply x I have not heard of a Nanny monitor so will go find out about it and add it to the list to discuss with Paediatrician x Thank you x
Hi Jenny – so glad you are so far along – your cervix is obviously stronger than mine! Hope I didn’t worry you too much with my story. It may not help but after my loosing babies I was terrified too of something happening once I finally got a baby home. We have always used the Angel Care breathing monitor as we figured video would just show a still sleeping baby which doesn’t tell you anything (it is brilliant and has great reviews). Of course nothing can prevent SIDS but since no one knows what causes it or if it is really one thing or many different causes that are lumped under SIDS, we figured that even if there was a tiny chance of getting there in time it was worth it. Lovedays went off a lot when she was younger and it turns out she had sleep apnea caused by a huge tonsil (that is now coming out – and I think the initial alarm beep helped her wake when she wasn’t breathing) where as, so far (touch wood) apart from once when I placed it wrong Clems has not alarmed. Loveday and Clem still use theirs every night and every nap. There is no guarantee but at least it helps me sleep at night and as long as it is gently beeping I never have that fear of going in to check on them. We used Respisense in the car but Snuza seems really popular too and I know loads of friends who love it. xxxx
So lovely to hear from you x And thank you x x x x
As you know, my circumstances are different to yours, having lost Sofia to stillbirth not SIDS, but I was very anxious about bringing home another baby, and ended up going for an angel care monitor in the cot (we already had one from our first daughter) , and a respisense monitor on the nappy. I found people very judgemental, and got fed up of being called paranoid, but having both did help to calm me a bit. We did have the occasional false alarm, but during the day I was always right there to see they were fine, and having both monitors on at night meant that if one went off, I would always be there within seconds, but I never fully panicked because the 2 alarms never went off together. I hope that the paediatrician can offer some positive ideas to help calm your nerves a little xxx
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My twins sons died after they were born at 23 weeks, so when we brought our rainbow baby home we were very anxious. We bought an Angelcare movement monitor, and had a few false alarms. It was a horrific experience, hearing that beeping, thinking that our precious and longed for son had stopped breathing or died. I would hate putting the monitor on or going to sleep myself for fear of hearing that heart-stopping sound again. In the end, we stopped using the movement mat and used it as a regular sound monitor as it was making us so incredibly anxious. I hope you find something that world for you.