A year ago and 2 days. I was so nervous about this PEG and overwhelmed that this was yet another medical procedure to conquer. It made me scared and kind of took my breath away, especially with a one year old at home. I feel less than enough and inadequate as it is and here we are with no other choice.
Jonnie and I had fought against doctors and dieticians at this choice. But Lauren got too unwell and too small for us to keep winning.
I remember praying about it a lot. I remember waking up one day that July with a very clear prompting of ‘get her the PEG’. So that day we rang the dietician and set the ball rolling. Bypassing another surgeon appointment as we just wanted it done now. The surgeon agreed.
So her we were. The procedure went great but Laurens body was not handling this well at all. Her chest flared up and started causing her so many issues. Temperature rocketing. Her heart rate was so fast it kept on spiking into the ‘warning’ big red bleeping part of the monitor. Her heart was at serious risk of cardiac arrest. I was terrified. But I kept telling myself that I didn’t believe that I’d been prompted to have this done, just for her to die. It wasn’t her time. But her oxygen levels were shocking. Nothing was going in the right direction for the first 4-5 days. She was so poorly.
I don’t do well when there’s not a plan. Or at least when there’s a plan but the doctors think it wise to not tell us it. I could see their concern and I grilled them a LOT! But they were careful at what they said and the words ‘we just need to keep monitoring her’ were getting worn out. I didn’t need them to monitor- I could see her struggles. But wait we did and monitor, and just at the end of the two weeks she turned a big corner.
This was right up there with some of the scariest moments of my motherhood.
But she got through it. We took it day by day. I tried to question my faith less and go forward believing she was being kept safe. And a year on… just look at her. Thriving. I wish I’d done the peg sooner. If I had done it sooner though maybe I’d always question if we’d needed it. If we had left it longer maybe her chest issues wouldn’t have been picked up on and she wouldn’t be as strong now. I trust that the timing is what it should have been.
Seeing her so strong and solid in body, makes me so grateful that these things are even possible. So thankful for the nhs and her doctors and cf team. And so grateful I listen to promptings and do what I need to do regardless of fear I feel.
My Lauren… my world xx