So in 4 weeks’ time our baby girl will be 2! Ahhhh. It’s been rough to say the least, but as I reflect from where we started and where we are now I know we have come so far.

I must admit I never really go into detail with Piper’s stuff, mainly because people don’t understand and I would be talking for a long time, so I shorten things and say “good, it’s ‘good.” But really it is so much more than good.

When Piper came out of NICU after almost 8 weeks we entered such a horrible journey. She would only nap for 20 minutes at a time, connected to a feeding pump and an apnea monitor and suction at the ready incase she refluxed.

Simple things like going to the toilet was such a task. Once Josh went back to work and I was alone with Piper I could never leave her side. She refluxed almost every time she moved, was fed, rolled over or crawled and would need to be instantly suctioned to avoid choking. Sometimes she would even choke on her saliva and again would need to be suctioned.

Every single night we had to rock the bassinet with our legs to rock her to sleep whilst we held her dummy in and her head down with both hands. Bruises would develop on our leg and most nights she would suck her dummy that hard it would produce so much built up saliva she was unable to swallow and eventually choke on it as it poured out of her nose because of the cleft in the roof of her mouth. Of course this meant waking her up turning her onto her back to be suctioned only to start the routine again.

It was also a struggle making sure her nose tube (NG) wasn’t pulled out. If she moved and it got caught, the milk and her stomach contents would be everywhere – it was the most awful acid smell! If the tube was pulled out, Josh had to come home or I would take her to hospital as I wasn’t brave enough to change it. Every 1 to 2 weeks we were forced to change the tube over to the other nostril. Day in day out this was our journey connected to a feeding pump for 20 hours every day.

I wasn’t able to travel in the car with her by myself, the few times that I did my stress levels were way too high. I was trying to constantly watch her in the mirror because if she refluxed or just started choking on the saliva from her dummy I would need to rush and pull over to suction her. My heart would race 100 miles an hour, feeling panicked, sometimes her lips going blue. What if I didn’t get to her in time? My heart feeling like it’s dropped to my feet. It was never really an option unless I had to.

We spent on average 3 times a week at the children’s hospital and roughly every six weeks admitted to hospital because Piper got sick due to her compromised immunity and aspirating on her reflux. Requiring oxygen every time, IV’s and drips in her arm, at least a 3 night stay. We couldn’t stay at the local hospital so we had to travel an hour and a half each way, only one of us allowed to stay by her side.

She’s undergone a few surgeries, many anesthesia’s, x-rays, blood tests, swallow and reflux tests, hearing tests and more. One main surgery inserting a hole in her tummy with a tube being able to feed her instead of the nose tube. Every time so afraid when I handed her over to the surgeon and their 10+ entourage. Waiting and waiting and lots of waiting. The unknown of what we were going to walk back into was unbearable.

Those are just some of the things we have dealt with, some significant daily struggles. We have come along way, we have endured so much as a family, what I would give to not endure daily, not feel helpless, wondering why?

What I know is that I serve a good God. When I reflect on each of these things, everyday, every surgery, admissions, sleepless nights, tests, feeling fearful, scared, helpless, hurting, grieving from all that I have been through, God has been my anchor through it. The strength that I didn’t know I could receive, the strength given to me to not completely fall apart. Grace and mercy over my life, even when I haven’t deserved it.

I prayed every single morning and every night for Piper’s reflux to be healed. To be no more suctioning. No more pinning her down, watching her whole body shake as it burnt her coming up. Every time it would pour out of her nose. Sometimes over 40 times a day. Her reflux lessened a little bit over time, as she got bigger, after about 15months it just stopped.  She hardly ever gets reflux now, just occasionally when she’s sick or pushing from constipation. Rarely any suctioning. Praise God.

Piper now loves bed time, no doubt most days around 4.30pm she asks for bed! 6pm every night, asleep within the hour, and the last month since we started a new feeding program she has been sleeping through the night! Yay for sleep!

She’s still fed via the tube in her stomach, but she is allowed a little bit of taste testing puree through the day by mouth, when at the beginning of last year she had nothing by mouth. We are doing an intense oral motor program in the hope that her muscles will get stronger, and she’ll develop strength to chew, swallow better etc…

It wasn’t until Piper was over 16 months  the we were able to start training my mum to watch her, it is only now over the past 5 months that we have been able to leave her over night. I took this for granted when I was pregnant. I had this vision and hope as soon as I had the baby I would leave her with my parents, just like I did when I would spend time at my grandparents’ house when I was younger, and develop the relationship I had with them. So very thankful that it’s a little easier to leave her now just how I had imagined. I’m very grateful to have two sets of wonderful grandparents who are willing to help and learn all the medical needs Piper requires.

I wish I didn’t have to write all this out, I wish this wasn’t our journey sometimes, but I really have no choice. I’m learning how to deal with it daily, accepting it more, allowing my faith to grow deeper and trusting God more and more, knowing that when I reflect again I will see how much further we have gone.

I think sometimes in life you need to step back and reflect. Sometimes we will reflect on all the good things that were, and where you are now. It may be a dark place, but think not long from now you will be reflecting again and you will be looking back on that dark place and the happy place you are in now. Don’t lose hope.

I know as I reflect on the incredibly tough times we have been through, every day is a battle, but when I can see what we dealt with and what we are dealing with now, even though we have so very far to go, it’s much more manageable, a little less painful and certainly more rewarding. I am so very thankful to be Piper’s mum. I am so very thankful I have a God who loves me unconditionally and a God who has the power, who has promised me she will have her healing. One thing at a time, all in his time.

“Lord, help!” they cried in their trouble, and he saved them from their distress.
He sent out his word and healed them, snatching them from the door of death.
Let them praise the Lord for his great love and for the wonderful things he has done for them.”
– Psalm 107:19-21