You’ll probably remember our post about when our twins got sick and were hospitalised. That was when we learned about Lorelai’s Albinism diagnosis and therefore her legally blind diagnosis. We also learned that she was aspirating into her lungs when she was drinking milk and a nasal gastric tube (NG tube) was inserted. We had to learn how to feed our daughter through a range of ways (some by mouth and some by tube with a side lying feeding position to limit aspiration risk).
In the days, weeks and months that followed we made countless trips back to the hospital each time the tube came out. At least weekly but usually every few days. Our little girl was growing well and making gains, but these regular hospital trips at all hours of the day and night were not just taking a toll on us, they were taking a toll on her.
She was always such a happy, chilled baby. And then we’d have to pin her down and let hospital staff insert the tube down her nose. She’d scream and cry until she was hyperventilating. It’s horrible to do this to a child you love, especially a little baby that trusts you. I dreaded each time it came out for the hurt it would cause my daughter.
In November when Scott was away on a camp, in the early hours of the morning, during the still of the darkness, I heard Lorelai in her cot making strange breathing noises. I knew that sound all too well. I picked her up to discover once again her tube was almost out. I pulled the rest of it out, and in that moment hearing her distressed cry that we had become so familiar with for each tube change, I decided enough. Enough of the distress on my baby girl. If our “urgent” appointment at The Children’s Hospital wasn’t going to be until she was 8 months old, then my little girl wasn’t going to endure another tube unless we were admitted to hospital.
And here we are, almost 4 months later and she is thriving. Yes, I’ve had to be extremely careful with her. Always feeding her in the special side lying position, head raised and thickened milk. Yes, I’ve had to be so alert and watch for any of the signs of aspiration before it occurred. And yes, we’ve done well together.
We had one hospital trip a little while ago when our specialist team asked us to trial non-thickened milk (like most babies have). She did well for the first day and then declined slowly until she wasn’t drinking, became lethargic and had a fever. I knew these were the red flags for possible aspiration and pneumonia so I took her to the hospital which was part of her management plan. She bounced back quickly after a short stay there and we put her straight back on thickened milk. She’s done well ever since, as we continue to wait for the Children’s Hospital appointment to explore further what is going on.
Justin has similar feeding issues as Lorelai so he is fed the same way. He also has pretty bad reflux and thankfully medication has helped him a lot.
Due to the complexity of their feeding, especially the tube, I felt so confined to home. It was so hard to get out at all. Over the last few weeks I’ve been making a big effort to get out with them. It’s exceptionally hard to do with my back being so bad. I fractured my back when I sat down a few months ago and and also when I tried to lift one of my children. The last scan revealed 5 spinal fractures. It’s quite scary having osteoporosis, knowing I can fracture at any moment but I’ve decided not to let that prison me. I’ve been doing physio exercises with the aim of strengthening my core to support my bones.
Jeremiah is such a wonderful big brother. He loves his twins. They love him. Jeremiah especially loves his brother Justin. He’s always trying to make him laugh, and Justin is always looking for Jeremiah. The laughter between those two is music to my ears.
Lorelai is on the move. She’s almost crawling and isn’t going to let her vision impairment hold her back. She is extremely sound sensitive so perhaps she will love music.
We are extremely tired. That’s an understatement. Haha. Jeremiah still wakes a few times during the night, Justin wakes every few hours and Lorelai sleeps mostly through from about 8/9pm until 4am. If we could get them all in sync we’d have more sleep for us haha
Sometimes I feel like time has flown by too quickly. It really has. All those years waiting and praying felt like forever, and now the last 3 and half years have flown by. Can you believe Jeremiah is 3?! This kid is amazing. He makes me smile so much. The conversations we have melt my heart. I love hearing his thoughts.
I don’t get to update this as much as I’d like, or to talk about mum life as much as I’d like, because the season we are in now is survival mode. And trying to be in the moment as much as possible. Life as a mum of twins and a toddler is full on. Beyond any words I could use to describe this. BUT I love this. I wouldn’t change any of them for anything. They are such beautiful blessings. I love seeing them grow and develop. They take my breath away daily.
Three under three. Life is hectic. Life is full. Life is unpredictable. And I’m so blessed beyond measure with these three beautiful miracles.