Being home was surreal. Laura had never been there and I hadn’t been home since September 10th of the previous year. It was still decorated for fall even though it was the middle of winter and it looked eerily the same as when we left it almost 6 months before. We took Laura around the house, showing her the home that had been prepared for her.
We got Laura bundled up to go outside so that we could show her the yard and it started sinking in that the house had been prepared for a newborn – not a 6 month old. Her snowsuit didn’t even close to fit but we stuffed her in anyways! The simplest act of taking Laura into our back yard was amazing – that was one of the happiest days of my life.
After a few hours another reality sunk in – we were finally able to be parents but we were also Laura’s medical team. It was time for her tube feed so we placed her in her cradle and started her feeds hoping she’d take a nap at the same time.
That day marked so many firsts for us as a family.
We ate supper together – we had never done that before (it was also the first low-sodium meal that I prepared – of many!). Laura saw our house for the first time, slept in her cradle for the first time, had a bath for the first time (I know … that sounds super gross), did tummy time for the first time (that went well…not) and BELLY LAUGHED for the first time! February 18th, 2017 was a GREAT day.
We learned the realities of living at home with a medically complex child pretty quickly. I had to pull and replace her NG tube on day 1 because it had come out of position – this involves swaddling her as tight as possible and having A.J. hold her head down so that I could insert the tube as quickly as possible – it was not Laura’s favourite thing. We created a schedule for night meds so that neither one of us had to get up every 2 hours – it would be much better to have a 4 hour stretch. We also had to figure out night feeds and where exactly to put her feed pump in her nursery. We fed her with a bottle before every NG feed and she usually would take anywhere to 10-15 mls from her bottle and then be topped up with the remaining 120 mls or so every 3 hours. We emptied out our cutlery drawer to make way for a medical supply drawer for Laura in the kitchen. We learned that if she kept her headband on during her bath that it would keep her NG tube out of the water. Laura was on 14 medications spread throughout the day but she received the largest amount at 08:00 – she got all but a few of her meds at this time. Seeing them all laid out can be a bit overwhelming but Laura always took them like a champ. Twice a day I would give Laura this large quantity of meds including her injection to help dissolve her blood clots. Inserting her NG tube and giving her those shots were the worst part of my day but it was for her own good so I did it as happily and willingly as I possibly could.
None of these things were what we were expecting but none of it mattered. It was hard but we dealt with it gladly because we had Laura at home with us and that was the best gift we could have received. We decided that we would stay home for the first couple of weeks and leave the house only to pick up meds and to go to appointments. A.J didn’t have to return to work until after Easter so we’d both be home to take on the medical duties involved in Laura’s care and also both be around to just play and get to know ourselves as a family of 3.
Our families came by for visits and quickly realized that the routine would be to walk in the door, remove your shoes, wash your hands, sanitize and then proceed to the baby. It’s how it had to be to keep Laura safe and it’s really not that big of a pain – it becomes normal pretty quickly.
Now that we were home we could focus on getting Laura caught up developmentally – she was very far behind physically. She did tummy time for the first time ever and at almost 6 months old she couldn’t even lift her head off the floor. She didn’t roll over, crawl, sit or put weight on her legs. She could hold her head when being held vertically but needed support anytime she was bounced, moved too quickly, etc. We knew it would be a long road but we never had any doubt that Laura would catch up eventually – the biggest question was how long it would take her to get there.