Wow – I remembered my password and everything. Hi. I’m not even sure if people still read this or subscribe to it. But, on this blizzard-y day I felt drawn to come back and jot down some things as I reflect on experiences of this time three years ago.
Three years. It seems so far. Yet, it also feels like yesterday we were keeping vigil at the NICU praying, wishing, hoping, that there would be a positive outcome from all of this. For 100 and 142 days.
The third birthday was hard for me – harder than their second and I haven’t entirely figured out why. Maybe, because of all the assessments they were put through while ending Early Intervention services and looking to see what further would be needed, I had to relive the gory details of my pregnancy, their birth, and their entire medical history? Is it possibly because THREE is just so different than two? That they’re little humans now with opinions (lots of them), words, feelings, and personalities?
Or, it seems, that each year has been a specific theme or category. Year one was definitely “survival“. It went by in such a blur, you could barely take a second to breathe, and at the end of it we felt like we had run a marathon. It is awful to admit but the first year of memories is not very clear. I think we lived on adrenaline and coffee. I actually don’t know how we all came out of it alive. But we did and I think we did a decent job of it.
Year two was “stability“. We survived the first year, routines were getting set in place, it was getting easier in some ways but challenging in others. But, for the most part, we finally felt like we knew what we were doing. Other life challenges came up but the kids continued to steer the course and check the boxes of major milestones like crawling, walking, and first sounds.
Year three I’d classify as “change“. Developmentally, the difference between them at their second birthday and them at their third birthday is mindblowing. When they were diagnosed around two with speech delays, I was crushed. Even though I knew there was a delay going on – I didn’t realize just how frustrating it was for the kids. Their minds had so much they wanted to communicate and they couldn’t. We got them into speech therapy and worked with them at home with signs, pictures, and the like. Progress was made and both were discharged with 6-8 months of starting – and now, they’re consistently using phrases and their most recent assessments have them well within the average range (and a little above) for their age. Colton literally went from having ZERO words on his second birthday to testing within average and above average for receptive and expressive language. Amazing. A good friend had told me when we got the speech delay diagnoses that I would be shocked at the difference between two and year when it comes to communication. At that time I couldn’t see the forest through the trees, but she was SO right. Once it clicked, it snowballed and their language exploded. Miss Keltie also tested out of Early Intervention services in June – so she, essentially, was caught up to her peers by 2 1/2. Colton remained in mostly for his low core tone and to continue to reinforce other gross motor and fine motor skills. Their personalities evolved, too – Colton continue to grow his affinity for trains, trucks, and anything that moves. Keltie is really into music and art. Keltie had an accessory added, and then taken away. She was diagnosed with strabismus in both eyes (eye turning in) just after her second birthday. We tried glasses for a few months but it didn’t help and she ended up having double strabismus surgery at Boston Children’s Hospital. The surgery was an absolute success (and I was an absolute wreck about it) and as of now she doesn’t need glasses and her vision is good. Other changes happened as well – I got a new job. One that has me going to an office – so after 7 years of working from home and 9 years with the same company, I made the decision to try something different. It was time and I needed a change of pace. I was traveling a lot and the kids were reacting poorly to me being away. So, in November I took a new role and we have been settling into a new routine of me working in an office outside of the home. It was very bittersweet, though. So many of my colleagues there supported us through this journey and never questioned my commitment to my work when dealing with the kids in the hospital and post NICU. I will forever be grateful for the love and support I received and that is why I miss the people I worked with terribly. However, the work/life balance with my new job is much better for me and I am truly happy with my decision to leave and I think the kids enjoy having more of me and my attention, too.
Speaking of the year of change, since Early Intervention services stop at 3, both kids were assessed for the developmental preschool in town. It was three weeks of assessments (once a week). Keltie was assessed for speech only and Colton was assessed for speech, Occupational Therapy (OT) and Physical Therapy (PT). At the conclusion of the assessments, we met with the school and the therapists and got the news that both kids were accepted into the program! Keltie was accepted as an “at risk” model peer. Basically, she is caught up to her actual age and peers in all assessment areas. But, due to her severe prematurity, she is at risk of falling behind. This way, teachers and staff will keep a close watch on her and we can run any interventions that may be necessary before it would get to a point where an untrained eye would notice (i.e., us). We think this will be amazing for her – especially when it comes to routine, playing with other kids, and transitions. Keltie struggles a lot with transitions. She was a model peer in the developmental playgroup through Early Intervention and often had to be pulled out. Not much of a role model, Keltie… I’m really hopeful for this program for her and think it can only do even more to support her continued development and growth.
Colton was also accepted. He will receive therapies for all three areas – even though speech tested on par and above average, there are concerns about his volume and endurance. They feel a lot is related to his low core tone, so they’ll work in sync with PT on how to boost his speech. OT will continue to focus on maturing some of the emerging skills he has and PT is going to be the hardest work in also maturing some emerging skills and working to strengthen his core and increase his use of both sides of his body. We are super excited – although it is difficult to hear that one of your children still isn’t completely caught up after three years. But, we remind ourselves that it could have been worse. So much worse. If all they need are these boosts here and there – throw as much services at them as we can.
So next week, my once micropreemies who weighed less than 2lbs a piece will be saying goodbye to us. They’ll be dropped off at preschool with their backpacks (personalized from LL Bean, of course) and a world of opportunity in front of them. For 2.5 hours two days a week, they’ll be in the hands of others and not in our home – a new adventure to them and an anxiety ridden experience for us parents. I am excited, though, to see what this experience will do for them and all they will learn. I am so grateful for access to these services and know we are lucky to have this opportunity for Colton and Keltie. I am the most grateful for two smart, beautiful, thriving “threenagers” – even with all of the sass, frustration, and toddler drama that comes along with it. I think year four will have a lot to offer them – and our whole family. I’m excited!