Thus began Micah J's unique journey. He spent 6 weeks in the NICU waiting to grow from his lowest 2lbs 5 oz to be as close to 5lbs as necessary for him to come home. He did very well overall in his NICU stay, coming home still 4 weeks before his due date on a light flow of oxygen via nasal cannula (due to our high elevation---many near sea level babies do not need oxygen for as long as us high desert dwellers). Everything went to be expected---for the most part. Everything except that blasted head ultrasound that came back when he was 4 weeks old (34weeks gestational age) that he had what they call bilateral PVL. Although it was not extensive, it still was cause for concern, and the doctors gave us the "your kid can grow up to be fine, become a totally mentally retarded vegetable or something in between, but you'll just have to wait and see," shpeel. Needless to say we were crushed and if things weren't hard enough already grieving his brother and having a preemie now we had THIS to worry about. I won't lie, this gave me a ton of anxiety and I am pretty sure I google the crap out of PVL and outcomes. He was overseen by early intervention specialists and eventually a neurologist because of his PVL and prematurity. (PVL is basically small cysts that form in the brain in the white matter, and those cysts are spaces where the brain matter is lost. They have no way to predict the outcome, but having PVL on both sides of his brain did give him increased risk of having a specific type of Cerebral Palsy/CP)
As time went on and he grew past his due date, he began to reach many milestones and it was clear that at the very least he could hear, see very well, and was there mentally as far we could tell. Those attributes have proven to be true even to this day, just after his 2nd birthday. Micah is one smart, albeit demanding, cookie. He did however begin Physical Therapy twice a month at the age of 6 months/4 months adjusted (for those of your non-preeemie-familiar, you adjust their age to their original due date for development until they turn 2 years old. So in our case, Micah's adjusted age was always 10 weeks less than his actual age). He had been tucking his thumb under his fingers instead of over when fisted which was a sign that something neurological was going on. His biggest hurdles have been reaching his gross motor milestones. As a 2 year old, he still cannot crawl on all fours, get himself into a sitting position, sit unassisted for very long (although improving) or walk or stand unassisted at all. As of today, he CAN however commando crawl, sit when he wants to, walk in his walker, cruise around furniture, pull to a kneel and almost a stand on many objects, and he as been playing with his ability to stand and balance at the same time. His fine motor skills are pretty good, however they are sometimes inhibited by his ability to perform gross motor activities (for example, he can stack blocks and flick switches or draw, but if you have him sit on his own and try to do it it gets much harder because he has to focus more on staying up right and not falling over).
Since he started Physical Therapy his list and frequency of therapies have gone up. He went from Physical therapy every other week to now he has Two hippotherapy (horseback riding) sessions for PT a week, 1 OT (occupational therapy), and every other week he as either Cranial Sacral work done or in home PT. He also sees a well renowned infant massage therapist.
His motor skill issues are due to high tone in his lower extremities (aka his legs) so he lacks flexibility to be able to sit and move around like most babies, when he is excited, challenged or angry his muscles get really tight and he is very "Strong" due to that high tone. Standing and moving his legs fluidly can be quite the task for him. He has a difficult time coordinating his muscles because of the tone---which is due to the PVL and subsequent Spastic Diplegia of CP.
Here is a list of things (that I can remember) we have struggled with Micah from the day he came home from the NICU until now:
- Low body weight - he's ALWAYS been a teeny guy (not quite 20lbs at 2yrs)
- Reflux (mostly silent)
- Thrush (caused complications with nursing - however i did exclusively BF him until 18 months)
- Extreme Fussiness/ Colic
- Weaned off O2 3 weeks after he came home
- NEVER went to sleep easy
- SCREAMED in the carseat until about 9 months of age
- Gross motor issues, - cant sit unassisted or walk or explore on his own with help or his walker
- Fine motor issues - improving
- Frustration on his part due to his inability to explore and move the way he knows he should and wants to
- Did not sleep through the night until 18 months and has recently started night waking again
- Sensory issues
- Severe Separation Anxiety - probably associated with twin loss
- "High Maintenance Baby"
- Slight delay in speech now however I have been working on him at home and he has made great improvement!