Marco's Journey

Marco is 3! In some ways he is exactly what I expect a 3 year old to be - stubborn, adventurous, always trying to play with his brothers - in other ways he is so far from typical. In all ways, he is an absolute joy. Though we continue to have fear of the unknown, I’m starting to believe he’s going to be able to live a full, independent life. Our biggest question: how much does he understand? In most ways he seems like an average 1.5 year old if I had to put an age to his development. But then he’ll surprise us. Like when he sat down and started pointing and saying all the letters of the alphabet, or when he showed us that he not only can count, but recognizes all the numbers. Is he functioning at a 3 year old level but can’t tell us? Only time will tell. Some Updates: Physical Gross Motor Marco has a solid toddler walk - still using his full body and still a bit unsteady on his feet, but he’s gaining momentum every day and is pretty darn fast when he wants to be… which is all the time....

I cant believe my baby boy is 2 years old! He certainly does not seem like a 2-year old and I’m ok with that. We really don't see a lot of other kids his age so I don’t have a daily reminder of how far behind he is. I know he is, but it doesn’t feel that way on a regular basis. He just feels like Marco. Except for big milestones, like a 2nd birthday when I realize just how delayed he really is. I’ve been saying he’s about 6 months delayed - if you take into account his prematurity, he’s around 21 months, less 6 months delayed, that’s around 15 months - which is roughly accurate for where he is developmentally.  Physically: We've got a toddler! Just this past week or so he's started to do a standard toddler beginner walk: falling when startled or changing direction or when he gets excited, etc. - so really close. He took his first steps around mid-January. My other boys went quickly from first steps to walking, but not surprised Marco is taking a bit longer. Almost there tho...

Unbelievably, Marco is one year old (9 months adjusted)!  Unbelievable, not because of the passage of time (which always seems to amaze) but because in most ways that matter Marco is nowhere close to the behavior of a 1 year old kid. In fact, I think the only thing that is “one year” about him is his weight - 81st percentile compared to others his age. My crazy-happy and easy-going baby is doing so well in so many ways - observant, joyful, social - but, heartbreakingly, the gap between Marco and typical development seems to be steadily increasing. First, the good - no, the amazing. Marco is by far the happiest and easiest of my babies. That is saying a lot, because my second was SO happy. He sleeps like an angel and only cries when he has poop in his diaper, wakes up alone from a day nap or we forgot to feed him (which has only happened a handful of times… but still - 3rd baby syndrome!) He loves any kind of attention, gives everyone the biggest smiles and makes the sweetest giggle...

9 months, 6 adjusted Happy 9 months (6 adjusted) to my sweet, happy, easy going boy. He is honestly such a joy and helps ease the frustration we feel with the constant bickering from the older two boys. I’d like to say he’s surpassing all expectations, blowing through milestones, but alas - he’s doing pretty much what we anticipated. Short story, he’s excelling in certain areas (fine motor, tracking, interactions, weight gain) and delayed in the ways typically associated with his genetic deletion (gross motor, speech, height). All in all, he is doing really well and we are so thankful - no real issues from his prematurity (which is amazing) and so far nothing too scary regarding his development. Some things we’re looking out for: Low muscle tone - our biggest concern right now and definitely a sign of his genetic deletion. In essence, he has weak muscles. For instance, most babies by 6 months can do a comfortable tummy time, lifting themselves up 45 degrees and leaning on their han...

6 months (3 adjusted): The Good and the Bad. I cannot believe half a year has gone by! With Marco spending 4 months of that time in the hospital, I feel as though I’m only just beginning to know my son, yet already I am back at work. Thankfully, I am able to work from home and Marco is being cared for by family, so the transition hasn't been too awful. My last update, Marco had just been readmitted for a common cold - he spent a total of 3 weeks in the hospital for that, two of which was intubated, and since then we have been on quite a roller coaster ride.  Actually, it's been more like the start of a roller coaster ride: gradual increase in happiness and health, and then a dramatic turn down with negative news in the past week. Let's start with the good:  Tube - no more! Marco is healthy, has remained out of the hospital and is eating 100% through a bottle! No more feeding tube!  It was kind of like when you finally get tech support on the line, only for your issue to m...

4 months, 1 month adjusted.  We’ve hit two weeks in the hospital with a common cold and we’ve only just removed his breathing tube. Now we wait another 1-2 weeks as they slowly wean Marco from CPAP oxygen to high flow to regular to none.  I should be used to this by now, but somehow these past two weeks feel longer than the previous 15 he’s spent in a hospital bed. He’s been alive for 19 weeks, he’s been home only 2 of those, and due to my split life visiting my eldest all summer, I’ve only been with him for 5 days. 5 freaking days.  “He’s where he needs to be”, “he’ll be stronger soon”, “he knows you’re there and feels your love”, “he’s got the best care possible”, “this too shall pass,” yada yada yada. These well meaning words of comfort have stopped working to give me peace. No words can give me back the first 4-5 months of his life. The first smile, giggle, roll that should have been. The joy of bonding with my last baby during maternity leave. I’ll be lucky if I get...