Thursday, November 2, 2017 - THREE YEARS!!!

Where has the time gone?! Our little 655g peanut turned three years old today. This week has been difficult for me...lots of milestones with both Sloane and Connor and have been thinking about Quinn a lot more than usual because of them. I still feel like there is someone missing all the time. Like we are supposed have three babies but only two are with us. I think I would still feel the same if we had another baby though. I think I will always feel like one is missing.

Connor is doing so well though. He has started RUNNING while wearing his braces and without. He still falls down all the time but he is really trying to run to keep up with his peers. He still has a resource consultant, occupational therapist, physiotherapist and speech language pathologist. He still has to patch his right eye nightly. He has to have surgery at McMaster to remove his tonsils and adenoids in 6-8 weeks. Hopefully this will help with his breathing and swallowing issues.

He is still a tiny guy at only 23 pounds and 33 inches tall but he makes up for it in personality! He never stops talking and loves to sing. He has the funniest sense of humour and makes us laugh all day and then laugh all night thinking about what he said earlier that day. He loves his sister and seems very proud to introduce her to his friends and teachers at daycare when we come to pick him up. He has an amazing memory and knows what colour and type of vehicle all of his family members and teachers drive. He says he wants a Jeep one day!

He loves GG’s mac and cheese, trains, cars, painting, baking, and reading, especially Mortimer, Clifford’s Good Deeds and The Very Hungry Caterpillar. He adores the Wiggles, Peppa Pig, Cars and Thomas.

Connor, Daddy and I are so proud of the big boy you have become. You are the toughest and sweetest kid we know. We love you more than anything. Happy 3rd birthday, Bud! 

Saturday, February 4, 2017

Connor has been working really hard at learning how to walk the past couple months. He was fitted with AFO orthotic leg braces in December and we brought them home mid-December to start wearing them slowly, to gradually work up to 8 hours a day of wear time. Connor has been tentatively diagnosed with very mild cerebral palsy based on his medical history and gross motor delays but we will be pursuing more testing at his next growth and development appointment for a formal diagnosis. This would allow us to access special assistance programs and funding in the future for him to help with his delays. Connor absolutely refused to wear the braces at first but with lots of encouragement, distraction techniques and Smarties and Goldfish crackers, he let us keep the braces on for 8 hours a day. This week was the first week he wore them to daycare and he actually didn't even care about them and we were told he was so proud to show off his "new shoes" to his friends and teachers. He gradually became much more confident with taking one or two steps without holding on to anything for support and today he walked about twelve steps on his own to Mike! At 23 months corrected, our boy has learned to walk! We are so proud of him. :)

Friday, November 11, 2016 -TWO YEARS!

Connor turned 2 on November 2nd! He is now 20.5 months corrected. He has been doing so well. Since the last update at the end of August, he has learned dozens of new words and actually took his first steps on his own.

We are still working with our OT to help him walk because, even though he will take 4-5 steps on his own, he has no desire to walk more than that and prefers to crawl or cruise along the furniture to get where he wants to go faster. We have an appointment in December with an orthotist to fit him with special shoes to help support his ankles. His ankles and legs have less muscle tone than normal from being born premature. 

He also had a barium swallow test and an abdominal ultrasound this week at McMaster. The swallow test was to investigate how he eats to see if there were any hernias, fistulas, or defects in his upper GI tract. He had pneumonia at the beginning of October and has had bad reflux issues in the past so we needed to make sure he didn't have pneumonia caused by aspirating food into his lungs when he eats. Fortunately, the swallow test proved that he has normal anatomy but is a little uncoordinated with swallowing some foods and will need practice to correct this. He also eats and drinks way too fast so we need to change some of our techniques to work for him. He was very well behaved for the test and ate surprisingly well considering all of his food was mixed with or dipped in barium solution. 

His ultrasound was to check the muscle and soft tissue around his rib cage because he has an indent on one side of his ribs and the chest x-ray showed that the bones look normal. His doctor thinks it might be just a benign defect from being born so premature and from being on a ventilator for so long in the NICU. 

Connor is still doing great at daycare part time and he is exhausted when he comes home. He still has a resource consultant that visits him there every week to monitor his progress as well as a speech language pathologist that checks in from time to time to make sure he doesn't fall behind. 

Connor's birthday brought back lots of memories, both happy and sad. We still miss and think about our little Quinn every day. We also made the announcement at Connor's birthday party that Connor is going to be a big brother next year and we are currently 15 weeks pregnant with another baby! We waited longer to tell our families about this one because we were (and still are) understandably anxious about this pregnancy and had some little hurdles we wanted to get past first. We also wanted to take the time to ourselves to get used to the idea and deal with all of our complex emotions relating to our previous loss and NICU experience. I am still considered high risk because of my previous history of preterm labour but so far so good with this one and we are being monitored very closely by a maternal fetal medicine specialist at Mac. We are also more optimistic that this will be a successful pregnancy because it is a singleton pregnancy this time. Fingers crossed that this one waits until MUCH closer until the due date before making an appearance! 

Monday, August 22, 2016

Long time, no post. I thought it would be worthwhile to give a little update on Connor since it has been awhile and people are always asking me how he is doing these days. Here goes.

We reached another big milestone today- Connor turned 18 months corrected age! Still don't know where the time keeps slipping away to and it scares me a tiny bit at how fast he is growing up. He was so little for so long and the newborn stage seemed to last forever and now he is just racing through toddlerhood. 

Connor has become a much better eater and weighs 20 pounds, 6 ounces and stands 30 inches tall. He is petite but proportional. He is still between the 3rd and 15th percentiles for weight but is holding that rate steady and the doctors are happy with his progress. That doesn't mean I still don't worry a lot when he gets sick, or tired and doesn't want to eat or drink everything I give him. He likes to try to feed himself but still needs lots of help. His favourite foods are chicken, scrambled eggs and Hollandaise sauce. He loves yogurt, Goldfish crackers and kiwi. This week he tried a sausage roll (compliments of Nana) and edamame. He has 12 teeth plus 4 new ones that are just peeking through. A couple of weeks ago, Connor started refusing his formula bottles and would have a full blown toddler meltdown if I even suggested that he drink one. A nutritionist at Mac gave us some samples of flavoured breakfast meal replacer to mix with milk and he loves them so far. His reflux is also decently controlled with medication now. 

Since Connor started at daycare part time, he has learned some new words (bye-bye, up, Poppa, Nana, and uh-oh) and has become pretty steady on his feet. He has a little girlfriend there that holds his hand and he will walk a couple steps behind her. He is very close to walking on his own. He has begun climbing anything and everything. His teachers tell us that they really have to watch him closely because he will climb on top of their tables! The daycare has been awesome with accommodating Connor's needs and letting us bring in our own food for him and even a special chair for circle time (recommended by our OT) that helps him sit properly and join in.

We had another eye follow up appointment earlier this summer and the doctor told us that he still has a little cataract in his left eye and that he is definitely near-sighted and will need glasses by age 3. He asked us to put an adhesive eye patch over his right eye to strength the vision in the left. We are supposed to aim for 30 mins per day which is near impossible for an active toddler and busy, working parents. We probably patch 3-4 times per week and for 10-25 minutes at a time because he hates it sooooo much and it is such a struggle to keep Connor from ripping it off immediately. We are hoping to increase this as he gets older. His eyes are stable enough that we could stretch our appointments to every three months now!

Connor is still being followed by an occupational therapist, developmental consultant, resource consultant, and speech language pathologist. With all of this support, we are hoping that he learns how to walk soon! He is a little bit behind in his speech (although he can certainly get his point across by non-verbal cues!) but not too bad for a 24-weeker. 

Last week we had a long appointment at McMaster for something called a Bayley test. It is a developmental test done at 18 and 36 months old that tests the cognitive, language and motor development of toddlers by playing specific games with them. Despite how anxious I was for him to take the test, he actually seemed to do pretty well. He also seemed to have a great time being tested and loved all the extra attention he was getting. He even tried to show off and climb a set of stairs for the tester. 

I follow a few preemie message boards online and every once in a while, there will be one parent asking for success stories of other 24-weeker micropreemies. Sometimes I want to tell Connor's story because I'm so proud of him. Sometimes I don't because it's exhausting and I don't want to scare them because it gets so much worse before it gets better. But if they could see what I see now, 22 months later, they would never second guess the strength of their own child. My kid is my hero. He is so much stronger than I am. Stronger than Mike. Than anyone I know. He is one determined little boy. And so freaking happy all the time. 

I still worry about his future and every appointment he has I worry that they are going to find some condition or behavioural problem caused by his prematurity. BUT he is doing amazingly well considering everything! His brain is healed. His heart? Healed. Lungs. Pretty good. Ears? HE CAN HEAR! Eyes? He will need glasses but how ADORABLE will he look in them?! 

So...is Connor a success story? Hell, YES I think he is. :)

Connor was reunited with his nurse at McMaster's annual NICU Graduates' picnic!

From 655 grams to 20 pounds!

Monday, May 2, 2016

Well, Connor is now 18 months/14 months corrected. He is a HURRICANE of giggles and drool. Remember the days where I was so bored because all he did was sleep? Well, I look forward to those quiet nap times now! 

He does four point crawling about half the time now, which is a huge improvement from doing 100% army crawl that he was doing before. He is really confident at standing now and cruises along the furniture and can lean back against a wall without falling. He loves to push his big dog truck walker around the living room and squeals with delight when he gets going really fast. He loves sharing with Cooper and playing tug of war with him. He knows where his nose, ears and belly button are and will proudly show you when asked! He can say 'mum mum,' 'dada,' 'hiya,' 'I did it,' and 'pretty.' He knows how to crawl up AND down the stairs now and points at everything.

Connor still can't feed himself his own bottle and still doesn't really tolerate some finger foods because of his oversensitive gag reflex but we are working on it and making some slow progress. 

He went back to take another hearing test because the last one's results were inconclusive. He passed this one with flying colours and we don't need to go back! Connor was also seen at Mac for his one-year eye follow up. He still has a cataract in his left eye and is near-sighted. Luckily, babies don't need to see long distance and we won't have to fit him with glasses until he is about three years old. The doctor suggested that we can try to have Connor wear an eye patch for a half hour every night on his good eye to force his brain to "listen" to his bad eye and strengthen it. Unfortunately, getting a 14-month old to keep an eye patch on even for a minute is near impossible.

We are still working with our amazing occupational therapist, as well as a speech pathologist and developmental consultant and also a physiotherapist soon. Connor's whole team is supporting him to adjust to and thrive in daycare, which he starts tomorrow. I'm so proud and excited for him....but I feel sad because I wish that Quinn was joining him. :( It is what it is. We have a resource consultant that will be dropping in to check on Connor and observe him and make sure he is getting every accommodation that he needs to succeed in daycare. The centre has been awesome about this and are even allowing us to bring in our own semi-puréed food so that he can eat with the other toddlers. Fingers crossed that everything goes smoothly!