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Archive for the ‘Colton’ Category

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!

2015 Twin Pics

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Master Colton, or Coltonpants as we call you around here (no, I don’t know where it came from, especially considering the majority of the time you’re not wearing much more than your diaper)…  You’ve been home for about 60 days and you’ve brought a whole new level of crazy to this house!  In a good way, of course.  After having just your sister here for six weeks, you really shook up the place.  But it’s been awesome – there is no other word to describe it except awesome.  Both of our babies, under one roof, and we don’t even have to shower or get out of our pajamas to see you!  Mommy knows where your allegiance lies, too – and we’ll keep your preference for Mommy our little secret… 😉  You have such a serious look to you most of the time, but I think it’s because you’re a thinker and you’re taking everything in.  Also, you know how to play the game.  Don’t give us an overabundance of smiles or laughs because then we will get saturated – dole them out occasionally and it brings you more attention and accolades.  I’m onto you, little man.  You devious little dude…  Let’s tell the peanut fans about the HUGE strides you’ve made since busting out of the hospital, okay?

Birth, 1 Month, 3 Months, 6 Months

Health

Colton is currently 13lbs (seriously) and 22 1/2″ long – a change from the 1lb, 13oz and 13″ long he was at birth.  He maintains about a 2lb advantage over his sister and man – is he a STRONG baby.  It’s like nothing I’ve ever experience – 13lbs of pure strength.  He is eating 6oz (seriously) of Elecare thickened with SimplyThick every 3 hours and is growing steadily.  He, like his sister, is sleeping through the night – usually from around 9:30 / 10:00pm until 6:30/7:00am and it is AWESOME.  It’s amazing how sleep can make for a happier Mommy and Daddy!  Three weeks ago we got the green light to send the oxygen machine and canisters packing along with the Sp02 monitor.  What a glorious day that was!!!  We only used the blow by twice in the first week he was home (and maybe a few times to help wake up Mommy and Daddy haha).  The monitor was more annoying than helpful so once we were comfortable, we switched him to the Snuza Halo like we use with Keltie and turned the monitor off.  Colton did come down with a virus the first week he was home – and I’m 99.99% positive I gave it to him.  I got pretty sick the first few days he was home and then he spiked a fever but we were able to break it and aside from pooping on me and the NP at the pediatrician’s office (gross, awful, large quantities haha), we escaped unharmed.  He also had a tough reaction to his 6 month vaccines with a pretty high fever but infant Tylenol helped and he was back to himself within 24-48 hours.  Colton’s ROP has regressed (yay!) but his vessels are slow to grow in the eye that wasn’t treated with the laser surgery.  His ophthalmologist isn’t concerned but will be seeing him again in October to check on the growth.  Hopefully by then he will be cleared and he will join Keltie on an annual basis.  This week we brought him for a surgical consult – prior to leaving the NICU, he had hernias that would come and go.  So this was a follow-up to see if he needed bilateral repairs (like Keltie had) and the hernias were not there so he is all set!  We will, however, have him circumcised in December (Merry Christmas, Colton!!  Ugh…) and that will take care of that as long as his hydroceles resolve which they already look a lot better.  Tomorrow we have a GI appointment and I’m going to ask about his delayed emptying and possibly trying a new Prilosec-like medicine that is out called First Omperazole.  Unfortunately, the swallow study he has on the 28th doesn’t coordinate with GI so it’s all separate.  Kind of annoying but it is what it is.  We are so hoping he has matured his swallow and has no more aspiration of thin liquids, so keep your fingers crossed for good news on the 28th!  I know it sounds like a lot going on with the big strong guy but it really isn’t – he is really healthy, tolerating his severe reflux really well (he learned to clear his throat) and is a completely different baby than what we took home.  No real arching in pain (he arches when he’s pissed), no reflux attacks while he sleeps, and you can tell he is generally more comfortable and happy.  Although very serious, deep down he’s happy!

Development

Hanging out in my bouncy seat!

Colton is doing awesome on his developmental milestones!  He sits up well on his arms and holds his head up for longer periods of time.  He thoroughly enjoys admiring himself in his mirrors and has been moving / kicking his legs to try to get somewhere.  If only he realized he has to move his arms, too!  He is doing well in his rolling attempts but tries to use his back muscles more than his core muscles to roll, but I’m sure that will come really soon.  He tracks his toys well and does awesome at reaching for, shaking, and “playing” with them.  His most favorite toy is his O Ball rattle – he flips over it!  He spits up a lot for long periods after he eats, so it can get messy doing tummy time, but we also play with him while he’s in the Bumbo or his bouncy seat and he loves laying under his musical gym and watching the lights and reaching for the toys.  We continue to work on his rolling with less arching / use of his back and sitting up unassisted.

Personality

Hanging out and kicking!

As we have established, he is a bit Mr. Serious but I’m sure some of that is the fact that he is refluxing all day long.  He truly is happy and gives the best coy, shy smile and a great giggle.  He loves to kick, kick, kick in the morning and really enjoys playing with his toys.  As we established in the NICU, he loves swinging in his swing, too.  One new thing we’ve found is his interest in the TV.  He enjoys watching SportsCenter with Daddy and even settled down and watched Ice Pilots after having a bit of a fit the other night.  He absolutely loves the outdoors and has enjoyed visits to the beach and swimming in the pool.  Swimming just may be one of his favorite things! 

I can’t get over the difference in Colton – you can just see he is feeling so much better.  I think, although he still spits up in large quantities all.day.long, he is learning to manage it better and is, in return, a happier boy.  I wish you could tell his strength through the photos – he is SUCH a strong boy.  Pretty soon he’ll be bulldozing his sister and stealing all her toys!  Colton and I shared a lot of late night talks when he first came home and we still have our deep conversations about life, toys, bottles, binkies, and why he feels the need to poop right after I’ve changed his diaper.  I love his babbles and look forward to his (messy) snuggles.  He’s Mommy’s man.

Collage of Colton over the last 6 months

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I wish I could say it’s been as smooth as Keltie’s homecoming, but it hasn’t. Colton is home, but on an oxygen saturation monitor as he’s not 100% spell free. We also have oxygen in the house in case he needs blow by to get him out of a spell. Kind of scary stuff, but it is what it is. Also, Chris fell down our stairs last night and severely injured his collarbone / shoulder, rendering that arm useless. So, it’s been all on me at night and we’re lucky to have my MIL helping during the day when she can. If anyone local is willing to donate some time to us, we’d gladly accept it. It’s been a rough 24 hours…

I know I owe a true update – like about Colton going back to Boston Children’s and having eye surgery, then back to SSH. And about having Keltie home and enjoying her. It’s just been insane, to say the least – especially since I’ve been working full time as well. I’m beat. And looking for a break.

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…I came into the NICU today and there was a sticky note from the OT/PT Developmental Team that had some literature on development and these cute little signs that talk about each of the twins and theirs likes and dislikes.  The OT/PT team has been working with them for the last week or so and they provide this information to help us as parents and our visitors learn how to interact with them.  I photocopied the sheets so I could bring them home and I wanted to share them here as well.

Hello My Name is Colton and I was born on January 24, 2012.

I can:

  • grasp your little finger
  • suck on my pacifier
  • open my eyes in dim light
  • kick my legs

I like:

  • soft voices
  • firm, containing touch
  • to be swaddled
  • dim light

I need a break when:

  • I grimace or cry
  • I close my eyes or look away
  • I splay my fingers
  • I sneeze, hiccup, or yawn repeatedly

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Today was finally the day that I got to hold Colton!  Three weeks and a day from when he was born, I finally got to hold him against me and it totally filled me with love.  Similar to when I held Keltie, his breathing tube and ventilator hoses were clipped to my shirt and he was placed inside my button down and covered in a blanket.  He was SO content the entire time – his sats were awesome and because of this, I got to hold him a little longer than usual.  He loves his mommy!

As is typical with me – we have “real” pictures on the camera, but here are two from my iPhone:

Sweet little man.

 

Absolute love.

 
 
I owe a “normal” update as well – so you’ll get two updates from me tonight!

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