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Archive for the ‘Boston Children’s Hospital’ 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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Sooo…it’s obvious that time is something I lack these days.  Such is life I guess – between the peanuts, their chaotic schedules, work, home, holidays, etc…it’s been quite busy.  I keep saying that I need one of those little yellow minions to help me out but I’ve yet to figure out how to get one.  But, here I am and we should get caught up on the wee ones!

On October 24th, they turned 9 months old!!!  Amazing – simply amazing.  Here were their  9 month (5.5 adj) pedi appointment stats:
Colton
– 17lbs, 2oz (10th percentile for actual LOL FATTY)
– 25.75″ long (25th percentile for adjusted)
-17.5″ head (25th percentile for actual – huge dome)
Keltie
– 14lbs, 4oz (2nd percentile for actual YAY!)
– 24.75″ long (20th percentile for adjusted)
– 16.75″ head (11th percentile for actual)

They have made it onto the chart for all but their length – I am so shocked considering how tiny they were!  As of last week (they went for their first Synagis shot to help fight against RSV), Colton was 18lbs, 1oz and Keltie was 15lbs, 6oz so they are doing a fantastic job growing!

We were blessed to have my friend Candace from Candace Schwab Photography in town the day before their 9 month birthday and she was kind enough to come down and do a family photoshoot for us.  Her pictures came out absolutely incredible – as always!

 They experienced their first earthquake and hurricane as well – and survived both.  Lucky for us they were minor events but it was my first earthquake and I am over 31 years older then they are! 

Colton and Keltie both sat unassisted in the month of October.  Colton is perfecting his sitting while Keltie has a little more work to do.  They continue to roll all over the place, laugh while being tickled (and sang to), and love eating all kinds of new food.  We got the green light to start adding proteins so they have had chicken, turkey, yogurt, quinoa, and other yummy things. 

We attended their NICU Follow-up Clinic at Boston Children’s Hospital at the end of October and had assessments done.  The clinic included meeting with two neonatologists and a psychologist.  It was a bit uncomfortable (we were in a room with one of those mirrors where people could watch from another room), but we tried to go with the flow.  Colton came out in all areas between his adjusted and actual age so he is doing really well with his milestones.  Keltie met her adjusted age for almost everything but was slightly delayed in a few areas so we scheduled a physical therapy consult to see if there is anything more we can do to help get her caught up.  They also suggested a second hearing screen (ABR) for both of them and that is scheduled for December.  Nothing major to be concerned about, but making sure everything is still good.  Much of the testing was done with toys so I wasn’t surprised that Colton did so well – he’s the toy guy.  Keltie much prefers to be social with people so I think that may have played into the results slightly but we will get her there.  I know she will walk and talk eventually! 

We also got to experience their first Halloween!  A good friend of our family agreed to sew handmade costumes for them and they were Pebbles and Bam Bam!  The costumes came out incredible – Lois did an amazing job!  We took them trick or treating to a few neighbors houses and it was fun – Keltie enjoyed the crinkle of the M&M package she got, while Colton was more interested in chewing on his basket.  No surprises there!

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Well, it’s been a while since the last update and it’s been a bit insane to say the least. 

Last Monday was the usual dreaded eye exam.  And it ended up being one of the worst days since the twins were really sick and little.  Keltie’s ROP progressed to Stage 3 in one of her eyes and the doctor wanted her to have a second opinion up at Boston’s Children’s Hospital (BCH).  Colton’s spells had reached the point where they stopped feeding him by mouth and put his feeding tube back in because the spells were so bad and so frequent.  With that, he was also ordered to go to BCH for a swallow study (his eyes were still Stage 2).  So on Monday, we packed up both of their things and were discharged from South Shore Hospital (SSH) and both babies were taken by separate ambulances to Boston.  It was an emotional nightmare.  I am so grateful, though, that one of their primary nurses, Fran, who wasn’t even working in the NICU on Monday agreed to transport them for us.  Fran came in to check on them during a break in her inservice training and I burst into tears.  I begged her to be the transport nurse if they went on Tuesday and she got right up and said she was going to do it that day.  And she did.  And I owe her the small amount of sanity I had left – it meant so much to us that she went above and beyond.  She’s so special to us and our kids.

Tuesday, Keltie had her eye exam at BCH and their ophthalmology team agreed with the doctor that it was Stage 3, but she was “pre-plus disease” which means that she is not in need of surgery at this point.  They took some amazing pictures of her eyes and showed both Chris and I what ROP looked like, etc…  Colton had his swallow study that afternoon and it showed that he was aspirating on regular breast milk thickness and nectar thickness, but that he was safe for the most part on honey thick feeds.  So the plan was for me to return Wednesday morning and feed him on the thickened feeds (and you can’t safely thicken breast milk until they are 44 weeks old, so he is now on all formula feeds thickened with rice cereal) with the Feeding Team watching to determine how long he could handle the thickened feeds.  The concern was him burning too many calories trying to suck the thick feeds and tiring out, so they prepared us that he may only be able to take 10mLs of his feed (full feeds are 60-70mLs).  Little did they know my son…

Wednesday morning I arrived and did Colton’s feed.  He finished the entire thing in 20-25 minutes no problem.  That’s my boy!  So, they were comfortable saying he could do full feeds by mouth as long as he did it within 20-25 minutes.  Colton was happy about that!  Both babies were scheduled to have surgical consult at SSH before they left for their hernias, so they did this at BCH and with Keltie they were concerned about the “hardness” of her “hernia”.  So, they schedule an u/s on her hernia to get a better look at it.  Come to find out…her left ovary had made its way into her inguinal canal and that’s what they were feeling!  The surgery team came up to speak with me and explained that due to the nature of the organ being in the canal, they had to do surgery within 24-48 hours.  I was petrified.  They were able to push the ovary back up (with Keltie screaming – the poor thing!) so they were okay waiting until Thursday to do the surgery.  That started a flurry of activity and me meeting with the anesthesiologist, surgeon team, etc….  I couldn’t believe my little 5lb miracle was going to have to be put under for surgery and I was so afraid that it was going to impact her progress with her breathing and being off of any breathing support.  Needless to say, I didn’t sleep much that night. 

Thursday morning we found out that Colton was being transferred back to SSH.  So, Chris went up to Boston to be with Keltie for her surgery and I met Colton at SSH to get him settled back in before I headed up to Boston myself.  Colton was welcomed back as the Mayor of the SSH NICU / Special Care Nursery and I felt comfortable knowing he was with people that knew him so well and loved him so much.  I got to Boston just in time for Keltie to come back to her room for recovery.  She had an IV in her head – but thankfully Chris prepared me to see that before she was wheeled in.  The surgery team fell in love with her and wanted to keep her 🙂  She did really well and ended up with a bilateral hernia repair – so two incisions about an inch or so in length.  The surgeon said he did it “on her bikini line” and I literally replied with “what do I give a shit about my 3 month old daughter’s bikini line!”  But, apparently there are some other parents who get concerned about that stuff – hey, to me, they are her little battle scars for being such a brave, strong girl!  She came up from surgery and wasn’t intubated, which I was SO grateful of.  She did need some low-flow nasal cannula support for about an hour but by Friday morning she was just like she was before surgery and doing all her breathing on her own.

Friday morning we found out that Keltie was ready to be transferred back to SSH and I headed up to Boston to pack her things and wait for her ambulance chariot to get there.  It was so nice to have them back together and back to their “home” hospital where people know and love them so much.  Fran was working the weekend and had them and it filled my heart to not have to be worried about them being further away in a place they didn’t know with people who didn’t know them like the team at SSH does. 

Since being back at SSH, they have both been doing well.  Colton is a moose and weighs 6lbs, 8oz and Keltie is holding at around 5lbs, 2oz.  They are preparing Keltie for discharge and it may even be this week!  Colton is still struggling a bit with some spells – but not nearly as much as he was prior to going on the thickened feeds.  His reflux is just brutal on him.  But, on Saturday he was put on room air with no breathing support and he’s been doing awesome ever since!

We’re getting close…there may actually be a light at the end of the tunnel.  Of course it wouldn’t come without some dramatics prior to, but should we expect anything less?

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