Happy Birthday Elyse!

Well, we made it!  After a year of ups and downs, tears and laughter, Elyse turned one year old last week.  Despite the mixture of emotions leading up to it, her birthday was a wonderful day full of smiles and fun.  It was so nice to spend time together as a family, to celebrate all that we have been through and look forward to all that the future holds.  And let's be honest, the waterslides, games, and all-you-can-eat buffet sure didn't hurt either!
 

great way to spend a birthday! 

 

The celebrations continued once we were back at home, where Elyse had her first taste of cake and ice cream.  She also had a birthday photo session at a local studio.  I was fortunate to have been able to defer my maternity leave until she was home from the hospital last year, so my return to work isn't until May -- and I'm sure there will be plenty of celebrations still to come!

 

do you think she liked it?

 

beautiful birthday girl

 

In honour of Elyse's birthday, I went back through all the pictures and put together some highlights of the past year.  It may not have been the easiest journey, but she makes it all worthwhile and we are so proud of her strength and resilience throughout it all.  Now let's just hope the next year is a whole lot less eventful.

 

Mixed emotions

Exactly one year ago today, I sat in my OB's office and listened to him tell me that our baby may be in danger.  That she wasn't growing enough and they were starting to get concerned.  For the next three days Matt and I tried to stay calm and away from Google, although it was a futile attempt on both parts.  Three days later, after a follow-up ultrasound showed things were getting worse, I was transferred and admitted to a hospital with a Level III NICU, and 48 hours later Elyse was born. 

As her birthday approaches, I have been anticipating the day with mixed emotions.  We are so thankful for Elyse, and the challenges she has overcome, but how do you celebrate one of the scariest days of your life?  A day that robbed us of the joy and celebration of a new birth, and instead replaced it with fear and anxiety?  That took every ounce of control from our hands, and set the stage for the emotionally turbulent year to come? 

I'm just not ready for the big celebration yet, even though I think Elyse is especially deserving of it.  So instead, we will delay the big party until closer to her due date, and focus on spending time together as a family.  We are hitting the road, and taking the kids somewhere fun, where we can simply enjoy the moment and celebrate our time together (Great Wolf Lodge, here we come!).  I may not be looking forward to the big day, but I sure am excited to spend it with my three favourite people, and celebrate all that we have been through together.

As for Elyse, she is doing wonderfully.  Her feeding tube came out a few days before Christmas, and although her weight gain was stagnant for a while, she is finally starting to eat well and we are happy to see those numbers starting to climb.  She is still being followed by a dietitian and occupational therapist, but is making good progress and it has been nice to watch those appointments starting to get further apart.  We also received good news last month that her blood clot is stable, and were finally able to stop giving her twice daily Enoxaparin injections (hooray!).  It sure is nice to finally feel like things are getting back to normal again -- I think that in itself is something to celebrate!

Update from home

Elyse has been home for two weeks now, and it has been a whirlwind to say the least.  CHEO did a great job facilitating our transition home, and set us up with home visits from a nurse, dietician, and occupational therapist.  Elyse has also been having regular visits to her pediatrician and follow-up appointments at the hospital with the hematology and ENT clinics to monitor the resolution of her blood clot and granuloma.  Suffice it to say this little lady has way more of a social life than we do these days!

 

happy to be home

 

Our biggest challenge right now continues to be her feeding, although we are making progress day by day.  She started nursing again within our first few days at home, and is slowly getting stronger and able to take more each day.  In the meantime, we are still using the NG tube to top her up and ensure she is getting enough calories and staying hydrated.  It has been a fine balance of trying to have her hungry enough to want to eat without losing weight -- and the game plan seems to change every other day, depending on how she responds.  The OT was in today and noticed a big improvement from last week, which is very encouraging.

 

staying entertained during a feeding

 

It has been difficult at times to lose the mindset that something else is going to go wrong.  One of our first nights home, Elyse was unusually fussy and none of us slept much.  We started to wonder what it could be -- is she getting sick again?  Maybe brewing another infection?  Should we take her back in?  It wasn't until the next morning that we noticed two freshly cut bottom teeth peaking out from her gummy smile -- a sweet reminder that life goes on, and maybe it's not always the worst case scenario.  She certainly does not seem to have missed a beat in her developmental progress, which is a big relief.

 

what's all the fuss about?

 

Despite a few extra challenges and a significant decrease in sleep, it has been absolutely wonderful to have our baby back home again.  And being home in time to prepare for Christmas as a family has made it that much more magical!

 

Home at last

After six very long and grueling weeks, Elyse was finally discharged from CHEO yesterday.  The last few days have been a flurry of picking up equipment, filling prescriptions, and coordinating a variety of follow up appointments over the next few weeks, but we finally made it!

so long, 4 East!

She is still using an NG tube to finish feeds, so we needed to rent a feeding pump to use at home, as well as learn to insert the NG tube ourselves.  We saw the pediatrician today, and came up with a plan to start waiting a little longer before topping her up through the feeding tube, in hopes that she will start to bottle or breastfeed more efficiently herself.  I feel like we are getting close, and hopefully being back in her home environment will help encourage her to return to old habits.  She will also continue to receive a Pulmicort (steroid) mask twice daily for another week, to treat the intubation granuloma.  Fortunately, we were able to borrow a nebulizer from the hospital to finish those treatments at home. 

aw Mom, do I have to?!

Despite having a few more challenges to work through, CHEO has been really good at supporting us through the transition home, and we are so happy to finally all be under the same roof again!  Emmett was especially pleased that they could finally wear their Halloween costumes together...better late than never!

finally reunited with his favourite dalmation

Day pass

Elyse had a good week, and continues to make progress.  Her trial off the NG tube last weekend was good, but not great, and so she is still using it for now.  The good news is that her oral feeding is getting better everyday, and she has recently taken up to half of her feed by bottle, before finishing it through the NG tube.

 

Ever since she was extubated, we had noticed she was more hoarse and wheezy than usual.  We had a consult with an ENT (ear, nose, and throat specialist), who found a granuloma (like a small bump or lesion) near her vocal cords, caused by irritation from the intubation.  She was put on an inhalable steroid for one week, and we have already noticed a reduction in her noisy breathing.

 

The highlight of the week was getting approved to take her home on a day pass over the weekend.  She was able to leave each day after her 9am assessment and medications, and would return for her 9pm ones.  Needless to say, after 5 weeks in the hospital (and 3 weeks of staying round-the-clock), it was wonderful to all be under the same roof again, even just for a few hours.

 

Emmett was overjoyed to see his sister, and would pull up a chair during her feeding sessions to keep her company.  He even let her use his favourite bunnies during her nap -- now that's love! ❤️ Now it's just a matter of tying up all the final loose ends and follow-up appointments, and hopefully it's just a matter of time before we are home for good!

 



lots of catching up to do

 

not going to let her go anytime soon!

Smiles all around

It has been a good week.  Over the last few days we have noticed Elyse's personality starting to return and she is acting more and more like her old self -- complete with smiles, giggles, and her sweet baby babbling.  She has been weaned completely off the methadone, and will continue to wean off the clonidine over the next few weeks.  Interestingly enough, clonidine is primarily a medication used to treat high blood pressure, so the slow weaning process is not so much for the withdrawal as it is for the rebound hypertension that may occur if it is discontinued too quickly.

happy to see that smile again

 

We are still struggling with her feeding, and trying to get her off of the NG tube.  After being intubated for so long, she has most likely developed a bit of oral aversion, and I can only assume some muscle weakness too.  We are working alongside the Occupational Therapy (OT) team here at CHEO, and they have been great at suggesting a few exercises and techniques to try to make her more comfortable. 

 

the wild 'do came back too

 

The other issue is that because of her feeding schedule (every 3 hours over an hour and a half), I don't think she gets hungry enough to want to drink anything else by mouth.  So this weekend we are trying without the feeding tube for a few meals, to see if she will be more willing to take the bottle when she stops feeling full all the time.  And hopefully once she is comfortable drinking from a bottle again, we can transition back to breastfeeding -- because heaven knows I'm about ready to throw this pump out the window!  The doctors have mentioned possibly bringing her home with the feeding tube still in if we need to -- but we will see how the next few days go, and keep our fingers crossed that it is the motivation she needs to start eating on her own again.

 

they have toys here too!

No news is good news? (Or just a busy week)

I wish there was more exciting news to share, but we are still here at CHEO (26 days and counting), trying to get through this recovery period.  The good news is that Elyse's respiratory virus has run it's course and her lungs have completely cleared.  The bad news is she's still in withdrawal and it really, really sucks.

the smiles are slowly returning

As we continue to wean her off the medications, each change in dose has been met with a variety of symptoms ranging from insomnia and irritability to sweating and vomiting.  We are starting to see her old personality start to return, but as she continues to be more alert during the day she is definitely needing a lot of hands-on attention and extra cuddles.

lots of cuddles

The biggest hurdle now is getting her back onto oral feeds.  We had worked our way back up to full-feed boluses every 3 hours through the NG tube, until she started having trouble keeping anything down and we switched back to continuous feeds to make it a little easier on her belly.  Today we will start shifting back towards bolus feeds and start again.

visit with Emmett

This has definitely been the most tiring stage of this journey so far.  Matt and I are doing 24hr shifts at the hospital, so we each get a chance to rest or catch up on things on our "days off".  There was talk of being able to go home this week, but that will all depend on how the next few days go.  Keeping our fingers crossed that the end is in sight!