Limbo

I think Tom Petty said it best -- the waiting is the hardest part.  Waiting for this virus to run it's course.  Waiting for the antibiotics to kick in.  Waiting for her numbers to go up.  It feels like we have been stuck in limbo these last few days, with no big changes.  The bright side is that things haven't gotten any worse, but progress is slow.

The team hasn't made any major changes as of late.  Elyse is still sedated and on the jet ventilator, and the respiratory therapists seem to be happy with it.  She is also receiving regular doses of a drug called Pulmozyme to break up the mucus in her lungs and make it easier to suction out.  In order to help maintain an ideal body temperature, she is surrounded by a "Bair Hugger" forced-air warming blanket (I only just found out today that it isn't "bear hugger" like I always thought...although I still prefer that name, don't you?).

wrapped in a "bear hug"

Another thing the team is watching is her net fluid balance.  They would like to see her with a negative balance (i.e. more fluid going out than going in), to help "dry out" the extra secretions in her lungs.  She is already on a diuretic to help expel excess fluid, but another option being presented is to fortify her milk in order to maintain her caloric intake using a smaller volume of liquid.  Anyone who remembers our troubles with fortifier in the NICU will understand our hesitation, and so we are keeping that option off the table for now.

On a positive note, tonight saw Elyse's saturation numbers climb into the high 80's, and even 90.  Fingers crossed she is reaching the turning point, and her numbers continue in the right direction.

from top to bottom: heart rate, arterial blood pressure,

central venous pressure, oxygen saturation, respiratory rate 

One week

Today marks one week since we brought Elyse back to CHEO, and it seems like she is starting to get a reputation for being a little on the difficult side (if they only knew the half of it). You can tell the team is getting frustrated by the lack of marked improvement, and continue to try different things in the hopes that something will work better than the last.  All of her numbers are looking good, with the exception of her oxygen saturation which continues to hover in the 80's (ideally it should be in the mid- to high-90's).  One positive is that she is expelling carbon dioxide without issue, just not absorbing oxygen very well.

They decided to change the type of machine from high frequency oscillatory to high frequency jet ventilation yesterday, hoping that it may require less pressure and help to loosen the lung secretions.  So far she has not shown any real preference for one machine over the other, and her numbers remain the same if not a little worse.  Now they are talking about switching back to oscillatory, or even conventional ventilation, although also admit that it may just come down to giving her time.

          High frequency jet ventilator

In addition to the bronchiolitis and RSV, they have also found a few secondary infections which are being treated with antibiotics -- this poor kid just can't catch a break.  She keeps fighting the sedation and trying to wake up, which is great for a finger squeeze, but not great if she attempts to extubate herself.  For that reason they continue to adjust the sedation medications -- not just increasing the amounts, but also trying different ones too in order to try and minimize the severity of withdrawal she is going to experience when it comes time to wean off of them.

Round two (a.k.a. PICU is the new NICU)

If you hadn't noticed from lack of blogging, life got a whole lot busier once Elyse came home almost five months ago now.  It has been wonderful watching her grow and thrive, and most days her time in the NICU is just a distant memory.  That was, until last week.

Thanksgiving weekend

 

Having an almost-three-year-old brother in preschool means that Elyse has already had her fair share of runny noses and colds.  But when this one progressed from runny nose to fever and laboured breathing in the span of a day, we decided to take her in to the CHEO emergency room to be checked out (just for peace of mind, we said).

They obviously don't mess around with breathing issues, because after checking in at triage we bypassed the waiting room altogether and saw our first doctor less than 5 minutes after that.  Since her oxygen saturation level was low, they started her on oxygen and gave a few epinephrine masks to help open her airways.  She was admitted for the night, and continued to receive epi masks and suctioning every few hours.

the first of many epinepherine masks

 

The next day, Elyse continued to require support to maintain acceptable oxygen levels.  She fluctuated between loving the mask and falling asleep, to fussing the whole way through -- definitely not a happy camper.  Because of her rapid breathing, she was taken off feeds due to fear of aspiration, which certainly didn't help matters.  Testing came back with a diagnosis of bronchiolitis due to Respiratory Syncytial Virus (RSV) -- a common virus which, in most people, manifests itself as a common cold but hits babies and preemies much harder.

the one upside: no roomates

 

When it became apparent that current procedures just weren't cutting it, they decided to transfer her down to the Pediatric Intensive Care Unit (PICU) for more advanced support.  There they started her on a CPAP machine, which maintains a low level of air pressure to help keep the airways open and make it a little easier to breathe (she had used one on several short occasions in the NICU as well).  She responded well, but needed a small amount of sedation to stop her from constantly trying to pull the mask off her face.  The benefit was that she was finally able to rest comfortably, which we were all in need of.

back on the CPAP machine

 

In true dramatic Elyse fashion, we were supposed to be leaving the next day for a very dear friend's wedding in Guelph, in which I was honoured to be a bridesmaid.  With Matt's support and blessing I was still able to make the trip, while he stayed at the hospital and provided lots of updates.  I knew she was in the best of hands, and it was a joy to be a part of their beautiful day.

The doctors warned us that RSV is a nasty virus that tends to peak between days 5-7ish, which certainly seemed to be the case over the weekend.  As she continued to fight the virus and the secretions in her lungs made it hard to breathe, her oxygen saturation continued to drop.  It was decided to switch her over to a ventilator and give her even more of a chance to rest and recover.  During the procedure a small amount of air leaked into the chest cavity, which required the insertion of a chest tube on either side to help relieve the pressure.

pumpin' ain't easy

After a day on conventional ventilation they then switched to high frequency oscillatory ventilation, which is what she is currently on.  She is completely sedated and receiving a plethora of drugs, most of which I can not even pronounce let alone spell -- there are sedatives, muscle relaxants/paralytics, a diuretic, steroid, and antibiotic, to name a few.  At last count there were seven infusion pumps running and a large collection of wires and tubes  -- an NG and NJ for feeding/venting, two chest tubes, three monitoring probes, pulse oximeter and CO2 monitors, temperature probe, central IV line, arterial line and of course all the ventilation equipment.  When they say this virus is nasty, they sure aren't kidding!
 

her current setup on the oscillatory ventilator

(with a picture from Emmett taped to the monitor)

The good news is that the doctors remain optimistic that although she is on the sicker end of the spectrum, it is not alarming or unexpected and she should make a full recovery.  Right now it's just a matter of waiting for her to turn that corner.  It meant a lot to us having so many people thinking and praying for Elyse the first time around, if you have a few extra to send her way again it would be very much appreciated.  Hope to report back with a positive update soon.

Week one: home edition

Hard to believe it has already been a week since Elyse came home.  It has been a big adjustment, but we are slowly figuring it out and finding our groove.  She continues to make her requests known loud and clear -- the most common of which are a clean diaper at all times, perfectly warm bottle, and not being put down.  Ever.  But can you really blame her?  I have slowly started venturing into the world of babywearing (courtesy of the Ottawa Babywearing Group's wonderful "Babies of Peace Project"), and so far she seems to really enjoy it -- much like the kangaroo care we used to do in the NICU.

babywearing selfie

Emmett has done amazingly well -- he is a very doting big brother, and constantly wants to hold/touch/kiss/hug his sister.  In fact, the first night she was home I woke up around 2am to find him in our room, standing beside the bassinet, just staring in at her.  Later that same night when I was up to feed her, he came downstairs, rubbed sanitizer on his hands, and offered to "help Mommy".  Needless to say, it was quite heartwarming but we were all a little extra tired the next day.

brotherly love
 

Elyse has been maintaining a 3 to 4 hour schedule, similar to what she was used to in the hospital.  She had a couple days of mixed up days and nights, but that slowly seems to be getting better the as we try to keep her on a shorter schedule during the day.  She is eating well and, according to our kitchen scale, weighs over 6 pounds now!  It was a difficult transition at first to be without the monitors, but each day brings a bit more confidence.  In fact, she may even go a whole nap now without getting a little nudge to make sure she is still breathing.

Emmett makes sure his baby doll is well fed too

We have been laying low so far, and it has been nice to just be able to enjoy some time together as a family without having to schedule it around hospital visits.  Elyse has been out for a couple of medical appointments and walks to the park, but otherwise we are avoiding busy places (and associated germs) for a little while -- at least until she's a little bigger, and her immune system a little stronger.  Unfortunately, even after they come home, preemies are more susceptible to getting sick and complications from something as simple as a cold can send them back to the hospital.  And that is certainly a place we don't want to see any more of for a very long time!

enjoying the sunshine

So there you have it -- we have survived week one.  And despite the chaos, the sleeplessness, the noise and the mess, it has been amazing.  After everything it has taken to get here, we certainly aren't going to take a moment of it for granted!

happy to be home

 first family photo

Home sweet home

After 79 long days and nights, three different hospitals, and countless hours spent by her bedside, Elyse is finally H-O-M-E!  It is surreal, exciting and terrifying all at once.

you've come a long way, baby!

I have been writing this post in my head for a while now.  Anticipating this day, and wondering when (and some days, if) it would come.  The past 79 days have been a journey of faith, love and patience.  Days of hope and joy punctuated by days of fear and anxiety.  Moments spent willing our baby through spells and medical procedures, wishing we could shoulder the burden instead.  Months of making sure we were reachable 24-7, and that split second of panic every time the phone rang.  The drive that felt long on the best of days, and even longer when trying to beat the clock for the chance to hold, or feed, or do her care.  Meeting amazing nurses and doctors who showed outstanding amounts of care and compassion.  Celebrating each small accomplishment and struggling through the setbacks.  But above all, being thankful for the incredible gift of being able to watch one of God's tiny miracles grow and develop before our eyes.  I know I am a better person for it.

 

It is hard to even begin to thank everyone who has taken this journey with us -- family, friends, coworkers, neighbours, and complete strangers.  Thank you so much for all of the prayers, positive thoughts and well-wishes; for the stories of hope and inspiration; for reading the blog and the comments and likes; for the food, babysitting, cards, gifts, hugs, calls, texts, and emails.  Your support has been unbelievable, and it made all the difference knowing we weren't in this alone. 

 

And now, a new chapter begins.  We sure can't wait to see what big things this little girl has in store!

 

welcome home Elyse!

Almost there (a.k.a. one very long weekend)

It has been a couple of big days for Elyse.  I arrived to the nursery on Thursday morning to find a very happy baby with no more IV line who had just been tucked back into bed after a bottle.  I was a little confused because she wasn't due to be fed for another hour or so, until I found out that they decided to let her try feeding on demand.  Instead of the 40ish millilitres that she had been getting every 3 hours, she is now able to drink as much as she would like, as often as she wants (without going more than 4 hours between feedings), just like she will be doing at home.  Now she takes about 65-70mL each feeding and then settles back into an almost 4 hour sleep -- and is so much happier for it!

 

happy baby

The doctors are being cautiously optimistic and will observe her over the weekend to make sure she continues to tolerate her feedings and gain weight.  If all continues to go well, it looks like she could be home early next week.  Her weight gain had started to slow over the last few days (while still on restricted feedings), but last night she was up almost 50 grams!  Amazing!  She is obviously a fan of the all-you-can-eat buffet, and is now weighing in at 5 pounds 5 ounces.

room with a view

 

She was moved into the front room last night, which tends to be the older babies who are on their way out.  Having been down this road once already, it is hard not to react with guarded excitement, but it feels like she is so ready this time -- we all are.  Even so, I don't think I'm really going to believe it until we are driving away with her strapped in the back seat.  And even then I'm still going to have to pinch myself.  I think this may be one of the only times I'm going to be wishing that the weekend would go by quicker!

 

big blue eyes

Due date

Today is Elyse's original due date, meaning she is now 40 weeks old!  It also means that her corrected age rolls over to "0" (I sure wish I could have done that to a few of my birthdays too!).  As of 6am this morning she has reached full feeds again, and tolerating them beautifully.  It's amazing how much development takes place over just a week or two -- all of a sudden she has perfected the suck-swallow-breathe technique, and doesn't need any help pacing herself or remembering to breathe anymore.  In fact, these past few days she would have downed her whole bottle in about 30 seconds if we had let her.  When I try to interfere I can almost feel her saying "Mom, I've got this! Back off!"

happy due date Elyse!

She was moved back into an open cot today, which is nice.  She has outgrown most of her preemie-sized clothes, so we're moving up to the newborn ones -- yay!  We are finding that she is starting to have longer stretches of being awake and alert, which is more typical of a newborn.  She also loves her cuddles more and more, and will often protest when we try to put her back to bed.  I just cannot wait until she is home, and we can interact with her as often as we want, instead of fitting it into the small blocks of time that we can be with her.  I have a feeling she isn't going to be put down very much!

back in an open cot

So things are positive, but we are still in "wait and see" mode.  The doctors have not made any discharge plans as of yet -- they want to monitor her for the next 24 hours, to make sure that she is tolerating her full feeds ok.  Hopefully tomorrow they will have a plan for the next few steps... and hopefully it will include the ones out the door!