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!

Movin' on up (to the 4 East side)

It has been a busy (and tiring) few days.  Elyse was cleared to leave the PICU on Sunday, and was moved up to the "4 East" recovery wing that afternoon.  Her first few days off the narcotics went as well as we could have hoped -- she was quite dopey for the first 24 to 48 hours, but the fog slowly lifted as she continued to become more alert and focused.  

 

Her biggest withdrawal symptom over the weekend was insomnia and restlessness -- even though she was exhausted, she could not keep her eyes closed for longer than 30 seconds.  But despite not sleeping, she was quiet and did not seem to be in any distress.  The team continued to try and optimize the timing and dose of each medication, in order to keep her comfortable but not needlessly over-medicated.  Unfortunately, despite her orders being written out and transferred along with her, her Sunday evening dose of Clonidine was missed.  This resulted in an extremely long and miserable night for everyone.  We did not find out about the error until the next day, but needless to say, it will not be happening again!

can I just go home already?!

 

Elyse finally started sleeping again on Monday, and we are continuing to notice small improvements each day.  Where yesterday she was very sensitive and reactive to noise, today she has been much calmer with less of a startle.  We are figuring out what she needs and how to stay ahead of her withdrawal before the symptoms get out of control.  It is a heartbreaking thing to watch her go through, but one of us is always with her and we are doing our very best to keep her as comfortable as possible.

eight months old

(and catching up on some much-needed sleep)

 

Aside from the withdrawal, her recovery is going very well.  She ended up only needing supplemental oxygen for two days, and is back to breathing room air again.  Her PICC line and ECG probes were removed today, so the only tubes and wires left are the oxygen saturation monitor and feeding tube.  The occupational therapy team is coming to visit her tomorrow to ensure she is able to start oral feeds safely again, and there is no residual damage from the breathing tube.  We still don't have any idea how much longer she may need to stay, but at least progress is being made.

No tricks, just treats!

Halloween turned out to be a pretty magical day after all.  For starters, it felt like the whole hospital showed up in costume -- from the nurses and doctors, to volunteers and patients.  I know I certainly wasn't expecting morning rounds being presented by Snow White, a cat, and Kanye West, but it was pretty fun to see.  There were also stations set up all around the hospital for the kids to go trick-or-treating for toys and treasures.  You can tell everyone goes out of their way to make it a fun day for the kids, despite their not-so-fun circumstances.

Just another day at the office

Elyse had another great day too.  Although she has taken her time getting through the worst of this virus, now that she's on the other side of it she really seems to be raring to go home!  Her team was really impressed by how well she had tolerated the weaning of ventilation pressure and medication overnight, and decided to go ahead and extubate a day early.  She handled the procedure like a champ -- in fact, the worst part was probably peeling the tape off her face (I have a feeling we will be scrubbing that sticky residue off for a while).  Once she was settled, we had our first cuddle in over two weeks, and it was amazing!
 

Best feeling ever

 

I made it back home last night in time for some trick-or-treating with Emmett the fireman, and then it was Matt's turn for some much-needed cuddles with Elyse.  Now that she is starting to wake up, we will start staying with her around the clock again.  Thanks to the wonders of FaceTime, Emmett can still get his goodnight kisses from the hospital too.  He has certainly been a trooper through all of this, although his last request before bed is always to scroll through pictures of his baby sister.  Hopefully it won`t be much longer until we are all under the same roof again!

Happy Halloween!

cuddles with Daddy

 

Today they were also able to remove the arterial line as well as both chest tubes, which should make things more comfortable for Elyse, and certainly much easier for cuddles.  She has been becoming more alert throughout the day, but you can tell that she is still pretty dopey and often quite agitated, which could be a sign of withdrawl.  They have now switched her over fully to a non-narcotic medication, and will start to wean that one as tolerated.  Tonight I was encouraged by the fact that she was quite a lot calmer than this time yesterday, and was also able to maintain eye contact for longer periods of time.  Let`s home this trend continues and she is back to her old self in no time!

 

Whoa...that was some nap

Two weeks in ICU

Today marks two weeks since Elyse was moved to the ICU, and it feels like we are slowly making progress. The nitric oxide was discontinued on Tuesday, and Elyse tolerated it very well.  Yesterday they decided to try switching her back on the conventional ventilator, and that transition went well too.  The next few days should involve slowly weaning down the ventilation pressure until she is doing most of the work on her own, and ready to extubate.  On rounds today they were aiming for Saturday, but we all know a lot can change between now and then.

it takes a village...

 

Another thing that they are starting to wean off are some of the drugs that have been keeping Elyse sedated (Fentanyl, Ketamine and Medazepam, to name a few).  Unfortunately, because she has been on some pretty potent narcotics for an extended period of time, she runs a high risk of going through withdrawal from them.  The doctors have started her on a new drug (clonidine) which will help to ease some of the withdrawal symptoms, but it may be another long road to navigate.  We will just take it one day (and one challenge) at a time.



little friends keeping watch

MAPs, PIPs, and PEEPs...oh my!

I'm not exactly sure what I expected Elyse's recovery to look like, but I naively imagined something along the lines of "numbers are up, tube's out, let's go home".  Not even close.  We have now hit day 11 of intubation.  That's eleven days too many without a smile, or a snuggle, or even a glimpse into those beautiful blue eyes.  It is breaking my heart and we still don't know how much longer she will need to stay sedated.

                     a new friend

I think part of the problem is that we have always had her oxygen saturation numbers to watch as a reference of how well she was doing.  Now that those numbers have stabilized, the focus has shifted to the ventilator and out of our comfort zone.  The respiratory therapists (RTs) are great at trying to explain the ins-and-outs of the machine, but hearing all about mean airway pressure (MAP), peak-inspiratory-pressure (PIP), and positive-end-expiratory-pressure (PEEP) is enough to make your head spin.  Because of this, even though there is progress being made, it feels to be going very slowly.

The good news is that the RTs are happy with her progress, and are almost ready to switch her back onto the conventional ventilator, which is one step closer to extubation.  But first, they are going to trial Elyse completely off the nitric oxide today, which was used to help dilate the blood vessels in her lungs and increase blood flow.  In order to wean her off it completely, she will be given a dose of sildenafil (yes, Viagara for babies), to encourage her body to kick start it's own production of nitric oxide again.  If she tolerates this well, it is a good sign that her lungs are recovering -- fingers crossed and prayers being said that she is ready.

               hey NO, it's time to go!

Making progress

It seems like Elyse has finally turned the corner.  Her saturation levels remained in the mid-90's all day yesterday, and have been holding steady.  She is still on the jet ventilator, but they are starting to turn down the supplemental oxygen and ventilator settings to see how she does with less support.  Her oxygen levels have already been reduced from 100% to 40%, which is good progress.  Sounds like the next step will be to switch back to the conventional ventilator before they extubate -- but we may still be a few days from that.  She will dictate how fast or slow any of these steps will happen.

                   kisses for his sister

Emmett came in for a visit today, which I think was helpful for him.  You can tell he misses his sister, but we are trying our best to help him understand.  Pretty sure the highlights were the bubbling drainage machines and the urine bag!

                     ohhh, what's that?

We are so appreciative of all the positive thoughts and prayers being sent our way.  I found out that on her worst day they were seriously considering putting her on an ECMO machine (extracorporeal membrane oxygenation -- basically a lung bypass), and am so thankful that she turned when she did and it didn't get to that point.  We still have a long way to go, but at least she is finally heading in the right direction!

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!