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!

Mother's day

This Mother's Day was a little tougher than others, and rightfully so.  I think it's a difficult day for any mother to be apart from her child for whatever the reason -- a bittersweet reminder of how much they are loved, and how much they are missed.  But I still had a wonderful day, complete with early morning snuggles from Emmett, and afternoon snuggles from Elyse.  We had also stopped in for a quick visit with Emmett on our way to brunch, and he was happy to see her again.

Mother's day visit with my two little loves

 

peek-a-boo

 

Elyse even left me a little card with a new footprint, courtesy of yesterdays night shift nurses.  Amazing how much it has changed since the first set we got back in March!

 



 10 weeks old

 

Everyone is pleased with her progress over these past few days.  They are now increasing her feeds by 1mL every 3 hours (instead of every 6), which means she should now reach full feeds by the middle of this week.  There will still be a few more things to do once she hits that milestone: she will need to restart her iron and vitamin D supplements, the PICC line will need to be removed and she will need to transition back into an open cot.  She is also due for more blood work as well as her first round of vaccines (the one thing that goes by actual age instead of corrected).  So I'm not holding my breath yet, but thinking we may be about a week away (if all goes well).  Only time will tell!

So far so good

Yesterday was a very good day for Elyse.  Not only did she get to start eating again, but she has now officially surpassed the 5 pound mark!  They started her out on 6ml of milk every 3 hours, and will be increasing the volume by 1ml every other feed, so long as she continues to tolerate it well.  At that rate it will take about 10 days to reach full feeds, but that's ok.  Every extra millilitre is another step closer to home, no matter how long it takes -- even though she is starting to get a reputation for being the "old gal" in the nursery.

 

content after a little snack

 

what do you mean that's it for three more hours?!

Fingers crossed

It has been a quiet week so far.  The doctors ended up extending Elyse's antibiotics and bowel rest to 10 days, which is finally finished as of tonight.  The plan is for one more X-ray tomorrow morning and then resuming her feeds.  She will start with a small amount of fresh breast milk, and increase the volume slowly -- in fact, it sounds like it might take upwards of 7 to 10 days before she will reach full feeds again.  But I can understand why they want to take it slow and make sure she is tolerating both the milk and the volume.  Since she will still be supplemented with TPN, her PICC line will unfortunately need stay in for a little while longer -- but at least we will finally be moving forward again.  Fingers crossed this is the last bump in the road!

 

Did someone say food?  That's what I thought!

Wait, wait... and wait some more

Elyse had her follow up X-ray this morning, and the results came back inconclusive.  The overall picture is looking better, but there are a few areas of the bowel that the doctors can't agree on looking better or worse.  It sounds like they are all going to sit down tomorrow to discuss her case and plan the next course of action.  The good news (which the doctors keep reminding us of) is that she looks great and is not acting like a sick baby at all, so that is positive.  I just hate feeling like we are stuck in limbo -- let's make a decision one way or the other and move on.

all tucked in for the night

 

We had lots of nice visits over the weekend, including one from Emmett.  He was happy to see her out of the isolette but just kept wanting to pet her face.  We settled on stroking her blanket instead, and that seemed to be a good compromise.  I'm really looking forward to watching him interact with her at home -- he's going to be a great big brother.

 

so sweet

Patience

Elyse is two months old today!  And weighing in at 2130g, or 4lbs 11oz.  There was nowhere to stick her sticker today, so I had to improvise.

two months old

 

It has been a long week, but a good lesson in patience.  Elyse is stable and clinically doing very well, but the doctors are being cautious and taking things slowly.  Since she is going to be needing an IV for at least another week or so, they decided to re-insert her PICC line on Wednesday rather than having to keep poking around for new IV sites.  They had to take an x-ray to confirm the position of the catheter, and were able to get a glimpse of her bowels at the same time.  There was still some inflammation but it was starting to look better.

loves her hands above her head

 

The plan is to finish the full seven days of antibiotic treatment and bowel rest, and then re-X-ray on Sunday.  If the inflammation has resolved then we can talk about starting her back on a small amount of milk and then slowly increasing to ensure she tolerates it.  Realistically, it's looking like she will probably be staying at least another 7-10 days, which would bring us very close to her actual due date.  As eager as we are to get her home, I know she is where she needs to be right now.  It's just tough when there's nothing we can do but give it time.  We are trying to get as much extra cuddle time in as we can to give her (and the nurses) a break, but our visits range from out cold asleep, to calm and alert, to angry and unsettled.  I'm pretty sure she's had about enough of this too -- and I don't blame her one bit.

Hmmm... what kind of drama will I be able to stir up at home?