Emily’s Adventures and Milestones

Emily is now 14 weeks old today.

That’s just over 3 months.

Whoa.

Let’s just let that sink in for a moment….

14 whole weeks.

Happy Sad Jim

 

 

Right, so, rather than give you a big ol’ blog update on things, we’re going to give you a run down on some of Emily’s milestones and bunch of stellar photos with some captions on recent adventures! We thought about doing something for each one, but let’s be honest: ain’t nobody got time for that when they have a baby in the house!

 

MILESTONES

13 Week* Weight: 4.85 kg / 10.7 lbs

13 Week* Height: 60 cm / 23.6 in

Likes: cooing with mom and dad, hugs from mom and dad, seeing the world at the same level as mom and dad, having mom sing, smiling, eating, napping and nighttime sleep, stroller walks (most of the time), using the rattle, playing with hands, baths (sometimes – progress!)

Dislikes: being strapped tight into the car seat, being hungry, the feeling of falling, baths (most of the time)

*Growth tracker is based on last pediatrician visit with Dr. K. Because Emily’s VSD decreased in size so much, she decided Emily doesn’t need to check-in weekly but instead will do so every 2 weeks!

 

ADVENTURES

Emily’s First Photo Shoot:

Most babies are photographed professionally a few days after they are born, but because Emily was in hospital for the first 24 days of her life, we had to wait until she was just over 4 weeks old. Check out some of Emily’s photos below and more on the Diamondview Photography blog!

CLICK ON ONE TO SEE A LARGER SLIDE-SHOW SIZE OF THE PHOTOS
© DIAMONDVIEW PHOTOGRAPHY

 

Baby Movie Dates:

Every Thursday at 1pm, select Cineplex have ‘Stars and Strollers’: a baby friendly movie experience for parents and caregivers. The theatre has dimmed lighting, lowered volume, change tables/diapers/wipes, and a microwave for heating baby’s food. They also have 2 new movies each week to choose from. As a family, we all went to see Keanu. Then, Emily and I then went to see Captain America: Civil War the next week, and then just this past week we went to see X:Men Apocalypse. Landmark Cinemas also has something similar, but only every 2nd Tuesday.

 

Ottawa Comiccon:

Emily joined us for 3 days of Comiccon goodness! We were nervous bringing her to the event, as a) she was still only 10wks at the time and b) we weren’t sure how much we would be able to move around on the weekend with the stroller. We like going for the 3 days so that Friday can be spent exclusively walking the market hall with all the vendors. It’s a lower key day, so walking with a stroller is much easier. Additionally, we spend the entire Saturday and Sunday going to the celebrity Q&A panels. Emily was the darling of the Con and she wasn’t even in costume! The staff loved her (and us) so much, that they made sure to come say hi to us and chat with us at the back. We didn’t want to disrupt any of the other guests, so we made it a point to snag the very back seats for all the Q&A’s. Except the special “Ponds and Friend” special; we were front and centre for that one!

CLICK ON ONE TO SEE A LARGER SLIDE-SHOW SIZE OF THE PHOTOS

 

Toronto Field Trip Music Festival:

Just this past weekend, Jody and I took Emily on a trip to Toronto for the annual Field Trip Music Festival. We’ve been attending the festival since it’s beginning – 4 years ago – and realized the 1st year how family friendly it was! So many great activities for kids and just a really laid back atmosphere. This was Emily’s first big car trip too, and though she did great on the way down to Toronto, coming home was a whole other experience for the girl who hates car seats. Emily and I attended only on Saturday as Sunday was calling (and had!) massive rains – so much so, the festival closed down for a few hours while they monitored the weather situations in the surrounding area(s).

CLICK ON ONE TO SEE A LARGER SLIDE-SHOW SIZE OF THE PHOTOS

 

 

MONTHLY MILESTONE PHOTOS

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CAR SEAT FASHION

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Until next time, from us to you – be excellent to each other!

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© DIAMONDVIEW PHOTOGRAPHY
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The VSD Update

Oh, hello there everyone! I know what you’re thinking: “Guys! You said you’d update us all after Emily’s cardiology appointment at CHEO at the end of April – what happened!? How is she in general?! GIVE US SOME NEWS ON THE IMPOSSIBLE GIRL, DAMN IT!!” Well, as they say, time really does slip away from you when you have kids. Especially with a wee one!

 

So, where to begin … Let’s just go ahead and dedicate this post to Emily’s heart and the VSD, shall we?!

Emily had her post CHEO release cardiology appointment at her 2 month mark on 28-April. We were told she’d be there for a few hours as they needed to do both a heart ultrasound and an EKG in order to see how things were with respect to her VSD. Neither test hurt her or was invasive, though, if she could talk she’d tell you that the sticky pads that relay the information for the EKG were the worst thing in the world. It was annoying for her to have them removed after they got the reading, and she wailed quite a bit, but she was fine after about 2 seconds.

 

Following these tests, we were brought into a meeting room where we sat with Emily’s cardiologist to discuss the results. We were advised that although we all – Emily included – had been working hard to ensure she was gaining her necessary weight to help the VSD shrink or close – and that although she was showing no signs of ‘heart failure’ (read: pressure changes, NOT a heart attack), it was still large and hadn’t changed in size. To put things into perspective: her heart is the size of her fist – about 2 in / 5.1 cm – and that the VSD was found to be 0.6 in / 1.5 cm. We were also told that they found 2 other small holes at the top of her heart, but that these 2 small ones didn’t impact her or how her heart functions. The biggest kicker of it all was that they told us she would more than likely need to have open heart surgery to repair the VSD as the chances of the VSD shrinking at this stage were slim to none as it hadn’t changed in size and was over the 1cm mark. We then discussed 2 things: the next steps for Emily and the upcoming surgery.

The next steps for us were continue to watch and monitor her and ensure Emily still wasn’t showing any signs of heart failure (excessive sweating at feeds, flared nostrils, chest/abdomen skin stretching and pulling at her ribs as she’d be having difficulty regulating her pressures when she breathes, generally lethargic) and have her back to see the cardiologist at her 3 month and 6 month marks for follow-up ultrasounds & EKG’s. At these marks, the cardiology team would discuss as a whole if Emily needed to have her surgery earlier than 3 years of age. You see, the goal is to delay surgery until she’s about 3 to ensure her heart is larger than it is now to make it both a bit easier for the team to perform and easier for Emily to recover from. The surgery itself was described as ‘garden variety’ for the CHEO team – pretty much the easiest open heart surgery you could perform in pediatric cardiology, but open heart surgery just the same. To put it bluntly: they would open her chest, stop her heart and have a machine do all the blood pumping through her body while they repaired the holes. The 2 smaller holes would be stitched closed and the VSD would be patched with what is essentially Gore-Tex. Tissue could then grow around the patch and continue to grow as she grows, while the patch stayed in under the tissue acting like a base. We left the appointment on 28-April a little sad knowing that the hole was still very much there and that Emily would again need surgery. We were also a little scared because, and let’s be honest here friends: it’s open heart surgery and we had no way to know when that surgery may happen. If she took a turn where she was losing weight and showing concern, they would want to do the surgery sooner than later.

In the weeks that followed, we continued with Emily’s fortified (read: increased caloric total) feeds and kept seeing our pediatrician for our weekly weigh-ins and check-ups. Each week when we go in, her doctor would say how great she looked and how mature she was getting – and we could see it too! She’d go to bed for either her nap or nightly sleep, and she’d wake up looking different; more mature! She continued (and still does) to trend up when you chart her stats, but her weight is still in the low end (for Emily, it’s down in the 7th percentile) – which is totally normal for o-babies. Each doctor’s appointment has been the same so far … well, except this week. While in for her check-up/check-in, Dr. K said she noticed that Emily’s VSD sounded a lot louder since last week. She didn’t say much more as she knew we had our cardiology appointment the next day and that they’d see what was up with testing.

 

This past Thursday we were back at CHEO 3 month EKG and ultrasound. She did way better this go round after the EKG, and though we are not sure if it’s cause she knew what to expect and was like “Yo, guys – I got this cause I’m way more mature now!”, but whatever the case, she did really well. Emily then had her ultrasound and slept through nearly the entire thing – only waking at the end because it was close to her regular feeding time. We then went in for the results overview with her cardiologist and got some news we were not expecting to hear, nor was she expecting to give … the VSD shrank significantly! It went from 1.5 cm / 15 mm to 0.3 cm / 3 mm!!! You see, we’d kind of resounded to the fact that Emily would need to have surgery. Both her pediatrician and the cardiologist said that the chances of her VSD shrinking at this stage, due to it’s size was really quite a long shot. But our Impossible Girl did it again and astonished all of us! Her pediatrician thought that perhaps it got smaller but a) didn’t want to say anything to us about her theory, just in case, and b) had no idea it was THAT smaller! The analogy that both doctors provided for the louder murmur: think of it like an open door on a windy day. If the door is open all the way, you don’t hear the wind as much, but if the door is not as open, or near closing, then you really hear the wind coming through.

We will now continue to keep on doing what we’ve been doing – just living each day as a normal day, just with more fortified (higher caloric) feeds, and wait to see what her 6 month check-in with the cardiology clinic has to say. If all goes well, open heart surgery will be 100% off the table, but for now we wait.  Fingers crossed!

Emily’s Update!

First – the good news is: Emily is FINALLY home .. it’s been a crazy past couple of weeks so I’m sure you can appreciate why there has been a delay in our blog updates! But, let’s back up a bit and catch you all up on things, shall we?!

 

On Wednesday March 16, during the NICU morning medical rounds, the team advised that Emily would be moving to the pediatric ward. It caught us a little off guard as there was no real warning that Emily would be moving and they mentioned her needing to see an occupational therapist to observe and possibly help with how Emily was feeding (Side note: we never got to see the OT because the pediatrician assigned to Emily in the ward observed her feeding and said she was doing it all fine, but just needed to work on getting the full feeds. We have since found an amazing bottle system that has helped her actually consume her full feeds – and more as it limits the air she consumes and ultimately helps to minimize the painful gas she has. End of aside). The move notification was great news in the sense that it meant she no longer required 1:1 or 2:1 care, as the only thing stopping her from discharge was getting her off her NG feeds and doing proper feeds (bottle or breast), and ultimately she it was one step closer to her coming home. The thing that bothered us though was that it was also another layer of us having to wait to have her come home. We knew that there was nothing medically wrong with Emily, but that the staff wanted to ensure that she was continuing to gain weight. Additionally, this move is a BIG change for parents to have babies graduate from NICU to the ward. The staff are still top notch, but it’s a completely different atmosphere in the ward. It’s a lot more crowded, louder in both the day and night, and there is a bigger lack of privacy there as you share rooms with other patients/parents. There are other small things that are different – no personal breast pumps (you need to go to a small room away from your baby that Jody called ‘The Republic of Pumpistan’), no milk warmers (they use a metal cup and hot water, which at first we were like ‘whoa, whoa, wait – seriously?!’, but honestly, it’s what we are using at home now!), but nothing super deal breaking. Unfortunately, they didn’t have a room for us that day, so we had to wait until the next day to be moved. This worked to our advantage though because it gave me time to pack a bag in preparation for staying in the hospital with Emily 24/7 until she was released.

 

On Thursday March 17, we were told that they had a bed for us and as a result, we were given a tour of the ward by the social workers from both NICU and the ward. The tour helped to ease us into the change in atmosphere, but was still a little overwhelming as we had such high hopes that Emily would have been coming home rather than going to the ward. After the tour, we headed back to Emily in NICU where we gathered up our things and prepared for our impending afternoon departure. Once up in the ward, we were moved up into a room with a 6 day old baby and his parents. Now, the parents were quite nice and did give me full warning that they snored, but I was not prepared for how loud they were and how little sleep I would get (spoiler alert – NONE!). Emily was out like a light, but I on the other hand was not. I felt dizzy and sick from lack of sleep and realized I would be no good to Emily if I was lacking this much sleep. At home, I could trade off taking care of Emily with Jody – but at the hospital I was stuck in a situation that was far from even slightly ideal. The next day, Jody came in and together, with the help of one of our favourite residents, advocated for night passes. We had been told previously that one of the possible situations with being in the ward meant that we may have the ability to take Emily home at night, but then bring her back in the morning for continued monitoring. If NICU is like the Library of Archives where you can go look at your baby, but you can’t take them out, the ward is like a regular library where you can take your baby home, but just return them the next day!

 

Before we could head home on the night pass, we had to go over some important IMG_0400information about Emily and her health – including who to contact should we have any questions while she was home for the night – and figure out how to actually use the car seat we purchased. Like all new parents, the car seat situation is a serious right of passage! Truth be told though, between our entire NICU experience and the night passes, we had a really great transition into parenthood for that first night at home, so having the car seat be our most difficult experience outside of her health issues, we know we’ve got it pretty easy. (Side note: sure, we felt like part time parents for literally Emily’s first 3 weeks alive, but the whole hospital experience helped ease us into having her eventually home. Most parents get either a few hours or days at hospital, we were lucky in that we had an entire medical team at our disposal for any questions baby related, not just baby health related. End of aside).

 

Once we got our night pass and medication for Emily, we headed home.

Sitting next to her in that back seat was the best ugly cry I’ve ever had! Once home, Jody built Emily’s bassinet while I showed her around the house, then snuggled up on the couch. She slept like a dream that night (and continues to do so!) and we woke her up on the 3 hour mark, as instructed by the medical staff to both administer her reflux medication and provide her with her fortified breast milk feed.

 

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The next day, we got her dressed and headed back to CHEO for her to get checked out, weighed, and put back on the monitor system for her vitals. We didn’t mind so much as we ended up doing at the hospital pretty much exactly what we would (and do!) do at home: read and nap. I missed being at home, just because we really wanted to establish a proper routine for Emily, but also because I felt like I wasn’t being productive. Jody and I still felt like we were in limbo with Emily and home; especially since by the time we’d get home we’d be ready for her routine and not be in a position to make food or do laundry or any other household chores. The most difficult part though – the day we thought for sure we were going home, only to be told that they wanted us to stay in hospital for one more day. We still didn’t understand why we couldn’t continue to fortify and have her weight monitored by her pediatrician … but what was one more day as long as we still got to take her home at night.IMG_0414

 

Finally, on Wednesday March 23 – just in time for Easter and on her 24th day in hospital – we were discharged from CHEOIMG_0433 for good! We now have Emily home with us always, continue to take her to her scheduled pediatric appointments and have a dedicated ‘rapid response nurse’ for the next month. The purpose of the rapid response nurse is to further the transition to home and she comes in as needed, up to 3 times in 30 days and is available 24/7 for us to call as needed for all things Emily!

 

IMG_0471Just because Emily is home, doesn’t mean that we are going to stop updating our blog as Emily still has a little way to go to be 100%. On the day before her surgery, Emily’s heart ultrasound revealed that she has a perimembranous ventricular septal defect – also known as a VSD. Her VSD is of moderate to large in size and it was not diagnosed in either of her two in utero heart ultrasounds, however its presence did not hinder her omphalocele corrective surgery. We met with her dedicated CHEO cardiologist, Dr. Lai, who advised that the VSD will be monitored and followed up on by their team directly. We have an appointment with the Cardiologoy department at the end of April for another ultrasound and an EKG, to determine if it’s closed itself or needs assistance for closure. Many babies born with this defect of the heart grow out of it, thanks in large part to weight gain, and if not can obtain closure with the help of medication or surgery. Fun fact: Emily’s VSD was a source of wonder for the residents and student nurses she met at CHEO, who were amazed at her very distinct heart murmur.

We also want this blog to showcase Emily’s many adventures as she continues to grow and be all sorts of amazing, so, until the next time … !

 

 

Emily’s Recovery: 2 Week Update

It’s been 2 weeks since Emily had her omphalocele surgery and her recovery has gone really well! Her actual surgery date was Wednesday March 2nd – and from Thursday March 3rd to Saturday March 5th, the team gradually reduced the work that the respirator was doing for Emily and at the same time they gradually reduced the amount of Fentanyl that Emily was receiving for pain management. Her catheter and breathing tube were both removed on Saturday March 5th, which also meant that she no longer required a dedicated nurse (1:1 care) but could be monitored under 2:1 care. Her surgeon, Dr. Cowan, came to visit her in the NICU on Tuesday March 8th in the afternoon and was really happy with how Emily had been – and continues to be! – tolerating the repair. During his visit we got to finally see the surgical repair site without any dressing for the first time and we were so impressed with how things looked. Most omphalocele repairs result in the patient having no bellybutton – just a large scar – but Dr. Cowan was actually able to fashion a larger, semi-outtie looking bellybutton for Emily. As noted previously, the surgical team didn’t remove the extra skin ‘just in case’ she couldn’t tolerate the primary closure surgery, but made sure to fashion things in a way that would allow her to grow into the repair, and later on – if she wanted to – have cosmetic surgery for a ‘cleaner’ look. We love her belly-button-dooder; a name that my sister and I came up with for ALL belly-buttons when we were kids – it’s just fitting for Emily though!

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Left: Emily with her omphalocele compressed and ready for surgery (March 1st)

Top Right: After surgery (March 2nd)

Bottom Right: Repaired omphalocele still a bit swollen post surgery (March 8th)

 

There have been a few curve balls thrown our way, but thankfully nothing too crazy. Her Fentanyl course was completed on Saturday  March 5th, but the next day we IMG_0377both found her generally agitated and fairly inconsolable when we held her. After we left CHEO that evening, the resident on duty called us at home to say that Emily had been diagnosed as having withdrawal symptoms (sneezing, trouble feeding, tremors, sweating, generally inconsolable for an extended period of time). In order to manage this they began a course of oral morphine, which they would gradually step down by 20% every two days. Given this schedule, we calculated that it would be at least 10 days (from the start date) before she’d be fully weaned from her pain medication. The good news is that the morphine has definitely helped and her withdrawal symptoms (which are assessed by something called Finnegan scores) seem to be well in control right now. She still has her sweet, sweet (very small) morphine doses every 6 hrs, and she sometimes sleeps with one eye open – waiting for her next dose!

The last hurdle that Emily – and all NICU babies – must pass is learning how to fully feed. She was originally being fed by via IV through a PICC line in her foot, but after the surgery the doctors introduced milk fed through a nasogastric tube (i.e. into her stomach via her nostril). She tolerated this, so the doctors gradually increased the amount of milk in each feeding and decreased the IV intake to the point where the IV feeding completed on Thursday March 10th and the medical team removed the PICC line on Friday March 11th. Emily still needs to learn how to fully feed orally rather than via an NG tube – but we are getting there. What’s challenging her is that she seems to have narrow nasal passages – and since babies breathe almost exclusively through their noses, it’s hard for her to make the suck/swallow/breathe mechanics work if the breathing part isn’t working and one nostril has a tube in it. We all a really rough day Tuesday March 8th when the nurses tried twice to get her to feed and both times ended with her being really stressed, crying for over an hour and her respiration rate working itself up to the 110’s or even 120’s. Even when not stressed the nurses could hear her laboured breathing over the sound of the machines.

Luckily on Wednesday March 9th we had a nurse from the previous weekend return to her care and she had a novel idea for the breathing issue – after discussing with the neonatologist, the nurse moved the NG tube from her left nostril to her right nostril. Immediately things became 100% better for Emily, to the point where she started on the path to feeding that same day! It’s still a work in progress, but we know that Emily – like all other babies, NICU or not – will get there in her own time. The bigger challenge she has over most babies though is her excessive gas issue. The air in her belly causes her great discomfort when she is feeding or finished feeding. So, what would be a normal burp for a baby without an omphalocele is a bit more painful experience for Emily. She has even gotten to the point of waking up from a deep sleep, screaming in pain. The doctors put it into perspective for us: for 9 months she grew with part of her insides on the outside. Now that all of her organs are back inside her abdomen, they are all trying to function as intended, in the same space. Luckily, this is the only real ‘issue’ and they will all get there, but in due time.

The ENT (Ear, Nose and Throat) team came to see Emily today and take a look at her nasal passages – just to be certain that what she was experiencing was normal and there was no other blockages or anatomical issues. They indicated that although she had a ‘small’ nose and passages, she was in the normal spectrum and we have nothing to worry about and that over time – with her growth – this issue should resolve itself.

Emily’s NICU passport is getting lots of stamps! We have moved pods twice in the past week – we were in Green, but then moved to Pink (like a private room with a sliding door!) – but have since moved back to our original Yellow. None of the moves actually mean anything other than they are filling the pods in the front rather than the back for (low) NICU capacity reasons.

One of the questions we are being asked by our friends and family on a daily basis is “When is Emily coming home!?!” Unfortunately, there has been no indication as to what date she will actually be discharged on. Again, it’s really all up to how well she fully feeds at this point. She needs to feed on her own for a full 48 hrs before they will give her the ‘go-ahead’ to leave NICU. So, until then, Emily will need to stay in NICU for the time being. We are hopeful though that she will be home in no time at all … until then – please enjoy these photos:

Click on one to see a larger slide-show size of the photos:

From Yellow To Green

Today was a day full of accomplishments and surprises for our Miss Emily Oswin. We called the NICU first thing this morning to see how Emily’s night had gone. We were advised by the night nurse that Emily had a great night and slept well through the evening. She also advised us that they reduced the respirator to 20 breaths per minute and that Emily was filling in the rest herself.

 

We arrived into the NICU this morning to find that one of Emily’s nurses – Karen – did a lovely little name tag for Emily. Though this is just one small little detail, it meant the world to us to know that her nurses not only care of her physical well being, but also try to make us comfortable in the NICU pods. Sometimes it’s the little things that make all the difference when you are feeling far away from your baby.

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We were also advised that because of how well she was doing on – or more accurately, off – the respirator, they were definitely going to extubate today. We decided to stick around to watch the process as we were so proud of how well she was progressing. It was clear that she was uncomfortable with the tube in her throat, and so we were just as happy when they finally came out. The hardest part for her was when they needed to remove all the tape around her nose that kept the tube in place. Once they had the tape off though, the tube was out in no time flat and she no longer squirmed around trying to get it out of her body. She still has a bit of residue from the tape, but they decided to wait to remove it as she was so calm and happy once it was out that they didn’t want to frustrate her more than they needed to.

The nurses told us that because of the tube, her throat would be raw and her cries would be faint and raspy for the first little bit. They were right, but what we didn’t know is how much more like a goat she’d sound. Too cute for words.

 

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Jody then had the chance to hold her for about 30 minutes where she snuggled into his arms and settled into a well deserved nap. I took the chair in the corner and joined in the nap process. Why shouldn’t both us girls get some shut eye, after all, we’ve both had some medical procedures this past week!

 

 

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We decided to break for lunch while Emily slept in her pod. Once back, we were advised that she would be moved from her Yellow NICU pod to the Green NICU pod. The difference between the two is not only staffing purposes – she still gets one-to-one care for now – but also the size of the pod. They no longer require her in her ‘spa’ bed pod with the heat lamp and respirator so she would be upgraded to crib status!

 

 

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Before this could happen though, they needed to review her blood work as she was looking a bit jaundiced. While they waited for the results, it was my turn to hold Emily and Jody was able to give her some of the colostrum oral therapy. Once she was settled with the therapy it was then Jody’s turn to sleep in the corner. Emily soon also fell fast asleep – and let me tell you: nothing beats having your baby in your arms after 5 days of next to no snuggle times. It was pretty amazing watching her sleep like that all nestled in my arm for more than an hour.

 

 

Once we got the all-clear, Emily was officially moved into her crib and we then transferred her things into her new pod. Karen said that she would take care of moving it all for us, but we wanted to help the process. Parents are given the opportunity to help with all sorts of things in NICU and we want to be part of it all when and where we can. Additionally, because she’s now in a crib, we were able to finally use the take-home quilt that she was given from the nurses when she first arrived!

 

There are still a few milestones that Emily needs to hit before she can come home, so we can’t say exactly when she will be here with us. Could be 2 weeks, could be 2 months. We are certain that it will be sooner than later, but we aren’t setting our sights on a specific date as of yet. We need to talk to the doctors and surgeons about her progress thus far, and what the actual milestones they want to see on their end. We know that one of them is her ability to finally poop again after her surgery, and she did that today  – right before we moved her into her crib! This will – in all certainty – be the first and last time that Jody and I high-five for baby poop.

And Now Introducing …

Now that I’m out of the General Hospital and our baby girl is stable over at CHEO, we have some time to share our latest and most important update:

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Emily: Hard working, industrious, striving

I have always liked this name. In fact, it was one of the first names I thought of when I knew we were having a girl. Jody didn’t mind it, but preferred other names to this, so there was a lot of back and forth on what we would call her. We knew we wanted a classic name that would suit her in both her youth and beyond. Once she was born and in the recovery room at the General Hospital, Jody came back to check on me while I was being sutured. He said “What do you think of the name Emily?” I had told him “I always liked that name, but I thought you didn’t?” He advised me on what was going on in the recovery room and that not only was our Boolie’s preliminary nurse in recovery named Emily, but so was one of her CHEO transport team members. The same member, in fact, that allowed me to see and touch her before they took her over to CHEO. I knew that we’d finally found our baby’s name, but needed to really see and hold her first – just to be sure!

 

Oswin: “The Impossible Girl”, divine friend

From the get-go, our baby girl was what could only be described as ‘Impossible’. Not only was I someone that wasn’t sure that they’d ever have kids (thank you grade 9 health class birthing video!), but when we first found out about her omphalocele complications, we thought it would be next to impossible for our girl to make it. Once genetics came back clear, we knew that the big thing we were dealing with was the O-factor. Additionally, I’m a huge Doctor Who fan – so much so, that my wedding vows to Jody were inspired by the show itself. The latest companion to the Doctor was first introduced to us as Oswin, and later as Clara Oswin Oswald. She was known to the Doctor as ‘The Impossible Girl’ because she was to have been not possible as she’d met the Doctor in various timelines. She was a mystery to him as much as our baby girl was to us given the circumstances.

 

Now that we have her name and are feeling a bit more rested, we are delighted to share a few photos of our girl with you and will update with more regarding her actual omphalocele (before and after), but for now, please enjoy our beautiful Emily Oswin!

Click on one to see a larger slide-show size of the photos:

Tuesday, Wednesday – Happy Days!

TUESDAY

Our little girl was extremely popular: she had a visit from the surgeons, blood work done, a head and abdominal ultrasound, a PICC line inserted via her leg, a heart echo and visit from a cardiologist, an examination from the genetics team and another visit from the surgeons. Whew!

After a very rough start to the day, I rallied in the afternoon and Jody was able to bring me over to CHEO so I could officially meet our baby around 3pm. SO MANY TEARS OF JOY WERE SHED!! Unfortunately with all the different teams coming in and out I only had about 10 minutes with her in the afternoon, but we went back in the evening. Jody was adamant that I would be the first person to actually hold her (and he was the second) and I melted all over again! Best part: Neither of us dropped her! So far we’ve only observed diaper changes; no experience yet, but all in due time.

Jody stayed with me overnight here at the General on a pull out bed in my room and per my suggestion, he moved his car from the CHEO parking lot to the covered parkade at the General to avoid the impending snowstorm.

Still no name officially, but now that we’ve held her we feel pretty confident on the final three names! She’s “Neonate McDonnell” for the time being, but Jody likes to pronounce it “Nay-Oh-Not-Aayy” to make it sound more glamorous. And yes, I roll my eyes just as much as the nursing staff at that one …Classic Jody!

 

WEDNESDAY

She did indeed have her surgery today at 9am. They advised us that if all went well the surgeons would be able to get all of her outside bits back inside her abdomen and do a “primary closure”. If she didn’t tolerate it then they would do a “staged closure” over multiple surgeries.

I was able to again hold her this morning, but this time for 45 minutes until the anaesthesiologists arrived, after which they then asked if I wanted to carry her from her NICU pod to the doors of the OR. Child please, of course I did!!  It was hard to hand her off and I had a good cry but I knew our team would rock her surgery!

Just after 12:15, she arrived back into her pod from the surgery. Everything went really well – the surgeons were able to get all the structures that were in the omphalacele inside and perform the “primary closure” with a purse string closure. There was even some extra skin leftover, but the surgeons decided to leave it in place just in case it turns out that her body isn’t tolerating all of the extra bits being on the inside and they need to relieve things a bit. I cried tears of joy and then literally jumped up and huged both doctors. I may have over extended myself and my own surgical site, but the stinging pain was totally worth it!!

Right now and for the next few days she’ll be heavily medicated to keep her immobile and to manage pain. She’s also intubated and on a respirator for the next little while. She’s actually on a Fentanyl drip for pain management, so she’s officially a narco baby!

The doctors will observe our babe closely over the next few days and see how she’s doing, but for now everything looks great. We were immensely relieved when we heard from the surgeons about how everything went–it was amazing to see her with a regular tummy and no extra appendages. As Jody said to me, she’s a NOphalacele baby now.

The General hospital is letting me stay one more night because may I may have caused a bit of extra pain with those post-op high kicks – but also they said they know what we have gone through and are ok with me here so I can be close to our wee gal!

 

  • Ange, Jody & Baby Girl*

That’s “nay-oh-not-ay” – Jody

She’s Here: The Boolie’s Origin Story

I went to the baby store, said, “Fu*k it.” Doctor’s like “What up, what’s your budget?” And I’m like “Honestly, I don’t know nothing about babies.” He said, “I got the one for you, follow me.” – sung to tune of Macklemore’s ‘Downtown’

 

Our Impossible Girl was a little late to arrive (just like her dad!) but she’s here – she’s FINALLY here!

Name: still deciding, but we’ve finally narrowed it down!

Weight: 7.9 lbs

Length: 20.5 in

Time: 1.42 pm

Hair: lots, brown

Style: George Costanza; bald-ish in front / lots in back (like a baby mullet almost!)

 

We were scheduled for the c-section at 8:00 a.m on Monday morning, but were told the Saturday before that we would be pushed back to 10:00 a.m. to ensure that our teams were on site and ready for us at CHEO. I had gone in for a check up at the triage at the General on the Saturday before due to a bit of spotting and cramping. The good nurses there suggested I come in “just in case” and get checked out, given the O-situation our Boolie has going on. At that time, they told me I was fine, only slightly dilated (3/4 cm) and that I needed to take things easy to ensure that she didn’t make her debut earlier than scheduled.

I arrived at the hospital at 8:00 a.m. for the 10:00 a.m. procedure with my sister (I drove myself to the hospital, like a damn boss) and Jody and his sister arrived a little bit later. We were advised that things were slightly behind due to an emergency c-section that came in, however, what we didn’t know is that that meant we as the 10:00 a.m. were bumped back to 1:00 p.m. Yup – late just like her dad…! Jody put on scrubs in preparation to join me in the OR for our baby Boolie’s arrival and I got the entire spa treatment (read: shave and IV prep; which would not take as my veins kept blowing). Once they were ready to have us, my amazing nurse Sue wheeled me down to the doors, where I strutted into the OR room, because why wheel when you can dance!

 

Kidding aside, I was quite nervous once I walked through those doors. Sue helped to calm me, and my anesthetic team were flawless in guiding me the whole way. The entire surgical team was just beyond wonderful to help guide and support me during such an emotional and nerve wracking time. Once the epidural took effect and they finalized prep for surgery – including putting the curtain up – Jody was permitted into the OR room.  They told me that I wouldn’t feel pain (they were right), but that I would feel weird sensations of pulling and tugging (again, totally right) – like going to the dentist and having freezing; you know they are doing work, but can’t really ‘feel’ it. The c-section was quite quick and once they had her out we heard the best little gurgle cry in the entire world. A sense of relief washed over me knowing that she had some decent lungs on her (just like her mum). The doctor brought her around the curtain where I got to see her from about 6 ft away, and then they rushed her into the recovery room where a team of no less than 20 were in there to observe and learn from her O-factor. From what I saw, she looked like a little grey monkey (fitting as it’s the year of the monkey!) with LONG legs, and she was so much bigger than we had thought she would be!

 

After about 10 minutes, Jody was taken into the recovery room to officially meet our beautiful baby girl while they began closure on me. It took a lot longer than normal because I did end up losing a lot more blood than they would have liked (the average is 500 cc’s, but I lost 1200 cc’s) and they needed to be certain that all was well. In the meantime, Jody took some photos of our Boolie and brought them back to me so that I could see her up close (Side note: we are unable to add any photos / gif’s to this blog post as we are using the public computers in the family room at CHEO. End of aside). Jody came in to show the photos and told me she was feisty (like her mum) and hated all the attachments, poking and prodding (again, like her mum). Also, like her mum, they had to make a few attempts before they could get a decent IV line into her. The recovery nurse advised Jody that if he’d like to bring our sisters in to the recovery room, they could see her as there were no other babies in there. He came to ask me if it was ok, since I had yet to actually meet her and see her up close, but we wanted them to see her before she was taken to CHEO’s NICU. Jody went to find them while my team completed the closure surgery. I had a lot of difficulty with some of the medication and closure and so dry-heaving and nausea set in fast. My team was so great through the entire process, making sure I was kept comfortable and calm until they were ready to move me into my own recovery room.

 

The CHEO transport team arrived shortly after with their baby spaceship to ensure she was as comfortable as possible for her trip through the breezeways from the General to CHEO. They looked at her IV’s and worked up some of their own attachments for her before placing her in the incubator in the middle of her spaceship. In the end, none of it really mattered because she ended up pulling most, if not all, of the leads from her tiny body over the course of the trip. Seriously, this kid is strong and fierce! The transport team was kind enough to stop in at the recovery room and let me ‘officially’ see and meet my baby girl. I could only reach through and touch her wee hand, but she was as soft as what I imagine unicorns feel like. They let me see her for less than 4 minutes and then took her to CHEO where Jody followed.

 

Once at CHEO, the surgeons, transport team, NICU doctors, and nursing staff all had a huddle in her NICU pod where the transport team leader read out her brief case history since her birth. They then discussed her condition and their plans for treatment. The surgical resident who we met previously had what can only be described as THE biggest smile as he unwrapped the omphalocele and manipulated it to see its pliability. He had been waiting all morning to get things going for our baby girl! The surgical team then wrapped the O in mesh and rolls of gauze with a slight compression. Of course, our Boolie then kept kicking at it so that the dressing started coming off. The nurses then attached a foam block to her right hand where she had the IV line in to prevent her from pulling it out. The surgical team spoke to Jody and explained everything that was going on and advised that they would attempt surgery on her O on Wednesday morning. Jody signed a number of consent forms for the surgery and potential blood transfusion. Over the course of the next little while, she had a visit from the anesthesiologist to consult on the family history for the purpose of preparing her for her surgery. The nursing staff made sure she was warm and comfortable because her little feet were slightly purple in colour and quite cold (just like her mum). Jody was able to have some close up time with her and give her some wee pets on the head and hold her soother in her mouth, where he said she was crying just like a baby goat.

 

Once she was stable, Jody came back to my room at the Ottawa Hospital and showed me the latest photos and video of our baby girl sleeping. He also gave me a rundown of what had been happening while I was trying to recover. Jody went for supper and left me his phone where I watched a video of our baby Boolie on repeat for nearly 30 minutes before finally falling asleep for a bit. The hardest part of recovery in a situation like this is not being able to be there for your baby and wanting to stay awake ‘just in case’, so I was running on no food and no sleep when he finally came back, but it was well worth staying awake for just so I could find out what was going on. Later that night he went back to CHEO to check up on our girl and get a few more photos, videos, pets and kisses in before he went home for the night.

 

I had an AMAZING team at the Mother-Baby Unit of the Ottawa General that took such good care of me. (Side note: turns out my sister actually used to baby-sit my day nurse who was beyond wonderful to me. End of aside). They all knew of our situation and made sure that I was not only well taken care of physically in my recovery, but were always asking for updates on our girl. I also finally got food the next morning – and let me tell you, it was THE most glorious Rice Krispies and pancakes I have ever eaten (45hrs after my last meal as I was only permitted to have water and ice chips in conjunction with my IV).

 

UPDATE as of 02-March: our Boolie is in surgery now for her omphalocele (we will update on that very shortly!), but will be out soon be out back into her pod … until then (later this afternoon possibly or this evening), we want to thank you all for your kind words and support during this time!

 

Much love,

Ange & Jody

 

 

 

 

 

 

Nursery Rhymes

Our Baby Boolie might not be sleeping in her nursery anytime soon  – because of her immediate NICU time and then sleeping in her bassinet in our room – but her sweet nursery is ready when she is!  We couldn’t decide for a LONG time on what her room would look like, except to say that we didn’t want it ‘pink’.  Luckily, we found inspiration after going to the annual holiday PopUp Gallery and purchasing a beautiful piece of art….

 

I took these photos with my iPhone, so they aren’t the greatest, but you can get a sense of things.

 

Full panorama view:

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Curtains purchased from The Bay – part of the Steven and Chris Collection

 

 

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Our shelves and brackets are both from Ikea (EKBY LAIVA self and EKBY HENSVIK bracket). The shelves were painted to match the crib and the brackets were left as is.

The Dutailier glider rocker chair was purchased at Sleepy Hollow Canada. It was definitely more expensive than most glider rockers, but we wanted an investment piece that would eventually move into our living room.

The rug was the second thing we purchased in the grand scheme of things; it was the only one we could agree on and it didn’t look like a typical ‘kids’ rug. We were lucky to have found and purchased it from HomeSense.

Her shelves already have some pieces on them, including a few stuffies already received, a special figure from an extended family member, some special books, a retro Fisher Price Roly Poly Chime Ball, a handmade papier-mâché hot air balloon that a friend and I made for another friends bridal shower last year. It was just too pretty to throw away as we made the balloon from all sorts of old maps. The prettiest piece though is a painting that my dear friend – and illustrator extraordinaire – Claire Manning made for me when I moved away from Toronto nearly a decade ago. She does some beautiful work!

 

 

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Our 3-in-1 crib was purchased from Costco.ca – not only did they provide free delivery, but the conversion kit was included. Most retailers offer crib systems like this, but ‘extras’ will cost you.

The artwork above her crib was actually the first thing we purchased for the nursery and was the single piece of inspiration for the room. Title: “Good Company” by local Ottawa artist Alison Fowler.

 

 

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We were lucky enough to have previous home owners have a built-in closet and drawers made. The built-in drawers look to have been created in order to double as a change table, so yay for us! The change pad set was purchased from Costco.ca, and the diaper fixings are set-up ready to go when we need them. A friend gave me a great tip: foam hand sanitizer should be used and ready next to the pad rather than gel sanitizer because the gel can become clogged up in the dispenser and decide to shoot all over the place (read: your baby’s eye!)

 

 

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Top Left: mixed media art I purchased many years ago from Lucky Jackson at the New Ottawa Art Festival.

Top Right: handmade 3D art I made a few years back; made with a branch, wire and pearls.

Lower Left: Ikea OLUNDA picture

Lower Right: handmade Canada Day art made by my niece a few years back.

 

 

I also decided to make her a dream catcher for her window using a few simple items, most of which were purchased from Michael’s Arts & Crafts: the inside of a stitching hoop, wool, beads, waxed string and jewels from what used to be a light fixture – the larger crystals at the bottom were purchased at ReStore.

 

We are pretty excited for how it all came together these past few weeks – and to think, it all came from inspiration from one single piece of artwork!

 

  • Ange

 

April Fool’s in February

Well friends, we’re finally here! The last week before our Impossible Girl makes her grand entrance. Though this has been one crazy high-risk / first-time pregnancy, we’ve tried to find the humour not only in this whole process but where we can. So much so that we recently played a pretty amazing joke on my mom.

 

A little background before we begin …

First: Jody and I are both sick right now. Luckily, it’s just a nasty cold, and Jody can take medicine to fast track his recovery and I’m at the tail end of it. We’re definitely feeling a LOT better as the worst of it was over the weekend. During that time, I had just finished messaging my mom and sister about how ill we were and how I might not be able to call them over the weekend as I had a terribly sore throat and talking was not good for healing. I also advised that we desperately needed to get better so that we could make sure we could go see our baby Boolie as soon possible once she arrives, because as we’d been advised from the NICU team; if you are sick, you can’t go in.

Second: Jody’s cousin is now in Jamaica with his girlfriend. Jody made a joke to me saying “Let’s see if WE can join them on their vacation from 01-Mar!” and we had a good laugh at how ridiculous that would be. I said, “Wait – we NEED to tell folk this. Ohhhh, I know – MY MOM!”

 

The below is a word for word transcript of the messages between myself and my mom:

Me: You guys, guess what!?! We booked a trip to Cuba as of 01-Mar!! We got a smokin’ hot deal and we figure we can’t travel now but will be able to once our Boolie is out and since she will be in CHEO it’s perfect timing!! She will be at a hot spa and so will we! We are back on the 9th and should be ok to check on her then! xo
Mom: are you nuts?
Me: No, we are stoked!! CHEO can look after her – it’s win-win!! She will have the best care and we can have a break!
Mom: you can’t travel to Cuba after a c section the day before
Me: Salt water is good for wounds!
Mom: you are crazy both of youStanley Laugh Cry
Me:I love that you think for a second we are serious! We are laughing so hard I’m choking and crying!!!!
Mom: i was ready to go downstairs and tell mike i am going to court to get that baby away from, those two fucking idiots
Me: Totally worth it!!
Mom: screw you – you both have upset me something awful

:-PPPPPPPPPPPPPPPPPP

 

I called her right away to make sure she wasn’t too terribly upset. We all had a much needed laugh. I seriously nearly barfed from all the laughing and being so sick still. I promised her that I would not to play any April Fool’s jokes on her for the next 5 years. I made that promise, but that’s only because (and let’s be honest) this was probably the best trick to play on her in the history of tricks, and I’m sure our Boolie will do the same to us.

 

I love you mom – but seriously, if you (or anyone!) are foolish enough to believe for one hot second that we’d leave our new fragile baby without really seeing her, plus that I’d actually be in any condition to fly, well, you need to stay far away from your junk mail because I feel that there might be a few emails from a Nigerian Prince about his wealth and how he’d like to share it with you – some conditions apply!  Oh, and, you don’t have to worry about getting us back – our Boolie will see to that when she’s older … we are certain she’s going to be the best trickster!

 

  • Ange