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 … !

 

 

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