Khloë: 10 months old (46 weeks)

I took this photo at the end of the week when we were home from CHEO:


46 weeks (October 21)

46 weeks (October 21)


Khloë’s Oma bought that adorable ballerina skirt for her before she was born. Loved seeing her finally get to wear it!


Meeting baby Mia (iPhone)

Holding my new niece (iPhone)

All the girls with Khloë

Like the previous post, there isn’t much I can write here since I’ll be talking about the majority of the week’s craziness in a separate post. We were discharged from the hospital late Wednesday afternoon and then spent Wednesday to Friday chilling at Rogers House, getting Khloë used to her new Trilogy BiPap ventilator. We were allowed to leave anytime on Friday. The great news is that my sister-in-law, Serena, had baby #2 around 4 am Friday morning! So after we packed up our load of stuff we drove over to see her at the hospital. Khloë got to meet her brand-new cousin, Mia! The above pictures were taken on my iPhone as I hadn’t packed my Canon 60D. New rule: always pack camera even if we assume we will only be away for one day because that can change in an instant!


Pretty girl

White dress for church

Rock n' roll sista

Of course on the weekend I had to do some fun photo shoots with Baby Girl! After almost a week and a half away from home, I went a little camera-crazy. But that’s okay! Nothing eventful happened during our first weekend home with the BiPap ventilator. Khloë seemed to have adjusted to it alright.

SMA: Khloë’s gastrostomy surgery

On Wednesday, August 27th, Khloë was scheduled for gastrostomy surgery. The surgery was planned proactively because we know that eventually, as part of the progression of Spinal Muscular Atrophy, she will lose her swallow and require a new way to be fed adequately.

We found out Tuesday afternoon the date and time of the G-tube surgery. Luckily we had most of our stuff already packed. Before we left, we received a couple phone calls: the first one changed the surgery time from 8:30 am to 10:45 am in order to snag a room in the ICU, and the second was just to confirm we understood Khloë’s fasting guidelines. When we arrived in Ottawa, we checked in at Roger’s House and spent the evening playing with Khloë and watching Netflix.

The following morning we were up early. With a surgery time of 10:45 am, Khloë began fasting at 6:45 am. We headed over to CHEO to register Khloë and then waited around in a special room where no one is allowed to eat or drink. The movie “Frozen” was playing for the few kids in there. Even though she was starting to be hungry, Khloë surprized me and didn’t fuss too much.

Finally, at 10 am, we were seen by a nurse. Khloë weighed in at 15 lb 13 oz. We dressed her in a pair of pink striped infant hospital pyjamas. She was then given a dose of Tylenol. The surgeon, Dr Bass, came in and spoke with us about the surgery. I gave Dr Bass the SMA protocols for surgery; he actually read them over and did his best to set our minds at ease that everything would be fine. Dr Silver, the anesthesiologist we had seen on Friday, also popped in to see us. By 10:30 am we were being led to the OR and had to say goodbye to Khloë. It was so hard to hand her over to the nurse. I gave her lots of kisses and told her we would see her when she woke up. She had no idea why Mommy was handing her over to a perfect stranger, but she wasn’t too upset about it.


Hospital pyjamas (iPhone)

A nurse brought us to the waiting room. I asked if there was a room I could go to in order to pump breastmilk privately. I had a cooler bag and ice packs with me and a single electric miPump. I left Jordan in the waiting room and followed the nurse to the Ronald McDonald ICU waiting room. I was given a special pass to use the waiting room. Inside there was a Lactation Room with bottles for milk storage. I used that room numerous times that day!

After the longest hour and a half of our lives, Dr Bass came to get us at 11:55 am. He assured us that surgery had gone smoothly and so far Khloë was doing well after extubation. He brought us to the Ronald McDonald ICU waiting room and told us to wait there; we would be allowed to see our daughter in about 45 minutes, or when she woke up.


Sleeping angel (iPhone)

When we were finally allowed to see her, an hour later, she was still sleeping peacefully. She had opened her eyes a bit earlier and cried a little before going back to sleep, one of the nurses told us. Seeing her face after surgery was heart-wrenching; she looked so angelic but I still felt terrible that she had gone through such a surgery. I wanted to scoop her up in my arms, but couldn’t. Lots of different wires were attached to her. I noticed that her O2 saturation level was hovering around 96 and not her usual 98. Throughout the afternoon her sats would vary from a low 92 to a mid-range 96. I hoped it was just an effect of the surgery.

When Khloë opened her eyes and saw Jordan and I, she pouted and cried, but quickly stopped, smiled, and fell back asleep knowing we were right there with her. Off and on she would wake and sleep. Around 5:15 pm she was moved to another ICU room where she and I would spend the night.


After gastrostomy surgery

Eating the pulse ox cord

The RN assigned to Khloë’s care, Karen, was amazing! We loved her. She was friendly, helpful, and chatty. She even advocated for us when we were getting concerned about Khloë’s continued fasting–it’s dangerous for an SMA child to fast longer than 6 hours, and 8 hours was really pushing it. Muscle breakdown occurs much quicker in SMA kids and I was worried she would lose some of her strength if she fasted too long. Dr Bass said that normally a gastrostomy patient wouldn’t be given any food, other than glucose through IV, for 24 hours after surgery; however he would allow Khloë to be given breastmilk 8 hours after the surgery.

At 7:30 pm, just shy of a 13-hour fasting period and many conversations with Karen about the importance of giving our daughter nutrition as soon as possible, we were given the go-ahead to feed Khloë expressed breastmilk orally, by syringe. All she managed to drink was 10 ml, a ridiculously tiny amount, but it was something. She was tired and didn’t want to spend the energy trying to drink from a syringe.

Jordan and I left her in the care of the night nurse and walked over to Ronald McDonald House to make dinner. Once we saw Khloë after surgery, Jordan had moved our belongings from Rogers House over to Ronald McDonald House. We made Kraft Dinner and chicken noodle soup.

At 11:30 pm, Baby Girl managed 30 ml of expressed breastmilk (EBM). It took an hour and a half to get that much into her; syringe-feeding is difficult! I could tell she was hungry but the doctor didn’t want me to give more than that amount in case her stomach expanded too quickly. I continued to ask if I could nurse her, but because there is no way to know the exact amount she would drink that way, Dr Bass said “Not yet”.

By early morning, I was finally allowed to breastfeed! My little girl was starving–and probably thought she was never going to get to nurse ever again!–and she drank for 25 minutes straight.

We left the ICU on August 28th and were moved to another wing. The nurses we had were great, but the ward was very noisy and Khloë (and Mommy) had a hard time sleeping. We hoped to go home as soon as possible because it was Labour Day weekend coming up.


Doing great after surgery (iPhone)

Hospital set-up

My little trooper

Her IV was removed August 29th since she no longer needed the extra glucose. The extra fluid was causing her diapers to leak everywhere. She had begun to feed by G-tube the night before. I would breastfeed her and then we would give a 2 oz supplement of EBM by G-tube with the Kangaroo feeding pump. She tolerated her new feeding schedule very well.

After a frustrating discussion with two dieticians and a meeting with Dr Bass, we came up with a temporary diet solution. The main concern was that Khloë’s weight was down compared to our previous Neuromuscular Clinic visit; she could not be discharged until she gained weight. We decided that I would allow Khloë to nurse and then tube-feed 2 oz EBM every 3 hours. While she was being fed by G-tube, I pumped milk with the hospital’s Medela. Overnight she was tube-fed Enfamil A+ formula for extra calories. My heart broke a little when we started that first formula feed, but I understood the benefits.

By August 31st, her weight had gone up to 16 lb 5 oz. The general surgery team was satisfied with the weight gain and discharged Khloë into the care of Rogers House. Our rental Kangaroo Joey enteral feeding pump and supplies arrived and we moved out of CHEO and over to the relaxing, stress-free atmosphere of the family suite at Rogers House. It sucks that we were stuck in Ottawa over the long weekend, rather than with family in Kingston as we had originally planned, but there was no point going home since Khloë had Neuromuscular Clinic in a few days’ time. We were also given a few cans of Enfamil A+ concentrate to get us through the long weekend!


Chillaxing at Rogers House

Happy girl

Before we were allowed to leave, we had to be confident with changing Khloë’s G-tube dressing and with enteral feedings. I think Jordan was much more confident than I was, but the hospital environment was stressing me out too much to really feel like I knew what I was doing. As soon as we were in our new location, though, I was able to set up feeds by myself!

We are so thankful that our daughter got through her first surgery with no ill-effects! She has so many people praying for her and sending positive thoughts; we appreciate this so much. Khloë is such a sweet, special girl. Anyone who meets her instantly falls in love! In the words of the anesthesiologist, who made a special visit to see Khloë before discharge, our little girl “captures hearts”.

Khloë: 9 months old (39 weeks)

Khloë turned 9 months old the day after her “week” began:


39 weeks (September 2)

39 weeks (September 2)


The majority of this week was spent in Ottawa at Rogers House for recuperation. The palliative care home always treats us well and everyone is so loving toward Khloë. We cared for her ourselves but the nurses still popped in during shift changes to say hello and to see if we had any questions. Jordan and I realized that once we were away from CHEO our stress levels dropped!


Purple girl

Playing with pearls

We came home Thursday and it was such a relief! Khloë must have missed all the familiar things of home because she had the most wonderful smiles for everything. When I put her on the change table, she looked up and gave a big grin to the photos of her cousins above her head.

Oh, and my little girl has her first tooth!

Khloë: 8 months old (35 weeks)

Here she is in all her 8 month old glory! 🙂


35 weeks (August 5)

35 weeks (August 5)


Oh, I remember when that headband was a little big on her…

A representative from Community Care Access Centre (CCAC) came to see us this week. Tim introduced us to the program and explained what CCAC can offer Khloë: a nurse to come and make sure we are using the equipment correctly (suction, pulse ox, CoughAssist, etc); shift nursing if needed (we aren’t at this point in her care yet); respite care; an OT, PT, and dietician to also come to our home; and when she’s old enough a speech therapist. Tim said he would write the paperwork that will qualify Khloë for Enhanced Respite Funding, which is a huge relief to us.

On Wednesday Khloë and I finally made it back to Prenatal Nutrition. I think it had been almost a month since we were there. It was so nice to see the girls again and I couldn’t believe how big all the babies were! And we found out that Chantel is 6 weeks pregnant!


8 month collage

8 month collage


A nurse, Betty, came on Friday to review suctioning with us and she evaluated Khloë’s chest. Her lungs sounded clear at the time and it turned out we are using the suction machine correctly.

Khloë’s little friend Raylyn turned 1 year old on Saturday! We made sure no one was sick before agreeing to go, and am I ever glad we did. There was a ton of amazing food and the kids did great with Khloë–she didn’t get mauled too much! Daddy even snuck her a cupcake and she enjoyed licking all the pink icing. 😉


Blue headband

Beautiful grin

Oh those eyes

On Sunday we packed up the car again, drove to Ottawa, and checked into Rogers House where we would be staying the night. What I love about Rogers House, the palliative care building, is that it’s located directly behind CHEO, the staff are friendly and adore Khloë, it’s free, and parking is included! That definitely helps us out since we make so many trips to Ottawa. So far we haven’t had any issues getting a room when we need one, but they are limited.

Monday morning we walked over to the hospital and met with Carlie, the respiratory technician. She showed us the new model of CoughAssist (E70) and trialled it on Khloë. Baby Girl really did not like it! I don’t blame her, as I’m sure it feels weird, but it’s something she will have to get used to. The machine simulates a cough by using pressures on inhale and exhale, which will help to clear secretions (saliva, mucous, etc) from her lungs. Since Khloë can’t inhale or exhale upon command, we plan on using the machine in the beginning just on inhales to exercise her lungs and keep them healthy. Carlie put in the order and we should have CoughAssist and the pulse oximeter by our next appointment in September.

After that appointment, Jordan and I registered at the lab and had blood taken for genetic counselling.

Khloë: 7 months old (30 weeks)

Sorry for the late updates! We were away for a week and then had company over my birthday weekend. Trying to play catch-up before we head away for 2 and a half weeks!

My girl turned 7 months old in the middle of the “week”:


30 weeks (July 1)

30 weeks (July 1)


Canada Day was not eventful; we did nothing other than a mini photo shoot. Khloë was in bed early and wouldn’t really understand the concept of celebrating Canada at her age.


Canada Day 2014

Canada Day!

On Thursday we packed up the car and drove the 3 and a half hours to my mom’s cottage. We got settled in the guest cabin, set up Khloë’s bed and the camera for the monitor, and then enjoyed the fresh air and beautiful view over the lake. It was so nice to get some relaxation time in and it was just as wonderful to see my mom! Even though most mornings she was awake at 6:30 am, I was pleased with how well Khloë adjusted to being away from home for a longer period of time.

Friday we took Baby Girl to visit my tante and cousins. Khloë had her first ferry ride!


First ferry ride

First ferry ride


And Saturday was the Great Summer Spectacular BBQ for Ashe’s 3rd birthday and Khloë’s 7 month “half” birthday. The cottage was a happenin’ place that day! So many people came out to celebrate with us. I plan on writing a separate post about the birthday bash. We spent the following day winding down from the crazy party and enjoyed hanging out with my brothers and sisters. My brother Mark, who lives in Newfoundland, flew down for a few days with his girlfriend. Khloë has finally met all her uncles!


New sunglasses

To end a great week, on Monday we drove to Ottawa and checked in at Roger’s House (CHEO) for our 3 day stay.