Oliver’s trip to the Agriculture & Food Museum


Agriculture Museum

On July 4th we headed to Ottawa for a visit to the Agriculture & Food Museum. We were supposed to meet up with another SMA family but unfortunately one of Shawnna’s kids was sick and she had to cancel. We decided we would enjoy the day anyway and show Oliver the animals at the farm!


Agriculture Museum

Agriculture Museum

I slathered sunblock on Oliver, got him comfy in his Bugaboo Donkey, and on we went! We had taken out a museum pass from our local library so admission was free. I encourage everyone to do this! You can have a fun day out with the family for free. 🙂 Oliver was 8 months old for this trip.


Agriculture Museum

Oliver got to see horses, cows, goats, and pigs! A huge cow moo’ed right in his face and I thought Oliver would cry but he just watched the cow. I think he was very curious. He was amused by the rambunctious goats and loved looking through the window at the piglets.


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Agriculture Museum

Agriculture Museum

Agriculture Museum

Oliver’s Aunt Serena and two cousins, Zoe and Mëa, met us at the farm later in the day. We spent some time exploring the tractors together and then we had to leave to go check in at Rogers House. I think Oliver enjoyed exploring the animals and being out in the sunshine.

Oliver’s trip to the Aviation Museum


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The above is a super adorable picture of my clone babies! 🙂

On June 7th we arrived in Ottawa at CHEO in time for Oliver’s appointment with General Surgery. We waited an hour before we were called in; they were running behind. The g-tube nurse was training another nurse so the trainee did the tube change. She removed Oliver’s temporary PEG tube and inserted the measuring tube. Oliver was not impressed with this at all; he got very upset and I felt bad, but the tube switch needed to be done now that the stoma was healed. I did my best to comfort him and rocked him to sleep while Jordan went down to the pharmacy to purchase a new Mic-Key button (12 French, 2 cm). Over $200 later, the button was inserted and we were finished for the day! The nurse showed us how to do the insertion so that in 6 months’ time we can do it ourselves. I’m actually nervous about that, as we never did a tube change with Khloë.


Superman Baby

Mic-Key button

We stayed overnight at Rogers House, the palliative care facility. The following day, after packing up, we drove over to Ottawa’s Aviation & Space Museum and spent a couple hours wandering around there.


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Aviation

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Aviation Aviation

The museum was a nice way to end our trip to Ottawa!

Third trimester: Weeks 34 – 35

Week 34 (September 21)
As of the beginning of the week, my weight gain was 35.8 lbs. And I finished packing my hospital bag.

Most nights I crawled into bed around 8:30 pm, slept 2-3 hours, woketo pee, then tossed and turned the rest of the night. I can’t get comfortable.

I saw my midwife Kilmeny on Friday. Baby Boy is still head down but floating. Blood pressure was 90/60 and fundal height at 35 cm. We made sure we were on the same page about doing baby’s bloodwork, and discussed symptoms of SMA. Next week I will do the GBS swab.

On Saturday we had our maternity photos done by Nicholson’s Creative. I’m excited to see how they turned out. We had fun doing them!

And finally on Sunday we drove to Ottawa to attend a memorial at Rogers House. Khloë had her name engraved on a mirrored star and hung in the play room with the other stars. The ceremony was fairly short. I’m glad we went because, even though Khloë passed away there, it was also a safe place for her and for us.


Weeks 34-35

Week 35 (September 28)
On Tuesday evening I had some intense Braxton Hicks and overnight Baby Boy was fairly quiet. Usually he kicks and jabs me while I’m trying to sleep. The BH stopped when I was laying down but as soon as I would stand up, to head to the bathroom, I would get one.

I met the new midwife, Ashley, on Friday. She is nice and seems knowledgable, and I felt comfortable talking to her. She may attend my birth if they need her but most likely it will be just Kilmeny or Suki. My blood pressure was 118/70 and baby’s heart rate was in the 140s. Fundal height measured at 35 cm, so right on track. Baby was still head down but hadn’t dropped yet. We discussed my SPD pain, restless legs, and I did the GBS swab.

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 goes to the Aviation & Space Museum

On August 11th, after a visit to CHEO, we went to the Aviation & Space Museum. Jordan signed out a free family pass from our local library before heading to Ottawa and we ended up spending just under two hours wandering around the museum. It was a nice way to spend time as a family!


Aviation & Space Museum (iPhone)

Aviation & Space Museum (iPhone)

Daddy in space (iPhone)

Zoom zoom zoom! (iPhone)

Our family is crazy

That last photo is pretty epic. 😉