Oliver: 6 months old

Here is what’s been happening in the past few months!

2 MONTHS OLD
December 23 – January 22
– Daddy was very sick so we stayed home for Oliver’s first Christmas instead of going to family celebrations in Kingston
– We went to our church’s Candlelight Service on Christmas Eve
– On Christmas Day we Skyped with everyone at Oma’s
– On December 31st Oliver received his second RSV shot; that evening Uncle Luke & Aunt Katelyn arrived for a 4-day visit
– Oliver weighed 11 lb 14 oz on January 6th, length 23 inches, and head circumference 40 cm; this showed no weight gain since end of December
– Drove to Kingston on January 7th for the weekend; hung out with Oma, went shopping with Aunt Keesje, and Oliver met my Uncle Dale and Aunt Margaret
– Oliver weighed 12 lb 3 oz on January 13th
– January 16th marked one year that my baby girl Khloë has been in Heaven
– On January 21st Oliver received his fourth injection of Nusinersen (IONIS-SMNrx) in Boston with Dr Swoboda; he had the CHOP-INTEND physio test in the morning and injection was scheduled for late afternoon in the OR with sedation; he weighed 12 lb 5 oz, length 23.5 inches, head circumference 40 cm, chest circumference 40.5 cm
– Packed away Oliver’s 3 month onesies and pulled out size 6 month; he was still in size 2 diapers


2 months old

2 months old

3 MONTHS OLD
January 23 – February 22
– Kicking his legs, waving his arms and holding his head up are major milestones
– Oliver was becoming interested in toys dangling in front of him; he smiled and cooed a lot
– Jordan and I celebrated 10 years together on February 2nd
– Oliver weighed 12 lb 9 oz on January 28th; this showed very little weight gain in 18 days and a half inch gain in length; Dr Swoboda recommended a swallow study to rule out swallowing issues
– He started showing signs of silent reflux (twisting and arching while breastfeeding, crying, needing to be upright often); he was prescribed ranitidine
– On February 4th Mary from Infant Development met Oliver; later he received his third RSV shot
– Nanny & Papa visited from February 5 – 10th; Oliver enjoyed having “conversations” with them
– Oliver lifted his head up, for the first time, while propped on a nursing pillow
– Struggled with getting him to take a bottle; he gagged on everything I tried
– By the middle of the month I moved Oliver into size 6 month pants and size 9 month onesies; also switched to size 3 diapers
– On February 15th I woke up in extreme pain from mastitis; spent Family Day at the emergency room to get antibiotics
– On February 16th Oliver had a swallow study at CHEO; he was put in a high chair and fed liquid barium in a squeeze bottle; the x-ray showed no signs of aspirating while swallowing
– Oliver had neuromuscular clinic on February 17th; Dr M showed concern for Oliver’s lack of weight gain and suggested we have a consult with general surgery about getting a g-tube
– We met with Dr Bass (surgeon) on February 18th and talked about g-tube surgery for June


3 months

3 months

4 MONTHS OLD
February 23 – March 22
– Oliver weighed 13 lb 1.5 oz on February 23rd, length 25 inches, head circumference 41 cm
– Started feeding him Neocate Infant formula by syringe as a supplement
– On February 24th he had his fourth month vaccinations
– Tried carrying Oliver around in the Boba 4G to get him used to it
– My mom, sister, and nephew came on February 25th to spend the weekend; we did a lot of cooking and baking
– Oma discovered Oliver was teething by pointing out blisters on his gums
– On February 29th we celebrated Rare Disease Day by wearing out special shirts from Gwendolyn Strong Foundation
– On March 2nd he received another RSV shot
– Switched to CeraVe brand for Oliver’s cleanser and cream; his eczema is so severe that everything causes him to break out and the eczema oozes; after a trip to the doctor about oozing and infected-looking skin, he was prescribed 1% hydrocortisone; Dr K sent off a referral to dermatology at CHEO
– Oliver finally learned how to use a pacifier
– Ordered a seahorse pattern Lillebaby carrier and Oliver was more comfortable in it


4 months old

4 months old

5 MONTHS OLD
March 23 – April 22
– Oliver weighed 13 lb 3 oz on March 23rd; his weight has stopped increasing
– He met all four month fine/gross motor skills
– Uncle Cheepow & Aunt Serena and the girls visited for Easter weekend
– On March 30th Oliver received his last RSV shot of the season
– We bought a used Outlander because we needed a larger vehicle; Jordan plans to sell my car
– Mary worked with Oliver on April 7th; she loaned him a Tumbleform chair
– I bought a used Baby Einstein activity jumper for Oliver
– On April 9th Oliver tried brown rice cereal and pureed sweet potato for the first time
– Oliver started rolling from his right side onto his belly but can’t get his arms out from under him yet
– On April 13th we had neuromuscular clinic at CHEO; Oliver’s occupational therapist supervised him eating pureed food; we also met with his other specialists; he showed off his new skills; had a long conversation with Dawn about Oliver’s lack of weight gain and agreed we needed to move his surgery up
– Oliver weighed 13 lb 4 oz on April 13th, length 25.4 inches
– Oliver was admitted to CHEO on April 14th for failure to thrive; an NG (nasogastric) feeding tube was inserted and he was placed on the waiting list for emergency gastrostomy surgery; the tube made him sound phlegmy and put him at a higher risk for aspirating; I continued to breastfeed before every tube feed
– Oliver weighed 13 lb 6 oz on April 16th
– On April 19th we met the pediatric dietician, Julie, who understood Oliver’s needs in regard to SMA; we moved his tube feeds to every 4 hours
– On the morning of April 20th Oliver had gastrostomy surgery performed by Dr Bass; a PEG tube was inserted; PPN (peripheral parenteral nutrition) was ordered to keep him from fasting after surgery
– Oliver’s tube feeding was scheduled at 75 ml breastmilk every 4 hours at 75 ml/hr and breastfeeding on demand


5 months old

5 months old

6 MONTHS OLD
April 23 – May 22
– On April 25th Oliver was discharged from the hospital and we moved over to Rogers House for the night; CCAC ordered us some enteral feeding supplies and then we headed home the next day
– Applied for Oliver’s first passport
– Oma stayed with us April 29 to May 2nd; she helped cook while we got used to a new routine with Oliver
– Oliver weighed 13 lb 13 oz on May 4th at the doctor’s office, length 26 inches, head circumference 42 cm; refilled ranitidine prescription and he had his 6 month vaccination
– Jordan’s parents arrived May 7 and stayed til May 10th
– Approved for ACSD (Assistance for Children with Severe Disability), but for the bare minimum
– Travel itinerary for Boston was booked; our first time flying for the NURTURE trial
– Oliver enjoyed being able to sit supported on the floor with toys in front of him
– His first tooth finally came through
– We registered for SMA Family Camp Ontario (July)
– I purchased a new stroller, Bugaboo Donkey Mono, for Oliver; insurance agreed to pay for 80%
– On May 16th we flew to Boston; Oliver did great on the plane, although the whole ordeal was stressful for myself; car service delivered us to our hotel
– In the morning of May 17th Oliver had the motor function test (CHOP-INTEND) and in the afternoon the CMAP; Dr Swoboda was very pleased with his progress
– On May 18th Oliver had his fifth injection of Nusinersen with sedation; he weighed 14 lb 2 oz, length 25.9 inches; he passed the neurological exams and that evening we left the hospital to go out for dinner; the next morning we returned to the hospital for one last neuro exam
– On May 19th we flew home
– I can’t keep Oliver from constantly rolling from his back to tummy, he’s seriously working on this skill


6 months old

6 months old

6 months old

I cannot believe my little boy is 6 months old! We are so happy with the progress he has made; he truly is a miracle!

Third trimester: Weeks 28 – 31

Week 28 (August 10)
On Thursday I met with Suki. Baby Boy is still doing fine. Fundal height measured at 29 cm and blood pressure was 100/75. While she was feeling my belly she discovered his head is up by my ribs. But there’s still plenty of time for him to turn.

That same afternoon I finally got my hair cut! It was way too long and very damaged; I hadn’t cut it since last July. Now it’s layered just above my shoulders and feels healthier.

I’ve been having pain in my ribs, which feel like spasms. One night they hurt so much it woke me up and it was hard to breathe.

On Sunday our church held the service out of doors. The weather was very hot but there was some shade under two tents. Afterward there was a BBQ with great food and friends.


Weeks 28-29

Week 29 (August 17)
On Wednesday we started our drive to New Brunswick. We stayed in a motel the first night after a 9 hour day. The worst part of the drive was trying to find a comfortable position to sit in and the multiple stops we had to make so that pregnant lady could pee. The next day we stopped at the Target in Bangor, Maine and bought a few items for the baby. We made it to Jordan’s parents’ home by 7:30 pm EST. His mom fed us pineapple chili for dinner. My sister-in-law and family arrived shortly after we did. The weather was sweltering hot and humid.

Jordan’s brother got married on the Saturday. There was no air-conditioning in the chapel. I’m pretty sure it was over 35°C outside and with everyone crammed into the building it felt even warmer inside. I kept drinking water but I felt like I was going to pass out a couple times. Waiting around for the group photos to be taken was brutal. And then no air-conditioning in the reception hall, just some fans going. I had never felt so hot and uncomfortable in my life! Unfortunately I was so miserable that I couldn’t wait to leave and blast the a/c in the car. I think I would have enjoyed that trip more if I wasn’t pregnant.

Week 30 (August 24)
During my midwife appointment this week I saw Kilmeny. Baby Boy’s heartbeat was strong and steady. Fundal height measured at 31 cm and blood pressure was at 100/66. By feel she thought his head was down and feet in my ribs. Two days before the appointment baby was doing some massive movements so that must have been him turning.

We received a letter from Rogers House (palliative care building associated with CHEO) about adding Khloë’s name to a mirrored star for their memorial wall. We agreed to let them engrave her name on a star. There will be a small ceremony on September 27th that I’d like us to attend.


Weeks 30-31

Week 31 (August 31)
Not much went on this week. Baby’s movements were still strong and keeping me up at night. Cleaned up the house in anticipation of Nancy and family’s visit for the weekend, which took a toll on my poor pelvis. I loathe SPD. I’ve gained 32 lbs so far.

We had a good visit with my friend, her husband, and their little guy. Loukas enjoyed playing with some of Khloë’s toys and he was obsessed with the magnets on the fridge. I wouldn’t let him touch the magnets of Khloë but I let him play with the princess ones that my sister made; he loved that! Nancy gave us a gift bag with some baby clothes, too.

Also I booked a newborn photo session with Cole Creations. She did our maternity photos two years ago and was offering a very reduced-price newborn session so I put down the $50 deposit. She will be travelling from Kingston within 7-10 days of Baby’s birth! I’m really excited to do these pictures because it’s one of the things I regret not doing with Khloë.

Second trimester: Weeks 26 – 27

Week 26 (July 27)
It was a HOT week! I don’t remember the heat bothering me that much when I was pregnant two summers ago; maybe I’ve just forgotten! A few nights of the week I wasn’t able to sleep much, even with two fans pointed at me and no blankets on. It was so sweltering hot on Wednesday that Jordan and I decided to hop in the car, blast the A/C, and drive to Pembroke for chocolate milkshakes and ice cream from the dairy. Meals have been a bit tricky because I didn’t want to turn on the oven. We’ve been living on cold salads and barbecued hamburgers or sausages, but one day I did make a creamy ranch chicken in the slow cooker. Oh, I finally pre-registered at the hospital I’ll be giving birth at.


Weeks 26-27

Week 27 (August 3)
Some websites consider this third trimester, but to make it easier I’m going to use 28 weeks as third trimester. My hips and pelvis are aching more, a sign that baby and belly are growing and that I’ve pushed myself too much for one day. In preparation for my mom’s upcoming visit, I did a lot of house cleaning, which exhausted me. I had one really bad night with SPD (symphysis pubis dysfunction); anytime I moved I would get shooting pains in my pelvis. Jordan had to help me to the bathroom in the middle of the night because I literally couldn’t stand up without collapsing.

My mom drove up on Saturday and we spent the weekend cooking yummy meals. She made my favourite mushroom risotto one night. She had a blast taking care of the chickens, constantly checking on them, feeding them, and collecting eggs. I think she enjoyed herself!

Khloë: 8 weeks old

My oh my, 8 weeks old!


8 weeks old

8 weeks old (January 28)


This post is a little late in the week but I don’t always have time to get on the computer. Not much new in development. Khloë is getting better at holding her head up but still dislikes tummy time. She loves to stare at faces. There are always plenty of grins when we put her on the change table; she knows she’s getting a clean diaper to poop in! She continues to sleep in a bassinet in our bedroom.

Diapers are still size 1 and clothing size 0-3, although some 3-6 month pants fit her. She has SO much clothing!


She's getting big!

She’s getting big!

Aunt Crystal meeting her niece

Aunt Crystal meeting her niece


This weekend my mom, two sisters, and nephew came up for a visit. Crystal met her niece for the first time and fell in love. 🙂 She brought a suitcase full of clothes and other items for her, too. My mom and other sister brought gifts as well. My girl is so spoiled! Also, our church threw a baby shower for Khloë and I on Saturday. Yes, SPOILED!

Third trimester: Weeks 28 – 29

Week 28 (September 23)
Hello third trimester! Although I think it technically began in week 27 but let’s just ignore that.

On the Friday of this week I met with Suki, one of the midwives. My blood pressure was normal and Baby K was growing appropriately. Her head was down in my pelvis and feet/legs up near my ribs. No wonder I keep seeing what I think is a leg pushing out the top of my belly! I’m also having Braxton Hicks contractions quite regularly. They aren’t painful but there’s definitely a lot of pressure and tightness in my belly when they occur. Baby’s heartbeat is 146 bpm. I’ve gained 24 lbs total.

Suki gave me 2 DVDs to watch since hubby and I aren’t doing prenatal classes. One is on comfort measures during childbirth and the other is a twelve-part series on common postnatal issues. We’ve started watching the one on comfort measures and have learned some techniques to use during labour.

One of the questions I asked my midwife was what happens once we get to the hospital. She explained that I first pick up my registration papers (I’ve already preregistered) and then head to Labour & Delivery. I should be put into a private birthing room with access to en suite bathroom. She mentioned that if my water breaks in the middle of the night but I’m not having contractions, I should only call her if the fluid is tinged greenish; otherwise that phone call can wait til morning. If I’m having contractions at night I can take Tylenol and Gravol to help me rest until morning (unless they are very close together and I can’t wait any longer to get to the hospital).

My next appointment will be October 10th and I’ll be going every 2 weeks now.

In other news, this was a very busy week! Jordan’s parents arrived from New Brunswick on Wednesday and left Sunday afternoon. They helped finish the new flooring in our master bedroom, moved all our furniture into the room, set up the nursery and hung pictures on the walls. Charlene and I washed, folded, and sorted really cute baby clothes; washed toys and the Exersaucer that was given to us; and cleaned and de-furred the Infantino carrier my sister lent me. We got so much stuff done; I am so thankful! Nursery pictures will come later when it’s completely finished!

After that exhausting week, I started to not feel well Sunday night at our church’s potluck dinner. We left early and I slept off and on from 7 pm to 8 am the next day.


Weeks 28-29

Weeks 28-29


Week 29 (September 30)
I’m experiencing a lot of intense Braxton Hicks contractions, just like the previous week. They tend to stop me in my tracks, they’re so uncomfortable.

Had more pains in the top of my belly yesterday while we were out shopping. I’m not sure what it’s from or if it’s just stomach pains unrelated to pregnancy, but they hurt enough that after picking up a white floating shelf and Scotch Guard from Home Depot we went right home instead of continuing on to Walmart. I found that if I curled onto my left side or held my hands underneath my belly while I was standing, then the pain would dissipate.