Khloë: 9 months old (40 weeks)

Wow, she’s getting so big!


40 weeks (September 9)

40 weeks (September 9)


So that shirt she’s wearing? It’s size 2T! Must be made small though; her other T-shirts are 12 or 18 month.

Lots of appointments and meetings this week. Here’s what went on:

Tuesday: We met Leona, a dietician with CCAC, for the first time. We talked about Khloë’s current diet and I explained that we would be switching to an elemental formula when she’s a year old. Jordan and I have discovered that any dieticians we deal with are trying to get us to feed our daughter as if she was a child with normal muscle mass. She needs less fats and proteins than a “normal” kid. There aren’t any documented studies on SMA and nutrition. I have spoken with other parents who have been feeding their SMA kids special amino acid formulas, baby foods, and breastmilk and we plan to do the same; but to get the dieticians on the same page is a hard task! These parents are not considered “professionals” to them. She had a portable scale with her and weighed Khloë at 16 lb 13 oz and she measured 28″ long.


9 month collage

9 month collage


Wednesday: Mary demonstrated some infant massage techniques to use on Khloë’s legs. She loved it! Mary lent us a Tumble Form chair to use for Baby Girl, as well. We also discussed the latest car bed issue–that CHEO doesn’t want to deal directly with FSMA Canada, but Khloë’s neurologist is willing to write a prescription for the Hope car bed and EZ-on Vest.

Thursday: A military chaplain came to our house and spoke with us about Khloë’s condition and how it will relate to Jordan’s work. He assured us he’s there to advocate for us and will do his best to make sure we don’t fall through the cracks, so to speak.

Sunday: After church, we had a delicious lunch at Ken & Sandra’s. They let us bring Khloë’s stroller inside and park it in the kitchen. It’s too awkward to hold her on our laps while eating since she needs extra support, and the stroller in the carriage position is perfect for her to lay flat and play in.


Sweet grin

Swing swing swing!

Monday: Taunia (Occupational Therapist) and Christine (Physiotherapist) from CCAC stopped by. Taunia gave us a larger Tumble Form chair. I attempted to feed Khloë while sitting in that chair but she started choking. The recline position is just not right. Taunia also gave us a few ideas for messy and sensory play. Christine just observed Khloë and made sure we were still comfortable doing chest therapy. Later in the afternoon, Kathy (Case Coordinator from Infant & Child Development) met with us for the first time. Her role is to help us with applications, find relief workers, and to offer any other kind of help we need. We had a great conversation with her. She walked us through the application for Special Services At Home, yet another program of funding we would like to be approved for.

Khloë: 8 months old (37 weeks)

Here we go:


37 weeks (August 19)

37 weeks (August 19)


At the beginning of the week CCAC sent an Occupational Therapist and Physiotherapist to our home to meet with Khloë. The ladies were very friendly and Khloë gave them lots of smiles. I showed the OT the feeding chair and the infant rocker chair we currently use and explained that, although they work fine right now, Baby Girl is growing quickly and will soon be too tall for these chairs. Since she can’t support her head when upright, Khloë needs to be partially reclined when sitting in either of her chairs. These chairs are meant for babies who develop into strong toddlers who can hold their heads up and don’t need extra support. The OT said she would look into finding us a tumble form chair.


Beauty

On Wednesday we went to Prenatal Nutrition. In the late afternoon, Mary from Infant Development came and worked with Khloë for an hour. We agreed that she would benefit from infant massage and we will start that in September.

The most important part of the week was Khloë’s appointment at CHEO on Friday. We met with an anesthesiologist to discuss Baby Girl’s upcoming G-tube (gastrostomy) surgery. It looks like surgery will take place next Wednesday, August 27th, but we must wait for confirmation. In our original discussion with the surgeon, we were told to expect three days in the hospital for recovery and training on how to use the feeding pump. I voiced my concerns to the anesthesiologist about fasting, as it’s not good for an SMA child to go more than 6 hours without adequate nutrition–Khloë will need to fast starting four hours prior to surgery. Other SMA families advised us to have PPN (peripheral parenteral nutrition) given to Khloë, but even though I asked for it and the doctor said she would make a note about it on Khloë’s chart, I doubt she will get it. We were told that it’s not protocol at CHEO to do PPN.

The following quote, taken from the “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, is on the dangers of fasting:

Spinal Muscular Atrophy patients are particularly vulnerable to catabolic and fasting states [and] are more likely to develop hypoglycemia in the setting of fasting… Thus, it is necessary to avoid prolonged fasting, particularly in the setting of acute illness, in all Spinal Muscular Atrophy patients. Nutritional intake should be optimized to meet full caloric needs within 4 to 6 hours after an admission for acute illness, via enteral feeding, parenteral feeding, or a combined approach as necessary. Prompt postoperative caloric supplementation is recommended to avoid muscle catabolism, particularly in a child with reduced fat store.

As long as the surgery goes well, she’ll be given Pedialyte; if she tolerates that and has been extubated with no breathing issues, I’ll be able to breastfeed. If Khloë is too tired to nurse, I can give her pumped milk with a syringe. I have no idea how long she will end up going without eating if she isn’t given PPN and can’t breastfeed right away.


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Catch that tongue

On a happier note, my sweetpea has added the sounds “guh guh” and “ba ba ba” to her repertoire of baby babble. She’s being saying “mum mum mum” for awhile now but usually while upset. She even mouths it without the sound coming out, which is really cute. She also tries to copy me when I make a certain noise with my tongue. It’s hard to describe but she’s fascinated by watching me do it!

Third trimester: Weeks 36 – 37

Week 36 (November 18)
The pain I was experiencing from SPD was much better this week. If my body felt like I did too much, I would acknowledge the ache and sit down to rest. My last physio appointment was Thursday and Donna said if the pain becomes worse then I’m to come back to see her after the baby is born.

On Friday I met with Kilmeny and she told me I tested positive for Group B Strep. We talked about what that means if my water was to break and when I should page her or Suki. When I’m in active labour, I’ll need antibiotics administered through IV every 8 hours. (I can’t take penicillin or amoxicillin, which is given every 4 hours.) Next appointment will be November 29th.

Fundal height was 36 cm and my blood pressure still good.

On Saturday, Jordan and I toured the Labour & Delivery floor at Pembroke Regional Hospital. And the car seat’s installed!


Weeks 36-37

Weeks 36-37


Week 37 (November 25)
Full-term! I don’t think I’ll have the baby early, but one never knows. I haven’t had that nesting feeling but both midwives said Baby Girl could be early.

This week the SPD pain came back. I probably should have gone back to physio, but I thought I’d wait it out. Met with Kilmeny again on November 29th. We talked about what happens after delivery; she explained about the vitamin K injection and eye ointment for baby. My blood pressure was fine and fundal height still at 36 cm. I peed on a stick and it showed a high amount of proteins and sugar in my urine. Midwife wasn’t concerned as this is the first time either have shown up. She said not to worry and we will check again next week.

My total weight gain is 36 lbs.

Third trimester: Weeks 34 – 35

Week 34 (November 4)
Luckily the obstetric physiotherapist had a cancellation so I didn’t have to wait two weeks for my initial consultation appointment. I explained where I was experiencing the pain and how it made it difficult for me to stand or walk (or even press the brake pedal while driving). Donna confirmed it to be SPD (symphysis pubis dysfunction). She said that rather than moving as one, my pelvic bones are actually shearing together because the cartilage is too loose. Ouch! She showed me ways that I can sit, get in/out of bed, roll over, get into a vehicle, etc that shouldn’t cause anymore pain or make it worse. She gave me a list of simple strengthening exercises to do and suggested using ice on the area as much as possible. I tried on two different support belts and chose the one that felt most comfortable. Then she worked on my pelvic area for a bit. I have a couple more appointments over the next two weeks.


Weeks 34-35

Weeks 34-35


Week 35 (November 11)
My lovely stretch marks are very visible in the Week 35 photo. Anyway, hubby and I attended the local Remembrance Day ceremony this week. I wore my support belt (I’m supposed to wear it as much as possible, even to sleep if I can stand it) and it made the standing around at least bearable. By the time we got home I had an ache in the front of my pelvis so I knew that meant to use some ice and take it easy. But at least I was able to get out of the house. The only annoying thing about the belt is having to take it off every time I need to pee… which is often!

Lots of appointments this particular week! I’m still having trouble rolling over in bed without hurting myself, which I mentioned to Donna at this week’s physio. Also when I lay on my back I get really sharp sciatic pain shooting down my left leg. She worked that area which I think has helped somewhat. I also met my new family doctor, Dr Kipp, on Tuesday. And finally on the Friday I saw Suki. She had me do the Group B strep swab because she doesn’t think I will hit 40 weeks and the results take at least one week to come back.

Fundal height measured at 35 cm. Heartbeat at 150 bpm. Good blood pressure for myself. And I have gained a total of 33 lbs so far.

Third trimester: Weeks 30 – 33

Week 30 (October 7)
Baby shower time! Technically I was 29 weeks for my baby shower on Sunday but for simplicity I will say 30 weeks (since my weeks begin on Mondays). I had a lot of fun and received some pretty amazing gifts from some amazing friends and family! Baby K will definitely not lack in the clothing department, that’s for sure! I will do a separate post about the shower.

This week at Prenatal Nutrition, a public health nurse spoke to us about breastfeeding. We made snack foods and played a questionnaire game. I guess I read too much because I got all the answers correct! I plan to breastfeed Baby K so it’s great to be given these extra resources. The nurse will come every two weeks and speak about a different topic. She’s doing this as a special favour because there aren’t any prenatal classes offered in our little village, and to be honest I don’t want to drive 30-40 minutes to go to one.


Weeks 30-31

Weeks 30-31


Week 31 (October 14)
Happy Thanksgiving! Enjoyed a delicious turkey dinner at a friends’. Unfortunately, Baby Girl takes up so much room that I can only eat small amounts at a time. My eyes definitely wanted more food but I just couldn’t manage more than a little scoop of each dish. I was falling asleep by 8 o’ clock.

Still having a lot of Braxton Hicks and craving celery/carrot sticks.

My appointment last Thursday was cancelled due to a birth and rescheduled for this Thursday with Kilmeny. This weeks’ check-up was pretty quick. She explained discharge procedures at the hospital and what items are provided for baby. Blood pressure good, fetal heart rate at 148 bpm, and fundal height at 30 cm. Baby Girl still has her head down and feet in my ribs!

I’ve gained 28.5 lbs total.

Week 32 (October 21)
She is constantly pushing her little leg up so high that I get a big uncomfortable lump on the top of my belly. She’s an active girl, constantly moving around and getting hiccups.

I’m still eating tons of carrots and celery. And chocolate.

At Prenatal Nutrition this week, the public health nurse showed up to speak about comfort measures during childbirth. Most of the measures I’ve already either read about or watched a video. She did, however, give us each a folder full of great pamphlets and booklets that I’m excited to go through!

I’ll be heading to Kingston at the end of the week to visit hubby, as he’s now on course there. Maternity photoshoot on Saturday!!!


Weeks 32-33

Weeks 32-33


Week 33 (October 28)
After 5 days of suffering, I broke down and called my midwife about the severe pelvic pain I’d been experiencing. It started almost the moment I reached Kingston and unloaded my stuff at mom’s and continued all weekend. Even once I returned home it still bothered me. In the morning, my pelvic area is sore but tolerable. By mid-afternoon, the pain gets considerably worse until I can hardly stand or walk. Stairs are almost impossible. At night, turning from my left side to my right side is agony. It feels like my pelvis is splitting apart. Anyway, Suki said it’s most likely symphysis pubis dysfunction (eek?!) and is quite common. She suggested I see an obstetric physiotherapist. I will be seeing Suki in 2 days and will find out for sure if that’s what I should do.

In other news, Jordan and I had maternity photos done with Cole Creations. I’m really excited to see how they turned out!