Oliver: 1 month old

November 23 – December 22
My baby boy turned one month old on November 23rd. It really is incredible how fast he’s growing! Oliver’s first neuromuscular clinic visit was scheduled for December 9th. He also had IONIS-SMNrx (previously labelled ISIS-SMNrx) injections scheduled for December 3rd and December 17th. What a busy month for my baby!


1 month old

Nov 23 – We received the Hope car bed and a box full of goodies from CureSMA! Oliver’s grandparent arrived from New Brunswick and Charlene and I set up the Christmas tree.

Nov 25 – Oliver had a hearing test done. He passed with flying colours.

Nov 26 – Home visit from Suki. Oliver weighed 10 lb 4 oz.

Nov 27 – Oliver had a hard time napping during the day. He was so over-tired that he fussed til 2:15 am. I think it was from all the noise in the house with his grandparents visiting. They stayed with us from November 23 – 30th and loved interacting with their grandbaby.

Nov 28 – We went to the Christkindlmarkt at the “Germania Club” in Pembroke. I bought various kinds of cookies and a bottle of dark maple syrup. Afterward, Jordan’s parents treated us to Thai food for lunch!


Snuggles

Dec 2 – We arrived in Boston, Massachusetts after a twelve hour day of driving and frequent stops. The day before we had driven to Kingston and stayed overnight at my mom’s to save us some driving time. There was a mix-up with our room at the hotel; it was 10 pm by the time we got a room. Poor Oliver was miserable and just wanted to be asleep in his bed.

Dec 3 – A double whammy of a day: Khloë’s second birthday and Oliver’s injection #2 day! His big sister was watching over him that day. At the hospital, Oliver was weighed at 10 lb 9 oz and 22.6 inches long. His head and chest circumference were both 38 cm. At 12:30 pm we moved to the PICU where Oliver was given a dose of IONIS-SMNrx by intrathecal injection (into his spine). I stayed with him this time. He cried during the injection but tried to calm himself by sucking on his bottle. The rest of the afternoon he slept and ate normally. Around 7 pm, after Dr Swoboda finished her neuro exam and left for the night, Oliver began to fuss and needed to be either held, rocked, or nursed. At 9 pm, when Jordan went back to the hotel to sleep, Oliver became inconsolable. I asked for the nurse to give him Tylenol but the medication wasn’t written in the orders for the night and the nurse couldn’t reach the doctor. Finally at 3 am Dr Swoboda called and gave the go-ahead for Tylenol. She returned to the hospital at 4:30 am and held Oliver for two hours while I slept. She got him to take a 2 oz bottle of Similac and he calmed down after that.

Dec 4 – Dr Swoboda did Oliver’s last neuro exam in the morning and we headed out! We stopped overnight in Lyons Falls, New York; by Saturday night we were home.


Boston

Beautiful boy

Dec 9 – Neuromuscular clinic at CHEO. The morning prior, we drove up and registered Oliver at the palliative care building (Rogers House) and stayed overnight. We met Oliver’s team. I asked for a pulse oximeter and CoughAssist for Oliver’s use. Carlie (RT) loaned us her CoughAssist machine and said that she would have the pulse ox and new CA machine couriered to our home. We filled out some paperwork with our social worker: applied to ACSD, Muscular Dystrophy, Easter Seals, Disability Tax Credit Supplement, to name a few.

Dec 10 – Oliver received his first Synagis shot (RSV antibodies).

Dec 11 – Brought Oliver to see Dr K for his skin issues. His face was covered in crusts, through his eyebrows and getting close to his eyes. My boy was covered in seborrheic dermatitis! Dr K told me to use 1% hydrocortisone, and after two days of applying that, along with Glaxol cream, the crusts flaked off.

Dec 12 – Suki did her last home visit and weighed Oliver at 11 lb 3 oz. His length was 23 inches. Around this time I moved Oliver into size 2 Pampers and 3 month or 3-6 month clothing.

My mom visited with us until December 14th. My little Love Bug was full of smiles and laughter; a sound of pure joy. He was moving his legs more, turning his head from side to side, pulling his head back when held upright, and lifting his arms again. I loved witnessing these small miracles! His newfound strength is proof that IONIS-SMNrx is working!

Dec 16 – Arrived in Boston late at night. During the drive Oliver vomited while in his car bed and started choking on it. I had to unbuckle and pull him out quickly and turn him on his side. After a little crying, he was fine. Jordan pulled into a Dunkin’ Donuts and we cleaned him up in there.


Happy Oliver

Oliver's Christmas tree

Dec 17 – At the hospital, Dr Swoboda was impressed with Oliver’s improvements in strength since the last time she’d seen him–two weeks ago. He had blood drawn and a urine sample taken. He weighed 11 lb 3 oz. Injection #3 of IONIS-SMNrx was attempted in the PICU with no sedation; however Oliver was more wiggly than usual and the doctor wasn’t able to successfully give the injection. He got very upset this time and his o2 kept dropping. Luckily she was able to book an OR with an anesthesiologist for early evening. We met the anesthesiologist at 5:30 pm, signed the consent form, and handed Oliver over to the team at 6 pm. Dr Swoboda was able to do the injection successfully and I breastfed him in Recovery an hour later. We made sure Oliver was given Tylenol to prevent any pain or discomfort and he ended up having a very good night! Sedation seems to be the trick in giving him a much better recovery after the traumatic IV attempts and lumbar puncture. During our hospital stay Jordan was sick with a bad cold so he remained at the hotel for most of the time. When he did come over to see us, he made sure to wear a mask.

We had planned to head to my mom’s on Christmas Eve but with Jordan still being ill we had to stay home. That turned out to be for the best because then we were able to spent time at home after our return from Boston.

Oliver: Birth to 1 month

October 23 – November 22, 2015
The first month with my baby boy was a whirlwind, to say the least: his early birth, getting used to having a newborn at home, his diagnosis of SMA, and travelling to Boston to get him in the NURTURE clinical trial.

This post is for me to play catch-up!

Oct 24 – The day after Oliver was born, we left the hospital at 9:30 am. The L&D floor was very busy and short on rooms so they wanted us out of there as soon as possible.

Oct 25 – Home visit from Suki. Oliver was slightly jaundiced.

Oct 26 – Home visit from Suki. Oliver weighed 7 lb 8 oz. We gave him BioGaia probiotic drops, as recommended, to help with gas (he’d been struggling at night).

Oct 27 – Noticed that since starting the BioGaia, Oliver’s poops have been even more frequent and burning his bum!


October 27

November 1

Oct 28 – We went to Prenatal Nutrition and brought my mom. Decided to stop the probiotic drops and picked up Sudocrem to help heal his bum.

Oct 29 – Oliver was breastfeeding every 2 to 2.5 hours round the clock. Lots of wet diapers! Suki had the flu so home visit was rescheduled.

Oct 30 – Oliver turned 7 days old. We drove to CHEO and met with Claire (genetic counsellor) and geneticist. Oliver’s muscle tone seemed normal for a newborn. He had blood drawn for SMA testing and weighed 7 lb 12 oz.

Oct 31 – We didn’t do anything special for Halloween but did take some pictures of Oliver in a themed sleeper.


October 28

My mom stayed with us until November 2. I loved having her with us. She made delicious meals for us and changed lots of dirty diapers! She also finished crocheting a beautiful baby blanket and two hats for Oliver.

By the end of his first week, I switched to size 1 diapers rather than buying another box of NB. Some NB size onesies were starting to be too short, as well. Oliver slept the days away, only having a few alert moments. When awake, he would follow my voice with his eyes. At night, he woke every 2-3 hours to breastfeed and then he’d fall back to sleep. I was finally getting some shut-eye!


November 9

Nov 3 – Jordan from “Cole Creations” came all the way from Kingston to do two newborn photoshoots at my house–one for Oliver and one for my friend’s baby girl, Josebelle, who was born five days after my boy. Oliver was 11 days old.

Nov 4 – I had Oliver weighed at Prenatal Nutrition: 8 lb 5 oz.

Nov 10 – Oliver met his family physician, Dr K. He weighed 8 lb 14 oz and measured 21 inches long (same as at birth). Around this time I switched him into 0-3 month clothing and packed away all the NB outfits.

Nov 11 – Geneticist called in the evening to tell us that Oliver’s blood test results showed he had Spinal Muscular Atrophy (SMA).

Nov 12 – I emailed the coordinator for the NURTURE trial (in Boston, Massachusetts) and explained Oliver’s diagnosis and our interest in getting him into the presymptomatic newborn clinical trial for ISIS-SMNrx. Kellie replied right away and Jordan and I immediately FaceTimed with her and Dr Swoboda. We agreed to Dr Swoboda’s suggestion that we get Oliver to her as soon as Monday so that she could assess him and, if he’s accepted, be given his first injection by the Thursday.

Nov 13 – We met with Dr M (neurologist) at CHEO. He examined Oliver and told us that he was displaying some signs already. He was 3 weeks old. I had noticed lessened movement in his arms and legs (only because I was really looking for it) and his inability to pull his head up. Dr M wrote us a prescription for a car bed.


November 2

November 6

Nov 15 – Arrived in Boston at 7:30 pm and settled in at the hotel. It took us two days to drive there.

Nov 16 – We met Kellie and Dr Swoboda and discussed what to expect from the clinical trial. Oliver went through a full day of screening, including an ECG, blood draw, motor function test, and CMAP. We had to wait for the blood work to come back before Oliver could officially be accepted into the study. The following day they had to repeat the blood draw due to the vials clotting.

Nov 18 – Oliver was accepted into the NURTURE trial!

Nov 19 – Procedure day! Oliver was given the drug ISIS-SMNrx intrathecally (administered through lumbar puncture). His back was numbed but of course he still got very upset. No sedation was needed. Jordan stayed with him the whole time while I pumped, since he had to miss a feeding session.


Two weeks old

Three weeks old

Although procedure days will be tough on our little guy, we know it’s the right thing to do. SMA is a terminal disease that takes almost everything away from a child. But this drug can delay or stop progression. Right now we hope for the little things, like being able to hold his head up and kick his legs. We have to make two more trips to Boston in the month of December for two more injections, then we will have a month reprieve.

First trimester: Weeks 4 – 5

With my first pregnancy, I was pretty good at keeping track of everything. This time around, I have been forgetting to write things down when they happen. I do have a bunch of journal entries, they’re just not as detailed as I would have liked. As far as I can remember, this pregnancy is fairly similar to my first.

Deciding to have another baby, after losing Khloë, was not easy. When she was alive, Jordan and I always hoped that we could give her a sibling. I wanted to start trying as soon as possible, but I had to wait until my cycles came back–which they finally did when Khloë turned one year old. We know that there is a 25% chance that this baby will have SMA just like Khloë. That means there is a 75% chance that Baby will be perfectly healthy! 25% may seem like a small number, but to us, it’s the number we are most afraid of.

I am trying my hardest to stay positive about this pregnancy. Jordan and I are both very happy about it. We refused invasive genetic testing of the fetus (ie. amniocentesis or CVS) because the results would not change our decision about having the baby. Our plan, after a discussion with our genetic counselor, is baby’s blood will be taken after birth and sent away for testing. When Baby is a few weeks old, we will receive the results. That time frame will feel like an eternity, I don’t doubt.

Anyway, my due date is November 2nd, 2015. So here we go! 🙂

Week 4 (February 23)
The day my period was due, a Monday, I decided to pee on a stick! And lo and behold, it was very positive! I was pretty excited and felt like Khloë had sent us this wonderful gift a mere month after she went to Heaven. The new baby’s due date is November 2nd, which is actually a month before Khloë would have been 2 years old. Of course, after that first burst of excitement came this thought: What if this baby has SMA? I knew that, no matter what, I had to stay positive and deal with those crazy emotions day by day. As soon as Jordan came home from work, I showed him the test and he gave me a silly smile. It’s so hard to get a reaction out of him, but I could tell he was pretty happy!

That same day I contacted the midwife group I used before and left a message. The secretary called me back on Wednesday and said that they would be delighted to have me back! My first appointment was scheduled for March 5th. As for symptoms, this week I was feeling tired, hungry, with mild cramps and jabbings in my uterus. By the end of the week, I noticed my favourite jeans were pretty snug against my belly. Already?!

Week 5 (March 2)
First midwife appointment was on Thursday of this week. I met Megan for the first time (she was on maternity leave during my first pregnancy), and unfortunately I had to explain about Khloë’s diagnosis and passing. She was really sweet and empathetic. We talked about how my first pregnancy and labour went. She sent me home with a requisition for blood work and a dating ultrasound at the small local hospital. That same afternoon the hospital called and scheduled the ultrasound for March 11th. They think I’m actually going to drink a whole litre of water beforehand. Don’t make me laugh!

On Saturday, my mother-in-law called to let us know that the Florida trip was finalized! We are going to surprize them with the news in Florida.

Khloë: 5 months old (24 weeks)

Here she is:


24 weeks (May 20)

24 weeks (May 20)


When a baby is born, we don’t expect anything to be wrong. Not after we see that she is perfect. But since about 2 months old, her family doctor has said Khloë is “floppy”. I wasn’t really worried until she turned 4 months old and still couldn’t lift her head while on her tummy. Even now, her head flops forward after she holds it upright for a moment. She uses her arms and manages to eat her hands, but even a plastic toy ring is too heavy for her. She rubs her feet on any surface, but does’t move her legs.

On May 21 we saw Dr M, a neurologist at CHEO in Ottawa. He noticed right away the low muscle tone (hypotonia) that Khloë displays. He tested her reflexes and found none. He performed an EMG (tiny acupuncture-type needles inserted in her wrist and feet and a machine that causes little shocks); the EMG showed a disconnect between her muscles and motor neurons. At this point, Dr M suspects a genetic disease. He sent Khloë for blood work, and it took three pokes before the nurse finally got blood out of a vein. Poor baby was so upset! Now we wait for the results of the test; if it’s negative, then the next procedure is a muscle biopsy that will hopefully provide us with an answer. Khloë is to continue with exclusive breastfeeding and not receive any solid food until we know that her throat muscles are strong enough not to cause her to choke and aspirate food into her lungs.


baby girl

collage_16

I’m trying not to stress out and worry my self sick. Khloë is happy, smart, and otherwise healthy. She may need physio, she may learn to sit and roll over with a lot of help, and if she is lucky she may even learn to walk. I hope that with the support of our friends and family we will be able to get through this and provide our baby girl with all the love she deserves. She is definitely spoiled. 🙂

On a happier note, we have a picnic planned this week with Stacey and the girls and a visit with Amanda and the boys later in the week!

First trimester: Weeks 4 – 13

The reason this post has taken so long to show up is because I wasn’t sure how to put it together. I have been keeping a journal and taking weekly pictures of my growing bump. My due date is December 16th, 2013. 😀

Week 4
I found out I was 4 weeks pregnant on a Friday. I had waited 6 days past my longest luteal phase, then peed on a stick. I kind of had an inkling that something felt different, and I was ecstatic to see that plus sign show up! After all our fertility issues over the years, this was finally happening. It also felt very unreal. My earlier symptoms were typical of “that time of the month”, except that I tired easily. I had assumed my exhaustion was from shoveling the driveway every single day! (Yes, we still had snow.) After the weekend passed, I called the local midwife centre and left my information, hoping that they would have room for me as I didn’t have a doctor here. Two days later I received the great news that I would have a midwife!

Week 5 (April 15)
These were my symptoms that week: peeing way more than I normally did (and I usually pee a LOT); constantly feeling like I needed to put food in my belly; mild period-like cramps; that wonderful bloated feeling; and the need to nap every afternoon for 30 minutes to an hour. I hadn’t been sick to my stomach yet. The only thing that worried me was sometimes I would get a sharp, stabbing pain that would double me over (in Canadian Tire, no less). However, there’d been no spotting or bleeding. My first midwife appointment would be April 26th.

Week 6 (April 22)
This week I met Kilmeny, one of the midwives I would be seeing throughout my pregnancy. We discussed my health history; I explained about my abnormally long cycles and that because I temped I knew when I had ovulated and that I was due December 16th. She gave me a requisition to have blood work done (eek!) and explained that I would need a dating ultrasound to be sure.

The only new symptom this week was queasiness. My next appointment was set up for May 31st.


Weeks 6-7

Weeks 6-7


Week 7 (April 29)
Where we live, there are two hospitals. The smaller one is located about a 10 minute drive from our house. The larger one, where I’ve chosen to give birth, is more like 40 minutes. For the dating ultrasound, I chose the closer hospital to go to. That appointment was set for May 28th. The receptionist on the phone explained that I would not be allowed to see the baby on the screen or be given any information regarding the ultrasound. (The reasoning behind this is because the small hospital doesn’t have a radiologist on staff and the ultrasound images would be sent away to be examined. I would receive the information 3 days later.)

Still no “morning sickness”, but the queasiness bothered me. I found myself eating a lot of bagels and cottage cheese.

Week 8 (May 6)
Nothing new to note in regard to symptoms. I went in for bloodwork, which I’m normally okay with even though I’m not a fan of needles. What helps me get through it is to just look away and breathe slowly. Unfortunately, near the end of the second phial of blood, the nurse told me that my vein had collapsed and she might have to find another one. As soon as those words were out of her mouth, I began to feel faint and a cold sweat broke out on my face and neck. My body started shaking in reaction. The nurse squished my vein a bit and happily said that she had been able to fill the last phial. She noticed that I was about to faint and immediately had me put my head between my knees. After she bandaged my arm, she had me lay down with an ice pack on my neck. I think I laid there for a good 20 minutes before I started to feel like a normal person again. I have never reacted that way to bloodwork before! I felt ill and light-headed the rest of the day and slept for 2 hours after arriving home.


Weeks 8-9

Weeks 8-9


Week 9 (May 13)
Where the heck did that belly come from?! Almost overnight it looked like I had developed a “food baby”. Since most of my tops were fitted, it was difficult to disguise unless I wore a zip-up hoodie. My jeans became too tight buttoned up, so I had to wear them undone but with a hair elastic holding them closed. Stretchy yoga pants were my new best friend. I hadn’t gained any weight, but the queasiness disappeared!

I decided to tell my mom on Skype the good news and show off my brand-new gut. She completely freaked out–with happiness–and I almost peed myself laughing at her reaction!

Week 10 (May 20)
This week Jordan and I drove to Ottawa to shop for some maternity clothes before he went away for the summer. I found one pair of jeans that fit my tiny frame properly and one long black skirt at “Motherhood Maternity”. Maternity clothes are really expensive and most of them are way too big on me. (No surprize there, as normal clothes tend to not fit me properly either.)

Sciatica started to bother me around this time. I’ve suffered from sciatica over the years so it wasn’t anything new. We also Skyped with the in-laws and Jordan’s grandparents and told them about the baby. The reason we told them so early was because I wanted them to hear the news from both of us and not after Jordan left for a tasking up north. Still need to tell my dad.


Weeks 10-11

Weeks 10-11


Week 11 (May 27)
I sent my dad an email with a photo of my bump and the note to “call me when you get this!” Took him a couple days to check his email, but he called and joked that I must have been eating too many hamburgers. He’s excited!

I had the dating ultrasound this week. I was told to drink 1 litre of water but I only drank 500 mL and thought I was gonna die from the pain in my bladder. Before leaving for the hospital, I peed and then drank a bit more but I still couldn’t walk unless I was bent over. The drive over was supreme torture. During the sonogram, I swear the technologist kept pushing the transducer directly onto my bladder! Finally she told me to go to the bathroom because my bladder was too full. No kidding!? As stated before, Jordan wasn’t allowed in the room and I didn’t get to see the screen while she finished the ultrasound. I wanted a confirmation that there was only one baby in there but the tech said I’d have to wait for the results.

My appointment for May 31st was cancelled due to another woman going into labour. Rescheduled for June 4th. I was dying to know the results of the ultrasound. On the phone, Suki explained that my iron levels were excellent and that everything looked great with the baby! She confirmed that I was 11 weeks along and due December 16th (no surprize there).

Week 12 (June 3)
My midwife appointment with Kilmeny this time was quick and painless. She asked if we had given any thought to prenatal classes, but I honestly don’t think we will go. For starters, Jordan will be away on course during my third trimester (oh the joy of being a military wife) and can’t guarantee that he can come home on specific weekends. She used the Doppler to search for a heartbeat, but it was too early in my pregnancy to hear it. Next appointment was set up for July 4th and would be with a substitute midwife. No new symptoms to report.


Weeks 12-13

Weeks 12-13


Week 13 (June 10)
The skin on my belly was starting to feel stretched and sensitive around this time. Sciatica was causing me pain in my lower back and hips, making stairs difficult (or getting out of bed, or up off the couch, etc). Occasionally I found my ribs aching. I continued to eat as normal, with the addition of extra fruit and vegetables, and successfully gained 4 lbs! Up to this point I hadn’t thrown up or had any bleeding.