These are the photos I took of Oliver for Valentine’s Day!
I love taking his photograph! Those big smiles are precious!
These are the photos I took of Oliver for Valentine’s Day!
I love taking his photograph! Those big smiles are precious!
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!
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!
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.
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.
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.
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!
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.
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!
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.
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.
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.
In the evening of November 11th, at a couple days before he turned 3 weeks old, we received a phone call from the geneticist that Oliver was diagnosed by blood test with Spinal Muscular Atrophy. The test showed he was missing the SMN1 gene and had two back-up copies called SMN2. Most likely he would be a Type 1, like his big sister.
We had to make a decision very quickly.
While I was pregnant, someone from an SMA support group contacted me with information about a clinical trial called NURTURE, a phase two study sponsored by Biogen for presymptomatic newborns diagnosed by blood test. This particular study wasn’t available in Canada yet but the closest centre was in Boston, Massachusetts. (Phase three trials of the same drug on babies with symptoms have been ongoing for awhile with very good results.)
The next day, after we had digested the news and decided that we were willing to do anything for our tiny baby who was quickly losing the use of his legs, I sent an email to the study coordinator at the Boston site. She replied fairly quickly, stating their interest in Oliver, and we FaceTimed with her and Dr Swoboda almost right away. I was surprised–and relieved–that they made contact so quickly.
After an hour long discussion with Dr Swoboda (neurologist, SMA specialist) about my pregnancies, both babies, and aspects of the trial, Jordan and I decided it was in Oliver’s best interest to get the drug ISIS-SMNrx.
The doctor told us that it was imperative for her to assess Oliver as soon as possible. We already had an appointment for him to see Dr M, neurologist, at CHEO on Friday. She said that if we could be in Boston by Sunday, she could asses him Monday, November 16th. If Oliver qualified, he would receive his first intrathecal injection by Thursday. Could we do it? With Jordan on parental leave, YES!
As of now we have already completed three trips to Massachusetts General Hospital for the NURTURE study. After two injections, Oliver started to show more strength! By the time we arrived for his third on December 17th, Dr Swoboda was impressed with the progress he had made in the last two weeks.
In a short period of time Oliver’s disease had progressed rapidly. He couldn’t hold his head up or move his legs very much, and only used his forearms rather than his whole arm. With two doses of SMNrx under his belt he began holding his head up again, although for 5-10 seconds at a time, began moving his legs more, and lifts his whole arm up and keeps them held to his chest when rolled side to side. It’s such a huge difference and we are so happy he’s getting this drug!
Oliver’s next injection is at the end of January. Now that we are done travelling for a little while, I will try to write some updates about our precious baby boy who is 8 weeks old now!
While Skyping with my mom on October 22, I felt some mild cramps. I didn’t think much of it, but I did mention to her that it felt like period cramps. Later that night I felt them again but a little stronger and they continued until 4 am. I realized they were contractions because they were regular. I tried to get some sleep.
By morning (October 23) I felt that I had had some rest. Jordan went to work but was supposed to come home at lunch time to take me to my midwife appointment at 1:30 pm.
At 11:15 am I went to the bathroom and lost my mucous plug–so gross! Fifteen minutes later, contractions started up again, but stronger than the previous nights’. They remained strong and steady at 4 – 5 minutes apart and 30 – 45 seconds long. After an hour of this, I texted my mom to let her know. I wasn’t sure if I was really in labour… October 23 marked 38+4 weeks. I called Jordan and told him he should come home.
By 1 pm mom decided she would start driving up from Kingston because she really wanted to be a part of Baby Boy’s birth. At that point I called my midwife and told her I was having regular contractions and asked if she wanted me to go to my appointment. She told me to stay put and she would come to check my progress at 2 pm.
Suki arrived around 2 pm. She checked my cervix and did a membrane sweep. Only 1-2 cm dilated! She also confirmed I really was in labour and offered me the use of a TENS machine to manage the pain. I figured I would give it a try. She decided to go home to rest and told me to head to the hospital when the pain is getting too much to handle, and to call her when we leave.
By 3:30 pm the contractions were pretty intense and I had to really focus to breathe through them. They were coming 3 – 4 minutes apart and about 1 minute long. Another hour later, I decided we needed to get going! I knew we had a 40 minute drive ahead. My mom just happened to pull in our driveway at that time too, so she hopped in our car and came with us!
We arrived at the Pembroke hospital and Jordan grabbed me a wheelchair. We had to make a stop at registration but quickly headed up to Labour & Delivery. Suki hadn’t arrived yet, but the on-call obstetrician Dr M showed me to a delivery room. A nurse came in and hooked up the belly monitors.
My midwife showed up at 5:30 pm and checked my cervix: 3 cm dilated. At this point we discussed what I wanted for pain relief; I was really struggling with the contractions and was already feeling tired. We agreed an epidural would be a good idea and she went to talk to Dr M, as an epidural means a transfer of care to an OB.
Around that time a nurse came to start an IV and take my blood. I was GBS+ which meant I needed a round of antibiotics (clindamycin). A fluid bolus was also administered for the epidural.
Two hours later, at 8 pm, feeling like I was gonna die from the pain, the anesthesiologist arrived! Suki joked to Jordan, “Here comes the man your wife is going to want to marry!” And boy was she right. 😂 He explained the risks of an epidural to me, I replied “Let’s do this!”, and he had that epidural in super fast!
My body slowly began to go numb; he said it would take about 20 minutes. Both my legs were completely frozen, but I could wiggle my toes. I couldn’t feel the contractions except in a small fist-sized area on my lower left side.
Dr M checked me at 8:30 pm and voila, 6-7 cm! Finally my body was doing its job and dilating my cervix. The catheter went in at this time, as well as a scalp monitor for the baby. Baby Boy was so active during labour that the belly monitor was having trouble picking up his heart rate so I agreed to the monitor being attached to his head.
Fully dilated by 10:10 pm! This was it! Soon we would meet our little boy. Even though I had been transferred to the OB, Suki still caught the baby. At 10:42 pm, Oliver Kaleb Azariah was born and placed on my chest. He was completely covered in vernix! We waited for the cord to stop pulsating, then Daddy cut the umbilical cord. And guess how much my little guy weighed–a whopping 8 lbs! He was 21 inches long and had a healthy cry. Head circumference was 35.5 cm.
I was so astonished to have birthed an eight pound baby!
After Oliver was cleaned up and weighed, I let him breastfeed. He knew just what to do, my little milk guzzler.
We were discharged the next morning and brought our sweet little boy home. 😀