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.

SMA: Oliver’s diagnosis

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.)


Oliver's first visit to meet family doctor

Oliver’s first visit to meet family doctor


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.


Baby boy

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!

Third trimester: Weeks 36 – 37

Week 36 (October 5)
Braxton Hicks contractions calmed down this week compared to last week. But heart burn kicked up a notch; I had to go buy some fruity Tums.

Amanda emailed me our maternity photos. They turned out fabulous! 😀

I had an appointment with Suki on Friday. She told me that my GBS swab came back positive. Crappy. I had hoped for one less thing to worry about. My lower belly had been feeling much heavier, and Suki confirmed that baby’s head had engaged. No wonder! Blood pressure was 110/65, fetal heart rate strong and steady, and fundal measured at 37 cm.

Also, she gave me the results from my 33 week ultrasound. Apparently the baby measured in the 86th percentile and weight was estimated at 5 lb 7 oz.

That afternoon I called our genetic counsellor and informed her that my due date was getting closer. She said to call her after the baby is born and she will rush the results of the blood test.

Total wight gain was 39 lbs. I’ve officially surpassed the weight I gained with Khloë.


Weeks 36-37

Week 37 (October 12)
Still incredibly uncomfortable and suffering from heartburn at night. Ugh. Tums were my best friend.

Jordan came with me to my midwife appointment this week. His first one all pregnancy! I wanted him to drive me because driving causes me pain in my pelvis. I hate you, SPD. Anyway, blood pressure was 112/66 and fundal at 38 cm. Head still engaged!

When I went to bed on Saturday I had one contraction. Literally just one. It started in my back and the cramp spread to my stomach for 20 seconds.

First trimester: Weeks 12 – 13

Week 12 (April 20)
I’m getting closer to the second trimester! Nausea improved this week, but I threw up my prenatal vitmain no matter what time of day I took it, even with food. I think I’ll stop taking it. The anatomy scan is booked for June 11th in Pembroke. If baby cooperates, we can find out if we are having a boy or girl! I don’t have a gut feeling for a specific gender.

On Monday I had the telemedicine conference with our genetic counselor from CHEO. I asked her if the baby’s cord blood can be used for SMA testing but she said it’s not a good idea as cord blood contains some of my DNA. So the plan is have baby’s blood drawn before we leave the hospital. I have to contact her a month before my due date to remind her, and then once we get home from the hospital contact her again so that she can make sure the test is rushed and double-check that SMN2 copies will be checked if the baby does have SMA.

So far I’ve gained 4 lbs. And my next midwife appointment is May 14th.


Weeks 12-13

Week 13 (April 27)
Some websites list Week 13 as the second trimester, and some say Week 14. I’ll keep this post as “first trimester”.

My belly has popped out a bit more this week. No nausea which meant I was able to eat a better variety of food. On Wednesday I went to Prenatal Nutrition group and we made a cold tuna potato salad which was surprizingly good, not to mention filling. And I ordered a new set of unisex Aden & Anais muslin swaddling blankets (white with silver, gray, or beige stars) and a set of gray bibs.

We have picked out a boy name, and have two options for girl!

First trimester: Weeks 8 – 11

Week 8 (March 23)
Not much to report for symptoms. I’ve been able to eat food without feeling queasy afterward, but I still vomit after taking my prenatal vitamin. On Wednesday I went to my Prenatal Nutrition group at FEN. All the same girls are there.

At the end of the week I emailed Claire Goldsmith, our genetic counselor from CHEO. She wants us to have a video conference when Jordan and I return from Florida to discuss having the new baby tested for SMA. I’m interested to know if cord blood can be used or if it has to be a blood draw.


Weeks 8-9

Week 9 (March 30)
Florida!

Week 10 (April 6)
Florida and Kingston!


Weeks 10-11

Week 11 (April 13)
During the past couple weeks, on our trip, I would feel queasy in between meals again. I had to keep snacking. Restaurant food didn’t always agree with me. But I still managed to have a good time. The most exhausting part of the trip were the full days spent at EPCOT and Magic Kingdom. When we returned to Ottawa, we drove to Kingston and stayed at my mom’s to prepare for Khloë’s burial on April 11th. That day the weather was beautiful (after a rainstorm the previous day). Afterward, we held a small reception for friends and family at the church we attend in Kingston.

April 16th marks three months that my baby girl has been in Heaven. It is the strangest feeling to be a mother but to not have a child in my arms. Even with the new baby, there will always be that blank space where Khloë should be. She is in my heart.

I also had a midwife appointment mid-week. Suki will be sending Claire a referral for the genetics appointment. My blood pressure is still low at 90/60, but Suki wasn’t concerned since it seems to go up a little at each visit. She also found the baby’s heartbeat: 160 bpm.