Khloë: 10 months old (44 weeks)

Note: I am wayyyy behind but a lot has happened in the past month that has not allowed me to update regularly!

My baby gets a little older every week:


44 weeks (October 7)

44 weeks (October 7)


Khloë came with Jordan and I to our young adults group at church on Wednesday evening. I was hesitant to go because I wasn’t sure how cranky she would get near bedtime. I can’t leave her in the nursery with the other kids anymore–can’t risk another kid touching her toys and then her putting them in her mouth–so she stayed with Mommy and Daddy during the group. She was happy and chatty and made everyone smile!

Thursday morning we went to Pembroke Hospital to pick up Khloë’s AFOs. They are molded hard plastic braces (with cute butterflies!) that she will wear for 1-2 hours a day for two weeks, as a breaking in period, and then we are to slowly increase that time. The braces are meant to correct the slight curve to her feet.


Minnie Mouse

Sweetness

I ordered two bottles of sambucus (black elderberry extract) from Swanson Vitamins and started giving Khloë 5 ml once a day to boost her immune system. Many SMA kids are given this extract and I decided we should try it out.

At 3 am Saturday morning I woke to the sound of Khloë crying. I checked on her and felt wetness on her shirt. Turning on the mini flashlight we keep by her crib, I saw she was covered in vomit. I called to Jordan that she’d been sick, and as he came into Khloë’s room she started to vomit again (through her nose and mouth). I quickly turned her on her side so she wouldn’t choke and Jordan quickly suctioned out her mouth. Her breathing looked normal, but there was a lot of thick mucous in her vomit. I stripped off her pyjamas and moved her to the change table while Jordan pulled the sheet and mattress cover off the crib and tossed it in the laundry basket. Then I attached the pulse oximeter probe to one of her toes to check her o2 levels. They hovered around 94-96, with heart rate high 140-150s. She ended up puking a few more times. We were concerned enough that we decided to bring her to the ER in town. Once we got there, though, she seemed better. The doctor ordered an x-ray which showed pneumonia was clearing up but wasn’t gone. He was unsure as to what was causing her to vomit because she had no fever or other symptoms. He suggested we stop giving her sambucus for a couple days to see if that was the culprit, and then re-introduce it in smaller amounts. By the time we got home, it was after 7:30 am. We all went back to sleep for two hours. When Khloë woke again, I let her nurse and then did some chest PT. She threw up one more time a little while after that. I kept a close eye on her for the rest of the day, and after a great nap in the afternoon, she seemed back to normal again.


New hooded towel

And then Sunday morning she vomited at the end of her feed! This time it was very yellow and looked like bile. I vaguely remembered reading something about bile in the enteral feeding booklet we were given at CHEO but I couldn’t find the information I was looking for. For the rest of the day she was fine. A couple times, when I vented her G-tube, it looked like bile in the syringe. We ended up going to our friends for turkey dinner and once again Khloë was perfectly fine through her feeds and was in good spirits. We got home around 8:30 pm and I realized I hadn’t yet changed her G-tube dressing. When I unwrapped it, I saw that the tube measured at 6 cm (instead of 10 cm). I slowly pulled it out to 8.5 cm but there was quite a bit of resistance so I left it. I started to think that maybe the vomiting and bile had something to do with tube migration. Jordan called General Surgery at CHEO and spoke with a doctor and the doctor told us to bring Khloë to the Pembroke Hospital to have it checked out. That’s a 30 minute drive and neither of us wanted to bring her back to the ER. We figured we would try once more to pull the tube out to 10 cm, and luckily this time it worked! No more vomiting and no more bile!


Playing the xylophone

Daddy also taught Khloë to “play” her toy xylophone. She loves tapping at the keys!

We received the brand-new suction machine this week, along with a few enteral feeding and suction supplies I had ordered. Our nurse coordinator from CHEO called to check on Khloë and remind us about next Wednesday’s appointment. And we decided to cancel our upcoming weekend trip to Kingston because my mom was still sick.

Khloë: 9 months old (42 weeks)

She’s getting close to the 10 month mark!


42 weeks (September 23)

42 weeks (September 23)


Khloë was sick all week with a cold. Anytime she was upright in a sitting position she would cough and choke, so this week’s picture was taken laying down. My mom was here for the week and did the cooking and dishes, etc, while we took care of our sick daughter.

Every day Jordan and I spent a lot of time suctioning and coughing her. By “coughing”, I mean using the CoughAssist to simulate a strong cough (Khloë’s is weak and she can’t bring up mucous like a normal child or adult can). She absolutely hates being suctioned; she would clamp her mouth shut as soon as the machine was turned on! Unfortunately, it was something that had to be done because if we didn’t suction out the mucous, she would choke. In between these treatments I would do chest therapy by tapping percussor cups over the lobes of her lungs and then propping her bum higher than her head (postural drainage). This is meant to loosen mucous and drain it out of the lungs into the throat, to be suctioned out.

As you can see, an illness as simple as the common cold is a scary thing for a child with Spinal Muscular Atrophy.

To help her sleep, I gave her 1 ml of Advil. If she was still feeling awful after a few hours, I administered the same dosage of Tylenol. The great thing about her G-tube is that the medications can go right in the tube!


Stripey

WILD collage

On the morning of Wednesday, September 24th, she gave us a scare. We noticed her breathing was different; she was working a lot harder to get air and kept coughing. Her colour looked fine. I spent 20 minutes suctioning before deciding we needed to take her to the local emergency room. I held her in my arms for the drive, suctioning the whole way, while Jordan drove. Upon arrival at the hospital, I explained my daughter has a neuromuscular disease that affects her breathing and that she needed to be seen ASAP. We were called right in to see the triage nurse. By the time we saw the doctor, Khloë was all smiles and breathing normally. The doctor explained that she most likely had a mucous plug that I was luckily able to dislodge on the drive over. To be on the safe side, he sent her for a chest x-ray. The Pigg-O-Stat is an evil contraption that scares the crap out of me. I hate seeing her in that thing for x-rays. At one point the technician asked me to put on the lead vest and support Khloë’s chest while he took a picture of the side profile. We were told that her lungs and trachea looked clear and were sent home.

Before we left the doctor told us these wise words: “Khloë has SMA, she will die before she’s two. You will just go through this over and over.” Seriously? We are her parents, I’m pretty sure we understand her diagnosis.

We made our exit and headed home. Mary from Infant & Child Development popped in to make sure Khloë was doing okay. She was supposed to stay and teach more infant massage, but Khloë needed a nap pretty badly. Then Dawn from CHEO called and asked us to come on Friday to see Dr K, one of the respirologists. And so off we went on Friday, all the way to Ottawa, after saying goodbye to my mom. I wasn’t comfortable with having Khloë in the car seat and she did have some coughing episodes. I sat in the backseat and suctioned her when she needed it.


Flower power

Mommy and her girl

Khloë

The appointment was sort of pointless. Dr K asked us the same questions as the other doctor. Listened to her lungs. Explained how to count her respiratory rate. After he left, Carlie (respiratory tech) gave us our Masimo Rad8 pulse oximeter and showed us how to use it. Finally! She also demonstrated deep-suctioning through her nose, which Khloë absolutely hated!

What a lonnnnnnng week. And I was sick too.


Pink collage

But that’s not all. On the 29th Dr K called and said that the x-rays showed pneumonia. She called in a prescription for amoxicillin for Khloë and we started the antibiotics right away.

Khloë: 9 months old (41 weeks)

The latest photo:


41 weeks (September 16)

41 weeks (September 16)


Khloë had her 9 month well-baby check-up with Dr K. She weighed 17 lb 3 oz and measured 29 inches long. What?! Wasn’t she 28 inches only a few weeks ago? I swear, this child grows overnight! I noticed her pyjamas, which she hasn’t been wearing that long, were getting tight but I thought I was just imagining the growth spurt.

I pointed out that Khloë’s yeast problem on her wrist is still an issue and now looks infected. I have to pick up a prescription for mupirocin, an antibiotic ointment, to clear up the infection. After seven days I should be able to go back to using the clotrimaderm cream on her wrist.

We also discussed Baby Girl’s upcoming vaccines. She’s eligible to receive the RSV (Respiratory Syncytial Virus) shot. RSV is a virus that spreads by coughing or sneezing and is like the common cold but can cause bronchiolitis or pneumonia, both which could be fatal for Khloë. She also needs the flu shot and then the regular 12 month vaccines. However all these shots need to be spaced out. We still aren’t certain when Khloë will be given the RSV vaccine. I’d rather not have to go to Ottawa every month to get it.


A bath in her new chair

A bath in her new chair


On Wednesday we had a demonstration of infant CPR at Prenatal Nutrition. I’m not sure I’ll remember what to do in an emergency, though! The demonstration was to give us a taste of what the official St John Ambulance CPR course is like.

Later in the week we drove to the Pembroke Hospital for our appointment with Ralph. He made fiberglass casts of Khloë’s feet so that he can make the plastic AFOs for her. These contraptions are worth $1800. No, they are not made of solid gold, but of plastic. Funny, eh? Luckily ADP will cover a good chunk of that. I really hope ACSD approves us for 100% coverage.


Being fitted for AFOs (iPhone)

Being fitted for AFOs (iPhone)


On Friday a respiratory tech from Kingston drove up to see us. He came all that way to fill out paperwork about the CoughAssist. The bonus was he showed us how to unlock it and change the settings.

Around 1 am Friday morning Khloë woke up crying. I discovered she had a stuffy nose and felt warm to the touch. By 5 am she wanted to be out of bed but clearly didn’t feel well. I couldn’t believe she already had her first cold of the fall season! I cuddled with her on the sofa and she ended up falling asleep for a half hour. The day before I had assumed she was teething since her cheeks were red and warm, but she didn’t register a fever on the thermometer. Turned out to be a nasty cold instead.


Oh my love

Oma's visit

My mom arrived Monday afternoon. She planned to stay the week, even with Khloë sick; she was a huge help! And of course Khloë was happy to see her Oma. Oma was the lucky one who discovered the second tooth that had popped through! Teething AND a cold, brutal. In 9 months, this is her second illness and I hope she pulls through it. I’ve had to suction mucous out of her nose and mouth quite a lot and now she hates the machine. After talking with another SMA mom, I decided to use the CoughAssist as well to help bring the mucous up so it could be suctioned out. Khloë’s cough is weak and this machine helps push air in and pull air out, simulating a strong cough.

SMA: Khloë’s gastrostomy surgery

On Wednesday, August 27th, Khloë was scheduled for gastrostomy surgery. The surgery was planned proactively because we know that eventually, as part of the progression of Spinal Muscular Atrophy, she will lose her swallow and require a new way to be fed adequately.

We found out Tuesday afternoon the date and time of the G-tube surgery. Luckily we had most of our stuff already packed. Before we left, we received a couple phone calls: the first one changed the surgery time from 8:30 am to 10:45 am in order to snag a room in the ICU, and the second was just to confirm we understood Khloë’s fasting guidelines. When we arrived in Ottawa, we checked in at Roger’s House and spent the evening playing with Khloë and watching Netflix.

The following morning we were up early. With a surgery time of 10:45 am, Khloë began fasting at 6:45 am. We headed over to CHEO to register Khloë and then waited around in a special room where no one is allowed to eat or drink. The movie “Frozen” was playing for the few kids in there. Even though she was starting to be hungry, Khloë surprized me and didn’t fuss too much.

Finally, at 10 am, we were seen by a nurse. Khloë weighed in at 15 lb 13 oz. We dressed her in a pair of pink striped infant hospital pyjamas. She was then given a dose of Tylenol. The surgeon, Dr Bass, came in and spoke with us about the surgery. I gave Dr Bass the SMA protocols for surgery; he actually read them over and did his best to set our minds at ease that everything would be fine. Dr Silver, the anesthesiologist we had seen on Friday, also popped in to see us. By 10:30 am we were being led to the OR and had to say goodbye to Khloë. It was so hard to hand her over to the nurse. I gave her lots of kisses and told her we would see her when she woke up. She had no idea why Mommy was handing her over to a perfect stranger, but she wasn’t too upset about it.


Hospital pyjamas (iPhone)

A nurse brought us to the waiting room. I asked if there was a room I could go to in order to pump breastmilk privately. I had a cooler bag and ice packs with me and a single electric miPump. I left Jordan in the waiting room and followed the nurse to the Ronald McDonald ICU waiting room. I was given a special pass to use the waiting room. Inside there was a Lactation Room with bottles for milk storage. I used that room numerous times that day!

After the longest hour and a half of our lives, Dr Bass came to get us at 11:55 am. He assured us that surgery had gone smoothly and so far Khloë was doing well after extubation. He brought us to the Ronald McDonald ICU waiting room and told us to wait there; we would be allowed to see our daughter in about 45 minutes, or when she woke up.


Sleeping angel (iPhone)

When we were finally allowed to see her, an hour later, she was still sleeping peacefully. She had opened her eyes a bit earlier and cried a little before going back to sleep, one of the nurses told us. Seeing her face after surgery was heart-wrenching; she looked so angelic but I still felt terrible that she had gone through such a surgery. I wanted to scoop her up in my arms, but couldn’t. Lots of different wires were attached to her. I noticed that her O2 saturation level was hovering around 96 and not her usual 98. Throughout the afternoon her sats would vary from a low 92 to a mid-range 96. I hoped it was just an effect of the surgery.

When Khloë opened her eyes and saw Jordan and I, she pouted and cried, but quickly stopped, smiled, and fell back asleep knowing we were right there with her. Off and on she would wake and sleep. Around 5:15 pm she was moved to another ICU room where she and I would spend the night.


After gastrostomy surgery

Eating the pulse ox cord

The RN assigned to Khloë’s care, Karen, was amazing! We loved her. She was friendly, helpful, and chatty. She even advocated for us when we were getting concerned about Khloë’s continued fasting–it’s dangerous for an SMA child to fast longer than 6 hours, and 8 hours was really pushing it. Muscle breakdown occurs much quicker in SMA kids and I was worried she would lose some of her strength if she fasted too long. Dr Bass said that normally a gastrostomy patient wouldn’t be given any food, other than glucose through IV, for 24 hours after surgery; however he would allow Khloë to be given breastmilk 8 hours after the surgery.

At 7:30 pm, just shy of a 13-hour fasting period and many conversations with Karen about the importance of giving our daughter nutrition as soon as possible, we were given the go-ahead to feed Khloë expressed breastmilk orally, by syringe. All she managed to drink was 10 ml, a ridiculously tiny amount, but it was something. She was tired and didn’t want to spend the energy trying to drink from a syringe.

Jordan and I left her in the care of the night nurse and walked over to Ronald McDonald House to make dinner. Once we saw Khloë after surgery, Jordan had moved our belongings from Rogers House over to Ronald McDonald House. We made Kraft Dinner and chicken noodle soup.

At 11:30 pm, Baby Girl managed 30 ml of expressed breastmilk (EBM). It took an hour and a half to get that much into her; syringe-feeding is difficult! I could tell she was hungry but the doctor didn’t want me to give more than that amount in case her stomach expanded too quickly. I continued to ask if I could nurse her, but because there is no way to know the exact amount she would drink that way, Dr Bass said “Not yet”.

By early morning, I was finally allowed to breastfeed! My little girl was starving–and probably thought she was never going to get to nurse ever again!–and she drank for 25 minutes straight.

We left the ICU on August 28th and were moved to another wing. The nurses we had were great, but the ward was very noisy and Khloë (and Mommy) had a hard time sleeping. We hoped to go home as soon as possible because it was Labour Day weekend coming up.


Doing great after surgery (iPhone)

Hospital set-up

My little trooper

Her IV was removed August 29th since she no longer needed the extra glucose. The extra fluid was causing her diapers to leak everywhere. She had begun to feed by G-tube the night before. I would breastfeed her and then we would give a 2 oz supplement of EBM by G-tube with the Kangaroo feeding pump. She tolerated her new feeding schedule very well.

After a frustrating discussion with two dieticians and a meeting with Dr Bass, we came up with a temporary diet solution. The main concern was that Khloë’s weight was down compared to our previous Neuromuscular Clinic visit; she could not be discharged until she gained weight. We decided that I would allow Khloë to nurse and then tube-feed 2 oz EBM every 3 hours. While she was being fed by G-tube, I pumped milk with the hospital’s Medela. Overnight she was tube-fed Enfamil A+ formula for extra calories. My heart broke a little when we started that first formula feed, but I understood the benefits.

By August 31st, her weight had gone up to 16 lb 5 oz. The general surgery team was satisfied with the weight gain and discharged Khloë into the care of Rogers House. Our rental Kangaroo Joey enteral feeding pump and supplies arrived and we moved out of CHEO and over to the relaxing, stress-free atmosphere of the family suite at Rogers House. It sucks that we were stuck in Ottawa over the long weekend, rather than with family in Kingston as we had originally planned, but there was no point going home since Khloë had Neuromuscular Clinic in a few days’ time. We were also given a few cans of Enfamil A+ concentrate to get us through the long weekend!


Chillaxing at Rogers House

Happy girl

Before we were allowed to leave, we had to be confident with changing Khloë’s G-tube dressing and with enteral feedings. I think Jordan was much more confident than I was, but the hospital environment was stressing me out too much to really feel like I knew what I was doing. As soon as we were in our new location, though, I was able to set up feeds by myself!

We are so thankful that our daughter got through her first surgery with no ill-effects! She has so many people praying for her and sending positive thoughts; we appreciate this so much. Khloë is such a sweet, special girl. Anyone who meets her instantly falls in love! In the words of the anesthesiologist, who made a special visit to see Khloë before discharge, our little girl “captures hearts”.

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!