My little girl:
38 weeks (Aug 26)
This was a crazy week! We spent August 26th to September 4th in Ottawa while Khloë had surgery and recovered. Unfortunately we got stuck at CHEO over the long weekend and had to cancel our trip to visit family in Kingston.
I’m not going to go into much detail about our hospital visit because I want to save that for a separate longer post.
On the Tuesday of this week, when we finally received confirmation that the G-tube surgery would take place the following day, we loaded up the car with all our stuff–I think we need a bigger vehicle already–and made the familiar drive to Ottawa. Khloë recovered well after Wednesday’s surgery and only had to spend one night in ICU. We had a much longer stay at the hospital because Khloë hadn’t gained any weight since the beginning of July and the dietician wanted to make sure we had a diet plan in place. When she was finally discharged on Sunday, Khloë had gained enough to satisfy the doctors.
We spent Labour Day relaxing in our family suite at Rogers House or out for a walk around the neighbourhood. Khloë liked being out in her stroller, in the carriage position, watching the sky and trees overhead. We dressed her in T-shirts and pants rather than onesies.
Once again I find myself behind on updates, but I have a really good excuse. We found out on Tuesday of last week that Khloë was scheduled for gastrostomy surgery on Wednesday, August 27th. We packed up the car and drove to Ottawa and have been here for a week now. Khloë was discharged from CHEO on Sunday and transitioned to the care of Rogers House, where we stayed together. There was no point in driving the 2.5 hours home only to have to come back for Neuromuscular Clinic today.
Tomorrow we will be going home, at last! Once we settle in I will prepare updates as quickly as possible. Khloë is doing great and I am looking forward to getting back into our daily routine.
Here we go:
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.
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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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!
On August 9th people around the world lit a candle for those fighting the battle against Spinal Muscular Atrophy and for those who have gained their angel wings.
Some amazing friends and family honoured Khloë and shared their candle photos on Facebook. I put together a collage of all the candles that were lit for my sweet girl:
Feeling in the mood to donate to a charity? Families of SMA Canada helps Canadian families with support and funding. They’re helping us, but more on that later. 🙂
I’m totally loving little baby skirts:
36 weeks (August 12)
It has been two months since Khloë’s diagnosis of Spinal Muscular Atrophy (Type 1). I never thought that we would get through those months without some sort of emergency popping up, but I am happy to say that our baby girl is doing okay! She can still breastfeed, eat pureed foods, laugh, smile, and play with her toys. That is amazing!
On Thursday I spoke with Dawn, the neuromuscular nurse coordinator at CHEO. She gave us the news that Khloë was placed on the emergency elective surgery list. This means that Baby Girl will be getting a G-tube put in within the next few weeks. We don’t have a date yet, but the surgery requires a 3 days hospital stay. We are doing the surgery proactively, as Khloë will eventually lose the ability to swallow. She can still have the G-tube and eat orally.
We had another visit from the nurse this week to finish paperwork.
Khloë weighs 16 lb 4 oz, is 28 inches long, and is still wearing size 3 diapers.