Last night I hadn’t had time to express any breast milk so I decided I’d wake to breastfeed through the night to avoid using the soy formula in the pump. Alyssa went to bed at about 9pm and was still asleep at 11pm when she was due for her next feed (at our 3 hour limit). I wasn’t too tired so I decided it was as good a time as any to see if she can get past 3 hours without having her blood sugar levels (BSLs) crash low, following the metabolic teams advise to test every 15 minutes up to 4 hours.
We know she can make it to 3 1/2 hours so we let her sleep until 3 3/4 hours and gave her a heel prick test, and she didn’t fully wake so we decided to leave her for another 15 minutes to see how she coped. Her BSLs actually ROSE from 4.6 to 4.7 which gave us some confidence to leave her a bit longer and when we tested 15 minutes later, 4 1/4 hours after her last feed, her BSL had risen again to 5.1. This just blew us away as we were testing, fearing she’d drop too quickly, so to have her levels rising intrigues us and pleases us.
8pm – Breastfeed
11:48pm – 4.6
12:06am – 4.7
12:22am – 5.1
12:58am – 5.7 (post feed)
She had a good feed and went back to sleep pretty quickly after all the fuss so we decided to set the alarms (a second as a back up) for 4 hours, timed from when a feed starts, and test her again. Again, she didn’t rouse much, so we re-tested in 15 minutes, 4 1/4 hours after her last feed. This time her BSLs went down but only very very slightly, from 4.3 to 4.2.
12:30am – Breastfeed
4:22am – 4.3
4:34am – 4.2
Again, she fed quickly and went back to sleep. We gave Alyssa another heel prick in the morning and she didn’t fall back asleep so easily but we managed to leave her for half an hour. She’d gone down a bit more (but we know BSLs can be lower in the mornings) so we didn’t push her past 4 1/4 hours as she was getting a bit grizzly for a feed.
4:40am – Breastfeed
7:56am – 4.7
8:32am – 4.4
8:45am – 4.3 (Immediately Post Feed)
Essentially through the night we’ve proven that Alyssa is quite capable of fasting for longer than 4 hours. The relief we feel is tremendous. Living life to a strict 3 hour schedule is acceptable for a young baby but maintaining that as she gets older is so daunting and exhausting so adding an extra hour to the feeding regime is just wonderful. And now we don’t have to force her to eat every 3 hours if she’s not hungry because we know she’ll survive a bit longer.
Excited with our new information, I called Maureen (Metabolic Dietitian, Royal Children’s Hospital) to share the data and she was really excited for Alyssa. She was also surprised her levels actually rose for the first test series but was also happy with the other test series even though they were going down, because they weren’t going down fast and they’re within the realms of normal BSLs for a young bub. She wanted to pass the information on to Dr. Boneh and I asked if she could find out the results from Alyssa’s MRI and blood tests, so she hung up, promising to call back soon.
Ten minutes later Maureen called back and said that Dr. Boneh was also pleased with the results and they would be happy for us, using the same tight testing schedule of 15 minute BSLs, to see if we can expand the time to 5 hours. Alyssa wouldn’t go that far between feeds during the day (sometimes it can be every 2 hours) but she could go that long at night and it would mean I’d only need to get up to her once a night for a breastfeed. We’d be able to stop using the pump and remove her naso-gastric tube. We’re keeping the tube in while we test her in case she drops low and we need to give her some polyjoule (glucose formula) but once we’re confident she can continually last 4-5 hours it won’t be as necessary and we are able to put one in if it’s ever needed.
The other great news was that the MRI results came back all clear, showing no signs of brain damage from almost being in a hypoglycaemic coma on day 4. Even though we were sure she was ok, there had still been a lingering anxiety so we can now breathe easy. To make it even better, the blood tests Dr. Boneh ordered (liver function, lactate, triglycerides and uric acid) all came back within the normal ranges and they were happy with the numbers whether they be for a normal baby or one with GSD, so that was great to hear. If we can get Alyssa lasting up to 5 hours, and with all of these positive test results, life is looking pretty good for us considering what we’re dealing with.
Alyssa had her 2 month immunisations this morning, so we’re not going to push her past 4 hour feeds overnight tonight but hopefully over the next few days we’ll have some good news about that. One of the vaccinations can cause her to be sleepy, another to not be hungry and one of them can cause vomiting and diarrhea- all posing complications to a GSD patient, so we’re just keeping a close eye on her, keeping her well fed and not wanting to stress her body out with extended feeding times. She has been a bit unsettled today but otherwise is doing really well. She finally went off to sleep an hour or so ago and is still asleep now. It’s nice to know I don’t have to go and wake her soon to feed her, and that I have an extra hour up my sleeve to let her sleep if she needs it. I feel a tremendous weight has been lifted – it’s amazing what difference one hour makes to my day.