Sunday morning we woke up with Alyssa having gone 5 hours twice overnight and still maintaining good blood sugar levels. We were up early, ready to drive to Penguin for a family bbq, where Alyssa would be meeting some relatives for the first time so we decided that it would be a perfect day to remove the naso-gastric tube. So out it came – again revealing a most gorgeous little face. It means we now have to give her the antibiotics orally instead of putting it down her tube but she copes pretty well with it.
We headed down to Penguin where Alyssa met Aunty Viv and Uncle Ken, Aunty June and Uncle Colin and got more cuddles with Grandmama. Aunty June was so wonderful and brought us a bed wetting alarm (a mat that goes under the sheet and signals when it gets wet) for us to use to let us know if Alyssa’s tube comes out over night and the pump empties into her bed. Having not used the pump for a few days now we are actually hoping we’ll not have to use it but it’s good to have just in case. It was a really clever idea actually and we were lucky Warren’s aunty sells them.
After having a bbq lunch at Warren’s house, we went to visit my Poppa Townsend – his first time meeting Alyssa – and he thought she was just so precious and had a lovely cuddle. All the photos from this meeting are on my Mum’s camera so I’ll get those soon. I don’t get to see Poppa very much these days so it was a special visit. We then went back to my Mum and Dad’s house for a little while as my other Nan and Pop were coming out for a visit to see Alyssa again. The first time Nan got to visit Alyssa was just after her operation so she was hooked up to a drip and drains and it was an awkward cuddle, so she was very pleased to have a normal baby cuddle. It was definitely a good idea to take the tube out that day.
Alyssa has smiled before but hadn’t been a really big smiler until recently and now we’re getting regular smiles many many times a day – especially Daddy it seems. We’re starting to wonder if the tube had been inhibiting her beautiful grin with all the heavy tape pulling against her cheek, because it seems to have increased since we took it out. It makes me so much more thankful things are going well enough that we are confident to live without it.
We’ve now been tube free ever since and Alyssa continues to feed really well through the day and sleep really well overnight. We’d been setting the alarm for 5 hours and needing to wake her at that time. She wasn’t even being disturbed too much when he gave her heels a prick to test her BSLs – all those nights of being disturbed by nurses taking obs through the night at hospital I imagine. After a few days of maintaining strong BSLs (high 4s and low 5s) after 5 hour blocks, curiosity got the better of us and we started stretching it out adding extra 15 minutes.
We’re thrilled to say that last night Alyssa went for 6 hours without a feed. At 5 1/4 hours here BSL was 4.5, and it actually went up (wow) to 4.7 at 5 1/2 hours. She went back to sleep so I got out of bed with her (a bit scary when it was almost daylight at 5 in the morning) and we waited another 15 minutes. She actually made a big drop down to 4.1 so I was a bit nervous and wondering if I should just feed her but she was smiling and moving and making noises, looking entirely normal and well so I decided to stay up just 15 minutes more to see what would happen. Thankfully she didn’t drop and stayed exactly on 4.1 so that was great news. I definitely wasn’t keen to push past 6 hours which didn’t matter as she definitely wasn’t going to let me wait any longer – she’d been pestered enough and wanted a feed so she fed well and went straight back to sleep. She did wake quite hungry only 3 hours later but that didn’t matter – having lasted 6 hours overnight was just so wonderful. I called Maureen (metabolic dietitian) again this morning and she was really thrilled for Alyssa.
It has really made us optimistic that things are going to be ok. It has made us even more eager to get the results of the genetic testing back. But it has also made us nervous of other problems with her liver. So we’re simply taking each day at a time and being thankful that we can feed her like a regular 2 month old baby and not have to stress that we’ll be calling for an ambulance past 3 hours. This is shaping up to be one very special christmas!
Today we had a visit from Shelle and Kias. Shelle went to uni with Warren and Kias is her 3/4 year old son (forgive me for forgetting how old Shelle!) She had been waiting to meet Alyssa so she enjoyed some lovely cuddles. Kias kept Liam well entertained which Liam thought was a real treat as well – he doesn’t play with kids near his own age terribly often.
Tomorrow we go to see Mr. Edis who performed Alyssa’s arm surgery for a check up and we thought we might drop in on the staff on the children’s ward, 4K, to share with them our good news about the MRI, the blood tests and her feeding times. No doubt they will be as thrilled as us.
(I’ve added more photos of the gorgeous princess on my Flickr account if you want to check them out: http://www.flickr.com/photos/donnagem/)