Well, we’ve made it past the 2-week mark of no seizures! 16 days today. It’s really fantastic. I again don’t want to jinx anything, so don’t want to dwell on it!
The days are blurring together and we are so exhausted. Emotionally I am all over the place. Vivian is doing well, but she is definitely not the happy, smiling baby she was before we started the steroids. It’s been days since we’ve gotten a smile out of her and she is just so hungry *all* the time. Like hulk hungry. Hangry even. I’m surprised she hasn’t turned green and split her onesies yet. She’s cat napping instead of getting good naps in and on top of that, has stopped sleeping through the night in two good chunks. Any time she wakes, she is hangry, no matter if she’s been asleep 3 minutes or 30 minutes. It’s like she has no off switch on her stomach.
This means she is guzzling through the donor breast milk we had stashed and I have spent most of the past week stressing about being able to meet her feeding needs. One of our donors is going back to work this month and the other two screened donors who helped while Vivian was in hospital have had things come up which mean they can no longer donate currently either.
We got very lucky and found a Mom up in New Plymouth with a decent frozen stash, along with a super lovely mother out in Leeston who read Vivian’s story and wanted to help, so we are good for milk for the next little while! I am hoping this is enough time for me to source a few new donors so we are not so reliant on one person’s supply. I so wish I could produce more milk for Vivian. It is the most awkward and humbling experience to ask someone else to share their baby’s food with Vivian. I am forever thankful to the ladies who have helped us thus far in making sure Vivian has breast milk and would love to continue using breast milk as long as we possibly can.
On top of Ben and I being sick last week, Vivian did end up catching whatever virus it was, and we ended up taking her into the hospital last Thursday to get checked out. Normally I probably wouldn’t have taken her in, but her doctor advised us to bring her in if she gets sick while on the course of steroids. She did get the all clear, but she developed a pretty chesty little cough and has since lost her voice (something Ben isn’t particularly upset over). She also has a case of thrush in her mouth and on her bum, so we have to treat her for that. Apparently steroids can mess with babies’ systems in that way as well, and thrush/yeast infections are quite common while on steroids.
On Saturday, we caught up with some friends who helped change the oil on our car and ate yummy donuts. It was neat getting out of the house with Ben, and not to a doctor’s appointment. Vivian was pretty good during that visit and even took a nap on me! :)
Sunday, a lovely lady came to see us and dropped off some breastfeeding supplements we ordered from the US. Although we’ve only known her a short while, she is really awesome to talk to and is a great source of positivity and encouragement about all things breastfeeding-related. She also referred us to Bellyful, and we are waiting to see if we can be accepted twice, as they already helped us out with some tasty meals back in July.
Monday, we met the team at Champion Centre; we start weekly appointments there next Monday. The specialists seem really wonderful and I hope that Vivian thrives with their help. I am still very disappointed with how long the referral process took with this, because I’m now due back to work on the 22nd of this month. I get to go to ONE appointment there with Vivian. We have been home for almost 10 weeks now. I know the important thing is that she is going at all, but I wonder how much easier our journey could have been thus far if we had gotten the support we needed from the get go with this, especially when we were struggling so, so hard with Vivian’s feeding.
Tuesday, Vivian and I had lunch with a couple local Moms with whom I started my pregnancy journey. They have been a strong source of support for Ben and I and so much fun to get to know online. It was awesome meeting them in person and talking with them and seeing how lively their little ones are. At the same time, it was hard to see how much their babies are doing and where Vivian is in comparison. It’s not like I actively want to compare her to them. It’s just very hard to ignore when it’s right in front of me. I got a bit unexpectedly teary while I was there and felt pretty embarrassed about it. Hoping that outings and catch-ups will get easier, but I think it will take me a long time to see other babies and not feel slightly sad/disappointed/envious/etc. I think any new mom of a special needs child would feel the same way for a bit, at least in the beginning.
Yesterday, Vivian had an audiology appointment for more hearing tests and at the same time I had my follow-up with the OB who performed my cesarean section. The hearing test didn’t go so well this time because Vivian didn’t want to sleep while we were there and we were only able to get testing done on one of her ears in the last 15 minutes of the 2.25-hour appointment. Directly after that appointment, we were due at a neurology follow-up where Vivian’s blood pressure and urine were tested. Blood pressure was in the high-end of normal, urine was clear, and we were told that Vivian’s EEG showed no abnormal/epileptic activity. If we continue to see no seizures, we may be able to start weaning Vivian off the steroids at 4 weeks instead of 6 weeks, which is awesome news.
Because there was no abnormal activity on the EEG, the registrar said that if Vivian’s seizures were controlled by the steroids, they would not be doing another EEG. I’m not sure if this is normal for IS treatment or not. We have another weekly neuro appointment next Wednesday, so I will be asking for more information about the EEG results then, because although there was no seizure activity, I’d still like to know what else it showed. Hopefully we will actually see the neurologist this time, instead of his registrar. She was really nice and did answer all of the questions we had at the time, though.
Today we have a Te Puawaitanga nurse appointment for a well child check. Thank god this one is at home; we all just need a day at home after a busy day like today. Vivian was so over tired by the time we got home. Not a happy camper! But trips out are getting easier. Maybe it’s an age thing? She does still seem to be easier to settle now than she was a month ago, thank goodness.
So, lots of good points over the past week to be thankful for.
I just want to sleep. For a very long time. I know this will never be possible, ever! I try not to mourn the days of being able to just nap as long as I wanted! At least I know THAT is at least a normal part of parenthood.