Vivian has been doing well. We are still focusing on upping her intake, so this post is mostly about that (and her output, which you probably aren’t interested in knowing about, but the two go hand in hand, you see). So to compensate for the TMI, you can have some lovely outtake photos that I love, from our attempted holiday photos :)
Back to the intake, though. At this point it doesn’t look like we’ll ever get back to breastfeeding, which I’ve accepted. My boobs don’t want to work like they should, and so my let down is too slow for Vivian now that she is used to the flow of her bottle. She refuses to latch and has for a few months now.
That, plus the weight gain struggles after her wean off the steroids, means the best thing for her is to keep on with the bottle and not really try to get her back to the breast. If we hadn’t had the infantile spasms hit her and the steroids, I think we would still have a good breastfeeding relationship, even if we needed to still supplement with donor milk using a supplemental nursing system.
We were doing well with her intake, but over the past month we have been catching up on Vivian’s 3-month vaccinations, which has resulted in a very unhappy Vivian for the week following each shot.
While she was on prednisolone, we chose not to vaccinate, as the steroids have immunosuppressive effects. Now that we’re catching back up, we’ve chosen to break up the vaccinations a bit so she doesn’t get a heap in one day.
Kids with infantile spasms in the US are often given single vaccinations instead of combo ones, as it’s easier for them to handle and because vaccinations lower the threshold for seizures. They don’t cause seizures initially, per say (although many IS parents think they might), but they can definitely lower the threshold for kids who are already prone to having seizures and those with unknown or underlying seizure disorders. Vivian’s first infantile spasm cluster appeared 6 days after her 6-week vaccinations, so I will always wonder if that is related to her IS somehow.
She got the last of her 3-month injections the Monday after my last post. I think any time we go to get her vaccinations given, I will always be afraid that the spasms will come back. It is nerve-wracking. But so far so good. I haven’t noticed any of the strong startle movements she was displaying in a while, either. Knock on wood there.
The week following this shot, Vivian’s appetite went into a downward spiral, and so did her sleeping habits. It was pretty stressful for all three of us, and in the back of our minds we are always thinking about her intake, so to see her go from averaging about 600-650mls a day back down to 475ml a day for that week was really frustrating.
We decided to up her teat/nipple flow to a level 3 teat (6 months+) in the hopes that it would help us get more fluid into her throughout the day. So far that has really helped, but I know this definitely means the end of breastfeeding. I am still expressing for her, though.
She is able to keep up with this stronger flow with no issues and her averages are soaring up to about 700-725mls now on good days. If we can keep at this, there’s a good chance she will have a nice weight gain next time we head back into the pediatrician’s office.
I realized I didn’t really say much about her last appointment (first week of January) – it was mostly just to check in with Vivian’s weight. She had gained about 450g (not heaps at all), but she grew like 3 or 4 centimeters between appointments, so that was exciting. The nurse didn’t want to record it on her chart because her height was 66.6cm, which had both Ben and me cracking up in the exam room. She changed it to 66.7cm. Superstitions!
The pediatrician didn’t seem concerned about the movements I had been seeing (that aren’t happening now), but our ACC case worker wanted her to give us a referral to see Vivian’s neurologist again. I need to check with the case worker on where this is at because I’ve not received any letter about it.
She also recommended we up Vivian’s omeprazole (Losec) dosage to 20mg a day instead of 15mg, because Vivian was having some episodes where she’d wake up inconsolable at night and we thought it could be related to her reflux. We have dropped Vivian’s Gaviscon way back from 4-6 doses a day to maybe 1 a day if needed, so the omeprazole does seem to be working as it should.
Overall she’s doing really well. Physically, she has pretty good muscle tone in both her arms and legs. A bit high tone in her arms at times. Her head is still not growing correctly though, which does make us sad to know, but we will have to just deal with it as we have to with everything else. It still sucks, though. Acquired microcephaly, it’s called. Where the brain has a severe injury or trauma, which causes it to grow incorrectly or not much, which in turn causes the skull to not grow either.
We also asked about Vivian’s need for lactulose, which helps her have bowel movements. During the steroid wean, Vivian’s intake was so minimal and we were still having to give her 4-6 doses of infant Gaviscon daily, which meant that she got constipated really easily and was having horribly painful, hard bowel movements. We didn’t want to risk her starting to hold on to her poos instead of getting them out, so we started adding lactulose to her daily medication regime.
I’ve read some mixed stories about lactulose. Doctors seem to push it here as something that has no negative side effects in the long run. Parents of kids who have been on it long-term tell a different story, of kids whose bowels don’t learn to empty on their own, who become dependent on this. Of kids who have to move on to stronger medications because lactulose stops working for them. I know with kids that have lower muscle tone, constipation can really be a struggle, and I’m hoping that doesn’t happen down the road for us.
The pediatrician recommended we keep her on it daily, since the last thing we want to do is make it painful to poop. But because Vivian’s intake is up again, and her need for Gaviscon has been so reduced, we are trialing her without lactulose and so far she’s been able to manage without too much discomfort. I think we just went 2.5 days without a poo (pretty normal for breastfed babies), and it was a bit of a push to get it out, but nothing a normal baby wouldn’t do.
“Stop talking about my poo, Mom!”