Hanging in there

We left off from my last post determined to get Vivian on track with some solid weight gains. We got her steadily eating three solids meals a day along with her bottles, and we were all set to get her weighed again this past Tuesday, but unfortunately Vivian had other plans.

Last Saturday afternoon she started throwing up everything she’d eaten for lunch, and proceeded to throw everything she drank up after that.

Vivian ended up pretty dehydrated. It was pretty scary how quickly she went downhill and how lethargic she became. We ended up in hospital on Sunday morning and we tried syringing pedialyte into her mouth every five minutes to hydrate her. She would go for about 45 minutes at a time and then throw everything back up, so they admitted us Sunday afternoon into the children’s ward. One night with a nasogastric tube and she perked back up again enough to take a bottle and managed to keep it down, so we got to go home on Monday afternoon.

 

Thankfully we were only in hospital for a day, but Vivian lost pretty much all the weight she’d gained (and then some) over the past three weeks in those 36-48 hours. We cancelled her weigh in and will probably reschedule next week. We think her tummy is still pretty sensitive though, because she will randomly cry and bring her knees up like she used to when she had really bad gas.

I think we have been very lucky that this is the first time she’s been really sick though. Knocking on wood in hopes that was all of it for this year. The hospital thought it was a bug since it came on so suddenly, but we have no idea where she would’ve picked it up. We don’t know anyone that has had a gastro bug.

Since the hospital stay, Vivian’s sleep has been all over the place and she’s been extra grumpy. It has not been fun times here! Her fifth tooth also sneakily came up at some point (she now has three bottom teeth). She’s only just started napping again over the past couple of days and is back to eating three meals of solids plus bottles.

She tried a pancake for the first time today (we made her a tiny one) and while she did shy away from it at first, she let me put it on her tongue and she did actually eat some of it, once it was soggy enough for her to just swallow the little bits. That is a pretty big thing for her, so we were really happy about it. She definitely didn’t like holding on to it though, so as part of our therapy goals for the next six months, I think we will be getting a sensory profile done for her, which means she’ll be assessed to see what she can handle and what she can’t handle and we’ll be given some direction on how to help her overcome her aversion to certain textures.

Developmentally, Vivian is still trucking along at her own pace. We got her a bigger, heavier Oball and she has really taken to it. She’ll pick it up from wherever it is around her body, even crossing over her mid-line to pick it up from one side or the other with her opposite hand, which is good to see.

New OBall

She’s done a few sneaky rolls onto her back to her tummy, when we haven’t been in the room to see of course! We are still working on getting her to bear more weight on her arms and knees. She will need to have an xray soon to check that her hip sockets are developing OK, as this can be an issue when kids don’t bear weight through their knees and legs when they typically would.

Her glasses aren’t staying on much these days, because she’s discovered it’s very easy to pull them down past her nose! We will be scheduling an appointment with her ophthalmologist again soon to see what he wants to do regarding her strabismus. I’m nervous about that because I think he’ll suggest surgery.

Vivian High Chair

Our ACC therapists organised for Vivian to be measured for a special chair that will support her more than the high chair we have at the moment, as well as a stander to get Vivian upright and bearing some weight through her legs. I had really hoped that she would be sitting upright unassisted by now, but I’ve learned that things will come when they come and I should just concentrate on enjoying the journey where I can, because she is growing so fast.

And Vivian is still seizure-free! We are two months in on her wean off of the levetiracetam. Next week we go down to 1ml a day. Please keep your fingers crossed that she has no spasms or seizures.

Hope that this month brings you much joy and happiness! :)

Weight Woes & Ear Checks

It’s been a month since I last posted updates – oops!

Good news first: Vivian is still seizure free and we are a month into weaning Vivian off of her anticonvulsant medication (a quiet woo hoo!).

Bad news: It’s been this long between posts because we had a setback with Vivian’s weight and it has been hard for me to come to grips with it, and because Vivian’s birthday kept us really busy (will update about that soon, I promise).

The day after my last post, we had Vivian’s next pediatrician appointment at the hospital, where she was weighed for the first time in three months.

We were pretty shocked when the scales read 7.65kg, meaning Vivian had only gained about 320g in three months. It was super disheartening when the pediatrician pointed out that this put her at the first percentile on the hospital growth chart (based on forumla-fed infants). She did grow 8cm over those three months, though, so her growth hasn’t been stunted at all.

Ben and I left that appointment full of gusto about getting Vivian onto three meals of solids a day, and me vowing to research everything I could about getting more calories into these limited (smoothest of smooth) solids.

The pediatrician also put in a referral to get a dietitian working with us. I will admit that it was really hard going home and realizing that yet another thing with Vivian is not going to be easy. Really hard. But she’s still smiling, and laughing, and being as active as ever, so she’s definitely not failing to thrive. On the bad days, she makes us really work for those smiles and laughs, but it’s still worth it.

I was also pretty confused because the New Zealand Well Child books use a different growth chart than New Zealand hospitals use. The well child chart is based on breast-fed infants and is the one used by the World Health Organization. On that chart, Vivian’s weight put her at the tenth percentile, not the first.

Vivian was weighed again last Monday and now weighs 8kg (I think this puts her at the 25th percentile on the WHO chart) after a lot of hard work by Ben and Vivian. Ben has been working on upping the volume of solids at every meal, along with adding things like cream and butter to Vivian’s solids, which she doesn’t seem to mind. We’ve also discovered Vivian takes after me and shares my love of peanut butter. Her only accepted savory flavor to date. We’ve got a long road a head of us on food! Hopefully we will get there one day.

The dietitian finally made contact and saw us last week and didn’t really tell us anything we hadn’t read already while researching a higher calorie diet for Vivian. She did, however, point out that breast milk wasn’t providing Vivian with an adequate amount of iron past the first 6 months. When I mentioned that this information was somewhat outdated, and that the iron in breast milk is more readily absorbed than iron found in other foods, she didn’t look particularly pleased with me and so I spent the rest of the meeting on edge, and was pretty disappointed with the information she provided.

At the moment we are still continuing with donor milk, as we haven’t run out yet. She did mention a supplement we could add to Vivian’s breast milk that will boost the fat and calorie content and dropped off a sample for us, which is a good avenue to look at, but a large amount of powder will need to be added to the bottles and we’re not sure Vivian would readily accept the flavor. Something for us to trial, I guess.

Slight rant: Today we were back at the hospital for an ENT appointment that was completely superfluous and a waste of time. We were there for all of 90 seconds once we were called back from the waiting room. They only wanted to check Vivian’s ears to make sure there was no fluid build up or sign of infection, even though we already see the hearing specialists at least once a month (usually twice a month)!

While I do appreciate that they have Vivian’s best interests at heart and that they’re being vigilant with her hearing health, we could have told them her ears are clear because they were just looked at 10 days ago.

I leave you with what Vivian thought of the waiting room:

What Vivian thinks of having to wait for her appointment #hopeforvivian

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And will try to update with how Vivian is getting on in physiotherapy and her birthday soon!

Two teeth and three weeks later!

I have the best intentions to post every week, or at least every two weeks, but last week snuck by really fast. Sorry for the hodge-podge of updates! Both Vivian and Ben had a cold, and much grumpiness ensued.

Vivian has still had no visible spasms or seizures. With just over a week to go until her birthday, I’m actually terrified at the thought of beginning the wean off of her anticonvulsant medication. I am so afraid that she will start having seizures again, and then on top of that, if we start her medication again, what happens if it doesn’t work this time? What happens if her epilepsy triggers the infantile spasms to come back?  I feel like we’re damned either way.

Either we continue to give her this heavy-duty medication while her brain is trying to develop, or we run the risk of seizures. And then if we don’t give her the meds and she has more seizures they will disrupt her development as well. I know only time will tell how long she will be able to go medicine-free and seizure-free. I hope it is a long time. I try not to dwell on the what ifs much.

Still teething: Vivian’s first tooth came through shortly after my last blog post. It’s a top right tooth, but not one of her two front teeth. The left one is still working its way down. Vivian still has quite a strong tongue thrust reflex so you really can’t see her gums ever. She also has a pretty big upper lip tie, so it’s really hard to get a good look at her upper gums without her getting very upset, so we mostly go by feel! Her top tooth is getting big enough to see it from an angle or two without having to move her lip up, so that’s pretty nifty!

Today we noticed she also now has a bottom front tooth that’s cut through as well; it was a very sneaky tooth indeed!  I thought I had felt something sharp a few days ago but didn’t see anything, and then today got a glimpse of white while she was eating and there it was. I have a feeling she’ll be getting a few more teeth in quickly now that the first few have arrived. Here’s to hoping we manage to get some sleep over the next few weeks!

Weight: We have a pediatrician appointment at the hospital tomorrow afternoon. The first in three months. I have no idea what Vivian will weigh, but I hope it’s enough to keep the doctor happy. We stopped recording her precise milk intake the week before last and it feels really weird not to record the volumes in my phone every time she eats. I worry that she’s not getting enough, but she seems to take enough every day, along with at least one meal of solids.

Everyone keeps commenting on how long she is. She’s been average for height at every appointment we’ve had. I think it’s because she doesn’t have much extra chubbiness to her?

Vivian Rufflebutt

Eating: Vivian is still doing well with very smooth purees like yogurt and custard, and our speech language therapist is still really happy with her progress. We also introduced another flavor – pear, carrot, blueberry and quinoa. We call that one “quinoa”, because if you call it carrot, she won’t open her mouth.

The SLT said it’s amazing that Vivian trusts us so much with her food, and that a lot of babies she sees will just shut down after you make them try a flavor they don’t like.  Whenever we feed her, we make sure to tell her what she’s eating; she definitely recognizes “yogurt” and “chocolate”, and we make sure to give her yogurt again after she tries something new, so she knows that we won’t force her to eat something that makes her gag.

Vivian Eating

Communication: The SLT has also recommended we encourage Vivian to use her voice more, so we play games where we’ll sing or do an activity and then stop and wait for her to tell us that she wants more by making a sound. We also play with her toys and if she touches them, we say, “Go!” and use the toy as well, so that she will know she can use her voice to play too. And we are trying to encourage her to say stop by holding up our hand and placing her hand to ours when we finish an activity.

We’re still getting some babbling “la la la” here and there, but not much more than that. It’s crazy to me to hear what neuro-typical (NT) kids her age sound like. And even more crazy to see how fast they are with fine motor skills. I think both Ben and I are in awe of how fast other babies her age are and how much bigger the gap is getting between Vivian and them.

Physiotherapy: Vivian has started reaching for things more with her right hand, which is exciting. We are still working on rolling from front to back and from back to front both ways, as well as sitting. It feels like we’ve been working on these things for ages. I guess we have. Still hoping one day we’ll get there!

Vivian’s wrist brace came last week. It’s a bit long for her arm, so we are only putting it on for a few minutes at a time to get her used to it for now.

We tried Vivian again in her high chair today, but this time we shortened the legs so that she’s only about a foot off of the floor, instead of up at the highest setting. She took it really well and played with a spinning toy that has a suction cup on it, to fasten to the high chair tray. She really likes this toy and will often reach for it with her right hand to spin it, which is awesome.

Vivian Spinning Toy

ACC: We were meant to have a meeting with our ACC case worker on Friday but it got pushed back to this coming Friday. She suggested that we consider some inpatient, intensive therapy in Auckland at the Wilson Centre. I don’t even know how that would work logistically at this point in time, with Vivian not sleeping through the night in her cot yet. Perhaps once we’ve mastered this transition. I never thought they would suggest it for us but maybe it will be good for Vivian. It also frightens me to think about going to another 24-hour care situation, with nurses and doctors. I didn’t realize it scared me until just now. Those memories of being in NICU and wondering when we would get to leave stick with you sometimes.

We also were informed that Vivian is entitled to attendant care hours each week, for the care that she requires which is above and beyond what she would need if she didn’t suffer her brain injury. This means we can get someone in from a healthcare provider to watch Vivian if we need to, who will be equipped to deal with a high needs child, and also that Ben can work as her family carer through the healthcare provider, and be paid to take care of Vivian for these hours and no longer has to work nights on the weekends.

This also means on the weekends we can all finally spend some time together instead of Ben or I having to catch up on sleep in shifts. It feels like a huge weight has been lifted for Ben, but also for me as well. It really didn’t seem worth the money for us to be so stressed over him getting enough sleep for work, or the risk he took working security every week.

Vision: We are now waiting on a report from BLENNZ to find out whether they think Vivian has some degree of CVI. If she does (and I’m pretty sure she does), I think she’ll be invited for a proper assessment and therapy in Auckland at some point for this as well. That’s probably a long ways off, though.

We are also waiting for a follow up appointment with the ophthalmologist in Christchurch Eye Clinic to find out whether Vivian will need surgery to correct her strabismus (Vivian’s eyes not lining up all the time). Another thing I’m trying not to think about! :)

In the mean time, we have been looking at finding toys for Vivian that offer a lot of visual stimulation – reflective toys and toys that light up. We also think that she is attracted to yellow and red toys more than other toys (common for babies with CVI), which would explain why Mr. Snail is her favorite toy and she’s taken a liking to a yellow plush toy by giving it kisses and drooling all over it (she doesn’t do this with any other toys).

Mr. Snail

Hearing: Vivian has some sparkly new hearing aid molds, and her ears continue to be nice and clear every time we go to her hearing appointments. She is getting harder and harder to distract during these appointments though. They suggested we bring in her favorite toys, since she really doesn’t take to new toys like NT kids would, probably due to her vision impairment. She likes familiar things.

We aren’t due back for another month, so Mr. Snail will come with us to the next appointment. Writing about this now has made me think that her reaction-based hearing test has fallen through the cracks, as we haven’t had to do the puppet thing again since the first time. Will call them and query this tomorrow, as I know the specialist wanted her back at least once a month to do the puppet thing, so Vivian would remember it instead of waiting two or three months before doing it again and her having to relearn.

Phew! I think that’s everything! Hopefully my next post will have some good birthday pictures. We decided to invite some folks over to celebrate and we’re not sure how it will go with our house being so small. We wanted to make sure we could calm Vivian down if she gets worked up, so home was the best place to be able to do that.

Hugs from us to you! Please leave us some comments and tell us what’s happening in your world.

171 Days

171 days.

That is how long it’s been since Vivian has had a cluster of spasms.

We had a neurologist appointment this week and he said we are seizure free. That the startles I’m seeing in the morning are probably just that, startles.

We got to ask all sorts of questions that we never thought to ask while Vivian was in NICU. Questions about her epilepsy before infantile spasms. About her vision.

It was a very uplifting appointment. For the first time in a long time, I can say we are seeing some light at the end of a tunnel, at least for now.

He suggested we look at weaning Vivian off of her current anti-seizure medication when she turns 1-year-old, as long as she’s still seizure free. The wean would take three months. His reasoning behind this is that her brain is developing so much right now, when she is young, so we should give her as much of a chance to be medication free as we can. Even if it means being off of the medication for only a year or two before she has more seizures, at least she will have that time to develop normally, without taking such a heavy medication.

Ben and I really didn’t expect that suggestion at all, because her pediatrician has said several times, “She’ll always be on a maintenance medication for her epilepsy”. I hope that he is right and that we can do the wean. I hope that the seizures don’t come back, ever. Or if they do, that they won’t come back for a long time, and that they are easily managed, without a drug that will make her space out and not be herself.

Every drug has its side effects and risks. There is no magic cure for epilepsy, unless you’re a candidate for brain surgery, and Vivian is not such a case.

We are so excited, and so hopeful.

Vivian Oball Smile

Vivian’s had a very good week this week. She has been sleeping in the cot again for most of her day naps, and has been going down for bed pretty predictably between 7-8:30pm every night. She hasn’t been sleeping through but except for one night where she had a very big sad, has been really easy to get back to sleep.

She is really starting to get used to her glasses, which is down to Ben’s perseverance. He does so much with her every day. He is amazing. I am so lucky that he is her Dad. I do wish I could be a stay at home mom, but Ben being home with her is the very best next to that.

We’re still on a solid food adventure at the moment. Yogurt is definitely a winner. Today, she tried some carrot & kumera (homemade) and that was another winner. She didn’t like it as much as the yogurt (I don’t blame her, the yogurt is pretty darn tasty), but she definitely didn’t hate it, so we will take that and run! We are so excited about this, too.

She doesn’t really get excited to see food coming (I don’t think she really notices either), but as soon as she touches it, she puts her hands to her mouth, and has let us spoon it in for her a few times. It’s amazing to see her starting to eat and take an interest in food, even if most of it ends up down her front. Ben and I really can’t get over it. She just keeps surprising us!

Tracy Runs For Vivian

9 Months Old

Vivian was 9 months old yesterday.

Pretty soon our wee Vivian will be outside of me for as long as she was inside of me and I can’t get my head wrapped around that. I can still remember what it was like to be pregnant and so happy. I am happy most days now but about different things than I anticipated being happy about. Different achievements than those I thought I would be celebrating at this time.

It seems like so much has happened in the 2 weeks between blog posts, I don’t know where to begin! Apologies in advance for the novel!

When I last posted we were gearing up to go to her next pediatrician appointment. So those updates first: Vivian is now over 7kg at 7.33kg, which puts her at the 20th percentile for weight. For you Americans, that’s just over 16lbs. And she had gained another inch and a bit (around 3cm), which would be why everyone we see keeps telling us how ‘long’ she’s getting!

Vivian Sleepy Feet

The pediatrician wasn’t concerned about her weight, so we are to keep on with the breast milk for now and don’t have to worry about fortifying it. We have been very lucky to not have run out of donor milk. The right amounts keep coming in; small donations here and there have been keeping us going. Thank you to our wonderful, wonderful donors. You women are so amazing.

And the doctor doesn’t want to see us again for 3 months! That’s the biggest gap yet between appointments. Hurray! I told her to please not take any offense, but I was so overjoyed at that news.

The only thing of concern that she mentioned is Vivian’s head has still had minimal growth. I think she’s in the first percentile for head circumference now.

The pediatrician asked how Vivian’s ophthalmologist appointment went, which we thought went well. I’m concerned now that the tests that the doctor did didn’t really investigate whether Vivian has CVI.. The more I read about it, and the signs that kids who have it show, the more concerned I am that Vivian does have it. I have requested a follow-up sooner than 6 months away with the ophthalmologist because of this.

We picked up Vivian’s glasses last week and she absolutely hates them. With a passion. Every time we put them on she freaks out, because they’re on a band that goes around her head. First she freaks out because you’re touching the back of her head with the band, then she freaks out as soon as you slide them down on her face. Then she freaks out when she realizes things look different. There was a lot of freaking out and eyes squeezed shut over the past week. She would only tolerate them on for maybe 5 minutes at a time. At one point the little lenses were fogging up because her face was too warm and they’re so close to her eyes.

But today, she watched a Baby Einstein video (yes, we know screen time should be limited for babies. We used to just play it for her while she was in her bouncer because she liked the songs on it) and she watched pretty much the whole thing with her glasses on. And she didn’t mind when I readjusted them a few times, which was shocking. She also picked up a toy when her hand hit it and actually looked at it,ever so briefly, which is amazing.

Vivian Glasses Pondering

And Dad even got smiles out of her with them on.

Vivian Glasses Dad

Since I last posted, Vivian has also gotten her new hearing aid molds! They are ‘candy apple green’ and are so much bigger than her last pair; you can really see how much her ear canals grew during the holidays. They’ve also been turned up to 100% now, so Vivian has as close to normal hearing as we can get with them in.

Vivian Almost 9 Months

While we’re on the topic of hearing, one of Vivian’s favorite things to listen to at the moment is the Laura Veirs “Tumble Bee” album that an anonymous gifter sent us, along with an awesome Busy Bee bib with soft purple backing that Vivian loves. Ben and I really enjoy listening to this album as well and are often singing the songs to Vivian. She always smiles as soon as we start singing a familiar song, which is such a wonderful thing to see. Whoever you are, thank you very much! Vivian loves both items and so do we :)

On the therapy side of things: we were loaned the Lackey Squiggle Early Activity System to try out for a week to see if we wanted one ordered for Vivian. It is pretty awesome and we believe it will be really helpful for Vivian to learn how to bear weight on her hands, elbows, and knees; how to use her hands more; and how to sit up.

Vivian Squiggle Early Activity System

We were also given a ‘corner chair’ which we can strap Vivian into (loosely) which will help her learn how to sit up too. It’s a high-backed wooden chair with slight sides, and no legs. A table that goes with it was dropped off today and Vivian really took to banging on it with her hands and picking up toys to bang on the table, now that her toys are within easy reach.

We are still working on rolling front to back, and back to front to the left, since Vivian is stronger in her left side and doesn’t like to bear as much weight on the right arm. She has also started bearing weight on her feet if you stand her up, which is exciting. She loves to play a jumping game where we slowly make her jump up and down while singing, “Vivian is jumping, jumping, jumping! Vivian is jumping, just like that!” and she gets really excited. I’ll have to try to get it on video so you can hear her squealing with laughter.

I would say she might actually get to use a jolly jumper soon, if she keeps showing improvement there. I never thought she would ever be able to have fun in one of those.

As far as seizures go, we haven’t seen any spasms, and Vivian has only had a few suspicious movements that do seem like an exaggerated moro reflex startle. If I move very slowly during her first nappy change, they don’t happen at all, so they may not be related to infantile spasms at all. If this is the case, it’s been almost 6 months since her last cluster, which is fantastic!

It’s hard to believe in three months she’ll be a year old. It does go so fast.

Keep Reaching!

Another week (and a bit) done and dusted!

Last week, Vivian’s reflux was acting up a bit, which means we’ve been revisiting intake land, and have had to up her Gaviscon doses accordingly. She’s been struggling a bit to pass everything with needing this much Gaviscon, so when we go to see the pediatrician at hospital again, we will be asking about alternatives to Lactulose, which apparently is very dehydrating.

Monday we went to the Champion Centre and Vivian only stayed for a half session. She woke up at an awkward time, and was due back to bed when we needed to be there, so she got pretty tired about half way through and had had enough!

Throughout the week Ben has been working with Vivian on her rolling and sitting. So far she rolls to her right much easier than her left, while on her tummy. She doesn’t like putting weight on her right arm to push over to the left, so that’s what we’re to focus on now. That and weight-bearing through her elbows, and getting her wrists to turn in towards her face (think of a baby doing little bicep curls).

Her ACC physical therapist was really pleasantly surprised about how well she is picking things up, like touching her toes. While she doesn’t do it unassisted on the floor yet, she does try at least and got her toes a few times while we have been relaxing on the bed. After Vivian warmed up with the PT, she attempted a few quick toe grabs while we were talking above her, which is great.

Vivian Toe Touch

 

Vivian’s little personality is starting to really show during these therapy sessions. The therapist can try to get Vivian to look turn to one side and Vivian will instead keep her head straight and turn her eyes. Cheeky! She is a sucker for a really sensitive snail toy that a lovely Mum sent us from up north; she found the toy too noisy, but it’s awesome for Vivian because it provides instant feedback when Vivian makes a move. Eventually the snail gets the better of her and she will turn for it.

After her PT session, Vivian had a quick play and then we zoomed off to get her fitted for her very first pair of glasses. Unfortunately they only come in two colors (guess which ones) but they should be pretty darn cute. Vivian’s really not going to love them touching her face unfortunately, so we will need to work with her to desensitize her to having them on. If all goes well we might be able to pick them up this Friday after Vivian’s hearing aid appointment.

This is Vivian’s latest sound discovery:

What I was actually trying to record #babyyodeling #hopeforvivian

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This week we have Vivian’s pediatrician appointment coming up so keep your fingers crossed that she’s put on a decent amount of weight, please :)

Hope you have a wonderful week!

Intake and Outtakes

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 :)

Vivian Singing

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.

Vivian Babushka

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.

Merry Christmas Outtake

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.

Holiday Fun

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.

Bahumbug

“Stop talking about my poo, Mom!”

100 Days

Today marks 100 days since Vivian last had a cluster of spasms. This is pretty awesome, and we’re quietly happy that she’s not having those types of seizures any more.

We have come so very far in all sorts of ways. She was 7 months old yesterday as well. 7 months of the crazy roller coaster called life for our little Vivian.

I am wary of saying that she’s now 100 days seizure free, because some mornings she will still have a few suspicious movements while she is lying on her back on the changing table.

I’ve mentioned them a couple of times; they look like very strong startles, where her arms snap back on her changing mat and her feed slam down, sometimes hard enough to make a noise. Her head turns to the side and her eyes go up in her head. It doesn’t last longer than a second, so if you blink or if you’re away getting her next outfit, you’ll miss it. But if you watch long enough you’ll usually see another one. Of course, I have tried recording these on my phone, but they have a way of stopping as soon as I press record.

If you didn’t know what you were looking for, they really would look like just a strong startle, but she’s too old to be having such a strong moro reflex (although kids with cerebral palsy do often have a tendency to keep their moro reflex for a very long time, and I suspect Vivian may go on to be diagnosed with some form of CP down the track), and there isn’t anything to trigger them from what I can tell, like there would be with the moro reflex.

We saw Vivian’s neonatal consultant (pediatrician) this week and when we mentioned these to her she said that Vivian will always be prone to seizures, and if at any point they become more pronounced/frequent/uncomfortable for Vivian, then we should definitely bring her in to the Child Acute Assessment Unit.

At what point do we make that call though? Are these suspicious movements impacting on her development? Are they classed as infantile spasms still? So many questions that we don’t seem to get answers for that we need a neurologist to answer. It feels like another way of saying “if the seizures aren’t making Vivian uncomfortable, we’re not going to treat her for them,” like they said when Vivian first starting having the IS.

Our ACC case worker wants the pediatrician to refer us on to our neurologist so she can meet with him and get more information about Vivian’s case. I am going to try to push for answers to these questions from him when we next see him.

In other news, this week was pretty exciting for Vivian, in terms of new things and new experiences.

We picked up a third-hand Steelcraft reversible stroller/pram from a local buy/sell Facebook page. It was only $50, and in great condition, so that is pretty nifty. It can have the seat facing you, or away, which is the main feature we wanted in a pram, because we feel Vivian being able to see us while we go for walks and hear us because she is facing us will be better for her development. We’re still using a capsule & snap-n-go system at the moment, so this is more for when Vivian gets too big for that. Ben took her out for a walk the day before yesterday and she didn’t really utter a peep while they were out. The last time we tried this, she screamed the whole way around the block.

We also got her a new pair of sunglasses that are a bit shorter on her face, so they don’t dig into her cheeks as much. She played in the lounge with the curtains wide open on a very sunny day and didn’t freak out. It was glorious. You have no idea how amazing it was. She spent most of the time playing with the sunglasses, lol.

On a side note, I need to adjust the straps on both pairs though, because Vivian’s head has not really grown at all and they’re a bit too loose on the smallest size, so they fall down. She definitely has microcephaly, which means her brain & skull aren’t growing like they should, as a result of her birth injury.

We bought her a new play gym for Christmas that has a higher contrast between colors than her first one, and a better system for hanging toys on that will allow us to swap out the toys easily. She absolutely adores it and will happily bash all the toys on it to oblivion. She also likes to feel the fabric when she’s on her tummy and spends a good ten minutes scratching it with her nails. It even has a cause & effect toy on it that she’s cottoned on to- a rattle that has an LED light in it that flashes when you shake it hard enough. She likes to kick the arm of the play gym it hangs from.

We also got some really awesome dribble bibs from a crafty momma, made of really snazzy fabric and are nice and thick to soak up all the drool. And a new bouncer from another momma in my due date Facebook group, after ours was *coughBencough* donated mistakenly. I can’t wait to put her in the bibs; made of really snazzy fabric and are nice and thick to soak up all the drool. Vivian used to hate the old bouncer but now that she is more active, she really loves it and was going crazy in it last night. I’ll have to try to get her on video because it’s so adorable. She does this crazy kick to get bouncing really hard.

We also purchased a Baby Shusher from a local baby business, Sleepytot New Zealand. Holy crap this thing is AMAZING. I might have to give it a write up in a separate post, because it’s that awesome. It was really the key to having a very successful outing, which was the biggest win of this week.

Vivian and I had an afternoon play date/meet up with a bunch of mums from my due date group. It’s only the second time I’ve been able to meet up with my due date group, and it was the first time I met a lot of the ladies in person. It was very cool getting to put faces with names and seeing all the babies that I’ve grown to know through pictures and stories.

Vivian only had a few minor hiccups while we were there. She spent most of the time very quietly listening to all the talk (there were about ten mums and their babies present, so it was pretty loud). We spent a lot of time outside beneath a shady apricot tree, and as long as the sun wasn’t directly in her eyes, she was great! I got her to take half a bottle and managed to get her off to sleep for about 20 minutes. We were gone for about 3 hours, which meant Ben could take a nice nap before working last night. It has done heaps in terms of building confidence to take her out by myself without Ben in the car and shows how far she’s coming along with feeding and not freaking out as badly in new situations. Hurray!

Summer Smiles

I also spied her grab a toe for the first time last night. Even if it was for just a fleeting second, I’m sure she’s going to do it again!

What’s new in your world?

6 Months Old

Our munchkin is now 6.5 months old, and we are just over 11 weeks seizure free. Crazy to think about how much time has passed since she arrived.

On one hand, it feels like it’s gone so quickly, and on the other, it’s been excruciatingly slow in some regards.

I still find it hard to think about what the future holds for Vivian and how different this future will be than the one we imagined. Even now some days I am overcome with sadness and I know Ben is as well, although he may not say it as often as I do.  We push it down and try to stay positive. Other babies we know are hitting milestone after milestone and we are still waiting for our first full roll. It’s so hard for us to not compare. It’s impossible for us not to compare.

At the same time, it is amazing to see the progress she is making at her own pace.

We still have very strong kicks happening now. Not just single leg kicks. Double leg kicks, like jumping jacks, and a very excited, smiling Vivian whenever she realizes you’re there with her. She’ll slowly maneuver herself to kick nearby objects, which is neat; her favorite thing to kick is one of the arms on her play gym. When she lands a good one, it causes all the toys on the play gym to shake and rattle, which she enjoys.

We are still working on improving her grasp. She doesn’t seem to reach for toys in the same way she was in October, when I posted the video of her tracking and reaching for the mobile. She now seems to reach for things in a nonchalant sort of way, not as direct or with as much purpose as she did then. I am not sure what this means. Sometimes when she snags a toy, she’ll wave it around in a way that she wouldn’t normally wave her arm around, so I’m sure she’s registering that she is holding something, but she definitely doesn’t investigate or explore toys visually for any length of time. I don’t know if this has something to do with her vision, or whether it’s something neurological, or a mixture.


Vivian_Play

We are still working on tummy time and making this an enjoyable thing. It is a bit of a struggle, but our team at the Champion Centre gave us a large foam wedge to use at home, which puts her on a slight incline. This seems to make it a bit easier for her to overcome gravity and she doesn’t complain much when she’s on that.

Tummy_Time_Smiles

We do guided rolls from front to back and back to front. I really think she may start rolling front to back before she rolls back to front. She rolls from side to side quite easily on her own and will pause on either side to listen and look at things. If we turn the radio on in her room, while she’s in her cot, she’ll turn towards the speakers to listen.

When I pick her up, I can tell if she wants to be picked up because she’ll roll slightly to one side and allow me to roll her the rest of the way so I don’t put too much stress on her spine. When she doesn’t want to be picked up, she doesn’t partially roll. I’m supposed to try getting her to do this equally on both sides, but it’s hard.

Visually,  she’s still super-sensitive to strong lights. We keep the drapes pulled in our house because the west-side of the lounge is pretty much all windows, and when the sun starts to go down it’s blinding. We can have them partially open in the morning though, and can have the drapes open in other parts of the house in the afternoon and it doesn’t affect her too much. But if we were to walk outside with her in the capsule or in our arms, without a sun cover, she would have a melt down.

We finally have an appointment set to get her vision tested in February. I’m not sure what to expect at that appointment and what they’ll be able to discern. I guess I need to read up on this a bit beforehand.

Focus

I do think we will discover she has some sensory issues down the road. She tends to panic if things brush her head or face unexpectedly,  and still prefers movement to get to sleep and to be calmed. She is still swaddled in the hammock to sleep and, for the most part, to eat. She can eat unswaddled and in arms, but she tends to not eat as much because she becomes disorganized and frustrated, so we are working on this.

Hearing-wise, we’ve been to the audiologists twice since I last posted. Vivian was fitted for new ear molds for her hearing aids two weeks ago, and they arrived this week. It’s crazy to see how much her little ears have grown, which also makes me wonder how much her head has grown or not grown. Her hearing aids have been turned up to 90% now. She will sometimes get fussy with them in at this volume, so we’re taking it slow.

I have to hand it to the team at Triton Audiology; our hearing specialist really has a gentle hand and is very patient with Vivian, and allows a lot of time at each appointment so that we’re not rushed if Vivian gets unsettled. I am so thankful for that, since we’ll be seeing them at least twice a month until Vivian’s ears don’t grow so fast. You can tell pretty quickly which medical staff have dealt with babies a lot and which haven’t and Vivian definitely puts people to the test sometimes.

We have yet another appointment at the hospital for a hearing test in January, and an ENT appointment scheduled for April.

We see her pediatrician again in the first week of January.

The main thing that the pediatrician will be looking at is her weight and feeding, which we are still working on improving. She’s having more good days than bad with feeding, which gives me hope that we’ll see a weight gain. I think the last time I posted,we were hovering around the 500-550ml daily intake mark. Today we’ve hit 700ml, which is an all time high since Vivian has been off of the steroids. If we can hit this again tomorrow and the next day, I will be amazed.

We’ve  been asked if Vivian might be ready for solids soon. I think we are miles away from this. Vivian isn’t really showing many signs of being ready (at least not in baby-led weaning terms). And because of all the medications she has takes given orally, it wouldn’t surprise me if we have trouble with solids down the road. We’ll tackle that when we need to, I guess. Again, we don’t know what will happen, and I don’t know what to expect in this area. I’m starting to get used to saying this a lot. We don’t know.

I do know that we couldn’t be more in love with her. She really has stolen our hearts and brings us such happiness. Even if she isn’t in the 90th percentile for height or weight or head circumference, she’s definitely not the same little Vivian who arrived on a dark and stormy night with such a dramatic entrance into the world. She has overcome so much and has mellowed out a lot since coming home from the hospital.

Here’s to more progress in the next six months, and no more seizures!

8 weeks seizure-free

A month has gone by and I haven’t had time to post!  Things have been very, very busy.

Firstly, on the infantile spasms front, we’ve gone just over 8 weeks without a spasm (I think). This is great news!

happy_vivian_5_months

Vivian still has some very strong startles sometimes that make me wonder if they are spasms, but it’s really hard to tell. It only happens in the morning, and I only really see her in the morning on the weekends, so it’s difficult to really get a good sense. Ben says she doesn’t really do it that often. I don’t know. If it keeps happening I’m going to try to get some on video to show the neurologist.

Last weekend she may have had an absent seizure (not a cluster of infantile spasms), which lasted for some time and I recorded and sent to the pediatrician. Our neurologist said if it was just a one-off it probably didn’t do her any harm, but to watch and wait to see if there are any more. It was pretty freaky- her eyes would go to her left, over and over, and she seemed unresponsive during it.

We have no follow-up scheduled with her neurologist any time soon that I am aware of.

On the feeding front, things are slowly improving. We had a pediatrician appointment the week before last. Vivian hasn’t put on any weight, but she hasn’t lost any. We are still working on getting her feeding intake up. It is very slow going. They want us to get her on a feeding schedule so that she doesn’t snack all day. So for now we space out her feeds to have gaps of 2 hours without food, to get her eating a bit more at each feed. It seems to be working, and has resulted in her sleeping at night a bit better as well. If she doesn’t start gaining weight again, I think we will have to consider fortifying the breast milk she gets with something extra to pack in some extra calories.

We are battling oral thrush yet again. Her pediatrician suggested we try Nilstatin for another 3 weeks between appointments because she was off the steroids, but it didn’t work, so back to fluconazole again. We have another week left of that. Hoping it works. We won’t be seeing her pediatrician again until after Christmas, so if it doesn’t, will have to get her into our GP, I guess.

Developmentally, Vivian is still doing things at her own pace. No rolling over yet, but half rolls each day. She has started touching her knees with her hands, so we think she will find her toes eventually! We are still working on her grip as well as she keeps her hands closed much of the time.

Her therapists are still pleased with how far Vivian has progressed in the past two months. We are able to transfer her much easier than before, from capsule to floor and vice versa. We maybe get a meltdown every other day instead of multiple times per day. Verbally, she still sings to us every day and has started saying ‘m’ and ‘w’ sounds, so we get some mumbled ‘mum’s when she’s upset and a few ‘wa’s here and there. She’s also working on her squeal sound- not quite there yet but getting there.

I got my first real rolling giggle last night. It was pretty amazing! She has turned out to be very ticklish when she’s in a good mood and doing little tickles up her sides makes her giggle for ages. Ben, however, has been getting these real giggles for about a month now. He’s just funnier than I am :)

On the hearing front, we now have Vivian’s hearing aids. She only wears them for about 10 minutes at a time when she is awake and in a reasonably good mood. We have been so busy since we picked them up that she hasn’t had them in every day like she should have though. We are working on that. She gets pretty quiet when she has them in and likes to listen to music and our voices from across the room.

The part that sits inside her ears is purple, with glitter (pretty styley!); this part will need to get remade every month or so as her ears grow. The outer part is a pinky-purple color and won’t change color. We get two or three sets of these through the public health system for the next five years,  I believe. We were advised to get these itemized on our contents insurance policy, in case we need extra sets. Apparently once babies discover their ears, they get tossed and lost quite a bit.

Vivian's hearing aids

We are also now scheduled to get her vision checked, as her pediatrician voiced some concerns at our last appointment. We’re unsure as to what her vision is actually like. She does focus on faces and eyes sometimes, but other times does not. Whether this is due to the distance you are away from her, or something else, I guess we will find out.

On the overall home front, we finally moved house. The house I mentioned in my last update fell through the day after I posted, so the next week was spent frantically looking at more houses and trying to secure a rental. It was probably one of the most stressful weeks we have had since Vivian was born.

A place right around the corner from us popped up and we signed the lease the following week, so we were sure it wouldn’t fall through. Then we had a huge garden clean up at our old house, which was amazing. Some of my wonderful workmates and a few of our awesome friends came over and helped with this. Our yard went from a jungle to a respectable-looking garden in about 5 hours over two days. Many thank yous to everyone who was able to come! <3

We moved the next weekend after that and again some awesome friends came through for us and managed to lend a huge work truck, which made things go very quickly. It was a bit stressful for me because I was watching Vivian on moving day and couldn’t really pitch in like I normally would (yes, I am a bit of a control freak when it comes to moving house). I didn’t really get to help unload anything at the new house, which meant it was hard to unpack things quickly because I didn’t know where anything was…nothing being labeled when packed may have had something to do with this too (coughbencough). We are still unpacking this week but we don’t have much left to do, thank goodness. It could be A LOT worse, so I am not complaining!

The new house is a bit on the old side, but it will do for the next few years for us. It is $10 a week cheaper than our previous house, which is an added bonus! Everything else we were accepted for was a the top end (or over) our budget and that really wasn’t an awesome feeling.

I feel like there is so much more I could write about in this post, but it’s already incredibly long now as it is. I will save things for another blog post.

Hoping that you are having a happy Thanksgiving weekend over in the US and a lovely weekend everywhere else in the world. Will try to not go as long between posts so they aren’t novels in the future!

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