11 Months Old

Ack, two more weeks have gone by. Vivian is now 11 months old! We have been floating through with no major upsets. Still no spasms. Less than a month to go till her birthday, and inside I’m silently freaking out about it. It has been the longest year of my life, and the shortest. I am dreading it because it is bringing up all sorts of memories of her first month in hospital. But I also want to celebrate it.

The Christchurch Women’s Hospital finally sent us their serious incident report of the events that took place when Vivian was born, and recommendations that have been made based on that report. I’ve only read it once and it was not fun to read. I should probably reread it but I don’t have the energy.

They believe  that Vivian would have suffered from some degree of HIE (lack of oxygen) already when she was born, but that their mistakes during her birth contributed to her injury being much more severe than it would have been had they made no mistakes. I am calling bullshit on that, because who wants to accept responsibility for giving an infant severe brain damage, but we will never truly know.

On to Vivian updates:

Vivian still has two top teeth coming in, and they’re taking their sweet time making a début. I can’t figure out if they’re her incisors or not, but they’re not the front two teeth. Yay for still no sleep! But we’re all handling it pretty well considering.

Vivian First Sugar Taste

Still experimenting with solids. Savory stuff is not passing go and not collecting $200. It’s heading straight to jail, via dripping off Vivan’s tongue or being scraped off because she would rather eat sweets, like yogurt, or butterceam icing (we’re doing a photo project and wouldn’t normally feed her that, I promise). We didn’t think this introducing new flavors thing through very well, did we? Take it from us, hold back on the sweet stuff!

Vivian is eating out of the hammock now, and having all her day sleeps in the cot. Awesome progress there. Just need to build up our resolve to get her night sleeps going in the cot. I have no idea how to do this. We do not believe in the cry-it-out (CIO) methods, so I think it will take some time.

Blind & Low vision Education Network NZ came out to meet us last week. They will be returning a few more times to fully assess Vivian’s sight to see if she’ll fall under the criteria to be accepted into their program/membership/not sure what they call it.

The two ladies who came out were really lovely and saddened as much as we were about nobody mentioning their organization to us from the hospital or eye department. Apparently they have approached the hospital several times and tried to educate them on what their criteria are and have asked them to send cases their way if patients meet the criteria, so they can be assessed early. Big thank you to Stacey (Thomas’s mum from Minding Thomas) for sharing information about CVI and BLENNZ. Without her blog I never would have researched it myself.

Aviator Vivian

We have an audiology appointment this week, to get new molds fitted for Vivian’s hearing aids, and to continue familiarizing Vivian with the audio-visually determined reaction evaluation test I mentioned a few posts ago (where they play a noise and if she turns to find the sound, she sees a puppet move).

We had a visit from Vivian’s ACC-provided speech language therapist. She is stoked with Vivian’s progress on not eating in the hammock. We have her propped up on pillows on the floor to eat at the moment, and she suggested continuing to add pillow height until Vivian is sitting up more. Sometimes I sneakily feed her while she’s leaning on my legs, sitting up. She won’t let me do it every time, but some is better than none.

We’re to also continue with “turn taking” behavior – where we do things Vivian likes and then stop to see if she’ll tell us to continue, and then we’re supposed to state what we are doing, and what Vivian is doing, so she gets used to hearing the words more. And to also encourage her to differentiate her vowel sounds when she’s babbling. We haven’t really heard her do that at all. I’m not sure if that will come. I hope it does.

And we’re also supposed to read her books, which is something we haven’t really done before, because we are so busy trying to do Vivian’s physical therapy every day and getting her feeding and sleeping sorted. The SLT was very adamant that books are meant to be fun. And they will show Vivian things that she wouldn’t otherwise see in our house (but we’re not sure what she can really see at the moment, so it was hard not to point that out).

So I will be hitting up thrift stores and kids buy-sell Facebook groups for some more books. Pretty books and old books, books that can be slobbered on and books to keep. Because anything is worth a try, if it helps even a bit with her communication, or if it brings a smile to her face. Whether it’s because she likes to hear us read her stories or if she just likes touching the books and playing with the textures of the pages, I’ll do my best to give her that opportunity.

Mom Cuddles

Hugs from us to you. <3

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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!

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