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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4 Months!

We’ve reached the point where I think most parents start counting their child’s age by months instead of weeks. It’s very hard to believe that we have come this far, after Ben was told Vivian wouldn’t make it on the night she was born.

On the infantile spasms front: No further seizures since the Thursday before last, thankfully! Our neurologist said to extend the prednisolone wean by an additional week, so Vivian has 6 more days of 1ml doses left.

On the overall baby front: We are still taking every day as it comes, and believe me, some feel like they go on forever! Most are going by entirely too fast for my liking. I am starting to feel as though there will never be enough time to do anything other than work, express milk, laundry, and long for sleep, in between soothing crying baby. We are still getting our fair bit of smiles and cuddles each day, which is what is keeping us sane! And Vivian is still progressing developmentally, which we are super thankful for.

Sleep. We all need more. Vivian actually was OK with the whole sleeping thing before we started the prednisolone. Now it’s very hard to get a 1-2 hour stretch at night. This is tied in with her crappy feeding still. We are lucky to get even 500ml into her each day now. She is averaging about 450ml a day this week. She’s lost 100g in the past week and I expect she will lose a bit more before she evens out again. She wasn’t a great eater before we started the steroids, so it feels like we are back where we started in terms of her feeding.

On top of the bad feeding and sleeping, Vivian has been horribly  constipated from the gaviscon she needs for her reflux. Her lessened intake means that where before she might have somewhat firmer bowel movements than your average breastfed baby, she has had really rock-hard ones that are super painful for her to pass.  She is now on lactulose daily to try to combat this.

I spoke with our old neonatal outreach nurse who is going to follow everything up with our pediatrician. Well actually, I tried to call and speak with our pediatrician last week, but she was on holiday until this week and then away until Wednesday doing work on the west coast. So I tried to ask the registrar on call, but was told I should go to our GP to get referred back to the pediatrician, unless it was an emergency…nice. And a complete waste of time. Hence why I spoke with our neonatal outreach nurse instead of the GP. I do like our GP, but I knew he would just refer us back to her pediatrician. We go in circles. I am tired of wasting time.

On the hearing front: we went to a hearing specialist today to get Vivian fitted for her first hearing aids.  It was as fun as we expected it to be. Babies don’t like things being put in their ears and they certainly won’t keep still while you’re doing it! We got there in the end, though. Because Vivian has moderate hearing loss, she will probably end up with the next size up front he smallest model hearing aid, because it is a bit more powerful than the smallest model and she most likely needs ones that strong. And, because her ear canals will (hopefully) grow pretty fast, we will most likely have to get her ear molds remade every month…crazy times. Not sure how fast her ear canals will actually grow- it doesn’t look like her head has grown much in the past two months. We will find out at her pediatrician appointment at the end of this month.

While we were at the appointment today we found out the hospital ENT department didn’t refer us on to a support service for children with hearing loss, provided by the Ministry of Education (like they were supposed to). I’m so glad that the Triton Hearing specialist noticed and put in for that referral for us, otherwise we never would have known about it. Do you see why  it’s so difficult for me to mention the hospital without complaining about something that should have happened? Again, I try to be patient. I am not a patient patient, though. And I’m definitely not a patient mother of a patient any longer. I am concentrating on the fact that at least we picked up on this early, so we can now build in the additional support or adapt our lifestyle to what Vivian’s hearing needs may be.

When we found out we were pregnant, we never thought we would need to have monthly hearing specialist appointments for our child. So many things are so different from what we pictured. I try not to think about it all at once because it can be overwhelming still. But we are still getting there.

On the me front: Counselling is going well, I think. I don’t cry every day anymore. Just some days.

Work is going well, too. The first week back was hard, I think because the last time I was there, I had all of these dreams of what Vivian’s future held, with no inkling of what was going to happen. Last week was easier. This week feels like I was never gone. I still struggle with being away from Vivian, if I stop and think about it, so I concentrate hard on not thinking about it. This is difficult though, because Ben gets to take pictures like this while I’m gone. That is my job!

Wonder

On the home front: Ben is doing an awesome job at being a stay at home dad. I struggle with being jealous of him getting to stay home, but am so happy that we don’t have to put Vivian into daycare. He’s even managed to have dinner ready when I get home a few nights (not that I would ever expect this on a daily basis)!  He still needs more sleep, though. Much more sleep.

We are still looking for a new place to rent. We looked at a place last week through our rental agent, but the owners of that property decided to rent to someone they worked with. We have a viewing this Thursday evening at a house that was up for rent last year when we found our current house. It’s not in the greatest neighborhood, but it IS within our budget. Fingers crossed we get it and that we can stand living there for a year, and that it’s warm for us in the winter.

We did get some good news from our rental agent about when we need to be out by. Instead of the first week of November, we now have until the third week to leave, so that’s a positive we are happy to take.

Here’s to hoping this week Vivian’s appetite comes back and we get her feeding and sleeping better. Even a three-hour stretch per night would be great!

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