3-Month Catch Up!

After my last post I sort of buried my head in the sand for a bit and let three months fly by with no updates. Oops.

Work has been very busy and I’ve become a Jamberry Nails independent consultant, which has been great fun so far and has given me some me time back. It’s been awesome having kick ass nails at a discounted price, too! Makes me feel more human on the bad days. I’ve also been going back to the gym, on days where Vivian’s gotten good sleep the night before, which hasn’t been a lot lately, but the past couple of weeks have been better.

It’s hard to remember what has happened three months ago, so this will be a bit jumbled.

Firstly, Vivian hit a year seizure free! Exciting!

Vivian One Year Seizure Free

 

Sleep (and other stuff) update: In early October we got her MMR vaccine, so she’s now caught up on all of those. That went as badly as you could expect – spotty rash about a week later. A few days after that a fever and just very grumbly overall. She had some good sleeps after that where she slept through from about 6pm to 6am and she was like a different baby the next day. So relaxed and chilled out compared to usual, and so much more focused during therapy. If only every night was like that!

Her first four molars came in around this time, so sleep again went out the window. Currently, only her bottom two molars are all the way through. The top two are taking their sweet time! Ben also was having teeth trouble of his own and was at the dentist every week for about 4-6 weeks straight. Fun times all around!

In late October, early November, Vivian started getting really constipated and having trouble with hard, formed stools that she really had to work to get out. Around this time she started sleeping even worse. Late night parties, crying, kicking, back arching. It was not fun at all. I thought it could’ve even been restless leg syndrome or spasms waking her as she genuinely was upset and not just wanting comfort and she would doze off and then jerk awake by bringing her legs up to her stomach. She was definitely in pain a lot of the time and it was really hard on all of us.

It was so obvious she was exhausted and wanted to go back to sleep but none of our normal tricks were working (singing, rocking, bouncing). It really took its toll on Ben and I, but mostly Ben and Vivian, as he tried to let me sleep because of work, bless him.

We had a check up with our hospital pediatrician in November, but saw one of the doctor’s registrars instead of our actual pediatrician, because she herself was sick. The registrar suggested we up Vivian’s Lactulose dose from 12ml a day to 20ml to help pass the stool. We were concerned about this as Vivian already struggles to get enough fluids in. We are still working on teaching her to drink water from a cup and she refuses water from a bottle. Lactulose should be taken with a full glass of water because it sucks the water from your system into your bowels to soften your stool.

Well, after this, her sleep got even worse. She would bring her knees up to her stomach and just thrash around and cry :( At this point we didn’t realize it was probably the Lactulose causing her to have stomach cramps and really bad gas. Someone suggested we ask our therapy team if they had any continence nurses who worked with them. Normally continence nurses don’t see children as young as Vivian, but when the nurse heard that Vivian was on such a high dose of Lactulose, she was quick to say that amount would cause even an adult to have some really painful side effects and suggested we try a different medication, Movicol.

So we did, and the result was pretty much immediate. Over the past two weeks we’ve had a good handful of sleep-throughs after some early waking for a bottle, which we haven’t had for almost three months. It’s been great! And Vivian’s had softer, more manageable stools. Winning all around.

Equipment update: Vivian got her new bed in the end of September; it’s fantastic. We transitioned her from the hammock over to the new bed pretty much straight away and she took to it really easily within the first night of trying. I got over my mopey feelings about it once I saw how happy she was in it.

We also got a GoTo Seat for Vivian, but haven’t really had a chance to get out of the house and use it anywhere! As soon as we got approved to get this seat, the makers released the new and improved version (that isn’t available in NZ yet, boo!), so Vivian has the older version. It’s basically a portable, high-backed seat with a five-point harness and sides that come in slightly to keep Vivian from slouching to either side.

And we are still working with Vivian to spend time in her standing frame each day. We ended up keeping the second one we tried, which is on wheels and has a removable tray that can be angled towards Vivian. It’s a better model than the first one we had (not on wheels, no tray/work space attached).

Vivian Standing Frame

And Vivian has some new kicks for the summer, a sandal version of the Piedro boots she was wearing over the winter. These are only on loan until we get the pair on order for her in the next size up; fingers crossed she doesn’t wear them down too much in the next few weeks!

Hips update: Back in October (or was it September?) Vivian was examined by the “hip lady’ – a physio who specializes in orthopaedic health (I think?), to see if her hips were developing correctly. She wrote a letter about her exam…which explained how Vivian’s hips flex and at what angles and a lot of stuff I don’t fully understand. She didn’t seem too concerned with Vivian’s range of motion, but because Vivian isn’t walking or crawling, referred her for hip x-rays.

Apparently a letter was sent out to us with a date for said x-rays but it never arrived (surprise, surprise) and thankfully the hip lady followed up on Vivian missing the x-rays with our therapy team at the Champion Centre. If you miss an appointment here, nobody calls you. You’re labelled as a ‘no show’ and it’s up to you to get referred again and rescheduled for a future appointment! Pretty awesome, considering we had no communication reach us about the appointment, right?

We mentioned this to the registrar at Vivian’s pediatrician appointment and she was able to pull some strings and get us in for x-rays that afternoon while we were at the hospital. They came back fine, from what we’ve heard (no news is good news?), so it sounds like Vivian’s hips aren’t shallow or at risk for dislocation right now. Given how many times we’ve fallen through the cracks in the system, I’ll be requesting copies of the notes to see anyway, for my peace of mind.

Weight and height: I think I mentioned previously that we were still working hard at getting Vivian to gain some good weight – we’re still working on this, but the dietitian is happy with our progress.

Longlegged Vivian

I can’t remember how much she weighed at the doctor appointment, but I think it was just under 9kg (so she’s finally doubled her birth weight!), and she is 80cm tall. Half my freaking height, and not even 2 years old. Ridiculous. Thanks, Ben’s genes! So she’s in 18-month sized clothes right now, which are loose on her but tall enough for her. A string bean, she is.

Eyes update: At our last ophthalmologist appointment, the doctor downgraded her lenses to a weaker prescription. We got transitional lenses because Vivian’s eyes are still pretty sensitive to sunlight. I really hate them because they’re dark even indoors and we usually put her in sunglasses outside anyway. He also said she most likely wouldn’t need surgery to correct her strabismus but it’s not always very apparent, and I’m wondering if it wasn’t really on the day he saw her. When she’s tired, very excited, or focusing on something very close to her face, there is still a strong inwards turn to one or both of her eyes. Another thing for me to follow-up.

Vivian Reading BLENNZ Book 2

BLENNZ sent some really awesome, handmade books made especially for Vivian from the Jellybean Club (I’m guessing it’s a group of lovely individuals who volunteered their time to make the books for kids with vision impairments).

They have lots of textures and just one main image/item on each page, which makes it easier for Vivian to see in comparison to regular books. She adores them and will spend up to an hour exploring them with her hands, but mainly her tongue.

Vivian Reading BLENNZ Book

Eating update: Vivian is still going strong on eating soft solids and we’ve mastered the art of eating soft lumps in her food as well, as long as the food itself is pretty wet. She still doesn’t like to really touch her food or bring it to her mouth on her own, but is pretty accepting of almost anything on a spoon.

Vivian Eating Al Fresco

On Christmas she tried her first taste of turkey, and scalloped potatoes (with ketchup, of course). She definitely loves ketchup! Turkey she could take or leave. With foods like that, we have to actually give her a very tiny piece and shove it past her tongue, into the side of her mouth, or she’ll just spit it out when she thrusts her tongue.

She’s started liking oatmeal for breakfast, with finely chopped dried cranberries (it’s what I could find in the pantry). No cinnamon though! It’s the only thing we can peg down that she dislikes in store-bought baby food.

Therapy updates: Vivian is rolling both ways like a champ now. Shortly after my last post she really started going for it! Sometimes she still gets her arms stuck behind her when rolling from front to back and I fear she’ll dislocate her shoulder because she just keeps trying to roll over on them. I think we need to work on this while I’m home this week. Here’s a video from the week after she decided she wanted to roll both ways:

We’re still working on sitting up unassisted, but Vivian is making some good strides there. Last week, she sat unassisted for about 15 seconds, which is her current record. We’re also working on getting her to open her right hand and bear weight on her right arm while sitting, and working on developing her protective reflexes that would mean she could stop herself from falling over while sitting. It’s been slow going in this department but she is bearing weight more and more on her left side. We hope her right will follow.

Vivian Sitting at Champion Centre

Now that she’s rolling both ways, she’s spending a lot more time on her tummy than before, and is starting to bear weight through her left arm and push her torso up. She has been opening up her right hand a lot more than before when on her tummy and reaching with her right, which is great. We also want her to bear weight on her right arm here, too. She’s also been bringing her knees up every once in a while, but never while she’s bearing weight on her arms. One day, we hope! Then she can start rocking and that leads to crawling.

Vivian has started seeing an occupational therapist (OT), who is really lovely. Vivian adores her and I think the way she approached Vivian initially has a big part in this. She wore the same top every time she came over, and always approached Vivian from the same side, and never ever got right in her face, taking into account Vivian’s CVI (corticol vision impairment). She is working with Vivian to get her to understand her own body and to explore new & different toys, and is also completing a sensory profile on Vivian.

Vivian’s speech language therapist (SLT) has given us Vivian’s very first switch, which we can record messages on. We are working on Vivian calling us using the switch; so we might record Ben saying, “DAAAAAD!” and if Vivian is playing on the floor in the living room and she hits the switch, he’ll come in and see her. This is only a week in so we haven’t seen much to report back with but will keep you posted.

Other fun stuff: 

Vivian likes to finger paint! She tried it for the first time at the Champion Centre back in November, to make some Christmas decorations, and we’ve done it again at home with her once. Will be doing a lot more :)

Vivian First Fingerpainting at Champion Centre

We went and saw Santa for the first time in early December at a special ‘Sensory Santa’ session. They booked appointments for kids like Vivian before the mall opened, so no crowd, no mall music, and no waiting in line. She had a hellish night before so I was going to take her by myself and let Ben sleep, but he joined us and it went really well.

Vivian's First Picture with Santa

She was a bit of a wiggle worm and although Santa had her on one leg at first, he ended up having to hold her pretty securely in the middle of his lap to keep her from arching backwards. His beard was pretty funny and it looked like it was tickling her so she had a bit of a grin without us needing to get her to smile, which was great because I had to stand so far away from her I couldn’t even get her attention. The sounds were bouncing around the open area of the mall and she would’ve had a really hard time hearing us trying to get her attention.

She fell asleep immediately after getting her picture taken and we walked around the mall while she slept. Ben and I grabbed breakfast together in the food court and it almost felt like a date. It’s the first time we’ve actually been out and about, like a normal family, instead of going to and from appointments with Vivian. It’s hard to believe we’ve never taken her to the mall, or even into a grocery store before that day.

We had a quiet Christmas at home with Vivian; we’ve just been focusing on making every day a good day while I have time off of work. Ben’s parents came over to exchange gifts and brought us some really yummy food and then headed to Ben’s brother’s for Christmas lunch. We would’ve gone, but our car is in the shop and Vivian’s car seat is in our car. I got to catch up with my family back home via Facetime on Boxing Day, which rocked, and Vivian and I have been taking walks every day. It’s good exercise for me while I can’t get to the gym and it’s great to get Vivian to sleep :)

PHEW. I think that’s it. I’m sure there’s heaps I’ve forgotten.

Wishing you a very happy New Year! Much love and drooly kisses from Viv ;)

Happy holidays and belated birth story

I am warning you now that this post has some sad in it. A lot, probably. Please don’t read if you can’t deal with sad today. I don’t want to make you sad. Only read until the picture of Vivian and then close your browser tab or window. If you do choose to read this post in its entirety, there’s a happy waiting for you at the end of the post to take away your sad.

Hope you had a wonderful Christmas, Yule, Beltane, Hanukkah, Kwanzaa or whatever you celebrated at the end of December, if you celebrate anything. And that this year brings you wonderful things. We had a low-key couple of weeks and I had 12! days off in a row to spend at home with Ben and Vivian. This was mostly wonderful, if you don’t count being sick at the start of it.

We were supposed to go over to Ben’s brother’s house for lunch on Christmas Day, but Ben was sick with a gastro bug that I had the week before. I thought it was food poisoning. Still could have been? We don’t know. Luckily Vivian didn’t get it. She hasn’t had anything other than that cold a few months back *knocks on wood*.

Our Christmas was very low-key as a result- we didn’t decorate this year. We haven’t in a few, actually. For me it is just too hot to feel like Christmas! But I’m sure next year we will be more festive, as Vivian will be older. We still got her a holiday outfit (it’s not red and green! Pink and chocolate-brown instead, the only thing in her size I could find at the Warehouse on Christmas Eve). Obligatory holiday greetings from the munchkin:

Merry_christmas

We got some bittersweet news on the day before Christmas Eve. A few months back, I filed an ACC claim for the events surrounding Vivian’s birth. Our GP was on annual leave at the time, so a random locum doctor filed the paperwork for me and he was very pessimistic about our chances of it being accepted. He really knew nothing about us or the situation, though. He explained that with every labor and delivery, there is an element of risk and ACC calculates that risk based on what happened and the factors involved. He said it could take a very, very long time.

Our case officer called and said Vivian’s claim was accepted. Ben had just woken up from a nap and so didn’t hear her very clearly and she had to repeat what she said a few times for it to sink in. He called me to tell me while I was at work and said that the case officer told him that this basically means that a lot of what Vivian needs in relation to her birth injury will be covered by ACC.

This is pretty big news, and while we won’t know what we will need until we need it, we know that there are means for us getting it easier than we would be able to otherwise. This is a big thing. I really am happy about this, even if it doesn’t sound like I am, but there’s a reason for me not sounding like I am.

On another level, this means that Vivian’s care didn’t go the way it should have gone when we were admitted to hospital on the night she was born. We are still waiting for Christchurch Women’s Hospital to complete their review of what happened that night, but I received a letter in the mail yesterday that included the independent ACC review of Vivian’s notes. It clearly states that the registrar on duty that night should have expedited her birth sooner than she did, and that this could have changed the outcome of events.

It is hard knowing that Vivian will not have an easy road ahead of her because of a mistake made before she was even born, and it’s a part of Vivian’s birth story that Ben and I have already asked the hospital representative to explain to us, as we felt this is where things went wrong.

I labored at home for about 10 hours on the day she was born- I was planning a home water birth and we had a birthing pool set up in our living room. Everything was going well until my water broke and I noticed some meconium in it when I went to the bathroom.

My midwife examined me to see how far along I was and found I was only 5cm dilated, so we decided to transfer to hospital and get things sorted there, as that was not a good sign.

After I was admitted, I was hooked up to a monitor that kept track of Vivian’s heartbeat, and one for my contractions. Vivian’s heart rate looked OK, but my midwife was concerned that it wasn’t as responsive as it should have been, as it wasn’t accelerating and decelerating as well as it was when I was at home. The registrar decided to take some blood samples from Vivian’s scalp to measure some levels in her blood that would let her know how Vivian was doing.

This is where things started to go wrong. Vivian had passed meconium (stool) into her amniotic fluid and a lot of it. They said it was the most meconium they had ever seen. This alone, I think, should have been a red flag that she was in a lot of distress, but her heart rate was still not abnormal enough to make anyone panic. It wasn’t until an hour and a half later that this was acted upon, and the ACC report states that if the decision had been made to perform an emergency c-section then, there is a “significant chance that [Vivian’s] prognosis could have been improved.”

After the registrar took the samples, her heart rate improved a bit, and then the samples came back in a very contradictory fashion. One was “wildly abnormal” and one was normal. The doctor thought the wildly abnormal one may have been taken from an area in Vivian’s scalp that had been pressing on my cervix for some time, and so the blood there may not have been moving around much. In hindsight we now know this was very wrong.

The registrar called her boss, the OBGYN on that night, and got his advice on we should do next. It was determined that we should wait an hour and see how far I would progress in that time. After the hour was up, they would retest Vivian’s blood and start me on an IV drop of pitocin to induce me if I hadn’t progressed.

Vivian’s blood was retested at around 10:35pm and the decision was made to go ahead and start me on pitocin to progress my labor, while we were waiting for the results. My midwife decided to wait until 11pm on the hour to start the pitocin drip, and then while we were waiting, Vivian’s heart rate plummeted. They moved me on my side to see if it would come back up and it didn’t. The alarm call bell button was pressed.

Everything after that is a blur. A half a dozen people came into the delivery room. I remember an anesthetist coming in and explaining that they were deciding whether to give me a spinal block or to knock me out under general anesthesia. Then while he was explaining both to me and getting consent as people rushed around, moving me out of the room and getting me into theater. They decided to go the GA route and my midwife came with me into the operating room. Ben couldn’t come in.

I remember the gas mask being put on and the OBGYN smiling at me as I was complaining to my midwife about the mask poking into my eyes. About 2 minutes later, at 10:58pm, Vivian was born via emergency c-section. She was floppy and unresponsive with apgars of 0 at one minute, 2 at 5 minutes and 4 at 10 minutes. She obviously was not breathing and had to be resuscitated and was rushed into NICU.

I woke up groggy and out of it, to a very solemn Ben and midwife. I was still druggy and it would have been horrible for Ben to see me not even register the fact that Vivian wasn’t with him. It wasn’t until later that I found out that Ben had been told several different things ranging from “she’s going to be OK” and invited to go to NICU with Vivian and the neonatal specialists to “she’s not going to make it” and kicked as soon as he walked into NICU with our back up midwife.

It is hard feeling like I should have known better and questioned the doctor’s decision to wait another hour before more samples were taken when the initial two came back “wildly abnormal” and “normal”. Had I not been in labor, I probably would have pushed for a more definitive answer instead of two samples that contradicted each other.

I feel like the people who were supposed to protect Vivian failed her. I feel like we failed her.

It is hard to think that the doctor didn’t take the fact that I was passing “copious amounts” of thick meconium and combine that with the “wildly abnormal” results and decide to get me into theater right then.

But that cannot be changed for Vivian. I am still processing this. I think the ACC review and our claim being accepted will help me with this but it really has brought it all rushing back to the front of my mind again.

Hopefully it can be different for another baby in the future.

So yes, this is really good news for us, but also a bit sad, as we have relived exactly what happened in very strong detail since we got that letter and reviewed what happened again. And questioned everything again. And wondered what would have happened if different decisions had been made.

For now we’re still taking things one day at a time and enjoying every little thing as it comes. And celebrating every step of progress Vivian is making.

I am sorry for turning this into a sad post but it’s a bit hard to explain without going into detail.

Here’s the happy I promised you at the beginning of the post, and I hope it takes your sad away :) I sing to Vivian that I’ll take hers away whenever she cries in the middle of the night and it seems to help. Don’t worry, the video does not contain any of my horrible off-key singing.

Leon & Damara’s first Christmas

We needed a pick-me-up after the plantnappers hit again, so Santa came on Christmas Eve for Leon & Damara…

What did Santa leave for Leon & Damara?

What is this thing?  What do we do with it?

Hmm...what is it?

It smells really interesting.  Let’s see what’s inside!

Damara always lets Leon do the hard work.

I can help with the twine, Mom.

Damara finally decides to help

Maybe if we both pull on it…

I need to floss anyway!

Maybe if I pull on this one…

It's green!

Wow, it’s fluffy, like us!

How... exciting.

Thanks, Santa!

Thanks to Ben for taking pictures!

Did Santa leave anything for your pets?

Plantnappers & Christmas

Sorry for the lack of posts!  Work has exploded with activity, I was out-of-town for a bit and then before I knew it, Christmas had come and gone.

Things in the garden are exploding, too.  I can’t keep up with the lettuces, and I’m getting so many snow peas that I could eat them at every meal and still have more! :) Luckily, I love snow peas.

I can finally tell the difference between the sugar snap peas and snow peas, by the way.

King of Blues BeansMy king of blues & scarlet runner beans are starting to come out.  It’s really cool to see these little sticks on the vines turn into beans!  Even though Ben doesn’t eat as many veggies as I do, he loves the idea of being able to grow your own food, so he’s getting a real kick from how much our garden beds are giving us this season.

Our Christmas was really lovely.  We got to spend the day over at Ben’s parents’ house and have an amazing lunch there.

I really got spoiled this year!  Ben got me a Wii with the new Zumba game & Wii Fit because he knows how much I love Zumba and how the original dvds are getting a bit boring for me.  I also got two pairs of glasses.  I haven’t had glasses in about ten years — my old optometrist used to yell at me for that.

Ben’s parents have been reading along here and spied my garden wish list post from a few months ago.  They gave me a dwarf lemon tree and english lavender for Christmas!  And Ben’s brother got me some socks (I love socks! I always need socks!) and some new gardening secateurs.

On a sad note, the plantnappers struck again early Christmas Eve morning (or Christmas Eve Eve? night).  I went outside to water the garden late on Saturday and opened the door to find that Mr. Courgette had been stolen. They weren’t so neat about the roots this time and left quite a few of them, which looked really horrible because they were still bringing up water and just sticking out of the bed, dripping.

I’m not sure if whoever doing it is just screwing with us, or if they really like courgettes, but I was (and still am a bit) heartbroken.  Ben is really upset as well…we just feel a bit powerless at this point to really try and stop them from ripping out everything else that I’ve worked so hard to grow.

Pretty fly on a pretty marigoldI was really discouraged about bringing any of the plants I’ve grown from seed out from around back, but I really have no where else to put them and what’s the point of having two new raised garden beds if I can’t use them?  I’m trying to not let the plantnappers keep me down, so I’ve done some rearranging in the garden beds since then, and I’ll do a picture post tomorrow to show you the updates! :)

Leon & Damara want me to post about their holiday as well, so stay tuned for that!

We hope your holidays are going smashingly well! 

Follow now & gwen on WordPress.com
%d bloggers like this: