Next Steps

Vivian’s doctor appointment on Tuesday went better than we expected.

She has had no further seizures since Monday afternoon; the neurologist wanted us to get more of her seizures on camera and of course as soon as he said that they (thankfully) stopped.

After asking tons more questions about Vivian’s spasms, the neurologist suggested we stick with Vivian’s current medication for a bit longer, because she isn’t having daily seizures like some babies with infantile spasms do. He said there is a small chance they could go away while on the current medication, so we are keeping our fingers crossed that it happens.

He also confirmed that Vivian will be having an EEG done this Tuesday, to find out what we can see. I am very happy that they are finally moving in the right direction on getting all the information we can about what’s going on with Vivian’s brain.

We also talked about next steps if Vivian continued to have more spasms; the doctors gave us a prescription for prednisone to get filled immediately if she does have more, so we don’t have to wait around for someone from the hospital to get one for us. The recommended dose is enough for an adult with acute arthritis…a lot for a little baby. The side effects are daunting – irritability, rapid weight gain, facial swelling, high blood pressure, immunosuppression. The list goes on.  I really hope we don’t have to get that prescription filled.

If we have to use it, she will most likely be on the steroids for 6 weeks. If they don’t work, we move on to the vigabatrin. It looks like we will not have to look elsewhere to get the treatment we need for her now that we’ve put a plan in place with her doctors on what happens next and we’re getting her EEG done, which is a huge relief!

The rest of the appointment went fairly well; Vivian’s pediatrician was impressed with the video clip I included in the last post. I don’t think she expected Vivian to be so active and happy. Vivian was actually very settled during the appointment. So much so that when the neurologist tried to get her to fuss at him, she wouldn’t. She just cooed at him instead. He had a super calming effect on her- we told him we needed to have his number so he could come soothe her when she was inconsolable for us.

We also discussed her treatment for reflux and are sticking with the current medications at the moment (gaviscon, prilosec) and assessing again in two weeks, with the speech and language therapist.

Vivian even managed to gain weight between Friday and Tuesday, when we were so sure she would have lost weight from having the rough weekend due to having seizures and low feeding volumes. Some days she has excellent feeds and others she doesn’t. There is no rhyme or reason that we can discern, and when we don’t know why she is having a crap day of feeding it really takes its toll on Ben and me, especially because of the weekly weigh-ins by the Neonatal Outreach nurse. We have spent so much time stressing about how much she is eating and feeling  pressured to get as much milk into her as we can. It’s enough to make you cry on the bad days when she’s screaming and won’t eat and we can’t figure out why.

The only bad thing that came out of the appointment is the discovery that Vivian’s head circumference hasn’t grown at all since she was born. The pediatrician said we would need to keep an eye on it. Of course Googling this led to me reading up on microcephaly, which can lead to even more developmental delays and can also cause seizures. Add that to the list of secondary diagnoses stemming from Vivian’s rough start. Trying not to worry about that too, now. Failing! I guess that’s part of parenthood?

Bonus: Vivian didn’t really cry on the trip to and from the appointment. Definitely a first! Here she is in her car seat, watching the world go by:

Watching it all go by

 

I think her eyes are turning brown. I told her to stop that. They are meant to stay blue, damn it.

Hope your weeks are going well. Leave us a comment and tell us what’s going on in your world.

Staying hopeful

Vivian started having more seizures last night, so the doctors finally scheduled an EEG for her – possibly within a week or so – and it looks like we will be changing Vivian’s medication after our doctor’s appointment tomorrow. The increased dose of her current medication is obviously not working :( As unhappy and terrified I am at her having more seizures, I’m glad our doctors are finally on board.

The seizures only happen when she is on her back, which is very strange. This led to a very exhausted family last night after 5 hours of nonstop crying due to seizures every time we would get Vivian settled. Ben and I were just beside ourselves as it looks like she is just so afraid during them and then afterwards is so inconsolable. She ended up so exhausted that she passed out on my chest (very rare) last night and today we finally figured out that if we prop her on her side they don’t seem to happen, so for now this is our solution:

Side sleeping

We were going to take her into the hospital again, but the registrar called and said there really was no point, as there is nothing they can do for her in the short-term. This was very discouraging and frustrating to hear, but later on we actually spoke to the neurologist via phone and got a lot more solid information from him about where to go from here, including a more thorough explanation of why an urgent EEG isn’t going to change our options at this point now that the Keppra (levetiraceatam) isn’t working.

The neurologist clarified what the pediatrician was trying to say on Monday: because they are sure these are infantile spasms, the main thing to do right away is to treat the seizures, not what we would see on an EEG. If they weren’t positive these were infantile spasms, they would be getting an urgent EEG done. Because any of the new medications we could try will take at least 10 days to work, the EEG we (now) have scheduled will still show the abnormal patterns of the infantile spasms and the abnormal patterns caused by Vivian’s brain injury.

So, the follow-up appointment tomorrow is still when we will figure out what the next steps will be.

I still don’t think they are giving Vivian much credit in the developmental milestone department, but at least he didn’t say they aren’t expecting much because she already has brain damage. Still not a perfect run through what I would have liked initially (I would have liked her to have already had an EEG done, or for them to have already scheduled one when we first saw these seizures), and definitely not the same thing as “we’re only treating these seizures because they are making her uncomfortable, not because they will affect her outcome.”

The neurologist also said we’ve caught them very early, and that he wouldn’t worry overly much about them causing much developmental regression now. He said if the seizures were left untreated for 3-6 months he would worry more about developmental regression, because they have a cumulative effect.

The two main treatment options we have to consider now are either steroids (prednisone) or a drug called Sabril (generic name vigabatrin). Each of them have some pretty hefty side effects, but due to Vivian already having possible renal impairment and possible vision problems, I think the doctors will suggest we try the steroids first. Still pretty afraid at this point, but a bit more hopeful that our doctors will actually be working cooperatively with us to try to get these seizures gone. I am hopeful that we will not need to change hospitals or look at going to Starship in Auckland.

I know that infants with symptomatic cases like Vivian have a harder time achieving seizure free status, but I will continue to have hope that Vivian is one of the success stories so she can have many more happy, seizure free days.

 

I recorded this yesterday before she started having more seizures. She is 10 weeks old today. Time has gone so fast. Tonight the seizures have stopped, and she’s been able to be settled to sleep pretty easily. Keep your fingers and toes crossed for us, please!

Also, a huge, gigantic thank you to everyone who has been praying for us, and to everyone who has contributed to Vivian’s Givealittle fund. The generosity we’ve been shown is so amazing. It’s good to know we will have some funds available to go to Auckland if we need to, and if we don’t, for whatever Vivian may need to help along her journey. Ben and I can’t thank you enough.

How do they know?

I talked to Vivian’s pediatrician on Monday, twice. Both times via phone. Both times were incredibly awkward.

The first time in the morning in front of our Neonatal Outreach nurse and Ben, as it was the nurse’s mobile phone we were talking on.

I asked the doctor why we were not getting an EEG done for Vivian, why were the doctors just happy to up her current medication without doing an EEG as well? Her reply was that they were 100% happy to say that Vivian was presenting with infantile spasms and that because of Vivian’s brain injury, she will already have an abnormal EEG. That they did not want to ‘chop and change’ her medication right now, although we may end up having to do that further down the line if this medicine doesn’t work. She told me that the cases I’ve read will not apply to Vivian, because she is a symptomatic case of IS, and they already know that this is stemming from her brain injury. That we need to put her into a different category.

I was just shocked by this. She said she would call me back in the afternoon to discuss upping Vivian’s current medicine to the maximum dose.

I got off the phone, not knowing what to say or what to ask. It only created more questions for me. I went to the Infantile Spasms community and asked if there were other cases of symptomatic IS that have been treated in this manner parents replied that their doctors had done numerous EEGs on their children, even though they knew what was causing the IS, because to treat IS you have to treat the seizures and the EEG activity.

Another parent pointed out that many doctors will treat the child and not the EEG- only treating for clinical seizures.

The doctor called back, and I asked again, why are we not doing an EEG? She said because it will not change Vivian’s outcome. I asked, could we be missing seizures that would be seen on an EEG though? She said yes, we could be, but that they were only treating the clinical seizures because they were making Vivian uncomfortable. Not because they would change Vivian’s outcome.

So, in other words, because my child already has brain damage, the doctors seem are unwilling to go the full mile to treat the IS fully, because they do not believe it will help her development or brain activity. The doctor said she was sorry that I had to come to terms with this. That the neurologist would “try” to be there for our appointment on 19 August.

How do they know what Vivian might be capable of? Nobody thought she would even be able to breastfeed, and she did that. They thought she wouldn’t make eye contact, and she does that. She smiles, she bats at her toys like any other baby her age would. Her head and neck control have always been very strong, and she can push up on her arms while on her tummy, just like any other baby can right now. If you talk to her she will coo at you quite happily while looking at you in the eye. I know some babies with IS cannot do any of these things. I am afraid of losing these milestones.

PlayingWithCaptainCalamari

How do they know that treating her more aggressively would not be worth it? How do they know that we are not risking regression of her development by not treating it fully? Again, how do they know what Vivian could actually do if she was given the chance to live fully seizure free?

I believe Ben and I will be asking someone to accompany us to the appointment, to make sure we get all the questions asked and answered, because I can’t seem to get my words out correctly when talking to the doctors about this.

I am praying that the current medications are enough to treat her seizures but how will we know without having all of the information? How do they know?

Infantile Spasms

I haven’t even had a chance to write about how Vivian made her debut; it was a very bumpy ride into this world for her, and a very traumatic experience for all three of us. After an emergency c-section, we spent the first month of her life in hospital in NICU with her. What is happening now relates to what happened then- long story short, Vivian suffered perinatal asphyxia at birth from severe meconium aspiration. She was placed on a cooling system for the first three days of her life to protect her brain, intubated, and hooked up to BRAINZ monitors.

We didn’t get to hold her for days. We had our first skin to skin on day 7. First breastfeeding at day 9. Not your average birth experience by any means. It’s been a very hard road since then with her, as she is a very irritable baby and the normal things that usually soothe babies do not always work for her. Skin to skin infuriates her most of the time. Baths could go either way. Showers are great, but once you take her out, it’s like you never calmed her down in the first place.

Ben and I are having an especially rough week after having to take her in to the hospital.

Vivian started having some seizures the week before last, just a few, and we didn’t know that’s what they were at the time. We put it down to stomach pain from one of her 6-week vaccinations. Unfortunately, this is not her first time having seizures, as she had some during her first week of life when she was in NICU. We had never seen them and had only read about what they looked like in her notes – lip smacking and eye flicking – this is not what we were seeing.

She had some more on Wednesday evening this week, and then again on Thursday morning. We were quick enough to catch some on video and took her in to the hospital to be seen in the Children’s Acute Assessment Unit, but of course we forgot our camera.

When we described the seizures to the doctor, she put it down to reflux, and when my reaction wasn’t really overjoyed at her wait and see approach, she told us to email her the video when we got home. She called us to confirm that it looked like Vivian was having infantile spasms, a pretty rare form of epilepsy that presents in infants. This is what I was very afraid of. Unfortunately it can be easily missed and we are lucky that we videoed what we were seeing.

They have advised us to up her anti-seizure medication, levetiracetam, on advice from the pediatric neurologist at the hospital and in conjunction with her neonatal doctor that we are seeing again the week after next. They didn’t even want to do an EEG, which is normally done if an infant presents with them, and this concerns me a great deal.

From what I have read, infantile spasms should be treated very aggressively as soon as they are picked up because they can lead to developmental regression if seizures are not controlled and EEG activity is not normalized. I’ve also read that levetiracetam is not a front-line medication for treatment of infantile spasms. The doctor tried to tell me it was, but I’ve joined the only two communities for parents of children with IS, and the parents there have overwhelmingly said I should seek a second opinion, as this is not the drug that should be used as the first line of action for these seizures.

The two main drugs used to treat IS both have chances of some side effects, but I think the risk of those happening may outweigh the risk of her developing even further brain damage and developmental regression if we don’t get the IS under control.

Really struggling with what to do here. I’ve emailed the doctor as I don’t have her number and I’m waiting to hear back as to why they are happy to make us wait to do an EEG (or not do one at all right now), and why they feel levetiracetam is the better option when the other two drugs are shown to be far more successful at treating IS. Two parents in NZ told me to take her to Starship hospital, but obviously that’s in Auckland and we’re in Christchurch, and we are so broke right now. So very broke.

Really hoping for a miracle that this can be treated successfully in Vivian. So many stories I’ve read have had unsuccessful outcomes if the child’s case is symptomatic, like Vivian’s, where the doctors know why they are happening (her brain injury at birth). The odds would be so much better for her if they had no idea why they were happening. The longer the child has seizures, the worse their developmental regression is. If you can quickly and successfully get them under control, kids have amazing outcomes.

I feel so helpless. I want to make this all better for her, and I can’t.

Smiles

New life, in more ways than one

Forgive me bloggers, for I have disappeared. It has been over a year since my last post.

And so much in my life has changed. The past year has been an absolute whirlwind of change, and I welcomed it with open arms.

My job in Wellington ended in May last year. Thanks to a wonderful woman I used to work for, I was blessed to begin two part-time jobs in Christchurch, to make up one full-time job. For the first three months after my job ended, I lived in Christchurch and Ben stayed in Wellington with our lovely kitties until our lease there ended.

Ben and the kitties joined me in July, when we were lucky to find a reasonably priced rental in Christchurch among horrible rising rent prices. So many houses were damaged or demolished due to the earthquakes, which has resulted in a shortage of affordable housing here. It’s not a spacious house, by any means; it’s about half the size of our home on the Kapiti Coast, and only $30 cheaper per week, but it’s a good little house.

Ben found a new job as well and life for us resumed the familiarity that we once knew; we were home again.

While we were up north, I was on my way to being diagnosed with polycystic ovarian syndrome. I had started that journey before we left Christchurch in 2012, but it took forever to find a doctor’s office that was accepting new patients on the Kapiti Coast/in Wellington. I picked it up again when I returned to Christchurch. My very first blood tests pointed to the possibility of me actually being pregnant, which hadn’t happened on its own even though we hadn’t been preventing pregnancy for over two years. Ben and I really thought it wasn’t possible for us to conceive naturally at that point, but alas, we finally did it!

We built dreams and hopes for the new life I was busy growing. We planned and prepared. We were so ready. We had been waiting for this for so long.

In June 2014, our family grew by two tiny feet when our daughter was born. Her birth story and journey thus far will come in another post, one that I desperately need to write for myself.

For now, I am amazed at how quickly days blur into nights and back to days again. And at how well I am surviving on naps (reminding me of my days as a breakfast chef). And how astonishing it is that I can love someone so fiercely that I’ve only known for two months. And how lucky I am to have such a devoted husband, who is becoming the most wonderful father to Vivian.

Vivian

What’s new in your world?

Golden summer days

Hello again.

I know it has been far too long since I last posted.  Work has eaten me up and I haven’t had much time to garden or do much else, aside from catching up on housework & laundry on my days off.  I also left our old faithful digital camera outside during a fine, misty rain a few months back and my phone’s camera is not as good as that one.  So my photographs have all been very fuzzy and not post-worthy.

On the garden front, not much is happening because I have no time!  It’s been a tad disappointing to have let my veggie garden get completely overgrown, but one day I’ll have it weed-free again.

Finally caught up on laundry today so I harvested our two tubs of Agria potatoes.  They are so golden.

Picture of this year's Agria potato harvest

The summer is flying by- we’ve been to the beautiful beach a few times and have had very lovely sunny days here.

My succulents on the porch are all very happy and low maintenance, which is awesome.  Finally found the name of my favorite one!  It’s a sedum rupestre ‘Angelina’.   Very happy flowers :)

Secum rupestre 'Angelina' bloom

Also, the first tree in our backyard that flowered this spring is a plum tree.  I’m not sure what kind though, but  the fruit is small and sweet, with red flesh.  Unfortunately it’s up on a ridge so I can’t really get to it.  I’ve only eaten a few windfall plums that the birds & bugs didn’t get to.  The back yard smells like fermenting plum wine at the moment, and I have to clear them in order to get to my clothes line.  YUM!

There are also heaps of blackberries taunting me from up on the ridge.  I wonder if I can talk Ben into climbing up there & picking some.

Hope your gardens are going well if you’re down under!  And if you’re up North, stay warm!  Lots of snow pictures circulating through my Facebook feed at the moment.

How is your season going?

Busy spring is busy

Just when I think I’ve settled into a nice routine, another big change happens.  There’s no way I could’ve done the Ultimate Blog Challenge this month.  Kudos to those of you who are!  And to those of you preparing to do NaNoWriMo.

No more working from home on the weekends soon.  I’ll be working a more solid Monday-Friday.  No more days off in the middle of the week that were so handy for running errands!  I have never had weekends off for any extended period of time, so it will be different.

Ben’s job has had a major delay that means he has the next 2-3 weeks off.  Although we could really use the money, part of me is sort of happy about that, because I’ll have more home-cooked meals made by his hands.  I enjoy cooking, but I am a firm believer that things taste better when someone else cooks for me.    He’ll have more time to bake new healthy treats for us.  I keep meaning to post a bran muffin recipe that he’s been making every two weeks or so.  Must do that this week sometime.

Weeds, weeds, everywhere!Garden updates:  I’ve discovered that this place is heaven for weeds.  There are thousands of weeds sprouting in that veggie bed…I’m going to spend the next year picking them out.  It’s horrible.  I’m guessing this is because the landlord just turned the soil over before we moved in.  I really don’t know.  I never had so many weeds to get rid of in Christchurch at either house we lived in.

My arch-enemy cleavers is here as well, smiling at me from beneath the camellias and mandarin bush out front. Ok, I’ll stop grumbling now!

I planted some peas and beans in the garden bed about 10 days ago, and remember dreading the weather shortly after that.  So much rain in the past week and a half — some really torrential downpours — I thought for sure the peas and beans wouldn’t sprout due to rot or being washed out.  As I was glaring at the weeds today, I spied them pushing through the soil, so I’m very happy about that!  Will need to get some twine to make a trellis for them soon.

Growing cherries on the treeI’m fairly sure the lovely flowering trees on this property are cherry trees now.  Still not sure if they are eating-cherries or not, though!  They are still beautiful, even without their flowers, but they add to the weeds too.  Hundreds of cherry seedlings beneath the trees to weed out…it’s going to take me two weekends to get all the weeding done around here!   Not grumbling again, I swear.  I’m sure it’ll be good exercise.

And on the topic of exercise, I’ve managed to lose 12 pounds since August.  I’m feeling really good about that.  Ben and I joined a gym and for the first time I have a regular exercise commitment to myself.  I really enjoy Ben being my work-out buddy and I think having him involved is the difference this time around!  While he was working he was too tired to go, so I have been by myself quite a few times.  I am down a pants size and I can finally see my collarbone again.  Another thing I’m happy about.

Taking time to note these positives is what keeps me motivated!  Only 38 pounds to go to reach my long-term goal.

Have you made any goals lately?  Reached any goals lately? Let me know!

Pushing past challenges & finding joy

Progress isn’t always easy, as I’m sure you know.  Sometimes the most satisfying type of progress is the kind you have to work at.  The kind that puts you outside of your comfort zone.

You might find you have to grow a bit in order to stop feeling overwhelmed.  Push past the discomfort and fear of failure and make things happen.

I’ve discovered that’s what’s happened to me over the winter months.  It was so easy to get overwhelmed with the move, a new rent rate, new city, new neighborhood.

A new budget to make my pay go further while Ben looked for a job.  Having to make sure I actually have a packed lunch and snack, instead of wandering into the kitchen while working from home.

A new morning routine to make sure I’m up and on the early train in to work in a new office environment.  New commute costs.  New car costs (we’ve never had a car while I’ve been in New Zealand).

On top of all that I’m certain that I suffer from SAD — seasonal affective disorder, so I felt really crappy for a lot of this time, and was very tense, which didn’t help my marriage any.  Ben and I fought a lot during the first few weeks we were here.  I think most of it was the stress from everything being so different, and all the adjustments we were having to make.  All of these new things to adjust to and new challenges to push past at once where a lot for us to take in.

I realize that with those new challenges came some amazing rewards to enjoy.

A new house to make into a home.   A new garden with new secrets and new plants to discover.  New sounds to enjoy as I work in the garden.

I’d never had the privilege of hearing a tui in person before moving up here. If you’ve never heard one before, you should check out this video of a tui singing:

On a quiet night with a gentle breeze, I can hear the waves crashing nearby.  It’s a wonderfully calming sound, and I hadn’t realized I actually missed living near the ocean.  It felt a bit like coming home when we moved here.

Ben really loves the area we moved to, and it makes me really happy that he does.  If he hated it I would feel horrible, because we moved here for my job.  He has luckily found some temporary work on a construction site not too far away, where a retirement village is being built.   I’m hopeful that he’ll find something he really enjoys soon, as I know it’s not what he really would like to do for work.

Spring has definitely given me a different outlook on everything.  More sunlight hours means more time for me to get things done.  The sun also helps me not feel so overwhelmed by things that would seem insurmountable during the dark & dreary months of winter.   I feel much happier about all the changes we’ve made now that things have settled down and we’re able to actually take time and enjoy the little things.

Do you ever notice you feel down or in a bit of a rut during winter months only to have the sun help you break through it all come spring?

Hello, spring. Please stay a while.

It’s officially spring here in New Zealand.

Yesterday we received glorious rays of sunshine all day on the Kapiti Coast, and Ben and I spent as much time as we could outdoors.  I was able to get some more weeding done, along with getting all of our laundry dried outside.  I made a note to myself to never use bark for mulching on top of weed mats.  Weeds love it.  You can’t keep them away.  They grow through the weed mat, honest to goodness.  I still have a ways to go in some areas of the yard!

We had the kittens (they’re not really kittens now) out for a bit, so I decided to get the camera out and capture a few action shots.  It’s harder than you think!  Especially with our little old camera that isn’t very fast.

Ben and Leon having a go at tug of war.  Or possibly Leon thinking he should be walking Ben, instead of the other way around?  Leon loves to take toys and just walk off with them in a very determined fashion, tail held high.

Behind them is what I believe to be a passion fruit vine, and a jasmine vine trying to take over the wire trellis going up the wall.

Winters and Moose (the big cats) are never far away when we’re outside, and before long they decided they were kittens again, too.   They’ve both been more playful since we moved here, both inside and outside.

There’s more green here for them to enjoy, I think.  The yard is huge compared to our last house.  The grass will need a trim soon…the house was advertised with the condition that the owner would take care of the lawns, but the land lord hasn’t said anything to us about it yet.  I want to find a good old push-mower anyway.

Moose decided watching was far better than trying to actually catch the thing everyone else was chasing.

Today there wasn’t a true patch of sun at all.  A slight chill was back in the air, and it was raining before long.  Have I mentioned that it rains at least once every two days here?  I’m not kidding!  In a way I don’t mind it, but I’m itching for it to stay warm and dry for a few days in a row.  As I type these last few words, the rain has turned into a pour.  At least I like the sound of rain on the roof!  It’s very comforting. :)

Have you done anything to greet the new season?

Snapshot sort of Sunday

Hey again!  Slowly getting back into things.  Two posts in one week is an improvement, at least in my mind.  Blessed Ostara to friends here in the southern hemisphere and happy Mabon to you folks up North!

Even though I haven’t been posting much, I’ve still been taking some snapshots here and there over the past few months.

One of the lions at Wellington Zoo.  I was lucky enough to go twice last month, as they had $5 Wednesdays in August.  It was nice, but I couldn’t help feeling bad for some of the animals there — some of the enclosures were pretty small.

There are so many honey bees here in compared to our last house.  I stood very still beneath this tree at the top of our driveway and could hear them buzzing away.

Does anyone know what kind of tree this might be? We have two like this on the property.

This is one of my favorite plants — our friends Anthony & Alicia gave Ben and I this planter full of succulents they picked out as a wedding present.  Unfortunately the largest plant in the middle of the planter was damaged during the move, but I think part of it will recover.  Succulents are amazingly resilient!

Random garden update:  I’ve popped some spinach, lettuce, and kale seedlings into the back garden bed.  The days are getting warmer here, and although the nights are still pretty nippy, they haven’t died yet.  First time growing spinach or kale, so I hope they go well!  I read that you can grow them in spots even if it doesn’t get full sun.  The placement of the garden bed is on the south side of the house, so it doesn’t get full sun.  Hopefully it gets enough to give me some salads!

How are things going in your garden?

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