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!

We made it to a month!

Happy Samhain and Beltane!

It’s been 4 weeks (and one day) since Vivian’s last spasm! We are quietly hopeful about this. Her last does of prednisolone was last Monday.

We haven’t had any follow-up appointment with our neurologist, though. Not sure if we will? We did have a follow-up with her pediatrician this week, which went OK.

Vivian is doing well, all considering! Her sleeping times have started to lengthen over the past week, which has been amazing for Ben and me. Although she still needs to be bounced gently to sleep in her hammock (at around 10-11pm or so), we are able to get her transferred to her bassinet successfully on most nights, and sometimes even before midnight. She has started sleeping through to about 4-5am with only one or two wake ups in between, which hasn’t happened since before she was on steroids.

The main thing we are working on at the moment is keeping her reflux symptoms in check without making her constipated, along with trying to get her intake up. And also, trying to get her feeding times spaced out more, and her feeds to be bigger in one session. While she was on steroids, she would easily take 120ml of expressed breast milk at one time, over 30-40 minutes, but once we started the wean off of them this all went downhill. She would only take 10-30mls at any given time, and because of this she wanted fed every 20-30 minutes, which didn’t help with her sleep cycles. I think the steroids played a big part in her cat naps as well, though.

Her pediatrician suggested we try reviving the feeding plan that the hospital gave us before we came home, and since Wednesday her feeds have gone up to around 40-50ml every two hours or so. We also created a very bad habit of feeding her while she is sitting in her hammock (due to the steroids making her HANGRY at night), so now she really won’t eat unless she’s sitting in her hammock. She used to be fine taking a bottle in our arms, so we are working on getting back to that too. It’s going to take a bit of time.

Vivian’s intake is slowly creeping upwards, and she hasn’t lost any weight in the past two weeks. She was slowly gaining until this weeks, and is holding steady at around 6.5kg. Her pediatrician really isn’t concerned about her weight dropping a bit, as she is heavy for her height at the moment, due to the steroids. This gives me some confidence that we can get her feeding sorted without her losing too much weight. We have another follow-up in 3 weeks, to keep an eye on her weight and intake.

Her head circumference went up a centimeter in the past two months, to just under 39cm. Not a huge growth, but still a growth. Her pediatrician still hasn’t actually told us what this will mean for Vivian, so we will be asking more about it during our next appointment.

Developmentally, she’s still chugging along. She’s started to kick her legs very quickly and to bang her heels down on the changing mat or play mat. She’s done a few half rolls, so we think she may start rolling over in the next month or so! She’ll will grab toys hanging above her now, which is amazing, although we are working on her opening up her thumbs more. Tummy-time is still a bit hated, unless it’s on Ben or me, and she does OK lying on her side and playing now. We’ve also gotten her a bumbo seat, which we tried out for the first time this week (she only thought it was OK, not awesome). And we’ve gotten our first half giggles!

 

Vivian has also started tolerating being worn in a baby carrier, which is HUGE. We wanted babywear so badly and it was so disappointing when we realized she hated being worn early on. Especially because being worn and carried upright is so good for development.

Thanks to a baby shower gift (thank you Evie and Jarratt!), we had a consultation with The Sling Lady here last month and she was amazing! She showed us some different carrier types and worked with us to find one that suited Vivian’s individual needs. We ended up borrowing a mei tai from her (hop-tye brand) and slowly started gaining confidence getting Vivian up in a front carry with it. One morning, I helped get Vivian up in the carrier on Ben, so he could sort out dinner prep while she was awake. I managed to get some quick pictures and left for work with both of them happy in the kitchen.

Hop_Tye

Thanks to Vivian’s fund we were able to buy our own hop-tye and we are now working on wearing her a few times a week so that she’ll tolerate it for a bit longer and we can eventually go for walks and outings without a pram (pram is hit and miss with Vivian). This will really come in handy if Vivian’s seizures come back as well, since she can’t be left on her back while she’s having spasms.

We are so thankful for all of her progress. Vivian has come so far over the past few months! We really wouldn’t have made it through without all the help and support from our friends and family and the kind donations to Vivian’s Givealittle fund.

Work is going well; it’s very busy at this time of year! And we have finally found a house to rent, after applying for half a dozen or so and being passed over. If all goes to plan, we sign the lease on Monday and will most likely be moving in the next 2-3 weeks. We have feelings of relief, and some excitement mixed in. Also, slight feelings of panic as I think about how much we need to de-clutter and how bad the garden has gotten here. I haven’t weeded the flower beds since the day Vivian was due! We’re looking at getting a one-off garden tidy to help with that before we move though. Oddly, our rental agent wants to do a scheduled property inspection the week before we leave? I don’t understand that!

Bring on the rest of spring- here’s hoping things keep improving!

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!

Starting Over

We are back to day one, after making it to 5 weeks and 2 days of no seizures. Vivian had some on Thursday morning.  It was a very sad morning for Ben and me. Heartbreaking.

We started weaning her off the prednisolone over the past few weeks. This week, she is down to 2ml a day.

Our neurologist is on holiday  until Monday. The other neurologist, who treated Vivian when she was very young, said to watch her over the next few days before upping the steroids back up to 4ml. We haven’t seen any more seizures since Thursday morning, but now we are back to watching her like hawks, evaluating every movement and cry. We will be calling our neurologist on Monday to see what he says as well. I don’t know what this means for her, or what it means for her treatment.

A lot has happened over the past two weeks, other than seizures.

I’ve gone back to work almost full time. I almost had a panic attack two days in, when our property manager called me and told me we had 6 weeks to find a new place to live. The owner of our house needs to move back in, because he can’t find a place to stay while EQC comes to fix his house…

The only other time I’ve sobbed like that is when we got Vivian’s MRI results. I really at that point didn’t feel like I could do anything. It was just another thing that was happening to us. And it sucks, it really does. It seems like one thing after another keeps happening and we can’t catch a break!

It is really hard to find a rental property in Christchurch at the moment for a similar price, with similar features (allows our 4 cats, stand alone, 2+ bedroom, space for a washer and dryer, not on a main road, dishwasher). We applied for one place but it was out of our budget and they weren’t willing to budge on the rent amount. It is not a renters’ market here due to lack of supply and huge demand, after the earthquakes. Part of me thinks it was stupid to ever come back to Christchurch now. Maybe we should have stayed on the Kapiti Coast.

If we don’t find something by the end of next week, I think we may look at options with shorter leases (there are a lot of rentals with short leases…so I’m baffled as to why our landlord couldn’t manage to find one for himself).

We got to take Vivian to an osteopath last week. It was really very interesting to watch. The osteo was very gentle and it was hard to tell she was doing anything to Vivian at all. When we left, she said Vivian may have a big sleep, a big feed, or a big bowel movement…she did all three the first night after the appointment, which was amazing (in the real sense of the word- she filled THREE diapers, and slept for first a 3-hour stretch and then a 6 hour stretch that night, and had a great feed after a week of crappy feeding). We have two more appointments set up. They are pretty costly, but seem to be worth it.

The osteo advised us to stop Vivian’s gaviscon…because she thought Vivian being on both gaviscon and omeprazole was overkill, and the gaviscon makes many babies constipated.  This isn’t the first time someone other than Vivian’s hospital pediatrician has told us they would treat her reflux differently. Our GP told us he would prefer we slowly wean her off of her omeprazole…but he had no issues with gaviscon. It’s so hard to know who to listen to! We did try her with no gaviscon for a day or two, but she was really miserable, so we are now back to at least two-four doses a day.

After the amazing night we had following that appointment, Vivian has gone back to being extremely unsettled and not eating or sleeping well again…one step forward, three steps back.  Today she didn’t even make it to 600ml. I am worried again about her losing weight now. When she was on the highest does of steroids she was taking closer to 1200ml a day.

We aren’t getting much sleep at the moment because she’s not getting much sleep at the moment. Ben is getting even less sleep than I am and I feel awful about it. It’s easy for people to say sleep when the baby sleeps, but when the baby doesn’t sleep, what the hell are you supposed to do then? I wish she would nap more for him while I am at work, so that he can get more sleep.

On top of that, she still has the oral thrush, which is really coating her tongue and probably her throat- Ben took her in to the hospital for her weekly neuro clinic appointment, and asked the doctor to change the anti-fungal medication she has been on for almost a month. She didn’t want to change it and told Ben to wait a few more days. I don’t think she really understood how badly the thrush could be impacting Vivian’s eating at the moment…and I was pretty upset about her medication not being changed. Apparently oral steroids (and steroid inhalers) can really allow thrush to gain a strong foothold in the mouth, so in most instances where steroids are being used, the drug that is commonly prescribed is flucanazole. I don’t understand why they didn’t prescribe that after Vivian showed no improvement three weeks into taking the first medication, Nilstatin. I called them this afternoon and finally got a prescription for flucanazole, so hopefully that works.

I’ll leave you with a video recorded last week of Vivian babbling to herself babbling…babyception of sorts :) She has gone quiet on us this week, and we’ve not had much babbling out of her. Hopefully she’ll start talking our heads off again when she’s feeling a bit better.

Milestones and Memories

Another week has flown by and I’m happy to report that Vivian is still seizure free! :) This is so awesome. *whispers* Day 25.

On Monday we went to Vivian’s first session at the Champion Centre. It was pretty interesting, although it was very short! The team got a chance to see Vivian in action under a play gym and got to know us as a family a bit more. I think at this point it will be a slow and steady progression (I hope) to new things with her there.

She is also hitting some milestones in the coordination department with her visual tracking and reaching for toys. We noticed her showing some real determination last week whenever she was on the changing table where her mobile is. Although she would be tracking the toys visually, she would be grabbing off to the side and not really grabbing at the ones she was looking at. Then suddenly something clicked a few days ago and she is now actively trying to grab the one she is looking at for the most part! She does a bit of both in the video below.

 

She is using her right hand more than her left at the moment, and the physiotherapist at the Champion Centre showed us how to stroke her left arm to give her some spacial awareness of where her arm is. As soon as she did that, Vivian started reaching with her left arm as well.  You can see she likes to keep her hands in fists most of the time, unless she’s really relaxed. Hoping this continues to improve with time, too.

She keeps surprising us in many ways! I can’t wait to see if she can roll over eventually. From the way she kicks about when she’s upset, I think she will be able to.

We had a follow-up with the ENT specialist on Tuesday morning. Vivian has moderate conductive hearing loss in both ears and they’re still unsure as to exactly what is causing this. She is being referred to an audiology clinic to get fitted for hearing aids sometime soon. It makes me wonder how much of a difference we will see once she has the hearing aids in and on. I am afraid that she won’t like them or that we’ll struggle with taking them out/putting them in during the right situations. She is so easily over stimulated, I would hate to add this to her plate!

We also had an appointment with neurology on Tuesday (haven’t seen her actual neurologist for a few weeks. Saw the registrar again) and because Vivian is still seizure-free, we have started weaning her off of the prednisone! So her daily dose of 8ml has been lowered to 6ml per day.

You would think this would mean an improvement in Vivian’s overall mood but we’ve seen the opposite effect. Vivian is back to having some extremely unsettled periods (non-stop high-pitched screaming where nothing seems to sooth her) and she’s returned to not eating as well, like she was before we began the steroids. I have read this is a pretty common side effect of weaning off steroids appetite suppression and irritability. It’s made for a rough couple of nights so far, but luckily she is asleep as I type now. Long may it continue!

I am hoping that after the wean she will continue to eat better than she did before the steroids and not lose weight, but time will tell. She’s now weighing in at 6.15kg, which is up 750g from what she weighed the day we started the prednisone, 3 weeks ago. You can definitely see it in her face! Chubby cheeks galore.

Although she is extremely unsettled sometimes, her smiles have returned in full force when she is happy, and she’s started talking to us nonstop as of yesterday. I’m talking full-on conversations! So cute. And really great eye contact during them. It really cracks us up when she just talks and talks and talks.

She’s started staring into my eyes very intently at night after Ben’s gone to bed and smiling at me. And enjoying kisses! So, so amazed at how happy this makes me. We were told that she may never be able to register what she was seeing at all due to the damage in the visual center of her brain and look at what she can do already.

The only downside to our new googly-eyed girl is Vivian seems to only have eyes for me at the moment! Poor Ben is getting the huge, adorable frown whenever he kisses her, or worse, real tears.  Hopefully this improves quickly, because I’m due back at work on Monday! I already feel guilty just thinking about her crying at him while I’m gone :( I didn’t think it would be this hard to go back to work. Maybe under normal circumstances, it wouldn’t be, but alas. Our ride has been anything but normal from the get go with Miss Vivian.

I’m tucking all of these magical moments away to save for later. I wish memories didn’t fade the way they often do. I realized last week, once my nose cleared up after my cold passed, that Vivian no longer has that newborn smell :( It disappeared when we were sick and it made me SO sad to discover that it was gone! I actually cried. I keep sniffing her head hoping it’s back, but so far it hasn’t been. If I had known before I got sick that it might be the last time I smelled it, I would have smelled it a lot more often. For shame!

Hoping the seizures continue to stay gone. And that her newborn smell magically comes back. :)

How has your week been?

The days are blurring together

Well, we’ve made it past the 2-week mark of no seizures! 16 days today. It’s really fantastic. I again don’t want to jinx anything, so don’t want to dwell on it!

The days are blurring together and we are so exhausted. Emotionally I am all over the place. Vivian is doing well, but she is definitely not the happy, smiling baby she was before we started the steroids. It’s been days since we’ve gotten a smile out of her and she is just so hungry *all* the time. Like hulk hungry. Hangry even. I’m surprised she hasn’t turned green and split her onesies yet. She’s cat napping instead of getting good naps in and on top of that, has stopped sleeping through the night in two good chunks. Any time she wakes, she is hangry, no matter if she’s been asleep 3 minutes or 30 minutes. It’s like she has no off switch on her stomach.

This means she is guzzling through the donor breast milk we had stashed and I have spent most of the past week stressing about being able to meet her feeding needs. One of our donors is going back to work this month and the other two screened donors who helped while Vivian was in hospital have had things come up which mean they can no longer donate currently either.

We got very lucky and found a Mom up in New Plymouth with a decent frozen stash, along with a super lovely mother out in Leeston who read Vivian’s story and wanted to help, so we are good for milk for the next little while! I am hoping this is enough time for me to source a few new donors so we are not so reliant on one person’s supply. I so wish I could produce more milk for Vivian. It is the most awkward and humbling experience to ask someone else to share their baby’s food with Vivian. I am forever thankful to the ladies who have helped us thus far in making sure Vivian has breast milk and would love to continue using breast milk as long as we possibly can.

On top of Ben and I being sick last week, Vivian did end up catching whatever virus it was, and we ended up taking her into the hospital last Thursday to get checked out. Normally I probably wouldn’t have taken her in, but her doctor advised us to bring her in if she gets sick while on the course of steroids. She did get the all clear, but she developed a pretty chesty little cough and has since lost her voice (something Ben isn’t particularly upset over). She also has a case of thrush in her mouth and on her bum, so we have to treat her for that. Apparently steroids can mess with babies’ systems in that way as well, and thrush/yeast infections are quite common while on steroids.

On Saturday, we caught up with some friends who helped change the oil on our car and ate yummy donuts. It was neat getting out of the house with Ben, and not to a doctor’s appointment. Vivian was pretty good during that visit and even took a nap on me! :)

Sunday, a lovely lady came to see us and dropped off some breastfeeding supplements we ordered from the US. Although we’ve only known her a short while, she is really awesome to talk to and is a great source of positivity and encouragement about all things breastfeeding-related. She also referred us to Bellyful, and we are waiting to see if we can be accepted twice, as they already helped us out with some tasty meals back in July.

Monday, we met the team at Champion Centre; we start weekly appointments there next Monday. The specialists seem really wonderful and I hope that Vivian thrives with their help.  I am still very disappointed with how long the referral process took with this, because I’m now due back to work on the 22nd of this month. I get to go to ONE appointment there with Vivian. We have been home for almost 10 weeks now. I know the important thing is that she is going at all, but I wonder how much easier our journey could have been thus far if we had gotten the support we needed from the get go with this, especially when we were struggling so, so hard with Vivian’s feeding.

Tuesday, Vivian and I had lunch with a couple local Moms with whom I started my pregnancy journey. They have been a strong source of support for Ben and I and so much fun to get to know online. It was awesome meeting them in person and talking with them and seeing how lively their little ones are. At the same time, it was hard to see how much their babies are doing and where Vivian is in comparison. It’s not like I actively want to compare her to them. It’s just very hard to ignore when it’s right in front of me. I got a bit unexpectedly teary while I was there and felt pretty embarrassed about it. Hoping that outings and catch-ups will get easier, but I think it will take me a long time to see other babies and not feel slightly sad/disappointed/envious/etc. I think any new mom of a special needs child would feel the same way for a bit, at least in the beginning.

Yesterday, Vivian had an audiology appointment for more hearing tests and at the same time I had my follow-up with the OB who performed my cesarean section. The hearing test didn’t go so well this time because Vivian didn’t want to sleep while we were there and we were only able to get testing done on one of her ears in the last 15 minutes of the 2.25-hour appointment. Directly after that appointment, we were due at a neurology follow-up where Vivian’s blood pressure and urine were tested. Blood pressure was in the high-end of normal, urine was clear, and we were told that Vivian’s EEG showed no abnormal/epileptic activity. If we continue to see no seizures, we may be able to start weaning Vivian off the steroids at 4 weeks instead of 6 weeks, which is awesome news.

Because there was no abnormal activity on the EEG, the registrar said that if Vivian’s seizures were controlled by the steroids, they would not be doing another EEG. I’m not sure if this is normal for IS treatment or not. We have another weekly neuro appointment next Wednesday, so I will be asking for more information about the EEG results then, because although there was no seizure activity, I’d still like to know what else it showed. Hopefully we will actually see the neurologist this time, instead of his registrar. She was really nice and did answer all of the questions we had at the time, though.

Today we have a Te Puawaitanga nurse appointment for a well child check. Thank god this one is at home; we all just need a day at home after a busy day like today. Vivian was so over tired by the time we got home. Not a happy camper! But trips out are getting easier. Maybe it’s an age thing? She does still seem to be easier to settle now than she was a month ago, thank goodness.

So, lots of good points over the past week to be thankful for.

I just want to sleep. For a very long time. I know this will never be possible, ever! I try not to mourn the days of being able to just nap as long as I wanted! At least I know THAT is at least a normal part of parenthood.

Tummy Time

 

No Jinxing

I managed to get Vivian asleep in her bassinet tonight, so I have time to write a quick post.

We’ve made it past the one week mark! In fact, we’re now into day 10, which puts us at a tie for the longest Vivian has remained seizure free since she started having infantile spasms. I’m almost afraid to keep counting days because I don’t want to jinx anything.

It looks like my fears about Vivian acquiring an oral aversion can be laid to rest. She is eating like a horse now, and will take a bottle almost any time it’s offered, instead of just after waking like she normally would. And she’s putting on weight well again after not-so-great gains since her follow up appointment with her doctor; she put on 100g in the past two days! I know rapid weight gain is a side effect of the steroids, but I’m hoping this one isn’t too bad for her in the long run.

She will also tolerate the prednisone syringed into her mouth without too much hassle, as long as we do it in small amounts and distract her with bouncing and/or funny faces, and because she’s so hungry, she will happily take her gaviscon with a bit of milk in a bottle too. So medications seem to be easier given all around and we are falling into a good rhythm of sorts.

We had some really bad sleeping days this week, which was hell on Ben and I because we have both been sick. We cancelled the meet & greet at the Champion Centre because we were afraid of getting other folks sick, and I cancelled my follow-up appointment with the doctor who delivered Vivian today due to still being sick. I hope it gets rescheduled soon (it was supposed to be a 6-week follow up…Vivian is 12 weeks now). I have a feeling I should’ve just gone to the appointment, but I feel like death warmed over.

I am praying Vivian doesn’t catch it and am doing my best to not breathe on her. It’s hard for me not to kiss her little face, though!

It seems like I’m her favorite this week. Vivian has even started falling asleep in my arms on a regular basis, which is so lovely :) And she is becoming much more vocal with us. Ben’s new favorite pastime is having babbling conversations with her on our bed, which is adorable. She also seems to be easier to settle when she is upset, which is also something I don’t want to jinx. I’m not sure if this is due to the prednisone tiring her out, or what, but I will take it.

And we are still getting smiles. I was so afraid that the steroids would make her super unhappy, but that hasn’t happened yet. She really digs this new mobile we got off Trade Me- it’s pretty neat in that it can clip on to anything. We saw one like it at the follow-up appointment and Vivian seemed to like it, so I hunted one down. Happy to say it’s the best $20 we’ve spent since we got the Nature’s Sway hammock! She really loves tracking the little faces and I’m so glad she is still smiling every day.

Vivian 12 weeks

We have an appointment with her neurologist on Wednesday, after another audiology appointment. Hopefully he’ll have some news about what her EEG showed for us then. Not looking forward to the audiology appointment, though! It’s the fourth time we are getting her hearing tested; there seems to be something mechanically wrong with her ears (not neurologically, like you would expect considering everything else going on) and we have been referred to an ENT specialist to try to pinpoint what is going on. At this point we’re not sure if she will need hearing aids or perhaps require surgery. Lots of unknowns.

 

EEG, Early Intervention, and Prednisone

Vivian’s first EEG was done on Tuesday.

Ben is unfortunately sick with a cold/cough thing, so we thought it best he didn’t go to the hospital to make anyone sick. This meant it was just me and Vivian headed to the hospital. She cried the entire way there :( It was really rough.  She cried the entire 15 minutes I had to wait to get a parking spot. When I finally got her capusle clicked into our snap’n’go stroller system, she passed out from crying so much. Then of course, once we got into the appointment, she screamed the entire time they fitted the special cap on her.

The poor technicians were just beside themselves (and me too at that point), and started asking me if I’d tried this and that. I had to tell them that no, she wouldn’t take a bottle like this and that no, she wouldn’t be interested in her pacifier when she was screaming her head off. It took about ten minutes for me to calm her down again and then she passed right out on my shoulder, which isn’t something she normally does at all. It was definitely sleep from too much crying, not from being soothed or calmed. I hate it and it makes me feel like a bad mom when it happens :(

We won’t know the results for a few more days, when we are due back at the hospital at some point to see the neurologist again, and to get Vivian’s blood pressure checked.

We finally were contacted by our early intervention provider, The Champion Centre.

We should have been referred on to Early Intervention the week Vivian was discharged from hospital (first week of July), but due to whatever crappy reason, be it shit timing or lack of good procedures, we only got referred last week and there is a 3-week wait at all of the four providers in Christchurch. 8 weeks of no support there for us and Vivian, after all we heard about was that our early intervention provider would help with this or that.  I am angry about this. I am angry about a lot of things that have happened in hospital and things that should have happened in hospital but didn’t. It seems like a lot of times we have fallen through cracks in the health care system with Vivian and she’s not even 3 months old!

We had our initial meeting with someone from Champion Centre yesterday and will be going to a meet & greet on Monday to meet the team of specialists that will be working with Vivian in the months and years to come. These include a physiotherapist, a speech and language therapist and an early intervention teacher. It’s a lot to take in, and I’m not sure we made the right decision. We could have chosen to have a home-based provider, and I’m starting to think that might be the better way to go because Vivian is so easily thrown off of her feeding and sleeping if we have to take her anywhere. They will most likely do the first few sessions with Vivian at home due to the prednisone’s immunosuppression side effects, but after that we will need to take her in once a week.

Ben and I are running really low on energy this week and with Ben sick it’s been really hard on both of us. He’s been absolutely amazing even though he feels like death warmed over and taking extra precautions around Vivian to make sure she doesn’t catch whatever he has. Fingers crossed she doesn’t get sick! We have appointments every day next week, so I can’t afford to get sick either.

We started Vivian on the prednisone Monday evening.

It tastes sweet at first but then has a horribly bitter aftertaste. I think she’s starting to show some oral aversion now…she used to be a hardcore pacifier fan while falling asleep and now she won’t take it after having prednisone, unless she is very, very sleepy. She spits it out and grimaces, or grimaces if you even put it near her mouth.

Her poor tummy has been very sore yesterday and today- she has started spitting up (spilling as New Zealanders say) a bit and she’s never done that before. She is also crying a lot more than usual, and she is already a baby who cries *a lot*.

You can just tell it hurts. She brings her little legs up to her stomach and screams. And it’s messing with her bowel movements as well, giving her horrible gas and painful bowel movements. Not fun at all. And this is only the end of day 2. I don’t know if we can take 6-8 weeks of this and still have a child that is willing to eat on her own. :( Her intake volume has been down the last two days due to her not feeling well. I am doubtful she will gain weight this week at the rate she’s going and the amount of crying wasting her calories.

I wish we didn’t have to syringe any medicine into her mouth at all; this makes medicine number four, and we have to give it to her four times a day, with food, which isn’t going to create an awesome association with her food.  I thought we might be able to disguise the prednisone in some breast milk, but it’s got too strong of a taste, and some parents of IS kids have said their child refused to take a bottle after starting on prednisone, so my idea of putting it in a bottle is not going to happen.

Vivian is exclusively bottle fed because she refuses to latch for breastfeeding. My c-section, her month-long stay in NICU, the pacifier being introduced (without our permission) by hospital staff, and all these medications being syringed into her mouth have caused some nipple confusion. And my letdown isn’t fast enough or long enough for her, so she prefers the bottle. If she starts having a bottle aversion, we’re really screwed.

All of the above being said, we still managed to get a few smiles from her today and she had a long conversation with Ben after he discovered she likes it when he makes monkey noises at her. :) I hope we can still get at least one smile each day while she’s on the prednisone. It looks like it’s going to be a hard couple of months ahead for us. I don’t know how other parents get through it. One day at a time, I guess!

Starting Steroids Tomorrow

Vivian has had more seizures this evening :(

Finally got her to sleep about an hour ago; hoping she stays asleep and rests up so she can have a good feed, as they really make it hard to get her settled and to sleep which affects her eating because she gets over tired.

Looks like we will be filling the prescription for the prednisone tomorrow morning and starting down that road. I am really worried about what this will do to her. I know that if it stops her seizures it will be worth it, but I’ve read so many stories about side effects and just the rough time overall that they cause.

I am trying so hard to stay positive, but I am so sad tonight.   I managed to find a place offering free counselling and began going last week. It has helped some. On days like today it feels like we are back at day one though. Like we’ve been put back in the middle of a bad dream that we can’t wake up from. We’re reminded that Vivian won’t have a normal, healthy life. It’s easy to forget when we’re taking care of Vivian on a good day. But on nights like tonight, when I remember, it’s so hard.

Please keep your fingers crossed for her that she makes it through this without getting really sick.

 

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