Letter to the NICU Parent Who Feels Out Of Place

I so wish I had found this right after Vivian was born.

Letter to the NICU Parent Who Feels Out Of Place.

Intake and Outtakes

Vivian has been doing well. We are still focusing on upping her intake, so this post is mostly about that (and her output, which you probably aren’t interested in knowing about, but the two go hand in hand, you see). So to compensate for the TMI, you can have some lovely outtake photos that I love, from our attempted holiday photos :)

Vivian Singing

Back to the intake, though. At this point it doesn’t look like we’ll ever get back to breastfeeding, which I’ve accepted. My boobs don’t want to work like they should, and so my let down is too slow for Vivian now that she is used to the flow of her bottle. She refuses to latch and has for a few months now.

That, plus the weight gain struggles after her wean off the steroids, means the best thing for her is to keep on with the bottle and not really try to get her back to the breast. If we hadn’t had the infantile spasms hit her and the steroids, I think we would still have a good breastfeeding relationship, even if we needed to still supplement with donor milk using a supplemental nursing system.

Vivian Babushka

We were doing well with her intake, but over the past month we have been catching up on Vivian’s 3-month vaccinations, which has resulted in a very unhappy Vivian for the week following each shot.

While she was on prednisolone, we chose not to vaccinate, as the steroids have immunosuppressive effects. Now that we’re catching back up, we’ve chosen to break up the vaccinations a bit so she doesn’t get a heap in one day.

Kids with infantile spasms in the US are often given single vaccinations instead of combo ones, as it’s easier for them to handle and because vaccinations lower the threshold for seizures. They don’t cause seizures initially, per say (although many IS parents think they might), but they can definitely lower the threshold for kids who are already prone to having seizures and those with unknown or underlying seizure disorders. Vivian’s first infantile spasm cluster appeared 6 days after her 6-week vaccinations, so I will always wonder if that is related to her IS somehow.

She got the last of her 3-month injections the Monday after my last post. I think any time we go to get her vaccinations given, I will always be afraid that the spasms will come back. It is nerve-wracking. But so far so good. I haven’t noticed any of the strong startle movements she was displaying in a while, either. Knock on wood there.

The week following this shot, Vivian’s appetite went into a downward spiral, and so did her sleeping habits.  It was pretty stressful for all three of us, and in the back of our minds we are always thinking about her intake, so to see her go from averaging about 600-650mls a day back down to 475ml a day for that week was really frustrating.

We decided to up her teat/nipple flow to a level 3 teat (6 months+) in the hopes that it would help us get more fluid into her throughout the day. So far that has really helped, but I know this definitely means the end of breastfeeding. I am still expressing for her, though.

She is able to keep up with this stronger flow with no issues and her averages are soaring up to about 700-725mls now on good days. If we can keep at this, there’s a good chance she will have a nice weight gain next time we head back into the pediatrician’s office.

Merry Christmas Outtake

I realized I didn’t really say much about her last appointment (first week of January) – it was mostly just to check in with Vivian’s weight. She had gained about 450g (not heaps at all), but she grew like 3 or 4 centimeters between appointments, so that was exciting. The nurse didn’t want to record it on her chart because her height was 66.6cm, which had both Ben and me cracking up in the exam room. She changed it to 66.7cm. Superstitions!

The pediatrician didn’t seem concerned about the movements I had been seeing (that aren’t happening now), but our ACC case worker wanted her to give us a referral to see Vivian’s neurologist again. I need to check with the case worker on where this is at because I’ve not received any letter about it.

She also recommended we up Vivian’s omeprazole (Losec) dosage to 20mg a day instead of 15mg, because Vivian was having some episodes where she’d wake up inconsolable at night and we thought it could be related to her reflux. We have dropped Vivian’s Gaviscon way back from 4-6 doses a day to maybe 1 a day if needed, so the omeprazole does seem to be working as it should.

Holiday Fun

Overall she’s doing really well. Physically, she has pretty good muscle tone in both her arms and legs. A bit high tone in her arms at times. Her head is still not growing correctly though, which does make us sad to know, but we will have to just deal with it as we have to with everything else. It still sucks, though. Acquired microcephaly, it’s called. Where the brain has a severe injury or trauma, which causes it to grow incorrectly or not much, which in turn causes the skull to not grow either.

We also asked about Vivian’s need for lactulose, which helps her have bowel movements. During the steroid wean, Vivian’s intake was so minimal and we were still having to give her 4-6 doses of infant Gaviscon daily, which meant that she got constipated really easily and was having horribly painful, hard bowel movements. We didn’t want to risk her starting to hold on to her poos instead of getting them out, so we started adding lactulose to her daily medication regime.

I’ve read some mixed stories about lactulose. Doctors seem to push it here as something that has no negative side effects in the long run. Parents of kids who have been on it long-term tell a different story, of kids whose bowels don’t learn to empty on their own, who become dependent on this. Of kids who have to move on to stronger medications because lactulose stops working for them. I know with kids that have lower muscle tone, constipation can really be a struggle, and I’m hoping that doesn’t happen down the road for us.

The pediatrician recommended we keep her on it daily,  since the last thing we want to do is make it painful to poop. But because Vivian’s intake is up again, and her need for Gaviscon has been so reduced, we are trialing her without lactulose and so far she’s been able to manage without too much discomfort. I think we just went 2.5 days without a poo (pretty normal for breastfed babies), and it was a bit of a push to get it out, but nothing a normal baby wouldn’t do.

Bahumbug

“Stop talking about my poo, Mom!”

100 Days

Today marks 100 days since Vivian last had a cluster of spasms. This is pretty awesome, and we’re quietly happy that she’s not having those types of seizures any more.

We have come so very far in all sorts of ways. She was 7 months old yesterday as well. 7 months of the crazy roller coaster called life for our little Vivian.

I am wary of saying that she’s now 100 days seizure free, because some mornings she will still have a few suspicious movements while she is lying on her back on the changing table.

I’ve mentioned them a couple of times; they look like very strong startles, where her arms snap back on her changing mat and her feed slam down, sometimes hard enough to make a noise. Her head turns to the side and her eyes go up in her head. It doesn’t last longer than a second, so if you blink or if you’re away getting her next outfit, you’ll miss it. But if you watch long enough you’ll usually see another one. Of course, I have tried recording these on my phone, but they have a way of stopping as soon as I press record.

If you didn’t know what you were looking for, they really would look like just a strong startle, but she’s too old to be having such a strong moro reflex (although kids with cerebral palsy do often have a tendency to keep their moro reflex for a very long time, and I suspect Vivian may go on to be diagnosed with some form of CP down the track), and there isn’t anything to trigger them from what I can tell, like there would be with the moro reflex.

We saw Vivian’s neonatal consultant (pediatrician) this week and when we mentioned these to her she said that Vivian will always be prone to seizures, and if at any point they become more pronounced/frequent/uncomfortable for Vivian, then we should definitely bring her in to the Child Acute Assessment Unit.

At what point do we make that call though? Are these suspicious movements impacting on her development? Are they classed as infantile spasms still? So many questions that we don’t seem to get answers for that we need a neurologist to answer. It feels like another way of saying “if the seizures aren’t making Vivian uncomfortable, we’re not going to treat her for them,” like they said when Vivian first starting having the IS.

Our ACC case worker wants the pediatrician to refer us on to our neurologist so she can meet with him and get more information about Vivian’s case. I am going to try to push for answers to these questions from him when we next see him.

In other news, this week was pretty exciting for Vivian, in terms of new things and new experiences.

We picked up a third-hand Steelcraft reversible stroller/pram from a local buy/sell Facebook page. It was only $50, and in great condition, so that is pretty nifty. It can have the seat facing you, or away, which is the main feature we wanted in a pram, because we feel Vivian being able to see us while we go for walks and hear us because she is facing us will be better for her development. We’re still using a capsule & snap-n-go system at the moment, so this is more for when Vivian gets too big for that. Ben took her out for a walk the day before yesterday and she didn’t really utter a peep while they were out. The last time we tried this, she screamed the whole way around the block.

We also got her a new pair of sunglasses that are a bit shorter on her face, so they don’t dig into her cheeks as much. She played in the lounge with the curtains wide open on a very sunny day and didn’t freak out. It was glorious. You have no idea how amazing it was. She spent most of the time playing with the sunglasses, lol.

On a side note, I need to adjust the straps on both pairs though, because Vivian’s head has not really grown at all and they’re a bit too loose on the smallest size, so they fall down. She definitely has microcephaly, which means her brain & skull aren’t growing like they should, as a result of her birth injury.

We bought her a new play gym for Christmas that has a higher contrast between colors than her first one, and a better system for hanging toys on that will allow us to swap out the toys easily. She absolutely adores it and will happily bash all the toys on it to oblivion. She also likes to feel the fabric when she’s on her tummy and spends a good ten minutes scratching it with her nails. It even has a cause & effect toy on it that she’s cottoned on to- a rattle that has an LED light in it that flashes when you shake it hard enough. She likes to kick the arm of the play gym it hangs from.

We also got some really awesome dribble bibs from a crafty momma, made of really snazzy fabric and are nice and thick to soak up all the drool. And a new bouncer from another momma in my due date Facebook group, after ours was *coughBencough* donated mistakenly. I can’t wait to put her in the bibs; made of really snazzy fabric and are nice and thick to soak up all the drool. Vivian used to hate the old bouncer but now that she is more active, she really loves it and was going crazy in it last night. I’ll have to try to get her on video because it’s so adorable. She does this crazy kick to get bouncing really hard.

We also purchased a Baby Shusher from a local baby business, Sleepytot New Zealand. Holy crap this thing is AMAZING. I might have to give it a write up in a separate post, because it’s that awesome. It was really the key to having a very successful outing, which was the biggest win of this week.

Vivian and I had an afternoon play date/meet up with a bunch of mums from my due date group. It’s only the second time I’ve been able to meet up with my due date group, and it was the first time I met a lot of the ladies in person. It was very cool getting to put faces with names and seeing all the babies that I’ve grown to know through pictures and stories.

Vivian only had a few minor hiccups while we were there. She spent most of the time very quietly listening to all the talk (there were about ten mums and their babies present, so it was pretty loud). We spent a lot of time outside beneath a shady apricot tree, and as long as the sun wasn’t directly in her eyes, she was great! I got her to take half a bottle and managed to get her off to sleep for about 20 minutes. We were gone for about 3 hours, which meant Ben could take a nice nap before working last night. It has done heaps in terms of building confidence to take her out by myself without Ben in the car and shows how far she’s coming along with feeding and not freaking out as badly in new situations. Hurray!

Summer Smiles

I also spied her grab a toe for the first time last night. Even if it was for just a fleeting second, I’m sure she’s going to do it again!

What’s new in your world?

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.

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?

Previous Older Entries

Follow now & gwen on WordPress.com
Follow

Get every new post delivered to your Inbox.

Join 591 other followers

%d bloggers like this: