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.

 

Next Steps

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

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

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

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

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

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

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

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

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

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

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

Watching it all go by

 

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

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

Staying hopeful

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

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

Side sleeping

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

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

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

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

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

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

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

 

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

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

How do they know?

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

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

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

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

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

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

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

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

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

PlayingWithCaptainCalamari

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

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

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

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