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.


“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:


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.

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