One year of Zyma!

It’s been two whole weeks (yesterday) since my daughter turned 1 and I’m only just getting around to posting about it. Where do other people with small children find the time to do anything? I thought I would have at least a little time to myself now she’s in nursery and with Jan still being off work until January, but between work (I do 20 hours a week), appointments and preparing for Christmas I feel like I’ve had even less time than when I was in sole charge of the baby all day long.

Since I wrote my last post she stopped rolling for a while but now she’s back to it. However, she will only roll from her front to her back. She then immediately sits up – a skill she learned at the beginning of December. One day after her 12-month spina bifida check up. She had been practising for about a month and was so close but only actually managed it the following day. It would have been very convenient if she had managed to demonstrate for the specialists but that’s okay.

Her favourite thing is still being out and about. Not long after I wrote my nine month blog post she learned to wave and she’ll wave and wave at people all day long. She gets so excited when they wave back and is all beaming smiles. Everyone comments on her smile and how happy and social she is. I really hope she never loses that!

Waving at minipig piglets during a trip to the zoo with Grandma in November

The day before her birthday she learned to point, first at the string lights on the bookcase, then at ceiling lights and street lamps. She loves all the shiny Christmas decorations and lights. She also got a book about dogs for her birthday and was able to point out the dogs for us. Now she points to dogs and cats outside. Plus – more embarrassingly – people. We’re working on learning that it’s rude to point and she should stick to waving 😉

We had her one year check up at the paediatrician, and cognitively she’s right on track. She understands loads, uncovers objects, points, claps and waves, reaches out her arms when she wants to be picked up and knows the names of her two favourite stuffed toys (Oscar the octopus and Kai the okapi). Physically, however, she is behind – which is to be expected with her condition. At her last appointment in Zurich, one of her specialists told us that even those children with spina bifida who can walk perfectly without any aids take their first steps late, usually at around 2 years old. She still lacks muscle tone in her lower back and glutes, which is part of the reason she still hates being on her tummy and will immediately roll over (and then sit up). It’s hard to lift your head when your back muscles are weak! Although she kicks both legs – and will even kick on command – she doesn’t make even the slightest attempt at crawling. It does make some things easier – we’ve barely had to baby proof yet and there was no need to worry about the Christmas tree since she has no way of getting to it 😉 – it’s bitter sweet seeing babies much younger than her already crawling, pulling to stand and even cruising along furniture. Our only hope is that she doesn’t get too frustrated when she sees that the other children in the babies group are gradually becoming more mobile while she’s left behind, stuck sitting wherever she was put. She still has physiotherapy and we’re currently particularly working on transitions – now that she can sit up by herself she has finally started going from sitting down to her side to pick up a toy and will also stretch much further forward than she used to when trying to reach something. What we would really like is for her to go on her tummy on purpose to get to something, but that currently seems to be a way off. She will whine and point for half an hour rather than getting herself into the dreaded tummy position. We use dry wipes and tap water to clean her for nappy changes and the one time she is willing to go on her tummy is if I place her face down over my knees and let her play with the water in the bowl. I can’t let her do it for too long though otherwise we end up with a puddle on the living room floor! She’s started really to really enjoy splashing in the bath as well. It looks like we’ve got a little water baby on our hands!

Admiring the view of Basel

Her last spina bifida appointment was mostly good. It’s still too early to say whether she will stand and walk and we’ve been recommended a new type of therapy that may help her achieve more mobility. Coincidentally, at her next physio appointment after the day in Zurich her physiotherapist mentioned the same kind of therapy and even did the research for us to find someone in Basel that does it! We had one trial appointment before Christmas and will be setting up some more soon. It will be a lot of work though as we will have to do the exercises with her at home 3 times a day. In the end, that will mostly fall to me since Jan is back at work on Monday and will be in Zurich three days a week, which means leaving the house by 7 a.m. and not getting home until Zyma is in bed. Her MRI in October showed that the top to ventricles in her brain are fine. However, the third ventricle is very slightly enlarged. There is no sign of any pressure in her brain and the fluid seems to still be flowing normally, but they wanted her to go for an extra MRI in January just to be safe. As they said it would be negligent to just say “well, she’s obviously fine so we’ll leave it until her next regular MRI in a year’s time!”. She also has to go to an eye doctor because that third ventricle connects to the optic nerve, so we have to get the back of her eyes looked at to make sure there#s nothing going on there. The bladder medication seems to be working and they were pleased at how well things are going with catheterisation. We’re now giving three doses of her medicine instead of two so it’s split more evenly across the day and doesn’t wear off by early afternoon. When she’s at nursery, we’ve arranged for carers to go in at around 10:30 a.m. and catheterise her there and so far it’s working really well. Zyma has absolutely no problem with it.

Birthday cake!

We’re so proud of how well she’s taken to nursery! Of course, it took less than two weeks for the germs to get her and she came down with a cold the week of her birthday. Luckily we didn’t really have anything planned anyway since our families live so far away and had all been to visit in October and November. She spent the morning of her birthday mostly sleeping but perked up a bit in the afternoon to open her presents and try a little bit of cake. I used this recipe for carrot cake muffins, but made it as a small cake and adapted the recipe slightly. My version left out the raisins and I added 50g of sweet potato (steamed and mashed) plus 30g of apple/pear puree for a little sweetness. When I did a trial run (in muffin form) they tasted too savoury so I experimented with adding fruit and sweet potato until I got something a little sweeter but still healthy enough for a baby. For the topping I used cream cheese with orange zest and also squeezed in some of the juice from the orange to give it a little flavour. Zyma tried about three bits of the cake then had a large spoonful of the “frosting” – she loves cream cheese!

She is still mainly on milk for nutrition but her eating is gradually getting better. While she had a cold she ate almost no solids, and a lot of what she did manage ended up being coughed back up. We’re back on track now though and she will usually at least try something at every meal. She even ate 10 spoonfuls of soup at nursery once, which is a lot for her! She loves soup of all kinds, scrambled eggs (I put ricotta in for added nutrition and she gets really excited to eat them!), mandarins, bread and croissants. She’s also a big fan of milk foam from the top of coffee. A few cafes offer a “babyccino”, which is hot milk with foam on top, and she will happily eat all the foam off one of them and sometimes even have some of the actual milk as well.

There’s really nothing left to say except that I can’t believe I’ve been a mother for an entire year (plus two weeks). It has been a joy and a privilege to accompany Zyma on her first trip around the sun. I’m so proud of the cheerful and determined girl she’s turning into and I’m so excited to watch her continue to grow. My only wish is that she stays exactly this happy and we can help her overcome the challenges spina bifida throws her way.

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Spina bifida awareness month

I ink found out recently that October is Spina Bifida Awareness Month so before it’s over completely I wanted to write a post.

Before Zyma’s diagnosis I didn’t know much about spina bifida. My brother-in-law actually has it as well but it had never come up as a topic of conversation. He walks slowly and with a bit of a strange gait but he walks. I also had a cousin with spina bifida who died at 3 weeks old (before I was born – actually while my mum was pregnant with me). Here was a more severe case and I had always been told that if she had lived she would have been in a wheelchair. So the extent of my knowledge was that part of the back is open (spina bifida actually means “split spine”) and it affects mobility.

Six-day-old Zyma waiting to go for her first post-birth MRI

When Zyma was diagnosed we had various meetings with experts who explained all the various ways she could be impacted. Spina bifida is known as a snowflake condition because no two people have the exact same combination of issues even if their lesion (opening) is in the same place. It’s a neurological condition that potentially affects all the nerves below the lesion. In Zyma’s case that’s around L4, so as well as the legs that means the bladder and bowels. Digestion can be slowed and the kidneys may be affected. Without the operation before birth Zyma’s legs would have been entirely paralysed and she would have needed a wheelchair. Her hips wouldn’t have been affected though, so she would have been able to sit independently.

The other thing I didn’t know about spina bifida is that the spinal cord can actually be stuck at the bottom, known as tethering. This causes the brain to also be pulled down towards the neck, which blocks the ventricles and stops the brain fluid from draining as it should. This is one of the main causes of hydrocephalus, or water on the brain. Babies who are born with this have to have a shunt – or drainage tube – fitted within a few days of birth. The other end generally drains into the abdomen. After Z’s diagnosis I found out my brother-in-law has a shunt and it had to be renewed at some point because it wasn’t long enough. That’s not supposed to happen – generally they put in a pretty long tube to start with. The usual reason a shunt has to be renewed is because it gets blocked. Luckily the surgeons were able to untether Zyma’s spinal cord during the foetal operation and so far she doesn’t need a shunt. We were told that if she doesn’t need one by a year old she probably won’t need one at all. By 2 years she almost definitely won’t. After the surgery the ventricles in her brain were within normal range throughout the rest of the pregnancy and still looked exactly the same when she was a newborn. They’ve since widened slightly but were stable between the 3 month and 6 month appointments so as long as they stay that way all is good. She recently had an MRI, which is technically part of her 1 year checkup so we won’t actually see the neurosurgeon and get the results until then – unless something looks seriously wrong and she needs urgent surgery. Since it’s been over two weeks and we haven’t heard anything I’m hoping it’s safe to assume that isn’t the case.

Currently the only part of Zyma we know is affected is her bladder. She has neurogenic bladder, meaning the nerves and muscles that control the bladder don’t work together well. In her case, the bladder is overactive. The muscles constantly contract when only a small amount of urine is present. Over time this could cause urine to flow back into the kidneys, so she’s now on medicine to keep her bladder calm and we catheterise her four to five times a day. later, she’ll be able to do it herself.

So far she’s taken everything in her stride with only minimal fuss/crying – all the appointments and tests, the medication and catheter, physiotherapy. She’s a smiley, friendly baby who charms everyone she meets.My little superstar was absolutely worth everything we went through to have her.

Nine months of Zyma

I say this every time, but I can’t believe I’m typing this. How has it been three months since my last Zyma update? It has flown by! I’m also very glad I decided to switch to quarterly updates because I would not have had time to post every month!

So… last time I said she had three bottom teeth and I was sure I saw signs of a third one on its way. That third bottom tooth never did manifest, but shortly before turning 7 months she started chewing her hands even more than usual and biting while feeding again (even though she had learned fairly quickly that biting means no milk). Everything I’ve read claims that teething-related fussiness for an individual tooth lasts about 8 days – 5 before the tooth erupts through the gum and then another 3. Well, it was eleven days of fussing, biting and complaining before I finally felt a top tooth poking through the gum. That tooth then turned out to be four, all at the top, so it was about a month and a half of an extremely whiny, bitey, fussy baby before the fourth one was through enough to stop bothering her. We had a break of about a week but now she’s back to biting me multiple times a day and whining whenever we’re in the flat and I’m not entertaining her, so I’m currently on watch for tooth number 7! (She also has a doctor’s appointment on Monday for her 9 month check up so I’ll find out then whether something other than teeth is bothering her.)

Despite teething woes this season is a lot of fun. While I miss newborn snuggles she’s so much more interactive now and I’m really enjoying seeing her personality emerge. Over the past few months she’s gone from the occasional giggle to full on laughs and she finds the most random things funny. For a while ripping paper was absolutely hilarious – she was so amused by me opening my birthday presents that I ended up tearing the wrapping paper into strips for her entertainment. I’m always trying to find new things to make her laugh because it’s such a joyful sound. She loves bubbles and seems to be starting to enjoy going on the baby swings at playgrounds (although I think it’s more the coming towards whoever’s pushing her and trying to grab their hair/face she likes than the swing itself). Her current favourite books are “Owl Babies” and “But Not the Hippopotamus”. Back when she was six months I wrote that she loved “We’re Going on a Bear Hunt” but she doesn’t seem to find that one as amusing now.

For a while she was doing really well with eating and tried lots of different foods – purées only, we tried doing some baby led weaning but she absolutely refuses to put any “real” food in her mouth, except carrot puffs. Her favourites seem to be anything with pumpkin or sweet potato When we first offered plain yoghurt after her six month appointment she ate a little bit then she went off it completely for over a month – I had to mix it into her pumpkin. Last week, out of the blue, she started taking it again but only with puréed fruit mixed in. She will eat neither the yoghurt nor the fruit on its own! When the top four teeth started coming in she refused to eat any solids at all for about a week and currently we’re on day 5 of another food refusal. Two days ago she actually cried when I offered her pumpkin and potato, which she usually loves. I was hoping to stop breastfeeding after 1 year but unless things change quickly it’s looking like she’s still going to need breast milk for nutrition in 3 months time. Even on a good day she will only eat around 5-6 of her baby spoonfuls, and only if I time it exactly right between milk feeds in the afternoon. On a truly amazing day she will eat 1-2 spoons of breakfast but most days she refuses anything that isn’t breast milk before noon.

On 11th August, 5 days before she turned 8 months, she finally managed to roll from her back to her front – then proceeded to complain until I rescued her because she still hates tummy time and she couldn’t roll the other way. Then, on 25th August, she actually managed to roll back the other way after getting herself onto her front. Now if I lie her on her tummy she consistently manages to roll over onto her back, but going the other way she doesn’t always make it further than her side. Currently she only rolls in one direction and then back the way she came – meaning from her back she’ll roll towards her right side onto her stomach and then she’ll go to the right again to roll back – so she can’t use rolling to get to places yet, but I’m sure it will come soon enough. And every time she “rescues” herself from being on her tummy she looks so proud.

She is also sitting really well now. She still falls backwards when she gets distracted but she can play with a toy using both hands and still stay relatively stable.

Sitting – the cushion is there to provide a soft landing but it’s not supporting her in any way

She likes being out and about and watching other children – I finally managed to find a playgroup for babies her age (I actually found it ages ago but only recently realised people who aren’t members of the organisation that runs it can go and just pay a small fee per session) and we’ve been three times so far. She particularly seems to like looking at babies who are smaller than her. She really enjoys attention, but on her terms. She would love me to entertain her all day long but when people smile at her while we’re out she usually just glares at them. Recently one of the assistants at the local shop finally managed to get Zyma to smile for her and it made her day! Occasionally she will decide someone is worthy of a smile though, and her face just lights up. Usually the people she wants to smile at her are the ones who are ignoring her,s o she’ll sit there smiling away and making little noises until they notice her. When we’re indoors for too long she will eventually start whining so every afternoon I stick her in her pushchair and we go for a walk – to one of various nearby parks where I lay a picnic blanket on the ground and she usually has a play on the baby swings, into town where we stop at a café and she gets to play with the sugar packet from my coffee, or just to a supermarket (even food shopping is interesting when you’re a baby!). After a fairly hot summer it’s been mostly rainy recently and it’s cooled down a lot – autumn is definitely in the air – so I’m going to need to get her some little waterproofs so we can continue getting out and about. Obviously her pushchair has a rain cover but she doesn’t like to sit in there the whole time.

I am still tired but Zyma has started having one stretch of 5-6 consecutive hours of sleep most nights. Unfortunately it doesn’t help me much because during those hours I’m tidying up from the day, cooking and eating tea (Jan has been busy at work so on the days he’s in the office he’s mostly not home for food) and pumping so Jan can give her a bottle when she wakes for milk. After that first long stretch of sleep all bets are off – she could go straight back to sleep but be up three more times, refuse to go back to sleep for over an hour then sleep right through until morning, go back to sleep then wake up at 5 a.m. wanting to be up for the day (I refuse to get her out of bed before 6 so the end result is the two of us lying awake, me doing my best to keep her quiet for another hour so Jan can continue to sleep). Hopefully once she’s more interested in solids she’ll finally drop those middle of the night feeds and I’ll actually get an unbroken (if short) night’s sleep again!

At her last spina bifida check up she was put on medicine for her bladder, which means we now have to catheterise five times a day. She seems to be doing well on it and she does a reasonably good job of lying still (we have to administer the meds directly into the bladder via a catheter so she has to lie there for quite while). My current trick is singing either “I Went to the Animal Fair” or the chorus of “Agadoo”. I have no idea why she likes those particular songs but they always seem to calm her down!

These past three months have gone so fast and I’m just in awe of everything this tiny human can suddenly do (although I admit I was starting to wonder whether she would ever catch on with the rolling thing). Four teeth at once has not been the most fun and I can’t deny there are days that I find myself counting down the hours until bedtime, but seeing her little face light up when I walk in the room makes it all worth it and I honestly can’t imagine life without my little sidekick. She is my absolute world and I love her to bits – bitey teeth, scratchy finger nails and all!

November 2021 recap

I’ve been meaning to write this post since February and it’s now almost April so let’s do this shall we… otherwise I’m still going to be banging on about last year in 2023!

After being rehospitalised at the end of October I was back on oral medication to prevent contractions and sent home again on 3 November. This time I was not allowed to work at all. Luckily I was only actually planning on working until the 5th since I had annual leave I still needed to take, so I only got a sick note for a couple of days. I then spent a week at home mostly in bed but also sorting out a few things that needed to be sorted before the birth. I managed to post out both a Christmas card and my cousin’s birthday present to New Zealand… only for them to still not arrive until after Christmas, but that’s another story! I also got together the documents I needed to register the birth. (Jan didn’t sort his part in time though, which has resulted in a right palaver with her surname, but again that’s another story).

On 9 November I went for an ultrasound. Because of the operation, I was supposed to go for one once a week to make sure the placenta was still working and baby was growing properly. I was expecting it to be routine, and almost everything looked great but the doctor noticed my amniotic fluid was low. I then had an appointment with another doctor (the first was just doing the ultrasound), who did a swab to test for leaking amniotic fluid sent me for a CTG (see my last monthly recap if you don’t know what that is). The CTG looked good and the swab was negative. I had also asked the doctor about a vaccination for whooping cough, which I had been recommended to get while I was in hospital for the operation. He sent the nurse to check whether they had any and they did so I got that as well. Finally I saw yet another doctor – the second one having only been standing in for her while she was on her break! She was fairly clueless about what was going on but decided I should be admitted to the hospital in Zurich. But this time I was sent home to pack and make my own way there instead of being transported in an ambulance so at least I knew they weren’t too worried! The doctor said she would let Zurich know I was coming so home I went… having been at the hospital for about 3 hours by this time! At home I packed then hung around waiting for ages because Jan decided he needed to finish something before driving me to Zurich. We finally arrived at the hospital around 9 p.m. where I first had to go to the Labour and Delivery floor for another CTG, two ultrasounds (a normal and an internal one) and another swab for amniotic fluid. The doctor was convinced it was going to be positive but it was not. After some discussion about whether I should have a booster of the injection for the baby’s lung development they decided to leave it for the time being and admit me to the prenatal ward, where I had been the other two times I was in hospital. Jan had to leave at around 11 p.m. to take the car back and I was finally taken up to the ward around midnight. The next morning the doctor came round and told me the plan… basically we would just wait, constantly monitor the situation and try and get me as far as possible. As long as baby was still doing well I would be allowed to continue the pregnancy but I definitely wouldn’t be going home. That was pretty much as I had expected and I agreed that hospital was the best place for me to be, so that’s where I stayed for the rest of November (and part of December, but we’re not there yet). The surgeon who was in charge of my case and would be doing my C-section also came to see me and explained her theory of what was going on… basically she thought there was a tiny hole at the site of the internal incision and amniotic fluid was leaking from there into my abdomen. The two swabs for amniotic fluid had come back negative because my waters hadn’t broken as such, and so there was no risk of infection and it was deemed safe for me to stay pregnant.

The view from my hospital room on 26 November 2021

For the rest of November I did crossword puzzles, read, walked around the ward and chatted to my various room mates. One person had already been in there for about 4 weeks and stayed there with me until 1 December, when she finally bled one too many times and was taken to have her daughter. Another person was only there for 5 days before giving birth to her daughter, whose original due date was the exact dame as Zyma’s – 6 January! We’re still in touch via the occasional WhatsApp message. Various other women came and went, some just for one night, some for a little longer. And for a few days I was even completely on my own… in a room meant for 3! Every day I had a CTG in the morning and another in the evening, every three days I had an ultrasound, and at some point I ended up back on IV meds to prevent contractions. It was boring and sometimes lonely (Jan couldn’t visit that often since he had to work) but every single day that I was able to stay pregnant was an absolute gift. I knew the longer baby stayed in the better things would be for her, and since she would already have spina bifida to deal with I really didn’t want her to end up with any additional issues from being born prematurely. So I embraced the boredom and kept myself occupied as best I could. And so, eventually, November passed and I made it to the month in which. no matter what, I would be having a baby!
December 2021 recap coming soon. Well, I say soon, but clearly I can’t promise anything…

Two months of Zyma

I think if I write one of these every month it will be a bit much – especially since I don’t want this to turn into a “mummy blog”, so after the next one we’ll cut it down to quarterly. But this month we’re doing it. So.

It’s now been two months in my new reality. The one where I’m constantly covered in breast milk – either in its pure form or after it’s already spent some time in the baby. We have about a dozen muslins/burp cloths but she has a real talent for juuust missing them. I knew we would be washing a lot of baby clothes but never expected quite so many of my own to be in the mix! I also had to buy some tops after realising just how few items of clothing I own that are suitable for breastfeeding!

In all honesty month two has been exhausting – and we have a relatively easy baby! Since about 5 weeks all she has seemed to want to do is eat and since she gets most of her nourishment directly from me you can imagine what that means. Choosing the right time to shower is a fine balancing act! All the feeding is paying off though… Zyma has passed the 3.5 kg mark (that’s 7 lb 11 oz). She’s still a tiny little thing but she’s following her own curve perfectly.

First time breastfeeding in public! (Photo by my mother)

Apart from being a hungry hungry hippo… did you know babies can forget how to pooh? Or rather at first they just let it flow then they realise they actually need to do something but some babies don’t quite get it. As my midwife explained all women should engage their pelvic floor much before something that causes abdominal pressure – like sneezing or lifting something heavy (hands up who actually does though. Lol.) Babies apparently do this automatically, including while trying to push out pooh. Unfortunately that means they’re straining against a closed door, so to speak. The result is that poohing (or passing gas) involves a lot of straining coupled with straight up wailing. The internet says crying provides the pressure to get the pooh out and the babies aren’t actually in pain but she certainly sounds like she’s in pain and her poor little face goes bright red! She’s slowly starting to have more bowel movements without straining than with so I’m hoping we’re turning a corner. And of course in our case it’s good that she’s straining to pooh since that means she can feel that she has to go and the spina bifida hopefully hasn’t affected her bowel function. I just wish there was something I could do to help her!

Holding daddy’s hand

But despite the difficulties please don’t think I’m complaining. I’m still absolutely in love with my baby girl and can’t believe she’s mine. Sometimes when she’s sleeping on me I’ll literally just stare at her in awe of her cuteness. As for Zyma, she loves mama milk and baths, hates nappy changes, getting washed with a flannel (full baths are only once a week) and being put down so mammy can eat with two hands. She’s started following objects with her eyes and head, stares at her black and white contrast books and always behaves well for doctors – even when she has to have an ultrasound. Her hip dysplasia is already looking much better and the doctor is really pleased with her, but the harness is staying on for a while longer just to be certain. I can’t wait to see what the next month will bring! We’re hoping for some real smiles…

September 2021 recap

The midwife is coming earlier than usual today – at 11:30 a.m. – so after giving the baby her 7 o’clock feed and putting her back to bed I actually got up and had my shower. Her next feed will be a bottle from daddy together with her medication (caffeine citrate if you’re interested) so I’m using the fee time to catch up a bit on blog posts. My mam and brother are also here right now but currently still sleeping.

So, September 2021. I actually had the first two weeks of the month of work for my summer holiday (my colleagues were off in July and August so September was the only time available to me). We had initially had vague plans to potentially go to Germany, but once we received Zyma’s diagnosis and it fairly quickly became clear that we would be going for the operation Jan decided to save his time off for while I was in hospital, meaning I was off by myself. The weather was also fairly miserable so I didn’t end up doing much. However, I decided it would be a great time to get a head start on stitching Christmas cards since I had no idea when or how I would be able to do them after the operation. As it turned out that was a very good idea given I ended up in hospital for a second time in October and then again from 9 November until Zyma was born!

On 11 September I had my second COVID vaccination. Jan took me to the vaccination centre then dropped me off back at home and went to choir practice. Later that day I had a sore arm and by bedtime I had a headache and was aching all over. The next day Jan had choir practice again and I spent most of my time in bed, reading and sleeping. I still had achey muscles and a headache off and on (it would go away after a nap then come back) but thankfully no temperature – I kept monitoring it since that was the one side effect that could have been harmful for baby. By day 2 I was fine, which was good because I was back at work then.

The weekend before my operation we decided to go somewhere since it would be the last time for a while. On the Saturday (which was sunny for a change!) Jan slept for basically the entire day so we ended up going to La Neuveville on the Sunday when it was pouring down again. It’s still a cute town even in the rain though.

Then it was operation time. I went into hospital on Friday, 24 September. Patients having the foetal surgery for spina bifida always go into hospital on a Friday and have the operation on a Monday. Friday was a full day. I had a COVID test – the first of four! They took blood, did an ECG and I was given the first of two corticosteroid shots to help the baby’s lungs mature in case something happened and she ended up having to be born early. I also had an ultrasound and the doctor explained to us exactly how both the operation and the subsequent C-section would work. Later an anaesthetist came by and I also met with someone from the neonatal unit who went through exactly what to expect at every stage, from if the baby needed to be taken out during the operation at 25 weeks and 4 days right up to the day of the planned C-section at 37 weeks exactly. It was a lot of information! The coordinator in the university hospital side also came by to introduce herself – we had already met her counterpart on the children’s hospital side when we came for the initial information meeting.

Sunday was the second lung maturity shot and an IV drip with magnesium for neuroprotection of the foetus – again in case she had to be taken out early. Then on the Monday it was operation time. There were two operations that day and I was going first so I was taken down at about 6 a.m. Jan met me downstairs on the labour and delivery ward where I had a CTG (cardiotocography – monitoring of the foetal heart tones, baby’s movements and any contractions – I had a lot of those done by the end of my pregnancy!) and was prepared for the move to the operating theatre. Then I had to say goodbye to Jan and it was off for the surgery. Everything went about as well as it possibly could have – as I was apparently informed two hours later when I woke up. I have no memory of that conversation but luckily it was repeated to me again several times ;-). For the next two days I was closely monitored in a high dependency bed. I didn’t get much sleep down there but all the members of staff looking after me were amazing! Then I was taken back up to the normal prenatal ward where I was to stay until two weeks after the operation. Initially I was in a two-bed room which I shared with the other person who had had the same operation on the same day. By that evening the bladder catheter had been removed and I was encouraged to stand up, then later of course had to walk to the toilet (the nurses helped me get up and lie back down until I felt able to do it myself!). And then it was already October so more on my recovery next time.

This has taken a while to write so it’s about time I got back to my family. Hopefully I’ll get to my next few monthly recaps soon, then finally be able to write the yearly one for 2021!

August 2021 recap

Hello! Baby girl has gone to the hospital* with her daddy today so I’m taking advantage of the free time to sort out some things – including blog posts. (*Nothing to worry about. She has hip dysplasia – probably unrelated to her spina bifida – and today the doctors are doing an ultrasound and checking whether the harness they gave her is doing its job. If the harness works she won’t have to go into hospital for a few weeks for a different treatment so keep your fingers crossed!).

You’re probably wondering why I’m even bothering to recap August now considering how much time has passed. I like to have these posts to look back on so I wanted to write one before I forget everything entirely!

Last year, everything we did in the month of August ended up being slightly overshadowed by baby’s diagnosis. We found out she had spina bifida at my anatomy scan on 10 August – three days before my birthday. Happy birthday to me, right? We did still celebrate with a meal at a restaurant round the corner from us that we’ve been meaning to try since we moved to Basel. It was very nice. The staff were wonderful, replacing several things on the set menu so they were safe for pregnancy. I also got my first COVID vaccination the day after my birthday. At that time you needed a doctor’s certificate to get it during pregnancy and every single doctor I spoke to had highly recommended getting it done so I did. My only side effect that time was a sore arm that lasted for 3 days!

During the weeks following the diagnosis we had a lot of appointments. First I went back to the hospital in Basel for an amniocentesis (for those who don’t know they use a long needle to remove amniotic fluid from your uterus) to make sure there wasn’t any genetic reason for the spina bifida. As it turned out there was not. I then had another ultrasound to try and narrow down where exactly the defect was and we met with a neurologist from the children’s hospital in Basel. At the initial ultrasound where the spina bifida was discovered we had been informed about the option of open fetal surgery – in other words and operation to repair the defect before birth. It turns out Zurich is the European leader for this operation so we went there to find out more information. First I had to have another, extremely detailed, ultrasound then I had an MRI. The next day we went back to Zurich and met with the head surgeon from the spina bifida team, who by that time had seen the results of the ultrasound and MRI. He took a lot of time to explain everything to us and, as you obviously know by now, we decided to take the option of the fetal operation.

When we weren’t running round to appointments we managed to fit in a few day trips in August. Jan drove me to the vaccination centre for my COVID vaccination so since we had a car anyway we decided to go somewhere. We chose Altdorf, capital of the canton of Uri and best known as the place where, according to legend, William Tell shot an apple off his son’s head. I forgot to take my camera so I don’t have any photos.

Earlier in the month we went to Bremgarten, which is in Aargau. It’s a beautiful medieval town and for once the sun actually came out (a rarity in summer 2021!) so we had a really nice walk around the town and along the river. On the way home we stopped in Küssnacht where we played a round of mini golf – which I amazingly won – and then had dinner at a restaurant by the lake.

I also cross stitched some cards in August for September birthdays. My brother’s and my godson’s.

I read a grand total of four books in August – not really my best month. One of them was long though. You can see which ones they were here.

Apart from that I can’t actually remember what I did so I’ll leave this here since I still have some other things to sort out.

Hello baby!

I have a few minutes while waiting for the midwife so I thought I would quickly post.

Jan and I have a daughter! Born 16 December 2021 via planned c-section. Despite being hospitalised on 9th November with too little amniotic fluid I actually made it to 37 weeks. She was on oxygen after birth but that was removed fairly quickly and now she’s doing really well other than some problems maintaining her temperature. Yesterday she was transferred to the children’s hospital and today is the start of a stressful time for her with lots of tests to find out how the spina bifida will affect her. We are completely in love with her and couldn’t be happier.

For blogging purposes her name shall be Zyma (Ukrainian for winter).

Back in hospital…

A huge thank you to all those who have been checking in since my operation. I appreciate all your comment. Apologies if I’ve failed to respond to any! This will be a short post since once again I am typing on my phone. The operation went really well – couldn’t have been better. Both an MRI and several ultrasounds have shown leg movement right down to the feet so it looks like we’ve been able to preserve that function and baby should later be able to walk unaided or with minimal aid. My recovery also went well and I was taking brief walks around the ward on day 3. I got to go home after exactly 2 weeks with strict instructions on what I was not allowed to do (basically any housework whatsover!). I then managed a whole two weeks at home before I started noticing contractions. Luckily as it turned out they are “practice” ones (known as Braxton Hicks) so labour down seem to be imminent but because of the fresh incision the doctors wanted to be extra careful so I was admitted back to hospital for observation and IV anti-contraction meds. And that’s is where I am now. Later today I will hopefully find out how they want to proceed. For now I am celebrating the fact that baby and I have made it to exactly 5 weeks since the operation!

Not how I imagined making this announcement…

I don’t even really know how to start with this, so I guess I’ll just say it…

I’m pregnant. Currently almost 24 weeks, which is honestly amazing. I never thought I would make it this far. On Thursday, I’ll have officially reached viability. Babies born at this stage at least have a chance to survive… doctors will try to save them. Such a milestone!

Of course, nothing is ever simple for us. At 18 weeks and 5 days, three days before my birthday, I went for an anatomy scan where we found out that our baby has spina bifida. The one thing that was not even vaguely on my radar. I had been taking high dose folic acid since around 6 weeks and a normal dose for 5 years before that. So you can imagine it was a shock. I had to come back the next day for an amniocentesis, then we spent the next two weeks going to appointments and meeting with specialists. After an MRI followed by a very long discussion with a specialist in Zurich we finally decided on our next step – fetal, or in-utero surgery. So on 24th September I’ll be going into hospital and on the 27th I’ll undergo an operation so that they can repair the defect in our baby’s back before I even give birth, thus preventing even more damage to the nerves during the course of the rest of my pregnancy.

All that to say things will be pretty quiet around here for a while. Even more so than they have been anyway, that is. I will be able to respond to comments while in hospital and will probably visit other people’s blogs but it’s unlikely that I’ll attempt a post from my phone. But hey, at least I’ll have plenty of extra time to read for a couple of weeks!