As Kezzie so rightly pointed out, I owe my readers a blog post… if any of you are actually still out there. I may just be shouting into a vast chamber of nothing (hence the echoey title). If you are a parent of multiple children and actually manage to blog regularly I genuinely salute you. And would like to know your secret please? I can’t even manage it with one relatively undemanding toddler. She’s even slept through a the night a few times… I think it was only two nights in a row before she got a cough (luckily not so bad that she had to stay home from nursery but enough to interrupt her sleep) then went and got four molars one after the other, which messed up her sleep (and eating) all over again. She was also ill with her first stomach bug a couple of weeks ago so we’re currently back to working on her a) sleeping through the night and b) spending the entire night in her own bed!
Anyway… I’m not even really sure what to say now I’m here. I do plan to write an 18 month update on Zyma, but she’s not 18 months until the 16th so that will have to wait a bit. I also have a couple of book review posts to write, but obviously this isn’t that. So I guess it really is just saying hello and outlining my plans. So you can look out for the following coming up: – Two, possibly three, posts with book reviews – 18 months of Zyma (a year and a half. What? How?!) – Autumn walk 2022 (yes, really. And yes I am aware that it’s now meteorological summer!) – Possibly the cards I stitched in the second half of 2022, if I can actually find photos of them.
I’m off work tomorrow and for part of next week so hopefully I’ll have time to get those written while Zyma is at nursery. Yes, I’m still sending her to nursery while I’m off. Evil mam ;-), and Jan is away from Tuesday night until very late Sunday night so I’m actually going to have some time all by myself for a change… provided the next dreaded nursery illness doesn’t strike in the next couple of days. Keep your fingers crossed for me…
I have a few posts I want to write, but here’s a quick one for now. I haven’t done one of these since 2019!
“Recent” is very much relative in this context. Some of these things will be from December. (How are we nearly half way through January?!)
Eating. Lots of soup because it’s one of the few things Zyma will consistently consume a decent amount of!
Drinking. Latte Macchiato so the baby can have the foam from the top. If we go to a cafe that makes “babyccinos” I have hot chocolate or chai latte.
Reading. I took the first week of January off work in case Zyma needed some help getting settled back in to nursery. She ended up doing really well though, meaning I had time to myself and actually managed to read. Right now I’m re-reading Tomorrow, When the War Began by John Marsden. I want to re-read the first six books so I can finally read the final one and finish the series.
Watching. Jan got a whole bunch of Terry Gilliam films for Christmas a few years ago and we finally watched two of them: Time Bandits and Zero Theorem. Both a weird, Zero Theorem slightly less so. We watched Richard Osman’s Festive House of Games over Christmas/New Year but now the normal one is back on I keep forgetting about it! I also made an exception to my no TV for babies rule and let Zyma watch The Snowman at Christmas.
Making/cross stitching. I stitched a few Christmas cards (not as many as in previous years) and most recently I made New Year cards to send the blind children from Post Pals charity (those who aren’t blind got ones I had purchased, I only made the ones that needed to be tactile).
Buying. Clothes for the baby. Not that she necessarily needed more right now, but it was the winter sales… I also bought a couple of books for Erin’s book challenge since I couldn’t manage to fulfil all the categories with ones I already own (despite owning so many!).
Hoping. I can stop breastfeeding soon. I planned to go to one year, but Zyma wasn’t consistently eating enough solids at that point and hadn’t mastered drinking out of any kind of cup. She’s now doing a great job at drink cow’s milk from a beaker with a spout (but will only actually take it with her evening meal) and starting to show a slight interest in water, so if we can get her to eat full meals more consistently I might be able to think about fully weaning at some point.
Wondering. At what point I have to start referring to Z as a toddler rather than a baby? She’ll be 13 months on Monday! (16th January… fun fact: she was born exactly a month before my dad’s 60th birthday). She’s not even close to actually toddling yet, but I’m not sure we can really use that as a benchmark considering we have no guarantee she will ever walk without aids…
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!
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!
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.
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.
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.
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.
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.
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!
It seems almost silly to be writing this post at this point, but I’ve made it this far so for the sake of completeness we might as well do it.
So, December started with lots of early morning activity as my roommate had started bleeding again. After the previous episode she had been told one more bleed and they would be performing her C-section, so that’s exactly what happened. I think he baby was just shy of 34 weeks at that point, so not ideal but not too bad. She came to visit me 2 days later to let me know everything had gone well and her daughter was doing fine, although would be in hospital for a while.
I spent a couple of days alone – in a room meant for 3 and then got two new roommates at once. One was only there for a single night – the next day she hit 37 weeks and went off for her scheduled C-section. The other woman who was from (I think) Somalia was due to have a C-section at 37 weeks on 27th December. She had somehow misunderstood though and kept telling me she was having hers the day after me, on the 17th. She was so upset when the doctor explained that no, that would be far too early, and her baby needed to stay in until the 27th. She had two other young children and she told me they called every night crying because they wanted mama to come home.
My final two weeks leading up to the birth were relatively uneventful. Someone else came in who was also having foetal surgery for spina bifida and I was able to talk to her a bit about what to expect. I saw her again after Zyma was born and she was already up and walking around within a couple of days… and off the IV meds after a week! Of all the others I met who’d had the operation I think she bounced back the fastest.
Finally, 16th December came around. We had actually made it to precisely 37 weeks as planned! I was first on the list for the C-section that morning, so barring emergencies I would be in surgery at 7 a.m.! As it turned out there was an emergency, so Zyma was born at 8:01 a.m. on 16th December 2021. We had been warned before hand that the immediate crying after birth is just a movie cliché, but the very first thing Zyma did was let out a wail just to let me know she was there. Jan stood to watch her being taken out and told me the surgeon immediately tickled her feet to see whether she would react… which she did. Z was then taken away to a side room while I was sewn back up – it took a little longer because they discovered a weak point on the incision from the foetal surgery so they repaired that while they were in there. Unfortunately Zyma couldn’t be brought to me because she was having trouble breathing by herself so Jan went with her to the neonatology unit while I was taken back to the room on the labour and delivery ward and immediately attached to a milk pump. At some point Jan came back and I as taken to see Zyma still in my bed. It was a surreal moment. She was on oxygen so I couldn’t hold her – just put out a finger and stroke her. I couldn’t believe that tiny little human was mine! The bed and I then travelled back up to the ward I had been on previously. The post-natal ward is actually one floor higher but so many babies had been born around that time that people were being put on the pre-natal ward instead! It was nice for me because it meant I was back with the same familiar nurses/midwives who had been looking after me for the previous 5 weeks (plus my other two stays). After the numbness from the epidural wore off I was given a morphine injection for the pain which made me throw up my lunch! Thankfully by the day after the C-section I didn’t need morphine any more, just the oral painkillers they gave me. In the late afternoon Jan came and took me down to the neonatal ward in a wheelchair and I was able to spend a couple of hours with Zyma. I also tried to pump while I was down there. I was encouraged to pump every 2-3 hours during the day and 4 hours overnight. It took a few tries for my milk to come in – I remember being overjoyed when I actually produced enough to suck up into a syringe. We’re literally talking a few millilitres here… meanwhile the woman in the next bed was filling two entire bottles at a time and being told to avoid breastfeeding tea! So Zyma started life on formula that was supplemented with the breast milk I managed to get.
I was discharged 5 days after the C-section and up until the day before it was unclear when Zyma would be moving from the women’s hospital to the children’s hospital… then I got a call on the fourth morning of her life, a place had suddenly become available and they wanted to move her that afternoon. We both went down to see her off then Jan walked over to the children’s hospital and met the transport personnel at the neonatal ward there to make sure he knew where she was and get her settled in. Meanwhile, I went back upstairs for lunch and to pump. In the evening I was given taxi vouchers to go to the children’s hospital and back – it’s only about a 15 minute walk between the two hospitals but I was not up to walking for 15 minutes yet. It was so weird leaving the hospital after being mostly confined to my ward for 5 whole weeks! After visiting with Zyma for a while, I took a taxi back to the women’s hospital while Jan walked around the corner to the family room we had booked and which I moved into the next day after being discharged (again, I was given a taxi voucher to get me there). I was surprisingly emotional leaving the hospital after so long! Probably because I wasn’t actually going home yet and didn’t know when I would be. The building with the family rooms is about a 5 minute walk from the children’s hospital and the next few days were spent going back and forth. The COVID rules at the time were that parents could be present in the neonatal ward 24 hours a day but only both at once for a total of 2 hours (they weren’t literally clock watching though, so we may have snuck in an extra half hour here and there!). I still had to pump regularly (pumps were provided) so Jan was with her then, one day he had to go to Bern to sort out a new passport, he also popped over to the women’s hospital with chocolates as a thank you for the nurses over there and so we made it through. We tended to leave relatively late at night compared to the other parents, but usually we were back in the room by 10 p.m. I was still recovering from the C-section after all (plus prior surgery and 5 weeks in hospital). The lactation consultants came by and told me we were both basically doing everything right but because Zyma was so small her sucking reflex wasn’t strong enough to get anything out yet. She finally managed to get some milk from me before we left though.
We had been told to prepare for a stay of anywhere between 12 and 21 days, but apparently the doctors wanted to try and get through all the testing before Christmas so she actually had her last spina bifida tests on the 23rd, then she had to have a sleep study done overnight because her oxygen levels kept dropping while she slept. The result was that she needed to be out on caffeine. The hip ultrasound that was part of her spina bifida tests had revealed dysplasia, which we at the time thought would have to be treated in hospital for three weeks, but that could just as well be done in Basel. They told us Basel children’s hospital would have space for her from 27 December but if they agreed instead of her being transported from one hospital to another we could take her home and then bring her to the other hospital ourselves. Basel did agree and we were informed on Christmas Eve that she could go home the next day provided her oxygen levels stayed stable. So Jan spent the morning rushing to try and get everything we needed before the shops closed… bottles, formula in case breastfeeding didn’t work, nappies… the last minute things we had expected to still have time for. The next morning the nurses showed us how to prepare her caffeine and give it to her along with a bottle, we ate lunch in the hospital for the last time (until we returned for her first regular spin bifida check up in March), I fed Zyma… breastfeeding actually worked, although it took a while for her to get enough, Jan returned the room key and, finally, in the late afternoon, we were on our way! We didn’t actually arrive home until around 6 p.m. so we didn’t get much of Christmas Day there but at least Zyma was able to spend some of her first Christmas at home!
On the 26th, a friend came by to meet Zyma… her first visitor. I also opened most of the Christmas gifts (we hadn’t bothered the night before) and new baby gifts. Some people had actually sent her both… such a lucky/spoiled baby! Those first two nights are a bit of a blur. I didn’t sleep much, partly because she hadn’t yet learned the difference between day and night but also because I spent half the time checking she was still breathing when she went quiet and the other half wondering whether the noises she was making in her sleep were normal! But even though we’d only had her for a couple of nights it felt so wrong having to give her up again the next day… for what we thought was going to be three weeks. As it turned out, after performing their own ultrasound, the doctors in Basel didn’t think the hip dysplasia was as bad as feared and decided to send her home with a harness to try out. So on the 28th, just as I was getting ready to go to the hospital and take over from Jan, he messaged to say she was allowed home! By the time I’d joined him there, we’d had the discharge consultation with the doctors and I’d got enough milk into her for her to agree to go in the car seat it was already late afternoon, so again we didn’t have much left of the day. But she was home, and this time she would be staying.
The rest of the year was spent mostly at home getting used to being a family of three, although we did venture out for Zyma’s first little trip in the pram. And on New Year’s Eve we were in bed by 11 p.m.! I couldn’t tell you whether I was awake at midnight… I may or may not have been feeding her at that time, but the fireworks had already been going so crazy since about 9 p.m. that it was impossible to tell the difference! It didn’t really matter to us anyway. Sleeping next to the baby we’d waited so long for was the perfect way to see in the New Year!
Six months! I can’t believe I just typed that. It only seems like a few weeks ago that I was publishing my three months post. And suddenly here we are… my baby is half a year old. In the time since my last post we’ve made it through her first little illness… initially we thought it was a UTI, and that was confirmed by the hospital (of course it was a public holiday here in Basel so the paediatrician was closed. With a fever and being under six months the telemedicine hotline recommended taking her to A+E at the children’s hospital). The initial rapid test came back positive and we started her on antibiotics, but the sample was also sent for cultures to find out exactly what the bacteria was, and 4 days later we received a phone call saying they hadn’t found anything. So we don’t know what she actually had… probably a small infection that cleared up by itself. At the exact same time, she started cutting her first tooth, which seemed a little unfair of the universe! And before anyone says it yes I am aware that teething can cause a raised temperature but not 39.6°C! (*Checks Google* That’s 103.28°F). We had already given her paracetamol in the morning, but with her temperature still hovering around 39°C the hospital gave her ibuprofen and that brought it down to below 38. Once the temperature was within normal range she was a lot more lively and even managed a few smiles. This was a Thursday (it was Ascension Day, in case you’re wondering) and by the Saturday she was maintaining a normal temperature without the aid of ibuprofen.
She now has two little bottom teeth and third one on its way through… we’re currently working on not biting mama. If we use the teeth, we don’t get milk!
Last time I said that she had started smiling, but mainly at her mobile rather than at us. Well, it wasn’t long before she had the social smile down and now she never stops. We went out for a little day trip recently and stopped for coffee and cake. Jan walked around the café with her before we ordered and two old ladies were treated to smiles. She’s also learned to laugh (and I’m realising what a terrible mammy I am having failed to write down when she achieved any of these milestones!). The first time I heard her giggle was when I was changing her nappy… I wasn’t sure whether she was just testing a new noise or actually amused, but it was definitely the cutest sound. She then didn’t do it for about a week, then we heard the occasional giggle, now she full on laughs all the time. She finds the most random things funny – and often only once with the same thing not getting any reaction the next time – and it’s almost impossible not to laugh along with her. One thing that almost always makes her smile and giggle is when I read We’re Going on a Bear Hunt. She particularly likes the lines “a swirling, whirling snowstorm” and “thick, oozy mud”. She’s still too impatient for most other books but that one is a hit.
In between laughing she has also learned to whine… what’s that all about?! I thought I had at least until she learned to talk for that! It started at around 4 months and there’s really no other way to describe it. A constant “Aaawhooooo” and “eeehhhhhh” in the whiniest tone of voice imaginable. Usually the whining starts when she’s forced to be on her tummy for more than two minutes at a time. She hasn’t learned to roll over yet so after looking around the room for a while and playing with whatever toy I put in front of her she’ll put her head down and whine, then eventually cry until I rescue her.
One milestone that I can put a date to, because it only happened recently, is sitting. She has looooved sitting up on our laps for a while and just a few weeks ago – on 1st June – she sat by herself for the very first time. She needs her hands to prop her up (apparently it’s called tripoding) but she can stay in that position for at least a minute without help… at least until she decides she needs one of her hands for something else and promptly topples over! I try not to let her be in that position for too long though.
At just over three months she had her first spina bifida checkup and she did so well. It was a long day for everyone, with the first appointment at 8:30 a.m. meaning we had to be on the road by 6 a.m. but she was amazing. We made it to within ten minutes of the hospital before she started to cry. I was in the back with her and managed to keep her mostly calm until we had arrived and she could have milk, and she was perfect for most of the tests. She did cry during the kidney ultrasound and when one of the doctors wanted to see her on her tummy (the dreaded tummy time coupled with tiredness – not a great combination!) but other than that she did great. The results were also mostly positive, and everyone was particularly pleased with how well she moves her legs. We’ve now started physiotherapy but more just to set things in motion than to address any specific problems. We did start intermittent catheterisation because one of the tests showed a couple of issues there – basically her bladder starts to contract before it’s actually full which could eventually cause urine to reflux back into the kidneys, and she also doesn’t empty her bladder completely. If things don’t improve she will eventually have to start on medication that would completely paralyse the bladder, meaning it wouldn’t contract at all, even when full, and she would no longer be able to urinate by herself, so the doctor wanted us to learn how to catheterise her now so it will already be routine if she does end up needing medication. Bladder problems are common with spina bifida because among the affected nerves are those that control the bladder, but we were obviously hoping she would have escaped. It was relatively unlikely though given the level of her defect. At first we had carers coming in to help us with catheterisation, but now she’s a bit bigger we’ve finally managed to figure out how to do it ourselves every time. Not having an appointment at 10:30 a.m. Monday to Friday definitely makes my life a lot easier! Her next spina bifida check up is at the end of this month so keep your fingers crossed it’s still all good news.
Oh, I almost forgot, when we went back to the hospital in Basel for her hip dysplasia check up the doctor was extremely pleased and said he no longer needs to see her. Her hips will be checked regularly at the spina bifida clinic anyway but she won’t be needing a harness again.
Between physiotherapy, carers’ and doctors’ appointments and various visitors we’ve been kept very busy. Luckily Zyma is a relatively easy baby even when she’s at her whiniest and so far I’ve had no problem getting on the bus with her – although I have had to rush to pay and leave the supermarket a few times so I could feed her on a bench outside. Fortunately it’s usually warm enough to do that now! My mam and brother came to visit recently so she also had her first train ride – she did very well, feeding on the way there and then hanging out in the carrier on daddy on the way back. The next challenge will be a looong car ride to visit Jan’s dad and attend his belated 70th birthday party. Wish us luck! She also still wakes 2-3 times a night to eat, meaning I’m often pretty zombie-like in the morning. It’s all worth it though. We couldn’t be prouder of our funny, smiley, wriggly little bean (my nickname for her). Happy half birthday baby girl. Mammy and daddy love you very much.
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.
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…
How is my baby three months old? It feels like only last week that I was writing the previous update!
So, we’re three months in and it feels like we’re starting to get the hang of things. One time I even put her in the carrier and went shopping with her in town – alone since Jan is back at work now. Mostly still from home but last week he actually spent three days in the office. Naturally Zyma chose the first of those days to be extra fussy so I didn’t even manage a shower!
Within days of me publishing my two month post Zyma started to coo and it’s the cutest sound ever. At first it was sporadic but over the past three days or so she’s been becoming increasingly vocal. I think babbling may arrive soon! She’s also started smiling, which just melts my heart. Jan and I don’t get many of them though – she reserves most of them for the mobile that hangs above her changing mat. In fairness it is an amazing mobile! The girlfriend of one of Jan’s colleagues made it and I would happily have paid actual money for one. Zyma still isn’t the biggest fan of nappy changes but for the ones where she does stay calm she’ll lie and coo up at her mobile – provided we keep it spinning!
Last week baby girl got her harness off. The doctor was really pleased with her and how quickly things resolved. We have to go back for a check up after 6 weeks but hopefully all will be well and we’ll be done with the subject of hip dysplasia. Not having to deal with a harness makes tummy time so much easier and she’s getting really good at lifting her head, as long as she’s propped up on a pillow. It’s still too difficult when lying flat so she mostly just complains or lies there and licks the mat. She passed the 4.5 kg (9 lb 14 oz) mark recently, meaning she’s actually deviating from her curve now. She’s always been around the 10th percentile; now she’s slowly creeping towards the 25th. She also had her first set of vaccinations at the end of February and Jan said that she didn’t even flinch! (He went with her because I finally got round to arranging my postpartum check up and the appointment ended up being at the same time as hers). After the jabs I relaxed slightly about being out in public, so she’s now been to two hospital appointments on the bus and we’ve taken the tram into town instead of walking.
I am still always tired (even though she mostly only wakes up twice at night now – except last night when it was 4 times!) but I am incredibly happy. It’s such a privilege to watch her grow and interact a little more every day. My next update will be at 6 months when I expect she’ll have changed beyond all recognition!
On a sort of side note, as well as being Zyma’s three month birthday, today is the three month anniversary of my due date for the twins. We love our little girl with all our hearts but that doesn’t mean we’ve forgotten our boys. I can’t even imagine how my life would have been with two three year olds running around but it definitely wouldn’t have been dull! l love you and miss you, teeny stars ⭐🌟.
First of all thank you to everyone who made suggestions for how to read with a small baby (I’m not sure I can continue calling her a newborn now she’s coming up 12 weeks!). Back when I wrote that post Zyma would regularly fall asleep while breastfeeding and have to constantly be reminded to drink. She’s much better now – although her new thing is wriggling and pulling and turning her head, which is slightly distracting and not really compatible with reading! I have actually remembered to bring my book into the living room in the morning for the last few weeks though, so I managed to do some reading while she napped (on me), but I’ve recently had to turn my attention to cross stitch (for a new baby gift). I can only pursue one hobby at a time so February was another two-book month.
I’m linking up with Steph and Jana as always even though I don’t have much to say! Here are the two books I read in February.
The Last Thing He Told Me by Laura Dave. Before Owen Michaels disappears, he manages to smuggle a note to his beloved wife of one year: Protect her. Despite her confusion and fear, Hannah Hall immediately knows to whom the note refers: Owen’s sixteen-year-old daughter, Bailey. Bailey who lost her mother tragically as a child and wants absolutely nothing to do with her new stepmother. As Hannah’s increasingly desperate calls to Owen go unanswered; as the FBI arrests Owen’s boss; as a US Marshal and FBI agents show up, Hannah quickly realises her husband isn’t who he said he was. And that Bailey just may hold the key to figuring out Owen’s true identity – and why he really disappeared. Hannah and Bailey set out to discover the truth, together, and as they start putting together the pieces of Owen’s past, they soon find themselves building a new future as well. One neither Hannah nor Bailey could have anticipated. I feel like everyone and their dog was reading this last year so it was time I finally caught up! I really enjoyed this book. It wasn’t always totally believable but it kept me sucked in. If I didn’t have a newborn to care for I would have finished it in a day. I didn’t love the epilogue but it was nice to have some closure. Not sure I would really describe it as a thriller though. It’s somewhat suspenseful but not really thrilling. Anyway, 4 stars.
City of Rust by Gemma Fowler. Railey dreams of winning the drone races with her bio-robotic gecko friend, Atti. But when a bounty hunter crashes their biggest race yet, the pair are forced to flee to the feared Junker clans who mine the rubbish orbiting the Earth. Rescued by a couple of Junker kids, they discover a danger bigger than anything they’d imagined – but can three kids, a gecko and an ancient computer save the world against the huge trash bomb (and its power-crazed creator) threatening to destroy the world? This is a fun read with lots and action. I loved Atti! Some parts were confusing and I felt like a few of the characters could have been fleshed out more (Care) but it’s an enjoyable enough story and something I could imagine reading with my daughter in the future. 3.5 stars.
That’s it. Once again neither of the books I read were by BAME/BIPOC authors. Not the greatest start to THE year on that front! My goal for March is to read 3 books. Wish me luck! Check out the link up for more book reviews.