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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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!

Six months of Zyma

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.

Little feet! (But big for her size… they’re always the first thing to grow out of footed clothing)

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.

Half German baby’s first time in Germany (for all of 30 seconds!)

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.

I love this sleepsuit. Dinosaurs are for everyone!

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.

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…

One month of Zyma

Yesterday our baby girl was one month old – on the same day my dad turned 60 – and today she had her one month appointment at the paediatrician followed by a visit from the midwife during which she had her first real bath. Up to now we had only been washing her with a cloth until the plaster came off her back and all the stitches were gone. The paediatrician was very pleased with her. She’s still at the bottom of the weight chart but she’s gaining steadily so that’s fine and she’s definitely getting enough to eat. Currently her favourite thing is mummy – or rather mummy’s boobies 😅. When she’s not guzzling mummy milk she’s still mostly sleeping. During the day at least! For a while after she came home night time was her alert time and she wanted to be fed every two hours (but would go 3-4 hours between feeds during the day). Things are turning around now and most nights she’ll only wake me for food 2-3 times. During the day she’s starting to be more alert and has even been awake and not demanding food long enough for us to read her a story. She’s already met a great uncle and cousin once removed from my side of the family and her aunt and grandma from Jan’s side. Soon my mam and brother are also coming to visit. It’s been so nice seeing people again and getting to introduce her to family! This last month has absolutely flown by but at the same time it’s hard to believe we’ve only had her for a month (on the outside). I won’t say I don’t remember what life was like without her – I most definitely remember sleep! But I’d be absolutely lost if she had to go back to hospital again so let’s hope her hip dysplasia harness works. Happy one month (and one day) birthday baby girl. We love you you very much!