Endless 2 week waits

Two week waits didn’t stop after I became pregnant and had a baby, they just keep coming.  I’ll just insert this caveat, the following read will be well boring if you don’t have a sick child.  I am feeling anxious and neurotic and I need to blog it out to my virtual therapist in the ether.

The first two week wait we are going through is waiting for a helmet for my baby.  This Friday little Buddha will finally get his helmet to round out his flat head.  His head became flat after lying flat on his back for three months in an effort to gain weight.  We aren’t expecting any trouble adjusting to the helmet at all as he is the most chilled baby in the world.  I haven’t heard him cry in a few months and he sleeps easily 10-11 hours a night.  I thought little Buddha is a pretty good descriptor for him?!  Hopefully he accepts the helmet with his usual Zen like attitude.

On Thursday we went to the hospital for an MRI for him.  At 3 months old when he was still deemed ‘Failure to thrive’ due to the breathing problem called Tracheomalacia we saw a team of doctors at the hospital to officially diagnose him with something, other than Tracheomalacia.  He had a long list of symptoms and 2 missed milestones.  The neurologist ordered an MRI and the rest of the team decided we needed more research to possible find either a neurological problem or a genetic problem (type of syndrome) as to why he missed his milestones.  We all had blood taken and were sent home.

3 months later we are back at the hospital for the MRI.  The doctor politely asked if I had any questions, so I asked what the MRI was for.  Simple question I thought? She didn’t know.  Is it just his head? what about his chest? What if he has something on his Trachea causing the breathing problem? She went away to find out, whilst I perused my sons notes on his file.  He doesn’t exhibit most of the symptoms he had at three months anymore.

MRI
Ducky was a hit in the recovery room.

Buddha aced his MRI, I wish I could say the same! It is hard watching your baby be wheeled off to the OR by 5 doctors and you are left waiving goodbye hoping he is going to wake up from the anaesthetic.  Buddha was hungry when he woke up and downed 2 bottles of sugar water immediately.  ‘Woah’,  exclaimed the nurse clearly surprised by his angry need to be fed.  He is clearly a chip off the old block, -I can down a decent sized meal after an op because nil by mouth is torture!

At the end of next week, the same day Buddha gets his helmet we will get a phone call from the doctor with the results of the MRI.  I wanted to be prepared for all possible results so I googled a few things.  MISTAKE!  If you ever want to make yourself crazy, Google possible birth defects and syndromes.  I focussed on Chiari with hydrocephalus because this causes breathing problems.  My other paediatrician has asked me twice if I think he has a hearing problem.  Um no.  I have overanalysed her question and decided she thinks he has CHARGE.   Now I’m super neurotic.  I am hoping he has neither.  I had never heard of Tracheomalacia before Buddha came along so I have now decided to not research.  The best approach to the wait is ignorance and we will deal with any diagnosis when it comes.

Of course there may be no diagnosis.  My hope is that there is nothing else wrong with him and like most Malacia babies his missed milestones were due to his massive effort to breathe in the first three months of his life and like most Malacia babies they grow out of it by 2 years old.

Sometimes I wonder if his Malacia was caused by the IVF with PGD.  Maybe the powers that be said, “so you don’t want a baby that’s blind? How about this then…” Maybe it was caused by things I ate, or did not eat whilst pregnant.  Was it my low B12? Was it my age?

I am jealous of other Mothers.  Facebook will display a proud mothers post about their baby getting their ‘license to roll’ at 6 weeks or something.  I feel proud but mostly a sense relief when Little Buddha smiled, opened his mouth to be fed, took a toy and sucked it.  The Nanny said he rolled over, but we are yet to see it.  When a tree falls over in the woods…

It’s been a long journey for the last 6 months.  Well intentioned strangers will say, babies grow up so fast, enjoy every moment!  I reflect on every moment of the first three months.  There were hours spent in hospital watching other people look after my son, or hours thickening formula and preparing syringes so I can feed him through a feeding tube every three hours, or waiting with anticipation every week at hospital to see if he had gained any weight.

Then he smiled.  All the anxiety and stress was forgotten.

In stroller

Each week, we still have physio and a speech therapist and every month we are at the hospital for a check up.  I work three days a week and on the other two days off it seems I am driving to a hospital, a helmet place, or waiting at home for the physio, speech therapist etc..   I know it will all get better, but today has been a bad day.

 

 

 

 

 

 

Helmet baby

I am back at work after 6 months maternity leave and I must say it isn’t bad. I missed being able to focus on work (not what I need to do around the house)and have contact with other Mothers!  In Holland they don’t have mothers groups and I am an expat so a network of friends is hard to create.

When I am feeling like the only one who’s baby missed his milestones and is having to go through MRI’s and endless doctors visits, there are actually others at work who went through the same thing. What a relief it is to hear other peoples stories.  I was starting to feel a little hopeless about the hospital visits and the progress my son was making.

We have a great Nanny who is everything we wanted and more. The nanny leaves us a cute diary of what my little boy has done all day and even gifts from him.  Last week she had printed his foot on a glass and painted it and gave it to us as a present!

On the days I am at home it is an endless cycle of housework and visiting doctors and physios.

My son was deemed a failure to thrive baby and has Tracheomalacia (breathing problem) so he hasn’t had the best start in life.  Yesterday we were at the paediatrician and were excited to show her all the progress he has made and how he is fattening up.

She was super stoked at his growth but never is really happy at everything. I am constantly analysing and guessing what she is saying and thinking.   The other reason we were there was for her to refer us to the head doctor.  Due to Thomas lying flat on his back for three months he has a super obvious flat head.

We have had physio for the last three months and we constantly hold him but we can’t stop him sleeping on the back of his head at night. We raised this many times with the physio and she measured it and called the hospital to see if we can arrange a helmet.

This was at 5 months. Yesterday when he saw the head doctor he was 6 months 2 weeks.  The doctor said we should measure him up at the hospital and decide whether we wanted one as a helmet is for purely cosmetic reasons only, despite him having a severely flat head.

In no way did she even slightly push us to get one. I sat there vaguely listening to her and put myself in my sons shoes at age 15.  He would want a helmet.

I have spent a night thinking about helmets and researching other peoples stories. I am now really upset that I let it go this long.  All the while I was taking a ‘wait and see’ approach to his head rounding out because the doctors assured us as he does more tummy time and sitting time it would round out on its own.  It didn’t, it got worse.  Note: when it is severe it doesn’t go away on its own.  His hair won’t cover it, ever.

So today I am feeling Mother guilt. My husband and the Nanny went to the hospital to get him measured whilst I sat at work thinking about it.  My husband (biggest optimist ever) took the news extremely hard.  He convinced himself the head was getting rounder and Thomas wouldn’t need a helmet.

It had actually gotten worse. I’m feeling bad about not getting to go and get him measured and I’m feeling bad that the Nanny had to take him there. All the stories I have read about helmets assured me that we would not regret making this decision.

Rather than sit around feeling sad about yet another thing I cannot control with my son I’m going to take some ‘before photos’ of his head and hope like heck we haven’t left it too late to make a difference. I really pray and hope in 6 months’ time I will have photos of a newly round head!!

 

Little Buddha goes on holiday

I go back to work on Monday and today is my last day of maternity leave.  Knowing this day was coming we planned a holiday for June to soften the blow and give my husband more time with our 5 month old.

Like most Dutchies on holiday we packed the car and followed the route to the sun.  (freeway in France that goes from North to south).  Unlike most Dutchies we didn’t take a caravan and everything but the kitchen sink. I’d say 99% of the boot space went to the stroller and the travel cot.  We were traveling light and we were traveling with a baby.  We had 5 small bags in total, 2 for us and 3 for the little one.  A little word of advice, when buying/borrowing the travel cot get a demonstration of how to erect it first.

Our first stop was Colmar in the Alsace region in France.  My sister promised it would be the quaintest town I’d see and well worth a visit.  Colmar didn’t disappoint and I took heaps of photos of colorful buildings and cute hanging pots. Colmar is surrounded by wineries so we had a few tastings too.  The little guy slept the whole way on the 5 hour drive there, win!

Colmar 1 colmar 2

Our next stop was Bedoin, Provence. If I thought Colmar was surrounded by wineries then this area took it to a whole new level. Every square inch was covered in vines!

Bedoin with Mt Ventoux in the background
Bedoin with Mt Ventoux in the background

6 hours driving and little Buddha slept the whole way again. I was prompted to Skype my mother and ask if it was normal he slept the whole way. We stopped for feedings and changing but he’d immediately sleep in the car again. Mum assured me if he is doing everything else normally then he is just a good traveler.  Mum’s are good for assurance!  I love the service stations on the freeway in Europe.  There is always a clean place to change the nappy and there is always a microwave to heat a baby’s  bottle.

In Bedoin we stayed with another couple, Mary & Ed, good Dutchies who brought everything from home including a BBQ and a fan! The reason we had travelled to Bedoin was to do a charity cycling event.  Mary has MS and she organized a team to climb Mont Ventoux 3 times to raise money for MS.  Our husbands started at 7am and spent 9 hours on the bike going up and down  Mont Ventoux three times.

It was a beautiful day and I felt super-lazy sunbathing, swimming and waiting for them to return.  I don’t know what possessed me but I asked to borrow Mary’s bike to climb Mt Ventoux the next day. (Dumb, dumb, dumb…)

I’ve climbed this mountain before when I was fit.  Now I’m 5 kilos heavier and post-baby unfit.  In hindsight, it was not a good idea.  I was cycling at snails pace and probably could have walked up the mountain faster.  Little French men cruised past me easily asking ‘ca va’? I would smile and say ‘yes, I’m OK’!  As I watched their little bums ride off in the distance I would silently curse my hair-brained idea.

But yay, I conquered the baldy, windy mountain and took a photo to prove it!

Mt Ventoux

I was cold at the top of the mountain, and on the descent, so I spent the rest of my day stuffing myself with cheese, chocolate and wine to warm up.

Little Buddha hasn’t mastered the art of stuffing his face like his parents.  We try to feed him puréed fruit and veg as the doctor has instructed. We fall about laughing when he tries to suck food down like he’s sucking a bottle. I’m sure we are not boosting his confidence but the sucking noises and disgusted looks are hilarious.

Yes your parents are eating again...
yes your parents are eating again…

Next stop was Grimaud, South coast of France.  Wow.  We stayed on a campground that was entirely filled with little caravans arranged like a giant suburb on the beach.  My favourite part of the day was 8:00am.  I would go to the café on the beach and order coffee and pastries and we would watch the beach start to populate with families and the bay start to liven up as the sailing boats left St Tropez.  Little Buddha, liked watching the tops of the palm trees.

beach

Then we returned to rainy grey Holland, it was super depressing enough but to top it off in the post I had received a fine for driving through a red light. (240 euro – Ouch!) Then the little one started sniffling…  His first cold ever.  I am currently having a lot of fun googling mucous suckers.  I bought the Nubi aspirator, which is the biggest waste of 6 euro ever.  Now I am looking at the Frida nose sucker.  I just have to get past the yukky utube videos and buy one.

thomas

 

May

My hair is still falling out, I’m even finding hair in between the keys of the keyboard.  Whilst pregnant my hair didn’t fall out, it was never shiny and thick but it didn’t fall out.  Now I have hair falling out by the handful, it settles around my house and in drain holes.  I even found it in my baby’s nappies.  It’s now nearly 5 months post partum and I fear I wont have any hair left soon!

Nearly 5 months post partum..woah.  Unfortunately time hasn’t flown for me!  The first three months of my son’s life were spent in and out of hospital with a ‘Failure to Thrive’ baby due to having a condition called Tracheomalacia, (breathing problems).  After three months he turned into a real baby, he managed to grow, smile and coo.  This week he made it on the growth curve.  We were so happy, even my po-faced pediatrician did a little fist pump!

My birthday also falls in May and besides receiving a push mower and a weed eater, (I asked for them 🙂 We went to Spain for a week.  In hindsight if we went again we’d do it differently now that we have a baby.  Normally we would fly low cost, pick up the cheapest rental car and stay in a small town where we could cycle and hike but also travel to a big city to sight see and shop if we wanted to.

Spain
My mum bought this sailor outfit, I’m thinking Prince William wore something like this when he was a baby? Ha ha, this photo is so coming out at the 21st!

Ryan air, where every expense is spared.  Ha ha I read that quote somewhere and I still love it!  But kudos to you Ryan air..I will still fly low cost! I can book a baby item for only 10 euro each way and stuff it full of my luggage and there is no weight limit.  The best part is lining up with the priority travellers with your stroller and boarding first!  I was curious to see how the little one would travel and he nailed it.  The little Buddha managed a 30 second cry and slept through most of it!

Rental cars are a different story.  A fiat panda with 2 doors isn’t going to cut it anymore.  I need a 5 door, big booted car to fit the stroller.  We mentioned this to guy at the rental company who offered us a big fuck off SUV for only 10 euros extra.  I’m sorry environment.. but I have fallen in love with a 4 wheel drive, diesel, high and spacious car.  The wagon even fit in the boot with all of our bags, hallelujah.  I am now in the process of upgrading my car at home to a family car.

We drove and saw little villages around where we were staying but the best day was in Valencia when we walked about in the city.  The next holiday will consist of a city trip, with good lift access everywhere.  Its no fun carrying the stroller up and down stairs!  We will also need to go somewhere where there are plenty of McDonalds because you can always get your bottle warmed up and be guaranteed of a toilet with a change table.  I never thought that would be a problem!

Valencia
Walking with the stroller in Valencia

Spain was sunny and the heat made my sons breathing louder and a little worrying.  I consulted my favourite fear-mongering Facebook group ‘love for Malacia babies’ about what I could do.  The comments put the fear of god into me and I didn’t sleep the final night in Spain due to listening to see if my baby made it through the night.  Of course he did and the doctor at the hospital the next day in Holland made me feel like an idiot.  I think he had just Googled my son’s condition and after the perfunctory chest monitor with the stethoscope he concluded, “yes its a tragedy that some babies do die when they stop breathing, but there is nothing wrong with his lungs and if you monitor him you will go crazy’.  On cue my son let out a sigh and farted.  I felt the same way.  Fuck you doctor for pretending you know what you are talking about!

I have less than a month of maternity leave before going back to work.  Initially I thought, ‘I cant wait, get me back to work now!’, but now the weather is nice and I’m not in and out of hospital I’m happy to stay at home and do Pinterest projects and watch baby TV shows.  Baby changes everything and In the club are current favourites!  (OMG, I hope I’m not the only mum that loves this crap TV).  The paediatrician has advised against day-care because if my son gets a mild cough it can escalate quickly to a hospital visit.  So I’m interviewing Nanny’s today.

I feel bad saying this but it is 6 euro and hour for a nanny and 8-10 euro if they will cook and clean for you too.  I realise this is ridiculously cheap compared to other countries but compared to the salary level here it is actually a lot.  I’m not sure whether to choose an older lady who has kids of her own and years of experience, or a young girl fresh out of school with all the theory on kids but up to date first-aid and CPR skills.  I’m hoping for a Dutch and English speaking Nanny with up to date CPR skills and who loves babies.  I hope there is a good one out there!!

 

Peonies and poos

He fixed his eyes on mine, moved his tie aside and then like a boss, urinated all over my face.  As I cleaned his bum and fastened a new nappy I wondered who the heck gave us a romper with a tie on it?  This was a moment where I felt the full weight of motherhood and the thankless tasks I do every day.

Thomas with Tie

Last week was winter in Holland and this week Summer came with a vengeance.. The heat, the tiredness and the monotony has made me belligerent.  My Australian passport arrived and so did my Aussie attitude.  When its hot, there is no time to mince words and beat around the bush, you need to tell it like it is.  My husband declared at 4pm the day before Mothers day he needed to go to the supermarket and organise my mothers day present.  I nearly pulled the car over to get his full attention..

“you what?….I have been waiting 37 years to be a  mother and now I spend my entire day cleaning shit and you need to go to the fucking supermarket! to buy what?  carnations and fucking chocolates??  Thanks for planning something special. ”

I think my husband was a little scared by my little outburst as he surprised me with breakfast and peonies.. and a ring!  wahoo!  I was spoilt. 🙂

Here’s a nice little ditty over Mothers day that every mother can relate to; Mothers Day*

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My neighbours kids drive me crazy.  They kick their ball over the fence and then bang on the wall by the front door so I can unlock the gate so they can get their ball back.  They do this more than once a day and it is normally when I have just sat down at the ‘feeding chair  to feed the baby.  (The chair has remotes, bibs, phone and ipad all within reach to multitask).  I normally comply and assume that in a few years my child will yell at the top of his lungs and kick the ball in their back yard.  Therefore I should try not to get so angry.

However,these are the neighbours that sent my  cat to the pound to teach us a lesson to not let her out of the yard.  I don’t know why they just didn’t bring her back to us and tell us they didn’t like her in their yard?  We only found out through their delightful kids that they sent her to the pound because “Mummy hates your cat because it makes her scared”.

The banging on the door continued, the baby woke up, I was hot and bothered, I started to devise a devious plan.  The nappy bin sat next to the neighbours wall all weekend.  1 meter from their lounge set.  It was 30 degrees in the sun and I couldn’t empty it until Monday when the nappy bin at the school was open again.  🙂

Hope you are enjoying the heat my lovely neighbours!!!

 

*If you like the men in Game of Thrones I’d read her “Fuck you, game of thrones” post 🙂

 

The Koala Meeting.

This week our hospital visits culminated in a meeting at a big children’s hospital in Holland.  The meeting, called a ‘Koala meeting’ is set up so your child gets examined by a group of doctors, then they go away for 20 minutes and deliberate and then they come back with a diagnosis or a new plan for testing.  I was imagining the team from the TV show ‘House’ sitting in a meeting room with a flip chart of my sons symptoms and then systematically crossing off each condition.  I was pretty nervous to attend the meeting but I love all things medical so I was also excited to see what would happen.  (I so chose the wrong profession!)

maxresdefault

My son is 3 and a half months old and had trouble growing in the first month.  He went back to hospital for testing and fattening up for 2 weeks and since then we go back and forth to the hospital every week for testing and check ups.  I have subsequently become educated on Tracheomalacia and reasons for Failure to Thrive in infants and I spend a lot of time on the internet.  I had many unanswered questions and so the opportunity to meet with all the doctors at once was amazing.

We were taken to a large examination room where Thomas was measured and weighed.  Then the doctors filed in.  The neurologist, the paediatrician, the metabolist and the geneticist.  They all took turns examining Thomas and then sat down to go through his medical history with me.  It was kind of like a job interview, us on one side of the table and 4 people asking questions on the other side!  It took about 20 minutes to sum up his short life and then they excused themselves to deliberate some more.

As they left I was going over everything in my mind and hoped I had given them all the information they needed to make connections and to come up with something.  This week my doctor called and said I had very low B12 levels.  My son also had low B12 at the start.  Therefore I wondered if this could have been a cause of the slow growth at the start? shouldn’t the prenatal vitamins cover B12?   I mentioned the slight tongue tie and possible silent reflux and aspiration etc…. I’m pretty sure I had covered everything.

They came back in with the verdict.. more testing.  Thomas will get a MRI and both me and my husband will have a full panel of genetic testing done to see if something comes up.  This will take more than 6 months and in the mean time we just wait and see what happens.  I kind of expected this to be the verdict as we have ruled out most of the obvious illnesses by testing at our local hospital.  I suspect (and hope) that the Tracheomalacia is the cause of the Failure to Thrive and the developmental delay and he should just grow out of it by 2 years.

I don’t know if it is a good thing or not, but as I was talking about Thomas’ medical history one of the doctors asked what my medical background was?! ha ha.  My Husband laughed and said I spend too much time on the net.  OK Fair point, but I’m a SAHM, I’m anxious and worried about my son, and I’m an accountant.  This is clearly a recipe for way too much time researching possible medical problems. If I sound like a doctor, kudos to me, I’ll take it 🙂

 

 

 

 

Double chins and thunder thighs

michelin

I have such joy in looking at my baby’s double chins and his big Buddha belly.  A month ago his Failure To Thrive turned a corner and his little skinny body now resembles a little chubster baby from the baby ads.  My paediatrician is happy too, she allowed us a 2 hour flight to Spain next month for a holiday!

Spain! wahoo, sun and swimming… and hang on that also means bathing suits and shorts.  Oh no, I will need to wear my maternity bathing suit!  Now we have Little Buddha at home I spend a large part of my day drinking coffee and eating biscuits.  This probably explains my failure to lose my pregnancy weight.  When you wear yoga pants most of the day you hide the fact your thighs resemble the baby’s thighs…x 10.

Pre baby I basically ate anything I wanted and I did enough exercise to counteract obesity.  Now I may have to go on a diet.  I love food, especially cakes, biscuits and chocolate and a diet scares the hell out of me.  However one look at my bum and I decided to give up the crispy white chocolate I am so fond of.

Spring has arrived and my baby is ok to go outside therefore I am focussing on getting back in shape.  I have taken to walking around and around the neighbourhood.  I’m sure my neighbours think I’m mad but if the little one will sleep a solid 2 hours whilst walking then I’ll do it.  I had a blow out the other day when I planned to throw the smelly nappies out in the allocated bin by the school.  I started walking and forgot about them.  It started getting warmer and 1 hour later I’m sure they had bubbled and festered but I was oblivious to the smell.  I even bumped into one of my cycling buddies who politely said nothing!

fat bum

I have also started to cycle again.  Lycra leaves nothing to the imagination and each time I struggle to zip up my jersey I am more motivated to train harder to lose the weight.  I am too slow for my normal cycling group so I started with another group.  I rocked up and was surprised to see my paediatrician ready to ride.  OK, awkward, this lady has seen my husband and I both cry and go through some of the hardest things we have ever done.  However, it turns out she doesn’t mix work and personal life, so it was not uncomfortable at all.  However, I still want to work my way back to the fast group!