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.

 

 

 

 

 

 

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4 thoughts on “Endless 2 week waits

  1. Seeing a little baby on hospital bed is just so tough. That first photo… I felt it in my heart. You are a very brave mum!!! All those things you have gone through… Very strong.

    Isn’t it amazing how powerful a smile from your baby can be? There have been moments when I’ve been absolutely sleep deprived and thought that I will soon crash, but then I see my little munchkin smiling at me, and… Sigh. Things are instantly better.

    By the way, he looks absolutely gorgeous in that last photo – cute little Buddha baby! 🙂

    Liked by 2 people

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