It’s All Good

That’s what Dr Dan said at the conclusion of yesterday’s appointment.  Dr Dan is the neonatologist that Eva sees for follow up.  He is delightful and very down to earth.  Andrew was able to come with us yesterday so that was great.

The big news is that Eva now weighs 9.53kg!  I really like these scales as they give a much better number than the local maternal and child health clinic ones.  That means that she put on her birth weight in the past 4 months.  I am thinking that we no longer need to go to the health clinic for reviews when the scales only give me grief!  Everyone had been commenting on how big so was getting  but I just didn’t let myself believe it.  Maybe at the next weigh-in Eva will be in double figures which may be worth an Aunty Ali cake as celebration. I guess our last month of lots of avocado and nut butters has helped maybe along with me relaxing a little.  All the swimming and consequent eating in Fiji may have helped too.

Eva’s weight is near the 10th centile and unsurprisingly her height and head circumference is in the 25th centile.  She is out of proportion which I know from her clothes where she needs the height but not the width.

Overall Dr Dan is very impressed with her developmental progress for a 25-weeker. He reassured us that next Winter will be much easier with less viral infections to contend with.  As he checked her over he found her ears and throat to be red and her glands to be swollen so along with her runny nose and slightly gooey eyes we have another viral illness right now.  He agrees that her persistent dry cough and occasional wheezing that comes with each virus is asthma but wonders if the trauma of administering an inhaler via a spacer is worth it when she doesn’t really suffer from major breathlessness.  As usual she was a very good patient allowing him to examine her without complaint. I know this question can’t last forever but it does make us wonder if that is from her personality or from her constant medical examination for the first 3 months of her life.

Dr Dan was delighted to see her walking and babbling for the whole visit.  He said that currently there are no signs of any developmental delay but that there may be signs in the future as she heads to school but it looks to be unlikely.  We can look forward to more words in the upcoming months.  We had a big chat about eczema which is really bothering Eva at the moment.  Although we have always been lathering her with moisturiser he suggested oil in the bath nightly which is what we used to do when she was in her baby bath.

Overall it was a great appointment with lots of positive outcomes.

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Keeping it in perspective

Not long after Eva’s poor weigh in I had occasion to buy 1kg of Butter.  I often buy 1kg of flour or rice but I just pick up the packet and don’t really give the weight much thought.  This time as I stood there holding 1kg of butter in my hands I looked to Eva and realised that at birth she weighed less than what I hold in my hands.  It made me remember that she has come so far since her arrival into the world at 790g with her lowest weight being 625g.

Recently we joined a premature baby support group here in Melbourne, Life’s Little Treasures.  They run a local morning tea monthly and I have enjoyed seeing and hearing from other premature baby mums.  The following poem was on the back of the welcome booklet and I wanted to share it.  It is written in relation to a child with a life long disability but I still feel that I can relate to it in terms of the first few months of Eva’s life.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans: the Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It’s all very exciting.

After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and but new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower placed than Italy, less flashy than Italy. But after you’ve been there awhile you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

(Copyright 1987 by Emily Perl Kingsley. All rights reserved.)

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A Dr Dan Visit

Eva had a further follow up with Dr Dan, the neonatal consultant we first saw in February.  Overall he was very pleased with Eva’s development and was again fantastic at spending time with us and listening to our questions.

Eva’s weight was 8.88kg (19lb 6oz).  I really like these scales because they weigh heavier than our maternal health clinic and make it seem like Eva is stacking on the weight!  That is just short of a kilo gained in 3 months and has jumped her from the 2nd to 9th centile on the chart.  I am proud of that!  Her height and head circumference are on the 25th centile.

Eva did some good demonstrations of play using left and right hands and cruising with a small step from the table to me.  She also demonstrated lovely lying on the floor and melting down toddler style when I took something away.  Eva helped Dr Dan to take her top over her head, which he thought was very good and she showed good fine motor skills by eating sultanas.  Eva pointed to the posters of babies and said “baba” and talked about “Dada” too.

Eva is still standing on tippy toes at times when upright but fortunately not constantly.  Eva is being referred to a Growth and Development Clinic where her physical and psychological development will be assessed and any further intervention will be initiated.

We discussed further immunisations. Eva is due for chicken pox and didn’t have the rotavirus vaccine in the UK so needs it now.  I will have to take her to the Mercy Hospital when Dr Dan consults to have these done because the rotavirus is only licensed at the GP when the child is under 6 months.  It’s a little tricky that the vaccination schedules are different in the two countries.

Dr Dan again discussed the likelihood of asthma appearing in the near future with Winter on it’s way.   We just have to sit it out and see how her body reacts to the viruses it is faced with.

Eva’s upper middle teeth have some indentations on them.  I was concerned that it was decay or a knock to them but Dr Dan thinks that it is most likely a malformation of the enamel.  Tooth enamel is formed after birth at which point Eva may not have had the right balance of minerals in her body to form it properly.  Anyway next stop is a paediatric dentist for assessment.

Eva woke up with puffy eyes and a small rash around her nose. Dr Dan thought that this might be a sign that she was coming down with a viral illness.  Overnight she was upset several times so maybe something is brewing.

Eva was very tired by the end of the appointment and fell asleep within minutes of being in the car.  It’s hard work entertaining yourself in the waiting room and then performing for the Dr!

Day 105 – Monday February 23rd 2009

We are home with our gorgeous daughter! What a long wait it has been for this day to finally arrive.  Eva chose to wait until nearly her due date to grace our home with her presence.  Wonderfully Grace and Eva left St Michael’s at exactly the same time after the journey they have been on together.  It was really a lovely moment to be sharing with Claire and Barry after our girls were born 5 days apart.

The whole day was one of quiet excitement as the reality of taking Eva home was drawing near.  Eva weighed 2.10kg, which is an increase of 20g meaning that we can be discharged.  Dr Laura came to visit after her night duty and was relieved that all was well and we would be going.  Dr Manal came to do a final check and printed out Eva’s discharge summary letter, which is 6 pages long!

The nursing staff ordered some more medications from the pharmacy to make sure that we had enough to keep us going for over a week.  When at home we will need to get repeat prescriptions from the GP and then have them filled at the pharmacy.  Of course even this could be a challenge as they may not normally have these type of medications. 

Eva had her eyes checked this afternoon.  The area of concern has faded so Eva needs no further follow up, which is a great relief.  Of course it is always unpleasant for Eva to have her eyes checked, however today was the first time we have heard her scream.  Luckily Daddy was on hand to give her a cuddle afterwards!

We rugged Eva up in a warm growsuit, cardigan, hat and a snow suit to put her in the car seat.  Of course all these layers meant we had to extend the straps and she couldn’t move.  Eva and Grace slept soundly through the whole procedure.  They both look lost in their car seats.  Andrew very proudly carried Eva to the car and we managed to put the seat in without too much drama.

Luckily we had a mild day at 11 degrees but Eva was still cold when we came inside.  Luckily Daddy was on hand to offer warming up cuddles.