When our son, Benjamin, was born on 3 Nov 2011 he was diagnosed with VACTERL association which refers to a recognised group of birth defects which tend to co-occur. Benjamin had several of these, the most significant being a tracheoesophageal fistula or TOF, which meant his throat and stomach was not connected. We started this blog when he was born to keep friends and family up to date and it is a daily record of our journey for the first few weeks of his life. It is best read in chronological order, so to do that,
Benjamin is 1
Wow!! How big is God’s grace?!? We have received it abundantly, exceedingly, overwhelmingly… Our cup runneth over..
1 year ago…
Today…
Thank you God that You heard our prayers, saw our tears and had compassion on us.
We will post lots more photos soon. First, we need some sleep!
Going on 8 months
Hi Everyone!
So many people have asked me to update the blog again, so I decided to make a compilation of some photos we took over the course of the last five months.
While I’m at it, let me just give you a quick update on how our son is doing. Benjamin is a sweet, friendly little boy and loves to show his two teeth with his wide smile. He finds it rather easy to charm anyone from close family to complete strangers and will have a smile on your face in no time.
Benjamin is very active and strong, which makes us a little worried for when he starts to crawl. But for now he just wants to jump whenever his feet touch the ground. For that reason we bought him a jolly jumper that helps to bleed off some of the the excess energy.
By now Benjamin eats porridge, butternut, sweet potato, chicken, banana, strawberry, pear – even biltong! When he started eating he choked rather easily for the first few weeks, but nowadays he seldom has a problem and usually opens his mouth quite eagerly for the next bite. He is also picking up weight nicely and having started on the lowest end of the growth chart he now weighs 7.5kg and is now only one line away from average weight for his age.
Benjamin has already traveled to Durban for his uncle Ben’s wedding in March and also to his nephews, Ekhardt and Reinhart in Johannesburg a few weeks ago. The only problem we had on the plane was that he refused to go to sleep since there is just too much going on for a boy to miss!
I short, he is a real blessing to us and it’s hard to believe he went through such an ordeal. His scar has healed nicely but is still visible. Other than that you will never guess he had life-saving surgery two days after birth. Enjoy the photos!
First word??
A few days ago Benjamin said “googlegoogle”. Now twenty years ago that would not have counted for anything, but hey – these days you’ll find that word in the dictionary! Reminds me of that TV advert long ago where the grandparents desperately try to make the baby say “Ouma” and “Oupa” and eventually he says “Sasol” and flies off in his pram, wheels smoking. You have to check it out!
Anyway, I saw that with my last post I did not publish all the pictures I uploaded with so much care, so do go and and have a look here.
Almost 3 months old
On 3 February 2012 Benjamin will be 3 months old. So much has happened since his birth it feels like a lifetime! Of course for him it is a lifetime, but it feels like that even for Kobie and I.
I do apologise for not sending more regular updates, but now that Benjamin is home there is not much time for sitting behind the computer. Yes, I’m sure all the parents chuckle now with an ‘I told you’ mind bubble above them… And of course I wouldn’t change it for the world.
Benjamin is doing so well. He currently weighs 4.5kg and is 56cm long. Although he is still only on the lowest line on the growth chart he has already doubled his birth weight in less than 3 months. Up to last week we have managed to give him 100% breast milk for which we are very grateful. We are now topping up with one feed of formula every day which works well.
We are still doing the dilation but I’m glad to say by now it is quick and easy and Benjamin does not even cry. We are now doing it every second day for a week and then every third and if by then it does not become tighter again we are finally done!
Benjamin is a very easy baby. He sleeps a lot (seldom wakes more than twice a night and sometimes only once) and only cries when he is tired, hungry or needs to be changed. Sometimes he is awake from 6am onwards and then I usually take him and Chilli for a walk through the neighbourhood so Kobie can catch an extra nap. Very often he falls asleep in the bassinet so that when I get back I can shower and eat before his morning routine starts. By now Benjamin smiles a lot and even starts to make little noises when we talk to him. He is extremely active when he gets changed and loves to kick his little legs like crazy when the nappy is off. Even bath time goes well and he does not cry any more.
Kobie says when it comes to babies some of them are sleepers and some are eaters. Well, Benjamin certainly likes his sleep, but boy can he put up a fuss when he wakes up and his milk is not ready! So perhaps he is both.
He has an appointment with Dr Alexander again next week so then we’ll get the medical opinion, but we think he is doing great.
2011 blog stats
The WordPress.com stats helper monkeys prepared a 2011 annual report (actually just November and December) for this blog.
Here’s an excerpt:
The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 18,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.
Holiday pics
Benjamin’s room
These are all photo’s taken before Benjamin’s birth. Look at Kobie’s tummy! She had a record 10 liters of amniotic fluid which is the most her doctor has ever seen. Having such a lot of fluid is sometimes an indication of some abnormality with the baby as was the case with Benjamin.
We were encouraged to take photo’s of the tummy although Kobie protested very much. But looking back at those photo’s she keeps on saying “I can’t believe it was so HUGE…!” 🙂
We have just started our holiday and are looking forward to some time off at the sea with Kobie’s family. After picking up 130 grams in the first week home he picked up another 170 grams in the second week! We are very glad for the milk supply we’ve built up as we need it from time to time.
I’ll post some more holiday pics soon, although I don’t think Benjamin realises it is holiday. 🙂
Long weekend
We are spending this long weekend in Onrus with Kobie’s family. Benjamin is getting a lot of attention and there is always a willing pair of hands to hold him. He loves his stroller and we all go for a walk with Chilli at least once a day.
More family arrives today so it will be quite a busy affair.
Here are some random pictures I took in the past week.
Happy Doctor
This morning Kobie and I took Benjamin for his 1 week check-up with Dr Alexander, his pediatrician. Driving the N1 to Panorama brought back memories of the countless trips to the hospital but it was great to have the trips behind us and Benjamin in the car.
I never got to say goodbye to Dr Alexander when Benjamin was discharged so it was good to see him again. He examined Benjamin and said he is very happy with his progress. When Kobie said “Oh that’s good” he said “It’s not good, it excellent!” He also weighed Benjamin who clocked in at a sturdy 2.9 kg, 130 grams up from last week. 😉 That is good weight gain for the first week home.
Kobie had a gazillion questions but the bottom line is: Both Benjamin and Kobie are doing well and we must just relax and enjoy him and keep on doing what we are doing.
Benjamin Samuel Marais 