4.73 kg!

Speech therapy and weight update

Ollie saw a speech therapist today. No -not to learn how to talk faster ;) - but to assess his sucking ability and show us exercises to improve his drinking as he is still struggling to drink out of a bottle. There are unfortunately no magic exercises that will make him drink over night and it will take about a week to see an improvement but we will do the stimulations before every feed.
Otherwise, all the iv lines have been removed and Ollie picked up another 200g weighing 4.73kg now.

Ollie hat heute einen Sprachtherapeuten gesehen. Nein -nicht um schnell zu lernen wie man spricht ;) - sondern um seine Trinkfaehigkeit zu beurteilen und um uns Uebungen zu zeigen, die sein Trinken verbessern sollen, da es ihm immer noch schwer faellt, selbst aus einer Flasche zu trinken. Es gibt leider keine Uebungen, die ihn ueber Nacht wieder trinken lassen werden und es wird voraussichtlich eine Woche dauern bevor wir eine Verbesserung sehen werden, aber wir werden die Stimulationen vor jedem Fuettern machen.
Ansonsten wurden alle intravenoesen Katheter entfernt und Ollie hat weitere 200g zugenommen und wiegt jetzt 4.73 kg.

The battle continues

Since the amount of breastmilk was increased, Ollie's left lung again seemed to look worse on radiographs.  The current hypothesis is therefore that the breast milk contains long-chain fatty acids that increases lymph production and that he actually has a chylothorax (lymph accumulation in the chest cavity).  The damage to the delicate lymph channels will heal in time, but for the time being Ollie has to be on special nutrition that contains medium chain fatty acids.

Annett says this tastes like liquidised potato without salt.  If a German thinks that something that tastes like potato isn't nice, then it really isn't nice!  So for now, our hopes of taking Ollie home have been dashed again.  At this point I should be saying something brave and courageous and continue the battle but I just can't.  It's not my battle to fight anyway.

"This is not your fight to win.  This is not the end."  Jehovah Shammah.




Nachdem die Menge an Muttermilch erhoet worden war, sah Ollie's linke Lunge auf dem Roentgenbild wieder schlechter aus. Die Hypothese ist, dass Muttermilch langkettige Fettsaeuren enthaelt, die die Lymphproduktion erhoehen und dass er einen Chylothorax (Ansammlung von Lymphfluessigkeit im Brustkorb) hat. Der Schaden an den feinen Lymphgefaessen wird ueber einen laengeren Zeitraum von selbst heilen, aber fuer den Augenblick muss Ollie eine Spezialnahrung bekommen, die nur kurzkettige Fettsaeuren enthaelt.

Annett sagt, dass es wie duennfluessige Kartoffel ohne Salz schmeckt. Und wenn eine Deutsche denkt, dass irgendetwas, das nach Kartoffel schmeckt, nicht gut schmeckt, dann ist es wirklich nicht gut!
Im Moment sind also unsere Hoffnungen, Ollie mit nach hause nehmen zu koennen mal wieder zerschlagen wurden. Jetzt sollte ich wohl etwas tapferes and aufmunterndes sagen und weiterkaempfen, aber das kann ich nicht. Es ist auch nicht mein Kampf, den wir bestreiten.

"Dies ist nicht dein Kampf, den es zu gewinnen gilt. Dies ist nicht das Ende." Jehovah Shammah.

'n Gebed, van Jan en Niesje Tromp

Hemel Vader, sonder groot woorde kom ons na U toe omdat U ons Vader is en omdat U ons benoudhede en vrese en ja, ook ons behoeftes ken.  Baie dankie dat ons weet dat U in beheer is!

 

Baie dankie vir die vordering wat klein Ollie toon.  Dit is alleen genade en ons gee U al die eer daarvoor.  Dankie vir die wysheid wat U aan die dokters gee wat hom behandel.  Dankie vir elke ander persoon wat by hom gemoeid is, medies gesproke.  Ons weet dat U hulle almal toegerus het vir hierdie taak.  Ons vra in nederigheid dat U hulle die wysheid, liefde en toegewydheid sal gee wat nodig is om vir Ollie te behandel terwyl hy nog in die hospitaal is.

 

Here, baie dankie vir Henry en Annett se toegewydheid aan hul seuntjie.  Ons bid dat U hulle stewig in U hande sal hou en dat U vir hulle weer sal optel uit hierdie moeilike tyd.  Seën hulle, Here, en hou hulle sterk.  Wees ook asb met hul ander seuntjie wat seker nie mooi verstaan wat aangaan nie.  Dankie vir diegene wat na hom omsien.

 

En nou, Here, wil ons maar net weer vir klein Oliver en sy gesin aan U opdra.  Hou hulle naby U hart, Here.  Plaas U hand van genesing oor Ollie en gee dat hy spoedig sal herstel sodat hy huistoe kan gaan om daar verder 'n getuie te kan wees van U grootheid en liefde.  Rus ook asb vir Henry en Annett toe om hom daar te versorg soos wat nodig is.  Dankie vir die voorreg wat ons het om deel te kan wees van hulle lewens deur vir hulle te bid.  Ons sal op ons knieë bly!

 

Dankie, Here Jesus, dat ons hierdie versoeke aan U, ons Vader, kan rig.

 

In U Naam bid ons dit.  Amen.

 

Baie liefde en sterkte, Jan en Niesje Tromp

To Ollie, from Sarah Johnson

Ollie, you don't know me, but that doesn't matter because hearts don't have to know each other in order to care. My heart cares and reaches out to you, little one, with love and admiration for your brave fight for life. Gentle hugs, Sarah

26 March 2012

Only 2 iv lines to go!
Basically everything else has been removed and now there is more baby again than plasters and pipes! Oliver is only getting antibiotics and painkillers now, everything else has been stopped and the oxygen is slowly being weaned. He is also already on 80 ml of milk per feed which is the correct amount for his weight! Otherwise he still has physiotherapy three times a day and he gets quite upset when someone is doing something with him that he does not "approve"! And Ollie REALLY wants to come home now...


Nur noch 2 intravenoese Katheter!
Im Prinzip ist alles andere schon entfernt wurden und jetzt sieht man auch wieder mehr Baby als Pflaster und Schlaeuche! Oliver bekommt nur noch Antibiotika und Schmerzmittel, mit allem anderen wurde aufgehoert und der Sauerstoff wird ganz langsam reduziert. Er bekommt auch schon 80 ml Milch pro Mahlzeit, und das ist die richtige Menge fuer sein Gewicht! Ansonsten hat er noch 3 mal am Tag Physiotherapie und er macht sich lautstark bemerkbar, wenn jemand etwas mit ihm macht, das ihm nicht gefaellt! Und Ollie moechte jetzt wirklich UNBEDINGT nach hause kommen...

Recovering

Ollie is recovering well from the operation! He was wide awake this afternoon, listening to our voices and holding our fingers!
His blood pressure, pulse, oxygen stats are stable; one of the drains has been removed, he was extubated this afternoon and placed back in his oxygen tent, and he is already getting 30 ml of milk every 3 hours again. There are still a lot of "pipes and cables" everywhere though as Ollie has to get quite a bit of medication and iv fluids and he also received a blood transfusion as his haematocrit as well as haemoglobin levels were quite low. But the doctors are happy (and so are we!) and the ICU sisters are really looking after him extremely well!


Ollie erholt sich gut von der Operation! Er war wach, hat unseren Stimmen zugehoert und sich an unseren Fingern festgehalten!
Sein Blutdruck, Puls, Sauerstoffsaettigung sind stabil; eine der Drainagen ist entfernt wurden; der Tubus wurde heute Nachmittag herausgenommen und er ist wieder in seinem Sauerstoff-"Zelt". Und er bekommt jetzt schon alle 3 Stunden 30 ml Milch. Er hat immer noch viele "Schlaeuche und Kabel" ueberall, denn er bekommt noch viele Medikamente und Fluessigkeiten iv und er hat auch eine Bluttransfusion erhalten, weil sein Haematokrit und die Haemoglobinwerte zu niedrig waren. Aber die Aerzte sind zufrieden (und wir auch!) und die Schwestern in der Intensivstation kuemmern sich extrem gut um ihn!

To Ollie, from Gerry and Lina Swan

Oliver you remain in our thoughts and prayers. We pray that you will recover soon and be able to go home with Mom and Dad. Ons het al so lief geword vir jou deur net na jou foto's te kyk. Jy is n rolmodel vir ons almal deur so hard te veg. Liefdegroete Swans

Comments

A couple of people have indicated that they have difficulty in posting comments.  I've made some changes to the permissions on the blog which will hopefully sort it out.  If you still can't comment, please email me at henry.annandale@gmail.com and include your comment.  I'll place it on the blog for Ollie (and everyone else) to read as soon as I have some spare time.

In that vein, something that Mirinda wanted to post follows below.  Thank you Mirinda!

Even though we do not understand it all, we are with you in this battle. That's what friends are for. To stand by each other so some can be strong while others are being pushed to their knees by the rivers and blazes we call LIFE.

Isaiah 43
1 But now, this is what the LORD says— 
  he who created you, Jacob, 
  he who formed you, Israel: 
“Do not fear, for I have redeemed you; 
  I have summoned you by name; you are mine. 
2 When you pass through the waters, 
  I will be with you; 
and when you pass through the rivers, 
  they will not sweep over you. 
When you walk through the fire, 
  you will not be burned; 
  the flames will not set you ablaze.

Op no. 2

Ollie came through the pulmonary banding all right. According to the doctors, his stats are much better. And his left lung already looks clearer. Seeing our little boy with all the pipes coming out of him, and attached to lines and cables, spread-eagled as his arms are taped to wooden planks, is just too much to handle. I wish I could take this burden onto myself.
We are grateful for and celebrate each day we have with Ollie, but sometimes it all just becomes overwhelming. And a lot still lies ahead. Stand for us, while we are struggling back to our feet.

Weight update

Ollie picked up 200g in 3 days!!

Oxygen tent

Ollie's oxygen tent in which he spent the last few days

Round no. 2

The last couple of days have been a tough rollercoaster ride for us as the doctors tried to figure out what the best would be for Ollie. So sorry that we haven't been posting during this time, but it's been a bit confusing and trying.

Ollie will go for his 2nd operation tomorrow. This time they will do a so-called banding, where they tie the pulmonary arteries to reduce the flow through them and so protect the lungs. Although it is a bit earlier than the doctors anticipated, it is clear that he is struggling to breathe and to keep his oxygen levels high enough. While all operations carry risk, the fact that Ollie's left lung doesn't look too great on radiographs, increases his risk.

We are concerned, but know that this is a necessary step for him to improve. Thank you again for so much support from all our friends and even people we don't know, who have been touched by Ollie's story. Please stand with us as we say in humble thankfulness that we recognise every moment with Ollie as a precious gift, but also believe and trust that we will have many more.

Psalm 8.
Sent via my BlackBerry from Vodacom - let your email find you!

With apologies to Switchfoot

Needle and haystack life

Out of infinite time

Out of infinite space

We are right now

You're a needle boy

In a haystack world

We are right now

You're breathing in

The highs and lows

We call it living

- Chorus -

In this needle and haystack life

I found miracles there in Your eyes

It's no accident we're here tonight

We are once in a lifetime

Don't let go

Don't give up hope

All is forgiven

You're breathing in

The highs and lows

We call it living

All is not lost

All is not lost

Become who you are

It happens once in a lifetime

Rollercoaster

Ollie is enjoying the company of Mom here. Annett also looks happy, doesn't she? For the last couple of feedings, Ollie has been vomiting and then it also seems to affect his oxygen levels. The doctors are not too sure why. It's so difficult - just when we think we are going to take him home, something else happens. We truly are not in control.

Power nap

Feeding

Oliver is off the oxygen since this morning and the radiograph from today showed a bit of improvement in his lung! He drank 30, 20, 30 ml on his own over the last few feeds and kept all the milk in which is great as he vomited quite a few times yesterday! Now Ollie just has to become hungry properly and start drinking lots...
Sent via my BlackBerry from Vodacom - let your email find you!

Bath time... I am not very impressed Mom!

Being patient...

Ollie is sleeping nicely at the moment and doing well! The doctor was happy this morning, his left lung sounds a bit better even though there has not been much improvement on the radiograph yet, his repiratory rate is between 64 and 78 (which is still a bit too high but much better compared to what it was a few days ago!). He is also allowed to lie on his left side again, the oxygen has been decreased to 23% (which is almost normal air concentration-21%!) and 1l flow, the milk volume per feeding has gone up to 80ml every 3 hours and he is being bottle fed for 15min at every second feed to slowly get him used to drink on his own again without getting too exhausted...aaand he is wearing clothes again! So, it looks like we have quite a bit of improvement! Now it means waiting patiently until baba is breathing normally and drinking completely on his own... (And being patient is neither Mama's nor Papa's strong trait of character ;)...but how do they say: you grow with your challenges! ). We are proud of you Oliver and love you looooooooots!

Faith

When God solves our problems, we have faith in His abilities. When we think that God doesnt want to solve our problems, He has faith in us, and gives us strength to do it ourselves ~~Elana Odendaal Nogal gepas !!!!

The apples of my eye

Ollie is doing well. His O2 stats are normal and he seems to be breathing more rhythmically. It's so nice to see his beautiful, soulful little eyes! Each day we count ourselves more privileged and blessed.

Bronchoscopy

Ollie's bronchi were full of mucous which they have removed as much of as possible. For now, he is doing much better and has already had nourishing mother's milk again. Physio will continue.
Sent via my BlackBerry from Vodacom - let your email find you!

Aan Ollie

Aan Ollie

Ek sien jou ogies voor my, en wil my verbeel of hulle iets vir my wil se.  Ek is te bang om regtig te hoor wat dit kan wees, ek is jammer my seun.  Vir nou kan ek jou net belowe dat ons elke oomblik dink aan jou en saam met jou is terwyl jy hierdie groot stryd stry.  Ons is lief vir jou en jy maak ons trots!  Ek belowe ook dat ek die beste dokters vir jou sal soek en nie sal ophou bid nie, al laat my geloof my soms in die steek.  Ek weet dat die engele Opdrag gekry het oor jou en dat hulle jou nooit alleen sal los nie.  Hulle hou jou in Veiligheid.  Soek hulle rondom jou my seun - hulle is daar!

2 Sam. 22:31

Pulmonology 2

After 2 days of physic, Ollie's lung has still not recovered.  They were unsure whether it was an effusion or a collapsed lung, so they poked around a bit and couldn't find fluid.  So it has to be a collapsed lung, right?  They will do bronchoscopy later this morning and try and see if they can find a plug that blocks the main stem bronchi and prevents the lung from inflating.

Sleeping in Mom's arms

Pulmonology (Stuff about Ollie's lungs)

Ollie's left lung is doing a bit better.  They have had to increase the O2 supplementation to keep his blood oxygen levels high enough, but he is still below levels that he were when admitted to hospital and shortly after the aorta repair.  It's amazing how his character is coming to the fore!  They must put him on his tummy so that he can expel the phlegm when he coughs, and he fights them when they do this!  Even trying to lift himself up on his forearms.  He is strong, and has an inextinguishable will to live.  A lesson to all of us...

The culture results of sputum they sent away came back with no bacterial growth after 48 hours.

What the doctors said

Ollie was diagnosed with aortic coarctation and unbalanced AV canal.  That's what's written on his chart as 'diagnosis'.

What does it mean, in case you are not medically inclined? It means he has a major blood vessel (the aorta) that it about 50% smaller in certain parts, than what it should be.  Furthermore (as if that's not bad enough...!) he has a small hole between his two bottom heart chambers, a big hole between his two top heart chambers, and the right part of the heart is much bigger than the left part of the heart.  The doctors think that the left part is underdeveloped.

Oxygen 2

Ollie's left lung is collapsed, we were told tonight. Apparently not so bad since physio can sort it out. What normally would be bad news is actually a testimony to how strong he is - he manages >90% SpO2 with one lung. Well done my little boy, you make us proud. Greater is He that lives in you, than he that is in the world.
Sent via my BlackBerry from Vodacom - let your email find you!

Oxygen

Slowly Ollie has gone from 60% to 30% currently. He looks like a little angel, one can hardly believe he has been through so much and still has so much ahead of him! But we know that God's grace is sufficient. And He remains in control.

6 March 2012

Ollie was breastfed last night and this morning.  The little one unfortunately is too tired to drink enough to ensure that he gains weight and therefore the medical team have decided to feed him via nasogastric tube. He weighs 4.1kg now - not bad for having undergone heart surgery and being only 2 weeks old!

5 March 2012

Ollie started breastfeeding again today.  He is a strong little fighter!  They want to start gradually weaning him off oxygen supplementation over the next couple of days.

Some Photos in Hospital

19 February 2012 - Oliver born in Montana Hospital at 15:18
Birth weight: 4.36kg
Height: 57 cm

1 day old, next to Mom in Montana Hospital

My beautiful wife Annett, holding Ollie in ICU.  Ollie almost 2 weeks old

About Oliver George Annandale

This is a blog dedicated to Oliver's recovery - in hospital and beyond.

Henry and Annett appreciates all the SMS, Emails, Prayers and calls from everyone, but finds it
very difficult keeping everyone up to date on Oliver's progress.

This is why this blog was created, so people can follow his progress.  Henry and I will try to post as frequently as we can,  but

PLEASE  REMEMBER LITTLE OLLIE IN YOUR PRAYERS.