2 Oct - Little lungs and humble pie

I’m humbled by the nurse that buys premature nappies for us on her days off, or by the twenty four families (one in the UK!) that are feeding us for the next 2 months (and the friend from church co-ordinating the logistics of that mountain of food), or by the doctor who regularly called to see how our son was at 2am when he had a four week-old baby of his own, or by my wife who woke up every three hours for the five weeks to pump milk for a baby she had barely touched until ten days ago, or by the strangers who pray daily for his health and our sanity, or by family and a church community that loves extravagantly expecting nothing in return, or by nurses who work twelve hour shifts day and night, or by the cover of a medical aid. Over the past seven weeks I have come closer to grasping grace than ever before.

First bath - 1 Oct 06

And we continue to wonder at Sammy B growing. He’s now seven weeks old and weighed in today at 1480 grams (3.3 pounds) - a significant gain from his birthweight of 860 grams (1.9 pounds). He’s now getting 10ml of his mom’s breastmilk every hour directly into the jejunum, the bit of intestine just below the stomach. The focus is now his lungs.

Since his birth the phases we have been through look something like this:
the initial trauma phase – shock and grief associated with such an early and stressful birth;

then infections – ten days on our knees and on the edge of the little man’s life – antibiotics, disintegrating veins and ventilators;

the miracles came next – two weeks of unbelievable healing and positive moves – drips being pulled out, antibiotics stopped, closed incubators;

we’re now in the plateau phase – good progress but the slope of the graph has flattened markedly with stabilised feeding and steady weight gain but seemingly little progress on his lungs – bored doctors;

The next phase? the shift from NICU to home perhaps – our anticipation and excitement for this has been reduced to fear in the past weeks as we witness the daily oxygen desaturation and apnoea episodes from these little lungs that can’t quite hold their own.

His lungs remain the primary concern now and will be for many months and possibly years to come. Sammy is suffering from something common to most preemies born as early as him - Hyaline Membrane Disease. The trauma of the (life-saving) ventilator and the earlier infections on his very immature lungs resulted in these membranes forming within the alveoli thus blocking effective oxygen exchange with the bloodstream. Practically this means that he still requires assistance with his breathing in the form of a bit (only 4% today) of extra oxygen and some positive pressure. He seemed to take massive leaps in getting to this stage of low level breathing assistance from full ventilation and I suppose we were expecting the leaps to continue but they have slowed right down. Without any other factors (like the swelling from the infection) clouding the picture we can often see just how difficult it is for him to breath. In the past ten days Mich has done many hours of skin to skin kangaroo care so she can feel the desaturations coming and is able to stimulate him appropriately. But at times he will simply stop breathing and turn blue while the monitors start screaming and nurses come running. It's scary when this happens in NICU. We don't like to think too much of how we'd deal with it at home.

Last week Paul happened to mention that if he continues to gain weight we could be looking at getting out of NICU by the end of October but to get there Sam’s lungs need to be working a lot better. Despite our hesitation at this prospect people less in the thick of things have caused us to recognise the immense progress Sammy has already made in the past month. There is every reason to believe he’ll be confidently breathing on his own in a month - we have witnessed so many miracles in this little fella’s life already! And we are confident that God will heal his lungs fully in time. I forgot to mention that he had his first real bath yesterday and seemed to really enjoy it. I suppose one would after seven weeks of no washing!

If you are praying please ask for full healing to occur in his lungs. We’d also like to ask you to pray for Matt who is thoroughly sick and tired of this whole thing and wants his Mommy back now! He frequently wakes up at night and much earlier than normal (is there such thing for a two year old?) which badly knocks our sleep and energy levels. Pray for peace for him. Mich always needs your prayers for energy and “double sleep” when she does – it’s incredible the way she is coping with this!

Thank you for sticking with us. It’s been a long haul to now but Sam has not had an infection for over three weeks, he remains on the nasal prongs and his weight will soon have doubled. We have cooked only a handful of meals for ourselves in seven weeks - a massive up for all our food warriors (the manna brigade) past and to come! It’s been a humbling time but I have an incredible sense of gratitude in all of this too.

I look forward to mails giving only thanks.

With love
Terence

Kangaroo care and Prince Caspian in the NICU