Sunday, July 19

The suckyness that is ABO incompatability and the incredible resilience of Marty Roo

I realise that I tried to get the last post out too quickly and didn't really explain what the problem was with Marty or why we were stuck in hospital so long (and why we're having a hell of a time now that we're home).

ABO incompatibility is a problem that's restricted to mothers who have type O blood who give birth to children with A, B or AB. Marty is A+ (same as me, heh) and Jo is O+. The Rhesus factor isn't an issue here so the negatives or positives mean nothing. Basically, during pregnancy, Jo produced antibodies against Marty's blood. These antibodies produced by type O mothers are the only ones small enough to cross the placenta. So rather than just the usual jaundice you'd expect from your average baby breaking down their excess blood into bilirubin, he has the added bonus of a dose of these antibodies against his own blood in his system fervently attacking his blood and making even more bilirubin.

We're lucky they identified it early because the antibody response occurs in the serum, not the tissues, so the jaundice yellowing doesn't show until their levels are dangerously high. On his first test (24 hours I think) he was already in the red zone so from that point on we had to keep him under UV light and laying on a UV pad (called a wallaby for some reason that no one seems to know) 24 hour a day, only bringing him out for feeds. No cuddles, no clothes, just lot of screaming. The poor bugger had velcro taped to his head to hold a blindfold in place.

In the lightbox with his blindfold on

The problem with the high bilirubin levels, aside from the obvious risk of brain damage, is that they make him really sleepy. The problem with that is the way to clear the bilirubin is to break it down in the liver which is too young to cope with those levels, or with UV light. But to totally clear it from the system it binds to protein and is passed out with the poo. If there's no poo it get's reabsorbed. His levels are so high that it is almost impossible to wake him for a feed and if you do he's too tired to suck and loves the contact after being in the tank that he just snuggles in happily. We were so desperate for him to be well that we followed their advice and supplemented feeling with formula (from a syringe and only after a feed) which got his levels plateaued by day 3 and kept his weight up enough for us to be released.

Finally leaving our postpartum room

So they sent us home with a wallaby under strict instructions to keep him on it as often as possible, so still no cuddles and no clothes, but at least he wasn't stuck in the tank so we could interact with him more. It should have been a relief to be home, and at first it was wonderful, but last night was the worst night of all. Almost nothing we tried would wake him enough to feed. It was so awful to have to basically torture him awake, and horrible to see him lying limp like that. Even the formula, which he'd taken relatively easily in hospital, was a battle and he spat most of it back at me (kind of relieved he doesn't like formula to be honest). He was so hungry and so frustrated that he just screamed and fought and didn't poop!

Our light therapy setup at home

However, this morning we reassessed the whole situation. Clearly squirting formula down his throat wasn't working, neither was trying to force him onto the breast, especially when we needed output (yes, I mean poop, and lots of it). So now we've got Jo pumping (and doing really well) and mimicking the way we'd expect him to feed if he were healthy. Luckily she's a born dairy queen! Now we've ditched the formula entirely and have him drinking loads of breast milk about every 2-3 hours (slow-flo bottle, much kinder than the syringe and he at least learns to suck for food) and he's already much more alert and pooping!! I nearly cried with joy when we had an explosive non-meconium poo! I'm sure I'll start hating them but for now it was better than a Christmas present.

Now we just keep him feeding and when he's not feeding we keep him on his little glow worm pad and hope for the best. We see our pediatrician (who we love, luckily, because you can't meet them until you have a baby!) on Monday and he'll make then next call based on his weight (he went from 8-3 to 7-10 in the first 2 days but leveled out after that), his 'output' and a bilirubin test, which of course means more foot torture. I have no idea how soon we'll know the outcome but we'll keep you posted. For now, please bear with our slow response time and keep sending pooping thoughts!

Marty Roo feeling a bit better!

16 comments:

CupKate said...

Marty the roo has a wallaby pad - and to think you are in Texas! Wish you guys were closer for more hugs all round! Hurrah for the poo - and keep it coming!

Mothersupex said...

We both crowded around the computer reading and looking at our littlest grandchild. We know you have big hurdles but hopefully now there is a new light (not U.V.) at the end of the tunnel.

Photo's are precious and beautiful.

Bring on the breast milk so we can say here's to many poops, so much so that they come out of the diaper leg, (though they make them better now).

Hugs, love and prayers for all, especially both of you for enduring this so well, and not dropping your bundles, but thinking outside the square.

Mum & Dad, Gran & Grandad.

Big A said...

Here's pooping at you, kid.

You're doing a great job and our thoughts (like those of an awful lot of others) are with you all the time.

Thanks for the detailed explanation: we didn't make much headway with Wikipedia.

Bee the Comics Widow said...

We're thinking of you guys! Marty couldn't be with better parents :)

B & C xxx

sophie said...

Thinking of you all... keep the poo coming little marty roo!!
Thanks for the explanation on where things are at Jac, was wondering why a sleeping chile was a bad thing!!
Hope things continue to go from strength to strength...
Lots of hugs and kisses to all xxx

Hilary said...

Hey there you three....how exciting to see such beautiful photos. Sending you all lots of love, hugs and mummy super powers ('though you are proving you have plenty in stock already). If Marty thinks he needs a little pooing advice get him to give Campbell a call....he managed to get me, the change mat and the floor the other night...something his big brother never did!! Lots of love H, C and c

Adrienne said...

A letter to Marty...

Darling Marty,

This is your Auntie Rennie speaking. I'm sorry that our first conversation has to be all business but it is terribly important for all of us that you guzzle back fuel like a hummer and produce First World quantities of associated waste product. There are cuddles to be had and the best way to ensure that you get them is to do as I say. Milk in! Poop out!

Much love,
your Auntie Rennie.

Rita Wilbur said...

Wow! I think I called y'all on the day Marty Roo arrived. What a harrowing story! Lots of unpleasantness, but I'm sure you will all pull through. We said prayers for you at church this evening. YOu all have been very much in our thoughts!

julie said...

what an amazing family you are, may the pooping continue to be plentiful. The photos are so beautiful, thankyou for sharing so much at this difficult time. love and thoughts with you always
jxx

Anonymous said...

Still not got internet at home so can ony visit blog during the week. So excited to see your pictures. Sorry to hear that he could have no cuddles and I hope he starts pooping soon
Love Andrea xx

Anonymous said...

By the way, he looks lovely! Love his chubby cheeks! Congrats to you both
Anri xx

Anonymous said...

So glad things are working out, and that the poop is flowing.I was sorry to hear of the problems and glad that they are well on the way to being resolved. Wishing you lots of poop and lots of sleep. He looks a lovely wee boy and toes I'd love to play with!
Great A. Kate

Chris and Prue said...

We were delighted to hear the news of Marty's safe arrival via Hamish & Clare but obviously concerned for the three of you re his current problems. He looks like a fighter so we are sure he'll be fine. Our thoughts and prayers are with you.

Chris and Prue

Dumblond said...

I'll keep my fingers crossed for your little man. He is so adorable!
If you all lived closer, I would recommend having my dad come and visit you. He is a poop magnet. Just hand him a baby and wham! Full diaper. He's got three grandkids and every one has pooped on him.
Have I mentioned how adorable Marty is?

Jennifer A.K. Harris said...

Ladies, Martyn is a doll! I'm so glad he's doing better and excited that he shares Emily's birthday, particularly since that means I won the baby shower poll ;-) You three are in our prayers for continued recovery...and some sleep.

Emily said...

This is random hello from one of Kate V's friends - I have only met you guys once or twice (at TEAR meetings in Hobart), but I've dropped by your blog occassionally and want to say congratulations - and good work on the breast milk front, you are definetly committed :)

Emily