Belated Thanksgiving

Thanksgiving was last Friday, November 24th in the US and lots of our friends here in the UK have asked me how our Thanksgiving was, to which I've replied sheepishly 'we ordered pizza'. Which is true. I barely have time to make porridge right now let alone a turkey but that's beside the point. I've been giving the wrong answer.

Our Thanksgiving was great, for so many reasons:

• We have Aaron. A year ago he was a squirming, kicking shadow on the ultrasound and now he's a crawling, giggling bright-eyed little boy who fills every day with joy - even when he's being a monkey.
• Aaron can see. We've been advised that his congenital glaucoma is a mild case, we caught it early and we have a progressive doctor who was able to do the full 360 degree trabeculotomy on both of Aaron's eyes.
• We have an incredible support network here and in the US, who are always available for coffees, wine, Facetime calls, and the odd meltdown.
• Aaron's care is covered on the NHS. I don't even want to think about what an operation like this would cost and the drops he gets every day aren't cheap either.
• The very fact that Moorfields exists. An entire hospital, just for eyes, so close to home and complete with an expert specialist in congenital glaucoma. 

The list could go on forever really, but I thought it was important to at least capture a few things we are especially thankful for here and now. Hopefully the next time someone asks about Thanksgiving, I'll remember more than what we ate.

We woke him up to take him to a Christmas tree festival. Look at his eyes! Wide open in such bright light.

Taking a break from crawling

Mummy's little turkey

Prepping for the EUA

With the EUA a little over 2.5 weeks away, we are trying to get Aaron ready. He doesn't have to do much except eat! 

Before the 360 degree trabeculotomy, Aaron was solidly in the 25th centile. He's been breastfed and was weaned at four months onto solids, which he took to really well. We were so excited to get him eating 'real' food and gave him broccoli, cauliflower, squash, green beans, avocado, banana, etc. Aaron ate whatever was on the spoon whether he seemed to enjoy it or not when we first weaned him and we thought, wow, this is so easy! 

Then we went to the States for two weeks. Then he caught a cold. Then he was diagnosed with congenital glaucoma and in our panic we stopped feeding Aaron solids for a few days (it seemed like a good idea at the time). Needless to say, when Aaron was weighed at Moorfields on the day of his 360 degree trabeculotomy, he weighed exactly the same as he had a few weeks prior. Doh. We slipped down to the 9th centile.

As soon as Aaron started feeling better post surgery, we steamed and pureéd everything Annabel Karmel told us to. We bought foil pouches to feed Aaron on the go. We flung, spat and smeared food. 

And we reintroduced formula. I'm neither for or against formula, I've just had so much milk that it made sense to breastfeed. However, at around Aaron's six month birthday I noticed my supply was dropping. I couldn't keep up with his needs anymore and the main goal is to keep him healthy, keep his weight steady and hopefully fatten him up a bit so it was a logical decision to switch (if not a sad and somewhat hormonal one).

When we had him weighed two weeks ago, Aaron was holding steady in the 9th centile and the health visitor wasn't worried, which is good. However, the poor kid will be starved on the day of the EUA and by the time he goes in he will have missed two feeds of solids and a few milk feeds.

Breastmilk can be given up until 9:30 on the morning of the EUA. We have saved some expressed milk in the freezer, really hoping that when we get our final instructions for the EUA that we will be approved to give him the breastmilk from the bottle! Otherwise, if memory serves, we have to starve him from 6:30 (??). Gah. Fingers crossed!

'Prepping' for the fast before the EUA

Updates: one month post 360 degree trabeculectomy

It's been a busy week! Aaron has learned to 'crawl' (mix of slithering and scooting) around on the floor so we are having fun chasing him about, plus he is scarfing down three meals per day so not much time for blogging. There has been progress though, a month on from the 360 degree trabeculectomy to treat Aaron's congenital glaucoma.

One month after the 360 degree trabeculectomy 

We had another good visit from the sensory support worker on Friday who was impressed with Aaron's ability to see, track and go after all the fun toys she pulled out of her bag. She felt that his development was right where it should be for his age, which is great news given that he's been through a major surgery. At this point there isn't anything she felt Aaron needed to work on with his vision as we don't have a proper diagnosis of what/how he actually sees so we won't be seeing her again until end of January once we have the results from the December exam under anaesthesia (EUA). However she said if he ends up with just a squint, we won't need the sensory support service which completely makes sense.

In terms of our own observations, there have been a few things lately:

Thursday we went to Bluewater, a huge shopping centre, and Aaron rode in his buggy sitting up with both eyes open and looking around. This was the first time in a very long time he hasn't had a tantrum when he's been awake in his buggy. Before the congenital glaucoma started affecting him, he loved a good buggy ride and would stare at the sky out his 'moon roof'. From September onwards he would only sleep in it and any exposure to sunlight would cause screaming. Since the surgery he has been even less agreeable about the buggy rides unless he's sleeping. Most walks lately have ended with me putting him in the carrier facing my chest and simultaneously pushing his buggy. I felt very encouraged by the Thursday ride even though it was indoors.

On Friday I took Aaron out in his carrier and he was facing outwards when we walked into a bright patch of sunlight (we were crossing the street, it was unavoidable unfortunately). I turned away from the sun as quickly but he didn't cry at all! I couldn't see his face so it's probable that he closed his eyes but still, him not screaming was a major milestone. We then met up with a friend who commented on how good Aaron's eyes looked.

We had another huge milestone on Friday in that it was the last day we had to give him Maxitrol (antibiotic/anti-inflammatory drops) four times per day. This is very happy news as we only have to give him drops two times per day now (Pilocarpine to keep the pressure under control). Between the drops, all the feedings and the general dislike of sunlight it has been tricky to leave the house lately. I'm hoping we are on the path to being about to get out more. Now to get him to the point where he can eat solids in public without getting puree on everything within a three-foot radius, ha ha.

A few of our favourite toys before the 360 degree trabeculotomy

It sounds a bit Captain Obvious to say that babies like things that light up and make noise (the louder and more hideous it seems, the better) - this is probably a given! However, looking back at Aaron before his surgery, he definitely seemed to ignore some of his toys that were less whizz bang and we think it's because he had a limited field of vision due to the cloudy corneas from the congenital glaucoma (we will never know for sure, even after the December exam under anaesthesia (EUA), as we've been told that thankfully the optic nerve can repair itself to a degree in babies).

If other parents or carers have children in situations similar to Aaron's, we thought it might be helpful to share which toys he enjoyed pre surgery. (I know in general Adam and I are always looking for new ideas to keep our little guy entertained.)

Please note that this post hasn't been endorsed by any medical professionals, sensory workers, etc. (nor do I work for any of these companies) and that every child is unique. The toys below are what Aaron best responded to before the 360 degree trabeculotomy and what worked for him may not work for everyone.

Lamaze rainbow glow rattle
We received this as a gift right before Aaron's congenital glaucoma diagnosis and he loved it straight away. It lights up in different colours and rattles plus it was easy for him to grip and chew on at five months old. He still loves it now (given the lights it's also a go-to toy for those middle of the night wake ups when he wants to play).

Bright Starts beaming buggie
Aaron really started to enjoy this most around four months old, which we believe is around the time his corneas started to cloud. It lights up in different colours and also plays music and ocean noises. This one came in super handy on the transatlantic plane ride! As an added bonus the wings also appear to be nice and chewy...

Fisher Price rainforest jumperoo
All the babies in our NCT group love the jumperoo. However, the light-up part with the brightly-coloured parrot and monkey was especially interesting to Aaron pre-surgery as he could really look down and focus on it.

Happy playing! x

Unplanned trip to Moorfields

So despite my best efforts to keep the faith this week, I caved and had to phone the doctor. Aaron's eyes had been tearing more than usual, a textbook symptom of the congenital glaucoma and I was convinced his pressure was sky rocketing. Also, his left eye has been red and has this goopy piece floating around. I did try and write it off. I showed a friend and my mother, hoping to hear 'oh it's probably nothing, don't worry' - but really who would say that about a six-month old baby who's just had eye surgery and whose eyes are visibly running? Of course we all agreed it wouldn't hurt to phone the doctor. Luckily the doctor agreed to see us in yesterday's clinic. Adam wasn't able to get out of work so I packed all the gear (the buggy, in case Aaron wanted to nap, the carrier in case he wanted to have a look around, the variety of toys to keep him entertained, the nappy changing kit, etc, etc) and set off to the station hoping we'd find a nice person to help me get the buggy up and down the two flights of stairs it takes to get to the platform.

We made it to Moorfields without a hitch and I managed to keep Aaron entertained while we waited but then I noticed we were both warm and wet. Naturally we had to go change our clothes right when we were due to see the doc but at least we didn't have to go into our appointment covered in wee (just covered in spitup as it were)!

The doctor checked Aaron's eyes while I sang Wind the Bobbin Up (!) and confirmed that the surgery is still successful and the pressure is down. The watery eyes are from the stitches dissolving and the red eye is party to this also - the gunky bit is mucous stuck to the end of a stitch. Yum.

I felt relieved to say the least. I was convinced the surgery had failed and poor Aaron was going to start losing his vision but thankfully he's fine! I will try and relax a bit knowing he's in good hands and in the meantime will stop trying to Google '360 degree trabeculotomy success stories'...I think the Internet isn't helping increase my sense of positivity which is ridiculous since the stories I'm looking at are about regular trabeculotomies and not 360 degree ones.  I still can't find anything specific to our surgery that isn't a medical study requiring a statistics textbook to help decipher but maybe that's for the best. Perhaps we are writing history ourselves when it comes to treatment for congenital glaucoma...?

Two weeks post trabeculectomy

Just over two weeks ago we turned our baby boy over to the team at Moorfields to perform the 360 degree trabeculectomy* for Aaron's congenital glaucoma. Aside from a bit of redness and the eye drops we have to give him four times per day, you'd never know he's had surgery! To give you a better idea of Aaron's journey we've gone from:

2/10/16 - three weeks before surgery

28/10/16 - one week after surgery

6/11/16 - two weeks after surgery

He seems to be getting better every day, thankfully! Bouncing around, trying to crawl and just generally being super cute :)

That said, I still worry about every little symptom, things like:

• He's still sensitive to light. Not as bad as before but is this normal? Will it always be like this?
• His eyes tear up sometimes. Again, is it normal? Is it recovery from the surgery? Is it because we're running the heat now and sometimes the dehumidifier?!
• Eye boogies. They're white and not infectious looking (gross, sorry) - and infrequent. I have eye boogies, I'm assuming babies just get them?
• His eyes are still large. Are they meant to go down in size or will they stay big? Does he just have big eyes generally?!

Trying not to be a neurotic mom that calls up the doc every time I notice something, just paranoid about his eye pressure going back up or of him getting an infection. Surely his corneas aren't going to cloud up over night and I'll miss it and he'll be blinded for life? (right?!)

It's really hard because even though babies don't come with a manual, they at least come with friends who've had babies who can give advice, an NCT group (here in the UK anyway) and failing that the good old Internet (Mumsnet, Netmums, What to Expect, etc.) has plenty to say. Not all of it is accurate or appropriate but that's beside the point - there's tidbits to feast on and draw one's own conclusions.

The tidbits I've found to feast on for primary congenital glaucoma with infantile onset (the proper name for it, if you really must know) treated with a 360 degree trabeculectomy are things like this:

Surgical outcomes with 360-degree suture trabeculotomy in poor prognosis primary congenital glaucoma and glaucoma associated with congenital anomalies or cataract surgery

Reduction of Intraocular Pressure Using a Modified360-degree Suture Trabeculotomy Technique in Primaryand Secondary Open-Angle Glaucoma: A Pilot Study

On the one hand I am grateful there's anything at all to read. On the other hand, you try reading that on three hours sleep with the Fisher Price Roarin' Rainforest Jumperoo bleating in the background. Oh and do it on your iPhone just for giggles. ;) 

*I've seen trabeculectomy/trabeculotomy spelled both ways. Which is right? Is one American and one British? Our doc spells it trabeculotomy

Sensory support

Whilst we were at Moorfields two weeks ago for Aaron's initial consultation and the 360 degree trabeculectomy, we also met with a sensory support worker who referred us to the team in our local borough. I received a call on Monday this week from the local team and she explained the realm of the services available to Aaron and for visually impaired children, everything from a sensory room to the ability to have someone come with us to key hospital appointments. Amazing. We talked about Aaron's congenital glaucoma, the trabeculectomy and its results, our next appointment and the topline diagnosis regarding the right congenital squint.

She arranged to come and meet Aaron today and arrived with a Mary Poppins-style bag of goodies to see how Aaron would react (ok it was a Tesco bag but it was full of magic). Among the things she pulled out were:

• A poofy ball of orange yarn, which Aaron tracked with his eyes and tried to eat
• A foil survival blanket, which Aaron grabbed, yelled at (!) and tried to eat
• Numerous light-up toys that whizzed and changed colour - you can guess what he did with these

She was impressed with Aaron's ability to roll over, push him self up and attempts to crawl and told us that children with visual impairments don't usually do that because they literally can't see any reason to. She said that she has seen older babies that don't move as much as him! Aaron has always been pretty active, even when the congenital glaucoma must have been at its peak and his eyes were really cloudy.

She was also impressed with Aaron's ability to read facial expressions, even from across the room. Although weekly visits are part of the service, given how well Aaron is doing right now we won't see her again for two weeks and then we'll assess from there how frequently she'll come to see us.

All in all it was comforting to see her reactions and get some reassurance that he's doing well. December is a long time to wait to see the doctor again!