Isaak Had a Contact Lens

Yes. Had.

He's lost it already.

Where?

We don't know. It's even possible the thing is still in his eye and we just can't find it.

Why does he have one, you ask?

His left eye is now aphakic, that is, missing the lens. You may recall it was removed during the retina surgery in December 2010. The only way to reasonably correct aphakia is via an intraocular lens replacement or by wearing a specially designed contact. Isaak is too young for a new lens due to his still growing eye and an increased risk of scar tissue. So they gave him an extended wear (7 day) contact.

And he lost it.

Before 24 hours were even up.

He had it when he went to bed, but it was gone this morning. We guess he just rubbed his eye randomly and popped it out. We looked in the bed, in the blankets, in diapers and on the floor all around. Did he eat it? Did he throw it out of the crib somehow? Or, it it really still in the eye somewhere? His eye isn't tearing and he doesn't seem to be rubbing it a lot but does seem kind of cranky and clingy today, according to Mom.

Did I mention these things cost $260 a pop. For ONE contact lens.

Clearly he will need to be trained.

Outside of the saga of the contact lens, his followup yesterday was very good. The main reason for his visit was to make sure the pressure was acceptable in the left eye after being off Azopt for 36 hours. It was in excess of 40 just 3 weeks ago. Yesterday, it was 9 (under 20 is normal).

Penny also had a 6 month checkup and here eyes look fantastic. No need for an exam under anesthesia for her. The only issue she has to track is very very mild veiling at the outer edges of her retinas. Leftover artifacts from the RoP. She'll be seen in a year. Way to go little girl.

Isaak Eyes and Frustrating G-Tube Stomas

Little guy went to Duke Eye Center on Friday for an exam under anesthesia (EUA), and the news was better than expected. I'm not sure we've been able to utter that phrase in relation to Isaak's vision in quite awhile. We were very worried about the possiblity of glaucoma surgery due to elevated eye pressure at his last checkup. After 3 weeks of drops, his pressures were well into the normal range, so no surgery was necessary. We keep him off the drops this weekend, and they will re-measure on Monday to see if he needs them or not.

In other good news, the retinal fold is beginning to flatten and the macula is actually moving back towards the appropriate location. Now, this doesn't mean that lost vision will be returning, but it does mean that the danger of additional vision loss has abated (somewhat, for now). Scar tissue is still present, but doesn't appear to be expanding. This is important as the scarring is what caused much of the tension on the retina and created the fold.

There are small fatty deposits on the retina, called exudates, that are likely a result of the massive hemorrhage Isaak experienced last July and continued bleeding afterward. This hemorrhage was the proximal cause of many of his vision complications and the advanced RoP. Nothing that isn't experimental and potentially damaging can be done about them, so we'll just be hoping they don't grow any more.

He goes in Monday for a followup to the exam and to be fitted for his contact lens. If you recall, the surgeons were forced to remove the lens from his left eye to carry out the retina surgery. This contact will help the eye regain some it's ability to focus.

His right still looks perfect. Thank goodness for small gifts.

Penny (yes, she is still around ;) Also has a date with Duke on Monday. It's been a few months since she had her last eye exam, and we want to make sure nothing untoward has occurred since then. If her eyes still look great, she'll just be on a yearly exam schedule.

Isaak will have another EUA in late summer and may very well have one annually for a while.

In news of a more frustrating nature, Isaak's g-tube site has remained stubbornly open. We've been dealing with a leaking, hissing tummy for two weeks now. For some reason, UNC did not schedule an OR date in case the stoma did not close and so it will be Thursday before Isaak finally has the procedure to do so. 3-4 outfit changes per day plus innumerable quantities of pads, gauze, tape and protectant ointment have been consumed and quite a bit more will be prior to Thursday.

We only hope there hasn't been tissue damage around the site from stomach contents leaking out.

Ding-Dong, the G-Tube's Gone!

Yes. Yes. You aren't seeing things - this *is* the third post in March.

Oh, you meant the headline? (Of course you did!)

This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!

This was/is very exciting.

It's also very messy.

You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...

The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...

In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.

In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.

There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)

I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.

What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.

Yes - We ARE still kicking

No, we haven't been ignoring the twins' adoring public.

Yes, we have a few quick updates!

It's really incredible how busy life is with these little guys. They take so much time and energy and we have to sneak in regular life events at the same time.

Isaak has been doing really well post eye surgery. The two week check-up indicated that his eye is not worsening, which is all we can ask right now. He has elevated pressure in the left eye and is getting drops for that and he'll be on steroid drops for another week or so.

He had another positive visit with the GI doc. His continuous feeds are no long 24 hours, but 16, meaning he has 8 hours a day connected to nothing! That was a fantastic Christmas present (one we got on 12/27, but close enough to count). You can believe we are taking maximum advantage.

Having children around as well as Nana and Papaw and Auntie Amanda and Uncle Philip made it a very special holiday. It could only have been better if Grandma and Grandpa could've made it too. Next year will be oh so much fun as they will be big enough to be tearing around the house (and tearing through the wrapping paper).

I promise we'll have some photos and video up soon. In the meantime I will leave you with this parental nugget: An LED maglite is a *great* distraction in a car with screaming babies at night. Maglite FTW!

Arrrrrrr, matey...or what the &?#! is on my eye...

Isaak's surgery, besides being SIGNIFICANTLY more involved than we had hoped, went pretty well. This is little guy on Friday when he came home. He was grumpy and mostly very sleepy as the anesthesia worked it's way out of his system, but overall well behaved.

He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.

So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.

Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).

Thursday is the follow up appointment at Duke and we'll see where we go from there.

Isaak and the Big Field of Vision

A quick couple of links that I've found helpful in understanding Isaak's vision loss.

The first is from Wikipedia and shows photos of visual field loss.

Second is a vision field test from St Paul’s Eye Unit, Royal Liverpool University Hospital.

Lastly, a graphic from Brown University.

Depiction of Visual Field from Brown University