Patch Update

by Kayte

After our initial misadventure with the sticky eye patches, Lola and Max have adapted quite well to the fabric patches. The kids wear them for an hour each day during TV time (a good motivator) and sometimes Max even keeps his patch on for longer (up to two hours). I wonder if Max’s glasses are helping his vision more than Lola’s, because he is much better about keeping his glasses (and patch) on consistently throughout the day. Either way they’re both still doing better with glasses than I ever hoped two four-year-olds would do, and I’m hoping for a good report when we go back to the ophthalmologist in June. I never asked how long he anticipated the kids needed their patches (months, years?), so I guess we’ll find out then.


Preschool Pirates

by Kayte

Lola and Max had their two-month followup with the eye doctor to see how the new glasses are working out. The doctor was very happy with how both kids were seeing with their glasses; he said Lola even scored better on her eye exam today than back in December. The doctor did recommend that we patch both kids’ left eyes for 1-2 hours a day to help strengthen their eye muscles. Thank goodness it’s the same eye for both kids because I have a hard enough time keeping my rights and lefts straight. Lola’s patch is for amblyopia: her vision in her left eye is much better than her right, so the patch gives the right eye a chance to get stronger. In Max’s case it is strabismus, or cross-eye, and again the patch gives the right eye a chance to get stronger.

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There are three different kind of patches for kids: a band-aid-type patch that sticks on to the skin around the eye, the traditional pirate patch, and a piece of fabric that fits over the eye glasses. The doctor gave us some of the sticky-type patches for now, and boy those did not go over well! They’re supposed to be good for littler kids who won’t willingly keep the patch on, but Max and Lola were not happy about it. I ended up just sticking it on to the lens of their glasses for today. I’ve ordered some of the fabric patches which I’m hoping will be more comfortable, and in the meantime we have some pirate patches in our dress-up box that will do the trick. Arghhh!

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Specs

by Kayte

So far so good with the glasses. They have remained intact, unscratched and [mostly] un-lost, though they do get completely filthy on an hourly basis. The kids are both pretty good about leaving them on most of the day, though understandably they do need to take breaks (Lola more so than Max). It’s only been two weeks of glasses-wearing and I already think the kids’ faces look “naked” without their specs. But now I have a new photography challenge working around the glare of those lenses…hmm. 


Eye Glasses

by Kayte

We requested an early discharge yesterday so we could make it to the second opinion eye appointment we were able to schedule with our old ophthalmologist on just two week’s notice. It was a crazy day – Lola and I left the hospital, drove home to pick up Max and daddy, then drove to the eye institute where the appointment of course took hours. We didn’t get home until late, exhausted, where whe still had to fix dinner, administer antibiotics and do breathing treatments (times two). 

The doctor yesterday confirmed that both kids need glasses, not necessarily for vision (which was the same or better than six months ago), but to correct alignment issues. Max needs glasses to correct his deviation/eye crossing, and the doctor thought that Lola would benefit from them too since one eye is slightly stronger than the other, although he was on the fence and felt she could have gone either way. He gave both kids a much milder prescription than the other doctor, and didn’t agree that it was such an urgent matter. It seems that the difference is a matter of approach; the doctor two weeks ago read the kids’ prescription with a machine while their eyes were dilated, and wanted to give them the maximum technically allowable correction. Yesterday’s doctor took a minimal approach, giving the kids just enough prescription to correct their alignment based on what they could tolerate. To demonstrate, the doctor had the kids try to read the eye chart with the old prescription and neither of them could see a thing – it was way too strong. Theoretically their brains may have adjusted to the stronger prescription after some time, but I doubt they would have been able to wear the glasses long enough to find out. We may need to increase their prescription over the next few months as their brains/eyes adjust, but I think we have a much better chance of them tolerating the glasses with the minimal prescription.

Even though it wasn’t urgent, we took the kids to an eye glass store today to get the ball rolling (especially since family is flying in and things are going to get crazy with the holidays). Lola picked out a pair right away and hers will be ready tomorrow. Max wanted black frames (like daddy’s) which won’t be in until Friday, so we’ll have to go back for his then. 


Stein Eye

by Kayte

Max and Lola got their eyes checked at UCLA today. They are both farsighted (Max 20/30 Lola 20/40) which is normal for their age. The doctor noticed a slight deviation in Max’s right eye when he is looking at something far away and his left eye is suddenly covered. (When asked if I had ever noticed this before: umm no I don’t normally cover up my kids eyes at random times during the day?) The deviation can indicate that the brain is not marrying the individual signals from each eye to form one coherent image (aka depth perception) and can be corrected with glasses. However the deviation was within a normal range and Max’s depth perception checked out fine so we’re good for now. The doctor recommend that we get Max’s eyes checked every 6 months. Lola’s eyes checked out perfectly and she doesn’t have to go back for another year.

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In other news I kinda sorta fired our eye doctor today. We like him just fine, but it’s a long drive to UCLA, the wait times in his office are usually terrible, and they’ve cancelled and rescheduled appointments more times than I can count. Today’s appointment was supposed to be our 6-month checkup last Fall which was cancelled and rescheduled so many times it became a year checkup instead. I wasn’t sure if we were getting specialized treatment at UCLA because of their preemie history or if it was just regular eye exams, but the doctor confirmed they were just regular eye exams. Luckily he was super nice about it and totally understood; he even gave us the names of a couple doctors closer to our house that we can use instead. It will be nice to not have to make appointments six months out now.


Vision Test

by Kayte

Max and Lola had their six-month eye exam today. Everything still looks good. Both kids are still farsighted, which is normal. Max is a little more farsighted than Lola, but Lola has a little more variation between the two eyes. Everything is still within normal range so we’ll check back in another six months.

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Today was the first time Max & Lola participated in their eye exam. Up until now the doctor has just been measuring their prescription. But this can be different from how your brain perceives what the eyes are seeing. Today the doctor had Max & Lola read an eye chart. Instead of letters there were simplified, black & white symbols. Max did great and was able to test up to 20/80. Lola got a little fidgety halfway through and did NOT want one eye covered, so we stopped at 20/125. The doctor gave us the chart so we can practice learning the symbols for next time.

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It was interesting how each kid correctly, yet uniquely, identified the symbols. Max replied “cake” while Lola said “candles.” Max identified a “hand” whereas Lola saw a “glove.” Pretty cool.

Again, the wait at this office is CRAZY. We were there for a full three hours for (2) 15-minute appointments. Ugh. Every time we’re there I say we’re going to switch doctors. But then the doctor comes in with his pediatric expertise and I wonder how many other ophthalmologists specialize in preemies…I guess we’ll stick it out for now.


Waiting Room

by Kayte

Lola had her 6-month eye exam today. Everything checked out great. Her retinas are stable, the optic nerve is healthy and her vision is clear. The doctor also thought Lola’s upward-looking range of motion was improved. Although this was a subjective observation, it’s important because increased pressure on the brain can cause eyes to sunset downward, so she’s continuing to improve even a year past her last surgery.

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The only bummer is that we always have to wait forever at this doctor’s office. A 15 minute appointment takes two hours. At least they have a fun waiting room for the kids.

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Retina Specialist

by Kayte

Lola had a follow up appointment with the retina specialist who performed her laser eye surgery. They want to see her every couple years to make sure the blood vessels aren’t expanding past the laser point. I had Park City flashbacks wrangling two toddlers in the waiting room for over an hour for what ended up being a two-minute visit with the doctor. But the good news is Lola’s eyes look great and we don’t have to go back for another couple years.


Eye Doc

by Kayte

Max & Lola had their six-month eye exam today. Everything went well, other than the fact that the doctor was running SO far behind that we were there for three hours. The babies are so mobile these days they are NOT content to sit around in a waiting room like they used to. Good thing our doctor visits are getting less frequent.

Max is still a little farsighted which should improve as he gets older. We only have to worry if he starts going severely cross eyed. They don’t need to see him again for a year.

Lola’s eyes were also good. She has a little variation in her optic nerves which is common for hydrocephalus babies (because of pressure buildup) but everything is within the normal range and her eyesight is good. They’re going to continue seeing her every six months due to her more complicated history.

No glasses yet!

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Eye Exam

by Kayte

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We found ourselves back at UCLA today for Max & Lola’s 6-month eye exam. We got good reports. They are still far-sighted, which is normal at this age and should improve. No glasses for either one (yet).

Lola still has an astigmatism, which is only a concern if the two eyes vary enough to cause overcompensation (they don’t). Lola’s retina and optic nerve also looked good – the laser surgery appears to be a complete success!

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Ophthamologist

by Kayte

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Max & Lola had a routine (for preemies) eye appointment today. All the oxygen support that kept them alive can have an adverse effect on the eyes. Everything in medicine has a risk with the benefit. The effect on the eyes is directly related to the O2 saturation in the blood. Hospitals used to pump preemies full of O2 at 100%, but as the babies were followed into adulthood they literally went blind. Now the hospitals monitor O2 saturation closely and keep it in a “safe” range of 88-95% to try to balance the risk and benefit.

There’s a very good probability that Max & Lola will need glasses later on (who doesn’t nowadays), but today they checked out okay. They are both farsighted which is normal for babies this age. Max was on the higher end of normal farsightedness, and Lola has a more pronounced astigmatism, but overall the doctor was happy with the health of their eyes. Especially in Lola’s case since she had the ROP surgery. We’ll follow up again in another 5 months to see how everything is progressing


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Eye Doc

by Kayte

Max had his last visit with the ophthalmologist today – all clear! No surgery. The next checkup is just a regular old eye doctor visit in February. One doctor down…


Laser

by Kayte

Lola’s laser eye surgery went well today. They were able to do the procedure bedside with just a mild sedative. No intubation. She’ll be in the hospital until at least next Tuesday for her follow-up eye exam to make sure they got it all. She took a huge (80cc ~2.5oz) bottle this morning and slept most of the afternoon. She woke up starving just before the procedure but was NPO (no food) until after surgery.

Max’s big change today was with his feedings. The doctors think he’s not showing enough interest in nippling for being 40 weeks gestation. They’ve now spread his feeds out over four hours instead of three to let him get hungrier and hopefully more interested in taking a bottle. They’ve also ordered that he be given his pacifier during gavage (tube) feedings to make the connection between sucking and his tummy getting full. Lazy white boy…


Retinopathy of Prematurity

by Kayte

Lola had her first eye exam today. At a month old they check for something called retinopathy of prematurity (ROP) that can occur in premature babies (especially those that have been on vent/O2 support since high oxygen saturation is bad for eye development). It’s a condition has to do with the abnormal growth of blood vessels and can cause retinal detachment or blindness if left untreated. It can be corrected with a laser eye surgery that they can perform on babies this small (modern medicine is incredible). Lola’s first exam showed mild signs of ROP (1 on a scale of 1-4) that often corrects on it own. They will do weekly eye exams to monitor the ROP and, if it gets worse, they will perform the laser surgery. Max should get his first eye exam soon too – they held off when he had the infection but that’s clearing up now.

Lola handled the exam very well. It’s fairly invasive – they actually wouldn’t even let us watch because it looks so torturous. They give the baby drops to dilate the eyes, then have to hold the lids open with a speculum for several minutes while they look inside and take pictures. Lola didn’t brady or desat hardly at all. Afterwards her poor little eyes were a little swollen and she was having some brady desats which is normal. They were going to let her recoup the rest of the day.

Last night Lola vomited (emesis) during a couple of her feeds. They thought it might be an adverse reaction because her stomach is so small, so they kept the amount the same (15cc) and increased her feed time to an hour instead of 20-30 minutes. She handled the daytime feeds better so hopefully no more incidents. They continue to wean her vent settings and she’s doing really well. Chest x-ray today looked good and stomach x-ray also good. All vitals stable – we’re not used to the monitor being so quiet! They may do another tap in the next day or so.

Max was having a good day. He still has bouts of apnea and bronchospams, but they seem to be getting less frequent and less severe. He’s able to bring himself out of them on his own sometimes, so he’s learning and getting stronger. They increased his feedings back to 15ccs so he and sister are getting the same amount. Half an ounce each every three hours, eight ounces total per day. They stopped his eye drops since the eyes are looking better but are keeping him on IV antibiotics for 7 days to ensure the eye/nose infection doesn’t spread to the lungs. After the stomach distention they switched his diurel (oral diuretic) back to lasix (IV diuretic) so as not to overload the tummy. Chunky monkey weighs 4lb 6oz now – double his birthweight!