Unlike Stevie Wonder, she can see!!

On Thursday I took Katilyn to UC Berkley to the very specialized Low Vision Assessment clinic. Special Visual Assessment Clinic for the Handicapped (SVACH)

She again saw: Deborah Oral-Bixler

As a reminder, Kaitlyn had level 3 ROP in the NICU and had laser surgery to stop her retinas from detaching. (Stevie Wonder is blind due to ROP)

This appointment was long-in-coming.

Below I'll recap of a conversation I had months ago with our insurance company:

But before I get to that I had to write about my experience of being on a college campus, again.

I of course double duty tasked and pumped on the way to UC Berkely. The old "Pump and drive". I'm getting over the fear of other drivers looking over at me, Who cares. I don't have the time to pump any other place, so I often pump and drive.

Upon arrival at the campus - Wow, did I feel old, really old. I was late (what a surprise) it was raining and I couldn't find the correct parking lot (as the lot that for the clinic that I used last time is under construction after the long crazy protesting tree-sitters finally were removed. I parked way too far away and found myself trying to negotiate a stroller on a college campus in the rain feeling really, really lost and out of place and running late.

It was a blast of reality of how much my life has changed since I was a college student at UCSB (UC Santa Barbara). Wow, did I feel old. I had to ask a number of co-eds how to find the building I was supposed to go to. I certainly was the only one pushing a toddler in a stroller. I wondered what students thought as they saw me, a mom pushing a stroller. One girl helped me to carry the stoller down some steps that didn'g have a ramp. I ended up right in the university center square. I didn't feel "old" before going on campus, but here I was pushing a stroller around a college campus feeling ancient. I graduated from college when I was 22, and that was 20 (TWENTY) years ago! Oh My God. 20 years.

Anyways, sorry for that little lament.

Here's the conversation I had with my insurance company/case manager.

Me: "Kaitlyn needs to have another eye exam, as she holds paper about an inch from her face in order to see close-up, she also looks over the top of her glasses."

Our current Opthomologist has said everything fine. But to me, everything isn't fine, why is she looking so close at things. We would like to go back to the UC Berkeley center where she went (and you paid for) over a year ago."

Them: "well, looking at Kaitlyn's history, it looks like her Opthomologist (Dr G) didn't' dilate her eyes in order to do the exam"

Me: "they've been dilated in the past, but I don't really think that's the issue, I would like to get a 2nd opinion"

Them: "the last time she went to UC Berkeley, it was "just" an optician appointment and an opthomologist appt would be better for a 2nd opinion"

Me: "no, we need to go to UC Berkeley, this isn't' a regular optician appt, this appointment is almost 2 hours and includes attaching electrode stickies to her head to see what she is seeing among a lot of other things to check a child's vision"

Them: "no that's out of network, she'll be better off at an opthomologist anyways, as they are more advanced than an optician"

Me" Again, the appt at UC Berkeley is a very specialized Low Vision Assessment, supposedly one of only a few in the country for children, we need to go there."

Well, to make a long story short, they never approved it (even though approved the first visit over a year ago). I gave up on trying to explain why this place was different then what everyone else did. BUT our wonderful local school district has a donor that will pay for children to go to the vision assessment at UC Berkeley, and we just went on Thursday.

They determined:
1. That her left eye has a small amount of peripheral vision loss (common from ROP surgery)

2. That she has limited depth of field (which might account for her stumbling when objects are similar in color, but not for tripping over objects that are very clear).

3. That her vision is about 20/50 at this point, and the reason she looks so closely at items is that her vision is good close up, if she's holding something just a foot in front of her (esp without her glasses) it's very blurry. (-4.5). They didn't see any cause for alarm for it. As she gets older, her vision may still get worse and she may likely need to be at the front of the class or have large print, but at this point, they are happy with what they say (resolved ROP).

After children have ROP surgery, it can still happen that their retinas detach, but the surgery that is being done now is so much better than ROP a number of years ago where they froze the retinas which caused serious long-term scaring. They can see the scars on Kaitlyn's retinas, but they aren't concerned at this point.

All-in-all, well worth the visit and the wait.

Kaitlyn's eyes are really very good for having serious ROP and we are very thankful. At this point she won't qualify for vi son services through our school district (a good thing as far as I'm concerned!)

Did I mention in the past that I found THE PLACE to get eye glasses online? (adults and children)

Wow, what prices! http://zennioptical.com

Drugs and update

Today I'm 34w4days

I thought this was a fitting title for today's blog.

I recall thinking this same thing the last time I was in the hospital on bedrest: Here you go your entire pregnancy trying to be so healthy for your unborn child and be free of anything that could be harmful for them . But once you find yourself in the hospital every thing changes:

-Lets see, when I was admitted at 30weeks I was given to doses of Bethamethasone (to help speed up the babies lung development).

-Being in the hospital is so crappy that you NEVER get any sleep so they give you Ambien to help you sleep. (everything from the uncomfortable bed (with rubber mattress that I ask the nurses to cover in multiple layers) to the constant interruptions (blood pressure, contraction monitoring, heart rate monitoring, temp, time for meds, etc)

-Because you are never moving you become extremely constipated so you get Colase to help soften your stools.

-Because I'm having conctrations, I'm getting: Nipedifine which is giving me horrendous headaches, and lowers your blood pressure (not as bad as when I was on Magneisum sulfate prior pregnancy) but not good, supposedly the headaches are supposed to get better..

-To combat the Nipedifine headaches I'm taking Tylenol.

-The artificial environment/air conditioning is making my nose super dry and bleed and giving me allergies, so I'm taking Claratin.

-The 24/7 monitors on my belly give me a horrible, itchy rash on my belly, so I'm putting hydrocortisone on my belly.

Sheesh!

Kaitlyn at home 2 days before I was hospitalized. Such cute pictures I had to post them.

She LOVES her blue twin backpack that my friend Lisa (with 2 sets of twins) gave her as a gift

When Brian and Kaitlyn come to visit, we "tour" around the hospital in a wheel-chair, which is the only time I leave the confines of my 4 walls in my room. Last time, we went up to visit the NICU, this was taken right in front of the NICU.Here is one of our favorite NICU nurses (Mary) in front of the NICU. She was there when my girls were delivered and was amazed to see Kaitlyn and how blonde her hair is. Remember in the NICU at birth Kaitlyn's hair was very, very dark
Back in my room, Dad feeding Kaitlyn. 2 nights ago she had such a huge vomit, dad was amazing though as he caught it in his hands!
Looking for anything to entertain Kaitlyn, here she is playing with rubber gloves.

Finally belly shots. These were taken at 34w1d. See the red rash on my lower belly. Once again the monitors give me a horrible rash.

Look at that beautiful 34w1d belly! Wish I was out and about enjoying my beautiful pregnant belly. Nope it's just me and my 4 walls (and my blog readers of course!)

Pregnancy Updates:

Well, my contractions have been increasing, so they've increased my dose of Nipedifine, to keep the contractions at bay. The last 2 nights the nurse has come into wake me up to make me empty my bladder, hoping that would decrease my contractions. Last night when I did that I had a small bleed, which of course made me a nervous wreck, thinking "this is it", so I could hardly sleep, but thankfully it seems to have stopped once again.

The goal now is still to try to get me to 37 weeks, (a minimum of 36 weeks), it all depends on my placentia behaving. Hopefully Baby Boy McCarthy will stay off it as that will help as well as keeping the contractions at bay. They are non-painful contractions, but they can still lead to more bleeding so it's important they ate stopped.

I've had to have a continuous IV port (hep-lock) in my arm just in case I start to hemorrhage and have to go for an emergency c-section. However, they've had some problems, and my poor veins are about all used up. I begged and pleaded and am now hep-lock free, so last night when I started bleeding I of course was a bit freaked that I didn't have my IV port in and that I should possibly call to have them put one in if I was going to start to hemorrhage. The issue I guess is that if i do hemorrhage, it makes all your veins really tough to access (as you are loosing too much blood). I'm just hoping at this point that it's not going to happen.

2 days ago a fellow hospital "inmate" was rushed up to an emergency cesction due to bleeding from a previa. I never met her (you never meet the other women who are as lonely as you are, which is ridiculous). She and baby are ok I heard, but it hit home that this is where I'm supposed to be for the safety of both me and baby.

I'm going stir-crazy, am tired of the food and some days am really down, but basically I"m just trying to count the days and knowing how much better things are this time around really helps a lot. Just knowing that I'm going to hear Baby Boy McCarthy scream when he comes out does a lot to help!

Bed-rest is hard. Hospital bed-rest is really hard. If you know ANYONE going through it, just stop by for a visit. having someone to talk to from the outside world really helps pass the time. My friend Lisa has been awsome. She actually spent 9 months in the hospital with her first set of twins, YES, 9 months and yes she has 2 sets of twins. If she could do it I can, she's been by so many times to visit, as she knows how hard it is. Thank you Lisa! You are my sanity savior!

We do have a name picked out finally! As I was in the OB triage on Monday and Brian got here we figured it was time to name Baby Boy McCarthy. But that's a secret until his arrival. sorry you'll just have to wait!

When Kaitlyn leaves she breaks down crying (remember that Kaitlyn hardly ever cries). It just tears my heart out. She doesn't understand why mom can't come home with her. It's breaking my heart that I can't take care of my own child. It's been a month now. My nanny and husband are doing all the work. I feel helpless and sad. But I'm just trying to let the "worry" go and take things a day at a time, as there is nothing I can do about it and I know Kaitlyn is in really good hands.