The Big Day - 1 Year Later

So this is it. The end of one short saga. The beginning of an odyssey.

At 6:35am on April 30, 2010, I made this short and to the point entry:
http://olliestale.blogspot.com/2010/04/bekka-back-for-c-section.html

Less than 2 hours later, it was "over." And it was just starting.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html

That evening, we actually had time to think and compose a longer entry. I'm not sure how I managed to make it sound so "together" and functional. I think my engineering brain just turned on at some point during that day and pushed me into clinical mode. That allowed me to step away from the abject terror lurking deep my id.

http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html

We can't give enough credit to our "hosts" at WakeMed. Prior to, and just after the delivery, their calm professionalism kept both of us focused and while frightened, also hopeful. We aren't exactly easily rattled people, but this wasn't exactly a normal situation.

Perhaps you might want to go back and revisit photos of that first week just to get an idea of what we were dealing with. When you can see more medical equipment than the skin of the little person in the incubator, it doesn't create a particular sense of comfort. Also it doesn't help that they looked a bit (or a lot) like ET when they were born.

As tense as that morning was, to my dying days I will remember Isaak opening his eyes at the sound of my voice in the post-delivery room. He was lying there with an oxygen tube in place and in a plastic sandwich baggie for warmth (not really, but that was what it looked like). And at the first sound of my voice, he cracked his eyes. 

Amazing.

We owe a lot to so many people. Doctors, nurses, family, friends....

Thank you all for a brilliant first year.

The Contraction Countdown

We didn't know it, but the afternoon of April 29, 2010 saw contractions beginning that heralded the arrival of our children. We'd seen this show before as can be noted in the first post:

http://olliestale.blogspot.com/2010/04/contractions.html

A few hours later, Bekka was still experiencing contractions and the growing concern is evident in my post. I sounded calm, but I think we both knew that this was going to be "it".

http://olliestale.blogspot.com/2010/04/contractions-update.html

Sometimes I think life throws things at our family more like Phil Niekro. A nasty, wobbly knuckleball that approaches the plate with agonizing slowness. You can't hit the thing because of it's random motion but you have to wait and wait for it to get there. Often I think the more predictable Nolan Ryan fastball would be far, far preferable. It may come at you at 100mph, but at least it's over with...

A Year Ago Today...

A bit late on the post today thanks to a pre-6am start at work and traveling all day.

Last year at this time, we actually thought things were going pretty well. This post classifies the day as boring...wish that had lasted! Tomorrow would be when the excitement began - slowly at first, but then building.

http://olliestale.blogspot.com/2010/04/25-weeks-1-day-and-some-sweet-sweet.html

Today is the day that Ollie died. Not the date of course, but the relative time to his birthday - 2 days before. I've become increasingly anxious as we have approached this 1st birthday milestone with these little tykes. Today I'm glad that I was very, very busy and did not have time to ponder. Oliver didn't get to see his first birthday and all the cool birthday favors we had for him...he didn't get to see anything else after that day.

Saturday will be wonderful and uplifting. It will also be bittersweet. I feel bad about that for these little guys.

We'll love them, and squeeze them and look for butterflies.

Last Year at this Time

A year ago we were at WakeMed in Raleigh, cautiously hoping that we might make it a few more weeks before getting to meet our children. Alas, that was not to be and very shortly our epic saga of preemie parenting was about to begin. Over the next few days, leading up to the twin's first birthday (!?!?!?!?!) I will post links to the post from the same day last year.

It's a fascinating experience and I almost feel disembodied reading my own words. The stories over the last year have been harrowing, joyful, volatile, cute - you name it. They (thankfully) don't carry the same emotional land mine triggers that re-reading Ollie's story so often reveals, but the memories are intense.

Last year on this date, we actually had a post from the lady herself. Without further ado, here's a rare update from Bekka (she was kinda busy at the time - lying down - but busy):

http://olliestale.blogspot.com/2010/04/quick-updatefrom-bekka.html

Feel free to browse back to the beginning of April for more of the insanity.

If you are reading this, it is way too early in the morning...

...and Isaak is on his way to get his stoma closed. Finally.

His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.

Thank you! Your diet Cokes have chilled overnight in the fridge.

As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.

Found It!

Mommy happened to catch a glint on the kitchen floor. An area that had been gone over in great detail several times today. Our only thought is that it popped out somewhere, somehow or maybe had gotten stuck on his high chair this morning.

We have no idea if it has been out in the open air long enough to be unusable. Bekka cleaned it and we are going to let it sit in solution overnight.

Anyone know if they make RFID tags small enough to fit on a contact? This could be a challenging issue.

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.

A Note on Videos

So apparently PicasaWeb is bad for videos.

Very bad.


See update for details.

I didn't verify the green bean video upload last night, and checking it out today, I've found that the audio is very choppy. Apparently this is a known issue when uploading higher quality video.

A search of the Google forums suggests that the solution is YouTube (way to go Google!), and I'm going to do what anyone with really cute twins would do and upload all the videos there. This makes sense in a lot of ways as YouTube is designed to handle big HD files like I'm producing and is also much much more easily accessible from mobile devices. We've wanted to show videos several times on phones and haven't been able to get Picasa to work so this will take care of that.

I've just started the upload process of the 4 videos currently on the website and hope it will finish overnight. Once they are up, you can access them via the channel I've set up at the following URL:

http://www.youtube.com/user/sooner1997

We will also create a link specifically to go to video from the front-page of the blog.

All the photos will still live at the PicasaWeb site as it is by far the best I've used for photo purposes. So follow the above link sometime in the morning and see what is to be seen in video land. I've made the vids public for the moment, but we will see how that goes.

Thanks for your patience.

UPDATE:
Everything should be up and running on YouTube now. Some of you may have tried the green bean video this morning and discovered that it was still choppy. Turns out the issue wasn't really with PicasaWeb (as YouTube and PicasaWeb are both owned by Google and appear to use the same rendering engine) but with the way Google deals with the uploads of AVCHD files and certain settings in those files. Essentially, the file was being doubled in length and the audio was being chopped up to try to fit. Seems to be an issue with 60fps video. This issues has been going on for nearly two years and appears to be random. I changed formats and made a couple of other adjustments and all should be good now.

With this new info, I could probably still use PicasaWeb for the videos now that I have a handle on the issues, but I think the benefits of YouTube for accessibility are still there. Perhaps I will maintain both.

In fact, I just uploaded the new version of the video to PicasaWeb and it works great.

Don't forget that it's possible to subscribe to the blog, to the YouTube channel and to PicasaWeb so you will be notified of any updates or changes.

Penny and Isaak's Latest Feature Film

As promised a couple of weeks ago, here is the film of Penny and Isaak partaking of green beans the second time. Sound is a must, but the facial expressions speak for themselves.

From The Penny and Isaak Video Show

We also have 162 (!) photos in the March 2011 folder. Yes, that's a lot, but it cataloged important events like the first trip to Nana and Papaw's. They also seemed to have been inordinately cute last month. What could we do but snap hundreds of pictures ;)

Those photos can be found here:

Penny and Isaak - March 2011

Enjoy!

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.

A Year ago Today...

Bekka wound up at the WakeMed Cary in the middle of the night while I was delayed getting back home from a business trip.

A few days later I put this up as we were in the 3 week odyssey leading up to birth of the twins.

http://olliestale.blogspot.com/2010/04/twins-hospitals-and-amniotic-sacs.html

It is unbelievable that a year has passed. We have two (mostly) healthy babies and no spare time in our lives, but one year ago we were terrified of losing them.

April 9, 2011 is a much better day than April 9, 2010.

Thanks for the love and support!