Blind Babies

In the beginning of March, we noticed that Makayla's eyes and vision development was significantly different than her brother's.  We took her to the pediatrician right away who referred us to an ophthalmologist and diagnosed Makayla with Nystagmus.

Nystagmus means a lot of different things, and it seems to be different in every person.  We are still waiting for Makayla to get to see a neurologist which will hopefully give us a lot more information about her Nystagmus, but for right now what we know about Makayla's Nystagmus is that it's "scanning" Nystagmus, so her eyes pan back and forth from side to side, they also occasionally jerk or shake.   Here is a video of Makayla's eyes panning back and forth while she plays on her back.

 

We also know that Nystagmus almost always come with significant vision loss.  When Makayla was first diagnosed, we were devastated.  I remember coming home from the doctor and trying to figure out if she could see at all, and being convinced that she was completely blind.  But, over the past month, Joey and I have noticed that she does seem to catch things in her gaze from time to time and works really hard to focus on it.  

Recently, our pediatrician referred us to an organization called Blind Babies, a local non-profit organization who works with families of blind or visually impaired children to make sure they have all the resources they need to raise happy, healthy, normal children.  In the weeks leading up to our in home visit with Blind Babies, I have been anxious, to say the least.  I feel like being in contact with an organization called Blind Babies means I'm giving up hope that she can see, like I'm failing her.  I also have felt like they were going to get to our home and show us everything we were doing wrong for her.

Yesterday afternoon, we finally got to meet our "Vision Impairment Specialist" from Blind Babies.  She was very pregnant, and calm and quiet.  She was kind, but I sat there nervously and she jotted down notes and stared thoughtfully at Makayla without saying a word.  Finally, after was was probably ten minutes, but felt like forever, she started to bring out some toys she brought and played with Makayla.  She brought out a bright red, sparkly pom-pom and moved it slowly in front of Makayla line of vision and back and forth.  Makayla followed it, moving her whole head back and forth to keep it in her sights and finally grabbing hold of it once it brushed against her hand.  

My eyes filled up with tears!  She SEES! My baby girl sees! *huge sigh of relief*  I don't know how well she sees, or if she'll see well enough to drive a car someday, but I know that she will know when mom and dad smile at her, and beam with pride and joy.  

The visit was so encouraging and helpful.  The specialist left us the amazing pom-pom and some other useful toys, like a mirror, and some bells for Makayla to shake.  She also brought a very neat quilt that is solid black on one side, making it easy for Makayla to identify any toys that may be lying on it, and on the other side are unique textured for Makayla (and Ausin too, probably) to feel and play with during tummy time.

The tools and toys we received from Blind Babies

The specialist also told us that our dark walls and hard wood floors, make a great home for a baby with visual impairments!  Another relief! As parents we worry so much about weather we are doing enough or doing things right.  It's so nice to have such an important resource available and know that Makayla is getting everything she needs to do well and succeed in this world!

A Thank You Letter

I remember throughout my pregnancy, when people would learn that we were having twins, they would tell us to be sure to accept the help of our close friends and family, because, "it takes a village." And, you know what?  They were right!  Let me just say, what a village we have!

The generosity and kindness began way before the twins even arrived, including a very generous shower thrown by our closest friends, where we received so many useful necessities that we couldn't even walk into the nursery once the day was over. 

Part of Austin & Makayla's bedroom after the baby shower

But the generosity didn't end there.  I first realized just how lucky we were when the babies were first born, and still in the NICU.  Joey had already returned to work, so that he could spend his time off when the babies got home, and I was spending my days at the hospital, coming home only to eat and shower.  Christmas was two weeks away, and with our babies in the NICU, we had no Christmas spirit, and no time to fake it.  But, one evening, about three days before the babies made it home (although, we didn't know they were coming home at the time), I came home from the hospital a little early to find that our friends had been sneaking into our home to decorate for Christmas for us.  Not only that, Santa's elves had brought us a tree and gifts for us and the babies, including stuffed stockings for their first Christmas!  

Me & Joey, with Santa's elves, Leah, Katie, Gil, Aubrey & Billy, on the night of the break-in.

Once the babies were home, Nicole and her talented hubby, Ryman, came to our home to make sure tha in all the madness that follows bringing two babies home from the NICU, that we didn't miss the oppurtunity to take those once in a lifetime newborn baby photos.

Austin & Makayla by Ryman Tolentino

Shortly after the babies came home, Joey's sister came up for Christmas, and to meet the babies.  She spent her time here making sure I got showers and naps during the days and that we got dinners in the evening.  Not only did she come bearing lots of gifts, she took me shopping to make sure we got all those things you don't realize you can't live without until the babies are already here.

Over the next months, our friends, and my dad, took turns making us, and bringing us dinners, and taking over the evening feedings to make sure we had time to eat.  They teamed up to watch the babies so that Joey and I could get out for a date night or two, and Gil came over on his week days off to make sure I got some gym time.

In February, when we learned that I would be having surgery to remove my gallbladder, my in-laws where packing their bags, and on their way up to stay with us before Joey could even hang up the phone.  They stayed with us for a week, while I recovered.

When we learned that Makayla may have some vision problems, our friends and family lent us shoulders to cry on and words of encouragement.  Most generously, Denae even offered to take time off work to take care of Austin while we take Makayla to all her doctor's appointments.

And again this last week I was reminded just how lucky we were, when I went back to the hospital for more gallbladder related stuff, and our friends and family stepped up to support Joey while I was away for four days.  My dad, Aubrey and Denae, all taking "work from home" days to work from our home so that Joey could keep working and not have to take more time off from his still relatively new job.  Other friends, making trips to and from the hospital, and helping with the babies when Joey was home since Makayla was going through a difficult time eating.  All the while, Joey's parents and sister were ready to come up at a moments notice in case my stay at the hospital got lengthy.

Almost daily, Joey and I talk about how lucky we are to have so many close friends and family near by and that they are willing to help out at a moments notice.  We try to brainstorm just how we can show our gratitude for all their generosity.  There are not enough words, or enough gifts to express just how grateful we are.  It's not much, but this is my way of saying thank you.  Thank you so very much.  We'd be lost without you.  From the bottom of our hearts, we are so very lucky to have you all in our lives, now and always.  Thank you and we love you.

Question of the week: When did it get "easier" for you?

I've been promised by other mothers from my local "Mothers of Multiples" group that is does get easier.  Now, I'm only four months in, but I con honestly say, it hasn't.  I remember when we first got to bring the babies home from the NICU a friend of ours said, "You're really making this look easy" and I told her that I was pretty sure that this was the easy part.  I mean, even though we weren't getting more than 2 hours of sleep at a time, all they really did was eat and sleep and the schedule was definitely predictable, and in sync.  I had visions of it getting harder when they were both not sleeping at all and crying all the time from teething, or even later when they started crawling and walking and were moving quickly in different directions.

Well, those weren't the triggers, but I was right.  It did get harder.  There are things that got better, like the fact that they easily sleep 10 to 11 hours a night now, and I know I will get a shower each day.  But, it got harder once I could no longer keep them on the same feeding schedule, so instead of doing 8 feedings a day, I was doing 16.  Also, now that the babies spend time awake during the day, but are too young to be interested in toys, I have trouble keeping them entertained and stimulated and it feels like they spend all their waking hours crying.

The pediatrician promises that on April 12th, the day the twins turn three months "corrected age" (our twins were 6 weeks premature), our lives will change and it will be the first of easier days to come.  And so the countdown begins, 7 days to go!

Love is in the air

Three of my closest friends, and my cousin, were engaged in 2010 and plan to marry in 2011.  The first of which was married on Saturday to her high school sweetheart of 13 years. 

This was the first wedding I attended as an adult, and I have to say, I had a great time!  Leah is one of my best girlfriends, and like a sister to me.  We were very close friends from the moment we met, about 8 years ago, and I had the honor of being one of her bridesmaids.

The beautiful bride and her maids.

Even though the weatherman threatened for weeks that we would have rain and high winds for the wedding, it turned out to be a beautiful spring day, made even better my the gorgeous cherry blossom trees in bloom.  The couple wrote their own vows and spoke about the long windy road that brought them to this day, and for someone who really isn't too teary eyed for the most part, I have to admit, I sniffled through the ceremony and sobbed through the reception!

I am so happy for the new Mister and Misses.  I love them both very much.  A couple that marries after 13 years together is in it for the long haul!  

The happy bride and groom

And a quick thank you to my own wonderful hubby of five years!  I love you very much and am so thankful to have you!

Four months old

Today is a special day.  Not only are we attending the wedding of our very good friends, Leah and Adam, but our twins are also four months old today! 

Actually, I'm not attending the wedding, I'm in the wedding.  This will be the first wedding I'm attending as an adult and I get the honor of being a bridesmaid for one of my closest friends!  But, more about that tomorrow, after the wedding...Today, I'm talking about about Austin & Makayla...again!

Four months old.  Four months???  On the one hand, I can't believe these two are closer to being six month old babies that they are to the day they were born.  Yet, on the other hand, I can't believe it's only been four months!  I can hardly remember what life was before them. Before my day was broken up into two and half hour blocks of time, or what it was like to sleep until I woke on my own just from having gotten enough sleep.

Four month old!

I try to remind myself every day to remember every moment and enjoy these days.  I won't always get to spend all day, every day, with them, and there will come a day when they don't adore each and every kiss I smash all over their faces. 

But as much as I try to make sure I remember everything, and savor each moment, I already find myself wishing I could recall those first few weeks and months more clearly.  And I have to admit, I find myself wishing some of the hard days away and looking forward to a time when they will be entertained or easily distracted from their fits, by toys or each other.

Months 1 through 3

Realizing how quickly these last four months have passed us by, and thinking back at just how few of the moments I can recall in great detail, I'm vowing to slow down and breathe a little deeper over the next eight months, and years to come.