Sunday, March 7, 2010

What's in a Name?

Amina Liana

When we named Amina something happened that I did not anticipate. Even though I love her names and the meaning and story behind the names I kept feeling unworthy of naming her and so aware of the awesome responsibility of naming another person. How could I possibly assign a name to something so complex, so precious as a soul? A name follows someone for life and we couldn't even ask her if she liked the names we picked for her. It was a weighty responsibility and I felt it strongly in a way that I had not anticipated. But a name must be picked, and I stand by our choice. She will make of her name whatever she wishes. And we gave her two names that contain many possible nicknames within them, so she has options. :)

Amina, we tried to pick a name as special as you are:

Amina is a name from the Arabic world, the name of the mother of the prophet Muhammad. It is derived from the Arabic word aamina which means, in essence, to feel safe, peaceful, and secure, to always be protected. The name is also recognized as meaning honest, truthful, trustworthy, and faithful.

You were named after a little eight-year-old girl named Amina who lived in a village called Makunduchi on the island of Zanzibar. Zanzibar Amina is all grown up now, probably married with children of her own. She has a very beautiful smile and there is a very special story about her.

One evening, in the summer of 2001, your daddy was visiting and interviewing a family near Makunduchi a good distance away from his home. It got dark before he realized that his flashlight did not work. He has always had a very hard time seeing in the dark and knew that he could not find his way home without help. Not to worry, a group of children your daddy had befriended gathered around him, all of them willing to help. Little Amina stepped up, took him by the hand and guided him through the dark for about half a mile to the main road until he was able to find his way home.

Liana is a name derived from the Hebrew Eliana, which means God has answered. It is also a French name that means to twine around or to bind together. In English, Liana is the name of the type of climbing, intertwining vines that connect the trees of the rainforest and provide a network for animals to walk and swing safely from tree to tree without ever having to touch the ground.

So, in short, these names in combination mean very special things to us that we hope to remember when we say them. And we hope you like them, Amina!

Here is a picture of the Amina who helped guide your daddy through the dark that night. Who knew that one day we would have our very own little Amina who can see so well in the dark. Now it is your turn to take your daddy by the hand and guide him when he can not see.

Monday, February 22, 2010

The eye revelation and the squeaky binky

As we were getting ready to take Amina home from the hospital the day after she was born, the physician's assistant came by to give her one last assessment in order to give us the green light to take her home. Our little baby was eating, spitting up, burping, pooping, peeing, sleeping, and being generally adorable just as every good baby should. Jacob had gone to the hotel to pack everything up when the PA looked in Amina's eyes. Her eyes had been pretty swollen (newborns eyes usually are, if you can imagine) so she had not been able to get a good look the day before. Today when she looked she said, "Hmmm. She's got coloboma."

Coloboma? I had never heard that word before. The PA showed me Amina's "keyhole" shaped pupils, and went to call an expert at the Casey Eye Institute. The expert said that sometimes coloboma is associated with a syndrome that includes, among many other things, heart and kidney problems and esophageal atresia. To rule out the syndrome, they passed an orogastric tube down into Amina's tummy to check for atresia and they took an x-ray to check for extra kidneys etc. They found that everything was very normal. Happily, her coloboma is not the kind that is associated with a syndrome.

So what is coloboma? It is basically a gap in both her eyes where they did not form completely during development. Since this blog belongs to a nurse and, what's more, a nerdy nurse, I will get technical here. For those who snore when things get technical, feel free to skip to the cute videos at the end.

For you other nerds out there: I have learned a thing or two about coloboma over the past 6 months from the Coloboma Moms yahoo support group, two pediatric ophthalmologists, and a lot of internet searches. Colobomas happen about 1 in 10,000 births and each case affects the vision of the individual differently depending on how much of the eye is affected. During the fifth week of pregnancy, the eyes start to form in an arch-shaped tunnel. Nutrients flow through the tunnel to help form the eye. Later on, the bottom of the arch zips up to complete the round eye. Amina's eyes never zipped up completely. The name "coloboma" is a Greek word that means "unfinished".

Colobomas are often associated with having one or both eyes smaller than usual. Amina's right eye is smaller than her left eye. Depending on what part of the eye does not zip, there can be visual impairment ranging from mild light sensitivity to blind spots to total blindness. We were told this last bit when Amina's colobomas were first discovered, and we had to wait six weeks until her first visit to the ophthalmologist before we found out that her colobomas do in fact go all the way through, affecting the iris and the retina including the fovea, macula, and optic nerve in both eyes.

The fovea and macula are the parts of the retina responsible for sharp vision - the ability to see detail. A good fovea is essential for high visual acuity. Because Amina's colobomas go through this area, the ophthalmologist believes that the best visual acuity she will ever be able to have is somewhere between 20/80 and 20/400. She will fall somewhere in that range, her left eye likely seeing better than her smaller right eye. In fact, her right eye has recently started to turn inward which can be a sign that the vision in that eye is bad enough that the brain has decided to ignore the signals from that eye rather than try to reconcile the images from that eye with the other eye. To strengthen the eye-brain connection in the right eye, we have started patching the left eye for two hours a day. Amina can still obviously see lights and colors and movement with her right eye when the other eye is patched, but we won't know the details of what she can see until she is old enough to tell us.

There is nothing that can be done to "fix" the colobomas, no more than one could grow a missing finger. No amount of fabulous glasses will improve her visual acuity, either, because there is nothing wrong with her lenses. In a camera, you can have the best lens in the world, but if you have bad film, you're not going to get a good picture. Similarly, even with glasses, Amina will not be able to see sharp details because her retinas simply can't capture them. There are things that we can do, however, to maximize the vision that she does have and we will do all that we can to make that happen.

Unless you know about Amina's eyes, you would never guess that there is anything different about her vision. She behaves like a perfectly happy, perfectly normal baby and has met all of her milestones with ease. We have had vision teachers from Early Intervention programs come to our home nearly monthly since she was born and they are all amazed at how well she is doing and how well she seems to be able to see. Everyone assures us that brains are amazing things and that Amina's brain will do great things with the visual input that it receives. She will likely get around just fine.

Amina vs. The Orogastric Tube and the Squeaky Binky

A note about coloboma and light sensitivity.

Normal irises dilate and constrict to admit appropriate amounts of light onto our retinas. Amina's irises have gaps in them which let in a great deal more light than her retinas would like. This makes her very sensitive to sunlight and also gives her super night vision. We have gotten super cute baby sunglasses for her to wear outside. She usually uses them as a teething toy, but she occasionally leaves them be and I think she will soon learn that they make her eyes more comfortable in the light and will leave them on. The following is a video that I took when Amina was four weeks old which I watched many times to prove to myself that my little girl wasn't going to be completely blind. Anyone who reacts that much to sunlight couldn't be blind, I told myself. I was right.

Sunday, February 7, 2010

Amina's Burp Saga

I have been trying for at least five months to figure out how to explain in words how excited and happy we were to become parents, how enthralled and in love we are with our new little baby girl. These videos, taken just minutes before we took her home from the hospital, say it better than I ever could. It is love that makes those little everyday things so shiny and fantastic.

Amina's Burp Saga: Part I

Amina's Burp Saga: Part IIA

Amina's Burp Saga: Part IIB

Amina's Burp Saga: Part III

Tuesday, September 29, 2009

Amina's Amazing Birth Story

And then there were three!

How did Amina join our family? Well, I'll tell you the story...

First week of March 2009 - Jacob and Laura are finally approved as an adoptive couple and our profile is published online. Happy day!

March 11 - We are contacted by a birth mom living in Utah who is interested in placing with us if adoption is what she decides. We wait and hope for the best.

May 28 - Things work out for the Utah birth mom and she decides to keep her baby. We are happy things worked out for her but we are, of course, disappointed that we don't get to be parents yet.

Sunday June 7, 2009 - We get our first email from Amina's birth mom from the Oregon Coast. After our last experience, we try very hard not to get excited.

July and August - We wait and hope, getting encouraging emails here and there. Our sanity is just about to go out the window when

August 31, 2009, 4 pm - We get confirmation from the doctor that our birth mom is pregnant and that she is due "any day"! We get a car seat from our friend that night - "just in case."

September 1, 2009 (the next day) - I (Laura) am scheduled to work at the hospital and my coworkers give me the easiest assignment - an easy delivery - because they can see I have "baby on the brain" and am pretty much good for nothing difficult. At 10:45 pm my patient is minutes away from having her baby when Kathy, my coworker, comes into my patient's room, taps me on the shoulder and says, "Can you step outside for a minute?" Once outside, she says, "It looks like you are going to Newport tonight: your husband is on the phone." I run down the hallway to where my coworkers are grinning and giggling at the nursing station and Katherine is holding the phone out to me. I say, "You guys are pranking me, right?" But then lightning goes through my body as I hear Jacob's voice on the other end saying, "She's in hard labor and she's driving herself to the hospital."

What happened next is a blur. I paced around for a little bit unable to think straight, called the caseworker and confirmed, finished my charting, waved goodbye to my fabulous coworkers who were saying, "go on, get out of here, we'll take care of everything," and got out to the car by 11 pm. I tried very hard not to speed home where Jacob was furiously packing. Soon we were all packed and on the road toward Newport via Tillamook. I remember the drive was gorgeous. The moon was shining brightly, casting brilliant light on the trees and the ocean, creating a moon path to the horizon. I thought to myself: A herald of our baby's birth. As we got near to Tillamook, we decided we had better think of names. The girl name was easy. Jacob has always liked Amina. It is a special name to him. I have always loved the name Liana. I woke up one morning and saw it written in my head and loved it. When I found out what it meant, I loved it even more. Amina Liana works so well and so lyrically, we didn’t have to discuss it any more. That was it. We felt very warm and happy about that name.

Trying to decide on a boy’s name was much harder. We had thought about Joseph Jacob in the past, but those names are so common. We wanted our baby (if it were a boy) to have a name that he could call his own. We thought and thought and talked and talked, and we even resorted to reading all the store signs and street names as they went by: "Hmm, maybe Fred, how about Meyer?" trying to think of something good.

We were about 20 minutes away from the hospital when I called Julie, the caseworker, who was also on her way to the hospital. She said, “I was just about to call you. I just got word from the hospital, and she has just been born. You are the proud parents of a baby girl! Congratulations Mom and Dad!” I looked over at Jacob and said with astonishment, “We have a GIRL!” Jacob had thought she would be a boy, so this news was a little shock, but it took about a split second for him to get over it and we were both so happy. We were so so happy. One of the first thoughts I had was, well, no wonder we had such a hard time thinking of the right boy’s name; Our little girl had already been born! She was born at 0106 in the morning on September 2, 2009. Eight pounds, one ounce, 20 1/4 inches long, with brown hair that stuck up on top. We didn’t know this yet, though. All we knew is that she had been born, and we tried really hard not to speed all the rest of the way to the hospital. Julie the adoption caseworker beat us there by a few minutes and we met her outside the hospital room door where Amina's birth mom was waiting inside. We went in and met her and gave her hugs and thank you’s. There is nothing we could do or say to express the depth of our gratitude for such an incredible gift.

The nurses said they would bring our baby girl to us but that we ought to wash our hands first, so we went into the bathroom to wash our hands.

Daddy got to see her first. He saw her as they wheeled her into the room. He whispered to me excitedly, “I saw her! She’s really cute.” So with our hands clean, we went in to meet our little girl. When I touched her I felt so happy that my throat choked up and my voice wouldn’t work. Could it be that here was my little daughter? It was, and she is.

Friday, May 8, 2009

The Reason Why Exploratory Walks are Important

We had been living in our apartment for over a month and a half before I got around to exploring. One day at the end of April I finally ventured up the road beyond the driveway. We can only see a grove of thick trees from our apartment windows, so I was not expecting to find what I found. Not 200 yards up the road I saw this:

Here's the panoramic shot - three photos spliced together. You can click on it to see it in full scale:

Our apartment is located just to the right of this picture, inside the thick grove of trees:

Who knew this vista was just beyond that clump of trees:

And that, my friends, is why going for walks up the road is a good idea. You never know what you might find!

Living in the Country

Living further away from Portland makes for a slightly longer commute. The payback, however, is well worth every extra mile. Every evening I drive through beauty to work. When work is done I relax and refocus as I drive through beauty on my way home. Every day the wheat grows a little bit taller. I can see the earth come alive before my eyes. The drive is a perfect way to transition from the hustle and bustle of the world to the peace of home.

Scenes along our daily drive:

Now, doesn't that make you feel better after a long stressful night at work?