Big Steps!

Today, April took her first unassisted steps! This is exciting, because I thought it was still a little ways off. Yesterday, she stood alone for a few minutes. This is the longest by far I have observed her standing alone. I think she thought she was leaning against something, because her dress was lightly touching a toy wagon at Grandma & Grandpa's house. Then, today, she was standing at the back door watching her sisters outside as she often does, and I knelt down by her and encouraged her to walk to me. She stood momentarily, and then took two steps to me! Dale and I then had her go between us, and she repeated it once! Hooray! I'm sure she is still weeks off from walking any distance of note, but this is still a major milestone! She is 16 months, 2 weeks old.

As excited as I am for April, with that excitement come some strong, sad feelings about Sophia. I don't know when or if she will ever take those first steps. As Dale and I had April going between us, Sophia lay an arm's length away on her back on the floor, virtually immobile. As the months roll by and she still can't balance herself in a sitting position, and still can't scoot, the future is beginning to be a little more clear, and I don't like it.

I could, unfortunately, go on about that. However, it has been far too long since I last posted, and there has actually been some very exciting progress with Sophia in the last two and a half months.

First, probably in April, she began reaching for objects that she sees! Yes, that is right -- that she sees. She tracks slowly moving objects about eight inches from her face, and will bat her arms to find and grab the object (if she is interested in it). This has been HUGE. She has gone from no apparent vision, to a little bit. The difference between no usable vision and a little bit is of major consequence. Of course I hope that her vision continues to improve.

Also about the same time, she began rolling from her stomach to her back. It started as an accidental occurance, when she pushed up on her arms (which has slowly improved too) and lost her balance. At first, she would startle and look scared as she flopped onto her back. Now, she does it purposefully, and although she still probably log rolls, it is more graceful.

Then, at long last, about a month or so ago, she rolled from her back to her stomach, which takes more strength. She uses some back extension to do it, which is not ideal, but it is exciting nonetheless. Even better, this new movement was spurred by one of her favorite toys -- a low vision ball on loan from Early Intervention. It sounds like a rattle, and has grab bars for her to hold onto. She like to chew it, and curls around it and rolls to her side as she plays with it. It is the FIRST thing she has tried to move for when it rolls away, and thus the rolling. I actually think she is rolling less now than she was when she first discovered the new movement, however. She seems content to roll to her side and play with the ball in that position.

Both girls also have teeth now. Sophia has four -- two on the bottom, and two on the top -- with more coming soon. April has three, two below and one above. It hurts now if they try to chew on a (my) finger!

Finally, here are a couple of pictures. The first is of April, taken June 8th. The second is of Sophia on the same day. The third is not a family member, but Claire and I and my mom and brother were excited to hear him back in May. Enjoy!

Count Your Many Blessings --- Life

Although we face trials, as does everyone, we have many things for which to be thankful. This is the first of what I intend to be regular entries about our blessings.

When the babies were born last year, I was overwhelmed with gratitude and relief at their lives. They (especially Sophia) had come so close to returning to their creator, that when they made it past their first hurdle of survival, it was easy to look at them and recognize the miracles that they were.

Even as time passed in the NICU, however, life crept into that miracle and I found myself forgetting a little. Gratitude left one day as I overheard a couple in the pod across the room. I learned that this couple lived in the same town I did. Their baby was unexpectedly born a few weeks too early, and they were devastated to have him in the NICU. My babies had been there for weeks, and I was yearning for some socialization, as much of my time had been spent alone with my babies, curtains drawn, “kangarooing” (holding the baby skin-to-skin, which is supposed to be good for preemies). I wanted to say “hello” to them, commiserate with them, and provide sympathy for each other, as some of our circumstances were similar. Instead, in their grief, they never made eye contact with me. One day, as they both wore sweatshirts of the college from which I graduated, I heard them complain to a nurse, “We live so far away! It takes at least an hour to drive here and an hour to drive home. Our baby has been here so looooong. When can we take him home? We have a two-year-old who has to stay with grandma when we come here, and he doesn’t know what is going on, and it is so difficult for him. My husband has to work, and can’t come quite everyday.” These people’s baby was in the NICU for less than five days.

I soon realized that this couple deserved my sympathy, as having a baby in the hospital is difficult whether it is for one day or one hundred days. However, before I came to this realization, I mourned my own. I lived just as far away. I had three other children, including one not yet two years old, who were lucky to stay with grandma, yet also were having a difficult time. My husband had just opened a new business (it opened the day before the babies were born, while I was in the hospital) and so was working two jobs. I had to work once a week so he could visit the hospital at all. My babies had been there for weeks, and would remain for many more weeks.

Not too many weeks passed before I was given a strong reminder of how grateful I should be. The entry to the NICU has a washing station, and everyone who enters spends three minutes scrubbing hands and arms. In my new need for contact with other parents, I greeted a couple washing next to me and asked about their baby. It turned out to be a mom and her brother, and she had a beautiful but sad smile as she told me that her daughter had been born a few weeks too early, but just needed to grow and eat and was doing well. They finished their washing before mine, so I was surprised to see that their baby was in the same room we were. I nodded and waved as I passed their pod on the way to see April and Sophia.

Either later that day or another, they approached me and asked whether they could see my babies (privacy is a big issue in the NICU, so people must ask permission to approach another pod). Glad for the opportunity, I smiled and welcomed them. The woman commented that she had heard from a nurse that I had twins. She admired them and told me they were beautiful. Then, I heard her softly comment about her twins. Realizing that this was emotional for her, I thought that perhaps she had had twins a few years beforehand that did not make it. I gently asked, “Twins?” Then, tears freely falling, she told me that her baby who was across the room had been a twin. Her sister died shortly before she was born. I put my arm around her and struggled for words of comfort. Here were my twins, right in front of her. Life is not always fair. This woman taught me much about gratitude, because, aside from that and another encounter, all I ever heard her talk about was how much she loved her surviving daughter, how well she was doing, and how much she looked forward to taking her home. Her daughter was beautiful, with the perfect color of soft, reddish hair. This woman who had faced such a major trial was optimistic about her baby and their future together.

I think that baby and her mother were there for two or three weeks. I wanted to give her something to let her know I was thinking about her. I struggled from the time we first met until nearly the time she left to think of something suitable. I finally settled on a beautiful journal, in which she could write her thoughts, or notes to her daughter, or whatever she chose. I wasn’t sure this was the perfect gift, but a friend had done that for me when I first entered the hospital, and I appreciated it greatly. A day or two before they were scheduled to leave, I approached the woman and her baby. She rose and met me in the middle of the room. “I have something for you,” she said to me. Surprised, I answered, “I have something for you too.” What she gave me will forever be a reminder to me to be grateful for April’s and Sophia’s lives. “My brother gave these to me at my baby shower,” she explained, tears wetting her cheeks. Her gift is pictured below. Cute onesies that were meant for her twin daughters had been generously, unselfishly, and lovingly passed on to mine. I am eternally grateful for April’s and Sophia’s lives.

(Photos, top to bottom: 1. April & Sophia today, 2. April, top, & Sophia - 8 days old -- 1st picture together, 3. The family, about 3 weeks after babies' births, 4. April & Sophia 1-1/2 months old, 5. April & Sophia today)

Belated Birthdays

Audrey celebrated a birthday this month. The next day, she asked me if she could have “another birthday.” I told her that she would have another birthday next year, when she turns four. She responded, “No! I want another birthday when I turn three!!” Since then, she repeatedly tells her sisters out-of-the-blue and in a reassuring voice, “I’m going to have another birthday.” Little Princess, I suspect you will have many, many more birthdays…



Speaking of belated birthdays, Jolie had a birthday just after the babies’ birthdays. She had a pajama party. It was great to be able to do something fun for her this year. Last year, she was super excited for her upcoming birthday. She talked about it all the time. The morning of March 2nd, when I left for the doctor’s office to be checked because of my worries, Jolie said to me, “Mommy, don’t forget about my birthday!” It tore at my heartstrings, and I leaned down and promised her, “Jolie, I will never forget about your birthday.” I was worried, though, because I had an ominous feeling that all would not go well at the doctor’s office. Well, all did not go well, and Jolie had her birthday, but it was different than we had planned. It was wonderful to all be at home this year and plan something fun for her.

Are You Sleeping?

Are you sleeping, are you sleeping, Brother John, Brother John?
Morning bells are ringing, morning bells are ringing,
Ding, ding, dong. Ding, ding, dong.

“Oh, are these twins?”

“Yes.”

“A boy and a girl?”

“No, two girls.”

“Oh, look! This one is WIDE awake, and this one is sleepy.”

“Yes…”

When April and Sophia came home from the hospital, although they were nearly two months old, we were able to get to know them and spend time with them as though they were newborns. One thing that I noticed within the first few weeks is that April had her eyes open a lot, and her eyes were even a bit buggy looking. I affectionately called her “bumblebee” for awhile. Sophia’s eyes were open much less. She also slept a bit more. At the time, I had not the slightest notion what was to come for Sophia, except that I thought she might be sleeping more as her brain healed from the earlier brain bleed.

By the time we were able to take the babies out into public, it had become obvious to me that Sophia’s eyes, usually downcast, were not seeing things in a typical manner. Since that time, when the girls are in their side-by-side double stroller, strangers have engaged me in the conversation outlined above time after time, after time. Especially since I thought the same thing at first, I understand the sentiment. They make the comments with a smile. They have no way of knowing that every other person to approach us makes the same observation – one awake baby and one sleeping baby.

The problem is, here is what I hear: “One of your babies looks cute, smiley, and typical. What a miracle considering she began life at less than two pounds. The other one, while also cute, doesn’t look at me because she is effectively blind. She looks like she is sleeping, but in reality the environment is simply too much for her to take in, and she closes down. She also can’t move her body in the same way as her sister. She is atypical. Poor baby.”

April & Sophia (who does hold a bottle when her hands are positioned for her - yea!!!)

I understand that this has more to do with my journey of acceptance of my daughter’s differences than it does what anyone else thinks. I also imagine that, one day soon, some people will simply look away when they see Sophia because it will be obvious that something is “wrong.” In fact, the tide is already beginning to change. Recently, people have begun asking how far apart in age the girls are, because April looks older (although their heights and weights are nearly identical, April’s head is bigger and her development is much more advanced).

So, please, keep telling me that Sophia is just sleeping. Maybe we will all wake up one of these days.

April watching swimming lessons (Jolie is in the closest corner of the pool)

Sophia's pretty eye, open wide

One Year Old

April and Sophia turned one year old on March 8th, and what a year we've had with them. I remember, during their long weeks in the NICU, once holding a friend's cute, chubby six month old baby outside of the NICU while my friend went to look at my tiny, struggling babies. One of my favorite NICU doctors walked by, and I said to him, "Here is a real baby!" I was attempting to make a lighthearted comment, but he caught the worry and discouragement in my voice, as he turned and came back just after entering the hallway. He leaned toward me, and with a kind, knowing grin and a reassuring tone, he commented, "Your babies will look like real babies before long too." Even a year later, that memory still brings tears to my eyes.



The seven weeks and two days that my babies spent in the hospital were difficult, discouraging, amazing, miraculous, and wonderful, all at the same time. I plan to record some of my experiences of that time in future blog entries. In brief summary, I had a fairly uneventful twin pregnancy until I was 28 weeks, 5 days along (about 6-1/2 months). On that day, I insisted that my doctor’s office see me because I had felt for a couple of weeks that something was amiss. Despite my premonitions, I was shocked to find that I had an advanced case of twin-to-twin transfusion syndrome (ttts). The perinatologist later told me that my babies would not have survived if I had waited four more days for my scheduled doctor appointment. After an ambulance ride to a bigger hospital an hour away, draining 3-1/2 liters of excess amniotic fluid, and six days of bedrest in the hospital, April and Sophia entered the world via c-section. April, tiny at 1 lb 14 oz, did not even require oxygen until she was several hours old. Sophia weighed in at 2 lbs, 8 oz, but has not fared quite as well as her sister.

When Sophia was one week old, we were told that she has suffered a bilateral grade 4 intraventricular hemorrhage, almost certainly before she was born and as a complication of the ttts. This meant that she had bleeding throughout her brain. She developed hydrocephalus, but was blessed in that it resolved without needing a shunt (which would have required a transfer to another hospital three hours away). By the time she had been home for a few months, however, it became obvious that her vision was not as it should be. She has cortical vision impairment (cvi­), and currently has very little usable vision. She has also been diagnosed with spastic dystonic quadriplegia cerebral palsy. These challenges are due to her brain bleed, which led to extensive periventricular leukamalacia (pvl), microcephaly, and severe cerebral atrophy. Much of this blog will be dedicated to my journey with Sophia.

Below is a picture of my beautiful, real babies on their first birthday.

I think that one child with special needs takes and gives enough emotionally, financially, physically, and otherwise to complete a family. However, we also have Sophia’s twin, April, and thus enjoy a bit of a unique twin dynamic. In addition, we have Audrey (3 this month), Jolie (6 last month), and Claire (9 in July). We love all of our daughters and are grateful that they are a part of our family. All of the past and future unexpected detours in our life will, we believe, lead through beautiful places, and we strive to enjoy the journey.