Happy 2nd Birthday

Happy 2nd Birthday, April and Sophia! These cute little girls are holding stuffed animal bunnies that I bought when they were in the NICU. We took a series of pictures there of them with the bunnies to show their growth. Those pictures are on my other computer, so I'll simply comment that the bunnies were just a tad bit shorter than April and Sophia were -- and the bunnies were chubbier.

Below is April. I always remember that, in the NICU, a nurse once commented regarding her gaunt face: "Oh, she'll be attractive when she's older... very distinctive looking with well-defined chin and cheek bones." I had to smother a laugh at that time, because my children do NOT have thin faces, and I knew that April would be no exception. I do think she is attractive, though:

Below is Sophia. I think she is cute, too!

Below is what happened when I asked Dale to take a picture of April and Sophia together. He laid them on the floor. April left, and Sophia must have been bumped in the process, because she wasn't happy. Notice her spastic legs.

I love the picture of Sophia below. She was opening gifts (well, her sisters were really opening her gifts) and sitting in her chair fairly uprightly for the first several minutes.

Here are some things about Sophia at age 2:

* Eight teeth (molars still emerging) -- only missing the incisors

* Will be weighed and measured at the end of the month -- probably over 21 pounds and under 30 inches

* Says a few words spontaneously on occasion (not often): Ma (for MaMa), Buh (for Jolie), All done, Na (for song/sing), Cuh (for Claire)

* Says additional words when she hears them or is prompted: Da (for DaDa), Buh (for April), A-Ma (for Amen), Ba (when she hears her ball), Dow (for down when I'm carrying her down the stairs), Muh (for more), Ha (for hi), 'K' sound (for book), Buh (for bye), 'K'- 'K' sounds (for cracker) -- I might be missing a few

* Will sign "thank you" when prompted by putting her hand to her mouth

* Loves to chew on hard toys

* Will put anything in her mouth and then bite, including people's skin -- we are often telling her, "No biting!!" (And then, if I don't say it first, April chimes in with, "Ouch!")

* Is a good eater -- she will eat most things by feeding herself with her hands... she spills a lot and her appetite dropped off for a couple of weeks, but seems to be back now

* It can be difficult to get her to drink enough... she usually drinks from a sippy cup... but she just recently learned how to suck on a straw! This is a major accomplishment!! (She still needs to learn to coordinate the suck & swallow so liquid doesn't drip from her mouth)

* Cannot sit unassisted -- this has actually become worse as her legs are tightening more as she gets stronger...

* Rolls on the floor with some effort

* "Commando crawls" -- pulls herself across the floor on her belly using her arms

* Can see well enough to crawl toward an object several feet away from her, though she seems to "turn off" her vision at times

* Learning to take steps in her gait trainer, but can't propel it herself

* Seizure-free so far since beginning regular seizure medication (Keppra)

* Laughs when roughhousing

* Loves for people to sing her songs -- a favorite is "Rain is Falling All Around"

* Can put her hand on her nose when asked to "touch her nose"

* Doesn't have a pincer grasp, can't point her index finger

* Is a very loveable, fun little girl whom we love and LOVE having in our family!!

Below is a picture of April kissing Sophia. Sophia used to scream anytime April touched her (April's touch was probably somewhat uncoordinated and rough), but she's getting better about that -- April's probably becoming more coordinated, and Sophia's probably learning that April won't always inadvertently hurt her. These are my two little twins.

Here are some things about April at age 2:

* Has eight teeth -- incisors look like they will break through any day

* Unknown weight and height. I'd guess 24+ pounds and maybe 30 inches?? (She's heavier & taller than Sophia)

* Has the cutest smile with dimples. I remember, when she came home from the hospital, she didn't often look at me. Now, I love to make eye contact with her and hold her gaze as long as possible to take in that adorable smile.

* Says a lot of words and occasionally puts two together. Sounds like she speaks in sentences, but we can't understand any of it. Most of her words are not very clear, and I worry a little about her speech. Here is a partial list: Mommy, Daddy, Claire, Buh (for Jolie), Audrey, Eee-a (for Sophia), more, all done, thank you, please, ouch, hungry, cat, moo, meow, baa, ear, eye, nose, no, yes, hi, bye, woof, Addie, up, down, cracker, book, baby doll, blankie, love you

* Usually calls Sophia "baby," but will say "Eee-a" if I push it

* Has learned to feed herself with a spoon

* Can drink from an open cup, but will throw a fit for a sippy when she sees Sophia with one

* Likes to put all her food into an open cup

* Until recently, answered "yes" as "uhh-uhh," with her voice rising at the end of the utterance. Cute. Now, usually answers "yes" as "no," although she can physically say the word "yes" when I prompt it.

* Likes to play with whatever Audrey is playing with -- Polly pockets, etc., but she is usually not a welcome addition when that type of toy is involved

* Tries to run, and is getting faster, though I think she still always has at least one foot on the ground

* Nicknamed "kitty" by Audrey

* Has shown more interest in Sophia, and will assume a helper role -- will hand her toys she drops, and copy what I do -- like trying to "help" with her positioning

* Can kind of sing the chorus of "I Am a Child of God" (though you can't really understand the words)

* At bedtime, asks for "mo baby," which means "more blankie" or more blankets

* At bedtime, has down the urgent "Mommy!" to try to get me to stay in her room, but then doesn't say anything else

* Likes people

* Is somewhat afraid of -- but fascinated with -- our (outside) dog, Addie

* Is a sweet, smiling little girl whom we LOVE having in our family!!

Below is a picture of April with her candles. I thought she would be excited about her party, but the whole day she just seemed kind of perplexed. I felt badly because I didn't prepare her to try to blow out her candles, so she wouldn't even try. She did enjoy her cake and ice cream, though.

Sophia also enjoyed her cake (see below). I had worked on blowing with her, but she purses her lips and blows up toward her nose, and she didn't think it was time to do it when her candles appeared. Maybe next year?

Happy two years old, my little girls! I love you!

18 months - April

April is now 18 months old!

April has a lot of nicknames. Sometimes, I call her "Trouble" (with much gratitude and joy behind that label). Audrey, for some unknown reason, calls her "Kitty." Maybe it is since she crawled around for such a long time. I also call her "Miss," and Claire, Jolie and I sometimes call her "Cutie." She seems to be doing pretty much everything she should be doing -- just a little bit behind.
April eats well. She is not very picky -- although she doesn't like plain Cheerios (she will eat them in a bowl with milk). She self-feeds finger foods well, and attempts to use a spoon occasionally. She drinks using a sippy cup, but can also drink from a straw and is beginning to learn to drink from an open cup. Thankfully, the days of spitting up every time she eats are long gone. She also doesn't care for water. She usually drinks whole milk, and enjoys juice occasionally, but she does NOT like water. The picture below shows her reaction to discovering water in her sippy instead of milk.
When April is finished eating (and she doesn't always finish what is on her tray or in her cup), she says "all done!" Although April doesn't run around talking all the time, she does actually say quite a few words. Among her repertoire are: mama, daddy, thank you (one of her first words), me (for "give me that"), nose, no (newly acquired - not surprising since she hears it all the time), ball, up, down, bath, uh oh, hi (which she calls out to many people she sees), bye, soft, lullaby, here, and baby (this was her other first word -- and she used to say it very clearly). A strange thing is that if she is out of my sight and I call to her, she never answers. I say "April!" and I predictably hear silence. Sometimes, when I find her, she is just around the corner from where I had been.
She obviously sucks her thumb, as have all my children (except Jolie didn't start until 18 months, and Audrey sucks her fingers). She is a pretty smart little cookie. When I do up her car seat or stroller straps, she watches carefully, and then grabs them to try herself. When we undo the straps, she sometimes (instead of trying to get out) grabs the buckles, stares intently at them, and tries to snap them together. She rotates her little wrist around to look at all angles of the buckle. I wonder whether she will learn how to get herself in and out of her car seat before Audrey does! (Audrey is just not interested.) As most kids, she loves remotes, phones, and the laptop. I've had to delete lots of unwanted characters from this message, as she has tried her best to contribute to it. Right now, she is trying to insert a straw into Audrey's empty juice box.
("See my four teeth?") April finally walks everywhere now. My "deadline" for her (before I began worrying) was August 20th. Audrey didn't walk until she was 15 months old, and August 20th was April's 15 month adjusted-for-prematurity-age. Well, as posted here earlier, her first steps were July 21, and that was a big relief. She didn't progress very quickly, but gradually we convinced her to take a few steps most days. Finally, in mid-August, she decided she'd had enough with crawling and that her future would be on her two feet. Way to go, April! She still has that wide stance and is building her strength. I look forward to her running eventually!

April has some fun facial expressions that she uses. She likes to scrunch up her nose like this (picture below) and seems to know that she looks funny / cute. She doesn't seem to have a favorite toy -- her favorite thing now is just to walk around, finding whatever looks good (especially if it is troublesome) or following someone around. Although she and Sophia don't have the typical twin relationship, they do have some touching moments. April gives Sophia her favorite ball toy without being asked. She doesn't play with it herself, although sometimes she takes it to look at (and then gives it right back -- again, no encouragement needed). One of the first times we helped Sophia in her stander, April reached out her little hand to help push Sophia up from her bent-over position. The reason she knows the word "soft" is because I show her how to pet Sophia's head softly and say, "soft." As Sophia would tell you if she could, April needs this reminder because her pats can be rough. Sadly, Sophia can usually tell if April is close by, and she cries if she is worried about being accosted. April's and Sophia's cribs are right next to each other. April's mattress is lower than Sophia's. One morning, they didn't notice me as I entered the room. I observed that Sophia had rolled over to the edge of her crib by April's, and Sophia's arm was extended through the slats into April's space. April rolled over so her back was against Sophia's arm, and Sophia patted April. It was fun to watch.
We love this independent, caring, talking, walking, bunk ladder-climbing, dishwasher sitting, helpful, little girl!

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)

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.