Artist

(Some of this is identical to Fighter’s story. That’s because they’re twins, and some of the information overlaps. I’m lazy and didn’t see the point in trying to rephrase the parts that were identical :P)
The day I found out I was pregnant with twins, I sobbed hysterically. I was SO nauseous, the vertigo was making it impossible to function, and I couldn't imagine dealing with more. And I knew twins meant more, along with a host of other worries.

I was SO right. A few weeks later, though, I started getting excited about it. I had always imagined having twin girls, just like the Sweet Valley High sisters. They would be beautiful and close and wonderful people, and their big brother would be proud and protective.

And then we discovered our twins were boys. Luckily, this was two days after I had decided that I wasn't sure I wanted girls, that my boy was perfect and two more boys would be that much more perfection. Everyone assumed I was disappointed--I had made no secret of wanting a girl. But I was secretly glad. In my mind, girls are harder to raise than boys, and I couldn't imagine having another me in the house. :D

Artist was Baby B. Our OB is a big believer in ultrasounds, and I was high risk before we found out there were two babies in there, so we were able to chronicle our pregnancy with frequent ultrasounds. Artist was smaller than Fighter in the beginning, significantly so around months 3 and 4, and then slowly, Artist began to catch up. And then surpass Fighter. I was concerned, but no one else was--after all, they were still both healthy sizes, with strong heartbeats. Fetal movements began to decrease alarmingly near the end, but then, of course they did--there was no more room! They were also amazingly strong already, cracking my ribs repeatedly during the last couple of months.

At 36 weeks, 6 days gestation, the physician's assistant handling my twice-a-week checkups said my blood pressure was too high. It had been slowly climbing throughout the pregnancy, and my kidneys were also having issues. Fetal movements were down, also, but no more so than they had been for two weeks. Nevertheless, she wanted me to go to the hospital--the larger hospital with the prenatal unit, not the smaller hospital where I wanted to deliver. The smaller hospital would not allow me there until I was 37 weeks. So I politely said no, I'll see you in two days, and left. She then tracked down my OB, who was not on call but was the head of obstetrics at my preferred hospital, and got his permission for me to go there. And then she called MY MOTHER, who happened to live near her, and told her to make me go to the hospital. I had just picked up my oldest and we had taken him out for a family dinner that we suspected would be the last before his brothers arrived, and my parents tracked us down at the video store, preparing for a family movie night. This is the sort of thing that happens when you live in a small town :P

I asked my OB to put off delivery. I wanted the boys' lungs to develop. And I told him in no uncertain terms that I wasn't prepared for a stay in the NICU--the pregnancy itself had sapped every bit of inner strength I had, and I simply had no more left. And then I joked "Besides, you promised me September babies, with pretty sapphires for my mother's jewelry. August is peridots. Peridots are simply not as pretty as sapphires." My OB saw right through my frivolous reasoning to the heart of the matter--part of the reason I trust my life and that of my children to him--and agreed to wait. Until September 1, four days away. But only if I would agree to an amniocentesis, a c-section instead of risking my blood pressure would go even higher during delivery, and only if I would stay there, in the hospital, in bed, until then. I agreed.

September 1 was a Saturday, and I was more than a little surprised not only that my OB had agreed to that delay but also that he had managed to assemble the team he had on a Saturday morning--my OB was there, as was my pediatrician, an anesthesiologist, and an additional doctor (I suspect a cardiologist, since they were concerned about my blood pressure). There was an RN to assist each doctor, and an additional RN for each of the twins. And there were two LPNs. That's right--a medical staff of 12 for what I assumed was a routine delivery. There was barely room for my husband in the operating room!

Things started off rocky--I crashed on the table after the spinal block was inserted. My blood pressure just bottomed out, much as it had during the beginning of the pregnancy. The anesthesiologist, who has one of the most calming voices I have ever heard, got the situation under control in about ten minutes, but it was pretty frightening there for a bit. In addition, there's only a short amount of time for a conscious c-section delivery (approximately 30 minutes) and if you go beyond that, then you need to put mom to sleep, which increases the risk of complication for everyone. So we were on a pretty tight time table. In addition, my OB wrongfully assumed that my little ones would be, well, little--twin sized, not normal baby sized :P He made the incisions smaller than he would have otherwise, and had some difficulties maneuvering the babies out, and because of the shortened time table didn't have time to make it larger.

Artist took a deep breath and then cried the most beautiful sound after delivery, and then peed all over the doctor--an action his twin had performed just two minutes earlier. He joked about it, but only for a second—I didn’t understand the frantic feel to the air, but I did see that the OB was examining the placenta very closely, even holding it up to the light, before he began stitching. He later explained that he was trying to establish if the placenta was a single placenta or two placentas that had fused, to help them determine if the boys had suffered from twin to twin transfusion (he could not make the call, but they clearly had twin to twin). Twin to twin transfusion is very, very rare in fraternal twins, but ours did suffer from it. Fighter was whisked out of the room and into an oxygen tent and given an IV, while my 6 pound 13 ounce Artist was given to his mama, who was begging to hold him. This was a new experience for me—my oldest was born by emergency c-section after days of labor, and while the nurses propped him into my arms with an artful placement of pillows and blankets to make a pretty picture for the grandparents as we were wheeled down the hall, I actually had little interest in anything other than sleep by that point. But with the twins, I was wide awake, and I wanted to hold my babies. So much so that not long after returning to my room, I was drugged into incoherence—and even then, I wouldn’t let them take Artist out of the room for longer than a few minutes at a time.

Artist nursed right away, and by all appearances was a healthy little boy. Our pediatrician seemed to hover over him, though, seemingly expecting some unseen catastrophe—it was only later that he explained that the recipient twin from twin to twin transfusion usually suffers more long term effects than the donor. Artist did not seem to have any of the ‘minor’ birth defects his brother had—he was not tongue tied, and most importantly did not have a discernible heart murmur. We reserved our worry those first few hours for Fighter, and just enjoyed our Artist.

When Fighter was 12 hours old, they removed the oxygen for good, and I felt like I had my babies. We put them into the same bassinet--they shared a womb, it just felt cruel to put them across the room from each other. They nursed and snuggled, loved to be held and swaddled. They were both thumb suckers--opposite thumbs--and looked so cute lying side by side, sucking their thumbs. As they grew, they occasionally sucked each others thumb, or foot, or whatever they could grab, which we saw as incredibly sweet and endearing.

Their growth was slow, and they spit up a LOT, but at first we thought it was just overeating, and then 'forceful let down' (a breastfeeding phenomenon which some 'lucky' moms have, in which the milk practically sprays into baby's mouth). Just before they were three months old, when they were still wearing preemie sized clothing and had not yet doubled their birth weight (which for Artist was 6 pounds 13 ounces), their pediatrician diagnosed acid reflux, and we medicated them for it. It didn't help. By Christmas, I was pumping milk and mixing it with cereal--that didn't work, either. New Year's Day was spent in the hospital with Artist--the babies had a virus, and Artist was dehydrated. We spent the next two months accepting that they could not process my breast milk and finding a formula that worked (Similac Sensitive AR, only available in ready to feed, with a secret ingredient of gold, apparently, based on the price), and then they finally started to grow. We all breathed a sigh of relief, and settled in to enjoy our babies.

That relaxation only lasted a few weeks. Artist always, always had an odd affect to him—there was just something otherworldly about him. It was like he had come from some other place, and intended to return there soon. It terrified me. So when he turned blue at around six months, I panicked. A LOT. We took him to his pediatrician, and his oxygen levels were fine. We took him to a cardiologist, a kidney specialist, even a specialist who dealt with childhood arthritis, and no one could tell us what was wrong. We still don’t know what was causing the problems, but theorize that it was a circulation issue caused by damage done by the twin to twin transfusion. He has lost the disconnected affect, and as he has gotten older the ‘attacks’ have decreased in frequency and severity. But occasionally, he still turns blue. Usually his lips, hands, and feet, but sometimes his limbs are blueish and mottled as well. Sometimes, his lips ‘harlequin’, so that half his lips are normal and the other half is blue. It’s still a frightening thing to see.

At their one year check up, I was told that they were a little behind, but that was to be expected both with twins and with their struggles the first few months. At their 18 month checkup, I brought up autism for the first time, mostly in reference to Fighter. My pediatrician (who would retire to academia soon after) told me that he himself had an autistic son, and that while we were free to have our son screened, in his opinion our son was not autistic. We breathed a sigh of relief, but unconsciously, I was still concerned. There was just something different about our boys. On the other hand, there was something different about ALL of our boys, so we tried to just tell ourselves it was just who they were.

At their two year check up, our pediatrician had changed, and the experience was insane. The kids were absolutely wild, and my attempts to talk with the pediatrician were in the middle of chaos. Still though, he said it looked like the boys were a little behind in speech, but we would review it again later, and it was probably nothing to worry about.

By the time everyone agreed the boys may have a delay, they were 2.5 years old. In West Virginia, there is a wonderful service for children called the birth to three program, designed to help young children and their families get 'caught up' before the school years start. By the time we all agreed there was a problem, however, my boys were really too old for the program. So I waited until the school year started and scheduled them for a speech evaluation, fully expecting to spend the year taking them to speech therapy. After just a few minutes with the boys, the therapist said "These boys need SO much more than just speech!" and in a whirlwind, we were enrolled in preschool, almost two years earlier than we had planned for them to be. A few months into preschool, the teacher gently suggested we consider an OT evaluation, and so we found a therapy center and the boys began speech an occupational therapy, and Fighter started physical therapy to address a weak core and poor body awareness. We took them to a family therapist as well, and still the closest thing to a diagnosis we got was 'developmentally delayed'.

We are not ignorant people. We read, we research, we ask questions. So we knew the direction we were heading, and were actually just surprised that no one was willing to give us a diagnosis. Finally, I contacted a local agency for case management services (I found myself completely overwhelmed, as well as with mounting debt), and they told me that before they could help, I needed an official diagnosis. We have a developmental evaluation scheduled, but that's still a while away. My Father in Law called in a favor and got someone he trusted (a psychologist with years of experience in both private practice and the education system) to do an evaluation. He gave up a Saturday and evaluated our three boys. He gave us his preliminary findings that day. We talked about Superhero a lot—his behaviors were really affecting his performance at school, and as he wasn’t currently receiving outside services, this was the only input we were getting for him. Then we talked about Fighter, who we strongly suspected was autistic, a suspicion confirmed by the psychologist.

He told us Artist had sat for half an hour and took an IQ test—longer than any other three year old he had worked with. And then I said ‘so what do you think is going on with him?’, and with the nonchalance one expresses when requesting sweet tea with dinner, he told us he thought Artist had brain damage.

It was like he had dropped a grenade at our feet, and all we could do was stare at it until it exploded.

We were shocked, but in hindsight, we shouldn’t have been. We know what he saw that gave him that suspicion—droopy eyelids, an odd slur to his voice, difficulty searching for the appropriate words when trying to communicate.

We have more to do. There will still be a complete developmental evaluation for Fighter and Artist, and possibly for Superhero later on, as well. Artist will need an MRI and/or CT scan to confirm the psychologist’s suspicions. Then there will be data analysis and treatment plans and work work work! We will get expert opinions, where we will all but beg for guarantees from people who would love to give them to us, but simply can’t. There will be smiles and tears and screams of frustration. And it will be a long, long journey.

But for now, we are enjoying our Artist. He began drawing and painting before he was walking, and it is still his favorite thing to do. His current favorite is drawing people—circles with eyes and hair and a nose and a mouth, sometimes ears, and occasionally legs and arms. He is currently in a tyrant phase, ordering everyone about and falling into complete meltdown whenever he is told no. And when he laughs, I am sure the angels stop to listen.

Artist is like a force of nature, and it remains to be seen which direction his winds will blow. The only thing I know for sure is that I will do my best to go with him, to let him direct us to a future that fulfills him, delights him, and brings him joy.

UPDATE: The official report from the psychologist listed autism as a diagnosis, with only a brief reference to 'neurophysical symptoms'. After discussing it with him, I think the psychologist stands by his original assessment, but generally wishes he hadn't given it to me :P He is concerned, I think, that both Artist's parents and his professional staff will treat him differently if they think he has physical damage to his brain, and seems to believe that he will show substantial improvement with his current treatment regimen. We will be discussing this with the treatment team scheduled to evaluate the boys at a children's hospital soon, and will probably bring up the matter and request MRI's then.