Fighter

(Some of this is identical to Artist’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

Fighter was Baby A. 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. Fighter was bigger than Artist 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.

Fighter gave a strong wail and then peed all over the doctor--an act his twin repeated two minutes later. The OB insisted this was a good sign though, and handed him to the pediatrician to deliver Artist. The room got incredibly quiet a few seconds later, and there was a lot of whispering going on. Fighter didn't have enough blood in his body and was having some difficulty breathing. He needed an IV and some oxygen. This was our first hint that the twins had twin to twin transfusion, a condition in which one twin 'vampires' from the other, with one being born with too much blood and the second with too little. Twin to twin transfusion usually only occurs in identical twins with a single placenta. After delivery, my OB took quite some time examining the placenta, even at one point holding it up to the light. He told me later that he was unable to determine if it was a single placenta or two placentas that had fused. In either case, and despite the fact that I am now mostly sure my twins are fraternal, it is clear that they did in fact have twin to twin transfusion.

A further exam by our pediatrician revealed that Fighter also had a few cosmetic birth defects (such as being tongue tied) and a more worrisome heart murmur. My OB kept me fairly well drugged for the rest of the day--from the behavior of the nurses, I suspect the prescription said 'give her more medication whenever she becomes remotely coherent'--so while I kept asking about my little Fighter, I spent most of my time unconscious, snuggled into the hospital bed with Artist, with family members close by to grab him whenever I nodded off and allowed them to do so. Hubby, on the other hand, stayed by the oxygen tent, talking to our little bundle and telling him to fight. The nurses brought him to me wearing oxygen when he was just a few hours old so that he could nurse. His O2 saturation kept dropping, and when it hit the magic number (I want to say 80) they whisked him away as if he had never been there, but for a few brief moments, he latched and nursed and looked into my eyes, and I fell in love in the most heartbreaking way possible--I knew this child now held my heart in his teeny, tiny hand, and there was nothing I could do about it.

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 Fighter was 6 pounds 6 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.

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. 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--while our son was not the 'extreme' that is the stereotype for autism, there was still something different about him, and I wasn't sure what it was.

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, the boys 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. And he told us Fighter has autism.

We were not surprised. We were upset, but only because we know the work that is ahead of us, and because no one can guarantee that Fighter will ever live on his own or have an independent life. I have read a lot of blogs and stories written by parents about finding out their child was autistic, and there are lots of variations on 'our whole world changed' or 'life as we knew it ended.' Many experts even suggest a mourning period, to allow the parents to 'grieve' for the child they lost. I didn't feel any of that. We were thrown, don't get me wrong, but it was more from confirmation that all three of our boys were special needs, and the shock of getting that information all at once, than from the diagnosis itself. Fighter was the same child after the evaluation as he was before the evaluation. The only thing that had changed was that we now had an inkling of how much work was ahead of us, and we no longer could hold out hope for the 'bad parent' diagnosis (the one where the expert just says "oh, the child is fine, you just need to do this this and this to become a better parent and all will be well").

Fighter is an amazing child. His view of the world is so unique, so amazing, that I feel blessed to be able to share it with him. And he is a fighter. If anyone can overcome hardships, it's my little Fighter. He's been doing it since before he was born, and that skill will serve him well for the next 80 or 90 years :D .

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