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Thursday, May 3, 2012

Jonah and Ben's Birth Day

This is one of my most favorite pictures of Ben and Jonah. They are giggling because I sang the ABC's to them in a silly voice. So easily amused.

Several times in the past few years, people have asked me to write my "story". I haven't ever attempted to do this because I didn't know where to start. And it is so painful to relive the details of my twins' first moments and days. I knew that if I started writing our story, I would vividly remember it and all the emotions would come flooding back. The event of my boys' birth is joyful but also so very painful, I haven't wanted to relive it and retell it. Until now. I am ready for the memories to wash over me. I used to not understand why people wanted me to tell my story, and I still don't know if anyone will want to read about it, but it's somehow important for me to tell it now. I want it put together on the page, once and for all, so I can conquer the pain of it. I have worked through a lot over the years, but putting it all down to read and re-read seems like it could push me even more toward healing. So as I sit here and the tears already roll down my cheeks, I'm ready to open that wound, because the amazing gift of life with Ben and Jonah begins here.

August 8, 2002. 2 am. My world was forever changed. Our twins were not due until late October, although I knew that multiples usually come early. The night of August 8th, Alex and I had been out to dinner, and then had come home and read before bed. I read my "What to Expect When You're Expecting" book, the part about what it might feel like when your water breaks. At 2 a.m., I woke in absolute terror as I knew my water had just broken. I called the doctor, who said if my water had really just broken, we needed to go to a different hospital than we had been planning to deliver at, because our chosen hospital couldn't handle babies this premature.

I have never been in a car that was driven as fast as Alex drove that night. I sat on a plastic garbage bag on the 45 min drive to the hospital, which I am sure only took 15 minutes that night. Luckily there was no traffic since it was the middle of the night. Alex was fully focused on getting me and his unborn babies to the hospital, and nothing was going to get in his way. He was completely alert, ready to drive us safely (although crazy fast) into the hands of the doctors who waited for us. When we got to the ER, they checked to make sure my water had broken, and then admitted me. They began drugs to stop my contractions and steroids to help the babies' lungs develop. The medication to stop labor made me very sick. I remember throwing up as a doctor was standing there talking to us about something I'm sure was important, and no one (except Alex of course) seemed to care that my insides were being completely wrenched out of me. The doctor just continued chatting. I also remember the look on my OB's face once I was checked in and drugged up. He said slowly and ominously "It's too early, Carrie. It's just too early." Nice pep talk. Like I could do anything about being in labor! He made me feel desperate because I couldn't do anything at all to save my babies. It was out of my hands. All I could do was depend on the doctors and nurses to save me and my babies who we loved so intensely already. 

At this point, I shut out the world. When I am tremendously stressed, I "hunker down", as I call it. I gather all my strength from somewhere deep inside, and together with Alex who is always my rock, we face what is heading our way. When I hunker down, I can't be distracted by anyone else, or the outside world. It's like it's me and Alex against whatever terrible thing is coming, and in order to survive that, we have to pool our strength without letting it seep out the corners. I didn't want to see my family while I was in the hospital because I knew I could not be strong if my Mommy hugged me or my Daddy kissed my forehead or my little brother came with love in his eyes. I could not afford to lose it emotionally more than I already was, because this was the fight of my life and I was fighting for the survival of my babies. My childhood shaped me to become who I am today; both positive and not so great things about me were formed all those years ago. And this is how I learned to deal with extreme stress and fear- I hunker down. I get through it on my own. And now with Alex by my side. I'm deeply sorry for any pain I caused others by not allowing them into our life during these awful days in the hospital, but I had to get through that time the only way I knew how. I have never had to deal with such a dark, terrifying, unknown before, and I don't think anyone can handle such intense fear gracefully. I know my family now understands the decisions Alex and I made when the boys were born, and has always loved me just the way I am, and for that I'm so grateful. 

The doctors were able to stop labor until August 11th. The night of the 10th, I was moved from the labor and delivery area where they had been keeping me to the bed rest-waiting-mom area, where I would hopefully remain pregnant for as long as possible. I did not have a good feeling about this move. I just knew this was not good. Alex finally went home. He needed to rest on something other than a chair in my hospital room, and he needed a shower (although I'm positive I needed one more than him). 

At some point during the evening, I needed to use the bedpan. A nurse came to help me and said to call when I was done. I pushed my little Nurse Button when I needed her to come back. Someone answered but no one came to help me. I pushed several more times, begging for someone to come and help me move off the full bedpan. I wasn't supposed to move at all on my own, but I started having contractions again and felt like I needed to push. I painfully and slowly moved the bedpan out from under me. I was finally able to get a nurse to come. I was crying in pain from the intense contractions, but as she hooked me up to a monitor to see what was going on, she said I wasn't having ANY contractions!! I wanted to smack her across the room. I know this was my first pregnancy, but no matter what your little doohicky machine says, I KNOW what a contraction feels like! More nurses came. I was still crying and writhing in pain. They filled my IV with fluid, trying to stop the contractions. But the pain kept coming. Finally someone thought to check and see if I was dilated. Then I remember a crazy flurry of activity. The nurses were all yelling at once. Some yelling at me not to push, the baby was right there. Some yelling to page the OB. Some yelling to get my husband. All the while running with my bed-turned-into-gurney towards the operating room. I was in so much pain. I didn't know what I was supposed to do, so I just tried to squeeze those little babies in with every ounce of my body. 

The nurses rolled me onto the operating table and the anesthesiologist said not to move as a nurse hugged me to her. YOU try not moving while you're having contractions with twins at 29 weeks and your husband and your doctor are nowhere in sight. Relief swiftly flowed through my body as I lost the feeling of the contractions. After my spinal, I groggily and gratefully said "I don't know what you just did, but I LOVE IT." The room was filled with laughter. Then I saw my OB's eyes above her mask float into the room. I kept asking for Alex, and they said he was on his way. He finally was beside my head in his scrubs, touching my hair and asking what had happened. They started the surgery to save my two small boys. I felt tugging and pushing and pulling but no pain. The room was hushed as I quietly told Alex what had happened with the bedpan and the nurse that never came. 

While I was pregnant I had asked my doctor if Baby B was ever born first, or was Baby A always the oldest. She had said no, Baby A is always born first. Ha. Not true! Baby B, little Jonah Alexander, entered the world four minutes before little Benjamin Justin. They wrapped Jonah up and let me kiss his little alien face before they whisked him away. He didn't make a peep. I knew something was wrong when they got Ben out. They didn't let me touch or kiss him. They showed him to me for a millisecond and then took him away. He didn't make a sound either. I later learned he had been stuck down the birth canal and the doctors had had to push him up into the C-section to get him out. He was born black and blue from head to toe. What a way to start your life. He was put on a ventilator for 10 minutes. Jonah never needed a ventilator. In the NICU, people couldn't believe our luck. Even now when I tell people about our lack of ventilator experience, most people are shocked. We have little fighters. Thank God for that.

Ben and Jonah were born 11 weeks premature, weighing 2 lbs, 2 oz and 2 lbs 6oz respectively. They had not yet developed a layer of fat under their skin, so their skin was translucent. Alex's wedding ring could fit over their thighs. They had no hair, no eyebrows. The boys looked like scrawny, sharp, intensely weak and vulnerable aliens. We weren't allowed to hold them for a day and a half. We could touch them through their incubators, where they lay stretched out under lights to help their jaundice, with little sunglasses strapped to their bald heads that looked five times too big for them. Not being able to hold my babies was one of the worst times of my life. I wanted to rescue them from this place that was filled with tubes and needles and lights and beeps, although that place was saving their little lives. I thought that while the medical interventions were obviously necessary, all my boys ultimately needed was to feel Mommy's heartbeat, smell my skin, feel my warmth, and they would start healing and growing. It turns out the NICU agrees with that, once the babies are stable and strong enough to be touched and moved. After a few weeks, I got to do Kangaroo Care with the boys, where I got to hold them skin to skin. This was pure heaven. Both for me and for the boys.

The boys were hooked up to heart monitors and breathing monitors, and alarms sounded when they stopped breathing or their hearts stopped beating. Which was constantly. For the first couple days or weeks, Alex and I were absolutely terrified when the boys' alarms went off. Nurses would tell us not to worry, the boys will start back up on their own. Inside I was screaming for the nurses to RUSH to my boys who I was sure would die every time an alarm blared. After a while you get used to those alarms and you can tell, even though you're not a trained professional, when there is an alarm to worry about and when it's really nothing. 

When the boys ate, they were especially vulnerable to having heart and breathing problems, so for a long time they were fed through a nasal gastric tube. Coordinating sucking and swallowing is a complex skill necessary for bottle or breast feeding, and a skill that the boys took a very long time to develop. 

The nurses told us we could bring in pictures of ourselves, portable CD players with small speakers, little things from home. We did all that. Anything anyone suggested, we did. You never know what's going to help those small beings gain strength, so we did everything we could think of. We brought music, little pictures, small things from home. It was so depressing to turn on the boys' CD's as we left the hospital for the day, piping Baby Bach or lullabies into their isolettes while we abandoned them for the night. But we did it every night. We would give them a kiss goodbye, a little loving pep talk about how to get stronger that night, turn on their music, and walk away with tears in our eyes.

Jonah was in the NICU for 6 weeks, and Ben for 8 excruciatingly long weeks. It was so impossibly hard to leave my fragile babies at the hospital and go home without them. Words cannot describe that feeling. Leaving that hospital with my arms empty. I had imagined leaving with arms full of two sweet, chubby babies, everyone 'oohing' as I was wheeled down the hallways in my mandatory wheelchair with flowers and balloons around me. Instead, I left my four-day-old babies who seemed to face death every few minutes with strangers. While I was driven so far away from them. Me, the only person they had ever known, being driven a lifetime away from them. It absolutely broke my heart. So I went back to that hospital every single day. I spent all day every day there. It became my life. I wasn't able to bring my babies home, but I was able to show up for them wherever they were. I suddenly realized one day early on in the boys' hospital stay that I needed to remember every single detail of that time. I didn't have anything to write on except the napkins from my cafeteria lunch. So I wrote on those napkins. I still have them. Every little detail about my boys' accomplishments and setbacks. I wrote on those napkins for several days because I never had time to buy an actual journal. I treasure those napkins.

Jonah and Ben's survival seemed to be a minute to minute struggle. Sometimes they would have a good day, eat well, have few heart or breathing issues, and gain weight steadily. Other times I'd come in to their little NICU nursery, having left them in good health just hours before, and there would be a flurry of doctors and nurses around their incubators. Sticking tubes in them, sticking needles in them, bright lights piercing their eyes, everyone trying to fight and save them from some new infection that was looming. I called the NICU every night before I went to sleep to check on the boys. What had their weight been that evening? How many cc's of my pumped milk did they drink? Did they have a bath? But I think I called every night ultimately to make sure they were still there, still breathing. That my sweet helpless preemies were still alive. It was a roller coaster for 8 long weeks. The ups and downs didn't end after 8 weeks, but with the boys at home, at least we could try to assemble a life, a routine, a family.

The day came to bring Jonah home. Ben was still too small and weak, but Jonah was ready. He weighed just 4 lbs. I remember walking out with our favorite nurse we called "Barbie". She carried Jonah in his carseat and we waited for Alex and the car to arrive as we stood outside together. Barbie had been there every step of the way for our little boys. She was no-nonsense, maternal, funny. She would tell me when to worry and when there was really nothing to stress about. I trusted her because she knew more about my boys than I did at that point. I didn't know what I was going to do without Barbie's constant supervision and help. She knew how torturous it was to take Jonah home without Ben. I couldn't imagine the boys not being together, or me not being at the hospital with them every minute of daylight. I was overjoyed to finally be bringing my baby home, but devastated to still be leaving one at the hospital. 

When we got home that first evening, I gave Jonah his first bath at home. He was so so small. I got a little tub and put it on the kitchen table. I made sure he stayed warm as I bathed him and finally comforted him the way I had wanted to for 6 weeks. I dressed my sweet little first-born in a blue preemie jumper from the Gap, which was way too big. I wrapped him in a soft blanket, and held him and didn't let go. No nurses. No doctors. Just me. Finally home with my baby. He still had his apnea monitor, so I felt reassured that if he needed medical help, the monitor would alert me. Several times the boys' apnea monitors would sound, and they were in fact fine but had wriggled out of the band that held the wires in place. My heart stopped each time I heard that alarm and I would rush from wherever I was to the boy whose alarm was screaming. Even if my son was obviously fine- moving, breathing, crying even, I would still pick him up and feverishly check him for any signs of distress. It was not a fun way to live, always on edge. But my baby Jonah was home, and that made my heart feel so full.

I couldn't completely rejoice, though, because poor little Ben was still stuck at the hospital. I will never forgive myself for the one single day I was not able to get to the NICU to see him. One day in eight weeks may not seem that important, but to me it was 24 hours where I couldn't get to Ben. He wasn't able to be held by his Mommy, he wasn't able to hear my voice or feel my kisses on his little bald head. I did the best I could, balancing motherhood with one little baby at home who was medically fragile and all mine to keep alive, and one baby at the hospital who was medically up and down, and away from me. The nurses always told me I should take a weekend off from coming to be with the boys. I should take a week even! I should go away with Alex and just relax. I could not even believe those words when I heard them. I didn't know from one moment to the next whether my babies would be sick or in crisis or fighting for each breath, and although I know the nurses meant well and were trying to watch out for me and my sanity, the thought of leaving my babies for a few days was just ridiculous! You don't just leave your babies! You show up for them wherever they are and fight for them and love them and make sure they know you are there with every molecule of your soul to protect them and make sure they live. Take a weekend "off". Whatever. 

The day Ben was finally, FINALLY supposed to come home to complete our family, I came in to get him from the NICU. He had passed all the necessary tests. He could sit in his car seat without passing out. He was able to drink from a bottle on his own, and not use too much energy doing it, so that he was actually gaining weight. He had been infection-free. He was growing. He was finally coming home!! I wouldn't have to tear myself in two, trying to be home with Jonah and rushing to the hospital the second Alex got home to be with Ben. I came to get Ben that morning, bursting with hope and expectation. 

I found him in his isolette with an IV in the top of his head. He had another infection. They hadn't been able to find a vein anywhere except for his poor little head. I couldn't take my baby home. The nurses knew me by that point, after 7 weeks together, and knew I wanted to tell Alex as soon as possible. They also knew this was going to send me over the edge. I called Alex, and managed to say that I had to tell him something before I burst into gasping tears. I kept telling him through my tears that "everything's ok" because I knew he would think the very worst if I didn't explain why I was crying. I had to give the phone to a nurse to tell Alex that Ben couldn't come home yet because I was crying too hard to talk. After clinging to hope for so many long long days, and finally thinking I could have my boys together to take care of, and then finding my poor Ben not only sick again but with an IV in his head, it was too much. Just too much. I couldn't bear it anymore. 

I cried only two times in the NICU while the boys were there. This was one of those times. I cried every single day that they were in the hospital, but I saved up my tears for the pumping room at the hospital or for the lonely drive home without my babies in the rear view mirror, or before we fell asleep at night. I cried a lot of tears in those weeks, but only twice did I lose it in the presence of my boys. Instead, when I was with them, I focused on loving them and holding them. Learning how to take care of their medical needs. Feeding them and bathing them. I focused on showing them I was there for them, that I would take care of them forever and make the world a safe place for them to be.

The other time I cried at the NICU was when Jonah was really sick. They couldn't figure out what was going on with him, where his infection was coming from. The doctors finally decided to give him a spinal tap. How you do a spinal tap on a baby weighing less than 3 lbs is beyond my understanding, and the sheer horror of thinking of my tiny baby having to go through that sent me over the edge. The doctor told me Jonah would need a spinal tap. They asked me to leave the room, but I asked to be there, at least within a few steps of Jonah, while he underwent this painful procedure. The doctors got everything ready, and they let me stand near Jonah's isolette. I didn't watch what they did, but I was there if my baby needed me. I didn't want to stay, but I had to for my baby. I was doing a pretty good job of holding myself together, although I was on the very edge of tears. After the spinal tap was over, Jonah's main doctor came to talk with me about how Jonah was doing. He asked me something I will never forget: "What is your biggest fear?" I burst into tears. I just cried and cried, and there was no way I was going to put into words what my biggest fear was, even if I could stop sobbing uncontrollably. Dr. Greenglass said "Is your biggest fear that your boys won't make it?" I nodded. He looked me in the eye and assured me that my boys would be ok. He said I can tell you that they are going to make it out of here. They are going to go home with you. They are going to drive you crazy someday. They will be ok. They will have jobs someday. They will be fine. Your boys will make it out of here. 

I couldn't thank him for giving me that hope because my tears were too overpowering. All I could do was nod. The swarm of doctors left Jonah and me alone, and I sat on a little stool in the corner of the NICU between Jonah and Ben's isolettes, and just cried. The nurses all left me alone and I cried until I couldn't cry anymore. Because I was so terrified that my babies would die. Because I was terrified about their futures if they did make it out of the NICU. Because I was terrified about taking care of two medically complex, fragile babies all by myself. Because I didn't know what the future would hold. And because Dr. Greenglass had told me that my babies would be ok. And that, more than anything, ever, was all I wanted. 

Ben finally did make it home. The day I brought both of my boys in their carseats out to the light of day with Barbie was a truly joyful day. I rode in the backseat in between my sweet little babies, so that I could comfort them if they got upset or scared on the way home. I didn't let go of their hands the whole way. When we entered my parents' house where we lived in their basement apartment, my mom took a picture of the four of us, finally bringing our two little boys home together. I love that picture. On my face is written relief and exhaustion and joy.

At least in part due to their prematurity, Jonah and Ben have had developmental delays, fine motor delays, gross motor delays, and sensory processing disorder...they do not have any problem with speech or cognitive ability, so we feel very lucky. Both boys had retinopathy of prematurity (eye problems from prematurity), but not too severe. The boys both came home from the NICU on caffeine (to keep their hearts beating and lungs breathing) and with apnea monitors. Ben has a heart defect and was born with hearing loss. He's had tubes put in his ears twice, and had his adenoids and tonsils removed because of the severity of his snoring. 

After Jonah and Ben had been home for a few weeks, we had a developmental therapist from Early Intervention come and evaluate the boys. After she gingerly worked with their little bodies, she told me basically they were too little to have therapy at that point. They needed to grow and get bigger, and then they definitely would need therapy. (She failed to mention how many kinds of therapies and how many years of therapies they would need!) She told me too that I was doing the perfect thing for the boys by creating a cozy environment. I had the lights dimmed, the music very soft. There were no loud noises or bright lights, like at the NICU. Keeping the environment so calm would help the boys' nervous systems do some much-needed healing and developing. Being in the NICU when you're so premature is extremely hard on a nervous system, so our cozy warm home was just what the boys needed.

From the time Ben and Jonah got out of the NICU and grew a little, they have had therapies of all shapes and kinds. First through Early Intervention, then through their At Risk Preschool, then privately and in elementary school. With all the challenges preemies face that we had been warned about and watched for --eye problems, kidney problems, brain bleeds, physical delays, cognitive delays, speech delays-- as a parent, you learn to just wait and watch for what might be coming next for your preemie. Prematurity truly affects every single organ and system in a body. It is a complete miracle that any human can survive being born so tiny. It boggles my mind that our boys survived at all, let alone that they have done so well considering all the odds that were against them.

From the beginning of my Motherhood Journey, I knew I was going to do what I thought was best for my babies and our family. I didn't care if nurses thought I should take a weekend off, I wasn't leaving my babies any more than I already had to. I didn't care that I had two babies on apnea monitors that were too fragile to go out and socialize. I didn't care that I was alone most of the time taking care of them. I would lug two babies in their carseats, one in each hand, one apnea monitor over each shoulder, and a bulging diaper bag looped over everything, up the two flights of stairs from the basement apartment we had in my parent's house, to the light of day. The boys and I would frequently head out for drives to the Starbucks drive thru, because Mommy needed to feel some small morsel of life beyond babies. My dad would bring me treats from Dairy Queen sometimes too, which was one of our favorite places to stop and eat on long drives when I was younger. I would take my babies to the grocery store, carefully covered up so they didn't inhale any germs that would send them back to the NICU. I would put one baby's carseat in one grocery cart, and the other baby's carseat in another cart. I wasn't about to balance the carseats on the cart handles- that doesn't look very safe, and I had just gotten my babies OUT of the hospital. I wasn't about to do anything to put them back in! So I would push one cart with one hand and pull the other cart with the other hand. I was not going to let having preemie twins limit me! 

It was a lot of work, but those little things I did with the boys every week showed me that we could live life. We didn't have to be stuck at home, waiting for the next medical crisis. We could be mobile, even if it was just me and the boys. We could get up the stairs at Mom and Dad's, we could get in the car, and we could go see the world. Or at least the Starbucks drive thru. I didn't know anyone in the area besides family. I didn't have friends around me. I didn't know anyone who was dealing with what were going through. All that would change over time and I would meet some amazing moms who also had twins, and we would become fast friends. But at that point, all I knew was that I had my babies home. Dr. Greenglass had been right -- they would make it out of the NICU. 

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