Sunday, September 19, 2010

Reunited with our friends from the NICU

I made a good friend during my stay in the NICU. Her name is Catie. The first few days after my babies were born, I was an emotional wreck and my mom and I went to a "Good Beginnings" meeting which is a support group for parents of the NICU. The only person in that meeting that day was a woman with awesome kinky curly hair and a great british accent. She looked very tired and very stoic. She seemed as though she was in shock. I on the other hand couldn't control my emotions. My hormones were bouncing off the wall and I had no control over where and when I would cry. This felt like a good place to share, so I let it out. I just cried and shared how overwhelmed I was. I talked about how I was scared that I could lose my babies, that they were shocking to look at and that I just didn't know how to handle it. That was when I learned I wasn't alone. Catie had just given birth to boy and girl twins as well and they were 2 weeks early than mine. To make a long story short, we became friends. We would email each other, see each other in the pump room and were always a support to each other. We vented to each other, laughed with each other and it felt good to find a friend that understood.

I always told her and her husband that my goal was to see them on the outside. We would all get together when our babies were strong, healthy and thriving. I held on to that thought every day. It's been 8 months since we met and today we did meet up on the outside. We brought our families to a park by my house and had a picnic. It was wonderful. Her babies are adorable! I saw them when they were less than 2 lbs and Malik had been through 4 surgeries! Now he's strong and healthy. Kamali is just a little beauty with this adorable little mohawk. She's crawling now.I knew this day would come. It's amazing how you can be so grateful for a simple picnic in the park with new friends that feel like good old friends.

Tuesday, September 7, 2010

Disconnected = Connected

We have a serious addiction to computers, pdas and anything else that has a screen. I decided since it was a 3 day weekend we needed to get out of the house and be in nature. We took the babies to Griffith Park for a family picnic. Of course, my plan backfired as we were swarmed by bees. My husband took a sip of his drink which had a bee in it and got stung on his tongue. So much for our outdoor adventure. But the one thing I can admit is that the more we disconnect, the more connected we are. I think I'll make it a standing rule in our house that we have to disconnect as often as we can. That being said, this will be a short entry as I'm going to disconnect for a bit and reconnect with my hubby. Good night!

Tuesday, August 24, 2010

It's been 7 months, but whose counting?

Just got back from a dreadful doctors appointment. Two babies equals 6 vaccines and lots of crying. I survived, not that I'm the one that experienced any pain! The doctor is concerned about Sebastian. Sebastian has low muscle tone and is developing a bit slower than an average 4 month old baby. Should I worry? No. What is the point. My son is perfect. His personality could charm the pants off anyone. He's gentle, loving, flirtatious, smiley, kind, and loves to laugh. So what if he gets a little tired during tummy time. I know one day he'll crawl. I know one day he'll walk. Those things will come. We will teach him. But you can't teach someone how to be innately good. You can't teach someone to have charm and personality. If he wasn't able to laugh, then I'd worry. So he's 7 months old, but who's counting? He'll become his own little person in his own time and I'll be there cheering him on along the way.

Wednesday, August 4, 2010

Life in the NICU

The NICU became our home away from home. We got in a routine. JP would go off work and I would head to Cedar's Sinai where our babies shared a room with 8 other babies. JP and I would meet for a dinner date at a fun restaurant in Beverly Hills from 7-8 as that was the one hour that the NICU was closed to parents. In keeping with the theme of positivity, we knew that once the twins would come home, dates would be non-existent therefore we decided to take advantage of the "free childcare" and spend quality time with each other every night. Then we would go back to the NICU together and have family time. Those nights were so precious. Once the babies were big enough, they'd let us take them out of their little, glass boxes and he'd hold one and I'd hold the other. We'd trade babies so we could equally bond with both and finally I felt the same bond with my tough little man as I did with my sweet liitle girl. I had the most amazing family in the world.

Some families would only spend a few days in the NICU (Neo Natal Intensive Care Unit). Others were like us and spent weeks and months there. I would make friends in the pumping room and the library where parents would go to take a break, have a snack and just catch their breath. We'd all check in with each other and wish each other luck and say little prayers for each other with the hopes that there was some greater spirit that was looking out for our little ones. I began to bond with many of the mom's in the NICU and found that they were the only ones that could really understand what I was going through. We would exchange email addresses and send each other long emails venting all the emotion that was built up inside. We were all exaughsted, both physically and emotionally. But as all new parents must do, we had to put needs on hold and put our children's needs first. It didn't make us exceptional people, we were parents and that is just what you do. I would take breaks for lunch but would spend the majority of the day talking to the nurse assigned to my babies, participating in dr rounds 2x a day, and being as involved as I could. I learned what every alarm and beeping sound meant. I learned that bradycardia meant the heart sped up or slowed down to dangerous levels and that a desat means the oxygen level dropped too low and the baby had trouble breathing. I learned about pic lines, iv's, that caffeine is given to babies to stimulate their hearts, that if a baby doesn't stool within a certain period of time they will need surgery to unblock the bowels. I learned about herniated belly buttons and feeding tubes. I could be a NICU nurse. I had a crash course in neonatology.

As my babies grew and were able to regulate their own temperature, they graduated to open air cribs. This was a huge milestone and finally there was no glass box between myself and my babies. I could reach in and touch them. I could pick them up whenever I wanted. I felt a new sense of freedom. They were fed through a tube in their nose as they were too small to develop sucking skills, but we started to feed them once a day by PO which means by mouth via either breast or bottle. Then we increasesd to twice a day. Then to every other feed until they were able to eat on their own. This process took weeks and little by little I became more and more involved in their care. Finally I was beginning to feel more and more in control of their care. I was beginning to feel like a mom.

This is not a tragedy, this is a miracle!

My children were born 2.5 months early. I write this for other women who are going through the same thing. They will experience a roller coaster of emotions and I hope my story helps others deal with the emotions they will encounter.

The day I met my children was not the happiest day of my life. It was one of the hardest days of my life. It is difficult to admit the truth. I felt overwhelmed with emotion but not the emotion we dream of when we imagine giving birth. I was overwhelmed with fear, shock, and a bit of self-pity. My son Sebastian was still a fetus. He was tiny. His leg was the size of my finger. I could see his ribs. His skin was transparent. I was scared. My husband made me feel even worse as he seemed to be blinded by love and no matter how under-developed, pale and fragile Sebastian was JP was a proud papa and was beaming with happiness in his son's presence. I was not allowed to hold my son and I need to so I could bond with him. I was deeply saddened. This wasn't how it was supposed to be. I felt like a terrible mom and the tears would not stop coming.

My daughter seemed a bit more like a baby as she was a pound bigger. I couldn't see her face for almost 2 weeks with all the medical equipment that helped her breath but I fell in love with her little body especially her hands. The way she arched her fingers and stretched melted my heart and as she was bigger I was allowed to hold her for 30 min a day. I bonded with her as I held all three lbs of her skin to skin. My husband told me I loved her more than I loved my son and I was filled with anger, guilt and sadness as I did feel a different bond with her. She was more like a baby than a fetus. I could hold her, feel her melt into my body. Again, I was burdened with the feeling that I was a horrible mom.

The first week both of my babies lost weight. How could this be? They have no weight to lose. I would get stats twice a day on their weight, temperature, if they stooled, heart rate, blood pressure and oxygen levels. They had monitors connected to all the vital organs and monitored every breath, heartbeat etc. I became dependent on those monitors and starred at them religiously. Alarms would sound constantly and with every beep my nerves would shoot through the roof. Is my child breathing? The nurse would say, "there was a defib but it was self resolved" or "your baby had a Brady (short for bradicardia). They were throwing around medical terms like it was there job. And it was their job. My job was to be my babies advocate and become as knowledgeable as the NICU staff. I learned that along the way, but that first week I just cried a lot. I didn't leave their little bedsides. They were supposed to be in my body so they needed to feel my presence. I was just taking it in and dealing with the shock.

The day I was discharged from the hospital was another very difficult day. I was well enough to go home, but my babies weren't. My husband had to work, so my mom wheeled me down to the car. I held two balloons in place of my twins that said " it's a boy" and "it's a girl". I sobbed as she pushed me in the wheelchair down the long corridor. How do you leave your babies in the care of people you don't even know? How do you leave your babies period! I felt that everyone in the hospital starred at me with looks of pity. I know they all wondered what happened to me and to my babies. I was going to be in a separate building from them. I didn't know how to be apart from them and my hormone levels were at an all time high.

I got home, unpacked my stuff and went directly back to the hospital. I couldn't be apart from my tough little Sebastian and Daniela's beautiful little hands. For three days and three nights the tears kept coming until finally my husband, also known as my rock said to me, "I know it's hard to leave them, but this is not about you. This is about them. This is about us supporting our children and giving them what they need to grow, develop and get healthy." I was pissed. "Screw him" I thought. He didn't carry them in his body for 7 months. His body didn't fail them. His hormones were all in check. Who is he to tell me that it wasn't about me. He would never know how scary it was to have a life threatening illness. He will never know how traumatic it is to be rushed to surgery let alone be awake while they cut you open. He is a man. He didn't have to deal with anything.

The next day I returned bright and early to visit my children. As I sat sobbing next to Sebastian's incubator I started to process my husband's advice. He was absolutely right. I wasn't helping my children by crying next to them. My father is a physician and I remembered him telling me about studies that showed that positive people have a higher rate of surviving cancer and serious illnesses. That was the moment I changed my attitude. I came up with three words I would recite to myself everyday... patience, acceptance and positivity. I promised My children that day that I would have the patience to let them grow and develop in their own time. I promised them that I would accept the situation for what it was and I promised to always be positive around them as I knew that was the best medicine for them. From that moment on, I sang to them, read to them, touched them as often as I was allowed, held them for the maximum time allowed, and smiled every time I was with them. I realized this was not a tragedy! This was a miracle. I have twins! I have a baby boy and baby girl! They aren't dying, they are living and I am the luckiest mom alive. I could have lost my babies and I didn't. They were just small. The pity party ended and the celebration of new life began.

Saturday, July 31, 2010

The plan is... there is no plan.

"The plan is, there is no plan".  These were the words of my OB, Dr. Katz when I got pregnant with twins.  I had a rare disorder that they called a uterine anomaly so the fact that I was pregnant was a miracle and the fact that it was with twins was a big concern to my Dr.  He knew the risks and he realized this was a high risk pregnancy.  He asked me to think about reducing to one as he was concerned that my body would not be able to carry both, but I had fallen in love with the little heart beats inside me and reducing to one was not an option for me.  I wanted to know exactly what would happen when it was time to give birth.  Would I have a c-section?  Would I have to go through labor?  Would I give birth naturally to TWO babies?  The whole idea of giving birth scared the shit out of me and I wanted to know the plan.  He told me, "The plan is, there is no plan and I don't negotiate with terrorists."

As we got closer to the date, he told me that if I can give birth naturally, it's always ideal, however we will do what is in the best interest of my health and the health of my children when the time comes.  So the plan still was... There is no plan!  Ugh.  I later learned that my Dr was a very wise man.  I am so grateful that I didn't get my heart set on a birth scenario.  My children's birth story is nothing like I could have ever imagined.

Everything went wrong that could have... I had an amniotic fluid leak which left my son without any fluid in the placenta that was holding him.  This caused him to stop growing and he was now 6 weeks behind my daughter developmentally. In addition,  I had severe pre-eclampsia which a life threatening illness when your body becomes toxic and your organs begin to shut down.  The only cure is to deliver the babies.  My Dr. sent me to the hospital for observation, gave me steroid shots to help my babies lungs develop and was planning on keeping me there for two weeks to make sure I was safe.  My husband had the flu and was not allowed in to see me.  My mom happened to be in town and she came every day and sat with me.  I was terrified.  I sat and listened to the monitors constantly, focusing on the beating of my son's heart.  I knew my daughter was ok.  I could feel her kicking away, but I no longer felt my little boy and the only way I knew he was alive was to listen to his heart beating and to watch the monitor.  They kept a blood pressure cuff on my arm that took my bp every 15 minutes.  When my blood pressure was too high, alarms would sound and that happened more often than I was comfortable with.  On my 4th day in the hospital, my water broke and they rushed me to the OR for an emergency C-Section.  It was too early.  My babies were 2 and 1/2 months away from the due date.  I have never been more terrified in my life.

This was the beginning of the next six weeks of our stay in the Cedar's Sinai NICU and the beginning of the scariest, hardest and happiest time of my life.