Friday, June 13, 2008

From Small Beginnings, Come Great Things



I thought I would write a post to explain the Title of my Blog. This title is a Proverb that I read while my boys were in the NICU. It just always stuck with me.

Most of this post actually is from a talk I gave to our local March of Dimes Board Members. I revised it a little for the blogging world.

“From Small Beginnings, Come Great Things” --Proverb

Our sons, William and Thomas were born on August 4, 2006 at 26.6 weeks gestation, over 13 weeks too soon. William and Thomas are monoamniotic/monochorionic (mono/mono) twins. This means they shared the same placenta and same amniotic sac. This is a very rare condition affecting around 1 % of all identical twins. The risk in pregnancy to this type of twin is cord entanglement and cord compression because they are missing a separating membrane keeping their umbilical cords apart. If cord compression occurs and the babies are not able to be delivered, it leads to fetal death.

We found out at 13 weeks of pregnancy that our babies were only given approximately a 50-50 chance of surviving and if they did survive they would be very premature. We were told by the first high risk doctor we consulted that terminating the pregnancy would be our best option. I was horrified as this would never be an option for us EVER! It had taken us 3 years to even get pregnant. How could anyone ever consider this an option? I will never understand. Every baby deserves a fighting chance. We immediately found a new new risk OB who took wonderful care of all of us.

Mono/mono twins are usually delivered between 32-34 weeks gestation. After this time, there is more danger to them inside than out. Therefore, best case scenario is that they were to be born 8 weeks too soon.

There are 2 terribly difficult things with this type of pregnancy. One is that on a day to day basis, I never knew if my babies were alive or whether they had passed away from cord compression. I can’t describe the anxiety this caused me.

The other horribly difficult thing is that we had to make a decision as to when we felt the babies were viable. At this point of viability, I would be hospitalized and monitored with non-stress tests (NST). The babies would be delivered if they went into distress. Technically, babies can be viable at 24 weeks but rarely without major health issues. How does a mother decide the time when her babies would be better off not to be born vs. giving them a fighting chance? It is the one of the most heart-wrenching decisions I believe a mother can make. I spent many hours reflecting, praying, researching and talking with close loved ones. I was going to have to live with this decision good or bad the rest of my life and my two unborn children lives were riding on it.

I ultimately decided to be hospitalized at 25 ½ weeks gestation. I have no great reason why I chose this. It just felt right. I believe many people thought I was crazy for going in this early. Luckily it wasn’t their decision but mine. My heart just knew it was right. I was only inpatient 9 days when Thomas went into distress and our boys were emergently delivered. It all happened so quickly. I wasn’t ready to have them. Up until this time, their testing all looked great. In the last 15 minutes of monitoring for the morning, Thomas’ heart-rate dramatically dropped. I was put under general anesthesia and I did not know for a few hours if my babies survived delivery.

Luckily, they did survive. William Thomas weighed just 1 pound 12 ounces and Thomas William 1 pound 8 ounces. We were thrilled they were alive but the next 3 months in the NICU was a rollercoaster ride. ......FROM SMALL BEGINNINGS.....

They wheeled me in after the C-Section in my hospital bed. I realize now that this seemed to only happen when they didn’t know if the baby would survive. My husband waited so we could see the babies together for the first time. We immediately Baptized the boys. It was a very special moment for us. It was the beginnings of our family and at the time we didn’t know what the future held of it. The boys were so tiny. They had all the major parts just so tiny. They were just beautiful in my eyes.

We first were cautioned that the first 72 hours were critical. They would have ultrasounds to look for brain hemorrhaging. We felt like we dodged a bullet and their head scans remained clear. They could not breathe on their own. It felt like forever for them to come off the ventilators. They had some bleeding in their lungs and had to be put on a special oscillator ventilator for their delicate lungs. I didn’t get to hold my babies for 4 weeks. I believe I was still in a state of shock that first month. I met some other mothers with micro-preemies in the NICU and that helped me transition to life in the NICU.

The second month was mostly dealing with breathing issues. They went from ventilators to c-pap to nasal cannula and then finally breathing on their own. This process seemed to take forever. They had good days and bad days. It was very scary to walk in the NICU to see a team of nurses “bagging” your baby to bring him back from the brink of death. I would enter the NICU and peak around the corner to see if there was any activity in our little corner. We learned what every beep and click meant from the machines in that place. It was extremely difficult when I held my babies and they stop breathing or dropped their oxygen level and heart-rate and the nurses would have to come and revive them. I don’t know if I will ever get over that feeling of helplessness and fear. It was hard to have to ask for “permission” to be able to hold my own baby. It just didn’t seem right. This wasn’t how this was all supposed to happen.

The third month brought us 2 nasty infections and we again did not know if they would survive. Those were some of the hardest days in the NICU. The babies were obviously suffering and I felt like I did this to them. I couldn’t hold them or give them comfort. I could only just watch them in their little incubators fighting so hard to stay alive. They eventually were able to fight the infections off. They survived it but I still don’t know if I have.

Things started looking better until the day we were to bring Thomas home and a hernia was discovered and we found out instead of bringing one of our babies home, he would be having surgery. The following day William’s hernia was found and he had surgery 2 days later. It was horrible to see our babies who didn’t even weigh 4 pounds undergo surgery and end up on a ventilator again for recovery. They somehow were able to survive all this along with all the other “normal” preemie issues (ROP, elevated bilirubin, blood transfusions, etc).

We saw every baby in the NICU from when we entered go home. We celebrated with many of these mothers but our heart ached that we were not going home. We developed relationships with many of the nurses and other NICU moms. These are amazing women who got us through the hardest days.

It took 94 days for Thomas to come home and 101 days for William to come home. These days forever have changed me. It has made me believe that miracles can happen, even for us. I don’t know if words could ever really communicate what life is like living a high risk pregnancy and 3 months of living in the NICU. I find most people don’t really understand. They mean well. I just think it is just impossible for most people to understand what it is like to not know day after day, week after week if your baby is going to survive inside of you and then outside. The only people who do “get” it are those who have lived it. I am lucky that I met a nice group of NICU mom’s and we still stay in touch and get together.

The boys will turn 2 this August. They are bright, beautiful and very special. They have defied all the odds and all the world has to offer is in front of them.

I still deal emotionally with the entire experience even after all this time but I want to use it for the greater good. I am determined to make sure my boys are aware of all the amazing people who prayed for them, who took care of them and who made our miracle happen.....COME GREAT THINGS!

I am lucky to have had support from wonderful family and friends. No one should have to go through this alone. Hopefully one day, no one will ever have to go through this at all!!

9 comments:

Jaime said...

Wow! I loved reading this! I never get tired of hearing a momo story. It brings back such memories. And you had yours so early! You did a beautiful job of capturing your feelings and your story.

Glad everyone is doing well!:)

Kim said...

What a truly amazing, inspirational story. Seeing life in the NICU does change you forever. This brought back memories for me. How wonderful that your boys are home with you and healthy.
Would you consider letting me post this story on my website - or writing me another one ? I just know this will touch many readers and give them hope.
Kim
http://www.raising-twins.com

Karen said...

Kim,

You are welcome to use my story. Do you want me to email it to you or I can go on the site and post it myself.

Great site you have! Glad you found me!

Karen said...

That's an amazing story - thanks for sharing.

When our son had surgery at 4 months I marvelled at the moms who obviously had long-term babies in the ICU. There was something about them that I admired greatly, yet we never spoke a word. (Our dear boy was only in overnight.)

And I know what you mean about people not understanding if they haven't gone through something. Our son has Downs, and although people mean well they just dont' know.

God bless you and your dear family. I'm thrilled to be making shirts for your boys. :)

Jocasta said...

You story is wonderful. Made me cry as I realise how lucky we were with our girls. Thanks for sharing it.

angie said...

Karen,
I'm so glad you posted this.....the amount you all went through and came out kicking is amazing. I can't even imagine having my boys in the NICU for 2 months and then have them get life threatening infections........you are an inspiration to me!

carebear said...

I found your blog and couldn't resist posting. What an incredible story you have. You do have two little miracles. My little miracle was due on Aug 4th of this year (my birthday actually), but decided to arrive unexpected on June 5th.
I was also a high risk pregnancy, and was recommended to "terminate". But I fought for my little guys chance and he is fighting for his life now. I'm hopeful of a wonderful outcome after learning your story. God bless!

Jen Popovich said...

I'm just so sorry that we lost touch for a while and I wasn't around to help you through this in any way you might have needed! So glad you have such handsome healthy boys!

Connie said...

Such an amazing story, I know it gave me a lot of hope while I was pregnant with my momos!!