Dynamic Duo Turn 3

I cannot believe my babies are three. Every time I call them my babies they kindly remind me that they aren’t babies anymore, that they are big boys. And they really are. Everyday I am amazed at what individual people they are becoming. 

I wish I could slow down time. I used to sit in the NICU and pray for these days, days outside the hospital walls. I was constantly thinking to myself, if we can just make it to 3 months or 6 months or to their first birthday we would be okay. And, as crazy as it sounds there are days I wish I could start all over again. If I knew then what I know now I would go back to August 1, 2012 the day Luke and Jake came home from the hospital and I would really enjoy our early days. I was such a nervous, scared, sleep deprived mess that I was in survival mode. Now in fairness, twins are a lot of work especially when they are hooked to oxygen tanks and monitors and sometimes survival mode is the only option. But, I spent way too much time on the Internet reading about all of the terrible outcomes that could have been instead of taking it all in. And guess what, all those terrible outcomes that could have been? They aren’t. That’s not to say that there aren’t struggles and that things are perfect but from where I’m sitting, it looks perfect to me. 
The rain and a cold attempted to ruin our little birthday party but we didn’t let that stop us. We moved inside and celebrated anyway. I had taught/trained the boys to say that when they turned three they would go potty in the big potty and they would stop using their pacifiers. Well turns out that didn’t quite work. Potty training and pacifier weaning are both on the to do list. Here are a couple pics of the big birthday! 

   
   

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We’re Back!

After taking a little blogging break, I am back. The blog has been getting crazy traffic. Traffic that I never expected. And honestly it’s been a little overwhelming and I felt major pressure to write something of importance which made me even more overwhelmed. Vicious cycle I tell ya!

Any way, I will just stick to what I know. This little corner of the Internet was originally created to give other scared to death moms some hope and I hope that it has served that purpose. It was also turned into a great way to document our lives which seem to have been flying by lately.

Because of your generous donations we were able to pay off all of our medical debt. Yup, you read that right. Every last penny! With what was left over we are taking the boys to a 5 week intensive therapy camp in the Bay Area. For the entire month of July we will living in the bay and the boys will be working their little tushes off. It’s an incredible opportunity that we wouldn’t have been able to give the boys otherwise.

We have a lot of exciting things happening in the next few months. Luke and Jake are turning 3 this weekend which I still can’t get over. I want to stop the clock, slow down time and savor every second.

Next week we are taking the boys to Shriner’s Children’s Hospital in Sacramento. We are going for an evaluation and then the team of doctors and therapists will follow the boys. They will be evaluated by a neurologist, neurosurgeon, occupational, physical, and speech therapist. As a team we will come up with a plan. My guess is the plan will be similar to what we are doing now. I will keep you all posted on what their recommendations are.

Like I mentioned earlier we will attending Boost Camp which is put on by the United Cerebral Palsy of the Bay Area. If you are interested in this just google conductive education (look for a post coming up soon about conductive education).

Then basically as soon as we get back from camp the boys will start school (gulp). I am terrified for this. Since the day the boys came home from the hospital they have been at home with me except for the occasional date night or doctors appointment. Anytime we’ve left the boys it has been with strictly family. So to leave them with a stranger and other kids for four days a week is terrifying to say the least. Because the boys are turning three they have aged out of Nevada Early Intervention which is the agency that provides the boys therapies. So to continue to receive therapy they will be entering into the school district. We have already been through the IEP (individual education plan) and I will be posting on that soon.

So with that I will leave you with what you really want- pictures of the two cutest boys I know.

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Thank you (written by Adam)

This is over due. And like every homework assignment I turned in late in high school, I have no good excuse. I do want to say that it was hard to write, though. To say thank you, first you have to acknowledge that it was real. The outpouring of kindness from family, friends, and even strangers is hard to process, but more than that it’s hard to admit we needed help to begin with. It’s hard to admit that my boys have special needs and that they won’t grow up exactly like everyone else. It’s hard to even type it now.

From the moment that Christine told me a web page had been started to help pay for the boys’ medical bills I have been unable to face it head on- some of it is just stupid pride, some of it is that, those of you who know me, know that I am pretty private, this blog was semi-anonymous for a long time and it clearly is not any longer. That’s ok, it’s just not what I had envisioned when I wrote a post at Christine’s request last year. So, anyway, I guess it’s out there. None of this was ever a secret, by the way, it was just hard to talk about. I guess I owe you all a thank you. So here goes-

Thank you for the friendship, for the kindness, thank you for the prayers, thank you for the thoughts, the hugs, and even just a smile or a laugh that brightened a tough day that we were fighting on the inside and you may not have known it. Thanks for the money, and not to downplay it, because it has already helped, but mostly thank you for proving that we aren’t alone In this. Things don’t always happen like we hope, but to know that we’re not in this alone is worth more than any amount of money. I have no idea how I could ever begin to repay any of you, other than I promise to be a better friend and actually pick up the phone every now and then. I promise to use this gift to ensure my boys have everything they need today and in the future, and I promise to use this truly humbling experience to be more charitable in my own life. The example you have set is not one I can live up to, but I’ll die trying.

Thank you.

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Pay Back

As the days of my own Nicu journey would pass I would often think to my self “what good can come from this” There were days were I truly believed that there was no one else on this planet who knew what I was going through. That somehow my struggles were harder than everyone else’s. And then one day, I woke up and it was two years later and I realized what good came from my family’s heart ache. Compassion and a chance to help others.

Recently I have been blessed with the amazing opportunity to talk to and listen to two other moms of twins who have had their preemies in the NICU. I know what a terribly isolating place the NICU is, and no matter how hard your friends and family try to understand, they just can’t.

There is something so powerful about talking so someone who has been where you are. While no two NICU journeys are the same, the feelings of terror, failure, and isolation are. I was blessed to have a cousin who also had preemie twins to talk to who really understood what I was going through. She was a sounding board and a safe place for me where I didn’t have to be strong. She understood where I was at because she had also been there.

It is my hope that people who in the midst of their NICU journey will continue to be placed in my path and that I can provide them some sort of comfort.

If you are on your own NICU journey I strongly encourage you to make friends with the other parents in the NICU. They know where you are at and they know what you are going through. Two plus years later I still see and keep in contact with my fellow NICU parents.

If you have a friend or family member who has a babe in the NICU. Be supportive, let them know you love them and are thinking about them. Make them dinner and leave it on their porch. While I greatly appreciated the offer of people asking to help it became overwhelming, what was most helpful was friends saying they had cooked dinner and left it on the porch or stuck a gift card under the door.

If you are dealing with your own NICU battle and don’t know anyone who has dealt with this or where to turn. I would love to listen to you and be there for you. Feel free to email me and I will be your support.

And just because they are cute, here is a pic of my guys.

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5 Things I want my Preemie Twins to Know

I recently read a blog post by Meghan Szylvian on the Huffington Post that struck me. The words rang so true that for a split second I felt like I was reading out of an old journal. I hope you all enjoy it as much as did. Be warned, it’s a tear jerker. Get your tissues ready.

Today was supposed to be your due date. Instead, it is your 3-month birthday.

You were born on a Thursday, after just 27 weeks of pregnancy. You spent the first 84 days of your life inside the sterile walls of a NICU, and I spent the first 84 nights of your life without you. I did a lot of praying in that time. Mostly I prayed, even begged, that you would not remember. I prayed that you would forget every injection; every procedure; every tube, lead and wire — and every minute spent alone in a warm plastic box.

As I watched you grow, I began to realize that there are a few things about this nightmare that I don’t want you to forget — a few things about yourself that I want you to know.

1. You are strong.

I have watched you fight for breath. This is not a dramatized way of saying that you went through a lot. What I mean is that I watched you set your beautiful eyes in determined concentration as you coordinated your tiny muscles to push your diaphragm down and draw in air. I saw the relief in your face and your body as the air flooded in, and I saw the exhaustion as you let it out. Then, I saw you do it again, and again, over and over until your body learned its own life-sustaining rhythm.

There may come a time in your life when you feel weak or inadequate. Please remember what you were able to accomplish entirely of your own will and your own fortitude. You are strong.

2. You were ready.

You endured so much in your days in the NICU. One day, I watched you have blood drawn from your heel, then watched a dressing change on the central line that traveled from your wrist to your heart, then watched as your second of five echocardiograms was performed. This all happened in a flurry of a few hours, and the chaos faded from the room as quickly as it came. I was left standing beside you, with my hands extended through the two portholes in your isolette. I placed my hands on your head and belly, I held you as close as I was allowed, and I apologized. I told you how sorry I was that all of this was happening to you, how sorry I was that I didn’t hold onto you longer, how sorry I was that you weren’t still snuggled safely with your brother, protected from the world in the way I was supposed to protect you. Although I thought we were alone, I think your nurse for the day overheard my apology. Later that day, he told me, “In all my years as a NICU nurse, one thing I am sure of is that babies are very good at telling us when they need to come out.” He is right. We have gone through hell together to get to this day, but, my sweet babies, you are perfect. You are strong and healthy and exactly where you are supposed to be. Only God can know what would have happened if I had carried you to term.

There may come a time in your life when you feel like you are not ready for what is being asked of you. You may feel scared, overwhelmed or otherwise ill-prepared. Please know that your instincts about timing have always been correct. You are ready.

3. You are privileged.

You missed an entire trimester of pregnancy. There are a number of reasons that, as I write this today, you are all right. You are all right because you were born in a country with the resources and technology to sustain your fragile bodies. You are all right because we happen to live in a community with access to exceptional healthcare — just 10 minutes from a Level III NICU. You are all right because we had the benefit of comprehensive health insurance coverage. You are all right because a network of professional colleagues stepped in to donate their hard-earned vacation time to me, allowing me to be by your side every day while you healed.

There may come a time in your life when you encounter those who do not share your many advantages in life. Never feel guilty about those advantages, but always feel grateful for them. You are privileged.

4. You are never alone.

I don’t know anything about what it is like to have an identical twin. I never will. What I do know is that whenever I held one of you alone, you were often restless, disregulated, or otherwise showing signs of all that you had been enduring, and that whenever I held both of you together, you settled into a calm heaviness as you drifted into deep sleep. I know that your heart rates slowed until they beat in synchronicity, and you matched each other breath for breath. I have watched as you opened your eyes to study each other with quiet focus. I have watched as you reached out to find each other’s touch. I know that whatever it means to be an identical twin, it means that even as you fight through the most difficult days of your lives, someone fights beside you.

There may come a time in your life when you feel adrift or unsure of where to turn for help. Turn to each other. You are never alone.

5. You are loved.

Because visitation was restricted in the NICU, people had to send their love and support in very creative ways those first months. Your aunt would often leave us dinner or healthy snacks on our doorstep. One grandmother knitted you beautiful sweaters and toys, while the other grandmother mailed greeting cards to our house — timed so that I would get one every few days. A friend I had not spoken with in 10 years bought both of your car seats. Strangers offered prayers for you.

There may come a time in your life when you feel that you are not enough. Please know that you have been wrapped in love from the moment you first drew breath. You were loved before you said anything, before you did anything, before you knew anything, before you were anything.

For the lonely days, for the difficult days, my sweet boys: You are loved.

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Thank You

We are so lucky to have such great friends and family around us. The emotional support and love from everyone while Luke was in hospital was overwhelming. So I have along list of thank yous.

First of all thank you to Dr. Auguste and everyone at Children’s Oakland. The doctors, nurses, and entire staff were, as usual, nothing short of amazing.

A HUGE thank you to Adam’s parents for watching Jake. We literally dropped him at the door and didn’t come back until three days later. Thank you for loving him as your own. Knowing he was well taken care of made focusing on Luke that much easier.

To my prayer warriors (you know who you are) thank you, thank you, thank you. These boys are proof that your prayers are heard.

To my amazing group of girlfriends your kindness never goes unnoticed (even if you still haven’t gotten a thank you note) Thank you for the weeks worth of meals. Not only were they delicious, not having to cook made my life substantially easier.

Thank you to my brother in law and future sister in law who came to the hospital to see Luke but more importantly and picked up my puke covered clothes, washed them, and returned them to me. I, and anyone who had to smell me, really really appreciate it!

To all the family and friends who sent your love from afar, we appreciate each and everyone one of you. We are beyond blessed to have the amazing support system that we have.

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Surgery Day

Morning finally came and I put my puke covered clothes which I had washed in the sink back on. The smell was horrendous and it took all of my willpower not to gag.

Shortly after we woke up the neuro team came by to fill us in. They told us Luke was scheduled for surgery at noon. WHAT? How could he be scheduled for surgery at noon if he hadn’t even had an MRI yet? My heart dropped. I thought this was going to be a quick adjustment then we would head home. The team very kindly and thoroughly described to us what was going on. The catheter that drains the fluid in Luke’s brain had most likely clogged. Luke’s surgeon would be by soon to give us the details.

After Dr. Auguste answered all of our million questions it was about time to bring Luke back to the OR. We walked back to the operating waiting room and spoke with the anesthesiologist which for me is always the scariest part. There is always the risk that once you are put under you will never wake up. It is a terrifying thought that you are handing your baby over and you may never see them again. That being said, Dr. Auguste’s nurse, was amazing. I knew Luke was in good hands with her.

Then came the waiting. To kill time we grabbed lunch at the cafeteria in the hospital and sat and chatted. Where I am weak, Adam is strong. My mind wanders to deep and dark places when it comes to the unknown. Adam knows this and he is my rock. He pulled me right out of that place and kept my mind occupied on other things. He assured me that Luke would be fine, better than fine, he would be great.

And he was. After what seemed like a lifetime Dr. Auguste came to the waiting room and told us surgery went great! He even showed me a picture if the blocked catheter which was pretty cool. (I am posting a picture of the blocked catheter at the bottom after all the text so if you are squeamish don’t scroll all the way down) He let us know that Luke was waking up from anesthesia and we could go see him in a few minutes.

We were overjoyed to go see Lu. Besides looking pretty puffy I think he looked pretty darn good for just having surgery. And in true Luke fashion, the first words out of his mouth were, “Eat, Mama”

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Ok, here comes the catheter picture, last warning to stop reading!

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