Evan Almighty

I don’t know if I am fully prepared for the next stage that I am about to enter into with Evan. I think it is referred to as the “terrible twos.” He just turned 17 months (15 months adjusted) and it’s starting. The little tantrums he throws when he can’t stack 2 blocks, or when he gets disciplined or when something doesn’t go his way. Oh, it’s starting.

Today was a rough day. We hang out mostly downstairs in the family room. It’s a large room, so I have the area where the boys play kind of barricaded. Outside of the barricade is the dog’s cage, the computer desk and of course the stairs. All of these areas Evan wanted to be a part of – big surprise. For over an hour this morning he kept breaking out of the barricade which became beyond frustrating to me. Not only was I not able to spend any time with Alex, but I was sweating like crazy and was ready to call it a day at 9:00 am. (I am able to laugh at the sweating part now as I read it back) I yelled at him a lot and I felt really bad. Not that this is the first time I have had to discipline Evan, it just seemed like a lot all at once. I was finally able to keep him in the play area and give Alex some attention but it didn’t stop Evan from crying about nothing.

It’s these moments that wear me down as a mother of twins. It’s these moments when I realize how much work it is and days like today that make me feel like a failure. But I can’t give up and I won’t give up. I take a few moments to myself, get it together and continue on with my day because that is my job as a Mother and I can’t quit.

The afternoon was much better for all of us. We all went to Alex’s therapy appointment which went really well and then came home and played. I apologized to Evan for yelling at him even though I know he doesn’t fully understand. I made sure to give him lots of hugs and kisses. Then, this evening while I was sitting on the floor with Alex, Evan came up to me, put his arms around my neck and gave me a super wet kiss on the cheek and then one on the lips. It’s more like he just opens his mouth and slobbers spit on me, but I will take it. It made all of my feelings of being a failure disappear because somewhere along the way I have taught my boys love and that’s something that can't be beat.

Milestones

Milestones are a big deal, especially when an infant is growing and developing. As a parent you get excited when something huge happens and you feel like the proudest parent in the world. I remember the first time Evan rolled over; we were at my Aunt’s house and it just happened out of nowhere. Only myself, my Grandma and my Aunt Susie saw it and you would have thought someone won the lottery we were so excited! From there he crawled, pulled himself into the sitting position, then standing and eventually walking. Right now he has his own little language going on but last week clear as could be he said “Mama” for the first time. I still have a smile on my face.

Alex hasn’t had the milestones Evan has had but that is to be expected. There was a time when I would get really sad about this as he would lie on his back on the floor while Evan roamed the room. But then I think about the things he HAS done and I couldn’t be more proud. Recently he has reached for the spoon or fork while we are feeding him because he wants to do it himself. So I let him do it every time he reaches! Today, he was holding his sippy cup with his left hand – which is also his dominant hand -  and out of nowhere he grabbed on with his right hand and held it with both hands for a couple of seconds. He's never done that before and I think my excitement may have startled him, that’s why he let go! My favorite moment this week was at therapy on Monday. He has been using the gait trainer towards the end of his session (for those of you who aren’t familiar with a gait trainer, it’s a fancy walker for kids his age) and he does a great job of holding himself up and standing on his own. His Therapist Kate has been assisting him in moving his legs while he is in it, but he decided that he was going to pick up his left leg and do it all by himself before she could get to him. I freaked out – in a good way of course; I just couldn’t believe my eyes. Then she just had to touch his right leg to get him to move it on his own. My excitement made him super happy and he was smiling and moving his legs. It took everything in me not to cry.

It’s these small moments that keep me going. It takes some of the sadness away and gives me hope for his future. It’s also not fair to Evan for me to be sad because he is doing things Alex can’t. His milestones and accomplishments need to be celebrated just as much as Alex’s. They are both so strong and determined at 17 months old – each in their own way – how can I not be proud?

I love when they make each other laugh. Evan cracks up whenever Alex sneezes and Alex cracks up whenever Evan crawls around really fast in front of him. They give each other hugs and kisses and when one gets in trouble, the other gets upset too. I love having twins and even though things are a little harder for Alex, I know things could be much worse. His Cerebral Palsy isn’t gonna go away, so we can either let it control our lives or we can control it by making the most out of what he CAN do and focus on teaching him new things every day. I refuse to let him down.

Reflecting

Many people praised me on my initial post for being so positive. Let me just say that it’s taken me a long time to get where I am today. It’s been a rollercoaster of emotions from the day I found out I was pregnant. I think if anything, parenthood and parenting a special needs child have given me more perspective of what life is all about and they have made me who I am today.

Before I was pregnant, I didn’t have anyone to worry about but myself. No one depended on me and I was a very selfish person. That was one of my main concerns with starting a family. I knew that once I had kids, I wouldn’t be able to do whatever I wanted when I wanted. I was very accustomed to that lifestyle. Eric and I had been together for 9 years and for 9 years we came and went as we pleased. No restrictions. People had been asking us well before we even got married when we were going to have kids. To be honest, kids kind of annoyed me and that scared me to death because I didn’t think I had it in me to be a Mom.  

Everyone kept telling me that it is different when they are your own kids. Blah Blah Blah is what I would think in my head. But I’ll be damned, they were right. So right that I am telling people I know without kids the same thing now. It is TOTALLY different. Never in my life did I think I could love 2 little people as much as I love Alex and Evan. My selfish lifestyle went right out the door and my world now revolves around them.

There are so many times when Eric and I reflect on where we have been with Alex and Evan. I think parents of premature babies and more importantly, parents who have spent a substantial amount of time in the NICU tend to do this. I knew that carrying twins had its risks, including preterm labor. I figured I would easily make it to 36 weeks since my pregnancy was going so smoothly. I never imagined I would deliver in an emergency C-section, have 3 ½ pound babies, leave the hospital after 4 days without them and travel back and forth every day for 48 days. But I did and that’s how it was supposed to be. Why? Well I don’t have the answer to that, but I can tell you that it has made me a better and stronger  Mother.

Going back and forth to the NICU was tiring both physically and emotionally as a parent of two newborns. I wanted more than anything for my boys to be at home in their own cribs, not hooked up to any monitors and available for me to cuddle with them anytime I wanted. But I also wanted them to be healthy and well and that’s what the time in the NICU was for.  We learned a lot while we were there and when it was finally time to bring them home, I felt more than ready; more so than I would have been if I had brought them home after 4 days. Bringing a baby home can be overwhelming but bringing twins’ home is downright terrifying. So I am thankful for our time spent in the NICU, I just wish it didn’t have to be so long.

Tonight as we were feeding the boys’ dinner, we were reflecting back to when they couldn’t even eat from a bottle and had to be fed through a feeding tube. Those days seem so long ago as they are eating what we refer to as “human food”, drinking from their sippy cups and are no longer taking a bottle.

Then it hits me, I don’t have babies anymore. I have two toddlers!

Thank you

Just a quick Thank you to everyone who has taken the time to read "Our Story". We received a lot of wonderful comments to our facebook pages, personal emails and phone calls. It means so much to us.

In my spare time (hahaha) I am trying to work on the Blog Page so it is more user friendly so bear with me. For now I think it is functional and that's all I need.

I hope you will check back in the future and continue to follow along in our journey. Please feel free to post comments on the blog and you can email Eric or myself if you have any questions.

Our Story

In the past two months, I have read some incredible blogs from families who have children with Cerebral Palsy and by creating this blog, I am hoping to connect with more people along the way and keep our family and friends informed with what is going on in our lives. So here’s our story.

The Beginning:

About a week or so into 2010 I found out I was pregnant with our first child. At our first doctor’s appointment the ultrasound machine wasn’t working so we were really bummed, but we got to hear the heartbeat which made up for our disappointment. Two weeks later we went back in and found out that there was not only one baby, but two. TWINS!?! We were a little shocked to say the least.

I went from planning and expecting one baby with a normal run of the mill pregnancy to planning and expecting two babies and becoming a high risk pregnancy. Once the shock wore off, I was in full planning mode.

Everything was going as planned and the babies and I were doing really well. I got laid off from my job on the last day of June and was excited to have the next two months to get things in order and “nest”. July was here and the heat and humidity were in full force. I stayed inside most of the time because I didn’t need my ankles and face swelling anymore than they already were!

On July 14, 2010 I went in for my ultrasound and scheduled my c-section for September 1^st which would put me at 38 weeks if I made it that far. The babies looked great and were approximately 3 lb 10 oz each and everything was right on track. Only 7 more weeks to go!

The Twins are here....a little earlier than expected:

Two days later on July 16, 2010 I got the shock of my life when my water broke out of nowhere while sitting at the dining room table. My Husband had just pulled in the driveway from a long day at work. The Doctor thought maybe one of the babies had “karate chopped” my bladder. I was no dummy, I had read the books and there was no doubt in my mind that my water had just broken.

I went into labor in the car and once at the hospital they determined I was already dilated four centimeters and there was no turning back. Two hours from the time my water broke at home, I was a new Mommy to Fraternal Twin Boys who we would later name Alex Ryan and Evan Michael.

From surgery, both boys were whisked off to the NICU to be monitored. Both needed oxygen assistance for the first few days, along with feeding tubes and medicine. It was a very trying time for my husband and I.

The weeks following were daunting and exhausting. There would be a string of good days, and then one of the boys would have a setback. Alex seemed to be coming along better than Evan. He came off Oxygen first, had his feeding tube removed first and was scheduled to come home on August 11^th, but one of the nurses claimed he had a “setback” while eating the night before he was to come home. Talk about bursting your bubble. Evan had a hole in his heart that luckily closed with medicine; he suffered from apnea, had feeding issues (due to the apnea) and even got an e-coli infection.

The day we will never forget:

Two days later on Friday August 13, 2010 the boys had their 4 week head ultrasounds. (They each had one at a week old and everything was fine.) That evening, my husband Eric and I were pulled into a private room with one of the neonatologists and informed that Evan’s ultrasound was normal, but there were some “findings” on Alex’s. My heart sank. What the hell did that mean? That’s when we were informed that there were areas of Alex’s brain that were deprived of oxygen at some point either during pregnancy, during delivery or after. They couldn’t tell us when and said we may never know. The condition is referred to as PVL (Periventricular Leukomalacia). These areas of the brain are considered “dead” and couldn’t be restored. He would more than likely develop Cerebral Palsy on down the road and that’s when it all became a waiting game for us. We asked a ton of questions and got a range of answers. His disability could be as little as having to wear a pair of glasses to never being able to walk. How’s that for an answer? I composed myself, walked out of the room and back into the NICU, scooped Alex up and held him close to me and never wanted to let go.

I cried for what seemed like days. I blamed myself for it because I was the one who carried him and was supposed to do everything in my power to protect him. No matter what I did, I couldn’t look on the bright side. Why did this have to happen? Why Alex? My husband is the one who made me snap out of my funk and realize that no matter what happens he is our son and we are going to love him and raise him along side Evan just as we had planned before they were born. It’s just that Alex’s journey will be a little different. And you know what, that’s ok. I say that now, but it took me a long time to admit that. I also know now why Alex is different. It’s to make me a better person.

The following Monday I got a call from the NICU that there was something wrong with Evan and they were running a bunch of tests. He was irritable and wasn’t eating. The cause: he contracted an e-coli infection. How in the world does a baby contract that in a HOSPITAL? It would be a minimum of 2 more weeks for Evan because he was on an antibiotic and they wouldn’t let him leave until it was finished. I was upset and grateful at the same time because if that had gone undetected, he could have died.

Alex and Evan come home!

On August 24, 2010 Alex was released from the hospital after 39 days. Eric and I were so excited, but sad at the same time to leave Evan. That was really hard. I traveled back and forth with Alex for 9 days until September 2, 2010 when Evan finally got to come home after 48 days. My family was finally home together for the first time. I will never forget that feeling.

The next 9 months:

On November 1, 2010, Alex went in for an MRI which gave us a better idea of how much of his brain was affected. It would be the area that controls his Motor Skills. He has tightness in his muscles through his legs, arms and back and his core is very weak making it hard for him to sit.

Evan began rolling over and sitting up at 6 months of age (4 months adjusted). It was a lot harder for Alex to sit and he wasn’t rolling at all. That’s when we decided to have them both evaluated to see where the delays were and what the next step would be.

It was clear that Alex was delayed quite a bit as Evan continued to progress over the next few months. Evan would start to crawl and even stand on his own. We started Alex off in the Early On program through our school district, which is a state funded program and then moved onto an outpatient therapy program through a local hospital.

Alex and Evan turned 1 year old on July 16, 2011 and celebrated with a big outdoor party with family and friends. It was a wonderful milestone to celebrate. They have both come so far.

Alex and Evan Today:

The boys are now 16 months old and Evan just started walking independently a few weeks ago and has really taken off. He loves to get his hands on anything and everything he can. He has a lot of energy and a funny and outgoing personality. He is going to be great motivation for Alex as they get older and I think he will be his protector.

Alex has since been diagnosed with Cerebral Palsy. He can roll over and he sits pretty well in the tripod position (He still needs someone as a stand-by in case he topples over). He is in therapy 6 hours a week for now but that will probably decrease after the New Year based on what insurance will or will not cover. The tone in his legs has decreased as he has gotten older which gives us hope that he may be able to walk someday with our without a walker. He uses his left arm and hand very well and is working through therapy on using his right arm and hand more.

There is still a lot ahead for Alex some of which is still unknown, but we just take things one day at a time and try not to get discouraged. We are so proud of how far he has come in the 6 months he’s been in therapy. It’s hard not to compare him to Evan because they are twins, but we have realized they are two different little boys with very different journeys that share an incredible bond.

Going through this whole process of finding out we were having twins, to giving birth 7 weeks early and then being told that worse case your child may never walk really puts things into perspective and makes you realize that your whole life can change in a split second.

Alex and Evan are two of the greatest blessings we could ever ask for in life. We are living a life that I never thought we would live and although some days are harder than others, we thank God everyday for what he has given us.

I hope you will continue to follow us on our journey, because this is only the beginning.