Saturday, December 3, 2011

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 1st 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 11th, 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.


  1. Oh Keri, what a rough start. I can only imagine the emotions you experienced during that time. Your strength is amazing!

  2. I am so excited to have found your blog. Our Gatlyn was just diagnosed around Thanksgiving with Diplegic CP. We are also from Michigan. I too have a blog that I blog about his journey. Can't wait to read more! I am only just starting!