The man at the Grocery store

I always thought I would know what to say. Always wondered if I would be witty, smart mouthed or even offended. I even wondered if anyone would say anything.

Of course that was when he was tiny. When he looked just like any other little baby. ( minus a few battle wounds on his head and oxygen) But he looked just like any other kiddo.

After Shunt surgery we often had looks or stares, especially when we had bad hair cuts done by neurosurgeons but really not many people come right out and say something or ask. Usually it is a point and a whisper or a loud look at that.

Sometimes in the store you have a nice old lady who tries to get Tyler to talk to her and he usually just waves and no words. A quick explanation that he doesn't talk but his name is Tyler usually suffices.

But not yesterday.

While we were waiting in line ( at the SLOWEST lady in walmart) A man started talking to Tyler. Ty was unusually friendly and started kinda babbling to him. His babbling isn't really "words" or even sounds of words but one sound. The man was very nice and kept trying to engage Tyler. Then came the big question.

What is wrong with him?

It was innocently asked. And I surprised myself. I wasn't even remotely upset or offended. In fact it was refreshing.

His question started about his eyes ( like I said we were really in the slowest line at Walmart) He asked if Ty's eye was a lazy eye. My explanation: " No he is almost legally blind so his eye moves to compensate for some of his eye sight being damaged." He asked how it happened. My answer again was simple.. He was born way to early. His questions persisted. I explained Tyler was born just under 2 pounds. The man looked at me and said,

" Wow, I have never met a mom raising a miracle."

He turned around and told another lady behind him that Ty was one pound when he was born. He was so proud to share that MY kid was a miracle.

A few blog posts that I have seen recently has had some really mean things regarding feelings of raising a special kiddo like Tyler. YES, my child has many disabilities. Yes, as we get older he "looks" like he has many disabilities. Some days I am fine with it, other days I could do without our *issues.* But just like a stranger, my son is a miracle.

Every single milestone makes me smile. Every single missed milestone made me cry. He is a wonderful kid and is doing so much. I am thankful for the things he is doing and hope to see him grow and learn and advance. Will things still make me cry? yep! Will I still wish for talking and long drawn out sentences? Yep! I won't ever stop hoping for that day when he does all those things that I dreamed he would do.

After 4 years and million tears and a long walk in the world of Holland I can say that the trip has its beauties!

Did you know that I am lucky enough to be raising a miracle?

Ask the guy at the grocery store!

YOUR Team- In the NICU and beyond!

For many preemies a stay in the NICU is inevitable. The NICU is such a different place. I recommend to any pregnant women to sign up and take a tour of the NICU. If you find yourself there it is a VERY scary and overwhelming.

I had never been in a NICU. I don't know how I survived it. The only thing that kept me going was knowing on the other side of those locked doors was a little guy that I wanted to touch and love and hold.

The NICU is such an emotional roller coaster. Some days are UP UP and others are DOWN DOWN. Sometimes it wasn't even days. Sometimes it was hour and even minutes that the emotions change.

The NICU is different for everyone. Depending on the complications that your baby experiences and how long you are there is a big indicator of the roller coaster you experience. For us our roller coaster hasn't stopped but we were able to move onto a different ride when we left the NICU.

You have a HUGE team of doctors that you have to really feel that you can trust. When we first got to the NICU I didn't know if I could trust the set of docs we had. We quickly found ourselves some nurses that were our Primary nurses. Barb, Gerald and Brandon were our "team" of nurses. We chose them to be our primary nurses. They were SOOO good with Tyler. Tyler did so well with the boys. Brandon would read baseball magazines to him. I trusted my child with these people. I knew Barb would tell me if things were not looking good and Gerald became the Charge nurse and he really pushed for us to be able to hold Tyler.

As Tyler got sicker and the need for him to be moved AGAIN Gerald really got the ball going and he prepared us to get our kid to the next level. He also made it possible 3 weeks after Ty was born to hold him. BOTH of us. It was amazing and sad experience. In my mind, bonding with my child was suppose to happen instantly. Instead that skin to skin contact was with held.

When we moved to PCMC I was sick. I was so sick because we had a new team of doctors. We were put on team A or team B and the would pick where he is according to how sick he was. We knew we needed brain surgery so we knew it would be a long haul and we would need to trust our team.

This is when we met Marissa. Marissa is still Tyler's doctor. There is NOTHING that I can say that will give this doctor the praise she deserves. I became even closer with Marissa the first time she called at 4 am to tell me that something was really wrong.

After that morning call I relied ( and still do) rely on this doctor. She has NEVER been dishonest with me. She has always told me the truth. She has ALWAYS listened to me and has never pushed me away.

Her phone call to me was to let me know that after Ty had his brain surgery he had a seizure. It was a bad one. She said it was a few minutes long and she had to give him the max meds for him to be under control. She stayed on the phone with me while I sobbed and sobbed. I got up and pumped and headed up to the NICU as soon as I could. Marissa was called while we were there and she talked with us over our extremely snowed baby.

She was my solid solid arm in the NICU and after the NICU. Between her and Dr. Duffy and Nurse Jen I survived my motherhood so far.

Our team of docs while in the NICU were all VERY smart and very busy. But they made OUR team. Tyler still has many of these doctors today.

In the NICU you also have to find people you trust to be your nurses. One day while we were just getting the swing of how PCMC is working etc we met a nurse. A nurse that I really liked. And that I thought I knew from some where. Sure enough, we were neighbors in college. We asked her to be our primary nurse, we had Chris at night and Jennica and then who ever. We were there enough we knew pretty much everyone.

Our team of docs were there to work as a team and the end result was to get the best Tyler that we could, send him home and love him and his team at home would continue to love and help him grow.

Our Main team of docs now are the team that I trust. Its the team of Doctors that have transitioned us from the NICU to now

Dr. Walker- the very BEST neurosurgeon in the valley ( in my opinion) This man has listened to my mommy gut more than once and has gone above and beyond and has cut a vacation short to talk to a mom whith a hunch. He called when that shunt he put in was recalled. This man is my hero!

Dr. Nagle- Marrissa is seriously my HERO. I can call her and she can hear the panic in my voice and she can defuse the momminess in me and get me to listen LOGICALLY. Marissa is one of the only people who have gotten me through four years of preemiehood. Even though I moved I called Marissa a few times. She is willing to try ANYTHING for Tyler. She is the best thing that I could give to my son. A doctor who loves him and adores him.

Dr. Larsen- Originally this doc was Dr. Dries. But I really needed a doc that would work with my child not tell me he was blind. He isn't blind. Dr. Larsen did that. He was listening. He got us started on the path we are on now.

Dr. Gooch- She is Tyler's rehab doc and she is working at getting us a little more mobile and getting us back to where we need to be. We are very thankful for her.

Dr. Carrol- She is working with Dr. Gooch to help with the orthopedic problems that Tyler is having. She is doing all she can to avoid surgery and fix him up the best we can.

We will be seeing a neurologist here and also a sleep doctor. That makes up Tyler's whole team of docs. We have therapists that are included in our plan of action. But the most important part of the whole team is Tyler

All of these docs have one thing in common from the NICU to now. TYLER.

As a new mom embarking on this journey, take recommendations from your friends but know that in the end YOU chose what is best for your baby.

Find the best team that works for you!