The day after......

A 24 hour flu bug infested our house. We are SO glad it came and has now exited( hopefully) Yep, people get sick. Yep, its most likely the flu for "those" people but for us we are on the edge of our seats. When do we freak out totally and run him to the ER for CT scans, fluids and possible surgery, OR do we sit and wait and wait and wait and then wake up all fine. Or wake up all NOT fine and the above surgery comes into play.

I realize to some that the stomach bug wouldn't cause this much anxiety. It is just some vomit. But I can honestly say after the 2 shunt revision we last experienced, those little vomits in a shunt baby is what the docs call " impressive and better then projectile vomit" it is so impressive It literally will span my entire bed. Mostly because the force they are puking from is from so much head pressure a person could NEVER understand ( even myself) They are literally trying to relieve the pressure they feel in their brains.

After a vomiting episode Ty will lethargically lay there for a while. Literally, lay there. This is where my next *key* point comes into play for checking shunt function. While he is laying how bad are his eyes moving? How fast? Can he focus on ONE object? Can his eyes hold still long enough to not be worrisome. Tyler has a condition called nystagmus. His eyes always move. Constantly moving. Jerking even. The link has a eye that is like Tylers. His moves a lot fast but the idea is the same. Tyler does have periods where his eyes are VERY still. But a shunt malfunction is not one of them. AND a really bad sickness makes his eyes very bad. But I have seen his eyes both ways and I can tell a difference between head pressure and flu pressure. His eyes were not bad yesterday.

We got him to sleep pretty early for him and he did really well till about midnight when he was restless. I thought more puking would instill but it didn't. At around 3 am he woke up and said he was all done ( signing this at 3 am) and he wanted food and a drink. I got him his drink, and offered crackers. And a laptop did wonders for movies. HOORAY!

He was up from 3-5 snacking on crackers, drinking and watching movies to which I finally switched OFF the computer and put him back to sleep. Which we did sleep. Till around 9:45. It was the longest I have seen him sleep in a WHILE. It was not totally rest full to me because he has to sleep touching me and I really needed to roll over :)

Today we pretty much had our kid back. He was jumping on trampolines, throwing numbers and letters, watching Barney and being bored. And no throwing up.

So YES we are thinking bug.

Yes we can over react but I think it is understandable. We have learned to go through our "chain" of commands.

Ty is sick what do WE do:

Call Dr. Marisa, see what they suggest. After asking and answering a few questions from them they will tell me what they "think." Yesterdays was Nancy, if you think that he is broken you will know in a few hours ( its to early to tell either way) take him to PCMC. Call me. We will get things goings if needed. Thanks for not freaking out!( though I think we freak her out sometimes)

Lay there with him. Hug him and love on him. If it is a sickness dang that stinks. If it is a shunt he needs to know that we LOVE him soo much and that we will fix it and as he gets sicker and more pressing to get to the ER, we need to be close to monitor for seizures and those pesky heart rate drops.

And last but not least:

Get a blessing. At the end of the day that was what put him to sleep. A simple and powerful blessing from his dad. Ty had his eyes closed the whole time and opened them simply to say amen.

We love him and hope to make it to Feb. where we reach our one year with a shunt. We can do it. But above all we move on and keep going. Monday we go back to our routine.. a little skinnier and a little more weak but full force forward.

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!