Tuesday, March 8, 2011

Why I Walk : Part 2 - Parker's Story

If you haven't read the first part, check it out here: Part 1 - My Story

Let's start off from his birth. Obviously I was sleeping through his birth, I know what I know because of Drew, my doctor, nurses, ect. Parker was born at 9:35 am and from what I know, he came out kicking and screaming! I also know that he was on a vent for 6 hours when he was first born. He was given steroids, caffeine and surfactant; all meds to help with his tiny little body. His first home in the NICU was unit B4. I was so sick, that I didn't get to see him that first day - but Drew did.

A first picture in his new incubator

After 6 hours, Parker was doing good and was taken off the vent and put on to a CPaP Machine. This machine him to breath by helping his lungs to fill completely with oxygen. In the picture below, it is the mask that looks a lot like an elephant nose. Parker stayed on the Cpap for about a month, which isn't abnormal.

With his elephant nose

There is no good way to prepare yourself or others for what you will see upon entering a NICU. Let me try to walk you through it (I don't have pictures of everything - but I will show you what I have!) As you walk through the doors of the NICU hall you will find yourself at the check in. If you are a parent, you will likely have an arm band that matches that of the one on your child. You must sign in and the receptionist must ring you back. If you are a guest, you will need to know who you are visiting and have permission. Upon walking into the unit you will need to wash your hands well. Some NICU's will require a mask, gloves, gowns, ours didn't - at least not for us. In the NICU Parker was in, you could go right or left to the right was Unit A, to the left Unit B, and across the hall unit C (what I affectionately call the almost home unit!). We turned to the left and headed to Parker's spot. B4. It was portioned off by  curtains. Parker spent over a month in an isolette (incubator as some people call it.) Was then moved to an open bed and then finally to a crib!

 - This is one of the best shots of his little "room"

Often we came in to see this. It helped keep it dark so he slept well!

A clear idea of his many cords - heart monitors, cpap, pulse monitor on foot, IV, feeding tube.

The NICU is very quiet - except for the crying babies, and the machine noises. Parker was hooked up to all sorts of machines some of which showed stats on a monitor. Every time the monitor went off, I would automatically look up. It was scary to wonder if it was your baby that was having the complication. (In our NICU, all the monitors are hooked together so if baby in B7 had a problem - it would show up on our screen in a pop up box). I don't know that I ever got used to it. There was also a dry erase board, it would tell me the nurse name, the dr and assistant on at that time and any other important information I needed to know. Parker was in bed B4 for almost a month, then moved to room C for another month and then ended up in room A for the last couple of weeks. 

I wish you could really get a sense of just how little he was - I have little hands...lets just say that.

All in all, Parker did pretty darn well in the NICU! Considering his early birth he had very little complications. His biggest was simply severe acid reflux. He has a couple of scares for other complications, but never required any emergency surgery. Parker spent a total of 69 days in the hospital. He came on Aug. 5, 2008 (a week prior to his due date.) He weighed all of 5lbs and 6 ozs (so tiny in his seat!) He also had to come home with a wedge and on Zantac for his reflux. 

The first year of his life was probably one of the hardest. Because of his little body and lowered immune system, Parker was require to stay in all winter. The most we did was went to the dr. and/or to church. We had to watch VERY closely for RSV - knowing he was more likely than other infants to catch it. He required a monthly shot of Synagis medicine every month from Oct - March. Later in the summer of 2009 Parker began therapy. He was in physical, speech, occupational therapy and in Early Intervention. They followed him as long as needed (occupational was first to go about 2 months after starting, physical was next - 4 months total and speech and EI just dropped us in Dec!). They would come to our house and would assess him and help us learn how to best teach him.

Another big challenge that Parker has faced started in 2009. After a couple of serious wheezing incidents it was determined that Parker has asthma (not uncommon for preemies). Parker now has his own inhaler - he takes a daily med called flovent and then has his rescue med - albuterol.  Also, we learned that Parker was allergic to cats, dogs, egg whites, wheat, soy and peanuts (again, not uncommon). Parker's biggest "issue" today is his chronic eczema. Unlike many people who have it, he requires a strong hydrocortisone cream and we have to lotion the kid up like crazy. Also, we are being followed by an endocrinologist, just to make sure Parker grows well (which he is...)

We are very thankful that Parker has progressed as well as he has! We realize that we are very blessed and fortunate that Parker's complications have been minimal.

A preemie diaper on the left - a size two diaper on the right...Parker was even too small for that preemie diaper at first.

Some Statistics:

 - Parker's weight of 2lbs 3ozs is less than the lightest laptop on the market.
 - Parker's length at birth was 14.5 inches, 30% shorter than the average newborn.
 - Total care for Parker's first months of life was nearly half a million dollars - 66% times the average cost associated with a birth.

One of his many boards! We still talk to Angela to this day!

First bath - in his little plastic container...we use it today for all his trucks :)

Us in room C - there are no real partitions - we got to know our neighbors well!

In his open bed - it was tilted because of his reflux - the little thing on the left is something for him to look at to help him focus (making sure he could see!)

For more photos and for videos check out Parker's site here: Pics & Videos


Sarah B said...

Wow, I can't imagine how difficult that time was for you. We have some friends who had their little man last August at 26 weeks and he was 1lb 15oz. He fought for 7 weeks, but sadly his third infection was too much to overcome. I am so happy for you that Parker is healthy and well today, what a blessing!

tarastitsworth said...

I tear up every time I read anything about your amazing story. You guys have overcome so much, with the help of the Lord. He is so faithful and good. What a miracle Parker is! I can't wait to meet both of you someday!