Life Flight

In my first post, I gave a short account of what we went through when Xyler was born and about the CHD he has.  I could have written a novel in that post if I wrote about everything.  I didn't want to give people too much to read in that first post, but I have decided to write about what we went through in segments.  It's amazing how, even though it has been 4 months, those thoughts and feelings are still so close to the surface, and will come out from time to time from something that will spark my memory of what happened.

Our pediatrician's office is right by the hospital.  When I leave from his office I always drive on the road that goes by the ER and through the parking lot.  It also passes the landing pad for life flight.  After Xyler's checkup on Friday I tookmy usual exit route to go home, of course this brought me past the landing pad and all of the emotions came back to me. 

I would always drive by there before and look at that pad and think how hard it must be for people when they have to be life flighted, or have a child or loved one that needed to be.  I never could have imagined that I would one day have a child be life flighted, especially my newborn baby.

As we sat in the NICU at Logan Regional Hospital, waiting for the life flight team to get there, I kept thinking about how on earth I was going to handle having my baby be taken away from me and fly in a helicopter.  I wouldn't be able to see him for a couple of hours once they took off and I wouldn't know if they made it there ok until we got there.  I just sat in a chair holding Xyler and just cried.  It just felt like too much for me to handle!  I had just had a baby, which makes you emotional already, then to have something wrong with my baby made it so hard to process everything.  To find out something was wrong with his heart and not fully understand what, was so scary!  At this point we had no idea if he was going to live or not, so to not be able to be with him was unbearable!

My eyes were red and sore from crying so much, in just a short time.  The kleenexes they have at hospitals are not soft, by any means.  They had rubbed my eyes raw from wiping the tears away, but I didn't care, I just kept crying.  I was trying to hold them back a bit so that I wouldn't just be hysterically(I hope that's a word) crying.  I thought I did ok and yet I still apologized just for crying.  I now look back and think "Why apologize?"  Crying showed just how much I cared for my baby and how scared I was, which is ok.  He may have only been born a few hours before but my heart was already filled with so much love for him.  The nurses in the NICU were so kind to us and they made sure I had a box of kleenexes right by me.  I want to say thank you to them for being so great!  They even took pictures and made us two scrapbook pages.

When the life flight team came, I was sad to have to hand Xyler over to them.  I didn't know when I would be able to hold him again.  They took him from my arms and laid him down so that they could get him ready to be transported down to Primary Children's.  They had to start giving him a medicine through his IV before they could take him, and for the life of me I cannot remember the name of this medicine.  This medicine is for keeping a valve on your heart open that closes after you are born.  This was how he was getting blood to his lungs so it was very important that it stayed open. 

Once they had everything ready they picked Xyler up and put him in the bed/case(don't know the right word for it).  When they did, his IV that was in his hand came out.  He had to have two working IV's before they could transport him so they had to put an IV in.  It was horrible!  They poked him so many times, and tried in several different places to put in a new IV and it just wasn't working!  I couldn't imagine trying to put an IV in on such little veins so I know it was difficult, but it was so hard to watch.  It took them about 20 min. before they finally succeeded in getting and IV in.  I'm just glad the one in his head was fine.  I need to thank the life flight team also, for taking such good care of my baby.  They were great at explaining to us what they were doing.  They also made sure we got to kiss Xyler goodbye.

Off they went with our baby, to wheel him out to the helicopter.  Scott pushed me in a wheelchair as a nurse walked us out with them.  This was around 4:00 AM.  On our way out I saw my OBG doctor.  He gave me a hug and told us how sorry he was.  I must say, I think he is just one of the greatest doctors out there!  He truly cares for his patients and their families.  After we talked to him we hurried and caught up with Xyler and went outside.  It was cold and lightly sprinkling but I didn't care.  Everyone kept piling blankets on me on our way out and I kept telling them I was fine.  I couldn't feel the cold.  All I could feel was my heart aching for my baby as I watched him fly off into the sky, not knowing what his future held.

Now when I drive by that landing pad at the hospital I have different thoughts.  Now I do know what it is like to have a child need to be life flighted.  I do know just how scary it is, but I also know how it is a blessing that we have it, and you will handle anything to help your child.  It is also a blessing that we have such wonderful trained professionals who make up the life flight team.  I do cry when I see it since all of those emotions come rushing back to me from that early morning.  I wonder how long it will be before I can go past there without having those emotions come back to me as strong as they are.  I know they will never fully go away, but with time they will fade a bit. 

This is a pic of Xyler when I was able to hold him before the life flight team came.  He was so calm through all of it.  He was only a few hours old but we could already see that he was a strong boy.

4 Months Old Today

Xyler is 4 months old today.  It's amazing how fast time can seem to go by and yet seem slow at the same time.  I guess I am not one of those moms who want their baby to stay a baby when it is their last baby.  We don't plan on having anymore kids but I'm not wanting Xyler to stay a little baby.  I want him to get older and chub up so that hopefully it will help him to recover from his next surgery.  After his next surgery then time can slow down.

 I can't wait to have him not need oxygen anymore!  That will be a great day to be able to pick him up and carry him all over the house without worrying about how far the oxygen tubing goes.  I think I will just pick him up and do laps around the house on that day, just to make up for not being able to now.   :)  This will happen after his next surgery too.   

So, today Xyler went in for his 4 month check up and had to get 2 shots....poor kid.  He has been poked by a needle so many times in his short little life, I didn't blame him for crying so hard this time.  He weighed in at 13lbs 5oz (20%) and is 25 1/4 inches long (70%).  His head measured in the 8%.....so little.  The doctor was happy with growth and said he is doing well.  Those are good words to hear.  Now, if only he would get over his cold!  We have had him sleep in his car seat throughout this cold and I can't wait to be able to have him sleep in his crib again.

Now that he is 4 months old the doctor said I can start him on rice cereal.   So I will start the cereal in a couple of days and hopefully it will go well.  I love it when they take right to it and are not super messy.  :)  I guess I will find out soon.

Xyler

On October 24, 2011 our 4th child, Xyler, was born.  We held him in our arms and made plans for when his siblings would come see him and when we would take him home.  He seemed so perfect and precious.  A few hours later our life was forever changed.  Little Xyler had a heart defect.

Everything, after hearing that something was wrong with his heart just seems like a big blurr. He was life flighted to Primary Children's Medical Center 7 hours after he was born. My husband and I gathered my stuff and left to go down to be with our new baby. It's hard to describe just how horrific that ride was. It is about a 90 minute drive to get to Primary Children's from where we live, but it felt like forever.

We later found out that Xyler has Tetralogy of Fallot. http://en.wikipedia.org/wiki/Tetralogy_of_Fallot I felt like I was dreaming and I just wanted to wake up! The thought of my son having to have heart surgeries the rest of his life was so hard for me. Don't get me wrong, I am so grateful for our technology and these wonderful doctors who work miracles and that they could save my sons life, but it's hard to think of your child having to go through it again, and again, and again.

Xyler had his first surgery when he was 3 days old. It was so hard to just sit and wait during it. It took about 5 hours for everything. This surgery they put in a BT Shunt and put a patch in his pulmonary arteries to widen them where they were narrow. They do the shunt so that his heart and him can get bigger before they fix the problems in his heart. We are guessing he will have his second surgery in a couple of months.

Xyler was truly amazing after his surgery! He was so strong and did so well that we were able to take him home 6 days after his surgery. He had a feeding tube and was on oxygen when we brought him home. I was able to take the feeding tube out a week later. He is still on oxygen and we figure he will be until after his next surgery, but I figure that is better than other problems he could have.

I keep him at home and away from people except for when he goes to his doctor's appointments, which was a lot at first but has slowed down now. We don't want him to catch anything and so we take these precautions. He has had 3 synagis shots (for rsv) and will have another one next week. He has had a little cold for a couple of weeks that I hope will go away soon! It is always hard and scary when your baby gets sick but I feel like it is 10 times more stressful when your baby has something wrong with them.

I go a little crazy sometimes from being home all the time and from all the stress.  I'm hoping blogging is just the outlet I need.  :)  I have 3 other kids who help keep me busy. They are Xander who is 8 almost 9, Nika who is 7, and Xavian who is 18 months. They have done really well with everything that has happened since Xyler was born. It was a bit hard for my 18 month old when we were at the hospital with Xyler, but it's amazing how fast kids adapt. They love their baby brother and always pray for him to get better.  I am truly amazed and proud of their strength and love.

We feel so blessed to have Xyler in our family. We have had many blessings happen to us since he was born. He is such a happy, strong baby who is growing so fast. If it wasn't for his oxygen and scar you would never know that he has gone through as much as he has.  He has taught us so much about life and love and miracles.