FINALLY ! after about 17 days of being readmitted into the hospital Shawn will be coming home sometime this next week!!!!

Shawn will be going for his GLEN surgery in October, As his cardio wants him to get his surgery before the cold and flu season !

I am a little bit nervous for the surgery, I don't really know what to expect I guess all I can do is pray that it is in God's will that Shawn makes it threw all of his surgeries!



Jesus I Trust In You

Welcome to Holland.

 

 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Why???

Well.. Today during rounds the team of Drs. that come in and decided the changes going to be made for Shawn. They mentioned that Shawn's liver has dropped again ( sign of heart failure). his work of breathing is continuing , and he is not gaining weight... I asked the Cardio who was in the room how the Echo that he had yesterday went.. She hesitated and I could tell she was looking for the right words to say to me. She told me that the squeeze isn't as strong as it once was and that there is leakage of some sort happening.... and during rounds they did mention heart failure but never told me straight up that this was the case. I  feel as the Drs. are leaving out some information and not telling me anything just yet? Why I keep asking myself, why wont they just tell me what is actually happening to my son. WHY?WHY?WHY?...  I am currently waiting to meet with the social worker and I hope she will be able to help me find out the questions I still have. If Shawn is in the stages of HF, why can't they just tell me that? Is it cause they are not 100 percent sure? 


I guess all we can do right now is pray for baby Shawn. Like I always have  I will contiune to do so.


The reason why I started this blog is so that people can hear Shawn's journey. People often dont realize this but KIDS DO HAVE HAERT PROBLEMS TOO!. I know I never thought that a baby could be born with a heart problem I just thought that was somnething that happened in older people. This has really opened my eyes to the "REAL" World. please share my blog with people. I want poeple to me more aware of this "REAL" World...

JESUS I TRUST IN YOU .

Today has been a really overwhelming day for me. My son Shawn Andrew Joseph Katrick was sweating a lot more then normal, Increased work of breathing, His oxygen levels were low, And he was not tolerating his feeds to well.. I took Shawn to the Alberta Children's Hospital Emg. Lucky of us the wait time wasn't that long, As Shawn is a Hypoplastic Left Heart baby. For those of you  who don't know what HLHS is. Its a serious and rare heart condition.Its where the left side of the heart doesn't develop. I was told that only about 100 babies in Canada per year are born with HLHS.

Anyway I'll get into that later on what's been happening with him thus far. Let me tell you about  my journey that I have had so far.

Well for starters I'm only 20 years old( as of July 18/2013)
Anyway my story starts back to when I was about 16-18 weeks pregnant. Shawn's Dad (Brad) I were having our ultrasound done to see what gender our baby was.  We both wanted to have a boy. The Ultrasound Tech, told us that he thinks Shawn was going to be a Shauna. but we had this later confirmed that Shawn was indeed a Shawn. I asked the Ultrasound Tech, If everything looked good, He didn't give me a straight answer and was trying to avoid the question. He told me he was sending the results to a doctor to see if everything was "Alright", And that we would be contacted if there was anything wrong with our baby. A couple of days went by and I received a phone call from a lady who worked at the Foothills Hospital in Calgary and she told me that I had an Eco booked for this coming up Wednesday. I didn't really think much of it at the time, I just assumed that I was going to be getting my ultrasounds done there now. Wednesday came around and I had the Eco done. I was alone Brad had to work and my Mom could not come with me as my three siblings were 4,2,and 1 years old at the time. All I could think of during the ultrasound was how excited I was to see my baby in my tummy and how I couldn't wait for his due date which was May 22 2013. The ultrasound took about an hour to complete. They told me to go wait in the room and a Doctor was going to look over the ultrasound and tell me how it turned out. I waited in that room which seemed to be one of the longest waits of my life. Finally I heard a knock at the door and a Doctor came in, I don't remember her name. She gave me a box of Kleenex before she told me what was going on, I knew right then and there that something was wrong with my baby. She then told me that Shawn was diagnosed with HLHS. She told me a had x amount of weeks to abort the baby . I couldn't stop crying maybe for the fact that my son had HLHS, or maybe it was for the fact that she told me I would be able to abort my baby. Why would I abort my baby?  It's not his fault he has a heart problem. I left the room when  I semi collected my self. Went downstairs and went into the bathroom locked my self in there for a good 45 mins crying and praying to God that my baby was going to make it and that God would give me the strength I needed to do this. I called my Mom and told her all about the Eco and what the Doctor told me. I'll never forget what my Mom told me that day. She told me " God has a plan for your baby, It may not be the plan that you wanted, and that God wouldn't have giving you this baby with this heart problem if he knew you couldn't handle it, You have to trust in our Lord he knows what he is doing, it may hurt now, but everything was okay.  Keep in mind here I'M a 19 year old who was focused to grow up due to being pregnant. but now I had to grow up even more.
I called Brad and told him that Shawn has this heart problem, we met up and I told him that there is no grantee that Shawn will live until he was in his thirties, and I told him that the Doctor told me I could get an abortion  Brad told me that I should get the abortion since Shawn really had no chance in making it( I think this was just he's way out ) things weren't good between us, I was dealing with Brad and his drug use and drinking, he would leave in the middle of the night and not come back until the early morning. I know I know. You all are probably thinking why didn't you leave this DUD right then and Brad has cheated on me too ( Half of our relationship on this dating site dirty messaging girls) Why did I stay with him as long as I did? Maybe it was the fact that I was scared of losing my son to HLHS. And that I didn't want to be alone going threw this. Anyway a couple months went by and Brad and I were doing well. He stopped with the drugs and the drinking. and we were actually good. Brad and I ended up getting an apartment together. now with my due date coming up I was sent to Edmonton to delivery baby Shawn at the Royal Alec Hospital. Like most babies they have a mind of their own, Shawn decided to come early. May 1 @ 343 Am Shawn was born. 7 pounds 10 ounces. I was considered full term by three hours and forty three mins. I held my baby for about 1 minute before he was taking to be transported to the Strolley Hospital ( That's the place where all the heart babies go) Shawn and I looked into each other eyes and I knew from right that second that Shawn was going to be a fighter and that  I loved my baby more then anything.

Shawn's name-
Shawn- I just loved the name and it really wasn't a popular name any more I found. and it means Warrior, and A gift from God ( Shawn is truly a gift from God)
 Andrew- I was sitting in church and praying for God to help me think of a middle name for Shawn. All of a sudden Andrew popped into my head . I knew that right then and there that was God's way of telling me Andrew should be in Shawn's name.
Joseph.- Shawn happened to be born on St. Joseph Feast Day. ( May 1), My Opa who passed away earlier in the year his middle name was Joseph. And well my Mom prayed to St. J that Shawn would be born soon. and he was 43 mins after my Mom prayed to him.


Later that day when  I was discharged from the hospital I met Brad at the Strolley, And showed me to were Shawn was. Now see when you think of seeing you're baby you think no wires and eyes open. Nope not in this case. I found out that Shawn was very unstable and that it was possible he was going for surgery in a day or so depending if he becomes more stable. Shawn was on so much medication I cant even remember all the names of them. The one that was stuck with me the longest is the "ROCK" it paralysis the body. My baby ( 1 day old) was paralyzed. When I found out that Shawn would be going for surgery in the next couple of days I talked to the social worker and she got me in touch with the Catholic Priest and he came right away and baptized my baby...... Luckily Shawn became more stabled and ended up going for surgery on May 8 2013. His surgeon , Dr.Ross . Met with Brad and I the day before his surgery.  He was very informative and told us exactly what was going to happen.  I remember him telling me that 30 years ago they weren't even doing these surgeries, and even 15 years ago the out come was not as good as it is today. Dr. Ross made sure though that Brad and I knew that we would not be out of the " Woods" Until He's Second surgery....

The day of his surgery came and I remember all I did was pray, pray, pray and pray, I prayed that the Lord would guide Dr.Ross's hands during the surgery. I called my Mom while Shawn was in surgery and She told me. The strongest prayer you can pray is JESUS I TRUST IN YOU. Now this seemed like a simple prayer. but let me tell you...Threw this experience it has truly worked wonders... Shawn was in surgery from 7am till about 3pm. Dr. Ross came out and told us that the only " Complication if you even want to call it that was they had to make the shunt bigger."  When they told me we would go see Shawn in the PICU we went right away and my baby didn't look like my baby, he was swollen and just didn't look like my little Shawny. I noticed a team of Drs. around him and then I noticed his Heart Rate go up to 200 BPM. I couldn't  help it but to cry. All  the emotions that were running threw my head thinking my son's heart was about to pop out of his chest.! I noticed that one of the Drs. noticed me crying. He came over after and apologized for not being able to ask sooner if I was al right. I told him the problem on why I was crying and he told me " Not to worry its a typical thing for the heart rate to be high after this"

After a couple of weeks Shawn was transferred back to the NICI. Shawn had a breathing tube in and  I remember this day so clearly  May 20. 2013.. They took Shawn's breathing tube out and put him on CPAP. I thought okay one step closer to home.... Later that day  I got a called at 434 AM that they had to put Shawn's breathing tube back. I thought okay not a big deal we can try taking his BT out on another day.... 730 Am received another call from the hospital I told tell by the nurse's voice something was wrong with Shawn she told me " Shayla  Its Carrie from the NICI. Shawn isn't doing to well. I think you better come in"... The only thing running threw my head was okay Lord if its your will to take Shawn now then so be it. JESUS I TRUST IN YOU. I kept repeating that threw my head JESUS I TRUST YOU. When Brad and I got to the hospital which took an impressive 5 mins leaving  the RM house to being at Shawn's bedside.I remember walking down the hall so fast that I wanted to running and poor Brad was so tired and  out of it and not sure what was happening was trailing behind me.. we got to Shawn's beside and was informed that Shawn was more unstable then he was at birth....  Great  I thought I'm only 19 years old and my son was about to die and we where here to say our goodbyes.. I did lose my sister when  I was 16 years old to SIDS. I really couldn't handle losing my son  as well....
A lot of prayers have helped me threw that day and our time in Edmonton.... Shawn became more stable and ended up getting discharged from  hospital in Edmonton and transferred to Calgary on June 5...  Shawn was good and healthy. We went up to Unit 2 July 10TH or  so. and were discharged on yes JULY 18TH my BIRTHDAY!! what an amazing birthday present... Well Shawn was only home for 4 days and I had to bring him in due to the sweating, breathing, and vomiting. Shawn is now back in the hospital and we are awaiting to go home again.. pretty sure we will be in hospital until his next surgery which should be in September.... It was a great four days!!!!  Brad and I also broke up last night... Things just have not been good between us and maybe we are suppose to be together, but maybe not right now....


They People I have met during this have truly been amazing..


Ansyley- Sahen's mom.
Sahen was across from Shawn in the NICI before his surgery. I over heard  the team of DRS. talking during their rounds that Sahen was a HLHS baby, but of course I didn't want to mention anything to Sahen's mom as I was not sure  how she would react to me telling her " I over heard the nurses talking and I head that Sahen was HLHS so is my son" might have been a bit weird.  Ansyley and I ended up talking one day though, and that friendship was like no other friendships I have ever experienced in my life. Its like on a different level. They actually understand what you are going threw! THEY UNDERSTAND!!!.
Ansyley and I still keep in contact. and keep updated on our Son's we joke around how they can be like team S The Hypoplastics! and they can look back and say we have known each other since we were little and we have the same heart problem!

Arlene -Caleb's Mom
Caleb will be a year old in Aug.  Caleb received a heart transplant. It was really nice to be able to talk to another Mom who has a son with HLHS. We met during a parent coffee time that the Hospital puts on, and yet again another instant friendship. It was really nice being able to talk to Arlene . As she as been threw more then Ansyley and I have been threw.  We still keep in contact as well.

Blessie- Sila's Mom 

This family, is truly amazing! Don't get me wrong here all the families I have met are truly amazing.
But this family... It was another instant friendship. But this time their son didn't have HLHS. He wasn't born with a diaphragm! ? I didn't even know that was possible. Sila's is a twin  he has a sister named Hannah and they both were premature.. Hannah lucky was born fine. No really complications just the weight.. Sila's was so tiny. Sila's was right across from Shawn in the NICI. And what a nice family we started talking right away, It was really only a matter of minutes before we started talking. yeah sure our sons were different, they weren't born with the same problem. But they were both born with health issues. And yet again we could understand each other. and of course we still keep in contact :)

Catherine- Spencer's Mom

Spencer was beside Shawn in the PICI. Spencer was also a heart baby. But not  HLHS. But both of our sons were heart babies. Spencer has a twin Lexi. They were born premature. I Later found out ( the day before Shawn and I were transported to Calgary) that Catherine and Kevin were suppose to have Triplets but unfrounatly one passed away Rebecca ( RIP Rebecca I know your watching over Lexi and Spence)  I couldn't believe what this family has been threw.  I felt like we became really good friends for about the last week we were there. I really wish I talked to them more. They are great people. I would always see them around, but never really talked to them not sure what to say to them.. They have been threw so much! and they are a very strong couple!.

Candace- Avery's Mom 

This is kind of a funny story on how we met each other. we were at the RM house ( just days before we left to Calgary) and I was in the kitchen and they asked me where the forks where I  should them and I noticed that Candace  was pregnant I asked when her baby was due, what she was having, and why she was here? she told me that her baby was diagnosed with HLHS. I told her all about Shawn and what's he's been threw and that if she ever need to talk to feel free to call me any time my phone was on 24/7. I later found out that they were from Calgary!!!!! ANOTHER HLHS but this time from CALGARY! I was so happy to finally met a family who had a baby with HLHS that was from Calgary, this means Shawn and Avery can grow up as friends and always have that special relationship of knowing someone who has HLHS but from the same city!. I later found out that they were at the Children's Hospital here in Calgary,  I ran into them on the way to Shawn's room when we were readmitted.

 Marline- Jax's Mom

Marline and I contaced on a level because we were both young mom's Marline is only a few years older then me. I'm happy I met Marline and we ended up talking. not only could we relate to each other, but we contacted on a different level because were both young mama's dealing with a sick child in the hospital. Marline and I only got to talk for a week or so before she and Jaxs went  to Grand Parrie( where she is from.) The best advice she gave me was to get into a routine and stick with it they day will go by faster and it wont feel like its dragging on. I would give Marline rides home because she would take the bus home and she wouldn't leave till late at night, and it wasn't the safest for a young mom to be travelling late at night.. I feel like I have known her for years. we just contacted that well. we are still in contact with each other:)



All the Families that  I have met really have helped me thou the Hospital times. And also have made me realize I'm not doing this alone.

I Keep all the families that I have met in my prayers and keep them close to my heart.
These Friendships I have made I know they will last a life time.

some of the families who truly know my story and my age keep telling me how strong I am as a person... I don't understand why. I mean I just have to do what I have to do. God has chosen this path for me and I don't know why he has yet and I know I will find out when my time comes why God has put me on this path. I know he's watching over Shawn and I. I know he has a plan for us. and I know Everything will work out. We may not know why yet. but we will one day. I have learned to treasure each and everyday with my son and my family. Each day God gives you is a gift. I guess I took it for granted I was to focused on Hockey and all the little things in life. This experiences has sure taught  me to life each day to the fullest and to be thankful for the littlest things in life. Like being able to wake up each day and have another day on earth. 'Cause you never know when your time is up and God plans to take you home..

Thank you Lord for another day for Baby Shawn I know you have a plan for him.

I will keep everyone updated as much as possible with Shawn...

JESUS I TRUST IN YOU