GOING IN FOR OUR 20 WEEK ULTRA SOUND AND FINDING OUT OUR BABY HAS HYPOPLASTIC LEFT HEART SYNDROME AND WALKING OUT PRAYING HE WOULD LIVE.

        This Pregnacy was SO HARD and I was so sick but we were so excited to be adding another little one to our family. On February 4th, we dropped the kids off with Brett's mom and headed to my OB's for our big 21 week ultra sound appointment. We were so excited i just new it was another boy which I was just as happy about but Brett was sure it was a girl. I had been telling my sister for the last couple months that I feelt like there was something wrong, so more then anything I wanted to just get the comforting news that everything looked fine. My appointment was with Dr.Bean. I hadn't meet him before but he was very nice. As I was laying on the table he started at the head and went down saying this looks great that looks great. All of a sudden he kinda went quiet and I noticed him taking pictures of the heart. Right away I asked him, "is there somthing wrong". Well he says...the heart just doesn't look quite right to me so when we are done im going to send you to a Maternal Fetal Medicine Doctor just to have them make sure everythings okay. He said it might be nothing he but i want you to get it checked. He finishes with the ultrasound and tells us we are having another boy :)  When the doctor left I told Brett I was really worried and he said "oh im sure its nothing". We went out to the desk and a lady said "come down to my desk im going to call and make you an appointment down in Provo with the Maternal Fetal Medicine Doctor".  As Dr. Bean walked by she said  should i just get an appointment for them for the next time they come up and he said no, "they need to see him right now as soon as they can get in". Thats when I knew there really had to be something wrong. She called and they told us to come straight down. On the way down I called my sister Tobi to tell her guess what we were having another boy we laughted about how between us we were going to have 6 boys enough for our dad a basketball team and one on the bench. Then she says and everything is fine with the baby isnt it. I told her actually no, we are on our way to a speacialist to take a closer look at his heart. I really was still shocked that there really might be something wrong with his heart, but like the doctor told us it might not be anything so i was still not too stressed.

      I was laying on the ultrasound bed when the tech came in and started the ultrasound and said Dr.Schimmer would be in in a little bit. I kept asking her questions trying to get her to tell us something, anything, but she would only say the doctor will answer your questions. I could tell she was confused by whatever she was seeing then finally she said let me go get the doctor. He came in and didnt really say much to us just that he was going to take a look and then talk to us and answer our questions. He was showing the tech things and then he told her to go get the counselor. At this point I was SOO scared. I had no idea what they were going to tell us but i knew it had to be really bad for them to bring in a counselor. He waited for her to come in then started to tell us what he thought might be wrong. He said only the right side of your babies heart is working right. The left side is trying to pump alittle bit but is much smaller and barley working. He also said i think he also has Aortic Steniosis  and his mitral valve is leaking. He said "this is the worst CHD that you can have and with the mitral valve leaking there might not be anything they can do". They asked us about aborting, told us we could have that done really soon if thats the way we wanted to go. Right away we said no that wasn't even an option. Or when your baby is born you could do comfort care which would be take him home and then he would eventually pass away. We told them that neither option was for us and they said well there is these set of 3 surgeries that they can do if he makes it to delivery. Because of his mitral valve, and (I cant remember if this is right) the aortic valve(?) it dosent look good. The Aortic Valve(?) was very narrow and they told us if that closes all the way there would be nothing they could do.  Dr.Schimmer also said that at Boston Childrens Hospital, they can go  in while baby is still in the tummy and put a balloon in that Aortic Valve to keep it open but most end up not making it and they usually wont do it after 20 weeks and i was 21weeks and he said he thought our baby's heart was too bad he didnt think we would even be a canadite. Hearing all this really felt like an out of body experience, I feelt so bad for whoever was getting told this, it was the worst thing you could ever hear. It really didnt feel like they were talking about my baby I have had two other HEALTHY baby boys, this didnt happen to us. I hadn't even ever heard of a Hypoplastic Left Heart Syndrome, Aortic Stenosis or a Mitral Valve ..NOTHING,  He was very honest with me which at the time I didnt understand why he was being so mean , he right out told us this heart looks VERY bad I'm not sure they will even try the surgeries but if thats the route you want to go we will get you an appointment with the Cardiologist at Primary Childrens Medical Center. I could not stop crying, I just kept looking at Brett like just tell me they dont know what there talking about. He just put his arms around me and we both just lost it. I just couldnt get it, I feel this baby move , kick it felt like a normal pregnancy and I already LOVED this baby so much he was a part of my little family already. We were so excited about him, my other boys, Kasen and Riley couldn't wait for us to call them and tell them if they were having a baby sister or brother, they have been so excited about this baby. How would I tell them we wouldn't be bringing a a baby home, I just couldn't breath. I feelt like we were there for a very long time. The counselor was trying to get us in to PCMC soon but they couldn't get us in for two weeks. We walked out the door and I think both of us was just totally in shock, we really didnt say much for a little bit. I think we were both just trying to process what we just got told. "Your baby's heart isnt working and i dont know if there's anything we can do" I just kept playing everything over in my head he did say "this is what I think but once you get to PCMC they could tell you something different".  I was holding onto a little bit of hope, thinking well maybe he dosent know, maybe its not as bad as he said..  When we got to the car I made my first phone call to have to tell my sister and then my dad and mom that our baby only had half of a heart that was working and even that side wasn't doing so good. Those were such hard phone calls to make, I feelt like I was telling them about someone else. How could this be happening. Everyone knew I was finding out that day what we were having so all day i got texts asking what it was, it was so hard. That night we stayed at Diane's (Bretts moms) and we just stayed up talked to Diane about it and cried. We told the boys they were having a new brother but didnt want to tell them anything else until we new for sure what was happening.

      Those next two weeks were so hard and felt like they went on for months. My sister Tobi, was planning on having a family fast the sunday before our appointment and had mentioned it to a couple people in town . I got a phone call from our home teacher asking us if the ward could be involved in the fast and prayer. It was so neat to hear about all the families who were fasting and praying for our family and this sweet baby in my belly. John and all my uncles came to my parents house that sunday and gave me a blessing. That was the neatest blessing I think I've ever had. I could feel the spirit so strong it was truely so humbling. When I opened my eyes everyone was in tears, Brett told me that he had the strongest feeling and what a neat blessing he thought it was. I hope John knows how much that blessing meant to Brett and I and how much it meant for all my uncles to be there. I love my family so much.

      Wednesday had finally come i was so nervous . We left the kids in Lund with my family. We got to PCMC they put us in a small room to do a fetal echo.  They didnt even show us the baby's face they went right to his heart.The tech was the one doing the echo and it took FOREVER.  I would ask questions but he told me he couldn't answer them, that the cardiologist would be in when he was done.  The baby moved the whole time he was very wild. The Cardiologist then came in and did his own echo. Then when he was done he said he was going to take us in a room so we could talk. We get in the room and here are like 5 other people, you know its really not good when they have that many people in there. Really thinking back some of it is a blur so hopefully it makes sense.  The cardiologist got a little picture thing of a heart out and started telling us what was wrong with our baby's heart. He said he has Hypoplastic left Heart Syndrome which is the worst heart defect you can have and on top of that he has Aortic Stenosis and a leaking mitral Valve, And his Aortic Valve (?) was very narrow and if it closes completly before he is born there's nothing we can do. They said it never opens up more but could very easily close.  I had been hoping and praying that this would be better news than the last Dr. gave us and that they had been wrong and we would come up to Primary and it would be something easy to fix, sitting there with all those people and getting more bad news I just lost it , Brett and i both really just couldn't beleive it. The doctor gave me the options that I had already heard, terminating, comfort care and surgeries, but he said he didnt think the baby would make it through the surgeries because his heart was just way too bad . I asked him about a transplant, he said "there's not baby hearts just anywhere" I didnt like him after that. I feelt like I was barley holding on trying to do any and everything I could to save my baby. I remember looking at Brett and saying "they dont know this baby he is a fighter and he is strong". I know he sees this all the time but I was still trying to just figure out what i was hearing. He acted like that wasn't an option. I met with  Kim and Pat who were just wonderful after the doctors left. They stayed and talked to us about our feelings and helped us coop with it. We then walked out and got our next appointments scheduled and left. It was a very quiet ride home.

          They told me not to check out anything on the web because it would just scare me except for the CHOP hosptial becasue they had some good info and it would show pictures of what my baby would look like after the surgery to prepare me for what I would see. I tried for a while not even to do that becasue I knew it would upset me. I couldn't even hear my kids talk about the baby without having a silent break down. It was hard, I never wanted my kids to see me, we weren't ready to tell them anything yet. Ive never felt so broken down inside and yet had to act like everything was fine and be happy with my kids I know if i wouldn't of had my two boys iI would have been a wreck but they kept me grounded.

      I had another appointment with Dr.Schimmer in Provo todo one more ultra sound, and i had my last doctor appointment with my ob from American fork because they said i had to deliver at the University of Utah and have a high riskMaternal Fetal Medicine Doctor and then as soon as the baby was born they would rush it over to Primary Medical Center.  My sister Tobi went with me and Dr.Schimmers tech did my ultra sound she was super nice and she did 3d ultra sound pics for us Trey was sucking on his hand and it looked like he wave to us. I could sit there and watch that cute baby forever. When she was trying to get a 3d pic of his face he would stick out his tongue or put his hand right it front of his face he was so funny. So we didnt get the best pics but still very cute and i could already tell he had my chubby cheeks :)  It crazy how i could already tell how much he looked just like my other boys he was for sure our little boy.  Dr. Schimmer came in and was so nice he turned to my sister and said okay let me tell you excatly whats going on. He explained eveything to her which was so nice he was very thoughtful.  Then told me he would do everything and anything he could to help.

      My next Dr. Appointment i had my mom and sister's with me we had our girls weekend planned and we new Brett was going to have to take alot of time off when the baby came for the first surgery, so i squeezed in the dr.appt. I had been praying and praying that the Aortic Valve hadnt closed i was so scared. That was the only thing i thought i had to worry about . Boy was i wrong... We had our VERY long echo. I couldnt even sit up by myself when they were done and ive never had an ultra sound hurt my tummy was raw when we got done it was not fun. The baby didnt like it either they really push hard on them. Again we went into the room this time it was a girl cardilogist that i liked tons better. Same thing but this time there was 4 other people and My mom and my sisters. We sat down and she went over again what was wrong and then i asked about the part they were worried about closeing and she said actually it looks really good, whew i feelt like i could breath until she said . His mitral Valve is leaking so much there's nothing we can do , his heart now is not fixable. I really just wanted someone to wake me up from the horriable nightmare. Again she talked to me about comfortcare and i told her that wasnt and option i had to do EVERYTHING to fight for him. So again i said what about Transplant and they told me most babies pass away waiting for a heart. I looked at Kim and said are they telling me i should prepare more to lose this baby then keep it. The room was silent, i couldnt even beleive what they were saying. This little guy that i feel move and kick and i talk to and the kids kiss my belly because we already love him so much , it just couldnt be . I told them i just wanted to keep him in my belly forever where he is safe. The Cardilologist said that she would take our case to the bored and see if they would approve transplant becasue that was are only chance. We were also told in our first dr appt with PCMC when i asked about transplant that when babies get transplants so little they usually need another transplant before they were 10.But still were willing to do anything knowing how much things could change in 10 years that wasnt going to stop us. We walked out of there and i feelt like i just got run over by a feight train. Not a good start to our girls weekend. Then i had to call Brett and give him the news over the phone that our babies heart is not fixable , that surgries were not even an option . It was so hard hearing that but saying it out loud just made it more real.  That night we went back to the motel My mom and sisters went down to get in the hot tub. That was the first night that i honestly didnt know if i was going to be able to do this. I Lost it i found my self down on my knees praying more than i ever have needed the lord.  It was hard not to be with Brett ..
        I got home on sunday and that night after the kids went to bed Brett and i sat in bed and cryed and i just kept telling him i cant lose this baby. At this point they gave Trey a 10% chance of surving. Its all i thought about every second of the day. We decided it was time to tell the kids about Trey. We sat them down and told them that the doctors told us that the baby has a hurt heart and that when he was born he was going to have to stay in the hospital until he got a new heart and the doctors made him feel better. There was lots of questions mainly from Kasen being the older i think he understood things more. Then he started telling everyone about his baby's hurt heart but the doctors were going to fix it and give him a new heart he would say.
     It was the last weekend of April and we had a doctor appt on friday and then we were going to goto super cross in Salt lake and then Brett was going to leave the kids and i in Utah until the baby came. So we droped the kids off with Grandma Diane and went to the University of Utah to see my OB DR. Bryne. Well i was 32 weeks and dialated to a 3 and 85% effaced. and having contractions. So she put me straight on bed rest the Cardiologists said if he cam early he would even have less of a chane to make it. Brett took me back to Dianes and we decided it was Best if i didnt goto supercross. So poor Brett had to take the boys by himself and taking a 3 year old and 5 isnt the easiest thing. They gave me steroid shots for the baby's lungs in case he was to come early.
    Since i was on bed rest there was no way i could take care of the kids with out help so Brett was going to take them home and then Sasha was going to bring them back up the next week and stay up there with me and help me. That was so sad i was looking forward to taking them to the parks and hanging out with Grandma Diane just making it fun for the kids before the baby came because i knew how stressful and crazy it was going to get.  But we had to keep this baby from coming early, so i kissed my 3 favorite guys and wathed them leave. My sister in Law had came down from Logan to do my hair that really helped me get my mind off of things for a while and i was super excited to get my hair done. I needed a little pick me up.

  The next day i had been feeling contractions pretty strong but just took it easy and laid around had a hot bath. Tuesday i woke up with a hard contraction ive never had contractions wake me up before not with any of my pregnancy's . So i had another bath , Diane texted me to check on me and i told her i had had some contractions but i was fine, The whole day i kept trying to sleep and relax but it felt like one right after another i felt like i couldnt breath.I tryed timeing them but was having a hard time. I met my brother at paradise cafe for a drink and chat they had kinda slowed down so i was feeling alot better. I went back and about an hour later they were just coming strong again. Diane got home and i told her but i said im sure its me just being dumb she wanted to take me to the hospital but i was so afraid they would tell me no your fine just go home put your feet up but Diane got me talked into going she said lets just look at this as our trial run to see how long its going to take us so we know. So we get up there they hook me up and sure enough my contractions were coming every1 to 2 min so no wonder why i couldnt time them because by the time one would stop the other would start. So they admittied me. Thank goodness i have such a awesome sweet mother in law that insisted she took me up and then she stayed with me all night. I called Brett and told him they were keeping me but we decided that he would be okay to just come up in the morning. They gave me meds to stop my contractions, started an iv and got fluids going. Then my oxygen went low so they put oxygen on me the meds made me feel like i was having a heart attack and along with the oxygen i could not sleep and the bed was not very comfortable at all. Poor Diane had a chair that pulled out to sleep on.  I had a NICU nurse come over to talk to me to see what i wanted to do if i had my baby that night she said i need to know what actions you want us to take. I told her i wanted her to do whatever she could to save my baby she said okay i just needed to make sure thats what you wanted, she said she would get the NICU nurses and staff ready in case i had him tonight. Talking with her .. She was the first one that had every told me that babys can be on PGE for quite awhile . PGE was the medicine that would be givin to my baby in a picc line which is through the leg that goes right to the heart and that med would be what kept the ductus open which would keep my baby alive once that closes they dont live very long. I just thought it would have been nice if just one of the cardiologist would have mentioned this because they never gave us any hope of Trey making it . That would have at least been alittle something to tell us, knowing that could by Trey alittle more time would of been a little comfort.  The meds that they gave me to stop my contractions were making my blood pressure go really low . So i feelt really tired.
     Brett came up the next morning and they moved me out of labor and deliverey to another set of rooms. And they said they wanted to keep me a couple days. We got a call from Kim at PCMC telling us that they took our case to the board that moring and we were approved and she wanted to know if the team could come over and talk to us and get started on all the transplant stuff. It was so crazy that whole day. We had people in and out all day long.  The pharmacist came to talk about ALL the meds Trey would be on once he got the transplant ...Holy cow there were so many. Then she wanted to go over cost for them. It was going to run us around 2,000 a month. Very stressful to hear. We also had to have a psyhic test done, where they had to go through all are back ground stuff . That was reall hard we had to go in to Bretts little Brother Brooks passing away and dealing with death and a ton of stuff i never new you had to go through for your baby to get listed , i guess they wanted to make sure we werent crazy. LOL. I have never feelt more out of control crazy in my life and thats when i get hit with a crazy test .:). We filled out a ton of papers that dayand after meeting with everyone i was beat. They also had to come take a ton of viles of blood for the transplant papers. I got vitals done all night long and pills to stop my contractions, so i didnt really sleep that great i was very glad that Brett sleeps really sound. The next morning first thing i called my boys. I already missed them so much. I was so happy that my sister in law did my hair acouple days before, because when you are sporting a hospital gown there not to much that makes ya feel good.  But my hair looked AWESOME..   Teej and I had been wanting to get a lap top for our business so we decided it made since to go get one then i could use it while i was in the hospital and then we would have it. Oh my i am so thankful that Brett went and got me one, it really helped keep me sane. That weekend Diane came up and Bretts cousin Cassas baby was in PCMC so she came over and my friend Kristi and her husband Travis came and brought me the biggest oreo milkshake.It was so yummy. Then that weekend Mandy Bretts sister came and i got a visit from Lauri. Mt wheeler Bretts work sent me flowers. We really feelt very blessed to have so many people thinking about us. I ended up being in the University Hospital 5 and a half weeks. I had stress tests once a week. They moved me to a huge room with an awesome view. I would lay in my bed and watch the life flight helicopter land at PCMC. I talked to my boys a million times a day. One day i was talking to Tobi on the phone and all of a sudden she yells Riley what do you have ? Oh yuck no drop it drop it.I had no clue what was going on , Thn after lots of noise and Tobi saying hold on in a panic tone. She gets back on and told me that Riley brought a dead gropher in the house to her i guess he was just holding it and after she finally got him to throw it outside and got his hands washed she asked him why did you pick that up he said becasue the cat was playing with it so he thought it was okay to play with. LOL... I about died i was laughing so hard but also feeling very bad for my poor sister. She went from having 3 boys to 5. Ages range from 7 to 2 . She just became there second mom and REALLY stepped up when i needed her the most. She just took my kids right in. Im so thankful for her and what a strong and kind person she is. I really could not have been in the hospital on bed rest for that long with out all the help i was given by my wonderful family. My Dad and Mom , Sisters, Cousins and Aunt and Uncle thats just took care of my kids while i was gone that worried about there feeling and treated them so kindly. It was hard for my kids and they got through it because of my family. I will never be able to thank them enough for everything they all did. 

  The nurses would do vitals every four hours around the clock. My baby ..Baby Trey :) everytime they would listen to his heart he was wild he would move everywhere. I got caught up on my movies. I had never seen the twight movies so i watched them and loved them.  Thankful to my little sister that let me use her netflix i would put moveis on at night to help me goto sleep. It got so lonely up there, i couldnt wait for the weekends when Brett would come and bring the kids. I was on strict bed rest and so i was only asposed to go from the bed to the bathroom. But when the boys would come they would put me in the wheelchair and take me for rides. Riley would sit on my lap and Brett and Kase would push me. We would go outside or to the cafetria and get ice cream or lunch. The nurses were so good to my kids. They let me stay the night in my room which was so neat it was the hardest thing ive ever done going from being a full time mom i hardly even get babysitters .. To not having my kids with me but here and there once a week sometimes i wouldnt see them for 2 weeks. It really about killed me. So when they would stay i would cuddle the heck out of them Riley would usually sleep in my bed with me. I had a very nice lady come and bring them a big color sticker book and once a day the snack cart would come around and they would give them jucie and cookies or what ever they wanted. Brett was addicted to the PINK cookies so everytime they would come he would get one and days he was in Nevada he would call and have me stash pink cookies for when he came up. Hehe..   I had been there so long i got to know the nutrient lady very well so she knew things i liked and didnt like . She would call my room and say they are having this is that okay. At the end of my stay i got to where most of the time i would change it to somthing else like a choc shake and cheeseburger. She was very nice. They really did treat me so good. And i had so many wonderful people come see me and bring me magizines and word search books and my favorite cereal Peanut Butter capt crunch.. :) My friend Buffi came alot and kept me company it was so nice when people would come it really helped break up my day. So to everyone out there that came by thank you so much it meant so much and i enjoyed the heck out of each one of you. One night i started just not feeling very good started having contractions so i finally told my nurse they hooked me up and sure enough my contractions were 1 min apart and then they started coming so hard. They checked me and i was a 5 and the doctor on call came and said call your husband im not sure he'll make it because you are having this baby. So they take me to labor and delivery. And i was dying the contractions hurt so bad . I called my family and Brett called his mom and they all headed up. Diane got there first and the doctors decided they were going to give me double the pills to try and stop my contractions and a bunch of iv fluids. Well about the time that all my nevada fam arrived  (oh yes and they drove in a snow storm).. They got my labor stopped. My family teased me and said i must have just really wanted to see everyone. . A couple hours later they wheeled me back to my room. And everyone but Brett went home. And i got to ahve him for a couple extra days and the weekend. Brett would take me for walks and we would go outside it was nice to have time for just the two of us togther, our life had been so crazy and such an emotional roller coaster and we new as soon as the baby came it was going to be even worse. So the time we got to spend together i really loved.  I missed Kindergarten registation with Kasen i cried all day because i wanted to be there so bad with him , my sister took care of it just fine but i really wanted to be there.

  This baby was getting so big.. I was getting huge, bed rest does not help when you already are a big pregnant person. Ya i was getting SOOO BIG.. I went into labor 2 more times one of those tims was in the middle of night again and my husband had to come up and they got me stopped again and then the next time i didnt even call Brett i texted Sasha to let my mom know just in case and they got me stoped again so i called Brett that next morning when i new he was up and told him he was mad that i hadnt called him.  

  Of course the new doctor that i had started seeing because she was high risk they said she had to have surgery so she wouldnt be back for a couple months. So i had no clue who was going to deliver me. The doctors on call would come in and they said they did not want me having this baby early becasue he had alot less chance of surving. They were amazed that i was walking around my room dialated to a 7. They did an ultra sound a couple weeks before i was due because they wanted to see the size of the baby. They told me he would be little and they wanted to see what they would be dealing with on size. Im laying there as she doing my ultra sound and she says oh my goodness i cant even measure his legs becasue they are so big ..she couldnt measure anything correct becasue he was  so big .They had by there calculations he was 42 weeks along. I was 38 weeks.. She told me it looked like he weighted 9lbs 12oz. HOLY COW.. I freaked and she said he is so ready this baby is cooked .LOL. I asked her how accurate 9lbs was she said it can be a pound either way. GREAT so i could have a 8, 9 or 10 pound baby. YIKES.  So the next time i seen the doctor i asked her is there anyway she would induce me becasue i was worried about how big he was going to be but she still said no. The doctors were shocked to hear this. Well that was a tuesday and the doctor cam in later that day and said they would induce me on monday..Tuesday night i had contractions pretty bad all night long but i wasnt going to say anything to the docs i just wanted to see if it would pass and it did kinda.. They told me if i went into labor again they were just going to let me have him . Thank goodness i was so sick of getting stopped everytime i went into labor. But now i was almost 38 weeks.  Wednesday night was a rough night i couldnt even sleep i was having contractions so bad and my back hurt my legs hurt i feelt like i couldnt breath allnight. That morning when the doc came in i told her i wasnt feeling very well so she said she would have someone come check me. Well no one came until around 300 and i was dialated to an 8 and 100% effaced and they said i think you are going to have a baby today. So i got on the phone and got my family all coming. Brett called his mom and Diane was on her way. I had been waiting forever it feelt like for this baby and i was scared to death for what was going to happen after he was born but i new it was time to take the next step. They got me all ready and wheeled me over to labor and delivery. I was shaking i was so nervous. I had the funniest nurse. She was from the south and had been a nurse for over 30 years. The doctor came in and wanted to break my water but i told them they had to wait until Brett got there because once my water breaks i go super fast. By this time it was abput 800. They wanted me to have the baby soon so it wasnt in the middle of the night because they had to have the CICU team ready for Trey and the NICU team an also life flight all ready. So they told me to tell them when Brett was an hour away and they would break my water. I talked to Brett on the phone and we decided that i would tell them when he was in the parking lot because he was not going to miss this. Diane got up there and was with me for the first epideral. It took forever and hurt so bad but then finally he said he was done. Then nothing happened the dumb thing didnt work so they had to do it again. Ive never had a epidera; hurt so bad he couldnt get it so he kept moving up my back finally he asked for the lady who was over him to come in and do it she couldnt even do it . Oh ya and Brett got there right before this and so he was in front of me holding my hands . I was shaking so bad because it hurt so bad. I had my head down and i hear the nurse say are you okay i answered yes and she says no not you. I look up and see Bretts face sheet white, just about ready to pass out . The burse grabs him a chair and sits him down takes his hat off starts fanning him and grabs him a sprite. She was so on top of it. She gave Brett crap the whole time, i really liked her :)  Brett blamed me he said it was because i was shaking so bad. It took them so long to do my epideral i finally said just quit i will do it with out and she said i think we almost got it. I still have a scar about 1 inch long from the epideral. NOT GOOD...  Well then they broke my water and like 10 min later i was pushing this baby was ready and so was i . Diane and Brett where in the room with me and my doctor stepped back and let this young kid that looked like he was my age or younger deliver Trey, at that point though i really could of cared less. I pushed a couple times and they said okay go ahead and reat i said no im ready and 2 more pushes and i got to see the chubbiest little miracle . They told me he would come out blue and might not cry. He came out the prettiest pink and screaming. The first thing i noticed was his big hands they were huge. And rolls lots of rolls. It was so hard for me they wouldnt even let me touch him . They cut the cord and there was a window in the wall that was right into the NICU that they handed him through.  Dad and mom and Tobi and John showed up shortly after. They were all trying to look through the blinds of the window and i heard one of them say look at those hands there huge. HEHE.. He weighted 8lbs 9oz. He was a big baby . He didnt look at all like a heart baby. That was so hard he looked so healthy like i should just be taking him home. They were placing all the lines and everything in Trey so it took them forever. I got wheeled back to my room. They dont put you in the normal mother baby until which was really nice it was already so hard for me i didnt want to have to hear healthy babies be with there mommies , i wanted my baby with me so bad it hurt.We were all in my room sitting there waiting to see Trey. Life flight brought Trey into my room before they took him over to Primary Childrens. He was in a little incubater that he was almost to big for.lol.. and then it was on a long bed with wheels. It was so neat to reallly see him for the first time.. They took the side down so i could touch him and kiss him. Other than the lines they had already put in him he looked like a healthy baby, he was the prettiest color and didnt look as sick as he really was. He was on a medicine called PGE that was in a Pic line it went through the back of his leg and right into his heart  keeping him alive it was really hard to stop and realize how unstable he was.  The Life flight team kept asking me questions  i couldnt even concentrate to answer them i remember thinking i wish they would stop talking to me so i could talk to my baby and kiss on him. Then it was time for them to take him to PCMC. Brett went over with them he said they  ran the whole way. I was so thankful to have my family and Diane there with me it helped me not fall to pieces. It was hard not having Brett there but i wanted him with the baby.By the time the baby finally went over it was around 1am. About 20 min later Brett came back and said they were placing more lines and doing echo's and xrays and they would be done in about 30 min. So right at that 30 min mark i asked Brett to wheel me over.  It was super hard to see your brand new baby hooked to so many things. There was IV's everywhere. They let me hold him it was the best feeling in the world . For the last 3 months i had been told thid baby might not even make it to delivery and had been given time after time the choice to end my pregnancy and now i was holding this precious little guy, I new right then Brett and I had made the right choice and wouls still fight everyday to keep this little man here with us. He was the most special gift. Brett has such a kind heart when they asked if we wanted to hold him i knew he wanted to just as bad as i did and he insisted i hold Trey first , it meant so much to me... We both took turns holding our new baby until about 5am then decided we better go try and get alittle bit alseep. So Brett wheeled me back to the U. We slept until 8am and then got ready to go back over.  When we got over there the team had stoped to make there rounds and they talked about Trey what was wrong with him and just that they were trying to keep him stable until he got a heart. John came and gave him a blessing before he left. It really meant alot to me. We also got the offical letter that Trey had got put on the transplant list, so they handed me the letter and a pager and told me to always keep it on us. The transplant team is just awesome they are so kind and i loved working with them. It was so fun calling my boys and telling them Baby Trey was here they were so super excited. It broke my heart not having them there with us but we werent sure how stable Trey was going to be when he was born so if things went bad fast like they had warned us i couldnt of handled having the boys there, so we decided they would stay in Lund with my family until  we new more. But we sent them lots of pictures im sure my cousins phones were full of Trey pics :) They wouldnt let Trey eat the first few days then they started TPN which is iv fluids that have nutrient in it. We had the most wonderful nurses that cared for Trey.( Really the first month was a blurr so im really trying not to forget anything)  Treys Aunt Mandy came down from Logan to see him and most of my family left but Grandma Diane and Mandy were there..  Our Families were such a strong support for us we really could not of got through this with out them." Its so crazy what a Strong bond you can feel with someone you just met.." We noticed that by TRey there was another little boy that looked like he had already had an open heart surgery and his name was Tritton , within the first day we started chatting with his mom and dad , little did we now we were just meeting some friends we would have for the rest of our life. Those two babies already had a connection that i cant even explain but i could feel so strongly and i feelt like we had known Trittons mom and dad forever. I only had Brett for the first week and a half. Danielle and Jesse were such strong people here they had a baby that they almost lost because they didnt even know anything was wrong with him But  they were always checking on me and were so kind to check on Trey when we werent there. We are very good friends with them now and will always have a speacial place in our hearts for them.

  We had been there for a couple days and Trey was stable most of the time, but i think it was the 4th day i was sitting by his side rubbing his fingers and taking to the cardiologist doctor she was explaining some things and Brett was behind me and my nurse was standing there. I was looking at Trey while listening and i thought his nose looked a little blue then his lips started looking blue right then i went to say something and TRey crashed It was the SCARIEST thing ive ever seen in my life. He went complety blue and liveless the nurse was right on top of it she started CPR and the doctor helped and for what was maybe acouple minutes feelt like forever they worked on him and got him breathing again, Brett and i were a mess we thought we had just watched our baby die. That was really hard to shake.. Thankfully they got him stable again.

It was about i think midnight the second night that we were there and we were sitting by Trey and all of a sudden all these people started coming in all excited hugging each other and at first we were like what the heck is going on, then we found out that a little girl that didnt have much longer to live just got the call that she got a heart. We didnt even know the family (yet)...and Brett and i were just balling it was so neat and it gave us such HOPE that miracles do happen and it could happen to us to. We were told by the doctors that most babies die waitng for a heart so any hope we could get we took ... I was so happy for that family and i new first hand how they feelt. That was another miracle i got to witness first hand while at PCMC.. We later got to know this family Very well and the dad of this little girl everytime he would see me and Brett would say "Dont give up its going to happen tonight its going to be tonight" It was nice to have someone always being postive about Trey getting a heart. They were the sweetest people him and his wife and always asked about Trey anytime we seen them. It really amazed me how neat and speacial people can be . Everything they were going through and they always wanted to know hows your little boy.   One night it was about 2am and i was in the cafetria taking a break from Treys room and he came in and gave me a braclet for me and my husband  and heart pin and told me not to give up , to be strong and my little boy would do great..

    They were having a hard time keeping Trey stable so they decided they were going to do a surgery to try and get him by until he got a heart. They said this surgery they werent going to have to crack his chest open they thought they could do the balloon with a cath through the groin and then after that procedure was done they would take him to the OR and put PA bands on and they would open him but not have to crack the chest open, so they said every surdery is scarey but we do it all the time and it should go easy. My mom and dad were on there way up and Bretts mom . The day he turned a week old was when they had schudeled it, So that morning we got there super early and they were just going to do the cath were they were going to Balloon the aortic sept. they decided to ust do it in the CICU in his room. I talked to the Dr. who was doing it and he said he does them all the time and it would take 15 min and he would be out so we just walked around the CICU and then went and sat in the waiting room. 30 min went by and finally i had to go see what was going on , we get i there and i walk up to his room and the Doc was ust walking out i said how did it go. He said you know it didnt , i ust couldnt get it in there and Trey started having SVT's and we had to shock his heart so i didnt want to mess with him any more . I have better dies and stuff in the cath lab and a better machine to look at it so we are taking him down to the cath lab to do it. Great .. The first really easy thing had already been not so easy and Treys heart was not liking the cath being in there. So they took him right down and said heres a pager will page you when he's done so we followed Trey down then went to get a drink and the wait started again. We went up to the CICU and went into get my drink cup and still hadnt got paged but noticed Trey was already back we walked over and the nurse said did the doctor talk to you, um no we said we hadnt even got paged yet. She wouldnt answer any questions , she just said you'll have to wait for the doctor. She paged the doctor that did the cath and he came in and said im sorry but i couldnt do it. He said out of all the years he's been doing this he's never had as hard of a time and when he was trying to do it Treys heart was really having a hard time and they had to shock him so he said he stopped. Now they were going to have to crack his chest open and do Open Heart Surgery. I was so scared they were ready right then to take him back and i just stopped everything and said he needs a blessing, my nurse said theres not time everyone is ready for him in the OR but the tech said nope they can wait this is more important so we rushed around trying to find someone to give a blessing and one of the Nurse pactioners stepped up and said he would do it , he didnt even know us and he gave Trey such a special blessing. I could not have let me go with out that blessing. We walked down with Trey to the OR and thats were we had to leave Trey in Dr, Kaza and Gods hands. It was so hard to see them take my week old baby and know that they were going to cut him open , you shouldnt have to think about that when your babies 1 week old. His little body shouldnt already in life have to go through an open heart surgery. Brett and I went to the surgery waiting room to wait it out.They give up dates every 15 to 30 min. They came out with the first update just to say they had just made the insicion.Then they came out to tell us he was on the bypass machine. The next update wasnt so good they said he kept having svt's and they kept having to pace his heart. We were so scared before he was born they told us they didnt think his heart could make it through a surgery and here we were, i feelt sick the whole time. We had a couple more updates that were not good, then another guy came out and said everything went good and they were done and Dr.Kaza even closed his chest up which they usually leave open if theres any question of something not looking right or swelling or lots of other reasons and for him to of closed it he said meant that it went well but Dr. Kaza would be out to talk to us. We were so thrilled after so many bad updates this was the best news. Dr.Kaza came in and took us in a little room and said he thought eveything went really well he said at first he was having alot of svts but then once they got him stable again it went really smoothly and he closed up his chest which was huge step from leaving it open. He gave us a peice of the conduct stuff he put on Treys Pulmunary Arties to band them which was cool. Dr. Kaza said the next 48 hours would be the most critical  so now we just wait.We had to wait 30 min and then he was back in the CICU. I kept prepareing myself for what i was going to see but i dont think you can prepare for that. Seeing your baby on a ventilater and knowing that machine was breathing for him and iv's everywhere they could put them is HARD i had to dig really deep to keep my self from just falling apart. He was very swollen and very highly druged. He had chest tubes in and drainage tubes , he had wires coming out his belly that went right to the heart, these wires they used to pace his heart when he was having svts.He just looked so miserable. He was vey sensitive to lotions, soaps everything and they tape there eyes shut and so he was red  all over his face from that and anywhere they had put tape he was rashy. When they shocked his heart before the surgery during the cath he came back with bright  red circles on his chest from shocking him. Poor little dude :( But he was still with us and fighting to stay, thats all i could ask for.

When i got discharged from the hospital we stayed in a motel that night which was so hard because i was pumping every 2 hours and i didnt have a pump yet so we really didnt sleep because we had to drive to the hospital evry 2 hours then we wanted to be back at 6 for rounds. Then that night week we stayed at the ronald mcdonald house. But since Brett was going home and we had no idea how long it was going to take to get a heart for our little man and i would be here all by myself we decided to buy a camp trailer and park it at the hospital, that was the best thing we could have done. It was so nice it was right in the parking lot and i never left Treys room until around 1 or 2 am and then was back up there at 6 or 8. At first i thought it would bother me to be out there by my self but i was usually so tired and woren out that i would fall right to sleep and it was fun to have a place for the kids to come stay with me, they loved the trailer.

Recovery was really hard Trey was having Brady's really bad and svts. But within a couple days was able to come off the Vent which was so neat. He loves his binki and it was hard not being able to give it to him. And when they are on the Vent you cant hear them cry because it goes through the vocie box. So i could tell by his face he was crying but no sound. It was super sad... They told me i wouldnt be able to hold him but i had some AWSOME nurses so it wasnt to long that i had to wait :) I needed to get that baby back in my arms.There is so many wires and cords that i felt so bad for the nurses everytime i asked to hold him they would get tangled and a mess but the nurses were so good about it and making me feel like it was no problem. He was on so many meds right after .  But everyday it started to seem like we were getting rid of either a med or line or chest tube. Recovery started to go really good he was pulling right out of it. What a champ!!!
   One day i told my nurse that i thought his hand looked red and it had an iv in it so she said she would see if it flushed and if not take it out well when she flushed it here came the water all over his hand so she took out the IV and his hand was like double the size of his other one(when they have an iv there hand is taped to a board and you can hardly even see the hand. ) It was bright red . well they had Lipids going in that IV and it had come out of the vein and was going into his hand . Lipids is fat so not a good thing . It looked so sore and it was SOOO tight. That poor little guy didnt need one more thing to make him not feel good he already had enough. I called Brett just in tears, the nurse felt really bad.

We had so many people come and see us while we were there it was so neat to see all the support we were getting i really dont know how we would of done it without all the PRAYERS.. I loved having people come because it was so nice to see familar faces and it erally broke up my day. I had to be at the hospital to pump every 2 hours which made it really hard to go anywhere. We would run to the store and it was like we were in a race the whole time trying to hurry and get back. Pumping was so hard for me i never had to really pump with any of my other kids. I dont even use bottles , i nurse for around 13 months and by then they have a sippy and its just way easy for me. So i really struggled with the pumping, Heather one of the nurses was so sweet to me and helped me out a ton. I thought it was very important for Trey to get my milk so i was willing to do anything to make sure i could do that for him. But everytime i would go in that little room that just feelt cold and lonely i would sit there and cry the whole time i pumped . Pumping gave me the loneliest depressing feeling, i ust wanted my sweet baby cuddle with me being able to eat the way a new born baby should be able to and that was taken from him and me and it was hard to be okay with that. And it took from me being with Trey which made me mad . I had to just keep reminding myself even though this was very hard i was doing it for him and i would do anything for any of my kids. The next couple weeks they would do echos to see how his heart was doing he still was having bradys and other things they werent sure why he was doing  but he was still Stable . Everyday that he was with us and stable was agood day.  Everynight when i would go down to the trailer and goto bed i wouldnt Pray that he would get a heart because i new what that meant for some other mom. I would pray that god could do everything he could to keep my baby here with me. Its hard being on a transplant list becasue thats ALL you think about , i carried that pager with me everywhere i went and was always thinking maybe tonight , maybe tomorrow. After his surgery i was really scared that the heart when come to close to his surgery because i new he needed to be as srong as he could for the heart transplant o be able to make it through and so each day that he got better and better and stronger i would relax alittle more. It was really werid for me when i would have someone ask about Trey and i would say we are waiting on a heart. Or saying he needs a new heart to live, i would feel  like i was telling them about someone else. Never thought i would be in this spot, facing losing a child, the worst thing you can ever do.. Thankfully i have a big sister that i could call and just lose it to at times i really thought i was going to go crazy being in there and seeing everything and what stess it is day to day when he wouldnt be breathing very well or when he had to have a blood transfusion and my husband wasnt there to help go through it.
   We hadnt let the boys come up right at first because we werent really sure what was going to happen, then they both got sick which was so hard i wanted them to see Trey before his surgery but we new they couldnt be around him until they were 100 % heathly. Being a stay at home mom having my 5 and 3 year old with someone else while they were sick ust killed me i wanted to be the one there holding them and making them feel better i hated being split between my kids theres nothing worse then that, luckily they were very well taken care of. A week later they were all heathy and my cousins were bringing them up i think it was acouple days after his surgery i want to say... I hadnt seen them for a couple weeks i was so excited it puts me in tears just remembering how excited i was to see them.  When we first tool them up they had a girl take them and make little buddies with her and she had ivs they put in the buddies and little gowns and she had taken a pic of Trey and she showed it to them and explained everything that was on him, they didnt want the boys to be scared i thought it was supe nest of them to do that. When we finally went in both boys couldnt wait to see Trey they had been talking non stop about him and couldnt wait to see him, we washed them all up and i even had them wear masks becasue i was ust way nervous about Trey getting anything even though i new they werent sick. When we got over there they were so good they would touch his hand and of course Riley just turned 3 so he was asking all sorts of questions . Whats this for? Whats that? how come?.. But Kasen sat right by Trey and just started singing Twinkle Twinkle really quite it was the cutest thing and so sweet. He did that every time he went in to see him. He is such a sweet big brother. Riley finally had had enough of being in there and having to be quite and sit still so we werent in there a really long time. I took my cousins back to see Trey. Katie and Kealey were right by his bed and i was alittle bit away talking to my nurse then Kealey turns to me and says lets go get something to eat i dont really feel very good. So she takes a step back and passes out Lands on Katie and my legs so we yell for my nurse and lay her down then she came back too, they got her some jucie and crackersand had the Np check her out then we left to go get something to eat. She was pretty embarrassed. :) I was just glad she was okay. I loved having all 3 of my boys in the same state. I had really missed them. There was a play room that had a ton of fun toys that they loved to go to so that was fun to be able to be right in the hospital and have a place i could go play with them.

Trey's little body had been doing things its own way which had doctors on there toes alot but one thing he would do is his oxygen would drop LOW and he would desat but then come right . He sats really low having HLHS but they want him between 75 ans 85 well he would drop to the 50 then come right back up but my nurses new that what he did so they woud just watch him and make sure he came back up on his own. Well one night i was sitting holding Trey and i couldnt see the monitor from where i was sitting . Well it starts beeping like it did ALL THE TIME.. So i looked down at him he was sound alseep but as far as i could tell coloring looked fine . Then i see this nurse running down the hall i was shocked when she ran in Treys room grabed the oxygen bag and starts bagging Trey my nurse had just stepped out to grab something. I said what is he at im thinking he has to be in the 40's or 50's the way she was bagging him and she says 62, I said wait he does that he'll come back up  and she didnt even listen to me and just kept doing it poor Trey was screaming and she was pushing so hard on his face with the mask that it was hurting my arm. Finally my nurse comes in and she said whats happening the other nurse told her that he desated and went blue..WHAT.. she was pushing so hard on his mouth that yes he was blue around his mouth from that ,, It was dark in the room she hadnt even turned the lights on.. I was LIVID.. So my nurse says oh so did you ust turn his O2's up. She says oh does he usually go that low . Ya that would be ehat the flip i told her,, So my nurse turned him up a little and that was that.. I was so upset. I went down to my trailer and lost it i just kept seeing her bagging my baby that was screaming, if he's screaming he's doing okay..I feelt so bad for my poor baby like he needs his lungs blown up. UGGGH. I finally went back up and talked to the Resident about it becasue i was so upset. She said yes the nurse should of turned on the light took him out of my lap and looked him over before she started baggin him and she should of listen to me i know im JUST MOM but im there 24/7.  Trey did keep de sating alot and having bradys but most of the time he came back up on his own.

I sent Brett pics all the time of Trey and he would send me pics of the boys it was so hard for us to be split up. I really was just on survial mode and trying to be stronge but i really missed my husband and little boys, my sister had to take Kasen to kindergarten sign ups it was sad not being the one taking him. I talked to my kids everyday at least 3 or 4 times.
The first month went by pretty fast i had met some WONDERFUL nurses that i ust feelt like were family after a while they loved my baby and it was nice when they would have him because i would relax alot more, One of my night nurses that we had alot and we loved made up a schdule for other nurses to follow mainly saying that mom likes to do everything including bath and to make sure they weight everynight. I had started feeling better about staying in the tralier by myself i had a pump in there so i could pump in the middle of the night with out going into the hospital.
  At about 3 weeks old when Trey was recovering well from his surgery i started asking if i could try to nurse him they said he would have to pass a swallow study to take anything orally and they didnt think he would becasue he always had spit bubbles on his mouth and they didnt think he was swallowing his sucreations. So they they took him down to do the swallow study and when they came back they said he passed . I was super excited so i asked again can i try nursing him. The doctors all said no becasue he would ware out and heart babies cant nurse, and he would desat when he ate it was just to hard for heart babies But then the next day the doctor said speech therapy was coming to work with Trey on bottle feeding. So i said if he can bottle feed then i want to try nursing. LOng story short i faught them for a a couple days about this and they said no nursing because they wouldnt be able to tell how much he got and i feelt like i had fought everyone i had talked to to try to nurse my baby and emotionally i was spent and was so upset about it i was ready to just give in then i had a mom right next to me with her baby boy and i kinda told her the story that they said no and she said they told her the same thing and she wished she would have fought them and she thought i should be able to try to nurse and then the next day my nurse called down and said speech is on there way to try a bottle, i told her not to let them do anything until i got up there , i walked in and i hadnt ever had thid nurse before and she i told her that i just didnt feel good about the bottle feeding and she said if you feel that strongly about it dont give in. So with her saying that and another heart mom telling me keep fighting for it i held strong when they came in to try a bottle and i finally got them to argree to atleast let him try . They had like 5 people in there watching to make sure he didnt desat or ware out. Trey was a CHAMP that little guy had been tube fed for almost a month and went right to town nursing like he had always done it AND his numbers looked better nursing then before i started. I was one happy mommy.. The next day i came in and they had pulled the tube i was shocked . Then i was nursing every 2 hours around the clock. They weighted Trey everynight and if he was down alittle they would threaten me that he had to get high cal bottles as well or put a tube back in . It was the biggest stress evrytime we weight him i was scared to death that they werent going to let me nurse anymore. They tried bottles acouple time and he wouldnt take them and they would make him throw up so finally i had a doctor say that she thought he was doing fine with just nursing so we never had to do high cal i just nursed him that was so nice becasue that also meant i didnt have to pump as much. Which was good becasue the CICU had run out of room for my milk i had filled up everyplace they had. They dont make it easy to nurse in the CICU because no one does it , it was the most stressful thing . We would shut the doors and doctors would just walk right in so my nurses made me signs saying please dont go in and they still would walk in, i couldnt leave the hospital longer than 1 hour because i nursed every 2 to 3 hours and by th time i would get done with a feeding and burp him and change him an feed on th other side i usually had maybe an hour , it made i hard to have any breaks from th hospital.. but i new thats just what i had to do for my baby and i as willing to do anything i could to make him as strong as i could.

BIG NEWS!!! Trey would get an echo every tuesday and a chest xray once a week as well and usually they would say it looked the same when i asked. This one day Trey was about 1 and a half months old this doctor came in and said he had ust got done looking at Treys echo and there was change right away i was scared. He said that the mitral valve that has had major leakage , isnt leaking very much now.( We asked at the very first if it could ever leak less and they said no it can leak  more but would never leak less). I was shocked by this. The doctor said he thought it was worth them taking to the bored and all the doctors talking about it and seeing if they thought transplant still was Treys best option.  They met every wednesday(i think) and this was a tuesday so they were going to let me know the next day what they had decided he said they still might say for sure tranplant but i just think they should  relook at it. I had a transplant meeting later that day and i was telling them about it and the main lady over transplant said no im sorry i dont think they will do surgeries  becasue the size of his heart is really big . He needs a new heart. So i honestly didnt know how to feel about this new info .. we had been told for the last 4 months that this babies heart was not fixable and the only option was transplant so we had been in that frame of mind and hoping our little guy got a heart. I didnt know if i hoped it would change and they be able to do the surgries becasue the doctors told us his heart wouldnt make it through them but now they were talking about doing them . I really had started to really have a strong testimony on faith. Before all this i really struggled with faith and now i honestly can say i have a huge testimony of faith and prayer. So i decided i couldnt make myself sick over this trying to decided what i was hoping for , i just prayed and new that it was in the lords hands and what ever they decided would be what needed to happen. I called Brett that day and i was like i have crazy news to tell you. So i told him what was going on and he was so excited that his heart was doing better but he feeled the same way i did we really didnt know what way was best there was pros and cons for both . The next day they came in and told me they talked to all the surgeons and doctors and they thought they should try the surgries. Oh my gosh i was floored .. OKay totally surprised and not the road we had been planning for this whole time but i was super excited i feelt like it was the right thing todo. This whole month that we hadnt got a heart i never really felt like" oh anytime will get one". I think i must of kinda new..Trey wasnt asposed to get a heart thats not what the lord had planned for him he had his own plan for this little miracle and we got to watch a true miracle happen right in front of us. Not very often do babies go from having a heart thats not fixable at all to the transplant list the only way to save this baby is a new heart is what we were told , then to we cant explain why.. this doesnt happen.. he has the worst CHD you can have and usually  the heart gets worse .. it never gets better. But Treys did for some reasons it stopped leaking as bad.Never lose hope thats what a friend told me when i called her the night i found out about Trey i said Kristy they told me he wont live his hearts just way to bad. They gave him a 10% chance. She said Alena Dont you give up hope , until you are sitting there and you know as a mom he's not going to make it. She said dont listen to anyone. Best advice ever from that point i told my self you fight for this baby no matter what it takes. When i would get scared or after every doctor appt when we would get worse news and worse news i would call her and she kept me in check, she would tell me i was strong and i could do this and Trey was strong and a fighter. I couldnt of asked for a better friend to get me through the hardest time in my life. :)    Anyways ;) So then i called Brett to tell him the news he was so excited he said your kidding me thats awsome. It was really hard for me to meet other moms and dads and watch there kids go through surgery and then recovery and then move to the 3rd floor and go home and even after Treys surgey and recovery we were stuck there we had no plan to go home anytime they said baby hearts are really hard to get most babies die waiting for a heart, but it could be the first day he's listed or 6 months to a year if he lasts that long so i got really sad when i seen other people leave i wished it could be use or we at least new when it would be are turn. Treys surgeon Dr.Kaza said since he didnt do the normal  Norwood surgery  for his first surgery that he was going to  combine the the two surgies he said he had never done that before and it would be a huge surgery so he wanted him as big as he could get. We couldnt go home becasue Trey was still on PGE which was still in a picc line that went through his groin into his heart carrying the med PGE to keep him a live. Trey was on the PGE longer then they had ever had  ababy  on it there,.So he would have to stay in the CICU until he got his surgery. Which we had room 12 and it was surrouned by glass we had made it our own and the nurses got to wher they new Trey really well and i felt very comfotable being there even though it was th ICU..

   So we were there to grow this baby for surgery was our next road we were going down. They didnt give  us a date or anything just sadi we would wait till the Dr. thought he was ready.One day i came in and Trey had this aweful probe burn on his hand it was so sad i hadnt when things like that would happen becasue i fellt like those were things that the nurses could of prevented and i hated him hurting :( It was super sad. I took a pic and sent it to Brett he was not so happy with the nurses. But i guess things like that happen.

I had some nurses that i really wanted to beat with a stick,, in  the nicest way :)  But really most of them were just awesome. It was hard for me to have someone else taking care of my baby thats why i was only gone for about 4 hours everynight other than that i was always in there, i had one nurse tell me she was bathing Trey becasue that was her job and she didnt want me doing anything i needed to go to a movie or something. I know she was tryingto be kind in her own way but it did not make me happy. If i was home i would not be going to a movie i would be with my newborn baby in my sweats .. I told her i knew it was her job but that is my baby.  Its hard feeling like its your baby when you have so many people telling you what to do with your baby. Trey went through a throw up little stage for a couple weeks after he got done eating he would throw up and then desat. It was lovely. I realized when he was eating he would swallow air and then swallow a air bubble and i could hear if do it and then he throw up so one day he had done that and my nurse helped me clean it all up and then was standing my the computer  typing something in and then i hear her say i need iv fluids for Trey Hardy. I stopped her and sadi why does he need Iv fluids , becasue he just threw up. This crazy nurse was going to get an IV going and do fluids becasue he had thrown up once that day. I said no he is fine. Normal babies throw up,, Goodness, She wasnt very happy with me but i didnt care i wasnt going to let her do that.
When Trey was a little over a month he had a little fever and the doctor sadi she wanted to do a spinal to get fluid out and test to see if he had an infection and i just didnt feel right about it . The fever wasnt very high and she said it would jusy help them decide how long to do antibotics. I couldnt put Trey through a spinal it made me feel like throwing up everytime i thought about it. They couldnt do it without my signuture so the docotr kept coming in and talking to me about it telling me how important it was and i finally said can i have tonight to think about it and let ya know tomorrow she said yes but im going to plan on you telling me yes tomorrow, i told her i really would think about it tonight. Well the next day i had decided that i was not going to let them do it and i went to Treys room the nurse said he hadnt had a fever all night  so i told her that i was going to tell the doc no i didnt want a spinal and she came in later that day never said a word about it and they never did a spinal. I was glad i put my foot down becasue he didnt need to even have one, She never said another word about it sometimes i think they jump before they give it a little time.

The nurse tried to flush the picc line and water came out of it and they realized it was cracked so they had to send Trey down to get another Picc line in his other leg.This poor baby got poked SO much he had bruises everywhere and the picc lines they sticthed into hs legs . so he had scars and stitches from  them.  When they took him to get the new picc line they found a big blood clott so the doctors decided Trey needed to be on Lovenox shots twice a day. Poor little dude now throw that on top of it all.. every morning and night he got a shot plus all the meds he was on.
  
  The Trailer that we bought for me to live in was working out so nice. Since i was right in the parking lot. I could nurse around the clock so i was going up there at all hours and i would not have been able to do that living at ronald mcdonalds. I used the tailer to sleep  and it was nice to have when the kids came. It has bunk beds and the boys thought that was the coolest. My sister came up and stayed with me and brought the boys for swimming lessons for 2 weeks it was so fun seeing them everyday for 2 weeks thats the longest i had with them at one time in the 5 months i was gone. There is nothing worse then having your kids split up and having to chose between them . I missed them so much everyday an would just ache to have my family undr one roof , sometimes you take things like that for granted.   When i had really bad days the tralier gave me a place to fall apart , it really was my saving grace..


    The doctors finally gave us a month they were going to try and do the surgery if he was still gaining good, so August was it . I was super scared but it was the first time since we had been in PCMC that i feelt like we really might really  be able to take this sweet baby home if this next surgery went good, they told me if it went good we could be home anywhere from 2 weeks to a month after the surgery. That was cool to hear.. When your in there waiting on a heart transplant you have no clue how long youll be there that was really hard for me . So it was cool to finally see in the far distance that amybe we were getting out of here .. 

   August came and they set the date for August 12th. So a week before they had to take him to the cath lab to check pressures and look at everything . Trey had to go on the ventilater for that and he has a hard time with the caths because his heart has stopped before during one, and he has a hard timw coming off the Vent he decides he doesnt need to breath and lets the vent do ALL of it for him so when they brought him back they said that night he would be off of it but they didnt get him off until that next moring and they had to postition him on his belly so his tongue didnt fall back in his throat . I would get so bummed when they would say ya he should be off the vent by this time and then hours and hours later we were still waiting , it gets scarey. 

   It took him a couple days to recover from that and then he was back to his super smiley self agian he was a giggler and loved all the nurses stopping bye to talk to him he was getting pretty spolied i dont think he stayed in his bed very long during the day , if i went to grab lunch or do laundry. I would come back and someone would be holding him. We went on 3 stroller rides the whole time we were there and they were right around the CICU .A week before Trey had his surgery we got family pics done outside in the garden, that was the first time he had EVER been outside and he was almost 3 months old. Those pics i will always cherish im so glad we did them i love them...

   Trey was schduled for a thursday for surgery and every morning the docs make there rounds.