New Toy

I had to post this video. Raygen has discovered her hands are used for more then just playing with toys, lol!! She is watching Winnie the Pooh and having a great time. I love these moments.

Waiting and 1st day of school

No news yet on any appointments. I made a few phone calls so hopefully today we will get some dates. Dates for the valve trial and Cath and G tube date. I hate waiting. So much depends on the results of the Cath and its so hard waiting. I have mixed feelings. I'm so scared for the Cath because so much depends on the results and I'm so ready for the Cath so I know what direction we are heading. I just pray so hard that the results are good. That Raygen qualifies for the Glenn and that we have a couple months before surgery so we can work on getting the trach out. I know when it comes down to it we just have to depend on the doctors to make the final decision on our plan but the not knowing keeps me up at night. I made a promise to myself when I had Raygen that I would not live everyday fearing loosing her and it's hard to keep that promise especially when so much is coming up. Raygen is so special and such a good baby I am truly blessed and thats what I need to focus on and realize that it's all in God's hands and trust in him. I also had to post a picture of Zoie on the first day of Second grade. She has a wonderful teacher, Mrs Disney. Thank you Mrs Disney for making Zoie's first day "Awesome!" as Zoie put it.

OT Appt

So today's OT appointment went good. They actually did a scope and saw that Raygen's right vocal cords are working "normal" which is so amazing and I'm so excited. Her left cords are not working so they are thinking nerve damage. They may start to work again in a year or so. The good news is that you don't need both working to loose the trach :0) So the plan is.... the doctor is going to share the results to the Cardio doc and they would like us to go back to Children's this week and try a speak valve and have Raygen monitored during the test to make sure she handles it okay. The speak valve will allow Raygen to breathe air in through her trake and out through her mouth and nose, this is the first step to getting rid of the trake. I think a lot depends on how she handles the speak valve on where we go from here but thank you God that her right cords are working. What a blessing it would be to loose the trake before her next heart surgery. To hear her cry or babble or laugh, I dream for those moments. So now we wait.....we wait to hear when they want to try the valve, when they want to do the heart cath, and when they want to do the glenn. I'm going to enjoy the waiting although I am really excited to see how Raygen does with the valve and I can't wait to see her face when she hears herself cry. Please pray that Raygen handles the speak valve okay and that we can get rid of the trake before the glenn and please pray that Zoie's first day of second grade "rocks".

Lazy Weekend

We had a good weekend. We played and took naps and learned to suck our thumb, lol! I love the pic of her sucking on her hand, she surprised herself the first time she did it. We have such a big week coming up. Monday, our ENT appointment. Tuesday, is Zoie's first day at school. Second grade, here she comes. Hopefully this week we will also get a call from Children's to schedule her Cath and her G tube. Raygen is so awesome. She is so much fun. She is now at the stage where she fights going to sleep. It's so funny to watch her rub her eyes and yawn and then still try to smile all at the same time. She is such a good baby. She is fighting sleep right now as I type. Please pray that our appointment goes well tomorrow. That traffic isn't too bad and that we get some needed answers on her vocal cords and trach. I am preparing myself for it to be one of those appointments to make an appointment kinda visit just in case. Thank you to everyone who is praying for us and for all your well wishes and warm thoughts. We couldn't do it without you.

Hot Days

The last two days have been so hot, hot for Ony thats for sure. Good thing we have an air conditioner but I know Raygen still feels the heat. She hates blankets even when its cool outside so with it being warm plus having to wear her warm mist collar she is supper sweaty. She had therapy today and did so awesome sitting up and looking around. She is getting so big and it's so exciting to see her meet all the baby milestones. No call from Children's today so maybe I will know next week when her cath will be. We will be heading to Children's again on Monday to see the ENT docs so I'm really excited for that appointment. I really want to know how her vocal cords are. We have a lazy weekend planned just resting up for our big trip on Monday.

Cardio Doc Appt

So the appointment went great today. It was pretty much "put your eyes on her" kinda visit. A follow up since we have been home from the hospital. Raygen did so good. She was so happy and plus she looked so dang cute in this dress and her new hair-do. So Dr. Park said that we need to wait at least two weeks to make sure Raygen is fully healed from her cold to move forward with the Cath. Dr. Park is going to call Dr. Rubio at Childrens and between the two of them they will pick the date for the cath. It should be within the next 3 weeks. Hopefully we will be able to get her G tube placed at the same time. The Cath is a huge deal. It will tell us for sure if Raygen will be able to have the Glenn. The cath reads the pressure in her lungs and heart and by this test will be able to tell us if we move forward to the Glenn or move to the transplant list. Please pray that her numbers and pressures are good and she can have the Glenn. Also the trach puts Raygen in a more tricky position. Her stoma is so close to the incision line for her heart surgery that puts her at a higher risk. We go see the ENT doc on Monday so hopefully they will have some answers on her trach and paralyzed vocal cords. It would be so nice to have the second surgery and come home with no trach but I'm trying not to get my hopes up. I will take Raygen any way I can get her, trach or no trach as long as her heart cath and surgery go well I don't care about the rest. I'll keep you posted and thank you to everyone for all your prayers and support. The next month so much is going to happen and I'm starting to panic that it is all happening way too fast for me. It feels like I just brought my baby girl home and now were planning our next trip back to the hospital and I'm so scared. I know the Lord has blessed us so far and I pray with all my heart he continues to do so.

Happy

So happy watching Winnie the Pooh.

Happy 5 Month Birthday

What a wonderful blessing you have been in my life Raygen. I knew in my heart that I was meant to a mom to two babies and how blessed and lucky that I got the two perfect little girls. I can not tell you how excited I was to find out I was pregnant with you and what a shock it was to learn of your heart defect but I knew God had a plan for you and I. I know you have been through so much and you have so much more to go through but you are so strong and happy and such a miracle that has touched so many lives in such a short amount of time. God has truly blessed me. Raygen you have such a wonderful smile and those eyes take my breathe away, you have truly made our family complete. I know deep down in my soul that you will fly through your upcoming surgeries with no problems and then hopefully you will get a few years off of hospitals. Raygen you have taught me to live for today. To enjoy you today and not worry about tomorrow, to tell everyone that I love how much I love them everyday, to be a better mom, wife, sister, daughter, and friend. I can not tell you how much I love you Raygen, there are no words for it. I just thank God everyday for you and Zoie and I pray for another one. I know when you are five years old we will look back on these days and tell you how strong you were and what a survivor you are and you will think were crazy because you will just have a small little scar on your chest to show the journey you have walked.

Sister Monday

Today was a good day. Raygen had some good needed sister time. Zoie rocked her to sleep today and it was so cute. When were in the hospital with Raygen I dream of these moments with my two girls together, bonding like sisters should. I love that Zoie is really starting to be more comfortable with Raygen and likes to help out. I can't believe Zoie is starting school next week and then we will be off to the hospital and moments like today might be few and far between for awhile. I hope and pray not a long while. So we go see the Cardio doc on Wednesday and should get an estimated date for her cath and we go see the ENT docs on Monday. I just pray that her vocal cords are healed and we can loose the trach and I can hear my baby cry or make noise. Such a good day, crazy to think that tomorrow our baby is 5 months old and this time last week we were headed to Children's. Thank you Lord for an awesome day and letting us all be home together as a family.

Home Sweet Home

We finally made it home late Friday night. Traffic wasn't that great plus with that long of a trip we do have to stop and do a diaper change and take a break. Raygen gets so hot when she is in her car seat too long so she needs breaks. Yesterday we just caught up on some needed R&R at home. I know Raygen knows she is home. I think she enjoyed being back in her bed and watching her Sesame street, lol! We have started a bad thing with the tv but whatever makes Raygen happy we do. She had a really good night last night. I can see that she is starting to feel better each day which is a relief. I'm even more panic now after a cold then before, but I guess now we know what signs to watch for. For a cold that you or I wouldn't have noticed if we had it, sent Raygen to the hospital for 3 nights. So scary. I know that each day she will start to feel a little better and get back to herself but I know were only a few weeks from going back to the hospital. It will be strange to take Raygen to Children's instead of being taken there in an ambulance. So the plan is...... to see her regular cardio doc this week for a check up and then Dr Park (awesome cardio doc) and Dr Rubio (Rubio is the cath doc @ childrens and an awesome cardio doc) will decide and schedule Raygen's heart cath and G tube placement. Hopefully both procedures will be done in one visit and under one sedation. Then based on the Cath results will determine when we go forward with the Glenn, but they are thinking October most likely. I also have to schedule an ENT appointment within the next two weeks as well to have Raygen's vocal cords checked to see if they healed and if there is any possibility we can get rid of the trach soon. I think they have healed at least a little we do hear a cry once in awhile. So many things happening within the next few weeks. Zoie is also starting 2nd grade, she is getting so big so fast. Thank you for all your prayers and support we couldn't do it without them. Please continue to pray for Raygen she has so much coming up so fast she needs to be as strong and as big as possible and please pray for Zoie that the sencond grade is good for her and that she knows she is loved and important.

Going Home

Just wanted to let everyone know were going home today. We should be discharged around 4pm. I hope traffic isn't too bad but at this point I don't care I'm so ready to take my baby home. I will post a pic and longer update later tonight. HOME WE COME!!! Thank you for all your prayers, God listened and is still listening. Raygen truly is our little blessing and miracle.

Update.....

So wonderful news all Raygen's test are negative. She still isn't her happy self yet but I think she is getting there. They still think that she has a small cold that she is working through. She has been on room air since 2am and she is doing awesome so far. Her oxygen is staying in "her normal range" of 75 to 80. The cardio docs also agreed that she no longer needs to have two shots of day for her blood clots. The ultrasound that she had done on Monday showed that the two in her right leg are gone and the one in her next may be gone but since she has been on a blood thinner for 14 weeks they agree that it is safer to have her off of it. This will make home so much better I am always so worried about any bumps to her being on blood thinner because the littlest bump could make her bleed inside and we wouldn't know. Plus we don't have to give her shots :) Her GI test was undetermined since she spit up early on in the test they were not able to get any results, which is okay. We have decided to put her feeding issues on hold till after her glenn. The docs plans are now to watch her today and over night with a possibly going home tomorrow. We will probably come back to Children's in two weeks for her heart cath and possible G tube placement (this would replace the feeding tube in her nose & go directly in her in stomach.) The G tube is probably the best route for Raygen because we know even if the trach comes out soon she probably will need some support till she learns to feed on her own. They are thinking the Glenn in late September early October. The good news is before the Glenn they will do a vocal cord scope and see if it will be possible for her to breathe on her own without the trach so we can possibly loose the trach before the glenn, which would be a huge blessing and a huge plus for Raygen. This would open so many doors for her if her vocal cords were working again. The glenn is coming so fast and it's crazy to think we will be back here again in two weeks. Please continue to pray for Raygen, that she continues to heal from her cold and that she doesn't need any oxygen support. I just want our happy, smiling, baby back and home. Also please pray for big sister Zoie. This is all so hard on her and she is always so worried about Raygen. I miss her so much. Thank you all for your prayers and support. I will keep you posted. By the way we downloaded Sesame Street on Randy's I pod and that is what she is watching in the picture, lol!

Update So Far.....

So yesterday was so scary. Raygen had some breathing issues at home so we decided to take her to see her pediatrician so she could take a look at her. Dr Polley agreed that she didn't look right and agreed that she looked like she didn't feel good. Dr Polley decided it would be better to admit her to the hospital just in case. So Raygen took her second ambulance trip to Seattle Childrens (first was right after birth) and we were admitted last night. They have run blood test and trach cultures and so far everything is looking negative which is awesome. Some of her numbers are a little elevated so they all agree that she probably has a cold or virus. She was off her feeds last night and they decided to restart them today. She still looks very pale and uncomfortable and she just isn't her happy normal self. She is on half a liter of oxygen to keep her stats up and she doesn't have to be on it all the time but she is having periods where she needs it. We don't know how long we will be here but for sure 48 hours. There is no way I'm taking her home with how she looks right now. Please pray that she heals from her cold and tolerates her feeds being restarted. She needs to heal quickly so we can do her heart cath and get ready for the glenn. Please continue to pray for Raygen, she needs to heal and get better so we can take her home and she can continue to grow. I really feel the next 24 to 48hrs is sooo important. I just pray she continues to improve and that she is able to get off the oxygen. Thank you all for your prayers and thoughts and thank you Sarah for continuing to update the blog. I will do my best to keep you all posted. God Bless!

Respiratory Infection

Erin said looks like Raygen may have respiratory infection.

Please pray for Raygen

Erin texted me that Raygen is being taken by ambulance to children's hospital. Please pray. I am assuming it has to do with oxygen levels and her heart not working well!

Scary Nights and Long Days

So here's the update so far....
Last night Raygen had a hard time keeping her oxygen stats above 75% so after twenty minutes I called our cardio doc and he thought since we adjusted the feed on Saturday to pause it for an hour to see if she improved. She didn't. So we had to give her oxygen, it's the first time I can say I noticed her being "blue" or "dusky" her lips especially. The oxygen did help and when we headed to the doc this morning she didn't need any on the drive up. We stopped by the cardio doc for a few minutes before Raygen's GI test so he could get a peak at her. He decided that later today he wanted an echo and an ekg. Raygen did well through her gastric emptying study and I was quickly able to replace the feeding tube. She did well with her blood draw and it took only one poke. She then had an echo and ekg, which as far as we know looked good. Then lastly Raygen had an ultrasound of her arms and legs to check for blood clots (last we knew she had 3, 2 in her right leg and 1 in her right arm. She gets two shots a day for this.) We have no results as of now of her blood work, GI test, and ultrasound.
Raygen's cardio doc thinks that she is just getting ready for her Glenn. Dr. Park is thinking to schedule her heart cath in the next two weeks with the Glenn happening maybe more like October then November. I'm so nervous. The heart cath means another procedure, iv's, and maybe a night or two in the hospital.
We should know all the results of all her test hopefully sometime tomorrow and have a date for her heart cath.
Since we left home today at 6am and just got home around 5pm and going on 3 hours of so so sleep I'm so exhausted, but watching my beautiful baby sleeping at home is what I focus on. She is on oxygen as we speak but we will see if she needs it when she wakes up. I just pray she gets some good needed sleep tonight and continues to grow and get stronger because the bigger she is the better. Thank you everyone for all your prayers and well wishes. I will post as soon as I get some test results tomorrow.

Fair and Home

Zoie got to spend Saturday with Pappa Brad and Grandma Lori at the Elma fair. As you can see she had a very good time. I miss that were not able to take her to things like that right now but its way too risky to take Raygen out, especially to a fair. But Randy and I got to spend a good day at home with Raygen. Were practicing sitting up and holding our head in the pic. She is doing so well. I'm so nervous for tomorrow. Please pray for Raygen tomorrow. Please pray that the gastric emptying study goes smoothly and that I am able to replace her feeding tube quickly. Please pray that she only has to be poked one time for her blood draw. I'm so nervous. I hate taking Raygen to hospitals and I hate test and blood draws. It brings back so many memories and the worst part is I have no choice. I know soon we will have to take our baby back to Children's and go through everything all over again. When your baby is at a hospital it's so hard because you don't get to be their parent, not like at home. You give up a sense of control and it is all so scary. God, please give us strength, trust, and patience and Lord please protect our children. Not only does Raygen go through so much but so does Zoie. It's hard being a big sister to a heart baby and it tears me up to see both my children suffer. I will update on Tuesday with how tomorrow goes and the results to her test. Thank you all for all your support.

Family Pictures

Thank you Michael Duryea for our wonderful family pictures. I love them so much. We had a very good week. Raygen is finally over 14 lbs. It's so exciting to see her grow and see her personality shine through. We have a big day on Monday. We have to be at the hospital very early for Raygen to have a gastric emptying study. The test takes about two hours. The worst part is that we have to take her feeding tube out for the test and replace it after. She gets so worked up over this, but so would I. She also has to have blood work the same day. This is so hard for her. Being a baby is hard but being a heart baby is really hard. She is a very hard poke and last time it took 3 times before we were able to get blood but it has taken up to 8 or more times. I just pray that Monday goes smoothly and that it isn't too hard on Raygen. I pray for a 1 poke blood draw and that I'm able to replace her feeding tube quick and easy.

Rattle Shaking

Moving and Shaking

We had an exciting day yesterday! Raygen is bringing her toys to her mouth which may be a small milestone for most babies but its huge for Raygen. With a trach she doesn't get anything in her mouth so knowing that she understands that it's okay for stuff to go there will help so much when she is able to start eating by mouth. What was even more exciting is that she used her right hand. She has always had good control with her left hand so it's exciting to see her use her right. She might not be a lefty now. Her OT tomorrow is going to be super excited with all the progress she is making. I can't wait till I'm chasing her around the house.

Working out

Thank God for another awesome day. She woke up so happy today. Kicking her arms and legs and huge smiles :0) She is also starting to move her right side like she moves her left. Little milestones means sooo much and it's so exciting to see her start to play and shake rattles and interact with you. I just can't wait for the day where we can hear some sound from our little girl. A cry, a laugh, baby talk, anything. The tube that you see in the picture is just a mist collar. Since Raygen has a trake the warm air mist collar does what our nose dose. It helps moisturize the air and to keep her from drying out. She wears this as much as possible but it does drive her crazy so we do give her breaks.

Sleeping & Smiling

I love when Raygen finds her happy sleep. I love to see those big open mouth smiles. I just wonder what she is dreaming about. It makes me thankful that she has happy dreams.

Big Bird Arrived

Thank you Grandma Lori for my new favorite toy :) also a big thank you to Grandma Dorothy for our cute duck shirts. I hope this isn't the only time I can get her and Zoie in matching shirts but I'm thinking it wont happen often if Zoie has her way. We had a good day. We had a good weight gain and a couple good naps. I called the doctor to double check on some lumps she has on her legs from her shots and they said it was normal and to just keep an eye on them. I know her legs bother her. Besides getting normal baby shots in her legs she gets two shots everyday for her blood clots. Never in my life did I think I would be able to give a baby a shot, let alone my baby. Through all this I have learned to do things I never thought possible. I can give shots, change feeding tubes and change a trach. I could be a nurse after all this, but I'm happy just being Raygen's nurse. I just have thank God for a wonderful day and pray for another one.

Lazy Sundays

I love lazy Sundays. We practiced sitting up and watched our favorite show bet you can't guess what that is? :) She loves Zoe and Big Bird. Not too much else happened. We got to spend the day with Grandma Dorothy and Pappa Ray, Grandma Lori and Aunt Brenda came to visit. Raygen is doing so good. We have no doctor appointments this week which is rare. I guess we are taking this week off to prepare us for three next week. This morning when she woke up we did hear a little cry which gives us hope that her vocal cords are healing and the trach is only temporary. And one more thing that is exciting she is almost 14 pounds. She was 13.85 last night. So exciting!! The bigger she is for the next surgery the better.

Thank You

I just want to say thanks tonight. First to my wonderful friend Sarah who helped me create this blog. Sarah thank you for being a wonderful friend and always being there for me through all the difficult times and coming to the hospital when I needed people the most. To my parents Brad and Lori and Randy's parents Ray and Dorothy and to all of our family and friends and everyone who has prayed for us and for Raygen. It is because of all of you that I am able to rock my baby to sleep and Zoie gets to cuddle with her sister. God has blessed us he has truly worked a miracle on Raygen and I pray he continues to do so. We have such a long road ahead and without all of you it would be so much more difficult. There are so many people that I need to thank that have helped us so much with Zoie, life things, and so much more. So I am sending a big "THANK YOU" and hope you know were sending it with lots of love. I know Raygen has touched so many lives and I know she will continue to do so. I always tell people if they don't believe in Jesus they have not met Raygen. Thank you to all of you who say a prayer for Raygen and may God bless you. May God continue to bless Raygen on her journey. I know he has big ideas for her. Randy and I are truly blessed to be her parents.

Playing

She is getting so big. I love to watch her get excited. She is such a good baby. She loves Big Bird. She gets all excited when she see's him on tv.

Sisters

Thanks Grandma Dorothy for our wondeful T Shirts. It's such a heart happy moment watching my girls get to be sisters. Thank you Jesus. Today was a good day. Raygen did awesome. She is napping now I think her sister wore her out.

Home

Wow, how a month flies when your home. After spending 3 months in the hospital it has been crazy adjusting to our "new normal." We have nursing care which helps so much especially at night so we can get some sleep. I have a great group of nurses now so it makes the adjusting a little easier. Raygen is doing so good at home. She is growing, playing, and getting to experience life like she should. Since Raygen has a trake and a heart surgery coming up fast she doesn't get to leave our home other then doctor appointments so with the blog I get a chance to show her off and update friends and family that she doesn't get to see. We have taken her outside on a few of our nice days were having but not for long. With the trake it makes all the little things alot more difficult especially since she is so little. Zoie is adjusting well to being a big sister. It is so much fun watching them play together. Randy and I are adjusting too. Its so nice to get to be Raygen's full time mom. When your in the hospital especially for so long you don't get to do all the normal "mom" stuff so its nice to have her home and know she is all mine. The glenn is coming fast and it scares me so I just live for today and enjoy every mintue with my two wonderful girls and praise God on the gifts he has given me.

Raygen is Home!

Raygen is Home!