Prayer Vigil

Hi everyone, This is Erin's friend Sarah.

I am setting up a 48 hour prayer vigil for Raygen during and after her surgery.
Leave a comment here or on FB or email me at pskgallagher@yahoo.com

and let me know the date and time you would like to pray for Raygen during her surgery.

Let's pray October 26 1:00 am until October 28th 11pm, so for 48 hours.

Pick any hour you would like to pray! and let me know, I will put you down!

The goal is for someone to be praying for Raygen for a full 48 hours before and after her surgery. So if we each take one hour Raygen will be covered in prayer, and you can pray for more than one hour if you like too! :-)

Surgery Date

We have a date. October 19th we will go to Children's for Raygen's pre-op appointment and then October 26th will be her surgery. I'm so scared. I have already ordered the girl's costumes and we will do a mini Halloween at home before surgery. I know how much it means to Zoie for her and Raygen to be Jesse's together. This will also be difficult for Zoie because most likely we will still be in the hospital for her 8th birthday which is the first week of November. We may have to do a mini Halloween/birthday party. I'm so scared. Please pray Raygen continues to stay healthy and gain weight so she can go into surgery as healthy as possible. Please pray for Zoie as well because this time it will be so much harder on her. Hopefully we will be home, happy, and healthy by Thanksgiving.

Sister Time

I had to post this video. I love seeing my girls together.

Waiting....

I hate waiting. I have absolutely no patience what so ever but in this case I could wait forever. I should get the phone call today or tomorrow with the date for Raygen's next surgery. I want the date to prepare but I also don't want the date because I am so scared. I know everyone says the Glenn is much easier then the Norwood but this is Raygen's Glenn and as you all know Raygen's journey so far has been anything but easy. I know that after the surgery Raygen will be more stable heart wise and we can put all our focus on getting rid of the trach which is exciting but being in the hospital and seeing her in so much pain scares me. I hate seeing her in pain and not being able to do anything about it. My emotions lately are all over the place ranging from "lets just get it done" to "No way I'm not ready." I know we have no choice without the surgery Raygen could not survive long, she is already out growing her shunt and you can see it in her Oxygen Sats. I know when we get the the call for surgery we will have to load up our beautiful baby and head to the hospital. We will have to trust the doctors, surgeons, and nurses to work another miracle on our Raygen. We have been trying to spend a lot of family time together lately. This weekend it was just me and the girls and it was wonderful. I love seeing Zoie and Raygen together. Zoie and Raygen love each other so much you can see it in the way they look at each other. Zoie is such a good helper she loves helping with Raygen. Zoie has decided that her and Raygen would be Jesse this year from Toy Story for Halloween. Raygen loves Toy Story and watches it all the time. I will have the cutest "Jesse's" in town. Raygen has a cardio doc appointment on Thursday and Zoie will also be getting her flu shot, please pray that it all goes well. Also please pray for Raygen's heart friends Emma who is healing from her Glenn, Aiden who has his heart cath on Friday and so many more. Also, please pray for my neice Taylor who had a bad bicycle crash on Friday and broke and fractured her jaw and had oral surgery yesterday and has to have her jaw wired shut for 6 weeks. God has blessed us in so many ways and he is an awesome God. God is good, always.

Happy 6 Month Birthday Raygen

6 Months

How time flies when your having fun. Raygen I can't believe you are 6 months old today. You have been such a blessing in our lives and your strength and courage amazes me every single day. You have been through so much and have so much more to go through but you still laugh and smile and play all the way through it. I can't imagine our lives without you in it. You have made our family complete. I am waiting today for a phone call for the date of your next surgery and I am so scared. I am not ready to watch you go through another surgery, more pain, and all the ups and downs but I have no choice and if I could do it all for you I hope you know I would. I wish with all my heart that I could prevent you from feeling anymore pain or discomfort. When I look back at your birth you were only hours old when you got your first IV and not long after you had your first PIC line so you felt pain much too early on. Someday you will be done with surgery, done with hospitals for awhile and we can show you a life filled with trips to the beach, zoo, mountains, anywhere you want to go. I love you Raygen more than you can possibly know or words can describe and you are the most amazing baby and I am lucky enough to be your mom. I thank God everyday for you and I pray for another one. You and your sister mean the world to your father and I. I know we are headed back to the roller coaster life of the hospital within the next two weeks so I am going to take the time to enjoy you as much as possible today and tomorrow and everyday after. You are going to do awesome with surgery and we will come home happy and healthier then when we left. In 6months you have undergone numerous iv's, blood draws, echo's, ekg's, open heart surgery, trach sugery, g tube, heart cath's, xrays, and so much more. Raygen you are a fighter, a survivor, a miracle, a blessing, a god send, and the piece that make our family complete. We love you so much.
Love,
Mommy

Doc Update

Today was filled with good and disappointing news. The good news first. Raygen's G tube is looking good. No signs of infection and for being 6 days old the docs said it looks great. He said that it would be sore for a couple months, can you believe a couple months, let just say no one told us that before we said "yes" to the g tube. I just hope in the end it was worth it. I know at some point the NG tube was going to cause problems with Raygen's sinus and other issues but still knowing that her tummy could hurt for a couple months makes me wonder if we made the right decision. We have to be extra careful moving and holding her and she can't take a bath for a couple months as well so we will have to do lots of sponge baths. I really wish we would have asked more questions. But I can't change it now so I just have to hope we did the right thing. The disappointing news is that we saw the trake or Otto doc and he said that there was no way Raygen would be able to get rid of the trake prior to the Glenn. I cried. The Otto doc said that he sees her having the trake a total of a year so at least 6 more months before we try to take it out. The trake makes the Glenn a little more difficult. I did talk to Raygen's cardio doc and they presented her on Wednesday so I should be getting a call tomorrow or next week with the date for her surgery. Raygen has been supper fussy lately and she has also lost some weight over the past few days so please pray for her. We need her at her best going into the Glenn. I'm heart sick but so very grateful tonight. Although we are going to have some struggles we have an awesome God who has brought Raygen this far and will continue to be with her and us as we head into the next stage. I am a blessed woman with a great husband and the two best daughters any one could hope for and I do feel a sense of peace knowing that God is with us and will continue to be, always.

Busy...

Raygen has been doing really well the last few days with her passe or speak valve on her trake. It's purple too so she is styling. We have started to hear little squeaks and other noises but you still have to know what you are listening for. I think she is starting to breathe more out of her mouth and nose but since there is still a small hole in the speak valve she does most of her breathing through the trake still. This is one of the things we will discuss Thursday with the Otto doc. Raygen is a little fussy today so I haven't tried the valve too much. When she coughs or sneezes we have to pull the valve off supper fast otherwise she throws up. I think the more Raygen wears it and gets used to the new sensations the louder she will get. I can't wait. I am a little nervous today since she is fussy and not so happy. I just don't want her to get another cold. I just pray with all my heart that she stays healthy and happy so she can go into the Glenn strong and come out even stronger. Zoie also started soccer and last Friday was her first game. So heart breaking that we miss out on things with Zoie but I am very blessed to have awesome parents and in-laws that help make Zoie feel special when we have to be with Raygen. I know this time next year Randy, Raygen, and myself will all be going to Zoie's activities as a family of 4 and I just look forward to those days. All of this is worth it, Raygen is worth it, she is worth everything.

Were Home

We got home last night around 8pm. So glad to be home. A little stressful leaving Seattle so late and not really knowing anything about the G tube, but I can figure it out. Raygen is so happy to be home. Today was my first day home without a nurse. It was just Raygen and myself. My nursing agency is running low, so if your a nurse and need a job let me know. It went well. Raygen and I did awesome. It's just a little nerve racking when I need to get meds or go potty. I just have to pick the right time when Raygen is doing good and run to the bathroom real fast, lol. I also try not to talk on the phone just incase so if I don't answer I will call you back when Randy gets home :) She is such a good baby and she is so strong she just amazes me everyday. Zoie should be home and I'm so excited. I missed her sooooo much and I can't wait till give her a big hug. So we go see the Otto doc this Thursday and will talk more about getting rid of the trake and Raygen will have an Echo next week on Thursday just for a check up. Dr. Rubio should present Raygen to the surgeons on next Monday so I may have a surgery date next week. So so so scary. Raygen is so strong. She has made it through so much and I know she will do great during and after the Glenn. Please pray for her to just continue to get big and stay healthy till the Glenn. Thank you to everyone for all your love, prayers, and support while we were at Childrens. God Bless. I also put up a few pics of our journey this time. I love the set up we did for Raygen in her hospital bed, we had to have Sesame Street :0) It worked wonderful. I still am not used to seeing her pretty face with no tape, I love it.

Home today? Maybe....

Raygen has had a few tough days this week but she is such a fighter and such a strong willed little girl. She is doing wonderful today. She is smiling and playing and she is starting to look like her new normal self, without any tape or tube on her face. The g tube is still up in the air as far as "was it worth it?" but I love seeing that beautiful face with no tape on it. They say we might get to come home today if they can get all the follow appointments worked out and the paperwork all done. So it could be tomorrow. For the valve and trake stuff it is all still up in the air. We have tried the speak valve and she does fine, not too much noise because they have put a small hole in it to help her breathe and not send her into a panic. We need to see the otto doc and maybe discuss downsizing her trake so she will have a bigger airway so that will be at our follow up appointment. Who knows, we may get to have the Glenn without the trake or may just have to worry about the trake after, I will leave that up to the doctors and surgeons. I can't believe we will be back in about a month for the glenn. It was so hard to see Raygen in so much pain and discomfort the last few days I am not ready for major open heart surgery. I'm not ready to see her chest cut open and drain tubes and ventilators but I have no choice, Raygen has no choice. As we get to come home I think of baby Emma who is going for her Glenn tomorrow and we are praying for her. I know how hard it is going to be to bring Raygen back for the Glenn so my heart is aching for them. I know we have an amazing God and we also have amazing children. I always think if Raygen can go through all of this and at the end of the day laugh and smile then so can I. Raygen keeps me strong, my husband keeps me sane, Zoie and my family keeps me grounded, and my God fills me with hope. What else do you need?

G Tube

We just got word that Raygen did well during her G tube procedure. She wont be back to the room for another hour so I wont feel completely good about things till I see her. She had a so so night. Ever since the cath her o2 is running lower than it did at home, which concerns me, but we will have to wait and see what the doctors think. The good part is that during the cath her lung pressure was 95% which is awesome! So the lower o2 could mean she is just ready for her glenn sooner than later but the fact that it is lower and staying lower so fast it what concerns me. I am going to try not to over think this and just leave it up to the doctors. So hopefully today we can remove the feeding tube from her nose and tomorrow sometime we can start her feeds using her new g tube. So no more pulling the tube out and tape on her face, which is so wonderful. I am totally not ready for the Glenn. We did try the speak valve for just a moment and Raygen did fine. Randy let me sleep through it so I don't have too many details but they only tried it for about 10 mins. We will try it again later today maybe and I will let you know how it goes with more details. I have been a mess during the last day I was not expecting Raygen to have such a hard time recovering from the Cath and I don't know what to expect from the g tube so the Glenn just terrifies me. We do have a wonderful God. He has blessed us the last two days with wonderful news that we can move forward with surgery and we don't need a transplant and I can feel him all around us here. Thank you all for all your love, prayers and support. I hope for us to come home on Monday and then I will post some pics. I will continue to update the blog with any news.

Cath Update

Raygen's cath looked great. The doctor said he couldn't ask for better results. So Dr. Rubio is thinking Glenn in about a month. But they had no luck getting an iv on Raygen. So far I have counted about 10 pokes that I could find. She has a central line right now so they have access for her G tube placement tomorrow. Her right leg turned purple during the cath so they are watching it closely and starting her on heparin (blood thinner) and are keeping an eye on it. She is still sleeping and I don't want to be gone long so i will try to post more later. Thank you so much for all your prayers and please keep them coming.

Were Off

Were packing up the car now and headed to Childrens. Please pray for Raygen. I will do my best to keep you all posted.

Cath Day Tomorrow

So I just got the phone call from Children's. We check in tomorrow at 8:15am so we will be leaving our house around 5:30am. I'm so scared. So much depends on tomorrow results that I'm freaking out while I'm typing this. I know I will cry all day so if you talk to me just be prepared :) So I have the plan on when we turn her feeds off, the medicine she can and can not have and I even got to discuss the plan with Dr. Rubio. After the Cath he will come and have a long conversation with us on what the test show. Based off her Cath will determine when the Glenn will be, could happen as early as two weeks from tomorrow. We will be admitted to the hospital after the cath so later tomorrow after she has fully awaken from the Cath, ENT will come try the passe mere valve on Raygen's trake. Based on how she does will the trial and the cath results will determine how fast we can get rid of the trake. Dr. Rubio also said he would present Raygen to the Cardio Surgery team on Friday and they will also discuss based on the Cath results when and how to handle the trake. Sometime Friday she will have her G tube. The G tube seems to be the lesser of all the things happening in the next few days but just as important and just as scary because it is another procedure for Raygen. But since she has discovered how to pull her NG tube out it is a necessary one along with being a medically one.
Please Pray:

Raygen does well with her Cath procedure and the results are good.

Raygen does well with her Trake Trial.

Raygen does well with the G Tube.

Raygen has no issues with being sedated or ventilated.

For the doctors doing the procedures. That they are rested and make the right decisions for Raygen.

For Zoie that she is okay while we are away.

Thank you to everyone for your prayers, love, and support. I will keep you posted as much as I can.

I did it AGAIN......

Okay, Raygen, Seriously. Raygen decided to make our lazy Tuesday morning exciting. Raygen pulled out her feeding tube AGAIN. She made it a week this time, lol!! I love the pictures of her without her tube she looks so good without any tape on her face. This is what she will look like after Friday. I must say the G tube is sounding better and better. I think Raygen is ready for it too, lol! I really think the NG tube is irritating her nose. She is constantly rubbing it and I feel so bad I know it has to tickle or even be a little painful sometimes especially with a roll of tape on her face. So I should be getting a call from the doctors today with our final instructions for Raygen's Cath and G tube. We will have to turn off her feeds sometime tomorrow evening and I know we will have to hold some meds. I have a huge knot in my stomach. My goal is to start packing today so I don't forget anything that Raygen or I may need in the hospital but I just can't seem to get myself motivated. I know in my heart we are going to get awesome news and that everything will be okay but I'm going to be a mess till I hear it from the doctor.

Busy Monday

Therapy was good but Sorry Suzy that Raygen was a little on the crabby side. I'm glad we had a busy day today it takes my mind off of Thursday. Great Grandma Judy came today with Grandma Lori and we had a nice visit. We played with new Elmo toys and her balloon again. I had to post the video, she is so funny. Raygen has also discovered her tongue the last couple of days and sticks it out, it is so stinking cute.

Playful Weekend

We played with toys, balloons, blankets, toes and more this weekend, lol and took a lot of good naps. The Cath is on Thursday for sure. We check in Thursday morning and the procedure will take place in the afternoon. I'm so nervous and so scared. It is all that is going through my mind this weekend. I'm excited for the valve trial on her trake and for the G tube. It will be so nice to see my baby girl without anything on her face, but I'm nervous for that too. Not sure how long we will be at the hospital this time, I guess it depends on how things go. I am thinking we will be there at least till the 19th but I wouldn't mind going home sooner :0) Please, please pray for Raygen this week. Please pray for Zoie, thank God for grandparents. We will miss her first soccer game this Friday because we will be at the hospital and I feel so bad for her. I hate missing Zoie's activities. I don't want her to feel like she is any less important to us then Raygen. I am glad that both set of grandparents will go to cheer her on and we will have it recorded so we can watch it with her when we get home. I am just going to enjoy my time at home for the next few days with my family as much as possible. I am not going to let my fear ruin any time with Raygen. I know in my heart we are going to get the news we have all been praying for. Raygen will qualify for the Glenn and she is ready to loose the trake. Thank you to everyone for all your prayers and support. Thank you to Grandma Lori and Grandma Dorothy for being my helpers this weekend. I will keep you posted. God Bless.