Doc Update

I love this shirt it says "Booutiful Baby"

We went to Seattle yesterday and met with Dr Rubio (cardiologist) and Dr. Perkins (trach doc) and now Randy and I both know the surgery plan and I took very detailed notes. The plan is the same checking in on November 17th and taking Raygen's trach out and placing her on the ventilator on the 18th. Dr Perkins will then close her stoma either with a couple stitches or fully close it by having to cut some of the skin away and stitch from the inside out. The way he closes her stoma will be based off of what Dr. Cohen (surgeon) feels is best. She will then have her Glenn November 23rd (yes the day before Thanksgiving, this makes us a little nervous too.) With the idea that she will will be taken off the ventilator either that Friday or as late as Monday depending on how Raygen is doing in her recovery process. They plan to take her back to the operating room to take her off the ventilator because the plan is to see if she can breathe on her own before performing another tracheotomy. I just pray with every fibre in my body that she can easily breathe on her own and she will no longer have the trach. If Raygen does need to have the tracheotomy (which I am trying to prepare myself and think that she will just so I'm prepared) this will happen at this time. The healing process from the tracheotomy will be determined on how her stoma was closed. It could be as little as a day in the ICU or it may add another week. I am not concerned if we come home with the trach because I just want to bring her home and we are used to the trach. We know the trach is not a forever thing. Raygen may just have to wait till she is about a year and a little bigger. We will also have to adjust her pain meds and really make sure they do not wean her from any medicine too fast or without pain services permission. We have so much to think about and so much to worry about but I'm trying not too let it ruin the time we have now together as a family. I love the the quote: "God gives us a spirit of faith, not a spirit of fear." I'm trusting our God and giving my fears to him. Surgery is going to come so fast. Please pray for our heart friend Emma who is experiencing some difficulties after her Glenn. Please pray for her family as well.

Raygen has a cardiologist appointment on Thursday for a echo and ekg. Other then that no doctor appointments till surgery. Raygen also did not get her 6 month vaccines. Dr. Rubio said to wait so YEAH no shots for Raygen. Thank you everyone for all your love and support. Here is to a lazy weekend at home and I will try to post some pics.

Family Time

This was Friday but I had to post it. She is so cute sitting up. She looks so chunky, ha! Which is what we need. I love how she is watching Elmo. She refused to look at me.
I got my new planner today from erincondren.com. I love love love it. Our family picture is on the back. I love making list, making schedules, & writing everything down and this is so perfect. You have to check them out online.

She is so tired in this picture and now she is getting to that age where she fights going to sleep. So cute.

We went for a family car ride on Sunday. So much fun to get out of the house. I sat in the back with Raygen and I was so car sick but I wanted to give Randy a break and let him enjoy a nice drive. I think he appreciated it. Plus we went and got coffee and that always makes everything better.

I was saying her name over and over and still Raygen refused to look at me, lol. As soon as I put the camera down she looked at me and smiled and of course no picture of that, lol!!

So we had a great weekend. I feel so much better today after I got a full nights sleep last night. Our weekend night nurse quit because she is moving and so now Randy and I are on our own Friday, Saturday, and Sunday. Lets just say by Sunday I'm exhausted. We work in shifts. Randy usually goes to bed around 10pm and I wake him up at 3am to start his shift and I sleep till about 9am. We get nothing done around the house and its hard but sooooo worth it. I love Raygen I'd do anything for her. It's so weird to me that someday we will all be able to go to bed together. It's so exciting and scary at the same time. I wonder if I will feel the need to stay up with her all night the first few days without a trach, I probably will. If you know any nurses that need a job, let me know ;)

So we have two doctor appointments this week. Thursday we go to Seattle and see the trach doc. So curious to get his thoughts on the upcoming surgery and the possibility of no trach in the future. We will also be meeting Dr. Rubio who is Raygen's main cardiologist while she is a patient at Children's. The plan for the surgery is his idea so we will make sure we understand it all and ask any questions we have. Friday Raygen finally goes to get her 6 month vaccines. I am dreading this appointment.

Erin

Happy 7 Month Birthday

March 23rd 2011
October 23rd 2011, WOW how 7 months flies.

I can't believe today you are 7 months old. Raygen you have stolen my heart completely. I love you so much and you and your sister make everyday new and exciting and so very special. I am so proud of you Raygen. You have so much strength and courage and so much knowledge for such a young age. You look at me and I just know your telling me "everything will be okay." Raygen you are meant for wonderful things and I'm so proud and so blessed to be your mom. A month from today you will be heading into the operating room for your Glenn (unless they change it again) and like I have said so many times before my love, you are a survivor and you are going to be fine. You have so many people praying for you and so much love for you and I hope you truly know what a special, wonderful, little miracle baby you are. I prayed so very much for you and I am so lucky to have you in my life forever. I love you all the way to the moon and back.

Happy 7 month Birthday Raygen.

Mommy

The New Plan...Hopefully....

So I think we have a new plan. The dates have been scheduled and the people have been called so hopefully this time it will stick. The new plan is to check into Children's on November 17th and Raygen will be taken to the operating room on the 18th to have her trach removed and placed on the ventilator. Raygen is then scheduled to have her Glenn on November 23rd with 3 to 4 days after surgery taken back to the operating room to be taken off the ventilator. The plan now is to take her off the ventilator and see how she does before they re-trach her. They want to do all of this in the operating room because it is a controlled sterile environment. I just pray with my whole heart that she can breathe good without the trach. It gives me a small glimmer of hope that maybe just maybe we can home without the trach. We go to see the trach doctor next Thursday and we may discuss trying to take the trach out prior to surgery and see how she does or he may say we need to just do it after, we will leave that decision up to him. Raygen will also see her cardiologist next week as well for a follow up echo and ekg. She may also get her 6month vaccines next week too, I hate shots. We were putting them off till after surgery but now it looks like we have some time to do them before. I am glad we get another month at home with our girls. We will be home for Halloween and Zoie's 8th birthday. Raygen is doing so well right now. I just hope she continues to just bigger and stronger and doesn't get any colds. We are meeting with Dr Rubio when we meet with the trach doctor next Thursday to go over the plan again and make sure Randy and I fully understand what is going happen, since the plan is his idea. I'm nervous that Raygen's surgery is a day before a major holiday but I just have to trust that some doctors will stick around the hospital.

Who Dropped the ball?

Zoie carved her pumpkin and Raygen's all by herself. Her welcome pumpkin is my favorite and she made Raygen's pumpkin with eye lashes. So cute. Randy and I went for the easy pumpkins round eyes and mouth :)

Sleepy Baby.

She is watching her TV. Raygen does really good in the car.

So I got a call today from Children's and now were talking November 23rd for possible surgery. Can you believe it? Go from one extreme to the other. First its the 28th, then the 18th and now November 23rd. The surgeon is not available to operate in November till the 23rd and there isn't enough time to do it before he leaves next week. I really wish I knew who dropped the ball. This will give us more time to see if Raygen can possibly loose the trach before or right after surgery but I'm nervous that from a cardiac standpoint that she needs her surgery now not in a month. I have messages with two cardiologist to get their thoughts on everything. The surgeon says he feels she is okay to wait but is he saying that because it works for him or works for Raygen I don't know. Switching surgeons is a possibility if need be but I would really like the surgeon who did her Norwood to do her Glenn, who better to know her heart then the man that fixed it the first time. I have no idea what to do for now besides wait. I did schedule an appointment with the trach doc for next Thursday. To answer a question "Why are they not ventilating through the trach during the glenn?" When Raygen underwent her G tube and Cath they did just attach the ventilator to the trach but the cardio docs feel the risk is too great for an infection to use the trach. They feel the safest bet is to vent through her nose or mouth, close the stoma, then four or five days later re-trach her. I am asking more questions myself on this because I'm not a hundred percent sure if they are scared that secretions from the trach may lead to an infection or if maybe the humidified mist collar. Any advice in this matter would be great. So if anyone knows who dropped the ball at Childrens I would really like to know. I am stressed, scared, and annoyed. But everything happens for a reason and if it means I just get to be home longer with my girls then I'll take it. I'll keep you all posted and thank you again for all your prayers and support. I had to post a few more Halloween pics.

Halloween Pictures

On our way to the pumpkin patch. Don't worry Randy and I took turns with Raygen in the car. Next year she can venture out and pick out her own.

My two Jesse's
They were so cute together.

The costumes were too cute.

SO SO much fun. I can't wait till next year. I have so many pictues of yesterday its hard not to post all of them. No news from the doctors today so still no date so disappointing. I did hear a laugh and some really good cries today while Raygen was wearing her valve. So over all a very exciting and very happy weekend and Monday.

No Surgery Tuesday

So lets just say I'm a little frustrated with Children's Hospital right now. I got a call yesterday around 2pm stating that they need to reschedule Raygen's surgery because the plan they had worked out for her airway issues got lost between conference and scheduling and now there isn't enough time between yesterday and Tuesday to have Raygen ready. Their plan for her airway is this: they will admit her 3 days prior to her glen, they will vent her through her mouth or nose and take her trach out, they will then close her stoma (where the trach enters her airway) and let that heal for 3 days, during these 3 days she will be pretty sedated to keep her from moving too much while she is on the vent and they will probably give her some stronger pain meds because the vent is very uncomfortable for her. So then after 3 days on the vent they will take her back for her Glenn and 4 or 5 days after surgery they will then take her back off the vent and put her trach back in. I'm not sure if putting the trach back in is done in the operating room or at the bedside. I do not like this plan. I feel robbed of 3 days with my baby but at least they have a plan. I'm nervous that these doctors don't have their game together since this is the second time we have had to reschedule surgery. But I have to trust these doctors and trust their plan their the only ones we got. So again I sit waiting with no date and no idea of surgery but I have this feeling that they could spring it on my next week and it be a whole hurry and wait situation. I just don't want them calling Monday morning and saying we need to bring her up that day. I still need time to adjust and get my mind around whats going to happen. I hate seeing Raygen on the vent I have seen her go through some pretty awful stuff while on the vent and knowing she will be on it for 3 days prior to surgery makes me panic. I'm not sure how I feel about the whole situation. I'm not really sure about their airway plan because we do risk damaging the right side of her vocal cords again and that scares me since they have healed so nicely and we do hear some noise. I am numb to be honest. I had prepared for the 28th and that got canceled, then I prepared for Tuesday and now thats cancelled so I don't know what to do or feel right now. I am going to enjoy my daughters this weekend and not let this put a black cloud over us. We are still going to do Halloween pictures so hopefully I'll get those posted tomorrow. Thank you everyone for signing up to pray on Tuesday. I apologize for the dates always changing and I hope you stick in there and are able to pray on the new day because she needs all the prayers she can get. Raygen is going to go through so much and the only thing we can do is pray. My Raygen in a survivor, fighter, and the most courageous, beautiful baby I have ever known and I know with all the love and support in sent her way she will be fine more then fine.
I would also like to thank the students in Mrs. Witt's third grade class at Edison Elementary for the wonderful cards that they sent Raygen. Thank you so much. You are all so wonderful to think of her and pray for her. Thank you to Alannah Riggs who told her class about Raygen, you are so sweet and it was so very nice of you. God Bless all of you.

Post Op Appt Update

Tired Baby.
It was a very long day. Were waiting to meet with the surgeon. I think Dad almost took a nap too.

Almost done.

Cute Baby.

I love her feet.

So I think all heart moms would agree you leave post-op day more frustrated and with more questions then when the day began. Raygen had blood work, x ray, and an ekg, which were all good I think because I didn't hear otherwise. We met with a nurse practitioner, the surgeon, and the anesthesia people. Which to be frank was all a waste of time beside meeting with Dr. Cohen. No one has any answers and even the people we met with are not the people that will be helping with surgery or be seeing Raygen. So all in all I was mostly just irritated. I am most concern about how they are going to place Raygen on the ventilator. Are they going to use the trach? Take the trach out? Put the trach back in? No one knows. The answer we got was that they would try a couple things to see what works best, that does not make a parent feel good knowing that their going to "try" a couple things. Pretty much they are going in blind and hopefully they will not make my baby feel too much pain before they figure out their plan. Dr Cohen said Raygen was a "big kid" which is good. I'm glad she has lots of reserve. He said from a heart point of view she is good and her cath looked perfect. Raygen is a great candidate for the glenn. So the major issue is airway. No one knows how the trach is going to affect the surgery or the healing process after. This is the most stressful part for me. Not only do we have the stress about Raygen undergoing major open heart surgery but not having a plan for her airway issues drives me in sane. If anyone knows me I'm a planner, a list maker, and a note taker and so this is beyond stressful. They also told us that most babies after the Glenn get major headaches afterward due to the blood flow to their head and I'm nervous this will happen with Raygen. The plan is to check in Tuesday morning at 6:15am. Raygen is 1st on the surgery schedule. My wonderful friend Sarah will update the blog as often as she can and I will do my best to keep her updated so check back here for updates. We are going to enjoy a nice family weekend together and get the girls in their Jesse Halloween costumes. Wait till I post a pic, hopefully Sunday, they are the cutest ever. Please pray for Raygen. There are so many uncertainties and so many

questions but I know with so many people praying and sending their love to Raygen she will be just fine. She is so strong, she is my hero, and we love her with are whole hearts.

Erin

One week from today

Thank you from the bottom of my heart to Sarah and everyone who has signed up to pray for Raygen on surgery day, October 18th. I can't put into words how much all your love, support, and prayers have helped our family and especially our beautiful Raygen. Thank you. Thank you.
Raygen got lots of relaxing in this weekend. I think she is in a Toy Story daze in this picture. Trust me parents Toy Story works magic.

Raygen's new thing is to pull her hair. She does it even when she isn't mad, lol! But when she does get mad watch out because she usually takes a hand full with her.

Raygen and Zoie got some good sister time yesterday. So very important to both of them.

I can't believe that this time next week I will be sitting in the Children's ICU waiting room waiting to see how my daughters 2nd open heart surgery goes. My heart is filled with so much sadness. I am sad that Raygen has to go through all of this and I'm sad that she has to experience so much pain and discomfort. I hope when she is older she won't remember any of this. The only hard part is that I will. I'm scared, but who wouldn't be I guess? I know there is no way we can avoid the surgeries or the hospital trips but it by no means make them any easier. I find myself crying all the time lately and I know it's because I don't want to go back. I don't want to give my child over and loose control. When your in the hospital especially the icu you don't get to be the "mom" you are at home and I hate that part the worst. I know Raygen will be okay. I know in my heart Raygen will be fine especially with all the love and support she has. I guess the only positive about doing surgery next week is hopefully we will be home and healed by the holidays. I can't wait to celebrate the holidays with my family of 4. This year will be different because we will probably spend most our time at home but it will be wonderful no matter what. I know I have to remember that Raygen is so strong and that she is so healthy and such a fighter that she can make it through anything. One week from today I will be a mess that is a fact but my daughter will be a survivor and if she can can do it so can I. Amazing how a beautiful 7month old baby can be my finding grace, bring me closer to God, to my husband, to Zoie, she is half the heart that makes our family complete.

I had to post this picture. Raygen snoozing with Grandpa. So cute.

Erin

Raygen Noise

Listen closely and you will hear beautiful little baby noises from Raygen. I'm so excited. When we put the valve on her I feel like a child on Christmas day waiting to see what happens or what I hear next. Hearing Raygen make noise is so wonderful. I have not heard Raygen make noise since she was 6 days old, right before her first surgery. Even before the trake Raygen had such a hard time breathing we never truly heard a cry or baby babble. I hope by Christmas we will be hearing a lot of Raygen noise. By the grace of God there will be wonderful miracles this holiday season in our family.

New Surgery Date

Raygen fell asleep with her passe mere valve.

She loves chewing on blankets lately, especially these white ones.

So I got a call on Wednesday they decided to move Raygen's surgery to October 18th. So in 12 days my beautiful little girl will be having her second open heart surgery. I'm so scared. We go to Childrens on the 13th for pre-op. Pre-op will include blood draw, x rays, echo's and ekg's. I pray that the blood draw will go smoothly a one poke shot. She is feeling better today, thank God. Raygen had a good day yesterday with her Dad. She wore her valve alot and we heard some really good cries. Raygen was very mad when we heard noise, but hey we heard noise. Raygen is smiling today and starting to look like her normal self, I hope she is over whatever she had going on. Now that her surgery is approaching so fast I can't help but think about all the things we haven't done yet. I think of all the times I wanted to give Raygen big kisses but didn't because "just in case" I have something she could catch. I hate it when Raygen cries, I never want her to have one moment of unnecessary unhappiness when she already has had so much pain. I pray with every fibre of my body that after the Glenn we can come home and make up for time lost. We have big plans for our little Raygen when we get home. Were going to work on getting rid of the trake so we can take family trips, see Santa Clause, go to grandma's house, meet some of our aunts and uncles and so much. I'm scared so very scared but I know we have such an amazing God and that I have to trust him and pray that surgery will go fine and we will bring Raygen home happy and healthier then when we left. I also have to remember we have a beautiful, amazing, strong, fighter, couragous, daughter who I love to the moon and back and so much more. Thank you to everyone for all your prayers and support and please continue to pray for Raygen. The next few weeks are going to be tough emotionally and physically for Raygen and our family.

Erin

Cold?....

Sister Time. Gotta love the feathers in Zoie's hair.
What is on our tv 90% of the time, lol

Raygen watching Sesame Street, the picture above.



Raygen still watching Sesame Street or Toy Story both she loves sooooo much.





Please keep Raygen in your prayers this week. The last two days she has not been feeling good at all. Her temp's have been running on the high side and she is just not her normal happy self. I don't think I'm ready to rush her to the ER but we are definitely keeping a close eye on her. I don't know if her throat is still sore since the doctor said it was red last week or maybe she is teething, but I haven't felt anything different about her gums. I'm a nervous wreck. We are so close to surgery that anything could postpone it and that would not be good. As bad as I don't want to have Raygen go through surgery, I don't want to postpone it. Postponing surgery means Raygen will only get weaker and we need her going into surgery strong and healthy.


"Rejoice in our confident hope. Be patient in trouble, and keep on praying."
Rom:12:12