Were HOME!!!!

"Cookie Monster, How I have missed you."

Last nap at the hospital before home.

I'm ready!!!

Why am I wearing clothes? Are we going somewhere?

We are home!!! Two weeks was all this time. That is just so amazing to me. Raygen has been through major open heart surgery and a heart cath and she is so tough that we are home in two weeks! She truly is our miracle. Raygen is doing good. We are still on .5 liters of oxygen but I think we will eventually be able to wean her off. We will discuss that more with Dr. Park on the 5th. I get to start setting up appointments for oral therapy and a nutritionist. We are finally able to start working with Raygen to eat by mouth. So exciting. Raygen hardly slept last night I think she is still on hospital time. Raygen still sounds pretty gunky when she coughs so I'm hoping she will continue to work through it and then maybe her 02 sats will be better too. I am nervous to be home. The fear of sickness or complications or anything is huge right now. Raygen needs a few good weeks of relaxing and healing before we will be good to go for awhile. I can not believe we don't have the Glenn surgery hanging over our heads anymore. I told Randy driving home yesterday that it feels like a huge weight has been lifted from our shoulders. I know Raygen will have to have caths and one more major surgery but hopefully we will have a long needed break. She deserves it. I will keep you posted on the dates of all of our follow up appointments. Next week with Dr. Park is the one I can't wait for. I just need to hear from him that she is okay.

It was wonderful to be home last night as a family. Our beautiful daughter Bryden is here from Texas so it was extra special having all three of our girls home on such a wonderful night. We will get to celebrate the New Year together and what a New Year it will be for us.

Thank you again for EVERYONE who prayed for our family and our wonderful Raygen. Randy and I are planning a huge 1st birthday party for Raygen and we would love to have her dedicated to our church. We will also be posting those dates as well because everyone is welcome!

God is GOOD! God Bless!

Going Home!!!

Rrin texted me and said they are going home today!!!!!

Home...Maybe....

So the doctors finally rounded today and the word "home" was talked about. They were going to take a look at her echo and ekg to make sure everything looked okay. Her x-ray this morning was good so that was reassuring. We will go home on oxygen but when I talked to our Cardio doc at home they didn't seem to concerned with it. They said that sometimes Glenn kids need the oxygen support for a couple months to give their body time to adjust to the new flow. I am a little nervous going home on oxygen but it is way better then a trake. I do truly believe that being home surrounded by her things and in her comfort zone Raygen will heal quicker then being here. We have already scheduled a follow-up appointment with Dr. Park on January 5th and I will feel better after he lays eyes on her and gives us his thoughts. Overall Raygen is doing good. She looks good. She is playing with her toys, watching her tv and just being more awake and aware. Were getting smiles and are starting to hear some of her baby noises again. I just pray she continues down this path of healing. We still have a lot to do. We are going home with some new meds, oxygen, and we have to work on increasing her feeds, but Randy and I are perfectly fine with dealing with all this. Thank you to everyone for all your love, support, and prayers. It looks like we may be home to ring in the new year which will be wonderful! Hopefully a year filled with fun, bonding, love, hugs, kisses, and a break from surgeries and Children's hospital. Knock on wood. I will keep you posted on "home."

Christmas Pics

Hope everyone had a Merry Christmas! Raygen is doing about the same today. The doctors wanted to try to wean off oxygen today but Randy and I decided it would be better for Raygen to go up a little so she is on .5 liters. Her sats are still on the lower side but since we increased her oxygen we have started to see higher numbers and less dips in the 60's. Since we didn't let the doctors wean oxygen and heaven forbid they come into our room and not change anything they decided to up Raygen's feed a little since they couldn't wean her pain meds yet. So far I think she is handling the increase but only time will tell. I wish the doctors would get the mind set of trying to figure out "why" she needs the oxygen before they try to wean her. So frustrating at times.

Merry Christmas!

Merry Christmas! I can't believe that this time last year we were celebrating the holidays with our families at home not knowing what the year ahead would bring. As I sit her at Childrens with my husband and Raygen I can't help but be thankful. Yes, I miss Zoie more then you could imagine but I am still the mother to two wonderful little girls. My heart aches for all families who lost a child and the reality of that surrounds you here. I was able to go home this morning and be there when Zoie woke up so I got to see all the wonderful things Santa brought her and all the wonderful 8 year old expressions with each and every gift. I must say her favorite was her pink Nintendo DS. This holiday more then any other I understand and appreciate God's love for us. He has blessed my family beyond anything I could imagine this year and he continues to do so. I know that so many people have found God through Raygen. You can not have any doubt in him when you look into her beautiful eyes. She is truly our miracle. I pray for all the families in the hospital this year and hope that they also find peace and know that better days are to come to them and especially their children. I know next Christmas we will make extra special for our girls.

So I know your all needing a Raygen update. She is doing a little better. We went back up on her pain meds to rule out withdrawal and came down a little on her feeds. She is on oxygen and her o2 sats are still in the 70 to 75 range and drop down in the 60's fast when she is upset. The doctors say we just have to give her time but I can't help but constantly worry that something is wrong. I always heard sats after the Glenn would be better or at least the same but in Raygen's case they seem a little lower. She is also on blood pressure medicine which I think makes her cough alot but a nurse practitioner told me that rarely is a side effect, lol! I just have to laugh at that because if you know Raygen's story if there is a "rare" in anything we usually have it, lol! I get so frustrated with doctors here. Sometimes I want to scream. We are still on the wait and see game and just see how she does. Maybe we will just go home with oxygen and hopefully be able to wean her off but I have no idea. I can sit here for hours and run all types of situations through my head to figure out whats going on but the truth is I'm no doctor but what else can a mom do.

Please continue to pray for Raygen and all the families here at Childrens. I hope you all have a wonderful Christmas! God Bless you all!

Please say a prayer

Raygen is having a tough night. Her 02 sats have been low again and she is supper fussy and has thrown up a couple times and has had lots of dirty diapers. The worst part is they took out her line today so if we need to give her medicine or fluid we will be in trouble. Please pray for her because I am scared and I don't know what else to do. Were just watching her and praying and doing are best to make her happy which is alot of moving, bouncing, anything we can think of. Please pray for her.

Cranky and 9th Month Birthday

HAPPY 9TH MONTH BIRTHDAY RAYGEN!

Lets say we had a long night. Raygen slept good if we rocked her but put her down or let one of the nurses or doctors touch her and she went wild. She is looking like she is starting to feel better and her 02 seems to be in the higher 70's so that's great. The doctors think her 02 should get a little better through the next few days. It always takes Raygen a few days to recover from any procedure so I'm not surprised her o2 is still on the lower side. They hope it will level out in the high 70's to low 80's. The plan for today is to let her rest and recover. She has one more round of antibiotics to get through her central line and then that can come out. She already lost the iv in her foot this morning. She will have to have a heal poke at some point today :( to check some levels and she had an x ray this morning. So hopefully tomorrow will be a better day. Raygen is coughing a lot and I know her throat is sore because she tries to hold her coughs and then when she does cough she cries. Its heartbreaking that they can't give her anything for a sore throat.

It does look like Raygen's 1st Christmas will be at Children's but I don't care one bit. Raygen is here and that's all that matters to me. I do miss Zoie so very much. I feel like a huge part is missing from me but I will get to see her Christmas day and I know that my family is taking wonderful care of her. Thank you mom and dad, I love you very much. Also thank you to Ray and Dorothy (Randy's parents) who have been a huge support system for us and who also watches out for Zoie.

I can't wait to post pictures of Raygen in her "first Christmas" t-shirt. Hopefully she will feel better by then and I can get some clothes on her.

Please keep praying for her. She still is in some pain and discomfort but she is heading in the right direction.

In Recovery

We just spoke with the doctor and Raygen is now in recovery. They had to place a stent where they removed the sano shunt in Raygen's heart. The area had a curve in it and blood was having a hard time traveling to the left lungs. They placed the stent to straighten the area out and now she is getting good blood flow to both lungs. We saw before and after pictures and it is truly amazing what they did and the improvement in blood flow. By doing the cath we avoided another major heart surgery. The doctor said her o2 sats was 85 but I will wait to get excited till I see it myself for a couple days. I am nervous it did take the doctors two hours to get access. I know she does have a small iv in her foot and a central line in her groin which I hope both can come out in a couple days. Please pray for Raygen tonight. I know she will be in alot of pain and discomfort. God worked a miracle today. God is Good. Raygen is one tough girl.

Still in Cath

Erin says: they are still working on Raygen, she is good, placed 1 stent so far. Not sure how much longer!

Now 11am

If you know Raygen's story you know nothing happens when its suppose to at Children's. So now the cath is at 11am. Raygen was going to be first but it appears she will be second now. I hope it actually happens at 11 because Raygen has been without feed for awhile and I know that is going to start to upset her soon. I'm so nervous. I have no idea what they will see on the cath and what is going to be needed to fix it. I pray that they are able to get access easily, easily get an iv and that everything goes smoothly and they are able to correct any and all issues. Please continue to pray for her and I promise to post an update as soon as I know something. Hopefully not another update with a new time.

7am Cath

I was just told that Raygen's cath has been moved to 7am this morning. They will come around 6am to take her back. Please pray for her.

2pm Cath Time

We were just told that Raygen's cath tomorrow will be around 2 to 2:30pm. Please say a prayer for her. I do not know how long the procedure will take. I think it all depends on what they see and decide what to do. I will update as soon as I know something. Thank you to everyone for all your support.

Cath Tomorrow

So we spoke with the doctor today and they have decided to move forward with the heart cath tomorrow instead of repeating the echo. They feel like there will be no change in the echo and they will see more of her heart and the issue with the cath. They do feel like the narrowing that they seen in the echo is concerning and may be the reason that Raygen can not maintain her o2 sats. She had an okay night but she was pretty fussy and restless yesterday. She seems to be more content today. We may even try to do a sponge bath and try to get the huge knots that have formed in her hair. I really do not want to cut them out and have her have bald spots, lol! Please keep Raygen in your prayers. The cath lab will first try to stretch out the narrowing with a balloon and if that doesn't work they will place a stent. Hopefully whatever is the issue they will be able to fix tomorrow. I pray Raygen feels the least amount of pain and discomfort. That they are able to get access easily and that there are no complications. I will keep you all posted. Thank you again for all your love, support, and prayers.
God Bless!

Echo on Thursday

So overall Raygen had a good night. She was daddy's girl and I was able to go home and spend some time with Zoie and watch her during her Christmas Pageant. Zoie was so great. She is so cute and I am so sad we had to say good bye again so soon.

As for Raygen she is doin good for the most part. For what she has been through she is amazing. We just spoke with the doctor and there is some concern with her Echo. There is an area of narrowing that may be the reason her o2 sats are so low post glenn. They would like to see then around 80 to 85 Raygen has been more 70's. They are going to repeat the echo on Thursday and based off those results decide if they need to take her to the cath lab and try to balloon the area and see if they can stretch it out. This is very nerve wracking because they will have to do this very carefully because the area they need to stretch is being held together with new stitches. As far as being home by Christmas that really depends on Thursday's echo. I have this feeling we won't be just because the look on the doctors face. Raygen's x ray showed she still had some fluid to pee off so she will also get another one tomorrow. They were unable to get any labs from her heal pokes (2 of them) today so they have paged the iv team to try again but this time I think it will be more then a heal poke :( So now we just wait. Waiting is so hard. Please keep Raygen in your prayers the next few days will be important.

Also please pray for baby Anna's family. Baby Anna passed away and my heart is aching for her family.

Floor Day 1

So this morning her x ray still showed a little fluid on her lungs so they are still giving her lasix 3 times a day to help pee it off. This may be part of the reason her o2 is still on the low side. The blood pressure medicine seems to be working and we will probably go home on it which the doctors assure me isn't uncommon and actually has some benefits for long term heart health so I'm not freaking out yet. She did have some blood work done this morning and we were able to stop one med but unfortunately she will need to have another blood draw tomorrow morning to make sure everything still looks good and then we could be done with blood draws, hopefully. She will also have another x ray tomorrow morning to check her fluid status. She did have an echo and we are waiting for the results and hopefully will have them soon. I am nervous because the doctor said sometimes when the o2 is low it is a sign that a stitch or something is too tight and Raygen may have to go to the Cath lab to get some adjustments made. I'm a little freaked out but if this is the case I will get more and better information. The last cath Raygen had was very hard on her and caused her alot of pain so this is something I really pray she doesn't have to go through plus a cath would be another central line which is always a risk for a clot.
I will post echo results as soon as I get them.
Thank you to all for all your prayers. God is Good!

From the floor

First time I got to hold her after surgery was last night.

The bottom picture is from Saturday.

Friday Afternoon

Thursday, right after surgery.

Sorry my pictures are always out of order.

First I want to say thank you to everyone who has prayed for Raygen and our family. I would love to list you all by name for all the support you have sent our way but I am scared I would leave someone out so a BIG THANK YOU. Thank you also to Sarah for updating the blog. I know Raygen has come so far but we still have a way to go. She is still in alot of discomfort and is either awake kinda fussy or mad or sleeping. We are still watching her heart rate and her higher blood pressure. The doctors are thinking that her body is just adjusting to its new "normal" and those things should get better with time. She will have an echo and ekg tomorrow to make sure her heart function is still good and I can't wait for those results. She is also still on oxygen so I am also hoping as the days go by we will be able to wean her off. I really don't want to go home on oxygen but in all honesty as long as I get to take her home I don't care what comes with us. Raygen is such a fighter. I also pray she will need no new iv's or blood draws because we don't have anymore lines. Raygen is so strong. I hope each day will get a little better and we will start to see more of our happy baby. I know she is still in pain her incisions and chest tube sights all look pretty sore and I know her neck is still sore from her stoma being closed. Please continue to pray for her and again thank you all so much. God is good.

God Bless you all!

Erin

Moving the Floor!

They upd her blood pressure meds and are watching her heart rate and she is still on a little O2.
They will do an echo and ekg tomorrow to make sure everything looks okay heart wise after the glenn proceedure.

Update from Erin: Sunday AM

Saturday 9am

They are watching her closely if her O2 doesn't come up and blood pressure doesn't come down their might be a problem with the connection made during the Glenn (procedure).

They are giving blood some blood pressure meds to see if that will help.

They took out the chest tubes, but her head is still swollen so a headache could be a big issue for her right now.

Please continue to pray!

Saturday AM Post/Prayers

While many of us on Saturday morning are running around making last minute Christmas plans, buying presents, or making Christmas cookies (that's what I, Sarah, am doing today), Raygen is in the hospital (not a fun place) with tubes coming from all over.

Erin's Text This morning:

Raygen had an OK night. Very restless and very sensitive to noise or movement. She is still in a lot of pain and getting extra pain meds.

She is positive on fluid and they like her to be a little negative and she isn't really responding to the diuretics she needs to start peeing.

Still on O2, may get her chest tube out and central line from her neck.

Then Erin might get to hold her :-)

off vent!

Raygen off vent, in a lot of pain, need O2 levels to improve!

keep praying!

Raygen is still on the vent, her O2 is low, she has extra fluid to get rid of, when they give her O2 her stats don't go up (not good). Please keep praying, and that she won't need to be retraked! And pray that she will continue to heal and not be in pain!

out of surgery

raygen out of surgery, it went well

5:50 update

raygen on bypass, stable.

erin said to pray for baby anna http://babyannajoy.blogspot.com/

Raygen on bypass

okay text says she is on bypass now. please keep praying.

in surgery now!

text form Erin, Raygen taken and in surgery NOW!

Please pray!

Just taken back for surgery

just go text from Erin, Raygen was just taken back for surgery!!!!!!!!

Please pray!

I want to SCREAM!!!!!!

GUESS WHAT!!!!!!! THEY CHANGED THE TIME AGAIN!!!!!!!!!!

I want to scream. My frustration is at a boiling point. Has anyone else had this problem with Children's? I'm beginning to wonder if we are going to the right place. I want Raygen to be a priority. She is my priority when will she be theirs? When it's an emergency situation?

Check in @ 12:15am

Surgery: at this point God only knows. I don't even dare put a time.

Please God help me stay sane because it's getting a little hard to not have a total breakdown.

Tomorrow is the day...

So tomorrow is suppose to be the big day. I can't help but worry that it is the day and at the same time worry that they will cancel again. I am scared, but I also know that Raygen can not live long without the surgery so we must go forward. I know tonight will be so stressful. We have to again for the third time pack up our car, tell Zoie goodbye, and get up super early to leave in the morning. I believe we are leaving around 3:45am to make it to Seattle by 6:15am check in. The surgery should start around 7:30am and should last around 4 hours. I just pray that everything goes smoothly and on schedule. I pray that our surgeon, nurses, and doctors are all rested and that God works through them to heal our little girl. I pray that Randy and I have the patience needed and that we make the best decisions in Raygen's care. I pray Raygen goes through surgery safely and smoothly, that she is able to come off the vent fast with no complications to her airway or vocal cords, that she feels the least amount of pain and discomfort, that they are able to get all the access they need from her poor veins and that she doesn't receive any more blood clots. I just pray for Raygen's safety and that we are able to bring our smiling, laughing, smart, bright, beautiful baby home. I also pray for Zoie, that God also gives her the strength to under go another few weeks far away from her parents and sister. I pray for so much more but I know God hears my heart. Thank you to everyone for all you prayers and support. Please pray for Raygen tomorrow. We will do our best to keep the blog updated. Please check back here for updates.

So Sorry....

So as all of you know surgery has indeed been rescheduled AGAIN for Thursday check in at 6:15am. So Raygen is the only one scheduled for that day so hopefully everything will go smoothly and on schedule. The reason it was cancelled today was the baby that they pushed us back for wasn't doing so well so the surgery was going longer then excepted. Please say a prayer for that baby and family, my heart aches for them. I am fine with re-scheduling because I would much rather Raygen be first and have a rested surgeon instead of a surgeon coming out of a 10hr operation. We are all at the mercy of the hospital and like my husband says "a plan is only good the minute you make it in." So I am sorry for everyone who prayed all day for our wonderful girl but THANK YOU. She had a good day. I think she knew she escaped something today, lol! She was all smiles and laughs when we left. I know alot of that was because of the constant prayers she received today. My mother in law prayed that surgery would happen in "the right time" and I just have to believe God answered her prayers and today was not meant to be the day. Today was so stressful but as I sit here home watching Raygen and Randy play my heart is at peace. I can enjoy two more days like this. I feel bad for Zoie we keep stressing her out thinking we wont see her for a few weeks and then we come home the same day, poor girl. With surgery post-poned I'm not sure we will be home for Christmas but as long as my two girls are happy and healthy then I don't care if I'm at a hospital or on the moon. Thank you again for everyone who prayed today and please continue to do so especially on Thursday. Raygen has a long journey ahead and all we can do is pray that everything will be okay. So we check in Thursday morning at 6:15am (leaving our house at 3am) with a surgery start time around 7:30am. The surgery should take about 4 hours. We will do our best to keep the blog updated. Thank you again Sarah for doing so today.

God Bless everyone!

SURGERY MOVED AGAIN!!!!!

JUST GOT TEXT FROM ERIN, SURGERY MOVED TO THURSDAY!!!!!!!!!!

POOR RAYGEN ERIN AND RANDY!!!!!!!!!!!!!!!!!! STRESSED OUT MOVING IT AROUND ALL THE TIME!!!!!!!!!!!!!!!!!!!!

Gods time!!!!!!!!!!!!!!!

surgery update

it is 1:37pm PST and they are still waiting to take Raygen back for surgery, could be a couple of hours Erin said!

Time Change

They changed surgery time. Lets hope that is all they change for tomorrow. Now we check in at 10:45am and I'm not sure what the actual start time for surgery is but I'm thinking around 12 or 1 but I will try to let Sarah know after we get checked in and she will let you guys know.
Thank you for all your prayers and support. Tomorrow is going to be such a long stressful day. I just pray with my whole heart that Raygen will have a successful surgery and be okay.

Post Op Udate

So yesterday was a very long day, 10 hours in fact. We left our house at 8am and didn't get home till after 6. Overall Raygen did great. The nurse gave her a look over, a chest x ray, ekg, and blood work (which was a 2 poke) and then we spoke with the anesthesiologist and then home we came. No new information. I think they all just wanted to lay eyes on Raygen to make sure she was good to go for surgery. Which she is, thank God. So the plan is to have a nice enjoyable weekend at home as a family. We will leave our house Monday morning around 4am. We check into the hospital at 6:45 with a 8am start time for her surgery. I'm not sure exactly how long the surgery is I assuming a few hours. The plan is to get her off the vent as soon as they can after surgery, possibly while she is still in the o.r. to avoid any damage to her vocal cords. I'm starting to freak out. Looking at her today she is so perfect and happy and to me healthy. I don't want to see her go through what she is about to. I don't want to see her in pain. My nerves are on overdrive and my emotions are everywhere. I have had a glimpse of what our future holds these past 3 weeks with no trake and it looks wonderful. I just want to do everything with Raygen. I want to have girl trips with Zoie and Raygen and take them to the zoo and shopping. I can't wait to take family vacations and show Raygen the ocean. I would love for us all to be home to celebrate her first Christmas together. So much that "I want" I feel selfish. Most of all I want Raygen. Please keep her in your prayers next week. Your prayers and love have kept us going and have helped us through so many tough times. God is good and I trust in his love for our family and most of all Raygen. He has touched her so many times and I pray he touches her again and delivers her safely through surgery. God is good. Please remember my friend Sarah will udpate the blog on Monday so check here to follow Raygen's progress.

Surgery too soon...

I can't believe surgery is on Monday. This week has gone by too fast for me. We go to the hospital tomorrow for pre-op. Our first appointment is at 11 with the Nurse Practitioner and then blood work (I pray a one poke blood draw), x ray, possible echo and then we meet with the Anesthesiologist.

Raygen has had a good week. She is such a happy baby. I think the only time she cried was when she woke up from her nap or in the morning before she wanted to and when she has her gas issues of course, lol! My poor baby. She gets the worst tummy aches.

So I will try to post again before Monday but if I don't I just wanted to ask everyone to pray for Raygen:

-Please pray that Raygen feels the least amount of pain and discomfort.

-That the doctors are able to gain iv access without too many pokes.

-That Raygen's heart surgery goes smoothly with no complications.

-Pray that Dr Cohen is rested and that God works through him during the surgery to repair Raygen's heart.

-The Nurses know what to do when Raygen comes out of surgery.

-Raygen gets the pain medicine she needs soon.

-Raygen is able to come off the vent quickly and that there is no damage to her vocal cords or her airway.

-No trake, again.

-Pray that Randy and I stay strong and level headed and make the best decisions for our baby.

-Zoie will be okay. It will be hard for her to be apart this time. That she does not get another cold that keeps us apart longer then needed.

-That Raygen is okay. No matter what I just want her to be okay.

There are probably so many more and I know I will think of a hundred after I post this but I know you all understand. I can't be more afraid then I am at this moment. I have such a wonderful family and I see such a wonderful future for us. Raygen has grown in these 3 weeks more then I could have dreamed. She has gotten bigger, stronger, found her voice, her cry, and her laugh. Her smiles melt my heart and soul. I love my children more then life itself and if I could go through this for Raygen I would and I wouldn't think twice. The hardest part is knowing I can't do it for her. I trust that God is with us and that he has touched Raygen. I know their is no way we could be here today if he hasn't and I pray with all my heart he will again deliver us a miracle on Monday and that Raygen will be okay.

Raygen Marie, you are the light of my life. You are the missing piece that makes our family complete and each day my love for you grows stronger. Like I tell your sister "I love you more then anyone in this world ever will and I love you no matter what. Why? because I'm your mom." Raygen you have stolen our hearts and I thank God for every day I am blessed to be your mom. I must have done something right in my life to get you and Zoie.

I cant put into words how my emotions are going crazy right now. I need to pack and prepare but yet I just can't seem to get motivated to do so. I keep telling myself I have this weekend. So I guess I better go pack.

My friend Sarah will update the blog on Monday so to stay up to date on everything please check here and my dad will also be at the hospital so you can call him or text and he'll try to respond. Thanks in advance Sarah. You are such a good friend.

Raygen we love you soooo much and I know you are such a fighter. You have courage beyond your age. You are a survivor and a warrior.

Thank you for all your love, prayers, and support.