Fussy day

Raygen has been doing so good over the past few days. Today she is worrying me though. She seems to be more fussy then usual and her temp is higher then normal, although not 101.5 yet and hopefully we will not see that number. Please pray that she isn't coming down with something. A cold or anything could set her surgery back which she so desperately needs, sooner than later. I have went through our house today and cleaned and sanitized everything which I do a few times a week so I'm hoping she hasn't caught anything. We have been so extra careful. I will feel horrible if she gets sick.

Relaxing

We can sit in our bouncer now too without spitting up. Soooo exciting.

Swing Time

Raygen has been enjoying her swing since we have been home with no trake. She used to spit up every time we put her in it, but now she loves it. She even took a nap in it today. Coming home with no trake has been such a huge blessing. It's amazing how much Raygen can do now without having the issues she had with the trake. We are really going to enjoy the next two weeks before surgery. Raygen is such a blessing. Please say a prayer for Zoie. She has been sick and having to stay at my parents and it's so hard for me and her to be apart. I hope she feels better tomorrow so she can come home.

Were Home

On the floor. She was pretty exhausted.

What we missed at home. The first snow of the season.


At home.

Right after she came off the vent.

On the vent. Thank you God that she didn't have to suffer 5 days like this.

So we are home. We got home last night around 7pm. The traffic and weather was horrible. It took forever to get home. Raygen seems to being so good without her trake. I can't begin to thank God enough for this wonderful, amazing blessing and thank you to everyone who prayed for Raygen. Bless you all. Her surgery has been rescheduled for December 12th with pre-op on December 9th. I hope we are home before Christmas but more then anything I hope we come home from the Glenn without the trake. Raygen has such a wonderful cry. She hasn't figured out any other noises to make but she will catch on. Raygen is such a miracle. I am nervous for surgery but I feel like we have overcome the biggest obstacle so far, her airway.

Happy Thanksgiving.

Happy 8th month birthday Raygen!

Home Tomorrow, Maybe?

So no new surgery date but it isn't Wednesday for sure. We should know a date tomorrow. The plan now is to go home and heal for two weeks then come back for the Glenn. Raygen has had a better day then yesterday and they found a pretty good pain med for her so she was able to get a good nap in today. She is finally starting to be awake without crying. She is looking around and watching tv and has even smiled a few times. So to go home tomorrow Raygen needs to have a good night and in the morning ENT will come and scope her vocal cords and make sure her airway looks good and if they are comfortable with us going home then we will. This is such a scary experience. I can't put into words how I feel because I was not expecting any of this. This is such a blessing. I just pray that Raygen figures out how to breathe comfortably and that she is still able to gain weight and avoid getting sick till the Glenn. I pray so hard that we will not need to be re-traked after the Glenn as well. I will post more later. She is starting to cry so I'm off to hold my baby.

Were the same

Raygen is still doin the same. Very fussy and uncomfortable. We have upped some of her pain meds to help her and she has been able to get one good nap in today with their help. She is not too impressed when she is messed with and doesn't really seem to want anyone but me to hold her. I'm hoping tonight she might become a little bit of a daddy's girl so I can get some sleep. It is really hard to sleep when she is crying, it breaks my heart. I know if I was her I would want my mamma to hold me too. Sorry for no pics or video yet I promise when I have time I will post one. Please continue to pray for her. I so want her to be okay.

On the floor for now

We got moved to the floor today. Raygen has no trake so far and seems to be doing pretty good. She has such a loud cry. She is still in alot of pain and were not sure why. Right now she is either screaming or crying and she hasn't been able to find that deep sleep she so desperately needs. So my back is sore all we do is hold her for a few minutes, set down for a few minutes, and repeat. My heart just aches for her. I know something hurts I just can't figure out what and that's so frustrating. I hate seeing her sooo uncomfortable. The plan is to watch Raygen over the weekend and see how she tolerates breathing on her own and see how her o2 stats are. Monday they will decide if the plan is to continue with the Glenn on Wednesday or put if off another 2 weeks to give her stoma sight time to heal. Yes I said the Glenn may be rescheduled again! But before I go crazy over that I just want to focus on healing my hurting baby now. Please pray for her she is so uncomfortable and its heartbreaking to watch. I will post pictures or a video when I can. Gotta go hold the baby. Thank you all for your support and prayers we would not be here without you.

On or off the Vent

Okay, Erin texted that Raygen has the trach out and is in a lot of pain.

The good news is that they were trying to let her breath on her own without the vent and she was doing good with just a little oxygen and making noises.

They were going to see how long that would last for.

I hope I got this update right.

Please keep praying!

-Sarah

Checked In

We are here and checked in and I finally got Raygen to sleep. I think she knows something is wrong because she just wouldn't settle. There really is no where like home and I think she knows she isn't there. We were suppose to be checked into the ICU for the night but they did not have a nurse for us so we are on the floor which is fine with me. We have a nice big private room. They were going to try to put an iv in tonight but I put my foot down, lol and it felt good. I am going to try not to be a huge pain in the butt for doctors but they will not put her through anything I feel is unnecessary this time that is for sure. So I got my way. They will place her iv tomorrow morning when she is sedated so she will not feel any of the poking. The plan is they will take her back to the operating room around 6 or 7am and take out her trach and place her on the ventilator. I am not sure yet if she will be on the ventilator through the mouth or nose, I hope the nose I hate the fish lips our poor girl gets when its through the mouth. I am so scared. My nerves are going crazy. The drive up here went by too fast. Please pray for Raygen tomorrow that everything goes smoothly. That they get an iv easy, that she feels no pain, and that the procedure of closing her stoma goes as planned. On another note I miss Zoie like crazy. This time is so much harder. I just pray were not here months like we were last time.

On a great note Aiden is doing wonderful after his Glenn. He is already off the ventilator. His mom said he was in a lot of pain and was getting extra meds so please keep him in your prayers too.

Thank you to everyone for all your love and support and I will update tomorrow after Raygen's procedure and once we get her settled.

Tomorrow is the day

Please pray for Raygen's heart buddy Aiden today he is having his glenn.
Sweet Baby Girl.

My two girls. They are so cute.

I think she is an Elvis fan.

So today is emotional for me to say the least. I kept Zoie home so we could spend the day together. Me and my girls. I got most the packing done yesterday but still a little left to do. I am really not in the mood. Tomorrow we will be leaving around noon to head to Children's. We have to check in about 4. The plan as far as I know is that Raygen will be taken back to the operating room Friday morning around 7-7:30am to have her trach taken out and placed on the ventilator. I hope they keep her some what sedated the days following this because it is so uncomfortable to be on the vent and now she is big enough to try to pull it out. I'm so scared, sad, mad, every emotion you can feel I believe I'm feeling it today. Please keep Raygen in your prayers. Tomorrow our long awaited journey starts again and God only knows how it is going to play out. I just pray that Raygen feels the least amount of discomfort and pain as possible. I pray that Randy and I are able to comfort her and make her feel safe. I pray that the doctors know what their doing and take good care of my baby. I pray for Zoie, that she handles everything okay. You know when your a child and Christmas morning can't get here fast enough and you always wondered why your parents weren't more excited? I know why now. As a parent it comes too fast, before your ready, before you have enough money, before you have every gift bought. The same applies to Raygen's surgery. It came way too fast before I was prepared but this is Raygen's journey and I'm just blessed to be a part of it. I know she is ready and she is a survivor and a fighter. Thank you to everyone for all your love and support.

Two More Days

Two more days to go. I can't believe tomorrow is our last day at home before surgery. I am trying to get all my packing and cleaning done today while I have our awesome nurse Sasha to watch Raygen but my mind is else where. I'm so scared. I am not ready but I know Raygen is. Raygen has to have this surgery and now. Raygen is so strong and such a fighter and I know in my heart that she will be okay. But I am a mom and were suppose to worry. It's our job. Thank you for all your prayers and support and I will do my best to keep the blog updated as much as I can. My friend Sarah will also post especially on surgery day. Please keep Raygen in your thoughts and send your good vibes her way. Our journey begins whether I'm ready or not.

Playing & Almost Rolling Over

I had to post this video. Raygen is almost rolling over ;) I'm so excited. She is getting so big. I wonder what she will think when she does roll over? I hope her G tube doesn't bother her. Well 4 more days till we check into the hospital. I am so nervous and scared and have soooo much to do. Time flies when your having fun, right?

Count Down is on

Today we start the pre-admit hospital stuff. We stop Raygen's aspirin, we have to give her a bath every night now and no lotion, and we have to put some antibiotic ointment in her noise twice a day which she hates, lol. I also have to start packing and cleaning and getting Zoie all ready to move back in with my parents while we are away. I think the realization that this time it wont be cancelled that this time when we go to to the hospital our baby is going to have her 2nd heart surgery is sinking in. The whole airway issue is so scary and the unknown just haunts me. I am so scared to see Raygen on the vent 5 days before surgery. It's hard because she will be just like she is now but on a vent and I can't hold her and comfort her the way I can now. I know the hospital and doctors are just being cautious but the idea of being robbed of 5 days with her makes me so mad. Our last time at the hospital is all I can imagine and if this trip in anyway compares I don't know how I'm going to make it. I am not the calmest person at the hospital my emotions are off the charts and I tend to cry all the time and I tend to be very moody and snappy. I can't help it. Don't you feel bad for Randy now? lol! It is not easy putting your child's life in the hands of someone else and put your trust in them that they will do whats best for Raygen and have the best intentions for her when I feel like last time they didn't and that is why we have the trach. I know I have to let the past be the past and remember that this time will be different but it is so hard. I can't believe my daughter's first Thanksgiving she will be recovering from open heart surgery. This time last year we just found out about Raygen's heart in our 20 week ultrasound and had know idea how our life would change. I wonder where we will be this time next year. I dream of a family Thanksgiving with Zoie and Raygen and no trach and some wonderful trip to Leavenworth. That's what I'm going to focus on and believe that this time will be easier for Raygen and that we will all be home back together again by Christmas. I just have to remind myself that God loves Raygen more then I do and that no matter what happens it is in his hands and I have to give my fears to him. I pray with all my heart that Raygen will feel the least amount of pain and discomfort and have a quick and easy recovery. Trach or no trach I don't care just as long as we bring Raygen home that is all that matters.

God Gave Me You

Cause God gave me you for the ups and downs.

God gave me you for the days of doubt.

And for when I think I lost my way

There are no words here left to say, its true

God Gave me you.

As next week approaches I can't help but be sentimental. I love this song I heard and I think it fits how I feel exactly. God gave me Raygen. I have to believe everything will be okay and trust in God. Next week Raygen's journey begins again and I just pray it will be easier then the first. There are times during the day where I find it hard to breathe just thinking of next week and pray that no matter what that we get to bring Raygen home. Please keep praying for Raygen our journey is far from over and next week starts all over.

Erin

Happy Birthday Zoie

Zoie turned 8 on Sunday and I am so blessed to be her mom. Zoie has been so strong through all of this. She is such a good big sister and shows an amazing amount of love for Raygen. Zoie can tell you all about Raygen and her heart and her trach and she can tell some pretty funny "poop" stories, lol! Those of course are her favorite to tell. Zoie is probably one I worry most about. She and I have always been so close. Never spent more then a night apart from each other till Raygen was born, then we spent 3 months apart. I hear stories all the time about siblings of sick children and I don't ever want Zoie to feel "less then" because she is healthy and Raygen is not. I love Zoie so much and I feel guilty. I feel guilty that I can't spend as much time with her as I used to, that I can't jump the minute she needs me, that I feel I'm always saying "just a minute." I am torn all the time. I'm torn because I feel like I don't want to miss one second of the time I have with Raygen but at the same time I feel so sad that I'm missing moments with Zoie. I feel like Zoie has grown into a little adult through all of this that she has become wiser then her years and I pray that she always knows no matter what that she is just as important to her father and I as Raygen. We had a wonderful birthday weekend with Zoie. Randy took her skating on Saturday and I took her to Red Robin and Toys R Us on Sunday. I love spending one on one time with Zoie and as Raygen's surgery approaches it is even more important to spend that extra minute with her everyday because I don't know how long we will be gone this time. I pray not as long as last time.

Raygen has had a good weekend too. She is her normal, happy self thank God. Next week we are off to Childrens and I am so scared. I am trying not to think about it till Friday otherwise I might be one heck of a mess. We check in next Thursday at 4pm and then it all begins. Please pray that Raygen continues to grow and stay healthy till surgery. We are so close.

Erin