She's on the clock

First car ride to the office.
I think she enjoyed it. She liked looking outside.

Working hard.

She did AWESOME!!

So exciting to finally bring my baby to work. Were starting to fine our "normal." Today Raygen did so good. I was able to get a lot of work done and she played, sat in her bouncer, and I held her for about an hour or so nap. Such a good day and a awesome way to start our working schedule. She is such a good baby.

Only doctor appointment this week is the GI doc on Wednesday. Thank goodness. Other than that my girl and I will be off to work.

Shot and Cabelas

1st stroller ride outside a hospital to a STORE :)
We thought we would start with Cabelas. She checked out the fish.

And we checked out the animals.



Then we were ready for home. Raygen did AWESOME on her first outing!!!

Today was such a good day. Raygen had her rsv shot and an ot appointment which both went great. She only had to be poked one time and now we get a whole month off. WooHoo!!! I'm so happy she gets a break from doctors and shots and just being messed with. We decided to celebrate and take Raygen to her first store and what better store then Cabelas. As you can see she did wonderful! She just looked around and held on tightly to me, lol! She did get really excited that we were getting excited and it was so cute she got the biggest smile and her arms were movin like crazy. She is so dang cute. I was so nervous to take her out in public but our first venture went so well. I know we got a lot of looks packing around her feeding pump but I'm so proud of her people can look all they want. Plus she's so cute you can't help but look.

Lung Test and Cardio Update

Two tries for the iv in the arm and hand lead to...
an iv in the head. I hate iv in the head. I think I cried as much as Raygen.

Home after test.

Ready for some much needed Sesame Street.

So overall yesterday tests were not too bad. Besides having to have the iv in her head everything else seemed to go pretty smoothly. They were able to do Raygen's labs with her iv so she didn't have to be poked for that which was such a relief. She was pretty groggy yesterday for a long time due to having to be sedated. The lung test was about 20 minutes long where they injected contracts through Raygen's iv and then took pictures of her lungs while she was sleeping. The results were what we expected. Her right lung is getting 60% of the blood flow and her left 40% (you and I are 50 50.) This is not a good or bad thing. These are our base numbers and will have the test repeated in 6 months to help us determine when Raygen may need to go to the Cath lab to have her stent opened more.

We then went and saw Dr. Park and had an echo. Her blood work and everything came back great. She is gaining weight and length which is exciting. Her echo looked wonderful. We don't have to see him again till March so so exciting. Dr Park said now we can start taking her off the monitor more and try to start to treat her like a "normal" baby. We will start with OT and PT to try to help Raygen get caught up but other then that we get a break and just get to "be" for awhile. Dr. Park did remind us that most heart babies are behind in developing and he thought Raygen was probably around 4 months but by the time she is 2 she will be with her age group again.

So Friday we have the synagis shot and OT appointment.

Happy 10 Month Birthday!!!

Wild Hair Day!
Wild, Crazy Hair Day!!


"Whatever Mom!"

Play Time.

Can you see my teeth?

Happy 10th Month Birthday Raygen!!! Wow what you have been through is amazing. Two open heart surgeries, trake, trake taken out, g tube, caths, echo's, ekg, x-rays, iv's, pic lines, central lines, and the list could go on forever. You are so wonderful. You are such a good and happy baby for what you have been through. You have started laughing and making baby noises. You have 2 teeth. You are playing with toys and rolling on your sides. You love tv especially Sesame Street and Toy Story. You hate baths but don't mind sponge baths. You love to chew on things and were starting to give you a little baby food which you don't really like yet. You have started to like your pacifier which is exciting. You are truly our miracle baby and we love you beyond words. You melt my heart. You are my strength and you give me courage. You are truly a blessing from God and I'm lucky to be your mom.

So tomorrow is Raygen's big lung test. I'm soooo not looking forward to this appointment. I just hope everything goes smoothly. I hope they are able to get an iv and the blood work in the least amount of pokes as possible. My motto is "3 pokes and your done." So if they don't get it within 3 pokes we will be coming home. I feel anything after 3 is just mean. We will see Dr. Park (cardio) after the lung test. We check in for the test at 10am so I think it's going to be a long stressful day. Hopefully this will be the last test for awhile. We did increase her feed this weekend and we have been weaning off of meds so overall we had a wonderful, relaxing weekend. Just the thing you need before a long stressful week.

Please say a prayer tomorrow for Raygen.

G Tube Update

Don't I look cute?
I'm ready to go to Seattle.

I hate headbands mom!

Hanging out at home.

Ready for a nap.

Well her appointment went wonderful today. They said her g-tube looks great. I think they thought I was crazy to think something was wrong with it but I don't care I'd rather have reassurance its good then go on freaking myself out thinking something is wrong. So now we can have a nice relaxing weekend knowing her g-tube is good. So now we have her big lung test on Tuesday. I'm not looking forward to this appointment at all. Raygen will need an iv and blood work. I wish they could figure out how to do test without all the poking. Plus we have never had the greatest experience in Tacoma and that's where her test is. I'm going to do my best not to freak myself out over the next few days. Hope you have a good weekend. Our snow is finally melting away such a double edge sword. I love it and hate it all at the same time.

Erin

Laughing

I thought I would share this cute video of Raygen laughing. She is just starting to really laugh and its so wonderful to hear. I'm so glad I get to experience these wonderful milestones with Raygen. We are truly blessed.
Please wish us luck tomorrow we head to Seattle to get Raygen's g tube checked out. It has been a little pink the last few days and I have a feeling it is really bothering her. She is so sensitive when I clean it or mess with it which is new. So I'm going to be proactive and get it checked out before it gets to a point where were taking her to the e.r. I'll keep you posted.

Snow and Shots

No leaving today.

Down went a apple tree.

Worn out. Shots are tough.

So we had Raygen's 9 month wellness check yesterday and it went really well besides the shots. She is 20.4lbs (68%) she is 27"long (22%) and her head is 44.5cm(61%). Dr. Polley was very please with her growth. Raygen knew we were at the doctor's office for sure yesterday she clung to me like there was no tomorrow. One day I promise to take her some where fun when she gets in the car. Raygen is still behind in her milestones. She is rolling from side to side now, using both hands (her left more then her right) she is starting to make more baby noise, and she is starting to take things to her mouth. Raygen is so smart she follows me around all the time and if she knows I've left the room she gets upset and then when she sees I'm back she gets happy again. She has also started laughing which is so wonderful to hear. We are so lucky not to have the trake anymore. Raygen's voice is beyond beautiful music to us. We are going to start working with Raygen on tummy time and sitting up but we have to wait 6 weeks after surgery to make sure she is all healed and were almost there. She got 4 shots yesterday and had a pretty rough night. She was very fussy and she kept desating with a higher heart rate. We are trying to keep up on the Tylenol but the last dose she spit up so I'm not sure that's going to work. I just hope she has a good day today I know her poor little legs are sore. Our plan since the snow is just hang out with the fire going and make cookies and cat nap all day since no one really slept well last night with Raygen so upset. I hate shots.

Two Teeth

Play Time!

Pappa Time!

Nap Time!

I'm exhausted.

So Raygen is getting two bottom teeth!! I can't believe she is getting them both at the same time. No wonder she hasn't been too happy lately. The worst part is that tomorrow she won't be happy either. We have our appointment with Doctor Polley. It's Raygen's 9month wellness check and were finally getting her 6 month shots and flu shot. I hate anytime Raygen has to get poked. So please keep her in your prayers. I know she needs these shots to help protect her and keep her safe but I can't help but wish she didn't have to get them.

They also rescheduled her lung test :( for the 24th at 10am in Tacoma then we meet with her cardio doc after. Not looking forward to this at all.

Also please pray for Bryden our oldest daughter living in Texas. She has a cyst on her ovary and is going to need surgery. She was discharged from the hospital today and will see more doctors tomorrow.

One last thing, WE HAVE SNOW!!! I love the snow! It makes everything look way prettier then it is. We also found a tutor to help Zoie in school. I hope this will help her enjoy school more instead of dread it.

1st Tooth

So it's official our baby is getting her 1st tooth. It's her bottom right one! This could be part of the reason she is a little crabby. I have been using baby oral gel so maybe that will start to help. I tried to get a picture but unless she is screaming you can't see it and for some reason I don't like to take her picture when she is crying, lol. I will try to get one though. It is breaking through the skin. She is going to be so cute with her 1st tooth, but hey she is cute to begin with so this just adds to it. I just pray that this weekend she will start to get back to her normal happy self. We have two doctor appointments next week and one is her 6months shots and flu shot (I know were behind.) So I would really like her to feel good before we do the shots. We also see the GI doc. Thank you everyone for your continued support and prayers. We are so blessed to have so many people who care about our family.

We didn't go...

So I guess we only have ourselves to blame this time. We or actually I decided around 2am this morning that we were not going to do the lung test today. Randy has a horrible cold so he can't help with Raygen and I am not good when it comes to her having to be poked for iv and blood work so that was one reason. The other reason is Raygen was a wild women last night. I feel like I haven't slept in three days, which really I have a few hours here and there. She would not let me put her down at all. She was either screaming or I was rocking her sleeping. She is having a tooth come in, plus were weaning off meds, and who knows the other reasons why she could be so upset. I just don't like the idea of going into any procedure if Raygen isn't "herself." So this morning I called and cancelled. When we have the test I want both Randy and Raygen to be their best. So now were just waiting for them to reschedule it. Please pray that Randy heals up fast and that Raygen stays healthy and gets over whatever is causing her to get so upset.

Finding Normal

Sleeping the swing.
Watching tv with my pappa.

Napping with daddy.

Loving my bouncer.

Trying my pacifier.

So Raygen has been off oxygen since Thursday and has been doing pretty good. She has still be low off and on but seems to be in the higher 70's and around 80 most of the time. She does dip when she is sleeping but I think that is pretty normal. We have her lung test on Thursday which I'm not looking forward too and I have already pre-warned Randy that if I don't have a good feeling were not doing it. We haven't had the greatest experiences at Tacoma with test. I'm trying to keep an open mind though. I just hate that she has to get an iv and blood work. I am so ready for people to just leave her alone and let her just have a break from test and shots and doctors.

We are trying to start finding our normal. I have been busy getting my office ready for Raygen so we can go back to work soon! I'm so excited! Who would think someone would be excited to go back to work? I am a little nervous just how much work I will be able to get done in a day and take care of Raygen but I'll work it out. I just love the thought of us never having to be apart.

Raygen is really starting to get back to normal. I am so glad she is healing so nicely after surgery and I just pray that she continues to do well off oxygen. The only thing we really need to work on is her sleeping schedule. She likes to stay up supper late and sleep in. That won't really work when we have to go to work, lol!

Worn Out

Listen to the cutest little noises Raygen makes when she is sleeping. She does this all night too. So sweet. So we had 3 doctor appointments this week so we've been pretty busy. We get next week off and then we have appointments every week for a good month. I hope Raygen learns to really love car rides :) Plus, Raygen has been off oxygen for almost 24 hours and she's doing great!!!! Keep your fingers crossed!
So first we went and saw the trake doc. He said that she doesn't breathe completely normal due to one vocal cord still being paralyzed but he said it looks like she is doing good so he wasn't going to change anything. We will see him again in a year to check and see if her vocal cord is still not working.
Then we saw Dr. Park our Cardio doc. Raygen had an echo and ekg. He said everything looked good and he wasn't going to change her lasix (help her pee) or her blood pressure medicine yet. He did have us schedule a test in Tacoma to check the pressures in her lungs. She will need an iv for this and they put dye in her system then take pictures of her lungs. This will give us some base numbers to go off. So every few months we will repeat the lung test and if the numbers change it will be a sign that her stent needs to be widen which would mean we would go back to Children's to the cath lab. We will see Dr. Park again in a couple weeks.
Today we saw Dr. Polley Raygen's pediatrician. We just love her. She said Raygen looked great! So what a wonderful week, busy, but wonderful!
So moving forward we have Raygen's lung test which I'm nervous about. Any test that involves iv's makes me nervous. She will need to have some blood work done as well. We have her 6 months shots plus flu vaccine and Synagis shot coming up. We also have a GI doc appointment a oral therapy appointment and she will also start physical therapy in February. Man, she is a full time job! She is so worth it.
I'll keep you posted!

Erin

Having a taste.

Sleeping flat for a short nap! It's the first step to no more wedges :)
I love this duck.

"I don't know about this dad?"

"mmm, Maybe!"

She only took about 2 bites if that, but hey its a start!!

Good times with pappa!

Lots of doctor appointments this week. So look for updates. Hope you all had a happy New Year!