Happy Anniversary!

Happy 5th Anniversary to my favorite husband!

I love you!

7 months old and so much to be thankful for!

It's crazy to think that Ry is now 7 months old! This time last year I was buying my first pair of stretchy pants! She has been up to so much lately. She loves to sit up and play, laying down is for babies and she no longer likes it! She's eating all kinds of baby foods, squash is her favorite and peas will nearly make her throw up, she knows what she likes and what she doesn't. Her new best buds are Hondo and Tobi, she just chatters and swings her arms around when she sees them. She just can't get enough of her puppy and kitty. We're sad that the weather is turning colder because we'll miss our afternoon walks. She LOVES to be outside!

We had an exciting holiday weekend. We spent our time with family and lots of Aggie friends. Rylynn is really starting to enjoy playing with her cousins as well. Right now there is just a lot of grabbing and talking, but it won't be long till she's chasing after them all.
We spent Thursday and Friday in College Station with the Martinka's and the Riojas' eating lots of turkey and watching our Aggies.

Rylynn enjoyed the tailgating, but it wore her out!

Friday we went and took a few pictures around campus, she was in such a good mood! I think I will do all of her pictures outside from now on.

Saturday was Rylynn's big day! Although she was baptized when she was only minutes old, Saturday we were able to have a baptismal ceremony for her with our families. It was such a nice feeling to formally present her to God. She was great through the whole ceremony and was mostly just interested in taking the Priest's paper out of his hand the whole time. Here are a couple of pics from the day.

Rylynn with her two Godmothers. I know they will be a great inspiration for her Christian faith.

This weekend Gilly and I are looking forward to celebrating our 5 wedding anniversary! It will be so much more special because this year we will get to celebrate as a family. We also can't wait to get our Christmas tree up and the house ready for the Christmas season!

With love. . .

Halloween Fun!

We spent Rylynn's first Halloween in College Station. On Friday night we were able to do some trick or treating among fellow Aggie tailgaters. It was a lot of fun and we were joined by ALL of Rylynn's cousins! She only lasted in her outfit long enough to make it to a couple of RVs and then we had to call the sunflower quits while we walked around.

Rylynn was not interested in pictures, she was ready to get the Trick or Treating started!

Look Rylynn, Jackson kept his costume on... let's try that next time!

This little yell leader was showing true Aggie spirit!

A visit to the Pumpkin Patch!

What an exciting week! We've spent the week here in Lampasas and are feeling right at home. I don't have much time to write about the fun we've had, but it's been great! I wanted to include a few pics though.

She loves her cereal!

It's hard to catch her smiling with all those fingers in her mouth!

Look at my big girl, she's sitting up all by herself!

Hope you all have a great weekend!

With love. . .

Sorry it's taken so long...

Sorry it's taken so long to get a new post up here, but you know what they say "no news, is good news".
Two weeks after Rylynn's Glenn procedure and she continues to amaze us. We were released from the hospital on Monday the 28th, just 4 days after her surgery! We stuck around town until Sunday and then headed back here to Austin. Today was our follow up with the Cardiologist here and things looked great! The echo revealed no fluid in her chest and great heart function. And her sats were holding steady between 85 and 87... woo hoo!
Rylynn weighed in at 14lbs 8 1/2 oz. And now that she seems to have returned to her pre surgery eating habits, we are going to start cereal. We can't wait!
Dr. Rowe says to enjoy getting moved to Lampasas and that he doesn't need to see us back for THREE MONTHS!! We are so excited! Of course, because it's stinkin' flu season, we have to come back once a month for an RSV shot, but we can handle that.
Thank you to everyone for the thoughtful emails, phone calls and texts, we know that Rylynn is so loved by our friends and family. It makes us feel like really lucky parents.
I look forward to posting fun new pics soon so stay tuned!
With love. . .

Just 24 hours later

What a different experience it's been this time around. Here we are just a bit more than 24 hours after surgery and we're already out of the ICU. We were moved back up here to the 8th floor this afternoon. We are making sure that our nurses keep a very close eye on Rylynn, but she's doing amazing. I can't imagine any adult undergoing what she's been through and being where she is now. We've come to the floor with only a bit of oxygen, one IV and her pacer wires (wires connected directly to her heart in case they needed to shock it).

Last night was not as bad as Gilly and I thought it might be. Post-op these guys suffer from terrible headaches and the nurses prepared us for the worse. She did scream hysterically every 15-30 minutes for a few hours yesterday evening, but by midnight or so she had gotten through the worst of it. She has been resting really comfortably today, but she still hasn't been able to muster a smile yet.

We were told to expect another wave of pain tonight around midnight (called the "twilight hour"), but if we can get her through till morning, we should be on the downhill slide.

Luckily, she's been eating great and looks great.

I know I never posted pictures of her after her first surgery, but I've included one so that you can truly see the difference that we've experience. I really can't believe it's been so smooth. Please pray that she doesn't feel too much pain and her body heals quickly.

Please also include a few extra thoughts for some of our little heart buddies here. We saw one little guy that was born days before Rylynn with the same condition and he is still here in ICU trying to fight through. I hope they can get him feeling better soon so that his family can take him home.

Here's what we saw the first time around.

And here's what she came out like yesterday. Can you believe she looked so incredible after surgery!!! Of course this is after they had taken out her breathing tube, but she looks wonderful!

Here how she looked when we headed to the 8th floor.

I hope to post more great news in the coming days. Thanks for sending all your love and prayers to Miss Rylynn. It's helping us all through this.

With love. . .

Quick Peek

Gilly and I just had a "drive by" shot of Rylynn. She looked great! Her cheeks were rosy and had great color to them! We can't wait to get back to her room to see her in an hour or so.
The doctors confirmed that they did not have to shave her head for anything... whew! :)
Please pray for a speedy recovery!
With love. . .

Out of Surgery

The surgeon just came by to let us know that he has completed his repair and Rylynn is doing well. They have taken her off of by-pass, warmed her body back up and completed the echo. Everything looks just as they had hoped and the pressures and sats are good. We are hoping to get a quick peek at her as they wheel her to the CVICU and then should get to go back to her room in a couple of hours.
We can't wait to see our little girl! We want to be by her side when she wakes.
With love. . .

In Surgery

Rylynn was taken back this morning around 8:30. We should be receiving updates from the OR every hour or so. It will be late this afternoon before she's out and I will try to let you all know how she does. She gave us a big smile when we sent her off this morning, it was beautiful!
I'll post again late today, hopefully with some good news.
With love. . .

Update

So we're not where we thought we'd be right now. After a loonngg day of waiting, we moved to pre-op 3-1/2 hours late (3:30 pm) and then were told that our surgery would be delayed until tomorrow. The first case this morning had a few complications and then ran over by several hours. The terrible part of today was having a baby who had not eaten since 5:00 this morning, she was miserable! The blessing in this, is that Dr. Forbess will be nice and fresh tomorrow morning. We will be first case tomorrow so hopefully Rylynn will eat well this evening, rest well tonight, and by the time she realizes she's hungry she'll be going under.
We had a small scare last night when Ry had a little blood in her stool, but Xrays did not show anything to be concerned with and today her soiled diapers have been normal. This meant she missed a feeding last night and between labs and Xrays, we didn't get much rest. So Gilly, Rylynn and I are all hoping for an uneventful night so we can get a little sleep for tomorrow's big event.
I will do my best to keep you all posted on her progress tomorrow.
With love . . .

Ready for Tomorrow

What a busy couple of days. As always, Rylynn wanted to do things her way so yesterday instead of going home after our exam, echo, and Xrays we were admitted. The Cardiologist was worried about her diving oxygen levels and wanted her to be monitered and to be put on oxygen. We had a terrible time with IVs again. They tried for some time on Monday night and were unsuccessful, then this morning they called in the IV team and still no luck! Poor Rylynn was a trooper, Gilly and I however, were very shaken. In the end, they decided to put in her IVs today after she was under anesthesia for the Cath.

The Cath procedure went well. Pictures of Rylynn's heart showed no surprises so the Docs are ready for surgery tomorrow. We have been bumped to the second case of the day so we're expected to take her back around noon. She is finally resting now and has been able to take down a couple of ounces of formula. I hope she rests well tonight. We couldn't be prouder of the way she has handled the last couple of days. She is truly our little rockstar!

It has been nice to see so many familiar faces here. We were surprised that so many people remember us, but they do! And they are all so happy to see Ry doing so well and getting so big.

I will try to post tomorrow as soon as we know how she does. We don't expect to be in our ICU room until atleast 6:00 if not later. Gilly and I are getting ready for another night on THE couch in the room. We are actually looking forward to the recliners in the ICU.

Here are a couple of pictures from this last weekend and here in Dallas.

Rylynn had a blast at her first Aggie game! She made it till almost half time!

I think she's the cutest girl on campus!

It's a rough life here at the hospital, it wears you out!

Please say an extra prayer for Rylynn, tomorrow is a big day.

With love. . .

Nevermind!!

Nevermind. We are back on for the 21st, 22nd and 23rd. The surgeon said he reviewed Rylynn’s chart and given her oxygen levels and that she is on oxygen, he wants her in here sooner than later.
Good thing I haven’t unpacked just yet, but oh the craziness!
Please pray for little Ry as she undergoes each procedure and her mom’s sanity through all of this. Check the blog this week for updates.
With love . . .

Big News!!

I just got a call this morning from Children’s Medical Center…
Rylynn’s surgery has just been delayed by two weeks. Talk about crazy! At first I was mad, then realized there is obviously another little one who needs the surgeon more than us on that day. We are rescheduled with a similar schedule in two weeks.

Monday, October 5th: Cardiologist appointment, sedation echo and EKG, PreOp work up
Tuesday, October 6th: Cath procedure
Wednesday, October 7th: Surgery (Glenn Procedure)

Gilly and I have spent the last week packing and preparing things for us to be gone for two weeks. I guess I better begin emptying bags!! The most difficult part is that emotionally we had prepared ourselves and were ready for the week that lay ahead, now we’ve got to patiently wait two more weeks.

Here's our big girl in her new chair! She likes to be part of the action in this thing.

A new trick while changing Ry's diaper is for her to "scoot" away from you.

She thought it was quite funny that she scooted herself under this pillow!

We are still looking forward to our weekend in Aggieland and will surely have some new pics for you so check back soon!

With love. . .

Rollin', Rollin', Rollin'

Last night I put Rylynn on her tummy, hoping to get atleast five minutes of play time before she'd have her screaming fit, but she out-smarted me. . . She seriously hates tummy time so much that I guess she decided she'd rather roll over than lay there. She pushed herself over and if it weren't for her arm being a big fat speed bump she would have made it the whole way. I'm worried that with the screaming reaction she had from the crowd, she may never want to do it again. The poor kid had no idea what was going on as she lay there in a very akward and new position while everyone around her screamed. I think to say the least, she was frightened!!
We visited our Cardiologist yesterday and received a great report. Her oxygen levels, though a little low are still holding steady and have not dropped in the last 4 weeks! She received a clean bill of health and just has to stay that way for the next two weeks and surgery will proceed as planned. The nurses had fun with her at this appointment, as she gets older she wants to wiggle, talk and pull on everything. It makes each check-point a little trickier.
Rylynn is looking forward to her Aunt Caity coming in from New York this weekend and has big plans for next weekend. Before surgery, while she's feeling good Gilly wants to take Rylynn to an aTm game. So on Saturday the 19th Rylynn will put on her maroon and come to the game with me and Gilly. We are glad it's a night game so the temperature won't be miserable, but we honestly don't expect her to last too long. My mom is going to be on standby and meet us at the gate to take her back to the tailgate when she's had enough. I just hope she has a good nap that day! I can't wait to post pics of the big day so stay tuned.
I am hoping to post again before surgery and will keep updates here on the blog when we're at Children's.
With love. . .

A Very Busy Week

Tomorrow Rylynn turns 4 months old! It has passed so quickly, yet Gilly and I really can't remember our lives before her. We had some fun with her the other night after her bath. Here are a few of her crazy hair pictures! I know this is cruel, but I can't help myself, just look at that hair!

Here's a cute after-bath picture to make up for that!

Below is my first attempt at posting a video, I hope it works. I don't think I have the sound figured out yet though which is a shame, because her giggle is amazing. Notice how she stares at the camera. Every time I get the camera out, she stops whatever it was that she was doing and won't take her eyes off of it.

Aside from all this bath business, Gilly and I also have some exciting news. On Friday, we closed on a home in Lampasas. We love the house and can't wait to get settled in it after her surgery. It needs a little updating so we will try to get a little painting done along with replacing some carpet and fixtures. I love a good home improvement project, but realize that tearing out paneling and keeping a four month baby entertained is not easy, so some of our projects will just have to wait. Gilly has already tackled a lot of the demolition and is making great progress!!

Another exciting announcement comes after a year and a half of studying and 9 exams later. I finally received word this last week that I passed my final exam so I am now a licensed architect! It is a huge relief and something that I have worked very hard for.
We have a couple of doctor's appointments over the next two weeks so I'll let you all know if there are any changes. Keep our sweet girl in your thoughts!

With love. . .

Finally some news!

I received a call from Dallas today and here's what we have scheduled. We will have an appointment with our Cardiologist at Children's, Dr. Lemler, on September 21st. Then on Tuesday, the 22nd, we'll take Rylynn in for the Cath Procedure. The doctors will use this to carefully and precisely measure the pressure and blood flow in her heart. They will also do all of her pre-op work up at the time. We will be discharged and be able to spend the night before surgery with her. The morning of the 23rd, Rylynn will be admitted at around 6:30 in the morning and she should be in surgery by around 7:30. Dr. Forbess will perform the Glenn procedure on her which is the second of her three surgeries. To explain the surgery in one sentence, post surgery all the blood coming from the upper body is sent to the lungs so more blood with oxygen is coming back from the lungs to the left side of the heart.
I write this all so matter-of-factly, but even as I type I find it hard to swallow and my eyes start to tear up. Ry is swinging in her swing taking a cat nap right now and I worry that she will miss her swing while we are in the hospital, along with her bouncy chair, our rocking chair, and all the daily activities that we enjoy. I know that this surgery is necessary and will help her body, but it's tough to think about.
Please lift us up in prayer as we begin to prepare for this next surgery.
We love you all!

Our Silly Girl!

Rylynn has learned a few new tricks over the last two weeks. No she still isn't rolling over, but she's keeping us entertained with her silliness. She has finally found her feet!! Of course, I still do not have a picture to document this, because she let's go every time I come near her with the camera. She has realized that she can reach down and take her socks off, no more having to kick them off the hard way.

And speaking of socks, I keep Rylynn's little socks in a bag and had it out on the bed while dressing her yesterday. While changing her diaper and getting her dressed, she became obsessed with the bag and the crinkley noise it made. I'm pretty sure that's why they have to put those big warnings on plastic bags that say "This is not a toy". By the time I had finished getting her dressed, she had scattered most of the socks out of the bag and had her arm completely in it!

And for her final antic, Rylynn has become a bubble monster! The past two days, she has literally waken up and fallen asleep blowing bubbles! It is really entertaining.

The following picture I posted just to prove how well she is growing... look at the size of that gut!

I have spoken with the surgeon's office and it looks like there were some scheduling miscommunications between our Cardiologist here and the folks in Dallas. I have a feeling we're getting pushed back even farther. I am anxiously awaiting a call from someone. Gilly and I are just concerned that if they put us off too much longer, she is going to quickly out grow the first procedure. I really hope to know something soon.

With love . . .

My First Haircut!

Yes, our daughter is only 3 months old and she's had her first haircut! I had an appointmtment (my first time back to the hairdresser in 4 months) on Saturday and took Rylynn to the salon to meet Amy. Jessica came with me so she could keep the munchkin occupied while I was getting my hair cut. While I sat under the lamps with foil in my hair, Amy recommended that we snip the mullet hairs off the back of Rylynn's neck. I called Gilly to see if we could do it and he said... go for it! Jessica grabbed the camera and Amy grabbed a baby cape. Rylynn did well, but was extremely upset because she could not put her hands in her mouth with that cape on, she just kept flapping them up and down.

I've posted a few pics, please keep the comments nice, if I had known we would be documenting her first haircut I would have done it before I got all dolled up in foil!

Here's a beautiful picture of her sleeping.

And one showing her wild side. She's going to be trouble!!

I'll post again soon! Hope everyone is elnjoying the last bit of their summer!

With love . . .

Still no news

Although I still have no news on Rylynn's second surgery date, I thought I'd write in since it's been a while. The big news since the last time I posted is that I finally got a giggle out of the little munchkin! On Wednesday afternoon, we were talking silly to each other and with a few bounces on the bed she let out an adorable giggle. Of course her mouth was full because of the hand that she had in there, but it was unmistakably a giggle.
She loves putting everything in her mouth now and it all comes out soakin' wet. The pediatrician says this may mean she'll be cutting teeth in another month or so. We are still working on rolling over. And when I say we, I mean that Gilly and I try to push her legs over slightly to show her how much fun it would be, Rylynn however, could care less. She is in no hurry to start rolling over! I think it's because she knows if she rolls she'll just be stuck on her tummy and she is not a fan of tummy time.
I hope to post again soon with some information about the surgery, until then just keep us in your thoughts. Ry is doing so well and I know that it is because of all the prayers that have been sent our way.
with love . . .

Just another day at the Doctor's office!

Here's a visual of what we do on a weekly basis. Rylynn went in today for a check-up to see if the meds and oxygen have helped her oxygen levels come up.

Last week we started a new medicine three times a day and we have started her on oxygen at night. I've always heard parents say that kids require so much junk to pack up for just an overnight stay, but you haven't seen anything until you have to add oxygen tanks and tubing to the suitcase!! She's doing fairly well with it although we're still in the adjustment phase. She still squirms at night and tugs at the tubing. I sleep next to her and attempt to adjust it throughout the night as she pulls and dislodges it.

So back to today's appointment... the doctor was happy that levels are holding steady so he put a call into Dallas to ask for a surgery date in approximately 6 weeks. This should fall around the beginning of September and Rylynn will be right at 4 months old. While Gilly and I know that this next surgery is inevitable and in a way we're happy to get it over with, we still aren't quite ready. I guess we'll have the next 6 weeks to prepare ourselves emotionally for the big day.I'm happy to report that Rylynn is continuing to give us more and more smiling faces and is facinated with her new friend Ramon the Penguin. She loves to talk to him! She also spends lots of time in her swing! (It's the only way that we can get anything done!)

As soon as the surgery date has been set, I will pass along details. In the mean time, keep Little Ry in your prayers!

With love. . .

Happy 4th of July!

Rylynn just wanted to say hi and hope everyone had a Happy 4th of July!!

Two Months Old!

I can't believe Rylynn turned two months old yesterday! I snapped these pics yesterday, the one with her and Gilly is just my favorite!

We had our follow-up with the cardiologist today. Seems that unfortunately, Rylynn's saturation levels have gone down even more. Gilly and I were afraid of this. We have begun to notice the constant blue tint in her upper lip. While it's not very noticable to others, the Doc agreed with the change. He was surprised to hear that she is still eating great and she even gained a pound in the last two weeks. This all means that he has put a call into Dr. Forbess, our surgeon in Dallas so that he can get his opinion on proceeding with the second surgery. Although she has nearly reached the 10 1/2 lb. minimum, she stll a little younger than they'd like. (It has to do with reaching a matyration level of her lungs.)

We should know something next week and I will try to keep you all updated on the options they present us.

Say another little prayer for us.

With Love . . .

7 1/2 weeks!

Man, having a baby around takes more time than I could have imagined!
I am finally getting around to sharing some recent pictures of our sweet little thing with you all. Here's a brief update on how we've been doing...
Little Miss Rylynn is not so little anymore! She is eating and growing great and now weighs 9lbs-4oz. In the last couple of days she has just starting to smile and coo back at us so I'll have some great pictures with that big smile soon. Believe me, it's a smile that just melts your heart. These past 7 1/2 weeks have passed so quickly and she is becoming quite a character, she loves to be held all the time and by anyone! She is also a mover and a shaker, whether it's in your arms, in the carseat or in the stroller, you have to keep moving constantly. Although she's happy most of the time, she will not hesitate to let you know when she needs something. And let me tell you, patience is not one of Rylynn's greater personality traits! She has progressed from the crazy duck cry though and we've moved on to your average top of your lungs scream. We just can't help but to love her to pieces though!
Although we are tested each night because Little Miss likes to party till about 2:00 am! We are going to try some tough love tactics this week to adjust her sleeping schedule, but I'm afraid we are talking tough and won't be able to change her if she doesn't want to! :) She is a determined little thing!
That tough personality has really helped her to pull through. Our doctors have been happy with her growth and heart function and we are battling just one issue with her oxygen saturation levels. We'll have a check up again in two weeks and hope they have gotten better. Until then we'll keep an eye on her and hope she keeps growing.
Enjoy the pictures, I'll try to share them with you a little more often. Keep us in your prayers and we'll keep you posted.

With love . . .