Blog Update!

I am terrible at keeping my blog up to date. I apologize! I have decided to make this a family blog instead of just focusing on Caelyn's health issues. That way baby Bowen doesn't feel left out. ;P
Bowen was born August 20, 2012! He is the perfect addition to our little family. He is big and chunky, and absolutely healthy! What a blessing!

Caelyn is absolutely loving her little brother. She has never shown any signs of jealousy, which is something I was worried about! She loves to kiss Bowen and pat his back to help me burp him. :)
Right before Bowen was born, Caelyn had another heart check-up in Dallas. We made the 4 hour drive (while I was 36 weeks pregnant!) to her cardiologist for an ECHO and EKG. We didn't get great news. The pulmonary valve has severe regurgitation, causing the right side of her heart to enlarge. Also, her left pulmonary artery is either kinked or not growing (the one that had been smaller at her last few checkups) so Dr. Kao wanted us to have a heart catheter done to see what is wrong with it, and possibly balloon or stent it open. We scheduled it for November 12, but Caelyn was very sick with a cold and an ear infection that she had for over two months, so we had to cancel it. We finally tried a different antibiotic that healed her ear and her cold, so we rescheduled the heart catheter for November 26. I will update when we find out what's going on. Caelyn will definitely need another open heart surgery in the future to replace the valve. We are definitely not looking forward to that.
At the end of October, we flew to Columbus, Ohio to have Caelyn evaluated at the 22q Clinic at Nationwide Children's Hospital. We had a full day of appointments on the 26th. We saw a genetics doctor, an ENT, a plastic surgeon (for her submucus cleft palate), and a speech scientist. The plastic surgeon said that Caelyn is a good candidate for not needing her cleft surgically repaired, which is an awesome thing to hear! Her speech has absolutely no nasal-y sound right now, and hopefully it stays that way. The speech doctor told us Caelyn is only mildly delayed. We are very happy with that news! While we were in Ohio, we met many other 22q families and they were all so sweet! We also drove to Cleveland to visit some of Darren's extended family. They had never met Caelyn, Bowen, and I before! We had a great trip, but we were very glad to be back home! A long trip away from home is not fun for two little babies.

                     Caelyn was an LSU cheerleader for Halloween!

                    Being silly with Mommy after her bath. :)
A few weeks ago we bought a new car. Well, it's a used one but new to us! It's a 2011 Chevrolet Traverse and we love it! Our Impala was a little small for two kids, so we wanted something bigger. We are definitely glad we went a little bigger. It's so much easier to haul two kids and a stroller, plus groceries or whatever else around. It will also make our trips to Dallas much easier.
We are very excited about the holidays coming up! We have no plans for Thanksgiving (as of right now), but hopefully we will get to enjoy some turkey somewhere! Christmas with two little ones is going to be a blast this year. I can't wait to start Christmas shopping for my little boogers! We have no idea what we are going to get them, but we've started thinking about it. We even went to Toys R Us recently to get a few ideas. Maybe this weekend we will start. :)
Well, I'm pretty sure my next update will be after Caelyn's heart catheter, so I will post again soon. Thanks for reading! Love, Ashlee, Darren, Caelyn and baby Bowen.

Been a long time!

Wow. Has it really been 7 months since I last posted? So much has happened. I'm really going to try to keep up with posting more often! I will try to recap everything that's happened since my last post...


My last post mentioned the geneticist finding a knot in Caelyn's throat. We went to an ENT a few days after and he diagnosed Caelyn with a submucous cleft palate. He wanted the surgery done as soon as possible (before she started talking). So we scheduled it for December 9. But during his exam, Caelyn was crying as he was shoving the tongue depressor down her throat, and she threw up all over me/him/the floor. He actually told her "oh shutup, it's not that bad".............yeah.........so I cancelled that surgery! I didn't want that man touching my child again! So I found a new doctor who was highly recommended to me by a few people. We went and saw him in the middle of December, and he confirmed the submucous cleft palate. He wanted to do the surgery soon, but he said Caelyn needed to be off the bottle and pacifier before surgery. So we scheduled the surgery for around the end of February.
At the cardiologist check up in November, Dr. Kao told us that Caelyn's pulmonary valve was still leaking. She didn't seem too concerned, but told us she wanted to recheck in 4-6 months. We scheduled a check up for the beginning of April.
Caelyn's first Christmas was great! She loved the Christmas tree and Christmas music. :)  She got lots of great gifts from the family.
On January 1, 2012, I took a home pregnancy test...it was positive. We hadn't been trying for another baby just yet, but I guess God had other plans. :)  Of course, I was worried sick that something would be wrong with the baby. My OB sent me to a high risk doctor to have regular check ups on the baby. At 12 weeks, we had our first ultrasound with the high risk doctor. It was an NT test (to check the thickness of the back of baby's neck; thicker necks can indicate heart, chromosome, and other abnormalities). Our little peanut looked perfect! The doctor also told us it looked like a little boy. :)  At 17 weeks, I had my anatomy scan. Baby is definitely all boy! All of his organs looked perfect, and from what they could see of the heart, it looked great too. At 23 weeks, we had an echocardiogram of the baby's heart, and the doctor said it couldn't look more beautiful. We chose the name Bowen Alexander for our little man. I am now almost 29 weeks pregnant, and so far Bowen is healthy and VERY active! We are excited to meet our little guy in August!
After learning of our newest addition, we thought it would be best to finally start looking into buying a house. On February 27 (yes, my birthday :) we found a beautiful, updated home in Bossier City. We put in an offer and was accepted! We closed on April 16. So far, we love our new home!
We ended up rescheduling Caelyn's palate surgery, because she just wouldn't wean off the bottle. We were successful in taking away her pacifier, but she just would not give up the bottle. So we scheduled it for April. 
At Caelyn's cardiology check up in April, Dr. Kao told us the pulmonary valve leak was still there and that it was now causing the right side of her heart to enlarge. We were shocked. This sounded terrible! She told us she wanted to keep seeing Caelyn every 4-6 months to keep a close eye on the leak, and that Caelyn would need the valve replacement sooner than we originally thought. Our next check up is August 3. I am very nervous as to what they will find and when we should expect to have the valve replaced.
On April 22, we went to 22q at the Zoo in Fort Worth, Texas. This event is where families of people affected by 22q11.2 deletion syndrome meet to give support and have a little fun. We had a great time, and it was amazing meeting other children affected by 22q. We talked to a lady about Caelyn's submucous cleft palate. We ended up deciding that we didn't want a doctor that didn't specialize in 22q to do her surgery, as children with 22q have a slightly different anatomy of the mouth. If we were to let a doctor who wasn't knowledgeable in 22q do Caelyn's palate surgery, she would most likely need it repaired again eventually. So we are going to see a 22q team in Columbus, Ohio for them to completely evaluate Caelyn and tell us what they think would be best for her. We haven't scheduled this evaluation, but we are thinking around October is when we will go. While we are there, Darren wants to visit some of his family who live near Columbus, so they can finally meet Caelyn and Bowen.
So I think that pretty much sums up everything that's been going on. I will try to start posting regularly, and I will add pictures next time. :)  Thanks for reading! Love, Ashlee, Darren, Caelyn, and baby Bowen.

Heart Update

We drove to Dallas yesterday for Caelyn's heart check up at Medical City. Her O2 sats were 96 (yay!), we did an EEG and an echo. She was so tired that she slept during the entire 45 minute echo. :)  Everyone kept commenting on what a wonderful baby she was, and how sweet she is. Well...duh. ;)  Anyways, Dr. Kao told us that Caelyn's left pulmonary artery is about 1/3 smaller than the right one, and it also leaks a bit. She said it will eventually need to be replaced (probably in her teens), and that most likely be another open heart surgery. I was thinking they would do it through a catheter, but Dr. Kao said that if it's the original valve they are replacing, they would need to open her chest up. Any consecutive valve replacements after that would most likely be through a catheter. But, we will just cross that road when we get there. As of right now, Dr. Kao said Caelyn looks great, and the valve should not affect her activity levels or her heart function. So we are pretty happy about that.
This past weekend, Caelyn was not feeling good, so I took her to the doctor. She ended up having double ear infections and a cold. So my sweet baby has not been feeling good this week. This is the very first time she has gotten sick. Hopefully in a few days the cold will start clearing up. She is on antibiotics for the ear infections, I think her ears already feel better. 
At physical therapy today, the PT was very impressed at how much Caelyn has done in the past week. She is sitting up on her own from laying down, and she is no longer rolling across the room. She does this kind of inch-worm type crawl. She gets up on her hands and knees and lunges forward, lands on her stomach, and gets up on her hands and knees again. It's so cute. The PT also spoke to a speech therapist and wants Caelyn to start that soon. So next week we will to PT and ST.
We are ready for the Holidays!! I can't wait to start shopping for my sweet baby girl. She is so spoiled. Haha! I've decided I'm going to hand-make as many gifts as I can. I've already made a few things...can't post it incase that person reads this. ;)
Well, anyways, here are a few cute pics for you to enjoy.

 We played dress-up one day...this is my pretty girl in her Christmas dress.

Caelyn sleeping during her echo at her heart check up.

Amazing Girl!

*I finally have my new computer, so I am able to update my blog more often now! Yay!*

Caelyn is such an amazing little girl. Her smile melts my heart everyday.

We went to the geneticist on Tuesday. She just got our family history and examined Caelyn to see which characteristics of 22q11 deletion syndrome (also known as DiGeorge Syndrome, Velo-Cardio Facial Syndrome (VCFS), and other names) she has. Caelyn has the facial features (prominent bridge of the nose, round nose tip, upper ears are folded, small head, ears stick out), some developmental delays, and she has a knot in front of her uvula which causes soft palate problems. That would be our answer as to why Caelyn has feeding issues. The doctor is referring us to an ENT for the soft palate problem.

Caelyn had her evaluation for physical therapy today. The therapist was very impressed! She said she is only about a month behind developmentally. Her fine motor skills are great, but she has a weak upper body due to the muscles and bone being separated when she had her open heart surgery. So because of that, she cannot pull up, crawl, or sit up from lying down.  I am so amazed by my little girl. She just keeps on showing us that nothing can hold her back.

We go to the cardiologist next week to check up on her heart! Pray that things look good! :)

Enough of the medical stuff! Haha! Caelyn went trick or treating on Halloween. We went with my older sister and her two little girls. Caelyn got lots of candy that she shared with Mommy and Daddy! ;P  She was definitely the cutest little giraffe I have ever seen.

Caelyn's great grandma (Memaw) passed away October 12. She loved Caelyn so very much. Everytime we went to visit Memaw she would just light up and get the biggest smile on her face. It makes me sad that Caelyn wont get to know her Memaw, but I'm sure she is watching down on Caelyn from up above.

   This is Caelyn visiting Memaw a few days before she passed away.

And here are some more adorable pictures of my gorgeous girl. :)  Enjoy!

                  Look at my big girl holding her own bottle!!!

                          Helping Daddy with the laundry.

           Nothing better than playing in a pile of newspaper!!

                              Looking pretty at Memaw's funeral.

                                  Sweet girl!

   

                         Look at that gorgeous smile.

Been Awhile!

Things have been busy, hence the no updating lately! Caelyn is rolling all over the house now, getting into things. She doesn't crawl yet. She got her first tooth about a month ago! No more teeth yet...at her last doctor visit, she weighed 15 lbs 11 oz. Getting big! :)  We are getting ready for all the holidays. We are so excited! Caelyn is about 8 and a half months old, and is so funny. She is always making us laugh.
This next month is full of doctor visits. First one is the geneticist. We are very anxious for this appointment, because we will find out a lot more about Caelyn's specific chromosome disorder. We will also get bloodwork done to find out if there is a chance of passing a genetic disorder to our future children. Next, is cardiology. Dr. Kao will look at the leaking pulmonary valve to see if it is any worse. We go to the immunologist at the end of the month to recheck Caelyn's low t-cells. If they are still at a low count, the doctor will have to decide what type of treatment she will need. So pray for good news from all of these doctors!! Love from Caelyn, Ashlee, and Darren.

Post-Surgery :)

           Being a little ham!! Gorgeous girl!

            Showing off her new leggings.

     Snuggling with her bear from Aunt Kathy, Uncle Bubba, and cousins Nikki, Lee-Joseph, and Anna

                                                           Love green beans!!!

Well, tomorrow will be 4 weeks post-surgery. Caelyn is doing great! We are back in our old routine, and she is slowly becoming herself again. Since surgery, she is more whiny/cries more, but her doctor said it's probably because the surgery/recovery was traumatizing, and that she will be back to normal again soon.

This past Tuesday, we went to Dallas for her two week post-op check up at the cardiologist. Dr. Kao said everything looked good, except that her pulmonary valve leaks and she may or may not need a valve replacement in the future (like, when she's a teenager). And they are starting to do that through a catheter, so hopefully no more open heart surgeries!!

Caelyn has finally started to eat solid foods. She has tried sweet potatoes, applesauce, and green beans. She is slowly starting to learn how to swallow her food. I love feeding her! I have been making her food, and it's so fun! I love knowing her food is healthy and organic! And it's so much cheaper! I'm estimating I have saved around $40 so far. I think everyone should try this!

We are going to attempt cloth diapering! I'm actually pretty excited about it, because they are SOO cute!! Haha! We have realized that disposable diapers are so very expensive, and are trying to cut back on costs. So hopefully by making her baby food and cloth diapering, we can cut back some.

Surgery: DONE!!

Last picture taken before we handed her off to the surgery nurse.

                                     

First picture taken after surgery.

 

All of her wires and tubes. My precious baby is so sweet. :)

 

Oxygen levels post-surgery: 100%!!!!  :D

The surgery was originally scheduled for today, July 26. I got a call from Dr. Mendloff's nurse (Dr. Mendeloff is Caelyn's surgeon) on July 21 around 4 pm asking if we would mind coming in the next day for pre-op, and doing the surgery on Sunday, July 24. Darren was away for annual training for the National Guard, but was supposed to come home the next day. So I called him to see if he could come home then, and we would leave the next morning for Dallas. He was able to leave a day early, so he came home, we packed, and got a good night's sleep. Woke up around 6:45 Friday morning, fed Caelyn, got ready to go, and left the house by 8:30.

We arrived at Medical City Children's Hospital about 11:30, and started pre-op. They did bloodwork, chest x-rays, and we registered Caelyn. We left by 4:00, and headed to the Ronald McDonald House. It was such a nice place! They were so helpful, and we enjoyed having three meals a day, provided by wonderful volunteers. Saturday, we went to the mall to get Caelyn and special hearts build-a-bear. We named her 'Zipper'. ;) 

The next morning, at 4:00 am, we woke up and got ready for the long day ahead of us. We were at the hospital by 6:00, and Caelyn was taken back for surgery around 7:00. That was the hardest thing I have ever done, handing her over to that nurse. I broke down in tears. My family was very supportive, keeping my spirits up until she was out of surgery, at 12:36 pm. Dr. Mendeloff said her surgery went wonderfully! We briefly saw her sweet little face as they were wheeling her to the Congenital Heart Surgery Unit ICU.

Her recovery has gone very well so far, with no major setbacks. One of her chest tubes is draining a lot, so we may have to put another one in soon, but we will see. Darren has been so amazing, he is such a great daddy to our sweet baby girl.

Hopefully she continues down this path of recovery and we are home very soon. Thank you to everyone who has prayed for her, we very much appreciate every single prayer!