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!  

It's Finally July...

These pictures show some of the adventures we had in June.

Caelyn at the park swinging for the first time!

Caelyn and her friend, Jade, before going swimming.

Cute little bumbums!

Caelyn relaxing in her bouncer. She cant reach the floor yet. :)

Daddy holding Caelyn at her first time at the movies, we saw Cars 2 with her cousin, Torin. She watched the first 15 minutes, then fell asleep. :)

It is now July...the month of the dreaded surgery. I know Caelyn isnt thinking about it! Haha...but it's all I think about. I'm wishing time would slow down, but I'm also anxious to get it over with. I know she will be fine, but I dont want to see her in pain.

At the immunologist two days ago, Caelyn weighed 13 lbs and 8 oz and was 24 inches long. She is getting so chunky!! :) Dr. Bahna, the immunologist, thinks Caelyn probably has a mild case of Digeorge Syndrome. So he drew more blood and those results will be back in a few weeks. We need to know before her surgery so we can take extra precautions in the type of blood she gets and in her recovery. Digeorge Syndrome reduces the effectiveness of the immune system, so these babies can get sick easier than a normal baby.

She keeps getting abcesses after her shots. She has one on both thighs. The one on the left thigh is from her two month vaccines, and the one on her right thigh is from her four month vaccines. They have both been drained, and we are trying to figure out why she is getting these. Some test results will be in on Monday, so hopefully we can figure this out. She is on a stronger antibiotic this time around, so hopefully they will be all healed up before her surgery.

She is now rolling from her tummy to back all the time. She hasn't quite mastered back to tummy, but she tries. She turns her head really far to one side and arches her back trying to roll. It's so cute. :) She says "Ma ma ma ma" all the time. I chose to believe she is calling for me. ;) Haha. She stopped sleeping through the night the day she turned 4 months old. At first, she was waking up 4-5 times a night, and now it's only once or twice. Hopefully she startes sleeping through the night again soon. Her feeding is sparatic, but she still eats every 4 hours. Some feedings she will eat 6 ounches, and some she will only eat 2 or 3 ounces. It worries me, because she only gets about 20 ounces a day, but she is gaining weight very well, so I try not to dwell on it.

We have been hanging out with friends a lot lately since Darren has been working so much. Ashley has three crazy, beautiful kids. Natalie is 4, Aleks is 3 and my little snuggle buddy, and Andrejas is 19 months. Caelyn loves to watch them run around. Kelli has beautiful little Jade, who is only 7 days older than Caelyn. Jade was born about 6 weeks premature, so she is a tiny little thing. They love doing tummy time, swimming, napping, and babbling with each other. It's nice to hang out with friends who have kids.

In about a week, Caelyn and I are making a road trip down to Baton Rouge to visit some family I havent seen in over 11 years! Darren will be doing his yearly National Guard training, so I wanted to go see them. My cousin, Nikki, has a 6 month old son, Lee-Joseph, who I cant wait to meet! Him and Caelyn are going to have so much fun together.

I cant wait to see what the next few weeks holds in store for my beautiful baby girl!

Four months!

Today my little love is 17 weeks old, and tomorrow she will officially be 4 months. Her four month stats:
Weight: 12 lbs. 12 oz.

Height: 23 3/4 inches

She is such a little chunk-chunk! But I love it! Her rolls are irresistable.

This is a picture of her first time in the pool! She fell asleep in her floatie. She looked so chunky in that thing. :)