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. :)

Growing too fast!

Bubble Princess!!!

Doing her morning tummy time.

My Princess is almost 4 months old!!! This getting older thing is saddening when it concerns your babies! Today she started swatting at her toys...I admit, a tear escaped my eye. She just looked like such a big girl grabbing her toy keys, not my little, helpless, needy baby!! We go to the pediatrician Thursday for her four month check up and shots. She takes shots like a little champ. I can't wait to see how much she weighs. My guess is 12 lbs, 10 oz. We will see if I'm right!

Caelyn has begun rolling from stomach to back, but only occasionally. She has done it maybe 10 times since about 8 weeks old. When doing tummy time, she lifts her chest and legs so high, it looks like she is balancing on her belly button! It's so cute.

She coos and talks and babbles all the time now. When I'm doing a little cleaning around the house, I usually put her in her swing or lay her on a blanket on the living room floor. I will hear her from the kitchen or bathroom just babbling away at that silly ol ceiling fan or the shadows on the wall. She loves it when we talk back to her. She smiles so much now. Today we were at Baby's R Us, and I was pushing her in her stroller, she was sitting in her car seat facing me. I happened to look down at her and she had the biggest, slobbery, bubbly grin on her face. I wasn't even smiling, talking, or looking at her, and she was smiling at me. It melts my heart.

We finally scheduled her heart surgery: July 26. The day cannot come fast enough. I just want my baby's heart healthy and perfect, and not have to worry about her oxygen levels anymore. That is constantly nagging me in the back of my mind, and sometimes I notice how blue her lips/feet/hands are. I borrowed a stethascope from my mom yesterday (she is an LPN) so I can listen to Caelyn's heart anytime I want. Her heart sounds like "woosh-woosh...woosh-woosh" instead of "thump-thump...thump-thump" like a healthy, normal heart.

We are going to go hang out with a friend at the pool this week. Caelyn has never been swimming. She loves bathtime, so hopefully she will love the pool. Her bathing suit is huge on her, but she still looks cute. I havent had any luck finding any bathing suits in size 0-3 months! So I bought a 3-6 month size, and it's a little big.

My sweet baby is growing up too fast. Soon she will be crawling and talking! I love her so much!

Busy Week!

This past week was very busy for little Caelyn!

On Monday, she had her 3 month check-up. She was 11 pounds 7 oz and 23 inches long. We had bloodwork done Tuesday and Wednesday to rule out Digeorge Syndrome, those test results came back normal!

Caelyn stayed Wednesday night with my friend Hannah (first night away from my baby girl! I was worried the entire night) so Darren and I could celebrate our 4 year anniversary. We stayed at Diamond Jacks casino, and ate at Wine Country. It was a great anniversary.


We drove to Dallas Friday for her cardiology appointment. We did an EKG, which looked good, and her O2 levels were at 94%!! Yayy!! We didnt do an echocardiogram this visit, but we will next visit (June 20) to look at her coronary arteries to see if she will need a catheter put in before her surgery. Her cardiologist, Dr. Kao, said the bloodwork that was done the previous days dont necissarily rule out Digeorge Syndrome, so we are going to do another blood panel called FISH. It's specifically for Digeorge Syndrome. We scheduled her open heart surgery for July 7, give or take a few days depending on Darren's work schedule.


Saturday morning was the blood drive I sponsored in Caelyn's honor! It was great. About 37 units of blood were donated, and a few people donated platelets/red blood cells. It was a chilly day (hard to imagine a chilly day in Louisiana!) and very windy, but around 2 it finally warmed up.

Hopefully this week is a little more quiet! I'm sure Caelyn is pooped from her busy week.

Caelyn was 13 weeks old on Friday. She is eating like a little piggie, about 5 oz every 3-4 hours. The last two nights, we fed her around 7 pm, put her to bed about 8:30, and she slept until 7 am Saturday night and 6:30 am last night!! She is such a great sleeper. She is smiling and giggling so much lately, but is pretty clingy. She doesnt like being laid in her swing or sitting in her Bumbo. She wants to be held all the time. So it's pretty hard to get anything done around the house! Oh well! ;)
I love my little princess so much!

Happy Mama's Day! :)

Mommy and Caelyn - 1st Mothers Day 2011



Today was my very first Mother's Day.


My husband went to work yesterday at 2 pm and was on the job all night/morning...so I didnt get breakfast in bed or to sleep in, but that's ok. :)


I got to spend the morning with my gorgeous girl. We snuggled in the recliner. Darren got home around 1:00, he walked in the door with flowers, a card from him and one from Caelyn, and my favorite chocolates: Dove dark chocolate, my weakness. He was so tired from working all night, and hadn't slept in over 36 hours, but he wanted to take me out to eat. So we went to Carraba's, and Caelyn decided she wanted the day to be about her. ;) As soon as we paid and left, she turned into the happiest, smiliest baby ever. I love her smiles. She is so cute.


We shopped a little bit and I got some new sunglasses, then we went to my mom's and I gave her my gift and we sat and talked for a little. Then Caelyn decided she was hungry. So we came home. It wasn't how I imagined/dreamed my first Mother's Day would be like, but all that matters is that I'm a Mama and got to spend the day with my little love. I dont take one second for granted with her, I read about babies being lost everyday, and it makes me realize how lucky I am to have her in my arms.


Happy Mother's Day to ALL Mamas...whether you are holding your babies in your arms or in your hearts, you deserve to be treated like a Princess.

Hello! :)

I've decided to start blogging, mainly about my precious baby girl, Caelyn. I'm new at this, and I havent written much since high school, so bare with me. This is my pregnancy/birth story.


I got pregnant in May of 2010, it was kind of a surprise, as we had been "not preventing" for about 9 months and nothing was happening. Needless to say, I was ecstatic. I had a textbook pregnancy, was very lucky I had a little bit of nausea, and was a little tired, but that's it. I felt great. I loved being pregnant. At 20 weeks, we found out we were expecting a girl. My husband, Darren, was a little disappointed, but soon got over that and became as excited as me. We immediately starting buying clothes and decorating her nursery.


At my 30 week growth ultrasound, the tech took a few pictures of Caelyn's face in 3D for us, confirmed she was still a girl, and then checked out her size and organs. We kept a casual conversation going, then the tech got quiet. She spent about 15 minutes just looking at Caelyn's heart. She didnt really say much, but Darren and I kept talking about Caelyn's little chubby cheeks.


After the ultrasound, I went in to the exam room to see the doctor. He walked in and didn't look as happy as he usually did. That's when he said "We found a hole in your baby's heart."


I broke down. I had no idea that holes in the heart are common, but in my pregnant, emotional state, I couldnt help it. He kept telling me it's very common, and it will probably close up before she is born and not to worry, but he wanted to send me to a MFM specialist just to double check. The next week, we went to Dr. Jones. They did an in-depth ultrasound of her heart, and that's when he told us he thinks Caelyn has a heart defect called tetralogy of Fallot. He went over the anatomy in his doctor lingo, but we didnt hear a word except for "survivability". Darren and I both held back tears. He wanted us to go to Dallas (3 hours away) to a pediatric cardiologist, Dr. Kao.


So, the next week, we headed to Medical City Dallas Hospital. Dr. Kao confirmed the diagnoses of tetralogy of Fallot (TOF), and explained everything clearly to us. She told us Caelyn had a mild case, and would probably wait 4-6 months for surgery. At this point, I was about 34 weeks pregnant. Dr. Kao wanted us to deliver at Medical City at 38-39 weeks. We toured the maternity ward and the NICU, made an appointment for 38 weeks 6 days to come and check for dilation.


On February 10, we packed our hospital bags and headed to Dallas. I was already 3 cm dilated, so they scheduled induction for the next day. We were a bundle of nerves, but excited to meet our baby girl.


The next morning, I was induced at around 8:30 am. I labored for 5 hours, then asked for my epidural. Everything had been progressing great up until this point. After my epidural, things slowed down, I even started closing up a bit. They told me Caelyn was "sunny side up" and wasnt coming down, and then she went into distress. Dr. Rogers (delivering OB) told me the best thing would be to do a ceserean section. I was devastated. I cried being wheeled into the OR. I was so scared.

I sucked it up, and was just thankful that my baby girl was going to be here soon. Darren came in and took pictures of her coming out, and I heard the sweetest sound in the world, her cry. They cleaned her up, let me kiss her, and took her to the Neonatal Intensive Care Unit. I wouldnt see her again until the next day.

The rest of the day was horrible. I had convulsions for about 6 hours due to my hormones and the anesthesia. That night, every 3 hours, I would wake up and pump and Darren would go down to the NICU to deliver the milk, and he got to feed her and change her diaper. He took pictures to show me. I didnt feel much pain until the next morning when they told me I had to get up and walk to the bathroom. I had to do this before I could go see my baby. That was my motivation. It was the worst pain I have ever felt. But I did it. That was at about 6 am. I then had to wait for the anesthesiologist to come take my epidural out. She didnt come until noon. After that, Darren wheeled me down to the NICU in a wheelchair, since it still hurt so bad to walk. I finally got to hold my daughter! It was amazing. She was perfect. The NICU doctor said she was doing amazing. Caelyn was having some feeding problems, she kept aspirating the milk, so they put in a feeding tube down her nose until a therapist could come see her. They never found out why she was doing this, so we have to put a thickener in her milk so she doesnt choke. Caelyn spent 5 days in the NICU and then got to come home. I was released the day before she was, and we got to spend the night in the NICU family room with Caelyn.
February 16, we got to take her home. The next few days were a blur, but Caelyn is such a good baby. She rarely cries, and her heart is doing great. She goes to Dallas to see Dr. Kao once a month, and next visit we are going to schedule her surgery. I'm so ready to get past all of this and move on to live a normal life! I hate worrying about Caelyn, worrying if she will stop breathing, and worrying when she screams she turns blue.
I wouldnt trade any of this for the world, Caelyn is completely worth it.