Today marks TWO years since Aliza’s OPEN HEART SURGERY!! WooHoo! I cannot believe it! Two years has flown right by! My husband and I promised that we would always celebrate this day honoring our daughter’s strength, surviving OPEN HEART surgery! She is one kick ass warrior and as hard as this day was 2 years go, we are here today to celebrate our daughter’s second chance at life!
When I was 20 weeks pregnant, we found out our daughter had a heart defect called Tetralogy of Fallot. We also found out her heart defect would require open-heart surgery. I was completely devastated and cried for an entire day straight. The rest of my pregnancy required me to see a perinatologist twice a week, a fetal cardiologist once a week and my OBGYN. That means I saw a doctor 60+ times before giving birth! WHEW! It was a lot, but we had to make sure she was growing properly and not under any stress. We were referred to a world-renowned cardiac surgeon when I was 25 weeks pregnant. DR. BURKE! NO, not Dr. Burke from Grey’s Anatomy 😉 Anyways, we scheduled an appointment to meet him and tour the hospital. It was terrifying but we were very impressed with Dr. Burke’s confidence to perform her surgery. He made us feel extremely comfortable and we felt semi-prepared for what was to come!
My OB allowed me to try and have a natural birth, but after 12 hours of intensive labor, Aliza was distressed and needed to get out! A C-section was performed and practically everyone in the hospital awaited her arrival. I saw her for what felt like a second before she was rushed to the NICU. She needed to be monitored from the moment she arrived. It was a long week and I was discharged home without Aliza. Leaving the hospital without my baby sucked! She spent 7 days in the NICU before she could come home with us.
This was the FIRST picture I took of Aliza when I forced the nurses to wheel me into the NICU after my C-SECTION. It was 3 AM by the time I saw her and I was completely out of it, so I was so glad I snapped this picture!
A day after coming home she was at her first cardiologist appointment. She was there every two weeks up until her surgery! These were not easy appointments. She would start with an EKG which required her to stay still and than a one hour echocardiogram exam which also required her to stay still. Her cardiologist would say “ Her heart condition is very severe but she can live with it a little longer.” I always left there so confused! Like how reassuring?! She wanted Aliza to be as big as possible for the surgery. She thought Aliza was going to make it to 9 or 10 months but her little heart did not make it that long.
The doctors would always remind us not to let Aliza cry. Yup! How can you not let a BABY cry! I went to visit a friend who just had her baby and on my way home is when it happened. Aliza started to cry… I was alone and stuck in 5PM traffic! JUST MY LUCK! I started to sing to her to try and calm her down but her crying only got worse. I started to get frantic trying to cut through lanes to get to a safe place to stop. It had maybe been one minute at this point, but it felt like forever. As I turned into the plaza her loud cry came to a sudden stop. It was the worst silence I ever experienced. I jumped out of my car and flew into the back seat where I found her grey, unresponsive and head slumped downward. I panicked and pulled her out of her car seat. As I pulled her out she regained her consciousness and looked perfectly fine. I knew this was not normal and thankfully I was close to my house. I picked up my husband and we flew to the hospital! They confirmed she had a TET spell and her heart had stopped for 10-15 seconds. They kept us overnight for observation and the following night they transferred us to Nicklaus Children’s Hospital where they performed her procedure.
What Is Tetralogy of Fallot?
Tetralogy of Fallot, in plain English is a heart defect that affects four parts of the heart. TOF is pretty rare only occurring in 5 out of 10,000 births. TOF has no known cause and occurs during the heart’s development. To put things into perspective Aliza was only the 200th case of TOF at Nickalous Children’s Hospital….YEA!
- A VSD (Ventriuclar Septal Defect)
- A hole in the septum. The tip of Dr. Burke’s pinky finger was the size of the hole in Aliza’s heart.
- Pulmonary Stenosis- narrowing of the pulmonary artery
- (90% of Aliza’s artery was blocked)
- Right Ventricular Hypertrophy
- The severe narrowing of this ventricle wall is what caused Aliza’s TET spell
- Overriding Aorta
- The hole in Aliza’s heart forced her aorta to enter the wrong chamber.
On the morning of her surgery we were terrified. Our whole family was there bright and early. Aliza was excited to see everyone and had no idea what was going on. All she felt was love, peace and happiness! Our pastor came to pray with us and before we knew it I was placing my baby girl into the doctors hands. I smiled for one last picture, turned around and fell into my husbands arms. All the tears I had been holding in came pouring out. We were guided into the waiting room and patiently waited for updates.
The first update was rough. It took them an hour to put in a central line. They attempted her hands, both sides of her neck and left groin before successfully placing it in her right groin. Although she did not feel it, it was hard to see those bruises after the fact. The nurse updated us with good news, every hour for four hours. Aliza was doing GREAT! Dr. Burke came out to talk to us when he was finished. He told us how great she did and how perfect the repair was. He was able to repair each section of her heart and the best news was that he was able to use her own tissue to close her hole and repair her artery! He explained that using her own tissue was what he wanted because her own tissue would grow with her and would not require another open heart surgery in the future! TOF babies could have multiple open heart surgeries throughout life, so this was excellent news for us. AMEN, ALL GLORY GOES TO GOD! I snapped a quick picture as she passed by on her way to the CICU.
CICU-Cardiac Intensive Care Unit
It took 45 minutes to set her up before we could see her. She was connected to 9 machines that filled her with all different types of medications. The first day was the worst. It was traumatizing to see her in this condition. Her chest tubes were the worst part. The tubes were connected to a bucket at the end of the bed and the nurse had to pull on the tubes and drain all the excess blood. I will never forget the little moan she was making. I could feel her pain, I wanted to switch places with her so bad. I remember having to sit down because I almost passed out watching them pull all of the blood from her tiny body. There was not much we could do but sit there and look at her. We were scared to even touch her because she looked so fragile.
The second day was the same. She was still sedated in order to remove her chest tubes. She was swollen and still made a painful moan. I just remember reading to her. I did not know what else to do. I just wanted her to be back to normal! Awake, alert and back to the happy baby she was.
By the third day she was waking up but had difficulty eating. She would not take a bottle of pumped milk so very carefully I breastfed my baby! I remember crying. My baby needed me, I was her food source. She was now eating and making some progress. She was able to be sat up a little bit, but not for long. Brushing her hair and feeding her was as much as I could do to let her know I was there.
By the fourth day, her swelling decreased and her bandages were removed. This was hard to watch because it was the first time we saw her incisions. It did not look pretty but it was another step accomplished towards going home. Removing the tape was hard. We tried to distract her but she was pretty much getting a bandage ripped off her whole abdomen. I watched the nurse put steri strips over all her incisions. Aliza was a rock star during the whole process.
Aliza was doing so good!! Everyday they removed machines she no longer needed. On day 5 they removed the last machine. The central line that was stitched into her groin was removed and most of the wires connected to her were gone! That night she was moved out of the CICU and returned to a regular room! My husband and I stayed at the Ronald Mc Donald apartments connected to the hospital but moved back with her when she was moved.
Aliza was back in my arms! I was able to pick up my baby again!! Try not holding your 5 month old baby for a week! We spent a day in our regular room and finalized all discharge papers! We were finally going HOME!!
On the seventh day we were on our way home!! I could not believe it was all over. The surgery that our family anticipated for the last year was OVER! The happiness I felt was out of this world. My daughter was given a second chance. I do not have the means to THANK Dr. Burke the way I want! I can only pray that the lord blesses his life with GREAT abundance! God used his hands to perform a miracle on my daughter.
In honor of Aliza’s 2 Year Heartiversary, I made a piece of canvas art to hang in her room! These are the colors of the CHD ribbon! It was not a toddler friendly craft but she did enjoy watching me make it!
- Canvas (Any size you want, I used 10×10)
- Premium oil based paint pens (Black and Gold)- Amazing to have all colors, they write on everything and dry quickly!
- Construction paper
- Hot glue gun
I started with a blank canvas and marked my measurements on each side. Each white stripe is an inch and the black stripes are 2 inches. I used a ruler for straight edges and colored in my stripes with the black oil based pen. I let it dry for an hour just to be safe. I used one piece of construction paper and cut out a heart to the size I wanted. I glued the paper heart to the canvas first and then started gluing the buttons. I layered the buttons to fill the holes. I burned myself like 100 times but it was worth it, so just be careful y’all ! Write whatever you want at the bottom and well ah! 5 hours later you have a beautiful piece of art. JK it does not take 5 hours! Have fun with it!
WHAT HAPPENED TO COTA MOM?
Oh! While I created this beautiful piece of art, Aliza was working on a fine motor activity. I took a recycled snack box and wrapped it up with some wrapping paper. You do not have to wrap it, I just like to be extra. If you wrap the box, leave the side that opens, open. Cut a slit in the top. This was Aliza first time, so I made the hole a little bigger, but I will make it smaller next time to make it more challenging.
Fine Motor Activity
Put some buttons on the side of the box. Have your toddler pick up the buttons and insert them in the hole! This activity increases your toddles fine motor coordination as well as working on hand eye coordination. AWESOME!
Try to encourage them to use their thumb and index finger. If they are having trouble using these two fingers, have them hold a button in the palm their hand with their three other fingers. This will help them isolate those two fingers to maintain pincer grasp! Do not forget to use both hands. Once they have finished using their dominate hand, switch the buttons to the other side of the box!
This activity only requires a box and buttons. If you do not have buttons use beads, dry beans, coins or anything small! Get creative! Aliza thought this was the coolest thing ever. She was so proud of herself every time she dropped a button inside. Make sure to keep a close eye on your toddler, they may try to slip these objects in their mouth! They are FAST!
Did you know that CHD is the most common birth defect in babies affecting 40,000 births per year! Nearly 1 in 100 babies are born with a heart defect. Aliza is just one of those babies! Did you know, that CHD is the #1 cause of death from a birth defect. There are 35+ CHD’s! CHD is not always found during pregnancy or even birth, some are not found until childhood, adolescence, adulthood or death when it is too late! I was fortunate to have a very anal doctor for my first pregnancy. He considered me high risk based off the fact that I was adopted and had no background history and he made sure to schedule an echo exam when I was 20 weeks pregnant. My ultrasound tech noticed something was not right and sent us to the fetal cardiologist. I thank God for all the circumstances, because we could have left the hospital with Aliza without proper care. We were blessed, but unfortunately this is not the case for others. We need to bring awareness to this topic. Echo exams during pregnancy should be required! If this is so common, why are we not on top of it!? God blessed Aliza with a beautiful testimony to be shared, to help others going through similar situations. CHD is never cured! Aliza’s heart is repaired thank God, but she will have to be monitored for the rest of her life. Some babies will need multiple surgeries or even need a transplant. CHD is a monster!
You Guys! If you LOVE Aliza and are touched by her story help me bring some awareness to CHD WARRIORS. I came across these awesome decals and thought this could be the perfect start! CLICK HERE to get yours in honor of Aliza and all of God’s CHD Warriors! When you get your decal take a picture and tag @cota_mom.
If you got to this point, THANK YOU for reading my story. Today I will hang the canvas on my daughters wall and HUG her TIGHT. She is BEYOND AMAZING and I thank God for her life every single day. She is the true definition of Strength.
*This post contains affiliate links, which means I receive a small commission, at no extra cost to you, if you make a purchase using this link.