Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Tuesday, February 26, 2013

Day 26: Meet Kaitlyn and Klara Jane

Day 26 brings us the stories of Kaitlyn and Klara Jane...two beautiful little girls, born with broken hearts but unbreakable spirits!!!


Kaitlyn was born May 24th,2008 weighing 5lbs 5oz. She appeared to be a healthy baby, apart from a little jaundice that she developed due to her being 4 weeks premature. Doctors assured us that everything will be fine and that the jaundice will go away. Sure enough a couple weeks later, it did and we had our minds set on starting our life as a family. 

When Kaitlyn was 6 weeks old we had her go over to Grandma's house so me and her dad can have a night out by going to a dinner and a movie. After we returned about 10pm, she told us that Kaitlyn sounded a bit raspy in the chest and that she thinks that she might have a chest infection (his mom's a nurse). So we brought her to the ER immediately just in case, but wasn't too concerned since a cold is something that can be cured with antibiotics. Upon arriving, we noticed that Kaitlyn was starting to turn a little blue. They hooked her up to the O2 machine and her stats were in the high 80's. That set off alarms. At first they thought that she just had pneumonia so they admitted her to the PICU to start her on antibiotics and to give her oxygen. The next morning, the doctors were still a little concerned about the way she was breathing and her O2 since she was on oxygen. They ordered her a EKG and that's when our lives turned completely upside down and we knew at that time that no antibiotic was going to cure whatever she had. 

The pediatric cardiologist at the hospital sat us down and told us that our daughter was born with a severe heart defect called Double inlet left ventricle also known as Single ventricle and that she needed to be airlifted to Minneapolis, Minnesota to the University of Minnesota Fairview to undergo open heart surgery. I felt at that time that my heart got ripped out of my chest and my brain was going a million miles an hour of thinking what is going to happen to our little girl. I called my family and my best friend and they all met us at the hospital. I think I finally lost it when they had a Chaplin come in and say a prayer for our daughter. I think at that time, that's when reality started to hit that we might lose our baby. 

The hospitals airplane flew us to Minneapolis within a couple of hours. Everything was happening so quickly, but we knew that we needed to stay strong for Kaitlyn. We got in touch with the hospital's social worker and she set us up in a hotel room for a couple days until a room at the Ronald McDonald House was available. 

Three days after arriving in Minneapolis, I was holding Kaitlyn and all of a sudden she started having seizures. I put her back on her bed and they got a resident doctor who then contacted a neurologist. They ran some tests and confirmed that Kaitlyn suffered 3 massive strokes due to all of the blood going around her body and some of it traveled to her brain, caused embolisms, and they burst resulting in her having strokes. We were devastated at not knowing what the outcome of our baby was going to be. They delayed surgery for a couple more days to be sure that she was strong enough to go through it.

On July 23rd, 2008 and almost 2 months old, Kaitlyn underwent her first open heart surgery. It was the longest day in my life. While we were in the waiting room, the song from Alabama "Angels among us" came on the radio. I immediately got goosebumps. It was almost like it was a sign from God that angels were there looking over her. After 8 hours of surgery, Kaitlyn was done. We were told to go up to the PICU to wait for her arrival. We went up there, and about 45 minutes went by and I sensed that something was wrong. Soon after thinking that, I get a call to go back down to the waiting room because the nurse wanted to talk to us. I feared the worst. After getting down there, her primary nurse was almost in tears. She told us that when they went to move Kaitlyn from the table to the bed, her heart developed an air pocket and her heart stopped. Her surgeon pumped her heart with his two fingers for six minutes and brought her back. She was alive but just barely. 
We went back up to the PICU and when she arrived, I could barely recognize her because she was hooked up to so many machines, including ECMO, and she was so puffy that she looked like a year old baby instead of a 2 month old baby. She was so critical at that time that we weren't even aloud to talk to her nor touch her because stats would drop. I can't even tell you how badly I just wanted to scoop her up and make her feel better, but knowing that I couldn't, broke my heart.

The next 48 hours after Kaitlyn having surgery was the most critical. She about died twice after that and we were trying to prepare for the worse. All of a sudden, Kaitlyn started to get better. She got off the ECMO and then a couple weeks later she got off the ventilator. Things started to go in the right direction for once and before we didn't think we were ever going to go forward, nor did we think we were going to walk out of that hospital with our baby.

After 77 days in the hospital, Kaitlyn was discharged on September 26th, 2008. That was the best day of my life. 

Kaitlyn had her second open heart surgery June 26th, 2009 and she did great. We were in the hospital for a total of 10 days. We, along with doctors and nurses, was amazed that she did so great, despite the first time she was in the hospital. We got discharged the day before the 4th of July, and that next day we went down to the bridge in Minneapolis as a family and watched the fireworks. That was the best Independence Day of my life.

Today, Kaitlyn is 4 years old. She is in early childhood and next year she will be starting Kindergarten. She's growing up really fast and is staying as healthy as she can be. Since she did have the strokes when she was a infant, she did develop Cerebral Palsy and Epilepsy. She can't walk, talk, and she has some vision loss. Despite having all these setbacks, they do not slow her down. She is always happy and her laughter fills our house everyday. We couldn't be more proud of our heart princess/warrior. 


We discovered that Klara had a congenital heart defect at our 18 week ultrasound. During the scan of her heart it was very obvious that something wasn't right. Our doctor referred us to a pediatric cardiologist in Orlando. The following week we had our first ultrasound echocardiogram with the cardiologist; it was then that he confirmed Klara had Tetralogy of Fallot.
Tetralogy of Fallot has four characteristics. Ventricular septal defect (VSD) - There is a hole between the two bottom chambers (the ventricles) of the heart that eject blood to the body and lungs. Overriding aorta - The aorta, the large artery that takes blood to the body, is on top of both ventricles, instead of just the left ventricle as in a normal heart. Pulmonary stenosis - There is a narrowing of the pulmonary valve, the area below the valve, or the pulmonary arteries, which carry blood from the heart to the lungs. Hypertrophy - The right ventricle becomes thicker and more muscular than normal as a result of working harder to pump blood through the narrow pulmonary valve.
Her condition is on the more severe spectrum of this defect because in addition to the normal four characteristics, she had no pulmonary valve and her very small pulmonary arteries were not connected in the normal location of her heart; that is called pulmonary atresia without a pulmonary valve. As a result of no pulmonary valve and her pulmonary arteries not being attached, her body created multiple aorta pulmonary collateral arteries (MAPCAs); these collaterals created a pathway for her heart to pump blood to her lungs. Lastly, her VSD was extremely large.
Being that we knew Klara had a heart defect, we delivered her in a hospital on the other side of the state that was capable of handling a cardiac baby. On the day that we had her, there must have been twenty people in the surgical room. I had the surgical team that performed the cesarean and Klara had her own special cardiac team of specialist waiting for her. Immediately after she was born, her team did a quick assessment, allowed me to take a peek as they rolled her by in the isolate and then took her straight up to the Cardiovascular Intensive Care Unit (CVICU) where she would stay until discharged.
The CVICU team allowed Klara’s father to stay by her side the whole time. It wasn’t until early evening that I was allowed to go up to the CVICU to see my precious baby. I was not allowed to directly breastfeed because they had to measure everything that Klara took in so I had to use a breast pump all the time. As with almost all cardiac babies, it is recommended to give them a high calorie diet; therefore, I also had to add powder formula to my breast milk which is called fortifying. We were taught several ways to keep her awake during feeds; cardiac babies tend to tire out really quickly during feeds.
Though it was expected that she would need surgery immediately, she didn’t; Klara had great blood flow to her lungs thanks to her MAPCAs. However, Klara did have a battle with jaundice while she was in the hospital. She became really weak, refused to eat, and started dropping weight quickly. As a result, she had to be put under bilirubin lights, which is a phototherapy tool,  had to have a NG tube put in so that she could still get her nutrients. After a few bumpy days, Klara started doing well and we were allowed to take her home after two weeks.
Klara had to be closely monitored by her cardiologist and pediatrician once we were home. Feedings were such a battle because she would easily tire out and the high calorie diet would result in her throwing up her feeds. Regardless of the battles we faced with the feeds, she continued to gain weight enough and maintained decent oxygen stats to post pone her repair surgery until she was bigger.
 It wasn’t until she was 7 months old that she went in for her first open heart surgery. We took Klara back over to All Children’s Hospital for her first open heart surgery. We stayed the night before in the Ronald McDonald House. I remember we hardly slept that night. The awful thoughts of the worst kept flooding my mind. All I wanted to do was just hold her. I was so scared, yet anxious, about the surgery!
November 12, 2012: Surgery day! On the morning of her surgery calmness came over me. It was comforting that the hospital staff members were familiar faces that we had come to know on a first name basis from our visits from the last few months. We had asked for little contact with anyone on the morning of her surgery. Our pastor was there to lead us in prayer before she went back and our parents were with our older daughter in the surgical waiting area. The time had come for us to walk her to the surgical room door way. We tried to remain in positive spirits as much as we could up until this point. After handing her over and watching her be taken back to the surgical area, we lost it! My husband and I just held each other and cried.
Klara’s surgery was initially scheduled to last between 6-8 hours and consist of performing the following 1) Install the T-conduit in the location where the junction of her pulmonary arteries meet and enter into her heart. The T-conduit also contained a pulmonary valve. The T-conduit containing the valve is made here in the hospital by the surgeons. 2) Patch the Ventricular Septal Defect with a GOR-TEX (Teflon) material.
The actual surgery went a little different and much better than planned! The surgeons noticed that her pulmonary arteries from the left and right lung were indeed connected to a main pulmonary artery. The main pulmonary artery that is supposed to lead into the heart was just a few millimeters away. This meant that instead of installing the synthetic T-conduit, the surgeons were able to physically attach the artery to its appropriate position in the right ventricle of the heart. From drawings the surgeon showed us, it is under our impression that because of the way her arterial anatomy formed, there was some extra slack in her pulmonary artery for them to pull from.
The surgeons made a slice in the pulmonary artery and added a piece of monocusp to increase the diameter of the artery. Then the surgeons installed a pulmonary valve made from her pericardium, which is tough double layered membrane that covers the heart. The valve behaves like a one-way check valve in that it will only allow blood to flow in the direction of the lungs and not allow any blood back into the heart. This is different from the multiple flap-like valves we all have. The large hole in the ventricle septum was patched with GOR-TEX which also corrected the overriding aorta. There was a little bit shaved off the muscular wall of the right ventricular. Then her aortic valve was tightened up to the atrial septum so it would no longer be as large and not leak. The surgery was finalized by closing her up and wrapping her sternum with stainless steel wires.
Not including prep and post-surgery work, the surgery ended up taking 4 hours. We are very grateful that the bypass time was significantly reduced and that they ended up using her own tissue in instances they were originally going to use synthetic material.  Though the surgery was expected to be rather complex, it was truly by the precise planning of her surgeon and positively the blessing of our Lord that it was all completed in a matter of hours! We were always told that it could go either way once they actually see her heart and for Klara it went for the best!
When we first were able to see Klara she was already extubated but still rather out of it from her anesthesia. She had so many tubes coming out from all over but we were over joyed to see our little baby again! The first night of surgery was really rough because the pain medication that she was given was not working well and she actually was having an allergic reaction which was making her more irritated than anything. It took till the following afternoon to get all her pain medication worked out and Benadryl for her allergic reaction then she was resting peacefully. By the following day, day 2 of post operation, she was already starting to be her smiley self! It was amazing! The more they removed tubes and lines the more and more she started doing better. By that Friday, 4 days post-op, she was released from the hospital with flying colors!!
Again, Klara’s case was by far not the norm for many heart warriors. However, it just goes to show that every case is different. What we anticipated to be a complex lengthy risky surgery turned out to go smoother and more successful than we could have every imagined! Klara is now 10 ½ months old, almost walking, eating everything in sight, dancing machine, chunky monkey, flirty eyes, and bundle of joy!
She continues to be monitored by her cardiologist and pediatrician closely being that we’re just a few months post-op but they all couldn’t be happier with her progress. She still has 40% blockage in her pulmonary arteries and leakage in her VSD patch; however, we’re optimistic that her arteries will start growing in time and scar tissue will patch over the leak in her VSD. This won’t be her only open heart surgery; it’s unknown when or how many more open heart surgeries she will need but for today, we are enjoying every moment we have with her. We’ve seen so many fellow heart parents have to say goodbye to their warriors, so we take each and every day for the amazing blessing that it is!
This is the day which the Lord has made; Let us rejoice and be glad in it. ~Psalms 118:24

No comments:

Post a Comment