Khloe

On January 30, 2008 God blessed our family with the birth of our beautiful baby girl, Khloe’ Julia. On January 31, 2008, not even 24 hours after one of the most joyous times in our life we were blasted with the worst news of our life; Khloe’ has Tetralogy of Fallot as well as a disconnected Left Pulmonary Artery.
 
How could this be? She looks perfect, she is pink, she is crying, everything we expect of a newborn. The news came to us as we were getting ready to go home; thank God for the pediatrician on call for our regular pediatrician. He saved her life. Every OB appointment brought the same happy news, a beautiful heartbeat, good movement, good growth. The ultrasound at 28 weeks told us the news we had hoped for, it is a GIRL! What a wonderful addition to our family, two boys and now a princess. The ultrasound also brought good news, all systems functioning and everything looked great. The delivery was picture perfect, less than 7 hours, no real pain with contractions, epidural was wonderful, 3 pushes and our baby girl made her much anticipated debut into this world. My OB was amazed at how Khloe’ delivered. As she was crowning, she was moving her head from side to side, something my OB said she had never experienced before. Looking back I take it as Khloe’s way of telling us to move things along; she has a job to do in this life!
 
I remember feeling her body on mine for the first time. She was so amazing, so real. All the kicking, moving, and hiccups I had been feeling for those 9 months was now outside of me and real. This is a true sign of God’s grace and gift to us. Shortly after her birth, the nurse caring for her heard a murmur in her heartbeat. She assured us that this was common and that it was likely caused by a valve that would close off in about 24 to 48 hours. It is the valve that keeps blood out of the lungs while the baby is in utero. Once the baby is born the blood begins to flow through the pulmonary artery and that valve closes, getting rid of the murmur. OK, so everything is fine. Khloe’ was nice and pink, crying, doing everything they wanted her to do, except for the murmur. 
 
I remember so vividly putting her to my breast for the first time; I was so nervous because it had been so long since I breastfed, and I really, really wanted to be successful with Khloe’. I had only breastfed our twins for a month; it was so difficult with two. Khloe’ latched on and ate for the first time like an old pro. In fact, she really taught me what to do. It was a wonderful feeling. We had a good night; she ate and slept, ate and slept. The next morning we were packing our things to go home, waiting on my OB to discharge me and waiting for the pediatrician to check Khloe’ once more, and then we would be off to start our life at home with our newly expanded family. In the next few moments that morning, our lives would change forever with the news of Khloe’s congenital heart defect. The pediatrician came in to check Khloe’, and he spent a great deal of time just listening to her heart and not really saying a word or making any movements. I remember his words so vividly: “I don’t like the way it sounds, I am going to order the Echo.” Within literally a few minutes, the NICU came and got Khloe’ and that was the start of our journey. 
 
No, this can’t be happening, we were going home, everything is supposed to be fine I thought to myself, I literally cried out to my husband, “I can’t do this!!!” We stood in the hospital room in disbelief that any of this was happening, all I could do was cry, and pray. Within about an hour, the NICU nurse came in to tell us the news; Khloe’ has Tetralogy of Fallot, a congenital heart defect that causes 4 areas of the heart to form incorrectly. We didn’t know it at that specific time, but later learned that she also had a fifth defect in her heart where the left pulmonary artery was disconnected from the main pulmonary artery. Her aortic arch also arches to the opposite side, however later we learned this wasn’t causing any problems nor would it be repaired. The murmur we heard was literally keeping her alive because that valve had made sort of a “bypass” and was supplying the left pulmonary artery with blood so that is why she was pink and things seemed to be fine in the beginning. It was the shutting down of that valve, or PDA, that the pediatrician heard that concerned him. God bless him for saving Khloe’s life. If we had come home with her there would have been very serious, likely fatal, problems. 
 
The first thing that I thought was that she was going to die and that I must call my church to have her baptized. Thankfully we are blessed with a wonderful parish and wonderful priests. Father George was at the hospital within minutes. Khloe’ was baptized into our Catholic Faith on January 31, 2008, just one day old. Only my husband and I were present, aside from two beautiful nurses who prayed with us during the baptism. Father George also anointed her and prayed over her for a long time.  It was truly beautiful despite the situation. My dad arrived shortly after that, thank God because I think my husband needed help in holding me up. 
 
The NICU started her on a medicine called prostoglandin, which was keeping the PDA open, thus keeping the blood flowing to the Left pulmonary artery. The hospital called for Life Flight to take Khloe’ to Texas Children’s Hospital in Houston, but the weather was too bad so they took her by ambulance. The hospital quickly discharged me, and before we knew it we were following behind the Kangaroo Krew ambulance that held our precious baby inside. What a surreal moment that was. It was only an hour drive, but I felt it was a lifetime.   Once we arrived at Texas Children’s Hospital, they admitted Khloe’ to the NICU.  They hooked her up to every monitor available. As the day and evening progressed, we learned more and more about Khloe’s congenital heart defect. In fact, we have learned way more than we ever wanted to know about the heart in this life and the next. 
 
During her time in the NICU, Khloe’ was stable, requiring only an IV with the life saving medication and oxygen through nasal canula. Still, it was a frightening sight to see, our baby girl with all those wires, beeping and alarming all the while. We spent 13 days in the NICU while the entire cardiac team debated on which approach was best for Khloe’: a full repair via open heart surgery to correct the Tetralogy defects as well as reconnecting the pulmonary artery OR a shunt surgery (open heart) to correct the LPA now, followed by another open heart surgery in several months to correct the Tetralogy. Of course we were praying for only one surgery, but we wanted the best for Khloe’. It was decided that the full repair would be attempted since Khloe’s Tetralogy was rare (in a good way) in that there was not much scar tissue in the right ventricle of the heart (common in Tetralogy) that would require the heart muscle to be cut into in order to remove the scar tissue. So, having this special condition helped the surgeon decide that he could do the Tetralogy repairs while he reconnected the LPA to the main pulmonary artery. 
 
OK, so we are set. Surgery is Monday morning. One can never be prepared for this moment. I spent the entire night at her bedside, nursing her up until the last minute before she had to go NPO. The surgical and anesthetic team came to get her early in the morning. I remember walking with her to the elevator, up to the Cardiac floor, then departing from her in that grey hallway. I felt as though my heart and soul was being ripped out. It was the hardest moment to face. I am so thankful Ghaleb was there to hold me up, yet once again. 
 
Khloe’s surgery was 9 hours. We received updates every couple of hours, each one with good news, progressively getting us to the end around 5pm. The surgeon came out and briefed us on the surgery. He felt he made the best repairs he could for Khloe’ and was pleased. He did tell us the good tissue remaining of the LPA was very short, he had to use part of her pericardium to make the connection to the main pulmonary artery. He told us there was a chance that she could have some narrowing with the LPA that could require further surgery, but hopefully it could be done via catheter with a balloon or stint. The pulmonary valve would also become too leaky, possibly by adolescence requiring a surgery to replace the valve.
 
OK, so let us just see our baby girl. Another moment you can never prepare for. It was quite a terrifying sight. Khloe’ had wires, tubes, IV’s, you name it, coming out of her body. And her lips. Her beautiful, perfect lips. They were so swollen that I couldn’t recognize her. I remember thinking MY GOD, she will never nurse again. Once again Ghaleb had to hold me up. Each day (which ended up being only a miraculous 2 1⁄2 days) more and more tubes and wires were removed. Khloe’ progressed so well and so fast, we were out of the CVICU and into the step down room before we knew it. Once in the step-down room,  I was able to room in with Khloe’ full time. It was so wonderful to be able to be at her bedside all the time. Here we learned how to care for her IV, bathe her, basically do all care so that we would be prepared to go home.
 
We were home within a week. OK, so finally we are in the car, strapping Khloe’ into her car seat that we had so proudly loaded into our car some three weeks earlier expecting to come home in a day with our new baby, our new family. What a joy and a blessing. We love her as she is; perfect in every way. Her heart is different, not weak. In fact, her heart is strong, and will carry her through a lifetime of opportunities.
 
So we learned a few new things. Sometimes there are kinks in the road, some bigger and scarier than others. Sometimes life doesn’t go as we planned. Sometimes we feel helpless and totally out of control but deep down we know we never really have control in the first place. We learned that faith is a real word and that it can mean more to you in a crisis and bring new meaning to Life. Despite all the hard times, we made it.  Khloe’ made it. She is a fighter, she is strong. I think my entire pregnancy Khloe’ was kicking me so hard just to let me know she is a strong girl. Now I see it as her way of telling me that she would be OK. 
 
Today Khloe’ is 3 and 1⁄2 months old. We had our cardiologist follow up visit and she is doing well. We know that the possibility of heart surgery again to possibly widen the LPA as well as surgery in her adolescence years to replace the pulmonary valve are very real, still we pray for a miracle. We also pray that the medical technology will continue to progress and new and easier procedure will be perfected so that in the event she does need surgery it will be less invasive. We will live our life together to the fullest; living, laughing, loving all the while. God bless you on your journey, let God bring you through!

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.