Harper is doing really well. I have posted some before and after pics along with this post to show you how different this little baby girl is now that her heart has been healed. You can click on the link "ASD Video Information" to watch a quick clip telling a little about H's condition.
Baby H was born with both Atrial Septal Defect (ASD) and Ventricular Septal Defact (VSD). These are heart defects and were diagnosed before leaving the hospital after she was born. H's cardiologist advised us and our family members not to look her defect up online as she may very well grow out of it within about 3 weeks time. Well, that wasn't the case. It was a struggle for H to simply eat. Because of her defects, improper blood flow to her heart was causing her to pant and sweat during each feeding. Nursing was actually going well considering she had latched well in the hospital before leaving to go home, then was forced to drink formula from a bottle when I was in the ICU, then latched back to nurse once I returned home and was off of the antibiotics and other medicine that caused nursing to be unsafe. However, she was only able to drink .5 oz. at a time due to her heart defects making her so tired. It was like running a marathon, untrained, just in order to nurse! Obviously, at her pediatric appointments, we were told that she was not gaining weight appropriately. After many pediatric and cardiology appointments, and a huge struggle of having to supplement with formula, we (Dr.'s, KJ and I) realized she would need open heart surgery...
The next morning, we finished packing up, got into the car, and left for UCLA. We had NO clue what lay ahead!
I sat in the back with H. She did so well and slept the majority of the ride to UCLA. Once we arrived, we waited in the emergency room to be admitted. H got called back, weighed, measured, fed, seen by several doctors, and put into a room until a bed opened up for her upstairs. We were immediately impressed with all of the doctors and nurses! We were treated with kindness and sensitivity and were always kept informed. We only waited a few hours in the emergency room (we were warned it could be overnight or several overnights in the ER before a bed would open up) before we were taken up to her room on the pediatric oncology wing. The pediatric cardiology wing was full.
Once H was all settled in her room, KJ and I took turns staying with her and getting settled in our own accommodations; as well as eating, resting, and attending Dr.'s rounds so we could hear what the next phase of treatment was going to be for our little girl. She had several x-rays, EKGs, ECHOs, and was weighed daily for the next couple of days until it was finally decided that she needed a feeding tube to assist in her in gaining weight in order to prepare for open heart surgery. At this point, when the surgeon finally came to us and told us that open heart surgery was the definite plan for H, we were actually relieved. After 7, long weeks of watching her struggle to eat, and never gaining weight, we were desperate for something, even if it meant open heart surgery, to help our precious baby. We completely trusted the surgeons and doctors, but most importantly we knew God had H exactly where he knew she would always end up, and we were ready for our baby to get the help she needed to survive!
Surgery day: I can remember EVERY SINGLE MOMENT... KJ and I both stayed the night with H the night before her surgery. KJ was up until 2am with H and the nurses, trying to get her to eat for the last few times before having to fast for the surgery. I was trying to get some rest but kept waking up throughout the night and checking on them. God definitely blessed my sleep as I was able to get the best night's rest I had gotten since she was born, even when waking up a few times to check on H. (Most people may have gotten their worst night's sleep in this same situation).
A couple family members came before the sun was up to kiss our baby before she was taken to the pre-operating area. As family members were chauffeured to the pre-op waiting room, KJ and I went with H to a little room where they took her vitals, hooked her up to some machines, and we tried to pacify her hunger with a paci... she actually did really well. After what seemed like forever and a million doctors, nurses, and anesthesiologists later, H was taken away from us down a long hallway. We headed upstairs to meet the rest of our family to wait until her surgery was finished.
We were told that H's surgery would last a total of about two hours, and that her nurse would call us in the waiting room and inform us of when the Dr. had made the first incision. Two hours later, we got the first call saying the incision had been made.... this was the longest two hours of my life. The nurse explained to me that they had trouble getting IVs into our little tiny baby girl's body. It had taken them the entire two hours just to get her prepared for her surgery. After I hung up the phone, I broke down in hysterics, in front of everyone, in the waiting room. I don't know why this moment was so monumental to me emotionally, but maybe it made everything very, very real to me. Maybe I had been holding my breathe for 7, long weeks, and I needed to exhale all of the emotion I had yet to express. Whatever it was, I still never lost faith that God would see her through her surgery. He would assist the surgeons and doctors, and be right by my baby girl's side the whole time.
It was only 30 minutes later that H's surgeon came up to speak with us to tell us the two holes in her heart had been patched and the surgery was successful. We waited a while longer to see our baby girl. When we were finally able to see her, nothing would prepare KJ and I for what we saw...
It was like a scene from your worst nightmare. Your tiny 6 pound infant's life being sustained by machines that were so big and loud, with so many wires and tubes, we could hardly even find her amongst it all. Her tiny chest with the long, closed up incision and a chest tube coming our her stomach, an intubation tube in her mouth that kept her breathing, IVs everywhere, and monitors that told us every little detail about how her major organs were functioning. At the sight, I stopped breathing, my legs turned to jello, my head grew dizzy, my heart was broken for the millionth time throughout this process, and I barely made it to a chair beside her bed. I thought I was going to pass out, luckily, I didn't. However, my heart and emotions were numb. I didn't know what to say, how to act, what to do. I just listened. Listened to the noises and watched her little body, praying God was comforting her in this painful situation. (KJ mentioned later that when he saw her he wanted to rip out all of the tubes and run away with her, to save her from her pain. From what we have heard, the hardest part about being a parent is doing what is truly best for them. We learned this early, as it was obviously best for KJ to leave her right where she was at where she could be cared for appropriately by doctors and nurses).
After the shock of the situation wore off a little, KJ began to ask the nurse several questions about what we could expect for the next few days. We were constantly kept informed and, again, we took turns staying wither her overnight. Slowly but surely, the different tubes, and wires were taken off of her. Day by day, Harper was growing stronger. We got to take our little blessing home from the hospital, again, about a week after surgery.
Today, she is a very strong, healthy baby girl. And we are the most blessed parents to have her with us! We thank God for our baby girl's life!
Just this past Sunday Pastor Roger did a sermon that really solidified what KJ and I had put our faith in all along. He talked about how suffering and difficulties are a natural part of life. These trials are what make us dependent on Christ because our sufferings are God's way of giving us the opportunity to trust in, and depend on Him, instead of ourselves to get through. Many of us just decide to be angry and question what we ever did to deserve something so horrible in our lives, and push God away. However, God never promised to exempt us from sufferings and difficulties because we became Christians. Showing faith and strength in God through trials can be a ministry to others. Maybe Harper's story has touched one person in a way that will be unforgettable. Maybe her strength has given someone else strength. Hopefully her story will be a true testament of God's love.
Before Surgery:
After surgery:
