The blog entry was written in October 2012 when Landrey was just a few weeks old.
I had waited for the sound.
“She’s not crying. She’s not crying,” I told Joshua. I knew what it meant. Every mother can’t breathe until they know their baby has taken their first.” I wouldn’t hear that cry for days.
The NICU team was lined up prepared for a baby with a cardiac defect. What they encountered was much more complicated that anyone predicted.
The months leading up to this moment were a guessing game from some of the most well-respected specialists you can find in one of the top medical centers in the country. Sonograms indicated a cystic hygroma around her neck diagnosed at 11 weeks. Echocardiograms indicated a severe congenital heart defect diagnosed at 18 weeks gestation. Some thought she could die in utero or die just after birth. Some believed it was just a cardiac issue and she could be healthy otherwise. Then preliminary genetic testing indicated perfect chromosomes. No one could have projected what would be next.
At 32 weeks, I was put on bedrest at a hospital in Dallas due to low amniotic fluid. I was living in a hospital two hours from Joshua who was in football season raising our 15-month-old daughter, Kourtney, alone. One morning I had to drop Kourtney unannounced at a daycare I knew nothing about and go to the hospital in a different state, never returning home until I was discharged a week later, then readmitted. A different coach’s wife would pick her up each night, sometimes some she didn’t know well. They would feed her and take her to Joshua after football practice. My family was seven hours away. We had just moved to a new city three months prior.
On Friday, September 7, 2012, they checked my amniotic fluid levels again and saw that they had dropped even further. They decided to go ahead and take Landrey. The day before the OBGYN warned us there was a good chance that this may happen. Joshua loaded up Kourtney in Oklahoma and took her to be with his aunt in Dallas and spent the night with me in the hospital to be in position. Landrey was born September 7, 2012 weighing 3 lbs. 14 oz. and was 16 3/4 inches long.
She was not breathing, so they had to use a manual ventilator. They whisked her away to the NICU. Just before taking her, they rolled her bed about three to four feet from the operating table where I was lying. They lifted her head up to show her to me and then took her away. I couldn't believe I didn't get to hold her. Little did I know, it would be nine more agonizing days until that moment came.
It took then about four to five hours to come give us an update on Landrey. We didn’t know why. It took them hours to get her airway stable with a ventilator and her IV lines into her bellybutton to be able to give her nutrients. The pediatric cardiologist came in and told us that her heart has a congenital heart defect called Tetralogy of Fallot, a four-part heart condition that usually requires surgeries every 2-3 years. But Landrey's wasn't typical...she might only need one surgery. She also said we needed Landrey’s PDA to close on its own. She expected that it would not or if it did maybe months away.
My heart sank. This sounded overwhelming. "My baby is in the highest level of critical care hooked to a ventilator?!! God, where are you in this? I've prayed in faith for her to be healed for months." He was there. I just couldn't see it yet.
My heart sank. this sounded overwhelming. "My baby is in the highest level of critical care hooked to a ventilator?!! God, where are you in this? I've prayed in faith for her to be healed for moths." He was there. I just couldn't see it yet. About 9 p.m. that night, I had enough strength to go to the NICU. Joshua rolled me as close as I could get to her isolette. I touched her foot for the first time....the tiniest little foot I have seen. She looked beautiful to me, an exact little Kourtney just less than half her size.
The day Landrey was born my older daughter became sicker than I’ve ever seen a child outside of a hospital. Joshua’s aunt had to keep her away from me at the hospital through the weekend. Then on Monday, it felt like everything fell apart. They released me from the hospital, but not with Landrey as she was still fighting for her life in the NICU. As Melissa, Kourtney and my mom went to go get the car out of the parking garage, I sat alone for transportation services to come wheel me out of the hospital. A man came in, finished loading some items, then looked around and said, "Wait, did they already take the baby down?" I broke down sobbing and couldn't stop. I wasn't getting to take my baby home. I hadn't even held her. He rolled me out and I cried all the way down.
“Mothers shouldn’t have to leave a hospital without their baby,” I cried to my mother. I knew in advance she most likely would be in the NICU, but something about driving away without her is not an emotion you can prepare yourself for.
We had planned to go to an apartment that a local ministry supports for patients in situations like ours but it didn't work out. We then started driving around Dallas trying to find a hotel. I called to see if I had any hotel points. I didn't have anywhere close to enough for a free room. I happen to mention to the lady why I needed a room. She was moved with compassion and gave us the remainder of the points for the free might. The next day, just four days after the c-section I began to have a minor complication. They caught it before it got serious. I walked probably 1-2 miles through the hospital going to see Landrey starting four days after the c-section. We went to go stay with our friends in Dallas. I was dealing with so much and in a lot of pain from getting so much exercise so quickly. My mom kept me accountable in my faith. She would not let me feel sorry for myself. She kept pushing me to keep standing on His Word of healing for Landrey and walk in joy. Happiness is a choice. Joy never comes from your circumstances.
On the third day of her life, the pediatric cardiologist told us her PDA had closed! This was a miracle, completely unexpected by the doctors!
On September 16. 2012, after 10 days, the morning finally came that I could hold Landrey. They had to wait until she was off the ventilator and only on a CPAP. They put her right on my chest, underneath my neck. I could feel her breathe and her heart beat steady. I can’t describe that feeling. I can close my eyes and still picture it, still feel her tiny precious body.
September 20, 2012, her lungs became strong enough to move from a CPAP to a nasal cannula. That provides oxygen but it's not pushed. She would be able to stay on a nasal cannula for a little while, then her lungs would fill with about 50% of fluid and she would have to go back to the CPAP. This cycle happened three times before they decided she was going into cardiac failure and needed to get into position for surgery.
The biggest news came one week later. Landrey's chromosome test came back negative for any abnormalities! My heart's cry for months was that she would be mentally healthy.
We ended up deciding that our older daughter and I do better when we see Joshua so instead of staying in Dallas, my mom, Kourtney and I moved back to our house in Oklahoma. For five weeks, I drove two hours one way to visit Landrey, then two hours back home to be able to tuck Kourtney in bed each night.
Our hearts are full of joy and gratitude for what the Lord has done. He has been so faithful. They are looking at doing her heart surgery when she is 4 months old. She needs to try to weigh 12 lbs. Today she weighs 5 lbs. She keeps making progress. She has such a sweet personality. She absolutely loves to cuddle and be swaddled. She recognizes my voice and when her Daddy holds her, her stats fall into line. :)
Join us in thanking God for the miracles He has already done and stand with us for continued healing for her heart, her lungs to continue to develop, that she can process her food properly and grow properly. He is our source and more than able! We believe!
"For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently." Romans 8:24-25.
After this post was written the following transpired: Landrey stayed from birth to six weeks old at one hospital in Dallas before being transported to a Children’s hospital. Their hope was to let her stay stable and gain weight before doing the surgery to repair Tetralogy of Fallot. Her lungs collapsed multiple times with a ventilator. She was going into cardiac distress. Her lungs kept filling with fluid. She had chronic lung disease and a life threatening cardiac condition. She had a massive hole in her heart and a narrowing of her pulmonary arteries going to her lungs, due to an overriding aorta. One side of her heart was enlarged. At that time, physicians told us she did not have a genetic issue and believed she could be intellectually on track. We would not learn of her other significant life-altering issues of severe epilepsy, immunodeficiency, or intellectually disability until years later. We thought that once her preemie lungs grew and they repaired her cardiac issues that the worst would be over and she could live a healthy normal life. We were completely blindsided by what would lie ahead.