Those of you that know me know that I am a planner. I plan everything, but sometimes God throws us a curveball and our plans absolutely don’t go according to how you would like for them to go. When a plan gets thrown off, we become fearful, angry, or even sad. When I got pregnant with our second daughter I had a plan. The plan was simple. It wasn’t anything extravagant, but it was a plan none the less. My plan was to have her at Ennis Regional Medical Center, everything would go smoothly, and we would get to bring her home to her sister two days later (I say two days because I already knew she would have to be a C-section due to the fact that Reagan was a C-section). My plan did not happen.
I found out I was pregnant in March of 2015. My pregnancy started out great. I had a little nausea but never threw up. I kept my weight gain in the range it was supposed to be, and I exercised to stay healthy. We had a trip planned for July of 2015 to Disney World (Those of you who know me also know that I am a Mickey Mouse fanatic. I mean like I could live at Disney World and my life would be complete). Two weeks before we were supposed to leave to go on our trip, I had a normal check up with my doctor. As she was listening to Sadie’s heart rate with her little handheld thingy (yes that is a technical medical term) we both noticed that her heart beat sounded really funny. It wasn’t the normal thumping that you hear. I watched the doctor’s face to see if I was just hearing things or if it was abnormal. She told me that she thought Sadie had a heart arrhythmia and that we needed to go see a specialist to get her looked at. Before I had left the doctor’s office they already had me an appointment for the following week to see the maternal fetal medicine specialist. Everything happened so fast that I didn’t quite have time to process it. One moment your baby is fine and healthy and the next you are being told to see a specialist because her heart isn’t normal. I got into the car and started driving to Corsicana (which was about 30 minutes away) to meet Drew for lunch. I called him and told him what the doctor said. Of course he was scared but trying to be positive. I called my mom because well let’s just face it, even though I’m 23 I still want my mom when I am scared. She told me she was going to meet me in town for lunch with Drew because she needed to see me. As soon as I hung up the phone with her I cried. I cried for a good 10 minutes because I was fearful, angry, and sad. My plan was not going according to how it was supposed to go. In my fear I cried out to God. I asked him to place His comforting arms around my family and myself and for us to not worry about this issue but to hand it over to Him. Now, this was a big deal for me because not only am I a planner, but I am a worrier as well. I mean I worry about the smallest thing to the point that my husband gets annoyed with me. I worry about things that could happen in 10 years. It is extremely unhealthy. But you know what? The strangest thing happened after I got done praying. My tears dried up and immediately I felt at peace. I knew without a shadow of a doubt that God was there with me. He was holding me and reminding me that this was out of my control. So I met Drew and my parents for lunch and we talked about the appointment, and I never felt alone.
The next week we went to the specialist and she informed me that Sadie did in fact have a heart arrhythmia. She said it wasn’t anything to be too worried about, and that most of the time they fix themselves before the baby is even born. This was a huge relief for me as I’m sure you can imagine. She also told us that she would want to see us once a month until the end of the pregnancy just to monitor everything. So, what did we do after we got this good news? We went to Disney World of course!
After our trip, life resumed like normal until my next check-up. I went to my doctor expecting to hear the weird heart noises, but we couldn’t find the heartbeat. She spent a good ten minutes trying to listen to her heart, but she only kept finding what she thought was my heart rate. She took me into another room and did a sonogram. Once she found Sadie’s heart beating, she manually counted the beats. It turns out that she found her rate every time she was looking, she was just confusing it with mine because it had dropped so low. Most of the time doctors like for a baby’s heart rate to be at least 120 beats per minute. Sadie’s was 60 beats per minute. My doctor called the specialist and she wanted me to go to their hospital in Ft. Worth to be hooked up to monitors. I left her office and called Drew. He left work and met me in the parking lot. We drove to the hospital where they hooked me up to a monitor for about 45 minutes. The doctor did a sonogram and said that because Sadie was not in distress that we would just need to come in once a week to monitor her. She also ordered us to get an echo done and have a cardiologist look at her.
We had the echo done and the cardiologist was not worried about her low heart rate at all. She said that Sadie was handling it very well and that we could still deliver in Ennis if we wanted, but that we should still go to the specialist once a week just be safe. We were overjoyed to know that she was safe and that she was going to be okay.
So once a week from that point on I went to the specialist’s office in Mansfield to be monitored. The good thing was that we got a sonogram every week and got to see Sadie. Life went on. When I was somewhere around 30 weeks we noticed that her growth had slowed down. It had gotten down to the 35 percentile (for those of you who don’t know what that means let me enlighten you. It means that she was bigger than 35% of babies for that gestational age). The specialist wasn’t concerned about it. She said they really only ever worry about it if it drops to the 10th percentile and she didn’t think that would happen. So again, we lived our life. When I was 33 weeks along, I went back and Sadie’s heart had fixed itself! We were so incredibly happy. I thought my plan had gotten back on track and everything was going to be so good. But then we measured her. She went from the 35% to the 13%. Now this wasn’t below 10% but it was a drastic drop and the doctor wasn’t comfortable with it. Three weeks later, she dropped even more into the less than 10% range. At this point, the specialist had already assumed my care and I wasn’t going to my doctor in Ennis anymore. She decided that at 38 weeks we would be doing a C-section. You see, when a baby stops growing or getting adequate nutrition, the longer they are in the womb, the higher chance they have of being stillborn. She went ahead and saw me twice a week those last two weeks just be safe.
On November 4, 2015, we loaded our little family up in my car and drove to Texas Health Harris Methodist Hospital in Ft. Worth to bring our sweet little girl into this world. Both my parents and Drew’s parents came at the same time as us. We were at the hospital by 7:45am. I got my gown on and hung out in the room with my family until they came to get me.
My sister came and saw me as well as two of my cousins. Everyone was so excited to meet this precious girl. They wheeled me back into the OR and began to get me ready. I was shaking with nerves and excitement! Once I was ready, they brought Drew in. He was so amazing. The second he saw me he was making sure I was okay and holding me. I can still remember when they said, “Okay, a lot of pressure. She’s here!” My heart was beating so fast. They didn’t tie my arms down, so they immediately gave her to me. As I held her, I just couldn’t believe how amazing she was. She was a little fighter and so strong. God had given me such an amazing little gift.
They were taking her temperature and fixing me up, and that’s when my plans got even further out of whack. The nurse informed me that they would need to take her to the NICU because her temperature wasn’t high enough. I immediately was like “Take her!” Of course my heart was hurting, among other things, but if there was a chance that she needed help then I wanted her to have it. My husband looked at me and we had a moment where we were just comforted by each other. I told him to go with her and not to worry about me. When they were both gone and I was feeling extra good courtesy of my pain medication, they took me to recovery. Once I had been in recover for an hour, my husband came in. He was still wearing his scrubs, but he had brought some visitors. Our families along with our best friends had come to see us. We talked for a little bit and then I made my family leave to go eat some lunch. Reagan went with them. Our friends had brought us lunch, but I couldn’t eat anything. Everything was just so overwhelming. Drew got to see Sadie in the NICU, but he couldn’t hold her. Our family members got to go back one at a time and see her. I got to look at lots of pictures, but I didn’t actually get to see her. After our families and friends had left and I was in my postpartum room, they finally brought her to me. It was 6:00pm when I finally got to hold my little girl. It was the most special moment. She was so tiny. She weighed 4 pounds 6 ounces and was 17 inches long.
We had her in our room that first night. We set alarms every three hours for her to eat because she was so small, but we couldn’t get her to even eat 2 ml. When morning came, the nurse called the on call pediatrician to come and look at her. My mom was on her way up to the hospital to help us with Sadie when they called. I told her she better hurry because I didn’t know if Sadie would be in our room for long. My mom got there and held Sadie for about 5 minutes when the pediatrician came in. She determined that Sadie needed to go back to the NICU and be admitted.
Once they took her, I went into the bathroom with my husband and we cried. We cried from fear. We cried from heartache. We cried from confusion. We cried because we didn’t know what was going to happen. Our plan was to have her and everything go great and then we bring her home. It was never supposed to come to her being in the NICU. The neonatologist came in to see us and told us that she was thinking she would be in there about 3-5 days. The problem was that Sadie wasn’t eating and her body temperature couldn’t be maintained without her having some kind of fatty insulation on her body. She was skin and bones.
We spent much of our time in the NICU when I was in the hospital. We would wake up for every feeding and go see her. It was without a doubt the hardest thing I have gone through in my life. We could only hold her when she was being fed. She stayed in her incubator when she wasn’t eating. If we held her for too long then her body temp would drop. Three days came and went and by the fourth day I was being discharged. Leaving the hospital without Sadie tore my heart in half. I literally felt like half of my heart was being left behind. I cried the whole way home and prayed for comfort. I would see other women who had their babies after me going home with their children and it hurt my heart immensely. I wondered why I couldn’t bring home my little girl. I felt like maybe I didn’t do something right when I was pregnant wit her. I had only gained 20 pounds during pregnancy so it had to have been my fault, right? All of those thoughts began to cloud my mind. It was hard to stay positive, but God reminded me of His love and grace. He showered us with love and he reminded me that Sadie was His child and that whenever He was ready for us to have her that we should be ready. I found comfort in His promise of love and compassion. I began to see that He was still working on her, and it helped me to see things in a new light. I was thankful for Drew. Without his support I would have fallen. I would not have wanted to go through that with anyone else. We grew stronger as a couple. When I was weak he was strong. When he was weak I was strong. Day by day our faith grew. Now, I am not going to say that it wasn’t hard and I didn’t have my dark days because I definitely did, but God restores your soul and He gives you peace. He healed my broken heart and literally pulled me through it.
After the first week, the doctor was convinced that maybe she was just early and I wasn’t really 38 weeks along when she was born. She said that Sadie was acting like a 35 week old baby. They tested her hearing, did a head sonogram to check her brain, and even had speech therapists come and look at her mouth. She checked out in everything. She just wouldn’t eat on her own. She had a feeding tube going through her nose into her stomach giving her the food that she needed. As a parent, it is heart wrenching to see your baby hooked up to so many monitors and tubes, but then I would look around and realize that she was alive and breathing. There were many other babies there that needed much greater help than her. She just couldn’t eat. Her lungs worked and she was healthy otherwise. While we were there the doctor went ahead and sent off some genetic testing just to make sure everything was okay.
Drew had told me that our goal would be to have her home before Thanksgiving. That gave us three weeks. Surely that would be enough time for her to make it home. Everyday for three weeks we drove to Ft. Worth. We tried staying the night one night thinking “Oh, this will be good. We can make it for the midnight feeding and then get some sleep.” Oh, how wrong we were. We got caught in traffic at midnight and were up from 11pm-2am. So in other words, we got no sleep. Plus, us being up there was very difficult for Reagan. She didn’t understand what was happening. All she knew was that mommy and daddy were gone. She was acting out at school and she missed us. We couldn’t bring her with us because she wasn’t aloud in the NICU. So everyday we would wake up and take her to school then drive to Ft. Worth to be there by the 9am feeding. We would stay until after the 3pm feeding and then get Reagan from daycare and head home to be with her.
Now, I tried to breastfeed Sadie, but she had a very difficult time so I would pump every 3 hours to make sure she had enough milk. I would call the nurse at my 3am pumping to check on her. The goal was to have her drinking 45 ml every three hours from a bottle in order for her to go home. Now I will be honest here. I did not think that was going to happen. It seemed impossible, but one day something just clicked in her brain and she began to eat!
On November 23, 2015 we got to bring our little girl home from the hospital. It was the day before Thanksgiving. She was 5 pounds 2 ounces. I sat in the backseat with her the whole way home.
Life was getting back to how I had planned it to be. I stayed home with Sadie and took care of her while Drew went to work and Reagan went to daycare. I had just put Sadie down for a nap when the phone rang a couple of weeks later. It was the doctor calling with her genetic testing results. Now, like I said earlier, I am a little bit of a worrier, so of course the testing had been in the back of my mind since the day they sent it off. But Sadie was doing so good. She had put on some weight and I was convinced they weren’t going to find anything with her testing. So imagine my surprise when they told me that they found an abnormality with her testing. Talk about being blindsided! I felt like the floor had been ripped out from underneath me. They scheduled us to come in the next day for a consult. Of course I had another crying moment when I was talking to my husband, but we reminded ourselves that God had gotten us this far. He knew what he was doing and His plan happens for a reason.
So we went the next day to the consult. We found that Sadie has something called 8P23 Deletion Syndrome. Yes, it is a very confusing name. But basically, she is missing part of her 8th chromosome. This can lead to learning disabilities, behavior problems, impulsiveness, and possible heart problems. Everything began to make sense. Her heart arrhythmia, her feeding difficulties, and her low birth weight were all caused because of her syndrome. Her geneticist ordered another echo to be done on her, so a couple days after our consult we got her looked at. Turns out she has what is called an ASD (Atrial Septal Defect). Basically there is a hole in the wall of her heart. This is different from a murmur (because she also has a small one of those), but don’t ask me how. Her Cardiologist has said that he isn’t quite sure what type of ASD she has because the placement is strange, so in June we go back to get it looked at again. Once a week a very nice woman who works for ECI (Early Childhood Intervention) comes out to see Sadie. She is doing very well! You will be happy to know that cognitively and socially she is scoring well above her age. Her motor development has been lagging behind, but she is catching up quickly. When she was born she was in the less than 1%. Now, at four months old, she is in the 12%. She is growing so fast. She smiles and coos at you. She has rolled over twice! And she can sit up so much better and control her head.
It has been a long difficult road, but God remained faithful and strong the whole time. He constantly comforted us and showered us with His love. He showed us his mercy and that He has a plan, but more importantly, He showed us that His plan is the one that matters. I had a plan. I was going to have a healthy pregnancy, deliver a healthy baby, and bring a big strong baby home from the hospital. What I got instead was heartache, difficulty, and the biggest blessing I could have ever gotten. God transformed my heart. He helped me to see that control isn’t everything and that I needed to give up control of my life. He taught me the value of faith and perseverance, and he taught me that sometimes things in this life are blessings and we don’t even realize it. God has a deep faith in us. We are the ones that are slacking. He offers a promise of hope and grace we just get so clouded in our own minds that we miss it. Sadie has problems, yes, but she has never been more perfect in my eyes. She is living and breathing and that in itself is a major blessing.