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The Miracle Moo
I’ve thought a lot about how to tell her story.
M was born with five heart defects, a CoArctation of the Aorta (COA), Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD), Mitral Valve Cleft (MVC) & a small Left Ventricle (Small LV).
She was also born with three gastrointestinal defects, Tracheoesophageal Fistula, Esophageal Atresia (TEF/EA) & Duodenal Atresia (DA).
Eight birth defects, life was against her. But God was bigger. God has a purpose for her. God has bigger plans. God had miracles for us. SO MANY MIRACLES.
1. At 19, I was diagnosed with Endometriosis. I had more than a handful of doctors tell me I would either never have kids or struggle with fertility. But on Black Friday in 2010, the stick came back positive. MIRACLE.
2. At 31 weeks pregnant, I bit my tongue so bad, there was blood everywhere. We went to the ER. There really wasn’t anything they could do for me, but T brought up my intense back pain. They sent me up to L & D just to be safe. I was in fact, in labor, but they were able to fully stop it. She would have been born with immature lungs on top of the eight birth defects had they not stopped the labor. MIRACLE.
3. While we were there, they got the results of an ultrasound I had earlier that week. It showed that I had PolyHydramnios due to her having DA. They sent me to MFM for further testing where they saw that she had an ASD. They told us these two disorders are extremely common with Down Syndrome. They told us to expect her to have it, but she didn’t. MIRACLE.
4. After two weeks on bed rest in the hospital, T decided to go back to work. I was only 36 weeks and 4 days, so we thought we had more time. And we definitely needed the money. He couldn’t sleep after he left me. He was so worried. With his phone dead, he took off from his parents house to return to the hospital. He got lost and no one knew where he was. Some how, he just continued driving and God led him back to the hospital in time. MIRACLE.
5. They said that when my waters broke, it would be a large rush of water. For some reason, mine came out in a trickle. If they came out rushed, her cord or her arm could have come out first cutting of her oxygen and causing even more damage to her tiny body. MIRACLE
6. After more than 36 hours of trying to deliver her vaginally, the waters just wouldn’t fully pop. My OB checked my cervix and gave the go ahead for her resident to manually pop them. The resident wanted to check for herself before she went to break them, but she felt a heartbeat. This meant the cord was below M’s head and would come out first cutting off all oxygen. MIRACLE
7. They scheduled an “emergency” c-section for 30 minutes later, at 430pm. Because she had DA, they went ahead and tested all of her major organs. Generally, when you have a newborn, they don’t do more than a puls-ox. Sometimes they don’t even do that. If she hadn’t been tested, we would have brought her home and her COA would have killed her within 42 hours of birth. Having DA saved her life. MIRACLE.
8. When she was born, the left side of her heart had stopped growing at 20 weeks in vitro. It was not pumping blood at all. At 730pm they told us, they were going to do everything they could, but that she most likely wouldn’t survive. If she did survive, she would never run or jump or go to a regular school like regular kids. First thing the next morning we had her baptized. Her LV was still small, but it had started working. His exact words, “There is no medical reason this happened. This shouldn’t have happened.” MIRACLE
9. The air flighted her to Detroit Children’s, where they gave her a shot at life. We were still unsure if she could handle the surgeries or if she’d survive just traveling there. But we had so much hope, we held on to that. She made it through her first surgery. MIRACLE
10. We dealt with a lot of coding, a lot of desats, multiple transfusions and as a last ditch effort, two rounds of ECMO. After 20 days, they couldn’t wait anymore, they had to perform her heart surgery to fix the COA. Six hours of not knowing if she’ll even make it out of the OR, but she did. MIRACLE
11. After her heart surgery, we couldn’t extubate her. After 35 days, they said if they couldn’t extubate her that afternoon, the were going to have to trach her. She still needed a high flow PEEP through a cannula, but they finally succeeded. MIRACLE
12. 70 days in the NICU, they were finally ready to let us go home. I ended up needing an emergency procedure to remove some gallstones. When we got home T was getting ready for work. I felt so weak, I went into the bathroom and threw up what looked like coffee grounds. On the way back to our room, I collapsed and couldn’t even lift my head. We called an ambulance. I was bleeding internally, hours from death. The closest to death I had ever been. If T had gone to work, he would have come home to a dead wife, and possibly dead baby. MIRACLE
13. Years later we discovered one of her holes had closed up on it’s own, even though it shouldn’t have. It was one less thing that she had to have fixed during her second open-heart when she was eight. MIRACLE
Being told your child is going to die, knowing that they will stop her heart in order to fix it, and there is a chance it won’t beat again, is something you truly can’t imagine until it happens. It’s soul crushing. It makes you feel empty and full of pain at the same time. Your brain goes numb but your whole body aches. Your heart beats hard. And your negative thoughts shoot out through your head. It consumes you. Moving, eating, living becomes so hard that if other people don’t push you to take care of yourself, you won’t.
When I was pregnant, and we were told that she was going to have birth defects, it was terrifying. We were preparing for a healthy baby. We had no clue how to be “nurses”. It was like graduating med school, without taking any classes. Ok, maybe not exactly like that, but you get the idea. We weren’t prepared for this.
When she was born and whisked away from us with a kiss, it hurt to see the other mothers in recovery with their babies. It felt empty back in my hospital room alone. And when we were told she wasn’t going to live, we cried. We didn’t want to lose her, but I’m not sure I ever really felt we would. Or maybe we just didn’t have enough time to even process anything. There was always something next to get through. We didn’t have much calm. She really loved keeping us on our toes with her breathing.
During her six hour long heart surgery, T slept so he didn’t have to feel it. I cross stitched a little bib for her and watched the game show network to distract me. I didn’t take many calls, because I couldn’t handle comforting other people. I wasn’t strong enough to be that person for them. At that time, I was the one who needed the support, and I think God was that for me.
It’s like God just guided me along during those times. Times when she had to go to the ER, or go by ambulance to the children’s hospital or stay for weeks at a time due to yet another illness. People always comment on how strong I am, but I never felt that way. When you have literally no control over what happens, all you CAN do is lift it up.
That pain just empties you and weighs you down all at the same time. It’s a hole you’re desperate to fill, but nothing can really fill it. Like you’re starving, but no matter what you eat, you’re still starved. I couldn’t see clearly. I couldn’t see a happy ending. I think I was afraid, if I envisioned a good result, that it wouldn’t come true.
I was in complete cruise control. It must have been God taking my wheel, because I some how ended up at church. I joined a women’s bible study, and the community and faith slowly lifted the clouds and pain in my heart. I was still so so scared, but I knew that God had M in his hands. It wasn’t just the surgeon in that operating room, God was in control. And again, God saved her.
She’s thirteen now. She’s beautiful, kind, passionate and perfect. I might not ever understand why God let us keep our baby girl, but I will spend the rest of my days thanking him. Thanking him for making me her momma, for giving me my miracle, and for giving me a new best friend.
