This will be the most difficult of stories to share for me. This story will be about my daughter Amelia. It is one of faith, fear, truth and difficulty. Today Amelia is a thriving 3 year old beautiful little girl. She makes my heart sing. The day I gave birth to her via c-section was the day her battle began.
I realized the morning of August 15, 2013 that she was not moving in utero. I knew her schedule really well. I was at work and it was almost noon before I decided to drive myself to the hospital at the push of my coworkers as well. When I got there I requested that they monitor her and explained what was happening.
She was born two hours later.
Struggling to breath, they took her away as I lay on the table in surgery. That is when everything went black. I woke up later, not sure how much time had passed, they brought her in on a gurney hooked up to many devices. Later I hear from the doctor who drove the ambulance 80 miles per hour to get there that she needed special attention and if she had not gotten it, she would not have survived.
I got to hold her hand for two minutes before she left for Cardinal Glennon Children’s Hospital. I spent 48 hours at Saint Anthony’s til I was given permission to be able to leave the hospital temporarily to go visit her. She was very swollen, discolored and struggling on her own. It took another 48 hours for them to release me from the hospital. I stayed with her as much as possible.
While Amelia was only five days old they placed her on life support to aid her weak lungs in pumping oxygen as well as her enlarged heart to pump blood through her body. A machine known as ECMO was used for two weeks as she showed only minor improvements to her lungs. They said this machine could only be used for a maximum of two weeks. They would have to take her off no matter what after that. I knew that God was with her and I had so much hope and so little fear that He would protect her.
My faith was tested at this time, five days before they removed her from life support, they said that she is just not improving as much as they had hoped and the prognosis was not very good. That day I spent crying out to God and praying that he would put his hand on her and heal her. Driving home, I noticed in the clouds, a hand covered over the sun. It was at that exact moment I knew God was there and was about to do something amazing.
On September 4th, 2013, Amelia was taken off life support and had to do this on her own. By the grace of God, she showed the doctors every day that she was a fighter and medicine was reduced every day. Taking her off all the sedatives and meds required a slow wean but she thrived and improved every single day.
I’m on edge every day wondering what to do with myself and how to even start making a connection to Amelia. I believed that she knew when I was in the room. Any time the doctors did their rounds and I came into the room they would say how she moved or her heart rate changed. I knew that we had a bond even with all the sedatives and wires and pumps. She knew when I was there. Never underestimate babies. They are the closest replicas of purity and righteousness.
She tried to open her eyes for the first time on September 7th. It was amazing to see her trying to look at me. I would read to her just so she could hear my voice. I would sing along with the radio as well.
As the days went on we saw her fluids reduced due to all the medications flushing from her body. The cardiologists were tracking her heart and were finally seeing results and the wall of her heart started to get thinner. It wasn’t until a year later that her heart was completely healed and we no longer need to see a cardiologist!! God blessed this exciting day!
Amelia continued to stay in the NICU on an intubation tube for another week after she was removed from ECMO. It was not until she was four weeks old that she was removed from the intubation tube and breathing on her own. This was also the day that I got to hold my baby for the first time.
She was still on a cpap for oxygen and an NG tube for feedings. She was on a continuous feed of breast milk that I had pumped while she was on ECMO. She was completely sustained by IV on the ECMO. Due to depression and lack of production, I decided to stop pumping after 4 weeks. We were finally able to start trying bottles. Amelia did not approve of anything touching her face. She had developed a very strong aversion. However, we tried continuously to get her to take a bottle. Once the doctors felt she was well enough to go home, the only thing holding her back was her ability to eat.
Since she was not interested in taking the bottle, we were left with the choice of keeping an NG tube or getting surgery for a G-tube. This would go through her belly directly into her stomach. Four weeks after surgery she would get a G-button.
The struggle is still real with feedings today. It is still a supplement for her since she has selective eating habits. One day she will eat well by mouth and other days she may eat very little or nothing at all. If she is sick she refuses to eat anything. There is no forcing her or making her. I’ve decided that force is never an option. I decided this because it never comes out the way you want it to and scars the person for life. Although, I remember a funny time when I was forced to finish my green beans and didn’t like them so I threw up my whole meal back on the plate after taking a bite. Take that mom! (lol)
Amelia was exactly three months old when she came home on November 15, 2013. God Blessed me with a wonderful mother, Tammy, who graciously agreed to watch her while I worked full-time for her first year. It was during this time that I researched into any aid I could find to help me without going bankrupt or quitting my job. We were able receive weekly and monthly visits from professional physical therapists, occupational therapists, special services and speech therapists through a First Steps program.
We also were able to get qualified for a home healthcare nurse (Erin) for Amelia while I was at work. This has been a huge blessing for our family and absolutely integral to my ability to function as a single working mother. Erin has been absolutely awesome to work with and Amelia loves her! God surely was working out things for our good.
Romans 8:28(NIV) And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Now Amelia is still dealing with break out seizures and her Cerebral Palsy (encephalomalacia). These diagnosis cause delays in her development but you would never think there was anything wrong with her.
Update February 23, 2017
If you have a child with any condition and would like support or pointers on how to do things please let me know! I am great at finding resources, offering advice and love making friends that I am able to support or encourage! It is not an easy path. God did not give us these children because we are strong. He gave us these challenges to see what we will do with them. How we will handle them for His glory and honor! It is not for us to know His will.
If you have lost a child to a condition, please know that He is with you and he loves all those involved. Especially your child. It is through these storms that understanding or reason has nothing to do with it. Don’t allow anger and spite to consume your joy. This world is troubled and we will see heaven if we remain faithful to Him who loves us.
Romans 8:37-39 No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.