Baby Gracia and her sister before she became ill
Tell us about sweet Gracia, your reason for starting For the Love of Grace, before she got sick…Gracia was the sweetest little baby. She was born full term weighing 5lbs 11oz, healthy, normal, the happiest baby. She rarely cried, even when hungry. She would just move her head from side to side saying “uh,uh” searching for food. She smiled all the time and loved to make sounds as though she was talking to us. She was very loved by her brothers and sister (even though Angela was only 17 months she showered Gracie with love). She would just stare into my eyes all the time.
What happened that made you first realize Gracia needed to go to the hospital?
Gracie was sick with what seemed like a cold. All of the kids had it. She was congested, coughing, not sleeping well, not eating as much. She had it for about two days when I noticed her diapers weren’t very wet. There were signs that she urinated some, but not much. I called the nurse line and they said that it didn’t seem as though she needed to come in that night, but instead we could wait until morning and see if she had wet diapers then. She slept horrible that night. I tried to nurse her again and get her back to sleep while I tried to get some rest. As I was resting next to her I felt her twitching. I rushed her to the bathroom so I could better see what was going on. I didn’t know it at the time, but she was having a seizure. Her eyes were rolled back in her head and her little arms and legs were twitching uncontrollably. I immediately called the doctor and they seemed as though it was no rush and told me just to bring her in. I was so scared as I drove her and Angela to the doctor’s office (which was about 10 min away). As I was driving, Gracia’s eyes began rolling back in her head again. I would call her name loudly and snap my fingers in her face and wave my hand and she would seem to come back to. This happened repeatedly. The entire things was so scary. Nike
was at school so I was alone in whatever decisions I made. The doctor saw her right away, although it wasn’t her regular doctor. He checked her oxygen levels and they were above 90 which is where they should be but her tiny little chest was rapidly going up and down. He thought she maybe had pneumonia and said I should drive her to Children’s. When we got there we had to wait to be seen in the emergency room and I almost lost it! I was so anxious to have her seen! When the nurse called us to check her vitals she saw how pale and bad she looked and took us immediately back to a room where the doctor came in shortly after. They did a nasal suction test to see what she had along with hooking her up to all of the monitors. Not long after we were there her oxygen levels started dropping some and they transferred her quickly to a different room. Everything was so crazy and fast, all of a sudden I was supposed to kiss her and move out of the room while she was surround by about 10 different people, including people who had on flight for life uniforms. A doctor that hurried me out of the room told me that they would have to take over breathing for her. Everything went blank for me. What exactly did that mean? Why couldn’t I stay with her? Was she going to be okay? I held back the tears and remained calm for Angela (19 months now), but it was difficult. I struggled to try and get a peek through all of the people working on her, but they then showed me to the waiting room. It was such a difficult time, I remember this moment the most (because God allowed me to be numb to some of the pain as she was dying). From here she went to the ICU and had to undergo many tests. She had blood tests and a CAT scan along with the nasal suction. These determined that her kidneys were not working, she had RSV, and her electrolytes were way off in her body (from her kidneys not working). She was unconscious, incubated (a tube down her throat), she looked nearly lifeless. She spent two weeks in the ICU undergoing surgery for dialysis (twice) and slowly getting better. We were then moved to the fourth floor where we spent four more weeks. Total while we were in the hospital she had two blood transfusions, surgery twice for dialysis, a CAT scan, an MRI, an EEG, an EKG, a spinal tap, numerous blood draws, she was incubated, she was on oxygen the majority of the time, and she had her eyes dilated twice.
What was it like to have Gracia be hospitalized for so long?
It was difficult for our entire family. The first night we (Nike, Angela, and I) were all able to stay with her since the boys were at their other parents’. The day after she was hospitalized we were told that they didn’t know how long she would be there, but to expect to be there for awhile. Nike and I discussed how we would work out who would stay with her and I told him I didn’t know how I could leave her. At first we thought we would take turns, but Nike realized how difficult it was for me to go and he agreed to let me stay while he took care of the other kids at home. It was also difficult for Nike to stay with her since he had lost his son five years prior to Gracie. Nike said he never thought we would lose Gracie since he had already lost a son. I went home that day to take a shower and get clothes for the duration. This was one of the only times I left her side (the other was a time when Nike couldn’t pick up Kaleb from school). Nike had to start cooking dinner, cleaning the house, getting the kids ready for school, and maintaining some sort of routine while finishing the last two weeks of the semester (we were both in school, but I was able to incomplete some of my classes, while others I was just given a grade early). Sometimes I would have to watch Angela while in the hospital, but this was looked down on since I was not supposed to have other children with me without another adult to take care of them. Also, since Gracie had RSV we all had to wear full splash guard outfits including masks and shoe covers. Being in the ICU and her having RSV also kept the other children away. They didn’t want kids bringing sicknesses into or out of the ICU so they limited them coming to visit her (now they don’t really even allow kids to visit in the ICU, especially during flu season). Life became only the hospital for me. I rarely was able to shower, never went outside, we had no friends to visit us, the family we had lived in Cheyenne and were unable to visit, I was hardly even able to eat. It was lonely, not only for me and Gracie, but also for the rest of the family at home. We were so used to being together, doing everything together. Now Nike had to stop working to take care of the kids and run the house alone.
What were some especially difficult hardships you and your family faced while Gracia was hospitalized?
Not being able to see each other was especially difficult. It was very lonely and dreary in the hospital. Also, Nike having to stop working to care for the kids made it so we couldn’t keep up on our bills. We searched everywhere for assistance, but found none. Since Gracie was undiagnosed we were not able to find places to turn to for assistance. The social workers at the hospital had no ideas for anywhere we could turn either. Finally, we were told of a fund called the Concern for Others. It was an anonymous fund that was a little difficult and time consuming, but we were finally able to get help.
What made you feel called to start For the Love of Grace?
While in the hospital I had plenty of time to think about things. I would often read the Bible and just think about our lives. I felt that we needed to start reading the Bible as a family and to do more service projects together. God was working in me tremendously during this time. Although difficult, it was a great learning experience for me as I was able to stop the busy everyday activities and just reflect on life. After she died I felt God calling me to help others in our situation. With being so lonely and having nowhere to turn I didn’t feel other families should have to go through that while being in the hospital. It’s bad enough to have to take care of a sick child, but to also worry about how the bills are getting paid is awful. I also felt God was calling me to be there for parents in need. You have no one to talk to day in and day out, except for the occasional nurse or doctor. God was using our difficult situation to open my eyes to assist these families not only financially, but also emotionally. God continually laid on my heart what my next step would be. Since I was in school I was able to change my degree from Marketing to Nonprofit Administration to give me understanding of exactly what God wanted from me. One day out of the blue God gave me the name of the nonprofit. It was perfect because God showed me His grace during this difficult time as well as His love for Gracia (and our love for her of course). He would continually show me the way for the organization and exactly what He wanted me to do. When I first opened it I had no idea what how we were going to get money, but I asked God to show me. Out of the blue I received a call from someone we barely knew wanting to throw us a fundraiser in which we raised more than $1200. This is how the organization has gone. God is continually showing me amazing things that He can do. I am just a tool he is using along the way, thankful to be a part of it.
What are your goals for this organization?
I am open to wherever God wants to lead me. I know we need more face to face interaction with the families in the hospital so I can better serve their emotional needs. God has given me an intimate perspective on what these families are going through and I can use that to help someone who is struggling to deal with their child being in the hospital. Also, while in the hospital I mainly prayed for God’s will to be done. This allowed me to better handle whatever it was that God wanted to do. I can hopefully pass this on to other families so they are able to feel God’s grace.
(anything else you would like to add)
I feel so blessed to have the Lord in my life, especially while having to deal with the death of my daughter. I can see how people go crazy after losing a child. God has truly been so good to us through it all. We keep turning to Him in praise and it has made a tremendous difference in how He carries us through. Just after she died I felt God laying on my heart that I needed to thank Him for her death. It was so difficult to do, but so rewarding. It release so much that I didn’t even know I had weighing on me. He is truly amazing and I am thankful to have had and lost my little girl so I could learn so much. Also, I wouldn’t be able to help these families had I not gone through what I did. I would have no idea that the Children’s Hospital had so little support for families like ours (they mainly outsource which is not ideal for most families).