Even though it has been six years since our story began, it all comes back to me as if it was only yesterday.
My story began eight weeks into my pregnancy with my second child. I was diagnosed with placenta abruption, a condition where the placenta separates from the womb, and put on bed rest. This meant that for four months I had to lie on my back at home. I was only allowed to get out of bed to shower. Lying there, my days consisted of feeling the baby move around and praying that I would make it to at least 24 weeks gestation. At that point of gestation a baby is viable. Until then, nothing could be done to help us.
At just over 23 weeks I was lying at home, 15 weeks into my bed rest, and felt a large amount of discharge. Praying that I wasn’t hemorrhaging, my mom rushed me to my doctor’s office. The doctor took one look at me and rushed me to Iowa City. Upon arriving at UI Hospitals & Clinics, I was greeted by a room full of experts waiting to take care of my unborn baby and me. I was so relieved to be there. Finally, I don’t have to go through this alone. I have at least 10 people by my side ready to take care of my every need. A weight was lifted off my chest. They made me feel so comfortable and treated my whole family as their family.
The doctors determined that my water had broken. They gave me a dose of steroids for the baby to help develop her lungs faster and watched me so that I didn’t come down with an infection.
As complications mounted, it was time to separate my unborn baby and me. At 24 weeks and 1 day, my little girl was born by cesarean. When asked what her name would be, there was no doubt in my mind that faith in the Lord had got us this far and faith in the Lord is what will continue to get us through this. So Faith is her name.
I remember just before they took me in to surgery, the doctors wanted to know what we would like them to do for Faith once she was out of the womb. Being naive at the time, of course we said to do everything possible for her survival. Not even thinking that something could be really wrong with her. I just felt in my heart that everything would be okay. She has fought so hard for this long; she deserves every option available to help her once she is out of the womb. God had given me this amazing little girl for a reason and I would watch over her and care for her the best that I could for as long as I was allowed. No matter what the outcome would be.
She only weighed one pound, one ounce when she was born. She was so underdeveloped, especially her lungs. But before she was whisked away to the NICU she let out two tiny little cries and I knew she was going to continue the fight of her life.
I wasn’t allowed to see her until the next day. My husband brought pictures of her to my room that night. She had a lot of tubes and cords on her but she looked good. I was so excited to see her the next morning! One look at her in the little heated baby bed and I couldn’t believe my eyes. I had never seen a baby so tiny before, she actually felt so much bigger in my uterus. I just had to sit and cry. I felt like this situation is so unfair, Faith doesn’t deserve to start her life like this. After months of waiting and wondering … and now she was finally here, but what a struggle she has ahead of her.
Everything just started crashing in on me. After spending more time in the room with her and talking to the doctors, I knew I had to be strong for her. I was her mom and I wasn’t about to let her down. There was some anger and of course the “Why me?” question. But for some reason I was chosen by God to be the mother of this amazing little girl. I had to step up and do my job.
The first challenge was what the NICU doctors and nurses call the “honeymoon phase”. Newborn babies seem to do well for about three days. Then some start to get weaker and eventually don’t survive. After the first three days, a preterm baby is more likely to survive. We got through the first three days. All we could do was talk to her softly and touch her hands and feet as she pressed them up to the plastic that her bed was wrapped in to keep the heat close to her body. Her skin was like tissue paper at this time. The medical team didn’t want Faith to use her calories for keeping her body temperature up, so she had to stay in her heated bed with plastic around her at all times.
I tried not to think too many days ahead. The doctors and nurses had told us that there will be good days and bad days. They kept me so informed with the good news and the bad. If I didn’t understand something, the medical team would explain it again and answer all my questions. I never felt like anything was being withheld from me. I appreciated knowing everything about Faith, even though at times it made me worry more. At least I had the information and knew – maybe -- what to expect.
The next few months were very stressful. I still don’t know how I did it all. I guess you just set your mind to it and don’t look back. As a parent, once you have children, life is no longer about you. It is about sacrificing your wants and needs to fulfill that of your child’s. As many parents did in the NICU. Talking with other parents there about their situation really helped me. It reminded me that I’m not the only one going through tough times; another parent is worrying and praying just as much as me.
Not being able to hold Faith for the first three months was so hard. I was so concerned I wouldn’t be able to bond with her. Did she even know that I was there and I was her Mom? Did she think I was just another nurse coming and going? It about crushed me. Having a connection with her and not knowing if it was being returned was so hard. Our family recorded some books and messages on a CD so Faith could still hear our voices when we weren’t there. I tried to be with Faith every Wednesday and Thursday by myself and every weekend we went to see her as a family. We tried to do as many cares for her as possible when we were there. We also tried to make the room seem more like a home by coloring pictures and taping them to the walls and her bed. We put window clings on her door during the holidays. I made her a blanket and pillow that we kept in her room. If nothing else, it made me feel as if we had left a part of us there with her.
Looking back, I really don’t think she knew I was Mom. It wasn’t until we took her home, after six months in the NICU, that I think she finally realized I wasn’t just another nurse coming and going. It hurt at first but she has made up for lost time. She is such a momma’s girl! Everything I could have hoped for. The connection between us is wonderful.
During Faith’s six-month stay at U I Children’s Hospital, we had a lot of wonderful doctors and nurses. Faith even had her favorites. They treated her like their own child or grandchild. The connections and friends we made were amazing. Of course, there are always a few people you don’t connect with, and that happens at UI Stead Family Children’s Hospital, too. Maybe it was bedside manners or lack of compassion for Faith during cares. The nurses had told us that we had to be Faith’s voice: whatever we saw she needed or was uncomfortable with, we needed to speak up. Everyone was so accommodating to Faith and our two-year-old daughter who came to visit on the weekends.
On my Wednesday visits, I so enjoyed being visited by one of the pastors at the NICU. Pastor Goldfish would come and see me, and we would sit and talk about Faith and her progress or her bad day and afterwards we would pray for her. It always made me feel as if I had an extra angel looking over us.
Our early days of staying in Iowa City were made possible by having a room at the Ronald McDonald House. What a blessing. The staff is so accommodating. It allowed us to be close to Faith but yet have a room away from the hospital. We could watch TV, have a great hot meal, sit and relax and meet other parents going through a very tough time in their lives also. We told our story and the other parents shared theirs. It was almost like therapy. It was even better on the weekends because we had our two year old with us and she could play. We tried to keep life as normal as possible for her. We are so indebted to Ronald McDonald House that we still visit and send donations.
We took advantage of everything offered to get Faith on her way and ready to go home. Another program she really enjoyed was the music therapy. A lady would come and place a CD in her room that would have songs on it that would stimulate Faith but not too much. She has really turned into a music lover; I wonder if it all started back then.
After many weeks of good days and bad days, we were given the news that she could go home. This news always comes with very short notice. We were so excited! I was so ready to get her home and to finally be a family. Faith wasn’t one of the lucky ones who was off her feeding tube and oxygen when she went home. I wasn’t concerned though. I though once she was settled and home everything would change and she would be off all that in no time.
Boy was I wrong. I was so overwhelmed by it all. Not only did we have the oxygen tanks, apnea monitor and feeding tubes to worry about, I had five or six medications to give her each day. Plus take care of a two year old. Talk about being stressed. And to make matters worse, it was cold and flu season. I couldn’t take Faith anywhere and I couldn’t go anywhere for fear of getting a cold or Faith getting RSV and ending up in the hospital again. This house arrest lasted for another six months. The cards we received from friends and family helped but I really needed a break before I wasn’t worth anything for anybody. We had a hard time finding a nurse to come to the house because we live in such a rural area. But finally I was able to have an afternoon to myself or to play with our two year old. It brought much relief. Don’t try to do it all on your own. Take time for yourself or you will lose yourself and possibly your mind if you don’t have some down time.
My story has a happy ending. Faith is now six years old and heading into first grade. She has no handicaps from being born so early. She is still a very feisty and head strong little girl. She is our miracle from above but a large part of that miracle was all the care and knowledge of the doctors and nurses at UI Stead Family Children’s Hospital.
May God bless you and give you the strength to get through your challenging time at UI Stead Family Children’s Hospital.