A Story of Faith

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I am very lucky.  I have two healthy babies who have never had any major health issues or struggles.  However, I know this is not the case for many other mothers.  I often think about how difficult it would be to have to deal with a family member with health issues and find myself admiring those who spend their lives in the service of those loved ones who need their help.  I asked my sister to write this post, and as I read through it, I was so touched.  Here is her story:

My sister asked me to write about my youngest child who was born very early and continues to have significant health problems.

I have a large family and my first babies were born full-term and very healthy—I definitely took their good health for granted. My last two babies have had more problems. My second-youngest was born quite small at 4.5 lbs and had a benign tumor on her tailbone that needed to be removed right away. After four very stressful weeks in the hospital I was thrilled to bring her home and I’ve been trying to get her to gain weight ever since. Fortunately she is now healthy except for being small.

My last child was due on February 12, 2008. I was thrilled to be pregnant after two miscarriages and everything was going so well. I actually felt concerned that my life seemed to be so easy. When I was 23 weeks along, I started to feel a little sick but taking Tylenol helped me feel fine. I started to feel very pregnant however—more like 9 months instead of 5 months. I tried to lie down more so I could get over whatever I had. 

Then, after a few days, I started having contractions. I called the doctor who was very skeptical that I was actually in labor because of all my previous full-term deliveries. He suggested I had a bladder infection and I should go to Insta-care. I went and, sure enough, I had a bladder infection…and I was dilated 4cm. So they called the ambulance and we ran about 10 stoplights getting to the hospital in record time. But it didn’t help. The infection had gotten into my placenta and my very efficient body had decided to get rid of it. So shortly after 1am on October 20, 2007, my baby was born at 23 weeks gestation with her body full of my infection, weighing 1 lb. 5 oz and 11 inches long. Her eyes were still fused shut and her skin was almost transparent.

1 Day Old:  I didn’t get to hold her until she was 2 months.

It was a very scary time for my husband and me. My OB was actually quite comforting that morning after my baby was born. He has lost two children himself and he told me that some babies are meant to live and some aren’t. He felt it was completely up to God and doctors can only do so much.

My baby ended up staying in the hospital for 5 months. But that sentence doesn’t even begin to describe the experience we had. It was such a rollercoaster of emotions. One day she was doing great, the next day she was doing terrible. When she was 11 days old, she had to get an emergency surgery for a perforated bowel. The surgeon came out of the surgery and told us, “That surgery took 10 years off my life.” It took 10 years off my life too. They called her the “scary baby” in the NICU for a while—they didn’t know if she would make it or not. 

During those five months she went back and forth between the local hospital and the children’s hospital. (Our family had 7 ambulance rides that year—four for her, two for me, and one for my son who got hit by a car.) She had laser surgery to save her retinas, another surgery to close the valve between her heart and lungs and another surgery to put her bowels back together. We were so happy to finally bring her home on March 22.

In many ways, our baby has done very well. She has some developmental delays but she can walk and talk. Babies born this early have a high rate of autism but ours doesn’t seem to have this problem and she is actually a very social child. She can also see and hear well. The major fallout from her premature birth was her kidneys. When she was so sick, her kidneys probably didn’t get enough blood flow and they just haven’t grown. Kidneys big enough for a 1 lb baby definitely aren’t big enough for a 24 lb one. Currently her kidney function is at about 7.5% and she needs a kidney transplant. I have qualified to become a kidney donor but my blood type doesn’t match hers so we have to do what is called a “paired donation” or basically a kidney swap involving a lot of other people. We’re still waiting for it to all work out but it should happen in the next several months. Kidney disease causes other problems which I hope will greatly improve with a transplant.

So how have I coped with this ongoing challenge in my life? There are several things that have helped. The biggest help has been my religious faith. Especially when she was in the hospital, I prayed so many times and I almost always received some kind of answer or peace that helped me feel better and not go crazy worrying about my baby. This whole experience has helped me be so much stronger spiritually. I was struggling with my faith right before this happened but these experiences have made a big difference in my faith. I also appreciated when people would tell me that they were praying for her.

Another thing that has helped is being grateful. I don’t have to look very far to see people that have problems that are bigger than my own. It seems like there are so many families dealing with medical issues that we didn’t really understand or appreciate before. It’s like a completely differerent world that I never knew existed. I’m also grateful for a very supportive husband who helps me a lot. All of the children adore our baby and she helps unify us as a family. We’re so grateful for her and she is so easy to love.

Her medical team is also great. At the kidney clinic, they know you’re going to be seeing them forever—our baby will be seeing a kidney doctor once a month for the rest of her life—so they become your friends. After doing blood work (the worst part), we see a nurse, a dietitian, a social worker, and the nephrologist. I can email them with questions and I really appreciate their willingness to go the extra mile for us.

I don’t know what our future holds, but most of the time, I’m optimistic. My daughter has a challenging life ahead of her. But we’ve gotten through some hard times before and we can do it again.

Cami: 2 Years Old!