The life story of a Miracle Crystina
"As we call her Nina"
Her
dad and I had been married for 2 years and together for 3 and
half years. We had already had one child, a son. He was born
healthy and at a good weight. So we were happy; we were having
another baby. We were hoping for a little girl, because we
already had a son. I became pregnant in April of 99. I found out
in May of 99. I was 19 years old and my husband was 21 years
old. None of us had any medical problems in our family. We were
both healthy and took very good care of our selves.
Anyway, a week after I found out I was pregnant, I stared bleeding. I went to the doctor, who gave me a sonogram and drew some blood. Two days later, the doctor called and told me I needed to start taking progesterone shots in order to keep my pregnancy. So I started the shots 3 times a week until I was 15 weeks pregnant. I had blood drawn every week to get my levels tested. The shots hurt really bad and made me feel like crap the rest of the day. I had all my regular check-ups as well.
Everything was good until 26 weeks. All my blood work was normal, but I wasn't growing. By 26 weeks I had only gained 10 pounds, which was very odd for me since I had gained more than 60 pounds with my son. Anyway, I went for a sonogram at 26 weeks because I was measuring very small. At the sonogram, I found out that Nina was IUGR and she had a bright spot in her heart. She also had a hole in her heart. The doctor told me that all babies have that and it closes in a couple of months after they are born. The doctor also said that she might have Down's syndrome, because that bright spot is a sign of that syndrome. I told the doctors that I was okay with everything they were saying and I still wanted to keep her and we can find out what she has when she is born.
The doctors saw me every two weeks after that. Everything was ok until 34 weeks when she stopped growing and the placenta started shutting down. Crystina was starving then. They decided to go ahead and set up a delivery date of Dec. 26. I went into labor on the 22nd of DEC. at 5 am. I went to the hospital and they started inducing me. Everything was going ok. Nina was handling the contractions very well. That was until they broke my water at 5:30pm. When they did that everything went down hill. Her heart rate would drop and then go really high.
I was finally able to push at 8:50pm. I pushed for 5 minutes and she was born. She wasn't breathing, they had to do CPR on her. She came back strong and was crying like crazy. I was bleeding like crazy. The doctor had a really hard time to get it to stop. I became really sick. I only held her for a minute. I didn't see her again until the next day. She was very little, but very healthy. They tested her for Down's Syndrome, but she didn't have it. They also gave her a heart echo. She did have a hole in her heart, but the doctors said that was normal and it would close in a couple of months. She also had a heart murmur, but that was causing her no problems. They told me to have a follow-up at 2 weeks old. We were very happy with the outcome. Not knowing what we had ahead of us in the long run.
She stayed in the nursery with all the other healthy babies. She was the smallest baby in there. She weighed 3 pounds and 14 ounces and was 16 3/4 inches long. We had to leave her in the hospital because she was very small. The doctors wanted to make sure she was going to continue to gain weight and keep on eating. Crystina did well, and we brought her home on DEC. 28. When she came home we were very excited and relieved to have her home.
We took her to the doctor at 2 weeks for a heart echo. It came back normal, but she still had the hole. He wasn't worried about that and he said it would close soon. He said he wanted to see her again in a year. I told him that was too long and he said ok then in 6 months. Little did I know, that is what saved her life.
Well, her growing was normal until she was 4 months old. She was sleeping more. She didn't want any play time. She was turning blue; her head just stayed on one side. She never had any feeding problems. She was always a good eater. I would take her to the doctor a lot, because she would turn blue. The doctor put her on a heart monitor and did all kinds of X-Rays and labs. Everything came back normal. They never once told me to take her to Cardio. They would ask when her next appointment was. When, I told them in late June they would say that is fine.
I would always ask them if I need to take her sooner and they would always say no. Well, everything just kept getting worse. Finally, it came the day to see the doctor. When the doctor came in, he listened to her and his mouth dropped. The look he gave me I will never forget. He said to me calmly to come with him -- that she needed an echo. They did the echo and when he was done I had to go out and wait. When he came in the room he had tears in his eyes and told me she needed surgery right away. He explained the heart cath and what he would be doing. They had to open up her left and right pulmonary arteries. At the time, I wasn't nervous because I knew she needed it. I knew without it she was going to die, and that scared me.
Waiting for the surgery date was the worst. I was always watching her every move and I had a hard time sleeping. It helped that she had a heart monitor on. Finally, the day came. On July 10, 2000, we took her to All Children's Hospital. We got to meet the doctor whose hands I was putting my daughter's life in. It wasn't like me to just trust anyone. But we were in need fast. We didn't know it, but we were sitting on a ticking time bomb.
Dr. Giroud met with us and explained the surgery. When he got done, he asked if any doctor had told us about Williams Syndrome. We both said no. He told us he would tell us more about it when he sees her insides. He told us the surgery would last about 3 hours and we could go home the next day. That never happened. I had a sick feeling in my stomach. I know deep down that something else was wrong. Boy was I right.
The doctor told us he tried to open the arteries with the cath, but they would not open and stay open. He did open most of her arteries in her lungs so she can breath. He showed us the hole in her heart. He said if she didn't have that hole that she would have died already. The hole was letting some of the pressure off the heart. So the hole she had when she was born that was suppose to close in a couple of months is what was saving her life. We agreed to have the open heart surgery. They took her out of the Cath Lab 3 hours after we left the room. She was in very serious condition and was sent to ICU. They kept her in a coma so her body could heal some.
She developed a blood clot in her leg as well, because she was in surgery so long. When the doctors got done talking to us and we left the room, I couldn't stand up. My stomach was hurting so bad I was crying nonstop. I started throwing up. I was begging the Lord to take me and not my baby. I was begging him to let her live. I was beating myself up, because I felt like if I would have taken her sooner to the Cardio that this would not be happening to her. I was telling myself that I would never trust another doctor again. I would always go with my gut and what it is saying to me.
I did a lot of begging and crying to the Lord. My husband was going through the same thing. My husband called his dad from NY to come and be with him. His dad came that night. His dad hadn't even met Nina yet. We couldn't hold her when she was in ICU. She had tubes everywhere. She was so swollen and purple looking. It broke my heart looking at her like that. All we could do was hold her hand and talk to her. It took us three days before we could hold her. We stayed by her side the whole time. We weren't allowed to sleep in there. So when one of us got tired, we would go out and get some sleep. The other one would stay there. My son was in South Carolina with my mom. I got so sick and my husband and dad had to go get him for me. When my son got back, I got better. I had to get better for him. I had a reason to live in front of me.
Before he came back, I wanted to die if my baby was going to die. She showed us just what kind of fighter she was. She woke up smiling. We had her laughing. She was so happy for a little while. The day came for open heart surgery. They had to reconstruct her left and right pulmonary arteries. That day was July 19,2000. We were all there when she went back. My son was hugging and kissing Nina. Nina was smiling at him. I held her last. They had to pull her out of my arms. She started crying. It broke my heart again. I had to lay on the floor.
The hospital people had me moved to the waiting room. The whole time I was there I was crying and shaking. I laid with my husband and son. We prayed a lot. It took 4 hours before the doctor came out smiling. He told us everything went great and Crystina has all new arteries. She did very well. We were extremely happy, but she wasn't out of the woods yet. The first 48 hours are the worst. If everything goes good after that then she is doing good. I wasn't prepared to see her how she was. She was swollen again and had tubes in every part of her body. You could hold her hand or touch her anywhere. We could only kiss her on her head. I tell you what, I was really hurt when I saw that. It was like your worst nightmare come true.
When we thought we had heard every kind of bad news we got hit again. They came and told us on July 20,2000 that she had Williams Syndrome. When they told us that, they started naming everything that could go wrong with her. We really hit rock bottom with that. We had so much to worry about. Nina was so sick and lifeless at this point. But everyday got better. Everyday they were taking things out and they were waking her up. On the fourth day we got to hold her.
She was moved out of ICU. We could sleep with her. She did great. We left a week after open heart surgery. She had so much more life when she came home. Everything was great until Sept. of 2000. She got a really bad cold. Before this, she had never had any kind of sickness. She was so sick they had her on breathing treatments, steroids and a ton more med's. She finally got better, but the nightmares with colds were just starting.
On October 11,2000 we went back to All Children's for another heart Cath. This time the doctor was opening more arteries with the balloon. He open all the ones in her lungs. She did great and we were home in three days. Everything again was great until Dec. 22,2000 -- her birthday. She got sick. I took her to the doctor. They said she had a cold. On Christmas night, I took her to the hospital where they said she had a cold and a little bit of pneumonia. They gave her lots of med's.
Two days later, I had to call 911 because she stopped breathing. I was giving her CPR when help got there. They rushed her to the hospital. We finally found out she had RSV. They put her on a breathing machine, and tons of med's. I had a nervous breakdown. I had to go home because I thought she wasn't going to make it and I couldn't watch it. My husband stayed there with her. I went home with my son, who was sick as well.
I took care of him and I didn't go see Nina for 3 days. She came home and all better on January 3,2001. When she came home, she got sick every three months with a severe cold. When she got sick, I took her to the hospital right away and they kept her. This was every time. She would stay anywhere from 3 to 7 days at a time. This went on until she was 4 years old.
The last time was when she got the Flu that was killing a lot of kids. She caught it. She was in the hospital for 10 days. She was really sick. That was in 2004.
She has a tube in her left ear. Her right ear is great, but before the tube was put in, she was deaf in her left ear. We went though ear infections so bad that they would burst inside and drain out. She had the blood and puss everywhere. This went on for almost a year. When I finally said I'm not waiting anymore -- put the tubes in or I'm finding another doctor, he finally did it. When she had the surgery and woke up, the first thing she said was "mommy, I can hear". I started to cry, because I made her wait so long for it. She has not had any more problems with her ears, since that day.
Now, about her milestones. Well, she hit them all but very late. She started school and therapies at 20 months old. She went to UCP. They are great. When Nina started there, she could only walk and barely at that cause she just started walking. She couldn't chew her food or talk. She was still sucking a bottle. Nina was like a one year old and younger than that on some things. But they did miracles over there with Nina. They taught her everything.
She was crawling at like 15 months and sitting up around 12 months. She said her first word around 19 months. She was making small talk around 3 years old and talking fully around 5 years old. She was potty trained in day time at 4 years old and at night at 5 years old. She is still taking OT speech and is in ESE classes. She can do everything that a 1st grader can do except read small words and write.
Crystina has come a long way. She has done this all, even with her being sick and in the hospital all her life. I'm telling you I was on one hell of a ride with her. I stayed with her almost every step of the way, except when I would just break down and my husband would have to step in. I couldn't hold a job, because when Nina was doing good, she would take a turn for the worse. I would have to quit and go be with her.
Last year reminded me of when she was 6 months old all over again. I went through hell again. In Nov., Nina was having high blood pressure. Her feet and hands were turning blue and getting numb. I took her to a specialist and he gave her an MRI and a sonogram of her kidneys. He told us one was bigger than the other and her MRI showed hardly any blood going to the kidneys. He put her on meds and said there was nothing else they could do for her but watch her and start dialyses when she needed it, but this was it for her. I took her to 2 more doctors and they both said the same thing.
My friend, who is Nina's pediatrician and I found a Dr. in Philly that only specialized in William Syndrome kids. We called her and told her our story and she agreed to see us and take care of Crystina. We also found out that her husband is a children's Renal doctor. So he really wanted to see Nina and help her. Every doctor here in Florida gave up on Nina, and didn't want her to live, so I took her somewhere else. When we got there, before he saw her, he ordered a sonogram of her kidneys and a cath of her stomach. The sonogram came out normal -- her kidneys were the same size and functioning fine. Her cath was different. Her aorta is extremely small, but good blood supply is coming through.
They did open an artery in her bowel that was closed. The arteries that go to her legs and arms are also extremely small and narrow. So then the doctor saw us. He told us that the reason she had the high blood pressure is because her aorta is small and the heart pumps hard to get the blood down there. He said if the blood pressure meds would have worked, she wouldn't be here now; the lower part of her body would have no blood. So this was Gods work again. He also told us about a surgery she can have to replace her aorta when she needs it. The surgery is very risky, but there is hope there, where as here in Florida, there was no hope for her.
About her arms and legs -- right now there is nothing for it. The worst case is she might lose them, but hopefully before that happens, there will be some help for that as well. We are going there the end of June to get everything checked again. She is also seeing a heart and eye doctor there as well. She will finally get her eyes fixed this time. We can't wait to see her without her tears.
So when we came back to Florida from our first trip, Nina was doing great until she got a really bad kidney infection. She was passing kidney stones and she was acting like nothing. She was running a fever of 106, and peeing very little. They had to keep her because of her known problems. They did find out she was passing the stones. She was there for like 5 days and came home fine.
Do you know she never cried from the pain of the stones? She is a very strong little girl. Since then, she has been sick free. I think it is because she has already caught everything. We have had a good year so far. Thank the Lord. Nina has finally been healthy.
About Nina's personality -- she is very outgoing, she knows no stranger. This is very hard on us because she goes up to everybody and talks to them. We can never take our eye off Nina or she will be gone. She loves to ask the same question over and over. I think sometimes she does it just to bother me. She loves to dress herself, but she can't button her clothes or tie her shoes. She always put them on the wrong foot anyway.
She can feed herself, but she makes a big mess. We have her clean it up and she does it good. Crystina has a very strong will to live. She never gives up no matter how hard the task is. She tries a million times before she asks for a break. She hates loud noises no matter what it is. She shakes and plugs her ears and goes running to get inside. She hardly ever worries about what is going on. She always tells me everything will be all right mom. She tells me not to worry.
I want to thank everyone for reading my daughter's story. I know it was very long. I was brief with this because I could tell you a lot about the times I was in the hospital with her. We have been through a lot, but the Lord has never left our side. My hope for everyone who reads this will see the Lord is real; all you have to do is believe.
My baby is a walking miracle of his work; there is no other explanation of what has happened to her . Again thank you, I will keep an update as we get them. Everyone take care and God Bless. Please fell free to contact me if you would like to talk.
e-mail: BIGCOUNTRY1299@aol.com