Community. Writing for Rylie's Heart.
Four months ago, I hadn't heard of congenital heart defects. Now, I find myself saying things like the "CHD community" or my "CHD friends."
"Heart Moms and Dads" as we call them in the CHD community, often rally together to offer support and hope. I've been so accepted and have gotten such love and support from the community, it's time to give back.
Being part of the Congenital Heart Disease community means reading about people you consider your friends watching their children go through emotional and physical hell.
Cora was never sick or in the hospital, so I don't know what it's like to have a child sick in the hospital. I can only imagine.
I don't remember how I first learned about little Rylie. But, I remember getting an email from her mom and emailing back and forth over several days. I set up a blog for Rylie to get the word out.
Rylie Crenshaw celebrated her first Easter in the hospital.
Rylie reminds me much of Cora. The look similar in pictures sometimes. And, their stories are also similar, both sent home from the hospital and both rushed back to the ER.
Rylie's outcome was different, but I am determined to keep working to make sure it stays that way. Her family faces a long road. At one point, a transplant was in the works, but Rylie's antibodies are too high.
And, all the while, the family is stuck in the hospital with high parking fees and time off work. Caring for someone in the hospital is expensive. I can't imagine the costs of caring for a sick child. The family is split up with mom at the hospital and dad two hours away working.
Rylie has grabbed my heart. I'm touched by every story I read, but feel like Rylie needs me and Cora right now. If you can help, please do so.
Rylie's mom sent me an email with the entire saga:
"Rylie is a ten week old little princess that was born on Jan 20th 2010 to Dina and Daniel Crenshaw. She weighed 6 lbs 7oz. at birth and was 19 inches long . After being in the hosptial 3 days she was sent home.
Her parents were told that their little girl was a health normal baby, Rylie went to her one week check up and again was sent home with a clean bill of health. Then on day eight, later in the evening, rylies mom noticed that her baby was acting different than normal. At 6 pm on that day mom feed the baby and set her up on the couch between her and her mother they talked for a while and around 7 pm Rylie throw up because this wasnt uncomman for Rylie, mom just cleaned her up and put her to sleep at 9, baby woke up fussy but would not eat. Mom told dad and they were decided that if she didn't eat by 12 they would call the doctor.12 clock came and baby woke up fussy but still wouldn't eat mom asked dad to call the doctor. The on call doctor called back and ask what the matter was dad told him all of rylie's symptoms 1) Rylie was fussy 2) Rylie would not eat 3) Rylie was cold the doctor said that she should be fine that no baby would starve it self.
If we wanted to we could bring her in at 8 am that day. Mom and dad felt a little better but could not sleep. By 4 am Rylie still had not eaten mom then began to worry a little more so they called the doctors office again the on call doctor called back and said that yes it was unnormal for a baby her age not to eat that we could take her to the office in the morning or go ahead and take her to the ER but he said that she should be fine until the morning. Because mom is a worry wort she packed up the baby and her two year old son and said lets go.
They got to the er at 4:45 am and checked Rylie in. It took only a few minutes to be taken back to the exam room when we got back there they asked us what was going on we explained to one nurse what had taken course that day, while about two to three nurses worked on Rylie, it wasn't until they kept running back an forth then the attending came in and asked what was going on it was about 5 am and they still had no vitals on Rylie. At that time the attending was on the phone with the main hospital trying to get a neonatiologes to the er. He went round and round with the main hospital until he got his number. He then paged him in about 2 minutes he was on the phone with the attending doctor at the er. He said that he would be on his way it took him about 5 minutes to get to the er office.
At the same time that all this was happening the nurses had called in the ems guys to help they were working really hard on Rylie they were trying very hard to get an iv started and couldn't they even tried to get an iv in her leg bones. the whole time her parents watched in fear that they might lose there little girl the team at the er moved her from the room she was in to a trauma room they still had no vitals. they got xrays of her chest and her abdomen to see what was going on.
After that the neonatolgist came in to the er he took over with in seconds he had an iv on Rylie and was giving her iv fluids. He looked at her xrays and said something to the nurses and then they started her on pgn and got her on a vent.
He listened to her heart and looked at us and said that what his findings were, he told us that he thought that it could be one of three things it could be her heart or her liver or metabolic problems. He told us that he was pretty sure that it was her heart. we sat there in shock what were we going to do. Then in about five minutes he came back and told us that we had three more choices as to were we could go: the first was Scott and White in Temple the second was Austin and the third was Texas Childrens in Houston. Since we already new about tch we decided to go there with miss Rylie.
He called tch and told them that he had a baby that need to be transported to their hopsital and asked them to come and get her because it was such a long drive to get there they talked about flying to get her they debated as to whether or not to come but because the weather was bad they decied to drive.
The wait seemed to take forever for them to get to us we just sat there in shock how could this happen why did no body catch that there was something wrong with our little girl. My mother showed up sometime during the whole thing and just sat there and waited with us I sent my husband home to get the basics enough for a short stay at Houston. It took them two hours before they got to us when they did it was very crazy in Rylie's room they were trying to get her ready for transport on there machinesand get a report as to what was going on.
This is what they were told: baby 9 days old brought in because she was cold, fussy and would not eat, took 30 minutes to get vitals heart rate was low when brought in her temp was 92.3 and dropping got an iv started put her on a vent to help her breath and started her on pgn placed on a hearter blanket her temp was now 100.1. the kangroo krew asked us who was going to ride with rylie and I said it would be me they loaded Rylie in the box.
We woke mason up and told him bye and that he was going to stay at grammys house for now at the same time they were loading Rylie up in the abulance and I was getting in the front. My mom took mason to her car and called me to see how I was I told her I was fine and that I would call her when we got there. My husband in the truck and followed.
It took two hours to get to Houston it was 12 pm when we got there in the nicu at tch when we arived there there was several doctors waiting to see Rylie they did an echo on her heart.
Then they told us what was wrong with our little girl they told us that she had hypoplastic left heart sysdrome at first we were in disbelief that our little girl was sick and dying they told us that had we had waited she would be dead. then they told us that we had three choices to choose from, the first was do a transplant but if we decided to do that the chances of find a heart for her would be hard, the second was do three set of surgeries the norwood, the glen, and then the fontan or last we could do nothing. Of couse because we are a proactive parents we decided to do the surgeries.
A few days had to pass before they could do those surgerys they explained that the process of doing this would be long and hard journey the first surgery would be done as soon as they had a spot.
Then that day came when rylie was exactly two weeks old they said it was time to preform the norwood. they told us the day before that she would get and mri at 6 am the morning of and then they would take her to cvicu and wait until 8 am to take her back. so my husband and I decided that we would be back in the morring at 4 am to see her that was the first time I got to hold her since jan 29th.. it was feb 2nd and I was scared that I would never be able to hold her again that this could be my last time then it was time for her to go back my whole family was there with us as we waited we got an update every hour it took a total of 6 hours for them to do her surgery when we were told that they were done and to just sit there and wait for the surgen that seemed to take the longest... it only took 30 minutes when he came in he was happy with the way that Rylie surgery had turned out. He told us that we could see her two at a time in an hour. We were relieved that she had done great but her real journey had just began.
She was in the hospital for two weeks after surgery she had made a remarkable recovery they were surprised on how well she had done considering that her body was in shut down when they got her. hey sent her to stay at the Ronald McDonald House of Houston to wait for her next surgery it was Feb 17th when I got to take her home well to the rmh we were so happy that she had been released, we thought that we were out of the woods then on the 19th rylie started to act up she throw up twice with in two hours time so I called the hospital they told me to bring her in so we did it was two days at the hospital then they sent us home on the following monday we went to her first clincal vist and they said that she was good but they want to see her in a week. a week passed and we went to her next clinical visit at that moment they were like based on her xray and echo they believe that she need to come back in to the hospital. They admited her into the nicu and started her on milrion and iv lasiks and heptrin they did a heart cath on her within a week that heart cath showed that other than low pressure in the heart there was no reason as to why she was acting this way they then told us that we might need to look at transplant as an option so we decied to meet with the transplant team. They talked to us and told us the pro and cons of transplant. We decided right then and there that if that was the last option that we would do it because at the time we were told do transplant or do nothing.
On Friday the 19th of
that is about where we are now..."
As of now, the transplant has been called off because of the high antibodies. Rylie's mom isn't sure what's going to happen next.
There are many Rylie's out there. Many Cora's. Congenital heart disease unfortunately, is not rare, and parents like Rylie's parents need our help. Rylie might spend months at the Texas Children's Hospitals, hours from her home town. Imagine the expense.
How can you help?
Rylie has an online fundraiser set up here: http://www.easy-fundraising-ideas.com/donate/Rylies-Heart--fundraiser/?gid=135 You can even donate in Cora's Memory.
You can offer support by sending a free e-card to Rylie Crenshaw here: http://www.texaschildrens.org/parents/patientgreeting/default.aspx
You can spare some change, right? The Crenshaw's have a fundraiser going on from Mother's Day to Father's Day. Save your spare change in a baby bottle and mail it to:
Ronald McDonald House Houston
Rylie Crenshaw
1907 Holcombe Blvd
Houston, TX 77030-4123
I'm going to save my spare change and cash it in and mail since I live all the way in Indiana.
You can reach out to the family and offer prayers, support, and ideas:
Riley is on Facebook.
Follow Riley on Twitter, @Ryliesheart
Or visit their blog, http://ryliesheart.blogspot.com
You can read about the signs and symptoms of congenital heart defects and be able to spot them in your child or others.
You can make sure your baby gets a pulse oximetry at between 24 to 48 hours of age.
Rylie is one in about one hundred babies born with congenital heart disease.
I hope your child isn't one of them, but if it turns out he or she is, there's an entire community of caring people waiting to help and welcome you.
Share
