Last year, I wrote this post for Premature Awareness Month Bloggers Unite event on November 17, 2009. In the last year, we've been busy. We successfully made it through RSV, cold and flu season without any major illnesses. In February 2010, I found out that I was pregnant...again, due September 8, 2010. This pregnancy was a rough one. I had major morning sickness, achiness, Braxton Hicks since week 13...I was just miserable the entire time! In April 2010, Rylee started seeing a GI doctor and nutritionist monthly. We have tried many different diets and medications. So far, since February Rylee has gained 1 lb. In the end of July, Rylee started vomiting again. Her GI doctor and nutritionist decided that it would be best to have her head measured. I rushed her to the local clinic at closing time, had her head measured and sent off to the Children's Hospital in Madison. By 9 am the following morning, they had reviewed it and called. They wanted her there right away to have a brain scan done. The scan showed that her shunt had indeed quit working. She was scheduled for the surgery the following morning, July 30th. It went well and we were able to come home the 31st. On August 2nd, I went to work like any other Monday morning. I had contractions all day but chalked it up to those Braxton Hicks. I had a regular 34 week OB appointment at 3:30 pm. I got in the car and started to the clinic, which takes 35 minutes to get there, when those contractions started to hurt a little. I told the nurse when I got there and got this look like "you are not in labor!" I was doing a doctor rotation so a new doctor whom I had never seen before came in with her head in my file. She looked at me and said "oh my gosh, ok...how long have you been shaking?" She called an ambulance to take me to the hospital since I was no longer in any shape to drive and I was 3 cm and 90%. Those EMTs, both men, wheeled me out of the clinic on a stretcher through the OB waiting room. I probably scared the daylights out of those waiting expectant moms. I was 5 cm and completely effaced when I got to the hospital. Weston Robert was born 5 weeks, 3 days early. He started grunting with each breath and had some trouble catching on to eating. He spent 19 days in the NICU. 5 days after bringing Weston home, I noticed that an incision from Rylee's July surgery was broke open and there was a black something inside of it. The next day, I took her to see Dr. Alison who was extremely upset by this, got us an appointment at the children's hospital for the following morning and instructed us to go to the UW ER if if broke open again, bled or could see the black "thing". As of Monday, we found out that Rylee's shunt was exposed and she needed an entirely new shunt. Dr. Bragg (the new Neurosurgeon) tapped her shunt for infection and instructed us to be back in the morning for surgery. I was extremely nervous that morning. They took her back and it seemed like forever before we got an update. Dr. Bragg came in and said that she had just closed Rylee up and getting ready to clean her off, when the phone rang. It was the lab, saying that Rylee's culture from the shunt tapping the afternoon before had grown out for positive strep coag. So Dr. Bragg, went back into surgery to remove the shunt, place a PICC line, and place an EVD. Rylee was in the Pediatric ICU for 8 days before undergoing another surgery to put a new shunt in. Today, Rylee and Weston are healthy and happy. Weston has completely caught up with his age. Rylee is lagging about 12 months behind. They wear the same sized clothes and diapers. It's like having twins. The last 22 months have been hard. As a mother, my heart has broke many times watching my child go through test after test. Whenever I have a "down" day, I think about her toothy smile, infectious laugh and the mere fact, that truly against all odds, she is here with us. We don't know what her life expectancy is but she will have the best life we can give her.
Too many babies are born early. The cause of Rylee's prematurity is unknown. There are problems with her heart, lungs, kidneys, intestines, brain, feet, hands...could these have been prevented if she was a full term baby? We'll never know. Give a baby a chance, donate to the March of Dimes. Do it for Rylee!
I made a quick little video of Rylee's last 22 months. Enjoy!
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Thank you for sharing. You children are beautiful miracles and you are a strong amazing woman
ReplyDeleteThank you for sharing your story and being part of the Fight for Preemies. You and your family have been through so much. Your post will help other people know that there is light at the end of the tunnel.
ReplyDeleteYou are so strong. The fights our preemies face is a long one. My twins are celebrating their 19th birthday today. They struggled long and hard like your little one, but have come through happy and healthy. Take care of yourself so you can take care of your babies. That was a hard, but important lesson I learned along the way. Ask for help when you need it, too. Best wishes to you and your family.
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