Rylee Diane Webb
No baby should be born this small. Prematurity flat out stinks. I mean, the fact that our kids' lives are forever affected (some more than others) by the conditions surrounding their birth just stinks. Well, they don't really get too much into the whyquestions (which are healthy to ask but often unanswerable), but the March of Dimes is making great strides in answering the how questions. How do we predict premature birth? How do we prevent premature birth? How do we help these tiny babies survive their traumatic entry into the world? How do we save their lives? How do we help them thrive? How do genes and their protein signals guide the formation of the brain, limbs, spinal cord, axial skeleton, and other organs during embryonic and fetal development? But that's the kind of research that eventually leads to life-saving treatment for these tiniest of patients.
We are very thankful for all the support we have received during these past 15 months. We have already received several donations for our March of Dimes Team and I am amazed at the thoughtfulness of everyone that has donated already. To this day we still don't know why I went into labor so early besides that fact that I was carrying twins. We are very excited to walk with our girls on 5/1/10 and hopefully both girls will be taking steps by then. I will post more on the March of Dimes each week. If you would like to walk with us or order a t-shirt please let us know. We have had a pretty rough weekend with the girls. Dang allergies!! We didn't get much sleep last night as they were both up and down and not feeling very well. They both had a low grade fever but it only last a few hours. I was thinking that Jordan might have had another ear infection but she has been fever free all day so I think she is just having trouble breathing. They received their last synagis (RSV) vaccine this week. Tiny K was here on Wednesday and we were once again reminded on how awesome our girls are doing. It is always nice to hear the girls are doing so good.
In Daddy's words:
On December 20th, 2008, my wife, Kari, and I were blessed with two little miracles. Our baby girls, Jordan and Rylee, were born 15 weeks early. They were 13 inches long and weighed 1 pound 12 ounces. At the time, we were told that they had about a 70% chance of survival. The girls thrived in the St. Luke’s Hospital NICU for about ten days. Everything was going as planned and the doctors were amazed at how well they were doing. The next couple of weeks were the hardest days of our lives. Jordan had to have a heart surgery. “Nothing major,” according to her doctors, but still heart surgery to us. A couple of days later, we were informed that Rylee had contracted a virus that was causing a lot of complications. We were told later that day that she would probably not make it through the night. Thanks to the prayers and faith of our friends and family, she made it. We came to find out there would be many ups and downs throughout our stay in the NICU.
After 96 days, we were able to bring Jordan home. Rylee was transferred to Children’s Mercy Hospital and would not get to come home for another 42 days. Rylee’s airway has never opened as much as it should, so she has a tracheostomy tube that she breathes through. She will have surgery on May 19th to try and correct this and get rid of her breathing tube. We have very high hopes for the success of this surgery.
Both girls have thrived since coming home. They have managed to avoid any major sickness and continue to amaze us with their progress.
On May 1st, the March of Dimes will have a March for Babies fundraiser walk in KC. Kari and I will be walking with our girls in an effort to give back to an organization that gives so much to so many. Their presence was felt every day at the NICU. They would host activities for parents, provide snacks, provide counseling, and anything else that you would need. Probably the most important thing was just the fact that they were there to talk to us. The representatives were all people that had gone through the same thing that we were experiencing. We owe a lot of our sanity to these people.
We are sending this out in hopes of raising money for this organization. If you would like to walk with us, order a t-shirt, or just make a donation we would greatly appreciate it. Any donation of $15 or more will get you a t-shirt if you want one. We just need to know what size you would need. You may contact me with any questions that you have (firstname.lastname@example.org). You can also check out our link for the fundraiser.
or you can find the March of Dimes link in the upper right corner of this screen.
Thank you for your time and consideration.