Sunday, March 28, 2010

Itty Bitty Webb's are Marching for Babies

Daddy's ring

Rylee Diane Webb

Jordan Grace 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 ( 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.
Troy, Kari, Jordan, and Rylee Webb

Saturday, March 27, 2010

Friday, March 26, 2010

Jordan's welcome home day

Little Miss Rylee one year ago today.

Maddie is so happy that we finally got to bring one of the babies home.

I am going home. Breaking out of the NICU.

One year ago today we brought Jordan Grace Webb home after spending 96 days in the hospital. We are amazed with how well she has thrived since coming home. She continues to amaze us everyday with her progress. We had to wait 42 more days to bring home our sweet little Rylee. It did give us a little time to get used to caring for a baby with oxygen and an apnea monitor. Before we left the St. Lukes that day with Jordan we went over to Children's Mercy and Rylee was removed from the ventilator that day and I posted a picture of her looking cute as ever following her extubation. We have seen so many changes wit

Sunday, March 21, 2010

Here are the photos that we had taken last week

This is going to be short. Jordan is officially walking. She doesn't get up on her own yet, but if she is standing on something she will take off walking. She can get across the room, but most of the time it is just 7 to 10 steps. We have Tiny K here on Wednesday and the girls should get their last Synagis sometime this week. We are so glad we had these pictures taken. Have a great week and hope you enjoy the pictures as much as we have.

Thursday, March 18, 2010

Jordan's first bottle one year ago today

This is Jordan tonight holding her bottle during the entire feeding for
first time. It only took a year!

This is Jordan one year ago today.

She has the exact purple outfit in the post below but this is a
newborn size and the one below is a size 12 month.

One year ago today Jordan finally got her first bottle. It took some work for her to get to this point but as soon as we put the bottle in her mouth she sucked it down like nothing. This was even with thickner added to it. We were so proud of our little girl on that day. I know several of the NICU staff was just as impressed as it is usually a struggle to get micro preemies to drink from a bottle.

This is the post from one year ago today about Rylee:

Rylee's x-rays have shown that she has a few broken ribs...prob
ably from chest compressions. They are worried about her having brittle bones. They are going to add some calcium and phosphorus to her feedings to try and help her with this. Her lungs still have some dark areas that concern them. They think with good nutrition and time these will heal. How much time is the question. They are not going to start the roids until she is ready to come off of the ventilator which may not be for a couple of weeks depending on when her lungs clear up. It doesn't sound like she is anywhere near coming home.

We will be going over to Jordan to do the swallow study. Hopefully we get some good news over there to balance out the not so good news from here.

Sunday, March 14, 2010

Almost 15 Months already

Rylee and her best friend Maddie.

This is Rylee's new sleep position. Not a good thing with a trach.

Jordan loves to steal Rylee's pacifier! Well, it did used to be her

Rylee's new swim hat.

Standing and taking a few steps still.

Rylee is in the time out basket.

I know it is a bit bleary. I haven't figured out my dang camera. I just loved her face on this picture.

We went for a walk last Sunday and enjoyed every second of it. I can't wait for the nice weather to get here.

Thanks to Darla Peters Photography we were able to get the girls' pictures taken today in our home. I can't wait to see them and the girls did very good. Rylee was the ham today and gave up alot of cute smiles. Jordan wasn't real thrilled with getting her picture taken, but we were able to get some really good ones of her. I forgot about the time change when I scheduled the time so they had to take an earlier nap and it didn't last too long so they were both pretty tired. Not alot going on this week with the girls. We had our speech therapist through Tiny K here on Wednesday and she video taped the girls eating. Rylee put on quite the show! The girls are both eating really good lately. Jordan hasn't taken much from her sippy cup, but every now and then she will take some good drinks. That is pretty much how Rylee is with her bottle as well. Rylee is now on all pediasure and seems to be tolerating it well. We will leave Jordan on her high calorie preemie formula until she is one year adjusted and then we will probably just add carnation instant breakfast to her milk. I can't wait to get rid of the formula that is for sure.