Sunday, April 25, 2010

Oh Rylee what now

Jordan loves to go outside when we take Maddie out.

Rylee is not sure about heading outside yet.

Rylee standing!! Yea!
Rylee smacking her lips after she applies her lipstick.

Ry and her best friends monkey and lamby.

Rylee and her skinny legs. These shorts are size 6 months!

The only way I could get them to eat this morning.

We spend alot of time on the ledge.

Jordan sleeping. I know alot of sleeping pics. It is getting harder and
harder to get pictures of them as they are on the move non stop.

They loved to look out the window and watch daddy mow. Jordan
waved and said hi the entire time.

This is how I found Ry the other day. So cute.

Jordan's bed head.
Smiley Rylee and her snotty nose.

It is a good thing she has a monitor on or she would not be sleeping like

We took Rylee for her pre-op appointment on Wednesday and they were not comfortable with her having her scheduled bronch on Thursday. I told them about her recent symptoms and that she was needing oxygen at night so this concerned them a little bit. The doctor heard some wheezing in her lungs so we decided to be safe and schedule it later in the month. I was very disappointed after hearing this as this bronch was going to show us exactly what type of surgery she would have in May and also make sure she was ready for it. We were not able to get the bronch re-scheduled until 5/14/10. Her reconstructive surgery is still scheduled on 5/19/10 so hopefully we find out good news on the 14th. After this appointment nurse T and I took Rylee down and fed her some lunch and tried to forget about the news we received. We went up for her special care appointment and I quickly quit feeling sorry for myself after seeing all the babies hooked up to ventilators. This reminds me that we are very blessed that Rylee only needs a trach and g-tube and will eventually not need either of these. It is very sad seeing those poor little kids hooked up to all the equipment and I don't see how those mothers can care for them all by themselves. Rylee was weighed and gained two ounces so she is up to 19 lb 2 oz. She hasn't had much of a weight gain since our last visit there but they are not too worried as she had been sick. We all agreed that Rylee is probably just dealing with allergies or the medical term for children "reactive airway" and just needs some time to get her lungs stronger to handle it. We have had a great weekend with the girls. They are a blast to be around and we have so much fun watching them learn new things. Rylee is just about walking now. She can take a couple steps and is standing alone for a little longer then she was. We had Tiny K here on Tuesday and she signed "more" several times while we were rolling a ball back and forth with her. I was so proud of her after she did this and we were all filled with excitement for her. I even had a few tears after seeing her do this and get so excited. She hasn't done it much since then but we are still working on it. Jordan has really progressed with her speech and is saying more and more everyday. You can't really understand what she is saying but she repeats a few things after we say them. She is practically running now and is keeping us very busy. The girls are now fighting with each other and that brings on some drama. Rylee likes to pull Jordan's hair and Jordan likes to head butt Rylee over. They have even wrestled a little bit if one of them is in their way. I think we are in some trouble! We don't have anything scheduled this week other then our March of Dimes walk on Saturday. I am so excited to participate in this walk and we are looking forward to seeing everyone. We are still taking donations if you want to still donate. The site is in the upper right hand corner if you are interested in donating to the March of Dimes. We still need everyone that is walking with us to sign up as walkers so if you haven't done this please try within the next day or two. When we walk on Saturday, I will be thinking of how blessed we are to have our girls and to know that if it wasn't for all the medical research our girls would not be here with us. I know it will be emotional and I will be thinking of how lucky we are every minute and I also will cherish the fact that I have a stroller full of two survivors to walk with me.

Sunday, April 18, 2010

19 pounders

Jordan one year ago.

Rylee went from this to the picture below in a matter of hours. So sad.

My future is too bright!

Get out of there Rylee.

Jordan isn't too big yet either.

We have a couple of 19 pounders as of Thursday. We took them for their check up with their pediatrician. They were both a little over 29 inches long. On the 25 week adjusted scale Jordan is in the 17 % for weight, 64 % in height, and 31% for her head circumference. Rylee is in the 17 % for weight, 55 % for height, and 76 % for head circumference. On the regular scale both girls are in the 3 % for weight. They are the scale and that is all that matters. Jordan only gained 15 ounces during the last three months but the doctor didn't seem too concerned as she is growing length wise very well. Rylee gained a pound and a half during the last three months so she is doing fine as well. The girls had to get two of their 15 month vaccinations and will get another one in three months. The doctor let me know again that they look so much better than when we first brought them in to see him. He did let me know that he has hospitalized several kids recently with respiratory issues and a few with RSV. I recently read about two kids ages 4 and 5 that came close to dying because of RSV. They were micro preemies like the girls so this has me so worried. I can't wait for the day that I don't have to worry if the girls are going to get sick. I did take Jordan to a wedding shower on Saturday and I was so shocked at how well she did. She wasn't too shy and even showed off her walking skills. She tried stealing one of my aunt's cake so I let her have a few bites of mine and she loved it. I was really sad that I couldn't take Rylee and hated leaving her at home. She had a good day with daddy and took a three hour nap while we were gone. I don't think she knew what to do with it being so quiet in the house. We have to take Rylee in on Wednesday for a special care appointment and then she has to see anesthesia as well. On Thursday she is having another bronchoscopy to get more of an idea of what kind of reconstructive surgery she is going to have done in May. We have Tiny K here on Tuesday so it is going to be a busy week. As of Friday, Rylee has had her trach in for exactly one year. We are so ready for her to get it removed as it is becoming harder and harder having her have to rely on this to breathe. We are still raising money for the March of Dimes and I am so pleased with how much money we have raised. We have not been able to get our shirts ordered as the company that is making them has been out of the shop. I am pretty sure we can still get them ordered this week in time for our big walk on 5/1/10.

Sunday, April 11, 2010

Yummy BBQ time

My sleeping beauty. I think we are getting our money out of this swing.

One year ago yesterday after her g-tube surgery. So scary to us.

That is our little Monkey climbing things.

Boy are we in trouble!!

This is Rylee after her cup feeding. A huge mess!

Too busy to look at the camera.

Troy was in a BBQ contest in Osage City this weekend so I loaded up the girls all by myself and took them to go see their daddy in action. It is about a 50 minute drive and the girls were great the whole way there. I only had to stop once to suction Rylee so that was nice. I put her on her sat monitor and kept a close eye on her in case she pulled her trach out or needed suctioned. We probably really are not supposed to travel without two people in the vehicle but I needed to get the girls out of the house to enjoy the beautiful day. It felt really weird loading them up and traveling with them alone as we have not been able to do this until now. It was alot of work getting them there and home but so worth it. Troy got home around 6:00 last night and went straight to bed so he could get up and do his Rylee duty as we didn't have a nurse. Rylee slept really good and didn't need much attention at all through the night. Troy and I took Rylee to CMH on Friday for her swallow study and we didn't get the results we wanted. Rylee is aspirating on her liquids and now has to have any liquid thickened to honey consistency. It is almost like yogurt once you mix the liquid with the gel. She has to take it from a cup as it is too thick to go through a nipple. She participated very well and I was so proud of her. She was strapped down to a chair and several people were in the room watching her and we had to move quickly because of all the radiation. After her study we went up to the OT room and they worked with us on what to do with her. Her liquid also has to be chilled and she can't have any liquids warmed up as the cold will help her swallow better. The OT specialist was shocked that Rylee did so well with the cup and kept bragging on her. I was still in shock that she is doing worse with her liquids than she did during her last study. Hopefully once she gets her trach out we can try it again to see if she will do better. She can't even have ice cream unless it is thickened. Poor girl! We also have to drain and squeeze the fruit as it has too much liquid for her to handle. Jordan enjoyed the afternoon with Grandma Bitler and they had a great time together. She was a little sad when we left and kept going to the window looking for us. Jordan is now walking almost 100% of the time and it is so cute. We are still working on getting Rylee to stand unassisted and then I think she will take off in no time. We have pediatrician appointments on Thursday and the girls will get their 15 month vaccinations. I am hoping they both have good weight gains. I am a little worried as Rylee puked most of her feedings for several days and didn't eat much at all by mouth. We ended up just giving her pedialite all day on Tuesday and by Thursday she was back to full feedings and has done fine since then. She is still needing a whiff of 02 at night and seems to be getting back to herself. I posted a picture of Rylee after her g-tube surgery which was one year ago yesterday. She has come so far since that day.

Sunday, April 4, 2010

One year adjusted birthday and Happy Easter

This is poor little Rylee last year on Easter :(
She just had her G-tube surgery.

This was Jordan last year on Easter. The pic above is from today.

Rylee is being so sweet sharing her pacifier.

and then the mean sis took them both away

Jordan is very onery! She does this and then looks at us.

I found you Jordan.

I don't know about these skirts Mom.

Jordan climbed up the ledge. Boy are we in trouble.

She crawls around with toys in her mouth all the time. So funny.
Silly Smilee Rylee!

If I had delivered the girls on their scheduled due date they would be celebrating their one year birthday today. It is hard to believe that their birthday was on 12/20/09 and it really shows just how early they were. I ended up taking Jordan to the doctor on Monday morning as she had a rough night sleeping and was pulling her ears. I just took her during the morning sick hour and I will never do that again. There were alot of sick kids and we kept our distance and I didn't touch anything without a wipe in hand. She didn't have an ear infection and the PA said she just had a cold. He is the second person that has told me babies can't get allergies so she didn't have allergies. She had a runny nose and that is pretty much all she had. Poor little Rylee has had a rough week with her cold. She has had a few fevers and has puked up several of her feedings daily. She gets to gagging on her secretions and then that initiates the puke. We have done alot of laundry this weekend. It is so hard seeing her get this sick. She doesn't seem too bothered by it and is getting some extra cuddles when she wants them. We have been keeping in contact with her special care doctor and they started her on some antibiotics on Thursday so hopefully she will get better soon. We enjoyed our Easter with our little ladies. We took them to Burlington to my sister's house for Easter dinner. We bolted out the door when one of my nephews got sick. We are thinking he may have drank a 2 Liter or more of liquids so that could be the problem with him. It did make our dinner very interesting to say the least. I don't think I ate as much as I could have. Rylee has a swallow study at CMH on Friday to see if she is aspirating on any of her liquids or food. She hasn't eaten much during these past couple weeks so hopefully she plays nice and gives us some good results.

March of Dimes: This is our first year doing the walk so I really didn't know what we were supposed to be doing with the people that want to walk. I got this response back from the March of Dimes on if you would like to walk with us.


The best thing to do it to have them sign up and donate to themselves as a part of your team. The way that some of the fundraising works is that the Kansas City Chapter receives a percentage of March of Dimes funding for local programs based on the number of walkers in attendance at the KC walk as well as dollars raised. So ideally, they should sign up to walk with you and then make a donation to their walk and it would get tallied for your whole team. Even $25 is greatly appreciated to account for the overhead of each participant. Each walker should be registered on May 1st to participate.

If you have any questions please feel free to contact me. We will be ordering our shirts this week so if you would like us to order you one please let us know soon. Have a great week and enjoy a few weeks of pictures.