Sunday, April 24, 2011
Rylee was released from the hospital on Thursday morning and everything is going extremely well. We didn't get much sleep as the nurses were in our room every hour or so taking vitals, etc. I am not sure how anyone could get any sleep while staying in the hospital. Rylee did very well and just laid in her crib and hardly made a sound all night.We came home and took a long nap and then went to Burlington to pick up Jordan. Jordan had her first sleepover at my mom and dad's house and from what we heard they had a great time. Jordan hugged Rylee right when we walked in the door and then kept giving Troy and I hugs and kisses. We were really glad to get our family back together. We will go back to the ENT clinic in a couple weeks and then possibly go in for her "pretty surgery" sometime in a few weeks. We had a great Easter weekend with the girls and they have more candy than we know what to do with. I posted pictures of Jordan with the blue egg and can't believe this is their 3rd Easter. Rylee was still in the hospital during their first Easter. I put the girls in the same dress as they wore last Easter just for fun and it actually still fits them. It might be a little too short to wear out in public so we will pack it away. One week from today we will be walking in the March of Dimes walk and we are still taking donations if you would like to donate. The link is to the right of this page.
Wednesday, April 20, 2011
It was a long day but everything went well. We got to the hospital around 2:30. They decided to give Rylee some Versed before the surgery because she has struggled coming off of anesthesia in the past. She is a pretty funny girl when she is drugged up. They finally took her in around 4:45 or so. After about an hour the doctor told us that they decided to just cut out the scar tissue and let the holes close up on their own. She said that is the safest way to do it if it will heal on its own. Not as many things can go wrong. Ry finally got to eat around 7:30 (24 hours since she last ate). She was pounding down the Pringles, Nutter Butter cookies, strawberries, and grapes.
We will be breaking her out of the hospital tomorrow.
We will be breaking her out of the hospital tomorrow.
Sunday, April 17, 2011
Rylee will have her surgery at CMH on Wednesday. We will hopefully only have to stay the night one night and we will be sure to keep everyone updated as soon as we can. Please keep this little girl in your thoughts and prayers as any surgery on a medically fragile child is very scary. This will be hard on Jordan too as Jordan is Rylee's second mommy and she will not know how to act without her being here. Rylee is officially done with her pediasure and I took a picture of her last bottle. She is now drinking milk and probably needs a little more work in this area. She still has some junk in her lungs and I started giving her some mucinex to try and loosen it up. I don't want to have to postpone her surgery this week. We had our last visit with our caseworker that has been monitoring Rylee since she was in the hospital. It seems like we are really starting to just lead a normal life without all the preemie related issues.
Sunday, April 10, 2011
These are a few of the pictures we had taken last weekend. They turned out really good considering the weather conditions. We are still trying to raise money for our March of Dimes team. My cousin Misty Knight's 8th Grade class had a penny war this year and they raised $600 for our team. I was so honored that my cousin chose to give it to a great non profit organization. We will be walking on 5/1/11 and please feel free to let me know if you want to walk with us. My e-mail is firstname.lastname@example.org if you want to e-mail me. We had Tiny K here on Friday and no concerns with the girls. Our main focus is getting Rylee through her surgery and then we will talk more about getting Rylee off her gel thickner. I called our OT therapist at CMH and still waiting to hear back from her. Rylee has had some crud in her lungs since Thursday and we have been trying to get her to cough more. I am hoping this doesn't turn into anything too major. We had a great weekend with this wonderful weather and spent some time with friends on Saturday night. The girls had a great time.
Sunday, April 3, 2011
Tomorrow the girls will be officially two years old for their adjusted age. My due date was 4/4/09 and they were born on 12/20/08 so that is why we still follow their adjusted age too. My mom helped me on Friday with both girls so Jordan didn't have to stay home alone. We started the day off in the ENT clinic and were there for 1 1/2 hours and that was very entertaining. It is not easy containing the girls in doctor's offices and they were a handful. The doctor scoped Rylee's airway with a camera and we were able to confirm her right vocal cord is not moving at all and is paralyzed. This could have happened from all her intubations, from her trach, or from her reconstruction surgery. The doctor didn't seem to concerned and I wasn't too worried until I came home and researched it. There can be a lot of complications from having a paralyzed vocal cord and they major one is aspiration. Rylee is still on thickened liquids and I will need to get with OT to see what their thoughts are on getting her off the thickened liquids. Our plan was to stop thickening her drinks this spring once cold and flu season was over but not sure what we will do now. The research also showed that she could have trouble speaking in sentences as she will not be able to get enough air and could also have trouble getting air while running, etc. We already know that she has a really soft voice and that part doesn't bother me. After not hearing her voice for 1 1/2 years I will take anything. Her voice does sound really cute. I am not sure how she will feel about this when she gets older. Rylee is scheduled for surgery on 4/20 to help get her airway to close. The doctor reminded me that this is a very serious surgery and we are not to take it lightly. She will have to stay the night at least one night and maybe two nights. She will have to go back another date to get the trach scar taken care of. The doctor kept calling it a pretty surgery. After this appointment we went to lunch at Manny's and then went back for Rylee's Pre Op appointment. Once we arrived the receptionist told us that she wasn't scheduled and we would need to schedule another appointment. Needless to say I wasn't too happy so they got us in within an hour. My poor mom got the pleasure of holding Rylee while they took her vitals and she does not enjoy this by any means. My mom was pretty shocked that something this simple upset her so much. It just goes to show how much she hates being in doctor's offices and hospitals. We took the girls to Overland Park today to get their pictures taken with a 6 day old lamb and a couple baby ducks. Rylee absolutely loved the lamb and we couldn't keep her away from it. She also wanted to hold the ducks but we quickly realized that the ducks would not survive the way she was holding them. I think she almost squeezed them to death. Jordan didn't know what to think of the animals and kept her distance. I am trying to get Rylee to tell daddy we need to move to the country so she can have some baby lambs :)