Decannulation

We took Rylee to the special care clinic and to her pre-op appointment on Wednesday and she finally hit the 20 pound mark. She weighed in at 20 lb 4 oz. Nothing was changed with her feedings or meds and they are really happy with her growth during these past few weeks. We have been giving her extra pediasure just trying to get her to gain wait. She still isn't eating by mouth very well and is doing a little better with her thickened liquids. Jordan made a trip with to the doctor on Tuesday with daddy as she had a rash all over her body. The doctor didn't seem too worried and thought it was related to whatever virus or infection she had going on. Troy went back to Sedan, Ks this weekend and I had the girls to myself. I even took them to Burlington to celebrate my nephew's second birthday. It was a lot of work and it felt good to be able to load them up and take them out all by myself. We don't usually take Rylee out without two people in the vehicle as she needs constant suctioning and we had to make sure she didn't pull her trach out. Since she is capped she doesn't need suctioning as much and now she has an open airway so if she did pull her trach she would be alright for a few minutes. She had me a bit worried on Friday night as she was only satting 91% and didn't tolerate her cap once she went to sleep. I think it was just her telling us to give her a break as she seems to be doing much better. I was freaking out thinking her reconstructed airway might have been collapsing or there might be some scar tissue forming. We are scheduled for her bronch on Thursday and if all looks well we are sure she will be decannulated (trach removed). We will spend one night for sure in the hospital and then if all is well we will be sent home trach free! I have been looking forward to this day since the day she got her trach. We are very anxious for Thursday and we will keep everyone posted on her progress. I didn't get too many pictures this week. I will have to post some naked neck pictures next week.

Happy Father's Day and wow my girls are 18 months old already!

This is our very favorite doctor that we owe everything for saving Rylee's life on 1/1/09. The other picture is one of Rylee's NICU nurses that she had on a regular basis.


Happy Father's Day to you Troy. You are an amazing father to our precious baby girls. We went to Emporia for a picnic with our family and had a great time. I am very thankful that my dad was there and able to spend the day with us. He sure likes to scare all of us with his medical difficulties. His surgery on Monday went well and he is home trying to get better. The girls are doing great and every day gets better and better. Rylee is now wearing her cap over her trach almost all day and it is so wonderful. We don't have to suction her every five minutes and it already seems like a huge relief. Jordan got a fever on Friday and didn't sleep too well that night so I took her to the doctor on Saturday. She had a small ear infection and some redness in her throat. The doctor didn't want to culture her throat so he just sent her home on antibiotics. She already seems to be feeling better. We are praying that Rylee doesn't get sick before her procedure on 7/1/10. I gave the girls a bath tonight together and this is the first time we had them both in the tub at the same time. Now that we can cap Rylee's trach I don't worry as much about water getting down her lungs. They had so much fun together and Rylee laughed harder than I have ever seen her laugh. I wish I would have got it on video as it was so funny. I will post pictures after Jordan goes to bed as Troy is treating himself to a game of golf and I can't upload pictures and watch two girls very easy. Have a great week.

What a week!

On Tuesday morning my mom and dad were in the Ozarks trout fishing and my dad collapsed. He was life flighted to a hospital in Springfield, MO after suffering a heart attack. He was stabilized and then had another heart attack and even coded in his room. This sent him to the CCU and he had a heart cath yesterday. His heart has a lot of problems and he is going to have a pacemaker put in tomorrow. His heart is only pumping out 25 % of his blood supply and it should be pumping 50 %. It has been hard not being able to be there with him and my family. I am going to go to Springfield tonight so I can be there for his surgery. Rylee is doing so great and is wearing her cap for most of the day. We haven't had her sleep with it yet so that will be our next step. She is scheduled for her bronch on 7/1 and if all is well they will have her stay the night and monitor her while she is capped. I think the trach will come out following this. The nurse initially scheduled the bronch for 7/9 and I talked her into doing it on 7/1 so I hope Rylee is ready. I told her we were hoping to spend 4th of July without a trach. So please keep those positive thoughts coming our way. She isn't making much noise but that is to be expected as her vocal cords are still swollen from having the stent in place. Jordan is ready for her MiMi (nanny) to come back as she was off this past week. I was a single mom this weekend as Troy was canoeing with his friends in Missouri. We will be glad for him to get home within the next few hours and then we will head to the NICU reunion. Please keep my dad in your thoughts and prayers. This has been really hard on him and our family. He beat cancer and previous heart trouble so we have all the faith in the world that he will be fine.

June 9th

We went in today to get her stint out. The Dr. said that everything looked great. We will now start capping her trach so she has to breath through her mouth. We will come back in a month, if everything goes as planned, to get the trach out.

Rylee didn't recover from the procedure as well this time. We are having to spend a few extra hours here.

14 months adjusted

The girls are now 17 1/2 months old but only 14 months adjusted. Rylee is now walking very well and she hardly ever crawls now. We are unable to hear any of her little sounds as she has a stint in the reconstructed area and it will not allow air to flow through the vocal cords. We are very anxious for her bronch on Wednesday and praying for good news. Once the stent comes out we will be able to cap her trach and will be able to hear most of her noises that she makes. She started to eat this weekend and even took some of her thickened liquids today. We had a bit of a scare on Monday night. Rylee woke up at 11:45 p.m and coughed out some blood from her mouth and trach. It sure freaked her nurse out and she was ready to call 911. We decided to just call the on call special care doctor and she told us to stay home unless it happened again. Thankfully it didn't happen again and she hasn't had any blood since then. We are thinking maybe it was just a scab from her tonsils and hoping it didn't come from her reconstructed area. We got the baby pool out and put Ry's HME on and then put her mask over it and let her get in and play for awhile. I think she had more fun than us as we were worried she was going to get water down her trach. I didn't get any pictures as I was too busy with keeping her head out of the water and we had to suction a lot. Jordan screamed for the first few minutes and once Rylee was out of the pool Troy got her to calm down and then she had a blast. We are really looking forward to our neighbor getting his pool opened so we can just put Ry in one of her floats. We are going to the St. Lukes NICU reunion on Sunday and really looking forward to seeing everyone. It will be a little different this year as the girls will be able to walk around and play in the toys. That is if I take enough lysol! We are still having trouble with our nursing agency and it is about to send me over the edge. I think I am going to hand the responsibility over to Troy to handle from now on. We haven't had the coverage that we would like and it makes for some long nights around here. I even called another agency on Friday to see about changing our agency. We will keep you updated on Wednesday after Ry's bronch and hopefully we don't have to stay the night.

Feeling a little sleepy

We are trying to get Jordan to take only one nap a day and it has been a little rough on her. Thanks to our nanny she captured this on video today. Poor girl. She did get a nap after this video.