Sunday, January 31, 2010

Ready for Spring

Jordan fixing her hair.

Our little rock star!

Jordan and Maddie having a heart to heart.

Maddie turned 5 on Friday and we are so lucky to have her around.

We are starting to get some Spring fever around our house. The girls haven't been out of the house for a couple weeks so I am sure they could use some outings. I can't wait to take them out of the house for walks. I have heard that RSV has several babies hospitalized so we will continue to shield our babies. They received their fourth synagis (RSV) vaccine on Thursday. My mom was here watching Jordan and got to hold them while they got these shots in both legs. She actually said it wasn't too bad. Our poor nanny caught a stomach virus on Monday and didn't get to come back for the rest of the week. I think she was pretty sick with it and I am glad to hear she is doing better. I was very paranoid that the girls would get it and we are very fortunate to stay healthy here at our house. Daddy got to stay home from school a couple days and then my mom was here on Thursday so that worked out well. Troy had three games last week and three games scheduled this week. This makes for some busy evenings for me. Jordan has been going to sleep around 6:00 p.m. and waking up once during the night for about an hour. We are letting her cry and just trying to go in every few minutes to lay her back down. I am hoping that she will eventually be able to go back to sleep on her own. Rylee is starting to pull up to everything and starting to use her legs more. Jordan is standing for a few seconds so I am sure walking is in her future very soon. No big plans this week other than Tiny K will be here on Wednesday. We actually don't have any doctor appointments scheduled until March unless they get Rylee a swallow study scheduled. I am trying to save my vacation and sick leave for Rylee's big surgery this summer so I am glad I get the month off from having to use leave.

Sunday, January 24, 2010

Rylee is crawling!

I had to get Rylee a new rocking chair so we can do her tube feedings

in as she is too big for her swing now.

I don't know what mommy is thinking. I sleep just fine!

She carried this balloon in her mouth for awhile.

The girls last Monday when K-State played Texas. Go K-State!

Rylee is officially crawling now. She has been going backwards and army crawling for awhile, but just learned how to go forward on Saturday. I actually caught it on video so I will post it so you can see how cute she is. We are still trying to get our minds wrapped around what is going to happen with her surgery. She is a very strong little girls so I know she will do fine. Jordan had another hearing screening on Tuesday and is still passing on the bottom of the scale. They want to see her back in six months just to keep monitoring her. The hearing specialist thinks that it is probably just fluid in her ears that is causing her some trouble. We don't have any appointments scheduled until March so that is going to be really nice. Rylee may have to go get her swallow test at CMH if they get it scheduled. We have Tiny K here on Wednesday and I can't wait to show them how Rylee can crawl now.

Thursday, January 21, 2010


Rylee had her bronchoscopy today at CMH. We arrived there at 9:00 a.m. and they had her in surgery at about 10:45 a.m. There isn't much change with the swelling of her airway so they are going to have to do some reconstructive surgery in order to get her trach removed. The doctor isn't too sure how much surgery she will need so we won't know all the details until they get in and start the surgery. They will take some of her rib cartilage and place it in her airway to help open it up. I will post the official definition of this procedure at the end of the post if you want to read more on it. The doctor said she would be in the hospital for a couple weeks and one of the biggest problems will be getting her off the pain and sedation medications. She will have a pretty big withdrawl after they stop sedating her. I am going to have to get myself ready for this big surgery. The doctor did let us know that this is a very serious surgery and they will have the operating room all day and it should take about four hours. We just need to keep her healthy so we can get this surgery scheduled for May. They are unable to schedule the surgery now because they put some medication around her scar tissue to keep it from getting worse. This has to be on here for a few months or it could cause some problems during surgery if it isn't healed enough. Rylee was a true champ today! I kept telling all the nurses and doctors to expect her to be very upset after her surgery and that she would probably need her mommy right away. That wasn't the case today. She didn't need much oxygen and came out of the initial recovery room very quickly and we went up to the recovery room and cuddled for a couple hours. The nurses made several comments that she is a very active girl and hard to keep still. I know Rylee will do fine with this surgery, but it is still going to take some time to get prepared mentally for this. We are looking forward to being trach free this summer so we will do anything to get there. Thanks for all the prayers for our little angel today. Jordan had a lonely day at home with her nanny and she was very happy to see us get home. 

The LTP Procedure in More Detail

A LTP is now considered the mainstay for the treatment of severe subglottic and tracheal stenosis.  Cartilage is harvested from the sixth to eighth rib.  The cartilage is shaped and then sewn into the cartilage edges of the tracheal incision (figure 2).  This opens the airway substantially to allow greater allow flow.  For severe lesions, in addition to an anterior (front) graft, a posterior (back) graft of cartilage can be sewn into place.  As this is the patient's own tissue, the rib cartilage grows as the patient and trachea grow.
The initial procedure may include decannulation (removal of tracheotomy tube).  If this is planned, the patient remains intubated with an endotracheal tube, ventilated by a respirator and sedated for several days.  This allows time for the graft to strengthen and heal.  Extubation (removal of the endotracheal tube) will follow.  This sometimes requires a follow up visit to the operating room.
If the LTP does not include decannulation initially, a tracheal stent is inserted to support the graft.  This stent is made of silastic, which is flexible and open.  The stent is modified in order to accommodate the placement of the patient's tracheotomy tube in front and below it (Figure 3).  The patient may be ventilated through the tracheotomy tube postoperatively for a few days.  This LTP approach includes stent removal and possible decannulation 6-8 weeks after the initial procedure.

Sunday, January 17, 2010



Jordan trying her big girl car seat.

Rylee standing!

Jordan hugging daddy after his basketball game. She cried

when she seen him. I think she was very confused when he came out

of the locker room.

This basketball game is boring.

We had a busy week with appointments and lack of sleep this weekend. Rylee had her scheduled appointment at CMH with the special care clinic on Wednesday and everything is going great with her growth and development. She weighed 17 lb 14 oz and was 27 inches long at this appointment. We talked with the nutritionist and we are able to decrease her formula intake by her g-tube as she is eating table food so well. The doctor asked where Jordan was with her speech and when I told her she will say a couple words and a few sounds she was surprised it wasn't more. She asked if her airway had been scoped since her release from the NICU and she was surprised it hasn't as she was on the ventilator for so long. The doctor hasn't ever met Jordan, but is wanting to be able to compare Rylee to her as much as we can. Not much really happened with this appointment and they want to see us again in two months. The doctor was disappointed with Rylee's recent bronchoscopy and is hopeful that she will not require surgery to get her trach removed. Our nanny and I took the girls in for their one year check up on Friday. Jordan weighed 18 lb 1 oz and was 26 1/2 inches. On the 25 week adjusted scale Jordan is in the 35% for weight, 16% for height, and 12% for head circumference. On the full term scale she is in the 5% for weight, and in the 1% for both height and head circumference. If I had seen these stats during the appointment I would have asked the doctor more about her head circumference. She went from 33% on 9/17 to the 12% on 1/15. Just a little concerning to me. Rylee weighed 17 lb 10 oz and was 27 1/2 inches long at this appointment. On the 25 week adjusted scale Rylee is in the 28 % for weight, 48% for height, and 80% for head circumference. I asked the doctor if it was possible that she could grow 1/2 inch in two days and he said it was possible. I don't think this height was accurate. On the full term scale Rylee was in the 3% for weight, 5% for height, and 44 % for head circumference. I have one big head daughter and one small head daughter. The girls each had to get four vaccines each and that was no fun for anyone. They don't have to go back to the pediatrician for three months so that is nice. Rylee is going to have to have another swallow study done as I noticed some of her carrots in her secretions the other day. The doctor thinks that she probably just didn't swallow good enough and it went down her airway. I was afraid they were going to tell me to stop feeding her until we could get her in for a swallow test. She is still just taking a few drinks of yogurt juice when she is eating. We are making progress with liquids so that is exciting to me. We have another busy week with doctor appointments and Rylee is having another bronchoscopy surgery on Thursday. Jordan has a follow up hearing test on Tuesday and Rylee has to meet with Anesthesia that same day. We are praying that Thursday goes smoothly and the doctor is able to do some more dilating of her airway to get her airway to open up. I am also praying that Rylee handles the procedure better than last time and she recovers from the anesthesia better. We are still working on a sleep with Jordan and she has her good nights and bad nights. We have had a couple bad nights and looking forward to some sleep this week. She will now go to sleep at night without having to be cuddled, but just wakes up a few times and wants held. This is all Troy and I as we have cuddled her to sleep since she has been home. Poor girl doesn't know any different. Keep my baby girl in your thoughts on Thursday and I will post an update when I get a chance on Thursday night. I will post pictures when I get more time later today.

Sunday, January 10, 2010

Just relaxing

We have had a very relaxing week. I had to re-schedule their one year check up as it was just too cold and the roads were still a little slick. We have enjoyed our last few days at home just relaxing. Well, there isn't much relaxing with these two girls. I haven't even dressed the girls this weekend and they have just worn their PJ's all day. Rylee has a regular scheduled appointment with the special care clinic a CMH on Wednesday and then they have their one year check up on Friday. We are working on getting Jordan to fall asleep on her own and it isn't going so well for her. I have been reading some books and some material on-line and they all say the longer we wait the harder it will be so I thought we better get started. Our little Rylee is a very good sleeper. She will fall asleep when you put her in her crib and usually sleeps 10 to 12 hours at night. I think her extra days in the NICU and that she has not always liked being held has had alot to do with this.

Thursday, January 7, 2010

Tuesday, January 5, 2010

12 month bear pics

Our big furry girl looking beautiful in the snow.

Alot of sleeping in our house.

I thought I better do an update for this past week as I got verbally reprimanded by my uncle last night for not getting one up on Sunday. This is for you Uncle Fred! We have had a great week with the girls and just trying to stay on top of them. They got their third synagis shot (RSV) on Thursday and both seem to be doing better with them. Rylee weighed 17 pounds and Jordan weiged 17 pounds 10 ounces. I think Rylee is going to catch her before too long. Rylee has really taken off with her feedings during this past week. If we could only get her to take her formula by mouth. We take one thing at a time with this girl. She seems to reach her milestones when she is good and ready. She is now getting 1/2 of her special digested formula and 1/2 of Jordan's high calorie preemie formula. We had Tiny K (infant and toddlers) here today and she has seen some huge improvements with both girls. She thinks Rylee will be crawling by tomorrow! Oh NO! How am I going to keep up with two girls? Jordan has found the toilet and Maddie's dog dish so it is very interesting keeping up with her. We survived several nights of no night nursing this past week and we were so happy when our regular night nurse was back on Sunday night. Our nursing agency is not being very nice to us lately. We have the girls scheduled for their one year pediatrician appointments on Thursday so hopefully the weather is good enough for us to get out. They will get their one year immunizations so I am sure they can wait for another day. Rylee had to give her daddy a hard time on Saturday after she pulled her trach out while jumping in the jumperoo. Daddy wasn't sure why he heard her crying and then he realized what had happened. Thankfully she hasn't done this to me yet, but I am sure it is coming soon. Oh and Jordan is saying Momma and Mom. Melts my heart! She has been saying Dad and Dadda for several months so it is so good to hear these words.