Sunday, June 28, 2009

6 month bear pics

I posted the girls one month bear picture and then their six month bear pictures that I took this week. Jordan weighed 12 lb 6 oz on Thursday and Rylee weighed 11 lb 2 oz on Monday. I was a little shocked that Jordan is only a pound bigger than Rylee because she looks so much bigger. Jordan got her six month shots on Thursday and the doctor is really impressed with her progress. She will go back to the pediatrician next month and then she will not have to go back until she is nine months. We will go to the Children's Spot at Saint Luke's with her next week and this should be our last visit with this doctor. Both girls have eye appointments on Wednesday and we are not looking forward to going. This should be their last eye appointment for awhile. I only have two more weeks until I go back to work so I am trying to get everything done and put together before I go back. My doctor suggested I put up a web cam so I can see the girls during the day and I told him this probably wouldn't be a good idea. We are still looking for someone to come watch Jordan in our home once Troy goes back to school. We want to send out a very special first birthday wish to my nephew Eli. Only six more months and we will be celebrating our girls first birthday. I better get to planning now.

Monday, June 22, 2009

Long day for Rylee

Rylee had an appointment at Children's Mercy today to get her trach site looked at because of some scar tissue that has me worried. While we were in the office the doctor seemed worried that she hasn't made any sounds around her trach and that she still can't tolerate her HME (artificial nose) so she sent us to the ENT clinic. She was afraid that there was more swelling or other issues going on. This of coarse sent me into a panic and it seemed like it took forever for Rylee to be seen. Rylee had a flexible bronch in the office and the ENT doctor didn't see anything that we should be worried about. This was very stressful for Rylee, mommy, and our nurse. We hate to see anything painful happen to our poor little girl. They did change out her trach with a trach that has a longer extension. Rylee seems to be getting a third neck so sometimes it covers the trach. This will also help her keep her HME on so she doesn't knock it off. We are still waiting to work with her on bottle feedings. She did impress the ENT doctor with her pacifier sucking ability. We are still very lucky that she hasn't developed oral adversion from not having any bottles. Jordan stayed home with daddy and was pretty fussy all day. She is normally a very good baby during the day so hopefully nothing is going on with her. I even checked her gums to make sure she doesn't have any teeth coming in yet. We have had some new nurses start working the evening shift and very excited that we have coverage. Our hours will go down starting August 1st so hopefully we can get her to sleep during the night. I am still going to go back to work in a couple weeks and the time seems to be flying by.

Saturday, June 20, 2009

6 months

My babies are six months old today! I can't believe it has already been six months since their crash arrival. We are so proud of our little angels and love having them home with us. We have had a very good week and not much going on. They went to the Saint Lukes Children's Spot on Thursday for their six month developmental screening and so far everything is going well with them. We were told that they could not see any signs of cerebral palsy at this time with either of the girls. This is a very common disability that develops with preemies so we will just have to keep a close watch on the girls. They were very pleased with the progress that they have made in their short little life. They both even showed them how they can smile too. Of coarse we were told to watch their preemie heads and to start doing more exercises with them so they don't get too stiff. Jordan's head is really flat on the side and Rylee's is getting flat in the back from laying on her back so much. We need to do more tummy time with Rylee, but it is so hard with her trach and her g-tube that sticks out pretty far. Jordan is really starting to laugh a little bit when she smiles at us and it just melts my heart when I hear her sweet little voice make sounds. It is becoming very hard to not hear Rylee make the same sounds knowing that if she could she would be laughing right along with her sister. She definitely talks with her eyes and loves to smile when you talk to her. We have a busy week this week with two doctor's appointments and tiny k coming to our house for developmental screenings. Troy will be enjoying his first Father's Day at home with his girls tomorrow. We enjoyed a visit from Grandma Webb and Great Aunt Elaine today.

Sunday, June 14, 2009

NICU reunion

We attended the Saint Luke's NICU reunion today and had a great time. This will probably be our only outing for awhile, as it is a bit much for little Rylee. She still can't tolerate her HME (artificial nose) which helps her humidify the air. If she doesn't get humidified air her secretions become very thick and she could plug up her trach if we are not careful. It was great to see all the staff and we were really glad we got to see a couple of the girl's primary nurses. We were a little disappointed that only one of the doctor's was there. I met a lady that had quintuplets and one of her daughter's was trached for 18 months. She had subglottic stenosis just like Rylee has. This really gives me hope that Rylee will be able to get the trach removed next summer. I have been reading on-line and most of the babies that have trach's are over two years old before they get their trach's removed. The girls and I survived our weekend without daddy. Thanks to my mother I was able to have some help and even got a full night sleep. Our only appointment this week is at the Saint Luke's Children's spot for the girl's six month developmental screening. I can't believe they are going to be six months on the 20th. They turned 25 weeks yesterday (10 weeks adjusted).

Wednesday, June 10, 2009

We have had a pretty relaxing week so far. The Tiny K (infants and toddlers) staff was out today and they will be doing assessments on the girls due to their developmental delays. They will be getting speech, occupational, physical, and many more therapies if needed. Rylee has an appointment with the pediatrician tomorrow morning and I am really not wanting to go. We know she is doing good and it is such a hassle to get loaded up and wait at the doctor's office for a quick check. Our last two visits have taken us about two hours to get in and out. At least we don't have to drive clear to Children's Mercy which takes us an hour to get there. As most everyone knows I have been blessed to be off work since the girls were born on 12/20/08. I am going to be going back to work on 7/13/09 and I am very nervous about leaving my baby girls. They will be left in very good hands with daddy and the day nurse, but I am still very sad that I have to go back to work. I would like to send a quick thank you to all the department of corrections staff that have made this work for me and my family. We are very grateful that I was able to take this much time off. We are still looking for someone to come watch Jordan once daddy goes back to work in August. Rylee will be able to stay here with the nurse until her trach and g-tube are removed.

Sunday, June 7, 2009

24 weeks/ 9 weeks adjusted

The girls turned 24 weeks yesterday and it is hard to imagine they are going to be 6 months old on the 20th of this month. They both had their eyes tested on Thursday and have both grown out of the ROP, but still are not developed as they should at this point. They will be checked again in one month and then that will be our last eye appointment for awhile (thank god)! I don't know if I can continue to see them get checked again anytime soon. We have taken Jordan out with us a couple times recently and she does great. We went out to lunch, shopping and to a BBQ. Having one baby is a piece of cake!! We feel very guilty leaving Rylee at home with the nurse. We got permission from her doctor to take her to the St. Lukes NICU reunion next weekend and we are looking forward to going out as a family with no nurse with us. This will probably be the only outing we will have with her besides doctor appointments for a few months. We are really looking forward to showing the girls off to the NICU staff and I am sure they are going to love seeing the girls. These little girls have come along way since they seen them last. The last time they seen Rylee was when she was a very sick 4 pound baby. We should have our overnights covered except for Sunday nights. This will make life alot easier on us, as we will get sleep.

Wednesday, June 3, 2009

Sorry no pictures tonight

Rylee had her appointment today with the special care doctor at Children's Mercy. We were in with the doctor and her staff for over an hour going over everything. She weighed in at 10 pounds 4 ounces. They are very pleased with her weight gain and only increased her 5 more ml every feeding. We can even try to skip a feeding during the night if she is asleep. We are not working too much with the bottles anymore because she has not seemed too interested in them lately. The doctor wants OT to start working more with her on this. She has some granulation tissue (scarring) around her trach area that we have to apply some cream to a few times a day. If this doesn't heal up she will have to have it lasered off. She has also been having some gross yellow drainage from her trach area so they have sent a sample off to the lab. We don't have to go back to see this doctor for a month since we are seeing the pediatrician every two weeks. Today was a huge eye opened for me at the clinic. I seen a couple little kids that were trached and on ventilators. This makes me very thankful that Rylee doesn't have to be on a ventilator too. Just when I start to feel sorry for myself I see what life could be like and I count our blessings. Both girls have to go to Children's Mercy tomorrow for their eye exams. This will be no fun for all of us.