Our little miracle babies

Delayed post

2012-01-10T19:03:00.002-06:00

I totally forgot to post on Sunday and just remembered. I am going to upset a few of my family members and close friends but I think I am only post every couple of weeks from now on. I feel like our journey has slowed down and don't always know what to post. All of us ladies ended up getting the stomach flu last week and thankfully it only lasted a couple hours. I kept the girls home from school on Thursday to make sure they didn't pass it onto their friends. They started back today and seem glad to be back at school. We have been working on potty training for a week and a half and so far it is going very slowly. Jordan has actually went potty in the toilet or potty chair four times I think and Rylee has done it several more times than that. I don't want to push them that hard so going to give them a few days and see how it goes. If it doesn't get any better I might give them a two week break. Other than working on potty training and recovering from the flu we are all doing wonderful. If you are not already my friend on facebook come find me and I can keep you updated with the girls that way.

Sorry Uncle Fred! I know you love to see pictures of the girls.

New Years

2012-01-01T19:19:00.005-06:00

New Years Day will never be the same for our family. This is the day that little Rylee took a turn for the worse and was not expected to make it through the night. I know I have posted this picture before but just want to remember once again how blessed we truly are. She was so very sick in this picture and we really thought this was going to be her last living picture. Just goes to show the power of prayer and just how strong she truly is. I just can't imagine living life without either one of the girls. We spent part of New Years Eve over at some friends with the girls and then Jordan was ready to come home around 8:30 so we came home and bathed them and then put them to bed. Around 11:00 Jordan woke up crying and when I went to check on her I stuck my hand in some vomit! She told me she wanted to sleep in Rylee's bed. I got her all cleaned up and back to bed and she hasn't gotten sick since then. She was a little more cuddly and laid around most of the day. I am not sure what was wrong with her but very glad it didn't turn into the full blown flu that is going around. We took the girls to the dentist on Wednesday for their 2nd check up and they both did really good getting their teeth cleaned. The dentist asked if Rylee was still sucking on a paci and we let him know that she is no longer sucking on a paci but has instead started sucking her finger on a regular basis. He thought we should give her back her paci as finger sucking can do more damage to her teeth. I took them in for their 3 year old physicals on Friday and the doctor recommended I put some stuff on Rylee's fingers to try to get her to stop sucking them. I haven't tried it yet but will get it out sometime this week. They are both still very tiny compared to other 3 year olds but no concerns and the doctor doesn't need to see them for a year. Jordan weighed in at 26 pounds and was 34.5 inches long. Rylee was 28 pounds and 35.75 inches long. They are both at least on the charts and hanging in their weight wise. I talked to the doctor about potty training and he thought the girls should at least be trying more so I started taking them to the potty chair every 15 minutes for a couple days with zero results. I did get to clean up potty messes on the floor. I didn't try it today as Jordan wasn't feeling well so we will see how tomorrow goes. They both act very interested in going but just can't seem to go on the toilet or on the potty chair. Sorry no updated pictures today. I seem to be using my phone more for pictures so facebook seems to have more this week.

Merry Christmas

2011-12-26T07:39:00.003-06:00

I hope everyone had a Merry Christmas! We had a great time with the girls and I am so ready to just relax today at home before going back to work tomorrow. We have been partying for a week between all the girls birthday celebrations, school party and Christmas celebrations. The girls have more toys than we know what to do with. They were not too happy that the Christmas tree was taken down last night while they were sleeping. Jordan said "don't take it back"! If anyone knows me very well knows that I like to return things. lol It is so great having these little girls in our lives and after spending their first Christmas in the NICU it makes me even more grateful that they are here with us. They girls have a busy week with dentist appointments on Wednesday and then they go in for their 3 year old check up on Friday. I am sure the doctor will be very pleased that we have not even been in to see him since their 2 1/2 year check up! It is pretty amazing that they have not been in to see him for any sick visits. Rylee is now sucking her finger on a regular basis since we took the pacifier away. I am going to ask the dentist on Wednesday which habit is worse. I will get some pictures up this afternoon sometime.

3rd Birthday letter

2011-12-20T12:22:00.002-06:00

Rylee and Jordan-

As I think back to the day you were born, it's difficult not to feel the fear, the anger, or the excitement. I still have to think that there was some reason you were chosen to born so early. You were born months early and not fully developed, you never let that hold you back. You had to endure so much more than you should ever had to but you showed us just how strong you really are.

Jordan you had to have heart surgery, and Rylee you had to fight off one of the worse cases of MRSA that the NICU doctors and nurses had ever seen. We were even told that you were not going to survive. In the first months of your life you had to endure millions of heel sticks, several blood transfusions, tubes stuck down your throat, wires coming out of your body, and you had to grow and develop in a fake womb. It was hard to believe that you both would ever come home as healthy as you are now. After 96 and 138 days you both were finally home in our arms. You both are very determined and head strong little girls. It makes me so proud to think that you will carry that trait throughout your entire life. I know that for a fact because life will test you again and again. I hope that you will always be able to look back at your beginning and be reminded of just how strong and amazing you are.

Happy 3rd birthday to the best girls I know!!! Can't believe it has been 2 1/2 years since we brought you home as 2 bundles of joy thinking "Who on earth is letting us leave the hospital with babies on oxygen, monitors, g-tubes, trachs, meds and all that other preemie related junk, we have no idea what we are doing!"

Mommy loves you more than anything in this entire world.

Birthday Wishes

2011-12-18T19:49:00.009-06:00

We celebrated the girls third birthday today at the jump 4 joy in Lawrence and the girls had a great time. We had a lot of people show up to help celebrate these little miracles birthday. The girls wanted a Thomas the Train party and that is what they got. We met with the school district on Friday and needless to say our girls are doing fabulous and don't qualify for any type of special education classes. They went and observed them at their preschool a couple times and then several specialist met with them a month ago at the school and they think the preschool is a very good fit for them right now. They can always do another assessment if we ever feel like they are falling behind. They still don't believe me when I tell them that Jordan is the boss at home as she hardly says a word when she is around them. When we were walking out she looked up at me and said "CARRY ME NOW" as sassy as she possibly could and then they knew what I was talking about. lol Later that day our tiny k infant and toddlers coach came to have us sign the discharge paperwork and that was very sad for me as she has been with us since we brought both girls home. I am looking forward to the girls' actual birthday on Tuesday as I took the day off and it is their Christmas party at the school. Looks like it will be a good day to not have to drive to Olathe as we are expecting some snow. I still can't believe the girls are already turning 3! Pacifier update: We have lost several hours of sleep this week and each night does seem to be getting better. She has now started sucking her fingers so not sure that is a good thing. They have appointments with the dentist in a couple weeks so I will see what he has to say about that. The pictures I had taken last weekend for Christmas Cards and for their 3 year old pics and they turned out so cute.

Bye Bye paci

2011-12-11T16:02:00.004-06:00

We had our friend that dresses up for the santa in town come by before his gig at the station. We got our yearly pics with santa and then talked Rylee into giving him all of her paci's to take to all the other little babies. She did it willingly and then nap and bed time were not too much fun yesterday. She actually found one in her bed during nap so we had to hide that one and then she came out with one in her mouth later in the day. She actually went down for her nap really good today so I think we have succeeded with no more paci's. She has been extremely attached to her paci since the day the NICU gave her one. We always encouraged her to keep it in her mouth to keep her oral as she wouldn't ever take a bottle. Now we just need to work on potty training and getting out of cribs. I am in no way trying to make them grow up any faster than they already are but don't want to wait too long and regret it. They have shown a little interest in potty training but I can't seem to get them to actually go in the potty chair or toilet. Rylee has went potty twice but I think it was just a fluke that she actually went.

12/4/11

2011-12-04T18:50:00.004-06:00

We are starting to plan the girls 3rd Birthday and it still amazes me that they will be 3 in 2 short weeks. So hard to believe they are doing so well too. The school district went to their pre-school this past week and observed them during their class time. I haven't heard any results yet but so sad that we are going to have to say good bye to our Tiny K Coach. Troy starts basketball practice on Tuesday so it is going to get real hectic around here. The girls went to 3 basketball games this weekend and seem to really like going.

Thanksgiving 2011

2011-11-27T18:43:00.003-06:00

I have been off since Wednesday and it feels like I still need some time off to recover from our road trips. We went to Americus, Ks on Thursday and had lunch with my dad's side of the family and then I came straight home and went out shopping. I got the girls a few good deals on Christmas presents so couldn't pass them up. We left early Friday morning for Sedan, Ks and stopped off on the way to visit with a few of Troy's friends. We stayed the night with Grandma Webb and this was the firs time the girls have spent that much time with their other grandma. They couldn't quite understand why we were not going to my mom's house when we told them we were staying with Grandma Webb. The girls did really good sleeping and I was surprised they didn't wake up too much. We went to Fall River, Ks on Saturday for lunch with his mother's side of the family and then took off shortly after lunch to head back for Baldwin. We had to be up at a fundraiser for the pre-school and the girls even got to do some Christmas shopping for mom and dad and each other. The presents are wrapped and under the tree and so far they haven't opened them yet.

Fall Pics

2011-11-20T19:49:00.008-06:00

We had our first of many Thanksgiving dinners today. Was a little worried that we would have to miss it as Rylee woke up from her nap with a low grade fever. I gave her some advil and she was fine and never ran a fever again. Jordan started acting a little off after dinner and once we got home she had a fever too but she perked up right after I gave her some Tylenol. She was running around like crazy so I don't think it is too much to worry about. The girls will have their Thanksgiving day feast on Tuesday and then we will go to Americus on Sunday for dinner. We are packing up and going to Sedan for the weekend so this might be an adventure for us. Lets just hope the girls sleep good.

Here are the pictures we had taken a few weeks ago. These girls just melt my heart! One month from today they will be 3!

11/13/11

2011-11-13T18:59:00.007-06:00

This picture is the girls walking down the hallway at St Lukes when we went to the Halloween party. We walked down that hallway for 96 days and at the time I never even dreamed we would be this far with the girls right now. Made me tear up just a little bit.

I apologize for not getting a good post up this past week. My dad had surgery on Monday evening where they removed a large tumor from his bladder. We got good news Friday evening and he will not require any further surgeries at this time. He meets with the doctor on Tuesday to develop a plan of action. Thanks for keeping him in your thoughts and prayers. Our prayers were definitely answered and it is not as serious as it could have been. I ended up taking the girls with me to the hospital as my Aunt Peggy was back from Colorado to be here for dad's surgery so I bathed the girls in sanitizer and we were on our way. Not really but I am surprised I didn't as hospitals scare me because of all the germs. We were able to see my dad in his pre surgery room and little Rylee was terrified being in the hospital. She did seem to get a little more comfortable as the night went on. Troy came and picked the girls up before the surgery actually started and she would not leave the hospital until she got to say good bye to Pal Paw. We had teacher conferences on Thursday with the pre-school and the girls are doing very well. We were rather shocked with Rylee's test results. She can identify every letter, and almost all numbers to 20 and got all colors right except brown and the rectangle shape. We know she knows these so no worries with this little miracle. Jordan didn't do quite so good but did as good as she should be doing. The teacher told us that all this information is just extra and they should just be getting socialized and used to being in a structured setting. We had their school district screening the week before and they are still going to do some screening to see if they qualify for any services with the school district. They did hearing screenings and both girls passed. Both of Jordan's ear drums are moving and she only failed one of the frequencies so that means she is doing fine with her hearing. We have Tiny K (infant and toddlers) coming on Friday and so sad that our coach will have to discharge us when the girls turn 3. (next month)!

We just got home from Admire, Ks after attending a family gathering. My great Aunt was back from California and my uncle Fred was back from Colorado so he could go hunting and visit with my dad. It was so good to see all of our family.

Prayers for Grandpa

2011-11-07T14:35:00.003-06:00

Sorry about not updating yesterday. I didn't get home from a cake decorating class until late and then was up too early to get on the computer. Unfortunately my dad is going to be having surgery here in a couple hours to have a mass removed from his bladder. We don't know a lot of information right now but will be sure to keep everyone up to date with what is going on with him. Please keep my dad in your thoughts and prayers. He is the only grandpa that the girls have and we would sure like to keep him around for many more years.

Halloween parties

2011-10-30T12:33:00.005-05:00

I went with the girls to preschool on Thursday and we went trick or treating around the local business and then went back to the school to have a Halloween party. It was so neat to see the girls interacting with all the other kids. I guess Jordan had a tough day at school on Tuesday and had a hard time settling back into the whole school thing. They had a week off with the pumpkin patch and then they were off on Thursday. We celebrated Logyn Scoby's 2nd birthday and the girls loved being out of the house until 10 p.m. We went to Burlington yesterday so my parents could see the girls in their costumes and to attend the grade school carnival. They had a good time and even got to ride the choo choo train a couple times. We are going to St. Lukes this afternoon and the March of Dimes volunteer team that I am a part of is putting on a Halloween party for all the families in the NICU. The girls even get to go so that will be neat for them. I think they will need some good rest this week after this weekend and Halloween tomorrow. They are going to be assessed by the school district on Friday to see if they qualify for any services as we will be off the Tiny K program when they turn 3 in just a few short weeks. Yikes! I of coarse had to include pictures of the girls in the Hooter outfits. This is the 3rd year they have wore them and I attached a the pictures from 2009 and 2010. Someday these 6 to 12 month tank tops will no longer fit them and they will not have to be hooter girls anymore. Did you notice my new grill? I am now supporting braces at the age of 35. My dad reminded me yesterday that they spent thousands on braces when I was in high school so I better not mess these up too.

Pumpkin patch pics, etc

2011-10-23T18:56:00.008-05:00

We went to the pumpkin patch with the preschool on Tuesday and had a great time . It was so neat to see the girls interact with all the other kids. One little girl walked up to Ry when we walked up and hugged and kissed her and then sAid I lovE YOU. JORDAN SEEMS TO THINK I NEED THE CAPS LOCK ON RIGHT NOW! IT TOTALLY MELTED MY HEART SEEING THE LITTLE GIRL BE SO SWEET TO RY. THEY ARE BOTH EXTREMELY short compared to the other kids in the class. I think they are the youngest in the class so they have some catching up to do. We have teacher conferences in a couple weeks so we will get to see how they are doing in school. I am going with them to trick or treat on Thursday morning with the preschool and then they will come back and have a Halloween party. We went over to our friends yesterday to watch the KU vs KState game and the girls had a great time. We had family pictures taken today at Baker University and I can't wait to get them back. Jordan was the good girl today and Ry was her crazy self. After pictures we went and got some subs and had a picnic in the Lawrence park with our friends and their little girls. The girls loved the walk down Mass street to get ice cream as a special treat.

The picture of Jordy and the syringe made me laugh. We hadn't used Ry's gtube for several months prior to her getting it out in July and Jordy still thinks we can put stuff in her site.

10/16/11

2011-10-16T19:29:00.003-05:00

Rylee is continuing to heal great and we are noticing less and less pain with her tummy surgery. Her neck incision is looking great and her belly scar not so great. We are supposed to go back for a check up with both clinics on Friday but I am trying to get out of the visits so we don't have to make the hour drive to CMH. There is several other things I would rather do than spend a day at CMH. We went to Lebo on Friday night to watch my nephew Walker play football and they lost in OT which was very disappointing to watch. We didn't get home until 11:00 p.m. and then had the girls up early to go to the Maple Leaf festival so they could ride in their preschool float. It was a long day of walking around and getting through the crowds of people. We then went to KC to go to a birthday party for a triplet mom I volunteer at the March of Dimes with. The girls had a great time and came home and crashed. We went up to the Maple leaf festival again this morning and had breakfast and then this afternoon we went to the train depot and rode the train that goes right by our house. I am not so sure we should have started this as I do believe they will want to ride the train all the time. I am taking off on Tuesday and going with the girls to their pumpkin patch with the preschool and looking forward to seeing the girls interact with all their friends.

Surgery #15/16

2011-10-09T19:24:00.002-05:00

We took our precious little Rylee to CMH on Friday for her surgeries. She had her trach area revised and then had her G-tube site closed up. The surgeon had to do quite a bit of work to get the area to close up and it actually looks worse than when she went in. He said it would have been too big of a scar for him to cut out all the scar tissue so he decided to just get the area closed up. She could go back in for more work in a few years but I am pretty sure we will just call it good. I guess the ENT surgeon teased the GI surgeon a lot about her scar being prettier than his. The whole surgery took about an hour and then we were in the recovery room within 30 minutes. They had to put her in isolation so she was in a room all by herself and then she couldn't go into the second recovery room due to her MRSA. So we were in and out pretty quick. They sent us home with some oxycodone as her belly was really sore for the first few days. She had a hard time getting up and if we would pick her up she would cry. I had a trip planned to attend the Manhattan vs Missouri football game so I went ahead and went. I had some major mommy guilt the whole time. Jordan went to Burlington and spent the night with Grandma and Grandpa and had a great time. We are so glad that this surgery is behind us and we can move forward.

10/2/11

2011-10-02T18:39:00.006-05:00

We had a crazy busy weekend. I took both girls to CMH on Friday for Rylee's appointment with pre-op and all went well. We are still haunted with those yellow gowns and blue gloves due to Rylee having had MRSA. You wouldn't think that something so simple as a yellow gown would bring back all those horrible memories of her first few days. I have told the hospital several times that she has been cleared and has had several negative cultures but for some reason they want to get her nose swabbed out now. She will have to have 3 separate swabs before they can clear her again. I am hoping we are only at CMH a couple more times before we can say bye to that place for good. We went shopping for a little bit after the appointment and then came home for some late naps. We then went to my 16 year old nephew's football game and the game only lasted one half as they were winning 50 to 0. The girls had a great time and kept us all very busy chasing them around. I had a baby shower in KCMO yesterday so Troy stayed home with the girls and then I enjoyed an evening out as well. We ended the weekend with a trip to Cider fest in Louisburg and then went and did a little more shopping at the mall. The girls are really into shopping lately but all they want to look for is Thomas the Train stuff. Rylee is tentatively scheduled for 2:00 p.m. on Friday so please keep our little girl in your prayers as she has the final two surgeries related to her premature arrival.

9/25/11

2011-09-25T17:23:00.004-05:00

Ry's surgery has been scheduled for 10/7/11 and doctors from the ENT and surgery clinic will be able to perform both surgeries on the same day. I am really glad they were able to get these scheduled together and even happier that it was scheduled on one of my days off from work. We will go meet with anaesthesia on Friday and she will get her physical on that day as well. I have been telling her that the doctor is going to fix her "ouchies". I still can't believe this will be her 10th surgery since her NICU release and 15th surgery of her little life. That is not even counting all 4 of her chest tube procedures that have left some nice scars on her sides. She is star of the week this week for preschool and I loved writing a little bit about her on her poster. I took Jordan to school on Thursday and it was actually the first day that she has had absolutely no tears during the day or at drop off or at pick up time. We went up to a softball game yesterday and there was a little boy from their school there as well and it was really cute seeing the girls interact with him. Tiny K was here on Friday and we are really sad that this was one of the last visits we had with our case worker. She has been with us since we brought Rylee home so we have really gotten to know her very well. I am going to call the school district this next week and get a 3 year old assessment. We are pretty sure they will not qualify for any type of services but want to just get them assessed just flagged in case they need need services later on. They will do a hearing test so that is good for Jordan since she still hasn't passed any of her hearing test.

Happy Birthday Daddy!

2011-09-18T20:54:00.000-05:00

We celebrated Troy's birthday this weekend and we loved hearing the girls tell him Happy Birthday. I took the girls to CMH on Friday for Rylee's appointments in the ENT clinic and surgery clinic and now we just need both clinics to get together and schedule her surgeries. She will have her g tube site sewn shut and then the ENT doctor will do some work on her trach site to clean the scar tissue up. The surgeries won't be too complicated but still no fun for Rylee. We will have to go back and see the pre op team before so hopefully this will be our last few visits to CMH. Preschool is still going well and we are down to Jordan only crying for a minute or so when the nanny drops her off. Hopefully this week she will start to warm up more and not be so upset about going to school. They both talk about school and their teachers so I know they are enjoying it. I have to work late on Thursday so I will drop the girls off for school and I am looking forward to seeing all the kids and talking with the teachers some more.

The Webb girls

2011-09-11T15:35:00.008-05:00

The girls have been to preschool 3 times now and so far so good. Jordan is still crying off and on during the day but the teacher said it was only during transition from one activity to another. I ran into to the assistant teacher on Thursday and she let me know that the girls are doing great. I guess Rylee is quite the know it all and answers all the questions. She was surprised that she knows all of her colors, shapes, numbers, and the alphabet. We are truly amazed with these girls. They are starting to talk in full sentences and I love it! We still haven't had much luck with the potty training. Rylee has went on the potty chair two times so far. We are not pushing it and just introducing it to them so hopefully one day they will surprise us with wanting to be potty trained.

Thanks Uncle Lee and Aunt Nancy for the feathers and tinsel. We were in Burlington yesterday and Aunt Kayla and Aunt Kim were very excited about getting the girls some feathers in their hair. They think they are pretty hot stuff.

Bee ginner preschool

2011-09-04T19:11:00.005-05:00

The girls start school on Thursday and so far it has went much better than I expected. When we walked in the door Ry went right in and started playing with the toys and Jordy didn't get too far from me. I talked to the teachers just briefly and as Jordy was sitting down playing with play dough I walked out and no tears on either part. I came home to an empty house and just enjoyed my morning off from work. Troy came with me to pick them up and as they opened the door Jordy came running out with the saddest cry ever! She went right past me and straight to her daddy. The teacher let us know that she had a few sad moments and would cry for me and they would find something for her to do and she would be fine. I asked them today if they were ready for school and they both said "stay home". I think we are in trouble! It has been a long nice enjoyable weekend. Troy went on an overnight golfing trip and I went to Roeland Park, Ks yesterday to visit with my best friend from Fort Collins. I took the girls shopping for a little bit and that didn't go too well. All they want to do is shop for Thomas the train stuff. We are thinking about going to the Renaissance Festival tomorrow.

Rylee went potty in the potty!

2011-08-28T18:59:00.004-05:00

I have had a potty chair in the bathroom for a few months now and usually just sit the girls on it before their bath and finally tonight Rylee went potty! I was so excited and had to get the camera out for some pictures. I didn't get any pictures taken this week other than the two of the potty experience. The girls start preschool on Thursday morning and will go on Tuesday and Thursday mornings for 3 hours. They will go tomorrow to meet their teacher and see the classroom and our nanny is going to take them and pick them up. I will stay home a half day on Thursday so I can be there for their 1st day. I am trying to stay strong but not so sure I will leave without any tears. I don't know if I am sad because they are growing up or just the fact that they are doing well enough to even go to school. I never imagined this day would ever come after seeing them fighting for their life just 2 1/2 years ago. We had another busy weekend. I took the girls to Burlington Friday to get our hair cut and they spent the night with my parents. Then Saturday we had a swim party with all the March of Dimes families that I volunteer with. Today we went to Emporia to celebrate my Uncle Lee's 60th Birthday at the Pizza Ranch. I am trying to get the girls to settle down so I can get them to bed early as they are not going to know what to think about getting up early. Rylee is in her crib singing "Happy Birthday" right now and Jordy is telling her to be quiet. They have really been sleeping in lately. Ry slept in until 10:30 on Friday morning. They will have to get up at 7:00 a.m. on their school days. Please think of us this week and I am hoping we don't have any preschool drop outs!

Busy Weekend

2011-08-21T13:06:00.008-05:00

We have had an extremely busy weekend. I took the girls to Worlds of Fun on Friday with my family and we had a great time. The girls behaved wonderful and we really enjoyed ourselves. Yesterday we went to a family gathering in Emporia and had a cook out and then today we are just resting and getting housework done. We had Tiny K here this week and nothing new to report with them. They will stay in this program until they are 3 years old and then we are on our own. Truly amazing! We couldn't be any prouder of our girls.

8/13/11

2011-08-13T15:13:00.004-05:00

Thought I would post a day early as I am volunteering in the NICU tomorrow and it might be a long day for me. Troy and I took the girls to the Johnson County fair today and they had a great time seeing the animals. I am really going to have to get to work on Troy on getting a house in the country so we can get the girls into 4H when they get a little older. We are just relaxing this afternoon and waiting on our AC repair man to get here. Looks like we are going to have to replace our AC before the summer is over. Rylee's g tube site has completely closed shut so it is looking like she won't be getting any "pretty" work done on it. She asked me this morning "where did my button go?" She has also noticed her scare on her neck and gets upset and says "ouchy". I think she is wondering where all these scars came from. Poor little girl :( I am getting excited about them start pre-school in a few weeks. We have our Tiny K worker coming on Wednesday and then I am taking the girls to Worlds of Fun on Friday with some of my family. I hope the weather stays nice so we can enjoy ourselves.

8/7/11

2011-08-07T18:03:00.004-05:00

Yes, we are still around. I didn't get a post written last week and I did get verbally reprimanded by my uncle. Life just isn't as complicated as it once was for us and not much to say other than our girls are absolutely adorable and a huge handful at the same time. Rylee is doing fine without her feeding tube and seems to be a bit sad that it is gone. She will lift her shirt up and say "ouch". It still has some drainage coming out of the site but we are not even keeping it covered as it irritates her skin too much. I am sure we will have a few stained shirts after this all over with. We are supposed to call the surgery clinic in a few weeks and let them know if it is still draining and if it is not they will not do anything to the site. We are really wanting them to close it up as the area looks pretty bad. She already has enough battle wounds and I am sure she would appreciate it looking better when she gets older. Troy has been out of town since Thursday and I have handled the chaos without any major issues. I am just glad I have a lot of good meds! lol I took the girls to Burlington today to see my parents and sister and her family and we had a great time. We swam across the street at the pool and the girls loved it.

2011-08-01T14:25:00.005-05:00

Pictures from Great Wolf Lodge

2011-07-31T19:26:00.002-05:00

No pictures tonight. For some reason the site won't upload them. Maybe tomorrow.

Exciting News!

2011-07-23T18:29:00.004-05:00

We took the girls in for their 2 1/2 year check up on Friday and talked the doctor into removing Rylee's G tube! We haven't used it for a few months and she seems to be doing fine without thickening her liquids so we felt it was time to get it out. It is going to be so nice to not have to worry about her pulling it out on accident. The site looks pretty bad and will probably require surgery to close the hole. It is still leaking quite a bit so we are just keeping it covered. Jordan seems very concerned over Rylee not having her "button" anymore. Jordan was even kissing Rylee's "owie" tonight. Rylee has been gaining weight really good and weighed in at 26 1/2 pounds and was 34 inches long. Jordan has only gained two pounds during this past year and weighed in at 24 1/2 pounds and was 33 inches long. We talked to the doctor about his thoughts of getting the girls into a preschool program and he thought their immune systems will be able to handle it. He was surprised that we haven't been in for very many sick visits since bringing the girls home. After we left the appointment we went to the preschool office and put a deposit down to hold two spots for this next semester. They will start going on 9/1/11 and will go two mornings a week for three hours. I am so excited for them! I am just hoping we don't have any preschool drop outs. We will still have our nanny come on those days as she will have to take them and pick them up from school. We took the girls to the Great Wolf Lodge on Tuesday night and had a great time. Jordan was not too excited about spending the night and eventually fell asleep right beside me and didn't leave my side all night. Rylee slept in the same bed as Troy and fell out of bed during the night and didn't even cry. They were both up bright and early and we went swimming for a little bit and then went out to lunch and then went to Cabelas and they loved all the animals. We are having a relaxing weekend at home this weekend. Troy played in a softball tournament today in the 104 degree heat and I stayed home with the girls. I am going to go volunteer in the NICU tomorrow so I am excited about that.

Pictures

2011-07-14T20:11:00.001-05:00

If you want to see some cute pictures go to this site:

http://www.kdog.info/

Go to the Client Area icon and the password is kwebb.

7/10/11

2011-07-10T15:56:00.004-05:00

Nothing too exciting going on with us this week. We took the girls to KC on Friday to get their pictures taken at Nelson Art Gallery and Rylee put on quite the show for the photographer. She didn't have to work at all with her and Rylee just kept posing like she knew what she was doing. Jordan on the other hand did not do so well. I think the noise from the cars driving by about sent her over the edge. It took us 30 minutes just to get her pried off of us and not crying. I am sure she will have a couple good pictures but nothing like miss Rylee. We then went to Crown Center and played at the Crayola Store and then met some friends for lunch at Fritz's. It is a restaurant that has trains going around and they drop the food off at your table. It was pretty loud in the restaurant and the girls were actually scared of the trains. I thought it sounded like a good idea! lol We went to my cousin David's wedding on Saturday and I think we seen like two minutes of the ceremony until we took the girls out of the ceremony. They were all over the place! I was exhausted after chasing them down for a few hours. We have Tiny K coming on Tuesday and I am excited to see what they have to say.

One year trach free anniversary!

2011-07-03T15:34:00.003-05:00

Rylee has now been trach free for one year and we couldn't be any happier than what we are. Living life without the trach is so much better. We actually get sleep now and most importantly Rylee can breathe! She still amazes us with how well she is doing verbally considering she has only been able to make any type of sound for one year. She repeats everything we say so we really have to watch what we are saying around her. lol We took the girls out on lake Clinton on Thursday night for a few hours and had a great time. Jordan didn't know quite what to think about it and Rylee absolutely loved it and even drove the boat. We are going to Lebo tonight to celebrate the 4th of July and not so sure we will stay and watch the fireworks. I have a feeling the Jordan will not enjoy the noise at all. She is still very sensitive when it comes to loud noises. She even demands to go inside the house if a loud vehicle drives by. We will see the doctor again in July and see if he thinks we should get her in for another hearing test. I hope everyone has a wonderful 4th of July!

Birthday parties!

2011-06-26T15:34:00.003-05:00

We celebrated my nephew Eli's 3rd Birthday and then had a surprise 60th Birthday party for my mom yesterday. I am pretty sure the girls had a few pieces of cake. Rylee kept sneaking a spoon and just helping herself. We need her to continue gaining weight but I am pretty sure it isn't supposed to be from eating cake. I got the girls hair cut while we were in Burlington and they both look so cute with their new cuts. Rylee had a rough week this week. She got stung by a wasp and then a coupe days later she fell down our deck stairs. She ended up scrapping up her eye and face pretty good. We will celebrating being trach free for one year on Fri

Happy Father's Day!

2011-06-19T18:11:00.004-05:00

It is hard to believe that the girls will be 2 1/2 tomorrow. We had a great Father's Day today. We went to a family picnic and then took the girls to the Emporia pool and the girls loved it so much. They love the water so much and I think we will need to get them into swimming lessons soon. I took them to Melvern lake yesterday and had a hard time controlling the both of them by myself. We had the girls dentist appointments this past week and the girls were excellent. Jordan still doesn't have her two year molars yet and Rylee has about half of hers in so far. They both did really good and didn't even cry. Jordan still has a pretty high palate due to being on the ventilator for so long and she actually has a line in her pallet from the breathing tube. The big concern right now is just making sure it doesn't affect her speech. Rylee still has yellow teeth and we are hoping her permanent teeth come in white and not yellow. Her special care doctor once told me that she would still have a boyfriend and I shouldn't worry. This is the least of my worries right now. Rylee weighed in at 26 pounds this week and is 34 1/8 inches long. She is really doing a great job at gaining weight without the help of her gtube and pediasure. Jordan is still hanging around 24 pounds and is a tad bit shorter than Rylee. They are both under 5% on the scale so still keeping their short stature. We had the chance to get the girls into a good daycare here in Baldwin and both agreed that we are going to keep our nanny here in our home until the girls go to school. We are very glad that nanny MiMi has agreed to stick it out with us. She is wonderful with our girls and they love her very much. I included some pictures from last Father's Day to show how much the girls have grown. We are coming onto Rylee's one year trach free anniversary!

Two Week Post

2011-06-12T13:39:00.005-05:00

Sorry I didn't get a post written last week. I enjoyed by four nights in the Florda Keys with my two best friends. We had a great time and it was a much needed break for all three of us. We laughed the entire trip and had way too much fun. We stayed in Jessi's Aunt and Uncle's guest house and had a great ocean view from our place. We did talk about our kids a bunch and it was great hearing stories about all of our kids. I only talked to the girls one night as it was just too hard for them and Troy didn't like hearing them cry. I came home to two happy girls and it seemed as if Troy took great care of them. I don't think I will be leaving them anytime too soon as it was pretty hard being away from them. The girls and I went to Burlington on Friday night and walked in the Relay for Life walk. The girls had a great time and we even lasted until 10:15 p.m. I am taking them to their first dental appointment tomorrow so wish me luck!

No pictures

2011-05-29T19:00:00.002-05:00

I am sure this is going to disappoint a few people but I don't have too many pictures to post this week. I will try to take some tomorrow and get them posted. I turned the Big 35 on Monday and loved coming home to my girls and hearing them say "Happy Mommy" and then trying to sing Happy Birthday. They were very happy to have cupcakes that were made by nanny MiMi. The girls spent the night with my parents on Thursday night and according to grandma and grandpa all went well. They took them to a dinner at the hospital and got quite a bit of attention. They even got to have Birthday cake for all the cancer survivors. Troy and I went to the Wine Fest fundraiser for the March of Dimes at Union Station and it was amazing to see all the support. We then took advantage of the free baby sitting and went to a movie. Troy took the girls back to Burlington on Saturday so he could go watch State Baseball and I went to KC to get my hair done. I am going to the Florida Keys this week with my two best friends from Reading. We are leaving on Thursday and then getting back Monday afternoon. This is my first time to leave town since the girls were born and I am a bit nervous about leaving them for so long. This trip couldn't have came at a better time as Jill's family lost their family home and Jessi's family lost their family owned grain elevator in the tornado last week. It will be so nice to get to spend time with each other and be able to lean on each other for support. I went to church today in Reading and was overwhelmed with seeing the damage. I still can't believe this happened. It did feel good to see that everyone is okay and handling the situation so well. I will not do a post next week as I will be in Florida enjoying my time away. Daddy will be holding down the fort so wish him luck!

Devastated

2011-05-22T20:36:00.004-05:00

I am very saddened that the town I grew up in was destroyed by a tornado last night. The town has only 250 people that live in it and over 20 of the homes were completely destructed. I don't have any family that still lives in Reading, Ks but all of my friends families still live there and the community has always been family to me. I am not looking forward to the day that I go visit the area and see all the damage. Please keep all my friends and their families in your thoughts and prayers.

We enjoyed the day yesterday in Emporia, Ks at my sister's graduation and party and the girls went without a nap. Lets just say I will not do this again anytime soon. They had some melt downs when we got home. We then had to wake them up at 10:00 p.m. to go take shelter at our friends house due to some tornado warnings in our area. We stayed there until midnight and then were able to come home. I think we might just have to look for a house that has a basement now. I went to the NICU family room today to volunteer and met some great families that have babies in the NICU. I was able to talk to a women who gave birth to twins at 26 1/2 weeks and was able to give her hope that her babies will be just fine. It is hard to tell someone like that about our journey as it was such a hard road and I don't want anyone to have to go through what we did. I will celebrate my 35th birthday tomorrow and all Rylee has to say is "I like cake"! I do believe we will be celebrating with some cake. lol

Tiny K/Infant and toddlers update

2011-05-15T20:38:00.004-05:00

We had Tiny K here on Wednesday night and we couldn't be prouder of our little girls. The program was developed for kids ages 3 and under that are developmentally delayed. We were expecting the girls to be in the program until they were 3 and then transition over to the school district system. After talking with our specialist she doesn't feel the girls even qualify for Tiny K anymore and doesn't think they will qualify for services thru the school system as well. We are really shocked with how well the girls are doing right now. They amaze us daily with what they know and are so eager to learn new things. I am still so impressed with Rylee's speech considering she has only been able to make noise for 10 months and having a paralyzed vocal cord on top of that. We will probably try to get them into some sort of pre-school this next year if our pediatrician feels it is safe enough for them to be around all those other germy kids. lol I enjoyed a day out with five other Baldwin ladies yesterday and didn't get home until 2:00 a.m. Lets just say I am way too old for that! I took the girls to the Legends today to meet my sisters and family at the Trex cafe and the girls were a little overwhelmed with the surroundings. We made a couple of build a dino's and they are scared of them and didn't want them in their room tonight. So far Ry is doing great with no thickener in her drinks and it makes it so much nicer for us to not have to worry about it. She is still coughing some but hasn't gotten sick so that is a good sign.

Mother's Day and Rylee's 2 yr homecoming day!

2011-05-08T19:42:00.003-05:00

Yesterday was Rylee's two year homecoming day. I never would have imagined that this child would be doing as good as she is doing. We brought her home and she needed 9 different medications that we would have to give her every three hours. She was also 100 % g-tube fed until recently. We are no longer giving her any type of medication and no longer using her g-tube. She will probably keep the g-tube in until next spring. We want to make sure she stays healthy before we remove it. We went to CMH on Friday for her ENT follow up and everything looked great with her trach site. We are going to wait 6 months before we do any other type of surgery. Her trach hole (stoma) has completely closed up and we got the okay to take her swimming. Whoops we have already done that but we were very careful! We also went to OT and they are going to let us not use her thickener in her fluids. She did cough some when we tried it in the office but the therapist felt comfortable with us trying it. After this appointment we went to St. Lukes NICU and were lucky to see two of our favorite nurses and a couple of the doctors. Everyone seemed pleased to see how good the girls are doing. We decided to make a fun day out of the day and went to Deanna Rose Farmstead and had a great time. I enjoyed my 3rd Mother's Day as a mother today at a family picnic in Emporia. The girls had a great time and Troy and I are exhausted after chasing them all day. These girls have no fear and climbed everything in site. I am feeling really really blessed to be a mother today. I know there are several women out there that would do anything to be a mother and my heart hurts for them today.

March of Dimes

2011-05-01T16:59:00.004-05:00

We walked with our miracles today and so far we have raised $905.00! We are so thankful for all the donations and we know they are going to a great cause. The weather was not the best but we still managed to have a great time. I included a picture of the girls holding a molded baby that was the exact size they were when they were born. The picture makes the baby not look as small as it was in real life. When I looked at the baby it still didn't seem like the girls were ever that small. Today really reminded me how blessed we are. I didn't like seeing all the "In memory" of posters or shirts. Rylee has two appointments at CMH on Friday. I am taking her to the OT clinic and they are going to see how she does drinking liquids without thickener and then we have a check up in the ENT clinic.

Happy Easter

2011-04-24T20:59:00.005-05:00

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.

The healing begins

2011-04-20T22:43:00.002-05:00

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.

Surgery week

2011-04-17T20:56:00.005-05:00

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.

Easter Pictures

2011-04-10T19:44:00.005-05:00

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 kari_webb@yahoo.com 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.

2 year adjusted birthday

2011-04-03T19:30:00.004-05:00

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 :)

Jordan's 2 year coming home anniversary

2011-03-27T20:40:00.003-05:00

Yesterday was Jordan's two year coming home anniversary. It doesn't seem like it has been that long since we brought this little girl home. She spent 96 days in the NICU and has had no major health problems since bringing her home. We do know that she has mild hearing loss in her right ear but won't be able to know the extent of the amount of loss until she is able to participate in a hearing test. Other than that and a few wheezing days here and there she is doing great. I like to sing "You are my sunshine" to her and she has started singing it when I pick her up now. It just melts my heart every time I hear her say it. I took both girls to the doctor's office on Friday for Rylee's last synagis vaccination and all went well. They both did very good while waiting for the nurse to call us back. I wouldn't let them off my lap and they couldn't understand why I wouldn't let them down to play. Rylee didn't enjoy her shots and neither did I. I am so glad these shots are over with. Rylee has an appointment with ENT on Friday at CMH and I think the doctor is going to scope her vocal cord area in the office and to make sure she is ready for her surgery. She is still pretty quiet and they want to make sure her vocal cords are moving correctly. She will have her airway surgery sometime in April to close up her stoma site. We will have to stay the night in the hospital so not looking forward to that part of the surgery. We will also go to her pre-op appointment to make sure she is good to go for her surgery. The picture with the three girls is from this weekend. We celebrated Addisyn's third birthday and Saturday and had a great time. She is only 9 months older than the girls and probably a foot taller! lol I included some pictures from the day we brought Jordan home.

27 Months

2011-03-20T20:29:00.004-05:00

Our girls are 27 months today. We will be celebrating their two year adjusted birthday soon. Not a lot going on with us these days. We took the girls to a 60th birthday party today and the girls had a great time. They were pretty shy but opened up after awhile and put on quite the show. I think Rylee has her appointment on Friday for her last synagis vaccination and I will be so glad to say good bye to these shots. They have been a part of our life for three years now and I am ready to be done with them. We are really ready to get the girls out of the house more but still need to be careful as RSV/colds and flu are still going around. Both girls are really starting to talk more and more each day. Jordan talks non stop and we are able to understand her pretty good. Rylee is still pretty quiet and it is a little harder understanding what she has to say. She likes to count a lot and is really trying to learn the abc's. Jordan still likes to identify colors and boss Rylee around. I think we her Ry Ry over a hundred times each day. Their new word of the week is basketball as it has been on at our house all weekend. They got into it last night and didn't enjoy the commercials. They would keep saying ba ket ball. I don't have a lot to share with you this week. Hope all is well with everyone and have a good week.

2 week post

2011-03-13T20:17:00.004-05:00

I didn't do a post with pictures last week as I put the March of Dimes information up so I will make up for it this week. I am not sure where to even start. I did end up taking Jordan to the doctor a couple weeks ago as she was wheezing pretty bad for 6 days. It ended up just being upper respiratory and she was given steroids. She sounded much better after a couple days. She has had a lot of upper respiratory trouble during the past few months so not sure what is causing her trouble. Jordan hasn't been eating very good lately so I weighed her tonight and she only weighed 22 pounds. Rylee has been eating much better and weighs about 25 pounds. I can tell a difference when I pick her up compared to Jordan. I called the ENT clinic and we are just waiting on an appointment for April and then she will have her surgery sometime in May. We enjoyed a day out of the house on Saturday. I had to be in Emporia, Ks as my state basketball team was being recognized at the state basketball tournament. We decided to leave the girls at my grandma's as we didn't want to expose them to too many germs. We went to the local zoo and had a great time. My mom, sister, and nephew joined us and it was so much fun watching the girls just run around. They loved being outside and seeing all the animals. Troy and I left them at my grandma's house and then went and had a great time seeing friends for a few hours. Troy is on spring break this week so he is running daddy day care for a few days. My mom is coming to watch the girls on Wednesday as he has an appointment and then nanny MiMi will be back on Thursday.

March of Dimes Walk

2011-03-06T19:51:00.002-06:00

No baby should have to be born this small.

It is that time again. We are going to be walking in the March of Dimes walk on 5/1/11. If anyone is interested in walking with us please let me or Troy know as soon as you can. The link to our site is to the right of this post or I posted the website below. We are so thankful for what the March of Dimes has done for our girls. There is not a day that goes by that I don't think how blessed we are that our girls survived their early delivery. Troy and I really don't like asking for money from people but want to do what we can for this great organization. We raised over a $1000 last year and didn't put much effort into it. We will be so glad that both of our girls get to actually walk this year with us.

http://www.marchforbabies.org/webbgirls

2/27/11

2011-02-27T20:06:00.005-06:00

Troy got the pleasure of taking Miss Rylee to the doctor on Wednesday to get her synagis vaccination. We will be so glad when she no longer needs to get these shots as it is no fun for anyone. She weighed in at 25 pounds with all of her clothes on so we are thinking she weighs about 24 1/2 pounds. She is out weighing Jordan by 1 1/2 pounds now. She is drinking the pediasure pretty good so that is helping with her weight gain. I think we might start giving Jordan some to help her gain some more weight. The doctor let Troy know that RSV is really bad right now so he was glad he got Rylee in for her vaccination. Jordan woke up Wednesday morning wheezing and the doctor just wants us giving her some breathing treatments for now. She is still wheezing pretty bad and gets pretty bad when she is active. Which is 99 % of the time now. She is our wild child for sure! She wasn't too happy when she had to stay home with the nanny and Ry got to go out with daddy. She was very grumpy all day and our nanny thought maybe something was wrong with her as she is normally very happy. She gave her some motrin and then all was well. We have threatened her a few times this weekend with drugs but so far she is doing much better. I took the girls out in the yucky weather on Saturday to get some pictures with a photographer that we have used a couple times. She gets clothes from etsy sellers and then takes pictures for their on-line sites. We get the pictures so it works out good for us. The girls did pretty good for the pictures. They still don't enjoy being photographed too much but getting better. Tiny K was here on Monday and they did the visit with our nanny and from what I heard they were very pleased with our girls. They are even doing some stuff ahead of their age. They can identify shapes, colors, and have been counting really good. Rylee can count to 13 but leaves out 12 most of the time. I am just so proud of them. Hopefully Jordan gets rid of her wheezing and we can say put for the week. Troy's basketball season ended on Saturday and he had another good season.

2 years and 2 months

2011-02-20T19:23:00.004-06:00

The girls and I have enjoyed some days out of the house this weekend. On Friday I took them to a friends so I could meet up with the March of Dimes rep from St.Lukes NICU. I am going to start volunteering for the NICU and I am very excited about giving back to the organization that has done so much for us. We stayed around the house on Saturday and then today we went to Burlington to get our hair done by Aunt Kim and Aunt Kayla. We ended up having Rylee's hair cut like a bob and it looks so cute. The girls have missed their naps both days and did wonderful. Tiny K will be here tomorrow and she will just meet with the girls and our nanny. We are so thankful that Tiny K comes to our house and offers all the support. My mom really noticed how well they are talking on Monday and could even understand what they were saying. When the girls do something I don't approve of I always say "why". The other day Rylee dumped her plate out and after I said Rylee, Jordan said "why". Rylee will get her synagis vaccination on Wednesday morning and of coarse I am not looking forward to that appointment. We got the bill from our insurance company this week and last month's bill was over $12,000 for her January shot. This was before it had been processed yet. It is just amazing that the company can charge that much for one injections. I am hoping she only has one more shot after this week. Please keep the Kansas Department of Corrections Parole staff in your thoughts as we are facing some major lay offs in the upcoming months. The word last week is that 1/3 of our parole staff for the state is being cut. This is going to be a disaster for our department. I am really hoping and praying that I don't lose my job or our office doesn't lose too many officers. I am the one that has the girls on my insurance as Troy's is way too expensive. It has been a very stressful time for me.

Happy Valentine's Day

2011-02-13T20:02:00.005-06:00

Troy and I just got home from a dinner and Costco date with another couple. We had a great time at the Cheesecake factory and were glad to get home to our little valentines. Thanks to our nanny we were able to get out of the house. They had their own little Valentine's Day party with balloons, bracelets, candy, pizza and a craft project. Not much going on with us these days. The girls got to spend some quality time with daddy on Wednesday due to another snow day. He has been pretty busy with basketball games so it was nice for him to get some one on one time. Grandma Bitler gets to spend the day with the girls tomorrow as our nanny will be spending time with her new niece. Jordan's new word of the week is heart and what perfect timing with it being Valentine's Day tomorrow. Our little sweethearts continue to melt our hearts everyday. I will post some pictures from their first Valentine's Day to see what a difference two years makes. Oh and on a good note Rylee is still doing very awesome with drinking her pediasure we have even been reducing her tube feeding at night. Go Rylee!

Cabin fever

2011-02-06T19:27:00.005-06:00

We are experiencing some major cabin fever here in our house. Our poor girls have only been out of the house two times during this past month. One of those times was to go to the doctor so I am sure they will not count that as a fun outing. We are still just too scared to take them out in public with all the illnesses going around. A friend of mine has a 24 week preemie that is a little over five months older than the girls and he is currently hospitalized with pneumonia right now. This is why we are really trying to be careful with our pride and joy. I actually got two days off work this week with the snow and Troy was off for three days. We had Tiny K here on Friday and she let me know that she could see huge improvements with understanding their words. She noticed that Jordan likes to talk about colors and Rylee likes her numbers. We will continue to receive services through Tiny K (infant and toddlers) until the girls are 3 and then we will transition to the school system. It is really nice having them come into our house and offer support. We have been a little concerned with Rylee's liquid intake as she seems to have slowed down with her drinking. She will only drink a few ounces a day so we are giving her water and pediasure through her g-tube. She still drinks pediasure rather than milk as she needs all the extra calories she can get. We went against the OT advice and quit putting thickener in her pediasure these past couple days and she did a lot better with it. Now we just need to hope and pray she isn't aspirating the liquid. She gets very upset when we break out the syringe and g-tube extension so I know she would rather drink her liquids. We are still enjoying our life without her trach and it is so much easier around our house. The trach life was not a pleasant experience for us to say the least. We still count our blessings everyday. And of course, also with this age comes the fighting and the boundary-testing, and the tantrums and the whining and the seemingly never-ending need to move and to be entertained. Those are the things that still make me feel exhausted after each and every day. But they are still not what I find truly difficult about our current life with Ry and J.

Maddie Turns 6

2011-01-30T19:44:00.004-06:00

Our boxer dog Maddie turned six years old yesterday. She is so good with the girls and they absolutely love her. She gets kisses from the girls all day and then they always make sure they give her a kiss before bed. I hope she sticks around for many more years. The girls haven't been out of the house since last Friday aside from our walk this weekend. When we were at the doctor's office the other day he said we still need to be extremely careful with them as the are still very fragile. He even thought we should keep them out of any type of playschool next year. It is really hard just keeping them in all the time but on the other hand it is nice because we don't have to chase them down everywhere. I would like to take them up to one of Troy's basketball games but we are going to just see how this cold and flu season goes. We have Tiny K here on Friday and other than that we are just going to try and stay warm.

2 year check up

2011-01-23T19:18:00.005-06:00

We took the girls in for their two year check up and they checked out just fine. They don't have to have another physical for six months. Rylee weighed in a little more than Jordan and this is the first time in their life that this has happened. Rylee was throwing a huge fit during the weigh in and when we tried measuring her so not sure how accurate the measurements were. Rylee weighed 23 pounds and on the 25 week adjusted scale she is in the 19% for weight. She was 31 1/2 inches long and that put her in the 16% for height. On the regular two year old scale her weight is in the 9% and her height is 4%. Jordan weighed 22 lb 13 oz and on the 25 week adjusted scale this puts her in the 13% and she was 31.3 inches long and that puts her in the 12% for height. On the regular two year old scale her weight is in the 5% and her height is in the 12%. Not too bad for being 1 pound at birth. We asked the doctor how important it is to get rid of Rylee's pacifier. He told us as long as she didn't have it when she turned 3 she would be fine. I tried to talk him into telling us to lose it now but he said to see what the dentist had to say. I am ready to take them away and daddy thinks she should still have it. We do try to only give it to her at night and during her naps but she always seems to get them out of her crib. Rylee got her synagis vaccinations and it was horrible as always. The minute we get into the room she starts to have some fits. I think she has realized what happens at the doctors office is not good. I am glad we only have three more months of shots. We are still working on new words with the girls and this week Rylee has learned how to count to five in Spanish. Jordan is still doing pretty well too but seems to have not been quite as talkative as she used to be. I didn't take too many pictures of the girls this week so I included some pictures of our first baby Miss Maddie. That is also a picture of Jordan trying to gtube feed herself with Rylee's extension set. She has always been infatuated with Rylee's gtube. Yes that is her with a swim diaper over her clothes, a picture in flip flops and her fleece outfit tied around her neck.

Snow

2011-01-16T19:50:00.006-06:00

The week started off to a rough start with all the snow. I ended up staying home on Monday as it was not a good idea for me to get out on the highway with all the snow. Troy had two snow days so he enjoyed his time at home. I ended up working on Friday so I had my mom come watch the girls. She started the day off right with some donut holes for the girls. The girls have been out in the snow a couple times this week and they think it is pretty neat. They are continuing to say new words everyday and it is so fun listening to them talk. Jordan's favorite word this week is gross. I think she got that from me. lol Every time I change her's or Rylee's diaper she gets right in there and says ewe gross. Rylee still loves to talk and amazes me everyday with the words she has learned. We have some alphabet flash cards that we have been working on and I bet she can say almost half the words in the deck. We can't really understand what she is saying but she really tries hard. We do get to laughing at her because she comes up with some interesting ways to say words. I can't help but make her say octopus several times before we move to the next card. We are taking both girls to the pediatrician on Friday for their 2 year check up and Rylee will get her 3rd synagis vaccination. I received a call from the pharmacy company that ships the synagis to the doctor's office and our insurance pays all but $1400.00 each month. I am starting to question if we made the right decision on her getting these shots each month. It has let us do a little more out of the house and not have to worry about her getting RSV.

2 year old pictures

2011-01-09T19:35:00.007-06:00

Just saying I have two year olds just doesn't seem possible. Here are the pictures we had taken on their birthday. We were very pleased with how they turned out and I am having trouble deciding which ones to order. Tiny K (infant and toddlers) was here on Thursday and all is still going great with the girls. Still just working on getting them to talk and trying to get them to say words that we can understand. They both say new words daily and they are starting to put two or more words together. Rylee is still pretty soft when she does talk and sometimes she will not be quiet. I think those 18 months of not being able to make any sounds has something to do with that. We took the girls to Emporia last night to celebrate my parents 41st wedding anniversary and had a great time. Rylee was her normal self and put on quite the show for everyone. She even said Hi to everyone that walked by our table. Happy Anniversary Mom and Dad!

Happy New Year

2011-01-02T18:50:00.006-06:00

I hope everyone had a safe and wonderful New Year. We took the girls over to some friends house for a few hours and they enjoyed running around. We had them home by 9:00 p.m. so not too late. New Years Day is still a day that brings back some horrible memories. That is the day Rylee got MRSA in the NICU and we were told she was not going to make it. We still count our blessings that she fought hard to survive. The first picture is of Rylee and we thought it was going to be her very last one and just look at her now! Wow! We had a pretty quiet week and the girls enjoyed playing with all their new toys. We have Tiny K here this week and other than that not much going on. The girls haven't been sleeping the greatest and I think it is because they both have 3 or 4 teeth coming in all at the same time. We brought Rylee to bed with us this morning at 5:00 a.m. and she just cuddled right up to me and went to sleep. I did enjoy having her in bed with me but I don't want to start any bad habits. We did get a king size bed so if we have to we can fit both girls in bed with us.

Merry Christmas everyone

2010-12-26T20:27:00.008-06:00

I don't even know where to start as we have had so much going on during this past week. The girls turned two on Monday and my sister Kayla and I took them to a lady's house to get their pictures taken. Jordan surprised us and was very good for the photo shoot. Rylee on the other hand was not so good. We then took them to Saint Luke's NICU and it was a very good feeling walking through those doors with two healthy babies. I walked that hallway to the NICU 96 days and walking down it again on Monday sure did bring back some horrible memories. Kayla and the girls helped me keep my emotions in check. We took the nurses and staff some cookies and we got to peek in on baby Olivia. I totally forgot how small a 3 pound baby really is. It was hard to believe the girls were still only half her size when they were born. She was absolutely beautiful. The girls got to look in at her so that was a neat experience. We got to see some of our favorite nurses and even the girls' Occupational Therapist. We had a short conversation and she asked me, "if I would have had a crystal ball during our NICU stay would it of made our life easier?" That would have been so true and I would not have stressed the entire time they were in the NICU. I never would have predicted the girls to be doing so well. They are amazing! We then went and bought some cupcakes and came home to a few presents. Rylee had to go in on Wednesday for her synagis vaccination and I decided to take Jordan in as I thought she has been having some labored breathing. I was a little worried that she might be developing some asthma. The doctor didn't think her symptoms were too concerning and sent us home with some antibiotic as she has double ear infection. I sure am glad I took her in when we did or we would have ended up in the doctor's office this weekend. Rylee suffered through her synagis vaccination and was only purple for a few minutes following the shots. Luckily I took Troy with me and he got to hold her down. We will do the girls' two year check ups next month. Troy and I enjoyed a day out on Thursday and celebrated our five year wedding anniversary. Troy surprised me with a very nice anniversary band. It was quite the surprise to say the lease. We went to Hoyt, Ks on Friday night to celebrate Christmas with my mom's side of the family and Santa came for a visit. I am pretty sure Jordan thinks Santa is following her and she did not enjoy him one bit. We went to Americus, Ks for Christmas Day for a low key Christmas dinner with my dad's side of the family. Christmas morning at our house was priceless. The girls were very excited to see all the presents under the tree. This age is so fun and I look forward to each year getting better and better. We went to LeRoy, Ks today to have Chrismas with my parents, sisters, nephews, and Aunt Peggy and Uncle Fred. We also celebrated the girls' birthday. It was a fabulous day with the family. The girls were very social all weekend and seemed to enjoy being around family. They have been on the road for three days and we still have one more gathering tomorrow with my two best friends and their families. We are going to Osage City, Ks to spend the day chasing our kids. Jill is in town from Colorado and I look forward to spending time with her. I have over 155 pictures on my camera from these past few days so I might not get all the favorites uploaded tonight. I will add a few more later this week. I hope everyone has a safe and happy New Year! New Years Day is not my favorite holiday after Rylee's near death experience in the NICU. Hopefully each year gets better and better. I am so incredibly thankful for all my family and friends that have made this Christmas so memorable.

Happy 2nd Birthday to my little miracles!

2010-12-19T20:37:00.006-06:00

I think I might have lots of tears tomorrow as my little babies are turning two! I feel like yesterday we were just bringing these girls home. We had a couple friends over tonight for pizza and cake and then Santa came to visit. It was so much fun watching the girls expressions when Santa walked in the door. I will forever have these memories in my mind. I took tomorrow off from work and I am going to go get the girls 2nd Birthday pictures taken and then we are going to the NICU to deliver some cookies. I am so excited because two of our special nurses are working and we will get to see them. We also get to check in on baby Olivia who is doing much better in the NICU.

These little girls have touched so many people in these last two years and have taught Troy and I more than we ever thought we'd learn. I never thought I'd lean so hard on hope, but I have and continue to do so. So with the passing of this last year, the girls have continued to develop more of their personalities. Rylee is kind, helpful, loving, outgoing and of course sassy. She wants to please you and be loved. Jordan is curious, loving, strong-willed, charismatic and of course stubborn. Rylee is the smallest fighter most of us will ever know. I've been looking back at the girl's photos and videos this past week, and am amazed at all the changes that have taken place. As a parent of micro preemies, one of my biggest life lessons have been to look back a few months, rather than weeks when reviewing changes in development or health. Now I can say "years" and feel so proud. We may have some tough challenges still ahead, but we enter into them with strength and so much pride. I've learned that things don't always turn out the way you thought they would, or the way you hoped they would, but you can't plan everything. I'd like to think that even through our story, we still find ourselves to feel beyond blessed. These little ladies are our loves!

Two years ago on December 20th, we welcomed these girls onto this earth with that classic new parent smile that is trying desperately to mask a great amount of fear. For all it took to get pregnant with these girls, they gave me an amazingly easy pregnancy. Now there early arrival on the other hand was not what I had planned for us. They have been the best babies a Mommy and Daddy could ask for. They are perfect still in my parental goggles. I was just thinking today how much joy they bring me. They bring endless smiles and my heart nearly bursts from my chest daily with pride and love when I watch them. Jordan, you take care of Rylee as her older sister, you see she has her blankie and pacifier for bed. You are her second Mommy. And though a time may come when she does not enjoy being mothered by you, I love watching you care for her so much. You are also a girl who knows what she wants. Rylee, you are my baby. You snuggle and you love in a way that isn't thought out at all. You are so kind. Your smile, laugh and everything about you is infectious. So you are big two year olds now! I hope this next year brings just as much love and happiness as the first two. And if it does, I can deal with your sass and tantrums. You little miracles are our lives. We love you. I love you!

Last week they weighed in 22 pounds 13 ounces and were 31 ½ inches long. It is amazing that they both weigh the exact same. They are wearing a size 4 diaper and pretty much all of their clothes are size 12 to 18 months. They are about the size of most one year olds. They are both wonderful sleepers. They go to sleep around 7:00 p.m. and wake up around 6:30 to 7:00 each morning. Rylee will get her 2nd Synagis vaccination of the season on Wednesday and we just got the bill in the mail from her 1st vaccination. These shots are $9305.05 each month. Ouch! I am very thankful for insurance! Tiny K was here this past week and I was once again reminded that are girls are doing an amazing job. Our big focus right now is working on their speech. They both probably say over 30 words and even though we don't always know what they are saying they are really trying to get new words out everyday.

Last week of having two one year olds

2010-12-12T18:39:00.002-06:00

I still can't believe the the girls will be two one week from tomorrow. We have had another week of more colds and viruses in our house. Rylee had a pretty bad week so I took her to the doctor on Thursday just to make sure her lungs sounded good and no possible ear infection. She has been really grumpy and that is unlike her so she had me worried. The doctor thought her lungs sounded fine and no ear infection. He was glad I brought her in and she is getting better everyday. I woke up yesterday with an awful sore throat and just felt bad. I am not sure what I have going on with me but it is not a pleasant feeling. We made the trip to the Bass Pro Shop yesterday to take the girls to see Santa. We didn't realize we would have to wait for over an hour to get our picture taken. By the time we got up to see Santa the girls were both pretty grumpy and wanted no part of sitting on his lap. We just did a family photo and called it good. My co-workers 27 1/2 week baby could use some extra prayers during these next few days as she is having some complications. She might have to have the PDA ligation that Jordan had done at 10 days old. I am hoping to go visit her and the baby once I start to feel better. c

Sickness

2010-12-05T18:38:00.003-06:00

We had a week of nothing but colds around our house. Jordan woke up wheezing really bad on Tuesday morning so we gave her a couple of Rylee's xopenex breathing treatments and it didn't seem to help her. By the time I got home she sounded horrible and was really working to breathe. We got to the doctor's office and the PA was very concerned at first and mentioned hospitalizing her but once she was able to hear some good breath sounds in her lower lobes she felt comfortable sending her home. They had us do another xopenex treatment at the offce and then prescribed her zithromax to try to keep her from getting pneumonia. By Wednesday she was still really bad so I scheduled another appointment at the doctor. By the time I got home she was sounding much better and I questioned whether I should take her in or not. I decided to be safe than sorry. We waited in the sick side of the waiting room and after 40 minutes I decided it wasn't worth the wait and cancelled our appointment. I couldn't take sitting there with sick kids and trying to control a 23 month old at the same time. Since then she has done better each day. Rylee has had a little more of a runny nose these last couple days but no fevers so that is good. I woke up on Saturday morning with the same symptoms and not enjoying being sick. I figured the girls are safe with me around as they are probably the ones that got me sick to begin with. We are thinking the girls 3 Thanksgiving gatherings probably didn't help keep them healthy. It is still really scary seeing them get sick and have to work so hard to breathe. I was able to put our Christmas tree up on Friday and so far no broken ornaments. I didn't put all the ornaments so hopefully we will still have some left after this holiday season. The girls can say HO HO HO when you ask them what Santa says. I can't wait to see their faces on Christmas morning. We have a closet full of gifts that I know they will love. I have a prayer request for everyone. Our receptionist at my office went into premature labor this past week and delivered a 27 1/2 week old baby girl last night. It brought back a lot of memories with my delivery. She started out at Shawnee Mission Medical center like I did and then ended up at St.Lukes on the plaza where I delivered the girls. She was able to get some steroids so that will help the baby tremendously. It is still really hard hearing about other mommy's having to go through the same thing we had to endure with our girls. After hearing about other preemies it really reminds me how blessed we really are to have our girls with us.

Happy Thanksgiving

2010-11-28T18:45:00.003-06:00

I hope everyone had a safe and wonderful Thanksgiving holiday. Troy and I were off on Wednesday so we took advantage of our nanny and went out on a date. Most of the date consisted of shopping for our little girls but it was still a great time. We took the girls to my aunt's house in Americus, Ks on Thursday and I am not sure if we will be invited back for Christmas dinner! Just kidding Aunt Kathy I know you will let us back into your home with double trouble. I had some friends come visit for the weekend so Troy took the girls on a 2 1/2 hour road trip to his family Thanksgiving. I think all went well until he got a $145.00 speeding ticket on the way home. I think he was in a hurry to get the girls home to their mommy. It did feel very weird not having them with me all day. Rylee woke up with a fever this morning and her lungs have a lot of secretions in them. She still doesn't do a very good job a coughing up the phlegm so we are working on that. I gave her some tylenol and motrin a couple times today and her fever hasn't been back. I also gave her some mucinex type stuff that she had with her trach to loosen up the secretions and that seems to help. My mom is watching both girls tomorrow as our nanny is off so lets pray Rylee stays well. I have a feeling that it might be here aspirating some of her foods or liquids. I have been giving her a few drinks here and there and not sure if she can handle it quite yet.

23 Months

2010-11-21T19:14:00.005-06:00

Our little girls turned 23 months yesterday and have been with us for 701 days. What a journey it has been. I took Rylee to CMH on Monday for her OT and nutrition appointment and everything went well. Rylee ate some snacks while we were there and even took a few drinks. We were given the okay to keep her home over the flu and cold season as she will be going to her pediatrician every 28 to 30 days. I will just keep the nutritionist updated with her weight gain. The nutritionist was amazed at how much Rylee has grown in the past six weeks and is gaining weight like she should. We are now only giving her 4 ounces of her pediasure and all her daily water through her tube and hoping she will start drinking more of her liquids. We can still give her more pediasure if we feel she didn't eat well during the day. It is really nice knowing she is doing most of her eating all on her own. I almost had a panic attack while we were in our appointment as they called a Code Blue alarm over the intercom. This brought back some bad memories that I would love to forget. I was so worried about the child as it was right next door to where we were. Troy came home Thursday afternoon with a sore throat and wasn't feeling well so he was confined to the bedroom and only let out with a mask. The girls thought it was quite weird and didn't know what to think. I need to get some adult mask in our house as all we have are pediatric Mickey Mouse ones and they were a little small for Troy. He started feeling better Saturday and we are hoping and praying our little girls don't get sick. We had Thanksgiving lunch today with the Phillips side and it was a great day. Rylee walked up to all the kids and waved Hi to all of them. It was really really cute and I can't wait to see her be able to play with other kids once cold and flu season is over with. Jordan is still pretty shy out in public but seems to be warming up more and more. We were scheduled for Rylee's synagis vaccination on Wednesday and minutes before walking out the door I called to make sure they had received it in our doctor's office and we were informed that it was not even shipped out yet. Needless to say I was not a very happy mommy. They got the paperwork straightened out and Rylee was able to get this vaccination on Friday. It was not too fun seeing her get these shots and the nurse hated it even more. The nurse and doctor were both very amazed at how far Rylee has come in just a short time. The doctor was not real comfortable with us taking Rylee to a huge family gathering but I just couldn't bear to keep her home. It is so nice just being able to leave our house without all the medical equipment in tow.

Fall 2010 Pictures

2010-11-14T18:59:00.004-06:00

Here are some of the pictures we had taken a few weeks ago in Shawnee Mission Park. We have had a great week at home with the girls. I am taking Rylee to CMH tomorrow to meet with OT so they can see how she is doing on her feedings and they will weigh her and if she has gained weight we might get a few weeks off from having to go to CMH. Rylee is scheduled for her synagis vaccination on Wednesday and I am not looking forward to taking her to the doctor for this. I almost backed out of taking her as I don't want to put her through these shots but Troy quickly reminded me how important it is that she get any help she can. We will hopefully enjoy the holidays with friends and family a little more knowing that she has a better chance to fight off RSV with these vaccinations. She will have to go to the doctor every 28 to 30 days until this Spring. She is already starting to throw a fit when we walk into doctors offices so I am sure this won't help her any. Jordan is still just Jordan. We had a back step with her bottles and were giving her one to two bottles a day depending on how much milk she drank each day. She is on day two of no bottle and she had a major temper tantrum on the kitchen floor right before bed. It really broke my heart seeing her so mad. She will still only drink about 4 to 6 oz a day of milk so hopefully she will start drinking more soon or we may have to see what the doctor has to say.