First Thanksgiving

Rylee and her night nurse



Determined little girl
Our little Turkey





Rylee and her day nurse


Thanksgiving has come and gone, but I still would like to express once again our thanks to all of you who have supported us and loved us through the many challenges that we have gone through this year. Life has handed us many surprises, but the love and support of family and friends is what we have to be thankful for this year. You all have been blessings to our lives. We had a great Thanksgiving day with our family and the girls seemed to enjoy their day. They both started getting sick on Wednesday evening and we are now doctoring up our little girls. They both have some colds. Jordan has had a fever since yesterday afternoon, but after we give her Motrin or Tylenol she seems to get better. It was 102 this morning when I checked it. It did scare me for a bit as I don't want to see her sick. We are very lucky that this is the first cold that she has had since she has been home so I think we can handle it. Rylee hasn't had a fever yet, but she has some pretty nasty secretions. We are having to suction every few minutes and she now has blood coming out of her trach. I will call her doctor in the morning just to let them know what is going on with her. Tiny K was here on Monday afternoon and I think we heard the word amazing a thousand times! They are really happy that our girls have come so far since they first seen them in June. Jordan is pulling up to everything and has started cruising along furniture. She is even climbing if she can get her tiny legs up high enough. Rylee is rolling all over and we have to keep track of her now that she is mobile. I have a feeling that she will be crawling by her 1st birthday. We hope everyone had a great Thanksgiving and we look forward to seeing everyone over the upcoming holidays.

11 months

Another picture already??
Just chilling under the mirror.
11 month bear pics


Adorable
Gross! huh! Jordan sucking out Rylee's secretions.


Thankful for these miracles.

She is this happy all of the time.
Rylee spending more time on her belly! Yea!
I love to watch them play together.
Feeding twins is alot of work.
Ride em Rylee!
Sleeping beauty!


The girls turned 11 months on Friday. We took Rylee to her routine check up at CMH Special Care Clinic on Wednesday and everyone is pleased with all her progress. She weighed in at 16 lb 4 oz and was 26 inches long. She has now doubled her weight since she has been home. I met with the Clinical Nutrition Specialist and she was amazed with how well she is growing. She could hardly wait to show me the growth chart. Rylee will be on the regular growth chart next month! She did say she was a fatty right when she was released and now she is just where she needs to be. She let us increase her feedings 10 ml and we can only increase 5 ml every other week until we go back in January. They want us to start getting her feedings to go over 30 minutes instead of an hour. I already have her at 45 minutes and she is doing great so far. This will make life alot easier for her as she is hooked up to her feeding pump 6 hours out of the day. I was very excited to hear that Rylee can have some birthday cake. They want us to start giving her some meats along with her other food. She is still just taking a few bites of her baby food and loves her little snacks. She has done a better job with her sippy cup with yogurt juice this weekend. Daddy got her to take 3 oz today. I think he has a new job. I am very frustrated with all of her feeding issues so I might let him take over. We also got the okay to stop all of her medication for her Rickets. She was getting three different medications that we had to give her every three hours. It seems weird not giving her these meds as we have been doing it since she has been home. She is still getting her prilosec and we started her on a vitamin. We are also giving her some of Jordan's formula to get her back on a regular preemie formula instead of her predigested formula. I received a response back from Rylee's ENT doctor after she looked at Rylee's video with her PMV (speaking valve) on. She stated that if we are still hearing noise when she exhales then she still has some narrowing going on in her airway. We need to pray that this is not happening or this could mean she would need surgery to open her airway up. I took Jordan to Lawrence yesterday for her 2nd H1N1 vaccination and she barely let out a cry. She is now done with all of her flu shots. Jordan is really starting to pull herself up to everything and is everywhere. Daddy did a little child proofing today so it may help keep her in-line. I took Jordan to our family Thanksgiving with my mother's side today and she just sat back and took it all in. She was very quiet and didn't quite know what to think of everyone. I had sanitizer in hand and we stayed in the corner to avoid all the other kids. I did get a little nervous when I heard all the other kids coughing. I did start to question my decision to take her with me, but now that we are home I am glad I got to take her with me. This was the first time that several of my family members has gotten to see her. I was very sad that we couldn't take Rylee and I am very much looking forward to the day that we can go out as a family and not have to worry about germs, colds, and the flu. I did have her on my mind alot while we were there. Daddy and her had a great day at home together. On my drive to the dinner I did alot of thinking of how thankful I am that I have two very precious daughters. We are so blessed. I even had horrible thoughts of what it would be like if one of the girls hadn't made it. Some close friends of ours just found out they lost one of their identical twin girls this week so please keep them in your prayers. We hope everyone has a wonderful Thanksgiving.

New teeth for Rylee

Check out the teeth!!

Can you believe the Raiders lost? We need Chiefs shirts.
Okay I broke out another one of their Christmas toys!! They love it.
I still can't believe these girls are all mine.
Rylee and daddy standing.
This is how I keep track of this girl. Put her in a box.

Daddy went shopping for these outfits in the boys section so I added the bow to girly them up.


Here is our big baby.
Jordan standing like a big girl.
Our pride and joy!


I'm stuck!!

Sleeping beauty


I just noticed today that Rylee's two top teeth are coming in. She hasn't even been fussy so I don't think it is bothering her too much. She already has her bottom two teeth so she is ready to start chomping down on some real food. The teeth she has coming in are a little yellow. We are thinking it is either from all the antibiotics she received or from all the vomiting she did for those first few weeks. It could also be because she was not on full feeds for several months and required TPN as her only source of nutrition. She is doing really well with her puffs, yogurt melts, and some other type baby foods. She did really good with the yogurt juice this week and even took 4 oz total each day. This weekend she hasn't been too interested in. It could be because all she wants to do is chew on it because of her teeth. Jordan still doesn't have any teeth yet. She is eating 4 jars of baby food a day and eats her cereal in the morning. Tiny K (infant and toddlers) didn't make it out this week as one of the therapist was sick so they just stayed away from us. The girls didn't seem to catch the cold that both Troy and I had last week. We didn't get it too bad, but still had a little dry cough going on. Rylee has an appointment on Wednesday at Children's Mercy special care clinic just for a routine check up.

Shots Shots and more shots

Oh my gosh she is standing already!


Hi Rylee
Daddy and his girls dressed like boys



Jordan gets the sleeping pictures this week.







This is what Jordan thinks of her sippy cup.
Rylee loves to chew on it.

Sweet as can be.




The girl's adjusted age was 7 months on the 4th and they will be 11 months old on the 20th. I can't believe they are almost 11 months old. We have started the birthday party planning and it doesn't even seem real that they will be a year old very soon. I took Jordan for her 2nd seasonal flu shot on Tuesday and I had the PA take a look at her ears as she has not been sleeping too well. She thought everything looked fine with her ears, but she did hear some congestion in her lungs. I started to feel a little under the weather on Monday and thought maybe it was my allergies until my doctor told me on Wednesday that I probably had a virus going on. I had already exposed the girls so I have just been careful with trying not to spread anything to them. Rylee has had alot of secretions and we are having to suction alot more than normal so she probably has something going on. No fevers or anything so just keeping an eye on her. We had a nurse here last Friday that I suspected was sick so we might have picked up something from her. Needless to say she will not be returning back to our house. We are still doing Saturday nights without nursing and it is getting better each week. Troy still stays up until 2 or 3 am and then I take over from there. We finally got our Synagis (RSV) shots and so our nursing agency was here to give them their shots. It was not a pleasant experience for either girls. It took the two nurses to give them their shots as the dose was so big that they had to have one in each leg. It was pretty painful for the girls and myself. I am not looking forward to doing this each month. I was told that each shot is about $4,000, but insurance only pays $1,500. I am sure our insurance company is not liking our multi million dollar babies right now. We don't have to pay anything as we have met our deductible so we will have to pay towards these shots after the 1st of the year. I took Rylee up to our High School yesterday and she was able to get her 1st H1N1 vaccine and she will get another one in a month. Jordan will get her 2nd H1N1 vaccine on 11/21/09 and then we will be done with flu shots. The girls will get the Synagis shots monthly until March or April. We have Tiny K (infant and toddlers) here on Tuesday and I am excited to show what the girls are up to. Jordan is standing along the couch or the exersaucer if we help her get up. Rylee actually took some juice out of her sippy cup today and I was so excited. I made her stop, as I didn't have any thickner in it and didn't want her to aspirate. I am going to try giving her some of the liquid yogurt and see if that works. I have Wednsday off for the holiday so Troy is taking the day off so we can actually go out just the two of us and do something. We can't do anything together as we can't leave Rylee with anyone other than a nurse and we are very limited on our nursing hours. I am looking forward to getting out and doing something. We may do a little Christmas and Birthday shopping for our little laddies. Have a good week.

Happy Halloween

Two peas in a pod
A very sweet hooter girl!












Rylee already posing for the camera!
A chunky hooter girl!



Thanks for the Mickey Mouse's DeVoe family!

Already reading. Maybe upside down.
The girls are really starting to interact with Maddie.


We have had a great day dressing the girls in their Halloween costumes and taking lots of pictures. We will be staying in this year and hopefully we can take them out to show them off next year. I hope you enjoy the pictures. I picked out the two peas in a pod outfits and daddy made the inappropriate outfits. When I was pregnant with the girls I thought of the two peas in a pod and thought we could take them to a local pumpkin patch for pictures. Since we are unable to take the girls anywhere I thought we would have our fun at home. Jordan was pretty tired during the photo shoot and we didn't get as many good ones of her. She is wore out and sound asleep now. We had a great week with the girls. Tiny K was here on Monday and they were very impressed with both girls. She was glad to see Rylee sitting up so well and loved seeing her attempting to roll over. Rylee mastered rolling over on Thursday night so we were happy about that. Tiny K is going to bring the speech therapist with her in a couple weeks to see what she knows about the passy muir valve that Rylee is wearing. She is doing great with it and is up to 45 minutes 3 times a day. I am a little bit worried because we can hear every breath when she has it on and it reminds me of her stridor that she had prior to the trach. I e-mailed her ENT doctor a video of her to see what her thoughts are on it. Jordan will get her 2nd seasonal flu vaccine on Tuesday and hopefully I can get Rylee in someplace for her 1st H1N1 vaccine this week. We are still waiting on their synagis (RSV) vaccines to get to our house. This has me a little stressed as I called the pharmacy that is handling the vaccines and they have no record of the girls being eligible for the shots. I did verify with our insurance company that both girls are approved and we just need more paperwork sent out. These shots are really expensive and so it is a long process to get it going.


Jordan is cracking herself up over daddy and Maddie playing.

10 month bear pics

Best Friends





Daddy's little Raider fans

Yes, she is licking the bulldog!
The girls gearing up for Halloween.
Sleeping picture #1


Sleeping picture #2
10 month bear pictures


The girls have anew friend and her name is Sophie



Sleeping picture #3

Rylee's voice

Enjoy hearing music to our ears!! Poor Rylee fell and we had to quit the filming.