Conjoined Twins Update
This blog is the thoughts, feelings and emotions of Stevie Stewart, the mother of what is believed to be the first ever set of Native American conjoined twins.
Preslee and Kylee Wells were separated at The Children's Hosptial at OU Medical Center in Oklahoma City on January 19, 2009.
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May 27, 2009
More wonderful news! Miss Kylee Hope has been on a regular nasal canula for over a week now! After a refresher course in CPR (just to be safe), I will get to take her outside! OOOO and on top of that, she is trying to talk! I heard her talk last night for the first time in person (she talked to me on the phone the night before) and she can definitely say "hi". And when I was on the phone with her the night before, she said "momma". I promise! When I was with her and she was talking, I cried. For a good 10 minutes. I have waited for 7 months to hear that little voice and it was beautiful. I couldn't help it. Just another reason to be so appreciative of how I have been blessed.
Preslee is trying very hard to talk, right now it's just little noises but that's fine. She is still on vapotherm. The doctor said it's just taking her a little longer for her lungs to heal. It's a long, slow road but we are getting there. I'm so excited about Kylee. I'm pretty sure that when she gets to go outside, she will have no expression on her face, just a blank stare. She hides her emotions very well, thanks to daddy. But I'm sure she will love it. I'm going to take her out in the hallways at first because no one wants to get her over stimulated and stressed out. And I'm sure after the first trip down the hallway, she will be bored. LOL.
The girls are getting so big now. Preslee weighs 16 lbs 5 ozs. and I'm not sure on the exact weight of Kylee. When I think of how far they have come it makes me want to cry. Everyday I think of how blessed Kyle and I have been. Someone is looking out for our babies. My cousin just recently had a baby, 7 lbs. I couldn't believe how little she was but once I started thinking about it, the girls together didn't weigh much more. I can't imagine how tiny they would have been had they been born separate. Looking at them now though, you wouldn't know they were premies. Their scars healed up wonderfully! They are pretty big, but nothing to what they were immediately after surgery.
Hhhmmmm..... 5 more months until Kylee and Preslee turn a year old, if you can believe that! I know I can't. Well I know I haven't blogged much since the move, but I promise to everyone keeping up with our babies, that I will continue to keep you updated on the progress of Oklahoma's Twins.
May 18, 2009
Wow! I didn't realize how long it had been since I had written a blog! So much has been going on that I guess I just put the blog on the back burner.
Well, the girls are doing wonderful! I actually got a call today from my social worker letting me know that the girls got to get up and get in their strollers and sit really close to each other and that they really enjoyed it. They haven't got to see each other face to face for about 3 weeks now so I asked if there was a way to make this happen and Bethany followed through with my request perfectly!
The girls are getting worked with every day. All of their therapy is being done at bedside. They are working with the girls are eating from the spoon, sitting up and a few other things. I have noticed a difference in the way Kylee pays attention to stuff and how she follows things with her eyes now. She is doing much much better now with her repertory problems. The girls are STILL in love with their balloons.
I have never seen such happy babies. They love any and all attention they get. They both love to be held and love to flirt. Kylee has her "spot" already with her grandma and she loves it when grandma holds her. It's so funny when I'm with the girls and I call Kyle. I will put the phone up to their ear and when he starts talking to him their little legs start kicking and their eyes get big.
Preslee will just sit there and cheese when she is on the phone. She likes to talk on the phone regardless of who is on the other side. All in all, everything is going good.
The girls are getting so big. I keep waiting for one of them to just start talking. They try so hard to laugh out loud and they make such cute noises. I still don't know when they will be home or have any kind of timeline on when they will be ready to come home. But I can't wait!!
April 29, 2009
Well, the girls are getting settled in and adjusting well to their new home. I think Kylee is more excited about being some where new then Preslee is. But all in all, everything is going well. I think I am having a harder time adjusting to this new place then the girls.
After being around the staff at OU, it is very hard to get used to these new staff members at the Children's Center. Everyone there is wonderful and as the days go by, the girls will get to leave their room and go to different kinds of therapy. I can't wait until it's nice enough outside to get them outdoors. That will be so nice.
The transition from OU to the Children's Center went smoothly and neither one of the girls seemed to have difficulty with it. It is very different seeing them in a unit with different babies. Moving to Bethany was a very exciting time for Kyle and I and our families. We know that this move means that they are one step closer to coming home.
April 27, 2009
Well our stay at OU is now over. We got the girls moved to the Children's Center in Bethany. I'm so happy! I rode with Preslee over from OU to Bethany. She loved being outside. She was very excited about being outside. As far as the ambulance ride, not so much. She actually slept for most of it. I heard Kylee did very well on her ride over.
They got all settled in at Bethany and Kylee was awake most of the time. Preslee, sleeping. But they seemed to be adjusting well. It was a lot to take in one day so I'm sure it will take a little while longer for them to be completely settled in. They had so many new faces to look at! All the nurses seem wonderful. I don't know who is going to adjust to this new place quicker.
It's hard enough on me to adjust to a new place after 6 months, I can't imagine what it's like for the girls, seeing as how OU has been the only place they know. But at the Children's Center we will be able to take them outside and out of the room. And when it's safe enough, Kyle and I will actually be able to check them out and bring them home for a day or take them out shopping! A little girl can never have too much stuff! I bet they will enjoy shopping or getting to come home for the first time. I'm really excited about that part!
April 17, 2009
WE DID IT!! KYLE AND I GOT MARRIED LAST NIGHT!
It was perfect. We got married at the 9th floor chapel at the hospital. It was perfect because the girls got to be there. It couldn't have been any better.
We also got the girls baptized while they were there. We had their stroller decorated with pink flowers, they had on pink and green plaid dresses and absolutely loved being out of the room. We only had close family at the wedding and although it wouldn't have been my first choice for a wedding place, I wouldn't trade it for the world. It was sooo nice to have our babies there.
On our way to hot springs Arkansas right now, so this blog is coming from my cell phone. Thank you to Debbie Greenlee, our social worker, Allen Poston, hospital Public Relations and Kim Eason, hospital Physician Relations, they worked together and surprised Kyle and I with a room at the Skirven Hotel in Oklahoma City last night. It was gorgeous. I will get pictures up as soon as we get back!!
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April 16, 2009
Kylee loves banana baby food! They have a high chair in their room now that they sit in for meal time. Kylee looked like such a big girl sitting in the high chair. She ate so much of the banana baby food, she looked miserable. She just had this look on her face like she didn't even want to move. She does so good when it comes to eating.
Preslee on the other hand, not a big fan of bananas. She will eat the banana baby food only if there is rice cereal mixed in with it. I think she isn't quite sure what to do with actual food yet but she will get there.
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Preslee does love her little jumper though. It sits on the ground like a baby walker, but bounces. She absolutely loves that thing. I got to see her in it for the first time last night and she was adorable. Any time her foot would touch the ground she would push as hard as she could and she would bounce around and then look at me and smile. She was so proud of herself. She wore out quickly though and was ready to go back to bed.
Kylee is now off of all her IVs so she got to go visit sister last night. Preslee was much better about sharing her bed then Kylee is. Preslee was laying on her side and kept touching Kylee. Kylee got upset and Preslee would reach for her arm and just look at her like she was telling her everything was going to be ok.
I don't think either one of them wanted Kylee to leave the bed when she did. I personally think they probably could have slept together all night and had no problems. It was nice to see Preslee be so loving to her sister.
April 9, 2009
Well we are learning to eat from a spoon!! Kylee did so well for her first time! I was so proud of her. She ate from that spoon like it was nothing; she knew exactly what to do. It was so cute to see her with food on her face. When she was done eating she just had this look on her face like "that's all your gonna give me?". So cute. Preslee was so funny eating from the spoon. She would get the food in her mouth and then suck on her fingers to swallow the food. She pretty good at it, too. She was really tired though and couldn't stay awake to keep eating. They are getting so big.
I have had a lot of people ask me if I know when they are coming home yet and no I don't. It's still going to be a little while. There is talk about moving them to a different place so that they can get caught up developmental wise. This move could happen pretty soon. I am so excited. Not that I don't love the children's hospital, but it will be SO nice to get Kylee and Preslee out of there. I'm sure we will be making plenty of trips back up there to visit the nurses and other hospital staff that have become just like family. I will miss them when the girls leave but it will be so nice for them to get out of that room.
April 6, 2009
Wow, April already.
This weekend was really good for the girls. They had lots of visitors on Saturday. And yes, they are STILL playing with their balloons.
Their personality differences crack me up. Kylee loves to cuddle with her grandmas. Preslee would rather just sit up and look around so she doesn't miss anything. My mom and I were up there yesterday and she had Kylee all snuggled up and in her ‘spot" and I was holding Preslee. Kylee loves looking at Preslee, from a distance. When I put Preslee on my mom's lap with Kylee, all of a sudden Kylee was "tired" and pretended to go to sleep. The girls also got their first real baths, since being seperated, in a tub, this weekend. I wasn't there and didn't get any pictures but I am taking their bath tub up there to get some pictures later this week. I was told that Preslee loved it. She was so relaxed and kicked her little legs and splashed. Kylee wasn't sure what to think of it at first but once they started washing her hair, she was done for. Kylee is still amazing me, as I'm sure she will for the rest of her life, she is staying awake more and more and is really focusing on stuff and she looks better every day.
The wounds are completely healed on both girls! No more dressing for the wounds. The scars are, uh, OK. I guess I'm just use to seeing them, some might say they look pretty bad. They are pretty big, from under their neck to their belly buttons. You can see where the stitches were. It looks like they had open heart surgery. But to me, they look wonderful. We are getting ready to eat some rice cereal! Forget the bottles, were going straight to spoon feeding! Nurse Joann told me that she was going to call and see if she could get a high chair for them and might try to feed them by spoon once today. So exciting. They are getting so big. Kylee is currently weighing in at (get ready for this) 16 pounds and I don't know how many ounces. Preslee is weighing in at 14 pounds 3 ounces. Both girls are 24 inches long.
March 31, 2009
After taking a few steps backwards this weekend, we are moving forward again. This weekend (with all the crazy weather) Preslee took a few steps backward in her breathing. She was put back on the CPAP machine but I was told this morning she is back on vapotherm. Just a regular nose canula now that gives just a little more support then regular oxygen does.
I stopped at the gift shop in the hospital yesterday before going to see the girls. I bought them balloons. Who would have known that balloons would be so entertaining? I bought one ladybug balloon and a butterfly one. I gave the butterfly to Kylee and the ladybug to Preslee. The girls were absolutely mesmerized. I got some video of Preslee kicking her balloon and hitting it. She was all smiles with that balloon. I thought, ok she is not going to sleep as long as the balloon is in her crib. Kylee wasn't really interested in touching her balloon but she loved to stare at it. It must have been the colors but they couldn't take their eyes off of them. When I called to check on them last night the first thing their nurse told me was "they are still playing with the balloons". If I would have known they would like them so much, I would have bought them some a long time ago.
Kylee's attitude seems to be improving everyday, she is smiling a lot more and she is catching up with her sister. She really focuses on things now and loves to be talked to. Somehow, at only 5 months old, the girls absolutely love cell phones. If you put a cell up where they can see it, they will reach for it. They love talking to their daddy on the phone too!
All in all they are doing well. Getting bigger and bigger everyday and just to do a little bragging, they get cuter every day too!
March 27, 2009
| Preslee with her new dress |
Well more good news! Miss Kylee is now on regular oxygen! She never fails to amaze me. She went from being on the ventilator to regular oxygen in less then two weeks. True miracle baby. I went up to see them last night and got some wonderful pictures with them. They had the most adorable little pink and black dresses on. A little small, but they at least got to wear them once. I love the fact that they love to wear clothes because I would think that as long as they went without wearing clothes, they probably wouldn't like them. But they absolutely love being dressed. And, oh man, can you find some cute little girl clothes! I couldn't believe how happy Kylee was last night. She is usually the one that is mad and it's very hard to get a smile out of her.
We are continuing to improve everyday. Now that they are both on oxygen, we are just waiting for them to eat from bottles and then.....
IT'S TIME TO COME HOME!!!
I can't wait to hear the words "we're going to the village", which is a place in the hospital where families live with their babies in a home type setting for several days to learn to care for them at home. What I can't wait for even more then those words are "let's go home". I'm impatiently waiting for those wonderful words. Some days it seems like forever but then again other times, I can't believe they are already 5 months old. I would love to know where that time went.
March 23, 2009
We are getting closer and closer to coming home every day now. I don't remember the last time I got such good news. Everyday when I talk to a nurse it seems like nothing but improvements and I'm glad.
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| Stevie holding Kylee and Preslee together for the first time |
Yesterday I got to hold both girls at the same time since their surgery. They are MUCH bigger now then when I had to hold them together. Preslee, slept the whole time, Kylee was awake the whole time. Once Preslee was back in bed, I think Kylee enjoyed the one on one time with mommy. She seems to be doing better every day. I was up there for about 3 hours yesterday and she was awake when I got there and awake when I left. I even got her to smile for me a couple of times.
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| Preslee in her chest protector. |
The girls got fitted for the chest protectors earlier last week and got them on Friday. They don't seem to mind them at all. The chest protectors are a kind of hard foam on the insides and plastic on the outsides. They come in two pieces and Velcro together. Someone even put butterflies on them! Preslee's is purple and Kylee's is blue.
March 19, 2009
Well last night I figured out that Miss Preslee is going to be daddy's girl. Kyle and I went up last night along with the girls' great great aunt, and as soon as Preslee saw Kyle, she became fussy. And she continued to fuss and whine until Kyle held her. I got her out of her bed and handed her to her dad and as soon as she was in his arms, she smiled. It was cute.
Girls are currently weighing in at:
Preslee: 13 lbs. 5 oz.
Kylee: 13 lbs. 12 oz.
Preslee is slowing gaining on Kylee!
Thank you to everyone for the continued support and prayers. I love getting the comments
March 16, 2009
This weekend was a great weekend for the girls.Kylee came off the ventilator yesterday. After coming off the ventilator, and I mean just minutes after coming off, she was smiling. She was just so excited to finally have that tube out of her throat. Weird as this may sound; it was nice to be able to see her mouth, to actually see her smile. She loved being off the ventilator so much, that her CO2 level was 47! The NNP said she was so excited for Kylee and that she was going to make us a copy of that gas level for the baby book. Kylee just looked happy and it was like once they took that tube out, she could suddenly throw her arms around and kick like crazy. She was not about to go to sleep after that.
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Twins Together |
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Preslee Dressed |
Every day like this means we are one step closer to coming home!
Want to tell me your thoughts or just to say hello? Click here to send me a message. I'm really interested in hearing what y'all have to say!
March 10, 2009
Oh my! Last night was so much fun. Kylee and Preslee had some special visitors last night. Their Aunt Tiffanie and Uncle Neal came up to see them. Tiffanie and Neal are Kyle's sister and brother-in-law. This was the first time for Neal to see the girls.
But anyway, they were doing so good when we got up there last night. Everyone got to see both girls awake at the same time. Kylee, of course, didn't stay awake very long. Preslee on the other hand was awake the entire time. Aunt Tiffanie got to hold her and tried giving her a bottle. After that, I got Preslee up and nurse Carli helped us in getting Preslee over to Kylee's bed.
| Preslee giving Kylee a kiss |
I then tried to figure out how I could turn Preslee around to get a picture of her giving her sister a kiss. After some squirming, I got her turned around and the first time I missed the picture! But I got it the second time. During that second kiss, Kylee opened her eyes just barely, looked at her sister and went back to sleep. Silly girls.
March 9, 2009
I haven't blogged in a few days and so much has been going on!
Little Miss Preslee is now on regular oxygen! One step closer to coming home. We are still waiting on a few more things before she will be able to come home, but we're getting there. She is currently getting rice in her formula, in hopes that she will be more likely to take a bottle. She took about 5 ccs for me last night but has taken as much as 20 for the nurses.
Kylee is still on the ventilator. She is ready to come off though. While I was up there the other day, she was trying really hard to push that tube out of her throat with her tongue. She is waiting to have a test done to make sure there is no blockage in her airways before they will try to take her off the ventilator again. This test should hopefully be done tomorrow.
March 3, 2009
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| Our first family photograph |
Last night was so much fun! Kyle and I went up to see the girls after work. Kyle held Preslee for the first time. I think he had more fun then she did. She just kept looking at him and smiling and laughing. It was so cute. He really got a kick out of her and he can't wait to go back up and do it again.
I held Kylee last night even though she is still on the ventilator. Allen from the hospital was there to take pictures. It then dawned on me that these would be our first family pictures. And although they are not professional or the best pictures in the world, they are indeed our first family pictures. I got so excited when I realized that.
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| Kyle holding Preslee for the first time |
Preslee lit up the room last night. She just kept looking at Kyle and then at me and then at Kylee. And she would smile. Big beautiful smile. She laughed and smiled the whole time. It was so hard to leave when that time came. Kyle and I will be back up on Wednesday to do it all again. I don't know who is looking forward to it the most, the girls or us?
March 2, 2009
The interview with the Oklahoman yesterday went wonderfully. I still get nervous when doing stuff with the press (it's not easy) and I'm still not used to all the attention, but I completely understand why everyone is so interested in our story.
It's a long and rough road, but by taking it day by day we will get there. I love the story printed in the paper, again, it's something different and it's a little more personal. It was the first time we had invited any media into our home and I was a little nervous about that, I hadn't spent much time at home this week because I have been cheering hard for Kylee and Preslee's Uncle Hunter and the Calumet Chieftains at all the basketball games. (WE'RE GOING TO STATE!!!)
Now, as for the comments about our story posted on www.newsok.com, thank you for everyone who posted something positive and thank you for all the support and to those of you who defended not only me, but my family. The story was printed with the intentions of letting Oklahomans know how KYLEE AND PRESLEE are doing, not for people to start making assumptions on whether or not Kyle and I are good parents. No, we're not married. Not today, not tomorrow, but soon. May as a matter of fact. I just don't see how people who don't know Kyle or I or our family, can publicly state such harsh words, when in fact, they don't know us. I guess Kyle and I must have just been raised in a completely different day and age. We know that NO piece of paper can make us good parents, that's something that is done not out of the love for each other but out of love for Kylee and Preslee and that is all that matters. If Kylee and Preslee have TWO parents that love them with everything they have (and we do), what else matters? Just because I am in the public spotlight, does not mean I will not stand up for my family when criticized. I will not, not now or ever, stay quiet when it comes to defending myself, my future husband and father to my beautiful daughters or my family. My family is my entire world and I am PROUD of it and I will not stand by and just watch as people criticize mine and Kyle's parenting abilities.
Now, back to the important stuff... I talked to nurse Joann this morning on my way in to work. She said the girls were doing great. She said Miss Kylee was awake at the moment and just looking around. Kinda mad and ready to get that ventilator tube out of her throat. Kylee will be seen by an ear, nose and throat specialist to make sure that there is no blockage in her airways, because the staff at OU, just like everyone else, wants her to be off the ventilator for good this time. Preslee was asleep when I was on the phone with the nurse; she was up most of the night and just wouldn't go to sleep. Too many toys to play with and too many people to watch for Miss Preslee to go to sleep. So, they are having a wonderful day today and after work, their dad and I are going up to see them. Dad is going to hold Miss Preslee for the first time. He did a wonderful job of holding them before surgery so I know that holding just one of them will come natural to him and he will have no problems. Kylee and Preslee love it when their dad is around and he always seems to put a smile on their faces, even if it just by talking to them over the phone.
February 26, 2009
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I have been checking in with their nurse today and every time I call she has something new to tell me, good stuff. She was telling me they weaned Kylee's ventilator settings down, but she had to be sneaky about it while she was telling me. We didn't want Kylee to know that she was doing more work on her, it might upset her. The girls are so funny.
My aunt is up with the girls right now and she sent me a picture of Preslee in her big girl bed. The picture is adorable and put a huge smile on my face. Of course, I had to go show the picture off to everyone here at work and send it to all my friends. It's not the clearest of pictures, it's from a cell phone, but I love it!
February 25, 2009
So I just talked to the girls' nurse and she is working on getting Preslee's crib in the room and getting everything situated! Preslee is getting her big girl bed! She is going to look so tiny her crib. I can't wait to see her. The nurse said Kylee is finally asleep and that both girls have been awake for a good part of the day. That's so nice to hear. Kylee is still on the ventilator, but hey, she got some practice yesterday. Hopefully, next time they take her off, she will be off for good. They are having a wonderful day today.
Just want to give everyone a heads up... The Cheyenne-Arapaho Tribes of Oklahoma (my employer) along with OBI is going to host a blood drive for Kylee and Preslee on May 13, 2009. The lady in charge of this has been talking to me everyday and we are both really really excited about this. We want to have the biggest turn out that we can possibly get. We are still working on all the details. As this date gets closer we will be advertising it more and more.
I want to thank everyone again that has already donated or that has attempted to donate blood. Remember, we want the biggest turn out we have ever had for a blood drive, so we hope to see you there!
February 24, 2009
So after over a month of waiting, I got to hold Kylee today!! It was amazing. I didn't cry at first but as she started waking up and looking at me, I cried a few tears. It was so comforting to hold her. She came off the ventilator this
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Stevie Holds Kylee for the first time! |
All in all today has been a really good day for the girls.
February 23, 2009 Entry # 2
Well I just got off the phone with Joann, the girls' nurse, and she said the girls are having a wonderful day! Miss Preslee is being a complete flirt. I have been told by more then one nurse that every male that walks into the room is greeted by bright eyes and a smile from Miss Preslee.
Good news: Kylee is coming off the ventilator tomorrow!! Yay! Joann said Miss Kylee was awake for most of the day today and got to play with her toys and get a bath this morning.
Preslee got to sit in her swing today for about 2 hours and was awake the whole time. She has a little frog tapped to her swing and Joann said Preslee reached up and swatted at it and grinned from ear to ear!
So, if Kylee stays off the ventilator, the girls should hopefully be back in the same bed by the end of this week or this coming weekend! I can't wait to see what they do when they are back in the same bed together, it's going to be interesting to see if they love on each other or fight... or both! Hopefully they are over the stage of pulling each other's tubes out, but some how I doubt they are, that's too much fun... Gotta keep the nurses on their toes!
February 23, 2009
Friday was an amazing day for me. I took off work a little early to go spend some time with Kylee and Preslee before my brother's basketball game. (It's playoff time!) Anyway, I got to see Kylee REALLY awake for the first time since the surgery. I mean, both eyes wide open, looking right at me. I was so excited. I couldn't stop talking to her. She didn't stay awake for long but I didn't mind.
I got to feed Preslee another bottle. She took 10 ccs this time. She was totally pooped and was too tired to really eat out of the bottle.
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We went back up to the hospital yesterday (Sunday) and the girls were both just stretched out in their beds. I couldn't believe how big they looked. So I asked the nurse how long they were and how much they weighed.
Preslee: 22 1/2 in. long and 12 lbs. 7 oz.
Kylee: 22 1/4 in. long and a whopping 14 lbs. 1 oz.
Kylee still has some water weight and may lose some more weight, but I doubt it. She is eating enough that I don't think she is going to get any smaller. And that's ok, chubby babies are cute!
February 18, 2009
So, last night was wonderful for both the girls and I. The day before, the nurse gave Preslee her first bottle. She is currently eating 15 ccs with every feeding, she took 5 from the bottle! Yay! While I was with them last night, I wanted to try a bottle. She was too busy looking at new things to even think about a bottle. She only took 2, which to me, is better then nothing, it's a step forward in the healing process.
It was the funniest thing! The nurse was messing with Preslee, just trying to get some slobber out of her throat, and as she is doing this Preslee is coughing (without making a face). So as Preslee is coughing, across the room, Kylee starts. Now for them to do this type of thing when they were together, wasn't unusual, it was almost expected. I just had to laugh and thought "girls, you aren't together anymore".
I was holding Preslee after that and she was just so amused by everything that was going on. It was shift change and their primary night nurse came in. As soon as Preslee heard her voice, she started trying to look behind her and see her nurse. So I sat her up and turned her facing away from me so she could see her nurse. She was just so happy to be up and out of bed that she didn't care what she was looking at, it was all new to her. I kept trying to get her to look at me. Nope. She had a plain, boring, white seiling to look at.. After holding her, it was bath time!! She acted so mad that we were bothering her but as soon as I started washing her hair, she was done. She loves bath time.
I don't know how they do it, but their top eyelids on their right eyes are red, kind of like a bruise or scratch. I told them they can't blame each other anymore and I really can't figure out what happend. Another thing, they have matching bald spots on the right sides of their heads. Kylee's is from when she was on the ECMO machine, where Preslee's came from, I couldn't tell you.
I can't wait to hold Kylee and I'm hoping it wont be too much longer. I'll probably cry when I get to hold Kylee, she has had it rough since surgery and it's been so hard not to hold her and cuddle her when she really needed it.
The girls' conditions have been upgraded! Kylee is now serious and Preslee is fair.
February 17, 2009
Good morning everyone! This is my first time doing a blog. Allen from the hospital and I thought this would be something neat to do, something to give y'all a better insight to what is going on with Kylee and Preslee, something more personal then just medical terms.
First, Kyle and I and our families would like to thank all the surgeons, doctors, nurses and everyone else at OU for the wonderful care Kylee and Preslee are receiving. Thank you to everyone who has donated blood, care baskets and hand made quilts to the girls and anything else I might have forgotten. It's amazing to us how many people will tell us that they are praying for our family, some of these people we don't even know. It's very touching and we greatly appreciate it. Please keep them in your prayers; the journey is not over yet.
Ok, I am going to go back to Sunday, the 15th, the first time I got to hold Preslee since the surgery!
Preslee has been off the ventilator for about a week now, doing all the breathing on her own. She is on vapotherm, a nose cannula that pushes warm air into her nose and gives her some oxygen as well. She loves this machine, no tubes down her throat; you can actually hear her cough, sneeze and cry now. Wonderful sounds to hear. Her wound vacs also came off last week, she is healing up well. Now that all these tubes are gone, it's time for momma to hold her! I sat down in the chair and waited for the nurses to prepare all the wires and hand her to me. They gave me the whole bed, mattress and everything. There she was, sound asleep. She never woke up through them moving her around and handing her to me. I held her for about an hour and a half, I couldn't get enough of it. Precious little baby, sleeping away, not a care in the world, so comfortable. I loved it. It was so real. I kissed her little forehead I don't know how many times. I loved it so much that I was off work on Monday and when I went back to see them, I held her again. This time she was wide awake. It was just her, not the whole bed again. Big, beautiful, brown eyes looking up at me. Looking at the doctors and nurses and of course, the toys that were hanging from her bed. I asked the nurse to get her frog down and she did, Preslee looked at it for about a minute and looked at the rest of the toys in her bed. The nurse got those down, only for Preslee to look at those for about a minute and then she was done with them. Back to sleep it was.
Preslee is currently eating 12 ccs of formula with every feeding and Kylee is eating 10. Kylee is still on the ventilator but on very low settings. They are not in a big hurry for her to come off the ventilator. They don't want her working too hard, if she does, this could cause her pulmonary hypertension to come back and no one wants that. It's a blessing from above that this went away in the first place.
Part of the surgical team came in while I was with the girls yesterday. They came in to look at the wounds and change out some dressings. That's when they took Kylee's wound vacs off. Less tubes for her now too! While they were checking their wounds, they decided they would take some stitches out. Kylee was NOT having this. She attempted to kick him several times. I had to laugh and I thought to myself "so much for being the quiet one". Kylee had 5 stitches taken out and Preslee had 4. Preslee wanted to help him take her stitches out. The nurse informed him that she was good at taking things out, but only if they aren't supposed to come out. She was referring to earlier in the day, Preslee reached right up and grabbed the syringe on the end of the feeding tube and started to pull. Kylee does the same, but is very sneaky about it. On Sunday, she had an entire piece of dressing in her hand. We are told that she like to pick at her dressings and is very good and getting them off.
I talked to their primary nurse this morning, Joann, and she said they had a wonderful night and are off to a great start this morning. They are both only having just one or no residuals after their feedings now so they are digesting the formula better.





