BUSY BUSY BUSY!!!

Many of you know that I have started a new journey with Kyst By Everlee. Please take a look at the site if you have the time....www.kystbyeverlee.com. I am so excited to have had the chance to to this , it allows me to do all the things I love and most importantly it allows be to give to the spina bifida community, both in awareness and donations. Spread the word!!!

Our Update with Everlee is what I expected!!!! She is a ROCKSTAR! I have said it all along. She is working her butt off during therapy, which she has 5 times a week. She is rolling over and just recently started sitting by herself...I plan on putting video up here as soon as I know how!!!! Her Ortho is really impressed with her progress and still sees no need for bracing of any kind. The fact that she is going to walk it so amazing but if she can do it with no assistance, I will just be floored!:) We continue to work with her on the urology side, we continue to catherize her and we recently changed up her meds which should help avoid any bladder and/or kidney damage. That is one thing that is always on my mind, well that and the Shunt. Which reminds me....Sammy the Shunt has been working for 4 months now...isn't that just awesome??? We think so. Everlee does had an appointment with an opthamologist to check on one of her eyes that seems to be turned inward...we will have to wait to her about that. She is turning into a bit of a little piggy!!!! Almost 18lbs, wow! But we worked hard for those lbs:).

As usual, I hope you all are doing well....next time I will have video and pics for you. Hope you enjoyed your labor day!

A quick hello!

Hope everyone is doing well. We are!!! Scott is sadley in DC but we are joining him this weekend!!! yea!!! We have been so lucky to have him staying home a lot more this year, it has been so good for our family. Although now his leaving is a lot harder, especially for our Aubree. She tells me everday that she is ready to pick him up at the airport! My little girl is turning into a total "Daddy's Girl". She is also turning into a great little helper. I have lately tried to avoid taking her to a lot of Everlee's appointments but today she was a big help. We had two therapy appointments today and I was so happy to see how good Aubree was. It is pretty rough for a 3yo to sit in a room filled with toys and stay off them but she did. All she wanted to do was help with Everlee. It was precious. Everlee is doing great also. We continue with therapy and we have few key appointments coming up. I will update you with her progress after those appointments.

Our Everlee is a such a big girl!

I finally have access to a computer again, ugh!

Our little nugget is not so little these days. 15lbs and 8oz. and 26 inches long at 5 1/2 months!!!!
I am so proud of my chunky monkey. We have been keeping busy with doctor appointments as usual but everything has been pretty good. The best was our last appointment with the orthopaedic surgeon, he says she is using all of her muscles and that therapy will be the best thing for her. He expects her to be a walker!!!! I already figured that but it is so nice to hear it come from a professional!:) We have hired a private physical therapist in addition to what we are doing with CCS (the state program). She will now have three hours of physical therapy, two hours of occupational therapy and one hour of developemental therapy on a weekly basis. The first year is the most crucial from what I have been told so we are trying everything. Everlee is now rolling over and can hold herself for sometime in the sitting position, all of this is just awesome!!!! She is smiling like crazy and just recently started giggling. She is an awesome sleeper, THANK YOU!!!!! She does seem to have some lack of strength in her arms which might be caused by her Arnold Chiari Malformation, this has also given her a little trouble with gagging. These are all things we can work thru and she will get stronger. Her biggest problems that she will have to face are with the lack of bladder and bowel control. We met with her Gastroenterologist (I know another "ology") and he seems to think that things aren't quite working down there so we will start with testing and figure out the best solution for her. She is still being tested for various blood disorders because of her anemia, not quite sure what caused her to need a blood transfusion yet but we will get that figured out.
Our little girls are both growing way too fast! Aubree is just getting funnier each day and she knows it. Everlee already idolizes her big sis, I just love it. Aubree will get started with preschool in the fall. Oh boy!!! I will keep you updated on everything here. Thank you as always to everyone that has given us so much support thru all of this. We love you all.

Oh yea...notice the ads below and please click on them to check them out....we get get paid a little something and every bit helps these days!!!! :) Luv ya!!!!

Home Again and LUVIN' it!!!!

So here I am sitting on MY couch in MY family room, drinking MY glass of wine! Yea, we are home and I am in MY home with MY whole family!!!:) Okay did I get the point across??? Well, here we go again, Everlee was back to her old tricks- I think she is trying to get her frequent flyer card filled. Luckily my sister gave you all an update already but I here I am to give you bit more info.
It was day 17 since she had been out of the hospital for her second "vacation"and I started to see a bit of fussiness unlike your typical "baby stuff". So we called Dr. Loudon, her neurosurgeon, and they had us come that thursday. I knew where we were headed so I stopped feeding her at 7am in case she would need to go into surgey that day. Sure enough we saw Dr. Loudon, he tapped her shunt to have her CSF tested. No matter what the test results were he knew the shunt was not "tapping" properly so we would be going back into surgery for surgery #7. We dropped Aubree off with off with my mom (while rescheduling her birthday party) and headed back to CHOC. As most of these hospital experiences are, everything went SO fast. When we got back to CHOC we were admitted and went directly to SHORT STAY (basically this is where you go when you are headed to surgery). We were waiting for surgery but got pushed back because of an emergency, that both Dr. Loudon and his partner Dr. Mahonen would have to part of. Things got a little stressful because Everlee hadn't eaten in HOURS, how do you tell your baby that they can't eat? But then I saw the family of our docs emergency praying in the waiting room and realized we could handle our"stress". Then Myrlee, Dr. Loudon's PA, gave us some news we weren't expecting. Everlee's white blood count was in the thousands, so they feared infection. At that point we found out that she would not be getting her shunt back, but instead she would get her new friend, the EVD (External Ventricular Drain). Oh wasn't that a blast!!! Scott liked to describe it as the beer bong that was attached to our daughters head. Yea, how WT do we sound????:) Anyway, this drain had to remain level at all times to keep the proper level of CSF in her brain. We spent a week with this contraption and antibiotics to kill off her infection.
Day 7 in the hospital she was able to go back in for her new shunt, I never thought I would miss her shunt....but boy did I! Surgery went okay, there was some issue about her ventricules being too small because an employee of the hosptial didn't close off her EVD during transport, you can imagine I was not the nicest of mommies when this was discovered, but Dr. Loudon did what he does best and gave Everlee her new little accessory!:)
I didn't know what it was right away but recovery wasn't easy for her this time around, that was hard to watch. Unfortunetly, it didn't get better right away. She had to be on morphine for the severe pain she was in. Then her fever started and they feared her infection had returned so they started her on two antibiotics. Then we had the morning I thought I might loose my baby girl. Everything seemed to just be "typical" of what to expect from everything I have learned. But when I looked at my pale baby girl with no reaction to my voice and her eyes that kept rolling back in head, I thought for a moment that we weren't going to get her back. I fear everyday since that I will see her like that again. Luckily this state didn't last long, they discovered her hemoglobin count was way too low and she was given a blood transfusion. I swear to you, I watched my littled girl come back to life, it was amazing. So to all of you that don't, DONTATE BLOOD!!! Of course, we are now referred to a hemotologist because there was no reason for the actual blood loss and then referred to a GI Specialist because of some trace blood found in her stool. But who cares, we have a few more docs to see but my baby girl is now home and happy!
I do have to say this "trip" was a learning experience. During this time I had the pleasure of meeting a family that was Dr. Loudons earlier "emergency". This little boy was twelve years old and fighting complications due to his leukemia treatment. That is right, he wasn't even fighting his actually ailment yet, he first had to survive the multiple blood clots found his brain due to his treatment before her could even think about fighting his leukemia. This family has been in the hospital for the last 7 months. All 14 days we were there, that family was there just waiting for him to come out of his chemically induced coma. They were the most inspirational people I have ever met and everything that they had or have to go through put a lot of things in perspective for me. Each member of that family Mother, Father, 3 sons... told me that they truly believed it was their positive attitudes and their constant just"being there" that got their little guy through it all. I think of him daily I pray that he continues to fight.
I knew our daughter would be a fighter and that she would have some trials and speedbumps to overcome....... but we are so blessed and lucky to have what we have. Like I have said so many time before, Everlee Ann is a ROCKSTAR!!! Of course so is her sister, Aubree has been so good about putting off her bday party- that is such a big deal for a three year old. Of course we will make it up to her but just having her sister home makes up for all of us!!!!!
Love you all and thanks again for the support!!!!

Almost 2 weeks...whew!

 

Here I am (Kris) again blogging for Karlee; she is having difficulty with her computer for some unknown reason.  

Karlee has been by her daughter's side in the hospital for almost 2 weeks now!  Everlee went in due to an infection.  She seemed to be in the clear and was scheduled to come home last Saturday.  I guess Everlee must really love being in the hospital, because that darn infection came right back.

This misfortune doesn't seem to bring the Leyva family down though; they are warriors!  Karlee & Scott always have positive attitudes and take these moments in stride.  Everlee has been the "Warrior Princess" fighting each  battle that reaches her.  Aubree has been remarkably good without having her full-time mommy, daddy, and sissy with her.  Everyone has been taking turns caring for Aubree...I'm sure she will be spoiled with love from mommy, daddy, and Everlee soon!  Daddy bought her a turtle to keep her company...Kruiz really loves it too (thanks Scott)!

Everlee has had now 8 brain surgeries and continues to strive.  A new challenge has been revealed; severe enemia.  The Dr. was please to announce that it was not due to internal bleeding- meaning it's not his doing but now she has another medical issue and needs to see a hematologist.  Just one more battle for this family of warriors to challenge!

Karlee, Scott, Everlee & Aubree are so thankful to everyone for your support!  Please keep them in your prayers!

Our New Baby!

As many of you know little Everlee has been keeping us very busy. But it has been worth it when I look at the baby she has become in the last week. With all of the fun appointments with her specialists and therapists she also ended up in the hospital for week with two more shunt revisions. During this time we also found out about her neurogenic bladder and that we would have to start cathing her to protect her kidneys. Not what we expected but we are learning that this is just our new way of life. The most amazing part is to see what a happy baby she is. I thought we had a bit of a fuss butt, which I felt she was entitled to be, but I was so wrong. Now that we have a properly working shunt we have ourselves a happy and content angel. It is so nice to see her so content and comfortable. She now is connecting with her eyes, giving us a social smile and she is recognizing my voice. Developmentally she is right on which is such a gift. I really can't express how happy were are, these little milestones that she hits keep the marathon weeks of appointments so worth it. I think the strongest of us all has been big sister, Aubree. She has been so good with all the appointments and the hospital visits. I can't believe the patience and maturity she has shown, such a big girl! I will try to be better with the updates, as always thank you for your support and keep please keep our little ones in your prayers.

One Month Old!!!

Well, having little Everlee home has been well....like having any other newborn, our newborn just has a crazy social calendar! This has been our first week that not been flooded with doctor appointments and then we start again next week. She is growing so fast, her last peditrician appointment she had gone from 6'5 to 7'6 lbs in a week! I am guessing she will be hitting 8 lbs in no time. She is starting to make eye contact and is practicing her smile....and yes- she has a dimple! OHHHH....so cute.
As far as all of the medical stuff....well, things seem to be doing pretty good. We meet with her urologist on Monday and hopefully will find out more on the extent of the nerve damage controlling her bladder & bowel function. Crossing our fingers there, she could really use a little relief when it comes to poopy diapers...15 a day it not so fun!:) We will also be having our first Spina Bifida Clinic next Thursday. The clinic is where she meets with all of her specialists, Neuro, Ortho, Uro, Cardio....are there anymore o's???? I am looking forward to meeting with the orthopedic surgeon, hopefully we can get a better idea of the nerve damage in her little(okay not so little) feet. Her feet right now are still aiming towards her shins she seems to have trouble pushing them downwards, although most of the docs seem to think she has no feeling in the bottom of her feet- I am still hopeful. She seems to respond when I tickle them- I think she is just moody!:)
So that is the lowdown so far. Our little eater continues to amaze us daily- she is so much more than I could have imagined and has already added so much to our family. She is a little fighter and I can tell is not going to stand by and let anyone give her limitations. We thank you all for your support, I know I am repeated myself but really it has meant SO much to us. We really could not have survived this time in our lives without all the support & love of our family & friends. We are truly blessed.

We are home and so happy!

Well, today is day two at home and so far we could not be happier. Everlee is trying to get used to being somewhere other than her hospital bed and Aubree is trying to get used to having someone other than herself in my arms. That will be a work in progress. Thank you again for everyones support during this time- the response we have recieved from everyone was just amazing. Thank you for keeping our family in your thoughts & prayers.

I have a lot more pictures to upload but here are few that Auntie Nicole was able to get over the last week.

Thanks again for all of your love & support!

Everlee Ann Leyva

6lb 3oz 19in Born 2.2.09

We hit a speed bump...

Our little Leyva is not coming home today. We were on our way our the door when we asked the neurosurgeon to check her over one more time because her fontanelle was looked a little swollen. Well...it was. Dr. Loudon was unable to draw anything from the shunt meaning it was no longer working. So here we are in the waiting room again. Little Everlee is undergoing her third surgery in her short little life and all she wants to do is eat. I have promised she can eat as long as she wants as soon as they will let her. She is such a strong little lady but as always please keep praying for her. I will update you all as soon as I hear anything.

The Newest Info

So, we are going to the hospital tomorrow in hopes to take our baby girl home. That is right the docs say she is ready. I am so happy yet very nervous. Taking care of a newborn is one thing, but now to take home a baby that is on a wound regimen and knowing that we have to watch for her shunt, her back closure and kidneys- its a little overwhelming, but so worth it. I know, I talk in circles these days.
She is the most precious little angel and we have been so blessed to be have been given a gift like her. I am amazed daily at how lucky Scott & I are when I look at our daughters, I can already see some similiarities in them as well as many differences! Like Aubree when she was a baby, Everlee is an eater, one of the reasons she is coming home so soon. She loves nursing, so I see myself being "tied up" for a while. Everlee also got one of Aubree's dimples!!! I love it! She is very strong, but we already knew that, the nurses keep thinking she is going to walk herself out of NICU- and people thought walking might be an issue... I don't think so! She is very demanding when she doesn't get the attention she wants- I am thinking she got that from Scott, he, he!:) Aubree is so proud to be a big sister, she wants to wear her "I'm a Big Sister" shirt everday. I am so happy to have my family and soon we will all be at home together.

Another quick update on Everlee's progress. As I said before all surgeries went very well. Her Spine Closure surgery on Monday was a total success, although they did go back in on Friday to tighten up the stitches to ensure no spinal fluid leakage. Friday's Brain Shunt Surgery again was another huge success, the swelling in her ventricules went down immediatly- so that was awesome. She does have some reflux into her kidneys which we will have to monitor, she will remain on antibiotics for at least this next year to help avoid infection. Her feet look great no sign of clubbing, they are just really big!:)

Thanks to everyone for your constant support and words of encouragement, this has been such a crazy & exhausting week but it really went as well as it could, if not better. Thank you to all of our family & friends that have been there during this time. We have had so much help with watching Aubree and visitors at the hospital. thank you, thank you, thank you!!!!! We love you all and can't wait for you all to meet the newest addition to the Leyva Family.

We will keep you updated on her progress and as soon I get settled at home again I will get her pics posted.

Day 5- 2nd Surgery- Everlee is Strong!

Hi all- this is Kristi, Karlee's oldest sister; she wanted me to update you all. Karlee & Scott are busy with Everlee right now @ the hospital. Everlee had her 2nd surgery today. She is such a strong baby; she came out with flying colors. Only on day 5 now and she has lived through so much!
The opening in her back has been enclosed and is healing well, though infection is still a concern. Today she had to have her shunt placed. This little one will have some war wounds and many stories to tell I'm sure. Karlee & Scott said she handles surgery quite well, because she has had minimal assitance in pain relief and shows few signs of discomfort.
There are more challenges to come, but this gal proves she can handle anything, just like her mommy & daddy! Aubree seems to be handling everything well too; I know she's really excited that Everlee gave her a Dora doll!
Karlee & Scott are very thankful for all of your warm wishes, support, and love!

Things the way Everlee planned!!!!

So things haven't gone exactly as planned. Everlee decided to to come a bit earlier, that is right she is already here!!! Sunday night after an exciting Super Bowl Party at the Martins, my water broke and it was off to the hospital. Things ran really smooth but in the end Everlee had to be transported due to her unplanned arrival. We didn't get your typical arrival celebration, I still don't even know how long she is- but they are estmating she is just at 6lbs- which is awesome!!! So after her 2am arrival into the world Everlee took her first trip with her daddy and headed to CHOC hospital.

A lot has gone on these last 4 days, so I will give you all a quick update and hopefully be better about updating you in more detail these next few days.

Monday, after Everlee was transported to CHOC she underwent her first surgery for her back closure. This procedure went perfectly, we could have not asked for more success. The lesion was as low as they expected and it seemed relativley small, so they were able to close is with no problem. Scott & Grandma spent the day with her and she had quite a few visitors her first day. She was able to meet her sister, although I think Aubree asked to take a different baby home!:) What can do!!!! She is two!

Delay.......

Yes, that is right there has been a delay in our expected arrival date! Everlee is doing so well they want to keep her in a little longer. Awesome! Not so awesome on my hormones, rib pain, heartburn, headaches and any other issue I am complaining about these days!!!! But the good thing is our little one has had no additional swelling in her ventricles so she is camping out to get some meat on her. Surgery should be a little easier on her the older & bigger she is- so these are all amazing findings & decisions that have been made for her. Although I do have to say when you tell a pregnant women she is going to give birth- you are really risking personal injury when you change that date on her! Luckily I was told over the phone.:)
Thank you all for checking in with us- we are scrambling around trying to get things ready for her arrival and enjoying our time together with Aubree. The only thing Aubree is worried about these days is if Everlee is going to bring her a Dora Doll or not. We will keep you updated on any other changes but for now all we know is that little Everlee will be here no later than Friday, Feb 13th.

Everlee is a ROCKSTAR!!!!!

Sorry it has been awhile since I last updated everyone. The holidays & moving kicked my butt!!!! The update is that we have been doing the standard checking of our little girl and nothing has changed!!!! Nothing changing is basically our prayers answered. Her hydro has not increased at all, which from what my doctor expressed to me today- she is quite pleasantly surprised. She had expected we would have delivered this little munchkin by now because of the hydro. Now she can stay in and bake a little more getting her ready for her surgery. So what can I say, our little girl is a "Rockstar"!!!! It is a wonderment to me how a few months ago we went from doctors asking if we wanted to terminate this pregnancy to this. Thank you, GOD!!!!!

But trying not to get too ahead of ourselves, we still have a couple of weeks to wait and things can always change. Scott & I are confident and know the strength of this little girl is going to keep her healthy & strong. She will be delivered at the end of the month and have her back closure surgery within the first 24 hours, with the ways things are going we are hoping a brain shunt is not needed. So keep Everlee in your prayers, it is working!!!! Thank you to everyone for all of your support and kind words. We can't wait for the opportunity to introduce our baby girl to everyone of you.

HAPPY NEW YEAR!!!!!