Thursday, July 28, 2011

Update on today's cardiology vist

You can see her lips have turned a little bit more blue. They can get really purple these days :(

Well Ella's numbers have been great today for the most part so this is good! Although she had a hard time at the doctor, she was VERY brave! Unfortunately since she is really dehydrated (because with her ear infection she is not wanting to drink, I think it hurts her ear to swallow) at labs they stuck her and dug around for awhile only to get NOTHING! It took three of us to hold her down (she is insane strong) So I was NOT a happy momma! Thankfully the cardiologist said we could just try again next month and hopefully by that point she will be way over this ear infection and they can get a better draw. So as for the results of the echo here's where we are. He told us that her atrial septum that she had to have opened the moment she was born seems to have slightly narrowed. Originally it was 10mm and now it appears to be 8 1/2mm, what this may mean is that if this continues to narrow she will have to have MULTIPLE additional cath surgeries. He said this is... VERY RARE... I bet you didn't expect to hear that :p I actually laughed out loud when he said that, and before you think I am heartless you need to know that EVERYTHING about this child seems to be "rare"!!!! He said the bad thing about this is that if her atrial septum is closing off again it will always try to grow together which basically means about a surgery a year... forever.. blech :( At least it isn't open heart, but it is still dangerous since she has to be put on a ventilator and have a hospital stay etc. Just makes me feel sad for even yet more for her to jump. The good news is that she hasn't been "officially" diagnosed with this yet, so we will be praying HARD and hoping that you join us in asking the Lord to keep the hole OPEN! The cardiologist also explained that this could also be the ear infection making things worse. I asked him if this will happen every time she gets just a little sniffle and he said... maybe... Well that made me super sad and a bit scared too if I'm going to be completely honest. He told us that we needed to continue with our "semi seclusion"  especially through the upcoming flu season. He said most likely until after her last open heart surgery. Which honestly I am MORE then okay with, it is a sacrifice to not see family and friends as much as we would like, but she is MORE than WORTH IT! Especially since this little ear infection has caused to much pain and anxiety for her. We will still be having her big birthday bash, but we want to take this opportunity to remind everyone to be as healthy as possible that day! Also just a heads up NO one will be touching her that day except mommy and daddy. I'm sure you understand, and if you don't... try putting yourself in our shoes ;) We are however REALLY looking forward to celebrating with so many of you who are so VERY special to us! So for now we watch her pray for her to heal from this infection as SOON as possible, and then in a month we go back to remeasure the atrial septum and until then we will pray for God's mercy. As I was thinking about the fact that our daughter is so "rare" and that every doctor we have ever seen has told us that I realized that being "rare" sure isn't always a bad thing. Her living is "rare" and I'm more then okay with my "rare" sunshine. She is perfect in every way to us and we are so proud of all the hurdles she has faced and beaten!

Wednesday, July 27, 2011

A little scare

So this evening as I was getting Ella ready for bed I hooked her up to her heart monitor just to make sure all was well before sending her off to bed. What we saw when we finally got a reading was unsettling to say the least. Her oxygen should be around 85-95, in the last week or so it has been around 80, as long as it stays above 75 she doesn't have to be on oxygen. Also her resting heart rate should be around 120. When we hooked her up this evening her oxygen was down at 68-73 and her resting heart rate was 163!!! This is not good. I called the cardiologist on call and we agreed that despite the obvious danger in taking her to the ER with all the germs that would be there, if her heart rate didn't come down in 30 min. It would be absolutely necessary to take her in. So we hooked her up again and her oxygen had come up to around 78-80 and her heart rate had come down to around 150. So still high but low enough we felt like we should just keep her home and have her seen in the morning. The cardiologist explained that even though their is clearly something that's causing a problem it may be an easy fix. He said this could all be stemming from her "viral" infection. Which is so small it can't even be for sure diagnosed as a "viral" infection. This is the stark reality of how IMPORTANT it is that we keep Ella healthy! A tiny bit of clear snot from time to time and she is nearly put in the hospital!!! However this could also possibly be an actual heart issue, we are praying that this is not the case. We are seeing the cardiology tomorrow and we will have labs, echo-cardiogram, ekg, etc. all the usual run through, that being said please pray for Ella's anxiety level tomorrow as this will be the third time to go to the doctor in a week and it is EXTREMELY difficult for her. She has severe anxiety at doctor's due to all she has endured, it is very hard for us to watch  her shake in fear so much. On a good note, after Ella fell asleep we checked her again and she was sating so great! Her oxygen was 90-95 and her heart rate had dropped to 120! This is higher then it has been in a really long time, so we aren't sure what to think, but we are happy! This heart rate is still a little high for her sleeping heart rate because that is usually around 105 but we will take it for sure!! Praying for peace and wisdom and hoping to get some much NEEDED answers tomorrow as well! Thank you prayer worriers for lifting us up to the Father when we are weak!

Also I thought I would post a pic of Ella's newest trick! Standing all by herself for several seconds at a time!

Tuesday, July 26, 2011

Dr. visit

We had to take Ella in to her pediatrician again because we had some more concerns. After her last appointment  she seemed to do well and her nose seemed to dry up a bit, so we were encouraged. However, Since then there have been several warning signs that we felt we should take her in again. Turns out her left ear that had fluid on it has now turned into an infection. :( This is most likely the main cause behind most of her other problems (fast heart rate, low grade fever, not eating well, not sleeping well, etc.) Also the rash that was on her chest scar is not eczema after all, she said it is a bit of a mystery to her, but she is quite confident that it has nothing to do with her heart but rather a viral infection coming out in the form of a rash on her chest. We are sad that our baby is sick. This is the first time. I knew it would happen, but I.just.don'!!!  One of our main concerns is that her toes and her fingers, her lips, tong, and nose have been tuning blue often even though it is just for short amounts of time. We take Ella to see her cardiologist on Monday, and hopefully we will get a good report. In the meantime Ella could really use some prayers as she is fighting off her first sickness... I know an ear infection may not seem like a big deal, and just an ear infection on a healthy kid may not be uncommon. But Ella is having all sorts of other difficulties and it is causing stress on her heart as well, so it is a big deal for our sunshine. Please please please keep her in your prayers. I will give an update after her cardiology appointment sometime next week.

Saturday, July 23, 2011


Well as you all know it has been our goal for the last 11 1/2 months to keep our sunshine healthy! So far so good, until a few days ago. She had a little bit of clear snot and of course it caught my attention since she hasn't ever had a runny nose. She hadn't slept well and was running a very low grade fever (99.3). So after a few days of her having these slight symptoms I thought it was most likely teething, because she was not eating great and just showing all the signs of a new tooth trying to surface. Then she got a diaper rash from the heat. She has also had a strange looking rash on her chest scar for quite some time. With all this going on I decided to take her in just in case. Turns out, she has eczema on her chest. The doctor gave me some cream for it, hopefully that will help. Turns out she has yeast on her bottom, the doctor said all the babies seem to be getting it with this heat. Turns out she either has a very mild cold, allergies, or is just teething. The doctor said she had a very small amount of fluid on her left ear but it is not infected. We are praying it doesn't turn into an ear infection. Over all she said she looked great, she said she didn't even think it was bad enough for benadryl. So over all I guess she isn't sick, but still kinda sad. I am hoping to keep her "sick free" at least till she turns 1. We are so close, so hopefully this cold/teething/allergies thing doesn't turn into sickness!!! Sickness is band from my house! If it does turn into a full blown cold, I will be very disappointed. Ella's nose doesn't seem to be runny much at all anymore, but she sounds a little congested in her head. I guess we will have to wait and see. God has a plan and I know that He is taking care of her, in fact the doctor was just amazed that miss Ella is 11 1/2 months old and had never even had clear snot before! So I guess He is in control! I told her that we have been very careful, and she said even being careful that is amazing! We are getting used to hearing from doctors that she is doing beyond amazing, but it never gets old!!!!!!!!!! Also our sweet sunshine is pulling up to a standing position without help! She has done it two or three times while I have been watching and three times when I haven't been watching! Two of those times were when we went to get her up from a nap she was standing in her crib!!! She is such a BIG girl! She loves to play with her leapfrog learning table and she will take a few steps (still pretty uneasy) while hanging on to it! If I put the table next to the couch, she will transfer from holding the table to holding the couch! She is crawling all over the place, she is getting pretty fast too! She is just doing GREAT! Thank you all for your continued prayers for our sweet sunshine!

-Please pray that whatever this is that she is dealing with would not turn into sickness!
-Please pray that she would be able to eat and sleep better soon!
-Please pray for her heart friends, especially Annabelle. Annabelle had a heart transplant and had a severe episode this morning and required cpr, an ambulance ride, mediflight, a ventilator, and picu stay :(

Ella's new trick!
 The two loves in my life having fun :)

Wednesday, July 20, 2011

The Official Invitation!!!

The party is in Shawnee, OK! Thank You to Rita of for the beautiful invitation!

Saturday, July 9, 2011

11 months with our miracle!

Ella Dawn our sunshine, You are 11 months today wow! Three days ago you crawled for the first time! Mommy was so proud I cried! Daddy was home too and he cheered you on as he watched! You pulled up to your knees for the first time on Thursday, and your favorite thing to play is peek-a-boo! You have loved this game for a long  time, but you have a whole new interest in it, as in you would play for hours on end without pausing! You are loving books and standing! You seem to be getting quite tall and your hair is growing! You are fighting two new teeth on the bottom that just won't pop through yet! You LOVE music and you love to hear and say your name! You are so cute and smart! We finally have caught up on all your yucky shots we just had the last two on Thursday we have more due in the next few months, but at least you aren't behind anymore. Shots are always hard on all of us, you especially, but this time was especially bad since you know the room and the nurse. I could feel you shaking in my arms in anxiety after the nurse had said hi. You started to cry because you knew why we were in that place, you looked so sad. When the nurse came in with the shots and I had to lay you on the table you started to cry so hard and just looked into my eyes like you did not understand why I was doing that at all. it broke my heart, I cried. As soon as the nurse finished I scooped you up and daddy wrapped us up in his big strong arms... that seemed to make things a little better. As always you were very brave and we were so proud! I can't believe you are so big already! I am loving each new stage with you, but it's all flying by too fast. With two hands from mommy or daddy you can walk all around now instead of just a few steps! You have been doing so great with eating some solids, you hardly gag at all anymore! You like your sippy cup too! You are so special sweet girl, we love every single second with you! Happy 11 month birthday Sunshine!!!!

Tuesday, July 5, 2011

Ella's fist 4th of July!

Ella's sweet "hand-me-down" dress from her cousin!
                                                           She knows she is the star :)
                                                  Wearing her bow from her heart friend Emma!
                                                                      My goofy girl!
                                                                           Our Family
                                                                     Love her so much!

                                                                         Happy Baby!

Saturday, July 2, 2011


One morning she woke up with her hair strait up in front, I guess she slept on her face lol

                                                           She always makes us smile!

                                                            Going out on a family date!
                                                The date started with dinner at one of our favorite places. One of the few places that sounded good from time to time while I was pregnant, also one of the few places that I haven't thrown up in their toilet (not that you wanted to know that)! This trip was extra special to me as it brought back memories of times more uncertain. Jon and I went here just weeks before we left for Dallas with all the unknown ahead. As we sat there eating, a couple walked in with their brand new baby girl. In fact they had come straight from the hospital, she was still wearing her hospital bracelets. I couldn't help but cry. I desperately longed to embrace that little baby and sob, but knowing the parents wouldn't understand I refrained. One of the hardest things for me was seeing parents bring their new born's home right away, I was happy for them, but angry and sad that I wouldn't get to take my tiny baby home right away, and for that matter maybe never. So on this day, as I sat one booth away from where that family sat back then, Ella smiled and cooed, happy and healthy 18 lbs. 10 months old, I couldn't help but cry again. This time they were tears of joy and whispers of beyond grateful "thank you's" to my merciful Jesus. Sometimes as inadequate as "thank you" is, it's all that can escape my lips... and I say it over and over and over again...everyday. God is so Good!
                                                             Here we are, a family of 3!!!
             Next we moved on to Ice Cream! She went to town at first but quickly decided she had enough ;)
 A few days later she had a bite of Oreo and loved it so much we had to get out the camera to catch her                             excitement... this was the result of my camera shy child hahaha she is such a goof! :)

                                                               I LOVE MY FAMILY!!!