Saturday, November 19, 2011

Family Pictures!

Back in August, we had the privilege of getting our pics taken as a gift by Dejah Quinn  She had donated a wonderful package to us for Ella's run! Here they are, hope you enjoy! Ella is such a fun baby!!!

Thursday, November 17, 2011

Finally feeling better!

Just wanted to stop in here and let all of the prayer warriors know that Ella is feeling MUCH better! She is still on her antibiotic for the ear infection, but she isn't running any fever and the rash is completely gone! I can't tell you how wonderful it is to see my sunshine playing again!!! She even surprised me and skipped her morning nap the other day because she was so happy and hyper! That made me smile! She had been so tired, it was good to see her with some energy again!! Also a big announcement... Ella walked yesterday evening!!! She has been taking a step here or there for the last three months, but really showing no interest. Last night she took a good 5 steps in a row and then took multiple steps more then once too!! It was awesome! I felt like I did the first time that she crawled, she is reaching a whole new milestone of independence. A whole new part of growing into the person that she will be. Achieving goals that we never knew if she would have the chance to learn. She makes us proud with her daily smiles and determination. Somehow I never knew how great this life could be, she is a joy! She is sunshine in the midst of life's difficulties and disappointments. She is a gift! One I will NEVER for one moment of my life take for granted. I know just as fast as she went from her first little thump inside my belly to walking and asking me to read her a "book"  that life isn't going to slow down. Just as much as I wish I could hold time still to just enjoy it all just a little longer, I know that this will be the only chance for me to live these moments and so with sadness that they are passing I have joy that they happen and that the moments that we have together as she will grow and learn will be in my heart forever. I know she will continue to thrive and that she will continue to hit milestones that are going to make me cry. I cry tears of sadness of a season passing and tears of Joy with each new goal met! Ella Dawn oh how you hold my heart!! I love you more then all the words could ever say!

Thursday, November 10, 2011

Update on my Ella...

So Ella is still fighting the ear infection, plus cutting at least 5 teeth, and still running fever from time to time.  She now has developed a rash (see pics below) covering her front and back and now creeping up her neck. Also she is just NOT feeling good, she just wants to lay in daddy or mommy's arms all day long. She will play for short amounts of time, but mostly just wants "up". She is laying down for her 3rd nap of the day right now (her first 2 were 2 hours each) after sleeping 11 hours straight last night. After talking to the pediatrician we have two things to think this rash could be. First off she may be having some sort of allergic reaction to the antibiotic, or she may have something called Roseola (google it). Some people have mentioned to me the possibility that she may just have a virus coming out in the form of a rash, and that her ongoing fever since Sunday may have something to do with it as well. As of right now we are putting a hold on her antibiotic for today and trying some Benadryl to see if it is the antibiotic causing the rash. If the rash continues to spread and does not go away, we will resume the antibiotic and just wait for it to run it's course. Luckily if it does happen to be Roseola, the rash is the last of it and is a sign that it is near the end. Right now it is a lot of if's and I am just ready for Ella to be better!! This has been so hard on her. We also had to take Ella to the ER Tuesday afternoon due to significant drops in her oxygen level. Ella usually sats around 83% with a heart rate around 125,  when she is teething or has an ear infection her oxygen level usually drops to the upper 70s% and her heart rate generally increases to around the mid 150s. The drop in oxygen and the increase in heart rate is due to the pain she endures at that time. As long as the drop in oxygen isn't too significant and doesn't stay in the low 70's or lower for a prolonged period it is fine. Ella's oxygen dropped and was staying in in the low to mid 60's% This is alarming, because it is not supposed to be that low! After calling her cardiologist it was decided that Ella would be better off going to the ER vs. the clinic since it was at such a dangerous level. Jon and I were hesitant to take her in since other then looking blue she was acting fine. We worried that the germs/sicknesses that we would expose her too at the ER would be worse than going to the clinic and risking not having the faster care, but the cardiologist basically said if we didn't take her to the ER we were making the WRONG decision. So we took her in, she was evaluated and then she had another desat episode (her oxygen dropped) while we were with the cardiologist and he was able to see the low numbers and that she looked okay regardless. So he said to continue to monitor her at home and if it continues to happen we may have to intervene, but if it goes away with her ear infection, then it was just from the infection. Yesterday Ella seemed to act like she was starting to feel a bit better, but then later in the evening started running a fever of 101 again and then broke out in the rash, today she has not been feeling well at all again and the rash has worsened and spread up to her head and some of her face. :(  We know that Ella is special and that everything that she experiences will be different then whole heart kiddos, but this is so hard to see. other then one other ear infection back in Aug. she has NEVER been sick. She has never had a runny nose or a cough. She has run a fever only once before with her teething when she cut three molars and her top two at the same time! So this is all very new to us. It reminds me that no matter how careful we are, we can't keep all the germs away from her. It also reminds me to keep up the good but hard work in keeping her as germ free as possible!! As of Nov. 1st, it is officially the DREADED flu season. Starting tomorrow Ella will begin her 2 shots (at one time) every month for the next 6 months. :( they are the shots to help prevent RSV, RSV is extremely dangerous for Ella. The healthcare nurse will come to our house, and Ella will know her face. She will cry and shake with fear of what is coming. I will have to hold her down as she gets a big needle thrust into both thigh muscles. It will be horrible. I am torn sometimes, I hate that my daughter has to have so many medications/ vaccinations... and at the same time I don't really have a choice. Of course I do physically have the choice to say don't touch my child, but for me vaccinations have always been about weighing out the pros/cons of each. I think with a healthy child there are some sicknesses  that may be hard on them, but the chances that they would get them are so small, that the damage that a vaccine can cause may not be worth it. Well with Ella an ear infection put us in the ER... and some of the other sickness would end in death. That out ways the bad in my book. So as hard as it is sometimes to know what to do, I just keep praying and treading to keep my head above the water. Nothing like making choices that can save or take a child's life. Such is parenthood I suppose. The good news is no matter what God is in control, and I am just a small piece of all of this anyway. I am so grateful that Ella's fever showed up the very morning we were going to see her heart friend. I never thought that Ella could be a health hazard to anyone, considering that I have never seen a healthier child. But God was protecting Emma and the signs showed up in time to keep Ella away from Emma and all the other sweet heart babies in the CICU at CMC in Dallas. Just thinking about how close we were to possibly hurting one of them makes me sick at my stomach. Please keep praying for our sweet sunshine in this difficult time. She could really use a break soon, thank you all. 

As for Ella's sweet friend Emma, she is OFF of the ventilator!!! HALLELUJAH! She was not supposed to live through the night a week and a half ago, but she is a rock star and God isn't finished with her yet! And we are so glad! Please keep praying for that sweet spunky darling! 

Ella not feeling like her usual self :(

 Ella's rash. (front)


Monday, November 7, 2011

Our Trip in Pics.!! :)

Ready to go!

 All packed in! She was perfect for the whole trip!!

 After 10 hours in the car and only 2 stops other then gas refills, she was happy to stay in her first hotel!

 Finally on the beach! This is a pic of us standing on our back porch!!

 She was happy but didn't like the sand on her hands! 

 playing with the sand!

 The first evening we were there we saw 6 stingrays swimming back and forth, literally just a few feet away from the shore. We also saw a shark further out!! :0

 Our pink poodle for Halloween!

 View from the master bedroom :)

 Ella's new favorite game is talking on the "phone" It is SO CUTE! She says "helloooo?" "hi!" :)

 night time on the beach!

 My love <3 

 Dress from our dear friend Leslie Click! 

 Getting ready to play in the sun!

 Sand castles like I used to make with my dad!

 wearing mommy's BIG hat!

 Chilling out! 

 Could she BE any cuter?? I think not!

 Thank you Lord for this trip!!

We got to see several dolphins right out in front of our porch!

We had the most AMAZING time in Florida!! We had a hard time on the way home because on the first day of our trip home Poor Ella was so constipated I didn't even know what to do!! Poor baby was in so much pain, luckily with my mom and big sister's wonderful advice, a quick detour and a suppository later and she was better. Then the next morning Ella woke up extra early crying, when I picked her up she was burning up. She was running a fever. We gave her some ibuprofen and it broke quickly and we were on our way. We just assumed it was teething since the only other time she had ever run a fever was the other time she was teething.  That had been about a month prior. The main problem was that we had changed our returning home route to include Dallas because we had planned on stopping in to see our friends the Stewarts. Since Emma is so fragile, we didn't want to expose Emma to anything if Ella's fever was more then teething. When Ella's fever returned right before we got to CMC in Dallas we had to bypass the visit all together. We were so disappointed. To make things worse Ella's fever kept climbing and ibuprofen and Tylenol together weren't breaking it. It reached a high of 102.9 last night before finally breaking this morning. It returned and broke and returned and now is staying around 100-101. We took her to the doctor and found out that she is teething, but she also has a pretty bad ear infection in her left ear. :( Hopefully the antibiotic will clear it up as soon as possible! It was good to be home sweet home though! Nothing like a sick/constipated  baby in the car. She was so good, but it was breaking my heart. I'm just not used to seeing her with sad eyes. Even though she keeps smiling it is sad. We thank you all for the prayers for safety for our trip! We were so blessed by this opportunity to go to Florida for the first time! I wanted so badly to take a family vacation before Ella's next surgery, God is good to give us the desires of our hearts!! Please keep Ella in your prayers as she is cutting 5 teeth and fighting an ear infection, please also keep her heart friend Emma in your prayers as she is doing remarkable but still has to get off of the ventilator!!