update

Ella is still about the same, she is slowly dropping in her sats and it's really just a matter of time before we have to intervene with surgery. We are praying and hoping her sats hold out longer then the flu season, and that she miraculously gains a lot of weight between now and the time for surgery. 

Overall she is handling this very well, I am thankful for her constant smiles and determination to keep going even when she is tired. Sometimes while she is playing she gets so winded she will fall down, I always see a deep determination every time she immediately jumps back up and keeps playing. If I didn't make her take breaks and catch her breath I'm pretty sure she would never let her heart slow her down. That determination I see in her is my inspiration every moment, because it's just really really hard to see, some days are harder then others, but I know she loves life and she is SO very worth the fight!

We lost two babies this week in my online heart mom group, it's always a punch to all of our mommy guts whenever we lose one of "our" own.

This Friday the 1st is wear red to bring awareness for CHDs (congenital heart defects) We would be honored if you would wear red in honor of Ella and all of the little heart warriors! Feel free to comment and let us know you will be in red for our girl this Friday! Awareness is so important!

Over the next month we would really covet your prayers as it is one of the worst of the flu season. Please pray that we all remain healthy and strong, please pray that Ella's sats hold up until God's perfect timing for her surgery, and pray that we will have peace and strength when that time comes.

Thank you all for helping left us up when the road is so scary, we know that God is good and that He is our strength!

Our Ella girl and all of her special friends, she sleeps with them every night.

The balancing act

In October Ella had to have a cath surgery due to constant desatting (oxygen dropping to dangerous levels).

The surgery reviled a very large collateral that they had to plug (her body created a new route to flow the blood the "right" way since with Ella's special heart they make her blood flow differently then the natural way.)

The plug should have instantly raised her sats to a good level, instead Ella continued to desat, we don't know why.

We watched her as she made some slow improvements.

In the begging of November Ella finally hit 86 and her oxygen leveled out there.

The good news only lasted about a month and in December she started to have unstable sats again and had some desats from time to time.

On Dec. 27th we took Ella to Dallas to be checked. All the tests looked good besides a slightly elevated blood oxygen test, but because of her symptoms it was determined that something is wrong and we needed to go back in through a cath surgery to find out what.

Because of the severity of the flu season, we all agreed it was in Ella's best interest to try to wait out the flu season before exploring further into what is causing her problems.

On Jan. 10th Ella started to run a low grade fever, it only went as high as 101.4, we watched closely and hoped it was just the molar she was cutting (since she has run a low fever with some teeth in the past)

We then realized her heart rate was way too high, by that night, instead of her normal 90's it was in the 180's while she was sitting perfectly still.

I called the doctor on call in Dallas and they urged us to take her to the ER, but by God's grace I was able to persuade her to let us monitor Ella at home as long as her heart rate continued to come down. Her heart rate did come down to the 120's after she fell asleep, and although it was still high for her normal 80's sleeping heart rate, we decided she was still less at risk at home then in a germ ER.

The next morning we took Ella to our family doctor where she had a series of tests to rule out any sickness that may be brewing, since sicknesses can present themselves in heart babies like this. All the tests showed no viruses.

We still don't know what caused her heart rate to do what it did. Her cardiologist thinks she may have had some sort of virus despite the negative tests and lack of other symptoms, I think it could have all been related to that molar even though it never did come through the surface yet. Whatever it was it hit her hard and it was scary.

Since then her desats have been less frequent then before, but still happen from time to time. She is out of breath everyday. She is blueish/pale several times a day. When she plays too much, her color is really off and she starts to cough and point to her mouth and say "choke". It breaks my heart that her lack of oxygen makes her feel like she is being suffocated just because she was playing like she wants to.
 
Our newest concern is that when she is really out of breath and blueish and we hook her up to her monitor her oxygen has been high 80's. While these numbers are ones we would love to see regularly, the concern is that they do not match with her body. Her oxygen should not be higher then it's been in over a month if she is blue.

So after talking to her AMAZING cardiologist on the phone yesterday, we are still where we were. She needs a cath but we have to decide at what point the risk of keeping her home is more then that of  a hospital full of sick kids during one of the worst flu seasons. Prayers for her safety and wisdom for us and her doctors are SO appreciated. 

Until we get her cath we really won't know more then that, however we are watching her VERY closely and it is crucial that she stays well. Over the last few days she has been satting in the 70's barely even touching the low 80's from time to time. While that is "okay" it is not ideal, and if it gets too much lower we will have to do something. It is SO important that she stay healthy right now, sickness means lower sats, lower sats when sats are already low mean hospital, hospital during flu season means more sickness, more sickness means more complications... etc. It's just really important. Prayers for all of us to stay healthy SO appreciated.

We are in a difficult waiting game, we are all stumped as to what is going on. We are leaning on our faith that God is in control. We do ask that as we approach this upcoming surgery, that you please lift Ella up in prayer. She is a miracle already, we know she is strong, but we know that this is all new to the medical field and we are still scared, because we see reality all around us.

Thank you all for your love and support!

First hair cut!!!

The day was so beautiful that after Ella's nap we all went outside to play, then Ella got a bubble bath while face timing with her nana and grandaddy, then she got her first haircut (via mommy and daddy...but mostly daddy!) and then got to eat pizza while watching veggie tails! Yes it's been a good day!

desat again

Stopping by to update all of you as I'm sure you are wondering how our little sunshine is doing. Ella is doing okay, she is still not where we would like, but not bad enough for a hospital visit. Her heart rate hasn't been way too high since that one day when I last updated, it is maybe slightly high, but totally fine. Ella's oxygen it low, but for the most part staying between 80-85 so it has certainly been worse and we are thankful for what she is getting.

Ella did have a desat episode yesterday evening and her oxygen dropped to 54. She handles it very well usually just out of breath and sometimes pretty blue, but she was singing and didn't even want to hold still for me to monitor her. I am beyond thankful for her ability to love life despite what her body must be feeling with nearly half the oxygen she should be getting. The thing about this episode that concerns me is that usually they last 5-10 min at the most. This one lasted right about 30-35 min. It took quite awhile for her body to bring up the numbers. As you can imagine that is hard to watch, especially when the hubby is at work, thankful for "survival mode" that my body has learned to click into despite my own racing heart and shaking hands. It's obviously important to stay completely calm but also to respond according to the situation, it usually looks something like this.

 I think to myself "Ella looks a little off, I bet her sats are low, I better get the monitor, thank goodness she looks like she feels okay," I then ask calmly for a "good finger" to check and Ella pops a chubby often blue finger in my face and I praise her for her quick obedience. As I wrap the sensor around her finger she might start to wiggle and decide that she doesn't feel like holding still right now, in the meantime my heart is racing and I'm thinking "I need to get this now! What if it's really low this time?" reminding my self to use calming tones as I convince her we need to do this right now, she usually bargains with me by saying "I neeeeed Danial Tiger's Neighborhood on momma's phone" I smile and say "okay" She then holds still and I stare at the monitor waiting for the numbers to appear "this feels like forever, come on!! Why can't I get a signal?! God, please help it be okay" Then finally the numbers pop up and the alarm starts sounding to alert me that my child's oxygen is far to low "I start to feel panic in my heart and remind myself to hold it together, this happens all the time and she always comes up, give it a minute. What if this... NO! Amy don't go there, look at that smile" I sometimes start to cry a little but I manage to keep it calm. "Call Jon, stay calm, you're doing it, good job! Get the stethoscope, listen for arrhythmia's, what a beautiful sound, gosh it sounds fast, but it's okay. Cherish the sound" I close my eyes and try to hold in tears as I listen to what I would describe as a perfect heart. I look at the monitor "Why aren't her numbers coming up yet, dang it! this is too long, what do I need to grab for the ER, wait it's up a little, please please Lord help her, I can't take her to an ER the germs could kill her! I need to shower, really Amy? You think you will care if you had a shower if you are in the ER with her? Why is this happening while I'm home by myself?? Give Jon an update, it's moving in the right direction, my word time is flying and creeping at the same time. My eyes hurt from staring at this screen, I hate CHD's I hate HLHS, this is NOT fair, I hate that she has to go back, another open heart surgery, Finally her numbers are getting higher, I guess that's pretty close to her current normal, why does it still feel to low? oh, right, because it is. What is going on? I wish we could figure it out!! What are we missing? Time to take of the monitor Amy, you can check on her whenever you want, it's been 45 minutes." I let her up to play.

 I realize that it's true, sometimes ignorance is bliss. She was just as happy and playful as before. I remind myself that I have to keep it together, I have to trust God, I have to keep going, this wasn't the first desat and it won't be her last, It could get much much worse like before when it was more then 10 times a day. God has walked us though a lot, my fears are not too big for Him, He isn't scared away by the heaviness of all we have to face. Thank goodness for that!

Please be praying for continued health during the flu season, please pray extra special for Ella's heart friend Emma, she has tested positive for RSV an extremely hard virus for a heart baby!

Please be praying for Ella's heart to be strong for her lungs to be strong, for her oxygen to stabilize, for us to be able to push her cath surgery out of the flu season if at all possible, For wisdom for her team of doctors to know what is going on and for us all to know what step to take next. Ella has had 6 heart surgeries, 3 open heart, and 3 caths. We know she has at least 2 more in the near future. We are trying to focus on today, on this moment, We love our little girl more then could ever be put into words. This never gets easier, but God is faithful. Thank you all for the prayers!

 

She decided that a bucket was a suitable hat, I agree!

PICTURES!

You can thank my hubby and dad who figured out the picture download until late last night! Enjoy the cuteness! :)

Decorating Christmas cookies

 

Opening presents!

My personal favorite :)

Annual trip to see Christmas lights!

I love to stare at her, she is so beautiful!! 

She gets serious about dress up hahaha!

Last night after Ella fell asleep, her oxygen came up to 86 and her heart rate was down to 88! What a wonderful feeling to see those numbers! This morning she is still a little high on heart rate and low on oxygen, but doing okay. Keep those prayers coming! God is good!

update on Ella

Ella has been doing better today then yesterday, we almost took her to the ER last night after talking to the doctors in Dallas, because her resting heart rate was in the 180's and her normal resting heart rate is in the 80's-90's. It came down into the 160's after some time and we decided to put her to bed and see if once she fell asleep it would drop more.

 Once she fell asleep we checked her again and her heart rate was in the 130's her sleeping heart rate is usually in the 70's-80's so this was still concerning, but finally around 2:00 am her heart rate came down and mostly stayed under 120, we decided to keep her at home. At 3:30am her heart rate came down even more into the lower 100's and then was still holding there when we checked her again at 5:00am.

By 7:30am we got up to prepare for Dallas if needed, Ella's heart rate was in the 130's and she had a fever of 99. We gave her some ibuprofen for the low fever and I called Dallas again. They told us that her cardiologist wanted to keep her out of the children's hospital if at all possible so he wanted us to start with our family doctor and then once he checked her over we would decide if she needed to be in Dallas. So we took her to the doctor, they had us come in a side door and we were placed in a room right away to avoid contact with anyone that might be sick. We are blessed with a wonderful family doctor and a wonderful cardiologist!

At the doctor, even though she only had a temp of 99 that morning and had no other symptoms of sickness, we needed to rule everything out that we could, of course that meant checking ears, nasal swab, and labs. Ella was very scared, but did well and we were proud of her. We are praying hard we didn't pick up any germs while we were there!! All the tests came back normal.

I then called Dallas again to give them the update and find out if we were going to head to Dallas or not. Her cardiologist called me and we talked for a long time. He told us we could keep her at home since we have a monitor, but we are to watch her very closely. He is concerned, but the only thing we could really do at this point as admit her for observation and he feels like that is too high of a risk that she will get sick if we put her in a hospital. We don't want to put her in a hospital anyway unless it is absolutely necessary.

Her fever has been gone all day and her heart rate is significantly lower then it was yesterday although still elevated. Prayers are not only greatly appreciated, but they are needed! Ella's next step in figuring out her low oxygen levels is going to be a cath surgery. We don't know when it will be, we are praying we can hold it off to get as far out of the flu season as possible. More importantly we are praying for God's timing!

Ella's oxygen should stay above 85, but it is staying between 73-83 for the most part. We really don't know what's going on, but God does and we are trying to rest in that. God has been so good as to give me scriptures throughout yesterday and today that are speaking truth to my soul. I am so thankful for those hugs from my Jesus! We appreciate you all so much as you pray for our sunshine! I apologize for the lack of pictures recently, I have not been able to download any pics since we got our new laptop right after thanksgiving. I will try to figure it out soon. In the meantime I will post a picture that I already have and beg that as you look at her sweet face you send a prayer up for her! Thank you!

Update

We still don't have any more new information since we are waiting to hear from her Dallas team. However I know many of you are anxious to hear an update so I wanted to at least let you know what we are waiting on.

The last 2 weeks Ella has continued to have sats that go up and down. They are not improving and in some ways it seems to be affecting her a little bit more. She is more out of breath and a little bluer then before. We are still pretty confident that this is not an emergency but obviously something is going on that we need to figure out.

Ella is however cutting a molar and her heart rate has gotten up into the 180's and she is running fever even while on ibuprofen. These are concerning symptoms for a heart baby, but like I said we are fairly confident that it is that stubborn molar that just won't come through. Still we are monitoring her closely and GREATLY appreciate all your prayers, as it could be heart related.

This is a scary time for us as everything is unsure. We are praying hard for God's protection from the apparent outbreak of flu, stomach bugs, and every other sickness under the sun! 

I will let you know when I hear back from her doctors in Dallas, thank you all for your prayers for our girl.