flexibility- it's the name of the game.

We will now be heading down to Dallas on the 3rd instead of March 31st, apparently jury duty doesn't skip cardiologists.

We had to reschedule the liver test as well, so now we will be having Ella's liver ultrasound at 8:00am April 4th, and then we will talk with her cardiologist at 9:30am.

Prayers for God's timing, that we stay away from germs, and get some answers are so appreciated. We have taken Ella off of the steroid that she was on. We didn't see any good changes while she was taking it. 

Ella is still about the same with her sats, some days are worse then others, but over all she is stable.

She did conquer going down steps by herself for the first time this last week!! We are super excited about that. I know this is something most kids have done already, but Ella has always had a huge fear of steps even with help, so this was HUGE! We are so proud of our big girl! 

just a quick update

Ella is still the same, we will be heading back to Dallas April 1st to talk to her cardiologist and also to get an ultrasound of her liver. We are checking her liver to make sure it is not the cause of her desats. We thank you all for your continued prayers as we try to figure this out and keep Ella healthy!

 Snuggled on the couch for over 2 hours this morning, loved every minute of it!

This is her pretending to be cold :)

loves playing dress up!

Home sweet home

Well we made it home from Dallas, I've not had the motivation to post here since. Not only have we been tired physically, but emotionally as well. My sister was so kind to update for us while we were there so that all of my focus could be on Ella.

As you know by know, we did not get the results we were expecting. We don't know when her next open heart surgery will be, and we don't know what is causing her problems. A little history of Ella's health : After Ella's 3rd open heart surgery when she was 6 months old she had stable oxygen in the low 90's as she grew her oxygen slowly dropped a few points every few weeks or months. That was to be expected leading up to the next open heart that she will be having. She did well all the way up until about right after her birthday in August. She began to have lower then usual oxygen levels and then in September it really began to get bad. Ella's oxygen was dropping super low and then going really high and it was just all over the place. It got to the point that every time she got up and walked even a few steps her oxygen would drastically drop to the 40's and 50's. We saw her cardiologist and they did an EKG, labs, and echo, to try to see what was going on, everything looked great, but they decided to do a cath surgery to try to explore more. So in October Ella went in to surgery. They discovered a VERY large collateral that had to be plugged. They told us that it was strange that her oxygen was going up and down since in the case of collaterals typically your oxygen just drops and stays low, but they told us that should fix the problem immediately. Unfortunately, that was not the case. Ella continued to have severe desats with activity and they didn't understand. They told us to watch her and keep in touch. This went on for about another month with minimal improvement. Finally in November she stopped desating and her oxygen leveled out at 86, it was beautiful. That 86 lasted a month almost to the day and then in December, we were right back where we started in September. Every time Ella got up and moved she was desating. So we saw her cardiologist on Dec. 27th to discuss her symptoms. We came to the conclusion that Ella had developed another collateral and that she possibly had something called arteriovenous malformations (AVMs). We decided she needed yet another cath surgery to determine if she had one or both of these issues. If she was to have another collateral, then we would probably plug it again in hopes of holding off her next open heart surgery for a few months to help her have time to grow and to get us out of the flu season. Then, if she was to have AVMs we would do her next open heart in the next few weeks give or take.

Now, back to Wednesday. We brought Ella into pre op and she was hooked up to check her oxygen. She was sating in the mid 90's. This is NOT normal. We were all confused and didn't know what to think. They took her back to surgery and when her surgeon came out to give us the news of what he had found, nothing could have prepared me for him to say "Everything looks perfect, there are no collaterals or AVMs." While this is good news in the since that she doesn't have to rush into open heart surgery, it is bad news because now we don't know what is causing Ella to desat.

So what do we do now? We pray for answers and we research hard. They told us that with Ella's previous diagnosis of intact atrial septum her lungs will always be a concern (if you remember, when she was born they were so damaged she almost needed to get a heart transplant to support them.) Anyway even thought they have made a nearly 100% recovery, they are still a concern. They decided to send us to see a pulmonologist to check her lungs. She has had x-rays, not to mention her lungs were explored internally during the cath, then when we met with the pulmonologist, we talked for a long time about symptoms, he asked a lot of questions (all of which our answers indicated perfect lungs), he watched video of her having an episode of desating, then he listened to her lungs for a while. Then he looked us and and said "okay, I have no idea what's going on here." She looks great, sounds great, all the tests look good. Then he said that he wanted to start her on a low dose steroid inhaler for a few weeks just to rule out asthma "even though I know she doesn't have it, I guess we should rule it out since the medicine won't hurt her." was his reasoning. I have to be honest, we aren't loving putting her on medicine just because, but at this point we have to start crossing things off the list in order to figure this all out.

Ella has been using the steroid since Thursday and we have not seen ANY improvement, in fact she has been a little worse. She has started coughing every once in a while and it is starting to sound a little tiny bit congested. This medicine can cause you to get upper respiratory issues and make it hard for you to fight off sickness (among many other yucky side effects)... great. So I'm itching for her two weeks to be up so that she can get OFF this medicine.

They also sent us home with an event monitor to search for arrhythmias during her desats. We are SO thankful that they gave us the kind that we can just hold directly on her chest during an episode versus actual leads she would have to have on her chest for a whole month. We have already had 3 episodes on her monitor. Last night Ella was playing in the living room for literally about 5 minutes and she was out of breath so we hooked her up to her pulse ox machine and heart monitor. Ella's oxygen that they would like above 85% was 38%. Now, a pulse ox is not fully accurate below around 50% but that means that even if it wasn't quite 38% it was still way too low. That is by far the lowest number we have ever seen. Before this it was 48%.

We are getting a little desperate to figure this out, because despite the fact that all the tests look great, clearly SOMETHING is not right. After this 2 week trial on steroids, we may be looking at getting a cat scan (CT) of her lungs (that is LOTS of radiation and not ideal at all since she would also have to be sedated) and also we may start looking into her liver by getting an ultrasound.

We are not sure when her next open heart surgery will be at this point. We expect it to be sometime around this summer still, however we really need to figure out what is going on before we send her into open heart surgery since it could potentially cause issues in how the surgery will affect Ella.

We appreciate your prayers as we try to figure this out and as we try to find peace in trusting that God is in control. We know that He knows every intricate detail of Ella's anatomy because He is the one who formed her. We thank you all for your love and support.

 Ella's special Chicken Friend at the Ronald McDonald House.

In her bedtime prayers, she said "Jesus, thank you for Mommy and Daddy, amen, oops and the chicken in the bowl that goes bawk bawk bawk bawk bawwwwk, in Jesus name Amen!" it was SO cute!

 Morning of surgery

post op recovery :(

 x-rays

 Sleeping on the way home from the pulmonologist.

Don't forget to check out our youtube channel for a few new cute videos or our sunshine on our trip! "amyladawn"

Quick update on today's appt

Well, unfortunately again, we don't really have any answers. The x-rays and other lung tests looked normal. They are going to try to use an inhaler 2x a day for the next 2-3 weeks, just in case she is experience asthma, even though she has NO asthma symptoms and the dr really doesn't think she has it. He said they need to rule out every possibility.  Amy, Jon, & Ella plan to travel home tomorrow, so please pray for a safe trip for them. Amy will update in the next few days with more detail.

Thank again every, for praying!

~Aunt Kristina

Prayers needed today

Hi friends,

We wanted to ask for you all to specifically pray for Ella to have peace and a calm spirit today. She will be having some x-rays done on her lungs shortly, and then heading to her appointment with the pulmonary doctor at 12:15. After everything that she endured yesterday, today will be very hard on her emotionally. Please join us in praying that God will give her a spirit of power and a sound mind, and that she will not have a spirit of fear. She is such a brave little girl and did SO amazing yesterday!

Thank you all for praying, and we will update with the results of her pulmonary tests when we have them.

~Aunt Kristina

Surgery is Finished!

Jon & Amy are with Ella now in recovery just waiting on her to wake up. The Dr's said that everything looks great, at this point they don't know what's causing her problems. It could be that it's lung related, not heart related.  Jon & Amy will get to take Ella back to the Ronald McDonald house tonight, and the cardiologist is working on getting Ella an appointment with a pulmonologist there in Dallas sometime tomorrow or Friday. They will also be sending a heart monitor to be used when Ella has one of her episodes, so that what goes on with her heart during an episode can be recorded.  Immediate prayer requests would be that Ella will be calm & peaceful when she wakes up, and that Jon, Amy, & Ella are all able to get some good rest tonight. Also for continued protection from sickness.

Thank you all so much for your prayers, and we will try to update again later this evening.

~Aunt Kristina

In surgery

This is Ella's Aunt Kristina updating for Jon & Amy.  Ella has been back in surgery for just a little bit now. Prayers are appreciated as the surgery takes place, for guidance & wisdom for the dr's, and peace for Jon & Amy. I will update the blog as I have news.

Thank you all so much!

Here in Dallas

We made it here Sunday evening and things went well for the most part, Ella was hasitent to walk into the Ronald McDonald House due to her fear of new places thinking they all will give her "owies". But with each reassurance from us that there would be no owies today, she would walk on forward.

At bedtime we were all exhausted and when we told Ella it was time for bed, panic hit her. She did not understand going to bed here and not at home. She grabbed her bedtime story went to the door and begged to go home. She was sobbing, my heart was breaking. I wondered if we had made the wrong decision to come so early and have night after night of this until her surgery. Finally Jon asked her if she wanted to snuggle with me for awhile in our bed she said she did. We decided to see if she wanted to sleep in our bed that night. Usually this would have been met with a resounding "I sleep in Ella's bed!", but this time she said yes, so the three of us snuggled in together in the tiny bed to go to sleep. Jon and I were excited, to be sleeping with her, because we miss her at night, but knew it might be a long night of little sleep.

We were right, we didn't sleep much, but as she slept with her sweet little arm over my stomach and we held hands, I just stared at her perfect profile that I could clearly see with the brightness of the Dallas night life out of our window and I began to cry. Not only was this the first time we have all slept together since Aug. 8th 2010 the night before she was born, but we were in the same place, in a room with the same layout as our first stay. I thought about my fear that night as I was awaiting her birth, wondering if it would be our last night ever with her. As the tears slid down my cheeks I thanked God with all of my might that she was here with me again. So even though we didn't get much sleep, it was a night I won't ever forget.

 At 6:30am Ella sat up and declared "I'm all done sleeping!" As apposed to her normal 8:00am wake up time. We started the day, with her asking to "walk" which we have learned is her way of handling stress and is one of her favorite past times. Although this is a healthy habit and one that will be useful in her future of trying to stay fit, it is currently not ideal considering her significant drop in sats when she is walking. We just survived to nap time, we were really tired. Ella went down without a problem in her bed and we slept right along with her in our bed. I'm really thankful for how quickly she adjusts to new surroundings! She has been sleeping well and in her bed ever since.

We never did have much snow in the path of what would have been our drive, but we are still so thankful that God made the way for us to come down here early. We would have been so very exhausted had we come down on Tuesday, now we have settled in and had lots of time to rest! God is watching out for us!

We are scheduled to report at the hospital at 9:30am and I'm not exactly sure what time the actual surgery will be, but it will be sometime after 11am. Tomorrow is really the hard part. Tomorrow we will send Ella into her 7th heart surgery, a stranger will carry her out of our view and we will have no control over what happens for the next few hours. Thankfully I am sending her in to a cath surgeon who I have so much trust in, and I know that God is in that room with her. Tomorrow they will look to find what has been causing so many problems. Tomorrow they will decide if her next open heart surgery is in the next few months, or very very near. Tomorrow Ella will be in pain, terrified, and exposed to countless horrible viruses. Tomorrow we put every ounce of hope and trust in God for strength to get through this next step.

We are humbled to ask you yet again for a flood of prayers on our sunshine's behalf. She means everything to us. We thank you all.

Little change in plans

Instead of heading to Dallas on Tuesday, we are heading out today, we will be leaving shortly. Ella is still scheduled to have her cath this Wednesday the 27th. We are supposed to possibly have some bad weather in Oklahoma and just didn't want to risk missing her surgery due to bad travel conditions.

We will be staying in the Ronald McDonald House. It was truly a blessing that we got in, they told us they are very full and had no room for us. They told us the waiting list was 10 families hoping to get in tomorrow, and 8 families hoping to get in Tuesday! Then they told us they had their housekeeper call in sick, so we couldn't stay there. Jon talked to them and explained the importance of us having a healthy housekeeper due to Ella's heart and offered to clean our own room (we would clean it when we get there anyway.) they discussed it and when we talked to them again, they told us one of their volunteers had said they would prepare a room for us!! We are so thankful!

Please be praying for safety as we drive, safety from the germs that will be ALL around us, peace and wisdom for us as well!

Ella will be facing her 7th heart surgery this Wednesday, we can't put into words how hard this is, but we find strength in knowing who holds the future! Thank you all!

The next step in our journey...

I have yet to post here, since I've been waiting until I had all the information, but Ella is having some complications.

Ella's oxygen is often in the 60's and some 50's. Basically if she is standing and moving at all, even just walking, she is in the 60's. If she plays more normally, she can hit the low 50's. This is very low, but the good news is that if she is sitting down, she is still hitting as high as the 80's. She is not on oxygen at this time since she is still bringing her numbers up with rest.

The plan is for us to head down to Dallas Feb. 26th and then for Ella to go into a cath surgery on the 27th. That is the same surgery she had back in October. This will hopefully give us some answers. We are suspecting that she has developed another collateral, if that is the case we will either get it plugged and hope to hold off her next open heart surgery for a few months, or they will leave it and we will proceed with her open heart surgery, not right then of course, but in the very near future.

Ella's cardiologist would really like Ella to be 4 years old for this next open heart surgery, however at this point we are realistically going to be lucky to make it to this spring/summer before needing to go ahead and have the Fontan (the name of the surgery).

We are trying our best to trust God's timing for her surgery. We would obviously like her to be the "ideal" age and weight for this surgery and going in small isn't what we were hoping for, however it's where we are so, we are going to have to roll with it. We know that God's ways (and His timing) is not ours, so we have no choice but to trust that He is in control.

I'm not going to lie, this is a very hard time. We know the next several months are very likely going to be some of the hardest months of our lives. It is emotional to even think about best case scenario, because we are talking about sending my two year old daughter into her 4th open heart surgery (and no, it doesn't get easier), even if it goes perfect, it's never something you want to face. Then you add the fact that the complications can be very difficult after this surgery and you realize that you could lose her. That the morning before surgery it may be the last time you hear her voice, you realize that even if she makes it through the surgery, it might not work and we may have to get a transplant... etc. oh the fears are endless and really can't be dwelt on without crippling you, so we focus on the here, the now, the smile on our sunshine's face as she sings songs from Cinderella and Danial tiger's neighborhood.

After her cath surgery on the 27th we should have a better idea when her open heart surgery will be and I'll try to update here as soon as possible when we know.

-Right now we appreciate prayers for Ella to stay HEALTHY (we are going back during the flu season and it is not ideal at all!)
-For Ella to gain weight before her open heart surgery
-For Ella's heart friend Emma who isn't feeling well
-For God's timing in all of this
-For her cardiologist and her cath surgeon who will be making the decisions on when surgery is needed
-For us all to have peace
-For safe travels the 26th

We thank you all for your prayers and support during this difficult time, we knew this was coming since before she was born, but you just can't prepare for something like this.

CHD awareness week!

February 7-14th is CHD awareness week! I'm slacking a little in my blogging, we have had lots going on, but I was determined to update this week! Here is last years post! (http://elladawn.blogspot.com/2012/02/chd-awareness-week.html)

1 out of 100 babies will be born with some sort of Congenital heart defect.

That's 1%. 

Ella was that 1. (although with all of the other details to her heart defects she is more like 0.00001%)

Your child could be that 1.

I'm not trying to scare anyone, because I don't want you to live in fear. But thinking "that just won't happen to me, to my child" doesn't mean that it won't. I was completely shocked because I didn't even know what a CHD was. The first time I heard the term was when I was 21 weeks pregnant being faced with the harsh reality that this would be part of my child's life, and I was being offered the chance to end her life.

Often times defects are missed via ultrasound, even something as big as missing half a heart! If you are pregnant I beg that you ask for a pulse ox test on your infant within the first 24 hours of life. Despite all other tests looking good this is a great way to check for a heart defect. The great thing about this test is that it is painless, simple, and takes only a few minutes tops. Here's the thing, it won't be offered to you and won't be done without your request. I know it might put several of you out of your comfort zone to ask a nurse for a test that you don't know much about, and to have them act like you are stupid for asking, but Please do it for your baby.

I remember the day like it was yesterday. I walked into my ultrasound sick as all get out from my very hard pregnancy thinking that being that sick was so hard. Everyday I struggled to survive, little did I know life was a walk in the park compared to what was coming. This was actually my 4th ultrasound since we had almost lost her before. I, being a first time mom, and a little lot naive, all I could think about was if I was having a boy or girl. I didn't think about baby being healthy, after all we had checked on the baby so many times before I guess I assumed we would have already known if something was wrong. In fact we had already been specifically bragging on her strong heart that had been visible earlier then most.

The tech wasn't particularly kind, but I didn't mind, I was so excited! I remember her making some off hand comment about how annoying it is that parents come in excited about the gender never thinking about the health of their baby. That shot a feeling of guilt/fear right through me. I thought to myself "oh my goodness something could be wrong? Why didn't I think about that?" With the ultrasound revealing a HEALTHY baby GIRL we were thrilled to pieces. It wasn't until the next day that things began to unravel.

The next day I received a call, a nurse saying they had found an abnormality on the ultrasound concerning the heart and I was being referred to a perinatal specialist. The appt. would be in 10 days.

At that appt. we were told that our daughter had a Congenital heart defect called Hypoplastic left heart syndrome, essentially that meant she had only half of a functioning heart. She was given about a 75% chance to live with at least 3 open heart surgeries in her first 3 years of life. We were then offered to terminate the pregnancy, that hurt more then the CHD diagnosis. For a doctor or anybody really to find my child less then worth life because of an abnormality is just wrong. We knew she was worth fighting for! God had a purpose for her!

It was 2 weeks later that we met with a pediatric cardiologist who did an echo on our baby via my belly. After the echo was reviewed he and the perinatal specialist stood at the foot of my bed and discussed a bunch of things with one another about our daughter's heart. Jon and I just looked at each other and shrugged. Then the cardiologist hit us with some sort of description of what we already knew Ella had and then when on to say that they actually had found another defect that makes her extremely rare and extremely hard to treat. He gave her a 20% chance to survive.

It's been a long hard road since then, and many of you have followed the blog since then as well. But today Ella is 2 1/2 years old, She has had 6 heart surgeries, she has had oxygen, feeding tubes, cpap, ventilators, meds, tons of pokes... etc. but she is ALIVE and she is THRIVING! She has surpassed all the expectations and is continuing to surprise her medical team in Dallas.

So this week I desire to spread HOPE! There is life after CHD diagnosis... it's hard, but it's beautiful and oh so VERY worth it all! 

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!