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!
Sunday, February 24, 2013
Friday, February 15, 2013
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.
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.
Friday, February 8, 2013
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 alittle 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!
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
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!
Wednesday, January 30, 2013
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!
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.
Thursday, January 24, 2013
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!
Saturday, January 19, 2013
First hair cut!!!
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!
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!
Saturday, January 12, 2013
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!
Friday, January 11, 2013
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!
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!
Thursday, January 10, 2013
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.
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.
Friday, December 28, 2012
Update on Ella's appt.
Yesterday was a LONG day we left our house at 8:15am and didn't get home until 9:40pm. We hit the road and Ella didn't say a word, she was just quiet and still for the first hour and a half or so. I kinda think she new where we were going. She then fell asleep, which was a huge blessing since she had such a big day ahead and wouldn't get a nap. She slept until we got to Dallas and woke up in a good/calm mood. We saw a few small icy patches but overall the roads were very clear.
We pulled into the parking garage and she said "no thanks" very quietly and she sounded scared, she knew where we were. We made it a game to find the different letters on the different levels as we searched for a spot to park.
We headed inside and there were people everywhere, it seemed unusually busy to me. Children everywhere, I heard lots of coughing and sneezing, I held my breath as much as I could. We had Ella in her stroller with a clear shield over her face area. We got up to the clinic where Ella charmed others with her smiles, words, games and counting ability. We asked her if she wanted an echo, she said yes! We have been "practicing" at home since last time it was so bad she screamed and just wouldn't hold still. They talked about sedating her, but obviously that wasn't ideal for us, so we practiced a lot. It worked, she was scared but didn't even cry and actually was SO good. They echo lasted over an hour, and she just laid there eating her sucker and watching Danial Tiger's neighborhood and Thomas the Train.
Then she had to get an EKG, it took 4 adults to hold her down as she screamed bloody murder. I HATE holding down my daughter. It is TERRIBLE.
Next we talked with her cardiologist for a while and he decided to send us for labs and x-rays. Both of those were miserable, obviously. But Ella managed to stay polite through the tears. During her blood work she was crying SO hard and she just kept looking at the lady saying "no thanks! no thanks!" The lady thought it was the sweetest thing and told Ella she was going to make her cry since she was being so sweet. She even told every doctor, nurse, tech etc. thank you when each test was completed. I was so proud to be her mommy!
We then met with her cardiologist again and her cath surgeon, and we all agree that she looks good and doesn't appear to be in an emergency at this point, however something isn't quite adding up the way we would like with her oxygen level. We are going to be watching her sats closely for the next week or so and then we will report to them how things are going and from there try to make a plan.
Right now PLEASE be praying for wisdom for us, for her Cardiologist, her cath surgeon, and her heart surgeon! Please pray for her heart to show us what it needs and what it can handle. Please be praying for her lungs to be strong and working well! We were reminded again that despite how great she looks and acts she is a very sick little girl and we NEED your prayers for strength.
We pulled into the parking garage and she said "no thanks" very quietly and she sounded scared, she knew where we were. We made it a game to find the different letters on the different levels as we searched for a spot to park.
We headed inside and there were people everywhere, it seemed unusually busy to me. Children everywhere, I heard lots of coughing and sneezing, I held my breath as much as I could. We had Ella in her stroller with a clear shield over her face area. We got up to the clinic where Ella charmed others with her smiles, words, games and counting ability. We asked her if she wanted an echo, she said yes! We have been "practicing" at home since last time it was so bad she screamed and just wouldn't hold still. They talked about sedating her, but obviously that wasn't ideal for us, so we practiced a lot. It worked, she was scared but didn't even cry and actually was SO good. They echo lasted over an hour, and she just laid there eating her sucker and watching Danial Tiger's neighborhood and Thomas the Train.
Then she had to get an EKG, it took 4 adults to hold her down as she screamed bloody murder. I HATE holding down my daughter. It is TERRIBLE.
Next we talked with her cardiologist for a while and he decided to send us for labs and x-rays. Both of those were miserable, obviously. But Ella managed to stay polite through the tears. During her blood work she was crying SO hard and she just kept looking at the lady saying "no thanks! no thanks!" The lady thought it was the sweetest thing and told Ella she was going to make her cry since she was being so sweet. She even told every doctor, nurse, tech etc. thank you when each test was completed. I was so proud to be her mommy!
We then met with her cardiologist again and her cath surgeon, and we all agree that she looks good and doesn't appear to be in an emergency at this point, however something isn't quite adding up the way we would like with her oxygen level. We are going to be watching her sats closely for the next week or so and then we will report to them how things are going and from there try to make a plan.
Right now PLEASE be praying for wisdom for us, for her Cardiologist, her cath surgeon, and her heart surgeon! Please pray for her heart to show us what it needs and what it can handle. Please be praying for her lungs to be strong and working well! We were reminded again that despite how great she looks and acts she is a very sick little girl and we NEED your prayers for strength.
Sunday, December 23, 2012
update on Ella's oxygen
Ella's oxygen level is still unstable, she is not acting different at all and is her normal happy self. Her oxygen is sometimes super low and other times super high. We are still planning on heading down to Dallas on the 27th unless something changes. Right now we just ask that you pray for her oxygen to stable out and that we will know how to care for her best. Just wanted to give an update for those that are wondering, Thank you all.
Friday, December 21, 2012
prayer request
Ella has decided in light of my last post to drop her sats from her normal 86 down as low as the high 60's, it's been hanging somewhere around 70-80 since yesterday evening, the goal after her last cath in Oct. was to have her above 85. She certainly likes to keep us on our toes. So we will be making an unexpected trip down to Dallas this Thursday for an echo to check everything out. We greatly appreciate your prayers as it is always a super long day with 7 hours in driving and the visit which usually lasts 2/3 hours. Also it is very traumatic for Ella to get the tests (echo, ekg, blood draw, x-ray) and in turn is also hard on mommy and daddy :( We ask that you pray for safety in travel, safety from germs we will encounter in a children's hospital during the flu season, that we will stay healthy leading up to her appt., that they will find the problem and that it will be very minor, for peace while we are there! Thank you all in advance!
Wednesday, December 19, 2012
Real life.
I find it hard to write here these days, just so many things go through my head, so many things I want the world to know about my miracle girl, about life as a heart family, about our heart friends. I struggle to find the words to show how it feels, how things are going, and so I usually don't write at all. But I don't want to just not write when I feel inadequate to accurately depict the feelings because despite the fact that this blog has generated a rather large following, I started it as a sick scared pregnant momma 3 years ago as a place to keep track of this road, the good and the bad, the medical updates and the feelings. It's not just for the readers, it's for me and it's for Ella.
Trying to put into words just how much Ella is loved is beyond imposable. The constant fear that hangs over my heart when I look at her is at times crippling. To love a child that is "terminally ill" to know that I'm "supposed" to out live her is just a horribly helpless feeling that never goes away. Learning to live with it is the only hope, the only way to live... Whenever I share the fear of not knowing how long we will have her, I am almost always faced with the response of "nobody is promised tomorrow, no one knows how long they will live, I could die in a car wreck tomorrow" It's not said with intent to hurt me and it is a true statement. But it is in NO way the same thing. As the CT school shooting is fresh on my heart as well as many others I realized that even though I am truly heartbroken for these families, I had a very different reaction then everyone else. Facebook and T.V. interviews were flooded with things like "I am holding my kids a little tighter today", and "not taking my kids for granted today". I realize it's a reality check for everyone, but it didn't change anything about the way I treated, or valued, or even thought about Ella. Why? Because everyday is like this for me. No, not everyday do I hear of 20 children dying, but everyday I see well over 100 fighting for life in the hospital fighting a heart defect. I see death weekly, sometimes multiple in a week. I am slapped in the face over and over and over with the ugly truth that this life is fragile. That unlike all these people that send their children off to school with chances of something going wrong so slim, everyday several times a day I look at my child and think is today the day? Is something going to go wrong? Heart failure, a stroke...etc.? It happens so fast. Will her heart just stop today? I struggle to write this, I hope my heart is clear on this, I am in NO way trying to downplay the suffering of the CT shooting, I am heartbroken along with the rest of America, I'm only saying that when you live with death at the forefront of everyday it changes everything. It changes you. I see an out of breath little girl with blue lips and blue fingers, I give her daily medications twice a day. I have two stethoscopes, I have a pulse oximeter, I have oxygen tanks and blood pressure cuff, I have well over 10 doctors in my phone I talk to a doctor/medical supply company/insurance/pharmacy etc. nearly everyday. It is right in my face all day, everyday.
I have the incredible responsibility to take care of Ella, I have never been more proud of anything than I am of being her mom. She is a wonderful person. She is an angel on earth. Yes, she gets cranky and she isn't always perfect, but I will say with all honesty, I have never ever met a better child in my life. Sometimes I worry that people are tired of the constant bragging, the flood of pictures, and videos. I worry that people think I am exaggerating or only looking through "mom eyes" and like I think my child is perfect because she is mine. Then I realized that it's just not true! She really is that wonderful and who cares what people think about my bragging, I mean let's get real, people don't read this if they haven't fallen in love with her too! She gives me a million hugs a day and I give her about two million. She always says "excuse me, please, thanks mom, may I have____ please, she usually goes to bed great, she keeps her pantie's dry, she has an incredible memory, she is super smart, she is happy most all the time, she doesn't throw fits, she isn't loud, she is funny, she is expressive, she sings, she looooves scripture books without our pushing, she is obedient, she stays clean when she eats, she doesn't touch things we tell her not to, she loves to help and she is good at helping, she knows her boundaries in the house and follows them even when I'm in another room, she is creative, and she is my Sunshine in every way.
Living as a heart mom is hard. Sometimes it just down right sucks. I've realized that I have been in a survival mode just trying to make it through these first few years, until things get back to normal when in reality, this is my new normal. That's a big pill to swallow, it isn't going away or getting better. Ella is one of if not the "least complication" heart babies I have ever heard of, her heart defect is the MOST complicated combination of heart defects you can survive and yet she has not had hardly any complications, this is about as "easy" as our life could possibly be. I have had to learn to come to terms with the fact that we have no clue what her future holds. We have to learn a new life, I will never be the way I was before I had Ella. I will never feel comfortable in a crowd again, I will never feel comfortable at a holiday gathering, a concert, a grocery store, hugging anyone, around any children including my own nieces and nephews, I will never be ready to see Ella closer then 3 ft to someone that I don't know everything about. I will never think about the medical field the same again. How can you love and hate something so much at the same time? They saved her life! They torture her. They help her, they hurt her. She has nightmares after doctor visits. I have nightmares that we lose her. Talk about gut wrenching, that started shortly after her diagnosis and has continued. The smells of certain soaps, certain antibacterial foams, saline... all of it make my heart hurt. Memories flood over me... the first time I heard her cry and they rushed her away, the first time I got to go see her, the first time we thought we lost her, the first time we saw her open chest and saw her heart beating inside, the first tear she had, the first time I held her.... all of it comes flooding in, the good, the bad, the ugly. My heart is every bit as broken as hers.
So it's time to find the new us, the new way of life. To find what it looks like, the boundaries, the ways it's time to step out on faith, the new path. It will be normal for Ella, she won't ever know different. Yes, someday she will realize she is different, that she has a special heart, and I know it will hurt her, but it will be her normal. I know that she will hate it at times, I know that she will face fear. As her mom, I plan to do everything in my power to help prepare her for this big, nasty, cruel world. I want her to see the beauty in it, the kindness, the miracles. So, my life will never be the same, it will be forever changed, it's worth it. I'm just learning to know what that will look like, I'm okay with it. It's hard to accept, but once I have, I know that we will have a wonderful life the three of us and the many many people that love us and respect Ella's heart. Hopefully we will somehow come to embrace the changes, well I guess they aren't changes since we have been this way for the last 3 years, but somehow we have to switch from survival to living full lives this way. What that will look like is really a mystery to me at this point. I am heavily depending on our Father who has always been faithful in leading us. I am always outside my comfort zone and that is hard but good. Ella has life and so I want her to get to live it. That will look different then most, and I will be judged by the boundaries, but as long as we are together and following God's leading, we will survive, and we will live. And despite the ugly comments about her life being horrible, it's just not true. Who is to say different is all bad? We have all day everyday together, laughing, making memories, reading books, who wouldn't want that? If you still aren't convinced that she loves and enjoys life take a few hours and look at the hundreds of pictures of her huge contagious smile that she flashes all day and then tell me I'm making her life miserable and that she is not really living. She just may be loved more then any little girl ever by her mommy and daddy, she is adored by her Creator who saved her life despite the odds, and if having love, happiness, friends (even if from afar), and having hope for eternal life through Christ isn't happiness then we don't want the world's happiness.
God is so faithful, this road is hard, my heart is heavy and my pillows often tear stained, but to feel the love and joy that the Lord gives through Ella is worth every missed event, every tear cried, every weakness my body will face. God's blessings are abundant here and I am so very thankful for the 863 days Ella has already spent on this earth. May God see fit to bless us with many many many more.
Have a Merry Christmas and remember the true reason for the Season! Jesus loves you so dearly! We want to spend eternity with you worshiping Him in heaven! We are so thankful for your prayers!
Trying to put into words just how much Ella is loved is beyond imposable. The constant fear that hangs over my heart when I look at her is at times crippling. To love a child that is "terminally ill" to know that I'm "supposed" to out live her is just a horribly helpless feeling that never goes away. Learning to live with it is the only hope, the only way to live... Whenever I share the fear of not knowing how long we will have her, I am almost always faced with the response of "nobody is promised tomorrow, no one knows how long they will live, I could die in a car wreck tomorrow" It's not said with intent to hurt me and it is a true statement. But it is in NO way the same thing. As the CT school shooting is fresh on my heart as well as many others I realized that even though I am truly heartbroken for these families, I had a very different reaction then everyone else. Facebook and T.V. interviews were flooded with things like "I am holding my kids a little tighter today", and "not taking my kids for granted today". I realize it's a reality check for everyone, but it didn't change anything about the way I treated, or valued, or even thought about Ella. Why? Because everyday is like this for me. No, not everyday do I hear of 20 children dying, but everyday I see well over 100 fighting for life in the hospital fighting a heart defect. I see death weekly, sometimes multiple in a week. I am slapped in the face over and over and over with the ugly truth that this life is fragile. That unlike all these people that send their children off to school with chances of something going wrong so slim, everyday several times a day I look at my child and think is today the day? Is something going to go wrong? Heart failure, a stroke...etc.? It happens so fast. Will her heart just stop today? I struggle to write this, I hope my heart is clear on this, I am in NO way trying to downplay the suffering of the CT shooting, I am heartbroken along with the rest of America, I'm only saying that when you live with death at the forefront of everyday it changes everything. It changes you. I see an out of breath little girl with blue lips and blue fingers, I give her daily medications twice a day. I have two stethoscopes, I have a pulse oximeter, I have oxygen tanks and blood pressure cuff, I have well over 10 doctors in my phone I talk to a doctor/medical supply company/insurance/pharmacy etc. nearly everyday. It is right in my face all day, everyday.
I have the incredible responsibility to take care of Ella, I have never been more proud of anything than I am of being her mom. She is a wonderful person. She is an angel on earth. Yes, she gets cranky and she isn't always perfect, but I will say with all honesty, I have never ever met a better child in my life. Sometimes I worry that people are tired of the constant bragging, the flood of pictures, and videos. I worry that people think I am exaggerating or only looking through "mom eyes" and like I think my child is perfect because she is mine. Then I realized that it's just not true! She really is that wonderful and who cares what people think about my bragging, I mean let's get real, people don't read this if they haven't fallen in love with her too! She gives me a million hugs a day and I give her about two million. She always says "excuse me, please, thanks mom, may I have____ please, she usually goes to bed great, she keeps her pantie's dry, she has an incredible memory, she is super smart, she is happy most all the time, she doesn't throw fits, she isn't loud, she is funny, she is expressive, she sings, she looooves scripture books without our pushing, she is obedient, she stays clean when she eats, she doesn't touch things we tell her not to, she loves to help and she is good at helping, she knows her boundaries in the house and follows them even when I'm in another room, she is creative, and she is my Sunshine in every way.
Living as a heart mom is hard. Sometimes it just down right sucks. I've realized that I have been in a survival mode just trying to make it through these first few years, until things get back to normal when in reality, this is my new normal. That's a big pill to swallow, it isn't going away or getting better. Ella is one of if not the "least complication" heart babies I have ever heard of, her heart defect is the MOST complicated combination of heart defects you can survive and yet she has not had hardly any complications, this is about as "easy" as our life could possibly be. I have had to learn to come to terms with the fact that we have no clue what her future holds. We have to learn a new life, I will never be the way I was before I had Ella. I will never feel comfortable in a crowd again, I will never feel comfortable at a holiday gathering, a concert, a grocery store, hugging anyone, around any children including my own nieces and nephews, I will never be ready to see Ella closer then 3 ft to someone that I don't know everything about. I will never think about the medical field the same again. How can you love and hate something so much at the same time? They saved her life! They torture her. They help her, they hurt her. She has nightmares after doctor visits. I have nightmares that we lose her. Talk about gut wrenching, that started shortly after her diagnosis and has continued. The smells of certain soaps, certain antibacterial foams, saline... all of it make my heart hurt. Memories flood over me... the first time I heard her cry and they rushed her away, the first time I got to go see her, the first time we thought we lost her, the first time we saw her open chest and saw her heart beating inside, the first tear she had, the first time I held her.... all of it comes flooding in, the good, the bad, the ugly. My heart is every bit as broken as hers.
So it's time to find the new us, the new way of life. To find what it looks like, the boundaries, the ways it's time to step out on faith, the new path. It will be normal for Ella, she won't ever know different. Yes, someday she will realize she is different, that she has a special heart, and I know it will hurt her, but it will be her normal. I know that she will hate it at times, I know that she will face fear. As her mom, I plan to do everything in my power to help prepare her for this big, nasty, cruel world. I want her to see the beauty in it, the kindness, the miracles. So, my life will never be the same, it will be forever changed, it's worth it. I'm just learning to know what that will look like, I'm okay with it. It's hard to accept, but once I have, I know that we will have a wonderful life the three of us and the many many people that love us and respect Ella's heart. Hopefully we will somehow come to embrace the changes, well I guess they aren't changes since we have been this way for the last 3 years, but somehow we have to switch from survival to living full lives this way. What that will look like is really a mystery to me at this point. I am heavily depending on our Father who has always been faithful in leading us. I am always outside my comfort zone and that is hard but good. Ella has life and so I want her to get to live it. That will look different then most, and I will be judged by the boundaries, but as long as we are together and following God's leading, we will survive, and we will live. And despite the ugly comments about her life being horrible, it's just not true. Who is to say different is all bad? We have all day everyday together, laughing, making memories, reading books, who wouldn't want that? If you still aren't convinced that she loves and enjoys life take a few hours and look at the hundreds of pictures of her huge contagious smile that she flashes all day and then tell me I'm making her life miserable and that she is not really living. She just may be loved more then any little girl ever by her mommy and daddy, she is adored by her Creator who saved her life despite the odds, and if having love, happiness, friends (even if from afar), and having hope for eternal life through Christ isn't happiness then we don't want the world's happiness.
God is so faithful, this road is hard, my heart is heavy and my pillows often tear stained, but to feel the love and joy that the Lord gives through Ella is worth every missed event, every tear cried, every weakness my body will face. God's blessings are abundant here and I am so very thankful for the 863 days Ella has already spent on this earth. May God see fit to bless us with many many many more.
Have a Merry Christmas and remember the true reason for the Season! Jesus loves you so dearly! We want to spend eternity with you worshiping Him in heaven! We are so thankful for your prayers!
Sunday, December 2, 2012
Catch up!
Since the last update we have been super busy and Ella is getting huge and smart! In fact she often says "Ella's getting huge!" since we say it so much. She is right at 36 inches tall and around 28/29 lbs! She is wearing mostly 3T clothes and is learning more things everyday!
-Ella knows how to count to 20 (with just a little help)
-She knows all her shapes including hexagon, octagon, pentagon, arch, cylinder, cone, rectangle... and all the classics like circle, square, triangle etc.
-She knows the whole alphabet
-She recognises letters on signs on the side of the road, TV, books, anything!
-She knows what several of the letters sounds are
-She is learning to sound out words (still needs lots of practice on this one)
-She is doing great with her eating
-She is starting to "help" with a few chores around the house (picking up her toys, re stocking the toilet paper holder, helping put water in the refrigerator... She loves to help!
-Ella sings lots of songs and is really into using her imagination. I love that!
-She loves to play the drums, everything becomes a drum or a drumstick!
Since the last time you heard from us, we have been reading bedtime stories in her crib
We have been busy living life, and trying to find a healthy balance of germ exposure for Ella. It is especially hard during the flu season (please get your flu shot!) people are always sick and sick people just don't stay home, so we have to.
I am learning a lot about trusting God lately, it isn't easy, but I know it's the only way to survive this life of parenting a medically fragile child. She is His and He has gifted us with her for however long He sees fit. I am trying to learn how to live life knowing that it's borrowed time. Knowing that He loves and cares for His children and will never leave us.
We continue to covet your prayers as we live life with the shadow of Hypoplastic left heart syndrome hanging over our heads, as we watch our miracle beat the odds, as reality hits hard as she is growing, and as we know the next surgery is coming.
Ella's oxygen levels have finally seemed to level out right about 86, we are very happy with that, since before the cath they were often the low 70's! We are hoping the cath did the trick to hold her off on the Fontan as long as possible!
-Ella knows how to count to 20 (with just a little help)
-She knows all her shapes including hexagon, octagon, pentagon, arch, cylinder, cone, rectangle... and all the classics like circle, square, triangle etc.
-She knows the whole alphabet
-She recognises letters on signs on the side of the road, TV, books, anything!
-She knows what several of the letters sounds are
-She is learning to sound out words (still needs lots of practice on this one)
-She is doing great with her eating
-She is starting to "help" with a few chores around the house (picking up her toys, re stocking the toilet paper holder, helping put water in the refrigerator... She loves to help!
-Ella sings lots of songs and is really into using her imagination. I love that!
-She loves to play the drums, everything becomes a drum or a drumstick!
Since the last time you heard from us, we have been reading bedtime stories in her crib
We painted for the first time
Very proud of her painting
Ella had her first sleepover...
While mommy and daddy celebrated our 5th wedding anniversary
We made more crafts to remember some day how little she once was and had fun painting hands and feet! (notice the painted finger nails! A rare treat that she asks for constantly)
Played dress up with that big imagination and killer fashion sense :)
After asking every night to sleep in the "big one"we decided to let her and she did great!
always playing daddy's guitar
Decided it was time to give away Ella's crib, she had one last goodbye!
Then I remembered this moment and cried like a baby at God's goodness that she has been here long enough to outgrow the crib we never new if she would even see.
We set up her new big girl room and she settled right in. My beautiful big girl!
Then we celebrated thanksgiving :)
I am learning a lot about trusting God lately, it isn't easy, but I know it's the only way to survive this life of parenting a medically fragile child. She is His and He has gifted us with her for however long He sees fit. I am trying to learn how to live life knowing that it's borrowed time. Knowing that He loves and cares for His children and will never leave us.
We continue to covet your prayers as we live life with the shadow of Hypoplastic left heart syndrome hanging over our heads, as we watch our miracle beat the odds, as reality hits hard as she is growing, and as we know the next surgery is coming.
Ella's oxygen levels have finally seemed to level out right about 86, we are very happy with that, since before the cath they were often the low 70's! We are hoping the cath did the trick to hold her off on the Fontan as long as possible!
Saturday, December 1, 2012
I owe you!
I am so sorry it's been so long since an update, my coumpter decited to stop working and we just got a replacement, so I will be giving a long update with lots of pictures as soon as I can!
Monday, October 22, 2012
Because it's too cute not to share!
http://www.youtube.com/watch?feature=endscreen&v=CAkgtDcM2_g&NR=1
Ella is doing well since the cath! Her oxygen is still not quite where we were hoping it would be since the repair and she is still desating with activity, but she seems to be a little better for sure! She is usually between 78-83 but we did see her at 90 for the first time in over a year, it didn't stick around too long and she was in the 60's later in the day, but that 90 was enough to make this momma cry tears of joy! I love it when she has all the oxygen she needs!!!!! Prayers for her to sleep well at night are appreciated, she is getting up sometimes 5 times a night and really we all could use some more rest, thanks so much and I hope you enjoy the video of her talking on the "phone"!
Ella is doing well since the cath! Her oxygen is still not quite where we were hoping it would be since the repair and she is still desating with activity, but she seems to be a little better for sure! She is usually between 78-83 but we did see her at 90 for the first time in over a year, it didn't stick around too long and she was in the 60's later in the day, but that 90 was enough to make this momma cry tears of joy! I love it when she has all the oxygen she needs!!!!! Prayers for her to sleep well at night are appreciated, she is getting up sometimes 5 times a night and really we all could use some more rest, thanks so much and I hope you enjoy the video of her talking on the "phone"!
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