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. 

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!

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 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 :)
 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!

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!