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. 

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.

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!

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!

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!

 

 

 

 

 

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!

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"!

Update post cath!

First off I want to apologize for just getting here to update all of you, Ella's blog is having a few technical problems and I have been trying to get it fixed. The counter on our homepage has shown that Ella's page has had well over 411,000 views! Somehow it automatically started over and now shows 20 something views. Anyway I can't seem to figure it out so if you have any tips feel free to comment and let me know ;) Also today is a very special day, it's Ella's Daddy's Birthday!! So we have been celebrating him today which is much deserved since he takes such good care of us all the time! So feel free to wish him a happy birthday too ;) Also check out the latest video of Ella singing http://www.youtube.com/watch?v=IWFkAcSorHs&list=UUqKCKQyW3mRs28wxQpvT3iA&index=1&feature=plcp She says "sing sing sing and make music with the heavens we will sing sing sing, grateful that you hear us when we shout Your praise lift high the name of Jesus!"

Now on to the update...

 Ella is doing great! Thank you all so much for the prayers! We are home from Dallas and Ella is recovering very well. She doesn't seem to be in any pain at all and is for the most part her normal perfect self :).

Ella's cath went great, we got to the hospital at 6:15am on Friday and got Ella admitted. She wasn't thrilled about the check in, but she loves the big train set in the lobby :) We were so thankful to have my parents there to help keep her occupied during the pre op wait. She was really good, but it was so nice to have their help. The nurse gave her some "goofy juice" to help her get sleepy and not care about what all was happening. It was sad and cute at the same time to watch her that way. She got very sleepy, laid down and said "shhhh" with her finger up over her lips. She never relaxed fully, she still kept trying to sit up and she said "all done" and "no" while we wheeled her to the surgery area. She didn't really cry though and I am so glad, my heart was breaking already. Somehow watching someone else pick up my baby girl (Who has only ever been touched be a small handful of people in her whole life) and carry her into a room where I couldn't see her or help her made my mommy heart ache. I cried harder then I cried before her last open heart surgery when they disappeared through the dreaded double doors even though the risk was far less. Life with Ella is so wonderful that even to imagine living it without her is unbearable.

collateral before plug

 Collateral after plug! Amazing!

Ella had one entry point in her right groin and one on her left side upper chest. They found one large collateral that somehow they missed via echo (probably because Ella wasn't all that cooperative during the echo). Anyway, they were going to coil it but ended up plugging it because her surgeon didn't have the size of coil he wanted (her surgeon is AMAZING). We were happy that there were only a few small AVMs (atrialvenous malformations) and that they weren't a problem. We are hopeful that plugging this collateral will fix Ella's oxygen problems and hold off her next open heart surgery for the next few years.

After the cath was finished the anesthesiologist gave her some medicine that was supposed to help her be drowsy for the next few hours and they told us we would be with her when she woke up so she wouldn't be scared. The medicine didn't work and she woke up in recovery before they would let us go back, that was hard for me to know she woke up without us, but she was well taken care of. She was not happy when she woke up at all. She had to lay flat and keep her right leg straight for the next 4 hours. Some juice, water, and 4 or 5 popcicals, Tomas the train, veggie tales, and daddy, mommy, nana, and grandaddy and somehow we made it! right about 4 hours out she insisted that she needed to go potty and would not go in her pull up so they let her get up and go... their was no stopping her after that hahaha. She constantly wanted to "walk" She walked up and down the halls until she kept desatting and her heart rate was 193, the nurse made her get back in bed. It was good to see her up and moving around even if she did look like a little rug rat with messy hair, purple popsicle all over her face and wearing only her pull up and tennis shoes. Hahaha they kept letting us know we could get her dressed, but we didn't have her clothes from the Ronald McDonald House yet.

The whole stay was hard for Ella, but I just can't say enough good about Dallas CMC. We are so happy we decided to take her there for all of her cardiology care. They are kind, helpful, and very good at what they do. We are SO thankful for the way the staff treated our girl!

Currently Ella's sats are still the same as they were before her cath, and she is still desatting with activity and her heart rate gets elevated quickly. We are hoping that with time that will improve!

Please be praying that her surgery sites heal well and she stays infection free and also that her sats come up soon!

Fun fact - Remember when Ella was 1 week old and they did that experimental surgery where they placed the bands on her pulmonary arteries to give her lungs time to get stronger since they were so damaged from her intact atrial septum and they couldn't do her planned norwood until they got better so they thought they were going to have to do a transplant? Well she was the first one they had ever tried that on and since then they have done that on EVERY baby after her that have had that same problem! They actually do the band surgery as routine now before doing the norwood! How neat is that!? We kinda think they should call it the Ella ;) But I guess in all fairness it should be called the "Forbess" since that is her surgeon's name who came up with trying it on her. Her cath surgion, Dr. Nugent, said that Ella is a super star and we couldn't agree more!! We are humbled that God has blessed her journey so much. We got the report on Friday that Ella's lungs have made a FULL recovery from the damage while I was pregnant! That is incredible, God is SO good and we are SO thankful!

Leaving the Ronald McDonald House to go to the hospital

 Checking in at the hospital

 Waiting in pre op

 The nurse carrying her to surgery

 Post op recovery watching movies 

 and eating Popsicle's 

In our room playing with Nana and Grandaddy

Walking the halls

 Cuddles before bed

 leaving the hospital (yes she was still in her PJs) 

Ella fell asleep on the way back to Oklahoma and kept smiling in her sleep, she was happy to go home! 

Recovery Report

Ella is doing pretty well.  She has been wanting to walk around a lot. The only problem is every time they start walking, her oxygen drops really low. The last time they walked her heart rate got up to 193, so they told them to just have her rest. She is very tired, but doing well in spite of it. They plan to send her home tomorrow if everything is still ok. We will wait and see if the stats get better with activity.  When she is sitting still they are pretty good. Amy & Jon will monitor it from home and if it doesn't get better they will bring her back to have it checked. The surgeon and cardiologist both thought everything looked good in her heart and lungs.

Thank you again for all of your prayers today!

~Aunt Kristina

Surgery is finished & was successful!

The surgery is complete, and Ella is on her way to recovery!  They got to see her for just a moment and she looked very peaceful.  Jon & Amy will be able to sit with her as soon as they get her all set up in a room.  They talked with the surgeon, Dr. Nugent, who is the same surgeon that did Ella's very first cath surgery the day she was born.  Today, he fixed the calateral and said everything else looks amazing! He said she is a superstar! He can't believe her lungs are in such good shape. He said they are perfect now, God is amazing! He described her pulmonary arteries and arch as gorgeous and also said he wouldn't see us again for a couple of years! :)  Another thing, the very first surgery they did on Ella where they had to stop in the middle because her lungs were too damaged so they put the bands on and tried again in a week - they are doing that now on every intact or restricted atrial septum because it worked so well! God is SO GOOD! Please continue to pray for a good, smooth recovery, especially since Ella has to lay flat & still for the next 4 hours.

Thank you everyone!

~Aunt Kristina

Update

It was the lesser of the evils.  She has a calateral.  Basically her heart is pumping about 25% of her blood around her lungs instead of to her lungs. They are going to coil it and expect this will help them hold off on the Fontan for a couple of years. They like to wait as long as they can for the Fontan. They also found a few AVM's but will leave them in for now.  All in all it's going well!  She will have to stay the night because they are doing some repair.  Please continue to pray.  The doctor is doing the repair right now. The recovery could be challenging as Ella has to lay flat for four hours.

Thank you all for continuing to pray!

~Aunt Kristina

In Surgery

Good morning, Just wanted to let everyone know that Ella is in surgery now.  The procedure could take up to 3-4 hours.  Please pray for Ella's protection during this time, wisdom for the doctors, and strength and peace for Jon & Amy as they wait.  I will update again when we have any more info.

We appreciate all the prayers!

~updated by Aunt Kristina

In Dallas

We are settled in at the Ronald McDonald house in Dallas. Ella's cath surgery will be first case tomorrow morning. We have to be at the hospital by 6:15am. Please pray for a restful night and smooth morning. Also please pray for all of the medical staff working with ella tomorrow to be careful and kind, also for Ella to have peace while at the hospital and while in recovery. It will be a hard day for all of us. Thank you so much in advance for your prayers!!

Ella's appointment

Yesterday was a long hard day for the 3 of us. On Wednesday morning Ella woke up with a rash, it began to get worse and spread. We had to take her to her doctor to make sure it wasn't contagious before we could bring her to the cardiology appt in Dallas. It got really bad Wednesday evening and I couldn't imagine dragging her through a whole day of appt not to mention the 3 1/2 hour car ride covered in hives seemed like it would be miserable. Since she wasn't running any fever for the last few days, it seemed as if it was some sort of an allergic reaction and therefore safe to bring her to her appt after all. It was quite stressful to say the least. We were up after midnight trying to get everything ready for our trip since the whole day had been filled with trying to figure out what was wrong with Ella and not knowing if we could go at all.

The next morning Ella woke up with her rash looking much better and still completely fever free. We hit the road. Ella did really good on the trip down despite her itching.

We made it to her appt at 1:00pm right at nap time. Ella was happy and playing around laughing and smiling. I was emotional, being back in that place again, all the same smells and sounds, familiar faces walking the halls. I remember being very pregnant and sick and having our fetal echo done and here I was watching my beautiful thriving 2 year old spin in the hallway with her big smile. It was surreal as I watched her spin and walk around I knew I would remember it every time I walked into that waiting room for the rest of her life. I tried to picture her at 18 standing in the hallway waiting to be seen and I smiled. I struggle to see the future sometimes and it was nice.

When they called us back we passed echo room number 6, It didn't seem possible that it had been over 2 years since I had laid there so afraid of what we may face, of what our sunshine would face...

The hard part began as we entered the room for her echo. She immediately began to cry and we knew this day would indeed be as long as we thought. She fought us harder then I have every seen she really through her first "fit" as we tried to get her to lay on the bed. We had all sorts of distractions, her favorite snacks, movies, i-phone, stickers, singing... she didn't care she was so scared. She kicked and twisted, she pushed everyone away. Jon and I knew the alternative was to put her under and we were determined to make that a very last resort since it is dangerous. Jon held down her bottom half and I held down the top half as she screamed for her life. I didn't think we would ever get through that echo, but eventually she calmed down some. They scanned her chest for a good 30-45 minutes and it felt like forever to the 3 of us. She would lay very still and calm for several minutes and then start thrashing all about when they would push to hard or make her uncomfortable. It was terrible, but somehow by God's grace we did it. Unfortunately as Dr. Lemler put it, "she is very un-photogenic"  meaning it's really hard to get a good look at her heart because of her anatomy. He told us that even if they sedated her he didn't think they could see all that they would need to see.

We had several test to have done and Ella screamed at each one (seriously didn't know she had it in her!) She is always so easy and sweet at home, I just can't imagine how scared she must have to be to act that way. :( She had to get her blood drawn, I'm thankful it was a finger stick versus an actual draw. But it was hard non the less since it still hurts pretty bad because they slice it and then squeeze it over and over to work enough blood out. Next we had to get a chest x-ray, she screamed the whole time, but at least we only needed 2 shots and it was over fairly quickly. Ella was so happy between tests, she would just smile a play with her red nose a splotchy face.

After having all the tests, we met with Dr. Lemler to discuss them. I struggle with how to update all of you when their is so much information and so many "if's". What it comes down to is that her blood results look a little high, but are fine, her x-ray shows that one of the pieces they left inside of her during her last surgery has possibly moved and she has a broken sternum wire, the echo showed fairly good function but not great in one area ,but not really a problem right now, he said he has a lot of kids with similar function doing good.

We talked all about the oxygen problems Ella has been having for the last few weeks and he said he would talk to her cath surgeon and together they would decide if she needs to be cathed (go up through her groin into her heart and work). Dr. Lemler said he thinks this will need to be done in the next 3-4 weeks unless things get worse or her cath surgeon wants to see her sooner.

We then talked about the hard part. Dr. Lemler thinks it is possible that Ella has developed something that is causing blood that was previously going to her lungs and then her heart is now possibly bypassing the lungs and going strait to her heart therefore giving her even less oxygenated blood then she was getting before which would be causing lower sats. We do NOT know if this is happening yet and the only way to tell is by cath. IF this is happening Ella will get much worse, and the only cure is doing the Fontan. The Fontan is the next big open heart surgery that we were hoping to push until spring/summer 2013 at the earliest. Dr. Lemler ideally likes to wait to do the Fontan at 4 years old although lots of kids have them around 3, Ella just turned 2 in August. We are praying HARD that this is not the problem and that her sats come back up on their own. Dr. Lemler told us that doing the Fontan this early is really not ideal in anyway, he said it would be VERY difficult for her. He said even if this is happening he might still try to hold her off until the spring even if that means she has to wear oxygen, just to get her to 2 1/2 and to get passed the flu season.

This morning I got a call from Ella's cath surgeon's office letting me know that Dr. Lemler and Her surgeon had reviewed her echo and decided that Ella's cath will be 1 week from today. I'm not sure why it is scheduled so soon, I'm hoping it's just because there was an opening and not that it's that concerning.

Some good news is that this morning Ella's oxygen and heart rate were really good! Right now we are taking it one day at a time and knowing that God is in control. Please pray with us that Ella's oxygen continues to stay up so that she doesn't need an early Fontan. We are so thankful for your prayers during this difficult time.

Dallas bound on Thursday

It started out about 6 months ago with the occasional desat into the 50's or 60's about once every other week or so, and seemed to go through phases. Then it began to happen more and more until it was multiple times an hour and nearly every time she would even walk from one room to the other.

Although we were concerned and even talked with her cardiologist, she kept acting fine despite turning blue and being out of breath and she always brought her oxygen right back up within minutes of the desat episode. As long as she kept coming right back up it wasn't quite as scary.

About 4 days of this and we took her in to be seen, she had been desatting a little less but had started having some faster heartbeats when she did desat so that was a concern of possible rhythm problems. We were instructed to buy a blood pressure cuff so we could monitor her multiple times a day along with her pulse ox/heart rate.

A few days later her heart rate began to get very high even while she was sitting still, and didn't seem to come down much at all staying in the 120's. 130's, 140's, 150's, 160. That was it, we called the doctor again and said 160 for a resting heart rate is too high. Meanwhile the last few days she had begun to have some diarrhea and low fever. Both of these symptoms can cause a fast heart rate due to dehydration. Dehydration is not only very serious with a post Glenn baby, but it is also very easy for it to happen since she needs a lot more fluid then a healthy heart kid. We realized that she was cutting at least 3 of her 2 year molars at once. So we thought the pain could also be playing a roll in the heart rate.

During all of this her previous desat episodes into the 50's and 60's seemed to be less frequent but she wasn't being monitored for that quite as much so we aren't sure exactly how often that occurred.

With all this going on, her doctor decided it would be best for her to wear a 24 hour monitor because of  the possibility of a rhythm problem. We were going to get that put on yesterday, but as we began to control her pain level and fever with ibuprofen and give her crazy amounts of fluids, It took a day or two, but she started to improve. So we decided to hold off on the monitor until we could talk with her Dallas cardiologist.

All morning Monday she did well for the most part, her fever was on and off, her heart rate was staying in the 120's/130's, and her oxygen was low 80's. By late afternoon she was having lower then usual sats and I started feeling really uneasy, her heart rate kept dropping to a more normal level.

All day today Ella's hear rate has been pretty good usually under 130, but her oxygen is floating in the low to mid 70's and that is just not where we would like it to be.

 I have contacted Dallas again, and since Ella is just not making enough improvement or even maintaining well enough for us to wait until her appointment on the 18th  we are heading down for an appt the day after tomorrow. We are really anxious for her to be seen and try to figure out the reason for her low oxygen levels.

What we need from you: We NEED your prayers!!!
1. For Ella not to be anxious (if she is too upset they will have to sedate her for her echo)
2. For protection from germs in the hospital
3. For wisdom for the doctors
4. For peace in God's timing
5. For good results and some answers
6. For as little pain as possible for Ella she will be having an echo, an EKG, blood work, an x-ray... who knows what all really.

This will be a long hard day for all of us, but especially Ella. We have seen God's super natural peace over her before in these situations and we ask that you ask God for His peace to wash over her in a way that can't be explained. Thank you all for praying. I will update when I can. We don't know what to expect right now, but we are hoping that she won't have to be admitted. I may not be able to update tomorrow, but I will try to update as soon as I can. Thank you all.

 

Ella's update

 Ella has been fighting fever for the last few days and also has been having a high heart rate and a low oxygen level. When her resting heart rate hit 160, we decided that we needed to talk to her cardiologist again. We realized that she is cutting multiple molars right now so I mentioned that to him, we both agreed that the teeth/fever could be the cause of her fast heart rate, but since she had been having the desating issues too he thought that we needed to hook her up to a 24 hour monitor. We were suppose to bring her in to get her fitted this morning. I did NOT want to hook her up since she was already in pain and I know from experience that the monitor is VERY uncomfortable also because I really think this is mostly from her teeth coming in (teething is VERY hard on some heart babies). Last night I cried and prayed, I couldn't bare the thought of doing the monitor to her right now especially feeling like it wasn't necessary  This morning when Ella woke up she was fever free and her heart rate down into the low 100's (for the first time in days!) and her oxygen was up into the low 80's for the first time in days as well, her oxygen has been floating around in the low to mid 70's.  So we decided to skip the monitor (with the cardiologists blessing) and watch her some more. Can't tell you how thankful we are that her poor little heart is getting a break from that hard fast beating and that her body and brain are finally getting a better supply of oxygen. Please continue to pray for her as we figure all of this out, thanks so much!

Prayer request

Ella has an appointment in Dallas on Oct. 18th. We are so ready to have her full care there. One thing about her last appointment that I forgot to mention was that Dr. Ward said that it is possible that she is anemic and that could cause her sat drops. So instead of doing a blood test we are going to increase her iron rich foods for now, hopefully that will help and just be a simple fix.

Prayer request for Ella as she has been having diarrhea today, she threw up, and she is running a fever. At first I thought it was all from her anxiety from the doctor (it's not uncommon for her to have some diarrhea and or vomiting after a doctor appointment due to the anxiety she had) but since she is running a fever it makes me think it is more then likely a virus of some sort. Dehydration is very serious for her condition so I'm doing the best I can to keep her hydrated. We REALLY appreciate your prayers for her to feel better as soon as possible.

Doctor visit update

We took Ella in today to see her cardiologist. To say it was difficult would be an understatement. It's not that we received terrible news, but that it was very hard on Ella and it wasn't that helpful to us. Started out as usual, went in to wait, got called back and started with the weight check (praise the Lord she is continuing to gain despite her lack of appetite!), she was apprehensive and kept saying "okayyy alllll done" in a polite yet shaky voice. We then moved on to the height check where she stood tall and the nurse was kind enough to use her had to mark her height instead of the insainly loud, scary, block that is supposed to screech in place above her little head. She was brave but I could see the fear in her eyes and her little body started to show signs of anxiety. Next we took her pulse ox, although different then the small soft cloth that wraps around her  little index finger at home she was obedient as I placed the large plastic piece that encased practically her whole finger. By this point she really had been about as calm as she could, she was quite afraid and really couldn't hold in the anxiety that much longer, her pleas to be "allll done" increased in number and in desperation, almost a begging more then a question. Last but certainly not least was the blood pressure cuff. Ella despises the blood pressure cuff with all she has, it squeezes her little arm so tightly that it leaves multiple blood blisters in streaks around her arm, the worst part about it is it is all for nothing. They didn't even get a reading. As the machine began to automatically tighten again Jon just took it off and said "no, we aren't going to take it again." I'm always thankful that he is able to step in (he had to step in a few times for me when I was hospitalized too). She was hurting and afraid by this point and we still had the main part of the visit left to go. We were directed into a room to wait for the EKG tech. A man walks in, we had seen him before. Although he isn't particularly kind he usually does a fair job. Today Ella was just having a rough time (didn't help it was during nap time) we just couldn't seem to calm her fears. I put her in my lap as I set on the exam table she grabbed hold of my necklace out of instinct as it seems to be a security to her since I have worn it most of her life. Then the man abruptly starts trying to small talk with her by giving her one of the EKG stickers... she didn't fall for that, she knew what was coming. So like someone who has never worked with children he starts putting the stickers on her as fast as he can, I guess thinking that it would just be over, but instead only added to her hectic fear. He then pulled out all the wires that needed to be attached to the leads that he had just put in place, her eyes were huge with fear and by this point she was all out in survival mode and, in her mind, no one not even mommy was on her side.He began to be unnecessarily rough with her as he put the wires in place, she was thrashing about saying "all done" and "OUCH!!" he pinched her with the clip at one point and when she began to cry harder he looked at her face and said "hey, you need to stop crying okay? If you would just be quiet then I could be done." Or something along those lines. I was furious, I was holding back the angry tears as he treated her that way (feeling mad at myself now for not telling him to just let me do it!) Finally my phone came to the rescue and was just enough of a distraction that although still crying she was still enough for a reading. It was miserable to watch.  I wanted to say, "dude, she is 2 and has more then likely been through more then you can possibly imagine, I'm sorry it is an inconvenience to you that my daughter has severe anxiety at a doctor office, but you chose pediatric cardiology as your profession so get your act together!" I didn't say the things that are on my mind and I guess I'm glad. I wish I had said something, but I know yelling at him wouldn't have gotten me anywhere. Next the doctor came in and he is overall friendly and "the best in Oklahoma" so I trust him more then the others for sure. If he had better staff I'm sure I would think more highly of him, but he is never as thorough or as educated as I would like. We told him all that has been going on and her symptoms. He agrees that it isn't normal, and that it may be something wrong, but he isn't sure what yet. He isn't overly concerned but thinks we should watch her closely. He suggested that he might have us stop giving her one of her medications and see if that helps. Here is the deal on that, the medication he wants her to stop taking, is a medication to help her right ventricle function better (aka keep her alive since that is her only ventricle!) also she has been taking this same medication her whole life, she currently takes it twice a day. He wants me to stop it cold turkey. I immediately got a feeling in my gut that I would not do that without a second opinion from Dallas. He said their is a number of things it could be, but right now he really just doesn't know. His biggest guess would be a rhythm problem. If that is the case she will need to be treated for that (most likely with another medication). Ella has had a rhythm problem in the past, one really scary night after her norwood when we almost lost her. He said it is unusual for that rhythm to return, but it's possible. So (again so thankful for a husband who speaks up) Jon told him that since are visits are several months apart now that we wanted to switch all of Ella's care to the Dallas team and that we will make the drive down there. He told him we just felt more comfortable having all of her care in one place. Since Ella will have all future surgery's/hospitalizations there we are just going to take her there every time. He understood and said he thought that was a good idea and would send a referral for our insurance if that becomes an issue. Instant relief fled over me realizing she was going to be getting better care. After this visit today I never wanted to go back... ever. On the drive home I called Dr. Lemler's office who was Ella's cardiologist in Dallas, the lady that answered the phone was kind and helpful, and within about 15 min. I had called her, hung up, she had talked to the doctor and called me back and she was in the process of starting to get Ella's medical records sent to them, not to mention I'm pretty sure she knew who Ella was from over a year ago. To put a cherry on top she said that Dr. Lemler only sees patients in clinic on Friday, but the Friday we were hoping to get in he was going to be off, so she said he would more then likely come in on the Thursday before that just to see her. Ummmmm amazing!!! I hung up the phone shouted that "I love Dallas" and told Jon "that is the kind of care our baby deserves, and that is the care we are going to get her!" I am convinced that sometimes medical staff just forgets that it may be just a job to them, but it is our whole world. Our only baby, our most treasured gift is sick, she has half a heart and we are terrified. To be treated as an individual human being instead of patient number 100,908,978 is a gift that I'm just not sure how we have managed without for the last year and a half. Thank you Dallas CMC for caring for the individual and for lifting some of the burden that I have been carrying. We don't have any answers, only more questions, but we are relieved that we will be in more capable hands soon! In the mean time I am going to continue her meds as usual (at least until I can do appropriate research) and he wants us to buy a pediatric blood pressure cuff/stethoscope to monitor her blood pressure, heart rate, and oxygen level several times a day. So that is the plan, we ask that you pray that this is a minimal problem and that Dallas will be just what she needs to stay strong until her next surgery! Thank you all for caring so much for our girl!

update

I wanted to give a quick update on Ella. We really don't have any more information at this time, but I knew you would be anxious to hear. Ella is currently still having her desat episodes when she is active at all. She is still pretty out of breath just trying to do simple things and she is turning all sorts of colors while she plays. We hope to get in on Monday to see her cardiologist, please pray that we are able to get in! It's hard to wait, but we decided to wait and see her cardiologist instead of seeing the on call card this week just because he knows her better and he is the one who usually contacts Dallas if need be. Thank you all for continuing to pray.


I have heard that Cali (after enduring 5 surgeries in a week) is currently stable and it is a miracle. She is far from out of the woods and I'm sure her family would appreciate your prayers to continue as well.

prayers please

Ella has been having some episodes today that are not fun. Her oxygen levels have been dropping into the 50's and 60's. Normal for her is in the 80's anything below 75 is concerning. We have been monitoring her all day and have been in contact with one of her cardiologists and we will continue to watch her tomorrow. Right now it doesn't appear to be any type of emergency, so that is good. This could just be signs of needing her next surgery (even with these signs it could still be a ways away) it could also be something really simple like she might be teething or getting sick. "Simple" things like that make a BIG impact on our baby. We ask that you keep her in your prayers. We know that God is in control and we try to rest in that. Ella has been really out of breath just walking in the house today and when she plays at all she will turn kind of blue and purple and her sats (oxygen) drop significantly. The good news is that after sitting for a minute or two her numbers come back up fairly quickly and her color returns to normal. Also the good news is that despite the shortness of breath and lack of oxygen she acts normal and doesn't seem to be bothered by it at all. I almost didn't post this since right now I don't know much and I don't want to cause worry to anybody, but knowing that you all are here and will pray for her, I just had to share. So please pray for her as we watch her and wait for her heart to show us what it needs. Thank you.



also please keep a little baby girl named cali in your prayers as she is in emergency open heart surgery right now and things look grim.

2 years ago today we brought her home!

On this morning 2 years ago we were packing up our bags and cleaning our Ronald McDonald house room as fast as we could so we could load up our one month old baby girl and go HOME for the first time!

 It seemed that we had been there so much longer then a month, I guess that since she had gone through a cath surgery, 2 open heart surgeries, transplant evaluation, and feeding/occupational/physical therapy, it was a lot to pack into a month. Not to mention that Jon and I had been there 2 weeks prior to her birth (Doctors orders).

The days seemed so long, everyday was full of unknown, we almost lost her on more then one occasion. But we were finally bringing our girl home, our girl that wasn't supposed to live, our girl with half a broken heart and terribly weak lungs. God is good and today we celebrate His goodness!

 This day 2 years ago is a day I longed for so badly, I just wanted to bring her home to hold her whenever I wanted to, to kiss her all day, to sleep in a bed (not a hard narrow hospital "couch") I wanted to lay Ella in her little cradle beside my bed (the same cradle that most of my family has slept in for generations), I wanted to show her the chandelier her daddy had hung over her crib...

Bringing her home didn't come without fear... what if something went wrong? What would I do without a nurse/doctor at my beckoned call? What if she got sick... even a common cold would have killed her. I was only 21 at the time, but my body ached as if I was much much older. I was tired and recovering from a difficult (to say the least) pregnancy and a c-section. I was pumping every 3 hours all through the night for little miss, who was too weak to nurse, and I had spent the last month in a hospital room standing by my baby's bed.

Oh the emotions that we faced everyday, it was such a difficult time. Thank goodness for a wonderfully supportive husband who is helpful and got up and fed Ella every night while I pumped so I didn't have to fed her then pump and therefore I got a little more sleep.

Hard to believe all of that was real, that it happened, that we have to go back, that it's never going to be over, that her heart can't be fixed, only mended. God has been overwhelmingly good to us in ways we never could have imagined. This blog has been a source of comfort, knowing that so many people are praying for our sunshine, and sharing her story. Every time her story is shared awareness for Congenital heart defects is spread and even though Ella's conditions are very rare, heart defects in general are not uncommon. 1 in 100 babies are born with a CHD. So thank you for reading, for sharing, but most importantly for praying!

Today I am watching my big girl play pretend with her baby doll and getting random unprompted hugs and kisses (favorite!) Saying "I love you" and hearing "I love you tooo!", yesterday I let Ella paint for the first time, she loved it! She is so much fun, so sweet, so pleasant to be around! She is a wonderful blessing every moment of everyday, I have no words to express my joy today. I'm pretty sure that I feel that way every single day, but, wow this feeling never gets old!

Ella girl, I hope you have enjoyed these two years at home! I hope you always love to come home! We love you and thank God for you!

On an unrelated side note, tomorrow is our 5th wedding anniversary! :) So in love with my husband and best friend. I feel overwhelmed trying to write anything about him because it just never seems enough. He is as close to perfect as they come. I can honestly say that I have never met a person that is as kind, as smart, or someone who serves as much as my husband. There is no one that I respect more then the man who has loved me in sickness and in health and who has given more of himself then I even thought possible. He truly loves me the way Christ loves the church. He is my hero. I love you best friend! Happy anniversary!

Ella's second birthday pics! ... Finally!

We had such a wonderful day celebrating Ella's life! It was a small intimate party where Ella was surrounded by people who love and care about her, people who have prayed hard for her, and we loved sharing the day with them!

We had one very special guest, Ella's dear heart friend, Emma! We love Emma and her family, Emma and Ella had a very similar diagnosis in the womb, and with the conditions that they share being so rare it was an instant connection. We have been honored to follow Emma's journey as it started just 2 months after Ella's. Ella and Emma have the same surgeon, and we have been in the hospital in adjacent ICU rooms, we shared the Ronald McDonald house too, life just brought us together! Emma has had more complications then anyone should have to face, but she has continued to fight and she is one very tough little girl! We just love that Ella and Emma got to meet face to face for the first time! Though they have had very different paths since they were born, they are both without doubt miracles!

One of my best friends made Ella's beautiful cake! She is so talented and I was so blessed that she was willing to do this for us! It was super yummy too! (Thanks Lyd!)

We are so thankful for all of you who have prayed with us throughout her life and we are asking that you continue your prayers as we enter an new phase with Ella, now that she is 2 it is very important that her immune system builds so that she will be able to have as healthy of a future as possible! Including fighting infection and sickness during her next surgery and hospital stay. This is hard on us as you can imagine to change our mind set. It has been "she can't get sick" for so long that now trying to treat her more normal (not even close to healthy heart normal, but more normal then before) is a huge change for us! Really though, the whole purpose of keeping her sheltered so far was to save her life, literally, and now she needs her immune system to be strong to save her life so even though the approach will be different, the goal is the same... do what's best for Ella and keep her alive and healthy!

That being said we have hit a big milestone, Ella is currently fighting off her first virus. She has been struggling since Thursday night. She has had fever, runny nose, coughing, sneezing, some vomiting due to drainage, and it has been hard on us all. She has done remarkable considering never having been sick before. Her sats are holding steady for the most part (although about 5-10 points less then her usual). Overall she is ROCKING it and we are so proud of her! I was so dreading this first sickness, and even though it isn't over, and it is making for some sleepless nights full of coughing, it has been reassuring that she CAN do this! That she is STRONG despite having half of a mended heart and severely sick lungs. Right now she needs prayers for this nasty cough to subside and her oxygen to stay up (it's borderline for okay). We need prayers to continue to let her fight and not to be too afraid of the future!

Thank you all for your continued support and prayers as we walk this journey and as our sunshine pioneers the way for those to come!

As you enjoy the pics from her 2nd birthday remember how BIG our God is! Remember that Ella had only a 20% chance to live, remember that her first open heart surgery failed and they did an experimental surgery on her they had never done before, remember that we had to go through the transplant application process but God healed her enough to handle the surgery again. Remember that we almost lost her the night after her second open heart surgery, Remember that she has faced 3 open heart surgeries and 2 cath surgeries, remember that she is continuing to beat the odds and fight! Remember that everyday is a GIFT!