Update on Ella Dawn after doctor visit

We saw the cardiologist this morning and had all the normal testing to try to figure out why Ella has a sudden need for constant oxygen. The good news is their isn't any fluid around her heart or lungs, the bad news is she will be on oxygen for awhile. During Ella's Glenn surgery the right diaphragm was damaged and is now paralyzed. We knew this had happened and were told about it shortly after the surgery, you may remember I even mentioned it on here as a prayer request back then. They said at the time that it shouldn't cause any problems, and that in a matter of about 6 weeks it should heal on it's own and work properly again. Unfortunately it is now causing problems, this is putting pressure on her lungs making it harder to breath, and this makes her breaths short, fast and shallow. Also it makes her have a grunting noise and cough quite a bit. We are just almost 2 weeks post surgery now so we should be looking at about 4 weeks more of oxygen. We are not sure why she didn't need oxygen before and she does now, but as long as it doesn't get worse this is ok. With this new discovery comes a new prayer request, it is important that she does not get pneumonia. Again we were strongly cautioned to keep miss Ella healthy. We are praying that her diaphragm will heal on it's own sooner rather than later so that we can get Ella off of the oxygen as quickly as possible. Also Ella has still not been eating well so she hasn't been gaining much weight and we think this is partially because of the damaged diaphragm so we are going to try to up her calories to 30 from the 24 she was getting before. Please be praying that this does the trick, and that her stomach handles this change well with minimal vomiting. Thank you so much for your continued prayers for our family!

Doctor tomorrow...

I talked to Ella's cardiologist this evening, and he wants to see her tomorrow instead of Friday. I will post when I know more, please be praying for the appointment to go well tomorrow. They will be doing an echo cardiogram and also some x-rays. We are hoping it is nothing major (we don't think it is!) Hopefully we can get her off the oxygen and back to her thriving self soon!

back on oxygen :(

Ella was placed back on oxygen around 10:30 last night. Her stats were slowly dropping and were staying in the danger range so back on the oxygen she went. Immediately her stas came back up. We are not sure why this is happening, she could have some fluid on her lungs. I am going to try to talk to the cardiologist today. Thank you all for continuing to pray.

prayers please

Ella's stats dropped to 51 tonight, we had to put her on oxygen. She is resting now and we have weaned her off the oxygen. Please keep her in your prayers as she is still working hard to breath. Just another reminder that continued prayers are needed, things can change in a heartbeat...literally. Thank you. So grateful to be able to know so many are praying for our little girl. Praise the Lord that He is caring for her!

Ella's new trick!!!

So at 5 months old.... just 9 days after her surgery...she decided to sit up all alone!!!! It was just so so so cute! She was like "what is the big deal mom?" lol oh how I love her!!!

We're HOME!!!!!

PRAISE THE LORD! We have come home once again by the Lord's mercy! We are in awe of His power, blessings, and grace! Ella is doing very well, she was supposed to have BAD headaches for several days up to two weeks of solid headaches. Ella only had a headache for the first night!!!! The NP said that in her entire carrier she had only ever seen one other baby not have headaches!!! We are so grateful she is not having to endure such severe pain all day long! As Ella's incision is healing she is experiencing LOTS and LOTS of itching :/ poor baby. Ella's blog is getting close to 150,000 views! This is absolutely mind blowing to Jon and I! We are humbled, we are grateful... we are lost for words by your love and concern for our sunshine! During this season of joy for our family in Ella's victory of going through her third open heart surgery with flying colors, we are feeling sorrow for those who's babies are still fighting such a difficult fight. When we went to Dallas for our first visit with the doctors that would eventually save our sweet Ella's life, I was in my third trimester of what I can only describe as a severely difficult pregnancy. We sat through hours of testing and meeting after meeting with doctors. They told us all the things we had already been told, they told us Ella was going to be born without the left side of her heart (HLHS) They told us that she was going to be born with the right side of her heart broken (RAS) they told us that this combination of congenital heart defects is the MOST SEVERE heart defect that a baby can survive. They told us that the oldest survivor of these two conditions was about 5. They told us that this was going to be hard, long, and in the end they didn't know if we would leave with our sweet baby girl in our arms or not. They told us that this combination is very rare and after doing the numbers it's about 1 in 200,000. We were that 1, why or how we may never know but that's ok. They told us that out of all the babies that come to the Dallas children's from all over the world they only see maybe one of these a year, in 2010, they said that Ella made number 4! We asked how the other three did, they told us 1 did well, 1 ended up needing a heart transplant, and 1 died. We thought ok, 2 out of three! Little did we know that since then we have heard of two babies with these conditions other than Ella, Ella is doing well, one is on the heart transplant list, and one died. We don't know why God chose Ella for the "easy" road, we are grateful even though at times we feel guilt. We are very aware we did nothing to deserve Ella to do so well, and we know that it's not because of our love for her is more or that she is getting more prayers because these other babies are DEEPLY loved, cared for, and prayed for by many. We know that our road with Ella is going to be a mystery, we know that she may not have a long life or she may end up on the heart transplant list, but for the time we have had and will have and the quality of life that she has had makes us so very very grateful! Although Ella is through the Glenn and we are officially past the biggest part of danger of death for her, I have found myself emotional lately. Ella's next open heart surgery when she is around 3 will be a bigger surgery than the Glenn but easier than the Norewood. I am full of Joy but I can't help but think... we are still not done. The thing is even after all of the surgeries Ella will still not have a whole heart. It will still be broken... she will always be on medication, she will always be limited in activity, she will always be in more danger when she gets sick, she will be in and out of doctors and hospitals forever, she may not be able to have a family, she will be at high risk for a stroke, her heart could just get tired from working so hard and quite. She has a significantly less amount of oxygen than the rest of us, if we had the amount of oxygen she gets the doctor told me it would feel like we were suffocating... but it's all she knows. All these things will just be her life, I wish I could take all the bad and hard stuff away. I'm her mom, I want to fix it... I can't, the most skilled surgeon can't... they can only make it work the way it is. God has been so very faithful this far and I know that He hasn't brought us this far to leave us, but sometimes the future is hard to face. Living today and not worrying about the future is the only way to be a heart mom. I'll tell you one thing for sure it does make me treasure every single smile, sound, touch, heartbeat... thank you Lord for Ella's life, thank you for her quality of life, for her sunshine. Help us to trust in Your plan for all of our lives, help us to enjoy and not to worry. Comfort those who are walking in similar journeys. Help us to know how to best show Your love to others who are hurting, help us to live everyday the way You intended. Help us to grow more like you every single day. Give us wisdom on when and where to bring Ella. Place Your angles all around her, shield her from pain and sickness. Help her to always know that she is here for a purpose, that her life is a miracle. Help us to be the parents You made us to be, we are beyond thankful for Your mercy...thank you. Amen.

doctor visit

Ella had her post op visit today, everything looked good! She had x-ray's and blood work, she got stitches removed and lots of tape, but she was a TROOPER!! Also she had gained a little weight and the doctor didn't seem concerned that she is only taking about 4 oz each feeding, that made me happy! Right now Ella seems like her chest is itching very bad, she claws at it and wiggles and crys... it's so sad. Prayer requests continue to be her pain level, her chest to stop itching so bad, her appetite, health, and for Ella to stay infection free! We are heading home tomorrow please pray for a safe trip home! YEEEEEEHHHAAWWWWWWW!

Please say a special prayer for all of the heart babies in the cardiac ICU especially Ella's friend Emma... Lots of sickness is going around :(
Thank you for praying!

update

Ella has her follow up appointment tomorrow morning at 8:30. Please be praying for her, it will be very uncomfortable. Also please be praying that she starts eating better, she is still not eating well at all. I don't know how much room the doctors will give us weight loss wise before they insist on an NG tube. She is doing very well considering, but still needing lots of prayers! Please pray specifically against infection and sickness, as well as pain management and her difficulty eating. If tomorrow's appt. goes well we should be home bound on Friday!!! So ready to get home and get Ella back on some sort of schedule! We truly can't thank everyone enough for the continued prayers, we know now that the surgery part is over Ella may not come to mind as often. Please don't stop praying for our sweet Ella Dawn, she has MANY hurdles yet to face! Thank you all so much!

Also please remember all the other sweet heart babies that are still here fighting to get well!

Ella did pretty good here at the RMH last night! It is so wonderful to be out of the hospital, but we are ready to go home. We have a follow up appointment for Ella on Thurs. so we will most likely head home on Friday! Ella was in her car seat while we ate dinner last night, and when we took her out she was in a lot of pain for awhile, it was so sad. :( She seems to be doing well this morning though! We thank you for your continued prayers! The Lord is so good!

Ella continues to thrive!

 We are thrilled to say that it looks like we will be discharged first thing tomorrow!!! We were possibly going to get to go back the the RMH today but long story short we're not. We are SO READY to get out of here I can't help but feel like she is in danger of getting sick while we wait to leave. The doctors themselves told us that this is THE WORST PLACE TO BE! Anyway even though Ella is eating well, not on oxygen, or fluids, in fact she needs NOTHING from the nurses... we are still here ugh! I guess it's ok since we originally had prepared for two weeks and it has only been four days! I guess I am just being impatient. So ready to get this little girl back to a "germ free" environment! Knowing that she is doing better than anyone they have seen here in Dallas with her conditions make me in awe at the power of prayer! I am thankful for the Lord's mercy and I am so very proud to be her mommy!!! Thank you all for the continued prayers, they mean so much to us! We are humbled to have you all on this journey with us!

P.S.
I was only going to post one pic. but I just couldn't decide she is way too cute!!! :)

Pictures!

Daddy saying "see ya later"

Walking to the surgery wing

first night post Glenn :(

second night post Glenn :)

first drain tub getting pulled :(

third day post Glenn, on the recovery floor!

Third day post Glenn snuggles :)

third day post Glenn smile :)

Daddy is still her hero third day post Glenn!

happy to be feeling better!

just as cute as ever!!

"Thank you Jesus!"

Sunday update

Ella is improving everyday, she is still in much pain as you might imagine 3 days after having open heart surgery! She is resting now, and this morning they pulled her pacing wires, and her last drain tube (hooray!) She is still not eating well, the doctors are pushing for her to eat more, and have briefly mentioned "feeding tube" if she doesn't start eating better soon. I however am not the least bit concerned yet, she hasn't thrown up all through the night or this morning, and she is taking about 1 to 2 ounces every four hours. She is smiling more today and kicking and playing with her hands! She reaches for Jon and I's faces when we talk to her, I can't tell you how good it is to see her feeling a little better! Please continue to pray that her right diaphragm that is elevated will get better on it's own soon, please pray that she will be as pain and headache free as possible, please pray that she will have a good appetite, and that she continues to stay healthy and infection free!!

Good night's sleep and Prayer requests

The night was good-they all 3 slept all night!  This morning they took out one drain tube and the ART (neck) line.  They will be moving her out of ICU as soon as a room is available.  Thank you Lord for your mercies and Ella's recovery so far!

Prayer Requests:
-They had to give her morphine to take out the drain tube and it is making her tummy upset.  She is spitting up quite a bit.  Pray she will begin eating better-so far she isn't eating too well today.

-She is still on 100% oxygen and 3 liters of pressure.  Pray for her to be weaned off that.

-She finishes her antibiotic this afternoon.  Pray against infection after that.  She will be out of ICU on the regular floor, so she will be exposed to more germs.  It is still very important that she not get sick!

-Her right diaphragm is elevated.  This should take care of itself-pray it will!

-She is still on a lot of lasix to help empty her bladder.  Pray they can begin reducing that.

-They are stopping another pain medicine today so she will only be on Tylenol for the pain.  Pray that Tylenol will do the job.

Again, our family thanks you all so much for your prayers, God is hearing them and answering them!  Praise the Lord!  We appreciate you praying for these requests for sweet Ella today. 

~Aunt Kristina

post straight from Ella's ICU room 9:30pm

This is Ella's mommy I have a quick update that is important enough for me to take the time to tell you. Ready?... SHE SMILED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Jon and I both got to see her beautiful smile we have come to cherish over the last 5 months! This was her first real smile since her surgery! It wasn't quite as big as the one in the picture, but it was just as beautiful, she is so strong, oh how I love her! I saw a glimpse of her sunshine and I had to post!!!! We love you Ella Dawn!!!!! We can not thank everyone enough for the prayers and support, please keep them coming, God is working!!!

Post-op pictures

Here a couple post-op pictures of sweet little Ella.  Please continue to keep her in your prayers, especially her pain levels.  Thank you!

Some pre-op pictures

Here a few pictures that were taken yesterday morning just before they took Ella back for surgery. The latest update this afternoon, they were able to remove Ella's cardiac lines, Amy fed her a couple ounces of breastmilk, and Ella was finally getting some rest!