Update

Ella's appointment went well today! She hasn't lost any weight and may have even gained a few ounces, it was a different scale so we don't know for sure, but this is GREAT !!!! That being said... NO FEEDING TUBE, for now anyway! Ella also had an EKG and that looked good! Our main concern right now is her diaphragm. We need God's healing hand to touch her right diaphragm, she will be on oxygen for however long it takes for it to be healed or if for some reason she starts having problems we will consider an additional surgery to tack it down. Until this diaphragm is healed we are cautioned to keep her as healthy as possible because if she was to get sick and get pneumonia it would be REALLY bad. So although Ella is still struggling to eat, she did eat 5 1/2 ounces in about 15mins. when we got home today, and it was taking 1 hour or more to get her to eat 4 ounces!!! THAT IS AMAZING! Thank you for your continued prayers for our family!

prayers please

We could really use some prayers tonight, Ella is not feeling well at all. We aren't sure what is hurting her but she isn't eating again. It took Jon and I both an hour and a half to force 3 1/2 ounces down her (lots of tears). The bad thing is if we force her too much she will develop an oral aversion and add a whole new set of complications. Tomorrow is the cardiologist appointment where we will determine if a temporary feeding tube is going to be needed. We do not want to go that route at all, it feels like backsliding, but we know the Lord is in control. On a side note I am needing your prayers for myself as well. I am battling multiple physical struggles, nothing compared to what my sunshine has faced but certainly trying for sure. I have not been handling all the stress well lately and my body is letting me have it! So knowing that I tend to get sick when I stress due to it weakening my immune system I am asking you to pray for peace, strength, and health. I am feeling so much guilt lately with all this anxiety, mostly because 1-I know I am supposed to give it to the Lord, and 2- Ella's cardiologist thinks she is experiencing stress due to all she has been through. I guess I feel like if I am stressed she feels stressed and therefore I am ultimately causing her pain! Can you say STRESSFUL! I stress more about not stressing than just about anything else ugh! Anyway long story short BIG DAY TOMORROW and we could really really use the prayers!

6 weeks post Glenn!

Well tomorrow is officially 6 weeks post Glenn!!! This is a big praise, the first 6 weeks after surgery is always the most critical! We will be seeing Ella's cardiologist on Friday, please be praying she will have gained weight! After we started her new meds and stopped some of her older meds, her vomiting slowed way down and her eating increased, although she isn't where she needs to be yet, she seems to be doing a little bit better. It may seem silly, but I am so looking forward to giving Ella her first REAL bath! She has never been able to have her whole body in water because of her incisions healing! Unfortunately Ella's diaphragm still has shown no improvement and therefore the oxygen is still on 24/7, this is the main reason Ella is still not being able to have visitors. May is the official end of the flu season, I have no idea what we could be facing at that time, but Lord willing we may be able to begin a few outings with Ella! I finally heard from Ella's cardiologist a few days ago, and Ella's blood work came back all clear! I have been so proud of Ella lately, she has been sleeping so well, she goes to bed around 8 and gets up right around 7:30a! This is great for her, unfortunately I am so accustomed to waking at all hours of the night to check on Ella, give her the passy, turn off the oxygen alarm, fix her nose cannula... etc. that I just don't ever seem to get a full night's rest. I guess at some point I will make it through a full night of sleep without waking with a fear as I quickly sit up to look at her monitor just to make sure her heart is still beating... maybe... but maybe just maybe this is the rest of forever for a heart mom. Well I'll leave you now with a request that feels so repetitive but too important to leave unsaid, please continue to pray for our sunshine, she has so much yet to face and she is just so small. Thank you, your prayers truly mean more to our family than you will ever know!

A sunshine day and a HUGE PRAISE!

HUGE PRAISE- Ella didn't throw up at all yesterday and hasn't yet today! Also she has been taking 4 to 4 and a half ounces at each feeding (almost double what she was eating!) The Doctor told us the new meds wouldn't kick in right away, so I really think it's one of the meds we stopped... and of course PRAYER!!! We had a great time this evening as a family and packed up a blanket, some snacks, switched Ella over to the portable oxygen tank, grabbed the stroller and went out to have our first family picnic!!! Thank you Lord for such a beautiful day and such a great day for Ella's tummy!! Have a wonderful day friends! Thank you for prayers, they are working... GOD IS WORKING!

p.s.
we are still waiting on the results of Ella's blood work.

update on the doctor visit

                       
We saw Ella's cardiologist today and had an EKG, an echo on her heart, an echo on her diaphragm, she had to get blood drawn, we were out for 5 hours, but she was a trooper! We don't know why she has a decreased appetite, but she hasn't gained any weight in the last 3 weeks, and she has grown 2 inches. Her cardiologist decided to stop 2 of her meds, and start her on 2 new meds because after talking to a GI doctor they came to the conclusion that she could have gastritis (ulcer) and because of this she could be developing an oral aversion. This could be causing the vomiting as well. If this is the case we may need to consider a feeding tube temporarily to help her gain some weight so that her immune system doesn't become suppressed. Dr. Ward said that when we see him on the 25th we will see if the new meds have made any difference and see if she has gained any weight, if she is doing better we can wait on the tube, if things have continued as they are now or if they get any worse we will have to admit her into the hospital to try to figure this out. Please be praying for her stomach to heal, for her new meds to work, for her to not have any problems because of the meds she was taken off of, for her to gain weight, for her to not develop a severe oral aversion,  for her diaphragm to heal, and for us to find answers! So now we just keep going and praying that this changes soon! Thank you all for your continued support.

please continue to remember Emma, Lyric, Kaelyn in your prayers as well.

Ella's Fitst Valentine's Day

Well Ella had her first Valentine's Day. After her bath I was getting her dressed and I wanted something "Valentiney" To my shock I did not own one outfit for her with hearts on it!!! She had some before but she has outgrown them all. So a pink outfit it was! Anyway she still looked adorable of course! In other news, Ella tried cereal for the first time Valentine night, she did great lol it was SO cute! I talked to the cardiologist today and he wants to see Ella tomorrow morning. She is still not eating well at all and has starting vomiting :( she isn't getting her heart meds when she throws up. She still has her paralized diaphragm, and we are praying we don't have to go in for aditonal surgery to fix it. Anyway even with the oxygen and the eating problems she is her bright, smiling self! We ask that you continue to pray for her healing and protection from any sickness!

                                    

Look who turned 6 months TODAY!!! :)

Ella's birthday Aug. 9, 2010

2 open heart surgeries 1 cath surgery

Ella 1 month old

 no lines and out of the hospital!

2 months

learning and growing at home!

3 months

Our happy girl!

4 months

continuing to get strong!

5 months

1 cath surgery, 1 open heart surgery

6 months

at home on oxygen but doing great!

What an amazing 6 months this has been and what a stamp this little girl has made on this world already! We can't believe she is six months old!!! Please continue to pray for Ella's diaphragm to heal so that she can get off the oxygen, also please pray that her cough will go away soon (this could be a side effect of her blood pressure medicine.) Also Ella is losing weight and still not eating well, we have still a few things to try, please pray that we will have wisdom on what route to take for her nutrition. She has started having some vomiting again and she is getting maybe half of the amount of food daily that she should have so we have no room to lose ANY of it. :( Thank you all for continuing this journey with us in prayer! The Lord is so merciful!!!!!

Our sunshine is growing

Ella is doing well, she is still on oxygen :( We are so ready for her diaphragm to heal, please continue to pray that it will heal on it's own quickly! Ella's eating is about the same, she is eating about 4oz. every four hours. That wouldn't be near enough if we weren't adding the extra calories, but with the extra calories we are getting by. Also some exciting news... this week miss Ella is getting her first two TEETH!!! So exciting watching her grow, but hard to believe how fast it is all happening! Thank you all for your continued prayers for our sweet baby girl :)

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!