Please pray for wisdom!

We made the reservations for the Ronald McDonald House today... wow it's getting close! Ella gave us a little scare this evening, her oxygen readings were in the low 70's and upper 60's After talking to the cardiologist on call he told us to take another reading an hour later and if it was still low he wanted us to bring her to the ER at Children's. Jon and I felt very uncomfortable with that, we have been told the hospital is the worst place to be because of germs!!! Now two weeks before her surgery we don't want to risk it, however, we didn't want to put her in danger! We also didn't want to have to put her on oxygen again. So I prayed that it would come up so that we could at least wait till office hours so we don't have to go through the ER. We checked it an hour later and it had come back up to the low 80's (perfect)! Praise the Lord! I will be talking to her cardiologist hopefully tomorrow, please continue to pray for her as the surgery approaches. It is important that she is healthy when she goes into the surgery for the outcome to be better! We need wisdom to know how much food she needs to gain the proper amount of weight, wisdom to know when to get her immunizations, wisdom on the timing of this surgery. So scary, thankful the Lord is in control.

2 weeks

Well today marks 2 weeks till we head down to Dallas for Ella's next open heart surgery. We were originally scheduled for the 6, but things change frequently in the medical world. So we will head down on the 11th to get settled, Ella will have testing all day on the 12th and if all looks well on the tests she will undergo her third open heart surgery on the 13th. Lord willing, after this one, we will only have one more open heart surgery to go, but unfortunately still several caths. Ella is still rocking out like a champ! She is happy as can be, she will be 5 months old on Jan. 9th! We ask that you continue to pray for her heart function, for her (and our) health, for her continued growth, and most importantly for God's timing on her upcoming surgery! I have been very anxious lately, carrying many burdens, and worrying. I fear Jon or I will get sick and not be able to be with her for her surgery, I fear that worse she will get sick and have to be postponed and placed in the hospital or worse... I fear that something will go wrong this time. I fear. I guess here lately I've been feeling like we have been so blessed this far that our blessings might just run out... It doesn't help that I have been starting to feel like I'm fighting off some sinus junk that could potentially turn into a cold and in turn I would have to stay away from Ella. That would break my heart under any circumstances, but right before she is to undergo a major heart surgery well... maybe you can imagine the fear that seems to grip my heart. Last night as I was laying in bed, headache, nauseous, and wearing a mask (for sinus stuff) All I could do was pray, asking God to show mercy. As I prayed desperate prayers over and over I heard a still small voice in my heart reminding me that God chose me for this journey, but He never indented on me walking it without HIM! I had taken those many many burdens and fears upon my own back when He is willing to carry them. So I struggled as I began to realize that I have no control and fighting for control is a losing battle. Besides I clearly couldn't handle control lol! So I laid their battling myself and my fears repeatedly giving them to the Lord and then two seconds later realizing I was doing it again... so maybe I have a long way to go :) Nevertheless God is there for me rather I utilize His help or not. After a somewhat long night of endless tossing and turning, crying baby (she crys when she drops her passy...), and a midnight dose of medication for my pounding headache, I woke up to another day. Another day wearing a mask, not seeing other humans, and battling my own fears, but somehow I feel incredibly blessed for this day! God is here to help me when I fear, Jon is home, Ella is smiling, and with no one to see and no where to go I might just take a nap :) ! So two weeks out and reality seems to sink in all the more, fear rises often, and true the risk is high, but knowing that so many of you are praying for us truly helps. Please pray for health and peace these next two weeks especially. Sometimes as I watch Ella play or sleep and my eyes fill with tears, my heart hurts for all she has endured and all she has yet to endure. I'm sad for all we have endured and what we have yet to endure. Then I feel almost guilty for being sad when everything has gone far better than was predicted. I think it's hard sometimes for people to truly understand the reality of Ella's condition. The reality is she shouldn't be here, she certainly shouldn't be out of the hospital, she should for sure be on oxygen, and her eating full feeds from a bottle by this point is nearly unheard of in her condition! Ella has never once struggled gaining weight, that never happens with these babies!!!! She has made it through four surgeries several drain tubes, cardiac lines, pacing wires, art lines, iv's, ect. never once did she have an infection... UNHEARD OF!!! She had two open heart surgeries her first hospital stay, and she was only in the hospital a month... CRAZY! Yes my friends God is good... no GREAT! So instead of being frustrated that some people think we are exaggerating the circumstances I should be full of Joy that she is doing so well!!! Friends, I realize it's hard to believe that Ella's cardiologist told Jon and I that Ella had a 20% chance to live before she was born, please don't rob Christ of the praise He deserves for the MIRACLE He performed in her life by shrinking the severity in your own minds! Ella is doing so well only by HIS GRACE AND MERCY! God has done a miracle HE DESERVES ALL THE PRAISE!!! Jon and I frequently comment on our unbelief before our own eyes! She is a constant reminder of His love toward His children! I will get down off my soapbox now, but God is sooo good! Thank you all for your constant prayers for our sweet Ella Dawn and for Jon and I, we ask that you continue praying for us all as this journey still has such a long unknown path ahead. You all are treasured, I pray that God will use Ella in your lives as you are able to witness His goodness in her life! Many blessings on your families, I pray that you will know the love of God in your own homes as well!

Please keep Emma in your prayers too, she has had some very hard days and is now waiting on a heart.

Ella's first Christmas!!!!

We hope you all had a wonderful Christmas! What a blessing it was to be home with our sweet miracle Ella Dawn!

Monumental week

                                       Snuggle time with daddy after bath and before bed!

Sweet baby girl

tummy time and lots of slobbers :)

playing in her bumboo!

she fell asleep holding her toy, so cute I had to take a picture before I put her in her bed :)

On  our way to see the Christmas lights!

I think I was too excited she was a little freaked out, I was so happy to be out as a family even if we still didn't come in contact with other humans :)

chillin with daddy before we started to drive!

She LOVED them!

Well Ella is 4 months and 6 days old! and this week is the FIRST week we haven't seen a doctor since she was born!!!!! We have made it half way through the week, and as long as Ella continues to do well we will make it!! I am so excited, I'm so sick of going to doctor's offices. I am grateful for them, but sick of them ;) So this is a very monumental week for our family! Jon and I took Ella to drive through a Christmas light display... she loved it! She was so interested she would follow each display with her little head as we slowly drove by, it was SO CUTE!!! Also Ella did so good sleeping last night, she sleeps 12 hours about every night, but still gets up to eat at 7 before she goes back to bed for her last three hours of sleep! Sometimes she wakes up for her passy but not last night!!! She is such a big girl, she also said "momma" the day before she turned 4 months!!! She was crying when she said it, but it still made my day!!! We LOVE HER SO MUCH!!! She always makes us laugh and smile! Thank you all for your prayers, please continue to pray for all of our health as the surgery approaches! Thank you Lord for Ella!!!

prayer

Please be praying for Ella's friend Emma, ( http://www.emmajanae.blogspot.com/ ) It looks like she will be going on the heart transplant list. Her heart and lungs just aren't working like they should. This is a long long road.

Please also be praying for Brittany, she is the mom of a little boy named Taylor. Taylor has one of Ella's heart defects and he has had the first two stages of surgery done, but he has been in the hospital for 7 months. We just got word this morning that he isn't going to make it.

Hearts are heavy in the Burk household today... We are beyond grateful for Ella's life and we are reminded daily that she is a miracle. We humbly ask that you continue to pray for her to thrive, as she approaches stage two of the heart surgeries. Thank you

Another Day

Well we have blessed with yet another day with our sunshine! She is such a joy! At her pedi weigh in Tues. she weighed 12lbs. 7oz. !!!! If you remember we cut her calories from 30kacal to 24kcal, apparently it didn't make a difference for her weigh in hahaha! She is almost 4 months old, that my friends is CRAZY and just NOT acceptable! How can she get so big so fast, please tell me it slows down, because if it doesn't she may just be married with kids of her own next week :/ As for an update on her daily life, she is almost perfectly normal like any other baby! She is eating 4oz every 4 hours, she eats, plays for 2 hours, sleeps for 2 hours, and she is sleeping 8 to 81/2 hours at night we get her up feed her put her back to bed for an additional 3 hours! It is working out very well! She is not rolling over yet, but we aren't too concerned since she can't have too much tummy time with her sensitive tummy (it's more important that she keeps down her meds!) She downs all her feeds in about 5 min! She is soooo very happy and alert, she holds up her head very well for laying flat on her back the first month of her life! She is slowly sitting in her bumboo for longer periods of time building up those neck muscles! She is in size 2 diapers and in 3 to 6 month clothes! Her stats are staying very stable since her last surgery! So to wrap up, she is eating like a champ, gaining weight, sleeping well,  holding her stats stable, not throwing up regularly, developing right on track,... God is still in the miracle working business friends!!!! Also her next open heart surgery that was tentatively scheduled for Jan.6th has been moved to the 13th... of course this is VERY subject to change even after she is under sedation! So we ask that you continue to pray that the Lord's timing would prevail and we would have peace whenever that time may be! Thank you all for your prayers for our little girl, she is doing wonderful, the doctors are amazed and so are we! She has gone through 4 heart surgeries and has 3 to go, we know that the Lord will be in complete control even though we are scared for what's to come.


http://www.emmajanae.blogspot.com/  This baby was diagnosed with the same 2 conditions Ella was in the womb
http://www.lyricelise.blogspot.com/  This baby had VSD and is recovering from her surgery!!
http://www.tonyandtawni.com/ This baby has 1 of the 2 conditons Ella has (HLHS)
http://www.bowensheart.com/ This baby has 1 of the 2 conditions Ella has (HLHS)

Thankful..

Thankful, that word doesn't seem to do my heart justice this year. So many things to be thankful for this year that my heart feels like it might just explode with gratitude towards a merciful God. I wanted to tell a story... Because of my sickness during my pregnancy I hadn't been able to go shopping and buy anything for Ella, then when she was diagnosed with two very severe heart defects and a small chance to live, I was torn on if I should buy anything if I got the chance. I never wanted to give up on her, but I also didn't want a room full of baby things to look at and dream about if those dreams weren't going to come true. So one day Jon and I were in a store briefly, and I saw the perfect little outfit, it was so beautiful... It looked like an outfit for an angel. It was for a baby 3 to 6 months, I wanted to buy it, but I was afraid she would never get to wear it. I made the decision to have trust that God would hold my heart regardless of the outcome... it was emotional to buy the first thing for Ella. It may seem silly to others, but I had been on the safe side of the fence up until that point, and crossing over into the full fledged planning on her to live emotionally was difficult. After buying that outfit there were many moments of tears as I held it or looked at it... wondering. I sit here with tears in my eyes and a beyond thankful heart as I can announce that Ella wore that outfit for her first thanksgiving as a happy 3 1/2 month old baby!!!! The Lord has been so merciful on our family this year! What a miracle, GOD IS SO GOOD!!!

To Get You Caught Up!

Wow what a whirl wind! We were discharged from the Dallas Children's Hospital on Friday and we were asked to stay at the Ronald McDonald house until our follow up appointment on Monday! Everything looked great there so we headed back home on Tues. We got home and unloaded, got cleaned up, and headed to bed (around midnight) had to get up at 6:30am for another cardiology appointment here this morning. Whew, we are tired! Ella is doing very well, she is up to 11lbs.13oz.!! She is growing like a wee...flower :) She has had some trouble keeping all of her feeds down since the surgery and she has been having severe gas pains for some time now. After seeing the Doctor today we decided to cut back her calorie intake from 30 cal. per oz. to 24 cal. per.oz. This should help solve  both problems, and as long as she continues to have good weight gain it shouldn't be a problem! We will continue to weigh her regularly and if we have any concerns we will of course see the cardiologist, but if all stays well we don't have to go back to the doctor till her next surgery, which is tentatively penciled in for January 6th 2011! I can't believe her next open heart surgery is just around the corner... I don't feel like we've caught our breath from the last one. Ella continues to light up even the most stressful days with her bright eyes and sweet smile, she is starting to reach out for toys and our faces, she smiles and kicks when she sees her bottle, she supports her head very well, and she loves to "talk"! Also she learned to LAUGH!!! It is seriously THE CUTEST thing I have ever heard! :) We ask that you continue to lift Ella up in prayer during this critical season. We are trying so hard to keep her well, with the doctors reminders that if she gets sick she will be hospitalized and may die. We will be spending the holidays alone this year, we are sad to miss all the festivities, but we are blessed to be able to be home with our sweet baby girl!

Ella will be going to the Children's cardiac clinic on Monday for a follow up appointment, so far she has done well with keeping her stats up since the surgery. She has had some bloody noses from the irritation the oxygen caused we think. She also hasn't been eating well... if she eats her full feeds she throws up shortly after :( We really need her to eat so she can continue to gain the weight so she will be ready for her next open heart surgery on Jan. 6th. Her color seems slightly bluer to Jon and I then we think it should be, and she has been breathing hard and fast. Her poor little heart is working so very hard. Also since babies only breath through their noise, the fact that she is so congested makes it hard for her to breath. I asked why she is so congested and they said it's because she is in a way experiencing congestive heart failure, they said the congestion should get better after her next surgery. I just am wondering why it wasn't this bad before now? Anyway hopefully she will do well this evening and tomorrow so we can get to her appointment on Monday and not have to go in to the ER any sooner! Please continue to lift Ella up as she is recovering, we are praying for no infections, her to be able to eat and hold it down along with her new meds, that her congestion would clear up, and that she can breath easier to give her heart a rest. Thank you all for your continued prayers and support for our sweet baby girl.

Just a quick update, it looks like Ella should be released from the hospital today!  She decided last night she was done with the IV and kicked it out. :) The doctors want to do a check-up on Monday, so Amy, Jon, and Ella will be staying there in Dallas at the Ronald McDonald house for the weekend.  If all looks good on Monday, they will be homeward bound!

Thanks again for your prayers, and remember to pray for Baby Lyric who is having heart surgery today.  The link to her blog can be found in the previous post.

~Aunt Kristina

prayer for friends

Well Ella is doing GREAT, we should be going home tomorrow!!! But although we are moving on out of here again we ask that you remember our friends that are still here and just arriving. Please remember to lift up all of the families here in the CICU, The little baby next to Ella's room passed away this evening... this place is sometimes a hard place to be. The little boy that was mentioned in a previous post is stable but still needs a lot of prayer, Emma, is still here making slow but steady steps and she is a cutie pie... Tomorrow morning the Nichols family will be arriving here to have Lyrics open heart surgery. Please please remember to lift their family up in prayer all through tonight and tomorrow and the days to follow for Lyric's recovery.
http://www.lyricelise.blogspot.com/
http://www.emmajanae.blogspot.com/

Surgery Complete

Ella did GREAT! Jon and Amy should be able to see her soon, and they said she should be able to go home tomorrow or Saturday!!! Everything went well and she has already been able to come off the vent with no problems. We are so thankful to God for his hand of protection over precious Ella once again. Thank you all for your prayers.

Gratefully,
Aunt Kristina

Surgery is Underway

Amy and Jon have walked Ella back to surgery. It's only 11:20 so things are ahead of schedule. Surgery should last 2-3 hours. I'll report as I hear...

Aunt Rachael

A Bit Early

I just received a text that said Ella was getting ready to go back for surgery. It is only 10:45 so that is a bit earlier than planned. Thanks for the prayers!

Strength for the Weary

Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

After arriving in Dallas past 10:00pm Amy and Jon stopped at the Ronald McDonald house to drop off their things. Ella wasn’t a happy camper. All three of them have had a long past few days. They gave Ella a bath, packed a few things for the hospital and headed there at about midnight. Originally the doctors planned on putting Ella on the 8th floor but instead choose to put her in ICU. With her condition they just don’t want to take any chances. She has done SO well thus far and the doctors do not want any setbacks. ICU meant many more interruptions and beeping machines equaling very little sleep.
In August, when Ella was born, Amy and Jon had met a couple at the Ronald McDonald house who had a little boy with HLHS. He had already had his first procedure and has now had his second as well. They didn’t do his second until he was around 6 months old. This little boy didn’t go home in between surgeries. So this family has been living in Dallas at the Ronald McDonald house for a VERY long time. Last night he wasn’t doing well at all. On the full ventilator, blood infection, etc. . Doctors had done all they could do, they seemed to be losing him. The mom was there alone. Amy sat with her through the night.
So here we are with a new day. The little boy made it through the night. But this morning doesn’t hold a refreshed rested Mommy for Ella. Amy is tired. So very tired. She is weary. Jon is tired too. Amy said she feels like she is about to break. Have you ever felt that way? The weight of your circumstances is just too much to bear? The God we serve is big enough to carry you through today’s circumstances. Because when we are at our emptiest He is at His best. He will fill you back up if you ask. Do I expect today to an easy one? No, today will hold many challenges. But I intend to do my part in holding up the arms of someone who needs help holding up their arms. Amy needs the Lord to fill her today. Please, please pray for strength for them today.

Ella’s surgery is scheduled for 1:00 this afternoon. However, we all know too well how hospital time works. I will keep you updated as I receive updates.

Thank you for praying whenever you are prompted!

2 Corinthians 4:8, 9&16-18
We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Aunt Rachael

Dallas Bound - Update by Aunt Rachael

Amy’s last post was very correct. At the end she stated they may be going down to Dallas very soon. Little did she know that would mean today…as in right now! Ella’s oxygen was still running low. The OKC cardiologist called the Dallas cardiologist and the Dallas Doctors said come tonight, surgery tomorrow. WOW! What a whirlwind for sure!
You may be wondering what surgery they are doing tomorrow. The plan is to do a procedure to help “hold Ella over” until they are ready to do the “Glenn” (the second of the three surgery series). Amy mentioned in her last post about Ella outgrowing the shunt. This Problem is what they would be fixing to help hold Ella off on the Glenn procedure. However they may end up doing the Glenn while Amy and Jon are in Dallas. Just depending on how things are going and what they feel best at the time. That means Amy and Jon are packing up as quickly as possible (it is already past 1:00pm) and heading to Dallas for what could turn into many weeks.

Here the situation is in a nut shell: Ella needs some medical attention soon. The family is headed to Dallas to see that she gets the needed attention. All involved doctors, along with Amy and Jon, have A LOT of decisions to make for what the best medical path will be in the near future.

Here are the prayer requests:
1.)Wisdom – For all decision makers involved
For Amy and Jon as they are having to pack and leave things
in order so quickly
2.)Strength – Amy and Jon are low on sleep and have lots to do in such a
short time
3.)Protection – For Ella’s body both now and during all procedures
For safe travel on the trip to Dallas

Thank you all for your many prayers on behalf of Ella. She truly has been such our little sunshine!

Aunt Rachael

doctor visit

Well it's 11:00 pm and I am just sitting down... whew. Since Ella's been placed on oxygen she has been in need of 24 hour care. She is hooked up to a machine that monitors her oxygen levels and her heart rate. This machine alarms loud and often... brings back memories of the constant beeping while in the hospital. This new way of living has been a very hard adjustment for all of us. Ella does not handle the noise piece very well and is constantly rubbing it out of place, Jon and I are having to take shifts all throughout the night. One of us watches Ella and puts her to bed, we stay up as long as we can (usually about 5 hours) then we wake up the other to switch... although we have only been on this new schedule 3 days it has already taken it's toll. I realize you all did not come to read about us, but rather Ella, so I will move on to her doctor visit. So we went to Ella's cardiologist this afternoon, she had an EKG and an echo cardiogram to determine what is causing her stats to drop. Her cardiologist said that when she originally had her shunt put in, it was a little large and she needed to grow into it. Because of the size, it was causing too much fluid so they had her on a medicine to make her pee. About a month ago they upped her dose of it. Well after the check up today they said that she has completely grown into her shunt and may in fact be out growing it already. Also it has noticeably narrowed. So they are having us stop the medicine that makes her pee, and also one of her other medicines. Leaving only two daily meds! Until the meds have enough time to get out of her system she will have to remain on the oxygen. This may have no effect on her stats, but it's worth a shot! We are going to be talking to the cardiologist on Wednesday to give a report on how she does without the meds. I am thinking she is a little dehydrated and stopping the meds that make her pee should help that as well. Right now we are trying to get Ella to at least 4 months before doing her glenn surgery, but she may not be able to wait that long. Basically we will know more in a few days... we are hoping that stopping these two meds will buy her enough time to have the surgery at the best possible weight/age. If this doesn't work, we will be going down to Dallas very soon. At that point, they will either do a cath surgery to postpone the glenn and if that doesn't work or if they feel she is ready for the glenn they may go ahead and do it. Please be praying for GOD'S TIMING in all of this, sometimes it doesn't seem right to us or the doctors, but we know God is in complete control.

update

Ella will be having an echo cardiogram tomorrow, we will know more at that point. Until then she is still on oxygen... please be praying for a clear view of her heart, and her comfort. Thank you so much!!!

Please be praying

Over the last couple weeks Ella's oxygen has been dropping. As long as it stayed in the 70's or 80's we were not too concerned. In the last three days her numbers have popped in and out of the high 60's. This evening when we checked Ella's levels they were in the low 60's and even dropped to 59 once or twice. We called the cardiologist and he said to put her on 2 liters of oxygen for 30min. and monitor her stats. Her numbers immediately began to go up. Her heart rate was rising and got up in the 170's because she did not like the piece in her nose.  Her hart rate has been as low as 80 tonight and her oxygen as high as 89... talk about extremes!!! Ella's cardiologist is talking to Ella's surgeon in Dallas and he is going to call me back tonight or tomorrow.  He said it sounds like she may be out growing her shunt a little sooner than expected.Jon and I will be up with her tonight keeping watch on her stats and keeping the oxygen in place. Please be praying for wisdom and peace during this time. I do not believe Ella is in severe danger at this point, however we may have to take some action very soon! Thank you all for your prayers for our sunshine... It's times like these we realize the stark reality of her condition.

3 months...where has time gone?

As I sit here this morning reflecting over the last 3 months I am reminded of all the times as a child I would remember my parents saying, "the older you get the faster time goes by". Thinking to myself "yeah right!" "My life is creeping by". Well They were right my life is now flying by, I guess I'm finally a grown up :) . I guess if you are a parent you understand the love I feel for Ella... only it's hard to imagine anyone loving their kids as much as I love her ;) I love her so much it hurts. I remember reading on a heart baby's blog that the mother was learning to hold on to her son loosely, those words struck me hard as I began wondering how that was possible. It made since and it's what I had been trying to do, but yet somehow could not grasp it. To hold loosely, but I love her with everything, how do I hold her "loosely"? I realize giving her to God on a regular basis is so important, it just isn't always the easiest thing to do, even though I know He will take care of her. I want to learn to hold her loosely, because that is true love. I can not protect her from everything, and she has to be able to live her life without constant fear. I want to instill in her faith and trust in God that HE will take care of her. I don't want her to live her life in fear... so I can't live my life in fear. She will see how I choose to live how I trust God and hopefully she will do the same!  You see I often struggled with fear and what ifs before Ella was born, but slowly I began to control those thoughts of doubt realizing that they were only stealing the joy of THAT moment that I did have with her! Although I was well informed of the severity, diagnosis, and percentages, of Ella's survival. I began living life with more joy and less sorrow, I am not going to lie and say I never thought about it or had fear, because there were many of those moments, but they were much less than the moments full of joy! I guess technically it was always lurking in my mind somewhere giving a slight shadow over  my sunshine, but God did an amazing thing in my life, He was able to take a VERY sick woman who had a long journey to get pregnant, carrying a child with a 20%   chance to live, and HE gave me joy during my sorrow. Now that she is here with us, daily I am blessed by her sweet sounds and constant smiles, her blue eyes and tiny fingers hold my heart, her pink toes and rosy cheeks are supposed to be a bluish grey, but they aren't. She is without doubt our miracle! God has been so very good to us. Sometimes my mind begins to wonder and if I allow it to, it always ends up in the place of "what if we lose her now? Then what? How will I even breath?" It's in these times of fear that I have to remind myself to focus on the present not the future, to enjoy the time we are given instead of worrying about losing her. You see I know that no matter how much I cherish her or how much time I spend with her or how many times I tell her I love her and give her kisses... if I lost her I would always wish I had done more. Having such a high risk baby has brought such a new perspective to me on life and how I live mine. T.V. is such a HUGE waste of time, it is ALWAYS a good time to tell someone you love them, everyday is a gift because NO ONE  is promised tomorrow, spend QUALITY time with the ones you love, ENJOY  everyday. I hate feeling as though I wasted a day, and to all you stay at home mommies that feel like you "waste" everyday at home... those are lies from Satan! You are a role model, a hero, a teacher, a nurse, a friend... the list goes on. Wasting a day means that you didn't look at the blessings in your life that day, or tell someone you loved them, or had such a bad attitude that you didn't smile... THAT  is a wasted day! Sure every job is important, but just because your job isn't seen by the rest of the world does not mean it isn't one of the most meaningful things you will ever do! So 3 months into being a mommy what do I think? I think this is the most amazing and rewarding gift I have ever been given. I thank the Lord EVERYDAY for Ella's life, often times through tears of joy as I am watching her sleep or her eyes are looking straight into mine. She is such an incredible blessing in our lives, she has taught me more in her short life than I thought possible. Ella Dawn, you are my sunshine, I love that I can pick you up and hold you anytime I want, and I love you more than words!

Ella got her RSV shot yesterday... I cried. It was awful, I just sat there holding her as she cried big crocodile sized tears feeling so helpless. A million questions running though my head, wondering if I'm doing the right thing. Praying hard for God's direction to guide me in my decisions. So so so many decisions have to be made for Ella, it is hard. On the bright side she has slowed down some on the vomiting, we have started giving her less food in the morning to help her digest it and then we just feed her sooner than we would have. It seems to be working for the most part! She is still having quite a bit of diarrhea, but we are just keeping an eye on it. She is still gaining weight, and she has officially hit the 11lbs. mark! What a chunky baby :) We have her next visit with the cardiologist on the 17th and we continue to take her to the pediatrician once a week for weighing and if we have any concerns we see the doctor. We thank you for your continued prayers, as we know much of her success is because of you lifting her up on our behalf.

doctor visit

We went to the doctor this morning, Ella is doing a little better I think. She hasn't thrown up yet this morning, but she just had her meds so we are hoping she can keep those down! The doctor thinks she must have gotten a tiny stomach bug :( Please continue to pray for her tummy to settle down, for her immune system to be strong and for Jon and I to stay healthy as well! Going to the pediatrician office is always nerve racking for me, even though we get right back to a room and leave out the back exit, their are always sick kiddos around. We are just going to keep watching miss Ella closely and if she continues to throw up her meds we will have to talk to the cardiologist and try to rearrange the plan on how much/often we give them to keep that from happening. All in all God is good and is continuing to care for our little princess!

update

The last few days Ella has been a little hard to feed, we have to watch her very closely while feeding since she has been throwing up so much. We have been watching it but haven't been too concerned considering her past patterns. However yesterday she had diarrhea almost every diaper and she threw up all of her heart medications. We can not give her more meds when she throws them up, therefor she goes without... obviously that's not good. Last night after changing her diaper around 10pm she did not have a wet or dirty diaper for the next 11 hours. This is concerning for many reasons one being that she develops fluid on her lungs which make her stats drop. That is why one of her meds make her pee, it takes the fluid off her lungs. This was one of the medications that she had thrown up. Also it is a concern because most infants pee every 3 or so hours anyway! Ella has continued to throw up and it has increased slightly, she threw up some of her meds again this morning, and she has started having diarrhea again. We are going to call the cardiologist first thing in the morning or sooner if she gets any worse. So far her oxygen level is staying stable and she is not running any temperature! Also she is her normal smiley self. Mainly I ask you to pray for wisdom for Jon and I and the doctors as we decide what is and what isn't a big deal. Some things seem so simple yet could be a big warning that something isn't right. We are somewhat confidant that she is not in any initial danger at this  point; however, we will let the doctor make that call! My main concern right now is her not getting a good dose of her medications, and I am concerned that she might get dehydrated. They informed me a while back it is very dangerous for a heart baby to get dehydrated because it is so hard on their heart. Also they told me that babies can get dehydrated very quickly so we are looking for any signs of dehydration... so far she appears good. Please keep Ella in your prayers as we try to find a solution to whatever is causing her upset tummy.

                      

Ella went to the cardiologist today. She had an EKG and an echo, everything looked great! They said that her next surgery will most likely take place right around the first of the year. We will go back on the 17th for another check up! Ella is such a trooper with all we have to put her through, but it sure is hard to watch especially when I can't explain to her why they are doing what they do. She continues to brighten every day with her contagious smile! Thank you for the prayers... keep em coming :)

Some heart babies that are close to our hearts...
http://www.emmajanae.blogspot.com/
http://www.lyricelise.blogspot.com/

http://www.tonyandtawni.com/

How far we've come!

My sick baby at 6 lbs. after two open heart surgeries

My Happy baby at 10lbs 10oz. after a miracle!!

2 more open heart surgeries to go... The Lord will never leave us nor forsake us! If this doesn't build your faith I don't know what will! I was feeling a little sad this morning about all we have yet to face, when the Lord reminded me how far He has carried us already! Praise the Lord for His gentle reminders when we question how much we can handle... we never have to "handle" it alone! Go and hug someone you love today because no one is promised tomorrow. HE IS MIGHTY TO SAVE, HE IS FAITHFUL, AND HE IS LOVE!

Ella did great with her shots this morning, mommy and daddy didn't do too bad either ;) She weighed 10lbs. 10oz. what a big girl! Please continue to lift her up in prayer as we face the unknowns of each day!

Blessed

Yesterday we had Ella's baby shower!!!! It truly was a special moment for me, so many times throughout the pregnancy I wondered if we would get the chance to shower our little girl with presents! I remember making the choice to wait to have the shower until after she was born. I was torn over the decision. I didn't want to "give up" on her, I wanted to believe she would live, but at the same time doctors kept telling me the odds weren't good. I thought having a room full of baby things would be so much harder on us if she didn't make it. So together we choose what things to do before she was born and what things to wait on. Waiting for the shower turned out great! We were so blessed by all the friends and family that came to be apart of such a celebration! God is so good to meet our needs! I can't thank everyone enough! Ella is doing well but we do have some specific prayer requests. Ella will be receiving the rest of her immunizations tomorrow, last week was hard on her and hard on us. Please pray that they go smoothly and she doesn't have any bad reactions. Also please pray that she won't have to stay in the hospital after her shots. (Some heart babies don't handle the shots well and end up in the hospital for observation for a night or two.) Also please continue to pray for our health, the flu season has begun and although Jon and I have received our flu shots many other sicknesses and coughs are flying around. We have taken Ella to church a few times now, but we both have felt a strong caution to keep her home as much as possible from now until her next surgery. This will be hard on mommy and daddy, so please pray for us to continue to have strength through this season of staying secluded. Ella's oxygen stats are doing great! We don't know the date of her next surgery yet, but it could be as early as before Christmas. Please pray specifically for the Lord's timing for this to take place. Thank you all for the continued love, support and prayers. We are forever grateful!

Well as I said before, the "worth it all" run was a GREAT success!!! Over 276 registrations, sold over 325 shirts, over 40 cities were represented and 6 states!!!! wow! Ella cleared $6300.00 - with more still coming in. What an amazing experience! We feel so loved to have so many generous people in our lives! We have put the money in a special fund for Ella's expenses! To say thank you seems so inadequate for how grateful we are to everyone that was apart of this fundraiser! God is so good, He is providing for us so faithfully! Our church is hosting a baby shower for Ella. For those that have been asking, we are registered at Target and Wal-Mart (in store and online) The shower will be held on Oct. 24th from 2-4p.m. at Immanuel Baptist Church 1451 E. 45th St. Shawnee, OK. Everyone is welcome! Thank you all for your continued prayers! I know that you all have been praying for Emma, I also ask that you pray for my friend's baby Lyric, she also has a heart defect, it is a different diagnosis but it is still such a scary situation. Her blog is http://www.lyricelise.blogspot.com/ Thank you friends!

pictures!

First off I got word that Emma Stewart is stable, but still in need of prayer. Thank you all for your willingness to lift up our dear friends.




Well Ella is a TROOPER, She inspires me everyday with her positive attitude. She has been through so much in her two months of life, and yet she somehow always brightens my day with her sweet smile. After such a good report from the cardiologist last week we decided to go ahead with her vaccines this week. We did the first half of them today and will finish them Tuesday of next week. I knew it wasn't going to be easy to watch her get her shots, but after everything she's been through I thought maybe I would be more prepared... WRONG! It was TERRIBLE, we gave her Tylenol right before her shots and she threw up and had diarrhea. After we got her cleaned up they gave her her immunizations, that needle was HUGE just for the record! Jon was there and the nurse was holding her down giving it but somehow her eyes fixed on me with alligator sized tears and a cry so hard she was silent until she caught her breath :( My eyes filled with tears as I thought to myself, "how much pain will my baby girl have to endure?" I have forced medicine down her 7 times today and I will still have to give her medicine at least 4 more times today. Every time she kicks her leg that she got her shot in she crys, it's not fair. I was torn about whether or not I would vaccinate my children, as I learned different pieces of valuable information through the years; however, after learning of Ella's heart condition and knowing that if she gets sick it could very likely kill her taking the chances on the vaccines seemed like the way to go. Sometimes I feel overwhelmed by the amount of life or death decisions I have to make so often. I cry and pray and get as much information as I can, then together Jon and I make the decision that we feel is right for Ella. Being a parent is amazing, but it is so hard to be responsible for making such important decisions. One of the things the doctors wanted me to watch for is vomiting and diarrhea. Because if she is to get dehydrated then her heart will have too much strain on it. The last week she has thrown up three times and had diarrhea 3 or 4 times. So far I am not too concerned, but we are watching her closely. She has had trouble with vomiting ever since she started eating in the hospital, so it's nothing new. If she continues to vomit I will call the cardiologist. She is still gaining weight, she is 10lbs. 4oz. Praise the Lord! This is great even if it is a little hard on mommy to see her little girl growing so fast. Thank you all for the continued prayers. As the days go by the reality that we will be going through all this again, another trip to Dallas, another open heart surgery, etc. overwhelms me and brings me to tears. Ella is a cherished gift every moment, but somehow I feel that this next surgery is going to be so much harder on mommy. Hoping that it will be easier on Ella, knowing that no open heart surgery is simple... I can only pray that the Lord will continue to give Jon and I peace and wisdom on this long road. In the meantime I hope you enjoy some of the recent pics of our sunshine!

                                       My poor baby after her vaccines today :(
                                            her leg is sore.