Thursday, December 30, 2010

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.

Tuesday, December 28, 2010

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.

Saturday, December 25, 2010

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!

Wednesday, December 15, 2010

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!!!

Wednesday, December 8, 2010


Please be praying for Ella's friend Emma, ( ) 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

Friday, December 3, 2010

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.  This baby was diagnosed with the same 2 conditions Ella was in the womb  This baby had VSD and is recovering from her surgery!! This baby has 1 of the 2 conditons Ella has (HLHS) This baby has 1 of the 2 conditions Ella has (HLHS)