Sunday, October 31, 2010


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.

Friday, October 29, 2010


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...

Wednesday, October 27, 2010

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!

Tuesday, October 26, 2010

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!

Monday, October 25, 2010


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!

Wednesday, October 20, 2010

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 Thank you friends!

Monday, October 18, 2010


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.

Wednesday, October 13, 2010

Praise the Lord

We took Ella to the cardiologist today and got a GREAT report! We don't have to go back for 2 weeks unless a problem occurs! We saw her pediatrician yesterday and we will be getting her vaccinations next week (I think). They are going to split up the vaccines so that it isn't too much stress on her heart. Sometimes they keep heart babies in the hospital over night after they get their vaccinations just to watch them because it is so hard on them. We are praying we don't have to go to the hospital! Ella is a whopping 9lbs. 12oz.!!! She is growing at a great pace. Just over an ounce a day! Please continue to pray for her to have good levels of oxygen until her next surgery, and also that she (and Jon and I) will remain healthy and germ free! Thank you all for the continued prayers, God is hearing our plea's for Ella's life!

Also we had a fantastic turnout for the benefit run! It was truly amazing to see God work! Leslie did a fantastic job planning this run... THANK YOU! I will post more details later when I have all the information!

Saturday, October 9, 2010

Worth It All Run/Walk
Sunday at 2pm Come join us!!!

Friday, October 8, 2010

Doctor visit update and a picture to brighten your day!

Ella did not get her vaccinations today after all, her pediatrician decided to postpone them to next week because we had to see the cardiologist today and we didn't want to put to much on Ella in one day! If you remember last week we took Ella in to see the cardiologist because she had a small cough, come to find out after her EKG and ECHO, they said things looked ok, but not great. It looked like things might be going the wrong direction and so they wanted to see her again in a week to re evaluate if she may need another surgery. We left that appointment praying and hoping her tests would look better this week... They DID! God is so good, everything looked great, she is gaining weight great, and her numbers are back down in the range they are supposed to be in. We are going to see them again in a week just to make sure things stay like this! We are so excited to have this good report today! Jon and I got our flu shots today, not fun, but we will do anything for our baby girl!!! We have had to up the dose of some of her meds due to her getting bigger. Please pray that she handles this well! Also please pray that her vaccinations go well next week, sometimes heart babies don't handle it very well because it is too much stress. Ella is truly doing AMAZING we are so grateful for every one's continued prayers... they are crucial for her recovery! Lately she has been such a happy baby she is doing great accomplishing everything that she should be. Sometimes when I look at her I want to cry, because I know it's just a matter of time before she has to go through this all again... and again. It's so hard to watch, but God has been so faithful so far I know He will never leave her nor forsake her.

Tuesday, October 5, 2010

Life should be cherished- written on 10-4-10

Eight weeks ago today was the day our miss Ella entered the world... wow! How much joy she has brought to us in such a short time! Being a mom is not at all how I imagined it would be. The things I thought would be "simple" are crazy hard, and the things I thought would be hard make me smile. I remember so well the last days before she was born, even though I had been so sick and I knew she was in danger I was emotional, because I was going to miss being pregnant. Yes it sounds crazy, being a mom kinda does that to you (no offence to mom's :) ) I guess throwing up over 350 times, nearly losing my baby twice, losing 15lbs, being in the hospital 3 separate times, staying in the hospital for over a month, and being practically bedridden all before she was even born makes you wonder why I thought I would miss any of it. I cried because even with every pain that came with it, having her in my life made everything worth it. I cried because I knew that once she was born the REAL pain would begin. It's true that watching your child suffer is far worse than suffering yourself. The night before Ella was born I was so afraid of what we were about to face, knowing that she was going to hurt and maybe not even survive. My baby girl was about to fight with everything she had for her life... and I was completely helpless. Once again I was reminded that I had to give her to God. That was so hard, I remember how vivid the feelings were inside me. The turmoil that gripped my aching heart. I remember feeling as though God had brought us so far and He had been so faithful but the other feelings that whaled up inside me were feelings of guilt. I remember wondering if I would be strong enough to love God no matter the outcome. You see I knew it was easy to praise and serve Him as long as He gave Ella to me to cherish... but what if He said no. I wanted to know I would be "ok". I don't think I could even begin to describe the love I have for this little girl. I would be curled up balling as I begged God to help me know I would be "ok" no matter what. I remember telling Him that "I would not be ok" I asked Him over and over to forgive me for the questions, I wanted to know that I would remain strong regardless but all I could do was pray for strength for each coming day. Well she is here and still I know she could be taken from me at any moment. Her heart could just give out, she could have a stroke... the list goes on, not to mention at the very least she has to undergo 2 more open heart surgeries. The truth is, I still have those questions in my head. I'm not sure if that's wrong or not, but I am continually striving to love God so much that He is the ONLY thing I need to be "ok". I guess as a parent the love you feel is in a way the most painful thing in life as well as one of the biggest blessings. It's strange but wonderful! Isn't it pathetic how hard it is to give your child to God, even though she is His already and He can do way better taking care of her than we could ever dream. lol I have to laugh at my stupidity. As the hours past the night before she was born, tears were cried, verses were read, songs were sung, and many prayers were said. I have tears in my eyes as I remember telling her how much I loved her and couldn't wait to see her beautiful face and touch her sweet hand. You see that night as I laid in bed I knew that it could be my last night with her, I was cherishing every single second. I wished her happy birthday at midnight and then we sang happy birthday to our daughter hoping that we would have many more opportunities to sing that song to her. The morning she was to be born was so unrealistic to me, I was scared to have the c-section since I was the first in my family I didn't really know what to expect. For the most part on the outside I was composed, inside I felt a whirlwind of emotions, I can't tell you how many times I wanted to grab Jon's hand and run away. I said I would stay pregnant forever if I knew she would be ok, being sick would have been a very small price to pay for my baby's life. But I knew I couldn't run anymore, it was time (after a seven hour delay). With tears in my eyes and fear in my heart I entered the operating room. Getting the spinal pretty much made me forget about everything else I'm not going to lie lol but yet the tears in my eyes were very much still there. Soon after the doctor began I remember all the sudden I couldn't stop smiling, since their was nothing I could do to stop it from happening I was going to cherish it! I looked at Jon anxiously then there it was I heard a very tiny cry and I began to laugh and tears of joy ran down my face as I realized, that was OUR baby. The baby we had worked so hard to meet, the baby that I never knew if I would get the chance to hear. I have never felt so much joy! They immediately held her up for Jon and I to see, by that time she had stopped crying and was a blueish grey color, Jon and I each reached up and took one of her hands. I was hooked, she indeed had stolen my heart. After about 5 seconds the doctor told me she had to send her away, I hesitantly said ok, I told Ella that I loved her and in a matter of minutes Ella, Jon, and a huge team of doctors were out the door. I was left there on the table still in surgery, with the best memory to relive over and over. Eventually I was moved to recovery. After several hours I was still unable to move my legs enough to get into a regular bed even though the pain was very strong (go figure lol) finally the decision was made to move me to my room on the stretcher. I wanted to see Ella so badly, I tried and tried to get up to get in a wheelchair, but I couldn't even hardly move. It was sometime around 3:30a.m before I finally tried to get some rest. After about two hours of sleep and 12 hours since she was born I was determined to get into a wheelchair. So I called Jon and my dad to come help me. It was about 7:30am on Aug. 10th that I FINALLY was able to go see Ella Dawn! I smiled and cried the entire way to the other hospital. Everyone that I saw on the way there would ask me if I was okay, I would try to tell them I was going to see my baby for the first time, but I could never say it without a huge smile and buckets of tears!  I had been up for 21 hours, had a baby, slept for 2 hours, had been up another 2 hours, and was in the most pain I have ever felt in my entire life when I went to see her. I had the post pregnancy hormones, plus I had just had a baby with a 2 severe heart defects... I was beyond emotional. I was so happy to see her but also sad, because I couldn't stand to see her and give her a kiss. My heart ached to hold her and kiss her. After a somewhat short visit I hesitantly went back to my hospital room to rest. The next day when I went to see her I was able to give her a kiss. The following day I was discharged from the hospital and I got to spend all day in her room. They let me HOLD HER for the very first time, I held her for about 4 or 5 hours straight. They finally made me put her back, but right before I did her stats began to rapidly drop, they had to "bag" her (pump oxygen for her) she was limp and looked lifeless. Fear swept over me unlike anything I had ever felt. She was fine, but I wasn't, that was a BIG reality check for me. It was at that moment that I first felt a glimpse of what it would be like to lose her now that she was part of our lives... and I was scared. I continued to improve leaps and bounds each day in my recovery, for that I was extremely grateful. It was exactly one week from the day she was born they took her back to do her first open heart surgery. The doctors let us walk with them to take her to the operating wing of the hospital, they stopped before entering the double doors and gave us a minute to tell her we loved her. You see we knew the risk of her having a good turn out with this surgery was slim, we said a very emotional "c ya later" and "I love you" and they whisked her away. As she disappeared through those doors, I clung on to Jon and weaped. Once again I was helpless... The surgery was supposed to take about 5 to 7 hours and we were supposed to get updates every hour. Well aan hour in we got an update, all was well and on track. The next hour past...nothing, yet another hour past, by this time we are getting nervous. We get a call, it goes like this: "is this the father of Ella Burk" "yes" "umm someone is going to come and get you to bring you to the consultation room and the surgeon will be up to talk to you shortly" "(silence)" "sir?" "uh, okay" "click" We looked at each other and we knew something had to be wrong, it had only been three hours. We prayed... HARD. We waited in that room for about ten minutes, but it felt like an eternity. Long story short the surgeon told us that she had more damage than he had anticipated and therefore he did a procedure that had never been done before! After he explained it all, we found out she was stable. We took a sigh of  relief and a deep breath. We had lots going on after that with her, but it was exactly one week before her next open heart surgery. All went well and she came out a fighter. The doctors all called her a "rock star" that's what they call babies that are doing great! We had a very scary time where we were on the verge of having to put her on a life support type machine it is basically a bypass machine, and it is a very last resort. After lots of prayers, and several hours we made it through without the machine. Once a nurse accidentally injected potassium instead of calcium strait into her heart... and yet she lived. She is a miracle indeed, and I am blessed daily by her life. I remember feeling like I was her mom but it felt very different then I had anticipated, I think it was the circumstances though because now it feels very natural to be her mommy! I remember one of the doctors telling Jon and I that we would need to leave the hospital for a night or we would get worn out before the end of our stay. So after being there for five days strait, we left late one night to sleep at the Ronald McDonald house. My mom and dad kept a watchful eye on Ella along with her nurse. I bawled, and called every three hours, needless say leaving Ella all night was NOT restful. I didn't go through nine months of torture to leave her now! We are a family, we stick together, apparently he underestimated this momma! Ella is a blessing far grater than I could imagine. I just told Jon the other day, even if we don't get to keep her, I'm so glad we got to get to know her! Coming home for the first time was amazing, life has been quite different then it was, but it is great! The responsibility of being a mom weighs heavy; however, being a heart mom really adds to the responsibility part. Constantly watching her breathing patterns, watching for any color changes in her skin, keeping her away from all germs, don't forget to change the diaper (one of her meds makes her go the bathroom often), give her her meds (3 meds, 2times a day 2 meds once a day,), pump, defrost milk for  her next feeding, feed the baby, watch her for on hour or so to make sure she isn't going to throw up (she is getting more calories then a non heart baby gets, and she has a hard time digesting sometimes) and the list goes on... I remember a few days after we got home we got up and were getting ready to give her  the morning meds Jon looked at me and said "we didn't give her her meds last night" me "WHAT!?!" That was a reminder that it is going to be very difficult to remember everything their is to remember being a heart mom (doctor appt. meds. ect.) I prayed and asked the Lord to remind me of anything important like that in the future. I felt like a horrible mom I forgot my child's heart medication!!! Can you say loser?! lol  Somehow we have made it to week 8 and so has she. The journey thus far seems so much longer than 8 weeks but I guess it's in a way a lifetime... Ella's lifetime and a special one at that!

Sunday, October 3, 2010

A while back we told you about the Stewart's, their baby has almost the exact same diagnosis as Ella. Their daughter Emma is scheduled to be born tomorrow morning! Many of you have been so wonderful to pray for us during this time, we ask that you take some time to pray for Scott, Sarah, and Emma Stewart tomorrow. The risk is great, but our God is greater. You have been able to see a miracle in Ella's life and I consider it a privilege to watch in expectation that Emma will be yet another miracle! Please join us in prayer for this sweet family and don't miss the opportunity to watch God work in only a way that He can! You can follow their story here

Friday, October 1, 2010

Well Ella had an EKG and an echo cardiogram to check everything. After talking to the nurse practitioner she had a small concern so she talked to the cardiologist, he looked over the tests and agreed that as of today she is fine but will need to be watched even closer. Basically the flow to one of her lungs isn't as good as they would like, and is therefor causing her numbers to rise. The numbers are supposed to stay in the low 30's, but they have risen to 50.  Because of her restrictive atrial septum they are watching her very closely. There are a few things that could cause this to happen, but as of right now she is okay. We are going to see them again for more tests in a week and at that time if the numbers have continued to rise we may have to consider a cath surgery. Our prayer is that the numbers go back down or stay the same, we desperately don't want her to go through more surgeries, then necessary. So we don't know anything more other than it needs to be closely monitored. They will make more decisions in a week based on the numbers and tests. I will keep you updated so you know how to specifically pray. We knew this wasn't going to be an easy road, but we are always disappointed with any news other then a great report. Hoping and praying for the best, thank you for joining with us in lifting up baby Ella to the Lord.