Friday, November 26, 2010


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!!!

Wednesday, November 24, 2010

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!

Saturday, November 20, 2010

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.

Friday, November 19, 2010

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.

Thursday, November 18, 2010

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.

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

Wednesday, November 17, 2010

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

Tuesday, November 16, 2010

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.

Sunday, November 14, 2010


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!!!

Saturday, November 13, 2010

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.

Tuesday, November 9, 2010

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!

Saturday, November 6, 2010

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.

Tuesday, November 2, 2010

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!