Thursday, February 28, 2013

Quick update on today's appt

Well, unfortunately again, we don't really have any answers. The x-rays and other lung tests looked normal. They are going to try to use an inhaler 2x a day for the next 2-3 weeks, just in case she is experience asthma, even though she has NO asthma symptoms and the dr really doesn't think she has it. He said they need to rule out every possibility.  Amy, Jon, & Ella plan to travel home tomorrow, so please pray for a safe trip for them. Amy will update in the next few days with more detail.

Thank again every, for praying!

~Aunt Kristina

Prayers needed today

Hi friends,

We wanted to ask for you all to specifically pray for Ella to have peace and a calm spirit today. She will be having some x-rays done on her lungs shortly, and then heading to her appointment with the pulmonary doctor at 12:15. After everything that she endured yesterday, today will be very hard on her emotionally. Please join us in praying that God will give her a spirit of power and a sound mind, and that she will not have a spirit of fear. She is such a brave little girl and did SO amazing yesterday!

Thank you all for praying, and we will update with the results of her pulmonary tests when we have them.

~Aunt Kristina

Wednesday, February 27, 2013

Surgery is Finished!

Jon & Amy are with Ella now in recovery just waiting on her to wake up. The Dr's said that everything looks great, at this point they don't know what's causing her problems. It could be that it's lung related, not heart related.  Jon & Amy will get to take Ella back to the Ronald McDonald house tonight, and the cardiologist is working on getting Ella an appointment with a pulmonologist there in Dallas sometime tomorrow or Friday. They will also be sending a heart monitor to be used when Ella has one of her episodes, so that what goes on with her heart during an episode can be recorded.  Immediate prayer requests would be that Ella will be calm & peaceful when she wakes up, and that Jon, Amy, & Ella are all able to get some good rest tonight. Also for continued protection from sickness.

Thank you all so much for your prayers, and we will try to update again later this evening.

~Aunt Kristina

In surgery

This is Ella's Aunt Kristina updating for Jon & Amy.  Ella has been back in surgery for just a little bit now. Prayers are appreciated as the surgery takes place, for guidance & wisdom for the dr's, and peace for Jon & Amy. I will update the blog as I have news.

Thank you all so much!

Tuesday, February 26, 2013

Here in Dallas

We made it here Sunday evening and things went well for the most part, Ella was hasitent to walk into the Ronald McDonald House due to her fear of new places thinking they all will give her "owies". But with each reassurance from us that there would be no owies today, she would walk on forward.

At bedtime we were all exhausted and when we told Ella it was time for bed, panic hit her. She did not understand going to bed here and not at home. She grabbed her bedtime story went to the door and begged to go home. She was sobbing, my heart was breaking. I wondered if we had made the wrong decision to come so early and have night after night of this until her surgery. Finally Jon asked her if she wanted to snuggle with me for awhile in our bed she said she did. We decided to see if she wanted to sleep in our bed that night. Usually this would have been met with a resounding "I sleep in Ella's bed!", but this time she said yes, so the three of us snuggled in together in the tiny bed to go to sleep. Jon and I were excited, to be sleeping with her, because we miss her at night, but knew it might be a long night of little sleep.

We were right, we didn't sleep much, but as she slept with her sweet little arm over my stomach and we held hands, I just stared at her perfect profile that I could clearly see with the brightness of the Dallas night life out of our window and I began to cry. Not only was this the first time we have all slept together since Aug. 8th 2010 the night before she was born, but we were in the same place, in a room with the same layout as our first stay. I thought about my fear that night as I was awaiting her birth, wondering if it would be our last night ever with her. As the tears slid down my cheeks I thanked God with all of my might that she was here with me again. So even though we didn't get much sleep, it was a night I won't ever forget.

 At 6:30am Ella sat up and declared "I'm all done sleeping!" As apposed to her normal 8:00am wake up time. We started the day, with her asking to "walk" which we have learned is her way of handling stress and is one of her favorite past times. Although this is a healthy habit and one that will be useful in her future of trying to stay fit, it is currently not ideal considering her significant drop in sats when she is walking. We just survived to nap time, we were really tired. Ella went down without a problem in her bed and we slept right along with her in our bed. I'm really thankful for how quickly she adjusts to new surroundings! She has been sleeping well and in her bed ever since.

We never did have much snow in the path of what would have been our drive, but we are still so thankful that God made the way for us to come down here early. We would have been so very exhausted had we come down on Tuesday, now we have settled in and had lots of time to rest! God is watching out for us!

We are scheduled to report at the hospital at 9:30am and I'm not exactly sure what time the actual surgery will be, but it will be sometime after 11am. Tomorrow is really the hard part. Tomorrow we will send Ella into her 7th heart surgery, a stranger will carry her out of our view and we will have no control over what happens for the next few hours. Thankfully I am sending her in to a cath surgeon who I have so much trust in, and I know that God is in that room with her. Tomorrow they will look to find what has been causing so many problems. Tomorrow they will decide if her next open heart surgery is in the next few months, or very very near. Tomorrow Ella will be in pain, terrified, and exposed to countless horrible viruses. Tomorrow we put every ounce of hope and trust in God for strength to get through this next step.

We are humbled to ask you yet again for a flood of prayers on our sunshine's behalf. She means everything to us. We thank you all.

Sunday, February 24, 2013

Little change in plans

Instead of heading to Dallas on Tuesday, we are heading out today, we will be leaving shortly. Ella is still scheduled to have her cath this Wednesday the 27th. We are supposed to possibly have some bad weather in Oklahoma and just didn't want to risk missing her surgery due to bad travel conditions.

We will be staying in the Ronald McDonald House. It was truly a blessing that we got in, they told us they are very full and had no room for us. They told us the waiting list was 10 families hoping to get in tomorrow, and 8 families hoping to get in Tuesday! Then they told us they had their housekeeper call in sick, so we couldn't stay there. Jon talked to them and explained the importance of us having a healthy housekeeper due to Ella's heart and offered to clean our own room (we would clean it when we get there anyway.) they discussed it and when we talked to them again, they told us one of their volunteers had said they would prepare a room for us!! We are so thankful!

Please be praying for safety as we drive, safety from the germs that will be ALL around us, peace and wisdom for us as well!

Ella will be facing her 7th heart surgery this Wednesday, we can't put into words how hard this is, but we find strength in knowing who holds the future! Thank you all!

Friday, February 15, 2013

The next step in our journey...

I have yet to post here, since I've been waiting until I had all the information, but Ella is having some complications.

Ella's oxygen is often in the 60's and some 50's. Basically if she is standing and moving at all, even just walking, she is in the 60's. If she plays more normally, she can hit the low 50's. This is very low, but the good news is that if she is sitting down, she is still hitting as high as the 80's. She is not on oxygen at this time since she is still bringing her numbers up with rest.

The plan is for us to head down to Dallas Feb. 26th and then for Ella to go into a cath surgery on the 27th. That is the same surgery she had back in October. This will hopefully give us some answers. We are suspecting that she has developed another collateral, if that is the case we will either get it plugged and hope to hold off her next open heart surgery for a few months, or they will leave it and we will proceed with her open heart surgery, not right then of course, but in the very near future.

Ella's cardiologist would really like Ella to be 4 years old for this next open heart surgery, however at this point we are realistically going to be lucky to make it to this spring/summer before needing to go ahead and have the Fontan (the name of the surgery).

We are trying our best to trust God's timing for her surgery. We would obviously like her to be the "ideal" age and weight for this surgery and going in small isn't what we were hoping for, however it's where we are so, we are going to have to roll with it. We know that God's ways (and His timing) is not ours, so we have no choice but to trust that He is in control.

I'm not going to lie, this is a very hard time. We know the next several months are very likely going to be some of the hardest months of our lives. It is emotional to even think about best case scenario, because we are talking about sending my two year old daughter into her 4th open heart surgery (and no, it doesn't get easier), even if it goes perfect, it's never something you want to face. Then you add the fact that the complications can be very difficult after this surgery and you realize that you could lose her. That the morning before surgery it may be the last time you hear her voice, you realize that even if she makes it through the surgery, it might not work and we may have to get a transplant... etc. oh the fears are endless and really can't be dwelt on without crippling you, so we focus on the here, the now, the smile on our sunshine's face as she sings songs from Cinderella and Danial tiger's neighborhood.

After her cath surgery on the 27th we should have a better idea when her open heart surgery will be and I'll try to update here as soon as possible when we know.

-Right now we appreciate prayers for Ella to stay HEALTHY (we are going back during the flu season and it is not ideal at all!)
-For Ella to gain weight before her open heart surgery
-For Ella's heart friend Emma who isn't feeling well
-For God's timing in all of this
-For her cardiologist and her cath surgeon who will be making the decisions on when surgery is needed
-For us all to have peace
-For safe travels the 26th

We thank you all for your prayers and support during this difficult time, we knew this was coming since before she was born, but you just can't prepare for something like this.

Friday, February 8, 2013

CHD awareness week!

February 7-14th is CHD awareness week! I'm slacking a little in my blogging, we have had lots going on, but I was determined to update this week! Here is last years post! (

1 out of 100 babies will be born with some sort of Congenital heart defect.

That's 1%. 

Ella was that 1. (although with all of the other details to her heart defects she is more like 0.00001%)

Your child could be that 1.

I'm not trying to scare anyone, because I don't want you to live in fear. But thinking "that just won't happen to me, to my child" doesn't mean that it won't. I was completely shocked because I didn't even know what a CHD was. The first time I heard the term was when I was 21 weeks pregnant being faced with the harsh reality that this would be part of my child's life, and I was being offered the chance to end her life.

Often times defects are missed via ultrasound, even something as big as missing half a heart! If you are pregnant I beg that you ask for a pulse ox test on your infant within the first 24 hours of life. Despite all other tests looking good this is a great way to check for a heart defect. The great thing about this test is that it is painless, simple, and takes only a few minutes tops. Here's the thing, it won't be offered to you and won't be done without your request. I know it might put several of you out of your comfort zone to ask a nurse for a test that you don't know much about, and to have them act like you are stupid for asking, but Please do it for your baby.

I remember the day like it was yesterday. I walked into my ultrasound sick as all get out from my very hard pregnancy thinking that being that sick was so hard. Everyday I struggled to survive, little did I know life was a walk in the park compared to what was coming. This was actually my 4th ultrasound since we had almost lost her before. I, being a first time mom, and a little lot naive, all I could think about was if I was having a boy or girl. I didn't think about baby being healthy, after all we had checked on the baby so many times before I guess I assumed we would have already known if something was wrong. In fact we had already been specifically bragging on her strong heart that had been visible earlier then most.

The tech wasn't particularly kind, but I didn't mind, I was so excited! I remember her making some off hand comment about how annoying it is that parents come in excited about the gender never thinking about the health of their baby. That shot a feeling of guilt/fear right through me. I thought to myself "oh my goodness something could be wrong? Why didn't I think about that?" With the ultrasound revealing a HEALTHY baby GIRL we were thrilled to pieces. It wasn't until the next day that things began to unravel.

The next day I received a call, a nurse saying they had found an abnormality on the ultrasound concerning the heart and I was being referred to a perinatal specialist. The appt. would be in 10 days.

At that appt. we were told that our daughter had a Congenital heart defect called Hypoplastic left heart syndrome, essentially that meant she had only half of a functioning heart. She was given about a 75% chance to live with at least 3 open heart surgeries in her first 3 years of life. We were then offered to terminate the pregnancy, that hurt more then the CHD diagnosis. For a doctor or anybody really to find my child less then worth life because of an abnormality is just wrong. We knew she was worth fighting for! God had a purpose for her!

It was 2 weeks later that we met with a pediatric cardiologist who did an echo on our baby via my belly. After the echo was reviewed he and the perinatal specialist stood at the foot of my bed and discussed a bunch of things with one another about our daughter's heart. Jon and I just looked at each other and shrugged. Then the cardiologist hit us with some sort of description of what we already knew Ella had and then when on to say that they actually had found another defect that makes her extremely rare and extremely hard to treat. He gave her a 20% chance to survive.

It's been a long hard road since then, and many of you have followed the blog since then as well. But today Ella is 2 1/2 years old, She has had 6 heart surgeries, she has had oxygen, feeding tubes, cpap, ventilators, meds, tons of pokes... etc. but she is ALIVE and she is THRIVING! She has surpassed all the expectations and is continuing to surprise her medical team in Dallas.

So this week I desire to spread HOPE! There is life after CHD diagnosis... it's hard, but it's beautiful and oh so VERY worth it all!