Wednesday, July 7, 2010

update 7-7-10

Well we went down to Dallas yesterday to meet the pediatric cardiologist and the obstetrician. We also had an hour and a half long echo cardiogram. After the echo cardiogram we met with the cardiologist to discuss the plan. After Dr. Lemler had thoroughly examined her heart he told us that is a very good thing that we are planning on being in Dallas because her case is very severe. He told us that she does have hypo plastic left heart syndrome and the restricted PFO, which we had already been informed of this. He told us that her PFO was very restrictive and this was causing her pulmonary arteries to bulge, he said they are the worst he has ever seen. Then he said because of the bulging she may have unrepairable damage after she is born, in that case she would require a complete heart transplant. We will not know what the extent of the damage is until she is born. This was of course dis hearting to hear. Dallas has had about 7 to 10 of these cases but they couldn't give me statistics because they have no idea how the babies will do long term since being able to cure a baby with both conditions is so new. We are grateful that medical teams have made the progress that they have, because now we have some hope. After our appointment with the cardiologist, we met with the new obstetrician and had an ultrasound done just to check on everything else, she is one big baby :) she already weighs 5lbs. 9 oz.!! I am guessing at this rate she will be 9lbs. something when she is born, but that's just a guess! I am not looking forward to the massive amount of growing I will be doing over the course of the rest of this pregnancy. But on the up side, everyone got a big grin when they heard her weight and all the Doctors and nurses agreed and said the bigger the baby the better! Originally they were going to do a c-section at 37 weeks, but the doctors in Dallas agree that she needs to develop as close to full term as possible so that she only has one battle to fight, with that being said we have a c-section scheduled on Aug. 9th at that time I will be 39 weeks pregnant. However because of the high risk of my case Jon and I will be moving down to Dallas some time in the next three weeks and will remain there until we bring our sweet baby girl home. We are unsure how long our stay will be but it will most likely be two months if everything goes perfect, and it could be several months if there are complications. We are beyond grateful for everything that the Lord is doing through our friends and family, we are humbled by your prayers, love, and support. Even though this is the hardest thing we have ever had to endure God is leading our every step. I am so happy to report that everyone of the staff members that we met in Dallas from the Secretaries to the Doctors were so supportive and helpful. This was a blessing to us because we have a team of doctors here already so switching all our doctors was intimidating to me to say the least. I have one more appointment with the perinatal specialist here and one more appointment with my obstetrician before we move to Dallas. July 27th will be my next appointment in Dallas and than sometime between then and Aug. 9th Jon and I will meet with the surgeon and take a tour of the facility where Ella will be cared for. We know that Ella is in the Lord's hands, but for me right now it's a constant state of fear and emotion. Being in Dallas made it all seem more real somehow, more severe. Having so many doctors and specialist all telling me "this is bad", and "this will be the hardest thing you will ever go through in your life". Knowing that Jon or I won't be able to hold her makes my heart sad especially since they don't expect her to make it though the first surgery. It's one of those things that if there was no chance I would just hold her until her last breath, but knowing there is a chance I can't take that away from her, but after everything that has happened I just want to hold her in my arms and look into those eyes and have her look back at me. I want her to know that I love her and that I am there with her. Over the course of this pregnancy their have been many trials and so much pain both physically and emotionally, but I can't help but think about if she doesn't make it, and the pain I have felt for so long now will only be the beginning of the most pain I have ever felt and that pain will last for the rest of my life. I realize I'm not the only one to ever lose a child or even to lose someone prematurely, but right now the future seems unbearable. I am trying to have hope but when everything around you says it's not likely fear seems to somehow grab hold and hang on for dear life. Please pray that Jon and I will remain strong through this time, that in the next 5 weeks we would be able to cherish every second with our baby girl, that my sickness would subside, that we will have a peace that surpasses all understanding, that God would heal Ella's heart completely, that she would not need a complete heart transplant, that she would live to be the light that we know she will be. We love you all so dearly and we covet your prayers. May you know Christ's love in your own lives!


  1. Oh amy, I have no words , but lots of tears... Im so sorry and we are praying for you daily. We can not wait to see her and hold her also. Love you guys.

  2. My prayer for Ella Dawn:

    O Lord, just as you said in Your Word:

    You created (Ella's) inmost being;

    You knit (her) together in Amy’s womb.

    I praise you because (Ella) is fearfully and wonderfully made;

    Your works are wonderful,

    I know that full well.

    (Ella Dawn's) frame was not hidden from You when (she) was made in the secret place.

    When (she) was woven together...Your eyes saw(her) unformed body.

    All the days ordained for (Ella)

    were written in Your book before one of them came to be.

    How precious...are your thoughts, O God!"
    (paraphrased from Psalms 139)

    Much, much, love and prayers are with you Jon, Amy and Ella. Please, please let me know if there is anything at all I can to do help or pray.

    With love, your sister,

  3. We are praying for your family. Your sister in-law sent me this sight. I understand. My 3 yr old daughter was born with part of her brain missing. I was sick in bed with her for the last 4 mo. I could not gain weight. The ultra sound showed liver damage and fluid on the brain. Her liver turned out ok and they did not have to do brain surgery on her as we were told would happen. We were told they could do nothing for her missing brain and could be severe as seisures,and her not developing and possible death by 2. We had my belly anointed with oil and prayed over at a Western Hills service the day before my c-section. She is a perfect 3 yr old today with no complication. God is able to do mighty miracles. You are in our prayers."He will tend his flock like a shepherd;he will gather the lambs in his arms;
    he will carry them in his bosom,
    and gently lead those that are with young. Isaiah 40:11" This is the verse God gave me this Morning. Pamela Woods ( Missionary in S. Korea)

  4. Praying so much! We are here for anything you guys need and we know Ella is so special!

    God do a work in Ella and give Jon & Amy the peace only You can, Amen.

  5. found your blog from kristina's facebook.. our family is praying for you guys during this journey! i can not begin to imagine how you feel, but pray that the Lord gives you a peace beyond understanding.

  6. Hi Amy,
    I am praying for you and Jon. We did not know about Payton's HLHS till after he was born but the 30 days we had with him are ones that I would never trade! I KNOW that the Lord is carrying you through this and that He will give you the grace to go through it. You will look back and be in awe at how you were able to be at such peace. Yes, there will be times that you will question God and there will be times when you and Jon will be at odds with each other during Ella's treatment, but you will both be made stronger, your relationship with each other will be closer, and later you will be able to minister to others who are going through what you are going through. THe Lord will be glorified in your lives! It will be awesome to see it!


  7. Hello! I just came across your blog today and wanted to introduce myself. My name is Jenny and my daughter Aly (1 year old) has HLHS. I'm so sorry to hear about your diagnosis. Our family will keep you in our thoughts and prayers. Also, from reading your post today, have you checked with Texas Children's Hospital in Houston for a 2nd opinion? I can't believe they are saying things to you like,"This is the hardest thing you will ever go through." Thats not very supportive. My daughter is treated in Michigan but I know of quite a few children with CHDs who were treated in Houston that are doing well. They were just ranked #2 in the country for Pediatric Cardio-Thoracic surgery.
    Being a heart mom is a rough road in the beginning but after a while, life becomes "normal". You would never know that Aly has HLHS if you saw here. As for Ella's complications, over the last year that I have been a part of the CHD community I have seen and read about more miracles than I can count. Babies are amazing- what they can endure and fight through.
    heart hugs,
    Jenny- mom to Aly (HLHS)

  8. Hoping and praying for the best. Always know that God is on your side and that He does good in His own and perfect timing. God bless!

    PS. If you have a Twitter account I'd love to follow.

  9. I just stumbled across your blog, and want to offer my prayers and support as you face this battle. My cousin had a baby with HLHS in Dallas as well. Their staff is incredible and the facility is well-equipped. I'll be following your story closely and praying so hard that everything ends up better than expected.

  10. I love you, Amy. I have been praying for Ella.

    Here is a passage from Oswald Chambers that I have been reading and re-reading lately:

    "Keep the thought that the mind of God is behind all things strong and growing. Not even the smallest detail of life happens unless God’s will is behind it.
    Therefore, you can rest in perfect confidence in Him. Prayer is not only asking, but is an attitude of the mind which produces the atmosphere in which asking is perfectly natural.
    “Ask, and it will be given to you . . .” (Matthew 7:7)."

    I love you like a sister, girl!


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