8:35pm.....Wednesday Update

What a day! Our day began very early with a recommendation that we get an MRI as soon as possible to determine whether Hope still had a part of the aneurysm left in her heart. The urgency being that the aneurysm could be unpredictable and might need to be dealt with.

Throughout the day, we received at least 3 completely different opinions about Hope's condition from 6 different cardiac experts. The opinions were as varied as: "She still has an aneurysm that needs to be dealt with" to "I don't think it's an aneurysm at all, but possibly swelling/tissue from post surgery trauma"......"She needs an MRI right away" to "The MRI will be a waste of time and put unneeded stress on Hope"......"The aneurysm is very serious" to "I don't think the aneurysm is going to cause any issues even if it is still there".......etc. At many points during the day, we felt like screaming: "HELP!" As parents, we want to make the best possible decision for our little Hopey......however, we will be the first to admit we are ill-equipped when it comes to medical/heart knowledge. We certainly aren't doctors!

At 6:30pm, our lead cardiologist came through the door and put everything into new light for us. He was a God-send! I told him all of the opinions we had been receiving throughout the day, and how we were feeling pushed toward the MRI by many, but nervous about Hope having another procedure so soon after surgery. He laughed, pulled out his pager and said: "You think you have gotten alot of opinions today, my pager is FULL of messages from people in this hospital telling me what they think needs to be done with little Hope". Everyone wants to care for our girl.....it is really very sweet.

His answer to us was that we do not need to make a decision right now; and he does not feel this is an emergency situation. He encouraged us to get Hope home, allow her to recover, and then we'd talk about the MRI in a few months. PRAISE!!!!

Hope's heart situation is fairly complicated and involves more than I can go into here. During the chaos of getting so many differing opinions today, Chappy and I were able to stop and think about what we would be willing to put Hopey through. We agreed wholeheartedly that for right now, the little thing has been through enough, and we will trust God with the rest! Three heart surgeries in four years is alot......for now, it is plenty.

So, with excitement, we are planning ahead to Hopey's "Welcome Home" party which may be very soon. We can hardly wait! Wanna join us???

1:30pm on Wednesday.....quick update

We will meet with the surgeon in a couple of hours between two surgeries he is performing this afternoon. The cardio team's current plan is to do the MRI/Angiogram on Friday. Hope still has tubes in her chest, and she is still bleeding, so they want tubes removed and bleeding stopped before putting her to sleep again. I'll post more info later after we speak to the surgeon. Thank you so much for your continued prayer support.....I feel like Hope is becoming your little girl, too, as I read your comments. Your love for Hopey, a "special one" whom some of you have never met, is absolutely overwhelming and often brings me to tears.

9:35am on Wednesday.....Update

Hope's bleeding continued to slow throughout the night. Huge Praise! The fear was the chest tubes could've punctured her heart when the staff was moving her to another room. While they do not know what caused the sudden increase in blood, they join us in our celebration that it is slowing down. Chappy and I KNOW it slowed due to answered prayer.

At the moment, we are waiting to meet with the Cardiology/Surgery team this morning. They are trying to arrange with anesthesia to put Hopey back to sleep and do an angiogram/MRI today. The post-operative echo showed there is a good possibility the entire aneurysm was not removed during surgery. Some of it appears to still remain in Hope's heart, which can affect blood flow/routing. We knew it was difficult for the surgeon to know exactly where the aneurysm was located when he had her chest open, because it is in the posterior part of her heart, which makes it difficult to visualize since he is working through a tiny hole in her aorta. In addition, with no blood pumping through her heart during surgery, the aneurysm was not ballooning in and out. I am going to ask you, again, to pray with boldness throughout the day that first, the cardio surgical team will be able to find an available cardio anesthesiologist who can put Hope to sleep so the angiogram/MRI can be done as soon as possible. Second, that the aneurysm was completely removed during surgery afterall, leaving Hope's heart with no pressure or blood flow issues. And third, that the team will NOT desire to re-open Hope's chest and do another procedure.

I know our battle is not against flesh and blood----there is a very real dimension that is unseen to our eyes, but nonetheless, hard at work on a daily basis to undermine the Father. In your prayers, please pray against evil that would try to come against Hope in any way while she continues to recover. She is touching the hearts of many at the Children's Hospital, and I am sure the evil one would like nothing more than to interfere with God's tender plan for our little one. You all would be so proud of her. She has proven to be a strong little soldier---she is in alot pain, but still manages an occasional smile. Her throat is so sore due to the surgery, she can't eat or drink without alot of pain and gagging----but to make me happy, she tries. She is nauseous, and has thrown up a few times, but she keeps pushing through. I'm amazed at Hopey, and I love her more today than I've ever loved her!

Thank you in advance for your prayers.....thank you for making her a part of your lives! I'll update when I know anything, but sometimes information is slow coming.

12:15am....update

The bleeding is finally beginning to slow......Hopey will be monitored closely through the evening. Thank you for your prayers of faith. I shouldn't be surprised the Lord "nudged" so many of you to check the blog tonight, but yet, I find myself amazed again. Amazed in a wonderful way. Scripture says He searches the whole earth for those He can trust and find faithful. Scripture became alive.....living.....to me this evening as I personally witnessed His gathering of praying warriors. If you were part of that group, you can be sure you were called. How does that make you feel? I hope wonderful. Thank you so much. I have a feeling Hope's bleeding wouldn't have changed without your prayers. I really do believe He is using the praying warriors to bring about His perfect will. Hope is feeling fitful.....probably due to so much "attention" over the last few hours from the medical staff. I will be with her and not post until late morning when I know more, but I feel a peace that we are moving in the right direction again. "Call to Me and I will anwer you"......"Ask and you will receive" I praise you Father for taking a scary situation and making it a beautiful lesson of your intricate involvement in all of our lives. You could have answered my prayers and given me the blessing, but instead, you chose to involve many to pray for Hope this night and gave each praying warrior a blessing of seeing Your hand at work.....allowing all of us to experience You! I bless your Name as you continue to use our little imperfect Hope to teach me, and others, more about You.

9:20pm Tuesday the 13th

Hope needs prayer right now.....hopefully several people will check the blog before going to bed this evening. Hope was moved from Critical Care to the 6th floor. She is sharing a nurse with one other patient, so she is still getting alot of attention. Before moving her, her blood output was between 10-20 per hour........after moving her, in the first check, her blood output had increased to 40 in an hour......last check, a few minutes ago, her blood output was 80! Not a good trend. We DO NOT want her to be re-opened!!!! Please join us in praying that the bleeding will stop!!! Thank you in advance to whoever begins to feel a nudge in their spirit to check Hope's blog this evening, obeys, and prays.....Chappy is staying with me this evening as we stand by Hope's side.

5am Update

She did well through the night....she was put on Precedex to help her with pain and to stay somewhat sleepy. She's also been receiving Morphene and Tylenol. This morning, she will receive some more blood because her red blood cell count was low. Her bleeding is continuing to slow....receiving Lasix to pull of excess fluid.....vital signs stable other than when she was given a full dose of Morphene (it pulled her blood pressure down). She is a sweet, sweet girl. Has been restless throughout the night with pain. Today, I should be able to hold her. I think that will help. Thanks for continuing to pray as she recovers. "I will bless the Lord at all times, His praise will continually be on my mouth!"

6pm update

I cannot even express how good it feels to be sitting next to Hopey as I type this post. After surgery, she had an issue with bleeding......completely under control now. She is still on the vent., but the docs plan to wean her through the evening........total praise! Her blood pressure has been a bit erratic......getting it under control by trying different meds. She puckered up her bottom lip and pouted a few times, which tells me she is ready to be held and babied......cannot wait! She is still hooked up to a million tubes right now, but soon.

I have to admit, I really did give Hopey to the Lord. After 30 days of marching, I had actually come to a point where I was ready to accept HIS will......whatever that meant. I am thrilled beyond belief that HIS will is for Hope to not only live, but have what looks like a speedy recovery. I would be elated to be out of here in only 7 - 10 days! The nurses remind me that we are still in "Critical Care" with alot of balancing left to do, but I have a peace and assurance. My answer came from the Lord today.....loud and clear. My baby is coming home healed and whole.

I'll be by her side all evening. New rules in Critical Care.....I don't have to leave her for shift change. So, I'll update as I have a chance. Thank you all so much for your prayers. I know, without a shadow of a doubt, each and every prayer was needed for Hope today. Those of you who prayed mightily for our girl, you were called for that purpose. Some day, in the Kingdom to Come, you'll see exactly how your prayer was used today.....and some day, my little Hopey, in that Kingdom, will have words to speak and will be able to hug your neck and say thank you!