Thursday, October 15, 2009

9pm....Thursday evening

Today has been another interesting day.....will life ever be normal?

First of all, an echocardiogram was ordered. This is routine before releasing an open heart patient. The fellow who did the echo was someone new, Danny. During the process, I mentioned that I hoped he would be able to see what was left of Hopey's aneurysm. As he continued working, he asked: "You mean the one the surgeon removed?" I then told him there was some significant debate going on between the cardiologists as to whether some of the aneurysm remains in Hope's heart.

Immediately, he went to the area where he knew the aneurysm was supposed to be located.....the aneurysm that had never been seen by echo.....the aneurysm we were told could only be seen through more invasive procedures where Hope has to be put to sleep like a heart cath or MRI/Angio.

As he searched, I prayed.....then I would encourage him.....then I would pray.....then encourage....etc. All the while, I held Hope as still as possible and spoke softly to her while my mom fed her vanilla ice cream. Amazing. She was completely still and cooperative, which hasn't been her strong suit since being prodded by the medical staff continually for the last few days.

He found it! It has NEVER been seen by over 4 years.....and Danny found it!!! What does this mean? I don't know yet. He took lots of pictures which were reviewed late today by the cardiologists who are experts in "imaging". We hope to find out tomorrow morning!

Second, Hope MAY be released tomorrow. I'm still in shock about it. When Hope entered the hospital, we were told it would probably be a 2 week stay. The surgeon felt she would have temporary heart block due to the extreme swelling that follows this type of surgery. She did not have a moment of heart block! The 8-10 days that are usually needed to overcome heart block, therefore, were not needed. On her two previous surgeries, she did have heart block. We are thrilled beyond belief the Father has chosen, this time, to spare her from a long hospital stay. Way to go, God! Way to go, Hopey!

Before releasing Hope, though, chest tubes have to be removed. The chest tubes are placed way up into her chest cavity....waaaaaay up in her chest drain blood post surgery. In her last 2 surgeries, I was asked to leave the room before they were removed, because it is so painful and traumatic to the patient. Today, I asked to stay, and they said yes. I knew I would see my baby in more pain than she has experienced in her life. I just wanted her to see me in the room during the procedure, because I also knew she would be more afraid than she had ever been in her life as well. The Nurse Practitioner, however, asked if I would like to stand beside Hope and hold her little head in my arms instead of just standing as a spectator. I was so thrilled with the trust she placed in me at that moment. Therefore, I was ab le to hold my baby's head in my arms, look into her eyes and speak to her during the entire ordeal. The scream that came from her was unlike any scream I've ever heard before. It cut through me like a knife and plunged deep into my heart. I was able to share the pain with Hopey. I believe I took some of her pain! Isn't that every mother's desire? It might sound odd, but at that moment, there is no where on earth I would've rather been.....the bond I already shared with Hopey as a result of her health issues strengthened and solidified even more today. What a privilege, and what a gift that Nurse Practitioner gave me!

Third, I had the opportunity to meet two sweet families this evening in my required CPR training. I have taken the training 6 times now, so if you ever need CPR, I'm a person you'd be fortunate to be around (ha!) I am required to take it after every hospital stay since Hopey is a heart patient. Better safe than sorry. Anyway, I was in the class with two other families who have newborns with heart defects.....both infants had just undergone their first open heart surgeries. One family lives in Knoxville and the other in Dothan, AL., so both are far from family and friends. I had the opportunity to love them this evening, and share my phone number with them for when they are in town for follow-up/additional procedures. Even though we live in different cities, I was able to establish a connection with each of them.....a person we all have in common. Accident? Of course not!

Last, I'm not sure if I shared this yet, but I'd like to mention it again, regardless. On Monday morning at 5am as we were entering the hospital, my "March for Hope" had become more like a "dragging my feet for Hope". I was dreading it so badly. Then, just as I came to the electric doors to enter the hospital, it hit me: There is a man in this hospital who has been medically trained and is able to save Hopey......and suddenly, I realized I shouldn't be marching toward the surgery floor, I should be running to the surgery floor! And peace washed over me.

The last two days have been filled with many ups and downs as we have learned more about the potential issues Hope may still have as a result of the remaining aneurysm.....the cardiologists words today were this: "If it ruptures, even though I do not believe it will, it would be catastrophic for Hope". OK, I had to digest that all day. But you know, tonight when I had the opportunity to minister to and encourage the two families who were placed in my life in my "umpteenth" CPR training, once again, a wonderful peace washed over me.

More than ever before, I am certain there is purpose in all things.....those parents needed me tonight, and I was here for them! (Chappy wasn't with me, because he was dealing with a flat tire----spare was flat too----it was raining----not a good evening for Chap!)

Depending on the news we receive from the cardiologists regarding the echo that was done today, our 30 day blog may be extended for a bit longer. I would love for you all to keep up and continue to make Hopey a part of your families. Afterall, because of Christ, we are all in the same family anyway, right?

WELCOME HOME PARTY WILL BE SOON!!! Thank you Lord, for sparing our girl......I am most thankful that your plan included allowing us to keep her with us for a bit longer.....I hope a LOT longer. No matter what is ahead, Father, I promise, here and now, to trust You!


  1. I have waited anxiously, but with prayer, all day for this post. I must have checked more than a dozen times. My heart overflows for you as it manifests with the tears in my eyes. I am so thrilled with the progress Hope has made. We thank and praise God for His goodness. Bob and I pray for nothing but good things in the future for all of you. May the healing continue miraculously and completely.
    Our prayers will not cease for her and all of you who love her so much and who are going through it with her. May God bless you and keep you in His care with guardian and ministering angels surrounding you all the time. In His love, Lois

  2. Oh please do not stop your blog. It breaks my heart the suffering you all are enduring and yet thru it all your love is so inspiring, and your faith so deep. Thank you for the gift you give each of us by sharing you precious Hope with all of us. Praise be to our God.

  3. I have checked all day for news of Hope. Thank you for your transparency. As I have prayed for you during this day and many prior to this one, I realize that you have experienced so much of the character of our Holy God, the I AM, the Almighty Father in your walk these last 30 days. Your testimony and the testimony of your family is amazing and full of is all about Him!! I pray God will bless you tonight and that your sleep will be peaceful......that Hope will have peaceful sleep, and that the God of the universe will watch over you and your family in His tender ways.
    Teresa, Americus, GA

  4. I to have checked ALL day long waiting to hear how Hope was doing, how you were doing. I love your blog and really hope that you turn it into a ongoing blog. Your faith has helped me so much, her strenth and fight is something they make movies out of. We will continue to pray! You keep on typing! :) So thrilled for her amazing recovery! May God be with you!
    Jules in Seattle

  5. So happy you have shared Hope's journey with us so far . . . and hope you continue to do so. What a blessing she is, and how encouraging it is to read about your faith in the the great Healer!

  6. Melanie & Family-We too stayed up waiting for your post last night. You must keep the blog going whenever you can. We all love Hope soooo much & do you know I still have emails from when Hope was in your womb? I kept them as printed proof that God had sent us a miracle through Hope. Now this blog is again proof that God is using your family & Hope to touch so many.So many tears have flowed this week-ones when our hearts were breaking for Hope-ones when we were thankful & rejoicing for Hope, but throughout them all we will keep trusting in Him to heal her & that He will continue to give you & Chappy the strength you need to bring her home. I know her siblings will have loads of excitement waiting for her arrival home. We are praying it is soon!! Love, Stacey, Neil, Parker & Payton Miller

  7. I am in tears but they are happy tears. Hope's story has touched so many people. She is such a little fighter that Hope. I am so happy that you may get to bring her home soon. Let me know if you are home or still in the hospital and what hospital she is in so I can come visit this brave little girl and your wonderful family hopefully. God bless.

  8. My heart hurts for you... I remember vividly the day that they "pulled" Ky's lines. It was one of the most awful experiences of my life. I think that seeing her after surgery was not even as bad as that. At least then I knew she wasn't in pain...

    Can't WAIT to see the "welcome home" pics and so incredibly happy that God is at work. I know that HE is with all of you every minute of every day...

    Hugs and prayers...

  9. I'm so glad for you that you had some good news with the echo. Prayers that it will give them some further answers in healing your beautiful daughter.