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 echo.....in 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 cavity.....to 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!