Hi Friends,
It's been a week since the cardiologist told me that we needed to pick a date. It was hard to wrap my head around "picking" something so important. How could we really know what was best?! Shouldn't they be telling us that? We've prayed about it, but it wasn't like there was any writing on the wall. In the end, I told my dh that I though that the time frame we were given included all of the "good times" and that we are safe choosing any of them.
Trying to come up with a decision has been hard. Roger wanted to pick the first available date. I was less comfortable with this as it felt a little too rushed for me (and ultimately that date was not available any way). We tried to look at a variety of factors including day of the week (to separate the pre-op and surgery from being on back to back days), care for our children, and other things such as Easter.
Eliana will be having open heart surgery on Monday April 16th. Please mark it on your calendars and be praying for all of us!!!
We will go in the Friday prior to that for her pre-op at 9:30am. I've been told to expect this to be a long and difficult day. We will be meeting with the surgeon(s) on that day to discuss what will be happening, having our questions answered and hearing information that will be hard to digest (like mortality rates). Eliana will undergo a variety of tests including a sedated echocardiogram. an EKG, a physical exam and blood/lab work.
We'll have the week-end to recover and get some rest. We'll likely go in very early on Monday morning for her surgery. We'll know more details about the surgery after her pre-op. I've been told that it will likely take about 4.5 hours.
From other moms that have been through this, I've been told that the days prior to and especially the day before are just horrible! I can see that coming. Today when I called and had the surgery date confirmed I started crying. It is so hard for me to really think about what is coming.
I've been reading about other people's experiences and looking at pictures to try and prepare myself for what lies ahead. I know that I've said this before, but even though this surgery has been done before - even countless times, this our first time. This is my baby. If any of you reading this have things to share that might help us, please feel free to do that! It's so hard to know what to do or what to ask - this is all so foreign to us!
Things to pray about include:
*Eliana's health. Please pray that she remains stable in terms of her heart and the fluid in her lungs. Please pray that she doesn't get any type of sickness as this could postpone her surgery. She had a good ped visit yesterday. She continues to gain weight and is up to 10lbs 5 ounces. Her lungs sounded good (no extra fluid), her heart continues to work hard and her liver looked better (pressure from the heart affects the location of the liver).
*Health of our family. Please pray that all of us would remain healthy so that we can enjoy being around Eliana and not worry about passing anything to her.
*Wisdom in making decisions - from activities to participate in to how we spend our time at home. I've decided not to go on our family trip. I'll miss being with my family so very much, but I really think that this is what is best for Eliana.
*Surgeons. Please pray for steady and skilled hands. Pray that they stay in good health and get plenty of sleep the night before. Pray that there is nothing going on in their lives that would distract them.
*Family time. Please pray that we would have some great time together as a family before Eliana's surgery. Please pray that we can be honest with our feelings and that we can deal with them together. I'm expecting that emotionally this will be hardest for my daughter and I. Pray that we can use this to learn how to really lean on and trust God.
*Scheduling - We have a lot to arrange. The most important being childcare. We will also look to arrange meals and various helps around the house (cleaning, shopping, etc). Also having people able to visit and be with us while we are in the hospital.
*Sleep. We have not done a good job in managing this and would love to be better about doing this.
*Pre-op and surgery. That all is successful. That no mistakes are made. That the repair is done completely and correctly. Healing would progress without any complications.
I have several other things that I want to share, but will have to do that in another day or so. I already feel like I've talked your ears off! We appreciate your prayers, encouragment and support.
With love,
Leslie
Finding Jesus: A Christmas Miracle
10 hours ago
Leslie, how GREAT our God is that He allows us to "know" you through FIAR and these blogs. I don't "know" you and have never met you, but love you and your family dearly. I am crying reading your post...because I can so feel your mommy's heart. I will praying in agreement with you on all the requests you have listed. Especially the tender hearts of you and your family as the surgery approaches. Much love and many prayers!
ReplyDeleteI've been following your blog since you had your baby, and want to let you know I will be praying for you and all your needs. My heart aches for you and your family as you wait for this date to come. You are a wonderful mommy and your daughter is gorgeous!!!
ReplyDeleteDear Leslie,
ReplyDeleteHow wonderful that you have a date! Eliana's heart is going to be fixed! You will be amazed at the change in her once you all get through this! She will be able to get rid of that NG tube and drink all the milk she needs without getting tired! She will sleep less and verbalize more (including crying when she is hungry or just wants attention)! She will have energy to begin working on learning new skills! Make a list of all the positive results that you are believing GOD for and take it with you to the hospital to read over and over and focus on during those difficult hours of waiting AND during those difficult hours (days?) immediately after surgery (when you feel like a terrible mother for having allowed her to go through this). They will keep her well sedated; it may actually be true that this will hurt you more than it will her. So, keep focused on those goals on the other side of surgery. I'd play my favorite music cds, those that lift me up and boost my faith, constantly.
I put Eliana's surgery on 3 calendars!!! And I also put it in my Guideposts Daily Planner that I use as my prayer journal. Each day has a Bible verse. Leslie, the verse for April 16th is 2 Timothy 1:3,
"I remember you in my prayers night and day" !!!
GOD's BEST!
Anna
How I wished I lived closer to give you a hand with *something*!
ReplyDeleteYour post stirred my heart. The thought of one of my children having the same surgery as Eliana makes my chest feel like an elephant is standing on it.
My DS had sugery on his face when he was one and I was a wreck! (sorry about the lack of encouraging words.)
Continued prayers for your family. Thank you for making the specific prayers known as it gives me a great outline to go by. Hugs go out to all of you tonight!
Praying for you and Eliana and all your concerns!
ReplyDeleteThe date is going on all my calendars and we will all be in prayer for your sweet baby and you.
Love ya,
Linda