Scouring the internet for information. Reading page after page on blogs of other HLHS kids. Watching videos and inhaling articles and making lists. And I've decided that the internet can sometimes be my worst enemy.
Because while I'm glad to be able to see from other people what lies ahead, I'm also struggling with feeling so vastly unqualified for this.
Going into the Fontan, most heart moms have 2 open heart surgeries under their belt. They know to bring front opening shirts and treasure boxes of surprises and how night rounds go. They have big, medical words in their arsenal to describe symptoms and they know where the play room is in the hospital. They talk about working with the same team for all three surgeries and how much easier that made this go round.
And me?
God, I'm still trying to figure out what exactly they are going to do to his heart.
I have no clue what to pack or how to eat while we are at the hospital. Are visitors good or should he just rest? And how on Earth do I prepare Gabe for the intense pain he's going to feel after surgery.
I didn't know that we will have to be in seclusion for a couple of weeks after surgery. Or that I can't pick my baby up under his arms for six weeks.
I didn't know all the risks. That going on the heart lung bypass machine can effect his brain and organs. That it can take hours to carefully cut through his scar tissue.
I'm trying my very hardest to not obsess. To not let it consume me.
But there are so many tiny parts to this that every time I get my mind to rest, another detail pops up.
Gabe's heart cath has been set for December 6th.
I'm glad to have a starting point on the calendar instead of just some far off maybe time frame. It's an action step, and we work well with action steps. It will be a long day, but we will come home that night and Gabe has done well with all the cath's he has had done.
From there we will hopefully get the next action steps.
I know and am fully confident that we will all come through this. I know from all the reading I've done that after a month, we will all be back to normal life with the added bonus of a boy without blue lips. I'm glad to have the information, but wish there was a way to know without knowing.
I don't want to cause anyone else to worry, but I also want to be real. I want other heart moms to know that these feelings are normal. And I want to be bold and ask for your prayers.
For now they include:
- That Gabe would stay healthy so that we can keep his cath set for the 6th. Any signs of fever or illness would cause us to have to reschedule and go through this waiting all over again.
- That Andrew and I would feel at peace with the decisions we are going to have to make.
- That Gabe would handle the anesthesia well. Last time he had trouble coming out of it and it was the saddest thing I've ever seen. We are praying that this go round his body will respond better and that he will be more comfortable.
- That the doctors would get clear, concise readings so that they can give us results and plans with confidence.
7 comments:
Prsying hard for yall . . . and please let me know if I can help!!!
Prayers for your beautiful boy & family!!
Sending up prayers here, too.
Covering you all in prayer! May the Lord cover you with His peace and protection!
Praying for you and your family. Wishing you peace and clarity as you go through this.
I know it is hard looking in to the Fontan and that looking to the upside of everything is going to be even harder. You will do fine and so will Gabe. When my cousin had the surgery she had very minimal visitors, only family came to see her right after. Try and look at the good of the surgery, how he will be able to run and play like his sister and friends without being short of breath as he takes the first few leaps in running. God gave you Gabe because he knows you and your family are the right fit for him, y'all will be able to take care of him the way he needs before and after each surgery. :) Keep you all in my prayers.
I found your blog on accident and was riveted as I read. As a heart baby mom, I understand what you are going through. My daughter had four open heart surgeries before her second birthday, the last one being the Fontan. No level of knowledge or thought will prepare you for what you will go through. But God is going before you, preparing a path for you. He knows where you have been and where you are going. And He will walk that road with you. You will be fearful, frustrated, and cry. But the peace of God that transcends all understanding will wash over you when you need it. The Creator and Great Physician will guide the doctor's hand. And the nursing staff will help educate you as your son begins the healing process. I will be lifting you up in prayer.
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