In particular, our recent track record with Sundays.
3 Sundays ago, FH and I planned on grilling out hamburgers.
And then I went to the ER and had an emergency C-section 3 months early.
2 Sundays ago, FH and I planned on grilling out hamburgers.
And then while we were at the NICU, we were told that our son had a hole in his heart.
Last Sunday, FH and I were saying how nice it would be if we could finally grill out.
And then we were told that our son was being transported immediately to a new hospital for surgery.
Today is Sunday.
We swore we weren't grilling out tonight.
We swore that we wouldn't make any plans whatsoever for the day.
We packed our bags to go to the hospital, just like we have every day this week in case
we needed to spend the night. (The last few Sundays, we had to go back home for stuff.)
I washed my hair, which I didn't do on the previous Sundays, just in case.
And today was the best day ever.
Baby Harper has redeemed Sundays for us.
Today has consisted of me holding him for the first time ever.
Me kissing him for the first time ever.
Him getting out of his little box for the first time since he was born.
I got to hold him for 2 hours when I was expecting to hold him only 10 minutes.
He was so tiny that it felt like I was holding a little guinea pig.
His tiny little fingernails and toenails felt like a small animal's claws on my skin.
There were tons of wires and his breathing tube was taped to my shoulder so it wouldn't fall.
And it was one of the most amazing things I have experienced in all my life.
He did awesome.
All of his numbers were amazing while he was skin to skin with me.
I finally felt like he really did need me, because I could do something for him that the nurses couldn't.
I will never EVER forget this day.
Not to mention, it ended with dinner at my favorite place, a trip to Target, and 2 of my favorite TV shows. I mean, come on, what more could a girl ask for??
Being a NICU parent is hard.
Like really really really hard.
We are like walking zombies.
Of course I'm up all during the night pumping, which I know is normal for mothers of babies.
But then we spend half our time on the road driving back and forth to the hospital.
Then we also have K&A.
Who I am scared to death are going to feel neglected because of the new baby.
So we make sure we still go to volleyball games and football games.
It's a never ending, exhausting balancing act.
I'm not complaining, just explaining.
The NICU is like it's own little world.
It's an amazing thing to be a part of.
Although I can't say I will miss it when we are gone.
The nurses are seriously a gift from God.
Every single nurse that we have encountered has treated our son as if he were their own.
They talk to him, love on him, take care of him just like I would.
They do everything in their power to make him comfortable and that we are too.
I am shocked and amazed at how good they are at their jobs.
The other night we were there and a really loud buzzing went off.
Obviously a baby was having trouble.
Every single nurse in there ran to help.
We found out the next day that the baby died.
I don't know how or why, but it broke my heart.
Not only for the parents, but also for the nurses.
I know they love them so much that it kills them when one doesn't make it.
And the most amazing part is, they were so protective of the entire situation that they kept it
hidden so well.
Obviously they know that other parents in the NICU don't need to hear or see about that.
We were told that after Harper had his surgery, most babies his size have several bad days.
And then they start going back uphill.
This was extremely scary to us because if you didn't know about the hole in his heart, you would think he was doing great.
He was breathing better, all his numbers were good, he was even pooping! :)
We had to trust the doctors when they told us that they were going to cut open our baby who weighed less than 2 lbs and that he would then get worse before he got better.
Side note: the doctor who did his surgery said that Harper was twice the size of the smallest baby he had ever performed the surgery on. Can you even imagine that?? His heart was about the size of a fingernail. Like a pinky fingernail.
That. Was. Terrifying.
But we trusted them.
And prayed like crazy.
And begged all you people to pray like crazy.
He did amazing in his surgery.
And it's a blessing that we didn't wait around longer just to see if medicine would heal his heart.
Because the doctor said that the hole was much bigger than expected.
They normally use one clamp to close the hole and Harper got two clamps.
Which will always be there, his heart will just grow around it. That was one of my questions. :)
What a relief.
And then, we started having bad days.
Nothing awful, mind you.
Just not good numbers.
No weight gain.
No signs of getting any better.
No good days.
It was so hard during these few days to answer the question "How is the baby doing?"
Could I really tell you "Not very good right now."
We just waited.
And I cried and cried and cried.
And stressed some more.
And didn't sleep.
And then finally, yesterday was a good day.
And today an even better one.
Throughout this whole process, I have tried my best to stay positive.
To take it one day at a time, one hour at a time.
To know that it could always be worse.
But at the back of your mind, you really just want to sit and cry and have a pity party.
And want to know why your baby didn't get to come home already?
Why are we not holding him and complaining about his crying like normal parents?
The "what ifs" begin to roll in.
What if I would have gone to the doctor on Friday right when my head started hurting?
What if I were better at being pregnant?
What if I could have done something differently so that I could have kept him in longer?
What if we could have gotten the steroid shot early enough for his lungs?
But the truth is, none of that matters.
What matters is that today was a good day.
Now, we just have to pray that tomorrow is a good day too.
Thank you all so much for your continued support and prayers throughout this time for us.
I wish I could respond to every single IG,fb, and blog comment I get but it's not possible.
Not when I have a 2 lb baby that needs most of my attention.
But I love the comments and the prayers. I love all the love this baby is getting.
Hug your babies tonight for me!
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