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CHD

Eight Years Ago

Posted in Family, Hoss, Memories
on June 3, 2019
Welcome Hoss!

Eight years ago today, Hoss made his grand entrance. We knew that he had a significant heart defect. We knew we had a long road ahead of us. We prayed. Our friends and family prayed and their friends and family prayed. We knew he was loved and so were we.

Welcome to the world little one.

The next 12 days brought lots of medical jargon, diagnosis, tears and surgical preparations. At three days old, his esophagus was attached to his stomach so that he could be fed through a feeding tube. Nine days later Hoss had his first open heart surgery. We didn’t know what his future would look like, we didn’t know how our lives would adjust, we didn’t know if he would live.

Fighter

He did and we are ever so BLESSED to have him in our family! Eight years ago we could never have imagined the joy he would bring to everyone he meets. He has the gift of humor and we never know what is going to come out of his mouth.

I'm thinking
Did you know it was me?
Hey Mom, look!

He is brave beyond measure. Because he has always had major obstacles to overcome, he knows no different, but some days just keeping up with a classmate can be a challenge.

Learning to navigate uneven ground
EKG May 2019

Despite it all, you almost never see him without a smile on his face.

Little Monkey
Class Clown
A genetic trait?
Gimme a B

Eight years ago today, Boom became the BEST big brother. He is patient beyond belief, protective and encouraging, teaching and supportive. He is Hoss’ biggest fan, and isn’t that the way brothers should be?

Disnerds
Studs
Champs
Cowboys

And so here we are eight years later, with a crazy life made immeasurably better by Hoss. Eight years ago we couldn’t have imagined the laugh until we cry moments. Eight years ago we didn’t know if he’d ever talk. Now we wonder when he’ll take a breath! Eight years ago we didn’t know if he’d be able to go to school. He’s already packed his backpack for first grade next fall. Eight years ago we didn’t know if Hoss would have any sort of life that could be considered normal. But God! God knew! We are so grateful for every moment with him, even the really really hard ones. We are so hopeful for his future and we believe God has plans for this special little dude to do something wonderful. Maybe he’ll be a scientist, maybe he will make people laugh or maybe as he told me yesterday he will “just be a good ole family man” but whatever it is, we will lift him in prayer as long as we have breath.

Large and in charge
First Lost Tooth
Farm Hoss
Hoss plays TBall
Carrying the Cross
Thumbs up for the end of Kindergarten
Jonquils 2018
Hoss on the Ropes Course
Hoss as Batman

Happy 8th Birthday precious boy! We love you and can’t wait to watch you soar!

Hoss turns 8

It all depends on your grid

Posted in Uncategorized
on January 25, 2018

I’m a very black and white person.  There’s no need for gray. Most anyone who knows me will tell you that one thing you can count on is knowing where you stand with me.  If I like you, you know it.  If I don’t, you know it and if I think you’re crazy…well, you’re gonna know that too. I rarely hold back and I call things like I see them. I’m loyal to a fault until you give me a reason not to be and then I’m gone. I’m extremely logical and have little patience for people with no common sense.  I grew up with the mindset that you do what you have to do.  There is no I can’t. That doesn’t mean it’s always pleasant or fun, but you gotta do what you gotta do. I always had wonderful parents and family that had my back through the hard stuff.  That’s my grid.

When I was about 26 weeks pregnant, Hoss was diagnosed with a significant congenital heart defect. It was heartbreaking and scary.  We had no family history of chd. We had no resources. We had no idea where to even start.  But in my world, and through my grid, we had to get ready.

As we met with Dr.’s and got ready for his birth, the information coming at us could be so overwhelming. I’d think, “I can’t do this”. Then I would be reminded, sometimes by the Holy Spirit and sometimes by my Mom, that I didn’t have a choice. I couldn’t sit around and have a pity party because I had to get ready for a baby. His birth was frightening.  Not traumatic in the way you hear of women who had horrific birth experiences, but frightening. There was no first cry because the NICU team immediately intubated him.  I just laid there and prayed he would live long enough for me to get to hold him. When I finally got to the NICU I was told I couldn’t hold him.  He had a monitor wire placed in his umbilical cord and it was critical and fragile. So I rubbed his head…it was the only thing that didn’t have an IV, monitor pad or something.

His first surgery was to connect his esophagus to his stomach so he could be fed.  I got to hold him the night before for a few minutes. The surgery went fast and was a blur.  We still had the first open heart surgery looming in a few days to put a shunt in his heart. It was supposed to take about four hours and took almost nine.  It was long and gut wrenching and exhausting. It was about 2:00 in the morning when we were finally told we could go into the PICCU to see him.  They warned us that his chest was still open so the Dr. would have quick access if needed and he was very swollen. As much as EVERY.SINGLE.FIBER of my being was screaming, “you can’t do this!”, my grid was screaming louder, “Go Now”. I went and I was able to make myself shut out the beeping monitors and look past all of the wires and the sponge covered wound in his chest and see him. I mustered my voice, asked the questions I needed answers to and started the next part of our journey. There was no time to sit in a corner and weep. I had a baby who just survived heart surgery to take care of.  That’s my grid.

 

Six months later when the anesthesiologist carried him in her arms to his second open heart surgery I really had a hard moment.  I kind of melted down the wall in the pre-op area and sobbed. I knew him so well at that point.  It wasn’t my newborn who I loved but hadn’t really even held, it was my baby. I knew his coos and his cries. It hadn’t all been bubbles and roses, but for six months we had been getting to know each other and it was physically painful to think of the what ifs at that moment not knowing if I would ever have him back. Then Vinniehoney got me up off the floor, settled down a bit and my grid kicked in.  This boy didn’t need a mama who couldn’t.  He needed a mama who would.  A mama who would pray, ask the hard questions, push through the fear to hear the answers, learn the medical stuff, manage the therapies and be so in tune to his little body that the she could detect the first sign of distress.  He also needed a mama who could trust in the love of Jesus for rest, peace, wisdom and comfort in making decisions for him. That’s my grid.

By the time we were able to head home with him a month later, I had learned to do things for him that I would never have dreamed of knowing how to do. When the nurse came in and told me she was going to show me how to place his feeding tube so I could make sure it was in his tummy and not his lungs I thought, “Nope! If I miss I’ll drown him”. But I learned and I practiced for days with the nurses there to double check me and we were able to come home. I learned how to administer medicines through that tube, operate a feeding pump, connect a heart monitor, speak in medical terminology and measurements. That’s a new part of my grid.

While we still have some medical stuff to face with him in the future, we’ve settled into a stage of life that is ‘normal’. I don’t panic every time he gets a sniffle anymore and skinned knees are part of life. They are just cleaned VERY thoroughly and watched very closely for any signs of secondary infection. If you had told me seven years ago what all we would face with him, I would have said, “I can’t”.  But then he came and my grid took over and I did so much more than I thought I could. My grid forces me to allow him to be a little boy.  He runs and swings on the barn gate and sometimes he falls and he’s funny and smart and sweet. I’d love to keep in him a bubble, to protect him from any risks at all.  My grid won’t let me.  My grid says let him be a little boy.  I have to. He needs to experience life at his own pace and find his own grid.

         

                        

 

 

 

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