June 17, 2019
  • 11:37 pm Fall 2018 Pictures
  • 1:37 pm Halloween Photo Drop
  • 4:35 pm Heartiversary Celebration
  • 4:32 pm Fontan Clinical Studies
  • 4:18 pm Tomorrow is Holden’s Heartiversary

**warning: long post**

This is the only picture I have from a year ago today. Corbyn was just about to blow out her diaper so badly that we’d have to do an emergency bath and wardrobe change as we waited for my in-laws to come into town for lunch. My mother-in-law was having chemo that day. Holden was upstairs sleeping in his room– he had been sleeping all morning. This is just hours before our life changed forever.

Prior to this day, precisely the Thursday before, we had come in from a walk and Holden was crying in his car seat while I made Corbyn’s lunch. I let him cry bc I “knew” he was safe. Finally, I looked over and he was blue, crying hard, and very sweaty. I quickly pulled him from his car seat and whisked him to the dining room to sit with him. I began nursing him to see if that would help increase his blood flow to his face. I had no idea what was wrong, so I just held him for awhile until he returned to normal. Although shaken, we continued with our day. I decided I’d keep a close eye on anything else that was weird. The weekend came and the only strange thing was that he became fussy during feedings. Sunday night Holden, Dustin, and I didn’t sleep well because Holden was extremely fussy and wouldn’t nurse.

Monday morning (May 2nd), I had decided I’d call the doctor to access him (thrush maybe?). Corbyn and I had a nice morning on the porch, until the aforementioned diaper incident, we had lunch and went for a walk with the grandparents, and came home. The grandparents left and I put a melting-down Corbyn to bed for her nap. She was upset because she thought I was leaving. So I assured her I was staying home and got her to sleep.

Holden had not nursed all day, so Itempted to nurse him. He immediately became fussy and turned blue, again with the sweating. Immediately I jumped up and tried to calm him while simultaneously calling the pediatrician’s office, texting my small group for prayer, texting Dustin, and trying to get ahold of my in-laws to turn around.

I didn’t think I sounded urgent enough in my firsttempt in calling the office, so I called again, this time making an appointment. I knew I just I had to get him in quickly for someone to see what was happening. I called my in-laws probably 20 times, combined between their two phones. Fortunately they had been checking out a local green house on the edge of town, and so when they saw a million missed calls from me, headed my way.

I paced the house until it was time to leave. Up and down the stairs between the living room and Holden’s crib.

The appointment was made the office closest to Dustin’s work so that Dustin could meet me there. Once in the pediatrician’s office, they struggled to get a strong reading on the pulse oximeter. Nurse Practitioner, Christy Glass listened to his chest, and that’s when his murmur was detected. Prior to this appointment, his oxygen saturation was fine, and his heart sounded fine. Later we found out that this was due to the changing of the valves from working as a fetal heart, to working on it’s own, relying on it’s permanent anatomy.

Read more about it here: http://www.texasheart.org/HIC/Topics/Cond/fetal_ht.cfm 

Christy called another NP to listen, and she confirmed there was indeed a murmur. I wasn’t too concerned yet– then the ambulance was called for WVU Children’s PICU team to come get us. My job was to just hold him until the team came. Dustin drove home to get some things for us. My phone was dying. Holden had nursed once that day for 26 minutes, and my body was exploding and imploding.

I sat in the front seat of the ambulance as the team tried to keep Holden stable. It had taken them a long time to get into the ambulance because he was unstable. From the back, they kept reassuring me that he was okay. The driver tried to make small talk.

Once we got to the hospital, they whisked him behind those PICU doors and I didn’t see him until hours later. Not until after thetending physician and the resident walked us back to the kitchenette in the waiting area to inform us that our son had Congenital Heart Disease (CHD). The cardiologists were still trying to identify what was going on with his heart. It was/is so gnarly that they could hardly identify what was what.

Fortunately our pastor, midwife, and friends, the Dodrill’s (who happen to be a pastor and midwife all-in-one package) came to pass the time with us. My friend Mary, a nurse in the NICU, happened to be working that day and came to check on me and most importantly, found a pump for me.

God put so many people in our lives that day to save Holden and to make sure Dustin and I had comfort.

Finally we were escorted to the back of the PICU where Holden laid in a metal hospital crib with a thousand cords coming from his body. The cardiologist tried to explain many things to us. Dustin and I each probably remember a couple things. I stayed the night there with Holden while Dustin went home to relieve his parents. the time we didn’t know that they’d be living there with Corbyn for the next 20 days, and that Holden and I would take up residence in the PICU, and that Holden would receive heart surgery.

That was our day exactly one year ago. This is the picture I have to show for it. This is the day we became a heart family and our son became a warrior.

We’re so thankful for the people God has placed in our lives over the course of the year, from the countless people who came to sit with us and/or bring food, who prayed with us and for us, and to our pediatrician, Dr. Lisa, who lets me bother her all the time, making sure Holden’s ok. Thank you to our family, friends, and extended community for being with our family in this journey. In the words of Tobymac, “it’s not over yet.”

Meghan

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