Tuesday, July 10th was a day I had on my mind since I heard her heart mur mur for the first time when she was just 12 days old. All I wanted to hear was that they would be able to fix it! After a month full of doctors visits, ER visits, and endless sleepless nights I was so ready to get it all figured out and over with. I woke up, threw on a dress, fed Rew and headed out the door to our 10AM appointment up at the childrens hospital. I didn’t know what to expect, all I knew was that we were finally going to get a surgery date and learn exactly how they were going to fix our girl. To say I was nervous was an understatement!
When we arrived we did the usual paperwork and vital signs and then waited our doctor. From the vital signs alone I knew things weren’t looking good. Goldy hadn’t gained a single ounce in over a week and in fact she had lost a few. This is something I had suspected because she had been vomiting multiple times a day. I just assumed it was because of her heart meds but after hearing from the doctor, I learned I wasn’t entirely correct… He sat us down, looked at Goldy, reviewed her records, listened to her heart and lungs and then proceeded to tell us that she was in the beginning stages of heart failure. My heart instantly sunk. This wasn’t what we were hoping for, we were hoping that the second dose of daily meds was going to kick in and she was going to be able to put off this surgery for a few more months or at least a few more weeks so she would be able to grow bigger and stronger before going under full anesthesia. NOPE!
After telling us about the beginning stages of heart failure he began to tell us about the procedure. The procedure was done by a cath inserted into the vain in her femoral artery. They would put her under, run a cath with a “plug” on the end of it from the incision in the crease of her diaper line up to her heart and then position the plug into the hole in her heart where her PDA didn’t close. Although this sounded much better than open heart surgery, I still couldn’t imagine my sweet little not even 10lb baby girl going under and being put through this. I feel guilty even pulling the tape off her ear from her ear molds or pushing too hard when I suck the boogers out of her nose, I couldn’t even imagine putting her through this but I knew it had to be done. After asking a million questions and trying to wrap my mind around the surgery we left with only one question remaining. What day was the surgery going to happen. He told us his scheduler would call us by the next day.
Within an hour of leaving the pre op appointment we had the surgeons scheduler calling us asking if we could come for his very next surgery availability and be the first case of the day. This is when it really started to sink in. So on Tuesday at noon I agreed to bring her in on Thursday at 5:45AM. Having less than 48 hours to wrap your head around the idea of your baby having a major surgery has it’s pros and cons. Pro: I didn’t have much time to build up anxiety about the surgery but I didn’t have much time to mentally prepare either.
Wednesday was a zoo, I had to work, get everything ready for my parents to come, pack our hospital bags, get Rewsey ready, and take Goldy to another doctors appointment up at the U to check over some things with genetics. Not to mention we were in the midst of fundraising for her hearing aids, trying to sell concert tickets and answer all of the calls from the insurance company and hospital to get all of the info they needed for surgery. My emotions were off the charts that day. As much as I tried to keep it together I couldn’t. After my first client of the day and an unplanned genetic test I cancelled two of my brow clients last minute to try to get it together.
Thursday morning came too soon, especially because it was only 5AM. We got up threw on our clothes and headed back up to the hospital. When we arrived I couldn’t believe all of the other children their having surgeries so early in the morning! Of course after seeing some of them I felt extremely blessed. The pre op room was nerve racking, we just sat in there and waited for one doctor and then the next to come in and give us the risks of the procedure. Even though I already knew them m, they just sounded so much worse in the actual context. The nurse came in and handed me a gown that was their smallest size and it completely drowned Goldy. Then the nurse proceeded to tell me how tiny Goldy was which only made me more anxious considering they wanted her to be bigger to have this operation done.
Waching the clock is something I never do but by 7AM I was watching every second wondering how much longer I had before I had to hand off my baby girl and leave her for the first time in her life. Even though I knew in my heart that she was in good hands and she was going to be great I couldn’t help but think of the worst case scenarios that they had outlined for us. So I kissed her on her forehead and said another prayer just in case. Then they gave us our pager, ushered us out, and we waited.
Waiting for an old school pager to buzz to pick up your baby from surgery is like waiting at a restaurant who has an hour and a half wait while you’re hangry with a buzzer. There’s no better way to say it than anxiety. Pure anxiety. After a few hours passed by we finally got called back. Of course we couldn’t see her when she first came out of surgery because of the anesthesia so then there we were waiting all over again.
Finally we got into the recovery room and she was zonked. They had us keep her legs straight so that she wouldn’t bleed out where her bandage was. Trying to keep her legs straight was nearly impossible with the stiff small hospital swaddles so they brought a twin sized folded fitted sheet and laid that on top and around her until I got smarter and used her big knit copper pearl swaddle to do the job.
After we got the hang of keeping her legs at the right position they tucked us away in our overnight room and attached her to all the cords to monitor her heart rate, oxygen, etc. These cords and machines all used to freak me out but now that I know what they all do and how to silence them when they beep they don’t intimidate me anymore. Now it’s just a jigsaw puzzle to keep the cords untangled and plugged in.
Waiting for time to pass in the hospital is worse than waiting for time to pass in math class in grade school. I’m just grateful I had Kylan there with me to pass the time. Also my parents brought Rewsey by with get well balloons which made my mama heart happy. If it wasn’t for those things I may have got confused and thought I was in jail.
Sharing a cot with someone who is 6’5” Is a talent Kylan and I got good at with our first child. Luckily we didn’t have to use those skills of ours because the nurse saw the bags under my eyes and ordered us a twin size hospital bed to share. However it couldn’t fit in the room without moving out the crib so we still had to squeeze the three of us and a DockaToT into a twin!
The next morning I woke up ready to get outta that place. They called us down for her echocardiogram around 8am to make sure the plug was still held perfectly in place. After fighting to get her to hold still and quit crying they were able to see what they needed to and they ordered our discharge papers. I watched the echo a time or two and just thanked God for modern medicine and Goldys heart of Gold.
With that checked off the list the very next day it was back to fundraising for her hearing aids and further genetic testing which is why I’m posting this a week later than I was expecting. That’s my current reality. Late to everywhere and everything. I just keep telling myself this isn’t permanent. I just keep telling myself I’m so grateful. I just keep telling myself it’s alllll good. I just keep telling myself she’s going to be great. Sometimes it’s easier to say than to believe but it’s a work in progress. So I just keep working on it.