Wait, I thought she was done with these open heart surgery posts.
So when I left you, Regina’s heart repair had been declared a success. Scott and I went out for dinner and drinks with my sister and brother-in-law to celebrate. In my mind, the toughest part of all this was behind us now. The rest would be smooth sailing into more typical baby experiences. I’m not sure if I’ve ever been more wrong in an assumption in my whole life.
We got all checked in and settled into our hotel and after checking on Regina one last time in the CICU (still out cold), we went to the hotel to get our first good night’s sleep in a while. We awoke early the next morning feeling refreshed and walked straight to the hospital. Regina was still on the ventilator, and the CICU nurse directed our attention to the ventilator monitor screen. The waves on the screen were green, but were occasionally replaced by little pink wave lines. The pink ones were breaths Reggie was taking on her own, she told us. She was still asleep, but Scott and I talked to her as an experiment to see if we saw more pink on the monitor. The experiment was inconclusive.
We went to my parents’ house to see our girls, whom we hadn’t seen in a few days. It takes about an hour to get to my parents’ house from the hospital. By the time we got back, Reggie was off the ventilator and breathing on her own so they had removed the breathing tube! She still had the pacing wires in because her heart had been having an irregular rhythm. By this time, she hadn’t had anything to eat since Sunday night, and it was Tuesday afternoon. That girl was hungry. They said that I could try and breastfeed her. So the CICU nurse very slowly and painstakingly lifted Regina off of the bed, countless cords and tubes hanging from her and all, and placed her in my lap. I tried to feed her, but the second she got in my lap she started acting uncomfortable and restless. So I quit trying to feed her and tried to comfort her. Then, she started crying. I started rocking her and singing to her. Shortly thereafter, she had escalated to screaming and wailing as if she were in excruciating pain. Nobody around me seemed to notice, so I figured this was normal post op stuff. I desperately rocked her and shushed her and sang to her. I asked the nurse if she thought anything was wrong. She said no. So, I continued to try and soothe her. And she continued to scream bloody murder. I asked the nurse if there was anything we could give her. The nurse said she was maxed out on all of her pain medications. For two hours, I held a screeching child obviously in terrible pain and there was absolutely nothing I could do for her. I wanted to chew my arm off and run out of there screaming. (At this point, my Abuela would say, “Qué exagerada eres!”) I put my hand gently on her chest to try and keep her from thrashing right out of my lap, and quickly noticed it felt about the temperature of molten lava. I anxiously told the nurse, who took her temperature. I don’t remember what it was, because they use Celsius at the hospital, but the nurse started looking concerned once she saw the number and took her out of my lap as quickly as possible and put Regina back into the bed. She asked Scott to help her hold Regina down (an impossible task, as you couldn’t touch her chest) while she turned turned the big fan on and checked the medication schedule to see what she could finally give her. She said fevers post op were very common, but a fever that high was not. She gave her ibuprofen for her fever and some Versed and Regina finally passed out in sheer exhaustion.
I excused myself and ran out of the CICU as quickly as my legs could carry me. I went straight into the bathroom. I was so distraught I thought I would be sick. I just crouched on the bathroom floor and bawled my eyes out. Helplessly holding my screaming child in so much pain had emotionally exhausted me. I wanted to tear my hair out. There can’t be much worse than watching your child suffer so much. If there is, don’t tell me about it. I don’t even want to know. I was too weak to even handle that.
I finally was able to compose myself so that I could go back in. Scott was with her, and said her fever had gone back down. The Versed and morphine that they had given her had knocked her out, so she was sound asleep. We stumbled back to our hotel and passed out ourselves.
By Day 3, I got a call very early in the morning from the CICU. We were still getting dressed so that we could head to the hospital. “Your daughter has something called chylothorax,” the nurse said. I felt my stomach plunge to the floor. “Her chest tube started draining chyle. What it means is that her thoracic duct was damaged during the surgery, so she is going to go on a special no fat diet for two months until it heals.” “I know what it is,” I said. “Thanks for letting us know. We’ll be there shortly.” I hung up the phone, feeling numb. My mind started racing. For five months now, I had been trying to get her to breastfeed or even take a bottle. We had been making tiny strides, but I had been counting on making large ones once this surgery had been done, since her struggling to breathe had been our biggest road block in getting her to eat by mouth. Now, she wasn’t allowed to breastfeed at all. For two months. Which means I would be starting to try and teach her how to breastfeed when she was practically seven months old. Which is absurd and makes our already dubious feeding situation completely impossible. She was going to be tube fed for the long term now for sure. There was no way I could tempt her to eat by mouth with a disgusting no fat formula. I relayed to Scott what the nurse had told me on the phone, excused myself, and went into the bathroom for Round 2 of Sylvia bawls in a bathroom. All I could do was cry and mumble the word “no” over and over again to myself. All of this work trying to get her to eat for nothing. I finally managed to get back on my feet so that we could get to the hospital. I didn’t know why God had made our cross a bit heavier, but I offered it all up.
When we arrived at the hospital and I told the medical staff my feeding concerns, not one of them was in the least bit sympathetic. They either didn’t know what was at stake or just didn’t care. I was beside myself. I texted my wise friend Blythe to whine about it all because I could feel that I was blowing this all out of proportion and I needed someone to talk some sense into me. I couldn’t have made a better decision. “She had open heart surgery three days ago,” Blythe sagely said, “That’s no time at all, recovery-wise. Why don’t you try and have no expectations for now. Give it until Sunday to feel frustrated.” I reflected on that, and found the advice sound. A five month old’s recovery from open heart surgery was going to be difficult enough. I didn’t need to exacerbate things for myself by putting all of these expectations on her. First, let’s tackle healing from this tremendous trauma her body has just endured. Then, we can tackle feeding. I would just have to sit tight and practice more of the virtue of patience. I waited this long.
She kept spiking incredibly high fevers, so they put on her some heavy duty precautionary antibiotics, even though all of her cultures were coming back negative. Her pacing wires were able to come out as she hadn’t had any rhythm issues for a few days. Her chest tube was still draining, so it looked like she would be heading to the CSU with it still in. Her pain was still out of control. Usually, a post op patient would be in the CSU now, but they didn’t like to send her there while still on so much morphine. She was also still on oxygen. Since she was in so much pain, she wasn’t taking deep enough breaths, so it looked like she would go to the CSU while still on oxygen too. So, off the the CSU she went. We packed our bags, checked out of our hotel, and headed there too to stay in her room with her.
She finally got her chest tube out by Day 5, which was an enormous relief to us all. She had been extremely uncomfortable and agitated with it in, and the constant loud gurgling noise coming from the machine made it very difficult to sleep. She was also able to get her oxygen nasal cannula off and breathe room air. We managed to stay on top of her pain with Lortab and ibuprofen. But we had to stay until Monday at least to finish her aggressive round of IV antibiotics.
My brother would come to the hospital after he got off work to take us out to dinner and bring a little levity and laughter to our hospital life. I am eternally grateful to him for that, because we were feeling pretty exhausted and beleaguered. Regina’s medication dosing machines would loudly beep until 1 am. Phlebotomy would come in at 4 am to turn on all of the lights and start digging around in my daughter’s arms with needles, which, of course, would make her scream. Then, after I had finally settled her back to sleep, radiology would come in at 6 am to take her downstairs to get an X ray of her chest. Then, our heart surgeon would stroll in around 7 or 8 am, and act like we were the laziest people on earth to still be dead asleep while he is trying to make rounds. I would jump off my couch, try and smooth my hair down and pretend like I was able to keep up with everything the heart surgeon was telling me about Regina’s recovery while barely being able to keep my eyes open. Meanwhile, Scott wouldn’t stir from his couch at all and slept through the whole thing.
On Monday, May 22nd, a week out from her open heart surgery, they sent us home. I thought that our adventure was ending, but little did I know it had just begun.