PLEASE BE AWARE: Further down in this post (starting 8/30/2012) contains post-surgical photos that could be alarming to some.
I had my alarm set on my phone for 5:30AM, but I was up before that anyway. Luckily I was still inpatient, as Anya was only 2 days old, on the day of her first big open heart surgery. I was anxious to get to the NICU and spend as much time with her before they wheeled her away. Surgery was scheduled for 7:30AM, and they said they would likely take her before that. My mom and I went to the NICU and I didn't think I was going to get to hold her, but to my surprise her nurse did let me hold her. I was still holding her at 7:15AM when they asked us to leave for nurse shift change, I was surprised and anxious because they had not taken her yet. 7:40AM I was allowed back in the NICU, and I stood next to her holding her hand for about a half hour before they came in and wheeled her away. I was in tears before they even started down the hallway, and I followed them until they were in the elevator. My baby was going to major surgery.
I went back to my room, cried some more, and then calmed down and ate some breakfast and took a shower. After that, I decided I wanted to try and pump for the first time, but even after 20 minutes I didn't get anything. I distracted myself for awhile watching TV and playing games and checking FB on my phone. My nurse came in and checked on me once in awhile, knowing Anya was in surgery. They were planning on letting me stay in my room until 4PM, because I thought, it being a 6 hour surgery, that I would be able to see Anya by then. That isn't how it turned out.
At 12:30PM, I got a phone call update from the OR nurse that Anya was doing well, but surgery was delayed and the first incision was not made until 11AM, and that surgery would be 5-6 hours from then. She wasn't even on bypass yet.
My nurse came in and asked about updates shortly after that call, and I told her what was going on. Unfortunately they couldn't let me stay in the room until evening, they needed it, so I ended up getting discharged at 1PM. We packed up my stuff, and my mom took it all to the car. We went up to the PICU family waiting room and sat and waited for updates.
At 2PM, I was exhausted, depressed, and had a breakdown. All I could think of was I was supposed to be taking my baby HOME right now, and I didn't even know if she was going to live at this point. I cried for awhile and fell asleep on my mom's lap.
At 3:30, Melanie, the P.A., came in and gave us an update. Anya was stable and doing well, still in surgery and on bypass, and they were starting to warm her. These simple words made me feel so much better.
At 4PM, my mom and I went downstairs to get something to eat. I couldn't stand to sit there much longer. A little while later, MomMom and Poppy Corder got there and sat with us, which made it a little easier, but I was in so much pain from my stitches I couldn't get comfortable.
At 5PM, Surgery was complete, and they were going to start taking her off bypass. Melanie told us to expect it to be at least an hour or two until the next update.
At 7PM, I was so happy to see Dr. Kaushal. He came in and told us that surgery went extremely well, so well infact that he felt like he could have closed her chest, but he decided to leave it open since she would swell more over the next few days.
For the next 45 minutes, Poppy Cordner paced the hallway waiting to see them bring Anya up to her room. He kept giving me updates, as I was in too much pain to get up and check myself. He would tell me when there were a bunch of people standing outside her door waiting, and when people would go in and out of her room. After we figured out she was in her room, we waited about 10 minutes before going down there.
There was so much going on. I nervously waited in the hallway right outside her room looking in, until someone asked "Are you mom?" and I nodded. They asked me to come in, and started telling me how well she did. They told me what medications she is hooked up to. Her nurse Bobbie kept talking to me while she was very busy working on Anya. I looked at my baby, and underneath of everything she was hooked to, I could still see her. She was a little pale, but not blue at all. She was still beautiful. Doctors were going in and out of her room, and her surgeon came in and talked to me again, and assured me she did very well. He said the next 12 hours are critical, but that was she doing well.
Meanwhile, I was in a lot of pain from my stitches. I couldn't stand still, I kept trying to shift my weight to get comfortable but I couldn't. At one point, I went out in the hallway and sat down because I couldn't stand anymore. I was upset because I had waited all day to see my baby, I had seen her for 10 minutes and I couldn't stand long enough to stay in her room. I went back in for 10 more minutes and said goodnight to her, and then my mom and MomMom Cordner helped me walk down the hallway and out of the hospital. Walking to the garage to the car, we saw Dr. Kaushal again. He talked to us some more while we walked, he even slowed down to my painfully slow pace to talk to us for a little longer. It made me feel better about Anya that he cared that much.
It was nice to go home though, because I missed Emoree. She gave me a big hug and kept saying "Mommy, you are home! I missed you Mommy!" This made many things better <3
Thursday, August 30th, 2012
I called first thing in the morning to check on Anya. They said she had a good night and was stable <3 We got Emoree ready for daycare, dropped her off, and I was absolutely content sitting by her bedside for 3.5 hours, there was no place else I wanted to be. My friend Sarah stopped in to say hi and meet Anya, her baby girl is two months old with the same heart defect and still in the PICU.
Under all of this I still see my baby girl. Her chest is open (hence the bandages), she has 3 chest tubes, an IV in her neck and left arm, and lines in her right arm and foot. The tube in her nose is the oxygen (intubation). The patch on her head (and one over her kidney) just tracks her blood flow through the skin in those areas. Her blood pressure was a little low today, but she is on meds for that. Her sats were ranging in the low to mid 70s.
I called at night to check on her before going to bed, and she is still doing well, and they started her on TPN (IV nutrition) and Lipids (IV fats).
Friday, August 31st, 2012
I called in the morning and got another good update. They are talking about closing her chest on Sunday! Dr. Kaushal originally said Monday or Tuesday. She is doing well with draining fluids, her swelling is going down. They took her off of the paralytic as well, but she is still sedated.
When I called in the evening, Elizabeth, the nurse, had said Anya responded very well to me being there with her today!
Saturday, September 1st, 2012
I called this morning and the nurse told me that Anya was taken off of her blood pressure meds overnight, and is handling it very well. She had a blood transfusion this morning too (which is typical during and after surgery). Her oxygen was also decreased to 21%!!
This morning I woke up and felt little hard knots in my breasts, so I decided to pump. It might be drops to someone else, but I was excited to pump 8ml of breastmilk for Anya! I put it on ice and took it in today for them to freeze for when they feed Anya in the next coming weeks.
I was unaware that children under 12, even siblings, are not allowed in the PICU. Emoree was excited about meeting Anya today, and Anya has been doing so well I thought it might be the right time. We were all disapointed to find out we need to arrange special permission through the head nurse for Emoree to come in, and even that won't happen for awhile.
I stayed with Anya for a little over an hour today, because Emoree was getting antsy out in the waiting area with my mom and MomMom Cordner. They took out one of Anya's umbilical IVs today. They also told me that her chest closure is going to be on Monday, not tomorrow. It was nice to see her moving her arms and legs a little. She seemed a little agitated today though, ecspecially when the nurse had to do anything with her. I just have to keep reminding myself little steps, one day at a time.