Wow. What a whirldwind this morning was. I can't believe everything that has happened today! We woke up around 7:00am this morning to the charge nurse coming in saying, slightly frantically, "Mom, we're moving you now, next door to the sisters room and they are also prepping sister for surgery." We rubbed our eyes and said... "what? Ok." and started our day of trying to wrap our head around all that would come.
Lydia was moved yesterday (01.06) afternoon to Le Bonheur to be with her sister and at the time, assess the state of her PDA since she had already gone through two courses of indocin, surgery was the next step. Last night we spoke to the cardiovascular surgeon, Dr. Goldburg, who said that she was definitely eligible for the surgery and explained to us a bit more why he believed it would probably be best to do it tomorrow (today.) He explained that her echo's were showing a bit of strain on the left side of the heart from all the work that it was having to do. He also assured us how quick the surgery would be, how the procedure would go and that it was something that was done often. The surgery to fix her PDA would be using either a small surgical tie around the PDA to close it or using a small metal clamp to pinch it off. As with all surgeries, there are risks he had to warn us of and these are things that are hard to hear but a reality nonetheless. The last thing he told us was that he was taking her name down to put on the board, that she should feel a lot better after the surgery and that if we needed anything just to page him, even at 2am! We joked about paging him at 2am to ask about something dumb but we didn't do that for sake of him not falling asleep during Lydia's surgery. We went to bed with the thoughts of surgery plumb fairies dancing in our head... ok. not really. Just AB alarms going off at Penny's bed.
That brings us back to paragraph one. After we started pulling ourselves out of sleepyland, trying to grasp a bit of togetheredness, we threw our things in our bags and started walking it all down the long three rooms away. While we were moving things to the room, we began seeing all the prep work done next door to Penny's new room. Lydia's room was being prepped for surgery, carts, drapes, surgical tools were all about and being sorted. Doctors and nurses in their surgical attire, darting around for the work that was about to be done. We knew they had planned on having it soon but we didn't realize it was going to be THAT soon! We spoke with the anesthesiologist, again giving us the run through on the surgery process and what the expected positive outcomes would be along with the unexpected negatives. We've learned that in medical world that the saying about medicine being a "practice" seems to be true. They practice what they know and have studied with hopes that the outcomes are the same, but sometimes there are variables. The surgery was to last about an hour long and after putting away things and taking a moment to reflect on what was about to happen, we decided to leave from next door to not worry ourselves to death over the procedure. We corralled ourselves to the cafeteria and had a bit of breakfast, chatted a bit about learning to deal with these stress inducing moments, especially if both of them have something because we tend to worry more for the first one than we do the second one, then took ourselves back upstairs to Penny's room. By the time we sat down to reply to some comments about the surgery, Dr. Goldburg was back in the room saying he was done. WOW! That was fast!! We were told that everything went smoothly and that they chose to clamp the PDA with the clip. Along with the clamp, a small incision on her left side under her arm and towards her back, will be her battle scar. They said it won't grow with her and will stay small her whole life. It's incredible these surgeries. The whole surgical team was amazing as well as kind and we probably will be seeing them again soon since Penelope requires the same thing. All of that took place between 7am - 11:30am. We let the nurses clean things up a bit and then went in to sit with Lydia. It was strange to see her so still and not moving but we sat with her, holding her little hands.
As the day continued, we Penny decided that she wanted some attention of her own and started having some A's and B's (apnea's and bradycardia's) dropping her vitals down to the 60's on HR and SpO2. It's still so unnerving walking up to the bed with all the alarms sounding and seeing her just laying there not really breathing and the color changing so light. We've both started learning the little tricks to help bring her out of the spells and help her remember that she needs to breath. Her numbers are starting to settle with the new insulin and the doctors are balancing out the right amount of sugars to give to her so that she doesn't drop too low now. That's the current issue is that at around two hours, her glucose levels drop, varying from 50s to only going down to 100's. She hasn't had any massive highs yet but we spoke with an endocrinologist yesterday that said that things might start changing once the dosage of food she is getting starts to increase as well as the transition in to eating more like a baby. Her numbers might begin to spike at the times that she gets the big push of food as if she were eating from mom. So right now they will continue to play the number game and keep her stable on the glucose numbers. As for her PDA, the doctors aren't seeing the physical signs that she needs to be showing that warrants the surgery, though with all the A's and B's she has been doing, they will be evaluating it.
Today was a good day of sitting with the girls and enjoying being together. As you'll see in a pic, we're nice and close, not quite as close as before but significantly closer than driving across Memphis. Lydia is recovering in the twin room while in an adjoining room, Penny is being kept and monitored. There is a sliding door that can be modified to swing wide and open the two rooms up in to each other and so I've made it as wide open as possible. It's about as large as a nice downtown flat, all we're missing is the stove! There had been talk about me being a violinist and so a couple of doctors and nurses had been saying that I should bring it up to play for the girls. Well, I didn't realize it had been set already but a number of people said that they can't wait to hear me play on Sat. I realized that somewhere along the way someone had set up a time for me to play and I didn't realize it! And so, this evening a few hours before shift change, while things were nice and calm, I played a little show for the girls, sitting in swivel chair between the two rooms, enjoying the time that I was getting to have with them. I'm thankful that I was set up for a time to play because it was medicinal for my soul and heart to share some music with my children out in the open air for the first time. To see their stats hold steady and calm while I played and to see them react the same way as they did in utero was quite amazing. I will definitely be bringing more music to play for them as time goes along... I've got to brush up on some pieces!
This evening has brought some interesting changes for Lydia. Bethany and I had gone out to dinner and around 8:30pm, we came back to find that Lydia was extubated and all the breathing equipment changed again to her low flow nasal canula. She looked great and was responding great which was so encouraging for us! It was nice to see her face again without all the tubes down her throat. We watched her for a while, intrigued by every little twitch that she made because of the anesthetic continuing to leave her body. We put her little bean bag nesting pillow on her and she slept nicely and less fidgety. About two hours pass when Bethany and I noticed that Lydia had begun to flail some. It's normal for preemies to do this because we were told that they do this because they're nervous system isn't fully developed and they're supposed to be still encased in fluid, they have a sense of falling and so they flail around. We went up to her to try and comfort her some by putting her hands on her face and head and tucking her feet up. That did nothing. She just keep moving her mouth open and making wheezing sounds. We figured out that she was trying to scream but nothing was really coming out but that wheeze. For the next hour or so she had these fits. The doctor came in and check on her about half way through and said that it was probably irritation from extubation. She was showing signs of pain along with the flailing so he ordered a breathing treatment and some pain medication to try and help her rest. He also had an x-ray done just in case that there wasn't something else wrong that was inside. The x-ray confirmed everything was normal so we continued to watch her attempt to scream and flail for a bit and then as the meds began to kick in, she started to calm. It was difficult not being able to do anything to calm her down, we tried and tried but one of the nurses said that even though it might be trying to calm her down, it might be also irritating her. That was hard being told that what we were doing was probably bothering her more. We just wanted to try and comfort her.
Things are finally quiet with the occasional alarms from the monitors. Bethany's asleep in the other room with Lydia while I'm in the room with Penny. Listening to the bubble CPAPP, knowing my daughter is breathing is comforting. It will be weird being at home with these two with now bells ringing to let us know that their breathing has slowed some. For now, I'll enjoy every single noise that is made.
Lights out from Le Bonheur NICU.
A couple of photos from the past two days
A rare glimpse at Ms Penelope's face
Everyone getting prepped for surgery
In the middle of the process
Super Deluxe Condo rooms
Playing for the girls (photos by Sarah our nurse)
Enjoying some music.