Yesterday was horrible. Quite possibly the worst day I have ever had. Lucy has been doing so well. Gaining weight, less and less apnea episodes, eating well. No major problems. Life was starting to take a turn for the better. Then this roller coaster we are currently on derailed. It went flying off the tracks and crashed. Here is what went down yesterday:
10:30 pm: (Wednesday night) Mike and I visit Lucy, she is doing great. We were both able to hold her, snuggle her and kiss her. She was thriving just like she should.
7:00 am: I call the NICU like I do every morning to see how Lucy's night went. The nurse tells me to call back because the doctor was examining her and he didn't have a report yet.
8:30am; I call back. They tell me Lucy was having lots of apnea spells (where she stops breathing) and they needed to put her back on CPAP. They also informed me that she needed another blood transfusion (this is number 4) because she is anemic.
10:30 am: Mike and I go and visit Lucy. Even though she was on the CPAP she looked okay. They had started the blood transfusion. She was crying and pretty much pissed off that she had to be back on that machine and had IVs in both arms. All things considered she was doing okay.
2:15 pm: Picking the girls up from school my phone rings and it was the doctor. Lucy was not doing well. She started having more apnea episodes and they had to put her on a ventilator. At this point I started freaking out.
3:30 pm: I arrive at the hospital while Mike stays with the kids. I walk in to find 3 respiratory therapists, 2 nurses and the doctor all swirling around Lucy. I just sat down and sobbed. There was nothing I could do for my sweet baby. They informed me that she has some sort of infection and they are trying to determine where it is.
4:45 pm: I step out of the NICU to try and calm myself down. Mike meets me and we go back in.
5:00 pm: They had to switch the vent machine because the first one wasn't working for her. They had her at the highest settings and 100% oxygen. The doctor informed us that this was the most they could do for Lucy. Basically we were up against a wall and there was nothing else we could do except wait and see if any of this would help her.
6:30 - 8:00 pm: The NICU unit does a shift change and parents are not allowed in there. Mike and I sit directly outside of the NICU door and impatiently wait for 8:00pm.
8:01pm: We go back in. Lucy's heart rate was high, in the 200s usually it's in the 140s. Her oxygen was at 85% and the settings were still high. Her blood gases were coming back high. The doctor again just told us to wait. That it takes at least 3 days for the anti-biotic to take effect. They gave her a dose of morphine to sedate her and hopefully bring her heart rate down and let her relax.
9:30 pm: We leave the NICU to go home and update the family. The entire time we were gone I was so scared my phone would ring and they would tell us something terrible again.
11:00 pm: We return to the NICU and the mood had changed. It seemed calmer. Her oxygen intake was down to 30% and they were able to lower some of her settings on the vent. Her heart rate had gone back down to the normal range and she wasn't having any apnea spells. We started to slowly begin to breath again.
2:00 am: We return home to get some rest.
10:30 am: We return to the NICU. Lucy was stable. Her oxygen was up to 50%. Everything else was pretty much the same. Head ultrasound showed no bleeding in her brain, which is really good. They stopped the morphine and the anti-biotic were starting to take effect. The doctor informed us that there was some sort of bacteria in her blood and because of that they are going to have to perform a spinal tap in the next couple of days to check for meningitis.
12:30 pm: We leave the NICU, dazed and confused.
4:30 pm: Talk to the nurse and she informed us that her oxygen is down to 25% and she is still stable.
I now officially know what worried sick means. The doctors and nurses insist that this is common in most preemies like Lucy. To me this is anything but common. This is hell. This is all backwards. I am scared to death. In the blink of an eye everything changed. I am so worried that we won't get back on track (even though again they assure us she will start to do better by the end of the week) I just have to get through today. Tomorrow is out of my control. Lucy is a fighter though, that is for sure. She is teaching me to stay strong. She is teaching everyone that, because no matter how small you are you can overcome even in the darkest moments.