What a weekend! 6w2d old

Ella, a few minutes after we walked in Saturday night

44 days old/days in NICU

Weight: 4 lbs 4.5*
(this weight is not completely accurate due to fluid, extra blood and the IV)

It's been several days since I updated. The end of last week wasn't too exciting, just normal happenings. On Friday night, I stayed over. The plan was that on Saturday, Shane would bring Zilly the cat to the vet, then come over to the hospital and we'd spend the day at the hospital at the Ronald McDonald house and trade off seeing Ella. Saturday morning, there was a TON of snow and it was storming so it was taking a lot more time for Shane to get things done. I ate breakfast and was feeling just really down, so I sat in the Ronald McDonald house and drank some coffee while the storm was going on. I went back into Ella's room at a little after 11:00 AM. Sometime around 11:30ish, give or take, her O2 all of a sudden starting dropping DRASTICALLY. She was in the 50's for what she was intaking so the nurse kept turning up her O2 percent. She had her all the way up to 100%. Ella was usually on 45-55%, which is still higher then they would have liked and was something they were looking into. The 100% wasn't working, so her nurse turned her up to 2.5 liters pressure. This went on until she was up to 4 liters and 90% O2. I was frantically trying to call Shane to tell him to find somewhere to bring Olivia and get to the hospital immediately.  Just before noon, she had stabilized at 4 liters and 90% O2. I was in an absolute freak out mode. She was pale and unmoving and none of us could figure out what was going on. 

Shane got there and Ella's nurse, Deb, said was saying that she was sure something was wrong with Ella's nasal cannula. She looked in the hallway and saw a RT (respiratory therapist) and asked him to come in Ella's room immediately. She told him what was happening and said she thought she heard something and thought something was wrong with the cannula. He poked around a little bit and said it was fine. Shane and I both felt at the time that he had kind of blown it off because he was in the area for a different baby. But, RT made the call, so time to move on. The doctor got an X-ray taken and we were all thinking it was pneumonia or the CLD (chronic lung disease) but the X-ray was actually remarkably clear. If you remember, Ella had gotten an X-ray about a week ago and it was WAY better then that one. Which totally stumped us all because we were SURE it was related to her lungs! They drew some blood work and when that came back, her RBC (red blood cells) count was very low as other things related to the oxygenated blood in her body so they decided to do another blood transfusion (count 'em, this makes FOUR!). The doctor also said that something in her blood (I keep forgetting what it's called) that can be indicative of infection was elevated so they were going to start her on antibiotics. She also said that the symptoms that Ella  was exhibiting could be meningitis so they would do a spinal tap. Once the doctor made the call, things started happening really fast.  


There were 3 nurses in and they discussed the order in which everything would happen. They started prepping for the spinal tap. They recommended that we leave during it but we chose not to. I told them, If my baby, who can't understand what's happening, has to experience this physically and mentally, then surely I need to be in here to experience it with her. If you've never experienced a baby getting a spinal tap, pray to God that you never have to. They gave her a pain killer and a sedative and the scream that came out of my precious baby's mouth...it was horrible. Shane jumped and I started crying the minute she made that noise. At this point, her O2 was down to 70% but it jumped back up to 100% during the procedure. It was pretty awful. Then they started the transfusion and the antibiotics. 


I'd asked the doctor earlier if we'd end up in the level III NICU again and she said no, that probably wouldn't happen. As the day went on, she just kept getting worse. She was so pale. It didn't look like there was drop of blood in her body. She literally looked like a dead person in her incubator. The doctor was trying to get  a response from her and she couldn't. Ella was completely unresponsive to stimuli. She was still breathing and everything internally was working, but she was incredibly sick. Dr. Camp told us that if they couldn't get her more stable, she would end up back on the ventilator in the NICU. After she told us that, I completely lost it. I'm talking curled-over-sobbing-uncontrollably lost it. I really felt like I had reached my breaking point. After my little melt down, we decided to take a walk over to the Ronald McDonald house. Ella's O2 saturation was okay on the 4 liters and at 90% and I'd hit my breaking point. I wrote down our numbers and the nurse promised she'd call if ANYTHING changed at all. We were about 30 seconds away, down two hallways and I needed to breathe. 


We got there, sat down and were just numb and worried. We didn't know if it was infection or if she'd end up back on the ventilator or what was going on. We weren't in there too long and Shane went over to check on her (around 8ish). He came back and said they'd replaced the cannula and she was starting to drop in her O2 needs. Instantly I yelled "BUT THAT'S WHAT DEB SAID WAS THE PROBLEM BEFORE!!!!!!!!" I was absolutely livid. LIVID. I couldn't believe it! We went over there and her nurse who was on now, Anne, said that they'd replaced it and thought there was a problem with it. I told her I was super angry because Deb had called RT in earlier and they'd said it was FINE! After talking with Anne (the nurse) about it for a bit, we decided to leave again to get something to eat. We came back about 10 or so minutes later and Ella's O2 needs hard dropped from 90% to 40%...in LESS THEN 30 MINUTES. We walked in and I saw two little legs kicking straight in the air, bright wide open eyes and a pink little baby staring back at me. She was totally fine. It had been the cannula after all. She'd also needed the transfusion because her RBC was REALLY low but other then that, the only issue was that the cannula was defective. Today, she's on 3 liters of pressure and at about 40% O2. The doctor is bringing her down .5 liter a day to make sure she can handle it okay but she's pretty much 100% better. I talked to the doctor about it today and told her I was "Extremely angry because this all could have been avoided" (except the transfusion). She was pretty upset when I told her and promised she was going to figure out what was going on, who it was and get back to me. Deb saved the cannula so that it can be tested to see what was up with it. 


Thank God Ella is okay. Thank GOD she wasn't deprived of enough O2 or for long enough to sustain brain damage but I can't tell you how terrifying Saturday was. I was absolutely beside myself with terror and grief. I was reliving what happened on That Night when Ella was 4 and 5 days old plus living through what we were currently experiencing. We got to kangaroo that night and I ended up staying until Monday night to make sure she was stable and fine. They had drawn some blood work and done some cultures on the spinal fluid, blood and urine and nothing grew on those, which means no infection.