Day 46

Once again, it has been a while since I've updated. I appreciate every one asking how our little Curly Q is doing. This time while she's in the NICU has been quite a roller coaster. About a week and a half ago, they were able to wean Curly Q's oxygen level low enough for her to come off her CPAP (elephant nose). She did great for a day, then the next day she needed to go back onto it. The CPAP provides a level of pressure to allow her lungs to be fully inflated. Without the pressure, her lungs slowly started to collapse and she started to breathe a lot more rapidly. So, after the little bit of progress, we were right back where we started. I've been pretty frustrated with it all, wondering why she hasn't been able to get rid of the mask. Finally, her doctors were starting to say the same thing. This last week, she is 36 weeks gestational, and she should be breathing better than she is. So, they set up more tests to find reasons for why. On Tuesday, they had a cardiologist look at her heart again. This is the third time. The results came back normal all 3 times. On Thursday, they scheduled a scope exam with the ENT (ear, nose, throat) specialists. She had this done a couple weeks ago, and it came back normal. This exam was a deeper one. They took her to an operating room and sedated her, so the scope could go further down. They wanted to make sure her airway looked clear. It looked normal.

A few hours after this ENT scope thing, is when everything changed. I called Curly Q's nurse to see how she was doing and her nurse informed me that Curly Q's temperature was lower than normal. They were just trying to raise her core body temperature. They put warm packs and blankets around her. They even put her under a warmer. The nurse said she was still really sleepy and not really being awake and responsive. Strange. A couple hours later, the hospital called and informed us that Curly Q had stopped breathing several times and she needed to be put on a ventilator. WHAT? This doesn't sound good. WHY? What's going on? No one seemed to know. It seemed like she was having a reaction to the sedation from the scope thing. But the nurses kept saying that the sedation shouldn't be causing this. They really had no idea why she was reacting this way. They did several tests and everything came back normal. No sign of infections. Her lungs were nicely inflated, but hazy. No explanations. She still was really sleepy and barely moving. All night Thursday and all day Friday, she continued to 'Ride the Vent', where she has moments that she stops breathing and allows the vent to breathe for her. Friday night, I went to visit her, she was just laying there, almost lifeless. It was a pretty scary thing. I changed her diaper and she didn't even arouse. She laid completely still, just sleeping. She usually squirms quite a bit, but not last night. She eventually opened her eyes, but still laid there. She was not her normal self and it was scary to see her this way. Normally she's a spunky girl who squirms every time her diaper is changed and her hands are constantly trying to pull out her feeding tube!

Again and again the doctors and nurses had NO explanation as to why she was acting this way. They tested her blood. They tested her urine. Every level of every test came back normal. It's a little unsettling when the doctors and nurses are scratching their heads, not sure what to do. This morning when I called to see how Curly Q was doing, they had more unsettling news. She had stopped tolerating her feedings. She had spit up quite a bit and her stomach measured quite large like she was bloated. So, they've hooked her up to IV fluids and stopped her feedings. They put a tube down her throat to help relieve some of the pockets of air. So, now she's not breathing on her own. She's not responsive and super sleepy. And NOW she's not eating (or being fed). And still no explanations as to why this is happening.

Today, when I went to visit her, she seemed more responsive. She was still sleeping, but she seemed more wiggly, which I was relieved to see. She would stretch her arms and legs out. She seemed like she had a little more life in her, even though she was still sleeping. They had her undressed and uncovered to try and cool her temperature down, because she was a little feverish. I talked with the Nurse Practitioner today and she finally had some news. One of her tests came back indicating that she had an infection. They had already started her on doses of antibiotics. They weren't sure what type of infection or where the infection is though. Hopefully the antibiotics kick in and she can get back to normal soon. They still are doing some tests and monitoring her closely.

We've had a wave of a million emotions. Confusion. Frustration. Anger. Scared. Worried. Helpless. I'm just grateful for the medical technology to take care of her. I'm also grateful for feelings reassurance and comfort that comes from prayer in times of uncertainty.