Monday, Monday ...

So, yesterday was a pretty stinky day. We'd come off what was a pretty successful week. In fairness, they'd told us we'll have good days and bad days, but even when you know a bad day is coming, you're still not prepared.

It started at 5:30a with a text from Jon that Ian had woken with a fever and sore throat that looked like strep. He would take the day off and get him in to the Pediatrician. A rapid strep test indicated he did indeed have strep, so it was off for a RX and home to bed. I wished I was home to take care of him and at the same time, concerned about being around him for fear of bringing anything back here to PCH. But hopefully after a couple of days on antibiotics we'll be back on track.

That morning I got to the hospital and they were doing rounds outside her door - good timing, Dr Gutierez was the attending that morning. Always good to see him.

But then I saw her. My nemesis. Maude* (name has been changed, lets just blame HIPPA, LOL) She was our nurse on Friday as well, and as my Dad put it, she just doesn't instill confidence. We'd had really good nurses here - and while I'm sure if I met Maude at church, or the mall, I'd think she was totally great, but unlike the other nurses we've encountered, there's no warm connection to Maude, but rather someone cold and awkward. Friday, I was pumping behind a curtain and overheard her say in a sweet yet confused tone, "Huh, when did that shut off, huh, ... how did that happen? Sorry, baby." OK.... If there's anything you DON'T want to overhear your nurse say, it's "Huh...how did that happen?". I didn't dare peek around the curtain to find out. she acts a slightly put off when the bells and whistles go off, as if Ainsley is really doing her best to tick her off. Spending another day with Maude was not what I had in mind. Must be Monday... Here's to hoping I don't have enough material to pen a book called "Monday's with Maude".

Anyway, Dr. Gutierez and his Residents were having a general discussion of head ultra sounds on pre-term babies under 34wks and why they do them, etc. As they did, they came into the room so "mom" could hear to. (I think it's so great how they include parents in as much as possible) After the discussion, he sent the Residents along and he sat down with me. He would draw me a picture of the brain to follow up the discussion. As we talked, he said "I'll tell you a story that will help you be less worried". (I assume he thinks this is possible. Ha!) He spoke of a very small baby who'd been born and his mother contracted chicken pox. The baby then contracted chicken pox and recovered at about 2.5 weeks old. However, after chicken pox, the baby got whooping cough. Eventually, they sent him home with the family. He wasn't responding and would likely pass. The family took him home where they had a coffin for him. But his mom continued to say he would be fine - she would feed him drops of milk between the outburst of coughing. They called him the little black baby because as we would cough uncontrollably, he could get no air and the brain had no oxygen. He would turn a dark purple. Then he would slowly start to breath again. This went on for several weeks until eventually, the baby began to improve and eventually was at full health. Of course, the baby was Dr Gutierez. His message was to be positive, have hope... things sometimes look bad, but they will be brighter. He said, "She has a mission ... I don't know what it is, but there is something for her to fulfill. Might take 6 days ... 6 years ... 85 yrs. I don't know. But she will do it " And then, he told me he was leaving for 4-5 days to speak at a conference in Mexico. "Booooo" (insert deflating balloon sound here.)

Back to the Monday Blues and background info:

Sunday afternoon Ainsley started these random drops in her Heart Rate... we've really focused more on breathing, so heart rate trouble was not welcomed. She was working harder to breath and her O2 level was increasing. Truly, she's just so little and everything she does right now exhausts her.

Monday morning when I arrived, they'd moved her from the cannula to the C-PAP, what I would describe as a mega cannula with a face mask. It looked terribly uncomfortable - more so than the IV in her forehead or the blinders she wore around the clock for days while under phototherapy. Throughout the day there were more dips in the HR, more struggles with her level of O2. By the end of a very long day, we were back on the ventilator, had another blood transfusion and the arterial line was replaced for the greater qty of blood draws. In words of Paula Abdul and MC Skat Kat "Two steps forward ... two steps back"

It was too much for one day - I think I've handled things fairly well, but I confess that I just had a hard time keeping it together - emotions were at the surface all day and anytime a kind hearted Dr or nurse would as if I was OK, the tears would come. ACK! I've said it before, I'm not opposed to crying and I welcome those moments so I can just release and move on... but really, I'd rather do a major out pour of tears than small ones, they just take too long and it never fully stops. I feel bad crying in front of people because I think it stresses them out just a bit... Not my intention, and really truly, I'm OK, but sometimes you just need to cry. Anyway, there was a lot of crying yesterday. (I confess this just so everyone knows I'm not trying to hold it all in... not to worry, I'm not afraid to cry.)

Typically I love watching medical procedures, but watching them put the vent tube in was a bit much... watching the numbers on the monitor, watching them squeeze the bag as her vitals dropped was really too much. I wanted to be there, but at the same time wanted to be someplace else. I was relieved when it was all done. I'm sure she was too. As a general rule, the fewer people in the room the better. More people means more problems being fixed. I'm quite content when it's just the two of us in here. She's not saying much now, but I guess that just prepares me for her teen years.

By Today, she had begun to stabilize again, numbers more on target. The blood and secretion cultures had not shown any growth as of yet, good news. Her hemoglobin levels were back up after blood, white blood cells were good, etc. They did follow up head ultra sound which was read by the NeoRadiologist and it was clear, not even Grade 1. Hooray! Let's face it, other things can be fixed, but brain hemorrhages are just not good. the heart scans also came back great. Good news. *sigh of relief*