Love from Alta Bates

Wow, today was very hard and I believe I must have cried for hours and hours, despite the fact that Loki is starting to feel better. Until late in the afternoon Loki looked as miserable and sad as I have ever seen him. One of the nurses today kept looking at the monitor, and since he was satting just fine she kept mentioning how great and happy he was. Bizar, because if she would have taken one peek at his face, she would have known he was feeling extremely miserable. His little face crunched up in a silent cry. I could only stand there paralyzes and wondering if there was any chance in the world I could convince Doctor Sandhu (director of Alta Bates NICU) to take him back. I was deliberating with Mascha, whose visit was extremely supportive, if there is any way we can have a 24/7 team available just to keep an eye on Loki.

This NICU is absolutely awful in my opinion. I knew Alta Bates was one of a kind, but seeing the distinction this clearly is just completely bizar. Some of it may be preference. For example, I prefer nurses talking to Loki when they are about to hurt or disturb him. Or at least comfort him when he is upset. I guess when you look at the monitor and not at the baby you may miss the fact that a baby is actually in pain or sad. Weirdly enough barely any of the nurses at CHO talk to the babies. The lights are bright, there is a lot of noise during the day, and the kids are moved around, poked by needles and often not at all comforted. Compassion is not a concept in some people's dictionary. But then again, some nurses are okay.

Another pretty serious issue; the hygiene protocol is not followed by several nurses AT ALL!!! Noses, faces and equipment are consistently touched without hand cleansing and then Loki is handled, his blood is taken and lines are arranged. This is not just annoying, it is dangerous. I can imagine it is hard to always remember, although Alta Bates nurses do not seem to have that problem. However, almost consistently forgetting is ridiculous at a place with very sick, tiny babies. I asked the respiratory therapist if she could please change her gloves before using a heal stick to draw blood, as she was just hanging up the phone. She walked up to Loki without paying any attention to him, just grabbing his foot, while on the phone and then hanging up. Mascha and I looked at each other in disbelieve. The phone is used by different people and she actually would get involved with his blood stream without cleaning her hands. Fortunately during the last shift we had a nurse who was on top of hand washing.

There are some positives though. The doctors are really, really great. And, Loki was extubated a few hours ago and seems to be doing well on 4 liter high-low flow with oxygen support in the low and mid twenties. Hopefully he will succeed. His blood gases and electrolytes are good. He was laying on his tummy and seemed much, much more comfortable then earlier in the day. Maybe in a few days he will start his feeds again. Other good news, he may have the next surgery within a few weeks, if his kidney starts picking up the work well again. Although SF would be a ways away from home, I would prefer him to have the surgery at UCSF, so we can leave children's. The doctor performing the surgery would be the same anyway, and my thinking is that it can not really be worse then here. Maybe I am jinxing myself though!!

The very best parts of the day, Loki and I received lots of love from Alta Bates today. First, Dr. Sandhu stopped by this morning to see how Loki is doing. Annette, one of our wonderful primaries at AB all of a sudden stood behind me. She was there to pick up a child for a transfer back to the NICU (oh my, am I jealous). I immediately broke down, again..... She brought a very, very sweet card for Loki made by Janet (of course :-) and signed by many of the staff. The card and Annette's hug really helped. Magic, the RT (respiratory therapist) was there with her and checked our our little guy as well. Dr. Joanna, who first dealt with Loki when he started getting sick over the weekend, called to check in on him, and said she would stop by sometime tomorrow. During evening round Dr. Anna Uzowic was present. She had Loki for several weeks very recently, and it was just great to see her. Margaret came for an extensive visit. As soon as she was there Loki really, really calmed down, and so did I. We had dinner together at the Cafeteria (which is actually better than at AB NICU). It was so wonderful to see her and get some of her ideas on how to help Loki, and myself, feel calm in that crazy environment. Blanca stopped by, which is amazing to me. She is incredibly supportive and like Margaret, listened to my worries and hefty complains (sorry ladies). It must be hard hearing me talk about CHO the way I did, they work together a lot with this group of people. Misty, our AB social worker called me back with some advise on who to talk to (I called her completely in tears). And finally, we received a message from one of our favorite moms at the AB NICU yesterday evening and I saw that one of our other favorite moms called as well!!

Writing this, I realize I am profoundly touched and impressed with the level of support coming from this one place!! WOW! Alta Bates folks you will never be forgotten. (Janet, of course you can come see your little friend, I know he misses you tons and tons, and so does his mommy.

Well, long, ranting message, mommy style :-) Not rereading cause it's time for bed and I am really tired. Apologies for length, incoherency, mistakes etc.