But how are you??

Philo and Lou update 12:20 am Wednesday:

Philo is the same. He went down a setting on cpap and then had to go back up because he was working too hard to breathe. One of these times he will go down and it will work and he will be getting better. It isn't happening yet. He had another blessing tonight. He's got to improve at some point. We've seen five kids or more come and go from our shared room. They improve and go to the infant ward, which is hopefully where we are destined shortly.  If you'd all adjust your prayers about ten feet to the right maybe they would hit Philo instead.

Tonight he is the exact same. They had to take off the mask to suction and I was able to get a picture so I could remember what he looked like without his darth Vader mask, but it went right back on. He wakes up and gazes. I love him! 

I'm doing about 18-21 hrs a day at the hospital bc I have to pump every three hours. I take naps next to him in the chaos and upstairs in the private completely dark Ronald McDonald room (no fries), two hour limit.  BL is at home, Danny comes when he can, my friends occasionally come and hold, that's when I nap. That's my life.

Betty Lou's respiratory system seemed better this morning. She is able to hack and move mucus, so she sounds congested but isn't feverish. She's handling the illness better than the baby baby. Danny took her to the doctor for her arm this morning and he popped her dislocated elbow that happened last night back in. 

She wailed 3am-8am but I understand she's using the arm again and less crying but I haven't seen kids 1-4 since yesterday morning.  I don't like to leave my baby. I worry too much and it's not worth the time anyway because I have to pump incessantly.

We brought the kids to the hospital last night so they could feel comfortable about where Philo was and generally how he is doing. They can't come into the room but they got a big kick out of the features of this children's hospital: movie room, walls you can draw on, toy and art rooms, cafeteria. We facetimed Philo from right outside the ward.  They miss him very much. We didn't bring a stroller for Lou and her arm was hurting her (yes, on top of her RSV) so we wheeled her around in a mini wheelchair like the princess she is.

Mimi 9, Jude 7, Silas 6, Lou 18 months with her hurt little arm tucked in her jammies.

Philo and Lou update 9:30am Monday:

Philo vacillating back-and-forth between BiPAP and CPAP. The doctor said he would do this for the next 24 to 48 hours hopefully going to high flow oxygen sometime within that time. When we get to tolerating high flow oxygen well he will be moved to the infant floor.

Lou had a rough night. She was thrashing in her crib and wheezing when I checked on her so I treated her and she seems to be stable now. 

There are two modes when in crisis: feeling and functioning.  I remember when my brother died and I was at headquarters with my shell shocked parents there were hours during which they walked around the house while I needed to be in action mode calling people and helping with functions. Only when I was alone would my head switch unexpectedly to feeling mode and out came the tears. 

During this "trial" I am in function mode. I have to do the things, all the things. I have had an amazing amount of help and my friends have rallied around me and my family but I am still the captain of the ship telling people who needs to be where when. My husband and I are like ships passing in the night but that is what makes us a good team. But he has to work so I am making the day plans because that's my job.  That is what mothering looks like. I have to communicate quickly and clearly because I am needed in two places at once.  I can't leave my children, any of them. I need to be comforting Jude who is feeling this acutely, Silas who is in a fog, and Mimi who is being a perfect angel.  These are their coping mechanisms and I am all too familiar with them; they've seen a lot those children.  I need to be next to LouLou to comfort her and give her care because sick kids need their mamas. And of course, I need to hold Philo so he knows he isn't in it alone. I can use surrogates for these jobs intermittently, but the fact is they all need me and Danny. They need us both all the time to support them through this because it is their trial as well.  And so I am functioning.

The functioning is only going ok. I can't plan very well. Maybe I should be better at this. People offer their help but I can't schedule it at the right times. In trying to avoid redundancies in baby holding time and snacks I end up screwing it all up. I worry that I am rude and consistent or chaotic and I apologize.  The kids took showers last night and this morning I realized one hadn't washed the shampoo out effectively. It's little things like that. No phone charger at home, they're all at the hospital. One piece of the breast pump away from the other pieces. Ugh. When I'm doing one thing I fret about the others. When I'm helping Betty Lou I am distracted by thoughts of Philo.  I'm not complaining or asking for help, I'm just saying what is.  This is what it's like having two very sick babies.

One baby in the PICU wasn't enough? It's not enough to spend 11 straight hours in the hospital and then come home to a 17 month old thrashing about in her crib and wheezing? 

I know how to help her, I'm grateful for that. But I don't want her to need help! I want both babies to be well.  So I function.  I give her tylenol and albuterol from her previous RSV episode. I listen to her breathing with a stethoscope that I own and I know what to listen for in her lungs.  At Philo's bedside I have learned all the numbers and terminology.  I hate that I have to know all of this stuff.

But when I walk through the halls of this hospital I am alone. When I get in my car it's not loud enough and I can hear my feelings. being in the PICU is so jarring because there are so many sick children in here and so many sad parents and if I look at them I will worry about all of them. I walk through the halls with blinders on. If you come here I recommend you do too. Every family member who has come through to see Philo is hardly been able to speak because it is so overwhelming.  

And the wave crashes over me, hard. Every moment of my baby's life is wires and tubes this week and I am dying inside over it.  Every time he takes a breath of opens his eyes there is the apparatus.  I am well aware that people deal with much worse and for longer but this is all new to me and it's my baby. My tiny tiny baby who just learned to smile but hasn't done so since we've been here.  He's baby sad face. I can't look without crying and I don't think I will ever get used to it. Could you?

He will get better. But right now this is what it is. And his cry is heart wrenching.

So I'm doing my life like this: 

This is the best I can do. I'm just pretending to be an expert emotionally stable human. That's how I'm doing.

My mom told me once that "You're only as happy as your saddest kid." Never truer for me than now.