Home again,home again, jiggity jig!

The PICU doctors took Philo off his respiratory support yesterday afternoon by removing his CPAP face mask and test driving him on room air. Usually you have to step down by degree (CPAP to high flow oxygen to nasal cannula) but they just took off his face mask and he did just fine! There were no steps down, he was simply done. So they observed him and one by one the wires came off/out.  I did not barf when the feeding tube that was down to his intestine was yanked out. I was allowed to feed him again for the first time in 8 days. If I never see a breast pump again it will be too soon.

We were moved to the infant wing and then discharged the following morning. I practically danced out of that hospital of sadness.  I don't know how people can deal with the emotions of working there. 

Betty Lou is still fighting this horrible virus. She's been home for the last few days with my mother in law Kleis who has taken good care of her. Because she is so little she has a hard time expelling the mucus so I take her to the suction clinic, or Snot Shack. It's preventative so that her bronchiolitis doesn't progress into pneumonia. She loathes the suctioning of course.

So Children's is still temporarily in my life.  We left at noon and returned at 4. But hopefully we will never be inpatient again.  

I am so grateful for all the help, love and support from all my people. My family feels very loved. I hope none of you ever have to watch your child struggle but I can say definitively that I am tougher now. Where I used to have to avoid hearing stories of people's sick kids because it was just too scary for me I've taken a crash course in empathy. I will be able to parlay these experiences into being a real support to others rather than a big fat coward.

But man, this SUCKED.

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.

Philo in the ICU Information

Sunday 5:30 update:

We are in a holding pattern of a rollercoaster upswing. Philo had a good day overall and the doctors were sufficiently happy with his response to treatment to bring his air support down to CPAP. He didn't like that very much so after a few hours they switched back to biPAP as a preventative measure to keep supporting his body effectively fighting the virus. So we're progressing but not out of the woods.

LouLou had a rough night coughing herself awake and feverish. She's sick but not hospitalization sick.  She came in for suctioning today as an outpatient.

Danny's mother came to town today to support. Jim helped today but had to go home again.  The big children are doing ok, from what I hear. If you see them please report back ;).

Today I am counting my blessings to keep my spirits up. These are my top ten things that I am choosing to focus on rather than be consumed by fear and self pity.

1. Crunch bars.

2. Living close enough to this amazing hospital to go back and forth to home easily.

3. Being on shift for the democratic debate! Why is this bringing me such joy?

4. Being stuck here during a big news weekend. Romney gave that speech like 500 yards from me! I shoulda had him come over and give Philo and the rest of us blessings.

5. My support network, near and far. I feel supported. 

Ok I only have five. Five will do for now.

In other news, the RT is Katy perry's doppelgänger. 

Sat 11:25pm update: Philo has been cresting for the last few hours and I am feeling hopeful we have hit an upswing that will last and we can start working back down the below degrees of sadness chart. His eyes are open and he is peacefully looking around. He has been up and down all day but mostly up tonight. 

When I met Danny he'd just picked up Lou and was concerned because she looked sick. We loaded back into the cars to the hospital and she was checked into the ER with "work to breathe" symptoms. They evaluated her, suctioned her and sent us home with a prescription to the suction clinic run by respiratory therapists. Like a fifteen minute ER for whenever she gets too stuffed up. Miracle of modern medicine. She is home asleep snuggling her humidifier ;).

When I came home my house was cleaned and my dishwasher running and there was fresh milk in my fridge and treats on my porch and my kids were asleep at my friends.  I am swimming in gratitude. My father has asked people to please remember Philo in their fasts tomorrow.

He's fighting. He does best when Danny holds him. He's his good luck charm and he holds him until his arms nearly fall off (please don't happen, I can't handle that too.)

Baby holders welcome during the day. Text me if you're coming but please force me to shut my eyes and not chat.

12:30pm update: Philo had a really rough night. The nurse was with him nearly 100% of the time. His little body is phighting hard. Locals/helpers please text Lacy to coordinate. Most childcare needs covered. I was there most of the night and then took a break to clear my head with Jim who is conveniently in town to ski while Danny sits with Phi. 2hrs of sleep ftw = excedrin and the shakes!

Original post middle of the night Sat Am:

My newborn is in the ICU with Bronchiolitis and RSV. We are on day 3 of his hospital stay, day 4/5 of his illness.  The babies flanking us in the ICU are on days 11 and 13 of their hospital stay, but our Doctor hopes we will be out next week. Maybe.

Our baby is very sick and has like six wires connecting him to as many monitors. But he isn't going to die.

This post is to communicate to my friends and loved ones what is happening so they can worry the right amount.

Philo is 7 weeks old, 53 days. I noticed him with cold symptoms on Monday night.  Right after this picture I saw that he was retracting a little to breathe. His ribs go in to work to intake air. I took him immediately to the ER and asked them to check for RSV.

Basically I'm a doctor now because I make excellent diagnosis. 

(Not only in diseases but also in diagnosing what I think your mental illness is).

We were admitted to inpatient on Wednesday night.

Generic update text:

Baby Philo caught RSV on the plane home from California. He was admitted to Primary Children's ICU where he got a feeding tube and CPAP because he was unable to breathe or eat without choking. So far, he's responding somewhat to treatment, but will likely be in the hospital for a while longer. Prayers appreciated. If you are feeling helpful I can email you our schedule/needs.

Much love!

Ok, here's the nitty gritty process so far.

This is the first level of care: oxygen cannula. He is deep suctioned nearly hourly and I have to leave the room because it's too sad and I can't handle the helpless screaming.

The way RSV works is because it's a virus they have no medicine to fight it so the doctors aim to support and help the body function as it fights the disease.

This is how the virus was explained to me:

So it's a bell curve of unknown length and you only know where you are by whether your baby worsens and needs more care to help breathe.  We have been needing more help every couple of hours all day.

These are the levels of care we have been through. 

In the gift shop there's a little display of "diamond" rings in case you have a diamond ring emergency. I thought that was weird and amusing. My kid's sick! I need a fake diamond ring, stat!

This is the high flow oxygen, level two care. It feels like they're water boarding my baby with air. It took him about 30 mins to get used to it.  I cried the whole time.  Once they put something on it stays on until they increase to the next thing, they don't just put him on air for a few minutes.

He needed hands on attention all night long the first night. He was too busy for the infant floor because of his high need but he has never been critical.

After a few hours of futzing around with levels of high flow we got transferred to the ICU.

At one point (during the transfer) Philo had thirteen medical people engaged in his care at once. Typically he has about five assigned to him (degrees of techs, residents, fellows, nurse practitioners, attending doctors). My favorite people are the nurses who are within 15 feet of him 24 hrs a day and the Respiratory Techs who are real pros in making care happen. The Attending Doctor is the person I trust most, the bottom line.

The Attending Doctor happens to be a friend in our ward! That was extremely comforting. He was direct with us when he was not alarmed at Philo's initial status (a healthy baby, no underlying problems) and on top of it when he did become alarmed. He's a major blessing, thank you, prayers.

This chart is how they evaluate Philo. 

The phrase "work to breathe" is key. Working to breathe is indicated by ribs sucking in, shoulders moving up and down, nasal flaring to suck in, and head bobbing back and forth with each breath.  The more those things happen the more care he needs. If your kid is doing that take them to the ER.  It's very exhausting, using about 30-40% of their energy hence the breathing apparatus.

As Hush says, "This is very off putting." It is really scary to see a baby hooked up to so much stuff and not moving. If I had all that crap I would be so uncomfortable and just seeing it makes you understand how sick he is.  It's generally verboten to say anything about death in hospitals, but it lurks in the background all the time.  My baby is not going to die from this, even if it gets slightly worse.  Babies with complications can die but my baby does not have any. I fear the next step of care, intubation, because it is more invasive and has more side effects. Pneumonia is always a possibility, hence the feeding tube.  I am not allowed to breastfeed for fear of aspirating: choking and fluid getting into his lungs. I have to pump 8x a day and they feed him my breast milk through his feeding tube down into his intestine.

Lacy helped hold for a few hours today so I could nap but I can't sleep. My friends are all being so amazingly helpful despite having just helped me during my child birth. I have so many Christlike people in my world, it's humbling. 

I'm a zombie, paired with worry and post natal hormones. I'm doing my best to be functional.

The other part of this is communicating with the people who love and support our family.  We are so blessed to have a ton of people who care and we need to update them so they worry at the appropriate levels (which are moderate: sad because baby is very sick, not worried he is going to die).  Thus far all of the updates have been "he's getting worse and I am falling apart but everything is being handled".

My father happened to be in town the weekend to ski so he is on duty with the three big kids. Betty Lou is being shuffled by my dear friends when Dad is at work. My father leaves Sunday and my MIL comes then hopefully to be a surrogate me and do my at home life so I can be at the hospital or asleep, trading off with Danny. She will be pushed to the limit minding the four kids so the church relief society is coordinating dinners and general house help. If you want to get in on that (and we thank you) or want to come to the hospital to snuggle a sick baby so we can rest I've made a Google doc reaching into next week I can email to you.  

What boosts spirits? Crunch bars and Coke at the hospital. Texting me about your life so I can be distracted. Sending me funny stuff to look at on my phone because my attention span is that of a toddler.  What gets us extra good care? Snacks to share with the medical people.

Where can I check for updates on how sweet baby Philo is doing? Right here on my blog.  

I can't even look at this sweet face without being flooded with emotion. 

I think that's all the information I would want if my sister or friend had a baby in the ICU. Please use our relief society as points of contact or text me if you're on your way here or something. 

Vaya con Dios.

Record of Operations

Oh, the first few weeks of a new kid in the house.  Some people are trapped at home overwhelmed by the sleep/feed/change cycle for all five kids.  Not me. This is my jam.  Having a new baby and a toddler on top of a kindergartener, first and third graders is becoming my homeostasis. It takes two babies for me to feel like I am sufficiently innundated and unable to accomplish anything but babies.  With one baby you still think you can go places and do things. With two you're like, "Nope. I just keep people alive and that is enough."

But aside from the babies I still have to keep the lives of the other children functioning.  Jude and Si have breakdancing class.  Mimi had a birthday.  There were Valentine's to assemble.  We needed a table.  Life had to continue so we had to hit the ground running.

And this is the rundown of our happily functioning life:

When kids are home from school they help hold Philo so I can get some things done around the house and make dinner.

We went light for Mimi's birthday this year by just having a late-over in jammies and she was just as pleased.  She had a bunch of girlfriends over to eat cake, dance to Katy Perry in the kitchen and sing karaoke.  Then they all went downstairs and watched a movie.

Mimi is so blessed to have so many girl friends and I am so blessed to love all their mothers. This is one of my favorite parts about Utah: all the people doing the same thing in the same phase of life.

Hush does a LOT of baby duty.  He maintains the babies while I get the big kids in their beds at night. I have never felt more like a team with my coparent than I do these weeks. I strongly believe that the dad becomes a full time parent when the second baby comes.

Mercifully, LouLou is a great and flexible sleeper. Although she is a light sleeper, I can get her to nap when it's convenient for me and Philo.  She's on one or two naps a day at 17 months.

Occasionally the sink is sufficiently clear of dishes so I can bathe Phi in it.

Lou is feeling the shift of her throne.  She wants to be carried as much as possible. Never has she been more satisfied than when I put the giantess in the baby bjorn. But it totally hurt my back so forget it, kid.  In the afternoons we often have help from a mother's helper, Mikayla, whose main job is to hold and chase LouLou. I use that time to nurse without getting jumped on and to clean up the tornado she's caused around the house. Toddlers are so messy!

Snuggly babies in footie jammies. They're 16 months apart.

MJS built a Rubes Goldberg machine this week and Hush and I about died of pride.  They hadn't even been introduced to them yet but they figured out how to make a chain reaction.  Very proud.

Bath gazing.  Only one person pooped in the bath this week. Not bad.

Last Saturday the kids were playing happily with some friends downstairs so I took the opportunity to run an errand.  When I came back there were a total of 9 children in the house.

I don't take enough pictures of my cutest human.  Lou is a charming little monster.

Jude and his buddy Jack decided that they're twins because they both have two front teeth missing and similar haircuts. 

Most of my photos on my phone look like this. I think I've taken a picture of Philo every day of his life.

Philo is an okay sleeper. It takes him a while to get into a deep sleep but when he does he's out for hours. He's super gassy though, so that's been a challenge.  At five weeks he is waking up only once a night to nurse, and that feeding is happening around six am. So I guess technically he slept through the night last night for the first time.  Best newborn yet!