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!

Little Brother's Little Brother

As second boy and the youngest of the triumvirate I worry that Silas (6) gets lumped in with the other kids and that I don't help him develop his own interests and talents.  He's so easy going as far as activities: whatever Mimi and Jude feel like doing he likes it too.  He's a lot like Mimi in that he is happiest when he's playing with other kids, so he doesn't have a lot of solo activities nor hobbies yet.  In the last few months, however, we've tapped into Silas' true nature.  He's a lover.

Silas is in love with baby Philo.  He is perfectly content to snuggle Phi all day.  

I often catch Silas laying all his love on the babe wherever he happens to be.  No accidents have happened yet because Si is very conscious of how fragile 5 week Philo is.

Amusingly, Silas sees LouLou as competition and a bit of a rival because she's so bossy.  The other kids give BL a wide berth but Silas meets her head on to establish dominance.  But Philo is an object to be lavished with adoration.

My favorite thing about Silas is that he is in complete bliss when he's asked to be lazy and just sit and hold.  The other day we were shopping for tables at crate and barrel (they had nothing we wanted) and I set him down on Philo duty.  Silas smiled a beatific smile at all passersby. 

It's good for the little brother to have a little brother.  I love Silas for his nurturing personality.

Punxsutawney Phi

My sister Celia used to have a blog: Groundhog Day with Celia Fae.  Like the Bill Murray movie, parenting can get redundant.  The premise of her blog at genesis was that she felt like as a parent and stay at home mother she lived the same day again and again.  The blog was an effort to find the extraordinary or remarkable in the repetitive and she was undeniably successful, she's a far better writer than I.  But, like many blogs started in the blog heyday, she tapered off and then ended more officially when her husband became the ecclesiastical leader of her congregation.

But this idea of parenting Groundhog Day has lingered for me.

Groundhog Day this year has struck a rather different chord with me because as Punxsutawney Phil was making his prognostication I noticed that my tiny baby newborn, now three and a half weeks, is making the switch from newborn to nearly one month old baby. He's still very tiny of course but there is a big difference between a newborn and a baby/infant. Usually the transition passes unnoticed but it seemed to have happened overnight with Philo and I'm experienced enough to objectively observe it rather than being caught unaware after it's happened.

And it just kills me.

Already I miss the newborn from a week ago. He's still in newborn diapers and tiny clothes but he's grown out of one outfit already and I miss him in it!

This is a microcosm of my very least favorite part of parenting: the growing up part.

And so I wish for Groundhog Day: the same day over and over again.  I want time to stop and my babies to stay little.

I think it's a rather cruel trick of God to give us these precious newborns and then take them away forever.  And I feel that way about every age of my children.  I miss toddler Silas.  I miss four year old Mimi and four month old Mimi.  I can't even remember newborn Jude (other than his unwanted haircut) but I want him and I want three year old Jude.  I want them back. I want to have all of them at all of their ages.

I do my best to savor every age: it goes so fast, it goes too fast.  Sleep deprivation makes me forget huge chunks and sometimes I find myself nearly weeping that my kids have gotten so big.  I know it means that I'm doing my job correctly keeping them alive and learning, but I just want all of my babies back.

The coffers have been replenished a number of times and I do get to relive their stages, but it's not the same.  Lou the tyrant is very similar to Mimi the toddler tyrant but I can't touch Mimi's perfect curls.  I have only pictures and memories, and my sleep deprived memory is so fuzzy.

I have my blog and our history but I don't have their little smells and their little hands.

The big kids are still a little unit but they don't need me as much any more. I've asked each of the children to stop growing. I push on their heads to keep them short. Nothing works.

I can appreciate this stage, of course.  They're so helpful now and I love showing them what it was like when they were babies: all hands on deck, constant needs to be met, no sleep til Brooklyn.

I appreciate that they get to see full arms and that they can now help.  They get to raise babies with me, the same way they were raised and teaching them the same lesson of selflessness that having babies requires.

Thankfully, this baby is easy. He's my easiest baby by a long shot, mostly because I finally got nursing down. It took me five kids to figure out how to get my body to cooperate but Philo has helped me master breastfeeding.

I appreciate the children's current phases: Mimi the tempestuous little mama, Jude the innocent bully big brother, Silas the emotional space cadet, Lou the sweet toddling destroyer who is learning to make us laugh intentionally.

(PS, I made this chandelier. Unrelated to this post I just needed to brag).

To combat the days that march steadily onward deeper into their childhoods I document with pictures and videos.  The pictures go here, the 10 second videos I take with my iPhone I've been posting to a private YouTube channel for the past few years so I have them all in one place and watchable at any time.

As the old saying goes, "The days are long but the years are short."  The children's stages are fleeting. But I still have some hope.

In my version of Heaven I get my babies back in all of their stages AND I get to keep having them indefinitely. I can't think of anything more heavenly. My babies for infinity.

Stay little, stay little, stay little.