Baby Blog

My blog reflects my camera roll and these days my days are filled with little people.  There's a saying that goes "If you want to know what somebody fears losing watch what they photograph." You know me: I fear losing my children's littleness. So here's the documentation.

This is the nursery.  I love having tandem cribs.  Philo doesn't sleep in here much yet because I haven't really sleep trained him yet.  He is 10 weeks yesterday but his adjusted age is 7 weeks. He has been sleeping 6 hours a night off and on since about 3 weeks, which is a small miracle. But I am also breaking all the rules: I nurse him to sleep then put him in his bed.  When he wakes up in the wee hours I nurse him while I sleep and then I wake up at about 7:30 with my snuggle baby cuddled up to me.  It's bliss.

This is Philo demonstrating how I will feel when real sleep training begins in a few weeks.  Healthy Sleep Habits, Happy Child is my baby sleep manual.  I have an amazing sleep coach in Cathryn Gus. She's rigid but sympathetic.  I know how to sleep train but it feels much better to have someone encouraging you when it feels like all is lost.  If you need baby sleep help, she's a guru and I'll hook you up. She should charge!

Baby Lou is in the throes of toddlerhood. My kids hit the "terrible two's" at 16/18 months and it doesn't last far into their actual two's.  Lou has it bad because she doesn't speak yet.  She's slightly speech delayed but she certainly isn't a mute.  The only words she has at this point are Dad and Mama, Mimi (her first word and well earned by Mimi -- MehMeh as she calls her) baba and hi. I think she added Juju today.  Anyway, not speaking is frustrating for her so she compensates with a lot of high pitched shrieking and tantrums punctuated with a maniacal laugh. 80% of the time she's delightful, the other 20% she's a little beastie. All to be expected.  The family rule is "don't touch her, give her whatever she wants".  She's the boss of us.

My life right now is holding, nursing, smiling at this baby with a side of jobs.  I'm getting to the end of my childbearing and for the first time I'm cuddling a baby wondering if it is my last.  If he's my last baby I need to make sure to really soak up every minute.  It's weird not knowing for sure.  I may be at my kid limit, but I won't know for sure for at least another year.  I'm trying to fill my newborn tiny baby bucket just in case.

Oh! This is my other new hobby: car shopping. And by car I mean school bus. We currently have a 7 seater SUV which fits all of us but not all of our stuff. Plus, two kids have to jump over the seat every single time and it's hard to access the middle car seat.  I used to have a minivan but I anticipate always having to keep the eigth seat in and still having issues with the car seats and access to the back.  So I'm finally looking at my dream cars: giant vans.  I'm talking Econoline field trip sized vans.  Airport shuttle style vans.  I love the idea of being able to load everybody I feel like into my giant pimpin' van.  We've driven the Nissan NV, the Chevy big fat van, the Mercedes Sprinter and the Ford transit.  Leaning heavily toward the transit, but I want it in black!!

St Patrick's Day is an excellent easy holiday. Very little required for a good time. Small investment, large return. Easy costuming and corporeal punishment for nonparticipation. The leprechauns set fire to their traps to escape and tattooed mustaches on the children. 

Just one of the dozens of Philo pictures on my phone. Gray brings out the blue in his eyes.

Lou's first mustache.  The candy the leprechauns left was a chocolate disaster all day long. There are smears all over my linens in every room.

Cubby (7) with HIS baby.  He's a good diaper changer. 

Baby snugglers.  This picture makes me nervous and the posted lasted less than five seconds before Miss Wiggles wormed away.

The Bernie rally!! My children are totally interested in the presidential election. I described it to them with a baseball analogy: red teams versus blue teams are currently in the playoffs. We're blue team of course. It's fascinating to hear what trickles down to them through school.  They are horrified by Trump and think he's Darth Vader level evil. Sometimes they come home with weird Hillary impressions and I have to set them straight. If not Bernie then Hillary will be an excellent president.

The lines for the Bernie rally were miles long so we crossed the street and went to the Hogle Zoo where we could hear Bernie while we looked at the animals.  This was a parenting success day. Politics and animals with all five kids.

In case you wanted to see an elephant nursing. Pretty cool. I didn't realize it would have to get down on all fours. That's a lot of effort for a little milk.

Dressing BL is one of the highlights of my day.  I only do her hair once a day though and she rips it out.  Here she is crying because I left her hood up. Don't care, looks like a little gnome.

Baby I love love love you!

Fashion. Lou in our family colors.  Is it normal to have family colors? Pink, black, white and gray just work for us.  

For spring break Mimi is in California at Grandma Pam's play! It's her debut. I'm dying because I don't get to see her in it. If you see her please document and send to me!  She got to fly as an Unaccompanied Minor.  (It's a giant racket. They charge you $50 extra both ways but you still have to walk them to and from the gate. For $50 they should escort them from the curb and carry their luggage. But no. I had to take five kids through security unexpectedly. Was so annoyed.)

The lost Cr@ven brother. We love william over here. Silas in a bunny suit because it's Spring break so why not? I am on the lookout for more bunny suits for the rest of the children.  I like them more in costumes.

My sister wife Lacy with her buddy Philo. Betty Lou calls her mom too. Lacy is a force who deserves her own lengthy description. Love her dearly.

Mr. Smiles

Jude on baby duty.  He's a good snuggler and once a day bottle feeder. We all have baby Philo fever.

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.