Saturday, June 15, 2013

A typical (or atypical) day

So, this was our day from Friday, June 14th, as best as I can remember it... today will be totally different, but the same.

Throughout the night (Thursday), Watts is woken up by our nurses administering meds and taking vitals, and so are we, of course. I'm sleeping on the couch and Michael is on a twin blow-up mattress on the floor. We take turns crawling into Watts' crib to comfort him and twice we change his diaper (trying to avoid the dreaded "chemo diaper rash"). We wake up around 6am after a very broken night of sleep, Watts snoozes till 6:30am. I pump.

Nurses are in and out, taking vitals, drawing blood for labs, and administering meds. Our awesome med student, Chris, and resident, Anna, pop in and check on our night.

Lauren brings us amazing coffee. I thank Jesus for coffee.

The PT/OT comes by and evaluates Watts.

I pump.

Gigi (my mom) brings Piper up for a visit. Piper hangs out for awhile in the room before Michael takes her to an art class down the hall with Lauren. They make a hilarious jumping frog craft.

The nutritionist comes and meets with me in regards to Watts' caloric needs. We make a plan to last us through the weekend.

Watts throws up on Michael and in the course of an hour has multiple diarrhea diapers. They run tests on the stool [which later, thankfully, comes back as negative for some infection kids get when they're on a lot of antibiotics].

Gigi takes Piper on an outing.

I pump.

Dr Russell rounds with resident and students. We talk for awhile about Watts' progress. Dr Russell seems encouraged and so are we.

Nurse is in and out administering meds, starting feeds, etc.

I go back to the Ronald McDonald House at lunchtime and meet up with Piper and Gigi. I spend some time with them, then head back to hospital while Piper naps.

Watts is laughing and playing when I get back and has taken a few sips out of a sippy cup!

I pump.

Michael gets Watts to nap, he then does some work and I try to come up with a plan/routine for Piper for the next week after Gigi leaves.

We say goodbye to Chris, our medical student, who is heading off to Nicaragua. He's been with us since the beginning (was even in the room when we first learned Watts' diagnosis) so its very sad to see him go.

I pump.

More diarrhea diapers.

Gigi texts that Piper is up from nap and is spending time with Gramma and Granddad (Michael's parents).

Nurse is in and out administering meds, checking vitals, starting feed, etc.

Dr Russell pops in to talk to us and check in on Watts.

I pump.

Speech pathologist comes by to talk about Watts' swallowing.

Gramma and Granddad, Abigail and JC, and Piper all bring dinner to the lobby. Michael and I tag-team going out to eat and spend time with them. 

Nurse is in and out administering meds, checking vitals, starting feed, etc.

The extended family leaves and the four of us (Watts, Piper, Michael, and me) spend time in the room till 8pm.

I pump.

Brandon Dent's sister (who works on the 8th floor) stops by to check on us. So thoughtful!

Michael takes Piper back to the RM house for bath and bedtime and he spends the night too (only the second time that he has not slept in the hospital since all of this began).

Nurse is in and out administering meds, checking vitals, starting feed, etc.

Watts and I hang out until 10pm when I start to see signs that he is tired. I lay with him in his crib until he falls asleep.

I pump.

I fall into "bed" and go to sleep... before the midnight meds have to be administered and everything starts over again.

*Up until last night, Michael and I have both been sleeping in the hospital. Now that Watts is through the worst of his fentanyl withdrawal, we are going to tag-team nights. Oh, and Michael was a rock star and slept all but 1 night in the ICU while Watts was sedated...with the lights on and people rushing in and out the whole night. 


  1. What a fiery trial you are going through! Somehow, as repetitive and physically torturous and emotionally excruciating your journal describes it to be, I am seeing GOLD here. I hope you are, too, seeing it all as a gift in your soul from the giver of all good and perfect gifts. I am in awe watching your story play out. I love and pray for you often.

  2. Above comment is from Aunt Toni, not Will. (He forgot to sign out on my computer).

  3. This is exhausting to read and think about so I cannot imagine hoe hard it is to live. We have had a couple of hospital weeks with babies but nothing like this. Bless you! We are continuing to lift all of you up to our Heavenly Father.

  4. All that pumping brings back terrible memories for me. Praying for you guys - with the knowledge that only through God's grace and strength you will get through this and Watts will be the great reward. That precious boy is God's gift to you - maybe wrapped in a difficult package right now, but someday you'll look in those eyes and know you'd do it all over again just to be able to look into those eyes. Love you guys - you are "good and faithful servants" taking care of God's child. Praying hard for you all! ~ Aunt Jenny


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