Dash had a good day.

We didn’t get a lot of sleep last night, as we still have to feed him every 3 hours. I took midnight and 6am and Katie took 3am. He needed a diaper change at the 6am, which caused him to cry, which caused Olive to want to get up.

He’s still getting acclimated to things around the house, and he cried a lot less than yesterday. He slept in his pack n play for a few hours, and we were able to do household things for a bit.

We spent most of the day in the living room. We watched a movie, watched some professional wrestling. He either napped or just hung out most of the day.

We’re getting the hang of the equipment. The pulse oxygenator makes two noises. One for when his oxygen saturation or heart rate is too low and another when it can’t detect a signal, which happens when he kicks. The two alarms sounds too similar. The oxygen concentrator is hard to tune out for me. It’s the same sound of an air compressor I have in my garage, though quieter. It makes it much harder to understand what people are saying so I have to ask Katie and my Mom to repeat themselves way too often.

We gave him a bath at night, and we put his baby tub in our full-sized tub, which meant we needed to be on our knees to scrub him down. I think we’ll need to find a better way.

We had a good day.

I mean, it was stressful and hectic, but he’s home.

Since we’ve been up in Chicago, every weekend Katie and I have been going to Do-Rite Donuts. We’ll get a donut each and go eat it in the hospital cafe before we visit Dash. Since this was our last day in Chicago for a bit, we started the day by getting some of our favorites and had a relaxing moment before going up to see him.

They planned on releasing him after his first feeding, but he got delayed an hour or so. There was a lot of people stopping by, and we had to sign forms and waivers. Almost all the nurses and doctors working surprised us by singing him a song while he was sitting in bed. The music therapist was playing a guitar. I made 3 trips down to car to load more of his stuff, while at the same time dealt with random requests from friends and family who wanted to make his discharge public a few hours before we were going to.

We hooked up his travel equipment, put him in the stroller and headed down. Lurie’s has a large tropical fish tank in the lobby and we posed by it and Dash looked at the fishes. He was calm, but wide eyed. We carted him to the parking garage and got him loaded in the car. I made a car horn noise and squeezed his cheeks and he made the biggest smile. Then we drove home. He was asleep before we’d gotten on the interstate. He woke up and hour in and was interactive and not upset.

When we got home, we brought him to our back porch in his car seat to meet Olive, but he was very asleep. So we brought him inside and took him off his oxygen tank and hooked him up to his oxygen concentrator. And there was fumbling around as we tried to figure things out, but eventually things were ok.

Olive did meet him and she likes to give him kisses. He’s just has a confused look on his face, but doesn’t cry.

Until dinner we were trading off who was holding him. We ordered pizza from a local favorite and we took turns holding him while we ate. He mostly spent the first few hours crying, and then warmed up a bit.

Then we changed his outfit and put him to bed. He really seems to like his room and crib.

Things are overwhelming. In a negative and positive light. Keeping tabs on his machinery and learning their quirks is intense. It’s not as high grade as the hospital stuff, so there’s a lot of false alarms. The logistics of moving him from room to room feels a bit like a puzzle. His concentrator is loud. Not as loud as the AC Unit at the Chicago apartment, but enough to annoy me and makes trying to fall asleep difficult.

But, he’s home. And he seems to like it here, and we’re happy to not be in the hospital. It feels like the NICU chapter is done and we’re starting the next one.

Dash had a good day.

He had a lot of visitors stopping by to say bye and wish him luck. Discharge is set for tomorrow mid morning.

He had a swallow study done where they fed him pigmented food and watched it on an X-ray. He seems to not have any physical issues with food going down his windpipe, though keeps food longer in his mouth than a typical kid. Probably because he’s just now using his mouth to swallow things.

I drove home this morning and met with the medical supplies and equipment person who walked me through how the oxygen concentrator and tanks worked. I stuck around for a bit and then headed back to Chicago.

We fed him carrots, which he still loves, and then gave him a bath. I held him for a little while and then we took a kid of his stuff down to the car.

5 or 6 years ago we swore off McDonalds as a New Years resolution and it stuck. The next year we stopped drinking soda and it stuck too. A few months ago we told ourselves that we the night before discharge we were going to go to McDonalds as a sort of reward. So we did, and it was great. I’ve got a sodium/sugar buzz going at the moment. It was a little weird noticing the Ronald McDonald House logo when I was ordering, since we owe so much to them in exchange for nothing. We wouldn’t have been able to be with him as often as we are without them.

Dash had a good day.

Things are still on track for a discharge on Friday. Things were being held up by his health insurance, who were delaying an approval on his home equipment, but that came through late in the day. I would say some of the anxiety is dissipating and it’s becoming more exciting.

He’s getting 2 deliveries of equipment. One to the hospital that came at 9pm tonight, and another one at our house tomorrow morning. So, I’m getting up in the morning and driving home to be there for it. Then, I’ll drive back to the city to give Dash his last hospital bath and spend the evening with him.

Katie put together a gift basket for our primary nurse with a special gift and made a snack basket for all the nurses on the floor.

Dash had a good day.

Last night after bath time, Katie drove home and took care of some random things to get his room ready. She went through the shower gifts and cleaned out his closet. She also cut some vinyl on her Cricut for a discharge day outfit for Dash. She was up practically all night and drove back early enough this morning to be here when he woke up. She relayed some of the same feelings I had the few times I’ve been back home like how it’s an overwhelming mess with all the random unopened boxes, apartment furniture partially replacing old stuff, etc. It’s just a weird quasi-home at the moment.

The doctors don’t want to change anything now that discharge is in the works. He seems comfortable at his 1:10/1:50 on/off feeds for now, and we can continue to transition him to more normal length feeds once we go home.

We’re giving him a bottle 3 times a day. They’re very small amounts (just 10ml bottles) and sometimes he takes 5ml, other times he just won’t have it. The therapists say it’s not uncommon for kids like Dash to not take bottles.

He had a hearing exam today (which he did ok with) and the headphones wouldn’t fit, so they put some bean bags between the headphones and his head.

We gave him pureéd pears tonight, and he did not like them at all. He’d frown and move his head. We switched to apples and he likes those better, but the pears kind of ruined the session.

The staff is still telling us to prepare for a Friday discharge. He’s still got to pass a few tests, but people are reassuring us that he will. Some of the staff are ending conversations with “well if I don’t see you before you leave, then best of luck!”, which is surreal. We got a list of upcoming post-discharge appointments and he won’t be due back in Chicago until the beginning of September.

Dash had a good day.

There were no changes with his settings. It seems everyone is on board with discharge as plans are moving forward. The hospital is trying to touch base with our pediatrician and drugs are getting approved by our health insurance. Home equipment has been ordered and we’ll be trained on it in a few days. There’s not and official “the doctor has cleared you for the discharge” moment.

He’s got a few appointments this week including a hearing exam and a swallow study. I don’t expect them to reveal anything new as he seems to do both ok.

He had a typical day of sleeping, playing and cuddling. He got to try puréed banana tonight, which he didn’t react much too. He ate a few spoonfuls and didn’t spit it out.

Katie went home after bath time tonight and is prepping a handful of things. The plan is for her to drive back early enough to be here at the normal time.

Dash had a good day.

It was pretty relaxed and he didn’t have any changes. When we got to his room his nurse was holding him because he was being a little fussy. After she put him back he gave me a few big smiles. A little later, he sat in his chair for a while and he played with a Mylar balloon.

I took a break today and tried to take a nap. I’ve had a pain in my back the last few days, which was probably from all the handyman stuff around the house. I wouldn’t be surprised if it was a manifestation of anxiety as well. A lot is happening at once.

We put him in his car seat and adjusted the straps. It was a little weird seeing him in the car seat.

In the evening I went back to the hospital and Dash ate some puréed apples. He’s starting to actually take the spoon into his mouth, taking the Apple and swallowing it. We don’t make a dent in the package and throw out at least 95% of the food, but he seems to enjoy it.

While I was holding him, he did take a bottle. He drank 6 of the 10mls in the bottle.

Dash had an ok day.

I started the day at home today, and tried to knock off everything from my todo list. Putting together a glider, installing the car seat, putting together the stroller, etc. We had a guy come and detail the car and remove dog hair from the seats. And at the same time, we had a some family members dropping off a barely used washer and dryer. It was a hectic morning, and nothing was as easy as it should have been. I made several trips to the hardware store.

Then around 2 I hit the road and traveled back to Chicago. Dash’s sleep schedule was off and all he really wanted to do was sleep. And since we wouldn’t let him sleep, he was crying.

At his weigh-in, he lost 25 grams. 25 grams about a quarter the weight of a full diaper, so a fluctuation like that is expected. As long as his weight gains over a week average out to 15 grams a day, he should be cleared for discharge next week.

Dash had a good day, as far as I can tell.

He slept through the night, but has been getting up early, and he was still breathing a little heavy. He got pumped from .5 to .75 liters of oxygen, more on Katie’s request than anything else.

He also had his first ever bottle feeding today. Just 10ml, but he got the hang of it and seemed to love it. We’re allowed to give him a bottle 3 times a day as he gets used to it.

I worked from the office today. I tried to remained focused. Only the people who need to know know that a release could be imminent. So I tried to not let on as much. A few of us did go down to an outdoor restaurant for lunch. I came home early from work and replaced all the outlets in Dash’s room and then my mom and I put smoke alarms in a few places that didn’t have them before. We listed our old washer and dryer on Craigslist and a guy came and got them at one point.

Tomorrow I’m having the car detailed to remove any dog hair from the car. And then we’re having a new (to us) washer and dryer dropped off. Then I’ll head back up to Chicago.

Dash had a pretty good day.

They turned down his oxygen from 1 liter of pressure to 0.5 liters of pressure. He could go home on either, but apparently .5 is easier for parent to manage. He was breathing noticeably heavier though, so we’ll see. The APN checked him out in the evening and they said they weren’t too concerned, since he wasn’t breathing faster. They also sped up his feeds to be over 80 minutes instead of 90.

Last night he took a bit longer to get to sleep compared to last nights and we were around for night rounds. I figured they were at like 11, but they happens at 9. The doctor gave us the full run through of what to expect for discharge. Once Dash is steady at these numbers for a few days and is still gaining weight and participating in therapies, the doctor will recommend him for discharge. Which means a bunch of other people have to sign off on it, along with other logistics such as medications, follow up appointments and pass off to a pediatrician. He said that process can take 1-2 weeks with a kid who’s been in the NICU for as long as he has. It makes sense after he walked us through it. If things are looking good come Monday, he’d put in his recommendation. And if the stars align, he could be out by the end of the week.

I’m still feeling optimistic, but guarded. At this point I know he’s coming home and we’re at the tail end of this leg of the journey. I’m just trying hard not to have thoughts like “he will be home by X day of the week”. Because something might come up. Something could be delayed a few days, or a doctor might disagree.

I visited early today and we did his bath and fed him sweet potatoes and snuggled for a bit. Then I came back to Champaign afterwards. I’ve got a bunch of things to do around the house before he comes home. And I also need to install the car seat and bring it back with me so they can test Dash in it. It’s one of the items on his checklist.