{NICU: Day 39}

I’m not sure if I should even call this NICU day 39, since we’re not technically in the NICU anymore. I stayed here at the hospital with Joey in my room hooked to nothing last night. It was awesome!

We are just waiting on discharge paperwork, and then we’re bustin outta here!!

Joey is 5lb 14oz and 19.25 inches – 2 pounds and 2 inches bigger than when he was born!

The staff here have been amazing. I can’t say enough about the nurses who have taken extra time to get to know us and our story, to love on our boy, and help us through this transition. The doctors and nurse practitioners have taken such great care of him and have set us up with a great plan for his future care. And they recognize the love we have for this special boy and have told us what wonderful parents we already are. This has not been an easy journey, but its been worth it. Every drive, every day, every dollar… This moment almost 6 weeks in the making is so worth it.

We didn’t know if this baby would be a boy or a girl. But ya know what I know now? Boys are pretty awesome. 🙂

MRI

Joey got his MRI earlier today. His nurse said he did great – he was wide-eyed and checking everything out when they went down there, but he laid still until the very end when they had to give him a little sugar water.

The doctor got the results a little while later and went over them with me. They found a bunch of tiny bleeds in two parts of his brain – some in the cerebellum, and I can’t remember where the others were. They can’t really say what all of this means for him, but we are working with a social worker to get him enrolled in Missouri’s First Steps program which is an early intervention program for developmental delays. A therapist will come out to our house periodically to assess and work with Joey on any areas of developmental concern.

He will also go see a specialist to analyze his development at 3 months old and be watched by them as he grows to make sure we get him any interventions he needs as soon as we can.

They were hoping to have us “room out” (stay at the hospital with him) tonight, but he is struggling through the transition to the bottles he’ll use at home, so were going to try some different ones and hope we can stay soon.

He passed his car seat and hearing tests! They decided to skip the eye exam, and instead scheduled us an eye appointment for him on Thursday.

We are getting close!

{NICU: Day 35}

You guys. We are so close.

Joey has been taking all his feeds by mouth since yesterday morning, so they removed his feeding tube for good this afternoon! He has to be taking all feeds by mouth for 48 hours to go home.

It’s so fun to be able to see his whole face. 🙂

Tomorrow he will have an MRI. It takes about 60-90 minutes. They look at his entire brain tiny piece by tiny piece. They opted out of his third head ultrasound because they were going to do the MRI anyways, and it is so much more accurate and allows them to see everything. He will go down just after he eats so he is sleeping soundly. He will not be sedated at all, hopefully just having a good nap! A nurse will go with him and comfort him with a pacifier if necessary, or a little bit of sugar water if he’s really struggling to calm down. I’m not sure when we’ll know the results of the scan.

He will also have an eye exam and his hearing screen tomorrow.

They also asked me to bring in his car seat to test to make sure he can safely go in it. He will sit in it for 90 minutes and needs to keep his heart rate at a normal level as well as keep his oxygen saturation above 90.

His doctor this week came to talk to me this afternoon and asked if I’ve got a pediatrician – she said she definitely needs to know by the end of the week so she can call them and get them all of his info. Eek! That’s less than 2 days away!! I did pick one for him this afternoon.

He was up to 5lb 14oz last night – grow, Joey, grow!

{NICU: Day 30}

No more cannula, folks!

They switched Joey a couple days ago from .5 liter flow of 21-24% oxygen to a .2 liter flow of 100% oxygen. If they send kids home on oxygen, they’re not able to mix it so its 100%, just a low flow. They wanted to see how he responded to that. His stats were much better with these settings, and he was doing so well that he was only on that for a day before they switched him yesterday to .1 liter flow of 100% oxygen. One of his stickers that holds the cannula in place was not sticking anymore yesterday, so it kept falling out and he spent most of the day chewing on it. His stats stayed great though, so today he’s off completely!

He is up to 5lb 9.9oz and 19 3/4 inches long. He’s getting big!

He is starting to get the hang of bottle feeding. If he’s awake he does great with it! He has been taking about 2 bottles per shift, so 4 per day. As he matures he’s awake more often and building more stamina, so he should continue to eat more and more! He’s had a slowish day with eating today, but his nurse said its to be expected because even though he was on such a low flow with his cannula, his body is still working a little harder today to keep his oxygen level up. He is still only 35 weeks gestation, and his nurses say he’s doing exceptionally well for his age. So we just wait for him to get bigger and stronger!

Statistically speaking, white males tend to be the weakest in the NICU. He’s in a room full of black girls right now (which tend to be the strongest!), and its hard to watch them all getting ready to go home, but we know he’s in the best place he can be and want him to be here til he’s ready. He needs to get over his “wimpy white boy” syndrome soon, though! Haha!

Just another fun picture of him from yesterday, because I know you’ve all been deprived for a couple days as we’ve been busy, busy, busy! 🙂

{NICU: Day 23}

This boy is FIVE POUNDS today!

{NICU: Day 22}

Somebody is 3 weeks old today!

He is up to 4lb 14.9oz. Taking 40ml feeds every 3 hours. His spitting up is getting better, but he’s having some reflux which is causing his oxygen saturation to drop near the end of his feeding, so he’s had to be on extra oxygen. Room air is 21% oxygen, and he’s been ranging from 25-40%. Just needs to grow bigger and stronger so his full tummy doesn’t put pressure on his lungs that makes it hard to take a deep breath. He started breastfeeding a couple days ago and still really doesn’t get it and needs to learn how to suck, swallow, and breathe at the same time, but we’ll keep working at it. I tried to give him his first bottle this afternoon, but he has been so sleepy all day and really wasn’t interested at all. So we’ll keep trying!

A Day in the Life

In case you were wondering just what a day in the life of a couple of NICU parents who live 30 minutes from their baby looks like – here’s a little snapshot.

Sam:
8am – set up pump, pump, clean pump parts
9am – shower and get ready, get bag ready to go
10am – set up pump, pump, clean pump parts
10:40am – make and eat breakfast
10:50am – drive to hospital
11:20am – arrive at hospital, scrub in, say hi to Joey, change his diaper and take his temperature
11:30am – nurse starts his feed through his tube and I attempt to nurse until he falls asleep, then I snuggle and stare at him
1:00pm – put Joey back in bed, go pump
1:40pm – go eat lunch in the cafeteria or car
2:15pm – back with Joey, change his diaper and take his temperature
2:30pm – snuggle him while he gets his feed
4:00pm – put Joey back in bed, go pump
4:45pm – drive home, get stuck in traffic
5:30pm – get home, get the mail and pay the bills, sanitize pump parts, pack bag for the evening, organize and freeze bottles
6pm – eat dinner
6:30pm – set up pump, pump, clean pump parts
7:15pm – leave for hospital
7:45pm – arrive, scrub in, Andy snuggles Joey
8:20pm – change Joey’s diaper, take his temperature, weigh him
8:30pm – nurse starts his feed, skin to skin try to nurse again until he falls asleep, then snuggles
9:30pm – change his clothes, wrap him back up, go pump
10:15pm – head home
11pm – get home, pack lunch for tomorrow, pack bag for tomorrow, get stuff ready for middle of the night pumps
12am – set up pump, pump, clean pump parts
1am – try to get some sleep
4am – set up pump, pump, clean pump parts
5am – try to get some sleep

…..and repeat.

Andy:
8am – leave for work
Work a long day!
6:15pm – arrive home to Sam just finishing eating, eat dinner, do dishes
7:15pm – drive to the hospital
7:45pm – scrub in, snuggle Joey
8:30pm – work on some work while Sam feeds Joey
9:30pm – snuggle Joey some more
10:15pm – drive home
11pm – arrive home, pack lunch, pack stuff for work tomorrow
12am – try to get some sleep
4am – wake Sam up because her alarms been going off forever
7am – get up and get ready

…..and repeat.

Catching up on our favorite tv shows? Ha! Running errands, grocery shopping, cooking, cleaning? Not happening. Thank you cards? They’re coming, folks… Someday.

And tonight were adding the puppies back in to the mix. They’re in for a rude awakening of what life is like these days. They’re going to be wishing for their baby brother to come home ASAP too 🙂

{NICU: Day 18}

Today Josiah moved to his big boy bed!! So far he is doing great at maintaining his temperature. It is so awesome to have him in a crib because we can just scoop him up anytime we want! His new nurses in his new room keep commenting on how chill, calm, and content he is. Yup. 🙂

He got weighed on the big boy scale tonight for the first time too! He used to get weighed in the isolette. He’s up to 4lb 9.3oz!

He is also 18 inches long now… When he does what we call the “4-legged stretch” he really sticks out the end of his clothes! Lol!

He so loves just chillin’ with his daddy. ❤

{NICU: Day 17}

I haven’t had many specific Joey updates lately, so I thought I’d fill you all in. He’s just been growing, learning, and getting better each day!

He is now up to 4lb 6oz (as of last night) – he hit 4lb 4oz on 4/4 which I thought was cool! 🙂 We bought him a bunch of preemie clothes last night and I don’t think he’ll wear them long.

His feeds are continuing to increase because he’s getting bigger – he’s up to 37ml every 3 hours now. He is still spitting up a bit, but doing better as his stomach continues to grow.

He wears clothes now and is wrapped in a blanket to help him practice for when he moves out of the isolette and into a crib. Room temperature in there is 27 degrees celsius – late last night they turned his isolette down to 29 degrees and thought they’d drop it .5 degrees every 12 hours, but he was tolerating it so well that this afternoon he was already down to 28 degrees! Once he gets down to 27, they will keep him in there for 12-24 hours to make sure he’s continuing to maintain his heat, but then he’ll move to a crib!!

He also learned to suck his thumb today!

His nurse today commented on how “exceptionally well” he’s doing and how he’s “ahead of the game”. So fun to see him progressing and tolerating the changes so well! Go buddy, go!

He will be 34 weeks tomorrow, and that’s when they start thinking about introducing the bottle. He needs to learn how to suck, swallow, and breathe all at the same time… So it will be a learning process for him! Can’t wait to be able to feed him like that and not through a tube 🙂

Here’s a couple more pictures from today:

A full body shot with a cute onesie on!

He is still just such a happy and content boy 🙂

Strength

To all of you who’ve made mention through this journey about how “strong” I am, I want to let you in on a little secret: I’m not.

Today I’m feeling not strong at all. In fact I’m sitting in the pumping room at the hospital as I write this crying big tears that just won’t stop.

It is hard to have rules about when and how you can see, touch, hold your own baby. It is hard to have rules about who can see and touch your baby. It is hard to see his head getting so flat on one side (preemie “toaster head”) because all he does all day is lay on his belly with his head to the side (his stats drop everytime he’s on his back). It is hard to see him laying in a pile of spit up because its not his turn to have his bedding changed yet. It is hard to long so bad to have your baby in your arms only to arrive a minute after his feeding has been started so you won’t be able to hold him until 6 hours later. It is hard to stand and stare at him through an isolette for hours on end.

This is all really hard.

I know it is Him who gives me strength, and that’s the strength you always see – His strength through me. But today I’m feeling empty, broken, drained, and exhausted… So I’ll continue to seek that strength with all I have left because I’m in desperate need.

{I don’t mean to sound like such a downer. I am so grateful for the progress Josiah has made, and to be here healthy and alive. But this journey is not all roses, and I had to get real for a minute. Please join me in praying for some extra strength that only He can give. Love you all! Thanks for walking this journey with us – even the yucky days like today.}