Silas: 5 Months Old II An Update + Missing our NICU Family

5 Months Old
6 Weeks Adjusted
9 lbs 2 oz.
Cute as can be. 

Buddy, welcome home. We packed up all 8 lbz 7 oz of you on Tuesday, August 14th, and brought your sweet little butt home. What a whirlwind it's been. 

Before we busted out of the NICU, you had your G Tube surgery. That was definitely tougher on mama than you, you handled it like a champ, recovering super quickly. We've taken a crash course in what it takes to be in-home nurses, learning to feed you on our own via bottle, gavage, and feeding tube. You're on 4x bottles a day, nippling as much as possible (typically 40%) and gavaging the rest. Then on a continuously pumped milk drip at night over 10 hours. It's medical, it's lots of tubes and wires and cleaning, but it's our new reality. And you're home, so it's OK. The goal is for you to take your 4 bottles by nipple 100%, and then we'll start weaning you off the night pump. You're doing OK, but I can tell we're a ways off from getting to a point of no medical interventions, and that's just fine. The biggest thing we want to avoid is an oral aversion as that could have serious long-term consequences, so that's our North Star.

You love being home. Surprisingly you actually prefer to be out in the living room where all the action is. You like the noise and light, counter to your NICU experience where everything is quiet and controlled. You're cool in your nursery at night but during the day you pretty much sleep in your rock and play with music playing in the background or the TV on. You like all the input, just like your brother did when he was little. Crazy. 

We have a gazillion follow-up doctors appts every day but you've handled it with ease. It's a lot of coming and going, and exposure to germs which FREAKS your mama out so hard, but trust that I've got that hospital grade ava-gard (sanitizer) and I spray it on every passing bystander.

You smiled yesterday. Like for real smiled. OMG dude, my heart completely exploded, I cried. It was too much. Pics below.

Leaving the NICU was bittersweet. It was equal parts exciting and so, so sad. I truly didn't realize how much everyone there had become a part of our family until we got home and were left without their tender loving care and company. So I can't just pickup the phone and call to see how someone's day is going? It's weird.  

Ruby, our NICU BFF, took your assignment on our discharge day so she could see us out. She knew that was what we would want.  Ruby really only takes care of the tiny babies, so when it came to going through your discharge, let's just say she got in some good practice (but nailed it, as per usual). When we arrived that morning around 9a, she was snuggling you so hard and did not want to put you down. Through her hardass unemotional front, I could tell she was sad to see you go (but also obviously so happy for our family). Ruby was instrumental in getting us through those 128 days in the NICU. She nursed you back to health more times than I can count, when you were really, really sick. She comforted your mama in a way that very few can, at my weakest points she just got me. I didn't need a hug or a pat on the back, I craved the facts, the realities, someone to give it to me straight and then give me my space to collect myself and take it all in. While she looked over me and my messy emotional state, she meticulously cared for you. Everything was fine-tuned, every tiny detail accounted for. Your leads, your NG tube, your sensitive skin, your positioning, all of it was catered to from day 1. She had your chart memorized and was your biggest advocate in the unit, butting into issues she had no business being in but she knew what was best for you and was willing to be the bad guy if it meant you getting what you needed. Simply the best, for you, for me, for our family. She walked us out that day and I really thought I was going to be able to hold it together. We loaded up the car, your daddy hopped in the drivers seat, and there she was. Through my heavily medicated zanax haze, tears began to well up as I hugged her. She cried too. Ruby doesn't have emotions, she's a badass with a tough exterior, but I saw a few tears stream down her face that morning and I knew, we got her. It's been a long, hard road for us and we couldn't have gotten through it without her. I would not be standing here today without her. Thank you, Ruby. 

Ruby and all of the other nurses, RTs, PTs, OTs, NNPs in the NICU, took such amazing care of you and we will forever be grateful for them and supportive of their causes. Rose, who I don't think was ever actually on your assignment but offered me candy, jokes, comfort and reassurance on the tough days.  Toni, the sweetest, who could for some reason make me cry even when I didn't feel like crying because her heart is just two sizes too big and always makes you want to just cuddle up and let her snuggle you. Angie was hilarious - another 'not messing around' kind of nurse, it's no wonder she and Ruby are buds. She's one of us. Also she turned me on to an amazing Pho spot called Pho King Good. Yep. Sherry, the quiet, sweet caring one who will tell you about her grandkids in an instant and gave me my space when I needed it most, but was always just right out in the hall if I needed her. Also she dyed her curly hair pink at one point so you know I love her. Nikki, so meticulous and detail-oriented. She was on our assignment in the early days, she didn't know me but she entered the room and asked me how I like it (hah). She gave me all the details, explained all of the things, machines, procedures (my kinda gal), was so on it and I loved her. Day Melissa was always my comic relief. She laughed at my jokes and always kept it free and easy for me and for you. She kept the mood light but cared for you hard. Night Melissa came into the unit and trained with Lee in the early days. She's got wild Jeep and motorcycle stories to tell and cared for us in our final nights in the NICU.  Megan came on in the final weeks with her brightest smile, sweetest energy, caring so hard for all of her babies and mamas and families. Pulled us through the final stretch and lord were we grateful. Saying goodbye to Megan was a MESS. Barb is what we want to be when we grow up. She goes to a kids summer camp for a week at a time during the summer, off and on. The sweetest, most loving eyes and she cares for all of her babies there in the NICU so much.  Lee, the only dude nurse (God bless him). One of my favorite memories of our entire time in the NICU was with him, and I don't think he even knows it. You were 3 days old, it was 3am, I was upstairs in the maternity ward recovering and felt the draw to come see you. I asked the nurse to wheel me to the NICU one floor down, thinking I would just take a 20 minute visit and then head back to my room. Lee was taking care of you and you were his only assignment for the night (as your condition was critical). I didn't know what to say or how to act or what to ask, so Lee just sat with us, for 2 hours, TWO HOURS, explaining every single thing: what each machine was for, what was happening with your tiny 1 lb body, what to expect in the coming days, weeks, months. I cried, he nonchalantly offered tissues and kept on talking, explaining, giving me the information and education I craved but didn't know how to ask for. That night was paramount, he empowered me and reassured me that everything would be OK. Thank you, Lee. And to all of the other caregivers I haven't mentioned, there are too many to count. I see you, and we thank you and love you all so hard. Our most sincere gratitude goes out to you, we could not have made it through this without your patience, support and loving care. Thank you.

Sweet Silas, it is with all of my love that we welcome you home. It's damn good to have you here.

Ruby snuggling you up on your last day

Our very first visitor - Dee!

First at-home bath, handled like a champ

A cape, naturally

Brothers

Love for Uncle Cam

Silas Update II 119 Days II He's COMING HOME SOON!

43 Weeks Gestation

3 Weeks Adjusted. <so weird>

17 Weeks old.

8 lbs 4 oz.

3740 Grams.

Boy oh boy, if you would’ve told me in those first few week that the 2nd HARDEST weeks would be those just before we were to be discharged, I would have told you you’re crazy. We’ve been through some hellish stuff in here, NICU life is a serious roller coaster but damn, these past few weeks are really putting us through the ringer. You’re so close, dude! SO SO close. You’re basically off monitors, we have no respiratory concerns for you but dude, you gotta learn to eat! You’re taking roughly 45% of your feedings through bottle, the rest through your NG tube (nasogastric intubation). We need you to be at 100% before they’ll let you leave. So the big debate was born this past week…and you better believe mama turned to statistics, research and data to inform what we did next. I taught the nurses how to export your feeding/volume data from the archaic system they chart in over to excel, and then how to filter and make a bar chart. We looked at your daily/hourly feeds for bottle vs. gavage (NG tube), and could pretty quickly see that you’ve been doing great consistently but only at 45%, with minor improvements week over week. PS I’m a NICU nurses worst nightmare. GIVE ME ALL THE DATA! Sorry, ladies.

So, we had a few options moving forward….
1. Wait another 2-3 weeks to see if you suddenly just get it and start taking 100% of your milk via bottle.
2. Go home with an NG tube (nasal tube to supplement feeding, basically what you’re on right now)
3. Have surgery for a G tube - this is a feeding tube surgically placed into your belly, which we’d use to supplement your feedings as we are currently with your NG tube.

After much deliberation on the pros and cons of each option, we’ve landed on scenario #3. We won’t go on about the reasons why (see our pros/cons worksheet below), but this is the best option for our family. So we’re staring down the barrel of yet another surgery, but it’s OK. Your mama has learned about her PTSD triggers and I’ll be honest, ‘surgery’ is one of them, which weighed heavily on our decision whether to go through with this or not. But guess what? This isn't about me, it's about you. So in my heart of hearts, I believe this is the best decision for you, for us, and for your development and growth. Mama is gonna hunker down and have a tough day that involves surgery, leaning on zanax as a reliable assistant (and plenty of pumping and dumping for the 24 hrs that follow, stop judging me! hehe).

So that’s where we’re at.
Um, also, you want to hear more news that proves that you are a freaking MIRACLE?!? Let’s talk about your brain for a second. As a reminder, you coded at 5 days old and blew a puncture in your lung (you have such a flare for the dramatic, come on dude!), this caused you to have an IVH (intraventricular hemorrhage) grade 3 on the right ventricle, grade 2 on the left. This, as we know, is an early indicator of worst case scenario: Cerebral Palsy. But, who knows, you’ve just gotta wait it out. You had a brain scan recently, and I’ll-be-fucking-damned, your scan came back normal. NORMAL. Wait what? So it appears your brain has healed itself, which is medically kind of impossible, but as we read your brain scan results amongst all of the docs and nurses at rounds today, everyone was just as surprised, and impressed. They actually laughed in disbelief, it was one of my happiest moments to surprise the doctors and blow them away. Dude, you are unbelievable. Diabolical. You are insane. I can’t even believe it.

So that's where we sit right now. 

You are incredible. 

I am working on getting us out of here. 

Our precious NICU family will guide us along the way. 

Aunt Allie Crushing that Auntie game

Esther, being adorable with you

This is what your G tube will look like.

Ovaries bursting, definitely want to have 18 more babies. 

So I have 2 boys. Dang I'm lucky. 

108 Days II Welcome to Holland!

This narrative gave me an interesting kind of comfort when I read it 2 weeks in to our stay here in the NICU. It is so true, and fully captures what this bizarre experience does to you, and for you. It will break you down to your most raw state. And at the same time will reinvigorate your faith in humanity, in people, in love and empathy. It’s a sad, overwhelmingly beautiful thing. These words capture it perfectly.

Credit: Anonymous (but borrowed from https://themightyjackthomas.com/, which BTW has given me so much strength in this journey. and I fucking hate the word 'journey' now, but whatevs, moving right along....)

WELCOME TO HOLLAND!

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Welcome to Holland!! We are happy to have you here. It’s actually an incredible place.

*******

And what an incredible place this is. It’s a bizarre thing - I would not wish an extended stay in the NICU on my worst enemy, but you know what? Everything is OK here. These people, from the West Pavilion volunteer greeter, to the L&D/Ortho/NICU front desk staff, and the entire NICU family here in the unit…without this experience I never would have known these beautiful souls, and this really unbelievably magical place. This is a corner of the world that I never knew existed but GOSH am I happy I’ve been able to see it and feel it first hand.

These nurses, these women, these angels, have laughed with me, cried with me, hugged me when I needed it, left me alone when silence is what I craved, and given me hope when there was truly such little hope to be given. For this place, I am forever grateful. There really are no words.

Ruby, our NICU mom, savior, our girl, giving Silas his first full bottle LIKE A BOSS.
This woman is unbelievable. 

Silas Update II 97 Days Old II Happy Due Date

40 Weeks Gestation (HAPPY DUE DATE BUDDY!)
14 Weeks Old.
6 lbs 6 oz.
2900 grams.

*Before reading this, I declare a trigger warning for anyone suffering with any death or hospital-related PTSD. Please discontinue reading this post if you are at risk.

As I sit here on your due date, watching you sleep, I am in absolute awe of you, this tiny beautiful miracle. You have been through so much. 97 days of steps forward, and steps back, so much joy and so many panicked tears, but it’s all brought us here to the day you’ve turned into a full term babe. You are 6 beautiful lbs of sweet, cuddly baby scents. You take my breathe away every day and no matter what mood I’m in, even on the hardest of days, I just can’t stay away. A mothers instinct is a truly unbelievable thing - it drives me to do everything I can for you. It wakes me up every 3 hrs in the middle of the night to pump, it has me drinking Mothers Milk tea, eating Mother Honey, and staying as healthy as possible so that my body can provide for you. I cry every day. Usually it’s tears of joy and disbelief that I’ve been so lucky to watch you grow and thrive. Sometimes, like yesterday, it is because my heart aches for all of the families I pass in the hall here in the NICU. To see other mothers whose babies have been freshly admitted, I can see it in their face, in their eyes. They are tattered, red-faced, their eyes glazed over and staring at the ground in despair. Many had no idea they would end up here, and have no clue how long they’ll be here, or if their sweet child will make it out alive. I know that feeling all too well and it is by far the worst most gut-wrenching heartbreak they’ll ever feel. Yesterday a baby a few rooms down coded, and shortly after, he passed away. I could hear his mother wailing, his father comforting this poor distraught mother. My therapist says I have PTSD and let me tell you what, that episode just completely broke me. I sat in our hospital room, listening powerless to this poor family, staring at you, feeling so incredibly guilty that we are healthy and well, but also equally grateful that you made it. We made it. That was almost us when you coded at 5 days old. You were not living for 20 whole minutes. But the doctors were able to save you, we won't leave unscathed and have lots of therapy in our future, but you survived. Thank God. The reality of the contrast of life and death becomes so stark and real in the NICU. Most days are mundane with tiny improvements, all equally miraculous. Then there’s a day like yesterday when dark, scary occurrences remind me to count our blessings, and send love to everyone - in the hallways, in the store, at the bank. Show empathy. Make eye contact. Give smiles to everyone. Because you don’t know what they’re going through, maybe their dog just passed away, maybe they just had a fight with their significant other, and maybe they have a baby in the NICU who is fighting for his life, but she’s just there at Fred Meyer to buy a jug of milk because her family needs to keep on keeping on. I’ve learned so much about life through this experience, and the one biggest thing that I get to take away from this is an immense amount of empathy, for humans, for moms, for families, for every being.

On a much brighter and lighter note, you are doing so great buddy. You graduated off your high-flow cannula respiratory support 4 days ago and rather than transition from high-flow to low-flow, we trailed you off respiratory support completely (it was my call, I’m a doctor now incase you didn’t get that memo) and you are doing great with no support! Your blood oxygen level has been consistently above 92, and actually closer to 100s. You still have a small dip in HR or Blood Oxygen here and there, but nothing too alarming. At this point the name of the game is to get you eating consistently. You are on a combination of breastfeeding when I’m around (typically 2 - 3 feeds a day), bottle feeding when I’m not around, and they’ll do a gavage (hanging) feeding to finish of what’s needed. You’re eating roughly 50 mls each feeding, 8 times a day every 3 hours. I’m producing a little under that but that’s OK. Our last round to bust you out of here will be for you to take all feedings in a bottle. That’s the LAST STEP!! Crazy to think about. No guarantees on how long it’ll take but you’re slowly taking more out of the bottle, so we feel good about bringing you home in the next month or so. But we'll see, it's still just one day at a time. So relax dude, you just keep growing and being the sweetest little thing on the planet. 

97 days ago vs. Today. Such growth!

Chunkmaster Flex in the building

Cannula free! Just a feeding tube!

Power to the swaddle

All of the chins showing up

So many snuggle selfies. <3 

Drake giving us life on our quote board. 

Silas Update II 79 Days Old II We can see the LIGHT!!

37.5 Weeks Gestation
11.5 Weeks Old
5 lbs 1 oz. (FIVE!!!)
2,270 Grams

oh buddy. We are on the up and up (knock on wood!)! Your staph infection antibiotics ran their course and cured your cellulitis in only 5 days. Antibiotics finished Sunday and you’ll be out of isolation (patient zero style) by tomorrow. At this point the name of the game is to get you breathing independently and feeding from a bottle. Those are our biggest goals, along with back sleeping (which you hate, you much prefer to be on your side or belly and you aren’t sorry about it, and of course the dreaded “carseat challenge” where you’ll have to sit in your carseat for 90 minutes, unassisted, but that’s the very last thing, so we’ll chill on worrying about that for now.

Mr. Independent! Now that you’ve moved into an open-air big boy crib and have gained some weight, I’m able to do so many more mom things! I can lift you out of your crib by myself without assistance (this is HUGE), and we can also swaddle you for quick holds for anyone who visits. It’s so nice being able to have just a little bit more control and I’m feeling more like a real mom each day.

The docs have estimated that you’ll be a due date discharge baby. Today it blew my mind to realize that your due date is 18 days away!!! Whaaat? I know better than to bank on you coming home on your due date (7/14), but I can definitely see the light at the end of the tunnel and boy is it shining so bright. Your daddy is doing an amazing job at getting your nursery up and running but dude, I don't even care about being "ready". All I need is a carseat and some diapers and let's just get you home!

Here’s a few brief updates on your sweet little body:

YOUR LUNGS. You are on the nasal cannula with five liters of pressure - this is down from 7 liters (more pressure) on Saturday. You are progressing so well in the lung department, particularly after blowing a hole in your right lung early on. Goal is to get you down to ~2 liters and then we can start bottle feeding you. Also the past 2 days you’ve required ZERO supplemental oxygen, sitting pretty at 21% Oxygen / room air. This is fantastic and means that we might not have to bring you home on oxygen support. Score!

YOUR FEEDINGS. Still through an NG (nasogastric) tube, getting my milk with a little extra muscle milk protein from nutrition. You've done some nipple exploration and showed some interest. Your mama is still undecided whether we’re going to breastfeed - BRB on that front. But for now your intestines and digestion is golden.

YOUR EYES. You showed early signs of ROP (Retinopathy of prematurity) a few weeks ago, which is an early indication you would need laser surgery of the retina and probably glasses for the rest of your life. There are 4 grades and you have a grade 1 in just one eye. They think you’ll actually be fine and heal yourself, but it’s something we’ll be keeping an eye on (see what I did there?).

INFANT MASSAGE! You LOVE being massaged! It’s the cutest ever. The timing has to be right, but you’ve been waking up pretty consistently at 3pm after we get done with skin to skin and I put you back in your crib. We started with your legs/feet and you couldn’t stop looking around the room and cooing the sweetest little noises, mimicking my voice. It was so precious and so very special to see your eyes and face light up at the sensations. I’m def on deck to do more of that, sweet boy. Also it helps map your brain to your skin and limbs, and who doesn’t love a good massage. So much goodness!

Keep on keeping on, baby boy. Before you know it, we’ll be home napping and going on neighborhood walks and having all of the fun at home as a family of 4! My heart nearly explodes just thinking about it. Gosh we just love you so hard. 

Your first big boy clothes!

Awake for longer periods of time!

First nice, soft blanket we brought from home

That little tootin grin though! 

Love those little Sizemore hands

Sometimes you just need a little NICU Rose (Thanks @amystreger!!)

Somebunny loves his Grandpa

Silas Update II Big Boy Crib + Natures Miracles

36 Weeks Gestation
11 Weeks Old
4 lbs 7 oz.
2025 grams.

Buddy. Today was a good day. We’re coming off of a scary weekend where you were diagnosed with a staph infection. Your mama has learned how common both good and bad bacteria is - flora and fauna, apparently we all carry it on our skin, underneath our fingernail and on our beings in our lungs as a natural part of life, but when some of that lands upon someone who doesn’t have the immune system to fight it, we end up in the situation you’ve been in the past 3 days. So the docs have you on antibiotics, but in addition have been prescribed as much skin-to-skin as possible. Since mamas milk is sustaining you, if you lay on me during skin to skin, that infection will transfer to me and my body will create the antibodies needed to fight your infection, which will materialize in my breastmilk and I can cure you WITH MY BREASTMILK. Is this hunger games? Because if so I am basically nailing this Katniss Everdeeen role. Damn, women’s bodies are SO FREAKING RAD!

Also amazing is you've transitioned over to the cannula high-flow today and I cannot describe how much more comfortable you are. It’s no joke that the older preemie babies grow the more they are aware of what surrounds them, and the more annoyed they’ll probably get. You, little man, are showing us just how much you love that high flow life and we are all about it. Your SATs are better, you are sleeping more peacefully, I could not be more pleased with this transition. All you have to do is remember to breathe. So do that please so we can GTFO.

Silas Update II 66 Days Old II TEN WEEKS this Sunday (Wait whaaat?!?)

35 Weeks Gestation.
9 Weeks Old.
3 lbs 15 oz.
1795 Grams.

Last week we happily returned to our St. Vincent’s fam and oh boy are we relieved to be back home with them. Absence (and exposure to a different NICU) most definitely made our hearts grow fonder. We couldn’t wait to get back and we got the most wonderful welcome back: Our girl Ruby was holding watch over you on your first day back and your new room was decorated in all kinds of sweet “welcome home” garb. These people, this place, they are truly something special. They care for each and every baby who comes in here and have a genuine kind of love for you - we are so, so grateful. Each nurse had to come in and see you and they were all so happy Super Silas was back in town with a newly repaired heart.

Since returning to St V’s and post-op, you’ve been steadily gaining weight and are becoming more and more stable. So stable that the respiratory team made their first attempt at taking you off of CPAP support on Sat 6/9 at 35 weeks. It was SO glorious to see your sweet face void of tubes and prongs and plastic bits. It’s hard to not be able to see you underneath all of that gunk, and getting a glimpse of your face in its purest form was all this mama needed to keep going, I got a glimmer of the light that lingers at the end of this long-ass tunnel. You were able to chill off of CPAP for a total of 13 hours, which was really impressive. Ultimately what got you kicked back on to support was a brutal mix of sucking on a pacifier and trying to poo at the same time (I get it dude!). So, you’re back on CPAP for the week but we look forward to trying again this weekend. Not sure yet what that will look like, whether it’s being off of support entirely, or a transition to the cannula, either way, it’s progress. And if you aren’t ready yet this weekend, that’s fine too. We’ll just follow your lead dude.

One of the highlights this week was a bath we got to give you on 6/10, where we got to take off ALL of your tubes and stickies, and you even pulled out your feeding tube so I got to see your face for the very first time with ZERO tubes and boy, did my heart just explode! Thanks for that buddy.

It’s pretty bizarre to think that come this Sunday we will be celebrating you being out here in the wild for 10 weeks. How is that even possible? Have we really been in the NICU for 10 weeks? 2 and a half months? This is blowing my mind. In one way it feels like we’ve been in here for years. In another, it’s just one really long day that repeats itself. Either way, we’re getting there buddy. You are getting bigger and stronger, and the doctors and nurses are starting to refer to your impending discharge date like it’s a real thing. We still have a ways to go but we can see the light little dude. Hang in there. 

Peace out, RCH. Thanks for the heart!

The best welcome home

He was pumped to be back at St. V's.

First attempt off CPAP: Sat 6/9, 9 weeks old

A baby in a bucket!

THAT FACE THOUGH!

All Day Every Day