Silas Update II 49 Days Old II First Bath!

33 Weeks Gestation.
7 Weeks Old.
THREE POUNDS, 1 oz.
1380 grams. 

Getting so big. 3 lbs doesn’t sound so big to most but when you’re born at 1 lb 14 oz buddy, this is a huge gain!  You are at a 7 pressure on your high-flow cannula, eating really well and maintaining stability, just gearing up for our big surgery this week. Ready to make your trip to the big house (Randall) this Tues 5/29 with your big boy surgery scheduled for Thurs 5/31. We've slowly said goodbye to our favs in the St. V's NICU these past few days and while it's been sad, we are holding out hope that the surgery goes well and we can return to our fam at St. V's to finish out this journey with those we've grown to love seeing every day.

This week we celebrated your daddy's birthday on May 22nd. Your daddy loves you so much. He can’t be there to see you every day in person because we also have two dogs and a 7 yr old to keep alive, but I promise you with all his heart he is so in love with you and let me tell you, he shows his dedication to you and us in so many ways. He's doing pretty much all of our daily house chores (including cleaning moms pump parts), he has started to construct your nursery and prep to move big brothers room (when I still can’t even imagine bringing you home), he creates the most meditative backyard oasis, and most importantly he is ready and willing to deal with your mama as my emotional state changes pretty much daily (hourly)? He is rolling with the punches without batting an eye - my rock. He cannot wait for you to come home so you guys can wrestle and chop wood and play ball and do all the boy things. You weren't able to make it out to go shopping so one of your generous nurses made a really sweet gift for your daddy, your hero, in your honor. I can't say it enough, these nurses are HEROES AND ANGELS AND ALL THINGS RAINBOWS AND UNICORNS. (pic below). 

Today mama got to give you your first bath and you handled it like the CHAMP you are! No crying, you were wide awake the whole time and just IN IT (or at least not hating it). You reminded me so much of your big brothers first bath. Just totally chill, taking it all in. Speaking of, you are looking more and more like Sawyer. It's blowing my mind, some of these tiny baby pics just look identical between you and your big bro - I swear you have the same nose, eyes, lips and quirky little newborn smile. Too adorable dude, you are just perfect.

Pre-bath - wide awake

After Bath: being a HAM

MY HEART!

Daddy's Bday Present - a CAPE!

Grandpa's first diaper change - like a boss!

if you need a friend in the middle of the night, I'll be there at 12, 3 and 6am

Silas Update II 43 Days Old!

32 Weeks Gestation.
6 Weeks Old.
2 Lbs, 12.4 oz. <vs.1 lb 14 oz. at birth>
1260 grams. <vs. 840 grams at birth>

Silas, you little amazing little human man! You continue to teach us big grown-up lessons and for that we will forever be grateful. You had a real rough start to life but buddy you are gaining on us and we love it! You have been steadily gaining an average of 20 grams a day, which is all we can ask of you. We hoped you’d gain a bit more weight before you had to have surgery on your heart but after your echocardiogram this week the cardiologist has flagged a new condition that he’d like to take a closer look at so while we were waiting for you to gain another ~500 grams before surgery, you just swerved into the fast lane for heart surgery (sounds like something your mother would do - oof). That means you’ll be taking your first roadtrip over to Randall Children’s Hospital because that is where the best heart care for you is. Sadly, that means there’s a good chance we’ll probably never return to our humble beginnings here at St. V’s. 

We knew heart surgery was inevitable. You have a large PDA but the (best in Oregon) cardiologist at Randall now believes you might have what’s called a “co-art” (a coarctation of the aorta - a narrowing of the aorta). This is the main vessel that delivers oxygen to the rest of your body. The reason this has become a more urgent concern is because this can put more stress on the heart to force more oxygen-rich blood through that narrowed vessel and LORD KNOWS you don’t need even more stress on your heart. So let’s get that fixed, shall we? We are in it to win it little bud.

We have all of the feelings about leaving Providence St. V’s NICU. They are our family, our people. Ruby, Nikki, Janelle, Sherry, Toni, Lee, Melissa, all of these AMAZING people (and many whom I'm forgetting, and I'm sorry), they know you even better than I do. Every single one of these nurses knows you so dang well. They know your avg SAT levels, your preferred sides of rest, how much light you prefer, your venting preferences, that you like a bit of company after your O2 levels change, just ALL OF IT, buddy. I already can’t begin to imagine leaving the family we have built here. But this is what’s best for you, so we’ll roll with it and I will make a promise to our St. V’s family that we’ll be back to show them how FREAKING RAD you are when you’re bigger, holding up the famed Silas name in that NICU since you are the 2nd Silas who has defied odds. We’ll be back, fam, I promise you that....

Thursday, 5/24, Randall Children’s Hospital will have their meeting where your case will be presented to the chief cardiologist (the PNW King of Hearts) and after that point we’ll hear more about how soon you’ll be transferred. We anticipate it’ll be early next week, but maybe sooner.

Other quick news:

YOUR FACE. The breakdown on the bridge of your nose got too major so you were switched from CPAP mask (which was killing your face) to a high-flow cannula nose prong (see earlier blog posts - you really are too young to be on this at all, dude). Your face is healing nicely but it remains to be seen whether you can stay on cannula or move back to CPAP. I imagine your upcoming heart surgery will determine this as I’m guessing you’ll have to be re-intubated during the procedure and recovery. In the meantime dang it’s nice to see your sweet, beautiful, PERFECT face. For now you’re on a Cannula pressure of 7 (which is high, goes from a 2 to 8), so we’re staying kindly realistic here.
YOUR NUTRITION. Eating upwards of 20ml of milk per feeding every 3 hours. Sure it’s “Muscle-milk” which is what I call my breastmilk combined with tons of awesome prolactin and proteins added, but hey dude I still get the credit! and You’re loving it. Pooping great. Burping when you need to. I don’t know any different but the nurses say it’s clear I’m a “boy mama” who finds joy in big poops and projectile vomits. So cool, yes, power to the bodily fluids!

Finally, amidst all if this news and so many unknowns we are SO FREAKING HAPPY to learn that a good friend of ours has a sister who is a NICU nurse at Randall. And buddy, amongst all of the unknowns and insecurities we have about leaving our beloved family at St. V’s it makes your mama feel so much better to know there is someone there in your future home who is a friend. That’s all we need buddy. And from all we know of her brother, she must be a freakin badass - there is absolutely no doubt. We cannot WAIT to meet this angel and are given such relief just knowing she is there.

This week I’ve really become just so excited for you my love. You are really getting stronger. I cannot wait to see what you get into in your life. Based on this experience, you’ve proven you can pretty much crush anything in your path. So dude, we are just here to watch you crush. Thanks for choosing us to be a part of this awesome journey. We are learning so much about you, about life, and about ourselves. Thank you.

We love you.

Actually watching Handmaid's Tail on Hulu but you're cool too. ;-)

Grandma loves

Silas Update II 37 Days Old II "Your Baby Will Never Be Normal"

"Your baby will never be normal" ~ Silas' doctor this week (in the context of his latest brain scan, discussing his progress)

First, let's just file this under SHIT YOU DON'T SAY TO A NEW MOM WHOSE BABY IS IN THE NICU. Sorry (not sorry) for shouting. Even if it is true. I get it. In my work, I live by statistics and numbers, indices and propensities. I understand how things can be more or less likely, but I also have seen anomalies that can't be explained by data or science. So please, you can't make a definitive comment like that. It's not helpful and doesn't exactly fuel the hope we're running on right now.

Second, HELLO CAPTAIN OBVIOUS. I gave birth to a one pound fourteen ounce baby at 26 weeks gestation when my baby bump wasn't even really showing IN APRIL when he was due IN JULY and now we live IN THE NICU. Again, sorry not sorry for shouting. With Sawyer, I was so chill, so nonchalant about everything. With Silas though? You bet when we get home I’ll have a foot monitor and alarms on my phone to alert me of his heart rate, respiratory rate, blood oxygen levels and anything else I can monitor. That’s just how it’s going to be, it’s what I will need. "Normal"? Nothing about this is normal and I would be kidding myself if I believed our lives would suddenly become normal when we get home. Not after this journey, not with what I know. We'll ride on hope but temper our expectations with the facts. All with a big ole cushion of love and grace, it’s the best we can do. 

Sorry for such a dramatic intro to what is actually a really positive health update for Silas! Mama got all mamabear for a minute....Don't test me! ...but hey we're doing good guys!


Here's where we sit... TODAY! 
May 15th. 
37 Days Old. 
31 Weeks Gestation. 
2 lbs, 6 oz.

His BRAIN: I've gotten a crash course in anatomy. So here's my new fancy medical vocabulary. There are 3 things we're monitoring in his brain... 
1. The Hydrocephalus - water in the brain. After his coding episode at 4 days old he showed early signs of hydrocephalus but it never fully developed. We’ve finally reached a good place where docs are confident this is not something we need to worry about moving forward. Score! 
2. IVH (intraventricular hemorrhage) - Bleeding of the brain. The bleeding of his left and right ventricles was a serious concern early on. This was our “Grade 3” or Grade “2” or whatever, which does show a predisposition to CP. This has now been fully stabilized and is improving (the bleeding is subsiding, scabbing over and releasing). Still a floating grade 2.5, but we’ll take it. Happy it hasn’t gotten worse. 
3. PVL (periventricular leukomalacia) - This is a white-matter brain injury, which is essentially the death of small areas around where the ventricular swelling occurs. Also increases chances of CP. He has a few spots of PVL on the right side.


Silas’ latest brain scan showed the following: 
- right lateral ventricular enlargement is resolved, several small cysts exist, none are too concerning at this time 
- left lateral ventricle shows persistent debris (scabbing over from IVH) with stable minimal enlargement and persistent increased density of the ventricular lining (a good thing, means they can read more of his brain as it’s developing and getting stronger 
- The remainder of the ventricular system is normal. Midline structures and cerebellum are “unremarkable”. “Unremarkable” is a neurologists way of saying boring, or good, as we like to read it. ;)

His HEART: PDA (hole) still exists but we’re all impressed by its ability to heal itself (get smaller) given the medication and protocol he’s been on. He will eventually need surgery but we’re waiting for him to gain a bit more weight so he can better recover from said surgery. Goal is 1,500g - 1,800g, best case 2kgs. So he’s got a ways to go. They’ll fix it in one of two ways: either a heart ligation, which is basically open heart surgery where they go big into his left side (leaving a big scar), and just jump right in. Other (preferred) option if the babe can handle it is to go in with a coil through his femoral (leg) artery and push a coil up through his leg and then place a blocker in the ductus, which would ultimately close on its own over time with a strong protocol of nutrition using lipids and blood pressure meds.

His LUNGS: Lungs are going SO strong now that he’s healed from the puncture that occurred very early on.. He’s on CPAP and is doing really well with it. CPAP range is 10 - 5, highest pressure to lowest. If they go over about a level 9, that’s a sign the babe should move to the higher support, more conventional ventilator. Once the baby gets to a level 5 support pressure, that’s a sign he should be ready to try moving off the CPAP. Silas has always been on 7 to 8 level pressure. He was just moved down to a level 6 two days ago and is doing great on it! Baby steps, looking so good.

His NUTRITION: He’s officially off of TPN and lipids (his artificial nutrition needed bc he was too sick to eat mamas milk 100%). He was expected to take a dip in his vitals/weight gain after he got off TPN (a week ago Friday), but he hasn’t gained as much weight as they would like. Goal is to gain ~20grams a night but his nightly gains/losses have been all over the place. What’s really awesome is that nutrition is able to supplement my milk with prolactin (like Muscle Milk for babies), and add as much calories, fats, and proteins as they need to. So they just started pushing more calories and fats his way, and I am just so grateful that this science even exists! so crazy. They’re talking about starting to introduce the breast in the next week or so. I guess just check it out, smell it, look at it. Weird, but OK.

His SKIN:
1. The bridge of his nose: Poor boy’s skin is just so frail and sensitive. Every 6 hours the RT’s (Respiratory Therapists) switch between nose prongs and a nose mask. He had some skin breakdown on the bridge of his nose caused by the mask, but also had some sensitivity in his nose caused by the nose prongs. Poor guy just cannot win. They have this amazing stuff that heals injuries in like 24 hours called MediHoney, and Dewiderm - so they’ve been layering that stuff and it’s been working OK. If that doesn’t work they may put him on high-flow nasal tubing for 24-48 hours just to give his poor face a rest. We have another friend in the NICU who was on CPAP for a very long time, and his face is just beautiful now that he’s off of it, so this gives us hope that he won’t permanently have a red, swollen and wrinkly face. ;-) (shout out to Memphis!).
2. His right inner elbow where his PICC line went it - looks to have some white scar tissue where the line dressing was. This will most likely be a permanent discoloration/scar. And that’s OK. War wounds buddy!! The ladies will love it, I promise.
3. His right thumb tip. Was dark purple from his thumb nail on up. This was due to the infection he was born with. PT’s (physical therapists) and Wound Care have been perplexed with how to handle, but with them working together so diligently, his thumb has now shed the dark purple scab with beautiful pink flesh growing underneath, and it looks like he’ll get to keep the tip of his thumb! We had all written it off, even the doctors, and to be honest with everything else wrong with him, we were fine letting his thumb go as tribute, but miraculously his thumb had other plans and has regenerated and is looking normal as it ever was! Crazy!

As for mom and dad? We are doing fine. We’ll be taking an infant massage class tonight (ummm, heyyyy, can we get a mama massage class? or maybe just a nap? haha). Down the road we’ll also take an infant CPR class when he's closer to discharge, which feels like years but it won't really be. Over the next couple of weeks we'll be working to build up to breastfeeding. Since Silas wasn't born at term, it sounds to me like we basically have to teach him how to breastfeed. That should be interesting. In the meantime I’m pumping every 3 hours and let me tell you, it’s so much harder to wake up in the middle of the night to pump when there is no baby screaming at you to wakeup. Sorry to my sweet husband who some nights has to hear a continuous alarm snooze button every 9 minutes.. for like 45 minutes. Eesh. But we get it done and damn that milk is stacking up in the deep freezer (which otherwise would house Steve’s elk - good thing this happened before hunting season)! So proud of that milk and my bodies ability to acknowledge this sweet baby even though he isn't home with us. Women's bodies are pretty damn incredible!!!

Look at that thumb! Good as new!

Happy FOUR Week Birthday, Silas Wilson Sizemore!!

As we’re still sorting out the right words for your birth story, I didn’t want to let todays milestone go by without putting down some thoughts. Today you are 4 weeks old. 28 days old. 30 weeks and 1 day gestation. What an absolutely wild roller coaster ride it has been so far. I’m going to keep these notes to you really honest. Because I owe it to you and I owe it to this process. We are pretty emotionally raw right now, I can’t imagine being able to write to you in any other way. I was driven to write to you today because if I’m being really honest, this last week was the first week that I started to truly believe and accept that you are here to stay - with us, in our lives, forever, or at least for as long as you are meant to. It’s a weird, bizarre, out-of-body feeling to welcome a baby into this world and not know how long this sweet babe will stay. What do you say to someone who just welcomed a baby into this world so far before he was due to arrive? "Congratulations?” That feels trite and premature. “I’m so sorry?” We are talking about a sweet baby boy, whose entry into this world, no matter how early or short, would never ever merit an apology. This dilemma helps me sympathize with our friends and family who I’m positive have struggled with how best to support our newly expanded family of 4 - we see you, every one of you. We have felt all of the emotions - from pure joy to being absolutely terrified, and everything - and I do mean EVERY thing - in between. We share the same dilemma as everyone around us: how do we act? Are we happy? Are we sad? Are we scared? The answer is yes. Yes to it all, all of it, and that’s OK.


The guilt that’s been gnawing at your mama is that I want you to feel the same joy and love and happiness that your big brother was showered in when he entered into this world. I want you to feel my happy cry when I got to hold you on my chest right when you were first born, I want you to receive the early day-old blog posts of my utter and complete love obsession with you, I want to proudly post on social media that our sweet little bundle has arrived, most importantly, I want you to feel loved and cherished and acknowledged as the special little soul that you are, right from the day you are born. The truth is, your story will be different, but very uniquely yours. Your quick, unexpected charge into this world was anything but sweet, I'll be honest. It was a little less of a sweet, beautiful whisper from your mama “oh hi sweet baby boy” like it was for your brother, and more of a pained, terrified, no holds barred scream “OHHHHH FUCCKKKKKKKK, NOOOOOO!!!”. It’s taken us time to really wrap our heads around this unexpected little bundle, but I wanted to take this day to say welcome, my sweet baby boy. I’m sorry that it’s taken us (me?) a little longer to get my sea legs and put down in words just how happy we are to see you, and have you in our family. It's all true though, our love for you. It's been in our hearts since day one, it has just taken us a while to find our voice, the words, and our courage.

Sunday, May 6th.
4 Weeks old.
28 Days old.
30 weeks, 1 day gestation.
Feels like both a lifetime, and one run-on day in the NICU.
I can summarize your mommy’s emotions each week pretty quickly:
Week 1: Shock and awe. Disbelief. Not understanding what has just happened. Make-believe. Uncertainty. The unknown. Very much a dream state. We’ll be FINE! (right?)
Week 2: This is my new routine. Ok, I can do this. Feeling strong, put together, I can totally deal. Actually in survival mode. Pushing all emotions aside and dealing with it like the freakin BOSS that I am.
Week 3: Total mental breakdown. Already been here in the NICU for too long. And we have how far to go? How am I going to do this? Thank God for Sawyer, and Scuba, and sleep, and wine.
Week 4: Acceptance (I think? maybe? hopefully!). Settling in. Allowing myself to feel everything, bask in the raw, soft, fragile emotions that swirl around me and strike at any moment. I will stop apologizing for the occasional 24-hr sleep binge (obv still waking every 3 hrs to pump), or the spontaneous crying outburst at the Fred Meyer check-out. Allow all of the love in, feel it, embrace it, accept the vulnerability that is this experience. (HUGE credit to the book The Places That Scare You: A Guide to Fearlessness in Difficult Times by Pema Chodron…highly recommend).
PS - I’m sure that I’ll read this in another month, 6 months, year, and laugh and how I thought this week was the week I reached acceptance. Alas, it’s what I think…now. hah.


Buddy, already you have given us such a gift. You’ve given me a gift. Your mama is a strong, stoic, emotionally unavailable, very proud and controlled human. I open up to very few. Not many of even my closest friends have actually seen my cry in YEARS. Even your daddy doesn’t see me crack very often at all. And here I am, open, vulnerable, crying in front of strangers (and then quickly removing myself from the situation), and leaning on those closest to me when I need a shoulder (even if it is just via text msg). It’s true that your daddy is still my person and one of the only whom I truly open up to in that way, but that sphere is expanding, because it has to if I’m going to survive - and that is just one of many gifts and lessons you’ve taught me. Be vulnerable. Accept each feeling and emotion as it sits. Bathe in it, sit on it, it is OK to not be strong all the god damn time. But as I think more about what all of this means, the emotions that I cannot control and am physically unable to push down and away, this raw, intense, overwhelming movement in my soul could mean only one thing: That I just love you so, SO HARD, my love. I spent the first week or two protecting myself from acknowledging how hard I loved you. You were born very sick, each day was a new challenge, and I was silently taking it all in, trying not to waver, but still pretending it was possible to hold back (lying to myself). And then it happened. One day I will never forget: Monday, April 23rd, you were 15 days old. You were finally well enough for me to hold you skin to skin on my chest for the very first time, and in that moment, all bets were off dude. I couldn’t hold back any longer. You were mine, and I was (and am) yours, so happy you are here and your sweet soft skin and tiny little body and those beautiful little breaths and tiny noises and micro-preemie hands and fingers and feet and tiny toes, they are all absolute perfection and everything you, everything we, were always meant to be here for.

So I’m sorry it took a minute, but please make no mistake. We love you with all of our hearts, me, your daddy and your big brother. You have the STRONGEST most amazing army of friends and family who are thinking and praying and meditating and sending good positive healing vibes our way. We will thrive and we will all grow in awesomely new different ways thanks to you, our wonderful, beautiful sweet baby boy. 

We love you so, so much, babe.

*This Magic Moment*
Monday, April 23rd

Silas Update II 26 Days Old

Little guy has been steadily gaining weight throughout the week, proudly boasting a weight of 2 lbs 3 oz (990 gs). Now that his infection is gone and his body can focus on forward progress and growth, he’s really crushing it out there. He’s also earned a solid reputation for being a super pooper and super burper (daddy couldn’t be more proud), having 2x strong regular poops a day at the same times each day (normally preemies need assistance getting this moving), and (newly) strong lungs that are able to projectile burp and barf, spewing milk all the way up to the ceiling of his isolette. Nice work, big boy! Also big this week was getting to hear his little baby cries and OH MAN MY HEART!! This guy is not a fan of his CPAP nose prongs and he wants to tell everyone about it. The past few weeks I have wanted so bad just to hear my baby cry and it was just the best (video below).

We got a solid amount of good news today…
His heart: He had another echocardiogram done this morning to see if the medication he’s been on since Monday has been effective (and to see if we can delay surgery a bit longer) and it seems his PDA has decreased in size from “advanced” to “moderate”. Hey, we’ll take it! That medication protocol was up today, so the doc is going to extend the ibuprofen through Monday and we’ll re-scan then. The doc has warned that surgery is likely inevitable, but ideally we’d like to wait to operate until he weighs a little more and could better support his own recovery. Goal is to get him up to 1500-1800 gs before we have to think about surgery.
His feedings: His baseline nutrition has been via TPN, an artificial nutrition given via a PICC IV line in his arm, and then they’ve been supplementing with breastmilk to prime his intestine and get it working well. He’s been doing great with his feedings, advancing a bit more each day, having gone from 6mls on Monday up to 17 mls today (Yowza). The good news is that since he’s tolerating his feedings and gaining weight, the doctors are discontinuing TPN and putting him on 100% of my milk moving forward. This is best for him as it will help him grow the quickest, and TPN is also harder on his liver, which we’re trying to watch anyway. So, he’s getting bigger and stronger and hopefully we’re about to see him continue on his slow and steady improvement to health. We’ve been warned that some babies respond negatively to the lack of TPN in the first day or two after it’s discontinued, so we’ll work on being patient over the weekend as we look to next week for his body to regulate.

Moving forward: Monday will be another big day of a full panel of test results, another echo and another brain scan. In the meantime, we’ll just keep chugging on the snuggling.

Oh, and if you know a NICU nurse, please call them or text them and tell them we said thank you for everything they do every day to keep these tiny humans rocking. These nurses are literal angels on Earth.