Dear NICU Mom,

This isn’t what you pictured. This isn’t what you wanted. This isn’t what you planned for. It wasn’t supposed to be this way.

But this is how it is. This is your new normal. This place will be your home for the next 20, 30, 100, 200 days. And it’s going to be okay. You will survive this. And Mama, you are not alone.

This journey will be hard. There will be days you feel like you can’t keep going. But you will. You’ll muster the strength. You’ll borrow others’ strength. There will also be days when you are so overwhelmed with joy that you feel like you will burst. I know it sounds crazy, but you WILL have those days in this place.

Every NICU story is different; they don’t all start or end the same. Remember that when you start to compare. Then, stop. Your story with your baby (or babies) is yours. No one else’s. Your ups and downs will look different. Your ups might be someone else’s downs. Your downs might be someone else’s ups.

I remember sitting on my phone in my son’s care-space scrolling through Pinterest looking for blogs that would tell me how to get through this. Something that would make me feel like it would be okay on the days that felt so far from it.

So, I am here for you now, Mama. It’s going to be okay.

If your baby was born early, you didn’t do anything wrong. Your body did not fail. You are not less than because you didn’t carry to term or because your pregnancy didn’t agree with you.

If you are here because your baby has genetic anomalies or medical issues, you did not do anything wrong. You are not being punished. You are now among the lucky few (myself included) who will get to experience the deep joy in parenting a complex child. Yes, it will be hard, but just like this NICU stay, you will have the strength to do it. It’s not what you envisioned, but it is going to be okay. More than okay. You will learn. You will grow. You will be shaped in ways you never imagined.

If I can give any practical advice it would be the following:

  • It’s okay to admit that this sucks. You didn’t get the birth or the newborn experience you dreamed of. You can cry and be angry.
  • Get primary nurses. If you and your baby connect with a nurse, ask her to be your primary. She will then get to take care of your baby every shift she works until you are discharged. This continuity of care will be so important. She will know your baby which means she will pick up on slight changes others might miss potentially catching problems before they become problems. She will become family to you guys. You’ll feel at ease when you walk into the care space and see her face. It will be easier to leave to take a walk, eat, shower, and sleep when you know the person caring for your baby. Ask for as many primaries as your hospital allows.
  • Don’t feel guilty for leaving. This is one I struggled with, and over a year later, I still struggle with. I wonder if I spent enough time in the NICU every day. I wonder if I was selfish for sleeping in some mornings or taking a longer lunch to meet with friends. Your heart will betray you on this one. It will always feel wrong to leave your baby, but you need to do it to be able to keep going. You may get to the point where your nurses will more or less have to kick you out so you will take care of yourself. I did. It sucks feeling like a “part-time” mom, but this is only a season. It will pass, and until it does, you need to take care of yourself.
  • Don’t apologize. Whatever you need to survive this is okay. If you need space and to be alone with your baby, that is okay. If you need help keeping your house clean, getting meals delivered, lawn care, errands, etc, that is okay. Every family will be different in how they need to be cared for when they are in the NICU. Figure out what you need, and don’t apologize for needing it. Those needs may change depending on how long you are there, and that is okay too! Do not sacrifice what little energy you have catering to other people’s view of what help should look like. Your only concern is you and your baby right now. Be honest about what you guys want/need during this time.
  • Find ways to make your baby’s care space feel more like home. Decorate as much as you are allowed. It’s these little things that will make you feel somewhat normal. Bring a blanket and pillow from home for yourself. You’ll need to nap, so you might as well be comfortable.
  • It is more than okay to become a “germaphobe.” Your tiny baby hasn’t developed the immune system that other babies have. People may have a hard time understanding this, but stand your ground. Depending on when you go home, you will more than likely need some form of isolation to keep your baby safe. Be selective about who you have come over. Be the “crazy mom” who makes everyone wash their hands to the elbows for two minutes before touching any surface in your house. Be the mom who doesn’t let others hold your baby for a while. It’s okay! That time will come.
  • Speaking of holding. It’s okay to be selfish with your baby. Hold him/her as much as you can, and don’t feel obligated to share. The NICU experience robs you of so many of those newborn snuggles. It’s okay to make up for lost time and not share for a while.
  • Find your silver-linings. Every day, find three things to be thankful for. Did your baby make a cute noise? Did your baby take his/her first PO feed? Did your baby go more than an hour without a desat? No victory is too small to celebrate. Some days, it might feel harder to come up with three than others, but I know you can do it. Even if you just sit in the fact that you guys all made it through one more day, that is enough.
  • Ask your nurses what supports your hospital has for families. Think about which of these supports feels like your style, and use it!
  • Get on Facebook groups for families like yours. Online support groups are such a gift when you are trapped in the hospital. There will be strangers who “get” your situation more than your closest family and friends. You need those people. And they need you!
  • Be honest about how you are doing. PPA, PPD, and PTSD are so common in NICU moms and dads. Take care of yourself so you can take care of your little one. There is no shame in asking for help.
  • Don’t forget that you are a good mom–wait, the BEST mom. It looks different than you expected, but you were made to be this little person’s mama. You can do this.

I am cheering you and your little one on. You are a warrior, Mama.

Q&A with Evan

First, I want to say how fun it was to hear questions from you all! I am excited to answer them for you so you can get a better look into Evan’s wonderful little life! I think after this post, I would love to just add on to every post from here on out with answers to anything y’all ask in between! That way, you don’t have to wait over a week for an answer when I choose sleep and snuggles over writing.

What illness does Evan suffer from?

Well, the short answer is “I don’t know.” The long(ish) answer is we’ve done some genetic testing so far, and it has all come back normal. However, we’ve learned that genetic testing is so much more complex than we could have imagined, so it may take a while before we can truly figure it out. There is one test that is newer called an Xome study, but we would need more clinical information (concrete diagnoses) before we can do it or we could get a false negative. We are also scheduled to go to John’s Hopkins this summer to see a genetic specialist to determine if he has a rare form of skeletal dysplasia (there are over 400 different kinds). So for now, we don’t know. And honestly, we may never know. And that’s okay. I will just keep calling it Evan Norton Syndrome where the biggest symptom is being the cutest and most precious child in the world.

Will Evan outgrow all of his medical needs?

Yes. And no. And I don’t know. Yes, he will very likely outgrow is breathing issues. Yes, he will very likely eat by mouth one day for all of his nutrition and hydration. No, he will not outgrow whatever his genetic condition is; you can’t outgrow genetics. And a whole lot of I don’t know. His hypotonia is pretty severe seeing as he is almost ten months old, and this week I witnessed a three week old kicking his butt in tummy time. But to be fair, I think that baby is just super advanced. So as far as his motor skills, I would say he’s a giant question mark. But we believe he will walk and play and be the awesome person he was made to be just in his own time! We run on Evan’s time for everything here!

Have you had a chance to meet/talk with other families with needs like Evan’s?

Yes! And we are so grateful! There are so many online communities available to parents of medically complex kids. We also have made good friends with one of Evan’s NICU nurses, Martha, whose kids have similar needs to Evan’s. She has been one of our best resources and supports. We also have a group where we live that meets once a month. I can’t wait to go when we’re off isolation and maybe (hopefully) a little better rested.

What are some things you are looking forward to seeing Evan do and experience in the next year?

Oh, so many things! What a loaded question! I am looking forward to him gaining more motor skills so he can better experience the world around him. I am looking forward to his first birthday which feels so close. I am looking forward to him meeting his little friends he talks to through Facetime, Marco Polo, and videos in texts. I really want to take him to the aquarium when we go to John’s Hopkins, but I am also super nervous about being in a crowd like that with him. But, its far away still, so plenty of time to get used to the idea! We’re also excited, and nervous, to take Evan to church for the first time this spring. It’s a big crowd, and it will be loud, so I don’t know how it will go, but we will sneak in the back and probably sneak out too. I am also excited for a day when I can run errands with him! I am very tired of this isolation gig, and I think the fact that I can see the light at the end of the tunnel is making it worse. Oh well! I know I’ll miss these days of snuggles and playing at home one day, so I shouldn’t wish it away. I am also very, very, very excited for life with no MRSA eyeball.

What do you need for Evan (in terms of items that can help with his development)?

We have a lot, but I am sure there’s always something! Several people have asked for specifics on this one, so Alex and I are working on what would be our “wish list” for little E. Sometimes we don’t know what we need until we need it.

Do you feel like you have community?

Yes! Our NICU/PEDS family has been amazing for us. We’ve kept in contact with pretty much everyone from the NICU, and Evan’s primaries have become my best friends. It’s been such a sweet blessing that came out of such a hard time in our lives. We’re really excited to be able to truly dive into a new church community this summer too. We’ve had so much support from family, friends, and even strangers throughout our journey. It’s so amazing to see how the Lord moves and shows us His provision when we need it most. Now, I will say that sometimes I do get lonely and feel forgotten or misunderstood as a mom. But I know that most of that is my own insecurities and lies I let myself believe. Overall, in most hours of most days, I feel incredibly blessed and loved. There’s nothing sweeter than watching other people love your kid.

Before Evan, did you or Alex have any medical experience or training?

Yes and no. Alex is a certified EMT, so he has had a lot of experience running calls on the ambulance. I, however, have no training other than what Grey’s Anatomy has offered me. That show seriously misrepresents premature babies and their appropriate care, by the way. Alex has a lot more confidence than I did at the beginning when we were still in the NICU. I was always so afraid I would hurt Evan. Learning Evan’s stuff has actually been super easy though. We had amazing nurses in the NICU too who really made sure we were prepared for everything long before it would happen. I also really like to fully understand what is going on with him, so I ask a lot of questions and do my own reading (within reason). Side Note: Do not Google your kids’ symptoms or random diagnoses without specifics in mind, mamas! You will always come to the conclusion that your kid is dying. Information being so readily available is definitely a blessing and a curse. But, it is nice to get a deeper understanding when you have specifics to research. I get asked often in doctor’s offices if I was a nurse or they assume I worked in the medical field before staying home with Evan. My answer is always, “Nope! I am just Evan’s mama.” My fellow special needs moms out there can definitely relate, I’m sure! Oh, and I used to be so queasy around blood and needles, but after watching your kid, who is a bleeder, get stuck about a thousand times, you get over it.

What kinds of therapies does Evan do?

Evan sees a speech therapist and a physical therapist each twice a month. They come to our house which is so nice because I don’t have to get out of my pajamas…seriously, I look like a dumpster fire every time they come. Speech therapy is focused on getting Evan to eat by mouth. We started with pacifier work, and we have moved up to spoon feeding! Evan has a very weak swallow reflex, so that has made it difficult to do liquids from a bottle. His suck pattern is also inefficient. Since he is almost ten months now, our plan is to bypass bottle feeding and move on to baby foods then hopefully work towards taking liquid from a sippy cup! He has been doing surprisingly well with the baby food. Today, he ate 1.5 teaspoons of apple at one of his feeds! He takes very small bites, so a goal is to get him comfortable accepting and handling more in his mouth at one time without getting overwhelmed and choking. With physical therapy our goals are mostly centered around reaching milestones and working on his poor flat head since the helmet hasn’t worked out for us yet. We do stretching to move his head to the right. We lay him on his right side to get him more aware of that side of his body. We assist him in rolling over from back to belly and back again. We do a lot of tummy time to work on his head control. At one point early on, and even still now, we do massage and light joint compression to get him to accept touch and not get overwhelmed by it. It also helps him be more aware of his body. Essentially, he has to learn that he has hands, feet, arms, and legs that can do things if he wants them to. Since Evan has pretty severe hypotonia, he will need to work a lot harder than other kids to reach even the simplest milestones which makes it so much sweeter when he makes any progress. We don’t take any of it for granted. Also, I feel like it is important to mention just how much we LOVE our therapists. Every single one we have worked with in-patient and out has been amazing.

What’s your Starbucks order?

This one makes me laugh. Y’all know I love (and need) my coffee! It all depends on my mood! My go-to’s include: iced coffee with cream and vanilla, a pumpkin spice latte (because I am a basic white girl), a vanilla latte (hot or iced depending on the weather), a latte with two pumps of vanilla and two pumps of cinnamon dolce (it tastes like a snickerdoodle), a hot white chocolate mocha, or an iced caramel macchiato. When I was dairy free when I was still pumping for Evan, I would get a cold brew with one pump of vanilla and a splash of almond milk. I also get bacon, egg, and gouda breakfast sandwiches, bacon sous vide egg bites, and chocolate croissants. Wow, seeing that all typed out makes me feel kind of gross but also kind of thirsty/hungry.

What color are Evan’s eyes/hair?

Both are light brown! He’s very handsome.

Why does him being upright (like in a carseat) cause him to have a hard time breathing?

A lot of preemie babies are very positional with their breathing, meaning they can breathe more easily when their necks (airways) are straight. When a baby is in a car seat, especially before head control is in play, his/her chin comes down to the chest. This causes the airway to become more narrow (I think?), so it it harder to breathe. Evan’s airway is so temperamental. In the NICU, we would have to change the way we were holding him often or some days not hold him because his breathing couldn’t take it. He breathes best when he is on his belly since his neck is extended, but he also hates being on his belly. Luckily, he is getting better! We are actually going to try to car seat test soon to get him into a regular seat again! Goodbye, giant cooler!

This is Evan’s car bed up close! This was from when we learned how to use it, so were in a hospital room not a car.

Do you see your family staying in Roanoke for a while?

Yes. 100% yes. Just the thought of changing his care team if we were to move makes me queasy. Right now, he has a team of about 20 doctors and therapists who see him. We love them, and we trust them. We do not want to leave them…ever.

What is he allergic to?

Milk protein and his old helmet! The verdict is still out on his new helmet. We got it yesterday.

What size clothes is he in right now? And is getting him dressed harder with all of his tubes and wires?

He wears 6 month clothes currently, but I think he might be in 9 month by the end of March or early in April! He is due for a growth spurt. Getting him dressed is just different. Not harder. We have to feed his feeding tube and pulse ox wire through his onesie, and we always have to go feet first with them because of his cannula. We are very thankful for the way onesies are made! With sleepers, he can’t do ones that zip up unless we were to cut holes in them for his feeding tube and pulse ox. In the NICU we could get away with his cords coming out the top for two reasons: he was almost completely immobile and he was monitored 24/7 by machines and nurses. Oh, and he needs mittens always now because he won’t leave his cannula alone! We found some that have velcro so we can tighten them to stay on! Goumikids is the brand–highly recommend! I really just want every product they sell in Evan’s size.

How has your faith grown since becoming a mom, and what scripture have you found you’ve been clinging to?

In the NICU, Psalm 61: 1-3 was my constant prayer and even now, I go back to it so often. “Here my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy.” Being Evan’s mom has made me lean on Jesus more than I have in my entire life. I think of Job too; he experienced so much suffering and loss, and at the end of it, he was grateful. He said “My ears had heard of you, but now my eyes have seen you.” (Job 42:5). I remember talking about this verse in a campaigners lesson I gave when I was a Young Life leader. It still stands so true. In the pit of despair, that is when we are most aware of our need for God. That is why we can be grateful in suffering. We are given a unique chance to have an intimacy with the Father we never would have found in different circumstances. We are given the opportunity to truly trust Him fully and surrender to His will. I love my God for who He was yesterday, who He is today, and who He will remain to be tomorrow. He is GOOD. Always. I could probably talk about this question for days.

How do you care for yourself in this season of constantly caring for Evan?

I just chuckled at this one. I am still figuring it out. And, I think, depending on the day, “self-care” looks different. Some days its giving myself the grace to look like a human piece of garbage in public and not care. Some days it’s drinking a lot of coffee (okay, most days). Some days it’s taking five more minutes to just stand in the hot water in the shower. Some days it’s actually taking a shower. Some days it’s taking a nap when Alex gets home from work or sleeping in on the weekend. I’ve gotten two pedicures since Evan was born too. My feet wish that number was higher. And some amazing friends and family have gotten me gift certificates to my favorite place for facials and massages! I also think caring for myself is in making time for Jesus every day which is my Lenten goal! I can so easily find excuses to not make time for scripture and truth and prayer in my days. But this Lenten season, I am going to call myself out on my crap and not make excuses. When I lean into the Father, I am a better mom, wife, sister, daughter, friend. I owe it to the ones I love to be in tune with the Spirit.

How has parenthood affected your marriage?

Honestly, it has made me love him so much more. Obviously, there are times when we get frustrated with the other–usually due to lack of sleep, caffeine, or proper nutrition (usually all the above). But that’s normal marriage I would say. No relationship is perfect. Entering into parenthood is stressful. Entering into it under the circumstances we did was, well, I don’t think there’s a word that would suffice. I would equate it to expecting a light breeze and stepping outside right into a tornado. It’s been hard, but it’s been good. Watching Alex love Evan is probably my favorite thing in the world. Watching him fight for and advocate for him is incredible. I am so lucky to have him as my parenting partner. When one of us is having a particularly hard day, the other (usually) just picks up the slack without even being asked. We always say, “We are a team.” Sometimes we say it just to reassure the other person that they are doing a good job, and it’s okay to have an off day or be tired or frustrated or need a break. Parenting has forced us to be more honest with each other about where we are emotionally too. We know we can’t be our best for Evan when we are spent, so we need to rely each other more in those moments.

Has Evan’s personality started to come out?

I would say it’s always been evident that he is dramatic and stubborn. In the NICU, he would hold his breath to get attention or make someone go away if they were trying to get him to do anything that required work (we’re sorry, Sam!). When Evan says no, he says it loudly. But I do think he is getting more aware of the world, so he’s just more fun! He laughs when we tickle him. He flirts (always!) with his girlfriends when they come to see him. He looks so pleased with himself when he does certain things (mainly pooping). He loves music, and now that we have confirmed that he can hear in at least one ear, I know I’m not making that up. He hates napping and usually only does it for his daddy. He doesn’t like to be alone. He hates his helmet (old and new). When he wakes up in the morning, he demands attention. His newest love is this little blue elephant stuffed animal with a bell in it that jingles. He thinks that thing is hilarious. So yes, he has a big personality, and it’s amazing. It just keeps getting better.

What’s in your diaper bag?

This one requires pictures. I love that this was asked. I wouldn’t have ever thought to share about our diaper bag on here. Our diaper bag isn’t actually a diaper bag; its an EMS medical bag. It is large and heavy and not at all like the cutesy ones we got from our registry.

Excuse my toes.
Evan wanted to be in the picture. This is what it looks like on…big haha. Typically his oxygen tubing would be going into the bag, but this was just me wearing it for show not actually using it.
A slot for everything we need including an oxygen tank! Top mesh pocket: diapers, wipes, and butt cream. Bottom mesh pouch: extra outfits, burp cloths, and washcloths.
The front bottom pocket: emergency button kit if we need to change out his G-tube.
Front top pocket: emergency essentials (gloves, a syringe for g tube venting, tegaderm, and the bulb syringe lives in the cup holder of the stroller) and my wallet.
Red pouch: G tube care and emergency essentials.
Orange pouch: mom and dad essentials for unexpected hospital stays.
Yellow pouch: airway supplies and emergency essentials.
Blue pouch: oral care and back up pacifier.
Not in the diaper bag, but an essential part of traveling with Ev: our suction machine. Evan’s got some grown man boogies and spit that he can’t handle, so this thing has (literally) saved our lives.
Also not IN the bag, but so important to take with us: his monitor! This is a picture of it on the floor of my car because the sun was making it impossible to read in my passenger seat. Also pictured: a full back up oxygen tank. That bad boy lives in my car and for good reason! As you read the other week, it has come in handy!

So our “diaper bag” isn’t really a diaper bag and doesn’t all fit in one bag. But, we’ve got a good system that works for us. Just realizing I completely forgot to add in his little backpack for his feeding pump! Duh, that’s so important. The kid’s gotta eat. Whoops.

What upcoming surgeries does Evan have?

Well, I’m glad you asked! He has surgery TOMORROW! Or today, depending on when you read this. March 8 at 7:15AM he undergoes surgery to correct his clogged lacrimal duct which is the reason for our chronic MRSA. They will also do a sedated eye exam to get a better idea of his vision and internal structures. Last week, ENT was able to piggy back onto our surgery, so they will do a sedated ear exam and most likely place tubes in at least one of his ears if not both! I am so thankful they were able to coordinate and make this happen. Please pray for peace for Evan’s mama and daddy as surgery is never fun. For energy for us (mostly me) since it’s 10:40 and Evan still has yet to go to sleep, and we have to be up at midnight and 3AM then leave the house at 4:30AM. Pray Evan goes to sleep soon if your reading this right after I post it. Pray for his doctors and nurses. Pray for no issues with intubation. For easily managed pain after surgery. For a clear call on whether or not we need to get admitted for a night. For easy recovery and success in all the things!

THANK YOU!

I really liked getting to hear from you guys for this blog post. Thank you for sharing in our story and our adventure with Evan. In the future, I’d love to just tack on questions and answers to the bottom of posts. So send them my way whenever you think of them! Also–If I missed your question in the midst of my sleep deprived mom brain trying to relocate them all this evening, please send it again! I’m sorry!

Mom Envy

As I sit to write this post that I’ve had on my heart for months, I keep feeling like I shouldn’t. Mom envy is something every mother experiences at some point. It’s a nasty, ugly part of us, but we all have it. Because, well, sin. Duh. We are not perfect people who can be content in our circumstances at all times. We see what someone else has or doesn’t have, and we want that for ourselves because from the outside it may look better than the hand we’ve been dealt. All the while, that mom we envy so much may envy us. It’s an ugly cycle of lies we are made to believe about ourselves as women, as mothers, and as daughters of the King. We all do it, but I feel like we don’t talk about it.

James 5:16 calls us to confess our sins to one another so that we can adequately pray for each other. So I guess here is my confession. Here are the lies I let myself believe about our life. Here is my broken, sinful heart that compares my life to those I see around me.

I should first start with the disclaimer that I would goes without saying, but I will say it anyway. I love my son. I love my life. I truly do. I am so thankful for the adventure God has called us to in being Evan’s parents. In my eyes, he is the most perfect, sweetest baby. And because that is where my heart truly lies when my head is clear, I feel so guilty for the envious comparisons I make with the mothers I am surrounded by. That is what makes me feel like I shouldn’t put these words on a page, but I have been encouraged by a friend whose opinion I value and trust that this is a topic that really needs to be shared because even if the situations are different, all moms can resonate with the emotion behind it. I also feel like it’s near impossible to write about this topic without coming off like I am looking for sympathy. I want to be clear; I am not. I want to be understood, and I want my story to be known, but do not waste your energy feeling sorry for us. We have the most amazing kid in the world whose life brings us to the foot of the Cross daily….really, I feel sorry for all of you. Evan’s not yours.

I think my mom envy started long before I was even a mother–well, because I wasn’t a mother. I’ve wanted to be a mom for as long as I can remember. And all of a sudden it felt like everyone around me was getting pregnant. I was 26, married for a few years, financially stable, so the questions started. And they are meant to be innocent questions, but I know from my experience and from experiences others have shared with me about their journeys in infertility and miscarriage that those questions are anything but innocent. The intent behind may be, but they hurt. A lot. And looking back, I know I was one of those people “innocently” joking with a young married couple about when they would have kids. I hate myself for that. And I am sorry. For about a year before we started trying to have a baby, I was miserable because I wasn’t a mom. And because Satan likes to be a jerk and kick us while we are down, I was flooded daily with reminders that I was, in fact, NOT a mom. Students, coworkers, acquaintances would ask me “why” I didn’t have a baby yet or when I was going to “get on it.” My favorite would be “Well ______ just had a baby so it’s your turn now.” It wasn’t our time yet. We were still wading through the waters of grief from losing Alex’s sister to cancer. We were waiting to be more prepared financially. We were waiting for my health to improve so I could have the healthiest pregnancy possible (oh the irony). But it still hurt my heart every day that I wasn’t a mom. I can vividly remember about a dozen instances when I was told that I could never understand (fill in the blank) because “you’re not a mother.” And sure, that may have been true, but what a jerk thing to say to someone especially when you don’t know their situation. I recently saw an article or blog or something on Facebook titled something along the lines of “Everyone you meet is grieving.” That is such an important truth to remember. You just don’t know the hurt going on in a person’s heart. And to say things, even if they may be somewhat true, to a person like “you’re not a mother” or “why don’t you have kids?” is just sad. I have so many friends who have been through Hell with infertility, miscarriage, and infant loss. It’s tragic to a woman when she desperately wants to be what she feels in her heart she was made to be, and for whatever reason, she can’t. **I want to clarify that I do not in anyway think that if you have had a miscarriage or lost a child that you are any less of a mother. You had a child. It doesn’t matter how long he/she was able to stay. You are a mom. You will always be a mom.** Also, maybe I am still a little salty over this one.

In pregnancy I think I was too overwhelmed to really experience mom envy too much. Maybe I was jealous of people who didn’t throw up all the time. Or people who could be pregnant and still function as a responsible human. I think I was just miserable and gross, so I didn’t have the energy to have much mom envy. Maybe that’s the trick…? If I get even less sleep, I’ll be too tired to think or care? Sounds like it could work. Definitely not willing to try it though.

Two days old. Holding him for the first time. I look gross because I was crying.

The NICU brought a lot of comparison for me. Birth brought a lot of comparison for me. In some ways, I feel like I missed out on something because I had a somewhat scheduled C-section and never experienced true active labor, or my water breaking, or birthing a human. From what I hear, I didn’t miss much. I wrote in a previous post about missing out on that first moment of seeing your baby, falling in love, and immediately getting to snuggle or kiss him. Today I read a birth story from another mom who had the sweetest moment with her son. I read it, and I was so happy for her. But it also made me remember that I didn’t get that, and there’s no take backs. (Fun fact, it is possible to be happy for others and sad for yourself at the same time.) Obviously, Evan’s health and well-being trumped any kind of expectation of that moment, but I still miss it. I didn’t even hold him until two days later, and it was with help and a lot of finagling of cords and tubes, and it didn’t last long as it ended in Evan not breathing. There were things I took for granted in my mind when I was pregnant. We aren’t guaranteed anything. I had even come to terms before delivery that I wasn’t guaranteed my baby would live. But I still took for granted what it would mean to hold my son or even touch him or kiss him. I didn’t kiss him for the first time until he was two weeks old I think. And after that, I didn’t kiss him often at all. Not because I wasn’t connected with him or because I didn’t love him, but because I loved him so much I was afraid to do anything to harm him. It wasn’t until recently that I truly got comfortable giving him all the kisses like “regular” mamas do. These little things that I didn’t even think about before he was born became the biggest things.

Maybe this post should really be more about the things I took for granted that led to my mom envy. I think a lot of that jealously stems from other moms getting to do things I took for granted in my mind or expected before Evan was born. So organization be darned, I am going to continue this post in list format. The English teacher in me wants to throw up all over this post.

Checking on my newborn in the middle of the night. For me, that meant calling the NICU to talk to his night nurse instead of looking at a baby monitor or popping my head in the bassinet to look at him. I couldn’t see him. He was 40 minutes and 14 floors away. I hated the feeling that I still wasn’t completely a mom. I mean, I was only doing it part-time in so many ways. At least, that’s the lie I would tell myself.

Holding my child. I’ve talked about this before, and I am sure if you know a NICU family or you are one you get it. Holding Evan was sometimes not possible. I would have to put him back because he wasn’t breathing, or he had difficult equipment at the time, or he just couldn’t tolerate being touched that day. It was heartbreaking. I now find myself sometimes whining about how my back or arms hurt because he has days where he won’t let me put him down, but then I have to remind myself how much of a gift that is. How for so many months I dreamed of holding him as much as I wanted. I would see pictures of other moms toting their babies around wherever they went in wraps and carriers, and I was jealous. When we got home, as tired as I was, I loved (and kind of miss sometimes) the nights where Evan would only sleep if he was being held. He needed ME. So my arms could hurt, my back could hurt, my brain could become mush from being so sleep deprived. My son needed me to hold him, and I could finally do it.

Nursing. My shortest lived mom envy. Didn’t do it. Couldn’t do it. Felt really guilty and like a failure for it for a while. Realized that was dumb, and it didn’t matter how my baby was fed or what he was fed. Props to all the moms out there who can nurse their babies or pump for their babies and it goes well. That’s great. But it’s also great to be physically and emotionally healthy for your child and for your child to get the nutrition he needs, and sometimes those things can’t happen if you try to nurse or pump for your kid. I feel like we are bombarded mostly due to social media these days with the message that if you don’t breastfeed, you are not a good mom or giving your child what’s best for him. That is a LIE. And to the moms out there struggling with this…guess what? IT’S OKAY. You do what you need to do for you and your babe to be happy and healthy. And don’t you dare feel an ounce of guilt over it.

Sleep deprived people should not be trusted with open containers of liquid. They just shouldn’t.

Feeding my child. Evan doesn’t eat anything by mouth. He’s never filled his little belly from a bottle. He has tried it. He has swallowed 5mLs on his best day (that’s roughly a teaspoon). And that takes a lot of time and hard work on his part. Evan is nine and a half months old, and he just started tasting baby foods to see how he would handle it. He does not actually “eat” enough to be any kind of substantial nutrition. He may swallow a tiny bit, but the experience is more about engaging his oral skills and him coordinating those skills to learn to eat the food. It’s also about tolerating a spoon in his mouth. It’s also about tolerating something other than spit in his mouth, and let’s be honest, he doesn’t even tolerate that sometimes. The feeding pump and his G-tube are lifesavers…literally. Evan would die without them. But it’s hard sometimes when I see other kiddos trying foods or eating and becoming covered in something. I remember telling our speech therapist that I was sad that it felt like we would miss out on the cute pictures of our baby covered in food from trying to feed himself or smearing the food on his face from thrashing away from the spoon. The day he tasted something for the first time was magical. The day I got to go into Target with BABY FOOD on my shopping list was magical. I knew that 98% of it would end up in the trash because Evan wasn’t really eating-eating it, but I got to buy baby food! I think the feeding stuff is actually making me more grateful than envious because every little thing about it feels like winning the lottery. Also–tube feeding has made our lives easier in a lot of ways. Evan is on about a hundred medications it feels like, so not having to make him take them all by mouth is kind of awesome. I can give him meds while he’s sleeping. He can eat while he’s sleeping. In fact, he’s eating right now, and he will keep eating until 6AM. I think any envy that comes out of this topic comes more when someone who doesn’t know or understand Evan’s feeding journey makes a comment about his eating that would only make sense if his feeding journey was that of a typical nine month old. It’s completely different. It will be for a long time, maybe forever. And that’s okay. But I can hate little things about it. I am a human after all. I hate the beeping the pump will do for seemingly no reason at times. I hate that there have been nights where Evan’s bed ate more than he did because something popped open that shouldn’t have. I hate that parts of my house have a lingering Nutramigen (his formula) stink from all the times I have spilled it when pouring it into the bag. I hate that stomach contents have exploded into my face when venting his tube. I hate that he is really good at popping it open when not in use and leaking stomach juices all over the place. I hate that a feed involves cleaning the bag, measuring the formula, pouring it into the bag, priming the line, programming the pump, and that’s all after making sure Evan’s G-tube has been adequately vented and his extension set is also cleaned and primed. It’s tedious. So easy…but tedious. And not super convenient on the go. I’ve started scheduling his doctor’s appointments so I can avoid having to feed him while out. Fewer accessories makes for easier travel. So sure, I hate a lot of things about it, but I owe his life to it, and if I’m being honest, a lot of the things I hate I also laugh at.

Peaches: not a fan. This particular spoon: not a fan.

Picking my baby up in the middle of the night when he’s fussing. When I do this, I am also making sure I am not stepping on or tangling cords and tubes. There have been nights where I have cried thinking about how I can’t just pick him up without first thinking of these cords or carry him into another room. In fact, there are rooms in our house he can’t reach unless he is put on a portable oxygen tank and disconnected from his pulse ox. The feeding pump could wheel along next to us on his pole. I am jealous at times of the moms who can do this without a second thought. I cannot wait for a day when we are tube and cord free. Heck, I would settle for just one fewer tube (oxygen, I’m lookin’ at you).

Isolation or not expecting isolation. This is where the majority of my mom envy probably lies. At least lately. I am getting a little stir crazy. If I am out by myself at Target or the grocery store, I often see moms and their littles. Sometimes tiny babies like Evan. And all I can think about are the thousands of germs that baby is getting exposed to. But then I remember that not all babies are immunocompromised like a preemie and kind of a wimp like Evan. I am jealous of people who can go to a coffee shop to meet a friend with their baby in tow. I am jealous of people who don’t have to carefully consider if the person they are seeing is sick, has been sick, or has been near anyone who has been sick and then sacrifice a social engagement if so. I am jealous of people who feel comfortable letting other people come into their house without making sure vaccinations are up to date and that person hasn’t had so much as a sniffle in at least two weeks. I am jealous of people who are comfortable with and excited for other people to touch and hold their child. I know I’ll get there eventually, but the NICU and five more hospital admissions have done a number on us. I don’t want to live in constant fear of Evan getting sick. But I’ve seen what a tiny cold can do to him. I know what something like RSV or the flu could do to him. And how do I cope with watching my tiny baby who physically can’t throw up dry heaving because he has a stomach bug and can’t get relief? I will talk more about isolation in my next post though, as I feel it is so important for people to truly understand. So I will stop here for tonight.

Milestones. I know Evan runs on Evan’s time, and I am so proud of the progress he is making. He is getting closer to being able to hold his head up every day now after months of little to no progress. So my “envy” here isn’t really about him not meeting the milestones he “should” be, but more about what I think other people think of us because he hasn’t. I worry all the time that people see that he can’t do a lot of things yet and wonder what we are doing wrong. I think about the unsolicited advice we get about him from people who know nothing about hypotonia or physical therapy for a preemie. So really my only worry here is that other moms, dads, random strangers even, think I am a bad mom because my kid can’t do at nine and a half months what most babies can do at two or three months. I guess I could even lump the helmet into this. We get comments from people about it being good that he was wearing his helmet because “you’re running out of time to fix his flat head” when they see him in it in a picture, but what they don’t see was him screaming like he was being tortured the whole time he was wearing it or the massive breakout of eczema and staph all over his head and face that followed. Like no, we are not just lazy. We do not have him lay on the ground all day letting his head get flatter and flatter. We do so much physical therapy work with him every single day to get him to turn his head the other way or maneuver him to put pressure on the other side of his head. And maybe this is all my own ridiculous insecurity. But I feel like I would judge me at least a little if I didn’t know our full story, so my guess is other people are too. Or maybe I am just more sinful than the people around me…likely.

I am sure I could find more ways that I have experienced “mom envy” in our parenting journey so far, but I have already written a tragically grammatically flawed and disorganized novel about my feelings, and I need to go to bed.

To my fellow mamas– if you leave this post with nothing else know this: you are who you are supposed to be for your child. You were handpicked by God to be his/her parent. Your child needs YOU. Not the mom down the street who “has it all together” (spoiler alert: she doesn’t). Not your mom or your mother-in-law. Not your best friend. Not the girl from high school who you still follow on Instagram whose kids are “perfect.” Not the know-it-all old lady in the Kroger parking lot. You kid needs YOU. Our parenting journeys all look different, and when we forget that it’s okay and good that they look different, it is so easy for that nasty envy to creep in. This is something I have to remind myself of daily, and I am lucky enough to have friends and a husband who help me keep that in check.

Thank you for reading along with our story. Thank you for being “in it” with us as we navigate these waters. Thank you to those who have prayed for us and for Evan throughout this journey.

Also–remember, you’re not supposed to feel sorry for us. So stop it if you are.

I mean…come on. He’s basically hugging me. Nothin’ to be sorry about here!

Please don’t forget to send me an email through the contact page if you have questions. If you’re worried your question might offend me, I promise it won’t! I threw it out there, so I am happy to answer anything I can for you all! I’ve gotten some questions already that I am excited to answer and some post topic requests as well!

A Glimpse at Our Comedic Life

I think this blog can be kind of heavy, and with some of the posts I have on my heart for the near future, it will continue to be so. However, I really want to stress that we do find so much humor in our parenting journey. Yes, it is definitely (more like obviously) not all sunshine and rainbows, but there is so much good and so much laughter. Sometimes that laughter comes a little after the fact when theres time to step back from a bad day or moment, but it’s there. This past Friday was one such day.

I’ve shared in a previous post how isolation for cold/flu season has been wearing me down a bit lately. Though I know at my core I am an introvert, after several months of such limited contact when I used to be surrounded by hundreds of students (former high school teacher here if you’re new) and then dozens of nurses and doctors, I am ready for this isolation to be over. And, of course, I say that now, but when the time comes, I will probably cower in the house in fear of germs or overstimulation for poor Evan. He really struggles with that one.

But anyway, the point is, outings lately, even if they are just to the doctor, have been kind of wonderful (which is great considering we have about a thousand appointments coming this week). It gets us out of the monotony of days spent at home where I have one sided conversations with a nine month old who sometimes is a little rude and yells when I am talking to him nicely or poops on me. So last week, I was so excited to have two days where appointments took us out of the house! I even added a quick trip to the Starbucks drive thru a different day because Mama always needs more coffee.

Friday was our bigger appointment of the week: a nine month check up and his next dose of synagis, a special vaccine for high risk babies like Evan to help protect them from RSV. The shot is a MAMMOTH of a shot. It’s thick, and it’s about 2mLs of liquid….so not fun at all. But this is our fifth dose, so we have the routine down: the shot happens, Evan squeals and screams, I snuggle him and play “Baby Shark”, and within five minutes he’s back to normal like nothing ever happened. I think I have become completely immune to the “sad mama” reaction to shots and needles for my guy which sometimes makes me feel like a terrible mom but in other ways makes me feel like I am kicking a** at this whole motherhood thing.

The plan was leave early to swing by the prosthetics office to return Evan’s old helmet he was allergic to, pop down the street to the pediatrician, then finish off the outing with a little coffee reward for myself for another successful doctor’s appointment. Then we would watch a Harry Potter marathon on the SyFy channel for the rest of the afternoon while we played and did some PT work. Easy peasy!

Well, not so much. I started my day sleeping through my alarm to get Evan’s morning feed started (this happens almost every day, so no big deal). I get to his crib; we exchange pleasantries, and then I go to get everything going for our day. Except…only one of us chose to be pleasant past that initial “good morning.” I have said before that Evan doesn’t really cry much. He will fuss, yell, and angry thrash, but he only cries when he is in pain or feels really crummy. We had real tears this morning….and we hadn’t even gotten a shot yet. Woooo. What a great start. You know those days that you just know in your gut are going to suck even before they’ve started? Yup. This was one of them.

He finally chilled out enough for me to not feel horrible about taking a fast shower so that I didn’t look like a human piece of garbage at the pediatrician’s office— if we had been scheduled with our doctor that day, I probably wouldn’t have bothered. But, she wasn’t in the office that day, so I figured I would try to look like a person. I had gotten the diaper bag checked off like I always do before trips out to make sure I had all the essentials which includes checking the level on our oxygen tank. Everything looked good to go. The tank was not all the way full, but what I saw showed at least three hours worth of O’s for Evan.

We headed out in the rain (in case you haven’t been around Virginia lately, its basically underwater). I looked at the clock in my car: we would be early! This NEVER happens. I pulled into the prosthetics office and called the reception desk to see if they could just run out and grab it so I wouldn’t have to do the complicated dance of getting Evan in and out of the car for a 1 second task. They happily obliged my request which was so nice and helpful. Then we rolled down the street, parked in a prime handicap spot (don’t worry, Evan has a tag; we didn’t break the law), and got out and into the building. Things were going GREAT! We were a full ten minutes early.

I like that it uses the wording “not yet” rather than “no.” I will give it that.

We rolled into the office adjacent to our doctor’s (its a big practice so they have three offices on one floor for efficiency). I walked up to the receptionist and checked in. We had never met her before. She said “Okay, you’re here for a well-check, there is some paperwork for this one.” I knew what she was about to hand me. I had prepared my complex kiddo mama heart for it, and decided to just fill it out and laugh later. Had the receptionist known us and Evan, she never would have handed it to me. If you have kids, you know the paperwork I am talking about: the nine month development check list. I quickly read through it and filled it out….we answered “not yet” to every single question. There was also a question about listing all health concerns the child has had in the past few months. I just put the highlights because I figured it’s all in his chart, what’s the point?

“Does anything about your baby worry you?” I’m not going to lie, I actually snorted with laughter in the waiting room when I read that one. Part of me really wanted to write, “Okay, so how much time do you have? Because this might take a while.” Also, I don’t know any mom out there who isn’t worried about at least 10 things going on with their babies at all times. It’s not healthy, but we all do it. What a silly question.

I knew the checklist was coming. I knew it would be mistakenly handed to us. I knew it didn’t matter for Evan. I knew he was making his own amazing progress lately. I knew that Evan ran on Evan’s time and no one else’s. But–seeing three pages of “not yet’s” kind of let it sink in just how “behind” he was. There were even milestones for 2-6 months old that I would have had to answer “not yet” to if they had been on the questionnaire. I texted a fellow NICU mama from the waiting room to vent about the checklist and remind myself that I wasn’t alone in this feeling. Gosh, does that help. I don’t know about you, but hearing the words “me too” in any hard situation can bring so much comfort. We’re not made to do this life alone. In that moment, I decided that I would truly not care about it. I didn’t even finish the last page, and I let our care coordinator use the first page to write something down and take with her. I laughed with her that the answer to everything was “no” so it’s not like anyone needed to actually read it. She reminded me that it was given to us by mistake for sure and not to worry about it or think anything of it. She said, “Evan does what he wants when he wants.” Boy, is that true. In that current moment, what he wanted was to chew on his nasal cannula; it was in his mouth.

Despite being so early, the office was busy and running a bit behind. No worries for us, we love to be out! However….things started to get a little stinky, and knowing Evan there was a giant lava poo waiting for me in his diaper. I was really hoping we’d get called back soon. Then I noticed his blood oxygen was a little low on his monitor, so I checked to make sure the cannula was in his nose and then checked the level on my tank. Surprise. The gauge was reading in the red. We were running out. I did the math in my head and I knew we would barely make it through the appointment on the tank if we even made it that far. Good job, Mom. The most important thing on an outing is breathing, and you just really dropped the ball there. I told the receptionist our situation, and they got us back into an exam room within a couple minutes. The nurse brought in another oxygen tank, so Evan could run on theirs until we left. Crisis averted, but I was so embarrassed. Once again, where is my “Mom of the Year” trophy?

They apologized for giving me the form a second time (and really, I am not mad at the office, nor was I ever truly mad at anyone for handing it to me. It was an honest mistake, and they were so nice about it.) We got Evan measured and weighed, and they gave him a new board book to take home! How sweet! I love our doctor’s offices. The nurse was so nice as I continuously tried to assure her that I have NEVER left the house without enough oxygen before. She laughed with me and said, “Girl, you have so much on your mind with this little guy, it’s alright!” I made sure she knew we had a back up tank in the car that was full. I could switch it out as soon as I got him in the car, and we would be fine heading home.

If you read my last post about Evan’s MRSA, you may laugh with me here. She looked at Evan as I wiped his eye clean and said, “So how long as his eye been draining like that?” I laughed out loud and told her “his whole life. Just ignore it. It’s getting fixed in a few weeks.” Then I told her about the blog post I had just written. She went to prepare Evan’s horrible shot while the doc came in to look him over. She gave him the all clear for surgery in a few weeks and said he looked great for all he has going on. She also apologized again for them giving us that form. They wouldn’t have handed it to us if the receptionist had known Evan. It was really all just because we were in the different office that day. I told her it was really okay but that I appreciated how kind everyone was about it. She said as soon as Evan got his shot, we could check out.

Fat boy over here finally hit the 1st percentile for weight! We’ve been below it his whole life! Huge day for big man Evan!

Our sweet nurse came back with that dreaded syringe of necessary magic, and Evan responded just as expected. A high pitch squeal and scream then some super dramatic crying. I got his sleeper snapped up and scooped him up for a good snuggle and we danced around the room to “Baby Shark.” But he was still crying. After three rounds of the song and lots of cuddling, I gave up and decided he would likely just calm down and fall asleep once we got in the car. Oh, I should mention that in the process of this visit another mom fail was brought to my attention. I not only left the house with an almost empty tank (because sleep deprivation apparently makes you incapable of reading numbers), but I also forgot to plug his pulse ox in the night before so its battery was dying. Still waiting on that trophy. So if I hadn’t had the back up tank, I would have been rolling home, in the rain no less, on a quickly emptying tank with no way to monitor Evan’s O2. I looked at the nurse when I realized all of this out loud and told her she could just go ahead and call CPS on me now because clearly I was an unfit parent. We laughed together and she reassured me that I was doing a good job.

Evan continued to scream like he was being tortured as I got him in the car and on the fresh tank. Did I mention it was raining? Yeah. I was soaked from all of this dog and pony show I had going on just to get ready to drive home. I always wonder what strangers think as they watch me maneuver all of Evan’s equipment and such when we get in and out of the car. If you’ve witnessed it, it’s kind of a ridiculous mess of semi-organized chaos. I’m sure it looks funny from an outsider’s perspective. We headed out and I realized that the dying pulse ox machine was just giving me bogus readings that made no sense so it was going to beep our entire way home. No thank you. I turned it off because lucky for me “crying is breathing” is a mantra we live by in the Norton house, and Evan was just reassuring me the whole way home that he, in fact, was breathing just fine.

It was only 12:30, and it had already been such a long day. I was feeling like an epic failure as a parent, and I just needed a little pick me up. I am sure I’m not the first mom to roll through the Starbucks drive through with a screaming baby in the backseat, if that’s been you, you are my people. I got the largest size latte you can get with extra espresso because if I was going to make it to 5 o’clock when Alex got home, I was going to need it.

His shirt says, “Dumbledore’s Army.”

We got back into the house with minimal clumsiness and Evan finally calmed down twenty minutes later. He has never cried that long from shots in his life…and this kid has seen more needles than most. Heck, one time they drew his blood and he didn’t even flinch. I got all of his things situated for the afternoon (meds drawn up, feeding pump cleaned and refilled, diaper changed, new outfit (we leaked some stomach contents when we pulled our G-tube open)), and we settled in for a good long snuggle with some Harry Potter on the TV. The day had definitely turned around. Partly thanks to some Tylenol and gabapentin, but who’s keeping score? I like to think it was my magical mama soothing powers. Lol. Just kidding. I don’t have those.

He was sucking on it like it was a pacifier. What a little weirdo.

I think I forgot to mention we (which always really just means I) got little to no sleep the night before. After spending most of the afternoon fighting the nasal vs oral cannula battle with Evan, by 6 o’clock I was falling asleep on the couch. As I told Alex all about our day and how much of a disaster it was I really couldn’t help but laugh. These crazy, messy days can be so hard, but honestly, they sometimes bring me the most joy. Because in them (well, usually after them) I can see the humor and comedy that is our life. We could seriously have a reality show. I feel like just my embarrassing mom dancing could get us great ratings all on its own. Or maybe the way I think that explaining the function of a nasal cannula to a nine month old might actually change how he feels about it being on his face.

Alex pampered me that night. He cooked a delicious dinner and let me go to bed before the baby and took all of the night duties so I could sleep through until the morning. Granted I apparently woke up and claimed I could take the baby at one point when I couldn’t even open my eyes. Oh, sleep, you beautiful friend, how I love you and miss you always.

But that’s it. There’s a glimpse into our ridiculous life. Please do not leave this post feeling sorry for us or heartbroken or whatever other mushy feelings you may have been prompted to feel. We really do find so much humor in our adventures in this “unconventional” parenting. Laugh with us. Be joyful with us.

DON’T FORGET!

Email me your questions about Evan through the contact feature on the home page of the blog! I will try to answer all of them in a Q&A post late in the week! No question is too small. I throw so much out there in these posts that I know I am bound to fail to explain things clearly at times. I want to help the world understand our boy and how awesome he is, so help me do that by letting me know what you want to know about him (or even us as a family). If using the contact feature isn’t your jam and we’re friends on Instagram or Facebook, you can shoot me a private message there too.

Hello, MRSA, My Old Friend…

First, can we all just take a moment to marvel at how kind and sweet of a mother I am to post such a glamorous picture of Evan for the feature image of this blog post?

If you’re one of Evan’s NICU nurses, you may have been anxiously awaiting this post since I started the blog. MRSA, our constant companion, gets its own post as it has been our longest fought battle outside of breathing and eating which I guess are important too, but clearly not important enough for their own posts. Just kidding. We love that Evan can breathe and eat even if it’s with help from machines and pumps.

On our second week in the NICU, we came in one morning to find a cart in front of Evan’s care space. I remember thinking for a moment that this was super annoying to have a cart parked in his care space when there was plenty of other open space in the pod. But then his nurse came over and explained that the cart was there because Evan was on isolation for MRSA. They explained that the babies get their noses swabbed every Sunday night to test for MRSA to try to limit infection risks on the floor. Evan would need two weeks of negative swabs in a row to get off of isolation.

Isolation means that every staff member who enters his care space has to first suit up in these super attractive yellow gowns.

So there began the weekly saga of Monday morning cart checks as we entered the pod. Evan usually tested positive every week, but some random weeks we would get a negative just to get a positive again. He just couldn’t kick it! That’s probably because that lovely MRSA decided to make a cozy little home in the tear duct of his right eye.

Eye ointment to try and get rid of the MRSA.
Goodbye and good riddance!

But one day it finally happened! And I was oh so glad to have Martha as our nurse that day. She knew the weekly struggle it was to see that darn cart in front of the care space. I remember she had to bully the doctor into actually pulling him off isolation because they were so skeptical of his eyeball; they wanted to just keep him on isolation until he left! I mean, I don’t really blame them. He’s ridiculous and can’t be trusted. But she finally got them to agree to pull him off since he had two weeks of negative swabs! We did a little happy dance, and she rolled his cart away! No more ugly yellow gowns!

The very next week we were back on isolation until we left the NICU for good. Can’t win them all, I guess. But hey, that was a whole week of no isolation. Victories are victories.

Sad crusty eyeball. And a 60mL syringe because who doesn’t have those to snuggle with?

If you’ve followed our story and seen a lot of pictures of Evan, you’ve probably noticed that half the time he looks like he got in a fight or he had some incident with radioactive waste. That’s the MRSA eyeball I’ve been talking about. We love him, MRSA and all. He has been on more rounds of antibiotics and eye drops for this than I can count, and now he is FINALLY old enough to get the surgery needed to unclog and open up his tear duct. Praise Jesus! The goopy eye will not be missed!

“You should see the other baby.”

We have had to spend so much time “milking” the goo out of his eye which is just as gross as it sounds, just ask our nurse, Amber. When it’s really bad we go through about a dozen washcloths a day doing warm compresses to keep it clean. There was even one day in the NICU that our nurse had to just tape the warm compress to his face because he wouldn’t stop thrashing. Evan loves the angry thrash; its his signature move. I laughed so hard that day.

For a while it was rare to see both of Evan’s eyes open at the same time because his right eye would be uncomfortable or crusted shut or both. So this side eye glare he’s giving me here doesn’t bother me. Maybe when he’s older it will.

We were kind of hoping Evan’s eye would stay clear after we left the NICU since he wouldn’t be in a hospital anymore. Nope. No such luck. We got a new kind of eye drops and started another round of antibiotics very shortly after leaving. Since then I think we have been on antibiotics on average once a month to keep his eye from getting too bad. When it gets really bad he gets skin breakdown around it, and since it cultures as MRSA every time, that can be dangerous as we don’t want staph to spread.

We have been put on isolation for it as well on our PEDS floor stays too. That I don’t mind as much because I am terrified of all the other kids’ germs (NICU babies don’t really have germs). I think I actually asked to be on isolation last time we were there. I just started shouting, “He has MRSA!” hoping someone would do it. Our life is pure comedy. It really is.

I think he’s just gotten used to it. Poor guy!

I cannot wait for March 8. That is the day of his surgery. Getting this eye fixed will be so much more comfortable for him and lessen his risk of staph when his eczema flares on his face. I also can’t wait to never have to respond to this phrase from a new doctor again, “So tell me about this drainage around his eye.” They will probably be glad too because my response is usually quite flippant. “Oh that’s just his MRSA eyeball. It’s fine.” And we won’t have to joke with the nurses and docs who know him well by just tilting our heads and saying, “So the eye…”

When your MRSA likes to party with the rest of your face…
Also, what a beefcake. He’s so buff.

I laugh at myself remembering how I got freaked out by them telling us he swabbed positive for MRSA (because it’s so common in case you didn’t know!) since I now make at least 10 jokes about his MRSA eye a day. Even when he is between flare ups, I still call it his MRSA eye. But in just two short weeks, it will be a MRSA eye no more!

Feel free to laugh at my anxiety over his surgery once were actually closer to it. It’s a necessary evil and I am so excited to finally get it done, but it is still scary for this mama!

ANNOUNCEMENT FOR NEXT WEEK!

Now for something fun and hopefully informative! Next week, I would love to do a post where I answer YOUR questions about Evan, our life, etc. You can use the contact feature on this webpage to send me an email with your questions. I know I have tried to give all the details of Evan’s journey, but I am certain there are things I have missed or not explained well enough. Please don’t be shy with your questions! I started this blog as a way to educate and encourage so I want to do just that! If your question is broad you can always pose it as a suggested post topic! I would love that!

Hernias and Houses

We made it to Evan’s surgery date without any more illnesses. Hallelujah! We also found a house that would work for us in Roanoke only 15 minutes from the hospital and all of Evan’s doctors. Also Alex got a new job! October was a big month for the Nortons to say the least.

We were set to move the weekend after Evan’s hernia surgery. We had to wait to put our house on the market until we had moved out because showing a house doesn’t really work when your kid is on isolation. We decided it was in our best interest to rent a house for a year and then buy when we had more time to look.

Soaking up my precious boy.

I had been pretty calm about Evan’s surgery up until the night before. I didn’t want to put him down the whole night, but for practicality Alex and I took turns sleeping. It’s a surreal thing to hold your child on more occasions than you can count wondering if that will be the last time. Some of those times were rational fears, others not. But either way, it is terrifying and humbling. Parenthood is just that: terrifying and humbling. When you allow yourself to love this big, you are vulnerable to all kinds of pain and sorrow. It’s scary. And knowing that you can’t protect your child from everything in this world is the most humbling thing. We are not enough for our children. We were never meant to be enough for them. But we will hold them and love them and then maybe hold them a little tighter. So I held my Evan that night. I breathed him in. I stroked his little wispy hairs. I watched his chest rise and fall with each breath. I kissed his chubby cheeks.

“Mom, I think this gown is a little big.”

We left for the hospital shortly after 4AM the next morning. They got Evan all ready to go in the pre-op area and wheeled him back. He was so sweet and content. He had no idea what was happening. They took us to the parent waiting room and told us it would be a couple hours. We would meet Evan back up in the PICU afterwards so he could be monitored and get pain management for a few days. Evan’s surgeon came to meet with us in the waiting room when they finished. It went well, but she did need to call in another surgeon for assistance since Evan’s internal anatomy was so small relative to other babies his size. They told us the anesthesiologist would talk to us when we met him up in the PICU. Evan’s palliative care doctor walked up with us so she could hear from the surgical team as well and see if we needed anything. There are no words to explain how important she has been to us through all of Evan’s care.

This is the saddest picture I think I have ever taken. He gripped the bar of the crib for over an hour while screaming in pain.

Intubation and sedation was still a little wonky, but she told us that he was handling it better than he had in the past. Progress! They didn’t even have to keep him intubated this time. He was able to extubate in the OR and was breathing on his normal flow rate with his cannula. When we saw him, he was still pretty sedated, but he was starting to come around. His little cry was so pitiful. I remember being scared to change his diapers again since that’s exactly where his incisions were this time. We did our best to keep him comfortable, but as time went on that night he was clearly in more and more pain. I hated it. It was horrible. That night, he cried the whole night with only short breaks when meds would peak. We maxed him out on fentanyl, and he still was screaming through it. We ended up having to ween him back down from it because even though it was not touching his pain, it was hurting his respiratory drive. They ended up switching him to tramadol and IV Tylenol (it works better than oral for Evan) in alternating doses, and it seemed to be working. That’s the saddest thing about being a NICU baby with a complex medical history, but five months old, you have a tolerance to narcotics.

Sweet baby boy.
Why are you so cute?

Keeping Evan comfortable was our main goal over the next couple days. We were careful about his positioning, his feeds, the level of light and sound in the room, etc. We had some amazing nurses caring for him (and us) throughout that really made a huge difference. The PICU was new for us, so we were learning to trust new people with our sweet baby. They made it easy.

Evan turned five months old the day of his surgery, but we took his picture a few days late.

Our last night we were stable enough to move out to the regular pediatric floor (with two of our favorite nurses, Joey and Loganne), but since they were so full, we were in a shared room. Not ideal. The chances of us actually getting a roommate though were really low because it had to be a child under two who tested negative for RSV and the flu. Since at this time of year illness is the leading cause of babies and toddlers being admitted, we were pretty sure we wouldn’t get a roommate. Within two hours, we got a roommate. It was a wild child who screamed pretty much the entire time. Alex and I even discussed signing out AMA with Evan if things didn’t improve. This wasn’t a restful environment for him to heal. Alex booked a room in the hotel across the street so he would be able to get back to the hospital quickly if that’s what we needed to do.

We can learn from you, Evan. You always find joy where you are.

Things did get better, and I am glad we didn’t check out. We needed to talk to the physical therapist who is special needs car seat certified to figure out what to do when Evan got too big for the car bed he was using at the time. We were thinking we would have to find the car seat on the market that reclined the most and buy it. Little did we know, there was a car bed made for bigger babies! Melinda researched it right there with us at the bedside, did a quick assessment of Evan, and wrote the request for it from the company. The paperwork and all takes a while, so it was important that we got things moving quickly. Not only did we get our car seat problem solved that morning, but we got to talk with Melinda about Jesus and gosh, how we needed that. On our ride home that morning (our LAST 40 minute ride to or from the hospital!), Alex said how much of a “God thing” it was that we stayed that night and waited to see PT until that morning. He said we needed that conversation with Melinda. That’s the thing: God shows up, but we have to have our eyes open to see Him. We could have easily focused on the stress of that last night and how tired we were and how Alex had to spend the first half of his birthday (yup, it was his birthday) in the hospital with his baby. But on that ride home we were nothing but grateful (and maybe a little tired).

Hanging out on the couch with Dad one last time in his first (but more like second) home!

Evan recovered so quickly once we got home. Within four days, we didn’t need to give him Tylenol at all. Now it was time to move. We hadn’t actually packed anything at this point because baby and hospital and baby some more, oh and tired. We lined up Evan’s primary nurse from the NICU to meet us at the new house so she could stay with Evan for a couple hours while we went back to the old house to pack and load our cars. Moving was a multi-day, multi-person effort, but we finally got (almost) everything moved by the end if the next week. Alex was also on a two week break between jobs, so we got to have him home while we settled into the new house.

Moving day nap
Home sweet home!

Living so close to Evan’s doctors was such a game changer for me. I didn’t need to have someone with me for his appointments anymore. I could confidently drive him to and from with very little stress. It was, I am sure, very comical for onlookers to witness me lugging Evan and all his accessories (including a giant EMS backpack that has become his diaper bag) in and out of places, but we were doing it!

Evan also got to celebrate his first Halloween that month! He, of course, was Harry Potter also known as “the boy who lived.” Quite fitting if you ask me.

Yes, those are baby UGG boots.

Life seemed to be settling down for us which was so nice after such a crazy month. Surgery, new house, new job. It was a lot. Alex loves the new job, by the way! It was such a blessing for us even if it came during such a busy season of life.

In November, we stayed home the entire month! We had such a great month. Our biggest issues were eczema, cradle cap, and a baby who didn’t sleep at night. NORMAL BABY THINGS. You have no idea how awesome it is to be worried about or struggle through normal baby stuff with Evan. It’s kind of amazing actually. Blow out diapers, peeing during his bath, fussing for snuggles, the dreaded witching hour…they are really all just blessings. They are signs that our atypical baby is doing alright. They are reminders that there is hope for him and his future. Thank you, Jesus, for that.

I love you.

Tomorrow will be my favorite post so far. For those of you who have followed me on Instagram or Facebook, you know what’s coming: Advent with Evan! Get ready for lots of pictures!

Great Fear, Greater God

Four Days. That’s how long we made it this time. Four measly days. I couldn’t manage to make it through one work week without having to take Evan to the ER. Where’s my Mom-of-the-Year trophy?

Starting our day as any other…
(Also, yikes, I look as tired as I probably felt.)

This time we went to the ER closest to our house and waited on the pediatric transport team to come get him and take him to Roanoke. I looked at Alex, “We need to move. We need to move now.” Evan wasn’t breathing well again, and his Owlet sock had alarmed a bunch of times that day. I knew the drill this time. I packed everything we would need, and we headed out. Alex followed the ambulance to Roanoke and met us up in Evan’s room.

First ambulance ride…oh, the milestones we keep.

He had a little crib waiting in there for him. I could have cried. There are two kinds of cribs up in PEDS. The little ones like they have in the NICU and these big clunky things for more like toddlers. They saw Evan’s name as the incoming patient and remembered that we preferred the little crib. (We love you, Andie.) When you are spending most of your days with your kid in the hospital, these simple gestures mean everything.

Handsome boy.

This time was much better. We knew how the PEDS floor worked; we had met nurses we loved; we knew the residents and attendings. And even better…they knew us. The nurses knew that Evan kept to a strict feeding and medication schedule. They knew that he needed as little stimulation as possible. And they did everything in their power to adhere to these needs. They were incredible.

Paci time with Daddy

Evan’s chest X-ray didn’t look good, but he didn’t have a fever, so it was hard to definitively diagnose pneumonia, but since his oxygen requirements were high, they went ahead and treated for pneumonia. We also got a pulmonology consult this time since it didn’t seem like Evan was going to be able to ween off the oxygen. We discussed home oxygen and monitoring, and the pulmonologist and pediatric attending (who became our regular pediatrician after this admission) agreed that it was necessary to keep Evan safe and out of the hospital. In the meantime, we did something called a pneumogram study that tracks the details of Evan’s breathing over a period of 12-18 hours. It required some charting from me which was actually kind of fun because there is a running joke between me and many nurses that I will do all the work but they have to chart.

Little mohawk man on the couch with Mama

Six days after admission, we got everything set up for our home health equipment, and we were ready to go home (again). With Evan’s pulmonary status clearly very sensitive, it was even more important that we keep him in isolation leading up to his hernia surgery that was scheduled for mid-October. If he had any more setbacks, we might have to push the surgery to make sure he was stable enough given his past issues with intubation and anesthesia. We learned how to check Evan’s hernias and reduce them to make sure they didn’t incarcerate.

Right after we were discharged, Evan celebrated being four months old and finally worked his way into 0-3 month sized clothes!

This is what made the potential of pushing surgery so dangerous. If his hernias incarcerated, he would have to have emergency surgery which would completely negate all of the control factors we were putting in place with his surgical team. We had the same surgeon who did his nissen picked out and his “personal” anesthesiologist to make sure intubation went smoothly. He would be the first case of the day, and he would have a room in the PICU waiting for him after recovery so he could be monitored closely. Evan could NOT get sick before surgery.

So our house would live up to the nickname we had for it, Fort Nort. No one in unless medically necessary. When we would go to appointments, no one was allowed anywhere near him unless it was medically necessary. We would cower in the corners of waiting rooms giving people “the look,” the one that says, “Yes, there IS in fact a very cute baby in this car seat, but NO you may not even think about looking at him with your germs unless you want me to cut you.” The “we” here is really just me, but I will lump Alex in to make myself feel like less of a crazy mama-monster. We were already doing all of these things, but now it was so much more important especially with cold/flu season starting.

Crabby baby.
Practice makes perfect!
Our little Hokie “studying.”

We were serious about moving closer to the children’s hospital but hadn’t found anything promising yet. Up until late(ish) September, I hadn’t driven to one of Evan’s appointments without someone else driving my car while I sat in the back if Alex couldn’t take off to come with me. (Alex worked 30 minutes from our house in Roanoke, so to come get us for an appointment, all of which were in Roanoke as well, he would spend two hours just in the car outside of the time it would take to actually have the appointments. Not possible for just taking part of the day off.) There came a day when no one was available to ride with me, so I figured it was time to rip the metaphorical bandaid. Alex would meet me at the doctor’s office.

Little boy, you are so loved.

It was raining. Great start. I ran Evan’s diaper bag and suction machine out to the car. I came back in and got him hooked up to the portable oxygen tank like we always did and put him in his carseat. We went to the car and got hooked in. I waited a minute for his monitor to pick up because I was sure it couldn’t be reading properly: 77%. It wasn’t coming up. I climbed into the backseat to make sure it was on his foot properly and check his color. He was gray. This was real. I quickly suctioned his nose and mouth to clear any secretions that could be causing his airway trouble. No change. I turned up his flow rate to 1 liter per minute when he was normally on a half. No change. I took him out of the carseat and stimulated him because he was limp. He wasn’t getting enough oxygen. I looked at the monitor: 64%. I thought to myself, “This will not be how my son dies. He will not die today. And what’s more, he will not die because I panicked and didn’t handle the situation.” I called our friend, Eric, who is a paramedic and had him talk to me while I worked on getting Evan breathing well again. After what felt like years, I got his sats back into the 90s, but it required him being on 1.5 liters. That was the scariest 35 minutes of my life riding to the doctor’s office. Yup, we still went. I think I pulled over at least once more on the way to give him some stimulation and suction him. I truly believe we were kept safe on that car ride by the hand of God alone. When we finally got there, I pulled him out of that carseat so quickly. That’s what was doing this to him. WE HAD TO MOVE. We could not travel 35-40 minutes 2-3 times a week for appointments or the pediatric ER. It just wasn’t safe.

I told our doctor about what happened on our way there. We suctioned him before leaving and the plan was to have him sit in the carseat for a few minutes before leaving the office to make sure he would be okay. Alex would drive my car back, and I would sit with Evan. We would figure out getting his truck later. Within five minutes, Evan was turning blue again, and his sats were in the 60s. We pulled him out of the carseat and our doctor came back in with two nurses to get his vitals up and his color back. We all gave Evan a stern talking to and explained that this is not the way to try to see his new girlfriends in PEDS. They got him stable, and we headed home mildly terrified but so happy to not have to go back in the hospital. We were seeing the pulmonologist early next week, so we would get a better plan for breathing in the car.

Car bed!

We asked for a car bed for Evan as soon as the doctor walked in. He didn’t even hesitate. They don’t have them in the office, so he sent one of his staff down the street to the hospital to get one from the NICU. Usually that is where families get them. If your child can’t pass the carseat test, you go home in a car bed and retry for a carseat later on at the pulmonologist’s office. Evan, as always, just wanted to do things his own way. So we took an even bigger step backwards with his breathing. But, guess what? It was okay! We got what Evan needed to breathe and travel safely in the car. No more standing in the rain trying to resuscitate my baby all alone. Praise God!

We also made a plan to stay on oxygen support through cold and flu season and reassess Evan’s needs and/or try to ween him off after. There would be no sense in taking him off oxygen during the months when he is most vulnerable to respiratory illness. That would actually be dangerous.

Now that we had everything Evan needed to stay safe and healthy (feeding tube, nasal cannula, pulse oximeter, and car bed) we just had to wait for his impending surgery date. It was a month full of cuddles, reading books, singing songs, learning to SMILE, and loving life with our guy. He still was a terrible sleeper at night, but he made up for it in cuteness.

During this time, Ellie Holcomb released a children’s worship album called Sing: Creation Songs and a children’s book called Who Sang the First Song? We have loved listening to the album and singing along to the sweet truth it proclaims about our God and who we are because of Him. One of my favorite lines in the song, “Sing,” is “God’s song says you’re good and you’re wonderfully made, and I’ll never stop loving you all of my days.” Evan is good because he is His. Evan is wonderfully made in His image. God doesn’t make mistakes. He doesn’t give up on us. He doesn’t stop chasing after us. Ever. God loves my son and fights with us for his health and well-being. He knows that our physical life is temporary, and he is more concerned with our spiritual life: that which is eternal. He is molding and shaping us into parents who can speak boldly to our son about the truth and grace of the gospel REGARDLESS of circumstances. If our faith was only there and we only shouted his goodness when things were easy, we would not have faith at all. It is when times are hard, in trials, in sorrow that we see the fullness and goodness of our God– if we choose to look! It is all about choice. So I will choose praise Him for who He is and for how he shows me His love every day through this precious gift that is Evan.