I feel like a terrible “blogger.” Am I even a blogger? I don’t know. It’s been about seven months since I last posted…whoops. Chalk it up to mom brain, exhaustion, having too much fun, a lot going on, etc, but wow, I kind of suck at this blog thing.
Just here to give some quick updates on Evan and what we’ve been up to lately.
Evan is doing REALLY well. He is weaning a little more from his oxygen, but like anything in the medically complex world, it’s usually one step forward two steps back. We are taking it slow, and we are so proud of his progress. He’s still taking all of his nutrition through his g-tube. Feeding is an area where he is pretty stagnant. He just doesn’t want to do it, so we are just taking his cues and working at his pace. We’ve had lots of appointments and seen lots of doctors, but overall, no major updates. Evan will get some genetic testing results sometime in February that will give us about a 50/50 shot at a diagnosis. If we do not get a diagnosis from that specific test, we may move to genome sequencing.
A few “new” things:
Evan will be getting botox to his neck and wrist muscles in a few weeks in order to help him with his range of motion. We are excited to see how this can help him.
We are getting a new helmet for his head shape in the next week since his head has grown and changed so much.
He got his SMO ankle braces for when we practice weight bearing in his legs. They have dinosaurs on them. They are awesome.
We are monitoring some positional scoliosis from his left sided preference/low tone, but for now his new wheelchair (WOOO!) is an adequate “brace” for him. I am really hoping he doesn’t end up needing a back brace because, let’s face it, the kid has a lot going on already.
Speaking of things we may add to his body, we will figure out his vision prescription this spring as he gets closer to turning two so that he can get his first pair of glasses. I am not going to lie…I am so excited to see how cute he is in glasses.
This summer, we will also hopefully make a final decision with his John’s Hopkins oculoplastic doctor on the potential for ptosis surgery (lifting his eyelids for better clearing of his visual axis).
We are in isolation for cold/flu/RSV season. It’s been so hard watching our other medically complex friends end up in the hospital with RSV or other respiratory illnesses.
Evan is steadily growing. He’s now 20 lbs 10.4 oz and 30.5 inches tall! We will likely increase his calories soon and adjust his formula to help him continue growing and fight off some chronic constipation.
As far as motor skills go, Evan is making slow but steady progress there as well. He’s able to hold his head up for a few minutes at a time now when he is motivated. His trunk muscles are starting to engage more too. He still doesn’t want to bear any weight on his feet, but we are trying! Oh, and, he rolled over!! I still haven’t witnessed it, but he has done it EIGHT times since November. Hopefully, I will be able to share a video of it soon!
We have home health nursing! I will write a whole post on this soon!
I think that’s mostly it for his health stuff! If you know us and I missed something, let me know.
We moved! Early this fall, we bought our dream home! We are still really close to the hospital, and just about everything we could have ever wanted in a home. Moving will also be its own post later. It’s a crazy, God-filled story.
Evan is going to have a cousin! My sister is having her first baby (a boy!) in March. We are so excited! I can’t wait to watch them grow up together!
We’ve been able to have some really good time with our families over the past seven months. We took Evan on his first beach trip, and we spent a couple extra days in Maryland with my family when we went to our last Hopkins appointments. Both Alex and I have been able to make some solo trips to see our parents/siblings this fall too which has been great.
I’ve started volunteering at the hospital as a parent mentor for NICU and peds families. It’s been amazing. Right now, I am taking a break from it because of how many respiratory illnesses are around. I don’t want to bring anything home to Evan!
We’ve become a Children’s Miracle Network “Miracle Family” which is so fun! We were interviewed for the Radiothon that will air in March on our local station and I will be speaking at three different dance marathon events this spring!
We’ve really dived in at the church we started going to this summer, and we are so grateful for the family we have found there. Our faith has been strengthened by the community we’ve experienced. I can’t say enough how thankful we are to be a part of our church.
I am starting to sell some of my crafts to start saving for a wheelchair accessible van and other handicap renovations to our home for Evan. I’ve been making t-shirts for bachelorette parties, onesies, and custom signs and coffee mugs. I find so much joy in creating these pieces for other people. I may start an instagram account this weekend to post items for sale just to test the waters. I don’t know if I am ready for a full on Etsy account yet. Somehow that intimidates me. If you’re in need (or want) of any of these items, contact me!
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!
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.
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!
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!
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.
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.
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.
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.
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!
2019 has been pretty good to us so far. We have deepened new friendships, rekindled old ones, and spent lots of time snuggling our sweet boy. We’re tired, but that is normal for parents of a nine month old, so I’ll take it. Now that we’ve been steadily out of the hospital (knock on wood) for a while, we really have Evan in a set routine which has been so good for him. He is so easily overstimulated still which from my research is a product of NICU life that may not go away until he is out of toddlerhood. All these little disruptions he gets can throw him off for up to a week at a time.
January was mostly quiet for us. Evan did start this lovely liquid poop trend that has continued into late February, so that hasn’t been fun, but I am trying to find as much comedy in it as possible. Speaking of comedy, he also has gotten really good at pulling his cannula out of his nose. I take pictures of it to document his “success” in the #cannulachronicles. Some may say that’s poor parenting to take a picture rather than quickly pop in back in his nose, but I just see it as opportunities for room air trials to help him get stronger with his breathing……and it’s just really funny…okay, mostly it’s the funny thing. I’m still waiting on my “Mom of the Year” trophy.
I mentioned in my last post that we figured out Evan was having a skin reaction to his cranial band (helmet) that he needs to wear to help fix the shape of his head. Up until early January, we weren’t able to give it a true try because of all of Evan’s doctor appointments and hospital stays. The goal is for a kid to wear it for 23 hours a day at least in order for it to be effective. However, our little guy has trouble breathing if he is wearing it and lying flat because of the angle it places his airway, so sleeping in it isn’t really in the cards for him. So the best we would get would be 15 hours a day if he wore it from the time he woke up in the morning until bedtime. The second week of January, we committed to weening him back into wearing it as much as possible. Well, he wore it most of the day with short breaks every day that week aside from when we went out for appointments (he lays flat in the car and breathing is kind of touch and go in the car anyway) and when he was sleeping at night. By Thursday, his eczema and cradle cap looked like they were out of control. On Friday, we saw out pediatrician and she advised us to take a break from the helmet since his little head was so red and irritated all over. Saturday, we ended up in the emergency room after calling the on call pediatrician because his skin had flared so bad we were worried it was getting infected because the skin had broken down so much. We were seen and treated quickly which was amazing. It was our best ER experience yet. They sent us home with the plan to use hydrocortisone cream mixed with bactraban cream to fight off a staph infection since with Evan’s history, staph was likely to develop. (Evan’s MRSA status has to be a post all by itself; stay tuned.) We followed up with our pediatrician the following week and she added a daily antihistamine since some spots on his body looked like hives and a consultation to the dermatologist mostly because she “just doesn’t trust Evan.” I don’t blame her. I don’t trust him either.
Our sweet baby just can never catch a break it seems. We have since been able to keep his skin under control with a lot of steroid and antibiotic creams and lots of lotion. We use Tubby Todd; it’s amazing, and I highly recommend it to anyone with a kid who has sensitive skin.
We saw cardio for a follow up echo on Evan’s heart to see if the lasix he was prescribed was helping to shrink his pericardial effusion. It was! I could even tell just looking at the screen that the fluid pocket had shrunk. I don’t know if that’s a good or bad thing. Have I seen too many echocardiograms? Probably. Oh well.
We had some random nice weather this month which provided us with the opportunity to leave the house without a doctor to see. That is a very freeing feeling. It makes me long for warm weather and the end of cold/flu season so much. We took three walks in the stroller that week! I feel like I had forgotten what it’s like to be outside and moving. Oh, it was so nice. Evan liked it too! He really enjoys riding in the stroller which is so helpful for me since that’s how I get him in and out of all of his appointments.
Our follow up with pulmonology about his breathing landed us with a consult to the sleep clinic at UVA since Roanoke doesn’t have a pediatric sleep lab. Evan was still having significant oxygen desaturations each night even with his flow rate turned up. We (I) had gotten used to it at that point and I knew how to handle it. It’s not fun watching your kid struggle to breathe, but for us that’s life. It mostly just meant that I was going to wake up an extra 3-8 times every night to the lovely sound of his oxygen alarm. If you’re an O2 mama with a Nonin pulse ox, you know the sound. We went for the study in early February, but it takes three weeks for them to fully score the test since it measures so many things at once. The trip there was stressful. We took extra oxygen tanks, planned time for stopping to give Evan a break from the car bed, and mostly just freaked ourselves out. I mean, we moved so that we could avoid a 40 minute drive to the doctors, and now we had to drive two hours to see one. Hooray…not. Evan’s pulse oximeter wasn’t reading well the whole way there, so it just kept beeping to the point that I was more stressed out than Alex which is not the norm when it comes to Evan (thank you, medicine). But we made it in the freezing cold and survived the night. On the ride home (a Sunday morning, mind you) 81 was standstill traffic. We actually put the car in park at one point. And here lies one of my many fears about traveling with Evan: what do you do if you’re stuck in traffic and can’t go anywhere and the baby stops breathing, or the oxygen tank runs out, or the baby starts choking on his spit and needs to sit up, or there’s an emergency we can’t handle and we have to get to the nearest ER? We’re supposed to go to John’s Hopkins for a genetics specialist in June, and I am already nervous about the drive and overnight stay. But…that’s a long time from now, and things could be very different by then. And Jesus. I need to trust in Jesus more when it comes to Evan’s safety in these situations.
Now back to Evan’s liquid poops. You may be laughing thinking “oh okay, the kid has some diarrhea, big deal.” And that’s what I thought the first two weeks of it too. We had attempted to ween into a formula with milk protein in late December, so we concluded that the diarrhea could simply be residual gut irritation from that. And when I say liquid poop, I am not using hyperbole. It was actually liquid. You can ask any of the nurses I sent pictures of it to. (If you don’t have nurse friends, you need to find some.) And then we were on week three. Then four. Then five. Clearly it wasn’t the two days of that formula. After more stool studies than I can count (if you need to commiserate over picking your child’s poop out of his diaper with your hands, I’m your girl), we still had no definitive answer. I was on the phone with Evan’s GI doctor every week about it, and he decided that since his labs kept coming back normal, we needed to get him on the schedule to do a full scope of his upper and lower GI tract with biopsies and bloodwork to try and find a cause. While we waited for our scope date, I just continued to live in a world where my nostrils burned with the stench of 1,000 poops on a daily basis. Did I forget to mention the smell? Yeah. It’s horrendous. You can smell it from across the room even if it’s just a tiny shart.
Evan’s scope date arrived, and once again I found myself finding excuses to snuggle him extra the day before and give him more kisses than any boy would ever want from his mama. I hate when Evan goes under anesthesia. And for a nine month old, he’s done it quite a lot! Luckily, this means that we get to basically have our own personal anesthesiologist. We are kind of obsessed with her. She has done every single one of Evan’s intubations, and we wouldn’t have it any other way. We got to the hospital bright and early (lol, jk, it was pitch black; it’s winter) to get him into pre-op. This time Evan got to wear a cute creamsicle colored gown that was, of course, enormous on him, but still adorable. He was very calm and snuggly as we waited for him to get taken back, and when they wheeled him off he was happy as can be. I think he thought the OR nurse was cute, and he was trying to flirt. When our anesthesilogist came in for us to do consent forms she asked us if we were prepared to stay overnight (it’s typically her call since his issues stem from the process of getting put under), and we said yes (with a sigh). As long as Evan behaved, we would get to go home that day.
While we waited in the pediatric waiting room we talked with another couple. They had seen us roll in that morning and talked about how they were so sad to see a baby getting a surgical procedure. When their kid’s surgeon came to let them know he was finished and awake so they would get to go back soon, he also stopped to say hi to us. You know, because all the surgeons know us at this point. He said, “I saw Evan rolling down the hall, and I couldn’t believe how big he’s gotten!” Our sweet doctors. They don’t forget us. They see us. They know us. They love us. We found out later that he even went in to the OR to check on Evan’s intubation, since Evan is kind of a legend in the peds surgery world, and ended up placing his IV for the team. What a guy. We talked a bunch with the other couple after that. The woman said, “It’s sad that your kid is that tiny and the surgeons recognize you.” They were sweet. They asked questions about Evan and gave us a lot of encouragement about our parenting just from the 15 seconds that they saw us with him. I needed that last week. I needed someone to say “Hey. I see you. I see how hard it must be to be in your shoes. And you’re doing a good job.” So to that couple, thank you.
Once Evan was finished, they came to get us and let us know that all of his anatomy looked fine, so there were no issues there causing his chronic diarrhea. It would be about a week before we got all of his lab work back. He did still have some issues with intubation, but nothing new that would keep him in the hospital. We got to go home! And we are lucky enough to have his anesthesiologist for his next surgery in March. Evan took a little nap with his daddy, and then we got cleared to take him home. He would be cranky and uncomfortable for the next day or so, and we were told that we might see some blood in his stool or when we vented his G-tube, but that it was normal because of the biopsies. Flash forward to this week–his labs all came back normal showing nothing that could be causing his stools. We will meet with his GI team next week to discuss our next steps in figuring this out. So until then, I will wear my surgical mask coated in vapo rub with pride as I change a million poopy diapers a day.
To recap, we fight the eczema and cradle cap battle on a daily basis. We have had to forego the helmet completely for now because of how bad he reacts to it, but we just got remeasured today for a new one that *might* not give him a skin reaction. We live in the land of lava poop. And we’re really working on that whole not being terrible at breathing thing.
Some fun highlights of the past couple months are necessary for this post to be complete. And why not do a photo montage to do it?
Our guy is doing really well despite all of the challenges he faces. He smiles. He laughs. He loves getting wrapped in a towel after his bath. He is getting more motor skills and is probably going to hit some of those “three month” milestones in the next month or so.
I am sure to those who follow me on Facebook and Instagram, my posts about Evan tasting food or putting his hand near his mouth or whatever else it might be that day seems trivial and maybe even annoying. Like “cool we get it, your baby is doing baby things.” But for Evan to be “doing baby things” is incredible to us. I was practically yelling at people telling them about him tasting food last week because I was that proud. These milestones mean so much more when we have fought with literal blood, sweat, and tears to get here. None of the normal baby milestones have had or will come easy to Evan. He has to work harder than most for all of them, so we will shout it from the rooftops and we will celebrate every single one of them no matter how small. Every victory is a victory.
When my sister in law, Katherine, was going through cancer treatment, her favorite verse was Philippians 4:13 “I can do all things through Christ who strengthens me.” So it is on my mind a lot. I recently saw a post somewhere about how we so often take this verse out of context. We use it to encourage ourselves that we can literally DO all things. Almost as a mantra of “because I know Jesus, this thing I want will happen.” That couldn’t be more wrong. We are at the mercy of His will in all things. And when Paul said this in his letter to the Philippians, he wasn’t saying that things would go his way because he knew Christ. He was saying “I can endure all things through Christ who strengthens me.” When we seek Him first and trust Him, we will find strength to persevere, to keep fighting, to keep going when the world feels like it’s crumbling at our feet or when the road ahead is too bumpy and twisty to have any idea where it leads.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
This was it. My life dream was about to be fulfilled. Me. Brooke Norton. A stay at home mom. As scared as I was to be completely on my own with Evan for the first time, I was excited to enter into this new season of life. Me and my guy, all day, every day. We would read books, sing songs, cuddle, nap (maybe even at the same time), and let’s be honest–watch a lot of Netflix.
Day One: Evan did not sleep at all without needing to be held that first night before Alex went back to work. I assured him we would be fine all night so he could get a good, solid night’s rest. I hadn’t slept more than an hour and a half when he left for work that day, but I was still thriving. I cleaned, kept up with dishes, did laundry, stuck to Evan’s strict feeding and medication schedule, did his G tube dressing changes, and kept him happy all day. When Alex got home that night I think we were dancing to “Brown Eyed Girl” in the living room. It was everything I had ever dreamed. I was exhausted, but I was doing it. I was actually getting to be a full-time mom. So much of our life up to this point felt like part-time parenting which is excruciatingly painful–ask any NICU parent. This simple joy of being with my baby and being all he needed was incredible.
Day Two: Things fall apart. Evan had been congested the day before, and I wasn’t able to get much of anything with the bulb syringe or the electric snot sucker we bought. I called the pediatrician and they said to keep an eye on it and call back the following day if he seemed worse. We had gotten an Owlet Sock for him at one of our baby showers. For peace of mind and to make the transition from constant monitoring easier, we kept it on him all but four hours a day (when it had to be on the charger). It doesn’t alarm like the monitors in the hospital. It won’t go off until the baby’s oxygen saturation reads 79% or lower (normal is in the 90s- preferably the high 90s). Evan’s went off five times by 1PM that day. Something wasn’t right. He was pale and lethargic. He needed to be stimulated to bring his oxygen back up. I took his temperature. 100.5. I knew what this meant, but I wanted it to be wrong so badly. So I called the pediatrician’s office as a last ditch effort to be told something different from what my gut knew to be true–I had to take him to the emergency room.
We lived 40 minutes from the pediatric ER. I couldn’t drive with him so unstable in the back seat this whole way. I called everyone I knew who worked in the medical field to come drive with me to take him in. I was on my last person, and if she didn’t pick up or couldn’t come quickly, I would have to call 911. This was NOT the stay at home mom life I signed up for.
Amy was able to ride with me. While I waited for her to come, I packed up everything I could think of that we might need if we got admitted which seemed highly likely to me. I let Alex know what was going on and told him to meet us there after work. When we got to the ER, Evan’s temperature had spiked to 102.5 and his oxygen saturation was 77%. He was dusky looking at best and barely moving or opening his eyes. They got him on oxygen immediately and waited for the pediatric team to decide if he needed to be in the PICU or regular peds floor. This would be the first of many ER visits for us over the next few months.
When Alex arrived, Amy left, and I let myself cry. The worst part of Evan being sick was that I knew how it happened. I caught a cold the week before and did EVERYTHING possible to keep him from germs aside from moving into a hotel. I washed my hands a thousand times a day, used hand sanitizer constantly, wore a surgical mask so I couldn’t breathe on or near him, limited my contact with him when Alex was home, slept separately from him when possible— the works. But it was inevitable. I blamed myself for us being in this situation. For only making it 18 days out of the hospital before being right back in it.
We got admitted that evening and spent the next six days waiting for Evan to recover and be able to breathe consistently without oxygen. This is what happens when a NICU baby gets a simple cold.
In the midst of Evan recovering from this cold, he also had some other mishaps. He screamed without stopping all night every night that we were there. It was his pain cry (which is actually his only true cry–everything else is just fussing). Eventually one of his doctors figured out that with the malformations in his brain, it was likely that he was having phantom nerve pain, so she prescribed a medication to alleviate this pain. It took a few days to kick in, but it worked! Evan also had his first G-tube button change while we were there. Not scheduled. At 3am one night, the balloon that keeps his button in place busted and his G-tube came out leaking stomach contents all over him and his bed. We had to wait forever for surgery to come fix it. It was miserable, but his night nurse stayed with me for three hours while Evan screamed in both our faces (we love you Loganne). Surgery also discovered that Evan had bilateral inguinal hernias that would need to be surgically repaired as soon as possible. Great….another surgery. Just what we wanted to hear.
During our stay, I went 62 hours in a row without sleep. Getting to stay the night with Evan was new for us since he had only ever been in the NICU before. It was wonderful but also so hard. Evan’s palliative care doctor had to get Alex to kick me out to go home and sleep. We were lucky enough to have Amber get pulled down to the PEDS floor while we were there, and we more or less demanded to have her as his nurse. Our NICU family was still taking care of us. Several of his nurses, doctors, and therapists came in to see him and check on us while we were there. We also started building our PEDS family that week. The nurses we had that week would become our regulars in our future PEDS visits.
Evan was finally weened completely off the oxygen again and was ready to go home with follow up appointments scheduled to plan out his hernia surgery. This discharge was a lot happier than the last. We had gotten used to home and wanted to be back there.
It is crazy to think about how chaotic that week was. Anyone who saw me could tell you I was a mess. I feel like I was “that” mom on the PEDS floor who nurses dreaded because I was so strict about Evan’s schedule. Even though I was a disaster, I am thankful for that admission because it helped me find my voice in advocating for Evan’s needs outside of the NICU. When we were on the 14th floor, I often didn’t have to advocate for him because he had a team of dedicated nurses who knew him just as well if not better than we did and loved him so much. They did it for us. Now we were in new, uncharted waters. The 11th floor was just different. Being outpatient was different. All of it is good, but we needed to get used to a new normal (again). I’m happy (and maybe a little sad) to say that we now have a sense of normal and routine in being on the PEDS floor or in going to over a dozen doctor and therapy appointments a month with Evan.
For me, being a stay at home mom has been a lot of being a stay at hospital mom. This was just the first of many admissions we would have in the months that followed. But I wouldn’t trade it. I am certain that God chose me specifically to be Evan’s mom, and I thank Him every day for that undeserved blessing.
We moved back to D pod at the end of July. I had some pretty negative emotions towards it because I hated the three weeks we had spent in there previously, and we had a really good carespace in C pod. We needed to get out of there quick! Or so I thought…
We had been prepared to be parents. We were prepared to bring home our baby, get little to no sleep, feed at all hours of the night, handle some spit up, poopy diapers, you name it. This is what we anticipated the majority of our pregnancy. NICU life was kind of outside of all of that if that makes any sense. Our life there was confined to the walls of the fourteenth floor. Now we were actually getting ready to bring Evan home. We’d be at home, by ourselves, with a baby who had been getting around the clock medical care for the past 80 some days. This was not what we prepared for when we were waiting for our sweet guy to arrive.
I recently read a post somewhere called “Welcome to Holland.” It’s about being a special needs parent. Essentially it says that it’s like preparing for a vacation to Italy. You plan and plan. You learn all the places you want to sight see, book your hotels, plan where you will eat, etc. But when your plane touches down, the attendant says “Welcome to Holland.” This wasn’t where you planned to be. You have to learn all new places to see, book new hotels while cancelling the ones in Italy, research new restaurants, etc. Holland is great. It is beautiful and wonderful, but it is not Italy. This is the sad paradox of being a special needs parent. You are overwhelmed with love and gratefulness for this little life before you, but there is still grace to grieve the life you had expected.
Bringing Evan home finally put me in a dark place. This was it. This was supposed to be the best moment of our lives. It was supposed to be nothing but joy. But, I suddenly was overcome with doubt, anxiety, and fear. What if I can’t do this? What will I do without monitors, alarms, and nurses here? What if something goes wrong, and I am home alone? I spiraled into full blown Post-Partum Anxiety, but by the time I called my OB to get medication, we were too close to discharge for it to kick in before we left. I couldn’t function. Remember before when I said I throw up from any strong emotion? Well, anxiety is a very strong emotion. Every time Evan cried I had a panic attack that led me to vomiting. I could barely eat. I couldn’t sleep.
We were supposed to go home on a Friday. Evan just had to pass his carseat test. Martha tried not to let us be there for it because she knew I would just stare at the monitor the entire time…she knew me so well (and still does). I convinced her to start it while we were still there though, and we left about an hour into it. He passed on the first try! I was SHOCKED.
Every time I called that week during the night, the nurses said “he’s been a little fussy.” Then he would sleep all day. Something felt off to me. His night nurses that week were ones he hadn’t had before, so they didn’t know him or his personality, and we were in a different pod now, so the rest of the nurses in there hadn’t really seen him much either. It wasn’t until Thursday night, the night we were rooming in (staying overnight in a special room for parents whose babies are about to go home) that someone else realized it wasn’t right. Brittany was back that night, and she could tell that Evan’s “fussiness” was not him at all. He screamed from about 6pm-1:30am at least that night. Something wasn’t right. To top it off, I came down with a stomach bug that night (different from my anxiety pukes) and we had to call off rooming in and go home. The next day, to protect Evan from germs, I couldn’t go to the NICU at all. I cried the entire day while Alex sent me pictures, and Amber reassured me that she wouldn’t let them send us home without assessing Evan.
The next day, I was alone with Evan the whole day while Alex went to Richmond for his brother’s wedding. It killed us that we couldn’t both be there, but we couldn’t leave Evan alone especially since something felt wrong. The new plan was to leave on Monday. However, his temps were low that day, and he was having more desaturations than normal, so his nurse asked the doctor to run some labs. They did a septic work up on him. They started him on antibiotics to be safe and they tweaked his feeding schedule a bit to try and help him be more comfortable. We didn’t go home that Monday, because we were waiting on labs and for him to be more himself still. Tuesday night we roomed in again, and things went much better. We got practically no sleep at all, but Evan was more himself. Wednesday morning we would be able to take him home! When the doc walked in that morning, I could see it all over her face. We weren’t going home. His blood cultures came back with MRSA (not at all surprised, but that will be a post all by itself–cue laughter from any of his NICU care team reading right now). They were pretty sure it was just a contaminated sample, but they couldn’t send us home without rechecking. Evan also got genetics labs pulled that morning too that we would follow up on outpatient. The new plan was Friday…again.
Friday came. Alex worked a half day because with all the back and forth, he had taken off too many days. He wanted to be able to spend two weeks at home with us as we adjusted before going back. Addie was working days now, so she was our nurse for discharge. It was so nice having one of his “people” there for this moment. It was even better that his other primaries came in just to see him off. Brittany, Maegan, and Amber all came in on their days off just to celebrate this moment with us. Like I said before–FAMILY. They have loved our sweet boy unconditionally from the moment they met him, and they continue to love and care for him (and us).
I was terrified, but so excited. We put Evan in his “discharge onesie,” and got all the paperwork signed, packed up his things, and got him in the carseat. It was really happening! Maegan even gave him a sock to free him from the NICU. It was such a fun moment.
The drive home was scary, but we did it! We walked Evan around the house to show him his new home (he was unimpressed), and then we just enjoyed being alone. It was surreal. We had a bunch of medications to keep up with and a rigid feeding schedule, and Evan still had his days and nights mixed up. Add in my PPA that was still not alleviated by my medication, and you get a rough transition. Alex was my hero in those first days home. I was still unable to control my panic attacks, and I would have to leave the room often. He took care of both of us that first week home, and I have no idea how he did it. Well, I do. It was Jesus.
Discharge was such a picture of the gospel to me. I was in my time of most need. Evan is always in his time of most need. And there was Alex laying his life down for us. Sacrificing sleep and sanity to love us in the ways we needed expecting nothing in return.
By the end of Alex’s two weeks off, we had tackled more doctor’s appointments than I can count, celebrated Evan turning three months old AT HOME, and kept the baby alive and mostly happy. He still wasn’t sleeping right, but we will take whatever victories we can get. Oh, and my medication finally kicked in, and I felt like myself again.
Tomorrow, I will tell you the triumphs and woes of my first days of stay at home momhood. I’ll tell you this: it’s not boring. That’s for sure. Life with Evan never is.