So, we are doing a thing. We love NICU families, and we want to serve them in anyway we can. One way is through volunteering on our NICU’s Parent Advisory Board. Another is praying over these families. Soon, I hope to become a mentor for NICU parents. I guess one way is this blog? I don’t always know who I am reaching with this, but I pray there are NICU mamas and papas on here. But, anyway, we have a new way, and it is awesome y’all.
While Evan was still in the NICU, Alex bought me a new Cricut cutting machine, so I could make Evan cute custom onesies to bring me joy in a hard time. I think this machine is the best gift he’s ever given me. Anyone who knows me and sees pictures of Evan, knows that he wears a custom onesie almost every day. I am obsessed with making them. It is so much fun and weirdly relaxing.
So back to this thing we are doing. We’re making onesies for NICU babies. On Evan’s birthday, we made our first delivery to Carilion Children’s. Our hope is to keep this project going as long as possible. We recently started a GoFundMe page to help pay for the supplies needed to make these NICU Graduate shirts.
If you want to help us, we would be so grateful! I recently ran into a woman at Carter’s when I was buying more onesies, and she knew a baby who got one when he left the NICU last week. She told me it was such a sweet gift to the family and that they loved it. How cool is that? I did not think that I would meet anyone who got one of these shirts any time soon, but there she was sending me a wink from God letting me know that this was a good thing we are doing. We have a little ministry card that we are attaching to all the onesies. It has an encouraging note from us, a verse that helped us through the NICU (Psalm 61:2), and a link to this blog.
I told you that there was making in the breaking. He is bringing good to His Kingdom out of a place of uncertainty and pain.
I do need a little more help though. I hate calling this “Evan’s NICU Graduate Project.” It’s so boring and uninspired. Can y’all give me some suggestions for this? One day, we may turn this into a non-profit and offer even more to these sweet families, so it needs to be good! Leave a comment or email me through the blog with your suggestions.
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.
Today was supposed to be Evan’s birthday party. He had a custom onesie. We had balloons. We had banners. A menu planned. There was going to be a photo booth. It would have been the most “extra” first birthday party ever. Because Evan is extra. And extraordinary. His first year was so hard. He experienced more than most people experience in the lifetime. He fought hard. He was a warrior.
But today is not Evan’s birthday party. Our little celebration just the three of us will have to suffice this year. And it will suffice.
We were off isolation. It was great. We were still so careful. Choosy about where we went, what time of day we went, who could get close to him. Still no one really touched him. But then we found out that our sweet Evan’s most recent blood-work showed that his little body does not have an immune system. And this isn’t the all preemie babies type of weak immune system. This is the oh-hey-it’s-a-miracle-you’re-not-deathly-ill kind of weak immune system. So it’s back to heavy isolation most likely until next summer. It’s a great thing I am not super extroverted.
We are being referred to John’s Hopkins for immunology before we start IVIG (immune replacement therapy). This treatment is a lot like chemotherapy in how it is administered. Evan will go to the infusion center every three weeks to get an IV placed which will then infuse the immunoglobulin IgG (a blood product) into his body for about 4-6 hours. We are, of course, not thrilled that this is what we will have to do, but Lord are we thankful that there is a treatment for this! As we face every little thing with Evan, I am consistently blown away by the miracle of modern medicine.
That’s our biggest news of late, but I know it’s been a while since I updated y’all on Evan’s health, so I will give you some highlights.
The helmet is going really well! It is doing it’s job, and he is tolerating it so well now. He doesn’t even notice its there most of the time.
Eye surgery was officially a success. He hasn’t had any issues.
Some more genetic testing ruled out a huge list of potential diagnoses possibly bringing us a little closer to a diagnosis, but maybe not, and that’s okay.
He passed his car seat test back in April, so he now rides like a big boy! That was such a big milestone for us.
Breathing is seeming to improve, but his body is just asked to do so much every day. It’s going to take a while to get to a place of not needing O2, but he is making progress. He can tolerate room air trials throughout the day. He definitely still needs it at night and in the car.
PT and ST are going great. Evan is getting closer and closer to being able to hold up his head every day. He has also tried a few more tastes of food, and we are working on being able to drink water from a sippy cup.
We will start OT this month to help with sensory issues and fine motor skills. I am really excited for this.
He is growing! We finally broke through to 19 lbs this week after some calorie adjusting. He’s still not on the charts for height, but he has cute little arms and legs, so I don’t care.
We have been cleared by neurosurgery for now which is so awesome. His MRI from this week showed that the extra fluid in his brain isn’t causing pressure. Also I love seeing his scans because I think his brain is so cute.
We still have a pericardial effusion, so he is staying on lasix. At this point the cause is most likely from whatever is going on genetically.
How We’re Doing…Really
In my last post, I wrote about John 9 where Jesus explains that these things do not happen for no reason, they happen so that His mighty works would be revealed. I fully believe that, even in my moments of hurting.
Last night, I texted some of the close friends just to rant about how tired I was and how I just was feeling defeated. It is so important to have people you can go to and be real about your feelings with no shame involved. They don’t spit religious platitudes back at me invalidating my feelings. They listen. They love. They encourage. Find your people. Find the people you can go to when you’re hurt and broken.
This week has felt like a year. I am exhausted and my body just hurts. We had two blood draws, an MRI, lots of phone calls with insurance, doctor’s offices, and Social Services, a drive to and from UVA, and a helmet fitting. Oh, and this guy is being a terrible sleeper, so I’ve been up multiple hours every night. Last night, I was just so spent. I felt like I wasn’t measuring up to the roles I have to play each day. I realize that I am not “just a mom.” On any given day, I am also a nurse, a respiratory therapist, a physical therapist, a speech therapist, an occupational therapist, a master scheduler, an insurance advocate, a social worker, a realtor (we’re looking for a house that will suit Evan’s needs), a body guard, a medical transport specialist, and the list goes on. I barely have enough left in me and the end of most days to be a good wife, daughter, or friend. It’s all enough to break a person.
And I am broken.
I would be foolish to think for one second that God is not working in this hard season. I will not for one second believe that God has forsaken us. There is too much evidence to the contrary.
We enjoyed some “normalcy” in May being out of isolation for a couple weeks. Then last weekend, we were told that it would just be that. A couple weeks. A tiny taste. A tease really. I let myself feel broken and sad about it for a day. And then God moved.
My dear friend, Melinda, released her first single “Sweeter” on Monday. I remember waiting for this single to release for so long! I kept thinking, “okay, but why do we have to wait until June?” Now I know. I needed the freshness of this song in my life at just the right moment. I needed to be reminded that He would make a way for joy and goodness in my loneliness. So to the mom who just found out she would need to stay in the house away from people until next year, God spoke these words through Melinda:
“Every moment gets sweeter by the minute whenever I’m alone with you. You take brokenness and blend grace within it. I’m so amazed by what you do.”
Ummm. Okay, God. I see what you did there. If I did not have to spend all this time in isolation with my child, I would not experience the intimacy with Christ I’ve felt amidst the deafening silence of my loneliness. And y’all, it really is sweet.
If Evan had not been born premature with medical issues, I would not have met the nurses and therapists who not only took care of us when we needed it most, but also became close friends and mentors. We would not have moved to Roanoke. We would not have joined the church family that has blessed us so dearly. Our marriage would not be as strong as it is.
If I hadn’t had to face the heart-breaking reality of almost losing my son more times than I can count, I would not have the appreciation for the Cross that I do now. God allowed His Son to die on a cross for MY sin. To reconcile my heart to his. He did this for us. I would not wish this perspective on anyone, but I am finding myself grateful for it.
I am learning that faith is not about being focused on our outcomes. We are not guaranteed anything in this life. We are not owed anything. We’re the ones with the debt! But God is faithful and good regardless of what we are facing.
This life we are leading is hard, and it is more than we expected.
More exhausting. More hard work. More heartbreaking. More frustrating.
But–It is also more joyful. More life-giving. More refining. More awe-inspiring. More of Him.
There is making in the breaking. Our feelings will often shout so loud that we can’t hear the tender whispers of Jesus beckoning us to turn to Him. But if we listen close, he is saying:
I am making a new thing. I am here. I hear your cries. I ask you to trust Me. I will take your shattered pieces and breathe new life into them. Into you.
Whatever brokenness you are facing today, know that this is not the end of your story. God is still working even when He feels far. He is making something new and beautiful. Because He loves you.
This is the first question people ask of God when something doesn’t go according to the plan. You lose a job. Your marriage falls apart. You lose a loved one. You receive a diagnosis you weren’t expecting. You lose a child. You can’t conceive a child. The list goes on.
We ask why. Why me? Why did this happen? What did I do to deserve this?
In John 9, Jesus answers that question for all of us. He and His disciples come upon a man blind from birth. The first question asked is “Rabbi, who sinned, this man or his parents, that he was born blind?” Immediately, this thought that all of our circumstances come out of decisions we make or our sins comes to question. Jesus answers simply, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” That it, y’all. That’s the point. God is working things together that His glory and goodness might be displayed.
I think when we focus on this “why,” we are shifting our focus onto self rather than our Creator. We are saying that we are better than our circumstances. This shouldn’t happen to me. Maybe someone else, but not me. We cheat ourselves in thinking that our circumstances come from how “good” of a person we are or what we have done for the Lord. It’s not about that. And that is not to say that striving to be like Jesus and be for His Kingdom is futile. But we do not do so wholeheartedly if our aim is for reward. And I think our motives come into light when we sit and ask, “why?” when things go wrong. It’s really saying, “Where is my reward?”
Focusing on why, takes our focus away from the true why, if that makes sense. I have had so many people look at us with pity and some have even said “I don’t know why this happens” or “I am sorry this happened to you/your son.” I am here to squash that method of thinking. My son is here just the way he is ON PURPOSE, FOR A PURPOSE. He is fearfully and wonderfully made in the image of his Creator ‘so that the works of God might be displayed in him.’
I will not ask God why Evan is the way he is. I know why. Evan was created for a purpose grander than we could have ever imagined for him. His life brings glory back to God. His struggles and his triumphs display God’s goodness and faithfulness. He has been created perfectly for his true purpose on this Earth. I have no doubt that Evan’s life and his story will bring people to Christ. It may have already done so. I know we have experienced more intimacy with the Lord than ever before through this past year. For that, I am eternally grateful.
The story in John 9 goes on to show Jesus spit in the dirt and rub it on the blind man’s eyes to give him his sight back. In this time, a blind beggar would most certainly have experienced people spitting in the dirt around him to show their contempt for him. So when Jesus chooses this way to heal him, I think it is significant. Our road to redemption is often messy. The hard things placed before us can shout the lie to us that we are not worthy. Jesus’s spit doesn’t say “you are not worthy,” his says, “I make you worthy.”
I challenge you (and myself) to choose to see His goodness in your circumstances. To stop asking “why me” and focus on Him. To stop thinking that doing good in this world will gain you favor and an easy life. To remember that faith doesn’t say “what if” it says, “even if.” To rest your heart in His truth rather than the lies your circumstances bring to the surface.
You are loved. You are chosen. You are worthy in His sight.
*Featured image credit goes to Ashley Powell Photography*
Quick updates first! Evan’s lacrimal duct surgery went well, and it seems like it worked! They don’t give you an official “it’s fixed now” until you are a month post-op, so we will know next week! But I think it looks great! Hopefully this means the end of our MRSA woes. They did not do his ears that day because of scheduling issues, but that is okay! It’s not a pressing issue. The new helmet is also working out for us! We have had no skin issues, and Evan has been able to wear it to sleep without issues in his breathing. Huge praise! He also is finally on the growth charts! We made it to the 2nd percentile this past week for weight! And we got our first tooth!
I haven’t written in almost three weeks, and it’s mostly because this was the post I had planned. Being in isolation has been a touchy subject at times because this is the part of my version of parenthood where I feel the most misunderstood and maybe even judged a little.
First I want to make it known that we are not outright germaphobes. I mean, am a firm believer in the five second rule after all. We don’t keep Evan from the world because we are overprotective. We keep him from the world to keep him alive. We are doctor ordered into isolation for the entirety of cold/flu season. In fact, we had an appointment last week to get our last RSV vaccine of the season, and I asked when we would be able to come off of heavy isolation. We have to stay on it through the end of April. Doctor ordered. Not a personal choice.
So what does heavy isolation look like? Well, a lot of me and Evan hanging out by ourselves in the house. We limit visitors and we have strict rules for who can come in the house and in what state: must have the flu shot, all vaccinations must be up to date, and must not be in any way shape or form sick. This includes seasonal allergies. We can’t trust that someone’s scratchy throat or small case of the sniffles is “nothing.” Because nothing to you, could be life or death to my son. When people come in the house the first thing they must do is wash their hands just like when we were in the NICU. If someone holds him, they need to have a clean shirt on that hasn’t been out in the cesspool of germs that is public spaces. Evan only leaves the house for doctor’s appointments, and when we go he is covered up in his stroller so strangers can’t see him so they will be less tempted to try and get in his business. Of course, that doesn’t stop everyone, and I have had to “educate” some people in elevators or sidewalks about not coming near a baby you don’t know. Especially one who has multiple tubes and wires coming off of him and a giant stop sign hanging from his stroller.
Our rules extend to us too. We don’t expect others to follow difference guidelines. When Alex gets home from work before he comes near Evan, he washes his hands NICU style and changes his shirt. If I go out, I do the same exact thing. Half of the time, I take it even further, and I shower and completely change my clothes. If one of us gets the sniffles, we limit our contact with Evan as much as realistically possible, and we wear a surgical mask. I’ve had to do this twice since we brought Evan home from the NICU. Once was a few weeks ago when allergy season started, and the other time was two weeks after we brought him home. That time resulted in two separate six day hospital admissions for Evan. Like I said, what may be just the sniffles for me and you is life or death for my son.
This is why isolation is important. While a “typical” or term baby/child can usually handle his/her first few colds without any medical intervention, my child is pretty much guaranteed an emergency room visit and a hospital stay. At baseline, Evan has difficulty breathing. He is on oxygen therapy. He has Type 3 Laryngomalacia meaning his airway will collapse at times when he is trying too hard to breathe. He also has a weak swallow reflex and can’t handle simple secretions like his own spit, add in some extra mucus, and it’s a disaster waiting to happen. His lungs are underdeveloped even at 10 months of age. They have not caught up. His bronchial tubes are more narrow than those of a term baby. This is why it is so incredibly dangerous for children like Evan to get sick.
This is also probably why we find ourselves feeling so misunderstood in this aspect of parenting our sweet Ev. If you haven’t been a preemie parent or parent of a medically complex kiddo, there is no way you would know or understand any of these things. So here I am to explain it as best I can. And if you’re on our care team, and you see a mistake here, please email me so I can fix it!
Premature babies born at 34 weeks gestation or fewer, have significantly underdeveloped lungs. It takes a long time for these babies’ lungs to catch up. Just because he/she is cleared to leave the NICU does not mean that all is peachy and he/she can be treated like a “normal” baby all of a sudden. Having underdeveloped lungs puts these children at a much higher risk for hospitalization, severe illness, and complications if they were to get sick with even the smallest cold. This is why babies born at 30 weeks or fewer gestation and babies with chronic lung disease requiring oxygen support qualify for the Synagis vaccine. While it does not completely protect babies from catching RSV, it reduces the severity of symptoms thus making it less likely for the baby to need to be admitted to the hospital. This shot is given once a month for all of cold/flu season (October-March). Shots end in March, but they protect the baby into April. Evan just got his last one for this season last week! Praise the Lord because that shot is the worst.
I also want to clear up a common misconception about germs. Many people say that we should expose our children to germs to “build their immune systems.” Well friends, I hate to break it to you, but that is a load of crap. Alex and I got into a debate about this the other day, and of course, I won after we did some research. (All of which I now cannot find because I don’t remember what my search terms were, sorry to all my fact checkers out there!) Time is the only thing that actually builds a baby’s immune system. Exposing my baby to germs will only make him get sick repeatedly. Yes, there is evidence to support the fact that once we get sick with one virus, our body remembers it and is able to fight it if it comes back along. This is the idea behind how vaccines work. But here’s the problem with that fact and why it is so overly simplified: it’s only that specific virus that your body will recognize and fight, and unless the exposure is from a vaccine, your body has to get sick first in order to “build immunities.” This is why you can get the flu shot and still get the flu. You are getting sick with a different strain of the flu that wasn’t in the vaccine. This is why you don’t catch one cold and never get another cold again in your life. So no, exposing your kids to a bunch of germs and viruses doesn’t really “build their immune system” in the sense that they will not get sick as much. They just won’t get the same exact cold more than once, but they will get colds. I believe I read that the average child gets 4-6 colds per year. So you can only imagine how many different viruses are out there. Yikes. So I will not be listening to the outdated advice we have believed to be true for so long. Exposing Evan to all of these germs and viruses will only cause him to get sick and possibly die at this point in his life. It’s blunt, but it’s the truth.
This is why it is reasonable (more like necessary) for us to be “crazy” and “overprotective.” Evan is extra sensitive to germs; his immune system is weak because he was premature (and extra small for his gestational age); his lungs are weak and underdeveloped. I’ve mentioned repeatedly on this blog that I am getting cabin fever, but I think preparing to write this post has given me the perspective and awareness to keep on keepin’ on. It would be so nice to just take Evan over to one of our friends’ houses, or invite whomever over whenever, or meet up with a friend at a coffee shop with Evan. But that is not what our reality needs to be. Our time in isolation has also made me to thankful for social media. I think it gets such a negative reputation, but man, for mamas like me it is a lifeline. It keeps me sane and helps me feel like I am having human connection when I am confined to the house. So I want to take a moment to thank you, my readers, for being that lifeline for me. For letting me have this space to vent, educate, and share our story.
So many people ask me what they can do to help us since our parenting journey looks different. In regards to this aspect (isolation), there are many ways you can help and be supportive. This goes not only for us but for any other NICU family or medically complex family you know including those whose children are battling cancer.
PRAY. Pray for these families. Isolation can be really hard. The mental component of it is hard on the parents, but the physical aspect is so much more important. Pray for these sweet kiddos that the Lord would protect them from illness.
RESPECT. Respect these families and the boundaries they have set, even if you don’t understand them. Instead of challenging their rules or parenting practices, ask why and really listen. If you do truly listen, you won’t see it as crazy at all.
WASH YOUR HANDS. If you are the lucky few these families can allow into their homes, your first instinct should be to wash your hands before you touch ANYTHING in their house. Piggybacking on this would be to use hand sanitizer often in your visit: chances are you’ll never be more than a few feet from a bottle of it. If you touch your phone (which has more germs than you want to know), use sanitizer before you touch something again.
BE HONEST. If you have even the slightest inkling of the sniffles or any kind of potential illness or you have been in close proximity to someone who has been ill, tell the parents. Let it be their decision if the visit needs to be rescheduled.
DON’T HAVE EXPECTATIONS. Regardless of your relationship to the family, you should never have expectations about visits or what those visits should look like. It is completely up to the parents of the child to determine what they are comfortable with. Many people who come to meet a baby have the expectation that they will get to hold and touch that baby. That should never be your expectation healthy child or not. You are not entitled to anyone’s child. No matter who you are or what you have done to help out the family in their needs. Let the parents be the parents and follow their rules. For example, we do not allow anyone to kiss Evan even if we allow them to hold him. Luckily, our family and friends respect and follow this rule and do not take it personally.
We get to start to venture into the world in May just in time for Evan to turn ONE. Holy cow, that came fast. This is going to be a HUGE transition for us. Evan is still very easily overstimulated, so we will need to take it slowly. This also won’t mean that all of a sudden people can come over whenever and I’ll bring Evan everywhere I go. We can’t go from nothing to everything so quickly. So if you’re local to us or you are in our circle whether that’s family or friends, please be patient with us. I recently talked to my doctor about how coming off isolation terrifies me more than it excites me. I will likely still clam up if someone gets close to my kid in public whether I know you or not. I will not want people reaching for my child or touching him without asking (and washing their hands). I will not be okay with people getting close to his face. I won’t want to have visitors all the time at our house. I will likely say no to a lot of social events still to protect him (and myself) from overstimulation. And I need people to be okay with that because it is okay.
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!