Goats in the Desert

There is this billboard I used to pass all the time between Roanoke and Franklin County. It is famous for having goats that just climb up onto the ledge to warm themselves up with the lights shining on the sign. I honestly couldn’t tell you anything that has ever been advertised on that particular sign. I just know that every time I pass it, I look for the goats. For the longest time (over three years of passing it), I never saw the goats. It got to the point where I started to consider this was all an elaborate prank like when you tell the freshmen there’s a pool on the roof of the school. Seeing the goats on this sign the first time felt like a miracle. I was so excited. It was real. Now, every time I see them, I smile. It’s just a fun quirk of where we live.

I was driving back from an event in Franklin County a few months ago, and I remember seeing the goats. I smiled as usual, then I really started thinking about them. How they felt so elusive. How seeing them felt like a special treat. How there were times I doubted their existence.

I think we all get like this at times with Jesus. We go through seasons where He feels far away. Where we don’t see a way out of our situation. Where we feel forgotten, left out, abandoned. We moved away from what we knew. We quit jobs, started new jobs, joined a new church, made new routines, etc. So much of this last year and a half has felt like an uprooting. Typically, I lean into it. I love change. But throwing so much new and different into the mix at once was hard especially when we were (and are) so limited in what we can do outside of the house with Evan. But then, I thought about the “goats” Jesus has placed before me in this season of parenthood.

God gave us a church family that immediately welcomed us in and seeks ways to make church a place for all three of us to worship and stay safe and healthy.

God gave us new friends who feel like family and understand what life has to look like for us in this season.

God gave us amazing home health nurses who allow us to be active in our church, run errands, go on the occasional date, and rest without worrying about Evan.

God gave me virtual friendships with other medical mamas that are so dear to my heart. Having friends who “get it” are so important.

God gave me this blog and social media as a platform to share Evan’s story and how we’re experiencing Jesus in it.

God gave us other blogs, podcasts, and social media accounts from those who walked before us in this journey– people who will likely never know us and how their honesty and stories have impacted our hearts.

God gave us encouragement through messages from old friends, family, and even strangers when we have needed it most.

God gave me a sweet reunion with a friend here in the coffee shop as I typed this post.

God gave us the best boy with the best smile to remind us of His goodness always.

God has given to us so much. But we had to look. I would have missed those goats if I hadn’t been looking for them. If I stopped looking at the billboard, I never would have seen that they indeed were real. If you’re winding down a lonely road, unsure of the reality of His promises, unsure of if He’s even there, don’t stop looking. Your goats are coming. Hold on.

“Look at the nations and watch—
    and be utterly amazed.
For I am going to do something in your days
    that you would not believe,
    even if you were told.”

Habakkuk 1:5

Home

When we moved to Roanoke after Evan came home from the NICU, we knew we needed to rent for a year. We had to move fast, and we couldn’t show our house with Evan still living in it. So we did rent and a mortgage for four months while we finished moving and listed our house. The goal was to find a home that would work in terms of accessibility for Evan, leave room to grow our family, and be close to our church and the hospital.

Our dream wish list for a home was kind of ridiculous. We had the things we dreamed of before Evan joined our family. We had the things we dreamed of for other potential children. We had the things we now needed to make life accessible for Evan. We had the things we dreamed of for Evan–not needs, just dreams. In a perfect world, we would find a house that checked off every item on that list and come in under budget. If you’ve ever bought a house, you’re likely laughing at this point. Compromise is almost always the name of the game when buying a house. You weigh your wish list and decide which things you can’t budge on and which things you can decide to live without. We fully expected that to be the case. We also expected the search to be long and hard.

We started looking in the spring knowing we wanted to move by the early fall when our lease would be up. It was hard. I remember Alex telling me about talking to a coworker about our house search. He told this guy about houses we’d looked at and why they wouldn’t work for us, and his coworker was just blown away by how many things we had to think about when looking.

Will a wheelchair fit around this corner in the hallway? Are these door frames too narrow? Is there a first floor bedroom Evan can use? How will we get him in and out of the house when he’s bigger and still not walking? Is there space for his equipment? Will the oxygen tubing easily make it from where he sleeps to where he plays? Can I see and hear him easily from the kitchen? Is the neighborhood too “busy” for him? Will we have to constantly deter neighbors from trying to see the baby to protect him from germs? (Everybody loves a good baby.) Is there space to build onto the house if needed down the road? Are we close enough to the hospital? Where’s the nearest rescue squad? Is there space to add ramps or an elevator? Is the house old enough to make us question the air quality? Is the house new enough that we know we won’t have to worry about replacing major things like water heaters or the roof for a while? The list probably could go on…

Meanwhile, we had our own dreams. Of course we were willing to compromise on our wants to make sure Evan got his needs, but it wouldn’t hurt if a house had at least some of those things right?

Nothing was meeting our list or even coming close. The houses that seemed possible came with huge renovation needs or the clear need to move again in a few years. We didn’t want to settle. We prayed for the right house to come on the market.

On a Wednesday night, I was scrolling through the listings on Realtor.com as I usually did every night just seeing if anything new came up that could work. There it was: a house exactly like I had always pictured us living in one day. From the outside it looked incredible. As we clicked through the pictures posted with the listing, we fell more and more in love with the house. I told Alex there was no way we would get it, but it was nice to dream for a night. We both agreed it was perfect. That is probably why we were so convinced we wouldn’t get it. Too perfect. There was just no way.

HOME.

I talked with our lender and realtor the next day. It was possible. We scheduled a showing. As we drove up to the house, I really felt like we were coming home. We walked in the front door, the first thing I saw was a big wooden sign above the mantle that said “His grace is sufficient.” The whole time we were looking, I thought “Okay, God will provide. We just need to trust Him.” I really felt in that moment, that He was saying “Here it is. This is the home I picked for you. I went before you as I always do to prepare the way.”

We wrote the sellers a letter with our offer. We wanted to explain why this house was perfect for us. We told them a little about Evan, his needs, and how the house could help make his life easier. I shared our heart behind wanting this house. Why we felt so at home. Maybe they would think we were crazy weirdos, but I knew we had to tell them. Our offer wasn’t competitive. It couldn’t be. This was a risk, but we trusted.

They accepted our offer and shortly after, I got a message on Facebook from Heidi, one of the owners. She used to be a NICU nurse in the NICU Evan spent his first three months of life. She worked and her kids went to the school we want to send Evan to for preschool. We had so many friends in common. But most importantly, this family loved the Lord. That sign above their mantle wasn’t just a decoration. It was truth they lived by. Here are her words:

“We are the family that lives on [road we live on], and your letter to us was such a special gift from God. We have been praying for the family that would buy our home. We wanted them to love it as much as we do, and we prayed it would be a blessing to them. We built our home thinking of our family’s needs, but our faithful God also saw fit to allow it to one day meet your precious family’s needs. I can’t get over how much He is in the details. I was a NICU nurse for 17 years in the place that Evan spent his first months of life. I worked alongside many of the nurses that cared for your beautiful boy. What a treasure it is when God shows us over and over that He sees us and knows us.”

When we moved in, the sign was there on the mantle for us: a reminder of His goodness and provision. I see it every day and think of this sweet family and how their obedience and faithfulness to the Lord has blessed us.

His grace is sufficient, indeed.
The Tate Family

We’ve been in our house now for several months. We’re slowly making it our own, but I love the reminders of the Tate family scattered through the house. They will forever be a part of our story–His story.

Yes, a house is just a building. And we do not idolize our house. We love it for sure, but its reminder to us of His sovereignty is why we are so blown away by this move.

We have two master bedrooms: one on the main level and one upstairs. Evan will keep the downstairs master as his bedroom. It makes it easy on days when he needs his oxygen all day. The tubing reaches from the machine easily into the living room which is big enough for Evan’s toys, high-low base for his chair, and stander. Everything is open on the main level, so I don’t have to worry about Evan if I am in the kitchen getting meds, prepping a feed, or pouring coffee. The first floor master has a huge bathroom that we can easily renovate when Evan gets big enough to need a handicap shower. We also see the potential space to put an elevator in for him. We can enter the house through the walkout basement and take the elevator straight into his bedroom. There is space to build a large garage in the future. There is space in the basement to let Evan scoot around on a makeshift “belly cruiser” so he can learn to crawl. There are spaces for both Alex and I to enjoy our hobbies without cluttering the rest of the house. There’s a big yard we can enjoy and build an “all abilities” swing set on. There are just so many things to love about our home. Isolation during cold and flu season requires us to be in the house A LOT, so loving it is kind of important.

But, my absolute favorite thing about our house is the view. We get to see the beauty of God’s creation magnified right from our windows.

Not a bad place to enjoy a cup of coffee.
Evan appreciates the view too.
When Ev needs a little fresh air, we can easily go for a walk around the yard. He loves looking around and being on the move!
Our first snow in our new house!

I cannot wait to see what the Lord does in this house. I cannot wait to witness His provision, faithfulness, and glory unfold before our eyes.

“Lord, you are my God;
    I will exalt you and praise your name,
for in perfect faithfulness
    you have done wonderful things,
    things planned long ago.”

Isaiah 25:1 (NIV)

The Cold Cup of Coffee

I picked up my coffee this morning, and it was cold. No surprises there. Some days are measured by the number of times my cup finds its way to the microwave. I know I am not alone in this.

I use the Marco Polo app to talk with other mama friends, and I think the subject of cold coffee or microwaved coffee comes up at least twice a week. As moms, we laugh because this is just another part of motherhood.

But this morning I got to thinking about this cold cup. I thought, what does it really represent? And Jesus spoke.

This cold cup of coffee is about sacrifice. The cold cup is a baby fed, a tantrum soothed, medicine given, diapers changed, boo boos healed, books read, imaginations fostered, and the list goes on. The cold cup is our children’s needs above our own. The cold cup, my friends, is the gospel.

Jesus laid his life down for us. He made the ultimate sacrifice so that we could be healed and reconciled to God. Matthew 20:28 says that Jesus “did not come to be served, but to serve, and to give his life as a ransom for many.” When we allow our cups to grow cold, we are living the gospel. We are following Christ and loving others (our children) the way He loves us.

So the next time you find yourself grumbling over your microwaved coffee, I challenge you to see it as a reminder of His grace and goodness. He says to you, “Well done, child, I am proud of you.” And goodness, how badly do we need to hear that each day?

2019 in Review

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’s Health

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.

Our Family

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.

Business Ventures

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!

Dear NICU Mom,

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

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

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

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

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

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

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

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

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

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

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

“Rabbi, who sinned, this man or his parents, that he was born blind?”

Why?

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*

Why We Isolate and Why It’s Okay

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!

Chunky man at the doctor.

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.

Playing with his toys in the living room.

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.

By the way, these things make your face so hot. I also should mention that I cried and had multiple panic attacks about the possibility of Evan catching a cold from me (when I was 75% sure it was allergies anyway).

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!

I took this image from the Synagis website. Please click here for more information!
Another infographic from the Synagis website. While Evan was technically born at 34 weeks and 6 days gestation, he was only developed to that of a 30-31 week baby.

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.

This is what exposure to germs looks like for my kid. Bronchiolitis followed by pneumonia and an inability to wean off of respiratory support thereafter.

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.

“Don’t touch me, you peasants.”

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
Looking longingly out the window. I imagine he’s singing “Part of Your World” in his head.

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.