Our Life in the NICU: Part Two

We were blessed. Blessed to know ahead of time that we would be spending time in the NICU. I always told people that, and I believe it. Knowing something hard is coming gives you time to prepare for it. By June, we had truly accepted that NICU life was our normal. This was how we would experience the newborn stage. This is where we would navigate the uncharted waters of parenthood.

Sweet boy with his daddy.

Alex was lucky enough to be able to take six weeks of FMLA when Evan was born, so for six weeks, we spent every moment together. We had never done that in our whole married life. I don’t actually know any married couple, aside from those retired perhaps, who can say that. It was a dream. I fell more in love with my husband in the months we spent in the NICU than I knew possible. We were a team in all things. Alex showed me Christ’s love in ways I had never really experienced from another person before. He sacrificed for me and for Evan daily. He always put our needs above his. He was the quiet strength I needed on my darkest days. Our marriage was strengthened by crisis. This is one of the many gifts the NICU gave us.

My whole heart outside of my chest.

As I said in my last post, June threw us curveballs. Evan was throwing up roughly 30-40 times a day, and honestly, that may be a conservative number. Through all the extensive testing his doctors did to establish a cause, all we could find was acid reflux. “The worst case of reflux” one of his doctors “had ever seen in any NICU patient.” This doctor has been practicing for decades. I told you. Evan is special. He has to do everything in a dramatic, over-the-top manner. We got to the point where we just didn’t put clothes on him anymore because changing his outfit at every single caretime just to change it again five seconds later was irritating him so much that he would throw up even more. To this day, I cannot hear another parent say their child throws up “a lot” or has “really bad reflux” without rudely thinking “you have no idea what acid reflux is.” (I know that each child is different and everyone’s experience is their own. But comparison, that nasty thief of joy, comes at me and leads my mind to these sinful and inconsiderate thoughts. I am human, and I am sorry.) Evan did not gain any weight at all in the first two weeks of June. Our team decided we would place a G-tube, a more permanent way to tube feed that goes directly into his stomach, in hopes that this could relieve some of his reflux since he wouldn’t have a tube going down his esophagus. He was put on the surgery schedule for June 13, a day when, thank God, Maegan would be with us.

In the midst of all of this vomiting, I should mention that we were also working with speech therapy to teach Evan how to suck-swallow-breathe, a combination necessary for eventual PO (by mouth) feeding. He did not have much of a swallow reflex when he was born, so if he had food, vomit, or even spit in his mouth/throat, he would choke, hence all of his desaturations. When Sam, our wonderful speech therapist who we still work with today, would come to work with him he often said “no, thank you” by dropping his sats and turning blue. How rude of him. Thankfully, Sam didn’t take too much offense and stuck with us even though Evan was pretty mean to her during our time in the NICU.

“No pictures, Mom. I don’t feel well.”

Even though Evan was throwing up constantly, dropping his sats often, and turning blue so frequently it seemed like it was for kicks and giggles, we started to get comfortable. Good NICU nurses are ones who teach you how to be calm in chaos, because life with a preemie will be chaos at least for a while even if you go home. We had great ones. Maegan knocked in the cardinal rule of the NICU: If we don’t freak out, you don’t freak out. It took some time for it to sink in, but it did. Martha taught us a second one: It’s okay that it’s not okay. I don’t even know if she knows she did this for us. But it was one of the most impactful lessons I learned.

We now knew what beeps mattered and which ones we could ignore. We knew when to ask for help. We knew Evan well enough to know something was wrong even before the monitors told us. We knew to breathe and stand aside when nurses needed to rush to his aid. We knew that when his blood oxygen was reading 9% and his HR was 31, his God would save him through the hands of his guardian angels. We knew that this would be temporary. We knew that our God is a faithful God who redeems all things.

Waiting for the surgeons to come get him.

June 13, surgery day, finally arrived. Evan wasn’t allowed to get any food until his surgery so he was just getting IV fluids. That was the happiest and calmest day he had had his entire life. No food. No vomit. We were worried he would scream in hunger all day, but he was so sweet and content. Our hearts were equally broken and joyful. Our sweet boy was made happy in hunger. But maybe this is a lesson…our time with a sick child has been a time of intense hunger and need for Jesus, and because of that it has been one of the most joyful. Wow, I am still learning.

We said a prayer as they wheeled Evan away and decided to go for a walk outside to keep our heads clear. We barely made it 20 yards from the hospital doors before we got a call from the surgeon. “There’s been a complication…” I honestly cannot remember everything he said to me on the phone because we were sprinting back towards the hospital. I remember “CPR,” “epinephrine,” “we got him back,” and “we will meet you in B pod.” Our boy was NOT okay. This was NOT the way this was supposed to go. We rushed back into the NICU, and a group of nurses and CNAs were getting all of our things from D pod to move to his new carespace in B pod. You don’t bump back up in the alphabet. That’s not how the NICU timeline is supposed to go.

We stood and watched as they rushed Evan in. He looked lifeless to me. He was pale. He was limp from medications. He had a breathing tube keeping him alive. I remember his temperature was way too low, so they had a heating pack underneath him. I think there were at least six people in his carespace frantically working on him. “They are freaking out,” I thought. “What am I supposed to do?” They drew blood and called out numbers. They ordered blood for a transfusion.

So swollen.

All of this was happening while the surgeon explained what happened to us again in person. You know those risks they tell you about before any surgical procedure no matter how small? How there are things that happen in less than 1% of people, but they still need to mention it? Well, Evan is that less than 1%. His airway spasmed when they tried placing the breathing tube when putting him under. It completely closed. No air could get in. They had to give him epinephrine and do chest compressions to keep him alive and get his airway open again. Once they could place the breathing tube and get his vitals up, they couldn’t risk proceeding with surgery or extubate with him being so unstable. I don’t know if I was stepping up and being the “strong one” or if I was just in too much shock to react, but I just stood there and said “okay” while Alex reacted the way I think I was supposed to. Once things settled, the respiratory therapist pulled a chair up beside Evan’s bed and told me to go hold his hand. He didn’t look like himself. He looked like he had lived a thousand lives since I last saw him just an hour before. Where was my sweet tiny baby? Why did this happen? Where do we go from here?

We stayed late that night. It felt even more wrong than usual to leave him behind as we went home to get some “rest” (you never truly rest when your baby is in the NICU). Maegan had picked a nurse for him that night since he was supposed to be post-op. Her name was Brittany; she would later become our night primary and a dear friend. When we got home, I came undone. Alex held me and kept reassuring me that Evan was okay now. I didn’t believe him.

The next few days were hard. Evan stayed intubated for 36 hours and was so irritable when he got extubated. They had to place a new PICC line for TPN since he was going back to the beginning with his feeds. This was a major setback for him. Not only was he too unstable to reattempt surgery for at least a month, but he also was back where he started in May with his feeding. His doctors came up with an alternate plan. His NG tube needed to go past his stomach into his intestines. This could stop him from throwing up as his food would never be in his stomach. They fed the tube further in and checked it with an X-ray. It was in the duodenum, the first part of the small intestine; he could safely get feeds now. As they weened him down from TPN and up on his continuous ND feeds, something crazy happened. He started to grow. Not only did he start to gain weight, but he also got hair!

ONE MONTH.
Hey, brown eyes.

Things started to turn around. Evan turned one month old, and as a special surprise, on his 33rd day of life, he opened his eyes for the first time! Only for Maegan, of course, that little flirt. But she snapped a picture for us because she knew I would kill her if she didn’t. He didn’t really do it again for a while, so this sweet picture meant the world to us. Just when we didn’t think he could get any cuter!

Now he was growing to be strong enough for another attempt at surgery and beginning to ween his respiratory support.

“You’re allowed to be here now!”

“My ears had heard of you, but now my eyes have seen you.” (Job 42:5) This is one of my favorite verses in the Bible. Job says this after years of tragedy and hardship. He knew God before and even trusted Him, but it wasn’t until he had been in the depths of the valley that he felt he had truly experienced God. True intimacy with Christ can often only be gained after being in the pit, a place where our need is greatest. I have seen the pit several times in my life, and every time I come out more in love with my God despite the outcome of my circumstances. I thought of Shadrach, Meshach, and Abednego going into the furnace when I considered Evan’s life before he was born and there was so much we didn’t know. I thought about them when I watched my son fight his way back from the brink of death on multiple occasions. I think of them now when so much of his future is uncertain. “And if not, He is still good.” A mother’s love is a force to be reckoned with, but God’s love? There’s no comparison. I am not the one who loves Evan most. I never will be. His Heavenly Father loves him with a reckless, never-ending love that I cannot even fathom. So even in the valley, I will trust and praise Him.

Our Life in the NICU: Part One

When I thought about how I would put our 87 days in the NICU into words, I was overwhelmed and stuck. How could I concisely do it justice? How would I convey the emotional and physical exhaustion we felt? How would I adequately explain the medical jargon we have come so accustomed to in a way that would be easy to understand? What if I left out something important and didn’t realize it until days later? What if, in my honesty about our time there, I hurt or alienated our family and friends? These questions are among the many reasons I have put off writing not only this post but this entire blog. I cannot be 100% authentic about our time in a concise manner, sparing no details, in a way that is easy to understand, without ruffling some feathers. It’s just not possible. And that is why these next few posts terrify me to my core. But I am called to be courageous which Brene Brown as taught me means to share your whole story with your whole heart. So here we go…

I needed to divide our time in the NICU into a few parts, mostly for organization’s sake. Today, I want to share about our experience in the month of May. In my last post, if you read it, I took you though May 18, the night I got discharged and had to face the first of dozens of nights that I would leave a piece of myself behind in a roughly 10×10 carespace to be cared for by strangers. Luckily, those strangers became our second family, and I will be forever grateful for them (more on this next week).

Let me start with this: I do not know how women have C-sections and go home with their babies and manage to take care of them and survive. If this is you, you are a warrior princess, and you deserve a medal. C-sections are MAJOR surgery. A 7-8 inch incision is made across your abdomen cutting through muscle and your uterus is LITERALLY ripped open. I could hardly do anything for myself in those first couple weeks. It hurt to do everything. I couldn’t sit up from bed without help. I couldn’t walk without help (and often a wheelchair stolen from the hospital lobby). I couldn’t even get in and out of the shower by myself. Sitting put pressure on my incision…you know, that giant hole they cut to pull a full(ish) grown baby out of. Everything exhausted me physically. Add not sleeping because of anxiety over my child being in the ICU, pumping every three hours to maybe eventually feed my baby, and those lovely night sweats from postpartum hormones and you get a very tired mama.

In our NICU, each carespace has one recliner for a parent to sit with his/her child. If both parents are there (which honestly did not seem to be the norm), you could roll over a computer chair from the nurses’ station. Sweet and wonderful Alex sat in those horribly uncomfortable swivel chairs every day, so that I could at least be somewhat comfortable in the recliner, but even then, sitting was more or less torture. Pretty much the only “comfortable” position in the first couple of weeks after a C-section is lying completely still while mostly flat, but not all the way flat because then your stitches might get tension and that hurts too. So bless it. But we sat. All day. Just to be near our boy and participate for caretime every three hours. Caretime was the only time we could touch Evan. We would change his diaper, take his temperature, and his nurse would reposition him. This may sound crazy to you if you have never experienced the NICU, but it is critical for these babies. A premature baby is not ready for all the stimulation of the outside world, so while a typical newborn can handle and even enjoy being held, played with, and passed around, a preemie cannot. Sleeping babies grow, so Evan needed as little stimulation as possible so he could rest comfortably in order to get big and strong.

That first Saturday, I had a friend drive me to the hospital a couple hours behind Alex because I knew I wouldn’t be able to last the whole day before I was in too much pain to sit there any longer. He texted me when he got there, “Our nurse today is wonderful. You are going to love her.” The next day, that nurse, Maegan, became our primary. Today, she is one of our closest friends.

Evan was waiting on getting an MRI which is difficult to coordinate since the neonatal transport team has to take him down for it and bring him back up AND the MRI had to be available at the same time as they were. In the meantime, physical therapy made their assessment and gave us tips on how to be careful with his sensitive hip joints, weak range of motion in his arms and legs, and easily molded head. Evan’s breathing seemed to be improving, and they even took him off of respiratory support for about a day. He was still getting most of his nutrition though his PICC line which is basically a fancy long term IV. His was a dual lumen one since his seizure medication couldn’t be pushed at the same time as other stuff he was getting. The IV nutrition (TPN) looks like yellow gatorade in its bag, so I liked to pretend Ev was just refueling after working out.

Our first family photo!

We finally got his MRI done and it confirmed that a portion of his brain, the corpus callosum, was only partially formed. It also showed that the gray matter of his brain was underdeveloped even for his gestational age. In addition, he had too much fluid in his ventricles and his optic nerve was small. They looked at his spine too and saw potential issues there that would need to be revisited on a repeat MRI once he was significantly bigger (he is still not big enough). We expected most of these findings based on his prenatal testing. One thing we didn’t anticipate was the fact that Evan did not open his eyes. For a while, we weren’t even sure if he could. We also did not anticipate the gastrointestinal issues he would soon present.

Tiny little prince.
First time wearing clothes! Regulating his own body temp like a champ!

Evan started to receive fortified breastmilk through his NG tube (a tube that runs through his nose into his stomach) in small amounts as they weened him onto feeds instead of the TPN. This is when our biggest hurdle we would face in the NICU began. As Evan weened up to full feeds, he began to spit up. You’re probably laughing at that. “Okay, Brooke. All babies spit up.” Yes, they do, but Evan likes to do things in his own dramatic way. By May 24, Evan was throwing up a lot. That day, we thought it could have been so much due to the stress of moving into a new pod in the NICU (there are five rooms of 12 carespaces each called pods. A-C are for more critical care babies, and D and E are for more “grower and feeder” type babies) and having to get endocrine labs drawn that day (a heel stick every half hour for an hour and a half). That was the only day we had to leave because I couldn’t emotionally handle being there. I couldn’t stop myself from crying, and as we left I just kept telling Alex, “I don’t want to be here.” It is a horrible feeling knowing that you are completely incapable of taking care of your own child–medical needs aside, I couldn’t feed him at all or even hold him without help from a nurse.

Sleepy boy.

The next day, we expected things to improve with his vomiting since he was getting settled and wouldn’t need labs drawn. We were wrong. He seemed to be throwing up even more. Over the next few days his vomiting increased despite the efforts we took to improve it. He was getting probiotics. We slowed his feeds down to a continuous rate, so his belly could never get overfull. We tested his stool and confirmed a dairy allergy, so he switched to a hypoallergenic formula instead of breastmilk. Nothing helped. Evan had gained a half a pound over these two weeks, but that is where he would remain until we could figure out how to get him nutrition since he was throwing up just about everything he ate.

I loved when nurses would make hearts with the tape for his cannula.

These next few weeks would be the most stressful and emotionally taxing we experienced in the NICU. Evan couldn’t stop throwing up, and he had to increase his respiratory support because he would choke on his vomit and stop breathing. Maegan would always tell us, “You guys don’t freak out if we don’t freak out.” But there were so many times in that first few weeks that the nurses did have to freak out a little and hustle to Evan when his vitals would drop. His airway needed suctioning, and he would require the oxygen mask to get his sats up quickly.

It was hard to leave him each night knowing he was miserable from throwing up so much. He would cry his sad, tiny cry, and I couldn’t fix it. I would call his night nurse every night to see how he was doing, and I hated night after night hearing how much he was throwing up or that they had to give him blow by oxygen when his vitals would tank multiple times. He quickly earned his way back to intensive status since he needed to get bumped to a high flow nasal cannula after his worst night of desaturations so far.

Thank God this isn’t the end to Evan’s story. Thank God we did not have to walk this alone. June would throw its own curveballs at us, but our faith would be strengthened, and we would lean into His grace and His peace more than ever.

On the Fifteenth of May in the Jungle of Nool…

I had the opportunity to assistant direct our school musical every year that I taught. Last year, our students performed Seussical Jr., and since our last name is Norton they made many jokes about the our baby being named Horton. It was cute. Because of my pregnancy being a complete disaster for lack of a better way to phrase it, I stepped down from that role early on in the school year, but I still went to rehearsals when I could just to see the kids being awesome. In the first act, there is a song that begins with the title of this post. I will think of this song and those sweet theatre kiddos on Evan’s birthday probably for the rest of my life. My favorite line from that musical (which is also probably the most famous) is “a person’s a person no matter how small.” How fitting for our little nugget of joy.

On May 14, I went in for my weekly blood pressure check and labs to check for preeclampsia. So far I had made it by on the diagnosis of gestational hypertension. They took my blood, and I went on my merry way not expecting to see or talk to them until my non-stress test later in the week. I still had so much I needed to do in order to be ready for Evan’s arrival. The number one thing on my list that day was to finally go back to the school and clear my personal items out of my classroom (with help, don’t worry). When I got everything packed up into my car, I noticed I had a missed call from the hospital. They didn’t leave a message, so I figured if it was something weird about my labs, they would call me back. I more or less just shrugged it off. I had been feeling crummier than usual lately but I was also 34 weeks pregnant, so feeling crummy seemed normal to me.

Around 5:30 the on call OB called again and I answered. She said, “so your labs came back, and we’re going to need you to come hang out with us at the hospital at least overnight.” She then explained that my labs not only showed that I had developed preeclampsia but that I was developing something called HELLP syndrome as well because of it. Basically, my platelet counts were dropping and my liver function was dwindling because of my hypertension. She said that if my labs stabilized and didn’t seem any worse, I would likely go home the following morning, but I needed to be monitored that night. I was kind of dumbstruck. I was so sure that I wouldn’t develop preeclampsia and now I had it and something else on top of it. I dumbly asked her, “so I mean, should I like bring our hospital bag for like having a baby?” (Yes, I definitely said like that many times.) She said, “Yes, you should. Worst case scenario is you leave the hospital not pregnant anymore.” In other words, “hey so I know you were really just concerned with getting your classroom cleared out today, but you actually might have a baby instead.” WHAT!? I calmly said, “okay,” and she explained the process of getting admitted once I got to the hospital. We said, “see you soon” and I hung up.

Then….I said some choice words. My friends, Holly and Ross, were with me so they can vouch for that. I said a lot of choice words unbecoming of a new mother, but I mean she just told me I have a life threatening condition and my already abnormally teeny tiny baby with unknown medical issues was about to be born over five weeks early. You’d have some choice words too! I called Alex, and I think I was calm about the situation on the phone. Honestly, I don’t remember all that well. I know I started it with, “Hey so you can’t run rescue tonight, we have to go to the hospital.” Wow. Way too casual and vague. We met back at the house and finished putting last minute things into our hospital bags and headed out.

When I got admitted, the nurse asked me about contractions and I casually (why am I always overly nonchalant?) told her I had been having them for four weeks, but that I wasn’t having a baby that night. They hooked me up to all the monitors, started an IV, and drew blood for more lab work. Since I was there for my blood pressure, I got to get it taken every 15 minutes for the first couple hours we were there, and then they spaced it out to every hour through the night. Since I might have been having a baby that night, I wasn’t allowed to eat dinner. (Woo! Not.) Around 11 or maybe midnight, they told me I could eat something since my labs didn’t look any worse. That was the best tasting crappy hospital cafeteria cheesesteak sub I have ever eaten in my life.

From the intensity of the situation, I started having stronger contractions than I had been having, so I was so uncomfortable. Between that and the BP checks, I barely slept that whole night. I think Alex slept some, but honestly, I am not that sure. When we “woke up” that morning the dining services people brought in a breakfast tray for me since I wasn’t on restrictions anymore. Our day nurse came in and said that from the report she got that night it looked like we would be able to go home and remain on bed rest getting monitored more frequently. About 30 minutes later, the OB comes in and tells me that she discussed my labs and BP with the high risk maternal-fetal doctors, and everyone agreed that it would be safest to deliver Evan that day.

My internal monologue in that moment: “Ummm…what? Sure. Okay. Cool. Cool. Cool. No big deal. AHHH!”

“Mrs. Norton, when did you last eat?” Ugh. “Umm about 30 minutes ago.” That darn french toast! It wasn’t even good! And now because of it, I had to wait until 3:30 that afternoon to have my baby! I had to just sit there and stress over all the possible scenarios and how everything could play out. Good. My blood pressure isn’t already sky high, let’s just let me stew in my own angst for seven hours. Let’s add stroking out to that list of possibilities.

Evan was breech. Always breech. Folded up like a little taco. I knew we would be doing a C-section, but they checked with an ultrasound just to be sure. She said that Evan would be taken up to the NICU when he was born, but that Alex could go with him. We already knew that was where he would be going. That was one thing we felt ready for.

They told me how the day would go and then said “sit tight and try to relax.” RELAX? Are you crazy? So crazy freak out mode went into overdrive and I sent Alex back to the house because I needed more things including Evan’s swaddle blanket with his name on it. I still laugh at how crazy I was over that blanket, like somehow having it would make everything okay. I knew he would be going into an isolette or radiant warmer with no clothes, but he needed his name blanket. I am the one who needed that blanket. It was a symbol of plans gone right and hope for me. If he had his name blanket, he would be okay. He would live. He would eventually get wrapped in it and be fine. Pregnant logic is the most ridiculous thing in the world– ask any partner of a pregnant woman.

3:30 came…and went. There was another pre-term delivery happening and the OB was stuck until that one was over. So we waited an extra 45 minutes, which felt like 45 days if you ask me. Nerves really started kicking in the closer and closer we got to go time. Alex prayed over me and Evan, and that’s when I finally let myself cry. I told him how I was scared, and I didn’t think I could do it. I’m not even sure to this day what all I meant by “it.” Having major surgery? Being a mom? Having a sick baby? Who knows?

They finally took me back, got me prepped, and let Alex come into the OR. By the way, my blood pressure was 180/111 when they started prepping me. That’s considered a “hypertensive crisis,” so I guess it was a good thing we were about to have this baby. If you don’t know, the only way to “cure” preeclampsia or HELLP syndrome is to end the pregnancy. Evan had to be born that day or we would have been in some trouble.

One second they started and all of a sudden Evan was out. I will never get over how fast it seemed to be. I watched them hand him off to the neonatal team. He was gray. Like not the normal “oh the baby is covered in goo” kind of gray. The “oh shoot, somebody needs to do something quick” kind of gray. I craned my neck to see them working on him. I couldn’t see what he looked like at all. Just a gray fleshy blob. They called out his APGAR score: 1. (It’s out of 10 if you don’t know.) He was only taking random spontaneous breaths. His heart rate was too low; his oxygen saturation was too low; he was gray and not moving. The nurse asked Alex what his name was and when Alex said it, all of a sudden, Evan’s vitals started to come up a bit. He knew his daddy’s voice.

They were able to stabilize him enough to get his weight. That’s when I saw his sweet tiny beautiful little body for real. He didn’t look like a potato! (Let’s be honest…some babies look like potatoes.) He was so cute! And wait! He doesn’t look as disproportionate as we thought he’d be! The NICU team even questioned if they had the right baby when they saw him. He was 3 lbs 15.7 oz. I prayed for at least four pounds! We were so close. As one of our favorite pediatric residents says, we should have just rounded.

This is the first picture Alex sent me from upstairs.

But then as quick as he came, he was gone. They wheeled him out, and Alex went with him. They stitched me back together and wheeled me to the recovery room where I just waited for Alex to come back and tell me Evan was okay. I have no sense of time, since I am pretty sure I was heavily medicated, but Alex came back to show me pictures of him and tell me how nice his nurse was (Hannah, we love you). I told him to just go back to Evan. I would be fine by myself. Evan needed him more than I did. They took me to my room, and all I could do was text Alex. I wasn’t allowed to go up to see my baby. C-sections are no joke so those out there who think it’s the “easy” way to have a baby–you are crazy. I was in so much pain despite the medications they had me on, and my blood pressure was still around 140/90.

The tiniest, sweetest babe.

Hours went by and Alex floated up and down the hospital floors as he divided his time between us until he finally crashed at about 1 in the morning. I still hadn’t been able to go up to see my baby. I guess I wasn’t considered stable enough with my BP and labs still out to check on my platelets and liver function. As soon as Alex woke up the next morning, he went up to check on Evan. The nurse told me I should be able to go see him, but the doctor had to sign off on it first. Finally, at 11AM the day after he was born, I got to go see him for real. It felt kind of anti-climactic when we got up to his carespace because they had just started doing his cranial and abdominal ultrasounds to make sure all of his organs were present and the correct sizes. So I just held his tiny hand and waited so I could spend at least one minute “alone” with my boy.

“Hi. I’m your mom.”

Almost every new mom will gush over that first moment she had with her baby. It was love at first sight. I couldn’t believe I was holding this perfect angel. Blah blah. And don’t get me wrong. I am for it. I love the new mom gooey, warm and fuzzy stuff. But I didn’t get to have that. Not even a little. I barely saw my boy when he was born. Then I had to wait 18 hours longer to see him again and touch just his little hand for the first time. All the while, I was hearing about him having seizures and desaturations. My baby was sick, and I couldn’t do a thing. It wasn’t until the next day that I would be able to hold him for the first time with the help and reassurance of his nurse (Amber, we love you). Holding my baby was rare and terrifying. I couldn’t even do it by myself. I had to have a nurse place him on me because there were so many tubes and wires, and he was just so tiny and floppy. In those first few days, it seemed like every time we held him his vitals would start dropping. If you got to have that moment with your child, relish it. Cherish it. Soak up every precious second of it.

Evan was born on a Tuesday. I got discharged from the hospital on Friday. Leaving the hospital that night was going to be horrible. I knew it. I was leaving WITHOUT my baby. We had prepared for this, I thought. But we barely made it 2 miles down the road before I started bawling my eyes out. I had told Alex I would wait until we got home to cry. Whoops.

Evan was small. He was getting his nutrition through his PICC line. He needed respiratory support. He was on anticonvulsants. He needed extensive testing to assess how to best care for him moving forward.

And I kept hearing that song in my head…”on the fifteenth of May, in the jungle of Nool…” The scene goes on “Horton, the elephant, heard a small noise…. he heard it again, just a very faint yelp, as if some tiny person was calling for help…” Then Horton sings, “…He’s alone in the universe. I’ll just have to save him, because, after all, a person’s a person no matter how small.”

My person was small. He needed help. But he wasn’t alone in the universe. His God went before him, stood with him, and walked behind him. When we couldn’t be there, His eternal Father was.

Evan’s name means “Yahweh (I AM) is gracious.” God’s grace came at us like a hurricane, and over the next 87 days that we spent in the NICU, we drowned in His all-consuming love.

The Three P’s of My Pregnancy: Puking, Pajamas, and Preeclampsia

I have wanted to be a mom for as long as I can remember. Since beginning my walk with the Lord when I was a teenager, I felt more than a normal desire to be a mom; for me, it was a calling. I am certain Jesus has been preparing me to be Evan’s mom my entire life. In retrospect, it is crazy to see the ways He was shaping me all along so He could entrust this amazing little boy to me (and Alex).

Before Alex and I started trying to have a baby, I read every single book, article, and blog I could get my eyes on about trying to conceive, pregnancy, labor/delivery, and parenting. I wanted to do everything “right.” All you seasoned mamas are probably chuckling right now, as you should. Because as the old saying goes, “Man plans; God laughs.”

I think the only thing that went somewhat “according to plan” was being good stewards and making sure we were in a good place financially so I could be a stay at home mom when Evan arrived after my school year ended. He was due on June 20, so the timing seemed perfect. I wouldn’t even need to take maternity leave! How awesome! No docked pay from taking weeks of FMLA. It seemed perfect. Those of you who know our story, know that that is not how things went.

Let’s start at the beginning. After a year and a half of my “healthy lifestyle change” to get in shape and as healthy as I could be to have a baby, we finally started trying. So exciting! Within a few months, we got that positive test. I’ll never forget that night. I remember being so sad that whole week because three different couples announced their pregnancies that week, and I was so sure this month would be another negative test. **Side note: To anyone who has experienced infertility or miscarriage, my heart is broken for you, and I would love to pray for your journey. I cannot fathom the pain you have experienced, and I want you to know you are loved and your worth does not come from a pink line on a test.** We had planned all week to take a test on Friday night so that I would have the weekend to either be super excited or mope in my pajamas. When it came time to take the test, I tried putting it off because I wanted one more day of “maybe” since I was certain it would be negative. When those lines turned pink immediately I lost my mind. I couldn’t believe it. I’m pretty sure Alex was not sure what to do as I was running and jumping around our room like a crazy person. I even got so excited and worked up that I threw up. (Sadly, vomiting is my body’s normal reaction to extreme emotion.)

A baby!
It’s a boy!

By week six of my pregnancy, “morning” sickness hit me full force. I was so sick I could barely get out of bed. That November, I think I took seven sick days because I couldn’t go more than an hour without throwing up. I felt like I was already failing at being a mom because I couldn’t keep myself hydrated or nourished at all in my entire first trimester. Even with medication, my nausea and vomiting only decreased in severity and frequency just enough for me to power through a work day to collapse on the couch in my pajamas every evening. I remember getting so annoyed with people telling me to try eating crackers before waking up, take my vitamins at night, chew gum, eat small meals, etc. I was doing all of that and taking prescription medication, wearing motion sickness bands, and sucking on anti-nausea lozenges all the time but nothing worked. When week fifteen hit and there was no improvement, I was sure my entire pregnancy would be me puking my guts out. I think I was finally able to stop taking Zofran around week 20 of my pregnancy, and things started turning around. Other than the normal aches and pains of pregnancy, things were so much easier! I figured the worst of it was over.

On March 23, 2018, we went for a follow up anatomy scan. I was 27 weeks pregnant at the time. I will never forget how I felt that day. Our OB told us that there were some “abnormalities” on his scan and that we would need to see the high risk pregnancy team for additional scans and testing. We were told that Evan’s long bones were measuring behind and his umbilical cord was missing a vessel which can cause growth issues as well. She told us that we were probably looking at some sort of genetic disorder, but that we may not know the answers until Evan was born. Our main goal with the Maternal-Fetal doctors was to monitor Evan’s health and make sure we had the safest delivery plan possible.

25 weeks!

On March 30, we saw the Maternal-Team and met with their geneticist. She very solemnly told us that our baby was “very small” and that it was difficult to see parts of his brain that should be easily seen by ultrasound at that point in pregnancy. She explained that we could do an amniocentesis to see if Evan had one of the more common genetic disorders, but it likely would just pop up a result of an “abnormality” that would require further testing when he was born anyway. We chose not to do it because the small risk of early delivery wasn’t worth it to us. We knew that no matter what he was our son, and we would do our best to be all that he needed when he was born. A diagnosis wasn’t going to change anything for us. We did do a fetal echocardiogram and MRI because they posed no risk to the baby and could help the doctors have a better care plan when Evan was born.

When I was 30 weeks pregnant, I started showing early signs of labor and my blood pressure was too high. That coupled with Evan’s diagnosis of Intrauterine Growth Restriction and “anomalies” put me on modified bed rest for the remainder of my pregnancy. So I would have to take maternity leave after all. I remember how stressed I was scrambling to make six weeks worth of lesson plans, worksheets, study guides, and tests. I had to modify the assignments I had planned for my students since I would not be the one personally grading their projects at the end of the year. That first two weeks of my “bed rest” may have been the most stressful of my entire pregnancy. Being a pregnant teacher kind of sucks. Being a teacher on maternity leave sucks even more. I never really felt like I was actually “done.” I would get emails and calls from my administrator and other teachers needing direction for my students. I even had to forward several emails from parents to my admin because my students failed to mention to their parents that I was not going to be there for the rest of the year. Bless it.

At this point, I was living in my pajamas watching way too much TV and only really leaving the house to go to my 2-3 appointments every week to monitor me and Evan. I had my blood pressure checked at every appointment (it never went down), and Evan got an ultrasound and a Non-Stress Test every week. It was necessary but exhausting. However, the best part of having a high risk pregnancy is bonus ultrasound pictures. We ended up filling the entire fridge with pictures of Evan before he was born. It was awesome.

I started dilating and having pre-term contractions pretty regularly at about 31 weeks. These are different from Braxton Hicks contractions. They are real and super annoying. For those of you who have labored before, imagine those first few hours of contractions but for four straight weeks at varying intensity and frequency but always there. That was my life. Every morning I set a goal for myself: do not have a baby today. With how small and behind Evan was and with all the question marks surrounding his health, I was terrified to add prematurity into the mix. I needed to keep him cooking as long as possible.

He ALWAYS had his feet in his face.

As much as I hated “going there,” I began preparing myself for all of the worst case scenarios. We were prepared to be in the NICU with Evan especially since it was looking more and more like he would be coming early in addition to his questionable medical needs. We were prepared for having a special needs child. We had no idea what Evan’s needs would be, but we knew his life was not going to look like what we had pictured. I even began preparing for the possibility that I would not be bringing my son home with me. With the information we had from our doctors and all the possibilities for his potential diagnoses, there was a chance that our guy wouldn’t make it. I knew that, and I knew that ignoring that possibility was not going to be healthy for me.

I remember so many people telling me story after story about how they knew this person whose doctor said “the same thing” about their child, and they were totally wrong and had a perfectly healthy baby. I feel like I heard that every other day. And, please do not take offense to this, but if you find yourself wanting to tell someone things like that when they are faced with medical uncertainty, please stop. It is not helpful at all especially when that does not end up being the case for that family. It invalidates the fear and grief that person is feeling and makes them feel like they are not allowed to process. Ignorance is not bliss. Denial is not healthy. I knew our doctors were right. I could feel it in my bones. I knew that this is what the Lord was putting before us. It was not pessimism; it was acceptance.

Aside from the mental and emotional battle we were facing, I felt like garbage 90% of the time. But I was so sure I would not develop preeclampsia even though I was getting labs for it almost weekly. The high risk doctors worked with my OB to determine that I would not go past 37 weeks if I made it that far without going into labor on my own (which wasn’t very likely). Stay tuned tomorrow for Evan’s birth story.

Spoiler alert: I did develop preeclampsia.

Here We Are

Thank you for being here to read along with our story. I have felt compelled to start this blog for a while, but as in most things bold and brave, I naturally cowered for a while. I made it my goal for the New Year to actually get started, and 28 days later here we are. This first post I just want to share my heart behind this blog. I apologize in advance for those who are grammar savvy and like good organization in what they read. This post may make you cringe as I am really just typing and seeing where my thoughts go this morning as my little one snoozes in front of his Christmas tree. I also will likely start and stop writing multiple times before finishing this and every other post because I have a needy little diva who loves his mama a whole lot.

This is our family: me, Brooke, Alex, my husband, and Evan, our little miracle. Our boy is eight and a half months old, and in that time we have experienced joys and sorrows deeper than we ever could have imagined.

Our tiny man has changed us in so many ways. For me, he has given me a new purpose in this life. I spend most of my days fighting and advocating for his health and well-being. But I don’t want to stop there. I want to fight and advocate for other babies like him and other families like us. He is a special baby–in the most simple terms, he is a giant question mark. There is so much we do not know about him still medically. But what we do know is this: he is a miracle. He is a fighter. He is a picture of heaven. His life has radically deepened my faith and spurred me to share truth in as many ways as I can.

I want this blog to be a place of truth. My truth in being Evan’s mama. The truth about who God created him to be. The truth about what it’s like to be a special needs family. I want to educate, answer questions, share joys, share pain. In my new role as a stay-at-home mama, I am realizing how much of a blessing social media can be. Because we are confined to the house and only leave for doctor’s appointments in order to keep Evan safe from germs, the majority of my social interactions happen on my phone and the computer. My hope is that this space will be a way to connect, share experiences, and empower those navigating their way through uncertainty.

I titled this blog Everyday Evan for a reason. The word “everyday” is used to describe normal things. Evan is our normal. He is fearfully and wonderfully made, perfect in the eyes of his Creator. Perfect in our eyes. We love him with a love that cannot be described. This is us. This is our story. Here we are.