Great Fear, Greater God

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

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

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

First ambulance ride…oh, the milestones we keep.

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

Handsome boy.

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

Paci time with Daddy

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

Little mohawk man on the couch with Mama

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

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

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

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

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

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

Little boy, you are so loved.

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

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

Car bed!

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

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

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

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

Being a Not So Stay-At-Home Mom

This was it. My life dream was about to be fulfilled. Me. Brooke Norton. A stay at home mom. As scared as I was to be completely on my own with Evan for the first time, I was excited to enter into this new season of life. Me and my guy, all day, every day. We would read books, sing songs, cuddle, nap (maybe even at the same time), and let’s be honest–watch a lot of Netflix.

Day One: Evan did not sleep at all without needing to be held that first night before Alex went back to work. I assured him we would be fine all night so he could get a good, solid night’s rest. I hadn’t slept more than an hour and a half when he left for work that day, but I was still thriving. I cleaned, kept up with dishes, did laundry, stuck to Evan’s strict feeding and medication schedule, did his G tube dressing changes, and kept him happy all day. When Alex got home that night I think we were dancing to “Brown Eyed Girl” in the living room. It was everything I had ever dreamed. I was exhausted, but I was doing it. I was actually getting to be a full-time mom. So much of our life up to this point felt like part-time parenting which is excruciatingly painful–ask any NICU parent. This simple joy of being with my baby and being all he needed was incredible.

Cuddling whenever we want!

Day Two: Things fall apart. Evan had been congested the day before, and I wasn’t able to get much of anything with the bulb syringe or the electric snot sucker we bought. I called the pediatrician and they said to keep an eye on it and call back the following day if he seemed worse. We had gotten an Owlet Sock for him at one of our baby showers. For peace of mind and to make the transition from constant monitoring easier, we kept it on him all but four hours a day (when it had to be on the charger). It doesn’t alarm like the monitors in the hospital. It won’t go off until the baby’s oxygen saturation reads 79% or lower (normal is in the 90s- preferably the high 90s). Evan’s went off five times by 1PM that day. Something wasn’t right. He was pale and lethargic. He needed to be stimulated to bring his oxygen back up. I took his temperature. 100.5. I knew what this meant, but I wanted it to be wrong so badly. So I called the pediatrician’s office as a last ditch effort to be told something different from what my gut knew to be true–I had to take him to the emergency room.

We lived 40 minutes from the pediatric ER. I couldn’t drive with him so unstable in the back seat this whole way. I called everyone I knew who worked in the medical field to come drive with me to take him in. I was on my last person, and if she didn’t pick up or couldn’t come quickly, I would have to call 911. This was NOT the stay at home mom life I signed up for.

Amy was able to ride with me. While I waited for her to come, I packed up everything I could think of that we might need if we got admitted which seemed highly likely to me. I let Alex know what was going on and told him to meet us there after work. When we got to the ER, Evan’s temperature had spiked to 102.5 and his oxygen saturation was 77%. He was dusky looking at best and barely moving or opening his eyes. They got him on oxygen immediately and waited for the pediatric team to decide if he needed to be in the PICU or regular peds floor. This would be the first of many ER visits for us over the next few months.

When Alex arrived, Amy left, and I let myself cry. The worst part of Evan being sick was that I knew how it happened. I caught a cold the week before and did EVERYTHING possible to keep him from germs aside from moving into a hotel. I washed my hands a thousand times a day, used hand sanitizer constantly, wore a surgical mask so I couldn’t breathe on or near him, limited my contact with him when Alex was home, slept separately from him when possible— the works. But it was inevitable. I blamed myself for us being in this situation. For only making it 18 days out of the hospital before being right back in it.

We got admitted that evening and spent the next six days waiting for Evan to recover and be able to breathe consistently without oxygen. This is what happens when a NICU baby gets a simple cold.

Sick little boy.
Exhausted but so glad to be able to spend the night with Evan in the hospital.

In the midst of Evan recovering from this cold, he also had some other mishaps. He screamed without stopping all night every night that we were there. It was his pain cry (which is actually his only true cry–everything else is just fussing). Eventually one of his doctors figured out that with the malformations in his brain, it was likely that he was having phantom nerve pain, so she prescribed a medication to alleviate this pain. It took a few days to kick in, but it worked! Evan also had his first G-tube button change while we were there. Not scheduled. At 3am one night, the balloon that keeps his button in place busted and his G-tube came out leaking stomach contents all over him and his bed. We had to wait forever for surgery to come fix it. It was miserable, but his night nurse stayed with me for three hours while Evan screamed in both our faces (we love you Loganne). Surgery also discovered that Evan had bilateral inguinal hernias that would need to be surgically repaired as soon as possible. Great….another surgery. Just what we wanted to hear.

Sweet, super pregnant Amber rocking our boy so I could just lie down for a few minutes.

During our stay, I went 62 hours in a row without sleep. Getting to stay the night with Evan was new for us since he had only ever been in the NICU before. It was wonderful but also so hard. Evan’s palliative care doctor had to get Alex to kick me out to go home and sleep. We were lucky enough to have Amber get pulled down to the PEDS floor while we were there, and we more or less demanded to have her as his nurse. Our NICU family was still taking care of us. Several of his nurses, doctors, and therapists came in to see him and check on us while we were there. We also started building our PEDS family that week. The nurses we had that week would become our regulars in our future PEDS visits.

My guys.

Evan was finally weened completely off the oxygen again and was ready to go home with follow up appointments scheduled to plan out his hernia surgery. This discharge was a lot happier than the last. We had gotten used to home and wanted to be back there.

HOME.

It is crazy to think about how chaotic that week was. Anyone who saw me could tell you I was a mess. I feel like I was “that” mom on the PEDS floor who nurses dreaded because I was so strict about Evan’s schedule. Even though I was a disaster, I am thankful for that admission because it helped me find my voice in advocating for Evan’s needs outside of the NICU. When we were on the 14th floor, I often didn’t have to advocate for him because he had a team of dedicated nurses who knew him just as well if not better than we did and loved him so much. They did it for us. Now we were in new, uncharted waters. The 11th floor was just different. Being outpatient was different. All of it is good, but we needed to get used to a new normal (again). I’m happy (and maybe a little sad) to say that we now have a sense of normal and routine in being on the PEDS floor or in going to over a dozen doctor and therapy appointments a month with Evan.

For me, being a stay at home mom has been a lot of being a stay at hospital mom. This was just the first of many admissions we would have in the months that followed. But I wouldn’t trade it. I am certain that God chose me specifically to be Evan’s mom, and I thank Him every day for that undeserved blessing.

NICU: Mischief Managed

We moved back to D pod at the end of July. I had some pretty negative emotions towards it because I hated the three weeks we had spent in there previously, and we had a really good carespace in C pod. We needed to get out of there quick! Or so I thought…

We had been prepared to be parents. We were prepared to bring home our baby, get little to no sleep, feed at all hours of the night, handle some spit up, poopy diapers, you name it. This is what we anticipated the majority of our pregnancy. NICU life was kind of outside of all of that if that makes any sense. Our life there was confined to the walls of the fourteenth floor. Now we were actually getting ready to bring Evan home. We’d be at home, by ourselves, with a baby who had been getting around the clock medical care for the past 80 some days. This was not what we prepared for when we were waiting for our sweet guy to arrive.

I recently read a post somewhere called “Welcome to Holland.” It’s about being a special needs parent. Essentially it says that it’s like preparing for a vacation to Italy. You plan and plan. You learn all the places you want to sight see, book your hotels, plan where you will eat, etc. But when your plane touches down, the attendant says “Welcome to Holland.” This wasn’t where you planned to be. You have to learn all new places to see, book new hotels while cancelling the ones in Italy, research new restaurants, etc. Holland is great. It is beautiful and wonderful, but it is not Italy. This is the sad paradox of being a special needs parent. You are overwhelmed with love and gratefulness for this little life before you, but there is still grace to grieve the life you had expected.

Bringing Evan home finally put me in a dark place. This was it. This was supposed to be the best moment of our lives. It was supposed to be nothing but joy. But, I suddenly was overcome with doubt, anxiety, and fear. What if I can’t do this? What will I do without monitors, alarms, and nurses here? What if something goes wrong, and I am home alone? I spiraled into full blown Post-Partum Anxiety, but by the time I called my OB to get medication, we were too close to discharge for it to kick in before we left. I couldn’t function. Remember before when I said I throw up from any strong emotion? Well, anxiety is a very strong emotion. Every time Evan cried I had a panic attack that led me to vomiting. I could barely eat. I couldn’t sleep.

We were supposed to go home on a Friday. Evan just had to pass his carseat test. Martha tried not to let us be there for it because she knew I would just stare at the monitor the entire time…she knew me so well (and still does). I convinced her to start it while we were still there though, and we left about an hour into it. He passed on the first try! I was SHOCKED.

Every time I called that week during the night, the nurses said “he’s been a little fussy.” Then he would sleep all day. Something felt off to me. His night nurses that week were ones he hadn’t had before, so they didn’t know him or his personality, and we were in a different pod now, so the rest of the nurses in there hadn’t really seen him much either. It wasn’t until Thursday night, the night we were rooming in (staying overnight in a special room for parents whose babies are about to go home) that someone else realized it wasn’t right. Brittany was back that night, and she could tell that Evan’s “fussiness” was not him at all. He screamed from about 6pm-1:30am at least that night. Something wasn’t right. To top it off, I came down with a stomach bug that night (different from my anxiety pukes) and we had to call off rooming in and go home. The next day, to protect Evan from germs, I couldn’t go to the NICU at all. I cried the entire day while Alex sent me pictures, and Amber reassured me that she wouldn’t let them send us home without assessing Evan.

The next day, I was alone with Evan the whole day while Alex went to Richmond for his brother’s wedding. It killed us that we couldn’t both be there, but we couldn’t leave Evan alone especially since something felt wrong. The new plan was to leave on Monday. However, his temps were low that day, and he was having more desaturations than normal, so his nurse asked the doctor to run some labs. They did a septic work up on him. They started him on antibiotics to be safe and they tweaked his feeding schedule a bit to try and help him be more comfortable. We didn’t go home that Monday, because we were waiting on labs and for him to be more himself still. Tuesday night we roomed in again, and things went much better. We got practically no sleep at all, but Evan was more himself. Wednesday morning we would be able to take him home! When the doc walked in that morning, I could see it all over her face. We weren’t going home. His blood cultures came back with MRSA (not at all surprised, but that will be a post all by itself–cue laughter from any of his NICU care team reading right now). They were pretty sure it was just a contaminated sample, but they couldn’t send us home without rechecking. Evan also got genetics labs pulled that morning too that we would follow up on outpatient. The new plan was Friday…again.

Evan and Addie
Evan and Brittany
Evan with Amber and Maegan

Friday came. Alex worked a half day because with all the back and forth, he had taken off too many days. He wanted to be able to spend two weeks at home with us as we adjusted before going back. Addie was working days now, so she was our nurse for discharge. It was so nice having one of his “people” there for this moment. It was even better that his other primaries came in just to see him off. Brittany, Maegan, and Amber all came in on their days off just to celebrate this moment with us. Like I said before–FAMILY. They have loved our sweet boy unconditionally from the moment they met him, and they continue to love and care for him (and us).

Maegan has presented Evan with a sock. Evan is FREE!

I was terrified, but so excited. We put Evan in his “discharge onesie,” and got all the paperwork signed, packed up his things, and got him in the carseat. It was really happening! Maegan even gave him a sock to free him from the NICU. It was such a fun moment.

Headed home!

The drive home was scary, but we did it! We walked Evan around the house to show him his new home (he was unimpressed), and then we just enjoyed being alone. It was surreal. We had a bunch of medications to keep up with and a rigid feeding schedule, and Evan still had his days and nights mixed up. Add in my PPA that was still not alleviated by my medication, and you get a rough transition. Alex was my hero in those first days home. I was still unable to control my panic attacks, and I would have to leave the room often. He took care of both of us that first week home, and I have no idea how he did it. Well, I do. It was Jesus.

Tummy time AKA nap time.

Discharge was such a picture of the gospel to me. I was in my time of most need. Evan is always in his time of most need. And there was Alex laying his life down for us. Sacrificing sleep and sanity to love us in the ways we needed expecting nothing in return.

Our first outpatient appointment!
Evan always looks so snobby. Turning his nose up and side eyeing everything. Still the cutest.

By the end of Alex’s two weeks off, we had tackled more doctor’s appointments than I can count, celebrated Evan turning three months old AT HOME, and kept the baby alive and mostly happy. He still wasn’t sleeping right, but we will take whatever victories we can get. Oh, and my medication finally kicked in, and I felt like myself again.

Tomorrow, I will tell you the triumphs and woes of my first days of stay at home momhood. I’ll tell you this: it’s not boring. That’s for sure. Life with Evan never is.

Our Life in the NICU: Part Three

July was the best month we spent in the NICU. We added more nurses to our list of primaries, and even when our primaries weren’t working, we had more consistency with who would treat Evan. This made things so much better. We had become friends with so many people on the NICU staff that coming in every day felt even more normal than it had before.

“Holding” his paci!

Alex went back to work at the end of June, so I would sit with Evan by myself until he left work. I was nervous the first few days that I was by myself, and some days I just didn’t leave to eat lunch or take care of myself because for whatever reason being there by myself made it harder to leave him. Mom guilt is the worst. It got to the point that sometimes our nurses who knew me well would kick me out to go eat, and somehow they convinced me to get a pedicure one day. These people were our family. They knew what we needed and made sure we would get it. Despite my random days of not taking care of myself, we really had settled into a routine. We chose to find as much joy in our situation as possible.

Baby model.

July was basically a month of waiting for Evan to grow and gain strength enough to undergo surgery again. We played with some of his medications here and there to make him more comfortable, and he weened completely off of respiratory support. That was the best day.

He might be crying, but this is still the cutest picture.
The tiniest, sweetest babe.

We had a lot of fun with the Fourth of July. I decorated Evan’s carespace, and we were lucky enough to be in the best spot for watching fireworks! Maegan even worked a later shift that night, so she watched with us. It was so much fun. Then Evan surprised us on our anniversary later that week with his very first PO feed! We got the go ahead from his docs to attempt PO feeding up to 4mLs. With a lot of help and some patience, Evan took 2mLs by mouth that day! He didn’t do it again until August, but hey, a win is a win.

Excuse the fact that he looks like he got in a fight with another baby.
He will hate me for all the matching outfits when he’s older.
Fireworks!
Sam, our speech therapist, is a miracle worker!

We were so excited to see him finally growing even if it was because we had to completely bypass his stomach in order to feed him. He seemed so much happier as well. Despite the new feeding system and two reflux medications he was on, we still had issues with vomiting. He would throw up his natural secretions which he has a lot of. We added a medication to attempt to decrease these secretions so he wouldn’t continue to vomit and choke on them. It definitely helped, but he was still throwing up some. This led our team to decide that Evan needed drastic measures taken to ensure any future ability to feed into his stomach. He would have a nissen fundoplication surgery when his G tube was placed. This surgery would wrap the top of his stomach around the bottom of his esophagus making it physically impossible for him to vomit or burp. Normally, they do not do this surgery on babies, but Evan definitely needed it, and it has been the best thing for him.

Two months!

Evan still needed to wait a little longer to be big enough to handle the surgery, and the plan was to attempt feeding into the G tube with the hope that the nissen would solve our problems letting him tolerate these feeds. However, we knew that there was a good possibility he would need a G-J tube which would mean at least an additional six weeks in the NICU. We accepted that would probably be our fate as Evan had proved to be quite the troublemaker up to this point. A G-J tube would do what his NJ tube was doing but through the port in his stomach. Unfortunately, they didn’t make equipment for it small enough for a baby Evan’s size, so that could have added even more wait time.

Post bath snuggles!

Meanwhile, everyone we knew on social media kept saying how Evan looked “so big” and “would be home in no time.” I hated that, but looking back, it was mostly my fault. I didn’t keep people updated on the details of his medical care at the time because we were so focused on staying positive and looking for all the joy we could find. But I do think there is something to be said for watching what you say to a NICU parent. Size is not the only thing that a preemie has to worry about. There are so many medical reasons a child would need to stay in the NICU. There are term babies weighing seven pounds or more who have to spend time there for tons of reasons. Later on I will be posting about how to care for a NICU family, so I will stop here for now.

Holding him every day was the best part of the day. It was so short sometimes and some days not even possible. We’re still catching up.
Evan loves The Office. It’s his favorite show.

We finally made it to the week of Evan’s second surgery attempt. They planned to intubate him up in the NICU ahead of time to have as many people present and as controlled of an environment as possible. Alex called me on his way from work that night which wasn’t normal for him. He had been in a car accident and was being taken to the ER downstairs as a trauma alert. Cool. Just what we all needed. I told Amber, one of our day primaries (thank God she was there that day), that I had to go downstairs to meet Alex and see what was going on. His truck was completely totaled, but luckily he was fine– just some bruises and muscle soreness. I think I had been holding my breath until I saw him. Still, this was not how either of us envisioned the night before the scariest day of our lives going. The team in the ER was incredible though. They knew our situation so they got Alex discharged as quickly as possible so he could come up and see Evan before we had to go home to sleep.

Surgery day!

I think I called to check on him at least three times that night. It was to the point that I remember Addie (one of our night primaries) told me to just go to sleep. I love her. The next morning Amber texted me once he was intubated so we wouldn’t come and have to get kicked out for it. That would be more stressful. He did great. That was the scariest part of this surgery given all that happened with his first intubation in June. God bless that NICU team and our anesthesiologist (she’s the only person we will allow to put Evan under). The time came for them to take him down. Alex and I prayed over him, and they wheeled him away. I had never felt so scared in my life. I immediately started crying and Amber gave me a hug which made me feel at peace so quickly somehow. I told you–they are our family. We now had about three hours to wait for him to finish. I forced myself to fall asleep so it would go quicker. They brought him back up and told us that it went great. Now we would just need to monitor him, keep him comfortable, and wait for a safe time to extubate him.

Sweet, brave boy.

We were able to extubate overnight that night, but he was struggling so much with pain management. He ended up needing two different narcotics to stay even remotely calm. I felt so bad for him. Post-op is definitely worse than waiting while he is in the OR for me at least. I hate seeing him in so much pain knowing I can’t do anything to help it and that he doesn’t understand why it’s happening. He had four incision sites plus the G-tube port that were all tender. I was afraid to touch him because I knew I would make it worse. After a few days, we were able to decrease his pain meds significantly. But then he started having bradycardia spells with his oxygen desaturations. Super fun. These thankfully stopped at five days post-op.

The first time we ever got to see his face without anything on it! He is so handsome.

We started attempting to ween him onto feeds into his G-tube. Within a week, he was at full feeds and was tolerating them! It felt like a miracle. We would not need the G-J tube! He was doing so well. He wasn’t throwing up and choking all the time. He seemed truly happy for the first time in his whole life. It was like we had a whole new baby.

First crib ever!

We were quickly learning how to care for Evan’s G-tube and getting ready for managing it at home. All of a sudden people started throwing out worlds like “discharge” and “home” to us. It had felt so far away, and now it was actually getting close. I honestly didn’t believe Amber when she first told me we might go home soon. Then I panicked over all the stuff we needed to do to be ready.

Tomorrow, I will tell you all about the emotional roller-coaster that discharge was for us. If you’re one of Evan’s NICU peeps, you are probably laughing right now remembering it.

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.