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Lewis’ NICU Story

To our son Lewis, may you always know the miracle that you are and the immense love that we have for you

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***Doctor names and nurse names are intentionally left out for their privacy.

This post is continued from post “Lewis’ Birth Story” https://justbrit.com/2017/05/14/lewis-birth-story/ This story picks up from after he was born, when I was wheeled to his bed to see and touch him for the first time…

Mixed emotions as I laid there in my bed straining out to touch him. So tiny, so fragile. I felt guilty. Guilty that he couldn’t have the environment he needed to thrive. Sad that he had no warm body to lay against. I know I should say I felt overwhelming joy and chorus of angels, but it wasn’t like that for me. It broke my heart that he should have to fight for life this early in life, it wasn’t fair to him. But did I love him, yes, with all my heart.

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I got taken back to my room, where I had leg massagers placed on my numb legs to increase circulation and ample amounts of pain killers. Did this really just happen? I placed my hands on my stomach, wishing him to still be there… Ed came to the room and showed me more pictures and said the nurses are really eager for a name for the baby. He had told the nurses we were thinking of Sanford or Lewis, and they all thought he looked like a “Lewis.” We decided then that it was to be Lewis Bennett Jessop. The name Lewis coming from a dream Ed had had several years back about a baby boy that we had. The name Bennett was from a name Ed had seen while visiting the Temple.

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My OBGYN Doctor came in to our room. Checked on us briefly, then told us goodbye and that he was leaving for Hawaii with his family that night for the next two weeks. And with that he left. I looked over to Ed who was seated by my bed… “Did you know he was going on vacation?” my voice cracked as I started to cry. I was hurt. Ed, matching my emotions, responded that no he didn’t know that either. Was that why he didn’t let me try for a vaginal birth? Because he had a personal timeline to meet? He knew I wanted a VBAC (a vaginal birth after cesarean), he was a VBAC Dr. after all, he knew the baby was still kicking and not in extreme peril and small enough to deliver. Why didn’t he just transfer me to the neighboring vbac doctor? Or better yet, why didn’t he tell me he was leaving, so I could contact the other VBAC doctor? I wasn’t just hurt, I was angry, even so much that the tears kept flowing. At least if I delivered vaginally I could have been at Lewis’s side instead of being currently immobilized from my cesarean. This cesarean I knew would make things a lot more difficult in our upcoming NICU journey, knowing full well I’d be having to make daily drives up to the hospital since they had no over night accommodations. Plus it was winter, icy, and my house had stairs, I had a toddler to run after, etc, the list flooded my mind. But, what was done was done. I couldn’t change anything. I tried my best to put it aside for the moment. But let me just say here, as I write this one year later. This situation has caused me months of pain, months of depression and tears, months of prayers, months of exercise, months of counseling, months of medication, and money spent to overcome this. But that will have to wait for a different post…

My parents, who were in the waiting room with Emilie during delivery, came in.

Ed held Emilie by my bedside as he showed her pictures of her baby brother. I watched her confusion with aching grief, not knowing when she’d actually get to see him in person. No one under the age 16 was allowed to go in the NICU… But she was sweet as she watched the videos and touched his face on the phone screen.

After going in with Ed to see Lewis, my parents took Emilie to our home for bed. They would continue to bring Emilie back and forth for the next 3 days hospital stay.

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I was told that I could go back and see Lewis as soon as I could get out of bed and the numbness gone. While I waited I pulled out the breast pump and got to work.

A couple hours later, at midnight I managed to pull myself out of bed with help, and Ed wheeled me down the hall to the NICU in my wheelchair.

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Ed and I both put our hands through the little porthole windows of the isolette (incubator) and placed our hands gently on him. Curled up on his side Lewis’s eyes blinked slowly open and close as I spoke to him. He recognized my voice, I smiled. My heart raced every time I heard his unfamiliar monitors and alarms go off every other minute. A sound that I would grow more accustomed to.

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Back and forth, I went from my bed to his bedside, still wishing that I had birthed vaginally so that I could easily remain closer to him and not worry so much about my own recovery.

Somehow the next day came. A new shift of nurses was there and I had to double take as I recognized one of the nurses was from my church! Sweet tender mercies. She was even our personal Nurse that day and told me I’d be able to hold Lewis later that afternoon, my heart leapt!

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Afternoon came, and I got situated on a recliner by the isolette as our Nurse lifted our baby and several wires and tubes out… He was quickly placed on my bare chest, blankets placed on top of him and then stillness. Quiet. It was just me and Lewis. Finally feeling his warm little body, his quiet breathing, his tiny heart beat. It was so surreal to me how small he was. At this point he was so fragile to me, I worried about every movement I made and every touch I gave him. I was scared. I felt inadequate, inexperienced. As the days past I would learn of his actual strength and determination. And a year later I am now able to see my own strength and determination. Ed and I were left to ourselves. There was a little Christmas tree in the room’s corner and I couldn’t help but sing Christmas songs to him. I don’t remember how long I got to hold him, but at this early of stage they monitored his holding time (being out of the isolette) very carefully. But every time seemed too short. Ed was able to hold him the next day too. We were able to hold him once a day for the next 3 days stay at the hospital.

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I’ll just take a few lines to explain how the routine goes in the NICU. Every 3 hours Lewis would be fed with my milk, plus supplements for extra calories, through a tube placed through his nose down to his stomach, termed ‘Gavage.’ At these feeding times, either Ed or I (or the nurse) would change his diaper, check his temperature and then hold and cuddle him while he was being fed through the gavage. Eventually the gavage would be taken out once he had learned to drink from a bottle/nurse for his feeding times. These feedings would tire him out and he’d pretty much sleep until the next feeding, where we would do the whole processes over. As he would grow and get better, our holding times increased to multiple times a day, instead of just the once.

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IMG_3815At the back of my mind was the daunting realization that my hospital stay would soon be coming to an end. That Lewis would be staying and I would be leaving without him. That my parents would be leaving for home and we would somehow be parents to these two children at two different locations. And that day came. My parents left in the morning. Ed and Emilie came to pick me up that night. I remember packing up my hospital room and sobbing, knowing what was coming. It was already tearing me apart. I said a tearful goodbye to a sleeping Lewis and headed down the elevator with Ed and Emilie, out to the car, and home. Leaving him was the hardest thing I had ever done. I don’t remember when the tears stopped or if they even did that night.

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Being at home was hard. During the lonely nights, I’d wake up to pump, call the nurses several times to check on Lewis. Waking up every 3 hours to pump was hard. I don’t know what it was but pumping this time around was extremely painful. For the first month straight, every three hours I would have to count to 3 several times, brace myself, turn the pump on, and cry because of the pain. And then my tears would turn into missing Lewis and wanting to have him with me so badly instead of these plastic parts… Often times it turned into the ugly cry, you know the one where you can’t control how you look or sound. To give an example, I’d wake up at 2:00am, pump for 30min, clean the bottles, store the milk, go back to sleep at 3:00 and then do it all over again two hours later at 5am. Ed was so supportive and would always have me wake him up so he could wash the pump parts and I could head to bed. A lot of the times I did wake him up, but a lot of the times I just let him sleep.

IMG_3439We were in a pretty unique situation here. Since Lewis was born during both of our finals week, yes that’s right, finals week, that meant the next three weeks were Christmas break for Ed. And I was definitely going to be taking the next semester off. Ed also worked at the University, but since there was no school, they did not need him for those three weeks either. So Ed and I managed to make visits frequently. Sometimes we’d all go up to the hospital and switch on and off with Emilie in the play room. Other times, one of us would go up, come back and the other would go up. And the sweetest thing of all was my dear next door neighbor, my best friend, would call up and specifically ask, “what time can we watch Emilie today?” I loved her so much for saying it this way instead of “do you need us to watch Emilie today?” This way Ed and I were able to go up and be with Lewis together.

IMG_3427The first day home, Emilie got sick. The cold symptoms then brought on an ear infection and a sleepless toddler. High stress and no sleep, I knew our immune systems were shot and that it was only a matter of time before one of us got her cold too. And we did, Ed first. And then the following week I got the cold. They still let us in to the NICU. We would wash and sanitize the same as we always did upon entering but on top of that we’d put on a clean scrubs they provided, gloves and mask.

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This cold made waking up at night to pump even harder. But yet I never missed a pumping session. I’d even time my NICU visits to where I could pump at his bedside beforehand and give him fresh milk for his feeding. I don’t know how I made it through. Ed had the cold for two weeks and I thank goodness had it for only a week. Emilie was over her infection by then. Lewis never did catch this cold, which I was eternally grateful for.

Christmas was on pause. Every gift I intended to give was never given or even bought for that matter. Every baked good I intended to bake never got baked. Every craft I wanted to do with Emilie never got crafted. Every concert, party, event, just didn’t happen for us.

The winter of 2016/2017 in Pocatello was the worst they had seen in 20 years. No joke. Our 10 min drive to the hospital ended up taking us 30 minutes some days, through snowstorms, unplowed roads and/or black ice. To top it off, I was driving up to the hospital one day and while pulling up to a stop sign the breaks went out in our van. I remember slowly drifting into oncoming traffic screaming and praying out loud, “GOD PLEASE NO!” I came to a stop a few feet past the stop sign, far enough on to the 4 lane main road for people to honk and swerve around. I reversed, thanked God and just cried. I remember being so hurt by the people who honked, thinking, if they only knew what I was going through… Off to the shop our van went. We had another vehicle thank goodness, but it wasn’t winter prepared at all. While we are on this topic, our steering went out a few weeks later in the same van. Go figure. Did I also mention that Ed got his Muck Boots stolen too? If you know what Muck Boots are, then you know the price of them as well…

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The weeks before Christmas Lewis didn’t seem to have any problems. I was so relieved; maybe this would be a fast journey in the NICU after all. Although before we could take him home he had to meet three qualifications. He had to be able to breath on his own, regulate his own body temperature and be able to eat on his own. At that point he hadn’t had success with any of those things unfortunately. And so the tubes and wires remained. Although it was so wonderful when bath time came around for Lewis. All probes, wires, stickers, cannulas and tubes were removed and it was during those times that the NICU would disappear and it was just a Mom and baby enjoying bath time.

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It was Christmas weekend. It didn’t feel like it but it came, just the same. My brother Chase came and stayed with us and watched Emilie while we visited Lewis for longer stretches of time. I remember Christmas Eve, holding and singing to Lewis, “I’ll be home for Christmas,” contemplating how the song was written for soldiers over seas who longed to be home for Christmas, “I’ll be home for Christmas… If only in my dreams.” Lewis, my little fighter.

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Christmas morning came, it was sweet to see Emilie’s excitement as she opened presents but bittersweet all the same. When my parents had come down weeks before for Lewis’ birth, they actually brought presents already wrapped for everyone and placed them under our tree. I was so grateful.

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We all went up to the NICU together. Chase stayed with Emilie at the floor’s playroom, a familiar and comfortable area for Emilie at this point. Entering into the NICU we were surprised with a handful of Christmas gifts from anonymous donors. To know that people were thinking about us was so sweet. The nurse assigned to us that day wondered if Emilie had “seen” Lewis yet, to which we responded that she hadn’t, she was too young and didn’t meet the NICU age requirement of 16. The nurse then proceeded to grab an oxygen tank and said we could hook him up and take him to the door for her to look through the window at him. Best gift ever! I was so excited. My brother, Ed and Emilie were waiting outside the NICU doors. I carried a swaddled and awake Lewis, while a nurse held his tubes, wires and oxygen tank besides us. Ed was holding Emilie and through the door’s tiny window I held Lewis up for her to see him. She smiled and pointed at him, “Look at his little nose! He’s so cute!” It was precious and just what our hearts needed that day. Loving nurses crowded around to witness our special event.

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Later that day our neighbors had us over for Christmas dinner. It was nice to feel like real humans again, doing real human things. Ed and I put Emilie to sleep and headed up to the hospital again to spend the rest of Christmas day with Lewis.

And that’s when the best day turned into the worse.

Nurses were crowded around Lewis’s isolette. When we approached, one nurse looked at me and said apologetically, “It’s bad.” Immediately I began thinking, it was my fault, we shouldn’t have taken him to the window, but she kept assuring it was nothing that any of us did. Lewis’s digestive organs had become severely bloated. Which prevented anything from going in and going out. A halt like that on a preemie’s system is not good. I was terrified. They had us step out while they gave him an x-ray. I sent a rushed text to my Mom saying that “Lewis took a turn for the worse, please pray.” She forwarded it on. My brother messaged us to stay there as long as we needed and we did. While Lewis’s Dr. and nurses were looking at the x-rays Ed went to find some men from our church who worked in the hospital who could participate in a healing blessing for Lewis. While I waited, I drew the curtains around Lewis and I, collapsed on my knees and sobbed and pleaded with Heavenly Father that he would take this away from Lewis, to give it to me instead…”

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Ed returned with two other men, who we didn’t know, but they were so kind and willing to help out. They all proceeded to lay their hands on Lewis’s head through the isolette walls and Ed offered a blessing of healing.

We stayed for hours, long into the night… the staff advised us to go home and rest and call in for updates. It was hard for me to agree, but I finally gave in. Exhaustion was an understatement.

Over the next few days Lewis slowly progressed. Thanks to the constant care and input of the his NICU Dr. and nurses. We had survived the first hurtle. I finally understood why they always spoke about NICU stays being ‘one-step forward, two steps back.’

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IMG_0167During this time they had also discovered that Lewis’s PDA hadn’t closed. (“Patent Ductus Arteriousos: An unclosed hole in the aorta. Before a baby is born, the fetus’s blood does not need to go to the lungs to get oxygenated. The ductus arteriosus is a hole that allows the blood to skip the circulation to the lungs. However, when the baby is born, the blood must receive oxygen in the lungs and this hole is supposed to close. If the ductus arteriosus is still open (or patent) the blood may skip this necessary step of circulation. The open hole is called the patent ductus arteriosus (American Heart Association).” It definitely felt like another step back to hear this…

IMG_0153IMG_0128There were several options, one was we could choose surgery and close it; another was to see if it would close with time. Lewis’ Dr. recommended waiting it out a bit first. I loved this NICU Doctor so much. She was extremely smart, kind and empathetic. Her presence always put me at ease. Along with all my NICU nurses. I feel like I can’t ever repay them, but yet I try to as much as I can! That was another thing nobody ever prepared me for was how much I would miss these Nurses after everything was said and done. Even till this day I remember their names, their voices, their smiles, their hugs and our conversations.

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IMG_3774By the middle of January we enjoyed another visit from my Mom and Ed had resumed his Masters Program and his work. So we juggled and organized our schedules as best as we could. His work and school were very accommodating to our situation, which was immensely helpful. I just have to mention that the NICU staff loved Ed. On multiple occasions a few people thought he worked there, because he was up there so often and knew what he was doing. Needless to say they were impressed with him, I too was impressed with him. He managed his time so well.

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So here we were, a few steps back again, trying to get those three qualifications so that Lewis could come home. We also had started to bottle-feed. Which was extremely hard for him. There would be desaturations in oxygen frequently and the monitors would go off while he tried to drink. He had the hardest time getting the pattern of swallow “then” breath. Every week he regulated his temperature a bit better though. And a few times we attempted removing the nasal cannulas, only to place them back on again. We even were able to put him to my breast at least once a day; sometimes he’d do great, other times it was like he completely forgot how to nurse. Finally his temperature reached the ideal for him to move to an open crib. But he still had his oxygen cannulas. We removed them again and it seemed like he was taking it well so the next day we moved him to his open crib. It was a big deal. Watching them wheel his isolette away was so encouraging for all of us. Being able to touch Lewis freely without the walls of the isolette inbetween us was so wonderful. We were close to going home. Or so I thought…

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IMG_3857I was finally going to try to make it to church after 6 weeks, I put a skirt on, did my hair and makeup. Ed went to the first hour of church with Emilie in the morning while I ran up to NICU. No one in the NICU had see me with makeup or my hair done for the last month I’m pretty sure! Something felt off as I walked towards a motionless Lewis in his open crib, call it Mom intuition if you’d like. He was silent, his is eyes were partway open, his face pale. If the monitors hadn’t been showing that he was alive, I would have panicked even more. I placed my hand on him and talked to him. His eyes moved in recognition under his partially opened eyes. A new nurse, whom I had never met before, came over to me. I asked if he was okay and she proceeded to tell me that two times within the past few hours that Lewis had stopped breathing. They hadn’t called me because they knew I’d be coming in this morning and thought it would be better to tell me in person. I lost it; the nurse embraced me, as I cried on her. She said that they were able to get him breathing with the oxygen on hand but they needed my permission to do a blood transfusion to boost his blood oxygen. They had already found a blood match in a hospital an hour away and it could be delivered by that night. Of course I agreed and signed the papers. Again, I am so grateful for the nurses, the monitors, the technology, every little thing during our stay there. If it hadn’t been for the alarms going off and the nurse coming to his aid, I dread to think what could have happened…

I called Ed and told him I wouldn’t be able to make it to church today. We had our friends take Emilie after church and Ed came up to be with us. The blood was delivered and the big IV was placed on Lewis’ fragile yet determined little body. And now we would wait. I didn’t know if my heart could handle any more of this…

The turn around that Lewis experienced after receiving the blood transfusion was absolutely incredible. Even the first few hours after receiving the transfusion there was a difference. It was seriously miraculous. The color came back into his face and he became more alert. Because of this transfusion Lewis was placed on a mandatory 5 day stay in the NICU, but after that if he met all of the criteria he could go home!

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IMG_4004Lewis took to his bottle like a champ that week, we still nursed here and there but I just wanted him to pass the feeding criteria and get that little baby home! We’d work on nursing more when we got home, (which we actually successfully did!) The oxygen and feeding tubes were gone. It was really going to happen, there wasn’t anything holding my heart back now. Another echocardiogram showed that his PDA was slowly but surely closing. His oxygen and heart rate weren’t dropping as much, it was so exciting to be on countdown! Before we knew it Lewis was taking his car seat test (a test where we’d bring our car seat in and see if he could handle sitting in it, inside the NICU, for a prolonged amount of time), which he easily passed!

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It literally felt like Christmas (finally!) the day we got to take him home. Life was about to be un-paused. Being able to finally tell Emilie that she’d get to see, touch and hold her baby brother that day was completely over joyous for each of us! Ed waited with Emilie outside the NICU doors, while I prepped Lewis for home. One of our closest nurses was there with us that morning. She helped pack up all our things and I placed Lewis’s NICU Graduate shirt on him. It was size newborn, and it fit! The last of the monitors were taken off of him. He was free. Carefully and cautiously I lifted my cordless babe and buckled him into his car seat.

IMG_0233It was the walk that we had waited 6 1/2 weeks for. The walk out the NICU doors. The doors opened and Emilie laid eyes on her baby brother. She smiled. We sat on the floor around Lewis’ so Emilie could see him better and touch him. With tear filled thank you’s and heart felt hugs to everyone present, we buckled both of our kids into the van. It was so surreal to have two kids with us finally, not just an empty car seat, empty crib, or an empty baby swing anymore. Ed being the wonderful man he is, offered a prayer before we began our descent down the hills of Pocatello. As we drove to our home, a part of me felt like this day was Lewis’s birthday. His entrance into the world.

Lewis Bennett Jessop, discharged at 3:30pm January 27th 2017, 5lbs 11oz, 18 inches.

Thank you to everyone who gave us prayers, love, service, support, your words or encouragement and your time. We couldn’t have done it without you.

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