Continued from a previous post, When October Became September
That drive home felt harder than giving birth. My body didn’t feel like my own; it was a hollow shape of where Arthur was. My arms were empty, as he stayed at the hospital in a dim room with cords, monitors, nurses, and doctors.
Codey and I attempted sleep and rest in our own bed. As soon as we woke up the next day, we rushed right back to our son. This became our routine for a month.
We spent all day by Arthur’s side, leaving each night around 9PM. We wanted to be there to help care for him and to assure him we were there. The nurses always commented how Arthur knew our voices and our presence–it helped him to feel safe in such a different, new world.
In the beginning, Arthur didn’t know how to eat. He was supposed to be safely tucked in my womb without the need to eat on his own yet. Because he was very sleepy and couldn’t eat, an IV was placed in his head. The IV was attempted elsewhere, but his veins kept breaking. After he could keep his blood sugar up, the IV was removed and a feeding tube was placed in his nose. Around the clock, every three hours, we would patiently offer him a bottle of expressed breastmilk; when he couldn’t eat the necessary amount, we pushed the rest into his feeding tube. At some feedings he would eat a few milliliters and other times he wouldn’t eat at all.
One of the scariest parts of learning how to eat, is also learning how to breathe and swallow at the same time; Arthur had trouble with this too. While eating from a bottle, his little body would sometimes forget to breathe. When this happened, alarms rang from his machine and we’d watch the white and blue lines change, and then we’d watch their number drop; first the white numbers and then the blue ones. The white numbers were his heart rate; the blue ones were his oxygen levels. Sometimes his alarms would only ring for a few scary seconds, but other times they’d ring for a terrifying minute. As premature babies learn how to regulate their bodily functions, they can begin to “pull themselves out of” those experiences of sudden heart rate and oxygen dips–which are called “brady’s” in NICU lingo. Brady’s also happened while Arthur slept. If a baby cannot pull themselves out, stimulation is needed–often a nurse will touch the baby to remind them that they’re here in this world and that they need to breathe.
Before a baby can go home from the NICU, they need to meet certain benchmarks and clear hurdles. Arthur’s main hurdles were to maintain his own body temperature without the warmer, grow out of the Brady’s, and be able to eat all on his own, without the feeding tube and gain weight. Learning to eat on his own took the longest. There were ups and downs, one step forward, two steps back. We saw several babies progress much quicker and it was hard to not be frustrated. Family and friends were eager to know when Arthur would be home, as were we–but Arthur was the driver and we went at his pace. He wasn’t supposed to learn any of this for six more weeks, until he was supposed to be due.
We tended to Arthur’s needs every 3 hours. These care times were called “Kangaroo Cares.” We’d take his temperature, change his diaper (in the beginning we had to weigh his diaper), attempt breastfeeding, bottle feeding, and then ended with pushing the rest in his feeding tube. This usually took about an hour, and then I’d pump, go eat, and come back and do it all over again.
Breastfeeding a premature baby was challenging. Perhaps this is because I’ve never done it before, or maybe it’s because I always had helpful people each telling me different things, or maybe it’s because I had clogged milk ducts every other day–it could be a zillion reasons, many of which I won’t get into in this post, but for me, breastfeeding was a big part of the NICU experience. I so badly wanted to feel the connection I’ve heard and read about, but I also didn’t want to overwhelm my very tired and small baby. How in the world was I ever going to get him to breastfeed if he could barely suck a bottle? Each time we attempted, Arthur was placed on a scale both before and after; the scale would determine approximately how many milliliters Arthur ate. Sometimes it was 6ml, sometimes it was 10ml; towards the end of our journey, for one memorable feeding, it was 30ml. Our breastfeeding journey was far from easy, and it still isn’t easy 5 months later, but that is for another post on another day.
I could ramble on and on about Arthur’s daily progress: how much he ate, how he ate it, how many ounces he gained each day, his bilirubin levels, and which tests were ran–but I won’t do that. The NICU experience is full of data and numbers. Little by little each day, those numbers and data would improve and increase. Baby steps.
During this time, it was discovered that he had a heart condition–a moderate sized hole between two sides of his heart (VSD). Because of this, Arthur is no stranger to echocardiograms, ultrasounds and x-rays. Over time, this hole should hopefully close all on its own. We listened to his heart every day, the swish-swish-swish of the murmur grew a tiny bit quieter as he grew stronger.
Each night it was so hard to leave Arthur there. Before leaving, I’d always make sure he was settled. If he was crying, I’d scoop him up, sway, and hum a John Denver tune. I’d kiss him goodnight and say, “I’ll see you tomorrow, sweet boy. I love you.”
One morning when we arrived, we noticed his hands were covered in strange markings. His palms had red marks that extended to his wrists and his fingers were purple and blue. Several staff were perplexed as to what could cause this condition to happen; we were cautiously told that sometimes things cannot be medically explained. Eventually, the marks faded. The unknown cause has always haunted me.
Codey had two weeks off during our NICU experience and when he had to return to work, his heart broke in two. Each day after work, he’d rush all the way to the hospital, even if it was just to tell our little boy goodnight. I never imagined that I could love Codey more than I already do–but then he became a father. Seeing him with our baby makes me unimaginably happy. It feels like puzzle pieces fitting snugly together. It feels like this is the way it has always meant to be.
In the beginning, I struggled with the why. Why did this happen? Why was my baby born early? Why is everything so hard? Why do I need to experience more trauma? Why can’t I grow a healthy full term baby? I’m sure many parents in the NICU feel similar things as the roller-coaster of emotions changes every day. I’m learning more about my own body and health and discovering perhaps, why Arthur was born early and why I had a miscarriage earlier. Answers are power, but so is faith.
Our total journey in the NICU was 27 days. My heart goes out to the families of babies who were there for far longer and experienced much greater obstacles. Those 27 days seemed to last forever. Oddly enough, looking back, I can’t believe we were there. During some moments, it seems like it happened to someone else–not to us. But then in the next moment, it all rushes right back and feels so heavy. I think anxiety and trauma play tricks on the mind…when you’re really in it, in a stressful situation, the fight-or-flight response kicks in. We fought every day to be present, to learn as much as we could, and to soak up every precious moment of Arthur’s first month of life. During that month, it felt as though we were in a bubble–in our own little world where each milliliter and ounce mattered; each revolution of a minute was important. In the bubble, nothing else mattered..and yet that outside world kept spinning along.
I’m thankful for the kind nurses and doctors who were there for our family along the way. I was so incredibly inspired by some of the nurses we were close to. They were selfless and made a huge impact on my life. They helped me with breastfeeding, they were tender and kind to our sweet boy, and they supported both Codey and I as new parents. Seeing what they do, made me want to practice more selflessness and more kindness.
Several weeks after bringing Arthur home, just when I began to gain more confidence as a mother, he was rushed to the ER for emergency surgery. He had developed three hernias, two inguinal and one umbilical, which were causing him extreme pain. He screamed for an entire day. And just like that my confidence was replaced with the all-too-familiar fear I felt during pregnancy, during birth, and during his NICU stay. I held him on my lap in the ER as they did x-rays, ultrasounds, and used manual force to push the hernias back in; I’ve never seen him cry so hard. As he was whisked away for surgery, I cried my eyes out. My baby is so strong. He’s stronger than me.
Arthur has been through so much. He’s the teacher, constantly showing me how to be strong. He very well could be our little miracle baby. He’s our rainbow. He’s home. He’s healthy. He’s safe. He’s strong. He’s our little warrior. He’s the kindest soul I’ve ever met. He has the brightest eyes, attentively soaking everything in. A dear friend of mine once said, “he sure rearranges the universe, doesn’t he?” He does. He has changed me. When he was born, I was born, too; I’m overtaken with a new purpose and unexplainable urgency.
My NICU daily diary
Day 1: My heart has burst open. Baby wanted to see the world nearly 6 weeks early and at a fast pace! So fast, there was no time for pain meds. Arthur Wade Gallas was born 9/17/17 at 3:31am at 4 lbs 12 oz and 17″ long. He’s camped out in the NICU, doing great. We are so overwhelmed with happiness that our son is here–our strong rainbow baby.
Day 2: 9/18 He is small but mighty. So thankful for great nurses. They call him a strong 34-weeker.
Day 3: 9/19 Ever since I found out I was pregnant with this sweetie, I told him each day how strong he is.
Day 4: 9/20 Bili-Blanket Day. Codey says, “Today we are little spaceship baby!”
Day 5: 9/21 Arthur got to take a break from the lights during his “care time.” Care times are 8 moments spaced throughout a 24 hour day that Codey and I get to hold him and feed him. I wish we had more time to hold him, but for now he needs his rest to grow.
Day 6: 9/22 We were moved to Intermediate Care today…however, this was only due to lack of space! Little steps every day, peaks and valleys. Here is our tiny little corner of a shared nursery.
Day 7: 9/23 Arthur likes to look at us when Codey and I talk to him. He’s very sensitive to sound but loves our soft voices. He knows us and it makes my heart beam.
Day 8: 9/24 Busy growing and sleeping and dreaming.
Day 9: 9/25 Slow progress. The best birthday present I could have ever received is when he looks at me. I have been really anxious about the new space he’s in–a shared nursery, separated by curtains, which is very cramped and kind of loud…just when I began to accept it, construction next door started and it was even louder! The babies were given earmuffs for the noise. Oh little, Arthur.
Day 10: 9/26 Codey and I brought some books. I cracked one open from my Mary Oliver collection. She always knows just what to say. This was the very first page of the book–I’ll take it as a good sign.Things take the time they take.
Day 11: 9/27 We were able to give Arthur a swaddle bath today and yesterday he loved his infant massage and skin to skin time. The occupational therapist gave him an octopus that was made by a volunteer–preemies like to grasp the tentacles just as they would an umbilical cord in the womb. Arthur is still learning to eat on his own and swallow and breathe all at the same time. He is now 5 pounds.
Day 12: 9/28 Little by little Arthur is still working on eating. Today was busy–he saw a physical therapist and the speech therapist. He also did a great job learning to breastfeed. Sweet dreams!
Day 13: 9/29 This sweetie pie is trying his best to get better. Today we saw several newborn babies bundled in car seats with parents–headed home. We can’t wait for that to be us so we can finally bond with our son in our own home away from dinging machines, numbers, data, tubes and wires…But for now, this is where Arthur needs to be. He is safe. He is doing better. Things take the time they take. It breaks my heart each night when I have to leave him.
Day 14: 9/30 That makes 2 weeks. The days slip into each other and we spend all day every day by Arthur’s side, helping him learn to eat. Today the nurse said that we bring a good and calm energy to a very crowded space. I will say it has been a challenge to not get overwhelmed in a shared nursery with 4 other babies and their families in such a small space. Lots of office chairs and bumping into one another. Arthur loves our presence too–I can tell.
Day 15: 10/1 These two. My boys. I recently saw some Facebook post that said if you brag about your relationship on Facebook, its not a strong/good relationship. But guess what? I don’t care what some article says. I’m gonna brag about Codey. He’s the best. He’s an incredibly caring person, supportive husband and father. He sings to Arthur, wakes up in the middle of the night to clean my breastpump, takes care of me, and does countless other things which I could talk about forever. I am so very lucky. I love him so so much.
Day 16: 10/1 A busy day of growing, resting and making progress. Sometimes when Arthur cries, I’ll hold him up to my chest; he takes a few deep breaths and the crying stops. Then he lifts his head to look at me, tucks his chin and settles.
Day 17: 10/3 Today was the very first time Arthur ate a whole bottle–for not one, but TWO of his feedings! All of the nurses cheered and a few moms congratulated us. They know how hard it is for preemies to eat. Some feedings are better than others, but today was a good day. He is still working on nursing and gaining strength to eat more.
Day 18: 10/4 The nurse put an oxygen tube in the bath–baby jacuzzi! Arthur loved it. He didn’t eat as well as yesterday, but he will get there. The hospital staff now knows us. The coffee shop lady, the door greeter, and the desk people who unlock the door to the nursery. “There goes that girl with the cooler again.” I bring Arthur breastmilk each morning and stay with him all day.
Day 19: 10/5 Growing! Arthur is now 5 lbs 9 oz. He’s still doing his best to eat by mouth and nurse. Baby steps. The nurses love this little cutie. They even fight over who gets to care for him at night.
Day 20: 10/6 It was really hard to leave tonight. I know he’s where he needs to be for right now…but I just want to get to know him better. I miss him. I wake up every day and go to the hospital. I stay there as long as I can–I sit in a chair next to his crib in our corner of a busy room. We close the curtains to make our own safe space. At night I have to pull myself away in order to have the wherewithal to drive back home. I spend 10 hours a day with him and it isn’t enough; I’m sure 24 hours a day isn’t enough either.
Day 21: 10/7 Ups and downs on the eating progress, but that hair keeps on growing.
Day 22: 10/8 One of my most favorite things ever is when Arthur looks around; his eyes are really beautiful and curious. He’s a pistol when he’s trying to tell us what he wants, but as soon as he’s calm, he quietly observes everything around him, soaking it up. He follows voices and sounds. When he nurses, he looks up at me and I melt. When he cries, I scoop him up to my chest and he lifts his head up to look into my eyes and then sighs. As silly as it sounds, I feel like he sees me–in a sense that he can see right through everything, down to my core. It’s love. And hope. And all the cheesy things that aren’t so cheesy when confronted with such a sweet, beautiful soul that’s tethered to mine.
Day 23: 10/9 Today we moved back up to floor 7 and are back in our own room! Our very own space. Hooray!! The doctors say that this is a frustrating time for parents and families…waiting for the “light switch moment” when Arthur will eat better. It is frustrating because everybody sees a healthy baby who appears ready to go home…but he is actually still supposed to be in my belly and was forced to experience light, sound, breathing, sucking, swallowing, eating and regulating his temperature all on his own–6 weeks early. That’s a lot! Babies brains (among other things!) develop a lot in the last month of pregnancy, and Arthur never got that boost. Had he been born today, he’d be a better eater because he would’ve had more time to develop in his comfy, dark, safe womb where food was easy to eat. Preemies usually excel and focus on one thing at a time. He has succeeded in all the things so far except eating. We will be patient. He is where he needs to be. The doctors are also keeping an eye on his heart murmur–a moderate sized hole in his heart. Despite the frustration, I have made it my mission to not let that frustrated energy enter our space. Baby steps are better than no steps. And today this little boy made strides.
Day 24: 10/10 Arthur is busy doing his best and working hard! Learning to eat better each day. If he continues to eat this well, he’ll be home in three short days! Oh, and check out our sweetie on the hospital website!
Day 25: 10/11 Today I walked in to see that my baby no longer has a feeding tube in his nose! Big progress! Way to go, buddy! Keep hitting those benchmarks. There is a hospital photographer here who captures all of the NICU babies and their progress each week. Here are some shots she captured for us from last week.
Day 26: 10/12 More progress! 6 lbs! And this little jelly bean loves to be upright and snuggle his mama. I see many walks in our future.
Day 27: 10/13 HOME BOUND! After a 27 day stay in the NICU, Arthur is coming home! It was so strange to scoop him up and walk around his hospital room without being attached to cords and tubes. We are rogue! No more monitors! Off the grid! Because he’s a preemie and should still be in my belly, he needs some extra care. Thank you to everyone who has shown us such kindness and love during this past month. Little Arthur is finally settling in with us at home. And thank you to all of the NICU nurses and staff…we are so so grateful.
First Day at Home: 10/14 home, home, home.