16 February 2012
I was recently chatting on the couch with a friend. I was telling of my visit to see our mutual friend’s beautiful newborn, Macie London, and how when I walked past the NICU in the hospital to get to the post-partum unit, my eyes started to well up with tears and my throat began to close. Memories flooded back. With a legitimately surprised tone she responded by saying something along the lines of “So you are still affected by that?” Yes. The answer is yes. I am still affected by our sweet baby’s early days in the NICU and am still struggling with fear. I am a work in progress.
For no other reason than to record my memories of Liam’s early days to later share with him am I writing this entry. So there will be no apologies for its ridiculous length, because this is designed for no one other than my son. But because I am so proud of all that he has overcome, and all we have come through as a family by the overwhelming grace of God, I am choosing to post this to our blog to share with you, should you desire to read it. For your abundant support, constant prayer, endless encouragement and unconditional love, we thank you. You know who you are ;)
May 12th. What a beautiful day. I cannot say that having a scheduled cesarean section was our first choice over a natural vaginal delivery, but knowing the day that our son was going to arrive was very exciting... we were counting down the hours. Liam, mommy and daddy have been excitedly awaiting your arrival for years baby boy. We have been praying for you and longing to see all that God has in store for you for a very long time. I was able to shower, braid my hair, and pack without being rushed as we had an 1100 check in time. This would be the last time for days that I would be fully clean, almost fully rested, and organized. Actually, who am I kidding? Liam is 9 months old now and I still can barely brush my teeth before noon, he isn't sleeping through the night yet, and the house is usually in some degree of disarray or another... but we are ha-ppy! Priorities have shifted. :) We checked in and the ball started rolling. An IV was started along with a saline bolus, admission questions answered, photos taken, and there we were in the pre-op room with a ticking clock... Our OR time was postponed (shocker), but Casey did a fabulous job of distracting me so that it didn't feel as torturous having to wait longer to meet our son. Finally we were called back. Correction-- I was called back. Casey was not allowed back until my spinal block was administered and I was fully prepped on the table. It felt like an eternity waiting for him. I must have asked the OR staff 5 times if it was time yet for my husband to join me. This time was part of what could be likened to another woman's laboring process in the sense that with each step we were getting closer to having Liam in our arms, and I just didn't want to be without Casey for any of that time. Liam is our baby, and it didn't feel right not having him there for the entire experience. Alas, we followed the rules (not by choice) and he waited patiently until he was finally allowed in. At that moment he grabbed my hand and did not let go the entire time. He is the epitome of a supportive husband and encouraging others is one of his many strengths. This day was no exception. We locked eyes and listened to the OR talk that was surrounding us between the doctors and nurses. We hear "first cut at 1420" and know that we are minutes away from meeting Liam. Exactly 4 minutes later at 1424 the most beautiful, breath-taking sound filled the OR. Liam was breathing independently and crying loudly to prove it! Tears instantly filled our eyes and joyful crying commenced. Liam, mommy and daddy have been blessed with many wonderful experiences in our 9 years together, but this very moment surpassed them all by far. You are a delight, sweet pumpkin, and we thank the Lord for allowing us the privilege and honor of being your mommy and daddy. The love we have for you is like none we have experienced before.
While I was being sewn up I excitedly told Casey to go be with Liam (bossy thing, I am!) He of course had told me previously that he would stay with me until the doctors were finished with me, but I couldn't stand not having one of us with Liam right away and thus insisted that he go be with our son. Liam had a few breathing issues at first and required intervention from the NICU staff, however as soon as he stabilized Casey was allowed back. At last, Liam had his daddy at his side talking to him and loving on him. What better way to spend the first hours of one's life? And after what seemed like an eternity, the doctor had completed her task of closing me up and I was wheeled into the hallway where my boys greeted me. My eyes are filling with tears as I type out this memory. The smile on Casey's face was unlike any I've seen. It was a smile so pure, so true, so deep. To say that he was beaming doesn't begin to capture it. And Liam, my sweet babe, mommy has loved you for so very long. Having you grow inside of me, feeling your kicks and your tiny hiccups, carrying you with me for 9 months... you were the apple of my eye even before you were born. And then to see your sweet face... oh the joy in that moment! Although I thought it to be impossible, my love for you deepened even more. The way you looked at me, your precious lips, adorable cheeks, beautiful blue eyes, soft hair, tiny fingers and toes, and having you rest so comfortably in my arms... all treasures that I will store up in my heart forever.
Back to the recovery room we three went. We three. I love saying that. Knowing for a while that I was going to have to have a cesarean, I did my best to educate myself on breastfeeding as I had heard from several sources that it can be more difficult following a c-section due to the lack of natural rush of hormones, amongst other things. I definitely was nervous about nursing not coming naturally and not being able to offer our babe this amazing God-designed food that is so perfectly made for babies. Liam, mommy never should have worried! You are a natural, hunny! You are such a quick learner. You fed 17 times in your first 12 hours of life, and haven't slowed down much since! You love to eat and let me tell you that nursing you is one of the most special things I have been a part of in my life. I almost feel more connected to you when nursing you than I did when you were inside my tummy. Up until you were about 11 weeks old you would usually awaken twice in the night to eat. The first feed you almost always would sleep right through, sucking steadily with your sweet eyes closed. And the second feed you would greet me with a huge smile when I reach into your crib to pick you up! The way you smile with your tiny little tongue sticking out of your mouth makes me melt every time. I treasure this time that you and I share. Nursing was definitely not a natural process for me, as Casey, my mom, and the lactation nurse, Nancy, can all attest to. Liam knew what to do from the first moment, and I took much longer to learn. We have come a long way, as I no longer need the support of 12 pillows, the perfect seating arrangement, or someone to hand me the babe after I have found the perfect position. Liam is happy to eat wherever, whenever, with pillows or without. In the first weeks of life Liam gained a pound in 6 days, and another whole pound the following 9 days... Loves his milk, that boy!
So there we were in the recovery room, staring in amazement at our son. Sweet pea, I almost didn’t believe that you were ours. We were in a blissful shock that you were actually in our arms! Those first moments holding you were so far the highest point in my life. Mommy and Daddy know that you are God’s baby and we are just SO grateful to be your earthly parents. As Grampy said, you were fresh from the Potter’s wheel… everything about you was and is captivating. All I could do was stare at you in utter amazement. Yes, complete and utter amazement. You absolutely are ‘fearfully and wonderfully made’…
Although I am sure that it was torturous for our extended family to wait to meet Liam, we were SO grateful for the time in the recovery room to just be three. Precious first moments, those were, and we are thankful for the memories that this time allowed us to create. There truly is nothing else in the world that one can liken to two people who already love each other deeply staring into the eyes of their child and falling in love not only with their babe, but with one another all over again.
Sweet boy, I will never be able to express just how much I love you. There is nothing you could ever do, ever, that would take this love away. You are a priceless treasure and I absolutely love being your mommy.
Liam’s first day of life consisted of much nursing, hours of skin to skin time, sleeping soundly in the arms of people who love him, blood sugar checks every three hours due to his large size, diaper changes, and meeting our extended family who made the trek out to Loma Linda to be present on the day of his birth. Liam was blessed to have Casey’s parents, my parents, Luke, Matt, and Courtney all excited to love on him on his very special birthday.
*Side note on the blood glucose checks… I cried each time his little heels were poked, regardless of whether or not Liam slept through the procedure. I cried when he received his immunization injection, even though he calmed as soon as he was nursing again. And I sobbed the entire 20 minutes that Liam was gone having his circumcision. If only I knew what was to come… I do wish I could have every cut, every poke, every pain inflicted on me instead of you. Sweet pumpkin you are the bravest boy and I could not be more proud of you.
Our precious bean, everyone kept talking about just how handsome and perfect you are! We all noticed your adorable dimple in your chin and your long fingers. Your soft pink skin and little cheeks were talked about over and over. What an incredible thing to be able to see your sweet, sweet face after so long!
Although it was torture for Casey to leave, he had to force himself to return home to get at least a few hours of sleep so that he could keep up the 16-18 hours of studying per day he had been doing to prepare for his medical school boards. (For those of you who are not familiar with this process, this exam is the one of highest importance in the four years of school as it determines what kind of residency each student is qualified for.) Needless to say, we did not think we would get pregnant as quickly as we did as having a due date two weeks prior to this test was certainly not ideal… Also needless to say, we wouldn’t change a darn thing because we have Liam and could not be more grateful for this little being in our lives.
So Casey peeled himself away from his little family and headed home for some sleep. There were a few tears shed on my part at this time, as even though we both agreed it was best, it still didn’t feel right. With that being said, Liam and I were beyond blessed that night (and many nights thereafter), to have the only other person I would have wanted to share that special time with… my mother. Oh where to begin… I can feel the emotions rising to the surface as I type. My mother’s level of compassion is unmatched. Her gentle approach when caring for those in need is as well. Her selfless attitude, encouraging words, servant’s heart… all components of what makes my mother the best caregiver I know. She is unafraid to dive in and take initiative when she sees needs that she can help meet. Sweet baby boy, mommy was so scared to go to sleep your first night because I couldn’t stand not watching you breathe. Even though you were strong from the start hunny, your crazy nurse of a mom wanted you on monitors so that we knew you were ok! Of course that would have been silly. Grandma knew that I needed you watched in order for me to close my eyes, so she stayed awake all night and I slept soundly for 45 minutes. Your grandma is the best example of a loving mother that I know. I hope that I will bless you as much as she has me.
All night. All night she stayed awake. For me. My mom has always been for me what I needed, when I needed it, and this was just the beginning of what would be the most intense month of my life holding the scariest of times I have known as of yet. Mom carried us three through in so many ways, always lifting us up in prayer and pointing us to our creator for strength.
Day two was a restful one in the hospital. My surgical pain was under control, I was beginning to ambulate more and more, Liam was eating very well (and frequently I might add), and my mom was able to grab a shower and a short nap… more than deserved! My dad stocked the room with fantastic snacks and brought us meals. (As lovely as hospital food can be, who wouldn’t fancy In N’ Out burgers or BJs pizza?) And the best part of the day… Casey being with us. Completion. Liam I have been looking at your daddy’s wonderful face now for 9 years, and never have I seen his gaze as deep and focused as it is when he looks at you. He is so in love with you baby boy. After many hours of studying your daddy would come to the hospital eager to see his babe. You would snuggle with him, laying peacefully on his chest. Your face looked as though this was the safest, most secure place you’d ever laid. You are certainly at home in your daddy’s arms.
Night number two meant Casey had to go home to sleep again, but my amazing mother was again eager to help and stayed with Liam and myself. I was a tad (small tad) bit less anxious about watching Liam breathe through the night and we both managed to get a few short (very short) stents of sleep. Before we knew it the sun was making its glorious appearance again and we were on to a new day. Visits from doctors, nurses, a fabulous lactation consultant, our wonderful family members and a group of great friends all graced us that day. Liam was a champ and loved all of the attention. Sweet pea everyone kept on commenting on your adorable dimple in your chin, your cute eyebrows, and your large size! I have truly never seen a cuter baby in my life… you take the cake!
We said farewell to 3 of the 4 grandparents that day as well as uncle Lukey. How blessed we all were by their visits.
The third night brought some tears as Liam’s weight had dropped below the doctor’s cut off line and he decided to go over 12 hours without peeing. I had to feed him formula and this was definitely not my first choice. Although a tad overly emotional about the idea (my mom is probably nodding right now J) I consented as I certainly wanted his little body to stay hydrated and his kidneys to be kicked into gear to make some urine. The wonderful nurse on duty that night helped me to gavage feed Liam using a tiny tube lead down to my nipple so we didn’t even have to bottle feed him. 13ml of formula later Liam was full and content and he gifted his mommy a wet diaper. Oh the things you rejoice over as a parent. Liam continued to sleep and nurse well and there we were again looking out at another beautiful sunrise. Sunday was here. Sunday meant being discharged home, bringing both excitement and nervousness to our little family. Were we ready? Although nervous to leave the security of the monitoring in the hospital, once home we were so glad to be there… home at last with our sweet boy. However before we were to leave Liam had to endure one big injection for his immunization and a minor procedure… his circumcision. I made Casey go as I couldn’t stand the thought of Liam not having one of us there with him and I knew that I wouldn’t be able to watch our baby hurting like he would during such an event. I took my first shower since his birth while the boys were away with the doctor, and cried the entire time thinking about my baby being in pain. Not soon enough, the doctor wheeled Liam back in the room in his bassinette, his daddy by his side. Liam was sleeping soundly and his little hand said it all… he was flipping the bird, and we supported our son feeling this way about what he had just experienced J. It’s too bad I didn’t capture the sight with a photo.
Fast forward to the discharge… the main thing I remember about the process was how hurried I felt. Casey showed up ready to load everything in the car, and true to form I wasn’t fully packed and ready. Normally this would have been fine but he rightfully so was needing to use every minute wisely due to the need for studying and I wasn’t helping the matter by not being ready to go. My mom, being the awesome helper that she is, offered to help pack the rest of the room and bring home those belongings so we could just focus on getting Liam home. Liam, to say the very least, did not fancy his car seat. And the fact that Casey and I were complete amateurs when it came to correctly fitting a baby into a car seat didn’t help. Paperwork was quickly reviewed and signed, prescriptions were in hand, Casey had bags slung over one shoulder and a crying baby strapped in a car seat in the other, and we left my mom to clean up whatever we had left behind. Nice of us, eh? We were so flustered that we forgot about the wheelchair the nurse had retrieved for me and I just quickly followed after my husband and son, waddling in pain down the hall and through the parking lot until we reached our car. I honestly was so caught up in getting Liam home that I forgot I myself was post-op day 3 and probably shouldn’t have been chasing my boys to the car…
Sweet boy I don’t think we have ever been more nervous to drive as we were that night. Never before had we toted such precious cargo in our car! Good thing your daddy is SUCH a safe driver! And how nice that our drive home was only 3 minutes… Carrying you up the stairs and into our apartment felt so right. We are a family and you were finally home.
My awesome mother packed up the rest of the hospital room and met us at home. We had asked her to stay with us for the two weeks she was in town, as we both felt more comfortable having her as close as possible while Casey was busy studying. I knew I would need help and want it for that matter, but I had no idea just how much help we would come to need. I could write a novel on the subject, but to be simple and concise, my mom blessed us three beyond anything we possibly could have imagined. She was (and always has been) the epitome of a selfless servant, loving those around her actively by helping to meet practical needs. While I continued to recover from surgery and Casey carried on with his diligent studying, my mom kept us afloat by doing everything, and I mean EVERYTHING, else so that we could just enjoy being new parents to our precious bean. She cooked three fabulous meals a day, did all our laundry (which became quite the chore as the little one went through several outfits, blankets, sleep sacks, and changing pad covers a day), made me a medication chart to keep track of when I last took which medication, ran errands galore including several trips to Target and Babies R Us for random baby nick nacks that we came to need, cleaned the house, and all the while still had energy to get up several times a night to help me with Liam. Several is an understatement there. And then when we were running out of thin blankets because Liam became a pro at pooping and peeing on them in-between nappy change times my mom bought the softest cotton fabric and sewed several more. When we were constantly washing his waterproof changing pad covers for the same reason she sewed more. When Liam developed a horrible diaper rash she went to the store and came home with a plethora of ointments to try… anything to help. She emptied the trash cans, baked shortcake for dessert, and allowed us to figure out how to be parents on our own, all the while being available to help in any way we so desired. And as incredible as all of this is, the thing I was most grateful for was having my mom with me through what would be the scariest of times I’ve known. Here we go… I’ve been dreading journaling on this subject because it requires reliving it in my memory, but I do want it in writing so that Liam can one day read about his first weeks and know how brave he was.
Sweet pumpkin you are our delight. Having you home and in our arms is heaven. We could just stare at you forever. Your daddy told me that sometimes when he looks at you he just starts to cry… we just love you so much. Those first few days are full of treasured memories that I will store up in my heart forever. Your tiny little self all curled up on my chest, your sweet eyes that open so wide, eager to learn about all that surrounds you. Your pink lips and tiny toes, your soft hair and adorable buns. Everything about you is perfection. As your Grampy said, again, you were fresh off the Potter’s wheel… fearfully and wonderfully made by the King of Kings. You are a miracle that we can hold. How did we get to be so blessed as to be your mommy and daddy? It is a privilege and an honor, sweet one, to be your parents.
While we were entranced by your sweet self, your crazy nurse of a mommy couldn’t help but notice that you were breathing just a little too fast. You weren’t too warm and we didn’t have any other explanation for this finding, so at this point we just continued to watch you and see it improved on its own. Sweet pea you just kept panting like a little puppy, no matter if you were awake and alert or sleeping soundly. So naturally your mommy did something that she is far too familiar with… worry.
A phone call to Liam’s pediatrician was made and he calmly explained to me that despite the fact that everything else seemed to be fine, an infant having a respiratory rate greater than 60 RPM needs to be assessed as it is abnormal and he suggested going to the emergency department. Tears began to form and I felt my throat tighten. All I had wanted to hear him say was that Liam would be fine, and to not worry about these findings as they were completely normal.
I had also told him that we had been checking his temperature frequently with our temporal thermometer and it had read 100.4°F at one point. I explained that Liam had been quite bundled and after stripping him of some clothing his temperature quickly decreased. Dr. Rao said that 100.4°F is considered a fever for an infant 28 days old or less and even though the accuracy of the reading was doubted the ED physician would likely order a septic work up, including a lumbar puncture. At this point my throat felt completely closed. Tears were flowing. I got off the phone with Dr. Rao and relayed the message to Casey and my mom, or at least tried my best to do so through the crying. How could our 8 day old babe be so ill as to warrant a LP?
Casey and my mom were the perfect combination when it came to supporting me through my hysteria as Casey is the voice of reason and logic, and my mom is the queen of empathizing, sympathizing and meeting me where I am at emotionally. I cannot count the number of times she tenderly yet firmly grabbed my hands and cried out to our Maker on behalf of our sweet baby boy. And both Casey and my mom were so good at repeatedly pointing out all things good about Liam’s health, so as to help me focus on the positive and maintain optimism.
Off to the ED we went in a hurry. I was barely able to open my eyes at this point as they were so puffy from crying. I was dressed in a nursing tank top, a large skirt to accommodate my post-partum belly and flip flops and wearing a messy pony tail with no make up. I bled on my skirt (another post-partum blessing) and probably had no deodorant on. Oh how priorities change when one becomes a parent.
Sweet babe you were the bravest boy. You were whisked to the back of the ED to be seen right away because you were so tiny and fragile. Your vital signs were taken and the nurse weighed you. Very soon after you had a urine sample taken, blood drawn and a chest x-ray. Mommy had to hold you down for the chest x-ray and you cried the whole time. So did mommy. We walked back to our little room and the nurse placed you on a monitor to track your heart rate and your respiratory rate. Finally able to rest, we climbed up on the gurney together and you began to nurse. Your daddy and grandma made sure that mommy kept eating and drinking through the crying so that I could still make milk for you. It was all I could do to choke down a few bites and swallow a few sips of water. Even through the panting you looked so peaceful. How could you be sick?
Dr. Kim came in to assess Liam and explained to us something that we were to hear over and over in the future… that yes, Liam’s tachypnea (fast respiratory rate) was abnormal, but that all other findings were normal. This brought us both peace in that all diagnostic tests so far were clear, but also simultaneous unrest as we still had no explanation for his abnormal breathing. The best guess he gave us was a diagnosis called Benign Tachypnea of the Newborn. He explained that this condition usually resolves itself between 5-10 days of life and that it is idiopathic. Dr. Kim also explained that since there was a suspected fever, although extremely questionable, that a full septic work up would be the safest route to go, including a lumbar puncture. As if my eyes weren’t puffy enough, the tears started to flow again and the eyes became even puffier. After much conversation between myself, Casey, and my mom, we decided that the “fever” had to be environmental in that he was so bundled at that time and his temperature came down quickly after removing layers. We refused the lumbar puncture. I just remember repeating over and over “but what if it was a true fever and we’re missing something… I’ll just never forgive myself.” Alas, we left the emergency department with a tired newborn and strict instructions from the attending physician to monitor him closely and bring him back immediately should we notice any other signs of respiratory distress or a true fever.
Little bean mommy and daddy were so proud of you that day. We have never worried over anything more in our life and that is because we have never loved anyone so intensely as you. You are so dear to us, and this day was the first of many when we were boldly reminded to hand you over to your Maker, that you are His baby, His creation. We are grateful for every day, every second we get to spend with beautiful, wonderful you.
Home we went. How do we sleep now?, we wondered. Again, I was wishing that he was on a monitor so that we could close our eyes and trust that we would be alerted if he was in any distress. Alas, we were the monitors and the monitors needed sleep desperately. We covered Liam in prayer, over and over and over, and shut our eyes for small stents between feedings.
Even though you still were panting like a puppy, you continued to eat like a champ and sleep peacefully between feedings. So amazing, you are!
The few days following consisted of Casey continuing his diligent studying (about 14-16 hours per day), my mom taking care of us three in her wonderful ways, and me continuing to recover from surgery and just enjoying our incredible new delight, Liam. We three tried hard, very hard, to just ignore his tachypnea and focus on all things healthy and normal. SO hard to do when the adorable little baby in your arms is still panting away…
Fast forward three days and Liam was still breathing far too fast for our comfort level. We decided it best to take him to the pediatrician’s clinic to be assessed. The doctor on that day had been in his field for roughly 30 years and said that he had only seen this finding in a newborn once before. He agreed that yes, Liam was breathing too fast, but that all other findings were normal. Yup, we’ve heard that before thank you very much. We’re looking for a little more… Alas, there was no more to say except to tell us to continue to monitor him closely. No need to tell us that! And home we went with our sweet baby.
Later that night Liam added a little more drama to the picture by having some minor nasal flaring and subcostal retractions… two more signs of respiratory distress. Being pediatric nurses, the eyes of my mother and myself went right to these findings and our worry level was raised. Babies work and they work and they work to breathe… and then they poop out quick. We have both seen this scenario before with patients at work and knew where Liam could be headed if we didn’t act quick. A call to the pediatrician we had seen earlier that day verified our feeling that we needed to return to the ED, and away we went.
Eleven days old you were then, hunny. It just felt so surreal bringing you to the hospital, again. We were supposed to be home snuggling and gazing into your sweet eyes, not rushing you away to the emergency department. Mommy wanted so badly to be nothing but strong for you, sweet one, but I just couldn’t hold it in. I cried and cried and cried, worrying about you and your safety. Your daddy was strong for us both as he remained calm and steady, reminding me of all things healthy about you. And your grandma just kept grabbing my hands and bowing her head, praying over your tiny body, committing you to the One who made you.
We were beyond blessed to have fabulous Dr. Kim again in the ED. He knew Liam’s history and had assessed him personally before making it easier to note any changes. More vital signs were taken, monitors hooked up, chest x-ray ordered and obtained, and an EKG ordered and obtained.
Sweet pumpkin your tiny body was COVERED in EKG leads! Cords were coming off your body from every corner. They were so sticky and grandma helped peel them off while mommy nursed you because it was hurting you to take them off. You looked like a little tomato after we were done removing them because your skin was so sensitive. You were so brave and so strong through it all… we could not be more proud of you.
There we were, me nursing my babe on a gurney with my mom by our side. We decided it to be best for Casey to stay home to study and get some sleep, and that we would call to update him as we knew more information. The night went on and all tests came back normal, again. A mixture of emotions came along with this report as of course we were glad that all diagnostic tests so far were normal and without problems, however we still were left without any sort of explanation regarding his increased work of breathing… very unsettling. The physician decided that it would be safest to order an echocardiogram, as a heart problem could be the cause for fast breathing and he wanted to rule it out. Liam was a trooper through and through and slept through the entire procedure. And praise the Lord that nothing was found… Liam’s heart was perfect. But of course we already knew that. J
My mom was so good. So good. She faithfully updated Casey along the way so that I could focus on tending to Liam and getting a little rest myself. She fetched me a berry smoothie and a breakfast burrito and made sure I drank water. She hugged me and kissed me and prayed continuously over our little bean. She was being the mother to me that I wanted desperately to be for Liam… she was strong when her baby was weak. When I grow up I want to be like her.
Seeing that all diagnostic tests were again clear, the physicians (a whole herd of them) all felt comfortable with us returning home with Liam and continuing to monitor him there. No one could give us an explanation for his tachypnea, but several guessed that his was a drawn out case of Benign Tachypnea of the Newborn. As I was reading over the discharge paperwork one of the instructions caught my eye: If your infant is breathing faster than 60 breaths per minute bring him/ her to the emergency department immediately as this could indicate a medical emergency. Yup, I agree that it could, and you are discharging us knowing that he is still breathing too fast? To say that I was still uncomfortable with the situation and worried about our son is a gross understatement. But what were we to do other than listen to and trust the many trained physicians who had assessed our son and deemed him safe for discharge? Alas, we returned home again.
We were blessed to have my mom for three more days following this most recent emergency room visit. Casey continued to gracefully juggle the stress of parenting a sick newborn, comforting an extremely anxious and emotional wife, and countless hours studying for his boards. And my amazing mother continued to help carry us three through the rough waters we found ourselves in. Poor thing was so fatigued that she started having palpitations, enough to warrant an ED visit to be assessed. Casey and Katie traded off staying with my mom in the ED while our dear friend Dana pulled an all-nighter helping me with Liam. Humbled by the acts of love shown us by our wonderful friends, we were. My mom checked out ok and was told to rest up. Ha. The doctor didn’t realize what kind of situation she was being discharged home to when he gave that instruction. J
The day of Casey’s big test finally arrived. I could not have been more proud of him, or more grateful for the peace and calmness that the Lord blessed him with that day and those leading up to it. He slept well the night before, woke up excited, showered and dressed in a handsome outfit consisting of his dark jeans, black polo shirt and black leather shoes. His hair was combed and teeth brushed and he was ready to go. Liam and I sent off our Casey with hugs and prayers. He returned home to us in such high spirits we couldn’t help but be thrilled and thankful that it was over and that he felt so great. Thank you Lord for blessing his efforts. We wouldn’t find out until much later, but Casey stayed true to form and did an absolutely amazing job on his exam. So proud of you babe! My mom cooked him a celebratory dinner that night and we said our goodbyes to her the following day. Many tears were shed on my part after her and Casey took off for the airport…
Momma, we absolutely cannot ever thank you enough for the countless ways in which you blessed us during Liam’s first days. There are no words to express our gratitude. We love you.
Sweet Liam Vincent, daddy had two weeks off between his test date and when he was to start his third year of medical school, and we were so excited to fill this time with going on adventures with you! You have been curious about the world since day one, taking in all things around you with your adorable big eyes wide open. Mommy was having a hard time because I was still so worried about your fast breathing. You just kept panting away like a little puppy dog, and it was near impossible to ignore. We tried to do so, however, as we were told by the doctors that it would go away and that you would be just fine! So out we went. One of your first parties was Jeff Koning’s graduation party. You were only two weeks old and oh so tiny! Everyone commented on how cute and handsome you looked. You were dressed in a navy blue and brown outfit and did so well at your first event, eating and sleeping through most of it J. Mommy and daddy also took you on our first family date night where we walked through the Redlands “Market Night” farmers’ market, and ate dinner at Chipotle. We ran into several friends and again, everyone loved seeing you. I have to say, it is so much fun for mommy and daddy to show you off! We are just so proud of you.
Fast forward to 4 June, 2011. Our dear friend Laura and her adorable daughter Amelia came for a visit that day and made us a delicious lunch. It was a lovely time of catching up, and so good to have company over. We adore them. The whole time, however, Liam wasn’t eating as well as he had been and was pretty drowsy, although on and off. In my mind I just kept attributing his different behavior to the fact that we had company over, that being a change in our normal routine. My heart was still unsettled, despite my attempts to speak logic into my own self. I walked our friends out to their car, and when I closed the door behind myself after returning to the apartment I burst into tears. I told Casey that Liam “just isn’t right” and that he was acting odd. And at the same time I am questioning my own assessment, as how well can anyone really know their three week old baby? Pretty well. Pretty well.
3:00 pm on the dot is when the crying began. And not just Liam’s normal “I’m hungry” cry, or his “I don’t like having my diaper changed” cry, but a shrill cry that came along with an arching back and a dark red, purplish face. I have never seen a newborn cry so hard, and I hope I never do again.
Sweet one, mommy and daddy tried everything we could think of to soothe you. You didn’t want to eat, which was uncharacteristic of you, and so we tried rocking, bouncing, singing, playing, walking, shhhhhing, swaddling, and driving. Your cry stayed steady… loud, shrill, and the saddest sound we had heard up to that point. Mommy cried right along side you as I felt I was failing you miserably, unable to soothe you. Daddy stayed strong for us both and was calm and steady in his efforts to comfort you. We eventually took your temperature and you were 100.2, 0.2 degrees from having an official fever. We rechecked you a little later and there it was… 101.4. And my little puppy dog, you were panting away…
By this time it was a little after 6:00pm. That’s right, over 3 hours of watching our baby wrestle. I started crying, again, and Casey repeatedly helped redirect me so that we could focus on the immediate task at hand, getting Liam to the ED. At least we knew our way…
We were rushed right to the back, as any baby under 28 days with a fever is taken very seriously as they are immunosuppressed and can deteriorate rapidly. Dr. Kim’s words from previous ED visits repeat over and over in my mind: “Chelsea, think of Liam like one of your hem/onc patients. He doesn’t have an immune system right now.” I have lost more immunosuppressed patients to various infections than I care to recall, so Dr. Kim’s words were far from comforting. Liam’s fever had risen to 101.5 and he had not eaten well since 10:00am, so he was dehydrated also. We were set up in a room and the attending physician came to see us soon after. He explained to us what tests were necessary to ensure that we have covered all our bases in an attempt to find a cause for Liam’s fever. I knew what this would include from our previous visits, but hearing him say to us that he had to do a lumbar puncture (spinal tap) on our 3 week old baby was too much for me to handle. He explained that his concern was for bacterial meningitis which can lead to permanent brain damage and/ or death. I just held onto my crying son and sobbed alongside him. My throat felt completely closed off and I wasn’t able to form sentences. I am crying and shaking, my throat tightened, as I type out this memory. I thank the Lord for giving Casey strength when I had none. He stayed steady through and through.
When Casey walked off with Liam to hold him down for a chest x-ray, I found a phone to call the only other people that I can truly fall apart with besides Casey… my parents. And fall apart I did. I was in hysterics describing to them what we had already been through that day, and all that our baby boy was going to have to endure that night. My mom and dad were to me just what I needed… calm, encouraging, reassuring, and beyond sympathetic. My dad got busy and arranged for a flight for my mom to fly south the very next day. Again, I have no words to express the depth of our gratitude for the display of active, selfless love shown to us throughout this entire experience.
The next several hours brought several pokes for our little one for IV access and blood draws, another urinary cathetar to obtain a urine sample, and a spinal tap with no pain medication or anesthesia. When the resident walked into our small ED room to discuss the details of Liam’s spinal tap, I asked him who would be performing the procedure. He said that he would be doing it, and soon thereafter left the room. As soon as we were alone I looked at Casey with swollen eyes and told him that I wasn’t comfortable with a new resident (I knew his experience level because I had worked with him) trying his hand at a lumbar puncture on our 3 week old son. In came the attending and I asked him how many LPs his resident had done. His answer was 5. And then I followed by asking him how many he had done. His answer: “I’ve lost count.” I asked him to please be the one to perform the procedure and he graciously agreed. This brought some degree of comfort, knowing that Liam was in very experienced hands.
Liam, mommy couldn’t let you go. I wanted to comfort you more than anything, but you were still crying and clearly not feeling well. At this point you hadn’t eaten in over eight hours. When it came time for the doctor to do your back poke, mommy had to leave as I was not strong enough to watch you be in such pain. Your daddy was so strong and stayed with you the whole time. All of the nurses kept saying how brave you were and how you held so still. I am so proud of you, sweet pumpkin.
It seemed like an eternity waiting for the saline bolus to finish, so that the spinal tap could be performed, so that antibiotics could be administered. It had to happen in that order, and every minute felt like an hour. Finally the nurse brought in a syringe filled with the medicine that would heal our son. Thank you Lord for antibiotics! Within an hour of receiving his first dose Liam calmed and the crying slowed. He still wasn’t interested in eating, but at least would rest on my chest. This alone brought such comfort.
Midnight rolled around and we were transferred to the NICU. The team of physicians greeted us there and explained that the LP results will take 7 days to come back with a final read, and that they will update us on any positive blood or urine culture that could explain a cause for his fever. Upon reaching our assigned area, we saw an isolette waiting for Liam. (An enclosed plastic box with holes in the sides to reach your hands in to touch the baby for those not familiar with them). The nurse explained that it was necessary to test Liam for MRSA (a “super bug”) and that he would have to stay in the isolette until the test results came back, which usually took three days. Needless to say, I lost it. (As if I hadn’t already done so previously). I did not think I had any more tears left to shed, but more kept flowing. Liam hunny, you were only 3 weeks old and mommy couldn’t stand the thought of not being able to hold you, rock you, or nurse you. You had finally reached a calm state, as I believe your tiny body was completely pooped out from crying hard all day. After much questioning and protesting, mommy had to place you in the isolette and stroke your face and tummy through the holes in the side of the box. You continued to be brave even though mommy and daddy couldn’t hold you. You knew your body needed rest, and rest you did. And you were finally hungry, so mommy pumped milk and gave you your first bottle. Down it went. Although it was breaking my heart to not be able to hold you and nurse you when you were so sick, I was beyond happy to see you eating, even if it was from a bottle. You hadn’t had milk in so long. I asked the nurse, as well as her charge nurse, if I could breast feed Liam since this is how he had been eating at home, promising that I would put him right back in the isolette once we were finished. My request was met with a firm no, despite the doctor telling the charge nurse to allow me to do so. “Policy”, he said…
So there we three were. Casey and I stood over our sleeping baby, reaching our hands in and out to touch our son. I kept crying, as I was still in disbelief that we were where we were. Casey, as always, was a rock for me. Steady, he remained. Logical and strong, he is.
As if we weren’t traumatized enough by the previous happenings of the evening, we were informed by the nurse that the NICU does not allow parents to sleep at the bed side. The tears escalated once again. My mind was racing… You mean to tell me that not even one of us can stay beside our sick son? After all we’ve been through today you actually think I am going to leave his side? I was in shock. I hadn’t been away from Liam for more than a few minutes in his entire life, and that was only to use the restroom or take a shower. I had been watching him like a hawk for 3 weeks, counting his respirations repeatedly, watching his breathing patterns, taking him to the doctor’s office and emergency department multiple times, and now here we were finally getting treatment and I was told that I had to relinquish the role of monitoring him… we had to trust someone else to do this. This, I was not prepared to do. It took the nurse and Casey telling me several times over that I could not stay for it to actually sink in. After stroking Liam’s cheek and telling him how much I loved him through thick tears, Casey practically carried me away from our son, as I did not have the will power to leave on my own. We walked to the car, empty handed. We’ve never felt so incomplete. We were greeted by an empty car seat in the back of the car, and my pumping sessions that night were the most painful, emotionally, I’ve had. Sweet baby, even though I knew in my head that you were being watched by competent nurses, my heart was breaking being away from you. Mommies just want nothing more than to comfort their babies when they are sick, and it was awful not being able to do this for you. I am sorry that I had to leave, sweet boy. You were so brave and the nurse said that you drank your milk very well that night! We are so proud of you.
0700 meant that we were allowed to be at the bed side once again. We were there not a second later. A new day meant a new nurse, so of course I asked her if I could take Liam out to nurse him, so long as I put him right back. “Of course you can. We always let nursing moms do that!” You can only imagine what was going through my mind at this point. So much sadness that I was told differently the night prior, that I wasn’t able to stay and comfort our sick baby. And also extreme excitement that I would be able to take him out of the isolette, if only for a little while. Needless to say, I quickly learned to extend the nursing sessions, burp for a looooong time, and put him back to the breast for a little bit more, as this was the only snuggle time allowed. I am pretty sure that the nurses were on to me, but they didn’t say anything, so Liam and I just kept on with this rhythm and soaked up every second we were with each other.
Casey continued to be the incredible husband that he is, tending to the needs of our baby son and his emotionally unstable wife. This day was the last of his break before he would plunge back into the routine of school again. And seeing that I was barely taking the time to go to the bathroom without a gentle reminder from him, we were beyond grateful that my mom flew in later that day to help relieve Casey of some of his load. She is exactly who we needed to help carry us through the valley we found ourselves in.
We very soon were told that Liam’s blood culture grew a bacteria called gram positive cocci in pairs and clusters… a horrible type of bacteria that has taken the lives of more than a few of my patients. This knowledge terrified us, as it seemed to be a waiting game to see if Liam would continue to respond positively to antibiotic therapy. The physicians remained positive, but definitely were honest about the possibilities, including the bacteria spreading to his brain and/or taking his life.
I have never known a darker time as when my baby was ill. I have never walked though a deeper valley or been overtaken by such intense fear as when Liam was septic. Facing the possibility of losing Liam was too much for me to bear. The only, ONLY, thing I could focus on was our son, and everything else went out the window. I am ashamed to say that in this state I did not find myself running to the throne of our Maker. I did not cry out to God for help, for Him to heal Liam. I honestly do not even remember praying on my own. I simply could think of nothing else besides our son. When tears of fear would begin to form my mom would repeatedly take my hands and begin praying, lifting up my son to his Maker, praying for rapid healing and for strength for his mommy. It was the prayers of others that carried us through, I firmly believe. I know that God held us three through the entire experience in His mighty hands, giving us strength and comfort to get from one hour to the next.
Thank you, Holy Spirit, for interceding on our behalf. Thank you, Father, for holding me tight when I gave you nothing.
It is as it is written: “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.” Romans 8:26-27
Hunny bunny you were in the NICU for 2 weeks and you were SO very brave every day! You had countless pokes for new IVs as you are a wiggle worm and your IVs didn’t stay good very long. Mommy cried right alongside you for every IV start except the last. Your little face would turn purple you cried so hard, and I just wanted to take the pain away for you. You lost a little weight in the beginning, but quickly started gaining again as you felt better. You received ampicillin around the clock and we give all glory to God for saving your life with this medicine! Daddy read stories to you every day. He snuggled and rocked you most nights until 1 or 2 in the morning so mommy could go home and sleep a few hours, and then mommy came back each night to sleep on a camping mat in the waiting room so that I could be there to feed you when you were hungry. Mommy had several lectures from the nurses about how important it was for me to go home and rest for a whole night, but I just couldn’t leave you. I would have slept beside you if they would have let me. Liam, when I close my eyes I can picture your tiny little self all curled up on your tummy in your hospital crib. You were so warm, so pink, so soft, and the sweetest sight I have ever seen. Daddy and I still can’t believe that we are so lucky as to be your parents. I do believe every nurse commented on how big you were! You were around 10 pounds or so at the time, which was roughly 3 times the size of most of the other babies in the NICU. The nurses weren’t used to seeing babies with any chub! Grandma called you the “king of the nursery.” We gave you baths in the pink hospital basin… you almost filled the whole thing! One of my favorite memories of you at this age is when I would lay you on my chest and you would lift your sweet head up, looking at me straight in the eyes as if to tell me that you knew I was your mommy.
14 long days later we were deemed safe for discharge. Liam had completed his course of IV antibiotics (minus a few doses that had infused into his bedding instead of his vein… you can imagine how thrilled I was about that), Casey and I had completed the mandatory discharge education class preparing us for life at home with a post-NICU baby, and our couple dozen frozen breast milk bottles were packed on ice and ready to be transported home to our freezer. The camping mat was rolled up, bags packed, and Liam securely placed in his car seat. What an odd mixture of emotions I remember experiencing… thrilling excitement that we were so blessed to be leaving the NICU with a healthy baby, sadness for the tiny babies and their families that were not able to go home yet, anxiety about entering the world and its accompanying germs with our recently septic son, and nervousness about having to return to the hospital, seeing that this was, after all, our third visit in just 5 weeks.
My amazing in-laws helped ease our transition home as they had driven down to prepare our apartment for our return. Floors were mopped, carpet vacuumed, laundry washed and folded, and meals prepared. Thank you, Pops and Steph, for these acts of love.
We had been informed by Liam’s pediatrician that he would have to be worked up for an immune system disorder should he acquire one more infection, seeing that the bacterial infection he had is not often seen in babies born via caesarean section and from mothers who are negative for GBS. And so we received strict instructions from Dr. Rao as to how to best prevent Liam from getting infected again: Liam was not to be brought into crowds, or crowded areas such as the grocery store, Target, etc., Liam should not be around other children as children are often sick, Liam should not be held by many people and certainly not anyone with any symptoms of illness, Liam was not to touch our cat or anything that our cat had touched, such as a blanket or toy. Toys that fell on the ground were to be washed prior to giving them back to Liam to be played with, and so on and so forth. We brought home hospital gowns for visitors to wear in the early days so that Liam would not pick up anything on their clothes, and had a water bottle full of the hospital soap for guests to “scrub in” with prior to holding our son. We were to carry on with these rules until Liam reached 4 months of age, at which point we would reconvene with Dr. Rao and either be told that further testing was required, or that Liam was in the clear and deemed a healthy baby.
So there we were. Ecstatic to be home with our sweet son, and terrified that he would get sick again. I should clarify: I was terrified that Liam would get sick again. Casey is so very logical about almost everything, a wonderful balance for the emotional woman that he married. Although he remained somewhat guarded, he believed Liam’s infection to be a freak accident sort of situation that should not happen again. He stepped foot on the road to healing far before I did, and thank God, because I needed him to pull me up on that road and carry me the entire way.
Almost everything was viewed as a threat to our son’s health in my mind. Linus, our cat, would walk in from outside where his cat box is and I would track his steps, thinking that there was no way that I could ever lay Liam on the carpet without shampooing the area ten times first. Sweet strangers on the sidewalk in front of our apartment would stop to talk to Liam and stroke his tiny hand. Immediately we were back in the NICU from some bacteria he had picked up from their kind touch, in my mind. Leaves and grass that I was longing to have Liam stroke, just to feel the beauty of God’s creation in his hand, were threats as well as all I could think of were the animals that may have contaminated that particular plant, the particles of who-knows-what that may be on the leaf that I chose to show Liam. Any coughing or sneezing within earshot was enough to make my heart rate increase and throat close up a little. And the list goes on… My fear of Liam becoming ill again grew, and grew, and grew.
Liam and I spent the next few months snuggling, gazing at each other, reading stories, going on walks, and learning one another. Seeing as I was not allowed to bring him into crowds or meet up with other children, we were a tad isolated, to say the very least. We were saved by two friends, in particular. Katie is our neighbor and dear friend who is one of the most present and actively supportive friends I have ever known. She visited Liam and I regularly, and still does, and made us feel not so isolated or forgotten. And then there is Leslie. Leslie’s baby Nora is 2 weeks younger than Liam and these two ladies have become such wonderful friends of ours. As Liam got a little older I bent the rules a tad and had Leslie and Nora come over to play with us (or have the babies happily lay on their backs or nurse while we women chatted). I will treasure these times together in my heart forever, as it was this connection that played a huge role in my healing process. Having a newborn is the most wonderful, yet challenging adjustment in life I have experienced. And it is difficult enough without the addition of having a sick baby and all of the ramifications that come along with that. Katie and Leslie were (are) friends that allow me to be me in all my glory when I am with them. In those early months especially I needed friends to come alongside me and just let me be worried, concerned, fearful, tearful, and whatever other emotion I may have been experiencing. These two ladies were just that. Treasures, they are.
Baby Liam, although it is beyond ridiculous that mommy has taken so many months to write this story down, I am glad that I can tell you now how far we’ve come together. You have always been such a sweet boy, loving your momma no matter how crazy and paranoid I became. Your daddy is so steady, and I do believe that you are just like him in this way. You both are great role models for me in this sense.
Liam Vincent, when you were in mommy’s tummy I would pray over you every day, that you would know your Maker’s voice, His face, His touch already even before you were born. I would pray that you would come to love Jesus at an early age, and that you would have His eyes to see people how He does, and sensitive ears to listen to others how God would want you to. Liam, I also would daily pray over every body system of yours, one by one, asking that God would be knitting you together in a healthy manner so that you could experience this life on earth in the fullest sense. Being that I see sick little ones frequently at work, I was (am) fearful that you would have to go through something similar. When you became ill, one of my worst fears was realized. I would sing to you over and over, and over, and over…
Jesus loves you this I know
For the Bible tells me so
LITTLE ONE TO HIM BELONG
You are weak but He is strong
Yes, Jesus loves you
Yes, Jesus loves you
Yes, Jesus loves you
The Bible tells me so
And although I was singing to you, I was also reminding myself that you belong to the One who knit you together. It is to the Lord that I give my praise for healing you and bringing us to the point we are now. I find myself staring at you several times a day in awe, of the incredible baby that you are and the sweet little boy that you are growing into, and the fact that you are still here for us to love on. A miracle, you are, sweet one. Take you for granted? I think not.
I am regularly faced with the scary reality of how fragile life is due to the nature of my work. And although it has mostly made me a paranoid freak of nature, it also has given me a deep appreciation for every day we are alive. My 8 year old patients have a better perspective on life than many adults I’ve come across, and it is from them that I have learned. The phrase “It’s all relative” holds true in the sense that I am fully aware that the pain, worry, angst, and fear we experienced when our wee one was ill is nothing compared to the grief some parents find themselves wading through. I vividly remember sitting on the couch in front of Liam’s bassinette, watching his little chest rise and fall far too quickly, and reading updates on our friends’ sweet baby boy, Easton, who was having to be so brave in the NICU as he fought for his life. Half of me was terrified that Liam would soon be following in Easton’s footsteps, and the other half of me felt ashamed for even feeling sorry for myself for having a mildly sick son when Easton was so very ill. We are so grateful that Liam never had to face a fraction of the challenges that precious Easton did, and simultaneously sick that Easton had to experience all that he did. His parents are two of the strongest people we know. Sweet Easton is snuggling with Jesus in Heaven right now, and although I know this brings some comfort to his mommy and daddy, I simply cannot, not for one second, imagine the pain that their hearts have felt.
Baby Liam, mommy and daddy could not be more grateful to have you in our lives. We are well aware that each and every day, each moment really, with you is a gift. We do not take you for granted and we give thanks to the Lord for bringing you into our lives. How thankful we are that He so intentionally designed wonderful, incredible, fabulous you. We love you boo boo.