**This is the second post to a long series, so long that I would advise hunkering down with a cup of coffee and having a nice read. If you would like to start from the beginning, feel free: Til' death do us part: a birth story.**
Hours went by as Samuel's pediatrician scoured her resources, researching, trying to find answers. We paced, tried to keep a positive mindset, talked with our parents, prayed, held our Samuel... all so emotionally draining. By noon that day, a little over seven hours after Samuel was born, his pediatrician strongly recommended that we be transferred to a NICU, 45 minutes south of us. There were too many subtle oddities about Samuel's condition and no clear answers. Her hope was that the availability of some of the best specialists in the region could help us solve the mystery. She was going to check for availability at the NICU hospital, call for a transport unit and request an early discharge for me, "And please, get some food and meet with the lactation consultant so that you can start pumping."
We were so numb. So exhausted. Upset, confused, worried, scared out of our ever-living minds. Eating felt pointless. Our son needed us. He needed our love, our support, our courage. David spent more time with Samuel. I learned about the production of my milk supply and how to pump. We packed our things, took showers, and prepared to be discharged. We thanked God for the blessing of Samuel, thanked Him for such amazing doctors and nurses, thanked Him for my good health so that I could be discharged early. And we thanked God for providing spectacular medical care. The NICU did in fact have a space for Samuel. We could get some of the best care in the entire region.
Around 3:00 PM, Samuel's transport team arrived with what looked like a device designed for space travel. The team brought him to our room to say good-bye before loading him into the ambulance. If there has ever been a time I can say I felt helpless is was that moment, watching my baby boy being wheeled away from me. It didn't even feel like he was my son. If he were my son, shouldn't I be holding him, feeding him, kissing him? I took a deep breath, refocused and hugged my husband. It was time to go be parents, even if it wasn't in the way we expected.
David grabbed our bags and confirmed we had all our paperwork. We took a moment to say good-bye to the place we birthed Samuel, just as we deliberately said good-bye to "us" when we left our house for the hospital several hours ago. I glanced at the white board noting our information: Beth & David - Baby Boy, April 22, 4:37am 6 lbs. 15 oz. 19"... If only those stats were all that Samuel was. David and I held each other, more silent tears streaming down our cheeks. Why were we the ones living this nightmare? No answer could satisfy, of course... we turned. And walked out.
A nurse led us to the front of the hospital. The last time I stood in the lobby was not even 24 hours prior. I was checking in, butterflies of excitement in my stomach. Now, I stood again in the lobby, looking out toward the parking lot. If I walked out with all our bags but no baby in tow then this nightmare would be confirmed. It would be real. We turned back to the nurse who hugged us and offered her prayers. After another deliberate, deep breath we walked out of the labor and delivery hospital without our baby.
Even though our pediatrician told us to eat, we still hadn't. So on our way home to pack for our trip to the NICU we stopped at Subway. My amazing husband was so exhausted from being awake for nearly 36 hours, so emotionally drained, so stressed, we both were, but David didn't have the hormones and adrenaline from just delivering a baby. So while he took a quick break in the car I went in to order our sandwiches. As I was checking out, the clerk commented that it looked like I'd been poked a lot today. I was confused at first, then looked down at my wrists. I still had all my hospital bands and bandages from where blood was drawn! I chuckled and responded, "You know, funny story. I just delivered my baby nine hours ago." God truly designed a tough species, us humans. :)
A few hours later we finally arrived at the NICU. I couldn't wait to see Samuel, but so badly wished we didn't have to be there. Why couldn't Samuel be the boy all of us, including the doctors, expected?
We entered the NICU unsure of what it would be like. I remember ringing the security bell and stating I was Samuel's mom. That was the first time I said those words out loud, and they didn't come out very easily. I was a little surprised about my hesitation saying those words--shouldn't it have been natural? Shouldn't I have known exactly why I was at the NICU? There was a little boy, Samuel, in there who needed his mom. That was me. Why was that so strange? I couldn't dwell on it much. I was going to continue to experience strange moments of motherhood that I would have never been able to anticipate, and right now I really just needed to get in there and give my son my love.
After scrubbing up and completing a health screening, we finally got to go in an see our son. It was shocking. So many machines. Bells. Tubes. Premies. And there was our Samuel. In the middle of it all. He was so huge compared to the rest of his company. He looked so out of place. He looked like nothing was wrong with him. But we knew he needed the canula for oxygen support. He needed temperature monitors. An IV. A heartbeat monitor. A respiratory monitor. So many things just to keep him alive. How could this possibly be? Is this the same baby that I carried for nearly nine months? The feisty, strong and active little one from the ultrasounds? My shock was going to have to be addressed later. Now, I needed to learn all I could about what we knew of Samuel's condition, learn all I could about how they were helping him, and most importantly learn how to be in the NICU.
Most people, including us until now, don't know what NICU doctors and nurses do. Some people believe they get to hold babies all day until they get better and some believe these people simply see death every day of their careers, that the NICU is merely hospice care for newborns. We were going to learn that these doctors and nurses use every piece of knowledge, experience and research to try and help struggling babies survive in the world as unassisted as possible. Our education started in a meeting with our first neonatologist. He welcomed us to the hospital and found a private space to talk (there weren't too many in our NICU). In this conversation we learned there was so much more to the few oddities found while at our birth hospital. We learned Samuel had a VSD in one of the internal walls of the heart--undetectable by the prenatal ultrasound technology used at the 20 week appointment, or at any point of the pregnancy. Furthermore, upon confirming his weak gag reflex, the doctors found that Samuel had a slightly raised palate (the roof of his mouth), that this could make it difficult for Samuel to be able to swallow. We learned Samuel's body was in fact struggling to manage his glucose levels, but more notably, struggling to manage his cholesterol levels which were low. These symptoms along with several others led the neonatologist to hypothesize that Samuel's body wasn't producing hormones correctly, that perhaps there was something awry with his pituitary gland. We discussed the possibility that Samuel's issues could all be due to a genetic syndrome or disorder, and what that could mean should a genetic syndrome be confirmed. The list was really quite long--or perhaps it just felt long because I was so overwhelmed. I never in my wildest dreams thought my first act of parenting would be making life-saving decisions for my child.
Our meeting ended and we returned to Samuel's beside. I looked at my son, so tiny, perfect. As I gazed at him the tears started once again, my heart pounding, aching as if an elephant were standing on my chest. Whatever was going on with our son, at least we were in the right place to find the answers. David leaned over to kiss Samuel's sweet little forehead. Good night, Samuel. May God bless you. I love you. I, too, kissed Samuel good-night. We then left for our own beds, two buildings away from our son. So much for sleep-sharing and being woken up by our newborn's coos.
The building two blocks away was a house that provided lodging for families at the hospital, much like a Ronald McDonald house. Once we settled into our room, we cried, screamed, shook with anger, called our families trying to explain the situation to the best of our abilities. Finally, nearly 30 hours after I had gone into labor...we crawled into bed and cried ourselves to sleep.
Over the next week, Samuel received countless tests. Every day was a roller coaster, but not the amusing kind. It was the kind where you can't see where you are going, the twists and turns are violent and you don't wear a safety harness. When we woke up after our first night we took our time getting to the NICU. We dreaded having to go into that hospital. David and I attempted to eat breakfast, picked up my breast pump rental, scrubbed up and then finally saw Samuel. Upon our good-morning we saw he had been transitioned to a baby CPAP, which would hopefully help his lungs function on their own in about a day. The day also included a meeting with the geneticist. This specialist was the most urgent specialist to see Samuel, which was made clear in our meeting with him. He suspected a variety of syndromes but nothing could be confirmed for sure without getting DNA test results back from the Mayo Clinic and other labs throughout the country. This of course would take days, likely weeks.
Meanwhile, tests continued to be done trying to eliminate or confirm the neonatologists' theories. I chuckle now at the list of specialists, there were just so many!: pediatric cardiologist, pediatric speech pathologist, geneticist, pediatric endocrinologist, pediatric neurologist, ophthalmologist, and the list goes on. Keeping all the names and roles straight was the easiest part of being in the NICU. If only that didn't have to be the easiest part.
When tests weren't being taken, when we weren't meeting with the specialists, David and I spent time with Samuel. At first, I was too overwhelmed by the situation and didn't know how to provide motherly support. I couldn't pick him up whenever he wanted to be held--too many cords and the nurses said he was likely overstimulated. I couldn't change his diaper outside of his schedule--the nurses had to weigh his diapers to keep track of how much food he was processing; how well was his digestive system working? I couldn't nurse him--his weak gag reflex and inability to breathe on his own made the process of "suck, breathe, swallow" all very dangerous for him. It was so heartbreaking to see Samuel constantly upset, pissed that he had all these tubes and wires attached to him, and I couldn't do a thing to comfort him.
But he was able to communicate with his daddy and me. David and I laughed at Samuel's attempts to remove all the equipment. It was as if he was thinking, "What the heck, people? Get these silly things off me!" :) Just like in my womb he would punch and kick, and with great gusto at that. Don't you dare get in his way when he's not happy--he'll knock you into next week! His little clenched fists wouldn't fit inside his mouth, but he so badly wanted them to. He'd mouth for food, knowing he was hungry. Sadly, we couldn't risk feeding him from breast. Samuel was feisty. He knew what he wanted and no one could tell him otherwise. The nurses all commented on this. David, being the humble man that he is and not wanting to take credit ;-) laughed saying, "Don't look at me! It's all her," then pointed my way. Yes, unfortunately for the nurses Samuel was definitely his mother's son.
.jpg)
Initially, we thought we'd be at the NICU for maybe four nights--that maybe we'd get to go home on Friday. With every day spent there, we soon learned a definitive day to go home was not going to be a possibility any time soon. Wednesday we met with a speech pathologist who informed me Samuel had a soft cleft palate in addition to the raised palate. It wasn't likely Samuel was going to be able to feed on his own without special therapy. It was too soon to definitely declare feeding at breast was out of the question, but it wasn't looking like it would be an easy task.
That night, I broke down. It was the longest, hardest day I had experienced in my life--coming to grips with the fact that our son was going to have so many issues that we never could have expected. Remember, our ultrasounds and tests were all very positive. There was nothing that indicated our little one would have so many issues! Now that we did have this high-needs baby, I couldn't understand how I could be given such a daunting task! And it wasn't just a task. From what I was learning, it would be a life-long endeavor to care for Samuel. After a few hours I realized this was just perception. My mom reminded me of a beautiful saying: "I know that God won't give me more than I can handle, but why does he have to trust me so much?" Yep. Totally agree--why is God trusting me so much? I haven't any previous experiencing proven I can handle a high-needs baby! But regardless of what I thought, God did entrusted this beautiful soul to David and me because he supposedly saw our faith, saw our ability to love and therefore God must know we could handle it. We had nothing else to rest on but our faith. And we would certainly need to rely even more on our Lord, turning to Him for strength, courage, patience, wisdom... If God was there for me, then I couldn't let Him down. I couldn't let Samuel down. And I just loved Samuel SO. VERY. MUCH. All I wanted to do was give him everything I could to make his life easier. I would find the strength. Through God's grace, I could be strong enough to both deal with my emotions and give every ounce of me to caring for my son.
The next day, Thursday, was beautiful. The sun was warm, the skies were blue, and Samuel was peaceful. He'd been swaddled, had learned to love his pacifier, there were no tests scheduled for the day. Zero. Samuel was free from any respiratory support, and he was going to start receiving my pumped breast milk through a feeding tube so that we could start weaning him off the IV. Today we felt things were calm enough for us to comfortably participate in care times. Every four hours we changed his diaper, meconium and all (I was seriously afraid I would miss out on changing those newborn diapers filled with meconium. I so badly wanted to be a part of that!), took his temperature, weighed his diaper, and occasionally took a heel stick to test his glucose levels. David and I took turns holding him. Even though Samuel had developed jaundice (much like many perfectly healthy newborns), his therapy didn't prevent us from being able to hold him. Rather than being placed under a phototherapy bed lamp, Samuel was wrapped in a Bili-blanket. While most of my plans about caring for our newborn were not being met (scheduling our baby was NOT in the plan, nor was the IV, the monitors...David used to tell me, "All plans are subject to change, and those that aren't do." Oh, how true), at least the Bili-blanket did follow the plan. Score! We spent as many hours as we could in the NICU that day. It was almost like we were a normal family.
Friday was a little more challenging. Okay, a lot more challenging. Early in the day, the nurse informed us that the neonatologist on call thought we should try putting Samuel to "dry" breast (just after pumping dry), just to see if he could handle suckling and breathing; we wouldn't add in the need to swallow just yet. This was so exciting! I might be able to experience the bond of nursing after all! But as soon as I soared high into the sky, high on my joy and hope, we learned an MRI had been ordered to take place that morning so the doctor's could confirm whether or not Samuel had a pituitary gland (remember, the funky hormone levels made the docs a little suspicious). Going to breast would have to wait until after, if not be postponed until another day. The MRI took much longer than planned. Furthermore, upon his return Samuel was no longer the peaceful Samuel we said good-bye to before the test. He was absolutely irate. All methods of comfort to which he'd previously been responding had no effect. His nurse suspected he was startled by the very loud tests done at the end. Over-stimulation. Of course. Then we definitely shouldn't expect that holding Samuel would bring him comfort.
Our nurse then suggested giving the dry-breast a try--in a typical mother-infant relationship nursing can be a great source of comfort. Excited, though a bit uneasy, I got myself ready and met with the lactation consultant by Samuel's bed. Here we go! While I was certainly hoping this experiment would go well--that Samuel would be able to transfer his sucking skills learned on the pacifier to my breast--I was prepared to accept if it did not. There was an inkling in my gut suggesting now wasn't the time to try, that this moment was too stressful, that Samuel was too overstimulated to be introduced to a brand new scary thing. But I went ahead with the experiment anyway. I held him close, secure against my chest, and offered him the "nipple sandwich." At first, he just cried--he was so stressed. Then I was able to help him to latch, for about two seconds. Another cry. Soon our little Samuel was even more inconsolable than ever. I had the lactation consultant directing my next move, my mother's intuition telling me another thing, Samuel crying, and then his alarms started to go off. The day before we learned that the bells were not always accurate--that most of the time, they were false alarms. David gently suggested this was a false alarm, don't worry. Stay calm, focused and patient so Samuel can rely on his mom. The bell stopped, briefly. Not even a minute later it started again. A nurse on duty, who was also a respiratory therapist, came over to see if this was truly an alarm. Upon observing Samuel's behavior and the monitor, she concluded our little guy was in fact struggling to keep his oxygen saturation levels up...but I thought we'd gotten passed this! She reached for a canula and turned on the oxygen. Once again, our little man needed respiratory support.
By this point, David and I were pretty agitated, shaken up. The nurses had swarmed over to monitor his progress on the oxygen. The space around his bed was crowded. Bells were still going off. There was nothing we could do to help our son. I was starting to feel engorged and letting down, an automatic biological response to Samuel's crying. So frustrated, David and I said a quick good-bye to Samuel and left. It was this moment that David and I realized the value of having a good rapport and trusting the nurse(s) that were working with Samuel. We had never met the ones who had just swooped in. Our usual nurse that day, whom we'd learned to trust very deeply, had been on her break. These strangers in charge had never worked with Samuel, didn't know his story let alone his personality. How could they be so presumptuous in thinking Samuel could handle such a scary task and then when he couldn't, completely take over? I was just so angered by this, feeling pushed into trying the dry-breast when my own instincts had suggested it wasn't the right time. I was mad at myself for a poor motherly judgement call.
I spent the next half hour pumping and thinking about what had just happened. I had just experienced a very normal occurrence of parental doubt--shouldn't I be happy that at least I'd been experiencing some parental moments? But my moments were in response to extreme circumstances. My baby had been stressed out by scary sounds during his MRI. He became further stressed when we tried introducing the dry-breast. No amount of comfort could help him stop crying. Just like any other baby, uncontrollable crying makes it pretty difficult to breathe and get enough oxygen. Crying and crying, his oxygen levels started to drop. Frustratingly, Samuel's body was not strong enough to withstand that oxygen drop or to help him recover. It was this reality that triggered a heavy, overwhelming ache throughout my body. It was that intense feeling of contempt over having been dealt this hand. Trembling and sobbing, the pump continued its rhythmic duty. I leaned back in the chair, frustrated that a machine had to milk me, exhausted by the roller coaster of emotions. When, God, when will this nightmare end? Please, just let me feel Your grace, Your mercy, that I may have the strength to continue offering every ounce of love to Samuel, to be there for him, regardless of the circumstances.
The machine finally finished its work and I bottled up my son's milk. I suddenly felt genuine pride when I noted how many ounces I pumped, despite my distress--a full three ounces in one sitting after only five days of pumping! Samuel was only receiving roughly two ounces every twelve hours in conjunction with his IV. This was an awesome accomplishment, to be able to provide the best nutrition possible for my son. At least I could offer that, if nothing else. With a renewed sense of purpose, renewed strength, I reconvened with David to visit our son.
Samuel had finally calmed down and his nurse had returned. She asked how we were doing, and after hearing what had happened she suggested that perhaps trying the dry-breast after the MRI may not have been the best timing after all. Samuel was clearly stressed, and since he wasn't able to calm down long enough to breathe regularly, he likely became "air-hungry." Perhaps he was taken off the oxygen and CPAP a little too soon. Perhaps he needed that support a little longer to allow his body to learn how to recover from a heavy crying episode. But now, with the return of the oxygen support--on the lowest level--he was more comfortable. He could breathe a little easier again. If I wanted, we could try dry-breast again tomorrow. I was definitely not sure of that...my gut told me Samuel needed to be in a calmer space before trying such a daunting task (remember, "suck, breathe, swallow"), and I wasn't sure we could get that while in the NICU.
David and I were totally exhausted. While Samuel slept, finally in a place of relaxation, we scurried off to find dinner and a bit more courage. This entire week had thrown us curve ball after curve ball. We had so badly hoped to be going home by now. Instead, that hope was being pushed further and further away. Per our usual mealtime routine, David and I paused at our table before digging in. David led us in prayer:
David grabbed our bags and confirmed we had all our paperwork. We took a moment to say good-bye to the place we birthed Samuel, just as we deliberately said good-bye to "us" when we left our house for the hospital several hours ago. I glanced at the white board noting our information: Beth & David - Baby Boy, April 22, 4:37am 6 lbs. 15 oz. 19"... If only those stats were all that Samuel was. David and I held each other, more silent tears streaming down our cheeks. Why were we the ones living this nightmare? No answer could satisfy, of course... we turned. And walked out.
A nurse led us to the front of the hospital. The last time I stood in the lobby was not even 24 hours prior. I was checking in, butterflies of excitement in my stomach. Now, I stood again in the lobby, looking out toward the parking lot. If I walked out with all our bags but no baby in tow then this nightmare would be confirmed. It would be real. We turned back to the nurse who hugged us and offered her prayers. After another deliberate, deep breath we walked out of the labor and delivery hospital without our baby.
Even though our pediatrician told us to eat, we still hadn't. So on our way home to pack for our trip to the NICU we stopped at Subway. My amazing husband was so exhausted from being awake for nearly 36 hours, so emotionally drained, so stressed, we both were, but David didn't have the hormones and adrenaline from just delivering a baby. So while he took a quick break in the car I went in to order our sandwiches. As I was checking out, the clerk commented that it looked like I'd been poked a lot today. I was confused at first, then looked down at my wrists. I still had all my hospital bands and bandages from where blood was drawn! I chuckled and responded, "You know, funny story. I just delivered my baby nine hours ago." God truly designed a tough species, us humans. :)
A few hours later we finally arrived at the NICU. I couldn't wait to see Samuel, but so badly wished we didn't have to be there. Why couldn't Samuel be the boy all of us, including the doctors, expected?
We entered the NICU unsure of what it would be like. I remember ringing the security bell and stating I was Samuel's mom. That was the first time I said those words out loud, and they didn't come out very easily. I was a little surprised about my hesitation saying those words--shouldn't it have been natural? Shouldn't I have known exactly why I was at the NICU? There was a little boy, Samuel, in there who needed his mom. That was me. Why was that so strange? I couldn't dwell on it much. I was going to continue to experience strange moments of motherhood that I would have never been able to anticipate, and right now I really just needed to get in there and give my son my love.
After scrubbing up and completing a health screening, we finally got to go in an see our son. It was shocking. So many machines. Bells. Tubes. Premies. And there was our Samuel. In the middle of it all. He was so huge compared to the rest of his company. He looked so out of place. He looked like nothing was wrong with him. But we knew he needed the canula for oxygen support. He needed temperature monitors. An IV. A heartbeat monitor. A respiratory monitor. So many things just to keep him alive. How could this possibly be? Is this the same baby that I carried for nearly nine months? The feisty, strong and active little one from the ultrasounds? My shock was going to have to be addressed later. Now, I needed to learn all I could about what we knew of Samuel's condition, learn all I could about how they were helping him, and most importantly learn how to be in the NICU.
Most people, including us until now, don't know what NICU doctors and nurses do. Some people believe they get to hold babies all day until they get better and some believe these people simply see death every day of their careers, that the NICU is merely hospice care for newborns. We were going to learn that these doctors and nurses use every piece of knowledge, experience and research to try and help struggling babies survive in the world as unassisted as possible. Our education started in a meeting with our first neonatologist. He welcomed us to the hospital and found a private space to talk (there weren't too many in our NICU). In this conversation we learned there was so much more to the few oddities found while at our birth hospital. We learned Samuel had a VSD in one of the internal walls of the heart--undetectable by the prenatal ultrasound technology used at the 20 week appointment, or at any point of the pregnancy. Furthermore, upon confirming his weak gag reflex, the doctors found that Samuel had a slightly raised palate (the roof of his mouth), that this could make it difficult for Samuel to be able to swallow. We learned Samuel's body was in fact struggling to manage his glucose levels, but more notably, struggling to manage his cholesterol levels which were low. These symptoms along with several others led the neonatologist to hypothesize that Samuel's body wasn't producing hormones correctly, that perhaps there was something awry with his pituitary gland. We discussed the possibility that Samuel's issues could all be due to a genetic syndrome or disorder, and what that could mean should a genetic syndrome be confirmed. The list was really quite long--or perhaps it just felt long because I was so overwhelmed. I never in my wildest dreams thought my first act of parenting would be making life-saving decisions for my child.
Our meeting ended and we returned to Samuel's beside. I looked at my son, so tiny, perfect. As I gazed at him the tears started once again, my heart pounding, aching as if an elephant were standing on my chest. Whatever was going on with our son, at least we were in the right place to find the answers. David leaned over to kiss Samuel's sweet little forehead. Good night, Samuel. May God bless you. I love you. I, too, kissed Samuel good-night. We then left for our own beds, two buildings away from our son. So much for sleep-sharing and being woken up by our newborn's coos.
The building two blocks away was a house that provided lodging for families at the hospital, much like a Ronald McDonald house. Once we settled into our room, we cried, screamed, shook with anger, called our families trying to explain the situation to the best of our abilities. Finally, nearly 30 hours after I had gone into labor...we crawled into bed and cried ourselves to sleep.
Over the next week, Samuel received countless tests. Every day was a roller coaster, but not the amusing kind. It was the kind where you can't see where you are going, the twists and turns are violent and you don't wear a safety harness. When we woke up after our first night we took our time getting to the NICU. We dreaded having to go into that hospital. David and I attempted to eat breakfast, picked up my breast pump rental, scrubbed up and then finally saw Samuel. Upon our good-morning we saw he had been transitioned to a baby CPAP, which would hopefully help his lungs function on their own in about a day. The day also included a meeting with the geneticist. This specialist was the most urgent specialist to see Samuel, which was made clear in our meeting with him. He suspected a variety of syndromes but nothing could be confirmed for sure without getting DNA test results back from the Mayo Clinic and other labs throughout the country. This of course would take days, likely weeks.
Meanwhile, tests continued to be done trying to eliminate or confirm the neonatologists' theories. I chuckle now at the list of specialists, there were just so many!: pediatric cardiologist, pediatric speech pathologist, geneticist, pediatric endocrinologist, pediatric neurologist, ophthalmologist, and the list goes on. Keeping all the names and roles straight was the easiest part of being in the NICU. If only that didn't have to be the easiest part.
When tests weren't being taken, when we weren't meeting with the specialists, David and I spent time with Samuel. At first, I was too overwhelmed by the situation and didn't know how to provide motherly support. I couldn't pick him up whenever he wanted to be held--too many cords and the nurses said he was likely overstimulated. I couldn't change his diaper outside of his schedule--the nurses had to weigh his diapers to keep track of how much food he was processing; how well was his digestive system working? I couldn't nurse him--his weak gag reflex and inability to breathe on his own made the process of "suck, breathe, swallow" all very dangerous for him. It was so heartbreaking to see Samuel constantly upset, pissed that he had all these tubes and wires attached to him, and I couldn't do a thing to comfort him.
But he was able to communicate with his daddy and me. David and I laughed at Samuel's attempts to remove all the equipment. It was as if he was thinking, "What the heck, people? Get these silly things off me!" :) Just like in my womb he would punch and kick, and with great gusto at that. Don't you dare get in his way when he's not happy--he'll knock you into next week! His little clenched fists wouldn't fit inside his mouth, but he so badly wanted them to. He'd mouth for food, knowing he was hungry. Sadly, we couldn't risk feeding him from breast. Samuel was feisty. He knew what he wanted and no one could tell him otherwise. The nurses all commented on this. David, being the humble man that he is and not wanting to take credit ;-) laughed saying, "Don't look at me! It's all her," then pointed my way. Yes, unfortunately for the nurses Samuel was definitely his mother's son.
Initially, we thought we'd be at the NICU for maybe four nights--that maybe we'd get to go home on Friday. With every day spent there, we soon learned a definitive day to go home was not going to be a possibility any time soon. Wednesday we met with a speech pathologist who informed me Samuel had a soft cleft palate in addition to the raised palate. It wasn't likely Samuel was going to be able to feed on his own without special therapy. It was too soon to definitely declare feeding at breast was out of the question, but it wasn't looking like it would be an easy task.
That night, I broke down. It was the longest, hardest day I had experienced in my life--coming to grips with the fact that our son was going to have so many issues that we never could have expected. Remember, our ultrasounds and tests were all very positive. There was nothing that indicated our little one would have so many issues! Now that we did have this high-needs baby, I couldn't understand how I could be given such a daunting task! And it wasn't just a task. From what I was learning, it would be a life-long endeavor to care for Samuel. After a few hours I realized this was just perception. My mom reminded me of a beautiful saying: "I know that God won't give me more than I can handle, but why does he have to trust me so much?" Yep. Totally agree--why is God trusting me so much? I haven't any previous experiencing proven I can handle a high-needs baby! But regardless of what I thought, God did entrusted this beautiful soul to David and me because he supposedly saw our faith, saw our ability to love and therefore God must know we could handle it. We had nothing else to rest on but our faith. And we would certainly need to rely even more on our Lord, turning to Him for strength, courage, patience, wisdom... If God was there for me, then I couldn't let Him down. I couldn't let Samuel down. And I just loved Samuel SO. VERY. MUCH. All I wanted to do was give him everything I could to make his life easier. I would find the strength. Through God's grace, I could be strong enough to both deal with my emotions and give every ounce of me to caring for my son.
The next day, Thursday, was beautiful. The sun was warm, the skies were blue, and Samuel was peaceful. He'd been swaddled, had learned to love his pacifier, there were no tests scheduled for the day. Zero. Samuel was free from any respiratory support, and he was going to start receiving my pumped breast milk through a feeding tube so that we could start weaning him off the IV. Today we felt things were calm enough for us to comfortably participate in care times. Every four hours we changed his diaper, meconium and all (I was seriously afraid I would miss out on changing those newborn diapers filled with meconium. I so badly wanted to be a part of that!), took his temperature, weighed his diaper, and occasionally took a heel stick to test his glucose levels. David and I took turns holding him. Even though Samuel had developed jaundice (much like many perfectly healthy newborns), his therapy didn't prevent us from being able to hold him. Rather than being placed under a phototherapy bed lamp, Samuel was wrapped in a Bili-blanket. While most of my plans about caring for our newborn were not being met (scheduling our baby was NOT in the plan, nor was the IV, the monitors...David used to tell me, "All plans are subject to change, and those that aren't do." Oh, how true), at least the Bili-blanket did follow the plan. Score! We spent as many hours as we could in the NICU that day. It was almost like we were a normal family.
Friday was a little more challenging. Okay, a lot more challenging. Early in the day, the nurse informed us that the neonatologist on call thought we should try putting Samuel to "dry" breast (just after pumping dry), just to see if he could handle suckling and breathing; we wouldn't add in the need to swallow just yet. This was so exciting! I might be able to experience the bond of nursing after all! But as soon as I soared high into the sky, high on my joy and hope, we learned an MRI had been ordered to take place that morning so the doctor's could confirm whether or not Samuel had a pituitary gland (remember, the funky hormone levels made the docs a little suspicious). Going to breast would have to wait until after, if not be postponed until another day. The MRI took much longer than planned. Furthermore, upon his return Samuel was no longer the peaceful Samuel we said good-bye to before the test. He was absolutely irate. All methods of comfort to which he'd previously been responding had no effect. His nurse suspected he was startled by the very loud tests done at the end. Over-stimulation. Of course. Then we definitely shouldn't expect that holding Samuel would bring him comfort.
Our nurse then suggested giving the dry-breast a try--in a typical mother-infant relationship nursing can be a great source of comfort. Excited, though a bit uneasy, I got myself ready and met with the lactation consultant by Samuel's bed. Here we go! While I was certainly hoping this experiment would go well--that Samuel would be able to transfer his sucking skills learned on the pacifier to my breast--I was prepared to accept if it did not. There was an inkling in my gut suggesting now wasn't the time to try, that this moment was too stressful, that Samuel was too overstimulated to be introduced to a brand new scary thing. But I went ahead with the experiment anyway. I held him close, secure against my chest, and offered him the "nipple sandwich." At first, he just cried--he was so stressed. Then I was able to help him to latch, for about two seconds. Another cry. Soon our little Samuel was even more inconsolable than ever. I had the lactation consultant directing my next move, my mother's intuition telling me another thing, Samuel crying, and then his alarms started to go off. The day before we learned that the bells were not always accurate--that most of the time, they were false alarms. David gently suggested this was a false alarm, don't worry. Stay calm, focused and patient so Samuel can rely on his mom. The bell stopped, briefly. Not even a minute later it started again. A nurse on duty, who was also a respiratory therapist, came over to see if this was truly an alarm. Upon observing Samuel's behavior and the monitor, she concluded our little guy was in fact struggling to keep his oxygen saturation levels up...but I thought we'd gotten passed this! She reached for a canula and turned on the oxygen. Once again, our little man needed respiratory support.
By this point, David and I were pretty agitated, shaken up. The nurses had swarmed over to monitor his progress on the oxygen. The space around his bed was crowded. Bells were still going off. There was nothing we could do to help our son. I was starting to feel engorged and letting down, an automatic biological response to Samuel's crying. So frustrated, David and I said a quick good-bye to Samuel and left. It was this moment that David and I realized the value of having a good rapport and trusting the nurse(s) that were working with Samuel. We had never met the ones who had just swooped in. Our usual nurse that day, whom we'd learned to trust very deeply, had been on her break. These strangers in charge had never worked with Samuel, didn't know his story let alone his personality. How could they be so presumptuous in thinking Samuel could handle such a scary task and then when he couldn't, completely take over? I was just so angered by this, feeling pushed into trying the dry-breast when my own instincts had suggested it wasn't the right time. I was mad at myself for a poor motherly judgement call.
I spent the next half hour pumping and thinking about what had just happened. I had just experienced a very normal occurrence of parental doubt--shouldn't I be happy that at least I'd been experiencing some parental moments? But my moments were in response to extreme circumstances. My baby had been stressed out by scary sounds during his MRI. He became further stressed when we tried introducing the dry-breast. No amount of comfort could help him stop crying. Just like any other baby, uncontrollable crying makes it pretty difficult to breathe and get enough oxygen. Crying and crying, his oxygen levels started to drop. Frustratingly, Samuel's body was not strong enough to withstand that oxygen drop or to help him recover. It was this reality that triggered a heavy, overwhelming ache throughout my body. It was that intense feeling of contempt over having been dealt this hand. Trembling and sobbing, the pump continued its rhythmic duty. I leaned back in the chair, frustrated that a machine had to milk me, exhausted by the roller coaster of emotions. When, God, when will this nightmare end? Please, just let me feel Your grace, Your mercy, that I may have the strength to continue offering every ounce of love to Samuel, to be there for him, regardless of the circumstances.
The machine finally finished its work and I bottled up my son's milk. I suddenly felt genuine pride when I noted how many ounces I pumped, despite my distress--a full three ounces in one sitting after only five days of pumping! Samuel was only receiving roughly two ounces every twelve hours in conjunction with his IV. This was an awesome accomplishment, to be able to provide the best nutrition possible for my son. At least I could offer that, if nothing else. With a renewed sense of purpose, renewed strength, I reconvened with David to visit our son.
Samuel had finally calmed down and his nurse had returned. She asked how we were doing, and after hearing what had happened she suggested that perhaps trying the dry-breast after the MRI may not have been the best timing after all. Samuel was clearly stressed, and since he wasn't able to calm down long enough to breathe regularly, he likely became "air-hungry." Perhaps he was taken off the oxygen and CPAP a little too soon. Perhaps he needed that support a little longer to allow his body to learn how to recover from a heavy crying episode. But now, with the return of the oxygen support--on the lowest level--he was more comfortable. He could breathe a little easier again. If I wanted, we could try dry-breast again tomorrow. I was definitely not sure of that...my gut told me Samuel needed to be in a calmer space before trying such a daunting task (remember, "suck, breathe, swallow"), and I wasn't sure we could get that while in the NICU.
David and I were totally exhausted. While Samuel slept, finally in a place of relaxation, we scurried off to find dinner and a bit more courage. This entire week had thrown us curve ball after curve ball. We had so badly hoped to be going home by now. Instead, that hope was being pushed further and further away. Per our usual mealtime routine, David and I paused at our table before digging in. David led us in prayer:
"Bless us, O Lord, and these Thy gifts, which we are about to receive from Thy bounty, through Christ our Lord, Amen. And Lord, please continue to bless Beth and I with your grace and mercy, strength and courage to withstand this journey, help us to see You in all things, help us to trust that You are always by our sides. We ask that you help us find the answers to whatever it is that Samuel is fighting. Thank you, Lord, for the gift of Samuel. Thank you for all that he is, for the love he has brought into our lives. Keep him safe. Amen."
Despite our clouded hope, David and I were each others' strength. When one of us felt weak, the other stepped up to provide strength. When one of us felt betrayed by God, the other reminded us of all His blessings. When one of us felt completely hopeless that we would ever be able to care for Samuel in the way he needed, the other would remind us that through God's grace we are strong, through the Holy Spirit we are gifted with wisdom, understanding, fortitude.
After dinner we visited Samuel one last time before heading to back to our lodging for some sleep. We would hopefully learn conclusive results about his pituitary gland the next day, getting us one step closer to having some answers.
That morning--Saturday, six days after Samuel was born--we planned to meet up with David's family who had come into town to meet the newest member. Before we did anything we stopped by to spend some time with our little boy. He was much more peaceful, rested from the craziness of yesterday. Soon after our arrival, we were greeted by the pediatric endocrinologist, the hormone specialist. The doctor shared that the MRI showed Samuel did in fact have a pituitary gland. Not only did the gland exist but the hormone tests taken earlier in the week showed his pituitary gland was functioning normally. Hooray!!! David and I let out a huge sigh of relief, but of course if his pituitary gland wasn't the problem...then what was? The doctor explained he could not yet understand why his glucose levels were still askew (hypoglycemic), perhaps this was an issue of the pancreas malfunctioning (possibly an overproduction of insulin, causing the repression of glucose). Only more tests would tell. Nevertheless, we thanked the doctor and joyfully thanked God for an answer. It wasn't the answer, but at least we were making progress toward discovering the cause of all Samuel's issues.
After lunch, we returned to the NICU with David's parents and sister. David waited with them while I went to check on Samuel briefly. Upon my hello, Samuel's nurse explained the ophthalmologist examined him while we were away. It would be best if we met with him and or the neonatologist as soon as possible. Suddenly, the fear and doubt I'd been burying all week flooded my entire being: I had not yet seen Samuel's eyes, he had never opened them to look at me. Was this normal for a newborn? My doubts had been saying no, but I couldn't possibly allow that to be true. David left his family in the waiting room while he and I met with the neonatologist on call regarding the eye exam. Standing next to our little Samuel, admiring his perfect face sleeping so peacefully, the doctor informed us that Samuel's eyes were difficult to open. Once they were opened, the ophthalmologist found that his eyes were quite small and severely deep-set. Furthermore, he was unable to find an iris or pupil, he could only see the eye pigment. Based on his findings, the doctor concluded it was likely that Samuel would never be able to see.
My whole body felt as if it were collapsing into a black hole. We thanked the neonatologist and continued our visit with our son. Our son who would never see our faces, who would never see the mountains that we so badly wanted him to experience, who would never watch a football game with his dad. I laid my hand on Samuel's beautiful head, leaned down to kiss his eyebrow, and let the tears fall. David cried beside me, his sweet mouth trembling. David had imagined teaching his son so many things about this world, much of which included seeing God's creation as David saw it. Now, his sweet son, our sweet Samuel, could not share in that experience. In a gesture of reassurance, offering what little comfort she could give, Samuel's nurse--also a mom--hugged each of us. Her own eyes filled with tears. She proceeded to offer more details about the exam. Once the ophthalmologist had opened Samuel's eyes, even though they were very deep set, she was able to see the color. Our little Samuel had beautiful blue eyes.
We updated David's family of Samuel's current diagnosis. At this point, the doctors believed his eyesight was not in relation to the rest of his quirks, but it was definitely a reality. Together, we cried. What a week. What a long, tumultuous week. Several wet tissues later, David and I took his family members back to meet Samuel one by one. It was absolutely amazing to see the love offered by my mother-, father-, and sister-in-law. There was no doubt in my mind that Samuel and all his needs was teaching us something about love that we had not yet experienced. About a love that is so deep and so unconditional. Perhaps this is the truest form of love--the love that God Himself intended all of us to experience? To love as God loves?
I truly saw God's grace, God's mercy, God's undeniable love for David and me at this point. We were not alone in this journey. We would find a way to help Samuel experience all that life on Earth had to offer through his other senses. There were plenty of people who learned to live--no, not just live, thrive--despite their blindness. Samuel could develop keen skills in mathematics and engineering. He could learn to play music, learning the notes and chords by rote. We could even teach Samuel to downhill ski, while taking certain safety precautions, of course. And we ourselves could learn to be courageous in the face of the unknown. As a family, we would all thrive.
With a renewed and stronger sense of hope, David and I started the next day with more energy than we'd had all week. Upon greeting Samuel in the NICU, we saw he had been transferred to a normal crib! The warming bed was no longer necessary--he was regulating his temperature all on his own. Not only was he in the crib, he had completed his phototherapy treatment. He'd been cured from jaundice! David and I smiled, laughed, hugged. We kissed Samuel over and over. Little Samuel continued to sleep peacefully, perfectly content swaddled in his new bed. Maybe he could get strong enough to come home sooner than we thought?
The day was filled with joyful connections between David, myself, his mom, dad and sister and our little Samuel. Later in the afternoon my parents arrived for a visit. They had visited a few times earlier in the week, but today--today was different. It was hopeful. I loved seeing my parents as Grandma and Grandpa. Samuel was their first grandchild, the first son in our nuclear family. And my parents' joy over this fact was contagious. After many hours of visiting, laughing, expressing our hopes for the future when Samuel would come home, we said good-bye to our families. David and I stayed with Samuel late into the night, holding him, rocking him, sitting together chatting away, very much like what we would have been doing if we were at home. Tonight we were at peace with needing to be in the NICU as long as it took for us to get an answer regarding Samuel's condition. We were at peace with the journey God had put us on. Close to midnight, we said a little bed-time prayer, just the three of us:
After dinner we visited Samuel one last time before heading to back to our lodging for some sleep. We would hopefully learn conclusive results about his pituitary gland the next day, getting us one step closer to having some answers.
That morning--Saturday, six days after Samuel was born--we planned to meet up with David's family who had come into town to meet the newest member. Before we did anything we stopped by to spend some time with our little boy. He was much more peaceful, rested from the craziness of yesterday. Soon after our arrival, we were greeted by the pediatric endocrinologist, the hormone specialist. The doctor shared that the MRI showed Samuel did in fact have a pituitary gland. Not only did the gland exist but the hormone tests taken earlier in the week showed his pituitary gland was functioning normally. Hooray!!! David and I let out a huge sigh of relief, but of course if his pituitary gland wasn't the problem...then what was? The doctor explained he could not yet understand why his glucose levels were still askew (hypoglycemic), perhaps this was an issue of the pancreas malfunctioning (possibly an overproduction of insulin, causing the repression of glucose). Only more tests would tell. Nevertheless, we thanked the doctor and joyfully thanked God for an answer. It wasn't the answer, but at least we were making progress toward discovering the cause of all Samuel's issues.
After lunch, we returned to the NICU with David's parents and sister. David waited with them while I went to check on Samuel briefly. Upon my hello, Samuel's nurse explained the ophthalmologist examined him while we were away. It would be best if we met with him and or the neonatologist as soon as possible. Suddenly, the fear and doubt I'd been burying all week flooded my entire being: I had not yet seen Samuel's eyes, he had never opened them to look at me. Was this normal for a newborn? My doubts had been saying no, but I couldn't possibly allow that to be true. David left his family in the waiting room while he and I met with the neonatologist on call regarding the eye exam. Standing next to our little Samuel, admiring his perfect face sleeping so peacefully, the doctor informed us that Samuel's eyes were difficult to open. Once they were opened, the ophthalmologist found that his eyes were quite small and severely deep-set. Furthermore, he was unable to find an iris or pupil, he could only see the eye pigment. Based on his findings, the doctor concluded it was likely that Samuel would never be able to see.
My whole body felt as if it were collapsing into a black hole. We thanked the neonatologist and continued our visit with our son. Our son who would never see our faces, who would never see the mountains that we so badly wanted him to experience, who would never watch a football game with his dad. I laid my hand on Samuel's beautiful head, leaned down to kiss his eyebrow, and let the tears fall. David cried beside me, his sweet mouth trembling. David had imagined teaching his son so many things about this world, much of which included seeing God's creation as David saw it. Now, his sweet son, our sweet Samuel, could not share in that experience. In a gesture of reassurance, offering what little comfort she could give, Samuel's nurse--also a mom--hugged each of us. Her own eyes filled with tears. She proceeded to offer more details about the exam. Once the ophthalmologist had opened Samuel's eyes, even though they were very deep set, she was able to see the color. Our little Samuel had beautiful blue eyes.
We updated David's family of Samuel's current diagnosis. At this point, the doctors believed his eyesight was not in relation to the rest of his quirks, but it was definitely a reality. Together, we cried. What a week. What a long, tumultuous week. Several wet tissues later, David and I took his family members back to meet Samuel one by one. It was absolutely amazing to see the love offered by my mother-, father-, and sister-in-law. There was no doubt in my mind that Samuel and all his needs was teaching us something about love that we had not yet experienced. About a love that is so deep and so unconditional. Perhaps this is the truest form of love--the love that God Himself intended all of us to experience? To love as God loves?
I truly saw God's grace, God's mercy, God's undeniable love for David and me at this point. We were not alone in this journey. We would find a way to help Samuel experience all that life on Earth had to offer through his other senses. There were plenty of people who learned to live--no, not just live, thrive--despite their blindness. Samuel could develop keen skills in mathematics and engineering. He could learn to play music, learning the notes and chords by rote. We could even teach Samuel to downhill ski, while taking certain safety precautions, of course. And we ourselves could learn to be courageous in the face of the unknown. As a family, we would all thrive.
With a renewed and stronger sense of hope, David and I started the next day with more energy than we'd had all week. Upon greeting Samuel in the NICU, we saw he had been transferred to a normal crib! The warming bed was no longer necessary--he was regulating his temperature all on his own. Not only was he in the crib, he had completed his phototherapy treatment. He'd been cured from jaundice! David and I smiled, laughed, hugged. We kissed Samuel over and over. Little Samuel continued to sleep peacefully, perfectly content swaddled in his new bed. Maybe he could get strong enough to come home sooner than we thought?
The day was filled with joyful connections between David, myself, his mom, dad and sister and our little Samuel. Later in the afternoon my parents arrived for a visit. They had visited a few times earlier in the week, but today--today was different. It was hopeful. I loved seeing my parents as Grandma and Grandpa. Samuel was their first grandchild, the first son in our nuclear family. And my parents' joy over this fact was contagious. After many hours of visiting, laughing, expressing our hopes for the future when Samuel would come home, we said good-bye to our families. David and I stayed with Samuel late into the night, holding him, rocking him, sitting together chatting away, very much like what we would have been doing if we were at home. Tonight we were at peace with needing to be in the NICU as long as it took for us to get an answer regarding Samuel's condition. We were at peace with the journey God had put us on. Close to midnight, we said a little bed-time prayer, just the three of us:
"Lord, thank You so very much for the amazing gift You have given us in Samuel. We ask that you bless the doctors and nurses that they may continue to provide Samuel with the tenderest of care, and that they may find the answer to whatever it is that ails him. Please bless and keep Samuel in the safety of Your loving arms. In Your name, we pray. Amen."
With a kiss and sign of the cross on his forehead, David and I left our little Samuel's side. Happy, content, hopeful about the days to come.
No comments:
Post a Comment