June 28, 2013

Til' death do us part: answered prayers

**This is the third post to a long series.  If you would like to read from the beginning, you can find that post here.  If you haven't yet grabbed a cup of coffee from reading the previous posts, may I suggest taking a moment to do so now...or at least stretch your legs? Up to you.  In my very first post of this series I mentioned, "...the last time I posted seems a lifetime away." It would have been more accurate to say it was a lifetime away. **

David and I woke the next day, Monday, April 29, refreshed, still full of hope.  Our son was now a week old!  How could a week have passed so quickly?  Samuel had changed so much in those seven days.  His cheeks and chin filled out, he was sleeping easier, and his hair--oh, his beautiful, thick head of dark brown hair--was lightening to this beautiful amber.  Everything about him was amazing to me.

We made our way through our usual morning routine--grabbing some breakfast, spending a few minutes in prayer, scrubbing up--and then visited our little Samuel.  He was still sleeping quite peacefully.  It was so nice to see him comfortable.  Perhaps much of his comfort was due to the fact that we had started him on Baby Beano a couple days ago (David and I suspected that he was experiencing severe gas, to which anyone can attest being the cause of great discomfort.  Poor little guy just needed some relief!  The very sweet neonatologist offered some gas medicine, and voila! Problem solved).  Samuel's continued tranquility brought David and I great peace of mind.  We were also pleased that the IV weaning process continued to go well.  The ratio of breast milk to IV fluid continued to increase, putting Samuel closer and closer to being fed my milk exclusively.  This success was partly due to the fact that he had started a continuous feed.  Rather than being fed a large meal (about 60 mL) every 3 hours, he would now receive 21 mL every hour at a steady flow.  The hope was that Samuel's digestive system could better handle the smaller amounts (imagine eating several small meals a day rather than three ginormous meals) and that his glucose levels would finally even out.  So far, it seemed to be working!  I joked with his nurse that if Samuel were feeding at breast, he would definitely be a snacker, requesting food every 20 minutes.  It was much less exhausting to satisfy his constant need for food via a tube!  ;-)

Even though Samuel was making progress, we still didn't have answers to what was causing his condition.  The doctors and specialists continued to work hard, researching, hypothesizing, testing.  We were still a long way from being able to take Samuel home.  David and I decided it would be helpful to make a trip to our house to grab a few of our things, perhaps a few more clothes, take care of a few business-like items.  We didn't want to leave Samuel alone, so David offered to make the trip himself.  We confirmed with the nurse that there weren't any meetings with specialists scheduled, then David kissed Samuel and me goodbye.  Hurry back, David!  We don't like being with out you!  

I was pretty nervous to be alone with Samuel.  Of course the nurses were there, but I relied so much on David.  Our combined parenting felt much more secure than doing it alone.  If I was being pushed over the edge by the intensity of the NICU and temporarily couldn't be there for Samuel, David would step in, and vise-versa.  But, it would be no different if we were at home.  When David would go back to work, I would be alone with Samuel.  I would have to muster up all the courage, patience, and selflessness I could manage.  Today, I would do the same.

After David left, our nurse let me know that Samuel would be receiving another little test that morning: an electroencephalography (EEG), or a brain activity scan.  I've always been fascinated by how the brain works.  In the past, I studied the effects of music on the brain and how the brain's sensory processes function.  Today, while providing a loving, comforting presence to my baby, I could get a tiny lesson in lower-brain functions--how cool!  The neonatal EEG technician was spectacular (yes, there is a neurology sector that specializes in newborns and premies, who knew?).  She gently placed each electrode on Samuel's head, careful to not hurt his sensitive skin.  The process to connect all 24 took just about an hour, during which Samuel generally didn't fuss.  In fact, he was quite content to have this nice lady continue to rub his little head.  I should note that the previous day we had discovered that one of the most effective methods of soothing Samuel was to hold him snug against our bodies in one arm like a football and massage his head in a circular motion with the other hand.  You could just see his satisfaction as his eye brows raised every so slightly and his mouth dropped open....ohhh yeaaahhhh.... :)

Once all 24 electrodes were connected, the technician wrapped his head snugly to keep them in place.  As she was doing this, Samuel laid still.  I was smiling as his peaceful state when suddenly his alarm went off.  I glanced at the monitor and saw his oxygen sat levels had plummeted sharply, suddenly.  In the past, I had seen him recover on his own.  But I had only ever witnessed these drops when he was fussing, as if the sudden drop in oxygen levels was a result of him not taking in enough air while crying.  Here, the drop was random.  And he wasn't recovering.  The saturation level dropped lower, and lower, and lower.  I started to panic.  What is going on? Oh no, what's happening to my baby?  He's turning so gray! Why isn't anyone coming over to check on him? Aren't there any nurses around?  Please, come help!  I turned around, wondering where the heck a nurse was to help me with Samuel.  There was one nurse in the area, preoccupied with another baby.  Fortunately, I had developed a good rapport with her throughout our week in the NICU.  I looked at her, desperate for help, "Samuel doesn't look very good, do you have a sec to come help?"  She rushed over and concluded that yes, indeed Samuel was hungry for oxygen and his little body couldn't seem to recover on its own.  The nurse grabbed the blow-by oxygen and held it over his face.  Come on, Samuel, perk up. Come on, baby. Don't die, baby. What the heck?!?!  My heart was racing.  My eyes darted between Samuel and the oxygen sat numbers on the monitor.  Come up. Come up. Come up. Come on, just come up already!  It took all the courage in the world to hold myself together, to not freak out, to put my trust in the nurse and God.  God had given us the opportunity for superb medical care, and this nurse was a shining example of that medical care.  Focus on that.  Samuel's numbers began to climb.  Slowly, but they were climbing.

Finally, after what seemed like an eternity, though it was probably only one minute, Samuel's sats were back in a "normal" range.  What. The heck. Was that?!?!?!  Why did my baby's oxygen levels suddenly drop like that, unprovoked?  He was breathing, wasn't he?  He wasn't fussing.  He seemed perfectly normal--well, he was Samuel's normal.  Shaking, I thanked the nurse for her assistance.  She offered her reassurance.  It's okay now.  The technician returned to wrapping Samuel's head.  We chatted about what had just happened.  Gently, she disclosed one of the reasons for the test, "We'd like to see what the brain is doing during these sudden drops, or spells.  I bet you don't want this to happen, but I am hoping he has another spell in the next hour."  Another deep breath, I comforted myself, remembering our constant prayer: 

Lord, thank you so much for the gift of Samuel, for Your love, for our capacity to love.  We ask that you bless the doctors and nurses as they continue to work as hard as they can to find answers.  And Lord, please help us find the answer.

I stayed to watch the first few minutes of the test.  My stress level had seriously increased within the last 15 minutes, I hadn't pumped in nearly four hours (I was pumping every 2-3 hours), and Samuel seemed to be okay again.  I decided to take the next hour to pump and get some lunch.  I really couldn't wait for David to return.    

When I returned to Samuel's bedside, the tech had completed the EEG without experiencing another oxygen spell.  Samuel's assigned nurse had finished her lunch and was finishing up changing Samuel's diaper.  This was the same nurse who had been working with Samuel since Saturday.  She was there when we got his eyesight diagnosis, the mom who saw his eye color.  She was there to help us get the gas medicine.  She encouraged us to try the football hold/head massage combo.  And she was the nurse who suggested to the doctor that we put Samuel on a continuous feed.  I trusted her with everything.  I explained what I had witnessed, how it had scared me.  She was so comforting, reassuring.  She never once said, "Samuel could outgrow this," but she did say that the doctors were continuing to work hard an find out why Samuel was experiencing these spells and therefore be able to find a way to help Samuel. She then took the next few minutes to train me in using the blow-by machine.  If Samuel had another spell while I was around, now I had the ability to help him.  

I spent the next hour rocking Samuel while I waited for David.  It was bliss, rocking my son, humming to him.  His face was so relaxed.  His head had a few remaining marks from the EEG hidden among his thick hair.  My love for him continued to grow deeper and more unconditional with every minute I spent with him.  I just knew that whatever it was causing Samuel's condition, whatever his high-needs would ultimately be, we would figure out a way to thrive.   

While we were rocking, Samuel's nurse came by to see when David would be back so we could meet with the geneticist.  I said 4:00 PM should work great, David would be back soon.  With just under an hour until our meeting, I laid Samuel in his crib and kissed his forehead before leaving to quickly pump.  Sitting quietly in the pumping room, I pondered what we would learn in this meeting.  I felt excited and afraid at the same time.  Could we possibly have results from the DNA tests this quickly?  If so, what would we learn?  Will David and I truly be able to handle caring for a high-needs child?  As I finished, David texted that he had returned.  He brought our nursing pillow, one of Samuel's blankets and a little crucifix from home to use at Samuel's beside in the NICU.  I gave my milk to Samuel's nurse, then followed her and David into the meeting room.  The geneticist and neonatologist on call were both waiting for us.  Looking forward to answers, hand in hand we sat down. 

Samuel's nurse closed the door.  After quick hello's, the neonatologist informed us that we had some test results come back.  The geneticist began: 

"Samuel has Trisomy 13."

Shock.  Instant tears.  Suppressed gasps.    

"There is no easy way to say it.  The DNA tests showed he has three copies of the 13th chromosome.  It is full trisomy.  As you may already know, Trisomy 13 is incompatible with life."

We did already know.  Trisomy 13 is very similar to Trisomy 18. 

"I honestly didn't think this would be Samuel's diagnosis, as I told you last week.  He shows very few signs of the syndrome. But it is.  It is Trisomy 13."

Silent breaths, silent tears, taking it all in.   

"Do you have any questions for me?"  

I looked at David, a tear rolling off the tip of his nose.  He looked back at me.  Our baby boy, our son, our perfect Samuel was not going to survive.  We thought learning our son would never see was hard. I gave David space to ask a question.  He closed his eyes as if to say no, then I thought of something: "Why didn't he miscarry?" 

The geneticist welcomed the question, responding, "Generally, that is the case.  But some babies, though rare, do make it to term.  Those that are born with Trisomy 13 or 18 don't live past the first few days of life.  Of those that do, less than 5% make it a full month.  Of those babies who live a month, only 1% will make a year.  Past that, it's truly unknown."

More silence.  More processing.

"Why doesn't Samuel exhibit many of the typical symptoms?"

"We can't be sure why Samuel's trisomy is so subtle.  But as with any baby, each case is unique.  Here is some detailed information about Trisomy 13.  Feel free to read through it, or not."  The geneticist handed us a thick packet, then continued, "We can't say how long Samuel has to live.  But we are putting together a palliative care team to help you make decisions regarding his remaining days."  

I asked, "What kinds of things will we need to decide?" This was all so foreign to me.  Neither David nor I had ever been the party responsible for making decisions at the end of someone's life.  We had no idea what to expect, what decisions needed to be made, let alone what would be ethical.  

The doctor explained we would need to decide how much medical intervention we would want for Samuel, ranging from doing everything imaginable to extend Samuel's life to doing absolutely nothing at all, which would include removing the feeding tube, oxygen support, everything.  He expanded on that by saying most families choose to simply make the last days of their loved one's life as comfortable as possible.  We would work with the palliative care team to help us decide what that might look like.  As long as we needed it, the medical staff would provide as much support as we wanted, as we needed.  

We thanked the doctors.  Before we parted ways, we asked if it was okay to have a priest come and baptize Samuel as soon as possible.  We had to get him baptized so that he could return to Our Father in Heaven.  There was nothing more important right now.    

"Of course.  Anything you want."

We shook hands and the doctors left.    

Samuel's nurse hugged us.  Tears in her own eyes, she said, "You asked such great questions, and you know the first thing I thought of when you asked why Samuel didn't miscarry?  I know in my heart it is because God wanted Samuel to meet you, for you to meet Samuel." She then left the room for David and me to be alone.  We broke down.  Sobbing.  Holding each other.  Shaking.  Completely and utterly heartbroken with the diagnosis.  But it was an answer.  We got an answer before it was too late.  God heard us, he answered our prayers.  We now had the answer to the cause of Samuel's condition.  

Over the next hour, we focused on communicating the diagnosis to our immediate families.  I texted my dad to see when he was going to be home from work.  I wanted him and my mom to be together when we broke the news.  He replied with too late a time for my liking, so I requested he go home now.  We called the hospital priest to request a baptism as soon as possible.  We called David's parents.  Short, sweet.  Not much to say.  We called both of my sisters.  Both were several states away with full-time jobs and too far to be able to fly home any time soon.  We called Samuel's god-father, our future brother-in-law.  We called David's brother and sister-in-law.  We called David's sister.  And finally we called my parents.  We worked through the tears, then let them know we were going to have Samuel baptized tonight.  My parents lived only 30 minutes from the hospital, and our hope was they would come up for the baptism.  It was our plan, three months prior to his birth, to have Samuel baptized on Father's Day.  To have all his family and friends around him.  Obviously, that plan had to change.  If my parents could at least be there with us...at least there would be a representation of the entire community that loved Samuel so much. 

We had a plan in place.  For this evening at least.  We attempted to choke down some food, and as per the usual ritual, pausing before hand to pray, to thank God for finding an answer, asking that we continue to be blessed with the grace, strength, courage, and understanding we would need to live out the path God had laid before us.  After dinner, I needed to pump--my ability to produce milk was still vital to Samuel.  No one knew how long he would continue to need food.  Meanwhile, my parents arrived at the NICU and were waiting in the family room.  When I was finished, David and I went to Samuel's bedside.  His peaceful face showed no signs that he would die.  Death seemed truly unrealistic when you looked at him.  But it was a reality.  We were not going to let this new reality wasn't change the way we lived our life with our son.  Just as we had for the past week, David and I would continue to savor each and every second with Samuel.  He was our gift from God, for however long.  How could we not treasure each and every moment? 

David and I laid our hands on Samuel.  We shed tears over him.  We kissed him.  We blessed him with the Sign of the Cross.  It was 8:00 PM, about the time that the priest said he would stop by for the baptism.  I went out to the family room to see that the priest had in fact arrived, whom along with my parents I welcomed back to Samuel's beside.

Typically the NICU doesn't allow more than three people at a time, including parents, to visit the babies, but our rules had suddenly changed because of the circumstances.  Our night-time nurse had positioned a privacy screen around Samuel's sleeping area.  The priest requested some sterile water for the Sacrament of Baptism and permission to use the Holy Chrism, a wonderfully scented oil used in the Sacrament of Confirmation.  Father instructed me to hold Samuel with his head in the center of our circle while David held a soft towel under his head.  After an opening prayer and scripture reading, Father baptized Samuel in the name of the Father, and of the Son, and of the Holy Spirit.  My heart was so heavy, so conflicted.  I was disappointed that Samuel had to be baptized like this, in the NICU.  I was scared about facing Samuel's demise and ultimate death.  But I was also filled with joy that our son was now free from original sin, completely pure in spirit, and would return directly to God's loving embrace as a saint.  The priest continued the ceremony with the Sacrament of Confirmation, confirming that he received the Sacrament of Baptism.  He anointed Samuel's forehead with the Holy Chrism, "Samuel, be sealed with the gift of the Holy Spirit."  

We concluded the ceremony, wiping away our tears.  My parents hugged us, my mom cupped her hand around Samuel's sweet little head.  My heart swelled with gratitude that my parents could be there.  They took pictures of the three of us.  We then asked the nurse to take pictures of all of us.  Afterward, my mom asked if she could hold Samuel.  Typically, this would not be allowed.  But again, these were not typical circumstances.  I place Samuel in his grandma's arms.  I have never felt so much joy, so much pride.  To see my mom as a grandma, to give her a grandson.  The depth of her tears I will never fully know.  My dad stood next to her, gazing at little Samuel.  I didn't mourn for myself, that I would be losing my firstborn child.  I did feel sorrow, guilt perhaps?, that my parents would be losing their first grandchild.

That night, I learned something about my dad, that his Hebrew name is Shemu'el, or Samuel.  In choosing the name "Samuel David" we were very intentional about the connection to family and strong Biblical roots, but from what we knew the name came from David's side.  Samuel David is of course my husband's namesake, but that would also make Samuel his great-grandfather's namesake, for David was named after his maternal grandfather.  But David's grandfather was nicknamed "Sam," an outcome of his life-time service in the air force.  Stories about Sam depict a man who was strong, independent, with a passion for life--an inspiration to David, and through the stories an inspiration to me.  We were inspired to consider the name Samuel.  It was a name that both David and I loved, why not combine it with David?  Both names would have a family tie, and both are reminders of two strong people from the Bible.  Samuel's name continued to prove to be perfectly fitting as we discovered his fighting, independent personality, but now even more fitting because his name ties to all of his family roots--his father's and his mother's.    

My mom placed Samuel back in his crib.  It was time to say goodbye.  She leaned down to kiss his head, fighting back tears.  My dad lovingly pressed his hand on Samuel's tummy, then turned with my mom to walk out.  David and I followed them.  We thanked them, hugged again, and said goodnight. 

David and I returned to Samuel and just as we had the nights before, we stayed late.  Rocking, holding, talking, even laughing.  The privacy screen made Samuel's space feel like a real room.  We soaked up every minute, both of us present, in the moment, so that we would never forget.  It didn't matter how many days we would have left with Samuel.  Every day that we would be given we would be sure to live to the fullest, to LOVE to the fullest.  

**To be continued: Til' Death Do Us Part**                 

June 26, 2013

Til' death do us part: life in the NICU

**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.

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:

"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.              

**To be continued: Answered Prayers**




June 20, 2013

Til' death do us part: a birth story

**I debated about whether or not to break this post into multiple posts and ultimately decided to break it up.  Each post is still quite long, so please, grab a cup of coffee (or two), hunker down and have a nice read (NOTE: it can get a little graphic, so if you're squeamish don't say I didn't warn you).  Over the next several days or weeks, I will share how I experienced God's miracles, mercy and grace.**

After many words of encouragement and questions about how I'm doing...I'm back.  The last time I posted now seems like a lifetime away.  So much has happened since then.  So much has changed.  I have aged in a way no 20-something should ever have to age.  

I first shared that the hubby and I were expecting back in October.  Not only were we embarking on a new adventure by adding a new life to our family, but we took a leap of faith by moving to the east coast.  No family, no friends.  Totally different culture from the west.  To top it all off, our situation was a trial run for David's career.  It was temporary.  The challenge of living day-to-day, not knowing whether or not we could stay comfortable at headquarters or if we'd need to pack up for one of David's business trips, was stressful.  But it was an amazing opportunity to "test" a different job, expand his professional network and experience the job before committing to it.  In the end, we both decided the job and the east coast weren't for us.  The biggest blessing to this opportunity was that if the job didn't work out David could return to his old gig back west. 

We missed our families.  We missed the landscape (read: the mountains).  We wanted to have our baby in the same area in which we grew up, the beautiful Pacific NW.  So, we packed up our headquarters one last time and flew home.

The move back was a whirlwind--just as much a whirlwind as when we first received our orders last June.  We quickly found a house, took our "baby-moon" in Maui, and moved in.  I was six months pregnant, David had to jump back into work.  We were so excited to finally be settling down!  Our baby would be here in about three months and we were filled with so much joy, anticipation, and fear about being "good enough" parents. :)  I imagine we were experiencing the typical roller coaster of emotions that first-time parents experience.

Slowly we completed the nursery.  My grandfather crafted a co-sleeper out of walnut for his third great-grandchild so that our baby could be in our room for the first several months.  I fretted over silly things like getting the perfect baby carrier(s), having options for strollers, which cloth-diapering system I would use, and limiting the amount of pthalates our baby would be exposed to.  In spite of my fretting, I maintained a healthy, low-risk pregnancy.  All my exams and ultrasounds were all that I could hope for--a healthy mom, healthy baby.  We were rockin' it.  David committed to being trained as a birthing coach to best help me give birth without any medication or medical intervention.  All signs pointed to smooth-sailing. 

Until 37 weeks... At 37 weeks my low-risk pregnancy went out the window.  My blood pressure spiked, which as anyone who's been pregnant knows, that's a scary thing to have happen.  Doctor's start throwing around the word "pre-eclamptic."  This kind of alarmist behavior irritates me so much that it increases my blood pressure even more!  At any rate, it was appropriate to take precautions.  I performed the 12-hour protein test, which came back high enough to confirm my doctor's concerns.  I wasn't quite pre-eclamptic, but close enough to be wary.  She ordered frequent non-stress tests (such an oxymoron).  Each test, my blood pressure continued to be high, but at least my baby was kicking some major you-know-what!  Baby L was an overachiever, with a heartbeat so strong that the nurses and my doctor didn't even bat an eye.  We were just going to focus on keeping me safe and healthy.  

But that meant we were talking "induction."  Oh boy... I couldn't have an induction!  My natural birth plan would have to go totally out the window!  For weeks, I had been unsure about the arrival of Baby L.  Would I be able to love our baby enough?  Would I have the patience, strength and courage to give our little one everything it would need?  Up until the induction word was being tossed around, I wanted the baby to stay put for as long as possible.  But God has an amazing way of taking care of us exactly in the way we need. 

At 38 weeks, a Friday, my blood pressure was even more a concern.  I was sent to the hospital for monitoring.  If my blood pressure didn't go down I would likely be induced that night.  Good thing I had been practicing relaxation techniques the last 11 weeks in my birthing class with David!  Within two hours I was sent home, but on one condition: bed rest.  Better than induction!  I'll take it.  

David was an incredible support.  He cleaned the house, stocked the pantry and fridge, cooked and packed for our hospital stay when we would birth our baby.  We very strongly suspected I would be induced that Monday after my next appointment.  We figured, best to be ready.  But as I said God has an amazing way of taking care of us.  Sunday night, at 38 weeks and 2 days pregnant, 12 days early, the day before I was likely to be induced, my water broke.  Oh my goodness, I can still feel the excitement that ran through me that night!  We were going to have our baby, we were finally going to meet him or her, and we were going to get to do it on the baby's terms, our terms: induction free! 

At that point we decided I was off bed rest.  I figured out how to--how do I put this--contain the mess that resulted from my water breaking, then quickly ate some dinner (good ol' PB&J :)), finished up last minute details around the house, packed the car, walked around the house to get my labor going, practiced relaxation with David one last time...oh, this was one of the most amazing feelings I have ever felt.  We were finally going to have our baby!!  David and I stood in the kitchen, looking around our house, then looked at each other, embraced. and said good-bye to the "us" that we currently knew.  When we would return from the hospital our two would be three!  

Labor was going smoothly.  By the time we arrived at the hospital my contractions were about 10 minutes apart.  I was allowed to walk around, labor in whatever position I wanted.  My blood pressure wasn't even in the "scary" range!  Hah.  Take that, doctor. :)  David was incredible.  With every contraction, he provided me physical and emotional support, reminding me to breath, relax every muscle in my body so my uterus could do it's job without resistance.  About six hours after my water broke, my contractions were roughly four minutes apart.  We were moving along quite nicely.  

The nurse came in to check on my contractions and noted that I was still in very early labor.  The contraction monitor was showing moderate contractions intermittently, nothing indicating my body was anywhere close to pushing out a baby.  David and I knew otherwise...but what do we know?  Our stop watch couldn't be compared to the medical monitor.  Our nurse asked if there was anything she could get for me.  As a matter of fact, yes please.  I was SO hungry!  Is there anything I could eat?  Our nurse was very helpful and brought us a selection of "goodies."  That is if you call processed food goodies :)  I could choose from a Cup o' Noodles, Fritos, applesauce, or a pressed ham and American cheese sandwich.  I decided the sandwich would do the trick.  Between contractions I scarfed it down.  David laughed and said, "Apparently you were hungry."  Yes.  Yes I was.  

While scarfing down my sandwich my contractions got even closer together.  The nurse observed my need to stop and focus on each contraction and decided it might be prudent to check the location of the contraction monitor on my belly.  Sure enough, as soon as she re-positioned it the needle moved up and down in three minute intervals.  I was sitting on the edge of the bed, leaning over my knees with each wave.  I rested my hands palms-up on my knees.  David held my hands, pressing his fingers hard into the palms whenever a contraction came on.  This little trick was great for helping me keep focused on relaxing every inch of my body, getting out of the way of my uterus.  David then asked for a bucket of ice water and a wash cloth.  Oh. My. Goodness. What heaven is this?!  The contractions seemed to be even more manageable when David wiped my brow with the icy cloth while pressing his other hand in my palm.  Isn't he amazing?  After a few contractions like this I decided I wanted to try laboring in the tub.  My friend had told me the water was an incredible relief for the pain, so why not try it?  

Well, I'm glad I tried it, but definitely not for me.  I had been so cold throughout labor, and the en suite bathroom was not heated.  Furthermore, I am fairly tall so laying in a standard tub is not...easy.  And to make matters even more challenging, my contractions were about 3 minutes apart, 90 seconds long.  This was just insane.  I was shivering, which of course doesn't help one relax.  I couldn't get comfortable.  I had enough of that, thank you very much.  Out of the tub I went.  And it's a good thing I did because shortly thereafter I was heading into "transition."  These are the last contractions that stretch the cervix from about 7 cm to the full 10.  It happens so quickly (generally within 20 minutes), and the contractions can feel like they are one on top of the other.  No breaks.  No time to re-focus.  I finally got dressed, and moved back to the edge of the bed.  David continued his coaching, encouraging me, praising my efforts all while wiping my brow with that oh, so wonderful icy cloth.  

Within a few contractions, I started to feel overwhelmed.  This pain was far more than I bargained for.  If these contractions kept up like this for a few more hours there was no way I could make it to the end.  I was screaming at David, "How can I relax, there are NO BREAKS!!!"  Our nurse continued her support, giving David a break and guided me through a meditation to help me focus.  That helped me regain my resolve, but man, those contractions were so intense!  I heard the nurse ask the assistant to get a table ready.  What?!  What is this "table"??  I was starting to feel like I couldn't do it anymore, but I really, really didn't want an epidural.  

One contraction later, I learned the nurse wanted the table to prep for delivery.  She performed a quick check of how far I was dilated--almost there, just have a little lip.  Yes!  "Ok," I thought, "Change positions for a few more contractions and I'll be ready."  I told David I had to move to the floor (yes, the nasty, cold, hard linoleum hospital floor), on all fours.  That just seemed to make sense to me.  As soon as I did, I took a deep breath waiting for the next contraction.  But it never came.  I could breathe!  I could finally breathe and take a break!  Oh, what sweet relief.  I realized I had gotten through transition...and then it came.  The absolute, undeniable, all-encompassing need to push.

At some point between checking my dilation and having that tremendous need to push, I heard the nurse tell me not to, she told the other nurse to call the doctor, and then turn again to me: I needed to wait for the doctor to get there.  For Pete's sake!  If you've ever delivered a baby, you understand that there is NO FREAKING WAY that you can't push.  David went into coaching mode again, helping me to breathe through each pushing contraction so that I didn't bear down.  I moved back to the bed, and the nurse decided it was okay for me to be serious about pushing.  I requested the squatting bar and got to work.  

After a few contractions squatting, I was exhausted--apparently all my squatting exercises weren't quite enough to give me the stamina for this stubborn baby.  I decided I would try the classic position, sitting back on the bed upright while holding my knees to my chest.  Ahhhh, very effective.  The next contraction the doctor on call walked in.  He was so calm and gentle.  This was going to be a piece of cake!   

About 20 minutes into pushing, the fetal monitor picked up that Baby L was a little low on oxygen.  The nurse instructed David to grab the oxygen mask and to put it over my mouth and nose between pushing contractions.  What sweet relief!  With every contraction, I would breathe in, breathe out (1), breathe in, breathe out (2), breathe in and hold while I pushed with everything I had, bearing down...until finally!  His head was at the opening.  The nurse asked if I wanted to touch its head.  Wow, so much hair!!  So very close!  Two more contractions and our baby crowned.  Some people told me this would be the most painful part of the entire labor.  I disagree.  It was a relief!  Baby was crowning, I just needed to control the next push.  Slowly, gently to ease any tearing that might occur.  There!  The head was out.  One more push and the body would be completely out... Oh, my goodness, I did it!  Nine and half hours of laboring, 45 minutes of which were pushing, I had birthed my baby free of medication and most medical intervention.  

I heard a tiny cough-like cry, and the nurse announced we had a baby BOY!!!!!  My heart filled so full I thought I would burst.  I insisted our son be put on my stomach right away.  He was beautiful, tiny, and what seemed to me as being so very fragile.  The baby's nurse came over to do the quick once-over checks, temperature and color primarily.  I asked to wait to cut the cord until it stopped pulsing to protect our son's heart.  David was praising me, in total awe of our son.  He was completely and totally consumed with love for the both of us. The doctor asked if David wanted to cut the cord, to which he responded (and to my surprised) with "okay". :)  I was proud of accomplishing what I set out to do, overjoyed that we had a son, amazed at what David and I created together, and yet...concerned.  Our baby's cry wasn't very strong.  As I gazed at him lying there on my stomach, he was pretty gray, squirming a bit, but not much.  Having never birthed a child before, I didn't know what was normal and what wasn't.

The nurse then said it: he's not really pinking up so we're going to move to the warming table.  David didn't leave our son's side, talking to him, loving him.  I delivered the placenta, still away from my baby, not exactly sure what was going on, but confident that David was doing all that he could.  Then I heard one more line, worse than the first...  The nurse explained that our son needed to be taken down to the nursery because he wasn't breathing very well on his own.  Ok.  Deep breath.  I can handle that.  David would be with him.  Everything was going to be okay.  

I had to focus on taking care of myself for the time being.  I knew that because I hadn't received an epidural I could walk very soon.  The doctor stitched me up.  The nurse took a few tests.  In about two hours I was up and walking.  I got cleaned up, and headed immediately down to the nursery.  I needed to see my son, see that he was okay.   

Each step I took was slow, deliberate.  I couldn't believe how sore I was, but I had to get to my baby.  I walked in and immediately saw David standing over him across the room.  The sight was amazing.  My husband as a father.  Words cannot describe how remarkable this is.  Here was a man that now, in addition to loving me with all his being, was determined to do everything he could to protect his son.  To be there at all costs so to make the best decisions for him, to be there to comfort him with a gentle voice and warm touch.  David was a dad.  I walked up to him, we hugged and tears started falling.  David asked me what I thought we should name him.  We had chosen two names for a boy, now it was just a matter of deciding which name best fit our son.  I looked at him, tears in my eyes and not a single doubt in my mind.  Our son would be Samuel David.  A strong name for our little fighter.  David nodded in full agreement.  We hugged.  We cried.  Our Samuel just had to be okay.  

Hours went by.  Samuel's oxygen saturation levels were just not holding at the percentages the doctors (pediatricians) wanted.  His temperature took a great deal of encouragement to come up to the usual 98.6.  David told me the nurses also had to give him an IV to get his glucose levels up to normal.  Once the pediatrician gave Samuel his baby exam, we learned even more strange news.  Samuel had two extra digits (one on each hand), a butterflied vertebrae, and a poor gag reflex--just a few things that on their own wouldn't have meant a thing.  But his inability to regulate his breathing even a few hours after birth combined with these funny abnormalities made our pediatrician question if there was something much more than just underdevelopment.  Little did we know that her instincts would turn out to be right, and that this was just the beginning of a very, very long road ahead of us.

**To be continued: Life in the NICU**