Reflections of Pregnancy and the NICU

Reflections of Pregnancy and the NICU

We found out that we were pregnant with Elizabeth in October of 2012.  We were very excited, especially since we had a miscarriage during the Fall of 2011.  I was very sick during my pregnancy with Elizabeth, which was not unlike my pregnancy with Celtan.  I just figured that I was one of those "lucky" women who was going to be sick for the whole nine months!  I was in the emergency room and hospital several times during my first and second trimesters getting anti-nausea meds and IV fluids to help keep the two of us feeling better. 

We were thrilled when we found out that we were having a girl. It was so exciting, and I had visions of tutus, ribbons, pretty dresses and all things girly in my head.  Jason and I decided that we wanted to name her after his mother, Evelyn Jeanne.  Jason's mom unexpectedly and tragically passed away from a very brief and courageous battle with lung cancer in November 2012.  We had told her that we were expecting Elizabeth before she passed away, because we wanted to be sure that she knew.  We didn't know at that time that we were having a girl, and so when we learned of the gender of Baby Hack #2, we wanted to honor Jason's mom by naming our daughter after her.  Jason and I wanted Elizabeth to have the same initials as her grandmother, and we also knew that we wanted her middle name to also be Jeanne.  However, we wanted to find another "E" name, because we also knew that Jason's mom did not like the name "Evelyn."  So, after reviewing a long list of girl names beginning with "E," we chose Elizabeth.  It is a name that I have always loved, it has a place in the lineages of our families, and it would enable our daughter to have the same initials as the beloved grandmother that she would sadly never meet. 

During one hospital visit when I was around 20 weeks pregnant, the doctors ran some blood work and noticed that my blood sugar was abnormally high.  So, they referred me to the Maternal Fetal Medicine (MFM)  Division at Magee Women's Hospital of Pittsburgh.  The MFM doctors had me check and log my blood sugar regularly for a week, especially since most women do not have blood sugar issues that early on in pregnancy.  After reviewing my blood sugar logs, the MFM doctors decided to put me on a low dose of Glyburide and a low-carb diet. I faithfully took my blood sugars, counted carbs each day, bought special snacks to supplement my new eating regime, and checked in with the MFM nurses each week.  I was to continue this routine, and they ordered an ultrasound to be done at 28 weeks to check Elizabeth's size.  They diagnosed me as having early-onset Gestational Diabetes, and this ultrasound was basically routine to determine that her size and growth were on target and not compromised by the Gestational Diabetes.  Two weeks after I started the Glyburide, I started to wake up very sick in the middle of the night.  I was having hypoglycemic episodes that would tank my blood sugar into the upper 50's and lower 60's.  After a handful of these hypoglycemic scares, the MFM doctors decided to pull me from the Glyburide and put me on a regular diet.  After continued monitoring of my blood sugar, it was determined that my Gestational Diabetes had somehow reversed itself.  They decided to still have the ultrasound done at 28 weeks, which would prove to be an incredible blessing in disguise.

My pregnancy progressed along.  I was still having to stop on my way to and from work in Sandy Lake, because I would get sick. I had missed several days of work due to the persistent nausea and inability to hold even basic and benign foods down. Despite all of this, I knew that it would all be worth it in the end when I got to meet that beautiful, little, sweet face. I  began to look forward to the ultrasound that was slowly approaching to get another glimpse at our sweet girl.  They day finally arrived, and I was so excited.  I went to the appointment, was called back by the ultrasound tech and sat up on the table.  Shortly after, the tech began the test.  She scanned the wand across my belly, and I could see glimpses of Elizabeth.  We watched her heart beat, which is always my favorite part of an ultrasound.  We saw her feet, hands, toes, fingers, and her face.  I could tell that Elizabeth was going to look just like her brother.  They had they same chin, a loving curse from their Dad and I.  I felt that everything was going smoothly.  The tech confirmed again that Elizabeth was in fact a girl.  Then, I noticed the tech repeatedly measuring her head, abdomen and femur length.  I had seen them do this in prior ultrasounds, but this time it seemed different, odd, repetitive.  I asked the tech why she kept measuring those things.  She paused her screen, put the ultrasound wand down, and said she would be just a moment.  She left the room, and I could hear her pick up the phone in the next booth over and call the doctor.  My heart sank.  I could not hear what she was saying, but I knew that it wasn't good. 

I laid on the table, my mind swirling, getting nervous, and whispering to Elizabeth that whatever it was that it would be alright.  In fact, I still find myself saying that to her now. Then, the doctor came in.  The doctor and the tech discussed their findings in a whisper, almost as if I wasn't in the room.  Then, the doctor turned to me.  I could tell by the look on her face that whatever they saw was less than optimal and not expected, but she tried to be calm and explain what she was seeing to me.  My OB/GYN explained that Elizabeth was showing asymmetrical growth among her abdomen, head and femur measurements.  She also explained that she was showing growth restriction or lack of growth from her previous ultrasound at 18 weeks.  I asked some questions, and the doctor tried to answer them.  Then, she stated that she wanted me to see MFM at Magee regarding this recent finding ASAP.  In fact, she got on the phone and called them.  The MFM doctors agreed to see me the next day.  I still feel that this ultrasound was a blessing beyond measure.  If it were not for this ultrasound, we may not have known that she was not growing, and we could have lost her.  Many babies who suffer from IUGR, which we would find out the next day was what was causing the growth restriction, are stillborn and have poor survival rates if not monitored closely.

 The next day, Jason and I traveled to Magee to see the MFM doctors once again. This is when I met Dr. Arun Jeyabalan.  I should mention that during this entire pregnancy with Elizabeth that I remained in close contact with my former college roommate and friend, Meredith Snook, who was finishing up her residency and working with MFM at the time.  She said that Dr. Jeyabalan was amazing, and I trusted her opinion.  It was not until I met her that I realized just how amazing.  Dr. Jeyabalan saw me in MFM that day.  She was very calming, reassuring, knowledgeable, patient, and kind. She answered our questions, did not make us feel rushed, and she explained what was to come next very clearly.  She explained that based on the ultrasound results that Elizabeth had Inter-uterine Growth Restriction or IUGR.  She explained that her measurements were asymmetrical, particularly her abdominal measurements were smaller in comparison to other measurements. She explained the necessity of close and careful monitoring of Elizabeth's condition, which would involve Non-Stress Tests (NSTs) and Biophysical Profiles 2-3 times per week.  Dr. Jeyabalan also explained the importance of monitoring her movements, paying close attention to how I was feeling, and noting anything that just didn't seem right.  She also explained that I was a risk for preterm labor, that many IUGR babies are born prematurely, and in light of this that it was important that I receive shots of steroids to support and kick-start Elizabeth's lung development.  She arranged for us to meet with a Neonataologist to go over what to expect of a preterm birth and the Neonatal Intensive Care Unit (NICU).  We thanked her for her time, expertise, and information.  As we were leaving, our heads spinning and hearts heavy, we booked appointments at MFM for all of the monitoring, picked up my signed FMLA paperwork, and left the hospital. 

 At that point, I was unable to teach a full week.  I was only able to teach 3 days a week initially, and it was quickly reduced to only 2 days per week. Shortly after our first appointment, they increased our monitoring to 3 days per week at Magee.  It was rare that Elizabeth's NSTs or Bio-physical profiles were pleasing to the doctors.  Often times, they would send me up to labor and delivery for continued or prolonged monitoring.  It was made very clear to us when we discovered that Elizabeth had IUGR that it was a fine line whether she was healthier or better off on the inside or on the outside to be grown and monitored via the technology in the NICU. They kept me overnight a few times.  It has really a difficult time.  I was worried about Elizabeth, my unborn blessing, and I was worried about my other blessing who was at home.  During this time, we were blessed with amazing support from family, friends, colleagues, and our community.  It made this difficult time a little easier to bear.

At 29.5 weeks, I went into pre-term labor.  I started having contractions, and the MFM doctors prepared me for delivery while simultaneously trying to stop the contractions.  They hooked me up to IVs with medications that were to protect Elizabeth's brain and premature body if they couldn't get the labor stopped, and they also gave me medication to try to get the labor to stop.  My sister, Holly, stood by my side at my bed, held my hand, and I felt more scared for her having to be there for her big sister in such a crisis than I did for myself.  Jason was a work, and Holly was with me that day for my appointment. I look back, and I am glad that her calm spirit was with me that day.  My pastor came down to Magee, Pastor Joe Boomhower, to see me and to help with prayer.  If you don't know Pastor Joe, he is a wonderful man.  He came to visit me after our miscarriage.  He has totally changed my opinion for the better about religion, and I cannot thank him for all that he has done for Elizabeth and our family through this whole experience.  He said a prayer over Elizabeth and I, and he promised to bless her and baptize her if the worst should happen. That alone made me feel better.  In nothing short of an example of the miracle of prayer, my contractions ceased within several hours and my labor stopped.  Elizabeth was safe for now, and the doctor's agreed that my days of traveling back and forth to the hospital were over.  They decided to admit me until I delivered her, which we all hoped would be after 36 weeks. 

 Magee Women's Hospital became my home away from home for the next few weeks.  The doctors, nurses and staff were wonderful.  They were no substitute, though, for being at home.  I missed Celtan. They monitored Elizabeth nearly continuously with monitors and would take me down for ultrasounds nearly every day.  I loved taking Celtan to see the fish and turtle pond when he would come to visit. Then, one day when I was around 33 weeks, I started to feel the contractions.  They felt different than before.  The nurses said that they were not picking up the contractions on my monitor.  I could feel them increasing in their intensity and frequency.  So, on May 10th, 2013, I moved my monitors further down on my belly where I could feel the contractions.  In what seemed like no time at all, I had doctors and nurses in the room.  They said that I would be delivering Elizabeth today, because I was having contractions and her heart rate was decelerating with the contractions. It was a Friday, my nephew Mason's 2nd Birthday, and my sister Becca's Senior Prom.  I called Jason, my family and they sent me down to labor and delivery.

Jason and our families showed up.  I was nervous about the outcome of Elizabeth's birth, but I was excited to meet her. My roommate from college, Mere, was with me in delivery.  She was monitoring my progress, doing what she could to keep me comfortable, calm and to ensure Elizabeth's safety.  Mere is one of the brightest, most beautiful, sweetest and endearing people that I have ever met in my lifetime.  I was honored to have her deliver Elizabeth, glad that she was beside me and involved with both of my pregnancies, and I cannot thank her enough. After several hours of non-productive labor, and considering that my water broke a few hours earlier, they decided to do an emergency C-section. Elizabeth was not tolerating labor well, her heart rate decelerating with contractions, and it was time for her to come.  They prepped Jason and I for the OR and called Mere to come back to the hospital. I had requested that she perform my C-section, and she did so calmly, professionally, and with what seemed like great ease.

As I was lying on the table in the OR, I was surrounded by wonderful nurses, doctors, and they were all amazing.  After what seemed like an eternity, I heard Mere say that she was out.  Elizabeth had been born.  I could not hear Elizabeth crying, and my terror exponentially increased.  Mere told Jason and I that she was not breathing, and that they were going to intubate her to get her lungs working.  The doctors quickly inserted a breathing tube, gave her a medication through her tube called "surfactant," and soon our daughter was breathing with the help of a ventilator.  They cleaned her off, got her hooked up to monitors, and IVs.  They had grossly underestimated her weight in an ultrasound prior to birth, and her weight at birth was 3 lbs 10 oz.  The wheeled her over in her incubator bed to Jason and I, and we got to look at Elizabeth's precious face around 11:50 p.m on May 10th.  I remember looking at the clock while I lay on the operating table and crying as they wheeled her away.  It was hard to see her hooked up to so many things, to see her body so full of fluid from her respiratory distress, and above all to not be able to hold her against my skin and kiss her. I felt bad, because I felt that Jason was cheated, too.  We knew that she would likely go straight to the NICU.  We knew that she would likely be in an incubator, hooked up to various machines, but no amount of educating a parent on these situations prepares them for actually seeing it happen to their newborn child.

 Elizabeth went straight to the NICU at Magee.  Jason and I were able to peek at her quickly through the incubator bed, and we were prohibited from the first, anticipated, and expected moment of holding our newborn baby girl.  They wheeled me down to see her after I was all done in the OR.  Jason, myself, and our parents were allowed to peek in on Elizabeth.  I knew that she was a fighter.  She seemed so small, helpless, but she had a presence about her in that incubator bed.  I went down to the NICU early the next morning, and I sat by her bed.  I wasn't allowed to hold her, because she was still on the ventilator, but I touched her hand and sang to her.  She was so small and beautiful.  She had a whole head of black hair, little eyes, the family chin, and her skin was translucent, pale and beautiful. She would occasionally open her eyes, and I swear that she smiled a few times. On Sunday morning, two days after her birth, she pulled out her own breathing tube and went straight to oxygen through a tube in her nose.  She was breathing just fine.  Her pulse oxygen was good, and the nurse gave me the best  Mother's Day present ever:  I was able to hold Elizabeth for the first time after two whole days of watching her through a bed and longing to hold my newborn baby. 

 That night, I went back to my room.  The nurses were insistent that I got some rest, even though I wanted to stay by her side all night.  I got a call that evening from the NICU, and they said that they were having trouble getting an IV into her. She was on IV fluids for nourishment and antibiotics to prevent infection, so the IV lines were important.  Their solution was to put a catheter into her umbilical artery.  This would eliminate the need for and risk of using veins for the IV fluids and medications, but it would prevent me from holding her again until they no longer needed the umbilical catheter.  We obviously wanted them to do what was best for her health and safety, but it was heartbreaking to only be able to touch her through her incubator bed.  This made my Mother's Day gift of holding her in my arms all the more special and cherished.

 The NICU staff said that the umbilical catheter would be in place for 7-10 days, and so my countdown began until we could hold her in our arms again.  Even more distressing than not being able to hold her was the fact that in two short days I would have to leave the hospital and leave my baby girl behind.  While I knew that I could not take her home, I still believe that there is nothing less tragic for new parents, especially a new mother, to have to leave the hospital without their child.  So, I was in the NICU every day for as long as I could be there.  Except to eat or sleep, I maintained a vigil beside her incubator, whispering prayers, singing lullabies, and talking to my sweet, small girl who had dropped to 3 lbs 3 oz. I listened to monitors beep, the systematic drip of the IVs, and watched the nurses push breastmilk into the feeding tube carrying life sustaining nourishment into her belly. 

The morning before I was going to be discharged from the hospital, I walked down to the NICU.  As I was rounding the corner of her Pod, I noticed a startling, and familiar, soft blue glow coming from her room.  I knew immediately that she was undergoing phototherapy for jaundice.  As I entered the room, her nurse was there charting her vitals and changing an antibiotic.  She said that her bilirubin had spiked, and that she had jaundice, and that this was normal for preemies.  They would keep her under the lights until her bilirubin levels were normal.  I was startled by the lights, but I also mentioned that they were familiar.  Our son, Celtan, was in the NICU for 5 days.  His bilirubin levels were high enough for a blood transfusion, which we were able to avoid due to the quick action and even quicker thinking of his pediatrician.  He seems to have no lasting effects from his scary bout with jaundice, but it was still quite terrifying at the time when he was 2 days old.

 I had forged some relationships with the staff at Magee during my extended stay there. I kept them informed on the Boston Marathon Bombings, and they took excellent care of me.  The night before my discharge, I cried and sobbed about the inhumanity of having to leave the hospital and having to leave Elizabeth behind.  Many of them cried with me. Mere and Dr. Jeyabalan visited me, sat on my bed and listened emphatically as I expressed my disgust and distress of being discharged in just a few short hours.  My mom came to pick me up, because Jason was working, and we went down to see Elizabeth.  I touched her and kissed her hand.  I was still unable to hold her since she still had the catheter in and was under the phototherapy lights.  Eventually, it was time to go.  I cried the whole way home, despite my mom trying to reassure me that she was in good hands.  I knew that she was in good hands.  I knew that I could not bring her home.  I missed Celtan.  No matter what anyone said, I knew that I had to leave, but it wasn't the same and wouldn't be the same until I was able to bring her home with us.  I was glad to be home, and I was glad to have such a loving and dedicated family.  They agreed to get me to the hospital every day until I could drive myself to go down and see her.  I did just that. 

 Jason came down on his days off to the NICU with me.  Some days we would take Celtan, and other days we left him with a babysitter or family member.  The generosity of our friends and family during this time was overwhelming.  I went down to Magee every day.  I held Elizabeth.  I sang to her.  I fed her.  I bathed her.  I put adorable clothes on her.  I brought her gifts from Celtan, such as giant dinosaurs that looked in on her from the top of her incubator.  I stayed informed about her improvements and set backs.  When other people would come to visit, I would encourage them to do these things. 

 One day, they transferred her to a "feeding and growing" pod in the NICU.  In these pods, they do just that: they feed and they grow babies. Elizabeth's biggest set back was her lack of breathe-suck-swallow coordination.  She had a feeding tube through her nose.  It was put in and out intermittently.  Sometimes she would feed and gain weight quite well, but other times she would not.  At this point, she was being weaned from the incubator, she had stopped having bradycardia episodes (low heart rate), she was no longer on oxygen, and she was gaining weight.  She was also no longer undergoing phototherapy for jaundice and was not receiving IV Fluids.  We could hold her as much as we wanted, and it was a glorious feeling. We knew that to get her home she needed to eat all of her feeds without the feeding tube, gain weight and maintain body temp for 48 hours. So, we worked hard towards helping her reach those goals.

 This entire time, the doctors all said that she was making progress.  They only explanation that they could gather for her in-utero issues and preterm birth were that they were due to a small placenta and placental abruptions.  They were hopeful about her prognosis.  They felt that in time she would catch up with her peers and be just fine.  They praised the efforts of our family for being so involved in her care and well being.  The only really alarming and mysterious finding in the NICU was that she had one ventricle in her brain that was slightly larger than the other. However, the doctors reassured us that this was an insignificant finding, and that they were explaining that it was likely measurement error.

 The day finally came that we were allowed to take our sweet Elizabeth home, so that we could begin our lives as a family of four under one roof.  Its actually quite funny story about that day. It was a Sunday morning.  Jason was working, and my mom agreed to take me down to the hospital to pick up Elizabeth after church. I decided not to go to church, because I had way too many things to do at home to get ready for the homecoming of our Princess.  I mean, it is super important to dust, run the vacuum, and to make sure that all of her preemie-sized clothes are folded into neat, color coded piles before she gets home. So, I busied around my house while Celtan played with his toys.  He kept asking when his sister, Lizardbutt, would be coming home.  I kept joyfully reminding him that it would be today.  He melted my heart by his excitement. (Oh, and yes, he did call her "Lizardbutt."  He was almost 3, and that was his way of saying "Elizabeth."  The name sort of stuck in our family, because we thought it was funny.  I told the NICU nurses about it, and they thought it was funny.  In fact, some of her nurses and some family members, affectionately called her "Lizardbutt." So, if you hear the phrase "TEAM LIZARD,"  they are referring to being on Elizabeth Jeanne's "team.") Anyway, after I felt that I had the house spotless and organized enough, I went upstairs to shower and change my clothes.  I was in my room getting ready, and the door to our bedroom shut behind me.  I didn't think anything of it, and a few seconds later my panic set in as I realized that the door locked and I couldn't get out of my room.   I had taken the door knob off of the door months prior, and had never replaced it.  The door was stuck, and despite my kicking and pounding on it, it would not open.  After breaking a sweat and being nearly in tears, I realized that I had my cell phone in my room with me.  I called my dad, and he came up and got the door open.  I left shortly after to head to the NICU with my mom to pick up my sweet girl. 

When we arrived at the NICU, the nurses gave us our discharge instructions.  We went over a list of things to watch for, follow up appointments, dos and don'ts, and they let me ask questions.  My biggest concern was taking this sweet 4.5 pound baby girl home with her 44 pound, almost 3 year old, big brother.  Their sizes didn't match up, and although I knew that he would be gentle with her, he is an energetic boy.  It turned out to be an irrational fear, as they have done well together.  My mom and I packed up Elizabeth's things.  I hugged the NICU nurses and thanked them for their compassionate, precise and diligent care that they gave to my daughter.  We shed some tears, as I was leaving a group of people who had been a huge and important part of my life for the past 6 weeks.  Then, one of the nurses helped us push our cart full of items down to the front of the hospital.  We loaded up the car, put tiny Elizabeth in her car seat, and we went home.  It was hands down one of the best days of my life.  I was finally getting to leave the hospital with my daughter.  The nearly 6 longest weeks of my life were finally over, and we were going to be a family of four under one roof.