Last week while waiting at the pharmacy for a prescription (mastitis), the woman in line behind us oohed and ahhed over Soren's cuteness. She asked how old he is and other typical baby stats, and after a few moments she became aware of our location and took a dramatic step back.
She asked in a terrified whisper,
"Is he....is he ill?"
It was strange to see the difference in her body language the moment she realized that the baby she had just been touching (against my will) and admiring might be sick.
"No. He is not ILL, he's just perfect." I replied (glad that she was no longer stroking her fingers across his forehead).
She expressed her relief, "Yes, he does look perfect, and that's good. Sick babies are so sad."
Sick babies.
I heard that phrase easily over 100 times by during the 3 days that followed Soren's birth, and hearing it a month later brought many emotions I didn't even know I had buried right back up to the surface. My face instantly became red hot and my eyes filled with water as the suffocated tears of fear and worry tried to break the surface for air. I forced my lips together to keep my chin from trembling. I inhaled deeply through my nose. I set about digging though the depths my diaper bag in search of elusive distraction. I did everything I could possibly think of to mask my emotions and willed myself not to start crying.
Below are segments of journal entries that I wrote during the first week after Soren was born.
I've debated whether or not to share this on our blog because reading my words is difficult and exhausting and it makes me feel afraid and tired and worried all over again. But I've mostly avoided sharing because I want to celebrate my baby and focus on how amazing and perfect he is and the joy we are experiencing, rather than have people focus on medical procedures or treat my baby like he is "ill".
My baby was one of the "sick babies".
The woman at the pharmacy wasn't entirely correct. Not all "sick babies are so sad". The circumstances of our situation were not ideal, but my sick baby brought me more happiness than I've ever imagined was possible. And so I share my experience with excerpts of what I wrote in a journal during the days after my miracle was born. They aren't necessarily in the same order as how they were written in my journal, because I wrote about our experience out of order, so I tried to piece some of my thoughts in the way that they happened and have filled in between the journaling with some present time narrative to cover any gaps of what happened.
Soren, this is the story of how your heart stole mine.
"A couple of hours after you were born, the hospital nurses took you to the nursery for routine initial check up with the promise that they would come get Daddy when it was time for your first bath. He didn't want to miss it. But an hour (or two?) passed and the nurses didn't come back. Instead, we received a visit from the pediatrician telling us you had quit breathing spontaneously and your body had turned grey (Cyanosis). The nursery staff gave you oxygen and your color came back. Unsure of whether this was a one-time fluke, a transitional problem, or a symptom of a larger problem, Dr. Savage recommended that we split time with the nursery staff during the night and that you only room with us when we are awake. If we were going to sleep, you needed to go to the nursery so there would always be someone keeping an eye on you."
"While Dr. Savage was talking to us, a nurse burst into the room and sent him back to the nursery.
I asked, "is my baby ok?" and the nurse snapped, "your baby had another episode. I don't know." and left. We felt stunned, confused, and terrified and Daddy and I prayed for you for a very long time."
"Dr. Savage kept you on heart monitors under a warmer in the NICU section of the nursery and you stopped breathing 4 more times in the next 24 hours. The nurses would rub your body and give you oxygen and then you would be fine...and then minutes to hours later, you would do it again."
"This sucks. I want to see you so badly right now. I am terrified. I am worried. I am sad and scared and lonely. We've been together for the last 9 months and now I am bound to this bed and you are in the nursery. I have cried to your dad and told every nurse that has come in to check on me that I just want to go hold and feed my baby. I've asked them all to take good care of you and they promise they will."
"I prayed for you and cried for you for 7 hours and they finally let me come see you and nurse you for the first time since right after you were born. Daddy helped me into a wheelchair and took me down to the nursery to see you."
"You latched on right away and nursed like a little champ. You were very hungry and my milk was already in and ready to fatten you up!"
"Dr. Savage hoped that the cyanosis was related to a transitional issue and suggested that all of our contact was to be skin-to-skin. Since you needed to be attached to monitors, all of our time together was spent squished between the washing station and your little warming bed, next to a row of windows. The nurses closed the blinds in that end of nursery and put a fabric shade behind us so we would have some privacy from the people in the lobby who were looking through the windows at all the newborns. (the place was packed!). It was bittersweet to share our special bonding time with a room full of nurses, doctors, beeping machines, about 14 other babies, and other parents and family members of the other babies. I wanted to be alone with you.
I didn't want to share you with anyone."
"Your hand was splinted and taped with an IV. You had 3 heart monitors and a temperature monitor on your chest and abdomen. Your belly button clamp had a security chip attached to it. Your wrist and ankle had hospital identification band on them. Your heels had bandaids from PKU and bilirubin tests, and your toe and foot had an oxygen monitor attached."
"There were so many wires that we set off alarms when we rocked, or if I held you up against my chest or shoulder. It was noisy in the nicu. Machines beeped and doors slammed. Babies cried. The radio blared." I wanted to remind the nursing staff that their voices were the first and only voices that these babies were exposed to in their lives. I was irritated by aggressive conversations about politics, med school, weather, feminism, cheerleading camp, complaints about work and interrupted labor day weekend plans. Don't whine about your job, talk to the babies and make your job better. I worried that Soren wouldn't recognize me and tried to speak only with a calm and soothing voice when I came in, to balance all of the chaos that buzzed nonstop in the nicu. "I wanted to rip out all of the monitors and run away with you where we could snuggle and be alone with no one or nothing attached to either of us (I had an IV, bandages, and bracelets as well) and no sounds but your breathing and my voice."
"Please get better, baby! Doctors worked through the night [two 24 hour shifts back to back with only a 6 hour break for sleep in between] and all through the next day to find a cause for the cyanosis. You poor little baby! You've already had tubes shoved down your nose and throat to check for blockages that might stop breathing. You also had a chest x-ray, an EKG, and two echocardiograms. A brain ultrasound was scheduled, but when the tech arrived, the wasn't equipped with the right size probe to do an effective ultrasound, so it has been postponed for now [and eventually cancelled] since the results from the first echocardiogram came back."
Two congenital heart defects were discovered: (click names for photos)
1) Atrial Septal Defect (ASD)- this is a small hole in the wall between the upper chambers of your heart. This was caused by the foramen ovale staying open (patent) when you were born, leaving a small hole that allows blood mixing between the chambers. If it does not close on it's own over time, it can be repaired with a minor surgical procedure. Your ASD is called a Patent Foramen Ovale (PFO) and it is still possible that it will close within the first 2 years of your life.
2) Patent Ductus Arteriosus (PDA)- this is a hole between your aorta and pulmonary artery that did not close when you were born. This can allow too much blood to circulate to your lungs and heart. PDAs can close within 48 hours after birth.
The cardiologist also noticed that
one of your ventricles was a bit dilated and will need to be monitored with follow up appointments in the future. We currently don't have any more knowledge about that condition, but assume that the lack of critical concern from the doctors means it is only a minor problem.
"The other "sick babies" were always crying, but the nurses said you were perfect. They truly loved taking care of you because they knew what a sweet heart you have."
"There are several parents who come in go SEE their babies, but do not want to touch our hold them. What is wrong with you people? Look how cute she is! She is so tiny and sick. She needs you! Be a mother! Let ME hold your baby if you won't!"
"Parents of the sick babies never visit the nursery for very long. For one set of parents, the nurses had to call them and insist that they come hold their baby. I was in our corner, nursing and loving on you, and savoring every minute, hoping that they wouldn't send me back to my room. I watched from our corner as the parents came, looked at their baby for 2 minutes, and tried to leave again. The nurses tried to explain to these parents what we already know: sick babies are less sick when their mamas are there to hold them, sing to them, encourage them, and love them.
When the parents tried to disagree and go back to their room, the nurses set a timer and made the mama hold her baby. She did not want to and complained about the task. The father stayed in the nursery, but would not touch his baby. As soon as 15 minutes were up, the baby was returned to her bed and the parents left without a word of gratitude to the nurses who were keeping their infant alive."
My heart was breaking. I felt angry. I was jealous of the mothers with healthy babies and mad at them for taking good health for granted.
All of the "sick beds" in the nursery were full. There were 7 or 8 perfectly healthy babies lined up in their little portable beds in the middle of the room, sent there to be cared for by the nurses so the parents could sleep. The nursery was under staffed and the nurses were racing from sick baby to sick baby to keep up with their needs. I got upset every time a nurse had to leave a sick baby to help a healthy one who needs could have been met by parents who were sleeping.
"I wanted to have you in my room. I wanted to hold you all of the time. I knew that you needed to be in the nicu, but I felt like I was missing out every time I had to leave. I wanted to be the one who woke up to your cries, to comfort you, to change your first few diapers, to give you your first pacifier, to swaddle you, to rock you to sleep."
"Soren, I want you to know that I LOVED coming to see you in the nursery. I begged the nurses to let me in, and once I was there, I always stayed until they made me leave. Sometimes, I managed to stay for over 1 1/2 hours. I would feed you and have your feeding time documented then when you were finished, I would lay low in our corner and out of the way and just hold you as long as I could. When I was sent back to my room, I would come back an hour later to feed you again."
"Our time together in the nursery was interrupted and shared with a room full of people, but it was still very special. The nurses handed you me and I talked to you and sang to you and I didn't care who could hear us. I held you and rocked you in my wheelchair. After you ate, I let you sleep in my arms or across my chest. I rubbed your back. I traced your hairline with my lips and kiss the top of your head. I nibbled on your tiny ears and held your tiny hand as I prayed for your heart to get better."
Our home teacher came to help Daddy give you a Priesthood blessing in the morning after your first night in the nursery. I am so grateful to live in a country where we are free to practice our religion. I felt the presence of the Spirit with us as they placed their hands on your tiny head and anointed and blessed you.
"Soren, I have never been so afraid in my life. I have always thought I had rock solid faith, but feeling completely out of control of the situation and not knowing if you were going to be ok really rocked my socks. I was sick with anxiety over your well being. Aaron was calm and cool as a cucumber and I relied on his faith and sure knowledge that you would be just fine.
I learned not to doubt Heavenly Father's plan when I realized there was absolutely nothing I could do to make you better except for pray. Prayer is a very real thing. I learned to truly give up desire to control the situation and completely submitted my will to God's. Pray is all I could do, so that is what I did."
"I also received a Priesthood blessing that morning. I felt calm and rational. My anxiety hit a plateau and settled to a level that was manageable. I was finally able to sleep and could even handle being alone for small lengths of time. I know this would not have been possible if we had not called upon greater power for help."
Later that day, the results of the second echocardiogram revealed that one of the holes had already closed. I know that this experience was an opportunity for us to exercise our faith.
"The following night, the nice was so crowded with nicu cases that out of protection of the infants in critical condition, I wasn't allowed to be in the nursery as often as I wanted. When it was time for you to eat, I parked myself outside one of the windows and waited for someone to come let me in."
Aside from the monitors and machines, you didn't look like a "sick baby".
"You are a healthy baby. At 3am, Dr. Savage decided you were healthy enough to come back to room with me in my room. I was so happy I started bawling. I had felt robbed of our first 24 hours together. I couldn't wait to have you in my quiet room, away from loud machines and staff and non-stop pandora radio on the Glee channel. Once we were in our room, I watched you sleep the rest of the night."
"Kasey is staying with me in the hospital that night so Aaron could be at home with the other children and Grandma Lynda, who had arrived earlier today. Last night she had to tell me she would stay awake and watch Soren so that I would go to sleep."
Jocelyn came and her visit helped me relax even more. A lot of my anxiety was gone, but I still worry every day that you will spontaneously stop breathing again. You gave us one more scare at about 5am Sunday morning when you started grunting and flaring your nostrils a lot, accompanied with erratic breathing and patchy colored skin. Another trip to the warmer and monitors. We got you back in our room about 6 hours later. I wondered if this pattern would continue after we got home---if we ever got to go home!
"We were finally discharged late [Sunday] night. We took turns watching you sleep that night and you did great! I pray for greater faith every morning and ask for strength to trust that my worst nightmare will not come true, that you will stay healthy, and that I will be able to take care of you forever. I love you so much, Soren. I love being your mother.'
I've waited forever for you, my sweet baby. You are a miracle in so many ways. I am so glad that you are here. I am so lucky that you are mine. I hold you a lot. I smell your head. I sing to you. I rub your chubby knees and play with your toes. I kiss your fat cheeks. I give your forehead butterfly kisses. I tell you I love you over and over again.
You bring me joy. I hope you are as happy as I am that you are in my arms and that you stay there for a very long time.
"Rest your head close to my heart, never to part baby of mine"
The girls are eager to feed the hens and gather and wash the eggs every day now that they have a physical reminder that hard work brings great rewards. Here they are in the store, flashing their cash around like gangstas. It was super tacky and totally awesome. 
Quincy chose an obnoxious hot pink valentine kitty to stuff and named her Emma.
-Learned how to make homemade cheese and yogurt
-Ran a 10 mile race in San Juan Bautista to support Rotary Club and the End Polio Now Campaign.
-Contacted the humanitarian aid committee at Welfare Square in Salt Lake City about getting a committee together in NWA to raise funds for the Measles Initiative.
A cheese press from local maple.
A lemonade stand (I couldn't find a photo of the finished, painted product. it's really cute.)
The chicken coop
Baby shower decorations for Tia and Britney.
Handmade valentines with the children for their classmates.
Ran my first FULL Marathon! 
-I started composting our food waste. Our veggies will thank me in the spring.
Mothering:
-play in the snow (those of you who know me well know exactly how I feel about the snow.)
Marriage:
One of our favorite dates in 2011 was to see Mama Mia....which ironically destroys and mocks the institution of marriage, but we loved the music and dancing. I'm grateful that Aaron enjoys live theater as much as I do. 2012 is off to a great start and we are having fun planning out our "2 dates a month" for the year. Dates are really important to me, but it isn't the date that has preserved us for 10 years, it is living the gospel, and being present and intentional with our love for one another. 
Be more frugal and green:
Keep in mind that what I only posted wins. Life is not perfect in the Willy House (um, see also: August, Sept, October, and part of November...) 2011 reminded me in a very physical way that Satan is very real and that he is trying to destroy my happiness and eliminate anything that brings me closer to God.