Doctors Appointment of Doom

July, 2008
Five days after Sarah was born, I took her to her first pediatrician's appointment. The pediatrician that was assigned to me at the hospital was not available to meet within the time frame expected by the hospital. So when I called the pediatrician's office the receptionist said there was another doctor available and proceeded to list many appointment times throughout the day. I agreed to meet with that doctor, somewhat curious why he didn't have many patients scheduled and wondered if that meant he wasn't the greatest doctor to be meeting with.

Jon was at work so my friend Kerry came with me to help make sure I didn't drop Sarah or anything. Seriously though, I really didn't know what to expect with maneuvering a diaper bag and car seat and child etc. and Kerry was my support system for that.

We seemed to wait longer than others that arrived after us, but I was trying to fill out paperwork so I didn't think much of it but I was aware. We were called back and the nurse weighed and measured Sarah and we waited for the doctor.

When the doctor entered the room. He was a Sri Lankan man with a very expressive friendly face. He looked over Sarah and then informed me that the state had called and was basically yelling at the receptionist and himself because they had not informed them on the status of Sarah. The doctor was confused because he didn't know whom they were talking about and then realized that we were sitting in the waiting room while he was on the phone. Sarah's newborn screening blood test had flagged her as possibly having one of two genetic deficiencies, carnitine palmitoyltransferase (CPT) II deficiency or carnitine-acylcarnitine translocase deficiency. The doctor said that it was such a specialized medical area that he could not explain what those meant but that he would get us in touch with the a metabolic clinic so we could figure out what, if anything, was the matter with Sarah.

Throughout this whole experience the doctor handled it with encouragement and appropriate humor. He reassured me that everything he saw showed that Sarah was thriving and she had gained more weight since leaving the hospital. He said that while all the news he had just given me was a lot to handle, the important thing was that, based on observation, Sarah showed no signs to be worried about and so I should just enjoy my baby until I heard more information.

I had not expected this appointment to take as long as it was, so Kerry's husband had to come pick her up so she could go to school. The doctor allowed me to wait in one of the examination rooms with Sarah as I waited for him to make copies of all the information he had been faxed and as he figured out what our next steps were to follow up on the information provided by the Newborn Screening. I called my in-laws and informed them of what was happening and they came to join me at the doctor's office. I called my dad and had him Google the names of of the two possible disorders and he read me the information he found. I was on the phone looking down at my precious baby as my father described symptoms and informed me that these disorders are extremely rare. It was during this time, I allowed myself to grieve over the news and the possibility of what might come. I was reminded of my prayers during my pregnancy. I had prayed for Sarah and that we might love her and have the strength to handle the child that God gave us. I had given her over to God many times before she was born. I was realizing the depth of what my prayers meant.

Sarah's Birth

July, 2008

Sarah was born four days past her due date. I was induced at about seven in the morning and Sarah was born at 1:44pm after about six pushes. Considering childbirth was one of my ultimate fears in life, I was very pleased with my labor and birthing experience. My husband, Jon, was an incredible coach throughout the experience. Shortly after she was born, we tried to get her to latch on to breastfeed and she did. I was relieved because I had heard horror stories from moms about breastfeeding.

That night, my husband was unable to stay at the hospital with me because I was sharing a room with another new mom. He left at 10 P.M. During the night the nurses check all the newborns' weight and vital signs. They discovered that Sarah was jaundice and took her to the NICU. That was a sad moment for me to be alone in the hospital as they wheeled my baby off to the NICU. I was left in a room with another mommy and her crying baby. I knew jaundice was common and so I just tried to rest during the times I wasn't in the NICU trying to nurse. The next day the nurse commented to the lactation specialist that it was odd that Sarah was found to be jaundice within 8 hours of birth. They both reacted like it was unusual for a baby to be jaundice that soon.
In the NICU, I felt a lot of pressure to breastfeed Sarah quickly so that she could be put back under the bilirubin lights. As I learned in the breastfeeding class, newborns don't usually want to eat much during the first few days of life, they want to sleep. Sarah did not want to eat during the times the NICU nurses wanted her to eat. When I asked for help, the nurse held Sarah's face onto the boob. Sarah would cry. When she did latch on it seemed like she would choke or gag. I mentioned this to the nurse and she didn't react as though it was an issue. She didn't seem to listen to me. I felt like the daytime nurses acted as though we were a frustration and inept. The nighttime nurses were more relaxed but still wanted Sarah to be feed and under the bilirubin lights as much as possible.

Due to Sarah's unwillingness to breastfeed when they wanted and to encourage my breastmilk to come in more quickly, I was to express my breastmilk using a breastpump. The first time I pumped, barely anything came out. I set what little colostrum I had on the counter to bring with me when I returned to the NICU. I was told by the nurse to bring the milk to the NICU when I returned the next time.

We had family and friends in our hospital room visiting and I was watching the clock anxiously awaiting when I was to return to see Sarah. As soon as the clock clicked to the time when I was to leave, I got out of bed and said I was going to feed Sarah. I realized later that I didn't even say goodbye. I even left without Jon. I was quite the focused mommy.

When Jon arrived to the NICU he reminded me of the breastmilk. I mentioned to the nurse that I forgot the milk I had pumped and she questioned when I had pumped. As soon as she asked the question, I remembered that the milk needed to be refridgerated right after it was pumped. The little bit of colostrum was wasted. I felt frustrated that I didn't remember the refridgeration rules from the breastfeeding class and that the nurse hadn't mentioned it earlier when instructing me on the pumping procedure.

I focused on the task at hand, feeding Sarah. We tried and tried to get her to latch on, she just didn't seem to be eating enough. Finally, the nurse said that they would need to bottle feed her. Sarah didn't want the bottle. The nurse finally said that Sarah seemed to be having a gag reflex. I was once again frustrated. Now the nurse seemed to care that Sarah was gagging. Since Sarah needed to eat the nurse decided to try putting a tube down her throat. As the nurse tried to put the tube down, I couldn't watch. I just listened as Sarah cried. At that point, I could handle no more and I left.

I walked down the hall towards my room, willing myself not to cry. I kept telling myself to just keep it together until I made it back to my room, which was the last room at the end of the hall. As I entered my room I threw away the colostrum that I had forgotten earlier. I turned towards my bed and as I allowed myself to let my emotions go, a nurse, Joanie, entered my room and happily announced she was here to take my vital signs. I turned and said that I didn't think my blood pressure would be very good right now, then burst into tears. I told her about the milk and the tube and the gagging. She got all teary-eyed with me. I proceeded to say that Sarah was so beautiful and showed her the slideshow Jon and I had made of all the pictures we had from the birth and and other pictures. Later, Joanie came back with a plan so I could get some sleep and get my milk taken over as soon as it was expressed. That was the most emotional time for me and Joanie handled it with empathy and respect.

Jonathan came back to the room and informed me that the tube down Sarah's throat didn't work because she was gagging and they had to put the tube down Sarah's nose. Thankfully, Jon was able to stay that night in the hospital with me because my roommate had left earlier that day. Joanie came in throughout the night and woke me to pump my breastmilk. Before we left the hospital, the on-call pediatrician came in to talk about Sarah. She said that Sarah was a normal baby. That her bilirubin levels were in the normal range but that some of the nurses in the NICU were concerned about Sarah's intake and output (they weighed her diapers). The doctor said babies are created to sleep often while the mother's milk is coming in. She directed the nurses in the NICU to treat Sarah like a normal baby to see if she could function as such. It was refreshing to have someone official confirm our thoughts that other than the jaundice, which is very common, that Sarah was acting like a normal baby.

We had to leave the hospital without Sarah but we had it set up that the NICU nurse would call me as soon as Sarah showed signs of hunger so I could feed on demand. Jon slept at our home because he had to go to work the next day. I slept the night at my mom's house because it was closer to the hospital. I got it so that it would take 15 minutes to wake up to the phone call, drive with my mom to the hospital, enter through the ER (because it was afterhours) and get to the NICU. Sarah fed as she was supposed to.

The next morning I arrived at the hospital determined not to leave without Sarah. She met the requirements to leave the NICU. Due to her being jaundice they wanted her to visit the pediatrician in two days, when she was five-days-old. Sadly, Jon was at work, so Jon's parents, Clark and Kathy, and I took Sarah home.

Sarah was able to come home three days after she was born.