In the morning the nurse came in to take Savannah's vitals and noticed that she was breathing faster than normal. She took Savannah to the nursery and called the pediatrician to perform an exam. The pediatrician came back into our room after her exam and told us the news. It was the hardest thing I had ever heard... our baby was born with a birth defect. She told us Savannah was born with a bilateral cleft palate, small chin and a tongue tie. She had been transferred to the NICU for monitoring and further evaluation.
A few hours later we met with the NICU neonatologist. It was the first time we had heard of Pierre Robin Sequence and the possibility that what was affecting Savannah. It was hard to see our baby girl hooked up to all the monitors in the NICU even though I knew it was for the best. She had an IV in place and had already had multiple tests done. We are still waiting for the test results of the chromosomal (genetic) testing but the ultrasounds of the head, heart and kidneys came back negative which was a relief.
What is Pierre Robin Sequence? It is not a disease or Syndrome in itself. It is the name given when a group of birth defects are found together. Those defects are small chin (micrognathia), cleft palate, and tongue tie (glossoptosis). They can cause breathing and feeding difficulties. Doctors do not know exactly what causes PRS. It is likely a result of fetal positioning in the early weeks of the pregnancy. Genetic testing can often determine if PRS is linked to another disease or syndrome or if PRS is simply a birth defect. PRS is a suprisingly common birth defect in the United States affecting approximately 1 in 8500 births. Affected children will need surgical cleft palate repair and may possibly need jaw surgery called jaw distraction.
Due to the cleft palate we learned that breast feeding would be an impossibility. It was stated that if Savannah had any feeding problems that they would need to tube feed her. I was determined that this would not happen and started pumping breast milk in an attempt to try and bottle feed her. The NICU therapist was able to provide us with special bottles and nipples that we would need to use. On October 4th I had created enough milk to try to bottle feed our girl. She took to it right away. I was so happy! I was finally able to feed my little girl! We were able to meet the restrictions put on bottle feeding and avoided tube feeding. (With a cleft palate baby you have to feed a certain amount of milk in a half hour or less, any longer and the baby will burn more calories trying to eat that what they are consuming.)
On October 5th I was discharged from the hospital even though Savannah was still in the NICU. It was hard to think of leaving the hospital and leaving Savannah there alone. It was even more daunting knowing that I could barely produce enough milk before each feeding. This meant that we would be driving back every 3-4 hours all day and night to drop off milk for feedings just to keep up with Savannah. Thankfully, the hospital offered us one of their empty rooms to stay in (with the understanding that we may be kicked out any time if they get full). It was a shared room and I am sure the couple next to us was thrilled to hear me pumping every two hours but you got to do what you got to do!
The next day we decided we could not do the shared room for another night. So we packed up the car and we were trying to decide what we were going to do while we went to feed and spend time with Savannah. That is when the nurse and the physicians assistant came to talk to us. They asked us if we thought we were ready to take Savannah home. They told us that they would like to place us in a special "parent living unit" overnight that was located right next to the NICU. They would leave us in the unit overnight with Savannah and see how we felt in the morning. We would be left alone but the NICU nurses were available with just a phone call.
It was a busy night with lots of pumping, feeding, comforting Savannah and absolutely no sleeping but after it all we were convinced that we could take care of Savannah on our own. The nurse came in and we spoke for a while and we were told that Savannah would be discharged that day! It was such a relief not only was our baby coming home, but because we never had to leave Savannah alone in the hospital the entire time she was in the NICU.
During Savannah's entire stay she never had any breathing or feeding problems. She never had to be tube fed or intubated. So far we consider ourselves extremely fortunate. Many cases of PRS are much worse requiring months of hospitalization in NICU. We have been referred to the cleft palate clinic for follow ups and are waiting for our appointment with Savannah's surgeon in two weeks. Most likely her 1st surgery will be around 9-12 months when they will attempt to fix her palate and place ear tubes to prevent all too common infections for PRS children. It is not known at this time if she will need jaw distraction surgery. We are also still waiting for Savannah's genetic test results to come back and we will also be meeting with her geneticist for follow up in a few months. It's going to be a long road that has just begun. It's going to be tough but we are here for the long haul because we love our little girl!
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