Little B's story

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My son Bernard (little B) was born on Aug. 2 2014. We had no idea at time of birth that anything was wrong with him. I had a scheduled C-section for Aug. 24 but he decided to come early. As I was laying on the operating table I heard a faint whimper and then nothing. As Iaid there waiting for what seemed forever my concussion and anxiety started in. Why was my baby not crying? What was wrong? Then then one thing a mother never wants to hear is, " he's not breathing! He's crashing! Bag him. Then I hear them start chest compression. Finally after having to pull his tongue from his throat he started breathing and his heart started beating again.

   After they got me taken care of and taken back to my room, the doctors began to come in and tell me that they don't know what is wrong with my child. They also told me that he may never be a normal child because they don't know how long he went without oxygen. 

  At 2am then next morning I told my husband that we needed to go to the nursery where our son was being watched 24 hours. As we walked in there was another doctor there. He told us that thankful, for some unknown reason the nurse that had been watching him decide to put her finger in his mouth to check for a cleft palate. And when she found he had one, called Dr. Berger. He then at 2am diagnosed him with Pierre Robin.

  Two days later we were sent to a childrens hospital who had a NICU. He was there for less then a week when they were talking about sending him home. I freaked! I wasn't ready to take him home. What if he quit breathing in the middle of the night and I did t hear the machine? I thought baby's weren't suppose to sleep on their tummy because of SIDS? What if he rolled over and swallowed his tongue? So many things ran through my mind. I talked with on e of the nurses about my issues and she talked with the doctor. They then decided to send him to a bigger children's hospital 3 hours away from home.

  Once there they told us that at just 10 days old he would undergo his first surgery!  OMG. He's to small! What if's started going through my head. He had mandibular distractors put in. Then at a fee days over a month old we finally got to go home.

   At 12 weeks old he had to undergo another surgery to have them removed. He did wonderful. We only stayed one night.

   At 10 months old we did yet another surgery to repair his cleft palate and to put tubes in his ears. Up until this point he had been deaf. The doctor manages to get a multi layer closure on his palate and it is expected to grow with him.

In April of 2016 he had yet another surgery but this was a minor one. He had to have his tubes replaced.

As of now, May of 2017 he is doing wonderful and we have not had to have any other surgeries yet.