On the 19th January 2012 a beautiful little boy was
born into the world. Jake William, born at 1.39pm on Thursday the 19th
January weighing in at 9lb 7oz via Caesarean section. I dont
know how I knew something was not right, but I just did. He came out silent,
struggling to breathe and quickly turning blue. I knew instantly when I
saw him being carried over to the table that he needed to be on his front not
his back. They couldn't get his breathing stable and he was
still blue. My poor little boy was suffocating, I couldn't talk
due to the drugs but inside I was screaming at them to turn him over onto his
front. They whisked him away to the neonatal unit where he was put on a
ventilator. I didn't get to hold my little man for 3 days, it was the
worst three days of my life.
The issue he has is a condition called Pierre Robins
Sequence, it is a condition present at
birth, in which the infant has a smaller-than-normal lower jaw, a tongue that
falls back in the throat, and difficulty breathing. There is no
known cause of Pierre Robin Sequence, it may be part of many genetic
syndromes. The lower jaw develops slowly before birth, but speeds up
during the first year of life. Symptoms of Pierre Robins may be ,cleft of
the hard and soft palate, high-arched palate, jaw that is very small with
small (receding) chin, jaw that is far back in the throat, repeated
ear infections, small opening in the roof of the mouth, which causes
choking, teeth that appear when the baby is born, tongue
that is large compared to the jaw. Jake has the cleft palate, most of the
soft and some of the hard and the small jaw. He currently has in a "Snorkel" NPT which is a Nasopharingeal Tube with a humidifier on the end to help with his breathing. The NPT is inserted via the nose, passing along the back of the throat, just past the base of the tongue bypassing the level of obstruction. For him to come home he has to have a Modified Nasopharyngeal Tube. Which is just the Snorkel tube split so that it is flush with his nose. We are waiting on this tube change. His treatment is just to wait until he has grown a bit before they will sew up his palate. With time his jaw will grow to a more normal size, therefore pulling his tongue forward and removing the threat of obstruction. Management of the tube is suctioning, a catheter is inserted down the tube and all the secretions sucked out...listen to me I sound like a medical person LOL.
It is a very frustrating process, he has been in the Hospital since he was born. I catch up with the doctors and they say the same thing "keep doing what we are doing". At one point we were coming home but then he caught a cold which he has not been able to shake very well. So that pushed our discharge date back, they wont even give us a date now and I am not allowed to mention the "H" word. Home!
One day he will be home and safe, I get the feeling that it is not that far off as he looks great and he has grown so much in the last few weeks. He is smiling and starting to laugh and trying to roll over. The snorkel doesn't help with the rolling over as it sticks out about 10cm from his face. I love watching him interact, Ella thinks of him as something from space I am sure of it. She is very gentle with him which for her is amazing as she is as rough as guts!
Lisa
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