The Beginning of Our Journey

In spite of my age, I would say that my pregnancies have been relatively light and easy for me.  Bouts of nausea were more frequent when I was carrying Janina, but I liked that too because it allowed me to get rid of all the extra weight I had gained during my first pregnancy. 

We were diligent in meeting our doctor’s appointments and in getting all the tests that were needed so we were surprised when Janina came out and the doctors told us that something seemed to be wrong because her head was larger than the usual size and her fingers and toes were fused.  Back in the OR (I delivered via C-Section); those words had not sunk in yet. 

When I returned to my room and reality set in, I was a complete mess.  My OB explained that it that Janina appeared to have Apert's Syndrome, a genetic disease wherein the skull bones were prematurely closed, the midface is retruded, and the fingers and toes are fused.  She was quick to emphasize that it was nothing that we did or did not do and that these occurrences are usually sporadic.  (Unless one of us carried the gene).  Both J and I were at a loss.  Looking back, I can only imagine how distraught he must have been worrying about both the baby and me (not to mention our hospital bill).  Each time a doctor would come to the room, I would immediately break down.  Many times after that, he would just find me crying inconsolably.  

One of my first questions was what Janina’s chances of survival were.  Initially, the doctors could not tell us.  Our little one had been placed in the high-risk level of the NICU, under close monitoring.  It appeared that she had difficulty breathing and that while she did not have a cleft palette, she had a high arch palate.  The fingers on her hands and the toes on her feet were fused although it appeared that the digits were complete.  Those were just the physical indications.  It was too early on to tell what else was wrong.  They could not say if she would have hydrocephalus, a heart problem, eyesight problems, or something else, all we could do was wait and pray. 

I was lucky my Aunt who was a Pedia Cardiologist in NY was visiting at that time.  While she too could not give a definite answer, she was more re-assuring that our baby would weather the next 24hours.  Eventually we (and the doctors) got more facts about the disease and how much it was affecting our baby.  The websites on Apert's Syndrome probably had a sudden increase in hits over the next few days as the doctors, family and friends all wanted to know more information about it.  Janina was kept in the High Risk (level 3) Neonatal ICU for one week with the doctors monitoring her breathing, her vital signs and her feeding. She was the biggest baby in Level 3 and each time J and I would go in to visit her, we could not help but also say a prayer for the smaller and frailer babies with her.  Eventually, she stepped down to level 2 as she increased her feeding.  We had to supplement my breastmilk with formula as her appetite was increasing and probably because of all the stress I was in, could not produce enough milk to feed her exclusively.  Several tests also had to be done among which was a 2D echo which showed that there was an open blood vessel in the heart (Patent Ductus Asteriosus) and small hole in her heart (Atrial Septal Defect).  The doctors and my aunt assured us that these were nothing to be worried about and that we could expect it to heal itself as she grew older.  We were also told then that the life expectancy of children with Apert's Syndrome were normal although numerous surgery would be necessary. 

A week after she had been born, Janina was finally discharged from the hospital.  It was a big celebration for us because it was also J’s 40^th birthday.  On the way home, we passed by the chapel of Padre Pio to pray for little Janina as well as to give thanks for allowing us to bring her home in time for her daddy’s birthday. 

Both J and I consider ourselves lucky to have the continuous and overwhelming support of our family.  In the hospital, they assured us that they were there for us in doing everything that could be done for our baby to live a normal life.  They said that we were most likely the recipients of this special angel because God knew that both J and I had more faith than any of them to overcome this.  (Talk about pressure.)

Except for occasional bouts of jealousy, N has been a wonderful kuya (big brother) to Janina, often smothering her with kisses any chance that he gets.   Janina always gets an automatic good morning kiss from her kuya when we wake up but I will always have to ask for mine.  I asked him one time whom he loved more, Janina or myself – and of course he answered Janina!  I should have known better than to ask. 

We have nothing but pride for our little baby.  As early as now, Janina shows a lot of determination and perseverance in doing what she wants.  And so we know that she has been blessed and that inspite of what others may consider to be a disability, to our little princess, it’s just simply how she is.

"I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well." Psalm 139:14