How Do You Like Me Now?

E during her stay at Loma Linda.

 I held out no hope of this.. DiGeorge? condition thingy that they were testing her for.  I had taken my baby to so many doctors and specialists and she had been tested for so many conditions, that I had no feelings of anticipation on her test coming back.  I just wanted them to help me keep her alive and start gaining weight.  She was just so small and so miserable and I wanted her to have relief.  If a diagnosis assisted in that relief, then that would be nice, but I was not about to become obsessed every time a new possibility came our way anymore.  They hooked her up to intravenous fluids and antibiotics.  Occupational therapy would come to her bed and watch my efforts to feed her and it would go something like this:
  E is in her high chair.
  Mommy offers her a spoon of eggs or mashed potatoes.
  E takes a bite.
  E then looks Mommy straight in the eye without swallowing, opens her mouth full of food, and pulls the entire mouthful out with her tiny fingers like a rake.  She throws the food to the floor and smiles innocently.
  Mommy cries because she is full of pregnancy hormones and frustration.
  Occupational therapist sits shaking their head and pats sad Mommy on the back and notates in E's record.
  They have Mommy try with a new food or give up and leave to return with something different at the next meal.

  I felt defeated and when her doctor would make rounds each morning and go over whatever was going on we would go over possibilities.  Shortly after E received the NG tube for feedings, she began to spike a fever and vomit indicating that her body was not going to cooperate with the tube and it was removed.  With E's worsening failure-to-thrive and refusal to eat, the doctor finally approached me with the fact that E needed a feeding tube surgically placed in her stomach.  It scared me, but it would be something to get nutrition into her so I signed the paperwork and her surgery was scheduled for the next day.  I was just past 38 weeks and my scheduled c-section was set for only days away.  I made a call to my OB and tried to see about adjusting my c-section to be with E.
  "Hello?"
  "I was wondering if I could reschedule my c-section, my daughter is in the hospital and has surgery two days before I am scheduled."  This sounded legit to me.
  "Ma'am, we don't just reschedule c-sections.  You and your unborn baby are just as important as your daughter.  You need to come get registered for the surgery by the 4th for your surgery on the 6th."
  "My daughter's surgery is the 4th and I am 2 hours away.  Do you expect me to leave her to come register while she is in surgery?"
  "Yes Ma'am, I do expect that.  You are having a c-section for safety reasons and I can't risk yours or your baby's health.  I am sorry."
  Dejected, I hung up the phone and called D to tell him he had to drive to Loma Linda.  One of us HAD to be there with her tomorrow and I could not put off my own surgery.  When I called D, he reminded me that he would be in the area tomorrow anyway because his parents were flying into the L.A. airport.  He would meet up with them and head straight to the hospital and stay with her so I could go register for my baby to be delivered.  Knowing E would have her dad and grandparents gave me comfort when I knew I would have to leave, but I still hated it completely.  As I sat loving on E, a team from plastic surgery showed up and asked to look in her mouth.  I let them, but they barely tried to flash a light in her mouth before giving up and leaving without accomplishing anything.  They were looking for a cleft palate and didn't try hard AT ALL so they didn't see anything.  I was confused, but figured they were just ruling things out.  Just as they wandered off, a cardiology specialist showed up with a portable echo-cardiograph machine and ran a full test on her heart.  He mentioned something offhanded about "ruling out the FULL condition" and I couldn't understand what he was talking about.  He deemed her heart to be in perfect condition and left me very confused.
  Everything became crystal clear the next morning during rounds.  Usually one or two doctors would wander by and we would have a chat and I would go about taking E to the play area, attempting to feed her, or helping her sleep.  Today was a very different start.  A team of 10-15 doctors walked in with a look in their eyes of anticipation.  Shocked by the shear volume of people filing into her room, I hoisted my full-term pregnant self to sitting from laying down with E.  Once I was ready, the lead doctor began to speak:
  "We got back E's genetic testing.  Dr. V was right in her suspicion after seeing a chest x-ray taken when E was 7 days old and seeing a missing Thymus shadow by her heart.  E has a genetic disorder called Velo-Cardio-Facial Syndrome and partial DiGeorge Syndrome.  She has a very mild form of it that made it so hard to diagnose, but her FISH test came back showing she does, in fact, have a missing piece in her 22nd chromosome causing all her health issues."
  Words escaped me as tears ran down my face.  The doctors misunderstood my tears for being upset and tried to comfort me, "She is very lucky!  Over 75% of babies born with DiGeorge are born with life-threatening heart failure and deformation.  E is among only 25% of babies spared that part of this condition.  We even ran the heart test yesterday to make sure."
  Once I realized that I had them thinking they had scared or upset me, I found my words,  "I am so relieved you found out what is wrong!  I have been told I was a bad mother, a neglectful mother, accused of starving my child for attention, treated like I was crazy, and all while pouring every single ounce of my love, time, fight, and resources into keeping her alive and well.  You have validated me, not scared me.  No matter what she has, we have been in this battle for 16 months and now I can sleep peacefully knowing I did nothing wrong to hurt her.  Thank you."
  Shocked silence followed my words as the reality of how I was treated sunk into all of them.  Even some of the doctors standing in that room for the news to be delivered had tried to make snide comments and give me the same answer-less "sometime babies just don't want to eat" only 24 hours earlier.  To that I replied that no one wants to eat if every time they eat, they suffer horrible pain immediately or minutes later.  No baby is born just thinking, "Gee, I am gonna starve myself just because I want to be difficult."  My baby learned to fear food and eating.  Agonizing constipation from days old, painful GERD, acid reflux that shot from her nose and stopped her from breathing, colic... no, doctor, babies don't just starve themselves.
  I gathered myself back together and went forward with the conversation.  "What happens now?"
  "We will definitely move forward with her PEG G-tube surgery this afternoon and send a laundry list of necessary tests for Dr. V to start ordering for her as soon as she is released and can go home."
  "About that... I have to leave as soon as her dad gets here to get registered for my c-section on the 6th.  How soon can E come home?  I can't have this baby alone if it is at all possible to let her go home and be watched closely by Dr. V."
  "We will see how she does after surgery and hopefully let her go home tonight so you can all be together for your newborn's birth."  She smiled kindly and then added, "The geneticist will be coming to see her any time today to go over her condition with you and get things set up for her to be seen in the genetics clinic.  Also, there are about five other specialist that will be contacting you to set up seeing E."  With that, she and her massive team saw themselves out and I made a call to D and my mom to tell them the news.  E was DIAGNOSED!  My mom was so eager for answers that as I spoke the name of the condition, she googled it and as soon as the pictures loaded, the told me on the other end of the line that they HAD to be right because these other children looked EXACTLY like E!  The waves of relief were beautiful to me and I just held E's tiny body as my unborn baby swished and adjusted to her weight against my abdomen.  The three of us just indulged in that precious moment.
  When E took a nap shortly after some time playing, I asked the nurses to keep an eye on her and excused myself.  I looked for the chapel and quietly entered the empty worship area.  I went to a pew and slowly lowered myself to my knees and I let myself cry unchecked.  I cried for a long time and spoke to God.  I told him of my gratitude that he had spared her of the heart defect, that she was finally diagnosed, and how heartbroken I was that this was going to be part of her whole life.  That this might affect her future children.  Then I prayed for her doctors and for her for her imminent surgery.  I was so scared.  I finished up asking for the courage and strength to get through my baby's birth the next day and for his safety and health.  This was all happening in a pileup and if He was with me, I would get through it and I knew that.  I waddled out of the chapel with swollen eyes and a weight lifted off of my existence to take my two other little girls with me to register for my c-section and E went into her first surgery.