My Heart Is You

Once getting home it actually hit me that I was a mother of FOUR children from age 4 1/2 down to newborn.  It was overwhelming when you added in that I was nursing Z as much as possible before I started back up on my medication.  E's body was furious about the tube in it and fought with all its might against it being there.  It would try to get infected so she would be placed on antibiotics.  When the infections would be managed, she started growing granuloma scars around the tube.  They had to be literally burned off of her.  It was horrific to even see done and it made me deeply and profoundly regret ever letting it be placed.  On the other side was the fact that we could put her in bed at night, hook up her feeding tube to a machine, and it would slowly feed her body to prevent any further damage from failure-to-thrive.  The tube won every time when you saw her sustain or gain instead of lose weight.

St. Patrick's Day 2009

  Z was a grumpy boy.  He only did happy if he was being loved on and with three other children to take care of, it was an overwhelming time.  Even with the help of the amazing cna's that came to help me survive, I slipped quickly into a deep and dark post-partum depression by the time Z was 6 weeks old.  I was scheduled to see my doctor and E's body was still very angry about her tube and acting infected yet again.  I took Z and E with me to my doctor appointment and once I was seated in his office and he asked me how I was doing, I erupted into sobs until he could convince me to take some breaths and talk to him.  He very quickly told me that it was extremely important to wean Z and go back on my medication literally as fast as I could manage it.  I left there feeling that I had done my very best for Z and now I had to take care of myself. Then the stomach flu from Hades hit me as I was driving to the hospital to have E checked out.
  I would pull over the car and become violently ill, gather back my composure, and get back to driving to have E seen.  Once she was in a room waiting to be seen and her doctor got a good look at me, he started begging me to let him check me into the emergency room so he could give me fluids.  I knew I had to let him help me because I could not drive in my current state and I suffered through getting checked over and helped alongside E.  We all left very late that night and through prayer and my utter determination to not allow harm to come to my babies, we made it home safely that night and I crumpled into bed to try and rest my drained body.
  E went from one doctor taking things seriously for once to a TEAM of literally nine specialists overnight.  Where once upon a time I was fighting a lonesome battle against an invisible enemy, I now had an army backing me up and the enemy had a name and medical information to take it down a notch.  I was empowered and eager to do any and everything possible to take care of E now that I was walking in with a solid diagnosis.  D and I were both tested for the disorder and came back negative so it meant that E was a spontaneous deletion and it was either the egg or the sperm that came into the mix with dna issues.  No one did anything wrong to cause it and no one passed it to her genetically.  The relief was like ice cream on a 120 temp day in the middle of the Sahara Desert.  I was loving the "knowledge is power" that was now my motto.  I thanked God A LOT for what He had done for E.

  Although my marriage had abruptly taken a turn for the worse, things with our daughter were picking up speed like a runaway train.  We became celebrities at the Navy clinic where so much of the initial drama had unfolded because we lived three hours away from every single specialist on her laundry list and they were footing the bill.  They called us in for a conference with every big wig associated with the medical on the base and I showed up with my E and sat down ready for business.  After a few minutes of going over all the diagnostics and details of just what she had, they decided our family needed to be relocated to San Diego where a full-scale Navy hospital full of specialists would be at our disposal.  I thought that would be fantastic and agreed readily.  There was a comfy degree of validation for me as they all sat there taking E so seriously that we were sitting in a conference room discussing her needs.
  When it was time for us to disperse, E and I headed to the door when we ran into the doctor that I had had such a horrible time with.  She walked up to us and said, "So isn't what she has super rare?  Pretty hard to find that don't you think?"  To which I replied, "It is only second in occurrence to down syndrome.  How rare is down syndrome and you could have probably figured that one out right?"  She didn't pursue attempting to justify her treatment of E or myself further and I left with a childish, but gratifying, skip in my step.  Our move happened very quickly and it pushed an already fragile D all the harder into losing his ability to hold himself together.  His new command was not welcoming and he was openly treated with disrespect and humiliation and the tension in him grew.  He would try to hide it, but would explode outward on us when bottling up his issues wouldn't work anymore.
  While dark clouds circled over one part of my life, sunlight would shine through with E.  E's PEG tube was replaced with a much more comfortable Mickey Button tube for surgery number 2.  E was able to go to an ENT who looked in her ears and saw bulging infections that required tubes.  So E went in for surgery three to get her tubes placed and release her ears and sinuses from their misery.  She passed her follow-up hearing test once all the infections could drain.  After testing was run on her swallowing, it was found that E did, in fact, have a submucousal cleft palate and velo-pharengeal incompetence.  This meant that her soft palate behind the bone palate in the roof of her mouth was not fused together like it is supposed to be and the flap that is supposed to shut off airflow and block food and drinks from her nose was not functional and that is why she choked and drained from her nose daily.  E went in for palate surgery for surgery number four.

Leaving the hospital after surgery 6.

  Once we left San Diego and moved to Tennessee and D got good insurance, E was seen by ENT because the infections were unrelenting in draining from her ears and getting bad enough for her to be hospitalized.  ENT wanted to fix her throat flap and try to cut down on infections and decided it was time to remove her tonsils and adenoids and replace her ear tubes.  This was surgery number five.  After some time for her to heal and be in good shape immune system-wise, E went in for a flap to be surgically made in her throat to enable her to finally talk and be able to have freedom from her nose having 25% of what she ate or drank coming from it.  Flap surgery was number six.  For now, that is where she stands on surgeries since her diagnosis.  She is braver than most grown adults I know, including me.

  Today she radiates light and attitude and excitement.  She still requires extensive therapies for speech and occasional other issues, but we can understand her now as well as most strangers when she speaks.  She loves deeply and when she gets extremely happy about something, she can't help but cry from it.  She cries with joy and that isn't something you get to see everyday.  I love her so much.  She is a beam of light that reaches into everyone's heart and takes hold with gentle arms.  She is sassy and finally well enough to throw tantrums, but it is so wonderful to see her strong enough to do so, that I fail to stop them as quickly as I would any of her siblings.  God bestowed an eternal honor upon our family to have her with us.  I am a million times the mother I would have been without her and all she has taught me.  I regret nothing because I fought with all I had to fight with and then borrowed from others when I ran out.  She is a piece of my heart that walks, talks, sings, dances, runs, plays, and loves.  To be honest, my heart is owned by all of my children.  They are my heart...

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.

Dr. V

 I had unrealistically high hopes for the new pediatrician to take one look at E, her medical history, and just be driven to find what was going on.  I wanted her to be psychic.  I would search for E's symptoms online for hours a day, watch "Mystery Diagnosis", or "House" daily desperately hoping that even the briefest of mentions would throw an idea my way.  I was sold on this being genetic, but what on earth it was beyond that was out of my reach of knowledge and I felt like a teeny tiny fish in a massive sea of information I couldn't organize or understand.  I questioned my own sanity.  All the time.  I would look at her and wonder if I was just losing my marbles and creating an illness in my head for some sick reason.  It would hurt to be so tangled up in this mystery that never seemed to have any light shed upon it.
  I took her in to the new pediatrician, Dr. V, and she did the normal first visit routine.  She had her weight and vitals taken, looked her over, had her nurse run vision and hearing tests on her.  She failed the hearing test.  She had us out the door without any fanfare or accusations and homework to get debrox and work on cleaning out any and ALL wax in E's ears before she went to be seen by an audiologist a couple of weeks later.  As I drove home I spoke to God.  "Dear Lord, I can't do this any longer.  I no longer care what is wrong.  She is a precious gift from thee and if all I can ask is that you help me take care of her, keep her alive, and keep her thriving, I will take it gratefully.  Amen."  I made peace with having no control or sway and no one knowing what was wrong and I transferred it to her creator.  He made her, I was gifted with her as my surprise baby, and had already made it through her entire first year, so what did it really matter?  I went about life with a new sense of peace as I tended to my family full of little girls and my baby on the way.
  E's audiology results were not good.  Her hearing was bad enough that they wanted her seen by an ENT and advised Dr. V of this.  To add insult to injury E got sick yet again, but this time it was worse then the usual.  Dr. V put E on amoxicillin and after weighing her began to show signs of concern.  "Don't worry baby E, we will find out what is going on with you."  I sat with tears in my eyes hearing this pediatrician say those words.  A medical professional was not making me out to be some munchausen biproxy or lazy overwhelmed mother that neglected her or mother with too much time to over that was just blowing this way out of the water.  I had a drop of validation rest on the tip of my tongue and it made me go home and immediately call my mom and rejoice over the wonderfulness that was Dr. V.
  E didn't get better at all and she had a follow up appointment after the antibiotics didn't work AT ALL and she had gotten much worse by four days in.  Dr. V was super busy that day and her nurse practitioner saw us and was immediately alarmed by E's condition.  She asked us about E's health history, but asked different questions than anyone else ever had.  She asked us how often E was sick and D and I looked at one another and answered "when isn't she sick is easier to pin down because she has been sick with something at all times since a matter of days old".  She told us to try the new antibiotics she was going to give her, but that E was very clearly in need of Dr. V and that her medical issues were out of her scope of expertise.  She advised us to make an appointment with Loma Linda and see her gastro specialist about her excessive state of failure to thrive to consider a gastro-tube being placed.  She was clearly concerned for E and it was a huge relief to not be alone in that concern.
  The day before E's Loma Linda appointment she had gotten so ill on the second antibiotic attempt that I took her back to see Dr. V yet again.  Dr. V looked her over and sat down to talk to me.  "To be honest she is so sick at this point that were you not headed to a children's hospital tomorrow morning, I would admit her here right now and start i.v. treatment.  But with her going the three hours with you tomorrow to a wonderful children's hospital, I am going to personally call her doctor there and tell her how bad things are looking here. Take her to the hospital here to get bloodwork done so I can look at her immune system.  Then home and watch her for any signs of things getting worse and if she gets through the night okay go to Loma Linda and they will be waiting for her."  I took her to get her blood drawn, then home.  Once she was comfortable and sleeping, D told me it would be smart to pack a hospital bag for us both because she might be admitted at Loma Linda.  I took his advise and he made some calls to get emergency leave in case.
  We drove three hours to Loma Linda and waited for about an hour and a half after our appointment time to actually be seen.  When she finally got called back, we got situated in an exam room and waited another thirty minutes for her doctor to come in.  Once she did come in, she seated herself and we had a talk:
  "I got a call from Dr. V in Ridgecrest about E last night and she thinks she has a condition called DiGeorge Syndrome.  She also told me just how sick E is and that she has not been responding too all efforts made with oral antibiotics.  Mrs. M, exactly how many weeks along in your pregnancy are you because I really cannot send E home in her condition.  I need to admit her."
  "I am 36 weeks and scheduled for a c-section in two weeks from tomorrow."
  "You have other children at home don't you?  Will they be taken care of if E is admitted here?"
  "Yes, two others and their father was approved for emergency leave to stay home with them because Dr. V was talking about admitting her yesterday.  We are good on the other two and I am not due for weeks."
  "Okay, I am going to call over and order E a bed and run the genetic testing for DiGeorge and treat her for her infection and weight issues.  I will have my nurse give you all the information and as soon as a bed opens up they will call your cell."
  I packed E up, the nurse gave us the admitting paperwork for me to sign, and I went to the local Wal-Mart to get food and little things for E and I that we might need before she was admitted.  I was thankful that even if D had been an increasing mess, he had had clarity enough to have me pack the hospital bags for us since we were three hours away from everything we owned and everyone we knew.  I got the call from the hospital about the time I parked and I took E to the floor she was assigned and the nurses lead us to her bed and we settled in.  At 36 weeks pregnant, I was to sleep on a recliner that converted to what was about half the width of a twin sized bed and E wanted to be close in the strange environment so I held her in my arms in the recliner/bed for the next two weeks she was in the hospital getting treatment and awaiting her genetic testing.

Oh Sweet Child Of Mine

When we arrived home from UCLA, our home became a revolving door of RN's, CNA's, and therapists.  Once a week E would be weighed by an RN that would make house calls, Monday through Friday we were blessed to have a CNA that would come to our home and give me relief so I could sleep, exercise, grocery shop, or run errands.  Considering I had been on 24/7 duty with E for the last 8 months of her life, I eagerly welcomed the support and help.  E was given at-home therapies as well to help her with her developmental delays and finally began to make progress.  I was even finally given the "OK" for E to be seen by a civilian pediatrician in town and made an appointment as quickly as possible.
  E kept pulling her NG tube out and after watching her vomit everything she got from it, we stopped placing it and started working on beefing up her formula.  I was given permission to start offering her soft and NOT pureed foods like scrambled eggs.  I would give her anything that she would take and learn from mistakes if it made her sick or regurgitate.  Almost nothing made the cut and her weight continued to be a significant concern.  After another bad weigh in by the visiting RN, I was told that this looked pretty bad and to start keeping a food journal and even taking pictures of feeding efforts "for your protection".  She and I would talk about ways to convince E's body to digest even the tiniest of anything NOT formula and she advised to slowly start adding rice cereal.  I would add a tiny 1/2 teaspoon per bottle until E stopped rejecting it and up it by 1/2 teaspoons until we reached tablespoons.  It took time and patience.
  With E's weight continuing to keep her so small that on a growth chart she had dropped to -10th%, I took her to her doctor to go over the possibilities to help her.  I was visibly pregnant and had her in her car seat sleeping as we sat in the exam room waiting for her doctor.  The one I had chosen was the same one that had hospitalized her as a newborn and got her better so I felt good about going back to him.  He made sure to prove me wrong as quickly as possible.
  He walked in disgruntled with the results from her weigh-in and looked me up and down with disdain.  I broke the silence by saying I was very worried about her weight and that nothing we were doing was making the difference for her.  He refused to even make eye contact with me as I spoke.  After letting me "rant", he asked me:
  "Do you HOLD your baby?"
  Taken aback I answered "yes, I hold her all the time".
  Unhappy with my answer he elaborated "do you hold WHILE you feed her?"
  Again I answered "she is too weak to hold her own bottle so that is the only way I can feed her, is to hold her".
  "What about your husband?  Does he HOLD her enough?"
  "When he is home and I need a break, he does his part."
  He looked me over like I was lying to him, looked at my pregnant belly, and made an assessment of his very own without listening to anything I had been saying to him.  "Well, it is obvious she must not be loved enough to want to live and I will refer her to behavioral pediatrics."
  "Excuse me?  We love our baby and take care of her!"
  He literally walked out the door without so much as looking at E or listening to a word I had said.  I gathered our things and left the exam room in utter shock of what had just been said to me.  When the check out receptionist asked if I wanted to make a follow-up appointment, I told her I would NEVER return to that office again.  I stormed out and put my baby E in my van, got myself in the drivers seat and called D.  I cried on the phone to him and he became enraged in a way I had never seen before.  When I got home, he was there waiting and immediately went to the insurance representative on base and reported the pediatrician.  They told him how bad they felt for what he had done and would investigate his treatment of other families in the future.  I was not accustomed to D being that angry about anything ever.  It worried me, but I just assumed the stress was getting to him too.
  I decided to talk to the Navy clinic about just having them follow E's care as long as her original doctor was NEVER allowed near her and they worked with me.  I took her in to see a new military doctor and she was wonderful.  She did weigh-ins on her for a short time and would send her to different specialists and after a very short amount of time finally pleaded with me to give a civilian pediatrician another chance.  She told me that E's medical needs were just out of her scope of expertise and so I did research and decided on a new pediatrician.  By this point, I had openly asked for a case worker to do a walk-through of my house to protect D and I and they had found not a single thing that we could be doing better.  I was in full defense.
  I had a small encounter with the original doctor during E's last exam when we were leaving and she snidely sauntered up to me.  "So, I guess they didn't anything at UCLA???"  I looked her steely in the eye and said, "not yet, but they sure did find that she was failing to thrive and had to hospitalize her, didn't they?"  She sneered and went back to whatever she was up to and I left that clinic feeling like fire was coursing through my veins.  I felt like I was losing my mind and chasing a ghost the further into this I went with E.  As I drove home with a one year old E that looked like she was a small nine month old, I decided to get her seen by the new pediatrician as soon as possible and made the appointment for her once I got us home.

E on her 1st birthday.

E eating the frosting of her cupcake on her birthday.

Every Step You Take, Gets You That Much Closer

E during a visit to Nevada and very sick as per the norm.

  "She is LOSING WEIGHT and needs something done!  I mean, I bring her in to you every two weeks and she losses weight.  There is something wrong here.  I watch her suffer every day!"  I had my crazy eyes going and the Navy doctor looked completely uninterested.  I wanted my baby admitted into a hospital and tests run and she wasn't interested.
  "She is six months old, have you tried baby food?  She probably just needs baby food for extra calories."  I stared at her in shock.
  "She chokes on liquid formula and you want me to give her solids?!"
  "Just give it a try mom and come back in a couple of weeks to have her weighed."
  With that the conversation ended and I packed up my tiny baby and went home.  I told D what this awful doctor told me to do and although he had the same look of fear in his eyes at the idea as I did, we agreed to let her attempt to eat baby food.  I went to the store and bought some baby food bananas and went home to try this insanity out.  Her vaccinations were so far behind at this point because every single time I would take her in to have them done, she would have a new cold, flu, or horrible inexplicable rash indicating an allergy we couldn't pin down.  She never felt well and we never had a moment's rest.  I feared this baby food experiment but the only way I was going to be taken seriously by this doctor was to do what she prescribed and give her the results.
  I sat E in a high chair and propped her as best I could because she was so far behind in her developmental markers that she had just barely gotten down rolling from front to back and visa versa.  Sitting up was not even a remote possibility for her weak core muscles.  She eagerly took bite after bite of the baby food until we reached the halfway mark on the little container.  Out of nowhere her body rejected it and just like the normal formula rejection, the pureed baby food shot from her stomach into her nose and mouth.  She stopped breathing and turned purple.  I grabbed her from the high chair and immediately began to perform infant Heimlich maneuver until she was able to vomit the rest out and began to breath and cry hysterically.  I sat comforting her and crying from the let down of adrenaline I was feeling in saving her.  I saw my baby aspirate on solid baby food.  Happy now doctor?
  Her following poop came out pure white.  I knew nothing about poop colors, but my common sense told me it was bad.  Really, really bad.  I became enraged.  I gently placed her in her carseat, put her in my van, and drove straight to the Naval medical clinic.  I walked straight up to the corpsman at the desk and demanded the civilian RN.  The look on my face spoke volumes because within seconds I had the nurse talking to me and looking E over.  I described everything that had been happening and told her I had asked her doctor to release her to a pediatrician and that she had refused.  The nurse actually listened and heard me.  She looked at and saw my baby and her condition.  The doctor was called over to speak to the nurse and they exchanged words.  Pretty soon her doctor came running to me and SWORE she would get E in with the UCLA pediatric gastroenterology clinic as fast as possible.  I went home.
  After the marathon that is obtaining referrals from insurance companies, we received the "OK" for E to go to UCLA and the appointment was made.  After a three hour drive to Los Angeles, we went in and saw a specialist that immediately diagnosed her as a failure-to-thrive and told us she needed a lot of tests run that would require admitting her to the hospital.  Unfortunately, they were transitioning from an old building into a brand new fancy one and he couldn't admit her until about two or three weeks later.  He ran blood work that day to look for anything and we drove three hours home to wait for news on when she would be admitted.  The minor validation I was feeling got smacked down pretty quickly when I told people about E's diagnosis of failure-to-thrive because I learned very quickly that the number one cause was parental neglect.  I was warned to expect a cps visit and my worst fears started unfolding in my mind.  The main comfort I had was that I knew that D and I both were doing EVERYTHING we could for her and that is what they would find if they showed up.
  Just before E's hospitalization came through, I got the news that I was pregnant again.  I was worried, but too busy to obsess over it and after how I had acted with E's pregnancy, I chose to be happy about this surprise.  Not anger or negativity was on my mind.  I needed to take care of E right now.  I had been taught by my mother-in-law that a family was only as healthy as it's sickest member and right now, we had a very sick baby.  When E was seven months old I made the drive to UCLA children's hospital and she was admitted into a bed.  One nurse could not stop herself from being rude and nasty to me about how "not sick" she looked to her and how she was taking a bed unnecessarily.  Other nurses would just gush about how insanely beautiful and perfect she was.  It was hard to go through the shift changes and not know what attitude I was going to be faced with next.
  They admitted her on a Friday knowing that the tests would not be run until Monday.  They watched me like a hawk in my every action, inaction, and interaction with my baby.  They recorded my every move for two and a half days straight because just as I was warned, most failure-to-thrive diagnosis are from parental neglect and abuse and they had to rule it out.  I passed their test as a mother and on Monday, the medical tests began.  She was given test after test after test for five days straight and they all came back normal.  They could give me no answers.  At one point, I asked to speak to their geneticist because I had been studying a lot online and her wide range of symptoms appeared genetic in nature.  This awkward and rude man came into her room while she lay sleeping in my arms.  He did not examine her and he asked very few questions before standing up and telling me "I cannot help you" and walking out.  I cried so hard that the nurses had to call in a counselor to talk to me and find resources for us.

E with her NG tube and i.v. going.

E having an EEG run because of her developmental delays.

  At the end of the week and after multiple efforts witnessed by Occupational and Speech therapists of my unsuccessful efforts to feed her, a nasal gastric tube was placed.  It was inserted through her nose and down into her stomach so that she could be fed by a machine.  Medical supplies were ordered to arrive at our home in Ridgecrest in order to continue forcing food into her unwilling body in hopes of increasing her weight.  I was taught how to safely manage her tube and feedings and the early intervention center was contacted by her medical team to start as many therapies and services as they could.  They had no answers for us, but they provided us with what they could while we figured this mess out.  I was devastated and more determined then ever to prove that there was something wrong and took her home dejected.  I just told myself that at least we got all those tests out of the way to take us that much closer to a diagnosis.  It was all I had to cling to...

Please Smile For Me Baby

  I came around slowly.  Somehow it all felt as if a nightmare had unfolded in reality and sleep was a good hiding place.  I knew I had a newborn to take care of and so I made myself come out of my haze.  As D gently placed her in my arms, I tried to adjust my eyes to the little face I was looking into.  She was tiny.  My first baby had been 7 pounds and 15 ounces, my second 8 pounds 4 ounces.  This itty bitty little girl was a tiny 6 pounds and 7 ounces.  I had to use premature baby diapers on her and buy premature baby clothes for her to wear.  Her face looked... weird.  Not ugly, not bad, but not right either.  I told myself that I was just too used to looking at her sisters and needed to adjust to a new face.  Her eyes had no sparkle. She seemed just as disoriented and lost as I felt I was.  I blamed the 11 days before her due date and the c-section.  I knew she was off and that was the most sensible reasoning I could determine for it.

My precious newborn E.

  She couldn't eat.  I was not able to breastfeed her because of my bipolar medication so she was offered a bottle right away and she was not able to latch or eat for any amount of time.  We would have to position the bottle above her mouth and let it slowly drip into her mouth while she halfheartedly would swallow.  Then it was time for her immunizations and the nurses put sugar water on a pacifier and once her tongue made contact with that sugar water, she began to suck.  I was so profoundly relieved because she used that ability on bottles from that time and could at least sort-of suck.  Once she got down sucking on a bottle nipple and would get even the smallest of formula into her body, it would leak from her nose about two or so minutes later.  Her stomach would reject the formula and push it up and instead of going out her mouth, her nose would be assaulted.
  I told the nurses that something was wrong and all I got was "oh mom, sometimes babies spit up through their noses".  This was my third baby in THREE YEARS and I knew something was not right.  But the shear terror of having a sick baby scared me so badly that I just took the nurses words and let it go.  E and I were released from the hospital on my birthday three days after she was born and my family was there to celebrate her with us.  This was my first baby any of them could be a part of as she was born in CA instead of Japan like the first two.  I tried to put on a happy face as we went to Pizza Hut and had a birthday for G and I as G's birthday was only three days away.
  Within a day or two of bringing E home, she had constipation and would scream what felt like endlessly in pain as she tried to go in her diaper.  I took her to a doctor that put her on prune juice and it barely worked enough for us to get her through.  A nasty cold came through our house by the first day we were home and E was not spared.  It started with cold symptoms and while everyone else got better quickly, she appeared to shut down and was not able to eat anything at all.  By the night of the sixth day of her cold, I had nightmares any time I dozed off for an hour that she was going to die and was up checking on her constantly.  She was getting sicker and I stayed up keeping an eye on her.  As soon as the sun rose, I had her dressed and at a pediatrician's office.  As soon as he saw her condition he sent us over to the hospital to have her admitted.
  I sat weeping outside her hospital room while I listened to her scream because they kept trying to get an i.v. into her dehydrated little body.  My OB saw me in the hall and went in to keep an eye on things until it was done.  She came out and informed me that they got one into her leg and if they hadn't they were going to put it in her head.  Thankfully it didn't come to that.  I finally bonded with my newborn baby girl over that three days she was in the hospital.  It was just me and her and I held her for as much of that three days as was physically possible.  I tended to her every need and just loved her.  She was very sick with an infection and a chest x-ray ruled out pneumonia.  It took three full days of intravenous antibiotics before she was able to go home and use oral antibiotics for an additional 7 days.  I convinced her pediatrician that there was something wrong with the spitting up, weak suck, and nose leaking and he ordered a barium swallow study for her once she was discharged.
  The study showed her regurgitating her formula up and even the formula coming out her nose, but he simply labeled her with GERD and referred us to a pediatric gastroenterologist three hours away.  I took her to the very nice doctor at Loma Linda Children's Hospital a three hour drive away and she gave us baby antacids and we went home to try them.  They would make her sleep while she would still regurgitate violently from her nose and no change in the medications or doses brought her relief.  She was still constipated and a very committed and caring WIC nutritionist took special interest in my baby.  She would drive all the way to my base housing to bring me different kinds of formulas until, at last, we found one that didn't make my baby writhe in pain.  Now we had the regurgitation and colic left and no way to make it stop.  She would eat tiny amounts of formula then her body would violently reject it from her stomach and it would come shooting out through her nose.  Her airway would be blocked momentarily and she would look like she was drowning as her tiny arms would strike outward grasping at the air, her eyes wild with fear.
  One of us would always be close and rush to her to comfort her as she regained her breathing and cried from how scared she was.  Sometimes I would cry with her from the hopelessness I felt in watching her suffer.   During a short time when she was two months old and D had to leave town, my grandma came to stay with us and E was so miserable that my grandma would spend 24 hours a day tending to just her so I could take care of my other two daughters.  It was during that five days that I got diagnosed with active mono.  Exhausted from my own illness I researched colic remedies and came across Gripe Water and decided ANYTHING was better then the nothing that we were doing.  I jumped in my van and went to the one and only health store in Ridgecrest and spent a small fortune on the little dropper of colic magic.  It worked just well enough that she began to find relief and we could get what we called the "Happy Tongue" in place of a smile.  Oh how I wanted that baby to smile for me.  I finally saw signs of life in her eyes and could get her to connect to me by four months old.  Her suffering was not destroying the emotional fabric of every adult that worked to take care of her anymore.

E's Happy Tongue

  She slowly progressed from screaming in pain and waking up after one hour of sleep no matter what time of day to being reactive to D, myself, and her eager big sisters.  I kept vigil over her not really knowing what was wrong and just trying to get enough nutrition in her body for her to survive.  D and I had to get her through what we called her "episodes" when she would violently regurgitate from her nose every time we tried to feed her.  About two months after she was born her doctor switched from a local pediatrician to a Navy family practitioner for insurance reasons so that is who I would take her to for appointments.  My baby's condition never seemed to matter much to her no matter how small she stayed or how concerned the corpsmen would look at each other when they would take her vitals, weight, or length.  By the time E was losing weight every other week I took her in, I knew she was in trouble and when I asked for the forms to be filed for her to be seen by a civilian pediatrician, I began to learn the truest form of being the advocate of someone innocent and fully reliant on your fight for their wellness.