Our Life Will Never Be The Same

I wish this story never needed to be written. The injustice my family is suffering through right now is unimaginable in the minds of most. The idea of hurting your child is one that should never cross a parent's mind and those who follow through are absolutely ...disgusting. Hearing the words "You are under investigation for child abuse." literally tore my heart out of my chest.

So, heres how it all began.

On Mother's Day of 2012 my sweet A entered this world with a bang. She wasn't supposed to be born until July, but she decided that she didn't need extra time - she was ready to see her family! Waiting for her arrival were her two sisters, M and K, her Dad, Matt - and the sweetest dog ever. She was a whopping 3lb 7oz of fighter. She only required about one hour on the CPAP before they took her off. She was on room oxygen from day one - a remarkable feat for a baby born at 32 weeks.

A stayed in the NICU for about three weeks and came home under 5lbs.  She has been the light of our world since then.  Fast forward about a month and A hits her gestational age of “term.”  It seemed like almost immediately she started having problems.  She stopped feeding as well, started spitting up, crying constantly, never sleeping…it was trying, but in those moments of calm – she was perfect.  She smiled day two in the NICU, we even got in on camera.  I remember clearly the nurse saying that people often believe that babies only smile that young if it’s gas – but she said it wasn’t true and A was smiling because she was seeing me.  That touched me and it got me through a lot of nights of sleeplessness and crying (from both of us!). 

On July 13^th (two months old) A weighed 7.16lbs.  She had doubled her birth weight!  We were elated.  Her Dr reviewed her health and was incredibly satisfied.  She was in the 31% for her weight and a whopping 85% for her weight to length ratio.  She was in the 18^% for length.  48% for head circumference.  It was so incredible to hear all these good things.  We set up another appointment just two weeks later to re-check her weight and keep her growth on track.

At her next appointment A’s weight had started dropping off.  It wasn’t anything significant at the time so we just carried on.  We again decided to come back in two weeks to check her weight again.  At the next appointment A’s weight had dropped a full 10% since the last month.  She was only 7.6lbs a full month after her due date.  She should have been gaining at a rate of 30g per day (she should have gained about two pounds in a month and instead only gained ½ a pound).  Unfortunately at this point we were set to go on vacation for almost a full month after her last appointment, but set up (again) to come in as soon as we got back.

On August 16^th we went in again.  A was up to 8.48lbs – dropping her to the 21%.  The trend continued. September 7^th, 9.03lbs – 12%, dropping her down to 18% from weight to length ratio. 

I was NOT happy with this and was incredibly concerned about A’s nutrition.  I know that lack of nutrients in infancy can lead to delays in development.  I told the Dr at the time that I was increasingly concerned for her weight.  She was struggling at home with feedings, she would flat out refuse food.  It was awful. 

I spent hours, days and nights, trying to get her to eat.  My life was consumed with A’s feeding – and I wouldn’t have had it any other way.  My child needed me and I was going to be there for her. 

After this appointment A had stopped stooling normally.  She had one small stool in three weeks.  It was hard as a rock and the size of a marble.  I called the pediatrician and was told by the RN there that “it was normal” and that “babies have constipation, it’s not a big deal.”  I KNEW something was wrong.  I just did.  I told her that I wanted to be seen.

September 21^st, 9.36lbs – down to the 8^th percentile!  At this time her weight to length was 6%, her head circumference dropped to the 18% (remember, it was at 48%!). 

A’s pediatrician, however, seemed to show no concern.  She switched her formula to Nutramigen and sent us on a referral to see speech therapy and occupational therapy at the local hospital.  We were told to bring her back in for a weight check two weeks after this “emergent” referral.  Two weeks passed before we even saw the referral come through.  Two weeks after that we finally were seen again in the Dr’s office.  On October 24^th, over a month later, A’s weight had dropped off to the 4^th percentile.  She was 5 ½ months old and weighed in at 10.25lbs. 

 At this point she was literally struggling to eat anything.  I was devastated by her lack of desire to eat anything and she was miserable 24/7.  She spent most days and nights crying, screaming, and falling asleep as soon as she got a few sucks off of a bottle.  She would turn her head away from anything and everything that went near her mouth and I was falling apart from the stress of worrying so much about her.  Again, we were told she was ok.  We would watch her.  It was ok. 

 By Monday the 29^th, she had stopped eating almost entirely.  She was taking 16 ounces a day.  She was impossible to feed.  I gave her a bath (730pm) that night and put her to bed – at 1030am the next day (30^th) she still did not have a wet diaper.  I was incredibly concerned.  I put a call into her pediatrician and sat, waiting.  Finally I got sick of waiting.  I got her dressed, got dressed and walked out the door – I was going to the Emergency Room.  I got a call as I left my driveway from a Lt on base that asked me to bring A in so they could “feed and observe.”  At the time I thought it was odd, but I went – you can trust your Doctor to make the right decision for your child – can’t you? 

 I sat in the office with A on the 30^th while the Lt watched me feed A.  I was in the office for over 2 hours while I force fed her bottles so they could “watch” me feed her.  I was told to come back the next morning and bring more formula – they were going to do a weight check and watch her. 

 I complied, of course, you can trust your pediatrician – can’t you?

On October 31^st, A was weighed again.  She had gained absolutely no weight.  She was still exactly the same.  10.25lbs.  I brought A to the clinic again so they could watch me feed her – but this time I had M and K with me.  I was set to meet a friend there who could take M and K to her house for the day so I could focus on A and talk to the Dr.  However, my friend’s daughter got sick and was puking in the clinic that day.  The Lt was very aggressive in telling my friend she “needed to leave the clinic” with her daughter as they were closed for the Halloween trick or treat event scheduled to happen that afternoon.  However, she was not going to take my children with her – why?  Because she had her own sick child to care for.  We were all exposed to the virus her poor daughter had, and that was not my concern.  My concern was that I could not put my children on another mother who had her own daughter to care for!  However, the Lt very aggressively tried to force me to allow them to leave with her.  I denied time after time.  Eventually she said “I can’t force you to stay, but it is in the best interest of your baby to stay here.”  I told her that she needed to have A’s Pediatrician call me – since she was too busy to see me.  I left with my girls and felt so …threatened.  Why was I being treated like this?  I brought my child to them and begged for help.  She wasn’t eating.  She wasn’t peeing.  What was going on?  That evening at 5:45pm I got a phone call from an Airman that said the Dr would like me to come back in the next day to get another weight.

The 1^st of November I again sat in the clinic – compliant, although my better judgment was screaming to find a new Doctor.  I got there at 10am and told the staff I had just fed her two ounces.  They weighed her and then exclaimed that she had gained weight!  It was amazing!  The Lt came out and said that I needed to feed her again (it was not even one hour after her last feeding).  I told her that she was unaccustomed to eating large quantities and that we were on a 2 to 2 ½ ounce every 2 hour schedule to try and help with her reflux.  However, because I was trying to do what my “Dr” wanted – I fed her.  After she finished that bottle the Lt said to feed her again.  I felt unwilling but complied because, again, I trust the medical professionals judgment.  After this massive 6oz consumption in just over an hour – I left the clinic.  I was told to come back again the next day.

A slept until 230pm.  When she woke up my mom fed her a 4oz bottle.  From 3pm to 9pm A threw up.  She threw up massive amounts of formula, mucous and clear liquid.  She screamed and cried, then fell asleep.  She literally could not stay awake unless she was puking.  I was terrified for her.  I decided that it was time to find a new Doctor. 

 
On Friday, the 2^nd of November – my life changed.  I woke up and got my girls ready, my mom and I drove to the clinic.  I told the Lt that I wasn’t staying and that I NEEDED to see her pediatrician.  Again, the Dr was too busy to sit with us.  We were told to come back that afternoon.  A had lost an ounce since the day before, as well.  I drove A to the local hospital and met with a new Ped.  Dr A.  Dr A explained that although A’s weight dropped drastically, she wasn’t as small as it appeared.  In any case, I told her everything about how she fell asleep, how I couldn’t get her to eat, everything.  She said that A falling asleep during feedings was worrisome due to the fact that it could be an issue with her heart.  She sent us down for x-rays of her chest and some blood work.  A did great with both and we were on our way.

 Back at the clinic that afternoon I sat around, waiting, for over an hour before my husband and I were finally able to see the Dr that we had waited for all week.  I told her that I was confused about why I had sat in her clinic that whole week and was frustrated at the abrasiveness of her Lt.  She said “that’s just how she is” as if that’s some kind of explanation for being threatened with my child’s welfare!  I told her that I was increasingly concerned with A and the fact that I couldn’t get her to eat.  Dr V tried to feed A herself and couldn’t get her to eat.  A screamed while we were there, she was miserable.  As soon as I got A to eat, she fell asleep.  I asked Dr V if A falling asleep at every feeding was unusual, she said no.  I was shocked.  I was JUST told by another Pediatrician it could mean a heart defect.  I then was told that Dr V was concerned that perhaps A’s lack of weight gain and inability to feed was due to an emotional disconnect between A and I.  That perhaps I lacked the ability to bond with her due to stress of having three children.  That I needed someone else to come in my house and help me handle this “high needs” baby.  That A was starving herself because she lacked the love and attention that a baby needs to thrive.  That her failure to thrive was MY fault.  I was told that night that Dr V had contacted Family Advocacy – a type of military CPS.  I left, shocked, at what I had just heard.  How on earth could this be MY fault?  I had spent day after day in her office trying to feed A.  I had called and told them something was wrong.  I spent hours and hours trying to fix things.  It couldn’t be my fault.  But then I doubted everything about my parenting.  Was I too busy?  Was I too stressed? 

 The answer is – No.  I wasn’t. 

After I got home I told my mom what had happened.  We were both appalled.  Then I realized I had a voicemail.  There’s no signal in the clinic so I thought that it was probably from the Dr we had seen that afternoon – calling to tell us A’s results were normal!  That voicemail was the most frightening voicemail I’ve ever heard, in my life.

 “Um, Hi this is Dr A.  I was calling to talk to the mother of A**** M.  This is concerning her chest x-ray findings and I think it’s enough that we would want to have her in hospital and have some further evaluation done.  If you get this message please call the pediatric on call number which is #, number again is #. Alright, have a good day, bye.”

My heart dropped.  I started crying.  I ran down the stairs and screamed that something was wrong with A’s heart.  I started packing a bag for me, for A and told my husband to pack a bag.  We were going to the hospital immediately. Something was wrong with my baby! 

 I called the pediatric on call Dr and talked to Dr S.  She explained that A’s heart was fine, but that she had some fractures to her ribs that were concerning.  They wanted to bring her in to run some routine tests on her.  I felt like a weight had been lifted off my chest.  Fractures I can deal with.  We drove to the hospital, checked in and went up to our new home.  Room 410. 

That evening A had a series of blood work and x-rays done on her.  They told me that she would have to have an MRI.  She would see an ophthalmologist.  She was going to get a barrage of tests to see what was wrong with her bones and why they fractured.  I felt relief knowing that she was in good hands and that they would discover why her bones were broken.

 Around 2:30am the Pediatrician on call (Dr S) came in and told me the heart-breaking news.  A had more than just two rib fractures.  She also had a fractured clavicle.  She had a fractured femur.  She had swelling on her skull.  I fell apart.  How did this happen to my child?  What was wrong with her that she would have these things on her? 

 The nurses that night were incredible.  Ashley and Amanda were the most comforting any human could be in that situation.  They knew that the next step was a CPS investigation.  They knew that 87% of fractures were ruled as child abuse.  But they gave me support.  They told me that they weren’t there to judge.  I cried and said that I had never in my life so much as held A too tight.  That no one could hurt her.  It wasn’t child abuse.  Something had to be wrong.  They were amazing, both of them.  I couldn’t sleep that night.  I started researching and trying to find out what happened to my sweet starr.   

Little did I know that our journey was just beginning.  Our life will never be the same.