...She Isn't Coming Home With Us...

Our first day in the hospital was heart wrenching.  A ended up needing fluid.  After 14 hours of fluid she started having wet diapers.  She was dangerously dehydrated – although I had spent hours in the clinic that week, no one bothered to assess her physical condition.  She refused food while we were there the first day and was allowed to be sedated for her MRI due to her absolute refusal to eat.

The MRI was one of the hardest things I’ve ever had to watch my child go through.  She was sedated through an IV in her foot and I held her until she fell asleep.  Right when I thought she was out she would wake up and cry again.  I held her tightly and sobbed.  The MRI technician wiped my nose for me, hugged me and told me that it was ok to cry, it was scary.  I wouldn’t be a good mother if I didn’t cry.  A’s nurse, Becky, gave me a hug.  She reassured me that she was with A the whole time and wouldn’t leave her side.  After I left the MRI room I literally felt like collapsing.  I cried, I couldn’t even control it.  My whole life I’ve been non-emotional.  I don’t cry.  I’m not a crier.  Anyone who knows me knows that.  However, I cried.  I cried and I apologized to A for having to go through this.  I prayed that they wouldn’t find anything in her head because I don’t want her to have to suffer with a condition her whole life. 

I went back up to the room and waited.  It felt like an eternity.  A was brought back in by Nurse Becky who told me that she did wonderfully.  She was still pretty sleepy but I could offer her a bottle.  A ate!  She ate and ate and ate!  In 6 hours she ate 9 ounces.  That’s more than half of what I had struggled to get her to eat in an entire day.  I felt so relieved. 

Around 9pm A’s nurse came in and told me that she was going to give her the Zantac at a new dose.  She said that the Dr adjusted it because based on A’s weight she was being dosed with far too much Zantac.  She was on 1.4ml twice daily when she only needed to be on 9.2mg twice daily!  Did you know that one of the side effects of Zantac is nausea and vomiting?

The Nurses and I began to notice that after each dose of Zantac, A began to eat less and less.  She would refuse food.  She would throw up.  I told her Dr that I felt like she might be allergic to it. 

I had been writing all of A’s feedings since the middle of October.  I was trying to keep track of her intake since she wasn’t gaining.  This proved that Zantac was part of the issue.  Every Zantac dose, she stopped eating.

On November 5^th, A’s nurse asked if she could try and feed A.  I told her absolutely yes!  If she could get her to eat I would love to learn her tricks.  She tried and had the same result.  Dr Petersen came in and tried.  She said that it was bizarre.  She had never seen a baby with such an aversion to a bottle.  She told me that she would send up Kathryn, the Occupational Therapist.  Kathryn tried to feed her.  She tried to massage her.  She tried to interact with her mouth in normal ways and A would scream, cry and turn away.  She told me that it was definitely not normal for her to react that way.  We discussed the history of A.  She had worked with her when A was in the NICU.  She knew that at one point A was a normal baby.  I told her the theory of her original pediatrician.  She laughed.  A’s refusal to eat was not caused by me.  There was nothing I could have done.  Her reflux, coupled with the conditioning caused by realizing that when the bottle was put in her mouth and the fluid went down, she spit up and it hurt, caused her to have a complete oral aversion.  The fact that I tried day and night to feed my child didn’t help.  The fact that I reached out to a Doctor and instead of examining WHY she wasn’t feeding she assumed that the cause was emotional – caused her complete oral aversion.  At 3:30pm, A got a feeding tube.  I cried.  I cried and cried.  I felt like I failed as her mother.  How could I let her get to this point?  How can a baby not eat…that’s all they do.  They eat, poop and sleep.  That’s just what a baby does.  My body failed to keep her in past 32 weeks and my ability to protect her failed her from getting fractures and now my poor baby was getting a tube put down her nose and throat to feed her because I FAILED her.

My heart has broken more in the past week than I’d ever like to admit.  It’s not fair.  It’s not right.  I know that I am a good mother.  I know that my husband is a good father.  We don’t agree on everything.  We have different views about a lot of things.  We agree on one thing, for sure.  Our children are what we live for.  Without them, we aren’t a family.

After A’s feeding tube was put in she was set up on Elecare – an amino acid based formula.  She has a milk allergy.  She was most likely refusing to eat because she was allergic to it.  This is also a point that was brought up to Dr V by our Infant and Child Development specialist, Michelle. However, along with many of our other concerns, this too, was dismissed.

A is doing well on her feeding tube.  She doesn’t like it, but she is tolerating it.  She has only pulled it out three times.  The first night on continuous feeds A still didn’t gain any weight, she also somehow managed to lose weight!

The second day Dr P bumped her calories to 22 calories per ounce.  She still lost weight.

Finally, A has started gaining weight.  She is tolerating her feeds very well as of right now.  I’ll get back to that in a minute.
 

Slowly A’s test results have come in.  Her blood work isn’t perfect.  Her calcium is high.  Her phosphorus is low.  Her vitamin D is normal.  Her parathyroid hormone is low, which is good because it’s acting in response to the other values being off.  None of the tests reveal why her bones are fractured.   

I have brought up a number of “rare” disorders in order to help in an effort to clear our name from this disaster.  However, none have been considered of any magnitude.  I have offered Osteopenia of Prematurity (a disorder that affects virtually all infants born under 1500g, A was 1522), Temporary Brittle Bone Disease (a disorder of weak bones that could explain fractures in infants that were restricted during the last trimester or born prematurely – because I had IUGR, oligohydramnios and A was born prematurely, she fits this bill exactly), and Osteogenesis Imperfecta (a disorder of brittle bones that is permanent.  It affects 1 in 10,000 and type I is the most common). 

Our hospital will not test A for Osteogenesis Imperfecta.  I don’t know why.  I have asked about having a geneticist come in and was told that we will get a referral after discharge. 

 
However, A isn’t going home with us.

You read that correctly.

A isn’t going home with us.