The Beginning

Normally I don't believe in writing blogs.  But I wanted to do this for my daughter, so she can see how far she has come.

Today was a hard day for my husband and myself.  Our 16 month old daughter got a tentative diagnosis of autism.  While we love her very much, this is a hard diagnosis for me, because my oldest sister is on the spectrum, and my niece and nephew are also autistic.  We knew that when we had our daughter, there was a possibility that she could have been autistic as well, but we took the chance.  It doesn't change anything for us.  As I said, we love our daughter, but it does mean changes in the household and changes in how we learn to deal with our emotions and the emotional/developmental needs of our baby.

Today was our introduction into the world of birth to three.  But before I begin to talk about those services, I would love to talk to you about why we thought my daughter needed these programs and what we went through to get her there.

Sophia was born a month premature.  She was 19 1/2 inches and 6.9 pounds at birth.  I went into labor with her at 9:30 in the morning on December 3, and by 7:35 at night, after two pushes, there was my very red baby.  (Pictures to come).  Immediately after she came screaming into the world, we knew we had ourselves a little angel...an excitable angel...but our angel non the less.

The day we were to leave the hospital with our squealing  squirming bundle of nerves, I was told that her bilirubin levels were very high.  For many who don't know, this is when her liver isn't able to process out red blood cells that have broken down.  This is what causes baby jaundice and boy, did she have jaundice.  But for us, it wasn't the yellowing of the skin, or yellowing of the whites of the eyes, oh no, she was red, bright red everywhere.  

So here I was, a new mom immediately worrying about her liver functions and worrying that she may have needed surgery, fearing the worse.  Thankfully, we had some wonderful visiting nurses who came every few days to take her blood levels and make sure she was growing.  But she had lost more than 10% of her birth weight which was not good.  If she did not gain weight, and gain it soon, she was going to be put into the hospital, and frankly, we were terrified.  My husband, bless his soul, was calm, cool and collected.  Me?  I was shaking worse than a chihuahua who consumed too much caffeine. 

Since we lived over an hour away from where my husband worked, he had to take the car everyday which meant that Sophia and I couldn't go to the doctors for treatment as we were told not to take a new born on the bus.  So we had to get a billy blanket.  This isn't a blanket at all, but a piece of hard plastic that is lite up worse than an overzealous Christmas tree.  It was hot, and it was heavy, too big for my small bundle.  For the first week and a half after her birth, she slept in my arms, with this blanket wrapped around her side, pulling at her.  Every few hours, we were to switch sides so she didn't get burnt from the lights.  The purpose?  To ease the pressure off her liver and help break down those pesky red blood cells.

After what seemed like endless nights of no sleep, and not from midnight feedings, she was released from the billy blanket.  Thank god.  I hated that thing, and I feared, it hated me too.  Finally, my squealing infant was only red when she cried.  Or so we thought.

This started the next saga for us.  Sophia not only had issues with her liver, but she also had issues with her digestion.  Two weeks after her birth, while visiting my mother in law in the nursing home, an overzealous nurse with a fondness for babies, asked to feed the little darling.  What a mistake.  She threw up curdled milk, all over herself, all over my husband's suit that he was wearing for Christmas Eve mass, all over the nurse but thankfully managed to avoid grandma and mom.  

So here we were.  Did we talk to the doctor about her amazing ability to projectile vomit all the way across the room, or do we wait it out?  The decision was made for us when she began to throw up after every feeding.  At the time, we were with WIC to help us pay for the stupidly priced formula she required.  So we decided instead of talking to the doctor, we would talk to the WIC office.  They were the first to tell us about a milk protein allergy they suspected Sophia had.  Well news flash.  We had no idea what that meant or how it would affect Sophia.  The WIC office recommended we switch to soy milk, which we gladly did, hoping that she would stop vomiting up her milk an hour after she consumed it.

At her next doctor appointment, we told our Pediatrician that we had switched her to which the doctor told us that sometimes babies are just pukey and that we had a pukey baby.  He recommended that we stop switching her formula.  At this point, we were happy with soy, although it stunk.  So we agreed to stop switching her formula and went about on our merry way.

If anyone thinks that is the end of the drama, head to detention.  Do not pass go, do not collect $200.  Nope, our little angel turned out to be a devil in disguise as she also...wait for it...had a soy allergy.  The baby eczema we kept asking about, the yeast infections on her neck we panicked about and couldn't control, all because of her allergy to the soy formula.  Worse for us was the straining to poop.  She would strain for hours on end trying to pass tiny nuggets.  Her little face would turn red, and she would just scream for hours as her stomach blew up like a balloon from all the trapped gasses and bowel movements that refused to come.  An hour after she would take a bottle, we would notice a rash in her head and her eyes seemed to swell.

So off to the ER we went.  Now, if your a mom and you trust your gut to mommy instinct, you will know that most of the time, even though doctors tell you to trust those instincts, they do not LISTEN!  So we were released from the ER no step closer to figuring out what was wrong with our baby.

I had heard through a mutual friend, that my sister's two kids had the same issues and were helped by Nutramigen.  Well off we went to buy an even more heinously priced formula, $25 for one jar of food that lasted us barely two weeks!  All of which we had to pay out of pocket for, which meant that the husband and I did not eat for a few days.

Once on Nutramigen, all the pimples, the eczema, the straining to poop, the swollen eyes, the puking, all of it gone just like that!  So off we went to the doctors to tell them they were wrong and we, HER PARENTS, were right!  If only they believed us.  We were allowed to get a order written for WIC to pay for her formula, THANK GOD FOR WIC, and that was the end of that line of conversation.

When Sophia was 2 months old, we had an opportunity to move closer to my husband's work, so off we went, moving in with a friend of my mother's.  Things went great for us for a while.  That is, until her 4 months shots in which both her legs blew up like salami, and she began to wheeze.  An hour trip to the doctor for them to say nothing was wrong AGAIN!  We let it go though in our hearts, we knew something wasn't quite right and we were switching pediatrician anyway, so who cared what they thought right?

When Sophia was 6 months old, we finally got her into a pediatrician that specialized in allergies, and we tested her for food based allergies.  Validation at last!!!!!  She had a milk protein and soy allergy that required us to carry an epipen around should she come into contact with soy again.  Pediatrician- 0...mommy/daddy-2.

Our saga should have ended there, but unsurprisingly, it did not.  We knew something wasn't quite right with Sophia, when at 6 months of age, she learned how to take off her diaper and throw it.  Mind you, this was a kid who had not yet learned to sit up, crawl or roll over but she was able to take off pants and her diaper!  Yup, we had an evil genius on our hands.  

After figuring out that we needed to keep panties on the little beastie, we had a huge developmental leap.  The week of my husband's birthday, she started babbling.  A day later, she sat up on her own.  A few days later, she turned over.  A day after that, she was crawling.  I kid you not.  In one week, we went from a silent, unmoving baby, to a kid you had to watch every minute.  Great birthday present for dad though don't you think?

With normal development continuing to hit at the appropriate times, we were thrilled to have made it to the first year.  All the endless  sleepless nights were finally over, her digestion issues cleared up, and she was smart as a whip.  At 12 months of age, Sophia was able to feed herself with a spoon, and eat with a fork.  She surprised all of us by saying, mama, dada, thank you, mnammnam, a muppet phrase, bye.  Her height was still in the 95% and her weight was still low in the 30%.  

So tell me, if I had such a bright child, why did I start to research birth to three and ask for help?  Well this darling child couldn't go into her first year like a lamb.  Nope, she went like a lion, and it wasn't pretty.

First, we noticed that we were unable to change her clothes without temper tantrums.  baths, which used to be fun, were now a test of will, usually with her father and me giving up and letting her run around the bathroom naked to dry off.  Socks went on, and socks flew off.  Hair fell into her eyes, bows followed the way of socks.  The bright child who could say five words?  Now she could only say 2, Hi and dada.  She did manage some growth, learning to walk at 13 months and walking up stairs at 12 months, until she fell and hit her head.  But yeah, development slowed down and went backward.  This is why we decided we needed help.

Fast forward to her 15 month appointment.  Sat down with her pediatrician after a record breaking snowstorm, and talked about her development, or lack thereof.  Doctor recommended birth to three and said she would make the referral.  No referral made.  Mom began hyperventilating and sought the help of a shrink.  Shrink referred mom and dad to DCF who finally took mom serious.  In case you are keeping track, MOM/DAD-3, Pediatrician-0.  

Two weeks after the referral, Sophia was examined by professionals at birth to three.  Next post...all about birth to three and what they think is up.