Riley’s Story Part 2 – Problem discovered…and solved – or not?

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Yesterday we covered Riley’s relatively normal pregnancy and childbirth.  As I said then; for the first three months everything went smooth – except that she had to sleep propped up in her carseat.  She would not sleep lying down at all.  Ever. At three months old, I went back to work.  I took a part time evening job waitressing at Bob Evans.  The first week of work, things got crazy at home.  I would leave and Riley would scream all night until almost 10PM.  This was beyond colic, this was intense, pained screaming.  Archie blamed it on my return to work the first couple of nights…but then he told me something was wrong. Archie’s instincts have a way of being right.  So, when I had to leave work early (in my first week) to come home because she was so horribly bad off, we determined that we’d call the pediatrician.  We were told that if it didn’t improve to make a sick appointment in the morning (it was a Saturday).  The next morning we called and made the sick appointment, not wanting to wait until Monday.  We took her in and learned that she’d flatlined in her weight gain.  In the month since her previous appointment she’d only gained about 3oz.  Listening to our descriptions of what was happening the ped suggested that it was likely GERD (reflux), and perscribed Zantac.  He told us to try giving her some formula after breastfeeding  to weigh down what she was eating (a directive I regret following…but that’s another story).  Then he scheduled some tests for us to get a confirmation of the diagnosis. The next week we were at the children’s hospital with her in the X-ray department having a fluoroscopy performed.  I was standing there watching as she swallowed the barium right up.  I watched it go down, and stared in shock when it shot back up VERY quick, stopping at her throat before going back down and shooting back up again. Our diagnosis of silent reflux confirmed, we followed another of the doctor’s directives that I regret….adding cereal to the formula we gave her.  Over the next few weeks she went in for weight checks constantly, but her weight gain didn’t rebound.  So, under my (supposedly) BF supportive docs suggestion I pumped and switched exclusively to formula w/ cereal added.  He said that we would get back to BFing once her weight came back on an even keel. But the weight never came back, and neither did the breast feeding.  Despite the treatments for GERD working in other ways (she would lay down to sleep, the screaming stopped)…her weight couldn’t seem to come back where it was supposed to be. Eventually it got to the point where her weight was in the -25%.  She was at least a pound beneath the lowest line on the growth charts, and we had no idea what to do about it, where to go next.   She was one year old and weighed 15lbs to her 29inches.  She was a beanpole – skin and bones. Her hair was thin and practically non-existent. It was around this time that we ended up switching pediatricians for many reasons.  With the new pediatrician came a new look into the weight issues Riley was having.  A pair of fresh eyes that would help us try to find an answer. In came Dr. S.  She has been our joy, our savior, and just the best damn pediatrician ever.  She started the two year search for answers… ******* I’ll continue on Monday with the first stage of our search…from bloodwork, to the specialist and our introduction to Early Intervention! Read more »

Riley’s Story Part 1 – Pregnancy and Childbirth

When my blog was closed for a couple of weeks I received an email from a new visitor.  Her daughter was FTT and they were looking at a possible RSS diagnosis, among every other measure being taken.  She asked me for our story and shared hers.  Since her last email I’ve been busy and my brain still isn’t functioning so I hadn’t gotten back to her yet…but I thought I’d start to try to answer her question here.  Starting at the beginning of our special needs journey that we’ve gone through with Riley.  From the beginning… ********* For the most part, my pregnancy with Riley went smoothly.  I had minor issues with morning sickness (hello Saltines!), and some major skin issues (hello ringworm, dry skin, and excema!).  Otherwise, things went well.  She, and I, grew normally until around 20 weeks.  That was the first time the ‘huh‘ factor came into play.  I started measuring just a little small.  It wasn’t a panic inducing moment by any means, just a ‘huh‘ and a ‘we’ll monitor it’.  My doctor loved excuses for extra ultrasounds (he likes to keep Mama’s happy by letting them see their babies), and he guessed that the small measurements may produce cause for a third trimester ultrasound.  As the weeks progressed I continued to measure small, and so I received another ultrasound at about 32 weeks.  The ultrasound determined that Riley was small, too.  Not a whole lot, but a week or two behind.  Still not reason for panic, but reason for monitoring. For my 36 week checkup I received another brief ultrasound.  Riley was growing, but was still showing behind.  My OB told me to keep drinking plenty of fluids and he’d check us again in a couple of weeks. At 38 weeks I was already 2 cm dilated, and my measurements were still small.  A final ultrasound revealed that in the previous two weeks, Riley hadn’t grown at all.  She still looked healthy, but now looked about 4 weeks behind.  My (wonderful!) OB looked between Archie and I and said, “Well, we have a diagnosis of IUGR, probable low birth weight.  It’s a medical reason to induce, would you like to go now?!”  It took one look and two seconds for Archie and I to say, “YES!!”  We drove home from the doctors making calls, picked up our bags and drove the three minutes from our house to the hospital.  Idiot me didn’t eat before we went in…but that’s a different story. I was hooked up to the IV and monitors, where it was discovered I was contracting.  At three minute intervals!  I had no idea.  They started the pitocin, and within half an hour I DID know I was contracting.  Long story short, eight hours later Riley pushed herself out (yes, you read that right, I didn’t push…AT.ALL), and came out blue with a nuchal chord (around her shoulder).  Luckily, she immediately started screaming and pinking up, but the nurses scooped her up and took her away anyway…there was no instant holding.  She was born 6lbs 7oz.  She was long and skinny, with a popeye effect…but she was beautiful and fair.  She took to breastfeeding like a champ and was released from the hospital in the normal amount of time. The first three months were wonderful.  She was small, but grew on the curve.  She fed constantly, but would not sleep lying down.  It was our first hint of trouble, but we didn’t realize it.  I just let her sleep in her carseat.  It propped her up at the right angle and she was too small to roll out.  The first three months were magical…she’d fall asleep in my arms, she was tiny and cuddly and totally lovable.  We didn’t know what a hectic world and stressful life we were about to embark on…we just saw oru beautiful fair princess staring back at us… ******* For sake of length and sanity, this is to be continued :D  Tomorrow, I think. Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.


How RSS affects you…

So now that we know some of the signs and symptoms of RSS..how does it affect us? How does it affect me, as a parent…and Molly, as a toddler? How can certain symptoms affect your life? 1. Hypoglycemia Can cause child to wake frequently at night, past a year of age Can cause extreme crankiness that’s eased with feeding. Produces ketones in the urine Makes it difficult to wake up in the mornings Excessive Sweating Molly had all of these (well, besides the ketones…we never tested for that). When she was about 18 months (a year ago) she suddenly started waking just about every night at 2-3AM…MOANING. I had to feed her every night at 1AM for a very long time to get her to sleep through the night. 2. Lack of interest in eating Enter vicious cycle. Your child has a lack of interest in eating…it makes them eat little, which causes hypoglycemia, which makes you need to feed the child more frequently. You have to beef up the calories of every bite. Welcome butter, sour cream, dry milk, wheat germ, peanut butter (if allergies are not present), dry-milk…and the wonderment of DuoCal ($25 a can!! TOTALLY not covered by insurance! YAY!) The other vicious cycle – no interest in eating, but they have to eat, so you try to get them to eat smaller meals more frequently, so they assert themselves by refusing those meals, so you have to try to supplement more…and round and round and round! This is STILL a sticking point for us. Molly is now a little more interested in eating…but I swear her stomach is the size of a peanut. After just two chicken nuggets, she’s full (that was her lunch today). She will still drink us out of house and home with the milk, though (chocolate only, please!)!! 3. Oral Motor and Speech Delays/Fine and Gross Motor Delays Therapy, therapy, therapy. Did I mention therapy? That’s how we’ve come to have our life affected by this. Of course, on the flip side…some of these delays are enhanced in our case by the Autism. While most RSS children grow beyond these delays to lead ‘normal’ (we really use this term loosely in our house), healthy adult lives…we’re facing a slightly more difficult hurdle. 4. Physical aspects Currently we have little repercussions for any of this. I know for my DH he faced a myriad of issues because of his appearance (he still doesn’t believe he’s attractive)…and he fears the same for Molly. I have to hope that how we treat the (relatively) minor physical abnormalities she’s facing will help determine how she deals with them. Me, I don’t notice these so much…because she is beautiful and they are rather minor…well, except she appears frighteningly skinny 🙂 5. Precocious Puberty Yet another thing we aren’t facing currently…she is only 2.5 *lol* I have to admit…I FEAR the day that this happens…especially since we still aren’t sure about the severity of her autism. BUT…I suppose it’s something we’ll deal with soon enough (that is TERRIFYING!!!) Those are the key ones I can think of now. If I forgot anything please feel free to nudge me and ask…I’ll be sure to add it!! Read more »