Thursday, October 14, 2010


There is much to tell, so this post could turn out to be very, very long.

Llewellyn Rose is a miracle baby. I was told I wouldn't be able to conceive due to my PCOS. Yet here she is. She has a bunch of "problems"- Pierre Robin Sequence, Stickler's Syndrome, Amniotic Band Syndrome, recessed jaw, cleft palate affecting both hard and soft palate and all these things have a ripple effect on her- she's incredibly small, with her head shaped funny and requires a special nipple (Haberman) to eat. Eating must be done every 3 hours and must be under 30 minutes or she starts burning more calories than she takes in from trying to eat.

My pregnancy was difficult. My morning sickness had me hospitalized twice. I had gestational diabetes from my first appointment to confirm the pregnancy, so I had to stay on my Metformin and prick my fingers 4 times a day. I was hospitalized twice for low fluid (at one point I had NO fluid), once during my baby shower. The fluid came back on its own. No one knows how it went away or how it came back, let alone twice. All of these things combined caused me to have 2-3 doctors appointments a week the entire last trimester. She was breech the entire pregnancy, and her head created a permanent bruise in my side. This also caused her to not be properly seen during expensive 3D ultrasounds and during routine ultrasounds. At one point I was at one hospital and the ultrasound doctor mentioned they couldnt get a good look at her face and told me to come back. I went back a week later and he began to spout off about trisomy and downs and other problems she could have. He sternly suggested an amnio. I refused because there were no other problems with her- her heart, lungs, kidneys, etc were all developing fine. The doctor eventually stopped returning my calls so I switched to a better practice. Unfortunately, they sent me to another place for my ultrasounds and that doctor was convinced nothing was wrong, and conceded that even if there was, it was slight. HA.

After she was born she was in the NICU and then moved to the Special Care nursery. We had a fight with one of the special care nursery nurses who kept insisting there was no way she was coming home with us because she wasn't eating properly (to be fair, no one showed us how to feed her with the special nipple). The nurse was also ignorant to facts about breastmilk and colostrum. Luckily another nurse was there the next day who was a heaven-sent angel who helped us with everything and we were able to bring Llewellyn home that afternoon. She was hooked up to an apnea monitor for 8 weeks.

She has a team of specialists at our local Childrens Healthcare Hospital (CHoA). She has seen the feeding team 3 or 4 times already. Her eating is spot-on, thankfully. She's also seen the craniofacial surgeon, and her surgery to close the palate may come in January or February. She saw an ophthalmologist who told us about Stickler's due to her near-sightedness. She saw an ENT who said she has fluid behind her ears and during her palate surgery she will need tubes put in to drain the fluid and help with hearing. She saw a geneticist who thinks there may be nerve damage to the left side of her body (where her amniotic band mark is) but the genetic tests came back clean (no abnormalities or deformities in her chromosomes).

We've also seen evaluators from Children First and Babies Can't Wait (formerly Easter Seals). These are free programs(or sliding scale depending on the program) to members of the county to help with the baby if she falls behind her milestones. So far she is ahead in her motor skills, social skills, and verbal development so they haven't had a need to help us. Yet. We have met with a speech therapist that we will more than likely need in the future. They will check in every 3 months or so.

Currently we're fighting the government about getting her covered under different plans and policies. Social Security sent us a letter denying us benefits under her disabilities, but when I filed an appeal they sent it back saying it was premature because they hadn't denied us. *shrugs* We're still filling out our Katie Beckett/Deeming Waiver for Medicaid. I called our case manager but he has yet to call me back.

This is our story as it unwinds.

1 comment:

  1. i am praying for you i am sorry you have to go through so much craziness. she is beautiful and i am sure she will come out on top stay strong and stand tough