Thursday, April 23, 2009

13 Specialists We Saw The First Year

It goes without saying that my extremely premature daughter had innumerable neonatologists, nurses, and respiratory therapists on top of a "regular" pediatrician. But, just for more background, here are thirteen ADDITIONAL specialists we had to meet with during her first year of life:
  1. Pulmonologist- Our daughter came home on oxygen and had to be monitored for any apnea episodes. We reviewed her progress and underwent additional sleep studies with this doctor.
  2. Pediatric Ophthalmologist- She still sees this doctor to monitor her retinas (since she had Retinopathy of Prematurity) and to update her prescription (because she's very nearsighted).
  3. Radiologist- We brought C. home on an NG-tube (a tube that threaded through one nostril down into her stomach through which we fed her expressed breastmilk). It wasn't safe for her to eat by mouth because she showed signs of aspiration. I took her back to radiology every month to see if her swallowing had improved until we could finally "graduate" to thickened and, eventually, thin liquids.
  4. Neonatal Audiologist- Our little girl failed her newborn hearing screening while in the hospital. Honestly? While I'm sure this would ordinarily be traumatic news to receive, in the grand scheme of things, it was very minor to us. She was re-tested at five months of age and passed.
  5. Pediatric Neurosurgeon- It was discovered that our little girl has a cyst on her brain. It doesn't appear to cause any issues whatsoever and, apparently, lots of us have them. Who knew? Anyway, we go back periodically to make sure it's still asymptomatic.
  6. Orthopedic Surgeon- At ten months old, C. broke her right femur. She had to be in a hip-spika cast and this had to be put on by a surgeon at the children's hospital.
  7. Infectious Disease Specialist- Our daughter tested MRSA- positive and this was the only person who could explain what this "meant" to me...
  8. Pediatric Developmental Psychiatrist- At around two years of age, we met with this psychiatrist to evaluate how C. was doing in terms of interration and problem-solving skills.
  9. Nutritionist- For the first year or so, I would have to periodically log every morsel of food or drink that our little girl consumed to make sure it measured up to the high standards they set for her. When your baby starts out SO far below the charts, it takes some work to even get ON there...
  10. Retinal Surgeon- As I mentioned above, C. had Retinopathy of Prematurity which meant her retinas were starting to detach. This would ultimately have left her blind. An excellent neonatal retinal surgeon in Chicago (one of only three in the nation) performed the surgery to repair the situation.
  11. Feeding Specialist studying extremely low birth weight babies- We agreed to participate in a study geared toward better determining the caloric needs of these teeny little babies (all weighing in at less than 2 lb 2 oz at birth). It was non-invasive, but time-consuming. We were happy to be able to possibly help other small babies in the future.
  12. Swallowing Specialist- When C. started on solids (kind of a misnomer, in my opinion, since that refers to baby food and cereal, but I digress...), she had a severe tongue thrust issue that resulted in basically NO food making it into her stomach. An occupational therapist with special training in feeding issues helped us work with our daughter to overcome this.
  13. Developmental Evaluation Team- From the time she was four months old (and, really, zero months old if you "corrected" her age to when she should have been born), the early intervention team would come out to our house to evaluate how C. was doing. We've definitely had therapists involved in our lives over the years but, again, our girl actually needed far less support and intervention than many preemies.
So there you go. A snapshot of my life in that first year. And you want to know the truth? We got off SO easy...

Having a preemie changes everything.
This post is linked to Thursday {Thirteen} .


Crystal Darnell said...

oh man, this brings back some memories. Do you mind if I borrow your "Thursday Thirteen" idea? Thanks for the comment about the car seat, there are sooo many to choose from.

Tracey said...

What amazing events unfolded for you. I'm sure you hear lots of stories, but here's another one. My nephew was born when my sister-in-law was 27 weeks pregnant and he weighed in at 2 1/2 pounds. He was in the NICU for about a month, but went home healthy and is now a small but mighty two-year-old!! Thank God for His blessing in my nephew's life and yours.

Heather Benza said...

Wow we lucked and saw fewer specialists. I wonder if my 2 pound 2 ouncer benefited from your study participation. He got MCT and human milk fortifier added to his breastmilk to produce the appropriate amount of calories.

Suz said...

Wow honey! You've been through so much, but I bet you love your little girl all the more for it!

My little guy had some eye issues to we found out a 3 months. Dr. told us he might be blind and wouldn't tell us any more than that. Dr didn't even tell us all the other possible things that could be wrong ... seems with his condition -the optic nerves didn't form correctly- he could have brain & hormonal abnormalities as well.

Now he's almost 4 and doing great. His vision isn't normal, but good. Praise God! I did a lot of research on my own and asked a lot of questions. He's seeing an endocrinologist because it's something I wanted. We have to be our children's support and advocates... no one else in the system really looks out for them like parents do!

Keep up the good work Mom!

Jack said...

I would love to share your story with the world in the next volume of Blessed with Tragedy. I would like to send you the first volume if you would send me your address to
Your story is very touching and I believe that your spirit wants to help others like I do.
Please send me your address and I will mail it promptly.