Kaitlyn's People

Kaitlyn had an appointment today with her infectious disease doctor. She now weighs 12 lbs 12 oz and is 23 inches long. She still doesn't make any percentile charts and is below the 5th for everything, but her growth is steady and we are happy with it.

The doctor took one look at Kaitlyn today and said, "Well, she looks just wonderful!" He was impressed with her mobility and attentiveness, as well as her smiles and thumb sucking. We are planning on about one more month of the anti-viral.

I thought I'd take a minute and introduce you all to Kaitlyn's People. We are so fortunate to live just down the road from a great hospital. Within the hospital is a place called the Children's Specialty Clinic. It's just what it sounds like, a clinic full of pediatric specialists. We go here for infectious disease, neurology, and developmental services. Audiology and ophthalmology are in different areas of the hospital. I'm so grateful we live where we do and have access to these amazing doctors. When Jason and I first moved to North Carolina, I joked that if we were ever going to get sick, now was the time to do it. Between Duke and UNC, we have access to pretty much any sort of doctor there is. I wasn't even pregnant with Kaitlyn at the time and I had no idea how much I would come to rely on those doctors...

So, anyways, here they are...

Pediatrician--Kaitlyn has a general pediatrician, just like any other kiddo. He was has been wonderful through the whole ordeal of CMV, and has had patients with CMV in the past. He checks up on us and always wants to see Kaitlyn when we are in the office, even if it is just to get some blood drawn. A nurse from his office called me the other day with lab results and told me that he had put a smiley face on the bottom of her lab report because it was so positive.

Pediatric Infectious Disease Doctor--This doctor oversees the administration of the anti-viral, valganciclovir. He takes care of the numerous problems that come along with it and monitors her viral load. He has been with us since day one, visiting Kaitlyn in the NICU, and he has taken very good care of us. He calls personally when there is a problem and always makes a point to talk with Kinsey when we are at appointments.

Infectious Disease Nurse--I LOVE nurses. I especially love the main ID nurse. She is the one that I follow up with about Kaitlyn's labs and she never seems to forget anything I tell her. She gave me her personally pager number and always returns my pages, even if they are at 9 pm on a Saturday night.

Pediatric Audiologist--We recently switched audiologists because our original one is pregnant and cannot work children that have CMV. Both have been wonderful. Really, the nicest people I have met throughout these past 5 months have been audiologists. They are so gentle with Kaitlyn and they were so compassionate when we first found out that Kaitlyn's hearing was going in one ear. We'll be dealing with audiologists for the rest of forever so I'm glad I like them so much. And I should make note that we see a pediatric audiologist. You can't find them everywhere. Losing hearing as a child is much different than losing it as an adult and a general audiologist simple does not have the training to effectively treat children. I've been told by numerous people that UNC has the best of the best.

ENT Doctor--We don't see him very often. Because Kaitlyn's actual ears work fine (it is the part of her brain that receives and decodes sound that doesn't work) and she can still hear out of one of them, there really isn't a lot that he can do for us. If Kaitlyn does lose more hearing he'll play a bigger role in her care, but for now, the audiologists pretty much handle it.

Pediatric Neurologist--We have a great neurologist. He's been doing it forever and I feel like he knows more than I could ever even imagine. I don't understand half of what he says (Jason does a little better than me in the brain area) but he is very kind. He also gave me his pager number and returns my phone calls after hours.

Pediatric Ophthalmologist--It appears that CMV has spared Kaitlyn's eyes, at least there is no evidence of any major problems, so we don't do a lot with the eyes. We do have a wonderful ophthalmologist though, and he is very thorough and very smart. He is also a very nice person. He isn't someone we will see often (hopefully) but I feel very comfortable with him being in charge of Kaitlyn's precious eyes.

I've explained her therapists before, we have someone that helps her learn to hear and localize sound and also a physical therapist. We may at some point add an occupational therapist and a speech therapist. We also have a service coordinator and someone assigned to be our advocate in relation to Kaitlyn's hearing loss.

In a few weeks we will see a team of developmental specialists at UNC. We will see them until Kaitlyn is 2.

It's a huge group of people. There are also numerous nurses, med students, residents, hematologists, and pharmacists that play a role in Kaitlyn's care. I am often amazed at how smoothly everything goes. I am also amazed at how much they really seem to care. Of course I wish that Kaitlyn had no problems and the only person on this list was a pediatrician, but that's just not the case and I am thankful every day that we have been privileged to meet so many wonderful people.

Sweet sleeping Kaitlyn, 3 weeks old