Thursday, May 19, 2011

Long Day of Dr. Appointments



Yesterday was a VERY long day of Dr. appointments. Jillian was the reason for two of the three appointments we had to attend yesterday. Britian was along for the ride and only had to subject herself to the last of the three appointments. First off for the day was a sweat test for Little Ms. Peanut. Her newborn screen tests came back with an elevated marker which can indicated Cystic Fibrosis. Britian's was higher than normal too but not nearly as high as Jillian's. So as a result Jillian had to go through the sweat test which is the standard first step for testing for CF. She is barely over the 5lb requirement for this exam so our hopes were not high that she would sweat enough to get good results. Our suspicions were confirmed when NO sweat absorbed on to the collection discs.

Now let's step back a minute so I can explain some personal history so that the next turn of events makes more sense. Before having children I was a biological researcher. I have worked on numerous projects but the biggest and longest of which was for the company that currently has a CF drug in late stage clinical trials. I was a biologist on the team that developed that drug so I know a little something about Cystic Fibrosis. I know my daughter doesn't have this disease.

Keeping all that in mind we still had to jump through the first hoop because of the newborn screening. The screening sent up a red flag in the state's system so we had to atleast attempt to close this issue. When no sweat appeared on the collection discs I told the nurses that I would not be subjecting her to anymore testing for this disease. The marker that the girls scored high for (immuno reactive trypsin, IRT) can also be elevated because of stressful delivery. Anyone that reads my girls' birth history will know that it is definitely classified as a stressful on. No one knows why IRT is elevated after a stressful birth only that the correlation has been shown. Everyone on Jillian's care team is in agreeance with me that no further tests need to be done to rule out CF.

The second appointment for the day was to test Jillian's hearing. While in the NICU Jillian did not pass hearing tests in both of her ears. Her right ear failed once and passed once while her left ear failed twice. The exam yesterday was to test both ears again to get true results. After the exam she passed in her right ear and failed (as I expected) in her left ear. We have a follow-up appointment in August for a more thorough exam on her left ear. It could be fluid in her ear or nerve issues causing her hearing loss. Ear tubes, hearing aide, or other devices may be necessary to remedy her hearing so that normal language and brain development can occur.

The final and longest appointment of the day was "high risk". High risk appointments are for all preemies that spent a considerable amount of time in the NICU. On the docket for this appointment was normal growth and development checks such as weight, length, head growth, muscle tone, reflexes, and oxygen tolerances. No changes were made to the girls' oxygen requirements, both clearly still need the amount of O2 that they are on. Reflexes and muscle tone look great for their age. Jillian is 5lbs 6oz and below the growth curves for her adjusted age. I know that she will most likely always be little, I am not worried a bit about her being off the curves. She is growing and developing and that is what is most important. It takes all shapes and sizes to make growth curves, some big and some little. Jillian is just in the little population, not every baby is going to be "average". Britian is 6lbs 5oz and is average all around for her adjust age. She is HUGE by all comparisons to what she started at. She is the same size as any normal term baby with huge kissable chubby cheeks.

All in all it was a good day and the girls did great being away from home for so long. Note to self though, I will not be wearing high heeled boots to anymore appointments, my feet were killing me at the end of the day. :)

Thank you for your continued prayers.

2 comments:

  1. I'm so glad to hear your long day went good over all. LOL on the boots!
    Keep advocating for those little miracles! I know that I feel very blessed to have the medical background I have when it comes to the kids because I know when to tell people to backoff and on the reverse I also know when to push for better answers or care. I'm thankful you have that advantage as well!
    Love and kisses from OR

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