Update from Thursday, June 11 and Friday, June 12 - We had a full day at the hospital on Thursday. Our first appointment was at 10:30am with Dr. Chi, Elle's Endocrine doctor. I had to hook Elle up to her feeding machine while we drove to the hospital and I didn't stop the machine in time so our li
ttle princess was a wee bit full by the time we got to the hospital. I measured out the amount she was supposed to have before we left the house - but I'm pretty sure I didn't look at the numbers correctly (who knows). Let's just say she had her Thanksgiving meal on June 11! It wasn't too incredibly bad but it did put her to sleep for a majority of the morning. She woke up at the end of the endocrine appointment - just in time for Dr. Chi to see how adorable she is! The endocrine appointment went well. Basically all the doctor told us was that the next time Elle is in stress (sick or anything like that) and she has her blood drawn - we need to make sure her calcium levels are checked. The doctor explained that when Elle was born, her calcium levels were extremely low - which could have led to the seizure she had 4 hours after birth. She received calcium for a long time while she was in the NICU and eventually they stopped the calcium to see if her body would self adjust - which it did. The reason the doctors want to check her calcium level at a time of stress is to see if her body produces calcium during those times. There are different glands that are affected by CHARGE syndrome - which leads to the making (or not making) of calcium and other nutrients. We will see if she has those glands and if they are functioning should she ever go into distress. For right now, the doctors are satisfied with her progress and the last blood sample they took (they didn't even take any blood at the appointment). The next appointment we had was with audiology at 1:00pm. I was dreading that appointment because Elle had to be completely asleep for the entire 3 hour ABR test. How do you force a 11 week old baby to sleep - especially one that just slept the entire morning? Bigger kids that get the ABR test are sedated - but not infants! We got into the room and I hooked Elle up to her machine to feed her lunch. We brought the boppy this time, so I settled into a chair with her. She wanted nothing to do with sleeping! She squirmed so much she threw off some of the sensors the doctor put on her head! They had to be re applied several times. I also brought the sleeping wedge that we put in Elle's bed at night so she is inclined a little. I tried to put her on that so she would fall asleep - but NOPE! She wanted nothing to do with that either. I picked her up and just as I was about to get frustrated and ask to re schedule -she fell asleep on my chest - on her tummy. She never sleeps like that so I was shocked - but she was out! The doctor was able to do the ABR test, a bone test on her inner ear, the newborn screen (again) and make ear molds for hearing aids all while Elle slept! Hallelujah!! The ABR test showed that Elle has moderate to mild hearing loss in her right ear and moderate hearing loss in her left ear. the last time we did the ABR, Elle woke up in the middle of the test so the audiologist was only able to diagnose the moderate hearing loss. With the completed ABR, she was able to get a more exact measurement on what Elle hears. She was completely shocked when she did the bone test on Elle's inner ear because it showed that at least one of her inner ear responds - which means she can hear. Because of this finding, we will now have to go and see Dr. Edmonds because it could possibly mean that Elle's hearing loss may be fixable with surgery (tubes in her ears or something along those lines). She still did ear molds to be on the safe side so we can go ahead and get hearing aids made if Dr. E says the problem isn't fixable. We don't go see Dr. E until July 6 so for now we just wait. Dr. Eason (the audiologist) showed us baby hearing aids and they are absolutely adorable! They are super sleek and streamline and when we put the sample on Elle - you couldn't even see it! If she needs hearing aids - my vote is still on pink - possibly pink with sparkles!!
ttle princess was a wee bit full by the time we got to the hospital. I measured out the amount she was supposed to have before we left the house - but I'm pretty sure I didn't look at the numbers correctly (who knows). Let's just say she had her Thanksgiving meal on June 11! It wasn't too incredibly bad but it did put her to sleep for a majority of the morning. She woke up at the end of the endocrine appointment - just in time for Dr. Chi to see how adorable she is! The endocrine appointment went well. Basically all the doctor told us was that the next time Elle is in stress (sick or anything like that) and she has her blood drawn - we need to make sure her calcium levels are checked. The doctor explained that when Elle was born, her calcium levels were extremely low - which could have led to the seizure she had 4 hours after birth. She received calcium for a long time while she was in the NICU and eventually they stopped the calcium to see if her body would self adjust - which it did. The reason the doctors want to check her calcium level at a time of stress is to see if her body produces calcium during those times. There are different glands that are affected by CHARGE syndrome - which leads to the making (or not making) of calcium and other nutrients. We will see if she has those glands and if they are functioning should she ever go into distress. For right now, the doctors are satisfied with her progress and the last blood sample they took (they didn't even take any blood at the appointment). The next appointment we had was with audiology at 1:00pm. I was dreading that appointment because Elle had to be completely asleep for the entire 3 hour ABR test. How do you force a 11 week old baby to sleep - especially one that just slept the entire morning? Bigger kids that get the ABR test are sedated - but not infants! We got into the room and I hooked Elle up to her machine to feed her lunch. We brought the boppy this time, so I settled into a chair with her. She wanted nothing to do with sleeping! She squirmed so much she threw off some of the sensors the doctor put on her head! They had to be re applied several times. I also brought the sleeping wedge that we put in Elle's bed at night so she is inclined a little. I tried to put her on that so she would fall asleep - but NOPE! She wanted nothing to do with that either. I picked her up and just as I was about to get frustrated and ask to re schedule -she fell asleep on my chest - on her tummy. She never sleeps like that so I was shocked - but she was out! The doctor was able to do the ABR test, a bone test on her inner ear, the newborn screen (again) and make ear molds for hearing aids all while Elle slept! Hallelujah!! The ABR test showed that Elle has moderate to mild hearing loss in her right ear and moderate hearing loss in her left ear. the last time we did the ABR, Elle woke up in the middle of the test so the audiologist was only able to diagnose the moderate hearing loss. With the completed ABR, she was able to get a more exact measurement on what Elle hears. She was completely shocked when she did the bone test on Elle's inner ear because it showed that at least one of her inner ear responds - which means she can hear. Because of this finding, we will now have to go and see Dr. Edmonds because it could possibly mean that Elle's hearing loss may be fixable with surgery (tubes in her ears or something along those lines). She still did ear molds to be on the safe side so we can go ahead and get hearing aids made if Dr. E says the problem isn't fixable. We don't go see Dr. E until July 6 so for now we just wait. Dr. Eason (the audiologist) showed us baby hearing aids and they are absolutely adorable! They are super sleek and streamline and when we put the sample on Elle - you couldn't even see it! If she needs hearing aids - my vote is still on pink - possibly pink with sparkles!! 
Elle asleep on my chest with the silicone in her ears for the ear molds..a mini Princess Leia
I absolutely love getting Elle dressed everyday. Right now we are trying to figure out what fits her and what doesn't so every morning we go through no less than 4 outfits. She is tiny for her age(even though she looks huge in pictures - I get really close up) so she still fits in newborn and some 0-3 month stuff. Everything else just swallows her. I pulled out this outfit this morning and just laughed! Of course Friday has to be animal print day!! It's pink leopard print and with Elle's hair in her bow - she looks just like Pebbles from The Flintstones!!
3 comments:
So cute!
what great updates on hearing and cuteness! seriously, that girl should star in a special edition of "baby flinstones."
she is SO cute...so happy to read the good updates!
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