January 16 - ABR

The big day! Today's appointment was scheduled for 10:30 a.m. Again, Mikaela is supposed to be asleep through the entire two hour test. With nursing her, that's about all I get! Plus it takes so long to get her burps out with the acid reflux and all.... How was I to feed her, burp her, drive to Philly and keep her asleep for two hours?

I had a plan! If we arrive at CHOP by 9 or 9:15, I could nurse, burp and get her back to sleep for 10:30 - hopefully!! Then she would be full enough to sleep for the two hour test. My mom was coming by 8:00 so we could leave by 8:15 and my plan would be a success. Kurt, however, had his own plan. We ended up leaving here after 9 a.m. and Mikaela ended up falling asleep on the ride over. Her feeding schedule was all off....oh, well! We just had to go with it. (Of course I was really not thrilled at the time.)

We arrive at about 10 and Erin, our audiologist, takes us right in. We start the test immediately since she was already sleeping. They hooked her up to the same test that the hospital has. After a few short minutes, Erin suggested hooking her up to the ABR machine since she wasn't getting response from the other. Well, at that moment, by having the need for the other test, she confirmed we definitely had some degree of hearing loss.

The electrodes had to be changed and miraculously, Mikaela stayed asleep! I knew she must be getting hungry. How much longer did we have? The other machine was had tubes in her ears and a computer screen where Erin would change the pitch and volume while Mikaela's brain waves showed on the monitor. After a while, Mikaela did start to move while she was sleeping, so I took that to mean she must be hearing something....That the noise must be disturbing her sleep. Erin said that, yes, she was getting some responses. Oh, good! We asked her what exactly she was looking for, and she showed us a peak and a dip in the waves. That indicates the brain responded to the tones.

So the test wrapped up and Erin says, "Your daughter's hearing loss is in the Severe range." I didn't hear - or just can't really remember - too much of what she said after that. I didn't really know what that exactly meant either - I just knew that "severe" is never good. It was a blow to the gut! I was not prepared and quite shaken.

Kurt had said some time earlier that he was expecting the worst and was okay with that. He tends to prepare himself that way and if it's not as bad as expected, he is pleasantly surprised. I tend to expect the best and when it doesn't happen, it takes me a minute to adjust.

We then tested her Otoacoustic Emissions (Oae) which measures the sound coming back out of the ear and it revealed: Absent OAEs at all frequency regions tested. Then the Tympanometry which measures the function of the ear drum. This can be an indicator of fluid and/or wax build up as well. Right ear: Consistent with normal middle ear status. Left ear: Consistent with low middle ear compliance. Results should be interpreted with caution due to Mikaela's movement during testing. I found this to be particularly peculiar since she has more hearing in her left ear than her right ear. However, the ear drum seems to function correctly in the right and not in the left. (I later learned why this could be so.)

By the end of the appointment, we understood better what Severe hearing loss "looks like". We were shown a graph that indicates the "speech banana" and other sounds by their decibel and pitch. It shows what Mikaela can hear with a 70 decibel loss in her left ear and a 90 decibel loss in her right ear. Here is a link to the site that has it:

http://edschool.csuhayward.edu/departments/ted/instruction/howe/5500/AAL-speechbanana.html

If it doesn't come up for you, just google "speech banana" and you will see what I mean.

As we concluded that appointment, I was anxious to call family and let them know. Everyone has been praying so hard! As I made my calls, I said, "We are taking a different path with Mikaela. She has Severe/Profound hearing loss and things will be different than expected." Hence the name of the blog - Mikaela's Path.

December 2007- and our first visit to CHOP

Okay, it's December and Christmas shopping - or any type of shopping for that matter - is not my forte! New baby, cold weather, let's point and click this Holiday season! :-) Everyone will understand!

So on the night of December 5th, I was nursing Mikaela and Kurt went out to get a pizza. All of a sudden she just started vomiting. While nursing! I ran from the couch into the kitchen and held my 5 week old over the sink as she emptied her stomach. I was in shock. I couldn't imagine what was going on. I took her upstairs to bathe her. After the bath as I was getting her dressed it appeared like she had a seizure. Her arms were held out stiff, her head cocked to one side and her eyes were darting around, not in the same direction at the same time, either. I called her name and rubbed her cheek and she seemed to come out of it. I wrapped her up and came downstairs. She looked so pale. There was no color in her lips, and she was a bit clammy.

I called Dr. Jay and let him know she was vomiting and very pale. He asked me about her temperature, suggested we get Pedialyte to keep her hydrated. I didn't tell him at that point about the seizure, because I wasn't sure what happened. Did I imagine it? Or was I making more out of it?

Kurt came in with the pizza. He saw how pale she was and said, "Let's take her to the hospital now." (He didn't even know about the "episode" I thought may have been a seizure.) He equated her condition to that of ET when he was all white and ready to pass away. I had absolutely no appetite, but knew it potentially could be a long night as we may end up in the hospital. I choked down one slice.

Shortly after dinner, she threw up again. And she did that thing again - I called to Kurt to see what was up and we decided to call Dr. Jay on his cell phone. He said get over to the hospital and have them call him if need be.

We rushed over to Virtua Voorhees. This was about 9 p.m. or so I think. Ugh...I think the first thing they did was get an IV in her. Not after sticking her a few times in an effort to find a vein in her tiny hands and feet. The nurses were very nice. The doctor was very concerned and thorough in questioning the events and time line of the evening. They let us know it would be best to run some tests and keep her over night for observation. However, they didn't have any beds available and suggested we head over to Children's Hospital. Not a problem, because we were planning to take her to CHOP anyway!! We had already decided that before they let us know they didn't have any room at the inn. Virtua arranged for transport. I rode in the ambulance with Mikaela and Kurt followed in the van. At this time, Justin was home with Juliana and they both were sleeping. I'd say this was maybe close to 11 p.m. or so.

We arrived to the ER and repeated the story to it seemed like another half of dozen people. It was probably close to 5 a.m. before they got us into a room. I called my mom explained where we were and she went over to stay with Juliana as Justin left for school at 7:10. It was the morning of our 10 year anniversary. Sure, some guys take their wives to a fancy restaurant....

The next few days, Mikaela was put through so many tests to find out what was happening. Lots of blood drawn, a CT scan, EEG, a spinal tap to test for herpes, meningitis and something else. I can't remember. It was hard to see her go through all the poking and prodding even though we knew it was all in an effort to make her better.

We were running on so little sleep I was finding it hard to keep up. I slept by her crib, awakened by her various alarms going off every few minutes, (okay maybe a slight exaggeration, but not by far. Then the IV alarm would go off when the meds finished going in. Nursing her without pulling on all the wires was a bit of a circus!

Thankfully Neurology cleared her the first day. They said all of the results were within "normal" range. They believed that whatever her episodes were - they were not seizures.

We asked to have her hearing test moved up from Monday to Friday - since we were in there anyway. They were able to get us an appointment! However, on Thursday morning, Mikaela woke up and her left ear was extremely swollen and leaking a clear fluid. What the heck??? Not one doctor could explain what was happening. There wasn't an apparent infection. They said it wasn't red inside or anything. So with that new development, we were going to pass on having the ABR done. We didn't want a false result due to a potential ear infection or whatever it was. Oddly enough, by the afternoon, her ear returned to normal and no fluid was leaking. We treated it like an infection anyway with some drops.

The days passed as we waited for results from the rest of the testing. They all came back negative! What a blessing. The doctors deemed it ACID REFLUX! The burning of the acid caused her to flail about in such a dramatic fashion. Could have even caused the vomitting. I was relieved for that diagnosis yet felt badly for having to put her through all that. Well better safe than sorry.

We came home that weekend and happy to have her on the road to recovery.

Christmas was wonderful! We did decide to hang close to home because of all of the commotion. Family stopped in to visit us! We truly appreciated it! Here is a picture or two!

November 2007

This month was pretty typical for the first month of an infant's life. Mikaela was getting days and nights mixed up, having some burping and spit up issues, but otherwise all seemed to be going very well.

We spent Thanksgiving with Mom-Mom and Pop-Pop Giuliante at their house. It was great! Of course it is always a challenge traveling with an infant - even if it is only 50 minutes away!

More spit up...in fact almost every time I laid her flat, (like changing her diaper) she would spit up. I couldn't do that nurse while laying on your side thing - threw up all in the bed! Changing sheets at 3 in the morning doesn't make for a happy mommy or daddy.

Kurt slept a lot in Juliana's room - just an attempt at getting enough sleep to function and go to work. I am certain every other new daddy goes through pretty much the same detail.

As we awaited our hearing screening scheduled for December 10th, we just were doing all the things parents and siblings do with a new member of the family. Pacing the floor all hours of the night, rocking her, laughing with her and loving her!

This hearing test was called an ABR which stands for Auditory Brainstem Response. The test was to last two hours and Mikaela was to be asleep for the entire thing! We live about 45 minutes from Children's Hospital of Philadelphia (CHOP) with traffic so how was I going to make this work?? My plan was to arrive at the hospital an hour before the test, nurse Mikaela then and she should fall asleep and stay asleep for the entire test....let's see if we could make this work!

Getting Caught Up

Okay...it is driving me mad that I am only up to Halloween in Mikaela's life and SOOOO much more has happened. My plan is to give short posts to bring us up to date - pretty much - then go back and fill in lots of detail as time permits.

I think this way, my posting dates can finally correspond to life...if not, it could be a long time until I am caught up....so hang on for the ride...here we go!

Halloween

Our first full day home was Halloween. Juliana was Belle - and a beautiful one! Mikaela was a Tootsie Roll.

The doorbell rang, the dog barked, Mikaela slept.

Hearing Screening(s)

In the hospital, they do a hearing screening on newborns. Mikaela "referred" the first day. She didn't have the required number of responses to the sounds. In other words, she failed the test. How are they tested??? Well, electrodes are hooked up to her head to monitor brain activity and tones are played through earphones. The nurse who administered the test told me they play about 1500 clicks and the baby is required to respond to 150 in order not to "refer". Mikaela responded to about 50 - or so it appeared. She then was to be tested the next day. She referred again. At this time, they explained it could be due to fluid in the ear, often the case with C-Section babies. Often they test in a few weeks upon leaving the hospital at an audiologists office and pass - no problem. They also told me that their test only goes up to 30 decibals. They told me her hearing might need to be tested at higher volumes. I didn't know what level normal conversation is at that time, so it sounded "okay".

Then on the third day, when she referred yet again, I began to mourn. To be honest, I cried most of the day. My mom was there with me and I couldn't help but think about the "what ifs". 'How will we all - the extended family included - make the time to learn sign language?' I want her to be able to talk to all the aunts, uncles, cousins, etc....how will that be possible??? 'What if she is running to the street and she can't hear me call her name?' 'How can I keep her safe without smothering her?' As parents we just want life to be easy for our children. 'What was to lie ahead for Mikaela?' 'We don't have any experience with the deaf community.' I guess I have a lot to learn! These are the thoughts that played on that day. Once I was alone in my room, I just held her and really bawled!! A nurse came in to check on me and was stopped in her tracks when she saw me just sobbing! I looked at her and just said, "What if my baby can't hear?" She didn't know what to do with me. :-) She stammered and tried to tell me everything would be okay.

During this emotional turmoil on day three, I knew it was only temporary. I knew I was postpartum. I knew I needed to let the emotion out so I could be logical in the days to come. I know myself. I had to go through this purging or catharsis in order to let it go and move on to the next step. My eyes were so puffy. That night when Kurt came to visit us, I was just spent.

Well, the next day, October 30th, we were to be going home. This would be the last time they would do the hearing screening in the hospital. She referred. I wasn't even upset. I figured, "Well, we'll just make an appointment with an audiologist and get the real deal." I was hoping and banking that it was just fluid and would correct itself in time. Let's just enjoy this little bundle!

Looking back, it should have been so obvious. Her "bassinet" in which she was wheeled from the nursery to my room had such a squeaky diaper drawer. It would have had to have been cottage cheese - not just fluid - in her ears not to jump when we opened it. But she never jumped. Not once. She never woke or startled as people would come in and out to visit. I just thought...oh, she's a C-Section, she doesn't even know she's born yet. Justin was similar. He didn't even cry for the first few days of life.

My cousin, Desiree asked me what my "mommy senses" were telling me. I truly thought she had some hearing loss. Mild.... Maybe Moderate.... We'll wait and see.