Tuesday, January 20, 2009

"So she can hear now, right?"

Well, technically "yes". But not like you might think.

Several are wondering what is happening with Mikaela's hearing now that she had the CI surgery and is 'activated'. I hope to shed a bit of light for you.

First of all, she can only hear out of one ear. Her left ear has nothing providing any sound at all. It is called a unilateral hearing loss. Second, she is at the very beginning stages of hearing/listening. It is called 'detection'. She is beginning to detect that there are sounds around her. But at this point, she doesn't know if the sound is coming from me, the doorbell, the microwave, the dog or anything else for that matter. Our early goals are just to introduce her to lots of sounds and point them out for her. For example, one game we play is I put the house phone on the table next to the side with her implant as she sits in her high chair. I call the house phone from my cellphone. I point to my ear and say, "OH, I hear that!.....Do you hear that?....It is the phone!" Then I pretend to answer say, "Hello, I love you...Bye!" and hang up. Through time and repetition, she will begin to recognize that sound and know the source. Same thing with the microwave, doorbell, dog barking, water in the sink, rolling her highchair, everything!

Remember, hearing babies hear in the womb. Then spend the first 4 months just listening to their environment and then begin to babble and play with their own mouths to understand sounds and beginnings of speech. Mikaela didn't hear in the womb. She only gets the opportunity to listen to her environment when she is awake and wearing her processor. (There is a slight battle about keeping it on her.) It will take time...months....before she recongizes and consistently responds to sounds. She has only been activated for 29 days and the first week of that she didn't even have it turned up loud enough to hear speech. Then she lost a good 4 days in the hospital with her bowel surgery.

It is working. She is hearing. We just can't 'see' it yet. As always, feel free to email or call me with any questions. I am happy to share! I am thankful for your interest! Blessings to you all!

Monday, January 12, 2009

We've been home!

Sorry I haven't posted! We got home from CHOP 1/7/09 around 7 p.m. That first night was bliss! No nurses barging in every hour to check something! In the morning, she was a little tender since the pain meds wore off. I set my alarm to keep her getting Motrin and Tylenol on their respective cycles the next night.

However, the morning of 1/9 - at 2:15 a.m. -I awoke to the all-too-familiar sound of Mikaela puking!! UGH. I was frantic! Kurt held her in the bathroom waiting for her to empty her belly like usual and I was packing a bag to head back over to CHOP. First I called the surgery clinic and the dr. on call told me to wait it out for the next 4 hours. She said to give her clear liquids slowly beginning one hour after she last threw up and see if she is able to keep it down. By this time, I went back in the bathroom and she was laughing and playing peekaboo with Daddy! This is a good sign! So the bags were by the door and I sent Kurt to bed. I began giving her Pedialyte at 4 a.m. and she drank 2 ounces by 5 a.m. I put her back to bed at 5:30 a.m. Hmmm....what was that about??? Could the Motrin have been too hard on her belly? I gave it to her last at 8 p.m. and she had drank a bottle just a half hour prior. Who knows? I'm sticking to Tylenol alone from now on. So far - so good!

This past weekend we just hung home. Her appetite is finally picking back up yesterday and today. I am relieved!! Juliana's pneumonia is gone and so is the ear infection. We are all healthy around here! And to top it off - GO E-A-G-L-E-S!!! How fun???!

Monday, January 5, 2009

Whirlwind

Okay...where to begin. First of all, I shouldn't even be posting, I should be in bed. But I am afraid that I won't have time to do it in the morning before I have to run out.

So...Christmas was not our best. Mikaela woke up from her nap with a fever of 104.8 degrees. Not making it to Aunt Kim's for dinner that's for sure! We did the luke-warm bath thing and then alternated Motrin and Tylenol and it gradually came down and continued to do so each day after. She really ended up with just a cold. Mostly nasal congestion but that is clearing nicely.

Then, Juliana caught the cold right before New Year's Eve. We did still go to Mikaela's mapping, and explained that she didn't wear the processor as much as we would have preferred because she was so cranky from being sick, she kept ripping it off. Not a big deal, as the new programs were set to accommodate that yet still ramp up to get her hearing speech. Thrilling!

By New Year's day, Juliana was coughing her head off! I took her to the pediatrician on the 2nd and sure enough, she has pneumonia!! Who knew???? I was not expecting that!

So we head home and Mikaela eats lunch at noon. I tried a new food for her...Pasta Vegetable Medley. (Still stage 2 because of all of her GI issues.) Only gave her two ounces mixed with oatmeal baby cereal and her Alimentum. She went to bed around 12:45 or so. By 2 p.m. she was up and not feeling herself. Kinda whimpering and cranky. Kept pulling her legs up. I thought, "Oh, no! She's having a bad reaction to the new food! Why did I give it to her???" I called the pediatrician, and she gave me some suggestions that worked initially. That however was short lived. By 6 p.m. she began the puking episodes. I was beating myself up for giving her that food!

She continued to puke through the night. We went to bed around 1:30 a.m. and thought the worst was behind us...Not so! At around 3:30, she woke up and threw up again...(I was wondering what she could have left in her poor little belly.) I turned on the light and realized that it was that crazy green color like when she had the bowel obstruction at 3 months. No. This isn't happening! She fell back to sleep in about 1/2 hour. So did we. We then got up with her around 7 and she threw up again. It wasn't as bright a green, so I thought maybe there was an obstruction and it 'unkinked' itself. (I think this can happen.) So we called the ped and she told us to try different things to settle her stomach with the hopes of her not getting dehydrated. To little avail. I thought we were getting somewhere when she kept down ginger ale for about 2 hours. She wanted to eat or drink so badly. If she saw a sippy cup or bottle on the table, she about sprung out of our arms to get to it. So, I got a little cocky and gave her some formula. Well, BIG mistake. That started coming up around 3 and didn't stop. By 3:45 Kurt had decided enough was enough and we had to head to CHOP. He was worried about dehydration and another sleepless night. We just wanted her to get some relief and us all to get back to normal.

Rather than try to find care for Juliana, I suggested we divide and conquer. After all, she was fighting pneumonia and who would want that responsibility?? I was volunteered to be the one to take the baby to the hospital. Besides....when they are sick they really do only want their mommy. I regretfully agreed and said, "well you hold her...I have to shower first!"

By 4:30 I was leaving to head over. I had thoughtfully covered Mikaela in the car seat with a towel, one of the chucks I stole from our last visit to the hospital and a bib to catch any potential vomit during our drive. She thew up as we passed the Bellmawr exit. Uh...no where to pull over on 295, so onward over the Walt Whitman. University Ave is really not far down, so we're almost there. I pull in at 5:02 and head to check in. She threw up again! Now I began to cry a little. This was too much with only 3 hours sleep and now everything was all wet, stinky and I felt so bad for my baby!

I finally get a 'room' in the ER portion at 6 pm. The 5 billion questions began. Most of this stuff is in her enormous file they have anyway, but we have to do it all again. They took an x-ray of her abdomen area. A short while later they came back and said they had to take her for an ultrasound of her belly to see if they could see more or better or whatever. Then that wasn't good either because of some gas on her left side. They asked if they could put the NG tube in and insert dye to be x-rayed again in the hopes of showing or confirming clear bowels. Sure. Put it in and get it done if that's gonna help her get better. By this time it's 9 p.m. and I'm starving. The nurse said she would go and stay with her the whole time because I had already ordered food to be delivered. My food came at 10 and she was back by 10:15. By 11 p.m. the resident came in and said that she did great for the x-ray and that someone from surgery would be down to talk to me. WHAT?? Surgery? Why do I need to talk to them? I thought we were here to just get some fluids, maybe a little something for the nausea and be on our way back home. The surgery people were there in two minutes and said that she may have a small obstruction and lots of times these things fix themselves. (See....I thought so!) They were going to admit us and then have the General Surgeon make the call in the morning.

I didn't get up to the surgery floor until 2 a.m. I have to tell you ...I was beyond by that point! There's really a whole sub-story here, but I'll save that for another time. I questioned this delay last night and one of the nurses pretty much confirmed that someone forgot about me for 3 hours.... You have to be joking! (I will be writing a letter to someone in the hopes this never happens to anyone again.)

So, the surgeon comes in at 6:30 or 7:00 a.m. - something ridiculous like that since I only went to bed 4 hours earlier and only got a scattered 3 hours the night before. He wants another scan done to see if the barium has moved into her colon and the blockage had corrected itself. That happened at 8:05. (I knew it would be a while to hear back because he had a scheduled surgery at 8) He came back to me around 9:30ish and told me he had to go back in. I was bummed, yet relieved that we did choose to go to CHOP for "fluids" and at least she would be getting some relief.

I am going to sum up at this point because I must sleep. I have to head back over there in the morning. Kurt was kind enough to sleep there tonight and let me sleep in my own bed.

She did great, the surgery was a success. There was an adhesion, aka scar tissue, from her last bowel surgery and the intestine just kinda flipped around the scar tissue and twisted a loop that closed off anything from moving through. They went in through the same incision and it didn't have to be any bigger. She was on morphine for the first 24 hours, but now she is on something non-narcotic to hopefully urge everything internally to wake up and get moving again. With these types of surgeries, they keep you in there until lots of things begin to happen. First she must begin to pass gas and move her bowels. Then we will feed her the clear liquid diet and measure output for a while. Then I think they'll want me to try food and see how that goes through. I can't imagine I'll be home until Friday or so. Good thing I didn't have too many plans this week!! :-)

Thanks for reading all the way to the end! Oh, yeah....Happy New Year to you. May this be the only bump in our 2009.