Very interesting!!! We went to a Parent Panel tonight at CHOP. The discussion was Cochlear Implants. There were about 5 families - well the parents - sharing each of thier child's story of their hearing loss, implant surgery/recovery, and how they are managing now. We were able to write down questions to ask and they answered them.
It was very cool. A few things that stuck out for me: One - a two year old with a profound hearing loss at birth, who just had her second implant activated yesterday. She was climbing on a bookshelf that for obvious reasons her mother forbid and Mom was yelling, "NO, NO, NO!!" Her daugher, without missing a beat, and without turning around, signed back, "YES, YES, YES!!" She heard Mom! No signing, no speechreading, no visual cues....just heard her. Tell me that isn't a miracle of sorts. The second was a boy - just over a year - having one implant was playing in the family room on the floor. Several feet away, Dad was sitting in a chair reading and his stomach growled. The boy went over an poined to Dad's stomach. He heard a stomach growl.... These are deaf children hearing things in their environment.
Tuesday, April 1, 2008
March 10
Today we have an opthamologist appointment. This is part of the workup for a child with a hearing loss, specifically in Mikaela's range. They are screening for any potential syndromes of which deafness is one of the symptoms.
She has a slight astigmatism - no surprise there - but her vision is fine right now. She will have to be checked annually as Usher's syndrome may present later in life.
She has a slight astigmatism - no surprise there - but her vision is fine right now. She will have to be checked annually as Usher's syndrome may present later in life.
March 8
Well, today is my 39th birthday! Not why I am posting....Mikaela threw up today. Maybe it's a reaction to the formula. We were using Enfamil (yellow container) and I am going to try Good Start. It has those "comfort proteins"....maybe that will help. Ugh...my nerves!
Feb 21 - Dr. Jay visit
This was her four month well visit. Received two vaccines - mainly because I wouldn't let him give her FOUR! I chose to split them up and come back in 30 days for the other two.
She only weighs a touch over 12 pounds. She isn't gaining as much weight as the doc would like to see, so he said I need to supplement. Nurse her first, then give her an ounce or two of formula to promote a bit more weight. Well, that's not happenin'! I am NOT feeding her twice! I'll just begin to wean and switch her over to formula. I am greatful that I was able to nurse for as long as I have.
She is a bit behind in her gross motor development. Doc said her head rocking is okay neurologically. I can't wait to meet with Early Intervention to see what the scoop is!
She only weighs a touch over 12 pounds. She isn't gaining as much weight as the doc would like to see, so he said I need to supplement. Nurse her first, then give her an ounce or two of formula to promote a bit more weight. Well, that's not happenin'! I am NOT feeding her twice! I'll just begin to wean and switch her over to formula. I am greatful that I was able to nurse for as long as I have.
She is a bit behind in her gross motor development. Doc said her head rocking is okay neurologically. I can't wait to meet with Early Intervention to see what the scoop is!
February 20 - Her fitting
Erin tested Mikaela's hearing again prior to fitting her hearing aids to make certain that the first ABR was correct. Her right ear was about 5 dB better than the first one which originally showed no definitive response. This was only at the lowest frequency. Still considered a profound loss in that ear. The left was consistent and remained in the severe loss range.For the first ear molds (as you can see by the picture) we opted for clear molds. Her hair is so long at 4 months that it covers the aid itself and you can barely notice she has aids. In the future, we are going to choose colorful ear molds. Hey, if you have to wear them, you may as well have fun with them. I will let Juliana choose the color after the Baptism. Can you guess what she will choose??? For those of you who know her.....PINK! Due to the rate at which babies grow, we can expect to get new molds about once a month for a while, then it may slow down as her growth rates slows down.
So, Erin puts them in and turns them on for the first time. It was interesting to see Mikaela's response! She furrowed her brow ever so slightly as if to say, "What is that?" Her smile disappeared and a look of complete concentration swept over her face. Maybe she was in wonderment of what she was now experiencing. I will be posting a video here at some point when I figure out how to do that. :-)
Immediately following the fitting appointment, we headed over to Rebecca, her Speech and Language Pathologist. She is a certified AV therapist and at this time, this is the communication approach we think we want to pursue with Mikaela. Of course it will depends on the success she has with the hearing aids and subsequent cochlear implant - if that is the way this goes. There are a few different communication approaches which range from sign language to a blend of oral and sign to completely verbal without the use of any signs. The latter being AV which stands for Auditory Verbal.
Rebecca walked us through several things to help teach Mikaela how to listen and hopefully make sense of the sound now coming in. Some examples are clacking a loud toy out of her vision range to see if she reacts thus letting us know she heard it. A "reaction" may be that she stops sucking on the bink, pauses, blinks, and ultimately turns to see what it is. We will also play the "Ahhhh, Boo" game with a toy. Practice the Ling sounds. The list goes on and on. (Oh, if you aren't sure what I mean by Ling sounds, it is a list of five sounds that make up pretty much the majority of the sounds/pitches we use in the English language. Google it if you are curious! :-)
Due to her age and the progress expected, we don't have to come back for three months. If she was at a point where she was rapidly aquiring speech, we would have more frequent therapy sessions. I suppose we'll get back to this in May!
February 19 - ENT visit
We are scheduled to visit the ENT (Ear Nose and Throat) doctor. Erin recommended Dr. Ken Kazahaya since he most likely would be doing the Cochlear Implant surgery - should Mikaela be a candidate. I wasn't sure what to expect from this visit. Not sure of the purpose.
He did looked in her ears, removed lots of wax and wrote a bunch of prescriptions. The prescriptions were for further tests. When a baby is born with a hearing loss, they test for other things - syndromes - that can occur. She has to have an MRI, her eyes checked, a urinalysis and genetic testing. In my opinion, this was like going to your general practitioner to get the referrals for the other tests/doctors.
He seems like a really great guy! I have heard good things about his surgical abilities. He even likes horses - and has one (maybe more). :-) I am not sure when we go back to him again, but I will call once we have all the tests complete to ask results.
He did looked in her ears, removed lots of wax and wrote a bunch of prescriptions. The prescriptions were for further tests. When a baby is born with a hearing loss, they test for other things - syndromes - that can occur. She has to have an MRI, her eyes checked, a urinalysis and genetic testing. In my opinion, this was like going to your general practitioner to get the referrals for the other tests/doctors.
He seems like a really great guy! I have heard good things about his surgical abilities. He even likes horses - and has one (maybe more). :-) I am not sure when we go back to him again, but I will call once we have all the tests complete to ask results.
January 31
The morning of January 31st, Mikaela woke up kind of gagging at 5:30 a.m. I went in to get her to feed her and she spit up what looked like bile to me. Yellowish, brown. I thought, "whoa...that's not good." Maybe it was her vitamins. But then she was sluggish to wake. Actually she didn't wake up. She was lethargic to say the least. I think I waited until 6 a.m. or so and I called my mom - she's the only one I know up that early. Mikaela threw up two more times. Same color but a very small amount...like a tablespoon or so. I just held her and waited until Dr. Jay' office opened at 8:30. I got an appointment for a sick visit for 9:15. We arrived and upon checking in, Mikaela threw up again. Dr. Jay did a brief examination and turned to me and said, "Okay, I am going to send you back over to CHOP. When the vomit is this color, we have to check for a possible obstruction in the bowel." I was like, "no way!! - You've got to be kidding me!" Dr. Jay is so great!! In his calm demeanor yet telling me to get over there in a hurry, he said, "I'm going to call ahead to let them know you are coming. When can I tell them you'll arrive? In a half hour?" I said, "make it an hour or so. I have to go home, arrange for someone to take Juliana, get Kurt and head over."
I called my mom on the way home and she didn't answer...UGH! Why doesn't she have a cell phone. Where did she go?
So we packed up toys and the DVD player for Juliana to make a day of it at the hospital! As we were pulling out of our neighborhood, my mom was pulling in. Thank God we passed at that moment! If we had left a minute sooner, we would have completely missed her as we go out a different way towards 295! We turned around and dropped Juliana off with all the toys for Nan to hang with her at our house! THANK YOU, NAN!
On the way over, I called my usual prayer chain to let them know to get the prayers going - once again - for Mikaela! This stinks because we were supposed to be having a party for Mom W's 79th birthday at our home this weekend! I had the menu for Tarentella's to place the catering order in my bag!
We arrive at CHOP and I am calm, but just want to get into a triage room. Hanging in the main ER waiting area was getting me agitated. I think it was a mix of the germs and just wanting to know that she was going to be looked at soon. They really did get us back relatively quickly. I would say within a half hour or less, we were in one of the rooms. The good thing about rooms in the ER, you can use the land line phones. :-)
So once again, we tell our story to a half of dozen doctors/interns/nurses. Once again everyone was really, really great! The plan of action this time includes CT scan of her abdomen then possibly a upper GI where she would have to drink that barium stuff. If they find a blockage, they will do surgery to fix it. Of course the hours pass as we wait to have the CT. They took her over and Kurt and I both went in with her. That appeared good. It looked as if there was air all the way through her intestines. Now for the next test. Again, time passes and then we get over to that department. This one, the nurse is moving Mikaela all around as the machine takes x-ray after x-ray. Mikaela only has to drink a few swallows of the barium and I can see it all balling up. There's the blockage...I see it on the screen. The doctor tells the nurse to roll Mikaela left, then right, then left, then right again. I guess they were making sure that the barium was really not going to make it down any further to confirm the blockage and to get enough pictures for the surgeon.
So the surgery team tells us that what she has is called Malrotation. Low and behold, when a baby is in eutero, her intestines come out of her body into the umbilical cord for other organs to develop. Around week 10 the intestines turn around and go back into her body. If they do not go back in correctly, it is called Malrotation. Malrotation in and of itself is not the problem. The problem lies in the intestines twist upon themselves. This is called volvulus. It almost always has to be corrected by surgery.
Now I had to make calls to Dad and Chris again to see if they could head down and pick up Juliana and keep her for a few days. Who knew how long we would be the hospital post surgery? Thank God, Chris is able to miss work. I am really lucky to have family and a tremendous hospital so close! I don't know what people do who live far from their support network!
So, Dr. Nance was going to finish the surgery he had scheduled already and Mikaela would be after that patient. Her case was not so life threatening that a couple hours would not increase any risk. Here we go again with the whole IV thing! This time was much better because CHOP has better equipment for infants and children than Voorhees has. Not to mention they are used to finding those tiny little veins.
The surgery, called a Ladd procedure, was complete in about a half hour. It seemed like and incredibly long half hour, but all went well! Again, THANK YOU, GOD!! Dr. Nance told us the tube that attaches the stomach to the small intestine is usually shaped like a "C". Mikaela's was shaped like a corkscrew. The blood supply was good, the rest of the intestines were all good and she should be just fine! Her small intestines now lie on the right side of her body and her colon on the left. They also take out the appendix during this procedure because it would be in the wrong place when they put everything back in. Therefor making an appendicitis very hard to diagnose.
After surgery, Mikaela had an NG tube in to drain the contents of her stomach and depress any gas from the surgery. She was out of it for a good 12 hours. However, everything was draining well. At one point, they were going to take the tube out but by the time they came back to do so, more was coming out so I asked them to leave it in a bit longer. She was still groggy and didn't know the difference.
All of the staff was wonderful. I really like all of the nurses over there! The bummer is that some recognized us from our last visit! Not really the place where you want 'everyone to know your name'. I'd much prefer to be recognized at my local pub!
The 'big wait' now was for her to move her bowels. Once she could do that, I could start feeding her again. First we had some toots! It was so funny...one of her nurses said, "My, oh my! You are tooting like a Frat Boy!!" I love a little levity in tough situations! I must say, I think she did end up moving her bowels in less than 24 hours after surgery. Everyone was surprised and thrilled. That can often take up to 2 or 3 days.
She was coming along quite nicely! She was pleasant like her usual self in a very short time. What a doll baby! She is such an angel! Always smiling even through all this junk!
Now she could start to eat! We started out slowly. Just two ounces per feeding. We kept that up for three feedings or so and then we increased to her regular amount! We couldn't have been more pleased with the outcome. We were even hoping this would help the acid reflux.
Mikaela was discharged on Sunday, Feb. 4th and we were home in time for the SuperBowl!
I called my mom on the way home and she didn't answer...UGH! Why doesn't she have a cell phone. Where did she go?
So we packed up toys and the DVD player for Juliana to make a day of it at the hospital! As we were pulling out of our neighborhood, my mom was pulling in. Thank God we passed at that moment! If we had left a minute sooner, we would have completely missed her as we go out a different way towards 295! We turned around and dropped Juliana off with all the toys for Nan to hang with her at our house! THANK YOU, NAN!
On the way over, I called my usual prayer chain to let them know to get the prayers going - once again - for Mikaela! This stinks because we were supposed to be having a party for Mom W's 79th birthday at our home this weekend! I had the menu for Tarentella's to place the catering order in my bag!
We arrive at CHOP and I am calm, but just want to get into a triage room. Hanging in the main ER waiting area was getting me agitated. I think it was a mix of the germs and just wanting to know that she was going to be looked at soon. They really did get us back relatively quickly. I would say within a half hour or less, we were in one of the rooms. The good thing about rooms in the ER, you can use the land line phones. :-)
So once again, we tell our story to a half of dozen doctors/interns/nurses. Once again everyone was really, really great! The plan of action this time includes CT scan of her abdomen then possibly a upper GI where she would have to drink that barium stuff. If they find a blockage, they will do surgery to fix it. Of course the hours pass as we wait to have the CT. They took her over and Kurt and I both went in with her. That appeared good. It looked as if there was air all the way through her intestines. Now for the next test. Again, time passes and then we get over to that department. This one, the nurse is moving Mikaela all around as the machine takes x-ray after x-ray. Mikaela only has to drink a few swallows of the barium and I can see it all balling up. There's the blockage...I see it on the screen. The doctor tells the nurse to roll Mikaela left, then right, then left, then right again. I guess they were making sure that the barium was really not going to make it down any further to confirm the blockage and to get enough pictures for the surgeon.
So the surgery team tells us that what she has is called Malrotation. Low and behold, when a baby is in eutero, her intestines come out of her body into the umbilical cord for other organs to develop. Around week 10 the intestines turn around and go back into her body. If they do not go back in correctly, it is called Malrotation. Malrotation in and of itself is not the problem. The problem lies in the intestines twist upon themselves. This is called volvulus. It almost always has to be corrected by surgery.
Now I had to make calls to Dad and Chris again to see if they could head down and pick up Juliana and keep her for a few days. Who knew how long we would be the hospital post surgery? Thank God, Chris is able to miss work. I am really lucky to have family and a tremendous hospital so close! I don't know what people do who live far from their support network!
So, Dr. Nance was going to finish the surgery he had scheduled already and Mikaela would be after that patient. Her case was not so life threatening that a couple hours would not increase any risk. Here we go again with the whole IV thing! This time was much better because CHOP has better equipment for infants and children than Voorhees has. Not to mention they are used to finding those tiny little veins.
The surgery, called a Ladd procedure, was complete in about a half hour. It seemed like and incredibly long half hour, but all went well! Again, THANK YOU, GOD!! Dr. Nance told us the tube that attaches the stomach to the small intestine is usually shaped like a "C". Mikaela's was shaped like a corkscrew. The blood supply was good, the rest of the intestines were all good and she should be just fine! Her small intestines now lie on the right side of her body and her colon on the left. They also take out the appendix during this procedure because it would be in the wrong place when they put everything back in. Therefor making an appendicitis very hard to diagnose.
After surgery, Mikaela had an NG tube in to drain the contents of her stomach and depress any gas from the surgery. She was out of it for a good 12 hours. However, everything was draining well. At one point, they were going to take the tube out but by the time they came back to do so, more was coming out so I asked them to leave it in a bit longer. She was still groggy and didn't know the difference.
All of the staff was wonderful. I really like all of the nurses over there! The bummer is that some recognized us from our last visit! Not really the place where you want 'everyone to know your name'. I'd much prefer to be recognized at my local pub!
The 'big wait' now was for her to move her bowels. Once she could do that, I could start feeding her again. First we had some toots! It was so funny...one of her nurses said, "My, oh my! You are tooting like a Frat Boy!!" I love a little levity in tough situations! I must say, I think she did end up moving her bowels in less than 24 hours after surgery. Everyone was surprised and thrilled. That can often take up to 2 or 3 days.
She was coming along quite nicely! She was pleasant like her usual self in a very short time. What a doll baby! She is such an angel! Always smiling even through all this junk!
Now she could start to eat! We started out slowly. Just two ounces per feeding. We kept that up for three feedings or so and then we increased to her regular amount! We couldn't have been more pleased with the outcome. We were even hoping this would help the acid reflux.
Mikaela was discharged on Sunday, Feb. 4th and we were home in time for the SuperBowl!
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