Sunday, September 2, 2007

Taking Advantage of Sleep to Talk about Sound....or lack thereof

So, both kids are asleep...the husband is at the restaurant, working, and I had someone ask about Nicholas' struggle with deafness. I figured, this is a good time to get a little serious and tell you about the first 15 months of his life.
Let me start here, Nicholas is now 2.5 years old and is no longer deaf. He does still have moments where his words come out slightly different, and by different I mean not sounding like the average 2 year old speech but having a quality to them that is similar to that of a deaf person who has learned to speak. This is has lessened quite a bit over the past few months. I am really the only person who notices it but I'm hypersensitive to it now.
Ok, so Nicholas was born in February of 2005, the DEAD of winter. It was snowing when we went into the hospital and it was snowing while I was in the hospital. The only time it wasn't snowing was when we brought him home! I was induced with Nicholas because my bp had climbed quite steadily and they thought he was 9 pounds....I was about 38.5 weeks. He was born after 13 hours of labor, 2.5 of those were spent pushing!! He was perfect, we were trying nursing but he very quickly developed pretty bad jaundice. He was under the phototherapy lights for a number of days and I went home without him- horrible horrible feeling!! That was just background, so you knew where we were coming from.
We were told by my then pediatrician that Nicholas was not to leave the house for 9 weeks! I only went slightly crazy during that time...HAH! So, within those first weeks he developed his first cold and his first ear infection. It wasn't terrible but enough that he needed to be on antibiotics. And that's where it began. From that point on Nicholas would have an ear infection roughly every 6 to 8 weeks. We tried a few antibiotics two or three times to no avail. NOTHING was making these infections go away permanently. During this time, our pediatrician left the practice we were with so we started seeing a new doctor who I ABSOLUTELY LOVE! Let me tell you, I trust my doctors 100%, that's why I bring my kids to them! They've seen a lot more than I ever have...they've been to a lot more school than I ever will....I TRUST them and their opinions. the old pediatrician leaves, and it is the dead of winter, Nicholas is in daycare at this point...there are many reasons as to why my perfect little son would have all of these infections. The pediatrician wanted to see what the summer would bring in terms of sickness and all since it would be warmer and he would be out of daycare. During this time Nicholas was physically and emotionally/mentally developing normally, if not ahead of schedule. He had TONS of problems with formula, though. We went through 5 formulas before discovering acid reflux and a pretty severe milk protein and lactose allergy- he was on nutramigen and it was a LIFESAVER.
So, things were going well...formula was sorted out, he was growing and developing but was still having allergies. I started to notice little things, he wouldn't startle at loud noises. He NEVER woke up when the phone rang or someone opened the garage with opener (the garage was directly under his room and it was loud!). Things like that but I never thought to mention them to my pediatrician because I thought he was just a sound sleeper and maybe being in daycare had conditioned him to the loud sudden noises. Summer brought ear infections, just not as many and really they did sort of die down....maybe 2 all summer....not too bad! Nicholas started cruising and walking, he really didn't "talk" or babble much and I only realize that now becuase our daughter does it SO MUCH! This is when the indicators for me really started. We tell him No and he wouldn't even turn his head. We would see that he was going to do something dangerous and scream to try and get him to stop in tracks and be "scared" and nothing would response! We would have the TV on and he would cruise up to the stand and put his ears against the speakers at the bottom of the TV and stare up at the screen....the volume was at a pretty good level because I listen to it quite loud due to my own minor hearing loss. These indicators really started in the fall of 2005 just as the infections were picking up again and just as we were getting back into daycare.
We went through the whole winter and at one I asked my pediatrician what she would do because she did offer me a specialist's name and number. She said, knowing my history- I apparently had a ton of ear infections as a baby- that she would wait for her own kids. The first thing she found was that ENTs, Ear Nose and Throat doctors, jump right to surgery and she wanted to do everything she could to prevent that. She felt that if things didn't clear up by his first birthday then we needed to pursue a specialist. I agreed...I talked with my husband about it and my parents and found that the infections ran in the made sense to me.
Nicholas' first birthday came and went. He was speaking MINIMALLY. We maybe got a 'no' or 'dada' out of him, not much else. That was ok too, my dad didn't speak until he was 4. Once he did start speaking it was in complete sentences but, again, it made sense to me. Boys seem to develop a little later as well...I was not overly worried except for the persistent infections and constant medications.
So, we're into mid-March/early April of 2006 and I've made an appointment to see the ENT for many reasons but the main reason was this: we were on our last oral antibiotic. We had exhausted all options and the next step would be shots and I could not do that to my baby. So, we first saw and audiologist who informed us of a profound hearing loss, roughly 80%. It was like Nicholas was under such deep deep water that everything was jumbled and impossible for him to hear and process. HOW HORRIBLE! I didn't know what to think at that point, I didn't know how to feel....I just felt almost kind of empty. My little boy couldn't hear...what would this do to him for the rest of his life?!? The next step was the doctor, same day. I wish I could remember the exact words he said to me but I think the feelings of fear and sadness for Nicholas just took over. It was VERY overwhelming! The basic gist of the meeting was that it was bad. It looked like a tubal defect in both ears. BUT it also looked like it was totally fixable. The tubal defect was preventing the ears from draining at all and the sitting fluid was causing all of the infections. They would never go away until the fluid was drained and the defect corrected. OK...what do we do and how quickly can we do it?!?
We came back for one more visit and heard all of the risks, etc. and then were scheduled for a May 4th surgery date. May 4th rolled around and my husband, my mom, Nicholas and I went to the ambulatory center at Morristown Memorial Hospital and got ready for his surgery. He hadn't eaten or drank anything in more than 12 hours and I felt terrible because I knew all he wanted was his sippy cup! Poor Kid!
Pat and I were able to both bring him back into the prep area but only one of us could bring him into the operating room. The nurses and the doctor tell you flat out it should be the one of you who is stronger, who won't freak out when you see your child immediately pass out, etc. Well, Pat looks at me and what do you think he does?!?!? "Ali, that's definitely you. I won't be able to take it!" Gee thanks! I'm so happy you consider me so strong! So I get into my too snug jumpsuit and carry my monkey, in his pjs, into the operating room behind the nurse. God, what horrible sight and I've been in many an operating room. This table that my boy is going to be strapped to and I have to put him there, but it's for the best. I have to keep telling myself that. The nurses are wonderful as is the anesthesiologist....everyone clearly understands the heaviness of the moment. Nicholas is placed on the table and it's explained to me that it's better for him to cry because he takes in the anesthesia quickly that way. Ok great, that's exactly what I want....seriously, I want him to scream so that he sleeps faster so that this is over for him faster. What does he do? He lays on the table, smiling, with big wide eyes staring at everyone and everything! Finally, I think he notices that this is totally unique and different and a little scary and we both start to cry. Within 8 minutes he's asleep and I'm ushered out, still crying. Pat is waiting for me and we go back to my mom in the waiting room. I get a cup of coffee for my mother- that gesture is huge in my own health but more on that another time- hand it to her, sit down and wait. I don't have to wait long, the doctor is out within 15 minutes. WOW! He gives us the report, the amount of fluid in each tube was astronomical. He drained the tubes completely, twice just to be sure. He inserted artificial tubes to help keep the real ones open and to help drain any excess fluid. That was that!
Pat and I were brought back to recovery where Nicholas was wheeled to us and he was groggy but asking for Daddy...saying Daddy. We sat there for awhile. Nicholas at Graham Crackers, had some juice and cried in discomfort. Even his cry took on a different tone at this point, it was strange. The four of us went to get something to eat once we were done in recovery and after we had picked up a script for antibiotic drops and Nicholas was incredible at the diner. He was hearing EVERYTHING! You could see his reactions to horns while we were driving, his slight startle to dishes being dropped in the diner, anything and everything. In those moments and in more and more moments over the next few weeks I realized that this surgery really and truly saved him. Within weeks he was speaking words that we didn't even realize he could have picked up, it was wonderful!
We went back for follow ups and the tubes were working great! We go back every 6 months now and the worst thing that has happened is that he had a giant wax buildup in one ear. It was removed and that was that. The tubes are still in, they should fall out by 18 months after the surgery which is this November. If they don't, we do have to discuss removal and I'm nervous that removal will bring on the infections again but he'll be three soon and he knows how to communicate now and he knows how to tell us that he's'll be different and we'll know how to react.
I was sure that Nicholas would have delayed speech and be in therapy for a long time, I just wanted to make sure that it was started ASAP. Nicholas last visit to the pediatrician was an amazing step forward. I brought up the idea of therapy and pediatrician just sort of looked at me. I had explained to her what I felt was slightly underdeveloped speech and she asked Nicholas to say a few words. He did and then he kept speaking. At the end of the appointment, which I believe was his 2 year checkup, my doctor informed me that therapy would not be necessary- Nicholas has this vocabulary of a child who is at least 1.5 years older than him!
It's incredible to me, the journey he has taken and we've just kind of been tagging along for! There are the days where I will jokingly say that I wish he still couldn't speak or where I'm convinced he's still deaf because he certainly doesn't listen to anything I say! But, my children are a miracle- all children are miracles. My doctors were miracles and used their knowledge and skill to make sure that my son lives a life of sounds and music that I was very afraid he wouldn't.


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