Dual Sensory Impairment

Noah is deaf-blind. He does have some vision and a little hearing, but he is impacted in both of these areas enough to make a negative impact on his life. Most people who know Noah would agree that he is deaf, but are surprised to find out about his visual impairment. He doesn't crawl into walls that often, he can tell mommy and daddy apart, and he is able to play with his toys in an appropriate (although developmentally delayed) way. What they don't understand is how well he compensates. Noah can put pieces in a puzzle without looking. Amazing? No. He can't do any better when he is looking. He just learned to do it by touch. Yesterday a special educator came to our OT appointment to make suggestions on how to modify things for Noah's visual impairment. We used lots of electrical tape with one goal in mind - high contrast. What a difference! Noah has been hit or miss with his shape sorter, stacker, etc. He knows what to do but sometimes he misses the mark. We outlined things with electrical tape and now he can see the contrast and is an expert. We're going to be looking for more ways to contrast and start using a light box and we expect to see big changes. Great job, Noah!

What is beauty?

Noah's incision scar is beautiful. Or at least, that's what his doctor said today. I would post a picture, but I'm guessing that most of you don't love surgical scars as much as our CI surgeon. It's really not that bad. I mean, it's not as big or creepy looking as I thought it would be, and it's not oozing anything. But I'm not sure beautiful is the word I would have picked.

A Life Worth Living

In the NICU we were encouraged on more than one occasion to discontinue life support or sign a DNR order. The neos seemed to think that the odds were stacked too high against our little man. Instead of just saying that he was "critically, critically ill" while shaking their heads they gave us grave looks and talked about the likelyhood of our sweet baby being a vegetable, his brain being mush, and the unfulfilling life that we were condemning him to by refusing to give up. You might think that this is upsetting to me. While at the time it was hard to hear, I trusted these people to give me the best, most accurate information they had. They were saying these things because they believed them to be true, not because they had any intense desires to see me disconnect my child from life support, or because they wished the worst for us. Over time, these doctors came to know what I already knew - that Noah was a fighter and he had an awful lot of prayers to get him through the tough times. Instead of saying what would happen to Noah when something bad happened they would say "you'd better get those prayers started up" or "typically in this situation xyz happens, but Noah hasn't been typical yet so lets just wait and see".
When we left the NICU I thought I was done having to defend my belief that my child's life really was worth living. Boy was I wrong! It seems that there is a general debate about how young is too young to save preemies. To my surprise, there are some who believe that a 24 weeker's life is not worth living. Not just wimpy white boy 24 weekers with disabilities and long NICU stays like Noah - all of them. I ran across one of these people a few months ago in the form of a Developmental Pediatrician. We were supposed to see him a few months after we left the NICU, but due to some job turn around in that department we didn't get in until 11 months post discharge. At that point we felt we had a reasonable idea about Noah's development... He's slow in speech and has feeding issues, but he's gradually catching up everywhere else. That is he's still behind in a few areas, but is ahead in others and is less behind than he was at discharge. Not bad for a vegetable who's brain is mush that lives an unfulfilling life, eh? Rather than being amazed at his progress (Noah looks really bad on paper, so most people who actually meet him are pretty impressed), he gave us the same old doom & gloom from NICU days and then as if to comfort me said "You just can't expect much from 24 weekers." Thanks, Doctor. I'll keep that in mind. If you should come across my blog and decide to feel sorry for my son and his issues, I feel sorry for you. Because if all you see are his problems you're missing out on an awful lot. Who knows what else in life you might be missing? Noah's life is worth living. And I'm going to keep saying that for him until he learns to say it himself.

Surgery Update

We're home and everyone is doing well. Things were exhausting and it was frustrating being back in the hospital, but it was overall a good experience. Here is an approximate timeline of the events over the last few days...

Tuesday:

4am - wake Noah and attempt to feed him pedialite (yeah right!)

5am - leave for hospital

6am - arrive at hospital

6:20 am - go back to pre-op room to get ready for surgery

visits from: anesthesiology resident, anesthesiologist, ent resident, ent intern (first year resident), head ent resident, head of audiology department, 2 nurses aids, and the surgical nurse (Notice anybody missing? Oh yeah, the surgeon! We were assured that he was there and that they weren't just letting the ent intern "practice" on Noah)
good news: the new AB Harmony was just released - Noah will be the first person at MCV to receive one, although he likely will use the body-worn processor for a while

other good news: unlike our last use of anesthesia we were not given any doom & gloom statistics about BPDers. The anesthesiologists were quite confident that he would not have any difficulty

7:30am - back to the OR
8:45am - we received a call from the surgical nurse: Noah was prepped and anesthetized and they had started the procedure 10 minutes earlier

11am - the head of audiology and the surgeon came out - the surgery went well! They would call us when we could go see him (they still had to wake him up at this point).

12pm - still no news... we asked at the desk & they said it could be up to 2 hours after the surgery ended before we could see him and that we could only ask every 45 minutes

12:15pm - the recovery room nurse called: he was awake and very thirsty. They wanted to know if he would drink apple juice (maybe?). They would call us when he was ready to go to his real room as the recovery room was very full and we couldn't go back.

12:30pm - visit from the ent intern: What exactly does he eat? We assured him that we had brought Pediasure & Duocal in case they couldn't get it mixed for us.

12:45pm - visit from the ent intern: He had ordered Pediasure & Duocal 6 oz every 4 hours. Was this ok? (Perfect!)

1:00pm - the recovery room nurse called: He was still thirsty. The apple juice was a hit! There was a wait on the room. Go get some lunch and then it should be ready.

1:30pm (after eating lunch) - the receptionist beckons us forward and whispers cryptic directions: "Take the elevator to the 1st floor. Take the other elevator to the 5th floor. Pick up the phone and state your name. Don't tell anyone I told you this." (apparently Noah was not interested in lying in a recovery room bed - they were going to let us in with him against hospital policy)
2:45pm - still no Peds bed available. Brian goes to pick up grandma at the airport.

3:45pm - Brian is back from the airport. We're still in the recovery room although Noah is quite recovered from anesthesia. Still no bed available.

5:00pm - still no bed available. They're going to bring us back to the peri-surgical unit (where the adults stay to recover from same-day surgery) until there's a bed available.
7:30pm - finally a bed! We're in a 4 person observation room on the Peds floor. Our roommates: A 4 year old asthmatic girl & her mommy. A 3 year old (very whiney!) post surgical boy & his daddy. A post-NICU preemie waiting for a long-term room elsewhere.

9:30pm - Finally some dinner (Thank goodness Papa John's delivers!)

10:00pm - Noah goes to sleep. Daddy & Grandma goes home. Mommy tries to go to sleep but the little boy in the next room wants his Mommy and the preemie keeps alarming (and making preemie noises which I guess I'm particularly attuned to).

Wednesday:

2:30am - Mommy finally gets to sleep in spite of the preemie and the little boy next door.

3:30am - Noah wakes up feeling much better and is ready to play.

5:00am - Noah is released from his bed and monitoring because he threw up on his foot with the IV and the pulse ox. We start walking the halls to keep him from disturbing his neighbors.

6:00am - The entire surgical team rounds on Noah. The ent intern says he will write up report right away and we should be able to leave as soon as my Brian comes back.

8:30am - Brian and Grandma arrive. Still no discharge papers! The only thing that will keep Noah from ripping off his bandage is walking the halls. The hospital staff think it's hilarious that we keep walking back and forth.
11:00am - Still no discharge papers. The nurse calls to check and the intern can't be bothered to come back until sometime in the afternoon. 12:00pm - I'm about ready to call our pulmonologist to get us out of here when the intern wanders in.

12:30 pm - We're on our way home!

Overall Noah was a trooper and things went very well. He managed to only need O2 for 20 minutes in the recovery room which is amazing to us. He had a bit of a fever overnight which is not unexpected from the anesthesia. Apparently surgery is quite good for his appetite because he's been chugging him bottles every 2-3 hours (hopefully that side effect won't go away!). He's an expert at removing his bandage, but he'll only need to wear it until tomorrow. Thank you for all of your prayers!

Tomorrow's the big day!

Less than 24 hours from now Noah will have a cochlear implant. I'm currently pretty excited about that. If you ask me in 5 minutes I'm liable to be scared out of my mind. Talk about an emotional rollercoaster! This morning we had our pre-op appointment at the ENT office. It was a total waste of time. The appointment consisted of 2 parts: history and physical. We had the physical exam first - a nurse took Noah's temperature and listened to his heart. That's it! Then history... I had the abridged version of Noah's medical history typed up, so I gave that to the doctor when he came in (and by doctor I mean first year resident who'd probably never seen a 24 weeker before in his entire life). He read the paper, took some notes, and then asked some questions. Q&A time went like this....

Dr.: So, did you have any complications in your pregnancy with Noah?
(What, did the C-section at 2am on a holiday at 24 weeks gestation give you a hint? Stupid resident.)

Emily: Yes, I had HELLP.

Dr.: So, does anyone in your family have any problems?

Emily: What kind of problems?

Dr.: You know.... Problems.

Emily: Hearing problems?

Dr. No. Problems.

Emily: Health problems?

Dr. Yeah, you know.... Problems.

Emily: My blood pressure is still elevated from the HELLP.

Dr.: What's HELLP?

I'm sure glad he's not doing the surgery! Speaking of surgery... We'll be at the hospital ready to go at 6:30 tomorrow morning. Please pray for Noah, particularly that he would handle the anesthesia well and have no breathing difficulties (this is our biggest fear right now).

Signing Time

Noah is a Signing Time addict. We originally got the movies to teach us sign language at the recommendation of our first speech therapist. Noah is not currently learning sign (we're going the AV route since he's getting an implant), but we would like to teach him eventually. We started watching the videos when he was too young to care about the TV (and too deaf-blind to notice it). But then he got older... and got hearing aids... and his vision improved. Somewhere along the line he got hooked. Now he will watch Signing Time at any opportunity and if Mommy says no TV (which is typical) he will happily stare at the DVD box and have long conversations with Rachel and Alex and Leah. I was convinced for the longest time that "Rachel Coleman" would be his first word. He will blow her kisses when she's on the TV or kiss her picture on the DVD box and if we say "Do you love Rachel Coleman?" he chortles and gives a big smile (Yes, Rachel Coleman is one of the 15 words that he understands... go figure). Signing Time Live came to Richmond in the fall and we really wanted to take him, but it was the week after we were told to go back on lockdown so we had to skip it. I have friends whose babies are addicted to The Wiggles or The Doodlebops, so overall I'm thankful for this Rachel Coleman addiction. But it does cause us some problems. Our AV therapist would have a fit if she knew the regularity that Noah is exposed to sign language. Our audiologist said that we should bring Noah's favorite movie to his first implant mapping (March 14). Is it a sin to bring a sign language video to a cochlear implant mapping? It is his favorite, after all. Oh well. We love you, Rachel Coleman!

Valentine's Vacation

Our surgery is next Tuesday so we planned to be in total lockdown. Usually Brian & I leave the house occasionally without Noah, but this week we were going to stay in - no reason to risk him getting sick before surgery, right? I thought my plan was really great until we woke up yesterday morning without any electricity (or heat!) thanks to the ice storm that just came through. Did I mention that we had no heat? As if freezing our butts off was not bad enough, no electricity means no nebulizers and no nebulizers means less than stellar lungs for Noah's surgery. So we packed up and drove about 15 miles south where they just got rain and had electricity (and heat!) and stayed in a hotel. It was actually really nice - a little Vaentine's Day mini-vacation. We watched lots of TV (we don't have cable at home, so it was a treat), went window shopping at the mall, and generally ignored Noah who was perfectly content to spend most of his time making faces at himself in the full length mirror in our hotel room. Our electricity was only off for about 4 hours, but we were having so much fun we decided to stay the night anyway. School was cancelled for the kids today and Brian had a 2 hour delay, so we were in no rush to get home. Noah shows no sign of sickness from all of the hotel germs, but with our luck anything he picked up will spend the weekend incubating and come on strong in time for his pre-op on Monday. Five days until surgery...

Healthy Lungs & Green Teeth

We went to our pulmo for our pre-surgery visit and it went really well. Noah's lungs sounded beautiful and he was satting at 100%. We saw a new doctor, which was fine, but he was cracking me up. Noah has racked up quite a bit of medical history in the last 20 months and it can be a bit overwhelming to even the most experienced doctor. When the new pulmo came in he said "I tried to read Noah's history, but there's quite a bit of it. Would you say a good summary is 'he's had lots of issues but things are headed in the right direction'?" I like a doctor who's concise. :-) I'm going to have to remember that the next time somebody asks me for a medical history on Noah.
They had some medical students visiting today so Noah got to show off his green teeth to a dental student. He didn't like it very much, but I thought it was fun. I like it when they try to be polite about it - as if it might hurt my feelings if they call them green. I hear a lot of people mention his "slight discoloration" or my favorite... "they're not THAT green". As if it's ok to have green teeth as long as they're lime green like Noah's. Forest green teeth, THAT would be a problem. I mean, I must admit that sometimes it's hard wondering whether he'll face discrimination and things like that, but as far as complications from cholestasis go I much prefer green teeth to brain damage or liver transplant.
Seven more days until Noah's surgery...

Replacement Camera

We have had the same Canon Elph since Brian and I got married. His parents bought it for us so we would have a "nice digital camera". It has served us well, but Noah's propensity for finding it and banging it against the floor finally caught up with us. So, after a cameraless week, here are some new pictures with our new and improved Canon Elph. This one has lots of cool new features, so I'm really looking forward to playing around.

Noah & his Daddy

Isn't this a better spot for the spoon than in his mouth?

Feeding Therapy

I feel like such a feeding loser. How is it that I can't manage to get my baby to grow and eat? I tried valiantly to pump for him in the NICU and only got drips, so after 8 weeks he moved to formula. I couldn't teach him to bottle feed so he came home with an NG. And now we have to do Day Patient Feeding Therapy. This means that when spring starts instead of dragging my little guy to Starbucks to hang out with my friends (that I've barely seen all winter) I'll be driving an hour each way during rush hour to spend the entire day at Children's Hospital in Richmond. Noah will be given 4 one hour feeding sessions between 9:00 am and 4:30 pm with breaks in between for naps and running through the halls licking things covered with nasty hospital germs. And this isn't the kind of feeding therapy like we get now where mommy feeds Noah while the therapists offers tips. This is the kind of therapy where they take my baby into another room to feed him while I watch on video. I don't get to try myself until they've "fixed" him. I'm sure it will be wonderful for him and he'll get the kick in the butt he really needs to start eating, but what about me? This is not how it's supposed to be.

Surgery!

I'm obsessed with worry over Noah's upcoming cochlear implant surgery. I feel like I handled the NICU ok. I mean it was stressful and emotional but I wasn't queasy about procedures and I was fairly adept at rolling with the punches and dealing with whatever came up. I've held my screaming baby during ROP exams and watched him turn grey and lifeless as his heartrate dropped lower and lower and the doctors fight to bring it back up. I've seen blood draws where the blood was black because there was much CO2 and so little O2, and I've battled against trachs and broviacs and doctors giving up on my baby. I can deal with the hospital. But somehow it just seems wrong to willingly put a child through a surgery that they don't need. Don't get me wrong, I think that the implant is the best thing for Noah. While he makes good use of the little hearing that he does have, even with his hearing aids it's not enough for him to hear all the sounds he needs to. Sign language isn't really a good option for a main communication choice since Noah has a "dual sensory impairment" (aka deaf-blind). I guess I've just enjoyed having my baby at home with me and don't want him to go back into the big, bad, hospital (even if it is just for one night). Thirteen days and counting...

Playing Hooky

Yesterday I woke up not ready to deal with my day. I was sick of being stuck in my house and needed a break. When our speech therapist called to cancel we decided to take the day off from life. Our pulmonologist, I'm sure, would shake her head sternly if she knew we took our little BPDer in public (*gasp*) in the middle of flu/RSV season (*sigh*) but we were very careful. We didn't let Noah touch anything that didn't belong to him personally and we used gallons of purell before touching him. When we were shopping at the mall, we even went as far as to not go down store aisles littered with other people. Things went really well until almost the end of the day. We ate a quiet lunch at a table at Sbarro's far away from everyone else and did tons of shopping. When we were at Target we found these really cute shirts that said "I tried to be good but I got bored" on the front. Unfortunately while we were looking for Noah's size he got bored. He took out his hearing aid and threw it. Not too big of a deal if we had noticed it just then, but of course we didn't notice until we were looking at the video games 10 minutes later. We frantically retraced our steps and finally found the hearing aid (a little dusty but in working order), but it was a harrowing experience. Later we decided to end our day with a bit of dinner at Applebees. That would've been a great idea except for the minor detail that Thursday is family night at our local Applebees. There were a million small children breathing the air close to us and it was a little more than we're used to. Noah was his charming self so we drew lots of attention from the other diners. They all thought he was cute and our waitress even said she wished that when she had kids they were just like Noah. She meant a happy social baby with big dimples who didn't rip up napkins and throw them on the floor like the baby at the table next to us, but I was amused. You want a deaf-blind baby who doesn't eat, can't leave the house and spent the first six months of his life in the NICU? Here, take ours. The big test of our new resolve that it was ok to leave the house sometimes as long as we're careful came just at the end of dinner. The little boy from the next table over came within inches of Noah's face to say goodbye. He literally leaned his germy little face on the edge of Noah's nice germ-free highchair cover. When he started talking, Noah (as is his custom) went to put his nice clean fingers in the germ-monster's mouth. I quickly grabbed his hand and said sternly "don't hit". Fortunately germ-monster's daddy bought my line and extricated him from the situation lest he be beat up by the happy social baby at the next table over. Overall we seem to have survived the day, and it was nice to get out for a little while. I can't wait until spring when we can go to museums and the library and the theatre without feeling guilty.