Wednesday, November 26, 2008

giving thanks

Well, I think it is obvious what I am thankful for this year.

May all of you who celebrate have a blessed Thanksgiving.

Monday, November 24, 2008

nap denial

Oh, internet friends...I love how you get all indignant for me. I may indeed write that letter to the medical director of the NICU. I'll let you know.

Onward to another issue - one that does not involve my baby, believe it or not. Or, rather, does not involve him directly. The issue is sleep. I am not getting enough (obviously). But Daughter is getting too much.

She is just over 3 and a half, and has consistently napped in the afternoons forever. She will eat lunch, play a little, go potty, and then sack out for 1.5 - 3 hours. Yes, really. The problem is, she doesn't want to get up. Much like her father, she wants to just sleep the day away. Mind you, I love the solitude in the afternoon, and I would love to nap also, but you just know the baby refuses to sleep for the entire time she does. Boo.

Anyway, she finally gets up after much cajoling and poking and prodding, and she's totally nasty to me, kicking and fighting as I try to get her up. I've tried waking her early. I've tried just letting her get up on her own. No matter what I seem to try, she is miserable. And then when bedtime rolls around at night, she is wide awake in bed until 11 p.m. Unacceptable!

So yesterday we went out in the afternoon and she just cat-napped in the car. She was bathed and in bed by 8 p.m. and asleep by 8:30. YES! Today I tried to keep her up...and she begged me for a nap. BEGGED ME! What kind of alternate universe do I live in where my 3 year old is begging me to let her take a nap? She has just fallen asleep on the couch, which is fine, the regular noise of the household will wake her shortly. I just don't know how to navigate this issue.

She obviously still wants (and perhaps needs) some afternoon rest, but I need her to go to bed at a reasonable hour and get a good night of sleep. Ah, parenting. Where's that manual, again? Can't seem to find my copy...

Saturday, November 22, 2008


There is a portion of my son's healthcare/diagnosis that I have not blogged about yet, both because it felt quite personal and painful, and because it has been rather up-in-the-air.

Because his problems are related to cranial nerves, many symptoms present themselves that don't necessarily seem to make sense at first. The first neonatologist, at the hospital where our son was born, suggested he might have hearing loss because that is often a result of cranial nerve damage/deficiency. We were frightened of that, especially since there was some question of whether or not he could see, also.

At the second hospital, it was determined that his eyes were ok, and we now know that he definitely sees. But his hearing seemed deficient in every test. Two ABR (or BAER) tests were performed in the NICU, both with questionable results because he was not sedated and moved a bit during the tests. They were performed by EEG techs, and read by a neurologist, but no one in the NICU seemed to be able to tell us what the results meant. It was frustrating, to say the least. Eventually, after the second test was performed, and we begged for some answers, a nurse practitioner looked at the results and told us our son had complete bilateral hearing loss.

Oh my goodness, imagine what that was like. Complete bilateral hearing loss. Our son could not hear.

We went home, told our family and friends to start learning sign language, and I immediately began investigating deaf infant programs in our area. I was so sad and scared. Our son had enough problems with his feeding issues...why this too?

A day or two later I asked to speak with the neonatologist on duty to confirm this hearing diagnosis. I got another nurse practitioner, which did not surprise me as they are the liason between the medical team and the family. She gave me the same information as the first NP.

The next day, I finally got the neonatologist to come talk to me. As an interesting aside, his own 4 yr old daughter has cochlear implants, so I thought surely he would be sensitive to this issue and give me some answers. He came into the nursery, informed me that a) they were more concerned about his feeding than his hearing and b) he had not seen the test results. He then proceeded to tell me all the possible fixes for hearing loss, all the while not really knowing if any of them applied to my child.

Perhaps some of you have had children in the NICU - I wonder if getting information was like pulling teeth for you as well.

Finally, after a couple more weeks when discharge was looming, Hubs and I demanded a meeting with audiology and the NICU team to determine what, exactly, we were to do with this hearing situation. During that meeting, the audiologist, who I have come to know and love, looked at the test results and said she could not confidently say our son had complete hearing loss. We went around the room and NONE of the medical professionals in the group could even INTERPRET the results, much less give us an informed diagnosis. (The two NPs who had told us our son couldn't hear were not present at this meeting - it was not their shift.)

So. I was ready to kill someone at that point and told the room as much. I let them know how angry we were to have been told incorrect information, and I told them who disseminated it. I know that original NP was spoken to, and it was suggested that I write a letter to either the director of nursing or the medical director of the NICU. I am still pondering that. It is so, so irresponsible to give families incorrect information like that. I wanted to throw a brick at her face, I'll tell you what.

Fast forward a week or so, and we have the same test performed in a sound-proof booth by the actual audiologist. She also performed a tympanogram (puff of air blown against the eardrum to check for movement). She determined he has very mild loss bilaterally and it is conductive. That means the cochlea works, and the nerve is taking the sound info to the brain stem. The problem is somewhere between the outside world and the middle ear. His eardrums did not really move, so something was definitely structurally wrong. She confirmed that he can, in fact, hear us, and can hear very high pitches quite well. If we speak loudly he should be able to basically understand us, but it may be muffled.

Fast forward again to this morning. We had an appointment with a pediatric ENT specialist, who took one look in our son's ears and said, "yep, there's fluid in there." That is why the eardrums don't move.


We went from "your son is deaf" to "there's fluid in them thar ears."

In 3 weeks our son will (unfortunately) have surgery again, this time to place tubes in his ears. While he is anesthetized, he will have the ABR performed again by the same audiologist to determine that the tubes did the trick. The ENT guy is pretty sure that should do it, though, and our son will hear just fine.

It turns out this is a common problem for kids with cranial nerve trouble. The muscles that open the eustachian tubes don't work properly, so fluid does not drain.

Last night before I went to sleep I prayed a shoddy little prayer - something along the lines of, hey God, how about you give us a break on this one? And he has. Oh, praise Him, he has cut us a major break. I wish surgery wasn't required, but people, fixing this will give him language! Praise God!

So to wrap up, I want to remind all of you parents out there that you have a right to ACCURATE information about your child and their health care. Sometimes you have to fight and be demanding and even be kind of a pain in someone's ass, but that is our job, no?

Monday, November 17, 2008

thirsties wanted!

I would love to blog, really I would...I just don't have the time to even come up for air right now. Bear with me, I WILL be back.

There is even some knitting! My poor, neglected Daughter was going to have some cold hands if I didn't bust a move making her some mittens, and there is a hat and scarf combo in the near future...I am thinking that will make some quality 3 a.m. knitting when I am waiting for the baby's milk to run through.

Good news, briefly: The child no longer has to have his monitor hooked up 24/7! Only when he is sleeping and/or out of our sight. This is so awesome, because that thing is like a freaking ball and chain, literally. Also, barring anything unforeseen, tomorrow he gets his temporary feeding tube out and the new "button" put in, which will be almost flush against his skin and only be opened/closed when needed. He currently has about 18" of tubing coming out the front of his clothing at all times, which is dangerous, scary, annoying, and quite frankly, rather unsightly. Also, it blows "tummy time" to smithereens. My child is 11 weeks old and cannot yet hold up his own head. Sad, I know. He is certainly behind. He also just cracked 9 lbs. Ay-yi-yi.

Ok, so - things have normalized enough that I have made the big switcheroo to my beloved cloth diapers. I only bought one thirsties cover when I made my order back in the summer, because I didn't know if I would like them. And I DO like them! In fact, I LOVE the thirsties cover, and I want more. The question I have is, does anyone have any XS thirsties covers they no longer need and want to sell to me? I am just looking to pick up a few more at a lower price than the brand new ones. Medical bills and such, you know.

If you have some, or know someone who does, please leave a comment or drop me a line: momwhoknits AT yahoo DOT com. Thanks!!

Monday, November 10, 2008

a day in the life

Where shall I begin? How about 3 a.m.-ish? Ok, here we go:

2:40 a.m. - wake to alarm because child sleeps through the night (thank God for that blessing)

3:00 a.m. - bring warmed bottle of fortified breast milk upstairs, feed to sleeping child.

3:15 a.m. - collapse back into bed.

6:20 a.m. - wake to alarm again. Go downstairs, pump bottles of milk, warm prepared bottle.

7:00 a.m. - feed prepared bottle to still-sleeping child. Collapse back into bed for a few more precious moments of rest, or grab shower if we have appointments that day.

7:20 a.m. or so - get back up to change horribly stinky poopy diaper, generated as direct result of 7:00 feeding.

7:30 - unplug monitor from outlet, throw that and the suction machine over shoulder, grab some clean clothes for the child, grab child, make way downstairs.

7:30-8:00 - perform morning cares for smaller child (clean g-tube site, change gauze, dispense eyedrops), change poop #2, dress child.

*8:00-9:30 - wrangle Daughter through breakfast, potty and dressing. Attempt to eat something as well.

9:30-10:00* - pump and mix bottles

*If this is an appointment day, wrangle Daughter much faster, throw still-damp hair into a shitty-looking ponytail, pack up wee child's machines and diaper bag, and throw everyone in the car...while desperately trying to avoid the use of 4-letter words. Arrive late to appointment, sit and wait anyway, get through 30 second appointment, head home.

11:00 - attempt bottle or breast-feeding, then finish with g-tube feeding.

11:30-12:30 - attempt to feed Daughter something healthy for lunch

1:00 - pump and mix bottles

1:30 - read stories and drop-kick Daughter into her bed for nap

1:40 - end of naptime - attempt to do some laundry, make the bed, eat something, pay bills, or heaven forbid...relax for two seconds.

3:00 - feed baby, cuddle, play, spend quality time

3:30 - wrangle Daughter onto the toilet for post-nap pee, have snack, hang out playing go-fish, candyland, playdough, or coloring while still trying to do some laundry and/or finish (my) lunch.

4:30 - pump and mix bottles

5:00 -7:00 - work on dinner, attempt to calm fussy baby, eat something.

7:30 - pump and mix bottles

8:00 - chuck Daughter in tub or wrestle her into pajamas.

8:30 - read stories and bodyslam Daughter into bed.

9:00-10:30 - hang with baby, try not to fall asleep, perhaps knit one or two rows if baby is sleeping.

10:30 - pump and mix bottles

10:50 - change baby for bed, warm bottle, take baby and all equipment upstairs.

11:00 - place baby in bed, administer final feeding of the day.

11:20 - collapse into bed.

Rinse. Repeat.

I must add that we are currently living with my parents in their large home so that I will have help with just about all of the above while Hubs goes to work. Our house is going on the market, and there is no way I could leave for showings in this situation.

A child with special needs is a handful, even when those special needs are not extremely complicated.

Life is a tad overwhelming just now.