Monday, October 23, 2006
Thursday my mother and I took Azure in for a check up on her hemangiomas. She has a large one on her leg, which we have watched and bandaged when it ulcerated but are completely unconcerned about. She has another one on her lip. This is resulted in a referral to the plastic surgeon. If it got so big as to interfere with her ability to eat, we would need to intervene in some way (steroids, laser treatments, etc.). It never actually got that big and is now much smaller and lighter in color. He wants to see her back in a year just to double check. No big deal.
Then, things went wrong. I said, “As long as we are here, can I get your opinion on a scar she has?” He consented. I removed the clothing covering her upper arm and the large starburst scar thereon. The scar is left over from a sore she developed her first week in the NICU. They had an electrode cuff on both of her upper arms. Because her skin was so sensitive, she developed this sore. They moved the lead to a different place and we treated the sore with antibiotic ointment several times a day, but before the sore was completely healed, it was once again covered by an electrode. It never did heal properly and left a sizeable scar. I expected him to say something to the effect of: it was a large scar but as she gets bigger it will get smaller and she will probably end up with a bit of puckered skin there or maybe a slight discoloration but in the end, no big deal. I imagined her coming to me as a teenager complaining about this mark on her arm and me sitting her down and explaining that scar was a badge of honor. She fought for her own life and she won! That scar is the reason behind the placement of my latest tattoo, the one of her tiny foot directly off the birth certificate. I had it put on my arm in the exact place she has that scar. (It comes across as a little redneck until people hear why I put it there.) That scar is a part of who she is and what she has been through!
The doctor however, did not say what I expected him to say. He said that the scar would grow as she grows and spread out and that the tissue had separated from the fat below and would never correct itself. He said he could feel right down to the bone and tendons and that this was dangerous. He said the older she gets the tighter the skin will get and she will end up with this giant indentation in her arm. He said that she needs reconstructive surgery to repair it, sooner rather than later.
Now, his idea of “sooner” is in about 5 months. That is how long it will take us to get approval from the insurance company (very likely as it is a result of the NICU) and get her placed on his surgical schedule (he is booked that far out). Her age does not really bother me since by the time we get this done she will be a year old (1yr actual/8 months adjusted). What bothers me is that we thought she was going to have to have heart surgery and it scared the Hell out of us. It is a life-threatening situation when you need heart surgery. They don’t just do it for kicks. Her arm is not life threatening. I never would have requested the scar be fixed for cosmetic reasons. If that were the case I would let her make up her own mind when she got old enough to understand what she would need to go through in order to fix it. What he is saying is that it is medically necessary. Not cosmetic, but important to her health to protect those bones and tendons that are exposed at this point.
I am left feeling torn. If she really does need it, of course I have no problem with her having the surgery. However, this particular doctor is a plastic surgeon. It is his business to fix things that do not look right on people. I want to sit him down and tell him that we went through infertility and that she was an IUI baby and then she was born 3-1/2 months early and we went through the Hell of the NICU and now she is home and relatively healthy and this mark on her arm is pretty much the least of our concerns. I want him to completely understand our perspective. Is it really medically necessary or are those buzzwords to get insurance to pay for cosmetic improvements?
At the same time I am horrified at my own obliviousness. What if I hadn’t asked about the scar? What if I had let it go only to find out in a year or two that her arm was growing abnormally due to the tightening of that tissue or an injury to one of those tendons? I thought it was just a scar!!!!! I thought if anything I might have to rub one of those new scar treatment ointments on it or something. Surgery!
So, I asked what I thought was an innocent question, let Pandora out of the box, and now I am SCREAMING in my own head, Get Back In The Box!
Tuesday, October 17, 2006
Blue: This is Guns-n-Roses!
Azure: (Wide eyed stare at the TV, drool cascading down face.)
Blue: If you become the black sheep of THIS family, you’ve got issues!
T: (Laughs hysterically from the next room.)
Scene: T lifts Azure up in the air and she drools into his goatee.
T: Blehck! Ugh! Ewww! You can go back to Mommy now!
Blue: So you will kiss the dog who licks her own ass but a little baby drool is gross for you?
Blue to Azure: Did you hear that sweetie? If you can learn to lick your own ass Daddy will kiss you.
Scene: Family sitting on couch together after dinner.
Blue: OHMYGOD! Azure has a big bleeding gash on her head!
T: (blinks and stares not saying anything)
Blue: Oh, wait, it is just cherry ice cream.
Blue: Is it wrong if I lick ice cream off the baby’s head?
Thursday, October 12, 2006
Whatever the reason, this just feels so fucking wrong!
Monday, October 09, 2006
The baby will become frightened and cry with real tears when you suddenly stand up and yell "No! You Stupid Idiot! You Idiot!" at the television during a last lap crash which took Dale Jr. out of the lead. Luckily, when scooped up into your arms and hugged and shushed she will settle right down again. Someday she will be big enough to yell at the TV too.
Friday, October 06, 2006
Tuesday, October 03, 2006
Wanting to show the most progress possible I strategically dressed her in a horizontal striped onsie this morning. You know, horizontal stripes make you heavier, right? We checked to make sure the diaper was dry and placed her on the scale. She weighed in at 11 pounds and measured 23 inches long! My big girl! Now here is the best part. She is in the 25th percentile for a 4 month old (her adjusted age). This is the first time she has registered on a regular (non-preemie) growth chart! WhaHoo! Of course directly after the weigh-in, while we were in the question and answer part of the visit, Azure filled her diaper. Lovely. Thankfully my mother took her and changed her while I finished the interview. We probably should have weighed her again after to subtract the poo weight but whatever.
The nurse documented the following:
- “Laughing” which is actually more of a single happy shriek
- “Talking” coos and bubbly tonguey noises
- Grabbing things and putting them in her mouth
- Holding head up
- Alert and follows people around the room with her eyes
- Poops two days in a row every 5 days or so (Yep, today was one of those days)
- Drinking thawed breastmilk and one bottle of Neosure formula per day
- Surrounded by books and toys and is held more often than not
- Earwax being treated with oil
Oh, and the big news this week is, she rolled over on Saturday! Holy Cow! She was on her playmat on the floor and doing her usual spinning in circles routine when she pulled up her legs and rolled onto her side. I thought she was just going to stay there as she seemed to be perfectly content so I went to the closet to get the broom. When I turned around again she was on her belly! I scooped her up with lots of praise and smiles and saying “You did it!” and probably freaked her right the fuck out. I was so proud it brought tears to my eyes. I haven’t been that happy since she first tried to breastfed (sort of) in the hospital.
All of this makes me just feel like we have dodged one HUGE bullet.
Please consider signing the petition. It will raise awareness of prematurity and hopefully also increase traffic to the March of Dimes website. One in Eight babies is born prematurely, that is too many. Help me to help them put a stop to this.
I signed the petition and now I am asking you to follow my lead.
ARE WE DOODLE-WORTHY?