Willow pulled out the ng tube again today. So, after her physical therapy session we went across the street to put in a new one. The last one had a blue port. Now it's pink. I hate putting those in. She quit breathing and turned sort of purple (almost blue, almost) and I kept asking the nurse if something was going wrong. I was just about to yank it out myself when Willow sucked in a big breath and pinked up again. I think that she sucked some snot into her lungs from crying so hard. It was a very very difficult visit and when I came home Lexy was a total monster.
But, two nice things (more really, but here are two) happened today, too. While I was laying down with Sophie at naptime, she was pretending a little Finding Nemo senario. She was swimming her hand over her while she was on her back chattering away about Marlon and Dorie. Then she stopped her hand and yelled, "AHHHHHHH! IT DA SKY-BUH DEW-BER!!!" (that's "it's the scuba diver!") I'm going to use that word now, skybaduber! It's fun. Then she asked me to pretend to eat Nemo, so I did and she pried my mouth open with both hands and looked inside yelling, "NEEEEEMOOOOO!!" I pretended to barf and said, "Here he is!" She reluctantly took him from my hand and hung her head. When I asked her what was wrong she said, "Now Nemo is mad at me."
While we waited for an hour or so in the warm exam room I put some tiny clips with glitter on them into Willow's hair. Then I got to spend about fifty five minutes picking specks of glitter off the exam table paper and putting them on different parts of her. She sat there in just her diaper, playing with the backpack and stuff in it. I put glitter on her shoulders, on her earlobes, in her hair. I was completely focused on and engrossed in my task and I don't know why but I did enjoy it very much. She looked really cute with all that glitter in her hair (we're talking maybe five little pieces; I kept moving them around) until the time came to put the tube back in. And now we are back where we started. I think she and I both might have a little post-trauma stress from that one. It was hellacious.
I'm off to put the children to bed. Lexy better be in a better mood.
AHHHH! I can hardly sit up straight, because all my energy is directed at not buying lots of these and some of those. And they were right on to name the company after this.
Sometimes the internet just hurts.
The supplies of Girl Scout Cookies (people who are boycotting them are grade A top notch ASSHOLES) and the antibiotics are dwindling so we're feeling finer lately. Willow has her first ever ear infection and is so nonchalant about it that I wouldn't have known if her doc didn't see it on a routine follow up visit this week. She didn't run a fever or anything. It seems that lots of little kiddos at Lexy's school have strep, so I will have to remember to get him to wash up when he arrives home. I can't get that sick anymore. It's expensive when you're uninsured. It's also unsafe to let the kids play in the girls' room while I sleep off a 103 degree fever in Sophie's bed (mattress on the floor so she won't roll out or fall off while jumping). I woke up delirious to Soph falling off her play oven from Ikea with Nathan yelling, "IT WAS AN ACCIDENT!!" before she even slammed into the wall and the basket of stuffed animals and baby dolls. I was so out of it, I ordered him to leave the room, then I ordered him back, then I lectured him about climbing on the furniture. Then I fell asleep and he woke me up to ask if I was done getting him in trouble. And that was not one of the weird fever dreams I had.
Today after school Lexy went to play at a friend's house and Nathan was so bored he was literally climbing the walls. He stands in the doorway, puts his hands and feet inside the, what do you call it? doorjamb? I don't know, and climbs up like a little crab monkey or something. Then he hangs from the molding over the doorway, swings a few times and drops to the ground. He also puts his hands on one hall wall and his feet on the other and, with his belly facing the floor, climbs upward. Trying to make him stop is pointless. I just kind of poke him now when I see him doing it so he'll fall down. I think I prefer it to the furniture climbing. If anyone local knows of a used wooden play structure thing for sale please tell me. I think the cheapest new one is at co$tco for seven hundred bucks. Nathan says it has to have a doorway for him to climb.
(ten minutes later. . . )
Well. Now Willow is awake and hanging out with me. I had some pineapple. It was good. Nate peed the bed and managed to take out a quilt and comforter along with the sheet and futon and I forgot, last time I made the bed, to put the old polyester comforter between the bottomsheet and futon. It started out as a desperate attempt to cushion and pad the hard futon and save my back since I sleep laying the wrong way on a bottom bunk bed with four kids
I'll let that sink in a moment
but it is a double size futon
and ended up being a good way to keep the futon dry.
Poor Willow needs some focused attention and I hate typing with one hand.
If you want to make a mama's day, say to her, "You have four kids?! You're too young and beautiful to have four kids." I guarantee she'll forget about her horrible cystic acne, those too-ugly-to-be-heroin-chic dark circles under her eyes, the sty on her eyelid, her matronly nursing bra strap that won't stay in place, her hair in desperate need of cutting and styling, her unmadeup skin and unfiled nails and lotionless hands and (aaak! I was rushing a little this morning and forgot and this has never happened before) unbrushed teeth.
We went to a wedding today. It was beautiful and fun and I'm very happy for my friend even though she's moving 3,000 miles away. If I could post pictures I would.
I bought a pair of pink jeans. Never say never, right?
Okay, I hafta type really fast so I can go to bed.
My poor honey is out working in the cold rain. I miss him.
Today was Willow's birthday. I had sort of hoped after her roller coaster year that today would be a day for her to relax and eat cake and play and be happy. Not in the cards. She has a nasty cold and it has settled in her lungs. Sophie's too. Today she had a checkup with her pedi for weight gain. I was glad we were going because she was wheezing and early Wednesday morning, around 3 am, we gave her a couple of puffs of the albuterol inhaler.
So, when I got to the appointment I asked them to take a listen, and even without the stethoscope it was evident that she was having problems breathing. Her weight gain was about 3 ounces for the week. She's grown 1/4 inch in 20 days. We thought that by now her medical issues would be winding down, but really things are just growing even more complicated. The doctor talked about admitting her overnight because of the wheezing, which was diagnosed as "viral wheezing." I gave Willow three 10 minute breathing treatments, with time between each for the staff to listen to her lungs, check her blood oxygen, her pulse, and her respiration rate. They didn't help much. A little. She was given a dose of prednasone, along with a prescription for four more days.
As for the original problems, here are the new developments:
+she will be tested for celiac disease +lots more blood will be drawn to check her iron and platelet levels, liver function (she's had some elevated numbers), zinc level, lead exposure (we did this last month, so I'm going to ask the doctor why it is being repeated), and a cbc.
+I am supposed to write down everything she ingests, and how much, including when and for how long she nurses (groan)
+we have to see the evil nutritionist to determine what her general caloric intake is and if it is adequate (double groan)
+she will see the GI doc and possibly have endoscopy to see if her intestines are damaged and causing her malabsorbtion
And in the meantime she has weekly doctor visits and physical therapy and home health visits every other week. Also, Lexy has homework and is in a play. He needs help learning his part, and there are t shirts and costumes and photos and tickets to order. There is a fundraiser and we're supposed to sell coupon books. Nate has gymnastics weekly. Sophie should go to the doctor, too. She and Lexy need to have their dental appointments rescheduled. The van REALLY needs to have multiple repairs done. We are going to a wedding and a birthday party this weekend and need to get gifts. I didn't get Nate enrolled for kindergarten in time to get into Lexy's school. Friday I will get a copy of his birth certificate and see if there's room at the local school. I have to figure out if Lexy will go there, too.
I think my head might explode.
John is such a good dad. He put the air purifier next to Willow's crib and cranked it up. I love him.
Tomorrow I have to leave the house at 7:30. My mom takes Lexy to school, because she is the best. I will drop Nate and Soph off at K's house and take Willow to a 9 am appt. Of course it is rainy and Nate usually sleeps until 8:30 or later. Should be a wonderful morning! Ya know, I write this all down because I don't have a paper journal going these days and I want to remember all these details later on so that if I feel busy and stressed I can look back and be glad it isn't now still. Make any sense? Anyhoo, if the whining is too much, please skip or skim.
Sophie is on my lap, coughing and feverish and clutching a little magnet dog. She wants her Papa. She does not want homeopathic cough remedy or tylenol. I think she and Willow both have RSV. I'm going to Willow's doctor tomorrow anyhow so I'll ask her to check.
Can we just be healthy?
I'm getting incredibly frustrated with Willow's medical care. She still has the ng tube. I give her three ounces of progestemil (a pre-digested formula to combat her malabsorbtion) five times per day. Before those feedings she eats solids. She likes scrambled eggs, yoghurt, avocados, bananas, crackers, cheese and so on. She isn't picky. She's growing longer and gaining weight. She nurses frequently. But, the doctor won't take the tube out because she isn't gaining fast enough. She's gotten pretty chunky and I don't know where she'd put all these pounds the doctor thinks she should pack on. I also don't know how I could reasonably get her to eat more. I wish they'd put their stinkin' charts away and look at the patient. She is gaining. She is eating. Her anemia is resolving. Why obsess on how she compares to other babies? She is a preemie and needs time to catch up. Today the home health nurse said, "How early was she? Seven weeks. Oh, that's not much." Right. Weighing four pounds and not having a suckling reflex and spending 15 days in intensive care, those things couldn't possibly cause a baby to not measure up to the stupid growth chart!! How silly of me to think so.
I ought to go put Soph back to bed. Poor little thing. Her dial is set to 'cough.'