I don’t want to jinx it but Lily is scheduled to have surgery to close the still open stoma from her trach next week. This will be the third attempt at this surgery since she got sick the previous two times so maybe 3 is the magic number. The trach came out last July but the hole has remained. It has been the size of a pencil eraser for months and she still uses it, at least partially, for an airway. She had pneumonia last month and I was able to give her oxygen and nebulizer treatments through her stoma so it isn’t all bad. She has two airways and two ways of feeding her since she still has a g-button as well.

The g-button is still necessary because when she is sick, she won’t eat and she gets supplementary feedings. She is in the third percentile on the weight growth chart and slowly gains weight but quickly loses it (I wish I had this problem). We also use it to give her medicine which is hella useful. There have been times, while wrestling one of the boys in an attempt to give him antibiotics, that I wished all kids had an extra stomach route.

The last time we were in the hospital, I asked about removing the g-tube but her doc pointed out we’re still using it. He said it will become apparent when we don’t need it anymore like it did with the trach. I really like her doctor and walk away from our conversations feeling like I just met with an extra great professor after class. He has been with us through many hospitalizations and I trust him. The g-button stays for now but we would like to close the hole in her neck hence next week’s surgery.

One of Lily’s nurses has become like family. She’s an integral part of our lives and keeping Lil out of the hospital. At night, she gives her feedings, neb treatments and watches the pulse-ox machine. Last night, she brought Lil a picture frame with a music box on the back. I just realized it plays, “I Love You Baby” which is just about the best thing ever (except Mike just pointed out music boxes sound increasingly sad/creepy sounding as they wind down. He’s right).

If Lil’s surgery goes well, she will probably lose most of her nursing hours which will be an adjustment. We’ve had nurses here for four years. The winter olympics actually marked Lily’s four year anniversary of coming home from the NICU. We’ve had nurses here for the same length of time I was in high school -fighting urge to insert graduation metaphor- so her loss is going to take getting used to for all of us.
Regardless of what happens with her nursing hours, we are looking forward to Lily’s neck being hole free. She wants to lay down in the bathtub and take swimming lessons but she can’t do either until her neck has healed. Hopefully we will be on track to be ready for swimming when summer begins. I can’t wait.

We’ve been icked. Jack started first with a fever on Tuesday and has been downright pathetic ever since. I took him into the new pediatrician* yesterday while he moaned, “I wanna go home” the entire time. He was so miserable, he wouldn’t walk but managed to summon the super human strength needed to fight off the evil otoscope. I have perfected my little kid ear check hold so the doctor was able to ascertain his ear tubes were okay, his tonsils enormous as usual, his throat raw and his nose stuffed. She swabbed his throat and the back of his nose with long q-tips which is just what a sick kid wants. I peeled him off the ceiling in time to find out his screenings were negative for flu and strep.

The doctor told me, “Well, he looks like C-R-A-P (She spelled out crap which I found amusing. If E was with me, he probably would have memorized it and walked around singing “C-R-A-P”) and has all the symptoms of the flu.” She said the screening is only 70% accurate and she was fairly sure he had H1N1 since A) He was exposed and B) symptoms and misery not explained by anything else.

What about the immunizations you ask? The triplets were not immunized against H1N1 flu because their pediatrician’s office only got the flu mist which is a live, weakened version of the virus and isn’t supposed to be given to kids with respiratory problems like Lily. We could have taken a chance and given it to the boys but we didn’t like exposing Lily by giving them the weakened virus. We consulted with three different doctors, including the pediatric pulmonologist, about the live vaccine and got three different opinions ranging from “Do NOT give anyone in the house the live virus vaccine.” to “Give it to the boys, the chances of transmitting it from Flu-mist are low.”. We debated and cancelled the appointment for the mist and decided to wait for the shot (dead virus). Our pediatrician’s office still does not have the shot. Other doctor offices in the area are giving it out to “normal” kids and our high risk child still cannot get it. We are at the largest pediatrician’s office in our county- one that is afilliated with the large hospital where the triplets were born- and they still don’t have it. One pediatrician I spoke to at another hospital scoffed when I told him our pediatrician’s office only has the Flu-Mist. He is the same one who said absolutely do not give them the live virus and he said, “I thought only the schools were getting the mist. We only have the shot.”. So, what happened? Who can I blame? Which administrative snafu resulted in our pediatrician’s office lacking in a vaccine other Dr’s have available? Can I find the weak link and make him or her babysit three 4 year olds with the flu?
While I construct an effigy of a bumbling office worker who messed up the vaccine delivery, I have to hold the kids and give them Tamiflu, etc. Lily needs extra oxygen, nebulizer treatments and constant vigilence (She wound up in ICU two years ago with flu. I don’t like her having the flu with her scarred, fragile, prone to pneumonia lungs.). Jack is still miserable and doesn’t want Ethan to look at him, pretend to touch him or talk. Jack is a little irritable. Ethan is still fairly healthy but has started running a temperature nd is crying that Lily isn’t being responsible for some reason (Preschool focuses on being responsible. I don’t think they know what it actually means but they sure like to say it.). Right now, I’m sitting on the couch while each of the triplets are touching one of my limbs but not each other and the dog is laying on my feet while I peck this missive on my Blackberry listening to Sesame Street** I hope they actually have the flu so the Tamiflu kicks in and makes them feel better. Until then, wish me luck.

*This was our first time meeting the new pediatrician since out beloved Dr defected to another practice. I wanted to cry when I saw his art was gone from the walls. The new Dr is nice, spells out C-R-A-P and seems thorough but I still miss our old pediatrician. I may start stalking him. Do you think he would look at my kids if I followed him around the grocery store with a stethosocope?

** I prefer PBS to every other kid station because NO COMMERCIALS to send the kids into greedy fits of toy lust and because the shows are just better. For example, the Sesame Street we’re currently watching has a segment called “Bring Out Your K” which is a play on Monty Python’s “Bring Out Your Dead” and dammit, that’s funny to me. Because I’m also a geek. So yeah, Sesame Street RULEZ!

so here i am. last week was a bit rough so excuse the dramatics. i won’t trash this whole project (but you’re on notice blog! behave! if you hit, you sit!) but can’t promise i’ll update any more regularly than before.

the four year old’s are funny.  they say odd things, everything is a gymnastic challenge and they’ve started to, honest to goodness, play with each other. sometimes, i eavesdrop when they’re in a room by themselves and listen to them cracking each other up or having a yelling debate over the theoretical option of whose turn it is to play with something that doesn’t even exist. their imaginations have kicked into overdrive or maybe their language is starting to catch up because they like to tell detailed, made up stories- especially jack. he tells me the couch is a boat so he has to walk on the back of it or it will tip over when i tell him to get down for the 99th time. everything i tell him is negotiable and he considers a command a reason to think of possibilities before answering. this doesn’t work well when i’m commanding him to get out of the middle of the street but is entertaining/infuriating at other times. he is loving to the extreme, over-dramatic and LOUD. he howls and whines when he wants something. he knows how to annoy all of us into giving him what he wants. he throws himself on the ground in “pain” when he falls over but looks out of one half closed eye to judge his audience’s reaction to his performance. he fervently loves everyone he meets and yesterday i had to pull him away from a woman we didn’t know and whose knee he kept trying to kiss.

lily got mad at me the other day because i took something away from her. she scrunched up her nose and yelled at me, “daddy says you’re a stupid girl!” now, daddy may have called me stupid at some point in our lives but i know it wasn’t in front of her and he had been at work all day. she made it up! what verbal prowess! i was kinda impressed (and insulted) by her multi-pronged attack and tried not to laugh. right now, she doesn’t want me to type on my computer so she’s repeatedly kissing my knee (what is up with the damned knee kissing?!) which sounds cute but is really annoying-she’s only doing it because i told her not to and so she can block jack. jack is screaming and whining because it is his self-proclaimed turn to talk to me. they are rolling a play-doh ball on my bed even though i told them not to and ethan is playing alone in the living room. that’s often how it goes around here. jack and lily fight for attention while ethan uses the opportunity to play with all the toys without the other two bugging him. ethan is wicked smart.

oh. my. god. jack won’t stop screaming. lily is still kissing my knee. and this is when i have to stop (lily is also whispering “stop, stop, stop, stop” to jack over and over again. i don’t know which one is being more annoying). now ethan is in the room and is yelling something about being an acrobat. oh lordy.

the day lily got her trach was awful. i’ve blurred most of it out but i remember key parts of the day at the hospital. i was in her private NICU room to hold her before she was scheduled to have her airway scoped and evaluated with the possibility of a tracheotomy. as i held her on my chest in the reclining chair, she wiggled her breathing tube lose and disconnected the ventilator. i had been told about her doing this but i think it was the first time she did it when i was there. the vent started beeping and other equipment chirped as her lips turned a dull shade of blue. the nurses and doctors asked me to leave the room as they bagged and re-intubated her. on medical dramas like er, there are always tense moments where the doctors shout things like “i can’t get passed the chords” while nurses respond, “her sats are dropping, turn up the O2″. in that small room, the doctors and nurses did say these things in hurried tones while they repositioned her head and tried to get the tube in.

i stood outside the door looking at the floor and waited while they fixed her. after a few minutes, she was back on her machines and crying without making any noise. it was one of the most pathetic sights i’d ever witnessed because she was tiny, weak but incredibly pissed off. the ear, nose and throat surgeon came to tell me her airway was too unstable and she probably needed to have a trach surgically inserted so she could stay on the ventilator. she couldn’t keep her body oxygenated without the vent and there was no way she was coming home without a stable way of keeping her breathing.

lily and her big brother the day of her tracheotomy

she was in an open incubator as they bagged her on oxygen to take her to the operating room. she was wheeled past newborn babies in beds and ,at three and a half pounds, was still smaller than they were even though she was three months old. mike and i waited in the surgery center for what seemed like hours. we were surrounded by people who had brought their kids in for minor, outpatient surgery and would bring them home again that afternoon. our kid had never been home yet. the doctor came out to tell us he did perform the tracheotomy and told us he had to tie the ties holding the plastic tube that was her new airway very tight which would make her face look swollen. she was very sedated and would be in pain when she woke up even through the medication. she was to be sedated which meant shallow breathing and higher ventilator settings. we nodded and didn’t ask any questions but i waited until he left before i burst out in tears. i’m sure i made the other families waiting for their kids incredibly uncomfortable.

her face was very swollen. she didn’t wake up often and did seem comfortable. the nurses murmured she was doing well and said it was probably better. someone told us it would make things easier at home because we would qualify for home health nursing which was the first time it was mentioned. i agreed it would be easier to have someone to help this medically fragile baby while i took care of her three brothers once she finally came home. i was intimidated by the trach care and the idea of housing a ventilator next to her crib. it seemed she would never come home.

we had to go through “mock codes” at the hospital and learn what to do if her trach was plugged or it came out. we met with a respiratory therapist from a home health care company and she tried to explain the multitude of equipment. we set up two six foot high shelves to house all of the equipment in our living room. we called a home health company and found out we would have two shifts of nurses per day. i read books and web sites about trach care (i recommed tracheostomy.com) and spoke to another triplet mom who had a trached child. we signed up with first steps for in-home speech, occupational and physical therapy which would take up three hours per week and added even more people coming in and out of our house.

she came home on martin luther king day. she was born on a hot, humid august day and came home when it was freezing. the nigerian nurse took one look at us and told us to go to sleep while she cared for the babies. and so it began.

after 18 months, she was weaned off the ventilator but still needed oxygen at night. she was hospitalized approximately twenty times the first two years she was home. she caught RSV when the insurance company wouldn’t approve the medication to prevent the illness and ended up in the ICU. she had heart surgery which improved her breathing and oxygen saturation and stayed in the ICU again. we spent winters on lockdown away from possible infection and started three year old preschool praying she wouldn’t catch every illness that came her way (she did). she stopped needing oxygen most nights at 3 1/2 years old. we asked the doctors and therapists when they thought she would get her trach out. they told us we would know when it was time.

tomorrow, i am taking her to the children’s hospital. a different ear, nose and throat specialist is doing a scope to look at her airway and a pulmonlogist will evaulate her latest chest x-ray. if all goes well, we will leave the hospital wednesday morning with a bandage on her neck where her trach has been. i haven’t seen my daughter’s bare neck for more than 30 seconds during trach changes since she was 3 months old. she is tall with a graceful, long neck surrounded by blond ringlets. we’re a little worried the scar will be too concave and too noticeable but we’ve been reassured there are reconstruction options. the stoma is supposed to heal from the inside out within 6 weeks.

she knows what is going on. we’ve talked about it at length but tried not to get too excited in case something goes wrong. i told her we were going to cardinal glennon, the children’s hospital we prefer, and she asked if that meant she got a Cardinal’s shirt. believe me, she’s getting a Cardinal’s shirt (maybe an All-Star Game shirt). my sister has promised her a Hello Kitty toy after her surgery and I want to get her a heart shaped necklace for her newly bare neck. i told her i will take her swimming and she’ll be able to blow bubbles. i can’t figure out how to tell her she may not be able to speak very well until the hole closes. i’m worried about that frustration because she loves to talk.

it has been almost four years since my girl was born very sick. she has grown into a feisty, strong, opinionated girl and it is time. please think of lily and cross your fingers all goes well.

The triplets are nearing 4 years old. It amazes me how fast the years have gone by and how quickly it seems they are growing up. They don’t look like babies at all anymore. Over the last year, their limbs have stretched which gives them the appearance of being all angles of knees and elbows (extra pointy elbows and knees that constantly end up in my tender parts). They say funny things, have unique personalities and each has their own fears and interests. Because there are three of them, every experience is intensified so the time seems to go by three times faster. We’re transitioning from babies to children and I’m grateful and wistful at the same time.

Let’s look back, shall we?

2005- An ultrasound shot of all three. These were rare because it was hard to fit them all in the frame. Guess this was a rare moment of cooperation for the 4th of July. I didn’t know it at the time but I was in the final weeks of my pregnancy. It was hot and I wasn’t allowed to walk around so Mike wheeled me from our friends’ house to the riverfront to watch fireworks. I was really afraid he was going to forget, accidentally let go and send me sailing down the hill into the river. He didn’t.

2006. Dressing them in coordinating (and the rare matchy match outfits) was an endless source of amusement at this age. People gave us lots of clothes- I did not buy my babies matching flag onesies but I sure put them on! I love Jack’s expression in this one. Actually, it kind of looks like the one here that was taken last week. The three of them still fight over who gets to sit in this recliner and if they decide to be friendly, they’ll squeeze two on the seat while the third drapes over the back.

2007- In the backyard, this picture demonstrates their manic mobility. It was and remains difficult to get them all in one shot (guess that dates back to the ultrasound). They are now bored by this lame slide because it doesn’t compare to the big ones at the playground.

2008- Wow. The difference between almost 2 and almost 3 years old is profound. Here the trio are at their first 4th of July parade in their choo-choo wagon. We are still using it even though it weighs close to 100 pounds when they are all riding. We need to put a bumper sticker on the back that says “steptwo.com” because we get stopped often and asked where the wagon comes from (Wait! I just checked that link and Step Two stopped making them! Oh no!) Folks also like to make train noises when we pass by or shout out the standard “Boy, you’ve got your hands full!” or the also popular, “I wish I had that when my kids were little!”

My parents bought it for the kids on their 2nd birthday and it has been an indispensable tool in hauling them around. Lately, we let one be the “walker” while two ride and they all fight over the purple car (why the purple? why!?)

What does 2009′s 4th of July triplets look like? Stay tuned. I’m sure I’ll have a story to go with this year’s adventure. We’ve already been lighting fireworks for them.  As Mike lights them, I sit on the porch with Lily burying her head in my shoulder.  As bottle rockets pop, Jack runs inside saying he’s scared of the loud noises and Ethan shrieks and runs in circles in utter delight.  Triplets- they’re never boring.

I think my Blackberry is dead. The reason why is the grossest yet (I could write a book on my cell phone misadventures). I have been potty training the triplets forever. They will be four in August and we’ve been trying to get them fully potty trained for, well, four years. Granted, it didn’t work at all for 3 years and has only marginally worked for the last year. Lily and Jack are actually doing really well but Ethan? Well, he tries. We are buying less diapers these days so at least we’re moving in the right direction.

(Proof there are really cards for every occasion)

We have three small plastic potties for the kids (in three different colors!) as well as two seats that fit on the big toilet. The seats have never been that useful as they slide around on the big seat and occasionally pinch the boy’s parts. Needless to say, they don’t like them much. They are big enough that the triplets can now sit on the big toilet with somewhat success. The girl in particular does rather well on the regular toilet. They do use the small plastic potties as often as the regular toilet and usually dump the results into the other toilet and flush. I’ve been giving them M&M’s as a reward (3 for pee, 7 for poop. No, I don’t know why the odd numbers but I think they decided) after they flush and wash their hands. However, yesterday I ran out of M&M’s so the kids have been getting a little lazy without their sweet candy reward.

The three plastic potties are in three different rooms. One is in each bathroom and one is in the living room. Earlier, Lily went on the potty in the living room but apparently neglected to dump the pee in the big toilet. For some reason, she started to head to the bathroom but then put it back down next to the couch and I realized it but got distracted. She probably  stopped because they bathroom door was closed which I see as a big hurdle to potty training. With babies, family members get trained to shut the bathroom door to prevent baby from unraveling toilet paper or flushing toothpaste down the toilet. But the potty training starts and the kids have to get in the bathroom yet are still lacking the manual dexterity to turn the door knob. Plus, they still attack the toilet paper when given a chance. Most of the time, I leave the door closed and open it when they request but that isn’t as reasonable now they are starting to go to the potty on their own (hence the reason for the living room potty).

So the pee is sitting next to the couch where my phone is sitting on the arm rest. Ethan sits down and knocks my Blackberry directly into… a plastic potty full of urine. I wonder if that is covered by my insurance*. Sounds like I have another awful trip to the cell phone store in my future.

I have been putting the kids in underwear at home and diapers the rest of the time because I decided disposable training pants were stupid. I’ve been told they are the reason it takes so long to potty train because the kids don’t feel wet. Plus, with their cartoon graphics, they are a reward like big kid underwear when they are still using them like a diaper and don’t deserve a reward. Today, however, I needed more diapers but had a $5 off coupon for training pants plus a free gift card offer so I sighed and bought more princess and disney themed disposable training pants. The kids are thrilled because they think they are for big kids so I keep telling them big kids to pee on princesses or disney characters (unless they are drunk on spring break). We’ll see if I have any more success with the pants this time.

In conclusion, my phone is pee-damaged and I’m sick of dealing with other people’s by-products but just wrote an entire post about it.  If you have any sure-fire potty training tips you would like to share, I’ll be your best friend.

*Yes, it is covered. When I worked for the cell phone company, many people confessed to dropping them in the toilet. I learned a lot at that job. 1) Don’t wipe with your phone in your hand (yuck) 2) Never sign a contract on behalf of your girlfriend or boyfriend 3) Watch your teenagers’ phone bill or you will pay. 4) Your cell phone records can and will be subpoenaed during your divorce proceedings  5) People are freaks

Once a week, Mike helps me sort and put the mountainous piles of clean laundry away. I don’t want to give him TOO much undue credit so I shall point out he mainly puts away the towels and shoves his clean shirts into the top of his half of the closet. But, he does help me put some of the laundry away and keeps me from laundry induced panic. Inevitably, when we are working together to accomplish this task, the kids attack. Both parents are distracted? Working? Score! Yesterday, one of them snuck into the pantry, tore open packets of instant oatmeal and redecorated the carpet with oats. Once, they got into the refrigerator, cracked eggs on the window sill and watched them drip onto the carpet. They can’t do this anymore because we put PADLOCKS ON THE FRIDGE. Now, if I want milk for my coffee, I have to turn the combination lock that mysteriously malfunctions for me and the oldest but never for my husband. I thought I was done with combination locks when I graduated from high school but now I get to relive the frustration of twisty locks to eat. But, now we can put laundry away without screaming at them to get out of the fridge. Whatever works. Plus, I’m drinking my coffee black again and that saves a few calories, right?

Last month, we were putting laundry away together in the little boys’ room when Jack wandered in with a small plastic box that I instantly recognized as the container for my quite expensive and newly replaced NTI device* aka the splint that I use to keep myself from grinding my teeth in my sleep. This tiny device is only about 3 inches x 3 inches and requires my dentist to cast a mold of my teeth and send out for it to be custom created for my poor, worn down teeth.  I get headaches, over-sensitive teeth and spasms in my neck/jaw if I don’t wear it so I caved and bought another one with our tax refund when the previous one disappeared from my night stand.

I had the new device for one week when I saw Jack very carefully holding its box and sipping orange juice (this was pre-fridge locks) out of it. He has a thing for drinking out of containers that aren’t cups. I screamed when I saw he was carrying the box because I knew that meant he had messed with the splint. Mike had no idea why I was screaming until I pointed and whined, “That’s my splint box! He got it out of my medicine cabinet (it was the only non-childproof locked thing in the cabinet)”. Mike uttered, “Oh, I wondered what that was, I saw him take it out of our bedroom.” My head exploded all over the boy’s room. I’m still trying to find bits of my brain but I think they are gone for good.

We searched for hours and never found the splint. We questioned Jack who did not seem to understand what we were talking about. We begged the triplets to tell us where this thing was and they stared at us blankly and brought us shoes, books or whatever else they could find.  Eventually, we gave up.  I’ve been grinding my teeth and clenching my jaw in my sleep which inevitably brings on migraines and makes me generally more anxious.

Yesterday, we were putting laundry away when Mike took a break and needed the car keys. I told him they were on the window sill and admitted that I hadn’t put them back on the hooks he hung specifically for the keys because my hands were full when I came in. The keys were gone. Dammit. We searched the house and quizzed the suddenly mute triplets. How come they won’t stop talking until we actually need information from them? Mike gave up but I continued looking in the little boys’ room. He walked in to tell me I wasn’t going to find the keys in there when I picked up a blanket. He stopped talking and pointed at the keys laying at my feet. Ha. Keys found, he left for the gas station (probably on a taquito run. he eats more gas station food than anyone else on earth.) and I kept organizing the room. In almost the same spot I found they keys, I looked down and noticed… my splint. I think it was in a blanket I was folding but there it was next to my feet.

A few minutes later, he returned from the gas station (the 7-11 cashiers ask to see pictures of the kids. that is how often he is at the gas station) and I ran to meet him and yelled, “Guess what I found?” and he guessed. And there was much rejoicing. Immediately after, he hung a small wooden shelf next to the ceiling for my splint. It now has its own shelf and the kids shouldn’t be able to reach it. I wore it last night and damn if I don’t feel better.

Relatives come to town and tell us the triplets need to “learn the word no” or “learn how to eat in restaurants**” or tell us how we will get these three very smart, active, curious three year olds how to behave and not do things like take my splint or get into the refrigerator. Others scoff at us putting combination locks on the fridge or turning the boys’ bedroom lock around so they can’t get out at night. “They should know better! Spank them!” They will know better, spanking has very little effect on their behavior and we don’t want to scream at them all day. We try to use positive discipline and a program called Parenting with Love and Logic as often as possible but we’re not perfect. We work with them but sometimes we resort to locks, begging, crying (that would be ME begging and crying as opposed to them who did it all the time),time-outs occasional spankings, and not always caring that the house is a mess. I don’t want to follow the kids around watching their every move or care so much about material things that I constantly worry the carpet will get stained. The kids are well adjusted and mostly developmentally approproriate but more importantly, they are happy most of the time. We’re surviving, they’re thriving and one day they will eat in restaurants without wanting to get up and look around. The locks will come off and the regular parenting threats will work to curb their misadventures. Until then, lockdown.

* I first learned about the magic NTI Device from Angela at Fluid Pudding. I asked my dentist about it and he was very enthusiastic about trying it. I have had TMJ/jaw problems since I was a teenager and am a horrible teeth grinder. I even had my right jaw joint surgically repaired when I was in my early 20′s because it was so torn up. TMJ treatment is often excluded from insurance policies (grrr) and I had to fight to have my surgery paid for by my medical insurance. I have to pay for devices that keep me from damaging my teeth and causing more muscle problems. Oh and I am fairly sure my childhood dentist caused some of my jaw problems when he too-forcefully extracted 8 of my baby teeth and 2 more permanent teet. The orthodontist who didn’t fully correct my bite caused other problems as well. I’m sure my parents loved paying thousands of dollars for them to mess up my jaw. But, who knows, maybe my bite/jaw always would have been screwed up and I’m unnecessarily blaming the dental professionals. /tangent

** One of the triplet’s speech therapists told me not to expect a three year old to sit at a table to eat for more than 15 minutes at a time. We’ve changed our home meals around so the little kids aren’t expected to sit for longer than the 15 allotted minutes and it has made dinner time much easier. Restaurant meals take longer and honestly, we don’t like to go out to eat with them at this age. 15 minute meals work well for us.