We’re down to the last two weeks of summer which is simultaneously unbelievable and about damn time. There’s this adage about how, in parenthood, the years are short but the days are long and that is how i feel about the past summer. The kids eat so much darn food that it has been an expensive season with them all home. Also, if I take them somewhere to get out of the house? It inevitably costs $50. With four kids, even McDonalds costs adds up. We’ve spent months at the local (free) playgrounds, at my parents’ house, the library, walking around the block and anything else I can think of that is free. July was more mild than usual so we spent countless afternoons outside which was nice in its lack of swampy hotness.

Lily has adapted well to living minus a trach. She is yelling at her brothers quite loudly and hasn’t had any breathing problems. She should be able to ride the bus along with them when they start four year old preschool. Speaking of preschool, I’m nervous about one aspect of their second year of preschool matriculation. Last spring, the school asked if I preferred morning or afternoon preschool and I shrugged it off saying, “Well, by the time they are four, they probably won’t be taking afternoon naps anymore so they could go in morning or afternoon as long as they all go at the same time.”  Five months later? They are still taking naps most afternoons and are crabby as hell when they don’t. They are scheduled to go to school in the afternoons from 1-4 pm and I have no idea how this is going to work. Lily can get by without a nap or just a cat nap, Ethan gets wired if he doesn’t nap and Jack crashes on the nearest semi-horizontal location. I’m concerned they are going to fall asleep at 5 pm and never see their father again because he doesn’t get home until close to 7. Maybe when they turn 4 on August 19th, two days after preschool begins, their need for naps will suddenly vanish and all will be right with the world but I doubt it.

At the end of last school year, I pledged to myself that I would send the triplets back in the fall potty trained and it looks like my goal will be met for 2/3′rds of the triplets. Lily and Jack are doing very well with only occasional accidents and Ethan is, well, working on it. I give them M&M’s* when they use the potty and promised trips to Build-A-Bear Workshop and camping when they go in the potty everytime. They may be close to four but they weren’t supposed to be born until November so I like to think they aren’t that late in abandoning diapers.  I’m just glad I don’t have to buy them everyweek any more.

Their vocabulary continues to build and they say funny, mis-worded things all the time. Jack has been wielding the power of language to tell me I’m using the wrong word if I say no when he wants me to say yes. The triplets sit around and have intense conversations about topics only they understand and crack each other up when they aren’t beating on each other and screaming. It is a very love/hate relationship.

My oldest kiddo just returned from his first scout camping adventure with Dad. They had a wonderful time hiking, fishing, shooting arrows and BB guns and building too large of fires. It is so wonderful to see my husband fully embrace his role as his Dad- not just his Step-Dad. We never use that term because he just isn’t his Step-Dad. He may not be his biological father but he is that child’s Dad. The two of them are in-sync with each other, have similar interests and sometimes the same mentality. I am so proud of my husband. I’m also very proud that my kid inherited my love of animals and wasn’t one of the kids chopping up frogs and thowing them into the fire at camp.

I would like to go on a few more adventures before school resumes and get in some quality pool time in the next two weeks. I have to save money to spend a fortune on back-to-school gear and prepare for all of the kids’ birthdays. What do you want to do before summer ends?

*Jack looked at a handful of M&M’s the other day and exclaimed, “They’re just like MOM’s but M&M’s!”. Have I mentioned Ethan can read A LOT and Jack isn’t far behind? They are three. Color me amazed.

I suppose it is unfair to write a big build up to last week’s medical happenings then just go back to procrastinating and not posting. What happened? Is Lily okay? Is she home without a trach? Did we go to the all-star game? Did my Dad’s enthusiastic reaction to my last post give me performance writing anxiety? Did I make multiple fruit pies today?

Lily did great. We arrived at the hospital just after sunrise, checked in and were in pre-op within an hour. The nurses and I decided to forego Versed this time before she was taken into the O.R. because it seems to make kids very cranky and hungover-ish when they wake up. I’ve been told it is often the reason they cry when they come out of anestesia. She wasn’t nervous to begin with so we skipped the kiddie cocktail (Tylenol or sometimes Tylenol with codeine mixed with Versed) and she didn’t cry when taken back for her scope. An hour later, the doctors emerged with big smiles on their faces and said she did great. She had a 25% narrowing of her airway due to permanent scarring from multiple intubations pre-trach in the NICU but the doctor said it shouldn’t be an issue (and that size narrowing is only an issue in infants most of the time). Her airway had grown and widened enough that she was doing fine without the trach. I went to the recovery room where she was stirring with an oxygen mask on her face that was taken off within a few minutes. She NEVER needed oxygen again for the rest of the stay.

By 9:00 that morning, we were in our room on the floor hooked up to monitors and watching The Little Mermaid (followed by The Little Mermaid 2). Because we had skipped the Versed pre-surgery, Lily wasn’t groggy or cranky and really not in the mood to stay in a hospital bed all day. We ordered her room service, a first in the hospital because she wasn’t sick and has only recently started eating most food by mouth. The child-life coordinators brought her a bag full of princess toys, a giant balloon and a “Congratulations on getting rid of your trach!” card signed by everyone on the floor. Cardinal Glennon Children’s Hospital is a wonderful place. Many of the doctors and nurses have been there for decades and they have extremely family-focused, child-centered care. By noon, she was surrounded by toys, crayons, coloring books, play-doh and stickers while ordering me about and eating chips. By evening, she wanted out of that bed and to go home but she finally fell asleep (lucky girl- I tossed and turned on a pull out chair until 3 am). The next morning, we woke up and were sent on our merry way. The worst parts of the whole visit was when they took her IV out and when her princess balloon floated away. We got home in time to collect her brothers and cousin and split because our painter friend was painting our living room and hallway (need a painter? i have a recommendation!).

Because of the painting, we spent most of Wednesday, Thursday and Friday out of the house doing a kid tour of the area. We went to Grant’s Farm, The Botanical Gardens and Monkey Joe’s indoor bounce house. It was a busy week and by the weekend, I was ready to collapse. Instead, we took a day trip on Sunday to Hannibal, Missouri to visit Mark Twain’s boyhood home. It was a complete whim* because we were only going 30 minutes away to pick peaches but the orchard was closed so we decided to keep going west to Hannibal. Mike and I love driving around with the kids out in the country and they are exceptionally good in the car so we had a great time even if we didn’t make it home until 11 that night.

This week has been a little calmer. Lily’s stoma is small and it is already half closed. Her voice is just as loud as before and it is getting even stronger- lord help us.  We were afraid she would miss her trach but she seems to enjoy its abscense. We are looking for a family that needs her unused trach equipment and gleefully piling excess medical supplies in the garage in hopes of getting rid of it soon.

As for the other questions… We didn’t go to the All-Star Game and I only know one person who did and that was through her work. I watched a few innings and got bored. I like baseball in person but am not much for televised games.

My Dad really loved my last post about his heart (that’s what he calls Lily) and told me he was going to print it out and put it in the family Bible. Now, how exactly am I supposed to follow up? The bar has been set too high so sorry to disappoint with subsequent ramblings. But, it was a very sweet reaction that made me smile amid my timidity.

Finally, yes, I made two fruit pies today. I made a blueberry pie and a peach-custard pie all from scratch except the crusts because I’m not good at crusts (I can make them but always fail at transferring to the pie pan without too much sticking or ripping). I’m a pretty good cook when motivated plus my husband doesn’t like cake but loves pie (weirdo- he also dislikes sno-cones). I probably won’t cook a real dinner but we’ve got plenty of dessert! If only we had ice cream to go with it.

Now you are caught up on the excitement of the past week. Tomorrow is Ethan’s last day of summer session pre-school and one month until the regular school year starts for everyone. It is the last month the triplets with be 3 years old and the 2nd to last month the oldest will be 9 years old (DOUBLE DIGITS! COMING SOON!). The oldest is going on to cub scout camp with Mike this weekend and the triplets and I have more playgrounds to investigate. Hope your late July is going well. Don’t forget to stop and enjoy the buzzing cicadas and summer blooms.

*Whims. I do almost everything on a whim. Going to Hannibal and baking seasonal fruit pies are just two examples of my whimsical ventures. Mike is amused and sometimes irritated by how whimsical (or random as he sees it) I am but I yam what I yam. I don’t like making big plans; I like to do what I want when I want. Schedules chafe me. I’m an employer’s dream.

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.