"Hanging in there"

My typical answer for the general "how ya doing?". And it's true. I logged into this blog for the first time in months a few minutes ago, took a deep breath, and started this. I'm not sure what will come through, but it's time...

We've had a time of monumental change and I needed to retreat to a tiny corner and sit for awhile. Process, love on the littles, and just be. Thoughts have been a blur, and I literally am unable to think 5 minutes into the future anymore (which, I'm finding is quite nice actually).

Everett had his last visit with the hematologist in March. Fully recovered, he is within normal limits for both circulating and stored iron.

Tomorrow, he has his first visit with a plastic surgeon. He has a rapidly growing granuloma on his cheek. It is (upon a dermatologist visit) thought to be one that continues growing rapidly and never resolves, is very unstable (as evidenced by Ev running into David on Sunday or so and bleeding and oozing just about non-stop since), and it needs to be surgically removed (meaning stitches...meaning scarring...on his face...hence the plastic consult). It is thought to be benign and the greatest concerns would be 1. sedation, 2. infection, 3. amount of scarring and 4. reducing chance of regrowth as much as possible. I'll post more here as I know more.

Mary Louise and David had eye check ups in January. They went well - very little change in vision. However, David's left eye has been wandering outward during exhaustion since I can remember. It was corrected with glasses to some degree. But the vision in that eye has declined faster than the right. I am now putting dilating drops in the unaffected eye weekly and patching as much as he'll let me (we play pirates...often...and super heroes...who only need one eye...and when all else fails, I let him watch a show I wouldn't normally allow (Spiderman). My favorite David conversation so far was the first time I put the patch on:

Me: Hey David? Remember those super cool pirate patches we got at the store?
D: Yeah!!
Me: How about you come and choose a color and decorate one. Then we can try it out and be rockin' pirates Bub!
D: OK!! YAY!
ML: I want to wear an eye patch!!
Me: ...
(David put stickers on his patch...I put it on)
D: Hey Mom! I can't see if you cover my eyes!

Sweet baby really doesn't seem to be able to see much out of that left eye...but we're working on it. We go back mid summer for a recheck...hoping for some resolution or at least slowed progression.

Mary Louise has had a couple of visits with her pulmonologist. He will see her again mid summer to hopefully stop all meds completely for awhile. This. THIS. is huge. She is taking 1 puff of Advair daily right now. No nasonex, no adenoid removal, no sinus surgery on the horizon...She runs, she plays, we've used the nebulizers once this year during the winter. Vitamins, probiotics, kicking dairy, elderberry syrup, local honey, nettles based allergy vitamin, shark liver oil immune boosters and the correct (CORRECT) preventative prescriptions. It's what's working. Each little step pushed her to get a little bit better, recover from illness a little easier, faster, stronger. Each brick is so important. And with the doctors seeing that with diligence, this preventative approach is well worth the outcome, perhaps hope will resume (because, let's face it, it is so very needed). The next time they find an ubber obnoxious wild eyed bear momma sitting in their office insisting that "it's just not good enough" and "my baby CAN and WILL be better - I just need to find the way"...perhaps in this critical but relatively typical situation, they can offer something more than "well, this med will work, but it's expensive (without even looking at our ins. coverage)..." or "you know, when people come to me, they usually just want a quick fix script - not a long term diet change".

Mary Louise and David will have their end of the year recital this weekend. David is nervous, ML is hard to contain and has informed David that he must NOT mess up her "big stage". Ha. Stinkers. They will have swimming lessons and a fine motor / handwriting course this summer. and....they will attend a Montessori preschool program 3 days per week in the fall!!! It's very small (15 students total), in home, and they are beyond excited to attend "real" school. I'm nervous...mostly about exposure to illness. But, developmentally, it's time for them. They are begging to try. Having an opportunity to get them into a program like this is a great blessing. So, we'll dive in in a few more months!

We've had another round of birthdays here as well...5 and 2 ya'll...5 and 2. 5 and 2...5 and 2...FIVE AND TWO!!



Mouth in the middle:




Ma Monkeys...




My greatest lesson: if you see a field of flowers...stop and enjoy...








and...you know...if you're allergy prone, perhaps have the appropriate antihistamine cream on hand post crimson clover dance...always learning...

xo,

Heather

Due

Yesterday, 4 years ago, I should have been delivering triplets...well, not really. When we found out we were expecting triplets, no breaths were taken between telling us "the news" and telling us due dates were really just arbitrary. Their importance lay only in telling us HOW early our babies would be born - not if they would be. Our babies would be premature. That was a fact. Typical gestation was about 32 weeks - though some mothers (who typically had previous pregnancies) made it to 34. 36 weeks happened - but was exceedingly rare. Our bottom line goal was to make it past 28 weeks with the babies each weighing over 2 pounds. That would give us the most positive outcome for all involved.

Part of me still feels like I should be snuggling with 3 - 4 year olds.

I had, I think, a unique perspective as a NICU mother. I'd seen the inside of those walls before - for the last 6 weeks of nursing school, I spent evenings in the NICU caring for tiny TINY babies. I had just enough experience and vocabulary to know what 24 weeks pregnant meant...and to know that we wouldn't have luxuries like holding, discussion of the social implications of long term nursing, arguing over co-sleeping and differences in upbringing. It didn't matter what outfits they had, what they would ride home in, if we had a room ready. It was quite simple: when one has a baby at 24 weeks gestation, there is really only one question: is the baby alive? well, is he? is she? now? what about now? still alive? ok...what about now?

I remember when I came out of my initial fog enough to see Brent's face - really see it. I have no idea what day it was or how much time I'd lost. He was changed. He was afraid. He was in so much shock. Every single family member or friend who came to see our babies cried. Cried. They would try to tell us how beautiful our family was on occasion...but end up sort of whispering, knowing that beautiful just wasn't really appropriate...because it wasn't. There were people that just came and sat and stared at me - or us. There really wasn't anything to say. It just was.

And were they alive now?

On occasion, I read things like this. I know how detached medical professionals can be. I relied heavily on that detachment to get through making heart wrenching decisions for our children. I watched as a nurse judged us and took jabs at us with medical terms and medicine dosing when we were just trying to have a moment's peace with Kuylen. I still remember the cold explanation when we rejoiced over a tiny TINY (1cc) wet diaper only to be told it was artificially induced by heavy doses of renal medications. I was angry. However, I remember asking "why" during school to the utter horror of my preceptor as I watched twin boys suffer for days before succumbing to their extreme prematurity. I know that the nurse was doing the same thing. The worry must have been there that she would be "stuck" caring for this suffering "lost cause" for shift after shift while we sat crying, wringing our hands and begging that he be alright. Her heart was pure, but her actions were just so bitter. I know that *the right* thing was done when we did discuss end of life care for Kuylen with the doctor and nurse practitioner. They saw us come solemnly into the NICU and stand staring at Kuylen. The doctor quietly asked that the NP stand by as they turned off the color skewing billi lights and quieted the machines. For the first time, we saw him. No matter how much we wished it was different, we both, I think, knew what Kuylen was saying. It was time. Those few moments and that one request by the doctor gave us a lifetime of peace about our decisions. If you just listen, they'll tell you. Children are born so wise. You teach the child the world. The child teaches you about himself - even if said child only has moments to survive.

Everything in the NICU has consequences - and many times, the "good" outcome, isn't really. The scars referred to in that link exist on Mary Louise and David's heels. Their skin would blister with certain tapes and adhesives. I worried about contractures and severe facial scaring from tape and skin tearing as we gained hope that we would be able to bring *some part* of our 2 survivors home. Though somewhat gratuitous, the doctor is right - people don't understand. How in the world can they? There needs to be support and explanation. There needs to remain a standard of care but also flexibility to assess individual situations. But medical personnel are typically ill-equipped with time and psychological training to provide such - and even if they try their very hardest, most people simply can't understand until they are there...or more often, in hindsight. Furthermore, those same medical "experts" can't be what we, as NICU parents really want: future predictors. They can't tell us with all certainty what's to come. They offer statistics and probailities - but for each and every number they offer, there are high and low cases - that's what makes the average true. There's always possibility fueling the everlasting pleading hope of the NICU parent.

Once home, there is more - so much more. You've brought baby home alive. Congratulations. You are now part of a mass machine of checks and balances and more experts to make sure sweet one stays that way. A system that is always on the verge of utter chaos and bankruptcy, corruption and politics. A system that is designed to help those in need, but also, unfortunately, those who typically lack voice. Enter mass budget cuts, insurance denials, maxed out finances. No where to turn.

The percentages, the outcomes, the quality of life conundrums - and at the center is the fluidity of the medical field and the religion. The religion we grasp and cling to keep in hopes that it can overcome the very science God allows us to explore and the technology that exploration allows us to create.

Most people have never seen the inside of a neonatal unit. They've never passed a tiny bed only to see a mound of fabric move and realize that a 1 pound human was just shifting in slumber. They've never watched with a smile as their child turned blue and had to be pounded and rubbed on the back - because sweet baby was just trying to learn to breathe while eating and regardless of outcome, you, as a parent were just so happy to touch the wee one for an instant. Unless you must, there is no way to personally understand the gravity of decisions made in the bustle of an eerily quiet but incredibly packed delivery room where the only sound is the weeping mother.

There are monitor beeps and ventilator rhythms. There are no cries, no coos and there darn sure isn't any question about "spoiling" the baby that "wants to be held again". Yet, the room is filled with children.

And...are they still alive?

Yesterday was my due date. 4 years past. Mary Louise and David and Kuylen are still very much alive. It is with the grace of humanity that they continue to each hold special places in so many hearts.

The other day I spoke to an IT guy about our router (I know - amazing. Sometimes, I can do things like that.) He asked about the noise level here and asked the inevitable: How many?

"3 at home," I answered smiling as I took the advice of a loved one who offered it so long ago as I struggled to continue to acknowledge Kuylen in a non-confrontational way.

He picked up on it immediately. "At home?" he asked.

"Yes, we lost a son and that is my way of acknowledging him."

And that was that - we moved on with simple explanation.

Thank you, IT guy.

Yesterday, we went for a run / bike ride at the nearby state park. David rode 4 miles!! Mary Louise rode 1.5 (!!) then the rest in the stroller. I walked / ran 3.5 miles with Everett and ML. Brent rode the 4 with David. On our way out, Mary Louise saw a deer we'd passed while riding.

"Das a Mommy deer I think."
"Oh? ok."
"What should we name her Mom?"
"I don't know, what do you think?"
"ummm....Fuschia."
"Mary Louise, did you say you wanted to name that deer Fuschia?"
 "Yes. That's her name."
"Of course it is."

That's my girl.

David actually cried when we put his bike back on the truck after he'd rode 4 miles. He wanted to "go wound da bwok and far far away AGAIN!" We were honestly worried he'd get over heated...but ultimately, his determination and get up and go attitude will take him as far as he wants to go.

Kuylen continues to offer quiet strength in times of need. I have gained empathy, compassion and tolerance. I know people see *just* 2. Though I still cringe slightly as I manage a smile response when some asks, "TWINS?!" (for the record, I still think it's a bizarre exchange: "Twins?!" ... (smile, slight affirmative head bobble), "I thought so." stranger goes on about their business - what is the point exactly? Can someone please explain that to me?), I understand what they see - and am occasionally (pleasantly) surprised when people pick up on my ambiguity in response.

Our children have scars - both physical and emotional (or perhaps, the emotional scars are more mine...). But, with careful encouragement and care, they thrive. They are, by all appearances, pretty typical - very typical. I wished for a day that they would be identified by who they are, and not by their extremely early births. At age 4, they are Mary Louise and David - the children - not the micro-preemies.

I'm pretty sure that day has arrived. Rock on kiddos. Happy due date!

xo,
Heather

Special days indeed

Special days take 4 have come and gone...well, we're still on David's currently but, you know, it is after 9pm. We celebrate Mary Louise and David's homecoming by allowing them whatever they wish on their anniversaries.

Mary Louise asked for a "Mommy - Meesey Day". Since she's been begging to have her nails painted, I took her to a salon. It didn't work out, however - she burst into tears and begged to leave as soon as we walked in the door. We went back to the car and she asked if we could go shopping (no, I'm not kidding). I asked where: The Mall. I asked what we were looking for: shoes, I dus want to try some shoes.

Umm. Ok. Mary Louise, I'm going to need to you go ahead and be slightly more girly. bahahaha.

We walked The Mall, talked and tried on shoes. I catered to her every whim and actually allowed her to ride on the little quarter (now 50 cent) rides, and eat ice cream. She literally tried on shoes at 5 different stores, putting each pair back in its box and moving on to the next - never asking for anything...until...she saw these little gems:

(yes, she spent the whole day in that leo and tutu.)
Bless her sweet heart, she insisted that David needed the red one. She was so proud when we got home and she presented him with his special gift.

They have begged everyday to play with those umbrellas.

My baby girl. 4 years home. Our beautiful miracle.
*****************************
David's special day was today. It coincides with my dad's birthday. We woke up, had breakfast and offered to take David to see a movie he's been asking about since he saw a short preview a few weeks ago: Turbo.

Brent and I talked ahead of time: if the kids could not handle movie theater etiquette, we would simply leave and have a wonderful day together doing something else. Attempting this with 3 kids 4 and under would be a bold move for us.

It worked far better than we ever could have hoped. Mary Louise and David did get a bit restless about half an hour before the ending - but just needed to move around a bit. Everett nursed a little then fell asleep and snuggled into my shoulder for the entire show.

The movie was so sweet as well. The underdog wins - BIG. Being different is so much more than ok - it's celebrated and encouraged. Brent and I grinning ear to ear over the soft downy heads of our babes - teary eyed with happiness. Listening to David and Mary Louise giggle and describe what they saw on that HUGE screen. Everett breathing deeply on my chest. Oh my heart was and is just so full.

Ya'll. We went to the movies with kids for the FIRST TIME EVER!!! How normal!!!

But the day had just begun. We left, stopped at home for a quick change, and were off to the university for some swimming.

I went last week to join there as Brent and I have signed up for a triathlon in a few more weeks. We'll be doing a relay: I am swimming and running and Brent is biking. Back to David's day...

We had the whole pool to ourselves! Mary Louise and David are gaining confidence quickly around water, can kick very well, float on their backs and put faces in while moving their arms. Everett is amazing as well - overcoming apprehension very quickly and attempting to copy anything and everything "the big kids" do.

On the way home, we asked David what he'd like for supper: noodles. (we occasionally get Chinese take out but this time, he wanted to eat there)

A family dinner around bed time - in public- could have been a complete disaster...but it wasn't. In fact, on our way out, 3 people commented about our well behaved children saying they barely noticed we were there at all!!

David was so proud. "Thank you for my special Day Mom! Wub you Daddy! Thank you!" big kisses and plenty of hugs sent our tired little superman off to bed.

Special days indeed.

xo,
Heather

True Stories Thursday

David: Mom! I don't know how to read these letters to make them fit this puzzle!
Me: Well, let's sound them out and find the matches. What is this letter?
David: Umm, uhhh, Duh, Duh, Duh...a Gee!
Me: Think about it David. "G" makes a "guh" sound and "D" makes a "duh" sound. You had it right the first time.

He puts it in the right spot. I cheer and clap. We do a "high five".

Me: Let's do another letter.
D: ok! I want to find the one that goes with the Guh Guh Guh...Grapes!
Me: Ok, well, we're looking for the letter "G" then. It makes the sound "guh" as in grapes. Do you see it?
D: ...
Me: here it is! (I put in in the slot)
D: VERY GOOD MOMMY!!! Good job!! You did great matching the letter and the picture!! (puts his hand up for a high five with a HUGE grin on his face)
************

Mary Louise: (whining)
Brent: Mary Louise. I just asked that you eat what you asked to have. Eat what's on your plate before asking for something else.
ML: But I don't want this! I want something else!
B: Then you shouldn't have asked for that. Just try it. Then you can have something else.
ML: (whining)
B: If you keep behaving that way, we can't go anywhere today. No one likes to be around whining.
ML: Something ELSE! (stomps her feet and balls her fists) you stop being mean Daddy!
B: Mean? I'm not the one whining and not eating. Maybe you should call Mere and Pops like you wanted to and tell them I'm being mean. Maybe they can help you.
ML: Mere and Pops don't like me! I can't call them.
B: What are you talking about? Mere and Pops adore you.
ML: I'm talking about Mere and Pops don't like me when I'm whining. I can't call them right now.
*************

Me: Mary Louise what is wrong?
ML: I feel angry!!! I have my angry face ONNNNN!!!
Me: Well, what can I do to help you find your happy face again? I miss my happy Meesey-pie.
ML: I don't know where to find my happy face Mommy! It's around on my body somewhere...but I can't find it right now.

I love that they can tell me how they feel.
*************

The big kids have fully embraced teaching Everett all they know. Furthermore, Everett has fully embraced the role of "student". It has empowered Mary Louise and David who I've heard, on more than one occasion, speaking softly but sternly to Everett about table etiquette, toy room manners and navigation of the house in general. They demonstrate, he watches and listens, he tries it, they offer constructive advice. It's amazing. The added pressure and responsibility of having a constant audience sponging in all they do has tailored their behavior in such a positive way. My hope is that they look back on these years with all of the fondness - maybe more - that I have for my baby bros.

Mary Louise and David are constantly asking about boundaries as well: Mom? Is this ok? Can we...? Are we...? Will we...? Is this how you say...?  They are spending less time pushing boundaries and more time understanding why they are there in the first place.
*************

And finally:

PEOPLE!!!! WE HAVE A WALKER!!!!!!!

Everett has been taking steps for quite some time - months in fact. However, he typically does so when he's set up - I place him standing, Brent sits with arms open waiting, Everett giggles the few steps in between us and so on.

Last night, Brent walked in and Everett suddenly got down from me on the sofa and crossed 2 rooms to get to his daddy! We were all so proud - possible none so much as Everett himself. He's continued his efforts today. He'll fall and instead of reverting to a crawl, he stands and tries again.

Growing babies, greatest blessings.

xo,
Heather

Needed: My lesson in growth and letting go

Mary Louise and David started going to a Montessori camp today. I called it school (because that's really what it is - but just 2 weeks worth of mornings) and prepared them just as I would for any other new activity or lesson. They were excited - a little nervous - but mostly really really excited.

I have talked to their teacher for months...and by "talk" I mean obsessively emailed, texted and called with obnoxious updates and suggestions regarding the ever changing and constantly developing personalities, dynamic and function of Mary Louise and David. She's a good sport about my helicopter parenting. She doesn't just listen, but actually follows up with exact examples and super descriptive instances where my force fed information might have (possibly) come in handy - then she does one better and tells me how my over zealous hovering is not just ok - but maybe even justified - ha.

I offered to be a "room mom". But, I couldn't shake the feeling that this was just one of those times I needed to step back and let our littles shine in their own lights. Admittedly, I also felt a hefty push from within to take advantage of those few precious hours with Everett and just enjoy a slightly slower pace for a little while.

I brought them over this morning with plans to run while they had school time. I was really excited about the chance to put in a few miles, sweat the good sweat and breathe in the warm sun while sorting through my crazy brain for a bit - clarity with exercise followed by that complete exhale- it is my one of most favorite feelings.

We were the first to arrive. Yeah. Don't think I was all organized and graceful either. I did set out clothes and things the night before - but we still ran late and ripped into the driveway 5 minutes after the hour. Ha - apparently, the other moms were just slightly more frantic than I was so we didn't miss anything!

Mary Louise and David didn't bat a eye and marched right up to their teacher and her daughter and said their good mornings. They immediately made themselves at home - exploring all of the new school props about (the teacher also led their music class and we've had play dates with her family so this was all familiar territory for Mary Louise and David - win!)

I was the one who sort of froze for a bit. Everett looked around and crawled under the carport. The other children and room moms arrived. Everyone did just fine. I stood watching for half and hour - realizing the whole time that our sweet kiddos adjusted so immediately and seamlessly that I had to mentally catch up to their level of comfort.

I told them I was going to go for a run. They stopped, looked, listened, nodded, said, "ok mom" and went right on about their day. It was one of the first times I felt as if I was just there because of me, rather than them. I hovered closer for a few minutes...breathing down their sweet little necks...forcing myself to meander on over to the car and get the stroller set up. I looked back at them. Still fine. Not even noticing. Big kids.

I started out on my run. It felt good to connect with the pavement again.

I remembered having a fuss with my mom after the kids were home (from the hospital). Mom looked at me, appearing bewildered at what I had asked (I don't even remember what it to be honest) - she said, "you just don't need me anymore. You're fine. You can do this. You don't need me. None of you do..."

I started to cramp and kept running - slowing just a tad and focusing on breathing. I found my sweet spot in form and kept going. My legs going a little numb- moving instinctively. Steady pace. I thought of my mom's eyes in that moment...

I was heart broken. I felt I needed more than she could give and didn't blame her at all for the remark. To me, it was just part of her grieving. I just felt sad. Didn't she know? There have been so many times that, as an adult, I felt I needed my mom more than I did as a child (and goodness knows more than I needed her as a teen -*grin*). There has not been one moment - not one instant - that I have not needed her. Ever. Not once. Not wanted her? sure. Not needed...never.

And there it was...clarity.

Everett started a fit and I ended up not only nursing openly on the side of a south Lake Charles road amid small farms and large pick up trucks, but also carrying that stinker under my arm - screaming - for over half a mile. A man working on a tractor offered me a ride - bless him - I'm sure it's not a regular thing to see a sweat drenched flustered mom pushing an empty double jogger while carrying a baby kicking and fussing down the side of a fast paced country road. The man was the teacher's father. It made complete sense that he'd offer a ride - and I knew he meant it. They are that family. Without a second thought before or after, giving of themselves is as natural as breathing.

I trudged down the drive and plopped into the front seat. I didn't want to interrupt the kids - and Everett needed a quiet moment anyhow. I nursed him again and we cooled off awhile. I thought about running a marathon...or a half...or a full...

We ran an errand and came back to see how Mary Louise and David were doing. They were playing with HUGE tired grins.

Loaded in the car, they told me basics about their day. Then David suddenly said, "Mom? Did you have a good run?"

"Yes," I replied.

"I missed you and Everett. But I had fun at my school Mom."

"Wonderful. Would you like to go back tomorrow?"

"YES!!"

And that was that. I reminded myself that needs simply change and develop over time. Physical transforms into emotional, mental, collaborative. The need just shifts. Then I gave myself permission to linger a little longer and recognize that it was for me - that was my "me" moment WITH the kids. Recognize it. Embrace it. Let it go.

Family growing moments. I keep finding myself wondering who really is learning here...the answer, for me, is always the same: all of us.

xo,
Heather

P.S. Grump Grump Everett is teething again - explains his less than stellar road side show.