Sunday, July 18, 2010

Birthday boy!!

Brent turned 35 today!!! (well I suppose this post will show up as the 18th - but his birthday was the 17th). In his honor...(drumroll)...for the first time EVER...we (throat clears)...spent the night O-U-T!!! (dun dun dunnn)

Brent has a very good friend who got married on Friday night. After a bit of planning, and a bit of help from Auntie Zoo and Mommom, I nervously booked a room (a master suite to be exact) at a nearby bed and breakfast so that we could go to the wedding which was about an hour and a half away from Mommom's house, and not have a long way to drive afterward.

It was a very long day for us. Mary Louise and David had eye exams in New Orleans in the morning which went a little like this...appt. 9am. On the way there, we hit nasty weather and bumper to bumper traffic. We arrived at about 9:15. They said it was no problem. We were called "into the back" at 10:30. We actual saw the doctor and were examined at 11:30. We left the parking lot after a 15 minute pumping session at 12:30. Oh yes. With 2 15 month olds, we endured a 3 hour eye appointment. It was, in a word, difficult. In another word, exhausting.

The exams themselves went well - or the findings did anyhow. Mary Louise was so bruised and upset by the actual exam that she looked like she'd been in a prize fight when we left. David was so tired that by the time the doctor showed to look at him, he was fast asleep - which is great for ANY exam BUT an eye exam right?

Anyhow, Mary Louise continues to show no signs of nearsightedness or farsightedness. No crossing nor wandering. Her ROP has not returned. The surgical sights appear to be holding and her retinas "look good". David did not receive such glowing reviews, but we have a stay of operation for now. His left eye has been starting to turn out and wander a bit. It is especially - and sometimes only - notable when he is very tired or just waking. He shows no signs of astigmatism, nearsightedness nor farsightedness. But he did show a little bit of crossing. Right now, glasses are not indicated and the best route to "fix the problem" would be surgery. However, as the issue is non-imposing and very mild as of yet, we are (ha) keeping an eye on the situation for another 6 months. Should things worsen, we will bring him back immediately (easier said than done of course) for possible patching or eventually, surgery (blegh - things are never quite done are they?).

From the appointment, we had a quick lunch with Uncle Damon who works very nearby, Mommom took the babies back with her, and we (Brent and I) were off on our 1 night excursion...

We had a really nice time. The wedding was beautiful - and the couple was gorgeous. When we arrived at the B&B, there was chilled wine and fresh strawberries, cream, chocolate, crackers and cheeses waiting there for us. We ended up being the only ones in the house overnight and the manager opened all of the rooms for us to see!

We smiled as we looked at each other, had the gift of time for the first time in almost 2 years, and laid down to (you guessed it) take a nap...followed by a night bubble bath in the clawfoot tub for me! I dawdled and dilly dallied getting ready - such a luxury. I took extra time with my hair and put lotion on my knees and heels (spoiled once again)! We leisurely made our way to the wedding, the reception, and back to the house for a quiet night in what turned out to be an empty house. We woke at 6:30am. Go figure...our only chance to sleep in and we are wide awake and ready to get back to our little ones with sun up.

But, we had a really wonderful time just - well - spending a bit of time with each other, chatting, giggling, and enjoying one another. We had a yummy and HUGE breakfast and made our way back home. Mommom and Auntie Zoo did well overnight - as evidenced by their exhausted smiles and by the fact that they didn't say, "well, I'll never do that again" upon our return. (We'll take that).

Many thanks to everyone who helped to make Brent's birthday really special and to our precious little ones for behaving as best they could in our short absence.


Saturday, July 17, 2010

Back in action...

So much has been happening over the past week that it's making my head spin! - I can't even make my thoughts slow enough to form coherent sentences - much less blog - but nonetheless, I'll give it a go and see what happens...

Last Sunday (yes, I still have thoughts of LAST Sunday in my head which in a way is nice because I usually can't remember what day it is at all - and certainly can't put my finger on a week ago - but...) Mom and I took the babies to church. It was the first time I've made it to church with them - ever. I walked in - familiar smells of furniture polish, incense, old wood, perfume, wine - like a second home. I grew up having chapel there every week. I went to church there most Sundays as a little tag along with my grandmother. Brent and I were married there. My dad's funeral was there. My baby shower, Mommom's funeral, and so many more in betweens and little happies as well and huge life changing events centered around this sacred ground. I was in a word...overwhelmed. I did well until the end though - until out of no where, I had a moment. It felt so. wrong. Wrong to be there cradling my babies proudly without my dad or grandmother to share in the glory. Wrong to have a piece missing as my little Kuylen couldn't share in the ooo's and ahhh's of the day. Unfair. Aching. Just wrong. My heart was beating and my head was spinning. A panic attack of sorts. "Just breathe," I thought. I got through - was totally exhausted, a little embarrassed and just ready to go.

I'll try again tomorrow.

Much of the week is a blur. I left Sunday afternoon to return to Lake Charles. The ride went well. The last hour was a bit hectic but not horrible. Mary Louise and David had physical therapy on Monday afternoon. It went well. We are really just waiting and watching for them to walk. Their balance is greatly improved as compared to last month. I really believe that Mary Louise can walk - she just won't let go just yet. When she's ready, she will...and boy will I have my hands full then!! David is able to stand independently for about 10 seconds and counting before easing himself down to a sit. He has started to try to take a step - but hasn't quite gotten there yet. Slow and steady, that little one continues to pleasantly surprise everyone with his strength and determination to do things "by myself!!"

Our house is still for sale. The viewing traffic has slowed but we remain hopeful. We WERE set to close on the new place on Friday...ah - the fiasco...we heard from the bank on Thursday at 4:30 that there were significant issues with the appraisal. In short, we are unsure at this point whether the purchase of the new house will work out or not...but I'll keep everyone posted of course...


Friday, July 9, 2010

A boy and his froggie

David has never had a proper "blankie". Though he was rather attached to his Wubba Nubs for awhile, we can certainly leave them at home and for the most part, he's pretty much given them up altogether. He does suck his thumb upon occasion...but David is truly 100% attached to his NICU froggies. You might remember these mentioned way back when the little ones were just really starting to grow in the NICU. They were so tiny when they were born that we had to wait awhile to even get froggies. But eventually, they were put in with the babies as a comfort and positioning aid. Essentially, they are a large bean bag with little legs and on the tag, a name "Fredrick T. Frog" hence we call them "froggies" or "Freddy Frog". Admittedly, at that time, I was rather attached to the froggies as well. In the NICU where we were, a froggie given is one that is for that particular baby only. I was allowed to take them home every few days for a wash and would care for those little things as if they were - well, my kiddos. I loved to smell them, I loved to hold them. I loved the fact that I had an "assignment" and the fact that the nurses always smiled and said, "thank you" when I brought them back. It gave me another purpose when I needed it most. Before I could hold them, before they could breathe on their own, before I could even open their little isolette doors for more than a few minutes because of devastating temperature fluctuations, I was..."froggie cleaner".

This is David on his last day of intubation - so at about 6 weeks old - snuggled up with one froggie around his head and one over his legs to offer weight and simulate womb life. The nurses all knew what side he liked, and how he wanted his froggies positioned just so to comfort him best - finicky little old man that he was - wise way beyond his few precious days.

David today cannot - and will not- go for more than a few hours without his froggies. He's gotten particularly attached since he's started teething as they offer some relief when he chews on them. He does not go to sleep without one under his arm. I've actually put him down without one once and was met about a half hour later with sheer panic and a tantrum that resolved only when I tucked Freddie in with the little guy in charge.

But, one of my favorite stories so far about "Frederick T. Frog" is from just this morning. I was clinging to my last few moments of peaceful sleep, listening to David starting to stir. He began to giggle. He has the funniest laugh - a little, low voiced "he he" and a smirk. Then suddenly, I had a froggie slung across my face and opened my eyes only to see David's mouth - and 2 big front teeth coming towards my nose. Luckily, he caught the edge of his froggie and I escaped with just a little drool across my brow. He was just wild with laughter after that - as if he'd played the best joke ever on me.

Mary Louise stirred a bit and snuggled up to me as she opened her eyes.

They slept a bit better last night - and apparently, it did them some good. We went swimming today with Mommom and after their initiation with MaMere, they are completely in love with the water. They giggle, grin and kick and even chase toys. We play "motorboat" over and over and they are slowly getting more comfortable on their backs. We really had a grand time!

No word yet on any offers for the house though we are still very hopeful that it will sell quickly. We sign on our new house on Thursday!!! We are just thrilled - nervous of course - but really excited about the move and the prospect of getting settled into a place we just absolutely love.

I've been thinking tons about sweet Kuylen lately...though he's really constantly on my mind, I still have periods that are more ummm - intense- than others. Nothing to say about it really...I just wonder if I'll always see three wee ones toddling about instead of my 2 very precious bebes...


Wednesday, July 7, 2010

To Grandmothers' House We Go!!!

Bouncing back and forth between Mommom's and MaMere's has been quite an experience! We've been on the (Gulf) Coast for almost a week with Brent's parents - the babies' first visit out that way! It was really wonderful. Exhausting of course - but wonderful.

A week of firsts...
Pops and MaMere *graciously hosted us in their home (read as *graciously allowed us to absolutely invade and take over their home) and without so much as the batting of an eye, watched Mary Louise and David explore every. single. nook. and. cranny. of their space. Mary Louise went "shopping" (tore up a Pottery Barn Kids magazine) while David played with Pops' turkey call. They rocked and slept in hammocks in the serenity of the back porch. They sat in laps at the table while we ate - they are so so interested in EVERYTHING on our plates! (So much so that we're pretty sure Mary Louise stealthily removed and ate a bit of Pops' drop biscuit one morning!).

On the 4th of July, we (MaMere and I) took Mary Louise and David SWIMMING! I was so excited to finally get them in "the big people" pool. Mary Louise did very very well -took to the experience right off kicking and splashing, playing with her crab bath toy...she even put her face in the water...more than once! David was pretty cautious at first - true to his careful, passive soul. He clung to me tightly with a little worried look for quite sometime. We took things very slowly, and he eventually warmed up to the idea and started to kick, sat on the side, played, and splashed...he too put his face in a few times - on purpose! We really had a grand time - and look forward to "fwimming" again soon. (photos coming soon)

Another first - Mary Louise and David have officially tried, liked, and agreed with eating toast! They split an entire piece of whole grain (crusts cut off of course) 2 mornings in a row. In addition, they downed some fresh fruit - peaches, nectarines, blueberries, and watermelon - a bit of yogurt, and their trusty bottles. All this while cutting a ridiculous number of teeth! - so much that I've actually lost the official count! Poor David's bottom gums feel like there is pea gravel stuck just under the soft tissue...Mary Louise's tongue is working overtime trying to feel and rub the tiny new treasures growing inside of her mouth. They really are doing well with it all - David is biting anything that doesn't bite back (so Mary Louise is out) while Mary Louise tends to want frozen wash rags, and just about anything else nice and cold.

The car rides overall have been much easier than they used to be. I can make it just over 2 hours with little interruption if I time the trip around the beginning or end of nap time.

In walking and talking news...Mary Louise seems to refer to David as Da Da (with a long "a" sound) while crawling after him or looking for him. Of course it's open to interpretation, but I like to think she's starting to put it all together. She is also a HUGE fan of "Peek a Boo" and covers her little face again and again with the nearest blanket or wash cloth only to slowly reveal her enormous grin as she waits for someone to say "Where's Mary Louise?...THERE SHE IS!!" David is also catching on to the game - though he'd much prefer you to do the holding of the rag!

Mary Louise seems to have mastered walking while barely holding on to one finger. Her balance has improved immensely and she's walking with her heels down finally (they both started to toddle high on their toes as they don't weigh very much and the therapists explained that the toe pressure provides them with more feedback than would walking flat-footed). David, again, is still on his toes, but does walk some holding one hand...though, again, he'd much prefer you do the work and just carry him darnit! (ha - sweet boy, Mr. Opportunity).

They both absolutely adore their Radio Flier push walker wagon and I swear can play with that thing for hours. They take turns riding, they put their toys in and push them around, they try to climb in it - and out of it...

...and a bit of reflection and soap box time (this is your fair warning to stop reading if you hate my droning on)...
It's truly amazing to think of how much has happened - and how far they've come over the past year...last 4th of July, Mary Louise was being air lifted to New Orleans for eye surgery. We still didn't know if she'd come home with extra equipment, if she'd be blind - or have damaged vision - we didn't know if she could hear...David was still a very tiny 3 pounds and quite fragile. We were just starting to take him out of his warming bed for longer periods. I was frantically driving the nurses and staff at the new hospital batty with pumping them for information - and just trying to get in to see my little ones. I've since learned that many parents aren't able to visit so often - I've heard some say they are afraid to, don't know what questions to ask, don't understand what's going on and fear getting in the way. I did have vocabulary on my side - I've always said that the language of medicine is all it's own. However, I hate to think that a parent would feel so out of place visiting their own baby that they simply would stop showing up. So...if it helps - a pep talk (again)...

You serve a purpose. Your smell, your voice, the sound of your heart...these are the only familiar things that little one has. Your touch and soft words may be the only truly tender moments that baby has in the NICU. There are gentle staff members - amazing ones who take their time to ensure the most comfort possible during procedures and therapies...but these comfort measures are nonetheless a means to provide treatment. You have no motive other than love and comfort. No one else can provide such.

You are in charge of your little ones' care. You have the right to make decisions and ask for appropriate guidance and explanation to do so. If you don't understand something, ask for repetition, or a different explanation. When that is done, repeat it back to the staff person to ensure understanding. Ultimately, everyone has the same goal...get that baby home as healthy and strong as possible.

You can (all) do this.

I hear all the time, "I don't know how you do it." Thank you...but I'm not that strong, I do get frazzled, I do need breaks, I'm human for goodness sake. BUT I have 2 babies who have struggled and fought to be here with me and one that gave his all just to meet his family here for a brief moment. Keeping that in mind...looking at them and all of the vast sea of possibilities they hold...that's how it's done. We're all taking one step, one brief moment, at one time.

Even on the hardest of days - on our darkest of NICU days - I somehow mustered up the courage to say "thank you" to them for hanging in there with me- for offering just one more day of precious memories. I am so privileged. This is so worth it.