Monday, May 31, 2010

Variety is...

Whatever it is, it seems a necessary part of our lives here lately. I have found that switching back and forth between whole grain cereals with probiotics is the the current key to keeping Mary Louise and David's digestion on track.

Between teething, digestion, and Heaven knows what else, the 4 of us have gotten very little sleep lately. It sounds good in theory that they are at a weight to be sustained and calm "through the night", that they are getting older and can "cry a little more", that they should "self-soothe" more effectively...and that over a year of not sleeping would be enough time to "get on a schedule". Unfortunately, that simply has not been the case. They make regular progress in all areas. They are far from keeping us up as they did in the beginning when we were feeding them every. 2. hours during their first 6 months (yes. 6 months). But, they are also far from acting (in this area) as "regular 1 year olds". Their growth is still that of an infant. They gain an average of 1 pound per month - this is incredibly fast compared to their full term counter parts. Their appetites are simply amazing - and increasing.

Today has been particularly rough for me. Mary Louise and David have been ravenous the past few days- but not for solids mind you, and this morning's climate was nothing short of frantic. I started pumping every 2 to 3 hours again during the day in an attempt to keep up with their demand. But the fact is, I was barely keeping up before this latest influx. So, this morning, as we were all sitting here at the end of our ropes, I gave in and allowed them to try some whole milk. I was nothing short of hysterical about this decision. I realize how ridiculous that sounds to some...but to me, this is the one thing I have, by the hardest, been able to do for them. Obviously, my reservations were centered a bit more in my own inadequacies than in their health or hunger...

They seem ok with the whole milk really. Of course I am continuing with pumping - I have been able to maintain them on about 20+ ounces each per day. They are also making progress with solids. Tofu has been a success. They've also tried (or played with really) some steamed broccoli and veggie pasta pieces. So, things are constantly changing in the diet arena.

When I gave Mary Louise her whole milk, she took a swallow, made a mildly concerned face, grinned really big while looking up at me, then stuck her finger through the nipple shoving it into the bottle thereby spilling the milk all over. I have to say, it was a little funny - and a much needed comedic break after our (or my) neurotic and stress filled morning trying to pump every. last. drop. I had available with 2 fussing babies climbing my legs.

Mary Louise's milk snafu was after David's complete fumble...I was making his bottle. He was throwing a fit. I was holding him. My last 3 ounces of breast milk was slapped into a brand new container of brown rice cereal. My heart sank. The whole milk saga ensued.

If variety really is the spice of life, I am hopeful for a bland day tomorrow. We've had enough spice here to last at least 2 days I think.

xo,
Heather

Thursday, May 27, 2010

We're goin' places!

Mary Louise and David have so enjoyed their Radio Flyer wagon walker. It was a birthday gift from Mamere and Pop. They walk up and down the drive repeatedly and giggle the whole time.



The video is a bit shakey, but you get the idea. Though David walks at times, he'd much prefer to be the passenger...and Mary Louise would much prefer to be the driver (much like her Momma I'd say...).

We've had a decent week here. I've been walking at the state park daily with Mary Louise and David. We even braved a 1.6 mile trail through the woods!

xo,
Heather

Monday, May 24, 2010

Put your hands together...

Mary Louise is clapping!!! In case you're unaware, *this is, in fact, a 12 month skill. (*said in my proudest mom- laced with a hint of braggart- voice). We're just so excited...


xo,
Heather

Saturday, May 22, 2010

Marching on...

Mary Louise met with her Occupational Therapist on Friday morning. After seeing her wonderful progress, the therapist basically said, "so my work is done here"...ha! I am waiting to hear from our case worker about what happens next but it's very likely that Mary Louise will no longer have that monthly appointment. I'll miss the chat time with her therapist - super wonderful person!- but I can't say that I'll miss the extra check-in or check-up! (and the therapist is well aware that she's welcome to visit!)

This morning was the local March of Dimes. We went, just as we did last year...but last year I had just officially left the hospital a few days before, was in between bouts of mastitis and had quickly developed the habit of white knuckling my cell phone at all times as if my life depended on it (and to me, it did)...

This year, we were able to bring our little ones, and keep Kuylen's special memory in our hearts as we strolled the 3 miles down the lakefront. Of course it was hot, but a nice breeze came off the water and Brent and I just got to walk and chat as Mary Louise and David sort of dozed between "visits" from other walkers who would peak at them every so often. It was really nice - a little difficult - but I tried my best to remain present.

Afterward, we went to a little local plate lunch sort of place for a nice breakfast. Brent and I sat outside, a baby on each of our laps, and talked and laughed and just enjoyed one another. Mary Louise and David helped themselves to more than a few puffs we strategically placed around the table and grinned at the sweet people who stopped for a look. "they're perfect!" one said..."We think so," I beamed. Our sweet babies. Other people really seem just as enamored by them as we are sometimes!

When we returned home, I made a chicken salad and tomato basil soup from scratch and with all fresh ingredients (yumm!). Mary Louise and David tried tofu for the first time...and liked it! We played on the floor for hours while Brent cut the grass, then came in for bath time.

As we each rocked a little one to sleep...for the 3rd time after they got restless...we smiled at one another over sweet smelling velvet soft heads...lucky lucky lucky.

xo,
Heather

Wednesday, May 19, 2010

He gets it from his Daddy...

So, if you're still wondering who David looks like, here are a few photos from Brent's first birthday that Mamere sent this evening. So cute...

Brent's 1st birthday


...and David my darling...


xo,
Heather

Kid's Team follow-up

Mary Louise and David had a visit with the Kid's Team therapists today. This includes evaluations from an occupation, physical and speech therapist as well as their neonatologist.

They are now 13 months (actual) and their adjusted age is about 9 months meaning that if they were born around their due date, they would be their adjusted age right now. It is always the hope that they at least maintain function at their adjusted age level. Mary Louise and David have very consistently been a little above their adjusted age.

Today, they "scored" at about 11 and a half months for PT and OT - in the areas of gross and fine motor skills. In speech (language) skills, they scored at about 9 and a half months as they are not yet specific with their words. (They can say "mama" but they don't necessarily associate that with me.) We are just over the moon about their level of function. The therapists could hardly believe it!

We were assured that there were not really any concerns about their language at this time. They have just made huge strides in gross motor function and it is typical that a baby would make good progress in one area while simply maintaining function in another. So, they are not ready to walk and chew gum at the same time. Having said that, the therapists are looking for improvement in their speech and language skills specifically over the next few months.

The PT and OT therapists were very pleased with them saying that once they are walking, they will "graduate" from the Kid's Team program which is beyond exciting to hear. Once they are at that point, we would (gulp) be on our own for things like jumping, and climbing stairs - gross motor skills that just take time and practice to master. I just can't believe that we are already right there - ready to take that first (actual) step!

Their doctor was very pleased as well. He said how good they looked and was so excited that we made it through the winter unscathed by any type of respiratory illness. As he hasn't seen David since his hernia surgery, I explained to the doctor how much happier he has been since he had his repair. I also explained that once the surgeon saw what was happening with his hernia, that it was in fact involved much more than initially thought. The neonatologist remarked how rare a case like David's was and even said that he'd keep such an instance in mind the next time a mom says her little one seems so uncomfortable. Though we did have a disagreement or 2 in the NICU, I have to say how much I respect and appreciate this doctor - not only for keeping up with the latest in research in neonatology - but for moments like these in which he offers some validation for a mother's intuition - regardless of how far fetched it may be.

We had a little conversation about Mary Louise's constipation issues and as far as her diet goes, there is nothing that needs to change. In fact, the neo said there is little that can be done short of giving her a daily med. He suspects that she has some fissures which are causing discomfort. David had issues with them in the NICU at the end of his stay. After describing Mary Louise's behaviors, he concluded that part of what she is doing is behavioral and we'll not be able to resolve it until she is a little older. He did say that she should grow out of all of it with time though- and that it is quite typical for (micro)preemies.

As far as their size is concerned, the doctor stated that he is confident that "they will not be short" or otherwise scarred buy their extreme prematurity...but it will take quite a bit longer to see if that will be true. They have plateaued a little with their growth - but it is not concerning at this time and they continue to follow their own curve just below the "regular baby" growth chart.

So, that's the run-down for the day. Overall - a good report!! Happy 13 months my lovies!

xo,
Heather

Monday, May 17, 2010

Pearly Whites

From 2010-05-17


First actual photo! See the rest of the album including our family celebration of Mary Louise and David's first birthday below!

2010-05-17


Ma Mere's photos of the same events. The first few are of Brent's cousin's race.

Cindy May 2010


And a few of us having a wild playtime with a HUGE exercise ball - so fun!
2010-05-14


Enjoy!

xo,
Heather

(Avoiding) Hazardous conditions...

And we're back in the LC as of yesterday afternoon. Mary Louise and David have settled in nicely - ate twice their usual share of purees last night and have done very well this morning. My how things can change in a week with these 2!! I think an overview of systems is in order with all of the recent developments...

Respiratory: The babies have done so well. Even with the travel and change in routine, they have not had the least bit of a sniffle nor sneeze. They met their cousin Alex for the first time over the weekend and had a wonderful time playing with a peer! (Alex is 6 months old) Though we are out and about much much more than we were during the winter, we are still quite guarded about Mary Louise and David's person to person contact. Hand hygiene rules still apply as do the "well people are welcome" rules. We are really enjoying the temporary freedom of exploring the outside world. Until flu season begins again...

Cardiovascular: Mary Louise still has a coronary artery fistula. She is asymptomatic as of yet though and we are very hopeful that she will remain that way and this issue will resolve without intervention. Otherwise, they are doing very well. Micro preemies are (in general) at an increased risk for childhood hypertension and cardiovascular disorders, so we are also quite vigilant in controlling the contributing factors that we can - i.e. diet - low or no sodium whenever possible, no meat (for now) lots of fruits and veggies, legumes, and coming soon - tofu, egg yolks about 3 times a week and of course breast milk as long as I can...

Diet / GI: other than what is covered above, I have very recently realized just how fluid their diet is - or needs to be. Things we did a month ago, cannot be done now, etc. Basically, anything that goes into their mouths really needs to be in a strainer. They can now bite but not really chew. They are working on actual morsels of food - but as of yet, can only consistently handle coarsely mashed bananas and avocados without choking. They are loving their yogurt, eating on the go, and loving the autonomy to choose what they do and don't like themselves- I give them choices of puree or finger foods that melt (yogurt melts or puffs) and they choose what they like. They prefer to do things on their own - and on the run. They tried watermelon for the first time this past weekend and LOVED it!! It has quickly become a summer / warm weather treat for our outside time (by quickly, I mean - in the past 2 days - ha). Mary Louise is continuing to make really good progress with her eating. I would venture to say that although she doesn't eat quite as much as David as far as solids go, she is in fact "normal" for her age. She also has a pretty significant-albeit intermittent- problem with constipation so I can't really blame her for seeking out more breast milk and less solids.


Motor skills: hazardous conditions indeed! A little over a month ago, Mary Louise could sit unassisted for close to a minute, David, for less than 30 seconds...take that in for a minute...today, David crawled over to a side table, pulled up, stood on his very tippee toes, and proceeded to grab at a stack of coasters, and fling each one over his shoulder in a frisbee fashion. All of this in the time it took me to change Mary Louise's diaper. He also tried to climb the netting up the back of his cocoon swing during "nap time" and has suddenly become fixated with digging in potted plants (which I quickly moved) outside under the carport. He and Mary Louise can both sweep the front of the fridge (magnets) from their walkers. Mary Louise has begun to stand in her walker when she is ready to get out...in short, I have my hands FULL. They are WILD, they are strong, and they are determined.

So, adjustments are being made all the time. Further baby proofing is constantly underway. And, we are just so tickled that they are doing so well.

xo,
Heather

Saturday, May 15, 2010

Family

Always the most important thing to me. So, when the opportunity arose to pop in on Brent's grandparents (Mimi and Grandaddy), we jumped at it...

We made the short trek (about an hour) to Metairie yesterday for a visit with Mimi, Grandaddy, Ma Mere, Pop, and Auntie Zoo. It was a really wonderful afternoon. Of course Mary Louise was quite timid most of the time, but she did eventually fall asleep on sweet Ma Mere's chest while swinging on the porch swing in the humid breeze.

The babies did very well on the trip over. It seems they are happy as can be for about an hour - it gets a little hectic from there, but it's still doable. When we pulled up at the house, Mary Louise had - umm- quite a surprise for me- and everyone else. In fact, she had enough surprise on her, her clothes, her carseat and in her diaper to make the whole block say, "whoa, ooo, and eww". So, I barely said, "hello," and asked for a towel and warm bath. Mimi, who had 6 children, smiled and directed me to her tub, fought through the smell and kissed Mary Louise on the forehead. Off we went to get fresh as flowers and rejoin the group.

In the meantime, Brent (who met us there on his way to Mommom's) scooped David up and spent a little undivided time with his boy. David, ever the crowd pleaser lapped up the attention and seemed to really enjoy himself in his sister and momma's absence.

We talked, took photos, rocked babies, and caught up on the happenings over the past few months.

Family times always make the best, funniest and most heart-warming memories...even when poop is involved.

xo,
Heather

Thursday, May 13, 2010

Successful so far...

This trip has definitely been a success so far. It's not been without bumps mind you, but the bumps have been small and manageable - even though I'm going it without Brent...Mommom and Uncle Kyle have stepped up and gone above and beyond to help me out and make sure I can get pump time, shower time, walk time, and even a little me time.

Today I got to get a hair trim and do some shopping. Of course I neurotically checked in every hour (I was gone for about 3 and a half) to make sure everything was a-ok. Of course I wouldn't leave until I was sure Mary Louise was ok - after she finally pooped her body weight this morning with a little specially recommended pharmaceutical help (I'm pretty sure the travel and change in routine just put her already so delicate little system into a frenzy). But the point is, I did get out, and I did have a nice time.

When I got home, the babies were (of course) just fine - playing playing playing - all bathed and smelling so sweet. Uncle Kyle did very well at playing babysitter mostly to David while Mommom napped a little with the finally comfortable Mary Louise. Kyle even fed David his dinner - but stopped short of the (from what I'm told) enormous dirty diaper - as umm- that's just not his thing.

So success in our venture out and about has been achieved. This means we might just do it again sometime!

We have a busy day tomorrow as we are traveling a short hour to Ma Mere's parents' house. It'll be so good to visit with Mimi and Grandaddy!

xo,
Heather

Tuesday, May 11, 2010

Well...

I packed up after church on Mother's Day and headed to Mommom's house. We knew the babies and I were making the trip this week and thought it best if Brent were home to help pack and see us off...

The trip went about as well as could be expected. It definitely wasn't easy, but it was far from miserable so I really can't complain. I stopped 3 times. The babies made dirty diaper deposits at 3 gas stations (phew!). A clean diaper, a few puffs and a fresh bottle did the trick every time. In short, my little darlings are growing up and are able to tolerate a little more each day as far as riding in car seats and strollers.

So far, our stay here has been wonderful. We of course miss Brent terribly, but are enjoying the change of scene, miles of tile flooring to fly around in walkers, and extra special attention that only Mommom and Uncle Smee (Kyle) can give.

David is crawling like crazy. Apparently, the new place sparked his interest and he felt his dear old momma was too slow for his liking. So, he grinned, and he crawled, and crawled and crawled as soon as I put him down when we walked in the door.

Mary Louise seems to be having a wonderful time as well. Mommom puts a grin on her face like no other. She has had a bit of digestive trouble since we've arrived though - but we're working on it. She had gotten better at home, but the trip must have upset her rhythm. Hopefully, she be - uhem- cleared out tomorrow and all will be well.

Goodnight to all and big hugs and kisses to our proud papa Brent.

xo,
Heather

Monday, May 10, 2010

Photo op reminder

Those who wanted to purchase photos from our last professional session, the gallery will be taken down tomorrow, May 11th. Just a reminder!

The link is http://www.lindseyjanies.com/

Go to the client section and find their photo and click on it. It will ask for a password - leblanc (I think but call or email me if you need it again).

You can choose what you want and purchase from there.

xo,
Heather

Saturday, May 8, 2010

post #350 - Happy Mother's Day!

Mother's Day last year...

I held our sweet Mary Louise for the very first time - just short of a month after her birth.

This is David around that time with Brent's hand...


He had had his emergency abdominal surgery. He was able to tolerate the occasional touch - but was otherwise very fragile and too unstable to tolerate even room lights many days.

Their doctors gave them only slightly more than a 50% chance of survival at this time last year. That's survival - not considering quality of life or functional limitations. But we all remained as hopeful as we could. We loved them. We enjoyed each special moment we were given - always so keenly aware that it could all come crashing down any second. Their fragile balance could be thrown just by rubbing their backs or moving them to a position they didn't particularly care for.

We watched amazingly attentive staff learn our babies through and through. They knew that David didn't tolerate even a hint of a dirty diaper, that Mary Louise liked her back more than her front - but frequently changed her mind. David loved his thumb, his pacifier, and the dark. Mary Louise demanded food exactly on time. They knew. They knew all of it. We were all mothers to our tiny babies.

Meanwhile, Brent and I leaned more than ever on our parents. Our mothers who had so carefully taught us all they could, thinking and re-thinking each life lesson, hoping they wouldn't forget something, yet knowing that preparing us for every situation was an absolutely impossible task. So instead they gave us character, integrity, they taught us respect (sometimes by the hardest). They passed on unwavering strength, morals, amazing and intense appreciation for all things and all people. They (our mothers) created the opportunity for us to gain all of this and more. We had to only choose to soak up the knowledge.

Our mothers had to sit back and watch as we struggled to make our lives and choose our paths on our own; for to be successful as a parent is to create a successful person - however success may be measured. It is one of the only "jobs" in which your product that you put absolutely everything you have into - that you have given of yourself in a way you never. thought. possible. -that child, will walk away one day. They will stand on their own two feet, make their own mistakes, reach their own goals.

Then our mothers watched as we became parents...and they couldn't fix any of it. Our mothers sat very quietly and waited with us. A firm hand on our shoulders. We knew they were there, our beautiful protectors.

Brent and I have been so incredibly fortunate to have our families to support us, to offer advice, to offer a helping hand when a psychotic new mom wouldn't let anyone else in the house! We have had more than amazing role models and have been unfortunately fortunate (if that makes sense) to have people surrounding us in such a difficult time that have in fact been through terribly difficult times themselves. They offer a perspective gained only through perseverance and experience.

But our mothers...our mothers have held us and helped us to endure more pain and heartache than any mother should ever have to watch their child endure. They have offered their strength when we have had none, their love and encouragement in times we've felt the situation to be as close to hopeless as we could stand. They were there too, cheering us on in our smallest and largest of triumphs...and they continue to be here today, our biggest cheerleaders, supporters, our mentors and examples of such love, trust and bond that can only be shared between mother and child.

A shout of thanks to ALL of my (and our) wonderful mother figures- those who have cared for me, those who have cared for my family- and especially, my mother. A best friend who can truly irritate every fiber of my being and simultaneously make my soul smile - I thank you, Mom. May Brent and I fumble through parenthood half as well...

xo,
Heather

Friday, May 7, 2010

Another PT Friday

Mary Louise and David are just coasting along in their monthly PT sessions. For the first time, Mary Louise MET ALL OF HER GOALS!!!! David did very well too - is making wonderful progress with crawling, though he'd still much rather just move to the closest piece of furniture and pull up to a stand.

So, with Mary Louise, we are to continue on with encouraging her to walk. She has definitely mastered crawling and pulling up. She is very stable when walking behind her push walker now as well. She has just started to let go of things and test out walking while holding on with one hand - so not long now...

David is still begrudgingly crawling. He does it when absolutely necessary - but at least he doesn't just lie on his back and fuss now. He has gained muscle tone and tissue in his chest and shoulders and is beginning to do so in his legs. He works very very hard at everything he does so I know it will not be too much longer before he is neck and neck with the wild Mary Louise.

A quick update - but the babies are outside with Dad and we're having a bit of family time - post pump break. Hope everyone has a good weekend!

xo,
Heather

Wednesday, May 5, 2010

12 month check-up

Mary Louise and David visited their friendly neighborhood pediatrician today for their 12 month check up and immunizations. They also had their hematocrit and hemoglobin checked to ensure appropriate iron stores. It was just fine- even without the awful iron drops that we just stopped giving them over a month ago when the constipation they at least contributed to was getting over the top ridiculous.

I requested that their immunizations be split up rather than bombarding them with so many new things all at once. Don't worry, they will be properly immunized eventually. I just want it to be as safe and uneventful as possible. They received a booster today of the DTaP and their first Varicella shot. So, we waited on introducing MMR. It will be started at either 15 or 18 months.

The doctor was pleased with their growth - still not on the growth charts of course, but they are following their own curves just fine at just over 2 feet and 12 pounds 4 ounces and 13 pounds 7 ounces. He was also pleased with their development and thought it funny that David is just barely crawling, but has no issues pulling up to a stand. So, no complaints - they're doing just fine.

They have tried egg yolk this week. Although they aren't too keen on plain bits of it, I use the flaxseed oil to make a smooth paste with it and mix it in fruits and veggies and they don't seem notice.

In insurance news (no, the issues with insurance never end in this house), Mary Louise and David have been deemed developmentally disabled due to their size and secondary to their extreme prematurity. This makes them eligible for disability Medicaid. So, under the Family Opportunity Act, we have been accepted into that program until March of next year. We pay a small premium, and they keep their Medicaid benefits. Since Mary Louise is still eligible for an employee group policy, she also has that. Because David is ineligible, we don't have to carry private insurance anymore for him!!! This means I have a decent bandaid on the situation until March of next year.

If you're wondering about health care reform, when the plan says "immediate" it actually means "6 months". So any "immediate" action of the new health care bill will not be in effect until September. So says the state insurance commissioner's office. They currently can't answer any of my questions because apparently, the literature of the bill has "not been sent out to individual states yet". So, no one knows what the thing really says. So September - that is also when we hope to see if our group plan will have to disregard the lifetime cap previously imposed, and pick David back up (please please please).

So, that's the story for now...

xo,
Heather

P.S. Happy Birthday to the Lizzie dog! 8 years old today!

Saturday, May 1, 2010

Babies and Blueberries

Mary Louise and David had a wonderful time with fresh blueberries yesterday! It was rather gloomy weather here and somehow rather gloomy weather is MUCH better tolerated outside than inside. So, out we went (under the carport anyhow). I filled their strainers with blueberries and my little munchers took off in their walkers nibbling all the way.

They had a small first as they were wearing shoes! Soft leather booties to be exact. The booties have been stored away for months as Ma Mere sent them during the winter. I must say, LL Bean baby models must be mammoth! These are 0 to 6 month size and Mary Louise and David still have quite a bit of room to grow. Well, I suppose I should keep things in perspective, in truth, I'm really unable to readily picture a "normal" 1 year old...Anyhow, David has stubbed both of his poor big toes in his zeal to zoom in his walker so the leather booties - very cute- alleviated that issue.

So, they had a grand time eating almost an entire pint of blueberries - along with half of an avocado, a serving of whole yogurt, a serving of pear puree' with flaxseed oil, a few tblsp of oatmeal - oh and their regular 20 ounces of breastmilk. For dinner, they had sweet potatoes and the rest of the avocado. Mary Louise is doing better all the time. She is up to about a quarter of a serving of yogurt, still loves any fruit or veggie fresh and raw, and she is definitely queen of the sweet potato.

After showing themselves in blueberry juice, they went into their baby pool for a bit of nakey fun before bath time.

It was a great and gloomy afternoon!!

2010-04-30


xo,
Heather

Oh - and P.S. Mary Louise's FIRST tooth seems to be coming in just fine...her SECOND one is too! (that would explain her late night wild woman antics right?)