Tuesday, September 29, 2009

up all night

So the babies have collectively decided to go back to day one with their sleeping habits...David is (I think) going through a growth spurt as he wants to eat every 2 to 3 hours or so. By the time I get him somewhat squared away, it's usually Mary Louise's turn to eat - but then David starts fussing again!

He's been quite uncomfortable, so it seems, and I believe he's having some issues with his digestion. His reflux has been giving us some trouble once more - spitting up after every feeding - and if you're wondering, we can't just increase the amount of the feeding with him during a growth spurt as he just can't take in the extra without spitting it right back up. I've spoken to the doctor about it. He gave us Reglan to use in addition to his Zantac (despite my weak protests). I tried 1/2 dose twice a day for 2 days. It worked wonderfully for the reflux but did no favors in the personality or gas departments. The doctor said he didn't see why it would make his tummy upset. Nonetheless, he has definitely had the rumbles the last couple of days. He is also amazingly grumpy - seriously, no kid should be this stressed. So, I've stopped giving him even the tiny doses of Reglan and gone back to just the Zantac. However, I am allowed to give that 3 times a day. It seems to work a bit better.

I'm also sort of wondering if his inguinal hernia is causing some of the trouble. I have, however, been assured by more than one doctor that that shouldn't be the case. I just know that when adult men have them, they sure aren't real happy about their -uhem- situation. His is rather large (has gotten bigger recently) and I can't imagine it's comfortable - though that's all he's known really.

We've been working hard on their exercises, stretches, cooing, and eye coordination. They are doing well (in my opinion of course) in all areas and seem to be mastering some of the required 3 month skills. I still have to be really careful with our little David as he just seems to get overloaded with noises and too much commotion. He calms quite easily if I can just get him in dim lighting and quiet for a few minutes though.

Sweet babies, they've been through so much and are trying so hard. Their beautiful smiles melt my heart. So so lucky...

Saturday, September 26, 2009

David's Hall of Fame

David can hear, David can smile - upon occasion -and of course, David loves his daddy...

Just a few favorite videos and photos from over the past week or 2!

sept 09

The many faces of Mary Louise

Mary Louise has been quite the entertainer lately...

the many faces of Mary Louise - sept. 09

Don't worry, one of David is coming - I am doing this in between rocking, burping, nursing, cleaning, pumping, napping, eating and drinking! I'm on it though!

another bacteria update

The neonatologist got back to me and said basically the same as the pedi. Watch them closely over the next couple of days. He also said that prophylaxis in this case would likely be ineffective. The babies have been acting ok - just a little fussy - but no more so than after their last shots. Still no fever or any others adverse reactions or symptoms.

What a nervewracking experience. After all we've been through - the possibility of mom doing babies in with a tiny dose of Tylenol is just too much. I keep saying it but in this case, it begs to be repeated...seriously, I couldn't make these things up if I tried my hardest.

I had to smile - the neonatologist's email was infused with phrases like, "I'm sure you already know" and "as I'm sure you have read" and "just watch them - like you always do". After dealing with me for so many months - he knows my reaction to things like this so well.

Brent is going to north Louisiana for a triathalon tonight. The race is in the morning. I got the ok from the pedi to go with the babies to a race or 2 as long as weather permits. (it is outside is really the reason for the permission) However, as this one is the day after immunizations and requires a hotel stay, I thought we'd wait for one closer to home. It's exciting though - the possibility of being able to see Dad go! Auntie Zoo has come to the rescue once more to help me with the little ones while Brent is gone.

Much luck to Brent!!! XO from mom and tots!

bacteria update

it's 2:30 - no fever / no changes

Friday, September 25, 2009

Pedi on call

The pedi on call recommended that we watch the babies for any changes in health status but he does not anticipate a problem as the contaminant was found in the raw products used to manufacture the final ones.

He also said not to give them any more Tylenol and to destroy the container we have. Need I say it? Thanks, ass.

Oh believe it!

Ok - a quick run down of our current crisis...

The babies had their 4 month shots today - went well. Dr. said I could give Tylenol for discomfort and or fever. Babies came home, legs seemed very sore post hour or 2 nap they were screaming in general but particularly if their legs were touched - or even brushed while holding. Gave the 2 their recommended dose of Infant Tylenol, fed them when they finally settled down, put them back down to rest - they seemed wiped out after their day of excitement.

Checked my email...

Got a notice from another preemie mom about a recall on - you guessed it - Tylenol products. Our bottle was on the recall list. Panic (on my part) ensued. Frantic, I called Tylenol as the recall said only "a bacteria was found". They told me it was burkholderia cepacia. I looked it up - effects immune compromised (aka, our babies) and CF pts as well as some ICU pts. Contaminant is found in soil, on hands and on contaminated medical equipment - esp fluids. It tends to rapidly attack lungs. Panic level increased.

Phoned the on call nurse for our pedi - she phoned the on call pedi. I emailed the neonatologist. Waiting to hear back from the on call pedi or the neo. Wish they would hurry up...

I have heard from the on call pedi once so far. He is supposed to call back shortly.

Will keep you posted.

Here is a list of the recalled products...

Wednesday, September 23, 2009

Her little heart is blessed

So, I asked a few weeks ago for blessings for our little Mary Louise's heart, I should have known that our army would pull through. Major triumphs to date...1. 5 days with our little Kuylen, 2. oh wait - lest I forget being allowed 4 unexplainable weeks on bed rest with moderate to severe preeclampsia and being allowed to just barely cross the board into viability and therefore give our little ones at least a remote chance at survival, 3. did I mention 5 days with our little Kuylen?!, 4. Mary Louise and David - only 1 infection each - both considered mild by NICU standards, 5. 2 babies home - barely medically dependent - developing beautifully!, 6. MARY LOUISE'S HEART IS OK!!!

So we went to the cardiologist today - Mary Louise and I did. They did a 12 lead EKG again and another echocardiogram to check any progress made in the PFO arena and to also check her pulmonary pressures. Her PFO is estimated at being less than 10% open!! Her pulmonary pressures were a little below high normal (and that was when she was kicking and moving around on the table!) She was amazing! The doctor came in to talk to me and said (and this is a direct quote), "I have good news!" Oh my gosh! I've waited so long to hear that simple phrase! He was pleased with her progress and weight gain and is allowing me to taper her oxygen to half days right now. Saturday, we will take her off of oxygen completely and see how she does the rest of the weekend. Monday, I will have a follow up phone call with the doctor and if she is continuing to do well, she will be weaned / taken off of Lasix. We will see how she does from there - keep the O2 supplies at our house for awhile just in case she relaspes and have her re-checked in office in about a month.

This news couldn't have come at a better time as my sweet Mary Louise has just about had it with her momma shoving tubing up her nose all the time. She came home and took a very long nap - as if she hadn't slept for days (which, P.S. is not true - she's actually been sleeping quite well).

Now, that's the good news - but as I said, we must not relax too much. The good news was followed by, well let's just call it other news. Mary Louise has a coronary artery fistula. It is rated as very small. It is an opening from the coronary artery which supplies blood to the heart muscle. The opening causes blood to be pulled from the muscular supply and sends it to her lungs. The blood leaking to her lungs is a negligable amount as far as the pulmonary system goes. However, the concern would come if the fistula would grow and in effect steal more blood from the muscular circulation as the supply to that area is very small to begin with. Having said that, the doctor feels that the location of this fistula will allow the hole to close rather than grow larger. It is expected to get better and even disappear altogether over the next couple of years. So, he is going to follow her every few months or so- and then every year until her condition resolves (hopefully).

Congrats to Mary Louise for her steady progress! She was 7 pounds 10 ounces (umm - dry diaper and no clothes) today. She was so well behaved - grinning and wide eyed with everyone there. Then she fell asleep immediately when we got in the car.

Thanks to Ma Mere and Pop for giving me time to muddle through the post office and go and get my flu shot. Hats off to the guy at Walgreens for giving the most gentle shot ever!

Thankful for our countless blessings.
XO, Heather

Tuesday, September 22, 2009

Umm - do I smell pancakes?!

So, to update on the lactation situation. I have been in touch with a lactation consultant who works at Children's Hospital in New Orleans. She seems to be up to date on research and quick with a response. She recommended Domperidone after going through the gambit of nutritional and herbal supplements with me with minimal success. She told me that at 4 to 6 months, many women experience a significant hormone fluctuation - incluing a possible drop in prolactin. She thinks this is what happened to me (umm - because I'm awesome like that.) So, thanks body - amazing - don't give me a break at any time - I might get too excited and take something for granted. ha.

So, domperidone...I phoned my doctor for a script. He'd never heard of it - go figure. Why had he never heard of it? Brace yourselves...it is not FDA approved. Ok - before utter panic sets in, may I just point out exactly how many things people take, eat, or spread over their bodies daily that are not FDA approved - this includes multi vitamins, herbs, etc. Now, think about all the things that the FDA does approve that are known to do harm...Ok, this is not about politics or a rant about the FDA - it is only about whether or not Domperidone is right for me.

I posted questions about it on the preemie mom forum I follow - all positive repsonses. I phoned my old roommate and very good friend about it - she took it in an effort to breast feed her son - positive feedback there too. But the real kicker (other than the unconditional recommendation by the lactation consultant?) The American Academy of Ped...recommends it OVER Reglan for it's ability to treat similarly without as many side effects - and without crossing the blood brain barrier.

I looked at the research sited by the FDA. There was a 1985 study done on continuous IV use of very high doses of Domperidone in Chemo pts. during their treatment. The patients had kidney, liver damage and hypokalemia (low potassium). 2 patients died of cardiac arrhythimias. The FDA shot the drug down.

It is now bought by Americans from Canada - with a script - or from the South Pacific - without a script.

Sound sketchy? I totally agree. But considering all of the research and feedback I've received, I feel it may be my last hope of improving my milk situation - it has increased some, but not near enough.

So the pancake thing - I have been taking Fenugreek, Mother's Milk Plus, I made a double batch of those cookies, I am continuing water intake and increasing the protein in my diet. The Fenugreek makes you smell like maple syrup - or Indian food - whatever you rather. At any rate, I taste pancakes all day long. I drink juice with Brewer's Yeast in addition to eating the cookies (umm - P.S. it is totally disgusting!). I take a nap every day and walk outside most days. In fact, there is really not a move I make without hoping it will increase my supply.

So, domperidone it is - I'll have to wait a couple of weeks for it to come in though. We'll see, I'll keep you posted.

In other news, Mary Louise is 7 pounds 13 ounces today - though her weight was done with her diaper on. She has a recheck with the cardiologist tomorrow morning.

Ma Mere and Pop are here to sit with David during the appointment. He is 6 pounds 6.5 ounces as of yesterday.

That's it for now!

XO, Heather

Sunday, September 20, 2009


So it's 3am. I am up pumping while my ever patient husband feeds the little ones. David has latched on a couple of times today and done well. Mary Louise the same. However, I still don't feel completely empty after letting them latch on each breast for upwards of 30 minutes a piece - and they are still suckling after all of that and attack a bottle when offered so I assume they just aren't efficient enough yet. They seem to get a good seal and definitely get some milk, but obviously not enough to fill their bellies.

Anyhow, that is NOT the point of this post. I thought my pump was going out a little while ago. UGH!!! I was sitting here thinking, hmm, I do believe this thing was stronger earlier. I check my tubing connections, the diaphragms were in place. I have been told many times that with my extensive usage of this Pump in Style that there is risk of the motor just giving out. If that occurs, I can call the company and have them overnight a replacement motor as long as the pump is still under it's one year warranty. So, as my not so old friend seemed to be petering out on me, my heart sank. I knew I had recourse, but tomorrow is SUNDAY!!! Frantic, I tried to come up with a plan B. I told Brent what was going on - this is a crisis in my book! I did the math on the hours until Target opened and cringed at the thought of shelling out almost $400 for a new pump to use in the interim. But I just can't have a reduction in suction and I certainly can't wait until Monday for something to happen - even if the hospital does have one available, no one will be able to get it to me until Monday!!

Ha - Brent finished feeding David while I tried to think things through and my sweet Mary Louise happily - and agressively breastfed. Her latch on seemed extra fierce as her momma sat in surprise, and utter panic in the face of the newest fiasco unfolding. Brent came and looked at the pump, chescked the cording, and unplugged the (dead) battery pack that I'd forgotten I'd switched to earlier and plugged the darn thing into the wall. Voila, crisis averted. Thank you Brent for uhem "fixing" the problem. Thank you Medela for making an iron tank of a pump that even I can use and abuse for months on end. I have reached a new level of moronic behavior.

Damn I feel like an alarmist.

Good night. Love you Brent and babies!


P.S. After breastfeeding both babies for a bit, I've pumped 5 ounces!! Hopefully my supply will continue to improve?!

Friday, September 18, 2009

A MUCH needed visit...

The babies and I went outside under the carport as it was (THANKFULLY) cleaning service day! They come every other week now. We sat and played - as both play now!! and napped - all 3 of us napped actually - and ate - well them more than me. Ha - all within a short 2 hours - that's alot I'd say.

Anyhow, as the ladies were finishing up, I started to bring the babies and their swings inside. I was shaking out the dog beds and admiring the beautiful day outside - not too hot, with a really nice breeze. Blue skies overhead and warm sunshine beaming down - it was getting warmer as it was 11am. Then I saw it - a sweet little lady bug flew to me and landed right on my chest. It sat there for a moment. I said, "hello" (umm because I can actually talk to a brick wall if I'm in the right mood so a conversation with a lady bug is COMPLETELY ok with me.) My heart warmed and I got teary eyed for a moment as I thought of Mommom. I miss her so terribly.

I used to try to go to Houma as much as I could to allow Mom a weekend off here and there and to just spend time with her. I would bathe her, massage her, do her nails. I loved to pamper the woman who'd spent so much of her life helping to raise me and my brothers. She was amazingly appreciative always, never modest and would gush and gush about how lucky she was to have had such an amazing life. Sometimes she would tell me stories about "the old days" while I massaged her a let her drift off to sleep for her afternoon nap. Oh I absolutely loved to take care of her- though it was of course trying at times, I knew that each moment was so special with her. Somehow I knew that even before her diagnosis of Alzheimer's.

She had this tub room where I'd bathe her in a massive jacuzzi. Last summer, I went in there to find 2 tiny gorgeously green lizards. They were like story book creatures running about on the floor. Mommom giggled and said, "Oh look at the creatures! Aren't they funny!" She and I fussed over them for a moment and I caught them and put them outside. I checked the window - no opening. I didn't know how they'd gotten in really. Over the next few months the lizards reappeared - always tiny - always the most beautiful vibrant green. Then the lady bugs. If my house had to be infested with any type of insect or creature, I would wish it to be these two. Honestly, the only things that could have made the moment any more surreal would be a rainbow and some butterflies - and possibly a talking nutrea or something. But that would just be over the top. Mommom found joy in the simplest of moments. She would laugh and giggle and I would chase the Beatrix Potter characters around before turning on the water for her. I would carefully transport each one outside, unharmed and watch them scurry away into the sunshine (most of the time it was on sunny days that they were there). When the one landed on me today, I knew just who it was. I could hear her giggle, feel her warm touch and a quick kiss on the cheek and off again. I smiled and went inside to hug my babies.

XO, Heather

P.S. David smiled in response to me, coo'd AND danced today!!!

Thursday, September 17, 2009

professional photos

If you're interested, the photos we had taken 2 weeks ago are on the photographers site...


click client login
go to LeBlanc Family and click
password: babies

Mary Louise is 7 pounds 7 ounces today and David is 6 pound 5.5 ounces!

Also, I have been in touch with a lactation consultant in New Orleans and plan to get in touch with one here tomorrow hopefully. Yay! progress!

Wednesday, September 16, 2009

You are my sunshine

This morning I awoke to Mary Louise rustling and fussing. It was 5am and if she could understand my all too early mumbles, she would have heard me begging desperately for 5 more hours (nevermind minutes - let's get down to business here). I have been maintaining an every 3 hours pumping schedule which gets rather exciting at times when I need to pump but it overlaps with feedings. We're working it all out though. It never occurred to me that I might be setting an alarm to pump after the babies got home, but with them sleeping either not at all or for longer periods - about 4 hours at times, my pumping schedule can easily get off track and obviously my body misinterprets that into, "we need less milk." So, every 3 hours it is.

When I looked over at Mary Louise, I could just make out her little facial grimace in the dim light I keep on so that I may rather obsessively check on them throughout the night. She had her fussy face on, noticed that she had gotten my attention, made eye contact, and suddenly burst into a HUGE grin. I couldn't help but laugh. She was like a bright ray of light in the dark room - and she was all too proud that she'd found her voice as she seemed to realize that along with the voice came the power to summon.

I want to thank everyone for their input on my lack of lactation situation. The basics are still not working (fluids, more pumping, more calories) so I am working on a game plan and putting it into action. I got some of the Mother's Love supplement Astrid recommended and started it last night. So far, no noted change but the girl at the store said it may take a few days. It has Fenugreek as well as a few other mentioned lactinogenic herbs. (Oh - fear not, I've discussed what I'm doing with the pediatrician's nurse. She really wasn't any help as no one at the office had ever heard of what I was asking about. But she dutifully looked each item up in the breastfeeding/ drug interaction book and said it would be ok. I still find it odd how many people in the medical field know little or nothing about herbal medicine - especially the herbs that are generaly used in your particular area of specialty - I can't be the only person ever to call with questions about increasing milk supply.) Ok, back to the game plan...I am going out to get the brewer's yeast today I hope. Keep in mind that nothing happens outside of this house until Brent gets home in the afternoons and we live at least 30 minutes from the stores that might carry these items so it's a bit of a feat for me to get there. Once I find out what works, I'll end up just ordering it. But I think this will be a faster way to get started.

I have been eating raw almonds like crazy and plan on making the cookies as soon as I can get my hands on some brewer's yeast (easier said than done around here). I am also making some lentil soup today or tomorrow.

I slept in yesterday morning and plan on doing the same today - I'm pumping currently. The babies will hopefully cooperate with my plans (ha). I envision geisars predictably popping off every few hours while pumping - I think about being able to shoot milk up to 30 feet like my breastfeeding books warn. I picture fast flowing streams - well I was but all it did was make me have to go to the bathroom so that meditation is out. Point is, I'm doing everything I can think of - or that anyone else can think of - to provide these little ones with some sort of immune system especially through this critical time of year.

Mary Louise had her hearing checked again yesterday. Her ear canals had grown but are still not quite large enough for the full test. A preliminary screening was done and both ears passed "beautifully" according to the audiologist. She said she doesn't see any reason for concern and asked that I come back in 3 weeks to try the full test again. She was quite the character while there - smiling, tooting (that is one gasy little girl when she gets going- but she doesn't seem to mind). Then she started jumping. She's been at it for the last few days - she loves to bounce in my lap and "dance" and jump. I call it Mary Louise gymnastics. If I put her in a sitting position, she busies herself moving her arms back and forth while kicking her legs. It almost looks as if she's tap dancing while sitting down. It's hilarious - she bobs her little head to her silent beat and goes to town. Everyone at the audiologist's office thought she was just the most wonderful thing they'd ever seen! (I can't say I disagree of course).

David is progressing at his own pace as well. This morning (it is a day later - I started this post yesterday), after he'd had some of his feeding, he stopped sucking, looked up at me with his furrowed brow and softened his face and smiled. I've been waiting for him to try that. It was amazing - one of the most beautiful sites I've ever seen. A genuine smile from my little boy! He is also picking his head up a little further and turning it from side to side more often. Last night, he stayed awake for a bit and played in Brent's lap - no crying, just fiddling with his blanket and Brent's hands and his little Wubbanub.

Both of our little ones are consistently making eye contact now. Mary Louise tracks side to side and up and down, David tracks side to side and has done up and down a few times - but at a separate time (he doesn't like to do all 4 directions at once). They also both consistently "help to hold" their bottles while feeding; and I have been working with them on breastfeeding as well. They are getting a bit better at holding a latch on. I can breastfeed for a little while then supplement with the bottle.

I am glad someone said something about the feeding amount staying the same - they have been at a little over 3 ounces per feeding for awhile now and show no signs of wanting more. They also eat more in the afternoons, less at night - is that typical? I realized how much we were wasting and wanted to tailor their regimens a bit better and that's what I found. I suppose it doesn't matter as long as they are gaining weight over all. Home Health comes today to give David his first shot for RSV and weigh and check on Mary Louise so we'll see what they say. (She got her first shot last week and did remarkably well.)

Another question - I'm wondering if anyone has heard about Synagist helping to protect again the regular flu? The home health nurse said it did but I've never heard that before and I can't find the information anywhere - the company certainly doesn't claim that. I suppose it is an anti-viral but I thought it was specific to RSV. No matter either way, the little ones are too young and too small for the flu vaccines - Brent and I and visiting family members are getting them in the hopes of offering some protection.

Thank you so much for allowing me a moment of panic - every once in awhile (or everyday - whatever - semantics...)I just need to have a melt down, pick myself up again, and regroup. I do believe I got my first grey hair with my drop in supply though. Ha - I'm sure it won't be my last.


sep 2009

Monday, September 14, 2009

One day at a time

I've always thought that saying was a little silly - "take things one day at a time" - pft - as if there's any way else I can take them right? So on this day, I have been quite frustrated. I've had more than a couple of moments wrought with self loathing and irritation. My milk has decreased significantly. It has over the last week or so. No doubt it has everything to do with exhaustion and the fact that the babies are sleeping a little longer at night - only feeding about twice between the time I go to bed and get up. I've been consciously drinking more, trying to eat more while concentrating on carbs which I read help with the fat content of milk. I've gained 2 pounds, but not produced more milk. I pump more often than the babies eat which I thought would rememdy the problem in a few days. Nope. Maybe I'm being impatient. Luckily, I have quite the collection of pumped milk in the deep freezer but it certainly won't last forever.

I'm just frustrated. In the moments I allow self centering, I absolutely feel gut wrenching guilt for not being able to carry my little ones longer, for not being able to care for them when they were most fragile, for the loss of my precious little Kuylen. I don't know why all of this happened. No answer would be good enough anyhow. But I've drawn much comfort and repaired bits of self doubt knowing that in the face of all adversity, I could in fact supply Mary Louise and David with the best nutrition. The perfect diet created just for them by my silly silly body.

Hopefully, I can resolve my latest issue in the next few days - or at least see a more promising supply. UGH!

P.S. I absolutely LOVE the jogging stroller - and the babies are much happier on our daily walks.

Thursday, September 10, 2009

Special treat...

Ok, though I can almost hear the 15 year old Mary Louise if and when she finds this post..."MAAHOM!! Did you HAVE to post that video?!" (yes, I said video). My answer, a resounding, "well it seemed like a good idea at the time!"

So the babies were full on this morning so I couldn't resist the urge to grab the closest camera and capture of few moments for our viewing pleasure. It was really quite hilarious...and Mary Louise, "Everybody poops!"

David - and his puddin' face: (this was last night)
From at home with Mary Louise and David

And Mary Louise the ha'am in the morning...listen carefully - and yes, that would be David being fussy in the background. I am trying to jiggle him and film her at the same time so excuse the nauseating camera work!
From at home with Mary Louise and David

AND finally - the babies together...

Mary Louise is a mess!
From at home with Mary Louise and David

From at home with Mary Louise and David

Wednesday, September 9, 2009

The club

I hear bizarre and off the wall things people say about the babies all the time - many act as if I'm not even standing there. So, in honor, I've decided to post a few doozies when the mood is right along with my inner voice responses. I guess my post the other day got my wheels turnin'...

Comments that make you go hmmm:
1. Pregnant woman's friend - both women are involved in the care of our babies: looking at Mary Louise: "see, you'll have one of those soon." pregnant woman's response: "yeah, but I would NEVER want one this small. I don't EVER want a preemie."

My inner voice: "yeah lady, because this is just what I've always dreamed of - I just thought it'd be fun to watch my babies struggle in intensive care for over 3 months just praying to bring some part - any part of them home only to have a weekly parade of health care workers calling and stopping in at all hours to see if I'm handling them well."

2. Cashier (which incidentally I have found that cashiers can be quite nosey rosies and chatty cathies when it comes to people purchasing babies items - UGH! I wish I could lie sometimes when they ask how old the babies are!): "How old is your baby?"

Me: (inner voice: lie, Heather LIE!!) What I really said:"They are almost 5 months old. I have two at home (my way of not calling them twins)." (inner voice: damnit Heather! What would it hurt to lie to a stranger!?")

Cashier: "oh. they're still in preemie clothes / newborn diapers?"

Me: (inner voice: ok - don't explain, just keep it short and sweet) what I actually said:"They were born very very early and are just small."

Cashier (and I kid you not on this one): "Oh you just felt like having them early because they were twins?"

Me: (inner voice - dripping with sarcasm - "yeah - I thought I was getting too fat and decided to have them youngins' removed so-as I could get back in shape quicker. I mean they were the shape of babies on the ultrasound so I figured what the heck do they need the last trimester for?") What I actually said: "No, I had complications."

Cashier: "Oh. I never did have none of them with my kids. I would just go in and ask for one of them epidurals and pop those kids right out!"

Me: (inner voice - again with sarcasm: "really, you don't say. How enlightening. If you'll excuse me I'd like run myself over with my husband's truck now. Stupid uterus.") What I actually said: "wow." I smiled politely and started collecting my purchases.

Just as I was about to leave, a precious little woman who had heard the whole exchange piped up and said in almost a whisper, "My daughter was early and was only 2 pounds. Now she's a beautiful young woman far surpassing my hopes and expectations of her."

Me: (inner voice: ok Heather, keep it together. I wonder if it's appropriate to hug her?" )What I actually said: "Thank you." I smiled and walked away.

My very dear friend Amanda lost her dad way too early and all too suddenly. She and her mom were all too easy for me to lean on when I found myself in the same incredibly devastating situation years later. Her mom told me about Amanda's sister's description of people who have been through similarly stressful, tumultuous, devastating, heart breaking - however you describe them, they are nothing short of a crisis - circumstances. She called it a club. When I saw the look on the other preemie mom's face, I knew that we were both unfortunately blessed members of the same club - mothers of micro-preemies. Regardless of time spent and although no one can ever know what another person really goes through even in a similar situation, it remains a common bond. Support and empathy are exchanged without words. Walls and boundaries fall between perfect strangers prior to even a handshake. No one would ever for an instant wish for the membership to grow, but grow it does. In spite of vast medical advancements, and prayers for the longevity of an almost impossible pregnancy, impeccable medical and holistic care, sometimes, things just happen. When they do, and when you're ready, there will be someone like the little lady in the line at the cash register to say- without any words really, "Welcome. You can do this, and you can do it with grace. Take a breath and keep going." ( My inner voice adds: Remember with warmth and love of the dire circumstances in which you started your family and with every breath those babies take, rejoice.)

I love you my sweet sweet babies. I am so excited to encourage you to grow into your immense potential.

Never wake a sleeping baby...

I can't tell you how many times I heard that from a few die hard veteran moms. Of course I ended up having to row that forsaken boat when the babies first came home due to their extremely low birth weights and need for so many extra calories. After the first couple of weeks however, I let them make their own schedules. It's worked well so far. I'm not looking at the clock all the time and they are doing what their bodies tell them they need to do. Everyone is gaining weight (some days, even me, pft) and all are happy for the most part. Currently, I am able to predict with some accuracy (within a half hour or so) when they will wake and when they will need a diaper change or feeding, etc. They naturally stay pretty close together although Mary Louise made the jump from 3 to 4 hour feedings (at night) a week or 2 ago and David is still pretty much on a 3 hour schedule. It still works however, because by the time I finish with David and put him back to bed, Mary Louise is just starting to stir. I can finish with her, pump and clean everything in about an hour and 15 minutes which means I sleep anywhere from an hour and half up to a heavenly 2 and a half hours before starting all over again. Of course Brent helps when he can but he commutes an hour to and from work and therefore needs a bit of rest every now and then.

He was home today to help with the all too long appointments we had. Early Steps in the morning...the babies are officially enrolled and we now have a family service coordinator - this has been over a month in the making. Though it was mostly filling out paperwork and setting long term goals for our little ones, Mary Louise put on quite the show of smiles, grunts, sitting up, staring and kicking her little legs. Needless to say, we were all slightly distracted and very entertained. David, sweet David, slept in Brent's arms after feeding. He was so fussy last night - Brent stayed up with him most of it as I was apparently "out". I must relax more when I know Brent will be there to pick up the slack.

Mary Louise went to sleep towards the end of our 2 hour meeting. It was now 11am and we all had to be at the Kid's Team appointment at 1pm. It was 30 minutes away, it takes awhile to get both babies changed, diaper bag and bottles packed, and oxygen set up moved - are you doing the math?

I let them sleep as much as I could while I gathered their records, extra clothes, Wubbanubs, blanket - you know, the parade of various textiles deemed "completely necessary" for us to leave the house with our little ones. Then I did it....UGH! I still cringe...after having little to no down time for almost a week, very little sleep, and with exhaustion setting in, I woke not one, but TWO sleeping babies for the sake of a stinkin' developmental screening (I really hate developmental screenings now).

So we made it there - with bells on. Both babies content for the moment with bottles in their mouths. We were called to the back rather quickly where the real fun began...weights: David 6 POUNDS!!! Mary Louise: 7 POUNDS 4 OUNCES!!!

Wow - that was exciting! David was crying and Mary Louise was flashing her pearly pink smile for her daddy. On to the next room.

A physical therapist and an occupational therapist took turns evaluating the babies' development over about 10 minutes. First, the passing back and forth was a bit much. Second, I was cold in the room (so I know the babies were) and they took the babies' socks off leaving their feet FREEZING! Third, as I said before, I had to wake them from their naps to be there in the first place. Having said that, the physical therapist was the one who had seen them in the hospital and was amazed at their size and successful development as she calmly played with them on the floor. Mary Louise tolerated her exercises very well while David though a bit grumpy, put on a fair display of what he does at home. So far so good.

The occupational therapist had her turn and played with the babies for about 2 and half minutes each before deciding they were at (Mary Louise) and just below (David) their target level. Both babies were fussy, both were tired, and both couldn't care less about the damn keys she kept shaking in front of their faces (though she did in all fairness catch Mary Louise's glance for a brief moment). She ended her exam by telling me - well insinuating actually - that David couldn't see properly and that I wasn't spending enough "tummy time" with him. His eyes didn't track properly (umm mine don't either when I'm hysterical) and he only picks up his head - not his chest which means he's behind. She also told me that my babies were spoiled - many many times over. Ok - so that's really a pet peeve of mine. I absolutely plan on consciously "spoiling" them with attention throughout their lives, but I question how spoiled a baby their age can be. Honestly - they want what they want - there is no reasoning and therefore no spoiling. My David marches (and grows) to the beat of his own drum and I refuse to try to force him (if that's even possible) or pressure him to do otherwise. I introduce activity whenever he tolerates it, we have massage time, and reading time, we do range of motion exercises multiple times a day. But if he won't follow keys, he won't follow keys. He does follow lights - which is where Mary Louise was a couple of weeks ago. Though I try not to compare them too often, David is typically 7 to 10 days behind her in development - not too surprising considering his size and increased need for emergent care. Honestly, who really knows where these babies "should" be right now - a couple of years ago, this would have been a really different situation for us.

Finally the poor poor speech therapist saw them - or what was left of them. (PS - they still had to see their neonatologist after all of the therapists got through). Really, both babies did well with her - most likely because her assessment was short and sweet because they really don't have any feeding problems and are just beginning to coo and smile. They ranked the best in speech at around 3 mos and just under that for the 2 of them.

Their PT scores weren't too shabby either with both of them scoring just above their adjusted age of 1.8 months.

We were so happy to see the neonatologist who has saved our babies' lives and faculties time and time again throughout their NICU stay. He grinned when he saw us and exclaimed how good our little ones looked. Though David was (again) a little fussy, they both seemed to be just fine with the doctor's handling.

We dragged out the door just over 2 hours from the start of the appointment. We skipped our walk today as I just couldn't in good conscience disturb my sleeping beauties again.

Tomorrow, we try out the jogging stroller!!!! I am so so excited I can hardly contain myself! Marathon mom, here I come!! (ha - maybe I should just set my sites on running a mile first right?)

Tuesday, September 8, 2009

Be still my heart!

Sweet David, after a few days of bringing new meaning to the word fussy, had a moment of serenity and peace this morning. I couldn't resist but to take another batch of pictures. (Are you getting tired of my shutterbug ways yet?)

David - happy times

Other developments...the babies have developed cartilage in their ears! Ha - may seem a funny thing to notice but while in the NICU, their ears were just flaps of skin without any type of rigidity at all. They would sleep on their sides and when they would be moved, their little ears would be in the funniest positions. They would just stay all folded up until someone flapped them back the way they should be!

Lizzie seems to be settling in just fine. We have been very careful in introducing her to the little ones and although we won't be saddling her up to give them a ride any time soon, she is very sweet towards them. If they cry, she stands a few feet away from them with a very worried look on her face. It seems that she an Tootle have enlisted one another as their protectors of sorts.

Tomorrow we all have a very long day with Early Steps developmental program in the morning and Kid's Team developmental program in the afternoon. Please wish us much luck and happy faces as we muddle through some more evaluations on our babies' progress. May their performance in front of an audience match the ones they put on for me and Brent at home.

The pediatrician just called... Mary Louise's thyroid is still functioning at a normal level!! She will be checked once more in about a month. This progress is such exciting news for her! No new medicines today!

Hope you're enjoying all of the photos. We're just so proud and excited and want to share our special moments with all who have supported us for so long!

XO, Heather

Monday, September 7, 2009

Not so laborious weekend!

My mom and Damon (my older brother) came for a visit this weekend. Damon and Brent spent some time (in between feedings) training for their upcoming triathlons and Mom and I were able to visit a bit.

Currently on this fabulously long weekend, I can hear Brent snoring quietly on the couch - with Mary Louise lying on his chest in just a diaper as she promptly spit up all over herself and him when he got home.

I can hear David hiccuping softly from across the room in his Nap Nanny. It makes me smile to hear those (hiccups) now. I can remember not so very long ago when a spurt of hiccups - a more than daily occurrence with our babies - made me cringe. Watching their tiny bodies jolt, their chests retract and their faces grimace with every uncontrollable spasm brought the harsh reality of their fragility to light on even the best of days. Now, all they do is softly "hicc-up". It's barely noticeable really and the spells pass much much faster than they did during our NICU stay.

Quiet times like this allow me to really step back and just bask in the overall success of our journey so far. Our beautiful train wreck of a birthing experience, our incredible lessons of strength and love learned in the blink of time we were able to spend with our Kuylen, and the opportunities that lie before us in watching Mary Louise and David grow and thrive under our care.

The dishes and the laundry can wait. There are more important things to take in at this moment.

Mary Louise has been quite the entertainer these days...
Labor Day weekend September 2009

These are the photos mom took while here. They (she and Damon) also stopped in BR to see 2 of my younger brothers, Kyle and Sean...

Friday, September 4, 2009

Grown ups say the darndest things...

So yesterday we were walking at the park and an older group of people walked up (they must have been in their 70's or so). A man said while pointing at the babies, "oh! They are real! I thought they were just toys!" I giggled. I mean I've always been a little left of center but to stroll around with a full size twin stroller - in public no less - with dolls...well I like to think I can contain myself a bit more than that.

I have always loved to just sit back and watch people - really stare and analyze them. Not to be rude, I just like to take in the person as a while and for that, one must stare a moment - although I'm sure if they notice my hard gaze they get a bit put off. Typically, they don't notice though - or at least I don't think they do. (Of course Brent would argue with that.)

Anyhow, throughout this pregnancy and delivery - and in taking the babies to their various appointments, I've seen a whole new side of humanity. It's quite funny actually, the things perfect strangers say to you when you are carrying or parenting multiples. I suppose most of it just comes with the territory. It is human nature to be curious. But when the person at the checkout counter, in seeing my items 2 by 2, asks if I have twins, then asks in so many words how they were conceived, I must say it's hard for me to resist the urge to ask them about their contraception of choice. Another comment I get is when they see that there is a boy and a girl, people get really excited and say, "well I guess you got it all done with one shot!" Although I understand that there is a innate need for perfect balance, that comment always sort of catches me off guard - maybe it's just because I am one of 5 - we've always been a bit off balance and I've always LOVED it. Perhaps the only thing that really makes me cringe is when someone exclaims when looking at me, "oh! I am so glad I only had one at a time!" To that person I say, "well I'm glad you did too."

Yesterday I had to bring Mary Louise in for blood work. Anther child was there - actually there were a few. But this one little girl kept running (and I mean literally running) around the waiting room in circles, stopping where I was sitting, staring, then running and on and on. Finally the little girl bounced up to her momma and blurted out what was on her mind..."Why do some babies have those tubes and plastic things in their nostrils?" I smiled at her blunt curiosity. But then, much to my surprise, her annoyed mother whispered in that "I'm whispering but ignoring the fact that everyone can hear me voice" and said, "shh - there's something wrong with that baby. Now sit down and don't go over there again." There was a part of me that was happy the little girl had finally been somewhat disciplined because in all honesty, she was driving me crazy with her stomping around and making me nervous because I had explicitly picked my little corner for the lack of traffic there. Then there was the other part of me - the part that thought, "aww - My Mary Louise, there's nothing wrong with you love, and if there is, may we all be so beautifully flawed."

first week of september

Thursday, September 3, 2009

RSV information

It has come to my attention that I never really explained all of the details of exactly why we must keep our babies under a sort of reverse quarantine for - well, until they are past their second birthday honestly. With RSV season knocking on our door, I thought it time to really explain the nitty gritty of what we are trying to avoid and why. If you know about RSV and it's dangers, please disregard this post of course. If not, we appreciate you taking the time to try and understand our protective actions.

We have discussed the isolation of our babies at length with their pediatrician, neonatologist and cardiologist. All have urged us to keep our little ones away from enclosed and crowded areas as well as other children - especially other babies and toddlers - as much as we possibly can. They were both diagnosed with chronic lung disease which will not completely resolve until the age of 3. It is highly reccomended that we maintain our strict precautions throughout their first 2 RSV seasons. (Yes, that does unfortunately mean this year AND next.)

Our babies have EVERY risk factor for contracting RSV - multiple birth, materal and paternal family history of childhood asthma, low birth weights, extreme prematurity, and chronic lung disease to name a few. We therefore feel it pertinent to their current and future well being that we follow the instructions of their docotrs and the CDC in an effort to reduce their risk as much as possible.

Please know (as I have said many times before) that this is one of the most difficult restrictions for us to adhere to - for completely selfish reasons, such as the want for others to appreciate our little beauties as much as we do, or to simply have the convenience of taking them to the grocery store- we'd LOVE nothing more than to put them on display. However, if it means putting them at increased risk for an otherwise preventable lifetime of breathing difficulties and hospitalization, and another bout with artificial ventilation - not to mention the possibility of death - we must politely say, "no thank you."

We have (thankfully) gotten permission from the doctors to continue to do outside activites (taking the babies to the park for walks, etc.) while the weather is nice. So, until healthier days arrive, that's pretty much the only thing on the out of the house agenda for our babies.

Please know that we truly appreciate your continued support and prayers through this our first RSV season. We are simply doing everything we know how to keep our little ones healthy and give them every chance to thrive.

Below are some links with further explanation of RSV. The first is a very good straight forward generic letter written by a preemie care website. It is an easy read if you have just a few more minutes.

Again, we cannot express enough how thankful we are for such an incredible outpour of support throughout this time in our family. All we've ever wanted was for these babies to have every opportunity to become healthy, thriving kiddos. I've always said, "I just want to not have to worry about them when they eat dirt at the playground or sand at the beach. I just want them to be regular kids!" Through our continued efforts, we have no reason to believe that they won't do just that (become regular kids I mean).

our sincerest love and gratitude,
Heather and Brent



There are some further links contained on both links if you still have questions and as always feel free to send me an email at heatherbowe@gmail.com if you have any further questions, comments you don't want to post here or any other feedback. Much appreciated!

Wednesday, September 2, 2009

Our first family photo session!

So we had Lindsey Janies here at the house today to take some family and baby pictures. She was fabulous. Sweet, patient, honest, and best of all, not afraid to get right in here and get some pictures of our most precious accomplishments!

Of course it wouldn't be a professional baby photo shoot without a little poop, a little drool, LOTS of tears and a few tantrums (uhem - David); and Mary Louise? Ha - she was either fussing or sleeping WITH a Wubbanub in her mouth. Honestly, I'm thinking that after the photos are up on the website, I should talk to Lindsey about sending some in to the manufacturer of Wubbanubs so that they can do an add campaign around them.

I thought I had it all together - they both were fed, both took naps, I had backup bottles ready to go, clean diapers - the whole 9...I can almost hear the laughter from all you veteran moms out there. I should know better than to think that I can control or predict ANYTHING about my little ones - and that's truly the way I like it. It just would have been nice to see Mary Louise's eyes at some point - and maybe for the 2 of them to get through 5 minutes without their little pets the Wubbanubs. But then again if they were so predictable I'd venture to say that they wouldn't be my Mary Louise and David! So walk on babies - march to the beat of your own drums and don't let anyone (including your momma) deter you from what you know is right for you!

So really, I think they'll be some really great pictures of all of us and I'm so glad I set aside my own vanity for a brief moment and got some family ones in so that this oh so special time can be recorded in some way. (I'm not exactly feeling super hot these days with the extra 30 pounds and brand spanking new scar - even though the latter I know no one can see.)

I think they'll be beautiful, flab, Wubbanubs and all.

Ok - must go. Mary Louise just spit up...on David's head. (without any sarcasm at all)I truly do love this life! I'm not sure I've ever laughed this much on a regular basis! Ok seriously, David's not happy.


P.S. I almost forgot - David held his head up during the pictures for about 5 seconds - he held it up high and was pushing up with his arms!! So exciting to see them grow and develop! Way to go David!

Tuesday, September 1, 2009

happy days are here - all the time!

We have continued our "workouts" at the park. I just walked around our little neighborhood this evening. The babies are falling into the routine. I can go about 2 miles before someone has enough and I have to stop for a feeding after which we just pack up and go home (the babies will tolerate the ride as long as I keep going - but to stop and then go again just doesn't work for them). Anyhow, we are enjoying the nice weather from the last few days - spending lots of time walking and rocking outside.

David has started to soothe himself at times! Exciting to me as before he would start crying and get out of breath and out of control very quickly unless he was picked up almost immediately. So, our little guy seems to be growing up.

Mary Louise was so funny today! David started fussing because he'd lost his paci on our walk. I went to the front of the stroller to replace it and Mary Louise was sitting there with the biggest grin on her face - all wide eyed and sparkly happy. It was so sweet.

We also had a wonderful time on Skype with my little brother Collin. He's in Dominica for med school - just finished his first semester. We've had a very hard time coinciding with our schedules so that he could see the babies but today it worked! We (the 3 of us) chatted and giggled for quite a while. David fussed, Mary Louise was wild - all over - such a little monkey!

Brent and I are really excited that tomorrow we are having a photographer come to the house to take the babies' "newborn" photos. We are also hoping to slip in our first family photo. What a special day it will be!

Today, a woman from the Early Steps program came to discuss the babies' developmental status. She'd sent an OT here a couple of weeks ago to evaluate them. They both did wonderfully! The tests didn't take their prematurity under consideration. They were evaluated as a regular full term 4 month old. Both David and Mary Louise tested just below average! I know it sounds strange but they weren't near as behind as the therapist thought they would be. (Early Steps is a state program for preemies. The rep comes to the house to evaluate the babies and then sets up services such as PT. All therapy is done at home which is so so nice.)

So, that's the latest! David is waking up - almost feeding time.

Love, Heather