Friday, July 31, 2009

anything to make you happy

I got exactly one hour of sleep last night. The one hour I got was some of the hardest most amazing sleep ever until it was interrupted by the hungry fussing of David and Mary Louise - and by Brent trying to kiss me goodbye on his way to work. Poor Brent. He almost got swatted! Sweet babies, they didn't sleep a wink and certainly kept their momma on her toes last night and today.

Overall I tried to keep my wits about me, but must admit that I felt a bit downtrodden around noon time when, amongst Mary Louise's cries and David's grunts, I got a phone call from the cardiologist asking me to bring Mary Louise to have blood! HA - as if just walking out the door is the 5 minute task it used to be!

I waited until Brent got home so that I could leave David home and set out with Mary Louise for her blood work. Armed with 3 extra sets of clothes, 10 diapers, ointment, a bottle of breast milk - in case she wouldn't latch on which she sometimes does - a pacifier (I'm sure I have 2 in there just in case one falls on the floor - even though it's clipped to her at all times) - keys, wallet, ins. cards, at least 3 burp cloths, a blanket, a hat...ha - I could go to the pathology lab for a simple blood test or I could leave the country for a few days! I entered the building with her tucked safely and almost invisibly into her sling - sleeping away as if her mother were not the most paranoid germaphobe "don't touch my baby!!" "this is an RSV and snotty nose free zone thank you!!" mom on the planet.

My mom says that people give off vibes when they carry their babies. I've noticed. Some people look like they don't care about their extra luggage - they are just at the store, etc. to get what they need - no fuss no muss. Some people look as if they would like their baby to be on display in the store window - they attach so many bells and whistles of entertainment to the carrier they perch on top of the buggy that it might as well be a stage with a spot light - this is my baby!!! and he/she is the cutest ever!!!! (now, I am actually one of those moms - on the inside.) On the outside, I'm confident I put off a vibe that says, "do not stop me, do not ask questions, I am crazy bag lady (complete with a very cute diaper bag attached to me at all times) - you have no idea what I have in this obvious piece of fabric (sling) around my torso - and I'm not telling you what it is either so stand back - let me do what I came here to do and no one will get hurt."

The paranoia that is instilled into a micro-preemie parent's psyche is such that each time I leave the house - which is only for doctor appointments anyhow- I feel anxious, I weigh the risk of showing up to the appointment and the consequent risk the risk of showing my (to me) perfect porcelain delicacies to the world against the opposite risk of keeping them safe at home forever - away from the swine flus, RSV-ers, and of course the snotty noses of the "outside" world. Of course I know that the outside eventually blends with the inside - it is an absolute impossibility to protect them completely, but is it not a fact that paranoia is based on irrational thought? What if someone coughs or sneezes? What if someone has a sweet curious babe that bravely toddles up to me and "wants to see"? For months I've been told, "now when you leave, you MUST keep them away from crowds and people as much as possible - and if you have to go out, you MUST keep them covered - do not let people touch them or ogle them unnecessarily. This is required of you if you want to avoid ending up right back in the hospital on the vent with a respiratory infection."

After such long hours in hospitals - and over 3 months of such intense care, to know that a simple common cold could possibly land us right back where we started is almost too much to handle. On the flip side, to know that if I can keep up the nutty facade and breast feeding/ pumping as long as is possible gives these little ones a chance to have healthy lungs, fewer allergies and ear infections, better motor and vision skills as well as a host of other benefits fuels me to continue - regardless of social costs.

So, Mary Louise did just fine with her blood tests. We were thankfully the only people there as I intentionally went around closing time; and finally, I managed to allienate the lab personnel enough for them to oagle at our little beauty from a comfortable 5 foot radius. My most important resposibility and greatest joy left the building unscathed - and I took a deep breath in the sunshine once outside. I revelled in her strength and sort of giggled at my "going into battle" approach.

With time, I'm sure it will get easier.

HA - this blog has taken me 2 days to write. I type a sentence, place a paci, type a sentence, change a diaper and so on.

We had a wonderful relaxing day at home - after their up all night crying, pooping, and playing party, both babies were so exhausted that they slept most of last night and David is still having to be disturbed for feeding purposes. Speaking of which, I'm sure many feel it's ridiculous to wake a sleeping baby for feeding. However, when said sleeping baby is just barely 4 pounds and has slept for 5 hours, it becomes necessary for weight gain purposes to wake him. Thankfully, David goes right back to sleep with his full belly and by staying on top of his feedings, I avoid the panic stricken scream of, "I JUST WOKE UP AND I'M STARVING MOM!!!" by the little firecrackers.

We also had the long awaited mom and tot swim time in the tub. I held them in my lap until they got gently acclimated to the warm bath water, then slowly floated them about. David fell asleep and Mary Louise kicked and kicked and kicked - just as she did when I was pregnant. They both seemed so content. It was just wonderful - so simple and so so wonderful.

I read to Mary Louise last night. David was already fast asleep as Mary Louise continued to voice her opinion on an apparently to early for her bedtime (um - midnight). So I read Mary Louise The Giving Tree. It has always been a favorite of mine - one of a select and (in my opinion) elite group of books that grows with a person - regardless of age. The simplistic but incredibly insightful words dripping with my own memories of my mom and grandmother's voices flowed calmly and freely as Mary Louise fell fast asleep in my lap. I looked down at her and smiled.

There is no where else in the world I'd rather be.

Thursday, July 30, 2009

the little opposites

So when I was pregnant, Mary Louise was always (and I mean ALWAYS) with Kuylen. From day one, they were so close that on many ultrasounds, it was hard to tell them apart. Then there was David. He would flit about in any open area as if he was daring the others to try to "swim" after him. He was just hilarious. While Mary Louise and Kuylen would huddle together to the point that they could scarcely move, David shifted back and forth in the rest of the vast space that was my uterus.

When Kuylen died, I worried so much about Mary Louise. I thought they (Mary Louise and David) would eventually both have some sort of innate void to deal with, but worried that Mary Louise would somehow take a nose dive health wise because her ever present partner was no longer physically next to her. She seems to have done well, but still loves loves loves to cling to us - and to David. She just must have her people.

David on the other hand is perfectly content for the most part in his cacoon or swaddled tightly in a soft blanket (something Mary Louise absolutely hates!). He sits and makes faces, uses crying as a last resort, knows exactly what he wants and once we figure it out, he's happy for at least a short while.

It's somehow hard for me to view them as twins. I suppose problem one is the fact that to me, they will always be triplets. Other than that, they are simply 2 totally separate children - they just share the same birthday.

We are doing quite well here I think - figuring things out as we go. My mom left yesterday after working so diligently to clean out my house. We just can't thank her enough for all of her hard hard work here. Brent went back to work today. His job is quite nice in that he is home early in the afternoons and can take off days here and there such as next week when we have tons of doctor appointments for both babies. The extra set of hands will be a HUGE help.

So, I think today is my first day by myself with the 2 babies. Enjoying it? oh yes. Exhausted? of course. But for such happy reasons.

The breastfeeding is continuing to go well. Mary Louise is wild about it and David is taking his time getting used to the idea. I am of course having to supplement with some of my vast supply of pumped milk - as long as they are getting it right? Hopefully, all that I've saved up will last until they are big and strong enough to strictly breastfeed. Anyhow, it seems to be progressing well.

Many thanks for the continued prayers as we all settle in!

Love, Heather

Tuesday, July 28, 2009

not so routine

Mary Louise had her "Kid's Team" introductory appointment yesterday as well as her follow-up cardiologist appointment.

The cardiologist appointment went well, the doctor was very very nice and explained everything patiently and thoroughly. Mary Louise had an EKG and an ECHO to see how her heart is developing. She has no PDA but still has a patent foramen ovale. This was expected to some extent but hers seems to be slightly more open than normal for her age and is causing some mild side effects (she pants a bit when she eats or does activity). The right side of her heart is slightly thickened (its measurements were the same as about a 16 pound baby's should be). If this were to continue, it would have much more extreme effects on her and would require surgical intervention. However, she was put on a low dose of Lasix (a diuretic) to help her lungs process the excess fluid shunted their way until her little body and heart can catch up and grow and the foramen ovale (hopefully) will close on it's own over time.

The Kid's Team is a group of physical therapists, occupational therapists, speech therapists and I'm sure therapists that I don't yet know about - in short, developmental gurus all headed by the babies' neonatologist. They keep tabs on our little ones to ensure appropriate motor and cognitive milestones are reached. Now, as my due date is not until August 5th, Mary Louise and David should be acting like a umm 38 week newborn would be acting. Mary Louise, who slept through exactly one half of her evaluation was "graded" as acting like a 2 week old. Ha - the occupational therapist was worried that I'd be upset by such results - even though I assured her that I still got excited about things like regular poop, the sounds of their cries - and still as far as I'm concerned she's still a month ahead of schedule right?

So, the experience was interesting. I can now change diapers in just about any situation and successfully breast feed in crowded places - all without people even noticing that I have a very special tiny bundle of baby in that sling across my torso. (ha - don't panic - I fed her in the car in a couple of parking lots - but people actaully do miss the fact that she's in the sling most of the time).

David starts his appointments next week - many of them will be along side Mary Louise so more adventures on the way for the babies in bubbles! Amazing, I'm supposed to keep them away from anyone and everyone all the while taking them to about 3 to 4 appointments per week!

David is doing well for his first night and day at home. He seems a bit wiped out this evening so he is resting on my chest while I'm blogging. Mary Louise seems to have calmed down a bit today - we took her off of the human milk forifier as we didn't really have to continue it in the first place and she seems to be gaining weight well - she was 5 pounds yesterday at the cardiologist though that weight is debateable to me as they kept her diaper on. At any rate, we are having a great time getitng to know our little ones a bit better.


happy birthday David

So some choose names because they sound good, some want something different...Brent and I decided - or sort of ended up with family names for all 3 of our babies.

David Oliver comes from my Dad (David) and Oliver is a bit his (my David) and a bit an uncle of mine in England who has always been simply amazing to me.

My Dad died almost 2 years ago. He went for his usual morning jog, came home, bent down to untie his shoes and collapsed. He was 57 years old. Needless to say, there is not a day that goes by that I don't think of him, miss him, wonder if he'd be proud, wish that he could be here to see our little ones continue to learn, grow, and hold me in complete awe of their strength, determination and abilities.

Yesterday (the 27th of July) would have been my Dad's 59th birthday. How appropriate that after 99 days in the NICU, and after just barely passing 4 pounds, our little peanut was sent home. We are so so happy, amazed and just overwhelmed with our great many blessings and unexplained happy turns in the grand scheme of the past 8 or so months. We truly are some of the luckiest people I know.

Brent and I decided not too long after the babies were born that we would celebrate their homecomings as if they were a birthday of sorts. To me, they truly are their birthdays. They are a beginning for them and for our family.

I am so excited to be here, in this moment - with the colic queen, the poop master and the respectfully afraid husband. I am so happy and content to be here - just here - not knowing what's around the corner is perhaps the most amazing gift of all.

home at last - love to all,

Sunday, July 26, 2009

and how are you?!

We're doing well settling in with our Queen Mary Louise the Feisty! She still has quite the case of colic (which I now realize I misspelled about 100 times in the last blog - oh well). But she is eating well and hanging in there.

David was 4 pounds 2.5 ounces yesterday!!! He was put in an open crib which was exciting enough, but then the doctor phoned today...he is going HOME tomorrow!!!! (provided he does well after his eye exam in the morning). Oh we are so so excited we can hardly stand it!

will update as soon as things are definite!

Love, Heather

Friday, July 24, 2009

What a big girl!

Mary Louise had her first pediatrician appointment today - and also (gulp) had her 2 month shots. I'm pretty sure she handled it MUCH better than I did. She's tired and cranky this afternoon, but has not run fever or had any obvious reactions to her immunizations (so so thankful for that). The doctor was very nice - he's the type of person who seems impossible to shock or surprise. When I asked why he thought she was so cranky all of the time he looked her over and said, "well, that red hair may have a little to do with it." I so appreciated that moment - the moment in which we have the esteemed luxury of joking about her feistyness rather than waiting for the devastating news as to why our little one cries so much. She checked out just fine and he felt that size wise she should catch up to her peers by the age of 2 - not that it matters, but it's nice to know anyhow. So, way to go little girl for making through a wellness and prevention check-up!!

I have figured out after 2 solid nights without sleep that a sling is a FABULOUS thing to have. Mary Louise is officially connected to my middle all day - and is sleeping MUCH better. Also, last night when I thought, "It is just physically impossible for her to stay awake one minute longer - she'll be back in the hospital!" (looking back on that, I believe I was having more of a self-reflective moment) I gave her some Mylicon. In fit of desperation followed by the guilt and disappointment that I could not fix whatever was ailing her, I did what the nurses at the hospital suggested and used the not so secret gas remedy. The result? 2 hours of unadulterated sleep!!! I couldn't believe it! Mary Louise started fussing and I felt like it had only been a few minutes - my heart sank. I didn't know what else to do for her, but when I looked at the clock, she was right on target - she was just hungry! Ha - then I felt totally ridiculous for not figuring out the problem sooner - congrats to us, we have a colicky baby. Really, it serves me right for falling prey to the advertisements for many of the baby items we have - "this prevents colick", "if you have this, you're sure to avoid colick", and on and on. If all of those things really prevented colick - I'd be quadruple safe-guarded against the beast. But alas - a not so simple 4 hour trip home from New Orleans upset her so much that her tummy will (I fear) never settle down again! (well, the trip along with the new environment I'm sure)

David the fearless is growing and growing - only 9 more ounces until he reaches the 4 and a half pound mark! Hopefully, at that time, they will consider his discharge. In the meantime he is breaking hearts in NICU's all over the state - some of the staff at the New Orleans hospital fell in love with our little guy and the staff here in Lake Charles was all too happy to see how he's grown - and all of his new facial expressions. (uhem - I can't say I blame them!)

Unfortunately, while I was changing his diaper last night I noticed some blood streaking in his stool - as it turns out, his fissure is back - or it never went away. A KUB turned out negative once more for intussuception, etc. Praying for the culprit's resolution ASAP.

Other than that, he seems happy and healthy.

some long over-due photos...
New Orleans transfers, eye surgeries and Mary Louise at home

enjoy! Love, Heather

Wednesday, July 22, 2009

Beautiful chaos is right!

So Mary Louise is officially HOME!!! David is back and snuggled into the NICU in Lake Charles - eating well and growing. It is quite tempting to sew some weights into his onsies to get him home a bit sooner, but I'll hold off - let the little guy stand on his own. I know he can do this!

We so so love having our little sweet potato home (ahem - even though she did not sleep one wink last night!). I giggled each time she fussed - well the giggling may have dissolved into a smirk by the time the sun was coming up, but I was happy all the same. She has done well today. I keep walking by and checking on her and telling Brent, "umm - there's a baby in the house!" It's hard to believe but the sleep study showed she had no needs of any kind. She was sent home without a monitor or oxygen or anything. I'm so used to looking behind me for cords that I keep finding myslef automatically stepping over invisible obstacles!

David looked so sweet in his dino pijamas this afternoon. I must say it's incredibly difficult to have the 2 of them in 2 different places but hopefully things will continue to progress quickly. He is now 3 pounds 12 ounces (1700 grams). He must be 1800 grams to be in an open crib here and then stay in that for a few days before being sent home. Oh - Brent just returned home from the hospital. David weighed 3 pounds 13.2 ounces this evening - steady gaining.

Our house is in absolute chaos - it actually looks like we're moving! But we're taking it one day and one thing at a time - Mary Louise has diapers and a place to sleep so we're ok for now. My mom is here to play rescue the Heather once more - Brent followed the ambulance and Mom drove me and Mary Louise home last night. Today, we've been cleaning the house, getting things straight - and oh - Mary Louise is hungry again! Must do the MOMMY duties!!

hugs and kisses -

Monday, July 20, 2009

home stretch!

David and Mary Louise both had their eye exams today. Mary Louise looks great - she will be scheduled for weekly checkups until her eyes are considered mature (until the vascularization of the retina grows to Zone III of her eyes). There is no reason to think that any more surgery will be needed. More news on her in a moment...

David still had the questionable spot on his retina (the one that was there last week and needed watching). The spot had not changed so rather than taking the chance of having to come back here after being transferred back to Lake Charles, the doctor treated the area this afternoon. (It was done with conscious sedation in the NICU - he is awake and very angry as I am typing this and the touchup only took about 15 minutes). Anyhow, as far as his eyes go, he is in the same boat as Mary Louise -immature with weekly checkups.

Drum-roll puhlease!!!!....
MARY LOUISE IS GOING HOME!!!!!! not just any home, OUR HOME - as in the real house - not the hospital - umm - as in we'd better get that house clean because there will actually be a baby in it!! OH my goodness we are just so so excited and scared and happy and overwhelmed and excited (I know - I said that but it deserves to be said more than once I'd say). We just can't believe it! She is having a sleep study right now to determine anat home need for a monitor, oxygen or any other equipment. We will get the results of that and a hearing test at some point tomorrow. I am hoping that they discharge her at the same time that they transfer David or things will get rather exciting around here as I figure out how everything will work.

David will be sent back to the hospital in Lake Charles as soon as he is stable enough to go - most likely tomorrow but could be at the latest on Wednesday. He must gain a bit more weight before GOING HOME. (ha - I love saying that - I think Brent and I had just conceded to visiting a hospital daily for an indefinite amount of time -it has simply becaome our temporary way of life). What a happy adjustment we are about to make!

Oh I just can't believe it - first breastfeeding and now this?! What a time we've had!

Will keep you posted!

Love, Heather

Sunday, July 19, 2009

Sunday sunday sunday!

Tomorrow is eye exam day!! Hopefully, we will all be transferred back to Lake Charles post exam. The doctor tends to come in the late afternoon though so odds are if a transfer is to occur, it will happen on Tuesday. David has just one spot that was being watched for progress and Mary Louise should be healed enough by tomorrow to see if her ROP is done or not.

We are having a good day with Brent's parents and my youngest brother Sean here visiting...until tomorrow!

Love, Heather

P.S. - Mary Louise and David are 3 months old today!

Saturday, July 18, 2009

putting on a happy face!

David laughed today!! He was sitting on my lap after a feeding and was still wide awake. He loves for us to lift him up and down slowly - we call it David flying - it seems to soothe him. Actually the occupational therapist started doing it when he was inconsolable for those few days and it worked so well. He stops crying and just stares. So today I was doing that with him and kissing him when he came down and all of a sudden he grinned a huge grin and laugh - just a tiny laugh - but a laugh all the same. It was amazing! - all of it - the fact that I can play with him at all - the fact that I can kiss him after breast feeding (woot woot! - even if I do say so myself) - and LAUGHING!!! amazing!! (I seem to be running rather low on adjectives today - ha).

In other news, Brent and I put carseats in the Sequioa this afternoon. I took photos and will have to post them soon. So we have carseats, window shades, a diaper bag with diapers, ointment, wipes, etc. and breastfeeding paraphinalia all set to go. All we need is our babies!!! Ha - the carseat installment experience was fantastic and I must reccommend it to anyone and everyone regardless of your plan to procreate. It's just a hilarious way to spend and hour and a half. Brent and I looked over at each other at least a hundred times with random straps in our hands and said,"where's this go?" (umm after about a half hour of that, we actually got out the instruction manual - you don't think we did that right off the bat do you?) I'm sure at one point we looked like 2 chimps banging on the seats and digging for the right hook to connect to the right strap. Anyhow, they are in now - and feel quite secure (again - even if I do say so myself!)

As I said, photos to follow.

Love, Heather

Friday, July 17, 2009



my disclaimer

So if you didn't know before, this is a blog about MY thoughts and feelings about MY NICU experience with MY (or ok, our - meaning Brent's and MINE) babies who were born at 24 weeks and 5 days after an absolutely horrific pregnancy, month of in hospital bed rest, loss of a child at 5 days, etc. Really, if you want the whole story, start at the beginning of the blog. I must emphasize (apparently) that this is only MY feelings and thoughts - with an occasional installment from my husband, Brent. I am a nurse - but an adult health nurse with limited knowledge of neonatal care - some learned during a 6 week rotation through a level III NICU just before I graduated from nursing school and the rest I've learned on the fly throughout this 89 day (so far) experience.

If you'd like to judge me in any way for what I write on this blog, feel free. But, realize that I make no apologies for my OPINION. There are 2 sides to every story and I am free to voice mine however I choose. This blog has served as my venting spot, information seeking spot, a liason for us to keep friends and family informed and a spot for us to receive feedback on our current situation and network with those who have had the unfortunate blessing of being in a similar situation. That's it. I make it a point to leave out names of employees involved in the care of our babies for a reason. Of course they can likely identify themselves if they read the stories, but no one else knows (or really cares for that matter) who they are. So, if in reading this, you feel slighted or upset by what's written, re-evaluate your actions - no one else knows who you are unless you tell them.

Furthermore, this blog is laced with sarcasm, harsh criticism, tears, jokes - off color or otherwise. In short, it shows my personality. So, if you have a problem with my "tone" stop reading - honestly -no one forced you to search for this one in bilions of internet sites.

The babies are doing well. I am continuing my breast feeding efforts with the patient help of the lactation consultant's pull and poke method. Mary Louise as it turns out is an insatiable little booger. Their weights are (and this may not be exact...) David - 3 pounds 9.1 ounces and Mary Louise - 4 pounds 5 ounces.

I tried feeding both at the same time last night but got a bit frustrated and had to stop. I really feel like once we are home (wow that sounds good) and I am able to relax a little more and have a bit more space, I'll be able to figure out what works best for all of us. Until then, I am practicing with one at a time and supplementing with pumped milk. (and having tons of fun doing it!)

In other news, it's Brent's birthday today and we took advantage of our location and went to one of our favorite New Orleans restaurants in honor of the occasion. To complete our date night, we've returned to the hospital for the feeding and bathing of our babies - and are so so happy to have the opportunity to do so.

Sorry, I'll be a bit more with it tomorrow - I'm having quite the off day today.

Love, Heather

P.S. I gave Mary Louise a "nosey" last night and she moved and tried to nurse on my nose! so so funny!

An official disclaimer

So if you didn't know before, this is a blog about MY thoughts and feelings about MY NICU experience with MY (or ok, our - meaning Brent's and MINE) babies who were born at 24 weeks and 5 days after an absolutely horrific pregnancy, month of in hospital bed rest, loss of a child at 5 days, etc. Really, if you want the whole story, start at the beginning of the blog. I must emphasize (apparently) that this is only MY feelings and thoughts - with an occasional installment from my husband, Brent. I am a nurse - but an adult health nurse with limited knowledge of neonatal care - some learned during a 6 week rotation through a level III NICU just before I graduated from nursing school and the rest I've learned on the fly throughout this 89 day (so far) experience.

If you'd like to judge me in any way for what I write on this blog, feel free. But, realize that I make no apologies for my OPINION. There are 2 sides to every story and I am free to voice mine however I choose. This blog has served as my venting spot, information seeking spot, a liason for us to keep friends and family informed and a spot for us to receive feedback on our current situation and network with those who have had the unfortunate blessing of being in a similar situation. That's it. I make it a point to leave out names of employees involved in the care of our babies for a reason. Of course they can likely identify themselves if they read the stories, but no one else knows (or really cares for that matter) who they are. So, if in reading this, you feel slighted or upset by what's written, re-evaluate your actions - no one else knows who you are unless you tell them.

Furthermore, this blog is laced with sarcasm, harsh criticism, tears, jokes - off color or otherwise. In short, it shows my personality. So, if you have a problem with my "tone" stop reading - honestly -no one forced you to search for this one in bilions of internet sites.

Wondering where this is coming from? I'll be happy to tell you...

Aparently, someone felt it necessary to alert the neonatologist (by the way, there are numerous neonatologists employed here) to the blog. In reading the blog about the rectal exam, he came to the conclusion that it'd be a good idea to question me about it - in the NICU, while I was holding Mary Louise, at feeding time, in front of other parents and nurses. Bottom line? He feels justified in his actions (the rectal exam). I don't feel he was. We simply disagree. I say that he should have notified me and given me the option to decline the exam. He says he "wouldn't have let me decline" and "he doesn't have to notify parents of such a procedure".

Assuming you (doctor) are reading this post as well...

Now, I would question, doctor, how you have time to read my pitiful little social blog yet you cannot - to my knowledge - remedy a situation involving a very specific over-dose pointed out to us by you, a resident and other staff. I am not sure why you care so much about my opinion now, but when I questioned your reasons for the amazingly invasive (again - my point of view - obviously not yours) "procedure" on my son, you blew me off completely. I can't believe that it took this blog to get your attention. Amazing. Most doctors, I would think anyhow, would let such words role off their back and reassure themselves that they did in fact do what's best for the patient. But not you. You needed to confront me and destroy the tiny amount of trust hard earned by your nursing staff and tell me, "no one wants to care for my children." What exactly did you expect to gain from such a statement? My problem is with you sir, not the nursing staff. In fact, I have complimented many of them - again, not using names - but the vast majority of them seem to love their jobs and patients. It took awhile for me to get this system down but once I did, I believed that I found common ground with the staff - as in, we are all here to get our children out of the NICU and home with their parents - as quickly and safely as possible.

I find it amazing that we were at a hospital for 3 months prior to this. Every one knew about the blog - and I mean everyone. It is widely understood that this is simply a journal of my thoughts. I've not had a problem with it until now.

So, if you'd really like to judge, please do so. If you think you're in a good position to evaluate my reactions and critisize them- or compliment them, go right ahead - anyone can comment here - and you can do it anonymously. It is not my children who write this. I am the one who needs to vent and has decided that my outlet be this blog.

To the person catty enough to spread the news of the blog. Mission accomplished - my goodness - I wasn't hiding! The proper authorities are aware.

Wednesday, July 15, 2009

My Breast friend

So on this the 87th (I think) day post triplet baby birth, I Heather, officially breast fed the babies FOR THE FIRST TIME!!! I can't believe it! They BOTH latched on and everything - ok - David needed the nipple shield but he did FANTASTIC!! (they both did).

So I'll tell you the story - because I've told just about all of the other stories there have been so why hold back now right? If you are squeamish about the topic of breast feeding, or just don't want to hear it, feel free to stop now - no offense taken. If not, read on my friend...

I came in this morning to David being freed from his feeding tube and being put in clothes. So, both babies are in clothing (David is borderline with his temperature and he may need the warmer again but we'll see), and both are free of feeding tubes. The only stickers they have on them are the ones to monitor heart rate, respirations, and oxygen saturation. YAY!!! I asked immediately about co-bedding them. I was told that it would be arranged and they would be put together either today or tomorrow depending on how David's temperature holds. I then asked if I could meet with the lactation consultant for a lesson on breastfeeding.

At 3 pm, I was in a rocking chair with a GIANT pillow frisbee looking thing with the name "my breast friend" printed in large block letters on top. It was strapped secruely around my waist. An older lady with Clairol red hair was at my side sort of leaning over my chest (the only reason I know about the Clairol part is because she saw Mary Louise's hair and exclaimed, "Oh, I have to rely on my clairol to get that kind of color," and patted her own hair proudly). She took Mary Louise in her arms, turned back to me and said,"well, get those clothes down!" I said ok -rather surprised at her abrupt nature and pulled down one side of my shirt. She plopped Mary Louise down on the flying saucer and grabbing my hand, placed it at Mary Louise's neck and said,"hold her here, NOT her head." She then grabbed my breast and started sort of jabbing Mary Louise in the face with my protruding nipple. She said, "oh good, your nipple isn't introverted. That means it doesn't poke in." She was still jabbing even though Mary Louise was blindly trying to catch the moving object in her mouth. I was having one of those out of body experiences as if I was standing across the room watching everything from afar. It was really rather hilarious. I had a big silly grin on my face as if I was getting a present I'd wanted for a long time. The fact that my breast was being yanked and jabbed in all different directions by a geriatric Jesibelle looking woman was of no consequnece to me. I was about to breast feed!!! As I watched poor Mary Louise though, I giggled, out loud. All I could think of while she was getting bombarded with my body parts was the Christmas Story movie - "You're gonna put your eye out kid!" - Anyhow, she finally was able to latch on and the real feeding began!

I started to tear up. I was just so excited.

After a while with Mary Louise, it was David's turn. I sat by his bed and waited again for the plop and jab to begin (whatever works right?) David had trouble staying latched on so we tried a nipple shield. With that, he actually did a bit better than Mary Louise. Now, if you can picture his tiny size for a minute. While feeding on one breast, his toes hit the inside of the other one - does that make sense? Anyhow, the lactation consultant thought he was so amusingly small and feisty. (and he did look just precious in his dinosaur onesie).

I pumped after their feeding and suddenly produced 8 more ounces! Ha - I'd heard that skin to skin contact helped production, but I didn't think it worked in an hour!

I fed them again for their 6 o'clock meal and they did just as well. I used a nipple shield with Mary Louise as well and she did much much better.

Anyhow, that's the story! I must get back in there. Shift change is over!


P.S. David has not had blood in his stool for 2 days now.

Photos photos - way too many photos!!

06302009 07042009

The above link was already posted but the photos of David after surgery did not upload for some reason so it's a repeat.

David and Mary Louise's eye surgeries - July 2009

The above link is 500 photos - so it's a big-un. It's what we've been doing since the transfer to New Orleans - it includes Mary Louise's surgery - oh and David's new doggie warm blanket. It also has photos of Brent's grandparents seeing the babies for the first time - such a special time! They were so proud.

Tuesday, July 14, 2009

Ma Mere's photos

Ma Mere's photos of the babies - 712-714

These are the photos Ma Mere has taken so far - there are some of Mary Louise and David in their first outfits.

The babies will be here another week. They will both be rechecked on Tuesday and HOPEFULLY be sent home then. David has a questionable spot that the doctor hopes won't get bigger but isn't sure.

Breathe Heather Breathe...

Monday, July 13, 2009

ok the story about David's poop

It is thought that the blood in David's stool is from his spontaneous perforation and consequential surgery to repair said perforation when he was 10 days old. His bowel was resectioned (AKA cut and pasted) for the surgery and the doctor (yes the rectal exam doctor) thinks that as he is growing, an adhesion has let loose and the repaired area is stretching causing small amounts of blood in his stool. I am hoping that he is discharged by the eye surgeon tomorrow or the next day, sent back to Lake Charles and is re-evaluated there by his original neonatologist.

As for transferring them - the eye surgeon will not go to any other hospital which is how we ended up here in the first place. He is the one who follows the cases in Lake Charles and will see them through their first years - every few months for exams. We were told he was the best - we could not have imagined the nightmare we've had in the NICU but the babies will be discharged as soon as they are cleared by the surgeon and will be shipped back to Lake Charles at that point.

Mary Louise was extuabted last night. She is doing well and is almost back to full feedings and nippling already. She even wore her first outfit today!! My beautiful girl is back! David is doing better each day. Tiny amounts of blood in his stool still appear sometimes but not near what was there to begin with. The rectal exam caused a tear which is healing. I plan on writing a letter to the state medical board if you're wondering as I feel our right to refuse treatment was violated. It probably won't go anywhere but will have to be reviewed and may make him think twice next time he gets a bright idea like that.

Poor Brent had to go to work for a few days. Today is the first day he's missed seeing his little ones and I know he's just so sad about it. Ma Mere (his mother) is here with me until he can return. She rocked David after his feeding last night and he fell fast asleep in her arms for hours. I was so happy to see him sleeping so well.

As for the breast feeding. No worries all la leche leaguers!! I will breast feed for a minimum of one year - one way or another. I have asked about the possibility of food allergies for our little ones. As David is getting better (and food allergies rarely appear so early - which does not by any means mean is it impossible - only rare) I will maintain my generally healthy low sodium low spice diet for now. If you're concerned about dairy - no worries there either - I've never been a huge dairy person anyhow. I plan on following up with the neonatologist in Lake Charles as well as their pediatrician.

Also, David does not have intussuception, a blockage or NEC - they have all been ruled out with tests and the famous rectal exam - but were at one time a consideration.

I think that covers the questions? If there are any more, please write! Fabulous discussion started - ha - I had no idea until Brent started calling me today with comment updates. Thank you for all of the suggestions - and of course for reading!!

We were all able to smile today (me and the babies - and of course Ma Mere) for the first time in awhile. (yay)

Love, hugs, and baby kisses!

Sunday, July 12, 2009

and how would you like that Mary Louise cooked ma'am?

So I was sitting with a fussy David last night rocking him and looking at Mary Louise silently begging her to wake up. I saw her little arms flailing overhead as if she was finally awake and stood to look at her. She was red down one side and the heater on her radiant warmer was still heating at 100% (it is supposed to adjust with her body temp). The nurse had repositioned her and forgotten to reposition her temp probe so she was lying on it. Now, usually if this happens, the baby gets cold because the probe is under a blanket or a warm body and there is a false high reading. However, in Mary Louise's case last night, for some reason the machine thought she was cold and was therefore heating her up to a nice vibrant red.

I repositioned the probe and took her temp with my free hand- all with David in the other arm. Mind you no nurses (especially not hers) were to be found. She was way over normal temp. My baby was cooking while I was sitting right there!!!

The probe re-read her high temp and finally alarmed and a few minutes (I did say minutes) later the nurse sashayed round the corner to find me glaring in her direction over my red baby while putting my cold hands on her little arms to cool her. I finally told the nurse she was overheating and the probe had probably gone bad. SHE ARGUED WITH ME! Ha - even though it was quite apparent to any moron that Mary Louise was in fact hot and her temp was in fact high, the nurse argued with me and said it shouldn't be necessary to move the probe everytime she moved Mary Louise. That that simply was not how the warmer worked. I said that regardless, she was overheating.

Long story short? that stupid pain in the ass nurse argued with me once more when the damn warmer started to heat her again. So Brent and I stayed there most of the night to do nothing more than watch over our little ones.

She is still on the vent today and I am sitting in the waiting room typing this during their shift change. I was just told by the nurse that the residents are in charge tonight and they "don't want to extubate her". Fantastic - another brawl's a brewin'.

Love, Heather

P.S. little david is doing about the same. Much fussier today than yesterday but has been able to sleep quite a bit as well. He took all of his bottle this morning with me (did the same yesterday) but the evening bottles seem to be what gives him the most trouble - we'll see how he does tonight. He is still having blood in his stool and they sent cultures off this morning. I don't even want to think about a positive result and all the fantastic treatments that go along with it. Will let you know though (of course)...

Saturday, July 11, 2009

sleeping beauty

Our little Mary Louise is still deep in slumber and I'm so upset I can hardly hold a conversation with the nurses anymore. They tried telling me today that some babies just have trouble processing anesthesia. I nearly ripped the weekend nurse's head off with my response -"it's not that she's having trouble processing - it has nothing to do with her body - she's been OVER-DOSED!!" I'd like for the anesthesiologist to go to sleep each night with a picture of our little baby girl the way she is now - swollen, fluffy because of the fluids running in place of the breast milk she should be eagerly drinking, with tubes and IV's covering her arms and face. I would like for that picture to be right next to one of her just before surgery - with her paci in her mouth, red hair in a fluff of little curls on the back of her perfect head with her beautiful hands around my finger, gripping happily. I wonder if they would think about it the next time they were in on a surgery with a little baby - I wonder if they would think twice before pushing that extra dose- or at least re-check their damn math.

David is still having blood in his stool but it is less than before and the stools are much less frequent than before. I nippled him this morning and he took the entire bottle - YAY! He is slow and difficult to nipple but he gets it done eventually. He's resting more easily now as well which is nice. We can only hope he continues to improve.


Friday, July 10, 2009

Mary Louise got snowed (and so did we)

So Mary Louise is still on the ventilator and David is still having blood in his stool (despite his very short hiatus last night).

Mary Louise can hold my finger when I press her little palm and cries a bit every once in awhile so she appears to be trying to wake up but she is definitely having lots of trouble maintaining breathing during sleep. About every 2 hours someone walks by and looks at us and says,"she just needs a little longer and we'll pull that tube." Ha - we've been hearing that since 9pm last night - I must say that my patience is wearing very thin and as much as I'm trying to suppress my crazy nurse mom side, it's beginning to shine through once more. As if we needed confirmation that she'd been over dosed with anesthetic, the resident for the night shift came by, said the typical,"we aim to extubate her shortly," and then said, "wait, she had this surgery yesterday. Has she not woken up at all yet?" He checked the chart, noticed that she apparently extubated herself during the surgery, they re-intubated her and apparently dosed her quite nicely with sedatives. His exact words were,"oh, she got snowed." Thanks schmuck. Needless to say, I definitely drilled the anethesiologists yesterday on the oddities of our children - and their trouble with anesthesia. Their response? "She's 4 pounds! We've treated 800 gram babies before. She'll be fine - she's huge." I would like to find them and possibly their vehicles and slash their tires (would that be inappropriate - over the top perhaps? hmm - I think not).

David has continued with his intestinal issues. The blood in his stool increased this morning and in questioning why, I found out that he had had a very special time with the doctor during rounds. He got his very own rectal exam. Those morons thought that the thing to do to a 3 pounds baby with blood in his stool was a RECTAL EXAM?! REALLY?! Ok, I must ask, first of all, how much can you feel with a GIANT pinky finger in a 3 pound baby's rear? Second, as if it didn't occur to them that doing such an invasive exam would do absolutely nothing treatment wise and only worsen the symptoms he was having. Are you kidding me?! Also, I asked that they not give him any more reglan - which they for some ridiculous reason started 3 days ago. Side effects include depression and increased GI motility (uhem - diarhea) So I gently suggested that they not give it for at least a day to see if his symptoms would subside. It was then that I found out that he has a rectal fissure (another apparently "common" issue with preemies). There is so much wrong with the communication ladder in this place that it's hard to know where to begin. But I'm really getting annoyed with learning things on the fly. So I asked to speak with the resident in charge of his care (if you're wondering, the cheif neo was not there). The resident (complete with a way too cocky and over-confident attitude) agreed to stop the reglan then told me that he was fussy because "he just needs a little TLC". Again, REALLY? you're going to suggest a little snuggle time for a baby whose parents are holding him approximately 8 to 12 hours A DAY? I suggested that she stop worrying about the chart so much and actually look at her patient more than once a day. Then said, "it may not mean anything to you, but I must tell you that there is something wrong - he is not the same baby as he was 3 days ago. This is just not my son."

Frustrated and scared but keeping it together. Will update if things change.

Love, Heather

Thursday, July 9, 2009

As I sit

It is half past ten and we are eagerly awaiting Mary Louise to awake from her surgery. It has been six hours, and she is still out. Her eyes continue to swell as time goes on, and Heather has warned me that they will continue to swell through tomorrow. I am sitting on one side of her bed and Heather on the other with David sleeping soundly in front of us. He just couldn't let his sister have all the attention today so he ended up having a blocked bowel that caused a little blood in his stool. When we finally got back into the NICU at 8:30pm we found out that he had finally had another poop, and it was all clear of any blood. Thank God! We were praying that it wasn't another perforated bowel. He is now sleeping so soundly, and we believe that this was the cause of all his fussiness yesterday. What a day! Hopefully they can extubate Mary Louise tonight or in the early a.m. Lets keep or fingers crossed that she recovers quickly, and our little girl is back to her normal funny happy self, sticking her tongue out at everyone.

Thanks for all the prayers!
Mary Louise and David #2

These are the same days for David. Brent's parents sent these photos out. Enjoy!

new photos

these are a bit behind - Brent brought the cord, etc. with him so we can now download our new photos. I'll catch up over the next day or 2. This is David's transfer here and just before his surgery. The eye surgeon just let us know that Mary Louise did well during the surgery and he did not have to use any cryo-therapy which increases swelling and healing time (David had it in his left eye.)

Thanks so much for the continued prayers and such huge support for our family!

Love, Heather

06302009 07042009

confusing morning

We were to meet with the Occupational Therapist this morning to work on David's sucking. On our way, we got a call from an anesthesiologist - not the one doing Mary Louise's surgery (no that would make too much sense right?) - but one that "was sent" to discuss "the procedure". Umm- except he didn't know which of our babies he was to discuss (I tried to help him out and finish his sentence with Mary Louise but he argued with me and said - no I'm calling to discuss David). After getting a little frustrated, nervous and very confused, I explained to the guy that we'd be there in a moment and he'd just have to wait to discuss things any further. He seemed happy to oblige.

Now, let me just say that I have a soft spot for medical students as I remember very clearly being in clinicals for nursing school and one of my younger brothers just started med school. Having said that, get your uhem - shit (sorry but that's how I feel) straight prior to calling a parent - ESPECIALLY when trying to put their baby to sleep!

When we entered the NICU, our little David was wrapped up being held by the occupational therapist and our fussy little Mary Louise, who hadn't eaten since 6 this morning was sucking as hard as she could on her pacifier and getting very disappointed that there was nothing good coming out of it. I noticed that David looked very pale and tired but addressed the anesthesiologist first as he was patiently waiting and eager to "discuss" the consent form. I quickly told him that I liked to meet the people who were to work on our babies and as he couldn't answer ANY of my questions concerning Mary Louise's care, that I wanted to have a meeting arranged prior to signing anything. Quickly, a time was set - we would wait until they came to get her. Ok, that done. Now David...

David had blood in his stool this morning. (Looks as if we'll have to take up open celebrations of poop once more). They held his feeding this morning, did a KUB which is a sort of x-ray which came out normal. The neonatologist came to make a rare appearance to speak with us. He had consulted with a radiologist about the KUB and they found an area "of concern" that they think is just a bit of stool. So, we fed David with the occupational therapist's help. He was exhausted but did very very well - he paced himself, stopped to breathe and finished the entire feeding! Way to go little guy! The concern with his intestines is the possibility of intussuception which is a telescoping of the intestine (it sort of slips into itself) although both neonatologist and radiologist do not think this is the case. They think the more likely issue is that an adhesion where his intestines were repaired has sloughed off causing the gassiness (of yesterday) and blood tinged stool (this morning). The hope is that with feedings he can pass the stool and the adhesion will just heal over again.

I quickly informed both the nurse, occupational therapist, residents and neonatologist of David's history where major problems have occured. They are all aware that he tends not to show symptoms until the problem is rather severe and have all been put on alert to watch him closely and act quickly should any further intervention be necessary.

Mary Louise was taken to surgery at about 1:30. I did in fact get to meet the anesthesiologists (there were 2) just prior to Mary Louise's surgery. Will update later when we hear more.

Love, Heather

Wednesday, July 8, 2009

fussy fussy fussy day

I should never have mentioned a decrease in little David's tantrums! We have switched off with holding him all day today and each time we stop patting him or rocking him, he wakes up and screams! Poor little one - we are of course happy to oblige his demands for attention but I am worried that I'm missing something that's wrong - he's never acted this angry before. I'm hoping they increase his feedings again - putting him even with what he was taking in when he got here - and that will make him a bit happier. He did well nippling his feeding this morning and will try twice daily with the nippling now. We found out that he has a short frenulum (the little piece of skin under his tongue connects it too far forward - basically, he can't stick his tongue out far enough). So, he needs a little extra chin support with feedings as he drools alot and has trouble latching onto the bottle.

Mary Louise has also been fussy today - not near David's levels, but fussy all the same. The physical therapist is trying some new athletic tape type stuff (I've seen it on athlete's shoulders recently) to try to help her hips as they turn out far too much. It is a matter of getting the babies to use the muscles they haven't really "found" yet - all of the extensor muscles down their fronts. Rather than getting into the fetal position when stressed, our little ones stretch out and arch their backs so the therapist is trying to develop muscles they haven't had to use before. All of this is due to their untimely birth of course. She is doing very well nippling all her feedings - Pop even fed her today and did such a wonderful job burping her! (an area I have not yet mastered - but Brent and his Dad got right away).

MaMere held David for the first time - and even on his fussy day he calmed down for his grand-ma-ma!

Mary Louise will go to surgery in the early afternoon tomorrow. I feel a bit of panic coming on but am trying trying to keep it together.

love, Heather

Tuesday, July 7, 2009

Mary Louise's eyes

Mary Louise will be scheduled for surgery on Thursday. She is stage 3 in both eyes with borderline plus disease. I'm not sure what time the surgery will be but will be sure to let everyone know as soon as we find out. She is doing well otherwise and he rash, blisters and cut on her cheek from the Tegaderm is finally healed - only a shadow of red left now in the worst areas.

The nurses have warmed up to us and all come to check on our little ones frequently. We seem to have finally found our niche with them. This is definitely a different system they have here - we have very little access to the actual doctors here - a HUGE change for us. But, we are making do and as I've said before, the physical therapist here is fabulous with both of our little ones. David is already moving differently and is having fewer fits and temper tantrums as well.

The occupational therapist here is also wonderful. She has been working with David's swallowing and this morning, he successfully nippled his entire 18 ml feeding!! We are so so proud! He is only nippling once a day now and still needs a bit of practice but we all know how determined our little man is and know that he will quickly master his newest task.

David had his first follow-up eye exam today. So far, so good with him. He does not need any touch ups and will be checked again in one week. (YAY - you may all do happy dances now!)

Worried about Mary Louise's pending so proud of David's wonderful progress! and of course, thankful for every moment we have together!

Love, Heather

Who Knows

Yesterday, we had some great visits from my grandparents and parents, and Heather's brother Sean. My grandparents had the chance to see their great grand babies, and were in awe over the precious little babies. David didn't wake up, but layed their being his cute little self, and Mary Louise was wide eyed and a little fussy while she tried to get herself comfortable. She is becoming a wiggle worm. Our visit was cut short because they were getting an admit in, and they close the whole unit for that. We understood, and everyone got to spend a few minutes with the babies. It is a little harder here, because we can only have two people in the NICU at a time, and one has to be a parent at all times.
Mary Louise's surgery was postponed pending check ups, but the doctor did not show up yesterday evening to do the exam. So those of you that know me, know I am pissed, and those of you that do not know me, I am pissed. The fact that we had this need to fly Mary Louise to New Orleans on Saturday July 4th, only to get here and have the surgery postponed because he now says the disease is only borderline. The funny thing is that the Doctor was in Lake Charles all day yesterday doing eye exams on all the NICU babies, and Mary was originally scheduled to see him in Lake Charles yesterday until he deecided to transfer her to tulane. This is just a really frustrating time, and my patience is wearing thin.
The doctor is scheduled to re-examine David today, and make a decision whether he has to go back and touch up some spots on the eyes. Hopefully he shows up today and takes a look at Mary Louise while he is here. The other problem is that he comes during shift change and we do not have a whole lot of access to him. So tonight sometime between 6-9pm he should come in to do his exams.
last night Heather and I spent a few hours rocking babies, and it was very theraputic. Both Mary Louise and David look great and are doing well. They both continue without any oxygen or breathing support, and look happy. Mary Louise continues to make her funny faces, and David pops a smile occasionally, when he isn't sleeping or fussing. Both babies are amazing, an the Nurse Practioner just stooped me to tell me that both babies are beautiful and she is in love with David, and is it okay if she spoils him a little bit.
Will update on the eyes when we have more information.

Sunday, July 5, 2009


drum-roll please.......this just in - Mary Louise is 4 pounds!!!!! WOWEEE! I can't believe it! so so so exciting!

Brent is there now - he took my little brother Sean in as we can only have 2 people at a time and one parent must be there at all times when visitors (other than parents) are there. He phoned from there to tell me the news! (We didn't know that no one but parents can go after 9pm which is the time now so they will have to come back to the hotel shortly). Tomorrow, we are "moving" to Brent's aunt and uncle's house which is about 15 minutes or so from the hospital. (thanks so much!)

In answer to some questions: the babies are in radiant warmers - the open warming beds which as far as temperature act much like incubators but the babies are easier to get to as they are a bit more open. Therefore, they are not in clothes yet - only diapers and blankets. They both maintain their temperatures quite well when we hold them for longer periods (an hour or more) but eventually need warming. The nurse practitioner is planning on putting them together (co-bedding) (once we find out about Mary Louise's eyes) to help them grow and maintain their body temperatures better.

As far as donating breast milk. I have already asked - there are no donor banks in Louisiana. I know I may need the extra milk eventually (believe me, I'm not over-producing - they just don't eat very much yet) but would gladly donate some in this instance. Alas my sweet LA is a bit behind in that respect. The closest donor bank is in Austin, TX. Furthermore, donor banks don't take milk that is already pumped - it is only accepted after intense testing on the mother is done (absolutely understandable). I'm not sure what I'll do, but I refuse to pump and dump - I work to hard to get that stuff in the first place to just throw it out. For right now, the hospital is still taking it though and the babies are eating more each day so hopefully things will work out.

After all that worrying about being able to produce enough and now I'm worrying about where to put it all! How silly.

YAY!!!! MARY LOUISE IS 4 POUNDS!!! (just had to say it again)

Love, Heather

many shades of blue

Mary Louise and David are both doing well in their radiant warmer NICU beds. Brent is here now and our little family is together again. Mary Louise's eyes were examined yesterday and the doctor then decided that he would post-pone the surgery for a day or 2 and just keep examining here eyes frequently. OK, one could ask,"why would you demand a holiday, weekend emergency air transport if it was not in fact an emergency? Why would you uproot the other half of a family that has already been through so much if it was not necessary?" I won't ask these questions however, because that will surely drive me (the rest of the way) insane.

So, we are all together again in the little Tulane, Lakeside hospital. I would like to graciously commend the night nurses from the last 2 nights as they have been incredibly attentive in taking care of (me and) David and Mary Louise. I can't believe they got me to go back to the hotel to sleep before 1am - 2 nights in a row! David's nurse sings to him and pats him until he falls asleep. Mary Louise came here with a huge rash due to the Tegaderm that was (YET AGAIN) plastered all over her tiny chest and her nurse began care for that immediately - without me even fussing - and posted signs all over her bed and chart not to use that product anymore. After a very rocky start, we have hit a rather smooth patch.

David is off of ALL respiratory support!!! For the first time in all of his 76 days, I got to see his face!! I am so so excited for him. It's so quiet around his bed now - I wonder what it sounds like to him. He is doing well on feedings (thank goodness for that because I seem to be flooding their NICU with milk - I don't have any other place to store it and I hear their freezer is quickly filling up). He is still being gavage fed for now but the occupational therapist here has plans to work with him next week on nippling. Exciting progress for our little guy. He is now 3 pounds 5 ounces. He was started on diuretics again yesterday for his lungs so he will probably loose a bit more weight, but he is making good progress all the same.

Mary Louise nippled all of her feedings last night while we were there. Unfortunately, both she and David have apnea of prematurity and sometimes stop breathing during feedings so we must be alert for signals of distress at all times. No parent should ever have to witness their child turn blue - multiple times - in the same day. My poor mother couldn't stand it. I must admit that it is hard to remain controlled and calm while my babies just go limp in my arms. All I can do is sit there, stimulate them, and try to get them to take that breath. I'm hoping that with a little practice and time, we can all learn how to minimize their episodes and they will eventually grow out of them altogether.

Mary Louise is 3 pounds 14 ounces.

Off to the hospital!

Love, Heather

Saturday, July 4, 2009

ambulance chaser!

So Mary Louise has arrived at Tulane Lakeside Hospital. We were actually asked to leave the NICU when she was on her way - ha - the nurse said that they have the policy that all visitors (including parents) must leave the NICU for all admits - even if it is the parents' child that is being admitted. (does all of that make sense?). So my big beef with this NICU (as I seem to have become quite the NICU / hospital connoisseur these days) is their ridiculousness about closing the NICU for any reason at all and for at least twice as long as need be. So today for instance...their shift change in the morning is from 6 to 8:30 am, then the doctor does rounds - through 3 sections of NICU from what I can see - and we are not able to go in. Rounds have taken anywhere from 2 and half to 3 and a half hours in the days since we've been here. So, typically, I can't see David until at least 11am. Today, there was an admit so I couldn't see David until 1:30. Then, at 4 we had to leave again for Mary Louise to be admitted - even though I told them that she had just left and wouldn't be at their facility for another 1 and half to 2 hours. ha - what a racket!

Anyhow, after Mom and I were booted for Mary Louise to eventually be admitted, we went to lunch down the street from the hospital. We were driving back and I was picking up the phone to call the NICU to ask if Mary Louise had arrived as she was supposed to be there soon. I happened to look 2 cars in front of me to see an ambulance with a turn signal on going in the direction of the hospital. My mom said, "I wonder if that's her." The strangest feeling came over me - I swear the car drove itself into the hospital parking lot and my heart pounded as I watched a tiny baby being carefully unloaded in a big plastic incubator in the ambulance bay. My mom yelled, "Heather, that's her!" It was as if I had blocked out the fact that she really was coming here until that second. I started running towards the ER doors and to the elevator we had come down with David when he had his surgery. I thought,"I know they have to use this one." I stood there like a crazed animal waiting to pounce (ha - what I thought I was going to do I have no idea, but my feet would not move from the elevator doorway.) The nurse and 2 ambulance crew members brought Mary Louise around the corner from a hidden hallway and I rushed up to the incubator and just stared - I wasn't even breathing. I must have looked insane. The nurse was so startled that it took her a second to say,"can I help you?" I barely glanced at her and said quickly,"I'm her mom." It was all I could do to keep it together enough not to open the incubator and snatch her up in my arms. She was beautiful - like a tiny china doll. I must have been convincing with my hard stare at Mary Louise because without another thought the nurse said,"ok, you can ride with us in the elevator if you'd like," then added," she did just fine - slept the whole way," and smiled. I watched them head to the NICU and waited in the hall while they got her settled. It was then that I realized I hadn't taken a proper breath in awhile and sort of hyperventilated and burst into tears.

My mom burst out laughing later at the scene I'd made. I suppose I could have been anyone - and I wonder what the nurse was thinking - "that crazy momma has been just standing there waiting all day?"

So, now I'm an ambulance chaser - and I continue to be my own source of comic relief in this crazy crazy blip in our lives.

Mary Louise

Mary Louise will be transferred here at 1pm via helicopter. Her surgery will be on Monday afternoon.

Friday, July 3, 2009

Mary Louise's eye exam / David's feedings

Mary Louise has stage II retinopathy of prematurity with plus disease. This means that her stage of ROP has stayed the same, but the abnormal growth of blood vessels is pulling on her retina putting it at risk for detachment. In short, they are trying to get her transferred to Tulane tomorrow (on a holiday which is why I said they were trying) or Sunday. Our regular doctor is upset as it was apparently his opinion that they should have been transferred together to begin with. Having been here with David and without half of my family these last few days, I can't say that I disagree with him if she was to end up here anyhow. Hind sight - 20/20. Whatever.

David was started on 5mls. of breast milk every 3 hours today. He seems a bit happier already although he continues his tantrums every couple of hours. He has started to open his eyes a bit. They are not that swollen anymore but are very red and watery and seem very sensative to light. I keep them covered as much as I can with his little hats. They don't put any shields over them as he can't have any pressure on them. So I put newborn sized hats on him to shade them as they are way too big. Anyhow, it works.

He started apneic episodes again post feedings and was restarted on caffeine which the NNP had apparently discontinued for surgery and not restarted yet. Hopefully that will do the trick and he will remember to breathe when he sleeps!

I'm totally exhausted, and my heart aches for Mary Louise. I realize that I'll have my family together again but I have to say that given the choice, I would have endured here with little David knowing that Mary Louise was in good hands in Lake Charles. No matter what I'd chose now anyhow. I must refocus on thinking happy healing thoughts for Mary Louise - and maintain what I've already been doing for David of course.

trying to hang in there

David is doing his best to heal. He actually looked much less swollen last night when we were there. He continues to have temper tantrums and I can't say I blame him - he's hungry and tired and swollen. He tries to open his eyes but it's impossible - they are too swollen and have discharge that sort of glues them shut. I'm told it's all normal. Last night, David and I rocked until 3am. He finally settled down and I went to get a little sleep then. I'm sorry to be unable to post photos of all of this until I get back but they are coming.

He seems to be doing well on the nasal cannula although they are not near as aggressive about weaning here. I finally had a sit down with the sweet nurse last night about their criteria. She was patient with me as I explained my intense need to understand the rationale for all decisions about David.

Mary Louise has her eye exam today. Waiting to hear results. I'm so pulled between the two of them and miss Brent terribly but I know he is doing his best there with her as I am here with him. We will all be together again soon.

Off to the hospital again.

Thursday, July 2, 2009

Mary Louise and Dad

Well Mary Louise and I have had some quality time together. I am guessing after all of this she will definitly be a "Daddy's girl" and David will be a "Moma's boy". I will do everything in my power to make him a tough little moma's boy. Can't have his big sister protecting him all the time.
Mary Louise was really fussy yesterday, and has not been taking all of her bottle feedings, so they have put the feeding tube back in, and are giving it to her that way. I did sit with her for 45 minutes last night to get her to take the full 34cc bottle. I finished feeding her at 6:30pm and when I went back at 7:45pm they were setting up to feed her again. They pulled her risidual and couldn't believe how much she had not digested yet until I told her night nurse that she was feed late and it had only been an hour and a half since I finished feeding her. So we tried anyway and she took 6 cc's and feel asleep on me. I rocked her for awhile and then put her back in her isolete because she was desating due to an overfull belly. She was sleeping when I let at 9pm. I didn't get to bath her, because her night nurse was called in to cover for someone, and was behind, so maybe to night i can bathe her.
Heather is doing a great job being "Crazy Nurse Mom" in New Orleans. She is just used to the great staff at Women's and Children's and having a hard time adjusting to this other staff. She is definitly paying attention to everything they are doing, and That's why I married her. She cares more than anyone I have ever met, and I couldn't imagine having anyone else over there taking care of David.
We are holding it together, and bickering a little bit due to fatigue and stress. It is hard communicating such emotions to one another without out getting aggrevated some times, but we are doing well and calming down and updating each other on the other babies happenings. We will get through this.

Please continue your Prayers!

another late night

David was extubated at about 10pm last night. I went to see him again after shift change. He is in his own little room which is nice as it can be darkened (when we ask). He was much happier after we asked the nurse to dim the bright fluorescent lights overhead.

When we walked in, he was really just waking up from the anesthesia. I was happy that we were there and I was able to comfort him and talk to him best I could. He looked as if he'd been in a prize fight but the swelling is normal and we were warned that it may get worse before it gets better. Sweet David. He was still sucking while drowsy or sleeping - after all he'd been through, he was still hungry!

We left at 1am. His bowel sounds were good but he was having a bit of reflux of bile and they were holding his feeding until it stopped - there wasn't much really. I expect that they fed him not long after we left. He was doing well on high flow oxygen via nasal cannula and his blood gases were leveling out nicely and they were planning to wean as tolerated. I was told I should be able to hold him again today.

I've noticed that many times, we are the only visitors in there and am beginning to understand that they just aren't used to somewhat overly involved parents. We got there on the last day of the month and Dr.'s and residents are on monthly rotations. So, every one we met the first day disappeared and whole new group came in. I'm glad I know so much about David's history however, because I keep getting asked very specific questions such as what medications was he on - and comments like "I didn't know he had a history of benign seizures and abdominal surgery." I feel the entire patient wasn't really considered - he was transferred for his eyes, yes, but he needs intensive care otherwise. Maybe we'll find our little niche here soon. He will be rechecked on Tuesday but regardless of the result, he will stay here another week or so afterward for healing and a second recheck to ensure no further intervention is needed.


Wednesday, July 1, 2009

David's eyes and Mary Louise's tummy

Mary Louise has apparently been fussy today and has earned herself another feeding tube. She has not taken all of her feedings and lost weight last night. Brent went this evening to feed her and although it took quite a bit of effort, he got her to take her full dose of milk by mouth. WAY TO GO DAD!! He was going back to bathe her after shift change when I spoke to him a little while ago. She had another eye exam today and will have a follow up on Friday. Her eyes are still a stage II and the ophthalmologist remains hopeful that they will continue to grow without the need of transfer and surgery. He will see her in person in Lake Charles on Monday (unless she is transferred before then).

David got out of surgery at about 6pm. It went well according to the surgeon. He was satisfied that he'd gotten all of the dysfunctional areas of his retina and will check it again for need of touch ups on Tuesday (after time is allowed for healing). In the meantime, he is on the ventilator again and will be weaned as soon as possible.

I have to say that this was one of the most trying days for me. I had to watch as David's eyes were once again dilated which (again) caused his heart rate to drop. He was fed at 11am and then held NPO until surgery. Around 2 he became fussy. Around 3 I had to put him down (I had been holding him since about 12) and he became inconsolable. He is easily one of the smallest babies in the NICU and definitely earned the title of loudest crier today. I'd never seen him like that. It was so awful that at one point, he was wailing and I was flooding my dress with tears as well. My mom was consoling me while I was consoling David (who as I said was just hungry and inconsolable). I couldn't hold him as they were getting ready to take him to surgery and I couldn't feed him. UGH! I'm sure we were quite a site together he and I. We followed anesthesia down to the OR waiting room and I had finally gotten myself together when the anesthesiologist turned to me and said, "this is goodbye time - hugs and kisses." I burst into tears all over again. We must have made everyone concerned - the anesthesiologist came out just after the start of the operation to see if we were ok and Dr. Gordan's nurse graciously allowed us to have a quick peak at David when he was brought back - even though it was shift change (they are very strict about their shift change here).

There were quite a few upsets in between all of the happenings listed above, but that's the gist of it. Back to the NICU to our little David. (shift change is over).

I feel as if we're moving a bit backwards now - and am in a bit of disbelief about David needing ventilation again. We'll get through this as well though.

Love and thank you thank you thank you for the prayers.

Eye Surgery Today, Not Tomorrow

David's surgery was rescheduled for 3:30 this afternoon because a spot opened in the operating room. We are staying many hours at the hospital; therefore, I will update you when we return to the hotel room. Sorry that we will be out of touch for a while. Please pray very hard for our little David. I must say Dr. Gordon's nurse has been wonderful in her attempts to try to calm me down but good luck to her... Will be in touch soon.