Happy Birthday Daddy!

Madeleine and daddy are celebrating birthdays today! Late last night, we went to have a short visit with Peanut and had planned to come home and get some serious sleep. Tim worked hard all day and I have just been running here and there for 2 days...and we're just...tired. BUT...plans change. Madeleine decided that she wanted her daddy to hold her, and that's just what happened. The best birthday present a girl can give her daddy!

More cool things happened tonight too...she got a different isolette. Not only a CLEAN one...but a bigger one because she graduated out of the ELBW bed! (Extremely Low Birth Weight) Madeleine's nurse informed us that Peanut can wear clothes now...do you hear the trumpets sounding? Let the shopping...BEGIN!!! I've been holding off on buying her clothes because I didn't want to get things she'll outgrow before she even wears them?! And she's been given some outfits already, but those are bigger and she'll have to wait until she "busts out" to show those off. We can also take blankets in for her too if we want...our stuff, our smells...our all-natural dye and perfume free detergent!!! Even though whatever they use at the hospital smells really nice...because it has no "scent".

Life is good with miraculous Madeleine.

"The eyes *don't* have it"

Little Peanut is shaking her fist at me wanting to know why I haven't worked on her room yet?! She's warning me that if I don't get to it...she'll be home before I know it and her room will be u-g-l-y. I've picked the colors, Peanut...but I'm a long way from painting.

Madeleine had a slight dip last night...she was just "unhappy" and was desatting...her blood gas came back with the co2 in the 70's again so they gave her a bump on her vent...she was back up to high 50's on her oxygen again...and they said her right lung was just collapsed a little bit. The doctor that's on the next few weeks is one of our favorites so far, and she wasn't worried about it being something that won't work itself out. She's been right on about everything so far, so it gave me peace of mind to hear her opinion. She said that she is very happy with how Madeleine has been progressing and given this doc's' skill at seeing the big picture, that was nice to hear.

Peanut had that eye exam today...as previously stated, I was not looking. In fact, I think she got it about the time I was making jewelry with the girls this morning. The results were that her eyes are "premature" which is normal right now, and so far, she doesn't have the eye disease yet that preemies are prone to which causes blindness. She said that if she'll get it, it will be in the first 3 weeks of checking. 2 weeks to go Peanut! She (opthamologist) said that she's got pupils now...those cells are there, and next her iris will form? And her eyes won't be "mature" until 2 week after she was to be born...so in July.

Other than that...Peanut has been swaddled and sleeping...and yawning!!! (It looks like she's yelling and clapping her hands, but she really was just yawning...)


ps...Madeleine peed on me today during a diaper change...isn't that fascinating?!

The little things

Look at this awesome blanket Madeleine's Gma Forbes made for her...it has a matching hat, jacket and booties! She LOVES it...

Today was all about those little things. Baby steps. These days...I appreciate smaller things. Even big changes that are good can be a drain. Here are all the little changes that happened today that even though they are small baby steps in the right direction...still feel gigantic to me. It seems that my sense of proportion has been off ever since Madeleine arrived in our lives.

First, Peanut and Mr. Nitric Oxide have called it quits! He's still waiting by the bedside in case they need to hook up and "have words"...but their relationship has been called off and they probably won't be getting back together! She's tolerating this quite well since she was on her back this afternoon (her least favorite position) and was on about 43% oxygen. When I got to the NICU, she was on 39%...her lowest ever. Next, she has no more skin temperature probe...the little wire that was held on with those fabulously shiny gold hearts? Her weight and growth was appropriate for her to not have to have that anymore. So far, she's holding her temp well.

Another change...they tried swaddling her, and she LOVED it. She's wrapped up like a Peanut burrito now. She's so relaxed, sleeping like a baby! She's also up to 27 ml of milk and loving every drop. The head ultrasound they did this morning showed no change...her ventricles were still the same size, and the clot from her previous bleed was "evolving"...breaking up slowly and being reabsorbed. They'll watch her head circumference to make sure she doesn't get excess fluid, but so far, it's grown normally. There's talk of weaning her hydrocortisone too...and even the rate on her vent...not the pressure, she doesn't like that...but just the breath rate. They also haven't had to transfuse her lately, so she lost her "unicorn" IV in her forehead!

So that's pretty much it for now! A lot of little things. The 5th/6th grade girls and I made jewelry this morning. We had a good time and only dropped two containers of beads! I'm going back tomorrow for an hour to finish up and get them to draw peanuts for Madeleine's 6 week birthday. Grow, baby grow.

Yeah...

Still high on the babe!

Holding that babe was such a high for me...it took me a while to fall asleep last night. I kept having to tell myself to stop thinking about it, and go to bed! 6:30 came early this morning, but I was still buzzed on Madeleine...still needed that soy chai though! On a sad note, I got a lovely latte this morning and promptly knocked the entire thing off the dining room table onto the hardwood floors...(Sadie got a little). Maybe that's God's way of telling me not to consume too much caffeine!

Peanut is doing very well...she's still doing that crazy bounce from one end of her oxygenation levels to the other...I'm going to ask about that one tomorrow. She was down to 43% on her oxygen when we left the NICU this afternoon...it's the lowest yet. She's at 25 ml of milk every 3 hours, and now Tim has witnessed what I experienced a few days back with the "you know what"...starts with a P and ends with a P, with double O's in the middle! I sorta promised my cousin Alex that I wouldn't post any more of those pictures...! But, she did it again...I'm not sure why she waits for the diaper to be OFF to do that? Oh, freedom...

Tomorrow morning I'm going to do jewelry making with the 5th/6th grade girls at the academy I taught at last year...thank God Madeleine is doing so well and I can feel ok about leaving her for some time to do things like this...if they get done early with jewels, I may move right on to drawing class! A card for Madeleine? I'll teach them to draw PEANUTS!!!

Together AT LAST!

The moment we've been waiting for...the first holding...look at that zonked out babe! She loved it...probably a moment she'll never remember and one we'll never forget.
Kangaroo care was incredible. I just sat in the chair and they unhooked all of her lines, even the vent! She had to breath on her own for about 8 seconds while they got the tubes out of the isolette. They placed her on me and covered her with warm blankets. She did really well with it all...and I got almost an hour to hold her. She was very relaxed and slept most of the time, but she started to wiggle around a little toward the end since her diaper was wet. It was either that or us lifting the blanket to peek at her face and take pictures! Before we got her out...she was bouncing all over sat-wise...hi, low, hi, low...afterwards...she was still going up and down but staying in her range and not making her monitor alarm every 2 minutes.
It was great therapy, just what we all needed. Tomorrow if she's still doing really well, she'll get "Koala care".....daddy time! What an awesome day...Deo gratias!

Spooning

Privacy PLEASE! Can't you see Mr. McBearenstein and I are having some "together time"?!

Mr. McBearenstein...roll over, you're snoring!

Don't you just love her little side wrinkles? She's so out of it during belly time, she doesn't even care what her hair looks like. There's some serious bead-head action going on!

Piggy Peanut

Widdle Biddy Toes! Wanna see them a little closer...ENHANCE!! (props to Cute Overload on that one)

I'm badly in need of a manicure. :)

Peanut has been a giant piggy that past few days. She's now up to 3 lbs. 2 oz! It's unreal. She's up to 21 ml of milk, and will be on full feeds tomorrow I'm guessing. She's completely off of the TPN, which is a blessing for her liver. Her PICC line has been removed since she no longer gets those fluids and if she needs medication, it will go in her feeding tube. She now has both arms and hands completely free to grasp tubes and wave her hands wildly in the air! She's hovering around 53% oxygen, still bouncing up and down with her oxygenation...she'll be 80 one second...then 97 the next.

We will be celebrating a double birthday this Wednesday...Tim will be a quarter century old, and Peanut will be 6 weeks (32 weeks adjusted). A father-daughter birthday bash!

Bedside Art

This monogrammed blog is brought to you by Pretty Peanut, Inc.

Was busy by Madeleine's bedside making little artsy things yesterday. I was a bit "blocked" and I rarely get artist's block...it's more like artist's freeze...like an old typewriter when the keys all go at the same time and get locked together. Since Peanut is my inspiration, working on her initials or drawing a peanut usually gets things moving. After her initials, I went back to bird land.
This is the kind of tree I'd like to paint in her room, a sumi-e inspired Japanese cherry blossom.

It's 10:30 am and I haven't been to see the Peanut yet because I've been cleaning the house all morning. When I called, she'd had a good night, her blood gases had been steady and she was in the 50% range on her oxygen and tolerating feeds well still. Good news like that chills me out and allows me to feel ok about being home doing things, but it only takes a few hours and I'm antsy to leave. I've never wanted to be at a hospital so much in my life! It's a good thing that I've gotten over that whole "throwing up in hospitals" thing I used to do!

*Update 8pm*
Peanut is holding steady and doing well. I spent all day with her giving her "touchies" in her isolette. Her blood gas this afternoon was good, she's up to 19 ml of milk now with fortifier in it. More calories! I changed her diaper and helped to reposition her for tummy time. She woke up right as she was put on her tummy so she squirmed for 10 minutes with her eyes wide open and was desatting. As soon as she snoozed off into dream land...she was sat'n hi once more! Good Peanut.

What goes in...

And now...the moment you've all been waiting for. Fresh from the babe...not her first performance, but definitely one of the BEST!

POOP!

Madeleine says, "There's definitely more room on the outside than there is on the inside!"
So...the nurse and I were changing her diaper together, it's hard to reach the other side of the babe in the isolette so it's good to have a pair of hands on both sides. I unlatched the diaper and saw that she had a few little pieces of poo there...and the nurse goes, "Looks like she's still working on it..." and kinda pushes her legs back on her belly a little bit and that was just enough pressure to help her out with the situation! I really have never seen anything like it...truly. I will spare you the details...you can see the results for yourselves.

You have to admit, it's an interesting shape...no?! :) It was also funny today...Peanut had a very wet diaper and I asked her nurse if she can tell how much they weigh by just feeling them. She bet 26, I bet 27...it ended up being 34 ml. Sheesh. What a PEE-nut!

In other news...today Madeleine was 5 weeks old, that makes her about 30 weeks and a day (or two) old. We had her traditional Wednesday birthday party in the cafeteria. I have to say, I'm finally completely OVER the food there...except the cookies. Punkin is scheduled for an eye exam next week and after hearing how they do it...I will NOT be looking. Fortunately, I've been told it's very quick. I'm curious to see...just what she sees. She's still loving Mr. Servo i and in fact, they removed the oscillator from her bed space. She's at 18 ml of breast milk now and will be at full-feeds in a day or so. That means, bye-bye TPN. They already stopped her lipids and once she's at full-feeds, they will add fortifier to her milk to give it more calories. As soon as they know she can tolerate that...they will remove her PICC line. The less hoses and wires on my child...the sooner I can hold her! Their next problem will be...getting me to let go.

What a day in Peanutville!

Where do I begin? How about with a 2 lb 12.2 oz Peanut Pic?!

Peek-a-boo! See, she's ready to play!
Today was a very good day, but it still wore me out! Peanut is so relaxed and apparently happy on her new vent...but the not-so-good part was that her CO2 kept going up. They took her from 40 up to 50 breaths per minute and at the next check, it wasn't any better. It was in the mid-hi 70's. This earned her yet another new toy...a bigger breathing tube! She'd outgrown the old one. They told me that if a baby her size was admitted today, she would have a larger tube...and that basically the vent wasn't able to fully do it's job because air was escaping around the small tube in her big throat.

It seemed, as I asked questions, that this was a normal thing and that they did it all the time...so I said a prayer and stepped out for a sandwich knowing that Miss Madeleine is a tough little cookie and she always seems to do well with the things that sound the most intense. Being extubated, bagged and intubated...NO PROBLEM...peeing and pooping...CHALLENGING!
(Even though she's still doing those well at this time!) Here's a pic of Maddie's new friend, Mr. Servo i. You can see her other friends back there too...Mr. Nitric Oxide, who got turned down from 5 to 2.2 today and in a week, he will be an old friend that she doesn't hang out with anymore. Even farther back, Mr. Oscillator...hopefully they've played for the last time.

So today Peanut got a new ventilator, new tube and new neobar, white instead of yellow, and it doesn't pull her fat little face together like the old one. He CO2 is down from the 70's to the 50's now...that means it's good. :) You know what made me squeal (inside) with delight?? They said now I'll get to hold her soon! My Peanut!!!

I'll now leave you with the sleeping Peanut, snoozing right after her 13 ml of milk...the Perpetually Precious and Perfect, Pretty Princess of Power is hopefully dreaming of her Posh Purple Peanut Palace (that her mommy needs to PAINT!)...see you tomorrow, Madeleine Rose!

Hello Servo i

I'm so excited right now, it took me literally 6-8 times trying to sign in...first I typed "blogbot"...then realized I was typing a . instead of an @ symbol...then I had the numbers wrong (it's her birthday, duh!)...then forgot to add the middle name...then realized it wasn't "blogbot" or even "blogspot"...but gmail! Typing fast while excited could have gotten me locked out of my account...good thing I'm not this excited when logging into my bank account these days!

Anyway...it's a lot quieter around the NICU today because Miss Madeleine is on a Servo i venitlator and off of the oscillator! They decided this in the last hour or so because I just called on Peanut not too long ago. They said since she was fighting the vent and more awake...it was time to graduate. Now, it assists her, but allows her to breath comfortably over it if she wants without struggling! Can you see my happy dance?! They're going to watch her closely and keep checking her stats...she's at 40 pressure now, and they an go up to 60 if they need to...and if she has issues, she can go back on the oscillator but lets pray she stays on this one. Yay! More info soon.

By the way, Happy Birthday Mr. G!

Hands On

The past few days, I've just happened to look into Peanut's isolette to check her out and have noticed her doing strange things that really weren't "registering" on the monitor. Yesterday, with her flailing episode...and now today I just got the urge to look at her and noticed her "breathing" hard. Her chest was going in and out, and she was slightly gasping for air...and wasn't vibrating from her vent. I called the nurse over and she got a RT and started moving her breathing tube...she finally stopped gasping and started vibrating again, meaning the vent was working...but after that, she started to desat down to 69 and it took her a good 20-30 minutes to come back from this episode.

The hard part for me was...her monitor wasn't alarming, and she's got a cover over her. You can't hear or see her. The gasping for air is a new one for me...she's been doing different stuff the past few days and after today, I'm afraid to go home. Last night she looked good but her blood gas came back not so good...and they did an X-ray and saw that she had grown out of her tube again...so they pushed it in a little and she got better. Now I'm wondering if there's a certain way the tube should be positioned so it doesn't get stuck or twisted, or whatever in the world it did today?! I don't know how the tube *should* be laying, so I don't know when it looks ok. I'm just afraid she'll be struggling for a long time without someone noticing and it will do her harm. Sure, her vent wasn't helping her out much and she was pretty much breathing on her own...but she still wasn't very good at it...she was struggling. That's a lot of breathing to do all by yourself all at once!

She's going to the bathroom quite well still and they've moved her feeds up to 9 ml, and will increase them by 2 ml every 12 hours until they're at full feeds, which I was told today is 26 ml...once she gets there she'll come off of her TPN and her liver will have an easier time since the TPN can be hard on it. And, she was borderline ready for a platelet transfusion, and her platelets actually went up, so that means she's making them. Good. Every time she gets transfused she puffs up like a croissant and has to have a diuretic to pee off all the water weight...

She got flipped on her belly before I left this afternoon, and was being fed...and was instantly very still and comfortable looking, as always with belly time. I felt ok to leave but now I'm antsy here at home, even worse than before! But I have to clean the house sometime...

Peanutville

Remember that Madeleine L'Engle book, "A Wrinkle in Time"? That concept of time 'buckling' and allowing you to step off the line of time from one spot to another...that's been happening a lot to me lately. If I could sit back and say..."What's next?"...this is what I see.
Know what this is? Madeleine's future Peanut Palace! It used to be my bead and sewing room and it's connected to our bedroom via a pocket door (shown in top picture). 2 of the walls are white, and two are deep red...the ceiling has wallpaper on it, at least 3 layers when concidering what the rest of the house has had (some places 5 layers). It's ok, it's so old and crusty, it comes off in a sheet when faced with my wallpaper steamer. Best $50 I've ever spent on the house. The floor is dark, painted around the edges and covered with a sticky layer of residue from the tar paper that was under the linoleum. Basically, it's gross.

Peanut, through her powers of mental telepathy, has told me that she would like a bright, yet rich lavender colored room and she wants her daddy to sand the floors and make them nice and light. She also desires something fun on the ceiling to look at...a blue sky with clouds...wispy ones, not cartoony and boring. A tree on one wall was also a thought...some gauzy curtains with darker ones too for sleeping during the day...and last she was thinking a rug would be nice since her mommy's feet get so cold in the winter...no telepathy there, she heard all about it this winter!

Basically, to avoid that wrinkle in time that I feel so rapidly approaching, I need to get busy.

Wild Girl

Do I look confused? Maybe not since this was just before Madeleine woke up, eyes wide open, breathing over the vent and started kicking her arms and legs around like she was trying to swim. I changed her diaper, it was full of pee and a pile of little yellowish "seed" things that when one of the nurses saw them, asked if she was being fed breast milk. Yes! So that mystery is cleared up.

Ten minutes later, she's STILL flailing and making "cry" faces and eyes wide open...I was a little more than freaked out by this point since I'd never seen her this active, and this WILD. She had yet another diaper change (15 mins. had passed) ...more pee and poo. Lovely! STILL didn't calm her down! Then, her nurse fed her, unswaddled her (she was warm...NOW I know...) flipped her on her belly and she was instantly calm. *sigh*. BUT...now she uses the little roll at the end of her bed to push her bottom way up in the air and stick her tongue all the way out.

I've never been around babies, ever. Especially not one this small...and have never seen the signs or watched the changes they go through. She's been through a lot and I worry about her. I'm the only one that seemed to be concerned today...she just went from "sleep all day" to "WOOHOO!" in half a day's time. The crying faces, the eyes wide open looking around like she's lost, the flailing...she's in that box and I don't really know what to do to help her. She was wilder today than when they sedated her a few days back...that confused me.

After talking to the charge nurse, she explained that the hydrocortisone she's getting could be giving her this burst of energy, or she could just be feeling so much better after peeing off some of that fluid she's been retaining. I'm just not good yet at discerning the signs and stringing them altogether.


She looks so good to me though...she's filling out and her skin is a beautiful, even tone...she's my Pretty Peanut Princess of Power. She's now sleeping soundly with her arm wrapped around her little bear blanket (suddenly, he's ok to touch now...they must have kissed and made up) This sure is a crash course in BABY! I missed Baby 101 and went right to the master's program. God doesn't send us anything we can't handle...right?!

Puffy Peanut

Dark and warm, a good place to grow mushrooms...and Peanuts! Madeleine's Peanut Palace has been covered like this for a few weeks...she likes it dark, the way it's supposed to be in her world right now.

Madeleine has been retaining water the past few days. There's a few reasons why she could be doing this, all too complicated (even though probably fairly simple) for me to explain right now since my brain is a little "dull" this evening. She's not peeing as well as she once was...her body is growing and metabolism changing. They've been weening her vent settings frequently and then had to go back one today...it's like when you give a good pull to the toilet paper and sometimes more comes off the roll than you need and you have roll it back a bit! Kinda like that.

I'm getting a little jealous but being ultimately patient...at any given moment I can turn any direction and see a mom holding her baby all connected to tubes and wires. I have to settle for holding my hands on her head and legs. She doesn't like her back touched, it probably tickles or just doesn't feel great. Her skin is soft like silk and she's warm and smells sweet. Can't wait to get my hands all over that sweet punkin muffin of love!

Raise your hand if...

Raise your hand if...
...you love your mommy and daddy...
...you're fond of pooping at night...
...you love to sleep on your belly...
...you think your nurses are the coolest...
...you want to play with the Servo i...
...you're getting 6 ml of milk now...
...your parents ate Chinese food, fell asleep on the couch and didn't wake up until 1 am...
...you're loved, adored and prayed for...
...you're a pretty girl!

Peanut Princess

Madeleine is doing well so far tonight yet very active...she's been all over the place with her sats...one minute she'll be low...the next minute high. She did just get 3 ml of food and a position change at 11 pm and is now *sorta* settling down. She's a wild girl, moving her arms and feet around...she's ALIVE, and she's strong for being such a petite Peanut.

She also did get a glycerin suppository because she hasn't pooped since her last "poop party" (4 times in one 24 hour span) a few days ago, so we're hoping for some messy diapers tonight. I changed her right before her feeding and it was soaked. They're planning on weaning her delta P vent setting down from 35 to 33 at 2 am. Hopefully she'll tolerate that and keep moving forward, I'm ready to get some snuggling going here!!! It's making this mommy very antsy!

Agitated

Madeleine behaved for her birthday...and then decided it was her party, she'd act up if she wanted to! In the evening, she was "agitated" and they sedated her, which didn't make me very happy at all. "Agitated" to me means irritated or annoyed...so I think...check the diaper, reposition her, suction the tube...but she was knocked out instead. I think it was just not explained to me in a way that I could feel ok with...the doctor that night was not easy to understand. I was afraid to ask a question, let alone a STUPID one for fear that we just weren't able to communicate well.

Long story short, this morning, her nurse explained that when she's "agitated"...it means rather that she could be in pain, have a headache, etc. The sedation helps her with the pain of the high frequency ventilator, and all the things that her body is doing that could cause her pain. She said that the ventilator can pain an adult, and so how much more would it pain lil' Peanut?! That made me feel better about the whole situation. She also said when we're "agitated", it means annoyed and the last thing we want is to be medicated! Exactly how I feel.

She is getting some red blood cells today, her little Peanutiness just can't make them well yet...she got platelets this morning. Her body is still "catching up" from when those platelets had to go assist the bleeds she had, or so I understand. They also said a need for platelets could be a sign of infection, but so far no infection has shown up. I remember little to NOTHING from biology class, I was too busy printing pictures to care...and a lot of it is just over my head and that's why I need it explained to me 10 times...unless someone shows me a picture of what is going on, I'm fairly lost.

There have been two peaks to my day...the first came when I stepped outside and found the most glorious package from Aunt MB...loaded with wonderful scripty notes and sweet gifts...how did she know that I'm allergic to practically everything except Clinique?! Fabulous. And, the second was when some nurses were saying how cute Madeleine was...of course I KNOW that...but it's great to hear other people say it...I just want everyone to adore her as much as I do, ya know?!

Peanut Gallery

Gratuitous Peanut pictures from this afternoon...





When we walked in the NICU tonight there were nurses, doctors and RT's with Madeleine. The Peanut is retaining a little water...they had to change her vent settings a bit and move her breathing tube in a bit. She grew and the vent tube is taped to her...so it was sitting a little high and possibly causing her some oxygenation problems. Feedings have stopped until they make sure she's on track again. They also gave her more hydrocortisone and won't be weening her off of that as quickly since it looks like she still needs it. Now we're wondering what the long term effects of being on that will be? It's a question for tomorrow.

It always seems like Peanut has a little "episode" right before her birthday...and it's less than 3 hours from her 1 month mile stone...I should have expected it! What was I thinking? She's been sailing along, doing great...that's always when it happens! I was going to go out and buy a pan for making madeleine's and whip those up...but it's 1:30 am...we'll see what tomorrow brings.

Update

Since I have no recent pictures of Madeleine, here's one of her patron saints instead!

Daddy and I visited Punkin last night and she was sleeping very soundly, making exercise now and then, but just resting and growing. This morning I called to check on her and the big news is that she pooped 3 TIMES in the night. Holy mackerel.

The funny part is...these 3 poops are now earing her 3 ml of milk...up from her 1 ml! With the increase of food, they'll decrease her TPN (Total Parenteral Nutrition). They've also stopped checking her blood so frequently and only do it once a day now which means less needles in the foot and she gets to keep more of her blood. She's only got so much you know!

Her last head ultrasound looked "unchanged" from previous ones which is good. Her ventricles are the same size meaning they're not swelling as the clot from her original bleed breaks up and gets reabsorbed in her body. Her last chest x-ray also showed her lungs being a little more uniform...even though they're still very premature.

Tomorrow, she'll be 1 month old...we will be celebrating that for sure...even though we celebrate everyday we get with her!

Getting bigger

Height - 13 3/4"
Weight - 2 lbs. 6.7 oz.
Age - will be 1 month on Wednesday, roughly 29 weeks gestational

The Punkin is such a HUGE girl now. At birth, she was 11" long and weighed 1 lb. 11 oz. I'm not sure what her head size was when she was born, but it's 9 1/2" now. She is still tolerating her feeds and they may increase them tomorrow since she has pooped twice now. The system is starting to function. They brought her nitric oxide down from 10 to 5...(she started at 20 ppm) and so far she's doing fine with that. I have to keep reminding myself that even though she's doing great...we've still got that "long road" ahead of us and she IS still in the intensive care unit. Eye exams will start in a few weeks

Peanut is as feisty as ever...she loves to sleep with her arms raised above her head which causes her not to oxygenate well. You can tuck her little hands in and she yanks them out and up over the head they go! I think this is genetic since both her mom and g-marms sleep like that! Silly Punkin. I'm going to have to buy her hard, plastic toys to hug on when she's older since her plastic vent tubes are her best friends right now...she's always "holding hands" with them!

In other news...

(Grandpa Brenner with Madeleine's mom painted like a clown by Madeleine's mom's mom!)

Madeleine's grandpa Brenner would have been 68 today. Happy Birthday G-pa, rest in peace. We're going to celebrate today with homemade stuffed squash made by our friend Miss Shab2 and some slices of cake purchased with "milk money" from the hospital's cafeteria!

Happy Easter

Wishing everyone a glorious Easter.
With love, Tim, Kim and Madeleine.

Let there be....

...POOP POOP POOP! The eagle has landed...and she did it all by herself! And the detailed report is in...it was soft and brown...a regular ol' BM. (Sorry, still no pics...the diaper wasn't saved this time!) She was just about to get a glycerin suppository...when..."PBBTTHTHTT". She must have heard and decided it was time!

The prettiest girl...

Look at the pretty pink bow! Madeleine's feeling very girly right now.

The new Peanut palace is in place, looks just like her original palace but a lot cleaner. This will help the Peanut fight infections that could grow from the high humidity her first week at Mercy, not to mention time and lots of hands and stuff going in and out of her palace. And will you look at the new bedding, the exact colors that her room will be! Violet and green.

She did really well with the switch, I, on the other hand, had to leave the room. It wasn't that it was horrible, I just didn't know what to visually expect and thought it best that I not watch. She's been a stable girl and has even been weened on her oxygen some, she's retaining a little water and they're helping her out with that...it seems that some things start to work well and something else will start to have a little problem, and back and forth. It's a constant tweaking with her. But she looks SO much better than she did 3 weeks ago...I looked back at old pictures and it's just amazing...they're really taking good care of my Peanut...she's so beautiful!

Madeleine's 1 ml of food per 6 hours is going down just fine, it's still not coming out the other end though! I imagine it will be one of those things where...once she starts...there will be no stoppin' it. That's ok, let 'er rip girl!

I still think Tim's ring would work as Madeleine's bracelet. It would be like one of those big, heavy bangles they used to wear in the 80's. Now all she needs is an acid washed onesie and a hot pink diaper and she's so IN. (Maybe some neon green leg warmers...and Cyndi Lauper on her walkman...nah, I don't remember the 80's...)

Making exercise

Peanut has...
her own dishes...

Madeleine has still been resting and has been a very good girl for her nurses lately. She still isn't fond of sleeping on her back...it appears that she's more awake on her back so maybe that's the cause of the desats and flailing arms! We call it "making exercise" after a lady that I used to work for at a gallery in Chicago...she would hard boil eggs and crack one on the counter. The dog would hear that and come running but she would never give the dog the egg until he "made exercise". She would hold the egg over his head and in her thick German accent she would say, "Make exercise!" and the dog would growl and spin around in circles until he earned the egg!

Madeleine is currently earing her 1 ml of milk every 6 hours...not nearly as fattening as a hard boiled egg...but probably tastes better. Her exercises are waving ( or so it seems), reaching all the way back and feel the vent tubes and licking on the ones in her mouth. She also found her mouth with her hand and "nommed" on that for a while. "Nom Nom Nom...tasty hand". She's been a squirmy little Peanut while on her back but loves when we "cup her" at the feet and top of the head...she feels contained...even big daddy did it for her tonight! She loves him.

Punkin gets a whole new bed tomorrow...she's been living in her current Peanut Palace for a little over 3 weeks. She gets a new one and it sounds like quite the manuever...I probably will not want to watch as I will fret and get in the way. I'll just have faith, say some prayers and leave it to the the pros! Maybe I'll distract myself at J.Jill buying an Easter outfit? Peanut would approve. I have to get it while I can...pretty soon there will be a new girl getting all the outfits!!

Poop!

Well, the little Peanut did it...she finally made poop. If I'd only had my camera! The nurse saved the diaper to show us...we were actually very grateful!

Without going into too much detail...it was small, dark, dense...but it was enough to relieve us (and Madeleine a bit...). Her X-rays that they've been taking with the dye have shown that her system is connected, not twisted, malformed or obstructed...and some parts of her small intestine are crossing over the mid-line by her liver, even though most of it is on the other side. We want it to be evenly spread out across her belly but that liver is just taking it's half out of the middle these days!!! But it works, and is formed, and that's a good thing.

She's come down on her oxygen a bit, she's in the 60's and 70's now, down from the 80's and 90's...they're hoping to ween her down even more in the next few days to a week and get her on a conventional ventilator...and you know what that means, Kangaroo Care!!!! Touchies!!!

They're testing her bodily fluids out since her electrolytes are a bit off, and combined with other things (that I can't quite remember right now) they're making sure she's not "stressed". They're giving her hydrocortisone to assist her in that, since her body doesn't make cortisol (which you excrete to assist with stress) the hydrocortisone will supplement it until she can make it herself. We got a lot of information today...and most of it was a big relief since the past few days have been a little rough. I was afraid she was going to have to have surgery on her gut, and her oxygen kept going up...it was just a lot.

Still not out of the woods, but the trees are blooming a little...

Sleeping

Here's where the expression "sleeping like a baby" was coined. That's pretty much what Madeleine has been doing for past few days. It seems good, if she's sleeping her body has time to grow and heal...but I always wonder what the next "thing" will be. You know, it's always "quiet before the storm"?

The Peanut weighs 2 lb.s 3.9 oz now, and while some of that might be the blood and fluids that they've given her, it's visually clear that she's growing. She's filling out and after going back and looking at older pictures of her, she just looks a lot better.

She gets another X-ray on her chest and belly this morning to see if the dye they put in her stomach has moved any farther. So far, they're saying they don't really think it's obstructed, but that her system is indeed slow. Let's just pray that she doesn't get an infection from the food sitting in her system this long...the less antibiotics they have to shoot her with, the better. So far nothing bad has grown for them in their tests...let's continue down that path. Oh how I love my Peanut!

Picky Peanut

I'm starting to think that, in addition to the NICU preemie roller coaster ride, Madeleine's "performance" has a lot to do with her budding personality! Some nurses she behaves for, some she doesn't. Some can change her diaper and mess with her and her stats drop, some can do the same and her stats go up. It's very interesting.

She was behaving very well last night...I think she liked the nurses' shoes...they were black and red, looked like a Mary-Jane style. It's shades of things to come...we like the same shoes...so I'm sure one day I'll find all of MY shoes in HER closet....

They've been doing a lot of X-ray's on the Peanut the past day.
They put inert dye in her feeding tube so they can see where it goes and how quickly. So far, it's leaving her stomach, going through the small intestine...slowly...but all her small intestine is on the right side of her body. Her liver is large still from the bleeding she had 3 weeks ago at the start of life, and it seems to be crowding her intestines. Hopefully that will be something that readjusts over time. At this point, I haven't gotten the full report on the dye and we're still waiting for her to poop. Her system is really slow right now, underdeveloped.

This morning I called her nurse for an update. She said that Madeleine was sleeping and didn't mind getting her vitamin A shot...but did not like having her hands and neck cleaned off! Also, she loves to grip the tubes in her mouth and will hold onto an IV ( or my finger )...but she would NOT touch the teddy bear blanket thing. She rips her hand off of it (she knows it's made in China). The tubes have been there her whole life, the nurse said she "doesn't know they're not supposed to be there"...which is nice to think about because the tubes and wires look awfully irritating, at least they were when I had those all over me 3 weeks ago! Madeleine doesn't seem to care though. She'll probably demand a straw with every drink in the future!

Lastly, today Madeleine is 3 weeks old...and weighs 2 lbs. 3.9 oz (some of that is IV and tubing)

HAPPY BIRTHDAY PEANUT!!!

Twists and turns

Madeleine has been so stable for the past week that I wasn't really ready for the little bump in the road that happened last night. Her system started to become acidotic, I think that's how you spell it...I need a medical dictionary with me at the bedside! They thought it was a "volume" issue, so they gave her blood...that made it worse. They gave her sodium bicarbonate to treat the acid and they said it would create excess CO2 which big people just blow out of their systems by breathing more, but since they're breathing for her...they may need to increase her oxygen.

It all ended up going fine...the sodium helped her, her blood gas test came back a lot better, and so have all the ones that she's gotten since then, and they never had to crank her oxygen up. This was an issue because the increased oxygen would make her "chronic lung disease" worse. This is something that supposedly heals over time, but may leave her with asthma or the like. I think what "got me" was the nurse came to tell us the plan and looked at me and said, "I'm really sorry". That's something you say to a person when there's no hope left or things are horrible. I believe that she meant well and it was more about how it hit me. The doctor she has right now was never very concerned, or at least she was confident that Madeleine would not take a nose dive even though it's a ripple in the progress.

For some reason when people say they are SO SORRY to me...it makes matters worse...I know this isn't the greatest situation in the world (and TO the world) and ideally Madeleine would be born on time and fat and sassy and things would be fantastic! But this is what we've got, and I'm aware of what "could" happen and the worse case scenarios have been handed to me, even before she was born. She had a 50% chance at life itself...and then a 50% chance at being "normal" afterwards.

I've got a lot of hope for this little "willful child" as they call her, and I appreciate all the prayers she's receiving and hope that people keep praying. It's not over yet and we're still trudging through the forest. I just hope that no one ever says how SORRY they are again. People should only say they're sorry when they've done something wrong! It would be better to say nothing at all...

Tomorrow, Madeleine will be 3 weeks old earth time....(at 28 weeks)...please keep praying for her...

Eye see you!

"I see you staring at me...can't you see I'm trying to enjoy belly time?!!!"

Madeleine has been a good girl the past few days, yet willful as always! She would only "behave" when she was on her belly...if situated on her back or side, her oxygen would desat and they'd have to turn it way up. Finally tonight, she began to tolerate being on her back once again. If they don't flip her, she'll get a "toaster head"! Then, she'll have to wear a helmet then it will be ROUND! So we want them to flip the little pancake from side to side.

She's been tolerating her feeds really well now, no adverse reactions and they're going down just fine. Not sure WHERE it's all going...(well I know where it goes...it's just that it's not coming out yet!) She's at 2 ml every 3 hours, and there's talk of putting her up to 3 ml tomorrow...we'll see. Other than that, everything is stable and unchanged...even though I pray for quick progress...level ground is also welcome right now.


Madeleine's hair is turning out to be a very pretty shade of light golden brown...I think it's like her daddy's hair. She's got the best wrinkles too...it's just extra, she'll grow into it!

Update

Today is a good day so far...they were checking our Peanut for infection, and had already started her on antibiotics. Her cultures came back negative for infection after 48 hours so they stopped the antibiotics. Her belly is still "round" yet soft, so they upped her feeds from 1 ml every 3 hours, to 2 ml! Not a lot, but hopefully it will keep stimulating her body to work better and better. Her oxygen goes up and down, but that's "normal". They said she's borderline anemic, so she'll probably get more blood tomorrow. I'm not thrilled about all the blood she's getting, I know she needs it to live, just wish I could give it to her. They put the blood through tons of test, I just don't want her to come away from this with a disease from it.

She was just sleeping like a baby...like a good little Peanut...so I came home to work on the house. I'm cleaning and relocating items OUT of what will be her room...taking piles of beads and art supplies and finding new homes for them. I am happy that I can paint it for her now...before I felt to sick to do anything and even though I'd rather still be pregnant, this is the next best thing. She's being very well cared for and I am starting to feel ok about not sitting there staring at her isolette all day long. While she's sleeping, I need to prepare her Peanut Palace!

Peanut loves Belly Time!

A few days ago, they took Madeleine's tanning bed away and covered her isolette with blankets so it's nice and dark for her. She likes it. Now we can peek at her little face anytime we want without blinding her with light!

We're all still riding the NICU roller coaster, today was mostly ups and steady glides...her oxygen has been weened down 10% or so...which means the nitric oxide is most likely helping her.

She still LOVES to sleep on her belly...she seems to digest her feedings really well in this position. Today they fed her a little, and 3 hours later it was still in there, plus a little more which they said was stomach juices. Yum. They went ahead and fed her again...and when they turned her on her belly, an hour later, all of the food was out of her stomach. That means she gets more food! Even if they have to stop her feeds to let her digest...they're still giving her fats and vitamins through her IV...so she's always eating, just not getting the GOOD STUFF!

She got an ultrasound on her abdomen today, which we haven't gotten the results back from yet. She did NOT like this! The gel and the wand made her upset and she would desat down to 67...which also made her mommy very upset too! I just tried to tell myself it would all be fine, and kept drawing trees. After it was over, was when she got "belly time"...and of course, she was fine.

All the ladies holding and feeding their babies around me make me seriously jealous! I can't wait to get my hands on her...but I think it's going to be a long time...it feels like forever ago that I even had her, and it's only been 16 days ago!

Drawing trees

This is what I do in between staring at my Peanut...draw trees. Otherwise, I think I would go completely crazy!

Today was full of twists and turns on the NICU roller coaster ride...oxygen up and down, x-rays on her belly, cerfactin for her lungs...basically she needs to have a "stool"...and she's still not strong enough, so they give her glycerin...and she goes a little...then her lungs are still growing and they want to ween her off the oscillating ventilator and onto a regular one...but she keeps going up and down...and she likes to sleep on a certain side, but they have to flip her to keep her moving and then she doesn't breath as well on that side...uhg! That was the day...and I think my Peanut is doing better than her mom is right now!

I called the NICU at 2 am to check on Madeleine since they were checking her blood and the nurse just said "Well, we fixed her!" She said whatever they did from the time dad and I left, did her good...whether it was repositioning her, or getting her to poop a little, but her CO2 came down and her...well, I don't really understand all the stuff they check...but mainly she was doing great! I think it was that I got in there and touched the relic of St. Gerard to her foot and back right before we left...I'll be doing that again tomorrow! I'm sure once is all one needs, but it never hurts to ask for more help. Deo Gratias.

Happy Birthday!

Today is Madeleine's 2 week birthday...she's now 1 lb. 12 oz.

Madeleine!

The little peanut is doing really well today...her kidneys keep looking better and they restarted her feeding again tonight. They were giving her 2 ml every 3 hours...now they're giving her 1 ml every 6 hours! The doctor commented that she actually has good coordination for being such a tiny girl. I was concerned about her jerky movements and twitching...but the doctor said that's a good thing...she would be concerned if she WASN'T moving around a lot.

She gets to nap on her belly now, which she seems to really like. It's good for me too because I get to put my hand on her back! It's so perfect. Unfortunately, I'm allergic to the scrub soaps...they're too harsh I guess and I've got rashes and itchies from them. A small price to pay.

Did you know that you can join the "Madeleine" fan club?!
Of course, it's spelled "Madeline" without the E. So now I'm hunting down things spelled the French way...like this book on ebay. MADELEINE.