The big 4-0

Salutations loyal followers,

Friday was a hard day for mom and I.  I was in a bad baby mood and nobody can understand what it is that I want.  We also had a travelling nurse.  Mom told me to note that we have a very good friend that used to be a  travel nurse and that he is competent and delightful.   HOWEVER, travelling nurses in the NICU ruin parents lives.  This place has moms on a very fragile ledge of sanity.  Parents like routines, familiar nurses, consistent care times, etc.  So when a travelling nurse busts up in here, it's like finding hair on your liver and onions. It's barely tolerable to begin with but just seeing a hair in it will induce a gag reflex.  May as well be a plate of dog turds.

Friday the hospital sponsored a Mother's Day brunch and art activity.  Everyone tells mom she needs to do things for herself so she was looking forward to attending after my care time.  The brunch was from 9:00-11, so she figured she had plenty of time.  Silly Mom.  The rundown:

9:00 Mom shows up dutifully on time.  For someone that is chronically late to everything, I sure do make her give up her "I can do one more thing" mantra. Mom notes that my bassinet is propped up all weird and I have 1000 blankets wadded up in developmental positions.  

9:01 Mom searches for a nurse to explain WTF my bassinet situation is all about and if she can move me.

9:15 Mom's blood boils waiting to find out who the hell the nurse is and why she's late.  Mom perfectly executes a diaper change, leg exercises, temperature probe, and wardrobe

switch. TN nurse comes in frazzled introduces herself and asks if mom needs help, to which mom says no.  TN leaves room and closes door.

9:15:01 Shit hits the fan.   I throw a fit. Mom tries different breastfeeding positions but little does she know I am determined to make her feel like a horrible mother this morning.  I begin acting like I've never latched before, crying, screaming, gagging, and setting off alarms.  I am tangled up in chords and the breastfeeding pillow so Mom can't stand up and reach the call for help button.

9:45 Mom wonders where everyone is.  There are alarms going off, and yet nobody is coming.  She starts considering options.

9:50 The best options sounds like screaming for help.

10:00  Mom feels like an idiot for screaming help because obviously nobody can hear her.  She is convinced the whole unit is at the Mother's Day brunch.

10:30 A different, unsuspecting nurse comes in to clear an alarm and asks if Mom is okay. A Pandora's box of tears, snot, defeat, and rage comes out of my mom's face.  I think she was trying to say everything is not okay.
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10:45 Other nurse calms Mom down, takes me from her lap and tells her to go to brunch for the last 15 minutes.

11:30 Mom comes into the room and sees that the doctors have put me back on oxygen, and I have a nasal canula back on.  She said it was mentally devastating to see me back on oxygen when I had been off of it for so long.

The rest of the day was mundane at best. I had a chest x-ray, which turned out okay, and Mom and I both had naps.  When Dad got done bringing home bacon he said he was sad to see the nasal canula back on me too.  Dad said I was supposed to be taking care of Mom and I was sleeping on the job!  Dad convinced Mom to come home for a good nights' rest.

I think with all the hubbub of today, Mom didn't take any photos except for this one of me pointing to her in my bassinet photo.

Mom told me to point to the best looking parent. I had to throw her a bone after her day.

35 Weeks and a battery of tests and awesome sauce news.

Hi there,

Its been a while since I moved out of the isolette; it seems like so long ago that I was impressing doctors and being called the unit's most boring baby.  Since I was exceeding so many expectations, I think people just assumed I'd be walking out of here at 34 weeks.  Like literally walking out of here. However, as my mom has shared with you, I've been having some episodes with desaturating in oxygen.  Mom has been concerned about it because it is new.  She never has had to watch the monitor before, and finds herself doing it all the time now because an alarm goes off if my oxygen is too low.  Sometimes it seems to happen after my tummy is full, but sometimes it happens out of nowhere.  Mom has had a lot of sleepless nights and gets frustrated.  It seems like there has been a new nurse every day, and mom has to get them to stay in my room and witness the oxygen drift before they see it.  Even when my pal Jordan reported it, the residents didn't seem to think it was too concerning, but my mom does. I think it is hard for her because she is like a hawk around me, so she notices if I do something out of the ordinary for me, but for the residents, I'm a normal premie baby.  

But today she got back up.  As the residents were rounding and saying how stable and boring I was, Lindsey had a report and pointed out that I had desaturated 20 times in 24 hours.  Dr. Rao, a super awesome neonatalogist, then ordered a full work up on me. While mom wasn't very happy about me getting poked to draw blood and having to have a catheter (what did she think, they'd give me a tiny thimble for a urine sample), she was really happy that someone was trying to make sure nothing was wrong. Dr. Rao even ordered a heart echo just to be safe.  

This is me getting a heart echo.

Once again, I got my pup soothing me during the echo.  Mom says the probes are cute on the echo because they're so small.  Apparently if something is miniature, it is automatically cute to adults. Lucky me!

The good news is that all of those tests came back okay!  Mom felt a little sheepish but at the same time she was so relieved that someone actually took a look to see if there was anything obviously wrong.  And I have some AMAZING news.  I am no longer diagnosed with a coarctation of the aorta.  This was mostly ruled out a few weeks after birth but they were going to do one final echo before I was discharged to make sure.  This was the echo that proved it!  I don't need a heart surgery anymore!  I can go straight home after my time at the NICU and not to Phoenix Children's Hospital.  Originally I was going to have to go right away, and then it looked a little better so they thought they could wait a few months.  NOW it looks like the prenatal diagnosis was over conservative.  Mom and Dad celebrate with funny dances sometimes and when they found out my heart was okay they did one that would embarrass my future self.  I hope they forget that or become really boring by the time I'm in high school.

I was sooo incredibly pooped after my long morning of test that I completely conked out through my noon, three o'clock, and almost my 6 o'clock care.  I guess I needed the rest, because I didn't desaturate the rest of the day.

I slept like this without a peep for hours.

But then mom finally had to wake me up for 6pm cares.

Day 38: Take that Anne Geddes

Today Mom and Lindsey decided to be more ridiculous than usual.

Apparently weeks ago those two got in a conversation about designer baby clothes and the practicality of baby outfits. Lindsey just so happened to go to a vintage furniture fest this weekend and bought me a super practical outfit consisting of a birds nest and peach tutu- like diaper.   Right away when mom saw it, she thought vintage baby photoshoot.

 So instead of being stressed out about my eating habits, this is what mom focused on today.

Baby of the forest

At first it wasn't so bad...

But then there were position changes.

It just kept going on on and on like the next photo was going to be better than the last.

So I started to cry

But it didn't end, it only got me a wubanub on the set

And then they moved to birdseye- angles

and close ups

Here is a close up of my little big feet.

I guess if it distracted mom from our time in the NICU, it was worth it.  At least they didn't make me do this weird crap...

Day 37: "When are you coming home?"

Our little All Star

Hi all- This is Malala's mom substituting for her today.  She's tuckered out so I thought I'd step in and help her out by covering the blog today.  Plus I figured it'd be good to cover a frequently asked question:

When do you get to come home?

This is a stupendous question, and one I think about every day.  After 37 days of the NICU, I am ready to just start being a family without sharing facilities with 60 other families.  I find myself anxious for the day that it even STARTS to be a possibility.  But I will share what the doctors, nurses, lactation specialists, and speech therapists have shared with me.  Malala holds that clock/timer.  When she can feed on her own, without losing her heart rate or oxygen level, then we can safely go home.  I never realized that something so fundamental (and fun) like eating can be so difficult to learn.  She is a trooper and we are so proud of how far she has come.  But now, our job is to be patient and let her figure it out.  

We have days that are good.  Like tonight she ate 80% of her bottle!  That is a record of 32mL in one sitting, without a brady or desat.  But we also have days that aren't so good, where she is tuckered out and won't latch or feed for more than a few minutes, and after a half an hour of trying we reluctantly let the pump do its job.  There are feeds when she eats and then her heart rate drops, or her breathing becomes laborious and she starts setting off oxygen alarms.  It can certainly cause alarm in parents that are used to their little one being hell on wheels and exceeding expectations in everything she does.  It is frustrating to see sick time float away, and high turnover of babies going home in the adjacent rooms and just feeling helpless about helping her out.  

After all, she beat the odds at 29 weeks with great apgar scores, healthy lungs, no brain bleeds, easy wean from oxygen, great weight gain, and NO HEART SURGERY needed!!!! A little thing like eating can't hold us down right?  Well, it isn't holding us down, but it is holding us in the hospital.  We are so grateful for the support, meals, gifts, errands, favors, emails, words of comfort, and prayers that have come our way, and we appreciate everyone's patience with us getting around to each and every person for thank yous.  

I realize I may have unintentionally offended some that were unaware of this blog, but my intention was to capture what was happening with Malala, so I can remember years from now how tiny she was and what her journey was like.  I didn't realize she'd have so many loyal followers. My mind is just on her, and when people ask, I update.  If they don't I assume they're getting their info from the interwebs.  I apologize to any that have come to this blog late in the game.  I meant no offense!

To make the long story short, our outlook has changed from getting her home fast to getting her home safely and on her own time.  She's a tough little booger! Thanks for reading!

Hangin with Dad

Kangaroo Care Time is still Mom's Favorite.

Day 36: Trouble in paradise

Hi all!

After such an amazing day yesterday, I ran into some hiccups today.  Don't worry, I'm okay and still doing great, I just seem to have some issues with drifting off into Malala Land after my belly gets full.  Over the weekend I had high blood pressures, and my attitude changed from spunky to angry and then lethargic.  Mom said I didn't seem myself and was a bit upset.  My parents have never had to watch the monitors to make sure I'm okay.  I normally don't have a brady or desat, but now I seem to get them after I eat.  Nobody seems too concerned about it yet, but I don't want to get overlooked!  I have to learn to eat to go home, and there won't be monitors there!

Also the sweet tape on my legs seems to have moved the swelling to my calves, and Lisa thought that might be causing my lymph system and body to stress out, so she removed the tape today.  It hurt and I was really mad!  Mom said just wait, that I'd someday volunteer and pay someone lots of money to have my legs waxed.  She's crazy!  Instead of the tape, now I wear tubigrip panty hose, which actually look like super cool tights.

Move over Mo, there's a new fancy legs in town.

In addition to my sweet stockings, I now get a daily lymphatic drainage massage once from Lisa the occupational therapist, and once from my mom.  Talk about royal treatment.  Charlotte Elizabeth Diana who?

Lisa giving me daily TLC

I also had an amazing nurse, Jordan, who made sure the doctors knew how concerned my mommy was about the changes in me.  Mom loves Jordan because she was one of the first nurses that comforted her when I was only days old and Mom felt in the way.  Mom says nurses like Jordan have a special gift.  I regret that I didn't get a picture with Jordan before she left, but I wish her well on her travels.  It makes me happy to think of all the babies and families she will help.  Because of Jordan, my good buddy, Dr. Phillips came by to check me out and assured Mom that he'd keep an eye on me.  

The rest of the day I just lounged in my first sleeping bag until Dad got off work to hold me.

Ready to camp

Daddy's champ.  Outfit courtesy the Shcmalzstoetters

5 Weeks and The Generousity of Friends

Five weeks today!  Mom and Dad started out the celebration by decorating my NICU room.  They put up a hand made bunting that had my first and middle names on it.  All the nurses think it is so cute and people stop by to compliment me on it all the time. Thanks Mary Rachel Armstrong!  We love it

Spruces up my hospital room with happiness! 

I woke up bright eyed and ready to take on the world today! It is my 5 week birthday and today Mommy is going to celebrate with great friends by making babies shower or something like that.  I don't know what that has to do with presents and cake, but she seemed excited about it so I am too.

Hello World!

 Mom was so excited she even got a haircut and wore a dress.  She said it was no big deal but I've seen her go days in the NICU without a shower, so the residents and nurses treated her like she looked like she was going to prom.

Mom told me all about the shower.  She said there were so many amazing women there that she couldn't wait for me to meet.  She said they showered me with clothes, toys, and even a stroller with a carseat.  I need that carseat in order for the hospital to let me go home with my parents.  Mom always gets choked up when she talks about the generosity of her friends and how important it is to her to have such amazingly strong women role models for me.  I'm glad that Mom has good friends and I can't wait to fashion show all of my new outfits!  Mom said the party was really lovely and that there was cake, and cute little smores gifts, and hand made coasters.  She said it looked like it was a lot of work and she was so amazed that her friends Cristina, Amy, Michelle, and Jill pulled if off even after having to reschedule cause I came early.  

Beautiful centerpieces and treats!

Chris calls Mommy Panda and look at that cake!

Did someone say presents?

My new wheels!

 Look at all the strong role models and support I have!!!

Wonderful ladies!

Cary & Linda

Cristina, Sabrina, Debbie, and Diane

Karen, Beth, Jeryl, & Fuerte

Amanda, Lindsey, & Mom

Vicki, Jill, Amy, & Michelle

Katie & Laurel

Lisa, Stacy, Barrie, & Aubree

These ladies heard I can only see in Black and White

Wonderwomen

Marlow & Meridith

A NEW WUBANUB!!!!

#duh

A foreshadowing of more photoshoots

Mom saw a spa robe, Dad saw a boxing warm up

My P's

Mom got a little choked up about my life and humbled by the showing of love.

Cake wreck, McMahon Style

Perfectly preserved.

Mom & the stellar shower committee

So you see Mom and Dad got out and had a good time and all of these friends are so generous! Mom had so much fun, but needed a nap after she got back to the hospital.  I am looking forward to meeting lots of the shower attendees soon and might even have a few visitors this week!

Now that I got all this cool stuff, Mom is going to have to heavily rotate my wardrobe!  We've been trying trying to get through all the clothes that  friends have mailed me so she put me in a cute elephant onesie from Cindy Sevier.  Thanks Cindy!

Keepin it real.  Real effing cute.