Dalley's Eyes

Hi friends. It's me....Dalley.

I've been pretty busy this week so I thought I'd give you all a quick update.

I know that a week ago, everyone thought that I was getting sick again. Turns out.... I wasn't sick... I was just TIRED. I had only been extubated for a week and it was A LOT of work to try to breath without that stupid tube down my throat. On top of that..... they put me in a crib and I got too cold. It's also A LOT of work to try to warm myself up.

They decided that trying to have me breath on my own....AND maintain my own temperature might be too much for my little body. So they gave me a nice warm bed back. The only downside to this is... I don't get to wear my cute hat as much. Darn.

Because I was born soooooo early, they have to check my eyes once a week to see if I have or if I am getting a disease call Retinopathy of Prematurity..... or ROP. This is a disease that is caused by excess amount of oxygen (which I sort of need to live). Too much oxygen can cause the blood vessels in the eyes to grow abnormally. The past few weeks I haven't had signs of ROP.... but, this week they saw the beginning stages of ROP.

NOOOOOOOOOOOOOOOOOOOOOOOO!

Now they have to keep doing those eye exams once a week to make sure it doesn't get worse. I hate those stupid eye exams. They hurt my eyes and I cry a lot. Plus.... it gives me a headache.

Also, on Thursday a really nice lady named Jessica offered to come and take me and mom's pictures. Mom doesn't do her hair very often these days so this was a special occasion. Dad couldn't come because he has school. I am excited to get the pictures! In the meantime,  here's a selfie of me and mom.

All in all, it's been a pretty good week. Mom and I get to snuggle every day now! My nurse Jeanette took this picture of me and mom when we were snuggling......

Mom kept snoring and waking me up!!!! But... don't worry..... I'm planning my revenge for as soon as I get home! 

REVENGE WILL BE MINE!

I also got another primary nurse named Amy. One day I thought I would "officially" welcome her to being my nurse.......so when she was changing my diaper.... juuuust when she had the old diaper taken away and juuuuust before she put the new diaper on, I pooped! It had such force behind it, that it went ALL over my bed and the wall!!

BULLSEYE!

IT WAS HILARIOUS! 

The doctors have been trying to slowly take away my pain medications. Apparently it's "frowned upon" to have a baby leave the NICU being addicted to morphine. 

It's starting to get boring in here so I have picked up a few new hobbies. 

I've been working on my crying, cooing and singing voice. My vocal cords are still in rough shape from that stupid intubation tube. I work on this at least once a day... some times more. I'll be singing in no time.

I have also been working out. Pumping iron... or in my case, "pumping air". 

I feel like it's really starting to pay off. I now weight 3 lbs 13 oz! And....check out my muscles!

Well... that about wraps up my week. I can't wait for next weekend.... my dad is coming to see me for an entire week! Plus it's his birthday on Sunday the 19th. I'm going to plan a surprise for him! Probably something similar to what I gave my nurse Amy.

Thanks to everyone that cares about me and my family. Thanks for all of the prayers. I've had a pretty rough start into the world, but I can't wait to get out into the world. With people like all of you out there.. it's going to be a great place to be. 

Good night everyone. 

Love Dalley

Keeping It Together

"Going all natural."

This week has felt like a week of just "keeping it together". It's felt like that for all three of us. I feel like we're all trying to balance on a seesaw. I'm not sure which direction we're going to land. Forward or backward?

"I have an idea...How about you guys stop poking me with needles." 

Dalley was extubated last Saturday. She has spent the week still being extubated, but they have had to go up on her support (peep and pip) quite a bit. A few times they have thrown out the words of "potential re-intubation". It hasn't come to that yet, but I know it's always a possibility.  

On Wednesday she started to show her classic signs of being sick. High heart rate, high hero score, and higher requirement in ventilation settings. She was also really upset every time we got in to change her diaper or bug her at all. Her hoarse little cry is enough to send me over the edge. She just seemed inconsolable. 

I felt absolutely sick when I left the hospital on Wednesday night. When I called throughout the night and the next morning, our night nurse Amy said that Dalley just didn't seem like herself. It felt like more more evidence in the case that she was getting sick again. I was up at the hospital by 7 AM on Thursday morning. 

Blood was drawn. Labs were completed. No infection. They repeated labs the next day on Friday. The blood work results were actually better than they had been on Thursday, so right now they are not thinking infection. She's just having to work a lot harder to breath right now so it's causing her elevated heart rate... at least, that's the theory. 

Most days it feels like we are running in circles and doing just enough to survive. Thriving is different than surviving. We are surviving right now. 

Friday came around and it felt like the family time we've all been needing. We stayed with her until 11:00 PM. Adam got to hold her for several hours. This little peanut LOVES her daddy. He drew so many smiles from her in the few hours that he was there on Friday night.

Despite the week of "back and forth"..... we have had a few positive moves in the right direction.

Dalley was moved to an open crib. No more isollette.

"They call this a crib? It feels more like a jail cell."

We also gave her another bath. She loved her bath. ........

"This warm water reminds of a place I used to live." 

"This is Lisa, my nurse. Mom calls her the infection Ninja. If I have an infection, she will find it." 

Until we took her out to scrub her head......

"It's freezing out here!" 

I know that I'm her mom and I love her like only a mother can.... but most days I don't FEEL like her mom. I don't think it's something anyone will understand unless they've been in this situation. It's not a natural thing for a mom to leave her baby every night with someone else to take care of. It's not natural to look at your baby through a glass container like she's a hamster in a cage. It's not natural to have other people come pick her up to place her in your arms just so you can hold her. So despite the emotionally hard week, for the first few times I was able to feel more like a mom. I can pick her up in her crib and I got to give her another bath. These are moments that seemed like an eternity away just 2 months ago.

"Big girl scale! I now weigh 3 lbs 8 oz!"

All in all, we survived another week. This week she turned 10 weeks, which would be 34 weeks gestation. I've been told on numerous occasions that most 24 weekers go home around 44 weeks gestation... or longer. Even if that is the case. If we don't go home until she's 44 weeks.... then this week would be our half way point. That feels pretty significant to me.

"PREEMIE POWER!"

Progress through Dalley's eyes

Hi. I'm Dalley. Many people wonder how to say my name. Correct pronunciation is like valley, but with a "D". Mom says she came up with my name at a rodeo. It's a roping term... I find this funny because mom doesn't rope. Dad sometimes rope. But not a lot.

Apparently I've had a good week. At least, that's what my mom and dad have said. For some reason mom keeps crying. But it's not a sad cry like it was before. It's a happy cry. Dad has even cried a few times.

Here is how my week has gone.

First of all. I had my 2 month birthday! Woo Hoo! My two month birthday was CRAPPY! They thought I was sick again so I spent my birthday getting stuck with more needles and getting more medicine. Mom said she will make up for it when I have my real 1st birthday. I'm hoping that's when I get my pony..... Mom says not yet, buuuuut I bet Dad will say yes.

Since my 2 month birthday they decided that I wasn't sick. This was cause for celebration! My nurse Jane and I had a dance party. She likes to play the song "Somewhere Over the Rainbow." I've got some sweet dance moves.

These are my jazz hands.

This is me doing the sprinkler. (Mom was really good at this move when she was a kid.)

Things got pretty crazy at my party! Raise the roof!

This is my best friend Meela. She's in the NICU too. She was invited to my party. She was actually smaller than I was when she was born. Only 15 oz! Sometimes we call each other and coordinate outfits.

This is Meela in her green bandana.

This is me in my pink bandana.

Since my birthday, I've been feeling much better.

Mom got to give me a bath. I DID NOT LIKE IT...... at first. But after a while I decided the warm water was quite relaxing.

It was sooooo relaxing that I decided to poop in my clean bath water. My nurse Lisa had to get a whole new pan of water. It was hilarious!!!

After my bath I got to snuggle with mom. The only way I have snuggled with mom before was laying on her skin. Truth be told.... sometimes I get tooooo hot. This time I got to snuggle in her arms. She kept staring at me while I was trying to sleep. What. A. Weirdo.

On Friday night Dad got to come see me! I love when Dad comes!

This time he even changed my diaper. 

Yesterday was a really big day. And I mean..... A REALLY BIG DAY!

Notice anything different about me?

Anything at all?????

I GOT EXTUBATED!!!!!!

At first I was really mad. I was crying A LOT! But dad held me and talked to me until I calmed down. This is when Dad started to cry. He made mom wipe his eyes. 

So far I've been doing really good not being extubated. I got to snuggle with Mom and Dad yesterday. Best. Day. Ever!

We even took our first family selfie.

That's been my week in a nut shell. Sometimes it's still really hard in here. The hospital won't let me wear any cute clothes. Some rule about making all clothing go through their own washing regime to keep me healthy. Some friends gave me a REALLY CUTE outfit... and I can't even wear it. Mom even offered to sort through all of the clothes... and they wouldn't budge. Most preemie clothes are too big for me anyway and the nurses tell me that by the time I go home, I won't even be wearing preemie clothes.  

A really nice lady also sent me my first international gift! An octopus for preemies.... And I can't even play with it yet! Mom tried and tried to let them allow me to keep it in my bed with me, but they kept saying the words "bacteria" and "infection" and "sterile"....blah blah blah. So I can't wait to play with it when I get home! I think it will be nice because I might miss all of my cords anyway. 

I'm growing and getting stronger and stronger every day. 

Here is a picture of me with my elephant when I'm 5 days old. 

Here is a picture of me with my elephant when I was a month old.

And here is a picture of me with my elephant on my 2 month birthday.

I know I have along way to go. But I'm up for the challenge.

3 LBS..... 2 Months.....1 More Infection?

Who now weighs 3 pounds?! 

"I do!!!

"This is how I feel about turning 3 pounds! 'V' is for Victory!" -Dalley

Who turned 2 months old?!

"Me!"

".....and this is how I feel about my 2 month birthday!.... and Dad, did I mention I would like a pony?!" -Dalley

Who may have another infection......?!

"This girl!" 

"And this is how I feel about having another infection. Crap." -Dalley

We MAY have another infection on our hands.... maybe. 

Dalley has a very compromised immune system. Being a micro-preemie will do that to you. But she's also awesome in the fact that she has some very obvious signs when she doesn't feel well.

Her first 3 signs are needing increased support on her ventilator, elevated heart rate, and a high 'hero' score. A hero score is a number that a computer calculates on the hour that is supposed to be a good predictor for a baby's overall health. The scores range from 0 to 7. 0 would be awesome. 7 is the worst. There is a board that shows all of the hero scores in the room. USUALLY we are the highest one. Dalley has a best friend, Meela (perhaps a forced friendship by their mothers at this point). Dalley and Meela like to compete with the highest hero score for 1st place.... (AKA...worst place). Dalley usually wins because she's sick A LOT! 

Two days ago her hero score started to rise. It was in the mid 5's. Her heart rate was also starting to rise. And her respiratory needs  increased. The all-telling trifecta. The perfect storm. 

Yesterday they checked her blood and.... once again, the marker for inflammation was elevated. Not as elevated as it was for her previous infection, but still elevated enough to cause a concern. Once again, Dalley was started on an IV of antibiotics. Once agin, a septic work-up was sent to the lab. 

Our nurses completing what feels like our 112,987.99th septic work-up. 

This infection could really be one of three things. 1 - A completely new infection. 2 - The same infection from last time that didn't fully go away and is starting to brew again. 3 - A inflammatory reaction to the immunizations she was just given on Saturday. 

The plan of attack at this point, is to wait for the 48 cultures to grow. If nothing grows at the end of the 48 hours (which is tomorrow morning), then her antibiotics will be discontinued and they will watch her VERY closely for her obvious signs. They will also run another lab a few days after to check for the inflammation marker. If she doesn't show anymore signs of being sick then they will know it was just the immunizations. If she still shows signs of being sick, then they will have to figure out other ways to figure out what is always making this poor girl sick. 

I got to the hospital yesterday and was informed of this 'potential' new infection. I was so mad and so frustrated. I cried tears of frustration and I cried tears of agony for my poor baby. I was throwing a pretty impressive 'pity-party' for myself. 

And then I got on the internet. I saw of a tragedy that struck a small town in Idaho that will result in a mother having to bury 3 of her children at the same time. I saw a story of a 14 year old girl in Logan, Utah that was shot and left to die, and is now fighting for her life. 

Those mothers were having a much worse day than I was. My heart aches for them. And my perspective changed for my little girl. I became so grateful for the fighting chance that Dalley still has. Not everyone has that chance to fight for life...  Right now we do. We can fight another infection. 

I remember the day when I was released from the hospital over a year ago. I had gone into the hospital pregnant with three perfect little girls. I came out of the hospital without them. We drove home and passed by the funeral home that held their tiny and perfect little bodies. I would have given anything for those three little girls to have a fighting chance. Dalley now has a fighting chance. As frustrating as 'the fight' might seem at times, I am so grateful for the chance to see her fight. I am sad to say it took these tragedies to remind me of that.... and to change my perspective.

Perspective is an interesting thing.

If you are still praying and meditating on our behalf... I thank you. ....And I don't think Dalley would mind sharing in your prayers and thoughts were you to include these families in them.

"Love will always win...... and I love you all." -Dalley