Dalley's Week Through Dalley's Eyes

Hey there! Me again.

I don't know about you guys on the outside.... but I have been very busy here on the inside. I have got A LOT to fill you in on.

First of all.... I got to celebrate my first St. Patricks Day! For some reason I still kept getting pinched....even though I was wearing my green bow. Nobody follows the St. Patty's day rules around here.

I also had another eye exam this week to see if my ROP is progressing. Every Wednesday I get these eye exams. I HATE THEM! But... I'm glad they check. If it gets too bad they can try to do things to prevent it from getting too serious. I am still at stage 1. There are 4 stages... so I'm celebrating that I'm still in stage 1. Wooh!

They also did an echocardiogram on my heart. I STILL have my pda.... and now they have discovered that I have the beginning signs of pulmonary hypertension. I honestly don't know what that means.. other than the right side of my heart is working harder than it should. The pulmonary hypertension isn't toooo bad right now so they are just going to "watch" it. ... whatever that means.

The really big news of the week is....... I TURNED 3 MONTHS OLD!!!!!

I got a new hat for my birthday. Everyone loved it on me..... except me! I HATED IT! It kept falling in my eyes...

More good news of the week...... guess how much I weigh now????? I'll give you a hint......

Still stumped???

I weigh 5 pounds!!!! Mom and Dad say that I am looking like a real baby now. NEWS FLASH MOM AND DAD.....!!! I've always been a real baby..... just a really tiny one with purple skin. The doctors actually said today that I am getting too chunky so they are going to reduce the volume of milk that I get. I don't think they can make up their minds... First I'm not gaining enough weight... and now I'm gaining too much weight. The reality is, they are reducing the volume of fluids I get in hopes that it will help my lungs.

The tube you see coming out of my mouth is my feeding tube. Someday... hopefully soon.... I'll be able to try to eat by mouth. As it goes.. I get my milk through a really long straw. I love milk! Buuuut....I think my milk might be 50% Diet Coke. Mom might need an intervention....

My dad had his birthday last Sunday. Guess what I gave him for his birthday?.....

YOU GUESSED IT!!!

I actually gave him his present the day after his birthday. It was hilarious.... as usual. 

And.....I am really starting to perfect my aim. I nailed the spotlight! 

This week has been extra awesome because Dad has been here every day! He has held me every day too. I LOVE snuggling with Dad!

Dad also got to help Mom give me a bath. I love baths. 

I was also evicted from my warmer crib......

And placed back into a jail cell........... I mean a crib. 

This really weird yellow and black thing with wings showed up in my crib and just sits and stares at me. It really freaked me out at first. I challenged it to a staring contest, but it won. That thing is AWESOME at staring contests. 

This place is still boring so I find things to do to pass the time. As you can tell, I'm still working out. Check out these gains!

I've also been working on mastering my "Jedi Mind Tricks"!

I've been secretly practicing on my Dad. I'm trying to convince him to buy me a certain four legged animals when I get out..... Look at him.... He has no idea what hit him! Ha! 

With my 3 month birthday comes the traditional monthly picture with my elephant. Here's a comparison.

5 Days Old

1 Month Old

2 Months Old

3 Months Old

Clearly I was in a bad mood for the picture... but hey... it was my party and I'll cry if I want to.... cry if I want to.... cry if I want to.... 

I think I'll write a song about it someday. 

A lot of people are thinking that when I get to a certain weight I'll get "released". That's not the way it works for us 24 weekers. We don't usually get out early on account of "good behavior". We're rebels at heart. 

My primary nurse Jeanette drew out a diagram to show the steps to my release. 

1. NIPPV to Nasal Canula (we're still in this phase). I'm not longer on NIPPV but I'm on CPAP. 

2. Positive oral stimulation. Show cues to feed

3. Work on eating by mouth... either nursing or from a bottle.

4. No A's and B's for 7 days. (This is when my heart rate drops really low and I forget to breath for a second or two).

5. Eat 100% by mouth

6. HOME!

I've got some work to do, but I'm pushing my little body as much as I can each day. 

I can't wait to get out of here to meet all of my family and friends. 

Thanks for the love, support and prayers.

Love, Dalley Raye

AKA..... World's greatest Chris Farley impersonator. 

Photo and caption credit: My Aunt Rachelle

4 pounds, the Lunch Lady and Hope

When I meet other parents here that have babies in the NICU, there is a conversation that is exchanged. It feels like how I would imagine a conversation taking place if I were to find myself in jail. "What are you in for?".... "How bad was it?"......."How long are you in for?"...... "How early were you?"

I have these conversations on a daily basis. I see babies and their parents come in after us.... and then go home before us. I have found myself envy parents whose babies made it farther than 24 weeks.... or whose babies didn't contract infections...... or who weighed more at delivery. Even though... I know that the NICU is still a VERY DIFFICULT experience for all of us. The NICU is a world all its own. In this world, I think we look for people who we can relate to... or whose experiences are similar to our own.

This is my friend Hollie. Hollie is Meela's mom. We have become really good friends in the NICU. I think we connected so well because we both know what it feels like to lose a baby (baby Meela was a twin and her brother is now a sweet little angel).... and we both know what it feels like to have one of the sickest babies in the NICU. Our babies have both been so sick that there didn't seem to be a lot of hope from the NICU staff that they would survive. Our conversations range from laughing uncontrollably to heavy conversations that are centered around loss and potential loss.

But there has been a shift in the air for me. There has been a shift in my heart.  I think the days shift for most people at some point. Somewhere in the past month, the good days have become more the norm.... and the bad days have become fewer and less catastrophic.

Conversations have shifted as well. The answer to my question of the likelihood of her survival has changed from "We are going to do everything we can" to "I can't guarantee anything, but I would be surprised if she doesn't make it at this point."

They were words that these sleep deprived and worried parents have been waiting for.

So..... I got brave. I went to the store with my sister-in-law Emilee (this required some moral support for some reason)... and I bought my first baby items. A bathtub and a grooming kit!!!!

I know.... I know.....The bravery is just exuding from me.... (Insert eye roll).

Dalley now weighs over 4 pounds. 4 lbs and 8 ounces as of March 18.

And today we get to celebrate this guy's birthday....

This gentle man. He is a perfectionist by nature. He's organized and tidy. He's quirky. He's hard on himself. He has a huge heart. He loves his family. He earned the nickname of "the lunch lady" because he cooked most meals and packed my lunches for work. He works hard... survives on little sleep.... and still manages to buoy me up when I need it. His faith is stronger than mine, but he doesn't put pressure on me to be somewhere that I'm not. I love this guy.

And he is already such a great dad.

First daddy daughter dance

As excited as I am to be a mother..... I am so excited to watch him be a father.

"I think we were both dreaming of ponies." -Dalley

So there it is..... Dalley hit 4 pounds..... the "lunch lady" hit another birthday..... and we all have hit a new level of hope.

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!"