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

60 Days Old

"I turned 60 days old! High Five!" - Dalley

OR

"MOM! Stop with the photos!" - Dalley

(I couldn't decide between captions. :) ) 

Last Tuesday Dalley hit her 8 week mark, or 32 week gestational age. It's weird to keep hitting all of these mile stones that I was unsure we'd make it to a month ago. Weird... and Amazing.

With the milestone of 8 weeks for Dalley, came the day that I had to return to work. Because I haven't been with my company for a year, I did not qualify for any sort of leave besides an 8 week leave. With as difficult as that realization has been, my place of employment has been really amazing to work with me. They have arranged for me to work out of our Salt Lake office for about 5 hours every morning. I am still only 15 minutes away from the hospital and I'm able to get up there ever afternoon around 2 pm.

"I am sooo sick of this tape on my face." - Dalley

Dalley has been clear of her infection since Tuesday. Her 4th (and hopefully final) PICC line was removed and she stopped all antibiotics. Right now they are trying to wean her on her sedation medication (Morphine and Ativan) because they are thinking she will be ready for extubation within the week. Her last chest x-ray showed a vast improvement with her lungs.

This week she also started wearing clothes! Our nurse, Lisa, told me that she was going to see if they had any that would fit her. I said, "Find her a cute one!"... to which she replied, "right now there is only one clean one that will fit her!" ..... and that one still drowns on her, but it was so amazing to see her in clothes. Another one of those milestones that I wasn't sure we'd hit. Another milestone that makes her look more like a baby,  rather than the sick preemie she is.

"Hey Mom.... 1990 called and they want this outfit back." - Dalley

Scandalous "off-the-shoulder" look

I've also got to hold her quite a bit more. As long as she is stable with her oxygen saturations and having a good day, then I get to hold her anywhere from an hour to 3 hours. I LOVE getting to hold her but it's also difficult because I am always afraid that if I move, I will pull on her trachea tube and in my mind that causes a major catastrophe so I cramp up quite quickly. Someday I'll be able to snuggle this little one without tubes and cords. Someday I'll be able to pick her up out of the crib and hold her on my own. As it is now, it still takes a team to get her positioned.

I also am not sure.... but sometimes I think I can see a small dimple on her left cheek. This could also just be wishful thinking. I always wanted dimples when I was a kid.... I wanted them so badly that a few times I tried to "make them" myself with the blunt end of a sewing needle. But... with or without the dimple.... this little chunked out baby is the cutest thing I've ever seen.

As of last night she weighed 2 lb 15 oz! We are 1 oz away from having a "chunky" 3 pound baby. But also, as of last night, her belly is FULL of air again. I sincerely think it's from the milk fortification. I think they agreed with me, because last night they went back to just plain breast milk to see if it helps with her distended belly. I'm trying my best to help her gain weight by eating as many cupcakes as I possibly can..... I'm such an awesome mom. Always willing to take one for the team.

Yesterday she got her 2 month old immunizations. She tolerated it quite well. I think the poor girl is getting used to all of the needle sticks. It seems like old news to her lately.

These little babies in the NICU are seriously amazing. Every day I am blown away by their strength. We've made some amazing friends in here. I've become so emotionally invested in other people's baby's that I cry when they have bad days and cheer when they have little victories as well. Some how... I think these little babies are fighters and maybe they help each other through as well.

"Dear God. Please help me and my friends get big and strong. Oh.... and PLEASE help dad to buy me a pony. Amen." -Dalley

My World

"All the great ones start out sucking their thumbs." -Rachelle Gilbert (Dalley's aunt and former thumb sucker)

We have honestly had the best weekend with little Dalley. The past 3 weekends, Adam has only been able to come up on Friday night and then he leaves on Saturday morning. School has been very demanding this semester and he has needed the weekends to study. But this weekend was different. He had to meet his class in Salt Lake at the capital building early this morning, so he just stayed here the whole weekend. It was awesome.

Dalley has been acting more herself since she has been on the antibiotics. She's been more alert and active. Because Adam was here for the whole weekend, he was able to hold her for the second time. The first time he held her was very stressful. She was only 2 weeks old and only 1 pound. When he held her they were switching out her isolette (which they do every 2 weeks) and he held her as they moved all of the hoses and cords to the new isolette. However, when each cord or hose would come unplugged, an alarm would sound and the numbers on the monitor indicating if her heart was beating and how well she was saturating turned to zero. It was horrible. We didn't know if she was breathing or not.

This time holding her was much more enjoyable for Adam. It was enjoyable to Dalley as well. This made it also enjoyable for me. I love holding my baby. I could do it all day long... but this.... This right here, is what makes my heart want to leap out of my chest.

"I want to hold your hand."

"Hey Dad, can I have a pony?" - Dalley

This little wonder is now 2 lbs 10 oz. Our nurse today was Lisa. Lisa is one of our primary nurses. Lisa is AMAZING! She never tells me things I "want" to hear. She tells things to me straight. I hate it. And I love it. Mostly I love it. If there is anything that is bothering her about Dalley, she will tell me and then get to work to figure out what is going on. She has earned the nickname of "Infection Ninja" from me. If Dalley has an infection, Lisa will find it. (Even if nobody else believes us..... ahem, ahem, cough, cough).

When I asked her today how things were going and how Dalley looked, her reply was, "She looks really good! She is looking like a baby and not so much like a preemie."

Those words. Those glorious words. "She's looking like a baby and not so much like a preemie"!

The doctors and nurses have told us that MOST premature babies get out of the NICU around their due date.... except really early preemies. They tend to get out later. They told us that we can probably plan on being here 1 to 2 months past our due date. Our due date was April 11, which may put us here in the NICU into May or June.

That seems like such a long time, but I will stay in here for years if that means she gets to come home with us.

These two people are my world. My soul is starting to heal. I can feel it. I will never forget the loss I have felt and the people who are no longer here that still should be. But this tiny human and this amazing man are filling so many holes in my broken heart.