A Better Analogy

When Dalley was first born, we were told by multiple people that the NICU journey is like a roller coaster. You will have ups and downs of every proportion. The problem with this analogy, is that I actually like roller coaster. I think the ups and downs of roller coasters are fun.

Not much about the NICU is fun.

I work for a company that deals a great amount with the stock market. I was talking with a co-worker the other day and they were asking about Dalley. I told them that for the most part she's doing okay. That since she was born, we have had our good days and our bad days, but for the most part, we've been seeing improvements. My co-worker replied, "so it's like the stock market!"

Yes. Yes it is. Sometimes the ups are huge gains that propel you forward, and sometimes the downs are huge losses resulting in devastation and set-backs.

When I look at where we started, I can see how far we've come. It's about the only thing that makes the frustrations of where we are today tolerable.

A more appropriate analogy than a roller-coaster... in my opinion. ;) 

For me, it is very easy to get down and frustrated here in the NICU. I can feel complete negativity creep in some days. I question everything. I wonder how we've found ourselves here in the first place. I feel so much anger towards myself that my body's inability to carry a pregnancy put her here. I analyze every piece of my life and wonder what I may have done to cause this. I know that it's not my fault. I KNOW THIS! But it's not her fault either.... I don't know why I feel like somebody has to be at blame. I tell myself over and over that sometimes it's just biology.

I don't reveal these emotions to get a reaction out of people... or to draw out sympathy. This is just the reality I have faced. I struggled with it after we lost the triplets due to preeclampsia. ... once again.... my body. And it's not much different with Dalley... The only difference is Dalley's alive and her sisters are not.

Either way, somedays it feels like we're running toward a finish line, but the trail has been covered in cold tar. .. The race is slow.

I'm not always positive and happy. I try to be, but sometimes I fail. It is very easy to look at other people and the way they handle their trials and compare myself to them. "They are so much more positive than me!", "They have so much more faith than me!".

I also know that nobody can see the inner struggle people have.  So I leave it at that. If the world could see my heart, they would understand. Maybe that's the goal .... try to see the world from a perspective other than my own.

"I told you guys......... I HATE THIS HAT!"

Dalley is progressing, but she's progressing a little slow. I am grateful for the progression.... but it's also frustrating when the going is slow.

Here is where we are. Dalley has chronic lung disease. This is a result of being born at 24 weeks. Her tiny little lungs have been through hell. We required and are still requiring them to do things they never should have had to do at 24 weeks gestation. Her lungs are damaged and will be for quite a while. She will be HIGHLY susceptible to every respiratory disease and bug out there.

She is currently being fed through a feeding tube. She can't learn to eat by mouth until her ventilator settings are lower. The weaning is going very slowly.

She is on a CPAP ventilator. Her setting is that of an 8. It took us about 2 weeks to go from 9 to 8. She has to get down to a 5 before she is off CPAP and on High-flow. Once she's on high-flow rate of about 2, then she can try to eat by mouth.

I'm told that teaching them to eat by mouth is a frustration in and of itself. Babies born really early tend to have "oral aversion". Up to this point, everything in her mouth has been such a negative experience, that when it comes time to eat, she may want nothing to do with it. I am trying to help with this by giving her a pacifier whenever she will take it, and when I am there I swab her mouth with a cotton swab that has breast milk on it. She seems to love both of these stimulations, so I'm hoping that will help with eating when we get to that point.

"This hat is much better."

But in all the trying and never-ending days in the NICU...... we have many reasons to smile and be grateful. ......

Dalley is growing. She's now 5 lbs 4 oz. She's starting to fit into the preemie outfits. Some dear friends and family have donated some preemie outfits to the hospital and I've seen her get to wear a few of them. It does this mama's heart good to put an outfit on her.

 She's starting to grin more and more. She's past the time-frame where necrotizing entercolitis is a huge risk. I've worried over this for months... and while I know it's still a "possibility" for her to get it, it's unlikely she will at this point.

I've also met some incredible people... and I will come out of this experience a changed human being. Better equipped to help a friend in need. More willing to look past myself to see the needs of others.

I dream of the day when we will be able to leave the hospital as a family. Make that highly anticipated drive home with her in the car. Sitting with her in the back seat while lovingly reminding Adam to "slow down" and "be careful" and "QUIT DRIVING LIKE A BAT OUT OF HELL!"...... I'm sure Adam CAN'T WAIT for this too........

Until that day comes, I hang on to these moments with everything that I have.

Much love from Adam, Lacey and our little warrior.