Right Side Up

Natalie Rose is a rockstar.

We are exactly a week out from a surgery that would put adults out for weeks and she is doing great.

They extubated her and put her back on CPAP on Thursday. They wanted to do this as soon as possible for multiple reasons, but she was starting to breath enough that they were over-venting her and she sort of decided for all of us that it was time to come off the ventilator. Since then her numbers have been so stable, she is like a completely different baby from a couple of weeks ago. Apparently, there are specific symptoms that a baby will normally show when they have NEC, but Natalie was not showing any of these, so they had no idea anything was seriously wrong until she got extremely sick.

They had said they would probably start introducing trace amounts of milk back into her system on Monday, but they actually started this past Friday. So far she is accepting them, but it is such little amounts, that does mean too much. For reference, before she got sick she was gettings 25 mls every three hours. On Friday, they started giving her 1.5 mls every three hours just to reorient her body to it.

This is really our next big hurdle and hopefully the biggest one we will face from here on out. As I mentioned before, they are concerned with how little of her intestines will store the milk before it exits her body. There are not many scientific/medical ways for them to monitor this other than a very simple observation. When she starts getting milk in larger quantities, they will constantly check her output (which they are already doing). If she starts to "dump" her milk then they will have no choice of waiting until she is the ideal weight to do the reconnecting surgery. Dumping would be if her milk comes back out intact, not broken down, which means she is not absorbing the nutrients. They said sometimes, even though the intestines before the break is very small, it is just enough for the baby to get what she needs, but they have no way of knowing other than observation. We are, of course, hoping for this to be the case so they can wait until she weighs 4.5 lbs which is where they surgeon prefers.

The PDA in her heart still needs to be addressed, but as it has not been causing issues, they are leaving it alone. With how well she is breathing and heart rate staying so stable, they do not think it is a problem right now. They very much follow the medical creed of "Do No Harm" here and feel doing the surgery at this moment could cause more problems than it solves. Right now, they are continuing to monitor it and hope it somehow starts to close on its own (which is technically possible), but we will have to wait and see.

In my stress haze that I have been living under for the past couple of weeks (well really since January 20th, but these past days take the cake), I was completely remembering certain details wrong. When she was first born, it was not her pick line (which is actually spelled PICC) that had to be out for me to hold her, but her umbilical line. They happened to come out around the same time, so I remembered it that way.

Which means, on Friday, to my very great surprise, I was able to hold her. They needed her off the breathing tube and then she was all mine. I held her normally, not kangaroo, but it was absolutely amazing. The nurses and doctors keep talking about the resiliency of these little babies, and it is absolutely miraculous to witness. They heal so quickly and fight so hard, and it is truly phenomenal. Holding her was a gift, that only a week ago, I was not sure I would ever receive again. Between the fear of the outcome of her sickness and surgery, and then the fact that I convinced myself that I would not be able to hold her for weeks, this was a huge moment for me. When I told them I thought I wouldn't be able to hold her for awhile (which at that point it had been over a week) they responded with: "well that would do no good for you or her". They wanted to get her back in my arms as soon as safe for both her and my own well-being.

Yesterday (Saturday), I was able to do Kangaroo Care and we spent 3 hours all snuggled up together. She happily curled up and promptly went to sleep for almost the entire time and did not have one moment where her numbers dropped. She seemed gigantic compared to last week and feeling her warmth against me was magical. Jimmy joined in and passed out on the couch next to us. After over a week of stress and fear, having my little family sleeping and curled up beside me brought an enormous feeling of contentment.

As for Jimmy and myself? We are dealing. To say we are ok would be a lie, of course we aren't. Anyone who knows me will tell you I am an ace for details, and I have found I am having a hard time remembering the simplest things. Simple tasks seem extra hard sometimes and sometimes I feel fine. Yesterday, I actually did something beyond going to the hospital and going home. I attended a memorial mass for the passing of my step-siblings father. On the way there I almost had a panic attack while driving on Rt. 3 because some guy cut me off and when I slammed my brakes my stuff went flying, including the phone with the directions. I completely reacted irrationally considering and it was not until later that I could look back and think, "hmm I am more stressed than I thought." As for the mass, I was more concerned with being there for them that I really did not stop to think if I was in a good state of mind to sit through that kind of event. Well, about five seconds into the mass they started singing "Be Not Afraid," and I completely lost it. I mean absolute hysterics. Which just teaches me I am not as cool and calm as I deceive myself (but honestly, for all you non-Catholics out there, this was probably the worst song for me to hear).

In general, I feel better only when I am at her side, my whole body relaxes and I find my most peaceful moments there. Her doing so well is making us both a little nervous in our own way of waiting for the next shoe to drop and hoping it doesn't. We know there is a long way to go, but are cautiously optimistic.

One of her respiratory therapists was just in here and mentioned nonchalantly how the OR was transported to her room last week because the surgeon did not feel she was stable enough to be moved downstairs. The NICU rooms were set up for this, but it does not happen often I am told. Every time I hear something like this it gives me the chills because it just reinforces how serious the situation was last weekend.

As for the last long entry I did on her surgery, I realized after I posted it that I had missed a million things. I had actually written down a list of points I did not want to forget the day before I wrote the post, but when the time came I decided I was too tired to double check everything because I do things like that. When I looked later, I saw I missed about half so maybe when I have the time I will flesh out the event. We'll see.

One thing I did leave out, that I wanted to add today, was a really cute thing the doctor did. After her surgery when they were putting in her PICC line and arterial line, they both them both in her scalp. Doing these took over an hour and a half, she has bad veins like her mother. Anyways, afterwards the nurse handed me a little packet. They had to shave parts of her head to put these in, and while in the midst of this, her doctor thought of keeping the hairs and putting them together for us. He labelled the packet "1st Hair Cut - 2/22/15". I just love how they are so busy, but they stop to take the time to do things like that for the family.

So, this entry was a little choppy I know, but we can look at it as a really great example of all the different directions my thoughts go as they run around my head all day. So, yeah, totally did it on purpose.

Here is my sweet girl and your not daily dose of Miss Natalie Rose:

Cozy Girl

Both Mommy and Natalie extremely relieved to be back to Kangaroo Care

Hello world, I'm adorable. Happy and awake going back into her bed after 3 hours hanging out with Mommy.