Upside Down

Thursday, Natalie had her best day ever. She was on room level oxygen (which is 21% oxygen, what we all breathe) and she had almost no blips of her numbers. The dips she had were super minor and we had an awesome session of Kangaroo Care where I did not have to tickle her feet once to get her to breathe. Her nurses were optimistic that her tylenol treatment was working and they did a new EKG that afternoon to see if her PDA was closing. While they were doing her EKG, she started spitting up all her feed. They figured it was the pressure from the probe on her distended belly (remember it is full of air from her CPAP), but they noted it in her charts and mentioned it to the doctor.

Jimmy and myself went home that night flying high because things were looking so good.

Cue Friday.

We woke up to a call from the resident doctor that Natalie had spent the latter part of the night throwing up all her feed and that they think she has an infection. Considering I saw her spit up the night before, I was not incredibly surprised that it led to something more. It was the 3rd time they thought she might have an infection, so we were concerned, but not too bad. Jimmy went to work and I got ready to go to the hospital to check out the situation when the doctor called Jimmy and basically reiterated the same news, but said they were going to have to intubate her (put in a breathing tube). At that point, Jimmy decided to come pick me up, and we would go in together.

Then Jimmy got a flat tire. (Because, of course).

I went and picked him up at his office and we headed out. From Chester to Morristown is a one lane road that goes through the country and this was the way we were going when we got stuck behind the slowest car ever. While stuck behind this car, Jimmy gets another phone call from the doctor asking how soon we were going to make it to the hospital because she might have to go into emergency surgery on her intestines. Needless to say, at this point we starting panicking and there was no safe way to pass the car. So I told Jimmy to honk a little. It did not do anything, but when we finally got to Morristown where it turns into two lanes and we passed the car...it was a little, old nun driving (no joke). So, this at least provided some comedic relief.

We get to her room and there was about 12 people in there. Multiple nurses, doctors, surgeons, respiratory therapists, and a social worker. She was a weird greyish color that freaked me out more than anything. One of the doctors spoke to us and used the term, "but I really don't think she is going to die, I think she will make it". I think it is pointless to say that I broke down by that point. The head nurse spoke with us. The social worker spoke with us. She had a breathing tube in, they were giving her blood transfusions. They were doing a whole bunch of things I cannot remember at this point. They showed us her x-rays from two weeks ago and then now to show us what was wrong. It was a lot of information and emotions all at once.

When they finished messing with her, we just watched her lay there looking scarily lifeless. The nurse then told us that they had given her morphine when they intubated her, so that is why she was so passed out. That made me feel a lot better. Slowly, between the blood transfusions and antibiotics, her color came back. They ran tests and x-rays every four hours, and they slowly started improving. We calmed down and then waited to hear what was going on. The problem is her intestines are so enflamed, they cannot tell if an infection caused it or a problem with the intestines are creating the problems. So, we had to abide by the wait and see approach as they continued to x-ray on a 4 hour (then 8 hour) basis. We waited to see how her 8 o'clock bloodwork came out, which was good, so we went home and would call in to hear how her midnight x-rays went (they said they would call us if there was a problem). They were very happy with her x-rays and we both passed out until this morning.

We arrived (optimistically) thinking it would continue in this direction, but were wrong. Her most recent round was disappointing, they said. They were not worse, but not much better. Also, today we have a different doctor and surgeon from yesterday, so it is a different point of view. We just had our second x-ray and there was no change. The surgeon came up and checked on her and was not happy with what he saw, but there is still no obvious need for emergency surgery because they really do not want to open her up if they are not sure. The doctor explained that the bowels in one area of stomach have not moved and that is what they are concerned about because something seems like it is blocking it.

Up to the minute news: she had a large stool and her stomach is a lot softer. This made the doctor happy, so again we are waiting until the next x-ray tonight and hoping for good news. It sounds like the surgeons are worried about missing a certain window of opportunity with her, so I hope they make their decision soon, but I trust them and we are hoping for the best.

So please pray for our sweet Natalie Rose and we will keep you all posted.