Slow and steady, with a dash of Viagra, seems to be a good plan so far. It certainly is going better than when her vent settings were being tweaked several times a day.
Most mornings Natalie's blood gases have been weanable so she is now down to 3.4 on the power. Ideally they want her in the 2's before she moves to the conventional vent. I was looking at a text I sent to Stephen last Thursday and she was just down to 3.8. Nice, slow steady progress. They will only reduce by 0.1 at a time because they want to be as gentle as possible.
Her O2 requirements have been trending down as well. Sunday during our visit we both basked in Natalie requiring only 36% O2 while saturating in the low 90's. All that while being on her back-her least favorite position. The doctor was very happy but feels the improvements are a coincidence and not due to the Viagra. We feel that it has been making a difference, just slow and not dramatic. In general she has been in the 40's but dips into the 30's more and more. Late last week nurses would say that they got her to 38% for 40 minutes. Now it is not uncommon for her to be at 37% for hours at a time. Last night she was in the 50's and we were getting concerned but by the time I arrived there this morning she had sorted herself out and was back in the 40's. That was a huge relief for me...I am hooked on her lower numbers and have a harder time emotionally when her requirements go up. It is paralyzing to not know when things are a blip or the start of a downward trend. Hmmmm....that paragraph has a lot of numbers. Such is how I evaluate my life right now. If I can someday say she is in the 20's I will write the entire post with exclamation points and smiley faces. It will be like a million Christmases.
Her next echocardiogram is scheduled for August 25. That is the birthday of one of my top favorite nephews, so I am hoping it is a good omen. In the meantime they are planning some minuscule nitric oxide weans. They went from 16ppm all the way down to 15ppm and plan on holding her there for a few days before attempting another wean. It is a different approach than usual-the original goal was to go down 20% every 3-4 days. I think all the plans for nitric were tossed out when she developed NEC. Certainly no one thought she would be on it as long as she has been.
The echo is for monitoring the pulmonary hypertension. Hopefully it will show improvement or at least no change for the worse.
Yesterday she had great adventures with her ND tube. It managed to retreat from her intestines back into her stomach. Her stomach then quickly filled with milk and she became agitated. Luckily the nurse was on the ball and figured out the problem quickly. The milk was aspirated and they replaced the ND tube. The placement was confirmed by X-ray and they restarted feeds. After a short time the line was no longer working when the nurse tried to give her meds through it. Another look at the X-ray and there was an obvious kink that was missed. While the nurse was trying to adjust it the tube sprang a hole and splattered Natty, the nurse and the bedding. Oh, the life of a nurse. I can only imagine the joy of having another woman's breast milk shot at you from a hole in a baby's nasal tube. I hope she is paid well. Again, it was a lucky thing that the hole was found and that it was outside her body. That would have been a disaster if she had a leak on the inside.
By this point Natter's belly was full of air from tubes being placed and manipulated so her girth was up 3 cm. They held off on replacing it until she moved the gas out ( Or as one nurse cleverly says-shooting bunnies. I think the medical term is tooting.). Now that many of her meds are through the ND tube I was anxious for it to be replaced. If the next attempt failed they were going to wait for the morning so the gastroenterologists could take a look. In the end, she did have a working ND tube by the end of the day and only some of her meds were a little late. I had just been thinking that she went at least 6 days without an X-ray, which is a record for her. Then in one day she had at least 3 to get the ND tube replaced.
Her hair continues to grow at an incredible rate. She may have a ponytail by the time she graduates from the NICU. It looks darker now and I am placing my bets on her being a brunette. I knew Natalie was a dark haired name.
Monday as we were driving into the hospital Annie asked me if this was the "hopsibul" I used to live in. I told her yes and she said "that was sad." We ended up taking the green elevators as there was a big back up at the red ones. I usually avoid the green as they open right at 3-1200, the floor I was incarcerated on. I peeked in the glass doors and saw one of our favorite nurses so I decided it was time to revisit the unit. It was a little weird-sort of like going back to your old high school. Things looked somehow different. The walk from my old room to the nurses station is about half the length I remember. I imagine every walk seemed longer than it was when I was trying to not cause more leakage or set off contractions. I joke about having post traumatic stress disorder from the pregnancy, but really it is an unsettling feeling to go back there.
Seeing the nurses, however, is always wonderful. I sometimes cross paths with them in the NICU, but not nearly enough. I frequently wish that we could have taken our favorites right along with us and they could care for Natalie now. I can not say enough about how those women saved me during those difficult weeks of bed rest and they will always have a special place in my heart.
Annie was shy for our visit to 3-1200, but as soon as we walked out the door she came to life. "Hey that's where I used to get snacks (pointing to vending machine)...remember Mama? And that's where we went on wheelchair rides and I used to look at the tiny babies. They were sooo cute and tiny. And we used to get crackers and feed them to the birds and you sat on the bench and watched. Remember Mommy? We used to feed the birdies outside sometimes." I am so grateful that as much as she remembers it as a sad time, as much as she reminds me daily that I used to not be able to pick her up, she also remembers the good things. She still loves her favorite nurses from 3-1200 and she continues to form new friendships in the NICU.
Speaking of Annie, it is late and she just woke up. I'll go tend to her and ask that you forgive typos and anything that plain just doesn't make sense. Right now we are very grateful for every stable day that Natalie has and we of course thank you for your thoughts and prayers.