The Light's Still There, but the Tunnel's Now Longer...

Where to begin...

Since our last post, things were not getting any better for Caili. Last Saturday, she was on CPAP but very agitated by the contraption which was making matters worse. So Sunday morning they tried the nasal cannula again but with little success. She was still breathing very fast and requiring more oxygen support. Sunday evening they tried her back on CPAP. Hints of intubation and the vent were lingering in the room. Something no one wanted to see again.

On Monday AM, the doctor that ordered the test to examine the blood vessels in her lungs the week prior was back on rotation. As we wrote about in our last post, she had been concerned that a condition Caili had back in December called pulmonary hypertension had returned.

Although we mentioned in our last post that the test showed she did not have this condition, the doctor on rotation was not convinced. She spoke with the cardiologist again this past Monday AM and after reviewing not only the test results but Caili's history and current symptoms, they concluded that she was in fact suffering from this potentially life-threatening condition. The doctor explained the treatment to us and that they needed to start it right away.

So what is pulmonary hypertension? Well, a brief layman's summary is that it is high blood pressure in the arteries that supply the lungs (pulmonary arteries). The high BP causes the vessels to constrict and their walls thicken, so they can't carry as much blood and therefore oxygen to the heart and body. The immediate effect is that Caili's blood isn't as well oxygenated and she works harder to breathe. The long term (and life threatening) concern is that this causes the heart to work harder and can eventually cause it to fail.

Since last Monday, Caili has been more stable and seemingly more comfortable. The goal is to wean her of the treatment slowly. Unfortunately, in order to truly have the best long term outcome, the plan is to continue with this treatment for at least another month, maybe more. So, while this is not good news, it does seem like we have caught it in time and simply need to let the condition resolve with the current treatment plan and time.

In the mean time, a pulmonologist from Dupont who had seen Caili when she was very sick in December came back for another visit and opinion. He agreed as well with the pulmonary hypertension diagnosis but also expressed his concern that Caili is still micro-aspirating milk into her lungs. Even though we had the milk scan test done which showed she didn't have reflux, it was just looking at a 4 hour time period. The pulmonologist feels that this micro-aspiration is occurring in tiny amounts over time. He is basing this opinion on her signs and symptoms and the fact that the xrays show little healing even though Caili is getting bigger and growing more lung tissue.

Given this latest set back and diagnosis, Caili is once again only being fed over a longer period of time via a tube in her nose that goes directly into her stomach. As the doctors explain, we can't afford to fill her belly all at one time (by bottle or by nursing) and take the chance that she does aspirate milk into her lungs. So, the plan is to do another test that looks at whether or not she has reflux over a 24 hour period. I hope that will take place this week but is very dependent on how Caili's breathing is progressing.

It has been a really tough week filled with such feelings of fear and frustration. But, I force myself on an hourly basis to see the glass half full. Caili is still fighting with us and doing so well in so many other ways. She has very sick lungs and needs some more time to heal. But, we are ever hopeful that she will lead a happy life once we get out of this crisis.

On a lighter note, Caili is now a little over 6 pounds and is doing a lot of what you would expect for a full term baby. She is actually 19+ weeks old but really 4 weeks adjusted (how old she would be if she was born on her actual due date). She is only expected to do things that a 4 week old would be doing. She is starting to focus on people when they talk to her, follow objects as they are dangled in front of her, clasp her hands together and smile (when she has gas pains). She is heavy in my arms and really starting to fill out. Tim and I love spending time with her and can not wait to get her home.

I am sorry for such a long and technical post. But, it is hard to explain without much detail how we can go from a post where we feel we are getting so close to coming home to a feeling of many more weeks ahead without doing so.

Please continue to pray for all of us as we take yet another difficult step in our journey.