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.

Good News Abounds, Yet Still A Step Backward

After more than two weeks of thriving on her high flow nasal cannula, on the lowest levels of support Cailin's ever needed, Cailin took a step backward at 5 AM this morning and is back on CPAP. Her breathing had become labored on Monday of this week--she was frequently breathing over 100 breaths per minute when 40 to 60 is normal for her. Her oxygen saturation (the amount of oxygen in her blood) had stayed very good--until last night. They had tried increasing the "flow" of her cannula, increasing the oxygen, and at 5 AM decided CPAP was required. It sounds like she's doing well on it thus far.

The fast breathing had coincided with the return of oral feeding, which of course had everyone fearing an aspiration issue. So, they scheduled a test called a milk scan in which they combine milk with a radioactive isotope that they push into Caili's stomach via her feeding tube so that they can monitor where the milk goes on a nuclear scan. To do this, she had to be moved to the nuclear medicine area (she went to nuclear medicine for the "swallow" test they ran week before last too). Moving her is an ordeal--according to Lauren who saw it, you would think she was desperately ill to see all the equipment they keep at her side to ensure a safe journey. It's also exhausting for her.

They planned to run two tests on Thursday, one with a small volume of milk and the second with her full volume (2 ounces). The first test when fine, but when they transported her back to nuclear medicine for the second round of the test, she hadn't sufficiently digested the milk from the first round to start the second. So, they transported her back to her room and told us they'd have to wait until Friday. Yesterday they did the test with the larger volume, which required an initial transport for the test and a follow-up transport several hours later to see if any of the radioactive molecules had found their way to her esophagus and / or to her lungs by way of reflux that Caili then aspirated. Not only had she not aspirated anything, but her reflux is so mild that they can now stop treating it with medication. So, once we resolve the current respiratory issue she can start eating at will.

Caili also had a test to check the blood vessels in her lungs yesterday, and all looks well there, which isn't surprising but certainly is good. So, as one of the doctors said to us, Friday was a great day on paper, just not a good day for her in terms of her breathing.

What's causing her to have a difficult time breathing once again? We don't know, but fear a cold, which given the state of Caili's lungs would be serious. Thankfully we're told she's strong enough now that it shouldn't be a giant setback like the one that occurred in December. We certainly hope that proves true, but obviously we're frightened. We'll keep you updated on her progress, and obviously we appreciate all of your continued prayers for her.

One final bit of news to close this post. As some of you know, Lauren's pregnancy complication was that she conceived twins. The twin was a "molar pregnancy," which is a non-viable pregnancy that results in rapid growth of placental tissue--which, left untreated, can become cancerous. Molar pregnancies are uncommon, and in combination with a healthy twin are nearly unheard of, and rarely are they continued. Most doctors in the US feel it is too risky to mom and the baby to continue. Thankfully there is a group of doctors in the UK that have been studying this rare situation, and their studies and the personal encouragement of one of them via e-mail along with great support from the doctors at Jefferson gave us the hope we needed to move forward. I continue to be amazed at how selfless and courageous of a decision that was for Lauren.

Continuing meant not only risk of an early birth, but risk of severe and potentially life threatening hemorrhaging (which is ultimately what caused Caili's early arrival), and the risk of a disease called persistent trophoblastic disease (PTD), a disease that can turn malignant. PTD means the molar tissue won't stop growing after removal (it could not be removed until Caili was delivered), and is 100% curable--with chemotherapy. PTD can easily be monitored as it has a marker, which happens to be the same hormone that indicates pregnancy, hCG. Well, we're thrilled to report that Lauren's hCG has recently returned to normal, which means that she doesn't have PTD and almost certainly will not require chemo.

Thank God. Lauren's proven her incredible courage and will--no further challenges are required. Clearly she passed her courage and will on to Caili, who has faced more than enough tests herself. We yearn for the day when her challenges will be the typical ones of growing up and not a daily fight for such basics as breathing and eating.

Eating Again!

A quick update; Caili's test on Tuesday went well. It showed that she was very "coordinated" with her swallowing and that she did "protect" her airway. So on Wednesday they removed the tube to her small intestine and replaced it with one that goes into her stomach. Now instead of feeding her constantly they're now feeding her every 4 hours, and running the feed over 3 hours, giving her one hour's rest before they start again. It's still not as satisfying as eating her full feed over a short time like would be normal, but she certainly is quite a bit more content...unless it's that one hour where she's not getting any food! Lauren calls that the "witching hour."

After a day of monitoring the feedings in her stomach, they were comfortable with feeding her by mouth, so on Thursday they fed her a small amount from a bottle. Caili drank it down like a pro, but wasn't pleased when she realized that was all she was getting. She drank the same amount yesterday (Friday) and seemed to enjoy it even more. The plan next week is that they will steadily increase both her frequency and quantity.

As for her respiratory status, not only is she still on the high flow cannula, but her oxygen flow is down to the lowest level ever--the lowest they go on the "high flow." We're astounded by her strength and overjoyed by it.

While this has been a trying couple of weeks for both Caili and Lauren--who now spends every minute possible at the NICU--it is obviously critical that we take the feeding process slowly to be safe. Hopefully the weekend will continue with good results and we'll have even better news next week.

Have a wonderful weekend!

Stable, Growing, and Desperately Hoping to Eat

In the time that has passed since our last post, Caili has been gloriously stable. Her first stint back on the high flow nasal cannula didn't last long, and she was back on CPAP on New Years Day. That was fine by us since she continued to do extremely well once back on it. And on Thursday night, she was again doing so well that they put her back on the high flow, and she's remained on it since then. Her breathing has truly never been better, which is a tremendous blessing. Here's a picture from Sunday:



However, Caili isn't her happy self. At times she is truly inconsolable. No one seems to be able to tell us for sure, but we're convinced the explanation is simple; we believe that she's constantly hungry. She is always rooting, searching for food, wanting to eat. Her feeding tube routes a truly constant trickle of breast milk past her stomach directly to her small intestine which simply doesn't make her feel full, satiated, content. At times her drive to eat seems manic, as if she feels she's starving, and she's nearly impossible to comfort. It's heartbreaking to experience.

Tomorrow (Tuesday), we hope to get back on track to resolving the problem. They'll be conducting a test that hopefully will help to determine the extent of her reflux problem and whether she able to "protect her airway" or if she is aspirating into her lungs. Of course, we can address reflux with medication but aspiration will more difficult to address. If all goes well and the study concludes she does not aspirate, they will start with moving the feeding tube out of her intestine and back to her stomach. And if that goes well, the next step would be allowing her to actually eat by mouth again. We obviously want to go slowly so that we can minimize the risk, but were excited and optimistic that she'll do well, and that soon she'll get the doctors approval to nurse again.

Until then, we're trying to focus on how well she's doing and thanking God for giving her the incredible strength to fight through such difficult challenges.

Please keep her in your thoughts and hope that the test results allow Caili to once again be fed in a more natural and fulfilling way. We'll update you later this week with the outcome.