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.