Friends, we've had another of those weeks, the ones that takes months to heal from physically, spiritually, and emotionally. Yet, we're still here and have good news to share. But first, the pain.

In July's update, we mentioned Lena's ups and downs of screaming and vomiting mixed with happiness and health. We figured we would slowly see improvement over time, but instead we experienced a steady descent into more pain. More nights became filled with screaming and vomiting and her day time energies were dropping along with her appetite. By the end of August, the paleness came and her lips started becoming blue. During this time, her vomit came out black which we knew was blood, but the hospital said that this can be a side-effect of the G-tube and we should take her to the hospital if we see more serious symptoms. It's hard to describe just how difficult our situation felt. Sleep deprived, consumed with worry, and bearing the responsibility of knowing when something was serious enough to go to the emergency room. How are we qualified for that?

After a few more days of increased lethargy, Lena started vomiting during the day, not just at night. Those two things convinced us that she needed serious help at the hospital. So on August 29 we took her to Lurie Children's in downtown Chicago where we spent last fall to do most of our follow ups, and it was a good thing we did.

Turns out Lena was dangerously anemic with a 3.5 hemoglobin level. Normal numbers are around 12 and they do blood transfusions for anyone under 7. Yes, it was that bad. The doctors told us that if an adult had numbers that low, they'd be in a coma. Thankfully, kids are so adaptable that Lena was able to make it with just slow declines, instead of a massive crisis like a coma. Once we got to the hospital the doctors were confident she would be OK because they knew she would take to a transfusion well since she had one in October. Yet, it's hard to stomach the fact that little Lena was 'adapting' to a lower blood count for a long time and we didn't know. It's only now sinking into my mind how close we came to death, again. I don't think we feel any guilt because we believe we are doing the best we can, we just feel sad for her and so aware of our inability to see as we grope in the dark to navigate the maze of Lena's health.

The transfusion was a success and Lena's color and energy (almost) instantly returned! The big question came next, what was causing the blood loss and vomiting in the first place? After putting her under anesthesia for a scope, the doctors found severe inflammation and bleeding from the lower part of her esophagus. Turns out that her repair in October is putting tension on the stomach and pulls it up a bit, which is causing stomach acid to reflux into her esophagus. This explains why she vomits and screams particularly at night, because lying horizontal makes the acid more pronounced. We were prescribed medicine to reduce the acid in her stomach and also coat the esophagus to enable healing. We spent a few more days in the hospital to make sure she was stable, and then came home again on Friday, September 1.

I have to say, being admitted back into the hospital where we spent 5 months last year was a real hit When we signed in, they printed out the photos they had on file from a year ago and gave us a permanent badge, like we never left. We're being reminded again that the trauma isn't behind us, we are still experiencing traumatic moments which are so linked to the first that it feels like the same moment. The image that resonates with us both is that of a sword hanging by a thread over our head. The fatigue and anxiety of living in such an insecure place, where death could come at any moment, hasn't lifted since Lena was born. Yes, some things have improved, but I'm no longer sure we can expect to live free of the question, 'will we make it?' 

And at the same time, we are celebrating the transformation we've seen in Lena. The medicine has been exactly what she needed because within 24 hours she started eating and sleeping like never before! Yesterday she ate over 2 lbs of food! The past 3 nights she's slept the entire night (with only a 5 minute wake up). This is really good news that we pray continues, because we are in a long term waiting game. The doctors think that all her issues will get easier as she gets older, one because she'll be able to tell us what is going on, but also because her body should heal, making her esophagus scar tissue softer and therefore easier to swallow, and making her esophagus longer, therefore bringing her stomach back to a normal place and reducing the acid reflux.

We can't wait for these permanent changes, but for now we are glad to have her symptoms managed by medicine and pray that the sword doesn't fall again. 

As always, thank you for your support, prayers, and messages.