Better Today

First of all, Justin's raise finally went into effect! This has been rumored since SEPTEMBER!! It's not quite as high as we would have liked, but a little raise is better than nothing! We count ourselves very lucky (blessed) that Justin has this job. It's not a fun job, he has to get up very early, and he's definitely overqualified, but we have awesome health insurance, which as you might imagine, is a really big deal right now.

Brigham is looking much less puffy today. The hemofilter did a very good job of helping pull off some of the extra fluid. After looking at his echocardiograms, the doctors said his veins and heart looked a little "dry" though. (Which is not as weird as it sounds. I don't know how to explain it). So anyways, today they turned off the hemofilter and are letting Brigham's kidneys do the work of getting the rest of the fluid off.



They also stopped one of his blood pressure medications, which is good because that means Brigham is holding it up on his own. A few minutes after I got to the hospital today, they took his ventilator off "rest" settings. He'd been getting 10 breaths per minute, now he's getting 20. They changed some of the pressure settings too, but I don't know what they mean and therefore I can't explain that part. The point is, they are starting to "reinflate" Brigham's lungs. By doing this, more oxygen and nitric oxide will be able to get into them and they will hopefully start functioning more like they are supposed to.

The pediatric surgeon explained pulmonary hypertension *PPHN* (high blood pressure in the lungs) to us like this: All babies have PPHN in utero because their lungs don't need to really function; they're getting oxygen from mom through the placenta/umbilical cord. When a baby is born and takes its first breath, the oxygen rushing into the lungs triggers the PPHN to relax and allows the lungs to open and function.

So now that his lungs have had 11 days to rest (on ECMO) turning up the ventilator settings a little and allowing more oxygen and nitric oxide in his lungs will hopefully help the PPHN go down.

The "plan" (remember, there is no real planning when it comes to Brigham's situation) is to recheck an echocardiogram on Friday morning and if it looks "good", possibly do surgery Friday afternoon. Everyone cross your fingers and pray, but don't be disappointed if something changes.

And an extra few notes since everyone keeps asking how the rest of us are doing:

Justin is sad he had to go back to work. He got a week and a half off (including the weekends) and going back to the real world is always tough. He's still my rock though and is amazing at doing whatever needs to be done to help our family, even if he doesn't like it.

I am having up days and down days. More often, it's an up day and I really do feel good, my back is feeling MUCH better and I'm handling the emotional roller coaster ok. Occasionally, I feel extremely overwhelmed and tired even though I'm totally getting sleep. Overall, I'd say I'm doing pretty good :)

Carrie is adorable as always. She's figured out the system though. She knows I "can't" pick her up and will sometimes run away from me (for example, when it's time to get jammies on). She points to the bottles and watches me when I'm pumping and says, "Making milk for Brigham?" (soooo cute!) She's also started to recognize when she sees certain people/friends, it means mommy is leaving and she gets nervous and clingy. Today when I met my friend Libby to drop Carrie off, she didn't want me to go. I told her, "You get to play with Libby while I go visit Brigham at the hospital, ok?". She sniffled and in a high-pitched shaky voice, said, "Ok, visit Brigham..." and the crying was over...

We're holding out. Keep praying. It's working.