Friday, August 21, 2009

10 days?

Wow, where do i start? As all of my lovely followers know, X has been diagnosed with Unrestricted ASD, which means he has a hole in his atrial septum. The unrestricted part is where it gets scary, the hole itself is so large there really is no actual wall between his left and right atrium. This is causing the fluid that should be pumping from the left side of his heart and down through his body to bypass the body and go straight to his lungs. Sooooo, he still has quite a large amount of fluid in his lungs. As a matter of fact, it is getting worse, not better, like they would expect it to with him on the Lasix (a water pill). The lasix is used to prevent fluid retention in people in heart failure, which X officially has.
X also has VSD, pretty minor, not a HUGE deal, but it is also not improving at all, and is VERY unlikely to repair itself anyways. This is where heart surgery comes in. They want to wait to around 3+ months to repair his heart to get him bigger, seeing as his heart is around the size of a kumquat. The bigger his heart is, the easier for the surgeon to repair his heart.
X also has a 3rd, very minor heart defect, a PDA, which, according to EKGs is repairing itself on its own. It is so common they actually neglected to even tell me (grrrr). I just finished googling it, and this link explained this really well.
On his due date (Aug 20), X was having what the nurses call "picket fence breathing". This is basically rhythmic apnea, breathing for a few breaths then stopping for a few seconds, then he would do it again. He was really destating from that, and the nurse put him back on a cannula of room air at just 2 litres. This helped long enough for them to administer a loading dose of caffeine. The caffeine is rarely used on a full term baby, let alone a 3 week old full term baby.Thankfully, it actually worked, and they were able to wean him off the cannula 5 hours later. They are hoping he behaves as he was also rather tachypneic (rapid breathing) yesterday and today.
X was very irritable at his 11pm feeding and at his 2pm feeding, the nurse discovered he was running a fever, and the called me to ask for authorization to do a spinal tap and a full blood culture on him. He is doing better today, but they have him on three different antibiotics.They are precautionary as getting an infection in his state could be devastating.
The cardiologist said she is concerned with the fact that he has not gained ANY weight since birth, especially since he is getting tube fed exclusively every other feed, and for over half of the other feeds. He is on 24 calories every feed, which would be the equivalent of eating fast food for an adult. This is a big sign that his heart is working extra hard to work. At this point he has until the blood cultures come back (3 days) before they put him on another heart medication. After that he has 7 days to make improvements on his lungs/ heart before they talk surgery. So he basically has 10 days.

My Dear friend and neighbor back in Yuma, Miranda, came and saw us. She was on vacation in Poway. We received 2 free passes to the San Diego zoo from a Nixon relative of mine that lives here in balboa. Since Andrew and Nathan (Miranda's husband) got in free, we all got in for absolutely nothing. It was a wonderful time and was good therapy to see her.
Miranda checked my mail for me and discovered my NCG friends sent me an amazingly generous gift to help us out. Words cannot express how much it means to me to have that support in this stressful time.


  1. I'm praying for you, Girlie. I have been reading all your posts but sometimes I just don't know what to say. Wish I could be there for you. Much love.

  2. We're glad to help!! Give X big kisses from all his NCG-aunties!!

  3. I only wish there was more we could do to make this easier for you. I am hoping he starts improving soon so you can take him home.