11 weeks old today!

Hi everybody,

This is going to be a very quick update because it's too late for me to be up, but I know if I don't write now, I won't get it done. =)

Mia is doing pretty good. Yesterday, they changed her trach to a cuff trach (it has a little "balloon" at the tip of it and they can inflate it so it expands to the width of her airway) because she had a really big airleak. The pulmonologist, Dr. Benson. thought that maybe because there was such a big leak that maybe the ventilator was reading the leak as breaths that Mia was taking. They switched it out and Mia didn't really respond too well to it, or so they thought. They also gave her a very small dose of Vilium in hopes that it would relax her facial muscles, but it kind of knocked Mia out even though it was such a small dose, so it relaxed her a little too much! So they're thinking that the Valium relaxed her so much that she didn't breathe on her own, so once that wore off, she started to breathe above the vent again, though not as much.

Mia had an MRI scheduled for tomorrow or Friday, but it was cancelled because they thought that the images that Sunrise did were sufficient and didn't want Mia to have to go through it all over again when things probably wouldn't have changed too much. They said they normally don't order another MRI until after the childs' first birthday, so we're going to wait until Mia is around 12-18 months old.

We had the meeting with the neonatologist and neurologist yesterday and we think it went well. Apparently, from what they saw on the head ultrasound last week, Mia has Hydrocephalus again, but they're going to just watch it for now before they decide if she'll actually need the shunt surgery. They also said that the main part of her neuro problems are in the cerebellum (I'm no expert, but I think they said that's the back part of the brain). I need to do my research, but they said that that is the part that controls breathing, etc. They said that her brain is underdeveloped ... Robert would probably remember more of what they said - I'm so tired right now!

On Monday, Dr. Benson performed a broncoscopy (a little lighted camera down her nose into the airways) and they had a really hard time visualizing Mia's vocal cords. They also said that the walls of her airway was either swollen or there was extra tissue. They're not sure if it's a 'birth defect' or if it's because of having the Et Tubes down her throat for 6 weeks. They did say that it looked like, when they did see them, that her vocal cords may be paralyzed. I'm not sure if we'll find out any more about that while we're here at Children's Hospital Oakland or if that's just something we'll have to wait and see.

Robert went back home to Vegas today. He's pretty lonely at the house without his three girls, so keep him in your prayers! We're not sure how long he'll be there. I think he might be there until he gets his orders, but he won't get them until Mia is transfered to Children's Recovery Center. Once she's there, he'll get his orders and then we can make an offer on the house! In this market, it's likely that it'll still be available, but if it's not, we now know what exactly we're looking for - and if it's God's will, it WILL work out. =)

I was thinking the other night that I will never live in the same city with Mia until she's actually at home!! When she was at Sunrise in Las Vegas, I was home in North Las Vegas. Now that she's in Oakland, I'm either in San Jose or in Castro Valley. When she's in Campbell, I'll be in San Jose! When she's home, I'll finally be home with my baby - where we belong!! =) I can't wait for that day... =)

Thank you all for your prayers - it's been so encouraging to see all your responses!! I know there are so many of you who are praying, but I haven't heard from you yet. Even if you've told me verbally that you're praying for Mia, I'd still love for you to send me an email. =)

If you're praying for Mia, or have ever prayed for her, please let us know! Please include your name; your location; if your kids are praying, include their ages... if you're in a group/school that's praying for Mia, name the group; how many people and location. Email it to me at rachaeladamis@yahoo.com

I still haven't forgetten about pictures - it's so different not being at home at my own setup, so I will get pictures added as soon as I can!

Love always,
Rachael
(Maybe this wasn't so short afterall...)