Weekend update...

Hi Everyone,

Well, Saturday was pretty uneventful for Mia, which is always good!! =) She's healing up very nicely from the surgeries and is now up to full feeds, but right now it's just a continuous feed. Tomorrow, they're going to start grouping them together to get a more normal sized feeding so her tummy can slowly stretch back. Our goal is to get the feedings to 75ccs every three hours, then she'll be on continuous feedings at night (since I guess that's how it usually goes with babies who have a g-tube).

Yesterday, was very eventful... not in a good way!! Robert went to visit her in the morning, then I met up with him a couple hours later. Before I left the house, I called to see how she was doing and he said she wasn't doing very well and that she had desated (oxygen level dropped) to the 30's. It should always be, on everybody, around 95 to 100. He said she was fine, so I didn't really think much of it. When I got to the NICU, he told me that the nurse had to give her manual breaths with the bag to try to get her oxygen level back up to where it should be. She was doing good when I got there, so I figured everything was fine, so I didn't think too much about it after that. Well... about 2 hours later, they suctioned her trach and then a few minutes later, she was desating quickly. I found the nurse and told her what was going on and she rushed over to her, cranked up her oxygen level that the ventilator gives her, but that wasn't helping. She got back down to the 30's again. She called the doctor, so he rushed over to her bedside... he called the Respiratory Therapist and I just watched while Mia was turning blue. They were bagging her and once they got her reading up to the 70's, they sectioned the trach again, but this time the RT went a little deeper and got a glob that had plugged her airway so that no air was moving in OR out of her lungs. As soon as the RT pulled it out, Mia instantly turned pink, woke up and starting moving her arms, legs and head. Everybody was relieved... especially her Mommy!! It was actually rather refreshing to me to see the doctor and nurses scared because it just it meant that they know they're only human as well and don't always know what's going on. It was nice to see that they weren't just calm and relaxed and that they saw Mia's situation extremely important. I don't know if that makes any sense ... I know most people would freak out if they saw a doctor freak out, but I found it refreshing! =) The most important thing is that Mia is fine and has been fine since. =)

She's so alert and is moving her head a lot now... it's so nice to see that she's gaining strength in her little body! =) Now that all of her swelling is gone from her face, her mouth is exactly like Mercedes'! Same little lips and everything... it's so cute. =)

On my way to the hospital yesterday, I was listening to the Christian radio station and a song that I've heard probably a thousand times was playing.... and God totally spoke to me through it. It's MercyMe's song Bring The Rain (http://www.youtube.com/watch?v=e8HgAVenbUU&feature=related) If you'd like to listen to it, click on the link above. If you want to read the lyrics with it, click here: http://www.azlyrics.com/lyrics/mercyme/bringtherain.html

Sometimes I feel like I'm not as concerned or stressed out about Mia as I should be, but I know it's because God is giving me the peace and strength that I need to get through this time in our lives. I'm just so grateful that I'm NOT stressed out at all... I know that God isn't surprised at any of this - this is His plan for us. We don't understand why He chose for this to happen, but we trust Him no matter what. =)

There are some prayer requests that we have...

• Medically, there's nothing more that needs to be done for Mia (that we're aware of), so she's basically ready to go home, but we're wanting to try to find a chronic care facility that specializes in ventilator weaning that she can be at for several months so we can try to get her weaned off the vent as much as possible, if not completely. There aren't any in the state of Nevada, so we're hoping on finding one in the San Jose/San Francisco/Sacramento area. We did hear of one in Saratoga, CA, so if anyone knows of any others, please let us know!! The way it works (we think) is that Mia will need to be transfered to another NICU in the Bay Area, then from there, go to a vent weaning facility.
• Robert's commitment is up this June, but because he got a job change to work at Creech AFB (just a half hour away), we're here until December. So, being that we have to move in December anyway, whenever Mia gets transfered to another hospital, the girls and I will move to CA ahead Robert. Robert's boss is trying to see if he can get transfered to another base - Beale AFB or Travis AFB so we can be closer to family for daily support.
• If we're unable to find a weaning facility, we don't really know where we'll live since Mia will basically need a mini ICU wherever we are.
• As always, continued healing for Mia. God has shown His mighty works in her little life already!
• Pray that Mia will start to develop a sucking reflex and that she will master that skill! Also, that she will show emotion. I'm looking forward to seeing her smile!! =)

Thank you for your prayers!

Love to you all,
Rachael