Amazing how fast time passes...

This first full week back at CRC has been good. Mia's bedroom changed 3 times while she was in the hospital and not all of her belongings got moved each time, so when I was looking for things, it was like a treasure hunt trying to find all of her things!! As of now, I don't think she's missing anything else, but we'll see! =) Now I'm making sure I write her name on every little thing so we don't totally lose it! Other than that, things haven't been too "exciting". =)

Mia's doing great - she's a little chatter box... I love it!!! She's actually cooing with inflections and everything. Even when I hear her on the phone, you'd never tell she even has a trach... she sounds like a "normal" baby! It's so adorable! She's starting to hold her head up a little better now, too.

I'm so tired, so my mind is drawing a blank of what's been going on this week.

Robert is still here in the area - right now he's working at Beale AFB north of Sacramento. Oh, I guess we put offers in on three houses. We'll see if anything gets accepted. Apparently they all already have offers (like most of the 1 story houses in that price range) and the realtor says if more than one of our offers gets accepted, we can back out whenever. I hope she's right! haha

Mercedes had her birthday last Sunday afternoon and she had a great time! It was wonderful seeing family and friends again - things have been so busy for everybody that I've hardly seen any of my favorite people! Mercedes was good for the most part... it was during her nap time, so she missed that, so that means we she cranky when we wanted her to certain things that she didn't want to do. She freaked out with the party hat... then she freaked out when I put her "Kiss me, it's my birthday!" ribbon pin on her shirt. She was crying because she wanted a Curious George tattoo, then she freaked out when she got it and she was crying so hard she almost tossed her cookies! She also started crying when it was time to blow out the candle.... she didn't want to play the 'stick the butterfly on the Curious George picture' (pin the tail on the donkey game). Other than THAT (haha), she had a great time! She mostly loved climbing the big redwood tree and running in the baseball diamond at the park with her cousins Arianna, Caitlin, Gracie and Josh. =) Arianna and Mercedes were making dust angels on the pitcher's mound... they were FILTHY!! It was a great day! We figured opening gifts wouldn't be the best thing to do at the park, so she opened the gifts the following morning. =) You can see those pictures here:
http://www.facebook.com/album.php?aid=107194&id=614762171&l=4225e10b5d

Tomorrow is the end of Mercedes' birthday celebration (three weeks, not too shabby for a 3 year old!) We're going to watch Curious George at a small local theatre! We're going to go with Arianna and Caitlin, too... it'll be lots of fun! Mom and Mercedes just left to watch it (it plays today and tomorrow for $1). It's Mercedes' first time to a theatre, so Mom wanted to get her used to the idea so she's excited for tomorrow. =) Tomorrow is also Robert's birthday!! I don't think I'm going to see him, but I'm sure we'll go out and do something at some point. =)

The little girl in the pictures with Mercedes is Julianna. She's a patient at the Children's Recovery Center and she and Mercedes love playing with each other! Yesterday was Julianna's 6th birthday, so I thought it'd be cute to get pictures of them together. =)
She's such a sweet girl - pray for her, too, when you remember her! I'm not exactly sure what her medical issues are, but she has quite a few. You can't really see her trach in the pictures, but like all the kids there, she has one as well. =)

Keep praying for Mia! She is doing something that we can't figure out what's going on.... her face turns blue, but her oxygen saturation is fine, her heart rate is fine... Brandon, one of the RT's, thinks he MAY know what's going on, but we just have to watch her more.

I'll keep you updated as much as possible...

Rachael <3

A short update...

Well, since it's me (Rachael) writing, this short update will probably get too detailed and end up being long, but I have to hurry because I have to take Willow to get his shots!! =)

Okay.. Mia is doing GREAT!! Praise the Lord!! She was so sick just 10 days ago - it's such a miracle that she's come through this especially since we almost lost her three days in a row.

She's ready to get moved back to Children's Recovery Center today! The paramedics came yesterday to move her, but when they loaded her on the stretcher her co2 was through the roof. They drew a blood gas to see if the machine was reading it correctly - and it was. 104. It should be in the 30's. They called Dr. Silva to see if they still wanted her moved, but he decided it'd be better to keep her in the hospital. Angela, the night nurse (who is also the nurse who got her from the ER) was so excited to have Mia one last time!! =) So were we... Angela's my favorite!

We think her co2 went up because the guys didn't know how to work the home vent, so something weird happened that they didn't set it so it would give her breaths, just pressure, so she was breathing on her own (just not very well). Poor baby. =) This time they're going to get an RT from CRC to come and set up the home vent since that's what they use at CRC anyway. =) My idea!! I'm so smart. ;-) haha

We're doing well - Robert had to work at Beale AFB this week and next week for a few days, so he went up to Sacramento yesterday to look at houses with our realtor on his way up to Chico. They have one more house to look at on Wednesday on his way back down to San Jose, so we'll see which one he likes best. I wrote the last check to my friend last week, so know we're also going to have to order checks and have them sent over here so we can actually make an offer on a house!! All these little things you totally forget about - we should have grabbed another book of checks from home before moving out here! =)

Well... I think that's about it for now...

Thank you so much for praying! Love to you all!

Rachael <3

Pictures (finally)

She's not wearing her cute clothes here at the hospital, so you'll just see her natural beauty! =)

Mia was so swollen at the beginning of her stay here at the hospital that she could barely open her eyes. This first picture was taken on Monday.

As you can see from the second picture, she's back to normal! You can also see that she's opening up her mouth so much more! I'm so happy about that! =)

I'm so proud of Mia!

Aside from Mia continuing to recover SO well from her pneumonia, I've been working with her with taking a preemie pacifier. She has a really stiff jaw and very low tongue muscle tone (I couldn't even see if she HAD one until she was a few months old - that's how tight her jaw is).

Jessica, her night nurse while at Sunrise Children's Hospital in Las Vegas, sent us 4 preemie pacifiers in the mail last week, so I've been working trying to get them in Mia's mouth. They are so tiny - maybe a little thicker than a pencil - and it would take quite a bit of effort to pop it in there. WELL... ever since I got the paci in the very first time, Mia started chomping on it!! Sure she's not sucking on it, but she's working her jaw muscles and she's opening her mouth much more!! I took a bit of a break with the paci because I didn't want to aggravate when she was already going through enough with being sick.

I starting working with her again a day or two ago and noticed that when the paci isn't in her mouth, she opens it a LOT more and she's moving her tongue around as if she's sucking!! I've also noticed that she seems to be swallowing a lot more - she hardly has any oral secretions (and the meds should make her secretions increase)! Just now I was suctioning her mouth to see if there was anything in there and she was opening her mouth quite a bit and even was sticking her tongue out!!! I'm SO proud of my baby!! =)

Mia has improved so much - she looks better now than she did even a month ago which makes us wonder if she's been sick for a while. Her coloring looks great, her face isn't swollen which makes her nose look bigger!! You could hardly see her nose before from all the puffiness, so this is a good thing! =)

Robert has this little hand-held computer (Nokia Tablet) that he put cartoons and movies on for Mercedes, but Mia now loves watching Mickey Mouse and the gang, too! Right now she's watching Donald Duck. =)

Robert finally got a start date for his new job! First day class will be September 3rd. Robert will be an instructor for Air Force ROTC (Reserve Officer Training Corps) at Sacramento State University! We're, of course, not exactly sure how it'll work out with him working and living there most of the week and coming back down to visit with us, but at least Sacramento is a whole lot closer than Las Vegas is! We'll do whatever we need to do to make this work! =)

Keep praying for our family and our little Mia. Mercedes is such a happy girl and loves to visit Mia at the hospital! She's able to visit Mia this time, so she's happy! This morning she was planning on what to bring to the hospital and she decided she was going to bring her train track set to set up in the lobby. I don't know how great of an idea that is, but that's what she wanted!! haha

We'll keep you updated as often as we can...

Rachael

More good updates

Mia is doing very well and is recovering nicely. Last night was uneventful and when Rachael and I came in this morning Mia looked to be doing very well and was very relaxed.

There was a minor hiccup this afternoon because the respiratory therapist was being a little overly aggressive. He was "following" the doctors order on turning down the vent but Mia wasn't tolerating the drastic changes very well. She started to desat and was hovering in the 60s and 70s. Two nurses and myself where watching this and pointed it out to the RT but his response was that she would adjust in a couple of minutes and that it was likely because she was being moved around and the probe couldn't pickup her O2.

One of the nurses pointed out that the monitor was showing a good signal reading and that whatever setting he had changed she was not tolerating well. Meanwhile I was looking at Mia's tidal volumes (how much air goes in and out of her lungs) and saw that she was getting about half of what she was supposed to get. I pointed this out to the RT and he made up a lame comment that it was okay and that she would adjust. At this point I had about enough and asked him what was wrong with just going back to what she was tolerating well since she obviously didn't like the new settings. At that point he finally conceded the situation and started bagging Mia to bring her stats back up. After a couple of seconds of bagging her O2 went up to 100% and she was looking much better.

The nurses and doctor later consulted with the Doctor who then ordered that Mia be put back to where she was previously with the vent settings and to try weaning her down a little slower. Apparently they tried making a change of 30% (the nurse was actually quite surprised by the amount) and now they are going to try stepping her down much slower.

So other then that interesting episode Mia has been pretty good. Her stats all look good and they are going to continue weaning her down on the vent. For those of you that are wondering when Mia was struggling with the pneumonia they turned the vent settings up really high to try to keep her stable. Since her chest was so tight they had to use pretty high pressures in order to get air into her. Now that she is loosening up they are able to back off of the pressure but it has to be done slowly enough so that she adjusts naturally to the new settings.

God is in Control

Hi All, I want to thank everyone for their prayers and support. God has answered your prayers and she is doing much better now! We are so grateful to all of you that have kept Mia and our family in your thoughts and prayers. This little girl has an amazing future ahead of her, her life is a testament to the Lord and his power.

Two nights ago I spent the whole night by Mia's bed watching the Nurse and Respiratory Therapist work with Mia. At that time Mia was very unstable and had to be bagged quite often to keep her ventilated. The night nurse and RT worked very hard and successfully got Mia stabilized to the point where she wasn't needing to be bagged every few minutes. At one time during the night Mia de-satted all the way down to where the machine couldn't read a signal and her heart rate when from 150 all the way down to about 50. The nurse and RT did a great job of staying calm and bagging her until she recovered but this episode was way to close for comfort.

Once the RT started working to keep Mia's lungs open with Albuterol though Mia started to stabilize and she had a fairly calm night. When the day shift came in Mia had a couple of desat episodes where she needed to be bagged. Looking at the machine I could see that Mia's lungs had closed down and that she was working with about 30% of the normal flow of air that she typically would have. Of course with so little air movement it was hard to keep her oxygen up and her CO2 down. The new day nurse was bagging Mia every few minutes to Mia going. During this time I was trying to tell the nurse what the night shift had done to keep Mia's lungs open but the day nurse would not listen to me. She was working on the assumption that Mia was having seizures even though it was obvious she wasn't seizing and the problem was her airways were clamped down. Between sleep exhaustion and the pressure I was just about at my breaking point and ready to set this nurse straight but thankfully Rachael pulled me out of the room to let me cool down.

Later in the morning Dr. Silva who is Mia's doctor at the Children's Recovery Center and also works here at Good Samaritan came in to look at Mia. Listening to the questions he was asking and the comments he was making I could tell that he was pretty worried. From the chest xray Mia's left lung was completely clouded over with pnuemonia. Even worse, Mia was so tight in the chest that she was only getting about 30% of the air flow through her lungs that she would normally have. Even with the ventilator at high pressures they could not keep enough air moving to keep Mia's O2 stats from climbing through the roof. I desperately needed some sleep I was reluctant to leave because I wasn't sure if Mia was going to pull through on this one. Finally they got Mia somewhat stable and I felt good enough about her that I went back to Rachael's parents place and slept for a couple of hours while Rachael stayed with Mia.

I texted Rachael and called her a couple of times to find out how things where going. She said that they had given her steroids and that had opened up Mia's lungs dramatically. That was big turning point because now they where able to keep her lungs open and she was not needing to be bagged. Last night Mia had an excellent night nurse that did an awesome job at keeping Mia stable. She was very good about being proactive instead of reactive. She was patient in letting Mia work some things out on her own while keeping a careful eye on her. This was in contrast to the day nurse who both Rachael and I struggled to deal with. Rachael and I stayed in a small room for parents in the NICU and got some much needed rest while Mia was in good hands with her night nurse.

This morning Mia has been quite a trooper. All of her numbers have been very good and her airways are much more open. In fact Dr. Silva came in and told me he was very happy to see that Mia was doing much better. Her latest chest xray showed good improvement over the previous xray. He commented that he didn't know why she was doing better (of course we all know why...) but he was happy that she was.

So now Mia is resting comfortably and doing very well. She wakes up occasionally and looks around before she slips back to sleep. Thank you to all of you that have been praying for Mia. It's amazing how much of a fighter she is and how God has been with her and us throughout this whole experience.

I want to share a little tidbit that I wasn't able to the other night. For those of you that prayed for me as I drove out from Las Vegas. When I got the call from Rachael on Saturday that Mia was headed to the hospital I started to get the house ready so I could leave. Within about two hours I was on the road headed out of Las Vegas just as the fireworks started for the 4th of July. As I was driving I was not sure how I was going to be able to stay awake for the whole drive as it was already about 9pm and I had at least 9 hours of driving to do. I was expecting to have a rough night ahead of me wondering if I would even be able to make it.

Ordinarily I would listen to the radio to help keep me awake but the radio in my car gets really bad reception and I can only get stations only in the city. As I was leaving Las Vegas I decided to turn on the radio and listen to it as far as it would last which I expected to be about 10 miles outside of Las Vegas. In fact that night God had something else in mind... Not only did I have reception outside of Las Vegas, I had reception ALL the way to San Jose. In fact the odd thing about it was that I was picking up a San Jose radio station just when I had crossed the border into California and even more odd was that when I got to just south of San Jose I was picking up a Las Vegas radio station! For a car that usually turns to static just a few miles from town I was picking stations up that where over 400 miles away and had a whole mountain range between me. I was able to listen to the radio the whole night and stay alert for the entire drive. I gassed up in Las Vegas and did not stop until I pulled into the parking lot of the hospital. Thank you to all of you that prayed to keep me awake and alert because I could have never managed the trip without that prayer.

Well, it's time to publish this so those of you that are anxiously waiting for news can read it. Thanks again for all of your thoughts and prayers. Please continue to keep praying.

Robert

pray!

Mia is hanging in there... it's still really bad. There's so much fluid in her lungs that they're not expanding with the vent like they should be. The nurses and RTs are needing to bag her all the time and even then, her lungs are moving very little. Her co2 is still pretty high most of the time, though at times it does get down to the 30's and 40's.

Robert says at one point last night he thought she was going to crash. Both her oxygen level and heart rate were pretty low.

Mia is completely out on VERY strong drugs. They paralyzed her (except for her heart) so she won't fight as well.

It's so hard to be in this boat again -- having her so sick and not knowing what's going on. I haven't been so worried for her since her first month of life.

Pray for Robert and I... it's so hard seeing our precious littlest girl like this. Pray Robert gets the rest and nurishment he needs -- I think he'll be covering the night shift here in the PICU.

We'll keep you posted...

Rachael