Still doing good...

Mia is still doing pretty good... she'd been a little sleepier since about Saturday and a little less active and she kept rubbing her face and doing other things that made me realize she wasn't feeling as great as she had been a few days before. I noticed more drainage from her ears, but didn't really think too much of it since that's been happening off and on since getting the tubes in almost 2 months ago.

But I just kept watching Mia and knew she wasn't feeling well. I told Monday's evening nurse about more drainage from her ears, so he told the charge, but the charge just said to make a note of it. (Whenever I saw the drainage, the nurses couldn't - bad lighting or whatever. It was strange how I could and then she'd look ok when they'd check just seconds later.)

Yesterday morning, Amy (one of our favorite nurses) had her yesterday morning and I told her about the drainage. She told me that she didn't see any, but that she'll tell Dr. Silva when he came in, and she did. He checked on her before he left in the afternoon and sure enough - she has a double ear infection. They're assuming that it's just from her having pneumonia and it didn't quite clear out - just moved north. =) I'm so glad Amy trusted me and told Dr. Silva even though she herself didn't see anything! Now they know I don't make stuff up!! =) (Not that they really think that or anything....) =) So they started her on antibiotic drops for her ears for 10 days.

Other than that, we've been doing well. It's been great being able to have Mercedes and Mia together again! They are really enjoying being with each other - it's really cute to see that!

Mia is getting very interactive with toys! She loves light-up ones and is trying to figure out how to make the lights turn on. =) It's really sweet!

Mia has been seen by an Early Interventionist (Early Start - school/therapy/etc) and had her 6 month check up to make sure she still qualifies for the program. Because of her delays, and the fact that she is improving, she does! When she started in September, she was basically scored at 0 months or under. Six months later, I'm happy to say that she's 0 months in a few things, but in a few she's 3 months and a few others, she's 5 months!!! =) She was scored a month ago, so she's even improved more since then - we're all very happy of her progress! Keep praying for Mia! =)

Robert had a Spring Break trip to Vandenberg AFB near San Luis Obispo, CA, so he and another Capt. chaperoned around 35 ROTC students. They went in a charter bus - I assume it went well. They left Friday morning and got back last night. Robert should be coming down to San Jose today and will be here until Tuesday morning. That will be nice! I know he's excited to see his girls and to see how well Mia is doing now! He hasn't seen her since the 2nd day she was in the PICU almost 2 weeks ago.

Have a wonderful Resurrection Day on Sunday! =)

Rachael

My daughter completely amazed me!!

I still can't believe this - and I am SO glad I caught this on video!!!! (She had been doing it, so I ran and got the camera and thankfully, she continued!)

Again, if you're seeing this in an email, you might been to go to the website to view the video.



Continue to pray for Mia - she's doing SO much better, though a fever came back today. And she's teething. =)

Rachael <3

My surgery

Oh... I rescheduled my surgery! =) It would have been tomorrow morning, but since Mia is just getting out of the PICU right now, there's no way I was going to be able to keep my appointment. We thought she was going to be back at CRC last Friday and if that were the case I may have kept the appointment.

My surgery is now scheduled for April 29th at 7:30am. =) After coughing a lot this past week, my hernia seems a little worse now, but hopefully it's still small enough that the doc won't need to use any mesh to hold it all together! =/ You can pray for me about this - I've had several surgeries before, but nothing really like this and I'm not looking forward to it. I know it's not going to be anything like the c-section, but just the thought of it doesn't make me eager to have it done! =)

Rachael

Finally - a blog update!

Whenever I have a few minutes, I typically just update using my Facebook status because it's so much faster. But at the same time, I can't be very detailed in a status. =)

Mia is doing a lot better. As of Sunday, the pneumonia is gone, but the infection and other hospital bugs (MSRA and another stronger bug) still remain. On Monday, Dr. Silva came back on his rotation and said he wanted to be a lot more aggressive to get rid of the bugs, so he started her on steroids to help with the inflammation in her lungs, then changed one of her antibiotics from IV to an inhaled treatment to help kill the germs in the trach itself as well as just getting the drug deeper in and throughout her lungs.

Mia has been so perky and happy, but very bored here in the PICU! She definitely loves watching TV, so that's good - at least something is holding her attention! We finally got some snuggle time in yesterday for about an hour!! Wow.. after a week of not holding her, I've discovered something. MIA IS HEAVY!! haha My arm was killing me!! =) Then I went home and held Mercedes - and boy is SHE heavy!! =) I can't believe how big my girls are!

Mia will be going back to CRC today after 5:00pm. I will go over there to pick up an RT so they can either get Mia's settings just right on the different vent, or they will just bag her all the way over to CRC. We learned the first time she was in the PICU for pneumonia on July that AMR can't get her settings just right - and the RT's here at the PICU don't know the vents work that they use at CRC. I asked if they could simply get an RT from CRC who knows those vents inside and out to just take her back, so that's what they ended up doing in July, December and now this time. =) I'm very happy about that!

Mia is definitely ready to go back! It'll be a little different, because this time they are leaving the central line IV in until the remainder of the antibiotic course (up to a few weeks, I think). It'll just be one more tube to keep an eye out for, but all in all, it'll be great to be back "home". I'm so glad our favorite nurses were here taking care of Mia while she's been in the PICU. We love Angela, "little" Donna and Ron! =) We're going to miss them!

Mia did get an MRI done I think it was last Friday. Dr. Silva didn't really have too much to say about it, but he's going to send it to a neurosurgeon at Stanford to get his opinion to see if there will even need to be a course of action. I'm not sure when we'll hear anything back from that.

I think that's about it... I'll leave you with a few videos from the last few days. =)

Thank you so much for praying! Since we'll be leaving the PICU, I won't be able to update the blog or Facebook quite as often as I had been since we don't have internet access at CRC. Hopefully I'll make time when I get home to get on to update, but I know myself - it doesn't happen like I want it to! Updating once a week is a miracle! =)

Yesterday morning:


Yesterday afternoon:

Rachael

More videos from a couple of weeks ago...

Again, (I think) to view these videos, go to the blog web site. =)

March 7th - Mia rolling over!!




March 8th - Mia in The Little Room

Update

Day three in the hospital and Mia is finally resting a little better. She was pretty sleepy Wednesday, the day she was admitted to the PICU, but yesterday she was extremely restless and even with Morphine and Versed, she wouldn't fully go to sleep. They started giving her little doses every hour and finally she was sleeping a little better.

Mia has been diagnosed with pneumonia, strep and MSRA. They found out about MSRA yesterday, so they changed one of the two antibiotics so they'd be more effective.

It's Dr. Smyklo's rotation now (she's actually a doctor who covers at CRC when Dr. Silva is out of town, so she kinda knows Mia, too.) and she was able to get a central line IV (more permanent around the diaper area), so they were able to remove the IV on Mia's hand.

Mia will be having an MRI of her head/brain this afternoon around 3pm, so please be praying for that. I have been very adamant about getting this MRI for a while because the one they've been going off of was taken when she was only 1 day old. I personally want to know if her brain growth has progressed at all. I know developmentally, she's doing SO many new things, but I'm just very curious. Plus, one of the neurologists from Children's Hospital Oakland said she should get another MRI when she's around 12-18 months old and she's almost 13 1/2 months now.

Mia also hasn't had a BM in over 2 days - even with a total of 3 suppositories. I'm sure that's adding to her discomfort. Be praying that she'll stay regular as well. She typically is.

Robert left for Sacramento last night to get some vital work done for the semester. Depending on how Mia is doing (if she continues to slowly improve) he's going to work over the weekend and the regular work week next week, then he has a trip going to Vandenberg AFB near San Luis Obispo, CA, so we might not see him until the 30th or the 3rd depending on if he has to go straight back to work after the trip.

Mia shared the love with me, so now I'm pretty sick. Cold and chest congestion - I can't imagine how she feels especially because, for me, it's taking so much effort to cough it up. She can't take deep breaths to cough it out. Now I know why she got so bad SO fast! It's only been 2 days for me and I feel terrible. Pray that it clears out of me quickly because I'm supposed to be having my hernia surgery next Thursday and we all know I wouldn't want to be coughing after that! My hernia is starting to hurt, though, with all the coughing I have been doing. =/

I couldn't resist taking this picture... it was just too cute to pass up!! Mia was getting a sponge bath and she also got her hair washed... so cute!

I will keep you posted on here every day or so, but Facebook, I'm updating my status every hour or so.

Trusting God,
Rachael

Pictures and video

New pictures on Facebook: http://www.facebook.com/album.php?aid=151861&id=614762171&l=94af1a1e7a

Go to the last page of the album to see the newest pictures.

Here's another video from tonight!

Again, if you're opening this in your email, you may have to go directly to the blog to view it.

Update for our baby girl

Continue praying for baby Mia. Not much has changed since the previous update. They did get an IV started and she is stable to be back on the ventilator now. She's holding her oxygen saturation now at 50% oxygen instead of being fully on oxygen like she was when she was admitted, so that's a great improvement! Please continue praying for her and our family.

Also for me, since Mia gave me what she has, so now I don't feel very good. I can't imagine how she feels since she can't cough very productively.

Her left lung is completely junky and about half of her right lung is bad as well. She's on 2 antibiotics, even though her pneumonia is viral. There was some bacteria found in the sample they got from her trach, so they're hoping the meds will stop anything else from progressing.

It's just going to take time now for her healing - she's still pretty out of it.

I just got a text from Robert saying she just cut in her 6th tooth - on top of all this she's going through! My little lovey! =/

Robert and I spent the night with Mia by her bedside, and I had to leave around 10am because I just wasn't feeling well. It just seems like a cold, but there's already a lot of chest congestion. I'm trying to work hard to keep it from getting too much worse. Robert's going to spend the night with Mia again tonight.

Keep praying!

Rachael <3

Video of Mia from earlier today ...

Update: Dr. Silva came to CRC just before midnight and checked the xray. Her left lung is really bad, and Mia wasn't tolerating being on the vent anymore. She couldn't hold her oxygen levels at all. She was desatting while being bagged with 10 liters of oxygen! She's normally satting anywhere from 97%-100% on just .5 liters. Joe, her night RT had been bagging her for about 2 hours by the time the paramedics and firemen arrived. Mia was requiring an albutertol treatment every hour to keep her co2's down - even then, they would be in the upper 50's, then 20 minutes later, they'd go right back up to the high 70's, as high as mid 90's!!

Even though we'd prefer Mia to stay at CRC, there was nothing else they could do for her. She definitely needed to be moved to the PICU. We arrived here at Good Sam just after midnight. Thankfully we only had to be in the ER for about 20 minutes before heading up to the PICU.

They finally have her stable on the vent here, but on 100% oxygen and she's satting low on that (90%).

Be praying - she's really not looking good this time. We just found out yesterday morning she has pneumonia and I'm surprised at how quickly she's taken a turn for the worse.

Enjoy the cute video below from around noon this afternoon (or yesterday? Tuesday.) =)

I'll update as often as I can, primarily on Facebook, though, so if you have it, add me or keep checking my page.

Serving an awesome God,
Rachael <3

If you have are opening this in your email, go to the blog site to view the video.

Mia's Sick

It looks like Mia is going through another round of pneumonia. She started having symptoms over the weekend but over the last two days it has gotten progressively worse. They have had to raise her ventilator settings very high and they still aren't having much luck in controlling her CO2 and O2 levels. Rachael has been at the CRC all day, I came up to Sacramento for work this week. Unless things take a real turn for the worse I will stay here for the time being so Rachael will be dealing with this on her own.

Rachael and I have talked and we asked the CRC staff that unless absolutely necessary that they not take Mia to Good Sam's this time. Although she has received excellent care when she is there we always end up with a loss of continuity / familiarity with the nurses and RT people. At the CRC Mia is with people that are familiar with her and RT's that are just a couple of steps away at any given time. It will be Dr. Silvas call on this but we are praying that he will wait it out.

Finally, Michele and Joe are the nurse and RT respectively for Mia tonight. We are very happy to have them as they are excellent at what they do and they really care the best for Mia.

Thanks again for all of your prayers and support. If you want more updates please look at Rachael's facebook page. That is where she is posting updates as anything significant happens.

http://www.facebook.com/rachaeladamis?ref=profile

It worked!!

Last time I tried that, it didn't work, so I'm glad it's working now!! (Or that I finally did it correctly!)

This video was taken last Saturday (she got sick a few hours later). She's rolling to her side now!! =) Enjoy it!!

In case you're wondering, she's on her Resonance board. Any movement made on it is basically amplified to work on her hearing! They get so much feedback from their movements that it encourages them to make more! =) It's a tool given to her by her "Blind Babies" teacher. Blind Babies started soo long ago and their name seems like they're limited to just visually-impaired children, but they help with all the senses. Mia really seems to like her board. =) She becomes a lot more active when she's on it - it's cute! =)

Mia's doing a lot better. She still has a few loose stools here and there, but she's so much better. She's back to 100% formula, though she's getting it continuously. They tried to do a normal feeding (90ml) over an hour, but her tummy still wasn't quite ready. Maybe tomorrow?

Her Co2's have been really good. Jay weaned her down to 23bpm today, so she's making progress!! She continues to be a chatter box, which is GREAT, because when she's talking, she's breathing on her OWN - breathing above the vent!! =)

Mercedes, Willow and I drove up to Sacramento this afternoon and had a beautiful drive! We only had about 5 minutes of heavy rain, so it wasn't too bad! Thankfully that was right outside of Sacramento.

When we got home, Cedes and I had a snack on my bed and she wanted to feed me chocolate chips (since she can't have them due to her allergies), so she gave me the last few. I had already eaten some cashews that were in the baggie, but I didn't really think much of it. When Robert came home, he was with Cedes and he called me and asked me to come over to them. I heard the urgency in his voice, and when I saw Cedes, I was shocked!!! I said "What happened?!" She said she poked her eye -- then it dawned on me. She touched the chocolate chips that had been touching the nuts... the residue was on her fingers, and she touched her eye. Within 15 minutes, her eye was almost swollen shut!!

I rushed to the store to buy some Benedryl and now, about 4 hours later, she eye is almost back to normal. Hopefully tomorrow she'll look normal again!! We learned our lesson!




To view more pictures, click here --------> Random Pics
and here -----------> Mercedes' Photography (and of her eye)
and here -----------> Mobile Uploads

I'll try to keep everybody up to date with our lives - our very busy and too-tired-to-go-online lives! =)

Blessings to you all,
Rachael

Trying this out...

Praise God!!

Hi All,

I woke up to a phone call from Mia's night shift nurse yesterday morning saying that Mia had 1 bad diaper on the pm shift and 3 on her shift. I called the morning nurse before we left for church she said Mia had another two bad diapers on her shift already. Thankfully, her Co2 was pretty good!

After church, I called again, and Mia's nurse answered the phone. When I said who I was, she sighed really deeply and said "Oh thank God - I needed to call you." I wanted to know what happened!!! Just 10 minutes before I called, the nurse walked in to check on Mia and she said Mia was beet red and sweating, so they took her temp and it was 102.5!!!! =( My poor baby! They have her Motrin right away, then the CNA gave her a bath, put a cool dress on her and kept a cool towel on Mia's forehead. When I got to Mia's about an hour later, I prayed over her and when they checked her temp again, it had gone down to 100.0, then about an hour later, it went up to 100.4, so they piggy backed her with Tylenol. I kept praying over my baby and thankfully she was wide away the entire time I was with her! That was really special for me. =)

Being that it was Rotavirus, they highly encouraged us not to let Mercedes come visit, so Robert dropped me off at Mia's after church and he spent time with Cedes for the afternoon. It was just me and Mia in the room laying on the floor spending time together - occasionally watching Sprout (a cute TV station kind of like PBS), but mostly just looking at each other and talking and praying. =) She dozed off just once for about 2 minutes, but she was just so wide awake - which was wonderful!!

One HUGE accomplishment that Mia did yesterday (for the first time that I've seen) is she FINALLY got her thumb in her mouth!!! She's never been able to open her mouth wide enough to get her fingers in, but she's doing it now!! I've noticed that her tongue is also getting a lot stronger. It used to be so skinny and tiny, but she's working it more and it's getting fatter - like a normal looking tongue!! I'm so proud of her!!

Keep praying for her entire body - but one main thing is that her jaw will loosen up so she can one day use it to eat, etc. Especially since she's getting more teeth - having room for them to grow in would be very nice!!

I just called a bit ago to see how Mia's doing and her temps have been 97.? since around 9pm last night, no more loose stools since 4pm yesterday (she had about 9 in 12 hours). Mia's Co2's have been in the low 30's to 40's, so hopefully they can start weaning her back to her rate of 22bpm - they had to raise it to 26bpm Friday night.

Keep praying!

Christina and Kenny - thank you for the outfit you sent to Mia about a year ago - she's wearing one of the dresses in the picture above for the very first time!! It's adorable! =)

Rachael <3