Sorry it's been so long!

Hi everybody,

I feel like it's been forever since I last updated the blog! It's pretty crazy how thrown off you can get in such a short amount of time when you're not in your same home routine! Thankfully, Mercedes hasn't been too affected by the move. My sister rearranged her room so we could fit a toddler bed that we're borrowing from my brother, so Cedes has her own space which is good. =) My family has done a great job in clearing out some drawers, etc so Mercedes and I have a place to put our things in their teeny tiny home. =)

Three things that we've heard this week that Mia wouldn't/couldn't do...

1. That she has poor vision/doesn't have vision


2. That she failed her hearing test


3. That her vocal cords are paralyzed and will probably never talk

Mia CAN see ... I know she can!!! The nurse was basing her conclusion on what another nurse thought because Mia wasn't tracking at that particular time. Mia has tracked things before on several occasions. Her responses aren't like those of a "normal" 3 month old (yes, she's turning three months old on Monday... I can't believe it!!) - she's a little slower and responds in her own way when she can. When I hold her, she just gazes at her Mommy who loves her soo much! She'll look at our family Christmas picture that is taped to the inside of her bed, as well as a picture of Mercedes holding the soccer ball. She also likes looking at her pink toy that her three Sunrise nurses gave to her. In her swing, she likes looking at the lights that softly blink different colors ... my baby can see. =)

Last week, Mia got her hearing test done, but she was quite active during it. The gal doing the test said that it's normally done to newborns and they basically sleep all the time, anyway, so being that Mia's older (AND had just had an albuterol treatment which gets you all jittery), she couldn't finish the test because she was moving around too much. She didn't fail it - it was incompleted. She can hear, too. =) I remember when Karla and I were talking about whether or not Mia could hear, I was taking Mia's temp at the time and Mia jumped when the thermomitor beeped by her ear! I started laughing and said "Yep! She can hear!" Just yesterday, a nurse was opening a little box of formula for the baby next to Mia, and just the sound of the cardboard tearing, Mia jumped. =)

On Saturday night, Robert called the hospital to see how Mia was doing and the nurse put the phone to Mia's ear so Robert could talk to her. The nurse told Robert that Mia was acting very uncomfortable and was arching her back and wiggling her feet, but when Robert started talking, she stopped - until she took the phone away and then she started up again. Isn't that so touching?? Her Daddy's voice alone soothed her!

Mia is having a 2 hour hearing test tomorrow (Wednesday) at 1pm. They're going to sedate her a little bit so she's not so active and so that they can finish the test this time. =) Be praying!

Last week during the bronchoscopy, the doctor said that her vocal cords appeared to be paralyzed and that Mia may never talk because of that. Well ... on Sunday night, Mia's new primary nurse Linda was sitting Mia up and Mia started cooing!! Mom and I heard it (as we've thought we've heard for several weeks) and then we heard Linda say "Are you talking to me...?" Mia continued grunting for a while ... it was so sweet!!

There are two children who are getting ready to be discharged from The Children's Recovery Center and once a bed is available, Mia will be transfered there!! It'll be so nice to have her so much closer to San Jose - she'll only be about 5 miles away from my parents' home!! I do like driving, so Oakland isn't terrible, but it'll sure be nicer to not have to be on the road so much to see my baby! (Or to have to see a gas pump so frequently!) Keep praying for the insurance situation - that everything would be covered like they said it would be.

Since The CRC won't have a heated bed for Mia, they've put her back in a crib so she can get used to regulating her own temperature and so far she's been doing pretty good! Linda says she looks like she's camping in the dead of winter with all her blankets and gear, but she's keeping warm, so that's a good thing!! My poor baby has had bad luck with where her bed has been - she's always right under a vent!! She's back to wearing her clothes, too... and she's getting big!! I can't believe it! She's gained almost 4lbs to the ounce since birth and has grown somewhere around 3 - 3 1/2''... I love changing her diapers because you can see her little rollies... it's so cute! She was so skinny compared to Mercedes - Cedes was a rolly polly at birth!! =) Now Mia's getting rolly and Mercedes is thinning out! It's cute. =)

So... all this to say... nothing is impossible for God!! He's the one who created Mia (and all of us) ... He can create and do a miracle in her body! I believe that He can have her underdeveloped brain "catch up" so it's normal if that's what His will is. I am looking forward to the day that the four of us will be at home together enjoying each other!! I'm also looking forward to Mia being wire, tube, and cord-free!! One day!! =)

Blessings to you all,

Rachael

Please email (rachaeladamis@yahoo.com) me with your name and location if you're praying for Mia!

I've also added new pictures to my albums:

Traveling to CA

Our New Life In California

Pictures from Sunrise and Children's Hospital

I finally added pictures!!

To see them, go to this link...

http://www.facebook.com/album.php?aid=89832&id=614762171&l=3535d24e59

I've been trying to get pictures of people when they visit, but I haven't gotten pictures of everybody - I missed 3 people!

Many of you probably think we're too busy to talk if you called or visited, etc... we're actually not busy - we'd LOVE the company!! If you're able to visit, please do! If you want to talk to us, please call!

Keep in touch,
Rachael

Slideshow...

Hi again,

For whatever reason, I googled "Mia Adamis" and this came up... I've known that Mike Steelman put up a slide show, but I actually didn't know he asked people to pray for her. This is so touching!

Go to the following address to see a slideshow of Mia when she was 2 weeks old.

Mike, thank you so much for the beautiful pictures! Thank you, also, for asking people to lift my baby up in prayer!

http://mikesteelman.com/blog/?p=307

Flash is probably required for this...

Rachael

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...)

A quick update

Hi all, I just wanted to let you all know that we haven't forgotten to update the blog. We have been really busy these past couple of days and we are still working to figure out a schedule.

Mia has been doing very well at Children's Oakland so far. In fact, they have started to reduce the breaths per minute from the 22 that it was yesterday down to 10 early this morning. This is the lowest that she has every been! She has been very good at keeping her breathing rate in the 30s and 40s so far and her blood CO2 gases have been in the 30s and low 40s. Overall the doctors seem to be pretty happy with her progress but at this time it is still unclear of how low of ventilator settings she can go. The doctor said that she is already at very minimal settings as it is and that is a good thing, but we don't know if they intend to try to wean her off completely while in the hospital or if they will leave it for the recovery center.

With that said, they did do some probing in her mouth and throat this morning. We haven't gotten the full details on the results but the doctors did indicate that Mia either has some swelling or some very small passageways in her mouth. The doctor thinks that Mia might actually need to have the trache in for a long time because of these issues. Tomorrow we are going to be having a family meeting with the doctors to develop a game plan for her and we are hoping that they will be able to give us a detailed explanation of what they found during the probing.

Other than that, Mia has been doing very well. She is looking around a lot and I'm sure she gets an earful from the busy NICU to listen to. Her body temps have been somewhat erratic but the nurses have found that as long as she is bundled up a little she seems to maintain her temperatures. Rachael and I have been trying to find a preemie pacifier for Mia like we had at Sunrise Children's but so far Oakland hasn't been able to find anything small enough. We are hoping that someone will be able to find something small enough that we can use to stimulate Mia's mouth.

An update on the nurses is that we have been very happy with all of them so far. Of course, they are no Karla, Patricia or Jessica but in their own way they have been good to us. Since the NICU is much smaller here and a lot busier it's a little harder to develop that good relationship with the staff like we got to do with Sunrise.

So one exciting thing that Rachael and I got to do today was to start house hunting! We found out that real-estate market in the Beale AFB area is a little more complicated then we initially thought it would be. Our initial price range was giving us some pretty bad fixer-uppers so we had to go back and re-evaluate what we were looking for. As a result we found one house that we think meets all of our needs including a good working area for Rachael's sewing business as well as a place for my wood working tools. The price of the house is a little higher then we wanted but it is almost 2500 square feet. The ironic thing for us is we have always been wanting to get a bigger house but now that we are looking at these large houses we realize that some of them are so impracticable for us because we don't have the furniture to fill the house. Oh well...

Well, some things to continue to pray for are as follows:

• Mia... Of course! Specifically for her jaw and facial muscles. The doctors and nurses think that her face is still pretty tight and are considering some options that might loosen things up.
• Continued Vent Weaning.
• Meeting with the Doctors tomorrow at 1pm.
• Opening at the Children's Recovery Center and the timing and insurance issues that need to be worked out.
• House hunting and job transition.

Thanks again for all of your prayers and support. Last night I got the chance to read some of the e-mails from people telling us that they are praying for Mia. It is so moving and humbling to know that so many people are bringing Mia and our family before the Lord in thoughts and prayer. We wish we could thank all of you in person...

If you haven't done so already, if you are a regular follower of Mia we would like to know who you are and where you are (just first name and city is fine) please e-mail it to rachaeladamis@yahoo.com. Rachael and I want to put together a scrapbook for Mia and a map so that someday she can get an idea of just how blessed she is to have so many people praying for her.

Thanks again, we will try to put up some more pictures of Mia and her new digs in the morning.

Robert

More Updates From the Bay

Hi All, sorry for the lack of updates in the past couple of days. It's been pretty hectic going back and forth to the hospital.

So far Mia has been pretty good. Yesterday she did have a little bit of a rough day in the afternoon and early evening. For whatever reason she looked very uncomfortable and kept on arching her back a lot. Her lower body was cool and clammy while her head was very hot to the touch. Her body temperature showed her a little on the cool side but she acted like she was over heating. Her breathing was also a much different pattern then we had seen before. She would take two short breaths and then one deep breath that she would hold for almost a second. The nurses and respiratory therapist didn't think much about it but we told them that she has never breathed in that manner before. The one thing that Rachael did manage to put together was that they put Mia on Albuterol for her lungs (her right lung is a little collapsed). We are wondering if that was causing the increased agitation in Mia. The nurse said that she would mention it to the Doctors and see what they thought.

So, the good news is that Mia's breathing has been much more consistent. For the most part she has been initiating all of her breaths while on the ventilator. There has only been a few times where she rides the vent for a few seconds or so. We are happy to see this progression but we really would like to know what caused the dramatic change.

So on the logistics side of things Rachael and I working out a game plan for being at Oakland for a couple of weeks. The one thing we have figured out is this is going to be very taxing on us. We are doing what we can to make things easier - Robert's aunt and cousin both offered their home for us to stay at whenever we don't want to drive all the way down to San Jose, so we've taken them up on the offer. We also just found out that our insurance company does have a program to help with situations like ours where we are a long ways from home and have a lot of travel expenses. It sounds like if we qualify that we will get a lot of the expenses for driving, parking tolls, and food covered which will be a huge relief for us. We will be sending in the paperwork on Monday and hopefully will find out if we qualify in about a week or so. We're praying that we do! If we don't, we know God will provide.

Robert's aunt mentioned that some classes from her school reads Mia's blog every morning, so that got us thinking... if you've ever read the blog and have prayed for Mia, we'd love to know! This would be an amazing thing for her to know when she's older that so many people all around the world prayed for her life and healing. We encourage you to participate.
Email Rachael with:

• Each name of the person praying for Mia
• Location (City, State, Country)
• Age (if they're kids under 15)
• Email the infomation to rachaeladamis@yahoo.com

We did visit Children's Recovery Center on Thursday and got a tour of it and it looks very good! We were able to talk with the lady I've been on contact with for the past 4 weeks and found out that the bed they were holding for Mia was filled, but that there should be a bed available in the next couple of weeks. Mia is next on the list!! Oakland will care for Mia until the bed is available. We're looking forward to only having to drive about 8 minutes vs over an hour to see our baby girl!!

Keep praying for Mia's healing!

Robert and Rachael Adamis

We're in Oakland ...

We made it safely to Oakland! Mia and I went by and air ambulance and Robert, Betsy and Mercedes arrived about 4 hours later. We all had great travels, a bit of trouble with wind for both of us, but other than that, it was great!

The NICU here at The Children's Hospital is completely different than Sunrise. We were QUITE spoiled there and just didn't realize it! I told Robert that it's kind of like we were at the Ritz-Carlton the past 10 weeks and now we're back to real life. =) I really need to get used to that aspect of it. It's a much older hospital, so things are much more crowded and just a whole different set up. The nurses work in 8 hour shifts here, so that's also something we're going to need to get used to! The nurse we had today was good, but quiet. Everyone is mostly trying to get caught up on Mia and just asking us a lot of questions.

One of the doctors talked with us, asked a lot of questions and took a lot of notes, examined Mia, etc. Tomorrow she will be getting another EEG, as well as being seen by a neurologist, polmonologist, and possibly a cardiologist. Very soon she'll also be seen by a genetisist, so that may provide some answers!

The doctor said that they work with Children's Recovery Center all the time, so we're glad to hear that! Hopefully we'll be able to get Mia there soon - it would be so much more conveniant! The commute to Oakland is going to get very expensive VERY quickly - especially since you also have to pay for parking! It took Robert and I about 1 hour and 15 minutes to get from the hospital to my parents' home without any traffic. We're praying Mia won't require to be in the NICU very long, but of course, we can't really control that. =)

I am exhausted - I only got 3 1/2 hours of sleep last night! I need some rest now, but I'll try to post pictures of Mia's journey to CA very soon.

Thank you for your prayers!

Blessings,
Rachael <3

What a surprise!

Hi everybody,

Okay... this is going to be a short update because I'm very tired and it's already midnight and I have to get up very early tomorrow!!

After waiting around all morning (the day wasn't lost - I washed clothes and repacked!), we finally heard that the insurance company was going to use their air transport team, so they were being "rounded up" and needed to make sure they had all the right equipment Mia needs. They were waiting to get a ventilator, so, obviously, we didn't leave today. Apparently they have what they need now, so they will be picking Mia up at 9:30am.... and guess what! I'm able to go with her!!! They said that one of us (me or Robert) could go with them and since Robert has really bad motion sickness, I happily volunteered! I'm soo glad she didn't leave today because it was soo windy!! The forecast shows that the winds should die down around 5am, so hopefully the weather will be nice to us - especially since we'll be in a small plane! Pray for us ... I really don't feel like getting sick, but I also don't want to miss this opportunity to go WITH my baby girl!

We're so excited that we are FINALLY getting back home to California, but on my way home from the hospital this evening, it really hit me that I'm leaving all my dear friends here. I've been able to say "see you later" to most of them, but I thought I'd be able to see my sweet Amber again. I went to her house on my way home because I needed to say bbye, but apparently she wasn't home at the time. I knew they were out of town a few days ago, so I thought I'd drop by just in case they were home. Hopefully I'll be back in a few months so we can finally go out just the two of us, Amber!! (Or maybe the three of us if you have your sweet baby by then!) I love you!

Dr. Piroozi has been amazing during our 10 weeks at the NICU at Sunrise, as well as our dear Patricia, Karla and Jessica. You've all set the bar really high... we're praying that Mia will have doctors and nurses who are just as sweet, caring and thorough at Oakland as you all have been for our darling Mia! We're going to miss you all so much!!

To our friends in CA, please visit!! Can't wait to see you all again ... and for you to meet our baby Mia Amore! =)

Excited,
Rachael <3

No more games ...

Hi all,

We heard back from Renee and she said that, basically, there's nothing they can do about getting us out of Oakland, so, if Stanford fell through, that's where we would be going. She said she called Stanford, but hadn't heard back, so we didn't know what the plan was, so we went about our day.

Betsy and I went to visit with Mia today and I was able to do her cares (clean the trach site, take her temp, change her diaper, clean her mouth and eyes, suction her mouth, etc) and I also was able to change her trach all by myself!! When they offered that I did it, I jumped at the chance because I want to be able to take care of my baby, but when it was time to actually change it, I was starting to get a tad nervous. Patricia guided me through it all and there were 3 other nurses standing by, mostly because they had never seen a trach-change before (they said there are usually only 3 around trach babies a year!), so if anything went wrong, there was plenty of help at hand. =) Once I got the trach changed, then my insides went cold and I got really nervous, but excited that I did it! =) That was exciting. =)

Ingrid, the social worker at the hospital, called Stanford, but the gal who said they'd reconsider was gone for the day, so we'd have to call back in the morning. I called Robert to let him know and we both decided we were tired of playing games with Stanford - so Oakland, here we come!!

There are just a few things that need to be gone over - papers to be signed and such - and then everything should be good to go tomorrow morning, so, Lord willing, Mia will be getting transported tomorrow! =) It's finally happening!!! Even though it's Oakland (and a heck of a commute!), we'll be so much closer to family ... and hopefully we won't be there very long! =)

We'll update when we know exactly when we're leaving. I don't think Oakland will be changing their mind on us like Stanford did, so I think we're safe in that regard. =)

One day closer,
Rachael <3

Of all places!!

Oh my goodness, this has been a crazy week!! After going through all of the approved hospitals in a 30 mile radius of my parents' home (there were alot!), the few hospitals with NICU's couldn't take Mia because they didn't have the care that she requires (because of the trach/ventilator), then we heard that Stanford was reconsidering for the second time.

Yesterday we found out that, for whatever reason, we HAD to approach Oakland Children's Hospital. We were all hoping and praying that they would deny Mia because of the distance and the town! I had asked Dr. Piroozi, as a joke, if when we called that he made Mia sound as bad as possible so they wouldn't want her! He said he had already thought of that, but then he thought that it might make them accept her even more. So, he decided that he'd call on Sunday morning (a weekend and holiday) hoping that they'd say no.... and, of course... they said they'd accept her!!! =/ We really don't want to have to make that commute everyday - especially to Oakland, but one of the nurses that was there today used to work at Oakland Children's and he was telling us what areas to avoid and that the hospital itself isn't in a bad area, at least that's good!!

Robert's going to call Renee, the Tricare case manager, in the morning to see if we can get out of going to Oakland because it's 47 miles away and with Bay Area traffic, it will make for a very long drive everyday!! If we can get out of it, and if Stanford also says no for the 3rd time, then we can choose to go to Valley Medical where they've already accepted her and the insurance would have no choice but to fully cover it. Of course, we don't want to "burn bridges" with the case manager since we'll be working with her for the long haul, so we'll take Oakland if trying to get out of it will cause more problems. Tonight, the charge nurse wanted us to sign the consent forms to get Mia transported and I believe it would happen as soon as tomorrow! Depending on if we do get out of going to Oakland, we may actually be taking off tomorrow or Tuesday! =) If this is where God wants us, then that's where we're going to be!

Today was good - we got a really late start in the day because we slept in, but got out the door in time to go to our church service/pot luck/egg hunt in the afternoon! It was great seeing everybody again, possibly one last time, before moving! It was funny, Chaplain Suh came up to me and asked how we like the new place! I looked at him and said "what new place?" He thought we moved already!! I told him that if we had moved, we wouldn't be here!! He laughed and said that he thought maybe we came back for the weekend. haha No, we wouldn't be coming back to Vegas just for a weekend!! =)

Mia's doing well - Jessica thought she saw some seizure activity last night, though, because she had never seen Mia act that certain way before, but we don't know for sure. Jessica said that Mia was awake from midnight until 8am, though!! That explains why she was asleep all day!! Oh well... she's still beautiful when she's sleeping! =)

Well I must get some sleep now... hopefully these hiccups will go away soon!!

Continue praying for our family! We'll keep you posted as soon as we hear where and when we're going! =)

Happy Resurrection Day!

Rachael <3

And... Back to Stanford... We Think...

Well, there are all sorts of curves and twists for us today but hopefully we have made a significant step forward. Today, Mia was officially assigned a Case Worker from our insurance company. Her name is Renee and I got the chance to speak with her about Mia's needs and trying to get her transferred to California. Renee listened very intently and asked a lot of questions and then said that she would start working to see what she could do.

After talking with Renee, I started to call some of the other hospitals that we know accept our insurance company to see if they had facilities that could handle Mia. I spoke with a lady named Kim that works at Dominican Hospital in Santa Cruz and explained the situation and that we had tried for Stanford but Stanford had denied Mia. She explained that Dominican was actually a sister hospital of Stanford and that they work really closely together. I was thinking to myself, oh great, the one other hospital in the bay area that can take Mia and she will probably get denied by the same doctors that denied her at Stanford itself... Kim asked a lot of questions and said that she would look into seeing if she can pull some strings for us.

Later in the day we heard back from Kim who explained to us that she had found out that Stanford had denied Mia because they were of the understanding that TriCare would not fully cover the hospital. Kim then contacted Renee the case manager at TriCare and explained this to her at which point Renee was very surprised and said that was not correct and that TriCare would cover all of Stanford. Armed with this little bit of knowledge, Renee and Kim combined are going to try to get the mess straightened out on Monday and get Stanford on the right page.

So... in essence we are back to working on Stanford. IF they fall through for a third time (knock on wood), our insurance company said that since there are no other options in the San Jose area that we can then look for an out of network provider. In that case, then Mia can go to the Santa Clara Valley Medical Center (that has already accepted her) and we don't have to worry about insurance not paying.

Mia, on the other hand, is doing really good. She is getting a lot more stimulation with different things now, including her swing, bouncy seat and toys! It's fun to watch her look at the different lights and colors and I'm sure she is enjoying looking at something other than a white ceiling. We really can't wait for her to get more tummy time and have more physical therapy. (In photo: Mia enjoying her toy from her primary nurses Patricia, Karla and Jessica. Thank you so much, ladies!! She LOVES looking at it and listening to the music!)

On a different note, Rachael had Mercedes blow her nose yesterday and then she started crying and said her ears hurt, so we got an appointment for Mercedes for today and found out that she has a mild double ear infection. So she is on some antibiotics to clear that up. Please pray that she will get over it quickly. Other than that, she's been her usual cheerful self!

Well, that is about all we know right now. It doesn't look like we will hear anything until Monday but we are hoping that once we get the go ahead then we might be out of here on Tuesday or Wednesday. Thanks again for all of your thoughts and prayers.

Robert

The drama continues....

Talk about a roller coaster ride!! One day we're all packed and ready to go, just waiting for the phone call... then we hear some crazy story from Stanford, basically making up excuses to not accept Mia. Apparently one doctor wanted to accept her, but the rest of the team didn't want to take her. This morning, they officially denied her.

Today, more calls were made to the other hospitals. O'Connor can't accept Mia (because of the ventilator, I believe), but their sister hospital will accept her at Valley Medical Center. Valley Med wasn't on our list of approved hospitals, so now we're waiting to see if it will be covered by our insurance.

We also heard today that Children's Recovery Center will not be covered no matter what!! Oh the drama!! The insurance person is saying that they will only cover an acute facility (NICU), then Mia will either need to go home or go to a "nursing home" for children. I believe there is a secondary insurance for special needs' people with our insurance, so we might look into that and see if there will be more options for Mia.

On another note, Robert and I have been having fun looking at houses online that are for sale!! It's going to be fun looking for another house especially because we know what works and what doesn't for our family. There are several out there that we really like, so whenever we get to CA, we're hopefully going to hook up with the realtor and check some out! =)

Mia is doing really good - so much more alert and she's focusing much more on objects! She's been getting physical therapy everyday and is getting a lot stronger. =)

Continue praying for us, especially with this whole insurance deal. It's been so crazy these past 2 weeks that it's almost amusing whenever we hear what the latest is!

We all really want to be with our families for Easter, but of course, it wasn't a plan to begin with... if it happens, it'll be a bonus! =)

Looking up,
Rachael <3

Another twist in the "plans"...

Hi Everybody,

It's sooo close!! It's getting harder everyday because we know we're that much closer... but it also keeps getting further away! Yesterday we found out that Mia will be moved today and that we just had to wait for the phone call this morning so we knew what the plan was. Mia's nurse, Karla, called this morning let us know that apparently several babies were born yesterday at Stanford, so 39 of the 40 beds are full! You'd think it would be "There's a bed available - just for Mia!", but that's not the case. They would like there to be around 3 beds available before they take her there this way there's room for more babies. Apparently she'll be sent to the NICU, not the PICU. I don't understand what's going on, but I know that I don't have to! It IS being taken care of, we just need to be patient. =)

So, it may be tomorrow, may be 3 more days... we won't know until we get the phone call. =) I told Betsy that this is like waiting for the rapture to happen!! We don't know when, we just need to be ready!

Just wanted to update you all!

Waiting patiently,
Rachael

Stanford here we come! (This time for real!)

Hi Everybody,

Dr. Piroozi called Stanford/Lucile Packard's PICU yesterday and they accepted Mia! I mentioned in a previous blog that now that Mia is over 60 days old, she's qualified to go to a PICU (pediatrics) rather than stay in a NICU (neonatal).

We haven't heard exactly when she'll be leaving, but it will most likely be today or tomorrow. If that's the case, Robert, Betsy, Mercedes and I will drive out to San Jose today!

To our Vegas friends, whenever you're in the bay area, please come visit!!

To our friends in the bay area, please visit when we're there!! =)

Thank you for your prayers! Continue doing so!

Love you,
Rachael

(Mia getting some physical therapy with nurse Patricia. She's getting a lot stronger!)

Exciting things for our 2 month old!!

Hi Everyone!

Can you believe our baby girl is already 2 months old?? It's so hard for me to believe - especially since she hasn't really had a normal life these 8 weeks. To me, if feels like it's only been around 2 weeks since her birth, although Robert says he feels all the 8 weeks.

Big things happened this week for Mia! One of her primary nurses, Patricia, hadn't taken care of her for around two weeks, so on her first day back taking care of Mia, she made things happen for the better! Mia is now in an open crib like a big girl and has a bouncy seat as well as a swing from home! When I found out what Patricia had done for Mia, I started crying because I was so happy!! My poor baby had basically only been on her back all this time, so we are so happy for this change! She's a big girl now and we need to treat her like the 2 month old she is! =) Her muscles are very weak, but I think it's mostly because she hasn't been challenged like most babies are on a daily basis. Pray we'll be able to exercise her the way she needs to be so she'll get stronger.

Yesterday was great - the night before, my brother found out that he had a layover in Vegas for 2 hours, so I was able to pick him up from the airport and take him to the hospital and we were able to visit with Mia for about 25 minutes before needing to head back to the airport for his connecting flight to New Orleans. (His school is doing a missions trip to help a parish that has been helping rebuild for Katrina victims. Now the school is going to help the parish rebuild their own facility!) It was a great surprise to hear about the layover and even better that I was able to see my brother again! I was a little worried that it wouldn't work out because I was stuck in ridiculous traffic for 35 minutes and only went about 5 miles, and he arrived 15 minutes early!! Once the traffic cleared up, though, I got to the airport at 9am - right when I was planning on getting there! It worked out perfectly. =)

Mia is doing well - very stable, with the exception of an occasional desaturation and brief drop in her heart rate. We're going to try again starting Monday to find a hospital that will accept her. Now that she's over 60 days old, she's able to be transfered to a PICU (pediatrics ICU) which they think may be easier than transferring to a NICU (neonatal ICU). Some of you have asked which hospitals our insurance company will cover - they're Stanford, Lucile Packard Children's, Dominican, O'Connor, and Regional. Dr. Miller says that he thinks Mia should be able to be moved sometime this coming week. Keep praying for God's will!! =)

If you want to visit Mia, I encourage you to come as soon as you can, because we may not be here for much longer!! You're not a bother in anyway - we WANT visitors! (As long as you're healthy, of course) I gave the rules in a very early blog, but just as a reminder, no kids are allowed in the ICU unless they're over 15. If you've visited Mia before, she's not in the same pod she was in (they moved the babies so they could clean it). She's now in pod 3. E-mail me or give us a call so we can arrange the visit. Please visit!!

Have a great Sunday!

Always, Rachael

Tentative plans on hold...

Hi Everybody,

This week has been filled with ups and downs... it's hard saying bye to friends when you have no idea when you're actually leaving, only to see them again and have to say bye all over again!!


Monday we found out that Mia was going to be transferred to Stanford only to find out the following day that they denied her. Tuesday and Wednesday were spend trying to clear up the miscommunication and misunderstanding, but as of last night the social worker told us that she's 99% sure that they truly denied Mia. So we're back at square 1. Today is a new day, so we're going to contact other NICUs our insurance company will cover to see if they have a bed available and will be willing to bring Mia to their hospital.


We realize that if it's taking so much effort on everybody to make something happen, it isn't meant to be - and we only want to go where God wants us!


Yesterday, Mia had a rough morning. After a trach suction, her oxygen level dropped to the 30's again, so they had to bag her back up, then once they got her stable, her heart rate dropped to the 60's/70's and they had to do an emergency trach change on her. They believe they saw more seizure activity, so they gave her a dose of phenobarbitol, raised her vent settings a little bit, and she knocked out for a couple hours. She was riding the vent quite a bit yesterday, but there were also long stretches when she was breathing all on her own. Keep praying that God will heal her from these seizures!!!


The doctors analysed the continuous EKG they did on her and it's some sort of arrhythmia, but it's not one that's treated. Apparently it's not that much cause of worry. They think that maybe it's a central line that is tickling something causing the heart to have a different rhythm. I don't know if I got that exactly right, but it was something to that effect!!


There are 5 other hospitals on the list that our insurance gave us that they'll cover, so hopefully Mia will be accepted into one of their NICUs. I'll see if the case manager at the hospital will be able to contact them today so we know what we're doing!


I'll attach some pictures of Mia (upright for the first time - exciting stuff!) and some of Mercedes and her best buddy, Noel Dulay! We had to go to the park at least one more time together. =)


Keep us in your prayers - especially for God's will to be done in the transfer, and also that Mia will be healed of these seizures!

Blessed,
Rachael