The Adamis Family Christmas Newsletter

Our Second Beautiful Daughter Was Born!

Mia Amore Adamis entered this world on February 4, 2009 at 1:02pm.

She weighed 5 lbs 12 oz and was 18 7/8'' long.

As many of you know, her birth has changed our lives drastically!! Mia was born only 2 ½ weeks early, but her challenges are many. She was born having seizures and also was not breathing. She is 100% ventilator dependent and hasn't been able to make too much progress on weaning off the machine, but she has progressed greatly in other areas, though! =) She's is able to “talk” above her trach and she loves batting at her toys hanging from her toy bar as she sits in her bean bag. She loves when Mommy kisses her all over! She loves looking at herself in the mirror and loves staring at her hands and grabbing her nose. =) She is such a joy to everyone around her – especially her family! She has stolen so many hearts. She's now a chunky 10 ½ month old who is getting stronger daily! Continue praying for a miracle in her body! Doctors still haven't been able to diagnose her, but we are trusting her Creator with her life as we care for this precious child He blessed us with!

This year has been full of challenges. Mia was born in Las Vegas and was there at the Sunrise Children's Hospital NICU until April 15^th when she was taken by air ambulance to Children's Hospital Oakland NICU for 6 weeks. On May 26^th, she was moved to Children's Recovery Center in Campbell, CA (just outside of San Jose) where she now resides. During that time, Robert was still working in Las Vegas until he got his new job working at Sacramento State University teaching Air Force ROTC in September.

Ever since Mia was taken to Oakland, Mercedes (3 ½ years old) and I have lived with my family in San Jose to be near our baby. Having Robert in Sacramento has been so nice! He comes down every weekend so we can spend time together and Mercedes and I will be going up to Sacramento one week out of the month to spend as much time with the three of us in our new home we purchased in October. We want to provide Mercedes with as much normalcy as possible, which can be difficult in our family situation.

We are so grateful God blessed us with Mercedes Faith as our first born daughter!! She is the most easy going child and just goes with the flow! During these last 10 ½ months of always being at the hospital and having somebody watch her at some point in the day, she has only had a melt down about 3 times where she didn't want us to leave. She is so sweet; goofy; caring; crazy; thoughtful; kind; fun; and the list goes on and on. She is so kind with our big 9 month old kitty Willow and always loves playing with him and giving him hugs and kisses! Just when I don't think my love for her can get any deeper... somehow, it grows!! I can't get enough of my beautiful girls! =)

Robert and I are doing very well considering these stressful times. God has definitely shown Himself faithful and we are always willing to receive His blessings He has for us! A lot of times you hear that when health problems arise with children, there's a lot of arguing that goes on with the parents. Even though we dealt with so much sadness and uncertainty of our daughter's condition, God always gave us such peace and our decisions were always unified. God has brought us closer and now our relationship has strengthened greatly! Don't get me wrong – we're still only human and at times it's extremely hard to not know what the near future holds for Mia, but we just need to remind ourselves to rely on God and to fully trust Him in every area of our lives.

For updates on Mia and our family regularly, visit our family blog at: www.TheAdamisFamily.blogspot.com

Merry Christmas and have a wonderful 2010! Keep our family in your prayers. =)

Love,

Robert, Rachael, Mercedes Faith and Mia Amore Adamis

A Very Merry Christmas!

Merry Christmas, Everybody!

It's been a couple of days since I last updated... and I do have a good update! =)

The transport from PICU to CRC was a little stressful. Thankfully Sheila, an RT from CRC, came to the PICU to make sure the vent settings were just right. The vents the paramedics use are a different model than what CRC uses, so they couldn't get the settings exactly right, so Mia was getting upset and started to desat, so once they got her as stable as possible, they rushed her over to CRC to finally be home. Boy was it a relief to be back!! This is the first time I've felt that CRC is actually Mia's home. It was so good to be back! It was so good to have Jay be there to get her settings just right. She had a rough time the first hour or so that she was there just because she had to recover from the vent settings not being correct.

The really strange thing is that the majority of the time while in the PICU, Mia's settings were REALLY high. She was requiring 35% oxygen (almost 4 liters). Jay came to visit on Tuesday and he was curious of all her settings and co2 and such... and we were both wondering why her settings were so high and she wasn't satting really low. She was always hanging around 90%-96% oxygen saturation. On 35% oxygen, you'd think she'd be satting at 100%.

When she was all settled in, she got a bath, and totally knocked out! Jay set her on a high-flow oxygen set at 100%. Then they were able to lower it to 40%, then 35% and satting 100% within about an hour of her being back. That was exciting to me!

By the next shift, her c02 was great - right where they should be AND Jay was able to wean her down to only 1 liter (25%) of oxygen and she was between 99%/100%!

In the middle of the night, Mia's co2 was too LOW!! haha So, in order to get her co2 higher, guess what the RT had to do? Yup, wean her breath rate on the vent!!! Isn't this great?? =) Her settings are so much better now and her breath rate is now 30 bpm and in the PICU it was 40 bpm. Mia is doing great at between 1/2 to 1 liter of oxygen and her co2 is remaining in the low 30's - right where it should be! Praise the Lord!! =)

It's confusing us to why Mia was requiring so much of everything while in the PICU. We're thinking something was set quite right, but of course, there's no way of knowing now.

Merry Christmas to you all!!

CT Scan and update...

Hi Everybody,

Thank you so much for praying for Mia and our family.... I feel like I always ask for prayer... but get used to it!!! Pray like crazy for Mia's healing! She's improved greatly - except for the respiratory area. She's made some small improvements, but Dr. Silva and the RT's are very concerned about her lungs. They're very stiff and are requiring a lot of pressure to inflate her lungs. Dr. Silva is worried that that with so much pressure, the little "balloons" inside the lungs will get damaged very quickly. There isn't any type of medicine or procedure that they can do to cause fast new growth, so they're worried that they'll be getting damaged faster than new growth will happen.

Here are the images from Mia's CT scan of her brain. The LEFT images are of a child around Mia's age. The images on the RIGHT are of Mia's brain. You can see the vast difference.

The grey is brain. The black is water. The white is skull.

Dr. Silva says it's not really Hydrocephalus because the surgery for that (the shunt in the head to drain the fluid) won't do much because there's so little brain that even if they drained the water, it'd just fill up the empty space again.

At first the images really scared me - which is why I haven't written about it until now, but God can do anything!!! He can replace any cell in her body. I have been praying since Mia's birth that whatever cells are missing, that if it's God's will, He will replace them.

What gets me is that with the smaller percentage of brain that Mia does have, she has come so far in her development!!! How much brain do we actually use anyway?? =)

So.... this does give us a much better way to pray now that we have a better picture of what's going on inside Mia's body.

1. Pray for Mia's lungs so she doesn't require as much pressure from the vent. Ultimately to be weaned from the ventilator.
2. Pray for Mia's brain that God would cause it to grow.
3. Mia's c02 to be stabilized.
4. Mia's surgery the day after her birthday - February 5, 2010 - to put the tubes in her ears.

Mia's been getting tummy time that she has been enjoying! It's definitely something I'll be doing more of at CRC! =) Doesn't she look cozy?

Have a Merry Christmas! =)

Sorry for not updating the blog! =)

Hi Everybody,

I've been doing short updates in my Facebook status, but I haven't put enough effort into actually setting up my laptop and taking the time to write an update on here.

Mia is doing better, which is wonderful! God knew she needed to be here. I had planned on going up to Sacramento with Mercedes this past Wednesday so Robert and I could work on Christmas gifts, then we'd all come back down today, but seeing that Mia wasn't doing too great last Sunday, I called him and told him not to count on me going up to our home because I had a feeling Mia was going to be sent out to the PICU this week. Two days later, she was. And I'm glad she was! She needed the extra care, the quiet, the rest, maybe not all the crazy poking, but... =/ I needed the break, too. On Sunday night, I was getting pretty stressed out. I told Robert I wish I could just go away from everything for a week. On Monday, I needed to get away, so I went to visit Mia for about an hour and a half, then I went Christmas shopping for the girls, then I took myself out for lunch. I don't think I've never really done that. It was nice that I wasn't in a rush to go anywhere... just having a slow lunch alone while reading a book - another thing I haven't done in a long time!! I have so many books I want to read, I just haven't found the time to do it yet!

Anyway... coming to the PICU is also what I needed. Knowing that I need to be with Mia and that I'm not worried about needing to rush back to Mercedes has relieved stress right there. My parents never tell me when I need to be back, I just want to be respectful of their time and want to give them their own time to do whatever they need to do. It's been nice having the break and just being able to rest here in the super quiet PICU with Mia. =)

About Mia:
Wednesday Tuesday night and Wednesday were super crazy for my poor baby girl! Dr. Smyklo really wanted to get a PICC Line in Mia, so a team came to Mia's bed on Tuesday night and poked her multiple times in both feet, legs, and her right arm trying to get the PICC in - for a little over an hour. Of course, Mia was on morphine, sedated and also paralyzed so she wouldn't move. But they still couldn't get it and they didn't want to poke her again.

Wednesday morning, Dr. Smyklo decided just to try to get a central line in, so they did the same drug routine to knock Mia out, then tried... for an hour and a half. She did get an artery line so they don't have to poke her every time they need blood, so at least that's good. =) She wasn't able to get the central line, though. A few hours later, they sent Mia down to Radiology so they could use their lighting so they could see her veins and they tried to get the PICC line in her left arm. They used contrast dye so they could see her veins better, too, and after poking her about 4 different times in her arm, they couldn't feed the PICC past her shoulder, so she never got a PICC or Central line because her veins were too tiny and didn't have one that was straight enough. While she was down in Radiology, though, they did get the CT Scan of her brain. I'll post those images in the next blog and tell a little more about it then. (Above pictures are of Mia in Radiology.)

Wednesday, after all that poking, Mia was really uncomfortable, so they sedated her just so she could relax and rest. She hasn't needed any pain medicine at all since Thursday, so that's good! =)

Dr. Silva's rotation started in the PICU now, so he's her Dr. here for the weekend. He had said she was good enough to go back yesterday, but I didn't like that idea. Brooke, Leslie and Amy (CRC nurses) came to visit on Thursday and they agreed with me and encouraged me to tell Dr. Silva that I didn't want her to leave until Monday. With all the kids just getting over the fevers that were going around at CRC, Mia definitely needs to rest here in the PICU where it's quiet.. and where there are only two patients - herself included. I think Dr. Silva is going to let us stay. He hasn't said anything otherwise. =) I went to CRC yesterday to get some socks for Mia and I talked to Jay and Audrey (both RT's) and told them of her vent settings here in the PICU and Jay doesn't want her back on how high of settings she's on! So, I know he won't let Dr. Silva bring her back until Monday either. =)

Mia has had lots of visitors, which has been wonderful! Right now it's only parents and grandparents who can visit at CRC, but as long as you're over 14 and healthy, anybody can visit at the PICU. Her extended family, especially, has loved that Mia's in the PICU so they can finally visit! =)

That's about it!

I'll keep you all posted...

Rachael <3

Some news...

Hi Everybody,

Mia's doing alright... she's really sleepy and slowly getting swollen and puffy, but she's doing alright. Her co2 has definitely come down - it's hanging around in the 30's-40's, which is great. Her vent settings are really high, though, and it's requiring a lot more oxygen. I think she's set to 45% oxygen. At CRC the most she was needing was 28%.

Dr. Smyklo did tell me just now that Mia has a little bit of pneumonia in both lungs. It's nice to know that she was getting sick all this time, although we're not sure exactly if that's the reason why her co2 has been hard to control, as well as her having seizures much more frequently. She's had possibly 5 in the past week or so.

I never got a chance to write about Mia's appointment to Stanford last week. The appointment was okay - of course, again, there was miscommunication. The doctor knew nothing about Mia, or why she was there... anyway.... all in all, I think it will be beneficial. I'm so glad RT Jay came along because between he and I, we were able to answer about 98% of her questions. =)

Dr. Witcoff, the Pulmonologist at Lucile Packard Children's Hospital (Stanford), has a few ideas. The main one that I think could be beneficial is Mia could be admitted to LPCH and during her time there, have tests done while the Dr. observes her. That was her idea - we're not even sure if Dr. Silva (Mia's primary doc) will go for that. We'll see what the two doctors decide. They should be in touch sometime this week.

=========

I had to leave the room because Dr. Smyklo was going to attempt the central IV on Mia. I was in the hallway for close to two hours, I think, and finally they came out. I was reading a book, so I wasn't too stressed out. =) One good thing is that they were able to get an IV in an artery, so now they don't have to poke her all the time when they need blood work. The bad news is that they kept getting the artery on the other side - they needed a vein. Mia's so chunky (and now swollen) that they can't find her vein, so Mia will have to go downstairs to Radiology so they can use their lighting to get the actual PICC line in. While she's down in Radiology, she's going to get her CT scan of her brain as well.

Mia's doing alright - very sleepy and swollen. I'll post a picture of her. She all of a sudden looks like such a big girl! This is the first time she looks like a child, not like a baby! I can't believe how big she's getting. =) Of course, it's probably the swelling that is making her look a little bit older, but I still can't believe she'll be a year old in about 6 weeks!!

I'll keep you posted,
Rachael <3

Mia is stable in the PICU....

Hi Everybody,

After 11 days of trying to get her co2 under control, they finally said enough is enough... this morning, after a scheduled breathing treatment, Mia's co2 reached an all-time high of 99. I had only been with her maybe 5 minutes before they said they were going to call Dr. Silva to see what he wanted them to do. When I first got there, the charge nurse basically warned me that things weren't going the greatest this morning, so I kinda knew what I was walking into when I went to her room.

Dr. Silva didn't want to wait any longer, so they called 911 and within about 6 minutes, we heard the sirens and they were in her room in no time! Being that they called 911, the fire department showed up as well. There was quite the crew in her bedroom!! The fire dept. was cleared to leave, but they still hung around until Mia was in the ambulance. Jay, our fabulous RT, bagged Mia the whole trip over (only 5 minutes) to the ER. In other words, she wasn't on the vent - he was giving her manual breaths with the "bag".

While in the ER, Dr. Silva met up with us, Jay and Dr. Smyklo who is also taking care of her here at Good Sam. They decided they wanted to order chest xrays, lots of blood work, and a CT scan of Mia's brain. They were going to do a central IV in Mia's leg, but they're not going to do that. They're doing a PICC Line instead. The PICC line is a super tiny catheter that goes a vein in the arm and they guide it along until it's near the heart. It's definitely much more intense than an IV, so pray it goes well!!

The one HUGE blessing is that the rules here at the PICU are so much lighter than at CRC!! So, my dear Uncle Eli from Maryland who arrived to San Jose this morning was actually able to meet Mia!! We had planned that he'd see Mia through the window at CRC, but meeting her face to face was so much better! Renee, my sister, also was able to see her again. =) She hadn't seen her this close since September and she was so happy! She couldn't believe how big she's gotten... and how big her teeth are! hehe =) Renee says this is the best Christmas gift ever! =)

Robert arrived here safely. Thankfully school was going to be over at the end of the week anyway, so he doesn't need to go back for about 3 weeks. He might have to go back for a morning a week or so. =)

We did get a sweet surprise - two of my very favorite nurses from CRC came to see how Mia was doing. I love Amy and Leslie - even if they don't have Mia as a patient, they always keep an eye on her - they always baby her! Mia has stolen so many hearts. =)

I have internet access here in the PICU, so I'll be able to post blogs regularly. I'll be able to - we'll see if I actually get it done as often as I'd like. =)

Keep praying!

Rachael

Mia is in ER at Good Samaritan Hosptial

Mia was rushed to Good Samaritan by ambulance because her Co2 was up to 99! While she's in the ER, she'll be getting a CT scan of her brain, a chest x-ray and some blood work done before going up to the PICU. She'll likely be here for several days. Please continue to pray for Mia and our family. Robert is on his way down from Sacramento now.