Mia Miracles

Mia had another big day today! She has now been off of the ventilator a total of three hours now for the past two days. To give you an idea what she is actually doing, Mia is still hooked up to the ventilator but the machine is set to provide minimal support. Essentially, the machine only works to overcome the restrictions of the tube so Mia does not feel like she is trying to breath through a soda straw. She is also hooked up to another machine that monitors the size of her breaths as well as the carbon dioxide that she is expelling. The images below are the ventilator (left image) and the CO2 detector (right image).

For the ventilator the yellow indicates a breath that Mia has initiated. This is the machine that up until two days ago was all red indicating that the machine was initiating the breaths for Mia. The CO2 detector has the CO2 level up at the top left corner, in this case its 53. This is the upper end of the limit one would want to see and when Mia would get up to this level or a little more she would start to breath faster to get this level back down to the 40s. The bottom left part of the machine shows a chart of the size of Mia's breaths. Anything that makes it to the top of the chart is a big breath.

She is then left to breathe on her own for the hour while her CO2 is being monitored. The important thing to be looking for is making sure that when her CO2 level increases that she starts breathing more to compensate for it. It is pretty amazing to see this complicated system in her body working in real time. You can watch the CO2 level increase and almost like clock work when it gets to a certain level, Mia will breath a couple of quick deep breaths and bring it back down to acceptable levels.

Initially Mia did this for an hour at a time and then she was allowed to rest for 12 hours. The doctor has been happy with the progress thus far and so she will now be doing this routine every eight hours. The idea here is to give Mia some time to build up her diaphragm muscles and also allow her the chance to rest them for a while. We do not know how long this process will take but it will probably be several days.

The doctor did mention that Mia will likely need to have a feeding tube into her stomach (a g-tube). This will be temporary until Mia is able to learn how to eat through her mouth. Rachael and I are both hoping that won't take long as it is going to be a little unnerving having this tube coming out of her stomach that we feed her with.

Some people were wondering about Mia herself and if there are any known complications with her other than the breathing. We do know that Mia does have eyesight and is capable of using it, as we have seen her track our movements. We are also fairly certain that her hearing is okay as well as we see her react to our voices. She is also responsive to touch and other stimuli. Other than that, it is to early to see if there really our any long lasting neurological issues that she may have.

Tomorrow Rachael's father and sister will be headed home. This will leave just Rachael's mom to be with us until Mia is able to come home. Rachael and I are very grateful that both of our families were able to come out and be with us through this time. There support and encouragement have really helped us out. It's going to feel very quite here at the house for quite some time now that our family is leaving.

A couple of prayer request that you can continue to pray for...

Mia: For her continued progression in being weaned from the breathing tube as well as for her developing the urge to suck so she can eat without needing a feeding tube.

Health: Mercedes has had a cold for the past two days and we have to make sure that we don't pass that cold on to Mia. We also don't want to catch it ourselves because then Rachael and I could not see Mia every day until we were better.

Energy: We all having been running on adrenaline for the past several weeks and it is starting to catch up to all of us. Even though we spend most of our day just sitting and being next to Mia, it is still very taxing going back and forth to the hospital as well as talking with all of the nurses and doctors.

Car: As most of you know, we lost one of our cars about a week ago due to an accident. Thankfully nobody was hurt but we are now currently looking for a replacement vehicle. At the moment nothing has appeared in our price range here in Vegas so we are also looking for something in Northern California as well.

That is all I have for now. If any of you do have any questions that you would like answered please let us know and we will answer them in our blog updates. Thanks again for all your thoughts and prayers.

Robert

One Hour!

God is so good! Today Mia breathed on her own with minimal support from the ventilator for almost one hour! Rachael and I missed the first part of the hour but we hear the doctor had the biggest smile on his face and Mercedes the nurse had tears in her eyes! Everyone was so impressed with how well she did. The plan will now be to repeat this every twelve hours for a day or two, and than to increase it too every eight hours. The amazing thing is, we are actually talking about WHEN we might get to take the breathing tube out!

Rachael and I are so amazed with what God has done in our lives. We are so grateful to all of you that have been praying for us and more specifically for Mia! More updates tonight...

Robert

Still going, nothing outlasts the energizer, she keeps going, and going, and going...

Rachael and I were both nerveous this morning as we came into the hospital. Mia had done so well yesterday but we didn't know how long it would last. Rachael and I rushed into the washroom as soon as we could so we could get cleaned up and get to Mia's bed. I was the first one cleaned up and so I made it to Mia's bed first. Much to our relief Mia was still breathing like she was yesterday!

Dr. Paroozi is so happy with the progress made so far that he is going to try some tests to get an idea of if and when the breathing tube can come out. Of course the big question for Mia now isn't wether she has the urge to breath but now it's a question of her being capable of sensing her carbon dioxide and being able to increase her breathing to clear it out of her system. This testing process will take place over the nex couple of days. If all gos well, hopefully the tube will be coming out for good!

One other surprise is that Mia has her first pacifier! Her nurse Mercedes thought she would try to start stimulating her and seeing if Mia will develop the ability to suck. We are hoping she will be able to do this so she won't need to having a temporary feeding tube in her. Please keep this in prayer for her as Rachael and I would really like to avoide having to deal with a tube in her stomach.

We will post more updates tonight!

Robert

Still going strong!

After Robert's talk with Dr. Nagar yesterday, he really wanted to see what Dr. Piroozi thought about what was going on with Mia. On our way to the hospital this afternoon, I had asked Robert if he wanted to talk with Dr. Piroozi and he had said that he did if he came to Mia's bed. I've noticed that the doctor usually stops by around noon and it was about 12:05 when I looked at the clock and we were still a few minutes away from the hospital, so I prayed that if it was God's will for us to talk with Dr. Piroozi today that he would stop by while we were there. While we were waiting to be buzzed into the NICU, someone was coming out and it just happened to be Dr. Piroozi! He let us in through those doors so we can go into the wash room and wash up before going inside the pod, so we were able to talk with him for a little bit. He mentioned that he had just come back from sitting at Mia's bedside just observing her for about 10 minutes and he was happy that she had been breathing on her own above the vent for the entire time he was there. He says as of right now, he doesn't think she'll need a trach, but of course we don't know if this is going to be the turning point for Mia, though we pray it is!! It blew Robert and I away that this busy doctor actually took the time to come to her bedside and just sit there to observe Mia for who she is! The other doctors only look at her charts, look at the numbers on the machines and listen to her lungs and that's about it. They're not seeing Mia as an individual like this other doctor does. We are so happy God placed such a great man to care for our precious daughter!

Mia's nurse today was a sweet lady named Mercedes. It's so sweet the way she talks with the babies and has little conversations with them. She would call Mia "Peanut", "Buttercup" and "Nutter Butter". =) It was so cute! When we got to Mia's bedside, we asked Mercedes how long she had been breathing on her own and she said that Mia had been like that since the beginning of her shift which was 7am, but that the night nurse said that she had been breathing on her own since 3am!! We are so happy that know we ALL know that Mia is capable of breathing on her own - we just need to pray that she has the strength to continually breathe! We don't know what God is doing or what tomorrow will bring, but we are trusting Him for a complete healing in our baby girl!!

Mia was able to get some tummy time for a little bit this afternoon, but she was being a little trouble maker and scared Mercedes because she kept wanting to pick up her head and turn it the other direction! Of course if she did that, she'd move the ventilator tubes and that could cause big problems, so Mercedes had to put her on her back again. =)

Today it finally happened.... our Mercedes caught a cold! Not too bad for being at a hospital everyday for 3 weeks straight. Pray that she gets over it quickly and that it wouldn't get passed around - especially to me, Robert and most of all, Mia. Now that we know Cedes is sick, we're limiting our closeness with her and also limiting our closeness to Mia just in case.

Continue praying for:

• Mia's healing
• Continued strength and energy for Robert and I
• Healing for me from the c-section
• Mia's milkies supply and that everything in that department will go smoothly. (Pumps are definitely not as good as nursing, and there's some pain going on. Not fun!)
• Guidance and direction for Robert and I, as well as the doctors and nursing staff

Thank you all so much for your ceaseless prayers - may our wonderful Lord bless you all!!

Thank you for your sweet comments, cards, calls, meals, visits, etc... God has blessed us with such kind-hearted friends and family and we are so grateful for you all!

Praying for God's will,
Rachael

Somethings different

Wow... Something is different with Mia! We came in this morning and before we even got to her bed we ran into Dr. Paroozi. He told us that he had spent about 10 minutes watching Mia (now that is an awesome doctor...). He told us that she was doing very well this morning and that she was taking a lot of breaths. Little did we realize just how much that he was describing.

When we walked up to Mia's bed we were amazed to see that she has been sucking down air like congress sucks our tax dollars! For those of you that don't get that, she is breathing like we have never seen her before. Not only is she completely breathing above the machine but the size of the breaths are almost three times larger than we have ever seen before! The nurse informed us that she has been doing this ever since she started her shift which was over 5 hours ago!

Now Rachael and I still have to be careful and realize that this could be a temporary thing, but at least we have seen what she is capable of. Keep up your prayers because we are seeing God working in Mia's life! I'll post more tonight when I get home.

Robert

Learning More...

Today was a different day for us and for Mia. After recovering from the last weaning attempt by the hospital Mia was a little more active and responsive today. Two days ago, the doctors tried weaning Mia down from 15 breaths per minute to 13 breaths per minute. As expected, she did not tolerate it very well as her carbon dioxide levels where off the chrts. She is now back at 18 breaths per minute and doing much better. The doctors are going to try a different method of weaning by lowering the amount of air provided to her and seeing if she will make up the difference. They do this by lowering the pressure of the air given to her by the machine while leaving the amount of breaths at 18 per minute. We are hoping that this method proves to be more effective.


What was different today was that I got the chance to sit and watch Mia by myself for several hours today. I did learn quite a bit about Mia today that I had not noticed before. If I had to put my finger on it, I would say that Mia has grown dependent on the ventilator not because she needs it, rather because that is the only thing she has had since birth. What I saw was that whenever Mia's blood oxygen saturation was at 100% Mia would almost never take a breath on her own, she would ride the machine entirely. Sometimes though, Mia's oxygen saturation would start to fall from 100% down to around the low 90%s. What would happen then was Mia would start taking additional breaths on her own. She would take several breaths over the course of this "desat cycle" until she had gotten herself back up to 100% and then she would be back to riding the ventilator. Now, the number of additional breaths weren't much most of the time but something was definitely triggering something inside of her to take those additional breaths in order for her to get or oxygen back up.

She repeated this cycle I think three times over the hours that I was there and I think this is a very big piece of the puzzle. I'm obviously not an expert on this but this is at least showing that Mia can tell when something isn't quite right and she knows what to do about it. The question in play here is it enough breathing to keep her sustained on her own. My guess is, if she had more of these desat cycles that she would probably get it figured out fairly quickly. Watching other babies at the same time I realized that most babies don't stay at 100% saturation all the time and in fact generally vary from anywhere between 85% on up to 100% and it is constantly changing. Mia on the other hand has spent probably 99.999% of her life with her blood oxygen saturation at 100% and as a result she has never really experienced those cycles of desaturation and and learning to compensate for them.

One of the questions that this answers is why did Mia let her CO2 level go so high when she was at 15 breaths per minute. Observing what I saw today, my guess is that because her blood oxygen saturation was kept at 100% she did not sense the need to breath more to blow off the extra CO2 that was building up in her system. Had her oxygen levels been allowed to wander as they normally would in a body she might have been able to deal with the lower breaths by the machine by adding her own.

The million dollar question in this (at least as far as my health insurance is concerned...:) does she have the ability to sustain herself with her own breathing. My gut instinct is, if we took her off the ventilator that she MIGHT actually do okay. Unfortunately that question is a one way street with the wrong answer being disastrous.

This is where the hospital is coming into play now. I spoke with one of the doctors today who informed me that she felt that they had done about all they could for her and that Rachael and I would have to make a decision on Mia's future, whether she come home with us, or if we were going to let her go. I told her that as far as we were concerned, as long as Mia was making signs of improvement, Rachael and I were happy to just let her be and see where she takes us. Of course, the other factor in this is the other doctor(Dr. Paroozi) that we have spoken to (and the one we like the most) has said that Mia just needs time and that we should not be trying to rush anything. We like this doctor because he really looks at the patient and not just the charts. He is also content to let things progress on there own and to give it some time. You can probably understand why we like Dr. Paroozi so much, it's not that he's giving us false hope but rather because he is content to watch Mia and see where she goes.

Now, we recognize that even our favorite doctor will at one point have to come and tell Rachael and I where Mia stands and that it might not be the news we want to hear. At this moment, recognizing that Mia does look like she should be wean-able from the ventilator we are starting to look into facilities that deal with just this sort of thing. My sister, Katie has found a place down in LA that sounds like a good candidate for Mia. This facility works to wean people off of ventilators and to rehab them as much as possible. Apparently they have had some pretty good success with scenarios that make Mia look like a cake walk. Of course we realize that Mia's case might be different than all of the other people they have had success with but we think that this is definitely worth perusing.

So, our game plan right now is to TRY to wean Mia off of the vent while at the Children's hospital. If that is unsuccessful than we will try to have Mia moved down to this facility in LA and let them work with her.

For prayer, please pray that we will be able to find a facility that has availability for Mia. We are only at the beginning stages of looking into this and we don't even know if Mia would be eligible or not. Also please pray for wisdom for Mia's doctors and letting her have the time that she needs. Please pray for the logistics and time frame of having to move Mia if that is what it comes down too. Finally, continue to pray for Mia, she has been through a lot over the last three weeks and the continued weaning attempts are very taxing on her.

Thank you all for your prayers and support.

Robert

Tuesday's update

Yesterday was another quiet day. The doctors want to, obviously, wean Mia off of the ventilator, so they've been lowering the breaths per minute a little bit each day. We had heard they were going to stop for a few days at 15bpm, but they lowered her to 13bpm and apparently she wasn't doing so well with it. When we went to visit her yesterday, she was back up to 18bpm and was pretty lethargic most of the day. She was also wearing socks on her hands, too! She looked pretty silly, if you ask me. haha She's very aware of the tubes in her mouth and lets everybody know she doesn't like them and wants to keep grabbing them - thus the socks. =)

I was able to hold her for a little over an hour, which is one of the longest times I've been able to hold her, so that was special. =) Robert took over so I could pump and there was a mishap with getting Mia back in her bed. The other nurse helping Karla decided to unhook the vent tubes from Mia and ended up dropping all the tubes on the floor, so Mia was without it for a little bit. They had to sanitize the tubes, so Karla was giving Mia breaths manually with a bag in the meantime. Everything's all good now... I'm just glad I wasn't there for the "excitement"! Poor Karla was quite nervous, I hear.

Keep praying for Mia that her knowing when to breathe would kick in and that she'll have the strength to keep it up. We're still waiting for the rest of the muscle biopsy results and some other test results I think, so keep praying!

Mercedes graduated (finally!) to sleeping in her big girl bed in her new bedroom two nights ago and she is and she is loving it! Since she never complained about being in her crib, we just never took her out. She doesn't know that most other 2 1/2 year olds are sleeping in beds, so no harm to her! We were dreading it a little bit because we thought for sure she'd be getting out every few minutes, but so far so good! She just stays in her bed and reads a book or plays with a few toys until she falls asleep. We're very happy with how she's transitioning with being a big girl!
She loves her baby sister so much, it's so sweet! Whenever we get near the hospital, she says "Here's Mia!" When we leave, she says "Bye, Mia! Yo te amo, Mia Amornay!" (I love you) Whenever she sees a picture of Mia, she HAS to kiss it... it really is so sweet. =)




We're praying today will be another good day - and we're praying the doctors will see Mia as Mia, just not another baby on a ventilator. Pray they just wait for her to get stronger before they try anymore weaning. Though it may just a very subtle in their eyes, it's apparently drastic for Mia.

Thank you all for your continued prayers, love and support! We love you all...

Rachael