Okay... maybe not slight... the Stanford doctors had a board meeting this morning and they decided they're going to deny Mia's acceptance because medically speaking, she doesn't need NICU care, but our insurance is saying that MUST be transfered to a NICU before she can go to a long-term facility (the weaning place). I don't know if it was just a misunderstanding that Stanford thinks she needs to be there until she's weaned off completely or whatever and that's not the case. She only needs to be there to get into CA and then they need to refer her to the Children's Recovery Center... that's it! Sounds simple enough to me, but of course, it all comes down to money.
The director at Children's Recovery Center thinks it'd be best for either Robert or I to go to the bay area, enroll Mia in Medi-Cal and then she can get transfered to CRC directly, but the paperwork will take about a month to process.
The case manager at the hospital is going to call Lucile Packard Children's Hospital to see if they'll accept Mia. Like I've said before, God knows what He's doing... we don't understand it all, but we can trust Him!
Keep praying,
Rachael
Tuesday, March 31, 2009
Monday, March 30, 2009
California, here we come!
It's official... Mia's been accepted into Stanford's NICU!! She'll be transported by air (probably a small plane) on Friday, so that means Robert, Mercedes, Betsy and I will drive out on Thursday because we have to be at the hospital when she arrives.
The hospital and insurance company OKed Mia to leave on Wednesday, but then that would have meant that we'd have to leave tomorrow. We had plans for Tuesday and Wednesday to have some people come by to pray with us and to visit/meet Mia before we all left, so Dr. Piroozi said it's fine if Mia leaves a little later so we are able to get everything done that we still have to do!
I have Mercedes' and my clothes packed... now we just have to get the other things that will be helpful to have with us since we won't be coming back to Vegas. For the past almost 4 years, we couldn't WAIT to leave this town... now that it's actually happening, it's hard to leave! Definitely not because of the city, but because of all the wonderful friends that we've made - I'm going to miss you all soo much!! Make sure you come visit us in California, ok?? I'll show you around!!
Mia is doing well... very stable, except for a few times she desated yesterday. They're thinking that the bigger trach is just a little too long, so it's causing the gas exchange to not be the greatest, so they're making sure they're keeping some tension on it so it doesn't go too far in. There was also a very short time yesterday that her heart did a strange rhythm, so they hooked her up to a heart monitor that's recording everything it does for 24 hours, then they'll take a look and see if anything is going on. They don't think it's anything to worry about, but they just want to do everything they can just to be on the safe side. Mia is just as beautiful as ever... but at the same time, she's getting more adorable everyday!! As of yesterday, she's weighing in at 8lbs 5oz, so she's starting to chunk up a little bit! =)
Continue to keep all of us in your prayers!
-The move for the girls and I
-Robert's job transition (we don't know when he'll be moving out to CA permanently)
-Safe travels for us by car and Mia by plane
-The doctors and nursing staff at Stanford who will be caring for Mia while she's there
-Continued healing for Mia
If any of you are in Vegas and want to meet Mia, please let me know! Tuesday and Wednesday will be the only time you can see her... and we'd love to say bye to you. I'll be at the hospital basically all day (12ish until 7ish for sure) Tuesday and Wednesday. Give me a call or email... please don't feel like we're too busy - we're usually sitting there talking to the nurse or sitting next to Mia - we'd love to have you come by!
Sorry I'm not adding a picture today... the camera is in my purse in the other room and I'm too tired to go get it. =)
Blessed,
Rachael <3
The hospital and insurance company OKed Mia to leave on Wednesday, but then that would have meant that we'd have to leave tomorrow. We had plans for Tuesday and Wednesday to have some people come by to pray with us and to visit/meet Mia before we all left, so Dr. Piroozi said it's fine if Mia leaves a little later so we are able to get everything done that we still have to do!
I have Mercedes' and my clothes packed... now we just have to get the other things that will be helpful to have with us since we won't be coming back to Vegas. For the past almost 4 years, we couldn't WAIT to leave this town... now that it's actually happening, it's hard to leave! Definitely not because of the city, but because of all the wonderful friends that we've made - I'm going to miss you all soo much!! Make sure you come visit us in California, ok?? I'll show you around!!
Mia is doing well... very stable, except for a few times she desated yesterday. They're thinking that the bigger trach is just a little too long, so it's causing the gas exchange to not be the greatest, so they're making sure they're keeping some tension on it so it doesn't go too far in. There was also a very short time yesterday that her heart did a strange rhythm, so they hooked her up to a heart monitor that's recording everything it does for 24 hours, then they'll take a look and see if anything is going on. They don't think it's anything to worry about, but they just want to do everything they can just to be on the safe side. Mia is just as beautiful as ever... but at the same time, she's getting more adorable everyday!! As of yesterday, she's weighing in at 8lbs 5oz, so she's starting to chunk up a little bit! =)
Continue to keep all of us in your prayers!
-The move for the girls and I
-Robert's job transition (we don't know when he'll be moving out to CA permanently)
-Safe travels for us by car and Mia by plane
-The doctors and nursing staff at Stanford who will be caring for Mia while she's there
-Continued healing for Mia
If any of you are in Vegas and want to meet Mia, please let me know! Tuesday and Wednesday will be the only time you can see her... and we'd love to say bye to you. I'll be at the hospital basically all day (12ish until 7ish for sure) Tuesday and Wednesday. Give me a call or email... please don't feel like we're too busy - we're usually sitting there talking to the nurse or sitting next to Mia - we'd love to have you come by!
Sorry I'm not adding a picture today... the camera is in my purse in the other room and I'm too tired to go get it. =)
Blessed,
Rachael <3
Saturday, March 28, 2009
Dear Friends and Family,
It's been a while since I have posted any updates. Rachael and I made a deal tonight that if she got Mercedes ready for bed then I would post the update to the blog...
So, the good news is, currently it still looks like Mia will be able to go to the weaning facility in San Jose. Initially there was a misunderstanding with Tri-Care (our insurance company) and so we thought we might have ran into a brick wall. However, God as he always does is working things out even better than we could have imagined. We found out that the reason why Tri-Care said no was because we were trying to transfer her directly from the Children's hospital in Las Vegas to Children's Recovery Care Center (the long term weaning facility) in San Jose.
The issue happened to be that Tri-Care will only transfer Mia from one NICU to another NICU before she can be transferred to the weaning facility. They gave us several options of facilities that Mia can go to en-route to the weaning facility and one of the options just happened to be the Children's hospital at Stanford University! Assuming she is able to be accepted at Stanford's NICU, we do not know how long Mia will be there before they transfer her over to the weaning facility but we are hoping that she will be there long enough for some of the doctors at Stanford to take a look at her. We have been very happy with all of Mia's doctors here in Las Vegas but we think it will be good for Mia to be exposed to other doctors in the hopes that one of them has seen something similar before.
So, as it looks now... If all goes well with the insurance company than Mia will likely be transferred sometime this week or early next to the Bay Area. Rachael, Mercedes, my mom will likely drive out to San Jose the day before Mia is transferred. We don't know for sure but we are guessing that Mia will be transported by plane, if there is room and it is allowed I will try to fly out with her.
On the work side, I got that chance to speak with my Group Commander Col Manohan (my boss's boss, he has about 1000 people working for him) about our situation. I couldn't believe how supportive he was when he was telling me that my number one focus was on Mia and to not worry about work. He said that he will work to get me transferred to Beale AFB so I am only a couple of hours away from the Girls. He also said that if there were any problems with anything from doctors, insurance, or work to let him know and he would take care of it. I couldn't express enough gratitude to know that he is willing to do whatever it takes in order to help our family with this situation. God really does work in wonderful ways!
Thanks again for all of your prayers and support. We are hoping that on Monday we will have a better idea of where and when Mia will be headed. We know that God is in control and he will make sure that Mia has exactly what she needs.
It's been a while since I have posted any updates. Rachael and I made a deal tonight that if she got Mercedes ready for bed then I would post the update to the blog...
So, the good news is, currently it still looks like Mia will be able to go to the weaning facility in San Jose. Initially there was a misunderstanding with Tri-Care (our insurance company) and so we thought we might have ran into a brick wall. However, God as he always does is working things out even better than we could have imagined. We found out that the reason why Tri-Care said no was because we were trying to transfer her directly from the Children's hospital in Las Vegas to Children's Recovery Care Center (the long term weaning facility) in San Jose.
The issue happened to be that Tri-Care will only transfer Mia from one NICU to another NICU before she can be transferred to the weaning facility. They gave us several options of facilities that Mia can go to en-route to the weaning facility and one of the options just happened to be the Children's hospital at Stanford University! Assuming she is able to be accepted at Stanford's NICU, we do not know how long Mia will be there before they transfer her over to the weaning facility but we are hoping that she will be there long enough for some of the doctors at Stanford to take a look at her. We have been very happy with all of Mia's doctors here in Las Vegas but we think it will be good for Mia to be exposed to other doctors in the hopes that one of them has seen something similar before.
So, as it looks now... If all goes well with the insurance company than Mia will likely be transferred sometime this week or early next to the Bay Area. Rachael, Mercedes, my mom will likely drive out to San Jose the day before Mia is transferred. We don't know for sure but we are guessing that Mia will be transported by plane, if there is room and it is allowed I will try to fly out with her.
On the work side, I got that chance to speak with my Group Commander Col Manohan (my boss's boss, he has about 1000 people working for him) about our situation. I couldn't believe how supportive he was when he was telling me that my number one focus was on Mia and to not worry about work. He said that he will work to get me transferred to Beale AFB so I am only a couple of hours away from the Girls. He also said that if there were any problems with anything from doctors, insurance, or work to let him know and he would take care of it. I couldn't express enough gratitude to know that he is willing to do whatever it takes in order to help our family with this situation. God really does work in wonderful ways!
Thanks again for all of your prayers and support. We are hoping that on Monday we will have a better idea of where and when Mia will be headed. We know that God is in control and he will make sure that Mia has exactly what she needs.
Wednesday, March 25, 2009
Huge news ...
Hi Everyone,
These past two days have been extremely hopeful!! Every blog we post, my sister Renee copies and posts them on her Facebook page so others can know what's going on in Mia's life and such. One gal responded to the previous posting and asked if the facility I had mentioned was a particular place. Well.. it wasn't, but we went onto that places' website and I called them yesterday. These two places are the only two in all of Northern CA and they both just happen to be within 20 minutes of where my parents live. This place specializes in infants/babies and the other place in Saratoga is more for older kids. I talked with a lady on the phone yesterday and briefly told her of Mia's situation and I asked what the criteria needs to be for babies and how long the waiting list is. She said Mia meets all of the criteria and there's actually one bed available right now!!
Right away, I cried because I would have never thought that there were facilities so close to family and that there would actually be space available! I automatically thought that there'd be a 6-9 month waiting list, etc. Right now, the case manager at the hospital is working in our insurance company to see if they would cover the care as well as the transportation of Mia to the Bay Area. Robert talked with a lady from the insurance company and when he mentioned our baby's name, she told him that she had just seen Mia's name on a list and her name struck her as someone important. She told Robert that God will work everything out. =) We thought that was incredible!!
Dr. Blahnik said that because there's nothing else Mia needs medically, she can be transported as soon as Monday! So... if that's the case, Mercedes, Mia and I will be in the San Jose area next week! Robert will probably stay for a few months here in Vegas, but of course, we're just talking about things right now. Nothing is set in stone at all, obviously, since we don't know if the bed is still available or if the insurance will cover any of the care.
Please keep this all in your prayers!! It sure seems like it's God who's orchestrating all of this, but of course we want to always be in the center of His will. Please pray for wisdom for Robert and I as we make these possible HUGE decisions for our family!
Betsy (Robert's Mom) arrived today and my Mom goes back home to San Jose on Friday, so if we do head out to San Jose on Monday, Betsy will drive with me and Cedes.
Mia is doing really well. She's very stable, which is great! She hasn't been causing any trouble for the doctors or nurses, so we're happy to hear that. =) Dr. Miller sent out a DNA test two weeks ago and he was assuming it was to test for 105,000 things (it's a 105K test) and the results came back today. Everything's completely normal. Everything they've tested her for has come out either negative or normal which is so baffling to everybody!! Clearly, something isn't right if she's having seizures and not breathing on her own... Patricia, Mia's nurse, thinks that maybe all Mia needs is rehab to overcome all of these problems. Only God knows!! =)
Please continue to pray for the possibility of Mia being transfered to Children's Recovery Center in Campbell. If it's God's will, it looks like things will move very quickly. Also pray for me because it's going to be soo hard to have to say goodbye to my dear friends that I've met here over the past 4 years! =(
Excited to see what our God is doing,
Rachael
The pictures are from today - Mia's 7 weeks old (49 days old), so she's sporting a cute outfit from her Pops ... as well as a cute teddy bear he gave to her when he visited! =)
These past two days have been extremely hopeful!! Every blog we post, my sister Renee copies and posts them on her Facebook page so others can know what's going on in Mia's life and such. One gal responded to the previous posting and asked if the facility I had mentioned was a particular place. Well.. it wasn't, but we went onto that places' website and I called them yesterday. These two places are the only two in all of Northern CA and they both just happen to be within 20 minutes of where my parents live. This place specializes in infants/babies and the other place in Saratoga is more for older kids. I talked with a lady on the phone yesterday and briefly told her of Mia's situation and I asked what the criteria needs to be for babies and how long the waiting list is. She said Mia meets all of the criteria and there's actually one bed available right now!!
Right away, I cried because I would have never thought that there were facilities so close to family and that there would actually be space available! I automatically thought that there'd be a 6-9 month waiting list, etc. Right now, the case manager at the hospital is working in our insurance company to see if they would cover the care as well as the transportation of Mia to the Bay Area. Robert talked with a lady from the insurance company and when he mentioned our baby's name, she told him that she had just seen Mia's name on a list and her name struck her as someone important. She told Robert that God will work everything out. =) We thought that was incredible!!
Dr. Blahnik said that because there's nothing else Mia needs medically, she can be transported as soon as Monday! So... if that's the case, Mercedes, Mia and I will be in the San Jose area next week! Robert will probably stay for a few months here in Vegas, but of course, we're just talking about things right now. Nothing is set in stone at all, obviously, since we don't know if the bed is still available or if the insurance will cover any of the care.
Please keep this all in your prayers!! It sure seems like it's God who's orchestrating all of this, but of course we want to always be in the center of His will. Please pray for wisdom for Robert and I as we make these possible HUGE decisions for our family!
Betsy (Robert's Mom) arrived today and my Mom goes back home to San Jose on Friday, so if we do head out to San Jose on Monday, Betsy will drive with me and Cedes.
Mia is doing really well. She's very stable, which is great! She hasn't been causing any trouble for the doctors or nurses, so we're happy to hear that. =) Dr. Miller sent out a DNA test two weeks ago and he was assuming it was to test for 105,000 things (it's a 105K test) and the results came back today. Everything's completely normal. Everything they've tested her for has come out either negative or normal which is so baffling to everybody!! Clearly, something isn't right if she's having seizures and not breathing on her own... Patricia, Mia's nurse, thinks that maybe all Mia needs is rehab to overcome all of these problems. Only God knows!! =)
Please continue to pray for the possibility of Mia being transfered to Children's Recovery Center in Campbell. If it's God's will, it looks like things will move very quickly. Also pray for me because it's going to be soo hard to have to say goodbye to my dear friends that I've met here over the past 4 years! =(
Excited to see what our God is doing,
Rachael
The pictures are from today - Mia's 7 weeks old (49 days old), so she's sporting a cute outfit from her Pops ... as well as a cute teddy bear he gave to her when he visited! =)
Monday, March 23, 2009
Weekend update...
Hi Everyone,Well, Saturday was pretty uneventful for Mia, which is always good!! =) She's healing up very nicely from the surgeries and is now up to full feeds, but right now it's just a continuous feed. Tomorrow, they're going to start grouping them together to get a more normal sized feeding so her tummy can slowly stretch back. Our goal is to get the feedings to 75ccs every three hours, then she'll be on continuous feedings at night (since I guess that's how it usually goes with babies who have a g-tube).
Yesterday, was very eventful... not in a good way!! Robert went to visit her in the morning, then I met up with him a couple hours later. Before I left the house, I called to see how she was doing and he said she wasn't doing very well and that she had desated (oxygen level dropped) to the 30's. It should always be, on everybody, around 95 to 100. He said she was fine, so I didn't really think much of it. When I got to the NICU, he told me that the nurse had to give her manual breaths with the bag to try to get her oxygen level back up to where it should be. She was doing good when I got there, so I figured everything was fine, so I didn't think too much about it after that. Well... about 2 hours later, they suctioned her trach and then a few minutes later, she was desating quickly. I found the nurse and told her what was going on and she rushed over to her, cranked up her oxygen level that the ventilator gives her, but that wasn't helping. She got back down to the 30's again. She called the doctor, so he rushed over to her bedside... he called the Respiratory Therapist and I just watched while Mia was turning blue. They were bagging her and once they got her reading up to the 70's, they sectioned the trach again, but this time the RT went a little deeper and got a glob that had plugged her airway so that no air was moving in OR out of her lungs. As soon as the RT pulled it out, Mia instantly turned pink, woke up and starting moving her arms, legs and head. Everybody was relieved... especially her Mommy!! It was actually rather refreshing to me to see the doctor and nurses scared because it just it meant that they know they're only human as well and don't always know what's going on. It was nice to see that they weren't just calm and relaxed and that they saw Mia's situation extremely important. I don't know if that makes any sense ... I know most people would freak out if they saw a doctor freak out, but I found it refreshing! =) The most important thing is that Mia is fine and has been fine since. =)
She's so alert and is moving her head a lot now... it's so nice to see that she's gaining strength in her little body! =) Now that all of her swelling is gone from her face, her mouth is exactly like Mercedes'! Same little lips and everything... it's so cute. =)
On my way to the hospital yesterday, I was listening to the Christian radio station and a song that I've heard probably a thousand times was playing.... and God totally spoke to me through it. It's MercyMe's song Bring The Rain (http://www.youtube.com/watch?v=e8HgAVenbUU&feature=related) If you'd like to listen to it, click on the link above. If you want to read the lyrics with it, click here: http://www.azlyrics.com/lyrics/mercyme/bringtherain.html
Sometimes I feel like I'm not as concerned or stressed out about Mia as I should be, but I know it's because God is giving me the peace and strength that I need to get through this time in our lives. I'm just so grateful that I'm NOT stressed out at all... I know that God isn't surprised at any of this - this is His plan for us. We don't understand why He chose for this to happen, but we trust Him no matter what. =)
There are some prayer requests that we have...
- Medically, there's nothing more that needs to be done for Mia (that we're aware of), so she's basically ready to go home, but we're wanting to try to find a chronic care facility that specializes in ventilator weaning that she can be at for several months so we can try to get her weaned off the vent as much as possible, if not completely. There aren't any in the state of Nevada, so we're hoping on finding one in the San Jose/San Francisco/Sacramento area. We did hear of one in Saratoga, CA, so if anyone knows of any others, please let us know!! The way it works (we think) is that Mia will need to be transfered to another NICU in the Bay Area, then from there, go to a vent weaning facility.
- Robert's commitment is up this June, but because he got a job change to work at Creech AFB (just a half hour away), we're here until December. So, being that we have to move in December anyway, whenever Mia gets transfered to another hospital, the girls and I will move to CA ahead Robert. Robert's boss is trying to see if he can get transfered to another base - Beale AFB or Travis AFB so we can be closer to family for daily support.
- If we're unable to find a weaning facility, we don't really know where we'll live since Mia will basically need a mini ICU wherever we are.
- As always, continued healing for Mia. God has shown His mighty works in her little life already!
- Pray that Mia will start to develop a sucking reflex and that she will master that skill! Also, that she will show emotion. I'm looking forward to seeing her smile!! =)
Love to you all,
Rachael
Friday, March 20, 2009
Happy Spring!
Happy Spring from the Adamis Girls!
Hi Everybody,
Aren't these pictures just too cute?
Well, today was a really good day for Mia. She seems SO much more comfortable with the trach and actually seems happy. I was at the hospital today from 11am-4:30pm and she was awake the majority of the time. She's very active and moving quite a bit ... she's now able to move her head whenever she wants, so I'm sure she's really enjoying that freedom!
Mia's breathing is great. They're not trying anything off the ventilator right now, of course, but she's breathing approximately 25-50 breaths per minute above the vent settings - which is really good! =) The pediatric pulmonologist and the surgeon both came by today to see how Mia was doing and they both said she's looking good. Dr. Blahnik ordered to increase her feedings to 10ccs over an hour... I think every hour until she's back up to her normal 65ccs every three hours. I asked when we'll be able to begin to stimulate her mouth and Dr. Blahnik said it should be fine to introduce a pacifier to see if she'll be able to start sucking on that and possibly figure out how to swallow, so I'm excited about that!My poor baby has been a living pin cushion!! She's had an IV in her right hand, right foot, left foot, right hand again, left hand, now it's in her left wrist! All since last Thursday!! The IVs aren't staying good for very long, so they have to keep moving them. Once she's done with the antibiotics course, she shouldn't need the IV anymore - I hope that's soon!! Because of all the fluids they've been giving her, she's pretty swollen (that's why her face looks so chubby... or chubbier than natural!) I can't wait to see what she looks like without all this fluid retention. =)
Mercedes has another cold and cough again and now Robert has a sore throat. Pray we all get better soon... and that I don't get the cold again! I'm just dealing with allergies at the moment, but with my bad sinus issues, it's usually worse than a normal persons cold symptoms.
Robert's Mom is arriving next Wednesday to be here and to help out... I'm not sure how long my Mom will be here, but I know my Dad is itching to get her back home for a little bit- he misses her!! Whenever she goes home, I'm sure she'll be back a few weeks later for a little bit again. We're so grateful for all the help both of our Moms have been during this time - we can't thank them enough!! =)Thank you for your continued prayers, love and support!
Always,
Rachael <3
Wednesday, March 18, 2009
Mia's surgeries successful!
Hi Everyone,
Thank you all for your prayers for baby Mia! She went in for the surgeries (tracheostomy, fundoplication, and g-tube) around 2:30pm and Robert and I met with the surgeon and anesthesiologist, signed the papers, and gave Mia a kiss before they wheeled her away into the OR. Robert and I went upstairs and waited in the Family Lounge room across from the NICU and were pleasantly surprised when the surgeon walked in to talk with us post-op only 2 hours later!! He said Mia did great with everything, though he did find that she does have a hernia that will need to be repaired at a later time. After he finished talking with us, he asked us to give the nurses about 20 minutes to get Mia's incubator all plugged in and everything working before we go in... basically so we're not in their way. So, we waited some more..... and I was just sooo eager to see what my baby's face looked like without the tape I've seen for 6 weeks covering her upper lip!! We walked in and I just started to cry because it was like my first time seeing my baby! She's so adorable! You hardly notice the trache and g-tube, which is actually nice. The fundo surgery required 5 small incisions on her tummy, but those should heal up quickly and nicely. From the pictures below you can see that it will also take a few days for Mia's cheeks to recover from having the tape on them for 6 weeks.
Even when Mia was still knocked out with the anesthesia, she was breathing 64 breaths per minute. Before the surgery, she was riding the vent about 70% of the time, so this was incredible! We'll see if it's a new trend. We're praying it is!! =)
We'll update every other day, or as really significant things happen.
Continue praying!
Always,
Rachael
Below are before and after pictures from today.
Thank you all for your prayers for baby Mia! She went in for the surgeries (tracheostomy, fundoplication, and g-tube) around 2:30pm and Robert and I met with the surgeon and anesthesiologist, signed the papers, and gave Mia a kiss before they wheeled her away into the OR. Robert and I went upstairs and waited in the Family Lounge room across from the NICU and were pleasantly surprised when the surgeon walked in to talk with us post-op only 2 hours later!! He said Mia did great with everything, though he did find that she does have a hernia that will need to be repaired at a later time. After he finished talking with us, he asked us to give the nurses about 20 minutes to get Mia's incubator all plugged in and everything working before we go in... basically so we're not in their way. So, we waited some more..... and I was just sooo eager to see what my baby's face looked like without the tape I've seen for 6 weeks covering her upper lip!! We walked in and I just started to cry because it was like my first time seeing my baby! She's so adorable! You hardly notice the trache and g-tube, which is actually nice. The fundo surgery required 5 small incisions on her tummy, but those should heal up quickly and nicely. From the pictures below you can see that it will also take a few days for Mia's cheeks to recover from having the tape on them for 6 weeks.
Even when Mia was still knocked out with the anesthesia, she was breathing 64 breaths per minute. Before the surgery, she was riding the vent about 70% of the time, so this was incredible! We'll see if it's a new trend. We're praying it is!! =)
We'll update every other day, or as really significant things happen.
Continue praying!
Always,
Rachael
Below are before and after pictures from today.
Tuesday, March 17, 2009
Very brief update
Hi everybody,
Just wanted to let you know that Mia's surgeries are scheduled for 2:00pm tomorrow, March 18th. She'll be exactly 6 weeks old. The surgeries should take approximately 3 hours. Please be praying!!
Also, Robert and I decided that we'd write blogs every other day or as significant things happen. So, hopefully you won't get too anxious when you don't hear anything for a day or so!! =)
Again, thank you so much for your continued prayers for our baby girl - what a strong baby she's proving to be! God is good - we've always known that, but now He's showing Himself in a very personal way ... it's incredible.
Lovingly,
Rachael
Just wanted to let you know that Mia's surgeries are scheduled for 2:00pm tomorrow, March 18th. She'll be exactly 6 weeks old. The surgeries should take approximately 3 hours. Please be praying!!
Also, Robert and I decided that we'd write blogs every other day or as significant things happen. So, hopefully you won't get too anxious when you don't hear anything for a day or so!! =)
Again, thank you so much for your continued prayers for our baby girl - what a strong baby she's proving to be! God is good - we've always known that, but now He's showing Himself in a very personal way ... it's incredible.
Lovingly,
Rachael
Monday, March 16, 2009
Weekend update
Hi Everybody,
Sorry we haven't written in a few days ... it's always nice when Robert writes it because that means I don't have to!! =) He was away Friday and Saturday and I just never found the time to update. I apologize.
Mia is doing pretty good... nothing drastic in either direction, so we're happy. =) We tried another Sprint test (the vent basically not giving her any breaths, but still giving her the oxygen) and she did great for the hour. It seemed as though she knew how long she was supposed to breathe on her own for because at around 1 hour and 5 minutes, she just stopped breathing on her own. I'd shake her leg a little and then she'd start breathing again. She scared me a few times because we still had to wait for the respiratory therapist to turn the machine back on!! Mia likes to get her Mommy nervous. =) The one hour really wiped her out, so the rest of the day and part of the following day, she rode the vent off and on. Yesterday and today, she was breathing very consistently, which we're happy for!
We found out today that Mia is tentatively scheduled for her surgeries on Wednesday. We'll find out tomorrow around what time it'll be happening. If she's the first patient, then it'll be at 7am. If she's not, then the doctors just call for the next patient after the previous one is finished. She will be having the trach, fundoplication (for her reflux), and g-tube surgeries done. Total time for the surgeries should be around 3 hours. Please, please pray for Mia especially since she'll have to go under general anesthesia and she'll likely be very uncomfortable and drugged up for about the first week. Pray her little body is strong enough and that everything heals quickly and properly so she can start discovering new things - ie, putting her fingers in her mouth, sucking on a pacifier, etc. With the trach, we'll be able to, much more freely, hold her in different positions; she'll be able to go in a bouncy seat; a swing ... possibly be able to graduate to an open crib.... exciting new things! Pray for wisdom for the surgeons, doctors, nurses and for Robert and I as well.
One thing I find exciting is that Mia is around 20-1/2'' long now and is up to 7 lbs 10-1/2 ounces!! She was born at around 18-7/8'' and 5 lbs 12 ounces! She's growing quite a bit... it's exciting! =)
I HAVE A NEW CAR!!!! I love it!! Robert flew out on Friday and drove the car back out here on Saturday. Mercedes jumped in the back seat and was so excited! She was crying when we were going back 
inside the house because she didn't want to get out to finish her dinner!! After we put Cedes to bed, I made Robert come with me so I could drive the car around the neighborhood... then, of course, I had to drop him off so I could take my Mom around the area! The whole time, I couldn't stop smiling... it's so fun to drive! It's a 2002 VW Passat Wagon. The previous owner 
took excellent care of it... it looks brand new!
Thank you to Christian for taking Robert to the airport and me to the hospital on Friday... we really appreciated it! Jennifer, thank you for picking me up from the hospital on Friday evening and also taking me to and from it on Saturday as well! I enjoyed meeting you and getting to know you. Chaplain Kelley, thank you for setting that up for me so I could be able to visit with my baby while I was without a car!
T
hank you to everybody for the wonderful meals you've been bringing... it's such a blessing!
Much love to you all,
Rachael
Sorry we haven't written in a few days ... it's always nice when Robert writes it because that means I don't have to!! =) He was away Friday and Saturday and I just never found the time to update. I apologize.
Mia is doing pretty good... nothing drastic in either direction, so we're happy. =) We tried another Sprint test (the vent basically not giving her any breaths, but still giving her the oxygen) and she did great for the hour. It seemed as though she knew how long she was supposed to breathe on her own for because at around 1 hour and 5 minutes, she just stopped breathing on her own. I'd shake her leg a little and then she'd start breathing again. She scared me a few times because we still had to wait for the respiratory therapist to turn the machine back on!! Mia likes to get her Mommy nervous. =) The one hour really wiped her out, so the rest of the day and part of the following day, she rode the vent off and on. Yesterday and today, she was breathing very consistently, which we're happy for!
We found out today that Mia is tentatively scheduled for her surgeries on Wednesday. We'll find out tomorrow around what time it'll be happening. If she's the first patient, then it'll be at 7am. If she's not, then the doctors just call for the next patient after the previous one is finished. She will be having the trach, fundoplication (for her reflux), and g-tube surgeries done. Total time for the surgeries should be around 3 hours. Please, please pray for Mia especially since she'll have to go under general anesthesia and she'll likely be very uncomfortable and drugged up for about the first week. Pray her little body is strong enough and that everything heals quickly and properly so she can start discovering new things - ie, putting her fingers in her mouth, sucking on a pacifier, etc. With the trach, we'll be able to, much more freely, hold her in different positions; she'll be able to go in a bouncy seat; a swing ... possibly be able to graduate to an open crib.... exciting new things! Pray for wisdom for the surgeons, doctors, nurses and for Robert and I as well.One thing I find exciting is that Mia is around 20-1/2'' long now and is up to 7 lbs 10-1/2 ounces!! She was born at around 18-7/8'' and 5 lbs 12 ounces! She's growing quite a bit... it's exciting! =)
I HAVE A NEW CAR!!!! I love it!! Robert flew out on Friday and drove the car back out here on Saturday. Mercedes jumped in the back seat and was so excited! She was crying when we were going back 
inside the house because she didn't want to get out to finish her dinner!! After we put Cedes to bed, I made Robert come with me so I could drive the car around the neighborhood... then, of course, I had to drop him off so I could take my Mom around the area! The whole time, I couldn't stop smiling... it's so fun to drive! It's a 2002 VW Passat Wagon. The previous owner 
took excellent care of it... it looks brand new!Thank you to Christian for taking Robert to the airport and me to the hospital on Friday... we really appreciated it! Jennifer, thank you for picking me up from the hospital on Friday evening and also taking me to and from it on Saturday as well! I enjoyed meeting you and getting to know you. Chaplain Kelley, thank you for setting that up for me so I could be able to visit with my baby while I was without a car!
T
hank you to everybody for the wonderful meals you've been bringing... it's such a blessing!Much love to you all,
Rachael
Thursday, March 12, 2009
Meeting Time...
Well today was the day that we had our meeting with everyone. There was Dr. Miller, Dr. Parks, Dr. Piroozi, Patricia the Nurse, Ingrid the social worker, my boss Major Turner and Rachael and I. The meeting went a lot longer then we had anticipated because Dr. Parks likes to be very detailed in his explanations (to the slight frustration of his colleuges I might add...).
The main part of the discussion revolved around where Mia was at and what phase the doctors felt she is in. All three of them felt that at this point she was in a steady state mode or put in better words she is no longer improving dramatically like we have seen over the past couple of weeks. They all feel that at this point, it will be best to go ahead and put the trache in so that we can start to stimulate Mia and be more active with her. The general feeling is that Mia will likely be on the vent for at least another month or two and it would not be good to continue her on the breathing tube where she can't be handled.
Rachael and I agreed and said that we were fine with the trache and the feeding tube since that looks like it will be easier for everyone involved. The issue is the current breathing tube that Mia has is likely full of bacteria and the doctors would like to replace this tube a couple of days before the trache surgery just to insure that the bacteria can't cause any problems. During the replacing of the breathing tube, Dr. Parks the lung doctor and Dr. Piroozi felt that it would be good to test her to see what Mia is capable of. They want to pull the breathing tube out and see what she does and for how long she will do it. The general consensous is that she will likely fail fairly quickly but at least it will give us all an idea of what she is capable of.
The complication to all of this is, Mia was pretty difficult to get the breathing tube in the first place. If she hadn't been so difficult in the first place they probably would have changed out the tube a couple of weeks ago. This leaves us all in a tough spot because we have to balance the need for knowing what Mia is capable of with her long term safety as well. There is some concern that there might be trouble in getting the tube back into Mia in a timely fashion and the effects could be long lasting.
If I had to guess the doctors long term opinion they don't believe that Mia will be impossible to be weaned off of the ventilator but they feel it is going to take a lot longer than a month or two. If this is the case than we are now playing into this timeframe of how long can we keep her at the hospital and what do we do afterward?
Doctor Parks told us that in Nevada there really isn't the infastructure in place that would be able to take Mia in her current condition. Given her instability on a day to day basis Rachael and I would have a lot of concern of trying to take her home at this point. We did bring up the fact that we would be looking into a longer term care facility for Mia if she could no longer stay in the hospital. It seemed like the general feeling was looking for such a facility in the Bay Area would likely be the best long term strategy if that is the road we go down. Rachael and I are still pretty hopeful that Mia can be weaned off the vent in a month or two, considering all of the progress she has shown and what she did about 10 days ago we are confident that Mia will continue to surprise everyone.
One thing I do want to clarify a little is that Rachael and I will eventually be taking Mia home with us regardless of whether she is on a vent. However, we want to try as much as possible to wean her if possible while in a facility because it can be done more agressively. We also would like Mia to be a little older, mature and stable before going that route if that is where we are headed. We know that God created Mia and he know's every little detail of her body and that he is in control of the situation. We are praying and hoping that at sometime in Mia's future she will live a life free from a machine.
As for Mia herself today, she seemed to be knocked out pretty well, at least when I saw her. It looks like the additional medicine for her seizures is definitly impacting the amount of breathing she is doing on her own. She is going back and forth between regular breathing and riding the vent. The nurse said that it will probably take a couple of days for her body to adjust to the additional dosage and to expect this back and forth for a bit. She did have another MRI today and the doctor noted that it looked pretty much identical to the first MRI. This in essence is a good thing because at least it confirms the first MRI and it also shows us that there isn't something like a blood clot at play here causing problems.
So things to pray about...
1. Taking out the tube, the test, and most importantly getting the new tube in place.
2. The upcoming surgery and recover time, and the increased risk of infection.
3. Finding facilities in the Bay Area that are well regarded and that our insurance will pay for.
4. Seizure control. If Mia grows out of her seizures than she won't need the additional medicine that seems to knock her out.
5. Time and timing... There is a lot of stuff that might have to be planned in a short amount of time.
Thanks again for all of your thoughts and prayers. Rachael and I are feeling much more relieved now that we have some sort of long term strategy that seems to be developing. It isn't easy trusting in the Lord and waiting on him but Mia has shown us over and over that she is a fighter and we know that God is watching over her every moment.
The main part of the discussion revolved around where Mia was at and what phase the doctors felt she is in. All three of them felt that at this point she was in a steady state mode or put in better words she is no longer improving dramatically like we have seen over the past couple of weeks. They all feel that at this point, it will be best to go ahead and put the trache in so that we can start to stimulate Mia and be more active with her. The general feeling is that Mia will likely be on the vent for at least another month or two and it would not be good to continue her on the breathing tube where she can't be handled.
Rachael and I agreed and said that we were fine with the trache and the feeding tube since that looks like it will be easier for everyone involved. The issue is the current breathing tube that Mia has is likely full of bacteria and the doctors would like to replace this tube a couple of days before the trache surgery just to insure that the bacteria can't cause any problems. During the replacing of the breathing tube, Dr. Parks the lung doctor and Dr. Piroozi felt that it would be good to test her to see what Mia is capable of. They want to pull the breathing tube out and see what she does and for how long she will do it. The general consensous is that she will likely fail fairly quickly but at least it will give us all an idea of what she is capable of.
The complication to all of this is, Mia was pretty difficult to get the breathing tube in the first place. If she hadn't been so difficult in the first place they probably would have changed out the tube a couple of weeks ago. This leaves us all in a tough spot because we have to balance the need for knowing what Mia is capable of with her long term safety as well. There is some concern that there might be trouble in getting the tube back into Mia in a timely fashion and the effects could be long lasting.
If I had to guess the doctors long term opinion they don't believe that Mia will be impossible to be weaned off of the ventilator but they feel it is going to take a lot longer than a month or two. If this is the case than we are now playing into this timeframe of how long can we keep her at the hospital and what do we do afterward?
Doctor Parks told us that in Nevada there really isn't the infastructure in place that would be able to take Mia in her current condition. Given her instability on a day to day basis Rachael and I would have a lot of concern of trying to take her home at this point. We did bring up the fact that we would be looking into a longer term care facility for Mia if she could no longer stay in the hospital. It seemed like the general feeling was looking for such a facility in the Bay Area would likely be the best long term strategy if that is the road we go down. Rachael and I are still pretty hopeful that Mia can be weaned off the vent in a month or two, considering all of the progress she has shown and what she did about 10 days ago we are confident that Mia will continue to surprise everyone.
One thing I do want to clarify a little is that Rachael and I will eventually be taking Mia home with us regardless of whether she is on a vent. However, we want to try as much as possible to wean her if possible while in a facility because it can be done more agressively. We also would like Mia to be a little older, mature and stable before going that route if that is where we are headed. We know that God created Mia and he know's every little detail of her body and that he is in control of the situation. We are praying and hoping that at sometime in Mia's future she will live a life free from a machine.
As for Mia herself today, she seemed to be knocked out pretty well, at least when I saw her. It looks like the additional medicine for her seizures is definitly impacting the amount of breathing she is doing on her own. She is going back and forth between regular breathing and riding the vent. The nurse said that it will probably take a couple of days for her body to adjust to the additional dosage and to expect this back and forth for a bit. She did have another MRI today and the doctor noted that it looked pretty much identical to the first MRI. This in essence is a good thing because at least it confirms the first MRI and it also shows us that there isn't something like a blood clot at play here causing problems.
So things to pray about...
1. Taking out the tube, the test, and most importantly getting the new tube in place.
2. The upcoming surgery and recover time, and the increased risk of infection.
3. Finding facilities in the Bay Area that are well regarded and that our insurance will pay for.
4. Seizure control. If Mia grows out of her seizures than she won't need the additional medicine that seems to knock her out.
5. Time and timing... There is a lot of stuff that might have to be planned in a short amount of time.
Thanks again for all of your thoughts and prayers. Rachael and I are feeling much more relieved now that we have some sort of long term strategy that seems to be developing. It isn't easy trusting in the Lord and waiting on him but Mia has shown us over and over that she is a fighter and we know that God is watching over her every moment.
Wednesday, March 11, 2009
Maybe an explanation...
Hi Everybody,
This week has been interesting and hard because Robert has gone back to work, so we head to the hospital to visit Mia around 4pm. It's hard only having about 2 1/2 hours to visit with her - and this time change doesn't help!! It always feels like we have more time than we actually do because it's still so sunny outside - it makes the time fly by too quickly! But we are definitely grateful for the time that we are able to spend with her. =)
When we got to Mia's bed yesterday, we noticed that her numbers were great (co2), but her vent settings were up a lot higher than they've been in a long time. Apparently every time she was desating in the past few days, she had been having seizures that nobody realized. So they increased the dose of the Phenobarbital for her body weight and she's doing so much better. But, because of the increase, it's kinda knocked her out, so she's hardly taking any breaths above the vent settings. The doctors and nurses say that it should take her a day or two to get used to it and then she should start picking up again. Pray that she does!
She has an MRI scheduled for sometime tomorrow, then we have our family conference with the doctors and nurses at 3pm tomorrow as well.
It takes so much work to be able to hold Mia (2 nurses to take her out... and put her back in the bed). The NICU has been pretty understaffed as well, so it's even harder to find another nurse to help at any given time. We all know how important it is for babies to be held - especially by their Mommy and Daddy. That skin to skin contact is vital... pray we're able hold Mia on a daily basis and not feel like we're a bother to the nurses. Also, pray that the doctors and nurses will realize just how important this is in a baby's development as well.
Robert flys out to San Jose on Friday morning. Renee is going to pick him up from the airport, then will head up to San Francisco to pick up our new car, then Robert will drive back to Las Vegas on Saturday... then I'll finally have a car!! Pray for safety for him both with the flight and drive back(Robert's car is a 5-speed.... I've driven it once up to Reno, but that's only because I rarely had to change gears... and I'm not confident enough to drive it around town!! Okay... I'm scared to death to drive it around town!) I'm excited... I've wanted a Passat since I was around 16... then a few years ago, we decided we'd love our next car to be a Passat Wagon ... and that's what God has blessed us with!! =)
Trusting God,
Rachael
This week has been interesting and hard because Robert has gone back to work, so we head to the hospital to visit Mia around 4pm. It's hard only having about 2 1/2 hours to visit with her - and this time change doesn't help!! It always feels like we have more time than we actually do because it's still so sunny outside - it makes the time fly by too quickly! But we are definitely grateful for the time that we are able to spend with her. =)
When we got to Mia's bed yesterday, we noticed that her numbers were great (co2), but her vent settings were up a lot higher than they've been in a long time. Apparently every time she was desating in the past few days, she had been having seizures that nobody realized. So they increased the dose of the Phenobarbital for her body weight and she's doing so much better. But, because of the increase, it's kinda knocked her out, so she's hardly taking any breaths above the vent settings. The doctors and nurses say that it should take her a day or two to get used to it and then she should start picking up again. Pray that she does!She has an MRI scheduled for sometime tomorrow, then we have our family conference with the doctors and nurses at 3pm tomorrow as well.
It takes so much work to be able to hold Mia (2 nurses to take her out... and put her back in the bed). The NICU has been pretty understaffed as well, so it's even harder to find another nurse to help at any given time. We all know how important it is for babies to be held - especially by their Mommy and Daddy. That skin to skin contact is vital... pray we're able hold Mia on a daily basis and not feel like we're a bother to the nurses. Also, pray that the doctors and nurses will realize just how important this is in a baby's development as well.Robert flys out to San Jose on Friday morning. Renee is going to pick him up from the airport, then will head up to San Francisco to pick up our new car, then Robert will drive back to Las Vegas on Saturday... then I'll finally have a car!! Pray for safety for him both with the flight and drive back(Robert's car is a 5-speed.... I've driven it once up to Reno, but that's only because I rarely had to change gears... and I'm not confident enough to drive it around town!! Okay... I'm scared to death to drive it around town!) I'm excited... I've wanted a Passat since I was around 16... then a few years ago, we decided we'd love our next car to be a Passat Wagon ... and that's what God has blessed us with!! =)
Trusting God,
Rachael
Monday, March 9, 2009
Some Down, Some Up
Well today was a day that started out pretty bad and looks to have gotten a little better at the end. When we got there, Mia's nurse Patricia said that Mia was desating really bad in the morning. Her conclusion was that the seizure medicine dosage they were giving her was starting to become ineffective for her size. For most of the time we were there Mia was going up and down on a roller coaster and it didn't seem like much would help her stabilize. The doctor then ordered in increase in her seizure medicine and it looked like once it started to kick in that it did the trick and Mia's O2 stats started to be a little more consistent. We had to leave just about the time that she started to stabalize so we won't know until tomorrow if that is really what the issue is.
In a way, we are praying that it was the issue because that would explain a lot of why Mia has had such a poor week. It would make sense because there has been several times this week that Mia started to desat and she is usually pretty stable. It also might explain why she did so well last Saturday but was poor for the rest of the week. Hopefully this was the issue and we can get her back on track with trying to get her off of the ventilator.
With that said, we had a conversation with Dr. Miller today regarding Mia. He is a very nice doctor but is also pretty straight forward. He said that all of the doctors had spoken together and they all feel that it is time that Mia needs to start moving forward. He said that at this point, it would be best to go ahead and have the trache put it in so that she can be handled more comfortably and stimulated in an easier method. His own feeling was that at this point, he doesn't see Mia being weaned off of the ventilator in the short term and that it would be best for everyone to proceed to the next step. We told him that we were fine with a trache if it was going to be easier for everyone involved but that we didn't necesarily want to trache her and then have her sent home right away. We told him that we would want to give her at least a month if not two months to see what she is really capable of on the trache. I think he listened and understood our position and we will have to see how things play out.
Rachael and I are very accepting of the fact that Mia might be on a vent much longer (hopefully not forever) than we had initially hoped and we have strived to make sure the doctors know that we can accept it if thats what it comes too. However, we just want to make sure Mia isn't set on any short time tables. Basically, if she is not weaned after having the trache for two months and being in the NICU then we will go to plan B with Mia. For those of you that aren't familiar, plan B is looking for a long term care facility somewhere hopefully in the Bay Area that we can give her several months of extra care and continued weaning in a facility that is able to handle her special needs. At this moment, given the amount of care that Mia requires and how things change on a day to day basis Rachael and I would be very stressed out trying to take care of her at home. The other issue is that Rachael and I are very limited in the amount of support that our extended family can provide for us here. If we are able to find a facility in the Bay Area then we will be able to lean on the support of both our parents and extended families.
So some continued prayer requests...
1. Pray that the appropriate dosage of seizure medicine can be found that is both effective but doesn't knock Mia out.
2. Pray for wisdom for Rachael and I as we try to balance the timing of putting in the trache.
3. Pray that if we do have to go to plan B that we will be able to find a facility in the Bay Area that will be able to work with Mia and provide the care she needs as well as having the expertise in weaning her off of the vent.
4. Continue to pray for her lungs because every breath from the vent does do damage to her lungs.
That is all I have for now. Thanks again for all of your thoughts and prayers.
Robert
In a way, we are praying that it was the issue because that would explain a lot of why Mia has had such a poor week. It would make sense because there has been several times this week that Mia started to desat and she is usually pretty stable. It also might explain why she did so well last Saturday but was poor for the rest of the week. Hopefully this was the issue and we can get her back on track with trying to get her off of the ventilator.
With that said, we had a conversation with Dr. Miller today regarding Mia. He is a very nice doctor but is also pretty straight forward. He said that all of the doctors had spoken together and they all feel that it is time that Mia needs to start moving forward. He said that at this point, it would be best to go ahead and have the trache put it in so that she can be handled more comfortably and stimulated in an easier method. His own feeling was that at this point, he doesn't see Mia being weaned off of the ventilator in the short term and that it would be best for everyone to proceed to the next step. We told him that we were fine with a trache if it was going to be easier for everyone involved but that we didn't necesarily want to trache her and then have her sent home right away. We told him that we would want to give her at least a month if not two months to see what she is really capable of on the trache. I think he listened and understood our position and we will have to see how things play out.
Rachael and I are very accepting of the fact that Mia might be on a vent much longer (hopefully not forever) than we had initially hoped and we have strived to make sure the doctors know that we can accept it if thats what it comes too. However, we just want to make sure Mia isn't set on any short time tables. Basically, if she is not weaned after having the trache for two months and being in the NICU then we will go to plan B with Mia. For those of you that aren't familiar, plan B is looking for a long term care facility somewhere hopefully in the Bay Area that we can give her several months of extra care and continued weaning in a facility that is able to handle her special needs. At this moment, given the amount of care that Mia requires and how things change on a day to day basis Rachael and I would be very stressed out trying to take care of her at home. The other issue is that Rachael and I are very limited in the amount of support that our extended family can provide for us here. If we are able to find a facility in the Bay Area then we will be able to lean on the support of both our parents and extended families.
So some continued prayer requests...
1. Pray that the appropriate dosage of seizure medicine can be found that is both effective but doesn't knock Mia out.
2. Pray for wisdom for Rachael and I as we try to balance the timing of putting in the trache.
3. Pray that if we do have to go to plan B that we will be able to find a facility in the Bay Area that will be able to work with Mia and provide the care she needs as well as having the expertise in weaning her off of the vent.
4. Continue to pray for her lungs because every breath from the vent does do damage to her lungs.
That is all I have for now. Thanks again for all of your thoughts and prayers.
Robert
Saturday, March 7, 2009
More Updates
Dear friends and family.
Thank you all for all of your continued thoughts and prayers. Sorry about the somewhat erratic updates for the past couple of days. Our schedule has been a little off. Also, thank you all that have been leaving comments and words of encouragement. Rachael and I read every single comment that is left and they have been very uplifting. I wish we had more time to be able to respond back to those of you that are writing but at the moment it's just to much work for us.
Mia has had another good day. They have her O2 settings back at 21% which is really good and they also have her vent breathing rate down to 23 breaths per minute. Mia is usually breathing above the vent anywhere between 30 and 60 breaths per minute depending on what she is doing. Her CO2 levels where also in the 40s to 50s most of the day with an occasional 60 range. She did have some tummy time today as well but she could not stay there long because she started to desat a little. One of the things we found out today is that the breathing tube had inched it's way a little to far inside Mia and it was causing some issues. They have since pulled it out and I guess she is doing better for it.
Rachael and I got the chance to talk with Dr. Piroozi today. It's been about a week since we have seen him because he has been at other hospitals this week. He is still very positive on being able to ween Mia off of the vent and he really thinks that it should be possible to do it. We asked him what he thought about the trach and he said that at this time, it's better that we do not do the trach. As long as Mia is on the breathing tube the hospital is unable to send Mia home prematurely. If we do put the trache in, then the hospital would be able to discharge her when they felt it was appropriate. We are glad to have this advice because even though we think the trache would be much more comfortable for Mia and even help with the weening, we would be concerned about Mia being sent home before she is ready.
Of course the delay with the trach means that Mia will continue to be on the breathing tube. The problem is, she is currently growing out of the breathing tube she has and at some point will need a larger size. Ordinarily this would be a trivial thing but since Mia was very hard to intubate in the first place we haven't found anyone at the hospital that is volunteering to do it a second time. We spoke with Dr. Piroozi about this and he said that it would be best to wait as long as we can on the current tube and when they need to replace it to use that time as a chance to test her. He said that we could take the tube out and put her on oxygen through the nose and see how she does for a little bit. If she picks things up than we won't need another tube. If she doesn't do well then we can put the new tube size in and continue on from there. It's a pretty bold move but it might be worth the risk as it will really allow us to see what Mia does on her own and see if she's really capable of sustaining herself at this point. Based on what we saw on Saturday my gut instinct is that she probably has a pretty good chance of being able to do it.
On another note... Rachael and I took Mercedes out for the day today. We haven't gotten to spend a lot of time with her and we felt that she really needed some time with us. So we took her to Target to let her pick out her first soccer ball! Mercedes was very adamant that she had to have the blue soccer ball. As we were walking out of Target Mercedes ran into a little girl that was giving away roses. She had one left and when Mercedes saw it she loudly proclaimed "flower!". The little girl was very nice in giving her last rose to Mercedes!
We then took Mercedes to the park so we could play with her new ball. At first Mercedes wanted to go to the basketball courts with her ball but Rachael and I convinced her to take the ball out to the fields. When we finally got to a place to kick the ball we put it on the ground for Mercedes. Of course, she was all confused and didn't want her ball to get dirty so she kept on picking it up. Rachael and I had to kick the ball a couple of times before she got the idea that you are supposed to kick a soccer ball! She then had lots
of fun running after the ball and kicking it. When we got to a small little hill she had a blast carrying the ball to the top and then letting it go and watching it slide down the hill. Mercedes had a lot of fun and wasn't very happy when we had to leave the park...
On another note... We might finally have a new car! Or at least, we have a car located and we think we have a deal almost worked out. We are now just haggling over the last couple of hundred dollars. Of course, the car just happens to be in San Francisco so I'm going to have to fly out sometime this week and pick it up. Boy... I really hate the drive from the Bay Area to Las Vegas...
For prayer requests here are a couple of things you can keep praying for.
Mia's Lungs: Being on a ventilator for a long time can cause damage to the lungs. Pray that Mia will be able to stand up to the damage and that she won't have any long term affects because of it.
Doctors Meeting: All of Mia's doctors will be meeting on Monday to discuss what they feel is going on with her. From that meeting, they will have a family meeting with us to discuss what the long term plan for Mia will be. Pray that the doctors will all be willing to give Mia the time that she deserves so she can really show us what she is capable of.
Mercedes: Mercedes normal schedule has been turned upside down lately. She's been coping pretty well with it but recently we are seeing that it is catching up to her. Pray that we will be able to figure out some sort of reasonable schedule that will allow her to have the naps in the afternoon that she needs.
That's what I have for now. Thanks again for all of your thoughts and prayers.
Robert
Thank you all for all of your continued thoughts and prayers. Sorry about the somewhat erratic updates for the past couple of days. Our schedule has been a little off. Also, thank you all that have been leaving comments and words of encouragement. Rachael and I read every single comment that is left and they have been very uplifting. I wish we had more time to be able to respond back to those of you that are writing but at the moment it's just to much work for us.
Mia has had another good day. They have her O2 settings back at 21% which is really good and they also have her vent breathing rate down to 23 breaths per minute. Mia is usually breathing above the vent anywhere between 30 and 60 breaths per minute depending on what she is doing. Her CO2 levels where also in the 40s to 50s most of the day with an occasional 60 range. She did have some tummy time today as well but she could not stay there long because she started to desat a little. One of the things we found out today is that the breathing tube had inched it's way a little to far inside Mia and it was causing some issues. They have since pulled it out and I guess she is doing better for it.
Rachael and I got the chance to talk with Dr. Piroozi today. It's been about a week since we have seen him because he has been at other hospitals this week. He is still very positive on being able to ween Mia off of the vent and he really thinks that it should be possible to do it. We asked him what he thought about the trach and he said that at this time, it's better that we do not do the trach. As long as Mia is on the breathing tube the hospital is unable to send Mia home prematurely. If we do put the trache in, then the hospital would be able to discharge her when they felt it was appropriate. We are glad to have this advice because even though we think the trache would be much more comfortable for Mia and even help with the weening, we would be concerned about Mia being sent home before she is ready.
Of course the delay with the trach means that Mia will continue to be on the breathing tube. The problem is, she is currently growing out of the breathing tube she has and at some point will need a larger size. Ordinarily this would be a trivial thing but since Mia was very hard to intubate in the first place we haven't found anyone at the hospital that is volunteering to do it a second time. We spoke with Dr. Piroozi about this and he said that it would be best to wait as long as we can on the current tube and when they need to replace it to use that time as a chance to test her. He said that we could take the tube out and put her on oxygen through the nose and see how she does for a little bit. If she picks things up than we won't need another tube. If she doesn't do well then we can put the new tube size in and continue on from there. It's a pretty bold move but it might be worth the risk as it will really allow us to see what Mia does on her own and see if she's really capable of sustaining herself at this point. Based on what we saw on Saturday my gut instinct is that she probably has a pretty good chance of being able to do it.
On another note... Rachael and I took Mercedes out for the day today. We haven't gotten to spend a lot of time with her and we felt that she really needed some time with us. So we took her to Target to let her pick out her first soccer ball! Mercedes was very adamant that she had to have the blue soccer ball. As we were walking out of Target Mercedes ran into a little girl that was giving away roses. She had one left and when Mercedes saw it she loudly proclaimed "flower!". The little girl was very nice in giving her last rose to Mercedes!
We then took Mercedes to the park so we could play with her new ball. At first Mercedes wanted to go to the basketball courts with her ball but Rachael and I convinced her to take the ball out to the fields. When we finally got to a place to kick the ball we put it on the ground for Mercedes. Of course, she was all confused and didn't want her ball to get dirty so she kept on picking it up. Rachael and I had to kick the ball a couple of times before she got the idea that you are supposed to kick a soccer ball! She then had lots
of fun running after the ball and kicking it. When we got to a small little hill she had a blast carrying the ball to the top and then letting it go and watching it slide down the hill. Mercedes had a lot of fun and wasn't very happy when we had to leave the park...On another note... We might finally have a new car! Or at least, we have a car located and we think we have a deal almost worked out. We are now just haggling over the last couple of hundred dollars. Of course, the car just happens to be in San Francisco so I'm going to have to fly out sometime this week and pick it up. Boy... I really hate the drive from the Bay Area to Las Vegas...
For prayer requests here are a couple of things you can keep praying for.
Mia's Lungs: Being on a ventilator for a long time can cause damage to the lungs. Pray that Mia will be able to stand up to the damage and that she won't have any long term affects because of it.
Doctors Meeting: All of Mia's doctors will be meeting on Monday to discuss what they feel is going on with her. From that meeting, they will have a family meeting with us to discuss what the long term plan for Mia will be. Pray that the doctors will all be willing to give Mia the time that she deserves so she can really show us what she is capable of.
Mercedes: Mercedes normal schedule has been turned upside down lately. She's been coping pretty well with it but recently we are seeing that it is catching up to her. Pray that we will be able to figure out some sort of reasonable schedule that will allow her to have the naps in the afternoon that she needs.
That's what I have for now. Thanks again for all of your thoughts and prayers.
Robert
Thursday, March 5, 2009
Learning More (from yesterday March 5th)
Today was a down and up and down and up day. When we got to the hospital Mia's nurse told us that she was doing pretty good all morning long. However, while we were talking with her we saw that Mia was starting to have issues with her CO2 and her oxygen. Rachael and I went out of the NICU for a little while but when we came back we saw that Mia was doing MUCH better. It turns out that Mia's nurse had adjusted and re-taped her breathing tube and almost instantly Mia had gone from just okay to doing very well.
The lesson learned here was that Mia might be affected by the breathing tube more than we originally thought. At this point Rachael and I are getting close to a cross road. We have been thinking about putting the trach in Mia so that we could be much more active in holding her and stimulating her. Our concern though has been that we don't want the trach to go in it makes it that much easier for the doctors to say that she is capable of going home. We want to make sure that they would give her adequate time after the surgery to see if she progresses enough to be weened off of the vent.
One good thing we learned today is that Mia's muscle biopsy came back normal. That is a huge relief because one of the conditions being tested for was a game over scenario. That is a huge answer to prayer that Mia does not have those issues. In a way, it's kind of ironic that everything the doctors are testing for on Mia always seem to come back normal. Rachael and I have both been wondering if they are barking up the wrong tree and not just looking at the simplest explanation that the hydrocephalus and the seizures have slowed down her development. At this moment only God knows what Mia's condition is.
So a lot of you might be wondering where all of this leads and what our thoughts are with Mia's long term prospects, especially compared to where we were three weeks ago. Let me start by trying to clarify where we were then and where we are now. Three weeks ago when Rachael and I had come to a point that we felt we might have to let Mia go there were several factors involved. The first factor was the current prognosis that Mia would never be able to breath on her own because she could not detect the CO2 in her body. The second factor was that at that point, Mia had been riding the ventilator almost non-stop for almost two weeks with barely any breathing on her own. Third, Mia appeared to be getting worse for a while and we didn't want to prolong her suffering any longer. To Rachael and I, our prayer was that God would either heal Mia or that he would take her from us. We did not want to have to make the choice to let her go. During those couple of days it looked like Mia was going to go on her own and that we had our answer to prayer.
However, God has a funny way of putting you on the right track when you are on the wrong one. Rachael and I both felt that Mia only had a couple of days left in her but one morning while I was sitting in front of Mia's bed and praying something happened. A man that we had never seen before happened to walk in and look at Mia and while he was there he asked me if I had any questions. I remember looking at him, not recognizing him, figuring he was just a technician and telling no I did not have any questions and we knew where things stood (as far as having to let her go). After I said this, this man stood by Mia's bed for a couple of minutes and just watched her and at this point, God stepped in and changed the game.
I suddenly got this thought in my head that I should get up and talk to this person so thats what I did. I got up and started off the conversation by asking this man what he thought of the apnea tests that they were doing on Mia. What this man said next changed everything. He said that in his mind, the apnea test wasn't a good test for Mia and that it wasn't proving anything for her. He said that out of the 15 babies on ventilators in the hospital at that moment he could give the apnea test to all of them and probably 12 of the 15 would fail. He encouraged us that what Mia needed was time to build up her strength and that we should give it a few weeks and see what she did. If you haven't guessed who this man is by now, it was our very favorite Doctor Piroozi. If it was not for him Mia might not be here at this moment.
The other part to this story is that as generous and patient as he is, even he has his limits and realizing that sometimes you have come to the end of the line. One of things I don't think we mentioned is that we heard from one of the nurses that before Mia started taking breaths on her own consistently that even Doctor Piroozi was within a couple of days of telling Rachael and I that we were at the end of the line. Thankfully he was willing to give it more time even when a lot of his co-workers had decided that there was nothing that could be done. Through his direction and patience, we have seen Mia go from not breathing on her own at all to almost always breathing on her own (with assistance from the vent of course).
Now that Mia has started to initiate breaths on her own and we have seen that she is capable of breathing off of the vent, the game has completely changed. We have seen what she has been capable of doing and how much she has progressed in just a few short weeks and we feel that we need to trust that she will continue to improve with more time. Now, we still do not know if Mia will ever be able to be off of a vent 24 hours a day but we have seen her do it for 1 hour and we think there is a lot more in her if she is given the time.
Now many of you might be wondering why Rachael and I would not want to take Mia home on a ventilator at this stage but would rather put her in a facility. The first issue is the level of care that Mia needs and the equipment we would need to have. It's not that Rachael are afraid of taking on the task, but rather we would be fearful that one simple mistake or power outage and we could easily lose Mia just by an accident. In essence we would be living in continual fear day by day and it would wear us down to the point of exhaustion. The other factor is that if Mia were to come home, it would be much more difficult to try to ween her off of the vent because this can only done with the supervision of doctors that know what they are doing.
So, Rachael and I are trying to buy as much time at the hospital as we can for Mia. The more time in the hospital, the stronger she will get and hopefully the better the prospects of weening her off of the vent. If we run out of time at the hospital, Rachael and I are going to start looking for long term facilities that specialize in weening babies off of vents and that would be able to take care of Mia without the time constraints of the hospital.
Now, we still don't know where this is all going. Mia does have her up days and her down days. Rachael and I know that anything can happen at any time and Mia could very easily start going down hill and not coming back. However, given what we have seen so far we are hopeful and praying that one day, Mia will be able to come home free from a life on a machine.
I hope the above information will help all of you to understand where we have been and where we feel that we are headed. Thank you to all of you for your continued prayer and support. Rachael and I have been carried through this by our faith in Jesus and knowing that there are so many people lifting Mia up before him.
Robert
The lesson learned here was that Mia might be affected by the breathing tube more than we originally thought. At this point Rachael and I are getting close to a cross road. We have been thinking about putting the trach in Mia so that we could be much more active in holding her and stimulating her. Our concern though has been that we don't want the trach to go in it makes it that much easier for the doctors to say that she is capable of going home. We want to make sure that they would give her adequate time after the surgery to see if she progresses enough to be weened off of the vent.
One good thing we learned today is that Mia's muscle biopsy came back normal. That is a huge relief because one of the conditions being tested for was a game over scenario. That is a huge answer to prayer that Mia does not have those issues. In a way, it's kind of ironic that everything the doctors are testing for on Mia always seem to come back normal. Rachael and I have both been wondering if they are barking up the wrong tree and not just looking at the simplest explanation that the hydrocephalus and the seizures have slowed down her development. At this moment only God knows what Mia's condition is.
So a lot of you might be wondering where all of this leads and what our thoughts are with Mia's long term prospects, especially compared to where we were three weeks ago. Let me start by trying to clarify where we were then and where we are now. Three weeks ago when Rachael and I had come to a point that we felt we might have to let Mia go there were several factors involved. The first factor was the current prognosis that Mia would never be able to breath on her own because she could not detect the CO2 in her body. The second factor was that at that point, Mia had been riding the ventilator almost non-stop for almost two weeks with barely any breathing on her own. Third, Mia appeared to be getting worse for a while and we didn't want to prolong her suffering any longer. To Rachael and I, our prayer was that God would either heal Mia or that he would take her from us. We did not want to have to make the choice to let her go. During those couple of days it looked like Mia was going to go on her own and that we had our answer to prayer.
However, God has a funny way of putting you on the right track when you are on the wrong one. Rachael and I both felt that Mia only had a couple of days left in her but one morning while I was sitting in front of Mia's bed and praying something happened. A man that we had never seen before happened to walk in and look at Mia and while he was there he asked me if I had any questions. I remember looking at him, not recognizing him, figuring he was just a technician and telling no I did not have any questions and we knew where things stood (as far as having to let her go). After I said this, this man stood by Mia's bed for a couple of minutes and just watched her and at this point, God stepped in and changed the game.
I suddenly got this thought in my head that I should get up and talk to this person so thats what I did. I got up and started off the conversation by asking this man what he thought of the apnea tests that they were doing on Mia. What this man said next changed everything. He said that in his mind, the apnea test wasn't a good test for Mia and that it wasn't proving anything for her. He said that out of the 15 babies on ventilators in the hospital at that moment he could give the apnea test to all of them and probably 12 of the 15 would fail. He encouraged us that what Mia needed was time to build up her strength and that we should give it a few weeks and see what she did. If you haven't guessed who this man is by now, it was our very favorite Doctor Piroozi. If it was not for him Mia might not be here at this moment.
The other part to this story is that as generous and patient as he is, even he has his limits and realizing that sometimes you have come to the end of the line. One of things I don't think we mentioned is that we heard from one of the nurses that before Mia started taking breaths on her own consistently that even Doctor Piroozi was within a couple of days of telling Rachael and I that we were at the end of the line. Thankfully he was willing to give it more time even when a lot of his co-workers had decided that there was nothing that could be done. Through his direction and patience, we have seen Mia go from not breathing on her own at all to almost always breathing on her own (with assistance from the vent of course).
Now that Mia has started to initiate breaths on her own and we have seen that she is capable of breathing off of the vent, the game has completely changed. We have seen what she has been capable of doing and how much she has progressed in just a few short weeks and we feel that we need to trust that she will continue to improve with more time. Now, we still do not know if Mia will ever be able to be off of a vent 24 hours a day but we have seen her do it for 1 hour and we think there is a lot more in her if she is given the time.
Now many of you might be wondering why Rachael and I would not want to take Mia home on a ventilator at this stage but would rather put her in a facility. The first issue is the level of care that Mia needs and the equipment we would need to have. It's not that Rachael are afraid of taking on the task, but rather we would be fearful that one simple mistake or power outage and we could easily lose Mia just by an accident. In essence we would be living in continual fear day by day and it would wear us down to the point of exhaustion. The other factor is that if Mia were to come home, it would be much more difficult to try to ween her off of the vent because this can only done with the supervision of doctors that know what they are doing.
So, Rachael and I are trying to buy as much time at the hospital as we can for Mia. The more time in the hospital, the stronger she will get and hopefully the better the prospects of weening her off of the vent. If we run out of time at the hospital, Rachael and I are going to start looking for long term facilities that specialize in weening babies off of vents and that would be able to take care of Mia without the time constraints of the hospital.
Now, we still don't know where this is all going. Mia does have her up days and her down days. Rachael and I know that anything can happen at any time and Mia could very easily start going down hill and not coming back. However, given what we have seen so far we are hopeful and praying that one day, Mia will be able to come home free from a life on a machine.
I hope the above information will help all of you to understand where we have been and where we feel that we are headed. Thank you to all of you for your continued prayer and support. Rachael and I have been carried through this by our faith in Jesus and knowing that there are so many people lifting Mia up before him.
Robert
Pictures of our beautiful Mia from yesterday...
I was finally healthy enough to visit with our precious baby Mia yesterday for the first time since Saturday. Not seeing my baby for 2 days was definitely hard!!
Yesterday Mia turned 1 month old! What a milestone! She also sucked on a pacifier for the very first time!! That's HUGE! On Friday, nurse Mercedes noticed Mia trying to suck on her tubes that are in her mouth, so she got a paci, but I don't think Mia ever sucked on it then. Karla gave us one yesterday and asked us to try to encourage Mia to suck on it whenever we notice she's awake, so I tried it and she sucked on it about 6 times! Pray that Mia will learn how to suck and swallow so she'll be able to eventually nurse or bottle feed!
God bless you all... thank you so much for your prayers for our family and especially Mia!
Always,
Rachael
Wednesday, March 4, 2009
Slow and Steady
Hi folks, sorry about not getting an update in earlier today. Mia is doing fine right now. They are still working to wean her back down on the ventilator. She currently is at 28 breaths per minute and taking 24% oxygen. It is taking a lot longer to get her back down to where she was on Saturday so she must have really been wiped out.
We didn't talk to any of the doctors today but Mia's nurse Karla was able to tell us that one of the conditions that they were testing Mia for came back negative. This is a very good thing and we are really relieved to hear that. We are still waiting to hear back on the muscle biopsy. Apparently they have gotten the results in today but they did not have a chance to look at it and so they could not tell us the results. I have been on pins and needles all day waiting for these results.
Many people have been asking about my work situation so I thought I should let you all know that my boss Major Keith Turner has been phenominal in supporting us through this time. It has been such a relief to not have to worry about work during this time of stress. I also want to thank my co-worker Lt Christian Morgan who has been taking care of everything without me. I can't thank my co-workers enough for giving me so much leeway and time off to deal with this situation As great as it has been to not have to worry about work I feel that it is time for me to try to get engaged back into work so starting Monday I'll be going back to work up at Creech.
Some continued Prayer requests.
Mia's Lungs: She has had some issues with them partially deflating periodically. In a way this is sort of a blessing in disguise. This means that Mia has not been anble to use her full lung capacity to keep her saturated. As her lungs recover it will only make it easier for her to keep saturated.
Test Results: That we will hear positive news as various conditions are ruled out. Some of the conditions being tested for are really scary. We are praying that Mia will not have any of these conditions.
Car: We are still looking for a car and dealing with our insurance company. Rachael and I at this point are going to try to be patient and getting something that will really work well for us. Hopefully we will be able to work the logistics of me working next week and Rachael being at the hospital and doing this with one car.
Health: We all are taking our turns getting sick. The stress has been taking its toll on our bodies.
Thanks again for all your thoughts and prayers. Rachael has some new pictures that hopefully we will get uploaded in the morning.
We didn't talk to any of the doctors today but Mia's nurse Karla was able to tell us that one of the conditions that they were testing Mia for came back negative. This is a very good thing and we are really relieved to hear that. We are still waiting to hear back on the muscle biopsy. Apparently they have gotten the results in today but they did not have a chance to look at it and so they could not tell us the results. I have been on pins and needles all day waiting for these results.
Many people have been asking about my work situation so I thought I should let you all know that my boss Major Keith Turner has been phenominal in supporting us through this time. It has been such a relief to not have to worry about work during this time of stress. I also want to thank my co-worker Lt Christian Morgan who has been taking care of everything without me. I can't thank my co-workers enough for giving me so much leeway and time off to deal with this situation As great as it has been to not have to worry about work I feel that it is time for me to try to get engaged back into work so starting Monday I'll be going back to work up at Creech.
Some continued Prayer requests.
Mia's Lungs: She has had some issues with them partially deflating periodically. In a way this is sort of a blessing in disguise. This means that Mia has not been anble to use her full lung capacity to keep her saturated. As her lungs recover it will only make it easier for her to keep saturated.
Test Results: That we will hear positive news as various conditions are ruled out. Some of the conditions being tested for are really scary. We are praying that Mia will not have any of these conditions.
Car: We are still looking for a car and dealing with our insurance company. Rachael and I at this point are going to try to be patient and getting something that will really work well for us. Hopefully we will be able to work the logistics of me working next week and Rachael being at the hospital and doing this with one car.
Health: We all are taking our turns getting sick. The stress has been taking its toll on our bodies.
Thanks again for all your thoughts and prayers. Rachael has some new pictures that hopefully we will get uploaded in the morning.
Tuesday, March 3, 2009
Quick Update
Hi all, just wanted to let you know that Mia seems to be getting back on track. She has been steadily improving since yesterday. She's still not back to where she was on Saturday but I'm guessing by tomorrow she should be about there. One good thing is, I spoke with Carla the nurse this morning and she did say that Mia is still continuing to initiate most of the breaths like she was before.
We will add a more detailed update tonight when we get back from the hospital.
Robert
We will add a more detailed update tonight when we get back from the hospital.
Robert
Monday, March 2, 2009
Two steps forward, one step back...
Hi all, today I got the chance to go in by myself today and be with Mia. It looks like yesterday and the first half of today have been kind of rough on her. For whatever reason, Mia's blood CO2 has been higher than it should be. In order to get it back down to where it should be they had to increase the ventilator settings quite a bit to get her stabilized. When I left the hospital today around 2pm Mia finally had a good CO2 reading and seemed to be doing better.
Since we were not there yesterday it's hard to say if there was anything significant that changed with Mia that started this. She did do a couple of sessions off of the ventilator yesterday but we were not around to see how they went. The doctors have decided to let Mia rest and stabilize before they try taking her off of the vent again for short periods.
One thing that Rachael and I have noticed is that it would seem that Mia is getting some gas in her stomach. We are wondering if this is causing more pressure on her lungs and making it uncomfortable for her to take deep breaths. The nurse Mercedes would vent the air out of her stomach after every feeding but we are not sure if this information got relayed to the other nurses overseeing her care.
One praise in all of this is that it would appear that Mia still has the drive to breath. It's hard to tell at the moment because the ventilator was turned up so much but it does not seem like she has relapsed on that aspect of it. Hopefully when they turn the vent settings back down she will pick up and do what she was doing before yesterday.
So today was one of those days that we sort of side stepped and didn't move forward much. Mia will have another CO2 measurement taken tonight and we are hopeful that it will be within acceptable limits. They will be taking this measurement around 8pm so I will add a short update sometime around then to let you all know what the result was.
Please continue to pray for Mia's strength. Each time her CO2 levels get out of whack it usually takes her a day or two to stabilize before she starts making more progress.
Robert
Rest Day
Hi all, Today was actually a down day for us. Rachael and Mercedes have a cold and I thought I was getting one myself. We spoke with Mia's nurse today over the phone and she advised that it would be best for us to get some rest and get over the colds. So today is the first day since Mia was born that we were unable to see her. In a way it was nice not being at the hospital all day but at the same time it was very hard not being there next to Mia and watching what she is doing. The nurse did say that she is doing well and that she is making steady progress though so at least we had a good report for the day.
One question that was asked was in regards to Mia's jaw. When she was first born, the nurse had a very difficult time intubating Mia because she was sizing and because her jaw was locked tight. One of the prayer requests we have been asking for is that her jaw would loosen up. In regards to the question, we have seen that it has loosened up quite a bit. Mia is able to open and close her jaw as she pleases (especially when the nurse is suctioning her mouth out). However, there is still some question to her jaw and if she is able to open it completely. We have only seen it open about halfway (just before it unhinges?) but nothing really wide yet. The nurses and doctor also still feel that it is tight although they have not been able to say if it is a physiological thing or a neurological issue. Rachael and I are just hopeful it s because of the feeding tube but we know that it could be for any number of reasons.
Thats about all I have for now. If anyone else has any questions please feel free to ask. This blog is currently the only way we are sending out information and we want to make sure that everyone knows what is going on. Thanks again for all of your prayer and support.
Robert
Last thing... sorry about the blog being unaccessible off and on today. I thing blogger.com has been having some issues because sometimes our blog page will load fine and other times it does not. Hopefully it will be resolved shortly.
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