One Day At A Time

Cami hospitalized again

2011-09-07T13:33:00.000-07:00

Cami has been hospitalized again since last Thursday night. (actually Friday morning) Thankfully we had a night nurse that night. We knew she was coming down with something because her lungs were not clear. We were trying to wait until my day nurse came on at 8am so that I had her to help with the kids. About 4am I hear the nurse screaming. Camryn's room is at the other end of the house. When I got to her room, she was purple (literally) she was satting at 70. I called 911, Kevin grabbed her oxygen, we started her on o2, kevin went to the top of the property to wait for ems, so that they would not pass our house. Ems got there along with 2 Police officers. We were bagging her when they got there, they couldn't stabilize her. I jumped in the ambulance with her and we were off. She was being bagged all the way. Once we got to Dell ER they had about 30 people waiting for her. There was not enough room for me to be next to her. So, I had to stand by the doors. She was admitted to PICU once she stabilized. They changed her trach to be sure she didn't have a blockage, they don't know what happened. They believe it is a neurological issue. Basically her brain just didn't tell the body to breathe. She is a lot better now, but of course we are still freaked out. She turned 1 year on August 18th. She rolls around the house, she gets physical therapy 2 times a week and is about to start occupational & speech therapy. Will try to update more later.

Hello

2011-05-19T12:35:00.001-07:00

I want to thank all of you for all of your support & love. Our life is crazy right now, but it is a good crazy. Cami is flourishing at home. The trach makes it to where you cannot hear her cry of make any noise. I have been praying that she would be able to make noise and guess what??? She coos around her trach- I can actually hear her!! It is truly an answered prayer. I have called her ENT Dr to schedule another procedure to stretch her windpipe so that eventually we can hopefully get the trach out of her. I am waiting now to get the day & time. I will let you all know when it is. As soon as I can learn to upload the video's of her "talking" to me I will put it here for all of you to see. I haven't meant to be a stranger, but we don't have internet at home and my phone doesn't show everything. So, I see today that you all were asking me questions. I did not get them when they were sent. So, I apologize for not getting back to you, I just do not have a way to unless I go to my mom's. I can text though- so I have been able to respond to text mssg's. We are just having a hard time financially right now with everything that has gone on. I had a stroke when Cody was 3 months old. So, I quit working to be a stay at home mom. Like most people we rely on one income. Kevin makes too much for any help financially. I found out that the cloth roll that Camryn needed was a 3 month supply. That is why it was so much. When Cami was released from the hospital I was given 3 company names that I could order her supplies from. Most are covered my medicaid (thank you Jesus) But, as I am finding out- not all is covered. We will get her first SSI check on June 1st. It will be $250.00 a month. That will definitely help with the things that are not covered by medicaid. All in all Cami is doing great though! Her lazy eye is getting a bit stronger as well. We put a patch on her good eye for 2 hours a day. She definitely has bad vision in her lazy eye. When she is wearing her eye patch, she reaches for toys or hands or whatever is there but her depth perception is off. She usually misses the toy. However when she first came home and had the eye patch on she couldn't see anything. she didn't even reach for it. So, now that she is actually able to see something in that eye- she is getting better daily. Cami is such a happy, laid back baby. When we first got her home she didn't want to be touched. She was happy laying in her crib or bouncer or whatever, However once you picked her up she would start crying and not stop until you put her back down. She likes to be held now though :O) Between family and her nurses she gets held quite a bit. Her neck is getting stronger as well! We have been working with her and her physical therapist and it is paying off. (her phys therapist has only had 1 session with her so far) She can turn on both of her sides and has turned completely over by herself 1 time!! She has 2 top teeth coming in, but they are coming in very slowly. Anyway, I have to go Cami is at the house with the nurse and I have to get back there. Cody had an appt this morning so we left to go to Austin. I try not to take Cami to the Doctor's office because I don't want her sick again. Will take more pictures with my phone and send them to my Aunt (Brenda Upton Crowder) and ask her to post them so that you can see her) She weighs about 16 pounds now and is a chunky little girl. I apologize for asking for financial help. You have all helped so much. Someone wanted my mailing address. My address is PO Box 212, Dale, Tx 78616. I read where someone was a little angry with me for asking for help. I hated to do it, but didn't know what else to do. My mom & stepdad are having a hard time financially due to him being laid off. So, they now depend on one income. If they had the money they would help but they do not. Well, have to go. I will read my mssg's when I can come back and use the internet at my mom's. My phone number (if you want to text) is 512-216-0752. I am trying to get it back on now. I haven't had the money to pay the bill. However, it will still receive text mssg's for now) Will update when I can. I did take the number for supplies to get it cheaper, I ordered 2 rolls so that will do 2 months worth. Thank you all again for everything.

Easter & More

2011-04-27T15:05:00.000-07:00

We had a wonderful Easter this year. It was great to have my kids together and out of the hospital! My 2 nephews, my niece, Cody & Cami were all together for Easter and it was fun for all. Cody even hunted Easter eggs. My mom & step dad bought Easter baskets for the kids and stuffed them full of candy & toys for them. Cami got little rattles, wrist rattles & feet rattles. She loves them all. Once I find my cord for my camera I will be able to upload pictures. I do not know where the cord is currently. I hope all of you had a wonderful Easter this year. Thank you for your continued support of our family. It means so very much to us. Gas is killing us (like it is every one else) we have to drive an hour to go to any of Cami's appointments. An hour there and an hour back and her Houston appointment is a 9 hour round trip. Gas is killing us... I try to make her appointments all on the same day as often as I can so that it will save on gas, but that is not always possible. I pray that gas prices go down at least a dollar a gallon soon. Camryn got approved for medicaid now- so that is helping tremendously. The only problem is that medicaid won't pay for some of her medical supplies. They want her to use certain supplies, but she has a reaction to 2 of them so we have to use 2 other different supplies that do not cause a reaction. The Doctor has contacted medicaid and advised them that Cami has to have these certain supplies due to a reaction to the others, but so far they haven't authorized them. One box of cloth w/ silver in it to help keep her neck dry cost $328.00 for a month's supply. They want us to use nystatin powder, but the powder causes a horrible rash on her skin so we cannot use it. The other thing that they don't want to pay for is just a plastic tubing that goes on her oxygen machine. That piece is just about $10.00 and we can use it for a while- so that one isn't one that we really worry about- the cloth is the killer. Anyway, thank you all for your support- we appreciate it very much. Thank you for all of your prayers for our sweet baby girl as well. Will update again when I can. Will try to find the usb cord for my camera so that I can upload pictures as well.

Sweet Cami Updates

2011-04-22T15:24:00.001-07:00

Sorry I haven't updated in a while, I know many of you were concerned and I apologize. Camryn was in the hospital for 5 days when we took her back after she was out. After that 5 days we came home and she has been doing wonderful ever since. Unfortunately Cami has a weak immune system and therefore she will come down with something easily. Her Doctors say that over time her immunities will build and she will get sick easy forever (thankfully) Since she has spent about 90% of her lifetime in the hospital she has been in a "sterile" environment and once she came home she wasn't in that environment any longer. When I took her to the Pedi 3 days after coming home, she got sick that day and it was awful. Anyway, that is the past now.... Camryn is growing wonderfully and continues to amaze us daily. We have 3 nurses that come to the house different days & hours to help care for her. It takes 2 people to do her trach care and to bathe her (due to the trach & her fighting you) She has to be suctioned often to clear the mucus out of her trach. She is on the pulse ox machine all the time to monitor her oxygen level and her heart rate. It has to be on her feet in different areas and has to be moved every 12 hours so that the sensor will not burn her skin. The only good place to put it on her, is her feet. We have tried to her hands and toes, but they didn't work out very well. We have to carry 3 machines with us every where we go, so going anywhere is a lot of fun *lol* We have to have her pulse ox machine to monitor her oxygen & heart rate. We have to take her suction machine to suction her trach so that she can breathe easily. We have to take her feeding bag, machine, lines & formula to feed her with her g-tube. We also have to carry oxygen with us every where. I have one oxygen machine in the van that stays there all the time and 2 in her room in the house. Her Pedi is ordering me a portable oxygen machine that will be easier to get around. Cami really loves being at home. She has so many toys and tons of attention from Momma, Daddy, her big brother Cody, 3 nurses and other family members. She loves to play with her hands and feet and will smile very big when her big brother shakes a rattle for her. She can roll on her side by herself and has turned from her back to her belly one time so far. She does not like being on her tummy at all. When she has physical therapy we have to put her on her tummy for a while to try and help her neck muscles become stronger. She gets herself very worked up and sets her pulse ox machine off because her heart rate jumps really high. Her eye sight is very good in one eye, but the other is not very good yet. We put an eye patch on her good eye for 2 hours a day to try and help her strengthen her other eye. I don't know how well it is working but we hope eventually that she will regain sight in her other eye. Her hearing is great though! She loves to listen to music and loves to grab her toys, hands, feet & the mobile in her crib. When she is in her bouncer and laying on one of the little jungle gym things that are on the floor with toys hanging above, she will grab the toys and smile. She makes my heart melt daily :O) Sorry to be rambling, but trying to get so much in one post. Cody is still jealous of her sister and I guess that will continue for a while. He doesn't care about anyone else playing with Sissy, but he doesn't like his Momma playing with Sissy. He is okay for sharing for a couple of minutes, but any more than that and he is trying to push me away from her or, if I am holding her he will try to get in my lap to be in between us. We are working on it but I think it will just take time. I try to explain to him that Sissy needs Mommy's attention and that she is sick bur he is too young to understand. He will be 2 years old on June 26th. Time seems to be flying with my little man *sigh* He hurt himself really bad last night. He was opening the back door and calling our dog J.J. in like he always does, however usually J.J. doesn't come unless I call him. So, I was putting laundry in the washer and Cody was calling J.J. in, well for the first time every J.J. came in with Cody calling him and I wasn't holding the door with Cody. Cody can only hold the door open a tiny bit with her little arm and J.J. is a big dog- so, J.J. came in and it knocked the door out of Cody's hand and Cody fell onto the steps and then off the steps to the ground. It happened in a split second, I couldn't get to him fast enough (even though I was just about 3 feet away) So, he has scratches all over his little face and neck from falling into a bush. He had dirt in his mouth and he has a small cut on his eye lid. I cleaned him up and Cami's nurse was there and she helped me and said that she thought he was okay, but of course she wasn't a Doctor. So, we went to sleep and then this morning he woke up with his eye swollen shut and black & blue. So, I took him to the Doctor and they looked him over and checked for fractures, knots, bumps, etc. Thankfully he didn't have any. Then they put dye in his eye and used a black light to see if he had a scratch or puncture in his eye and he did not (Thank God) So, my little man looks like he has been in an accident. However, he is acting like nothing is wrong at all. Got up this morning and said "hi Pigs" to his guinea pigs, went to Cami's room and said "hi Sissy" then started calling J.J. in the house (I had already put him out) So, he is still his happy little self. Camryn got approved for medicaid (finally) however, medicaid doesn't pay for a lot of her trach care supplies. She has this white cloth that has silver in it that has to go between her skin and her trach ties to keep her little neck dry. Well, medicaid will not cover it. It is like $300 something a box and a box only lasts about a month. She has to have it because the nystatin powder causes a rash reaction. Unfortunately it cost about $85.00 to fill my van up and we go through a tank and a quarter every week taking Cami back and forth to the Doctor and therapy and stuff. (occupational therapy starts coming to the house next week) So, I am going through about $115.00- $135.00 a week in fuel. I hope gas prices start to go down soon because it is killing us. I am so broke that my step dad had to pay the co-pay for Cody's Doctor appt today. I hope you enjoy the pictures- they were taken today. I will try to update again soon. We have to pay a couple hundred dollars to get our internet back on. So, once we have the money we will turn it back on and I can update daily and post a lot of pictures. I know that there was an auction to benefit Cami, so we should get the money soon and that will definitely help our little family. I hope there is enough to get the internet turned on. However, the most important is to get Cami's medical supplies stocked up. Thank you all for your continued support of our family. I can't tell you how much it means to all of us.

Love you all,

Christy, Kevin, Cody & Cami

Short Post

2011-04-04T15:18:00.000-07:00

Sorry I haven't updated in so long. I spent quite a few days with Cami at the hospital getting ready to take her home. We left to go home with her this past Tuesday evening. Every thing was going great and we were all so happy to be a family again. Well, I took her to her Pediatrician on Friday because that was a condition of them letting her out- she had to see her pedi by the end of the week. So, Friday I took her in and she was all smiles and doing wonderful. She received her overdue vaccines and about 30 minutes after we left all heck broke loose. She started running a fever, coughing non stop, had a ton of mucus building up. It was awful. I gave her Tylenol and that helped with her fever, but little else. Saturday night I took her to the ER, because she had labored breathing and it was terrifying. As soon as I walked into the ER, the nurse at the desk called to the back and told them to come and get Cami immediately- (they didn't even have her name at this point) Then, they gave her an antibiotic that she had an allergic reaction to- her entire was a deep purplish/ red color. They gave her benadryl to help with that. Anyway, she was hospitalized again. She has been at the hospital since Saturday night and continues to be there. They believe that she has got a virus and then getting vaccinated on top of it was too much for her little body to take. So, we are back in the hospital unfortunately. I have to run. I will try to post more later today or tomorrow.
Please continue to keep Camryn in your prayers.

Love to you all- Kevin, Christy, Cody & Cami

Sorry So Long Without A Post

2011-03-22T19:22:00.000-07:00

Cami is doing okay. We still hope to bring her home at the end of the month. We have an all day training on Thursday for trach cpr and more equipment training. it is going to be hard for sure. Cami is great though and I am happy about that. Cody has a double ear infection and allergies and a virus, so I am getting no sleep lately since he is up all hours of the night. His Pedi put him on amoxicillian and my Dr put me on it as well since I am getting the same thing. I just hope that Cami doesn't get it. I wear a mask when I am around her and the nurses think that is safe- I am not sure about that. This weekend Kevin and I have to take turns and do a 24 hour shift taking care of Camryn by ourself. Without any nurses help at all. It is going to be hard to say the least but I hope we can do it. If we fail, we can't take her home until we pass it. Anyway, I want to thank all of you for your continued support for our family. You have really saved us in so many ways. I worry about her ongoing medical bills though. I worry about them all the time. I am so very happy that people are doing auctions to help us with the ongoing medical expenses. Thank you all for your continued support. You are truly a blessing to us. I hope you enjoy the pictures that were taken in the last few days.

To Clarify

2011-03-17T07:00:00.000-07:00

No one has accused us of not being real. It was just brought up to me that a lot of the mom's really didn't know if they should continue trusting every story. Honestly, no you should not trust every story. Some people are out there to scam you. Is it sick? Yes, it is. However, it is done. If the person cannot produce many pictures of their child- they most likely are not telling the truth. Anyone, (especially with a sick child) will take tons of photo's because you never know what may happen. I have over 2,000 pictures of Cami and about as many (if not more) of Cody. I have had losses in the past. I KNOW that every day is not a guarantee. If a child is hospitalized, you will definitely see hospital equipment in at least some of the pictures. If all of their pictures are shown in the same outfit- another red flag.

So, definitely do not fall into a trap knowingly. However, don't exclude yourself either. Before you send money be SURE that the story is true.

Are We Real???

2011-03-16T12:38:00.000-07:00

Unfortunately there was someone who *allegedly* used sickness & death of a baby to gain sympathy, friendship and maybe financial gain. So, now the people who were taken in by this person are asking about all the rest of us who have legitimate problems. Are we for "real"?? Well, anyone who really needs to know if we are for "real" can call the RMH in Austin 512-472-9844. Our names are Kevin & Christy Faglie- we are currently in Rm 26. Unfortunately, we have been here since shortly after Cami's birth and got a "leave" of a few weeks and have been back since 12/6/10 except for a 1 week leave. I would not ever make up a child's health issue and even in my wildest dreams could not have made up half the stuff that has happened to my poor daughter since her birth almost 7 months ago. If you are my facebook friend, you can find my family and contact them as well. Any of them. I would hate to think that you would think of us as "liars", but I understand since you trusted someone else who turned out to be.

Enough of that. Cami is doing great today, we had a "care conference" with 2 of her Doctors, 2 of her nurses and 2 social workers on a plan to get Cami home. We are aiming to have her home by the end of the month. We have trach cpr and more equipment training next Thursday (not tomorrow) then we have to care for her by ourselves for 24 hours each and pass that before she can go home. So, keep us in your thoughts & prayers.

Pictures From Today

2011-03-15T23:29:00.000-07:00

Cody was in the middle of saying "Hi Sissy" He sounds so cute when he says it.

He is so gentle with his Sissy

Have I mentioned how much I love this kid???

My Beautiful Baby Girl. Half of my reason for living. The other half pictured above :)

Unfortunately, Cody and Cami have never had a lot of time together. So, as they both age it is important to me that they be "close" I want Cody to love his little sister through thick and thin. I want her to adore her older brother as well. It is hard to see one child have to work so hard for everything, but I know that she is mine for a reason and I will do what I have to do to care for her. Today after surgery, she slept a long time. My mom came and got Cody this afternoon because I have a Dentist appointment in the morning. I am blessed beyond words that my mom and step dad have been able to care for Cody as much as they have. He is enjoying the visit with his cousin, as my mom and step dad have his cousin there as well. Thank you all for your continued support and prayers. When I feel like giving up, I think about everyone who has been keeping us afloat with prayers and finances for so long now. I wish that I could visit with each and every one of you. Maybe one day I will. We are hoping to have Cami home by the end of the month. I will go into specifics in another post. We have paid for our part of all of her equipment. ($2068.00) Our monthly out of pocket cost will be anywhere from $384.00 - $567.00. They are not sure of the specifics quite yet because the number depends greatly on just how much special formula she is taking in and how much oxygen, etc she goes through. They say we should know the "average" by the time she is home about 3 months. I am hoping that SSI comes through for us soon, because I do not see how in the heck we are going to pay all of this out of pocket. Camryn was born with 3 birth defects, premature (born at 31 wks), now has a trach and a gtube and requires oxygen a lot of the time. So, I believe she should qualify with all of the above. Anyway, it is almost 2am and I am exhausted- so I hope you all enjoy the pictures.

Back At RMH

2011-03-14T16:18:00.000-07:00

Well, we checked back in at the Ronald McDonald House today. We got the room that we stayed in when Sissy was born and in the NICU. I much prefer this room to our last room. So, change is a good thing. Sissy is doing great- she is set to go to surgery in the morning. I was told to be there at 7am, but they still do not know what time her surgery time is as of yet. They are going to stretch her windpipe, look on the inside of her tummy with a camera and remove her broviac (sp?) tube that was surgically placed in her chest a few surgeries ago. I have paid for all of her equipment now (Thanks to all of you) and now just have to worry about her month to month costs. I took her g-tube care, cleaning and everything else course today. It is pretty straight forward- so no worries there. Here are pictures from the last few days. I hope you enjoy. Will write again later- have to get Cody fed and go and visit Cami again.

Camryn's Auction

2011-03-12T19:10:00.000-08:00

Please be sure to visit Cami's auction page at http://www.facebook.com/pages/Offical-CAMI-PAGE/158650890856920

All proceeds are going to help with Cami's ongoing medical bills. Feel free to post the link on your own blog page or facebook account. We truly appreciate it.

With any luck Cami may be out of the hospital by the end of the month!! If we can get all of her supplies and training finished she will be home where she belongs!!!

Keep my sweet girl in your prayers- prayers are what is keeping us going.

Camryn's Auction & Surgery

2011-03-12T15:34:00.000-08:00

Camryn's auction is now live. All the proceeds go towards Cami's medical expenses. Please visit the auction and bid. Items are still being accepted to auction as well. The link is http://www.facebook.com/#!/pages/Offical-CAMI-PAGE/158650890856920Camryn is going back into surgery next Tuesday. The surgery is to enlarge her windpipe opening. She has had 2 of these surgeries already. This will be #3. The hope is that eventually we will be able to remove the trach and Cami will be able to breathe without the trach. I meet with the g-tube training lady on Monday so that I can learn how to feed her using the g-tube. I have already learned how to clean the area , but now have to learn everything else. Once we are done with all of the training for everything we hope to be able to bring her home. We have to learn trach care (which has to be done 2 times a day) trach changing (has to be done 1 time a week) g-tube care (daily), trach cpr and the what to do if??? There is a ton of stuff that we have to learn. We are both done with "trach care" training. We are still learning trach change. We are done with g-tube cleaning, but still have to learn everything else about it. Kevin has changed her trach 3 times and I have changed it 2 times. It takes 2-3 people to do trach care and trach change. You cannot do it on your own. (especially with Sissy, she is a strong little girl) We are supposed to learn trach cpr this coming week, that is a 2-3 course process. They want to be sure that we know what we are doing and I appreciate it very much. Our monthly cost for all of her supplies is around $300.00. That is if the insurance will cover her formula. If they will not (we do not know yet) it will go up quite a bit more. We are hoping that wic will cover it because she did qualify for wic. Her insurance is paying several thousand dollars a month for the equipment, nursing care, oxygen, etc. So, $300.00 is not bad- it is much preferable to thousands of dollars (we could not afford that at all) I met with the home health company yesterday and we went over our preferences for her care. I get a nurse 12 hours a day- I can choose night or day or a combo of both for example 5pm-5am. That way I have "day" help and "night" help. I told them that at this point I am not sure when I will need them so we will play it by ear. I learned about all of her equipment that we will have to take home with us as well and I admit it was a bit over whelming. I am not sure what our part of the equipment rental will be a month. At this point we desperately need her to be on SSI so that it will help cover our monthly expenses for her equipment and supplies. We desperately want her home, but I am getting a little nervous because of all the care that she requires. Most of our house has wood flooring, but the bedrooms have carpet. The Doctor said that it is preferable not to have carpet because carpet can hold a lot of dust, hair, etc even with daily vaccuuming. So, we are working on trying to get wood flooring in Cami's room. Laminate wood flooring is not that expensive and Kevin can put it in. Lumber liquidators has the cheapest at .79 cents a foot. It isn't as nice as the rest of the house, but it will work and be better for Cami. I am using my niece's computer and cannot upload pictures because I do not have my usb cord. Her computer isn't one that you can just put your memory card in. So, I will see if the Ronald Mcdonald house will allow me to use their internet for a bit and I can upload more pictures. Cami is smiling a lot more these days- she is just too cute for words. I love her so much and I am so happy to be her mom. I feel blessed daily that God gave her to me and not anyone else. I am thankful to all of you who have gathered around us and prayed for her. Please share her auction link with anyone you know. I would appreciate it very much. With the recent gas price increase- it is killing us to drive back and forth every day to see Sissy. I am hoping that we can stay at the RMH again starting Monday if they have an available room. That way it will not cost us $50 a day to go see her. Well, will go for now

Hello All

2011-03-09T14:24:00.000-08:00

Hello, it has been a couple of days since I Have been online. I want to say "Thank You" to all of you for your prayers and the donations!!! I have paid one medical supply company $736.00 and they delivered 6 boxes so far. I have to pay another what I owe them and they will send more supplies. I want to thank all of you for all that you have done for our family. We would not be able to do it without you all.

There is an auction that is going on to benefit Cami. The link is http://www.facebook.com/#!/pages/Offical-CAMI-PAGE/158650890856920

Please help support Camryn by donating to the auction or bidding in it- Thank you!!!

I have received numerous emails about Medicaid & SSI for my daughter. Before Camryn left the NICU, the hospital applied for SSI benefits for Cami due to her special needs. We had one interview in November and have not heard from them since. When I did contact them, I was told that they are still in the middle of the process. So, it is not an overnight thing. Regarding Medicaid- even when your child has special needs- they take your income into consideration- therefore- Cami is not eligible. So, though I know you are trying to be helpful by bringing up SSI & Medicaid- believe me, we have tried that avenue.

Camryn's Doctors believe that she should have certain equipment that the insurance does not think is a "necessity". Therefore, we are in the process of trying to get her insurance to cover more, but in the meantime, we are responsible and do not want to let Cami continue to sit in the hospital any longer than she has to. Sorry to cut this short, but it is my "class" time again with Cami so I have to go. My camera is still packed, so no new pictures yet, but will try to get that unpacked tonight. I paid the deposit on our home phone- so I am hoping that it will be on shortly. They have to put in some new lines where they were cut before, so I don't know how long it will be.

Thank you all so much for everything. We love all of you

Christy, Kevin, Cody & Camryn

Heading Out

2011-03-06T13:22:00.000-08:00

We are packed and heading out. Both of our vehicles are stuffed to the gills with all of our stuff, but we are making it. I am going to use donated money to get our home phone turned back on. I will call them tomorrow and see when they can have it on for us. I will try to get Internet back as well. My main focus though is on the phone because the hospital can not contact us on our cell phones because we do not get a signal at home. Also, once Cami does come home that is our lifeline for her. We are still learning trach cleaning & changing and now g-tube cleaning and care as well. Once all the training is done with we should be able to take Cami home. We are going home today to start cleaning and dusting the house as it has sat empty since December 6th when Cami went into the hospital. So, though no one has been home to "dirty" it, it needs to be aired and freshened up. Also, we now have mice in our house. Kevin put out poison the other day, so I am hoping that they are no longer there. We will be bleaching the house down to clean up after them and running all the dishes through the dishwasher to be sure that everything is clean. We live in the country and unfortunately mice do come in your house if you do not have a cat and we no longer have a cat. (he passed away a while back) I will miss chatting with all of you, but as soon as I can I will have home phone service again and hoping to get internet again as well. Cami is doing great and I hope to upload pictures tonight from today (if I am able to use my mom's internet) It is going to cost us a pretty penny to go to see Cami every day, but we have to do it. I can not let her be neglected as she is when I am not there to advocate for her. So, once our classes/training for her trach & g-tube are done and we are able to pay for her equipment- we will be able to take her home. Yes, I said it.....*HOME* She will have nursing 12 hours a day, plus therapists coming to the house daily to work with her. So, my life will be pretty crazy for a while but in all honesty- it will be a "good" crazy and not a hospital crazy. I am told that I can choose a day nurse or a night nurse for the 12 hours. I guess I will have to wait and see what feels good when the time comes. My son will be happy to be home though! He will be happy to see the dogs and play in our house & yard. My heart is torn in two- as it usually is. Us going home is good for Cody but not for Cami. Us staying at the RMH is good for Cami but bad for Cody. So, it is a tight rope that I walk. If I get excited to go home- I feel ashamed of myself because Cami won't be with us. If I want to stay at the RMH, I feel ashamed because I know it isn't the best place for my son. So, I am just confused by it all. We should be done with all of our *care* classes with Cami in the next couple of weeks, but then it will be time to take her back into surgery to stretch her wind pipe again. So, if all goes okay we may have our baby girl home by April 1st. (if classes are done, CPR training is completed and we pass and we of course pay our portion of the equipment) So, please keep us in your prayers and thank you all for prayers and donations.

Love,
Kevin, Christy, Cody & Camryn

Packing & Heading Home

2011-03-06T07:17:00.000-08:00

I spoke with Kevin about staying in a motel/hotel around here versus going home if someone could help pay for it. He would rather we go home and try to get the house ready for Cami to come home. It has pretty much been abandoned since 12/6/10. I read the comment about people willing to help with a hotel stay. If you could instead put it in the chip in on my blog or mail it to me that would help. I coud use some of the money to get our home phone turned on and other to visit Cami daily and the medical expenses to bring her home. If mailing, you will have to mail to our po box because we are leaving the RMH today.

My address is
Christy Faglie
PO Box 212
Dale, Tx 78616

My cell number is 512-216-0752

I have to go now. We have to pack. I will check internet again before we leave here.

Pictures & Goodbye

2011-03-05T22:55:00.000-08:00

Kevin and I spent quite a few hours with our sweet girl today. We did her trach care and with tears rolling down our faces told her that we may not be able to come and see her every day for a while. We explained that gas is $3.40 a gallon and that with a 100 plus mile round trip, that it would be very expensive to come and see her every day. I told her that I would be sure that I at least come every other day for sure. I told her that she will always be on Mommy's mind. She just looked at me and gave me a crooked little grin. She melts my heart. I called around today and found a cheap motel for $49.99 a night plus taxes. However, it looks like it charges by the hour if you know what I mean. That is the least expensive one that I found. There are weekly rentals as well and they are nicer and are about $250.00 a week. I guess we are just going to go home and try to come see her daily or as often as we can. It is going to kill me to be away from her. There just isn't anywhere that I can stay with my husband and Cody that is really close to the hospital. A friend from high school offered to let me & Cody stay with her for a few days, but Kevin doesn't like that idea- he wants all of us together. Kellie (my friend) doesn't live very far from the hospital. Kevin is stressed out and is taking it out on me. He acts like us having to leave is my fault or something. I can't stay at my dad's because he and my sister and brother in law all live in my dad's house and they all chain smoke. I cannot stand the smell of smoke and will not allow Cody around it. My brother and sister in law have a very large 2 story home, but they think that Cody is too spoiled and I am not going to let anyone yell at my child for being a child. My mom & step dad live out near where I live so that does not help either. So, I guess we are moving back home tomorrow and will try to come and see Cami every chance I can afford the gas. We also do not have internet access at home right now and will not until we pay our balance in full. The crappy thing about that in August when I had Camryn and she was in the nicu I called the internet provider and told them to turn the internet off because we would not be living there again until our daughter went home. Well, they never turned it off until I accidently hit "internet explorer" on the screen when looking for the time and it came up. So, I called them and they told me that I never called and still owed them $680.00 They did at that time turn it off, but will not credit the unused 4 months. Anyway, the good thing about going home is that I am at home! I can visit my pets, which is a definite plus!
So, here is a list of good vs bad

*Going Home*
*Positive*
1. Sleep in our own bed
2. Cody will have both his room which is full of toys and the playroom we well.
3. Cody will be able to play outside (yard is fenced & I have dogs- won't have to worry about him being kidnapped.
4. I won't have to bleach Cody's tub everyday like I do here:) At RMH, I have to bleach it top to bottom when we first move in, but still have to bleach the tub at rmh daily because Kevin and I shower there as well and don't want him to have funky adult germs.
5. Last but most certainly not the least..... I get to spend time with my dogs!!
*Negative*
1. Will miss Camryn terribly
2. Gas will kill us financially
3. Will add so many miles to my car that Something is bound to go wrong.
4. Will have to go grocery shopping and since I am broke I am not quite sure how tht will
4. No land line, so in an emergency I am in trouble
5.

*RON**ald McDon**d House*
*Positive*
1. I can visit Cami often
2. I can take Cody to the park right down the road and he likes to visit some of the displays at the hospital. They truly amaze him.
3. All the stores are so close to us here. I can walk to so many diffent store chains like Toys R Us, Old Navy, Target and lots of other stores.
4. Cody loves the elevator and get the biggest thrill riding in one.
5. Our electric bill is lower than ever now, lol.
6. We get lunch and dinner at the RMH every day of the week (it is included in $10 a day that a family is charged to stay here. (unless you have medicaid then medicaid pays for the family to stay at RMH

*Negative*
1. Cannot have food or drinks in the rooms (kids can have juice or milk in their bottle or sippy cups that don't leak
2. Have to do down to the first floor to refill Cody's cup
3. Have to keep refrigerated items in the fridge. You are supposed to write your name and room number on everything that you bought & brought with you. Well, I have spent a total of about 5 months here at the RMH and I have had MANY things taken. Example- brand new box of lucky charms, 1 pound of brisket from a bbq joint in Lockhart ( Lockhart has fantastic bbq) soda, beanie weanie cans, toaster strudels, vienna sausges and now for the absolute worst... Cody's Juice. Cody is only allowed soy milk, juice & unsweetened tea (or very lightly sweetened) So, since I go with the "no added sugar" in the juice- that makes it more expensive. The soy milk is like $2.60 for a half gallon. One day all of his juice was gone and most of his soy milk. (yes it did all have our name on it)
4. People will fill up all the washers and/or dryers full of their stuff for hours at a time. What does this mean for me? I have to keep going back every hour to check all of the washers/dryers (whichever I need) and sometimes the same clothes will literally be in there all.day.long.

Sorry so long. Just needed to blow off some steam at this point. I do not want to leave my baby girl, but I have to because I don't have $300 something to stay in a motel for a week. I don't have the $2k to pay our portion of the medical supplies and I definitely do not have the money to go grocery shopping to stock up on supplies. I have some meat in my deep freeze that should still be good but we need canned goods, fruits, vegetables, basically different food items needed to make it. Canned goods are not that expensive, so I should be able to wing that for now. But, when Sissy comes home I have to buy more formula which is going to kill us again. It is crazy that it took us 7 years to have Cody and then got pregnant with Cami less than a year later. I am so very blessed by my children, friends & family. Sorry for running at the mouth, I am just tired & frustrated.

I just noticed my donations on my blog!! THANK YOU TO THOSE WHO DONATED TO MY NEW CHIP IN!!! It is going to be used to purchase her medical supplies and if any is left over I am going to try and get my land line put back in.

My day just brightened. THANK YOU SO MUCH FRIENDS!!

Moving.....

2011-03-05T10:12:00.000-08:00

Cody loves to wash his hands.

Close up of Cami with her NG tube in

Kevin, Me & Our Sweet Little Girl

left Tara, right Jax

Closest to camera is Ace, then Jax then Tara

We have been at the Ronald McDonald House since 12/7/10. When you stay at a RMH, you get to stay for 60 days, then you have to check out for at least a week and then if your child is still in the hospital you can come back with a hospital referral. Well, we have been lucky because since there were always rooms available, they let us stay past our 60 days. Well, now they are fully booked and have people on a waiting list. Where does that leave us? Well, we have to go home and then try to come back in a week. The problem with this? Well there are a few.
#1- Gas is at an all time high. I drive an suv and we live over an hour from the hospital. So, I can't afford to drive back and forth every day.
#2- Phone issues. Our cell phones do not work at home. So, if there is an emergency- the hospital cannot get in contact with us. I have to pay the phone company $118.00 (that is a deposit, I paid the amount that we owed them a long time ago) to get our home phone turned back on.
#3- Cody. Cody will have to ride back and forth with me every time I go to see his sister and that is a lot of time being strapped in a car seat. He doesn't watch tv- so putting a movie on will nothing for him.

I am in tears with frustration. The least expensive place to stay in Austin is about $50 a night and that is for a dump. So, we are stuck between a rock and a hard place with no where to go. It will cost about $45 a day in gas plus the approx 3 hours that it takes to make the round trip. That is hard on Cody. He is 20 months old- just a little big boy who likes to move around. It is going to be a complete nightmare to drive back and forth with him. I am darned if I do and darned if I don't. I feel like I am hanging on the side of a cliff and one by one my fingers are losing grip. I don't know what to do. I have to see Cami every day because we do trach care 2 times a day and a complete change 2-3 times a week while in training. (once she comes home trach change will only be 1 time a week but trach care will still be 2 times a day) So, now I have to come up with almost $2k to get all of her equipment. Plus $40 plus a day to go back and forth to see her. That is unless we stay in a hotel, but that is entirely too expensive. *sigh* Sometimes I just feel like giving up.

Regarding the comments about putting Camryn on SSI. The hospital applied for SSI back in November for her. We still do not have a decision yet. Apparently, it can take up to a year or longer to get a child on SSI. The hospital she was born in is the one who applied for it- I didn't even know that they did until we were checking her out of the NICU and learned at that point. We had an appointment in November but I haven't heard from them. When I called them on Thursday I was told that it is still in the "review" process.

Regarding "state" insurance. The hospital Cami was born in applied for that for her. We were turned down due to Kevin's income.

The good news in all of this is that we have a $5k a year max out of pocket. So, even though insurance has paid over a million dollars for my sweet little froggy girl, we are only responsible for $5k in 2010 and $5k in 2011. Except of course we still have to come up with around $2k for the equipment to bring Sissy home.

A while back I got the kids 3 guinea pigs. Cody is so cute. As soon as he wakes up he runs to the Guinea Pig cage and excitedly waves at them saying "hi, picks, hi picks" (he is saying hi PIGS) It is entirely to cute, he makes my heart happy. We watch a show called "S*ons of An*archy" which Kevin loves. So, we named the Guinea Pigs "Jax" (male) "Tara" (female) from that show and then the other is named "Ace" (male) I am getting my males neutered so that I don't have a guinea pig farm though. I had guinea pigs when I was growing up, I also had pet rats. I was thinking about getting the kids a couple of pet rats, but I was scared that the kids would pull his/her tail. I have taught Cody to be gentle to his "picks" He very lightly, using 2 fingers pets them and says "entle momma, entle" (he means "gentle momma, gentle" because that is what I tell him. He is such a loving compassionate little man. I feel so blessed to have him and Cami in my world. I didn't set out to get the guinea pigs when I did- I eventually wanted a couple when the kids were older, but when I went to the store one day there was a lady in front of the store giving them away because her son left for college and left his gp's with her and the female had 2 babies. She just had Tara left and the people walking in the store behind me had about 8 kids and they were trying to get Tara- so I grabbed her up so that she didn't end up hurt/dead at the hands of 8 kids. Well gp's are social creatures and so I had to get Tara a friend. The person I got Jax from told me he was a female- imagine my surprise when I found out that he was a male. (when I actually looked) So, I was happy with Tara and Jax, but then I was going into Pet*co to get gp food, chews and hay and there was a lady outside giving away Ace. Said her son was allergic to him. So, that is how I came to be the mom of 3 gp's. Tara & Ace look a lot alike except that Tara has wavy hair where as Ace has straight hair.

Please keep us in your prayers. I truly need them now.

Thanks & Much Love

Pictures from Tonight

2011-03-04T18:20:00.000-08:00

Here are some pictures from tonight. Cody loves corn on the cob and made a grand adventure out of it. My niece looks so much like I did as a child. She is 5 now. Time flies.... I hope you enjoy the pictures.

Money, Money

2011-03-03T08:49:00.000-08:00

Spoke with the medical supply company this morning about getting all of Camryn's supplies ordered so that once we are done with all of our training with the g-tube and trach we can take her home. So, they are running through 20 million things on their list and I am just sitting there saying (uh huh, yes, okay) Then at the end of the call the girl wants to know how I am going to be paying for all of that today. Excuse me? She then tells me that AFTER the insurance pays that we still have to pay $1928.64 out of pocket. I just start laughing because well people- we don't have $1928.64. So, my life keeps on trucking.

Just Going To Stand There.....

2011-03-02T08:58:00.000-08:00

Daddy, Mommy & Cami

Baby Cami (notice no ng tube in her nose anymore due to g-tube)

Mommy & Cami

Daddy & Cami (right before her trach change)

My handsome little man. He is such a mess

Since Cami has had her trach- you cannot hear her when she cries or when she makes any noise at all. I hate it because she cannot express herself. It makes me crazy- it puts me on the attack for my daughter. I am an easy going person.... Well, not really I USED to be an easygoing person. Now I am a nightmare in the form of a mom. I feel the anxiety on the floor go up when I get there. Every nurse there wants to be distanced from me. I am sure that "Camryn's mom" gets brought up a lot in their meetings and shift huddles. I am sure that I am called some pretty nasty things behind my back as well. You know what? I don't care either. People should do their job and I wouldn't have to be crazy. The other day I walked in behind another family (you have go dial in at the door to the unit and give a password to be admitted into the icu/imc wherever your child is) So, needless to say they didn't know I was there. I was able to walk down the hall and into Cami's room without being noticed in the least. I left her room door open the way it was and I sat in the recliner beside her crib (you can't see the person sitting there from the hall) What was I doing? I was testing them. Guess what? They FAILED horribly. I was in that room for over an hour and during that time Cami was crying most of it- her heart rate sped up and guess what? The nurse muted it from the hallway. She didn't even come into the room to see what was wrong. Mind you, Cami cannot make noise- so she sat there in silence. Mommy was there and of course I calmed her down- but no one came into her room. So, once I was able to calm her completely and change her SOAKED diaper and put on her diaper cream (because she has a rash... I wonder why?) I walked into the hallway and waited to be noticed- it didn't take long. I am a nightmare in mom's clothing. I tore that nurse apart, then the charge nurse and then the rounding Doctor. How DARE they ignore my baby girl when she is in distress? So, I have filed a formal complaint. I also told them that I never want that nurse with Camryn again. The charge and Rounding Doctor agreed with me that it was wrong and blah, blah, blah. You know, I.am.so.damn.tired. I don't understand why they find it so hard to give Camryn ANY ATTENTION AT ALL if I am not there to be sure of it. Don't get me wrong- she has good nurses too. It is just that the bad over shadow the good. Last night Kevin and I did a complete trach change and care together without anyone helping us. You know what??? This is the first trach change or trach care that Cami did not cry. I am not lying. As God is my witness, Kevin and I worked along side each other and she never cried. Even the 2 nurses watching us were amazed and said the same thing- that they have never known Cami not to cry and get herself worked up during anything to do with her trach. It was because we were GENTLE, TALKED to her and TOOK OUR TIME. It really isn't hard to take a few minutes is it??? Well enjoy the pictures- will do another post later- I have a meeting with the hospital about my "concerns" that I have to get to.

Cody & Cami at 6 Months

2011-02-26T15:54:00.001-08:00

Cami 6 Months

Cody 6 Months

They resemble a bit. Not a lot, but some. I sure do love my little ones :O) (BTW Cami's 2 bottom teeth have broken through) They do have the same nose, coloring and same shaped ears. (nose is my side of the family the *shape* of the ears are mine, but the way Cody's stick out is courtesy of his daddy)

What I Was Going To Say....

2011-02-25T18:21:00.000-08:00

Sissy Right Before Surgery

Before They Took Off Her Clothes

My Gorgeous Son Cody

This post was going to be titled "Tired" because that is what I am folks... Tired. Mentally, Physically, Emotionally... just plain darn tired. Then I read a post about ANOTHER baby dying this week. WTH????? Yes, I am up to 4 DECEASED babies this week. Not only that, but it would be horribly unfair to my fellow infertile friends who would eat a shoe to have a child and be "tired" like me. For those who do not know, let me take you back. (Mom- don't read any further because you don't like to talk about it) I was a "fertile" once upon a time. Yep, me... I could get pregnant w/o science. Can you believe it? When I was 19 I got pregnant by my then boyfriend. I got prenatal care- I told all of my family (he didn't) I wore clothes to "hide" my belly because he was scared that his parents would kick him out and we didn't have a home at that time. Anyway, I had a little girl- a little early and she was stillborn. Yep, you read it right... she was dead on arrival. No reason- just "it happens sometimes, just like with SIDS" So, naive Christy gets pregnant again- has a miscarriage and again and has a son at 21 weeks. He is also born dead. Doctor- still gives me no reason.... I find a new OB who sends me to a specialist (I still see the new ob and the specialist office) who determined that I had a blood clotting disorder that was killing my children. So, once I was pregnant again I would have to give myself blood thinner injections and take a baby aspirin and all should be fine. Well, then I couldn't get pregnant again. Then the fertility treatments started and went on and on and on. Then we decided on adoption- got home study completed all was done and then we switched to international because of a horrible experience with a birth mom. Got approved for international. Then gave it one last shot... I got Cody out of the deal. I am LUCKY to have my children. They are EVERYTHING to me. So, if I ever say anything to hurt you, I apologize. I do not mean to. I am just stressed. I am very, very lucky to have my babies to hold.

I try to "block" Charity & Gage from my mind a lot of the time. It hurts to think of them. However, this week it has been hard with all of the losses coming my way. I have to admit I am getting depressed. There are 2 songs that remind me of my kids- The Dance by Garth Brooks and Who You'd Be Today by Kenny Chesney. I love both- but both hurt. I had both of their names and Dob's tattooed on my ankles. That way they are ALWAYS with me. I was young and I had to "know" that they existed in this world. I Love You Charity, I Love You Gage. I will see you again someday. **forgive my hair legs, I do not have time to shave these days** Also, Cathy- if you are reading this- I am sorry that this had to be brought up but it did. You know he didn't tell you about Charity and you know about Gage. (I will also be getting Cody & Cami's names tatted as well, just not sure where yet)

Forgive Yesterday's Post

2011-02-24T11:55:00.000-08:00

My mom texted me this morning wanting to know if I was drunk when I wrote yesterday's post. Umm, no I don't drink. So, I went online to see what she was talking about. I started laughing, laughing pretty darn hard actually. I updated my blog from my phone and somehow mixed in text messages from a friend into my blog entry. I still do not know how that happened. However, it did. So, for those of you who are still shaking your heads about "contact sports" and whatever else was on there- it wasn't supposed to be there, lol. Camryn did very well during and after surgery though she was pretty sore and in a lot of pain afterwards. I would appreciate your prayers that she heal quickly and as painlessly as possible. Thank you all for your support. I am going to try to upload "before" surgery pictures now but computer is giving me a hard time- so it they may come later.

Camryn's Surgery

2011-02-23T13:11:00.000-08:00

Camryn had surgery at 11:00 am this morning to place a g-tube in so that she could eat and also wrap part of her stomach over her esophagus to help with her reflux issues, We are hoping that this corrects most of her feeding issues and her reflux issues as well. Dr Horwitz is her main surgeon and he believes that her surgery has come through quite well. She had to have some of her stomach "wrap" around her esophagus to prevent her reflux,so we are hoping that that is the end of that. Sissy was sure a trooper through it all as well. She is such a smart, intelligent little girl and I hope that all of these surgeries will not effect this. From what I hear Dr Horowitz is an excellent Physician and that makes me happy that my little one does have him as her surgeon. So, please keep your fingers crossed that things keep going in the right direction for her. God Bless and Amen

Pictures & Updates

2011-02-21T13:42:00.000-08:00

Mommy, Cody & Cami

Cami Chewing On Her Little Hand

Chewing On Her Little Hand Again (Big, Pretty Eyes)

Beautiful Baby Girl

Camryn's 2 bottom teeth are coming in slowly but surely. She has been chewing on her sweet little hands for quite a while. I put my (gloved) hands in her mouth and I could feel her teeth right below the surface- so they should come through any day now. She is still having surgery on Wednesday 2/23, but I still do not have a time yet. They always do this and I do not care for it at all. I wish they could give me a time and date at the same time. However, I guess I have to be glad to get what I do. I got a $100.00 donation towards Camryn's medical care this morning as well. (Melissa- I will be emailing you her address to send a bracelet) Cody is doing well and was able to see his sister yesterday- he acted like he didn't care on bit and just played with her toys and ignored her. He was pretty good at doing that at home as well,lol. He fell asleep on the couch in her room and I got a picture of him that I will post. I then fell asleep in the chair and woke up with my whole body killing me. Won't be doing that again. Cami still has a ton of secretions that she has to have suctioned many times a day and still gets breathing treatments every couple of hours. Will write more later, thank you all so much for everything.

Cami Is 6 Months Old Today

2011-02-18T11:50:00.000-08:00

Well, I finally have Internet again *yay* Cami is 6 months old today, but she is sick right now. She had a fever of 102.3 last night and they gave her tyl*enol and it went down to 98.1. Yesterday morning she vomited and was put on antibiotics in case she aspirated her vomit. I am learning how to take care of her trach and I do not like it one bit. They say it doesn't hurt her but I disagree. She cries while it is being cleaned. You can't hear her because she doesn't make noise anymore since she has the trach, but you can see her little face crying. You have to take off the ties around her neck and clean with a peroxide/water mixture all around her neck and especially around her trach. Then you have to use sterile water to rinse all the peroxide mixture off of her and then put her clean trach ties on and put her plastic "nose" on. The whole time you are doing all of this you have to hold her trach itself so that it doesn't come out. It takes 2 people to do all of this. The nurses all tell me that Camryn is the toughest one they have. She fights them and sometimes it takes 3 people to do her trach care. She is a tough little girl, lol. I haven't changed her trach yet though, just did trach care. I had a meeting with the Doctors, 2 nurses and the social worker yesterday about Cami's progress and things that we need to work on. I agreed that she needed a G-tube because with her ng tube (tube that goes in her nose) She pulls on it and I know that Cody will pull it out. It is uncomfortable and probably very painful to have it put back in time after time. So, I agreed to the G-tube placement- that way I can feed her straight to her tummy and then close the button and it is covered by clothing. So, I don't have to worry about anyone ripping it out. They did a mri/cat scan or something like that (I can't remember what they told me) this morning. The results came back that she has reflux (I already knew that) So they have started her on a medication to help with that and are also feeding her continuously to keep her tummy full all the time so that the acid doesn't build up. I don't know how that will work out when we go home- I guess only time will tell. Once she is over being sick I guess they will schedule her g-tube surgery. I also learned that some of that stuff that Cami will need at home to survive is not covered by her insurance. So, somehow we now have to come up with another $1300.00 dollars. I don't know how though. I don't understand why the insurance won't cover it either. However, the insurance will cover nursing 12 hours a day at first to help out. That will be very helpful with her trach care and stuff. It will be hard because she doesn't make noise- so if she is crying I won't hear her. I will have to look at her constantly to see if she is crying. I will have to get her on a feeding schedule and stick to it so that she won't be crying due to hunger. That will be hard though because at the hospital she is on continuous feeds so her tummy is never really "empty". I guess we will get it all figured out. Out of the $1300.00 needed to bring her home we have about $300.00 of it. So, we are in need of $1000.00 to bring our child home. I checked with the hospital about getting help there (financially) but they didn't have any program available. Apparently the insurance is paying about $11,000 already to bring her home. So, I guess that they feel that we can at least come up with $1300.00 I don't blame them though. It is life. If we can get all of the equipment needed, we may be able to bring her home maybe the first or second week of March. So, please help support us by donating for a beautiful pink "praying for camryn" bracelet from Melissa and beautiful ribbons by Tina. Part of the proceeds come to us to help Camryn. I promise you that the money is being spent on Cami. It is not being spent on us or Cody. All of the money donated will go to Cami- to get her home. I will post pictures of the Ribbons and Bracelet. You can go to Cami's facebook page "prayers for camryn" put that in the search at the top of the facebook page and you will find how to order them. Thank you all so much for your continued support & prayers. We love all of you. I am an animal lover- always have been. I would bring stray dogs and cats home all the time. I know my parents were not impressed with me. Once I was old enough to live on my own- I took in lots of strays. I had them spayed/neutered, gave them their vaccinations, had heart worm tests, gave them heart worm preventative, cared for them and found them homes. The ones that I could not place stayed with me. We spent thousands of dollars over the years caring for pets. That is why I have so many now- I love them- they are just like my children. a friend gave me this quote the other day and I thought I would put it on here. I was telling her how much I appreciated all of you standing behind us, praying for us in our time of need and giving us your hard earned money to help us keep our home. I was in tears with gratitude to all of you. The quote is this "Give and it will be given to you; good measure, pressed down, shaken together, running over, they will pour into your lap. For whatever measure you deal out to others, it will be dealt to you in return. Luke 6:38 NIV I have not looked this quote up- I just copied from her email. She was telling me that God sent you all to us to help in our time of need because we have always helped others in their time of need and that since you helped us- you will be helped in your time of need as well. If you could, I would appreciate you emailing me at christyfaglie@yahoo.com if you gave us a donation. Please email me with your name and address and if you could- the amount you sent us. The reason being is that I wrote down all the info in my spiral and it was torn up by a little 19 month old boy and I need the information. So, please email me with the information. Thank you all so much for your continued support. We love all of you very much. Remember to email me with the information. I have something that I want to send to you. Even if you did not donate money, but sent a card or letter- please email me. I hope you enjoy the pictures- I will put more under Cami's tab if I can figure it out. **Happy 6 Months Baby Girl, you are loved by many**

Love,
Kevin, Christy, Cody & Cami

Still No Internet Access

2011-02-13T11:28:00.000-08:00

Sorry, still do not have Internet access at the RMH. They still do not have the internet fixed. Camryn is doing okay though. I talked to the Doctor about putting in a G-tube so that she can eat. Right now she has an "ng"tube which goes down her nose into her tummy. I do not want her going home on that one though because She pulls at it and I am sure that Cody will as well and I do not want to have to put it back in repeatedly because it is not comfortable for her. So, I will update more on that later- I am at my cell phone company paying the bill and using their internet- so I have to go.

Much Love to you all,

Camryn Surgery Update

2011-02-11T17:22:00.001-08:00

Cami came through surgery okay. Sorry I didn't update earlier but the RMH changed internet carriers and we do not have internet currently there. I will update more later- having to borrow someone elses computer to do this. I took a lot of pictures so as soon as I can- I will post them as well.

Thank you for your prayers!!

Pictures & Surgery Update

2011-02-10T21:30:00.000-08:00

I was told tonight that Camryn's surgery has been moved to 9:45 am. So, I will be there very early in the morning to spend some time with my little superstar. She was soooooo happy tonight and I was impressed. The nurse mentioned that she had not been in such a "sunny" mood until I showed up. AHHHHH... I love my little Froggy girl :O) These pictures were taken tonight- her vision in one eye is coming back and I am beyond happy about that!!! She has to wear a patch on her good eye 3 hours a day to try and help her blind eye to work again. We shall see.... Well please keep my beautiful baby girl in your prayers (I know you do) Also, please keep a little boy named Samuel in your prayers as well- he went home to Jesus a couple of days ago and keep his mom in your prayers as well as she is not doing well at all. Also, keep Samuel's adoptive family in your prayers as well- they are hurting right now. They have lost their son.

I love all of you just as Jesus does. I do not judge and I am no where near perfect. My heart however, is always in the right spot.

Thanks for listening to my rambling. Please keep all in your prayers

Much Love

Surgery

2011-02-09T22:29:00.000-08:00

Cami is scheduled to have surgery again on Friday. I am not sure of the time yet though- they are supposed to let me know today sometime. The Doctor is going to go in and widen her airway again. This will be the second surgery to do this. He will be able to tell us how well her body "took" it the last time as well. I am praying that over time her airway will stay open so that we can get rid of that horrible trach. For now Sissy is just on blood thinners for her heart issue. Will talk more about that later- I have got to get to bed now.

New Blog Design

2011-02-07T20:59:00.000-08:00

Just wanted to let everyone know that my new blog was designed by Christie at http://bushelpeckdesigns.blogspot.com/

She does wonderful work (as you can tell by my fancy new blog) So, if you are interested in updating your blog and please let her know that I sent you her way.

I absolutely adore my new layout. It is so clean & uncomplicated.

Thanks Christie for all of your hard work!!!

Cami's Heart

2011-02-07T05:52:00.000-08:00

I received a call at 5:21am telling that Cami has had a really rough night. She has been transported back to ICU. Cami was born with a hole in her heart on top of everything else and apparently while I thought they were staying on top of that- well, they weren't. She has the jerk cardiologist coming to see her this morning that I paid $1628.00 for her to see out of pocket when we were between insurance companies. Please keep her in your prayers- thanks

Grieving

2011-02-06T20:47:00.000-08:00

I have been pretty wrapped up in my own life for quite some time. Enough time that I just noticed today that a very sweet little girl has lost her fight with Leukemia. I have been following this blog for a few years now http://thedailylois.blogspot.com/ Sweet Lois passed away on Feb 3rd. Rest in peace sweet baby girl. Fly with the Angels sweetheart. My best friend lost her little girl Chloe to Leukemia as well on 8/15/07. Chloe had just turned 2 in July of that year. Though Kristy is strong and knows that she will be with Sweet Chloe again I know that she still deeply mourns her passing. So, if you do not mind- please visit Lois's blog and offer a comment to her grieving family.

Thanks,

Christy

Time Flies

2011-02-05T16:31:00.000-08:00

My favorite picture of me & Cami- she is so beautiful :)

Sorry I have not updated in a bit. It was not a purposeful evasion- more of a 19 month invasion, lol. Cody has been with me all week which means that my internet time is about zero. I haven't talked about Cody in quite a while. He is a very active little guy and when he is around- my attention is on him. Since we are at the Ronald McDonald House it is even more so since our room is small, he doesn't have all of his toys, no dogs to play with and no yard to roam. Today was my nephew Michael's 1st birthday party. I took Cody and he had fun and he got to run around in my brother & sil's back yard and it wore him down a bit. My mom and step dad took him afterward so that I can spend some time with my baby girl. Birthday parties are still hard for me though. I now have children, but my sister does not and I know that feeling entirely too well. So, my heart hurts for her and all of friends who face infertility issues as well. I haven't seen Cami in 3 days. Why? well because for 2 days I didn't feel well and then Cody did not- so I could not take a chance with Cami's health. I will be posting new pictures tomorrow though so that you can see her in all of her glory. Not sure if I posted it here yet- but Cami was moved from the ICU to the IMC. So, that is great news!! Still not sure how long she will be there- but it is a step down so that is great!! Well, will update again later.

Difference

2011-02-01T18:36:00.000-08:00

The difference in my kids is quite significant. We knew before Cami was born that she would likely have learning issues and be behind. I guess I just didn't know how much. While things have come easy to Cody- Cami has to fight for everything. I guess that is the way it will always be. Do I love her less or any differently than Cody- of course not. I thank God every day that he gave Cami to me because she is truly a blessing to us. We Love her and are happy to be her parents. I am happy that Cody will be there for his sister (I hope he will) However, with that being said I hope that Cami will not have the trach very long. I hope that her body wins this war and that the trach will be removed.

House-check Cami-check

2011-01-31T20:43:00.001-08:00

Wanted everyone to know that the house has been paid in full (well until tomorrow when another payment is due,lol) However, we can pay this late. I want to thank every one of you who have prayed for our family, those have donated money to save our home and to those who have done both. I appreciate it very much and I am happy to have all of you as my friend. I start training tomorrow on how to take care of Sissy's trach. It has to be cleaned 2 times a day and changed once a week. It is going to take some getting used to on my part so that I don't make her vomit. Her trach causes a "gag" reflex, poor baby. I hope you all enjoy the pictures. I am missing my little man like crazy, but he is being cared for at his grandparents house and I know he is safe. I can't keep him and learn how to help Cami at the same time. I did have $14.50 left of the money that we were given. I am putting that in Cami's savings account to help her. I am not ignorant- I know that we all have a long journey ahead of us with Cami's health- but I will be right.there.behind.her. I find out tomorrow what "tools" I will need to care for Camryn. I will as have a helper come out when she finally goes home to help me. I will need this for sure as it takes 2 people to change Sissy's trach. I will be honest and say that it scares me to death.

House-check Cami-check

2011-01-31T20:43:00.000-08:00

Cami

2011-01-29T16:29:00.000-08:00

Since I am not feeling well I cannot go and see Cami today. I have a fever and cannot take a chance of getting her sick. So, I have called there a couple of times and she is fine. My arms ache to hold her again, but I have not been able to since she had the trach placed. I have to learn how to change her trach this next week and how to clean and change the ties 2 times a day. It takes 2 nurses to do this- all the while my sweet innocent baby cries silently. That comes with the trach- I can no longer hear her cry. It breaks my heart that she is like that- but I can't do anything about it. I am a ferocious mama bear when it comes to my kids. Poor Cami has never had it easy and I suppose she never will. So,I can't go and visit her tonight because of my fever. Kevin did go and visit with her and she vomited on him- part of the trach- if she moves her head too much she vomits. I put up a new chip in with the amount still owed. We have almost enough but they want the January payment as well- so we are still short. Please keep Cami in your prayers- the sweet baby never did anything to deserve this.

What is still needed

2011-01-28T12:23:00.000-08:00

With the newest donations we only need $1181.28 left to pay the mortgage in full......very, very exciting. We are almost there!! I do not know how to add more time to the chip-in. SO, once this one is over I will start up another.

Pictures & Updates

2011-01-27T13:53:00.000-08:00

I went to visit my beautiful daughter last night like I always do. What was different last night? Well.... I think her vision is somewhat coming back. I played with bright musical toys and whereas she used to look around and kind of "try" and find them with her hands, last night she DID find them with her hands on a couple of different occasions. This could mean different things... it could mean that her "seeing" with her ears is getting better or it could be that our prayers are being answered and that she is "seeing" with her eyes- if even just a little bit- it may be happening. I pray that this is what is happening- I hope that she is actually seeing with her eyes again. I didn't have my camera with me last night, I only had my cell phone to take pictures and so, they aren't perfect but I wanted all of you to see what I was seeing. I hope you enjoy these pictures as much as I do. My strong little fighter may just be coming out of this blindness :O) :O) :O) Also, where we were $1402.00 short on the house we are now just $1258.06 short after 3 donations came in through pay pal yesterday. We got $100.00 and 2 $25.00 donations yesterday- so after the pay pal fees were taken out- we are down to $1258.06. God is good and so are all of you for your wonderful prayers and greater donations. I truly love all of you for all that you have done and are doing for our family. Being that I have always been on the giving end with prayers and donations- it is hard to be on the receiving end- but I must say that when you offer unselfishly, it does come back when you most need it. Those of you who have never met us in "real life" but are giving us what you can- whether it be prayer, financial or just keeping us in your thoughts- we completely understand that you are giving what you can and it is so very much appreciated. I give you my word that all of the money coming into our family is going to save our home and any that we are able to raise over that amount will also go into saving our home as well- we will pay all monies that come to us for our house- to our house. I am hoping that we get enough to not only keep us out of foreclosure- but to make a couple of extra payments so that we are "ahead" as well. We have had 2 large donations one was $1000.00 and one $4500.00 and a lot of smaller donations of $10.00, $15.00, $20.00, $25.00, $50.00, $70.00, $100.00, $200.00 and 1 $300.00 from a girl I went to high school with. All donations are so very helpful- no matter what the amount- we are grateful. Because of your selfless acts in giving- you are going to be responsible for saving our home. Pat yourselves all on the back for all of your help to our family. We truly believe in all of you and if there is anything that I can do for you- please let me know. So, I hope you enjoy the pictures of the kiddo's in the last few days. Cody had a friend come and visit him as well. Natalie is my friend's name- we met here at the Ronald McDonald house the first time we stayed here. Natalie has a son named Caleb who has autism and some other issues and she was here for quite a while. Well, she has a daughter named AvreighFaye. Well, Cody and AvreighFaye were born just 2 days apart. Cody was born on 6/26/09 and AvreighFaye was born on 6/28/09. Cody and AvreighFaye became fast friends and though they haven't seen in other in quite some time- they picked up where they left off- they are the same height, have the same color hair and same coloring- so, people assume that they are twins when we go walking. They are too cute together.

Camryn looks so much better

I love all of you. So. much.it.hurts.

I hope you all enjoy the pictures of Camryn, Cody & AvreighFaye- they are all so cute together.

Updates....

2011-01-25T09:23:00.000-08:00

I want to start this post out by saying just how much I appreciate all of you. I appreciate your concern for our family- though many of you have never met us in "real life" before. I appreciate all of the love and concern that your emails, letters and cards have shown me. Someone who has become very dear to me in the last couple of weeks wants me to post how much money we still need to pay our house current. I pondered this because I hate to ask for anything- but on the other hand I want everyone to know just how close we are. We have gotten so many donations big and small and one very big. We only need $1402.00more and we have all of the money that we need to save our house. Yes, we needed about $7k and we are down to $1402.00!!! I prayed several times a day that we would be able to save our home and we are that close!! Camryn is doing fantastic as well!! We may even get moved from the PICU to the IMC by next week sometime! I will write more in a little bit- my son is trying to use the keyboard at the same time I am and it is not working out so well for either of us, lol.

My Amazing Baby Girl

2011-01-22T13:39:00.000-08:00

Camryn had the first of many upcoming surgeries yesterday. Her ENT is going to slowly re-open her airway. Yesterday she did like a champ- he had to go in to open the airway again and stretch it just a little bit. In about 2 weeks she will go back to the operating room and slowly stretch it again. There is a little cutting involved, but not too much (we hope it continues to stay that way) Cami woke up a couple of hours later and was just as happy as usual- like she didn't have anything done at all. She is such a little champ! I am so proud of her. Her little lips are so full- I have very skinny little lips but Kevin has very wide full lips. She has my shaped lips, but they are full like Kevin's. They are so cute- just like the rest of her. She just kept making bubbles and sticking out her tongue. I was just watching her in awe. She also has a little blue orthopedic chair that OT uses with her. She was in there for a while yesterday. I wasn't there when she was in the chair I had to go and buy Kevin a new cell phone since his broke. Since he is so rough on phones- I just bought him the least expensive phone they had. So, a little flip-phone is what he got and it works just fine. We broke away from the hospital last night and went out to eat at Red Lobster. We put to good use our gift cards that we got in December. It was so GOOD!! I love seafood :O) I worried about Cami the whole time though which I figured I would. I was just a few minutes down the road but none the less, worried. I got a jury duty summons in the mail the other day, I called them and explained that I have a child in the PICU and they just need a letter from the hospital stating that Cami is there. I got that yesterday and I am faxing it to them in the morning and also mailing a copy because I want to be double sure that they get it. Cody is doing fine, I am so happy that he is so healthy because it would be entirely too much to handle if I had 2 little ones that were sick. I know that there are people who are able to do it though.

Surgery Update

2011-01-21T11:11:00.000-08:00

Just a quick update to let you know that Camryn came out of surgery fine. I will update more later

Christy

Tonight

2011-01-20T20:47:00.000-08:00

Cami had an okay day. She was up off and on and sat in a an orthopedic chair for a few minutes. She goes into surgery tomorrow at 11:15 am cst. Doctor is going to try to widen her airway. This will be one of many surgeries to try and widen her airway so that we can hopefully remove the trach and Miss Cami can breathe through her nose and mouth like she used to. I want to say "thank you" to those of you who have mailed me letters, cards & donations. It means so very much to us that you went out of your way to write us a letter or get us a card- we truly appreciate it. The donation will go toward our home. Thank you to every one of you who have sent donations to us. I haven't thanked you individually and I apologize. I just have not really had my mind in the right place. You are all so great and giving. I can't believe my chip in either- all of my wonderful friends! You are all wonderful- we are overjoyed and cannot believe that our home will probably be saved. There is also a fundraiser going on now for Camryn that I am sure you would be interested in. A fellow online friend is making ribbons, key chains & cute little tu-tu's and 75% of the proceeds come to us. The website is http://momscouponswap.blogspot.com/2011/01/scarlett-and-camryn-fundraiser.html I hope that you will support us. She is so nice to do this for us. There is also another online friend who haso ordered bracelets that say "praying for camryn" on them but they are not in yet. Once I get more info on them I will post it. Thank you all for everything- we love and appreciate you all. Also, about her looking at me- when we talk to her she will turn her head our way. She definitely responds to the sound of my voice. That weblink again is

http://momscouponswap.blogspot.com/2011/01/scarlett-and-camryn-fundraiser.html

Camryn Jean

2011-01-20T12:38:00.000-08:00

Pictures

2011-01-20T12:13:00.000-08:00

Cody & Cami

2011-01-20T11:40:00.000-08:00

Cody is facinated with keys. He knows that they work in cars and in the Ronald Mcdonald house you have to put a key in the wall to turn on the electricity- so, when we walk in he turns and looks at the wall. He is too smart- I love him so much. Cami was awake last night when we went- she is getting used to the sedation meds- so she is beginning to wake up.

My Amazing Monkey Cody

2011-01-20T10:52:00.001-08:00

Pictures are out of order apparently- I didn't put them in correctly. I love this boy with all of my heart. It took us 7 years to have this little one. 7 years of infertility- but we kicked infertility's butt!!

Cami

2011-01-19T16:12:00.000-08:00

About Camryn.... I called to check on her this morning and found out that her ventilator failed. She had to have a new ventilator brought in and was bagged in the mean time. I thought they lost her 3 times, but now that I have talked with them again (while I was more calm) I found out that she was only really "lost" once. They had to bag her quite a bit- but with her trach I guess things are a little more difficult. We did not receive a call- not on my phone, Kevin's phone or the room phone. They said that my number was called- but I don't show it. Also, there isn't a message. I went to see her and she is still sedated. Her little chest is still red - but that is to be expected. She is still alive though- my little girl is tough :O) I will post more pictures of her later. Thanks for caring about Cami and our family. Cami was born via c-section on August 18, 2010 at 9:41pm She weighed 3lb 15oz and was 16 1/4 inches long. She was born at 31 weeks to the day (9 wks early) We knew about the Hydrocephalus when I was 16 weeks pregnant. We didn't know about her other issues until after birth. I love my daughter any way that she is. I know that some people would not want her because she is "disabled" but I don't just love my children. I am IN LOVE with my Cody & Cami. Since her hospitalization- she has developed a ton of brain bleeds, has gone blind, started having seizures, one lung collapsed due to the machine, etc. She has had several surgeries/procedures and she is still here. She was weighed 2 days ago and weighed 12lbs 5oz. She weighed 11lb 8oz the day she went in. So, she isn't gaining weight very well. She has lost her "suck" reflex as well. Camryn is very sick, but you know what? I LOVE HER!!!

Christy

Pictures Before Now

2011-01-18T17:52:00.000-08:00

Cody, Cousin Julia & Cami

Mommy & Cami

Cody & Cami

Mommy & Cami

My Beautiful Baby Girl

I just thought I would put some pictures from a happier time. When Cami wasn't hooked up to machines and things were "normal"

Happy 5th Month Cami

2011-01-17T22:17:00.000-08:00

Happy 5 Months Camryn Jean. As of 9:41pm on 1/18 she will be 5 months old. I love you more than life itself baby girl. You are everything to mommy and daddy. You own our heart along with your brother. Happy 5th month sweetheart- we all love you.
It is hard to have you in the hospital yet again baby girl- but we are dealing with it. You don't know it, but you have a whole army of people behind you- all praying for you. You have so many friends that you do not know yet- but they know you my angel. Mommy and Daddy tried for so many years to have you and your brother- we prayed and prayed and prayed and our prayers were answered. Now we pray and pray and pray that you will be healed. You not only have our prayers but so many other peoples prayers as well. You are so very loved baby girl. Sleep tight and have good dreams baby because we are all fighting for you.

Love Mommy, Daddy, Cody, Memaw, Papaw, Papaw, all of your other family members and all of your prayer warriors- there are too many for mommy to name- maybe they will wish you a happy birthday too.

I am...

2011-01-17T12:48:00.000-08:00

1. Tired- emotionally, physically... just tired.
2. Depressed- mind & body.
3. Worried- about my baby girl & my finances
4. Hurting- my back is killing me & fibromyalga is acting up severely
5. Hopeful- that my sweet little girl will get better
6. Praying- that with all the prayers going around that our family will be okay
7. Believing- in our Heavenly Father- that he will care for all of us & our finances.
8. In Awe- of the community that has rallied around us
9. In Love- with each and ever one of you who have prayed for us, given time to us or given a donation to us.

10. Last but not least- If you read this- please leave a comment letting me know how you are feeling today. Your comments make me feel better- I read them to Cami- so please, if you read this- leave a comment.

Someone emailed and asked how much we needed to save our house. The total needed is $6,567.89 we have a total of about $1900.00 after paypal fees in my chip in. (that could be a little off because I don't have a calculator in front of me and I already transferred some to our savings account) I deposited $400.00 in checks that were sent to me so- we have about $2300.00 right now. Which leaves us $4267.89 in the hole. Kevin and I can come up with a thousand of that- so we need $3,267.89 to keep our home. We don't have a problem making our monthly payments- we just got behind because of the thousands of dollars that we had to pay for Cami to see her specialists and for her Mri's that were mandatory- we were threatened with cps being called on us if she didn't go to all of those appointments- so we paid for them so that we didn't have to deal with social services while we were between insurance companies. That is what happens when you lose an insurance company because it goes from $600 a month to $1400 a month. Had I known that it would have cost a ton more than $1400 in a few weeks- I would have paid cobra- but hindsight is 20/20.

Love you all,
Kevin, Christy, Cody, & Cami

Pictures from Tonight

2011-01-16T22:52:00.000-08:00

Here are some pictures from tonight. It hurts me so very much to see my daughter in this situation, but there isn't anything that I can do for her but pray and be there for her. I talk to her, I rub her little hands and legs and rub her forehead. She loves her forehead to be rubbed- always has. Per the rounding Doctor- the ENT is going to take Cami back into surgery late in the week to try to widen her airway. When I find out more I will post it. Thank you all for following along, thank you for praying, thank you for sharing our story and thank you for your donations. Everything means so much to us. If you are on facebook- you can search for "prayers for camryn" and join the group that was set up for her- it is great. Also, a beautiful button was made for Cami and it is below in another post if you would like to post it on your blog. Well, I hope you enjoy these pictures. My facebook name is Christy Crowder Faglie and if you send me a friend request I will accept. Much love- The Faglie Family

My Little Mr & Miss

2011-01-16T08:49:00.000-08:00

Cami has had a rough couple of days. She is in pain from her trach surgery and though my arms ache to hold her- I cannot due to the trach. Kevin stayed at the hospital last night so that I could actually get a full nights sleep. I have been at the hospital for 3 days/nights straight and it was starting to wear on me. I was happy that he offered to go over and stay last night so that I could leave and get some laundry done and catch up on sleep. However, I still felt awful because I am her mom and shouldn't need a break. I don't need a break from her, just the hospital. I miss my son very much, but since he isn't able to be in the PICU- it is easier for my mom & step dad to keep him so that I am able to spend as much time as possible with Cami. I am very thankful to them for keeping Cody during this time. I know he is well cared for and loved and that he isn't suffering while there. Without them I do not know what I would do to be quite honest.

I hope you enjoy these pictures- they are some of my favorites. I wanted "happy" pictures today.

***Also-for those of you on facebook, a very nice blog reader named Melissa created a facebook page for Camryn. It is called "Prayers for Camryn" if you would like to join. Just log into facebook and search for "prayers for camryn" and request to join the group***

A BIG Thanks to you Melissa for doing this- I am so very grateful for everything that everyone has done for our family. From donations to help us keep our home, to blog buttons, to facebook pages, to posting the buttons on your pages to telling our story. I never thought our story would get out there like it has and we truly appreciate it all. I love all of you and I hope that you know that your help is appreciated. If you have done a kindness to our family and I haven't mentioned it- I apologize- my mind is all over the place these days. Please know that I do appreciate each and every thing that is done for our family.

Blog Button

2011-01-15T12:49:00.000-08:00

I want to say a HUGE Thank You to Rebecca for making a blog button for my blog. She did this free of charge for Cami & our family and I am very grateful to her. Below is the instructions of how to add it to your blog if you would like.

1. Log into Blogger dashboard.
2. Click on "Design".
3. Go to the page where you can add and arrange "page elements".
4. Open a new "gadget" box.
5. Click on "add html/javascript".
6. Copy and paste this ENTIRE code in that box. Don't change anything about the code or it won't work!

7. Click "Save".

If you have added it correctly, it will show up on your blog with a scrolling text box below the actual button. If you hover your mouse over the button, you will see that you can click on it and it will take you to Christy's blog. You WANT this to happen! :) This way people can link to Cami's story, and they can grab the code in the text box and add it to their own blogs.

Cami Now

2011-01-14T13:19:00.000-08:00

The top two pictures of after surgery, then a picture of my handsome little man, then the last two pictures are of my sweet little Sissy the morning before trach surgery.

I want to thank all of you for your continued prayers for our family. Your prayers have helped our family in so many ways. My daughter is alive and well thanks to Jesus listening to all of your prayers. Sissy was in a lot of pain last night and so far today. She is on Fent*anyl and Ver*sed. Fent*anyl for pain and Ver*sed for sedation. She is requiring a lot of both of them to help her, it is because she was on both of them for so long while there so it is requiring the use of more than before. My heart is broken for my daughter. The game plan is to let this heal up a bit and then go in and try to widen her airway since with the trach she will have a way to breathe. Just keep her in your prayers please.
Please keep my son in your prayers as well because he is not getting much "mommy" time lately because my parents have been keeping him a lot so that I can spend time with Cami. Thank all of you for your donations as well- it is really helping me to get through each day knowing that more money is coming in and hopefully we can keep our home. If any of you have any experience with working with trachs- please email me christyfaglie@yahoo.com because I don't have any knowledge of them. She has a "shiley" trach if that helps.

Surgery

2011-01-13T13:40:00.000-08:00

Just a quick note- Cami came through surgery okay. She s now being intubated again for 7-10 days so that she doesn't wiggle around or move so that it doesn't get messed up. Will update more later. Thank you all for your prayers!!- They seriously did work! Also, Thank You, Thank You, Thank You for all of your donations. It is heart warming- we may just be able to keep our house.

Not Even Sure How To Begin...

2011-01-12T17:50:00.001-08:00

Camryn is sick. She is literally close to death right now.

1. Camryn is now Blind
2. Camryn now has seizures
3. Camryn has tons of brain bleeds
4. Camryn has a collapsed lung
5. Camryn probably has more that I can't remember right now

Last but certainly not least...

Camryn has to have a trach placed tomorrow. Why? you ask... Well... Cami is having trouble breathing without a machine doing it for her now. She has oxygen on at all times but her sats are not good. She is on heliax (sp?) and Comfort Flow to help her. She had a procedure yesterday and I got to see the horrific pictures of the problem. Due to the breathing tube she has a ton of scarring in her throat and now only has an opening the width of a needle to breathe. Camryn cannot get in enough oxygen. So, I was given 3 options. They are as follows...

1. Do the surgery to try and repair the damage
2. Put in a trach
3. Let "nature take it's course" ie- let her suffocate to death

#1- Sounds great right? Well, not really because while he is cutting away- Camryn is getting no oxygen at all. So, she will die.
#2- The trach- I hate this option- but it will save her life.
#3- Not in this lifetime- I will die first- as in "over my dead body"

It is scheduled for 12pm tomorrow unless they have to do it by emergency before then. Please keep her in your prayers because I don't know what I will do if I lose her. I CAN'T LOSE HER. I.would.rather.DIE.

My Ob/Gyn has prescribed me Z*oloft and X*anax to deal with this. There isn't a pill in the world that is going to fix this. I can't believe my life. I am very MAD right now. I would do ANYTHING to be in her place. I would trade places with her if I could- but I can't. I feel responsible- I brought her into this world. I WANTED A CHILD FOR SO DAMN LONG and I finally got them and I don't know what I did, but I did something because Cami is is DYING right in front of me!! I have to stay strong for Cody. I have to stay strong for my husband. My husband despite being over 6 foot tall and being able to lift over 300 pounds is not able to deal with this. He leans on me- I am about to BREAK. This blog is my only outlet- so I apologize for being so negative, but I have to get it out before I SNAP and hurt someone. I am ANGRY at the hospital. I am angry at a nurse who had the nerve to try and touch me. She didn't like the results. I am just sorry to Cami and Cody.

Christy

Oh My Heart....

2011-01-07T23:17:00.000-08:00

My dear readers... You are making my heart so very full!! have to admit I didn't know how the chip in would turn out. I hoped for the best because I knew that $6,000 was so much money to come up with and my beautiful readers have made donated $1000.00 dollars to me already. I have $710.00 in my chip in and a beautiful reader named Kathy sent me a check for $300.00, another beautiful reader who doesn't want to be named so we will call her and her husband A&N, well they sent me a check for $25.00. Paypal takes their cut of the donated money, so we have about $1000.00 so far donated. So, that just leaves $5,000. We really have to come up with $7000.00, but Kevin and I can come up with $1000.00. That is why I only mentioned $6,000. Anyway, thank you to all who have donated. I received an email telling me that I needed to put the address in a new post so that people didn't have to search to find it to mail a donation. Here it is..

Christy Faglie #28 C/O
Ronald McDonald House
1315 Barbara Jordan Blvd
Austin, Tx 78723

I appreciate the donations more than any one will ever know. I hope that I am able to raise enough to save our home. I truly don't know where we would go if we lose our home. Cami was sleeping most of the day away. Tonight (when I remembered my camera) she stayed asleep until they did a breathing treatment, then she woke up.. but just for the treatment and then started having withdrawal symptoms- so I yelled for the nurse to come and she brought more atavan and gave it to her. So, that knocked her back out so all my pictures are of her sleeping. However, she looks beautiful sleeping or awake. Though I would have loved to see those beautiful eyes.....She had an MRI again today- I should find out the results of that tomorrow. Well, enough for tonight- I have to go to bed. I hope you enjoyed the pictures.

Love you all,
Christy

2011-01-06T21:34:00.001-08:00

Pictures of our baby girl tonight. She is so beautiful! My own little Angel :O)

*WOW* When I got on here to post I had $495.00 in my chip in account. I uploaded new pictures of Cami and went back into my blog and it grew to $595!!! $100.00 I am so excited! I just know that we are going to be able to raise enough money to save our home! I received two checks in the mail today. That was very nice of those two people to send them to me. Thank you very much!! Thank all of you who have donated to help us save our home. We love you soooooo much!!!!!!!!!!

$6,000 is a LOT of money to come up with. However, We are slowly doing it!!! So much money had to pay for Sissy (Cami) to go to her Doctors when she first came home and she didn't have insurance. She only had one Doctor that would see her without being paid up front or by having insurance and that was Dr Har*per at Aus*tin Ret*ina. He was wonderful. However, the rest threatened me with CPS if I didn't take her to the appointments. Before she was released from the hospital her case manager made all these follow up appointments- well Camryn lost her insurance right before getting released. We were trying to get more insurance (none of us were covered) but it took a while. I called to reschedule the appointments and was threatened with CPS being called on me because I would be "endangering my child" if I didn't take her. So, I took her. Appointments cost anywhere from $300 - $1200 and I took her. That is why we got so far behind. Then some places we had to go would charge us $50.00 for them to see her for 5 minutes!! On top of that- we live in the country and the appointments were made so that she had to be in town 3-4 days a week and it would take like $40.00 in gas each day. She has now had insurance for over a month- she got it 3 days before she was hospitalized this time. Thank God she got insurance before this all happened. That is why we are so far behind on our mortgage and everything else. I don't care about anything else except our house. So, if I can come up with that- I am beyond happy. I am going to be a surrogate for my sister-(when she can afford it) We aren't using an agency of course because an agency charges our the wazoo. I am thinking of offering to be a surrogate for someone besides just my sister. When I was going through infertility - I begged God to allow me to be a mom and told God that I would help someone else- I am willing to help. I just don't want to lose my house. I will write more later.

Love you all- thank you so much for caring!!!!!!!!!!!!!!

Thank You

2011-01-05T14:47:00.000-08:00

I wanted to say THANK YOU for all that you have done for us. You have all done so much, that I can never repay. You have given us your hard earned money, you have posted our story on your blogs, you have told your friends about us. I appreciate all that you have done to help us. You have added tons more prayers for my daughter that she would not have gotten without you. You have helped my daughter get better. Yes,....... YOU> >>> not me, but YOU. You have done so much. When I logged on and saw that there is now $445.00 in our chip-in account now. That is money that I never would have raised without YOU. I have gotten P*yP*l to remove their $500.00 a month limit. (at first I could only transfer $500.00 a month from their account to my bank account) So, now I can transfer however much money I get to my bank account.

Yes, I know that we still have $5500.00 more to go- but you know what??? I am starting to believe that it is possible.

I know that anything is possible... I have 2 children that I cried and begged God for... for years. I went through painful procedures, fertility treatments and all in between but in the end-God blessed me with my miracles.

I would love to talk to you, email me christyfaglie@yahoo.com

Thank you all, I love you all!! God has brought us all together I am hoping that with all of our prayers, that my sweet baby girl will be cured and will able to come home to her HOME. So, please remember to say a special prayer for Cami tonight. Thanks!!!!!

Updates

2011-01-03T11:25:00.000-08:00

Cami is doing pretty darn well right now. The Doctor is making sure that she isn't having withdrawel symptoms anymore. I am sure that they slip in every so often, but they are not part of her normal everyday life. She is an amazing child. She has been through so much and is still here. Most likely she will be mentally retarded (per the neurologist & neurosurgeon) and right now she is blind. I am hoping the that blindness may correct itself- but I am not holding my breath. I can handle her mental retardation and I can handle her being blind if that is what God has in store for us. It will be hard- but we will get through it. She will have a hearing screen before we leave the hospital and they will tell what her hearing is like. I pray that her hearing is good. Please pray that her hearing is good.

Cody is doing great.... spoiled as usual & always. Always wanting 100% of my time. I am just grateful to God that Cody is healthy. He is my little man- he is so smart and knows so many words all ready. I am hopeful that Cody will help Cami through out life. I hope he is a good big brother.

Kevin is doing okay. He is working and sleeping these days. He did go to my dad 's yesterday and helped rerun electric wires because my dad's house is older and the wires were bad. At first no one would help Kevin (My dad is disabled and couldn't help) However, once Kevin started it, he talked enough mess to my brother that he got him to come over and help and talked enough crap to my sister and brother in law that they helped (sister & brother in law live with my dad)

Me- I am okay. I am stressed of course about the house.... I enjoyed holding my daughter the other day. I love her so very much, it is hard to let her go.

We have $320.00 towards our house so far. That only leaves $5680.00 to come up with. Kevin and I can come up with $1000.00. I am not sure if anyone has mailed anything to us for the house, but if they have i will tel ou to let you know. I know a couple of people have told me that they can help with a few dollars, but I don't have a "set" amount- so I don't know. I know that we can do this- I just hope that we do.

Anyway, will post pictures in a bit- I left my camera at the hospital.

Thank all of you for our prayers for my sweet girl, without them I don't know where she would be.

Thanks again for everything that you have done for us, we love you all.

Christy, Kevin, Cody & Cami

Happy New Year

2011-01-01T00:00:00.000-08:00

I want to wish all of you a very Happy New Year. To my friends who are dealing with infertility right now- I hope that 2011 is the magic year for you. I hope that all of your dreams come true this year. If you are adopting and waiting for the call- I hope the call comes soon and you bring home your little boy or girl. I hope you will write the whole adoption story for all of us to read, I can't wait to read about that little baby coming home with their beautiful mom. If you are trying to get pregnant- I hope that you get that positive pregnancy test this year and I hope to read your birth story as well. I hope that you bring home your little boy or girl all wrapped in a warm blanket held by their beautiful mom. You are all on my mind and I pray for all of you. For my friends who have their miracles- congrats and never forget just how lucky you are to have them in your life. Treasure your children because they are just that- a treasure. My children are my miracles- I love them so much it hurts.

Camryn got a bath tonight- it was her first since all of this mess began. I got to hold her for an hour tonight!!!!!!!!
Cody is at my mom's until tomorrow morning, I miss that little man. However, I can't see Cami as much when he is here- so it is a no win situation.

Thank you all for you donations to us!!! I have over $300.00 in my chip in to help save our house- thank you all so much. If you have mailed a check or money order to us to help- thank you as well. I haven't gotten any for the house yet- but I just posted. If you do mail something- please let me know because a lot of times the volunteers deal with mail and it doesn't always make it to our rooms in a timely manner. I can't tell you how much I appreciate your caring for us. We appreciate it more than you will ever know. Six thousand dollars is a lot of money to come up with in the next few weeks- however, we may be able to do it. I don't know how- but I have been praying and I know that GOD is listening- he has sent my wonderful readers to me. I have readers that have posted our story on their blogs to help and I appreciate it more than any of you will ever know. I will do whatever I can to help any of you since you are helping me. If I can just get my house caught up and my daughter out of the hospital my life will be good again. If we could get the whole lump sum we could pay it back, but we can't get a loan because we are behind on the house and our credit is not looking good so the bank doesn't want to give us a loan. I don't know what to do... Oh well, I will leave it in God's hands and pray that we are not homeless. **also, they weighed Cami tonight and she weighs 12lbs 3oz!! The day she went in she weighed 11lb 8oz- so she is gaining weight now and it isn't fluid!**
My email address is christyfaglie@yahoo.com if you would like to email me
I love you all,
Christy

Feelings

2010-12-31T11:27:00.000-08:00

My children mean the world to me. When Camryn was hospitalized this time I was devastated. Then when the neurologist told us that with all of her brain bleeds that she would most likely be mentally retarded my world spun out of control. However, on the outside no one knew that I was falling apart. I am good at holding up, I have to. We were also told that she may not make it. I knew that it was up to God, so again I stood upright without falling- even though inside I was dying. I was falling apart.... How was this happening to my beautiful baby girl? Why was this happening? She had not done anything to deserve everything that was thrown at her in her short months on this earth. Then I started to blame myself again... I didn't know what I did, I just knew that I must have done something to cause all of this grief on my innocent little baby girl. I have been told many times that it isn't my fault- but you can't help but blame yourself when your baby is born with 3 birth defects. She has hydrocephalus, holoprosencephaly & a hole in her heart. She has known nothing but pain in her life. I have problems dealing with that. Anyway, I was looking for a song for her that would explain how I felt about her. I couldn't really find one. I prayed for her one night, went to bed and woke up about 3am. I got online and just typed in "God's Gift" Because Cami is a gift from God. Anyway, I found a song!!! It fits perfectly- It is called "God's Gift" it is by Hannah Jane Snoot. You can visit the website at www.hopeforemma.com to listen to it. Hannah has a daughter with special needs and wrote a song for her. I LOVE it!! I wrote to her because I wanted that song on cd. I told her about Cami and that the song felt perfect for us. She sent me the cd and would not accept anything for it. I am not sure if she will read the blog- but if she does. Hannah I want to thank you! The cd has arrived and I love it. The song is perfect!

Chip In with update

2010-12-30T17:00:00.001-08:00

A few blogger friends recommended that I put a "chip in" on my page. So, I did. Dear readers, do not feel that you "have" to give to us. It is there is you feel led to, but do not feel that you have to. I feel horrible honestly. Per paypal I can only remove $500.00 a month from it. If you would like to help us you can mail a money order or check to us as well.

Christy Faglie C/O
Ronald McDonald House
1315 Barbara Jordan Blvd
Austin, Tx 78723

Please don't feel that you have to send or give anything- prayers are helpful as well. I just had a few of my sweet readers tell me to do this so I am. I have never had to "beg" before and it is very humbling to say the least. We can afford our current bills but we can't come up with the past due on the house and that is what is killing us right now. Poor Camryn had so many appointments when she came home and we had to pay cash for a lot of her appointments because she wasn't covered on our insurance. Then once she had insurance the copays were $50.00 for her specialists that she had to see 2 + times a week. Those of you who have read my blog for a long time know that Camryn has hydrocephalus & holoprosenscephaly. The poor baby is sick- so she had to see neurologists, her neurosurgeon, internal medicine, had mri's, eye doctor & more. Anyway, the chip in is there- if you feel led please help. If you cannot help financially- please say a prayer for my sweet baby girl and include my son in there as well that he stay healthy.
***Sissy is going through withdraw pretty hard right now*** I have watched her little body shake and it is awful!! They lowered her withdrawel medicine- they gave her more 2 times today when I was there because I demanded it. I am meeting with the rounding Doctors tomorrow because this is UNACCEPTABLE to happen to a 4 month old baby. She is innocent in all of this! The pictures are during withdrawel... they are awful
God Bless,
Christy

What to do?

2010-12-30T12:44:00.000-08:00

What do you do when your stress level is at an all time high? We are going to lose our home. There I have said it. I have lived there for 11 years- it is home for me. My husband moved in more than 8 years ago, my son was brought home from the hospital there as with my daughter. We are happy there. However, due to my not working, Cami's expensive health issues, vehicles breaking down, house a/c breaking, emergency vet bill(s) owing IRS, paying to keep health insurance. We are broke. We can pay our current payment just fine- we just cannot catch up our back payments now and the bank will NOT work with us. They want the back payments. My blood pressure is through the roof, my bp meds are not helping. I am having a hard time eating because my stomach feels yucky all the time. I guess I am just having a pity party for myself. I am sorry that all of you have to hear/read this but I have to get it out somewhere and this is where I have to do it so that it doesn't come out in my everyday life. Where will we go???? I do not know. I have some injectible fertility meds in my fridge that I guess I could sell, but I don't know if that is even legal. I have lots of C>L>O>M>I>D as well. It took lots of money to have kiddo's. However, like a lot of us who have/had fertility issues if I had the money back for the cycles that DIDN'T work- well.... I could pay off half of my house, lol.

Any ideas my dear readers on how to magically come up with $6k?

Christy

Breathing Tube Out

2010-12-29T18:16:00.000-08:00

Cami's breathing tube has been removed!! We are very excited about this update! However, she has since had to have a nasal cannula put on because she was having retractions- but the breathing tube is still out for now. Thank you for all of your prayers, I truly believe that your prayers are what saved our baby girl's life. Camryn was in the top 3 of the most critical in the PICU and now is not- she is still sick- but no longer in the top 3. Thank you again for all of your prayers and financial help. We appreciate it all very much.

Updates

2010-12-27T20:00:00.000-08:00

Cami came through surgery okay. Sorry it took so long to update, but I can't get on my blog on my phone. She has 2 incisions on her little head. One is where they removed her drain and the other where they put in her new shunt. She has a new incision on her little belly where they have to bring down the tubing for the fluid to be able to drain into the abdominal area. She did okay in surgery and woke up a bit later. She is still sick, but is no longer in the top 3 of the most critical kids in the icu any longer. She is still up there, but not in the top 3 *thank God*. She is still on the ventilator and will be for a while. Now for the crappy update.... I do not think that Cami can see anymore. I think she is either blind or has very limited sight. She will not follow or focus on anything. I don't care if it is right in her face or a few feet away- we have tried from an inch all the way to 3-4 feet away. When her room light is off and we turn it on- she doesn't squint or respond at all. Also.... my camera has a double flash- it has always been very hard to get a picture of my kids with their eyes open when I have to use my flash- tonight I used my flash about 20 times and she never closed her eyes. I brought this up to her nurse who watched me do all of the above and even put a bright colored stuffed animal in her face and moved it around and she never followed it either. So, the nurse is going to tell the Doctors about it. I know that Cami could see before because she would follow us with her eyes and follow toys. She would try to focus sometimes and cross her eyes doing it. Also, she would close her eyes when the flash went off in her face. She doesn't do any of that anymore. She saw an eye specialist after she left the NICU and they said her eyes were perfect. Well, they no longer are. So, I don't know if it is the brain bleeds or seizures or what- but my daughter does not see any longer. I also don't know if she hears anymore either because the nurse was snapping her fingers in her ear and she didn't move or show any sign of hearing it. Her hearing was fine before as well. I know that they can check her hearing- but I think with her vision- it is a "wait and see" thing.

I want to say thank you to all of you who have donated to our stay at the Ronald McDonald house and to us. Our Ronald McDonald house bill is now paid in full!!!! Of course we continue to be charged $10 a day- but at least we are current. I want to say THANK YOU from the bottom of my heart to each and every one of you who have donated to help us. Financially we are ruined right now and you have helped us tremendously. Not that it is Camryn's fault, but once she came home from the hospital- with all of her appointments between the driving and the co-pays & medications we went thru thousands of dollars (we live way out in the middle of nowhere and have to drive over an hour each way to her appointments) We are behind on all of our bills- we are possibly going to lose our home because we can't catch the payments up and they won't work with us. Our church can make one payment but the bank wants more than that. So, on top of all of this stress with our baby we are now possibly going to lose our home that I have lived in for almost 11 years. So, your help has really helped us right now. We at least have the Ronald McDonald house paid- we have food to eat and with the money that comes directly to us- we can pay off the oral surgeon that did Cody's dental work. I am very emotional right now and each time that I get an email telling me that someone called and made a donation for us- I cry. When I get a check in the mail here- I cry. I cry a lot these days. I truly love all of you. I thank you all for your prayers and your donations to help our family. We have never been in such a financial mess in our lives. Thankfully our vehicles are paid off.

So, again- thank all of you who have helped our family. You are all Angels and we appreciate it more than you will ever know.

My email address is christyfaglie@yahoo.com if you would like to email me.

I hope you enjoy these pictures taken today

Camryn's Surgery

2010-12-27T08:03:00.000-08:00

Cami is going into surgery at 11am cst. She is having her shunt internalized yet again due to the drains getting infected over and over. Not sure if she is really stable enough for this- so please pray that she does well. Thanks

Beautiful Eyes

2010-12-23T13:11:00.000-08:00

I have been able to see Sissy's eyes a couple of times now. They are slowly weaning her off of her sedation medications with methadone & ativan (sp?) Dr is wanting her to wake up so that they can get her off of the ventilator. She was moved off of the high powered ventilator that collasped her lung because they were scared that it would collaspe her remaining lung and that would be deadly. So, she is on the weaker ventilator and it is having a hard time keeping her O2 sats up. So, they are trying to wake her up so they can remove the ventilator all together. She had another cat scan this morning, but I haven't heard the results yet. I was told I had to wait until the Doctors all rounded- they have since rounded but still no answer for me. The tube that was coming out of her chest wall to release air from there has been removed. The catheter has been removed (it left her with a nasty bladder infection) Her neuro surgeon is wanting to internalize her shunt this weekend if at all possible because her newest drain is already starting to show signs of getting infected. So, she may be in surgery again this weekend (Merry Christmas to you Camryn) She still has a brain infection, still has a lung infection, now has a bladder infection, seizure medication is keeping the seizures at bay for the time being, drain in head starting to show signs of infection, still has iv's in both hands, both feet & one leg. She is still having a hard time keeping her own temperature stable without the heated air blanket. (don't know what that is about) I am waiting to hear back on the cat scan to see if any of the brain bleeds have stopped- I know the bleeds are going to leave damage behind like the neurologist & neuro surgeon told us- but I hope that they have begun to stop or at least slow down. She hasn't had to have a blood transfusion in about a week now- so I am hoping that the bleeds are showing signs of slowing down and/or stopping. That would be great. I will upload new pictures of her as soon as I get my camera back. I left it in my Aunt Debbie's car a couple of days ago, but I should have it back tomorrow.

I wanted to say a huge THANK YOU to all of you who have prayed for our family and to those who have posted our story on your blogs. I didn't know that was done until I had a couple of people email me and let me know and I truly appreciate it. Though I now have children I have always followed my fellow "infertile" friends on line. After years and years of wanting to be a mom and it not happening, even after it finally does you are still that person. Someone once told me that once I had children I would forget my struggles... That simply is not true, maybe for some but not for me- that is why I still rally behind my online friends.

Thanks for everything,
Christy, Kevin, Cody (aka "Boogie") & Camryn (aka "Cami" & "Sissy")

In Need Of Help

2010-12-20T19:42:00.000-08:00

Though I hate to do this, I have to. I need to ask to help. Unfortunately, we have to pay $10 a day to stay at the Ronald McDonald house, on top of that we have all of our regular bills at the house. On top of that Cody broke 2 of his teeth and he does not have dental insurance so we have to pay more than $500 out of pocket to fix his bottom tooth. His top tooth is chipped, but it isn't a big deal the bottom tooth is cracked down into the gum and is a big deal- it is painful for him. Kevin took off of work for 2 weeks when Cami went into the hospital and it was not paid. So, we are up a creek. I do not have a paypal account anymore. If you are able to help (even $10 will help tremendously) you can mail a check/money order to the Ronald Mcdonald house at

Ronald McDonald House
1315 Barbara Jordan Blvd
Austin, Tx 78723

If mailing a donation- please put my name Christy Faglie and Room # 28 on it so that it is credited to us.

You can donate online at http://www.rmhc-austin.org/ You have to put in my name and room number. Also, please be sure to let me know that you donated so that I can be sure that it is credited. A friend donated last time and it was not credited until I told them and they tracked it down. (my email address is christyfaglie@yahoo.com)

You CAN pay over the phone via credit/debit card (I verified this today with the house manager) by calling 512-472-9844

If you are able to donate directly to them, that will help me tremendously- that way we won't owe them so much. We still owe them $80.00 from when we were here when Cami was born and as of now we owe them another $120.00. So, we are up to $200.00 now. I don't work- I stay at home with the kids and since Kevin was off for 2 weeks unpaid and any money I do have has to go to get Cody's tooth fixed- we are broke. We are not going to have a very good Christmas this year. Cody & Cami will be taken care of though- family has made sure of that. Kevin and I do not need anything- we just worry about having our bill here paid.

You can mail something directly to us here as well. Just send it to the address above but put my name "Christy Faglie Room # 28" on the envelope as well and it will get to me. If you would rather mail directly to us rather than give directly to the Ronald Mcdonald house you can do that as well. Just mail to the above, thanks.

I am sorry to ask for anything, I know this is a horrible time of year to ask for anything- I know my readers have their own problems to deal with and their own families to buy for. However, if you do have anything extra and can help- I would appreciate it.

They moved Sissy off of the strong ventilator that collapsed her lung today- they were worried that it may collapse her other one and that would be devastating. So, Sissy is now on the regular ventilator. That is both good and bad- good because it won't collapse her remaining good lung and they can also give her breathing treatments with this one and bad because she is de-satting with the weaker ventilator. I feel like I am on a roller coaster. However, it isn't about me- it is about that little girl who has been through so much in her 4 months & 2 days on this earth. Camryn is a little fighter, she is a strong little girl.

Thanks for reading & God Bless you all

Christy

Emergency Surgery

2010-12-19T22:03:00.000-08:00

Cami had to have emergency surgery today to remove a drain from her head and then had to have it replaced. She is not stable enough to go to an operating room, so they operated on her in her icu room. Her drain that is acting as her shunt became infected, so her neuro surgeon removed it and then replaced it with another drain. They lost her once during surgery, but were able to bring her back. I am stressed beyond belief about a million things right now.... here is a picture of my baby girl today.

Dear Santa,

2010-12-18T17:09:00.001-08:00

Today Cami is 4 months old. I have to admit that the last four months have been filled with a lot of ups and downs. All I want this year Santa is for my little girl to be healed and well enough to go home to be with all those who love her. She has a big brother who was just starting to get used to having her around. We tell him where she is Santa, but we know he doesn't understand. Kevin and I know that her getting well isn't something that your elves can make. That of course, would be too easy. However we do know that you accept every one's wishes and well Santa, that is our wish. We wish that our little girl who turned 4 months old today will get better.

Sincerely,
Mommy, Daddy and Big Brother Cody

Feelings

2010-12-16T10:29:00.000-08:00

Though I am hurting horribly I know that my daughter is hurting more. My hurt is nothing compared to my beautiful little girl's hurt. I know that she must be so confused. I know that she is sedated, I know the Doctor tells me that the older kids that are sedated never remember anything that happened to them. However, I can't help but wonder what she IS feeling and what she MUST know. I feel selfish because I BEGGED God for years to let me be a mom. That is all I have ever wanted- to be a mom. I was blessed two times. There were days that I cried all day long because I wanted nothing more than to be a mom. It didn't matter if the child came from my body or not, I just wanted to be someones mom. I wanted someone to call me "mama". I now have two beautiful blessings, Cody will be 18 months on the 26th of this month and Cami will be 4 months on the 18th. I feel bad that Cami is going through so much right now. I know that God wanted her on this earth or he would not have given her to me. Cody and Cami are my heart- they are two halves that make my heart whole. I am angry right now because my baby is suffering and no one seems to know why. When she went into the hospital she didn't have any brain bleeds- her subderal's were bleeding, but not the brain itself. She didn't have a hole in her lung, she didn't have RSV, she didn't have a lung infection, didn't have a brain infection, wasn't having seizures. All of this manifested while there.... I am just rambling- sorry... just need to try and vent. I thank God every day for my children- they are my miracles. I beg God daily to heal Cami, She is half of my heart.

My Beautiful Baby Girl

2010-12-15T12:44:00.000-08:00

So much has happened that it is hard to keep up with. It seems like forever ago that I had a happy, healthy little fat cheeked baby girl that I was loving on all the time. Now I a left with a little girl whom I love dearly, but who is fighting for her life. I am told that since she is sedated that she doesn't know what is going on around her. However, when I read to her or talk to her she tries coming out of her sedation- her eyes start moving and her heart rate increases- she knows that I am there. I am angry, I am sad, I am depressed, I am.. I don't know what I am anymore. Half of my heart lays in a bed in room 238. That half of my heart is hurting, that half of my heart is lost, that half of my heart doesn't understand what is happening to her. The other half of my heart is not hurting, the other half of my heart is not lost, the other half of my heart doesn't understand where the other half is. I am blessed to have half of my heart with me. I am blessed that half of my heart is completely healthy, happy & well. He keeps me going- he gives me hope. Cami is still the same- her most recent RSV test came back negative- however, she still cannot breathe on her own. The breathing machine was too strong and put a hole in one of her lungs. Due to that happening, she had to have a procedure done where a tube now drains air from her chest cavity so that her lungs can fully inflate. My poor little Angel has so many tubes & wires coming from her that I do not even know where to begin. She cannot keep her temperature up to a normal range- her temp keeps dropping to 95 or 96 something. So, she has a heating air blanket on her at all times now to help with her temp. She has the EEG machine connected to her at all times as well to monitor her seizures. She was seizing pretty regularly, but since they put her on a new medication she has not had another seizure yet- however, the EEG machine remains to be sure that she is not having them any more. She has 2 tubes in one of her nostrils- one is her feeding tube and the other is so that they can drain fluid from her stomach to see how much she is actually digesting- she is doing very well on that end. She has the tube that is draining air from her chest wall, she has a catheter in her hoo hoo, a thermometer in her rear end, a central line in her thigh, an iv in her hand, an iv in her foot, 3 drains in her head, the breathing tube in her mouth and down her throat and wires all over the place. Due to the medications she is on, she is having to have suppositories to use the rest room and it is just awful. I would trade places in with her in a heart beat. We had the meeting with the neurologist who showed us her MRI'S. I was under the impression that she had 4 bleeds in her brain- well, that is not correct. She has 4 large bleeds.. however, she has over 20 small bleeds as well. Please continue to pray for my baby girl. She needs all the prayers that she can get.

Pictures & Medications

2010-12-10T01:41:00.000-08:00

The first picture is of Cody giving his baby sister a kiss, then there are 2 pictures of Cami that were taken on 11/30. The other two were taken tonight

Here is a list of the medications that Cami is on right now
Rocephin- Antibiotic
Pepcid- Stomach Acid Help
Lasix- Diuretic
Keppra- Seizures
Normal Saline- Keep Hydrated
Puraluke- Moisturize Eyes
Vitamin K- Helps Blood To Clot
Albuterol- Nebulizer
3% Sodium Chloride- Nebulizer
Vancomycin- Antibiotic
Tylenol- Fever
Neosporin- This is for her Drain Sites
Versed- Sedation
Fentanyl- Sedation & Pain

More about Cami

2010-12-09T20:12:00.000-08:00

Updates... she had another MRI today and there are not more brain bleeds, just the original 4. Thank you JESUS!! She is still in a medicinal coma basically so that she doesn't feel anything. She is still on the breathing machine, still has RSV, still has a brain and lung infection and still has 4 brain bleeds. She was so swollen though that her skin looked like it was starting to stretch- so they put her on lasiks (sp?) and some of the swelling has come down. They are giving it to her every 8 hours as long as she can tolerate it. She now has a rash on her chest and belly that I pointed out to the nurse- the rounding Dr just said that it can be a contact rash or possibly a rash from one of the many medications that she is on. They will just watch it for now. Her EEG came back and the neurologist said that it just shows a brain malformation that could cause seizures. Well, we know she has a brain malformation- so that isn't news to us. She did have a seizure right in front of the neurologist today- so they are upping her seizure medication to 3 times a day now. Her color is better though- she is pink now instead of gray, but that is because of the breathing machine- if she was breathing on her own, we may not have her right now because she was gray & blue before they breathing machine came into play. I am going to try to get a list of medications that she is on, but I don't know if they will spell them all out for me because some have really long names. I know her seizure medication is kepra (sp?) and she is now getting that 3 times a day now. Her pain medication is fentanyl (sp?) and she is on a continuous drip of that. Anyway, so basically nothing has changed except that some of her swelling has come down. I know she is in God's hands. I pray that he lets her stay on this earth long after I am gone- but that is his decision. I am trying to stay calm, at first I was not calm at all and just cried- but now I realize that I have to be strong for both Camryn and Cody. So, that is all for now. Will try to update more tomorrow. Thank you for all of your prayers.

Not A Good Update...

2010-12-08T20:27:00.000-08:00

Sorry I haven't posted in so long. I do not have internet access at home any longer so I can only update when I have access to internet and the time to do it. Cami went back into the hospital on Monday. She had a routine MRI and then I took both Cody and Cami to their Pediatrician due to them both having cold symptoms. Their Dr was not available, so one of her partners looked at them and said that they both had "pink" colored ears and were congested, etc... so they were prescribed amoxicillian. Anyway, as I am buckling Cody in his car seat my phone rings and it is Cami's neuro surgeon's office telling me to get to the children's hospital ER immediately. I asked why and I was told that Cami had bleeding in her brain that needed to be taken care of. So, I went from the kids Doctor in South Austin to the Children's Er in Central Austin. Well.... what would have usually taken about 20 minutes tops, took an hour due to rush hour traffic. I got to the ER, Cami was admitted and went into surgery. Her shunt was removed and 3 drains were put in to drain the blood in her ventricular veins on the left and right side. The 3rd drain was to do what the shunt was there to do- remove fluid. Her Neuro surgeon said that it was caused by the shunt working "to well" So, she came out of surgery and seemed to be okay except for a lot of pain. However, last night she went down hill quickly. She started having a hard time breathing and was rushed to the ICU. She is still there. They have incubated her so that she can breathe. She is basically being put to sleep with medication so that she doesn't know what is going on. She has a line sewed into her leg so that they can get blood and give here stuff as well. She has needles in her hand as well. She is very swollen and looks horrible. She doesn't even look like herself. Today I was told that the newest MRI shows 4 more bleeds in her brain itself- not in the ventricular area- but the brain itself. No one knows why this has happened or what is going on. They have consulted with a hematologist and sent many blood cultures to him to see if she has a bleeding disorder that may be causing this. The bleeds were not there Monday night when the drains were surgically installed. She also have been diagnosed with RSV as well and has an infection in both her brain and her lungs. The infection has not been named yet- but she is on 2 antibiotics to help cure it. Anyway, any prayers would be appreciated. Three members of our church came tonight and Brothers Brad and Michael Pickett gave Cami a blessing and also gave me one. Sister Annette Pickett was there for me in my time of need and I love her. She is a wonderful friend, confidant and a terrific mother to her 3 children. Thank you all for coming tonight.

Sorry So Long w/o post

2010-10-31T14:07:00.001-07:00

Kids are sick, both congested, coughing, sneezing, fever, runny noses... the works. They will not enjoy Halloween and mom is not enjoying no sleep. Will update more later

Cami is HOME!!!

2010-10-22T16:26:00.000-07:00

Our beautiful baby girl is home now! She was discharged at 3:15pm today. I am so excited, I can actually be her mom now. I felt like a visitor when I could only visit her. I hope you enjoy her "going home" pictures. My aunt Debbie came to help us on our first day. She is pictured here holding Cami today. She is soon to be a Grandmother for the first time any day now to a little girl named Cadence. Also, Cami now weighs 8lb 6oz. She is getting so big!

8lb 4oz

2010-10-21T08:59:00.000-07:00

That is what Cami weighed last night! She is getting so darn big on me. Her due date was yesterday. I guess she would have weighed more than Cody at birth since he weighed 5lb 15oz. The plan is still to room in tonight (unless the Dr calls and tells me otherwise) so that baby girl can be released tomorrow!! I have to admit I am a little nervous. I mean, she DOES pause breathing a bit. I do live in the country and when I had my stroke it took ems 38 minutes to get there. (I am not joking either) I will be calling them to tell them all about Camryn so that if I dial them they will not take 38 damn minutes to get there. A friend told me to call the electric company as well and tell them I have a medical need for electricity so that if the power goes out I am one of the first to be reconnected. Her machine does have a battery and if fully charged will last about 8 hours. Anyway, I am happy that she may finally be coming home, yet I admit I am nervous. I am not nervous about having 2 kiddo's at home. I am nervous about Cami's breathing issues. When I do get her out- I will definitely be posting pictures of Cody & Cami when they meet. I want to see what Cody's expression is, lol. Time flies by so quick.... It doesn't seem that long ago that Cody was born. Here it is almost 16 months later. Camryn was just born and here she is 2 months 2 days old!! There is a song by D*arius R*ucker that is perfect. It is called "It won't be like this for long" and it is completely true. Soon Cody won't want mommy to hold him when he is hurt or tired. He won't fall asleep with mommy holding him. My kids are my world, but I know as they grow their need for me will lessen. When I am overwhelmed, I like that thought, but when I just watch them- I never want them to get older.

Today is Cami's due date and Possibly going home??

2010-10-20T01:23:00.000-07:00

I had my monitor training today with a basic cpr course with it. Got it all down and I think I will be okay there. Then got the great news.... Neonatologist says that if Cami does okay on her breathing Tuesday & Wednesday night that I can room in on Thursday night and if her breathing is also fine then.... She will be discharged on FRIDAY!! YES>>> that is correct... FRIDAY as in 2 days after my due date of 10/20/10. As in October 22nd! So, cross your fingers that this is it for us :O) I can't believe my baby girl may actually be coming home and that Cody will soon meet his baby sister.

Cami is 2 Months Today!!

2010-10-18T14:44:00.000-07:00

It is hard to believe that she has been here for 2 months already! She wasn't due until October 20th, lol. She is just as gorgeous as ever. We had our meeting last Tuesday with the Doctor & case worker. My mom and sister went with me. We learned that Cami is missing 30% of her brain. This is called holoprosencephaly. She also has Apnea as well. So, Miss Cami has a few diagnosis's along with hydrocephalus I guess. I just know she is mine and she is alive. Cami looks so much like my sister! She still has Kevin's lips & chin, but the rest is my sister. It is crazy how much she resembles my sister as a baby! Anyway, Cami has gained another 2 ounces. So she is now 7lb 15oz!!!!!!!! Can you believe my baby girl is already that big???!! About the diagnosis's I DON'T care about them- they are just a stupid diagnosis... a label. She is Camryn Jean aka Cami to me, I see my child and not the diagnosis's. Thank all of you for your continued support- I need it. (excuse my ugly face. I do not get much sleep and yes that is a fat roll you see in the picture with me)

Guess who weighs??

2010-10-11T01:28:00.000-07:00

7lb 1oz!!!! I cannot believe my angel is already over the 7lb mark. She is doing wonderful- she hasn't had any episodes of not breathing since the 7th. So, keep the prayers coming- they are definitely working! We went to our niece's son's birthday party yesterday and it was great. Enjoy the pictures. (Kevin was born when his dad was 50- so he has nieces & nephews older than he is)

Feeling Better

2010-10-10T00:06:00.000-07:00

Thank you all for your comments- they mean a lot to me. It feels good to know that I have people praying and standing behind me in this difficult time. Camryn is just fine- she did not have any a's & b's tonight. (that is what they call it when she doesn't breathe) She is beautiful and strong. She looks so much like my sister- it is funny. She has Kevin's lips, chin & double chin. However, from nose up she is my sister. Her chubby cheeks, button nose, the way her eyes are- her spiky brown hair. My sister has beautiful green eyes- I hope Cami gets them since she gets so much from her Aunt Jessie. However, me and Kevin's eyes are brown as is Cody's so I don't know if she will have another color or not. Here are some pictures taken tonight. Cami was weighed tonight before I bathed her and she is now 6lb 14oz!!!

I will not give up

2010-10-09T12:34:00.000-07:00

Thank you all for your comments. I will not give up on my daughter, she (like Cody) is my life. We know she has brain damage, we know part of her brain never formed. However, we also know that she can function in life and that our Heavenly Father gave her life and gave her to me. I think that their thoughts are that it would be easier to let her go now vs later. I don't think I will have to ever say goodbye to my daughter- she is a fighter. I will take her home with a monitor. We are going to take infant cpr classes and pray for the best. Here are beautiful pictures of my daughter. She is up to 6lb 12oz now.

Not A Good Update

2010-10-08T09:26:00.000-07:00

The top pictures are the most recent pictures of my miracle baby girl

Cody at his Grandma's house (Kevin's mom)

Cami has had trouble with forgetting to breathe for a long time now. The Dr's thought it was due to prematurity, however it is now getting worse. Now they think it is neurological. Long story short... they think that one day I may wake up and my daughter may not be with me any longer. I was asked if I would consider taking her home without a monitor and with a DNR. What is a DNR? It is a "Do not resuscitate" I will NOT sign that order and I will NOT take her home without the monitor. We have a meeting with all the key players Tuesday afternoon. That would be Cami's neonatologist, neurologist, social worker, case worker, chaplain and Lord only knows who else. I will NOT give up on my daughter. I have cried my eyes out since I got that DNR call. I have asked my mom, my step dad & my sister to come. I would ask my sister in law but she has her hands full with her 3 kids. Cody will be at the meeting and if he acts up too much then my step dad will take him out in the hall. I cannot handle losing another child. Please keep Cami in your prayers and pray that her breathing improves.

If you have any advice for me- my eyes & ears are wide open

What to say?

2010-10-05T15:14:00.001-07:00

Since we have been staying at the Ronald Mcdonald house I have learned so many things. I have learned that there are a MILLION things that can happen to a child from conception to birth. Things don't develop, things don't form correctly, things get twisted, things grow together and more. We have had 2 couples now lose a child. One was poor Walker who had gastroschisis, he had 2 surgeries to remove the dead parts of his intestines. He was left a small part of his intestines, but then they started to die as well. The parents were told that if they removed the part that was dying that he would not survive- there would not be enough intestine left for life. So, Walker joined our Heavenly Father. Then we became friends with another couple who had twin boys quite a bit early. The boys J & Z weighed in at a bit over 2lbs each at birth and at first seemed to be doing okay. Well, then Z got to where he couldn't really eat. So, come to find out he also had intestinal issues. He had holes in his intestines. So, he went into surgery and the Surgeon gave the parents about a 10% chance of making it. Unfortunately, baby Z has passed away. They still have baby J with them, but of course are mourning baby Z. I have lost children before. I know what NOT to say to them, but then again not really because my children were stillborn vs giving birth to a live child that you are able to love on, kiss, hold, talk to and that sweet little person looks at you, stretches, cries, grunts and makes noises that you can hear. So, what can I say now that will not hurt them. Walker's parents are doing okay. He was mom's first child and dad's second. I have spoken to Walker's mom on several occasians and they have offered to care for Cody so that I may go and see Cami during the day. I have yet to take her up on the offer, but I may one day. With J&Z's parents what should I say or do? They have one son who is alive and things are looking good with him, but then there is poor baby Z. So, any suggestions would be helpful. There is another couple that gave birth to a baby girl named Ella with trisomy 18. Any advice on what to say to them???? Any and all advice would be helpful. Thanks in advance!

Now & Then

2010-10-04T03:14:00.000-07:00

It is amazing just how far my sweet little girl has come. The older pictures are the day of her surgery. I took them right before she was taken down. She was 12 days old then. She is now 6 wks 4 days. So many people take for granted the health care that we have available to us here in the United States. I saw a child with hydrocephalus in Ukraine that never had a shunt placed. The poor baby's head was enormous and her little body so tiny. She just laid in her crib looking at the ceiling because she could not move her head even from side to side. She would look at you and smile though. I wonder about that little girl even today. I think about how many children that were born with hydrocephalus are just lying there, their caretakers just waiting for them to die. I thank GOD that Camryn was born to me and that we were able to get her shunt placed. Please leave comments if you have a story to tell or if you want to let me know anything. You can also email me directly at christyfaglie@yahoo.com Thanks for taking the time to read our blog. Also, Cami weighed in at 6lb 6oz and is now 18.5 inches long. *yay*

6lb 2oz

2010-10-03T09:12:00.002-07:00

Our beautiful baby girl now weighs a whopping 6lb 2oz. I can hardly believe that my tiny little angel is that big. She is now bigger than Cody was at birth. He was 5lb 15oz and when we left the hospital with him he was 5lb 10oz. Of course her little head is heavier than his, but she is now bigger than her big brother was. I think Cody will be a good big brother once he gets used to having a baby sister. I know it will be hard for him in the beginning because he is used to being mommy's big boy. My mom took Cody to get his first "professional" hair cut. She took him to the beauty parlor that she goes to and he loved it. He sat still and let the lady cut his hair. I tried to get good pictures of his haircut, but he is hard to catch still, so this morning right after he woke up I had Kevin hold him so that I could take a front and back view shot. I will try to get a better one later, but wanted you all to see how handsome my little man looks. I hope you enjoy the pictures- they are the newest that I have. I want to thank all of you for continuing to read my blog. I don't know how many of you I still have- so if you will leave a comment I would appreciate it. THANKS!!

Gifts

2010-09-29T12:55:00.000-07:00

I have been blessed many times over. I have 2 beautiful children which are truly a blessing from God. I am also blessed to have great friends and am blessed that my mom has such great friends. With both Cody and Camryn we have been given so much and it is very much appreciated. My mom's friends have given us so much for our children. Cami has so many beautiful outfits and a gorgeous basket that has "must haves" in it, she also has a handmade care bear blanket like Cody's except hers is pink. Cody wasn't forgotten either- he has a great new set of pj's. The pictures of just some of what we have been given since Cami's birth. Thank you to everyone who has given to my children- it means so much to know that they are cared about by others. Someone asked what we needed for Camryn- the only thing that is a true "need" will be diapers. She will need the preemie size like Cody did for the longest time due to having such skinny legs and no butt, lol. Again, Thank you to everyone who has said a prayer for our family or given to our children. Everything is much appreciated. A huge thanks to my friend Kristy and her husband Rick for paying an entire MONTH of our stay at the Ronald McDonald house. Kevin and I appreciate everything so much. It is hard to put into words how we feel. We feel blessed to have so many people praying for our family. Someone recently told me that she felt bad that all she could do was say a prayer for us. I explained to her that we feel blessed just to have someone add us to their prayers. Again, thanks for everything- we appreciate all.

Sleep Study Update

2010-09-28T16:15:00.000-07:00

Cami failed her sleep study. She quit breathing multiple times so she failed it. That is okay though- I want her to really be ready before coming home. Her Doctor said that her breathing is still immature at this point. Enjoy pictures of Cami from today :O) I cut Cody's hair a couple of weeks ago- I wish I would not have because I miss his little curls.

Good News

2010-09-27T13:18:00.000-07:00

My little girl may be coming home within a week!! She has a sleep study scheduled for tomorrow and if she passes that she will be coming home in the next few days. Sometimes when she is sleeping or eating she will forget to breathe. Apparently she has not had this happen since the 22nd and if she passes her sleep study, she will be cleared to go home. Four days ago they removed her feeding tube and she is now taking all nutrition by bottle. This is good because it shows she knows how to feed via her bottle but she has lost a little weight. So, according to her neonatologist if she doesn't lose any more weight and passes her sleep study- she will be able to come home. So, please keep her in your prayers. Cody is now 15 months old and will have to learn to share his time with mommy. The picture of Cody is of him walking in the hallway leading to the NICU... The pictures on the walls are of children who are nicu graduates. Anyway, will try to update more later

Updated Pictures Of Cami

2010-09-21T07:24:00.000-07:00

Here are some updated pictures of our big girl. As of last night she weighs 5lb 10oz. She is close to being 6 pounds. *wow* Of course I have to keep in mind that a lot of her weight is in her head, so her little body is still tiny. However, she is doing well. I got to bathe and feed her last night- it was wonderful. The breast pump and me are not friends though. I HATE it. Well enjoy pictures of my beautiful baby girl :O) My handsome little man met Ronald Mcdonald as well, lol

3 Bottles A Day!!

2010-09-20T17:54:00.000-07:00

Cami is up to 3 bottles a day and has moved from her isolette to a regular hospital bassinet. They are doing a trial run to see if she can maintain her temperature. So, here is to hoping that she can as that is one step closer to coming home. Her head did go up a half centimeter, but then it went back down. So, the neuro surgeon is not worried at this point. Will upload more pictures tomorrow.

More Updates

2010-09-19T08:35:00.000-07:00

Cami weighed in at 5lb 7oz last night. She is getting so big! When Cody was born he weighed 5lb 15oz and when he went home he weighed 5lb 10oz. So, she is almost at the weight that Cody was when we took him home. However, the difference is that Cody didn't have all the extra weight in his head that baby girl has. From the front it is hard to see the hydrocephalus, when she was first born her head was really round- when you felt her head all you could feel was fluid. Then she had her shunt placed and then we could feel her fontanel plate and her soft spot. However, she still had a soft spot on the back of her head the size of my palm. The back soft spot is closing (thank God) it is now about the size of a 50 cent piece. From the front it is kind of hard to notice the hydrocephalus except for her high forehead. However, you can see it from the side- that is why I posted the bath picture that shows her head. I asked the neuro surgeon about the size of her head. He says that the hope is that she will grow into her head. So, that is that. Kevin is a lot more over protective of her than I am. He has already had it out with my dad. I can ignore my dad as he is an alcoholic- but Kevin cannot. My dad told us that was don't need any more kids because "look what we did to Cami" "you don't need to put another child through that" and a lot of other stuff. He still hasn't been to see Cami either- he says it is because no one will take him. Part of me wants to go and get him- but another part does not because if he says anything mean, I will disown him. So, I don't know what to do. We love our daughter regardless of anything and I don't want to subject her to ignorance. So, any ideas?

Cami is 1 month Today!!!

2010-09-18T10:10:00.000-07:00

Happy 1 Month to my beautiful baby girl!! I have been blessed to be able to touch her for 1 month today. I am in love with my baby girl just as I am with Cody. She is so strong & beautiful. I got to bathe her again last night and then got to feed her her 2nd bottle!! YES, she is now taking 2 bottles a day. Her Dr upped her feedings to 2 bottles a day. She didn't quite finish all of her 2nd bottle, but the nurse said that was probably because we had just bathed her and the bath wears them out as well. So, I am just happy that I can feed her twice a day now. Also, she can now wear clothes!! Cody is sick though, he has an ear infection and uri. So, please pray that he gets better soon.

In order for her to go home she has to be able to take all of her feedings by bottle and maintain her temperature.

We are still quite a ways away from bringing her home, but we will.

However, if it gets to where the Dr thinks she can't handle all of her feedings by bottle, then she will have to go home on a g tube. I am praying that my baby girl is able to take all of the feedings by bottle.

Good/Bad Post

2010-09-17T18:28:00.000-07:00

When I went and saw my beautiful baby girl tonight she drank her whole bottle in the allotted time of 30 minutes and was an absolutely beautiful sight! I talked with her neonatologist who upped her bottle feedings to 2 times a day *yay* I asked him about her abilities... he said that she functions very well for a baby- however, she may have to go home on a feeding or g tube if she doesn't do very well as we up her bottle feeds. He also told me that until all the fluid leaves her head we will not know how much of her brain didn't form. The neuro radiologist who saw her first mri's said that part of her brain did not form. We have known this for quite a while.. but to have it said again is something else. We do not care what her ability(ies) or disability(ies) is/are she is our daughter and we love her. If any of our family or any of our friends say anything negative about my daughter- I will cut them from my life FOR GOOD. I will not even attend their funeral. If I hear someone use the words retard, retarded, water head, big head or any other derogatory remark they will be cut. They will cease to exist in my world. I always wanted to have a child with down syndrome. I know a LOT about down syndrome- I have had to learn about hydrocephalus. So, now I am getting to know this thing that caused my daughter's brain not to form all the way. I HATE it!!!! I hate that her brain did not form!!! I LOVE my daughter but I am angry about her brain not forming because of the stupid fluid.

5lb 5oz & Honesty

2010-09-16T15:06:00.000-07:00

Cami is up to 5lb 50z as of last night. She is getting so big!! I won't be able to see her today because I am not feeling well and don't want to take a chance that I could get her sick. She is taking her bottle well- she gets better every day. She is still just feeding one bottle a day and the rest are through her tube. The swelling in her head has gone down quite a bit as well. She is so alert and active and GORGEOUS!! It is funny how much she looks like her daddy though. Cody looked just like me at birth and she looks just like her daddy.

I want to say thank you to everyone who has commented and that have been praying for us. The prayers are working!!

Carol- yes I know who you are and would love to order more - the chili was great!!! How can I order more?

Well, thank you all and please continue to keep Camryn in your prayers!!

When I found out I was pregnant with Camryn I was in shock. Cody was only 6 months old. I was very happy but I just "knew" that something would be "wrong" I can't explain it. It took us 7 years, lots of money and tons of heart break before Cody came along. Cody was our miracle our gift from God. We never thought that we would have that gift again. There were many nights that I cried myself to sleep thinking that I would never be a mom. That was all I wanted in the world. Then my beautiful, perfect little boy entered my world. I treasured every movement I felt when he moved, I loved to hear his heart beat and the day he was born my life was perfect. I did not love my child. I was IN love with my child and still am today. So, when I found out I was pregnant again I loved my child with all I was, just as I did with Cody. However, I just had a feeling that this child would be different than Cody in some way. When I found out at my 16 week ultrasound that I was having a girl- I was thrilled- I had the "perfect" family... a boy and girl. Then I found out that my perfect baby had hydrocephalus. I worried when I found out that there is a chance of death with this diagnosis. I cried and I worried about that chance. I cried quite a bit. I didn't cry because she had the hydrocephalus- I cried because of the small chance of death. Every day that I had her inside my body was a gift- every movement a miracle. I knew she would be okay. Then I went into labor at 29wks 5 days. They were able to stop it that time. However, when I went into labor at 31 wks- I was 6 cm dilated and contractions were a minute apart- no way to stop them. I had an emergency c-section and was cut from my pubic bone to my belly button. I saw her for a brief second and she was whisked away to the nicu. All I cared about was her health- I wanted to be sure she was healthy. Thank God she is- she is a fighter and I feel blessed to be her mom. Will update more later- Cody is tired of me not playing with him.

My First...

2010-09-15T10:17:00.000-07:00

Yesterday evening was the first time that I was able to give baby girl a bath!! I was so very happy because I actually got to feel like her mom and not just a visitor. The bottle feeding every day has also been helping with that, but a bath and then a bottle following up the bath made me feel like a million bucks :O) Enjoy the pictures that the nurse took.....

One Day At A Time

Cami hospitalized again

Hello

Easter & More

Sweet Cami Updates

Short Post

Sorry So Long Without A Post

To Clarify

Are We Real???

Pictures From Today

Back At RMH

Camryn's Auction

Camryn's Auction & Surgery

Hello All

Heading Out

Packing & Heading Home

Pictures & Goodbye

Moving.....

Pictures from Tonight

Money, Money

Just Going To Stand There.....

Cody & Cami at 6 Months

What I Was Going To Say....

Forgive Yesterday's Post

Camryn's Surgery

Pictures & Updates

Cami Is 6 Months Old Today

Still No Internet Access

Camryn Surgery Update

Pictures & Surgery Update

Surgery

New Blog Design

Cami's Heart

Grieving

Time Flies

Difference

House-check Cami-check

House-check Cami-check

Cami

What is still needed

Pictures & Updates

Updates....

My Amazing Baby Girl

Surgery Update

Tonight

Camryn Jean

Pictures

Cody & Cami

My Amazing Monkey Cody

Cami

Pictures Before Now

Happy 5th Month Cami

I am...

Pictures from Tonight

My Little Mr & Miss

Blog Button

Cami Now

Surgery

Not Even Sure How To Begin...

Oh My Heart....

More

Thank You

Updates

Happy New Year

Feelings

Chip In *with update*

What to do?

Breathing Tube Out

Updates

Camryn's Surgery

Beautiful Eyes

In Need Of Help

Emergency Surgery

Dear Santa,

Feelings

My Beautiful Baby Girl

Pictures & Medications

More about Cami

Not A Good Update...

Sorry So Long w/o post

Chip In with update