Feelings

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*

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?

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

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

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

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

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

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

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,

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

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

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

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

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...

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.