Gifts

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

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

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

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!!

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

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!!!

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

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

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...

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.....

Updates

Cami now weighs 5lb 3oz and is doing very well. She has taken breast milk by bottle for the last 4 days. Dr has given the go ahead for 1 bottle feeding a day. I feel very honored that so far I have been the only one who has fed her by bottle. I wanted to breast feed her but the Dr said that we have to monitor how much she drinks, so no breast feeding. I pump every 3 hours and then put it in the freezer and take it to the hospital when they need more for Cami. Starting tomorrow Cami will have 2 bottle feedings a day :O) We will work up to all bottle feedings- but for now we are just on one and then two starting tomorrow. Camryn looks so much like her daddy as well. She definitely has his lips, chin and neck. Unfortunately, the little boy Walker that I asked for prayers for has passed away. Please keep his parents in your prayers.

Cami

Cami is up to 4lb 14oz now. She is getting bigger every day. She looks more like her daddy and we are completely in love with her. Cody has not met her yet and will not until she comes home due to no one under the age of 18 being allowed in the nicu. We visit her every day- usually more than once. We are still at the Ronald Mcdonald house right now as it makes it easier to visit her when you are right around the corner versus being over an hour away. Her head is decreasing in size about 1/2 cm a day so far which is wonderful news! I have been having to see wound care every day due to my c-section incision being infected. I have 2 big holes that have to be packed daily. Hoping that they heal soon so that I can walk upright again, lol. Thanks to everyone for keeping Cami in your prayers- God is definitely looking over our baby girl. Please also keep a little boy named Walker in your prayers as well- he has had 2 surgeries for gastroskeesis (sp?) and is still looking at an uncertain future. Kevin and I have become friends with his parents. Walker is at the same nicu that Cami is in and his parents stay at the Ronald Mcdonald house as well.

Update on Cami

I want to say Thank you to my friend Kristy to updating the blog for me. Cami had her shunt placed yesterday at 2pm. When we left the hospital at around 1am, she still had not completely woken up from anestesia but would open her eyes every so often for us. She has the incision on the right side of her head where her shunt was placed and then also has a small incision in her abdomen. The good news is that we can already tell a difference in the size of her head. We can see and feel part of her skull that was previously undetectable. We can also feel her little soft spot that we also could not feel before due to the swelling. Camryn is an active little girl who gets real cranky when it is feeding time. Due to her surgery, she could not eat for 12 hours, therefore she was not a happy camper when mommy got there 2 hours before her surgery. She was sucking on her bottom lip, her fingers, her blanket and when I offered- her pacifier. Kevin, Cody and I are staying at the Ronald Mcdonald house which is just down the street from the hospital. It makes it easier to be close to Cami- that way we can visit her as often as possible. Since Cody is not allowed in the NICU, my mom and stepdad have been keeping him quite a bit for us so that we can visit Camryn as often as possible. My c-section incision is infected and so that had to be cut open and cleaned out yesterday and packed with gauze. I have to have this done every day until it is healed. Well, that is all for now. Will update when I get a chance or Kristy will.

Also, for those who are interested in donating to the Ronald Mcdonald house for our stay (thank you Kristy for thinking of that)you have to go to

www.rmhc-austin.org ... go to the top of the page and click on "room fee payment" under "room number and family name" you have to put "room #2 Faglie" then you also have to call 512-472-9844 to tell them that you made a payment and who it is for so that it will be posted to our account. If it is not done exactly like this- it will not be applied to our account.

If you have made a donation already- it has not posted to our account- so please call them to let them know that it was made.

Thank you all in advance for any help and/or prayers that you can send our way. Will try to get more pictures uploaded soon.