Sorry So Long w/o post

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!!!

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

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??

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!!

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??

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

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

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

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?

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

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

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!!