Oakley 9 months of pure Joy!!

I haven't post in a long time Brian has been trying to do up dates every now and then.
Our home computer is shot and Oakley and her brothers keep me so busy that I just haven't had time.
Today is the first day that I have taken a few minutes to look at all the babies that I have followed for
so long to see how they are thriving. NAYELIA continues to be an inspiration.
I still can't believe that the survival rate is 50% it seems like it should be so much lower. I see so
many sad out comes over the miracles.

It is without a doubt that each day that I wake up I know that we are blessed with a miracle in our lives.
We went for Oakley's 9 month check up last Friday. She only weighs 14 lbs 2 oz she actually dropped off
the growth chart. The pediatrican assured me that she is healthy and not to worry. That she is just
going to be petite. He told me that in all his years he has never seen a CDH baby do as well as our
Oakley. He also said that he hoped that we knew this Holiday season we have a true Miracle.
Oakley is pulling up and starting to cruise around the furniture holding on. She is not crawling but her
brother Peyton never crawled, I don't think he ever walked he just started out running and hasn't stopped yet!
All three boys are such a huge help daily. I hope that everyone has a wonderful Thanksgiving next week.
I promise to try and post some pictures soon.

With Love,
Sheree (Oakley's mom)

8 Month's of pure joy

Oakley continues to do well, she amazes us each and every single day. She was very hyper this morning playing with her big brothers. She is still very small for her age but this was expected. We estimate that she weighs around 14 pounds, I could be off a little. She enjoys being read to and also loves the TV show sesame street. Our boys love her so much and she loves each one of them and she will just laugh at them when they are playing with her. As far as the CDH we have had no complications since Oakley has been at Home. We still are very thankful to all the Surgeons / Doctors / and Nurses that helped take care of our little miracle and we know that each one of them played their own special part in helping our little girl become healthy. We are very thankful to have our little blessing and never will forget the ordeal that we went through. So always keep faith you never know when you will be blessed.

Brian Irvin
(Oakley's Daddy)

Still Doing Good

Oakley is now 7 1/2 months old and is doing great. She is around 13 pounds which is small, but the doctors say that she may always be small and petite. She likes to lay on a blanket in the floor and she rolls all over the place trying to get things. She had to go for her 6 month checkup a few weeks ago with her surgeon and everything continues to be fine. We have had little to no complications with our little miracle. We had to attend my Grandfathers funeral this past week and we had many people that just wanted to meet Oakley, because she had been on there prayer list at Grandads church, but they had never met her. We thank God first for our miracle and everyone that said a prayer for our blessed little girl. She is proof that prayers are still answered. Our computer at home crashed so it is very hard for us to keep the blog updated like we should, and we apologize for this. If you are new to our Blog and you are going through the CDH nightmare our hearts are with each of you and we pray that you never give up hope and that you stay close to God and believe in the miracle of prayer. May God bless each one of you and your family.

Love, Brian Irvin

6 months old

Oakley turned 6 months old today and she is doing great. She is the queen of the house and I think that she knows it. She loves to lay on her stomach, when we lay her in her baby bed she immediately roles to her stomach and then just stares at you. She has been a blessing and we know this and we thank God for all of it. We know that without him none of this would be possible. Oakley continues to amaze us each day at what a wonderful baby she is. Oakley is still very petite and probably always will be, she weighs a little more than 11 pounds now. Oakley is a wonderful sleeper and only cries when it is time to eat. Our family has been blessed and we all know this and will never take our little miracle for granite. We thank each one of you that have read about our child and have prayed for her. We continue to pray each day for any of you that are going through CDH with your child, may God bless each one of you like he has blessed us.

Brian Irvin and Family

5 Month's Old

Oakley is now 5 months old and is doing great, between Oakley and her three brothers we are staying very busy. Oakley is growing, she is now around 11 pounds and is the happiest baby that you have ever met. She has the most beautiful laugh and the greatest personallity, we have been truly blessed to have such a wonderful daughter. For the people that read our Blog that are going through what we have with CDH, our hearts go out to you. The one thing that you cannot do is give up, we were very lucky with Oakley and blessed that we got through this as easily as we did, but the one thing that never changed was our faith in our Lord and Savior Jesus Christ. We prayed and prayed everyday, along with friends and family, our church and church's that we don't even know how they new about Oakley prayed for our daughter, and we were blessed with wonderful doctors, but without God, none of this happens and we know this. May God bless each person that reads this, and thank you for your prayers

Sincerely, Brian Irvin and our Family

Happy Father's Day!!

Happy Father's day to all the wonderful Dad's out there.
Oakley went for her four month check up this past week.
She is now 10lbs 8oz. Oakley's doctor said that she is very
danty and that she will most likely be a very petite
little girl. We are ok with this as long as she is
healthy. She also told me that Oakley is right where
she should be developmental wise except for talking
and that she was above her age for that. Oakley talked
the whole time. She is saying HEY to everyone that
says hey to her. It is sooooo sweet.
Oakley got her second round of shots and this time
it wasn't as bad as it was at 2 months. She didn't
cry near as much so I didn't either. It brakes my
heart to see her hurting.
We are truely blessed to have our little Oakley
she is our piece of heaven along with her 3
awesome brothers.

Peyton's finger healed very nicely (Thanks for all
the prayers and well wishes) and he was
able to pitch in 3 All-Star games. His team
lost in the semi finals but they had a nice
run for the district championship, Peyton
told everyone that the winners better
enjoy it because next year his team was winning.
Peyton would play baseball 24/7. He just
loves the game.

Christopher has started All-star practice
and will start playing July 6th.
Our summer has been very busy this far and
shows now signs of slowing down.

Auston will start an internship at a local
funeral home next week. This is a great
opportunity for him. He has talked about
wanting to be a mortition for years and this
will give him the opportunity to see if it is
really what he wants to do.

Brian and I are loving every moment that we have
with our family. We have been blessed as parents
and thank GOD dailey for our daughter and our 3 sons.

May God continue to Bless you all. I will post some
new pictures soon.

Hard to keep up!!

It is so hard to keep up with posting on the blog.
Oakley is doing great she is weighing around 9 1/2 pounds.
She is talking (baby talk) alot, she is laughing out loud
everyday and loves to be talked to. She is amazing. She will
be 4 months old on Friday and it doesn't seem like it. Time
sure does fly.

Oakley isn't the only one that has been keeping us busy, now
that school is out our three wonderful boys are keeping us on
our toes. They are wonderful helpers.

Peyton our youngest son is 7 and this is the first year that
he has been eligible for All-Stars in baseball. They announced
the players on June 1st and he was so excited about making the
team. He told me he had waited his whole life for this.

Friday night while at practice Peyton went to the bathroom, the door
is a big metal door with a spring that makes it close really fast.
Well Peyton wasn't able to get his hand out of the way before the
door closed and it cut the end off one of his fingers (only a little
skin held it on). It cut it so bad that you could see the end of the
bone. The doctor told us that if it had been a hair more it would have
been much worse. They were able to stitch the end back on but are unsure
if it will hold. We have to take him Monday to see an Orthopedic surgeon to
make sure the finger is healing. Peyton has done great. He hasn't complained
any. He is only worried about being able to play baseball. Please
keep him in your prayers. He is a tuff little guy.

I will post again soon.

Our Miracle is 3 months old today!

Oakley turned 3 months old today. We have been blessed
beyond words. Oakley is a Little Miracle and we tell
her this every day. As she grows we will tell her of
all of her CDH Friends that are now Angles in Heaven.
Oakley weighs 8lbs 14oz and is growing so much. We can
really tell that she is getting longer.

This year Mothers Day was the best that I have had in
my 14 years of being Blessed as a mom. I was able to
celebrate with my 3 wonderful sons and my beautiful
daughter. Sunday was also BABY DEDICATION at chruch.
Oakley along with 7 other babies were dedicated to
the Lord and the Church pledged to help guide our
precious babies in the way of the Lord.

We also had the opportunity the Sunday after Easter
to tell Oakley's story to our whole congregation.
I can say that there wasn't a dry eye in our whole
chruch. There is around 500 people each Sunday at
our service and if each of them tell at
least one person about CDH, what a Blessing that
will be.

We continue to pray for the families that we have
met through this journey and we are so greatful
for the friendships we have made.

May God Bless you all

Oakley is 11 weeks old

Oakley is now 11 weeks old. She has really started coming out
this week. I stopped giving her the reaglan on Monday. So far
she has had no signs of reflux but she is still taking the
Zantac. She is staying awake a lot more and is able to interact
with us. One of the side affects of the reaglan is drowsiness. Oakley
was sleeping 18 hours a day and when she was awake she was eating.
Now she is talking (baby noises) and she laughed out loud for the
first time today.
Oakley is a little spoiled but I tell everyone that she isn't that
she is just LOVED a whole lot, which is very true.
We are so Blessed to have a little girl in our lives to go with
our 3 wonderful boys.
Christopher and Peyton finished CRCT testing this week and Auston
is getting prepared for end of year finals. He will be getting his
learners license this June. It is scarey having a new baby and a teen
age driver all in the same year.
Brian has been having to go out of town on Tuesday for work, It hasn't
been to bad the boys are all great helpers. It is only hard on the
weeks that Christopher or Peyton have ball games.


Warm hugs and Love to everyone. May God Bless you all

Love Sheree

10 weeks 3 days

Oakley is now weighing in at 8lbs and we starting weaning
her off of the reaglan today. Since she has had no
signs of reflux we thought that we would try her off of
it to see if she would be able to go with out it. On the
reaglan she is sleeping around 18 hours aday. She spent
much more time awake with me today. It was nice being able
to play with her more and seeing her beautiful smile.She
is such a wonderful baby.

Last Sunday we were asked to tell Oakley's story at church.
Brian and I were both nervous but when we had finished I don't
think there was a dry eye in the church. Everyone had been
praying for our Oakley but not everyone knew what CDH was.
We are praying that telling 400 people that they will each
tell at least one other and so on.
Our youngest son was saved last Sunday also. So it was another
Blessed day at the Irvin home. God has and continues to Bless us
in so many ways. Our paster made a statement at the end of the
service that I have really thought about all week. He said that
Brian and I could have easily have turned our backs on God and
said how could he have done this to us but instead we turned to
God and ask that he guide us through. I can't imagine how anyone
can get through life without turning to God. He blessed us more
than we will ever deserve with giving us our Little Oakley. God
gets all the Glory for Oakley being here with us today. I thank
him everyday for her and our three wonderful boys.

Christopher and Peyton are both playing baseball and it was a beautiful
weekend for ball. Both boys pitched in their games Saturday and both had
amazing hits. Christophers team walked away with a win and Peyton's team
lost. Both had a wonderful time and that is what matters both.
Auston doesn't play baseball anymore but he likes to keep score for his
brothers.

Please continue to pray for all the families that are suffering from the
loss of their little angles. So many babies do not survive CDH and it has
to be less than 50% that do survive. I have followed 6 CDH Babies that were
due around the same time as Oakley and other than Oakley Baby Davis is the
only other survivor. This breaks our hearts,for those that are expecting CDH
Babies do not give up Hope.

Oakley's two month check up

Oakley had her 2 month check up today and the doctors remain in shock at
how well she has done. She is still on the small size, Oakley weighed in today
at 7 lbs. 14 oz and is now 20.75 inches long. She still isn't as big as anyone of
our boys at birth. Oakley also got her first round of shots today and I don't know
who it hurt more Oakley or me. The Doctor went ahead and put in for Oakley to recieve the RSV vaccine's this fall.She said that it is really hard to get children
approved for these shots because they are so expensive. She does feel that they will approve Oakley because of the CDH. Brian and I really do pray that this will happen our youngest son Peyton had RSV as a baby and it was hard enough on him and is had to healthy lungs.

Please continue to pray for baby Kaden, he came off ECMO yesterday but still has a battle ahead.

Thank you to everyone that continues to pray for our little Oakley she is a Miracle and we Thank GOD everyday for her.

Love Sheree

Oakley is 8 weeks and 1 day old.

Oakley is now 8 weeks and 1 day old. We have been home for 4 weeks today.
Oakley continues to do wonderful. Being our fourth child she is by far the best
baby that we have had. She sleeps well, eats well and is just such a joy to be with.
She does sleep most of the day and wakes up around 8pm and stays awake until 12am. She is starting to makes lots of noises and trys really hard to coo but nothing
has come out just yet. Oakley's brothers think that she is all that and then some.
Peyton our 7 year old calls her Oakley Doodle Bug and he tells her all the time that
she is a little miracle. Christopher or Fatback loves to play with her and loves to wake her up to talk with her. Auston our oldest thinks if she crys that someone is hurting her when all she needs is a diaper change or a bottle. I never would have thought that they would all be so wonderful with a little sister. All I can say is the boys will never knock on our door with these brothers.


Brian and I had prepared ourselves for so much, when we found out that our baby had CDH. I say this knowing that I never prepared myself for the worse, which would have been loosing her. We never concidered that to be an option for us. Some how we knew that she was going to be ok and God gave us that peace.

We pray for all CDH babies and their families daily. We have met some wonderful people through this whole thing and we know each day that we are amoung the few that are truely Blessed.

CDH Awareness day

While Oakley was at CHCA Egleston, we met many wonderful people, nurses (Kelley we will always remember what wonderful care you gave to our daughter) and doctors.
We had the honor of meeting one family that have left a lasting impression on our lives and in our hearts, Sky, Carla and warrior Joseph, I can not even start to say what amazing people Sky and Carla are and the support that they gave Brian and I. Joseph lost the battle against CDH after 23 days of life. There is not a day goes by that we do not think of him and how hard he
fought to live, as Oakley gets older she will know about her first friend in the NICU and how hard he fought to beat the CDH monster. In honor of Joseph our family released 23 ballons today in memory of the 23 days that Joseph had here on earth and in memory and honor of all the CDH Angels here on earth and now in heaven.

With love the Irvin Family

Another Great Week

Oakley was 6 weeks old yesterday and had another fabulous week at home. She is eating great from her bottle and is just a wonderful baby. She had another check up this week and everything was fine, she now weighs 6 lbs. 14 oz. We are very proud of her and of all of her accomplishments. She has had allot of people come and visit her, and check up on her this past week. Oakley's brothers have all fallen in love with their little sister. We wondered how they would all take having a baby in the house, but they have all been wonderful and they all love to sit and hold her and they all talk to her all the time. Oakley loves to be held and talked to, she will just stare at you and make little sounds. She loves to stick her tounge out, and we think that this is from the feeding tube in the hospital. Since the tube was removed she sticks her tounge out like something is supposed to be there. She is truly wonderful and we are blessed as parents to have a healthy child that went through CDH. We pray everyday for the babies with CDH and the parents of babies with CDH. May God bless each of you just as he blessed us. CDH is a long journey and we pray for each one of you, and we hope that in someway we can help families through this, even if it is just with encouragement. Our hearts and Prayers are with you.

First Visit to Church

Oakley attended her first Church service yesterday, and everyone was so happy to see her. She slept through the service and after the service was over she met allot of people that have been praying for her. We are blessed to have a wonderful church family and a God that answers prayer. We also attended the evening church and I think that even more people came to see her after that service. She was so beautiful in her little dress and her bow in her hair. We are very lucky people to have went through what all we went through with her. We know that allot of people pray for our little girl everyday and we want to say thank you to each one of you. God has blessed us more than our family deserves and we are very thankful. May God bless each one of you as much as he has blessed us.

Thriving At Home

Oakley has been home a week today and she has thrived since arriving. She is doing so good with her feeds, and is a wonderful little girl. She has to go back to see her surgeon today and we are expecting nothing but good things from this visit. Oakley scars from her surgery are very small and unless you were a person that new what all she had been through you would think that she was just as normal as any baby. She is the best little baby, she very seldom cries and loves to be held and talked to. Our three boys love there little sister and are so happy to have her home. She has everyone wrapped around her finger, just like it is supposed to be. We have truly been blessed with this little miracle and we thank God everyday for this.

Oakley's Home

Friday March 13th Oakley Irvin went home, and God has answered our prayers. Sorry we didn't post this until now, but we wanted to try and have the weekend to ourselves so that our family could enjoy being all together for the 1st time in 29 days. We didn't tell the boys that Oakley was coming home so they were so shocked when Sheree walked through the door with her. She came home with a feeding tube and Monday the feeding tube was removed because she was doing so good with the bottle. She is a true miracle and we have been so blessed. Oakley just looks around at everything, she knows that she is in a new place and she seems to be so happy. It is very nice for us to look at our daughter without any tubes or wires hooked up to her, nothing beeping or lighting up letting you know that something is wrong. We are very appreciative to all the doctors and nurses, but we are so happy to be home. Thank you to everyone that is praying for our family and please continue to pray for us, we are examples of how much prayer does work. We thank God for all our boys and our miracle little daughter. God bless each one of you.

Playing the Waiting Game

We have now been at Egleston for a month and are just waiting on Oakley to get well enough to come home, we have never went through anything as humbling as this. Oakley has been strong throughout this entire process and continues to get stronger and stonger and her big brothers had better watch out because she is going to be something else when she gets home. We have been so proud of Oakley throughout this entire CDH journey and now we are ready to move forward. We hope that through this blog some how and in some way we can help someone who's child has CDH. When all this started we knew nothing about CDH and had never heard of this killer. Through other peoples blogs we found comfort and my wife used to keep up with about 10 babies and check on them everyday. I know that our faith has grown stronger during this. We have truly been blessed with a miracle Daughter and we are very thankful to all of you that are praying for our daughter and our family.

Visiting a Miracle

I got to go and see our little Miracle girl yesterday, and I enjoyed every second of it. We sat around alone just enjoying each others company. Oakley loves to be rocked and she did so good with her bottle. She is only taking her bottle every other feeding, and this is our hold up. We need to get her strong enough to take the bottle all of the time. She has done so good and we are so proud of her, we are just very ready to get her home. The nurses in the A side of the NIC unit did a great job and we have nothing but good things to say about all of these people, the B side is more laid back and not exactly what I expected most of this I am sure is from being on the A side for as long as we were and I am not knocking the B side it is just more laid back because the babies are more healthy. Oakley continues to excell and we are so proud of her. We thank God everyday for our little Miracle girl and the blessings that he has done for us. We also want to say thank you to each one of you for the prayers keep up the good work, God does answer prayers.

Brian

No more Vent

Oakley came off of the Ventilater on Sunday. She has been doing great since. She is up to 45 ml on feeds (via feeding tube). We will start trying to bottle feed tomorrow. Please pray that she does well with this. She loves her paci, I hope that is a sign that she will love the bottle as well.
I was able to dress her for the first time today and yes she was wearing pink!
We are now waiting for a room to open on the B side of the NICU. This is a huge step closer to the H word. The doctors keep telling us not to tell Oakley how well she is doing that she doesn't know and that we don't want to tell her.

Brian went home to be with our three wonderful boys a week and half ago. The nights get pretty lonely but we both know that we are where we need to be. If anything the whole experience of CDH has brought our family, it has brought us closer to GOD. As a whole our families FAITH has grown so much over the last seven months. The day we found out that Oakley had CDH we had no clue what it was and I remember walking out of the doctors office crying and praying at the same time. God is good we don't always understand why he does somethings but he is always good.

Brian and I are greatful to all that have been and continue to pray for our little Oakley. Please continue to pray for Oakley and our family. GOD is listening!!

Sheree

Day of Prayers

We were informed by Sky and Carla yesterday that their son Joseph passed away, our hearts and prayers go out to this wonderful family. Sky and Carla are the first people that we met at the hospital that had a child going through the same thing as Oakley. We had read up about CDH and new just about everything we could know we thought, but until you talk to someone that is going through it just like yourself you really don't understand that there are sides of CDH that cannot be taught by reading about it. Sky always referred to Joseph as a Warrior, I don't think that I will ever hear that word again and not think about Joseph. CDH is the toughest thing that we have ever battled with any of our kids and these babies are all miracles that are born with CDH. We also met Joseph's sisters, these are two of the most precious little girls in the world, I have been and will continue to pray for them everyday. Please continue to Pray for our little Miss Oakley and continue to pray for Joseph's family. Our family has been blessed to have met Mr. Joseph and his wonderful family.

2 WEEKS OLD TODAY

Oakley had a good night last night, some days are better than others and we are being patient. She is a remarkable little girl and continues to be strong. The Doctors are slowly weaning her off of the ventilator. This process has been allot slower than we expected. She is so tough the Doctors have taken her off of the Morphine and I think that this will help her coming off of the ventilator. Oakley has done great considering what she has been through and we know that none of this would be possible without all the Prayers that she has received and we also know that the hands of God are on her at all times and he is guiding her through this tough journey. Please keep praying for our family and especially for our little Oakley. We are truly thankful to each one of you. We are also very thankful to our family members that have visited, called, and been there for our family, we Love each one of you.

Day 12

Oakley is doing very good as she has been throughout her "CDH" journey. We have been blessed with a great amount of prayer from old and new friends, and even people we have never met. We would like to say thank you to each person that has prayed for our little girl, she is truly a miracle and we thank God everyday for her. The process of being taken off her ventilator is slow and some days she does very good and some days she has minor set backs. We know that in our hearts she is going to be fine, but it is very hard sometimes trying to stay patient as she heals. We are so ready to take her home to see her 3 big brothers, but we also know that she is not ready for that step yet. The doctors are slowly taking her off of her meds now and she is staying awake a little longer each day. Sky and Carla have been great and we are so proud that we met them, as hard as this situation is, it is nice to talk to someone that is going through the same things that you are. We pray for them and Joseph everyday, just like we pray for Oakley. God Bless each one of you that are reading this.

Brian and Sheree

Oakley's Surgery

Oakley had her surgery today and is really doing great. Her stomach and intestines are all that were up. They were able to close the hole in her diaphram by using her own muscle and tissue. The surgeon told us that the chance of her ever reherniating are very small, since they did not have to use the patch. She had the surgery Laproscopic and only has three small incisions on one of her sides. As she grows I don't think you will be able to notice unless you know what she has gone through. Oakley is a special little girl and has amazed us everyday. The Doctors and nurses here have been wonderful and have given our little girl the utmost attention. We have loved everyone at Children's Health Care of Atlanta at Egleston. This place is full of miracles that happen everyday. We appreciate all the prayers that we have received and please continue to pray for Miss Oakley, because now the healing process will start she still has a long road ahead of her.

Welcome to the world Oakley

Oakley decided to come and join us a little early. Oakley was born on 2-12-2009 four weeks earlier than expected. She has a head full of hair and is really doing good so far. We give all the glory to God for the health of Oakley and we pray that this continues. We met Joseph's parent's yesterday and we met Jospeph, he is another baby in the NICU with CDH. Joseph's parents are super nice people and Joseph is a little warrior. It was nice to talk to some people that are going through the same things that we are and understand what we are talking about. As far as the Hospital, the Nurse's, and the Doctors where Oakley is located, they are all wonderful. We have 3 other childrem and during none of there births have I ever seen so much care that my wife and child have received as they did at this location. We are thankful to our family and friends that have been praying for Oakley, God bless each one of you. Please keep praying for Miss Oakley and if you are praying for Oakley please say a prayer for Oakley's new little friend Joseph. The 2 of these babies are beautiful and wonderful and appreciate every prayer that they can get. We Love you all and keep praying for us.

Oakely Elissa Mae Irvin due 3-12-2009

WE have created this blog to keep family and friends updated on our expected baby girl. We found out at our 17 week ultra sound on October 3,2008 that we were having a beutiful little girl.

already having 3 wonderful boys we are so excited. The joy was suddenly shadowed with fear when the doctor came in and told us that they thought that our little girl had CDH (congenital Diaphragmactic Hernia) we had no clue what this was. He then told us that she had about at 20 % servial rate. He sent us home with some fact sheets and told us that he would see us again at 20 weeks to confirm. After leaving the doctors office and getting home I started researching CDH. After reading much information I just cried and cried. I finally realized that If my husband and I didn't have faith and hope how could our little girl survive. I started praying and have been everyday since.
We now know much more about CDH and Oakely is due in 7 weeks. We know that she has a battle ahead of her but we also know that God will get her and us throught this.