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