Hello everyone. I recently had the opportunity to spend some time with my little guy over at Children's Healthcare of Atlanta (Egleston) for a couple of hours. He is doing a little bit better now. He is receiving and maintaining the correct oxygen levels, his heart rate is good, and his respiration levels are ok. All thanks to the ECMO machine. He is heavily sedated so he isn't moving except for a couple of hic ups here and there. I do love the fact that the doctors encourage us to interact with Joseph even though he is in a very delicate state. I was able to touch his hands, rub his chest, caress his head and talk to him. It was a surreal experience! and we get to see him 24/7 while he is on the ECMO. The RN's, doctors and techs are amazing. They really care about getting him well and are very confident in what they do. They also make it a priority to ensure that we are fully informed on what's going on and that we are comfortable in the presence of Joseph under all of the overwhelming machinery and technology thats keeping him alive.
Here are some shots I took while I was in the NICU. I hope these images aren't too disturbing.
Before ECMO
Joseph is on ECMO now (day 1)
Thank you guys for all your support. It has really helped us look forward to the future during this difficult time.
-Sky
64 comments:
Thank for sharing the pics of your little warrior. He is so precious!
Sending lots pf prayers!!
Amber
I love you Joseph. God is by your side. You're a fighter and I'm praying for you night and day.
Actually, the world is praying for you. Thanks to your Titi Leni who sent her prayer request to San Antonio de Padua in Italy.
God bless you my little Angel and God bless your caretakers at Egleston.
Carla, Sky - I'm here. I will always be here.
Mami
Congrats on Joseph's arrival-he's a beautiful boy!! The pictures look so very familiar from when Sofie was on ECMO. I'm praying for Joseph to rest up so he can come off ECMO fighting even harder.
Jen
Carla you have a beautiful little boy!! thank you for sharing the pics with all of us. I am sure he will be better soon specially with the doctors allowing you to interact with him! and how great that u get to be with him 24/7! we will continue to pray for him, and im sure he will be ok, i guess he was just eager to come out and meet you and fight hard to get better soon.
Although i am far i am with you and will be thinking about your family.
Joseph is beautiful!! Many prayers that he has a good night and remains stable.
Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS
Carla and Sky,
I am praying for you guys! Joseph is so adorable! I know that God will get you guys through this hard time!
Love,
Abbey
Your son is so beautiful. We know what you're going through right now, and how hard it can be. Keep the faith that everything will turn out as you want it to. You are in our thoughts and prayers!
hi guys Im a friend of Alicia and have been following your updates ever since she sent the link...I pray for your strenght and for baby Joseph. I have a little miracle at home that is 8 years already. I know what it is to spend days with overwhelming medical terms and machines in the hospital, but know that soon it will be a daze. I know everything will be OK.
I saw your beautiful pictures and encouraging comments this morning...keep talking to the baby and "nursing" him as much as you can. He needs to hear and feel you guys too!
Glad your experience at the hospital is good...these people are dedicated to save lives and LOVE and sympathize with family members.
I will keep you all in our prayers and follow the blog for info.
deinately praying for you guys!! Joseph is sooo precious
Dear Joseph:
I hope you get out of the hospital so that I can see you and play with you.
I pray for you everyday.
Your uncle,
Gabriel
Thank you guys for sharing some pictures of Joseph. Congratulations he is so cute!!! Remember be strong for him and give him all the support and love that you can give him. We all praying for him, he is here now and he is staying with us.
Love;
Santa
Skylar and Carla,
You are incredible parents for giving birth to such a beautiful baby boy. His pictures evoke both tears of joy and tears of pain. We all continue prayer here in Houston and will be in Atlanta soon to hold his hand and hug the best parents in the world. Be strong! Baby Joseph has already made the world a better place.
We love you!
Dad and Meon
Lovely pictures, what a cute little boy. It's great that you are getting to spend time with him. Have you tried changing his nappy yet? It was very terrifying at the beginning, with all the wires around Alina but it soon became like second nature and we truly enjoyed doing the cares.
We are thinking about you guys. Fight little man!
Hugs,
Ingrid, Alex & Alina
You guys are all incredible. Thank you so much for taking time to learn about our experience and for your prayer, support and kind words. Joseph needs all he can get and we love you all for that. Thank God for good people.
Carla is getting ready to go see him on ECMO for the first time so wish her luck.
-Sky
Sky & Carla:
Joseph is such a handsome little guy! We want you to know that you guys are in our thoughts and prayers.
Sending you much love and hugs from Germany!
Tone + Eshe
fight little joseph!! TONS of prayers for all of you guys and his medical team too!! stay strong!
He is beautiful you guys!!!! I already know he is going to continue to be a fighter and get better very soon...god is on your side!
Hello!!! I am a former ECMO mom- my son did not have CDH but had other issues after birth. If you have questions or ever just wanna talk, please feel free to email me at s.k.thomas@sbcglobal.net
My family is praying for your little man. May you both have the strength for him and each other.
Love,
The Collins Family
carla and sky...
Little Joseph is beautiful...he is a fighter and is so lucky to have the most inspiring loving parents one could hope for. Continue to be strong with him...and for him. I love you guys and i'm here too for whatever you guys need.
i will continue to pray for his health and for God to give you the tools to continue to be strong!
luv..
Annia
You two should e very proud! He is quite a cutie.... Looks like he is a FIGHTER, too! You are all in my prayers, and thank you so much for the update and the pictures. I think he is beautiful, just beautiful...
Sky and Carla,
I did not know anything about your new baby and after reading your blog I just can say that I'll be praying the whole time for your family. What stays in my mind since the first moment I met you, is the beautiful couple that you are and that you've been blessed with your two girls and now with Joseph. Right now I'm pregnant and just by reading what you've been living all these months, you have inspired me with your strength. If I can help in any way, please let me know. If you need help with your girls, Martin and me will gladly collaborate. Always keep in your minds that God is on your side.
Nathalie and Martin Gaitan
Dios te bendiga tu angelito, aqui pensando en ustedes. Cuidense mucho.'
Omar -
What a handsome little man you've got there! Congrats mom and dad!
I am the mama to Makena, born with LCDH 9.30.06. The pictures of Joseph on ECMO are so reminiscent for all of us who've been on this crazy journey before.
Looking forward to following Joseph's progress-beautiful pictures, by the way!
Best wishes,
Libby
Makena's Mama
www.caringbridge.org/visit/makena
Praying for your little man. He's a fighter as all these babes are. Take care and know that God and his many angels are watching over your son.
Amy Miles
Hey Sky and Carla! I haven't seen you guys in a long time. Your son is amazing! You and your family are in my prayers. I'd love to come see you all real soon when you have some free time. Please give me a call anytime. Tyler
Happy Birthday Joseph! You take beautiful pictures. Continue taking them and cherish EVERY moment you have. I just emailed you :)
He is absolutely gorgeous! We are praying faithfully for him and y'all. If you need ANYTHING please do not hesitate to ask. We are here day or night!
The Mendez family is praying for you! Love yall guys ~ Gods with yall~
Dear Joseph:
It is just amazing how you have brought so much light into my life. You have also brought me closer to God and my faith has just grown so much in just two days. All because of you. You have come to change our lives. I continue to pray for you many times during the day and every time I wake up at night. You are always in my mind and my heart. God is watching over you. I love you! Everything will be fine! We just need to trust the best doctor ever, God!
God bless you, your parents, and your medical team! God has equipped you to heal and rebuild more than we can imagine!
Luv and blessings,
Grammy
Carla and Sky...We are all here praying for you. Joseph is a fighter and I cant wait until I get to see all of you guys and meet my new nephew next weekend. I'm here for anything you need. I love you guys
Ceci
Congrats on his arrival, he is beautiful. Hang in there, it is a rough road on ECMO, but it will help him get the much needed rest his lungs will need to fight this battle.
Lots of prayers coming your way.
Jaime, Mommmy to angel Ryann 1/5/09
Joseph is soooo beautiful!!! God is watching over him. Joseph & your family are in my prayers.
Hey guys.. All of u are in my prayers and congradulations.
Thanks for sharing the pictures! He is adorable and he is a fighter! Mia and I are praying every night for him and we'll continue to do so! If you can play some music for him while he is there please do so...Music makes miracles in peoples lives. I have the perfect CD if you are interested! Keep the faith and you'll be through this faster than you know! Love you guys!
Joseph is so cute! I am thinking of you guys and hoping and praying for you!
Lisa, mom to CDH baby Ava (due 5/16/09)
www.caringbridge.org/visit/avarosedaher
To my 1st born Skylar.Congratulations again on your little miracle. Joseph Carter DeJohn is just as beautiful as your were and still are when I bought you into this world. Although he may have many struggles ahead of him, God is always with him.Believe in the Power of Pray. Love you and your beautiful family...Mom
I had a feeling that you had him this week but haven't had to time to check the blog. Your family is in our prayers. He looks strong like he is fighting to get through this and play with his sisters. Stay strong!
Love,
Roy + M'Kaneghay
Welcome to the world, Joseph!!!
We just found your blog, I wish we had found it sooner. If you need anything at all, please let us know!!! CHERUBS is a group of over 2600 CDH families who support each other and give information and encourage research. You have a wealth of experience and support to tap into any time you need it!
http://www.cdhsupport.org/members
Over 100 forums, including one for families in GA. Tons and tons of stories, photos, info, and more. Membership is free.
You are all in my prayers!
Dawn Williamson
CHERUBS President & Founder
CDH Mom
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
http://www.cdhresearch.org
Its Dylan....I pray that the Most High God helps you and gives your precious one more strength....More prayers...much love my family...betta days will come. Just Believe that
respect,
Dylan DilinJah
Thank you all once again for the prayers, support, love and encouragement. God bless you all for having such an open and kind heart. Joseph is doing a little better now. I'll do another post tonight to give you an update on what's been going on.
with love,
Sky
Carla & Sky;
Thank you for having us update with Joseph condition. We keep praying for him and for the whole family. Joseph is a fighter and he will make it thru this hard task.
Love;
Santa
Joseph looks strong and beautiful!
You have a beautiful family. Prayers for Joseph and the family are constantly being said.
Proud grandfather Dave sent us the blogspot to check on Joseph's progress.
God Bless and keep you all strong. - Alice & Family & Clear Springs family
Carla/Skye
We are praying every prayer for you guys, we love you and know God will work this out. Joseph is a beautiful little boy. Let us know if you need anything!!
Love you guys!
Charles, Robyn & Nadya
Clyde and I continue to keep you guys in our prayers. Jospeh seems to be a little warrior and I am sure that he will continue to fight and grow stronger every day. I pray Gods speed in his recovery so that he can come home and be with his family. Thanks so much for sharing such a personal journey with us. HUGS and PRAYERS!
~Clyde & Angela
He is beautiful!
Hi Skylar, this is Sara Sowell- one of your dad's students. Just wanted to say that Joseph really is such a beautiful baby, and you and your family are so incredibly strong to be dealing with situations like this. You have great parents that would drop everything to come and support you. (: My family prays for you guys every day- I hope for all the best.
My dear little man:
Today the mass was offered for you. You will be fine. Many people are praying for your healing. God keeps watching over you. He knows when to intervene. We have to be patient.
I luv you and can't wait to hold you. You are so precious.
Blessings,
Grammy
Sky + Carla,
Congrats on Joseph! He's adorable! We will keep him in our prayers. Stay strong!
~Jinette & Fred O.
Just checking in. I know you are probably overwhelmed, but wanted to make sure everything is ok. Did you get my email? I hope I answered some of your questions.
I love you all... I am very proud of you guys I know it is difficult dealing with these things, but like we all know we are a strong family and together we can do anything!! I hope I can be there with everyone soon!
Congratulations on such a beautiful baby boy! I work with Joseph's proud Grandfather Dave, and he shared this link. It is obvious that Joseph has already made an incredible impact in the lives of many. Your family and the medical professionals will be in my prayers!
Rachel Behnke
Hey Carla and Sky,
I am glad that Joseph is doing better. My family and I continue to pray for him every night. and thank you for keeping us posted. I hope he gets to go home soon and play with his sisters who must be anxious to meet their handsome little brother.
Thinking of You guys
Diana and Fam.
hey to the DeJohn family my name is alex and my prayers and Joel osteen personally prayed with me to ask god for strentgh for baby Joseph and is sure thAt he is a blessing to your family me and Samantha prayed as well giving thanks for gods strengh over your family
he's such a fighter. our prayers are with him.
Joseph is such a fighter and I admire you guys for staying by him during this time. I hope and pray that everything goes well.
Chelsea : )/Clear Springs StuCo
dear joseph, i dont know you yet, but i do know the amazing people in your life, i know your grandpa dejohn cares for you so much,
ill keep praying for you and the family
best wishes, jennifer (mr. d's student)
To the DeJohn family! I hope everything turns out ok! My prayers are with yall and God bless! Hope things get better asap!
~ Michael Sanchez
Volt Vision
To all of the family members of Baby Joseph, your all in my prayers along with Joseph. stay strong and remember to keep your faith. there are many people out there who care about all of you. and joseph, youve got a great gran daddy who will always be there for you. God Bless.
I hope everything goes well. My prayers will be with yall. May God watch over him and help both him and yall through this hard time. See you Thursday!
~Matthew
Carla and Sky, My name is Sheree Irvin and my husband and I are expecting a little girl "Oakley" in three weeks that also has CDH.
Oakley will also be Eagleston.
We are planning on turing the NICU this Thursday.
Our Thoughts and Prayers are with Joseph and you.
My heart aches for what Joseph and your family are enduring. I do not know you personally - I have seen your beautiful photography and learned about this from The Atlanta Nest/Bump Board. I have sent up prayers for Joseph and your precious family and know that they're being heard. God Bless you and your family...and try to remember that God has the last word. Don't give up - maintain your faith and hope no matter what. Hugs!
Good luck on that fight joseph you got a whole bunch of people praying for you!
hey Carla and Sky I just wanted to let you know that our little girl is now beside Joseph at Egleston. Her name is Oakley. I have been keeping up with Joseph since he was born. Our Oakley also has CDH.
I have not been discharged from the hospital but my husband Brian has been visiting with Oakley daily. We are keeping Joseph in our prayers.
The Irvin's Brian and Sheree
Post a Comment