Ok where to start. Well we finally know what is happening with Faith. Basically it is a bunch of things. #1 she has pneumonia. She is also MRSA positive again, which could be linked to the pneumonia #2 there is some other type of staph growing in her cultures that is yet to be identified #3 She has tracheal malacia, which means her trachea is floppy and her lings aren't receiving adequate air. #4 She has bad lungs (also know as chronic lung disease that stims from her being so premature and on a ventilator for a long time.) A team of pulmonologists met with us today and basically said that Faith will need to be on a ventilator for a long time (anywhere from a year to a couple of years). She just can't do it on her own. While she does take breaths on her own, she just works too hard to do it all by herself. She needs help. SO now we have entered a whole new world. The world of 24/7 ventilation is a serious thing. The docs said they will not let us go home until we have a nurse with us 24/7. This is what could take a long time. They basically told us Faith will be in the hospital for the next few months. I know, it's crazy. Sometimes this feels like a bad joke someone is playing on us- can it get any worse? Well...I guess it can because we are very blessed to have Faith. We have seen other parents lose their babies and know that they would give anything to trade places with us. Faith seems to be doing better. She is on heavy doses of antibiotics right now- so heavy she had to have a pic line placed today. Pics lines are tubes that are inserted through a vein and go directly into larger veins in her chest. On top of that she has an IV in her head and foot. She has been poked so many times everyone who tries to start an IV in her has a very hard time because her skin is so tough and her veins just blow. It can take a few hours just to get one in!
Alright well that's where things stand now. Thanks so much for all of your prayers- we REALLY need them!
Brian and Jen
13 comments:
So sorry to hear about Baby Faith's latest struggles. My family and i are thinking about you all.
Love,
Carrie and Baby Hannah
My goodness..I am sorry to hear she has to be in the hospital for a few more months but look on the positive.
FINALLY they are finding out what is wrong with her and as bad as it seems right now...she is where she needs to be right now though we ALL want her home with you.
This all can be a blessing in disguise...if that makes sense.
I know you feel so blessed you have her and that is a miracle and a true blessing.
I wont even begin to understand what you guys have been going through and are going through. I can only offer prayer and love to you guys. With some hugs and kisses from Texas! ;)
It sounds like you have great doctors that are trying to get to the root of things and it seems they are! Thats a GOOD thing.
Faith being on a vent for 1-2 years or more will be a trying time but I know you two will do it.
I pray you get 24/7 nurses soon and when her body will be able to substain going home.
I remember when Michelle was in the hospital 2 weeks after she was born for only a mear 10 daysand they had to do the IV in the head. I WISHED I could have taken the pain away from her but KNEW she needed these things to get better.
There is an umbrella big enough..GODS COVERING..no worries!
We love you and if you need anything let us know. I will send this out so others can continue to pray for you guys and Faith.
Faith is sure a blessed girl to have you two has parents!
We love ya!
Aunt Susan and Uncle Mike, Steve and Michelle
XO XO XO
Like always you guys and "Princess" Faith are always in our thoughts and prayers. There is no unanswered prayers....within God's timing Faith will have all of this behind her and ready to live her life to the fullest. God has a wonderful plan for Faith's life, right now it is just hard to see it and to understand why he would put her and you, as parents through all this.
Awhile back when I was having very hard days with Rylie my mom gave me a card that Read.
"There's a saying that God never gives us more burdens than we can bear...And if that's true, then God must think you're very, very, very strong because this surely hasn't been an easy time for you. We wish there was a way we could shelter you from pain and unhappiness, because if there was, we would. But all we can really do is be here for you and keep you in our prayers. You are a child of God. He made you. He loves you and He will not forsake you...that we know for sure. So hang on, keep your FAITH, and know you are loved...because believe me, you most certainly are."
ALWAYS remember we are here for you guys and our prayer with never stop. We are spreading the word and believe me more prayers are coming your way. We Love You Guys!!!
All our love,
Derrick, Charlene -N- Rylie
P.S. Our Little Man weighed in @ 5 pounds 15.9 ounces tonight. Our biggest challenge right now is getting him to nipple all feedings and so our journey continues.
No, i'm afraid there is no single umbrella big enough for what you've had to go through.... No one umbrella xould even come close to sheilding your family from all of the emotional, mentally draining challenges, upswings and setbacks you and your family have been through... But maybe by pulling together the umbrellas of all the friends, family and total strangers who are out here praying for Faith-- who has shown more fight and determination than most adults I know--- I know we can piece together an umbrella so immense, so huge and strong that it will keep you and the see that little angel oc yours through this the fight of her life. I have openned mine up and it is here for you whenever you need it. You will constantly be in my prayers ,tonight and everynight. Love and hope to you all...
Sincerely
kate kimberly
Well I really thought you would have much different news. Todd and I are so stunned to hear this. We are having a hard time with this news so I can't even imagine how you guys are. I am glad she is at Childrens and I can tell you with certainty the pulmo team there is very good, one of the best! You are in good hands! Its time now to start praying for the big miracle! I mean BIG! Time to get serious and pray to have our socks blown off! We all could use that right now!
All in God's time. We are here for you and most certainly will be praying for ALL of you!
Love-
Todd,JoEllen, Walker and Hannah
You've got our umbrella, and our thoughts and prayers too. You are so very brave, and have more courage than anyone I know. Hang in there, and know lots of people are supporting you, and cheering Faith on...
Love,
Grant, Kaia, Connor and Lauren
Mannnnnn... Jen I'm so sorry. I'm getting a new phone in the next few days, and you will be the first I call.
love,
amy
Dear Lord, just bless Baby Faith right now. Give her strength to endure all the poking and proding that she has to go through. Give Brian and Jen comfort and strength to watch that sweet baby girl go through this hard time. In Jesus name. AMEN!
Becky
Proud Military Mom
Jen and Brian,
Our hearts, our prayers, our hopes, love, support and enduring faith is with you. WE are believing with you and praying with you in a miracle for Faith, but if we change our perspective and turn our eyes in a new Direction, the miracle is right infront of you! She is over 9lbs and she is loved by the two most wonderful parents in all the world.
You two have endured more hardship than some of us could ever imagine. WE are so, so sorry this is so hard right now and if we could we would take all of the pain, loss and burden you are carrying and we would carry it for you. Faith will see the day when she is out of the hospital full time. There will come that day, until then she is a living miracle that the Lord has given you to teach you multitudes of life lessons and to teach all of us life lessons. She is serving a divine purpose in numerous lives! Be hopeful, and find restoration in God's promises. He is Faithful, Sovereign and forever has a plan for each and every life He creates. WE love you, we are here for you and we are with you in spirit each moment of every day.
All our Love,
Your Friends who love you
John and Katie
Oh I just can't believe it. All I can say is this must be God's lesson to us all - to keep us all praying, on our knees, and close to God. Praying for Faith just continues to bring God into my family's lives each & every day - it reminds me to remain humble and when I go to complain or think things are "bad" - I have to say - "really are they as bad as it is for Faith" - and I then get humbled.
Oh what an amazing set of parents Faith has......Mike's sister sure did raise one heck of a woman. She is so positive it's beyond my comprehension.( she and Brian) May God build them up and continue to keep them strong. I am so sad for them all..........but at least they continue to discover new things an ways to honestly HELP Faith - this we hope in time will prove to be a blessing - and what allows her to heal and FINALLY come home.
My prayers are with them.
Tobie R. Halliburton
Dear Brian and Jen,
My prayers are still with you both and with Faith. I will continue to keep her on my church prayer chain list.
Your friend, Beth
I am here to with my umbrella to add to your wonderful family and friends. I will continue to pray for your family. Also please know I am happy to come to the hospital for pictures anytime. (((HUGS)))
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