Raina is not doing well today. Currently she is in the middle of her second surgery today. The details are on the caringbridge website. She definitely needs a touch from God today.
Prayers are going out as I type. Hugs to all.
Oh Dear, That is sad news. I haven't had a lot of time for posting but have been thinking of your family. I will send some extra T & P's tonight. I am so sad for all the problems that Raina and your family are having and pray for a brighter day tomorrow. Is there a link for caringbridge that I missed?
Prayers going out for Little Miss Raina from Lakeland, FL.
And prayers from Orlando, too.
Poor little sweetie has had to fight so hard at the beginning of her life. Hugs to all of you.
Salijo, I've been reading the updates on the caringbridge website.Raina has had it tough so far, but she is so blessed to have such wonderful relatives and friends. And she has already made this world a better place because she is the source of such an outpouring of love. Prayers continue for all of you.
This morning the doctors told Nick and Julie if they don't see a significant improvement in Raina's condition by Monday they will step back and make her comfortable.
Nick is holding on for a miracle by Monday. He said when the doctors first wanted to deliver her they told them then there was nothing they could do. When they went to deliver, they said, oh, she's better, let's wait. Mama Julie is another case...a mother's tender love....
Me? I keeping wondering what other words I could have prayed...what more could I have said to bombard Heaven and the Throne of Grace to make little Raina every whit whole.....
I called Salijo at work and she is working on getting here....maybe her other son can bring her down...don't know. We're kind of in shock and in a fog right now.
Thank you for the update. I'm sure it's difficult to share such hard news.
Please don't question yourself or beat yourself up! I'm certain that God didn't decide the outcome of this based on the frequency or accuracy of your words. Your love for your family and this little child have shown through every post you've made about this since you found out there would be problems. Sometimes there aren't reasons why things happen, good or bad. All we can do is hug our loved ones and share the strength and comfort.
Still hoping and praying for you all,
Keep praying, it is what we can do. Pray for His will, pray for strength to accept it and that someday perhaps we will know why. Thanks for the update.
((hugs and prayers))
Raina has survived her surgery and is doing as well as can be expected....actually, she is doing better than expected because the doctors admitted after the surgery that they weren't entirely positive that her lungs would work. The next 48 hours are critical.
Julie has posted an update to the website journal with more details and a couple more pictures from our "photo shoot" last night.
If you need the website address, please either email my mom (Sharon G/FL) or me.
Thank you all for your prayers. Not only are they working, Raina is making US medical history.
Raina continues to amaze the medical staff and has become quite the celebrity in her 19 days of life. They are still having problems in getting a balance in certain areas, but it appears her lungs are improving to the point where the doctor thinks she will meet all the criteria to be put on the heart transplant list sometime this coming week.
Thank you so much for your continued prayers for her.
Thanks for the update, What a tough little girl.
Raina will be 4 weeks old on Monday and this is the latest update:
For months we've seen doctors, nurses, and techs look at us with pity, certain in their knowledge that our baby was most certainly going to die. Today the 'impossible' was proposed. Due to what Dr. Turrentine saw in Raina's heart while testing it without machine support yesterday (at least as much as he could without removing the Berlin Heart), he now believes that pursuing recovery of her own natural heart might end up being the best course of action. This isn't a sure thing, but the fact that it would even be brought up as a possibility is nothing short of miraculous.
We don't want to get ahead of ourselves. We remain grounded knowing that she is still very critical. The Berlin Heart, while still needed to help give the left ventricle the relief it needs, is still clotting and unclotting which poses significant risks. The current plan is to remove the device mid-week to late in the week, depending on how the clotting looks. These plans tend to change frequently, as sometimes things go better or worse than expected.
Her kidneys still are not really producing urine in any significant amounts. She will put out about as much urine in a day as she should in an hour. Dr. Jeff, the Nephrologist, did tell us that there was no reason to believe the kidneys are actually damaged. He also said that kidneys will sometimes 'hit the pause button' on their own as a matter of self-preservation. He also explained that often in those cases it will take the kidneys longer to resume functioning than it did to halt it. They will continue with dialysis for the time being, drawing fluid off of her.
We are continually amazed at the strength God has given Raina and are thankful for the progess in her health.
For those who have difficulty getting into Raina's website:
MONDAY, DECEMBER 08, 2008 12:56 PM, CST
Guess what....Raina Marie created some pee! Since 7am she has been putting out 3-6 mLs of urine per hour. Good minimal urine output for her size is 3 mLs per hour. My unprofessional opinion is that her kidneys have decided she is well enough to 'unpause' their function. Despite her urine output, she continues to let go of 15-20 extra mLs of fluid in each dialysis cycle. She should be shrinking back down to Raina-size soon. Hallelujah!
Other good news is that she has been weened on her intake of Nitric Oxide. Yesterday, she was weened down to 42 breaths per minute from her ventilator. She also remains at 100% oxygenation in her blood. Her lungs continue to get a lot of support, but they have also improved enough for these reductions. Gradual improvement is great!
Raina's Berlin Heart continues to make clots. She currently has another sizable clot on the pump. There has not been a decision yet about what to do because the awesome government has untimely chosen Dr. Turrentine for jury duty. Although he will not have to serve (because of his important position here), he still had to report today to be rejected. Good old jury duty...
Thanks for the update. You all have been in my prayers and thoughts. Raina is a blessed baby to have great care and great family. May these little improvements continue until she is well and home.
Keep us updated when possible.
Little Miss Raina is one month old today.
WEDNESDAY, DECEMBER 10, 2008 02:36 PM, CST
Happy 1 month birthday Raina!
Raina received her first small little dose of 'food' today. She received 3 cc's of Pedialyte in her NG tube (feeding tube that goes in her nose, down her throat, and into her stomach). They are watching for reactions to that dose of Pedialyte for four hours. If she doesn't have any negative reactions, then they will continue giving her Pedialyte and discuss the possibility of moving her on to breast milk. The doctors want to get away from feeding her through an IV because the fluid which gives her calories may be contributing to her high bilirubin levels. Her bilirubin has been at about 17 for a few days now (1 is ideal, multiple days at 20 or above can be dangerous).
Raina also began producing an appropriate amount of urine again...possibly proving that her veins were just 'dry' yesterday. Her hematocrit levels (percentage of red blood cells in the blood) have been very low (28ish out of 40), meaning that she is losing more blood than she has been getting. When she loses blood, her veins do not have as much volume in them and are described as 'dry'. The nurses today have continuously been giving her blood to try to raise her hematocrit, which could be why her kidneys increased their output. This past hour she has put out 13 cc's of urine.
She also got another oxygen ween today. She is currently at 75% pure oxygen that is being put into each breath from the ventilator (we breath 21% oxygen in typical air). She is also probably going to be weened down to 10 on her nitric oxide. Her lungs are doing so well that one of the nurses had to listen to them two times the other night to make sure that she was hearing their clarity correctly.
Thank God for all of her improvements! He has brought her so far over this past month.
Prayers are continuing for Little Miss Raina that she will keep getting better every day.
Around 5pm our Precious Raina left this earth for a better place.
I hope you all know how much your prayers and support have meant to my family and me.
God Bless You All
Sharon, my tears are added to your own.Raina touched so many hearts.
I will never forget her.
My thoughts are with you and your family.
Sharon, my heart is breaking for you and Raina's family. I have been following her progress through the Caring Bridge website. When I read today's entry, I told my DH and we cried together.
I put her name in the church bulletin last week and the pastor mentioned her during our Cares and Concerns time in the worship service and during the Bible study today.
I am so sorry for your loss and you will continue to be in my prayers.
I am sorry to hear that Raina has gone on to heaven, she touched soo many lives in the short time that she was with us. I have followed her journey through the caring bridges website. What a beautiful little angel she is!! The prayer chain at our church has been praying for her since her birth, I will have them to continue to pray for Nick and Julie and the rest of the family as well. Sorry can not express how I feel for you all.
I know that there are no words that will really comfort you and your family during this time, but you are all still in my prayer.
God bless you and yours.
I am so sorry for your loss. I have no words to comfort you and your family during this time of sorrow. Please know that I am praying for you all that memories will remain in your heart of the short time your little angel was here.
Deepest sympathy for all of your family.
Blessings and hugs....
I am new to the site and have only jusgt read of your tragic loss, my prayers are with you. Ann
My prayers are with all of you. Raina was a true fighter and she had so much love from all of you and obviously her medical staff. Hugs to all. Deanna
Sharon & Family,
So very sorry about your loss of little Raina. It is heartbreaking for all.
So sorry. I pray all of you can feel God's arms wrapped around you. He is there even when it seems all is loss.
You are all in my thoughts and prayers.
I'm so sorry for your loss. She is safe in
the arms of our Lord. May he give you comfort
in this difficult time. Hugs to all, Mayme
Thank you everyone for your kind words and prayers. We put little Raina to rest today. My mother (SharonG) is now on her way back to Florida. She'll probably be posting within the next day or so.
Salijo and Sharon, you have both been in my thoughts and prayers today. I just read the journal entry by Nick this evening and it is very moving. He and Julie have been an inspiration to me as I followed Raina's progress these last few weeks.
We will continue to pray for your family.