Another CF test came back negative...this one was for the less common mutations of the gene.
Also, she'll be IV free tonight for the first time, eating ONLY the breast milk. This is great news!
She's been awake several times when I've been with her the past few days, and a few times, I've opened the door to the incubator and listened to her crying...it's the most beautiful sound ever.
Here are a few of the latest pics.
Nate
139 comments:
First!? Oh my goodness! She is changing and growing so fast! We are continuing to think and pray for you every day, thank you for keeping us updated Nate!!!!
What a beautie.
Good news on the CF test coming back negative!!!!
Oh Tricia & Nathan
Such good news about Gwyneth Rose.
I love the new pictures (well really i love em all) of Gwyneth Rose.
My personal 2 favorites are
the pic where Gwyneth's arm is reaching up & latches onto her Daddys finger and the pics of her tiny feet... they are priceless
Thank You for updating
Prayin' prayin' prayin' for you
The Mighty Three and families
L.I.N.Y.
Hey Nate...great news. After watching her newborn video you just posted, you can really see how much she has changed! Wow! Can't wait to get back down there.
awww she is precious!
Beautiful pictures! She is really developing - what a miracle she is!
She is getting chubby cheeks.....so adorable!!! Enjoy every moment! You will blink and she will be turning 16.
My family is praying for urs Nate!!!
She is SO big!!! My 2 yr old preemie is sitting on my lap looking at the pictures and saying "Baby Gwen - awwww! Cute!" Do we have an arranged marriage here??? :)
Nate, she looks just like you! You can really see it with everything off of her face. She's precious.
Oh my goodness...just look at those cute little chubby baby cheeks!! How wonderful that the tests keep coming back so good...and no IV!! Wow! :) Thank you for sharing such great news and pics!
She TOTALLY looks like you! I'm so glad she's doing well.
What wonderful photos you just posted! Gwyneth looks just like you....except maybe a little younger LOL. I'm pleased Gwyneth is doing well and its great to hear Tricia is now active on the tx list.
Those are the yummiest cheeks! She is going to love having real milk! I'm so happy for everything that has transpired the past few days. I can't wait to see some family pictures one day real soon.
Always praying.
Haven't commented before, but have been "lurking" for several weeks. Wanted you to know that I've said a special prayer for your family as Tricia is being added to transplant list. God is awesome and it's refreshing to see you guys put total faith in HIM! Thank you for being so transparent and sharing your experience with others...God is using you guys...
In Christ,
from KY
precious girl , it's a wonderful gift!
I just want to pinch those chubby little cheeks! She's completely beautiful.
Anna Marie
Wilmington, NC
What cute little toe-toes! And, I think she is perfecting a Nate Face in the second picture--not to be outdone by her parents! Her hair is also absolutely gorgeous.
she's beautiful!
This is my first comment, besides a song vote, she is BEAUTIFUL!!! She looks so much like her daddy! The seconf picture especially. Way to go on the IV free news. Your family is such inspiration to us all. Im thinking of you all often.
She is her father's daughter!
I'm so amazed at how much her looks have changed! So glad to hear the good news just keep right on comin'!
I like the "oh no! light!" face. Glad to here the good news on the CF test! No IV is such a huge step! Congrats and I hope it stays that way!
In the 2nd picture I think baby Gwyneth looks alot like her proud papa. Praying for your sweet girls- a new set of lungs, and a quick recovery.
God Bless
The Lampkins
Wow!! She is looking so good! We're still praying for her. Well, actually all of you.
Sonia
How sweet are those pics. I know how nice it will be for her not to have the iv.
She is adorable. I cant believe how much she has changed! I think she looks like both of you but I can definitely see her Mommy! She is doing great. Praying for all of you. Kristin
Absolutely beautiful! She looks so grown up compared to the newborn pics. The fuzzy hair makes me laugh... my mother told me I didn't have any hair to speak of for months-- and I wasn't even a preemie!
It is amazing to see how quickly she is growing. What a beautiful little girl!
Still praying for all three of you.
wow! She looks just like you in the picture where you can see her whole face.
You do love her little feetsies don't you!!! I love her little fingers!! Just beautiful examples of our creator doing his finest work!
It's nice to see a little chubb on those cheeks :-) What a beauty!!! Congrats on all the progress.
Wow he is changing and growing and in one photo I think she looks like Nate! :)
omigosh Nate, she looks just like you!! (Little girls always look just like their daddies...mine was no exception, either!) That's great news about going off the IV...does this mean they'll bump up the amount of breast milk she's getting? Also, incredible news about the CF test. It must be nice to have one less thing to worry about!
another wonderful milestone for her. congrats on the test results!
take care!
How Great those photos are! Miss Molly said Gwyneth looks just like you nate. I told her to not worry, as she gets older she will grow to look more like her mother. ( just kidding) What a miracle she truely is.
Keeping the prayers pouring out from here.
Oh my goodness she just gets prettier every day!
Glad for the good update. Thanks for posting new pics. She looks wonderful! God is good.
Mary
Florida
She's beautiful!
Are those chubby cheeks?
Glad to hear Gwyneth is doing so well! Such a relief with the other CF test! Gosh, she looks a lot like you, Nathan! Def good-looking! :-)
Love the pictures as always!
Marissa :-)
WOW she sure is growing and changing. Praise the LORD!! Thank you for sharing all that you do.
Fran
Beautiful pictures as always, Nate! Thanks for sharing with us!
Nate, she is looking so much like you! Great news on the negative CF test and the graduating from IV!
What a little princess!!! She looks so much like her dad in the 3rd picture (not saying you look like a princess too...LOL)
Congrats about the CF test coming back negative.
Beautiful sweet baby girl! growing like a weed! :)jen in al
She's grown so much. My husband saw me checking out your blog, so I went back to show him the pics from when she first arrived. Man, it's amazing to watch. Thank you for sharing your story. My family and I wish all the best for you and yours. What a journey! (What an understatement!)
She is so precious and WOW does she look like you!
She is so precious and WOW does she look like you!
She´s so beautiful and you Nathan have a mini me Am I wrong? Now she has chubby cheeks so cute! :o) Way to go Baby Rose !
look at those chimpmunk cheeks. i want to pinch them :) spittin image of her daddy. i wish us mommy's had something to do with our little ones.
yall are an amazing family . i'm so glad you are giving us this opportunity to follow the journey.
She's gorgeous!!! It's wonderful to hear that Gwyneth is doing so well; God bless you, little one!!
Wow-great news! She is definitely her daddy's daughter! Wow a little Nathanette! Just precious.
Kim
Wow... so much good news to read here... the listed and activated status, how well Gwyneth is doing, and seeing your videos brought me to tears! It strengthens my faith to believe Him more, too! God has made you a gifted spokesman for Him and your faith and confidence in Him is amazing. I pray He will continue to sustain you all.
My 27 week preemie is 7 now. I often think how God was holding her all the times we couldn't in that NICU. She has a dear heart for Him and writes poems about Him almost daily. May I share one? "Lord, I know you're with me where ever I go! In the dark you show me a light! When I have something really hard to do, I know I'm not alone, I'm with you! When I'm afraid, and I don't know what to do - I know I can always run to you! When I go to a hard place, I know I can be with you, look at you with my very own face. So that's why I know I'm with you Lord, because you guard me like a shield and a sword!"
Continuing to pray for you all and be encouraged by your faith.
Blessings from Wheaton, IL
Oh my goodnes she looks just like her Daddy!!! So absolutely adorable!!!!!
I'd been wondering if she cried. (I know that may sound a bit on the dumb side, but with preemies, I just don't know.)
I'm sure it is is a wonderful sound.
She's beautiful.
Rebecca
Oh My Goodness Nate. She looks so much like you!!
IV free!? WOW! THAT IS HUGE!!! CONGRATULATIONS!! She is (almost) wireless!! :) YEAHHH! (Much easier to hold that way :) )
Keepin you raised up in NE!!
Nurse Candice and Co.
WOW. She's changing so much!!! I'm so glad that you have this opportunity for this joy. Its the joy that swells your heart to where it hurts, amazing.
beautiful :)
From looking at the picture of her grandpa, I actually think she looks quite a bit like him.
Is it possible that her little cheeks are filling out? Oh my goodness! So precious.
Wow! It's so wonderful to see her full face. Her growth and development is obvious. She is going to be a very strong person. I believe all NICU babies are. When my DD was 18 mo she saw a tv show I had on where a NICU nurse was treating a newborn and she cringed and gave a face full of anxiety. Then when the baby was held by her mommy on the show she looked satisfied. I think she had some feeling deep inside her from being poked in the NICU, but she bonded so closely to her dad and me because we visited and spoke to her and sang to her wating for her to grow. Gwyneth is getting so much love from you guys.
YEAH GOD!!! Grow Baby, Grow!!! Breath Baby Breath!!! YEAHHHH!!!
thanks for the good news...'needed it today.
still praying for ALL
thank you to the medical staff for helping God get Nate's girls this far! You'll ROCK!
I have a question that I haven't seen the answer to through the links; although you have referenced this. Do the medical personal involved give you any idea where on the "list" Tricia is? No pressure to answer; but I'm praying she is near the top.
So much good news! Praise God for all of Gwyneth's accomplishments! She does look like her Daddy! She is an amazing little girl! We are continually praying for all 3 of you - for health & strength in the days ahead! Praise God for Tricia's "active" status! I love checking in with your family through the blog - thank you for giving us all a small glimpse into your world and for being such a blessing to all who follow your story!
Wow. I was SO struck by how much Gwyneth looks like you Nate. So special. God is absolutely amazing!
I am beyond happy that Gwnyneth does not have that awful disease! Bless her for not having to suffer like her poor mama is now. I hope she continues to grow and gain strength each day. She has a cute little head of hair already! How much does she weigh now? I think she looks like you, Nate! I know you mentioned that you like to hear her cry, but I truly hope she doesn't have to cry too much these days. I hope she will smile more!
~Julia D'mato
Wash. D.C.
She is amazing and beautiful. Such great news!
OMG! Gwyneth is too cute, with all that blonde hair! She seems to be getting bigger each day! So, Tricia is able to pump breastmilk for her? That is wonderful! Breastmilk is so easily digested for babies, much more so than formula so that is awesome for little Gwyneth! I was wondering why they didn't let you in to view her birth (c section)? Or was it that you preferred not to? I only ask because my husband was allowed to watch both my C sections.
Well, many blessings on your yellow rose.(golden haired one!)
Beautiful, just like her mother! Still praying,
krista
Does Tricia get to hold her baby yet? And, can Tricia speak with that tube in her neck? Will she have to remain in hospital now until the transplant since she is activated on the transplant list? Or will they allow her to go home and wait? Or is it an advantage for her over others on the list that she is already in the hospital and ready? I hope it all goes well so she can go home soon and enjoy her new babygirl!
Rebekkah
Alexandria,VA
I was just checking my comment. I am already praying for you and for the commenter who needs to understand God intimately. I was once there myself. I hope you know that Tricia and yourself have much support and prayer. Your story is a blessing and inspiration to so many.
Well o.k.... baby picture of Nate as a preemie!!!! So glad that both of the girls are doing well. We are praying for you all.
Warmly from "S. Jersey"
I can't believe how a head that little can have that much hair - it's goregeous!
Little Gwyneth has changed so much! IMO, she looks a LOT like her daddy! Some side by side parent pics would be a fun post to see (hint hint).
Very much hoping that the sickies steer clear of you and yours!
LOVE THE GOLDEN HAIRED ANGEL BABY!
what blonde head of hair she has! Precious baby girl! how big is she now?
Can Gwneth eat from bottle yet? Do you get to feed her now? And, can she be brought up to Trisha's room to be held?
I was wondering if Tricia is alert and awake enough to know how Gwyneth is doing? Does she know she had a baby yet and does she ask about her baby at all?
She looks wonderful!! Clearly, the breast milk is doing wonders. Her face has filled out, and she is noticeably bigger.
What a treat to have a few less lines to worry about when you hold her.
Oh Wow! She really looks like her daddy doesn't she?! It's amazing! Glad she continues to do well!
Sammie
www.n8andnoah.com
Oh, she's beautiful! I'm so thankful she's doing so well. :) Thanks for posting the new pictures.
She looks just like you! What a doll. I am praying for you all!
From Helena Alabama
What a CHUNKAMONK!!!!! LOVE IT! I was so relieved to hear another test came back negative!
i have been reading this blog everyday for several weeks. thank you for sharing your story. you have so much to be thankful for and i appreciate seeing that in your daily blogs. you're positive attitude is inspirational. thanks for being transparent and giving praise where it is due. we pray for you every time we read the blog.
yay gwen!! You GROW girl!
@ anonymous above: Go back several posts to catch up. The post before this one shows has two videos. In the first one is a picture of Nate, Tricia and Gwyneth together...well, Gwyneth in her little "cubbie". Just read back as many posts as you can so you can catch up. Both girls are AMAZING and absolutely have God as their Great Physician!
She is growing so much...it's amazing. I had a preemie also, but Gwyneth has really grown these past weeks! She is beautiful. I continue to pray for all of you!
Catherine Midgett Christiansen
Is tricia aware of the baby? Can Tricia hear when you talk to her? I hope she knows how cute her baby girl is ! BLondie head! cutie!
Wow. Cannot get over all the "lloks like Nate" comments. I honestly think she looks like Tricia. Actually, I think she looks like Gwyneth! ;)
For all those asking (good) questions...Nate has answered nearly all of them and those answers can be found in his posts. Go to the ones that say "Q & A"!!!
My preemie was born at 29 weeks because I went into premature labor. I remember being so scared then that she wouldnt make it. But the NICU team rallied around her and made her well. She does have cerebral palsy and loss of hearing in one ear from one of the meds they gave her but she even though she cant walk well, or speak that clearly she is here with us. She is now 5 yrs old. Hope that your preemie does as well too and that you can bring her home soon.
I can't tell you how much I appreciate you telling your story. Though I have never been through what you've been through, I can honestly tell you there are times in my life I don't know which way to turn and your story has shown me the only way to turn is to God. Thank you and I will continue to pray for your strength as well as your girls.
I too had preemies. 28wk old triplets! They are now 2 yr olds and wreaking havoc around the house! They have vision problems (wear thick glasses!) and some developmental delays due to the prematurity but they are otherwise healthy. They don't speak that well yet, but get speech therapy 3x week. I hope your gwen gets to growing fast and comes home to you soon!
You are so lucky you can be with your baby girl each day! My husband and I had to go back to work full time after our preemie son was born, in order to pay for all the medical and living expenses. Sadly, we were only able to visit on weekends (2 hours away) and it just broke my heart each day. I remember crying myself to sleep each night because I couldnt be there to hold him each day. Cherish those moments and know you are fortunate. Not all NICU families have this wonderful opportunity. Bless your precious little girl as she grows and heals.
Meighan Miller
Seattle,WA
WOW, i noticed in the picture that gwneth has no oxygen or vent or cpap! way to go gwen!!! shes breathing on her own now?????wow!!!
Nate, she looks just like you in the second pic! How proud you must be. Thanks so much for the updates. Prayers from Florida
LOVE the feet pictures! I admit, I too, have a fettish for baby feet. I still bite playfully on my 22-month old's feet. . .LOVE THEM!
When I saw Gwyneth's picture with one eye open, I had to smile so big. It's like looking into the eye of an angel! Thank you so much for sharing.
Praying for many miracles....
Nate- she looks just like you? I don't know you or Tricia and usually I have no idea if a baby has her momma's nose or her daddy's ears...
but when I saw the second picture posted of precious Gwyneth... I almost mistook her for YOU!!!
Blessings and praises.
it is amazing how much gwyneth has grown and changed, especially after being reminded of her newborn photos in the video on the last post. she is a beauty! i'm so glad you've been able to listen to her lately...precious! i have taken my girl's cries so for granted.
still praying for you...i waved and said "hi" to the three of you while i passed duke on 85 just a little while ago. (you probably couldn't hear me :))
p.s. the video for that crisis pregnancy place was great! i think you were very honest and real and very sensitive to your audience at the same time. great job!
WOW I can really see her change with these pictures. Look at those cheeks !!! Yeah for Gwyneth !!
She is so tiny, so beautiful, so perfect!
Sarah
She is beautiful she looks just like you!
Please don't tell my kids this...but your daughter may be the cutest baby I have ever seen. :)
Wow! I can really see how she is growing and changing. I am so glad you have a good update to share. I love the new pictures. She is a beauty...
My friend Brian led me last night to your blog. I'm a NICU nurse in Florida and I'm amazed at Gwyneth's progress. God is truly the Great Physician and is going to take care of both Tricia and Gwyneth!! I will be praying for all of you but just wanted you to know how awesome I think it is that God is so using your blog to reach so many people!! :) It will take me awhile to catch up on all your blogs but I am so enjoying them!!! Thanks for your updates and may God continue to grant you strength and good health!! :)
Do you need more breastmilk donated? I know its very VERY expensive to buy donated breastmilk for your baby, because my friend had to do that for her preemie. I am willing along with several moms in my moms group to donate extra breastmilk to baby Gwyneth. Let us know how we can arrange that. We currently donate at a local breastmilk bank now. All the milk is screened so you can be assured of safety. We can designate Gwyneth as a recipient and they will pack in dry ice for her NICU. I know the money must be tight for you since you aren't working now and I figure the breastmilk is one less expense for you to take on now.
Oh my goodness, Gwyneth really favors Daddy! What a precious sweetheart!
Rene
Does Tricia have to remain in the hospital until a new set of lungs is found ? I wasn't sure if she could go home once she gets a bit stronger. Cause I know sometimes the waiting time for transplant can be months or years and wasn't sure if she would have to wait it out in the hospital for that whole time or not. Please advise.
If anons are following comments, many of your ?s have already been answered, but to give Nate a break from repeating:
1) Tricia will remain in the hospital until she is transplanted. She's on a vent. She can't go home with a vent. She spends a few hours a day off the vent, but is still hooked up to oxygen 24/7. Vents require a high level of care and also put a patient at risk for infection.
2) Gwyneth is a micro-preemie also requiring a very high level of care 24/7. She can't be removed from her room, let alone her floor, and will most likely be there for a few more months.
3) Nate was not at the c-section because is was an emergent situation. Tricia was only supposed to be vented, but she was unstable and thus they did an emergency section with the hopes of saving the baby. Tricia, like the awesome fighter she is, survived the procedure. She was totally unaware of it all until she came out of a coma 9 days after Gwyn was born.
4) The milk being used is donated and covered by insurance. Tricia can't pump for a myriad of reasons. The "biggest" being many medications she is on are not safe for Gwyn. Post-transplant that list of meds will be even greater.
5) Duke, and most hospitals, do not allow direct donation of milk, even from family members. Gywneth will continue to receive donated milk in the hospital as long as doctors believe she is priority. At this time she receives preemie milk and her 'micro' status keeps her at the top of the priority list.
6) Tricia sees the baby when she can physically handle the trip down to Gwyn's floor. Because of the extensive care Tricia needs, she has to travel with several medical personnel and it requires a good bit of maneuvering. When she has her new lungs and is recovered she'll be able to hip-hop on down there whenever she wants.
That baby girl looks like her Dad!
Wow! She's a Mini-Me of you in looks Nate!!! I'm sure in time her Mummy's look will take over through heeheee! ;o) Just kidding, you know that ;o)
She is simply GORGEOUS xxxxxx
I am so excited about the activation and the negative CF results. I cannot get over how big Gwyneth's cheeks are - it's adorable!
GREAT JOB MEGAN!
Ok, now I am curious. What is "preemie milk?"
I thought they had vented Tricia first, AND then took her back for 2nd operation to do the c section. That stinks that Nate was not allowed in for the c section. (I assumed he was there for it.) My husband was allowed in for mine, and it was an emergency as well, following a car accident. I pray for a non emergency birth for Tricia the next time. (for Gwyn's brother or sister!)
~Alice Walton
Birmingham,AL
her face is sure getting older looking , what a beautiful baby !!
What Megan said was:
5) Duke, and most hospitals, do not allow direct donation of milk, even from family members. Gywneth will continue to receive donated milk in the hospital as long as doctors believe she is priority. At this time she receives preemie milk and her 'micro' status keeps her at the top of the priority list.
She said DIRECT DONATION OF MILK. And she also said MOST do not allow it. Seeing that Megan is Tricia's sister I am quite sure she has a pretty good grasp of what is or is not factual about Tricia's case.
She is just adorable and without all the tape and stuff, she looks just like you Nate, but the soft version!!
I am praying for both of your girls and for you. You 3 have come a long ways, but there is still a ways to go and you have my daily prayers for this.
Love, Laurie in Ca.
Great news! She is a little fighter, just like Momma & Daddy!! Right now, I think she looks like Daddy!! Love & Prayers!
^JUST ^j^ BELIEVE^
She is so beautiful! In that 2nd picture, I think she looks just like Tricia. Gorgeous!
Wow. She really does look like her dad! How precious!
Kat
She is more beautiful everyday.
kelseyrn-
Duke does NOT allow DIRECT donation of milk to specific patients and they do use a milk bank. After speaking to a few nicu nurse friends, I've heard this is consistent in several hospitals in my area too. I'm breastfeeding and happen to have a good deal of knowledge on the topic. I have had several conversations with both Gwyneth's primary doctor, several nurses and Tricia about this issue. DUKE only does donations from a bank and those donations can not be designated to a specific patient. Primarily because of HIPPA and privacy laws. They DO NOT allow any kind of direct donation, not even via a milk bank and even from immediate family members. (Again, this happens to be a topic I'm pretty well versed in, particularly in how it relates to my sister, niece and Duke policy.)
Please read my comment carefully. TRICIA is NOT going home on her vent. There are multiple issues. I didn't say all vent patients are stuck in the hospital. TRICIA will be in the hospital until she gets her lungs and is vent free.
Tricia's heightened risk of infection and need for very specific vent care limits her. I'm not sure if you're new to the blog, but Nate discussed the specific vent she is on. It is brand new to Duke, from Europe, and at 'press time' on that post, she was the first patient to ever use it. Thus, the "high level of care" she needs as it relates to her Duke hospitalization.
To the other anon ?:
Tricia's surgery on 1/8 was supposed to only set her up on her vent. However, she was very unstable and the doctors decided it was best to take the baby while they had the situation controlled in an operating room with all her team (OB/NICU/PULM) on hand, as opposed to the ICU where a potential "crash" situation would have developed.
Yes, I happen to be her sister. I'm also happen to be a bit "in the know" on all things Gwyn and Tricia. I also generally tend to be pretty accurate. ;)
Ok. Nate, I will now get off your toes. Carry on, brotha!
Eh hmm. You go girl! And our family is in constant prayer for your family. ALL of you. We realize Tricia's family reaches far beyond Nate and Gwyneth and far beyond biology. God Bless all of you and God give you strength to continue to be so incredibly patient with everyone.
A gorgeous little girl! Wow! I can't imagine how much in love with her you must be because I am and I am just a follower of your blog! Continued prayers for all of you....
Her hair is changing colors so fast! Looks more like daddy's now.
I can't believe how much she's changed, and those cheeks are adorable! Continuing to pray for you all!
I haven't read the other comments, am I the first to say she looks like her daddy?
It's wonderful to see her grow! And amazing news about Tricia getting on the list.
Audrey (Cf Uk)
Preemie milk?
Breast milk composition differs when a baby is born pre-term. Preemie milk has that rich "first milk" content for longer than the milk of a woman who gives birth to a full-term baby.
There are woman who deliver pre-term and pump in order to provide milk for their own babies. They often have an oversupply and are able to help other preemies with their milk. It's an awesome gift and due to my own experience, I know that pumping takes a good deal of persistence and effort.
She looks so much like her Daddy. First time I have seen her full face.....BEAUTIFUL!
WOW! Look at those checks! She is getting bigger! I love the pics, Nate. Thanks for sharing them.
She really looks like you! :)
She is absolutely precious! I have been coming to your blog for sometime but have never commented. But I just had to comment and tell you how beautiful your little one is (although i am SURE you know!).
Y'all are in my prayers daily!
aww! She is really starting to look pretty big here! I think it's those pinch-able cheeks in these pictures!
Praise the Lord for another negative CF test!
As of now, I think she looks ALOT like you Nate. :) She's beautiful and an amazing reminder of the miracles God still performs..even today.
That little girl is just an angel & holy cow does she ever look like her daddy!!
WTG on all the great news.
Thank You for sharing
Breastmilk is gooooood stuff. Praise the Lord you are so close to a bank! I look forward to hearing of her continued weight gain and better health.
I've been away for a few days, and I've come back to a lot of new posts. Wow! Glad to see that your girls are doing well.
These pictures are so beautiful. She's such an awesome little baby. Continued prayers!
She is Filling out so pretty. Our God is a Great God!! Still praying for all!!
That second pic is the most I've seen her face! I've never met you in person and maybe it's just me but I think she really resembles you (Nate) in that pic.
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