Thursday, July 12, 2012

GO DRAKE GO, GO DRAKE GO!

As I read everyone's comments to this blog, I see an amazing amount of support towards our son and daughter. Annie and I do not have any other children, these two miracles are what we have been desperately seeking for the past 10 years of our marriage. Seeing and hearing of all the support you all have for our little ones could not make any parent more proud; what an impact these two lives have already made in this world in the short 19 days they have been with us.

As you can imagine, it takes all of my will to write these updates each day. At first I wrote for simple therapeutic reasoning coupled with the ability to keep my caring family informed of their progression. As I began to write more and more, I realized how much they inspire my devotion and how important it is to have a relentless drive to beat all odds. To that, I take great pride in being the father of two of the most inspiring individuals and I am thankful to experience first hand such great determination in the fight for life.

Drake has still not yet resumed kidney function, but he is still determined to keep pushing as long and hard as his little body will allow. I had a long conversation with the infectious disease doctor this morning...boy do they get here early, it is probably so they can reduce the potential of getting cornered by inquisitive and determined parents like myself. I stated my concern to the fact that he is on so many antibiotics; they are majorly impacting his kidneys and potentially keeping them from kicking back on. He said the severity of the serratia strand infection is the culprit of shutting them down, but agreed that the antibiotics could be keeping them from resuming activity. He thinks we are at a point in treatment that we can temporarily stop two of them for the time being, to see if it helps take a load off of the kidneys. He was probably going to do that anyway, but it made me feel good to fight for my son who is unable to voice his own concern. I had another lengthy conversation with the neonatologist...I non-confrontationally asked him if we are exhausting all of our options and all of our resources. I began naming all of these kidney specialists (nephrologist) by name throughout Texas, thanks to the research my family has been able to do while I am by the bedside with my children. He is making some calls today :)

Kennedy had a great night. She is such a spunky child...I cannot wait until she is making me chase her around just to keep up with her! Her goal is nutrition and growth.

Please keep hope and prayers for Drake to resume normal bodily functions and for Kennedy's continued good days.

I hope these two miricles of life are as inspiring to you as they are to me. Please share our story with whomever you wish, so others may enjoy their lives as well.

Picture: Kennedy getting new sheets

53 comments:

  1. Go Drake! Keep fighting little buddy! We all believe in you and know you can make it! Just keep hanging on as God puts the doctor in your life to get those kidneys started back up and let your body cleanse itself. We are all praying and rooting for you and know that God has big plans for your life, as in just the first few weeks you have already touched so many lives, your life will touch so many more with your story! We love and are praying for you, keep up the fight! Team Drake all the way!!!

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  2. Lisbeth Van DaalenJuly 12, 2012 at 10:27 AM

    Joy to my ears! It is so wonderful to hear you and Drake are still fighting! I am in awe of your strong spirit and love! We all love you and will continue to pray for those little kidneys!

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  3. Team Drake! I love this post because it truly represents the team effort. Prayer, research, and being a voice for that precious baby boy and his sister. Go Brian Go!! Please give Annie a hug from me.

    Cristi Parsons

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  4. Go Drake Go!! You can do it little buddy! Show the world what God can do!! Continuing to pray for you all!

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  5. We are thinking about you all often. Madeline asks me throughout the days to "check on the babies". We are continuing to hope for their strength & health to improve as well as your strength & courage to remain. Love, Naomi, Tom & Madeline Perkins

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  6. Hey Miss Kennedy, I wanted to write you, too! While I was writing your brother on last night's update, I didn't know your daddy had posted a new one so I checked it out and there you were sitting up!!!!! Oh my soul and body! What a big girl you are! I am so proud of you. In last night's picture, you looked like you had grown a foot. Your daddy thought you were covering your eyes because of the bright light, but I know better. You are one smart cookie and were trying to play "Peek a boo" with him. Maybe he'll catch on soon. You are a cutie, sweet girl. Did you know that your mother has had the name, "Kennedy" picked out for a long time in case she had a baby girl? How neat is that? I have lots of ribbons and little headbands at my house, and as soon as your mommy and daddy say it's okay, I'm going to start making some for you.......not that you need them because you are a little doll just like your mother. Now you keep drinking your milk and growing and maybe the next time you cover your eyes, your sweet daddy will know you want to play, "Peek a boo." I am praying for you, missy and so thankful that you are doing much better!!! Love, Aunt Becky

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  7. Brian - I have been told that nobody knows better what my kids need than I do. For Drake and Kennedy, you and Annie are the ones. Those doctors are experts in medicine but you are the experts on Drake and Kennedy. When your guts tells you something about them, you should listen to it. I'm so glad you're seeking out additional support from area specialists and looking at the possibility of suspending the antibiotics to give his kidneys a better shot. It could be just the thing he needs.

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  8. Joyfully rejoicing over this promising update! Brian I can not tell you how much your words mean to us your readers. It is an honor to read your thoughts each day. We are on this journey with you! The Lord is using your honest, loving, and eloquent words to inspire so many! Your family never leaves our thoughts and prayers! We love you, Annie, and your tiny little miracles! May our Lord continue to pour His blessings out on your amazing family!

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  9. Drake, keep fighting! You have and WILL touch so many lives. God has a plan for you! You will impact so many people throughout your life. I can't wait to see all your future accomplishments!

    Erin in New Braunfles

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  10. The will and determination of these two little peanuts is absolutely amazing and a direct reflection of you and Annie! You are going to have to keep up with your workout routine to keep up with them! Lots of love and prayers from Oregon and Texas!

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  11. I don't know you but I love, love, LOVE your family! You guys are all such an inspiration to me!! Thank you for your updates. I had twin girls last year so I know how hard it is to do anything in the beginning. I check often for news of Drake's condition and Kennedy's continued wellness.

    I am thrilled and in complete awe to hear about Drake's amazing strength. What a little fighter you are, Drake! I'm so very proud of you!!! And Kennedy, sounds like you're healing and growing at a wonderful pace! So proud of you, too!

    Keep hanging in there Gilstrap family! You guys are amazing!! I will continue to pray for you every time I think about you, which is very often!

    Jennifer (Dallas)

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  12. Brian and Annie, what awesome parents you are. I appreciate your being so proactive in asking the doctors questions. As wonderful as they have been, we don't want to leave any stone unturned. Way to go, parents!!! Brian, your updates are so special, and I know I speak for everyone in saying, "Thank you!" Also, in the midst of such difficulty, I am amazed at the incredible way you express your's and Annie's hearts. I can sense God's hand and strength on you as you write. I continue to pray for the two of you and your little ones. May God continue to be your source of strength and the Rock you cling to.

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  13. What great news! We are so happy to hear the fight Drake and Kennedy have in them. They are absolutely amazing babies and have touched so many lives. Prayers continue daily for strength for everyone!

    Drake and Kennedy...so many people love you and are lifting you up in prayer. You're going to have a long line of people wanting hugs when you are out of the hospital!! Go Team Drake and Kennedy!!!

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  14. I am a friend of "Auntie Teresa's" and wanted to share a special prayer from one of my friends.

    Lord right now your Saint Drake needs You! He is a mighty fighter and is in need of support! Strengthen him every moment so that he may grow big and strong and share Your name with many!! Surround Mommy and Daddy with peace knowing that You are the mighty healer and already knew Drake and his needs before anyone. Let them REST in You and let them feel the comfort of Your arms around them. Send them the perfect people/doctors/nurses/specialists and friends to aid them and Drake in this process! Thanks for loving us Jesus.... Amen

    Your family is on my heart all day and night. Love, Jen McIntosh

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  15. Love to hear that he is still fighting strong!! I also love the fact your little girl is hanging in there as well.

    Are they letting you hold Drake at all? I know a mommmy's touch does so much for them.

    If they let you try to do kangroo care where you hold him in your shirt so you are skin to skin. It helps not only him but lifts your spirits as well. Even if its only for a few minutes. Of course you can ask to do with Kennedy as well. And if you're pumping it helps a lot with the milk supply.

    Praying for you.

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  16. Amazing! I am in awe of your spirit! I think we all know where Drake gets his "keep fighting" attitude! I am in awe of your whole family. What a blessing you all are to so many people near and far! We will keep praying without cease! God bless you all!

    Kim & Josh

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  17. We are friends of the Claborns who have shared your story on facebook. We know all to well that Miracles happen in the NICU. We have a 29 weeker. I believe God walks the NICU and is with all the little lives, parents, nurses, doctors and staff that work with these little Miracles. We are praying and thinking of y'all. Don't give up. They are fighters! Stay positive and take joy in all the little achievements they will have. Know that you have alot of people praying for you. Take comfort that God is with you every step of the way.

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  18. I don't know you, but we have some common friends. My whole prayer group is praying for you all, especially Drake. Don't let those doctors get you down when they go all doom and gloom. My nephew wasn't supposed to make it either when he was born. Then he was supposed to have asthma, motor problems, and brain damage. He's two now and completely healthy with none of those issues, and he's even a little chunky for his age. It's all about prayer, and you all are certainly well covered there. I know it must be hard to post updates, but those of us praying want to know, so thanks for keeping up with that.

    You the man, Drake! Keep fighting! You've got a sister to annoy for the next 18 years! And then there's all those friends she'll have...date-able friends...! In the meantime, you know what's really fun? Wait til mom and dad are dressed up for date night. As a favor to the baby-sitter, they'll probably change your diaper right before they go. Wait until the diaper is off, then let it flow! Any self-respecting infant can shoot at least 18 inches, and the look on their faces will be so worth it! You should start practicing that now. :)

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  19. I have frequently checked the blog throughout the morning and am always eager to see these tiny miracles of God and their progress. Thank you for keeping up with the posts and know we are all praying for all of you. You have inspired so many with this blog. I have a friend who has 12 year old twin girls, and they are fiesty,strong and healthy, but started their journey almost identical to Drake and Kennedy at 24 weeks. He heals! Your family is a blessing to so many, thank you for opening up and sharing your tiniest and most precious gifts. Bless you all!
    Melissa (prayer warrior from McKinney)

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  20. Brian, I am so sorry that you and Annie are having to go through such terrible pain at what should be the happiest time of your life. I'm glad to see that both of your little ones are such fighters, just like their dad. I know you must feel helpless right now, but don't underestimate the power of your presence, love and positive attidude. You are inspired by your little fighters, but they too are inspired by your love. Keep fighting for them! All of you are in my thoughts and prayers. If you need anything at all, please don't hesitate to ask. 817-524-5536.

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  21. Dear little Drake, Everyone wants you to go pee pee. In Jesus name.....we (all the prayer warriors) come into agreement that today is the day that your kidneys start to function.
    Kennedy, Keep up the good work
    Brian and Annie, Keep on standing....Faith is the substance of things hoped for and the evidence of things not seen.Hebrews11:1
    Faith can make a tadpole slap a whale (hope you get a giggle out of that) One more thing....God inhabits PRAISE.
    Love you! Distant cousin and prayer warrior Debbie from Gladewater

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  22. I am praying for them every minute of the day and I am so blessed by reading the blog....Drake and Kennedy already exemplify a strength of character we can all be proud of.

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  23. Brian, you and Annie are truly inspirational as well as Miss Kennedy and Mr Drake. Yours is a story of strength, faith and endurance. Keep being a champion for your children and we will continue you support you all. Angie just sent me the most gorgeous photo of you holding Kennedy and it brought tears to my eyes! Amazing day! Relish the victories and those yet to come!

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  24. Still praying continuously for your precious son and daughter...we ask the Lord to make a way where there seems to be none....thank you for sharing your story with us all...in Jesus name and for His glory! Amen....Max meadows Virginia

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  25. From the parent of one NICU Warrior to another,
    You and your sweet family are in my thoughts and prayers. I have been thinking about Drake and Kennedy since I was told of their birth, and rooting for each of them! God is absolutely present in the NICU, and his angels are in the form of NICU nurses! I second the kangaroo care mention, as soon as the little sweeties are able, it's the best feeling in the world, (for parents and babies!) and daddies can do it too! Big hugs to you all!
    -a friend of a friend

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  26. What an amazing update that shows the power of hope and prayer and a parents never ending love for their children. I am so happy your family has been doing research to fight for Drake.

    Sydney was so happy to hear this news. She has been praying for Drake and Kennedy every night along with me.

    Give Annie a big hug from us and tell her we love her so much.

    Yvonne and Sydney

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  27. Thank you Father for continuing to watch over your precious babies Drake and Kennedy. Lifting up all of you in prayers.

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  28. Keep fighting Drake!!! Your spirit and strength are inspiring! We continue to pray for you and your sister and for your parents too.
    Chris and Holly Burke

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  29. I too like many readers above do not know you all personally, but am touched by your blog updates. As parents we all want the same for our blessed little ones! Keep up your amazing strength and yes question, question, questions for the doctors .... I agree that a parent's intuition is always the best! GO Team Drake and Team Kennedy from a new friend in Dallas :) Please lord bless these amazing parents and babies. Place your healing hands on both these inspiring parents and precious children!!

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  30. I have been trying for days to send a message but am not computer literate enough to accomplish . I am trying again. I am thankful for you update everyday and I talk to Aunt June every day or two. You and Annie and the babies are in our prayers and thoughts. Be strong Brian and Annie and keep fighting Drake and Kennedy. We will keep up the prayers for all of you.

    Sid and Peggy

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  31. I don't know you personally, but found your blog through a common friend. Oh, how I empathize with your experience. Our daughter is 2 and 1/2 now, but she was born at 25 weeks, weighing 1# 12 oz. Do you happen to be at Medical City Dallas? The rooms look familiar. The nurses and doctors there were spectacular. I remember finding much encouragement and support in reading others' stories that were similar to my own. If you would like, you can read about Sophie's story at our website: http://www.caringbridge.org/visit/sophielungwitz/journal/14. This link takes you to the first post, and you can read forward from there as you like. I will be praying for your sweet babies. What miracles they are already!!! A verse we held close to us during Sophie's stay in the NICU was Exodus 14:!4 "The Lord will fight for you, you need only to be still." If you need any support at all or have questions, feel free to email me: hollyryanlungwitz@hotmail.com.

    One last thing, I would encourage you to find a nurse you really like (one for AM, one for PM) and request that they be your primary nurse. This means that, whenever they are working, they will be put with your babies. This provides a lot of consistency in care, and the nurses are better attuned to your baby's specific needs if they spend a lot of time caring for them.

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  32. I am a friend of Rachel Felkey's, and she shared your blog on Facebook. I wanted to let you know that our family is praying for Kennedy and Drake, and also that my husband and I donated blood today in their honor. I have never managed to successfully complete a blood donation, but today I just kept thinking about Drake and what a fighter he is. I knew that if he could survive all he's been through, I could stay strong for 20 minutes with a little needle in my arm. I'm proud to say that I finally did it! We are in Virginia, so I know our donations will not help your little ones directly, but I wanted to let you know that your son and daughter inspired us to help save lives. We are continuing to keep all of you in our thoughts and prayers.

    Susan, Charlottesville, VA

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  33. My sister, Holly, shared your story and blog with me and I have been in continual prayer for Drake & Kennedy, you and Annie. Drake...we know you can do this - keep fighting sweet baby boy. Know there are so many prayers going up for you. Kennedy what a sweet and feisty girl you are - you keep up the good work in your growth and strenght! Dad and mom what an inspiration you are. Cannot imagine how difficult it is for you to take time to keep us all updated and uplifted as well. I too have shared your story and blog with my friends on Facebook and asked for prayers and friends (some whom I have never met in person yet) have shared and asked for prayers. Prayers for you all are being lifted from every corner of our world. Go Team Drake & Team Kennedy - you babies are loved by all!! God Bless! Sandra

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  34. I, like so many others, am continuously praying for your twins with special prayer requests for Drake's kidneys to start functioning. I agree with Holly (above) that requesting a primary care nurse is a great idea. I'm so glad you advocated for Drake today and addressed your concerns to the doctor. Sometimes, we feel so helpless in the NICU and it's hard to parent a tiny micro-preemie who depends on machines and doctors and the grace of God to live. I posted once before on here. I had twins born at 23 wks 5 days weighing 1 lb. 2 oz. and 1 lb. 8 oz. They are now active, healthy 2 year olds. I am praying for the same outcome for your two tiny miracles. Remember that you are the parents and it is your place to be well-informed by the doctors and make important decisions alongside them for your children. My heart aches for you all so much. Praying for a miracle.

    Michelle - www.camdyncade.blogspot.com

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  35. Go team Gilstrap! You 4 DO inspire me to be thankful-- not just for each day, but for every second in it.

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  36. Seeing the babies last night was so overwhelming with joy and hope. Joy to see Kennedy doing so well - stretching out and looking so comfy and content. Hope in seeing Drake doing as well as he is, responding, fighting and having such a will to live. I love you all - my prayers are with you all!

    Kelley

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  37. Oh Brian you can make me laugh! You're sweet comments about Drake and Kennedy are so you. My family and I pray every night for you, Annie and your little ones. My 4 year old son refers to Baby Drake as "Drakie" and it's precious to hear him pray. As he says "we pray that God holds them in his hands and lets them get better".
    Tiffany

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  38. Brian, Annie, Kennedy and Drake. You all are in my constant thoughts and prayers. I am praying extra hard that the Lord uses his healing hands on Drake and makes his kidneys work. Drake, you are a fighter and an inspiration to a lot of people, including me. Keep fighting little buddy!

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  39. I, like many, am just a friend of a friend of a friend, and your blog really touches me. It hurts my heart so much to know that your new little family is having to go through so much emotional and physical pain. I don't know if it helps at all to know that I am praying for all of you daily. For strength, understanding, peace and pee pee! Much love, positive thoughts and prayers.

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  40. C'mon Drake. Fight my man, fight. Lots of people pulling for you and your sis.

    Bill W

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  41. Brian,
    Just read all of your updates on your bundles of joy. I am saddened by the recent news of little Drake but remain hopeful in our Lord and Savior. He is our ultimate physician and I pray that God wraps his healing arms around you, your wife and your sweet babies. I will add your family to our prayer list at church and repost so more prayer warriors can join in your battle. Thinking about you!

    Praying,
    Ginger (Brown) Murchison

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  42. Our family is praying for your little ones!

    Megan

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  43. I am from Dallas and I don't know your family, but I am praying for your babies!! What a blessing they are. I can't even begin to imagine what your family is going through. I will be praying hard for you all!

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  44. Yay Drake! Keep fighting. You have so many people praying for you right now. And Kennedy - sweet little girl, I know it may seem like your brother is getting so much attention, but as you can see you are in our thoughts and prayers too. I pray that as you entered the world together, so too will you leave the hospital together! Holding hands and smiling at your parents. Prayers from VA continue to flow. And I just found out my church back in Des Moines, Iowa has added you to their prayer chain!

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  45. Found your blog from a friend's FB post and am praying for your family. Father God, please be with this precious family as they continue on this trying journey. Wrap them in your loving arms and allow them restful moments. Place your healing hands on sweet Drake and Kennedy. Help Drake's body to fight infection and help his kidneys to start functioning again. You have given these sweet babies the strength of super heroes, allow that strength and determination to help them continue to heal, develop, and grow. We thank you for their lives and pray that them, their family, and their medical staff. Help the medical staff to listen with open minds and hearts as their parents so awesomely advocate for their little ones. In Your Name, Amen

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  46. We're friends of The Bugbees. Praying for God to amazingly heal Drake. Psalm 139:14 - [Drake] is fearfully and wonderfully made. Lord, because you created him, you know exactly how to heal him. We trust in your name! We had our daughter last year at 32 weeks and were at Presby Dallas for about a month. You're in a great facility. I don't think they have a nephrologist on staff, but there is a great one at Medical City that they can consult (my sister had to do this as her newborn had complete kidney failure and had to go on dialysis). Praying, praying, praying!

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  47. I am just a friend of friend who saw this link. I want you to know that I have been in this exact situation with a touch and go bundle of joy x 3. One of which had our main focus just like your sweet little Drake. I am praying for ALL of you and especially Mommy and Daddy. It is so hard to do anything including breath or give the love and attention to your other baby (s) when you have such a sick one. My only hind sight and suggestion I have ever given anyone in this situation is to have NO regrets as you support your little lamb. Sounds like you are doing that with all your research on specialists etc. we were told we couldn't touch our sweet baby by one doc and then almost blamed for not by another. So just continue to talk to Drake and touch when you can (with gloves of course) as much as you can. We can't go back and would have transferred ours now that we look back. You are in a great place and do all that you can. Call other NICU'S in other hospitals if you feel you need more referrals or answers etc. It will be the toughest marathon you have ever or ever will run!! God Bless you all and trasure every moment! Prayers and support for all four of you!

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  48. I am another friend of a friend, but I have a special heart for preemies as my older son was born at 24 weeks and 1lb 9oz. I cannot imagine going down that road with two little ones but I promise that God will work miracles for you! My son just turned 6 and has finished kindergarten, something I never dared to hope for when he was in the NICU.

    I highly recommend this book to walk you through your journey towards the babies' due date, if you need another resource. http://www.amazon.com/What-When-Your-Baby-Premature/dp/0812931092/ref=sr_1_3?s=books&ie=UTF8&qid=1342145136&sr=1-3 It was written by one of our doctors at Texas Childrens and I found it tremendously helpful.

    We will be praying for Drake and Kennedy and for the rest of your family as well! May God bless you all!

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  49. Thank you God for what you have done & will continue to do in these babies' & their parents' lives! Continued love & prayers, Betsy, BJ's friend.

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  50. Annie,
    We are continuing to pray for Drake and Kennedy. I have shared their miraculous journey and fighting spirit with members of our church and they are lifting them up in prayer also. We are praying for Drake's infection to continue to clear and his little kidneys to begin to work again. We are praising God for Kennedy's continued improvement and praying she continues to grow in strength. We know God has sent the correct doctors and nurses and are asking for Him to guide them. Know that we are bringing your precious family to the Lord daily and trusting in Him to strenthen you and send those to minister to you.
    Teresa Garrett

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  51. I must refresh this page 100 times a day to check on the babies. I continue to pray for your family. Fight baby Drake, fight! I am so glad that Kennedy is doing well. She is so tiny and beautiful. May God keep you all in His embrace.

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  52. I keep coming back to this post so I can see Kennedy. She is so beautiful.

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  53. We were told we couldn't have kids and my wife had infrequent periods. She started feeling "funny" and found out she was 3 months pregnant. 3 months later we had Maci. 2lbs 14 oz. That was 3 years ago and it is still an emotional ball I am trying to untangle. Being the parent of a preemie is one of the hardest things to do. Maci was in a big clear plastic box when I first saw her and her face/head was covered (like in a lot of your pictures.) for 2 weeks I didn't know what my daughter looked like. I wanted to hold her so bad it felt like it was killing me. The greatest moment of my life was when the nurses finally let me hold her. They handed the blanket that contained my daughter to me and it was so light I thought that it was empty. There is no way a human being could be that small but my sweet baby was in there and it felt GOOD to hold her. One of the hardest things to deal with was the nurses. Why were they always hovering around me? Why so many stern looks? It wasn't until we had been there a couple of months that I realized that they were not here for me. They were here for Maci. Every day was a trial and a new hurdle to overcome. I still hear the alarm buzzing when her heart would stop. That was every day (it seemed like.) I felt like my life was a blur and I was just going through the motions trying to make it to the next day. People at my work were SO supportive. It really helped me to hear how a person's sister, daughter, son or whoever was a preemie and is now a full grown normal/healthy adult. This gave me so much hope. I pray it does for you too. Maci is now 3 and totally fine. No issues at all. Here are some tips I can give you... Preemie formula is hard to find and expensive. Target seemed to keep it in stock pretty good and the price was about the lowest we could find. Don't buy too many preemie diapers, they grow out of them fast. For like a year you can't take your kids out into public or have family over because they will have a really low or non-existent immune system. If you are family and reading this please know that the parents aren't being mean and they WANT you to see the kids but they can't. Please have some understanding in this. it's hard. One of the biggest things that I can give you for advice would be to keep your blinders on when you are in the NICU. You are there for your two kids only and there is a lot of horribly sad things going on around you that will give you nightmares. Love your children and treasure every breath. Every day is hope. Talk to them (I am sure you are) it helps, I think.
    The Knight family is praying for you.
    -Ron and Vickie Knight
    ron.knight@gmail.com

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