Wednesday, November 20, 2013

A Roller Coaster

*DAY +42 POST TRANSPLANT & 49 DAYS STRAIGHT IN THE HOSPITAL*

     The time we have spent in the ICU has been such a physical, emotional and spiritual roller coaster.   Our little Hazelnut's body will make improvements in some areas, then seem to go backwards in others or new problems seem to pop up.  The improvements have been so wonderful for us to see, and despite the setbacks, and how they affect us emotionally, the doctors keep telling us we are staying on the right path (which is all we can ask for in the ICU).  First, let me share that the tremors have stopped!  She sometime's twitches a few times throughout the day, but the uncontrollable shaking that she has been experiencing for almost two weeks now is finally over.  The doctors are less concerned now that something neurological is going on!  So thank you for those specific prayers!  The ultrasound of her kidneys have shown no blockages and have not gotten any worse or better. She has continued to urinate and it is getting clearer every day! This means she has stayed off of the CVVH machine, and they even removed the line in her neck today!  They also removed the arterial line in her wrist and the catheter, so tubes keep coming off.  She has also continued pooping, which is another good sign that things are recovering.
     Despite all of these improvements, she is still struggling quite a bit.  As I  have mentioned before, since coming off the CVVH her lungs became compromised again.  With all of the urination, we hoped we would have seen some improvement by now, but they remain about the same.  She still needs an oxygen nasal cannula around the clock and when agitated is not breathing well.  The doctors believe this will improve, but it will just take time (something I hear A LOT).  Also since coming off the CVVH machine, Hazel has not been very responsive.  She had a few days after being extubated, and still on the CVVH when she was quite lucid, and that is when we captured those few smiles.  But since Sunday, she has been sleeping almost all day and all night.  When she is awake, she will look at me or watch a movie, but is not talking or even shaking her head yes or no to simple questions.  She just stares at me.  The CVVH machine acted as her kidneys before and would strongly filter out all of the sedation medication, making it affect her less, and in turn her body would require more.  However, now that she is off the machine, and her kidney function, although improving, is not at 100%, the medication that has been in her system (and the ones still coming in as we are trying to wean her through the withdrawals) are staying in her system more and hitting her quite hard.  The doctors believe she is just pretty "doped up" and will come out of it soon.  They still want to do an MRI, just to rule anything out, but her respiratory status is still not stable enough.  This part has been extremely difficult because we miss our little Hazelnut so much, and just want to see her be herself again! Please pray that she can come out from under these drugs and that her mind is unaffected!  Another issue is with her vomiting.  This is most likely a part of the withdrawal, and she is not doing it excessively, but the vomit has had some blood clots in it which could signal damage to her gut.  So she is now on a strong medication that should help protect it and allow it to recover.
     All of this being said, we are still so unbelievably thankful that she still is continuing to pull through all of this.  These days are very long and we wish we could go home, but the fact that God has even given us these days is an incredible thing.  We will stay here as long as it takes to get her well, fight through these tough and tiring moments and continue to rely on His strength and grace.  
     For any of you who missed this picture, it is one of the very first times I got to hold Hazel in weeks.  You can see how wonderful it was for both of us, but also how much farther she really has to go:



75 comments:

  1. Keep faith. Sleeping is good the body heals itself during sleep. Still Keeping her in my prayers. You got this hazel!!!!!

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  2. god bless her little sweet heart! prayers for her and your family. stay strong little beauty!!

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  3. Thinking of you and Hazel and wishing you strength and sending my prayers.

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  4. Precious baby!!!! I think about you everyday and pray for you everyday. You will be just fine keep pushing forward. Jesus loves you!!!!! Parents.... I pray for the good Lord to give you strength also... <3 Heather.

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  5. Awww i luff her <3

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  6. The angels wings are holding you hazel in the name of Jesus you Will be healed amen

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  7. Keep up with your recovering Hazel, you are doing an amazing job.
    I'm looking so forward to seeing your happy smiling face again soon.
    I talk about your illness often to my 7yr old daughter Amy and she says you are the bravest girl she has ever seen.
    Take care and keep on with your amazing recovery.
    your family are doing an amazing job helping look after you and letting everyone know how you are coping xoxo

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  8. May God give you strengh and Hazel speedy recovery and much health. It breaks my heart to read what you are going through.

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  9. I pray that she sleep good not be in pain and God heal her from every thing so she can be like other kids.


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  10. A very beautiful photo keep fighting little lady x

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  11. This is all so overwhelming, I know. I will pray that Hazel gives you a sign that she's in there, she's just fighting so hard, she doesn't have the strength for anything else. She's in there. I know she is.

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  12. May God help you all through this and sweet Hazel recover quickly. Please know we are praying for her and thinking of her!

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  13. Keep fighting princess !!!♥

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  14. Saying a prayer...for your beautiful Hazel girl and your entire family. Every time I feel like I cannot continue in nursing school because I am so tired, I think of all want to do and everyone I want to help. She is getting stronger by the day, even if you can't see it right away. God Bless. :)

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  15. Keep fighting hazel!! There is a light!

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  16. Little Hazel. You keep fighting, sweet girl. We are all pulling for you and praying for your good health every day. One day soon you will be playing out in the backyard with Roscoe and your siblings. 💜

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  17. Little Hazel. You keep fighting, sweet girl. We are all pulling for you and praying for your good health every day. One day soon you will be playing out in the backyard with Roscoe and your siblings. 💜

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  18. Dear Hazel, we are keeping you and your family in our prayers xoxo

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  19. Praying for you sweet Hazel...and all the family...those eyes make me cry. Debora.

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  20. I came across your story while reading my friends blog, whose 4 year old daughter is also ill. It breaks my heart to see these beautiful babies going through this. My daughter is six months old and I can't imagine having to go through what you are right now. Your courage, strength and love for your daughter is inspiring! I will continue to follow your story and pray for Hazel. She is just precious and you are one amazing mommy!

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  21. Keep fighting to get better baby girl! The prayers are still continuing!

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  22. Praying for her and you all constantly, may you see nothing but improvements day after day. God bless you all!

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  23. Precious Hazel, keep up the good fight. You are a special little girl.

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  24. Prayers continuing for Hazel and all of the family! God has blessed you with this hope and small recoveries--which are really big. Hazel is probably more tired now that her own body is doing all of the fighting and not the machines. Once she rests and the kidneys function better, she'll be more like her cheerful self.
    God bless you all!

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  25. Prayers continue for all of you. Sleep will repair and make her stronger and stronger each day. With love and grace you all remain in my prayers. Have faith that this will pass and will soon be a memory. Sending you all love and many healing graces.

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  26. I continue to pray for the whole family. I KNOW you are tired both mentally and physically. I KNOW you want to come home with Hazel!! I KNOW that you are seeing so much improvement with more than 100,000+ people and their families praying for this little Hazelnut!!!! I continue to pray and so does my family! Each of you are special and each of you are loved! God will continue to hold onto all of your hands as he heals little Hazelnut!!! We love you guys! Keep the faith!!

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  27. hermosa Hazel. Mis oraciones están en todo momento pensando en ti. Que Dios Nuestro Señor, te dé fuerzas para salir con bien de todo. Fuerza y mucha Fe a tu familia.

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  28. Prayers are with u and ur beautiful brave family. God bless u all xxxx

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  29. I cross my fingers for you and your little angel. She will recover and you are with her, despite the hard situation.

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  30. I will keep on praying for you guys and trusting in God for her full recovery and that we can see her beautiful smile again.

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  31. You are in my prayers sweet girl, your whole family is in my prayers.

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  32. Keep fighting baby girl Hazel, you are so strong and so brave...I think of you every day, and I pray for recovery...soon...
    My heart breaks when I look at the pictures and see how much you are suffering, eish I colud save you from all this/jasmina from Sweden

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  33. As all of us out her, I will continue to pray you get the strength from God to pull through all this. You must have remarkable hospital staff. Look how far little Hazel has come. She's on tough little girl. It is so good that you keep us posted. I think that writing what is and has happened also gives you the chance to reflect on just how strong your daughter and you, have been. God Bless and watch over you today and always.

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  34. Keep fighting Hazel...we are all behind youcheering you on. You are so loved sweetheart. Roar thru this.

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  35. Continued Blessings of Healing, comfort, strength and peace for Sweet lil Hazel and may her parents be strengthened each day.

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  36. There is nothing like a Mother's Hug... and nothing like holding your child in your arms....so happy you both shared that moment.. You both need it that so much... brought tears to my ears... happy tears though...Keep the faith

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  37. I am praying for her every single day! And for you to stay such a strong mom!

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  38. God ,please hold your arms around Hazel and heal her. Let her rest and heal her body. It will take time, but she is with Gods help on the right track. Bless!

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  39. Lots of prayers being said in Kill Devil Hills, NC. for Hazel and her family.

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  40. The picture is precious! God knows that the best medicine Hazel needs right now is the comforting arms of her mama. Focusing on all the things going right, it is so clear that God is healing Hazel as we speak!! I am praying specifically for her lungs to clear, and her withdrawals to stop completely--no more vomiting, no more trouble with meds upsetting her belly, and that the doctors will be able to find the perfect balance of the amount that Hazel will need to be pain free, but able to come out of the haze so her little smile can shine through!! I pray every day, several times a day... anytime that I think of Hazel (which is a lot!) I whisper a prayer, and I ask God again to please take my strength and pass it to your precious girl. I also pray for your continued strength and faithfulness (which is both amazing and inspiring) and that brighter days are ahead for all of you, and soon! Sending love and prayers <3 I know next time you update we are going to have spectacular news and more smiles!

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  41. God please heal Hazel, heal her little body and ler her smile again...
    Hazel, Im praying for you, many times every day, Im thinking of you and wishing you will get better soon/jasmina from sweden

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  42. I'm just learning of your story and let me tell I can't stop crying. Children shouldn't have to pass for something so hard. That been said Hazel and her family will be in my prayers. I hope that Hazel continues to improve and that she can be back home soon. "I can do all things through Christ who strengthens me" Philippians 4:13

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  43. Prayers for her and your family.

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  44. Keeping your little girl in my thoughts and prayers.

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  45. Praying for you all. I hope little Hazel improves everyday and can be a normal healthy little girl again. Bless You!

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  46. Lauren, I am so glad that you are focusing on all the "good" that is happening with Hazel and her recovery. I wish your family didn't have to go through any of this. It doesn't seem fair. However, as I follow this blog, I hear the love this family has for each other and the trust that you have in the Lord. This has to be the hardest thing for a Mom to go through and yet you always leave us speechless and amazed by your faith and trust in God!!! He has brought Hazel through some of the toughest times, I know He won't fail her now. I can't explain it but I love your family as if it were my own. Thank you for letting us follow your family through this time. I do believe that allowing the world to see the trails and tribulations that you and Hazel are going through, has brought many people together to fight with you through prayer and some of us haven't done that in years!!! God is good...some of us, including myself, had forgotten that ....until now. Continued prayers for Hazel's recovery and for you Lauren to stay strong. Your strength is amazing!!!

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  47. I'm very sure holding her made her feel a lot better! I an so inspired by this this girl and her fight that I filled out an application to volunteer at a Children's hospital here in Chicago.

    Keep on fighting Hazelnut!

    --Peter

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  48. "Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, Since you are precious and honored in my sight, and because I love you," Isaiah 43:1-4
    This was part of my devotional today and thought I would share it after reading your post! God bless you and your family as you are set apart as His children whom He LOVES!

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  49. anouther Angel by your sideNovember 21, 2013 at 11:13 AM

    Praying hazel for your sweet smile and happy eyes to once agian grace this world we all need you hazel your lil smile is sooo inspiring to some of us on days when I'm sad I know I can read about your progress and lillys and smile I do because your soo pure and everythng good shows thru you. Always in my prayers and forever in my heart never stop fighting sweet girl!

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  50. Always keeping Hazel and your family in my prayers! I cant imagine the overwhelming joy you must have felt being able to hold her for the first time in weeks! She is such a beautiful little fighter and is so blessed to have such amazing and strong parents to help her in any way you guys can! Sending prayers, positive vibes, and good thoughts your way!

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  51. Prayers for Hazel. May hope and faith bring you peace during this difficult time. Each and every day is a gift. May Hazel feel much better soon so she can smile that enchanting smile once again.

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  52. Sending love to you Hazel and to your whole family! You are one brave girl! You have Durango, Colorado behind you. -Maya

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  53. God bless you and your family. I came across your blog because of the pizza story and I've gone back and read through everything. Hazel is much stronger than anyone I know. Keep the faith and you'll see things will be much much better soon. Lots of love and good wishes to your family.

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  54. I pray for Haze and your family!!!!
    I am Brazilian and I always read the news about her!

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  55. My heart goes to you baby hazelnut! Keep fighting don't let stupid cancer take a way your joy! And your future! We are here keep praying for you! Love you hazelnut

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  56. Father, bless this family with your strength, and little Hazel with your peace and healing. Guide the medical team. You are the hope of ages, our rock. Thank you. In Jesus' name.

    Karen (Irvine, CA)

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  57. I'm sending prayers to Hazel and the family. God is a good person. I'm asking for him to heal her and to keep the improvements coming. I'm praying that the family has as much and more strength then needed to help this little angel. God Bless each and everyone of you.

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  58. wishing and hoping you have a full recovery and a beautiful life, your story is heart breaking,
    if you want to find a cure for Neuroblastoma, and improved treatment options,
    this THE foundation to support,
    they WILL make it happen one day, with your help....
    http://www.theronanthompsonfoundation.com/

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  59. Keep up the good work momma! Your presence alone is helping her. Praying that she comes off the drugs unharmed.

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  60. Sweetheart of hearts...oh how we are praying for you. Little Angel Hazel, we can't wait to see your precious smile and see you home where you belong. We keep those visions in our mind and bring them straight to God who is in control, and it is God that will continue to guide and heal.

    That picture touched so many hearts and I'm sure it was a special moment to finally have your little girl in your arms again...and Hazel felt her mommy's love and felt peace in the circle of your arms.

    Father we lift Hazel up in prayer and ask in Jesus name that she continue to go in the right direction until she is completely healed. Amen and Amen.

    God bless you Hazel,
    and God bless your loving parents and sisters and brothers~

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  61. Lord, please allow this family physical rest, emotional rest, and spiritual strength. Thank you that the tremors have ceased and we ask in Your most holy name that the twitches are calmed by You as easily as You calm the might seas. We praise You for protecting Hazel’s mind and kidneys. We prayer favor that the kidneys are fully restored and that her brain has no ill effects. Thank You for removing some of the abundance of tubes and if we may be so bold as to ask for all the tubes to be removed and a fully recovery celebrated. Please Lord, let Hazel not struggle but rest in Your arms and the arms of her lovely mom and dad. Jesus we ask uncompromisingly for the restoration of Hazel’s lungs as we rely on You for healing. Lord, please give the parents resolve as they wait, pray, and are diligent in Hazel’s care. Jesus may we also ask for Hazel’s smile to return and be a part of everyday as we praise Your name. We thank You for the much needed rest as her body fights for full recovery. Lord, let the drugs be a thing of the past and smiles and giggles ever present. Lord, we know Hazel is Your child and that You too care so very much for her. Please give the doctors Your mighty wisdom and an overwhelming sense of Your presence. Lord, please touch Hazel’s stomach and bring healing there too. As the family continues to rely on You let it speak volumes to the hearts of many. Thank You for Your grace, strength, love, mercy, and healing. Diligent in prayers; diligent in Christ. Amen!

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  62. My prayers are with you all.

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  63. I keep on reading your blog about Sweetie Hazelnut. Your family especially your little girl is always in my prayers. Keep the faith strong!

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  64. All my prayers for Hazel, /jasmina

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  65. Due to the pizzastory I read Hazel's story for the first time today. What an amazing journey she has made already. And what strenght you and your family has shown! Of course I will pray for little Hazel and your family everyday from now on. As a friend told me when my own son was born almost 7 years ago: 'God smiled on the day that your little angel was born'... I am sure that that applies for your Hazel as well. I have faith that he is anxcious waiting for the day that she will be better and He can smile again!

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  66. God bless her... She will be fine! She will get well!!

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  67. God bless you, Hazel, and praying for healing for her whole body, wisdom for the doctors, and that peace that passes all understanding for this precious mom, and the entire family.

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  68. May God continue to bless your family! Hazel and your family is in my prayers.
    Joshua 1:3-9
    I promise you what I promised Moses: ‘Wherever you set foot, you will be on land I have given you ... No one will be able to stand against you as long as you live. For I will be with you as I was with Moses. I will not fail you or abandon you.

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  69. Keeping Hazel and your family in our family's prayers. What does not break us, can only make us stronger. What does not tear you apart, will bring bonds that are indestructible....

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  70. I think all time in Hazel and her Family.. all my best wishes and my prays for all of you.. I Love U guys..

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