Freaking Out

I don’t understand why my daughter is not recovering from this infection like she always has in the past.  And the thing that is most stressful is that she is in a new hospital.  They DON”T KNOW HER!!!!  I am confused by the meds they are giving her and why she is on them when she never really needed them before.  Is it that she is just really sick this time or that they are giving her too much?  I don’t like hearing that they are experimenting right now with positioning and meds to see what she likes best. 

I miss our nurses and RTs.  I want her to go back.  I am exhausted with worry.  I want her other mommies to go back to taking care of her.  They never told me to call back repeatedly.  They never told me they couldn’t talk to me.  I never had a doctor hang up on me because they had to go to a delivery.  I want to get her team from Los Robles and pile them in my car and take them there to help her.  Dr. Mah has been there this week and has been keeping tabs on her.  I know that if there was something really wrong what they were doing he would say something so I guess everything is OK.   But at the same time I don’t know. 

WHY IS SHE NOT SATURATING WELL!!??!!  WHY IS SHE STILL ON 100% OXYGEN!??!!  Are they causing some of this because they don’t know her or is she just really that sick??

Friends, I’m loosing my mind.  I am so incredibly stress ridden and overwhelmed. 

Please…Lord. PLEASE, please heal my baby.  Lord YOU raised Lazarus from the dead…you can surely breathe your breath into Taryn’s lungs and heal her in an instant.  I am begging, please, please heal her now or take her home.  I can’t take it anymore that she has to continue to go through this.  I don’t know how to pray any more.  I don’t know how to do this anymore.  I need relief Lord, and need You to make Taryn better.  Spare her sweet little life Lord I am begging.  But please don’t drag this out if Your plan is to take her home before I can.  Lord I believe in Your miracles, but I am afraid and am growing weary that You are not going to give us a miracle of healing.  I pray You send Your Angels into that NICU, I pray You cover her in Your protection.  Please let her know that You are there.  Do not let a single person touch her or make a decision about her care that isn’t inline with YOUR plan Father.  Please Lord, PLEASE!  please heal her.

If you read my blog, and are praying for Taryn please leave a comment.  I know that you are all out there as I get an average of 133 hits a day.  I need encouragement right now.  I need some physical proof of the support I have out there.  I know its weird to comment and it’s easier to be a “lurker” and just read my blog, but I need to know who is out there and is standing in the gap for us.  Even if I don’t know you.   This is a super lonely long road.  And I am growing very very tired.

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38 Replies to “Freaking Out”

  1. Nellie, I know its hard. Try and remember that this is where Los Robles felt she needed to be. This is what they do. Hold strong to your faith and know we are here for you and holding Taryn deep in our prayers.

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  2. Janelle I feel your pain deep within my heart. I too have been in that cross road with my daughter Isabella. I just wanted Izzy to be pain free and comfortable. It was that not knowing that killed me the most. Please keep your faith and let God take the wheel, and know that this is all in his hands. If you ever need a hug or someone to talk to please contact me. I’m not afraid to answer any questions you may have. love and hugs.

    Marisa

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  3. I am right over here, dear Nellie. In you corner praying for dear Wee one to get healthy. I have no words to relieve your stress and anxiety but I am not certain that is what you are looking for at this point. Know that you and your family are loved and prayed for in this journey.

    The new doctors and nurses are the very best and are needing to find what can bring your baby out of this crisis. Sometimes it is not something that is simple. Have faith. Remember you must go through to get past.

    I love you, dear Nellie. And I send thoughts of healing and peace to you, Ben and Taryn

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  4. Janelle,
    You have been incredibly strong throughout this process and have shown amazing grace. Familiarity is comforting and change is hard. Im sure Taryn is getting exactly the care she needs right now. We are sending big kisses and hugs.

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  5. Dear Janelle, i am one of those people who never leave a comment before. Ok, maybe once. I did not know what to comment because most of the time i was in tears after reading your blog. Please know that Josie and I pray for Taryn every night as part of our ritual for the past 16 weeks..she is also in my prayers whenever i have time to do morning runs. Your faith and honesty inspire me to keep praying and hold on to the hope. Yes, i don’t know you but i feel that i know you so well through all of these as i cry often whenever i got not so encouraging news about Taryn and i rejoice with you whenever she makes progress and keep gaining weight.She is a fighter!

    Please don’t give up because i am not giving up. I will not pretend to know how hard this trial is for you but you and your family are constantly in our prayers. I still hope that there will be a day Taryn and Josie will be good friends. After all, Josie is so used to hearing Taryn’s name…

    There, you are asking for a comment…you got one weird comment. We love you, Janelle, Ben and Taryn.

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  6. We still pray for you, your daughter, and Ben everyday Nellie. We pray for health and healing for Taryn, strength, courage, and peace for you and Ben. Love you!

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  7. Janelle,

    I know what you are feeling right now. I lived that nightmare with Ava. I have thought your thoughts, felt your pain and prayed your prayers. Be strong and try to be tough! Follow your instincts and demand to speak to doctors… Not just residents and fellows… Weekends are hard in big hospitals… Get your attending physicians to answer questions… Call your old team to help guide your questions…. Be her advocate…. You need to find God’s strength and be her protector! Not fun shoes to fill, but you have to fight for her life…. Don’t give up!

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  8. I suppose I don’t leave as many comments as I should as I have no words to make this better. I’m your mom and I don’t know how to help you. I’m praying constantly for you, Ben and Taryn. I pray God will reveal His plan to us. I love you guys more than words can express. Stay strong my daughter.

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  9. Oh Janelle!!! we are praying for you and baby Taryn!! My 2 1/2 year old daughter Kimberly and I pray for her nearly every night. We stand beside you, supporting you in prayer dear sister!! May the Lord comfort you and Ben and give you peace. And please Lord, heal baby Taryn!! Lots of love, the Harners

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  10. Janelle-
    I am so sorry to hear about the struggles that Taryn is enduring and know how difficult it is to watch your child go through this. I think of you and your family and pray for you all everyday. I am glad that my twins were Taryn’s neighbors at Los Robles. I’m sure the new Dr’s and nurses are doing everything that they can to help your daughter. Stay strong and know that if you need anything (even if just a shoulder to cry on or someone to listen) you can reach out to me and I will be glad to try and help you.

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  11. Janelle, I am one of those ‘lurkers’, and thank you for encouraging me to respond! I cannot imagine what you are going through but I can tell you, by sharing your story you are continuing to touch peoples lives through Taryn. God has a plan for you and Ben and Taryn. and I promise some day it will become clear. Jesus hears all our prayers that are for your sweet little daughter. Continue to be patient and listen closely for Gods response. You are an amazing testimony to hundreds of people! He is using you, Janelle, for His greater good.

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  12. Janelle and Ben,
    We pray for you both and Taryn everyday. Your heavenly Father has given you encouragement in his word. They are living words written for you. You don’t have to have to have the words to pray, they are right in His word, written just for you when you don’t know how to pray. If He gave you words, surely He can give you peace.

    Psalm 33:22 Let your mercy, O lord, be upon us, just as we hope in you.

    Psalm 34:4,7
    I sought the Lord, and He heard me, and delivered me from all my fears.
    The angel of the Lord encamps all around those who fear Him, and delivers them.

    Isaiah 43:2,4a,5a,7
    When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned. Nor shall the flame scorch you.
    Since you were precious in My sight, you have been honored, and I have loved you.
    Fear not, for I am with you.
    Everyone who is called by My name, whom I have created for My glory; I have formed him, yes I have made him.

    Phillippians 4:6-7, 13
    Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
    I can do all things through Christ who strengthens me.

    Love,
    Stacey & Joth Riggs

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  13. Janelle-
    I am sorry- I read your blog everyday and I have never made a comment. I am one of those. I am so sorry. I just do not know what to say. I can not imagine what you are going through. It must be so hard and it has been going on for so many months now. I think of you, Ben and Taryn everyday. I hear your pain and frustration. How hard it must be to now juggle your life and commute to a new hospital and some how have to just trust that these new set of doctors and nurses will do everything they can for her. Los Robles felt this was the best thing for her. They have more to offer her. She will pull through this, like she always does.
    Thank you for sharing all your honest feelings in your blog. It is your therapy during this difficult time. We are here for you. We are parying for all or you.
    Tim and Paula

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  14. Your entire family is in our thoughts and prayers for encouragement, peace, and hope. Keep the hope, Janelle.

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  15. Janelle,

    I spoke with my mom this morning and we will both be asking the elders at our churches to pray for Taryn’s healing today. God’s timing is perfect. He knows the plan for you and your family. Our job is to pray and wait. I am praying now that God will give you the peace that passes understanding….

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  16. I too read your blog every day and all of you are in our thoughts constantly. I wish there was something I could say to make things better. Taryn is in one of the finest hospitals and the best of hands, you have to believe that.
    All our love to all of you.

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  17. Janelle,
    Abby, Anthony, and I pray for you, Ben, and Taryn EVERYDAY! And I have many prayer warriors in the job, too. Your family is on our church prayer list, and Pastor Tim prayed for you all at Sunday services. We won’t stop praying until we get an answer!
    You are NOT alone. We are here, walking every step with you. Please, PLEASE lean on us. Leaning on others was the only way we survived. We love you guys, and are praying.
    Love Jen

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  18. Honey, you guys will make it through this. Prayers are answered in many different ways, some not so obvious. We love you.

    Donna and Chuck

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  19. “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” (Ephesians 3:20)

    “For with God nothing will be impossible.” (Luke 1:37)

    Praying!!!!!!!!!!

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  20. my heart is heavy for u janelle…..but you cant give up. it wouldnt be fair because taryn hasnt given up. these new dr.s and nurses are taryns next step. just remember your feelings when you first went on bed rest. you are now dealing with the big guns now. this is there job. if robles could handle taryn shed still be there. if ucla couldnt handle her shed be somewhere else. dont be pushy and just take deep breaths and dont forget u have a husband who is feeling this way too. i think u should seek help for you and ben…someone to tAlk to whos been through this…maybe lynn from church or a therapist….you cant do this alone! we love our nellie bellie! call us anytime

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  21. Dimitri and I are here as well. Plus we always keep my mom in the loop. Everyone sends their blessings to you, your family and taryn.

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  22. Hi Ben and Janelle,
    We nurses, doctors, RT’s, etc, we are all just human – we are not God, as you well know God is in charge of Miss Taryn, and ALWAYS HAS BEEN. We simple little humans have just been his worker bees. All of us just draw from our experience and knowlege and then have to play the game of what Miss Taryn will tolerate, what will help her, what won’t… Her new nurses love her too! We continue to pray for her because we don’t want to accept that maybe she won’t get better! How can that be God’s plan for her?? It’s not ours! My daughter Paige just read this too and she will pray for your beautiful little girl! I work tomorrow but I’m off on Tuesday – maybe I can come and see her! I’ll let you know. Miss Taryn’s 1st primary :))))

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    1. my sister said she had to give up nursing just because of stuff like this. It takes amazing people to do what you do. Trying to not be emotional would be nearly impossible. We thank all of the dr’s and nurses and rt’s for all that they do! From the bottom of my heart THANK YOU!

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  23. Janelle and Ben,
    I am so sorry to hear you so sad. Taryn is a gift to all of us and I know we will pray every day for good health and for her to become well enough to come home. We all will be waiting for her. You are not alone!!!!!! Love Ya Guys

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  24. Janelle,
    You are an incredible mom. What love you have for your daughter and the Lord. I pray for healing and for peace of mind for you. You are loved and prayed for. Stacy gave me your blog. I’m in here small group. “May the Lord bless you and keep you the Lord make his face to shine upon you and be gracious to you. The Lord turn his face to you and give you peace.” Numbers 6:24

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  25. Janelle,
    I am in awe of your strength, and faith. You are a testament of a true believer! I can’t even begin to imagine this journey you and your family are on….I just know you’re not alone. I do believe some how that God is using this time to glorify him. I know Taryn has a special place in this world! God will reveal this…Trust me, he works in amazing ways!
    Please stay strong, and lean on all of us, who stand with you during this time. My family, and some of my very best prayer warriors continue to lift healing prayers for Tayrn, and that angels surround all of you, to bring hope, strength, and faith to get you through this!
    Michelle, Rick, and Sara

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  26. Janelle,
    I cannot imagine what you are going through. It doesn’t seem fair that this is happening to you and your sweet baby girl. I pray for her often and will continue to pray until she is better and at home with you.

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  27. Janelle,
    I am Peggy Mckissick’s daughter. I just want you to know I have been checking your blog on a daily basis and ask my mom constantly about any new updates with Miss Taryn. I know this is a really difficult time for you and Ben and I want you to know I have been praying for you guys and Taryn. I am Miss Taryn’s cheer leader on a daily basis! I want you to know that I am here for you and Ben and if you ever need anything whether its driving you one day to the hospital or cleaning around your house I am open to helping you out during this difficult time. This is your time to lean on everyone else and don’t hesitate to ask for the help. Remember to keep hope in your baby girl and try not to give up! She is a tough little fighter and I have faith that she will be able to pull through all this.

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  28. Janelle, Its been awhile since I’ve read one of your blogs and it would have to be this one. It breaks my heart to read this.
    Dillon just went to bed and wanted me to let you know that he prays for Taryn every night (as we all do). You and Ben are also in our prayers.
    There is so little I can say except that the drs and nurses are doing everything in there power for Taryn. There is no way to justify the way a doctor may talk to you, but when they may seem abrupt it might be because they have so much on their plates. They rely so much on their nurses and the individual departments around them to do their parts as they are instructed and sometimes they don’t have time to stop and explain what is going on like they should; or what the medications or the procedures they are currently giving Taryn are for. Taryn is still fighting, don’t give up! I know you are exhausted and feel as if you can’t go on, but think of all these individuals that have come forward that have been following your blog and are giving you support! They know you can do this! Ben is working so hard at work, then has to come home and go to the hospital then still get sleep then do the cycle all over again. He has it really rough also…you both need to push through this and keep the faith! WE ARE HERE FOR YOU!!! Call Us!!! If you are exhausted, weary and don’t know which end is up ask for help, we will pray with you, drive with you or just listen. We all Love you Janelle, you have family you have to remember that! Love Auntie Karen

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  29. Janelle, I too read your blog everyday and you are in our prayers. YOU ARE NEVER ALONE!!! Just look at how many hearts your little Taryn has reached all over the country. She truly is someone very special.

    Love
    Robert and Patty Perona

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  30. Janelle,
    I’ve known you since you were born. You might not remember me but you were such a sweet little girl and I have so many fond memories of you when you were small. I’m thinking about you and you family and praying for all of you daily. Your entire family is very very special to me.
    Kerry

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  31. Janelle:

    I know that right now you are overwhelmed with getting to know new doctors and nurses and being in a different hospital. I don’t know how I would be if I was in your shoes, but I do know from going through all the problems with Alex since he was born that Children’s Hospital has been a life saver for Margo and baby Alex and he still goes there for exams and treatments.

    I’m praying that God will lead you to a special doctor and a nurse that you completely trust at Children’s and you can have all your questions answered regarding Taryn’s health issues.

    As a parent, don’t be afraid to speak up and tell the doctors that you want them to explain things to you in plain English, not their medical terms and that you need someone as a contact person whom you can always talk with.

    Our prayers are with Taryn for a complete recovery and for you and Ben to be able to be strong for her.

    Love you,
    Aunt Diana & Uncle Paul

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  32. Dear Janelle and Ben,

    You are all in my daily prayers. I pray the Lord will continue to sustain you during this difficult time and that there will be complete healing for Taryn.

    In God’s Love,

    Yvonne

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  33. Oh, please know our earnest prayers are out there for both of you and your precious little girl. You don’t know me, but I feel as if I know you. I don’t know your pain, but feel as if I know it.

    Please don’t give up. Remember that God never gives us more than we can bear. And you have a little girl who needs you, your love, your patience, and your tenacious
    fight on her behalf.

    My prayers abound,
    A Sister in Christ

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