I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day +27
Today was another day. Livi woke up in a really sad mood and took about an hour to want to play or let Pa hold her. Usually she likes that he is here and doesnt' even notice if I sleep a little more but not today. We are still chugging along trying to get more meds oral and get her to eat some. Right before her nap was tough because she opened the fridge and saw pudding and wanted it. Of course dairy is the only thing she can't have and she was distraught. It is so hard to deny her food when she finally shows an interest. There was some small frustrations over some silly rules that we didn't understand (having to do with activities and toys that are donated..hard to explain and not really worth talking about).
Tonight James got to spend the evening with us and I was so excited. We had to give Alivia a bath and after for some reason she just wasn't happy again. My mom held her for 45 min while James and I spent some time alone then we came back to give her some oral meds. Then my Dad held her for a while and then me. While I was holding her she was eating some pretzels and wanting to drink and I realized she wasn't using her left arm (which is her dominate arm). It was strange and I started to try to get her to do things with it and she got really upset and was crying really hard. The nurse came and looked and then a doc. There is no noticable swelling (which could mean a blood clot or that the broviac has a tear under the skin and is leaking fluid and blood) but she won't use it and would cry uncontrollable if you tried to move it. Very sad. She didn't fall asleep till 12:30 and ever since has been crying out in her sleep ever 20 min or so. She just cries "no" over and over. So she is back on Morphine every two hours and if she is still seeming to be in pain in the morning she will have to have an x-ray to rule out all the serious possibilities. We are hoping that it is just a pulled muscle from the way she has been holding her head due to the NG tube. This NG tube has cause nothing but problems so far. It will be a week tomorrow from when we put it in and it has not been a good week.
Please pray that pain will subside while she is sleeping and she will awake with full use of her arm. Pray that there is no need for an x-ray. Pray that she gets some peaceful sleep at some point. It is excruciating as a mother to listen to her crying "no" over and over and know that there is nothing I can do to make her dreams better.
posted by Alivia's Momma @ 1:41 AM
26 Comments:
I'm still praying for Livi, you & James, and both of your families. Praying for your requests each day. You are the perfect mom for Alivia, there's no question about that. God has designed you to be her mother knowing that this was the plan for her life. Your love for her has always been amazing. There are things you cannot do for her (her dreams, responding to the NG tube, oral meds, her sore skin),but the Lord knows. He knows each intimate part of her body - how she will respond to all of these meds, her blood counts... all of it. Even though you can only comfort & hold her, God is taking care of the rest. He is with her and is the father of mercies and God of all comfort who comforts us in all our affliction (2 Cor. 1:3 & 4). That is Truth and I pray that it will help you (& James & your families) to make it through those difficult moments of each day. Love you.
Hey Emily,
Just wanted to let you know I'm praying for Livi-healing for the arm, healing for her body, and peace for all of you.
Praying still.
oh my heart is aching for all of you. you continue to be in our daily prayers. God bless you.
love,
karen & joe
My heart goes out to you Emily in this extremely hard time. I'll be praying that Livi's arm pain isn't serious and corrects itself.
love,
Viv
Continuing to pray knowing that God knows your every need.
Love, The Plains
I will pray for her arm. After all that is happening, I am sure that is the last thing that you wanted to happen. Keep trusting God, he will get you through this. You are in my thoughts and prayers.
love,
moriah
I can't imagine how overwhelmed you are--
Alivia is such a precious little darling.. I know everyone's heart is breaking ..
I keep you in prayer..
Phyllis
I was getting some songs ready for Sunday morning and thought of you. I pray these words will be real for you today. May He be your hope and your help as we continue to pray for healing.
I serve a risen Savior He's in the world today. I know that He is living whatever men may say. I see His hand of mercy, I hear His voice of cheer' and just the time I need Him, He's always near.
In all the world around me I see His loving care. And tho' my heart grows weary I never will despair. I know that He is leading thro' all the stormy blast. The day of His appearing will come at last.
Rejoice rejoice O Christian. Lift up your voice and sing eternal hallelujahs to Jesus Christ the King. The Hope of all who seek Him, the Help of all who find. None other is so loving, so good and kind.
Kathy from Living Hope Church
Oh Emily, my heart goes out to you! I know that, as a mom, what you are going through is so incredibly hard. Please know that your precious baby is in the daily thoughts and prayers of a stranger many miles away. And that my prayers are joined with those of so many others. We're all concerned, we all care, we all BELIEVE that you will get through this. God bless you guys,
I am a friend of Angie Stoltzfus and have been following your blog for awhile now. I am so sorry for all that you are going through. Please know that you are in my thoughts so so much and I pray that today would be a bit "brighter" than the past few days have been! Your daughter is so precious and I pray her spirits would be lifted!
I pray that God would give you what you need for today! We love you all so much!
Emily,
As I was reading your update and Alivia's desire to eat pudding,I wondered if you've tried introducing her to different yummies such as warm oatmeal - maybe with something sweet on the top like sugar, berries, etc. Or how about warm toast with suger and cinnamon. Just trying to think of something to kick start her taste buds so that those meds can go down a little easier.
Love you honey and we're praying for you all to come back to us soon.
From one Mom to another,
Loretta
I'm so sorry and sad to hear that things are more out of whack. Just not fair. Praying for Livi's specific needs and that you gaggle of caregivers remain strong. One of my favorite memories of last weekend, besides Scrabble ;-), is being audience to GiGi telling Livi stories about when Emily was a baby and the other about the nun telling Gigi she shouldn't sing. That is quality time! You guys have a Happy Easter.
Bunny love,
GAL
You don't know me but I have been reading your blog daily and praying for you and you cutie pie ALivia is such a darling and I will be praying for her left arm, the NG tube and her complere healing can't imagine what you are going through trusting in the faithfulness of God
Becca (Covenant Life Church, MD)
I'm praying for refreshment for all of you and healing for Livi. I hope the arm thing is nothing serious. Praying for sweet rest for everyone there. God bless -
Cathy S.
This was certainly a day to identify with Jesus on the Cross (I just came from Good Friday services and ran straight to the computer for some good word about Alivia, but alas, it still is not good news. My prayer is that by Easter you will have a Resurrection of sorts with Alivia. May God continue to bless and heal you all from this most difficult time. You continue to be in our every prayer.
We continue to pray for Alivia. Praying today that God will give her peaceful rest...
Mike & Destiny
praying everyday
Just wanted to let you know that my kids prayed for Livi at supper today ... they actually remember on their own to pray for her. It must be the Lord reminding them. :) God be with you. Continuing to pray for that miracle, Love, Janet S.
thinking of you, praying for you, & missing you~Ang
Thinking of you! What an absolute comfort it must be for Livi to have mommy always there with ideas, kisses, hugs and giggles. I am almost 40 and always feel better when my mom is with me. How great to for her to have such amazing love by so many. Praying for increased appetite, rest, healed arm and sleep.
Diana B
I'm praying. I can't stand what you guys are going through. God is powerful. God is strong. God knows what He's doing and knows exactly how to do it. I will pray and trust Him to answer our specific prayers for your lovely Livvy. It makes us so sad to see you guys suffer. I'm so happy that God has given you love all around.
We love you,
kristi
Going to bed with last prayers of the day for Livi's arm to be perfctly healed of any problem and that there will be something for her to eat that will bring a big smile to her sweet face. Also for refreshing sleep for allconcerned and unexpected blessings for the Easter weekend. So many at church contiue to tell me that they don't forget to pray for Alivia. Marmie love to my sweet family.
Poor little girl! My heart is breaking for her and for all of you...and at the same time there have been so many evidences of God's grace.
We love that sweet little Alivia and you too, Em! We're praying!
Julie
James, Emily and Alivia,
Although it may seem so at times, God has NOT abandoned you. I know that you are clinging to him. I started counting the number of days you've been in the hospital this time and I believe you are close to 40 days (like others in the bible in the desert) . I hope you come out of your desert real soon. Please Lord, give them strength!!
Love snf prayers,
Anne Bowden
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