Who's the cutest girl around?

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.

Tuesday, August 01, 2006

Longer longest day ever.

So today started at 8 am (leaving the house) and we got home at 6:23. Long day to say the least and a bit more traumatic than yesterday. I hate when she's under anesthesia. Well we went to the clinic and got her port access and blood drawn for her CBC. It takes about a half hour for that to come back. We got her numbers...all the same except the platelettes were up to 54 since we had a transfusion yesterday (just a reminder 140-340 is normal so we are still no where near good). There was a big debate whether or not to give her red blood cells since her numbers were still really low. The final decision being YES. So after the bone marrow we were to report back for another transfusion.

We finally went over to the OR for the bone marrow. The only good part was that the let me stay till she fell asleep so I didn't have to hand her over while she was ballistic. But the used the drug that we thought she was allergic too and that was so hard for me. We told them all our concerns and they said that it didn't sound like a normal allergic response to that med (all i could think was there hasn't been much "normal" about her medically so why should this be normal?). Anyway they really thought it would be fine but as a mom signing that paper was so hard. What if I was allowing them to give her medicication that would harm her? Well we then waited outside the OR for what seemed like forever. Maybe because there were no chairs or anything to distract it was worse. I don't know. At one point the anesthesilogist came out and gave a big thumbs up and said she'll be ready in about 15-20 min, everything was fine...just wait for the doc to come out and get us. WELL...about 30 min later still no news. So I went in and asked what was going on. They said "oh its fine" and she would be out soon. Another 20-25 min and I'm starting to freak out. Finally our doc (who did the bone marrow) came out and said that everything was fine but was not waking up quickly. She was still completely out. He talked for a bit then left and one of the clinic nurses stayed with us for a while. They she checked AGAIN and Livi still wasn't awake. She told us to wait 10 min (stop watches please) and ask again. At about 9 min 40 seconds they finally came out. I went in and got to hold her. She was so incredibly groggy and limp. It was not fun to see her like that. She was upset and wasn't able to hold up her head or open her eyes...but confused and wanted to hold up her own head and was mad that I was holding it for her. She tried to drink a bottle and it was just too hard. (By this time it is 1 and she hasnt' eaten since 6am). After a little longer we walk her over to the clinic to start the blood transfusion. She fusses and cries the whole way because she doesn't want me to hold her head up but she's still to out of it to hold it up herself. I hate all of this by the way.

We finally got to the clinic and someone was in the quiet (single) room and the decided that since she wasn't fully out of the anesthesia that she would have to be in the infusion room (not what I was wanting and pretty discouraging). Thankfully there were only 2 other kids scheduled to be in there. Meanwhile we're waiting for the blood and Livi is crying cause she's....she doesn't even know what she is at this point (tired, hungry, hurt, scared...all of the above). We try everything to make her stop crying...until someone askes if she wants ice cream and instant stop. So Dad does a mad dash up to the cafe on the second floor but they are out so he goes to the the cafeteria all the way on the other side of the building. Ice cream was never recieved so warmly in all the ages as it was today! The nurses, my parents, Cynthia and I were all overjoyed to see my Dad come down the hall with that bowl of ice cream. She finished that and we moved over to the infusion room. We had a small corner of the room as our own. The grandma's went to have lunch (by now its about 2:45) and Dad and I played entertainers. The air conditioning wasn't working right and it was sweltering in the room and Livi was sweating like crazy. She kept going to itch her port and then just as the grandma's returned to the room she pulled her access out. Instant frenzy...Livi is screaming, there is blood all over her chest and everyones trying figure out what to do. The nurse comes in and we wipe her chest off and realize that its from the IV not her bleeding. Then we have to get re-accessed which is not fun cause she isn't numbed at all so it hurts. But she did really well considering. We finally get everything rehooked and she is settle enough for Dad and I to go have lunch. The rest of the infusion was as uneventful as a 3 and 1/2 hour confinement with a 1 yr old can be. We finally left around 5:40.

The doctor decided today to take her off of the Hydroxyurea. Not what I was expecting and not even something I thought was an option. But he wants to see if she has toxicity from the medication or from the disease (meaning all her other blood cells being so low). So we are not going to take any medication until August 10th and see what happens. I just feel so out of control and so helpless. I want to do something productive to help and now we are stopping the only medicine that was supposed to work. I know I need to trust God and that he's not suprised by this but I am human and I am suprised by this and not at all prepared for this turn of events.

Pray that her numbers don't shoot back up! I'm not even sure what to say to pray for. Pray for healing. Just pray

Thanks to...
...Jeanne Zelenak for the sweet card and gift
...Mr and Mrs Ogoreuc for the pig and book. She's been carrying the pig all over the place.

18 Comments:

Anonymous Anonymous said...

Praying and praying and praying!!!

Hope you rest well and can have a relaxing day tomorrow to recover from this harrowing day. YOur strength is amazing! A testimony to God's faithfulness!!!

Love, Les

7:48 PM  
Blogger Lynne said...

Hugs and kisses to you all.....you continue to amaze me with all of your strength....so glad Gretchen and Dave are there with you.....I thought about all of you all day.....Hope you all can get a good nights sleep and can relax a bit.....my best.
Lynne

9:32 PM  
Blogger The Garners said...

I am about to cry reading your account of the day. I don't know how you are holding it together, Emily! God's grace is truly with you. I know you have to have your moments, but you are such a pillar of strength right now. I have no words...may God continue to be kind to you by revealing His grace in new ways through this whole experience! Big hugs from me to you...and little hugs from Jude to Livi!!!

Julie

10:26 PM  
Anonymous Denise said...

I completely agree with Julie - you truly are an example of trusting in the strength of the Lord. Cole, Spence, and I were praying for you (Livi, James, grandmas & grandpa) all day. I am sitting here in tears and praying - praying hard - for God to heal Livi. I can't imagine the emotions that you went through today (let alone ones that you go through each day)- God's comfort and grace are there in each moment. We'll pray for rest & sleep tonight.

With love,
Denise

10:52 PM  
Blogger beth said...

Emily, I am praying for Alivia. For you and everyone else.
Psalm 34:17 says: "When the righteous cry for help, the Lord hears
and delivers them out of all their troubles."
I love you so much and won't stop praying,
Beth

10:54 PM  
Blogger All the Millens said...

What a hard day to walk through. Even though we can't walk through this for you, we join our prayers to the many who are still praying, trusting that God is using our prayers to aid you. May the God of all comfort lavish comfort upon you tonight.

Katherine

11:57 PM  
Anonymous Anonymous said...

There is not much that is harder for a mom than to see her little one suffer. May God continue to give you grace. Thank you for sharing in depth so we can have a better idea of exactly how you feel and of how to pray. Love, Gina

5:10 AM  
Anonymous kb said...

good morning emily!
thankful to hear you all made it through the long day and you're home safe & sound...even that is a gift from God i can easily overlook.
i hope you'll be able to get some rest and most of all, that you will find comfort in His Word today.

May the Lord Jesus Christ Himself and God our Father, who loves you, emily, and by His grace gives you eternal encouragement and hope, comfort and strengthen your heart in every good deed and word. May the Lord of peace give you peace continually and in every circumstance. And may the grace of the Lord Jesus Christ be with you now and forever.
2 thess. 2:16-17;3:16

love you three, kb

7:35 AM  
Blogger Maddie's Momma said...

Emily, I am continuing to cry out to the Lord for you and your family and for Alivia's healing. Our God is a faithful God! I pray that the "peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus" (phil. 4-7) As a side note, my husband is spending the week with your father-in-law...I may not ever see him again :) xoxo, Kelly Ross

7:43 AM  
Blogger Sara Rankin said...

Emily,

A couple of verse this past week that I've been reading during quiet times.

"Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us,"
2 Corinthians 1:9-10

"Then you will know that I am the LORD; those who hope in me will not be disappointed." Isaiah 49:23b

Emily, your humility in your struggles is priceless. Those who hope in God will not be put to shame nor is any of this in vain because it is strengthening your grip on God.

Praying for his sustaining grace for you, James, Livi and all the grandparents for this week! Praying for healing as well!

Love, Sara

8:53 AM  
Anonymous Lori Randolph said...

Dear Emily,

I completely agree with what everyone has written. God's continuous sustaining grace and strength is so very evident in your life, in Jame's life -- in this is whole thing. As Julie wrote, I echo...I have no words. As I am not a mother yet, I can only understand in part (a very very small part) the pain you are experiencing daily. Thank you for writing with such transparency -- it gives me a much greater understanding of what you and your family are walking through. In turn, I know how to pray for you better. I continue to be amazed, encouraged, challenged that you do not become angry with God, but turn to Him in humility for strength, wisdom, perserverance, grace, understanding and faith. Emily, your ability to see God's sovereign hand in all of this is so encouraging to me and spurs me on to follow your godly example -- thank you.

Praying!!!!!

Much care,
Lori

9:34 AM  
Anonymous Anonymous said...

Em-
Hoping that sweet Livi was able to sleep last night & that maybe you are sleeping in a bit this morning. (thanks to your parents!)
Thanks so much for the phone call last night--i dialed your # in tears & then hung up with a smile on my face...your optimism is so refreshing! your capacity to walk through this & still carrying others burdens is amazing! the strength that you find in the Lord--is an example to me.(& Scott)
"Have I told you lately that I love you?" =))))))))))))))
-ang

10:55 AM  
Anonymous Anonymous said...

Oh, Emily!
I can't believe you had the strength to write your blog after the day you had...but I'm so glad that you did; it is a testimony to the strength that God is giving you every day, every hour, every minute. God Bless you, dear!
Here is a picture I get in my mind sometimes (goofy as it may be)when I am facing a trial:
It's like you are Kelly Strug at the Olympics with that hurt ankle ready to make that vault. No one can do it but you, but oh, how the crowd is cheering you on! And you do it! You make that vault, but land on the ankle and have to hop on one foot because the ankle is SO sore. What happens next? (Bela Karolyi) Your trainer, your friend, the one who has been with you the whole time, the one who knows what you can do and knows your limitations, the one who knows you better than anyone, comes to your rescue and carries you off the field; your job is done. I like to think of that as a picture of all of us cheering you on (with prayers) and Jesus carrying you when it hurts so bad.
Still praying and won't stop praying until Livi is completely well.

Mary Ann K.

12:13 PM  
Anonymous tina said...

oh emily, what a long road you've been walking on. the Lord's giving you the endurance to do this. & others are being encouraged. what a hard day for you all. i will be praying. xoxo

12:21 PM  
Anonymous Joni Cairns said...

Emily thanks for keeping us so informed through your blog...I have no words to say that haven't already been said...just wanted you to know I am continuing to pray for all of you and will continue to pray...Joni C.

1:06 PM  
Anonymous Anonymous said...

Emily, I pray for sweet, deep, restoring sleep for you & Livi. How sad to watch your sweetie go through all that. Your family support is amazing, I'm so thankful they are with you on such emionally wrenching days. We are praying for you continuosly. Here are hugs & kisses for Livi, XOXOXOXOX! Love, Brandi & family

1:55 PM  
Anonymous Anonymous said...

Today was long, stressful, and Livi was a trooper. As was Emily. She is so strong for her girl. She keeps a chipper face all day at the clinic, is unfailingly polite and grateful for these nurses,,,I am left in wonderment at the strength only God could have given her, to watch Livi go through all this. God was merciful, no side effects from the sedation, she did well during the entire four hour transfusion, the ice cream panacea was hilarious. Thank you Jesus for ice cream! Thank you all for praying, writing, sending monetary gifts (so timely!!) and just walking through this with James, Emily and Livi. Thank you, thank you. Gretchen/Mom/Gigi

10:23 PM  
Blogger Jonalee Earles said...

Hi Emily~
Reading your entry for today I don't even know what to say except that God's grace is amazingly evident in your life - in how you continue to trust him even when you don't understand why this is all happening. THANK YOU for your example of humility (being honest about what you are feeling and thinking) and trust (preaching to yourself instead of listening to yourself). You and Livi and James are in our thoughts and prayers.
love,
Jonalee

10:28 PM  

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