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Friday, April 6, 2012

*updated* Heart on my sleeve and the tears came like a flood!

Pin It I am weak but He is strong. And thank goodness because it is not by my strength alone (my strength at all) that I have gotten through this. But I have to say, I have had peace beyond understanding this whole time. Peace that could only come from the Father. He created Ivy, how beautiful that the one who created her is the one who is comforting and healing her!! It just brings me such joy to know that He loves her more than anyone could ever love. Joy is eternal! What a perfect name for baby girl.




Today has its frustration and sadness. My heart is on my sleeve today because I can not stand to watch my child in discomfort or pain. I was told yesterday that if they intubated Ivy, she would be completely sedated for the 48 hour period that they needed to let her lungs rest. This was all ordered by the doctor on this floor, not my cardiologist and surgeon. He is very aggressive with intervention and is the one who tried to push the feeding tube on Wednesday. My cardiologists had surgeries all day yesterday so we never saw them. This doctor told me that a patient her age would try to fight the ventilator, pull it out and therefor would be completely asleep and very comfortable. She slept peacefully until about 10pm last night. She was up the rest of the night. I walked in very early this morning to a baby that was restrained by her arms and her legs, she was struggling, trying to wiggle all over the bed, crying without sound, grabbing at the tube coming from her mouth. She had pulled her feeding tube out twice already. Her right eye is so swollen on top that it looks like it is open when the other is closed, her mouth is practically taped closed, the feeding tube is taped in such a way that causes her nostril to be pulled upward and her skin is starting to bleed because of it. They did this so she would not be able to pull it out. Wouldn't her being asleep keep her from pulling it out. Why isn't she asleep. I have the most lovely nurse from the night shift. I think I snapped at her a little when I saw Ivy this way. No, I did snap at her. I quickly apologized, hugged her and began to sob. My heart is on my sleeve this morning. I feel weepy, even typing this, I just keep tearing up and having this ridiculous pitty party. I am Ivy's only advocate right now. She has no voice, but I do. Her nurse is a treasure. She hugged me and told me that Ivy has been through more in her short life than any one of these doctors have ever been through. She told me that we needed to demand that they up her medications and get her comfortable. Right now all they were using was what the ordinary 8 kilo child would need. But Ivy is not an 8 kilo baby, she is an 8 kilo toddler who has been a survivor all her life. She needs the sedation of a 13 year old boy!!! Yesterday I was promised that they understood that and that I need not worry. She was asleep when I left her last night. I do not usually leave her at 9pm but last night I did because she was OUT and I had nothing left, I was exhausted! I woke up at 4 and was back here before 5am. She had been awake like this all night. I had to lay on her to keep her from doing a back bend, this is not how I should be greeting her when I come in. This is not what I had expected to see. And I sobbed! Sobbed for my daughter who should be asleep and resting. 
The nurse reminded me that I am mom and I can talk to the doctors at any time. She reminded me that what I was feeling and thinking were very valid and the doctors needed to hear it.
So what was I thinking..... Besides what a cry baby I was being? Well, I was told yesterday that Ivy's lungs were indeed wet and not all open, but that it was not her lungs that were the problem, it was her heart. Ivy has a temporary pacemaker and it has been on her for 11 days. It is not working right any more, they usually change out the leads after a week and hers have not been changed. I was told yesterday that she will for sure need a pacemaker. So if it is not her lungs then why the vent?? And if she needs the pacemaker then why not put it in now. You need to be intubated for that surgery and she is intubated now so why not now? Her lungs are not working right because her heart is not working right... so can we please get her heart working right so that her lungs can do their job too? I realize that optimal timing would be when her lungs are at their best. Ivy is strong, she is a fighter, her lungs could handle the surgery, her lungs survived on 40% oxygen for a long time! Her creator created her so very special! I'm not a doctor, I'm probably clueless on everything I am thinking and saying. But rounds are in an hour or so and I am going to share my thoughts today and see what is the next step for my sweet child. After all, God made me her mommy to love and protect her. I can't just sit here and cry. Im done crying, It's time to put my big girl panties back on, its time to speak up.

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

I just finished with the doctors. I learned that Ivy was actually being given the sedation of what they would give ME to totally knock me out! And now they have upped it and she is sleeping. She is getting what a 200 pound man would get, that scared me!!! But they assured me that just the fact that she can push and pull and move while sedated is fabulous and she will recover quicker because she has been moving. Thank you Jesus!!! They agree, get her off the vent. But not just yet. They are taking her for a more detailed look at the diaphragm. Remember it showed a nick on the ultra sound but they were confident it would heal on its own. They want to make sure it isn't bigger than a nick...
After that, they will make a new plan. The new plan may be to extubate. My cardiologist wants to plan for the pacemaker on Monday. He is still holding on to hope that she will not need this metal box for the rest of her life. I choose to hold on to that hope too. Thank you again for lifting us up!

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42 comments:

Teresa said...

You are the best advocate in the world for your baby girl and the doctors need to hear your concerns!! As a mom and a nurse I agree, if she needs the pacemaker put in and she is stable for surgery then lets get it in and get your sweet baby girl one step closer to going home!! We will be flooding heavens gates with prayers for Ivy, her family and medical team today!!! Hugs to you from Indiana!!!

Amy said...

Hugs, love and prayer for all of you. You get to cry all you need even with your big girl panties on :)

Anonymous said...

Mary,

I am so sorry for what you and your darling Ivy Joy are going through and can only imagine how heart wrenching it must be to have to see her struggling. One thing though, I know, my heart baby (Hadley, now 8) is like yours STRONGER than anyone ever imagined and with Ivy's strength and your voice, you will get through this. Our family is praying for you daily and although we are strangers to you, I hope you can feel our support from afar. Best, Antinette Mama to Hadley

Anonymous said...

we need to cry to let it all out ,talk to our heavenly Father get those doctors and talk to them sweet Ivy needs more ! as ever in prayer,Cathy in Illinois

Kat said...

Mary, I have followed your amazing journey to Ivy and been praying for you, Ivy and your entire family. What a truly life-changing experience for all of you and I wish you only happy peaceful days from here on out. I just wanted to let you know I, at 64 years old, have had a pacemaker for over 10 years and once it was implanted, the only time I think about it is when they call me with the results of checking it wi-fi. I know an adult pacemaker is not totally the same with children, and I too fought having it implanted, but each day I live I am truly thankful and grateful for this gift. Otherwise, I would not be here. You have so much to worry about that I hope I can give you just a little sense of peace. Have a blessed Good Friday.

Kristy said...

Mary!! My heart is breaking with you! We are praying continuiously! Sending as much love as a computer can pass on!!
Love, Kristy

Anonymous said...

Oh Mary....this post breaks my heart for you and for sweet Ivy, I would have been wild finding my child that way after having been reassured she would sleep. I had tears as I read this because I could only imagine how you felt finding her this way and how she must have felt. You an amazing Mom and the best advocate Ivy could have. I am glad to see the doctors heard your voice this morning and were willing to listen to your concerns. You, Sweet Ivy and your family are in our thoughts and prayers and will continue to be as she travels this road.
Hugs from Ontario, Canada

Anonymous said...

Oh sweet Mary,
I'm sorry just doesn't even seem adequate! I know it has to be excruciating seeing Ivy suffering like this and not be able to make it better instantly! We are praying for God to comfort her and you and for answers and a plan for the Dr's!! She is also on our church's prayer list at All Saint's Episcopal here in Atlanta!
Much love,
Kendall

Shawn said...

I am reading this through tears but am amazed at how strong you are and how strong Ivy Joy is. Our Lord is stronger than all of us and he has this in His hands! I'm praying for Ivy and your family constantly!
Hugs to you from So Cal.

my3 kids said...

Oh Mary you are one amazing mama..you may not think you are strong but your strength shines like the brightest moon. We continue to pray for your whole family and for sweet baby Ivy..she is one strong amazing little girl and she will get through this!!!
{hugs}
Janice

KeithJonesBlog said...

Oh, my heart just breaks for you guys and for precious little Ivy! Praying for all of you!

Paige said...

Oh Mary, my mommy heart is breaking for you!!! I just cannot imagine!!! Please know we are praying for your sweet girl!!!

Lee and Sarah VanGrunsven said...

:*( Mary this breaks my heart for you! I can't imagine the pain you must have felt coming in and seeing Ivy like that. My heart breaks for little Miss Ivy too!

I'm very glad you talked to the doctors and used your voice! My husbands closest friend is a Doctor and he has told Lee on several occasions they appreciate patients questions, thoughts etc...They deal with so much on a daily basis that sometimes they miss small things!

Love you friend, Love to Ivy and continual prayers!

Luciana said...

Strong Mommy for a strong Baby. xo

Anonymous said...

Oh Mary, I so feel your pain. I, too, had what I fondly refer to as my Shirley Maclaine (Terms of Endearment) moment where I accused the nursing staff of trying to overdose my baby! Not a shining moment! But it was born of a desire to make things all better for my baby girl. They, of course, understood. Ivy is blessed to have a Mommy who loves her so. Let the tears flow. This is tough and will change you from the inside out and in ways that have not manifested yet. Praying for God's continued intervention and healing.

Suzanne said...

Good job, Mama!! Holding you and Ivy close in prayer.

Danny and Julie said...

Mary,
I have been reading your blog for just a couple of weeks now and I check it everyday hoping to get an update. You give me such strength-not that it's a comfort to you now, but you do. And so does your precious Ivy Joy! Our beautiful china girl, Olivia, is a single ventricle heart baby and we too will soon be in the world of heart surgery-most likely this fall.
We are blessed to have these angels in our lives. Ivy Joy is such a beautiful little girl and SUCH a fighter and inspiration!! I just wanted you to know that we are praying for your entire family, especially for you-from mom to mom-and for that sweet Ivy Joy! His hand is on her-that is so clear!

Julie Mann

sierrasmom said...

You are an awesome Mom...God knew exactly what He was doing when he chose YOU to be her Mama!!! You are her best advocate and one who will work tirelessly for her. And when it gets too much He is there for you to cry on his shoulder...but so are all of us!!! Continuing to pray for Ivy Joy in New York!!!
Kathie

Anonymous said...

Oh my heart just broke with every word you typed. If I could hug you, I would right now. Stay strong and it will get better. Just stay strong my friend. (((hugs)))

Sharyn

Anonymous said...

I keep forgetting to ask- H ow is Lexi doing with all of this? I am sure it is VERY hard on her too having her mom gone so much. I am praying for a happy and peaceful Easter for you and your family.

Sharyn

Yvette said...

NOTHING and I mean NOTHIGN is more heartwretching to see is a child crying while intubated BUT the first thing I have to say is Go IVY GO! The crying and fighting will actually clear out her lungs. THat fight is what kept her alive and will heal her. Praying

ashley said...

I find myself praying for Ivy, and you, and your family day and night. My heart just hurts for all she has endured. She is so brave and courageous and so are you. May God pour down His blessings on Ivy this holy weekend.

John G. said...

Wow, what a gut renching post. I lost it with you and cried. My heart goes out to you during this time. I am so sorry you and Ivy have to go through this. It is so hard to watch and feel like there is nothing you can do. I am grateful you spoke up and let them know what was on your mind. You are MOM, you know best. Just because you aren't a doctor, doesn't mean you don't know what is best for Ivy.

We are praying for you and sweet Ivy.

Stay strong Mary!

Hugs and prayers from CT.
Caroline

Terri said...

I'm so sorry little Miss Ivy is having to go through this and that you are too. What a fighter you have and she will come out of that hospital with gloves on! =)

Carmen said...

It is so hard reading this, I can't imagine living it. I am on my knees praying for your strength, the wisdom of the doctors, and a miraculous healing for Ivy.

K said...

My heart goes out to you and Ivy that she was treated this way when there was a better alternative. I'm glad you had the support of your nurse and, most of all, God's help in strengthening you so that you could better advocate for your daughter.

I hope that a good solution is found and that she will not require a pacemaker in the long-term, but if it is needed, that it start her on a straight road to recovery.

Martha @ Berrybliz said...

Praying for you and Ivy Joy

Kristi said...

Have you thought about hiring a patient advocate? There people you can hire who will advocate for Ivy during all those times that you can't be there, or times you just need someone else to help you stay on top of everything. If you don't want to hire someone, maybe you can have a close friend who can help you manage things and maybe be there during these critical days while you get some much-needed sleep.

I'm sorry it was a bad day.

Catherine said...

No words....just prayers and tears for you.

Bless all of you.

the meaklims said...

I can't even imagine what your mothers heart is going through right now, you are valid on every level. Be sure to cry, becasue yes, you are human and you are terrified, and you are watching your beautiful girl go through more than anyone should go through in a lifetime, never mind her short little life.

I too have tears, thinking about what she is going through.

Praying for you and your strong strong girl. Never forget that at all times, she has a guardian angel watching over her. Every second of every day.

Huge hugs, Jill.

Kristi said...

Go Mama Bear go!! U r doing EXACTLY what Ivy needs!! Praying, asking questions, and advocating. U rock Mary!! Still praying for beautiful, sweet, special Ivy!!

Sharon Ankerich said...

I am crying right along with you! I will go to sleep tonight praying for you all! Love and blessings!!! XOXO

One Happy Mama said...

Mary I can't even begin to imagine what you are going through. Be strong, for Ivy, she needs you.

Renee said...

Mary
I had to check back in tonight before going to sleep. I read your post this morning and started to pray.
I'm glad you were able to talk with Ivy's doctor and Ivy is now resting.
I'm praying for her to rest well tonight, her lungs to grow stronger & clearer and for her heart to adjust to everything. And we're praying for you and your family... rest in the Lord's arms tonight.. God's got everything under control.

Sue Lucas said...

You keep on fighting little Ivy and Mom you keep on fighting right by her side.I pray for strength for you and Ivy Joy !! I can not even imagine what this does to your mothers heart to see what they had done to her !! Spiritual boxing gloves are indeed the gear for today,for you and that precious little Ivy Joy !!Prayers and tears.

Jen said...

I can't imagine what you are going through, but I will be praying often for you guys. You are doing great advocating for that sweet girl. I am so ready for you to be able to hold her. Your daughter is so brave! Such a fighter. You keep fighting, too!

Elaine said...

I've been following your blog but this is the 1st time I've left a comment. I just wanted to let you know that we are praying for you! Know that you are doing a GREAT job as a mommy and advocate for your sweet Ivy Joy. As a mom to 3 heart girls from China inc. 2 single ventricles (who've had a combined 5 OHS since joining our family), don't forget you can always ask to speak to the Attending in charge on any shift. I found that sometimes the residents/fellows, as well meaning as they were, just didn't make the best decisions for my girls. Sometimes I just had to respectfully ask for the attending and plead my case with them. I wish I was there to hug you:) I'm praying you'll feel the Lord's arms around you today!

DiJo said...

Mary,
There is a reason that last August when I was in China you emailed me a picture of this beautiful little girl with a very broken heart.. A little girl that needed to get home quickly.. A little girl that waited for a very brave and beautiful Mama to do everything in her power to expedite her home! There is a reason that this adoption was finalized on Valentine's Day.. There is a reason that God chose YOU to love her, protect her, advocate for her, and even to weep for her!! Because He KNEW you could do it!!!!! There is no one else on this planet that could love Ivy to the depths of her toes like you do... Because of that she is going to survive this... And, she is going to prove to everyone that God brings beauty and blessings in every trial!!! I am so thankful you had a good cry... You needed it!! And, you are right.. Today is a new day, and God will continue to give you strength and clarity! You are the team Captain of Team Ivy!!! She is so blessed to have you on her side! We will continue to pray for God's perfect healing for Ivy Joy! And we will continue to pray that when you fell weary, that He will pick you up!

We love you in MN!
Di

Wife of the Prez said...

Mary, you know her best. Keep fighting and asking questions. I LOVE that nurse!

Still praying! GO IVY GO!!!

Anonymous said...

I have been following your blog since you went to China to get little Ivy, and have been praying for her and for you every night. I can't begin to imagine how hard it is to see your little girl going through something so awful, and hope that she will be healthy and strong very soon. Thank God that we can not remember pain, she will not remember that part of this ordeal, but she will remember that her Mommy was there with her through it all.
Frankie, mom to two healthy little girls from Vietnam and China, and thanking God for that every day!

Annie said...

Dear Mary, Please forgive me as I catch up over the past few days. We brought Katie Grace home from the hospital and I have been busy getting her settled in at home. I also thought Ivy was off the vent and I see she was back on and now off. This post brings back that melty feeling in my stomach. When Katie Grace would fight her way out of sedation and look at me and tears would run down her face and she would pull at her restraints and try to reach for the tube. They would be amazed that she would come out of sedation,and I would say, "you don't know who this is! She will fight her way out of the deepest sedation to get to mama! Her life has been fighting and she will never let anything keep her away from me! Help her!" Oh Lord, I know how you are feeling. I will just say, that she is on the mend. Some set backs emotionally, but so sweet and strong! You will see, I promise!

pcrc22 said...

I am following your Ivy's story and always praying for her and giving thanks for the strength God has given her. She is touching our lives in so many ways. My 11 year old, 7 year old (both from China), and I pray for Ivy together. Thanks for sharing her story! Continued thoughts and prayers from Youngstown, Ohio!!
Pam

 
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