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Sunday, April 1, 2012

Love, Grace and Hope

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We had a very long day today.
Lots of discomfort for our little Empress and a collapsed lung kept us on our toes all day. The collapsed lung was addressed aggressively all night and morning and early this morning she was put on a cpap mask blowing out 10 liters of oxygen per minute. That's a lot of air, and Ivy can't stand it! She does not understand why I am not taking it off of her. She squeaks like a puppy when she tries to cry and she even took my hand and put it on the mask as if to say, "since you can't understand me, let me show you!"I could go on forever about how painful it is to see her like this, but that would be selfish for it is Ivy who truly knows what painful feels like right now.
 When the doctors and nurses did their rounds the doctor said that Ivy could not stay on the cpap at 10 liters for much longer. It would cause air to get in her belly and would leave us addressing even more problems. He told the nurses to order a 2pm x ray and if her lungs did not show improvement then she would need to be put back on the ventilator. If the lung showed improvement, they could gradually wean her from the cpap mask that they switched her to this morning, back to the cannula.
 She can not sleep, has not slept all day! No medication works, she just thrashes about and whimpers and it is absolutely heartbreaking! She is so very thirsty! Her mouth is constantly open under the mask, just frantically searching for liquid. When she sees the syringe that the nurses are getting ready to put in one of her lines she grabs for it with an open mouth. I have never had to watch one of my children in such discomfort, it is the hardest thing you can imagine. At 2pm she had her chest x ray. The portable unit comes right to her room and the picture prints out immediately. The nurse smiled a huge smile and said there was improvement!!! Praises be to God!! I begged Him for this. He loves Ivy even more than I and that's a whole lot of love!!
Gradually throughout the day they began reducing her flows and pressure and by tonight she is down to 6 instead of 10. Our hope is that she can be put back on the cannula tomorrow. That would make her sooooo much happier!!! She would be able to have a wet washcloth to put in her mouth and she would be so much more comfortable without the huge mask pack that is on her right now. She might also be able to sleep better without all that air blowing her away. The doctor checking on her today said nobody could sleep with that blowing at them!
8 pm tonight marks one week since she has had anything to eat or drink. Her lips are like concrete and tonights nurse told me I couldn't put chapstick or anything on them because it might affect the mask suction. The suction is under her eyes and at her chin? ? ? Then she said that she could not have her little peppermint stick after her suctioning when the mask comes off for a few minutes. Why I said?? Because her numbers might drop too low off the mask. Well that is true and I know she knows best, but let me just tell you.... that hit me hard. I just wanted to break down and throw a little temper tantrum, kick and scream and cry and see if it would make me feel better. It was like telling me to sit down and then pulling the chair out from under me right as I sat. Knowing that she would have her little peppermint sponge on a stick to suckle after her suctioning was what got me through seeing her little baby bird like mouth pleading for something, anything during that short time the mask was off. The suctioning gave them very little fluid. This is great. The lungs sound so much better tonight! Answered prayer. God's hand for sure! And here it is not even 10 pm and I have been sent to bed by my night nurse. She assured me that my little miracle would be very well cared for while she slept (if she sleeps) and that I needed to get some rest myself. I am willingly headed to bed now!! Because she needs me to be healthy and rested and 100% ready to care for her tomorrow.  I will not forget however, the look in her beautiful eyes, the open mouth dying of thirst, can you imagine? I picture Jesus on the cross right now, all he suffered for OUR sins, all that pain and all those wounds. He did that willingly! He did that for US! Yes He loves us, oh how he loves us so!!!! Ivy will get through this, tomorrow is another day and another milestone will be met. How awesome that her miracles are happening this week of Easter! How awesome that we will get to spend Easter here at the hospital where all the miracles of Ivy Joy are taking place! Our children don't care where we celebrate the resurrection of Christ, they just want their sister to be with us, AND SHE WILL BE!!!!! Pin It


Trumbullfamily said...

A Poem For My Baby Ivy

Behind your Scar
By Stephanie Husted

Sometimes I have those. “moments”,
When I think…life’s just not fair,
Then I think of all you’ve been through,
And I see the scar you bear.

... A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?

And so I trace that “perfect” scar,
Made with the utmost care, And I realize there is purpose, Behind this scar you wear.

What have you taught us? You’ve taught us how to face a storm, (Some things are just out of our hands)
Life has no handy guidebook, (Things don’t always go as you’ve planned)

People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, “Wow God”, We just never know what lies in store.

If I can place a feeding tube, Without even getting distraught, Perhaps, maybe, I might be… Much stronger than I thought.

It’s okay to be afraid,
And it’s alright to cry,
It’s okay to feel lost sometimes,
It’s even okay to ask…why?

You face life with courage, (Knowing God set you apart) Every little thing you do,
You do with all of your heart.

No crystal ball exists for us,
(To see us through each strife) We only have one wish for you…
An ordinary life.

You’ve taught us to love one another,
(Helping each other to cope)
You’ve taught us compassion for others,
You’ve taught us to never lose hope.

You already have quite a story, Which you can someday share, And I can see it’s beauty, Behind that scar you wear.

I love you Baby Girl

Auntie Kim

Karen said...

Mary, I am praying for your sweet Iy and for you! Thanks for the updates.. I check facebook daily for them. Love you, Karen R

Curt, Pam, Ryan and Carissa said...

Been praying for little Ivy's lung to improve all day and the Lord has worked another miracle. Praying she has more improvement overnight and she can finally have a little moisture on those precious little lips. Praying for stamina for you as well. What a story she will have to tell some day!!

connie said...

We are praying for Ivy! I'm imagining all the precious rocking chair time Mama and Ivy have to make up very soon!!!

Diane said...


Teresa said...

Praying that beautiful Ivy has a wonderful day today!! Hoping the nurses will allow her to have at least a little oral care today that will give her little lips and mouth some moisture. I also agree with Connie, you are gonna have lots of cuddling and rocking chair time in the very near future with your baby girl!!!

Paige said...

Oh Mary, I am praying for sweet Ivy and you all. I cannot imagine how difficult this is. Praise God that har lungs are improving!

DiJo said...

Hey Friend!
What a beautiful poem Kim shared.. I know yesterday was so incredibly hard.. Today is a new day and I am praying for a peaceful one for you and your baby girl. And, I am going to be praying specifically for her to have that washcloth back, and some chap stick!! I just received an email with this verse... "When I am weak, He is strong!" ~2Corinthians 12:10b I hope it encourages you.. Lean on Him to get you through this.. And, of course a little chocolate will help too!!! :)
It's Easter week!! And, Ivy is in the hands of the one who died and rose again for her!

jennifer said...

Oh wow...I don't even have words. My heart aches for you having to watch her like that...Thank you, Jesus for healing sweet Ivy. Thank You that your mercies are new every morning. Thank You for keeping Mary strong and healthy to be able to care for her sweet baby. Prayers are constantly being send up from south Louisiana!!

Sharon Ankerich said...

I can SO remember SJ's eyes pleading with me and there was nothing I could do. I know your pain for her is unbearable~ only God can strengthen you. Even this does nothing to help you watch her go through this but the saving grace is she will NOT remember any of it. And I can say, this huge experience will completely bond her to you and your attachment will be the strongest it could be. YOU are there when she opens her eyes, YOUR face is touching her face, YOU breath is blowing onto her skin, YOUR kisses are covering all day and long into the night, YOUR love is healing her from the inside out. I pray God's richest blessings for you all today!!! Praying miracles keep coming!!! I love you sweet friend!!! XOXO

Renee said...

We're praying for you all right now. I understand the helplessness a mother feels when she watches her baby recovering from surgery. But remember you are not alone. God is there...lifting you up.

The image of Peter stepping out of that boat walking on those stormy waves straight to Jesus comes to my mind this morning as I'm praying for your family....just when he started to sink... Jesus stretched out His hand and lifted Peter up.

You and your husband walked out into the unknown straight to beautiful Ivy and though right now things look stormy...Jesus is standing right there with His hand outstretched to lift you all up.
And I see Ivy safely cradled up close to His heart with the other hand.

Praying for Ivy to get off the CPAP and to be able to have her washcloth or better yet some ice chips.. and you to have rest and strength to endure.

" The Lord will perfect that which concerns me; Your mercy, O Lord endures forever..." Psalm 138:8

Anonymous said...

Poor baby and mommy! I know you will soon be able to hold and give your sweet baby drinks. You are covered with all of our prayers. God is SO good!!!

Maggie said...

Continuing to pray for sweet Ivy Joy, I know she is so, so thirsty....but praise God that she has come so far. Mary, I am praying for you ....while Ivy's heart is healing, I know how hard it is for you...there are so many times that yours is breaking. May God heal both of you perfectly.

Martha @ Berrybliz said...

I am still praying and reposting to facebook so that my prayer warrior friends will pray too. blessings to you and yours...

Kristi said...

My heart absolutely broke reading this. I hope you have someone caring for you too. Your sweet girl needs you! I'm glad the nurse sent you home to sleep.

Today is a new day . . . I hope it's a better one for you all.

Kim said...

My heart aches for what sweet little Ivy is going through! Today is a new day filled with new HOPE. Continuing to keep all lifted in prayer and that God will give you strength and His peace. He holds you in His hands and to Him be all the glory.

Catherine said...

Poor little Ivy Joy! 10 is so high!! I wear a CPAP at night and it's set at 13 and that took me weeks to get used to. I cannot imagine your sweet baby suddenly being at 10! I know it's best but oh how hard on all of you. So thankful that she was back to 6 by the time you left and hopefully today will be moved to a nose cannula. ((hugs)) to all of you and praying for you often.

bytheriver said...

Hi Mary - yes, my husband is a lot bigger than little IVY but he cannot sleep without his CPAP at 10.

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