Ask, and you shall receive!

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Anything you ask for in prayer!

 As you can see, she has lost quite a few accessories in one short morning! What a day it has been!!!
I walked in to her room as usual this morning, but later than normal. I overslept and did not get to her room until 8am.
I did what I always do. Dropped my bag off. Washed my hands. Turned on the lights. Walked to the bed and kissed her head, held her hands and said good morning tiny miracle!
And she opened her eyes!! She looked at me for a few seconds, then around the room, then back at me. I began to talk to her. She shook her head NO to everything I said. You've been such a sleepy girl. NO
You are my brave little hero. NO
I love you so much and I missed you so much. NO
Laughing, crying, just overjoyed, I squeezed my tiny little miracle as long as I could and called the nurse.
Things began to move quickly. Ivy pulled off the Bi Pap mask. She was very graceful about it. It was big, annoying and oh so unsightly, so she just carefully removed it. Standing in awe as the doctors and other nurses came around to see Sleeping beauty had come back to us, her oxygen saturation only dropped to the high 80's, low 90's. So Respiratory came and skipped right passed the High Flow one would normally step down to, and went right to regular oxygen. They started her at 2 liters and then wanted to see just how amazing she was, dropped it to 1 liter and she remained at 99-100% saturation! Cheers began and cheers continue!!!
Next she had some lines removed. She had not needed them for a while but since no one really understood why she still was not waking up, they left them in, just in case. Out they came!!
She asked for water so we tried some. She drank way too much way too fast and choked a little. She asked for more so we took it slower. I asked her if she wanted to eat and she nodded NO.
She had a bath and got fresh clothes and even went for a ride in the go cart. She was not impressed with her walk, or all the people saying hello or even her mommy to be honest. She is not happy about all the junk on her arms and face and she is still in quite a fog. She knows what is going on basically, but she seems very dizzy still and very very tired obviously. We had a good amount of awake time, took a nap and then mommy got hold her baby girl!!

She had been rejecting me all day (totally a normal thing) and nodding NO when asked if she wanted me to hold her. But suddenly she decided to forgive me for all of this and she gave me some holding time. 

We ordered her some mac n cheese upon her request and she ate a great amount of it. She usually takes forever to chew and eat but today she just gobbled it up! She has a working heart now!! Lot's of things will come easier to her now!

 Her little body is so tiny and her legs have hanging skin from all the lack of muscle and fat. I have no doubt that will be a thing of the past in no time!~

The fluffy socks were requested by the nurses who always stop in her room to see her. We were happy to oblige!

 This picture gives you an idea of just what a bitty thing she is. My hand size in gloves is small... He feet are just adorable! Sorry for all the pictures but remember this is my documentation of the life of the girls and all that Ivy has been through and overcome. I think she should see this some day :)

It was a very busy morning so mommy put the do not disturb sign on the door and closed it! Leave this baby alone!

Thank you Team Ivy for asking!!! We indeed have received!!

Thank you Father in heaven for this family I am so unworthy of.  Thank you for carrying me through every day of this beautiful journey! Amen Pin It

Finding Joy in my weakness

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I was thinking today about my day yesterday and how much I was blessed by over 100 written prayers, over 75 emails and what I am sure was and still is, thousands of silent prayers around the globe. It is amazing what a little extra prayer support can do. I am renewed and I am waiting on the Lord.   

I spent much of today glued to Little Ivy. Talking to her, reading to her, singing to her, putting lotion on her, combing her hair and getting all those tangles out of the back of her head. I also took a 2 hour walk in to Brookline and through some parks. It was food for my soul just out in the fresh air, me and God. I walk to the hospital in the morning and home at night and since Ivy has been sleeping, I have been taking walks every afternoon. But todays walk was special. I wandered off and walked farther than I had ever felt comfortable, and yet I was very comfortable. 

As I was walking I was repeating over and over  2 Corinthians 12:9  My gracious favor is all you need. My power works best in your weakness. 

When we are weak and suffering and in need (me yesterday) Gods power is there. In fact, his strength finds it's full scope in our weakness. Today, I can see clearly, it was a gift from God to be in that weak state. 

It's so easy to find our own coping mechanisms without even realizing it. 

I read a book recently that had a quote from an old pastor. It said, It takes our weakness to become aware of our need for His strength. And it is our weakness that shows His strength in us! 

Therefore, when we are weak, we are really strong and mighty and powerful because God's strength is revealed in us. 

Wow, how humbling that yesterday was actually what I needed.

All that I am able to handle and endure is because of Him. All because of His grace and never shaken love! He is the powerful one, He is the Mighty one, and while this journey endures, His grace endures as well! 

Many comment on my strength through all of this. My strength is God's rival. It covers His work. But my weakness is his servant, it allows His power to shine through!!!

Love and Joy from Mary and Sleepy in Boston! (Yes, She is still sleeping) 

Answers to comments
 Ivy does not have any kind of patch. 
I have played many videos of her sisters talking to her, she does not respond yet.
Yes, the drugs she is overdosed on is Adivan and Versed. She will not be able to get them in a drip any more. 
No I do not believe her first surgery was in vain. It brought her to the next part of her journey. Gods plan is never in vain, He loves his children more than we do. Remember when Paul begged Jesus to take away the thorn and the pain. But the Lord did not take away the thorn.
He gave paul grace for the pain. And He gave Paul the reason the thorn would remain. For my power is made perfect in weakness. Jesus has a higher purpose for our lives than we can ever imagine. He wants us to have a power filled existence. Even a tiny girl like Ivy can be used in might big ways by the one who created her for His purpose. And they say Ivy is lucky, Oh they have no idea how special this child is!

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Happy Halloween

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Even if just for a for a moment

To see your eyes, is water for my thirst!

The sleep continues but along with a mermaid sighting on the 8th floor, there was also a sighting of two big brown eyes! She opened her eyes for a few seconds, made eye contact with me and reached out her arms to me! Poor me a river, I flooded with tears of Joy!!!!

As soon as I had her in a pretend hold due to too many lines still, she was fast asleep again. She peeked her eyes open a few more times for a few more seconds, a total of 4 times throughout the day/night.

Her nurse encouraged me to get a picture of her in her costume and was so incredibly sweet to help me get it on her. And the whole unit went nuts!!!

She is a pretty cute little mermaid! 

Answered prayers all day!

I have been filled with peace and comfort. 

My Rock held me tall and strong all day!

And Ivy shows no signs of having any permanent neurological damage according to the evaluation.

They saw no need to order any scans.

They have diagnosed this as much like overdose. She is detoxing. Nothing done wrong, just the residual drugs sitting in her little body for so long have left her lifeless. 

She had two big surgeries in 3 days. One of those surgeries took 15 hours so really she was less than 48 hours post op at the time of surgery two.

She was sedated and kept sedated for the long Heart Cath just 2 days prior to that!

And she has had methadone, adivan and ketemine pumped in to her blood over and over and over for  so many days. And we knew all of this, but Ivy's case is not by the book by any means, the kids always wake up and she just has not. She had more than mommy wigging out :)

P.S, to the friend who commented about the adivan. She was taken off all meds a few days prior. But is indeed the 3 medications.  Overdose symptoms may include extreme drowsiness, confusion, muscle weakness, fainting, or coma.

So to help her along.

She needs to pee! And that she did today!

She needs to have a bowel movement, praise God, she did that today!

She needs to repeat that. A lot. And it needs to work its way out of her. 

Is this normal?

No. The doctors said they see it, but certainly not in baby off drugs and for this long. And by tonight, with her still asleep, no, not normal.

And certainly not normal to not respond to the counteractive medicines.

And that is why the doctors were very concerned this morning. 

And tonight, everyone is still being very very mindful of everything going on with Ivy. There is always a full room. She has 2 nurses most of the time. A doctor seems to always be in here. Respiratory therapy. Her surgeon pops in twice a day. Her cardiologist, several times. 

It's busy. And I feel so grateful.

Her ECHO revealed her mitral valve still looks good. Left ventricular function, good!

Her Lung is still collapsed.

But we will get there!!! It will fill back up. When she wakes up and starts breathing on her own, it should start to fill. 

Back at home, Daddy and kids are doing great!!!

And I end this post with the most precious thing ever. The pumpkin my friend Chris carved with Ivy as the inspiration!

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Is there cause for concern

Pin It Yes, there is. 

Ivy has been asleep for a very long time. And while we had moments  seconds of what seemed like she was aware of her surroundings, nodding yes and no, even if for just a few seconds, today her eyes still wander when lifted open. She has a very invasive bi pap mask on that is blowing a hurricane in to her and she does not protest it or even reach for it. They say that the drugs are in her tissue and she could just need more time. However they were very quick to comply to my request of Neurology coming out to take a look at her. I'm so thankful that they include me in every decision and every plan. They never round without me, if I run to the restroom (there are none on in her unit), they wait, knowing I will be here. They always ask me if I have questions or concerns and they always spend as much time with me as I need.
She is getting an Echo right now, just to be sure all is well with her heart, and she will get a full eval from Neurology this afternoon. 
A music therapist came in today and played for her. Thank you Jen for setting that up!!! At PCH they use classical music as therapy for the healing process from day 1. Here they have no such thing. And PT and Child Life were in the room from day one too at PCH. Here we have not seen Child Life or any therapists at all and it's been 2 weeks. I think that is odd for the #1 hospital in the world, but we know they get that rating from the medical aspect. And it is well deserved!! 

Due to not breathing more than just shallow breaths (since she is in this deep sleep) her right lung has collapsed. It is a little better this morning, but still the bottom half is fully collapsed. 

Her body is not urinating on its own, she is requiring a cath again. She was without it for several days but after going all day Monday without making a wet diaper, they put the foley back in Monday night. 

She does move her arms and legs, she does turn her head. This happens every 3-4 hours for a few seconds, then back to sleep with no movement she goes. 

So my prayer requests today are obvious and desperate.

I have sobbed with a very heavy heart this morning. My little girl has been through so much. And she can't wake up to breathe on her own! I'm crying out to God today. I'm asking that He agree that she's been through enough. That He breathe life back in to her little body and reignite her spirit! That we see Ivy come back to us, today!  

My prayer request to all of your are obvious.
That Ivy would wake up.
That from a neurological view, there is no cause for alarm.
That God would continue to breath life in to her lung and her body.
And that God would continue to give me the strength that only He can provide. I have nothing left to give, but every day He makes me new again. I am empty at 1am as I lay my head on my pillow but at 5am I rise anew again. Filled with the strength to get through one more day. 

If you feel led to leave a comment today. I ask that you direct it towards what you will be praying for or towards Ivy. 
Today I just don't have the strength to read things like.. its going to be fine, you can do this, your strong...... 
Until you have sat right here in these very shoes in this very situation at this very moment...You have no idea. 

I will be in great prayer today and my faith will be renewed and I will be reminded that when I am weak He is strong. For faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

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The "Little Candy Corn" Update!!

Pin It Diana here, having the privilege to scribe for my friend Mary again.....  She wanted me to share that Ivy Joy was taken off the ventilator at 7:20pm and she has been sleeping since!  So many reasons to rejoice over this great news..  While we are giving thanks, let's put at the top of the list an astute and amazing nurse and a compassionate surgeon who truly cares about their special patient!!

Team Ivy - It's time to stand in the gap once again for our favorite patient!!!!!!  Ivy is struggling to wake up..  Partially due to the heavy meds she has been on!  There are two other tricky parts to this..  One her pace maker, and two her lungs...  Can we storm the gates of Heaven together to ask God to help Ivy get over these obstacles...  This baby has not had an easy go at it..  And, we are praying for the path to be cleared for her to HEAL!!!!!

Thank you for lifting up this amazing little girl..  And, don't forget her precious Mama too who is living this 24/7 and holding her breath for her tiny miracle to turn the corner towards a complete recovery!!!!

More soon!!!!

Blessings,
Diana
(For Mary) Pin It

A fright and a treat!

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It was a rocky start for Ivy today. 

She is not going to allow hurricane Sandy to steal all the attention around here!!!! We have been trying to wake the little pumpkin but you see, trying to wake her is like trying to get full without eating! It's a very fine line. She needs soooo much sedation to be fairly still therefore she still needs vent support. But if they let her get all squirmy, she gets agitated. She panics when she feels the vent breathing for her and this causes all her sats to go wild! That just haven't been able to come up with a happy medium yet. 

Then, we had a huge scare! And I mean huge!

Ivy's blood pressure dropped in to the TEENs, she stopped breathing, and she turned the color of used charcoal. I'm pretty calm about almost all the medical stuff, and I had to run to the bench behind her bed! I had never seen her looking like this before and it was a lot to take in!

I knew right away something was wrong.

I was holding her hand and rubbing her leg as she wiggled and stretched. She was still completely asleep. The nurse had just put her stomach medicine in her line and I noticed she got perfectly still all of a sudden.   I asked her if she paralyzed her again. She said no, that was her stomach medicine. 

I continued to watch her, we both did. She got stiffer and turned dark gray. Her blood pressure was 19, 18, 15, 13....

Before I even noticed, her nurse had pulled the phone from her pocket and made the emergency call. These nurses and doctors are so FAST! She made the call and I don't think I blinked twice and there were 3 doctors and several other medical staff around her bed. I have no idea where they came from! I guess since they were still doing rounds, the timing was right. Anyway, they put something in her line (calcium mag I think) and all waited. They said when you have 13 pumps pumping meds in you at all times, you can get an air bubble in the line and all her meds were collecting behind the bubble.  When the nurse flushed, and gave the stomach meds, it must have moved the bubble through and she got all that had collected at once. Morphine, Adevan, Versed, Ketemine.... all sedative type meds. This nurse is beside Ivy her entire 12 hr shift, she is really thorough and detail oriented. I was told by the floor doctor that this happens all the time, you just don't usually have it happen with a bunch of sedatives. And Ivy is quite small so it shook her up. 

And it sure shook me up!!! 

But she is fine now.

In fact the horror story ends with a huge treat!!! 
They just did an echo and Ivy's Mitral Valve Regurgitation looks far better than they had even expected! 
It looks so good they are going to try again to wean her and this time not worry so much about her LA pressure getting a little high as we wean. They can be sure now that is is caused by agitation and will go away as soon as she is off the ventilator! 

So we are coming off the morphine and versed and then we'll spend the rest of the day slowly coming down off the ventilator! 

Our Rock Star needs a break now!! Goodness! She just amazes me!

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Joy comes in the morning

Pin It Yesterday evening Ivy had her 3rd open heart surgery. Yes I know there are a lot of jaws being picked up off the floor right now.... But lets remember who we are talking about and how incredible she is!!
Ivy's mitral valve was not making her surgeon happy! Her Echo late yesterday revealed that the cleft was wide open again and just not holding the patch. When we got here, Ivy's MV regurg. was 10 (on a scale of 1-10). After the Boston repair the MV regurg. was 3-4. And yesterday, the echo revealed it was back to 10. They wasted NO time. Dr Baird, Dr Del Nido and Dr marx got together. They called some other members of the team in, and looked at all the data. They agreed that this was not acceptable and they asked for consent to go back in. Because they care!! They know that severe mitral valve regurg is not going to allow Ivy to thrive like we expect her to if untreated. They also do not settle for half (donkey) jobs here! They aim to repair what you have, but they were feeling like they may end up using a mechanical valve on Ivy due to the valves condition.
Bryan and I felt this was the right thing to do and had total peace about it. We felt the need to keep this step to ourselves as it was happening so quickly and we had so much going on with the family all leaving today. Ivy did fantastic in her surgery. She went on and came OFF bypass without a problem. She had hardly no bleeding. They used all the same lines and drains and she was already intubated. She came upstairs with her chest all closed up, minimal swelling and looking much like when she went down. Her regurgitation is now about a 2 and that is necessary because if she had no regurgitation on a patched valve, she would get stenosis. 
They did not use a mechanical valve. She is too tiny and they would have had to use one that she would quickly outgrow. Also it would be sure to get stenosis if they attempted to use a larger one. The were able to use a patch, more like a ring, that is actually tissue of the intestine. Her own tissue will grow right with it, and her body will absorb it as its own. They feel it was the right choice for the little jellybean and she is recovering beautifully tonight. They do not expect this to slow her recovery. In fact they feel she will get off the ventilator easier and recover quicker now. 
I knew you all were still praying. The peace we felt was proof. And the strength of our girl...... Just amazing!!!!!
Pictures soon. My family is leaving this morning (so sad) and I will have lots of upcoming boring days to post. I miss them already. And based on the craziness going on at their hotel last night, I think they might just miss me already too!!! And My baby Lexi..... not hearing her joyful self for weeks is going to be hard. But I'm getting pretty good at hard things I think. And all the fun ahead will get me through!!! Nat, Bryan, Chris, Jenna, Laurie..... please feel free to stop by and love on my sweet Lexi for me! Mrs. Richardson, .. Extra hugs at school please :)
Daddy is going to have a blast with his little pumpkin while I am gone. And big sisters and brother are too! Pumpkin Patch, Halloween, 3 year forever family day celebration are all coming up!!!! 
And Ivy Joy will be here, just getting strong as an ox over the next few weeks. I can't wait to post a video of her walking. She may just skip walking and run!!!!!!
Love to all!!!
Good night! Pin It