Happy Halloween

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!

Is there cause for concern

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

The "Little Candy Corn" Update!!

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)

We are still here

Everything is fine in room 22 this morning. 
We had a very busy day yesterday, Ivy had one more incident where she had the staff running circles around her. This time, she needed to be suctioned and could not exhale. So she started to de-sat, everything dropped like a rock again, and in the most calm fashion I have ever seen in my life, she was rescued! 

Mommy has aged many many years this past week. And as I look at the window of our time here, Cath on the 17th that proved to be more than our little girls heart could handle, Open heart on the 19th and then again on the 21st. Today is the 30th..... I say that's not to shabby for our little hero. Considering where she was the day we arrived, what they found and what they repaired... You can not even imagine the level of my excitement, my whole families excitement, when we spoke with our cardiologist, surgeon yesterday.

 Her heart looks soooooo good!!!!! It is not a perfect heart, Ivy's heart will always be special, but it is a heart that has hope!!! 
It works!! It has been repaired correctly. All the mistakes they found... and they revealed another one yesterday as they rolled their eyes at each other and said thank you for bringing her here, have been addressed!!!! She is a living, breathing, oh so treasured miracle!!! They were so happy to see that the mitral valve regurgitation that they had hoped would show to be mild to moderate, was mild!!!! Very mild as of now!!! 
So that brings me to this morning. We are going to attempt to get Ivy off the ventilator. They will do it during rounds (she will be the last patient) so they can all gather around her bed as they drop the pressure assistance and see how she does. When they stop her drip this morning she will wake up within 30 minutes and then the vent will be pulled. I don't know that I will be back to blog before tomorrow some time, so hang tight and remember her in your prayers.


Heres some love from the little candy corn pumpkin :)

A fright and a treat!

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!

A new day

I can't remember that last time I had 9 hours of sleep! Well I did last night and it was great!
I left the hospital with Ivy looking just like the picture I posted yesterday. She didn't even have her blankie because I was worried they wouldn't want it on the bed yet and I knew that if they while they were still cooling her, her blanket was not going to help with that!

This is what I came back to at 5:40am

Her nurse got in to her bags and found her accessories and dolls and primped her little patient

                    And it warmed my heart!

Last night they attempted to wean Ivy off her paralysis meds.
She did not do well. Her LA pressure and blood pressure scared her nurse and she put it back on and let her rest. There was talk of doing another echo, they ran blood gasses, they did an EKG, they requested another transfusion (she was at 30) and I was concerned. I sat beside her and kissed her head and read to her and kept my hand on her all morning. We just hung out.
And she was the very last patient for rounds today. So when they came, her LA pressure was the best they have ever seen on her. 10! It was 30 before they second surgery on her mitral valve. Her blood pressure is good, heart rate good, she is off the cooling blanket, no futters for over 2 days, blood gasses came back perfect, color looks great, one of three chest tubes is ready to come out, the other 2 will be in her for quite a bit more time, and her platelets are just a tad below normal but not low enough to need a transfusion right now! She is OFF all cardiac support!!!
And it was decided that she likes her mommy nearby when things get stressful so after this chest tube they are taking out right now is out, we will be taking her off her paralysis meds. The first step to waking her up!!!!! And we all agree that it will be much less frightening and much more tolerable if mommy is by her side. 
A big day for Ivy Joy!!!

Lord Jesus,
I praise you for the joy I have because I love you.
Thank you for the joy that comes from you and does not depend on my circumstances, because it is rooted in You.
Thank you for the assurance that no one can ever take away that joy. Even through crisis and in the midst of suffering, sorrow or pain, I can still look to you, filled with joy because you love me and abundantly meet all my needs!
Help me rejoice always. Not just today because the news is in my favor, but always because my hope lies in you.
Thank you for the peace that transcends all understanding.
I know I can do everything through you who gives me strength.
Amen

Added
For those of you who have been asking me to post the address again to send cards

Ivy Sammons
8th floor Cardiac ICU
Boston Children's Hospital
300 Longwood Avenue
Boston MA 02115

And when she moves to the regular floor, its still 8th floor Cardiac
And if it comes in between they will still find her and get it to us.

shhhh

We are fine :)
Nothing New.
I'm just getting a little rest and so is Ivy.
Yesterday when Ivy had to go in for surgery again, there was nothing leading up to it. I really was not being quiet due to problems, we just had a lot going on with the family leaving this morning and I wanted my focus on that.
Lexi made an adorable little 5 year old friend at the hotel pool and it made our goodbye very easy, very fast since she wanted to get back to playing. They were on the same shuttle to the airport together this morning and the girls told me Lexi ran right to her for a hug! God winks for sure!
And while there is some pacemaker adjusting, transfusions, and adjustments being made to Ivy's meds, she is asleep and peaceful and well taken care of! She has been out of the flutters for at least 24 hours. 
I am leaving here early tonight and heading to bed!! I'm so tired! I was doing good but last night just sucked the rest of the fuel out of me. A nice walk, a good dinner, a long shower, and a good night sleep are in my future!!! 

Joy comes in the morning

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!

The worlds BEST Adrenaline Rush!

Before I go in to all that needs to be shared of Ivy's surgery yesterday and the night she just had, I just want to take a minute to give the One who made her and has always protected her, ALL the glory!!!!!!!
There is one explanation for her survival, and that is ALL GOD!
Thank you prayer warriors who have fallen in love with our girl! Your tiny little jellybean Luciana! I think she has more people calling her ~theirs~ than anything I have ever witnessed! She is so worthy of all this love and respect! Thank you Father in heaven for blessing us all with the life of this precious child! We are all so anxious to watch you use her in big Huge, ways!!!

This is what a hero looks like. A heart warrior indeed! 2 times in 6 months. A whole life of fighting. A will to live that surpasses all understanding. A love that pierces! A child of God. Mighty and perfectly, wonderfully made.

Upon opening our girl and repairing the findings, much was found. The huge cleft in Ivy's mitral valve was not congenital. It was an inscision that happened by accident. The surgeon expected it to be the easiest part of the repair but when he went in to repair it he discovered that the flaps (leaflets) had been cut off too. So the repair consisted of creating new ones and attaching them and then closing the cleft. There is still a little regurgitation from this valve. But nothing that would require further repair. It is minor and it is something that one can live a normal long life with!
The tricuspid valve was patched and repaired. The flaps in that valve were accidentally sewn in to the patch. They took the patch off and attached a new one. One that is NOT sewn in to her precious little tricuspid valve! Her little flaps were set free and then repaired. The tricuspid is working perfectly now and has NO regurgitation! 
The Aorta..... We had no idea there was an issue with her Aorta. Again, a result of her Nikaidoh procedure. The way the Aorta was adhered, it had severe stenosis and was resulting in more of the heart failure she was experiencing. He replaced the whole aortic arch with a conduit. 
Both pulmonary arteries were a mess! Both!! We knew there was an issue with the Left, it was hypoplastic and he planned to address it. He ended up addressing both the right and left arteries!
 Ivy now has 2 brand new pulmonary artery valves.
Ivy's Homograft was not positioned properly and thus was leaking pretty drastically. He was able to save it, relocate it, and patch it with cow tissue. 
They moved on to the right coronary artery. They moved it and while it was flowing, it was not flowing as much as they had hoped. Ivy had been under a very long time and still needed to come off bypass in order to place her new pacemaker. The pacemaker she had from Phoenix surgery was in a far less than optimal place, it did not have the right leads and the leads were in the wrong place. Since they had done all they could do for the right coronary during her heart cath last week, it was time to work on the pacemaker. They took her off bypass and her blood pressure dropped drastically. We called on The Team and we thank you ALL for your fervent prayers!!! Ivy's heart just wasn't beating. They used the paddles, and put her back on bypass. 
Her surgeon just had a very strong suspicion  that this was rooting from the coronary artery. Just as he suspected put her on ECMO after her first surgery in Phoenix. So he went in with a scope and looked very closely. He was shocked at what he found. He found 2 stitches in the coronary artery!! When our Phoenix surgeon put in her homograft, he must have gotten too close to the RCA and he actually stitched it closed. My oh my am I biting my tongue right now...... All these kinks! All these mistakes.. How did they not know? Stitches?? Yes, baby girl has been through the ringer. And mommy will bite her tongue. You can also bet that the doctors here at Boston will be assiting me in finding a new team of doctors for Ivy back in Arizona. Because mommy can be calm and gracious, but mommy is not clueless! 
Dr Baird snipped the stitches and the RCA saw blood flow!!! We do not know what the future holds for this artery and the damage that may have been done by the stitches having been there. The artery was also repositioned during the Phoenix surgery and the doctors in Boston say that it was put in a terrible spot, way too high, but it is way too risky to try and relocate it again after all she had been through today. Praise be to God that she was not able to come off Bypass or they would have never found those stitches and her RCA would have slowly gone back to being completely occluded, thus leaving us grim hope for Ivy's life.
Praise to God for this wonderful man who wanted so bad to be sure he addressed every single issue with Ivy's heart all in one shot so that our little jellybean could have a REAL chance!!! Her RCA is now flowing!
It was soooooo late now and it was time to get that pacemaker in and those new leads on and get this baby out of the O.R. 
It took a long time for them to tell us she was off Bypass again and this mommy had a few melt downs waiting. I was preparing myself again for what might not be my plan and remembering all that this little girl had already accomplished in her short life. My mustard seed faith was shrinking without me even realizing it as I leaned on the changing table in the bathroom and had a good cry! Every person in the waiting room, all with kids who came in much later than our baby, all had been given the great news that their children were recovering in their rooms and they could see them soon. I asked, "why not our baby God"? She has been through so much. She has been through an earthly form of hell. This time was supposed to be different. And then I was reminded of the promises God made to me, and I to Him. Of all our special time chatting together in China as He prepared my heart, my soul and my mind for the days ahead with Ivy Joy. He equipped me for this. This is not strength of my own, I take no credit for that! In China, I told Him I would never regret how many days He gave me with Ivy Joy. I told Him I would be the best mom I could be for her and I would love her like He loves me! And he promised to never leave her to never forsake her! And He promised that whatever we had to go through, we would never, not for a minute, be alone.
And then Jessica, our nurse came to tell us that Ivy was off bypass and would be up in an hour or so!!! She would come up with an open chest and the doctor would be in to see us shortly after. Relief is the only word. No ECMO, our baby was ok!!!
Hours later we finally had our conference with the surgeon. This incredible man who took our baby, with a messed up chopped up, hardly functioning heart, and spent all day and night doing everything possible to make it right.
So grateful!
She is having a little flutter issue that they are using medication for right now. That heart has been through so much. Her pacer is the Mercedes of pacemakers and should be able to make that flutter less of a problem soon. 
Her swelling is already going down, she is peeing on her own, there is even talk of closing her chest as soon as tomorrow!!! 
She is on a cooling blanket. She will remain paralyzed and sedated for several days. She is soooooo beautiful even with all that graphic exposure! 

Believe, and you shall receive, anything you ask for in prayer. 
If it is God's will.... Step back and be prepared to see a miracle!!!!!!!!

Ivy Joy is in the house

Ivy came up to the ICU a few minutes ago and is getting all hooked up as I type. 
It will be another hour before we are allowed in the room. Her surgeon should be up to see us soon. I absolutely can't wait to hear what he has to say! We are getting a bit sleepy waiting and I am certain Ivy's surgeon feels 10 times worse! I can't wait to thank that man!! I will have lots to share in the morning. Thank you all my friends for what you have done today! I know you are all just as exhausted as I am!! But after all the stress of the day, we have quite a gift! A little girl who was given little hope, now has hope!!!! A chance!! And Jesus has big plans for that little girl. Big!!!

Thank you Jesus!

Update!!!
Ivy has been off Bypass for 20 minutes. It could be another hour or 2 before she comes up to the ICU and she is coming up with her chest open but she is off bypass! Thank you Jesus!! Thank you prayer warriors! Thank you Ivy Joy, mommy and daddy love you so big!!!!!!

URGENT - PLEASE PRAY FOR IVY JOY!!!!

Dear Team Ivy,

Ivy Joy needs all of her prayer warriors to get on their knees and to stand in the gap...

I just received this request from Mary...

"Ivy is still in surgery.  They got her body warmed back up and then off bypass.  Her blood pressure dropped drastically and she has been cooled back down and is back on the bypass machine."

It's been a VERY long day for Ivy Joy, for the family, and especially for the doctors.. They began at 7am this morning...

We KNOW God can do this..  Please pray in faith that he WILL!!!

THANK YOU Team Ivy!
Diana (For Mary)

5:15pm

Going on 10 hours. Still working on her. She is still doing well. Ivy Joy is a rock star and a super hero!!! I love you baby girl! Almost done <3 span="span">

12:40pm

Update 3
Working on the valves still
She continues to do well!!

Update 2

11:45,  Ivy continues to do well!

Surgery update 9am

She did amazing this morning! No tears!!!!! Slept until 20 minutes before taking her.
I was able to take her all the way to the O.R
Last words from doctors were
This is a huge surgery
Don't expect we will be done before 5pm
She will likely be kept asleep for 3 or more days to be sure there is no bleeding or issues with the coronary artery.
She is for sure getting a new pulmonary valve today added to the rest of the work.
We will take very good care of her!
God is good!

Surgery Today!

Surgery will be this morning, Wednesday October 24th.  
Ivy will be the first case of the day. 
We anticipate around 7am.
 I am planning to post updates here on the blog as we go through the day. 

Ivy was doing so good today. She had a bath, she got a whole bunch of mail, balloons and lollipops, cards and a whole classroom sent pictures! It was a good day!
And we continue to pray that tomorrow will mean even better days are ahead for Ivy Joy!! Days of running the halls without a wagon! Days filled with joy!!! 
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.Psalm 73:25

.

Family Time!

We had a long day today and it started out  sad for our sweet girl :( 
Ivy's veins are just non existent right now and after many pokes to get an IV in, they just don't last but a few hours! So she was stuck at 11 last night, again at 2 am and it went on until it was decided today that they will need to take her for a new picc line. Poor baby. I wish they could just wait until Wednesday and do it when she is under and going in for her surgery. She had a very long echo, an ultra sound, blood work, urine tests, dressing changes and so forth. She also has bleeding wounds where they removed the dressing from her cath sites! I was so disappointed when I saw this so I spoke with our ever so sweet nurses this afternoon and asked that we please put a sticker on Ivy's pajamas stating that she is extra sensitive and needs adhesive remover and extra care used every single time tape is removed from her. The nurse who came in to change her dressings this afternoon was so upset by the infected looking wounds that she has from the tape that she made stickers for everything. Her bed has a big sign, and it is in her charts and in the computers as well.  I hope this puts a stop to the unnecessary owies this poor baby has to deal with. 
The nurses are all so so sweet. And they are so good about the family all being here. 
Ivy was so sad and stoic all of yesterday and today. But late this afternoon we got her in the wagon and the entire family was a parade round and round the halls for an hour trying to cheer our girl up! It worked. She came out of her shell a tiny bit. She started talking, finally. She cracked some smiles and even some giggles. She ate and ate and ate and ate. And at a random moment while on her wagon ride she said, "Donut!......Me!!" And raised her hand! It was so stinkin cute!! As if someone had said, who wants a donut? I think she was tired of waiting for someone to ask, so she just did it herself! Needless to say, her daddy went running right to the store in search of a donut for the little princess! By the end of the day, even though she was still very far from being herself, she knew she was surrounded by people who are absolutely crazy in love with her! She is just so darned scared. She always has the saddest pouty face and scared eyes. She doesn't cry at all, just gets a pouty lip and tears! So heart breaking. I wish I had stories to tell you of all the fun we had today but I'm not going to sugar coat this into some fantasy. She's sad and scared and we are just here doing exactly what we came here to do. Surrounding her with love and familiar faces and lots and lots of kisses! That in itself has been a gift for us! A treat to spend our days with such a precious gem! JOY
 Love from Boston!

Ivy Joy Sunday Morning Update!!

Good Morning!  It's Diana here... I just received a text from Mary with the following update for "Team Ivy!"

I can't leave her side now.  But that's a good thing!  Just makes in nearly impossible to blog or update.  I have to hide my phone because phones are really not allowed bedside.

We had a busy night!  She was wide awake, eating chocolate kisses, drinking water, and I even got some sweet giggles.  Finally at about 12:30am she was ready for sleep.  I headed back to my room on the 5th floor and was just getting ready for bed myself when the nurse called me.  Ivy had thrown up and was asking for me.  I ran back to her room!  I was a sight for sore eyes in my Boston sweat pants, Team Ivy t-shirt, and GOLD ballet flats!!  Yep, they were the only shoes I had at the moment.  Not a fashion show here at Boston Children's!

Anyway, as we learned in April, Ivy's belly just does not tolerate the NG feeds.  She held down 8oz of water, 5 kisses, and some granola for about five hours.  But as soon as they started her NG feeds she vomited.  By 2am we had her cleaned up and settled and before long, sleeping again.  I went back to wash her beloved blankie that had been thrown up all over.  Why oh why did I not make her 2 of those blankies?  I actually ordered fabric from my laptop this morning at 4am and I am having it shipped to me at the hospital!  I will find a sewing machine to borrow too!!!!  Mom on a mission!  Look out!!

When I returned back to Ivy's room at 7:00am she had spiked a fever again.  I really think it is from the stress of getting sick, not having her blankie and just being scared.  She responded to Tylenol and has been fever free all morning.

Now on to the great news.  She is getting some of her lines out as I type.  We can then move her to 8 East until surgery Wednesday! That means she can play, and go for walks and EAT!!!  Our prayer request for today is that she can relax and be more herself for the next 3 days!  That she stays fever free.  That she eats and drinks.  And lastly that she can be the first surgery on Wednesday morning.  Because we know this tiny girl likes to eat and drink!!!!!

We love you all!

~Mary

Staph?

Well we have confirmation that Little miss has a Respiratory Staph Infection. Something not uncommon when putting a already sick child on the ventilator. She is weaned off her sedation meds now but still asleep. As soon as she wakes up they will remove the ventilator. And the fun will begin :) Surgery is on the books for Wednesday. We all know that that can still change but as for now, that is the plan.

       “Though she be but little, she is fierce!”

She's been asleep for 3 days!

We had an uneventful night. Ivy's color looks great though she is still really puffy! Probably just a side effect of heart failure. The plan is to get her off the ventilator some time today. Lots of you have asked how I am holding up. I really am doing great. Had another great sleep and great shower in the parent sleep suites. God is providing for every single need. Ivy has had 3 days of rest, the doctors have had 3 days to really think about and ponder on her case, her body has had antibiotics doing their thing since the fever appeared, and her right coronary artery has had 3 days to show us if its going to continue to allow blood flow, or not. She is on lots of heparin to help with that. This timing was Gods all along. Even highly ranked surgeons from Boston have to abide by Gods timing. And as you all know, our baby girl likes to keep everyone on their toes! We are so blessed!!

Count it all joy

Anyone who has followed my blog for a while knows that I have done quite a few posts about joy in the past year and thanks to a little girl named Ivy Joy, I have learned the true meaning of joy. The kind of joy God wants us to have is not a feeling of joy. It is not an emotion or a holiday wish. It is a choice. We can choose joy every single day! Just like love. You don't feel madly in love when you are picking up stinky socks or surrendering your afternoon picnic plans because the game is on, but we can choose love every day and we are commanded to do so. I beleive God meant the same for joy. In sickness and in health, for richer or poor, there is still joy! James 1 tells us to consider hard times a gift! Pain, sorrow, stress, a gift???
I am standing firmly on allowing this -joy- to make me the woman God is shaping me to be. Sturdy, strong, well developed, forgiving, compassionate. Oh how I would love to be a woman will all of those characteristics. Like in James 1:2-4
And yet the pain, sorrow, and stress we often have to endure to grow spiritually always seem to be what make me second guess myself. Am I strong enough to choose joy? With Ivy in my life, it is so much easier to choose joy, even now. Even when things take a turn for the worse even when things go a whole different way than I expected! Ivy chooses joy every day. She has to feel like a semi truck is sitting on her chest. She feels tired all of the time. She is poked and bothered regularly. She is often hungry but tires of eating and would rather just be hungry. She knows pain and suffering more deeply than I will ever comprehend. And yet she chooses joy every single day. She pops up in bed and calls for me. She knows I don't make her better but she chooses joy anyway.
Today Ivy surprised us with a fever and some pretty crazy blood pressure. It took a cooling blanket and a dose of paralyzing medication to bring the fever down. A culture later tonight revealed that there is indeed some type of infection growing in her. She is on antibiotics and the ventilator. Her surgery is being postponed until they are certain she is well enough for it.
Not my plan, not a great thing, but I choose joy. How can I not? God used her to teach me this. I hope we can all learn from her. And in the meantime we will wait on The Lord for his perfect timing and perfect plan! Thank you Team Ivy for being here every single day no matter how crazy things get!

Another Update!!! SURGERY POSTPONED!!!!!!

From Sweet Mary!

They just changed it again! She had a lot of dye put in her today and she is really struggling to come back to us. They will wait at least 24 hours now. So the plan is to let her rest and then see how she is tomorrow night and decide at that point if Friday is good or if we should wait till even Monday.  Precious girl is such a little fighter. They look at that RCA and can not believe she actually survives! She should not be here in medical eyes. But God is God!!! And God is the God of miracles!  Dr. Baird said when he saw her on that table today he just gasped at her size and said one word  describes her and one word defines her. Small, and miracle!

We think she is a small, beautiful, very loved miracle!!!

Love Mary

Stay Tuned Team Ivy!!!!!  ~Diana

Ivy's Surgery is TOMORROW!!!!!!!!!!!!!!!!!!!!!!!

Dear Team Ivy,
This is Mary's scribe, Diana, asking you all to start spreading the word about this update!!  Tomorrow is the big day!!  Read more, from Ivy's miraculous day!!!  THANK YOU for standing in the gap once again for this special family!!

From Mary:

Ivy is finally out of the Cath lab. Almost 6 hours later.  We have nothing but praise today!

We discovered that our little girls coronary artery did not just have an occlusion, a small area that is collapsed, kinked or occluded, but the ENTIRE length of the coronary artery, the entire thing, is flat! Collapsed and getting zero blood flow. There is no bypass one can do for that. And a stent  would be sure to clog in their eyes. So they spent hours and hours and hours inserting tiny balloon after balloon after balloon. Moving up in size in very tiny, gradual increments. And right now, right this minute, she has consistent flow. Good flow!!! 

I asked how sure they were that the open artery would stay open and the answer was 100% UN certain. They just don't see this kind of thing and they have never done what they just did. They were not really even expecting it to work. But right now it is and I have faith that it will continue to do so. Team Ivy.... Do you agree!

They also made her left pulmonary artery stent bigger. The flow there looks fantastic! 
They have changed her surgery to TOMORROW !!  Please make this viral! Everyone is set to pray the day after but they want to do it first thing tomorrow morning. 

They will see how the coronary is holding up and they have major valve repair to do. Dr Baird is the valve master! We need that because her valves are a terrible mess!  She will get a new pacemaker and leads and that's about it. That's certainly enough!!  I'm keeping this short and sweet, waiting to be told any second that we can go see Ivy in the ICU.

Thank you all!!!
Mary


P.S:  Tomorrow is also the last day to "Spread The Joy" to order a JOY Tee-Shirt!!!  I can't wait to see you all supporting Ivy Joy with this awesome tee on your backs....  THANK YOU for all of your support.  We are so close to hitting our goal of 200 shirts!!!!  ~Diana

Pre Op Tuesday

 It was a long day and tomorrow is the start of the really long days!

The cardiologist was very nice and very knowledgable. Tomorrow will answer lots of questions and help so much to determine how Friday might go. Bottom line today, they just don't see occluded coronary arteries here because kids don't get them unless like Ivy something has gone wrong. And those kids don't  survive. But Ivy did. They are going in to that part very uncertain. It's no wonder everyone shrugged their shoulders on what to do with it at home.  It's just so high risk and so unseen.  

As for the tricuspid valve, loads of damage, severe regurgitation to the point that her tummy is giant because its full of blood backup. We knew this. They can repair it, but if the cells are dead, the valves still won't work right so we will be back to square one. The heart squeeze would be much better if she had a more accurately placed pacemaker. With the one she has, the leads are in the least optimal place. With 3 leads instead of 2 and better placement we are hopeful her heart will get a better squeeze. So she will get a new pacemaker during open hesrt friday and the leads will be in different places.The squeeze is something that is terribly wrong with her heart right now. We should know  Lots more tomorrow after Cath. Thank you all for praying!!!!!! 

Jeremiah 29:11 – "’For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’"

Boston in the morning

I am known for pulling all nighters in the days leading up to a big trip. It seems like even if I get every single thing done a full week before I leave, my wheels are just turning too fast to sleep at night. I find new things to do. Clean the fridge, organize the closets, anything. 
Tonight we had a nice family dinner with a very special friend and spent the evening with 2 friends here at the house as we finalized the packing. We will leave tomorrow in the early afternoon with no worries. We have been blessed with everything we need. We are filled with a peace that really cannot be explained. It is wonderful!! All in the same sentence though, we are anxious at the thoughts of what this week will bring. We know God has miracles in store for Ivy Joy, and we also know that there is pain and suffering involved with open heart surgery. I can only continue to pray that her recovery is nothing like last time, that her healing is nothing short of miraculous. Just like her life this far.

Thank you for your prayers. Please do not stop. We will be posting often with updates and prayer requests. 
The 19th is a Huge day for Ivy Joy. 
She needs the nations standing in the gaps. 
Will you join me?