Another week begins

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Lots going on here in Boston!

An improved xray was the good news this afternoon!

More visitors, thank you Maggie and Kim M for your visits this weekend and your patience in allowing Ivy to decide when it was ok to get near her and interact with her. I loved watching her finally be able to have control over something. And I love how you both earned her trust by the end of the visit. It was a treat to be able to share this amazing sweet girl with the both of you. I look forward to a day when we can do it under much better circumstances.

 Pointing to the door when the unfamiliar surgical nurse came in to say hello. She did not recognize her so she said get out!

 Making a turkey with the volunteers, just like the big kids!

 Looking at pictures of our sweet friend Kim's little girl Annie.

 Modeling the adorable bunny coat that Miss Kim gave her!

 The nurse walked in as I was getting my camera out so all I got were these little pouty faces. She is such a hunny either way. But man am I ever excited to see my little flower blossom back at home. No one to be afraid of, nothing to scare her! 

Hilda, you know who I'm talking to.. Shame on you!! Please find a new hobby that does not involve my daughter or my blog. Perhaps pottery would be a good fit? I actually know an amazing Potter. Perhaps I could introduce you to Him! 
I have deleted your nasty comment and will continue to do so, so please go away. 

 The greasy hands and face are courtesy of her obsession with bacitracin! We use it on her nose as the rip from the ventilator is healing but she likes to take it and rub it all over her! And that is A ok with me!

Tomorrow is a big day. It will shape how much longer we will be here. And let me tell you...... we are really antsy to NOT be here any longer! Today is day 30 in Boston!
So we have the feeding team coming in the morning to watch her eat breakfast and drink. Then the feeding tube comes out. Next is a swallow test. Then an echo cardiogram. We specifically pray that the aspiration be gone. That the mitral valve is still doing well. That Ivy eats and drinks more with the feeding tube out. That we get the go ahead to be on a plane by Friday!!! Pin It

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

We are still here

Pin It 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 :)

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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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A new day

Pin It 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.


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Hello Sunshine!!

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Just thought I'd post early today since Little Miss is napping!

She had physical, occupational, and speech therapy today! She will continue with it every day! YAY! 

I'm jumping for joy with all the progress baby girl is making!!

Today she stood with help.

She colored a beautiful picture !

She drank from a straw. She choked, it seems to go down the wrong pipe. Her speech therapist added thickener to the water. It still caused her to cough a wee bit. 

Later today they are going to try again while watching with an ultra sound. This way they can see exactly where the water is going and if she is just perhaps still not healed enough to be drinking.

Foot notes from mommy: Kinda negative but I need to vent a little and then move on...

When I walked in to Ivy's room this morning she was sitting in vomit...  Her little shirt was off and she was sitting up by herself in her bed and the sheets were soiled with formula and her face was crusty white and her chest and neck and hair full of crusted white stuff.

I asked the nurse if she had thrown up and she said no.... 

It was very dry... and her little shirt was soaking in a bucket of water on the sink. With white formula all over it?

The respiratory therapist came in a few minutes later. Have I shared how much I love all the RT's here??? I have had 6 until today, our new one today makes 7. Every one of them is MY FAVORITE!!!! And Ivy is sooo sweet to them which is not normal because kids do not like to get EZ paps and be suctioned through a tube down your nose. So they have very deep sweet spots for Little Ivy who nods her head yes when they ask if they can give her a treatment. 

Anyway, the RT asked me if Ivy had thrown up any more? Thrown up??? I told her that the nurse said she didn't know anything about it? RT said she had thrown up at 4 am so they did not do her 5 am EZ pap. The nurses meet and talk for a good 30 minutes before they change shifts. It was all in the notes she left her as well. In fact she read it from the other nurses notes during rounds. So my guess is that it happened again and the new nurse never noticed it. She just wasn't checking on her so she missed it. What makes me sad is that it was completely dry! The bed and everything. The stuff in her hair and on her body, completely dry. When the RT spoke with her about the episode from 4am she said she vaguely remembers it now? So RT tells me that her night nurse bathed her, changed her sheets and requested that they come back later for her EZpap so she could recover.  Todays nurse also did not remember to call for Ivy's diuretic. She was taken off the lasix drip and put on every 8 hours and then has one other. She was supposed to call the pharmacy about the other but she forgot :(

Ivy has not peed since 6pm yesterday. 18 hours!!

So while I was on my soap box I asked if someone could please rewire my baby's nose!! It is bleeding because they have her feeding tube lifted so high and her poor nostril is being cut and stretched by it. And this cannula?? Hello? This is an adult size cannula on her! The RT told me not to worry, she would do it all for me, not to even wait for the nurse. (we have had this nurse 3 times now :) She is very experienced... been nursing a really long time... and she has lost her love for it :(

It's very obvious when she talks to the nurses about her other patient, using potty talk to describe how mad the child gets when they change her lines and such. She made my niece cry last week, my niece was with Ivy while I was out of the room and she told my niece that she didn't need to stay in the room, that the baby would be better off if she left :( Ya, she's really not a sweetie, bummer!! But we try shower her with sweetness in hopes that she is reminded of how rewarding and fun it is to be a nurse at a children's hospital. She is, after all a huge part of these kids life right now. 

Any way, ~my favorite~ Respiratory Therapist got Ivy a newborn cannula (PERFECT FIT), moved the feeding tube to the other nostril and taped things so that her nostril and is not being hurt in any way! I feel so much better now!!! See, I'm human... I complained today. 

Now back to my awesome little champ who happens to have been moved in to a crib because she is getting stronger every day and might just jump out of that big bed they had her in. I much prefer the bed... I can't get in her crib. But her nurse said even though we are always here, the second someone takes their eyes off her she would be climbing out of her bed... lol

Thankful for this day!! That Bryan or I are able to be here every day! That God is with her every second and he is SHINING!!!!!!!!!!!

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~updated~ Day 17 in the PICU ~updated~

Pin It I know... my blog post titles are getting kind of repetitive! Sorry :) this is just a quick post to let you know where we stand this morning. I will try to update after the doctors do rounds.
Ivy had a good night. She struggled with sedation as usual but her most awesome, loving, amazing night nurse Jodi (we have had her before when Ivy was just coming off ECMO and we LOVED her) took very good care of her and got her very comfortable!! 
The respiratory therapist said that they have Ivy weaned all the way down on her ventilator and from the breathing standpoint she is doing positively perfect!!! She has her sats right where they need to be and she is not really using the ventilator that is still in her throat. What does this mean??? It means that she is ready to be extubated!!!! It means that her diaphragm is WORKING!!!!!! 


But....... her lungs look worse today than they did yesterday. She has a lot of pulmonary hypertension. The lungs look very cloudy. She sounds major junky. She needs to cough up a lot of stuff but the surgery she had yesterday is very painful and she is still sore from the chest being opened on the 26th, so coughing is not something she is going to do voluntarily right now. She has a new chest tube from last nights surgery and it is still draining a ton. Not super abnormal but more than what they expected by this morning. Again, not a big deal at this point.
We are waiting to see if anything grows from the phlegm sample they took from Ivy yesterday. Prayers that she does not have pneumonia. 

She looks fabulous this morning. Just a tad bit of swelling and a big owie on her bottom lip. She bit it last night when they were wiping her mouth with the peppermint stick. My nurse was so apologetic and sweet about it. Last night when I was leaving, nurse Jodi came to me and said, ~I want you to know that I am overjoyed that Ivy finally got this surgery and that it went so well tonight, and I am even more overjoyed that I get to be her nurse tonight!! Then she told me this morning when she left that she would be back tonight and that she was going to do whatever she could to have Ivy again. 
~blessed~


Update  4:45pm


Little Miss Cutie Pants is doing good. She has times where she seems very uncomfortable but they are very short lived. She just makes very sad faces and kicks and shakes her head NO


We had an x~ray done just a few minutes ago and her lungs look much better than this morning!!! Much Better!!!!! 


They are giving her a steroid for the swelling in her throat, remember she had to be re~intubated yesterday when she coughed up her tube. So her throat was very swollen and raw. The steroids are relieving that swelling and getting her ready to ex tubate in the morning!!!! Yep yep! You read that right! The ventilator go's bye bye in the morning!! 


Jaime~ She is on diuretics, lots of it!! She will go home with it too. She gets Lasix on a drip and she gets one other in her line. I am going to mention to them during rounds tonight that I notice she is getting less Lasix than she was before, and ask why?
To make things even more similar to Miss E, if her lungs don't continue to look better they will be placing another chest tube. I remember E had her's forever!! And the chest tube that went in last night is draining a TON. It wasn't a huge concern this morning but her output has tripled since then! These Hangzhou girls will need to meet some day!! 


And last, before I close out for the day, her pacemaker! I can feel it! It is very strange... I mean seriously, they showed me the x ray and that was interesting, seeing this box and these wires in my baby girls body right there on the x ray. We need that pacemaker so seeing it didn't really seem odd. But.... feeling it!! I place my hand on her and there is this very hard, metal hard, panel! Right under her skin. She is soooo skinny, maybe some fat will cover it up? I just can't explain how strange it is to feel this hard panel, really strange. But we will find lots of ways to make her feel extra cool about her pacemaker!!  Pin It

He Brings Victory!!!!!

Pin It Praising God tonight!!! Whispering in baby girls ear and Praising the King!!! Whispering all of your names, no matter who you are or what you believe, we are all one, and Ivy will always hear about the parade of angels who loved her from Arizona to Dhabi, UAE and back!!!! 

She is back in her room and resting. My little warrior princess had her eyes open when they rolled her back to her room!! She does not mess around! 

The doctor used the same incision for her pacemaker and her diaphragm. They are going to wean her off the ventilator as they see her doing more on her own and we hope to have her ex~tubated in the next 48 hours!! 


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Day 16 in the PICU

Pin It Monday Bryan was with Ivy in the room and I ran the kids to school and took Lexi to dance. My niece is here for a few days and was dying to see Ivy (and mommy was already missing her terribly) So after dance we headed right over to the hospital. 

Lexi had fallen asleep on the way over so I sent Rylee and my Niece Michaela in first. A few minutes later when I entered the room I began talking while I washed my hands and my baby girl who was very much still asleep and out of it, opens her eyes WIDE!!! She heard her mama and there was no mistaking she knew who I was. 

God knew I would need that to get me through what lay ahead for the day. As I walked over to her bed (She is in a new room now, they moved her because she and the girl next door are pretty critical cases and having them right next door to each other makes nurse pairing for breaks and such, very difficult)

I immediately noticed that most of her lines and cords were coming from the left side of the bed. She always has bundles of things coming from both sides but it was very open looking (maybe 4 or 5 things) on the right side. I had this overwhelming desire to figure out how to scoop her up. I wedged my way in and easily cradled her in my arms. I was standing and holding my sweet little hero! 

Her machines started beeping, her blood pressure rose, but she was completely relaxed and gave me another much needed confirmation that she knew who I was. It's tough not to wonder a little... after all she was only home 4 weeks before the hospital stay that is now up to 2 weeks and 2 days. If we have to start over with our attachment and bonding then we have no problem with that, but being able to just pick up where we left off would sure be a giant gift!!!!!

It was only about an hour later that she began showing signs of distress and very quickly she was hooked back up to the cpap machine and mask. 

By late afternoon they felt she was working way too hard and they immediately put her back on the ventilator. 

Sadness to my heart, you know, thats 3 steps back... but what she needed at this time.

By the evening I became a bit.... frustrated by the fact that they know her diaphragm is the cause of all this trouble her lungs are having so really why on earth are they waiting to see if it will fix itself? I said it last week when they re-intubated and I will say it again, she needs a pacemaker, she already had the ventilator in and was ready to go... why do they keep waiting to fix this? Im not a doctor, I'm just mom so I wait and wonder. We did finally hear this morning that the diaphragm nick is actually a severed nerve. Ivy's diaphragm is paralyzed, it's no wonder her lung is unable to function and remains collapsed.

The diaphragm is the most important respiratory muscle. During repirapiration, the diaphragm contracts and moves  in a pistonlike fashion. This motion forces the abdominal contents down and forward, increasing the vertical dimension of the chest cavity. In addition, the ribs lift the lateral aspect of the diaphragm during inspiration, causing the transverse diameter of the thorax to increase. As the diaphragm contracts, pleural pressure decreases, facilitating lung inflation. Normal diaphragmatic function accounts for 75% of air movement during normal respiration and is responsible for 60% of minute volume in the supine position. 

They would have done emergency surgery last night but she had been fed via the NG tube so it left us waiting with hope that they could squeeze her in today. 

This morning when I walked in the nurses told me that she was mad. Mad? They said she was kicking her legs and seemed agitated. I walked up to her and said her name and her eyes POPPED OPEN! She was way way down on her meds and it was obvious. She looked at me with more focus and she reached for her breathing tube with both hands in splints and no use of her fingers and she looked at me and shook her head NO. Bottom lip flipped and yes, mine flipped too! She was pleading for me to get that discomfort out of her throat. She settled right down when I lay my head on her bed close to her face giving her lots of mommy kisses and wispering in her ear. I told her all about how much of a hero she was to me and how we have never left her side and how we never ever will. I told her that she had new bunnies and chocolate and jammies and books and and toys and cards and stuffed animals waiting for her when she woke up. I told her that I loved her a hundred times and the nurses called the nurses who called the nurses to see how this baby in room 5-101 had gone in to a complete state of calm serenity when her mommy came in and comforted her. I asked the nurses to keep her sedatives far away and to let me do the calming from here out. They agreed that that was certainly best for Ivy.

But as usual things never remain the same for long in Ivy's room... it's the room of miracles and the room of constant events.

She was sound asleep for about and hour, or as sound as one could get with every machine in the room always beeping and the alarm of the respiratory machine (so loud!!) sounding. She started to cough so the nurse started suctioning. 8 syringes later she felt something was wrong. Cloudy white junk was filling her syringe. She called for emergency assistance, before I knew it their were 3 doctors and 6 nurses in the room and it was growing to many more. They felt she may have coughed up her tube or it was clogged with those secretions. Her sats all dropped so low that the doctor didn't want to wait to find out. They ex tubated and re intubated. She is supposed to have surgery around 3pm to place the pacemaker and plicate the diaphragm. With blood stained lips and ice cold legs, hands and feet, wrapped in her blankies, sarebear by her side, eyes open but in a complete daze, she continues to have the comfort of the one who created her, holding her in the palm of his hands, getting her through each and every hard step she takes and reminding us to be still and just know!!

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*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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One less accessory!

Pin It After a sleepless night for our Little Miracle Girl, but lots of rest for mommy, I was greeted by a very restless very stressed out baby this morning. Arms wide open,  saying mama mama, precious Ivy was so happy to see me! Thank you for all your prayers, the rest I got last night was solid and so needed!! I feel like a new girl today and SO DOES IVY!!!!!!! Just minutes after I walked in today, they began the discussion of taking Ivy off CPAP! Her lungs have drastically improved, her blood gas is normal, her numbers look good, there was really nothing stopping them!!!! So that was it! One thing I LOVE about this team is that when they say they are going to do something, they do it! You don't wait all day for it to really happen. Now of course if her cardiologist needs to be here for it and he is in surgery then things might change, but any other time, you do not wait for anything! Love that! 
You can imagine my little mind during this time.... invisioning the wet washcloth, my baby girls lips being wet and cleaned, maybe a peppermint sponge or a few ice chips?? I could barely keep still! And that was that! The doctors came in, they all agreed, the respiratory therapist appeared with her new accessories and the removal of the old ones began!!!

 Out with the old........

The mask I pictured yesterday is not the mask Ivy has been wearing for the past 24 hours. The one shown above is the one she has been wearing. They had a really hard time finding one small enough to fit her face. Even the petite one would get air leaks causing her machine to alarm constantly. Im not talking about the type of beep you hear when her O2 gets low or her Meds finish, or someone forgot to put their seatbelt on. I'm talking about the type of alarm you hear when someone opens the emergency exit door! Its LOUD! So they took her off of that mask and put her in this old fashioned one from back in the day and attached a gel pillow to the back of it. She must have felt like she was being restrained, she was clearly so very uncomfortable.

Just when I thought this day couldn't get any better, Nurse Jaime arrived!!! Yay we love Jaime! She had Ivy hooked up with a damp washcloth within minutes!!

And when I asked her if Ivy could have some ice chips she ran off so quick and came back with a whole cup!!!!!!!!! And a spoon! Ivy grabbed that spoon faster than I could blink and was shoveling it in to her mouth!!! I slowly placed one ice chip in her mouth at a time and she would just roll her eyes back and savor the wet she had been thirsting for all week! It was the most beautiful sight, her body relaxed and for the first time in 24 hours, she was content. She looked at me with those gorgeous eyes of hers and opened her mouth so wide for more. She put her arms out to me and I just leaned in and cradled her as if to hold her the best I could with all her cords, kissing her cheek and whispering Jesus loves you, mommy loves you, daddy loves you!! And she fell asleep.

Thank you Jesus!! 

And thanks to Ivy's special angel Di, 

Look what is waiting for her when she is all better..

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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

To Him be the glory

Pin It As I watch her chest rise and fall, my hands tremble at the miracle of her life. We are witnesses to Gods love in action! Witnesses of Gods answered prayer and faithfulness. 

 I fall before Him in thanksgiving and can hardly breath as I think of the magnitude of my love for this little girl. I held her for the first time 46 days ago. I told her I love her over 100 times that day and I wept as I kissed her and promised to love her forever no matter what. And my love for her has taught me that faith is undefinable, and love is indescribable.

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