A quick update on our Super Baby!

Pin It So so so grateful that we have gotten to this point and have a stronger Ivy! So happy to report that Ivy's surgeon and cardiologist are very happy with Ivy's heart and it's function! So so grateful to our mighty God who made her and loves her!!

I will be honest with you, she just feels so miserable today. It's hard on a mommy heart!
You know that feeling, when your child looks at you with those eyes that say, why aren't you fixing this? 
She is sleeping it off today and my prayer is that she wakes up with the energy and zest that she showed me last night when she came off the ventilator. She was talking and moving all over and getting very mad when they told her she had to wait 4 hours for water! She was interacting with everyone, asking me to hold her, giving high fives and fist bumps to the nurses! Is she not just amazing?!? I seriously can not get over the magnitude of this baby girls strength and will!

Ivy came off the ventilator at around 6:30 last night. She was put on a high flow cannula and had good sats all night on it. She was tired and slept on and off from 6:30 till the wee hours! She has been drinking lots of water and while she does cough, the nurse said it just sounds like she is protecting her airway and not aspirating. I admit, it really makes me nervous when she does this. 

We tried to feed her all morning but she refused. I know she feels crumby because Ivy only refuses food when she doesn't feel well. I was able to hold her from 7 until 1pm. It was wonderful. She was diving in to my arms when she woke up and I will say, her personality and spirit are back to her normal self. 

At 1pm I laid her down to change her diaper and she fell asleep again. She has slept most of the day, waking only for a drink or to make sure I was still there holding her hand. 

She is getting aggressive chest P.T, her lungs sound very junky, she has a massive amount of phlegm hanging around. It hurts so bad to cough.... can you even imagine? 

She is still on the High flow tonight but the plan is to wean her to regular oxygen later tonight. She is not draining much in her 2 chest tubes (this is good) so they will be taking those out some time tomorrow. 

She is very very very puffy. I should probably add a few more very's. She feels heavy, her legs and arms and hands are even big. They are adding more diuretics but my mommy instinct doesn't see the swelling going down quick enough. It is still considered normal, being only 48 hours post op and being a 3rd open heart surgery in just a few weeks. My prayer is that we see it drastically improved by morning.

So, in order to move forward and get her ticket in to 8 east and out of ICU, here is what we need.

More fluid coming out than going in. 
Eat eat eat! She needs to be eating!
High flow off!
Good respirations, which will only happen if some of that junk in her chest gets coughed up.

Thank you for your prayers!!!
For your sweet children and sweet husbands who have been praying as well.
For the adorable cards and pictures and treasures in the mail!
For loving Ivy Joy!

This precious video is from adorable lil prayer warrior Vivienne!

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Our Hope

Pin It It is my prayer that today is the start of the finish of this journey to Boston for Ivy Joy. While we are still in the critical stage, 48 hours post op, Ivy is doing well and looking good!

She is being weaned from the ventilator little by little with the hopes of getting her off of it today. 

The surgery yesterday was long and yet uneventful! She went on bypass beautifully, she opened easily,  and she came off bypass smoothly. There was some trouble with her rhythms so the pacemaker team came up and they worked until they figured out the problem. She is not even using the external pacing wires, her permanent pacemaker is doing all the work already. 

Dr Baird was able to get a 19mm mechanical valve in her! That is Huge!! He said you almost never could get a valve that size in a child her size because the extra flow could cause some partial heart block. Well..... Ivy already has complete heart block and a Rolls Royce Pacemaker to assist with that so they didn't need to worry about heart block issues. She also has been in heart failure so long that her heart is enlarged thus giving them another small bonus to using the large valve. 

Our doctor said that he does not think Ivy is going to be a very big adult and so this valve will last her a very very long time. At least into her 20's! Possibly longer! 

She will be on Heprin forever now. She'll wear a little medical alert bracelet and we will add the Heprin to the list on it. She should finally have ENERGY due to this new valve. Doc thinks her eating will pick right back up and her recovery will be easier. 

I hope to have news that she is awake the next time I post! And I hope she is off everything!! Meaning no cpap, no bipap, no oxygen!! No feeding tube!! Ok ok one thing at a time! 

Thank you for continuing to lift this precious child in prayer! 

Please Lord, let this be done, no more surprises!! 

Mama is all out of feathers in her hat! And Ivy is tired! 

And yet.... You all know there is nothing I would not do to get this child home and well. 

Life is such a gift! 

Hug your entire family, every single member, a lot tighter and a lot longer this week! I can't wait to hug all of mine!

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Praise The Lord!!

Pin It Ivy is OFF bypass!
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The night before

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 I am back at my sleep station early tonight. Im going to eat a real dinner and get a good night sleep. I have felt every one of your prayers today, every single one. I am so blessed!
And I know that tomorrow is going to be a great day. 
A mechanical valve is going to be the ticket to energy and freedom for little miss!
Well freedom with a helmet on anyway! And a padded suit!

 I love her so much! We all do right! So pray with me, tomorrow, from 7 to whenever they finish! Because God has huge plans for this little girl !

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Ivy Update....

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Thank you all who have been here in prayer and thought for us today!

Ivy is in ICU. She will remain sedated and comfortable through the night and tomorrow at 7am she will undergo her 3rd open heart surgery in 3 weeks.

The problems going on with the right side of her heart,  are all secondary. The real problem is the mitral valve.  Again.

It's been repaired twice but the gouge in it is just too severe to hold. She needs a replacement. A new valve. Dr Baird feels at this point, a mechanical valve would be the best choice for Ivy. It would mean no more replacements until her 20's.  It also means blood thinners and lifetime precautions due to that, but we can handle that.

Oh how I hurt for the continued suffering my tiny angel continues to endure. I don't understand it, I hate it, but I know there is a reason beyond compression and I choose joy again today, for my sweet girl, for my incredible family that has made this all so much easier by the love and strength that they have for each other. For my husband whom I love  so much and can not imagine doing life without him by my side.

Ivy and I are teaming up, and we are going to bust out of this place in no time!!!!  My hope is that we will be eating turkey and mashed potatoes together next Thursday in 8 East and giving Thanks to God for her life and His plans for her!!

Father God,

"Thank you for sustaining me today. Thank you for embracing  Bryan and I, and our family. It is by your Grace that we are all still standing tall. Please let tomorrow be the final phase to Ivy's healing. Let her come out of the Operating room with a fully functioning heart and allow her to come off bypass and the ventilator easily. Let her recovery be miraculous now. Let her soar to a new level of health and growth and development. Ease her mind, diminish her fears, erase her pain and all memories of her suffering. Use us in whatever way you see fit to bless others, to encourage others, to bring glory to You." 

Amen

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Not home yet

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I have gone round and round on how I would share our day

I face planted right onto my laptop, I am so tired! I woke up with my head on the keyboard. It was a hard day, a long day, a big day.

 The doctors were absolutely shocked by todays echo, as were we!
They pulled me aside to talk alone. The sadness in their eyes was enough to make the room feel like an icebox. Dr Maarx, our cardiologist was so kind and so wholeheartedly disappointed. 
Later this evening Dr. Baird came to our room. He held Ivy's hand and rubbed her leg and told her he promised to make her better.

 The echo revealed that Ivy's right side of her heart is not working properly. The tricuspid has severe regurgitation. This is a secondary problem, meaning something else is causing it. Ivy will have a heart Cath first thing tomorrow morning (at 7am).

If it is the right coronary artery again, they can address it in the cath lab. If it is something else... They will need to do open heart again. We pray it is something that can be addressed in the cath lab. And we pray her little body can handle this. She has been through so much in such a short time. 

 I am holding up fine, my heart just crumbles for her. Imagining what she has endured and how we have just finally started to see our smiley girl emerge from the suffering and here we go again.

 I was weary and overwhelmed as I took in the information. Shaken by what seems like continuous suffering and heartache for this precious little peanut. But God is faithful and His timing is perfect. He knows what He is doing and He will perfect us, strengthen us, and make us whole~ with nothing lacking!

Remembering God's Promise tonight~
Be confident of this very thing, that He who has begun a good work in you will complete it. Philippians 1:6

 Our baby needs her team on board again! 
Pray fervently
Rejoice in His promise
Repeat!

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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