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

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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Joy comes in the morning

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