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Monday, January 27, 2014

Getting Well!!!!!

Pin It Well I'm thrilled to be sharing that after being on edge for 2 weeks we are finally comfortable with Ivy's progress!! 

 We had a HARD HARD Thursday, Friday! When we went to the pediatrician Friday they were not at all happy with the lack of progress she was having. 
They advised we see the cardiologist right away as it appeared advanced heart failure had to be the cause of her continued cough and now what was becoming a big hard belly! 

I was scared and I was not ready to take the chance of her ending up stuck in the wrong hospital so I began packing our things in preparation for a trip to California where she could be seen at Lucile Packard. I called her cardiologist and we went through everything. Where this began, where it had progressed and where she was now. What we had tried, what worked and what was not working. Clearly, breathing treatments were not offering her any relief and she had finished the steroids and the antibiotics. He said that yes, this flu had been too much for her little heart and taking the sildenofil away at just about the same time... all a whole lot for her just recovering heart to handle. But in the mix of it, he really thought that a sinus infection had set in as well, and was the cause of her continuing cough. He told me to use my own judgement and if I felt that she needed to be back on the Sildenofil, to go ahead and do it. He had me call the pediatrician back and have her put Ivy on 20 days of a stronger antibiotic. I called. I spoke with the nurse practitioner we had seen that morning. She disagreed with my cardiologist... but said ok. She agreed to call in the prescription however she never did. I tried all weekend to pick it up but it was never called in. Friday afternoon, I decided it was time to start the Sildenofil. I was ready to do it a week ago, I just needed permission. I also gave her some rescue diuretics. We started seeing results right away!

This morning we saw the pulmonologist. He agreed that she needed her Sildenofil, her heart and lungs were not ready to handle all of this sickness and he also felt that she had sinusitis! We had 3 X-rays done to rule everything out and he called me an hour later to tell me she indeed did have raging sinusitis and he would be putting her on 20 days of a strong antibiotic! Oh yes, my cardiologist is a smart guy! I had Ivy in the pediatricians office how many times? Anyway, the only thing that matters now is that she is getting better every day. 
 By Sunday she was starting to stand and take a few steps and her spirits were way up! She hung out with one of her buddies while we went to church on Sunday. She made her first trip to Target in a very long time... Ivy is Target obsessed! By Sunday afternoon she had eaten more than her weight in veggies, eggs, shrimp, mushrooms, potatoes! Later that afternoon she surprised us all by asking to go for a little swim! She got in the pool and floated around for about 25 minutes. We were feeling very relieved and very confident that putting her back on Sildenofil was the right thing to do. Today she is walking, eating non stop and very happy! She has started her new antibiotic and we were told that this cough should be a thing of the past in 7-10 days. Her belly looks a lot better tonight and her face is no longer sunk in. I think her weight loss is nothing to worry about. The way she is eating she has probably already gained it all back! 

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Friday, January 24, 2014


Pin It I meant to reference back to Jan 6, 2013. Not 2012. I think these past 2 years have all run together ;) Pin It

Thursday, January 23, 2014

Flu update

Pin It Just a quick post to update. Ivy is up and awake this morning. She had her 8am breathing treatment and pulmacort and she seems comfortable here with us watching her favorite movie Tangled. She is being very cute and funny this morning, very much wanting to be close to her sister but still not wanting to play or get up. 

I took her to the pediatrician again yesterday for a full check up and we go again on Friday. I know I am being a bit aggressive with my concerns but we have traveled the unknown road with her far too many times and most of the time everyone thinks things are fine and then suddenly they are not. I see little things that appear normal to someone who doesn't see her every day and really know her so don't think Im crazy, I'm just making sure I cover all of my bases because that is my promise as her mama.

As much as I want this to be just the flu and on its way out.. and boy will I be thrilled when its on its way out.... I'm still on guard and my antennas are not resting. I will be the first one to jump for joy when someone say, told you so, just the flu!

So yesterdays appointment. Despite round the clock breathing treatments, her O2 was 88. This is low for Ivy Joy. She was in the 80's when we took her to the pediatrician when this first started and around 89-90 when we were discharged from our ER visit at the hospital. So really, no improvement. She sounded very junky and very tight, all the same as our previous checks.

We see the Pulmonologist on Monday. Im sure if she is still looking like she does today, we will get some answers. She still answers, not good, when I ask her how she is feeling. But when the pediatrician asked her, she replied, I'm great!!!  She is so stinking sweet! When I told her we were going back to the doctors yesterday she said, no! I take my medicine! I take my breathing treatments with no crying!! I drink my water!! It broke my heart in tiny pieces! She was so scared she would be going back in the hospital.

I was looking back at some old posts this morning. I should never have done that!! We look forward, not back. The past is over. I know I know. But I looked back at January 6th, 2013. You can find it if you go back in the archives to that date.

I think as a mom of a kiddo like Ivy, my feelers will always be out and while I attempt each morning to cast my fears unto Him and lay my worries at His feet... As a human, as a mommy, as her mommy, It is not entirely possible for me to let it all go. I am certain God made me this way knowing all along who would be my daughter. I can not get out of my head.... Cough could be caused by blood backing up. But I have a cough, Bryan has a cough... I need to let it go. My girls sing Let It Go from frozen all day long. Well Ivy used to before she got sick.

I'll be back her Friday. Prayerfully with some very good news about this Flu...

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Tuesday, January 21, 2014

sick and sleepy

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I am posting tons of photos from January here. Ivy Joy has been SO sick for the past 9 days. Both girls had flu shots but unfortunately Miss Ivy still got the flu. She had her mama very scared this past week.  We had about 6 days of non stop sleep, opening her eyes for a few minutes to get a drink and then back to sleep she went. She was put on breathing treatments, steroids, and antibiotics but still, 9 days later she is a long way from better. She is finally awake but still has zero activity and a cough that goes on and on. Very very wheezy. But she is home and we are amazed that she is able to fight something as bad as this. Amazed. She told Lexi today that she is going to be sick for 6 more years so she needs to find a new friend to play with... Lexi was sobbing! I am not having any trouble getting her to drink, I have told her that she will need an IV if she can't drink all of the water in her water bottle. She drinks it right up now!
I am however having a very hard time getting her to eat. She has been laying around for so long and already has lost several pounds (she had no room to do that) and now we need to get her eating but she refuses. She is drinking some yogurt drinks (a huge surprise, this child drinks nothing other than water), and eating Cheeze itz crackers. Tomorrow I may have to tell my poor sweet girl about food that goes through an IV. Man, talk about the worst part of the job... maybe I will ask daddy to tell her!

The sisters

Ivy and Myah (Her buddy from Hangzhou) swinging together.

These statues look just like the statues in Guangzhou China so we had to take pictures! 

Checking out Myah's boo boo

              Exchanging Christmas gifts

                            Saying goodbye

                             Ice skating

Lexi loves Ice Skating!

The smallest skates just fell right off of Ivy's feet!

      So we let her check things out in her boots.

Until we got kicked off the ice. No boots allowed!

And this one closed the place down! She would have stayed the night!

 I took these just a day or two before Ivy got really sick. She was looking so full in the cheeks and feeling so much more solid. 

Look at all the beautiful thick hair she is getting! 

And this little beauty, oh what a trooper she has been as we have been home bound for what seems like forever! She is so patient and so easy going.

 And she loves the camera so I take advantage while I can. 

Our weather has been gorgeous and I simply can't wait to be outside with both girls again! Ivy has got to get well in order to keep with the plan and have this heart cath in February.

Our first trip to an Arabian Horse Ranch where the girls got to greet and feed and interact with 17 horses. 6 of them will be mommies in the next 2 months. We are hoping to make another trip back to see the new babies!! Lexi is currently crazy about horses. She told me today, "Mommy, I love horses, I just don't love the way that they smell. I love them so much that I try to forget the smell, it just takes me a while and makes my tummy hurt a little bit." Love my sweet girl!

Hoping and praying that the road to recovery is near and we will have our Ivy Girl back to her sweet spunky self soon!

         Her playmate misses her a whole lot!

For you shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands. Is 55:12

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Saturday, January 4, 2014

hip hip hooray!

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Today was Ivy's first day OFF Sildenofil!
Sildenofil is her medication for pulmonary hypertension. We need her off of this drug for a month before measuring her pressures again in her February heart catheterization. This is a HUGE step for her. This mama is nervous!!! I already feel like I see effects of her not being on it today and I could be completely phsyco but I'm just being honest. Her color looked different (bluish), her walk was cautious, her energy was low and appetite was small. I am holding on to hope that her body is adjusting and she will continue to thrive without it. None the less, my eyes are wide open and my mama antennas are pulled as high as they can go. We have an echo next week, labs the following and then NOTHING until we head to California in early February! 
The weather is gorgeous here! I think that's not the case for many of you so enjoy these photos of our girls enjoying their favorite Christmas gift... snow in the driveway, while all the grass is green in the background! We are far from snowed in here :)

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