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Thursday, May 31, 2012

His plan

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His favor on this child. His hand on her heart when no one else could explain how on earth she was still here. His Love Shines!

Her chest x-ray.. CLEAR! CLEAN! DRY!!!!!!

PSALM 30:2

Oh Lord My God
I Cried Out To You
And You Healed Me

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Wednesday, May 30, 2012

Are we chunky yet?

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 One more day until the big reveal! Will we be ok to continue with fats in the diet or will we go back to the non fat diet?

To say our tiny but mighty Ivy has enjoyed the free for all these past 2 weeks just doesn't say enough!

 Chocolate (yes she loves it again!), chips, cheese and rich sauces! Ice cream and ramen and creamy soups and more chocolate! Peanut butter and nuts and Nutella and buttery potatoes!
 I sure hope she has put a few pounds on, but to be honest, she feels like she weighs 10 pounds! Soooo tiny! I love this dress on her because it covers her itty bitty arms and shoulders and puts the focus back on those amazing eyes and that sweet little face! 
 Ivy is walking holding on to walls and cabinets and whatever is available now. She still chooses not to push things to help her walk and she is still very stubborn about what she will try and when, but as soon as she gets a little confidence going she is so much more open to giving herself a little work out. 

She had a little reaction to the sunscreen I put on her... explains the chafing and darkening of her nose and upper lip :(
We greatly appreciate those that continue to pray for our little miracle as we navigate through the upcoming months. We will give thanks and praise no matter the outcome of Thursday, but we also delight in the truth that we can come to our loving Father and ask of Him anything! Please God, no fluid build up and no ill effects on Ivys health after this change in her diet. 
Amen Pin It

Friday, May 25, 2012

Here and now and what's to come!

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                                               It's DUMMER TIME!!!!!!
Lexi still has trouble with S and therefore replaces it with a D
So summer is Dummer! Every morning she squeals with delight and says,
It's Dummer Time!!!! 

 And what could be better than having so many siblings to share Summer Time with!!
 The girls are already so tan!!!!

 And Ivy's 2 free weeks of fat in the diet are going very well!
 Ivy is showing us her little spunky, happy, silly, fun loving personality more every day!
                                       She is so smart and so adorable!

She is napping 1 short nap per day and continues to sleep through the night. 

                              She takes her medicine like a little champ! Yet still she              is saying ~All Done~ before we even start :)

 And Lexi is still just wonderful in every way! She is the happiest child with the sweetest voice! She is oh so FUNNY! And oh so LoVeD!!!
 A rare moment with no flower or bow in the hair!!!

 So life here at the S house is busy and crazy and non stop fun. 
I am hearing no breathing change in Ivy since we went on the fat FULL diet. We continue to pray that the chest x~ray reveals no fluid so Ivy can continue to eat everything and gain weight.

 One thing we do know for now. Ivy still has a great deal of high pressure in her left pulmonary artery. Before surgery the pressure was 90-100. We ultimately want it to be 20-25. After surgery it stayed too high. That is when they decided to do another heart Cath and insert a stent. Today her pressures are still riding around 60-75. Too high. Her pulmonary artery is able to live with it for now, probably because it adapted to that being the ~norm~ for almost 2 years. So we will wait it out for a few months and allow her body more time to recover. 

But by September.... we will have to talk about doing another procedure. A heart catheterization, to stretch through the stent. This will likely happen by October. And it will happen several more times after until she has a growth spurt and stretching will no longer do the trick. At that time she would need that homograft, (the donated human pulmonary valve) replaced. Instead of replacing it with another pulmonary valve, they will need to replace her entire pulmonary artery. Our prayer is that she will not need that before she is a pre-teen. God knows just the time it will happen and it will be the perfect time, His time. Until then, we praise Him for allowing Ivy to be thriving, to be here, to be FREE!  Pin It

Saturday, May 19, 2012

cardiology update

Pin It  Ivy's cardiology visit was Thursday. She had no weight gain, and since she was fully dressed this time, I think it is probably likely that she lost a few ounces. She has been eating really well, getting lots of calories, but still no gain. Her cardiologist feels she really needs fat to get her to gain, and he has a gut feeling that our special girl is again about to stun the doctors and her parents. She just seems to like surprising people :) It is not normal that a baby who has had the surgery she had and the length of time on ECMO and all the times she was intubated get off the feeding tube so soon. 70% of the kids with complicated cases like hers are tube fed for 4-6 months minimum. Ivy was eating before we left the hospital. She doesn't have a great deal of energy (this too is normal based on what she has endured), she has to be bribed with chocolate to get her to travel in any way, but she is full of surprises when it comes to her eating. Her echo revealed that she is nice and dry.. so they decided to put her on a 2 week trial. Up to 25 grams of fat until next Thursday, then UNLIMITED fat until the following Thursday! She will then have another chest X-ray and we will see right away if there is fluid around the lungs or not. If there is, then they will give her medication to counteract the effects of the short term fat introduction. If there is not then baby girl is free to eat whatever she wants!!! Either way, the next 2 weeks are ours to run with. And let me just say, Ivy has not stopped eating!!  It's her favorite activity!

                                                                          iphone photos

                           Enough sweetness to last a lifetime!

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Wednesday, May 16, 2012

3 months ago, We met!

Pin It And I fell in love with the little darling girl I had only seen in pictures. The little girl that was said to be terrified of strangers and cried at the sight of them even from a distance, was mine! And by the grace of God, she knew I was her mommy! She knew I loved her and she attached very quickly!
3 months later and things are finally settling down a bit.

She has just become mobile again, crawling and creeping along the furniture if it feels worthy of the princesses energy Ha! I have yet to have parented a child as stubborn as Ivy. If Ivy doesn't want something, Ivy is having NO part of it! So if Ivy does not want to crawl, nobody is making her! If she doesn't want to try something, HA if you think you can make her! Not happening! When her physical therapist was here last week she had her crawling to her and walking along the kitchen set. When I walked in the room she quickly plopped down and began to cry holding her arms out for me to save her! I had to cover my face the next time I walked in and instead of pretending she was in extreme pain she shot me the stink eye! Yes, you remember the famous stink eye, well she gave it to mommy! Of course when the hour was over she dove in my arms and kissed me 10 times and clung to me. Before our therapist even got out the door she was asleep in my arms! Oh Ivy!! You hear those two words a lot in our house. Mostly from the sister. Oh Ivy!!

Ivy was not happy about having to take a picture after church. She was ready to go home, after all it was 105 degrees!!!!!! 

She LOVES her sister!! Gets so excited when she sees her in the morning and copies everything she does. So so sweet to watch.
Lexi loves Ivy to pieces and makes sure they have 2 of everything and brings her everything that mommy is trying to get her to crawl to. She just can not stand to see her unhappy. It is absolutely precious and Little Ivy knows that her sister will take care of her.  Lexi gets so excited when she see's Ivy waking up on the video monitor, shouting Ibee's up!!! Ibee's up!!! Yay Ibee woke up!! Lets go get her! It is the sweetest thing.

Lexi plays dolls now (this is new, she had no interest until just recently). She thickens her doll's milk,  gives them medicine. She pretends they have tubes and tells them just one more tube off and you can get out of your hospital bed! Then one last tube and you can come home!! I love how she plays pretend. She has an incredible imagination and plays with her doll house and her little mermaids and princesses more than anything outside of just dancing all day long and making up dances all day long! She loves to sing. She sings all the time and is currently always singing tawor dwift (Taylor Swift) songs. She hears the songs that her sisters dance to and since they are on the iPad she uses them to make her own dances. It is the cutest thing to watch this tiny 3 year old get in her little zone and make up these dances! Her recital is in 2 weeks. She is in 2 dances. She told me yesterday that if there is a part that is too boring she might just do some pirouettes and some split jumps????? Uhgh? She is so funny. The things she says keep us laughing all day. I am so in love with my sweet little Lexi and the adorable joyful spirit that she constantly has! I try to be more like her, appreciating the little things, being content in each moment, giving thanks (she is so thankful), making people happy, loving life!

Today was Ivy's swallow test. She has graduated to nectar thick, so a little thinner but still yucky to our little girl. She will get tested again in 2-3 months. We are able to give her plain water in a slow flow sippy cup as a reward for medicine and in small amounts as needed. Thank goodness!!!!!! Ivy would rather have plain water than any candy or treat! She does not get motivated by treats or rewards just water and outside time.

Our next cardiology appointment is this Thursday. She was having some trouble with some pretty intense swelling but it has gone way down and she looks great. She eats really well as long as it is her current favorite. We just go with the flow. Right now she is still an oatmeal lover (thank you Lord!) she eats it at least 3 times a day. I put carnation instant breakfast in it, or fat free protein powder, and honey. I have found all sorts of very low fat/no fat foods like granola bars and even chips (IVY LOVES CHIPS! They make her sooo happy!)

 This angle makes Lexi look like a bobble head!!!!

Life is Good! 
God is Great!! 
He gives us more than we can imagine, He carries us through things we did not think we could survive, He never says, ~This will be easy~, but He promises we will never go through anything alone. He takes all things and makes them beautiful!!!! Thanking my God, my father, today and ever day for the tough times that have lead me to the relationship I have with Him today!! I am blessed!!! Pin It
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