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Showing posts with label summer 2013. Show all posts
Showing posts with label summer 2013. Show all posts

Tuesday, August 13, 2013

Waiting on results

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We got to get the little Empress out in the wagon today. She had been asking all morning!
We have been given the thumbs up with neurology so now it is just up to her heart doctors to say when we can go. We have 2 more IV's gone as of today. So down to just the one in her right hand. She had lots of awake time today! She is very on edge, Ivy is usually the star patient. most cooperative little patient you can ever imagine! Well today she pitched a hissy fit like we have NEVER seen. She was pounding her tiny fist and shouting at the top of her munchkin lungs, "I NOT GONNA LAY DOWN FOR MY ECHO! I DONT WANT ECHO! I NOT! I NOT DO IT MOMMY!!!!!!" She hates tape. She has had her skin pulled way too many times and she is terrified of getting tape taken off. Well, she had an IV on her groin and another in her foot and that was a lot of tape to come off. She'd had enough and when the echo tech came, she was DONE! It made me feel so relieved to see her fight come out for reasons other than getting through near death experiences. Seeing her use it to protect herself, to own up, to be heard, made me proud. I want her to be herself. I want her to know that she has every right to tell these people she is NOT HAPPY about this! Tonight is going much better. No tests left to do, no tape to pull, just hanging with her daddy tonight while mommy is at the hotel with the other 2. Waiting on pins and needles for the results from todays Echo.






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Sunday, August 11, 2013

A little love

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Today, Ivy has decided to rest. She was up for 10 hours straight after being extubated yesterday. Not because she was wired and feeling energetic, but because she did not want to miss a thing. If something else was going to happen to her.. she was not about to sleep through it again! So around 11pm she closed her eyes for the first time all day. But she made sure to wake up every 30 minutes or so. She'd ask her amazing nurse Lesley what she was doing. Why she was doing that. She used her little potty (this girl amazes us how even in her current condition, she uses her potty even in the middle of the night) she drank lots of her beloved water and she was content. This morning she is resting up! She slept until about 1pm, woke up to go potty and is now trying to have some soft food. She really isn't interested in food yet. Such an odd thought for our little muncher! Her last drain on her head was removed this morning. She will get her Arterial line out later today and possibly the NG tube they were using for meds. By tomorrow we should be moving over to the non intensive care cardiac floor. 
We spoke with neurologists in more depth today. Probably because they can see now that she is acting 100% normal. We were told that the extremty of her bleed was very impressive and that the brain was so tight that they could bounce a quarter off of it before releasing the blood. Not good!!! So once again we praise God for getting Ivy through in miraculous ways! Today her right eye is swollen shut, and her right side of face and head are very puffy. Normal, but doesn't look too comfortable. She shines like a super star regardless. She keeps asking me why all the other babies are crying. I tell her because its not much fun here. The nurse tells her because they just aren't Ivy Joy. Whatever the case, I pray for all the friends as she calls them, sharing this pod with us and that all of them are home in their own beds soon! Pin It

Tuesday, August 6, 2013

JOYFUL

Pin It I said I wouldn't be back on today.... But sometimes things change. And I didn't want to keep anyone hanging when here we are just sitting in front of Little Einstein's. Ivy with both eyes closed, for the moment, exhausted from this long day. Me with huge wide eyes, living on caffeine today! Filled with joy and relief to be passed this procedure and one day closer to having my family together again!
I finally got my eyes and hands on little peanut at about 1:30 this afternoon. She had blood coming out of her mouth as she tried calling out for me. It looks like they must have cut her somewhere when they intubated or extubated her. I have not found the source yet but it continues to cause bleeding. She wanted to sit up... you can't do that for 4-6 hours so we had some, "Somebody help me! Get me outta here! Help!!" Going on. Once she understood what we were waiting for and why, she calmed down and being very loopy from the meds still she started calling out to all the nurses! "Hi friend! You doing ok? Ya? You are? Ok! 
Then moves on to the next nurse. Hilarious! Had the nurses in tears laughing!
Then she suddenly started bleeding from every place they attempted to put an IV this morning. Oozing blood everywhere.  They attempted IV's in each foot, each arm, one hand, one foot. All were bleeding. They finally got an EJ in her neck (So uncomfortable!) and that was bleeding too. Her mouth, her nose, lots of blood. They decided to turn off the heparin drip early and put her back on her coumadin tonight. Then she ended up needing a blood transfusion so we are actually in the process of that right now. They ran labs to check INR and she was 8.5! No wonder she's oozing everywhere! 
She ate a few cheetos, drank a lot of water and seems to be uncomfortable and anxious. She is on oxygen for her sats right now. When we take her off she drops to the high 60's so she clearly has some recovery to do tonight, the cath was long and took a toll on the little peanut. Any way, the end of this update is the part I'm so excited to share!
Ivy's nurse from the transplant team came in to see me tonight. While she did not speak of her overall right or left side function or the future as far as Ivy's heart goes, they are saving that for our appointment with the whole team on Thursday. She came to visit us tonight because she could not wait to tell me that Ivy's pressures are NEAR NORMAL! Her pulmonary hypertension has dropped more drastically than they ever experienced in just 3 months and they are ecstatic! She will no longer require oxygen!!! Did you hear that.... coming home with NOTHING hooked to her! She will stay on Sildenofil until her next cath (no date for that as of yet but guessing 3 months from today) and then wean off right before that cath to measure true pressures with no assistance from the medication. This crazy expensive medication is not covered by our insurance so as absolutely out of control happy happy happy as I am for baby girl, I have to be honest and tell you what a financial relief that will also be to Bryan and I. 
The news on her coronary artery is that there is a suit has scar tissue growing all around it and the scar tissue has basically pushed the coronary artery to a nearly closed surgical clip right next to her RCA. Scar tissue grows around foreign objects and this scar tissue that has grown has caused her coronary to be nearly closed in one area. It is not the area with the holes. It is lower and it was successfully ballooned today. Since she is so young they felt that a stint was not an option but it will likely need to be ballooned again during her next cath. The great news is that after it was ballooned, it showed better flow! 
Alright, back to cuddling my little peanut! She is waking up and she has a tummy ache :(

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer. Pin It

Saturday, August 3, 2013

Wedding Day

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The girls had a wonderful time being flower girls at our cousins wedding last night. Ivy had spiked a fever the night before and continued with it through the wedding but she was such a trooper and lasted until 10pm. It was surreal for us, seeing the little girls together, getting ready, walking down the isle, making special memories. We are also so excited to be welcoming our new cousin Myles in to the family. He too, like our little girls, grew inside his mothers heart, rather than under it, and joined his family through the gift of adoption. 



                         Lexi Jade. Dressed and ready to go!










                  Ivy Joy. Dressed and oh so ready to go!




                                                                 
                   Lexi above, Ivy below

                                                         






Lexi, waiting patiently






Ivy waiting patiently






 There was a whole lot of waiting and waiting for the 6:30pm wedding! I am so proud of how patient and sweet the girls were the entire day!





And what a sweet surprise when the bride asked them to come inside her tent!









Tomorrow we head to Lucile Packard Children's for the week. Please keep Ivy Joy in your prayers!


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Sunday, July 21, 2013

Upcoming Heart Catheterization for Little Miss Ivy

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 2 1/2 Amazing months of a healthy girl! No hospital stays, No pulmonary effusions, No Edema! 

 This little girl has amazed us. Not just by the way she carries on, but by the way she does it with such joy! She wears her oxygen day and night but gets so excited for  her moments off the oxygen to play un tethered for a while. She takes her 21 syringes of medication with no hesitation now, no bribery needed. She loves that she has become a little girl and can run and play now. She has discovered her independence and is often found trying to do big kid things saying, I Do It MYBYSELF!




On August 5th Ivy will head back to Lucile Packard Children's for her next heart Catheterization. It will have been 3 months since her last one and we have high hopes that this Cath will hold wonderful news for our baby girl!


 We need to hear that Ivy's pulmonary hypertension has lessened. That her pressures are at an acceptable level for a transplant. Or, our biggest hope, yes, this one is our hope for a miracle, we pray that the results show that her heart is recovering and after some much needed rest and all of these heart failure medications, it is working! That it is recovering and that we may be able to save the heart she was born with. We know whatever the plan, it will be the perfect plan for Ivy Joy. 




Before We head to Stanford, the girls will be in their cousins wedding and we will get to spend a whole week with our family there. So many relatives still yet to meet little Ivy! The girls can hardly wait! 

Thank you for keeping our daughter in your thoughts and prayers. So many of you have emailed to check on her and left comments assuring that your family continues to keep her in your prayers. We love and appreciate you all so much! 
Heart Cath work up/pre op August 5th, 2013
Cath August 6th, 2013 




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Friday, June 21, 2013

Prayers from my treasures

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 Lexi~  Dear Jesus, please heal my cold tomorrow or Monday or Saturday or something, so Ivy and I can share water again.
 Dear Jesus, you are still healing my baby sisters heart and I'm proud of you. I know it's hard work but I know you can do this when you have time. And please heal our friend Teresa's heart too because it needs a new beat right away.
 Dear Jesus, thank you for making me an amazing dancer. I know you worked hard on that.


 IVY~ Jesus thank you for my food and Birthday parties. I love Birthday parties!

Lexi~  Lord you hear our prayers. Thank you for your word. Thank you for the turtle at Georgea's birthday party. I really hope I can get one just like it for Christmas last year. 







Thank you God for my sister and for making me born in China so Ivy and I can be the same! 


Psalm 40:1-3
I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord.

 Friends, let nothing stop you from believing in miracles! 







 And never miss out on a hidden treasure! 
 There are treasures all around you! And miracles still happen!




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Friday, June 14, 2013

Change is good

Pin It Life is so much different this week! Ivy Joy is 100% mobile for the first time in her life! She just walks all over the house, gets her snacks, climbs in her big girl chair (will have nothing to do with the highchair now), climbs in the learning tower, walks to her potty and goes pee pee, goes swimming with us and doesn't scream the entire time, will wear her water wings and swim from step to step in our hot tub (even though it is 100+ every day, Ivy and I are wimps and like our pool water to be heated!! We aren't heating the big pool, the big kids would not be happy about that, but the hot tub is big enough to swim in and is heated up for us wimpy ones who like the water to feel like a bath!). She doesn't ask to go bye bye a million times a day or to eat every 2 seconds because she is just having fun playing and being a little girl! Lexi is so proud of her and tells her so, constantly. 
These little girls... I tell you.... ARE SO SWEET!!!
Me..... well, I'm a little taken aback! I want to put bubble wrap on her head... and pillows all over the tables, cabinets  and doors. She scares me to death! When you are a tiny tot on blood thinner,  just the tiniest bump leaves you with a shiner and a trip to the ER. I want to let her go, and I am, but I will be found 2 inches behind her, running, ready to break any falls!!! We have waited SO long to get to this point! It is so exciting! Just would be lots more fun if she did not have to be on anti coagulants!  Regardless, We are having the time of our lives just being a regular family! Doing regular things!! Even have some trips planned! We can't take Ivy to pre school, sunday school, gymboree, public pools, any group indoor play classes. BUT...... We can travel, we can swim at home, and best of all..... SHE CAN WALK!!!!! 















Our Real Life Super Hero!




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Thursday, May 23, 2013

Night & Day

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Oh the difference between our two Littles...


Ivy Joy is very much a free spirit! She runs her own show, floats her own boat, and moves to her own beat! She makes messes one would never imagine possible with just a tiny amount of food scraps. She is loud and when you ask her to be quiet she tells you in her loudest voice how quiet she is going to be and then continues telling everyone around her (who are making NO noise) to be quiet and to see how quiet she is being :)
She wakes up every morning with a smile, saying good morning mommy, I'm so happy, Im so hungry, Im thirsty too! Every morning! She wakes up early, skips nap and goes to bed early!

She has no problem telling us NO. And she does not budge for any amount of bribery or threat. 
I'm not walking without your hand mommy, I'm NOT!!! I don't want to! I'm not walking!
I'm not going in the pool mommy! I don't like getting wet! I don't want to get wet! 

She has a great amount of trust for us. She does not go to strangers, but she will stay with a babysitter and tell the sitter the whole while that mommy will be back soon. She will holler, Mommy don't leave, mommy I want to come too! But then she does fine and is happy while we are gone. 

She talks about food, eating and more food all of her awake hours. She would rather have a conversation about different foods than about anything else. She would be happy to sit in her highchair or stand in the learning tower all day, grazing on unhealthy snacks! She does not like milk. And she will tell you how much she does not like milk with her arms folded! 

She likes to take things apart. If something breaks.... it's no big deal to her! She just says I'm sorry, please forgive me and moves on. And if someone else accidentally breaks something, she still says I'm sorry, please forgive me.

She loves to go bye bye. From the moment she finishes breakfast she is ready to get dressed and get in the car. She doesn't care where we go, she just wants to go. And when we get back home and pull in the garage she says, I want to keep going!

She rarely plays with her toys. (unless her sister has it....) She has to be persuaded to play at all. 

She is silly. She likes to make people laugh. 
Yet she is serious, she does not like slapstick type humor. If her brother pretends to fall or run in to something or whatever, she will act very serious and ask you if he is ok and if he needs a hug and a kiss. Not even a crack of a smile! Yet if he did some slobber noise she would crack up! 

She does NOT like sippy cups. Not of any type! She never has. She likes big open cups and water bottles. She does not spill a drop when she drinks. She is very neat at feeding herself. The messes she makes are just purposeful messes. Hey, I think I will see if I can take this cooked bean and turn it in to an 8x8 finger painting on the table! Success every time! 
She likes to eat with chopsticks. She is very patient when learning new skills. She is not competitive. She likes to be the center of attention. 

She loves purses and jewelry. She loves lotion and bubble baths with no bubbles (She just likes saying bubble bath :)
She would rather shop for food than a toy!







Lexi is our rule follower. She is our perfectionist. She does not like to be bad at anything. She worries about things like being abandoned and being alone. Not having a mommy and a daddy. This breaks my heart!

She wakes up every night between 2 and 4am comes up stairs all by herself using her ladybug dream light, goes to the bathroom and then jumps right in our bed and falls right back to sleep. 

She likes to sleep late in the morning, take naps, and stay up late. 

She wakes up singing every morning. I can always tell when she is awake because I hear singing coming from behind my closed bedroom door.

She gets very upset if something breaks, even if it was not hers. She gets upset if she see's or hears of someone doing something that she knows is wrong. 

She would stay home for days at a time, never leaving the house and be as happy as can be with that. 

She does not like to act silly (she is SO proper!) but she LOVES slapstick humor. You can get the most amazing belly roll laughter from her just by falling and I mean even if it was not on purpose! She loves the old cartoon humor like Tom and Jerry and the old disney cartoons. She will laugh hysterically if you bump your head or trip! 
She looks in disgust at things like dirty faces, holes in jeans, spit bubbles, crazy bed head, anything dirty... (feet, hands and so forth) 

She could care less about food. She actually finds it to be more of a nuisance than anything. She would not eat breakfast lunch or dinner if it was not offered to her. She could live on milk. She would rather have a carnation instant breakfast drink for every meal! She does not like fries, would NEVER eat fast food and does not like meat of any kind. She is picky! Before she eats anything, she asks if it is healthy! 

She is quiet. She is calm and easy going. Unless she is crying... then she is 
loud! Thank goodness she is happy 99% of the time!
She loves to dance, jump rope and swing. She loves a good challenge. She likes to win.
She loves to play with her toys. 

She still prefers a sippy cup over an open cup. 

She does not like messes! She is a neat freak, folds everything or puts it on a hanger! She can even make her bed. 
She loves to help out. 

She loves to swim. She just learned to swim alone this week and she is now a total fish in the water!

She loves clothes and shoes and bathing suits! She would rather shop for a new dress or a bathing suit than a toy!










                                                                                     



They both are SO LOVING! So Affectionate! So kind! 
They are both filled with joy all of the time and they look out for one another. 
They both love to sing and to talk! They never stop talking! They both love Disney's Little Einsteins. They both love princesses, mermaids and Minnie Mouse! They both love to paint and go on the Merry go round! They both love hair pretties and perfume! They both love to have their hair blow dried and they both love all things that sparkle! They both love books! They both love sharing a room. They both ask for the other as soon as one is missing. They both love special daddy time!  They both love special sister time! They both love each other!
















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