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Wednesday, June 27, 2012

Baby Bumblebee

Pin It  I so agree, Ivy is our little bumblebee! And the past 4 days have confirmed that little bumblebee is the perfect pet name for Ivy Joy!







 We were told by our doctor before leaving the hospital that they have now done everything to get Ivy growing and healing. 
She came home from China with a 1mm pulmonary artery! It is now 7mm. 
She came home with some pretty damaged lungs and while they have a long way to go, they are healing little by little and they will one day be normal.
She came home with an under developed pulmonary valve and it has since been replaced with a donor valve (this is the one that has caused the RCA occlusion).
She came home with her Aorta and her Pulmonary Artery in each others places, and they have since been replanted in the right places. 
She came home with a huge VSD (hole in the lower part of her heart) and it has since been patched. She has a pacemaker. 
She is on Enalipril, Carvedilol, digoxin, lasix, asprin, and calcium magnesium. 


Doc said that if we came home and we saw that she was not back to her best place of health and energy by the end of 2 weeks.... then there was a problem. No secret what the problem is now, it would be that something had to be done now about that Right Coronary Artery. They would only do something in an extreme emergency, life threatening. They would use a mamary artery. 



The short and long-term outcome of surgery is not known and thus has largely been avoided. 




The day we got out of the hospital was the start of something so amazing, so beautiful! I have been too busy just taking it all in to even get on the computer. But today I made sure that I got on because you are all the blessing behind the miracle. They prayer that made this happen. The love thats held us up. The body!




Ivy walked out of the hospital all the way to the car holding my 2 hands. She went right in her tower when we got home and just looked around and giggled. She crawled around, walked around with my hands held just for confidence. She could totally walk if she had the confidence, and she will have it soon. She never stops! She is happy! She is full of laughter and she is feisty again!! Woo hoo! But in a great way! And she is sweet and sensitive and so tender! She has a really gentle heart. When the baby next door in the hospital would cry she would hold a chip or cracker or whatever she was eating, towards the door! She likes to dominate her mama but she loves to share everything else. (except her stroller... don't anyone even touch it.. her carseat, her high chair, or her shoes :) There is not doubt that this new mix of meds and the larger pulmonary artery are working! We pray that those little vessels growing around her occlusion keep growing!!!




She wakes up smiling and goes to bed still smiling. She does not ever even act like she is tired. She just falls asleep when she is. Im telling you, she could probably make it all day without a nap!!

Here she is right now, I am typing away, she was crawling around and next thing you know





Early next week we head back to PCH to see Dr Pophal. I cannot wait until he sees her! Pin It

Friday, June 22, 2012

God's faithfulness is steadfast

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Yes it's a little obvious that she is always          eating!!!!!

 This Tiny little hand/arm has 11 holes in it!! And the IV went bad! 

 10 minutes of play requires 20 minutes of rest!




I am thrilled to tell you we could be going home tomorrow!
And I really don't need to tell you how ready for that we are!


The day time doctor here discussed with me that even though repaired, Ivy will never have a normal heart. Had her surgery been done at birth, her lungs would not be the way they are today, but some some of the other long term issues are because Ivy's heart condition was so complicated. Did he think she was born here and we chose to wait? Goodness I felt that way! 

And then my doctor told me that Ivy's Right coronary Artery is indeed blocked completely due to compression from the pulmonary valve implant. BUT...Ivy has blood flow! Her little body has grown new blood vessels and some blood gets through. Much less in a stressed state and a little more in a resting state but the left side of her heart jumped in and took over. Amazing considering she has enough trouble on the left side of her heart too! 

Praise be to God!!! They do not want to repair anything at this   time. She will gradually go up to 3mm of carvedilol. They should have her there by tomorrow and then we can go home!!!!!!!!!!!!!!!

She does still has that very high pulmonary hypertension and there is no medication they can try and treat it with at this time because they would all put stress on the right side of her heart and she can not handle that. So this means that she will continue to have lower than normal energy, and tire easily. The sad fact remains that Ivy's lungs took a huge blow by waiting almost 2 years for surgery. They still have lots of damage. But she is a 2 year old. They do repair themselves, it just takes time. They have faith that we will see better lung function in the future! Praise God!

We will start her in rehabilitative therapy as soon as we get home. They told us that being on ECMO is like being dead for however long you are on it. Your whole body is resting and machines are keeping you alive. Apparently kids who never had great quality of life due to illness, prior to ECMO need more time and more therapy to get their brains to believe that they are capable of doing things and pushing themselves a little. 






 Life is not measured by the number of breaths we take;But by the moments that take our breath away


Long term and even short term have not been discussed yet. Her limits have not been discussed either. If her doctor gets out of surgery before 9pm he will visit to discuss the rest. If not then he will stop by in the morning. 

And thats all for now. We came with the intention of going home with less Pulmonary Hypertension and tricuspid valve leakage and we go home with the same issues, new knowledge of more issues, new medications, a lot more scars and holes on her tiny body and a very grateful heart that 

God's faithfulness is steadfast!
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Thursday, June 21, 2012

EAT

Pin It That is what Ivy was signing and saying the second she woke up from anesthesia. She did well for the procedure. I was terrified when the anesthesiologist explained how much more dangerous it was for him to put someone in her condition to sleep. And yet she made it through 2 hours of sedation like the champion she is and woke up before they even got her back in her room. She was immediately fussing and asking to eat so I got out her food and water and she gobbled! Normally you would wait an hour or 2 to eat but she charmed the nurses and got her way. She did not throw up! Yay!


The results of the test have not been discussed with us yet. We will meet with her doctors in the morning instead of tonight. I overheard them say that they got her heart rate up to 150 and had to stop there. 
I will be back tomorrow :)     Below is a video taken the day we arrived. She was being so patient!!! 
video
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Wednesday Update

Pin It It is Wednesday, right? My battery died before I could finish this post, so now it is actually Thursday. It seems that when Ivy is in the hospital it all feels like one long never ending day! This update needs to be quick because my battery is about to die. Thank heavens for a sweet friend who is on her way here with it now! Thanks Kristy!! See, I told you I typed this yesterday!
Wednesday Ivy had a great night! Comfortable and content as long as I was holding her or touching her. We did not sleep! They have been watching her so close that is seems someone is always in the room. Her x ray last night revealed wet lungs so sure enough the x ray machine arrived in our room at 4:45 AM for another picture! Man, I had finally fallen asleep and they kicked me out of sleeping beauty's bed! But we survived, and we are happy to know they watch her so close! Why the wet lungs?? Wish we knew! She is still requiring oxygen. We are trying to wean. Her heart is very enlarged and she is under a lot of stress just being here so they are thinking it is possible that is why she did not need it at home but does here. She is not stressed out at home. Also those wet lungs couldn't be helping much.


Fast forward, It is now Thursday and I am adding to the post that never got posted :)
Yesterday was a hard day. Ivy is just so sad and so scared. She remembers this place and she doesn't like being here. She keeps a stoic face at all times and suspects needles and discomfort from anyone who comes in our door. She had 2 of my sweetest friends standing on their heads last night trying to get her to smile, laugh, grin, anything but she was like a deer looking in to headlights, just so painful to watch. My heart just breaks. She keeps me very close by at all times, such a cuddle bug. She feels safe in my arms so thats where she stays! I have not left her room except to take her for wagon walks down the halls and she is with me. I want her to have one thing she can count on and trust for sure, I will be here every second. She is eating well and sleeping well now. She has caught my yucky cold and I think her throat hurts because she is not drinking water like she usually does. All very minor things..... I won't go on to tell you that she has not pooped since Monday morning, oops I just told you!
My spirit is up this morning, can you tell? I just know today is going to be an effective day. Yesterday we just sat here and did nothing but today at 1pm, Ivy is having a stress test done with nuclear medicine. Sounds fancy doesn't it. An MRI might have done the trick but she has a pacemaker so she can not have an MRI. Instead they will do an even more effective test to measure the severity of her RCA (Right Coronary Artery) occlusion. The doctors are in agreement that this has been going on since she was here last time. The occlusion has to have happened when they sewed her up 5 days after her surgery. 
Here is how the test works

A nuclear heart scan is a test that provides important information about the health of your heart.
For this test, a safe, radioactive substance called a tracer is injected into your bloodstream through a vein. The tracer travels to your heart and releases energy. Special cameras outside of your body detect the energy and use it to create pictures of your heart.
Nuclear heart scans are used for three main purposes:
  • To check how blood is flowing to the heart muscle. 
  • To look for damaged heart muscle. 
  • To see how well your heart pumps blood to your body.
Usually, two sets of pictures are taken during a nuclear heart scan. The first set is taken right after a stress test, while your heart is beating fast.
During a stress test, you exercise to make your heart work hard and beat fast. Since Ivy can not run on a treadmill, she will be given medicine to increase your heart rate. 
The second set of pictures is taken later, while your heart is at rest and beating at a normal rate.

I was concerned by the word nuclear, but did get reassurance that the radiation is equal to the amount you would get from a regular x-ray.

The hard stuff for mama heart today. You know me by now, I crumble at the sight of my sweet girl in pain! Ivy's nose is totally  stuffy and bloody today, she has a cough. She caught my cold! She had to get poked again today, checking her electrolytes. Her IV went bad, she needs a new one. Her hand is swollen. She has to go all day without food and water again since her test this afternoon is done with full sedation. She has to get intubated again. The last one was able to come right out but we noticed she is aspirating again when she cries and when she drinks more than a sip or two at a time. Bummed about that! 

So where are we with all of this? Well they don't know yet. Obviously we need these test results to really know. But what they did say in rounds this morning is that they NEED to see the left side of her heart compensating for the deficiency on her right side. They need her heart to have adjusted to being like this right now and kind of just know how to do it. Remember how long it took her to get out of this hospital last time? Remember all the times she was up then down then up then down..... Her RCA has been in this state since her repair. Ughh arwslkddjnfdjnvjdnfenfguie how could they have missed this? Darn!!!
Any way, I'm not going to cry over it now. Truth is, the pulmonary valve (homograft) that they used was too big and it was all we had and even if they saw this earlier it wouldn't change the fact that the damage is done, it is not something to blame on someone, everything was done correctly, this is just an unfortunate result and we need to figure it out.

The reason they need to see her heart able to compensate is that she is just too small for this surgery. Her veins are just not there. She is tiny, her veins are teeny tiny. This kind of surgery is something they do on adults. Not babies, toddlers, little kids, even big kids. She might be a little kid when she ends up having it done, but right now she is the size of an infant (they poked her hand/arm 11 times to insert an IV before moving on to the next arm! (she was asleep) and the doctors say they just wouldn't be able to work with her veins. 

The correction for this problem would be to do CABG. Coronary Artery bypass grafting. 

How this works is  a healthy artery or vein from the body is connected, or grafted, to the blocked coronary artery. The grafted vein bypasses (that is, goes around) the blocked portion of the coronary artery. This creates a new path for oxygen-rich blood to flow to the heart muscle.

So we continue to pray that they find her heart to manage the stress in its own resourceful way. We pray that being on these new meds for a few days now helps too. We pray that they can then come up with a cocktail of medicines that will keep her heart healthy, or as healthy as Ivy's special heart can be until she is bigger and can get good results from this kind of surgery. I also pray for all of the amazing new treatments and corrective surgeries that will come out between now and then. I am confident that there will be other ways to correct RCA occlusion in the future. And I selfishly pray that we can go home very very soon!!!!!!!!!

I am so touched by all of you in the blogging world who have given up your time and other things to stand in the gaps and pray for our daughter during this time and some of you never having stopped from her very first surgery. You are all a part of this childs life and we are blessed to call you our friends!!! We have felt so much comfort and peace knowing that Ivy is being lifted up from all over the country and even out of the county! Thank you!!

I will try my best to post the results of this test tonight. All of Ivy's team will be having a meeting this evening to discuss the results of the scan and the plan for her future. We love you all!!!
                                    Ivy on the morning of surgery day




 Getting ready to go in, mommy and daddy made me look silly in these giant pants! We could add shoulder straps and make it a jumpsuit :)
                                                                 Last night

                                                                      Today
                               A semi smile, the first all week!


                  Ivy right now as I typed this!





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Tuesday, June 19, 2012

Ivy update

Pin It It has been a long day! Even longer I'm sure for our baby girl! She is doing so great, guzzled down a whole container of chocolate milk practically in her sleep and didn't even throw up! Ivy drinks only water at home. I sure hope that drinking milk and smoothies and pediasure will be in her future at home!! She is on oxygen right now but we hope to say goodbye to that by morning. 


And as for her heart, Good and not so good.
They were able to do everything they went in to do. They made her pulmonary artery 4mm bigger than it was. Praise God who can do all things. However... It turns out that there is a bigger problem.
You see even after a successful increase in the size of her pulmonary artery, her lung pressure remains very very high. The drastic leaking from the tricuspid valve, was left unchanged.


I have needed time to grasp all of this. To remember, that Gods plan is and will be amazing. And that He doesn't want Ivy to go through anything more, and He will get her through it. 



Do you remember when we were waiting for the donor organ? Well, Ivy couldn't survive much longer without surgery. And still the size she needed was not coming in. The homograft they had was several millimeters bigger than he had hoped for. But she couldn't wait any longer, so, they made it work. 


And now It is squishing her coronary artery. 


It looked fine in the pictures they took after she came off ECMO. But her chest was still wide open at that time. So they are thinking that when they closed her up, maybe it  caused some unknown  compression? 
Regardless, this new finding sure does explains the tricuspid valve leakage and the hypertension. The lack of energy, heck she should be sleeping all day! But she wasn't, because she's a miracle!
So while it was too big of a homograft, it did save her life. 


So tomorrow they will do a CT scan to see if their finding is indeed correct. And if it is, they will need to discuss the plan to open her heart up again and replace that valve.. again. 


And while I can hardly breath when I envision her going through all this again, she is sooo much stronger this time around. 


No parent wants to see their child in pain, discomfort, danger, or suffer! So I won't make myself out to be something I'm not. Im human, I'm mommy, I love this girl. I want her to be done!! 
None the less,  since I'm just a human, just a mommy, just a regular gal.. I don't know what to do or how to fix this. And God blessed us with a doctor who does. A doctor who eats goldfish out of our daughters hands, looks at her with a twinkle in his eyes, promises her he will do everything he can for her, honestly cares for this little girl that he helped us bring home from China. I will never forget the day we sat with him and he looked at her file and her picture and then her file again and he told us that he would be honored to be a part of Ivy's healing. He didn't sugar coat anything. He had a very old file to look at and it was packed some seriously complicated funky heart business. And he smiled and hugged us and said, We can do this!!! And we can!!! I just don't always like the things she has to endure to get to the next place. Life does this. And we become better people because of it. But it's my baby.... I would trade places with her in a minute! Fix my heart not hers. And then I get back on my reality box and take a big sigh of relief that Gods got this, He has it all orchestrated and it will be marvelous! 




So I'm on my knees tonight, thanking the one who knows what he's doing and knows what is best. We will find out tomorrow how soon this has to be done. Tonight, I'm so very blessed to say I am snuggling in the hospital bed with the cutest 2 year old on earth and she is my daughter!! Pin It

Ivy update

Pin It Its 3pm and she is still in the O.R
We were told her lung pressure was dangerously high and they may not
Be able to work on he left pulmonary artery. She is stable. She is in Gods hands and I'm trying really hard not to worry :)
I can't wait to kiss her chubby checks ( the only thing chubby on her) and give her the drink of water she was begging for all morning!
Only God can make it possible for those pressures to suddenly drop enough to follow through with Docs plan. We know He can!! And if He has another plan, I remind myself that He does know best, He does! I stand before him now, will you join me? Pin It

Monday, June 18, 2012

Surgery Is Tuesday ~Go Team Ivy!!~

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 Have you been praying for our baby girl??



I ask because we feel them!

And we see them!

                                                                           



Ivy felt like this.....
                        And this....
                                                
                                          And just because it should not be possible to look this cute when you are this upset... I'll show you this last one!




 But that was the last time we would see those expressions!
 Because now she is HAPPY!!!!!!!!!!!!!!!!

 And she is less swollen!!!
 And she seems to know that something great is on its way!! Something that is going to make her feel better!!
 Tuesday morning at 9:30am Ivy will have her surgery. We hope to do something great with that tiny tiny valve. We pray that her lungs can handle this. We pray that her Pulmonary Hypertension can be at least cut in half! We pray that her body can handle all of this, she has a little cold right now so we need that to be GONE! 

Please let us know you are praying! You have no idea what peace it brings to know that we are not the only ones who will be lifting our daughter up to The Great Physician on Tuesday. We love and appreciate every one of you! We know you care about our little peanut, we thank you for that!

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Saturday, June 16, 2012

Surgery for our little peanut, here we go again.

Pin It I am cutting right to the chase on this post. My sweet Ivy Joy is not feeling well. 





She is puffy again as you can see in the pictures I just snapped. She was so sweet to wait patiently for me to snap these when all she really wanted was to fall asleep in my arms. 












She feels lousy!
The last 5 days Ivy has been experiencing some severe ~bloating~??, in her belly. I don't know what else to call it, or at least I didn't know. But it had me very concerned as her tummy continued to grow bigger and harder and her little belly button even popped out. The swelling began to come back in her legs and feet and face. Not near to the extent that we had in the past, but enough to have me making phone calls.



On Wednesday evening we headed to Phoenix Children's Urgent care. I wanted someone to look at her and tell me her belly was normal. I searched the Internet for hours trying to find something, anything like this and there was NOTHING! Well.... the doctors had not seen anything like it either. Not related to the heart, not on a baby that was otherwise looking so pink and happy and down right adorable... just sayin~
So they called my cardiologist, took some x-rays, tried to draw some blood from each hand, then her foot, then mommy put her foot down and said stop! Ivy's blood just would not flow! 
The x-ray showed a whole lot of fluid, a low liver, and left a lot to be questioned. So we headed home for the night and we spent the next day at the hospital. Ivy was 4 pounds heavier than her last appointment. And it was all fluid! Or mostly fluid anyway. Her belly was as large as the day before, her feet fluffy as can be. We had increased her lasix to 3 times per day but they knew something else was wrong. The concern was that she was having kidney failure. Our cardiologist was very very worried about that. After her echo and her blood work, drawn through ONE poke from the neck by our little angel nurse J.S who we absolutely love, we waited. And when the results came back our doctor was both relieved and sad. Ivy's kidneys are fine! Praise God!!!!!! But we are so very sad to say that she has left heart failure and needs surgery.... next week. 




Ivy's tricuspid valve is leaking so heavy that the blood is pouring out and falling in to her stomach and legs. She is weak, not walking, not able to do much of anything at all because she is in heart failure again. My sweet baby is amazing. The fact that she is eating (a lot), drinking, playing while laying down or sitting up, talking and engaging..... all amazing!! The 13 year old and 18 year old I spoke to at the mended little hearts meeting told me that when they had valve leakage before a valve replacement they could not get out of bed. The moms who's kids went through valve issues when they were younger said they had feeding tubes until they were 5 because they did not have the energy to eat! Yes, she is amazing, yes she has been through a whole lot and yes she will get through this too. We all will. She is such a special, amazing little girl. She is a mystery to the doctors. The way she looks so good, and then you see her lab results, and there is no way to deny that there is a God, and he loves this child and he keeps his promises and he carries her through everything!! Because while some may see her story, in an orphanage until almost 2 years old and all alone for so long, so sick without anyone. But we know, she was never alone, God has carried her, He has loved her, He has protected her, He has surrounded her with the right compassionate hearts and now the right family and the right brothers and sisters standing in the gaps, storming the gates of the heavens with prayer and petition for her!!!! He knew then and He knows now and He knows all!!! I find great peace in that!
So we were able to come home. The nurses were surprised to see her coming home... she is sick. But our sweet. awesome, oh so loved doctor knows Ivy. He knows she does better at home. He knows we wouldn't take an ounce of chance with her health or her life and we would be at that hospital in the blink of an eye if we felt there were any changes with her. So that's where we are.
I should hear from the hospital by tonight about the day and time Ivy will have surgery. They are thinking Tuesday but hoping for Monday. It is all about finding an opening in the O.R. 
We trust God, He knows the day and time and He knew this was coming all along. We have only been home 7 weeks but it has been 7 weeks of bonding and loving and healing. 
Now she is ready for whatever is next. They need to get a look at her lungs before they know exactly what they will be doing to her. 
He pressures are so so high. 
We need to make sure her lungs aren't too damaged from all of the time she waited un-repaired. 
Will you please join me in prayer that this is not the case? 

Thank you! Pin It

Tuesday, June 12, 2012

Mended Little Hearts and a whole lot of randomness

Pin It Tonight Mr S and I are headed to PCH for our first support group meeting for parents of children with congenital heart defects. I hope my expectations are not too high because I am really hopeful that I am going to come away from there with a whole lot of support and a whole lot of insight and maybe even a new friend or 2 for our little peanut! 
They offer child care so the plan is to bring Miss Ivy so she can make a surprise visit to her night nurses in the PCICU and then maybe make a few new friends while mommy and daddy are at the meeting! 







So now for the random this and thats!


Last week, between the 4th and the 7th of June, Ivy had regressed physically enough that I began sending cry's of fear to the heavens asking for endurance, healing and stamina, energy and strength, will and grace for little Miss Ivy! I was beside myself with concern for this little girl who still seems so very tired and so very weak. 



I am guilty. 
I am guilty of wanting for her, things that she may not want right now. I want her to walk and run and get into mischief. I want her to make a mess, a lot of messes. I want her to follow me around, follow her siblings. I want her to jump and skip and play chase and hide and seek! I want her to be a normal 2 year old. I am guilty. 




But I am learning. I am learning that these are not things on Ivy's list of to do's at this moment. She has spent almost 2 years watching and she is quite content with that. I do not think she will be content with that forever, but right now, she is. She is content with being held.... a lot!! And she is content with resting on the floor instead of standing up and running on it. She crawls when she wants to crawl, and she is a very good crawler, but most of the time, she doesn't want anything or any place, bad enough to crawl there. And when she crawls (she went 3 days last week without crawling!) she looks so exhausted. Like before surgery... no, I take that back, worse.
She has this look on her face like she is in the last few yards of a race. She collapses when she gets to where she was going. She lays down, sometimes for long periods of time. Can you picture this? Makes me tear up just typing it so you can imagine how my heart breaks when I watch it.



I am guilty. I read stories of other heart babies just bouncing back like athletes! I realize that my child is different. She can't exactly bounce back to where she was, because she never was.... healthy. She was tired before and she is tired now. So I guess she did bounce back. Now we just need to bounce forward. And keep going forward. But currently, she is kind of stuck. Physically that is. Not mentally, not emotionally, not cognitively, not in spirit. Praise God for that. I expected her to be off like lightening once repaired. I expected her to want to catch up to her sister. Truth is, she loves being the baby! She loves her peanut shell and asks to be carried in it. She loves being held. She loves sitting on the couch and watching disney junior! She loves sitting in her highchair and her stroller and her carseat and her wagon and her bike seat, anything that carries her! She loves music! She loves kissing. She loves being kissed. She loves to give affection and receive it! She loves toys that make music and noise but is terrified of toys that travel on their own! She does not love exercise!!! Of any kind!!! We have to practice tough love to make sure she does get a little each day...... and as I have mentioned before, if Ivy doesn't want to do something.... Ivy is NOT going to do it! I can try until I am one hair short of bald and she will still go to bed not having done it and I will be going to bed very very tired!!!! This explains the 3 days she went without crawling or standing or walking (with help). 3 days!!! I took her to the pediatrician because I was sure she had something terribly wrong with her!! Nope! Lungs were super clear, ears were great, no sign of anything at all being wrong with her! She just didn't want to. And she is STUBBORN that way! 


Her team and her family have all come to the conclusion that Ivy ticks on her own clock! She has her own agenda right now and it does not involve doing anything physical on anyones time but her own. She knows what she can handle and while her physical therapist has confirmed that she has all the foundations mastered to be able to get up and WALK. She lacks the confidence, the endurance and the will to do so. And I need to have the patience to see that and wait nicely! 
Our pediatrician (substitute) our real Ped is on maternity leave, says she is very smart and very stubborn and and she will be harder to rehabilitate due to this combination. She knows what she wants and what she does not want and its a waste of time trying to force her. Give her floor time twice a day, where no one is allowed to pick her up. Make things interesting around the house. If she wants it, she will go for it and if she doesn't, then it's just sit on the floor and hang out time. We had already been doing this method and we are sticking to it. We are seeing that she has more energy and desire to be active in the early evening. That is when she will do her ~tricks~ and amuse mommy and daddy! She is a baby stepper. And we are getting used to that. She likes to take her time, she likes to have full confidence before making any big moves or changes. She likes to decide what she will do and when she will do it and she doesn't like us to make a huge fuss when she does it!  She loves clapping and praise, but not too overdone...We like making a huge fuss when she does things... but we have toned it down for our girl. I have no doubt there will be a day when she requests we make a huge fuss over her milestones. For now we respect her request for restraint on our part :) She's just so darn precious and amazing! It's hard not to throw a party every time she makes a move!



Big changes we have seen is that while we thought she was incredibly attached and bonded, and trust me she was, but the depth of her love and her trust has amazed me lately. She just is so much more comfortable in her own skin. She does not hold back her smiles or her laughs. She hugs me with her whole body, melts like butter in my arms. She speaks with her eyes and her facial expressions. She just looks at me and lights up. She loves me so much more honestly now and I love her to all the depths of the earth! 
She loves attention and does the things that make that person smile! Cassidy taught her to sign. And when she is in Cassidy's arms or wants Cassidy's attention, she signs up the wahzoo! 
Rylee is our funny, and wacko and always being silly girl. She's just FUN! When she wants Rylee's attention she makes a big fake laugh and makes her sassy face (lips pulled out nose scrunched up) for kisses! I could go on and on but you are probably bored!
She adores Lexi. At night she dives right out of my arms into Lexi's bed. We read stories there in Lexi's bed, Ivy's face all lit up like a christmas tree, just so happy to be here! And they kiss each other and off to sleep they go. Both in bed awake at the same time. She pops up and looks over at Lexi's bed and Lexi says. "Im right here IBEE" and that's the last sound I hear. They fall asleep just like that! (Until Lexi wakes up screaming that she needs to go potty in the middle of the night and sometimes wakes Ivy up and mommy has to get up and then I have 2 awake crying babies and I'm tired and I'm grumpy and I wish I was a tomato or an orange or something that wasn't being disturbed in the middle of the night). And then they snuggle up in my arms and kiss me goodnight and go right back to sleep and I confess those feelings I was just having of wanting to be an orange or a tomato and I go back to bed :) God is so very good to me! So very good!!


She is talking! Repeats everything! Says a good 40 english words! Still says thank you in chinese and calls all small children big sister in chinese! She is signing. She is happy!!! She is sleeping all night, still!! She naps like a champ! She eats 24/7. She is learning body parts and animals and colors and foods and a whole lot of everything, all at once so sometimes she gets a little confused haha! 


So there you have it! Is it hard? Oh ya, it's pretty hard! Mostly I make it harder because Im always second guessing myself that I might not be doing something right. I just love these kids so very much you know! And I want to be everything God designed me to be as a mother. 


Would I do it again, knowing it would require a very long hospital stay, a very hard recovery, a lot of unknowns, a lot of appointments and so forth?? Oh YES!! I would do it again indeed. If I won the lottery right now, I would use it to bring home more children who were considered ~no hope~, unable to repair, less that optimal survival rate, hard to place. Not because I'm a hero, not because I'm cool, not because I have nothing else to do, not because it's super easy and always fun. But because what I have now is so much more than what I had before. I have another daughter! A more perfect family! A child that God called me to, knowing she was intended just for our family and our family just for her! Because I know now that I can do this and use my story, His plan, to encourage others to do the same. To golify God! God has equipped me every step of the way and he continues to equip me as we continue this journey. And I love her more than life itself



Last but not least~
As you know, Ivy has been having trouble gaining weight. She has not stopped eating since she was put on the full fat diet and yet she had that one pound loss last appointment. Bringing her to an all time low weight that I don't even care to share :(
I called out to a few of you for prayer in that area as I became very weary of her health and recovery without weight gain. Well I am thrilled to tell you that Ivy has gained 3 pounds since that low weight 2 weeks ago! My soul needed that as much as her tiny body! And based on the amount of butter and calories she continues to consume, I am very hopeful that we will not need to look in to GI issues at her next appointment on the 28th. Praising God for that!!! I do think it is time to look in to iron count though. Dark green veggies and red meat do not enter her system :( And getting her to drink anything but water is not happening either! Yep she keeps me running in circles doesn't she? And good thing she takes my breath away every time I look at her so I have no problem going through the motions ~again and again~ :) 






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