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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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11 comments:

Anonymous said...

I look forward to each of your blog posts. Thank you for sharing your amazing Ivy with us! I have to tell you that my Josephine from Hangzhou has a scrunched up nose expression that I am in love with too!

Cheri
Http://josephinecomeshome.blogspot.com

Sharon Ankerich said...

SO loved reading every word of how sweet Ivy is doing! Precious baby!!! She is the perfect baby and you are the perfect mommy!!! Blessings sweet friend~ she will do ALL things in His timing!!! Love and blessings to you! XOXO

deborah said...

Here's a sure fire way to get her to eat the dark green veggies. My two girls from China are LOVING this. I start with a little juice or water in the blender and add all the green veggies I can fit in the blender, along with a cut up green apple, a banana, perhaps an avocado, a pear, and some frozen berries on top of that. Then, I add just a little bit of honey or Agave to it to sweeten it up a bit. It tastes delicious and goes down easy and is sooo nutritious! Try it and see if she'll like it. I'm fairly certain she'd love it, as it tastes like a shake. :)

jaxgatormom said...

I am so glad you connected with a MLH group. After my son was born 8 years ago and we settled in a little, I helped start one of the first groups in Jacksonville, FL. I have been so blessed by these families and I pray that they will be a source of encouragement to you as well. I so remember being so concerned for my little guy when he was recovering and the littlest thing exhausted him. Praying for your sweet family and you as you love her to better health. So thankful she gained weight! That sure does help our Mama's heart! :)
Angela

Anonymous said...

I check frequently for updates and think of your family often. What a treasure all of your children are! It's a blessing to see how every one has embraced little Ivy. It is sweet to see how the two little sisters are bonding. Both are precious. My granddaughter in Phoenix was at PCH for a kidney problem but is well now. I'm glad you have found a support group and hope you receive a lot of encouragement. Hang in there . . . we're all praying for you! (P.S. Our other granddaughter is from China and is Lexi's age. She is very very sweet and Ioving and compassionate . . . but also has a stubborn streak like Ivy. So I totally understand what you are going through. Just keep doing what you are doing.)

Anonymous said...

So glad to read about a support group- I think they shall be of immense help-- God"s love and Blessings on the whole family! Cathy in Illinois

Chrissy said...

Thank you so much Mary for stopping by! Loved seeing her. She looks great! :):):)

Virginia said...

Gosh she's adorable! Don't know if I've commented in a while by I have been following along. So happy to hear about her weight gain. Three pounds is a big deal on a peanut like Ivy! Sounds like your sweet baby girl has her own agenda when it comes to the rest of her recovery.

Gin =)

Catherine said...

Thank you so much for the update Mary! It's wonderful to see how well Ivy is doing but it's also good to hear of the specific ways we can pray for her and her awesome Mommy!

Blessings friend!

bytheriver said...

Patience - You know that God has his plans. When I was concerned about our child's development soon after coming home, I learned that it sometimes takes a lot of energy to do one thing and the body waits on another. Also, Ivy needs the holding, its a physical need that was not met in her younger life. This attention stimulates her development so let her be held and/or carried. It will help her develop. She may be spending what energy she has on learning to talk and sign. Seems she is doing a lot of that. Our daughter did too, and 6.5+ years later is still a bit behind in small motor but is ahead in reading and vocabulary. I was concerned around age 2 that her emphasis was on talking and not on motor skills as she was behind then in gross as well. Now she is ahead in gross motor - she needed to develop at her own speed in her own way. Also, our daughter had not had something as serious as open heart surgery to recover from. Ivy's little body is probably healing in all sorts of ways that we cannot see, taking energy from her and using up the food she eats. I heard once it takes at least a year to actually recover from major surgery, even if you are otherwise healthy. So I'd say be patient as you are, carry her, hold her, don't push her and she will get there on her own time and at her own speed. She has had so much to overcome being post-institutionalized and having open heart surgery. It will take time. Its great that she is now smiling. Did not see much of that before. Still praying for your girl.

TanyaLea said...

I loved every. single. word. of this post! Seriously Mary, you had me smiling, praising, sighing, and crying all in one post!! I think the part that really struck me hard, was when you said it takes everything out of her to crawl across a room, and how she just collapses to the floor and sometimes stays there awhile, just 'recovering' from her efforts. Poor baby girl. Yet, she is still so sweet and content amidst her struggles. I know it's all that she knows... but still. I'm just SO glad she has YOU and your beautiful, God-serving, awesome family to love on her. I trust she will have a BIG testimony to share with others one day ~ she already does, but I know God hasn't finished with her yet!!

Keeping you all close in thoughts and prayer as you prepare for her surgery this week. May God surround her in His mighty hedge of protection as she goes in for this surgery, and may His hands guide and direct every single move that her team of surgeons make. HE is in control, and HE IS FAITHFUL! Amen!! <><

Love you, sweet friend! Give your baby girl a kiss for me...

OXO,
Tanya

 
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