Sunday, January 15, 2012

On the Mend....TAKE 3?!?!?

3rd time's a charm, RIGHT?! Oh I don't even know where to begin with this whirlwind of a time life has just taken us through. First of all, we so appreciate all of your thoughts, prayers, comments, love, good wishes, and concern for our family! Thank you!!! A friend reminded me that Mila's suffering was not without purpose....that so many around the world have been following and praying and watching God do miracle after miracle in Mila's little life. May all the glory be to him! Just as we felt we couldn't take any more, God swooped in and showed up big time for Mila (and for us)! He loves her so much, even more than we do, and that I just can't imagine.

Through this trying time, we've become closer as a family. Shawn and I have become closer as husband and wife, having no other choice than to lean on one another. Shawn has completely impressed me as a husband and father through these difficult times. He has always been amazing, but through all of Mila's surgeries and hospital stays, and unknown medical situations, he has held us together as a family. He has continually put himself last and made sure that all of his girls' needs were met before he even considered himself. He has spoken words of encouragement to me when I was at my weakest and never once voiced his stresses or frustrations because he knew I needed him to stay strong for both of us. He is an amazing man of God. I am so blessed to have him as my husband and our girls are so blessed to have him as a father.

We think that Mila was in such horrible pain with the chest tube in and that may be part of the reason she wasn't eating...or all of the reason. I had no idea how horrible that pain was for her until after the tube was out. I wish I would have known. One of my readers said a chest tube was more painful than a leg amputation for her....ouch. That put it into perspective for me :( My poor babe. So the final verdict was that this pericarditis was caused by the trauma of the surgery and it's unlikely to come back, but she will be on anti-inflamatories for at least 3 weeks to ensure that it doesn't come back. I think her system was so stressed from trying to fight off the UTI and with all the antibiotics in her system trying to process those that her body was unable to keep everything functioning properly and thus the pericarditis appeared.

Since being home, Mila seems to be doing well. I'm a nervous wreck wondering if she is okay or if the fluid is coming back. We really don't know the "real" Mila and her personality since she has been so sick since we have known her. Today she has been very laid back, napping well, and just all around happy and content. She is acting much like she did for the first day or two after being home from open heart surgery. But then I can't help but wonder if she's so laid back because she's not feeling well. But last time she didn't feel well she was very fussy and clingy and miserable....so I hope this is just her being healthy and happy.

Yesterday she wasn't eating great, but managed to eat about 2/3 of her typical calories. Today she ate almost what she normally would, plus some sweet potatoes that she loves. This girl LOVES anything that comes on a spoon! It is pretty funny...she's like a little bird opening her mouth so wide and if I'm not quick enough she lets me know! Her overnight sleep is so-so, but way better than it had been!! Praise God! She wakes up several times throughout the night but isn't crying in her sleep like she had been. Yesterday, since we had the go ahead, we tried some tummy time. Mila had forgotten, or so I thought, how to roll over from her back to belly. She lost a lot of strength and gross motor skill after the surgery (to be expected). But then last night in her crib she kept turning onto her belly and of course she can't get back to her back...that's enough to make me worry all night long!

Tomorrow we have a ped follow up here in town and a chest xray. We are also going to hear back from the ped cardiologist to see if he can squeeze us into his full schedule for an echo this week. If he can't we will be headed back to Pittsburgh. Mila also has a follow up appointment at Shriners and her first eye exam (that takes months to get into!), and hopefully a reschedule of her early intervention evaluation so we can get the much needed services started! So it's another busy week for us, but we are just hoping and praying that Mila continues to be fluid free and on her way to good health FINALLY! We are keeping a close eye on her weight for any fluid retention as well as having her closely followed by her pediatrician and cardiologist.

Here is a picture of a 60cc syringe next to a 5cc syringe. Mila has 72 ounces of fluid drained from around her heart...that's almost 3 ounces! When you think her little heart is only as big as her little fist, that is just crazy! I wish they could have given us a better idea of how long the fluid had been building...they did say it is possible that it could have happened very quickly, and even likely that happened because of the huge amount that accumulated during the first night in the hospital (in addition to the large amount they had already found the night before in the ER).

Here are a couple pictures of Mila when she was really puffy...3rd day of our stay.



And just 24 hours later.....


I show those pictures only to prove how amazing our God is and to show you that your prayers have played a big role in Mila's recovery. She was still a little puffy when we left the hospital, but looks like herself today! And here are some pictures of our little miracle girl since we've been home!





*God is good, we are blessed*

16 comments:

  1. Hoping and praying that Miss Jelly Bean is on the road to a pain-free and quick recovery.

    I know what you mean about the "bird" reference, my daughter was like that, too, so much that I called her "Bird" for years!

    Take care, Basiles, only good news from now on. Milestones met, therapies gotten, and ZERO fluid build-up!

    Sue M.

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  2. Soooo happy to see her smile. That girl is absolutely beautiful! Mila's best days are ahead and she has you/Shawn and God to thank for giving her such a bright future. What an incredible gift. I look forward to seeing her grow! Thank you for sharing your journey with us.

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  3. Thanks for taking the time to update us, your readers. I know you guys have your hands full taking care of your sweet angel girls!
    I have to say, that due to abuse in my past I don't easily trust men--esp. (obviously?) those I don't know. But when you wrote about your husband, Shawn it touched me. I'm so glad your girls have a daddy who will never cause them harm and who love them beyond measure. He sounds like a wonderful husband and father. I don't even know you guys but I would trust him--and THAT is saying something lol! I hope he takes care of himself as well as his family... I'm glad he has the Lord to lean on as well when he feels stressed or overwhelmed. You two are awesome parents for your beautiful girls!
    I gasped when I saw the photo of sweet Mila sooo puffy and still. Just LOOKING at that photo was scary for me--a reader--so I can only imagine how concerned YOU guys were! So glad the prayers are strengthening you all! The Lord is working miracles for Miss Mila-bean and your entire family. What a joy to witness!
    How's sunshine girl Zoya doing with all this? Still smiling no doubt, lol!

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  4. So happy to see Mila looking so happy and healthy, and what a beautiful photo of Zoya and Mila playing together!!!!

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  5. Thrilled to see this happy post and beautiful pics of your girls at home. The one of Zoya and Mila together on the floor is just too precious for words! Yes, you are indeed blessed and God IS good!!! (((HUGS))) and prayers for your busy week ahead!!

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  6. Amen! Does my heart good to see that sweet smile again! Can't wait to see her and hold her1

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  7. GOD will always lead you on HIS path, I have always spoke what a strong GODLY woman you are, and your daughters are following in your footsteps! I am so glad you have a wonderful husband that lets your light shine bright. Hold each other tight! All our love! Keep traveling each day I am sorry how hard they have been.

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  8. Her story is simply amazing. God is so good and Mila is seriously TOO cute. So happy that she is feeling better. Thank you for keeping the "rest of us" up to date on everything. So many prayers were said for her by so many people. :)

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  9. I just wanted you to know that your journey...your blog... every word you type that I can read...touches me to my very soul. Mila is so beautiful and we pray daily for all of you. Thank you so much for sharing her beautiful face with us and we continue to pray for healing!

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  10. Glad to hear you have affiliated with the Shriners:) My husband is a Shriner and I know firsthand all about the wonderful things they do and how much they care about children. I have been lucky enough to tour the hospital in Erie. It's quite a place with a lot of exciting medical innovations.
    I love seeing the beautiful pictures of your girl--thank you. She is precious and blessed to have such a caring family, as you are equally blessed to have these two angels in your lives.

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  11. AMAZING! The difference in the pictures between the hospitial and now are so huge I can't imagaine how big it must be in person. That baby looks so good! You can just see it in her little eyes!
    You are a very lucky lady to have such a sweet man. You have to remember to tell him how special he is often and for no good reason. ;)
    He's pretty blessed to have you too but you two together are the real winners for having those two sweet girls as YOUR babies! I am just so looking forward to hearing all the updates on these girls and watching them grow. They amaze me and serve as such a strong reminder to be thankful for my own healthy child and all the little things we sometimes take for granted. Mila's whole story has been such a testament to how powerful our Lord is and how He has a divine plan for everyone of us. Your words always tell it just perfectly too and my spirit is convicted with every blog post. I hope you don't ever decide to stop blogging!

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  12. Praising God for Mila's recovery. The picture of the two girls playing with the piano together is just precious! Thank you for sharing your story with us! Praying for Mila's continued healing.

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  13. Ohhhh so WONDERFUL to see you HOME!! And the SMILE is back!!
    THANKYOU LORD!!!

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  14. Hi Sarah,
    As a follow-up to my previous post, I have been sharing your amazing story with my husband, who is equally riveted:) He asked if you were in need of a sponsor for your trip(s) to the Shriners Hospital. I assume at this point you either have one, or otherwise are not in need of one, but he offered his sponsorship just in case. Take care.

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    Replies
    1. I emailed your sister about this! Thanks :)

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