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*