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Wednesday, November 28, 2012

Happy Thanksgiving

As we near the one year anniversary of the beginning of Addie's heart journey, I wanted to post Scott's testimony from Thanksgiving. He was one of 3 Wilshire members to give testimony at the Thanksgiving service. He did a fabulous job. It is a great reminder of where we were one year ago and where we are today. Happy Thanksgiving!

Sunday, November 18, 2012

6 months!

6 months has been a very good one for Addie. She rolled over a few days after she turned 5 months old, her two bottom teeth poked through, she says baba, mama and dada, and she had her second surgery and flew through recovery. I should also say that she actually says "mama" to me when I walk out of the room or she wants to be picked up. It melts my heart, for sure.  It has taken Addie about 3 weeks to get back to her pre-second surgery self. I think a lot of it had to do with the virus she got a couple weeks ago, but she has mostly returned to the happy baby she was before. We have yet to start solid food, but that is something I plan on doing soon. We are still waking her up to eat in the middle of the night because she lost about 10 oz when she was in the hospital for the virus.  As we go into this Thanksgiving holiday, we feel we have so much to be thankful for. Not just this week but always. These 6 months have been nothing short of amazing. God has definitely been listening to the prayers of all his people. Thank you! 

Sunday, November 11, 2012

We are home!!

We got home yesterday around 3. Yay!! Addie was so excited when I got her car seat out of the car and she saw our house. She smiled for 10 minutes, I think. She has been in much better spirits since we have been home and is definitely on the mend. Thank you all for your prayers and support. Your words of encouragement helped so much!

Friday, November 9, 2012

Still here

After 3 full days in the hospital there still isn't a definite answer to what is going on. They are still leaning towards bad reflux. They think Addie might have had a virus earlier in the week that might have irritated reflux. Weird since she really has no previous history of reflux. She was on IV fluids and Pedialyte for about 26 hours day before yesterday. We started feeding her formula around noon yesterday and around 5 she started acting the same as she was Tuesday. Uncomfortable and super fussy.  We are definitely going to be in the hospital tonight. I sure hope we get it figured out soon because I am ready for Addie to feel better and for us to get home. My mom is coming today to stay with Ellie so Scott and I can both be here with Addie. Prayers for an answer!

Wednesday, November 7, 2012

Back so soon?

We were admitted to Children's yesterday, and will most likely be here tonight.  Addie hasn't been feeling well since Monday and yesterday she seemed worse. She is uncomfortable, breathing funny at times and wakes up screaming. She was also really sleepy yesterday. She was either crying or asleep most the day yesterday. They have ruled out the big stuff, thank goodness. Her ECHO, EKG, and X-ray were all fine. There were a couple indicators on her labs that she might have infection somewhere, but these might be elevated because she isn't that far out from surgery so she could have some inflammation still from that. They did a blood culture that will give more accurate results. We should know preliminary information from that in 24 hours. I am so thankful that it isn't anything big, but I also wonder what is going on. They think she might have some bad reflux which could be why she is grunting, back arching, generally uncomfortable. She is already on a big dose of Prevacid so I am confused why she would just now be showing these signs.

This is so hard. I always fly into freak out mode when anything is wrong with Addie. I have read way too much, I know too much. It is exhausting. I spent the night at home with Ellie last night while Scott stayed here. On the drive home, I couldn't help but think about all the bad stuff that could be going on. It actually makes my heart hurt. Like, physically hurt. I also feel like it is my fault that she is having to go through this. Be admitted to the hospital for stuff that is so common for kids without bad hearts.  Every doctor that we saw before Addie's birth always made it a point to tell Scott and I that this wasn't our fault. It was nothing I ate or didn't eat. This stuff happens sporadically. But, I did do this to her. I can't help but think that.We decided to have a baby, and this is what happened. Some part of it is my fault, and I hate that with every ounce of my being. This time, we got lucky and it isn't anything big (we hope). I pray that isn't ever anything big. There is a potential though, and I have a huge problem with that. 

Saturday, November 3, 2012

Surgery follow-up

Addie had her surgery follow up yesterday. She checked out perfectly! She had an X-ray and labs and both looked great.  Her hemoglobin was 10.1 when we left the hospital so they put her on iron, and it is now 12. Heart kids need to be higher around 15 so we are working on that. They also made her Lasix  (a diuretic) once a day because her X-ray looked so good.  They discontinued her amiodarone (scary medicine with some scary side effects for her SVT) when we were in the hospital because she hasn't been pre-excited on any EKGs since June or her last holter. This is big!!! We are hoping Addie is part of the 1/3 of kids (normal, non-heart kids have this too) that just grow out of SVT. 

I am still amazed that we are home. Addie still seems uncomfortable at times, although I am not sure if it is from teething or her heart surgery. I think she is getting about 4 teeth right now. One of our favorite nurse practitioners, Kim, jokes that teething is worse than heart surgery. She might be right.  I still cringe at Addie's incision, although I know with time her scar will become almost invisible. They took all her steri-strips off and took out 2 stitches she had left. One from a drain tube and the other from chest closure. She isn't completely back to normal, but we see long glimpses of the happy, laughing baby we had over a week ago. She still seems a little tired, stiff and uncomfortable at times. To be expected though. She had surgery only 9 days ago. 

Scott and I feel so much more "free" after this surgery. We are taking our first out of town trip since Addie was born to Spearman for Christmas in less than 50 days ( It might be 48....I haven't counted or anything), and we are so very excited. It has been a long 6 months and we are so ready to get out of town.  Poor Addie has only been out of Dallas county twice, and that was only to Rockwall. We feel beyond blessed that surgery and recovery have gone so well so far!!  

Thursday, November 1, 2012

Happy Halloween!!

Happy Halloween from the cutest little bumble bee and sweetest little cupcake!