Surgery Update 4

We were moved out of the surgical waiting room since it closes at 7pm.  We are now waiting in the CVICU waiting room for updates.  The CVICU nurse just informed us that they were finishing up and beginning to close her chest.  It will be awhile before we get to see her, but apparently she is doing well.  Thank you again for the continued prayers.

Surgery Update 3

Emma is in bypass and is doing well.  Now the reconstruction and repair begins.  Please be praying for Dr. Baird and his team as they skillfully and carefully work on my precious girl's heart.

Surgery Update 2

Emma is doing good.  They have all of her lines in and are beginning to make the incision.  We will have another update around 4:00.  Please continue to pray for our sweet girl.

Surgery update 1

Emma just went back for surgery!  The plan is to do the bidirectional Glenn and repair her tricuspid valve.  Prayers for a successful surgery and smooth recovery please.  God is good!  All the time!  God is good! 

In a valley: opening my heart

It is easy to thank God for blessings. It is easy to praise him during our mountain top times.  But what about during the storms of life, the valleys, the hard times? Is it easy then? 

We have been trudging through the valleys for awhile now...I see the mountain top, but the climb is hard and filled with so many obstacles. I'm going to be perfectly honest, I am exhausted. I feel mentally, emotionally, and physically drained.  .We have been in the depths of hospital life since December 8. I have watched my bubbly, sassy, busy little girl become extremely exhausted, angry, and anxious.  Does she have her moments of happiness, yes; however, she has many more moments of unhappiness.  This absolutely tears my heart into a million pieces. I know we are doing what's best for her overall health; however, the process of getting there is extremely difficult.  

I yearn for normal...our crazy not even close to normal but our normal none the less (I way overused normal in that sentence huh?). 

I long to get Emma up early for all her therapies...giving her breakfast, getting her dressed, administering all her meds, and awaiting her busy day full of therapies, school, development strengthening activities.   I ache to hear her "singing" and "talking" to her kitty cat as she is going to bed, watching her scoot across the floor to get what she wants, share her food with Max, wheel herself to her best friend's house, and share smiles and laughs more than screams and tears.

I'm guess I'm pouring my heart out not for pity or sympathy, but to show all aspects of this journey to our loyal blog followers.  I want you to see that we have our moments...our low moments when it is hard to feel positive.  However, through it all, I serve a mighty God who is faithful...even when times are hard.  I serve a God who doesn't promise that times won't be hard, but does renew my strength when I feel the lowest.  

So, I encourage all Em's loyal blog followers to embrace your normal and don't take the little things for granted.  Take your kiddos out and enjoy the beautiful weather, read them one more story, love their inquisitive nature, spend quality time with your spouse, and don't forget to thank God for the blessings...even during the storms.   

Emma update:

We are still in a holding pattern for Emma's next surgery, but until then they are giving her a "big gun" antibiotic to try to knock out the infection.  We are consulting with a lot of specialists to try to determine the cause of the ascites and infection.  Please pray for the infection to cease, Emma's pain to subside, and a safe plan to get her to surgery.  

Thank you for the continued prayers as we climb this mountain.  God is Good!  All the time! God is good!

Pre-op Update

Surgery is now off.  Fluid from abdomen came back with potential infection :(.  Don't want to risk anything until we know more.   We will update everyone as we know more.  Information is just now coming our way so we are trying to process everything.  Please pray that they can figure this infection out soon.  

Cath Update 3

Emma is out of the cath procedure.  It went very well.  She behaved herself during the procedures that went on while she was in the cath lab.  She had the old abdominal ascites drain pulled and a new one placed.  They were going to attempt to do a dual lumen picc placement but opted to not do that after talking with all the teams.  After placing the abdominal drain in, they proceeded to the cath.  Her cath results were good.  Everything, number wise, looked pretty good.  The only thing they did was coil collaterals. This is a HUGE blessing!  Currently she is in recovery where they are just making sure they don't need to do anything to her prior to going back up to the floor for the night.  Her O2 sats are a little low and heart rate a little higher which is to be expected due to her coiling of collaterals and low hemoglobin.  So, as of right now, we are still on for the Glenn procedure tomorrow morning.  We appreciate all the thoughts and prayers!  Prayers for no fevers, low pain, and an uneventful night full of rest.  We will give a more I depth update this evening. God is good, all the time.  And all the time, God is good!