There are simply no words to describe how it feels to be able to be a family…at home and together…soaking up all that being a family is…wow..it’s overwhelming. Thank you, Jesus for this wondrous opportunity. It’s already so easy to forget all our sweet girl has gone through in her five short months of life…it’s almost uncomprehendable, and yet we have pictures and videos to tell her story and forever remind us of her start…her battle..her miraculous start to life. It’s like, how could we be here…all the way here, and have almost forgotten the weight of what her life means and how sick she was and how amazing and blessed we are to have her here with us today.
Looking back at the picutres and videos of those days….those days when she was so sick..puts us back there..right back there. Wow, God you are amazing….never ever did I imagine my life would be this, but You are awesome and mighty and You have made my/our lives such a tremendous gift of blessings–it is wow…no words. I look at the pics and immediately I am back with her, at her bedside, the same anxious emotions I remember feeling and somehow, there is peace again, just like in the moment..Your divine peace that sweeps over me, only now, I have an idea of what happens, and the same tears from then and tears of joy from now collide, and I am a sold out mess. God You have brought us here, You have provided for us every step, and You have carried us through the darkest of days and Your Holy Spirit has helped to keep our focus on You and rest in You. Now, I get to look at her, the precious miracle that she is and just see God’s glory staring right at me. YOU are here. I remember waiting for one of Poppy’s procedures down in the play area with Crosby. It was springtime and the kiddos had been playing with the sidewalk chalk…’God is here.’ was written on the sidewalk….goosebumps, tears, overwhelming sense of Him there, with us…with all who are there with their sick child…there is hope..there is always hope in the Lord and praise Him, for He is EVERYWHERE. An overwhelming sense of peace and joy in the midst of the darkness, there He is.
You take such great care of us….You have blessed us with such a precious gift…this gift of life with Poppy and our family together. We know time here together is unpredictable….we know all is in Your hands, but we are so so thankful that You have allowed us to share this precious gift of time together. We pray we never forget just what this is…this tremendous blessing of time and gift of health that we so easily take for granted.
We have already begun to see our sweet girl grow and change, even since bringing her home just a short 6 weeks ago…miracles abound. Every time I feel frustration surround me as we seem to ‘fail’ as a family, trying to get it together enough to go out for a walk and forget something important, or just to do family mealtime, and have Crosby into everything that is not a toy..even just to get in the car to go to the park and have her vomit immediately, as soon as we pull away..I am brought back to God’s grace. It was His grace that got us here, and His grace that will continue to carry us, even through these seemingly meaningless daily trials. Surely He has seen us through much greater than these. He is always here- thank you Jesus!!!
Tomorrow, Poppy has an appointment with her OT. We get to try purée!! As you can imagine, I have been excited about this for the last 2 weeks!! This feeding thing is challenging. Earlier this week we tried the Haberman bottle, which was a suggestion by one of you all- thank you! Initially, she did really pretty well, but the last couple of days we’ve been attempting a wean on her hydromorphone and I watch my darling try- she tries! And ends up gagging a lot and occasionally vomits. If I gagged and wanted to vomit anytime anything was in my mouth, I probably wouldn’t want to eat either 😦 So I am still hopeful this Haberman bottle will be the ticket!! It’s really super slick!! I really do think she will do well with it once she’s in a better place with her sedation wean. I’m also super anxious to see what she’ll do with a purée that doesn’t taste like ‘multi vitamin’, as one blogger refers to the overwhelming odor and graininess of Elecare formula lol!!
On a side note, Seattle Children’s asked if they could follow Poppy on our journey as a family through the course of life with a baby born with HLHS. They asked us at our very first appointment here in Seattle, before Poppy was even born. We agreed with the hopes of helping other families in similar situations in some way. We were razzed by a few doctors and nurses, ‘oh look, here comes the poppy-ratzi!’ Lol. But it was neat to have such wonderful footage!! It should also be quite the keepsake, as they were able to capture her heart transplant among a few other procedures, not to mention our family life in the midst of it all.
Our hope is that many would get to see God at work, in His wondrous glory, through it all. Please pray with us that many would be encouraged to seek Him out and this feel His love and grace out of it-that ultimately He would get the glory!!!
It is airing on Sept. 8th (Poppy’s 6 month birthday!!) at 7pm on KOMO.