Poppy has been a little off the past week. Although she is technically ‘stable-ish,’ she has been more sleepy, greyish in color, tachycardic (higher heart rate), and has had poor profusion (blood flow to her body). When she opens her eyes, she just looks like she doesn’t feel good 😦 Poor baby- all she’s been doing for the past week is sleep, really only opening her eyes when she’s getting her hygiene, then right back to sleep. 😦 Brad came back from MT and the second he saw her he was sick to his stomach. He said, ‘that’s not how I left her; she looks so sick :(‘ Ugh, this breaks my heart just revisiting that moment 😦 She is fighting so hard. 😦 She’s so tired. 😦
Yesterday, a member of the transplant team joined us for rounds. Neither of us were really surprised by this given the visits with Dr. Permut we’ve had in the past and her current state. We’ve been told that this is really just to start getting them familiar with Poppy, should she go that route. Basically, the doctors are baffled as to why she is not recovering. They are constantly ruling out infection and trying everything they can think of to help her recover, and she’s still ‘not thriving’ as they call it. At this point, they aren’t even sure if she will ever be able to tolerate chest closure with her natural heart. Physically, there seems to be no problem closing her chest, as they had her closed for 20 minutes the last time they tried, but hemodynamically, she has struggled, prompting them to open her back up and try the wound vac for a more gradual closure. Since they have ruled all else out, the issue is more than likely her heart, probably more specifically, her tricuspid valve regurgitation. The plan for this week is to change out her wound vac dressing again today, check everything out while they are in there, and hope to attempt chest closure Friday-sort of one last try before developing a new recovery plan. In some way, it’s kind of a relief to have the doctors who specialize in chronic heart failure involved, but in a bigger way, it’s so humbling for your sweet innocent child to be in chronic heart failure at 7 weeks old. 😦
We know that she is resting in the Lord’s arms and oh soo loved and cared for. She is His child. Thanks to all who are praying for us. Even as we grieve, we surely feel His presence.
prayforpoppy 
We are still praying for Poppy. She is in my thought everyday, God has a plan for her and we have to believe in it. She is in good hands so believe in the doctors and what they can do.
Poppy and her family are always in my thoughts and prayers.
Ah, sweet Poppy, the Lord definitely has plans for you. So many people praying for you and trusting in The Lord to bring comfort to you and your Mommy and Daddy. Their strength and trust in Him is incredible and teaching all of us that are following your progress a lesson . I pray that you all(Grandma and Grandpa too) continue to feel his presence and love surrounding you and He puts you on the path to healing and coming home quickly.
I read your post this morning and then this song from Stephen Curtis Chapman was part of my devotion and I thought of you when I read it.
MIRACLE OF THE MOMENT by Stephen Curtis Chapman
There’s only one who knows
What’s really out there waiting
In all the moments yet to be
And all we need to know
Is He’s out there waiting
To Him the future is history
And He has given us a treasure called right now
And this is the only moment we can do anything about
And if it brings you tears
Then taste them as they fall
And let them soften your heart
And if it brings you laughter
Then throw your head back
And let it go, let it go
You Gotta let it go
Listen to your heartbeat
There’s a wonder in the here and now
It’s right there in front of you
And I don’t want you to miss out
The miracle of the moment.
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God…
Praying for healing, strength, courage, peace and comfort for little Poppy and your whole family!
Oh Christi, I grieve with you, this must be so difficult to see your sweet baby girl struggling so. You’re right, God is holding her now and has a plan. I am thankful more specialists are involved. This week I will dedicate more time in prayer…
A HUG
Poppy & Family,
Love and Prayers….
I am so sorry to hear everything that is going on with Poppy. She has the best family any little girl could ask for. 2 steps forward 3 steps back is a hard thing to go through while you watched a love one in the hospital. I think and pray about your whole family throughout the day. I haven’t been writing you a message so I feel guilty, I will get better at it, I realize how it can help take your mind off of things for a moment of your day. Its May and the slide into summer, I am sure Poppy is ready to blossom now!
Love LeAnn
Kamryn was placed on the transplant list at 7 weeks old. She was 9 weeks old when her precious new heart came. God has and will always be in control. The transplant Dr’s at Childrens are informative, incitful, but above all will take good care of her. Our prayers are with you and sweet Poppy.
Father God, I lift Poppy her mommy and daddy up to You. Lord, I thank You that they are all in Your arms together. Thank You for Your peace and comfort upon them. Christi and Brad there is not a day that goes by, that I don’t stop and pray for you. Everyday my heart goes out to you and Poppy. Sending love and hugs.
Hi Christi,
I am feeling badly that Poppy and all of you have had such an uphill battle. You have been a great mom, Brad a great dad, and Crosby a wonderful brother to this little girl. These are very large gifts to her–you are doing all you can. Sometime that is all we can do. Prayers for all of you.
Debby
We are constantly checking in and you are always in our thoughts and prayers. Stay strong! All our love
So many struggles, so little to say that can comfort, but know your family and friends agonize along side you, and rejoice with you in the small triumphs. We will continue to keep you in our thoughts and prayers and trust God asking Him to give you the strength, and fortitude to continue your vigil at Poppy’s bedside. May His healing touch be on her, may He hold you carefully and safely in the palm of His hand. Sending our love across the miles.
Please know that you are all in our thoughts and prayers.
I check in on Poppy every evening and pray for her always. She is such a precious child of God. My heart goes out to all of you and know that God has each of you wrapped in his arms.
Prayers for Poppy and family….thinking of all of you.
I’m the same way, as much as I didn’t want to think about Victoria getting a transplant, I was happy to have the transplant team following her. They are really good doctors. I think even a step about the other docs when it came to my little girl. I hope that they are guided to the correct decision soon so that she can start down the path she needs to be on. I know God with inspire you both as parents so that you can be a part of all the decision and feel comforted that they are correct.
Dear Lord,
We offer up our hearts and lives to you. We do not always understand why things in life happen as they do, but we pray for strength and endurance. Hold little Poppy in your loving arms. let her mom and dad feel your Holy presence through the love of all their friends and family who weep and walk this trial with them. We pray that your will be done, and by the power of your Holy Spirit give to us the faith we need at this time.
We ask this through Jesus Christ your son, who lives and reigns with the Father and the Holy Spirit, one God forever and ever AMEN.
In Christ
Deacon Warner Holm