It has been 10 days since Poppy was listed for heart transplant. These last 10 days have been full of anticipation, worry, relief, disappointment, hope, sorrow, gladness- all of it. Watching your sweet child lying there, all dusky and gray, doing her very best to rest, while knowing her little half heart is constantly literally running a marathon in order to survive. All I want to do is scoop her up in my arms and feel her sweet fuzz hair tickle my neck, hold her tight and never let go. But knowing all of that is not yet possible because of how sick my darling girl is. I have to constantly keep reminding myself that some day…some day my sweet baby will feel good…some day.
Since Mother’s Day, Poppy has been super sensitive. Sensitive to touch and sound. Sometime my calming touch soothes her, other times it sends her heart rate soaring. Her resting heart rate has been hanging in the 170-185 bpm range, and has been as high as 208 for a diaper change. They have tried a number of things that have helped her in the past with tachycardia (high heart rate), but nothing seems to be working. She has a quiet sign on her door and her nurses are practicing ‘therapeutic neglect’ care, meaning instead of bugging her every 2 hours for care, if her numbers look ok and she’s resting, they leave her alone until she wakes on her own. This helps soo much. She has been able to sleep really well, thank God! Every day, the team discusses ways to try and bring her heart rate down- please pray something starts to make a difference. This heart has to last her until her new one comes.
Her feeds have been turned on and off multiple times. At one point (weeks ago prior to chest closure) she was up to 12ml/hr at 30calories. Heart babies burn calories fast so they usually fortify breastmilk to add calories or use high calorie formula so they can get the most calories with the least amount of volume. They don’t want a lot of volume because the gut is typically the last place the body sends blood, making digestion an added stress- also the reason why heart babies are on diuretics most of their lives, to aid with the added stress digestion has on their heart. The past 3 weeks, she’s been really struggling with her tummy and feeds. Even at 1ml an hour at 20 calories, her tummy gets distended and she vomits, prompting them to turn it off. The conclusion for the feeing intolerance is basically her heart failure. They have checked her tummy through a dye study, and everything looks normal-such a relief-praise God. But the fact that her heart failure is worsening is tough to hear. 😦 There are huge benefits to having even just 1ml/hr trickling through her intestines, so every day there is a discussion about her feeds. Yesterday they started her at 1ml/hr in addition to her iv nutrition, and she seems to be doing well so far. After all this explanation, we just ask for specific prayer that Poppy’s heart could tolerate even just a little trickle, so her intestines can continue to function. She got weighed yesterday as well- she is 9.9lbs and 22 inches long- she is in the 5th percentile for her age! Hallelujah! Our girl is growing, despite her tummy troubles and worsening heart failure.
We know Poppy’s heart will come when it is time-in God’s perfect time. The wait is hard-mostly hard because of her worsening heart failure. The heart she has now has to last her until her new heart comes. I just want her to feel good, or at least for her heart to be able to rest a little better while she waits. While her heart rate is high even as she is fast asleep, she looks so peaceful 🙂 So thankful for that 🙂 She is soo sweet!!
We’ve seen God’s presence continually revealed, reminding us that He is here-that we are not alone. His provision in our lives is so apparent and awesome in many ways. The day after Poppy was listed for transplant, God provided us with an apartment nearby-praise Jesus! That was clearly a tremendous relief and also a wonderous sign of hope. It not only allows us to be able to function as a family (Crosby is LOVING it!!), but serves as a sign of hope for us. As God guides, God provides…we have hope that Poppy’s heart will come, and God has provided a place for us to stay, as we will need to be here for a year post transplant. God continues to provide interactions with others as encouragement in Him and feeling His overwhelming presence in this place. Praise God!