Lord, I know you are hearing a multitude of voices for our little girl, and I thank you for being an interactive God that hears and reacts to our prayers! Hear me now as I cry out for my daughter. You know better than any the inner workings of her body because you are the one that knit her together. I first want to thank you for being at the beginning with her and waiting for us at the end. We have peace in the end result of all this, but I have to confess that the middle part stinks. I hate watching my daughter lying on a hospital bed, spread out b/c she is sedated, cold b/c she has poor oxygen saturation, and eyes gooped up b/c she is paralyzed and can't make her own tears to keep her eyes moist. I hate watching a nurse give her more sedation on top of her continual drips b/c her blood pressure has gone up for some reason. I hate holding her hand and her not being able to squeeze it back. And I hate not seeing joy in her eyes and a smile on her face. I hate it. And yet I somehow KNOW, just like I've KNOWN everything else about this pregnancy and last few months, that this will turn out okay. Thank you for speaking so clearly to me and getting me to a place where I can hear you so clearly as well! Just today, as I suffered through my worry, doubt, and anxiety, you reminded me of the truths you've spoken over her life and the promises you've given us regarding Arden. Thank you! I needed that today. I'm so tired. I feel like I need the encouragement from those around us and following our journey... and yet sometimes I'm grateful for an empty waiting room - so thanks for being here with us. You just reminded me of Romans 4:20-21 which I happen to love in the Message version: "He [Abraham] didn't tiptoe around God's promise asking cautiously skeptical questions. He plunged into the promise and came up strong, ready for God, sure that God would make good on what he had said." Thank you! I just want to publicly declare that I am not going to waiver in my faith/belief or ask cautiously skeptical questions - I have already jumped in and I am ready for You! Ready for you to make good on the promises you've spoken over her life. So as Arden rests tonight, inhabit her body and make it ready for whatever it is you have for her tomorrow. I continually pray for healing over her heart and lungs, and wait in your timing. I shout praises to you and send this out as an accolade of your faithfulness. We love you and are trusting you with our pain over this whole situation. In Jesus' name. Let it be so!!!
Please join me in praying over Arden for healing. She usually does not recover very fast from surgery, and the doctors are barely giving her 24 hours before the next. In today's cath they really only found good numbers associated with her heart pressures. Her Drs say her lungs are sick and in a healthy child, the lungs would be able to recover with a little time, but in Arden, it is more tricky. As Renee posted and Melissa emailed and Mom texted, it is a vicious circle of the lungs not being healthy b/c of poor blood flow and there is poor blood flow b/c her O2 sats are down and her O2 sats are down b/c her lungs are not healthy. So during tomorrow's open heart, Dr. Hanley will be adding a gortex shunt from her aorta to her pulmonary artery to increase the blood flow to the lungs. This will initially improve her O2 sats, but adding flow to sick lungs will actually increase the lungs recovery time. However this is the only step we have from here. Best case, recovery could be a few weeks. Worst case, a few months. Dr said we weren't looking at a heart transplant yet; we will have to see how Arden reacts to the surgery tomorrow before we know if that is in our future. She is continuing to lose her PIVs and only has one access now. I'm sure they'll put in more before surgery tomorrow, so pray for her veins to be open and primed for the needed PIVs or a possible PICC. So far we've only had problem with her O2 sats, we are praying we continue to not have problems with her heart rate or her blood pressure. Today she massively impressed the doctors with how well she did in the cath considering all her problems before (she actually came out of the cath with higher O2 sats then she did going in!), so we are praying the same over tomorrows planned surgery and her subsequent recovery.
As for Elliot: He had an appointment with the Child Life Specialist today and did great. She sat down with some medical dolls and equipment to roll play with Elliot about what was happening with Arden and he told her that his sister had surgery on her heart and placed the sensors in the right place, the O2 probe in the right place, some gauze and tape over her chest where her incision is, and a med line in her foot and hand. I was amazed as how much he knew with just the few times he's been into see her. He then proceeded to give LOTS of medicine through syringes through her mouth like we do at RMH. He's so smart and I was so blessed to watch him care for this doll. He tried a few times to drop the baby on purpose but we let him know he had to be gentle with her just like sister, so he picked her up (football style) and started to walk away. When I asked where he was going he said he was taking her home so she didn't have to be here anymore. I followed him a bit to realize he really wanted to walk down to the car and leave with the doll. He's just so sweet! The rest of the day Yaya Delia played with Elliot, Yaya Susan has him over night, and Yaya Shauna is taking him for the next few days. Thank you God for the Yayas!
As for me, I am still rather sick to my stomach and not hungry. I did eat a bit more tonight though - thanks Williams/Davis family! I am now off to bed to try and rest up for the days ahead. Eric is already asleep for his drive out to Sonora tomorrow. Forgive me if I don't pick up the phone or return texts or emails or whatnot. I can only go through the story so many times. But KNOW that with each voice mail and email and text and fb post that I get, I am encouraged by your words and humbled by your love. Thank you for being part of our community and sharing this burden with us. We love EACH of you.
2 weeks and counting
2 months ago