Down in the valley…
Our story has turned and its been a hard few days. We were having such a great day when we last shared, and thought things were getting better. We thought that we’d get to hold our little girl every day until she was well enough to come home.
Then they put the art line back in the next day because breathing has become a challenge again and platelets are low. Which means we can’t hold her every night (at least for now), which is hard.
Then even harder… little Aurora had her MRI, and without getting into too much detail the news was “devastating” as the doctor put it. Throughout development the virus significantly impacted her brain in irreversible ways with some clear impacts on her future abilities.
To be honest, he future feels so unknown right now. With the medical findings they shared, our hearts feel broken and we are at a loss for words. We are grieving for her, for the loss of many specific normal functions in her future…. we desire more for her. There also are still so many unknowns day to day as she fights new challenges.
The reality that we are living in a broken world, where evil still exists is hitting hard right now and just makes us really angry and sad. I know Gods word says he won’t give us more than we can handle and that he works all bad and evil things out for good, but it’s hard to see it right now.
Our family is grateful for prayers….as we need Gods strength, we need his peace, his wisdom. We pray for the doctors and the nurses and pray for Rory. For her suffering, for her sweet strong heart, for her to feel our presence when we are with her and find peace and joy in that. I pray that our presence of being with her each evening makes a difference in her health.
It often feels there to isn’t much we can do, but we still look forward to seeing her every day, we stand by her side and rub her, and hold her tiny hand or foot around all the ivy's and ports, we sing to her, and pray for her. She’s still so strong, and we just pray she knows we are with her and for her through it all!
Our faith is challenged but not lost, we know we will survive this, as much as it hurts we know (in our minds more than feeling it In some moments) that there is good in the future ahead, it’s just really painful right now after months of praying and hoping, we wonder …when will the suffering and hardship be replace with joy, peace, and hope…
2 Corinthians 4 is a passage I am trying to cling to right now... telling us we are knocked down but not destroyed. To fix our gaze on the unseen. As the present troubles feel so heavy, but we know we must and we are trying.
One thing we do know is how thankful we are for Gods community. The support we have felt from family and friends sending meals and staying at our house late while Jed sleeps so we can visit Rory has been incredible. We are so grateful for the body of Christ and that though we suffer and we carry a heavy burden we are not doing it alone. Gods people and body is good and we are grateful for that.
Thank you for your love and encouragement and prayers as we continue to journey along this hard road.
2 Corinthians 4:1-18 NLT
“Therefore, since God in his mercy has given us this new way, we never give up. We reject all shameful deeds and underhanded methods. We don’t try to trick anyone or distort the word of God. We tell the truth before God, and all who are honest know this. If the Good News we preach is hidden behind a veil, it is hidden only from people who are perishing. Satan, who is the god of this world, has blinded the minds of those who don’t believe. They are unable to see the glorious light of the Good News. They don’t understand this message about the glory of Christ, who is the exact likeness of God. You see, we don’t go around preaching about ourselves. We preach that Jesus Christ is Lord, and we ourselves are your servants for Jesus’ sake. For God, who said, “Let there be light in the darkness,” has made this light shine in our hearts so we could know the glory of God that is seen in the face of Jesus Christ. We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies. Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. So we live in the face of death, but this has resulted in eternal life for you. But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.” We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”
Our updates may be a little slow-as words and energy towards updating has been hard as we focus in on the now and meeting our girl where she’s at with her daily changing needs and situation…so thanks for giving us space as you pray for and with us..for our sweet Rory Rose!
The best surprise …
Today we got to hold Rory…each day from now on we’ll get to hold her too!
Praise God, for another answered prayer-the ability to hold and snuggle our little girl.
We thought it’d be weeks before this happened. We were told she still needed her arterial line , (which is a small catheter inserted into an artery….and b/c it runs through an artery holding a little one is too risk until it’s out) Well today when we arrived for our visit, one of our favorite nurses Kim was very excited and almost giddy as she told us the good news….that we’d get to hold Rory!
Rory was an angel and just fed and slept the entire time both mom and dad held her for! I think she felt at home and hopefully felt our presence and our love. Praise God for this blessing! our hearts are full and we are so grateful! Thank you for all of you who have been praying with us, specifically for this!
Continued prayers: time is still tbd but we are told tomorrow (today as I write this..Tuesday 7/21) Rory will have her MRI! The MRI won’t change any of her current treatments but may be a big reading into her future capabilities based on her brain, what they find developmental and with her head, and it’s ability to grow. We specifically are praying the soft spot on her head is there and that her head hasn’t closed but still has opportunity to move and form and grow.
Prayers for Rory’s head , for her brain and for future opportunities to grow and develop.
Lastly continue to pray for the fluid, her poor little belly looks bigger every time we see her from the fluid. And until this fluid goes and stays away she likely won’t be getting off the CPAP (her headgear)
Praise God for his loving kindness and goodness to us!
5 days strong
Rory has been with us for 5 days now!
Having a little one in the NICU during this season we are all living in with COVID has proven to be tough… but we are hopefully starting to get our rhythm.
Even while hospitalized recovering from our c-section we were limited on seeing her. It was hard and lonely in our hospital room, surrounded by baby sounds and cries but not being with our baby.
Moms recovering well overall so by day 3 we came home (reunited with our son) and now get to visit Rory once a day for a 4 hr period that we schedule in advance to not overlap with other NICU parents, being cautious with COVID. We’ve been scheduling the late/evening visits to still be with our son Jedidiah during the day. It’s hard not seeing her all day, but those few hours at night, even though we can’t hold her and she mostly sleeps, is really special. We rub on her, sing to her and read to her!
There also is a night nurse we really like, we’ll get to see many evenings named Kim. Her husband actually worked with Jessica with the CFAPB. What a blessing from God for an instant connection with someone caring for our girl, to create familiarity and trust. God is kind in the details.
Rorys progress: Rory keeps hanging in there, her platelets were higher today which is a praise! Though the fluid seems to slowly be building again…making it harder on her lungs and all her organs.
Prayers for the fluids to stop growing and start to decrease on its own. They will drain her asides again if they need to but the hope is to wait for the asides to handle/disappear on its own. As if they keep draining it, it likely will just keep coming back.
She is eating well (moms milk) overall from her feeding tube. She doesn’t always absorb it all but overall has been eating/absorbing. They haven’t been able to see her bladder /and one of her kidneys past all the fluid in their exam-but she is having bowel movements which we take as a positive sign for healthy functioning.
We still await to schedule the brain MRI and likely will need another chest exam this week. As we anticipate the brain MRI we pray for positive outcomes, that her brain development and function is normal and that her head is in a place where it hasn’t all fused together but her head can keep growing in space and size as she develops.
One BIG praise - the eye doctor examined Rory today-and praise God she can see! He will check her again at 3 months but for now we celebrate the gift of sight and that blindness (at least at this point) likely will not be one of Rorys challenges, praise God! An answered prayer for Rorys vision.
We continue to pray over her entire body system, that everything will work as it’s supposed to, that’ll she’ll continue to heal and fight off this virus. That her platelets will remain high/ good. That her lungs will improve to work on their own so she can get off the CPAP. That she will remain strong, and feel all the love and prayers, to not feel alone through any of this!
Thank you for all the love and encouragement and for continuing to pray for her with us!
“Rejoice in our confident hope. Be patient in trouble, and keep on praying.”
Romans 12:12
Our little girl is here!
July 15, 2020 Rory Rose was born! Beating so many of the odds.
To be honest, it’s been a hard experience and journey….but we are so grateful for where we are and we continue to hope and pray.
Mom went in for a c-section on July 15th, and as Rory was born at 37 weeks old - there was a team of doctors in the room ready and waiting, anticipating her birth, knowing her situation and risk and ready to give her all the care they thought she may need. Rory was born with a very large belly - full of fluid. The doctors whisked her away to start working on the fluid in her belly to ensure she could breathe.
Rory is currently in the NICU as the team cares for her and are running many tests to help determine all of her health status and needs.
So far she has had her belly drained once, the fluid is coming back, but we are hoping it will continue to subside on it’s own, eventually giving space for her lungs to do their job on their own. She was born weighing 5 lb 6 oz and dropped to 4lb 4 oz once the excess fluid was drained.
She has had platelets given to her 3 times (for low platelets) and hoping they will stabilize .
She is on a CPAP - but at room air, its mostly the pressure she needs because her lungs are having a hard time with all the fluid she has dealt with for so long.
Rory is also on an antiviral drug to try and treat her for the CMV infection. This drug will be given to her for 6 weeks with hopes of improving her overall health outcomes for her brain function and growth, and her ability to hear and see.
We are awaiting many more test and visits from specialist, such as a kidney ultrasound, a brain MRI and hearing and sight test.
It’s been a different and hard experience, especially living in the days of COVID-19. Parent visits are limited to once for 4 hours a day, in order to not have too many parents in the NICU at one time, and must be scheduled ahead of time.
It’s going to be a long road, but we continue to hope and pray for healing over our little Aurora Rose!
We know we serve a big God and we aren’t giving up hope!
-mom & dad -
