Life at 24 Weeks

Pearl at 24 WeeksI’ll start this post by saying that Pearl is doing phenomenal! She will be 24 weeks old right about the time I post this and her 6-month birthday is right around the corner! Her lungs sound as though they have completely cleared up and at this point, it seems that her medication has her seizures very much under control. While we were in the hospital over Christmas, they did another EEG and found that she was having several hundred seizures a day though she doesn’t always manifest them physically. According to her therapist, that is likely attributed to her low muscle tone. Either way, the doctors revisited her medication after the EEG and that seems to be yielding wonderful results. Now that her lungs have cleared up and her seizures are under control, she is sleeping much more peacefully. She’s also started smiling a good bit more. And by smiling, I mean smiling that can’t be mistaken for random muscle spasms. She seems to notice more when we engage her and she herself also seems more engaged. Obviously, not to the point of a healthy 24-week-old, but she is doing great.

Right now, she is scheduled to have g-tube surgery on January 23rd, and if all of that goes according to plan, her quality of life should go through the roof. She’s had this tube down her throat her whole life. She will also have a Nissen procedure to help with her reflux. As of right now, fluid can easily get into her lungs but the Nissen should reduce those risks. She really needs to stay healthy and cold free until her surgery date. If she’s not at 100%, then they will not perform the surgery for obvious reasons. Also, we are still waiting on the final word from anesthesiology as to whether they believe that she can tolerate coming off a ventilator after the procedure. The surgeon doesn’t foresee it being an issue, but he said he’s never had a patient with HPE, either. We’ll see. This surgeon seems to be one of the best in town at these procedures, and we are extremely grateful for that, but please join us in praying for Pearl in these matters.

As for everything else, there are many changes on the horizon. We really need to make a few changes in terms of some of Pearl’s care providers, and that feels like a daunting task. I won’t go into details here, but there are a couple of things that we’ve hoped would get better but haven’t. We’ve tried to work with what we’ve been given, and tried to just be grateful for what we have, but at the end of the day, she needs to be treated with dignity and honor as an image bearer of the Creator of all things. That has nothing to do with HPE… that has to do with being human. It’s so tough. Ruth and I both are extremely non-confrontational but we have been charged with caring for all 3 of these kids and if we see things that can be improved upon, we need to address those issues.

I’ve never had a problem with lucidity here, so I’ll go ahead and say that there are times I want to pull someone aside and say, “Hey, you do realize that you’re in Pearl’s life because life isn’t necessarily going well for her, don’t you? You can’t just go through the motions. You have to be vigilant, and if you can’t be that, please say so. What you do matters…a lot. This is my daughter, not an invoice for insurance.” Man, I know that sounds super entitled, but it’s where I am. Please pray for clarity in these decisions. Pray for cool heads on our part. There are times when we walk away from an encounter or a phone call, and want to scream. I don’t feel as though we are moving hastily, but the time has come to move on a few things. This part is stretching us, for sure.

We are also probably going to try to sell our home this spring. We’ve got to move out from 700 square feet. We really can’t get out all that much so we need to have a place that we can all be at one time, without feeling as though we are smothering each other. The kids need a yard that they can use. If we aren’t able to take them to the park or on walks like we used to, then we need to have a place where they can just run and be kids. Pearl is also outgrowing her living room apartment space and will likely need a crib soon. We’ve got no place to put a crib! This, like just about everything else over the last year, is going to take a miracle. We need to find a realtor who understands that selling our house will probably take twice as much work for about half as much money as they are used to. It’s not a million dollar property, and nor is it really “stage-able”, meaning there will probably be a suction machine and an IV stand with a feeding pump in the living room when they show it to prospective buyers. We need a realtor who has the time, energy, and will to carry most of the weight, and we need a buyer who is not put off by walking into a living room that sort of feels like a hospital room. We also need to find a new home (hopefully still in East Nashville) that fits us and is in our price range, and a mortgage broker who can maybe pull out a decent mortgage in spite of my not working so much of last year. So you see… we’re in miracle territory on this too, but that’s okay. I feel like we live in that territory most of the time and we aren’t intimidated by that. It’s not up to us to be movers and shakers who make it all happen. It’s up to us to do our best, and to be present, abiding in Christ, trusting him as he works all things.

So yeah, there’s a lot on our plate right now. Pearl’s doing really well, as are Brennan and Abbey, and they didn’t see anything weird about eating Subway in the empty hospital cafeteria on Christmas day. They don’t call her Pearl anymore, either. Abbey started calling her Sweetie a couple of months ago, and that has morphed into just calling her “Sweets!” I feel like they’ve all 3 really started bonding well and looking out for each other. One tremendous upside to our busyness with Pearl is that Abbey and Brennan are really locked in together. Since they are so dependent on each other for companionship and playtime, they are finding all sorts of creative ways to get along, compromise, and really play well together. As a father, it’s beautiful to watch. What father doesn’t hope that his kids aren’t at each other’s throats but rather to see them interact as best friends? What a privilege and gift!

We are constantly in the midst of difficulty and beauty, frustration and wonderment, hyper engagement and loneliness. I never thought I’d say that, but this is lonely. It’s harder to relate to our peers than it has ever been, and if you had told me prenatally that it would feel this way, I wouldn’t have believed you. I miss balance. I miss that constant broken awareness of God’s presence that we felt early on. I feel like most days we are drowning in logistics, always running a day late and a dollar short. We all need a fresh wind and renewed perspective. It’s within that proper perspective of all God has done and continues to do that we find hope, gratitude, peace, and patience to carry on. Pray that that will come soon. I always say this, I know, but thank you for praying. Seriously. Thank you that you continue to read these posts that are well beyond the length of quickly digestible. The fact that I should be one of the most grateful people on the face of the planet is not lost on me, but what good is this Church if we can’t be transparent and honest about our struggles.

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38 thoughts on “Life at 24 Weeks

  1. Continueing to pray for your family. I know your strength comes from the Lord, but still marvel at it. So glad to know sweet Pearl is doing better. May God continue to bless you.

  2. Thank you for allowing me into a very personal journey for you all & for Pearl! I love each & every tweeted photo. She is so alert, her eyes gleem with love & trust, & it fills my heart, & brings tears to my eyes. You have so much on your plate, I will hold you in my prayers. God bless!

  3. I am so happy to hear that little Pearl is doing well, she is such a beautiful baby and you ate blessed to have her and your other children as well. God bless and keep you in his grace. Much Love!
    Brandy

    • Thank you, Brandy! It’s been a long time… Hope you are well.
      I do feel blessed with my sweet family, a loving & supportive community, and even old friends who care enough to read about my family and pray for us. Thank you!

  4. I have been reading along (I don’t even remember how I found your family’s story, but it was from a friend of a friend rabbit trail before Pearl was born, not from a national news story!) but have never commented – but I may have a potential realtor for you. Please feel free to email me and I can give you more details!

  5. What an honest and beautiful post. Pearl is gorgeous as ever and your family give me such hope for the will and spirit of people. You are all in my prayers and have been since I first read about you. I will be praying for gods guidance in your upcoming plans and I do hope it works out easily and smoothly for you in all aspects.
    I wish there was more I could do but my prayers are here and always will be.
    God bless.
    x

  6. Never forget when we know of a struggle the Body of Christ will raise up in prayer against that struggle. Pearl is the first miracle and you and your family should know that you are the next miracle. How many people in this world could do what you and your family do if it were not for the GRACE of God living within each of you.
    You are never alone, even when it feels like it, and yes I know that you folks already know that. God is there first, then the prayers of the saints are surrounding each of you. Please just keep holding on a greater miracle is coming, I can just feel God at work in it.
    I must say that I have never seen hair as red as Pearl’s, such a beautiful red. God’s ability to create someone as beautiful as your little girl, and what a little fighter never giving up, and you and your family you all are a real miracle for the rest of us to see. God is teaching us through all of you to never give up, even when you or we may feel like the bottom has caved in, God is teaching all of us who pray for you to hang on too, miracles are happening, because of your miracles.
    In Christ, Louise

  7. I feel as if I am the one who has been prayed for after reading your posts. I can’t explain it, but it feels like such a sweet sermon you preach. I lost a daughter to stillbirth, and I often think the Lord took her because I was not equipped to deal with the problems she would have had. I wasn’t ready at that time. It’s apparent that your family is ready, and God has equipped you to be exactly what Pearl needs, when she needs it. I pray that God will meet all your needs for housing, and that He will continue to allow your family to touch the lives of others around the world. Thank you for sharing your beautiful baby girl and her story with us all.

    • Sandra,
      My heart aches for you & the loss you feel, for the moments you didn’t have with your daughter. God’s ways are so hard to understand. I pray that you look forward to a sweet reunion one day, when all is made is right, and we have no more reason for tears.
      I have honestly never felt “ready” for all that has come with caring for Pearl. I can’t count how many times I’ve been in tears because I wasn’t sure how I would face what seemed to be happening. But not going on isn’t an option – I can’t just make time stand still. So we take each new day as it is set before us. God gives us the strength for each new step, literally just one at a time. Praise God, because I couldn’t have mustered it on my own!

  8. Still praying for you—God will come through for you and your family. I know it’s hard, feeling that your prayers are bouncing off the ceiling, but He’ll do it at the absolutely perfect time. Hang in there!

  9. Pearl is so cute.Will continue to pray for full healing. The Lord healed me of epilepsy when I was 17yrs old. I am in my 50’s now and have never had any issues with that. I know His healing power and I know it’s for Pearl also. I pray you feel His love surround you and know He is for you. Love in Christ . Hugs

  10. It is a great privilege to find myself among your followers. Your transparency draws me/us into deeper relationship with the Father. In the thick of things I’m sure it is hard to know how you are being used by Him or how any of this is willing to your good or Pearl’s.

    I do know He knew He had servants sensitive to His Spirit, able to receive the grace He would extend. Granted you may not always feel like that but it is what the rest of us are able to see.

    The God who brought water out of a stone, who brought forth flowers in the desert, who spoke creation into existence, and whose plan for our salvation including dying and rising again, is your God! He does not change. We all would say we want a miracle in our lives but not many understand where we’d have to be first to witness that miracle.

    May the God of peace fill each of your hearts, grant you favor, strengthen your spirits, refresh your bodies, endow you with all grace to walk with Him and continue to bring glory to His name. For He is able. Amen and amen

  11. So grateful to read this post! Eric,you and Ruth and your family are in our prayers. Our Lord is doing crazy things in and through your family, things I’m sure we won’t see until the day He returns. Just thankful that Sweets was born to a family of believers who know she is a gift and unique in every way. Praising Him this morning anew for your witness!! Love you guys! Hope to pick and grin with you again soon…..

  12. I know you have a gatekeeper reading your messages, but I hope she will share with you that we would love to talk with you. My granddaughter is 3 months old and has schizencephaly. She has less problems than pearl, right now, but the future is unclear. Like you, we are Christians. My daughter Mel is only 21 going through this as a single mother and I know she would be blessed hearing from you. She doesn’t personally know anyone facing this type of struggle. I am sorry that you have had any negative feedback at all from people. People can be thoughtless and cruel. Mel has gone through a lot of the same struggles, especially prenatally, when the doctors recommended termination. Seaveyartist@yahoo.com. Hope to hear from you guys, but even if I don’t, we are praying for you and Pearl. Hang in there!

  13. Eric Brown! We certainly pray for you guys often, even though you don’t hear from us as often. Today we are celebrating 2 yrs since Asher underwent open heart surgery! Sometimes it feels like a dream (albeit a $200k dream), but we marvel at the Lord’s faithfulness through the journey. Again, we didn’t always see that way in the midst of the journey, but so much more looking back. I pray the same for you, Ruth, Brennan, & Abbey.

  14. So happy to receive an update on your precious Pearl, thank you! What a sweetie! Continuing to send up prayers for you all! God bless you!

  15. May our Father in heaven pour abundant blessing into your hearts and lives bringing healing, strength, peace, prosperity and every good gift out of His glorious riches. Remember that the power of life and death is in the tongue (Proverbs 18:22) and speak only life over your precious family, never claiming sickness or negative things but trusting God and praising Him that every challenge will bring victory! I continue to pray for you and praise God for all the miracles He is doing. 17 years ago I was told my unborn son did not have a brain. God healed him and although he has faced some challenges, today he is a fairly healthy young man. I believe that Pearl will have a great testimony as well when she is older and she will live long and declare the mighty works of the Lord!

  16. It is so wonderful to read that Pearl is doing so much better!! Happy 6th Month Birthday Pearl!!! *<:-) {my little party hat smiley face} I love her picture!! Those eyes of hers even smile. We know she is a fighter with that beautiful hair of hers! 🙂 I'm not just saying this but she really is a beautiful girl!! I love reading about her and about your family!

    Your honesty is well taken and appreciated! God knows that we aren't perfect! He knows we struggle in all ways, that we are going to have good days, bad days, smooth days rough days, easy days, why God? days, I understand you God days, etc.. God wants us to be honest, He wants us to communicate with him, He wants us to share our thoughts, feelings with others as He uses others to help us. You have helped us in our walk with God and with others. We can say Pearl has helped us through you too. Hopefully some of us, your followers have helped you through with our thoughts, words and prayers.

    Know our prayers are with you all!! We will be praying for the changes that need to be made with some of the care providers, the right realtor, the right house for you, the sale of your house, Pearl's health so the next surgery and procedures can be done, and that they go well! Prayers for you and your family, that you all stay healthy as well, that you feel a refreshing, wind to lift you up, friends to lift you up as well, and that you will see and experience God working soon in the areas that you need!

  17. Our God is a great big God and he has certainly kept you all close.
    I am sure that Pearl will be in her own way be showing Gods love and care.
    I am excited to think of your families future
    God blend

  18. I’m grateful for your honesty, Eric. Keep it coming. This helps me know how to better pray for you all. I’m astounded Pearl is almost 6 months old! You and Ruth have been so gracious to let us be a part of Pearl’s story, through all the ups and downs. I look forward to seeing how God works all of this together.

    P.S. I’ll be happy to help you all pack and move to your new house when the time comes.

  19. She is SO beautiful. Look at all that hair! Thanks for sharing with us Eric. Praying for all of it; siblings, doctors, you, Ruth. I am constantly amazed by your daughter and by your faith.

  20. I so wish ya’ll live closer to Indiana!! When I read about the care she is receiving from her nurses or home health care people… Whatever you want to call them… It makes me crazy!! I would love to be in a position to help a family like yours and to take care of such an amazing gift from God! Do they not realize that she shouldn’t even be here and by his miracle they are able to hold her and love on her??!!! My ultimate goal is to become a nurse in the NICU or Special Care nursery!! And if I lived by you, you wouldn’t have to deal with them at all!!

    I will send prayers about the house.. Please give huge hugs to all the babies and let them know how many people are praying for an easier road for all of you!

    Sincerely,
    Elizabeth Jones

  21. I wanted to take a moment and tell you how much I appreciated your transparency and willingness to lay it all in the table. I’ve followed your journey since almost the beginning so I’ve been amazed at how strong you all have been, and I’m sure you don’t always feel that way. But when you talked about knowing how blessed you are and still struggle with the fact that Gods answers haven’t exactly been what you asked for, that very often His answers to your prayers don’t resemble answers at all, that you feel loneliness, it emphasizes to me that it’s ok to wonder what the heck God is up to, it’s ok to tell Him you don’t like this path you are on, that its ok to ask (scream, yell, cry) why, and not “lose” your faith, trust, or confidence in God. Thank you for letting God use you & Pearl & your sweet posts to remind this 50 y/o woman with grown kids who lives in Ocala, Florida that has been certain that God is looking the other way right now & I’ve been forgotten that its one thing to feel that way. But my soul knows better. I pray you & your sweet family will know what a blessing you are. ❤

  22. I wish you lived closer to upstate NY its really beautiful here and would love to be ble to help with Pearl.. As the Garth Brooks song ” The River” I will sail my vessel to the River funs dry . Each day is a constant battle to stay between the shores but with God as myCaptain I will make it through it all “: I swear that “God ” tests us and the trials that we have day to day can seem daunting sometimes you need to step back and look at the big picture and not the focus so much on the daily tasks but see where you have gotten too .Pearl is beautiful and growing and doing things that no one has thought she could do . I have been watching her progress from the start and look how far you have come. Trust that God will provide you with what you need in very mysterious ways. I have seen that alot .. My husband had a kidney transplant on Good Friday and he has never had one set back. we faced alot and we have gotten through, sometimes it seems like a war but we seem to manage the small battles. I pray daily just for guidance and strength and. God bless you all and the strength and compassion that your family has.

  23. I so love your heart of gratitude in the midst of all your challenges. All this stretching of your faith is deeply strengthening your walk with our Creator & you guys are a powerful witness to the world around you. God IS doing amazing things through Pearl Sweets. REST your hearts in His unfailing love & peace. Overflowing blessings to you & all your precious family.

  24. God bless you all For being witnesses on what it means to walk with Christ, die unto yourself and reflect His presence in your protection of the three blessings he has given you. Viva Pearl Joy Brown and the love you radiate even in the moments where it might not feel like you are radiating love..but you are. Thank you for sharing with us. We will continue to pray.

  25. Hi, Browns! We’ve been praying for Pearl and following your story via Eric’s twitter. Just happened to find the blog today and it’s great to read the many ways Pearl is improving! Praying for wisdom and direction as you make decisions and have conversations. And praying for your house to sell. I’m not sure where you all are in the Nashville area, but we know a couple of great realtors there. My husband also does work in Christian music, so we have been praying for Ruth while you’re on the road as she, Brennan, Abbey, and Pearl “count sleeps” til Dad comes home. The video of the little girl who’s now 6 and reading was *amazing*! Praising God for His glory! And thanking Him for encouraging your family so specifically through that article & video! Can’t wait to see all He has for Pearl!

  26. I own a Real Estate company founded and based on Godly principals. Although, I live in Savannah Ga, I have networks of people around the US that share the same faith. Feel free to check out my website and contact me if you haven’t found somebody to help you yet and I would be blessed to see what I can do. 🙂 http://www.neighborhoodrlty.com Rebecca Holcombe

  27. I will be praying for Pearl’s surgery as well as you guys selling your home. I have every faith that it will work out better than you can imagine. through prayer we sold our E. Nash house last August and it was the most amazing thing ( it was not even on the market) because God was in control. It also sold for significantly more than what we had tried to sell it for the year prior so I am thankful God made us wait. The whole process ( while still stressful) was definitely a miracle and you guys deserve and will receive that same miracle. Really glad to hear how well pearl is doing and her siblings. Y’all are some GREAT parents and great people!

  28. As a nurse (even used to teach Peds), I continue to be amazed at what God has done in Pearl’s life and those whose lives she is touching. Understanding that God’s ways and thoughts are beyond ours has never seemed so apparent. I pray that you are renewed in strength and in hope as you journey forward. Thank you for allowing those of us who follow your blob to be the CHURCH we are called to be.

  29. I continue to pray for your family and check back often to see God continually moving in Pearl’s life. Thank you for sharing her life and your honest struggles with us all.

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