But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Thursday, October 4, 2012

Seth: surfactant deficiency mutation

Hi everyone,

It's taken several hours to process enough to be able to sit down and write this. We know many of you will pray and all of you care, so we want to let you know that Seth has a heterozygous [on one chromosome only, not both] genetic mutation (ABCA3) likely affecting his lungs' ability to properly manufacture surfactant. Surfactant is critical for breathing as it allows the lungs to continue inflating properly. How much of the lung disease is due to surfactant deficiency and how much is due to his prematurity and resulting need for machines and oxygen, we don't know, but it's likely that the genetic mutation is at least exacerbating his condition. An ABCA3 mutation on both chromosomes (homozygous; from mom and dad) is often fatal. However, given that Seth's mutation is only on one chromosome (heterozygous), we don't know where he falls in the spectrum of disease. Is he one of those who will do better and grow lung tissue fast enough to compensate for both the machine/oxygen damage and genetic mutation? Obviously he is producing SOME surfactant, or he would not have survived at all. (As one doc said a couple weeks ago, he would bet Seth did not have a surfactant deficiency mutation because he wasn't sick enough.) Or is he one of the babies who will ultimately lose the battle, despite all the support and treatment the hospital can give him?  We have no way of knowing. We do know Who wrote the book of Seth's life before one of his days came to be, though. (Psalm 139) That doesn't mean this isn't very difficult and sad, especially the thought of how long he could be in the NICU and how painful it will be if there comes a time when we turn off the machines and say goodbye.

Needless to say, I cried a fair amount during the meeting with the neonatologists, neonatal nurse practitioner, and nurses today. My crying can't help Seth, though, and could hurt him (and the other precious babes) because it wears me out! I need to be in "top form" to provide the nourishment and love he and his siblings need, as well as continue to mother Isaac here at home. We will be busier than ever now that we will have a child at Children's Medical Center, others at St. Paul's for a few more weeks, still others coming home soon (Lord willing), plus Isaac. So this is a plea for any additional volunteers, especially those who can commit longterm and those who have experience with nursing. Volunteers, including those who can help keep home from falling down around our ears, will enable us to be with Seth as he grows increasingly aware of his surroundings and needs increasing amounts of interaction with his parents, grandparents and environment and/or as he grows increasingly sick. We're in a wait and see period right now.

Seth still has a PDA and the pulmonary hypertension, but the blood flow through the PDA is the reverse of what they would expect given his pulmonary hypertension, so that's perplexing. He will undergo very extensive imaging tonight or tomorrow morning. They may decide to ligate the PDA despite how risky the surgery would be given his current poor lung condition. They may add another drug to the nitric oxide to ramp up treatment of the pulmonary hypertension. It's the tightrope walk again. We continue to pray for wisdom for the medical staff.

To sum up, in the specialist's words, Seth is very sick and there is a significant possibility that he could die. Not that we didn't already know that, but I guess the possibility is higher than I expected. I like what my mom says: "Either way, Seth wins. He gets to live here, loved and cared for, or he gets to go be with Jesus." (And we will join him one day!) My biggest goal is to make sure he is LOVED and cared for tenderly. He's been getting regular sedative medication, pain medication (although they've been able to wean that down a bit and he's been more alert and tolerating it well), plus "Sweet Ease" sugar solution on his tongue during needle sticks to trick his pain sensors - he loves it!

Thank you for praying. We've never appreciated it more.

To God be the Glory,
Carrie for Gavin, too

65 comments:

  1. Wow! Difficult news, but am confident with you of God's love for Seth, and His ability to heal , and give life for all Seth's ordained days. Many thoughts and prayers are with you all.

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    1. Sorry forgot my name..Debbie Williams Rumfelt.:)

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  2. Dear Gavin and Carrie,
    I haven't commented before, but I've been praying since (nearly) Day #1. We've been in WBT, SIL since 1980, and you dear folks are our brother and sister... we have mono-mono twin grand-daughters who lived in the NICU for weeks and weeks before coming home, so we know the daily journey and the ups and downs. Seth especially is in our prayers and in our hearts. I wish we were in Tx. and could help with the daily care. Be assured of our prayers. Betsy Barber

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  3. My heart is heavy with your news this evening. I'm sorry I don't live by you or would be willing to do whatever I could to help. I will just keep praying, seems the best that can be done at the moment. Please know your family will remain in my heart and prayers. Sending blessings and peace to you all....

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  4. My Heart Goes out to All of you, Especially you Carrie, this is very heavy news...Your statement about your goal to make sure he LOVED and cared for is just what I see you doing...The love that comes through, in the pictures of you and Seth always brings a smile and a tear just seeing the unspoken communication between the two of you..As a Mother of three one being adopted handicapped and non verbal, I know how strong the unspoken bond can be, Yes God has a Plan for Seth's life no matter how long or short it is... Praise God for that "Litter Fighter" Seth....Along with my continued prayers for Isaac, Gavin, You, and all the special little ones for each of their needs,, I will Pray that Seth rests in the arms of Our Loving Father,and in the loving arms of his Mom and Dad, and God's special Peace, Grace, Love and Strength, be with all of you...I will be praying and offering up my struggles for your Babies, family, and for God's will.... You Two are not alone.....

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    1. I will be praying for you all and little Seth. God knows what is right for Seth but it doesn't make it any easier to watch and wonder. I will pray for continued strength with Seth and your whole family.

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  5. Lawrence Nogee, M.D.
    Professor
    Neonatal-Perinatal Medicine
    Specialty:

    Neonatology
    Location(s):

    The Johns Hopkins Hospital
    CMSC 6-104
    600 N. Wolfe Street
    Baltimore, MD 21287
    Special Interests:

    Genetic surfactant dysfunction disorders
    Neonatal lung disease
    Phone: 410-614-3355

    Email: lnogee1@jhmi.edu

    Related Information:

    See Dr. Nogee's published research via PubMed.

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    1. Dr. Nogee is one of the researchers with whom the NICU Director consulted prior to our meeting yesterday. I have already read at least one article on PubMed re: his research. Thanks for the additional info!

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  6. Oh sweet friends, I am praying for you.
    Jen

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  7. This was so hard to read. I had to stop several times just to clear my eyes. I can only imagine what it took for you to write it. I believe in miracles and I will continue to pray for God's healing for Seth and I know he loves Seth and will do what is best for him. Either way, God will heal Seth. I will continue to pray for all of you during this journey. My heart goes out to each of you. Please remember to take care of yourselves, as you said Carrie, your children need you in top condition and I know it is so hard right now. I pray for your strenfth and comfort and thank God for your beautiful babies, all six of them, and your wonderful husband. May you have peace in your hearts and comfort as well.

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  8. This is my first time commenting, but I too have been following your family's journey with these babies since the beginning. The news tonight really saddened me. In the beginning, I was amazed at how well ALL the babies seemed to be doing. I have a baby that was in the NICU for 4 1/2 months, so I understand the roller coaster ride a little bit too; can't imagine going through it with 5! I pray for a miracle for Seth. They can and do happen a lot in the NICU. These babies have strength that I as an adult can't ever imagine having. I will keep your family in my prayers. I'll say a special one for Seth tonight.

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  9. My love and prayers for precious Seth and my dear friends.

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  10. Following your precious family from Florida-prayers for all babies, extra prayers for baby Seth, prayers for Issac, and prayers for mom and dad. We are on our knees for you, reading posts, you have built up a mighty army around you. Our God is Great, and we continue to ask for strength and peace for all of you. You are not standing alone.

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  11. Hi - I am praying Psalm 118:17 - that Seth will LIVE and not die and declare the works of the LOrd! Blessings to you all, Jemimah Wright

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    1. I love that prayer. :) Thank you! Carrie

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  12. I truly wish that I was close so that I could help with the practical aspects of this journey. I'm not a nurse but I can run a mean vacuumn cleaner, peel potatoes, and wash dishes. In the meantime, my thoughts and prayers continue with all of you, especially Seth.

    Blessings,

    Gail Boemker
    Waxhaw NC - in South Carolina this week for a prayer retreat.

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  13. We that are not close will do what we can through prayer - lifting you all up before the Lord, and asking Him for a miracle for Seth. God is GOOD, although that doesn't make this situation feel any better, but we know that you believe that and rely on God for your strength to deal with all that is happening. So we will pray even harder that God will give you all the strength you need, as well as the support you will need to care for your family during all the transitions. Feel our love across the miles, and know that God loves you and the babies more than you can ever comprehend. NKL

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  14. Sitting here crying with you. Love that little guy and know this is HARD NEWS. Know I am praying and wish so much I could be there to help (ok, its like my dream to come down and help....as this is my cup of tea)..... Sending hugs to all of you!

    Laurie

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  15. Oh dear friends. I am continuing to lift your whole family in prayer. May the God of peace fill you to overflowing with his sustaining love. I will echo J.Wright's prayer as well!

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  16. Praying for your family...God's peace, strength, and wisdom.

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  17. Carrie, I don't know if you get to read all these comments or not, but after your last post about Seth, I just had to let you know another person is praying for your family and sweet baby Seth. I am crying after reading it and am picturing his precious little body right now. Praying! Lots of love.

    ~Ruth Ann (Lachmann) Wassenaar (LML circa 1990)

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    1. I do read the comments at least half the time, and Gavin reads them all. Thanks so much Ruth Ann! I loved having your dad for a teacher and you were such a neat family (and pretty girl). :) Thank you so much for praying! I love knowing how wide the prayer network has become. Love, Carrie

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  18. We're praying for you, here in Ireland. God knows what is best, He has a plan!

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  19. My dear friend, this was not what I wanted to hear. But as others have said, He and the rest of his siblings are in God's hands. He is holding them and you tightly. He won't let go. I am crying with you. Judith

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  20. Your family will be in my constant prayers.!

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  21. I am praying for Seth frequently! I can't imagine facing that news, but like your mom's perspective. I'm praying God will HEAL him here on earth, that despite the abnormal chromosome, he will either beat or defy the odds and live an abundantly NORMAL life with NO lung issues, even when science says he should. ;) Jehovah Jireh and Jehovah Rapha!!! Every inch of precious little Seth was known before he was born, he was KNIT together in your womb. Have you ever knit? It's a learned skill and takes effort. It's not like cutting and sewing. Each loop entails work and with greater know-how, you can do fancy designs. God has done fancy designs with Seth and has a purpose for him. He was carefully, fearfully and wonderfully made. I love him and I don't know him yet. I will pray that you can rest fully in the Lord and in HIS word. Love you!!

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  22. Praying you feel our Father's love and that He gives you His strength, wisdom and peace. We love you.

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  23. I am not sure why God sent me your story to follow but I have read your blog almost daily. The love and trust you have in Jesus is contagious. Please know that while you write the blog to keep everyone up to date, you are ministering to others as well. I am in Nashville Tennessee and are so used to miracles at Vanderbilt Children's Hospital. Please know that if having Seth here ever makes sense, you have a place to stay and a family that will support you anyway we can. I would say "Stay Strong" but you obviously have that mastered. It is All Good!!

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  24. I've been following your journey since the day your babies were born. Never have commented until now. I guess more than anything I want you to know that Jeremiah 29:11 is filled with Truth. Praying that you guys will continue to lean on Him rather than your own understand!! Much love from Conway, Arkansas!!

    Steve and Joanna Lasiter

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  25. I remain so very touched by your situation and continue to pray for little Seth and all of you. I agree with your mom that it is a win-win situation for little Seth. I do also know the heart of a parent and pray you can have much more time with him here on earth.

    Still in constant prayer,
    Mary Davis (Kim Craven's mom)

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  26. Carrie, my heart goes out to you, and I am weeping with you! I hope and pray that Seth will be healed and that he will be able to grow up with his siblings! I can't help but to think how difficult this must be on you, as you are being pulled in so many different directions with Seth, the other four babies, and Isaac. It really is a balancing act, and I imagine it is quite overwhelming at times. I pray that you will receive the help that you need so that you can focus on LOVING on each of your precious children.
    With HOPE for Seth and prayers for ALL,
    Wanda Cummings

    P.S. And by the way, you are doing a WONDERFUL job at blogging-- you are explaining things so well!

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  27. Hi Gavin and Carrie - I don't know if you remember us from the PCPC sunday school class days - I saw your news story recently and was delighted to see your sweet babies!!! I'm so sorry to hear about your precious Seth - we are lifting him up in lots of prayer right now. praying for your whole family, that God will surround you with HIs grace, comfort and peace. Your kids are all beautiful - I can't believe you have an 8-year-old too! We live in Allen now (just moved) but I would LOVE to come help you all when you get home - bring food, snuggle babies, give you hugs... keep us posted. Love you and are praying for you! -Katie and Peter Brunone

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    1. Oh my goodness, yes, of course we remember you!! I would love to see you! Tell me about your family now, please! And thanks so much for praying. :) Love, Carrie

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    2. i would love to see you too!!! i have no idea when would be a good time - i can be fairly flexible during the day till school pickup. if you get a chance you can email me at katiebrunone@yahoo.com. :) love you guys and are praying lots for you!!! :)

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  28. My heart is heavy as I write, Carrie and Gavin, but I know that God is in control and he loves little Seth even more than you do. I am praying for all of you and that the Lord will give you His strength for each day. Sending you love and hugs from Ohio.

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  29. Carrie and Gavin,
    I am so sorry to hear this difficult news but we will continue to pray. Your mom was right when she said "Seth wins either way!" Praying for strength and wisdom for you both and all involved. Love and prayers, Kara Milligan

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  30. I know first hand as a grandmother how difficult this news is to handle,have been following your blog since day one. We were in NICU for 7 1/2 months my precious granddaughter was diaginosed with the same mutation. I have wanted to write so many times,because Seth's journey is just like reliving her journey, but have had mixed feelings because our precious one is now an ANGEL and never could find the right words. But today I just want to say, Enjoy every moment you can with Seth, take lots of pictures and give and receive every ounce of love you can. I pray for strength for you all. I know God will give you exactly what you need to be able to handle it all.Thanks so much for sharing your journey with us on your blog.

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    1. Thank you so much for finding and writing the right words now. Do you know if your granddaughter had the "full-blown" ABCA3 mutation, or was it on just one chromosome like our Seth? Thanks heaps for your encouragement and for reading the blog! Love and gratitude, Carrie

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  31. Carrie,
    You do not know me, but I have been following your blog since your babies were born,
    I can not wait to read yor post each day & see how the babies are doing. I too had a NICU baby, 2 to be exact, but the second one was there for 6 months & 27 days. Our sweet Cortlynn was also born at 27 weeks & weighed 2 lbs. 7 ozs. As I read your blog each day, reading about Seth is exactly like I am reading her story over again. So far their stories have been exactly alike, and as I read this morning about his diagnosis of the ABCA3, my heart sank, because our little girl had this too, (we have now found out through genetic testing that I too, as well as my youngest son have it also). I'm sorry I do not have a miracle story to help encourage you with, because after 6 months & 27 days, our sweet Cortlynn went to Heaven. We prayed daily for her healing & were shocked when she went from perfectly fine one day, getting ready to come home, with nursing care of course, to gone a week later. It took us a while to realize that God did ultimately heal her, just not the way we had invisioned. I just wanted to write to you as someone who has been in your shoes, (although only with one sick baby), to let you know, DO NOT ever give up on Seth, no matter how sick the drs. tell you he may be, if the time does come that he is not gonna make it, you will know, ENJOY every moment with him, & take LOTS & LOTS of pictures, the nurses would make fun of me for how many pictures I took, but now I have tons of pictures to document her life & to be able to go back & look at daily! If the oppurtunity arrises to have him trached, DO IT, that was the best thing we did for her, she was so much more free, with her trach, as well as we were able to see all of her beautiful face with no tapes or tubes. Love on him & tell him how much you love him each day, & spend as much time with him as you can, because I promise you those 6 months & 27 days were some of the best times of my life! As one of our NICU nurses told us when she was diagnosed, It doesn't matter how long a person's life is, 1 day or 100 years, a life still has a purpose, & hers did, she blessed us & everyone that heard her story tremendously! As for you sweet baby Marcie, & forgetting to breath, it may be more of doing it on purpose :) Cortlynn would do this too, just for attention, if her nurse left her side, she would hold her breath till her monitor went off just so the nurse would have to come back to her. I will continue to keep you & all of your sweet babies in my prayers. Keep doing the amazing job you are doing on this blog, it will be wonderful to look back on one of these days, to remember how far your babies have come!
    Sincerely,
    Nichole Doty

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    1. Thanks so much for taking the time to share your story and advice/experience. I assume she was heterozygous ABCA3 rather than homozygous as you were the only affected parent? What was it that caused her to go downhill at the end so quickly? I am so much wanting any info I can get on this; new, deep waters for me. I am so sorry for your loss and thankful you are sharing Cortlynn's life with us. Love, Carrie

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    2. Carrie,
      I will answer the question for the above 2 posts. The first post from the grandmother was actually my mom. No Cortlynn did not have the full blown ABCA3 hers is just like Seth. Cortlynn was trached at 3 months, but we never could get her oxygen levels down lower than 40%. She was on a conventional vent & was going to be transitioned to a home vent to come home, the week before she passed away. The dr. told us she was a very sick baby & normally he would not send one home in her condition, but we wanted her home bad we had nursing care set up for home, actually one of her NICU nurses had signed on with the home nursing company to be one of her home nurses. We were mainly waiting for RSV season to be over in March & for her to reach 11 lbs. which was the requirement from insurance for a home vent. She weighed 9 lbs. 13 ozs. Cortlynn ended up getting a bacterial pneumonia called, Pseudomonas. She had actually had it twice before the first time she was really sick, we had to wear masks & gloves & take them off before we left the room as if not to spread it to the other babies when we walked through, they were even nervous about us spreading it to our 2 kids at home. The 2nd round was not bad and she got over it very quickly with the help of antibiotics. So when she got it the 3rd time we were not really worried about it we found out she had it again on a Wednesday, she had been running a low grade temp but overall was still acting normal, the following day the nurse called me & told me something was not right they had to turn everything completely up oxygen to 100% nitric all the way up etc. the dr called me & told me he did not think she would make it through the night, by the end of the night, she was stable but they had her sedated our last time seeing her move or her eyes open was a video my mom took that night of her trying really hard to "roll em up" as in Patty cake, which I had been teaching her. She hung on but by Sunday the dr told us we needed to decide when we were going to let her go because she was just not recovering We cried alot & prayed about it, even had the dr talk to our boys to help them understand what was fixing to happen I told my husband you are supposed to be able to pick alot of things for your child, their clothes, their names, sometimes even their birthdays, but not the day they die. It was the worst thing ever, but we decided, as long as she was not in any pain which the dr assured us she was not & if she had not improved any, then the following Wednesday would be the day, when we got their the following morning, on Monday, she was doing horribly, her brain was starting to swell & organs were starting to shutting down, the dr told us he thought she was probably in pain now, we looked at each other & knew it was time, I thanked God & her for picking the day for us. We got her dressed, called all of our family, which they let all come in and spend time with her, I held her for several hours, & then when it was time, we took her downstairs to an outside Prayer Garden, they bagged her until time & then she passed away peacefully in my arms. It has definately been hard, but all the time we spent with her will be cherished forever. Our Dr told us that a lung transplant would be her only chance of survival, but being that she was a preemie, they would not even consider her. He also told us that even if she had recovered from the Pseudomonas this time, eventually it would have been what would have gotten her how he explained it is that when you have it the antibiotics do not kill all of the bacteria, a little bit of it stays behind, & each time it becomes a little more resistant to the drugs. Right now there are only 3 drugs to kill it, once it becomes resistant to each of those, there is nothing else for it, if that makes sense? Sorry my post is so long, but if you have any other questions, I would be glad to answer what I can.
      Love,
      Nichole Doty

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    3. What a hard, heart-breaking disease. Thanks so much for sharing. I don't really have any questions now, but I'm obviously deeply concerned that Seth's story is sounding so close to hers. What gestational age was she when they were able to put her on conventional? We aren't even there yet! We want to have him trached so we can hold him as soon as he can tolerate it, plus get that tube out of his mouth, of course. All we can do is patiently wait on the Lord through this. It's SO hard, as you know even more than I do!! I am tempted to discouragement and despair. Thanks again for caring and praying. Carrie

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    4. Carrie,
      Being in the NICU is a roller coaster in itself, but with the ABCA3 it is even more so! There is not alot of research with this disease so it is hard for drs to know how to treat it. I am not sure what age Cortlynn was when we switched to the conventional vent, we switched vents so many different times I don't want to tell you wrong. I am going to look in my notes that I kept each day for Cortlynn tonight to see when we had her switched. The major desats you were talking about with Seth today were all too common, matter of fact, Cortlynn lived in the 70's the majority of the time. We got to where we could tell just by her color if she was ok or not, no matter what that monitor said. Our doctor would sometimes turn up her oxygen just for higher sats, he felt that a higher oxygen setting for higher sats was better for her in the long run than lower oxygen & lower sats, even though it was so hard to turn it up because it felt as if we were going in the wrong direction. Do you happen to know what the medicine is they are giving him to keep him calm & less agitated? They gave Cortlynn a medicine called Ativan, I hate this medicine with a passion, it would relax her so much that she could not breath or remember to breath, every single time they gave her that she would do horrible & sat extremely low, for long periods of time, a few times it caused them to go all the way back up to 100% on Oxygen & 20 on Nitric, made me furious, I finally had to put my foot down & request that they put in her chart that she could not have this medicine! Just wondering if possibly Seth was on this too? I will get back with you tomorrow about what age we were when we switched vents. I do know that he is gaining weight really well, we were only 4 lbs. 7ozs. at 2 months old, so go Seth!!!
      Nichole Doty

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    5. Ok, it's me again, I looked last night & we were actually on a JET ventilator, not the Oscillator, we tried the Oscillator several times, but it just did not work for her. Cortlynn was switched to the conventional vent at 5 weeks old, almost 33 weeks gestation. We were still on very high levels of oxygen, mainly in the 80% range, but would often be turned all the way up to 100% and have to gradually wean back down. She was trached at 11 1/2 weeks old, which was exactly 39 weeks gestation. The dr. first told us she could not be trached until 6-8 months of age, which devastated me, but finally changed his mind & went with when she was over 5 lbs. & they thought she could handle the surgery. She also was excubating herself from fits that she would throw, because she was extremely uncomfortable with the tube in her mouth. I was able to hold her at 5 1/2 weeks old, and 33 weeks gestation, they would only let me hold her at this time, but it was while she had the et tube, so I was just wondering if your hospital had a policy on them having to be trached first? Or is it just that he is not tolerating being touched? I tend to think she started doing better once I was able to hold her everyday, maybe it just made me feel better, I'm not sure, we still had many tough times, many episodes of low sats, bradying, being called up in the middle of the night, or turning around & going right back up there after making the 35 mile trip home because things didn't look good, seizures, etc. Pretty much if there was something that could have happened, it did, so I hope & pray that your ordeal with Seth is much better. I'm still praying for all of the babies & you.
      Take care,
      Nichole Doty

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  32. always praying for baby Seth and his family

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  33. Please know that many prayers are being lifted up to the ONE who can heal Seth!
    Prayers & Blessings,
    Jillian
    North Carolina

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  34. I am touched by these "strangers" who write to encourage and empathize with you in ways that so many of us cannot. Know, though, that we love you all and are praying daily for you all, especially Seth in these recent days. My encouragement to you would be this: even while we are all praying for THE miracle, I encourage you to be watchful for the little miracles that are happening all along the way. From your posts, I believe that you are doing this, but to do it intentionally gives it a different twist. God IS moving. God IS working ... look for the evidences of His loving hand! No matter what ultimately happens, you will remember these mileposts! Again, we are joining you in praying for THE miracle that God will heal him here on this earth, but know that He has all creation within his power and control and praying for His will to be done. We love you! sharon b.

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  35. Praying, praying, praying. Hoping that I might be able to lend a hand for some hours next weekend. We love you.

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  36. My heart goes out to you all and my prayers are with you! Praying that God will lay his healing hand on Seth! Much love and hugs!

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  37. I'm in Georgetown, because yesterday my Mom started complaining of chest pain, so I left town and I've been out of the loop on what's been going on. My heart is breaking and sad for his present struggle and your uncertainties. You all such a dear family and little Seth such a precious soul. Mark and I lift your family up frequently. We love you. Dana Red

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  38. Dear Carrie, I continue to prayer for your family and especially Seth. If I were closer to Texas and not caring for two medically/special needs ex preemies I would come help your family in a heart beat. I know some day I will get the chance. Sometimes I think half the battle is knowing what your fighting. Be strong for your little man and your other precious ones. My prayers will always be there.

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  39. I do not know your family at all but I have been reading this regular and I have been praying for your family! I pray for each one of your children and precious Seth! I am sure there are so many people lifting your family up in prayer!!

    Carol Miller

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  40. Wholehearted prayers with you ALL.

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  41. I have been reading your blog regularly and praying for Seth! I had tears this morning when I read, just before teaching school. Will be praying for your family. I am in Ga but sure wish I was closer so I could help! He brought me back from death three years ago! He can heal!! Melissa

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  42. Family Support Group

    chILD Foundation Mission
    The Mission of the Children’s Interstitial Lung Disease Foundation is to provide support, education and hope to families affected by a pediatric interstitial and diffuse lung disease and to accelerate research towards discovery of cures for these life-altering diseases.

    http://www.child-foundation.com/what-is-child-foundation

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  43. Praying! So thankful God has his hands around EACH of you!! --Terry

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  44. Praying for you all. May God strengthen and hold you tightly in His arms.

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  45. I'm on the mission field in Honduras and have been following your posts and joining the chorus of prayers all along, although I have not written before. I know the weight of such news, but just remember that God has the ultimate plan for little Seth, and He can do anything! Already Seth's life has provided you both with an opportunity to demonstrate publicly your love and trust in Jesus. Your testimony is speaking loud and clear! And yes, Seth will indeed win either way.

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  46. Dear Ones
    My heart is breaking as I write this. I Love little Seth so much already and pray for all the babies several times each day and also for my darling Isaac. God Bless you all. God does have a plan and his will be done. love you all

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  47. My heart is heavy as a read about little Seth,I have been praying for your babies daily.Amy alerted on facebook that there wqs a problem so I came right over to your site.I write this with tears in my eyes. Mary Lee (friend of Amy Rice)

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  48. Always praying. And today, crying with you as we wait to see how God will show his grace.

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  49. My son has ABCA3. The first couple of months of his life were very difficult. When his condition was diagnosed we did fear the worst. However, he responded well to treatment and is now nearly three and is leading a fairly normal life.
    He was treated with Prednisolone and Hydroxychloroquin. Other children with ABCA3 have now been having the same and all seem to be respondong well. It's worth discussing this with your doctor.
    Professor Bush at the Royal Brompton Hospital in London may be able to help. CHILD Lung Foundation UK is also worth a look for info and support.

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    Replies
    1. THAT IS GREAT TO HEAR THAT, SO GLAD HE IS DOING GREAT....

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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