Pages

Thursday, July 24, 2008

Tricia/Gwyneth Update

Forget nausea and pain meds...if only everyone had a Gwyneth to snuggle with during chemo, the world would be a much happier place.


Tricia did very well with her first round, although they say that some the side effects can present themselves over the next few weeks. She did hurl this morning, but that was after she had received sedation and pain meds of having another portacath placed this morning (the port will minimize the risk of infection during the chemotherapy treatments over the next few months...you may remember that she had a port, which was removed shortly before her transplant).

Also, she decided not to have her G J feeding tube removed. Chemo can often affect the appetite, and with her CF and other issues, Tricia already has a difficult enough time as it is maintaining her weight, so the feeding tube will be a safety net in case she doesn't feel like eating at times.

And, Tricia was seen by an ENT doctor, who examined her throat and told us that her left vocal chord is paralyzed from the transplant surgery (common with heart/lung transplants). Tricia's voice has been weak and raspy since the surgery because one of her vocal chords is slightly out of place, which means it is not vibrating the way it should be. I explain more about the options to "fix" this later.

Also, the artery in Gwyneth's heart is still open, but it normally takes a year or two for it to close if it doesn't close within a few days after a full-term birth. If it never closes, they'll fix it with a minor surgery when she's 4-5 years old. We'll have a yearly appointment to check on it, and it should not cause any issues.

Anyway, we're sitting here, hoping that Tricia will be released in time for us to head home this evening (especially since I packed up and checked out of our hotel this morning).

Thanks!

Nate

98 comments:

  1. "so far, so good" is great news for today! That little Gwyneth is good medicine for just about any ailment, I'm thinking! :)
    I'll be praying that they spring you from there real soon, now...and you will have an uneventful ride back to the beach tonight.

    ReplyDelete
  2. Thanks for the update...Prayed for all 3 of you this morning...Hoping you are able to return home this evening...

    ReplyDelete
  3. God Bless your family!!!
    Prayers are coming your way!!!!

    ReplyDelete
  4. I am praying for you and your family. Please take care.

    Lola/Delaware

    ReplyDelete
  5. What a sweet pea!! Yes, I am sure that GR strengthens her (already incredibly strong) resolve!!

    ReplyDelete
  6. I totally agree with your first statment :-)
    Hope you guys can go home today!
    And things improve for both girls.
    Laters
    Kristen

    ReplyDelete
  7. I bet Gwyneth makes everything more tolerable!! How can a sweet baby not? Glad that so far Tricia is doing OK with the treatment. I'll pray that the side effects won't be so bad. Hope you all get to head home today too.

    ReplyDelete
  8. Snuggles and more snuggles. I wish you the best snuggles through this whole thing. Sweet precious Gwyneth. Hang in there little family.

    ReplyDelete
  9. You guys are such amazing examples to the world. You have been through so much and continue to travel the road of trials, but yet you're still smiling. I love that. Thank you for your blog, I have grown to love you all, complete strangers, so much. Wishing you the very best!

    ReplyDelete
  10. Sending lots of Hugs and Prayers your way today from the other coast over here. I hope you will be going back home to the beach tonight too. I think you are missed at home. Praying for Tricia big time.

    Love, Laurie in Ca.

    ReplyDelete
  11. What a GREAT picture. Thinking of all of you-I pray that the chemo side effects do not come and that you have a safe drive home this evening.

    ReplyDelete
  12. I've been thinking about you all today, particularly of Tricia. Thanks for the update.

    As I mentioned yesterday, my sister's 31.something-weeker had a similar issue with his heart. All will be well, whether surgery is needed or not. I believe it.

    ReplyDelete
  13. Ahhhhh... I love that picture!

    Will continue to pray for everything... especially that y'all get the boot tonight!

    ReplyDelete
  14. Thanks so much for the update.I'm praying that Tricia is released anytime now if not already & you three amazing people have a wonderful trip home.What an awesome picture. Gwyneth is so precious.
    Praying in Missouri
    Bonnie

    ReplyDelete
  15. may be one of the sweetest pics you've shared yet. From the daughter of a mom that had cancer, all the side effects and meds sound familiar. Lots of prayers

    ReplyDelete
  16. Thanks for the update, Nate. Glad to see the girls snuggling in spite of everything that's going on :) Still praying & loving you three a lot!

    ReplyDelete
  17. sweet sweet picture. Praying for you guys. have a safe journey home

    Diana

    ReplyDelete
  18. Still sending prayers to your sweet family.....

    Also wanted to say that my oldest daughter had a tiny hole in her heart as well (atrial septal defect). I'm not sure if that is the same diagnoses as Gwyneth, but anyway....

    Doctors monitored her, and the hole never caused a problem, but it didn't fully close until she was about two and a half. Hole in the heart sounds so very scary, but it never caused a problem for her. I'm sure the same will be true for your sweet girl.

    ReplyDelete
  19. I can't imagine going through all the things you three have gone through. I just want to give you all a great big hug and make it all better. You are continually in my prayers. I'm sending all good vibes your way.

    ReplyDelete
  20. Hi Nate and Tricia,

    I can't remember how I found your blog, but I have been following for several weeks. Thank you for your continued testimony of our great God in the face of such a great trial. May our Jesus give you great comfort during this season of difficulty you find yourselves in.

    ReplyDelete
  21. still praying!

    your family amazes me! and little gwyneth is just precious!

    ReplyDelete
  22. Beautiful photo. Hope you are on your way back to the beach and loving family now. Tricia is very wise about the feeding tube. I know it's a drag to still have it, but it seems like a great idea for now. Prayers continuing.

    ReplyDelete
  23. Thanks for the update. I've been thinking of you all today. Keeping you in my prayers.

    Mary
    Florida

    ReplyDelete
  24. I am always amazed at how you all have dealt with the many curve balls that have been sent your way. I'm reminded of Job, and how no matter what Satan tried to do, he would not stop praising the Lord. It's so refreshing to see such Job-like faith. We're praying for God's continued blessing upon the 3 of you!

    ReplyDelete
  25. My port made my life so much better. I just sorry Trisha has a use for it. I am praying for you guys.

    ReplyDelete
  26. I know that I don't have any words that can change things but please know that you are in my thoughts.

    ReplyDelete
  27. Baby snuggles are definitely some of the sweetest medicine! You're all in my prayers.

    ReplyDelete
  28. Wow....I've been following your blog for some time, and i've been awed by your families tremendous faith. I've been thrilled seeing how your daughter has grown and developed in the photos you post. I've been humbled by the beautiful relationship you have with your wife. I have been praying for you guys, and will continue praying for Gwyneth's growth and health, for Tricia's health and ability to endure the necessary treatments, and for you as you care, watch over, and worry about your girls. I have not commented before because I have not felt that I had anything new to be said that everyone else has posted before me. Until now. You mentioned that Tricia has a paralyzed vocal cord (and i realize that you are dealing with other, more serious health issues). I wanted to share that a speech pathologist may be able to help. You can look at the the ASHA (American Speech and Hearing Association) website for more info. I am an SLP, and have some limited experience with voice therapy. Good luck, and as i said before, I'll continue to pray for your entire family.
    Kirsten, Long Island New York

    ReplyDelete
  29. Hoping for a safe return home. I curious about the vocal cord situation. My mom had the same thing with some surgery of hers. It has taken a long time for her to sing again. They were beautiful notes. I will be interested to hear what Tricia's ENT does for her. Keep us posted and safe travels

    ReplyDelete
  30. Good news! I've been praying for you guys. A family friend of ours started the big time chemo a couple of months ago. She did lose hair, but was otherwise unaffected- so here's to hoping that Tricia will experience uneventful effects...

    ReplyDelete
  31. We continue to pray faithfully, especially for Tricia's treatments! There's NO medicine like snuggling your baby!! :) So thankful that Gwyneth could be by Tricia's side today. We'll be praying for this chemo to be effective, with MINIMAL side effects. Thanks for the regular updates-that way we can pray specifically.

    Love, hugs, and prayers,
    The Edwards

    ReplyDelete
  32. STRONG .... that is what Tricia is. Praying for all of you :-)

    ReplyDelete
  33. Thanks for the update.The picture was priceless.

    ReplyDelete
  34. Just another complete stranger that happened upon your blog. Your story and journey touch my heart. I will be praying for you all.

    ReplyDelete
  35. Praying for you all.
    Blessings-
    Andie

    ReplyDelete
  36. I am earnestly praying for you right now. God is enabling you to have such an amazing testimony to His peace and strength right now. You are a real challenge and example to me and I don't have the trials you have had and continue to have.

    May God continue to uphold and keep you all.

    love and prayers.
    xxx

    ReplyDelete
  37. Oh, I'll bet Gwyneth is a wonderful little snuggle bunny! We are praying for all of you!

    ~Sara in MD

    ReplyDelete
  38. Oh yes life is sooo good when there is a baby asleep on your chest!

    ReplyDelete
  39. Will be praying for you guys. Especially Tricia...I hope that you don't get too much of the side effects from the chemo drugs.

    Every time I come on to read your blog, my mind boggles at the courage and grace you have rode out this journey with.

    ReplyDelete
  40. That's such a sweet picture! I hope Tricia doesn't get too sick from the chemo. I'm praying for her recovery and for the rest of the family.
    Aspiemom

    ReplyDelete
  41. nothing like a baby to make anyone realize the important things in life!

    praying like crazy for your family.

    ReplyDelete
  42. That is a sweet photo of Gwyneth & Tricia :)

    ReplyDelete
  43. Nate,
    Thank you so much for keeping us updated. I am keeping your family in prayer and I have to say, You and your family are an inspiration to me at this time in my life. God continues to work miracles through your family. God Bless You.

    ReplyDelete
  44. At the risk of being extremely repetitive..

    That may be my favorite photo yet. What a beautiful circle of Mother & Daughter giving and getting comfort.

    Always praying.

    ReplyDelete
  45. Beautiful picture. I'm happy things are looking good so far.

    ReplyDelete
  46. Great photo!
    Thinking of you. :)

    We have a friend that had a kidney transplant when his daughter was a baby and she brought him such comfort just sitting with him while he was recovering. Sweet!

    ReplyDelete
  47. I am praying for you guys. You've had so many storms, and your faith is so strong. You are awesome!!

    ReplyDelete
  48. I continue to follow your lives and bring you before our Father. My 12 year old daughter reads your blog as well. It's a wonderful testimony of your faith in God and His mercy and grace in our lives.

    We are continuing to pray for your precious family.

    ReplyDelete
  49. Thanks for the update. Praying that Tricia will be free from those yucky side effects from the chemo and that you can all enjoy some time back at home.

    ReplyDelete
  50. Everyday Tricia, Gweneth and you inspire me a bit more as a person and in my faith. I will keep the prayers going for you all.

    ReplyDelete
  51. Nate, I just wanted to tell you that a close friend of mine's daughter had that hole. She was a full term baby. Anyway, it didn't close and she did have the surgery when she was 4 and she did so great! Just wanted to let you know that someone made it through very well and maybe alleviate any fears you may have had. Hope things are going well with Tricia and Gwyneth. And with their caregiver:-)

    ReplyDelete
  52. Prayers and well wishes coming your way!

    ReplyDelete
  53. I have read your blog for months now.I want you to know that you are all being prayed for.What a precious family you have!We have a blog also(africa6.blogspot.com)but I have not updated it in a while.We will keep praying for your family.Shawn and Loni Olson,Oregon

    ReplyDelete
  54. I think Tricia made a good call with the G-J tube. My youngest eats mostly through a G-tube and at one point had switched over to total oral feedings. I wanted to yank that bad-boy out after six months but my husband said "no, leave it just a little longer." Then the baby got sick again, and now we're back to 95% tube-feedings and I really would have kicked myself if the procedure had had to be re-done because I wanted to be rid of the tube-care. Also, is Tricia planning on getting a wig made? If so, my hair goes down to my hips and I could probably donate nine inches twice over. I'd be more than happy to do it.

    ReplyDelete
  55. Ports were just becoming popular when I had cancer. I didn't get one. I would pay BIG money for one if I ever have to have anything else done. Now, all of my veins are hard to deal with. I just pray that Tricia can handle this easily and get over this hurdle quickly. They are a pretty amazing team. I bet chemo is easier to handle with a cheerleader. YOU GO GIRLS!!! Hang in there Nathan. You seem to be doing a great job being "there". HUGS

    ReplyDelete
  56. Recruiting more prayer warriors for you guys. :) Lots of love to you! God's love and peace...

    ReplyDelete
  57. slow and steady..I hope Tric has minimal side effects from the chemo. I also hope you guys are driving home right now!! =)

    ReplyDelete
  58. Hang in there Tricia. If anyone can get through this (with God), it's you! I pray for mercy for you and that God will contiue to be the great physician and that you will not have to endure to many side effects of the chemo. In His love.

    ReplyDelete
  59. What a precious picture of Gwyneth helping her mommy feel better!

    Praying earnestly for her full recovery and comfort. We serve a big God!

    ReplyDelete
  60. Nate (and Trisha, and Gwyneth!) - I just re-found your blog today and spent most of my day catching up. What an incredible testament to faith, and God in every way you guys are. You're in our thoughts and prayers! (P.S. - put a link on our blog so others could follow your journey - and join us all in prayer for you!)

    ReplyDelete
  61. We continue to pray for your family. We pray for hope and encouragement and healing. May God continue to bless you as you walk with Him!
    - the de Boer Family - Kingston, Ontario

    ReplyDelete
  62. I agree the port is a good idea it makes it easier for chemo and of course blood draws.
    I have one and my veins are really bad so i still have it. Which is fine.
    About the feeding tube, I think Tricia made a good call on that. She has worked hard to get that weight to where it is. So good call on that.
    As for Babies and small kids while going through chemo. A huge plus!! I think its the best medicine possible right now.
    Love the picture thanks so much for sharing it.
    Thoughts and Prayers coming your way.

    ReplyDelete
  63. HUGS to you guys!
    Many more prayers sent your way!
    Your faith in our Lord is admirable!
    I have told your story to some friends of mine in my womens' group and they were all saying how encouraging it is to hear of your continued faith and trust in our Lord.
    Be brave!!!

    ReplyDelete
  64. We think about your family always...still praying and lifting you all up to our Heavenly Father...
    Keep your chins up..

    Nadine

    ReplyDelete
  65. This picture really shows how big your little girl is getting! Glad to hear that Tricia is feeling okay right now. We'll keep praying that it will stay that way.

    Praying for her vocal cord and for Gwyneth's heart too.

    ReplyDelete
  66. Thanks for the update!!
    In Snohomish WA we are praying for your family.

    ReplyDelete
  67. I have just spent some time catching up on your blog. I haven't been online much lately, but you all continue in our daily prayers.

    Blessings!
    Amy in Orego

    ReplyDelete
  68. We are certainly still praying here

    ReplyDelete
  69. What a sweet picture. Thanks for the update. I am continuing to lift you guys up in my prayers.

    ReplyDelete
  70. What a cute picture of the two of them.

    ReplyDelete
  71. We are thinking and praying for you in FL. Your faith is a testimony for us all! To God be the glory- and may he bring you and your family strength, comfort and peace.

    ReplyDelete
  72. You're doing it: accepting His grace and putting one foot in front of the other and glorifying your Savior every step of the way Home. Thank you for letting us watch and stand in the gap for you.

    ReplyDelete
  73. Nate and Tricia, I will continue to pray for you. I wish I could offer some encouraging words, but seeing as how I only know what you post and have never been there, I have nothing to make you "feel better." (As if) I guess all I have is "Blessed be the name of the LORD," and I am one of thousands standing in the gap. I have not stopped praying for you guys.

    ReplyDelete
  74. Hope you all made it home tonight...

    Blessings & strength,

    Amy
    Southern CA
    www.caringbridge.org/visit/rosegirl

    ReplyDelete
  75. We trust your home and getting some rest. We are praying for you guys. "One day at a time."

    ReplyDelete
  76. Sometimes the things the docs do to "help" us through something else cause more trouble than it was worth to start with! Hopefully she will be able to figure out quickly which meds help, hurt or are just unnecessary for her.

    Have they offered thyroplasty for the vocal cord? Seems to be a pretty successful procedure from the cases I've been exposed to.

    I'm glad to hear that Tricia chose to leave the feeding tube in. Good safety net as you say. CF presents so many difficulties with weight issues, and 1 big thing necessary to heal, heal, heal, and fight off everything else is enough protein-caloric intake on a daily basis.

    Continuing to pray for you all. Gwyneth looks absolutely smashing. I cannot believe how big that baby is now! every time I see a new pic of her I think "WOW!! has she grown in just the last few days or what!!"

    Hope you got to go back home last night!

    ReplyDelete
  77. Praying for you all. Hope she made it out of the hospital in time to get home. Thanking God she has her sweet Gwyneth and her wonderful husband by her side to make her feel better.
    Prayers and Hugs Rachel in PA

    ReplyDelete
  78. From the look on her face, it seems that Gwyneth is happy to have her Mommy back. It just melts anyones heart.

    ReplyDelete
  79. Thanks for always taking the time to update. I pray for you all every day.

    Gwyneth is good medicine. : ) What a blessing.

    ReplyDelete
  80. We are praying for you in Mexico and around the world. May God be glorified through your faithful witness and may He bring healing, peace and comfort. Keep the faith.
    In Him....sherry Bielinski

    ReplyDelete
  81. I know, I know...life is...life. But I so pray for a vacation from it for you guys. Just a little break from any physical problems bigger than a splinter. I'm glad its God in charge, He tends to know more than me :) ANYHOW, praying...

    ReplyDelete
  82. That picture does my heart good. :) It's precious.

    Praying for no side effects..

    ReplyDelete
  83. What a beautiful picture.
    I pray that Tricia does not have the side effects that come along with this treatment.
    Nate, Tricia and Gwyneth you are all in my thoughts and prayers.

    ReplyDelete
  84. Nate, Tricia, & Gwyneth,

    I’ve been following your blog for quite some time, so I finally decided I want to take the time to let you know that I’m praying for you all! You all have been through so much…yet your faith is still very strong! Beautiful picture of Tricia and Gwyneth…I sure think that’s a smile on Gwyneth face (She is very precious!!)! Also, I wanted to let you know that I too have a paralyzed vocal cord and went through speech therapy first but ended up having thyroplasty surgery to ‘fix’ it so I’m here if you’d like to know what my experience was from it. Lastly, I cut off about 12 inches of my hair a couple of months ago and have been meaning to mail it off to an organization and just haven’t gotten around to it…if needed, I’d be honored to donate it to Tricia, just let me know. Again, you all are an amazing family and I will continue to keep you all in my thoughts and prayers!

    ReplyDelete
  85. I hope that little Gwyneth is able to give Tricia a light of hope to hang on to during this time. Your wife's strength continues to amaze me and everyone else I share your story with. I'll be praying for her.

    ReplyDelete
  86. Oh Nate and Tricia, With this new schedule of not being able to check in on y'all 24/7, it was jarring to read about the last few days. you know I am sure of the poem called ""footprints". Well there surely must be lots of y'alls days that show one set of footprints, as the lord has HAD to be carrying you through all this. I pray and pray for y'all. You must be feeling not only beat up, but sucker punched. But then there always seems to be a "bit" of positive factors to keep hanging on to. I love you all and pray Jesus will continu to hold you gently during this time. I know y'all are tough, but surely SOON some of thse "bumps' and "mountains" will level out. Know you are well loved by stranger friends all over the world and we will not cease our prayers. Hang in Lawrensons.
    God Bless you all
    Jamie in Texas
    PS If the docs think heat could help you girls, feel free to visit. Triple digits all week with no end in sight :)

    ReplyDelete
  87. I hope Tricia won't feel any worse than she does right now. Prayers for a safe trip home.

    ReplyDelete
  88. What a beautiful picture. A picture of contentment on two faces--it looks like Gwyneth is smiling, too! And I'll bet there was a 3rd smiling face in back of the camera.

    ReplyDelete
  89. I'll be praying for Tricia to do well with her chemo and beat the cancer, and for all of you to continue to take things day by day, enjoy life as much as possible, and cope with the challenges.

    ReplyDelete
  90. I know that when I was going through chemo I sure would have liked to have a precious baby sleeping on my chest!

    :) Tami

    ReplyDelete
  91. Just found your blog a couple of days ago. I've been praying and will continue to. Nothing more precious than that picture of Mom and baby girl. Just picture this... Mom and baby girl in the palm of God's hand! God is in control, He loves you, and He can't fail! Looking for more good news!!!
    Ingrid

    ReplyDelete
  92. God i just pray,for you to totally bless Tricia & heal her of this cancer, & i pray for you to be with her, be her peace , be her strength, shield & song , be there for her in all areas that she needs you both now & in the future. GOD BLESS TRICIA!!! get her through all this God, i know you will, just like you have before! She has such faith & trust in you Lord Jesus, bless her for that, in Jesus name i pray
    A.M.E.N!!!

    ReplyDelete
  93. you guys are in my prayers

    god bless you!

    ReplyDelete

Thanks for taking the time to read my blog.

This blog receives many spam and troll comments. Please, do not respond to the spam or troll comments in any way. I am constantly monitoring and deleting comments, and I reserve the right to delete any and all comments related to spam and trolls, including responses.

Thanks!