Tricia was very alert and "awake" for most of the day. By awake, I mean her eyes were often open, but her gaze was distant. She can't talk because of the trachea and vent, and she has been trying all day and night to communicate with me. I have never been good at reading lips, and while the nurses have tried to help, we've only been able to figure out a few of the things she's been mouthing. It's been incredibly frustrating for both of us, and at one point, she started to cry, and then I started to cry...I pray for us every time it gets frustrating (and thank God every time for all of you). We have a dry erase board, but she doesn't even have the strength to hold the marker, much less write anything (thank you for the suggestions about this).
Gwyneth was placed on the CPAP, but did not like it very much and had to be intubated again around 9pm. That's OK with me, as she is much more stable. The nurses and staff down there keep apologizing and explaining things, and I keep telling them that I've spent too much time in a hospital for all of this to phase me and that they'll have to do a lot more than poke and prod her to get me concerned.
I'm writing this at 1:45am...Tricia asked me to stay the night, which I was more than willing to do. I've spent most of my time trying to meet her needs (again with the lack of good communication), and have also played/sang a little for her. I'm taking a quick break right now out in "the hole" to update and chill for a minute.
To answer an important question...a few months ago, Tricia and I moved out of the house that we were renting for over year. The day after we moved out, my grandmother moved in. She is taking great care of Ralphie. He was named after Ralphie from "A Christmas Story". Ralphie and Meka are really best of friends.
Nate
158 comments:
I hope Tricia can come off the vent etc soon! Can't imagine what it must be like. Will send up a prayer right now..
Nate,
Sorry today was such a tough day for you guys. Casey and I are getting ready to go to sleep - actually he fell asleep on the couch while I got up to check your blog. Anyway, we will lift you three up in our bedtime prayers and pray you have a smoother day tomorrow. It must be very difficult not to be able to communicate with your love. Will pray that all gets easier and that you get some rest. Give our love to Tricia and Gwyneth. Talk to you soon.
God's love and peace,
Amy
You're kitty looks like one of the 5 that inhabit my house. I have spent today reading all of the enteries on your site. I too am a married 25 year old woman with CF. My husband Matt reminds me very much of you Nate. We do not have children, and do not know if we will have them. I am not quite to transplant range, but flirt with it every time I have an infection. The triangle is not a bad area to be if you have to be stuck somewhere. My sister spent a few years living in Chapel Hill. I look forward to hearing about the day that you, Tricia, and little Gwyn get to take a walk through the Duke gardens.
Praying very hard for you. So much of your's and Tricia's relationship reminds me of my husband's and mine.
Talana
Praying for both your girls and for you too! I can't imagine how emotionally exhausted you must be on top of being physically exhausted. Still the fact that Tricia's waking up and trying to communicate more is a blessing. I will pray she wakes fully and continues to improve. Praying God will ease your and her frustrations, anxieties, worries, etc. and fill you both with calming peace. Praying for Tricia's parents and sisters too, and of course for sweet Gwyneth.
Love, Leslie
we're up too :)
one thing that may help the communication breakdown while you both get used to life w/the trach is to get trish a small dry erase board & marker. she can communicate by writing her words. i had a friend who did this during vocal rest back at liberty & it worked wonders for her & her husbands' relationship during the "silent" days. our trach nurse back at unc also suggested something similar to consider when we were planning for teaching isaac to communicate as he grew...picture boards or dry erase boards. just a suggestion as i know you'll know what's best for your girl.
get some rest! we'll be back in durham again soon. be thinking of what treats you may want us to bring :)
Praying for an easier tomorrow...
Is Tricia able to write? Maybe a small dry erase board could help? I know you said she is very weak right now..just a random thought.
*hugs*
It's been a hard day's night, you should be sleeping like...Meka? Hang in there and do get some rest! Funny, when I was praying for you guys last night that's what popped into my head...to pray for sleep. You need it to stay strong for your sweethearts, so don't feel guilty about taking that time for yourself.
Have you thought of a white board or whatever to communicate with Tricia? Big white sheet of paper, with commonly used words and numbers on it. Write 'em big and give her something thick to point with. I remember my mom being on the vent and it made her weak and unable to hold the pen to write. Think those chubby crayons they give to toddlers and you have the right idea! Anyway it might cut down on her frustration to be able to somewhat talk to you!
Many prayers being lifted up for all of you!
Praying for an easier tomorrow as well for both you and Tricia. May God help the three of you. You are all in our prayers.
Our handbell choir prayed for the women in your life tonight. You and your girls are in my prayers often throughout the day.
spent some time praying for you 3 tonight...for Tricia to be peacefully alert. For Gwyneth to grow, grow, grow and poop. For you to have strength and rest. Am praying for you to have that supernatural rest beyond what time you actually have your eyes closed, that only the Lord can give.
Blessings!
Prayers for a better tomorrow!
God bless!
This is probably gonna sound really daft, but there is a guy -a lawyer I think - who had a stroke and couldn't move anything except blink, he wrote a whole book by blinking the alphabet to a friend, who then wrote it all down. Have no idea what Tricia can do, how she can move etc, but maybe this will help. I can imagine you have a great sense of humour, so keep it going, laughter is one of the best medicines there is.
Rosie in the UK
I'm sorry about the communication trouble! I'm glad Gwyneth is doing well, whatever it takes to keep her breathing easily.
Praying for you all the way from California. CF is very close to me... my best friend growing up had CF as well as I am a pediatric nurse. I have had the pleasure of taking care of many CF patients. Many prayers for Tricia and your baby Gwyneth. May God continue to heal both of them and give you strength to endure!
Dear Nate,
Praying for you, Tricia and Gwyneth. I have also put your blog address as a comment on Beth Moore's blog livingproofministries.blogspot.com
I have a very interesting story on how I found your blog, but that is not important at this moment. I probably check your website more than 5 times a day a long with your father and brother-in-law. Wow is all I have to say. You have been such an inspiration to me. I am a nurse that works in BMT and I have many feelings about my patients that I work with. Recently I have questioned God because of some of my patients. I spoke with one of my good friends who loves the Lord and I have known for many years. She has helped me with many thoughts I have had regarding the Lord. But your story has really made me think and come back to the Lord. I thank you and Tricia for that. I watch many family members go through hope, faith, sorrow and happiness. What amazes me the most is that they always thank us. I really have no idea why but they always do. I wish you and your family healing at this time. I pray that they both are able to come of the vents soon. Especially Tricia so she can see her beautiful baby girl in person. Love in Christ.
thank you so much for sharing your life with me. thank you and your family so much for being light in a dark world. your faith inspires me to do do good. because of your blogs , i have came to know something very important, god's will is just that,we can try to fight it but it becomes a battle we may never win. god amazes me by using people like you and your family to show us this. one day , i only pray that my faith will be as strong as yours. again thank you and tricia for sharing with the world your lives, you are angels here on earth. you are in my prayers.
bless Tricia's heart! Poor Woman! Praying for Tricia and you to find a way to communicate! Still praying for sweet little Gwyn Girl!!
Praying for you all
God bless and love you
Melissa
xxx
I am still praying for your family. God bless you all.
-Bobbi
note to self:
start a really boring blog that Nathan can read, when he might be having trouble sleeping.
either that, or offer to pray with him on the phone and share some scripture.
decisions, decisions : )
You guys have been in my prayers today, eventhough I've had a full day with work and a broken water heater at home. I'm praying for your strength to hold through all this. I'm glad some family has arrived both for Tricia and for your comfort. "Father, our strength is so limited and yours so vast, please infuse Nate with your grace and strength. Sounds like he had a short night of rest. I ask today be a better day for Tricia, Gwyneth and Nate. Amen"
May you find the strength you need and may tomorrow be a better day for all involved.
I just wanted you to know that you said previously "if you all love Tricia so much I cant wait to see when she wakes up", yes we all cant wait to see when she wakes up too and look forward to her posting on the forums again however............
I wanted you to know its not only Trisha's story we are so enamored with, it is you, your strength, your committment, your love for your girls, and your desire to bring us all along and help us improve our lives & find our faith along the way. Everyone is in love with you AND Trisha.
So take care and hang in there!
So I must be "subconsciously" waking up when you post blogs. I woke up twice last night (once about 1:45 and once about 4:15). Both times I said a prayer for Tricia and Gwyneth.
Nathan, I have learned over time that if I waken during the night and can't get back to sleep, it is usually because there is someone that God brings to mind that I need to be praying for. Tonight was your turn :) Even now, I am praying that all three of you have been able to fall into a deep and restful sleep that will serve well to strengthen you for the coming day.
Another variation on the white board/point/blink routine that I would sometime resort to using with my patients and their families (and you may have already tried this!) would be for you to literally speak your way through the alphabet slowly, and have Tricia blink, or whatever gesture works best for her, when you hit the next letter in the word. It is a tedious process, and requires her ability to be able to focus long enough to accomplish it..but has helped "save the day" when all else has failed, in my experience.
Father God, I pray right now that your Spirit will so permeate the areas around Tricia and Gwyneth's beds, that the entire parade of people who come there, whatever their purpose, throughout this day will stand in awe of Your presence and power. I thank you for Nathan's constant witness and his ability to touch so many lives and minister to so many. But today, Lord, please send specific unexpected people to minister to him in Your name and with your love. In Jesus name, amen.
am praying for a day of sweet peace for the 3 of you... Love you!
anita
Nate, I can feel your exhaustion in your writing.I'm praying for God to give you some good,revitalizing,rest.You remind of Claire and the way she is and has always been when I've been in the hospital.But you have to rest! I know the comfort and peace you bring to Tricia by being there for her.I also know she can sense how tired you are and knowing how much she loves you she'll worry about you even in the condition she is in.Man, doesn't it just rock your world to have that kind of love in your life? I know it does mine.A wife like we have is truly the second most precious gift our God will ever give us.Thankyou for your prayers and my family and I will continue to lift you and your family up to our Lord in ours.Your brother in Christ, Tommy
So sorry today was a tough one...I guess I should say yesturday. Praying that today will be a much better one all around and that you will be able to get some much needed rest.
I've been reading your entries for the past week or more after someone mentioned it on a forum I read. I just want to say that I am faithfully praying for you and your beautiful family! I pray that God continues to work miracles in your family. I pray that Tricia and Gwyneth amaze the doctors and nurses at the hospital and that they would see God's glory throughout everything. I am praying for God's peace, love, mercy and healing to be on Tricia and Gwyneth. I am praying for comfort and peace for you during this difficult time. God is always faithful and nothing is impossible with Him. I will continue to read and pray and I send lots of love to you and your family!
In Him,
Steph G.
Suddenly I was reminded that we need to be alert for the enemy prowling around. Let's pray for the whole armor to be a help here-
LORD, protect Nathan from the arrows of the enemy, give him your peace. Have him always remember he is a soldier, this is a battle. Go before him LORD, strengthen him, give him your perspective. Allow Tricia to communicate what is important, help her feel peace, and not fear. Have her cling to you, Father. Give the staff supernatural wisdom, and grace.
You are good, be merciful to us.
Amen
We will be praying that today is a MUCH better day for Tricia and Baby Gwyneth. And pray that God's peace will rest on Tricia today and in and through you, Nate. Praying for little Gwyneth's lungs to strengthen and her body to become stronger. You are amazing, Nate! And our Gracious God is even more so - it is obvious through your lives! Our prayers are with you!
My prayers are with you again. Am sure it is frustrating for Tricia, I'm sure she has so much to say to you, including I love you. Has she been able to sign it? Stay strong. I love you.
You're such a breath of fresh air.....even when you're exhausted,frustrated, stressed and sad!. Your transparancy through all these hurdles is appreciated.
I pray you get some rest and I'm also still praying for your girls!.
If you need anything from Florida besides prayers please let me know!. I wish I was closer I would love to give you a hug!.
Love in Christ,
Melody
i know you have heard many, many suggestions but i feel like i have to put this out there. if you know of any deaf in the area who have an oral background they could help you communicate. I know a few on the Outer Banks but none in the triangle area..many people read this blog and may know of someone in the area who could help.also if she know the manuel alphabet and has the strength. it seems to me rachel played the part of helen keller in the shchool play and i remember being impressed that she was using the real signs and not faking it. anyway...I continue to pray. i hope you can get some rest today.
Hi, I have been following your blog for about two weeks, I came here through Tricia's sister's blog... the minivan one!
I am a pediatric physical therapist, so I know what the path is like with Gwyneth.
A few things come to mind about communication:
-make a board (maybe two sided) with alphabet, question mark, simple things like pain, need, want, any other things that would communicate a concept that she can point to and then get more specific with spelling. You can also improve the "scanning" idea that someone else mentioned. Rather than point to each individual letter.. have things arranged in rows, point down the rows. she blinks at the row she wants... then you scan across. If she is moving her head, you can try a laser pointer mounted to glasses (the frames can be empty, they are to hold the pointer steady) and she can use head to point to things.
This is a bit complex to explain all here in a comment. Get a speech therapy consult TODAY!! you want someone with augmentative communication skills. There are a lot of low tech ideas/methods out there. Good luck, I am praying for you.
Nathan,
What if you printed up some "flash cards" of the main topics Tricia is likely to want to talk about (ie Gwyneth, you, her family, her friends, various needs) and held those up so she could nod or blink until you hold the correct one. Then you can at least narrow the field when she's trying to communicate. I'll keep praying for you all.
Much Love & God Bless~
Lizze
Make those flashcards with photos/pictures so she doesn't have to read so much. Maybe even mounted on a board.
Nate- Wanted to let you know that we will be praying for you on the way to school this morning. I have about a 15 minute drive to school. My kids and I usually listen to our Christian radio station, but today we are going to pray. We will be praying that God gives Tricia a better day and that she will be able to communicate with you. Also praying for Gwyneth that she will continue to grow. Love The Hagers in Michigan
Nate,
I just prayed for you guys, for less frustration for both you and Tricia on communication. I had a neighbor in Lamont that had ALS and he lost his ability to speak. His wife made a sheet with the alphabet on it and at the bottom some common phrases, "I want..."; "I need ..." etc. He would then point to the phrase or spell what he was wanting to say by pointing to the sheet. Don't know if Tricia is alert enough or strong enough yet to do this?
I'm sure the nurses must have a rough time dealing with taking care of Rose and the other tiny babies. It would be hard for me to know I would have to put a baby through another procedure.
We are shooting to be there around 6ish Friday night.
Love you guys! Get some rest.
Gwenyth's Great Uncle Andy
PS. I imagine its hard to keep a Jersey girl quiet. :)
Nate,
I just prayed for you guys, for less frustration for both you and Tricia on communication. I had a neighbor in Lamont that had ALS and he lost his ability to speak. His wife made a sheet with the alphabet on it and at the bottom some common phrases, "I want..."; "I need ..." etc. He would then point to the phrase or spell what he was wanting to say by pointing to the sheet. Don't know if Tricia is alert enough or strong enough yet to do this?
I'm sure the nurses must have a rough time dealing with taking care of Rose and the other tiny babies. It would be hard for me to know I would have to put a baby through another procedure.
We are shooting to be there around 6ish Friday night.
Love you guys! Get some rest.
Gwenyth's Great Uncle Andy
PS. I imagine its hard to keep a Jersey girl quiet. :)
Hello Nate. My name is Renee, I live in Indiana. I was turned pointed to this blog through a Christian group I belong to on Etsy.com. Since I clicked the link to come here (last night) I've read all of the January posts and must admit I stayed up a little late doing so but here I am first thing this morning checking on you guys. I so admire the strength and courage of all of you! Each person in your story is an inspiration. Thank you for sharing your life, I'm praying hard for you and your family.
On a side note, if you've not found that White Rose photo album yet Etsy.com is the place to look. It's a full of hand-made items and there are some very talented people there. http://www.etsy.com
I hope and pray that today is a better day for you all.
Prayerfully yours,
Renee
Praying for a better day today for you both. Praying that the vent will be able to be removed soon, and for strength to return to Tricia so the plans for the transplant can begin. Can't think of a short term communication solution, so let's just pray her to get the vent removed. I'm thankful they have been able to clean her lungs out so well. Seems like that will be a big deal. Also praying for Gwyneth to be able to begin feeding tube soon, so she can start growing and get "up to 2 lbs! Please remember that thousands continue to hold you up in prayer Nate. Constantly. Our God is able to sustain you. We love you guys! We'll be up to see you soon.
What an awesome God we have - to bring so many people (many of whom have never met you & your family) together to lift your needs in prayer! God is using you as a tool in His great works right now. My continued prayers for your health & rest, as well as healing for Tricia & Gwyneth.
Hi Nathan-
Will keep praying for all of you - especially that God moves in a powerful way to get Tricia breathing 100% on her own. How awesoem to witness how God is carrying you through.
With the difficulty in communication, have you considered trying simple sign language? The thought occurred to me based on your previous post about you and Tricia signing "I love you" to one another. Perhaps she would be able to do some simple signs?
God's peace,
Andrea
I can hear your frustration and wish there was something that I could do to help you. I can't (other than pray) but God can, so I will pray all the more!
I look at the time of your comment and you would think that most people wouldn't be up to read it, but I see the times on the comments and people are steadily keeping you covered in prayer round the clock! Isn't that awesome?
I'm sorry that you've had such rough day. And Tricia. And Gwen. I will pray for peace and healing and growth for all concerned. I hope today will be a better one for all of you.
Nate,
I woke up this morning with you 3 on my mind and started praying for you right away. As I was praying I saw a picture in my mind of Gwyneth extubated and breathing fine. I know this is not where you are yet, but I pray that you will be soon. So glad to hear that even though she had to be intubated again that she is stable. I feel so much compassion for you and Tricia right now, not being able to communicate as you long too. I'm praying for you about that. God Bless You,
Angela in central Ohio.
Praying that you have a better day today (Wed.) Hopefully you all were able to get a little rest! Sending a hug to you all! :)
Dear Lawrenson Family,
I have been following your story for a week now. Tiffany from "Until Journeys' End" shared your address with me. Whenever I think of your family the song "Press On" by Selah comes to my mind. Do you know the lyrics? If not, I will share them.
When the valley is deep
When the mountain is steep
When the body is weary
When we stumble and fall
When the choices are hard
When we're battered and scarred
When we've spent our resources
When we've given our all
In Jesus' name, we press on
In Jesus' name, we press on
Dear Lord, with the prize
Clear before our eyes
We find the strength to press on
To press on
I am praying for your family's collective strength-emotional and physical strength for Nate-physical strength for Tricia and Gwenyth. Spiritual strength for your entire family.
HOPEfull in Christ
Carin Vogelzang
www.margaretshopechest.com
The Lord woke me last night to pray for y'all... at 4:27am... I hope all is well... -Mrs. D
Dear Nate, You and your family are more important to all of us than anything outside of the hospital....
May you get some restful sleep to keep you strong .. to carry on this amazing path in your life. Hugs, Baba
Praying for a better today...may you get some needed rest and find a way to communicate with Tricia.
Praying that today goes smoother for you guys!!
We are friends of Meghan and Mark Davis. They asked for prayer in our small group. So now you have another team of prayer warriors. "He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." Isaiah 40:11
Deb
Nate and Tricia,
I wanted to let you know that I am praying for all of you.
Gail
I feel and understand your frustration Nathan. This is Salina from Kitty hawk kites.In 2001 my father was in CICU at Forsythe memorial, another wonderful care facility. He had a ventilator and I felt your same frustration with communication. he too would get frustrated and was going through great emotion. Stay strong...it will get better as she gets stronger and her mind clears some from the sedatives. Thank you for your blog and ALL of us at KHK are praying and staying posted.Gwyneth is beautiful!!
Several people have suggested ways to help Tricia communicate. I have spent time working with vent patients is ICU etc. A board with words spelled out seems to work best for patients who can point. They must be able to see well enough to identify the words. One transplant patient who had to be on the vent for an entended period of time had a family member who made full sheet single word signs which they said worked very well...the words you choose are important and need to be specific:
Pain
Suction
Gwyneth ok?
Pictures
Fear
Scratch
Back
Nose
Leg
Arm
Shoulder
IV
Sick
Stomach
Feet
Time?
Day?
Where
The more common things patients become concerned about it what time of day it is and what day it is and pain. Because of the meds, she will likely not remember the questions she has asked or your answers; that's where the repetition comes from.
There is also a way to talk around the trach. It is a learned skill, but patients do it all the time. It has to do with the cuff that holds the trach in place. There is also a way to talk called belching. She sort of swallows a puff of air and uses it to talk. There is also a "talking trach". It is possible that it is too soon to switch to this trach but you can ask the pulmonary Drs. about this. Lori Morris Hughes is up there. She went in Monday. She has a talking trach. I'm sure you can find her. She can give you plenty of info on communication with a trach. Hope this helps Nate.
dinki@charter.net
www.dukelungs.org
I found your blog through a few other friends' blog links....we are praying for you in Houston!
maybe you could take pictures of several different things. Put them all in a book. Then slowly turn the pages until she points to one of the items. A picture of the baby could spark a conversation of how well she is doing. A picture of the two of you hugging could lead to an embrace that would help both of you out. A picture of the Bible could lead to some favorite passages. A picture of you and your guitar would suggest a song.
Hi Nate,
You've probably thought of this but just in case you haven't ...
Can you play a little bit of "narrow the field" with Tricia to figure out what she wants to talk to you about? Tell her to squeeze your hand if you say the right subject that she needs to talk about. For instance, you can say, Gwyneth, Mom, our home, your status, food, pain, visitors, Meka, drugs, day of the week, prognosis, etc. to give her key words to recognize (kinda like when your doing a google search). That will narrow the field of conversation down and then go again with the key words. It must be so frustrating to lie there and not be able to communicate. Keep us posted when you can. God Bless, Bo
its good tricia's alert, i hope she can talk soon :)
hang in there
my thoughts and prayers are with you, gwyneth, and trica.
Praying for God to ease your frustration and aid you in the ability to read lips...
Praying that God will continue to heal and strengthen both of your two angels...
Praying that God will continue to bless and protect you...
Praying that God will continue to use your story to encourage so many to draw closer to Him...
~ Dana and Wil Haupfear
I have been following your blog since before Tricia was taken to the hospital! What a touching story!!!! My mother was very ill in 2003- in a sedated coma, on a vent with a trach for months! SHe was alert at times and we could not understand a word and she could not write because of her strength... Sounds all too familiar. I can say, things will get better!!!! I feel for you and this has touched my heart and brought back so many memories or when I lived in the hospital (with my 5 month old infant in tow) with my mother and my husband stayed home working full-time and caring for our other two kids. I have tears reading your blog and remembering 2003 for our family! You have so much strength, will and love and that is all you need to get through these times!!!!
I'm sorry that today was a tough day. I am thankful for your faith and knowing that God is with you and Tricia even when there is a communication barrier. I will continue to pray for you both as well as sweet Gwenneth. Bless you all as you go through another day!
my small group in Korea prayed for you guys tonight. i am sorry today was hard.
i'll pray for a much better day today! we love y'all
I overslept this morning, and yet the first place I came is here, (even had the computer booting while I was letting the dogs out) what does that say about the power of your words?
I am sorry that it was such a rough day for you all. I pray that Trisha gains enough strength to be able to communicate her wishes and needs with you better, and I pray that little Gwyneth continues to improve day by day, as I don't see her steps today as going backwards, I see them as building blocks for the days to come. Bless your grandma for taking care of Ralphie for you all, he is a cutie pie.
And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.
2 Corinthians 1:7
I'm truly sorry that you three had such a hard night. Praying that our mighty Savior wraps His loving arms around you three and gives you all the comfort and peace that you need to rest and heal. Praying for your emotional strength, as well as Tricia's physical strength.
"He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall... but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Isaiah 40:11, 29-31
Precious Lord,
I ask you to hold Nathan, Tricia, and tiny Gwyneth in your arms today, just as you have promised you will. I pray the warm and safety that comes from dwelling in your mighty arms will be the strongest sensation they experience today. I ask you to continue to whisper great plans in little Gwyneth's ear, even and especially when no one else can begin to fathom what lies ahead. I pray a calm will fill Tricia's heart and life today, as she realizes more and more the miracles that have taken place during her slumber. Give her your grace to dance on this horrendous waves. God, you are our all in all. You knew all of this before it came to be. We have not the strength, as mere children, to do your work. But we are willing to be filled with your power, that we might overcome and bring your glory. Fill each of the Lawrenson Three with your power, your grace, your glory, and your peace today, that the world might see you in the flesh of a man, a woman, and a child today. You are able to do all things and, through you, this precious family will not stumble or fall, they will not grow weary or faint, they will soar on eagle's wings. We praise you, Father. And we give thanks for your baby boy, who made all this possible. We ask all these things in His name, not ours. We love you, Lord, and we look with hope toward what you have in store for all of us.
Amen
Your blog site was brought to my attention yesterday, by a friend. She told me a little about your situation, and how inspirering you and your family are, and how she just can't quit reading.
So I decided to check out what she was talking about. Let me just say how amazing God is. You and your family are amazing. I am 9 months pregnant... due in about 2 weeks, and I have to tell you that through you, God has showed me just how truelly blessed I am, and what true faith in Him is.
Your blogs hit me so hard, I couldn't get you and your wife and daughter out of my mind last night.
I have a beautiful little girl who will be two in February, and anyday now, we are expecting a little boy. Reading your story and seeing your amazing faith, and your praise to God even in your trials, shows me what it really means to serve God. You are a true inspiration. I pray that if I ever go through even the slightest of trial in my life, I can keep and display the same faith that you and Tricia and your families have.
I pray that God give you both peace of mind. I ask he give all of you strength to keep going, Tricia and the baby strength to keep fighting.
You are an amazing man of God. You are in my families prayers. I have sent your blog address and some of your story to people that I know believe in, and love the Lord. Thank you for your obedience.
Praying for you guys today and telling lots of people your story so God may be glorified.
Mary
Nate,
Our prayers continue on behalf of Tricia and your sweet baby. We also are saying a prayer that you will continue to have strength and peace during this most difficult time.
Nate,
I found this site a few days ago and have added your site to my blog.
http://iscrap4love.blogspot.com/2008/01/what-is-really-important.html
Today I shared your story with my readers. They aren't alot but I believe every prayer helps.
God Bless you and your family. Thank you for sharing your story.
I was putting our daughter to bed last night and as usual thought of your family. In my daughters room hangs a poem that years ago hung in mine. I thought you might enjoy it.
Why God Made Little Girls.
God made the world with its towering trees
Majestic mountains and restless seas
Then paused and said, "It needs one more thing...
Someone to laugh and dance and sing
To walk in the woods and gather flowers
To commune with nature in quiet hours."
So God made little girls
With laughing eyes and bouncing curls
With joyful hearts and infectious smiles
Enchanting ways and feminine wiles,
And when He'd completed the task He'd
begun
He was pleased and proud of the job
He'd done,
For the world, when seen through a little
girl's eyes
Greatly resembles Paradise.
Author Unknown.
It always makes me smile when I read it and thought with the two girls in your life it might for you too. I pray for you and your family often.
Sarah Fowler
Nathan,
After having been sedated for five days, I remember waking up and trying to figure out what had gone on. I distinctly remember the TWO MOST FRUSTRATING THINGS I'VE EVER EXPERIENCED were not being able to communicate/make myself understood and trying to breathe and feeling like I couldn't because of the vent. We tried every method possible to communicate - sign language - dry erase - my sisters going through the whole alphabet for me to pick the letter I needed. Nothing worked. I knew exactly what I wanted to say, but I couldn't even figure out which letters to use. I'm praying extra hard for Tricia as she wakes up. Only time will help, I'm afraid. Thankfully, we know that God is the Author and Creator and the One in charge of time. Blessings to your family.
HI,
I have written a few times before. I check your blog several times a day and I pray for Trisha, your little Gwynneth and you. I know what a trying time this must be, but God is ever so faithful and has this all in His hands. We will just keep praying!
Blessings,
Gina ( Wisconsin)
Isaiah 55:8-11
8.For my thoughts are not your thoughts, neither are my ways your ways," declares the Lord. 9."As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. 10 As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, 11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
Nathan, I believe there is so much purpose in this time that God has you and Tricia walking through. Time and again I read scripture that encourages me to believe that nothing, not even this, is not part of His perfect plan and time and time again I am reminded that He walks before us to prepare us for the victory. Some of my favorites verses all come from Deuteronomy: If anyone cares to send some time in the Word, you can look these up...
1:29-31
4:7
4:29-31
7:6
7:9
20:4
Praying for you guys!
Praying that today will be a better day and that both your girls gain some strength.
What a tough day (big hugs!)
I am continually stopping to pray for your girls and will continue to do so ...I just stand amazed this last week at the way Tricia, Gwyneth and you have been on my heart. I don't get a lot of time to spend in prayer (I have 5 small children) and mostly pray *on the go* Yet this past week God has given me times to just sit and pray. Wow. What a gift. To be able to pray for you three has been such a blessing to me and God is hearing and moving through your lives. Praise to Him!
Praying for you today Nate, today is a new gift and God will give you all you need to for today.
Praying...
Nate, I am praying with confidence that today will be a less frustrating day for all of you. Sending you love and prayers from Nashville! Your girls are high on my prayer list.
Your present circumstances bring to mind,the time I spent with one of my children after surgery. In my heart, I needed to be there every minute, but constantly sensing her anguish at not being able to communicate was so difficult to endure. I pray that God will give you strength and patience as you work through this phase of Tricia's recovery. Take breaks, even if only to "the hole." Never let thoughts of inadequacy or guilt slip in. God knows you're doing your best and so all of us who love you.
Hi Nate & Tricia,
I stumbled across your blog and am so glad I did. There is CF (and cepacia, unfortunately) in my family and what a cruel disease it is. We serve a good God though, and I've seen His hand every step of the way.
My prayers are with all of you!
Cindy
Isaiah 43:1-2
I'm so sorry it was a rough day/night. I'm praying right now for a better, smoother, peaceful day for all of you.
Nathan,
Your story has made it all the way to Japan! I was just informed of your family and your blog and I will be keeping each of you in my prayers.
I did want to make a suggestion on the communication issue that you are having. My Dad was a Quadriplegic who spent his last 2 months on a vent. Since he was paralized and could not use his hands to write, we devised a system for him to communicate. He would say "yes" by raising his eyebrows (like he was surprised) and "no" by scowling (like he was mad). When he wanted to tell us something I would start with the letter "A" and go through the alphabet until he indicated that I had reached the appropriate letter. With this method, he could spell out a word or two & get us on the right track so that we could figure out what he wanted/needed. It wasn't the fastest way to communicate, but it definitely got the job done! It wasn't until after his death that it dawned on me that I should have put a piece of paper on the ceiling above his bed with morse code. He could have blinked the letters much faster!
May God bless both of your girls,
Sheila
With my wife the dry erase was a huge frustration too... try a "sign' board like they use for stroke patients...get with the rehab department to get one.
It has words and pictures to help her communicate with you while on the respirator. It really help us communicate...
Praying for a better day, and that the Lord can help with the communication!!!
Big hugs to the three of you!
Beginning my morning in prayer for you and your weary heart, that it may
have peace in facing all that happens in this new day. In all I have learned about Tricia from you here, I
will pray special that her need to communicate all that is in her heart will be fulfilled soon. I can only imagine how desperate it feels to her. Praying that she and Gwenyth can be together soon as it would be so healing for both of them. Thank you for the update on Ralphie, he is in good hands!! Love and Hugs to you Nate and prayers are flowing here for you all.
Love, Laurie in Ca.
Try the blink method of communicating. You ask her simple yes/no questions and she blinks once for yes, twice for no.
For spelling out words, we found it helped to just say "blink when I get to the letter" and then start reciting the alphabet.
Hope today is better.
Nathan, Tricia, Gwyneth,
Lauren and I are continuing to pray for you guys. Your faith has been such an inspiration to us and our families. We will continue to pray for Lord's strength and grace in your lives.
Hi Nate! I am praying that today will be a much better day for you, your wife and your sweet baby girl. I came across these preemie stories...
http://www.dailymail.co.uk/pages/live/articles/news/worldnews.html?in_article_id=484264&in_page_id=1811
http://www.cbsnews.com/stories/2005/02/08/health/main672488.shtml
I am praying for you and your family that today you will feel the love and strength of God surrounding each of you. That he will give Tricia the peace that passes all understanding. Hugs to each of you. k
On that day they will say to Jerusalem, "Do not fear, O Zion; do not let your hands hang limp. The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."
Zep 3:16-17
Don't be discouraged. There will be tough days ahead. The Lord your God is with you and is mighty to save. We're still praying in Atlanta!
Praying for your sweet family today.
I'm a speech pathologist...ask for a speech consult. There are many ways low tech augmentative communication devices out there that can be useful.
I'm sorry today was tough. I can only imagine the frustration of not being able to communicate as well as you'd like. I'm praying so hard for strength for Tricia. What's her status transplant-wise? Is she back on the list? Has the transplant team been by or said anything?
I'm glad you're at peace with Gwyneth being intubated again. I know that's hard to see, but I understand what has to be done to keep her well and strong. I'm praying everything continues to go well with her.
I love the picture of Meka and Ralphie. I prayed for them both this morning too. Ralphie reminds me of my sweet Leo. He passed away in November and would've been 14 next month. We had just adopted a sweet Jack Russell mix we named Lucy a couple weeks before he passed away. I often hope that they'd have had a relationship like Meka and Ralphie's. :)
Love & Hugs to you, Tricia, & Baby Gwyneth!
Praying for you all!
I have been led to your blog through others and wanted you to know that I am praying in Franklin, TN for you and your beautiful wife and daughter! I am praying for healing!
We praise the Lord for Nate's perseverance and the strength that Tricia and Gwyneth are exhibiting. Praying Isaiah 40:28-31 for all three of you, your medical team, & extended family today.
The Midkiffs - Boone, NC
oh - how soon before they will be able to take her off the vent?? I will continue to pray for her and we will also pray for her at my bible study meeting tonight.... from everything I "know" about you on this site - I am sure you being there with Tricia is a HUGE calming effect - continue to just be there for her..... will check back later.... Danielle
Nate,
I learned of your story from Danny and Suzy Plyler. Following your story daily, I have begun to wait for updates on Tricia, Gwenyth and you. You are in my daily thoughts and prayers as with others here in Statesville as I share your journey with them.
I am a registered nurse (parish nurse) for my church and have encountered issues wth communication where vents are concerned. It can be frustrating. One temporary solution may be a letter board and a common word board. I don't know if she is able to raise her hand (even a little) or focus enough, but it may be worth a shot. You place the board in front of her and she points to the word or letter. You can also go through the words-saying them aloud until you get to the one she wants to say--have a sgn for yes or no. (one blink for yes, two for no type thing)
I would suggest words like pain, areas of the body (ie back, back, head, etc), emotions (love, sad, scared) and words that are important for you both. It may not sound like much, but it can take ease her feelings of helplessness a bit, perhaps. When I made one of these for my parishioner, I printed two words per page, cut them out and taped onto a small poster board. It can be tiring, flipping through for every thought, but it may help communication a bit. Hope this helps. If you have any questions about this "concoction", please call or email me. I pray for God's grace and love to continue blessing you.
Andra Williams
(704)528-7150
swee67@bellsouth.net
Andra
I have been reading your blog for the last week and I have been praying for you, Tricia, and Gwyneth. I was send a link from some friends and I am so glad to be able to pray with you on this journey
As a ICU nurse, I know how frustrating it can be when you can't communicate with your patient or family member. One thing you might see if they(speech therapy/nurses) can find is a picture board/letter board. Usually they have a bunch of pictures on one side and letters on the other. Usually these are found in neuroICU where people have had injuries to their brain & spinal cord, I used to work in one of those and we usually had lots of them and they worked well. But it might be worth a try because it is usually easier on the patient to just point or you can point and she can nod yes or no, or give a thumbs up or down to indicate if you are on the right tract. Sometimes these boards are easier than writing as least that is what I found when I use to work.
I know it can be really frustrating and I am praying for you everyday, something I have not done in a while. I hope today your girls continue to heal and gain strength today and everyday and I will continue to keep you all and everyone there in my thoughts and prayers. Claire
Praying and praying for your girls!! I'm a mom of 3 kiddo's and my heart goes out to you and your family.
Try asking the nurse/dr. for a GAZE BOARD. This is what they use with patients who need to communicate but can't speak just yet. This only requires tricia's eyes :)
Hang in there, Nate...
and isn't it cool that you're able to use the music that God has given you in this way?
Nate, Tess in Hong Kong posted about your amazing family. Know that the Grangers in PA are praying for all of you!!!! Your daugheter is beautiful thanks for sharing pictures!
Love Lynsey Granger
Prayers from our family to yours. I just found your blog from a friends' care pages site. Our daughters both have Down syndrome and leukemia so we tooa re familiar with the hospital scene. Stay strong!
www.cbranam.blogspot.com
I have been following your blog and praying for your family. Your story is amazing and is touching hundreds and most likely thousands of people. I will continue to pray here in Cleveland, OH.
Melissa
web.mac.com/thecurtises
Nathan
Keeping you and Tricia and Gwynth in my prayers....
I don't know if either of you know just the letters of sign language. When I was on the vent that was my first instinct was to sign spell words to my husband. Believe me neither of us know them well but he could understand what I needed. Good luck. I know this must be so hard for all of you.
Nathan,
I understand your frustration re reading lips. My mother was on a vent for many years and learned how to talk. Hint: if the medical staff could let just a little air out of the cuff--then Tricia may be able to speak. PS, don't tell Tricia this because if she still can't talk she may just get even more upset.
We are praying for you everyday:-)
David
I learned of your blog from a micropreemie parent group and I check every day for updates - we've been praying for your family. I am absolutely amazed that Gwyneth tried CPAP! My son was born at 23 weeks and spent 6 weeks on the oscillating vent and another month on the conventional vent before being attempted on CPAP. That is incredible and I was so very excited to hear that your little girl is doing that well. Our preemie, Bennett, is two now and he's been admiring pictures of Gwyneth saying, "Ohhh, baby!" Her photos look just like his baby pictures. :)
Praying today is a better day for your girls!
You continue to be an inspiration, even in the middle of the night. Take care of yourself, too, Nate!
Hugs & Prayers from MO.
Coming from a wife, even when it gets really frustrating for both of you, I know it means so much to Tricia just that you are there by her side and trying your best. Praying for peace, patience and health today. Love to each of you.
Having your baby in the NICU is like being on a rollercoaster. One day your emotions are up because everything is going very well and the next day you are down cuz there has been a set back. I pray you have way more up days, than down days.
I pray Tricia comes off the vent very soon. I pray you both are able to communicate with eachother very soon.
BTW I love your pug, she is adorable. We have a pug too, her name is Laci Lou.
Fran
God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God
came across this song and thought of u guys. He has done all this for a reason Praying for you continually hope today is a better day all my love
x
Nate,Tricia,& Gwyneth,
I think you have a beautiful,loving family. It bought me to tears when I read your blogs. I hope and pray that Tricia & Gwyneth improve super fast and get to be together soon. I look forward to reading your blog and watching your sweet baby grow. you are in my prayers.
Carmen
Still praying for you three in N. Richland Hills, TX...
Still praying for you guys here in MO. I am so encouraged by your faith in God and your love for your girls. I can only hope someday to find a fellow that loves God and me as much as you love Him and Tricia (and little Gwyneth!)
Here's praying for a better day for all of you!
P.S. - I love the photos/video of Ralphie. He looks just like my childhood companion, Anthony!!
I'll be praying that Tricia is able to come off of the vent soon so that you two can communicate better. That would be so frustrating, as I'm sure she has so many questions for you. And I'm also glad to hear that they re-intubated Gwyneth. C-pap tends to be a lot of hard work for them. Although being extubated is GREAT, maybe if she gets another few days or a week under her belt, she'll be able to take that c-pap like a champ.
Hang in there! We're praying for you!
Praying for good progress today for both Tricia and Gwyneth!
"" A View From The
Outside Looking In ""
I would like to leave a few wwrds just for you this time Nathan,
Please know in your heart it is also you who are affecting so MANY AROUND the WORLD...what a POWERFUL example of a Loving Man, Husband & Father YOU ARE...
((((the following words are from a post below written by Nicole))))
I strongly agree with her.....
****I wanted you to know its not only Trisha's story we are so enamored with, it is you, your strength, your committment, your love for your girls, and your desire to bring us all along and help us improve our lives & find our faith along the way.
Everyone is in love with you AND Tricia.****(GWYNETH ROSE TOO
OF COURSE !!!!!!
Nathan, I also would like to say, Your pictures are Breath Taking,
a few that really "GOT ME" are,
The picture of Tricia & youself right before she goes in to O.R. ,
The one of sweet Gwyneth Rose reaching and grasping ahold of your finger & the picture where Gwyneth Rose is giving you the universal sign for love,
& the one of Great Grandmother reaching in & Sweet Gwyneth Rose reaching for her finger...WOW ...
TO ME THEY ARE A CLEAR SIGN OF SOMETHING MORE...SOMETHING WORDS COULD NEVER EXPRESS....A DIRECT TOUCH TO THE MIND, HEART & SOUL...
SHOWERING YOU ALL LOVINGLY WITH PRAYERS & xoxoxoxoxoxxoxoxoxxoxo
LONG ISLAND NEW YORK
I received this earlier this morning and I thought of Tricia...
A Newborns conversation with God:
A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be there waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you.
And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I won't see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."
God said, "You will simply call her, Mom."
Always on my mind and in my heart. Praying Tricia is at peace today.
A prayer warrior in Illinois
As I prayed for your family today, this amazing song came to heart. I felt like I should share it with you, but rather than filling your comment space with lyrics, I will include a link. The name of the song is:
Worth It All by Rita Springer.
http://www.lyricstime.com/rita-springer-worth-it-all-lyrics.html
Praying for you all! God is Faithful!
Just checking this today...will add communication to my list of prayers as i go through my day today...how frustrating for Tricia....Continueing to pray for strength, comfort, peace and healing....and that Gods hand and presence would be evident to all who are around you guys...
Hi Nate, I remember the frustration I had trying to mouth to my mother that I wanted my breathing tube out last year while in ICU. Believe me, it's as frustrating for her as it is for you. Speaking from experience. This morning on the way to take Luke to school we prayed for Tricia, You and Gwyny. I'm now at the car dealership getting my oil changed and I couldn't help but log on to their free internet access to get my "confessions" fix. Love you guys and are praying round the clock for you.
My 8 year old daughter and I check you blog several times a day. Since you are running a marathon, and will certainly need God's own peace to continue on. We are praying for a peace that surpasses understanding, a peace that transcends circumstances, setbacks, frustrations and fatigue. You seem to be doing a great job of keeping your eyes on Jesus, with a posture of humility and love for Him.
Praying in Philadelphia for you,
Sharon & Carissa
Praying for you and your girls today! I hope the Lord continues to give you great strength and hope throughout the day and the rest of the week!!
Nate, I started reading your story about a month ago and I check in several times a day to be sure that my prayers for you and Tricia are acurate for the moment. I want you to know that I found out about you through the blog of a family that is going through such tremendous struggles and tragedy themselves, but posted on their blog your story to specifically ask for prayer just for your family, what an impact. I pray for you several times a day and I thank God to see such faith and hope reflected in your lives. I may never meet you this side of heaven, but I feel so involved in your life and have grown to care for your family as if you were my own. Love in Christ Jesus, Beth
Nate,
I am truly touched by your story. My husband and went to churh with Jordan Leino in high school and though out the last year we have been praying for them thru there journey. Patience posted a blog about your family and I began to read. First I want to say that I admire your faith in this situation and your courage, second you will be on my prayer list. I have a special place in my heart for people with CF because one of my good friend had it. He was such a special person and made a huge impact on the people whos lives he touch. I will be praying that the transplant will be able to happen and for your new baby girl.
God Bless
Elisa
eeescobar21@yahoo.com
Hello -- I am guessing that communication help might have to wait a bit because I bet she is so weak and weary that that is part of the issue. Nathan, I imagine you wish you could trade places with her and take the suffering instead. It is so hard to watch a beloved person struggle. Warm thoughts and prayers from the West.
I know by all these comments that I'm not the only one who has visited your blog several times today, concerned and looking forward to the next bit of news.
In the history of me, I've never fallen asleep and awakened thinking of total strangers until now. You know how sometimes you feel like if you yell at the TV hard enough, your team will win? I feel like the more I check and recheck your blog, the sooner everyone will be feeling better.
I wish you all the best, it's clear you have a world of people thinking about you and praying and hoping for health and happiness for all three of you.
All my best.
j
Wow. I saw a link to this blog on the CF Livejournal group. As a CFer I have to admit some of it is hard to read, but I skimmed the blog and realized that I used to be hospital mates with Tricia. My younger sister Karrli and I used to be admitted at the same time as her every so often back in the day when they did not separate CFers from each other. My sister has unfortunately passes a few years ago, but I am trying to stay healthy. The strength you guys have through all of this is inspiring, and I know you have lots of healthy thoughts and prayers on the way constantly.
Best of luck, with everything,
Lyndsay Field
I am the Mommy of a 30 weeker...it is such a roller coaster of a time for you both...hold on to the fact that little Gwyneth is in the best hands (NICU nurses and doctors are angels on earth) and that the days will get better and better! Our little girl Kaitlyn is now 18 months old...and at this moment running down the hall with an Elmo in her hand. Kaitlyn weighed in at 2lbs 3oz at birth and is now 23 lbs. I know that it seems unbelievable that that little soul will be a thriving toddler but she will one day! Prayers to you, your wife and your tiny baby. Check out my blog krinerdiner.blogspot.com and see what your future holds!
Good afternoon Nathan,
I am praying for you and Trisha for a peaceful, uneventful day. I am sure you are a wee bit exhausted, and Trisha too!!
We continue to pray but today we will focus on you. We know Trisha and Gwyenth are covered by the best healer ever, You are also but I feel called to pray for you.
Daddy have a wonderful day and I pray rest, and peace.
I count your family to be a huge blessing!
thank you
beth
Thinking & Praying for you and your family this beautiful Wednesday morning.
I can't say I am sorry enough for the tough day that you guys had. I am pratying for all of you and for Tricia strength and health to come back very soon, also praying that things keep looking up for lil Gwyneth.
Kim
Praying for your girls! God Bless you!
www.caringbridge.org/visit/hayden
I'll be praying for all of you. It must be so hard watching her so frustrated, tired, and hurting. I will pray for her growing strength. I wonder if she would be able to do a couple of signs vs. writing? Bless her heart, I hope she gains strength every day.
Take good care of yourself. I hope today is much better
I am praying for you, your Tricia and your Gwyneth. Your lives are such of a testimony of hope in the midst of such a storm. Even though I believe, I find it amazing that indeed when we are weak then we are strong.
Nate,
My son tried CPAP 3 times before he finally did it all on his own. They told us that was normal for little ones because they have had to learn a lot so early and their nervous system might not be ready to tell them to breathe all on their own just yet. I can't believe they already trialed her on CPAP. She is a little rockstar!!
Still praying for you all here.
Stacy
www.aboutthelarsons.com
Nate,
I know you are not really troubled by Gwyneth being re-intubated, but I just wanted to say (as I think the nurses probably already told you) that often these preemies have to go back on the vent a couple of times before they "fly". (Mine did - was taken off right about the same number of days as Gwyneth, and lasted just about as long as Gwyn did). And just the fact that they tried with Gwyneth at her young age is very, very remarkable. 24-weekers are not often able to come off the vent even nearly this early.
Still praying for (and talking to everyone I know about) you all in Texas.
Its amazing to show of support on little family can have.
Prayers are coming your way from Utah. I am a member of a different faith but i would love to be able to to put your family's name on our Temple Prayer roll. I just need to make sure that is okay with you.
Jenn K.
Nate,
I'm just asking. Your cluster map had a link to this website www.maxgreinerart.com. I clicked on the link and began to read about orbs that show up in pictures taken with digital cameras. Hummm. Not sure what I think. Have there been any orbs in the pictures you have taken? Just asking.
Michele
Hi Nate,
I am sorry that yesterday was tough. Perhaps today will be a bit easier as Tricia continues to wake up and you both learn a new way of communicating for now. Just remember to continue to talk about the past as even things like Gwyneth and the amount of people praying for her will seem foreign right now. Too bad Meka can't get in to see her!
As another note of encouragement, my 20-30's bible study group has added all three of you to their prayer list. i will pass along this new/revised request that the furstrations become less and the channel of communication becomes easier. not only are we praying for tricia and gwyneth, but for your strength during this time as well!
Erinn again in Portland, OR
Hello!!
I have been praying for your wife and daughter!! I pray that they both grow.get stronger everyday..keep the faith! You are an awesome husband and father too!! Grow sweet baby girl grow!
:)
I am a new reader to your blog, but I have been praying for you since I discovered it yesterday. I am a speech therapist so reading today's update touched me greatly, knowing that you are having a hard time communicating with each other. You could talk to a speech pathologist at the hospital to see if they can get you a board with general wants/needs on it (we use them for stroke patients and TBI patients sometimes when they can't talk). Tricia could then just point to the pictures and hopefully communicate more of her wants/needs to you. It would be basic things, but maybe it would ease the burden a bit for both of you. Just an idea, but I felt it was laid on my heart to pass it on. Your blog has really impacted me these past 2 days as I re-examine my heart and faith in light of your situation. God is good all the time, and I hope you can get an extra glimpse of His love today! I'll keep on praying!
Emily (in Ohio)
Perhaps there is someone from the deaf community who could help you read Tricia's lips. I am a public health nurse and a couple of my deaf clients do an amazing job of understanding exactly what I say. I am brand new to your site. Lots of prayers have been said already.
Could she be thirsty? When I was on the vent it dried my mouth out and I would be SO THIRSTY. My husband and nurses were great about swabbing my mouth out with water and mouthwash (the mouthwash, in my drugged state, tasted so good).
But as soon as they stopped my mouth was parched again. It was torturous thirst.
I hope the days that come are better!
I am a former trach'd coma patient myself and i'll tell you a trick that will keep your & her frustration at a minimum since you & the nurses are not lip readers... My family did it with me. Create your own flash cards with quick words that are personal to you two- ie. baby, pain, hot, cold, pray, scared, tired, butt hurting, scratch, rub, itchy. I know you might be laughing at some of these but i swear it's easy communication for you both then you can have her do the blink- which i'm sure u know of- 2 times for yes, 3 times for no. Think of the things she normally would want you to know or tell you and put those on the card with a few creative ones. It eases us to know that when we can't verbalize our needs that you still understand we're lucid and try to help figure them out. I can say before the flash cards life was hectic! Smile. Much love and prayers! I'll even make some for you if you like and i'll e-mail them so you can print them out if it helps! heather ... proofofhisgrace@tampabay.rr.com
I am praying for you a lot today! I have a few suggestions. Maybe a paper with the alphabet written out on it and she could point to them to spell a word out or use ABC magnets on a cookie sheet. She still may not have the strength for this yet but maybe down the road. Keep trying to read lips the more you practice the easier it is! We'll be praying!
Hi,
Perhaps you have heard this already, but I have read your story and I think your amazing. Have you been able to talk to the speech-language pathologist at the hospital? He/She may be able to implement a communicaiton board or book with pictures of her favorite things, phrases etc with pictures, and she wouldn't have to write. I'm sure you get hundreds of suggestions, but thought it was worth a shot. God bless you and your family.
I just wanted to let you know of yet another person that is praying for you! You guys and your situation have been on my mind a lot lately and I just posted a note on my blog for those that read it. The post is "A Request" and our blog is www.stories-of-seven.blogspot.com Thank you for your testimony and that of your wife as well.
Praying for you and the girls every day.
See if you can consult with a speech pathologist (they work right there in the hospital). You might need a referral. Anyway, they would be able to give you suggestions, and potentially supplies, on how to communicate with someone on a vent. I'm surprised they took away her "voice" without giving her another mode of communication.
Nate, a friend of a friend send me your confessions blog. Congratulations on becoming a daddy. What a beauty. My prayers are with both of your girls and you. I work as a teacher and I have seen word/picture cards used with special ed non-communication students. These may be helpful for communicating with Tricia, you could even make your own on 3x5 cards. Best wishes,
Heather
http://hchristine.blogspot.com/
My daughter was born on December 10th, 2007 at 24 weeks gestation also. She was put on CPAP several days ago and was just re-intubated again last night as well. Around midnight. So I know how you are feeling. :( I said that same thing in my blog - I am glad of it because she is happier that way. :)
I will pray for your little Gwenyth. My daughter's name is Emmanuella Grace. If you think of it, please say a prayer for her as well. Maybe one day they will meet each other and be friends. :) I didn't see where you all live, but either way, it could happen. ;) Nothing's impossible with our God.
God bless you and your wife and little baby daughter. My heart goes out to all of you.
~Shannon (and Emma, too!)
I know this may seem odd but I am looking for Lori Morris Hughes. The last time we spoke (online) was Sept 15 2010. I emailed her and didn't hear back. I hope that she's just been busy....
If you are able to do so, please pass the message on that Toni was asking for her. She has my contact info.
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