Gywneth had a small setback today with her feedings, but nothing that shouldn't be resolved in the next 24 hours.
Several awesome things as well:
> She was placed on the CPAP and is doing great.
> Because of the CPAP, I was able to see her full face today (without any tubes or tape) for the very first time. She's even more beautiful than I had thought before...
> I was able to hold her again tonight, and after a rough start with her stats, she did well for about 30 minutes before they placed her back in the incubtor.
> And (this is the best for me), because she no longer has a tube down her throat, I was able to hear her voice for the very first time... Just a few tiny, quiet squeaks, but so amazing...
First, a few thoughts about a few recent comments:
> I have only heard from the professionals that the sweat test is the most reliable for determining if a child has CF. A blood test is needed to help determine the kind of CF. I understand that some of you have heard otherwise, but I can only pass on the info that I'm being given by those we trust the most.
> I think I pretty well outlined what I believe about "spiritual warfare" in This Post.
Thanks for all of the questions...I really appreciate being able to share what we're learning about everything.
> I am putting together some audio of Tricia's voice from video recordings from the past to use in Gwyneth's incubator. Tricia's voice is off and on with the trach, and even when it's there it doesn't sound much like her normal voice.
> We are planning on using sign language with Gwyneth because most infants can learn to communicate long before they can learn to talk. Sign language is one of the ways to accomplish this, and it will help her development overall. You can learn more Here.
> Tricia is not able to journal/blog at this time. She's been spending a few minutes each day trying to catch up with her internet life, but it's coming slow. I can promise you that, when this is all over with, she'll have plenty to say.
> Gwyenth's milk is coming from a local breast milk bank. I've been told that there are only 6 banks like it in the states, and you must be close enough to a bank in order to receive milk.
Finally, I've been asked lots of questions about my photography "skills"...here's what I have to say about that:
I've always loved photography. I got my first really nice Canon when I was a freshman in college. I used to take lots of landscape shots and very few portrait shots...I'll try to post some of my favorites from my past sometime. I lost the time and energy to shoot when we got married. Tricia bought me a Digital Canon Rebel XT this past Christmas. Here are a few things I do know about photography that have helped me that past several weeks:
> Go digital and take lots of pictures...I'm lucky if 1 out of every 3 pictures is one I really like.
> Disposable cameras can take amazing pictures.
> Composition is everything. If you're taking a picture of a person, fill the picture with that person and not with other stuff (see the first picture below). If you're taking a picture for perspective, fill the picture with the things you need to achieve that perspective (see the second picture below).
> Lighting is everything. A tip for you future NICU families...the UV light for jaundice takes AMAZING pictures with GREAT details. Fortunately, Gwyneth only needed the UV for about 7 days, but I am thankful that I took advantage of it (see pic below).
> Use lots of crooked angles. Pictures that totally square can get really boring...taking a picture at an angle can add a lot of visual appeal (see pic below).
> Take pictures of the things you love. If my pictures of Gwyneth and Tricia are any good, it's only because I'm in love.Thanks!
Nate
(I was up all night and posted several times, so read below)
yeah for sleep! Keep sleeping girl and get some much needed rest.
ReplyDeleteHi Nate, just letting you know I am still thinking of you all and praying for you.
ReplyDeleteYou mentioned somehting about Tricia's voice - or lack of it. Maybe you could ask the doctor if a PASSY-MUIR SPEAKING VALVE would be any good. They are used with a trach to enable speech and can be used with and without a vent - and the increased PEEP might help Tricia. If you type Passy-Muir into google you will see what I mean. Hope that helped.
Nate, I very much enjoy your photos. :)
ReplyDeleteGlad to hear Tricia is getting some sleep.
Oh, and good news about Gwyneth being on the CPAP, et al. I hope the feeding issue is easily resolved.
ReplyDeleteI found you through Michelle at My Semblance of sanity. I love the way you write and how easily you explain everything for those who aren't in your part of the world. You are amazing to go through everything you are going through while keeping your wits about you. Sending you hugs and lots of prayers.
ReplyDeletePS Thanks for the photo tips too!
seeing you hold your tiny baby shows what He is capable of - what an amazing moment. I continue to pray for peace, rest and weight gain
ReplyDeleteFirst off I am thrilled to hear about Gwyneth being on CPAP! That right there is an answered prayer.
ReplyDeleteWe were told the same thing about the CF blood test which my daughter had at 4mos/her duedate. I think they said it detected something like 80% of the most common mutations but that a sweat test is necessary for a definite answer (five failed tests for us so far).
I am so glad she's able to get breast milk from a milk bank. I have both donated and received milk and it's a blessing to be able to share that gift with others.
you can see the love in those pictues of your girls!!!!!!!
ReplyDeletejust wanted to say that being a cf'er and having had my husband have screenign for cf adn find out he was *NOT* a carrier we later found out that the typical screening for a father tests for 35 mutations, sometimes 50. As you probably know there are over 1500 detectable mutations that cause CF, they say the small panel covers 99% cases but this is proving to no longer be true.
ReplyDeleteAfter having our daughter we had her gene sequenced (you can due this trhough ambry genetics or quest) through ambry genetics where they test for every possible mutation. Even a sweat test does not pick up all CF. The blood test is something they could do now, I am unsure why they wouldnt. Please, dont take my word for it, just inquire as to what I am mentioning.
The test they did on Gwyneth already is a good start, the fact that her level was low (negative) is a great but being one of the minority that they cant pick up with that test or a sweat test I know it is very imorto exert due dilligence in this area.
I am glad that things are still going well and Tricia is getting some good sleep. Thanks for the photography tips, they are quite use for those of that like photography but don't much about it. Your pictures are great!!
ReplyDeleteI haven't posted a comment yet, but I've been addicted to your story for weeks. The harrowing journey you are on fascinates me with the love and emotion and strength to stay on track. The pics of your girls are amazing...they are just gorgeous. We are praying with you and sending love. Thanks for letting us follow along and pray with you for great things to happen.
ReplyDeleteI read all your post and all I can say is you guys are strong and survivors. I hope things continue to go well with the occasional setback( which is the norm of live in general). And I to love your pics, they are wonderful and full of love, your girls are lucky to have you. Prayers and hugs.
ReplyDeleteNate,
ReplyDeleteThank you for letting the world into your family during this time.
I wanted to tell you that I signed with my son, who is now 3. I used the book below and by the time he was 1, my son knew over 70 signs. Just wanted to pass it along:
http://www.amazon.com/Teach-Your-Baby-Sign-Illustrated/dp/1592332730/ref=pd_bbs_sr_4?ie=UTF8&s=books&qid=1202053838&sr=8-4
I was so excited to hear that Gwyneth is now in an isolet and on CPAP!! Congrats to her! Also, as many negative comments as you might hear about using a milk bank, you are blessed! We are not close enough to one and I cried forever about not being able to "feed" my baby. Just imagine how many wonderful antibodies your precious little one is getting thanks to the love of nature and total stgrangers. Amazing!
ReplyDeleteM, L, M & W
We're using baby sign too! :-)
ReplyDeletePraying, praying, praying!
Thank you again for the continued updates! Priase the Lord that He is giving Tricia rest!
ReplyDeleteI was going to email you the following link but my computer won't let me get to your email address... not sure what technology your church has on Sunday mornings but we do a live stream at 9:15 & 11 (in addition to sermons online from previous weeks) in case, in all your free time (wink), you are looking for some "church"... http://www.grpc.org/sermons/
Yeah for the cpap!
ReplyDeleteI was curious about your photography knowledge, thank you for posting. I, too, am an amateur and LOVE LOVE digital!
You are so patient with your explanations for sometimes the obvious, I admire that. You have so much going on physically and emotionally, I can only hope that it is theraputic to help others to understand and it's not too much a burden.
My heart hurts for Tricia and Gwyneth's separation, but as a mother of four, I understand the peace of knowing you're doing what is best for your baby (and in this case, mom too!)
I hope that this week brings new miracles and good health for your girls. I think about your family so often throughout the day. You have opened my eyes to so many new things and changed me in a way I didn't know one could. Judging by others' comments I am not the only one. You should do a post requesting those that their lives have been changed by your story leave a comment below just as you did for blog links. I think you'd be amazed at the impact you've had on so many around the world.
Thank you for your dedication to updating all of us strangers. You are stronger than you think you are. Keep believing what you write - it's life changing! When everyone is healthy, I would love for you to come visit us in Ohio, free room and board! I'll bet others would offer the same and you could see the world!
May God give each of you the individual strength you need to weather this storm.
Wow, and photography tips to boot! Nice:)
ReplyDeleteI finally added you guys as a link on my blogroll!
ReplyDeleteOh, and great post:)
I love that picture of Tricia. Thanks for sharing.
ReplyDeleteyay for sleep and family!
**Nate** I am following everything, check your blog at least twice a day. I'm not commenting much but that doesn't mean I'm not with you and your girls every step of the way, in prayer, and in rejoicing. Thank you for all you share with us, it's an honor.
ReplyDelete{You're a good writer; and for being an young person, you have excellent insight into life and a respectable walk with Jesus.}
Love and hugs to all three of you,
Your new friend,
Sharon in New Mexico
WTG baby getting off the vent! How amazing for you to see her beautiful face and hear her little squeaks. Big steps!
ReplyDeleteI myself just got a digital SLR camera (although the competitor to yours, the Nikon D40) and it's the way to go!
We sign to our babies as well. It's great to be able to communicate with them before they cna verbally communicate. Be prepared, kids who sign speak later, but they often have vocabularies well beyond their peers by kindergarten. She's going to be telling you how it is in no time!
Much love and God Bless
Kat
I am glad that things are going well at this time. I can't follow every day but do check in from time to time. I thought I'd pass along a blog site that you and Tricia might enjoy. It's a simple blog with beautiful pictures. It shows two young men's travels across the US last summer. Chris and Brian are local Outer Bankers in their 20's. I just thought since Tricia can't leave the hospital you all might get to "travel" through this blog. I'm passing along your blog site to them also. Maybe your story will inspire them.
ReplyDeleteIt's on his myspace.com page. Just
paste and click.
http://blog.myspace.com/index.cfm
?fuseaction=blog.listAll&friendID=
96518550&startID=289689732&
StartPostedDate=2007-07-19%2017:
53:00&next=1&page=1&Mytoken=47496E9C
-B394-4FD9-835EF068B1B57B2B26587935
Still praying....
ReplyDeleteMary
Florida
Good posts to come home from church and read today! Thanks for more explanation of why Tricia can't hold Gwyenth, and it's good that you are following doctor's recommendations for both of them! I liked your tips for photo taking, too - although your "stats" on getting a good picture that you really like are WAY better than mine - I'm lucky if 1 in 10 come out how I like them!! I think it helps that you have a pretty SWEET camera as well - a cool camera is always more fun to take pictures with.
ReplyDeleteStill keeping you all in my prayers (thanks for continuing to mention fairly specific stuff to pray about), and hoping to get to read more good news soon!
love and prayers still going out to you from central pa!!
ReplyDeleteyour girls are just beautiful!! :)
ReplyDeleteSleep is good! CPAP is good! Pictures are good! Whew--I'm glad I read the baby signing website info. I was afraid Gwyneth was hearing impared when you first mentioned teaching her to sign. This is a very neat concept. Hang in there..still praying for your family. :-)
ReplyDeleteI don't think I've posted yet, although I've been following your story daily since shortly before Gwyneth was born. Just here to offer some support and lots of prayers. My triplet grandchildren were micropreemies, born at 27 weeks, so I'm well aware of the ups, downs and constant stress of the NICU. Wonderful to see you kangarooing your daughter. Our triplets came through the harrowing experience well and are nearly three years old now. Blessings on your little family. -Kate
ReplyDeleteI just waned to comment on the Sign Language thing. AWESOME idea! We did it with out son Jack and it really helped with the communication barrier when he was old enough to get it but not old enough to talk. He is two and uses a lot of things still and sometimes even comes up with his own signs!!!
ReplyDeletegood luck
God Bless
lindsay
Glad to hear the girls are doing well and continuing to improve!
ReplyDeleteMan, you actually gave some photography tips while you've been exhausted, busy, and such! That's so generous of you and I absolutely LOVE your photos (definitely such a sweet camera you have there)! Some of the techniques you suggested are what I've been attempting to use with my lil digital camera. :-) Thanks for taking the time to inform, share, and help us!
I hope all the comments from everybody on this blog has made you feel very loved and supported! :-)
Oh, I've got a question regarding sign language. While someone suggested a speaking valve, I was wondering if you and Tricia have tried to learn some sign language to communicate with each other (other than writing), especially when Tricia can't really speak or is tired to do so? Even gestures may aid lipreading (which I know you've said was difficult for you). I think it'd be cool for you guys to learn some ASL in order to communicate with each other for these specific times and also for Gwyneth. And you never know, that knowledge might benefit you guys some day when you meet and converse with some deaf people! :-)
I have some ASL websites from which you can learn signs (there are videos of signs for various words, and you can practice from viewing them). I will email them to you.
Here's one word you might want to try telling Tricia---BEAUTIFUL. If you haven't learned this sign, the link is:
http://commtechlab.msu.edu/sites/aslweb/browser.htm
(and http://www.lifeprint.com/asl101/pages-signs/p/pretty.htm)
Let me know if Tricia is able to guess (if she doesn't know this sign yet) what you said and how she reacted. :-)
All the best,
Marissa
Ah, the links were cut off so I'm reposting them.
ReplyDeletehttp://commtechlab.msu.edu/sites/
aslweb/browser.htm
http://www.lifeprint.com/asl101/
pages-signs/p/pretty.htm
One of the lesser known benefits of signing with your children is the sweetness of a secret language that you share and few others can interpret. In my experience, I found it is best to start with the ASL signs and as she develops better hand coordination, go with the signs that she comes up with. Besides, hasn't she already signed 'I love you'?!! It really does cut down on the tantrums and frustration for both baby and parent before language has fully developed. My kids all spoke earlier and with a greater vocabulary than their peers. An added benefit is that you can communicate quietly in church! My kids still use it there. I think your forward thinking is so cool! keep on...
ReplyDeleteI've been following Tricia and Gwyneth's story since just before her birth, I heard about it on an internet board from Tricia's sister. You all remain in our prayers and I'm thrilled at every advancement your lovely ladies are able to make.
ReplyDeleteOur youngest daughter is 3 with Down Syndrome, signing has been a marvelous thing for her, I can't praise it enough!
God Bless you all.
Praying for both of your girls today and so glad to hear Tricia is getting sleep. I will be praying for her "bug" to be healed and disappear so that she and Gwyneth can be together, and for her to be patient (sounds so cruel) and not let it aggitate her. She has been through so much. Peace to all of you.
ReplyDeleteLove, Laurie in Ca.
I've been blessed reading your blog! I found it through someone elses site. Our prayers are with you. Stay Strong!!
ReplyDeleteI hope this doesn't come across the wrong way, but I was thinking of how much I enjoy reading your blog, and I was thinking when you get your wife and daughter home, you could easily make your blog into a book, with a forward by Tricia, plenty of amazing baby shots, and we would all buy it! (You would also be an inspiration to other CF families, premie families, and Christian families) You could make sure to keep your hospital bills down and put that beautiful baby through college!
ReplyDeleteThat said, I'm so happy for all the father-daughter bonding, and as a mom of three girls I know the light-hearted competition of who loves baby more will be in full swing as soon as Tricia is able! It's a bit of fun we have around here, "fighting" over our children!
Thank you for always sharing with us!
Apryl in NC
Oh Nathan, I remember when I FINALLY got my first full night's sleep (unsedated----totally on my own sleep), I felt better immediately. It took me about 3-5 dedicated weeks from that point (traditional CPT 2x day from dear old mom) to get myself up to fighting form baseline levels pre-baby. (CPT has always done better for me than anything because you actually tilt and drain the junk out of your lungs)
ReplyDeleteAnyway, the rest will come.
Thanks for explaining the Tricia contact with the baby. It makes perfect sense. I went through the same thing. I slept in my room with my baby's blanket for weeks and it was such a comfort.
I wanted to comment on the spiritual warfare stuff. My mom has always been a big proponent that if anything happens that is not according to your will, it must be from Satan. I totally disagree and think the post your dad wrote on prayer and God's will versus our own last week is very POIGNANT.
You are a brilliant writer and photographer. I tell you, Gwyneth is going to have such a blessed life with you and Tricia. The humor and love and true artistic creativity is going to raise a very special uniquely gifted child!
Our prayers continue.
I just thought I'd mention that there was an AMAZING story on Oprah on Friday afternoon about organ donation. I highly recommend going to her website and checking it out!
ReplyDeleteNate,
ReplyDeleteJust wanted to let you know that I'm still thinking and praying about you, Tricia and Gwenyth in SE Michigan! Great news about the CPAP, can't wait to see pics of her beautiful face. Also, I've nannyed for a couple kids that have used baby signs and it seems like a great idea!
I watched part of the video you posted the other day when you got to hold Gwyneth. I was in the computer room of a hotel in Indiana for work (I had to check up on you guys!) with tears in my eyes! Thank you for continuing to share your amazing story :) Glory be to God.
Hi,
ReplyDeleteMy name is Ashley Adkins and I'm a friend of Debbie Bonhomme. I've recently joined a company called Gold Canyon Candles and we have what's called the "Prayer Child Foundation". If you'd like to contact me, I've been reading your story on your blog and if I could get some personal information from you, I could petition my company and possibly get a little money in your hands to help with Gweneth's medical bills or whatever else you might need the money to go towards. Because the foundation is centrally focused on children, the emphasis of my petition would be your daughter, and not your wife. However, I'm certain that every little bit helps, regardless of which person it is directed towards. If this is something you'd be interested in please email me at thegoldcanyoncandlegirl@live.com
If you want to talk to debbie and confirm the validity of this, please do.
Your sister in Christ,
Ashley
Nathan,
ReplyDeleteI hope you see this comment as I have a question I'm not sure anyone has asked. I come from a family of doctors who think they are God and most do not believe in any god or The God. However, my cousin just finished medical school and went into practice with his father (the biggest of non-believers in my family) and had never given God much thought until he did his ER rotation.
My uncle (his father) said that if a patient died it would be because the patient wasn't supposed to live (not that God was in control) but rather that the doctors had done everything and it just didn't work (kind of like "so sad for the patient then...")
My cousin while in his ER rotation said a man was "dead." Every doctor did everything possible to bring this man back and for all clinical purposes he was dead. A few seconds after saying he was dead the man began to breathe and his heart began to beat. It was then, that very second, that my cousin said he knew that it had to be God. He's believed ever since.
My question is:
During this time and all the publicity you guys have been getting regarding your faith and the miracles that seem to find you every day have you noticed if an prior non-believing doctors/nurses etc have started to see God for who He is? Have those who denied him started to seek him?
Just like my cousin who needed to see a miracle of God before he beleived, I have often wondered if those seeing this medical miracle daily are starting to realize that God does exist and HE is in control and the doctors are just his workers.
I found you yesterday, and I have read every word of the precious story of the journey of your family. Your faith and willingness to be transparent are a blessing to me and obviously thousands of others. My sister-in-law also has CF, also had a difficult pregnancy (but a beautiful healthy 2 year old, praise God) and is close to needing a transplant. Your story is a reminder that God's will is often a winding path, leading us where we least expect, but ending up right where He wants us to be. I've laughed, I've cried, and most importantly, I've prayed. God bless you and your beautiful girls!
ReplyDeleteMy neighbor's daughter is a friend of Trisha, and she sent me your story about a month ago. I check it daily to see how you are....
ReplyDeleteI am a practicing Jewish person, and am so heartened to read about your commitment to your family, and to G-d. I pray for you and your strength, for your family, and for good health for all of you. Thank you for sharing your story....
Myrna Ryder
No way on the book- keep the blog going until Gweneth is married!~
ReplyDeleteAn awesome book to read..., "Baby Signs" How to Talk with Your Baby Before Your Baby Can Talk by Linda Acredolo, PH.D, and Susan Goodwyn, PH.D. with Doug Abrams
ReplyDeleteYou'll love it! I used this book for my kids. One of my kids picked it up better then the other. It made things a lot easier since they couldn't verbalize too much when they were just learning to talk. My prayers are with you and the family at this time.
Hi Nate, I am so glad that you are going to teach Gwyneth to do baby sign. I was going to write and suggest that but thought ahh I am getting ahead of myself, plenty of time. The studies have shown that babies are less frustrated when they learn signs. I saw a cool video on Youtube but can't remember the address but am sure you could find it with a "baby sign" search. My daughter who is 10 now learned several signs as a baby, even though she has normal hearing. We also always had the captioning on the TV, she could read before Kindergarten and she is an A student. I don't know if there is a direct relationship or not but certainly did not hurt her. We have wonderful video of her signing "milk" and "more" and "strawberry" just to name a few of her signs! Hang in there and know that we are all behind you and Tricia 100% Blessings!
ReplyDeleteYour blog is amazing. The photos are also awesome! I personally love photographs as well. I've been in awe of the photos of the baby and cried at your video of you holding her her. What a perfect song. I wanted to say a few things 1) I kept a little boy several years ago that had been born 3 months early. He weighted just over a pound at birth. I kept him from the time he was 9 mos til he was 3. (He is now 11) It is so amazing what is possible through doctors and the medical field but most importantly, through Jesus Christ. I also wanted to say that I used sign language with my fourth child and it was so amazing how she communicated with us through signs (some she made up herself!) Up until she was able to speak. I full encourage everyone to use sign language with their children! Lastly, "Return To Me" has always been my husband's and my favorite movie- I was so happy to hear someone else who even knew of that movie. May God bless you and your family I am praying for you all.
ReplyDeleteCOntinuing to pray for you and your girls. Tricia is looking great. Gwyneth is so precious. I am continuing to ask for faith for you and your girls in decisions that you have made. I continue to support, in prayer, your decisions and know that they will be tough decisions for you and Trish.
ReplyDeleteFrom the heart,
Chelle
Hey Nate,
ReplyDeletei have been reading for a about a month now and have begun praying for you and your girls. Thank you so much for explaining everything in Layman's terms so it's all fairly easy to understand. thank you for sharing your love story and journey with the world... i found out about you and your family via several folks on xanga!
What amazing Love!
Vuctory in Jesus
Kimberley
kimmyo80@yahoo.com
Thank you for answering my questions.
ReplyDeleteGlad to hear Tricia is getting some sleep.
Laters
Kristen
A friend shared your blog with me and I want you to know that you and your family will be in my prayers. I can relate somewhat to your wife's CF. I have immotile cilia syndrome which is a rare lung disease.
ReplyDeleteJessica
Beautiful pics of a beautiful family! I especially loved the pictures of you holding your gorgeous daughter! As a mom, I cannot imagine not being able to hold my little one. I will continue to pray for your family and especially for strength for Tricia to be away from Gwyneth and for a quick, successful, healthy transplant. I will also pray that God's will for your lives includes those things. You are a great husband, a great father and a great Child of God. Pedestal or not, I have great admiration for you and the strength with which you are handling all of these situations.
ReplyDeleteContinued love and blessings to you and yours.
I am so glad Tricia got some good sleep. Yay for Cpap for Gwyneth! I am praying that pattern continues. Praying she makes it to the transplant list soon. I am lifting you up as well for strength, peace, and comfort during this time.
ReplyDeleteBlessings,
Shari
You are in our Prayers. You are a blessing and encouragement to many and We will pray for you daily. the Lord has given you a wonderful ministry and has blessed you with a precious family!
ReplyDeletepraise God for Gwyneth's progress and Tricia's sleep! Praying for the transplant activation....
ReplyDeleteThanks for taking time from your girls to answer our questions. I do have one (maybe two) more for you.
ReplyDeleteMy favorite part of being pregnant is laying next to my husband with his hand on my belly feeling the baby kick, and watching their relationship grow. It is amazing the baby knows his touch compared to anyone else. I was wondering were you able to experience the same, or did your Miracle come when she was still to small to kick you? Did Tricia get to feel her move?
Hi Nate,
ReplyDeleteThis is my first time to your site, but it won't be the last. Your story is amazing, and you are all in my prayers. Both of your girls are beautiful. I have a friend with CF and my boyfriend's dad has ALS. So I'm familiar with the trach and ventilator. I am also familiar with what Trisha had to do for CF when she was younger. BD's enzymes and all that stuff. Your blogs are straight from the heart and I am very inspired by what you write. If you want to read my blog, it is www.xanga.com/angelsamibabi.
Thanks,
Sami
You have mad photo skills yo! You have a gorgeous wife and amazing daughter dude! Thanks for being as honest as you know how.
ReplyDelete