Tricia did get to see Gwyneth yesterday on her birthday...the nurses dressed Gwyneth and wrapped her and put a bow in her hair just for her mommy to see (pics coming soon).
Her fever has been low-grade for the past few days. We haven't hear yet about the latest blood culture/lab. She has some friends and family visiting today, and that always makes for a good and tiring day. She's been sleeping incredibly well.
She has had three episodes in the past week where she coughed up a small amount of blood. This is not uncommon for her (and other CFers), but it's still not the greatest thing in the world. It probably doesn't mean anything more than her throat/lungs are irritated by all of the coughing and suctioning, and that the Heparin is doing it's job, but it's no fun.
Gwyneth is doing wonderfully. She was placed back on the vent a few days ago simply because she wore herself out on the CPAP. She's doing most excellent the past few days, and should be placed back on CPAP in the next few days.
Also, she is now weighing in at a whopping 1lb 10.5oz, which means she's gained about 7oz in the past week. This is great news. I can actually see that she's gotten bigger in the past several days. The nurses continue to fight over who gets her every day and night. :)
Agnes went home for a long weekend (which she more than deserves), and my mom is here in her stay, which is very nice (she does my laundry for me...thanks, mom!) They've both been working hard at writing and sending thank-you cards out to those who have sent gifts (which is great because Tricia just can't seem to get that done right now for some reason...).
I've been able to hang with some guy friends the past few days away from the hospital for a few hours, which has been great. It's hard to be your full-self inside the walls of a hospital.
BJ tells me today that things are about the same for Nalin. They are very thankful for your thoughts and prayers.
> I can touch Gwyneth whenever I want to, although I'm very careful as Tricia is still on contact isolation and I don't want to transmit something between them. I usually just touch her when I first arrive at the hospital after a shower before seeing Tricia. I am able to hold her every other day, as long as she's stable, which she wasn't the past few days going from CPAP to Vent. I should be able to hold her in just a bit.
> Tricia's diabetes has only come on with the pregnancy. CF patients are very prone to diabetes, as are transplant patients (due to the large amount of steroids). She is not a good candidate for the pancreas transplant.
> Gwyneth's face is very expressive, but I'm told that she doesn't really have conscious control over her motions. She doesn't smile yet, at least not on purpose. She does yawn.
> My sleep schedule is back to normal (thanks to Tricia's great sleep), but my days have been busy, so I haven't been able to post as much as I'd like to.
> Tricia basically just told me about her CF just like she told me about any part of the rest of her life. I didn't learn all of the details until much later, but it was something that we talked about from the beginning.
> Tricia is not a candidate for a lobe transplant from living donors. (and, she's adopted, so we know nothing about her blood relatives)
PS. If I don't answer your specific question, it's either because I don't know the answer, I don't want to answer, or I've already answered (probably several times). :)
Nate, How wonderful that Gwyneth has gained wait! I'll continue to pray that Tricia's fever will go away and that she'll be added to the list soon!
I'm glad your mom's there to do your laundry. But I'm home alone and cold...
Can't wait for the pics.
Gotta go make a peanut butter sandwich for dinner.
I praise God that your girls got to see each other!! What a gift! I continue to lift your family in prayer as you come to my mind more than several times a day.
Your sister in Christ,
It sounds like things are going about as well as one could hope! I'm so thankful that Tricia was able to go see Gwyneth again and am looking forward to seeing the photos!
I am so happy things are going well for you all. I love to read the story and keep up, and I love seeing your pictures though tear jerkers, I absolutly love the videos, only funny thing is everytime I log onto this blog and begin reading the first thing I start to do is my own theme song for you all, carrie underwoods-american girl, it just fits both your girls, if you havent heard it you might search it via youtube if you have time. Good luck many of us are praying for you.
OH I can't wait to see those pics!! I bet they're too adorable!! I'm so glad Gwyneth has gained 7 ozs. What wonderful news!! I am so overly happy for you and Tricia and the wonderful things that are happening for your family. But, I must admit, my heart breaks every time I read that another baby in the NICU at Duke has died. I know that this is something that happens (When I had my daughter my dad was talking with a family whom he had no clue who they were because they had lost their baby at 20 weeks. While I was holding my 7lb. 13oz. bundle of joy, that other set of parents was holding their lifeless baby. It was a HUGE HUGE dose of humility and greatfulness for me!!! I couldn't control my emotions for that family) But... I am so very glad that Gwyneth is doing so wonderfully. It's great news.
Thanks for keeping us updated!!
Love and Hugs,
Bre from VA
Aren't moms wonderful! I'll bet your Mom is happy to do your laundry!
Go GOD! Keep up the good work Gwyneth! I know how exciting it is for each little ounce! When our youngest daughter was in the NICU we got sooo excited at those little yet huge things! I got to be great friends with one of our nurses and when we left boy did she load us up with goodies! And when we couldn't be there I knew she was being taken care of by Nurse Penny! Praying for continud strength for Tricia and I am so happy she was able to see her little girl today! I know that was good medicine! What a wonderful family!
Blessings in Tulsa!
Praying for your girls, both of them. And Gwyneth gaining 7 ozs. in one week is fantastic. I am sure Tricia loved getting to see her baby. This separation has to be hard for her no matter how we pray. Mommys and babies belong together. Praying it will be soon. Take care and good to hear you are both getting rest.
Laurie in Ca.
Whoever said, "No news is good news" didn't know what they were talking about. I've been concerned for Tricia and Gwyneth when I didn't see a new blog this afternoon. My husband always says to me, "If there's nothing to worry about, you'll find something!" Yes, I know God is in control, but my old nature kicks in when I get impatient for news. Glad to hear that Gwyneth is gaining weight. Before you know it, she'll be asking for the car keys. My prayers continue to be for all of you. As the Holy Spirit touches my heart, no matter where, no matter the time, I always send a prayer heavenward.
7 ounces! That is so awesome! Still praying that she continues to flourish. Thanks so much for the q & a update...Have a blessed day! I am praying for you and Tricia as well Stay encouraged in the Lord...
Mish says turn on the fireplace.
You can come eat Roast at our house tomorrow evening if you want.
Gwenyth's Great Uncle Andy
Just wanted to leave a comment to say hello & let you that I love your blog. You three are the sweetest family, and I will continue to remember you in prayer. Thank you for reminding me of the value of hope!
WAY TO GO LITTLE ROSE!!! 7 oz is a lot. How awesome. Cannot wait to see pics with a bow in her hair. Praying for Tricia!
With Love and Prayers,
LOVE it that Tricia was able to see Gwyneth! Totally LOVE it that Gwyneth is gaining weight! And LOVE it ... LOVE it that the nurses put a bow in Gwyneth's sweet little head of hair and that they dressed her up for her special visit with mommy! WOW! Can't wait to see those pix!
Nate - Glad you have managed to get back on schedule with your sleep. And, especially happy to hear that your mom is in town. I know she is enjoying "pampering" you. LET HER! As a mother of two, I can say that mothers love nothing more than taking care of their babies......even if they are all grown up!
I should say, I gained far more than 7oz or so, with Leah and no one was throwing parties for me! Hmph.
I probably will.
Glad to hear the girls are doing well, way to go little one, keep growing and doing all those good baby things.
Nate, so glad to hear you got out with friends for a little bit. You need to refuel yourself when you can. We will keep you all in our prayers.
I received a sweet note in the mail today from Agnes. :) Made my day. So glad to hear Tricia is sleeping and that Gwyneth has gained weight!!! Such wonderful news!!!
Your story is so inspirational andI thik thatthe three of you must be about the sweetest people God ever created. You are so sincere in your Faith and Hope.
(I am diabetic and have been for 40 years and it's not too bad a condition to handle, Tricia will handle it if she has to.)
I'm thinking of all of you and praying too.
Wow she's really growing now! Amazing what a little breastmilk (and a lot of prayers) can do! I'm glad Tricia got to see her...especially all dressed up.. I'm excited to see pictures!
Smiling on purpose when they are awake is an adjusted age thing. So even if she starts smiling in her sleep occasionally soon- she wont do it for real until she's *supposed* to be a few months old. Not to disappoint you- it's just something I have learned. Oh- so is knowing their name.
I'm so glad you guys are getting better sleep these days. We're still praying!
You're still doing a great job with everything Nate! Will keep Gwyneth in my prayers for continued weight gain and to be completely off the vent. Will pray for Tricia's low grade fever to go away, as well as the diabetes! Praying that she will be on the transplant list and all this will be behind the three of you before you know it!
AWESOME 7 oz! SO HaPpY that Tricia got to see Baby Gwyneth! So cool!
Happy Birthday Tricia! Still praying for the 3 of you.
Addicted to your blog-
I am so glad Mom and Baby got to have some "Girl Time", as my granddaughter says. It is the very BEST...
Nate...I can't believe you have the energy & the will to answer to such specific questions that we should'nt ask and just trust that you guys know what you are doing! to say that you ... meaning you, tricia, your dad & uncle andy her sisters... have touched and instructed us & motivated us & brought us closer to God through your blogs........reminded us of what we've forgot in our day to day angst......, our "job" is to just trust in our Lord and pray for your every need & our every need continuously......... met you & tricia on the walk b/c of work....learned of your blog the day before Gynn was born......we followed it all day at work....no block on our computers! It's difficult to express. but just know there are so many people praying for you daily.......w/every breath....my father had a heart transplant 15 years ago.......he's doing fine. so..... just know there are a lot of people who pray for you daily & also their children. It's constant. it must be exausting to update every day......but we read it........take care of your girls And YOURSELF...........
I can see the change too. She really is filling out nicely. What a miracle! Thanks again for sharing this with us. Prayers for your lovely wife. She is so pretty!
Gina in Nevada
She's beautiful!!! And a big "yea!" for her weight gain.
I'm so happy that Tricia got to see Gwyneth again today, too.
Continued prayers coming from Oregon for you all.
Good pics and update! Happy one month birthday Gwyneth!
I love your "poor dad's" comment about having to make a pb sandwich for dinner because your mom is there with you and Tricia. I can see where you get your sense of humor!!
Is Gwyneth's hair getting darker, or is it just the lighting in the pics? She's so precious!!
Still praying for you all, and glad that God has answered the prayers for rest for you guys!!
Such terrific news!! Thanks, also, for the update on Nalin. Do his parents have a blog? I would like to tell them personally that prayers are coming from Texas.
Glad your dad likes peanut butter sandwiches!
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