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Sunday, March 23, 2008

Weight Gain

The NICU medical team is becoming concerned about Gwyneth's weight. She is now nearly 11 weeks old, more than 35 weeks adjusted (gestation) and well below the growth curve for micro-preemies born at 24+ weeks. She weighed 1lb 6oz at birth, and has only gained a little more than 10oz since. While she may look bigger in the pictures (10oz of 32oz/2lbs is a large percentage), it has really only added a little bit of that baby fat and not much of any substantial growth.

3 days old

74 days old

Because she has been relatively healthy otherwise, it has not been such a concern until now. Lack of growth is usually accompanied by other serious issues, but she continues to breath well, eat well, and show good signs all around.

They are taking precautions to insure that she burns as few calories as possible, including keeping a close watch on her effort of breathing and limiting the amount of time we hold her (moving/holding preemies can cause them to burn extra of calories). We have not done Kangaroo Care in the past several weeks because of the contact isolation and then the scare from last week, but I will begin doing that again within the next few days as evidence shows this can often stimulate growth.

Because of her small size, we are probably still looking at a few more months in the hospital with her (as apposed to having hoped to be released near her original due date of April 24).

The good news is that she is developing well on the inside. Her lungs and other organs are developing as a healthy rate. Also good news is that she spent most of the past day without any breathing help.

Thank you for your continued thoughts and prayer.

Nate

75 comments:

  1. Your daughter is just beautiful. I am praying that she continues to gain weight.

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  2. Happy Easter, Gwyneth! I know that you are going to start gaining more weight soon. You are hungry, and think you will surprise everyone!


    Ginny

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  3. Will continue praying for her.
    Aspiemom

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  4. I hope she gains weight soon! I assume Duke has done a full endocrinological workup on her. When one of my daughters (26 weeker) had difficulty gaining weight, they told us they would check for thyroid problems. We decided to alternate formula and breast milk (instead of breask milk only), and my breast milk was fortified. It did the trick.

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  5. I was checking in thinking it would be cool if Tricia got her lungs today and I had even read yesterdays post that you wrote along the same lines. Well the day is not over so I am praying that she gets her miracle today.
    As for Gwyneth's growth I am praying that she continues to grow and am thanking God that He has kept her healthy and strong. Although it would be cool if you were able to take her home in April I am sure it would be difficult for you with Tricia still in the hospital. I am confident that God has it planned out so that Tricia and Gwyneth can both be in the hospital together so you can spend time with them both rather then trying to figure out how to care for a preemie at home and still hang with Tricia. Praying that Gwyneth chunks up (maybe you ccan sneak her a few of your Arby's Cheddar melts) and that Tricia gets her new lungs. Pleading with you before the throne of Grace that soon you will brining both girls home hopefully around the same time.
    Hugs and prayers for your precious miracle family on this special day of new life.
    Rachel in PA

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  6. Praying for your girls every day and asking God to watch over both of them. Gwyneth is getting so cute and it is great her insides are doing so good. She will start gaining weight soon I just know it. Have a wonderful Easter remembering the One who made our HOPE a reality.

    Love, Laurie in Ca.

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  7. I bet Gwyneth is just taking her time so she can stay close to mommy as long as possible. She looks wonderful and sounds like she is doing well other than the growth!

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  8. Happy Easter to you all! I pray for a renewed year full of more miracles! Def am praying that Gwyneth will catch up on her growth in the next few weeks to months, and most importantly, continue to remain healthy.

    Marissa :-)

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  9. Keep chugging along, Little One!

    Aunt Megan

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  10. We'll be praying that Gwyneth starts to gain weight more easily, with a view to getting home before too long. (Maybe she's just hinting she'd like some chocolate Easter eggs!) Take care. XXX

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  11. Grow baby grow, praying for health and weight for both your girls. Have an Awsome Easer.

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  12. Nate- those pictures really offer perspective. I agree that I was one of the many that believed her to be getting so much bigger.

    Thank you for letting me know how to pray specifically for Gwyneth. I will continue to pray for all members of your family as well as wisdom for hte physicians that treat.

    Happy Easter.

    Chelle'

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  13. Gweyneth, keep up the growth sweetheart, praying for you and you mom and dad!

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  14. Nate, thanks for the update. I will pray specifically for Gwyneth to pack on the ounces (baby steps, you know :) ).

    Keep on chugging, Gwyneth... We love you.

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  15. Praying for a healthy weight gain, but being petite has it's rewards as well. God has His mighty hands of protection around your precious little girl & she'll grow in His time...Chris says to encourage a bottle of Mt. Dew every now & then...but he's a dad...I think they're somehow wired to think that way! BTW, got RIck's email & read article...AWESOME! Our church is still praying for you 3, and so are we each day...actually we live near Pitt Co. Mem. Hosp. & every time we hear an "East Care Med. Chopper", we stop & say an "East Care Prayer", praying that it might be Tricia's new lungs, but also that the Lord will sustain the grieving family with the comfort & peace they need during this time. Just know that you are prayed for several times throughout our day & we are looking forward to the day when we can humbly thank God for answering our many prayers...and all the prayers from literally all over the world! Love y'all & Happy Easter...PS, we miss the beach this Easter, too.
    Jo & fellas

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  16. 1st. know that I am praying for Gwyneth's weight to improve, Tricia's new lungs to come available soon and all that good stuff that you guys need but haven't said that you need.

    2nd. Gwyneth looks like she's thinking "Let me get this straight. I am gonna get married and the guy that I am going to marry will be able to wear this bracelet on his finger?" or "Wow this is an interesting bracelet the Easter Bunny brought. It looks suspiciously like Daddy's wedding ring."

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  17. Praying that Gwyneth grows and grows!

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  18. Praying that today is the day, what a miracle it would be. There is surely coming a day soon! Baby is so precious and is that your ring on her? Incredible! We keep praying for you on a daily basis

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  19. I like how it looks like she's looking at the ring on her arm. :) I'll pray for her and hope she gains weight soon! Glad to know the other reports are good!

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  20. As always, praying for you all.

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  21. Best wishes to all of you and a Happy Easter.

    Gwyneth looks beautiful. I hope she gains weight more steadily very soon.

    xx

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  22. She is so beautiful Nate. I will continue to pray for your family, God is holding them close. May you have an blessed Easter.
    XOXO

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  23. I will be praying! God bless your sweet family, especially today! He is Risen! Lora

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  24. I pray and think of her daily. I trust she will grow into an active little girl and no one will ever know in a few years that she was a preemie.

    She does look so much bigger and so alert!

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  25. I will be praying that sweet Gwyneth starts packing on the pounds.

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  26. praying for weight gain - pack on those pounds Gwyn!! And I love the ring on her wrist!! Perfect!
    Erinn

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  27. Yeah! She IS wearing the ring for a bracelet! How cool is that?!?
    Was it my suggestion in the previous post or do great minds just think alike ;o)
    Praid HARD for you guys in church this morning.. Easter is almost over here, coldest in 40 years brrr

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  28. Feed those women at the breast milk bank, some of those bake sale items.

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  29. Are they putting human breast milk fortifier in her feeds? I'm sure they are - it's the only thing that got our son to finally begin gaining & we're about to inquire about using it again, as he's slowed down his gaining pattern recently.

    Hope all your prayers are answered very, very soon!

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  30. Happy Easter!! I am sure you are worried about Gwen's weight and I will not tell you not to because she is your daughter, and you will worrie any way, I can say she will grow, she may always be smaller than the other kids, as preemies tend to be, but none the less she will grow. You have said in the past she is getting breast milk, from a milk bank is she still getting it? Is the NICU adding Calories to her milk? They can add Calories with out using formula. And they have high Calorie formulas too. I hope all of you are having a great Easter.

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  31. What an awesome opportunity to share the Gospel with people around the world and awareness of organ donation and CF. Praying for new lungs for Tricia soon.

    www.smithfamilyx6.blogspot.com

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  32. Praying for growth for sweet
    Gwyneth and a peaceful night of rest for you all.

    anita

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  33. Gwyneth is so precious! Hope you have a great easter!!

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  34. "Abba, Father you have done so much in the short time since
    Gwyneth's birth. I thank you for sustaining her and protecting her this far. Jesus I ask now that you would make intercession to the Father for Gwyneth. I ask that this very week we would see an amazing weight gain in this little baby. To you be all the glory and honor for what you have done, are doing and will do."

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  35. Praying for real, measurable growth in all the right places for Gwyneth, stability for Tricia until her new lungs arrive, and peace, endurance, hope, and strength for you, Nathan. "And my God will meet all your needs according to his glorious riches in Christ Jesus." Phil 4: 19

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  36. silly Nate...don't you know the camera adds 10 pounds?

    our micro preemie peanut lagged behind right up until he was about 38 weeks- then he just gained like nobody's business. He is 2.5 years old today, and is fully a mischief maker. Check my blog to see the one day photo of my crew and the photos taken this weekend- you can't help but get inspired.

    us micro preemie parents need to stick together!

    Happy Easter!
    Helene

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  37. Nathan, It was nice to meet you at C3 Saturday night. Hopefully I didn't sound like a blathering idiot, but after praying for you and your sweet family for so long and finally meeting you, it was hard to know what to say. Please know that I do pray for you every time you come to mind and will continue to do so. I will also pray for your friend that came to church with you and his wife...I think her name was Christy. (Even if I am praying the wrong name, God knows who I mean) God bless you over and over and over again!
    Patty Honeycutt

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  38. praise God for well trained medical staff!

    Grow baby grow!

    still praying in SC

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  39. My five-year-old daughter, Sariah, drew a picture yesterday, out of the blue, and told me it was for Tricia and Gwyneth. She wanted me to put it in the mail and I was sorry to tell her that I don't have your address. That was the end of that until today when I was telling all of my kids that we need to pray specifically for Gwyneth to gain weight. As I was talking to them about that, Sariah reminded me about the picture she drew. Suddenly, I realized I could post it on her blog and refer you guys to it (slapping hand to forehead!). Oh, and she'd like me to ask you over to our home once everyone is well, LOL!

    Here's the link:
    http://duckybloggy.blogspot.com/2008/03/for-tricia-and-baby-gwyneth.html

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  40. In case that link doesn't work (it seems to be cut off), here's her blog address. It will be the top post:

    http://duckybloggy.blogspot.com

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  41. Yikes, sorry to leave so many comments but I have to say it was so cute because she started this drawing over several times because she was trying to make Gwyneth small!

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  42. Dear Nick,

    I just wanted to leave you a note of encouragement. Our son was born at 23w0d (he is a surviving twin as his twin sister only stayed with us for 102 mins). He didn't get off the ventilator till almost his estimated due date and stayed in NICU for 2 more months beyond his due date. He is now a happy toddler although he seems to have developed quite a healthy fear of doctors and nurses. :) Its discouraging when our little ones' homecoming date is delayed especially it seems so standard for other preemies to go home on or before their due dates. But I guess in your case, Duke is kind of your home these days since both your girls are there. I don't know how long it takes to recover from a lung transplant but I am praying that somehow Tricia will be able to come home with you and Gwenyth at the same time!

    Sonia

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  43. praying for continued health and great weight gain! jen in al

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  44. What a beautiful new photo! I was so surprised to see your article FRONT PAGE when my Dad (who's visiting from Nashville) brought in the paper. I was like -- I read their blog!! What a great article. Loved the photos.

    UNC NICU RN

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  45. Nate and Tricia,
    We've never met and I am sure you've heard that so many times but I am a friend of Anita Lewis. We went to the same church together and were in youth together. Anyway, she sent me your blog months ago and I check it every day. Its amazing that in the family of God we are still " family". I won't even say I understand what you and your precious family must be going through but just know you are being prayed for.
    You know all the right things and have heard all those things before but just know you are his child and he won't let you go.
    In Christ,
    Laura Russell

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  46. Happy Easter to all of you! You continue to amaze me each day with how well you keep us all updated. I pray daily for both of your girls. I will be praying for steady weight gain for Gwyneth and of course that a new set of lungs would be available for Tricia soon.

    Tammy

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  47. Happy Easter to you all. I will continue to pray for both of your girls, and continued health for you as well.

    Mary
    Florida

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  48. This comment has been removed by the author.

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  49. Happy first Easter Gwyneth! Grow baby, grow! It's interesting - b/c although she is extremely petite, compared to her birth pictures, she looks so much more filled out! I will continue to pray for her health!
    ~Lynn/PA

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  50. Nathan, I have not posted here before but have been following your story for quite some time. As the mom of a 1 lb 6 oz 28 weeker who took her sweet time packing on the pounds I can understand what you must be feeling right now. I could go on and on about what worked for us but I am sure that your doctors have a handle on that. I just wanted to let you know that they do grow (something our Doctors had to reassure me of many times) and I have faith Gwyneth will climbing up the scale very soon.

    Continually praying for you and your family.

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  51. I'll pray specifically for her weight gain tonight . . . blessings to you this Easter!

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  52. I had a friend who was born 10 weeks early. Her baby days sound a little similar to Gwyneth's...she did not have any hearing/vision problems and ate well and breathed well...everything was good except she was tiny! They began to get a little concerned about her lack of weight gain, but she continued to stay healthy. She is still small (she's in her 20s now, in college and very smart!) but has never had any major health issues.
    I know every story is different and no one can understand your situation, but I hope this little story can offer you some comfort! You know Gwyneth is a little fighter and she has her own plan for how best to survive in this world.
    I hope you had a good Easter, you know you had nearly 2 million people praying for you today!

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  53. Praying. Happy Easter!
    God's love and peace to you!

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  54. I hope your hungry girl will keep on putting on the pounds!! Saying prayers for her tonight on her first Easter, AND praying for her mama to get those lungs....

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  55. praying for poundage. great article in the paper. y'all are an inspiration of what it looks like to walk by faith.

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  56. Happy first Easter Gwyneth! Let's pretend that your liqid fare is, cheese taters, ham, green beans, and hot rolls with real butter! Believe me little one, I would share my extra with you in a second if only I could!

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  57. Nate,
    For what it's worth, my ex-25-wkr had some problems gaining weight in the NICU (he had to stay in the NICU for a week to accomodate scheduling for his hernia surgery, but when they started talking about sending him home, he was still under 4lbs), but once I got him home and he started eating on demand instead of on their schedule, he really started putting on the pounds. In fact, at one of his NICU follow up appointments the Neo not so subtly told me that I didn't have to feed him EVERY time he cried. Ha. I think once she gets a little reserves, she will start building on that and take off.

    Although I will say that my son stayed on a nasal cannula with a very low flow (in the NICU and at home for a few month) longer than he needed it for his lungs just so he didn't burn too many calories trying to breath without any help. I was wondering your doc's position on that when I read that they took the O2 from Gwyneth. I am sure your medical team is more than competent, but you may want to ask them if that might help her put on weight.
    Best,
    Erin

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  58. Still praying for you all!
    ~Jenn

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  59. Let them throw in some of that higher calorie formula for preemies every once in a while and maybe Gwyneth will start gaining faster. She does look like she has plumped up a good bit in her pictures, and she indeed does look much healthier and stronger than she did two months ago. And, her bracelet fits better now, too! I wish I could donate some of my weight gaining talent to her but I don't think that's possible! Let's see what the high octane formala will do. I actually had to put my full term babies on formula as they failed to gain weight on breast milk for some crazy reason.

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  60. Happy first Easter, baby girl! I thought of you many times today, as I wondered what you were doing after I wondered what my own baby girl, born nine months ago, is doing in Heaven today. I will be praying for you to pack on some pounds, so that even your little fat rolls will glorify your Lord. You are amazing and God is using you in mighty ways. Just one of those ways is that you are the only baby that brings this brokenhearted mother nothing but absolute joy when I see you and pray for your progress. You are a mighty miracle to behold, Gwyneth Rose, and I thank God for you!

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  61. I am praying sweet Gwyneth will continue to gain weight! The Lord is good and He can do anything!

    Blessings from Arizona

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  62. Well keep praying for Gwyneth and add especially that she will gain some weight and grow. Thanks for the update.

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  63. Continuing to pray! While I'm sure her docs know exactly what they are talking about, you can't always rely on charts. My two year old isn't on the charts at all. He is very small for his age and we have done tests and everything is fine! His older brother was small and my husband was small. My two year old isn't even 20 pounds---about the size of a one year old. Anyway, Gwyneth is small, but I'm praying that is all---just small!

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  64. To give some perspective on Gwyneth's weight, I am 36 weeks pregnant (about where Tricia would be had she been able to carry to term) and my baby is about 6+ lbs already. I'll continue praying for your whole family.

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  65. She is so beautiful. She is concentrating on your ring...WOW. That speaks volunes about her development. She keeps letting them know she's hungry, and she will gain weight soon. You are all in my prayers.

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  66. Nate,
    Having had a single birth prematurely, and then a set of twins at 32 weeks, I can relate to the concerns of weight gain. I would be afraid to suggest formula of any kind. It's known to cause NEC in premies. You might want to read about it. I nursed both our twins with no supplement. I was advised to take the largest amount of Brewers yeast that is recommened. My milk was very rich, thanks to the brewers yeast. That was 24 years ago, so they might suggest other things now as well. A breast feeding organization that encourages breast feeding is La Leche League. You might want to google them and explain the situation. I'm sure there is someone around Duke well aware of La Leche, since the milk bank is so close by. Gwyneth will gain. She is looking so much better already. And as the others have said, it would be so nice if Tricia could be rolled out of the hospital with Gwyneth in her arms. Now wouldn't that be something for the newspapers to write about!!! Our love and prayers are with all of the family. I'll be walking in Rome, GA on May 31st for Tricia and Gwyneth.

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  67. Aww, she looks so cute with your ring on as a bracelet! I would ask the staff if they could try supplementing her breast milk with some of the higher calorie preemie forumla. That will surely put on the ounces!

    When our son was in the NICU, the staff also told us to limit us holding him for fear of overstimulating him and burning calories so I understand that part well. We were also advised to limit our handling him and photo taking as that apparently causes overstimulation as well, especially if you use the flash. Thought I would mention that in case they hadn't because I know how you love photographing your little girl! I agree with the other commenter about perhaps keeping her on some low flow oxygen so she isn't stressed out too much to have to breathe without assistance, therefore using up more energy. '

    Our son was on low flow O2 even when he came home for about a month and now he's growing and thriving beautifully (without O2)! I think God has a plan for you and Gwyneth, and knows that you cannot be in two places at once right now. He is making it possible for you to have both your girls in one place so you can be there for both of them rather than home with Gywneth in Nags Head and not being able to stay with Tricia at Duke. You are truly blessed! We continue to pray for your family!

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  68. Praying and hoping! You're all in our thoughts!!

    Heidi R.

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  69. Nate and Tricia-
    Happy Easter to the 3 of you. Gwyneth looks beautiful as always. I know that the baby will start gaining weight, before you know it she is going to be big and healthy asking to share your Arbby's with you!(hahaha) LOL. I pray each day that you all stay strong and keep your spirits up.

    Megan

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  70. Just checking in and hoping Gwyneth can start putting on the much needed weight. My little girl (former 26 weeker) had a tough time gaining weight too. 3 months into the process they fortified my breast milk to 31 calories (not usually done) and it finally started to work. But the stomach pains she had werent' worth it to us so we made them look at other options. Good luck. Always praying for you and Tricia and Gwyneth.

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  71. Continuing to pray for you sweet Gwyneth. You are precious and I will look forward to seeing you gain some weight! Give those Doctors something else to be shocked about!!
    Kim

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  72. My daughter is a former 23 weeker and during her stay in the NICU had no problems gaining weight. She stayed on a ventilator for 2 months - she could have been off a few weeks earlier but had some infections that set her back. The NICU staff said that moving her off the vent would make her burn alot of calories breathing and they didn't want to slow down her weight-gain. I know that each NICU has different ideas of the best thing to do - and that each baby is different but I just thought I'd let you know what worked for our little one. She will be 2 yrs old on Sunday and is doing wonderfully. Your story has been such a blessing to me - thank you so much for sharing your story.
    -Becky

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