Scarlett is finally feeling better. She has been nauseated and grumpy most of the time since chemo on Friday. I can't blame her - it's got to be uncomfortable. But today is the first that she has not thrown up at all, and her appetite seems to be returning. Good girl!
You were all right - the shots have been easier since the first day, and are already no big deal.
Yesterday we had some good and bad news at her appointment. Her blood counts are good, and her body is recovering from the chemo. Good! They don't want her admitted over the weekend, since her doctors are not around, so weekday admissions whenever possible. Good! Her incisions are all healing well, and her head circumference is back to normal (for her) after the shunt placement. Good!
But: She is not gaining weight. BAD. Her appetite is very low (though returning) and that means she doesn't gain weight. She is already very, very small for her age (just over 12 pounds at almost 5 months; about the 3rd percentile), especially for a full-term baby. Babies can't really be convinced to eat when they don't want to; when we try to feed her, she just sticks her tongue out and refuses to suck. So, if she loses any weight at all, she will have an NG tube placed for the remainder of chemo. She had this before and after surgery - a tube going through her nose into her stomach. This allows us to feed her when she doesn't feel like eating.
While we knew this could happen, I didn't realize it would be so soon. It could happen Friday or next week; probably within the next few weeks. It's a minor complication for Scarlett; she will want to tug on it, like she does with all the monitoring lines in the hospital, which could displace it. It's more psychological and emotional for me - she will have a tube taped to her face for the next few months. No hiding it in pictures like her surgery scars, no covering it with a cute hat. When we go out, other people will not see her bright blue eyes or her pink cheeks or her gummy lopsided smile first. It will be a part of her history, so we just move forward with it, but it is not a great development.
THANK YOU to the Garretts for pizza and LeAnn for lasagna!
I am so happy that her appointments went well. I am an August 2010 BBC mom. Scarlett is such a trooper, and her triumphs never cease to amaze me.My daughter is almost 7 months, and just weighed in at 13lbs 13 oz, which i was concerned about but the pediatrician thinks its fine! Even if Scarlett cannot avoid having an NG tube, it could never hide that beautiful baby smile! I hope the good news continues, thinking and praying for you and your family!
Yay for the good news! I'm glad she's feeling better. Here's hoping she gains some weight and keeps growing and growing! Hang in there...
Brandi, Chris & Scarlett, I want you to know that you are amazing! You are the strongest people that I know & whenever I think of you (which is often) I lift your family up in prayer. Keep up the great work, I know that it is work. Stay strong & hold fast to one another. So glad for the good news & I know that the good news will continue to come. The NG tube is a minor road bump on the way to her healing. The calories will help her grow & heal & beat this "C." While I know that it is hard for you, it will be in Scarlett's best interest, so keep your chin up! Sending love, prayers & blessings from sweet home Alabama, Jennifer Sargent
Glad to hear Scarlett is starting to feel better. Every night, my son (7 months) and I pray for Scarlett to kick cancer's butt! I know our prayers are being answered! Now we'll pray for Scarlett to gain weight to! Consider it done! :)
Glad she is doing better. Hope she gains some weight1 But if i saw her on the streets i would notice how beautiful she is and not the tube! Keep Strong Mama!! Praying for you and chris and scarlett everyday!!!
I'm sure you've tried everything, but I had a few thoughts for you. have you tried feeding her while she's sleeping? She may take the bottle or breast better then. And have you tried different bottles? Also, could she have a little baby cereal? Maybe she would prefer eating from a spoon. I can understand why you would want to avoid the feeding tube :( If you have time, maybe check around BBC for a chat board for support for low weight babies or feeding tube babies. I'm glad that over all, she is doing well! Keep up the great work, mom and dad! Thoughts and prayers headed your way
Scarlett is such a beautiful little girl, and I guarantee you that when people see her in public, that is all that they are going to see. I know you are, but walk tall and be proud of her when you are out with her. Don't try to hide any of her tubes and scars, she is a fighter, and if people ask about them, be honest and tell them that she is fighting a horrible disease and is amazing in every way.
Will she start solids soon? I wonder if the new-ness of solids would make her interested in eating enough that she would eat anyway even if she's not hungry?
You guys have all handled all of this so, so well. I know this is just a blip on the radar that you will sail right through!
I have been lurking for quite some time now:) My son who has a whole different set of issues had an ng tube, and now has a g-tube. I hated how it looked, I hated having to change it myself. BUT oh how he grew, and stayed healthy.
Just from one mom to another....Thinking of you often
Hope she starts eating soon on her own! My prayers for that!
I am a California mom from the October BBC boards and had my own daughter, Mia, on the 23rd. I think about you guys often and wish you the absolute best in this trying time. You guys write beautifully and I will continue to follow your blog and send many happy and good thoughts your way for your beautful daughter
Have the doctors mentioned a milk fortifier. I used to work with preemies and failure to thrive babies and we used to mix something called human milk fortifier in all of the bottles. It just basically adds calories. Is she also on a high calorie formula, something like neosure? I hope she grows quickly so the tube is short lived.
No one will ever see Scarlett for her NG tube. She is a beautiful girl and that is what people will see. People may be curious, but ultimately, it shouldn't matter if there are a thousand tubes coming out of her nose. She's still adorable. I am so glad she is feeling better. Our family is still thinking of yours every day, even though we've never met. Best of luck!
She is beautiful no matter what!
Christine from BBC preemie board. Your little girl is a beautiful fighter and you will all see past that tube to her lovely face. I know because my son was on a vent for 83 days and had a feeding tube for months but all we saw were his beautiful eyes. God Bless
my DD has always been smaller than scarlett...and the docs say she looks healthy! HTH in some way. shes just over 11lbs and were a week away from the 5 month mark <3
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