Life has been busy. Brads schedule keeps fluctuating, two kiddos in school on different schedules and a baby with many appointments all over the area make for many busy weeks.
Brynlee is a sweet pea, such a happy, easy going baby girl. such a blessing in that. she adores her brothers and they goo-goo over her every chance they can get (you know when they’re not busy doing other big boy things!) 
Right now her only issue is weight. We’re working hard to find a good supplemental formula (I think we may have found it, knock on wood…) to give her to swallow her enzymes and a bottle or two a day to supplement as well. I’m mixing it at 27 calories instead of the regular 20, and after 6 different formula’s the Nutramigen so far is doing ok for her. we also believe she has a milk/soy protein allergy… so she’s fluctuating between not being on the growth chart at all, to the highest of the 3rd percentile. we’ve been taking her to clinic every other week…and now we’re kind of down to crunch time. in her first year of life as babies grow, so in turn do their lungs, so since she’s not growing well, neither are her lungs….not good. and we know that overall cf lung health is directly correlated with good nutrition, we can’t continue to let her weight remain an issue. I take her back to clinic this Wednesday, and if her weight isn’t improved after this week of added feeds, higher calories and the new formula, then she will be admitted for an NG tube. her body perhaps just needs a very elemental, predigested, broken down formula to absorb and grow as she should be. my heart is torn in two directions with this, because naturally its bringing Conner’s situation all back to me which is difficult, but also in my heart I want her to be fat and healthy. so naturally we’re going to do what's best for her, whatever Wednesday brings, and deal with the emotion that comes along with it as well. I can’t be wonder woman and pretend it’s not hard, but I also refuse to let myself feel guilt over something that’s out of my hands.
so for now that’s all there is to update on. lifes a bit rocky but we’re getting by, and we truly feel the love and the tremendous support we’re receiving from most everyone we speak with. it means so much to our family to know we’re not alone, and that we’re still very much loved and prayed for. It makes it all a bit easier! we have the best friends (real and virtual) in the world and we love and appreciate you all very much!
Blessings…
Sarah....when Alayna was a baby she was on predigested formula called progestimil (sp). Once she started that her weight shot up!
ReplyDeleteWhen Madeline was born she had MI and also had to have predigested formula. Just like Jen commented above...she was placed on Progestimil and that seemed to be the only formula that helped get her on the growth charts. We also had a HUGE tip from our GI doctor since Madeline was having a hard time getting on the charts. The GI suggested that we add 1 tsp of rice cereal or baby oatmeal per ounce of formula to her bottle at just a few months ago. Once we routinely did this...her weight SHOT up to the 50th percentile. The doctor mentioned that sometimes the cereal helps slow the formula down in the GI tract so they can absorb it getter and get the calories needed. It became our "magic" that after a few months kept Madeline above the 50th percentile .I hope you find something that works!
ReplyDeleteHi, I just wanted to you know that I 100% support you (from Canada). I am a 33 year old with CF and I feel a connection with your story.
ReplyDeleteKnow you and your family are in my thoughts. I'm always checking in to see how your daughter is doing.
Jess
Brynlee is gorgeous. You guys are often in heart and thoughts. Gain weight sweet little girl!
ReplyDeletePraying Brynlee gains weight soon and that you all have a very Merry Christmas.
ReplyDeleteWe did pregestimil and rice cereal too for weight issues in the first year and insurance paid because it was for a specialized diet. Brylee looks like such a sweetie. We love her little smile pictures on FB. Praying all works out smoothly for weight gain!
ReplyDeleteMy faughter has milk/soya intollerance and has been on the nutramigen since 6 weeks of age. She is coming up to 3 now and is as bright as a button :-) She is growing in all the right places, and she does very well without the dairy and soya. She now has Oat milk for her breakfast cereals which helps provide the calcium.
ReplyDeletejust be careful for in the future if they try to give rice milk, rice milk should not be given to a child under 5 according to the dietician we see at the hospital, it contains levels of arsenic too high for a small child to take. (on hearing this, i stopped drinking it myself! and I am way older than 5 hehe)
I lost my faith in God a while back, but I genuinely hope and PRAY that your little girl gets through, and starts to be able to put on weight, she is truly adorable. xx
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ReplyDeleteLast year I decided to take a step back from the CF Community. I felt myself becoming angry, resentful and judgmental of others’ in the community. I felt downtrodden and alone among those who were going through the same struggles. I stopped going to the blogs, I trimmed all the CF parents and CFers from my FB friends list, and I stopped going to the yahoo groups. I pulled back and I started to focus again on living life and being happy. It’s been great!
That said, I never stopped reading your blog. I followed your struggle, your grief, your gut-wrenching faith in the face of such adversity, and your wonderful gift of Brynlee. I even read the very unfeeling comment of Kaylee on your post about Brynlee having CF. (This reminded me of why I had stepped back from the CF Community.) And I decided I needed to say this to you because it can’t be said enough:
We have never met and likely never will but I wanted to commend you on your strength as a Christian, a mother, a wife, a friend, a writer, as a survivor. You are a wonderful person of worth, and Brynlee is blessed to have you as a mother just as Conner was blessed with his time here. Wishing you all the best but knowing you can handle even the worst.
Warm Regards,
Deedra
I don't know you but have read your blog for about 4 years now. I think about you often and hope your family is doing well. Hope little Brynlee is thriving and happy.
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