So, you might be wondering what's going on in this picture. Last Thursday we spent a long and exhausting day at Primary Children's Hospital, where we were referred to a nutrition clinic to investigate Madeline's slow weight gain. When this picture was taken, her arms were all wrapped up for a sweat chloride test in which she did not sweat enough to produce a sufficient sample, despite having heat packs strapped to her arms and being wrapped in several heated blankets. She also had some other lab work done, and we had a thorough consultation with a pediatrician and a dietitian. My poor babe was simply wiped out by the end of the day.After all of that, we found out that Madeline lacks an enzyme needed for properly digesting food and absorbing fat. The two most common reasons for this problem (a pancreatic insufficiency) are cystic fibrosis and Shwachman-Diamond Syndrome. It could be something else altogether, but those are the biggest suspects. For now we'll start giving her an enzyme before every meal, in addition to giving her iron drops and a daily dose of vitamins. We'll also keep meeting with the specialist to get to the bottom of this problem. I'm nervous, quite frankly.
When I look at Madeline's perfect little face, it's hard to believe that anything is wrong. She seems so healthy, albeit small, and she's incredibly alert and responsive. I simply adore when she breaks out in a grin, and there is nothing more perfect than just snuggling a warm little bundle of baby. I love it. Whatever her problem turns out to be, I know she'll be okay. Modern medicine is incredible, and with the proper medication, she'll have a normal, happy life. But even though I know that, it still doesn't feel okay.
I guess we'll just see where things go from here. Any prayers are appreciated.
17 comments:
First look at the picture and I thought, "Even her arms are getting chubby!" Oh, poor Maddie. We all love, love her, and pray that she'll have all the strength she needs to kick her problems in the bum.
BTW - Reader picked this up, but then it wasn't actually on your blog, but now it is . . .
Oh! Poor Maddie! I love you guys!
I will definitely keep you guys in my prayers! () -that's a hug!
We have been praying for you guys and will continue. And she does certainly look chubby in that picture. Keep up the good work and keep us posted. :)
We've been praying for Madeline in roommate prayer.
Hang in there best you can. I will keep you all in my thoughts and prayers - keep me posted.
I'm so sorry. I hate even the tiniest cause of worry with Ava and can't even imagine what I'd do if there were big worries. Hang in there!
You'll certainly be in our prayers. I'm so sorry that lil' Madeline has to undergo such tests; PCMC is great, though, and they'll take wonderful care of her, and she'll grow up fantastically, I have no doubt. Much love to you guys!
Ah your sweet lil' Maddie. I hope they can get everything figured out as soon as possible. Your family will be in our prayers.
Oh my heart goes out to you. Primary Childrens is incredible and it is always a comfort to know that there are skilled doctors that will help. We're praying for you!
Congratulations on the 6 pounds!! I'm glad you know more of what and why is happening. I'll definitely pray for you as you continue to learn what else you need to do to help Madeline. Hang in there! I wish I was your neighbor so I could help you with the enzymes, iron and vitamins.
She sure is adorable. I am thinking of you and praying for your sweet family. Modern medicine really is amazing. Take care and let me know how I can help!
Of course we will pray for you three. I hope they find the solution soon. I can't imagine how frustrating and scary it must be, especially watching her endure all the poking and prodding. But you're right, modern medicine is amazing and you will have lots of support. Keep us updated.
What an angel--what a darling, special little girl. We hope that she will give it a super kick "in the bum!" and we will pray for her too!
bless your sweet little girl. we're praying for her and you as well. sure love you.
We're thinking of you guys, she's so beautiful! And what incredibly amazing parents she has.. Love you guys!
what a little sweet potato. i'm sorry about the medical issues...hooray for modern medicine, dedicated doctors, primary children's...you are definitely in my prayers.
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