Friday, December 30, 2011

"how can I sell my breast milk"

is what is in our Google Search right now.

We're supposed to be home--the three of us--but the doctors thought it more convenient that we stay yet another day at Primary Children's hospital because "he has lost weight over the last three days."

Am I bitter? A little.

That's when Mark Googled to see how we can sell my breast milk. If you're in the market, give us a call. I'm producing a lot these days. After 1) giving birth, 2) getting transported via ambulance to two hospitals 3) having very $$ surgery (preluded with mucho expensive tests) 4) only having coverage for all this until January 4th 5) not getting to hold my baby for more than 30 minutes for a week 6) neglecting my impressive stitches and dealing with painful constipation for 10 days 7) anticipating another major surgery in 6 months (in which it is nearly impossible for any insurance to take Noah)... I could of course go on... we have a lot on our minds.

But I promise my list of things I'm grateful for is even longer! We've been SHOWERED with love and kindness--and I am eternally grateful for it, really.


I'm ready to go home. Live a normal life with my son and Mark. Heal--emotionally and physically. My poor baby has to poop through a hole in his stomach. And how am I going to face people who see it and look in disgust? It's a totally normal reaction. I almost passed out when I saw it the first few times.

Only 6 babies in Utah are born with Hirschsprung's Disease per year. Hirschsprung's is a disease found in the large intestine. Noah's lower colon (about 11 inches of it, or a little less than half) is absent of ganglion cells, which aid in moving stool through the bowels to the anus. In his 5 hour surgery, the surgeons (whom we absolutely love--seriously) took biopsies every four to five centimeters starting at the anus to test for these ganglion cells. After the 4th biopsy, they discovered them. This is where they pulled his intestine through his skin--called a colostomy--so that he could have bowel movements. His poor tummy was so distended that they were worried his bowels had an obstruction because of all the build up. This is why they ordered he have surgery on Christmas morning. It is a Christmas we will never forget. This all still feels like a bad dream. After Noah gets bigger and stronger in six months they will perform his "pull through" surgery. They will take his intestine and pull it back through the hole and pull it down to his anus and take out the part of the colon that doesn't have the ganglion cells. Isn't it crazy that they can do that? I'm grateful. While it's unfortunate that Noah will only have about 60% of his colon (that's not an exact percentage...just a guess), they have performed this surgery on kids with as little as 20% of their colon. Your large intestine doesn't deal much with nutrition--just water absorption. So for the rest of Noah's life, we will have to make sure that he is always hydrated and eating foods that comply with this disease. Because Noah was so big when he was born, he has dealt with all this stress beautifully. It may not be because he's so big, but I'm sure that helps! He is such a strong baby and has an amazing spirit about him. We love him so much, and I hope I never see him in pain again! I know, I know, not likely, but can't a mama wish?? The surgeons are very optimistic that he will live a completely normal, active life. We won't give up on him being a big wrestling super-star just like his daddy!

Luckily we have spent all day feeding him and making sure he expends as little energy as possible. His weight has increased because of it and it looks like we will get to go home tomorrow. Thank the heavens! But there's always that chance....keep your fingers crossed.

This is Noah with his very distended tummy. Although he looks like he's in pain, you would never know! Not even a whimper from this kid. We are so so grateful that he was able to get an operation to fix him! He's totally normal now and we can tell he feels great. We can't wait to take him home!

6 comments:

  1. Amy! Your little family is so strong! If you really have more breast milk than you know what to do with, we have these pamphlets at the office for this thing called Helping Hands Milk Bank. You can't sell it, but the bank gives money to breast cancer research for each ounce that is donated. And your milk can help other little NICU babies like Noah! The website is www.helpinghandsbank.com in case you're interested in checking it out. Your story is so inspiring! Thanks for sharing. I'm praying for Noah's health and your family's happiness! Love you guys!

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  2. Amy, he's such a cute boy! Congratulations! I'm sorry that you've had to deal with so much in the past couple weeks, and I hope that things get better and easier for you quickly. A family member of mine had a colostomy for many years (in adulthood), and so I know it can be a difficult thing, but also very manageable and I'm sure it'll be good for his little body! You're amazing and I'm sure you're such a wonderful mom!

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  3. It is totally amazing what they can do these days. Something I tell all my mommy friends (which may or may not help) is while these memories of scary surgeries and moments of fear that are just impossible for anyone to understand, will be with you forever we can all breathe a little easier knowing Noah will not remember these days. He wont remember the pokes and prods. I know I rest easier it breaks my heart still to see him enduring all of this. I know you have the most amazingly supportive family and your faith is helping you survive all of this! If I was in the market for breast milk I would certainly buy yours! I will keep saying my prayers for You, Noah, and Mark. You guys stay strong!!!

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  4. ahh! i'm sorry for all you guys have had to go through! that is just crazy. if you need anything, let us know!!

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  5. Amy! He is so darn cute!! I don't care if he as a colostomy bag, I will babysit anytime!! Really! Glad you guys are home now :)

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  6. Amy he is so cute!! I am sorry that he has had such a hard time so far in life. He will do great. I have prayed for all of you. I have a comment on breast milk. I hope this helps you a little. I have a sister in-law that is a lactation consultant at WIC. With my son I produced a ton on milk and he was not eating it as fast as it came in. She told me to pump it, and use sandwich or snack size zip lock bags. put the date time and how many oz. on the bag. put your milk in it and freeze it. It will last up to 3 months in your freezer or up to 6 months in a deep freezer. I loved it. I could pull it out and let his dad or sisters feed him while I ran to the store or did other things. I had so much that when he finally decided not stop nursing at 1 yr. I could still give it to him in his cup till it was gone.

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