We're still waiting for results from the genetic testing, but Little Dude's MRI of his brain looked good which was good news. Last Wednesday, he had surgery to have a G Tube placed in his stomach for feeding. It was a decision that we didn't make lightly, but ultimately it was the best choice for him and for us. I'm still dealing with guilt over it because I keep thinking that maybe I didn't try hard enough to get him to eat or maybe I'm just not a good enough mom because I can't feed my baby, but then he refuses the bottle for the 4th feeding in a row and I know that we did the right thing.
Because Little Dude has some catching up to do, we're feeding him 83 Ml of formula every 3 hours around the clock at the direction of his dietician. He gets his weight checked twice a week and we'll re-evaluate his feedings as his weight changes. As of yesterday, he was up to 9 pounds, 3 ounces which is an amazing weight gain for him. I start each feeding by offering him the bottle and work with him for 20-30 minutes before feeding him the rest via G Tube. Usually he'll take under an ounce by mouth and then refuse any more, but every once in a great while, he'll finish almost the whole bottle.
Little Dude actually cries harder and more frequently now that he did when he was starving. I keep reminding myself that it's a good sign because it means that he's thriving and has plenty of energy and strength. But, at the same time, it makes everything so much harder. He cries for hours every day and cries almost every time I set him down. Unfortunately, I have to lay him down to connect the tube extension to his G Tube to feed him and if he's crying and kicking, it makes it tricky to get it in. I spend a lot of time walking around the house with him because that's one of few ways to calm him down and keep him calm.
I've had quite a few people ask how I can handle all this. Honestly, I'm not handling it. I lose my temper with the kids more than I'd like to admit because I'm so stressed and exhausted. Somedays, I just want to quit or leave for a while, but I can't. I don't have a choice about all this and that's how I'm handling it. I have no choice, but to keep going even when I've only slept for 5 hours in the last two days, haven't eaten or gone to the bathroom in 9 hours, and Little Dude has been crying for 6 hours straight.
I do have a lot of help though. My wonderful family and friends have helped so much with the other kids, unpacking boxes at our new house, bringing meals over, etc. I've had to re-read my blog post I wrote about accepting help gracefully because it's hard to come to terms with the fact that I need so much help right now. My sister and her four kids came to stay this week with us, and while Hubby had his doubts about four extra kids in the house when things are already so hard, it's been such a relief and blessing to have her here. She's able to take care of meals for the other kids and entertain them while I focus on Little Dude. And, the best part is that, thanks to an old job she used to have, she's had a lot of experience with G Tubes and is able to feed Little Dude for me sometimes. No one else in our family knows how to tube feed him (Hubby and his mom are planning to learn, but haven't had the chance to yet) and I get so exhausted being the only one who can take care of him so it's a huge relief to have one other person who I know can do it too.
|My sister reading a story to all the kids except Little Dude.|
And to finish off this post, how about some 2 month stats on Little Dude...
Weight and height: As of yesterday (May 12th), he weighed 9 pounds, 3 ounces.
Wearing size: He's still in newborn and 0-3 month clothes. Most 0-3 month clothes is a little too big for him. He wears size 1 diapers.
Likes: Being swaddled and toasty warm. I got him some of these SwaddleMe blankets which are great because I can keep his arms wrapped up tight while still having access to his G Tube for feedings. He loves being sang to, snuggling, and his pacifier. While Little Dude was in the hospital, I got him this elephant that vibrates and plays lullabyes which seems to help him relax sometimes.
Dislikes: Being put down, having his diaper or clothes changed, eating, being in his carseat.