Friday, October 2, 2015

The Hungry Games: Mocking-James

This week we have had one goal: Make sure James is eating enough. 

James got to start eating Saturday afternoon. It was a tiny amount (10mL) just to make sure he could tolerate milk in his tummy. He did really well with small amounts, so Monday evening they started upping the minimum amount he was expected to eat. The plan was to add 10 mL at every other feeding until he reached 50 mL. He was doing well and the doctors thought he might be able to go home by mid week. That was until he was expected to eat more than 35 mL. Any more than that, and he was just too tired to finish eating. 


At that point on Tuesday morning, his doctor ordered an NG feeding tube to be put in so they could give him the remainder of his meals through the tube. For those of you who aren't familiar with a NG tube, it is basically a tube that is inserted in his nose and runs down to his stomach. 


At that point it felt like we had taken a couple of steps backward. He was doing so well. He was off of the oxygen machine, and they had taken one of his IV's out, but now we had to be on a feeding tube... When I think of a feeding tube, I think of someone who is really sick, and James looked great! The only problem was that he wasn't eating enough. 


He spent all day Tuesday and Wednesday taking partial amounts from the bottle, but needing the tube to finish his meals. So, It didn't look like we would be making it home mid-week as planned. 


Thursday morning his doctor told me we had a couple of options. IF James looked like he wasn't going to get the hang of eating well, we MIGHT have to surgically insert a tube into his stomach. In that case he would have a port in his abdomen where we would manually give him the remainder of his meals just like we were doing with the NG tube. However, since we live so close to the hospital, we had the option of going home with the NG tube still in place. It would require that Alex and I learn to place, pull, and check the placement of the tube, but it would be easier and less invasive than the G tube. If we chose to learn how to use the tube, we would be able to go home this coming weekend.


So, that's what we decided to do. Alex and I have been thoroughly trained on how to use the tube. And while it's not ideal, I feel confident that we can place, pull, and do any other required maintenance on his feeding tube. 

.............................................................


It is now Friday evening, and it doesn't look like we are going home this weekend. 


Last night I was staring to feel a little uneasy about coming home so soon. I was worried that we would get him home with his feeding tube, and he still wouldn't know how to eat properly. It is common for kids with Down's syndrome to have feeding issues, and I was worried that if we didn't try a little harder to get him to eat in the hospital that we would be stuck using a feeding tube for a very long time. 


I talked to our nurse and his doctor this morning about my concerns, and they agreed that it might be best to slow down his discharge plans. Today, we spent some time with one of the speech and feeding therapists. She helped us make sure he was using the right size bottle nipple, and we experimented with different holding positions to keep him awake longer during feedings. 


So, now we are expected to be at the hospital for a few more days. Even though we are REALLY excited about the idea of having home home soon, I am glad that we are giving him a chance to learn to eat without his tube. 


To make staying at the hospital a little more comfortable, he was given a little room upgrade today. Our new favorite nurse, Lauren, brought him a crib style bed (since he no longer needs to be on the warming bed) and a bouncy seat! I'm sure he'll love having something fun to look at and will love getting to spend sometime out of bed in his new seat.



11 comments:

  1. I think this is a great plan ��

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  2. From a dad's perspective, Lauren and Alex are doing a terrific job handling everything that they're up against. I've enjoyed being Lauren's transport to and from the hospital and getting some extra time with her. A few more days are no big deal and we've got your back.

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  3. Two amazing parents in the making. Every step of this journey has been well thought out and well received. Lauren and Alex are already wonderful parents to our sweet baby James. (There is a song in there somewhere!)

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  4. So glad to get an update. You two are doing an awesome job. James will soon get this eating thing down

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  5. I think the heading of your blog is hilarious!!! I was so happy to learn what was happening with James. It's wonderful you have professionals assisting and encouraging you both with your decisions on what's the best for Sweet James.

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  6. Lauren and Alex may you continue to follow your heart and instincts as you learn and grow as parents of this precious gift from God. ♡

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  7. Lauren, James is so blessed that you and Alex are such thorough parents. But you wee like this as a young girl so no surprises there. Baby steps. You're in my thoughts and prayers. Robin Rowe

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  8. Baby James is blessed to have such competent loving parents. You're in my thoughts and prayers

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  9. I am excited to see your post. As an outsider looking in and a 5 times grandma, I say ask for and get all the help you can get. It's normal as new parents and grandparents, to want your baby home and feeding is an issue with all newborns. He's beautiful and a really tough little guy and he already knows, he has amazing parents. God bless.

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  10. Lauren and Alex I applaud way you are being so brave and loving in taking care of sweet James. The decisions to look at are awesome and you both are taking great care to do the best thing for your baby. Know that God is really with you in these difficult times. I look at the smile on that face know the best is yet to come. Love to all of you. Gr Grandma Joan

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  11. Lauren, I applaud you and your hubby for asking the right questions and trusting your natural gut instinct on what is best for your baby James. Though this must be a scary time, you are handling it like a champ. God picks wonderful parents like yall are who are thorough and know what is best. One step at a time. Thank you for allowing me to be a part of your journey on this site.

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