Adjustment

We are settling into a new routine. In some ways, I feel like I’m back in the newborn days, not really knowing what I’m doing and waking up several times a night to “feed”. But, out of respect for all you mommies of newborns (I have a lot of friends who have had babies recently), it’s not that hard.

I’ve figured out the logistics and routines of the tube. And thankfully, as I suspected, all the steps and checks have become no big deal. Really, the tube is more of an annoyance than anything. I can’t just pick up Grayson and carry him around the house unless I want to drag his pole around with us. The tubing is constantly in the way and we have to be really careful not to pull on it when we are holding G. And of course G’s curious little hands want to play with the tube, not to mention his razor sharp teeth that are dying to chew through that delicious plastic. We are becoming reacquainted with masking tape, using copious amounts to tape the tube to the back of his clothing so it’s out of reach.

For all the annoyances, the tube is transforming Grayson before my eyes. I really can’t believe what a change I see in him, both physically and cognitively. He’s plumping up- his tummy is full and round, and his face is filling out. In the last two days, he has been babbling nonstop and carefully studying my mouth as I talk or sing. He’s saying “Mama”- randomly, and not really at me yet, but it’s exciting all the same. He loves Elmo’s voice and we play “Elmo’s Song” a lot and I swear he said “Mo Mo So” (Elmo’s Song) during one of the times we played it today. He’s giggling, smiling and interacting more than he ever has.

It’s amazing what actually having enough food can do, huh?

We’ve only actually left the house twice with the tube since we’ve been home- yesterday to go to the pediatrician for a follow up and today for a walk. This is going to have to change sometime soon- I am going a bit stir crazy staying home all day, every day. I’m disappointed I can’t work outside of home right now, since G obviously can’t go to daycare. And it’s annoying not to be able to just hop in the car to go to the store. We are supposed to be getting a backpack to carry the pump, and once we have that, I’m hoping mobility will be a little bit easier.

Grayson will probably have the NG tube a month or more. In order to avoid surgery to get a G tube, he has to show that he can take enough calories by mouth. We are working hard to get him to eat, and it’s going ok. Most days he eats breakfast really well, but lunch and dinner are hit or miss. I’m trying not to have too much anxiety about it, because I don’t want my anxiety to transfer to him. He needs to see food and eating as positive, so I try and make it fun and pleasant as possible.

So overall, we are doing well. I’m sure the next few weeks and months will bring more adjustment, and possibly tough decisions about Grayson’s care. We are just so grateful that for now, he seems to be making huge improvements!

Sweet, happy little boy
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10 thoughts on “Adjustment

  1. Hi Elizabeth!! We have been reading your blog and praying for you all. I am so so happy to hear that Grayson is making such huge improvements. This is really wonderful news. He is just the most precious child and you are such an amazing mom!! I am really inspired by your strength. I hope we will get to see you all soon and please know we are thinking of you all and keeping you close in our prayers. Much Love!!

  2. i'm so glad to hear about all the positive changes! maybe when blaine learns to eat someday he'll say mama!!!! 😉 [i hear ya on the 1 meal a day thing. 1 meal gets eaten and 2 meals are all tears]. in all seriousness though, you are doing amazing and it is so great to see things improving for you guys.

  3. Man, that feeding tube sounds like a pain in the rear! But it's wonderful to hear how Grayson is thriving. That makes me very happy indeed. I can't wait to hear how things keep improving. Go Grayson!

  4. Ditto to all the other comments! Very excited that physically and cognitively things you are seeing big changes! I get how that pole is a pain and being housebound stinks too! Sounds like it's going to be an ELMO christmas 🙂 PRaise God for his provision and answers to our prayers!

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