Tuesday, March 26, 2013

On a feeding tube. Again.

It's been a crazy week.  Since I last posted, we had our dear friends, the Popps, visit from Wisconsin for nearly a week.  That's eight kids under one roof.  And you know all those awesome photos I should be sharing?  Well, the only photos I have from their visit are ones like this:

Handsome Hero and Mr. Shaun worked some manly magic on a pump outside.  I'll share more on that later, along with some photos with humans in them {after I beg the Popps for copies since all I apparently took are of pipes}.  It was a wonderful trip with wonderful friends and the kids got along really well with few squabbles.  There was the incident of the two-year-old sticking a bead up her nose, but other than that it was good clean fun.

We have also had two birthdays, Handsome Hero's and Ella's, and I'm excited to share about those, along with some home projects I'm anxious to tell you about, but this post is simply an update on this dreamy stud. 

We have been working for awhile to get a different feeding tube for Gater, and we finally got it.  Let's see if I can explain without confusing you.  It still makes me go a little cross-eyed trying to understand it all.

When Jack went through this, he had a feeding tube that went directly into his stomach.  It was called an NG tube.  Nasal-Gastro- something.  That is what we originally thought Nate would receive, but the G.I. group at the hospital had decided as a team {well before they met Nate} to have a policy that they would no longer use NG tubes, preferring NJ tubes {Nasal J-something - it goes through his stomach and into his small intestine}.  They explained to us that they saw no difference in results and they viewed the NJ as being a little safer, so Nate received an NJ tube at the hospital and had it for four weeks with no weight gain outside of the initial small jump.  

We had hoped after Nate pulled out the tube that we would be able to get him to eat without needing to replace it, but after a couple of weeks of holding a steady weight he began to lose again at the rate of an ounce per day.

As Handsome Hero and I talked about it and sought counsel from some friends in the medical field, we decided to look for someone who would try an NG tube for Nate.  There are three reasons for this.

1.  Because it goes straight into the stomach, his tummy would get that full feeling that he hasn't had in a really long time.

2.  While the NJ tube uses a drip bag on an I.V. tree and feeds continuously overnight, the NG tube uses gravity bolus feedings throughout the day {at least this is our method}, essentially feeding him meals.

3.  It worked in two weeks for Jack, and while we have no illusions that Nate will get better that quickly {it's already been three months since we discovered a problem}, it was worth a try.  Since this condition is rare enough that none of these doctors have seen this before and yet Jack did the same thing, it seems reasonable to follow the course that worked in his situation.

I first called the G.I. group we had originally been with, since they had already treated Nate, but it was very quickly apparent that this was not going to work.  Our pediatrician found another pediatric G.I. who was willing to work with us and we had the NG tube placed on Friday.

Since receiving the NG tube, Gater has gained six ounces.  This is really exciting, considering he's not even on the weight charts right now!

In the spirit of keeping it real{or being Debbie Downer}, he also had initial weight gain with the NJ tube, so we don't know if this trend will continue, though we're hopeful.  Also, he still isn't eating.  Not a bite or a sip.  So even if he gains beautifully with the tube, until we can get him to eat, nothing has really changed.  His speech therapist says he's doing really well and she can see improvements.  I'm glad, because I surely can't! 

So how can you be praying?  Get ready, this is wordy.  Because the rest of this post hasn't been....

1.  Of course, pray that Nate would not just gain weight but would start to eat real food.  This would be the very best thing that could possibly happen!

2.  Well, as much as we fought for this, the NG tube is much harder, especially on me.  It means that after every single nursing, I have to hold a contraption over his head, feeding him through a tube for as long as it takes for the formula to go through.  It currently takes around forty-five minutes, but will soon take close to double that as we increase his calorie intake.  Now, I ask you, how does a girl parent two very active little bitties while holding an open container of formula over an infant's head and trying to keep him from pulling out the tube?  If you know, please tell me!

3.  I need to be uber-organized in order to maintain both the household and my sanity and keep the kids from being vegetables in front of that tempting babysitter, the television.  I am okay with them watching some, but I don't want to see them turning glassy-eyed and walking around with their arms stretched out in front of them moaning incoherently.  That's what happens when you watch too much TV.  I need to be utilizing the free minutes I do have so that the rest of the day goes more smoothly.

3.  I am praying for an attitude of grace, patience, and humor as we journey through this.  First with Handsome Hero.  At the best of times I struggle with the hours Handsome Hero's job demands.  I find that I can have a good attitude about it for most of day until near the time he is supposed to leave to come home.  Then I get antsy and start to get angry in advance of when he tells me he left later than he had intended, which happens every day.  It isn't fair to him, and he doesn't want to be gone or to be late coming home.  It's simply the nature of working in a mill.  It's harder than we had known it would be coming here, but it is still what we signed up for as a couple, and I am not making our home a pleasant place to be if he knows on his way home that he's headed for stormy waters.  Besides, it's not like Nate's situation is easy on him.  When he comes home after a really hard day, he has a lot more on his plate and doesn't need a snarling wife.

4.  I have to keep remembering that I only need grace for one particular moment.  The Lord will give me what I need at the exact moment I need it and I don't need to worry about using up my grace or laughter reservoir.  I don't need a good attitude tomorrow.  I just need it during breakfast.  Then I just need it while they're getting dressed.  Then I just need it....  You get the picture.  It's easier to think small right now.  Big is overwhelming.  I know there are wonderful Scriptures to support this, but I'm typing one-handed as I feed the baby, so I'll let you look them up.

Each day, sometimes several times each day, I hear about someone who is lifting us up in prayer, even though their own struggles seem much harder than ours.  It is more than humbling.  It is convicting and humiliating.  So often I am doing, but not praying, as we go through this.  I have been challenged greatly to grow in that area and I am so grateful.  Thank you all so much.  How amazing to serve a God of grace!

1 comment:

  1. Oh my, girl. I will continue to pray for you all. And sweet little Nate, what a trooper! We love you guys. I am so sorry you are walking this trial again, but you are right about God's grace. Will be praying your list every day. Talk with you soon, friend. Love you!