Fix Your Eyes on What is Unseen

Today was a much better day. I did not feel like I was strapped to the tube all day. At one point yesterday, I thought to myself, "This is just like an umbilical cord. If I do this for nine months, this is just like being attached to the girls while they were in utero." I'd gladly do that for Esias. And you know how I was all worried about bonding because the bottle feeding would not be there? Well, tube feeding a one-year-old is very conducive to bonding because I basically carry him around for the whole hour, three times a day!

He was in a much better mood today too. We talked to the doctor for quite a while today, and she said that spoon feeding him thick purees is a great thing to do. So that makes me feel better. I think we will do that three times a day during meals so he feels a part of them. Still no liquids and that could be for a while. All in all, he is tolerating the tube feeds very well. His tube is staying in too. We changed the Tegaderm tape today and he didn't like that but it worked.

Here are some adorable shots of my adorable kiddlets. They are the lights of my life! Abundant blessings all around here in the Grimes home. You just gotta look up.


I put Esias' feeding pack on him- it was hilarious and weighs about as much as he does! It looked like a jetpack.

oops, fell over. Look at the cutest tootsies.


Annoyed at mom for strapping that thing on him!

Here's his getup- the tube goes into his shirt so he doesn't pull at it. Then I hold the other end in the backpack.


Our adorable brood.



Don't mind Esias' completely slobbered on sweatshirt. It's impossible to keep his shirt dry! Love the faces here.

Zias in the hospital, Day two of his feeding tube.

I intended to write a post on non-feeding-tube things today, but I can't get this off my mind. Esias is just as sad as sad can be about not getting to eat through his mouth! Tonight, he conned me into picking him up only so he could reach behind me and grab two chocolate chip cookies and stuff them into his mouth before we knew what hat hit us. Poor little dude was pretty angry when we took those yummies away. So far, he is getting all his liquids in the tube and we've given him small amounts of purees to keep him interested in oral feedings. This is proving to be one of the toughest things I have had to deal with with my kids. It's just an instinct to want to feed your child. His little sad eyes pierce my heart! I know exactly what he's saying to me! He's so confused and mad. I found the pacifier today and he sucked it like he's never sucked before. I am going to call the doctor tomorrow and see if we can adjust the caloric intake. Perhaps he's just not satisfied? I don't know. I'm grasping at straws here. It's really hard for my logical side (don't laugh dad!) to convince my emotional side that we're doing the right thing here!

So we're home and we're getting settled with this tube feed situation. The very good news is that since starting the tube feeds yesterday, Esias has not coughed or gagged on his food at all. That is awesome. We've never seen him do that! We are just now doing the first tube feeding at home. It took us a little longer than it did the nurses but we got it. And we figured a way to keep him still while it pumps- it's doing 120ml over the course of an hour. We held him for a while (the pump is portable) and then we put him in the highchair and hung the pump behind him. While we eat, we are going to give him tastes of things, not really enough to chew but just enough to experience mealtimes with us.

I am happy to say that I placed the line that is in his nose right now! We had to learn before we left, so I went for it. They said I did a good job. He didn't like it, but it has stayed in so far! He has a feed right now then another 40ml/hr for 10 hours over night, so that is a slow feed. Should help with the reflux/aspiration.

Nissen Fundoplication Procedure

Ok, so here is what's going on. We came here today expecting to get an NG tube (through the nose) and then watch him today and see how he tolerates NG feedings. Then go under Wed. AM and have the more permanent G-tube placed in his abdomen. Well, after talking with the GI docs and the pediatric surgeon, they think we will stay overnight and do some more NG slow feeds, then go home with the NG tube. The reason is because some kids who reflux (as Esias does) also need a Nissen Fundoplication in addition to the G-tube placement, and it would be better to do these two together. We don't want to do these two together Wed. because they don't have enough information to warrant the Nissen unless we watch him for a few days of tube feedings. So, the easiest way to do that is to send him home with the NG tube and then come back for one surgery where the Gtube and Nissen would happen together OR just the G-tube if his symptoms don't show need for the Nissen. Clear as mud? I know. Click on the link above if you want to read about the Nissen, but it basically just tightens the muscle of the stomach and the esophagus so that the stomach contents don't reflux.

We are sharing a room here which royaly bites. The other family is nice and everything but they have watched TV nonstop for hours and are taking up the whole room :) Oh well, they might go home tomorrow and it sounds like we will anyway, so it will only be tonight!

Good night!

We've been here all day the NG feedings are going well. Looks like the plans may change a bit- we may not get the G tube tomorrow- we may wait and see how he does on the NG feeds for a few days/a week, then schedule the Gtube placement and perhaps a Nissen .

Me: I don't really want this tube, and I don't understand why we're going through this.

God: Psalm 3:5-6

Trust in the LORD with all your heart
and lean not on your own understanding...in all your ways acknowledge him,
and he will make your paths straight.

Me: We're tired of all this medical stuff.

God: Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest.

Me: I feel incompetent to handle this.

God: Phil. 4:13 I can do everything through him who gives me strength.

Me: I am worrying and I can't stop my mind from going to the worst case scenario.

God: Phil. 3:6-7,8 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus...whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

** ** **

It's true that having scripture stored up in your mind and heart can really come in handy. These verses are speaking truth to me today. I am still wrestling with this but I also can feel God loosening the grip of my hands and telling me, "Give this to me, daughter. Esias is mine, I created him, I love him more than you do." I'm a slow learner, Lord! Have patience with me.

Who is cuter than this boy?

So here are my prayer requests for anyone who is still putting up with my boring and whiny posts!

1. Details! That sitters and the kids would stay healthy and that all childcare needs would work out well!
2. That the girls would not feel stressed or anxious over the different schedule and people.
3. That Esias' surgery would be quick and without complications.
4. That we would be allowed to give him small amounts of food in his mouth post-tube.
5. Bonding and cuddling time between mom and Esias.
6. Sleep!
7. That Esias would not reflux more after the tube is placed.
8. That I can keep my head on straight while learning how to do all this tube stuff.
9. No vertigo.
10. No migraines for Dan.
11. This is a silly one- but that we would get the bigger, quieter room on the floor...

Usually means I am having trouble processing something! This time is no exception! This whole tube thing is throwing me off!

Other than that, here is what's going on around here:

-Esias learned how to use a sippy cup!
-Esias is walking all over now- as his main means of transportation! Well, other than being strapped into his carseat at the mercy of his mother's schedule
-Elly's eczema is flaring like crazy. She is not scabing over except in one spot but she is having burning and itching like crazy. Today she was so itchy we gave her Benadryl and she conked out so fast!
-We had Eden's first grade conference Thursday and she is doing great. She's reading well above grade level and is doing great in math and science too. Her teacher said she is a very good citizen! (they talk about that alot in class, and Eden wrote it out "sitasin" in her journal!)
-Elly is behaving really well with the exception of how she messes with her brother! Those two wrestle and get into each other's business all the time. Elly likes to "help me" by grabbing Esias mid-toddle and pulling him into her lap. She loves him so much!
-Esias has had occupational therapy (the specialist that will help with the feeding) and she told us that while his delay is significant, she sees good things happening that make her think he is on his way. The great thing is I don't think he will need physical therapy. That part seems to be catching up just fine!

Ok, sorry for all the wordy posts and no pics. I'm not that sorry though, since this post is more of the same.

Esias is scheduled to go into the hospital Tuesday the 17th at 9am to get an NG tube placed. This is the one that goes down your nose. They will watch him all day to see how he handles it. Then the next morning, they will laproscopically place the G tube in his abdomen. This one is a "peg" tube. It will be the more permanent kind. We will be able to come home on Thursday the 19th if all goes as planned.

We are slowly getting daycare/chauffeur duties taken care of. I think we're getting close. Thanks to all of you who have volunteered to watch the girls. It's so nice to have great friends. This hospitalization is not going to be the best timing, since Dan cannot have the time off (not even unpaid because of some responsiblities) so it will be me with Esias, the girls with sitters and at school, and Dan at work til 5- then we can switch or whatever. A little crazy, but we'll manage.

I am stressing about not being able to feed my son with a bottle. I seriously enjoy that time with him and it has been so good for our bonding. I cried and cried when I weaned Elly and I am dreading this transition with the same grief. I love feeding my baby boy.

That's all for now! I need some rest.

Here's a new word that Elly thinks we should all use:

kindful (KIND-fl), adj. being full of kindness.

"Once, when I was in the bathroom at Target, a kindful lady pulled down the paper towels for me."

We left town this weekend so I didn't update the blog. Sorry, faithful readers :)

Friday Esias was evaluated by the Early Access people. She was here for over two hours asking questions and watching him play. He qualified for services based on his health problems and his level of developmental delay. So we will make a plan for service with them in the next couple of weeks and be visited by the occupational therapists, speech therapists, and maybe physical therapists. Tuesday we will get a call from the GI department to see when they can schedule the tube insertion. We're hoping it's right before Thanksgiving because my parents can take the girls that week Thur-Sun and that would be a good chance for us to get used to everything new.

Esias has handled the cold/virus like a champ, but we have been concerned because he is not eating well right now and is not having very wet diapers. We used disposables throughout the weekend at my parent's and it was obvious that they were not as wet as they should have been. I think I need to put a call in to the docs tomorrow. He's refluxing quite a bit too and has spit up a little more than usual.

If I am tempted to get overwhelmed with any of these details, I think of my friend Jenny, who has 13 children, some of them biological and some of them adopted, lots of them with one special need or another, and she just found out she is pregnant with #14. She is truly amazing. She is calm and serene and relies on God for her strength. She recently shared in her blog posts that she used to feel overwhelmed with life, but that it's a choice and she now chooses not to. I like that. I think I'll make that choice too!

Want the good news first?

We have a full-fledged walker on our hands! He is getting braver and now will attempt to walk without being prompted by us and is walking across the whole living room, even from the dishwasher to the front door without help and without falling! Way to go buddy.

Second bit of good news. We are getting the tube soon. What??? I thought you were upset about this, right? Well, we've done some thinking and praying and I know that this is best for him. Today he had another bad choking episode after a full feeding that seemed completely "normal" to me. So that tells me that even when he is not coughing during the feedings he is aspirating. And that is just not a good way to live. So tube it is.

I called the Peds. Spec. Clinic today and talked with the GI doc, Dr. Padrangi. She is awesome. She talked to me for 10 minutes or more and told me all about what she and the other docs had discussed and how they think the tube is best. He may still have to have another procedure especially if his reflux increases after the tube placement, but so far we don't think that will be the case since he is not a kid who is laying down all the time. It looks like this will be happening before the end of the year, and I am hoping before Thanksgiving. For insurance reasons, it will be good to get it done before the end of the year, and for his sake, let's get this kid some air for pete's sake.

Ok, so the actual procedure is done in the endoscopy room at the Peds Clinic where anesthesia comes to us, so we don't have to have an OR and be at their mercy and schedule. It's a similar situation as when he had his first bronchoscopy (the flexible one). They will place a PEG tube first endoscopically (sp?) and then after a few months of healing they will replace it with a button. The PEG tube has a long tube that sticks off of his body so that's not ideal but they have to do that first in order for it to heal in the right place. Then the easier one can be used.

As far as time lines go, Dr. P. said that in six months time, we can do a repeat swallow study and see if anything has changed. If not, we keep the tube. If it has, we leave the tube in place but start to feed orally again. We will leave the tube a good 2-3 months after he is taking all food orally just in case. So this might be in for a while.

She talked about doing slow feeds over time instead of the normal empty stomach, fill it, etc. So he may be taking some food overnight, etc. I am not sure. We will get up to speed on all of this soon I'm sure and it will feel like second nature!

Thanks for your prayers and concern. Esias is a blessing and is perfect in every way. God knit him together in his mother's womb and God is a rock star knitter.

And just so you know how we Grimeses roll, last night Dan said, "I can't wait til he's like a line backer or something and he just smashes some guy on the field and then is like, 'wait, I gotta get some gatorade!' and pours it down his feeding tube! That'll be awesome." Ah, my family.

Elly just referred to Dan as my "in-love creature."

Elly also made up a song (she makes up lots of songs). It goes a little something like this:

I'm black too.
I'm black toooooooo.
I just can't take it any-mooooooore.

She has been so fun lately!

Today we had Esias' follow-up swallow study. It did not go as well as I would have liked. I was hoping to hear, "He's doing so much better than last time we did this!" but instead I watched on the little screen my son aspirate time and time again. Thin liquid, honey thick, etc. Every thickness penetrated (went past the plane of the airway entrance) on each swallow and about every third swallow actually aspirated (went down the airway). This was the same or worse than last time.

I talked in length with the Speech Path. guy. His suggestion is that we get Esias a feeding tube. He says it is just too risky to put food in him through his mouth. I was really really hoping we did not have to go this route--being told in the past that this was the "worst case scenario." I said, "So the risks of aspiration are pneumonia...lung damage?" and he said, "And death." Oh, well I guess I'm ok with it then! Basically, anytime he chokes, he is in danger or not having enough air. He chokes bad enough to turn blue maybe a few times a month. We don't give him anything like cheerios or crackers at all because he always chokes on them. All he can eat is thick thick foods. The SP guy also suggested that in the meantime, while we wait for GI to make the ultimate call on the tube, we can only feed him yogurt thick formula and foods. So at least that takes the guest work out of how thick to make it.

I have to admit, I cried about this this afternoon. I did not like this idea one bit. But I talked to my mom and she (having bad asthma) said to me, "Just do whatever you have to do to help him breathe. It is horrible to feel like you can't breathe." That really helped me put it into perspective. This is not something these docs would recommend unless it is necessary, and the risks of the tube are greatly outweighed by the risks of him aspirating.

We were also told to expect this problem (the feeding problem) will not be solved in the short term. We are to be prepared for a (maybe) long road ahead trying to get him where he needs to be with his oral development. I'd appreciate your prayers for Esias and his feeding challenges. All I keep thinking is, how do I send a kid to school with a feeding tube? Getting a little ahead of myself, I know...