You know that feeling when you look down and see that your son has pulled out his feeding tube while you've been holding him?

It's not the best feeling I've ever had. 

It happened on Tuesday as I was getting Nate's food ready for his nightly tubular feast.  There he was, smiling, his feeding tube swinging freely from his nose. 

It wasn't totally out, but it certainly wasn't in anymore.  Since it wouldn't do any good hanging from his nose and could be a safety concern during the night {if it were to get wrapped around his neck or something}, we needed to take it out. 

And this is where Handsome meets Hero in my book.  I can't peel sunburns or pop zits, and runny noses {even on my own kids} make me gag.  Needless to say, I was not pulling the tube out the rest of the way.  I held Nate and did lamaze breathing with my eyes closed while Handsome Hero took it out and peeled off the rest of the tape.  Poor kid.  Poor me. 

You'd think this was the first time this has happened.  It's actually the second, and I'm sure it won't be the last.  This time, however, we decided to leave the tube out until Monday and see if we can get some results and maybe not need to have it reinserted.  Who knows?  Maybe he'll gain.  That is a small hope but since the opportunity was presented, we took it. 

It isn't going well.  Nate has yet to eat a single thing, though he is nursing better.  I even tried {on the advice of a friend} dicing teeny tiny bites of avocado and banana and seeing if he would feed himself with his hands. 

He won't.  I even opened his mouth and put a piece of banana inside, and he just gave me a look and popped it right back out. 

Today we had speech therapy with a new therapist and we might have had a breakthrough.  Not a breakthrough as in, "He gets it and now he's eating steak!" but more of a "Oh.  So maybe that's the problem" kind of a breakthrough.  The therapist, who I will call Ashley, because her name is Ashley, noticed that Nate turns his head away from anything coming near his mouth.  He also doesn't like to touch things with his hands.  He holds them up and away {she called it a high block or something like that}.  He doesn't even put them down during tummy time - they are in the air behind him and he holds his head up by using his stomach and back muscles. 

Now, we know he does funny things with his hands - we've always said he looks like he's flying. Just in case it had significance, I have mentioned it to each of the doctors who have treated him, and no one has attached any importance to it.

According to Ashley, these things are indicators that Gater has sensory issues, that he doesn't want to touch things with his hands or have things touch his mouth.  She says that it will take awhile for him to willingly take food into his mouth and that we can expect to be in speech therapy for some time.  She also thinks that eating is just the first sensory issue we'll have to deal with and that physical and occupational therapy are in our future.

*very deep sigh*

Okay, so this is how I feel.

1.  I don't really understand.  What she is saying makes a lot of sense in the way she presents it, but why didn't anyone else catch this? 

2.  It seems like we have several medical professionals, from pediatricians and GI docs to nutritionists and speech therapists, who aren't communicating, or if they are, we have been left out of the loop.  If you were to put all of these people in a room and put Gater's file in front of them and say, "discuss," I don't know if they would agree with each other or not.  Is it supposed to be like this? 

3.  It seems that no one has Nate's full file - I have repeated the same story about twenty times, and it is always new to the person with whom I am speaking.  Why does no one have the pertinent information?  In the hospital, a woman came by three times in one day to check Nate's I.V.  Nate didn't have an I.V.

4.  I'm pretty certain we're putting the tube back in very soon. 

5.  I'm fairly certain Jack's reverting potty issues and Ella's clingy and needy attitude are directly related to Nate's condition. 

6.  I'm totally certain that my constant state of exhaustion and need for a good cry are related to Nate's condition. 

7.  I'm absolutely certain that I hate being in this place of knowing there is a problem but not knowing if it is able to be solved or cured or if it is going to be ongoing.  But,

8.  I'm as certain as certain is that I can rest knowing that the Creator of Nate and One who loves him more than we ever could has him in His hand.

**  I am sorry if this post has been a bit disjointed or difficult to follow.  My attempts at rereading have been interrupted so much I'm giving up and just publishing it. 

Bookpage Wreath

 

With Gater's situation and lots of illness hitting the rest of us, it's been a few weeks since I posted anything about the house, and I have lots I want to share, so here we go.

 

We have this wonderful fireplace with a brick hearth and lots of space above it for something spactacular to be displayed.  It's a great focal point.  The problem?  I didn't have anything spectacular that would work there.  I tried lots of options from among the artwork we've collected through our marriage, but nothing was right for this spot.  Enter:  the bookpage wreath.

 

 

This wreath is very easy to make, but it does take a bit of time.  This one took two movies {that's how I measure time}, but it's very big - thirty inches across!

 

Here's what you'll need.

a wreath form

hot glue gun

an old book

 

Carefully rip some pages out of your book.  I used an old hymnal and it took about 3/4 of the pages.

Fold your page into a cone.  If you'd like a more rustic look, use the ripped side. It comes out looking pretty and ruffly.  I wanted a more modern flower-look, like a dahlia, so I used the top right corner of each page.

Put a dab of glue on the paper to keep the cone closed and then glue the front of the cone to the back of the wreath form.  The picture below is the wreath from behind.

Here it is from the front.

Continue to do this around the whole circle.  Try to make them all the same length, but don't worry about perfection.  It's overrated and your wreath will look better if it has character anyway.

When you've gone around the whole thing, start your second layer from the front.  I aimed for putting my second layer of cones inbetween the first layer of cones, but it isn't exact since the circle is slightly smaller.  I also tried to make each row slightly shorter.  This time you'll put the glue on the back of the cones and press down from the front of the wreath form.  Notice that I glued the inside tips of my first layer to the form.  That way none of the wreath form will show once you are done.

 

Here it is from another angle. The second row is on the bottom right of the picture. 

 

Each layer after that is more of the same.  Every once in awhile, back up and look at the wreath from farther away.  It helps to keep everything even.

The cones just naturally begin to form this flower.  As you get closer to the center, make your cones smaller or it will start to look funny.

 

Keep filling in until you like how it looks.  I debated filling in the wreath completely so it looked more like a flower sculpture and less like a wreath, but Handsome Hero and I decided it looked better this way.

I like the texture it adds to the room, and being up so high, it won't be smooshed by little fingers.

You could spray it lightly with a clear acryllic spray to protect it.  I will probably do this in the spring when I can do it outside and let it air dry.

I think this would be really cool in a kid's playroom or bedroom made out of a kid's book with colorful pages.  Or in a kitchen {out of the range of splatters} made out of an old cookbook.

 

So there you have it.  If any of you make a bookpage wreath, would you send me a picture?  I'd love to see it.

 

P.S. There is no change in Gater.  He hasn't gained weight in 3 1/2 weeks, though we've increased the number of calories he's getting from the feeding tube.  We're doing therapy exercises designed to help him with any aversions he may have to a spoon or sippie cup, but no dice so far.  I must confess to being discouraged, but he's still the happiest little guy you've ever met, and we are so thankful.  He has pulled out the tube once and we had to go to the hospital to have it replaced, but he hasn't tried to do that again.  Yet....  The rest of us are finally doing well, after colds and the stomach flu abounded.  We are so thankful the Lord protected Nate from those things!  Thank you for your prayers.  They mean so much.  I'll continue to update here.



Working on that Crown

Just a quick post to tell you how we've been doing in bullets, because that's all the time I have:

Ella and Jack:

• Ella and Jack got sick on Wednesday last week, Ella with a stomach bug and Jack with a cold.  They both got better in time to give each other their sicknesses this morning. 
• Jack is not as good at making it to the bathroom as Ella.
• At all.
• It's gross.
• Jack has developed a habit of coming to us to go to the bathroom all. night. long.  He comes up many times each night, and we are very tired and run down and unsure what actions to take to stop the visits.
• Even when Jack stays in bed, I have started dreaming that he is coming.  I always think I can hear those little footsteps.... 

Ella convinced Jack he was a dancer.  Just looking at those gloriously plump limbs makes me sigh with contentment.  Nater Gater will one day look like this.

Handsome Hero and me:

• In addition to being run down, I am also sick with a cold that I hope will not turn into a stomach bug.  Handsome Hero is well, as always.  What would I do if he were sick, too!?

Nate

• Nate is doing well with the pump.  He isn't gaining any weight, but he isn't losing, either.
• The cap on the end of Nate's feeding tube needs to be replaced.  It pops out unless it's taped and yucky yellow stuff comes out of it, but the nurse says it isn't dangerous.
• The radiology people said they couldn't just replace the cap {which screws onto the tube} - they have to replace the entire tube, which means a lot of pain for my baby.  They won't say why.  They just say they can't do it.
• The radiology people are about to meet mama bear Lewis.
•  I am frustrated with the radiology people.

• I met with the G.I. dietitian this morning.  She says that Nate needs speech therapy {at Nate's age speech therapy deals with eating}.  She says speech therapy is imperative for his learning to eat. 
• To get speech therapy I need to get a referral from the head G.I. doctor or his nurse practitioner.  The first appointment they have is for over two weeks from now.
• Um, over two weeks from now??  I thought this was imperative!
• At the time of my appointment with the G.I. nurse practitioner in two weeks, Nate will have had his tube for nearly four weeks.  Initially, they told us he would have the tube between four to six weeks total, but if we can't even get this appointment that will enable us to make an appointment with the speech therapist until then, well, I see the elongated writing on the wall.
• I am waiting to hear if my pediatritian can give us a referral.
• I am frustrated with the G.I. people.

The long and short:

• There is no denying we've had a rough time over the last week.
• God is on His throne.  Nothing is happening that He didn't know would happen, and since He loves us more than we could ever love, we can rest knowing that His best is being done.
• While there was not much positive to report this time medically, that is not indicative of our demeanor.  We're loving on each other and helping each other out and still smiling a lot, though it may be through bouts over the toilet or through nose blows.  We've been spending lots of time snuggled up on the air mattress in front of Robin Hood and Monsters, Inc.  Ah, bonding with Disney.
• "Blessed is the man who perseveres under trial, for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him."
• I want that crown. 

 

Have a blessed week.  I'll keep updating as new information comes in.

Home, Sweet Home



We were discharged from the hospital on Sunday evening.  Nate had shown a little weight gain with the feeding tube over the weekend, so they trained us to operate the feeding pump and an apnea machine {it measures his respiratory function while he uses the pump overnight} and sent us on our merry way.

G.G. couldn't wait to get her hands on this cuteness.

Jack used his hammer to help Handsome Hero set up the pole for the formula bag.

 Don't worry, Dad.  I'm here to help.

Ella used her doll's fishing pole.

 A hammer?  Please.  That's just for amateurs.  Now, a fishing pole, on the other hand....

 

Very helpful, those two.  Couldn't have done it without 'em.

 

We're in a sort of routine now.  Nate has to be hooked up to the pump and the apnea machine each night at a specific time, and it is a bit involved, but we're getting better at it.  He doesn't like it much, but calms down pretty quickly.

 

I must think zen thoughts.  I weigh less than a slice of bread.  Ommmmm.

 

While Nate is getting calories through the feeding tube, he still isn't interested in eating on his own.  The forcast is for Nate to use this tube for four to six weeks, and then be reevaluated.  Our challenge is to get him to want to eat solid food and take a sippie cup or something so that he won't need the tube in order to gain weight.  Right now that seems like a tall order, but, again, we've seen it work with Jack, so we know it can happen.

We are so happy to be home and getting into a routine.  It isn't exactly normal, as I listen to the machines whirring in Nate's room, but we're thankful for the ability to do this at home instead of staying for a long time in the hospital.  I am so glad to be home with my family.  And may I say, sleeping on my own pillowtop mattress is a beautiful thing.  It welcomed me with open arms.  At least I think it did.  I was so sleep deprived I may have dreamed that part.

Your continued prayers are greatly appreciated.  Please pray for Nate to begin to desire food.  Also pray that he doesn't take out his tube.  If he does, we have to take him back to the hospital to get it re-inserted, which is painful and absolutely no fun. 

Hospital Adventures

So, folks, here's the update.  We are settling down for our second night in the hospital.  Hopefully we'll be out of here by Sunday evening.  Nate has done remarkably well.  He has a nice, comfy cell crib.

My deluxe accomodations.  This couch-turned-bed is exactly one inch longer than me.

 

I am so blessed to have a baby who is happy even in strange circumstances.

 

He had an NJ tube inserted today that should help him to get the calories he needs. I hated seeing my baby hurting, but it was done very quickly.

 

The tube doesn't seem to be bothering him.  He's able to sleep, though not for long periods because of all the normal interuptions you get in a hospital.

 

He hardly seems to notice it.

 

We are hopeful to be home soon and taking care of this ourselves.  We thank you so much for all of your prayers.  Our new church family has rallied around us with meals and is asking to support us in anyway they can.  Between that and having family near to help, we are indeed blessed.

 

Obviously, please pray that this feeding tube would work and that the extra calories would push Nate over the line from "eating is so not cool" to "eating is awesome.  More please!"  Pray, also, that I would remain healthy.  I am not sleeping well {did you see the "bed"?}, and usually get sick when I don't get enough sleep.  Pray for Handsome Hero and my mom who are holding down the fort and keeping the kids in clean clothes.  Pray for our testimony here to the staff, nurses, and other families.  Your prayers are greatly appreciated.  I'll update here as we know more.