In His Grip and By His Grace

I read a fundraiser letter today for Cobb Pregnancy Services.  The person ended her letter with "In His Grip and By His Grace."  I liked that so I'm using it today to blog about the latest with Ethan.  Things are happening fast!

First of all, good news, he weighs 16 pounds 12 ounces (or so).  We are on a rigid feeding schedule every 3 hours, but it is working so I'm commited to it for now.  I even got us up at 4 this morning so we don't have to skip a feeding today because of a doctor appointment.  Yawn...but EVERYONE tells us the more Ethan weighs, the stronger he will get.  Come on 17 pounds!!  That was the goal for him by 9 months, and that deadline is fast approaching us on Friday!

We did see Dr. Williams last week.  He is putting Ethan in a STARband helmet.  You can see some amazing, sweet pictures at http://www.starbandkids.com/.  Some of the before and after pictures in the documentation makes me realize just how much this will help Ethan.  His head shape is so OFF because of him laying on his side so much to eat.  And that fights with his torticollis because he now has a flat spot and that is where his head automatically falls unless he is "on" and is holding it a different way.  Unless we position him just right, he sleeps on that flat spot...which just makes the head shape, neck muscles and possibility of surgery worse.  We DO have surgery scheduled for the middle of June.  However, his therapist is really excited about getting him in his "motorcycle helmet" and seeing what we can accomplish between now and then.  The doctor is fine with cancelling surgery if it isn't needed.  He would prefer that, too!

This is a picture of something similar to what Ethan will be wearing.  My first thought when I saw this is "ast least the little boy doesn't look MISERABLE!  He will have to wear the helmet all day, every day except for maybe an hour (for bathing and some of his therapy).  Please pray for God's grace for little Ethan (and for us).  He has to sleep, eat, watch t.v., play in this helmet and his neck muscles are NOT strong enough yet for him to hold his head up.  He is going to have quite an adjustment!  The therapist says this will help strengthen his neck, but he already works so hard...I'm just a sad Mommy today thinking about this next phase.  Glad they have this kind of thing to help, but sad nevertheless...

In His Grip and By His Grace...we can do this!

We did get the boys' hair cut on Saturday.  Jerry Potts from Bass Hair Salon made a house call and trimmed their hair.  They both did really well.  Colin had less patience and really just wanted to know what Jerry was doing.  When we held his head still, he got "sad Colin face" so we only trimmed around his ears.  We owe a huge thanks to Jerry for helping us out!

No news = good news!

There really hasn't been much new to report...and I am thankful!

Colin is growing, growing...and is really wanting to crawl.  He gets on his hands and knees and rocks...then does a belly flop and "swims."  Allen and I can't wait to get him in the pool and let him splish-splash!  He surprised us both this weekend by yelling out his first word.  Mama!  Allen and I are both shocked...everyone said they would say "da da" first and they've both said "ma ma" first!  I am working with them both so they will hurry up and add "da da" to their words!!

Ethan is, well, Ethan.  He has a head FULL of hair.  We are trying to figure out someone that can come here and give them both a trim (nothing drastic, just really to shape it up so they don't look scraggly).  He jabbers and has the sweet, soft voice.  When he says "ma ma" it is hard to get anything else done but just talk back to him...and smile lots!  He is still very unpredictable with the throwing up, but he is ssslllooowwwlllyyy gaining weight.  It seems like he was stuck at 15 pounds 12 ounces for days.  Now the number is 16 pounds 3 ounces.  We are taking him to the cranial-facial doctor Thursday.  He should look at Ethan's head shape and his torticollis and make some recommendations on treatment.  His physical therapist feels sure they are going to recommend a helmet.  All I can think is "what else can this child take?"  I am so thankful that God's grace is sufficient.  I don't know how much more this mommy can take!  He has made some GREAT strides with his torticollis in the past few weeks, so I am really hoping to avoid any extreme treatment (like surgery or a brace) for that.

So things are probably just pretty "normal" for us right now.  And that is a good thing!

The doctor said "I don't know why you are here!"

I took Ethan to see Dr. Rastegar, a cardiologist at Sibley Heart Center, today.  We were referred to him by Ethan's pediatrician AND his pulmonologist.  They wanted to make sure his pectus (sunken chest) wasn't affecting his heart (and lungs, but we won't know that until later).

We walked (Ethan strolled) into the office.  It was so calm and quiet - there were only two other families in the waiting room.  We were called back and the nurses took Ethan's history, blood pressure, measured the oxygen in his blood, did an EKG and weighed him.  They were both ssooooo sweet!

They put us in Room 1.  30 seconds later, Dr. Rastegar came in and said "I don't know why you are here!"  I had NEVER heard such sweet words in one of Ethan's doctors' offices before!  He does want to do an echocardiogram in a year just to make sure everything is still good.  But...he said "Ethan's heart is perfectly normal.  His heart rate is good, blood pressure is normal...there is nothing I can do for you."

I came home and wrote the office a thank you note.  It was such a pleasure to be in an office full of warm, caring, CALM people...and to know they won't be one of our regular offices!  I was almost sad!!

Colin is really growing.  He is sitting up and playing as I am writing this.  If he topples over, he just rolls onto his tummy and keeps playing.  He has been really vocal the last few days...still just babbling, but I think full sentences are coming soon!  HAHA!

Ethan is in his Nap Nanny next to me on the sofa.  He just finished eating about 30 minutes ago, so still has a little "quiet time" before I get him up to play.  We changed his formula this week and I think we are seeing some improvement.  He is still throwing up, but not as often and not as much.  As I started typing that, he spit up a little, but I will take it!

Everything I know, I've learned by being a Mom

Seriously, I think I am pretty smart.  Mom and Dad did a great job...I think I have a good balance of book knowledge, people skills and common sense.  I say all of that without pride...because all of a sudden, I wonder where all of those "smarts" went?!?!

When it comes to being a mother, I have a lot to learn.  For instance...today we took Colin and Ethan to have their Spring/Easter pictures made.  I took a ton of stuff...toys, changes of clothes, Easter baskets, etc.  The reality is...we had about 10 minutes of "good" time...but not the same 10 minutes for either baby!  When the photographer first starting shooting, Colin was smiling and talking.  Ethan had his serious face on wondering "where the heck am I and what is going on?"  Then about the time Ethan got comfortable enough to smile, Colin went into FULL meltdown.  Tears streaming down his face and everything!

Turns out, he was STARVING.  This mother had forgotten to check the schedule before we left or I would've KNOWN he needed to eat BEFORE we left!!  Oh well...in the end, we got some cute shots.   My biggest SAD for the day is that we didn't get one of both boys smiling at the same time.  At least now I have a goal...it is good to have goals, right?  Maybe when the boys are, what...8?, I can get a picture where they are both smiling?  Just promise them an ice cream or new game?  Can't do that with 7-1/2 month olds!!  Boy do I have a lot to learn!!

It's a "good" Friday!

No, it isn't Good Friday yet...but my dad always says "every Friday is good."  Today has been a really good day for me in some ways...and sad, too.  I always like to talk about the bad news first and end with the good news (Mom, did you teach me that?).  It has rained most of today and I am thankful for the rain.  But I have been sad today...missing sweet Julia.  I can even hear her voice in my memories and just wish it were out loud and she was sitting right here with me!  I guess that is what grief is but today caught me off guard.  I wasn't expecting to just feel so sad.  I think maybe I just wish she could see (and I guess she does KNOW) the boys - how much they are growing and how good they are doing!

Colin is watching me type.  He is in his exersaucer and pretty much "done" with it and wishing for my attention.  Give me a few more minutes, pumpkin!  He is almost 20 pounds and is really trying hard to sit up on his own.  He does pretty good until something distracts him and then he just falls right over!  He is also wanting to be on the move.  When he has tummy-time, he gets his arms and legs going and I just KNOW that as soon as he figures out crawling, there will be no stopping him!!  He has always had this wonderful really big smile that lights up his whole face.  I hope he ALWAYS has that great smile...and lots of reasons to use it!!

Ethan is on day 9 of having a g-tube (a tube in his tummy instead of his nose) for his feedings.  The throw-ups are still happening, but less often and if they do happen they are (most of the time) not as much.  That is so great!  We weighed him today and he is 16 pounds.  I'm really excited about that because it means he has gained in spite of all of the throw-ups.  He is still sleeping A LOT, but I am hoping that is just because he isn't getting all of his calories and/or maybe just doing some serious growing!  He is strong enough now that he reaches and grabs his toes on his own.  And hallelujah, he has even started SUCKING his thumb and chomping on his pacifier.  He still doesn't really want any formula in his mouth, but the sucking and chomping are really good progress for a week!  More, Lord...please!!  He has lots to smile about too...I think he is REALLY glad to have the tube out of his nose and throat and the tape off his face.  He seems to be talking more and his voice is stronger, too.  These are all great things and I am so thankful!!

Ethan has no more tape on his face!

Ethan had surgery on Wednesday, March 3 to have a g-tube (PEG) put in his tummy.  He is quite our little trooper.  The anesthesiologist was very concerned about Ethan's low tone and how he would react to being put to sleep.   She warned us that he might have to be on a ventilator and/or oxygen if he was slow to start breathing on his own.  I think that took all of my focus off the negatives of the procedure itself - all I was focused on was him waking up and breathing on his own!

She came in and said "he did perfect!"  He had zero problems and I was so relieved!  It was a while before we could see him.  They kept waffling from bringing him back to his pre-op room or waiting for us to see him when they got him to a room.  Thankfully they brought him to us in pre-op and he looked so good!  I pulled his little (purple, much to Allen's dismay) gown up and looked at the PEG...it wasn't NEARLY as "bad" as I was expecting.  I was sssooooo relieved.  It does stick up a bit more than I was expecting.  They equate it to getting an ear pierced - the skin around the tube will heal and it won't hurt him at all.  Right now, it is still pretty tender and hard to clean, but we are doing our best to follow instructions to avoid anything gross.

We ended up on the surgical floor and not on the G.I. floor.  I was disappointed because Shana Owen was working and even if she wasn't our nurse I knew I could count on her help.  However, I have to say that we have 3 really wonderful nurses. The first nurse was my least favorite and she was still great.  Because of Ethan's neck problems, when he was laying in his crib he was facing the wall away from us.  We got permission to turn him around and it was so much better!  He could see us from his bed and I think he felt better.  I felt better because I didn't constantly have to stand next to his bed!  The night nurse and the nurse we had Thursday were just awesome!  They were pleased with how well I was doing with the g-tube.  Apparently, LOTS of parents have regrets and don't want to handle the tube.  I am not like that.  I wanted to learn and do as much as possible so I don't have any surprises here at home!

Things are going well.  Ethan doesn't really seem to have any pain.  He is tender when I have to move it to change his diaper or clean around it, but he still doesn't cry.  The hardest part now is that he is not getting nearly the amount of calories he needs.  We have to build back up to the quantity...but the main thing is for him to manage his feeds (or not throw up).  He went for almost 24 hours without throwing up but then had a really bad episode after his 1 o'clock feeding this afternoon.  He is eating now and I am on pins and needles although I laugh at myself for being so anxious.  He either will or he won't, right?!  He has thrown up so much...I just hate him having to go through this.

The best part is being able to see his whole face and his sweet smile with no tape!  This picture was taken Wednesay afternoon after surgery.  He was being really cute!

Ethan is getting rid of his NG-tube, but at what cost?

I've been saying for months that I can't wait for Ethan to be DONE with the ng-tube.  Well, I'm getting my wish...but not really.  On Wednesday, his G.I. doctor and a surgeon are going to put a G-tube into his stomach.  Allen and I did NOT make this decision lightly.  Ethan has beautiful clear skin and the last thing I want to do is put a "boo-boo" on him that will leave a scar.  Mom told him the other night "you are going to have two belly-buttons" and that just makes me sad.

The deciding factor last week was that his G.I. doctor, his regular pediatrician AND his speech (feeding) therapist all agree that Ethan probably will make better progress eating by mouth if he doesn't have the tube on his face or down his throat.  All also agree that getting rid of the oral aversion will most likely be a long, slow process.  So my idea of taking out the ng-tube this weekend and "getting him really hungry" wasn't a really popular idea with anyone.  We certainly don't want to take the chance of dehydrating him three days before surgery.


Allen and I also read a lot of parent blogs about similar situations.  Most agreed that the positives outweigh the negatives of having a g-tube put in.  The postives for me are no more tape on his face, no more risking putting in a new tube and scratching his throat, no more watching him spend so much of his awake-time swiping at the tube and tape, not having to answer questions from strangers, being more mobile (we SHOULD be able to feed him faster and easier with the larger tube), and the best thing is that we SHOULD be able to hold him while he eats now.  For months we've had to put him in the nap nanny or prop him up on a pillow and watch him eat.  The negatives are...well, the anesthesia is probably the biggest concern at this point.  The anethesia people really reacted badly to Ethan having low tone.  The almost worst case is that he has a bad reaction to the anesthesia and they have to reverse it or keep him on the ventilator and/or oxygen longer than just for surgery.  Ethan will be in pain for a few days.  While he is in the hospital, he will be getting morphine and then he comes home on Tylenol 3.  Pretty strong medicine for a 7 month old.  I guess for Mommy, the worst lasting thing is that there will be a hole in my baby's tummy with a tube the size of a McDonald's straw hanging out of him.  It will be hidden in his clothes, but it will be there and we will know it.  Oh, and another negative that remains to be seen...a lot of times reflux gets WORSE before it gets better with the surgery.  I am holding onto the hope that eventually getting the tube out of his throat (and tickling his gag-reflex and holding everything open) will allow the reflux to get better.


I am so grateful that there are options.  I keep trying to reason with Ethan.  "If you will just eat from a bottle, WE won't have to go through this surgery."  So far, he is still resisting.  I love his stubborness and I hate it at the same time.  I think Ethan has come so very far with his strength and development...further than I thought he would be at 7 months in a way.  So I am glad he is stubborn and fighting for that.  From the very first time I heard the words "oral aversion," I was told "you don't want that."  They were right.  I don't want that at all.  I still remember the first time Allen got Ethan to suck on his pacifier in the NICU.  And the first time he finished a bottle.  Those were sweet milestones for a baby that had no suck reflex when he was first born!  Now we just need for him to remember how to suck, to want to eat, to swallow like he is supposed to...well, you get the idea.


I got sad today about something kind of trivial.  I was taking video of Colin in his new jumpy-toy and thinking I wish I could take video of Ethan in this thing.  Then is dawned on me that Colin gets the pictures and videos of his milestones...and Ethan gets blogged about.


So to say a few words about Colin...he is doing so great.  We switched his schedule around yesterday and he took it like a champ.  He went to bed at 7:30 last night and I had to wake him up at 7 this morning.  We were late tonight getting him in bed because of baths, but he went right to sleep.  He loves solid foods and actually I think would rather EAT than DRINK now.  His favorite combination today was oatmeal, mashed avocado and mashed banana.  He even squealed a couple of times during that meal!  Oh, and he got to go with Daddy twice today to run errands.  He was so cute but came back both times passed out in his car seat.  He takes after Mommy that way...I love sleeping in the car!