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!

The Second Trimester - Pregnant with Twins

So, as promised, about week 14 of my pregnancy the morning sickness (or afternoon/evening sickness for me) finally eased up.  I did continue to have some nausea, but no longer the kind that made me come home and glue myself to the couch and try not to move!  It is making me sad that I didn't journal along the way because I know there are so many details I'll never get back.  Some events are permanently stuck in my memory.  Some time around 12:30 a.m. on Monday, March 16, my heart went into AFib.  Atrial fibrillation is an abnormal heartbeat - some slow beats and some racing.  Overall, my heartrate is very fast.  I was diagnosed in 1994 and the cardiologist had released me since I don't have any structural reason for the AFib nor does medicine prevent epidsodes.  Until March 16, I've always worked, slept, even exercised through my episodes and eventually they resolve on their own.  About two hours into this particular episode, I started worrying that it might affect bloodflow to the boys.  I called my OB-on-call and she said "AFib is EXTREMELY dangerous and you need to get to the ER right away."  I thought she meant for the babies, so we went racing to the ER.  Since the babies were only 16 weeks, they wouldn't monitor them AND THAT IS WHY I WENT!  The cardiologist came in and they tried several different "safe" medicines to try to regulate my heartbeat.  Nothing helped.  They admitted me to the telemetry floor (I think) for monitoring and for administering some different medications that I thought the doctor told me I didn't have to have.  The worst part was that they wouldn't let me eat.  16 weeks pregnant and not even a drop of water.  ARRGGHHH!!  I was on I.V. fluids, but I can promise you they don't help pregnancy hunger!  My "new" cardiologist, Dr. Egoavil, came in later that morning.  He discussed my options with Allen and me...and scared the poop out of me.  Apparently AFib IS dangerous...for ME!  I always knew it put me at risk for having a stroke, but have assumed that since it resolved on its own that I was OK.  NOT.  Ultimately, they ended up doing a cardio-conversion on me.  Basically that means shocking my heart back into regular heartrate submission.  Thankfully they did give me the quick-on/quick-off anesthia and they DID monitor the boys heartrates right before and right after the procedure.  In fact, I woke up to the words "your babies heartrates are normal."  We will always wonder what effect the procedure had on the boys.  I have to trust that, if any, it was short-lived and not serious.  Also, as soon as I woke up, I heard the BOM-BOM...BOM-BOM of my heart at 88 beats per minute instead of 190!!  After pregnancy, I now have a "rescue" medicine that I take as soon as my heart gets out of rhythm.  My episode last Saturday only lasted 4 hours instead of 24 to 36!!  YAY!  Thankfully, I only had one episode while pregnant.  They normally happen about every 5 to 6 months and I am now back under the care of a cardiologist (since I'm OLDER...ugh!).

The rest of my second trimester was fairly uneventful.  I do remember thinking at about the six month mark that I LOOKED nine months pregnant.  Oh well...that feeling was just part of having twins.  I think it was during this time that my appetite REALLY picked up.  If you know me at all, I normally don't eat a lot.  I had trouble eating ENOUGH while pregnant to gain weight AND to get full!  Big Mac's and large portion lunches became a part of my regular routine...anything to get enough calories to gain instead of lose weight.  The further into my pregnancy I got, the bigger my belly got and the skinnier my arms and legs got!  I looked FUNNY towards the end...ALL belly.  But that is a story for another trimester!

6 month check-ups

Both boys had their six month check-ups today.  Dr. Kim walked in the room and said "I am so happy with Ethan's growth!"  That started the visit well...and it really continued.  We spent most of the time talking about Ethan and his overall health.  From his standpoint, he is happy with what he sees (ears are clear, heart sounds good, etc.).  You know, the things the general pediatrician checks.  Then we talked about Ethan's torticollis (the muscle in his neck that is knotted and hard, causing him to have restricted movement to his left).  I told him we aren't really seeing any improvement with his physical therapy.  He gave us the first referal of three...to see a cranial-facial doctor.  They have different surgeries and procedures they can do to relieve the muscle.  One newer procedure is done endoscopically, so we will go see what they have to say.  The sooner we get it fixed, the less of a problem he should have with the shape of his face.  Then we talked about his lack of strength in his legs.  Eventually, we will probably see an orthopedist (second "eventual" referal) to talk about some braces or options for strengthening his legs.  However, he was encouraging about what Ethan is already doing - stretching his legs out straight and holding them up.  He just tends to get "frog-leggy" and lazy...and that is the concern for his development later on (for crawling, walking etc.).  It can also cause problems with his hips.  The third referal was to a cardiologist.  I felt like this one was coming and kind of wonder why we haven't seen one yet (we've seen just about every other kind!).  Ethan has a pectus, or an indention in his chest.  Dr. Kim (and mommy and daddy) want some assurance that this isn't causing any restrictions on his heart or lungs.

So some of the things we talked about today are potentially "scary," but I think it will be good to get the experts' opinions...and hopefully we can rule out or take care of any problems before they become REAL problems.

Colin is just doing great.  His only "problem" is his eczema.  So far, we've had good results using a combination of a prescription creme and Aquaphor.  He is sitting up unassisted although still wobbly. He is also doing really well sleeping, finally.  He is eating solids and loves his new Yummy Spoonfuls green peas.  Someone put on Facebook "he likes them for now!"  I'm hoping both boys will just be good eaters of a variety of fruits and vegetables.  I am not sure I can bring myself to feed them baby food meat, so who knows about THAT part of eating!  We'll figure something out!

The first trimester - pregnant with twins

After the three different blood tests confirmed pregnancy, the next step was an ultrasound to make sure things were physically progressing correctly. We saw a new doctor at the specialist. He was NOT our favorite doctor. He did show us two "black holes" that were the developing babies. He told us he didn't see heartbeats and I about cried...THEN he said "well, I guess it is a little soon." Oh the emotional ups and downs!

On Christmas morning, I woke up about 3:30 a.m. Since I was awake, I went the the restroom. I discovered some bleeding and really had my first moment of absolute panic. I woke Allen up and we talked about it for a few minute. I don't think I went back to sleep at all, but I think by morning it had stopped. I remembered being REALLY sleepy at Allen's Mom's Christmas breakfast...and later my sister-in-law, Nicole, would admit that she wondered if I was pregnant. I couldn't keep my eyes open!

The fertility specialist wanted to do one more ultrasound in early January, but I decided, for insurance and emotional purposes, to see my regular OB (Dr. Bardwell). Allen and I went to the appointment and Dena did the ultrasound and confirmed twins and that everything looked normal. I think we did see heartbeats that day. The very next morning at work, I went to the restroom and discovered I was bleeding. I would say "spotting" but it was, in my opinion, more serious than that. I called Dr. B's office and was told to come in. Dena immediately got me back and Kim Long came in to confirm...I had a Subchorionic Hematoma. Kim basically said that it should resolve itself but she did put me on bed rest until the bleeding stopped. Thankfully it did stop that very night. Oh...and Allen couldn't leave work that day, but we got to HEAR heartbeats! I called Allen and he listened over the phone, and Dena recorded it for us. Oh, what sweet, sweet sounds!

I think morning sickness hit in early to mid January. Thankfully, I wasn't sick at all in the mornings. Mine was more late afternoon and evening sickness! It hit like clockwork about 4 p.m. when I was driving home from work. I had no idea that the motion of the car would make a difference in pregnancy sickness, but oh my did it ever make me sick! And I have NEVER been motion sick before! It was bad when I was driving, but much worse if I was riding. I would get home, change clothes, and sit very still on the couch to see if I was going to be able to eat dinner that night.

I was telling someone this week that the ONLY craving I had my entire pregnancy wasn't really even a craving to me. It was more like a preference. I wanted Mexican food...I could eat it for lunch and dinner almost every day! Even if I was sick at night, I could eat Taco Bell tacos. We jokingly nicknamed the boys Paco and Jose.

We have a nanny!

When it came time for me to go back to work, Allen and I knew what we wanted to do...that was to have someone come to the house and stay with the boys. The original plan was to take them to day care. With Ethan's issues, day care wasn't really an option. Our whole goal with him is to keep him as healthy as possible. That is the main reason we have stayed so isolated from family events, church, etc. I know lots of people are still wanting to meet the boys...and I promise it WILL happen eventually. For now, isolation is our game and health is our goal.

So mid-December, I was in complete denial about needing a sitter or nanny. I guess I thought we might win the lottery and Allen and I could both just stay home and enjoy every minute with the twins! HA. Allen had to do the initial search and he narrowed it down. There was one applicant that just stood out. I won't lie...I was hesitant but I think that was more me than anything about her (if that makes sense). Her name is Kristi. We interviewed her once and then had her over for a second visit. She is young and energetic and has some really good experience with children.

She started on Monday, February 1 and has done really well so far with the boys. I learned during the month Allen was home with them that things are not always going to be done the way I would do them...but the goal is to get the boys fed, diapers changed, Ethan's exercises, play time, and if most of that gets done every day, then things are pretty darn good. I think we've even seen a benefit of having a third adult that is responsible for the boys...she brings a new perspective to daily life. The boys are her job...and she is handling it very well.

While I am not 100% happy to be at work (and neither is Allen), we are relaxed about leaving them with Kristi and know that they are in good hands. Meanwhile, Allen and I are still playing the lottery ;-)

Colin wants a turn

So I've been updating on Ethan's issues. Colin told me today (hehehe) that he wants a turn. We went to see Dr. Dobo at Marietta Dermatology about his eczema. He said it wasn't that bad of a case (he's seen much worse) but infant eczema is tricky to treat because of limited options. He agreed with me to stay away from steroid treatment if possible, so that will be our last option. He gave us a prescription for a new lotion that is safe for infants called Epiceram. Even the copay is YIKES expensive so I have really high hopes for it! We are supposed to use it twice a day and then use Aquaphor at the other diaper changes. So far, we are seeing some fairly clear skin. He still scratches a lot and of course HATES having his nails clipped (and it doesn't help to wait until he is asleep...he is just as resistant then!).

I started him on rice cereal last week and then read that it can cause constipation, which he does NOT need help with, so I did the requisite 5 days then switched to oatmeal. He absolutely slurps it off the spoon (hasn't QUITE gotten the open the mouth wide thing yet). He totally gets the eating thing and it is SO cute!

Ethan and eating

Melissa the speech therapist just left. She brought several ideas today and they seemed to work. The first thing she did was use this tiny little vibrating tool around and then in his mouth. He is teething so he REALLY liked it. Then she put some Just Pears puree on the end and he smacked his lips around that! I tried giving him a bottle and he didn't scream but neither did he suck. So I guess two steps forward and one back for today...but progress. She was happy with how he did today and that is good news.

Update on Ethan - swallow test

We took Ethan for his repeat swallow test last Friday, January 29. This was to see if he can have regular (thin) formula in a bottle. We got him situated in the chair and he was happy and talking. Then we had to WAIT for 20 minutes for the doctor and by then, he was not longer happy. When the therapist tried putting the bottle in his mouth he just started crying. She literally had to put formula in his mouth and force him jaw to make the motions to swallow. They did record maybe 3 swallows and the good news was that he didn't aspirate. The bad news is they didn't really see enough to discharge him. We are working with his regular Speech Therapist to try to get him to "have a good food experience in his mouth." I am NOT excited because we have to repeat the swallow test down the road when he will actively take formula...the little guy has had so many x-rays, I think sometimes he might glow in the dark.

So you PRAY-ERS, please pray against oral aversion and the hypersensitivity in his mouth (I felt of his gums this afternoon to see if any teeth were popping through, he gagged and threw up).

The next few weeks are full of doctor appointments. All of his doctors (pediatrician, neurologist, geneticist, G.I., pulmonologist, ENT and eye doctor) wanted to see him at 6 months. We did get GOOD NEWS from his eye doctor today...the immaturity he saw in Ethan's eyes at 5 weeks has matured and his eyes are "normal" with the exception of his bottom eyelashes grow in towards his eyeballs instead of out. Good grief! So far, the recurring theme is that most of his issues are things "he will grow out of." BOY, are Allen and I ready for that day!!