I’ve had several people ask, so here’s a little update on Apollo and his g-tube. It has been extremely painful for him, and he was pretty much miserable until he began antibiotics over the weekend. His g-tube site is just being a bit more stubborn than most when it comes to healing. Personally, I think that  Apollo’s poor sleep and constant hunger lowers his stamina and is making it harder for his body to heal.

I’ll be honest and tell you life is very rough over here right now. I have added four hours of tube feeding to my list of things to do each day. Apollo is tube fed at: 7:00, 11:00, 3:00 and 7:00. I clean the site after each feeding which brings on screams of pain from Apollo. He yells, “Stop please!” and “Owwwiee” the whole time. He’s an exhausted, sobbing mess when I’m done.

And, of course, life for my other children hasn’t stopped. Tuesday I had to drop Adalia off where she milks cows at 8:15…when she was done, I picked her up and drove her 20 miles in the opposite direction to fill out paper work for her community college classes in September. I came home and had an hour to get Apollo packed and ready for his appointment in Bellevue (2 hours away). I needed to pack lunches for all of us going (Me, Tilly, Hezekiah, Tucker and Apollo), normal toddler stuff,  plus  Apollo’s pump, formula, antibiotic, etc.

We left at 11:30 for a 2:00 appointment. Then we went to the LEGO store then arrived home about 6:30. This was the day after I packed up all 11 and headed to the zoo after Apollo’s 1:00 appointment in Seattle. Yeah, it’s busy and crazy.

His feedings are no problem when I’m at home. But between his doctor’s appointments and ten other children in the home we can’t always stay home. So far I’ve tube fed him: at the zoo, driving down the freeway, in the mall and at Costco. It makes life interesting, to say the least.

When I weighed Apollo he had gained four ounces in the ten days since having his tube placed. Not exactly a number to jump for joy over. He’s gained a total of one pound seven ounces since his double aortic arch division two months ago.

The new accoutrements of our life. A pump, IV pole, syringes, bags and a month’s worth of high calorie formula.

The worst part for me has seen the pain this is all causing Apollo. Saturday before we took him to the ER he was bent over in pain. I couldn’t hold or move him without it hurting. He would wake in the night crying out in pain. That part is taking its toll on me. It is so painful to have the site cleaned. Sometimes I wonder how much pain I can watch him suffer through. It’s been non-stop surgeries and procedures since December.

I’m pretty sure once his site heals, I’m going to love the tube. There is certainly a comfort in knowing he is being fed. Now that he is on antibiotics for the infection, he seems to have more energy. He seems happier. He sits and eats at meals better than he ever has in his life- probably because he is no longer starving and frantic for food. We are also able to give him all of his medicines through his tube…sometimes even when he’s sleeping, which is awesome!

I keep reminding myself that the tube is to make life better, not easier. Apollo is now able to get the calories he needs…without burning them to eat and breathe at the same time. Sometimes, between meals, it is easy for me to forget that his anatomy isn’t fixed…His eating issues aren’t fixed, he just now has other options. Then I sit down to feed him food and it all comes rushing back. He still has trouble swallowing. He still refuses most food. It’s still a struggle. Every single day.

Well, I spent Hezekiah’s actual birthday in the hospital with Apollo, but one week later, we hosted his party. Hezekiah had only a few requests: a pinata (because we have all that candy from Grandpa and Grandma), his friends and ice cream.

Oh, and a trip to the LEGO store.

The party was a bit crazy…scheduled at 3:30 (when Hezekiah’s school friends could make it) right when Apollo needed to be tube fed. His infection was brewing, he was in pain and nervous will all the “strangers” at our house. I had no choice but to sit and hold him the whole time he ate, so the party when rather late.

The guests were remarkably understanding. The whacked the pinata, ate ice cream, and gave gifts.

Hezekiah did have male guests too…they just weren’t posing for photos.

And Hezekiah was happy too…but I was busy juggling a sick toddler, my camera and hosting a party, so this is what I snapped.

And the trip to the LEGO store happened too, since Apollo had an appointment not ten minutes from the store (and two hours from our house). I took two of my handsome boys along and we hit the mall after his appointment.

You may also like to read about: Hezekiah’s 6th Birthday, Hezekiah’s 5th Birthday, Astronaut Training Camp (his 4th Birthday), Hezekiah’s 3rd Birthday.

Thanks to Walgreens for underwriting this post. I was paid as a member of the Clever Girls Collective, but the content is all mine. Visit http://www.discoverbeautywithin.com/.

I’m not much of one for make-up. In fact, I don’t wear any. Ever. Natural beauty to me is being clean

Adalia, however,  is very into making her own beauty products. In the past she has made: lotions, body scrubs, toothpaste, hair and nail treatments and more. It’s not uncommon for me to have to step around bottles of homemade concoctions to in the shower.

Her current routine consists of: washing her hair with just conditioner (she says its better for her curly hair…and prevent’s frizzing), rinsing with a softening rinse she’s made herself (from a combination of borax and herbs). She then uses a body scrub made of sugar, spices and vegetable oil to exfoliate her skin and leave it mosturized and smelling good. Sometimes a little too good…like the time she used sesame oil as a base and I desperately craved Chinese food every time she walked by…really.

Using books from the library, she’s learned to mix natural products, such as olive (or vegetable) oil and bee’s wax. Everyday products (such as witch hazel and glycerine) combined with essential oils and herbs to make beauty products that improve the quality of your skin, rather than just covering up blemishes. It’s easy on the pocket book too.

Once a month Adalia uses a hot oil treatment (or even good old mayonaise) to keep your hair shiny and healthy looking. She has used a mixture of borax and dried herbs to create hair softeners. It’s supposed to restore the luster and volume to her hair.

She doesn’t make all of her own products though. She’s a huge fan of EOS Lip Balm, which is 95% organic and 100% natural.

Me? I pretty much stick to sunscreen if I’m going to be at the beach and call it good.

Just a quick update. Apollo has been in a lot of pain since having his g-tube placed over a week ago. He was taking Tylenol every 4 hours day and night. He would have a couple of hours between doses when he felt well and played, but by 3.5 hours he was in pain. Wednesday he fell down outside and landed on his stomach…Thursday the area was red and oozing some white stuff…I called down to Children’s first thing Friday morning and they decided they needed to see him so we made an appointment for this afternoon.

By Saturday, the oozing was much more copious and turning yellow. And he was in a lot of pain. We decided waiting another 36 hours (until our Monday appointment) was not an option. After calling Children’s and talking to the GI doctor on call and our local doctor, we headed to the local ER.

The site is infected and we were sent home with antibiotics.

Sunday morning (after only one dose of antibiotics)  Apollo woke up feeling good…and wanted to walk up the stairs (he hasn’t walked up the stairs in months…between trouble breathing and low energy from lack of nutrients, he hasn’t wanted to tackle it). He had a great day yesterday and things look much better. In fact, I expect at today’s appointment they will look at the site and send us on our way.

So we’re making a day of it. The sun is shining. The skies are blue. And the zoo is only ten minutes from the hospital.

Sweet little Carese was under five pounds when she was born! Long and lean like the rest of her family.

I love her intent look as she gazes up at her mama.

Carese is number 12 in this family…there is no lack of loving arms to hold her in this house!

Yesterday afternoon I got to go meet my dears friends’ sweet little baby, Brenna.

I could barely put her down long enough to take pictures. She was just so sweet and snuggly!

Many more photos to follow, I promise. But for now, I have my own sweet little ones to tend.

Apollo had his pre-op appointment Thursday, May 3. My groovy parents drove Apollo and  me down to Seattle so Chuck could drive our vehicle down after work. Meanwhile, Chuck’s nifty parents were watching our hoard of adorable children. Oh, a few were at friends’ houses.

My parents finally got to see Apollo’s home away from home. The hospital where he spends so many of his days. Pre-op went smoothly and my parents drove us to the hotel where we were spending the night.

They left and Apollo and I settled down with Shrek to wait for Chuck to arrive. He called a few minutes after six to tell me he was just walking out the door…”Um, what door?” I asked. Never mind that he has been getting of work at 3:30 or 4:00 lately. This day everything that could go wrong at work did. And more. So I now I had two plus more hours in a hotel room alone with a crazy toddler. Then I realized he only had an hour left before I had to cut off from solid food (because of surgery the next morning).

Now I had less than an hour to walk to a nearby restaurant from my hotel in Seattle and feed Apollo..with a toddler and no sense of direction. I knew I couldn’t lose sight of my hotel or I may never make it back, so walked to a nearby mexican restaurant…Apollo loves rice and I figured that and the beans would fill him up. Only he wouldn’t eat a single. bite. Not to be discouraged, I hurried back to the hotel where I figured I would buy him anything in the coffee shop that he would eat. Only the coffee shop closed at six.

So we headed up to the hotel room where he refused to eat: a granola bar, a Clif Bar and baby food. Basically all the food I had packed. I did manage to get him to eat 4 animal crackers. And that was the last meal he ate for over 36 hours.

Chuck finally arrived just past eight and we spent a horrendously horrible night in a lovely hotel. Apollo couldn’t eat or nurse or sleep. And we were tired. And miserable. And we got in a fight. And then we made up. We told Apollo he was getting a tube put in his stomach (we had been looking at pictures and talking about “little boys who eat through their tummies” all week). And he was very upset. And scared. And we had no way to console him.

Coffee, surgery beeper and parent passes. The symbols of our new life.

Finally, finally it was time to head to the hospital. After two surgeries and two procedures that required anesthesia in the last five months, he knows the drill. And doesn’t like it.

It wasn’t until we were talking to the surgeon that we were told Apollo wouldn’t be able to eat or nurse until the next morning. And we had consoled him by telling him he  could eat and nurse after he woke up from surgery…

Finally they took him back. Half an hour later the surgeon told us all was well. The procedure went off without a hitch (there was some concern about whether or not he would be able to pass the tube through his compressed esophagus).  And we now have glossy photos of the inside of his esophagus! We were then called to go wait in his room.

While we were there and the nurse was typing his info into the computer, her phone rang.

“I’m right here with his parents…let me ask.”

Then she turned to us and asked, “Does Apollo usually make a squeaky noise when he exhales?”

Terrifying words to parents of a child with chronic respiratory issues. We assured her that he never makes noise when he exhales (only on inspiration).

“Don’t worry,” she said. “They’re just going to call the anesthesiologist back in to look at him”. 

Worry we did. Especially remembering the “difficult airway” sign they posted on his crib during our last visit.

After an excruciating hour of worry, he was brought in to us. Asleep and making horrendous noises as he breathed. Standard protocol for Apollo post surgery.

And he spiked a fever again. Just like he did last time he had anesthesia. His little system, it seems, can only handle so much. This time there was no shaking or vomiting, but his fever was several degrees higher. It was a mixed blessing. Because of his fever, he never really fully woke up until late evening, so he wasn’t asking for food.

Apollo was in pain and miserable. I wondered if we made the right choice. It seems so weird: a feeding tube for a kid who can eat. And it was so big. And so long-term. And the evening and night dragged on and on and on and on. And it was terrible.

And then morning came. Apollo’s fever went away. They put pedialyte in his tube. He was able to nurse and eat Cheerios. He was in pain, but morphine helped.

This is the only picture I have of his tube so far…

After he tolerated several small tube feedings and we were properly “trained” we got to head home.

I am going to blog about the actual surgery later, for now, enjoy a little update.

These photos were taken two days post-surgery. He is being tube-fed as he eats his lunch. Talk about multi-tasking! We had friends (with a formerly tube-fed toddler) over to give us some tips. Kara commented that she didn’t think she’d ever seen Apollo eat without crying or be relaxed during a meal.

Apollo is still in a fair amount of pain. He cries every time I change a diaper, touch the tube, carry him, etc.  He is also very scared to have it touched. He is just taking Tylenol for the pain and once the three and a half hour mark rolls around he’s hurting. But in between is happy and playing.

Warning: Looking at the following pictures may make you want to have a cute toddler of your own, and/or change your mental picture of congenital heart defects and tube fed children. 

Here Apollo is playing while he’s being fed. Right now each feed takes 45 minutes (and he’s only getting 30 ml…a little over an ounce!) When we were giving him 40 ml he was bloated and in pain afterward. We will increase the amount he is given every 2-3 days as he tolerates it.

Apollo’s pump can be placed in a little backpack and transported around the house.

He has eight inches of tubing sticking out of his stomach, with a huge port attached to the end. Seriously, the thing is ridiculously big. We ordered a belly band (to keep it up against his body) and a friend brought a few over, but right now his stomach is too tender to use them. No running around shirtless this summer…

In three months, this tube will be replaced with a smaller version that does not have the eight inches of tubing connected or the giant port.

Doesn’t he look healthy and beautiful in this photo? You’d never guess his anatomy is all mixed up…

Questions?

Apollo, May 2011

May 5, 2011 was the day Apollo received his diagnosis of reflux…which as we all now know, was only the tip of the iceburg…and here are the words I wrote:

{After the doctor had sent a camera down Apollo’s nose and throat}

Then he told us everything was developed properly, but there was inflammation…he’s definitely in pain and something is causing damage to those areas…he thinks it may be reflux, which is a great starting point. I’m more than happy to have something to try. Apollo and I are now dairy free…

I’m not totally convinced this is the answer to our problem (but happy to have a starting point). For one thing, most babies outgrow reflux by a year…he’s over ten months and still suffering and not gaining weight. Keeping him upright vs. lying down as a tiny baby never made a difference. He certainly spends most of his time upright now…I don’t know, I’d love to think this is his problem and we can now “fix” it, but very discouraged once again by his lack of weight gain. He’s put on less than two and a half pounds in the last six months… and it’s hard to listen to his breathing/crying now, knowing it is indeed causing him pain (verified by the swelling/irritation).

You can read the whole post here.

And by the way, as of today, we have both been dairy free for one year!