Monday, April 27, 2009


It's time for another technical detail and number heavy post. It's the only way to help you see the whole picture and understand what we're facing. There's a lot to digest here (no pun intended), but it's a necessary evil. First, some terminology.

NG: Nasogastric tube. Feeding tube into stomach.
NJ: Nasojejunal tube. Feeding tube past stomach, into small intestine.
G-tube: Gastric tube. External feeding tube through abdomen into stomach.
Fundoplication. Surgical alteration to remedy reflux.
Reflux. Acid reflux. Stomach fluids in the esophagus.
Bolus Feed. Feeding that is not via constant drip.

Eli needs 60ml of milk every three hours. Previously, he had been matured into this level of consumption. At one time, he actually took an entire 60ml from the bottle. Typically, he would only take about half, and the rest would be put into his NG, so all 60ml made it into his stomach. This is called a bolus feed. Then he got sick, and his NG was lowered into an NJ, bypassing the stomach and eliminating the chance of reflux. When fed via NJ, he goes from 60ml every 3 hours to 20ml/hr in a slow drip, a constant feed.

As he began working past his cold, they brought his feed tube back to an NG, and returned to bolus feeds, but at a lower rate, since his stomach hadn't had anything in it for 2 weeks. They started with 30ml bolus, and he did OK. They told us they'd do a gradual increase up to the 60ml full feed. When we returned the next day, he was back to an NJ and constant feed. They told us they increased his bolus feeds by 5ml every feed, until he was back at 60ml. That means they "gradually" increased his feeds from half to full over 18 hours. He had reflux issues, and couldn't handle the full feeds any more. Hence, the return to the NJ.

It struck Tanya and I as odd that they'd ramp him up so quickly. He's never done anything quickly his entire life, as you all well know. We start doing research and found that the number one cause for reflux is overfeeding. It seemed to us (now, we're obviously not doctors) that they needed that increase to be much more gradual. On the scale of weeks, not hours. The problem is that Eli would starve if only fed half feeds for a week.

To stop the reflux, they want to do a fundoplication, which is a permanent "tightening" of the sphincter at the top of the stomach, so he won't be able to reflux. This strikes both Tanya and I as a rather permanent solution to a temporary problem. The fundoplication is permanent, and has life-long side effects. Primarily, Eli would never be able to burp or vomit for the rest of his life. All babies have reflux, to some level, and they grow out of it. Typically, this happens between the first and second year, but almost every baby matures past it.

As we've grown accustomed, Eli's cardiac condition influences the immediacy for their concern. The primary concern with reflux is aspiration of the reflux... getting the fluid into his lungs. Eli's lungs are currently the most closely watch organ in his body. His heart defects and all his surgeries are based around oxygenation of the blood. Obviously that means the heart, but also the lungs. He is extremely sensitive to any lung damage, inflammation, or irritation. A common cold inflames the lungs, making them less effective, lowering his oxygenation. This is why a common cold sends him to the ICU. Also, aspirated reflux causes damage to the lungs, hindering their ability to oxygenate the blood. Our cardiac surgeon has made us aware, a severe reflux episode could be extremely detrimental to Eli. He's even seen cardiac kids die from reflux aspiration.

We have verified three options with Eli's pediatric surgeon (whose own child had a fundoplication 16 years ago).

  1. Go through with the fundoplication. Remove risk of reflux. His recovery requires he stay at CHCC until second cardiac surgery in June/July.
  2. Continue to feed him NJ indefinitely. Remove risk of reflux. This feeding routine requires he stay at CHCC until second cardiac surgery in June/July.
  3. Change his feeding routine to a mix of NG and NJ. Feed 30ml into the NG, and 30 into the NJ. As his stomach is more ready, change that mix. Continue this until, eventually, his stomach works back to full feeds. Timeline unknown.
The doctors agree that options 2 and 3 would both help resolve the problem, but there is yet another complication. These assume his reflux condition doesn't change. If we were to forego the fundoplication, and he were to develop worsening reflux issues after his second surgery, he would not be ready for the fundoplication surgery until many weeks after his cardiac surgery. This would leave them with very few options to avoid the reflux. In addition, option 2 isn't really an appropriate option. It would require he stay there, because an NJ tube can't go home (an NG can). That means he'd be sitting in a hospital room, otherwise capable of going home, except for his eating routine.

And the final piece of influence.... There must be a 4 week wait between the fundoplication and the second cardiac surgery to allow for healing. With the doctors guessing this surgery to be in June/July, that doesn't give us a very big window to make sure we get the fundoplication taken care of. A decision needs to be made soon. They want to do it this week, if his lungs have cleared out the cold he had, and are ready for general anaesthesia.

So here's the big picture in review, simplified down. Eli isn't handling full feeds, he refluxes. They want to solve this with a fundoplication. They are taking the conservative "cover all your bases" approach. We like the idea of graduating him up to full feeds over time with a combination NG/NJ tube, but don't want to risk his health.

To be totally fair, every doctor we've spoken to supports the fundoplication. But this is their job, not their lives.

Please pray with us, as we're begging God for the wisdom to make the right choice for Eli. We're on our knees as much as ever with this decision.

Sunday, April 19, 2009


When I entered Eli's room this evening, he was asleep. All his monitors assured me, he was very asleep. He always looks so peaceful when he sleeps. Tonight, the only pieces of technology he has attached to him are the little round stickers on his chest, and the tiny feeding tube in his nostril. His hands and feet are free to move, and they're showing few visual reminders of so many different tubes and wires he's had hooked to him for the last two months.

I sit and listen to him breathe. He has such a short breath, but he always does. You can see each breath as his little abdomen sucks in under the ribs. He's so small, you can actually see his chest bump with each heart beat, if he's still enough. The dosing unit for his milk feeds beeps, warning that it will be empty soon. The nurse heads off to prepare another dose. He's getting the good stuff now, boosted with even more calories than before, to help put some weight on our little boy.

He begins to wake up and starts looking around the room. I wonder what it feels like to look at a hospital ceiling and not know this isn't normal. This is the only place he's ever slept. It's been there every time he's ever woken up, his entire life. After a few moments, I pick him up and hold him in my arms. He continues to look around the room, and at me. He doesn't fuss, at all. For a change of pace, I put his chest against me with his head on my shoulder. He struggles a bit. This isn't an orientation with which he's familiar. But he doesn't argue. His monitors don't like this orientation, and they begin with protests of "No Signal." I can see he's absolutely fine, so I silence the alarms and talk to Eli.

As I cradle him in my arms, on his back again, he begins to communicate a little annoyance with me. He doesn't like something, but I can't tell what it is. I change his position, and he's quiet for a while. Tonight, he doesn't have a shirt on, but I'm completely gowned up and am wearing gloves. I've decided I want to touch him, with my own skin. I take off the gloves, sanitize generously, and hold him again, with my bare hands against his bare neck, back and feet. This is my little boy, and it feels nice to hold him human body to human body. I remember the first time I could touch his skin with anything more than a single finger. It was on his back, just like this, a couple weeks after his surgery. I placed my entire open hand across his exposed back and felt his warmth. But it's different tonight. Emotionally, he's graduated beyond a medical miracle to being my son. I desperately look forward to bringing him home and showing him the world. I can still feel a little raspiness in his lungs, as he fights his cold.

I have two very specific goals, based more around my own desires than anything else, but important to me nonetheless. I want to go to a Cubs game in Wrigley Field with Eli. The red billboard out front with scrolling marquee, the brick and the ivy, the 7th inning stretch (even though Harry Carey has long since passed), and the bleachers on top of the apartment buildings beyond left field. To me, this is what baseball is all about, and I absolutely love it. I also want to see the top of Half Dome with Eli. I've never seen it before. I've gotten close. I was in bad shape ten years ago when we tried, and even worse now. Who knows what a train wreck of fitness I'll be in another ten years. But if Eli's heart is capable of making it up there, we will make it to the top.

As the evening progresses, he's becoming more and more agitated. I don't seem to be able to calm him. We change his diaper and try wrapping him in his blankets a little better. Then it becomes obvious... he wants his pacifier or a bottle. He can't have a bottle right now because of his cold, they're feeding him directly into the intestines. I wonder if he has hunger feelings, since his stomach has had literally nothing in it for many days. His body is well fed, but what about his stomach, and the feelings it produces?

He's really worked up a nice, strong cry by this point. The nurse is off to locate a new pacifier, his seems to be missing. I rub his eyebrows while I talk to him. Paige always loved this, and so does Eli. His eyebrows are red like his hair, and a little wild out at the the ends. Tanya and I have laughed that they look like old man eyebrows. The nurse returns with a new pacifier and I offer it to Eli. He immediately takes it and is silent. The nurse gives him his medicines and vitamins, takes all his vitals, all with his complete cooperation.

He's been awake for the last hour, and is starting to fade off into sleep again. As the pacifier movement decreases, so do all the numbers on the monitors. He's fallen back to sleep, looking just as he did when I arrived earlier this evening. I say my goodbyes, wind up his mobile, and head home with the sound of "Lullaby" getting quieter as I head through the halls.

Saturday, April 18, 2009

Paige & her park

Last summer, we found a swing set on clearance, so we bought it. We've been working real hard on redesigning the backyard, so it wasn't until last week that we got the swing set built. Paige LOVES to swing, or "go to the park," as she calls it. Paige finally has her very own park, at home! She'd love to have friends over to play with her, that's for sure! Here are some pictures of her exploring her new park.

Friday, April 17, 2009

Running its course

When Eli became sick last week, they immediately began testing to find out what he had. Thankfully, he was negative for RSV. However, he was positive for Parainfluenza Type 3. His symptoms are congestion and a cough. Because of his fragile state, his recovery has been delayed. We have to wait for the virus to run its course, since it cannot be treated with antibiotics.
In the beginning of his infection, Eli also showed signs of acid reflux. This is common for healthy babies and even more common for heart babies. For now, his feeding tube has been pushed down into his intestine (instead of his stomach) and he is on a continual drip feed. Once the virus is cleared, they will pull the feeding tube back to his stomach and attempt bolus feeds, or large feedings every 3 hours, just as before he got sick. We are hoping the reflux is minimal and can be treated with medications. If the reflux is beyond medication control, Eli may have to have a surgery to minimize it.
Current praises:

  • Eli is stronger and is slowly overcoming his flu virus
  • God has blessed us of 2 months with our baby boy
Current prayers:
  • The virus clears quickly
  • Acid reflux is minimal and can be treated with medications
  • Eli can gain sufficient weight to be brought home
  • Jason, Tanya and Paige have the endurance to continue on the race God has put them on.

Tuesday, April 14, 2009

Cough and congestion

Eli caught his first cold. It started as a cough, and has now turned into severe congestion. For most of us, it's not too bad. For Eli it is. He already struggled enough to breathe, now he is all stuffed up. He has been on oxygen for the past 2 days, when he had been without it for a week. He is very sweaty and fussy, too. They have stopped giving him breast milk and are going to give him IV fluid to keep him hydrated. There is talk of having him intubated again so he can breathe easier, though it has not been done yet.

Please pray with us:

  • that the cold passes without going to his lungs and chest
  • that he can breathe on his own and not have to be intubated again
  • that his feeds can resume and he can begin to gain weight
  • for Jason and I that we are strong and encouraged by any progress, not discouraged by a "simple cold".

Thursday, April 9, 2009

Baby steps

Man. When we don't post, you all let us know! There really hasn't been too much to post lately.

We talked with Eli's doctor yesterday and he said we have basically 2 things we are working on to get him home. He needs to detox and eat. We are still weening him from Methadone and Valium. Whenever they cut his doses, he does show signs of withdrawl (sweaty, cranky, large pupils). Both doses are very small, but he is dependent on them. Cutting him cold turkey could send him into seizures. We must take it slow!
His doctor also thinks he is not eating as well as he should because of the drugs. They cause him to be very sleepy. When he is very sleepy, he doesn't have enough energy to eat. Eli is still offered the bottle at every feed. He'll usually drink anywhere from 10 mL to 25 mL before he poops out. The rest of the bottle is fed through his feeding tube. After the detox, Doc thinks he'll become a better eater.
There are a few housekeeping tests they are doing, just to be sure his body is working properly. They are running tests on his thyroid, adrenal gland, and tummy. These tests are just to make sure they are all working properly. He's been on a lot of drugs for his whole life, so they just want to be sure he is okay without the drugs.
It is still a matter of weeks before Eli actually gets to come home. We just need to take it slowly. As our doctors have constantly told us, "We have to take baby steps."