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.


Mom said...

My prayers, my tears, my sadden heart this morning cry out to our God for answers. Lord, wrap your arms around my children and guide them, protect them.

Laurie said...

Dear Jason and Tanya- I know that you guys have to make a tough decision. But, God has given you both an exstrodinary gift of understanding what is happening in Eli's life. Now you need to exercise decernment in the decsion for surgery. An interesting insight was written in the blogg in that you stated- "... it is the Dr.s job, but it is our lives. YOu might have to make an unpopular decision.(This won't be the first time, it will be one of many. The scarey part is that it is your first decsion for your son's welfare.) You know your son better than anyone. YOu even knew him intimately in the womb before he was born.
Listen, I know in many ways this is getting want to go home and be a family. It will happen. So I encourage you to use what God has given you. You two will make the right decision. We will stand with you.
Uncle Mark and Aunt Laurie

Bonnie said...

Dear Friends,

It seems so trite to simply say, "I'm praying for you during this difficult time."

Yet, it has been and continues to be my plea throughout the day, as God brings you to mind, that HIS spirit WILL bring you peace about which path to take for Eli.

Indeed, God's peace is a confirmation that we are IN His will. We rest in the confidence that He is truly the Blessed Controller of all things - regardless of our decisions. He alone is the giver of breath and life. While we are grateful for CHCC and medical technology that allows babies to survive extreme conditions, we know our hope is not in procedures and doctors.

May today be the day you experience peace and confidence in which path to take for precious Eli, knowing all the while that he is cradled by the all-powerful, all-knowing God.

Proverbs 19:21 says, "Many are the plans in a man's heart, but the purposes of the Lord prevail."

May God be glorified and people be drawn into His kingdom through Eli's precious life, and our response of faith and peace in difficult times.

Holding you both before the throne of God.

The Favelos said...

Wow. We will be praying for discernment and peace. Such a tough decision. God knows what it best and I pray He will make it very clear.

Love you guys!


Anonymous said...

I was talking today with one of my friends that works in the NICU about Eli and reflux. She said that the surgery is usually a last resort and she hardly ever sees it done. She also suggested that you talk with a GI doctor about it first and get his opinion.
Also in my nursing mind, there are other ways to get Eli the amount of calories he needs.
-You could feed him 30ml every 90 minutes. if he cant handle 60 at one time. (this is just time consuming and not easy, or it not be possible)
-you could give him formula with a higher calorie so he would get the calories he needs in less formula,
- thicken his milk so it will stay down.
i dont know if these things have been tried but they are good to consider.

I will also say that Eli has proven to us that he takes his time to heal and when they tell you 4 weeks it will probably be more like 6 or 7.
Just some things to consider.
I am praying for you guys!

Aunt Cathy said...

Dear Jason and Tanya,
I think I can tell toward which option you are leaning, and I tend to agree with you. But of course, I don't know all the details that you do. Whichever option you choose, you know that our prayers will be with you and with Eli. This is so scary, especially knowing the difference that this decision will make in Eli's life. I applaud your courage (Yeah, I know you don't have a choice--cowardice is not an option!)
Aunt Cathy

Heidi Short said...

Continuing to pray for your whole family.

michele cabiness said...

I know that we have different beliefs, but I strongly believe that as parents we are entitled to have prayers answered for our children. Our heavenly father has trusted you two with his sweet child and he will help you make the right decision.

Along with everyone else, we too are praying for you.

Anonymous said...

Wow! Eli has had so much to battle in such a short time and yet he has defied the odds. We serve a mighty God! May that Mighty God give you the wisdom to make the best decision and to be at peace with that decision. May he lift you up in your time of need and restore your strength. I pray all of these things in Jesus' name.

Pastor Jerry said...

Jason & Tayna,
Helga and I are praying for you. We don't know why we go through these hard times however you do have a whole church family parying for you daily. Keep close to God. Love Jerry

Rebecca Parker said...

Dear Jason and Tanya,
Two things: does Eli have a neonatologist as well as a cardiologist and surgeon? Neonatologists deal with these feeding issues all the time. When I read the part about the 60 cc feedings, I thought, "Wow, that's a lot1" but a neonatologist would know for sure. Secondly, after Megan was born and we were heading for San Francisco for her first eye surgery, I had a feeling come over me that we shouldn't do the surgery. But all that the doctors were saying was that if we didn't, she would be permanently blind. We did the surgery. Two years later, we found out it was unnecessary. I don't think we should go by "feelings" but in that case, I think the Holy Spirit was trying to tell me something. I will be praying that the Lord will give you wisdom beyond understanding.

Anonymous said...

I was researching reflux meds online as my son too has reflux and heart condition. we have a blog , if you are interested. anyway, our cardiac dr refused outright to agree to the nissens or gastro because 'any anaesthetist in his/her right mind would not give anaesthetic unless life or death situation'.

I guess, looking at dates you are past this stage now. I hope things are going better x