Wednesday, December 10, 2008


We went to see Eli's GI doctor (Dr. Whitney) today. Thank you all so much for praying! We had a really good talk with her.

Eli has only gained 4 ounces this month, which, of course, is concerning to the doctor. She said, "Slow growth I'm okay with; no growth means we have to do something." So the first order of business is to make sure that there is nothing mechanically/structurally wrong with Eli's digestive system. This is done with an upper GI test, which Eli already had done when we were in the hospital with pneumonia a few months back. So Dr. Whitney will look at those results, which will hopefully confirm that everything is fine inside Eli.

Then we move on to making sure that Eli's throat and mouth feel okay. Dr. Whitney started him on a medicine that will coat his stomach and throat and, if it's a sore throat that's the problem, the medicine will "act like a band-aid" so that eating won't be painful any more. We started the medicine today and will know in a few days if his throat is the problem, based on whether or not he starts eating more on his own after the medicine kicks in.

After we rule out a structural problem and a throat problem, we come to the issue that all of us are convinced that Eli has- oral aversion. This is a common problem with both premies and reflux babies, both of which Eli is. Basically eating becomes so unpleasant and uncomfortable for the baby that he/she just makes up his/her mind not to eat. Any amount of forcing won't help- it will only make the problem worse. To deal with this problem (which is more than likely the issue we're dealing with), we do two things...

1. Feeding tube. Dr. Whitney only uses naso-gastric (NG) tubes, which is a tiny tube inserted through the nose into the belly. This is such a relief to me, because I was convinced Eli was going to need surgery to get a feeding tube placed directly in his belly. The NG tube is much simpler, not painful at all, and can be removed and replaced anywhere, including by me here at home. We'll continue to feed Eli however much he wants to eat by mouth, and then the minute he refuses to eat more, we'll just stop and give him the rest through the tube. This will be in place for several months, until Eli bulks up a little and learns that eating by mouth isn't bad after all.

2. Occupational therapy. We'll go see a feeding/oral specialist who will help Eli overcome the aversion he has to eating by mouth. Apparently this is a slow process which will take several months to overcome, but it is crucial that we work with a professional and not just try to conquer the problem on our own.

Hopefully, after a few months of a feeding tube and therapy, Eli will have gained some substantial weight and will have learned to happily eat plenty of food by mouth. We won't go ahead with this plan until we know for sure that Eli's GI system and throat are okay, so we go back in a week to confirm these things. If, like we all suspect, he's completely fine physically and just orally aversive, we'll go ahead with the feeding tube/therapy plan.

I want to say first that I am so very thankful for such a wonderful doctor who listens so caringly to what we have to say and works so hard to make it better. She is also really calm and cool- she doesn't freak out like I tend to. I really appreciate this about her, along with her positive attitude. She said as we were leaving, "I've never not conquered this!" She says she deals with this often with babies, and it always resolves.

That said, I feel a strange mix of relief and sadness. Relief because we'll know exactly what's going on with Eli- confirmation that he's physically fine. Relief because we'll have a plan of action that will help him gain weight and learn to eat without a fight. Relief because I now no longer have to worry about feedings- they will be calm and pleasant because I don't have to force him to eat any more. Relief because the pressure of forcing Eli to eat and gain weight is now removed from my shoulders, eased by a feeding tube and a therapist.

But sadness because I don't want my baby to be "abnormal." Sadness because when people see him they'll think he's sick because he'll have a tube coming out of his nose. Sadness because he'll have to have tape on his face all the time to hold the tube in place, and I don't want him to be uncomfortable. Sadness because I just want a normal experience for my baby, nothing uncomfortable or unpleasant. All of this is selfish, in a sense, and I know that a feeding tube will be the best thing for Eli, for sure. But still. I'm a little sad.

Please pray that the tests are conclusive and that both the doctor and Eric and I will feel 100% positive about going ahead with the feeding tube/therapy plan. Pray that I'll be able to rest and relax, because now we know what's happening and what exactly Eli needs.

Thanks so much- you guys have carried Eli through his many "issues" with your prayers- from the NICU until now. I treasure your care for our little family!



Tyne said...

Erica, y'all are wonderful parents. What great care and love you are lavishing your little Eli with! I am praying for him and will continue to.

Amber said...

So glad for the quick update - I was definitely praying for you guys today. Whatever happens will be normal for Eli b/c he won't know any different. Above all he is blessed to have God-fearing parents to love and care for him. I will keep all of you in my prayers!!! Eli is so perfect and I thank God for Carson's future friend!

Tricia F said...

Hey Erica, I'm so hopeful with you for conclusive results. And, there is a sweet family that I know who has a boy who has had a lot of similar issues. He was on a feeding tube for a long time but it doing just fine now. I will pray with you guys! And, thanks so much for being so vulnerable on your blog. It's very precious to hear your mother's heart for Eli.

The Coffeys said...

Erica, I always love reading your blog and have enjoyed keeping up with you and Eli! You guys have been doing great with him, and he is so blessed to have such a caring family, with many prayers to carry him through. I will continue to pray for you guys!

Katrina said...

Erica, I cannot imagine the burden you have been carrying this whole time. I will be praying that the Lord lifts it off your shoulders and that you feel peace about the decisions that ya'll make. Praying for Eli to gain weight!!