Tuesday, April 12, 2011

Nuthin but a G (Tube) Thang

For our blog readers who don't enjoy Wii Rap Star as much as I do (this is Kristin, by the way), the title alludes to one of Snoop Dog's classic anthems about a day in the life of a gangsta.

Sam is definitely still the man, but he is also unfortunately still the man with major acid reflux. Back when our pediatric cardiologist told us that Sam would likely have feeding issues after surgery, I didn’t feel too concerned about that part of his recovery. After all, compared to open-heart surgery, a little acid reflux doesn’t sound so bad. What I didn’t realize was that acid reflux is a huge deal to a little guy like Sam. I will try to keep it brief, but his digestive problems are much more severe than that of an adult or a healthy baby, and here’s why:

1. One of Sam’s vocal cords was damaged during his surgery. Because of this, Sam aspirates pretty much everything except for breastmilk that has been thickened to a honey quality.

2. Because Sam has to work so hard (and burn so many calories) to suck and swallow this thickened milk, he has an NG tube so that he can get the daily calories he needs in order to heal, grow, and develop appropriately.

3. Unfortunately, the NG tube keeps some sphincter open in his throat that adds to his acid reflux.

4. Sam has frequent acid reflux, as many babies do, but he aspirates his reflux.

5. When he aspirates his reflux, his oxygen saturations plummet, and his heart occasionally clamps down as well. It’s terrifying, and he needs to have his oxygen turned immediately up in order for him to recover.

6. All of the food, acid, etc. that Sam aspirates into his lungs puts him at risk for a serious lung infection.

The solution that the doctors are proposing? They’re thinking that he will likely need a G tube, or a feeding tube that goes directly into his digestive tract. They also want to “wrap” part of his digestive tract (Jason and I don’t fully understand this part yet, nor can we remember the official name of this procedure at the moment) that would essentially stop his acid reflux altogether. The huge benefit of these two actions—the G tube and the “wrapping”—is that Sam’s acid reflux would be gone. Combined with feeding him only honey-thick milk, the G tube would significantly reduce his aspirations and thus reduce his risk of lung infection.

The G tube is also preferred over the NG tube by many doctors because the NG tube can come out easily and be misplaced in the lungs, but the G tube tends to stay put. Many occupational therapists recommend the G tube over the NG tube because the NG tube may cause oral aversions. Also, if Sam were to need medication immediately, the G tube would be an efficient way to deliver it. And most importantly, the G tube will allow Sam to continue bottle feeding but will offer us a way to deliver extra food and calories to make sure that he continues to grow.

Of course, as you may have noticed from our earlier posts, there are no easy solutions around here. Placing the G tube requires another surgery, which means that Sam would have to go under general anesthesia again, be intubated again, go back to the CICU, and face the same risks that all surgeries pose. I’m not particularly looking forward to seeing another tube sticking out of my son’s body, and the thought of messing around with yet another part of Sam’s anatomy is not ideal. Wasn’t rerouting his circulatory system enough? While Jason and I are open to the idea of the G tube, we still need a little more convincing before we hand our little man over to the surgeons once again.

So tomorrow, Sam will undergo an impedance probe study, a test in which the doctors will monitor over 23 hours how frequently Sam has acid reflux, how acidic it is, and how much of it there is. After that, they will make their recommendation. Jason and I feel fairly certain that Sam is refluxing far too frequently, and while the G tube is scary, so is jumping out of bed several times a night to try to keep him from choking on his vomit and de-satting. While it’s not set in stone, we feel uneasily certain that the G tube is in his not-too-distant future.

Apparently, most Norwood babies go home with a G tube and keep it for at least one year. Also, we’re going to be here for at least two more weeks. When the doctor told me this yesterday, I talked myself out of hyperventilating because I was holding Sam at the time. The thought of two more weeks of beeping alarms, of eating take-out, of living in a tiny room, of Sam lying in a hospital bed, of having absolutely no control over anything…it was too much. I sat and felt sorry for myself until I decided it was time for a run.

But just as I was changing into my running clothes, something happened that stopped my pity party in its tracks. There was a code blue on our floor. Just two doors down from us, a newborn boy’s heart stopped beating. Blue lights were flashing in the hall, and alarms were going off that could wake the dead. When I looked in the hallway, the baby boy’s room was packed with doctors and nurses from the CICI, CPCU, emergency department, and anesthesiology. People in labcoats and scrubs were spilling into the hall, and I could almost hear the anxious pounding of everyone’s heart…and the sad silence of one.

My realization: we can deal with digestive issues. They are a pain, yes, but manageable. We need to be thankful that someone was able to take our son’s tiny, defective heart and make it work. Each day that he’s alive is kind of a miracle. After the baby two doors down was taken to emergency surgery, one of the nurses came in to give Sam his meds. She looked at us with exhausted eyes and said, “Count your blessings.”

In that same vein, I would like to share a few of our blessings through the pictures below:

Here is Sam the Man sucking down his bottle with passion:

Here's the little guy being comforted by his dad, who is wearing some kind of weird hat donated by the CU sports teams:

And here is what Sam would look like if he were part buffalo:

This is Sam enjoying his "Tough Cookie" outfit that our friend Julie sent us (we love it, by the way!):

Here's the little man looking fierce in a beautiful hat that my brother-in-law's mother made for him:

Here is Sam contemplating the meaning of the universe:

Twelve seconds later...

Following Sam's example, I'm off to sleep now. Thanks for reading!


  1. You know, in adults we put G-tubes in with an endoscope and local anesthesia. Might be worth checking into further. The other procedure you're referencing is a Nissen fundoplication. Could they decide on that after they get the sphincter-relaxing NG tube out, I wonder? Nice pics. Ralphie the CU buffalo is going to be disappointed that you're not teaching Sam, a native Coloradoan, the significance of the buffalo hat!

  2. Praying for your little man..boy your description of code blue sent shivers down my spine! 12yrs and 11 days ago that was us. All I can really say is pray,pray,pray and keep writing it all out.

  3. Well, I wish things were going smoother for you all but that little miracle you hold every day makes life so much sweeter. The pictures are just precious. Hang in there and reach out when you need to.

  4. It's definitely a bumpy road, but for now your little man Sam is holding on ... and that's what counts!
    Praying for you all!

    Oh, and I LOVE the photos! He is sooo cute!! ♥

  5. Love seeing little Samuel so alert and checking things out! Time for my favorite cliches (b/c they are true): one day at a time, this too shall pass, time heals everything, take deep breaths, think positive thoughts, keep on truckin', believe.
    xoxo Anna

  6. Thanks, Kristen, for sharing all the specific details of Samuel's journey with those who care so deeply for him and his parents. It's often hard to read about the complications, yet it reminds me of the Paul McCartney lyrics, "The long and winding road that leads to your door." Often life doesn't follow a straight path, but I just know that Sam will be crossing through the Leclaire door one day soon. Thanks for the new pictures! The levity of Jason wearing buffalo horns, along with the beauty of Sam sleeping with his new beanie, is "priceless." Sue

  7. Sam is a tough cookie! By the way you look amazing for just having had a baby! Running! Wow- you kick my butt as post-partum! I will never forget the first time I took my oldest to the ER in the middle of the night for what turned out to be a minor ear infection. At firs the thought of waiting with my sick baby made me CRAZY I wanted a team of doctors examining him AT ONCE!! Not after I filled out paper work, paid a co-pay etc. But after several hours of waiting in there I gave thanks that but for the grace of God go I. Holy cow there were some cases in there.
    Praying For Sam and all the other babies today.

  8. Keeping this tough little cookie covered in prayer, and continuing to pray for the doctors and nurses who are caring for little Wolfie, as well as for his mom and dad. He is adorable. NKL

  9. Sam is gorgeous and so is his mama (and papa : ) ) - sorry that he may need a G-tube, but i agree with the OTs you have spoken to...it allows him to work on his oral motor skills and helps alleviate oral aversions later. like i said in an earlier post, i work with quite a few kiddos who had G-tubes and are doing really well! i truly believe that you two know and understand Sam best. You will know if the G-tube is the right decision. I love you guys and was so excited to see Sam in his tough cookie outfit! Thinking of you often, jules

  10. Reading your blog post sounds like it was taken from a day-in-the-life of my Daniel. After his Norwood, he was diagnosed with a partially-paralyzed left vocal chord. He also dealt with the acid reflux and the aspirations. He, too, struggled with burning more calories than what he was ingesting. The doctors suggested a nissen fundiplication (the upper part of the stomach wrapped around the lower part of his esophagus). It took us a while to reach the decision but we agreed to have it done.

    Now forward six years later, we have a healthy boy (as healthy as one can be for functioning with "half-a-heart") and no more g-tube! Praise God! The only problem we have now is the fact that Daniel can't burp or throw-up if he needs to do so. This is due to the nissen being too tight. We have been told that it will stretch but ... we have seen no visible proof of that. Don't get me wrong, I'm not complaining. I'm so thankful to have my little man and if we didn't have this done, only God truly knows how things might be today. I just wanted to let you know so that you are aware of what questions to ask before getting it done.

    Thanks for all the wonderful pictures of Sam. He is very precious. (I'm sure I don't need to tell you that. {;-) I love him in his "tough cookie" outfit. Too cute! Also, I love the "part buffalo" pic, too.

    We continue to pray for Sam.

  11. Karen and I rendezvoused in Columbus today. We toasted to Wolfie Leclaire...Karen with her diet coke and I with my wine :-) Miss u, love u and know you can get through this next hurdle, g-mama and g-papa thangs. fo shizzle, fo rizzle....ooooo you rock my wizzle! ok, that was weird.