Saturday, June 16, 2012

Room with a View

After being back at the hospital for a day we fell right back into the routine. Good news . . . JD seems more comfortable and there are only a few updates so this will be a shortish post. Yay! for shortish posts.

New Room
One of the goals in the new hospital is not to move kids from room to room. However, JD likes to do things his own way. As I mentioned we did not have a window in JD’s room at the new hospital. In passing, I may have pointed out how I wished JD could have natural light as I think it is important for a baby his age (he is no longer a premie)  . . . low and behold they moved us. Everyday JD is now greeted by the Eastern Sun shining through his extremely large window. Call me crazy but I have noticed improvement in JD’s comfort since moving into the window room. He is awake for more hours throughout the day, he is more active, and he appears to be more at ease in his new room. Plus, it sure helps mom and dad to have natural light when spending hours in a hospital room. To that, I have to thank our other primary nurse Beth who made the room switch possible.

While JD’s oxygen saturation levels still drop every so often his overall numbers look much better. However, he tends drop during his feeds so the doctors are even more convinced he has reflux. I, on the other hand, am not. I find it odd he never spits up, we never see milk in his mouth, and he has not had problems with reflux until two weeks ago. Yes, it is possible to have reflux that we cannot see and yes, babies tend to peak with reflux around 4 months so he can start any time . . .but I still do not think reflux is fully to blame. My medical opinion, I think he chokes on his saliva because he has a hard time swallowing with the tube in his throat. And I think he has a hard time, ummm, “filling his diaper.” He usually fidgets and turns bright red just before he needs a change - normal baby stuff.

Yet, to ensure we rule out a few things the doctors have put him on reflux meds, which do seem to be helping. It is slightly difficult to tell what we can credit for the change in his comfort as we have changed a few things at once. That said he seems to be doing better so if the meds are helping then I am happy to be proven wrong about reflux.

My many, many days of medical schooling I have attended while here have led me to believe we would discuss the G-tube again. Now, this is the main point of discussion. One of the reasons I believe they moved us to a window room is our stay will be extended with a G-tube surgery. I will not discuss all the details again but the doctors are waiting for a consultation from the pediatric surgeon to decide if JD is ready.

There is another decision as well. When putting in the G-tube they are debating about doing a G-tube and Nissen Fundoplication surgery to help with reflux. Basically, the Nissen surgery is very intense operation to prevent food and liquids from going from the stomach up into the esophagus – a fancy way of saying reflux surgery. NO WAY . . . is what I said to the doctors. We are okay to discuss the G-tube but there is no way I am convinced to do the Nissen procedure as well. Dr. P reassured me this will only happen if they believe it is reflux, which is not being controlled by the meds. NOPE. After putting my fingers in my ears and singing so I could not hear any more they said this was a last resort.

On Monday, I plan to be here for rounds so we can chat about timing for the G-tube surgery. I will once again put my fingers in my ears if they even mention Nissen surgery again. In our eyes, that would be quite extreme for JD. Don’t get me wrong, the doctors are in no way pushing this surgery as they have just mentioned it. Yet, in my mind it is not up for discussion (who knew I could be so bossy).

Playful JD
One last thing I have noticed, when JD gets fidgety or upset while awake he settles down when put him on my legs facing me and we play. We sing Head, Shoulders, Knees, and Toes, ABCs, and You Are My Sunshine. We work on holding our hands and touching our knees. And we read books. The more we interact the better his numbers. It is my new goal that anytime JD is awake I will not put him down and we will play the whole time. There are few things better than looking into the bright navy blue eyes of your child.

Navy blues
JD loves playtime

 JD is having a great day and getting more comfortable with each feeding. We are confident it was the right thing to do to bring him back to Lurie’s. Once he has the G-tube we know he will continue to grow more comfortable each day and we can official start (again) our life as a family of 4! Just in time for the 4th of July.

Connor came to visit his little brother again today and loved the scrubbing in part of the day. Once in the room he continued to walk around rubbing his hands together saying “wash, wash.” Oh how proud I am that we are raising a germ-resistant son.

Happy Weekend. Go Cubs! 

JD's new digs, notice all the natural light coming from the left

JD's 2 Month sign


  1. I am happy JD got a nice room. They also tried to talk to us about doing a fundo with the g tube. They did two intense reflux studies which showed no reflux, so no fundo! We were thrilled with that. Since then Magnolia has been put on reflux meds. I still am not convinced she needs them, but they think so so why not? Good luck!

  2. We also did not do the Nissen, which the doctors didn't want anyways. But with Riley, who has mild reflux before the g-tube, her reflux did worsen afterwards. However, I personally think the reflux is easier for her to handle than the side effects of the Nissen, such as retching and gloating. I'm glad to hear JD is settling down and can't wait to see pictures of him at home again.

  3. He is such a champ and I am so impressed by all of you. What a terrific family you are! Keeping you all in my thoughts and prayers and sending much love your way! xoxo

  4. I am glad JD is doing well and that his big bro is getting to visit him! also, of course, i am glad you are getting lots of good visits from our favorite doc, Dr. D.

  5. Sending more love and prayers and hoping that no updates means good news. Love you guys! xoxo