I have gotten asked this question many times lately because I think everyone around me/us knows that we have been struggling to get Charlotte to eat. That struggle has not improved at all recently, in fact it has gotten worse. Charlotte continues to vomit almost daily, and also vomited at our most recent trip to the Feeding Clinic at Cardinal Glennon last Friday. The team was speechless, and ended up telling me that they were very concerned and felt they didn't have any other suggestions for us at this time other than to call our GI Dr. and be seen soon.
After recieving that kind of news from them, my heart was very heavy. This was supposed to be our last resource, but our GI specialist was optimistic and confident that they would be able to help us. So to the feeding clinic we went, hopeful, optimistic and with an open mind. After only 2 weeks and looking at our meticulous records of Charlotte's behaviors and intake, they were telling me, they couldn't help. I was already very concerned earlier that week by how much worse the vomiting was getting, and also because Charlotte began refusing ANYTHING that came at her on the spoon. She has such negative feelings about eating now, and who wouldn't if they gagged and vomited half as much as she does???
So, we marched to the GI Dr. again on Tues. and thankfully Chris accompanied me for this one. We knew that the discussion would be quite serious and I knew I needed him by my side. After discussing everything that had gone on, weighing Charlotte and discovering she is losing weight, we came to the conclusion that we will do 2 more tests...a Gastric Emptying study (on Friday 2/1/08) and the Barium Swallow Test (on Tues. 2/5/08). With these tests, they don't anticipate to find anything abnormal, but in case there is, they want to know if there is some way to help her i.e. if her stomach doesn't empty fast enough, or if she has some type of obstruction or abnormality when she tries to eat that causes her to gag/vomit. If these tests come back normal, the Dr. told us, she is going to recommend placing a feeding tube surgically (A G tube) that goes directly into Charlotte's stomach.
Having to actually type that and tell people that it is really "That Serious" is awful. They look at us in disbelief and I am sure you are thinking/feeling the same right now. The fact is, Charlotte needs to have adequate nutrition... She is not getting it, and on top of the vomiting, is refusing food now more than ever. This battle, her vs. us, cannot go on. It isn't healthy for her, and every meal is that way. We have to turn her negative attitude about eating into a positive, and the only way to do that is remove the negative...but we can't stop feeding her. So, we must find another way.
In some ways it feels as if we are taking a step back, and in some ways a step forward. So, I will compromise, and just say we are taking a step to the side, and accepting help in other ways for our daughter. This is not the path we thought we would travel, we hoped day after day that things would get better, but they aren't. This is going to be a long process, and her growth and development cannot be compromised because of it. I know this will take a lot of getting used to, but just like everything else, it will become our norm and something we are comfortable with. I will be happy that she is able to have the nutrition she needs, and the rest will come with time and continued therapy to figure out how to help her. And hopefully, when she can communicate with us, she can help us know how to help her too.
Added up, we have been agonizing over Charlotte's "size"/nutrition for over 1 1/2 years. God has placed a heaviness in my heart because he knew that she needed help. I have never been able to relax when it came to feeding her, and it is worse now more than ever. I hope that heaviness will be lifted some in the coming months.
As far as when they will probably place the tube, likely it will be Feb. or early March. We are currently trying to find out if our neurosurgeon will work with us and perform her tethered spinal surgery at the same time. It is a lot for her to go through, but better than putting her under anesthesia again in a few months. Whenever we know anything for sure, we will update everyone.
I want you all to know that this decision was not taken lightly by Chris or I, and that we have spent many nights trying to decide what the "right" thing to do is, and just listen to what God is telling us to do for His child, His gift. We feel in our hearts that this is the best way to get her back on track and help her develop and grow right now. The past month has been very difficult for us, and to say we will be relieved when the tube is placed is like an oxy-moron to me because as much as I want it, I equally don't want it.
I feel so much more in my heart that I would like to share with you, but it is so hard to type in words. Just know that your prayers are much appreciated, and that we are thankful for each and every one.