Mic-Key Button

Hi all! It's been an emotional roller coaster...Alex continues to tolerate the tube feeds but not the NG tube. We pull it out in the morning and put it back in every night. This way Alex has her day without the tube. We tried everything we could and more to have Alex sleep in her crib but even with a no-no on one arm and double mittens on the opposite hand Alex managed to pull the NG tube out and rip the tape off her face. At first she would pull it out in the early morning but after a few nights she began to pull it out in the middle of the night. I did not think it would be safe to have a no-no on both arms because Alex is an active sleeper and can be a bit rough at times. I was afraid that if Alex got her arm stuck somewhere she may injure herself...We had to go back to strapping Alex in a seat with a no-no on both arms in order to give her the night NG feeds. This is not easy...Alex won't go to sleep unless both Steve and I are with her. She wakes up throughout the night and if she can't see us she gets really upset so we now have her sleeping in our bedroom. Alex is not able to comfort herself (no thumb) or turn in her sleep. We can get Alex to go to sleep pretty quickly now which is nice. She wakes up throughout the night but goes back to sleep quickly. Once her feed is done in the morning Alex sleeps in bed with me for another hour or so. Alexandria continues to not want to eat during the day. She gets angry and frusterated when I try to feed her. After speaking to the G.I. nurse (our doctor was on vaca) I found out that this won't be a short term thing for Alex and that most babies like her are on a feeding tube for at least 6 months to a year. This nurse told me about a G-tube (a tube that goes directly into the stomach and once it heals is switched to what is called a low profile Mic-Key button) in case our G.I. doctor would want to discuss this with us. I got kind of upset eventhough I knew this may be coming. I looked up G-tubes in babies online and cried everyday for about a week. I found getting out of bed difficult and doing any little thing a chore. Everything was hitting me at once and I started to become depressed. God was very kind during that time. He showed me my fears and areas I need to grow in trusting my Saviour. He also lead us to a family with a child who had an NG tube and then switched to a Mic-Key Button while we were out to lunch on Sunday. The mom approached me and asked if Alex has an NG tube. She said she recodnized the tape on her face. We started talking and she showed me her child's Mic-Key button. It was nothing like the pictures I saw! The mom said she loves the Mic-Key button and it's so much better then the NG tube. She said her daughter has some developmental delays because she did not get the nutrition she needed quickly enough. Then the other day our nutritionist gave me a number to a mom in a similar situation as ours and it was so helpful! This mom loves the g-tube also. Said it was such a difficult decison but she wishes she did it sooner. Said that like with Alex a lot of people don't understand why her son needs it because they say "he looks fine" and is very active. We talked about how difficult it is to have to explain over and over again what is going on and have people look at you like you are crazy. The G.I. doctor called this evening and when I told him about the sleeping arrangement and how little Alex has been eating during the day for over a week now he said that we really need to move on to the G-tube because this will be a long term thing and Alex is clearly not tolerating the NG tube. He said we will also need to work with the feeding team to figure out why Alex eats so well sometimes and other times she refuses to eat at all as well as why she is not drinking much and how to get her to drink more. The G.I. doc said Alex will be more comfortable with a Mic-Key button and it will make our life more managable. I do not like the idea that my baby will be cut open again. I do know she needs this. Basically I need to accept the fact that I have tried everything to avoid this but that some things are simply out of our control. I need to surrendor to what's going on and be thankful for the provision available to us. This is easier for Steve then for me. Maybe it's a mom thing. We will be appling for disability for Alex because not being able to eat is considered a disability. This will cover our formula and whatever else our insurance won't cover but it will take about 8 months or so to kick in. I will also be given a number to a CHOP once a month group for parents of babies who have feeding tubes and eating issues. For now we simply need your prayers and support during this time. Please refrain from saying things like "but Alex looks fine" or "Does she really need this" or anything that sounds like you are questioning if we tried everything there is to try or if we are doing the right thing or if any of this is really needed. Saying things like "like nature take its course" or "she will start eating at some point" are not helpful either. As a matter of fact they are all hurtful. We are working with some of the top doctors in the nation in one of the top children's hospitals in the nation and we are doing everything we can do for our child. We realize that this is all hard to understand and if you don't understand it that is fine. All you really need to know is that Alex is not eating or drinking the way she should even is she looks and acts fine; that we tried everything we could to get her to eat and drink on her own and to tolerate the NG tube when she got it and that what matters not only for the moment but for long term is that Alex gets the nutrients she needs in order for her brain and body to develop the right way. If you want to ask questions about what the doctors said or how we feel about it or what we think of it all or how we are doing that's great but please be sensitive to where we are at. Our hearts, especially mine, have been very tender lately. We have an appointment with our G.I. doc and the nutritionist this Friday at 1:40 p.m. Between now and then the G.I. doc will be contacting the surgical team about the G-tube procedure and the feeding team about working with Alex on eating and drinking the way she should. We will be leaving to go on a family vacation the next day and won't be back till Saturday July 25th. We really NEED a vacation at this point and can't wait to get away! I will try to write an update when we get back. if I can not I will write one the following week. We will have July pictures to post soon! Oh, and on the upside, Alex is doing crazy well when it come to P.T.! She is sitting up from laying flat, crawling and pulling herself up to her knees! We are going to retest her during our next P.T. appt to see where she is at and then decide how to proceed. She is into everything if you let her! And makes some very funny faces and sounds. She is facinated with baby boys...and so-so with baby girls which is funny to me (at least in this age group...). And all is calm on the kidney front (next ultrasound and follow-up appt not till September). Thank you once again for your prayers, friendship and care!