Friday, February 5, 2010

 It took us years to get to this milestone...

As I took that small silicone tube out of his belly I had a million flash backs all crammed into that one moment. It was like one of those instances in life when you feel like there is a slow motion pause. My fingers eased it out and threw it into the open trash can a few feet away. And as it sailed through the air and into the trash the memories flooded in. The hesitancy of the doctors at sending him home from the NICU because he was not yet taking more than a few ml's of formula by mouth. Educating ourselves on using the nasal gastronomy tube; a small tube which we learned to thread down through his nose and into his stomach. In those first few months at home this is how each feeding was given. We had to learn how to test it to make sure it was in his stomach rather than his lungs. If it was placed wrong he could drown on his formula. Simple detail, ya'know? The late nights of waking him up and trying to get him to take a bottle. Night after night after night. Sobbing in an emotional state that was beyond tired and grasping at hope. 2:00 am - coaxing a tiny 6 pound 4 month old to please, please take the bottle. Telling everyone that he would get it. He would. He just had to! I would work with him. We would start speech therapy. Hour after hour after hour, pushing feedings. And slowly, slowly, I started to lose my mind a little bit. The truth I had been denying was that my child was not eating even half enough to sustain his life. And I could do nothing to change that. I was working myself up into a stressed out state that was at best exhausted, at worst discouraged, and teetering on panicked. It is one of the most common issues that preemies deal with later on in life; eating difficulties. We got hit with it full force in K's case I remember one night when he took the full bottle of formula and I woke Dave up to tell him. I was rejoicing and relieved and just so, so happy! -The only thing was, we were using these teeny, tiny 2 ounce bottles. And he didn't do it again for a very long time. Most of the time we "pushed" his feedings with a large syringe and his ng tube. It was incredibly time consuming. It didn't just consume my time, it consumed my mind. Every single doctor and therapist recommended surgery to place a gastronomy tube into his stomach. I was dead set against it! No! That would mean I was declaring that my child could not eat. And he would - soon. I would keep working with him and very soon he would be eating just like any other baby. But it wasn't to be. And one day something inside of me just broke. K was 18 months old. The thread of hope which I had been clinging to unraveled on a day in which I was sleep deprived and had spent literally hours trying to feed him. Placing the ng tube frequently was becoming more difficult. I remember calling Dave at work and tearfully making plans to call the pediatric surgeon to schedule G-tube placement. I can not even begin to describe the relief I faced in the months following that surgery. I took the pressure off from him and myself and allowed all feedings to go directly into his stomach via G-tube. Previous to this surgery K was not even on the growth charts. In the first year that he had the G-tube he went up to the tenth percentile. He had rapid brain growth and his gross motor skills took off in leaps and bounds. He began walking. He was finally getting the nutrition he desperately needed. It was so very much the right decision for us right then. As the years went by we began to introduce more foods orally, but he still really struggled with eating enough. I kept food diaries and saw nutritionists, but it was quite apparent that he just really needed the majority of his food through the G-tube. And, in true K style, one day when he was about 5 1/2 he began to eat. On his own time table, in his own way, he decided he could do it. We stopped using the G-tube completely about a year and a half ago. He went up to the 25th percentile entirely on his own. We kept the G-tube in, just in case. But a few months ago we began talking seriously about taking it out permanently. It seemed to itch him a little bit and it came out a few times, causing teachers at school a bit of stress. So, yesterday it came out for good. I took him to see the surgeon who had originally placed it and under his watchful eyes, I removed the tube and threw it away. One last time. I felt a little bit choked up - in such a joyful way. God has brought us through so much with getting this little guy to where he is today. 7 years old, 45 inches tall - and 50 pounds.

8 comments:

une autre mère said...

Wow. I cannot begin to imagine the trials you have had to endure. God knew that you could handle it and be stronger for it in the end, and obviously, you've proved Him right. Congrats on getting rid of the G-tube! You and K have come so far! You are such an amazing mother! :)

Rachel said...

Wendi, thank you for sharing about real life, and about some of the struggles you have been through. I can't imagine how hard those days must have been. But look at how well your precious boy is doing now! You took such good care of him and it is obvious that he is just thriving because of your love and care.

Katie@The Baby Factory said...

He is beautiful!
Congratulations on making it to 50lbs! Your love and care for your boys is obvious with your every word. They have a great mommy :)

Jenn @ A Country Girl's Ramblings said...

Your writing always bring tears to my eyes. I felt like I was right there with you urging him on, cheering for him. What an awesome milestone for K and you!

nault's nook said...

YAY!! Such a milestone! I know all too well how stressful eating issues are and I am so glad he is now eating and thriving. What a beautiful boy and a beautiful mama!

MoDLin said...

Oh what a happy day that must have been. Congratulations on reaching such a huge milestone. May many others continue to come tumbling in!

Rach@In His Hands said...

Hugs hugs hugs, friend. I'm SO happy for you all....way to go K!!!!

Thinking of you and saying prayers as you ride out this week with K in the hospital. I wish I lived close, so I could come by and help you out!

Aminta said...

The beauty in His timing. I am so proud of you guys fro making that hard decision. I cannot imagine that it was easy.
I love you Wendy. You are amazing. And K....... wow boy! You are so strong. Jesus has always held your hand. And trust me, He will not let go.
Love you guys!
Minta