One month. I couldn't believe I was going to his one month appointment. Staying in the hospital for almost the first whole week made that one go very fast. But I can't believe how the last four weeks have flown by. I think with all the appointments and all the traffic of visitors and meals, we haven't had a chance to sit down yet. The crazy weather and delicious meals have not helped in shedding these baby pounds, I think I eat as frequently as Jack does...every three hours! :)
I had the car all packed up. After the appointment at 9:30, Jack and I were headed to Nana and Papa's house to meet up with the Poppe's for a weekend in Luverne. I couldn't wait to get to my parents and see family and have my Grandma meet Jack for the first time. I sent Luke off with Chris to go to Gramma and Grandpa's and Jack and I were enroute to the appointment.
The first part of the appointment is always filled with weight, length, head circumference, and temperature. I was surprised to learn at his first appointment that they have a specific growth chart for children with Down syndrome which I have come to really appreciate. I know in the future there will be a lot of comparison with the 'typical' child his age, but to know that his growth is among other children with Down syndrome is comforting. I am grateful they have so much data and research for his diagnosis that it won't be another thing that we will be reminded that he might be behind in.
Dr. C had come in and we got a chance to go over the past couple weeks. "How is he eating and sleeping?" "How is Luke adjusting?" The basic questions and then onto..."Let's take a look at him."
As I laid him down on the table he immediately noticed how large his belly was. "Is his belly always this descended? Does it usually look like this?" I responded that he had just ate and that I had thought from past conversations that children with Down syndrome usually are floppy and have a little larger belly. I don't know when I thought I heard that, but at that moment I think I thought I might have made that up in my head. I am sleep deprived but as he kept pushing on Jack's stomach I was starting to wonder what he was looking for. Should I have noticed this?
"I would like to get an X-ray and ultrasound of his stomach. Do you have plans for today? I would like you to go to Children's and get this done as soon as possible. " My plans of leaving to go out of town flooded my mind but at that moment didn't matter. Children's. I got a sinking feeling in my stomach.
After getting the orders written up it was confirmed that they could get us in at 2pm. I sat down and called Chris. Emotions filled my voice as I told him that Dr. C wanted to get his abdominal area looked at again and that we needed to go to Children's hospital. I was scared and frightened by what they might find.
I was just saying to Chris the day before that I found myself not asking God every hour (or minute) for strength, that I was feeling more hopeful. The days were getting easier and that I was moving toward the acceptance stage of the reality of Jack having Down syndrome. As Dr. C came back and told me what the x ray and ultrasound would look like my eyes began to fill up with tears. Here we go again. Was I getting too confident in my own strength and I thought everything was fine. Saying, "Thanks God...but I've got this."
"No...you don't have this...I can carry this for you."
As I drove to pick up Chris I called my sister and just cried. Cried because I was scared. I was scared for Jack, scared for what they would find, and scared because I had fallen in love with this little guy. I told her that when they did all these tests in the hospital I didn't know him very well. This past month I had learned so much about him, cuddled him, fed him, bathed him, changed him, loved him and now I am scared for him. I let my heart love him and now they might tell me that there is something growing in him that could take him from me. "Okay Lord, I accepted that he has Down syndrome, but now this? I can't take this?"
"No...you don't have to...I can carry this for you."
Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."
I hate going to Children's. I am grateful to have such an amazing hospital so close to our home. I know that we are very blessed to have one of the best hospitals in the US near us for the best care for our little guy...but I hate being there. I hate being there because I know most families that are there are because their child is sick. My heart hurts for every child and family there because there is uncertainty if their child is going to be healthy (again).
We laid our 8 pound baby on the metal table as they strapped his little legs down and I held his arms above his head. He cried as the x ray scanned his belly. It was quick and seemed painless but again I felt like it was surreal to have my baby laying on this table. Now onto the ultrasound. The only ultrasound I have ever seen done is on my pregnant belly. The technician put the gel on his stomach and looked around for the specific organs. I couldn't believe that seven weeks earlier I was having the same thing done on my own belly, with him inside.
We waited for our Doctor to call with the results. The radiologist told us that they needed to get one more x-ray and then we should have more information. Our Doctor called after the second x-ray and said that nothing came up on either of the x-rays and ultrasound. That his belly was filled with gas which was causing it to be so descended. He suggested going to the gastroenterologist and also have him tested for aspirating while eating. But nothing serious. Nothing but gas. Really just gas? Lord, is that your way of saying...I do need you every hour for even things like gas? ;)
While we waited we were so comforted by the prayers being prayed for our little Jack and the encouragement that we were given. There is power in prayer. I read something that was shared with me during this moment of uncertainty...I hope you are encouraged by it as much as I am...it's a reminder of God's love for our children.
"Your children are precious to Me. Even more precious than they are to you. I have entrusted them to your care to raise for Me. What you invest in them is an offering to Me." -roy lessin
I need Thee every hour...