Tuesday, September 20, 2005

9/20/05 'Round Midnight 12:16 a.m.

Theo is sleeping inhis own crib for the very first time. He has slept in the bassinet next to our bed until tonight. We got home around 3:00 p.m. Nobody was here to meet us. Jamie went to pick up all Theo's prescriptions and I stayed with him. I was very anxious, nervous and worried. I called all the companies involved and in about 30 minutes started getting phone calls from the people driving to the house. First the food supply company Praxair showed up with his feeding pump, bags, and formula. She showed us how to load the formula into the bags, thread the tubing, and run the machine. They sent the wrong formula and the wrong sized syringes to flush his tubing. They hadn't gotten the message that he needs formula concentrate and not ready to use. He has to have the concentrate because right now he is getting a mixture with less water to ensure higher calorie feedings with less volume (he was spitting up due to too much food in his belly). We got it all straight and luckily we had samples of the formula from the hospital and we can also use the powdered forumula we have already if we need to. It wasn't that hard to learn to set up and run the pump, it was just the unreality of the whole experience. It was really hard for me to concentrate on everything she was saying. After she showed up, the man from Bon Secours came with our antibiotic pump and all the accompanying supplies for that. He didn't stay long, but did have several paperwork pieces for me to sign as did the lady from Praxair. Then our very nice and helpful social worker, Dawn, from Noah's Children (not Noah's Ark as I said before) came and really did help me to feel a little better about the whole situation. The others left and we were trying to figure out his medicines. We gave his 5:00 p.m. meds and then our home health nurse Sherri showed up. She stayed for over two hours going over his medicines with us, teaching us about running the IV antibiotic pump and again filling out loads of paperwork. I thought I was going to scream before it was all over. It was so much information in such a short period of time and under such stressful conditions.

Today was really hard for me. I am really glad to have him home, but there is also a new kind of sadness as well. All I can think of are the times we had at home before all this happened. It's all so very different now. It's all so surreal. I feel so sad and heavy hearted. We are doing our best. I think it going to take us time to adjust to this new way of being a family. Tomorrow Jamie teaches his classes and I am staying home with Theo. The next day I go bnack to work and Jamie will stay with Theo. I hope we will all have good days together.

I'll keep you posted on how it's going. I will most likely not post every day, I'll shoot for every two days or so. Check in regularly and scroll down to be sure you don't miss any messages.

Please keep praying for us and keep us in your thoughts.



ROBIN said...

Hi Karla
I know you and Jamie must be worn out from travel back and forth to the hospital with limited hours of sleep - plus tons of information to digest on top of it all - maybe now that everyone's home you two will be able to get some much needed rest.
It is hard not to but, try not to stress too much, the info will sink in.
I realize the setting in your home is not what it was
before, you are a strong woman, I can tell in your writing. You are also blessed to have a strong partner in Jamie. Keep smileing for Theo.
He is a special little soul sent here to teach us all.
Sending love,

Nitika & Josh said...

We are with you in every way possible.
Don't hesitate to let us know what we can do to help and we hope you can feel our thoughts and prayers.
Both of you are so strong to be handling the situation so well and Theo is blessed to have parents like you. We love you much!
Joshua & Nitika Achalam

Carrie said...

Hi Theo, Karla, and Jamie,

I became aware of your blog after a mutual friend of ours (and my neighbor, Paula) asked me to print out your entries (since Paula does not have access to a computer). I continue to read your notes because you have remained in my heart and in my prayers since I first logged on and read your emails.
I just wanted to let you know that I am praying for peace and healing for you and your family. I believe in miracles and, like your cousin, will pray without ceasing. I've also asked my church congregation to pray for your strength during this tough time.
If I can do anything else, please let me know. My personal ************* is "cjenkins925@direcway.com". Just email me and I will do anything it takes to help you all. I hope being home brings some peace and that your new routine will soon feel a little more comfortable. Although I have never gone through personally what you are experiencing, I am friends with another family whose young child is battling cancer that developed in the womb. If you want that families' information, let me know and I'll get it to you. It sounds like Noah's Children have something similar, though. I hope you continue to find support and strength from those close-by. And, please know, others - further away - are sending love, strength, and support from afar.
Thanks for continuing your blog. It must be hard to manage everything right now, but the updates are nice.
With love and God's blessings,