One Month Later.

Last month on this day we underwent about 25 tests, procedures and blood draws for Kendall up in the hospital. It was a brutally long day, but a day that gave us direction, hope, and even a few answers.

and today, I feel like we’re back at square one.

Yesterday her home health nurse came for her weekly visit, went to weigh Kendall and said she was 10 lbs 3 oz an I was like ” WHAT?!?!? do it again!” After arguing with darling nurse about the fact that she weighed 10’8 LAST week, nurse checked notes, realizes I am right, resets scale and weighs her again. Same results, a 5.5 ounce LOSS. I was immediately saddened for my baby girl – because even though we’re talking different scales – she was 10’10 at Dr. Natalie’s office on tuesday. Something is clearly going wrong. I’d LIKE to believe that maybe nursey-poo was just delusional yesterday. That maybe her scale really is off in some wacky way. But besides the weight, she was also worried about Kendall’s bloated tummy and visible rib cage. Enough so that she immediately called Dr. Natalie’s office, spoke with her nurse, and is having us go in to her office today. The first appt. time we were given was 3:30. Then nurse called back and bumped us to 1. Then physician’s assistant to Dr. Natalie calls back and says “Dr. Natalie is trying to leave rounds early tomorrow and wil all us as soon as she is heading to the office. She wants you to meet her here as soon as she gets here.” At least they’re taking it seriously!

So we (ben and I) spent the rest of the afternoon in a semi-funk. I guess this is the “one step back” part of the old “Two steps forward one step back” adage. It just really sucks. (sorry mom and grandma.) I made the marvelous mistake of reading about babies who have missed low blood sugars last nite before bed and spent almost the entire nite up and checking on her and praying for her. I know that in reality there isn’t anything outwardly different about her than the night before – but i still couldn’t shut my brain off to the crazyness of the situation. So I am up early this morning, contemplating what I need to go in armed with for our appointment with the doc. What info can I put together that will help us narrow down the picture and FIND THE PROBLEM. What is my plan B if Dr. Natalie sends us inpatient – and what if it’s inpatient up at LG again vs. Rush? Lots going through my mind. My head hurts from carrying around these constant deep thoughts, this constant “Dr. House”-like differential playing through my brain at all hours of the day, and even some of the night.

But for right now, the house is quiet. I can hear the Kaylenator wanting to try to wake up, and I just heard the stupid cat knock over a vase of flowers on the kitchen table, and a few neighbors are starting their morning commutes – but it is mostly just me in the dim early morning light click clacking away on the keys, trying to make sense of what today may or may not hold.

We would so value your prayers today. I know Dr. Natalie will make the best decision for my baby – but I know she will also need the clearest picture from me about what is going on. Pray that we can start working toward a real ANSWER for Kendall, and getting her the help she so desperately needs.

I think today’s going to be a great day though. I just have no idea where I’ll end it at!

I hope you all have a wonderful Friday!

thanks for reading and praying.

 

terra