Final Touches & Update on Joanna Claire

I sat on the couch after my appointment yesterday and finished off the blanket I made for Joanna Claire. Nothing fancy, but a special little blanket made with love by her momma. I tried to take a couple pictures, sorry, not the greatest. But, I love how the ribbon and bows in the corners turned out IRL (in real life). I also stopped at Babies'R'Us yesterday to see if I could find a preemie outfit. I sat in the parking lot, after hanging up on the phone with my mom, tears streaming down my face thinking back to the day we went inside to find a preemie outfit for Noah to be buried in. I wiped the tears and checked to see just how red they looked behind my glasses and composed myself enough to walk in and accomplish the task. I wanted something that would go with the purple blanket...though most everything I found was pink, I'm happy with one outfit I found with purple and pink butterflies. Hopefully it will fit. As I checked out the lady tried to make small talk..."Oh do you know you're going to have a little petite one?" "Yes, we do." is all I could muster up and out without a flood of tears. What a crazy life I have!! Lord, what are you going to do through Joanna's life? I know that in spectrum of eternity, that these months I carry her will be like a blink of time, but right now in the midst of it, it seems like it will last forever. And not just once,now, but twice?!?!

Trent and Drew make comments like, "You can play catch with me when the baby's out right? When the baby's out, you'll go swimming with us then?" They see/understand much more than I give them credit for and I wonder how this will affect them. It's hard for me as their mom to have to sit on "the bench" and watch life go by and then have nothing to "show for it" once I deliver and come home. I'll have jump right in and be "normal" again although my thoughts and emotions will again go back to sitting on "the bench" and thinking/dreaming of what I'm missing out on as mom of 2 children in heaven. Does that make any sense?

Going back to my appointment earlier in the day, Mike and I sat and waited to see what had changed over the last week. I counted 42 bpm on Sunday and on Tue I got 44-46 bpm. This morning the doctor counted 46 bpm. She is slowly declining. I think she was in the 50's for a few weeks though, so maybe she will stay in this same slow pattern of decline. Who knows! The doctor looked closely at her heart to see it from all different angles and mentioned that last week he really tried to see where the fissure was. He said that two other parts were not crossed and that the atrium was only one space not two. I think he really took time to see if it may be worth it to have an amnio to determine if there were bigger issues- meaning chromosomal. He assured me (like last week when I asked) that the best thing would be to test the placenta after she was born. I interjected, "because there is nothing that can be fixed?" He replied, "Yes." He commented on the interesting pictures he was looking at on the screen. He quietly said, "I'm sorry, I wish it wasn't you and your baby that I'm looking at." He pointed to the screen and showed me her intestines floating in fluid - a little white pyramid all surrounded with black. He moved the probe and showed me her liver and a lung again all surrounded with black. He looked at her head and said there is some edema present. From what I understand it is swelling and accumulation of more fluid caused by the heart failure. My mind wonders just how normal she will look when she is born and I am scared for just a second. How much more can she take? How much more can I take, Lord?

He looked at Mike and said, "I know that Kristin would throw herself under a bus for her kids, but I want you to be watching for unexplained nausea or vomiting and swelling. If you see this, do not pass GO or collect $200, come in right away. Her blood pressure looks ok today, but her placenta is very large and it could begin to release toxic fluid to mom, causing toxemia. I will blow the whistle and put my foot down at that point."

As he wrapped up his time with us he said, "I'm so glad you have 2 healthy boys to give you your inspiration." He continued to say that he'd attended the funeral of a trisomy baby he delivered by elective c-section (new change in his practice!) that lived for 3 days. He paid them a big compliment and I hope he'd say the same thing about us. He said, "I went to the funeral and if there is anyone who has made lemonade out of lemons, they did it." It is not my boys that give me inspiration to go on one more day, though they do keep me smiling, I hope he sees it goes much deeper than that. It is God who gives me what I need to make it through each minute, each day, each week - now for 25 weeks. I know he sees the difference in us and in a few other patients. He has shared some of how he is processing it all. I think he is really wrestling with how they mesh - intellectual medicine and the value of each life. I'm thankful God is allowing me to see and hear these little glimpses into his life and thought. It encourages me to continue to "do the right thing" when my head and selfish heart just want to be done living in limbo and begin moving on.