I have so much to say tonight, hopefully I can get most of it out before I forget! The picture is from last week...it is the first one we've shared publicly of Judah's scar. I hope it doesn't bother anyone but what I see is a super relaxed, happy boy who looks like he's thinking, "Don't worry mom, I've got this."
I don't even know where to start. I apologize for not posting for so long. I know many people have been wondering how Judah is doing and have continued to pray without our asking. My dad has gone back to Minnesota and so now we're trying to learn how to do more of this on our own. I probably won't post very often so please assume that no news is good news. We still have a ton of support through Matthew's parents and sister, as well as from many friends who've offered help and we know we're not alone, it's just different not having live-in help :).
Tonight we had the monthly Little Mended Hearts support group. It's a group that meets at Mary Bridge for families of children with congenital heart defects. The evening was centered around a family who had just experienced the loss of their 8 year old son...they shared their story. The father started by giving glory to God for the life of their son and returned to that theme throughout the meeting. I really couldn't comprehend the faith that I witnessed as they recounted the past 8 years and in particular the last few hours of their son's life. Their son, Jacob, died in the emergency room at Mary Bridge while Judah was in surgery at the same hospital on December 28th. They didn't see it coming, he had actually been doing pretty well for a guy who'd had multiple surgeries and more than his share of complications. Jacob had even joked with his dad about his ambulance ride shortly before he passed away because they didn't turn on the sirens and that would have been more fun. I had so many emotions running through me as I listened. I was shocked, awed, humbled, challenged, encouraged, and ultimately and oddly settled by the conversation. Little Mended Hearts is by no means a Christian group, but at the end I really felt like we should have prayed because I felt the presence of God in the room, holding us, loving us, and giving us exactly what we need to live in this moment.
Over the past few weeks I have slowly been slipping into a mental state of trying to control our situation and without realizing it had been functioning from a "what I want" point of view. What I mean is that when something wouldn't go the way I wanted I would get fearful and frustrated. Case in point, Judah has been doing really well until yesterday when he started having blood in his stool. I was sure it was blood in his diaper yesterday morning and that's when I started living in fear again. His diapers looked worse throughout the day and we went through getting his INR checked (normal INR is between 0.8 - 1.2 but because of his suspected blood clot Judah's INR is supposed to be between 2.0 -3.0 with the coumadin...it was 3.9 last week at our appointment, which is pretty high and puts him at higher risk for bleeding) and getting stool samples to the lab which was not easy (imagine using plastic wrap on a baby's bum for an afternoon, waiting for him to poo and then trying to get it into little plastic containers, it was pretty gross, kinda' stressful, but really funny looking back on it :)) We didn't know what was causing the bleeding and during the evening hours every diaper looked worse and at 1:30am he had one that was so awful I started to wonder if we would be back in the PICU sometime in the morning. That diaper was the climax of the whole thing, his diapers slowly started to improve and by this afternoon there was no blood and we haven't seen any since. We have done a few things but we don't know which of them stopped the bleeding or if it just stopped on it's own. First of all I stopped nursing in case he has an allergy to milk proteins. We gave him pedialyte until this afternoon when we started on soy formula. I have cut milk products from my diet and our pediatrician said that I can try nursing again tomorrow and we'll see how it goes. We also skipped last night's coumadin dose and started him on probiotics in case it is a bacterial issue. I don't know if any of these interventions are what stopped the bleeding, but I am just thankful that it seems to be over and we'll see what the rest of the lab results say about a bacterial infection tomorrow sometime.
Late last night I had been sharing some of what was happening with a friend we met in the PICU and this morning I woke up to the most encouraging message from her which helped to set a totally different tone than what I had ended the previous day with. God gave her the exact words I needed to hear and although I still struggled throughout the day, I kept going back to them. Her son has had a much more complicated journey than Judah, and hearing her encourage me to trust God is so powerful and humbling.
You know I as I listened to Jacobs dad tonight I realized how much I just wasn't there yet. I mean, I'm not really giving God the glory he deserves for saving Judah's life and giving me today and all of the days before today with him. The timing of tonights meeting was so perfect for me in my processing of everything. My friend's encouragement warmed me up, and in hearing Jacob's story I started to feel like in a way I was starting to heal...which wasn't even something I realized I needed...and I'm starting to know the goodness of God in a more powerful way.
It's almost 3 am but all I can think of right now is to be thankful. God has given me everything I've needed. I'm not sure if I said this in a previous post but shortly before Judah was born I heard someone say that God does sometimes give us more than we can handle so that he can show us that He is in control and will hold us, provide for us, and give us the grace we need in hard situations. This is so true for me tonight.
I'm also so thankful to all of you who have been reading our posts, praying for us, and leaving so many messages and comments both here and on facebook. I can't tell you how much every encouraging comment means. I've never met some of you, but your words have been so appreciated. I've been having a hard time going to sleep these past few weeks and I often sit up at night re-reading the comments on the blog and facebook and it has helped me a lot.
Well I'm sure I have forgotten half of what I meant to say when I began writing but I am going to stop for tonight, give Judah a bottle, and go to bed.
Thank you again and with all my heart, Praise God!
Kirsten
