Saturday, August 16, 2008

The Kingdom of Heaven Belongs to Such As These...

"Jesus said, 'Let the little children come to me, and do not hold them back, for the Kingdom of Heaven belongs to such as these.'"
Matthew 19:14



As I type this, "my" angel baby is getting to be held, his favorite thing, for the first time in 4 weeks... and held by Jesus. He passed away today and for the first time in his life is able to be a whole and healed little boy, no longer having to fight, but breathing deeply the air of Heaven. To say that my heart is breaking feels like an understatement, and yet I have been asking God to take him for weeks in the midst of his suffering. I have shed so many tears today, most because of how much I will miss him, but at the same time, tears of joy that he isn't bound by his broken body any longer.

July 29th was really the night where he and I said goodbye to each other. It was the last time I saw him open his eyes, and it was the night that he shed his two tears as I shed mine. I feel like God so clearly told me then that he was not meant to be ours for much longer, and that he was getting ready to go. My one regret is that I didn't get to be with him on the day he died. It was the first time in the 8 weeks of being hospitalized that I hadn't been able to see him, because when he passed away I was on a plane crossing the Atlantic for my first visit back to the States. I arrived in California today. In truth, I didn't want to come back right now with him in the hospital. When I last visited him on Wednesday, as I was leaving the ICU, I turned back for one last look, knowing somehow that I wouldn't see him again.
In the nearly 6 months that we had him, everyone fell absolutely in love. He gave us a bigger view of God and because of his life, I trust God beyond any measure that I ever have before... He is already so missed...

Saturday, August 9, 2008

Waiting to See What God Will Do...


This is a photo of our sweet miracle baby that I took this morning. My heart is just breaking for him that this is what it has come to for him. Amazingly enough, he is actually doing okay, relatively speaking. His heart has stayed perfect ever since his surgery, his trachea is now perfect as well, and his lungs are improving every day. The problem we face now is that he has a raging infection in his body that is not responding to any of the medications that the doctors are throwing at it. Thankfully he remains sedated (for over 3 weeks now) so hopefully he is not feeling any of what is going on around him.

Yesterday I actually thought I was going to need to sign the forms giving consent for him to be removed from life support. He had crashed on Monday, but then was doing okay until Wednesday. On Wednesday his phenomenal pediatrician, who has been my encourager through all of this (always saying "It's not time to worry yet, I'll let you know if we get to that point), was the one to say that she thought the writing was on the wall that we were going to lose him. I had actually come to a place of peace with that outcome even before I heard it from her. There had been one night last week where he had kept his eyes open, watching me, for the whole half hour of visiting that I was allowed to have. It was the first time he had kept his eyes open and he just watched as I talked to him, sang to him, and prayed with him. As I prayed, asking God to free him from this pain whether it was through healing or going to Heaven, I looked at his face and there were two tears running down his cheeks. Of course that brought many more than two tears from me as I hadn't seen him cry throughout any of this.... Back to my story, so when the doctor said she thought we would lose him, I felt that I had made my peace with that a week earlier during my time with him since I just could not stand to see him suffer anymore.
On Thursday, the doctor phoned me saying he'd had a terrible night and an awful day and she thought that it was time to do one final assessment and then let him go. She asked if I could come Friday morning (yesterday) to be there to sign the consent form since we would likely end up taking him off of life support.
So I arrived yesterday morning and she examined him with another specialist and they found that his vital signs had improved overnight to the point where he was actually doing very well aside from the infection, and they didn't want to give up on him yet. I actually got in the car and cried after finding that out because I had really becoming settled with the fact that he would finally get to be whole and healed with Jesus and now felt like we were going to continue putting him through this horror.
The thing is, he's still fighting. Though he's not awake, every time he hears our voices, and anytime we touch or kiss him, he squirms and wiggles. So... now we pray for this wretched infection to leave so that he can continue on the road to recovery. His doctor has put a "do not resuscitate" order in place, and has promised me that we will not put in any more drainage tubes (like the ones you can see leading to the bag on his stomach to try and relieve his distended abdomen) or do any more invasive procedures. So if he crashes again like he did last Monday, he will get to be with God. I am praying that there will be resolution one way or the other before I leave for the US next Friday since I can't imagine leaving him like this. I've been with him every day for nearly 7 weeks now and I am going to have such a hard time if he passes away and I am not here. So please just pray for quick healing for my baby boy! :o)
Okay... gotta go, but wanted to put up an update!
See ya'll soon!

Friday, August 1, 2008

Every day is so different!

Hi all!

So, after the craziness of last week, I have so enjoyed this week... It has held sad things, and frustrating things, but over all of that have been the really great things. The overarching feeling for this week has been thankfulness for the people I am surrounded by here. God really has put together such an amazing community for me over here! Beth arrived on Tuesday (one of the friends I worked with in our office in the States - she's here to stay too! YAY!) and has just added to the amazing people I get to work with every day. They bring so much laughter as we tell stories about the kids and make fun of each other mercilessly... definitely the BEST way to relieve stress!! I love that so many of the people I work with are not afraid to be ridiculously funny. :o) This week has held so many great conversations with friends over lunches, dinners, and car rides that I am just feeling so blessed.
The hardest aspect of the week has been that the second attempt to take the baby off of the ventilator failed as well. After being told some wrong information by a nurse I was afraid we were just dragging out the inevitable fact of loosing him and walked into his doctor's office with tears streaming down my face feeling like we were just torturing this little boy. Thankfully, she assured me that the nurse was wrong and that there is no physiological reason for why he shouldn't be breathing on his own. Of course, this is still concerning, but it is good to know that all of the operations have been successful and that he now has a perfect airway that (once he realizes he can't depend on a machine) should work well! Tomorrow they will put in a "peg" where we will have to inject his food directly into his stomach for the next 6 months. The misinformation that the nurse had given me was saying that he would never be able to eat again, which, being his FAVORITE thing, made me feel like we were taking away everything that brought him the most joy. The truth is that the doctors don't WANT him to swallow for about 6 months because they are afraid that he will choke while the airway is healing. Six months is definitely better than FOREVER! So, please pray that when they make a third attempt at getting him to breathe on his own next week that it works!!!
Funny kid story of the week: One of our four year old little girls was too sick when she was two to actually go through the "terrible twos" and has always just been a little angel. Now that she is healthy however, she seems to be making up for lost time!!! Ever since her 4th birthday in July, she has been quite a handful. This week, she found a pair of scissors in the backpack of one of her big sisters and really went to town on cutting her own hair. Mind you, this is the third time in a month, but DEFINITELY caused the most damage! As a result of our little hair stylist's creativity, her whole head had to be shaved! It was the funniest thing I have ever seen to see her walking around bald telling people "I cut my hair!" with her little speech impediment (HIV has caused near-continuous ear infections that have destroyed her eardrums. Now that she is healthier, she will be having eardrum grafts this month and getting hearing aids, but as a result of 4 years of not being able to hear, she can be a little hard to understand at times!)
So... that's all for now and I am going to head off to bed!