Our God is Great!

Posted by Erin Wilson On Friday, July 10, 2009 0 comments
Things don't change around here very fast these days, which is good, but leaves me with not much to say.. Josiah continues to breath with the help of Vapotherm (more support than a regular nasal cannula). They were going to try on Wednesday night to switch him over to a nasal cannula but before they could do that he started showing signs that he was having to work harder to breath. Yesterday, Josiah continued to have to work hard to breath, so the gave him more support from the vapotherm. He seems to be doing better today. In fact Dr. Atz said he had his best chest x-ray of his life today! His lungs just aren't strong enough yet and so he has strong days and weak days. Wednesday they pulled his feeding tube out of his small intestine and into his belly he did well keeping his feeds down until yesterday and then he started throwing up. So with his difficulty breathing they decided it was more important for him to keep his calories and have more energy so the pushed the feeding tube back into his small intestines. So today is a rest and recover day, a don't do much different day. The goal is just to keep him comfy and keep his feeds going so that he can continue to beef up as Dr. Atz likes to call it.

I know lots of people are asking us and wondering about a time line for us. We wonder that too but know that no matter what we will continue to wait patiently for and trust in God's timing to bring him home. That said I have asked a couple of people for a potential time line and what I have gotten is that with babies as critical as Josiah and our friends Addie and Tagg have been, that the doctors are very cautious in sending them upstairs to the step down unit. We have to continue to working on him keeping feeds in his belly and wait on his lungs to get strong enough to come of the vapotherm, wait for the chest tube drainage to stop, and stay infection free while we wait.

Milo and I continue to praise God for how far He has brought Josiah. We are so blessed to have experienced so many miracles first hand in the past weeks. We were unfortunately reminded of the fragility of Josiah's precious life last week. Back when we started this journey we were giving a 45- 50% chance of survival. I think I tired not to believe that for a while but last week we were told that there was a baby being born with Josiah's exact same diagnosis the following day. HLHS with an intact atrial septum is very rare. The cath lab doctors that did Josiah's emergency procedure the day he was born told us that he was the 5th one they had done in 18 years. So to have another baby being born so close to Josiah was pretty amazing. The following day Milo and I prayed and prayed for this child and family and waited and waited to see a newborn come back from the cath lab and we never saw one. I went to bed that night praying for that family, hoping that something had come up and they put the mom's c-section off for some reason. I asked one of our nurses the next day if they knew what had happened and we were told that the child did not make it through the cath lab procedure. That was really hard to hear. I don't know why or understand at all why Josiah is with us and this family is dealing with the grief of loosing their child. I can't begin to understand or explain that. All I know is that I am incredibly grateful for my baby boy and praise God for the miracle he has given us. I continue to pray peace and comfort for this family I've never met. If you feel led please pray for this family too.

I've been reading a book called "Crazy Love", by Francis Chan. A passage I read just moments ago struck me and so I thought I'd share it.

"Maybe life's pretty good for you right now. God has given you this good stuff so that you can show the world a person who enjoys blessings, but who is still totally obsessed with God.
Or maybe life is tough right now, and everything feels like a struggle. God has allowed hard things in your life so you can show the world that your God is great and that knowing Him brings you peace and joy, even when life is hard."

I pray that my life with show that not because I can put on a good act but because I truly feel that in my heart. Our God is great!

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