Monday, November 28, 2011
Tracheostomy
We decided today to move forward with the tracheostomy. This will be a lot less of a risk for Ryan compared to her recent surgeries. Michelle and I have been very reluctant to go with the trach. The reason being because it will require even more from us when we get home. But ultimately it will be the best option for Ryan right now. It will provide her with the secure airway that she needs. The trach will most likely come with a vent and will require at least a week of training for Michelle and I. The vent will require alot from us, so when we do get home we will also need home nursing care so that we can work and sleep. Our home is our sanctuary and now we may be sharing it with a stranger. It's a lot for anyone to process. Please pray for us as we continue to make extremely difficult decisions for our baby girl. We are definitely scared of how much our lives will be changed when we do get home but we know that our Lord will see us through one day at a time. Jared
Sunday, November 27, 2011
Laments
Hi there,
Today has been a good day for Ryan however there were more intense talks today about Ryan getting a trach. I have hoped against this day since she was born but as we move along this path with Ryan it is starting to make more and more sense for her. However thinking through that I am having a hard day. I cant help mourning over the hopes I had for her. Eventhough the trach could be temporary, it still hugely affects our lives at home and it puts Ryan back in for another surgery...but at lease we are talking about home...but I am nonetheless sad about this today. I think I keep waiting for that "break" to happen and to turn that corner and it sometimes seems to be farther off than I would hope. And I have been struggling with wanting to be strong and trust God with her and us completely versus just having real emotions and sadness. Then I went to the only place I can to find rest and comfort...God...and read this today from my quiet time book...
"Seventy percent of the Psalms are laments. These laments either originate in or are derivative from the praying life of David. David faces loss, disappointment, death. He neither avoided, denied or soft-pedaled any of it. He faced everything and he prayed everything.The craggy majesty and towering dignity of David's life are a product of David's laments."
This relaxed me into being ok to have sad or off days where I mourn for Ryan and things she has faced and quite possibly might face in her near future as well as renewed my hope in God. God has a plan and eventhough we keep waiting for that "break", God is still working and we need to be patient to see that work completed no matter what that might bring. We have to hold everything up to his refining fire and trust the outcome. We have to rest in His goodness and overall divine plan and just put one foot in front of the other. I cannot look too much in the future and try to speculate what that might look like for Ryan....for us. But rather look for God's hand in the moment and know that His plan is far more spactacular than any plan I could hope or imagine for Ryan and for us.
Thanks for letting me work through this with you guys. -michelle
Luke 19:41-22,44
"When the city came into view he (Jesus) wept over it. 'If you had only recognized this day, and everything that was good for you! But now it's too late...All this becasue you didn't recognize and welcome God's personal visit."
Today has been a good day for Ryan however there were more intense talks today about Ryan getting a trach. I have hoped against this day since she was born but as we move along this path with Ryan it is starting to make more and more sense for her. However thinking through that I am having a hard day. I cant help mourning over the hopes I had for her. Eventhough the trach could be temporary, it still hugely affects our lives at home and it puts Ryan back in for another surgery...but at lease we are talking about home...but I am nonetheless sad about this today. I think I keep waiting for that "break" to happen and to turn that corner and it sometimes seems to be farther off than I would hope. And I have been struggling with wanting to be strong and trust God with her and us completely versus just having real emotions and sadness. Then I went to the only place I can to find rest and comfort...God...and read this today from my quiet time book...
"Seventy percent of the Psalms are laments. These laments either originate in or are derivative from the praying life of David. David faces loss, disappointment, death. He neither avoided, denied or soft-pedaled any of it. He faced everything and he prayed everything.The craggy majesty and towering dignity of David's life are a product of David's laments."
This relaxed me into being ok to have sad or off days where I mourn for Ryan and things she has faced and quite possibly might face in her near future as well as renewed my hope in God. God has a plan and eventhough we keep waiting for that "break", God is still working and we need to be patient to see that work completed no matter what that might bring. We have to hold everything up to his refining fire and trust the outcome. We have to rest in His goodness and overall divine plan and just put one foot in front of the other. I cannot look too much in the future and try to speculate what that might look like for Ryan....for us. But rather look for God's hand in the moment and know that His plan is far more spactacular than any plan I could hope or imagine for Ryan and for us.
Thanks for letting me work through this with you guys. -michelle
Luke 19:41-22,44
"When the city came into view he (Jesus) wept over it. 'If you had only recognized this day, and everything that was good for you! But now it's too late...All this becasue you didn't recognize and welcome God's personal visit."
Saturday, November 26, 2011
Improving
We were so thankful when we got to the hospital today. Ryan had a good night and seems to be headed in the right direction in her long road to recovery. She has been peeing like a champ and is noticeably less puffy. For the first time in a week we have been able to start weening the ventilator. We so want to be home by Christmas. Please pray specifically for this. Thanks, Jared
Friday, November 25, 2011
1 step forward 2 steps back
The ups and downs of having a very sick baby in the hospital can be very challenging. Over the last 4 to 5 days we have had a difficult time getting Ryan to rid herself of excess fluid. Along with the swelling, her tummy has been very distended and tight. This lead infectious disease to start antibiotics as a precaution in case she had developed an infection. As of today they don't think she has an infection and they plan on taking her off of the antibiotics tomorrow. She was also taken off of breast milk and put on infoport. Infoport is a manufactured nutritional supplement. The reason for the switch is because the fat in the breast milk can cause her problems with her thoracic duct. Ryan seems to be doing better today but she is still pretty swollen. We hope to get her swelling down soon so that we can start to make progress in other areas. Thanks for the prayers, Jared
Sunday, November 20, 2011
Restless Day
Michelle here.
We have had one of those days that you wish you could just start over. It is not like anything horrible has happen today but just a collection of little things that somehow wear you thin. It amazes me at times that we can come out from such a huge event where God clearly showed his power, grace and love and how easily you can stray into trying to control, worry or figure things out again on our own. God obviously has this and Ryan yet we still cling to having a role bigger than just resting in Him and loving her. My mom sent me this reading last night and I re-read it today and I found encouragement in its words..."Leave outcomes up to me. Follow me wherever I lead, without worrying about how it will turn out. Think of your life as an adventure, with me as your guide and companion. Live in the now, concentrating on staying in step. When our path leads to a cliff, be willing to climb it with my help. When we come to a resting place, take time to be refreshed in my presence. Enjoy the rhythm of a life lived close to me."
We have had one of those days that you wish you could just start over. It is not like anything horrible has happen today but just a collection of little things that somehow wear you thin. It amazes me at times that we can come out from such a huge event where God clearly showed his power, grace and love and how easily you can stray into trying to control, worry or figure things out again on our own. God obviously has this and Ryan yet we still cling to having a role bigger than just resting in Him and loving her. My mom sent me this reading last night and I re-read it today and I found encouragement in its words..."Leave outcomes up to me. Follow me wherever I lead, without worrying about how it will turn out. Think of your life as an adventure, with me as your guide and companion. Live in the now, concentrating on staying in step. When our path leads to a cliff, be willing to climb it with my help. When we come to a resting place, take time to be refreshed in my presence. Enjoy the rhythm of a life lived close to me."
Saturday, November 19, 2011
Quick Update
Ryan is doing well. She is being fed with mommas milk for the first time in months. Her chest is healing well and we continue to slowly ween her off of the IV meds. She is still intubated but we are confident that we can get her extubated. But if we need the trach then we will be fine with that. Thanks for all the prayers and support. Jared
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