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

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."

New Video

I just published a new video of Ryan on YouTube. Enjoy. Jared

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

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

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."

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

Chest tubes removed

Ryan had her chest tubes and arterial line removed today. She is still on a lot of IV meds but gradually improving everyday. We have set a goal to be home by Christmas. Thanks again for prayers, Jared

All closed up

The closure went well. Ryan is now recovering. Thanks for prayers! Jared

Chest closure confirmed

Ryan will have her chest closed up in about an hour. Pray for no complications. Thanks, Jared

Sternum closure

Ryan will have her chest closed up either tomorrow or Tuesday. We appreciate all the prayers. It's been amazing to see God work through so many people. Jared

Slow improvment

Ryan continues to remain stable as she recovers from her surgery. She still requires a lot of IV meds but she is holding strong. The plan is to close up her sternum on Monday. Jared

Long night

Ryan ended up going down to the OR at 1:30pm. She didn't return until 10:30pm. The actual procedure went well. The problem was when they took her off bypass, she lost her heart rate. At one point they were performing CPR and dumping EPI into her. We were told by our nurse and ICU Doctor to prepare for the worst. Well, she turned a corner and she is still here up in our room. We are by no means out of the woods but she is stable and slowly heading in the right direction. They did have to leave her chest open to give room for swelling. We hope to close the chest in 3 to 4 days. Thanks for prayers, Jared

Surgery moved

Surgery for Ryan has been moved to 2:30pm. Thanks, Jared

Nothing Hinders the Lord

Jonathan said to the young man who carried his armor, "Come, let us go over to the garrison of these uncircumcised. It may be that the Lord will work for us, for nothing can hinder the Lord from saving by many or by few." (1 Samuel 14:6 ESV)

We shall give the Lord room to work. We will not be wishful but hopeful, in eager anticipation of what God will do next.

Surgery Thursday

Ryan's surgery is scheduled for this Thursday at 12:30pm. Thanks for the prayers, Jared

Overwhelmed

Much thanks goes out to everyone who donated to us at the poker tournament. Michelle and I are both humbled by all of the support! May God bless you. Jared

Surgery Wednesday

Surgery for Ryan's heart is still scheduled for Wednesday. I will post the exact time as soon as I know. She has been holding steady and has not had anymore seizures. The MRI from this morning showed less swelling and no bleeding. Thanks for the prayers and support. Jared

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1st Thes 5:16-18

Full heart repair

Ryan is tentatively scheduled for her full heart repair next Wednesday(not tomorrow). Please pray for Michelle and I as we sit down with both surgeons to discuss the plans. Please pray that God gives us the right words to say. This will be huge because we will be deciding who will be the primary surgeon for Ryan as she undergoes a major heart surgery. This meeting takes place tomorrow. We also ask that you pray for no more setbacks. Ryan currently has had only one seizure since her stroke and none in the last 72 hours. Thanks again for your prayers and support. Jared