Ryan Lynn updates

The Final....Final Post

2012-01-31T14:40:00.000-08:00

Ok I can't end this blog without saying this...if you were at all inspired by Ryan's story, then PLEASE don't miss the true inspiration. That true inspiration is only found in Jesus Christ. He is the only reason we praise God through whatever life may throw our way. We believe Jesus is the only way to God and His death and resurrection made it possible. Salvation is a free gift, all you have to do is repent and turn from your sin and follow Him. It's the only way to live. Once again, if you were inspired by Ryan, it doesn't have to end. Because when you saw the love our family had through the recent trials we faced, who you really saw was Jesus. Jared

Also, new video on YouTube of Ryan.

Final Post

2012-01-29T15:13:00.000-08:00

This will be the last time I post any comments to this blog. Thanks again to all of you who were so invested in our family. The support whether through prayer or giving continues to amaze us everyday. I thank God for you all. If there is a need for additional updates of any kind I will use my twitter account: @CliffordJared. God Bless, Jared

Funeral Services

2012-01-25T18:31:00.000-08:00

The funeral for Ryan will take place on Friday morning at 10am. Services will be held at Palm Valley Church. Doors will open at 9:30am. I anticipate the services to last about 30 to 45 minutes. After a 30 minute meet and greet we will promptly head to The Church Of Joy where Ryan will be layed to rest. Directions to Palm Valley: take I10 to Litchfied and head south. The church will be on the east side of road before you get to Van Buren. Directions to The Church Joy will be provided at the services. Hope to see you there. Jared

The Lord Gives and the Lord Takes Away

2012-01-24T08:32:00.000-08:00

It is with overwhelming sadness that i write today. Ryan Lynn Clifford passed away early this morning. She was only 6 months old. Words can't begin to describe the excruciating pain that Michelle and I both feel. We spent hours at the hospital this morning trying to say goodbye. They basically had to make us go after almost 7 hours of holding her. It's so incredibly hard when you know that this is the last time you will ever hold your baby again. Please pray for us In this extremely difficult time. We will use the blog to provide everyone with updates on funeral arrangements. God Bless, Jared

And he said, "Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord." (Job 1:21 ESV)

Flu/RSV Season

2012-01-22T12:13:00.000-08:00

Hello everyone. Michelle and I just wanted to let you all know that due to the seriousness of Ryan's condition and the fact that we are still in the middle of cold and flu season, we have been instructed by our pediatrician to be extremely limited on visitors coming to the home. Nothing would make us happier right now than to have friends and family over to see little Ry. But right now it is simply not safe. Thanks so much for understanding. We are so grateful for the overwhelming amount of support! Jared

Update from Home

2012-01-21T15:34:00.000-08:00

With the busyness of home life and the fact that Ryan takes pretty much all of our time, I have not been able to update the blog as often as I would like. But I will try my best to at least give weekly updates. Well let me start by saying that being home is much better than living at a hospital with the lack of privacy, frequent travel, and time away from Michelle that came along with it. That being said, being home has been tough. Ryan is doing well but it is a daunting task to take care of her on a daily basis. She requires meds around the clock and maintaining/managing her equipment is an ongoing process. Though we couldn't be more excited and thankful to finally have our baby girl home, it doesn't take away the struggles we face trying to give her the best care possible. Please pray that home nursing care will work out for us. We are looking to have help for just 2 nights a week so that Michelle and I can get out of the house together. We need someone that we can really trust wholeheartedly. We are very picky and do not want to leave Ryan with just anybody. Also pray that Michelle and I will make it a priority to spend time with God and each other. With the stress that comes along with bringing home a sick baby, it's been easy to forget the importance of these things. And of course pray for Ryan as she continues to fight as we travel down this difficult road. Thanks, Jared

New Video

2012-01-14T18:34:00.000-08:00

Ryan is finally home and doing well. It brings new challenges but we are so excited about what the future holds! God is good. Check out a new video of Ry on YouTube. Search Cliffy2120.

Going home today!

2012-01-09T06:50:00.001-08:00

We will be leaving PCH today at 11am via ambulance. It's amazing how far Ryan has come. Praise God. Jared

Update

2012-01-01T18:20:00.000-08:00

Happy New Year! We now have an official date for taking Ryan home. Baring any setbacks, we will go home on Monday the 9th. Thanks so much for the prayers. We can't begin to express how thankful we are. Take care, Jared

Close to Going Home

2011-12-29T18:35:00.000-08:00

I'm sorry that we have not been updating the blog lately. However it really is a good thing. Michelle and I have been so busy getting trained up so that were ready to go home that it's been nearly impossible to find time to do anything other than focus on Ry. But we wouldn't have it any other way! We are so excited about the real possibility of going home. We even have a tentative date of January 12th. Thanks again for all of the prayers and support! We feel so blessed to have so many people who continue to be invested in our family. Honestly it blows us away! Please continue to pray for us as we get prepared to make the transition home. It will come with new challenges. But as long as we stay close to the Lord, we will be just fine. Take care, Jared

First Trach Change

2011-12-26T13:04:00.000-08:00

Michelle and I did our first trach change on Ryan this morning and it could not have went smoother. We are getting closer and closer to reaching the day when we finally get to go home! What a journey it has been and will continue to be and we wouldn't have it any other way. God has forced us to depend fully on Him and I thank Him daily for that. He has given us a platform to share our faith and bring Him glory, and for that we are grateful. We are honored that He entrusted us with Ryan. Take care, Jared

New Video

2011-12-25T20:06:00.000-08:00

Hey everyone. Hope you all had a very Merry Christmas! We had an awesome day with Ryan. Enjoy the new video of Ryan on YouTube. Search Cliffy2120.

Update

2011-12-22T23:23:00.000-08:00

Hi all :)
We are so sorry that we have not sent out an update in a little while. But Ryan is a little rockstar! She is off her Ketamine drip, which was a HUGE feat! We are currently weaning her last two drips and then we can just focus on her vent and trach training and then...HOME!!! No date mentioned, but the discussion of home is out there!! Ryan has been also doing some awesome baby things as well as she daily feels better and better. She smiles, cries and batts at toys. Reaching for a toy is a little bit of a struggle for her, but it is so sweet to see her little arm shake as it raises up to touch the rattle. She is just so determined and strong!! She is also taking a pacifier here and there which is so sweet to see.
On a side note we just feel so blessed to be able to spend Christmas with her!! A few months ago we could not even imagine coming out and through all that we have and God has carried us and her through it all. We still have a road ahead of us, but we know God will carry us through just as He has so far. God is so gracious. -M

Latest on Ryan

2011-12-18T08:06:00.000-08:00

Ryan continues to do well as we work on weening her drips. She will be off of the Ketamine at the end of the day. The first trach change will be tomorrow. After that Michelle and I will be able to begin learning what we need to learn to get home. I think it's very realistic to say that we should be home sometime in January. Thanks again for all the prayers and support.

New Video

2011-12-15T16:51:00.000-08:00

There is a new video of Ryan with her trach on YouTube. Take care, Jared

Tracheostomy went well

2011-12-14T12:30:00.000-08:00

Ryan is now back in her room relaxing. Take care everyone, Jared

Special Thanks

2011-12-13T19:19:00.000-08:00

Thanks goes out to the Texas gals who sent all the goodies! We were so happy to receive the package. Thanks Rhonda, Kathy, Tracy, and Betty. You women are awesome. I got my eye on the peanut butter fudge! God Bless, Jared and Michelle

Steadfast heart

2011-12-12T23:10:00.000-08:00

Hi there all,

I read these two poems and I found them inspiring and thought I would share :)

"Give me, O Lord, A steadfast heart, Which no unworthy affection may drag downwards; Give me an unconquered heart, which no tribulation can wear out; Give me an upright heart, which no unworthy purpose may tempt aside. Bestow on me also, O Lord my God, understanding to know You, diligence to seek You, wisdom to find You, and faithfulness that may finally embrace You, through Jesus Christ our Lord."
-Thomas Aquinas

"Many a questioning, many a fear, Many a doubt hath its quieting here. Moment by moment, let down from heaven, Time, opportunity, guidance are given. Fear not tomorrows, child of the King- Trust them with Jesus. Do the next thing!"
-Elizabeth Elliot

Thanks for your continual prayers!! -m

Tracheostomy tentatively scheduled

2011-12-12T15:30:00.000-08:00

Ryan has shown vast overall improvement in the last week. We have been able to decrease the swelling in her tissue and are now back to trachable settings on the ventilator. Her tracheostomy is scheduled for Wednesday morning at 8am. On another note, we met last week with a couple of the reps who are responsible for providing home nursing care. We were very impressed with them and we will begin interviewing possible candidates on Wednesday. Please pray for this process. It's a big deal because these nurses will be living with us at least one third of the time. Thanks as always for the abundance of prayers and support. Jared

Fun Facts

2011-12-08T23:04:00.000-08:00

Hi there,
So, here are some fun facts about Ry...
1.) She LOVES her head rubbed!!
2.) She LOVES blankets or washcloths on her head
3.) She is most at peace when she is being talked to...especially sweet talk
4.) Her favotite book is Goodnight Moon
5.) She HATES dirty diapers!
6.) She Loves to be sang to and listening to music
7.) When I give her a bath and I am washing her leg she stretches out her legs for me
8.) She sucks on her tube all the time
9.) She loves to hold hands
10.) She loves having me talk to her super close to her face (even with stinky breathe :))
I thought it would be nice to share the sweet little details of Ryan along with all the updates we send out.
Thank you for all your prayers!
M

Perseverance

2011-12-07T10:50:00.000-08:00

Ryan is slowly moving in the right direction. We hope to get her back to the point where she can get the trach. From a respiratory stand point, she is not quite there yet. Please pray that Michelle and I don't grow weary. I'm having one of those days where I'm just flat out frustrated with everything. Though this experience is very rewarding, at times it can completely exhaust you. And there are moments when you don't think you have the strength to keep going. The toll that this takes on you physically and emotionally simply can't be overstated. Please pray that God will continue to get us through this one day at a time. Jared

Tracheostomy moved back

2011-12-05T13:01:00.000-08:00

Due to the set backs with Ryan's swelling and being forced to increase her vent settings, the tracheostomy has been moved back. Hope to get it done next week. She has been improving over the last few days. One day at a time. Thanks for all the prayers and encouraging comments. Jared

Psalm 16:8-9, 11

2011-12-04T17:21:00.000-08:00

Ryan is a continual surprise. Today they threw some challenges at her and she rose to the occassion. I was so anxious this morning when they made thier plans for her today. I sat with my head in my hands and worried that this could set her back once again. She just has not been handling change well and I had hoped we could have a few days for her to settle before we start challenging her again. So, Jared and I prayed and put her back in God's hands because nothing escapes Him and His plan. God showed me that He is bigger than anyone's plans and my anxieties for nothing is impossible for Him! She took thier challenges and rose to meet them.
Psalm 16:8-9
"I keep the Lord always before me; because he is at my right hand, I shall not be shaken. Therefore my heart is glad, and my soul rejoices; my body also rests secure. You show me the path of life, In your presence there is fullness of joy; in your right hand are pleasures forevermore."
-Michelle

A new day

2011-12-03T23:05:00.000-08:00

Hi there,

Michelle here. :) So, today has been a better day. We prayed that God would give us a sign last night which direction we need to support Ryan and it has been clear that she is a fighter and that we need to fight right alongside her still. She has dramatically turned around over the last 24hours and we praise God and thank you all for your prayers!! We are by no means out of the woods and she still needs to still overcome some milestones, but we are headed in a clear direction and we praise God!!!

I read this today and I found this encouraging...

The great thing about life being somewhat messy is that you are "held there by hope, knowing how God's creativity works, slowly, slowly, slowly, but always with surprise. Creation, creative work, never ends up the way we thought it would. It is always a surprise. Creative is by definition something new, and if we knew what the result was we might not be creative." Living the Message

I Corin. 13:12
"We do not yet see things clearly. We are squinting in a fog, peering through a mist. But it will not be long before the weather clears and the sun shines bright! We will see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us."

Family Meeting

2011-12-02T15:15:00.000-08:00

We had another Family/care team meeting earlier today. What we discussed is something every parent dreads. We talked about preparing ourselves for the real possibility of losing Ryan. We thought that when we repaired her heart that she would excel and improve to the point that we would get her home. Well things don't always work out the way you wish they would and Ryan is not getting better. Her heart and lungs are still very sick and with the chromosome abnormality that she has, its hard to predict how she will respond next. After the meeting Michelle and I left the room and prayed. This was such a precious time that helped us realign with God and each other. We have decided to continue to fight for her till the end and we are still praying for a miracle! I credit all of the amazing comments that have been sent to us that always seem to encourage us in our time of need. Michelle and I are going to pray with Ryan tonight and tell her that it's ok if she needs to let go. This will be very difficult for us but she needs to know that we will be ok. So I ask you all to please pray for this time that we spend together. Thanks again for all the prayers, Jared

Struggling

2011-12-02T07:12:00.000-08:00

Hello all. Ryan has struggled off and on for the last week but has now become more serious. She is not urinating and has become very swollen. She also has extremely poor lung compliance. To me she looks as sick if not sicker than I have ever seen her. Pray for her to be healed but above all else please pray for God's will. Jared

Tracheostomy scheduled

2011-12-01T16:19:00.000-08:00

The tracheostomy is scheduled for Monday at 7am. This will be the simplest and least invasive procedure that Ryan has had. Thanks for prayers, Jared

Tracheostomy

2011-11-28T19:54:00.000-08:00

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

2011-11-27T12:15:00.000-08:00

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

2011-11-26T16:42:00.000-08:00

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

Improving

2011-11-26T15:21:00.000-08:00

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

2011-11-25T09:40:00.000-08:00

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

2011-11-20T16:03:00.000-08:00

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

2011-11-19T15:06:00.000-08:00

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

2011-11-16T15:29:00.000-08:00

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

2011-11-14T14:46:00.000-08:00

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

Chest closure confirmed

2011-11-14T11:11:00.000-08:00

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

Sternum closure

2011-11-13T18:33:00.000-08:00

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

2011-11-12T13:15:00.000-08:00

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

2011-11-11T07:53:00.000-08:00

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

2011-11-10T11:03:00.000-08:00

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

Nothing Hinders the Lord

2011-11-09T23:28:00.000-08:00

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

2011-11-08T06:25:00.000-08:00

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

Overwhelmed

2011-11-06T19:16:00.000-08:00

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

2011-11-03T21:42:00.000-07:00

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

2011-11-01T19:17:00.000-07:00

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

Full heart repair

2011-10-29T20:02:00.000-07:00

Ryan is still a candidate for a full heart repair but it will obviously be put on hold until she is fully recovered from the stroke. Take care, Jared

Latest on Ryan

2011-10-29T19:59:00.000-07:00

She has done really well over the last day and a half. Only one seizure, which is good. Seizures were to be expected after the CVA(stroke). We will continue to monitor her brain over night. Please pray that the swelling continues to go down and that we have no bleeding in her brain. Much love to you all. Jared

Stroke

2011-10-28T09:19:00.000-07:00

The seizures were caused by a stroke. How much the stroke affected Ryan is unknown. We will just continue to manage the seizures. We have our weekly care team meeting today and our big question is how the stroke will affect Ryan getting her full heart repair surgery. Please pray for us. Jared

Seizures/CT Scan

2011-10-27T20:28:00.000-07:00

Ryan had multiple seizures this evening and is going down for a CT scan to check for possible damage to her brain. She is doing good now. Please pray for her and us. God Bless, Jared

Hope

2011-10-25T19:40:00.000-07:00

Hi there,

Michelle here. :) I just wanted to share some thoughts on hope that I read recently that encouraged us both...
"It is essential to distinguish between hoping and wishing. Wishing is something that we want or think we need in the future. Just because we wish for something good or holy we think it qualifies as hope. It does not. Wishing extends our egos into the future: hope desires what God is going to do - and we don't yet know what that is. Wishing grows out of our egos and; hope grows out of our faith. Hope is oreinted toward what God is doing; wishing is oreinted toward what we are doing. Wishing has to do with what I want in things or people or God; hope has to do with what God wants in me and the world of things and people beyond me. Wishing is our will projected into the future, and hope is God's will coming out of the future. Hope means being surprised, because we don't know what is best for us or how our lives will be completed. To cultivate hope is to suppress wishing - to refuse to fantisize about what we want, but live in anticpation of what God is going to do next. Hope affects the christian life by making us expectant and alive. People who hope never know what is coming next. They expect it is going to be good, becasuse God is good. Even when disasters occur, people of hope look for gow God will use evil for good. A person with hope is alive to God. Hope is powerful. It keeps us on tiptoe, looking for the unexpected. "

Back from Cath

2011-10-25T11:50:00.000-07:00

Ryan just returned from the OR and she did well. They were able to balloon open her pulmonary arteries which we hope will give her better blood flow to her lungs. Right now we have to wait 3 to 4 days to see how she responds. At that point we will decide whether or not she needs her full heart repair now or later. I will continue to update with new info as I receive it. Thanks, Jared

Cath tomorrow morn

2011-10-24T22:12:00.001-07:00

Cardiac cath has been moved to tomorrow morning at 7:30am. Thanks in advance for your prayers. Jared

Update

2011-10-24T15:37:00.000-07:00

The cardiac cath has been moved to Thursday. As I mentioned before, this will reveal accurate pressures in and around Ryan's heart. We also learned that her BT shunt is completely occluded but Ryan's oxygen Sat's remain high. This means that she is getting good pulmonary blood flow without the shunt. This is great news. Hopefully the cath will reveal good enough pressures and she will not need a stint. Thanks for all the prayers. Jared

Cardiac Cath

2011-10-20T20:15:00.000-07:00

Michelle and I had our weekly care team meeting today. The current plan is to get Ryan to the OR on Tuesday for a cardiac catheterization. This will give us a good look at the pressures in her heart. Also, due to the blockage of her BT shunt they will be placing a stint in her shunt and also one in her pulmonary valve. This will assure us that she is getting the appropriate blood flow to her lungs. Once she has a few days to recover we will continue with our last attempt at extubating her. If she is unsuccessful then we will move forward with the tracheostomy. We are looking at another month or two in the hospital but at least there is discussion about going home. Thanks for all the prayers, Jared

Last shot at extubation

2011-10-19T15:22:00.000-07:00

We are at the point where this will be our last go at attempting to get Ryan extubated. Honestly, it will be difficult. She has been intubated for so long that our team of doctors are not giving her a chance to be weened and they think that a tracheostomy is imminent. We are prepared for a trach but we believe she can be weened. Michelle went to battle with the Chief Doc just to get one more chance to try to extubate. So I'm asking you guys to pray big that she will be successful! Nothing is impossible with God and we have witnessed the power of prayer over and over again. We will continue to be hopeful in Him. Thanks in advance for all the prayers. Jared

Chest tube removed

2011-10-17T00:56:00.000-07:00

Ryan had her chest tube removed yesterday. This tube had been in her chest for a month. We thank God for this answered prayer. Jared

Thanks again

2011-10-15T19:56:00.000-07:00

Just want to say thanks to everyone who was involved with the bunko night. I'm telling you that it was pretty exciting to see the amount of cash that was raised for Michelle, Ryan, and I. It was right around $1200 and I just got a bill in the mail 3 days ago for $1140! Pretty amazing how God works. I'm so grateful to all of you for your prayers and support. We are so humbled by it all. On another note, Ryan continues to do well. They have taken the possible fungal infection off the table. And the tube in her chest is draining less and less everyday. It should be out in a few days. She has been able to continue weening off of the vent and she has been taking her pacifier. The albuterol treatments are now only every 4 hours. She did however have an echocardiogram that revealed that her shunt may be partially occluded. This would mean that she may have to have her full heart repair earlier than expected. This would be doable but not ideal. We really need to get her off the vent so we can get her home. Please pray specifically that the shunt is not blocked. If the shunt is blocked, it could also mean that we would have to consider a tracheostomy. The reason this is being considered is that since she has already been intubated for so long, she is missing out on normal developmental milestones. Thanks again to you all. We are so blessed. Jared

Good Day

2011-10-12T23:11:00.000-07:00

I'm excited to say that Ryan has done very well over the last 24 hours. Last night was uneventful and that's a good thing. She continues to get the albuterol treatments but the dosage needed continues to decrease. Also, the fluid draining from her chest tube has finally started to decrease. Fungal cultures are still negative and tomorrow we are having a family care meeting to discuss where we go from here. It has also been on our hearts to have a pastor from our church come up and pray for Ryan, so we did that today. It was definitely impactful! He was so encouraging to us. His daughter has leukemia so he can really relate to our situation. When he layed hands and prayed for Ryan we could feel the power of God working through him. And she looks better now than she has in days. Simply put, God hears our prayers. We continue to be amazed by the love he continues to show us. Jared

Hanging in there

2011-10-11T16:26:00.000-07:00

Ryan made it through the night but it was not easy on her. She had multiple episodes where she struggled with her breathing. This was due to the asthma. She is doing ok today although she does have moments where she struggles. She is currently on albuterol to help open her lungs up. We will just have to keep watching her closely. Thanks for the prayers, Jared

Tough night ahead

2011-10-10T17:19:00.001-07:00

Michelle and I just had another difficult discussion with our primary doctor. Ryan doesn't look good. She has developed a wheeze and they suspect asthma. This is alot to add on top of everything else she is dealing with. They have asked for both of us to stay at the hospital tonight. This is because we may need to make some tough decisions. Please pray for what we have asked for all along....Healing. God knows our hearts, that as Ryan's parents we obviously want to keep her with us. But if it is his will to take her then please pray for strength for Michelle and I. I will keep you posted on how the night goes. Grace and peace to you all, Jared

What you can pray for

2011-10-08T19:28:00.000-07:00

Just wanted to let everyone know where we are at this point. Here is a short list of our current goals: figure out the possible infection, figure out why she continues to have drainage from her chest tube, and attempt to get her extubated. Thanks again for all the support. Michelle and I are overwhelmed by you all. Jared

Update and thank you

2011-10-06T09:48:00.000-07:00

We continue to wait for results that would confirm a fungal infection but as of right now everything is negative. Ryan had a little fever yesterday morning but it went away pretty quickly. That was the first fever in 5 days. She looks really good and we have been able to lower her vent settings which she is tolerating well. We will continue to take it day by day. I also just wanna take this time to thank all of you for the cards and gifts. Michelle and I continue to be blown away by all of your love and support! Thank you. Jared

MRI today

2011-10-03T20:59:00.000-07:00

Ryan had an MRI today to check and see if the infection had affected her VP shunt and more importantly her brain. I just spoke to Michelle and the scan revealed nothing new. Everything looked normal. The tests being run for the fungal infection(in her lower airway)take time because fungus grows slowly. As of right now nothing has grown so it's still inconclusive as to whether or not Ryan has a fungal infection. But the reality is that the doctors think it's a matter of time until the sample grows and proves that its a fungus. We can only plead to God that it's not but if it is that He will take it away. But if he doesn't we will still praise and honor Him. Thanks for all the prayers and support. Jared

Fungal Infection

2011-10-01T15:03:00.000-07:00

The scope revealed that Ryan has a fungal infection. This is pretty serious. A fungal infection is very hard to treat and the medication that must be used will be hard on Ryan. This extends her stay in the hospital at least another 4 to 6 weeks. They are also concerned about her immune system as well. The fact that she has the fungal infection brings up that concern. Please pray for us. Jared

Rollercoaster Ride Continues

2011-10-01T12:44:00.000-07:00

When I left yesterday to head home, Ryan was doing great. Unfortunately as you all know, her health can change on a dime. Well, last night it did. Her fever is back and she keeps having episodes where she desats into the 20's. What that means is that in those moments she is not getting enough oxygenated blood throughout her body and extremities. I just got to the hospital earlier to meet Michelle at Imaging. That is where they took Ryan to get a CT scan. The scan was of her lungs and airway. She is now in OR getting her airway scoped to check for any possible problems. I will follow up with more info as I receive it. Jared

Latest on Ryan

2011-09-28T08:40:00.000-07:00

Hey everyone. I stayed here at the hospital last night as Michelle went home to sleep for the first time in over 3 weeks. It was really hard for her to leave yesterday. She just can hardly bare being away from Ryan and the dedication she has shown to her is awe inspiring. Ryan is making progress albeit slowly. That's ok though, she can take all the time she needs. Her vent settings continue to get lowered as they hope to extubate by Friday. She does however still have a fever, a fever that she had all last night. Please continue to pray for her healing. I know God has something great right around the corner if we all just trust in His plan and wait patiently for His answer. As I was reading and praying yesterday I was reminded of the fact that God has never let me down. He doesn't necessarily respond when I want him to but God has always been faithful to come through for me. And most of the time it's not exactly what I prayed for but it always seems to work out for the best. I will be honest, alot of times in life I have thought that I knew best for a certain situation and I'm upset when God doesn't answer my prayer. But I tell you everytime I think he has ignored my prayers, he shows up with a plan that I never saw coming. And surprisingly enough it's better than anything I could have thought up. You see God has a plan and He knows what's best for us. So the best thing we can do is make our desires known to Him and trust that though it may not be in our time or even the way we planned it, God will always prove to be faithful. Jared

Working towards extubation

2011-09-26T17:25:00.000-07:00

We have been able to start the process of weening Ryan off of the ventilator. She was making great progress until this morning when she started to struggle with her breathing and the respiratory therapist was forced to increase her rate. The last update that I got from
Michelle was that they think she may be developing pneumonia. She has had a fever the last 3 days that comes and goes. Please pray for us as we face the most difficult time of our lives. It doesnt seem to be getting any better. I will continue to trust in the Lord though lately it has been a challenge. Jared

Post surgery

2011-09-24T11:42:00.001-07:00

Ryan is back from her surgery and doing very well. Thanks for all the prayers. Jared

Procedure for additional chest tube

2011-09-23T19:55:00.000-07:00

Ryan will undergo another procedure tomorrow morning at 8:30am. The plan is to place an additional tube in her chest to drain the fluid that is settling beneath her pectoral muscles. We just ask for more pray. We hope that this will remedy the problem and we can take the next step in getting her home. Jared

Reflections

2011-09-22T20:08:00.000-07:00

Hi there,

Michelle here. :) I read this today and thought I would post it because it really met us where we are at...
"Fear is the wrong use of imagination. It is anticipating the worst, think about what will happen when God shows himself. Dream of the rescue, of what He could do when His hand becomes visible. This is not to set us up for disappointment but to grow our faith by rehearsing miracles in our minds like a child imagining "what if." What if the God who has led us this far really has a plan, and what if that plan is good? Our faith is often weak and forgetful. God does so much for us, and we still nervously wonder if He will continue to help. When oppostion comes, you are ripe for a miracle if you choose to follow God's leading. God is weaving a story of His power in your life. He won't fail you. The Lord is batting a thousand in the category of faithfulness. God's unexpected paths far exceed our shortsighted expectations. When you are trapped at the water's edge, keep walking, because God opens unexpected paths. I have found that there are three stages to every great work of God: first, it is impossible, then it is difficult, then it is done. A path of clearing and guidance will come from an unexpected but miraculous place." -Finding God's Will

Improvement

2011-09-22T14:05:00.000-07:00

Ryan is having a really good day. Her vital signs have remained stable for the last 24 hours and she looks extremely comfortable. One concern we do have is that her chest tube continues to drain. This just means that whatever is leaking around her lung continues to leak. Please pray that it stops leaking and there is no need for further interventions. We should be able to start lowering her vent settings soon. Thanks, Jared

Tube placement

2011-09-20T11:58:00.000-07:00

The fluid around Ryan's left lung was significant enough to require a chest tube to drain it. They are planning on draining the superficial fluid on her chest later today at bedside. We will then just wait and see how her body responds to those two procedures, with the hope that no new fluid will accumulate. Thanks, Jared

CT Scan

2011-09-19T17:46:00.000-07:00

Ryan's ultra sound revealed very little fluid in her lungs. This is obviously a good thing. The problem is that she continues to build up fluid in the tissue around her chest incision. They removed most of the fluid with a syringe but it has reaccumulated. Since they don't fully understand why they have decided to do a CT scan on Ryan at 7:30pm tonight. This will require a peripheral line which has always been close to impossible to get on her. Please pray that God will guide the hands of the IV team and that this scan will provide us with answers. Thanks and God bless, Jared

Chest ultrasound

2011-09-18T09:29:00.000-07:00

Ryan is scheduled for a chest ultrasound at some point today. Her last x ray revealed that she may have some excess fluid around her lungs. We will post more info as we get it. Thanks for all the prayers and support. The generosity that you have all shown continues to blow us away! Jared

Fasting for Ryan

2011-09-15T11:53:00.000-07:00

Join Michelle and I as we fast for Ryan. This will be a 24 hour fast starting tomorrow morning at 7am and ending on Saturday morning at 7am. A spiritual fast involves abstaining from food while focusing on prayer. Fasting demonstrates a profound need for God's help and guidance through complete dependence on Him. The goal is that in your moments of weakness, you turn to God for strength and pray for little Ryan. Michelle came up with this idea this morning while spending time with God. Here is what she read:

Finally, be strong in the Lord and in the strength of his might. Put on the whole armor of God, that you may be able to stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. (Ephesians 6:10-12 ESV)

What Michelle and I are thinking is that we want to put on the FULL armor of God. And one area that we have not put into practice is fasting. So we want to dedicate one day to fasting for Ryan and her complete healing as a way to fully depend on God for all our needs.

Continued progress

2011-09-14T12:00:00.000-07:00

Ryan is having a good day so far. Our biggest concern is that she still has some fluid in her lungs. They continue to keep her on the necessary diuretics to aid in the removal of the excess fluid. If you wanna pray specifically then definitely pray for her lungs. Thanks so much, Jared

Fever

2011-09-13T10:22:00.000-07:00

Ryan had a bit of a fever last night so she is now on an additional antibiotic. We are still waiting for her to get rid of a little more swelling before we can work on weening the vent. Take care, Jared

Fluid release

2011-09-12T11:03:00.000-07:00

Ryan still needs to get rid of some excess fluid around her head and neck before we can attempt to ween her off of the vent. This is priority number one. Michelle and I are doing good right now but we are slowly becoming exhausted. It's tough to not become drained at this point. Please pray for Ryan's swelling and pray for strength and perseverance for Michelle and I. Thanks, Jared

New Video

2011-09-10T17:51:00.001-07:00

I just posted a new video on YouTube of Ryan and Michelle. search key word cliffy2120.

Next Step

2011-09-10T11:26:00.000-07:00

Ryan continues to recover and is doing well. We have been able to ween her down on her vent settings and during rounds today there was talk of attempting extubation as early as tomorrow. Ryan also has a lot of swelling around her head and neck. Some swelling was expected but they are planning an ultrasound for this afternoon to eliminate the possibility of any blockage. Please continue to pray for us all. Thanks, Jared

Ryan is recovering

2011-09-08T23:33:00.000-07:00

Ryan had yet another big day today. She had the line to her VP shunt(in her head) replaced today due to the fact that the previous line may have been contaminated due to Tuesday's emergent surgery. She also had her BT shunt(heart) cleaned out and her chest closed up. Since this was the second time that her chest had been open, a plastic surgeon was called in to assist due to the fact that there was a need to stretch muscle over the sternum for extra cushioning and to clean up the frayed skin before stitching it back together. I tell you these details because this is our reality or should I say...this is Ryan's reality. Ryan has gone through multiple extensive surgeries on a regular basis since she got here just six short weeks ago(today was her 7th). And this little girl has showed me a thing or two about what it means to have strength. How she continues to go down such a difficult path and still have such a willingness to fight blows me away. So as long as she shows us that she wants to fight we will continue to fight right along side her. We truly could not be more proud to be her parents. On another note, Ryan is currently resting easy back in her room with us. She's doing really well and our hope is for a peaceful and restful night. Thanks again for all the prayers. Ryan is a living example that God answers them. Jared

Chest closure tomorrow

2011-09-07T12:47:00.000-07:00

Ryan had a very restful night as she continues to fight. The current plan is to close up her chest tomorrow morning at 7:30am. From there it's back to square one where we will slowly begin to ween her off of the vent. Thanks, Jared

Shunt open

2011-09-06T12:33:00.000-07:00

Ryan had a rough night. They had to do an emergency surgery last night to make an effort to fix her shunt. As soon as they opened up her chest they noticed that Ryan's shunt was open. They don't know if it was the blood thinners or just the opening of the chest that loosened the clot. We just know that she is now getting the blood flow that she needs. The next step will be closing up her chest. She is due for that on Thursday. Thanks to you all for supporting us as we fight for the life of our little girl.

Surgery tomorrow morning/Pray for endurance

2011-09-05T21:44:00.000-07:00

Michelle and I had a very frank conversation with our doctor earlier tonight regarding Ryan's current condition. As of right now Ryan's shunt is not open. The echocardiogram confirmed it earlier today. This means that Ryan is not getting adequate blood flow to her heart. At this time we don't know if the shunt is clotted or if it is faulty. They have put Ryan on blood thinners just in case it's a clot. Simply put guys, Ryan could take a nose dive at anytime. Our doctor was very upfront with us about this fact. She is hopeful for Ryan but she also wanted us to know that she is not confident that she will make it through the night. The plan is to have surgery tomorrow to fix/replace the shunt(if necessary) and to close her sternum which at the moment is still open. If it is a clot that is closing off her shunt then we obviously pray that the blood thinners clear it out. If not then we just pray that God gets her through the night to her surgery tomorrow. Thanks, Jared

Ryan's rough morning

2011-09-05T11:54:00.000-07:00

Ok Ryan now has a good pulse and blood pressure. She is such a FIGHTER! For those of you who don't know, she suddenly coded this morning. We thought for sure we were going to lose her. Apparently one of her lines that is used for giving her fluids had slipped out and was leaking into and around her lungs. As soon as they opened her chest and removed the fluid she began to stabilize. She is however not out of the woods. Please continue to pray for her recovery. More updates to follow.

CPAP to nasal cannula

2011-09-04T12:29:00.000-07:00

Ryan successfully transitioned from CPAP to a nasal cannula. This is yet another positive step in the right direction. Her potassium levels have also dropped and the doctors are less concerned about them. She looks so pleasant right now and Michelle and I couldn't be more excited! Thanks to God for all of your prayers and support. We are so blessed! Jared

Update

2011-09-03T14:43:00.000-07:00

Ryan is still currently on CPAP. They have weened the settings and we hope to have her on high pressure nasal cannula in a few days. Also, we found out yesterday that her potassium levels are elevated. They are still trying to figure out exactly what's causing this. High levels of potassium can cause serious heart arrhythmias so please pray that her levels will continue to come down. Also pray that we can get her off of CPAP asap. Thanks, Jared

Extubation take II

2011-09-01T15:05:00.000-07:00

Ryan was extubated earlier today. She is now on a cpap machine to assist with her breathing. She seems to be doing well at the moment. Please pray that she will continue to tolerate the cpap and that it will only be a stepping stone to get her breathing on her own. I know I say this all the time but thanks for the continual prayer and support. Jared

New video and quick update

2011-08-30T12:02:00.000-07:00

Ryan is doing much better today. She looks a lot less swollen and she has her eyes wide open. Michelle is holding her right now for the first time in almost 2 weeks. Check out the video on YouTube. Enter key word cliffy2120. Jared

Seizure

2011-08-29T11:42:00.000-07:00

Ryan had a seizure earlier this morning. She is stable now but this is obviously a turn for the worse. They had put her on a new diuretic to help release some extra fluid, this caused her sodium levels to drop which brought on the seizure. They are giving her sodium right now. Please continue to pray for her. Our neurosurgeon is on the way over to assess her right now and to check her shunt. Thanks again for all the support. Jared

Surgery was successful

2011-08-27T22:37:00.000-07:00

I'm so sorry guys. I completely forgot to update you all on Ryan's surgery! Well if you haven't heard already her chest was successfully closed yesterday with no issues. She is now recovering as they slowly ween her vent settings. The next step is to get her extubated. At that point we should be able to take her home shortly after. Please continue to pray for Us all. Michelle and I are spending the night in our own bed for the first time in a week. Being able to stay at PCH with Ryan is great but we got very little rest. Thanks for all the support. Jared

Closure surgery take 3

2011-08-26T07:14:00.000-07:00

Ryan is now officially going to have the surgery to close her chest. The surgeon and his team are prepping the room right now. We appreciate all the prayers and support.

Sternum closure tentatively scheduled

2011-08-24T22:27:00.000-07:00

Ryan's surgeon is planning on closing her chest up tomorrow. This procedure is scheduled for sometime in the late morning or early afternoon. Please pray specifically that she tolerates it and that the surgery is complication free. Thanks again for all the prayers and support. Jared

New Video

2011-08-23T23:28:00.000-07:00

Go to YouTube to see a new video of Ryan getting her first bath. I shot this video early last week. Search Cliffy2120. Jared

Surgery

2011-08-23T16:02:00.000-07:00

Unfortunately they were not able to close her sternum after all. The concern is that if there is additional swelling over the next day or two, the closure could compromise her lungs. The current plan is to see how she progresses over night and hopefully it gets closed up tomorrow. Please pray for her as she continues to battle. She is truly a little warrior. Jared

Sternum closure

2011-08-23T12:45:00.001-07:00

Please pray as Ryan is about to have the procedure to close her sternum. Thanks, Jared

Sweet Eyes

2011-08-22T21:37:00.000-07:00

I have realized that getting to see sweet Ryan's eyes tonight is the most beautiful sight I have ever seen. Getting to see her looking back at me moves me to tears....I am overwhelmed by God's mercy and love. Praise god! -michelle

Continued recovery

2011-08-22T19:33:00.000-07:00

Today has been a good recovery day for Ryan. She has maintained good vitals and we are slowly weening her off of the vent. She remains heavily sedated and her sternum is still open. The goal is to rid her of excess fluid over the next 2 days so that the surgeon can close her chest and not worry about swelling. Thanks for all the prayer over the past few days. Honestly we were struggling and very desperate. God just continues to keep this baby here and we are thankful for every second we have her. Much love, Jared

Post Op

2011-08-21T23:09:00.000-07:00

Today was one of the scariest days of mine and Michelle's life. Ryan was very unstable all of last night and neither Michelle or I got much sleep. As soon as I would doze off one of Ryan's monitors would go off. Her heart rate would rapidly drop and then she would convert herself. Her O2 saturations would get down into the 40's with respirations below 20 so they would then start bagging her. This went on for a good chunk of the night. They were able to get her relatively stable prior to surgery but she didn't look good. We waited for her most of the day as her surgery took 6 hours. This procedure normally takes 2. It was very touch and go throughout the entire procedure and we were seriously worried that we were going to lose her. Thank God she came out of surgery ok and that she is still with us. We are by no means out of the woods and the next 8 hours will tell us a lot but all I can say is that we are so happy that she is still here. Let me just brag on Michelle real quick. We were both so exhausted with splitting headaches last night yet my butt layed down and fell asleep while Michelle stayed by Ryan's side all night reading her book after book. What I've learned about Michelle is that she is the toughest person I know. Much tougher than me. I've been so impressed with her throughout this difficult time. She fights so hard for Ryan. I can't imagine a parent being more envolved with their child than she is. I'm so blessed to have her. Please continue to pray for Ryan's recovery. God bless, Jared