Close to Going Home

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

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

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

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

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

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

Tracheostomy went well

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

Special Thanks

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

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

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

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

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

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

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

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

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

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

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

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          

Full heart repair

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

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

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

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

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

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

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

Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Procedure for additional chest tube

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

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

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

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

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

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

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

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

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

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

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

Next Step

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sweet Eyes

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

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

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

Need prayer more than ever

Ryan is scheduled for surgery tomorrow morning at 8am. We are crying out to you all to please pray for our baby. We also got some more bad news today....one of Ryan's ventricles in her heart has some thickening (not associated with her heart defect) that is very concerning to our cardiologist. This is something he has seen in babies like Ryan who have chromosome abnormalities. Most of these cases have not had good outcomes. Please pray for us and Ryan. This is too much to handle right now. To see Michelle so broken is almost unbearable. Pray that the shunt will remedy Ryan's complications. Jared

Ryan's struggling

As I type right now it's with deep sadness in my heart. Ryan took a turn for the worse today. She stopped breathing and the medical staff here at PCH was forced to intubate her. We are not quite sure the cause. They just took her back for a CT scan to check her neurological functioning. It also could be an infection or just the fact that she needs surgery for her heart asap. Please pray for her and us. Pray that we get answers soon. We are broken and can't take much more. I feel like I'm in a horrible nightmare. Pray that our faith remains strong. With love, Jared

Transfer to PCH

We will be moving forward with the plan to place the AV shunt. At this point, the continual narrowing of Ryan's pulmonary valve has forced this decision. This will allow her to get the adequate amount of oxygenated blood flow that she needs. The plan right now is for us to make the transfer over to Phoenix Children's tomorrow and have surgery on Monday. I think its obvious what we need prayer for. Please pray that Ryan's surgery is a success and that she will have no complications. Thanks again for the support. Jared

Shunt

Ryan had an echocardiogram yesterday that revealed significant narrowing of her pulmonary valve. They have put her on a medication to counteract it but they think they may need to place a shunt to make sure Ryan gets the proper oxygenated blood flow to her lungs. We thought we were going to avoid this and get to take her home for a few months before the full repair of her heart. Instead this would mean that she would go from St. Joes straight over to PCH for the procedure. She would then come home for up to 9 months then go back to PCH for the full repair. Our hope right now is that the medication she is on works and we can avoid this surgery. Thanks for the continued prayer and support. Jared

Non nutritive feeding

Ryan continues to improve everyday. She is currently on a nasal cannula to provide her the additional O2 that she needs. We hope to have her weened off of the O2 before we take her home. Also, Michelle will begin attempting to feed her for the first time today. This will be yet another test for Ryan. We will be able to see how well Ryan can latch and also maintain her breathing while sucking and swallowing. Please continue to keep us in your prayers. Jared

Tube removal

As you all know, Ryan had her intubation tube removed yesterday. And although she continues to do better than expected, there were a lot of concerns that we had with the removal of the tube. For one, it's very common for chromosome babies to have floppy trachea's. This could have forced the doctors to perform a tracheotomy and Ryan may have required the use of a ventilator for the rest of her life. So you can imagine what a special moment it was to see her take her first unassisted breath and how amazing it was to hear her cry for the first time. We had hoped for that moment since the day she was born, and Michelle and I were both overjoyed as if she had just arrived. She is such an incredible little girl and Michelle and I feel so blessed that she is ours. Thanks to all of you for the continued prayer. We could not make it through this tough time without the love and support of our family and friends. Please continue to pray for her speedy recovery. Ryan is currently on regular feedings through an OG tube and we hope to be bottle feeding her very soon. With love, Jared and Michelle

New Video

I just posted a new video on YouTube. Ryan just had her intubation tube removed. Search cliffy2120. Jared

Sin is severed

Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin, so as to live for the rest of the time in the flesh no longer for human passions but for the will of God. (1 Peter 4:1, 2 ESV)

Notes from ESV: Peter's point is that when believers are willing to suffer, the nerve center of sin is severed in their lives. Michelle and I can both attest to this! Although believers will never be totally free from sin in this life, when believers endure suffering for the sake of Christ they show that their purpose in life is not to live for their pleasures but according to the will of God and for his glory.

Doing Well

Haven't posted anything in a few days and in this circumstance, no news is good news. Ryan is recovering from her spinal closure surgery like a champ. Our doctor hopes to have her weened off of the ventilator in a week. We hope to take her home in 2 to 3 weeks. Please pray that Ryan continues to heal and that there are no more setbacks. Thanks, Jared

Follow up surgery

Ryan's 2nd surgery on her spine went very well. She is back in the NICU recovering. Thanks for all the support. Jared

Surgery tomorrow

As I told you all in my last post, Ryan is still leaking CSF from the closure on her back. Due to the risk of infection the doctor's have decided to bring in a plastic surgeon to create a skin flap from Ryan's own skin to cover the closure and make it more secure. This was tough for us to hear. We were really hoping that she could get more of a break from the previous surgeries. But at the same time we know God has a plan for her and we will continue to trust in Him. The prayer request is this: 1st pray that when they change her dressing tomorrow that there is no leakage. 2nd if there is still leakage, that her surgery will be a complete success and that she will have a rapid recovery. The hardest part about this is how well she has been doing. They continue to lower her vent settings daily and her feeding is going great. We just don't wanna see her take any steps back. Thanks so much for the prayers. Jared

Foley Catheter removed

Today was another good day. Ryan is now officially cleared of any infection. She should be off of the antibiotics within a few days. She also had her foley catheter removed. They waited 4 hours after the removal before using a straight catheter on her. The goal was for her to have less than 15cc's of residual urine in her bladder and she had less than 5. This is a huge step for her. We now know that she will not need an indwelling catheter and our hope is that in time we will learn that she has no need for catheterization at all. Ryan is still leaking a little fluid from the closure on her lower spine. Please continue to pray that it heals up quickly. I can't say enough how thankful we are to all of you. We are so blessed. Jared

Update

The second round of test results for Ryan's spinal tap came back negative! At this point she has a 97% chance of being clear of meningitis. They will however test her one more time tomorrow to be sure, if she is clear then they can take her off of the antibiotics that she is currently on. The closure on her back is leaking less and less everyday. The shunt is doing it's job. Please continue to pray that her back will heal and that we can avoid any possibility of an infection. Tomorrow they will remove her foley catheter and begin straight cathing her every 4 hours. This will be a big test for little Ry Ry. The objective of the straight cath is to determine whether or not she is able to empty all of her bladder. Our hope is that she can and that she won't need the use of catheter's. Overall Ryan is doing unbelievably well. She opens her eyes, moves her arms and legs, and her vital signs improve everyday. Thanks again for keeping us in your prayers. Jared

New video

I published a new video of Ryan. Check it out on YouTube. Enter "cliffy2120" in the search box. Ryan continues to do very well. Jared

Great News!

Ryan's preliminary tests results from her spinal tap came back negative! We are not out of the woods but this is very encouraging news. She was also negative for infections in her blood and urinary tract. Thanks so much for the prayers! It's so incredible to see God work through so many people. We are in awe of Him. Jared

Update

Hey just got a call from our nurse. Ryan is doing great this morn! Moving all her extremities and her eyes are wide open! We are scrambling to get to St. Joes. Still waiting on results from spinal tap. Thanks again for all the prayers!

Pray, pray, pray

Ryan is struggling. She has an infection. At this time they have drawn blood and cerebral spinal fluid to determine the source of it. They think that they caught it in time but you can never be too sure. She has a tough road ahead of her and Michelle and I are broken for her. Please continue to lift her up in prayer. Jared

His yoke is easy

This is what Michelle and I read this morning as we spent time with God together. We sure needed to hear this. It's been tough the last few days. We are worn out, but God is good and we will get through this. Ryan's recovery has slowed up a bit. She is stable but still on morphine on a regular basis. She is also breaking out in a rash. Her vent settings are still pretty high and the closure on her back is healing at a slow rate. Please continue to keep her and us in your prayers. Jared


Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." (Matthew 11:28-30 ESV)

More videos

If any of you would like to see more videos of Ryan then go to YouTube and enter keyword "cliffy2120". Thanks, Jared

Video of Ryan

If you guys are interested in watching a video of Ryan then just go to YouTube and search "actresshaley". This video shows Ryan moving for the first time. She loves her mommy!

Ryan's recovery

Last night was rough for Ryan. On top of the pain meds that were in her system from surgery, they had to also hang a morphine drip. She was very uncomfortable last night and we can only assume that she's in pain. Also, her spine closure is not healing properly. They are bringing in a wound specialist this morning to take a look at it. Please continue to pray for all of us. Obviously you all see what Ryan needs prayer for, but this is really challenging for Michelle and I. She just had major surgery 6 days ago and has been on her feet much more often than she should be. There's very few things that she can do right now without my assistance. Please pray that I can have patience through all this. That I will love Michelle well. As much as I love Ryan, Michelle will always be number one. I'm not gonna lie, at times this all becomes too much but there is no way we could get through this without the support you have all provided. Thanks, Jared

Precious moments

Today is my birthday and it was easily the best ever. I got to see my daughters eyes open for the first time! It was such a feeling of illation to see this after all she has been through. Also Michelle got to hold her today for the first time. What a proud moment it was to see my 2 babies finally together. I'm so bleased! Jared

Shunt placement a success!

This has been one really looonnng day but Ryan just came out of her surgery and she is doing great! We really didn't have any doubts. God has really given us a since of peace and he has calmed our spirits. She will now have a few weeks here at St. Joes to recover. Her strength continues to amaze us every day! Thanks again for the prayers and support. We are humbled by the number of you that have taken a vested interest in our sweet angel. God bless, Jared

Shunt placement today

Please pray for Ryan's procedure today, she will be getting a shunt placed in her head. This is necessary to remove the excess fluid that is causing swelling to the ventricles in her brain. We are confident that Ryan will do well but we are asking you to please pray that her vitals remain stable for the entirety of the procedure. Thanks again for all the support. Jared

Great News!

Things are going really well here at St Joes! We just got some really good news. In fact it's an answered prayer. The CT scan revealed that Ryan's pulmonary artery is doing work! The nurses have taken her off of the prostaglandin which will allow her PDA to close. This is great news because we can now wait for up to 3 months to have her heart surgery. This means that we can take her home in as early as 2-3 weeks! This will allow her to grow and thrive at home with us instead of in the hospital. Thanks so much to all of you who are praying! Ryan is a testimony of your faith in our Lord. To the one and only God be the glory. Jared

CT Scan follow up

Ryan has returned from her CT scan and is doing well. We are now just awaiting the results. I will keep you all posted. Jared

CT scan

Ryan is doing good today. Her vitals are stable and she is getting some much needed rest. She has a CT scan scheduled for tomorrow at 8:00am to take a closer look at her heart. When speaking with the cardiologist today, he told me that he has a gut feeling that Ryan's pulmonary artery is capable of sustaining her. This would be an answered prayer. We could then take her off of the prostaglandin, which would allow her PDA to close and give us a real chance to take her home in a few weeks. She would still need surgery to fix her heart but it could then be delayed for up to 3 months. Please pray that the Doctor is right. We want nothing more than to bring her home. Thanks so much for all of the prayers and support. May God bless you all, Jared

Prayer request

As you all know Ryan's surgery to close her spine was a success. Our next concern is the cerebral spinal fluid that has built up in her brain. If her body is unable to somehow absorb the extra fluid she will have a shunt placed in her head to drain it. This is yet another invasive surgery for a little girl who just arrived into this world 2 days ago. Please pray that the fluid in her brain will subside. We are taking this one step at a time and right now the excess fluid is our focus. Thanks again to you all. Jared

Count it all joy

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. (James 1:2-4 ESV)

New info

Well the good news is that Ryan made it through surgery and is doing well. What A relief it was to see her when she returned. I do however have some news that's difficult to hear. We found out earlier today that she is missing her corpus callosum in her brain. It separates the cerebrum into 2 hemispheres. They are unsure how this will affect Ryan. Apparently there are perfectly healthy people walking around without one but also people who are severly affected by it's absence. All we can ask for is continual prayer. We are trying to be strong but we are truly broken. Love to you all, Jared

What a day

It's been pretty crazy here at the hospital. Though Ryan is here, it wasn't easy. When she was pulled out of Michelle's womb, she was cyonotic and limp. It's pretty difficult to see your baby arrive and immediately need resuscitation and intabation efforts for her to be able to breath. By the grace of God I was able to remain strong and stay calm. The last thing I need was for Michelle to see me distressed. Once the tube was placed she was then rushed to the nicu where she began to breath on her own. What a relief that was. Her vitals stabalized and Michelle and I were able to take a deep breath and relax. She remained stable for the rest of the night. Please continue to pray for Ryan. She is in surgery to close her neuro tube defect as I type this entry. We love you all and may God's will be done. Jared

She's Arrived

She's here and she's beautiful! She came in at 5lbs and 6oz. She is doing good. More updates to come.

We've Arrived!

We just arrived at St. Joe's! Michelle is getting an IV put in her arm at this very moment! Please continue to pray for us and I will keep you all posted. Jared

Directions to St. Joseph's hospital

For anyone who is planning on stopping by to see us on Thursday here are the directions: To St. Joe's hospital take I-10 East to 7th Ave, head north over the bridge and continue on until you get to Thomas Rd then take a right onto Thomas Rd. Once on Thomas Rd you will then take a left onto 5th Ave, this will take you into the hospital. Then follow the signe to the parking garage. Take the elevator in the parking garage down to bottom level then walk in the direction of the valet stand. You will then continue past the valet stand, around the circle drive and enter the hospital through the chapel doors. Walk through the sliding glass doors and go left towards the elevators. Get on the elevator and head up to the 5th floor. Go left to the check in desk at the OB/Traige unit. There you should be able to find us.
Also, Michelle's c-section is at 10am, but you might not be able to see her until 12:30 but Jared will be around to tell everyone how things are going. Also, there is a chance that Ryan will not get to have any visitors for the first 2 days...but that is just a possibility because we are hopeful that Ryan will come out a healthy little lady.
Thanks again for all your support and prayers! We are just days away from meeting little miss ryan!!!

Food Tidings

Hi there all,

The due date is fast approaching! We are so excited to finally meet miss ryan. We wanted to let you know that we have had some friends start a food tidings site for us for the first couple weeks after the c-section. If you are interested in signing up here is the web address:
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=138352ef-98bc-4aa0-a577-e3210184d0de
Thank you all for you prayers as we narrow in on the big day and as always we are so thankful for each and every one of you.
Love Jared and Michelle

Its Official

Ok its official, barring any unforeseen circumstances, Ryan Lynn Clifford will enter this world July 28th 2011 via C-section. I have a strong feeling that God is going to do miraculous things with and through this little girl. She has already changed my life. I have loved the Lord for quite sometime but since learning about the difficuties that my sweet angel is facing, my desire to know, love, obey, acknowledge, and please God has increased exponentially. Some things that used to seem so important to me now appear to be so meaningless. I used to be insecure about my ability to share my faith, over the last few months I have shared the good news of Christ on a regular basis. Now I'm sharing without fear, not worrying about my deficiences but resting completely in the Holy Spirit to speak through me. I've seen people who would not give God a second thought who are now willing to read books about Jesus. This is the power we have when we give Christ complete control of our lives and Ryan has helped remind me of this truth. I'm certain that no matter the outcome, Ryan will continue to bless my life as well as those around her. Thanks again for the many prayers. Michelle and I feel so blessed by you all. With love, Jared

C Section dates

Just to let everyone know, we have two possible dates for the c section. Its either going to be July 18th or the 28th. I will keep you all posted. Thanks again for all the prayers. Jared

Very Encouraged

Hello again,
We had our last big ultrasound yesterday with our perinatal doc and it went well. We will now be with a high risk OB/Gyn from here on out. Ryan is still building up fluid in her brain due to the spinal defect but the encouraging thing is that she is still kicking, punching, and moving all over the place! She is so strong! It was so neat because when we viewed her with the 3D ultrasound she smiled. We see it as a piece of hope sent from God. With everything this baby is going through, to see her smile was priceless. We already love her so much and can barely wait to see her for the first time. Please continue to pray for us. Pray that we will continue to be hopeful and to always have faith in what God can do. We don't want to ever lose hope for this precious little girl. Thanks again to you all. We love you, Jared

The Latest News

Thanks to eveyone who has commented on this blog. Your encouraging words mean more to us than you know. We are coming up on week 34 of this pregnancy tomorrow! Man has it flown by. We had our first appointment with our new OB/GYN (high risk) on Monday. Though he is a little bit of an ass, he seems to be really good at what he does. We had another ultrasound that revealed no new info. Ryan is still about 2 weeks behind when it comes to growth but her vitals are stable and she contines to kick Michelle on a regular basis. We also had a chance to look at her heart again yesterday. This also revealed nothing new. We know what were dealing with but as of late and as we get closer to delivering, my faith is not as strong. Please pray for me. I have 2 girls to worry about here. Pray for Michelle. She has had to undergo so much testing and she is becoming exhausted. She has had to receive 2 steroid shots over the last couple days which made her feel nauseated and flushed as she continues to work in this brutal arizona heat. It was 115 yesterday. Thanks again for all the prayers. Without your support this road we have been traveling would have been all the more difficult. Love you all, Jared

Appt for Ryan

Hello everyone. Just wanted to give you an update on an appointment we had today at St Josephs hospital in which we discussed Ryan's birth plan. The two nurses that we met with couldn't have been more caring and compassionate towards our situation. They were able to answer all of our questions and meet all of our needs. I just want you all to know that Ryan is in great hands! We will have a top notch team of physicians working with her. Thanks again for all the prayers. We love you all, Jared

Thanks!

I just want to kick this blog off by saying thanks to all of you who are praying for Michelle, Ryan, and I. We can feel the presence of the Holy Spirit in our lives more than ever.
For those that do not officially know the status of our little baby girl, Ryan, here is a synopsis.
Around week 18/20 we found out that Ryan has Spina Bifida as well as a heart defect (tetralogy of fallot - basically a hole in her heart) at our first big ultrasound.  We thought we were going to find out the sex of our baby and instead found out some pretty scary news. Of course we were initially broken hearted and shocked and needed some time for this all to settle in. We then went onto a whirlwind of testing and appointments. The doctors asked to do an amnio to look at Ryan's chromosomes and ultimately found that Ryan has rare chromosome abnormality. She has a duplication on her chromosome 2. What this means is somewhat unknown. There have been 25 documented cases of babies with this disorder and their symptoms varied from one extreme to another. Basically, if you can name it, it can go wrong. But the good news is that no two babies were alike and none of them have exactly what Ryan has. Heart abnormalities and Spina Bifida are more common symptoms, but past that it is like drawing a symptom out of a hat. There is no documented mortality rate, however mortality is always something to be concerned about when dealing with a baby with a chromosome abnormality.
Though the doctors have informed us of the worst case scenarios of what we are facing, we have chosen to have a faith and hope. The kind of faith and hope that does not doubt the power we have in Jesus Christ. We are praying for a miracle and we are asking for you all to do the same. We are finding rest and peace in God and trusting that he has His hand on this circumstance and will be with us every step of the way and at the end of the road something beautiful will arise.
On another note, we had an appointment yesterday to check Ryan's rate of growth. She is growing at a slower rate than normal but growing none the less. Her heart rate was great and she was moving and kicking all over the place. I think she's gonna be a soccer player.
Michelle is also doing really well. She is so positive and courageous. I'm so lucky to have her. I will leave you all with a a few verses from Matthew that Michelle and I are trying to memorize. We were looking for a passage to rally around to help us through this tough time and this is the one we chose.

"In the morning as He was returning to the city, he became hungry. And seeing a fig tree on the wayside, he went to it and found nothing on it but leaves. And he said to it, "May no fruit ever come from you again!" And the fig tree withered at once. When the disciples saw it, they marveled, saying, "How did the fig tree wither at once? And Jesus answered them, Truly, I say to you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, be taken up and thrown into the sea, it will happen. And whatever you ask in prayer you will receive, if you have faith." - Matt 21:18-22

Moving a mountain was a common metaphor in Jewish culture for doing the seemingly impossible. Though we have prepared ourselves for the worst, we have decided to not limit Christ in any way. Our faith and hope rests solely in Him. God bless, Jared