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