(baby) Rykin

[daily4Him]

Rykin is 5 1/2 months old. Tests showed before birth that he had serious heart problems. The specialists didn't think he would live at all. Since birth, he's had three heart surgeries. He's gone into cardiac arrest, and seven weeks ago he ended up staying in the hospital for six weeks. He spent the first two months of his life in the hospital. The specialists still say that there is little time left for him.

He is absolutely beautiful; thick strawberry blond hair that sticks straight up, deep blue eyes. Weighs ten and a half pounds. His mommy Jayne took him to his weekly cardioligist/pediatrition check up today and the Dr's are pleasantly surprized that he's gaining weight. He is hooked to a feeding tube that stays attached, but last week finally had the cath taken out. He's a bit behind regarding what infants his age do, because he's been in isolation so long, absolutely no touching skin to his body.

He has a sister, Faith whom is the same age as my grandaughter Jessie. Jessie is visiting here for a few weeks, so Faith is here a lot. Faith knows that her brother's health issues means that he won't be here long, but their parents are absolute rocks in their faith, and their daughter proves it when sharing that every minute he is here is a gift.

Jayne is busy, feeding Rykin through a tube is a long process where extra care is needed. One day a week he goes to the cardioligist/pediatrician; one day a week for an echo reading; one day a week for specific theraphy. Jayne and her husband Marshal need extra prayer, because on the same hand, they must prepare. Everyone agrees that the best place for Rykin to be if at all possible is home.

Every day with him here is a blessing; when I'm home, I volunteer to have Faith come over...only the patients and caregivers are allowed to be with them during tests and such. They live on the same street as me.

Thank you, Jesus for allowing us the priveledge to love even when we know the measurement of pain, for we also know the truth of Your promises.

Please pray also that I can be the friend that I need to be.

[DrRita]

Hi, I moved this to prayer requests for you.

[ahinz90]

I will be praying daily for Rykin, as well as the rest of your family.

[daily4Him]

Thank you.

I spent a little time this evening over at their house. It is rare for Rykin to be awake and love to be cuddled, they think it's because he hasn't been able to bond in this way.

Because he's gained a little weight, the Dr's have changed his feeding schedule; every three hours he's hooked up to the portable machine that connects his formula to his feeding tube for an hour. But the medical thumbs up is that he gets to be hooked up to this for the WHOLE NIGHT. It is critical that he put more weight on before his next surgery. They were earlier given the ok to try giving him formula by mouth, but he absolutely hates the stuff, also, since he's never taken anything by mouth (but does use a pacifier) he's missing the essentials in sucking/swallowing. The Dr gave the ok to try specific frozen fruit juices following a strick schedule keeping all germs at bay, and although he is confused on the swallowing, he does like for a short time (sort of) licking it. It is a joy to see him on this adventure. He seems to really like the cold texture and taste. At least he got a few drops of nutrients this way; all a good thing.

I don't think I'll ever think of frozen fruit pops the same way without considering the impact of a single drop in such simple things I often take for granted.

Rykin was very cuddley tonight. He wanted to sleep facing me, on my shoulder, resting in the crook of my shoulder and neck. So light, my arm braced between the back of his knees, he'd curl up, his tiny diapered backside sticking out, elbows close to his sides, fists like unopened buds under his chin, I listened to his cadenced breath and caress my cheek very softly over his. This was a pleasure, not a chore, giving Jayne a break.

[daily4Him]

Jayne took Rykin to the hosptal for an echo; they'ran' into the Dr they see on Thursday whom causually asked permission to see Rykin now instead of waiting another day. Saved jayne another deductable.

Today the Dr's discovered that one his stints is colapsing. They need to fix that as soon as possible.

Pray also that the insurance is used best for Rykin Right now they're paying 25 dollars for each Dr related visit, and with at least three visits a week, that adds ups quickly.

[lynnmosher]

Oh, so sad. I don't think you need to pray to be a friend to them; I think you already are! In my circle, we have a little boy who is suffering severe health issues also. It breaks my heart to see little ones in pain and suffering. I will certainly pray.

[Laina]

I'm so sorry to hear about little Rykin. I'll be praying.

[jacks girl]

Praying for the babe here too.

Jacks

[JayBee]

praying here for the little one and you all. as Lynne says you are a good friend already and if and when the time comes i reckon you'll be there for the family. The Lord give you Peace (have you noticed the peace coming from baby Rykin)

[daily4Him]

YES!!!!

I never really thought about that until now. When I'm not holding him or touching him, it is easy to focus on all sort of hard stuff.

Wonder if God thinks the same as this? Whenever I choose not to fold myself into everything that is of Him, to feel the warmth and reality of His presence, to feel the assurance of the solidness of His Love...

Thank you!

[daily4Him]

Late yesterday Jayne received grim news: all of Rykin's artories are blocked, and nearly all of his stents have blocks.

He needs a new heart, but they won't put him on the list because of his other health issues, his kidneys are low, nearly in his pelvic area and are fused together, lessening a healthy recovery if a heart is available. If he had few or no other health issues (including his low weight) he'd be on that list, but there are so few donations that although we all know that heart donations should go to a child whom has a chance to recover, this is so sad.

He is scheduled for surgery July 21, and the only thing they will do is fix the stents.

He's already gone into cardiac arrest once during surgery...

Faith, Mom, Dad and Grandma whom lives with them are all going to family counseling both together and separately to help through this.

[lynnmosher]

Oh, I am so sorry to hear this. Still praying for him and the family.

[Laina]

I'm so sorry too.

I pray that you all have added strength to endure, courage to continue in faith and the comfort that comes from a loving God. May this precious little one be a miracle in all of your lives!

[daily4Him]

Thank you for your prayers!

I spent six hours on the road last week taking a homesick granddaughter home. Sheks the same age as Faith and kept changing her mind all while we traveled. Since her big sister was paticipating in the Fair with the FFA kids, we wanted to support her. (This ties in w/the original prayer request thread)

We went to the fair with family and friends they've made through work. Later, when us adults needed a break, we crashed on some soft grass away from the huge crowds while the kids played. My original prayer request had been forwarded by family to friends, and they knew about Rykin. Asked me questions, then handed me a card to give them. In the card, there was a request asking if they'd feel comfortable in sharing Rykin's medical history along with a photograph of Rykinb, maybe even of the family.

Turns out that the company they work with is known for large contibutios of financial aide/support for infants in this type of situations.

Although I don,t know where this is going, or if this will physically help Rykin, they shared that once the paperwork is in, Rykin has already been accpted as a recipient of this gift.

I was in tears...

[Timber Wolf]

Sorry to be late in responding. I have 7 nieces and nephews that are my "kids." I was here visiting from college when the 4th was born. She had prblms and stayed in the hospital for a few days. I Know how I felt during tha time, and reading this thread rips out my heart.

I pray for God's blessings on this little one, and on his family. May God Heal, Comfort and provide you all with the peace that passes all understanding.

TW

[lynnmosher]

Daily, That sounds great! How wonderful this company does this.

[JayBee]

Praise God He is good. Peace

[daily4Him]

Thankyouthankyouthankyou for prayers! I made it home in record time, no problems, the traffic was a little slow going through LA< but the weather was nice, so like everyone else I rolled the windows down. Turned up the Apologetix music and made sure that I was driving at the same speed when other drivers were on the side of my car.

Couldn't wait to get home and talk to Jayne. Grandma was standing outside, and flagged me down. Unpacking could wait; she said that Rykin was on a new med which is helping to strengthen 'something' (can't remember what) related to the arteries. When I started to share the news, she dragged me in the house to talk with Jayne. Dumbfounded, she showed me the stacks of bills that they are still facing. She insists that this is secondary, but still worrisome for a very long portion of their lives. She says that she'll have what is needed by tonight.

They are trying not to worry about the surgery, but since it is next week, all admit that unless they are physically busy, they emotionally fall apart. Specific prayes aside from the norm is that where Rykin will be recovering, that a system will be in place where they can 'hear' him if he is gagging. Since he cannot physically have anything come up through his esophagus and what naturally goes in that direction must be removed only through unplugging the feeding tube. Sometimes this 'alert' is so quiet, it is hard to hear him when close by. I'm sure that there is something that can be used, but as of now, Jayne is focusing on this until she feels he is safe.

I'm not giving up hope that somehow a heart will be available. Don't voice this outloud, but I'm like a child, constantly bending God's ear on this request.

[daily4Him]

I'm sorry it's taken so long to get back, but here's the latest (pausing to praise God);

-Last Friday the family got discouraging news that Rykin hadn't gained enough weight and the Dr's were concerned. They were thinking about postponing part of the surgery to not over-tax and lead to complications. However, when Rykin went in to prep late last night for this mornings early surgery (5:30 AM), the staff was puzzled and surprized and frankly didn't trust the results of what they were seeing. Seems that somehow Rykin's gained A POUND and it is distributed over his body as though it took a month to do so. His heart is actually stronger, (the Dr's don't know why), something they have NEVER heard of before. Nothing on record to compare. When he went into surgery, they were finished by 4 instead of 5:30 pm. They were able to rewire everything from one side of the heart to the other, do some reconstructive work that they were going to wait until the next surgery to do.

The next 48 hours are very critical; the doctors choose to keep the chest area 'open' just in case of an emergency for at least the next 48 hours.

Unfortunately, only the parents are allowed in to see him, due to infections and to free up staff; the parents are only allowed to stay in (one at a time) 5 minutes per hour. No one prepped Mom or Dad for what they were going to see though; she said that when she went in, all he had on was a thin gauze across his chest and they had shaved his head straight down the middle, so that with his red hair, she said it looked like the red sea parting, and a monitor was attached to his head. After not sleeping for 24 hours, when she saw his chest, she didn't know that they were going to leave him 'open'. Not prepared, both she and her husband fell apart before they could gain composure.

Ever listen to Paul Harvey? "Here's the rest of the story...." Not quite a year ago, when my oldest son and his family moved here from Texas, the house across the street became available for rent. We all got excited, thinking that God planned it that way for a reason, then were seriously disappointed when all the leads for jobs busted out. Instead, he was offered a better job nearly six hours north. We all complained, lifted, put on happy faces, prayed them up, and off they went.

When Rykin's family moved into the house, I became friends with them, and they with the neighborhood. When I started sending prayer requests regarding Rykin's heath issues out, my son in turn sent them out to friends. This prayer request made it to the corporate office. They in turn contacted my son whom contacted me, then I Rykin's family.

Their insurance pays well, BUT their portion was still 500 dollars every time they stepped into the hospital. On the average of three times a week, as of mid week last week, that was a little over 200,000 dollars they owe. With the new cardiologist, the insurance won't pay anything. Complicated, but they chose a different hospital which is geared better for their son. Estimates, excluding the possible month long stay that follows expects to double what they already owe.

Now, after today's surgery, the cardiologist is actually talking positively. Says that if there are no complications, that they can actually plan on addressing the other problems one step at a time. THIS MEANS THAT THERE IS A VERY GOOD CHANCE THAT IF HE NEEDS A NEW HEART, HE MAY QUALIFY!!!!

and.....my son was told through his corporate office that they donate to give back to the families communities to help young children with serious heath issues. THEY ARE FOOTING THE BILLS!!! All of them!!!

I share this not just as a praise report, but as a REMINDER that we can't see the whole picture of what God has planned. I complained and whined like a five year old when my son's family wasn't going to move in. All I saw was that my two granddaughters would once again be far away. That there were serious honest reasons why 'I' thought they should stay here.

I was mad at God, let him know it, then waited my way into spiriual maturity. It was inconvenient to drive, the price of gas is rotten, blah, blah, blah...took me a while to knock it off and start thanking Him, but honestly, my trust just stank in this.

Back on track and waiting for the train...

[daily4Him]

Rykin is intentionally sedated (out). The cardiologist say that they want him to wake slowly, and that if he isn't reacting 'happy' they'll put him back under. They took him off oxygen, took all the packing out and say that he is doing 'great'. There is a very good chance that they'll close him up tomorrow.

Thank you for your prayer support!!!

[JayBee]

Our God is Ginourmous.....He breathed stars into existence yet with the same breath breathed life into Adam........baby Rykin is sooooo tiny yet Almighty God cares about him......what a miracle....I pray (and i know we all do) that as God continues what He has begun in Rykin those around will indeed continue be amazed....there's always more with our God.

[daily4Him]

Another update:

When I took food over, grandma was on the phone with mommy. She said that when she went in to see Rykin, nearly ALL of his swelling had completely gone! The dr's are very pleased ans surprised at how fast he is healing. The family has been told that they will probably close him up tomorrow! Yahoo, and praise God!

Keep the prayers coming, they're like beautiful squares sewn together for this little guy...each prayer important, each valued and needed. Thank you.

[daily4Him]

It is official: Rykin's chest is closed up. He was awakened for a very short period of time, and brought 'back under' because his stress level was way to high. They've removed many of the exterior stuff, however, his left leg and foot are very swollen and purple blue. They can't move any of the IVs over to the right side because he experienced a blood clot on his right side during the surgery before this one. Even his left foot is so swollen that it looks painful. However, in every other area of his body, the swelling still continues to go down.

Mom and Dad are exhausted. They've already completely blown what money is set aside for gas, what with going back and forth to the hospital.

[daily4Him]

An update:

Rykin was moved from Children's Hospital to the closest hospital, Kaiser. Jade was very uncomfortable with this because she has formed a trusted bond with the nurses and all medical folk at Children's. Rykin has been taken off of everything but one IV which they put on top of his head (all his other veins are in danger of colapsing). He's been put back on to oxygen off and on, and is still being slowly weaned to a feeding tube as before. He's awake a lot, and Jade says that he's facinated by one of the nurses with blond hair. His eyes light up and follow her all over the place.

Jade is naturally concerned that the nurses won't know all the signals Rykin has to red-flag potencial problems. But all in all, this I think is a good step; he's doing better.

Thank you for your prayers!

[lynnmosher]

A little ray of sunshine. Will continue to pray.

[SkeeterFranklin]

I came upon this prayer thread late. I'm so sorry. I will be praying.

[Laina]

Great to hear the follow up. Thanks for letting us know. Will continue to pray!

[Thebigguy]

Father I rebuke a spirit of death in Jesus name and I speak devine destiny, your plan and purpose over this boy in Jesus name.

[daily4Him]

Thank you for your prayers, an update and plea though!!!!

Rykin's arteries are for an unknown reason blocked. I Haven't heard yet for sure what they are going to do, but he's at Children's again, hooked up to oxygen. All the options point to surgery again, maybe as early as tonight, but I think that if at all possible, they will wait as long as they can so that he can build up more strength. His Mommy was telling me that he was doing so well that he was spending more time off oxygen than on; she was working with the Dr's to finalize plans at getting him home. Very disappointing for the family, they were so hoping to have him home by now. However, if they HAD brought him home, they may not have had any warning at all about his blocked arteries and the chance of something serious happening because the chances of a blood clot were enormous. They believe that God took this into control from the get go. They are so danged tired, both emotionally and physically. Pray that any medical/surgical actions work in conjunction with God to bring Rykin to better health and to give this family time to relax, bond together as other families.

Please lift Rykin's sister, Faith Shiloh in prayer. She starts school Monday, in the 3'd grade, and she really wants to stay home.

[JayBee]

heart aching and praying

[SkeeterFranklin]

Baby, family and you can count on my prayers.

[daily4Him]

It's a strange thing, for me to claim to trust God, yet find myself scared, worried; here's the latest: The specialists say there is nothing they can now do for Rykin's arteries; there is a small chance (I'm holding to the TRUTH of a size of a mustard seed here!) that SOMETHING may correct its self. However, out of the blue, Rykin's lungs are now collapsing. Frustrating, since with all that he's had to deal with, his lungs have never, ever been a problem. The Dr's THINK this might be because he's spending most of his time flat on his back; generally, there is less complications overall, he's less apt to pull anything out, gives his chest area in particular a better space to heal. What is worrisome is that they are considering letting him go home ASAP so, in their words, he can have the comfort, mostly being held, therefore giving his lungs room to expand.

Frankly, I don't think this is the whole truth. They could do the same from the hospital. Most of the time he can't now be held because of the various important items attached to him, and this 'feels' more like they are sending him home for the last time, not unlike Hospice doing it's very wonderful work in Grace.

His Mom and Dad and even his sister are hoping for this time at home, they think that it will lend time for his lungs to heal.

I don't know. I'm very concerned, confessing to being scared. How does one relinquish the heart behind the words: Thy Will Be Done, and really, really believe this while hanging on to ideals of miracles according to self, not God?

All I know is what I see when I look in this family's eyes, what I feel when I touch this child, and what has happened in his short life. Why is it so HARD to let go and say the words, THY WILL BE DONE and feel at peace when each minute, while realizing it is a Gift, can't help but claim this as a step forward in hope?

I just don't know what else to do other than be there for this family, and pray. I just WANT to do more, if that makes any sense.

I'm sorry for dumping, but I just want to be honest.

[JayBee]

it is indeed a strange thing.....even stranger when fear grips us (a thing common to us all even knowing what we know) but we can either live the day with fear of what might be or sing praises to the one who performs the impossible every single moment of that day. Perfect Love casts out fear. one thing is for sure baby Rykin is in Perfect Loves hands. What better place is there? Peace.

[SkeeterFranklin]

Daily, I wish I could give you and the family some awesome works of comfort, but are not any at a time like this. What comes to mind right now is what JayBee said. That beautiful baby could not be in better Hands, as are you and Rykin's dear family. It has been said that God doesn't cry, but I think He does ... not in despair or without hope ... but because He is all Love, and because God is all Love, we are made for eternity, including precious Rykin. If his body cannot be fixed in this life, God will fix it for eternity. May God's tears shower Rykin, his family, and you with His choicest blessings and peace.

[Zanzibar]

Praying here for healing and also strength for the family.

[Mona]

Lord, we ask for mercy and thank You for Your love and attendance to each detail of this baby and family. We confess that You are the God of creating and recreating. We bless Your Holy Name and ask for the very best You have to give to this child. In Jesus Name, Amen.

[lynnmosher]

May the Lord give peace and comfort to you and the family.

[Thandiwe]

Hi daily4Him.

I read your post about Baby Rykin.

Please can Rykin's parents read Isiah 53 verses 4 to 5? They need to stand on that
Scripture vehemently. Jesus wasn't scourged for nothing, but so we as His children
might have life, and life to it's fullest.

Don't expect Rykin's life to end early. That's not God's plan for him. By the Lord's stripes
we were healed. All of us until the end of the Age, if we just use our faith in what He did
and believe! The devil doesn't want mankind to know the full depths of the Scriptures, because knowledge is power.

I'm teaching my brother Chris whom doctors diagnosed with cancer these deeper revelations, he's still getting it.

Come back to me on this one, please.

[Mouse5]

Praying for all of you.