The Riley Faith Rule Scholarship Fund

We have had so many generous family members and friends who have wanted to do something for our family in honor of Riley, so we have set up a tuition assistance scholarship fund in Riley's name at St. Thomas Aquinas. This scholarship will be awarded to a family that cannot afford the tuition at STA, but would love to have there child enrolled. Because St. Thomas is so special to our family and we are so blessed to have our children there, we would like to help someone else have the same for the child. The community of St. Thomas is amazing and we are so thankful to be a part of it.

Eric and I want to contribute each year to this fund and would be grateful for anyone who would like to do the same! Checks may be made out to St. Thomas and the money will go directly to a student's tuition. The staff at STA will select the family that will receive this assistance.

Thank you to everyone for all that you have done for us! We are receiving cards, packages, flowers, and gifts daily in celebration of Riley! We are so very loved!!!

In HIS grip!

Assignment: Riley

This story was written for Riley by someone who wants to remain anonymous, but we love very much!

One day God said to Jesus, "I'm concerned about the hearts of the people. I don't see enough love. Their hearts are cold. We need to send them someone to touch their hearts and rekindle their love for one another." Jesus said "I know just the right person. Let's send Riley!" the Holy Spirit said. "I know the perfect parents; Eric and Jenny Rule."

Then God said, "I will make her with an imperfect heart. With man's modern technology they will see that Riley has a heart problem before she is born and plans will be made to have her born at the very best hospital and get the best of care."

The Holy Spirit said, "I will influence Jenny to write a blog and they will be faithful witnesses to us for all the world so see."

Then God called for Riley's heart to be healed of the original diagnosis and many were amazed at the miracle. But God did not call for total healingfor Riley's little body. Jesus said, "Won't this confuse them?" God answered, "The Holy Spirit will remind them of what was said in Isaiah 55:8-9":
"For my thoughts are not your thoughts, neither are your ways not my ways," declares the Lord. "As the
heavens are higher than the Earth, so are my ways higher than your ways, and my thoughts than your
thoughts."

On the 28th day of Riley's stay in the hospital God asked Jesus: "How many prayers have been sent up for Riley?" Jesus replied, "Tens of thousands! The angels are working overtime to copy them down." God said, "I have felt the hearts changing. The people are more loving. I have seen damaged relationships healed and faith has been increased. I caused the first miracle by healing Riley's physical heart and now Riley has caused the second miracle by healing THEIR spiritual hearts."

Then God told Jesus Riley's assignment had been completed and to bring her home to us quickly. So on that day Riley passed to Heaven and was met by Jesus and told "Well Done!" Jesus told Riley that she accomplished more for eternity in 28 days than many do in a lifetime.

Jesus then asked the Holy Spirit to remind us all of those who loved and missed Riley of Romans 8:28:
"And we know that all things work together for good to them that Love God, to them who are called
according to his purpose."

God has given us all an eternal assignment. Riley has completed hers. What is yours?

-Anonymous

Save a Place for Me-Our Song for Riley

Don’t be mad if I cry
It just hurts so bad sometimes
‘Cause everyday it’s sinking in
And I have to say goodbye all over again

You know I bet it feels good to have the weight of this world
Off your shoulders now
I’m dreaming of the day
When I’m finally there with you

Save a place for me
Save a place for me
I’ll be there soon
I’ll be there soon
Save a place for me
Save some grace for me
I’ll be there soon
I’ll be there soon

I have asked the question why
But I guess the answer’s for another time
So instead I’ll pray
With every tear
And be thankful for the time I had you here

And I wanna live my life
Just like you did
Make the most of my time
Just like you did
And I wanna make my home up in the sky
Just like you did
Oh, but until I get there
Until I get there
-Matthew West


We celebrated Riley's life on Monday with a beautiful farewell! Eric and I are OVERWHELMED by the outpouring of support and love we witnessed on that day. The number of family, friends, teachers, neighbors, co-workers, and classmates that came to St. Thomas to remember Riley with us was amazing. Our family is truly blessed by all of you and we are so thankful for all your love. Riley was a beautiful child and we will always mourn her death, but we rejoice in her new life too!

As I was talking with Madeleine tonight about Heaven, she asked me if Riley is a baby in Heaven or is she older? I told her that I didn't know the answer to that question. Although, I do picture her to be old enough to have pigtails in her strawberry hair playing and running all around! My children have great questions and we are praying for God to guide us on how to answer them.

On behalf of our family we would like to thank everyone for every little gift, which may have been a bouquet of flowers, a casserole of dinner, babysitting for our children, a phone call, a letter, or a prayer. We had to lean on everyone we love to get through this time and are so grateful for you all!!!!

In HIS grip!

A Celebration for the "Life of Riley"

As we come home today without Riley, we are sad, but have comfort in the fact that she is perfect now in heaven. This truly is the only reason that our family can feel peace and joy at this time. Please pray for our other children that they too will find a peace and understanding with Riley's passing. God's plan for Riley's life was bigger than we ever imagined.

As Eric and I sit here tonight we can't believe what an amazing experience this whole process has been. We have never felt such strength and support. At U of M Riley had the privilege of the best care possible. The people we met, including the doctors, nurses, technicians, social workers, and the families that also had patients in the cardio thoracic unit have changed our lives forever. Each and every person that met us, and got to know Riley, could not believe how blessed we are with our extended family and friends.

Thank you to everyone who has commented on our blog. We look forward to your thoughts and prayers that are posted each and every day! In celebration of the "Life of Riley" please join us on Monday, April 12th at St. Thomas Aquinas Church. Visitation will be from 10:00-12:00 and the Mass will begin at 12:00p.m. Lunch will be following at Eagle Eye Golf Course for anyone who wishes to attend! The people at St. Thomas Aquinas church are our family and friends and we are so thankful to be a part of the school and church community!



In HIS grip!

Going Home

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"

The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."



The Lord is carrying us today with the heaviest hearts. We are sending Riley home today, into the arms of her Father! We know she does not belong to us, in fact none of our children do. They belong to the Lord and he is gracious enough to entrust them to us for their time on earth. Riley Faith is a beautiful baby girl who will see the face of God today! For this we rejoice!

We are all in HIS grip!!!!

May the Lord Bless You and Keep You

Our family had the privilege of having a visit by Father Mark, the head priest at St. Thomas Aquinas, today at the hospital. He prayed with us and met Riley for the first time. He pointed out that Riley has taught us all so much with her little life. He commented that Riley has not accomplished anything yet in her life such as, going to school, a fantastic job, or any other notable deeds. What he noticed is that we love Riley simply because she is our child and not for any other reason that she may have earned or because of anything she has become. Father Mark explained to us that this is how the Lord loves us, just because we are His and that is all. His love is not earned, it is just a gift. He then prayed with us, and these are some of the words he said:


May the Lord bless you and keep you,
May the Lord lift His countenance upon you,
And give you peace,
May the Lord make His face to shine upon you,
And be gracious unto you,
May the Lord be gracious, gracious unto you.
Amen.

Numbers 6:22-27

In HIS grip!

Happy Easter

Riley has had a very stable weekend. After her biopsy on Friday she did very well over the weekend. Not many changes were made, the goal was to just have a quiet uneventful weekend. We should find out the results of the biopsy by Tuesday, however, the course of action will be the same. As of today she has weened off of dopamene (sp?), and calcium. She has tolerated these changes quite well. Riley is feeding well!!

On Easter Riley was visited by Mom, Dad, Madeleine, and Lily. She was completely asleep when we walked in and Lily was so loud Riley opened her eyes and looked right at us! Riley better get use to the noise, because when she comes home she will need to adapt!!!

We are praying Riley can tolerate being weened from her medications, this process will take a very long time.

In HIS grip!

Holy Thursday

Riley had a pretty rough night. Her pulmonary pressures doubled and she was in major distress. The nurse increased her oxygen to 100% on her ventilator and increased her nitric oxide. Slowly throughout the night she was very agitated, and we are unsure as to why. Her sedation was increased and she was also placed on a paralytic. It wasn't until early morning that she finally settled down and became stable. Because Riley is not progressing, the doctors want to pursue why and perform a lung biopsy tomorrow. By looking closely at the lung tissue, the doctors can determine their next plan of action. We are hoping and praying that she does not have any findings of lung disease. The results will not be complete until late Monday or Tuesday.

As we sit with Riley in this Holy Thursday we remember how God did not forsake his son as he died on the cross. We know God's promise that he will never forsake us! As Jesus suffered on the cross I can not imagine the pain and sadness this brought to the Father. As we watch Riley we are so sad for her suffering and are comforted in the fact that God will never leave her, or us! This Easter Season has an even deeper meaning for us this year and we are so thankful that God sent his son for us, John 3:16.

Please pray for God to heal Riley!

In HIS grip!

Hanging In There

So they say no news is good news, whoever "they" are! We do not have any further updates on Riley this morning. Her pressures seem stable, however, they do want to replace her ventilator. She sounds like she is squeaking and the tube may have come a little loose in the throat. Other than that it is a hurry up and wait kinda day. Dad stayed with Riley last night and kept the doctors and nurses on their toes. Parents are considered the best advocates for their children and Dad has been very attentive to Riley's needs. Mom got to go home and be on duty with Eric, Madeleine, Christian, and Lily. Everything is good on the home-front!

Happy Birthday to Eric! He will spend an exciting birthday here at U of M hospital with Riley and Mom. Little E goes on vacation with Uncle Bob and Aunt Amy tomorrow to Mexico. (I wish we could all go with him!) Thank you all for your continued prayers and support!

In HIS grip!

Much More Stable

Today the doctors did a CT scan on Riley's lungs and they did not find any obvious lung disease or any findings that concerned them. This is good and bad because this still does not lead us to where the problem is. Once Riley was settled in after the CT scan, in her new private room, she became very stable. The nurses bathed her, changed her bedding, and placed her on her tummy in a pronate position. Because she is holding on to so much excess fluid, shifting her in different positions should help loosen up the fluid. Riley has lost more fluid today and seems less swollen than even this morning.

Tomorrow is a new day and our hope is that Riley continues to get rid of the fluid in her chest, lungs, and abdomen on her own! A new assessment will be made by the doctors in the morning. Every time we seem to get to an extreme situation with Riley she turns the corner and makes some progress. God's grace is endless and so is his mercy. Our prayers (and begging) have been answered yet again. May we begin tomorrow moving forward and not backwards!

Thank you for your prayers and support...keep up the good work!

In HIS grip!

Please Pray for Riley

Riley is having a CT scan done of her lungs today. Doctors are not sure why she is unable to get rid of fluid in lungs and chest cavity. Her pulmonary problems have not gotten any better and doctors are now to the point where they want to start looking for answers as to why she is not improving. Riley had a good week overall, but into the weekend she has gotten worse. By keeping her on maximum medical therapy (medications) we are not helping her. Doctors were hopeful that by now she would have had enough time to improve, and she still may just need more time.

A lung biopsy is also a possibility to help diagnose the problem going on. We also met with a Nephrologist, who wants to do an ultrasound of the kidneys. It may be possible to put Riley on dialysis to help her get rid of the excess fluid. Doctors are searching for a reason why her body is not processing the fluid. We just pray this is another hurdle Riley has to get over and that the doctors can determine what is wrong with Riley and learn how they want to proceed.

Please keep Riley in your constant prayers!

In HIS grip!

Listen To Me

Riley had a very stable 24 hours and is doing well. On Saturday her blood pressure lowered and her pulmonary pressures were high. The doctors were weening Riley of many medications and lowering her nitric oxide on her ventilator quite aggressively. Her body decided that enough was enough and she needed to slow down. Once the doctors increased some of her meds and the nitric oxide she became stable. In talking with one of Riley's nurses she explained that medicine is thought of as an exact science, but when in practice it is more of an art. Each patient responds differently to medications and support, and it is the responsibility of the doctors and nurses to find that perfect balance for each patient! A little more of this, a little less of that, slow down this, speed up that!

When we met with one of the cardiologists today he explained that he is not focused on Riley's stats on an hourly basis or even a daily basis. But rather, he is focusing on how she trends over 5 days or even a week. If you look at the big picture Riley has made many major improvements, which day to day do seem small.

Our prayer for Riley tonight is for the doctors and nurses to listen to her and to hear what she needs. We naturally want this process to happen quickly, but Riley will heal in her own time. Slow and Steady!

In HIS grip!

Two Steps Back

Riley had a rough day today! She decided that her body was not going to adjust to all the changes the doctors were making. In the last 30 plus hours Riley was riding the wave of stability, responding very well to being weened from many medications. She was feeding well and she accepted lower levels of oxygen and nitric oxygen on the ventilator. Today her blood pressure went below the normal range and her pulmonary pressures were above the normal range. The doctors increased her support through medication to get her systems stable. Riley responded to the changes and is doing much better tonight. For every step forward, there may be two steps back. Tomorrow we hope for another step forward for Riley Faith Rule!

Mom and Dad are staying tonight to oversee Riley's care! We are hoping and praying for Riley to continue to be healthy and strong! Big brother Eric and big sister Madeleine came today to visit their little sister. While Madeleine was next to Riley's bedside she watched a nurse draw blood from one of her lines. This was too much for Madeleine to take, she almost passed out! We had to take Madeleine out in waiting room, where she used a damp cloth and orange sherbert to recover. Don't worry Madeleine, your dad and I have felt the same way many times while sitting at Riley's beside!

In HIS grip!

Reasons To Be Thankful

As we sit by Riley's bedside we are realizing how much we are thankful for today! Riley has stopped taking the vasil-pressor and epinephrine medications, two down, 8 more to go! She has weened down on the ventilator and the nitric oxide that flows through the vent. The short term goal is to get her completely off the ventilator and once this happens she can move to a step down unit!! Riley is responding very well to her feeding tube. She is digesting about 96mls of mommy's milk each day, which will help her each day grow stronger. Riley will probably need a few more weeks in the hospital to adjust to her meds and grow!!!

We are thankful that Riley's birth was so amazing! We are thankful we were able to hold her before surgery for an hour each. We are thankful that her left ventricle grew enough to allow her to use both ventricles. We are thankful her surgery was such a success and very thankful that is is over! We are thankful for each and every doctor, nurse, technician, and staff member at U of M hospital, they are truly dedicated people. We are thankful Riley is responding so well to her medications. We are thankful for how strong Riley has been. We are thankful for our family, who has taken care of us and our other children. We are thankful for our wonderful friends, who have all given us much needed support. We are thankful God has given four other children who are healthy and strong, so easy to take for granted! We are thankful to have experienced God's presence and peace as he continues to show himself through Riley's recovery! (Ok that may have sounded like Thanksgiving at Grandma and Grandpa Reid's house!)

Some things we could do without include sleeping away from home, trying to find a parking place, hospital food, missing our other kids, and trying to find a lounge where we can actually sit down. We have been taking turns where one of us stays at the hospital, while the other parent goes home to be with the kids. We are not sure which is harder, but it seems we are leaning toward home being harder (-:

Thank you all for your comments on the blog! It is so incredible how many of you are praying for Riley and our family!

In HIS grip!

Slow and Steady

Riley is still adjusting to her chest being closed now, with her blood pressure and pulmonary pressures fluctuating just a bit. Overall she is pretty stable. The doctors did an echo-cardiogram of her heart and said everything looks very good. Last night they had to add another IV because she lost her cathater line. With much a bit of a struggle they finally got a new IV in her hand!

Today Riley was very awake. She is still sedated, but can mover her arms and legs and open her eyes. She actually cried today (minus real tears) and this was very sad for me! Doctors say all of this movement, including the crying, is a good indication of neurological function. Her eyes are tracking, which also is shows positive brain activity.

Please pray for Marihya and Nolan. These are two VERY sick children in Riley's room, who are both on Heart/Lung Bypass machines. Riley was only 5 minutes away from being placed on the heart/lung bypass machine herself on Saturday. We feel very blessed she was able to stay stable and not have to endure the risks of that whole process.

Thank you for all your prayers!

In HIS grip!

The Road to Recovery

Since we last posted Riley has made huge progress! Today the doctors closed her chest and she responded very well! Her blood pressure and pulmonary pressures stayed in a stable range. She also is on a feeding tube getting Mommy's milk! Hooray! Slowly but surely Riley is reaching many milestone in her recovery. As we sit and watch other babies come into the NICU we realize just how far Riley has come since day one.

Dr. Oyhe tried to prepare us before surgery, about how there will be many ups and downs after surgery. He told us to expect for every step forward she may take two steps back. Saturday Riley definitely took some steps back and now today she is taking many steps forward. We are so grateful for how well she is doing! The only reason she made it through Saturday is because God loves her so much and he carried her that day!

Deacon Wayne is the chaplain for the hospital and has met with us several times at Riley's bedside. One day last week, before Riley's surgery, he told us something amazing. He said that sometimes we need to be totally empty of ourselves in order to have room to fill ourselves up with God! On Saturday this is exactly what happened to us and we are so grateful for Deacon Wayne's kind words to remind us of that!

In HIS grip!

Ups and Downs

Over the weekend we experienced many ups and downs with Riley. Saturday was a very scary day! Riley's blood pressure dropped in the 30's and her Pulmonary Pressures were too high. Many options were discussed, but in the end the doctors decided to re-open Riley's chest to relieve the pressure. This helped immensely! One option was to put Riley on a heart/lung bypass machine. This did not become necessary and we are so grateful she had a positive response to the surgical procedure.
Throughout any experience Eric and I can remember, we have never been more devastated. But once again the Lord intervened and carried Riley through. We have never prayed so hard (on our knees) for God's strength!

Sunday morning the doctors were amazed at Riley's improvements! The attending physician said "She is 100 times better that she was just 24hrs ago, must have been some magic!" As we all know there was no magic involved, just God's grace! I prayed with a friend last night who said something strange to me. She told me I was one of the luckiest people she knew! I said what are you crazy, why? And she said that I should rejoice knowing that I am totally reliant upon God and the closest to him I could possibly be. She also said that I needed to turn Riley over to God and let him heal her! We know she belongs to HIM first, but I felt I needed to profess this to him. Each time we give God the glory he amazes us!!!

As of now Riley is stable. The goal now is to ween her from her medications (most of which were at the maximum dosages) and try to lower her Pulmonary Pressures. Small changes. Small steps. Slow progress. We need to be patient and wait for her body to adjust to the new structures of her heart!

Thank you all for your comments! Your prayers are so precious to us!

In HIS grip!

The Waiting Game

Today we were with RIley and learned that her lungs are giving her trouble. They are still wet from fluid and she has pulmonary hypertension in her arteries that are pumping the blood from her heart to her lungs. Her heart is having to work 4 times as hard to pump the blood thru the lungs and the doctors say she is very sick. They are trying another medication (Pulmonary Vasal Dilator) to help with the hypertension and will watch her closely throughout the weekend. We are hoping and praying that Riley will get better, her progress has been very slow.

When Eric and I met with Deacon Wayne he told us the story of Paul from 2 Corinthians 7-10. Paul prayed to God 3 times to help him remove the thorn from his side, he pleaded with God to take it away. God's response was "My grace is sufficient for you, for my power is made perfect in weakness." God wanted to teach Peter that no matter his trials God's grace is vast. The passage goes on to say "Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." Deacon Wayne also reminded us that the more we empty ourselves of us, we have more room to be filled up with God!
We are keeping this passage close to our hearts, because today we are weak and know that HE is strong!

In HIS grip!

Day One After Surgery

Riley did very well after surgery and through the night! The doctors were very concerned that her blood pressure not go too low, so we sat for hours staring at the monitor. She has made it over many hurdles the first 12 hours after surgery, which have been told is the most crucial time! They are weening her oxygen intake from the ventilator and use of nitric oxide little by little today. Otherwise, there will be no major changes today. She is on 17 different pumps with lines that either provide her medication or measure pressure levels in her lungs and her right & left ventricle. Add to that the ventilator, nitric oxide, catheter, and glucose monitor, Riley is very busy getting better!

We are in awe of her strength through surgery and recovery. Thank you to all of you who have been praying for her!!!! Keep up the good work!

In HIS grip!

Surgery Day!

Riley did fantastic today during surgery! Dr. Oyhe (our amazing surgeon) did not need to perform the Norwood Procedure after all. During surgery we were updated several times how things were going. Within the first hour we were told that Dr. Oyhe closed the VSD (hole between upper and lower chambers), created the aortal arch, and closed the ductus. The next step during surgery was to test the blood-flow through the Mitral-valve, testing the strength of the valve and the left ventricle to see if Riley could handle it. Dr. Oyhe concluded that she was strong enough to handle the bloodflow and ended the surgery. Surgery lasted around 3 hours, including prep and post time she was gone for a total of 7 hours.

We were very excited to see Riley after surgery and were so glad to see she looked great! They were able to close her chest after surgery, for which we were very thankful. Originally the plan was to leave the chest cavity open for several days to allow the swelling to go down. This plan was changed when the doctors discovered Riley responded so well to the surgery and the procedure was not as invasive as they anticipated. Now we just need to focus on her recovery. The next 72 hours are crucial for her to heal. The doctors want her to "cruise on auto-pilot" through sedation and the ventilator allowing her body time to get acclimated to the structural changes that have been made.

We can not tell you how many staff members, whether they are nurses or physicians, who are AMAZED by Riley's change in surgery. These people work with cardiac patients and NEVER see this type of outcome. Dr. Oyhe also expressed how pleased he was with the surgery, commenting that everything went as the best case scenario possible.

Thank you for your thoughts and prayers! God got the message that so many people think she is special and loved and he will be glorified through this whole process! On this St. Patrick's Day we remember St. Patrick who spread the word of God, symbolically using the shamrock because of it's 3 leaves. He taught people about the Holy Trinity, The Father, The Son, and The Holy Spirit. We can Praise God for the luck of the Irish Riley had today! What a blessed day!

In HIS grip!

March 16, 2010

Glorious news that Riley will not be undergoing the Norwood operation, but will instead see the surgeon fixing her aortal arch and closing up a hole between the upper and lower chambers of the heart. This hole, referred to as VSD, was probably what allowed Riley's left ventricle to develop enough to support her being a two-ventricle child (along with all the prayers on her behalf). The main concern that remains - along with any of the other concerns of major open hear surgery - is her Mitral Valve. It is a little underdeveloped. What they will do is make the repairs I listed above and then do an echo while still in surgery to see if her Mitral Valve can handle the blood flow and load. If not, they can still do a Norwood at that time.

It is very important to note that if (when) the surgery goes well, and she responds as hoped (expected), Riley will not have to have any other foreseeable surgeries - ever! Again, there is always a chance that with major open heart surgery problems could arise, but this diagnosis and surgical decision to have Riley be a two-ventricle child is miraculous, and will drastically change her life for the better.

She is still scheduled to be taken down for surgery at 7:30 am Wed. morning, with them actually starting the surgery around 8:30. The surgery is expected to take around 4-6 hours. We should start getting news around 1:30.

Keep those prayers a coming throughout tomorrow afternoon and beyond as recovery is also a very dangerous period for her.

In HIS Grip

March 15th

Riley had a very stable day, doing well on her meds and ventilator. The cardiologists did order another echo-cardiogram today to determine some new findings. Now that echo-cardiograms can be performed directly on Riley, and not in-utero, they are seeing things a bit more clearly. There is some belief that the left ventricle has actually grown and is functioning well. The doctors are considering that Riley may be able to use her left ventricle and so they are focusing on the productivity of the mitro-valve. If the valve proves to be large enough to handle blood flow between the right and left ventricle, assuming the left side can sustain the blood flow from the right side, placing a shunt may not be necessary. This would make the Norwood Procedure unnecessary. The cardiologists are meeting tonight to determine what the diagnosis should be and plan what surgery she should have. Riley does still have a hole between her right and left ventricle that needs repair, along with a procedure that would restructure her aortal arch. If she does not need the shunt the surgery could potentially be less serious and could allow Riley to be a two ventricle baby!

We are guardedly optimistic that Riley's diagnosis could change to something very different. We will not find out until tomorrow when we meet with the doctors. Our hope is that Riley could function with both ventricles and could only need only this surgery to repair her heart.

These changes could be answer to prayer! We are hopeful either way that God has his hand in every part of Riley's heart surgery, regardless of the diagnosis.

In HIS grip!

March 14th

Over the weekend Riley was very busy! She met her siblings and had her picture taken with each one of them! Pooh and Punky brought the kids and Riley got to meet her Punky! Uncle TIm, Aunt Brooke, Claudia, Jack, and Ella visited on Saturday evening. Saturday Riley was visited by Uncle Bob, Aunt Amy, Bobby, and Big Brother Eric! Grandpa Reid came later in the day and got to see Riley.

On Saturday the doctors decided to put Riley on the ventilator to assist her breathing. She was laboring quite a bit and now she is resting much easier. She is now on sedatives to help her stay nice and calm, so she will not disrupt her ventilator. She is also on nutrition now, which includes lipids and TPN. A catheter was placed though her umbilical cord to send meds and nutrition straight to her heart. Among other antibiotics and fluids, Riley has many IVs. She seems very comfortable and we are feeling much better about her progress. Her surgery is still set for Wednesday.

We are so thankful to say that we had Riley Faith Rule baptized on Saturday. We prayed over her and were reminded how Jesus loves the little children and they all belong to him! Riley you are a child of God and he was so gracious enough to give you to us!

In HIS grip!

Happy Birthday Riley!!!

Riley Faith Rule was born on March 12th, 2010 at 2:05pm. I was induced in the morning and waited impatiently for her to arrive. When she finally came it was a whirlwind. Riley came very suddenly and even the staff seemed a little bit frazzled. Her arrival was just like her sister Lily's, with one push and she was here! I was able to hold Riley right at birth for several minutes, she has strawberry blonde hair, weighed 6.5 pounds, and was 19.5 inches long. She is adorable and looks like her own little person. Dad was able to hold her also, then he followed her to an assessment room where she was examined.

Once Riley was settled in the NICU we were able to spend time with her. She was given an IV of prostaglandin (to keep airway open in her heart), potassium chloride, and 3 other anti-biotics. She was given oxygen to help her breathe, but otherwise is doing great! We can cuddle her, kiss her, and touch her all we want! Her surgery is set for Monday at this point. For now we are just spending our time staring at her adorable face!

In HIS Grip!

Posted by Mommy

February 26th, 2010

Today I went with Grandma Jay to U of M for a non-stress test, ultra-sound and OB appointment. My fluid levels are in the average range and Riley is doing well. While we were there they did change my induction date to Thursday, March 11th. Dr. Ohye, Riley's surgeon, needed to schedule her surgery to March 15th because he will be on vacation the following week. This will allow us the weekend for visitors and the kids to spend time seeing Riley so it will work out just fine!

Please keep Riley in your prayers! She is in HIS grip! (As my friend Linda likes to put it!)

Mom

February 19th Visit to U of M

Yesterday we had a visit to U of M. First, we had an ultra-sound in Perinatal Assessment. This ultra-sound indicated that my amniotic fluid was borderline low. On a scale of 1 to 10 the fluid measured a 5. 5 and above they do not worry, 5 and below they have some concerns. Because the amniotic fluid is the representation of the placenta, we needed to make sure that the baby has enough fluid and that she is not squeezing her own oxygen supply through the umbilical cord. They then sent us for a stress test to monitor Riley's movements and watch her heart rate. As long as her heart rate was increasing and decreasing as she moved, she is in no danger and has enough fluid to move in. I now need to go to U of M on Tuesdays and Fridays to have this stress test done and to have an ultra-sound measuring amniotic fluid. The physicians at U of M said that if the fluid level stays the same or increases Riley will do just fine. However, if the fluid goes any lower they will need to induce labor. We were also told by hydrating much much more I do have a chance to increase the amniotic fluid, however, there are two differing opinions on if this actually works or not. When I was pregnant with Christian I had the same issue with fluid levels. He was induced on my due date and did just fine!

Riley is measuring 5 pounds 1 ounce! She is growing and developing well, she just needs a few more weeks to add more weight. We checked with the Cardiothorasic Surgeons and if Riley does come early she already meets the minimum requirements for weight to endure surgery.

Between our appointments we did get a tour of the Neonatal Intensive Care Unit (NICU). We saw several small babies and there families and were very impressed with the facility. When Riley is first born she will immediately be taken to a very small "warming room" where she will be assessed by multiple physicians. She may need to be placed on a ventilator, or need other assistance. This room is equipped to handle any of her needs. Once they assess Riley she will be sent to the Cardiothorasic floor to be monitored, this is where she will be until she is ready for surgery. The physicians will determine the surgery date after birth, anywhere from 3 to 7 days of life. Once she has here surgery she will return to Cardio-thorasic floor (generally for about 2 weeks), then she will go the regular NICU until she is fully recovered (generally 2-3 weeks).

Our last appointment was in OB. Here they checked by blood pressure and vitals. We discussed possible scenarios if induction does place sooner than we planned. Our hope is to hydrate as much as possible and pray that the fluid levels do not go any lower!! We will know more next Tuesday, so for now it is time to drink up!

January 21st U of M Visit

Our last visit to U of M consisted of four appointments. First we did the routine ultrasound in the Prenatal Unit, this ultrasound detected nothing new. However, we did get great 3-D pics and think she may look a lot like Lily! Next we meet with the OBGYN completing a routine visit. We set up a birth plan and it looks like we have an induction date of March 15th. We think we have settled on the name Riley, Riley Faith Rule!

The next stop was a visit with the Pediatric Cardiovascular Surgeon, Dr. Ohye, who explained the surgery to us in great detail. This appointment lasted about an hour and a half and was very difficult. Eric and I are very comfortable with the surgeon and like him a lot. He has an amazing passion for what he does and gave us a very real picture of what we will be going through with these surgeries. He indicated that the first surgery will take place between day 2 and day 7 of life. Directly at birth Riley will be taken to the NICU to start medications and possibly a ventilator. She will be on IV fluids, so I will need to start pumping right away! The surgery itself will take between 4 and 6 hours and will require up 12 people contributing to the process. We should be able to see her within the first hour and half after surgery. The details of the actual surgery are quite complicated, but to simplify as best as I can the Dr. will be putting in a stint to redirect blood flow. There is so much more to the surgery and his explanations of the process (including the process of future surgeries), but for now that is the way simplest way to explain it.

The surgeon was very real with us in discussing her recovery. He said for every step forward, she may take two steps back. Each day is a hurdle she must get over and his advice was to try to look a the whole picture of her recovery and not the day to day. Dr. Oyhe prepared us for her physical appearance after surgery. Because open-heart surgery is such a trauma for the body, she will look quite sick at first. He explained that setbacks are normal and may include infections, fluid in the lungs, etc... The standard recovery is 2 weeks in the NICU and 2-3 weeks on the regular floor. They will not send babies home until they are breathing on their own, feeding on their own (may need a tube to help at first), or until they are TOTALLY comfortable with their progress.

Once Riley is home she will be like any other baby and can be cared for like normal. Although Eric said the other kids aren't going to be allowed to touch her, hahaha! The first surgery is called the Norwood and is the most risky, with a success rate of 85%. Her second and third surgeries (Fontain) have a success rate of 98% and will take place between 4 and 6 months and around 18 months.

The last appointment of the day was another lengthy Fetal Echo Cardiogram, which proved no new developments. Because the left ventricle is somewhat developed and is pumping some blood through it, the surgeon is confident that this will help Riley. He said there is no proven research that supports this, but he truly believes babies develop better having some blood flow through the left side. Riley will actually not be using the left side of her heart at all after her surgeries. The blood is redirected to pump other ways. Kids with this condition can usually function physically up to 85-95% as well as normal children. The surgeon said she will not be an Olympic Marathon Runner, however, she will be able to be as active as any normal child!!!

U of M is the #1 Center in the nation for these surgeries! So these doctors are the best you can get! Thank you God for Ann Arbor being here in Michigan and only an hour an 15 minutes away! There are roughly 1,000 cases a year in the United States. These surgeries were developed in the early 80's and have come a long way in their development. Because research is so important to learn how to improve this process, we will be open to contribute in any way we can. It was explained to us that contributing to any research is not an obligation but a choice. And we feel that if we can contribute any medical information from Riley's experience to help those in the future we are absolutely willing!

Our next visit to U of M is at the end of February and will include a full tour of the NICU. At that point we will be able to be put on a waiting list for the Medical Inn, which is the hotel within the hospital. We are praying we will be able to get 1 of the 30 rooms available for the time we need it!

We are confident that Riley's surgeries will be successful and she will be home with us in a few short months. What we are praying for is the strength to endure this whole process and the road that lies ahead. Please pray for her recovery, that the surgery will provide the proper blood flow needed, and that her body will respond well to the surgery.

Please pray Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge him, and he will make your paths straight."