History

Sunday, December 31, 2006 11:48 PM CST

Merry Christmas & Happy New Year!
I wanted to share a story with all of you that would make you very Proud of OUR great nation.

Przha Omer Amin, a beautiful 4 year old girl from Iraq sat in her bed in the Pediatric Cardiac Surgical Intensive Care Unit at the Armed Forces Institute of Cardiology in Rawalpindi, asking for tea. Przha had undergone successful repair of her congenital heart defect just hours before by a combined team of Pakistani and American doctors. She was happy, her father was happy, and the medical team was happy. What could be simpler? The story is quite complicated, however, and required the collaboration of a number of individuals around the world.

Since the war began in Iraq, children with heart disease have not been able to receive surgical treatment in Iraq . A number of agencies and humanitarian groups around the world have helped to get these children out of Iraq for surgical repair. The International Children's Heart Foundation was contacted and asked if we could help. Rather than flying these children halfway around the world for surgery in the West, why not try to find a culturally similar country close by where the surgery could be performed? Dr. William Novick, Medical Director of the ICHF, thought that perhaps this would be a better idea. He approached the Surgeon General of Pakistan with the idea last September. Together they spoke with the Vice Chief of Army Staff who thought it was possible and, in turn, spoke to the President of Pakistan. President Musharraf approved the project in early December.

Once approval was received, a host of individuals worked to get Przha and her father to Islamabad while the ICHF team was in Pakistan. Przha arrived on a Monday morning. Her diagnosis was confirmed; she had tetralogy of Fallot. On Tuesday morning she underwent a complete repair by a combined team of Pakistani and American doctors led by Dr. Novick. Surgery was uneventful. She was in the ICU just after noon and was taken off the ventilator at 3 p.m. Her first request was for tea! Przha has done well.

Przha was lucky. Thousands of Iraqi and Afghani children desperately need surgical repair of their congenital heart defects but do not have access to treatment in their own countries. The ICHF makes four trips per year to Pakistan. The Government of Pakistan has agreed to allow up to 10 children from Iraq to come to the Armed Forces Institute of Cardiology during each of these visits. Dr. Novick has asked the Surgeon General of Pakistan to formally request a similar program for the children of Afthanistan.

But funding is an issue. The Armed Forces Institute of Cardiology cannot provide surgical repairs for free to all the children. Additionally, the children and their accompanying parents need airline tickets to get to Pakistan. Hopefully the sources will be found which will allow these children a chance at a future.

This story is on The International Children's Heart Foundation's website (www.babyheart.org) a non-profit charitable organization based in Memphis, Tennessee dedicated to helping children with congenital or acquired heart disease in developing countries throughout the world. May GOD bless them for all the wonderful work they do.
Merry Christmas Charlie. Love, Dada.

Tuesday, July 4, 2006 8:05 PM CDT

Happy Independence Day!
Charlie has some new found independence of his own. He is walking now! He is very proud of himself and is now very difficult to contain. It has been about two weeks now, and he still looks a bit like a drunken sailor with a sideways stagger. In our last update I mentioned the concern over Charlie’s weight, well things have improved. He is now back on the weight chart, and at his year visit he charted at the 3-5% for weight. Yeah Charlie!!! Charlie had a great Birthday, it felt like a true celebration of him and all that he has accomplished. We participated in the Madelynn’s Pacemaker event , we got pretty wet as it rained most of the morning, but the event ended with plenty of sun. (Thank you to those who expressed interest, time really snuck up on me, and we didn’t get the “Team Charlie” thing together, next year.)
There is a great website that offers support to “Heart Families” across the country; www.savinglittlehearts.com . Thus far very little is being done to fund research and promote awareness of Congenital Heart Defects. Saving Little Hearts requested “Heart Stories” to be sent to various national media outlets to increase CHD awareness. We submitted “Charlie’s Story”, and I’ve included it in today’s update.

Charlie’s Story
Our son Charles Michael, was born on April 18th 2005. Charles meaning “strong, man” and Michael meaning “who is like God”. Charlie was born with a Congenital Heart Defect known as “Transposition of the Great Arteries“. Our journey began months earlier when his defect was detected during a routine ultrasound during my 20th week of pregnancy. Words can’t describe the sinking feeling that comes over you when the ultrasound technician seems fixed on the image before her, when just moments prior to that, we were elated over the news that we were expecting a little boy. We would have many ultrasounds over the next 20 weeks in an attempt to confirm his diagnosis. We spent those 20 weeks trying our best to prepare for the birth of this special child. We spent a lot of time in prayer. We prayed for healing, for strength and for peace with whatever may lie before us.
Charlie was delivered at Abbott Northwestern hospital in Minneapolis, MN. A team from Children’s hospital in Minneapolis were present during his delivery. Charlie’s color was blue at birth, as the pressure in his lungs was very high, and his oxygenation levels were very low. He was immediately taken from me and entrusted in the care of the Doctors and Nurses from Children’s. It would be days before I was able to hold my son for the first time.
My husband Paul went with Charlie via an underground tunnel which connects the two hospitals. I stayed at Abbot, forced to wait until the effects of my epidural wore off, before I was able to join my son and husband. Charlie’s medical team literally ran with him in an isolet in route to Children’s, as each moment was critical. Paul followed closely behind, as one of Charlie’s Neonatologist was conveying to him how very sick our little boy seemed to be. We would later be told that Charlie had been “their most difficult resuscitation in a long time”. Charlie would need an emergency surgical procedure shortly after arriving in the Neonatal Intensive Care Unit at Children’s. The procedure known as a Balloon Septostomy would create a hole between two of Charlie’s heart chambers. This hole would allow Charlie to get oxygen rich blood that he so desperately needed. The Septostomy was difficult because Charlie’s septal wall was unusually thick in diameter. The procedure, although difficult, was successful. This allowed him to receive some oxygen rich blood, but is only intended as a “temporary fix”. Charlie would need a life saving open heart surgery. In Transposition, the Aorta (which supplies oxygen rich blood to the body) and the Pulmonary Artery (which directs oxygen depleted blood to the lungs for oxygenation), are transposed. The heart defect does not allow for oxygen rich blood to reach the body. Instead, the oxygen rich blood keeps cycling to the lungs and directly back to the heart.
Charlie now had to recover from what the Neonatologist called “an extreme insult to his little body”. The following day a brain scan would reveal that Charlie had suffered a stroke. The stroke was either a result of the stress of a difficult resuscitation, or it may have possibly occurred during the difficult Septostomy. We were heartbroken by the news. The thought that our child might have additional challenges, besides that of a compromised heart, had never entered our mind. Now we know that so many of these special children also have additional health concerns.
We would spend the next ten days in constant watch over Charlie. I can think of very few things in this world more difficult than witnessing the suffering of ones own child. Feeling quite helpless, we had no other choice but to entrust the life of our child to the awesome and dedicated team who provided his constant care. We would also learn to put all things in the hands of God, as he was in fact Charlie’s creator.
Finally, the day we had both hoped for and dreaded had arrived. Charlie had a five hour long open heart surgery in which his Transposition was corrected. We prayed constantly for the medical team that would work on our son, and that God’s hand would also be present in the operating room. Surgery was successful, and it felt as though we had all experienced a type of “rebirth“ for Charlie.
Now began the difficult road of recovery. His heart would be closely monitored, as theses little hearts can be very unstable following surgery. He would have moments of extreme tachycardia (fast heart beat), both high and low blood pressure, and periods of high fever. In addition to his unpredictable heart function, he was also suffering from episodes of painful narcotic withdrawal. He was given methadone, (commonly given to heroin addicts) to help curb those symptoms of withdrawal.
With all the challenges that lay both behind and before him he met each one with extreme bravery and determination. Each day he showed improvement and became more stable. Finally, we were able to move out of the Intensive Care Unit and onto a recovery floor. Having been fed only via IV or tube, Charlie had to learn to eat on his own before we could take him home. One week later he was eating on his own. We brought Charlie home on May 15th , 2005. Although, we had moments when we felt ill-equipped to provide his care, we were very happy to be home with him. We had missed our three year old, Sophie, terribly. We’re very happy to finally have the four of us together.
Charlie is now 14 months old, and he is happy and healthy! We have regular visits with his Cardiologist, and Neurologist. His heart looks great, and he may have little to no long term visible effects from his stroke. Time will tell. There is the possibility of another open heart surgery as Charlie enters young adulthood, but we continue to pray for his good health. Charlie has opened our eyes and our hearts in a way that nothing else has. We will never be the same, and I thank God for that. I thank God for our Charlie, what a blessing he is.

Wednesday, April 5, 2006 8:55 PM CDT

Hello Everyone…

Wow.. Our Charlie has made so much progress in the last month or so. We had a Special Education Teacher and an Occupational Therapist come out to our house about three weeks ago to do an assessment of his motor skills (as he had entered his 11th month without the ability to crawl). Both Ladies thought that he looked really good considering all he had been through, and that anytime soon he would become more mobile. Well… mobile he has become! He started off with that funny “army crawl” where they pull themselves with their arms, and soon after that he was cruising around on all fours. I knew he would be just fine when after just a couple of days of his army crawl, I witnessed him scoot from one end of our family room all the way to the other end, with his eye on a “prize” that awaited him on the other side (his sister’s toy baby stroller, with a doll bigger than him strapped inside). He than proceeded to reach up for the doll, pull her down onto the tile floor, and bang her plastic head on the floor multiple times, as hard as he could. Thank God, Sophie was no where to be found.

We’ve seen Dr. Singh since our last update and Charlie’s heart looks great, Thank God! His only concern right now is his size, he has gained very little weight since he was about six months old. He doesn’t have much of an appetite, so what’s a Mom to do? Well… like any good Mom, I try to feed him against his will, and that usually ends very badly (with him throwing food on the floor, or trying to dodge my attempts at getting that one last bite in, and ending up with strained green beans in his hair, or in his ear, instead of in his mouth).

We posted new pictures, I hope you enjoy them.

Mindy

Please check out the following website www.pacemaker5000.com . Madelyn’s pacemaker event is a 5K walk/run that benefits Children’s Hospital. Our Friends Paul and Sayleen are on the pacemaker board, and we have volunteered in the past. It’s a lot of fun, and very family friendly with fun stuff for kids. This year we wanted to put together a “Team Charlie” to honor Charlie, and to help raise money for Children‘s Hospital. If your interested in joining us please email me and let me know (mlynnrdh@yahoo.com). We are hoping to have some “Team Charlie” T-shirts made up to wear to the event, it should be a good time.

To Zachariah… Keeping you in our hearts, as you rest peacefully with the Lord.

Thursday, January 26, 2006 3:46 PM CST

Our hearts are heavy… for that which we do not understand.

In our last entry I shared about the awesome group God has blessed us with, I talked about “Our Three Boys” and how we were connected before our sons were born.

Early last Saturday morning Zachariah Jeffrey Greenlee, as his father so eloquently stated on Zach’s Caring Bridge page, was escorted into heaven by Jesus himself.

In the midst of a very sad time, I am so proud to call Jeff and Missi my friends. I have witnessed the Lord shinning through them, as they are dealing with this great loss.

I took the following text from Zach’s site, this was written by Jeff the morning after Zach passed.

“Thank you Jesus our Lord for never leaving Zach's side. Thank you for walking him into heaven and without any pain. He was always yours and you lent him to us to be stewards for the 9 months of pregnancy and the 6 weeks of life that he had. Praise be to God; Amen!!”

Zach will be laid to rest on this Saturday the 28th. Please pray for Zach’s family during this time.

Thank You,
Mindy

Ps. You can visit Zach’s website by going to www.caringbridge.org , go to “visit a CaringBridge site“, and than enter “ zachariahgreenlee “ under site name.

Monday, January 2, 2006 9:26 PM CST

Happy New Year!

I hope everyone had a blessed Christmas, and a terrific start to the new year! We enjoyed the holidays. It was a time for us to reflect, so much has happened in the last year. When we received Charlie’s diagnosis of Transposition, it was explained that although his start would be rather difficult his long term prognosis would be pretty good. I have to admit in the midst of so much fear, it was hard to imagine that things would be ok again. Well, things are better than ok, and I feel so blessed to have my two beautiful children.

Charlie is a very active little boy. He strives on attention. He is “talking” a lot, and is pretty generous with his big wet smiles. He has yet to crawl, and I suppose that might be something to get concerned with. Although, I’m a little embarrassed to say that he is pretty spoiled. Why would he need to crawl when most of the time he gets carted around the house in someone’s arms? He is still our “peanut” as he is just 16 lbs.

“Our Three Boys”
For those of you who don’t know about the way God has blessed us with an awesome support group, I thought I would share our story.

More than five years ago while attending Hosanna! Lutheran church in Lakeville, we joined a couples small group. It was a great way to meet other young couples, who shared our faith. Our group really hit it off, and we quickly became great friends. We meet twice a month in each other’s homes, and as time has passed we have become more and more like family

In October of 2002, our friends Paul and Sayleen, who are also part of our small group, were blessed by the birth of their son Blake. Blake was born with a complex case of Coarctation of the Aorta . He has had three heart surgeries, two of them were open heart. His last surgery was just this last August. Blake is a very energetic happy little boy. His last surgery was a great success, and for the first time his heart is able to keep up with all the things he wants to do. Paul and I are lucky enough to be Blake’s Godparents.

When we found out that Charlie would also be born with a serious heart defect, it was clear to me why we were brought into each others lives (Paul and I, and our friends Paul and Sayleen). They were able to understand and offer support to us in a way that no one else could. We also had our Godson, who was two years old, and completely unaware of his “special heart”. He would run around with the other kids, and annoy his big sister when he felt the need (a typical two year old boy).

Less than one month ago on December 9th , our friends Jeff and Missi, also from our small group, were blessed with the birth of their son Zachariah. Within hours of his birth, Zach was diagnosed with Hypoplastic Left Heart Syndrome. Children born with Zach’s condition require a series of three open heart surgeries before the age of three. Zach will eventually need a heart transplant, probably sometime in young adulthood. He has had his first surgery, and it went very well. He has had a tough time coming off his ventilator, but his doctors think he just needs a little more time. Please pray for our Zach.

Each year there are about 36,000 babies born in the United States with a congenital heart defect. The vast majority of these babies are born with a simple septal defect (a hole in the heart). Septal defects often close by themselves and require no surgery. When surgery is needed it is a rather simple procedure. There are just five couples in our small group, and now three of the five couples have little boys who were born with a serious heart defect.

We take comfort in knowing that God has obviously touched us. He has a plan for us, as he also has a plan for our special boys. We are so thankful for the love and support we have been given through our small group. Chad and Michele, Shelly and Brent, Paul and Sayleen, Jeff and Missi, we love you!

“Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thine ways acknowledge him, and he shall direct thy paths.” PROVERBS 3:5,6

Blessing and good health to everyone in 2006,

Mindy

Ps. In the course of writing this update, we discovered Charlie’s first tooth!

Thursday, September 8, 2005 8:42 PM CDT

Wow… It’s hard to believe that our last journal entry was the 20th of June. The summer has really flown by. What can I say about our sweet Charlie? He is doing awesome. We have seen Dr. Singh (cardiologist) since our last entry, and we left his office very happy, all is well. He’ll still want to get an angiogram on him to check on the blood flow in his coronary artery, probably within the next few months. We also seen Dr. Janosek (Neurologist) and so far he sees no apparent affects from his stroke. In fact Charlie started rolling over just as he turned four months, well ahead of his sister. Affects from his stroke could show up on his right arm and hand within his first year. But, I have to say he sure has a tight grip on his right hand, and he is hardly even aware that he has a left hand!

Charlie loves to be loved! As long as someone has his attention, and his belly is full he is a happy, happy boy. He loves his big sister, and it is so much fun to see the two of them together. Paul and I just looked at video we had taken from the hospital for the first time. My sweet little boy has come so far in such a small amount of time. Watching his video was, and I’m sure always will be, bittersweet. I’ll never know why some things happen the way they do… But, I can honestly say I’m grateful for everything I’ve experienced these last five months, yes, everything. Charlie has opened my eyes and my heart in a way that nobody or anything else has. I’ll never be the same, and I thank God for that. I thank God for my Charlie, given to me just the way he was.

Closing for now,
The Hilo’s
Paul, Mindy, Sophie and Charlie
Don’t forget to check out the photo album.

In my distress I called to the LORD; I called out to my God. From his temple he heard my voice; my cry came to his ears… He reached down on high and took hold of me; he drew me out of deep waters… He brought me out into a spacious place; he rescued me because he delighted in me.
-2 Samuel 22:7,17,20

Monday, June 20, 2005 11:18 PM CDT

Hello...

Charlie continues to do well. He has quite the personality, and we are learning more and more about him each day. He loves to be held, snuggled and loved. He loves his big sister and offers her smiles each day.

We have been and continue to be blessed by his presence. What a gift he is, what a gift each and every child is.

Three days after Charlie was born, another child, Joshua, was born at Abbott with a serious heart defect. Charlie and Joshua had many of the same doctors, and the same surgical team. We have been monitoring Joshua's progress and praying for his recovery as he was still in the intensive care unit when we left the hospital. Paul just checked his web page, and sadly, he has lost his fight. I'm sharing this with all of you so that you may keep them in your prayers as they deal with their loss.

Please check out Joshua’s website and should you feel compeled, sign the guest book. It sure helped us when we were at our lowest.

www1.caringbridge.org/mn/lionheart/index.htm

On Thursday we will see Charlie’s Neurologist and we’ll try to update the site as soon as we can.

Closing for now.
PS: check out the new pictures.

Paul, Mindy, Sophie and Charlie

Friday, May 27, 2005 11:10 AM CDT

Hello…

It’s 11:00 am on Friday morning, and our little Prince Charles is just waking up. Charlie hasn’t quite figured out his days and his nights yet, he goes down for the night around midnight and then the two of us “hang out” usually between 2:00-4:00am. Paul goes back to work on Tuesday so I’m hoping we figure it out before then. Right now I’m getting plenty of sleep because Paul gets up with Sophie.

Charlie is doing great! We seen both his Pediatrician and his Cardiologist this week, and all is well. Charlie is just a peanut, 7lbs 8onces. His Pediatrician said he has some catching up to do in the weight department, but he is nursing really well so I’m sure that won’t take long. Dr. Singh his Cardiologist said that he looks and sounds great! He had an electrocardiogram, and everything looked good. We will see him again in two months.

Sophie is doing a great job as a big sister, she loves Charlie so much. She wants to “help” with everything. The four of us were driving in the car, and I was talking to Paul about how I think that Charlie has Sophie’s nose. Well, in perfect “Sophie Style” Sophie spoke up to make sure we understood that “NO, Charlie has his OWN NOSE!”.

Closing for now…
Mindy

Ps. Check out the new pictures, The top picture is of Charlie with Dr. Moga, his surgeon. The middle picture is Charlie with Dr. Singh, his Cardiologist. We have been so blessed with these amazing, humble, wonderful and handsome doctors!

Tuesday, May 17, 2005 12:55 AM CDT

Greetings from Home!!!

What an amazing little boy our Charlie is! He has been nursing really well, and keeping us up at night just as he should be.

This last month has been such an awesome journey, so surreal. Looking at him now, it’s hard to believe that this is the same little one that had doctors and nurses running, literally running to save him. He is doing so well now, that if it wasn’t for the scars he has to prove his ordeal, I would wonder if this last month was nothing more than one of those bizarre pregnancy dreams. A dream with lots of tears, lots of joy, the presence of God’s angels those that we could see along with a host of those that we could not. A dream that was full of blessings.

Enjoying our Charlie,
Mindy

Ps- Charlie’s cardiologist says that we should wait about a month before Charlie can meet all his fans. We will update with new pictures soon.

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

Sunday, May 15, 2005 11:46 PM CDT

Hello everyone..

I have good news to share with all of you .. We brought Charlie home this afternoon. It seems unreal to finally have him at home where he belongs. I will post some new pictures soon and let you all know how our first night at home went.

That’s all for now.
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".
For those of you who are Charlie-holics, don’t worry this site will be updated at least every other day for months to come. Mindy and I look forward to and enjoy reading what everyone writes daily.

Saturday, May 14, 2005 3:29 PM CDT

Hello everyone..

Charlie’s feeding tube is out. He is now tube, line and monitor free. Hopefully we’ll all be going home soon. Breast-feeding is going a little better but without the feeding tube I think little Charlie will get better at it even faster.
Sorry I took a while posting the new pictures. I wanted to wait until his tube was out.

For those of you who are Charlie-holics, don’t worry this site will be updated at least every other day for months to come. Mindy and I look forward to and enjoy reading what everyone writes daily.

I will try to put new pictures of Charlie about every other day. I know that everyone is always so anxious to see how he's progressing.

That’s all for now.
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Thursday, May 12, 2005 10:29 PM CDT

Hello everyone..

Charlie is getting a little better at breast-feeding. We did have to give him a bottle twice. Mindy will keep trying to get him better at breast-feeding but ultimately it’s up to Mr. Charlie to get good at it. He does have the feeding tube still, but he only gets milk through it from 8:00 Pm to 8:00 Am everyday. Dr. Singh told me that we won’t go home until Charlie is eating well.
Sophie spent the whole day with us again today. She is starting to get a little needy when we’re all together especially if her daddy is holding Charlie.
New pictures will posted very soon.
For those of you who are Charlie-holics, don’t worry this site will be updated at least every other day for months to come. Mindy and I look forward to and enjoy reading what everyone writes daily.

I will be posting new pictures of Charlie about every other day. I know that everyone is always so Anxious to see how he's progressing.

That’s all for now..
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Wednesday, May 11, 2005 9:43 AM CDT

Hello everyone..

Charlie was moved up to the 3rd floor yesterday morning. he continues the learning process of being breast-fed. We won't go home until his feeding tube is pulled out (in a few days) and he starts eating well at the breast, Otherwise he'll have to get the bottle. Mindy will be staying with him every night until we go home.
I bring Sophie up to the hospital almost everyday to see her new brother and she can't wait until we all can go home (then the fun really starts).
I posted 2 new pictures.

We continue to pray that Charlie will recover quickly so we can take him home soon.

I will be posting new pictures of Charlie about every other day. I know that everyone is always so Anxious to see how he's progressing.

That’s all for now..
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Wednesday, May 11, 2005 9:43 AM CDT

Hello everyone..

Charlie was moved up to the 3rd floor yesterday morning. he continues the learning process of being breast-fed. We won't go home until his feeding tube is pulled out (in a few days) and he starts eating well at the breast, Otherwise he'll have to get the bottle. Mindy will be staying with him every night until we go home.
I bring Sophie up to the hospital almost everyday to see her new brother and she can't wait until we all can go home (then the fun really starts).
I posted 2 new pictures.

That's all for now.
Paul

We continue to pray that Charlie will recover quickly so we can take him home soon.

I will be posting new pictures of Charlie about every other day. I know that everyone is always so Anxious to see how he's progressing.

That’s all for now..
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Monday, May 9, 2005 3:35 PM CDT

Hello everyone..

Charlie was moved to a different room within the PICU. He had 2 very short periods of rapid heart rhythms around 3:00 Am this morning. He’s been ok ever since and hasn’t had any more so far. Because of that, He will stay down in the PICU for another day or two. After that he will be moved up to the 3rd floor (the Cardiac floor). It will be a transition period for Mindy & I to take over some of his care before we’re sent home. Mindy is working on breast-feeding Charlie and he is trying to get the hang of it. Sophie is with us today and she’s so curious about everything Charlie is doing. She sat next to Mindy and kept smiling and stroking Charlie’s head as he was eating.
We continue to pray that Charlie will recover quickly so we can take him home soon.

I will be posting new pictures of Charlie about every other day. I know that everyone is always so Anxious to see how he's progressing.

That’s all for now..
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Saturday, May 7, 2005 11:01 PM CDT

Hello everyone..

************************** READ UPDATE BELOW **************************

Saturday 5/6/05 :

Charlie’s ventilator was taken off at 1:00 Pm today. He is doing a wonderful job breathing on his own. We were finally able to see what his face looks like without all the tubes. What a little cutie. Mindy was able to hold him for about 2 hours. It was a wonderful sight to see him cuddled in his mother’s arms.
I will post new pictures of him as soon as I can.

Sunday 5/7/05 :

Happy Mother's Day.
Mindy received a wonderful Mother's day gift, She was able to breast-feed Charlie for about an hour today. He is doing ok considering what he’s been through for the past 3 weeks. If all continue to go well, he'll be moved out of the PICU in a couple of days.

I put up some new pictures .

That’s all for now..
Paul

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Friday, May 6, 2005 1:30 PM CDT

Hello…

Well our Charlie’s ventilator won’t be able to come out today. He is having some withdrawal issues from being sedated with narcotics for so many days. He has been pretty agitated the last few hours, which makes his blood pressure and heart rate increase. The plan is to have him off the ventilator tomorrow. That would make us happy, and moving in the right direction.

Closing for now…
Mindy

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Thursday, May 5, 2005 3:56 PM CDT

Hello everyone..

Charlie’s dressing was taken off his chest today. We are just hanging out with him waiting for him to continue to recover. He has been weaned off much of his sedation medication. He only gets pain medicine when necessary. It’s difficult for us now when we can tell that he is in pain. It is hard to determine whether he is just being a baby and fussing, or if he is in pain from surgery, IV’s, ext… . We can’t wait until we are able to scoop him up in our arms when he is upset. One of the most difficult things about this experience is not being able to hold and comfort him. Hopefully, it will be just a few more days until we are able to show him how much he is loved by our touch.

New pictures will be posted today. Check back if you would like to see them.

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: Thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Paul and Mindy

Tuesday, May 3, 2005 11:25 PM CDT

Hello everyone..

Charlie had his chest closed at 7:30 Pm. The procedure took about an hour and everything went according to plan. If all continues to go well he may be able to come off the ventilator in a day or two.

As Mindy said earlier, Sophie came in to see Charlie this morning. She was excited to see him awake and moving around a bit. She said to Mindy; “when baby Charlie gets well we will take him home, and then he will turn into a little girl”. Unfortunately, she had to break the news to her that no, baby Charlie will always be a boy.

Just when I thought that things would be on an equal footing (2 males & 2 females), our 3 year old Sophie, was hoping to keep me in the oppressed minority.

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Paul

Tuesday, May 3, 2005 10:54 AM CDT

Hello…

Charlie will be back in the Operating Room today between 4:00pm – 4:30pm to have his chest closed. Please pray for him. This should be a pretty straightforward procedure.

Our Charlie has been flashing smiles at his Mommy, Daddy and some of his favorite nurses; I think it may be one of the most beautiful things I’ve ever seen.

If all continues to go well he may be able to come off the ventilator tomorrow.

Sophie came in to see Charlie this morning. She was excited to see him awake and moving around a bit. She said to me; “when baby Charlie gets well we will take him home, and then he will turn into a little girl”. Unfortunately, I had to break the news to her that no, baby Charlie will always be a boy.

Knowing God’s Blessings,
Mindy

Monday, May 2, 2005 2:01 PM CDT

Hello everyone..

************* I updated on the bottom of the page ***************

Charlie is doing very well. He had a fast heart rhythm for about 5 minutes earlier today. The fast heart rhythm is not too uncommon after open heart surgery. Dr Singh was not too concerned about it.
Charlie was opening his eyes quit a bit and has lost a significant amount of fluids. Charlie 's chest might be closed today. If not, it will be done on Tuesday morning.
Sophie is with us today. She's been asking a lot of questions about Charlie. She was very excited to see him opening his eyes. Yesterday, the nurses made us a “May Day” basket and Sophie loved it.
We continue to pray for a very speedy recovery and for God’s blessings.

That’s all for now.

Don't forget to sign the guest book. This web page will be Charlie's forever. Someday when he reads it, he'll relize how many people cared and prayed for him.
Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

Paul, Mindy, Sophie and baby Charlie too.

PS: If you haven't done so, check out the link I've included. It explains Charlie's surgery. The link below might not be highlighted so you'll need to cut and paste it in the address bar.
When you get there, click on the "flash movie" above the heart diagram. When the new window pops up, on the bottom left corner of the screen you can advance to the next scene just like a DVD player.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

PSS: Charlie's chest will be closed on Tuesday between 4:00 & 8:00 Pm. Dr Moga is very happy with the way Charlie has been doing. We're praying that everything goes well tomorrow.

Sunday, May 1, 2005 3:05 PM CDT

Hello everyone..

Charlie is doing very well. His job has been to get rid of all the fluids he is retaining so his chest can be closed soon. Dr Moga, Charlie's Surgeon, left his chest open because the heart swells after surgery and it needs more space to allow for the swelling. Once he looses enough fluids his chest will be closed.

I've included some new pictures. The pictures were taken on Sunday morning. One of the Doctors that was taking care of him before surgery stopped by to check on him and was very happy that Charlie is doing well. He said " his color looks so nice and pink ".

Often times babies who are born with heart defects also have chromosonal disorders. We got Charlie's tests results back and are happy to say that they were all negative.

We have been blessed with a wonderful medical staff. They have done a great job taking care of Charlie and of us too.

Don't forget to sign the guest book. This web page will be Charlie's forever. Someday when he reads it, he'll relize how many people cared and prayed for him.

Thank you all for your continued love, support and most importantly for all your prayers. We love reading what everyone writes everyday.

Paul, Mindy, Sophie and baby Charlie too.

PS: If you haven't done so, check out the link I've included. It explains Charlie's surgery. The link below might not be highlighted so you'll need to cut and paste it in the address bar.
When you get there, click on the "flash movie" above the heart diagram. When the new window pops up, on the bottom left corner of the screen you can advance to the next scene just like a DVD player.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

Friday, April 29, 2005 11:03 AM CDT

Goodmorning everyone..

8:30 Am - Charlie was wheeled to the operating room.

9:20 Am - Surgery began.

10:20 Am - Doctor Singh came out and told us that Charlie was hooked up to the Heart and Lung machine and he also said that everything is going well.

12:20 Am - Charlie was off the Heart and Lung machine and was doing very well. Dr Singh came out and told us that the Surgery was going very well and should be done soon.

1:30 Pm - Charlie's surgeon, Dr moga came out of surgery and told us that the surgery went very well.

2:15 Pm - Mommy and Daddy were able to see Charlie. He looks very good. His coloring is nice and pink. The next 15 hours are crucial but he's on the road to recovery.

We continue to pray for healing and give thanks that the surgery went well.

This is the best Birth-day present I've ever received.

That's it for now.
Paul

PS: If you haven't done so, check out the link I've included it explains Charlie's surgery. The link below might not be highlighted so you'll need to cut and paste it in the address bar.
When you get there, click on the "flash movie" above the heart diagram. When the new window pops up, on the bottom left corner of the screen you can advance to the next scene just like a DVD player.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

I'll post some new pictures soon.

Thursday, April 28, 2005 6:34 PM CDT

Hello everyone...

Surgery is scheduled for 8:30am tomorrow morning. We've met with one of Charlie's Surgeons. His surgery will be more involved than a typical Transposition surgery due to the fact that Charlie only has one coronary artery. Please pray for the Surgeons, Cardiologists, and OR staff. Please pray for our Charlie. Surgery will take four to six hours, and we will try to update as soon as we can.

I am posting a link to a website that would explain Charlie's surgery. The link below might not be highlighted so you'll need to cut and paste it in the address bar.
When you get there, click on the "flash movie" above the heart diagram. When the new window pops up, on the bottom left corner of the screen you can advance to the next scene just like a DVD player.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

Closing for now...
Mindy & Paul

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Wednesday, April 27, 2005 4:04 PM CDT

We have had a great time with Charlie today. He was very alert this morning, eyes wide open. We got to hold him for the very first time. It was awesome!!! We also got some good news today. They did another scan of his brain a couple of days ago, and the results are very promising. The stroke has diminished in size and is healing well, soon there will only be a small amount of scar tissue. We will just need to wait and see if there will be any long-term effects, but everyone we talk with seems very optimistic.

Closing for now...
Mindy

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read previous entries click on "read journal history".

Wednesday, April 27, 2005 12:00 AM CDT

Hello everyone..

I took this picture this morning. Charlie has blue eyes.

Love Paul, Mindy, Sophie and Charlie.

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read yesterday's entry click on "read journal history".

Thanks

Tuesday, April 26, 2005 10:45 PM CDT

Hello everyone..

Surgery is schedueled for friday 4/29/2005 at 8:30 AM.

Love Paul, Mindy, Sophie and Charlie.

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read yesterday's entry click on "read journal history".

Thanks

Tuesday, April 26, 2005 11:25 AM CDT

Hello everyone..

I added some new photos. Click on the "view photos" to see them.
Doctor Singh doesn't think that Charlie is ready for surgery yet so Wedsnday is ruled out. Charlie still has some more water weight to loose. We'll be talking to Doctor Singh later on in the day and we'll find out more from him and I'll give you all an update.

Love Paul, Mindy, Sophie and Charlie.

PS: thanks for signing the guest book, if you haven't signed in yet please do so. Also, if you want to read yesterday's entry click on "read journal history".

Thanks

Monday, April 25, 2005 4:02 PM CDT

Hello Everyone!

We welcomed our baby boy one week ago today (4/18/05). He is beautiful! He looks just like Daddy, and a lot like his big sister did when she was born. After a quick labor and delivery (2 hours), he was born at 3:00pm.

Our Charlie wanted the world to know he had arrived! He was rushed to Children’s Hospital immediately following his birth. An ultrasound of his heart confirmed his in-utero diagnosis of Transposition of The Great Arteries. Babies with Transposition are born with the Aorta and the Pulmonary arteries transposed.

Most often babies with transposition have a hole between two of their heart chambers, known as a septal defect. This defect actually is very beneficial because it allows for mixing of oxygenated and non-oxygenated blood, allowing for the baby to receive oxygen. Our Charlie did have a septal defect but it was far too small in size to allow for “mixing” of the blood.

All babies have an Artery called the PDA, which connects the Pulmonary and the Aorta during gestation. This artery allows for the baby to receive oxygenated blood while in the uterus. It closes during a babies first 48 hours after birth. Babies with Transposition rely heavily on this artery, as it provides them with “mixed” blood. Our Charlie’s PDA was very narrow and was not working properly after birth.

Charlie was receiving very little oxygen after birth, so they preformed a surgical procedure known as a Balloon Septostomy. This procedure opened up the tiny defect he had making it large enough to allow for “mixing” of blood. Normally this procedure is done in an operating room, but our boy needed help immediately. They preformed the Septostomy right in the intensive care unit.

Tuesday morning a head scan was done to help determine if there had been any neurological damage to his brain. Unfortunately, the scan showed that he had suffered a small-localized stroke to the left side of his brain. All of his doctors are optimistic due to the location of the stroke, and the ability of the newborn brain to both heal and compensate in other areas.

His first four days were very difficult as he recovered from what one doctor said was a “great insult to his body”. With each day that passes, he gets a little better. His Cardiologists are very happy with the progress he has made at recovering.

He will need open heart surgery during which they will properly position his Aorta and his Pulmonary Arteries and also correct the septal defect. Surgery is tentatively scheduled for this Wednesday (4/27/05).

Thank you so much for all of your love and support, we are very blessed!!! So many of you have offered to do so much for us, thank you. The most important thing you can do for us is to pray for our Charlie. Pray for continued healing, a successful surgery, and that Charlie will have no ill or long term effects of the stroke. He has already shown us what a special boy he is, and we have been so blessed by his birth.

Still feeling God’s Love and his Presence,
Paul, Mindy, Sophie and our Charlie

PS- At this time we ask that you refrain from visiting. We will try to update this page as often as we can, so please check back. Please sign the guestbook, so we know that you’ve been here.

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