Thursday, December 16, 2010

Tino De La Rosa

Our third son was born on May 14,2007 a healthy full term baby…or so I thought! It had been four years since I’d last held an infant, so Tino’s rapid labored breathing didn’t set off any alarms and our first two days after delivery were uneventful. On the third day, my nurse said I could go home, so I packed and prepared to leave. Tino’s pediatrician walked in for one last exam. He said something didn’t sound right with his heart. He suspected a heart murmur, but would have to do an echo. In my mind, I kept thinking this is silly, Tino’s fine. I have two healthy boys at home and neither my husband or myself have any health issues. I was nervous and anxious but trying to hide it. So I sat and I watched as the echo was performed. Finally, the doctor came in and said “I’m sorry. Your son has a malformed heart. He will need to be transported to St. Josephs Hospital.” In a matter of minutes, they took my baby, my newborn son and prepped him for his first helicopter ride to a place I had never heard of. This was happening so fast. Just a moment ago, I was packing to go home. So many thoughts raced through my mind: Is my son going to die? What did I do wrong during pregnancy? What other defects could he have?

I wasn’t allowed to ride with him in the helicopter so the drive to the hospital was the longest of my life! I don’t even know how we got there, but we did. There was our precious 3 day old with Ivs, leads, and machines everywhere. What a shock this all was! We finally sat down and talked to Dr. Alboliras who
explained to us that Tino had a complex congenital heart defect called Double Inlet Single Left Ventricle (DILV). He would require a series of three open heart surgeries: one at six weeks, four months, and the last between ages two and four depending on his condition. Knowing absolutely nothing about heart
disease, my husband and I were devastated. Tino spent 6 weeks in the NICU. I visited him at all hours and cried endless days and nights for my son. I was saddened by the thought of him never being able to live a normal life and terrified of the upcoming surgery.

I informed myself as much as possible on positive stories of survivors and kids living with congenital heart disease. I soon realized that my son is special and he is strong. Dr. Cleveland and Dr. Nigro performed his surgeries and he couldn’t have been in better hands. He had his third surgery, the Fontan Procedure, in May 2010. He was in the hospital for eight days and he continues to show me everyday what a true miracle he is.

He has proven himself a warrior and now at age three, he has more energy than his mother!

Saturday, November 20, 2010

Bodie Isaac Bennett

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 5 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections). The day he finished his antibiotics, he was discharged (July 21st)!

He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home! On September 13, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. Although he came out of surgery intubated and on nitric oxide (to help with his “twitchy” pulmonary beds), by all accounts the surgery was a success. He was extubated the next day and home 4 days later!
Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He is a people person and loves to smile and laugh at anyone who looks in his general direction. He just recently passed his swallow study, so we are able to stop thickening his feeds! He LOVES to eat, roll everywhere and play with his big sister. He has PT to help him catch up in his gross motor skills, but other than that, is just like any other 8 month old. He is an absolute joy for us!

We know Bodie has at least one more surgery in his future, but we hope to get a reprieve from hospital stays until the Fontan (sometime between 2 and 3 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.

Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!

We do have a blog for Bodie –

Monday, October 18, 2010

Ethan Skidmore

Ethan Skidmore, our fourth child, was diagnosed with Hypoplastic Left Heart Syndrome at 19 weeks in utero. We were told he had it very severe and would require a series of three surgeries to make him a “half-heart” baby. We chose to have an amniocentisis to see if there were any other syndromes that would complicate his journey. We wanted the team of doctors to be well prepared when he arrived. Nothing new was discovered with the amnio.

We were overwhelmed after diagnosis. Many tears were shed, but we were determined to see the course through and be there for our child every step of the way. At 27 weeks along Ethan developed further complications called Pleural Effusions (fluid around the lungs). We were told he may not survive. After being closely followed Ethan was carried to full term and his effusions were very small. He was born in February. He needed no breathing assistance at birth and looked like a beautiful healthy baby. And from birth everyone talked about his amazing eyes. He could focus on you since the day he was born. His eyes showed so much expression and were the window to his soul. They showed his determination.

At 6 days old he had his first open heart surgery. The Norwood procedure with a Sano shunt. The Sano shunt was used instead of a BT shunt. Ethan had a surprise in surgery. He had a right sided aortic arch that went a did a full wrap (or ring) around his esophagus. Most rings are formed from one of the arteries that branch off the aorta. But his ring was his actual main aorta. Ethan already required extensive repair of his aorta from the HLHS, the ring made it a very complicated Norwood Procedure. He ended up with a trache from vocal cord paralysis from the aortic ring repair. We were told it would only be for a few months until the nerves healed and his vocal chords began to work. He also got a G-tube for feeding because they would not let him drink by mouth. There is high risk to aspirate formula into the lungs when his trachea and esophagus were healing from surgery.

Shortly after surgery his pleural effusions returned full force. Ethan endured several chest tubes to drain the fluid. Pleural effusions are a common complication from heart surgery, especially for single ventricles (half heart babies). However his problem was greater than most, and occurred even in utero, before surgery. They referred to Ethan as having “effusions of unknown origin”. Ethan also had wet lungs. His lungs absorbed too much. One philosophy behind his lung problems/effusions is that his PFO in utero was EXTREMELY small. Thus the pressures on the right side of his heart were too high and that puts high pressures on the lungs. They feel his lungs went “bad” in utero from this. Finally they put Ethan on a super nasty formula called Portagen (grateful for the G-tube at this point) that had no fat. They combined that with LOTS of diuretics to keep his lungs dry! His effusions finally got under control and he was able to come home at 9 weeks.

The first 2 weeks home were very stressful with his trache. I was denied home nursing care because he was too “fragile”. They wanted to send Ethan to Los Ninos, a nursing care center for children. But being a nurse, I would have nothing to do with that. I wanted him home with his family. Spending 9 weeks hardly seeing my other 3 children made me want to be home with him even more. Home he came and my kids just loved on him.

At 11 weeks of age he was able to have his trache removed after he had a heart cath. His vocal cords were working again. They made us stay a few days to watch how he did with no trache and then we headed home. We LOVED having him home the next couple of weeks. He was still hard to balance. Some days he required extra diuretics when his oxygenation would get too low. It was definitely a balancing act with him. But he thrived so much just in those few weeks. He was smiling, playing with toys, and loving his siblings. The bad news from his heart catheterization is that his Sano shunt was indeed narrowing. If his shunt were to close off he would die. Yet his next open heart surgery, the Glenn, would re-plumb blood directly to his lungs thus putting his already fragile lungs under higher pressure. We were walking a fine line and every one knew it.

On June 2, when Ethan was 3 ½ months old, we went ahead with his second open heart surgery, the Glenn procedure. He did well at first, everyone was surprised at how well he was tolerating the new circulation. He did get pleural effusions, but that was expected of Ethan. He was playing with toys and giving sheepish grins at 6 days post-op. However things quickly changed at about day 10. One of his chest tube sites got an infection and his heart grew collateral veins to relieve some of the new pressure. His pleural effusions became worse than ever. In a matter of 24 hours Ethan was clinging to life. He was re-intubated and his oxygenation was in the mid 60’s. He started putting out over 700ml of chylous fluid a day out of his chest tubes. That let to blood clots and even more complications. And of course more and more chest tubes as new locations needed to be reached or old tubes clogged.

Ethan became a balancing act for the next 6 weeks. I have never prayed so hard in my life. I felt complete despair at my childs suffereing, yet complete beauty and peace as I knew he was being closely watched over. I wish I could describe it better. But it’s too personal, so tangible to feel, but not possible to explain.

My one and only regret in Ethan’s care came at the end of July. He was finally making progress to be weaned off the ventilator. He seemed to be doing better, yet he started having fevers. Infectious disease was stumped. Their only explanation became that maybe his body was reacting to having so many IV lines and meds or reacting to the damage that occurred to his lungs during this period. Dr. Cleveland approached me and said it is time to trache him again. Despite his progress he had a LONG road ahead. I said no. I asked if we could just give him a chance to breath on his own. They agreed to try. It was not a good choice. He did breath on his own. And after he went through the withdrawls (he had been under sedation for nearly the whole 6 weeks), he was even smiling again. I was soooo happy. I thought he did it. . . He fought back. He is going to come home.

The good days were very few and soon he became very fussy and skinny! They had to increase his diuretics to keep his lungs dry enough so they wouldn’t have to reintubate. I think they tried too hard to keep from putting him back on the ventilator. By this point everyone was in Ethan’s cheering section. All the doctors, nurses, and respiratory team wanted him to stay off the breathing machine. But one night he stopped being able to oxygenate well enough. He was re-intubated and many more test were run. Ethan’s echo’s showed his heart was functioning properly, but a blood test called BNP that determines heart failure came back at over 10,000. BNP is the chemical your heart produces when it is stressed or in failure. The number should be below 100. This chemical, as well as all the diuretics caused him to go into kidney failure as well. The BNP was most likely the cause of his fevers this whole time.

The team got him stable and then Dr. Cleveland came in to give us a talk. Ethan was too hard to balance. There was nothing they could do but try to get him more stable and then he would need a heart transplant, and most likely a heart and lung transplant. Heart and lung are very hard to come by and don’t have nearly the success of just a heart. I was devastated. I had researched this before birth. Combining that with being a nurse made me walk through my own personal hell for the next few weeks. I knew my child had suffered so much, and still was not even close to being out of the woods.

I began to realize that despite the amazing advances in medical care, that Ethan’s life was not ever going to be one with much quality. I was fine with delays or handicaps, as long as he could be home. But he was a constant balancing act. I finally realized what they told me when he was diagnosed in utero. He was a VERY SEVERE HLHS. I love all my children and only want what’s best for them. At this point I started to realize that there were worse things than death. . . and my Ethan was living it. Even the look in his eyes were changing. The fire was fading. He had endured so much.

My husband and I were ready to move forward and try for transplant. We would have to move out of state because St Joseph’s was not Transplant Certified at this time. But I was also ready to move forward on another very important decision. . . I wanted to make my child a NO CODE, or DNR (do not resuscitate). My husband wasn’t ready for that though. We have strong religious beliefs and know there is life beyond the grave. We KNOW we will be with Ethan after this life. But my husband felt if we made that decision it was like we were giving up on Ethan.

Over the next few weeks Ethan received another tracheotomy and swelled up to the size of the Pillsbury dough boy since they had to take him off his diuretics to let his kidneys recover. His fevers were real bad. More bad news kept coming. His initial blood work ups for Transplant showed he had a rejection factor in the 90th percentile. There was also initial talk that he may not even be a transplant candidate. We did all we could to comfort our sweet baby. He held our hands/fingers, we rubbed his beautiful head, and we sang to him. He LOVED it when we sang to him. Since the Glenn surgery I can count about 10 times that my husband and I were able to hold him. So finger holding and singing became our bonding time with Ethan.

I approached my husband again about making him a DNR. We decided to make him a “short code”. We told them if he were to need full resuscitation that we would want them to try for 10-15 minutes and then let him go if he wasn’t responding by then. Less than a week after this decision a middle of the night phone call came. My husband had been with him and left just before midnight. Ethan was doing great so daddy decided to come get some sleep in his own bed. An hour after dad left, Ethan left. A short code was unsuccessful. Ethan’s milrinone (IV heart failure med) had been turned off that evening. He was just on an oral one now. His ventilator was switched to auto mode (meaning he was breathing on his own). They were going to take him off the ventilator in the morning. With his fragile heart and lungs this deemed too much change for him. He got a little bit off. He had been way worse at other times. But not this time. Just a little bit off. Like I said, he was ready. And more importantly he knew mom and dad were finally going to be okay with his exit. Not all will be able to choose their time to leave this mortality, but Ethan chose his time.

It would not be fair to end this story without acknowledging the amazing outpouring of support our family, and Ethan, received through this journey. We came to know so many wonderful people in the heart world. And our friends before this journey began, have become like family. We were shown love and service beyond measure. I still shed tears almost daily for Ethan. Some are tears of joy, and many for sorrow. But we are so grateful for the six months he gave us.

Friday, April 9, 2010

Braden Beck- Double Outlet Right Ventricle with Transposition of the Great Vessels, VSD, ASD & Prolapsed Mitral Valve

Braden Russell Beck was born October 4, 2002. He weighed a hefty 7 pounds 3 ounces and we were overjoyed. He was the first baby for myself and my husband Rusty. High School sweethearts and only 23 at the time, we were about to grow up very fast.

I had a normal pregnancy and delivery and our room was filled with family and friends shortly after his birth.  After the Ooh's and Ahh's were finished and our family went home, Rusty headed with Braden to the nursery for his bath and newborn shots. I had just gotten settled in my post partum room and my lunch had just arrived, when Rusty walked in the room with  look of panic on his face. He finally said, "They think there is something wrong with his heart."

It took about nine hours for the pediatric cardiologist consult to arrive. As soon as the echo was repeated and x-rays finished we had our entire family with as as the doctor explained the basics of Braden's defect.  He drew us a picture showing us where all the anomalies were and the entire time I remembered thinking to myself, that I had no clue what a normal heart looked like! At 12 hours old Braden was Life Flighted to nearby Phoenix Children' Hospital and admitted to the NICU.  As more defects were discovered we felt helpless. And ultimately his entire diagnosis was Double Outlet Right Ventricle with Transposition of the Great Vessels; a VSD, an ASD and a prolapsed Mitral Valve. After 8 days, numerous Echo's, EKG's and blood work we finally were able to get him to gain some weight and were allowed home.

Quickly our routine of feedings, giving meds, cleaning up everything that didn't stay down from the feedings, diapers and doctors appointments consumed our lives. He was stable and gaining ounces every week. When he was two months old a routine cardio visit ended in a diagnosis of Failure to Thrive and a trip to Phoenix Children's to place an NG tube. What should have been a 24 hour stay turned into nearly three weeks in the PICU as we discovered he was in heart failure. On Christmas Eve 2002, Braden had his first heart procedure- a cardiac cath. We knew the risk of enlarging his VSD was high , so they had the OR prepped for him in case they needed to do surgery right away. Luckily, he did well and spent his very first Christmas recovering in the PICU.

At the time Braden was born there was only one Pediatric CardioVascular Surgeon in Arizona, and he had just been in a serious car accident. The 'replacement' PCV surgeon felt a single ventircle repair was a good option. As a family, we felt that he could have a full repair done and sent his records to several surgeons across the U.S. Eventually, we decided to take Braden to Dr. Frank Hanley at Lucille Packard Children's Hospital at Stanford. Then, for the next two months we focused on getting him to gain weight. He was on 28 calorie formula round the clock.

The day he turned 4 months old we boarded a plane for Palo Alto, California with my husbands parents and high expectations. On February 7, 2003 Braden had his first open heart surgery. I think I aged about 20 years in the ten hours we waited while he was in the O.R. Nearly 15 hours after we hugged our baby goodbye in the hall, we were taken back to see him briefly.

I was not prepared to see him post op.  The emotions of feeling so grateful they made it through, and yet so sorry for the pain they are in --all at the same time, it was overwhelming.  I am sure every Heart Mom knows just what I mean.

 It took a week to wean him off the ventilator and I got to hold him for the first time on Valentine' Day. He faced heart block, pace maker issues, became addicted to the pain meds, and had to go through withdrawal all in the two and a half weeks of his stay in the CVICU. But there were high points as well. He laughed his first ever laugh on his Daddy's birthday and learned to put his paci back in. A few days before we were discharged our surgeon told us he had thought Braden had about a 15% chance of making it out of the surgery. And I think that was the first time we really realized just how severe and rare of a defect he had. His progress amazed everyone.  His case was even studied at an international convention for PCV Surgeons. We went back to the hotel in California, pulled his NG tube for the final time, and booked a ticket home.

He excelled, gaining weight, weaning off his Lasix and was doing great...for about two months. Then, he went into heart failure, again. The sutures in his repaired Mitral Valve hadn't held and he would require another surgery. In August of 2003, at ten months old, we again packed our family up and headed back to LPCH.
Dr Hanley met with our family in pre-op and discussed his hope to be able to repair his valve and not replace it. Thankfully, this surgery would only be 5 hours long and went perfectly. They were able to use his own pericardium to do the repair.  I know they say kids rebound quickly, but on only his second day post op, we found him sitting, playing and smiling in his bed.
We were discharged four short days after his surgery. To everyone's surprise he came home on only Tylenol. He required no heart medicines of any kind. He hit a huge growth spurt and became a 'regular' toddler.
Currently, Braden is almost 8 years old. He only sees the cardiologist, Dr. Nowlen, once a year for an Echo and exam.  He is amazing. He has no limitations. He plays soccer and baseball and competes on our city Dive Team in the summers. We have expanded our family and Braden has two younger heart healthy brothers, Berkley (10/06) and Brenner (8/09). We are thankful everyday for the wonderful blessing he is in our lives.

I think the most amazing part of his journey has been my ability to talk with other families going through this process. In several cases good friends have been diagnosed in utero and I was able to hold their hand as they cried and later help them pack for hospital stays. Just this month my new little niece was born and she too has a heart defect and it has been so comforting to my brother and sister in law to have us guide them through this difficult journey. I welcome any Heart Mom's who need to vent, cry or have questions to contact me or another Heart Mom- because it helps so much to know you are not out there doing it alone.

Wednesday, March 31, 2010

Owen Simmons - Hypoplastic Left Heart (HLHS), Pre-Transplant

Owen was born on January 28, 2008 with a severe heart defect, Hypoplastic Left Heart Syndrome. The left side of his heart was underdeveloped and without corrective surgery shortly after his birth... he would die. The corrective surgery is performed in three stages... the Norwood (birth) , the Glenn (3-9mo) and the Fontan (2-4yrs).
On Owen's one week birthday, he underwent his first open heart surgery, the Norwood. There are no words to describe the heartache of sending our newborn son to the operating room, not knowing if we'd ever hold him again. We paced the waiting room at Phoenix Children's Hospital for 7 LONG hours waiting to hear that he was okay.
Owen recovered quickly from his first surgery. He was considered "FRAGILE", but after spending his first 30 days in ICU, he came home with seven medications and an NG tube for feeding.

We took him in for a heart catherization the last week of March 2008 to find that he was in heart failure. His heart function was decreasing, his tricuspid valve was moderatly leaking and his heart was working overtime. Owen was admitted to ICU and placed on Milrinone to strengthen his heart and prepare him for his second open heart surgery, the Glenn. One week later, we felt he was ready and he went back for surgery two. We were scared breathless when the doctors didn't know if he'd make it out of this surgery. He was weak, his oxygen saturations were low and he had a hard time coming out of the OR. His sternum and skin were left open again, this time in case they had to get in an emergency. Thankfully, he had a major turnaround during those first 24 hours and was on his way to recovery.

Owen spent another 30 days in ICU until he was ready to come home.
Owen remained in a "fragile" state after his Glenn. His tricuspid valve regurgitation is still moderatly leaky and he has some narrowing in his arteries due to built up scar tissue. On June 4th, he was back in ICU for another cardiac catherization to balloon open his narrowings and coil off excess collaterals. This helped for a while, but he was back in ICU on October 15th for more coiling of collaterals and balloning of his arteries. During this 6 hour procedure, they determined his heart continues to fail. His function is decreasing, his tricuspid valve is leaking more and his pressures are high. His surgeon sat us down and explained there is nothing more they can do for Owen's heart.
Owen will need a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona doesn't have a pediatric heart transplant facility, so we would need to research and relocate.

We visited UCLA in December and Owen had his first transplant evaluation. We sat back and waited for all the test results to come back. It was a LONG four weeks of waiting.

The news wasn't good. Owen has extremely sensitized antibodies built up against many common antigens. This will make it very difficult to find him a heart, and he is considered high risk for rejection. In January 2009, we started pre-treating Owen's antibodies with IVIG (immunoglobulin) and Rituximab (chemotherapy). He was hospitalized on four separate occasions to receive his treatments. After four weeks of treatment... we drew his labs once again, and waited.

Once again, we waited four long weeks to get the details of his antibody results. All of the treatments failed. Owen's antibodies didn't budge. Since Owen is now considered high risk and did not respond to his first treatment, we've decided to look at other transplant centers that have experience and knowledge in working with antibodies in transplant patients.
I called every pediatric transplant center in the nation and spoke with their transplant teams. Of all the wonderful hospitals to choose from, we chose Lucile Packard Children's at Stanford as Owen's transplant hospital.

Owen is currently being treated for heart failure. He is fed 100% by tube, he is on 7 medications, 1/2 liter of oxygen and he tires easily. Owen has PT, OT, Speech and Feeding Therapy weekly and is catching up in all areas of development. We visit our local cardiologist every four weeks and travel to Stanford every six months. Owen is monitored very closely and when the transplant team at Stanford feels it is time, we will get him listed for his new, perfect heart!
We PRAY everyday that Owen will be taken care of. That his smile will continue to brighten our lives. We want to watch him grow up, go to school, find his talents and passions in life. His spirit can light up a room, his laughter is contagious and his smile brings HOPE to everyone he passes. He is OUR miracle and a JOY in our lives.

Friday, March 26, 2010

Welcome to Family Heart Book! 

About the Family Heart Book...
Family Heart Book was designed to give support to all the families that have had a child born with a Congenital Heart Defect.  Having a child go through major heart surgery among other complications really takes a toll on your family and it's so important to have support as well as an idea of what's to come, etc.  As many of you know the best support are the ones who've been there and who know exactly what you are going through, and the Heart Families are the best--there's no doubt about it!!  Hopefully this book will give you that!

This site was developed to share our Heart Babies with each other and we are hoping that you would like to be a part of it!  Our goal is to get as many families involved and produce a book that will not only be a keepsake for you, but to also give strength & hope to the new families enduring this amazing yet very stressful time in their lives.  This book will feature your childs journey through your eyes.  It will include pictures of each child & their families as well as honor those doctors, nurses & hospitals that we spent most, if not all of our time when they were born, in one of my favorite sections, Heart Heroes.  For the new families that are to come, we will be producing a new book each year so that we can be sure to have every one included! 

If you are interested in being a part of our book, please contact Ashley Majorek at  to get all the details. I look forward to hearing from you!!