Dear my little man man,

Mommy decided to write you a letter telling you all about your time on this earth and what a great joy you brought to me. I am going to try and include as many details as I possibly can. It has been almost 7 months since you gained your angel wings.

March 2008, I found out I was pregnant. I was so elated. Mommy and Daddy had been trying to have another baby for several months and it had finally happened. You see, Mommy got very sick after your big sissy was born. When she was 6 months old, I was diagnosed with a rare blood disorder, ITP. It devastated our lives. I was very sick for a long time. Then I had some surgeries and it fixed the problem. After I was cleared to try and get pregnant, we tried. We tried everything. Then it finally happened. But then Mommy had a miscarriage. Our world crashed or at least we thought it had. We wanted that baby so badly. On April 22, they told me that the baby was gone and that my body had already began to reject the baby so it would go naturally. I was emotionally scarred. The doctors told Mommy not to try and get pregnant for a while. So we didn’t. But on April 21, the night before they told me the baby was gone, daddy and I made you. You were our miracle from the beginning. Mommy’s doctor told her that he had heard about women getting pregnant while still pregnant in medical school. But he had never seen it actually happen. It happened to your mommy. On May 22, I found out I was pregnant, with you. I was given the due date of January 27, 2009.

I was overjoyed and scared. I was so paranoid that I was going to lose you too. I didn’t know if I could handle it. The pregnancy with you was both easy and hard. In the beginning I was paranoid, but never suffered from the slightest bit of morning sickness. Then I began to show off a baby bump in the third month. I thought it was kind of early to be showing, but the doctors assured me that it was because you were my second baby. I blew it off and went back to enjoying being pregnant with you. Feeling your kicks and punches and rolls was the most amazing feeling. I remember when Dr. Baugh told me that you were going to be a big baby, maybe 9 pounds, and that I might have to have a c-section because of your size. I was excited. I like chunky babies. Then we had the sonogram to determine your gender. I was convinced you were a boy, because the pregnancy was so different than with your sister, Samantha. My gut instinct was right. I was going to have a little Donald Michael-Evans Thomas. I was so happy.

I must explain to you were I got your name. You see, you are named after all of the influential men in our lives. Donald is Mommy’s daddy. Your papaw had no sons and no brothers. So I named you as his namesake because you were his first born grandson. Michael is your godfather’s middle name. The name he goes by. Your daddy and he are best friends. Evans is a generational name on your daddy’s side. Your Paw, Daddy’s father, is named Joe Evans. Your great grandfather was Evans Thomas and your uncle is Joe Evans Jr. You were the first born grandson on that side too, so we named you Evans to carry on the family name. Thomas, your last name, is your Daddy’s last name. The name I took on the day we wed, and would have ended with your daddy, if you hadn’t been born.

The months of pregnancy seemed to come and go, until the last couple of months that I was pregnant. Mommy had an irritable uterus, which caused me to have contractions every few minutes that did not cause labor. I was in and out of the hospital being monitored for pre-term labor. It was a nightmare. The contractions hurt and I couldn’t get comfortable. Daddy tried everything he could to help me, but I just had to grin and bear it.

After I started going to the doctor every week, they noticed that I measured a few weeks further along on fundal height (height of uterus). The doctor ordered another sonogram. You were measuring a little overweight, so they told me, yet again, that you were going to be a BIG baby. At 34 weeks I was measuring 38 weeks. At 35 weeks I measured 41 weeks. At 36 weeks, Dec. 31, I measured 52 weeks. Mommy’s doctor thought I had a tumor on my uterus because I grew so much in only a week. So off to the sonogram room we went. The tech said that I had way too much amniotic fluid and that if they didn’t get you out soon, you would be suffocated. All of this because my uterus had grown to its maximum capacity and the fluid was continuing to build up.

The doctor sent Daddy and I to the hospital in preparation for your birth, 4 weeks too early. I must insert a sort of joke here. All throughout my pregnancy, Daddy told me I had to have you on Dec. 31 so that we could claim you on our taxes for that year. I kept telling him it wasn’t going to happen. That it was too early and that he could forget it. The day you were born, I told daddy that it didn’t look like he was going to get his wish. However, you had other plans and sided with your Daddy. You and he had a special bond and you took his side. You were born at 5:43pm, December 31, 2008.

After you were born, via emergency c-section, they wrapped you up and showed you to me. You were like an angel. So beautiful. Surely the most amazing baby I had ever seen. You weighed 6 pounds 7 ounces and were 18.75 inches long. You had the fieriest red hair I had ever seen.  You were so perfect. 10 fingers 10 toes. I kissed you on the forehead and you and Daddy left to go to the newborn nursery. Despite being born 4 weeks premature, you scored an 8 and 9 on your APGARS. While you went to the nursery, I was stapled up and wheeled into recovery. I was totally oblivious to the utter shock I was in for.

Just minutes after your arrival in the nursery, you stopped breathing and went into cardiac arrest. Your pediatrician did CPR, got you intubated, stabilized your heart with meds, and called for a transfer to the Neonatal Intensive Care Unit 130 miles away. He performed several tests on you including the newborn swallow test. Nothing went into your stomach and he could hear air in your tiny tummy every time the respirator gave you a mechanical breath. He attributed this to a possible connection of your trachea and esophagus. He also did an EKG to determine your heart rhythm. He heard and saw a heart murmur and gave you a shot of medicine in case it was something more serious. We would later find out, that shot saved your life.

As I was being wheeled down to my postpartum room, I noticed everyone in the hallway. Not down at the nurse ogling over your handsomeness. That was my first trigger that something was wrong. As we entered my room, your pediatrician and my obstetrician came in to talk to me. My heart began to race. Questions flooded my mind. I just wanted you. I wanted to hold you, look at you, smell you, comfort you, feed you, do all the things a mother wants to do for her newborn. All of those things were stripped away from me.        

You pediatrician started the world stopping conversation by telling me that you were leaving to go to the NICU and I couldn’t go. He told me that he suspected you had a connection between your esophagus and trachea and that it was causing you to not be able to oxygenate your blood properly. He also told us that you might have a Congenital Heart Defect, but he wasn’t sure. He told us about the EKG and the shot that he gave you just in case. Then my OB told me that when the flight team got you situated, they would bring you down so that I could see you. I couldn’t hold you, I couldn’t smell you, I couldn’t hear you, all I could do was touch your tiny fingers and pray that I would see you alive again. Daddy and his mom drove to be with you at the NICU and my mom and I stayed behind.

I was so out of it, so shocked, and so scared that the only question I could think to ask was “what do I do? I wanted to breastfeed.” The answer I got from the doctors was to pump and bring it with me when I was discharged. So I did just that, I pumped for you. I did it rigorously. Every 2 hours. Your Granny and I would wake up and pump. I would look at your pictures on my phone for inspiration. You were fighting for your life 3 hours away and I was doing the one thing I could do, pump.

After 3 days, I was discharged. Granny and I went to our house and got some clothes and a few other essentials and started on our journey to see you. We prayed so much over those few days. Little did we know that wouldn’t be all the praying we would be doing. While in the NICU, you were diagnosed with a Tracheal Esophageal Fistula (TEF). Your esophagus never touched your tummy. It grew down and closed before it got to where it was supposed to go. You had a third tube off of your trachea that grew to your stomach. So, in essence, when you swallowed, nothing happened and when the respirator gave you a breath, half went to your stomach. This caused your oxygen saturation to be lower than normal. You were also diagnosed with Tetrology of Fallot with Pulmonary Atresia. All those big words meant that there were several things wrong with your tiny heart. Both of these things required surgery. Neither could be done where you were.

At 6 days old, you took your first airplane ride, in a UBA medical jet to Washington DC. Daddy and I flew out the next morning to join you in our nation’s capital and the land of hope for us. The day after we got there, you underwent your first surgery to repair the TEF. The day of your surgery, Jan. 8, you weighed 5.5 pounds. You still had a head full of fiery red hair, the cutest toes and fingers, and the darkest blue eyes I had ever seen. Your surgery took about 2 hours and you pulled through like a champ. No complications during surgery and all was repaired. That gave us a shred of hope, but you still needed open heart surgery.

Over the course of the next 6 weeks, you battled several extubations, which led to reintubations, a collapsed lung, a severe leak from the suture site in your esophagus, several trips to the barium study, tons of pokes, and lots of medicines. All the while, you were receiving the drug that kept you alive, Prostaglandins. That was a name we came to know and to trust. This was also the medicine that you received in a shot at birth to combat any CHD that might have possibly been there. This was the shot that saved your life. It kept you alive until your OHS. During this time, you had an ECHO every day and made several trips to the cath lab. During one of these trips, your exact CHD was diagnosed. Double Outlet Right Ventricle with Pulmonary Atresia, a large VSD, a large ASD, and a leaky mytrovalve. You did not have a pulmonary trunk, the piece that comes into your right ventricle to take the blood to your lungs for oxygen. You had the pulmonary arteries and they were of normal size. However, because you didn’t have a trunk, your PDA was the only connection your heart had to your lungs. Prostaglandins hold this open. That is why it kept you alive. Had your PDA closed, you would have died.   

On February 10, 2009, a day that I will never forget, you underwent your open heart surgery. The first of many, we were told. You were a trooper. You defied all odds. Surgery lasted 4 hours, you pulled through. Everything requiring repair, received it. They were able to close your chest and you did not require ECMO (extended time on heart lung bypass) and no pacemaker. The next day, less than 24 hours later, you were extubated and taken off several medications. In less than 48 hours post-op, you moved to the floor out of the Cardiac Intensive Care Unit. I was overjoyed. My little man, who on the day of OHS weighed 4 pounds 12 ounces, was declaring to the world that he would live.

Then we were faced with our next obstacle, teaching you to eat. Of course, because of Mommy unrelentless pumping, you had plenty of the best milk to begin feeding on. You couldn’t nurse, but you definitely got the best milk you could get. You caught on very quickly and I imagine that if I had went almost 2 months without eating, I would catch on pretty quick too. Mommy was elated that her persistence in giving you the pacifier payed off. If I hadn’t been so adamant in you getting a paci, you wouldn’t have known how to suck. Eleven days after your heart surgery, we were discharged home. I was relieved to finally have my baby, but so scared because of all the care you required. Your big sissy, whom had not yet met you, was so excited that her baby brother was finally coming home.

The first few nights, I lied awake, paranoid. I would check on you every few minutes to make sure you were still breathing and because it felt so unreal to finally have you with me, where you were meant to be. When we arrived at our home, 1100 miles away from what had become our home; everyone was there to meet you. Your Nana, Paw, Papaw, Uncle Jeremy, Aunt Becca, Daddy Michael, Aunt Chasity, Stephanie, Andrew, and of course, your big sissy. She even had on her “I’m the big sister” shirt. After a few hours of everyone ogling over you, like they should have done when you were born, everyone went their ways and the four of us (Daddy, sissy, you, and I) were left to finally settle into some normality.

The next 3 months were filled with doctor’s visits (130 miles away), needle pricks, weight checks, medicine changes, food plans, etc. It was hectic, but all worth it when you were home every day with us. The doctors were concerned about your weight all the time. They never seemed to be pleased that you would only gain a couple of ounces at a time. You weighed 6 pounds 1 ounce the day you were discharged from DC on Feb. 21. They began having me add calories to the breast milk. Even more and more every time we went to the doctor, until finally you were at 28 calories an ounce. You would take about 3 ounces every 3 hours and that stayed the same. You never wanted more. They would tell me to make you eat more, but you refused and I wasn’t going to force you to take it and risk aspiration. Then on May 21, you were admitted to the PICU (130 miles away) for dehydration and failure to thrive. At this time, 5 months old, you weighed 7 pounds 2 ounces.

You were in the PICU for 2.5 weeks all together. They stopped your lasix and pumped you with IV fluids. You got double pneumonia and ended up on Bi-pap. They also put in a NG tube for feedings and told me, your mom, that I wasn’t feeding you and that they would control that now. I was mortified and extremely ticked off. So I told them that there was something wrong with you and that if this was how they would finally figure that out, then great. They finally got my point when after receiving 1 ounce an hour at 28 calories an ounce, you lost a pound. It wasn’t me. Being so upset that they would dare accuse me of not feeding you, I told them that maybe I should get DHS involved because they weren’t feeding you, they got the point and no more accusations were made.

They put in a broviak because you had such small veins and they could keep IV access. I was ok with the broviak procedure. That was until they intubated you wrong and put the broviak in wrong. The wrong intubation caused you to go into respiratory distress and they could no longer feed you. They had also performed an ECHO that showed severe structuring of the artificial trunk they placed in DC. You needed a heart cath and soon. But because you were so small and they couldn’t feed you, they wouldn’t do the cath.

By this time, I was fed up with them playing the guessing game when it came to your care. You needed a G-tube placement and a heart cath, and they would do neither. I demanded a transfer back to DC and off we went. We got to DC on June 6, a mere 5 months since you went the first time. You were so very ill and so very tiny. The first thing they did was get you a g-tube so they could feed you. This was a surgical procedure. While in surgery they took out the broviak that no longer worked because of wrong placement. The broviak had quit working 3 days before we were transferred. However, they refused to take it out stating “we aren’t using it, let DC deal with it”. Needless to say you weren’t going back to that hospital.

Upon removing the broviak you became septic. Meaning the broviak, that the other hospital refused to remove, had gotten infected and the infection was now in your blood. This caused you to have a fever of 106 degrees. They gave you a dose of Tylenol and within 4 hours your core body temp was 88 degrees. You also started having bradiacardic episodes (low heart rate). So you were moved into the CICU for closer monitoring. You were slowly improving and there were talks of you moving back to the floor after a few days. But just like always, you had other plans. At 1:50am, while I was asleep at the Ronald McDonald House, you went into cardiac arrest. It took them about 20 minutes to get you completely stabilized. They called me after you were stable and granny and I headed to the hospital.

Your big sissy went with us to DC the second go around, so granny stayed in the waiting room with her because she was asleep. I came to the back, to see you. A sight, I shall surely never forget. You looked lifeless, pale, a slow heart rate, no movement. I would venture to say, you looked dead. I was so overwhelmed with emotion I just stood there and cried. Then it all happened again. At 4:00am, while I was standing at your bedside and you were getting an ECHO, I literally watched your heart stop. It was so hard to move back and let them work on you. This time was worse than the last. It took almost an hour for them to get you back. All the while, I was crying and talking to you. I would say “come on baby boy, do it for mama, don’t do this to me, bring that heart rate up, come on little man man”. One of the techs sat with big sissy so granny could be with your Mommy. I didn’t leave the room. I couldn’t. I wanted to be there, letting you know I was there.

After they got you stabilized, you were moved to a room closer to the nurse’s station. At 8am, after much prodding by your nurses, granny, big sissy, and I reluctantly went to the RMH to shower and get some food. We were back by 11am. As soon as we arrived back at the hospital, I was in your room. I didn’t want to miss a moment. I didn’t want to fathom not being there if it happened again. I had a right to feel that way, because it did happen again. I was standing at your bedside talking to you. I was holding your finger. Your eyes rolled back in your head and I knew, you were gone.

At 2pm, you went into cardiac arrest again. This time your heart rate was 2bpm. They called the code and I moved back as a plethora of doctors, nurses, and techs began the resuscitation process, yet again. This time, I really thought you were gone. They worked and worked and worked and worked. 2 hours, 2.5 hours, 3 hours…. Nothing. One of the nurses told the doctor that you were gone. When I heard it I literally fell. I was sitting down the whole while, but I felt as if at any moment, my life would surely end. But that doctor, that amazing man of wisdom, said “no, he is still in this, get me the Doppler” all was silent. Beep, 5 seconds, beep, 7 seconds, beep. “he has a heartbeat” “rapid deployment now”, orders from the doctor being shouted across the room. I held onto “he has a heartbeat”. But then I was confused. What was rapid deployment, what did that mean? I soon got my answer as I was ushered outside the doorway to watch, my tiny, lifeless, helpless baby; being rapidly deployed onto ECMO. Heart lung bypass, life-support. Without it he was dead. After he was stable, I was allowed in to see my black, lifeless, 5 pound baby laying there with tubes coming from his neck housing your blood. To see you completely still with one eye half open and rolled back into your head covered with red hair. That tiny quiver in your chest that we could see because your sternum had been opened, that told me you were still in there fighting. Your heart never completely stopped.

I have to honestly say, you looked you best that day. You spent 18 days on ECMO. After 6 days, your kidneys and liver failed requiring constant dialysis. You also had to go to the cath lab while on ECMO and they caused a bleed and your lungs filled with blood. The doctors took daddy, granny, and I into this tiny room, a consultation room. We knew what we were about to hear. The words we had dreaded were coming into fruition. “Your son is by far the sickest baby in the CICU. Possibly the sickest in the entire hospital. He has sustained serious damage to his lungs and kidneys. Some of which may be irreversible. Right now, he only has about a 2% chance of successfully decanulating off of ECMO. We need you, as a family, to decide if it is worth continuation of ECMO.” Wow. I was utterly speechless. I just cried, I did not want to let you go yet. I wasn’t ready. No one was.

So we did what you had taught us to do in your 6 months, we prayed. We got down on our knees and busted Heaven open looking for a miracle. We decided to let God determine your fate. For he holds the key to life and death in his hands. He held you in his hands, we were sure of it. We left you on ECMO. The next morning, June 20, your right lung opened and started getting air into it. A few days later, the left lung opened. You were now getting the ventilations into both lungs. You fought. On July 1, 2009, after 18 LONG days, you successfully came off of ECMO and dialysis. It was one of the happiest days of my life. My baby boy had survived. You suffered a stroke while on ECMO and lost your hearing, but you were alive. July and August were months of ventilators, medicine, 3 trips to the cath lab, 2 broncs, food through your g-tube, finally holding you again, physical and occupational therapy, many new medicines, new ways of doing things, and many many smiles.

Finally on Sept. 9, 2009, you were discharged after being in the hospital nearly 4 months. We flew home to Mississippi the next day. Your big sissy was already home because she had to start school. Your Daddy was so excited because he had been gone back home for a while. He flew to DC to meet us at the airport, then flew home with us.

Life after you came home was so different than before. Everything had to be sterile, no animals, you had a picc line for IV meds, a gj-tube for feedings, a feeding pump that ran continuously, a nebulizer, 7 specialists you had to see, home health nurse 3 times a week, physical, occupational, and speech therapy 3 times a week, and the limited movement you had on the left side. But boy was it sure good to have you home. I adjusted pretty quickly to having to do something every hour. Whether it be giving you a med, changing your feeding bag, giving you a breathing treatment, etc. I enjoyed every minute that I still had with you.

October 4, 2009, your Daddy left to go to Orlando, FL for training for work. Granny stayed with us to help me with you and big sissy. He called at 6pm and said he had just gotten checked in to the hotel and was going to get something to eat. It was time for your feeding bag to be changed so I did that and an hour later gave you one of your nebulizer treatments. I got big sissy in the bathtub and out and granny took her to bed. At 10pm I gave you your second breathing treatment and took a picture of you. You were holding onto the mask that delivered the medicine, I thought it was so cute. I turned on your angel care monitor (alarms if you stop breathing for 10 seconds) and climbed into bed to catch a few hours of sleep before it was time to get up again. At 1:00am, Oct. 5, your feeding pump went off indicating that you needed a new bag of milk. Granny heard it too so she got it and hooked it up. You smiled at her and she went back to bed. I was awake but not fully. I drifted back to sleep and was awakened at 1:15am by a sound I had prayed to never hear. Your monitor was going off. I immediately shot out of bed and checked on you. You weren’t breathing and no pulse. I screamed for granny and moved you to a flat surface and started CPR. I called 911 and they sent an ambulance. When the paramedics arrived, I gave them a brief history of your medical past. Then I lost it. I was not longer in control. Up until that point, I hadn’t cried, hadn’t panicked, hadn’t lost my train of thought, I simply did what I was trained to do in the hospital. After the control was taken away from me, emotions and panic set in. Granny had called everyone and Daddy was leaving the hotel to go to the airport to get a flight home. Daddy Michael and Aunt Chasity came over and Chasity stayed with your big sissy and the rest of us headed to the hospital. At 2:43am, Oct. 5, 2009, the declared you deceased. I experienced, what felt like an out-of-body peace. You see, while the paramedics were getting you ready to go, I prayed and asked God to carry me through this because holding His hand was no longer enough.

I won’t say to you that it didn’t hurt worse than anything I had ever experienced, that would be a lie. But to say to you that your passing was the worst thing that ever happened to me would also be a lie. I still, to this day, long to hold you, to touch you, to see you, to smell you. But you are no longer hurting. You will no longer spend months in a hospital. You will no longer have to endure pokes, tests, or surgeries. You are now pure and perfect. You were made whole. I cannot say to you that I don’t miss you every second of every minute of every day, but it makes it a lot easier knowing that one day I will hold you again.

You gave me the inspiration, the hope, the endurance, the motivation to strive for a better and right relationship with Christ. Because of your suffering here on earth, I will not suffer eternally. One day, I will see you again, I will hold you again, and I won’t hurt anymore. Thank you baby boy, for being all that you were to me. You have saved so many in your short 9 months than most do in a lifetime. I couldn’t begin to fathom the number of people you touched and will continue to touch through your story. I love you with all of my heart and I miss you terribly.

Love, Mom

This video is dedicated to the Angels within it and everywhere.

Just today, I read two separate comments that really made me think about how differently people are affected by Congenital Heart Disease.

On a fellow CHD blogger’s website today, I read how he feels badly about his lacking advocacy back in his college days. Later, I read on Facebook that a person felt the need to remove herself from a CHD group because it was too much to handle, emotionally. What a tangled mess of emotions from a single source!

Back in the 1980′s, I had very little experience with CHD. I went to highschool with a boy who had a pacemaker. That was it. And he didn’t call it CHD, and even bigger, he and his family avoiding talking about it at all.

When my son was born in 1992 with complex CHD, I was totally and completely blindsided.  Since those were the days before home computers and Internet (unless you were rich!), I had no support and no source of knowledge from which to draw. I didn’t even know I could go to another hospital or ask for a second opinion.

When Clint passed away at 9 weeks of age, my days of thinking about CHD were over, or so I thought. I left that children’s hospital for the last time and did my best to leave my CHD thoughts and feelings on the other side of those doors!

For the most part, I did a great job of leaving it all behind. That is, until my youngest son was born with complex CHD thirteen years later.  In 2005, I was not alone. I had the support of people and groups via the Internet. I was able to educate myself about my son’s condition.  There were people who knew about CHD that could answer my questions and supply me with information.

Yes, sometimes CHD is too much. Sometimes, when things are going well and we do not have to think about it every minute of every day, we step aside and take a break. Sometimes. And you know what? That’s okay.  Because, somewhere out there, others are picking up the CHD advocacy slack while we regroup and recharge.  

CHD awareness has come a long way over the past twenty years, but we still have a long way to go.  The important thing to remember is that once you are affected by Congenital Heart Disease, you have a moral obligation to offer your knowledge to those who come after you.

Isla-rose hider -pettit was born with chd of severe dilated cardiomyopthy and valve regurgitation . she gave me 8-1/2 wonderful months . drs were amazed she survied a day . athanks to all for ure support and work we are all tuely amazing . and thanks for letting me share her with people. Isla and freya wher born on 23rd march 09 MY BEAUTIFUL TWINS Isla-Rose At 37 weeks i was my labour was induced because my body was having  hard time holding the girls so my waters where broke with a cream  and i was in labour after a minute took very quick and i was in labour having contractions for 1-2 mins apart for 8 hours but only 3cm dilated   . Then the difficulties came in twin 1 (isla) heart rate kept dropping  and raising very quickly  so the  drs  decided i need to have a emergency c section . iIwas rushed down to theatre  where the girls where born Isla 4lb 10  and Freya 5lb11 at 8 56 and 859pm Isla was born with the cord around her neck and took longer to respond than freya , the girsl where taken off fed , dressed and cleaned by thier dad while i was in recovery ,   At around 11pm i was taken onto the ward to see my babies freya was still awake so i had a hold but isla was sleeping peacefully soo i  thought i would have cuddle in the morning, so i went off to sleep as my babies where safe , i was awoke at  248 i remmber it soo clearly isla had been taken into the special care baby unit  because she was not feeding very well so she was given a ng tube  , but seemed to be still struggling with her breathing ,so they gave her a ecg and pulse oximetry teat and  found that her heart rate was still very high , she was then moved to picu where she needed assistance with her breathing  and also isla heart was failing we where told at our hospital they did not have the care she needed so she was moved to the royal brompton heart hospital in london , where i stayed with her sister still recovering from my operation and freya needed to to have a echo to see if they may be a problem due to isla having a problem freya was born with two holes in her heart … So I was told that Isla was  taking it very badly and she might not make the journey so i said goodbye to my baby and prayed to god to keep her safe and i would be with her soon   . Its Thursday the girls are  3 day old and  i only have freya with me and rob is in london with isla who is bieng assisted  with her breathing at 80% oxygen  and  20% isla  and on a cocktail of medicines to keep her stable  and having lots of test done and any may echo where it was the dx that Isla had severe dilated cardiomyopathy which means the hear it extremely big and the lining around isla heart is very floppy and thin and her heart is very over-active and she aslo had mild valve  regurgitation which mean she  she pumps some of her blood into her left ventricle  which sends bloods too the lungs .  Which mean theres nothing u can do for it not operation can fix it only transplant and she was too small any way and  the odds are quite low off a dmc baby to survive the procedure from then  on after me and freya arrived isla  was getting better she was coming off the ventelator slowly and recovering we where told we could go  back to our local hospital   they where amazed at her she was doing very well recovering well from her heart faliure , we arrived back at our local hospital on the tuesday and isla was gaining weight slowly and on a mixture of medicines  captori frusimide l,spirolactone, dalavit, iron  , asprin ,   she came off the ventelato rat 12 days old she was fighting to say with us. soon enough we where getting ready to take her  home  all we had she was 3 weeks old when we took her her home  is was the most nervous days of my lifes she was on a ng tube and  i learnt how to do all her meds  and cpr just in case .  After another  2 weeks off bieng at home and  many echos and esgs later the ng tube was removed it was howing that she was getting better she was growing into her heart which can happen so she is  growing nicely and we are amazed and happy news too freya holes in her heart have closed,life was getting better  , she was beating the odds so the girls are growing up very nicly we are having our routine visits to the cards all is going well and we get a letter from great ormand street childrens hospital from  the speacialist there  he wants too see isla fro a check  , so we go its  october 16th and we are are told after a long day of test for isla that isla heart has got extremly bigger in leymens terms isla now 15lb her heart was 6 times bigger than ment to be she was getting weaker  and  she could  deteriorate very quickly and our option was to get her prepared for a heart transpalnt  but sll we could do is feed her up and give her beta blockers , so thats what we did  thats all we could do Isla awas a happy child lived life to the full too look at her you would have not known she was poorly she did  not look it  , or act it  she was always very very happy and lived life too  the full   she was a loving sister, daughter , granddaughter and family member On  10th of december isla was admitted in to hospital  after she became very sleepy and    had caught a cold and cough and bieng very sick , Isla had caught broncitus  and rhino virus .  She was kept in the ward for three day but she was slowly getting worse and now needed assitant with  her  breathing and kept on a constant   , but she was not holding her feed and  losing weight fast but was till very happy   aware of everything going on around her  the nurses called her smilsa  all she did was smile but yet she was soo poorly., on monday  she was taken in to intesive care where she was bieng assisted with her breathing and our card  dr came to us and made us all ware of what was going on and they  where going to try some antibiotics to try and help her with the infection  and may have to put her on full  ventilation and put her in a coma . \Isla took to the the oxygen well and was very stable so we where sent home  after being in the same clothes for 3days  and needed to tend to her sister she needed her mummy too ..  On tuesday i was back at the hospital after rounds and stayed all day isla was doing great  responding having cuddles with mummy getting better we thought back feeds , so it got to  9pm isla sleepy peacfully we went home  .. its was 9.46 i remember it to the minute i got a sick feeling something ( a mother instict ) was not right i could not find my phone   so i sent rob back to the hospital  just to check i needed him to for my  sanity freya was asleep  so i stayed home.. Rob arrived at the hospital and called me straight away  isla had not taken to the antibiotics  very well and was slowly dieng and posioning her lungs with carbon dioxide they where just about to call as rob arrived ,  i went up to the hospital with my mum and we had to make a choice it was either isla slowly poison herself or take the small chance that she will take to the coma  , so i prayed to god  that he keep her safe   and if she needed to be with him then he take her when she is not in pain and i said tto my baby to take care and if she want to be strong and stay but if  her heart is not strong  enough she needs to be with angels , so i made the  the choice to try to ventilate her and put her into the coma … Isla died at 1 46 am wedneday morning 16-12-09  after  35mins off them trying to bring her back she put up a very good fight till the end and was very happy  and i was blessed to have her , i have learned more in the  10 months  of having children  than i knew in the whole 23  years of my life .  i am  very proud of my children and thankful for everything  they have givem me  and now i am  going to tell isla story to make people aware that chd is a big  problem in this world

• Dilated cardiomyopthy only affect 2 in 10,000 babies
• Dilated cardiomyopathy (DCM): It is also known as congestive cardiomyopathy. Dilated cardiomyopathy is most notable for an enlarged heart that contracts poorly.
• Dilated cardiomyopthy can lead to sudden death  4000 babies donot live to see thier 1st birthday

many thanks for reading our story lets make people aware of our babies

Our daughter Emma was born August 2, 2006 with Hypo Plastic Left Heart.  We found out about Emma’s heart condition at our first ultrasound.  I knew something was wrong when the tech left the room sudden and brought back a Dr.  It was a long pregnancy and we prepared ourselves as much as you can prepare yourself in a situation like this.  Emma had the Norwood surgery at 11 days old and spent a total of 6 weeks in Denver Children’s Hospital.  We spent every moment we could with her (until they kicked us out during shift change!).  She came home on September 12th and we were able to spend 7 weeks with her at home.  She came home on oxygen and a NG feeding tube.  After 7 weeks of not eating on her own our Dr.’s thought it was time for a G-tube.  She had surgery on November 8th in Colorado Springs.  On November 9, 2006 Emma went to be with Jesus.  We were able to hold her in our arms as she passed.  She was the light of our life, and our first child.  From the moment we found out about Emma’s CHD we prayed for healing.  She is whole again and perfect in Heaven.  She has brought us closer as a family and closer to God.  He is the ultimate physician and healed her by bringing her home. 

6 months later we found out we were expecting again.  We went to the 20 week ultrasound and all I wanted to know was if our baby had a four-chamber heart.  The tech said “yes……..but I also see something else, I’ll be right back……..”  SERIOUSLY, Again… is the thought I had.  The Dr.’s came in and confirmed they saw something wrong with the our little boy’s heart.  Our son Thaddeus was born on January 21, 2008 with Coarctation of the Aorta and a VSD.  The day after he was born he was transferred to Children’s Hospital in Denver.  He had open heart surgery at 3 days old.  He spent 2 1/2 weeks in the hospital and came home on oxygen but was eating on his own.  When he was 3 months old his echo wasn’t the greatest.  His coarc was narrowing again and he needed to go back to Denver to have a balloon catheter.  This was definitely a scary time since our daughter Emma passed away at 3 months old.  His catheter went great and we were released after a few days.  Thad is now 2 years old and is doing GREAT!  You would never know anything was wrong with him until you look at his “zipper” on his chest.  It is a constant reminder of what he has been through and how strong he is.  Our Cardiologist is still watching his Mitral Valve and thinks sometime throughout his life he will need his Mitral Valve replaced.  It could be next year or 50 years down the road.  (I pray for the 50 years or never!) He brings such joy to our lives and makes us appreciate what we have.  We know what is important in life and feel honored that we were chosen to be parents to two wonderful miracle babies. 

Emma will always be our first born who taught us how to love someone so much.  She makes me want to be a better person and to spread the word about CHD and how important it is to find a cure.  Loosing a child is the hardest thing we will ever go through but it has also made us stronger.  We know we will see her again and spend eternity with her.  Thad knows who his sister is and whenever he sees her pictures he says “Emma!”  When we ask him where Emma is, he looks towards Heaven and smiles.  We love you Emma and Thad, you are both our miracle babies!!!

Mindy Younger

blog: keepingupwiththeyoungers.blogspot.com

I was on vacation visiting family in New Hampshire when I fell ill. I called my boyfriend, Timothy to complain of course. He told me to take it easy it was probably nothing and if I didn’t feel any better by the next day to head home. I was so sick, I swore I had the flew. I drove the 6 hour drive home to Maine feeling like I was hit by a truck wondering what was wrong with me. Never once was I prepared for what I was going to find out. When I got home Timothy was prepared with a pregnancy test. I couldn’t believe he actually thought I was pregnant, being pregnant was the last thing that crossed my mind. We had tried for 1 year to get pregnant with no success. We decided to put it off, it just wasn’t our time. I enrolled back in classes to further my education we decided to start looking for a house, he was finishing up his apprentice program to get his lobstering licence and his own boat. Well when we least expected it to happen…it happened! PREGNANT, the most amazing feeling rolled through me as I read that pregnancy test. We cried, laughed and called our parents. We were so excited. We had waited so long for this, finally it was here. I was excited to share my experience with my 2 sisters who were also pregnant. My older sister and I were due days apart and my younger sister was due in February. I thought pregnancy was fun and exciting, my outlooked soon changed.

I was sick every day. Morning..Noon…Night…it never went away. I handled it though. We went to our first ultrasound appointment September 29.  The most amazing thing in the world. We were only 6 weeks and 3 days but, we saw a beautiful heartbeat and our excitement grew. Over the next few weeks my sickness didn’t go away and I started bleeding. I was very worried we ended up in the hospital at 12 weeks. The told us they could not find a heart beat. They sent us to another hospital for a D&C. The ultrasound prior to the procedure found a strong and healthy heartbeat. We almost lost our baby to a stupid mistake. WE returned home relieved that our baby was safe. My bleeding faded away but I had these feeling that wouldn’t go away. I prayed to the Lord to guide me in a god direction, being a strong believer in my faith I rely on Jesus to help guide me. I had a horrific dream that night, something was wrong. I called my doctors office the next morning where luckily my friend works and  I told her I needed to get in to have an ultrasound, I needed peace of mind. 3 weeks later a 15 weeks and 6 days, December 18, 2008 I got in. THe most beautiful thing I had ever seen. My daughter, bouncing around, kicking, punching, smiling. My breathe was taken away, it was as if all my worries went away. Not for long, they told me to go to the hospital my doctor needed to talk to me. My heart was pounding and I thought this can’t be happening to me what is wrong with my baby…Gastroschisis…what? My doctor told me your daughter has a condition known as Gastroschisis in other words her intestines/bowel is on the outside of her body. Her abdomen must of tornmost likely between the 12-14 weeks of your pregnancy. There is a 90% survival rate. I thought things couldn’t get worse. We were sent to a specialist the next day December 19. I noticed the e focusing on her heart. I had ben through enough I ask them is there something I should know? Being professional she replied just routine. When the specialist came in and said to us, “We believe your daughter has something called Hypoplastic Left Heart Syndrome.” WHAT? I have never heard so many intimidating words in one sentence. Congenital Heart Defect, Hypoplastic Left Heart Syndrome, Gastroschisis, Tachycardia, left ventrical, aorta…So many things I had to take in. We were told babies with HLHS rarely survive about 25% will make it through the first surgery. Our baby had 2 very serious conditions. THe odds of her making it to term were very low. They had no faith in our baby. They gave us 3 options, 1. Compassionate Care (take home baby and let her pass.) 2. Terminate Pregnacy ( Stop my baby’s heartbeat.) 3. Surgery (3 stage surgery, Norwood, Glenn and Fontan.) It never once crossed our mind to terminate or to bring our baby home to die. We were going to show them how much a fighter our girl is going to be.

Our care was transferred to Portland Maine. 3 1/2 hours from the island where we live. Anything for our girl. We met Doctor Adrian Moran. He was an amazing cardiologist. His team and himself never sugr coated anything. We trusted them to take care of us. The followed us very closely. Our babies heart had a bad leaky valve and that was causing problems. THey thought for sure even though they were fighting for her she may not make it to term, the word “stillborn” haunted me. I was determined to get her to term…alive. My worst fears were thought to come true when I was 28 weeks. I hadn’t felt the baby move all day and we called our first OB doctor, she told us to come in. We ended up in the Labor & Delivery Department not being able to find a heartbeat. Our doctor was preparing to induce us. They believed we lost her, “stillborn” haunted me again. After crying and disbelief, they rolled in a warmer and blankets a cute little hat to put o her. Timothy asked them, pleaded with them to check, he didn’t believe them. Our daughter more difficult than ever was still alive. After an hour of searching they found her heartbeat. Our baby is very stubborn!

Uneventful weeks passed and our delivery date arrived! The day after Mothers Day, May 11, 2009 we were induced at 9:00 pm. With my family and most amazing father a daughter could ask for on board, 18 hour and 9 minutes made the past 9 months look like a breeze. Alivia Grace Parker was born at 4:09pm weighing 2300kg or 5.5 lbs and 18 1/2 inches longs. Her daddy cut her cord, they cleaned her up wrapped her bowel, and handed her to her mommy. I held my baby for what seemed like a lifetime but, it was a short minute long. She was beautiful. We told her how much we loved her and how she was a miracle. We cried and she stared at us with her innocent and beautiful eyes. She was worth it all. Then as are time was cut so short they took her off for her belly surgery.

Alivia right after she was born.

We were not able to se her again until 1:00 am the next morning. Of course as a mother and a worried mother I stayed up all night untill I was able to see her. Timothy and I went to see her in the NICU. Her belly looked great they got all her intestines back in, in one surgery which was a plus. Our worries weren’t any where never cleared. Our next step…Open Heart Surgery. I couldn’t fathom my newborn going through open heart surgery. I dreaded that day. I stayed with her all night in the NICU. Stable, was my new favorite word. Then May 15 came. Our big day. Our 3 day old daughter was going in for her first of 3 surgeries. We stayed with her all night and then at 9:00am Dr. Quinn came to get our little girl. We said our “goodbyes” just in case. We told Alivia how much we loved her and how she was so strong. We told her how special she was to us. I fell to the floor as they rolled our helpless, broken baby away from us. I felt useless, I am her mommy and I cannot even help her, isn’t that my job?  I spent the day starring at my phone waiting for phone calls. Finally 8 hours later we got the ok, she was heading down to SCU II, Pediatric Intensive Care Unit. We were warned that she wouldn’t look like our baby, and would be swollen. I didn’t care, she was alive and doing well. She was a survivor! I was so happy to be back with her.

With her chest still opened they worried about infection. They attempted to close her chest May 17. She did not handle it well. We almost lost our little girl. I stayed by her side the entire time while they performed CPR and gave her all kinds of medicine. I remember them telling me, I don’t know why she is still here, with stats she had she should be gone. You have fighter in there! I know I do! She is a hero to me. I cannot imagine what she is going through. I would have given anything to change places! Finally  On the May 21 we successfully had a closed chest. No out of the wood works though. The doctors discovered Alivia was putting out alot of fluid. They couldn’t get her to stop. Come to find out Alivia joined another statistic. 3-5% of the WORLD population have bi-lateral lymph-nodes. ALivia was one of them. She had to have a thoracotomy to cauterize her extra lymph-nodes that were creating more drainage. With 2 Thoracotomies the drainage seemed to slow down and after a few days it went away. We were really starting to improve!

As most CHD families know life with a heart defect is a roller coaster. Our uphill started going down. Aliviawas unable to come off the ventilator because of lung pressure. They had successfully extubated Alivia for 5hours and 13minutes at 3 weeks old. She needed to be intubated. The following week they had been pressuring her to get off the vent, I was not happy. They decided to bring her to the CathLab. My baby came back to me looking worse than she did after her Norwood. The nurse helping with her cath told us that they “forgot” to turn of one of her fluid IV’sand gave her 3x the amount she was suppose to get. Now overflowing with fluid, stressed out and 100% ventilator dependable her body went into shock.  June 17, 2009 after 37 days of fighting my daughters body had enough. With her father and I by her side 100% of the time we said our final I love you’s. Alivia laid in her daddy’s arms for the first time, as Jesus reached out for her. Family and friends came to visit. We stayed all day and night with her. We stared at her and traced her face with our fingers. We bathed her and dressed her in a beautiful outfit. I combed her beautiful long hair. I kept telling how much I love herand forever will. We got hand and feet impressions. Nurses and doctors came by, our Alivia made a big impression. I miss her more and more everyday.I love you Alivia Grace.

All my life i grew up knowing i had a CHD, of course when i was little i was told “you have a boo boo on your heart so you need to be careful”. As i grew older i learned more about my CHD, Congenital Peripheral Pulmonary Artery Branch Stenosis and Hypoplasia of the Left Lung. They didnt find my condition until i was about 2, and i had my open heart surgery before i was three. for a while there were Catherizations yearly to enlarge the stent they had placed in my artery, then it changed to every other year, and then gradually moved to as needed. Amazingly i grew up pretty normal, i did all i could and even had took all my gym classes until highschool, i never wanted to be the one left out of all the fun. There were those times where i would get tired more quickly, but i rarely let it interfer. throughout highschool i did a few sports; running, fencing, lifted weights for a bit, and while its not considered a sport when your doing it at home i wrestled with my guy friends quite often and quite roughly. I liked to ignore the fact i have a Congenital Heart Defect. I Learned quickly in the past 4 years that i will not be able to ignore it forever. After one first trimester miscarriage and two third trimester still births i was finally gifted with my sweet blessing Micah just in time for Valentines day.

My pregnany with Micah was as normal as possible for me. Due to my CHD they watched my blood pressures very closely and did a few echos on my heart and lungs to make sure i wasnt loosing blood flow to my lungs. My obstetrician wasnt worried that my child could have inherited a CHD from me because there is no trace of it running in my family so there were never any extra tests done to be sure about that. Beginning around my 6th month my blood pressure would spike occasionally, and took a slow and steady rise until my 8th month. They found a month before my due date that i had Pre-eclampsia, but it was a very mild case so there was no rush to do anything. Two weeks before my due date of feb. 14th i got into a minor car accident, thankfully everything was fine but the dr decided it was the time to induce since he did not want to wait until something did go wrong.

I was induced Sunday Feb. 8th at 8pm, contractions started immediately and things went smooth through out the night. the next morning when i was checked they found that i was dialating, however because he had his hands in his face he wasnt coming down properly and would need to be delievered by C-section. Micah Immanuel was born Feb 9th at 9:05 am at 5lbs 9 oz and 19 and a quarter inches long. He was absolutely beautiful, with no signs of his CHD. the first 24 hours went smooth except he refused to eat. All the nurses told me he was too comfortable to latch on. All of his first day checkups were perfect until they detected his little heart murmer. For the first few hours they tried to tell us this was normal for a newborn, but finally my Obstetrician talked to the Pediactric nurses and made it very clear that he needed to be checked.

Less than 24 hours after he was born Micah was transfered to Childrens Hospital of Wisconsin by Ambulance, his father rode with him and i after being released practially flew there with my mom. The first night there was pure hell; we were not allowed to see him at first, and when we finally were allowed in the room was so packed i couldnt even see him. After some testing we were told that he had no Pulmonary artery at all and that they only thing keeping him alive was a small artery that normally closes shortly after birth. He was placed on drugs to prevent this from happening so they could test furture. Not 30 minutes after he was placed on the drugs he stoped breathing, two nurses started CPR while i stood frozen in the corner. After about 10 seconds a doctor came in and gave them hell, after stopping CPR he picked micah up and rubbed his back for a few seconds and he started breathing again, the doctor ordered more drugs to prevent it from happening again. After watching my son turn blue and hearing all the alarms i had hoped that the rest would go better but it did not. Micahs father and i found out later that a intern had told our parents that Micah had no pulmonary artery and had no chance of survival and we should just take him home and make him comfortable. The rage that ran through me when i found that out could have done more damage than a nuclear bomb. After a talk with the head of the department she wasnt even allowed in our sons pod again. Finally, as the night started to creep into day around 4 am, they were done poking and proding Micah. By that time i wasnt sure if he could take anymore, and i knew that i would not be able to handle much more after going nearly 15 hours with around type of pain medication and walking around a hospital after a csection.

Two days later the doctors finally did a catherization to see what really was going on. It turned out in fact that he did have a pulmoary artery, however it was not working correctly. Due to the fact his body had made up for this by creating 9 extra arteries they were able to take him off almost all of the drugs. His oxygen levels were in the high 80′s he was eating well by bottle, they just wanted to wait a few days and watch and then he could go home. we spent two weeks in limbo being told “tomorrow, tomorrow you can take him home.” however it did not work that way. One day he was too pale, and then they saw how pale i was and said it was too late to discharge, any little reason they could find. We were eager to go home however didnt want to rush it. We were finally able to take him home on Feb. 27th. Despite our eager to go home we were terrified knowing that he would need open heart surgery to repair his problems, and the talk of doing it as soon as three months scared us more. The doctors reassured us that we would be fine until then.

A month went by smoothly; doctors appointments were weekly, then bi-weekly with both the cardiologist and pediatrician. By the end of march i thought to myself “its going very well, maybe i can breathe now”. It was the very next day when he had his card. appoint that i was proved wrong. The nurse didnt believe it at first when his oxygen saturation levels were reading mid 50′s to low 60′s. He was not blue, he was not tired, he was fine. after three pulse oximeters, 2 nurses, and three cardiologists they admitted him back into the hospital and began talking about what to do. After testing it was decided that he was fine, just somehow because dehydrated and sick, his platelets how somehow gotten lower also but i was assured this was normal around this age that the body kills them off and regenerates more. giving him fluids a day or so observation  his levels were back up and we were sent home on oxygen to prevent his levels from dropping again. Doctors appointments went back to weekly, and then gradually were weened to bi-weekly. He was a unusually happy baby, rarely cried but did have the occasional fit for no apparent reason. Our days were always busy checking oxygen levels, making sure i had enough oxygen tanks in the house, playing, sleeping. He was most definately a momma’s boy, anyone else held him and he would not let me out of his sights and if i left the room he’d complain at first but it always turned quickly into a screaming fit if i didnt return. We patiently waited to hear what the date of his surgery would be, i had almost calmed a few of my fears about it when the call came in, they had decided on May 20th. Pre-op was the day before, and i was nervous i had no doubt Micah knew what was going to happen. It obviously wasnt ment to be because he had almost passed his pre-op when i asked about the white stuff on his lip that he pediatrician said was nothing, it turned out to be thrush and they cancelled the surgery immediately not wanting to take any risk. It took three different types of medications and almost three weeks to get rid of it. Surgery was rescheduled for july 3rd and we did the same as before, laugh played learned and grew until july 2nd and then we went in for the preop. This time we didnt even make it into the exam room before we found out we were being rescheduled for July 6th, it wasnt a big change but it gave me a few more days and the 4th of july with him.

The night before the surgery was long and hard, Micah wasnt allowed anything but the pedialyte that he refused to eat, and after tasting it i dont blame him. I got up around 4:30 that morning to begin packing our things up while he slept, and waited until the last second to disturb him and put him in his car seat. He quickly went back to sleep. I felt sick that entire morning, it took every ounce in my body to get him ready without crying or throwing up. its amazing how vividly i can remember that morning. His father met us there, and was actually there not only on time but before us for once. Micah talked his cute babytalk to the nurses in the elevator, being the little ladies man he was. Then fussed and complained the whole time we waited in the waiting room. By the time i finally got him to sleep they were almost ready. When they asked me to had him over everything in my heart and soul was screaming “Dont do it! This will be the last time you’ll hold him like this! just hold onto him and tell him how much you love him!” after about 10 minutes of coaxing i finally handed him to his father so that the nurse would take him. I gave him one last kiss, watched them go past the doors and then ran out the room and down the hall.

Sadly i was right, that was the last time i held him in my arms while he wasnt hooked up to 50 million things.

His OHS took 23 hours. origionally they had planned 12 at the VERY most if something went wrong. They were wrong.  During the surgery they appempted to sew the 9 extra tiny arteries together to create more blood flow to his lungs, however his arteries had not grown enough to be successful in doing this. They had trouble keeping his 02 levels up, and it took about 6 hours to just control the bleeding, and ended up having to put him on a ECMO machine because his heart was in shock. He finally got into his room in the CICU at 6:30 am. They let us come back before they were ready because it had been so long, and honestly i think they were tired of us harrasing them. My baby did not look like my baby, he was swollen at least 3 extras pounds on him, had tubes coming out everywhere with i.v.s in almost every place they could managed, and he was surrounded by HUGE machines making lots of louds noises. I honestly cannot remember if i even got to touch him. we were given a sleep room so that one of us could sleep without all the noises and the commotion while they finished setting things up, i walked into the room and collapsed.

His heart recovered after just a few days and they opened the shunt, however his lungs were not getting better. When they opened the shunt his heart rate and blood pressure improved dramatically. they tried to ween him from ecmo however did not succeed. At first chest xrays were showing alot of fluid around the lungs and they thought that was the problem, then they thought the problems was too much packing so they removed as much as they safely could. They found after a bit that his Left lung was collapsed so they tried giving him serfactin which is a natural chemical in your lungs that inflate your airsacs. It did not work so they went in and did a broncial. Both branches of the airway to his lungs were compressed but they found uping the air pressure thourgh his vent helped that. It also helped to inflate his left lung and overinflate his right. So they tried putting him on helium, they were able to do this because he was still on the ecmo and it was supplying his oxygen for him. That along with opening his chest some more helped tremendously. With his lung compassity improved 50% they decided to try to ween him off of the ecmo. The origional plan was to take him to the OR and do it there while his surgeon was removing packing and making more room for his lungs, that way if something happened they had more capabilitys and she could also control the flow through his shunt. There was a miscommunicate and he was weened in his room without the surgeon, there was no damage done by thankfully. they were able to get him from 500 to 250 ( a dramatic drop) and his sat’s were steady from the mid 60′s to the mid 70′s. well they turned him back up because it was decided he would go down for a catherization to FINALLY look and see how the arteries they had sewn together were working and how much blood flow they were getting and to try and remove the packing.

Things went horribly wrong. They took a few pictures and removed the packing, knowing the bleeding had never COMPLETELY stopped but they thought they had it controlled. Well in removing the packing they stirred up more bleeding, and also found a hold where his shunt and arteries meet. Origionally they had wanted to do some ballooning of his arteries and possibly some stenting however micah lost was too much blood way to quickly. He recieved 6 adult sized blood transfusions and still almost did not make it out of the cath lab. when he came back his arms and legs were black all the way up. This is when they found out that his arteries were for sure too small to keep him alive. The next day they took him down to the operating room to try and repair a bit of the shunt and see if there was anything else they would do for the arteries, they were successful in improving the shunt but there was nothing they could do about his arteries. Due to the fact that he was living well on such low oxygen levels they thought there was a off chance he could survive for a while despite this, and tried again to ween him from the ECMO and see how well he does. They were able to get him alot lower then they had expected so they decided whats another day or so for him to rest and then try again. The second time they did this things did not go as well and it was decided that we had two options. Removing him from life support, or hoping for the small chance of a heart and lung transplant. We took our time talking about it with the doctors, we were in no rush to say yes to either. After long hard consideration, many tears from not only us but the doctors and nurses, we decided to take him off of life support. The chance of him surviving being transported to a transplant hospital was incredibly small, let alone finding a heart and lungs, and then hoping that they dont fail on him was to large. We wanted to be there if something were to happen.

The night of July 23rd, 2009 things were oddly quite in the Cardiac intensive care unit. It were as if the whole world place knew what was going to happen and the walls blocked out the rest of the world. They gave him as many drugs as they could to make him comfortable so that i could hold him one last time before it was done. He didnt feel like my son, it didnt feel like reality, i was begging inside for it to be a nightmare but on the outside i was cold quiet and closed off. i couldnt bring myself to say anything to anyone. His father held him when they turned off the machines, and i just stared as Micah quickly turned blue. Im not sure why but i felt nothing at the moment, i held him after he passed as if he were just some doll from when i were a little child. After we handed him over i quietly packed my things and simply walked out as if i had never had a child. His Cardiologist found me in the hall and couldnt control her tears.

I wonder now how she could show so much emotion for a little boy she saw once or twice a week when i showed nothing for a angel i spent every moment of 5 months with. Now that i look back my family must of thought i lost my mind; i showed no emotion, talked about it as if it were someone elses life like i wasnt attatched to him. The funeral came and went, it took me weeks to finally break down and cry and still few saw it. i stare at his pictures wanting to hear him laugh again, wishing i could see his smile and hear him giggle just once more. Sometimes i can still hear his sweet babytalk trying to mimic mommas singing in my dreams. I wonder what itd be like now if he were here. Its been 5 months and things are now catching up to me, the delayed reaction to a hard loss isnt easy to deal with. I sleep intermittedly when im lucky enough to fall asleep at a decent time, wake up from nightmares, or just stare at the ceiling all night. Ive felt more in the last year then i can ever remember in my life. Im thankful i had the time i did with him but still feel like it wasnt enough, but i know he’ll always be with me in my heart.

I will miss and love you until the day i join you in heaven, i know you’ll never leave me alone and im still holding you in my heart.
Micah Immanuel Herrin 02/09/09-07/23/09

It was just after Thanksgiving of 2008 when I told my husband that I was feeling a little sick. I thought there is no way I’m pregnant, I’ve been on birth control. But a few days later, the pregnancy test told us something different! We were both surprised, but also VERY excited. We both wanted children but we didn’t think we were ready. I guess Hailey told us that it was time, and we were ready.

Then on March 4th 2009 we were so excited because we were going to find out if we get to pick out blue or pink clothes. We found out we were having a little girl, but at the same time the UT was taking a very long time with the ultra sound focusing on the heart. She later left the room and then the Doctor came in to tell us what first time parents never want to hear. “There’s something wrong with the baby’s heart” I don’t remember much after that through all the tears. But we were scheduled the next day to get a Echo done at Doernbecher Children’s Hospital in Portland, OR.

The night before the Echo, we were hoping the doctor was wrong, and that she just couldn’t see the heart very well. We were hoping at this next appointment they would say “Oh she made a mistake, there’s nothing wrong”. But instead they said “Your baby has Hypoplastic Left Heart Syndrome” We were devastated.  Then they gave us three options. The first one was to terminate the pregnancy (no way in hell!!) the next one was to give her “compassionate care” (basically take her home and let her pass away) again, no way!! And the third was a series of open heart surgeries. We went from blue or pink, to live or die. Of course we chose the open heart surgeries.  We wanted to give Hailey every chance at life that we could. We are not the ones to determine whether she lives or dies.

After that day, I spent most of my free time researching HLHS and other families going through the same thing. I met a lot of wonderful families and many survivors from HLHS. So we had lots of hope for Hailey.

Then on July 17th we had our scheduled induction date and after 30 hours of labor, Hailey arrived via C-Section at 4:09 pm on July 18th 2009. She was 7 pounds 12 oz and 20.5 inches long. She was BEAUTIFUL!

The sad thing was I did not get to hold her. They rushed her away to start running tests and placing IVs. I finally got to see her about 2 hours later. I still didn’t get to hold her. I could only look at her and rub her little hand. The next 2 days were just the same. No holding, just standing over her little bed and rubbing her hands and letting her grab onto our fingers. On the morning before her surgery on the 21st, we finally got to hold her! That was one of my happiest moments since arriving at the hospital. Then they came in to wheel her away to her first open heart surgery at just 3 days old.

Her surgery was very long! 14 hours to be exact. The outcome was not good. Besides the HLHS she also had a very leaky tricuspid valve and coronary fistulas (where the veins leading from her heart to her lungs were too small). She came out of surgery on a machine called ECMO. It’s basically doing all of the work her heart would do, because her heart was not beating on it’s own. The next day she went to the cath lab where they inserted 3 different stints into these veins that were too small. Then 6 days later, she was able to come off of the ECMO machine! We were so happy!

But she ended up spending 3 weeks on the ventilator because she was so sick. After those 3 weeks they took out her breathing tube but she only lasted a day without it. After 3 more failed attempts it was determined that Hailey needed to go back to have another open heart surgery to fix her leaking tricuspid valve (the reason she could not get off of the vent) So on August 21st she had her second open heart surgery. This one went much better! No ECMO and only a week on the ventilator. She came off no problem. Then about a week later she had an infection in her gallbladder so she needed to be re intubated because of the infection she was having a hard time breathing. This time she was only intubated for 3 days. She ended up getting a drain in her gallbladder which had to be left in for 6 weeks. 

But this fix to her valve wasn’t good enough. It needed to be replaced. She remained on an IV of Milrinone to keep her heart beating strong while she waited to grow big enough to have that valve replaced. During this time, we really got to know Hailey and her personality. She absolutely hated mornings (just like her mom) and she loved to be held and get all of the attention from anyone who was in her room. If you didn’t pay attention to her, she would let you know she was there! She also loved her little mobile, her favorite piece was a little blue horse. We had many fun days with her as we played with her and held her as we fell asleep.

Finally on November 24th Hailey was big enough to have her tricuspid valve replaced and also have her next stage in the HLHS series, the Glenn. It was another long surgery but she came out strong! No ECMO again. She had a beautiful color and she even opened her eyes to peek at us.

Three days after her surgery, her chest was closed. That’s when all the problems started. The night she got her chest closed is the first time she crashed. Her blood pressure just took a nose dive. They gave her CPR and got her back in only a minute or 2. But then it happened again 2 days later. Again they got her back, but it took a little bit longer. So they decide she needs to go to the cath lab to find out what’s happening.

December 2nd we give Hailey a kiss and tell her how much we love her as they wheel her down to the cath lab. Just a simple procedure right? Well just after they insert the dye they see the problem, but then she crashes and they can’t fix the problem while giving CPR. They worked on her for almost an hour. There was nothing else they could do, she was gone. A stint had come loose and was blocking the blood flow to her lungs. I wish they would have gone to cath lab a lot sooner. But there is nothing we can do about that now.

My husband and I waited in her room as they bring her back in, still doing CPR to keep her heart going until they can put her in my arms. They stopped CPR and placed her in my arms as her heart took it’s last beat. I held her for hours telling her how much I loved her and how sorry I was that this is how the end had to happen. Then my husband also held her for hours as we just cried until we couldn’t cry any longer. We then put her back on her bed and the nurses took out all her lines and IVs. Then we gave her a bath and put her in her last outfit. We said our goodbyes and left that hospital for the last time, without our baby girl. It wasn’t supposed to be this way. She was supposed to come home for Christmas. I guess she is always here with us now, only in spirit.

I love you so much Hailey. I would give anything to have you back. But I know you aren’t in anymore pain. No more doctor visits, no more poking and prodding. And no more surgeries.   Rest in peace my Angel. I can’t wait until I get to hold you in my arms again.

Love,

Mommy

A Father

A father by my own definition is one that is supposed to journey to the ends of the earth, putting everything aside for his family. He is to provide and care for his wife and equally help to raise and teach good values to their children from the experiences in his own live. A father should not ever quit his family or make them want to quit him. A father does not have to be physically strong, but mentally savvy to circumvent problems that arise so that the family is safe in love and safe in environment at all times, that every member of that family knows, “if we run into a scary situation Dad will take care of it.”

A Son

My son was conceived in January of 2009. He’s my 1st child, a boy. The feeling of a man having a son is one of extreme joy and a unique feeling I can’t quite describe, but it feels so good. I can remember letting my mind run every chance I got. Would he be into camping and fishing, because I’d really like to do those things with him, doing 4 wheeler rides, taking him to the museums to explain to him about various different types so that I can see what kinds of things he looks like he’s interested in. Going over the game plan in my head that I’d never force my child to do something, but to explore with him enough things that he’ll do things he really likes. I visioned talks I would have with him about different aspects of life, like bullies — now not to be one and how to respond to one. Those types of thoughts had frequently found there way to my day dreams.

About 17 weeks later, during the 20 week ultrasound — first they do a few tests for down syndrome and a few other defects, then they check out all the babies organs, and then tell you the sex of your babby and you go home. Talking all the way about what are we going to get him for Christmas, for clothes.

That’s not how it went. That’s how it should have went. Instead while performing an ultrasound the ultrasound tech was taking quite a bit of time on the babies heart. “Something’s wrong” she said with a 5 minute intermission to her next statement, while my wife starts letting out these awful sounds like i’ve never heard. “There looks to be something wrong with the babies heart” she says.  “I get that part”, I said. “Now what do we do?” “We have to get you in Children’s Hospital for an Echo Cardiogram”. The 5 day off appointment left us in a situation that some people can crack in — Immediately I took to the internet and found the Mother Controlled Baby Center Board “Babies and Children with Heart Problems” — This group of women contributed to the transformation of my entire life, immediately upon posting I had tons of feedback from people who are going through the diagnosis stage, people near delivery of a CHD baby and people who have both CHD newborns and CHD older kids. By the way the mother’s talked and how I saw the kids being happy, It gave me a great sense of “no matter what i’m fighting for my little boy till the end”. So I asked alot of questions on BBC, twice as many to my health care providers and became my own mini-cardiologist. And what we learned from the ECHO was Aiden had a pretty complex Congenital Heart Defect.

Unbalanced Atrioventricular Septal Defect, Pulmonary Atresia, Situs Inversus, SVT

Instead of separate mitral and tricuspid valve inlets (heart valves), a common Atrioventricular (AVV) valve has a single inlet into the ventricular chambers. So where we have 2 heart valves working, Aiden had one, and that valve had a mild leak. Now the mild leak wasn’t a concern for Children’s, that would most likely heal up on it’s own. With the pulmonary atresia, no pulmonary valve (which let blood flow from the pulmonary artery and onto the lungs didn’t exist). To make things worse, his Pulmonary Arteries were split off in different locations instead of being close together. The degree of his Unbalancedness was severely unbalanced with a single dominant ventricle and a second (almost non-existent and useless ventricle), resulting in a single ventricle physiology. The situs inversus w/ heart & lungs in correct locations meant all the other organs were on mirror sides of his body, possibly causing kinking in his intenstines and either 0 or 2+ spleens. The other big kicker, given an AVSD, down syndrome was in the 70% probable area.

Catching my breath

Emotionally I can’t begin to tell you what hearing his specific defect is and all that can happen does to the father of that Child. You can feel your heart breaking, stronger than any other emotion you can imagine. Immediately your thoughts are “Will my child live?” — Immediately they tell you to talk to a genetic counselor and start seeing a high risk OBGYN.

Genetic Counselor with a side of Termination Happiness

I had a long talk with Tracy’s High Risk OB, Dr. Henry Galan, MD who is Co-Director of the Colorado High Risk Maternity and Newborn Program, Section Head of Obstetrics, the Director of the Maternal-Fetal Medicine Fellowship and associate professor of obstetrics and gynecology. I said, in no way, shape or form are terminating our child, so make that known to everyone. Ok. Perfect.

Now we meet with the Genetic Counselor who’s taking tree notes from Tracy’s Brothers Ex-Girlfriend’s New Husband’s children… Seriously, that has nothing to do with our family, genetically. Kathleen DiGuilio, MS, CGC (Prenatal Diagnosis, Univ Colo) then proceeded to tell us that Aiden’s Diagnosis is so severe he has almost no chance and that most parents in our situation terminate their children. We were instructed to hurry because the last termination point was 1 week away. We simply stood up and walked out of the room, my son doesn’t need an amniocentesis to survive — and your telling me the 1% chance will never happen, lady my son has a CHD, I’m not taking chances. Next.

No More

We declined any type of invasive testing as it wasn’t changing our minds anyway, and we waiting until the 25th week to see anyone so people stopped talking to us about termination. Once that was cleaned up we started going back to Children’s Hospital: Denver for our echo cardiograms.  Needless to say, the remainder of Tracy’s pregnancy was a difficult one, many tears, what if’s all while arming ourselves with every piece of possible information. I can tell you, nothing will ever prepare you enough, but it IS good to prepare.

Aiden’s Birth

During a visit to The University of Colorado for a non-stress test, Tracy’s amniotic fluid was very low (Red Flag #1), taking QUITE a long amount of time, we finally made it up to the birthing suite b/c this was going down now. OK so I thought, here comes our smooth plan. (I didn’t notice it went right out the window). Tracy was having a very difficult time being induced (Red Flag #2) at one point during the induction Tracy had gotten a fever, about 30 hours into labor (Red Flag #3, mother fever) (Red Flag #4 30 hour labor on a heart baby with low amniotic fluid), Aiden then went into an SVT episode where his heart rate exceeded 200bpm (Red Flag #5 and stop) My son, who is a baby with a Congenital Heart Defect is in an SVT episode with low amniotic fluid and a stalled pregnancy, the father and mother are requesting a C-section. Instead of letting me talk to someone on the floor, the almost doctor that was on call said “no” — More problems occurred up and down, to the point where a training doctor tried turning the baby inside Tracy without the use of an ultrasound machine, had she used that machine they would have saw that Aiden was in the correct position and their turning procedure caused markings on the baby as well as traumatic stress for my wife. At 50 hours of labor, my wife exhausted, weakened and fluctuating heart rates on the baby while they still refused our C section, one of the “almost doctors” came in (None of the Doctors we had met with for months were anywhere around during any of this. Except for 1 time for a brief moment meeting. So the “Almost Doctor” came in and said it’s time to push, after looking at the numbers. PUSH. 3 more of those and Aiden was born into this world, with an umbilical cord wrapped around his neck. After a few minutes of one of the worst times of my life, I watched my son lifeless until the NICU team came in. As far as I’m concerned, University of Colorado / Dr. Henry Galan’s practicing “almost”-doctors put my wife and my child at risk giving both of their conditions to deny us a C-section after 5 red flags were given to sustain a C-section decision. We believe from right before and right after ECHOs that his mitral valve had begun to leak heavily as the result of the 52 labor.

Days with Aiden

We spent as much time as we possibly could with Aiden, having him lay on our bodies (kangaroo care), we talked with him, held him, changed his diapers, he got to see us and we got to see him. After a review by the Medical Teams at Children’s Hospital: Denver we were given 3 options due to the severity of Aiden’s condition. Take him home for hospice care, and I don’t know if any of you could stomach taking your child home to watch him choke on air and slowly die because the Prostaglandins that keep his ductus open isn’t there anymore. The other option was a full heart transplant and last surgery. It was Denver’s opinion our best shot is a transplant. Which we followed up with and Denver denied. (Make a whole lot of sense to anyone else?) So the only other option was surgery. I had contacted Dr. del Nido at Children’s Boston to review Aiden’s ECHO’s — the results they saw where the same. Still I was going to get on a plane and head to Boston, but the night of my decision Aiden had an SVT episode and got really sick. With his myriad of issues, cross country transportation was a huge risk. With Dr. Cambell who has 28 years of experience we stuck with Denver.

Once the decision was made we spent as much time as we could with Aiden, having him watch football games (ok they played in the background while we just oogled over him) – It was very hard because we had to be careful picking him up all the time as to not start up his SVT. We had to reserve ourselves those last few days before surgery for his benefit. But he still heard us, felt our touch and saw us oogling over him.

Then the day came, the surgery team came and Aiden left with them.

Post-OP

Aiden had the completed surgery, where they repaired the leak the best they could, his PA’s and putting a shunt in. Aiden went into cardiac arrest 5 hours after surgery and couldn’t be revived. After nearly 40 minutes I gave the go ahead for the team to stop. They were beating on my son, and shocking him, and stabbing him with needles all while his scar from his operation bled. The beautiful color my son had was at this point white. My son had been gone for a while, that was clear from the no results. It was time they gave his body rest.  I can’t begin to tell you about the rest of that night. No matter how much effort I put in, I could not save my first son and had to watch him become an Angel of Heaven.

Now

Today (Friday 12/18/09) is 8 weeks after my son’s death, he died October 23rd 2009. I can’t say that I don’t experience that roller coaster of emotions, it’s very hard. All I have are photos that were taken professionally by “Now I Lay Me Down To Sleep” during one of his very good days (130+) to look at, his room of things I bought for him, and a makeshift memorial to him at my home. I don’t want him out in the cold without his family. I just want to have my son back in my arms, to say hey buddy, daddy did it, we got you fixed, your gonna be ok. But I only can talk to his spirit. I can’t hear the giggles, I can’t watch him grow and explore, I can only imagine what it would have been like. And maybe someday, the lump in my throat will go away and allow me to properly swallow when i’m crying. Losing your child is the hardest thing anyone can ever go through, it is the ultimate loss — the ultimate stress, I’ve been through alot, Degenerative Disc Disease, Lots of pain, surgeries, family problems, my distanced father, money problems, losing everything, having to rebuild — nothing, not even all of that combined in a single day even compares. The Bible says if you pray about something and believe in it, you must REALLY believe it is going to happen, you have to show that faith. So I put all my eggs in the “he was going to live” basket, pacing myself during his 15 days, making sure we got sleep and we’re rested, now of course I regret all of that. I know there was no way to know, and what I was doing was best for him, because I KNEW he was going to come home, I just was crushed when I knew he never would.

I hope this story inspires some, to try when there is even only a small chance. To hug your children tighter and be more patient with them, spend time with them because before you know it they are gone, grown up. BabyAidensJourney.com will be back this week for the entire way through our pregnancy for those that have never read it and to see the lives that Aiden had changed.

I miss and love you deeply my sweet little boy. Always and Forever. Aiden Matthew Beers | 10/08/09 | 10/23/09