Our Letters of Hope

In June of 2008 I found out that I was pregnant. This was going to be my fourth child. I was told I was going to have a baby in January. Off to a baby doctor, because I wanted to make sure that my baby was getting all the proper care. Planned or not I was going to have this baby and love it. My first prenatal appointment brought my first scare of the pregnancy. Besides being sick 24/7 I was diagnosed with Placenta Previa. This is where the Placenta is over the cervix. This diagnosis I believe to this day saved my sons life.

From this diagnosis I was sent to high risk doctors. I went and seen them during my 17th week of pregnancy. I walked in feeling scared, because I did not know what to expect. They did an ultrasound and the look on the techs face is one I will never forget. I can not describe the look in her eyes or the concentration on her face as she excused herself and then came back in with the doctor. First thing he said was, "Your placenta moved back up, but it looks like there may be something wrong with his heart." HIS heart I was having a boy!!!! Then I registered the rest of what he said, "Something wrong with his heart." I looked at the doctor and he asked if I would be willing to have an amniocentesis to make sure that his chromosomes were all right. I agreed, they promised to call with the results, and I was scheduled for a visit at 24 weeks gestation.

I went home and let that all settle in and I prayed a lot. The doctors finally called and said my son had 46 perfect chromosomes. Well that was a relief. So I went into the next appointment feeling hopeful. I mean how could I not the placenta previa went away and he was perfect the test even said so.

At 24 weeks my son and I went through a fetal echocardiogram. This is an echo of the baby's heart while in utero. So there I was in mid July 24 weeks pregnant on my back for 2 hours. I was very quiet and listened to the doctor and the tech chat very softly mentioning cardiac terms here and there. I remember laying there in a daze still just praying. I would occasionally look over to my friends and aunt, but mostly I just concentrated on breathing quietly and praying.

2 hours after I first entered that room I was escorted with my sons future Godmother, my aunt and a close friend to a room no bigger than my bathroom at home. In the room was 5 chairs, a small round table, and a couple of filing cabinets. In the middle of the table there was a box of Kleenex. I remember that the room smelled stale and the tension in the room could have been cut by a knife. After about 5-10 minutes the pediatric cardiologist that did the fetal echo came walking in with a med student and one of the high risk OB doctors.

The booklet in his hands made sense to the look on his face. The book said your baby has a Congenital Heart Defect. I remember looking at it and thinking this is not going to be as bad it seems. Well it wasn't it was worse. The doctor sat down and I will never forget the look on his face, the tone of his voice, or the words that have forever changed my life. He looked at me and said exactly this, "Your baby has a Congenital Heart Defect." I said OK how bad is it still thinking it might not be that bad. His next words were this, "It's not good he has the most severe CHD there is called Hypoplastic Left Heart Syndrome (HLHS)"

I felt like I had been punched in the gut. I know that the doctor kept talking, but what he was saying at the time was a haze. I let my head fall into my hands, tears silently fall on my cheeks, and I prayed. I felt all my loved ones hands touch me and try to console me. I was not loud I was so quiet but very shocked and they all knew it. The doctor informed me of all my options, but the only decision I made that day was to go on with my pregnancy no matter what. Before I knew it the consultation part was done all I had to do was find the strength to get back tot the car.

Once we were on our way home I silently cried a bit more. I was dropped off at home and I realized just how bad it was now I was alone. I fell to my knees and I wept. I did not cry hysterically, but I did cry. I had many more appointments and days like this through the rest of my pregnancy.

I was referred to the hospital where the pioneering doctor for my sons heart condition was at. My first trip to Ann Arbor, MI C.S. Mott's Children's Hospital I had many decisions to make. I went alone and I am glad I did. I had to decide a plan of action for after my son, who was now named Ethin. By this time I had three options left: Comfort Care, Heart Transplant, or a three part surgery. Well I thought the surgery was the best option besides for the CHD my son was going to be born with I was at the best hospital.

I had many appointments weekly at home, monthly to Ann Arbor, and monthly to a closer high risk pregnancy doctor. It was finally decided that after January 1, 2009 I would start staying in Ann Arbor. On January 9, 2009 at 4:07pm Ethin RaiLuc Twigg was born weighing 6lbs 4oz and he was 19 1/4in long. God had sent me a perfect baby boy with a very special heart. I had a c-section and the best thing my ears have ever heard was when I heard him cry. (To this day he has never cried like that again). Ethin was rushed out of the operating room and I did not even get to peek at him, hold, him, count his toes, NOTHING!!!

When Ethin was 4 hours old I was finally able to be wheeled into his NICU pod room to see him. There he lay helpless, IV's everywhere, Cords, wires, and on a ventilator. My hopes of holding my new son were crushed in seconds. I could look at him and I could touch his hand that was it. A few tears rolled down my cheeks as I touched him and looked at him those first few moments. I felt like I had waited forever to see my miracle baby. There he was he looked perfect in every way besides the fact that I knew he was born with "Half a Heart."

Ethin was transferred to a Pediatric Cardio Thoracic Intensive Care Unit (PCTU) or POD A the next day. Up there he was surrounded by other CHD babies. Ethin remained sedated, on the ventilator, and laying in his bed until January 15, 2009. At 6am I held my son for the first time ever. It took about four people to hand him to me, but he was in my arms. He fit perfectly there too. I was able to hold him this morning because at 8am he was going to have his first open heart surgery called the Norwood. So there I sat with Ethin in my arms our primary nurse Judy looked on with great satisfaction and my pastor prayed and my friend she took pictures and videos.

The time came to put Ethin back in his bed and that was tough, but I sat next to him with my head close to his and I prayed with him, I read to him, and I gave him a pep talk. I said exactly this, "You fight you come back to me so I can hold you again. I fought to bring you this far now you have to fight the rest of the way." Before I knew the surgeon was there and we all prayed together and then 15 minutes later they were pulling me away from him and I watched them breathe air with a mask into my son and wheel him away. I finally let it out I sobbed. I in that moment did not know if I was doing the right thing, if I made the right decisions, or if I would ever get to hold Ethin again. My heart was hurting more in that moment than ever to that point in my life.

When I could I went to the waiting room and sat and watched the clock. The first hour and half went by and finally we had an update. Ethin was on the bypass and they were just starting he was doing well. Seconds felt like minutes, Minutes, felt like hours, Hours felt like they would never end. Many updates came until about 2pm when the surgeon came up and told me Ethin was on his way up and all went well. He told me that when I seen him he would look sick and very swollen. After an hour the nurse came and got me my pastor and friend had left and so I went back by myself to see my son. When the surgeon told me how bad he would look he wasn't lying. Ethin was a wreck. He was sick looking, very swollen, and his chest was still open. I cried because I was happy he was alive, but he looked so awful. He had so many IV's, wires, tubes, cords, this was worse than before I let them take him. I was taken back out of his room as Ethin started to not do well.

The first 48 hours out of surgery was awful. He looked awful, but still all I could do was keep praying that he was going to pull through that God would continue to keep Ethin going. By the second 24 out of surgery Ethin was doing awful. His little body was not ridding itself of the extra fluid. They started talking about taking him down to the OR for a pulmonary catheter. Within two hours of that discussion Ethin began to go to the bathroom. God held Ethin in his arms those first 48 hours and God was pulling my son out of this.

My CHD Warrior my Punk as I began to call him spent his first 2 ½ weeks in that Pod before going to general care. Ethin had minor set backs, but over all was doing great. Once on the floor I got to bathe him, feed him, hold him regularly, had to learn his medications, I had to know how to place a feeding tube, and most importantly I needed to know what to look for when we went home. After a week on the floor much to our surprise we were going home. What a sweet thought we were going home for a few months right?

After 6 days at home I was taking Ethin to our local ER. Ethin's breathing was hard for him, he was sweating, not tolerating his feeds, he was changing colors, He was not my normal baby. Once at the ER they called U of M right away and before I knew it we were on our way back by ground, because the helicopters were grounded. So three hours later we were back to the hospital we had just left. Not just the hospital but the PCTU.

Ethin was back in the Pod and for four hours he continued to have apenic (Stop breathing) episodes. The doctor came to me and said he was sorry but he needed to put Ethin back on the ventilator. My heart sank and I knew that this was best for him. I waited anxiously in the waiting room for them to come and get me. When I was brought back to see him I looked at my beautiful boy and realized at that I was not ready to see him with a tube in his mouth again as tears just fell from my eyes.

Ethin was back to a machine to keep him breathing. I felt like we had such a set back. After one week they blindly took him off the ventilator. With him for the last week never breathing on his own for more than 55 minutes at a time out came the tube. Thankfully this worked and we were home four days later.

Home this time was grand. We had moved into our own place while he was in the hospital. When we walked into our new home there was a big welcome home sign covering the whole door. After a few days we were on a schedule at home that fit us. I tube fed him for the first week we were home, doctors weekly, I had adjusted to the syringes of medications through the day, and I was learning to sleep when ever he did. My other children were back on a routine schedule of coming over and our life was settling out to a new normal. I went shopping at the middle of the night as his immune system could not handle being around a lot of people at once. This meant we were pretty much contained to our home.

Then on March 11th we went to his cardiologist and he was very pleased by Ethin's progress. March 12th we were at his pediatrician's office and he was very happy with Ethin's progress and Ethin received his first set of immunizations. Then on March 13th Ethin started to go down hill. He was not sleeping, he was vomiting a lot, his bowels were very runny, and he was running fevers. I gave him Tylenol with no relief. I took him to the store to get him a new swing and while in line he started to seize. I rushed him to our local ER to have them transport him to the closest children's hospital which was about 40 minutes away. Ethin went by ambulance and I followed in my car.

We spent the weekend in this hospital and on Monday afternoon we were headed back to Ann Arbor by ambulance. Once in Ann Arbor we got word that Ethin had rotavirus. We were also informed that he would receive his first heart catheter on Friday March 20. A heart catheter meant they were considering his second surgery the Hemi-Fontan. After the heart catheter I was told April 1, 2009 Ethin would have his second open heart surgery.

With another surgery approaching I took the weekend and I went home to see my three other children. While home the thought of surgery was on my mind, but I knew I needed to spend time with Jessa, Jonathin, and Jayde. I called and checked on Ethin often while I was home and a friend that I had made at the hospital, another heart mommy was going and spending time with Ethin too. The weekend was long. You would never know how hard it is to try and juggle all of this and the anxiety of trying to split being a mother between a sick baby and three children.

Once back at the hospital I knew I had one week until surgery and this was a long week. While trying not to miss a single day or moment with Ethin surgery was creeping up on me and the stress of the day was always in the air. I took in every second of every moment with Ethin. As the surgery day approached I began to make sure to never miss a thing. Ethin was moved from general care into moderate care on the Friday before surgery as he needed a bit of extra care do to not breathing as well again.

Before I knew it there was one more night to spend with Ethin. I stayed at the hospital that night never sleeping so I could give him his last bath, last bottle, and hold him as much as possible before the next day. My pastor arrived early Monday morning. At 11 they wheeled me down to pre-op in a wheelchair while I held my son wrapped up in his prayer shawl. There I sat with Ethin for about half an hour when the operating team came to take him from me. The tears fell uncontrollably and as they walked away with Ethin.

I was escorted up to the waiting room where I had sat just 2 months earlier. Again the clock was my worst enemy. Kim our Nurse Practioner came in every hour to let me know how Ethin was doing. A two hour surgery turned to four. Finally his surgeon came in and talked to me. She let me know Ethin had come out and was being brought up to the pod. She let me know he looked very sick and he was all hooked up again to things. I expected this so I was prepared.

I finally got to see my son 7 hours after I gave him to the surgical team. I walked into his room bed 13 and there he was very swollen and hard to recognize that was my son. Our primary and favorite nurse Judy Haun was his nurse that night. Ethin was very unstable. The look in Judy's eyes was a very harsh reality that Ethin was sick very sick. I was not ready to see him like this again and it was hard. The first 24 hours were a prayer. The next 24 hours were a living nightmare. At about 9pm on April 2, 2009 I was called to go up to the hospital. There was a life support tech in my sons room and the doctor pulled me aside to talk to me. He said that ECMO (Baby life Support) was last option but he had to cut open Ethin's chest immediately. He also told me to prepare for the worst. I was escorted out of Ethin's room and I called my pastor and my support people from home. Everyone slowly arrived and at about midnight I was allowed to go see my punk again.

Ethin looked so bad and all I could do was stare, cry, and pray. I will never forget the looks on the faces of the doctors around me they knew he was bad. The following day April 3, 2009 Ethin was baptized at the hospital. This was not the baptism I imagined or planned for him, but I was so afraid I was going to lose my son. I spent the next 3 days in terror of Ethin not making it.

On April 7, 2009 I received a phone call it was the hospital telling me I needed to get up to the hospital. There I sat next to him and I knew he was not good. His nurses faces said a lot and the look on the doctors face was unforgettable. All of the sudden the doctor left with a piece of paper in hand came back 15 minutes later and said, "Set him up for surgery." This was do or die. Ethin's numbers had dropped drastically low and if he did not have this emergency surgery he would die. There was no option other than to allow them to take him to surgery again. I remember staying with him and he was to unstable for me to hold him and all I could do was hold his hand and cry. Before I knew it I was walking next to him as they took him down for his 3rd open heart surgery.

Again to the dreadful waiting room where the clock was my worst enemy. Hourly updates from Kim and prayers is how the rest of this day went. Then again it was his surgeon who appeared in the waiting room. She said everything went well and I could go back and see Ethin in about an hour. At that time my friends left and I was alone again. They came and got me to go see him. I was so grateful that he was alive.

This was a turning point for Ethin. He began to slowly improve. The day came to extubate him and let him breathe on his own April 15. Judy was there that night and she placed my son into my arms. She seemed to have been there through all the really important times for Ethin and I. She took pics of me holding my son and I was glad I got to share this very happy moment with Ethin while she was there. I finally put Ethin down and I went to get some sleep. An hour after I left the hospital they called and told me he was being reintubated. Are you serious was all I could think. There I was holding him an hour earlier and now something went very wrong.

I raced back to the hospital to find Ethin back on the ventilator. The doctors told me his right lung was completely collapsed. They also said in the morning they would do an ultrasound, but they thought his right side of his diaphragm was paralyzed. No doubt the morning came and I was given the news that Ethin would need another surgery the following day. I broke down. I was angry and sad. I could not believe this was happening to my baby. The following day April 16 he had his diaphragm plication surgery. All went well and it was a very short surgery just barely 2 hours long.

On April 18 Ethin was taken off the ventilator again and this time it worked. He was put on CPAP. Ethin also had another chest tube placed brining him to a grand total of four chest tubes. On April 23 Ethin was doing well and he was moved from ICU to a step down unit called moderate care. In moderate Care Ethin was on high flow oxygen and I went home. While home on April 25 they moved Ethin back into the ICU. His numbers dropped and they were having a hard time keeping him where he needed to be.

On April 30 Ethin was placed back on a ventilator. Ethin had stopped breathing the night before, but he came back quick. On this night he did not have such luck. There I walked back to see him and he was intubated again. All I felt was complete failure and overwhelming feelings. Why could we just not get on the right track to keeping my son OK. The problem for Ethin was the doctors adjusted his blood pressure meds and this caused his blood pressure to drop and they had to give him fluid boluses to get it up. Ultimately Ethin could not handle the extra fluid and he needed to be reintubated to stay breathing.

On May 8 I arrived at the hospital with my other children to find Ethin on CPAP!!! This meant Ethin was breathing on his own. He needed the positive pressure to do it, but he was breathing without a tube. What a way to spend my mother's day weekend. All four of my kids together and my son finally extubated again! On mother's day I had our first full family photo. We were all together and I could never of asked for more than that.

The next couple of weeks were progressive in small ways every day. The doctors took everything with Ethin very slow. Before we knew it he was on a high flow nasal cannula. And finally on May 22 Ethin was leaving the PCTU. We were transferred out to the Moderate care rooms. After 52 days of ICU he was bound to leave it all behind!

Well let me tell you behind us is ICU and my son as I write this letter is still in moderate care. Not only is he in moderate care, but he is breathing on his own with NO oxygen and today is June 2. Ethin has had a very long stay here and a very rough road this time around. He still is struggling with his diuretics, sedatives, and feeds. Hopefully in one more day I will be able to feed him again by a bottle. It has been 2 months for that! Ethin is still on some IV meds and still needs the hospital care. Ethin is slowly improving and there have been days out of the ICU where he goes back a little, but he is fighting. He is my CHD Warrior. We have a meeting later today to discuss his long term plan, but they are saying July before I can take him home again.

No matter when I take him home we will be back in September for a heart catheter and then another open heart surgery. All I care about is getting him well. I want to take him home to show him God's beauty outside of this hospital. We live by the Great Lakes and I want him to see it.

I do not have an ending to this letter as there will never be an end. Ethin will always be in Congestive Heart Failure. One day I know Ethin will need a new heart. All I can do is pray that the one he has can make it for as long as possible. This has opened my eyes to many things. I live every day as though it may be my last. I am thankful for the small things in life. I do not know Ethin's future, but I know that God is holding him. I also know that I have one of the Strongest Warriors in the world and I am proud of my little punk my CHD Warrior is tough Ethin is a Fighter and he never quits. Please help him and other children fight Congenital Heart Defects. You can make the difference in the heart of a child and in the hearts of many. My son is 1 in a 100. My son has defied all odds. Please do not turn your head, because you now know one child with a CHD!

Jessica

Monday June 29, 2009

I find it necessary to attach this to my letter of Hope….My son Ethin RaiLuc Twigg has gone to his eternal heavenly home. He passed away on June 29, 2009. I find it necessary to tell you this as it is now too late for Ethin, but I know that it does not have to be too late for so many others. I miss my son right now more than you could ever imagine. There is nothing I would not give to hold him one more time or to kiss his sweet face. To see his smile or hear him cry or coo. Please know that you can make a difference and you can help. Please help us.

With a crying Heart,

Jessica Twigg Mother to a CHD Angel

Ethin RaiLuc Twigg
January 9, 2009-June 27, 2009

Poems written by me

HERO

H-E-R-O four little letters with such a big meaning to me.
God sent me one on a cold winters day in January.
I had this hero growing inside of me months before
Not knowing all the things God would have in store.
At 17 weeks a routine check up or so I thought
But I left the office feeling scared and very much distraught.
A few weeks passed with tests and results galore
Another visit and God opened my eyes to what he had in store.
A baby to bring me joy, happiness, and smiles
A baby who would be special, but would have many trials.
God was going to use this baby to bring me back to him.
By golly my son’s a hero teaching me not to sink just swim.
My baby was sent to me with only half a heart
Impossible it seemed what a way for a hero to start.
I couldn’t see him at first I waited forever it seemed
But when I did it was nothing like I’d dreamed.
I was told this would be hard this would be extremely tough
But never did I imagine all the wires, tubes, IV’s and medical stuff.
I left him with tears in my eyes now seeing God’s plan beginning to unfold
Looking at my son knowing he was sent here with Angels and a heart of gold.
My hero spent 6 days staying strong for the first fight he would go through
He proved to me in 6 days he was tougher than me and everyone I knew.
On day 6 I held him for the first time ever
Knowing God had bonded my hero and I a bond nothing could sever.
The clock it seemed to be my worst enemy all day long
For 8am came they took my baby my hero I was supposed to be strong.
Instead of following my little punks lead
This is where tears flooded I began to beg I began to plead.
Dear God be with my boy in this hour
Please give him your strength give him his hero power.
Give him back I need him here with me
Please God look after him I come to you on bended knee.
When I could to a room we went to wait
I think my body was in a shocked trauma state.
The NP came with news through the day that never ended
His surgeon came all was done my son did great one to be commended
They brought me back to see my hero son
He looked so different so not him but this first battle he had won.
The days after all seemed to start to blend
I remember asking God is there ever an end?
My little hero was coming through just fine
All he had to show for this was a scar a simple little line.
He grows stronger with every single passing day
My son brought me closer to God in every single way.
My boy is strong he is extra tough
But most importantly he showed me love is always enough
He’s my hero for lots of reasons and lots of ways
He is so small yet made it through the toughest of days
His heart has taken me to the heart of my father above
He has shown me all of God’s pure undying love.
They say God has a plan for everything and everyone
My son has accomplished so much but I know he’s far from done
Look at my tiny hero my little baby boy
When I see him I see him through tears of joy
He is so little so tough and so strong
He has shown me by keeping faith and hope with God I can’t go wrong
Though we are not done as there is much more to repair
God gave me son, a punk, a hero to share.

Jessica Twigg 2-23-09