The Heart of It All

 Being a heart mom is very challenging. It comes with heartache, fear, anxiety,daily medication, doctors visits, therapy appointments, etc. But it also has its advantages like, discovering have precious life is!

 Sometimes it can be so overwhelming. Recently we just celebrated Roman's first birthday. I found myself completely sad. I felt cheated that I didn't get to do the fun new baby things with Roman. I was wheeled out of the hospital without my baby. I came home from the hospital without my baby. Roman's room was empty with out him in it. I could not ease any of Roman's pain. I did not get to sit and rock him. When I did it was working around all the heart monitors, lead wires, picc lines.

 At times I just wanted to sit in a dark room by myself and cry, but everyone told me I  had to be strong for Roman. Honestly, I think this is probably the worst thing that you could tell a heart mommy. I think the best advice to give ANYONE going through hard times is that its OK not to be strong! Its OK to cry! Its OK to be angry! Its OK to want to be alone! I spent my time and still do trying to be strong for everyone, but honestly I'm weak. And I think I can be weak for awhile!

 One of the hardest things for me right is thinking about the future. With the girls I always can envision them going to Kindergarten, going to College, getting married and starting a family. With Roman, its so foggy. We honestly do not know his future. I am so glad when people will say, I can't wait to see what he is like when he is a teenager, and honestly it breaks me up inside knowing that we might not get to see that.  People say focus on today and not worry about tomorrow, but with Roman I worry all the time. Each morning when I wake up, I plead with God, please give me another day!

 But, when my little man gives me that huge smile, and big hugs I know that he is here for a reason! He is here because God chose us to be his parents. He decided that we would love Roman no matter what obstacles would stand in our way. He knew we would fight with all our might to protect him! He knew that his sisters would learn so many lesson about love and life, from Roman. He knew we would have the love and support from friends and family that truly care about us! He knew we would grow closer as a family because of Roman. He knew we would have times when we are weak, angry, strong, happy, and nervous, and yet He still picked us!! 

Transplant Night!!

Nothing can/could ever prepare you for that phone call telling you that they have found a perfect heart that would give your child life. Often I think of that day when the phone call came in. Thise words play over and over in my head.

When I arrived at the hospital that night, I was greeted by hugs and tears from the staff on the CTICU. At that point in time we had "lived" at the hospital for 6 1/2 months. They became our extended family. They were with us through every coding episode, on good days and bad, when we just needed to cry, and when we needed a good laugh! Jaime and I held each and cried! We had finally gotten the call!!

Since Roman had been so sick right before transplant, I wasnt able to hold him! It was a long seven days not holding my baby! That night before transplant, the nurses carefully placed Roman back in my arms. it was so emotional. I felt overwhelmed as I looked at him. He was very sedated and was on the vent. Panic overwhelmed me. Would this be the last time I get to see my baby boy? What if the new heart doesnt work, what if something happens. We put our trust in God and in the hands of the best surgery team.

Mindnight quickly approached! It was then time for them to take him down to begin surgery. Jaime and I walked down with him, and was greeted by a team of doctors. All we could do now was wait and pray. All night we got updates. Roman Rock it! At 5:00am his new heart was placed and his new life began with a perfect 4 chamber heart.

Roman was done and back in by 11:00am on May 7th. He was pink for the first time ever!!

Our lives were forvever changed that day. Words can not express the amount of gratitude we have for Roman's donor family.

The Phone Call

The days were getting harder, the hallways were getting longer, faith was being tested. Roman was tired. He had gotten the Rhino virus and had coded. He was back on the vent and we waited to see if his liver was going to recover enough to be placed back on the list. It was the longest seven days of our lives. Each day his counts got better. We were just waiting for the news that he was relisted. Finally on day 7, a Wednesday afternoon Roman got relisted. We were so overcome with emotion and relief.

This week was one of the hardest weeks ever!! One of my friends had to say goodbye to their precious baby, another was struggling. I was so overwhelmed and feeling like I couldnt go on another day. Friday May 4th, I felt the need to super clean Roman's room and to spend time with the girls. I cant explain what came over me! Saturday Jaime and I spent the am at the zoo with the girls. Later that day I walked to long hallway to see my baby again. I felt so helpless. He was on the vent and pretty sedated, but I could tell he knew I was there. My heart was heavy that day, until I walked unto the unit and I saw the other transplant family in the lobby. They had gotten "the call" the night girl before and were waiting to see their precious baby! It renewed my faith!!

That night I was feeling really down. Jaime kept telling me, 'Brooke, dont give up keep fighting, we got this." His words will never be forgotten.

Sunday, May 6th we proceeded with our day as usual. Mimi and Dave took the girls to church, Jaime went to work, and I went to see Roman. He was still on the vent and pretty sedated. I left around 3;30p to pick up the girls, Jaime went to be with Roman. Dave was helping me with Roman's slideshow for the benefit, so I stayed at their house for dinner and to complete it.

I was so intent trying to finish his slide show. I was working on a slide that said, "now we wait for Roman's perfect heart", when my phone rang at 6;35pm. It was a number that I didnt know and I usually let it go to voicemail, but something kept telling me to answer it. On the other side was a familiar voice, "This is Mike from Transplant team, Im going to patch you through to Dr. Hoffman." I jumped up running from downstairs, to upstairs, back and forth. Something happend and Dr. Hoffman could not be found, so Mike said, "we have an offer and we are accepting it, It is a perfect match!" Dr. Hoffman will be calling you so stay close to your phone." I was numb. I couldnt think.. Jaime had no idea. We were trying to call him on another phone while I waited. Finally, Dr. Hoffman called and said "Its a perfect, strong heart." I was so overcome with emotion! I was crying, laughing, and screaming all at the same time! Jaime was in Romans room when he got the call. Earlier, he said its so weird I dont see any of the nurses or docs around the last hour or so. Little did we know that they knew and were avoiding him because they werent allowed to tell us!

Amy and I ran out of the door heading down to the hospital. The surgery team would be taking Roman down to surgery at midnight!! Soon my baby would have a complete, perfect heart..

While I'm Waiting

It can't believe that it has been almost 6 months since roman was born. Today I was looking back at some of my facebook post and it brought tears to my eyes as we discovered that we were pregnant. Our family was going to be complete with the arrival of our third baby!

From the time we found out we were so anxious for the day when we could bring him home. The girls couldn't wait for him to arrive. We had a lot to look forward to. We moved to Delaware and we were so excited to put our new house together! We arrange Roman's room, washed all his clothes, and installed his carseat. Jaime and I went on one last date before we became a family of five. We had Roman's Halloween costume ready as he was suppose to come home the day of trick or treat.

Never in a million years, almost 6 months later did we ever think we would still be waiting for Roman to come home! Each day we pass an empty room, ready for the day when Roman comes home. My heart aches and longs for the day when I can hear Roman's cries, laughs, and coos coming from his room.

Waiting is so hard and it gets harder each day. When I reflect over the last six months so much has changed. I believe family dynamics's have changed the most. Jaime and I love to be hands on parents. The girls have really accepted the new "normal". While we wait we try to make the most of each day. We hug our girls tighter, play harder, and make sure we say we love you daily.

Never take a single day for granted! Happy 6 month birthday beautiful boy!!

God's Perfect Plan

The last 5 months have been some of the toughest times that Jaime and I have ever had to endure. It really makes you appreciate the simple things of life. Life can get so busy and we often take for granted how blessed we are. Each day take time to count your blessings.

Learning and trusting God's plan has been hard. We have learned to take each day hour by hour. We would celebrate as we made it another hour. Several times I prayed that God would just take him home so that Roman wouldn't have to be in pain anymore. I just wanted his suffering to end. But God has had other plans. So many times we were told we just don't know if Roman will make it through the night. Roman showed us just how tough he is!! Ro survived 3 strokes and so far has reached most of his developmental milestones.

A week ago Jaime and I were told that Roman was going to have to go back on the vent. We called on all our prayer warriors to pray and praise God we made it another week avoiding the vent and keeping lactates down.

We never take Roman's first experiences for granted! For every holiday we have decorated his room. Taking him outside for the first time brought tears to my eyes. Roman eating a Popsicle and loving it melts our hearts. Each day watching Roman do normal baby stuff makes me tingle!!

We know that God has a plan for Roman's life. Roman's road will never be easy. It will always be tough. So many times I think "God why me!!!" but I know that he chose us for a reason! We needed to be on this journey. We may not know God's reasoning know but one day it will all make sense!

Please continue to pray for Roman and all his heart friends. Roman is 1 and 100!!! 1 and 100 babies born this year will be diagnosed with HLHS. We have met so many families affected by HLHS and other heart defects. These babies are a true inspiration.

Am I Dreaming!

Finding out we were pregnant was a big shock for us. We found out in March of 2011 that we were gonna be blessed with our third child. We were so excited! When we found out we were having a boy we thrilled! He would complete our family!

Jaime and I struggled finding a perfect name for our boy. We really felt like we needed a strong name for our baby boy. We finally decided on Roman Michael. Roman was a good strong name and I think he has lived up to his name. His middle name honored both his grandpa's.

My pregnancy with Roman seemed normal and went rather fast. I remember praying asking God to keep him healthy. Little did we know that we were in for the shock of our lives! When he arrived I remember a since of relief when he appeared so healthy.

To this day it stills feels like a dream and at any moment somebody is gonna pinch me from this nightmare. Some days are better than others. Some days I find myself asking, "what did we do to deserve this!", and "why would God do this to any child" I feel its so unfair! I try to focus that God chose us to be Roman's special parents! Roman was given to us for a reason! Roman is a true gift from God. Each day we get to spend with him is a true miracle and joy.

Roman is 1 in 100! 1 in 100 babies will be born with HLHS. Please pray for families with children suffering from CHD!!

Transplant Process

Getting listed for a transplant is a process. You have to meet strict criteria to be consired for a transplant.

First step of the process was getting a heart cath to determine Roman's pressures and heart size. Roman also had to have evaluations to determine if his strokes would effect his overall well being. We prayed everyday that the Neurologist would grant their approval. Luckily one of the neurologist was Addies doctor so he knew us well.

Roman also had to have a series of blood work to determine if he had built up any antibodies that would make his body reject a new heart. A family interview had to be completed to see if we could handle the stress of the transplant.

Choosing a heart transplant was a difficult decision for Jaime and I. We prayed for days that God would make our decision clear as to what road we were to take. When we were told  transplant was his only option we felt Gods hand in it. We had a sense of peace about the path we were taking. A heart transplant is not a cure all. It is basically trading one problem for another. After Roman is transplanted he will be on numerous medications to help prevent rejection. His immune system will be suppressed and he will have monthly heart caths to endure. The first six months are crucial. We have to keep him as healthy was we can. Roman will not be able to be around dogs, cats, reptiles, or birds because of the risk of germs!! He will also have to wear a mask for the first 6 months.

After one week Roman was finally approved for his transplant and the waiting begins. We will not know where Roman is on the list. He is listed at the highest level. Unfortually because of the limited supply of donor hearts, some kids will pass waiting for their heart.  The average wait time is days to 4 months.

We pray that Roman will be strong as we wait! We also pray for the future donor family.

Please consider becoming an organ and tissue donor!!

Day by Day Hour by Hour

Roman has taught us many valuable lessons such as never taking a day for granted. At first we just focused on the day but Roman really has us living hour by hour. Roman would be great at one moment, and then the next hour he would completely fall apart. Jaime and I would fear when the hospital would call to let us know that Roman had "misbehaved".  Several times we would just get home and we would get the call that we needed to go back to the hospital because Roman wasn't doing well.

January was a time of happiness, sadness, and confusion. It was also a time of clarity and hope. Roman got to participate in the big move into the new hospital. The move went great. Roman was less than thrilled! He loved the bright sunshine in his room!! That day we celebrated as Roman reached full feeds! Everyone was so excited. During rounds the doctors beamed, the nurses cheered, and mommy and daddy celebrated. However, the very next day when I walked unto the ICU floor the doctor stopped me at the front door. I could tell by the look on his face something was wrong! He then told me that Roman had blood in his stool. They doctors were hoping that it was just a milk allergy, but after testing he got the NEC infection again. Feeds stopped, antibiotics started.

Jaime and I were devastated! We were hoping that his infection was caught early. However, a few nights later we were called into the hospital. Roman had to be sedated and put back on the vent. The next day an echo was performed and his heart had taken another hit.

Doctors were stumped as to what to do. Ro had numerous testing. After several care conferences, it was determined that Roman's only hope was a heart transplant. The process to get Roman on the list was very detailed. We were very nervous as we went through the process. Roman had to be evaluated by neurology, had to have a series of blood work, and we had to complete an interview. The very next week Roman was listed and now the waiting begins!!

Christmas Miracle!!!

Roman had a rough start to December! He was still recovering from MRSA and his NEC episode. He was making progress slowly and his heart had taken a hit. One cardiologist told us that she thought he would need a transplant and even then she felt he wouldn't survive. Jaime and I spent the weekend in prayer. We braced ourselves for losing him! We even began planning his funeral. Only through the Grace of God, Roman bounced back.

Doctors started weening Roman off the vent and quickly he was switched to CPAP. Roman also began feeds again. Quickly he started looking better and better. His echo's were also looking better.

We knew we weren't out of the woods yet, but we actually started breathing a little easier.

Christmas was hard! It was so hard to be happy when Roman was not home with us. Luckily thanks to family and friends they made the holiday season a little more bearable.

Little Roman showed us over and over how strong he is! He was our Christmas miracle!!

The story of the Rainbow

Roman's Rainbow

The day that Roman was sent to Children's my sister was watching Presley and Addisen. When driving to church that day the girls saw this rainbow in the sky. Presley quickly said, "Mimi, that rainbow is for Roman. It's Roman's Rainbow." I am so thankful that Mimi took a picture of the rainbow that day.

To me that rainbow was a sign that Roman was going to be ok. God promised Noah that he would send him a sign that the storm was over. To me I will always think of a rainbow as our hope that the storm will soon be over!

 Roman appeared to be recovering well and we were told we would most likely be home by Thanksgiving, however Roman got an infection in his intestines. He began taking antibiotics. However this infection was a too hard for Roman to fight. He was rushed back to the ICU. Once again his body began shutting down, he was in shock. His heart also took a big hit. We were also told Roman had a form of MRSA and had suffered from 2 strokes. Doctors didn't give us much hope and said the next couple days were crucial.

Roman had other plans! Roman started to wake up on his own and he fought back. Roman however, was a nice shade of yellow due to jaundice because of the hit his liver took and not being on feeds. Doctors were happy with his progress. Slow and steady wins the race as they would tell us everyday.

We were hoping at this point to have him home by the end of December, but Roman had another plan!!

Pre-Surgery

After the doctors explained Roman's condition we were finally able to see Roman. He was hooked up to at least 7 different pumps adminstering life saving medications. He was completly sedated and on the vent. His belly, face, and hands were still blue. His body had went into shock as his ductus, which in heart healthy baby closes days after birth, closed. Roman need this to remain open. He was put on prostaglandins to keep the ductus open until his body was recovered enough for surgery.

Those days feel like such a blurr to me. People were in and out of Roman's room daily. We had daily meeings with a team of cardiologist, surgeons, pyhscology, social workers, and nurses. All I wanted to do was hold my baby boy.  I will never forget the day that the nurse asked, "Do you want to hold him." It was an answer to my prayers. Finally after a week I would finally get to hold my son!

First Attempt

On Ocotber 28th, 2011 we were thrilled to welcome our third child Roman. That day was filled with so much anticipation, excitement and nervousness. As we drove to the hospital Jaime and I began talking about how excited we were to welcome Roman into our lives and that we could not wait for the girls to meet Roman.

We arrived at the hospital at 5:00am. Everything went as planned. We were a little delayed becasue am emergency c-section pushed us back. Jaime of course kept me calm as I laid there waiting to see my little man. When I heard that strong cry a sense of relief came over me. He looked wonderful. He weighed in at a healthy 9lbs, 1oz. I was so excited when they laid him in my arms. Our family was complete.

Little did we now the challenges that would face us. Roman was having some trouble keeping his stats above 90, but when we would do kangaroo care they would rise. Early Sunday morning Roman was not interested in feeds. Without causing me much alarm the nurse said that she was going to take Roman to the nursery so i could get rest. An hour later she came in to tell me the doctor ordered a chest xray but he was doing fine. Soon after that I walked out of the room to find my baby. The nurse quickly took me back to my room. I knew something was wrong. Soon the NICU doctor came in and sat down and said," We need to talk about your boy, he is very sick. He needs to be transferred to Children's now."

A few minutes later they came to tell us we could go see Roman before they transported him. I will never forget the pain each step took walking down to the NICU, but I didn't care I needed to see Roman.
When we reached the NICU, Roman looked bad. He had been placed on a vent, he had IV's everywhere and his body was blue. They quickly got me a chair and I sat by Roman. He squeezed my finger as if he was telling me, "Mommy I love you, I will be ok." He was then quickly rushed away."

I quickly returned to my empty room trying to process all that had happened but my mind was so focused on getting out of the hospital. Soon my doctor arrived not knowing what had just happened. Thankfully she released me to go to the hospital to see Roman.

As soon as we got to Children's we were sent into a conference room. Two doctors walked in with pictures of a heart. My heart sank as I knew saw that it was heart related. October 30th, 2011 is when we found out our son had a congenital heart defect called HLHS. His left side of his heart was underdeveloped. He would need a series of heart surgeries to survive.