A Year to Remember

Loving

Days after transplant! First smiles!

Hours before they took him down for his transplant

 

Its so hard to believe that in a few days we will be celebrating Roman's one year heart-a-versary. It has been an amazing year filled with triumphs, defeats, celebration, and purpose.

The first month after transplant went incredibly smooth until his 1 month biopsy and cath. We quickly found out that Roman had level 3a rejection which is pretty serious. However, after some heavy IV steroids, a month later Roman's rejection level as remained ZERO!!

Roman was finally discharged from the hospital just in time to spend his first Father's day at home. However the stay was shortened by a tummy virus and we headed back to "the slammer" for a 4 night stay.

The summer remained a blur as we were going to clinic weekly, started intense physical therapy, occupational/feeding therapy, early intervention, etc. Roman quickly realized his love for food and by late August we were able to remove his feeding tube once and for all! Roman was also reaching his pt goals and was finally sitting up by himself, which lead to crawling, which lead us to walking! Roman also started making his first sounds and found a great interest in sign language.

As we entered cold and flu season, we sheltered ourselves in making sure we kept Roman as healthy as we could. Unfortunately, the Noro Virus plagued our household and Roman took it very hard. We spent 4 weeks off and on in "the slammer" trying to get him back to his normal. Roman received the first ever, for a transplant patient, oral antibodies to help his body fight the virus. After loosing 2 pounds and making food changes we were finally over it after 2 1/2 months!!

Roman also had a number of follow up appointments, to make sure his vision and hearing was ok since he suffered a lot of traumatic events in his short little life. We found out in December that he had mild hearing loss, and unfortunately had developed cataracts in both eyes as a result of the meds he was taking for his heart. By March, we saw a decrease of activities that Roman had been able to accomplish and we knew his eyes were getting worse. At his March appointment the doctor informed us that his vision was almost gone because the cataracts had gotten worse. Surgery was set in three weeks. Roman handled his surgery like the champ that he is! As so as his eye patches came off, we were able to tell a night and day difference! It is incredible!

Roman also took his first airplane ride to Tennessee! He loved every minute of it! He has also enjoyed many trips to the zoo, and the park.

On May 14th we will hand our little man back over to his trusting cath team. We ask that you join us in prayer that he has zero rejection and that he continues to stay healthy! We can not express how thankful we are to have so many supporters and prayer warriors for our little man!

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!!