Coleman's heart story

I haven't posted a blog in soooo long! I'm sorry I haven't kept up with it much. I try to update my facebook page, but I even get behind on that! I've been working on this off and on for a while.


February was Heart Awareness month. I posted some facts on my Facebook about CHDs. But I wanted to tell Coleman's story again for anyone who may not have read or knew about it. It tells what happens when you find out your baby has something wrong with it's heart and what Coleman went through. So here it is...




In August 2012, we found out we were expecting our first baby. So exciting! On November 17th, at 17 weeks pregnant, we found out early that we were having a baby boy. At 28 weeks pregnant I had a doctor visit. It was the one for my glucose test and my husband just happened to come with me that day (I was so scared I would fail it! Later finding out that would have been a lot better than what we did find out). I checked out good, but reminded them they were going to do another ultrasound because they said they couldn't see his heart good enough at my 20 week anatomy scan. I was just excited to have an ultrasound to see my baby again! I laid on the ultrasound table while it took a while and the tech wasn't really saying anything. She said she was finished and was going to get the doctor. This is when I started to panic. "Could something be wrong with our baby?". Matt, my husband was trying to calm my nerves and say it's probably nothing. The doctor came in and did a quick look. He didn't say much either, but that we needed to go to a specialist to get a better look. They made us an appointment to head straight there. As we drove over to that office, I started crying and Matt again tried to calm me. We arrived at the office and they took us back. I laid on the table for another, more detailed ultrasound (We had opted out of this genetic ultrasound at 12 weeks because genetics didn't matter to us and this is the type ultrasound this was). The tech wouldn't say anything was wrong but made small conversation. The doctor came in and took over. He immediately said "there is something wrong with the baby's heart". I looked at Matt in shock. He came closer to me and held my hand. Shock and panic stricken trying not to freak out and cry, I asked if the baby would be ok, the only thing I was really thinking. The doctor told us the baby had Hypoplastic Left Heart Syndrome(HLHS), the left side of his heart severely underdeveloped and missing the left ventricle. He told us some of what he knew about it. That there were options for us, one being termination, another compassionate care (just let it go), or the main option, 3 surgeries(Norwood, Glenn Fontan), but no promise the baby will make it. We obviously wanted our baby to have the best chance possible no matter what it took. We got sat in the counseling room while they scheduled us to see a pediatric cardiologist the following day, Dr. Sharma. Trying to soak everything in, I cried.

We saw Dr. Sharma the next morning. We were the first ones there before they even opened. We were anxious to find out more. Dr. Sharma did an ultrasound and confirmed the HLHS diagnosis. He explained the condition in more detail and told us about the surgeries. There would be one at birth, one at 6 months, and one at 3 years. He told us all about them and answered all questions we had. We could tell he was compassionate about it and felt for us.

 We followed up with Dr. Sharma several times throughout the rest of my pregnancy for more ultrasounds and to be the most prepared with what they saw. He scheduled for us to meet the surgeon. We went to the hospital and met Dr. Kogon. He talked to us for a while and asked what we knew. He made us feel comfortable. Coleman's heart also made my pregnancy high risk. I saw a whole lot of my OB office and doctors! Twice a week appointments the last 2 months. I had NSTs twice a week to monitor his heart rate and movement. One time I ended up at the hospital for observation because his heart rate was high. It ended up being because of a fever I didn't know I had. I got many ultrasounds, four in one week one time! They scheduled for us to meet one of the NICU doctors and tour the NICU. We did that and saw where Coleman would be after he was born. We got to find out just a little more about what they would be doing with him when he was born. I was glad the all of these doctors were making sure my baby was ok in there and were getting prepared for him.

All of these thoughts go through your head when you find out something is wrong with your baby. Will they live? Will I get to hold him? (I thought about this a lot. It really bothered me I may not get to hold my first baby when they're born. It bothered me my delivery wouldn't be normal. I struggled with it not being fair) I struggled with the thought of having to be away from him (he was to be transported to the children's hospital to prepare for surgery). What if something happened to him? It's not fair, he's safe in my belly, but when he comes out he won't be safe anymore. What will happen to him? Many many thoughts go through my head. When you find out there's something wrong, you want to research it and learn all you can about it. I eventually learned not to read family's stories of their child's CHD, because unfortunately, they don't always make it. These stories were in my head. I cried. A lot. My doctor noticed how upset I was and helped me. An appointment I wasn't even scheduled to see a doctor, and he came in just to check on me and talk to me about what could help.

It came down to 38 weeks. I had not dilated at all and baby wasn't even far inside my pelvis. I had bad swelling and pregnancy induced hypertension.  One doctor suggested induction soon, another talked c section. They said ultimately it was my decision to make. 

I thought about it for a little while. A bit upset at the thought of having a c section. It wasn't what I had ever thought, but it seemed the better choice for me. I chose c section because I didn't want to end up with an emergency one anyway, and also since my cervix was unfavorable. We scheduled for April 22nd! Everyone was notified at pre op, Dr. Sharma would be there, nicu doctor, a whole team. It calmed me a bit to know these people would be there just for my baby. I became comfortable with the idea of having a c section. I knew that whatever I had to go through would be nothing compared to what my baby would ever have to go through. I had to try to be strong for my baby, my heart warrior would be here soon.

We were nervous. The day we had been trying to prepare for, but couldn't really prepare for, was here. On April 22nd 2013, I was exactly 39 weeks pregnant and scared to death, not really for me, but for my baby. We headed to the hospital.

When we got to the hospital and I was anxious to go back. My cousin prayed with us and then I went back to get prepped. I had a few family members come back to see me and before we knew it, it was time to go back to the OR! They got me in just a bit early. They rolled me back and Matt stayed in the hall getting scrubbed up and dressed to come in when they told him to. They got my spinal in finally(after some pain. I'd say most painful part) and I laid down on the table. Matt was in there with me then. I asked him what they were doing and he said they're cutting me open. They'd already started and I didn't even know! 

It seemed like a few minutes Matt and I talked just a bit, and then we heard the cry of a baby. Our baby was born! 

Coleman was born at 10:08am weighing 8lbs and 20.5inches. He looked perfect! You would never know something was wrong with him, not even blue at all. They cleaned him up, put on the pulse ox, and started his IV. Matt watched and took pictures and came and showed them to me. Then they brought him over to me so that I could see him. He was so beautiful and precious. I talked to him and he tried to open his little eyes to see me. I gave him his first kiss and then they wheeled him away to the NICU(where they were going to start a ventilator and prostaglandin(medicine to keep a heart hold open that would usually close after birth, and also for Dr. Sharma to do an echo) and Matt followed. They wheeled me into recovery where my mom came back and sat with me. I was in recovery for 3 hours because of bleeding, and I was very anxious to know what was going on and I wanted to see my baby. Matt had called and told me Dr. Sharma sounded like he had good news. He told me that they didn't need to put Coleman on prostaglandin to help keep a hole in his heart open. He also didn't need to be on a ventilator. This made me calm a bit. I hated to think of my baby having a vent shoved in to breathe. Dr. Sharma came to recovery and talked to us. It seems like such a blur to me in the state I was in lol, but I will state in short terms. He said Coleman was doing very well and he did not need the ventilator or the medicine.  He turned out slightly better than they thought. He said he would not be needing the first surgery. Shock for us! I remember saying "we don't even have bottles!" Lol we didn't expect to feed him because we thought he would be fed via nasal tube. We were so excited and so shocked and thankful! Everyone rejoiced in the waiting room. What a miracle this baby boy is! I was so excited! We all were! They wheeled me in my bed down to the NICU to see Coleman. Oh my goodness my emotions when I saw him. They handed him right over to me. I got to hold him and my heart was so so happy. I actually got to hold my baby. Matt held him too. We were in awe over our beautiful little miracle.

Coleman stayed in the NICU for monitoring for 7 days. He did so great! He ate great. He didn't need his IV, no oxygen, no medicine, nothing. He was just being monitored, other than the jaundice bilirubin lights. Dr. Sharma did a couple of echoes on him to look at his heart and said he was good to go home!

We took Coleman home on April 28th, his due date! What a blessing to bring our heart baby home! We followed up with Dr. Sharma often. A normal heart oxygen is 100%, Coleman's normal is 80-90%. It shouldn't be too high or low, either can mean something is wrong. We had a pulse ox at home and tried keeping up with it. Other than that, Coleman thrived. Dr. Sharma always asked if Coleman turned blue or ran out of breath or if he ate ok. Coleman was pretty much never blue, never out of breath, and ate good. He is just amazing for what he has. Every doctor has been shocked. They could hear his murmur, and knew what he had, but seemed so normal.

In September, Coleman's oxygen was getting in the low 70s at times. Dr. Sharma started talking his first surgery(what would have originally been his second, the Glenn procedure). Even though Coleman looked and acted perfect, his heart was going through a lot an needed that surgery. 

Coleman had his first heart cath procedure on September 24th. They needed to look at his heart to measure pressures and prepare for surgery. This was the first time we really went to Egleston for anything. We were scared, for him. He wasn't to eat anything before we went. That was the hardest part. He got hungry and fussy. I held him to try to rock him to sleep. We had to wait in his room a while before it we his turn. They came to get him. I tried so hard to hold in my tears. It's not easy handing your baby over. They took him back and we went to the cafeteria with our moms and waited. Waited and worried. We went back to the floor and waited in a waiting room for them to call us. They called and said he was finished and that he did good. 

We went back to see him. He looked so tired. But they said he did great. We were supposed to wait a couple of hours to be monitored and then go home. But Coleman's oxygen stats weren't having it. It would go down to the 60s, but mostly hung out in mid 70s. They didn't want us to leave with it being that low. So, we stayed the night so that he could be monitored. This was our first hospital stay since his birth. We were happy we got to stay in the room with him. The nurses loved him! He didn't need much care from them since he was only being watched, just vitals. His stats went up to around 76-84. It was always such a mess trying to get a good reading. We weren't sure if we could get to go home the next day because it was hanging out in those numbers, but happened to always be lower when someone tried to record it. A few doctors came and talked to us. They said they would be discussing his case at their next meeting the following week and would plan surgery then. One doctor started saying they could do surgery while we were there, but the surgeon was booked up and they were full. We were glad she didn't get to pick on her own lol we weren't ready for that yet since it wasn't an emergency. They decided to let us go home, under the condition that they sent us home with oxygen just in case he needed it. Yay for going home!

Coleman never needed to use the oxygen they sent us home with. Now that we were home, I was just waiting on the call to schedule surgery. Just wondering when they would call and when it would be. We followed up with Dr. Sharma and he said he was good for surgery and that we wouldn't be coming back to see him again until after. This was a little scary to me. The reality that surgery was coming. 

They called and I scheduled for November 1st. October 31st was the first available date, but I didn't want Coleman to get cut open for his first Halloween. So there's the date. How do you get ready? You don't really. 

We stayed  at my dear great uncle Spence and Aunt Janet's house the 2 days before surgery. We had pre op super early the day before. Their house is a short distance from the hospital, ours very far. (I am so glad we got to spend that time with uncle Spence. And I'm glad he got to spend time with Coleman I know he had fun taking Coleman on his first doorbell ring trick or treating. Uncle Spence recently passed away. We miss him so so much. That will always be very special time to me). 

We had pre op early on October 31st and took Coleman all over the hospital to get echoes, X-rays, blood work. We talked to doctors and nurses. It was a lot of things and we were so tired.

On November 1st we got to the hospital at 6am, like we were supposed to. They took us back to a room to prep him, and us really, for surgery. They gave him medicine to make him sleepy. I'm so glad they did. The doctor, anesthesia person, and nurse came and told us what would be going on. We waited anxiously and said prayer with my cousin and mom. Then they came to get him. I held him, squeezed him, gave him kisses and told him I loved him. Matt did the same. We handed him to the nurse and she carried him out. I followed just a little way to see her carry him away and started bawling. As I said, it's not easy handing your baby over. Knowing you can't protect them, but trying to remember this is the best thing for them. There goes my baby to have his chest cut open. 

Now we wait. We had a good bit of family that came and waited with us. I am so thankful for that. It helped keep our minds occupied and made us laugh about some things. And they were there because they love Coleman too. Not to mention before now, this boy has prayer warriors all over the place! Everyone was praying for Coleman. I remember going to the bathroom and saying a prayer while I was in there. I also talked to my dad and said, "please be with him right now while I can't be". It was a hard wait in a tiny room with lots of people to make us smile. They called and updated us every hour. Those calls were what we looked forward to. To know what was going on. Surgery took about 3 hours. That last call was the best. 

Surgery was over and he was good! Matt and I stepped out and just hugged for a moment. We sat down to talk and in came the surgeon to tell us about surgery. He said there wasn't much to say, everything went as planned and he did great! We were so relieved and happy. We told everyone and we all rejoiced. 

Now Matt and I had to wait to go back to see him while everyone left. This was something everyone warned us about, how he would look after surgery. 

Finally, we got to go back to see him. I had imagined what he would look like to get myself ready, but it is sad to especially see your own baby like that. He was on a ventilator, one of the scariest looking parts. He had an IV in his neck, another somewhere else. He had monitors on his head. He had tubes in to drain his chest and wires in there too. He was hooked up to a lot. His face looked pitiful and his body helpless. His nurse, very nice, explained each thing and talked to us. We sat with him, that's all we could do. I touched him just a bit, but we did not want to bother him, so we just watched him. We eventually went to eat supper. They had taken his ventilator away by the time we got to see him again later. This was a great thing. But so so sad to hear his little cries trying to come out while he squirmed a little. They had to keep him loopy so he wouldn't move much. Thank goodness. Those sounds and faces are torturous. But we knew he was in great hands. We went to our beds for the night in the family center to get some rest. Not great beds(fold out chairs) or sleep, but it was good to be close to him. The next morning we slept later than we had wanted, but we were exhausted. Uncle Spence was there to take us to breakfast when we got up. We went to a good breakfast place and talked with uncle Spence. He got me coffee and gave me his ice (after I had said  I only drank it cold, so I didn't order any). He took us by his office and showed us around his job. He loved his job so much. Then he dropped us back off at the hospital. It was good to get out for a little while. We went right back to see Coleman. We were so anxious to see him and know how he was doing. He was doing good. He had stopped a couple of medicines and looked  more normal. We were so proud of him. My mom and cousin and Matt's mom and sister were there so we were in and out with them visiting. While I was letting Matt and his mom see Coleman, they said he would be moving to the step down unit. Yay! Huge deal. This meant he was doing really well. And that we could stay in the room with him 24/7 and have visitors. We were so happy! We gathered our things and moved them into his new room at the same time they brought him in. We met our new nurse and settled in. 

In the step down unit we learned what medicines Coleman would likely be discharged with, what dose, and when to give them. We learned any precautions about his chest, cleaning with soap and water. No lifting under arms. We got up with him when he cried. We fed him. We changed him. We woke up super early every morning for them to draw his blood while he screamed. We walked with him to get X-rays. We tried to make him happy when he was irritated, which was pretty often, he hated wearing oxygen. He was on the tiniest amount of oxygen while they were weaning it and we were so glad the final day when it was gone. Coleman was too, he was in a better mood. 

Coleman was in the hospital for four days. Only four. We had expected a lot more. We got to go home! We were excited and nervous at the same time, not having a nurse always there. His doctors were satisfied with him and said he looked good to go! We packed up our things in that little red hospital wagon and headed home!

We followed up with them at the hospital a few days later and got a X-ray. Coleman checked out good. He had some fluid around his heart still, but this was normal. That's what one of the medicines he was one was for, Lasix, to draw fluid out. 

We followed up with Dr. Sharma a few days after that. He did an echo and saw fluid in and around his heart. Still pretty normal. Not really worried.

We followed up with cardiology again a couple of weeks later to check fluids. It was gone this time! We were given instruction to cut his lasix dose and then stop it after a month. Yay! Stopping any medicine is great because it has always been such a fight to make him take it. Especially the lasix! He absolutely hated the taste of that one. We followed up with Dr. Sharma probably a month after that and he was happy with Coleman. His next cardiology appointment is scheduled for when he is 1 year old!
  And that is pretty much it since now.

Currently Coleman is only on blood pressure medicine, and probably will be for a long time. The doctor said it just helps his one ventricle work better. He also takes prevacid just for some reflux.

Coleman is doing great today. He acts like a normal child. He plays, he eats, he's on the move. He is exactly where he should be for his age. And we are so so thankful for that! Some CHD children get behind developmentally, but we have been extremely blessed with Coleman. You'd never know something is wrong with him. We will always have to watch for the rapid breathing and turning blue, anything out of the ordinary. Living with half a heart is something severe, and so crazy to think that he has something wrong just looking at how he acts and is. He is a normal kid with a faded chest scar. When we're in public and people talk to him, I tell them about his heart and how proud I am of him. I try to spread awareness of CHDs and how they can happen to anyone.
 

Coleman will need another surgery when he is 3 or older, the Fontan. But I try not to think too far ahead too often. I try to focus on now. Last year I was anticipating his surgery so much I had a lot of anxiety. I've looked forward to this year and not having to do that. We can act more normal. Coleman does get sick and we have to be extra cautious with him. Thankfully he has only had colds, ear infections, sinus infection, stomach virus, conjunctivitis, eczema; nothing that got out of hand with him. We were at the doctor at least once a week for a while though. We go to the pediatrician often just to make sure sometimes. They know us there lol, all of our doctors offices know us and they're like family. They love and care for Coleman too. Coleman's pediatrician knows Coleman and always brings his own pulse ox in just for him. I am so thankful for a great healthcare team and for modern medicine helping keep my baby alive.
There are things that we can't help but think about sometimes, about Coleman's future mostly, that we try not to think about. Doctors aren't sure of the life expectancy of these children with "half a heart", or single ventricle, as we have been told. The oldest ones being around 30. But 20 years ago, these babies didn't have a chance. There was no treatment for them. There still is not a cure, but these surgeries make it livable. There are so many advances being made medically, I am hopeful. Whatever is God's will for Coleman, that is what I have to remember. God has already blessed Coleman so much, I have high hopes for his future. He is an amazing boy. He will grow up and can do what he wants!


 We may have bumps in our road, but we have been so blessed by this miracle heart baby God gave us. He has opened our eyes to the world of congenital heart defects, something we knew nothing about before, and now know so much. We are so so thankful for how great Coleman is doing with what he has. I can't even put into words how thankful I am for Coleman. He is definitely a miracle and such a special boy. Our little heart warrior.

I hope this post helps spread awareness for congenital heart defects. I didn't know what they were before Coleman. How common they are, not always as severe and some more severe. 1 in 100. I'm happy to spread awareness and extremely proud of my son.