doctor appointments, test results, ultrasounds, and of course feelings since finding out about Coleman's heart

After seeing Dr. Sharma a lot of our questions had been answered. But hearing, "your baby has the most severe heart defect he could have" we were still very scared. It's taken me a while to process everything that is going on. I'm still processing it. I'm still emotional sometimes. I pray God takes care of our baby. But I still cry. That's our baby's life I'm afraid for. It would be wrong not to be upset about it.
After more people found out about Coleman's heart we got a huge outpour of love and prayers and support. People would tell us they're praying for us and we're on their church's prayer list. So many people have told us that and I can't even tell you how touching that is to know that so many people, people we don't even know, are praying for us and our baby. It has been heartwarming to know so many people care about us. And I think people telling me they care and are praying is the best thing anyone can do for me or tell me right now. We are blessed with a huge support system and I want to thank anyone who is praying for us! We appreciate for than you know and it means so much to us!

So continuing to appointments...
We really haven't had many appointments since then. But that same week of finding out we did already have a 4D ultrasound scheduled for Saturday. We went, our families and all, and that little stinker had his arm in his face the whole time! Sleeping like his daddy. I say he was just tired of being looked at after his last 3 ultrasounds that week. Little disappointed, but we scheduled a redo for 2 weeks away.  I have to be honest and say what I was really feeling that day. We left and Matt was excited because for a very split second we caught a small glimpse of his face and Matt thought he looked just like him. Matt asked what I thought and I started crying. I said I feel like maybe God doesn't want me to see him that maybe he doesn't want me to see him and get more attatched to him if something happens to him. Matt calmed me down and said that's not true. Matt has been the strong one through this being a great rock for me and the best shoulder to cry on. Don't get that wrong, he is just as upset as I am, but he does great at calming me down. I've told him many times it's ok for him to be upset too. And he does get upset. But I'm the more emotional one. He tried his best that day to make it a good day and to try to make me smile as much as he could. And a hug is a great thing.

My next appointment was my regular Ob visit. I saw Dr. Lake. That was the first time I'd seen him before. There are 6 doctors in the group and usually see a different one each time. He seemed genuinely concerned. He said I would see Dr. Allaire again and made that appointment for me. He said at my next appointment, 2 weeks, I would start coming in twice a week for non stress test (monitor the baby's heart rate and contractions), plus my regular appointment with the doctor, plus ultrasounds. I asked about my 1 hour glucose test results because I hadn't heard anything and wanted to be sure no news was good news. He looked at it and said the last Dr. I saw had passed me on it, but it was 1 point on the border and he would rather I just do the 3 hour just to be sure. I was fine with that. Anything for Coleman.
He said I needed to take the 3 hour glucose test that week so I came in the next day for it. Fasting after midnight. I hadn't ate or drunk anything. For the 3 hour glucose test you come in and they draw your fasting blood. Then you drink the super sugary drink and wait an hour for them to draw your blood again. Then wait another hour and draw again and then again for a total of 4 blood draws. It wasn't that bad. I drunk the drink in about a minute and was ok until the last hour. The lady had trouble finding a vein the time before so I'd already been poked a couple extra times. The last hour I went in for the blood draw and was happy I would get to go home after this one. It took a while for her to find a vein this time and she put a needle in both hands and arms before finding a spot. I got really hot and sweaty and she asked if I was ok. I said I'm just really hot. Finally she was finished and I could go. I felt so dizzy and light headed walking to the car and a little disorriented looking at my phone. But I just wanted to get outside where it was cool and eat the food I had brought with me. I sat in my car for about 10minutes and just sat and ate. I went through a drive thru for food and went home. I told my mom I'm pretty sure God drove me home because I just wanted to close my eyes. I was glad that was over!
The next day I missed a call from the Dr. office. I thought "crap I bet they're calling to say I failed my glucose test". I called them back and they said they were calling to tell me I passed! I passed! I said "Oh thank goodness! I thought you were calling with bad news!" She said my last blood draw was low (surprise suprise) and that I needed to try not to ever be empty. This was great news to me and I was excited about it the rest of the day!
We hadn't heard back from the genetics test they did at Dr. Allaire's office yet. Dr. Lake tried to call and get them, but they weren't in office. He said call them until they answer. I left them a message and it was a couple of days until they called me back. The lady said she "called to tell me the genetics test came back normal" Thank God! "and it's a boy" lol we already knew that, but I had such happy tears in my eyes! We didn't think he would have any genetic defect, but it was so great to confirm it. One little less thing not to worry about. I text Matt and told him right away.

The next day, a Satuday, was our redo for 4D ultrasound. I was nervous about whether we would be able to see him or not this time. Our familes came with us again. And my heart smiled as we saw...

 

Our next appointment was just yesterday with Dr. Allaire. Matt's birthday, and lucky or not for him he was on call the night before and worked all night so he had the day off. We were both pretty tired because I don't really sleep when he's gone. But we went shopping for him all day and had our appointment with Dr. Allaire. It was pretty short appointment and it was only to look at Coleman's growth. They looked him over and said he's growing good! Measured him weighing about 4lbs 6oz. Big boy! Dr. Allaire scheduled us an appointment to see the neonatal doctors at the hospital I will deliver at and we go meet them and see the NICU Friday.

Next appointments coming up are the non stress test starting next week. Along with regular Ob appointment.
The next week we go back to see Dr. Sharma and he will look his heart over again. I have a list of questions to ask him for the next time we see him that I add to pretty often. So that will be a good appointment.
And sometime we will be going to the children's hospital to meet the surgeon and tour there.

Also coming up are my baby showers! One this weekend and my mom having a drop in shower next weekend. I'm pretty excited and excited to see everyone :)

I have felt very overwhelemed, especially after my last Ob visit when he told me all these appointments and things I had to do. I've had to stop and cry a few times feeling overwhelmed. But I'm handling it better now that I've caught up on a few things and Matt is trying to help me not to worry about any of it. I'm thankful for a great husband! He will be a wonderful daddy.

I want to type more about my emotions and things I've been feeling, but I will make a seperate post about it.

Thank you to anyone who is reading this. It makes me feel good to know people are reading and people are praying. And it helps raise awareness for congenital heart defects (CHD)! I'll have to make a post sometime just about CHD.

Thank y'all!

the heart sinking news and what comes with it

We had our 20 week ultrasound/anatomy scan. This is where they look at every part of the baby. But most people get excited for this ultrasound because they find out the gender and get to see lots of baby. Our moms came with us and we got to see our little man for a while and we were all so happy to see. Our moms took lots of pictures where their phones. The only thing the technician said was that the way he was positioned, on his belly, she couldn't see his heart good enough. We didn't think anything of it.

At my 24 week appointment it was just a short routine appointment. They listened to his heart as always and measured my belly and told me what was going to go on at the next appointment, the glucose test. The doctor also said at my next appointment (28 weeks) I would get another ultrasound because they couldn't see his heart good enough on the anatomy scan. He said not that they could see anything wrong, they just couldn't see it good enough. He gave me the drink for the glucose test so that I could drink it at home and come in for the blood draw and appointment and not have to wait an hour there.
I was really nervous for the glucose test. I'd heard horrible things about it. And I was really scared I wouldn't pass it and I would have to eat certain things. I didn't know what I would eat if I had it. I thought "it'd be my luck I would have gestational diabetes and not get to eat what I want" I was so scared.
Matt went with me to that appointment to help calm my nerves about the test and because we were having another ultrasound. The glucose test wasn't bad at all, super quick and easy. The doctor had already seen me and did his routine. The only thing he said was my hemoglobin was a little low and I needed to take extra iron and he gave me some samples. I reminded him we were suppose to have another ultrasound to look at his heart and he put us in line for that. Me and Matt waited for that and I told Matt to watch my belly. It was twitching around with him moving all over. That's the first time he'd really seen my belly move. They called us in to the ultrasound room and we walked over to go in. I remember the lady at the desk telling the other one she would do the ultrasound "it was only to look at the heart". We went in and she did her thing. We made small talk and me and Matt were just happy to see our baby again. She looked at his heart a while and kept moving the probe all over and said she just couldn't see it all. She did look at it a while though. She finally got done and said she would go tell the doctor. I started getting a little nervous about why she needed to tell the doctor anything. Matt tried to calm me down and said it's ok. The doctor came in and said that they still couldn't see all parts of the heart good enough and that they were going to send us to see Dr. Allaire for an ultrasound and that they have a better machine and can see everything better. That's what they specialize in. Basically a level 2 ultrasound. I started getting a little panicked and asked could something be wrong and what could it be? The doctor said he wasn't sure, but that Dr. Allaire would be able to tell anything. They got us an appointment to be sent over right away. I started crying on the way out of the office. Matt was still calm and trying to calm me down because they hadn't said anything was wrong, but he was still a little bit nervous I could tell. We got Dr. Allaire's office and waited a little while before a lady came and got us and started the ultrasound. She looked at everything in great detail and told us what she was looking at. I had asked her small questions like when she mentioned the cord I asked does the baby get wrapped in the umbilical cord. I was trying to stay calm. Matt was sitting near my feet watching the screen.
  Dr. Allaire came in while she was still scanning. He started looking at the heart right away and about a minute later said that he did see something wrong with the baby's heart. My heart sunk and I looked over at Matt sadness stricken as he walked over to sit by my head and hold my hand. The doctor went on to say that the baby's left ventricle was not developed and that this was a complicated heart defect. He said he would diagnose it as Hypoplastic Left Heart Syndrome (HLHS). He said there were other things like a couple of the valves weren't developed. He was telling us so many things my brain went into override with all the information and emotions. He also told us that these type heart defect can be linked to genetic defects. I looked over at Matt and my heart sunk again even further. (For those that don't know, one of Matt's sisters has Down's syndrome). We had opted out of the genetics test at 12 weeks because we didn't want to worry about it and it wouldn't have changed anything. The doctor was giving us all of the information at once and I was in shock. I was crying. I had a lot going through my head, "Is he going live?" being the main thing. He did tell us that the baby would have to go through surgery after delivery. That there was a 3 stage heart procedure that baby would have to go through. One at birth, one at about 3-6 months, and one at 3 years. He also told us that I could still deliver vaginally, I wouldnt have to schedule an induction as of right now, and that I would be able to deliver at the local hospital still that they would transport him to Egelston, the children's hospital. Information overload! He told us we could get genetic testing done, an amniocentesis or a blood draw. We decided to go ahead and get the blood draw while we were there. We sat it small room on a couch and I cried for a while while we waited. Matt was researching HLHS on his phone and trying to be strong and calm me down at the same time, but he was upset too. I felt like we had been thrown in a whirwind and our world was coming apart. This is when the 'Why us?" feeling began. Dr Allaire set us up an appointment with a pediactric cardiologist, Dr. Sharma, for as soon as he had an opening. He said they would be able to tell us for sure everything that was going on and the positive diagnosis. Dr. Sharma's main office is in a different town, but he would be able to come to his Gainesville office just to see us the next morning.
We left Dr. Allaire's office and I cried more.This huge thing had suddenly been put on us, our baby's life was in danger. We weren't sure what all of this meant. We just knew we wanted to keep him and love him and let him be able to live his life. We were already so attatched to him and now knowing this and having to fight for his life, I'm pretty sure we're attatched to him even more. We were both just in shock and right away scared for our baby. I felt sick. I hadn't ate all day because of fasting for my glucose test. We went to Chickfila and ate. We both barely ate any of our food. We still had to tell our parents. Matt called his mom and told her while she was at work. We went by my mom's house because she was off that day. She instantly started crying and we tried being strong for her telling her he would be ok and about all the surgeries. We went home and talked and I cried and rested. But I couldn't let my mind rest. I called and told my family and texted my friends. I was very emotional. By that night I had already had so many people tell me they were praying for all of us and so many peoples support it was amazing.
The next day we were the first car at Dr. Sharma's office. We waited for them to unlock the door and went in and waited. As soon as Dr. Sharma came in we came back with him. We went in the ultrasound room and Dr. Sharma looked at Coleman's heart for about an hour. He looked at every detail of the heart so he could see exactly what was wrong. It took even longer because Coleman was being a wiggle worm. After he got finished looking we went and sat at a table with him and he explained everything to us. He had 3 print outs of hearts. He showed us a normal heart. He showed us a baby's heart, a baby's heart has holes that stay open until a few hours after birth. And he showed us Coleman's heart. He said Coleman does have Hypoplastic Left Heart Syndrome, the left side of his heart is underdeveloped. He does not have a left ventricle, the main pumping chamber. He said his mitral valve is extremely small. He said he has double outlets, the blood does not circulate like a normal heart and the blood mixes together wrong. He said his aorta is a little small. All these things related to HLHS. He said HLHS is the most severe form heart defect he could have and that it is fatal without surgery. He did say it was a little more mild because his aorta is exteremly small. He explained the surgery to us, but it was complicated so I won't even try to type it. He said at birth him or one of his colleagues would be there and that Coleman would have lines put in him to keep the holes open and meds ran. He said I would still be able to deliver at the hospital here that it wasn't an urgent right away thing because of the lines. They would be able wait until a bed opens at Egelston, within a couple days, to transport. He told us there were 2 or 3 doctors at Egelston that specialize in pediatric cardiology and one would be doing the surgery. He said recovery time varies with each baby so it would depend on him. We asked a few questions and he could tell we had already done some research and seemed more prepared for what he was telling us. He said the pregnancy is high risk now and I would have appointments more often with my Ob to do non stress test, to monitor baby heart rate and contractions, and more ultrasounds there. He also wanted us to follow up with him in about a month so that he could do another ultrasound and make sure everything is the same.  We felt like we had asked all we wanted and he did a good job explaining things. We felt more knowing about what was going on, but of course still scared.

 





 

 

 

After finding all of this out I have been an emotional roller coaster. I've been very down, especially when first finding out. I still break down now and cry. I do believe God has a plan and it's in his hands and to trust him, but of course I'm still scared for my baby. It's only natural. The best thing I can do is take everything one day at a time. We've really appreciated the huge amount of support and prayers we're getting. It feels good to know that many people care and are praying for us. We really need that.

I will update more later about more doctor appointments I've had and my test results and ultrasounds and my emotions and feelings. I wanted to get the main part of the background down tonight before bed. If I left anything out about Coleman's condition or the delivery or whole process that you're curious about, let me know and I'll be happy to answer it. I really don't mind talking about it at it. Yes, I'm emotional, but I love talking about my baby :) and I would love to help raise awareness about CHD and Coleman's condition.

A blog to keep up with me!

I have been debating starting a blog for a long time. After finding out things I decided it would be a good idea. Just had to get around to doing it! So here it is! You'll have to excuse my spelling and grammar. I'm going to be using this as kind of a jounral/diary and won't edit too much. I'm going to be letting a lot of feelings out. Another reason for doing this is so that people can keep up with things that are going on. I will try to update when possible.

This is my story and how we found out about our baby boy Coleman and his heart defect.

I will give kind of a background for those who don't know a thing about me. I'm Jaclyn. I'm from northeast Georgia and grew up here. I come from a good Christian family and glad I was raised to believe in God and the Bible. I'm an only child, an only grandchild, and I guess you can call me spoiled! My parents divorced when I was 13 and I lived with my dad. Huge daddy's girl right here. Always stuck to his hip and did everything he did. He was my best friend and all each other had sometimes. He died in a car accident when I was 16, November 17th, 2005. A lady came onto his side of the road and hit him head on. I can still remember every detail of that day. Worst day of my life. Worst thing that could have happened to me. It happened. I miss him every day and still get down and cry about it sometimes. I struggled a while with some depression. He was a great, kind hearted man and everyone loved him. I will always miss my daddy and it doesn't get easier, the emotions just get easier to deal with. This topic brings up a lot of my emotions, but I just wanted to type the just of it. This is why I have to remember 'Everything happens for a reason' God has a plan. It's difficult to think about, but it was God's plan. After he died my life was a roller coaster of ups and downs. I was very emotional and vulnerable. And I was never very happy. I dated, but never found someone to really truly be happy with and treat me right. My mom had told me that daddy was watching over me and he was getting that perfect guy to come into my life. At this time I was 19. Little did I know it wouldn't be much longer after she told me that that I did find that guy.
There's no huge love story to how I met my husband. I messaged this cute random guy who I had no mutual friend with on MySpace, Matt. We messaged each other a while and eventually exchanged numbers. I always enjoyed talking to him and it made me smile to see a text from him while I was in class. We set up a date to meet. Our first date, January 14th, 2009. We had dinner and went to the movies. I talked a good bit and he was more quiet but cute and still talked. He acted like a gentleman. It was pretty cold that day and I had told him during the movie that my feet were cold. We were the only ones in the theater but maybe one person. He got my feet and took off my flipflops and held them during the movie to warm them up. Normally on other dates I would have thought, "What a weirdo. No you're not touching my feet", but I was having such a good time being with him I thought it was so sweet of him to do that. When I got home that night I went and told my mom that I had fun and that he could even be the one. I never said that about any other guys I went out with.
Long story short, we got married July 31st, 2010 on Tybee Island, Georgia. Our favorite vacation spot. I've been married to my best friend for going on 3 years now and love him more each day! They say the first years of marriage are hardest, but I can't complain about anything. I'm such a blessed girl to have gotten this sweet, funny, kind hearted guy. He loves me and treats me wonderful and I know my daddy would be proud! And he's not bad looking either lol:). We have fun just being together and  I have no doubt we were meant to be. Meeting him is when I truly became happy.

Now fastforwarding to August 2012. We had been married 2 years and decided to try to start a family. (We do have 2 dogs. Moose, a cute little wire haired fox terrier, and Dax, a pretty hairy husky.) But we wanted to add to our family and have kids. On August 20th I took a test and to my surprise it came out positive, I was pregnant. I waited for Matt to go to work to test so that just in case it was positive, I would be able to surprise him. I went to town and bought a onesie that said 'Property of Mommy and Daddy' on it and left it in the walmart bag. When he got home I told him I got us something today and gave him the bag. He was shocked and very excited. We're having a baby. We were full of excitement and told everyone right away.
We had our 8 weeks appointment and got to see our tiny baby on ultrasound. Due date was confirmed, April 28th, 2013.

We were so excited to find out what we were having, girl or boy. We decided to schedule an ultrasound to find out early. I scheduled it on November 17th, the date my dad died. I was going to make it a happy day for me this year. It did turn out to be a great day. That day we found out we're having a BOY, Coleman Tolar. He will have my dad's first name as his middle name. Matt and I found out alone together and had a gender reveal party at Mellow Mushroom with our families to anounce to them. We had our moms open up baby boy outfits and everyone else had a wrapped up Hershey bar with HE filled in with blue, hersHEy, and a blue paint chip with his name on it. Everyone was so excited for us!

 

 

Now getting to the tough part. I will go through how we found out and everything along the way. I will try not to leave anything out because this is the main reason for the blog. Bare with me as I will make a second post...