Love and Support

I have to make a post and write down how grateful I am for the love and support we are feeling from so many people. After letting our news set in and take it in for a few days, and getting through Christmas, I publicly posted on Social Media about it. Within a few hours, we had over 100 friends and family members commenting and private messaging me to voice their love, support, and promising to pray for us and our son. Then, at church yesterday, many hugs and words of encouragement were offered. It truly means so much to us, and helps to strengthen us at such an overwhelming time. 

My sister in law (the one who also has an HLHS son) let me know about an organization called "Sisters by Heart". I contacted them, and they have already sent me a care package of items that will be useful to myself and the baby when he is born. Being that they rushed it out on Christmas week was amazing to me. I opened the box and cried as I looked at all of the items lovingly sent to us, many things handmade or donated by other heart mom's or grandma's. 

I have been put in contact with several other mom's who have walked this road before and are offering their experience and advise. I also have my best friend, who's baby has recently been release from a 4 month stay in the NICU, following her delivery at 24 weeks gestation. It isn't a pleasant way to relate, but since we can't help our situations, it is wonderful to have others to talk to about similar experiences.  

Right now we are in the process of researching and setting up appointments to find out more about facilities at Kosair Children's Hospital here in Louisville, and at Cincinnati Children's Hospital in Cincinnati, Ohio. Kosair is wonderful, and we have heard great things about them, however, Cincinatti is ranked #5 overall in the nation, and #7 specifically in pediatric cardiology. They have a specific cardiac NICU there for post surgery. 

It is so overwhelming trying to make all of these decisions. My mind is spinning all day long. But, I know that Heavenly Father is guiding us to all of the options and will help us make the right choices for our boy. 

Christmas

Today is Christmas. Wes and I stayed up late watching, "It's a Wonderful Life" last night. It's my favorite Christmas movie. Makes you ponder life, which I've been doing a lot this week. I slept ok, but a bit unsettled, as I have most of this week since we found out the news about our baby. I feel like I am walking around in a fog, just putting on a good front. Most of the time I feel I have hidden my feelings ok, other times, I'm sure it's obvious I'm in a haze. I can't stop thinking about our baby and his future. 

This morning started out with the fun of watching our kids open all of their gifts from Santa and each other. They got all of the gifts they asked for from Santa, Bethany and Dominic got skateboards, and Tanner got his orange bow and arrow. It was a fun morning of excitement. After it was all over, we cleaned up and headed out to my parents house. We had breakfast there and my Grandma and sisters, Amy & Allison came with their families, too. 

My parents always ask for lists of things we want for Christmas and do their best to fulfill most of those wishes. This year I asked for a pricey diaper bag. I wanted the kind that is a back pack, but has a shoulder strap, and can also hook onto a stroller. I found one on line that I really liked and send them the link. I was really hoping that's what they would get me. 

As we drove to Crestwood, I started to think of that diaper bag possibly waiting under the tree for me. Oddly enough, I started feeling sad. I almost didn't want to open it because I was afraid of how I would react. I don't want to be sad on Christmas, especially in front of all of my family. We started opening gifts and it was crazy! Wrapping paper flying, kids passing around gifts, it was fun, but I was in my tired haze. Dominic brought me a box about halfway through the chaos and said, "Mom, this one is for you." This was it. It was the right size. The diaper bag. I had to open it. This is what I wanted. I feel bad, because my normal reaction would be to ooh and aah over it, go through each pocket, try it on, show it off, etc. But I couldn't. As I looked at that bag and admired it, I was secretly wondering if I'll have a chance to use it. Will my baby survive? Will I be toting his diapers, wipes, bottles, burp rags, and toys around in this bag? Or will I have an empty diaper bag and never get to use it? Will I have a baby crawling around the Christmas tree next year? Or will I have an empty spot in my heart for him? 

I don't want to come off as pessimistic. I am really, really trying to be optimistic. Really. I have hope that he will live and thrive and be as strong as physically strong as he can be. But, the possible reality is that we could lose him. In the not too distant past, this was literally a fatal diagnosis with no hope for survival. I am grateful for modern medicine and advances in heart surgery to give me hope. So many babies have had successful surgeries and are doing well, including our nephew. Truly, I pray so hard that our son will live and be strong, but it is hard to not let these thoughts creep in. I have faith that God has a plan for our son, but  I worry that that plan is not the plan I would choose for him. 

I was able to mostly overcome some of these feelings and still enjoyed a good evening with my family. I am so grateful to have a support system around me who love me and my little family, and are praying for us. I am very blessed. And, I also want to say, I came home, and this evening I opened every crevasse of the diaper bag and examined all of the awesome features. I love it! It is exactly what I wanted. I can't wait to carry around all of our baby's things. It has all that I would want and more.  So, thank you to my parents for getting me my wish! 

I am grateful for my Savior, especially this Christmas day. He chose to come to earth and live a mortal life. He set a perfect example for me and the rest of the world. That tiny babe in Bethlehem lived and died, so that we can all live again and have the blessings of eternity. I love my Savior and have faith in him and his gospel. No matter what happens, I know he is mindful of me. Merry Christmas!

The words you never want to hear

December 21, 2016. A day I will never forget. I had two appointments scheduled for the morning. My parents came over to watch the kids, as it was the first day of Christmas break from school, and I thought it might be a long morning of appointments with all 3 kids underfoot. My first appointment was at Maternal Fetal Medicine. I was sent to have an ultrasound there because the regular ultrasounds performed at my OB/GYN had failed to get a "good" picture of our baby boy's heart and they just wanted to be cautious. 

Back up several months to August 3. I had woken up early in the morning with a gush of blood. I was 7 weeks and 3 days pregnant. Having suffered 2 miscarriages before, I was certain that it was happening again. I already had a regular appointment scheduled with my OB that morning, so I figured I would just go on in and let them know what had happened. They performed an ultrasound and I was brought to tears when I heard our baby's heartbeat! Our baby was still there! I was diagnosed that day with what is called a Subchorionic Hemorrhage. I was told that I could and probably would have more moderate bleeding at times, but I was more at risk for miscarriage, and they would monitor me every 2 weeks to see if the hemorrhage was shrinking and to make sure the baby was growing. At every appointment, the baby was growing and doing wonderfully, but the hemorrhage continued to hang around. At 17 weeks we found out that our baby was a boy! We were so excited! A lot of people thought that we "should have" another girl to even things out, but we were happy with our boy and loved him already! I had several episodes of heavy bleeding, but finally, at 19 weeks, they could not detect the hemorrhage any longer. My body basically had reabsorbed it and I could breathe a sigh of relief about that. As one problem resolved, however, my doctor had to tell me that the umbilical cord was not formed properly. Instead of having one vein and two arteries, my cord only has one vein and one artery. She assured me that she wasn't too worried, this is actually fairly common, and 80% of these pregnancies turn out to deliver perfectly healthy babies. In fact, in talking to friends after the diagnosis, I learned that two of my friends had had the same umbilical cord issue and their babies were of that 80% and healthy. I was sure that everything would be fine, they would just continue to do ultrasounds and watch our baby's growth, to make sure he didn't slow or stop growing. At the same ultrasound that they found the umbilical cord issue, they were unable to get a proper picture of our baby's heart, so I had a follow up ultrasound the Tuesday before Thanksgiving to try and get a better picture. He was still in a bad position (transverse and back up), and they were unable to get the picture they wanted. My doctor, still being optimistic, said she wanted to send me to Maternal Fetal Medicine because they had more specialized equipment to get the picture she wanted, but it was only precautionary. 

Fast Forward to December 21. I checked in at Maternal Fetal Medicine, had my vitals taken, and then was placed in an ultrasound room to wait for the technician. I kept telling myself everything would be fine. I had prayed that they would get the picture they needed and be able to set our minds at ease and relax the rest of the pregnancy. I knew they were going to get what they needed. The tech came in and started the ultrasound. She measured his abdomen, his head, his legs, all of the main anatomy, but she couldn't get his heart. He kept moving and even though he was head down and belly up this time, it was like he didn't want to show us. I laid there for 45 minutes as she tried her hardest to get what they needed. She finally told me to sit up and move around and she would be back after she talked to the doctor about what to do. 

During that wait time, I started to let my mind wander. What if there was a problem? What are they going to find? The minutes crawled on and seemed an eternity. Finally, the tech and the Doctor both came in. The doctor was a very to the point, matter of fact type woman. She asked me what number child this was for me. When I told her it was my 4th, she asked if it was on purpose. How dare she. Yes, the child was conceived on purpose, with love, and we knew he was to be a part of our family, and even if having this baby had been a surprise, this was still our baby. I just felt it was uncalled for, and didn't start us out on the right foot. She told me she was sorry if she didn't talk much, but that she would "explain things in a minute". She kind of rubbed me the wrong way, but I didn't have any choice but to wait and listen to her. That's when I started to think the tech had known something before and just wanted to get the doctor to come confirm her suspicions. The doctor instructed the tech on what she wanted, pointing to the screen every so oftne, and they finally got the pictures of his heart, and the ultrasound was over. The doctor left the room and the tech said she would walk me to her office. 

As I sat there for a few minutes, my mind was racing. The doctor came in and walked around to sit at her desk. She matter of factly said the words I'll never forget and never wanted to hear. "Your baby's heart has a problem". I barely was able to to whisper, "He does?" as I tried to hold my emotions together and wait for more information. This was going to not be a big deal, right? Something simple they could fix, right? But then, she told me that our baby has Hypoplastic Left Heart Syndrome, and wrote in on a piece of paper for me. No! No, this was not happening. When she said those words, I knew it was serious. I flashed back 4 years to my nephew having the same diagnosis. I knew this was a huge deal. 

After listening to an explanation and watching her draw illustrations that just went over my head as I was carried away in my own racing thoughts, I said goodbye, and walked down the hall to my regular OB office. I was scheduled to have my glucose test and "regular" appointment with my sweet, amazing Doctor, Dr. Nett. As I  got checked in, drank the syrupy drink, and was placed in a room to wait for her, I paced the floor. Would she know already? Would I have to tell her? I didn't have to wait long until she came bursting through the door and threw her arms around me. My sweet, sweet doctor. I love her. She has been through 2 miscarriages and 2 successful VBAC deliveries of my other boys. She is the most kind, compassionate doctor you could ever ask for. I needed her after the cold experience at the specialist. She cried with me over my baby's diagnosis. Then, she had to give me more difficult news. She won't be able to deliver my precious babe because she isn't contracted to deliver at the hospital I have to go to. That may not seem like a big deal to some, but seriously, in such a hard situation, I would like nothing more than to have her there cheering me on and assuring me as she does so well. 

After the appointment, I drove home. I didn't want to show too much emotion in front of my parents yet, I wanted and needed to talk to Wes. He has been called out to work 3rd shift at UPS over the holidays, so he had been upstairs sleeping. When I got home, I'm sure my parents might have suspected something, as I quickly walked past them and muttered something, hurrying upstairs to Wes, but I just kept walking. I closed the door behind me, discovered Wes was awake, and fell into a puddle of tears in his arms. I couldn't even talk yet, so he just held me. I finally showed him the paper the first doctor had written the diagnosis on, and he sat there, stunned. 

So. Hypoplastic Left Heart Syndrome. The left side of our baby's heart has not developed the way it should, and if not treated within the first days of life, he will die. Now we have to start meeting with specialists and making plans for his treatment and surgeries. Before we got our news, I kept saying how much I looked forward to just having him in my arms because then I would stop worrying, since I have worried about so many things throughout the pregnancy. Plus, I looked forward to not feeling sick, to be able to eat what I wanted again, and to "have my body back", but now, I don't want to let him go. As long as he is inside of my womb, he is safe. I can feel him move (a lot!), my belly is growing, and that means he is growing, too. But, as soon as he is delivered, I have to hand him over immediately to doctors and nurses who I have to trust to take care of him, because I won't know how, or have the skill set. I have to trust that they will do what is best for him and save his life. I won't have control over his well being anymore. I just want to keep him with me and not let him go. 

We have just started our journey and have so much to learn. There are so many questions I don't have the answers to. I do find hope in our nephew. He has had 2 successful surgeries so far, and will be 4 years old in February. He is a miracle, and we pray that his cousin--our son, will have similar results. 

I know that this little boy was sent to us for a reason. He has always meant to be ours. We had decided we were "done" having children, that 3 was enough for us. But, I honestly always felt unsettled saying it. In my heart, I knew there was one more. At the beginning of this year, I was volunteering in the temple and felt prompted to pray about it and started talking to Wes about it that night. He was hesitant. Our kids are getting older, it would be hard to go back to the newborn phase, etc. But, after praying together and talking/thinking more, ultimately, the answer was that God had one more member of our family waiting. It didn't take long for us to find out I was pregnant. We found out on July 11. We were in shock that it was actually happening again, but so excited! Our baby was on it's way! What a whirlwind it's been since that day!

We love this little boy so, so much. We are ready and willing to learn all we can and do all we can for him. It will be hard. We have 3 older children who need us, Wes is working full time and working on his MBA part time. We have faith that our Heavenly Father will guide our footsteps and bless our boy in ways we don't even know yet, and I know that he is mindful of us and our specific situation.