O.N.E.

Dear Roman,

I'm not sure how to accurately express what I am feeling right now. I honestly feel like I blinked and a year has gone by already. There are so many things that I want to say to you, but I don't even know where to begin. You completely changed your Dad and I's lives one year ago, and for that we are so grateful. That first few days in the hospital with you were some of the best and worst days of my life. I don't think I have ever felt so many emotions all at the same time. I can still hear your first cry, and remember your cute little scrunched face and squinty eyes when they brought you around to me. I'll never forget the panic I felt when your Dad came back after they weighed you, and told me that you were so small, only 3 lbs 7 oz. I was so worried. I didn't get to see you after that for a few hours and oh how I longed to hold you. When I did get to see you it was only for a brief moment and you had to get whisked away to the NICU. The rest of that week was such a blur, partly I'm sure because of the meds I was on to keep my pain under control, and partly because there was so much going on with you and so many things that we had to learn.
I think almost every time I saw you in the NICU I would tear up a little, you were just so tiny and cute! Although you had come into the world under circumstances I had never expected it was still just so great to finally meet you and have you here with us.

Roman, you were/are such a strong little guy. You have such a calm temperament about you, and that came across right away. You would get soo angry when other babies in the NICU would cry for too long! haha Like they were interrupting your sleep or something. Bringing you home was honestly one of the happiest days of my life. It was so great to finally just be at home as a family :)

Roman, you have taught me so much in your short life! You have the sweetest little spirit, there is no doubt that you came straight from Heaven, and you brought a little piece of Heaven into our home. I didn't know how truly happy I could be, until you were born. You are the greatest blessing that we have ever received.
There were so many times throughout this year that I worried you wouldn't make it to your first birthday. I was so so scared that something would go wrong during your heart surgery. That is something I hope we never have to experience again. I am so glad that you have prospered since then, and continue to grow and progress.

Some of your favorite things right now: Eating! You get so excited for your bottle, and for food when we are eating at the table. You love spitting...us not so much ;) You love grabbing people's faces and trying to eat them. You love reading books, sometimes you get angry when we have to stop. You are scooting/ army crawling all over the place. You hate sitting unless you are playing with something that is distracting you. You love standing all the time, and especially lately standing and looking out the front window. You love attention! Being the only grandchild on both sides, you probably get a little too much attention.

Tonight as I put you to sleep I just couldn't help but feel so overwhelmed with gratitude that you are mine forever. I can't wait to continue to watch you grow and develop. People already love you so much, and even complete strangers will stop and say hi to you, and obsess over your sweetness. I hope you never lose that sweetness, Roman, because the world could use a lot more kindness. I love you with my whole heart! Thank you for choosing me to be your Mama.

First Family Photo

One Year Later

A letter to myself one year ago

May 2, 2014:

I remember it like it was yesterday. I was at work when I got a call from my OB office, they left me a message and asked if I would call them back. I had just gotten my blood drawn for the quad screen a couple of days before, so I figured they were calling to let me know what the results were. When I was calling them back I remember feeling a little uneasy, and my heart was beating really fast. As soon as I got connected with the nurse, she told me that my results had come back abnormal, and that Roman was at a higher risk of having Down Syndrome. I honestly think I went into a little bit of a shock, I tried not to start crying while I was on the phone, but I couldn't stop the tears from coming. She told me not to worry yet, that a lot of times the quad screen has a high false positive rate, and that I was really young, and it might be nothing. She told me I could talk with my doctor and do more testing if I would like. I hung up with her and immediately called Vong at work. As soon as he answered the phone I started crying hysterically, he thought someone had died. I told him that my doctor had called and said there was a higher chance that Roman would have DS. He told me to try and calm down, that everything would be fine, he assured me that it is not the end of the world and not to stress so much because it's not good for the baby.

I got off the phone with him, and went back to my client, I was a hot mess, she was pregnant at the time as well.. So she understood the hormones haha. I ended up having to cancel the rest of my day because I couldn't focus on anything, I felt like it was all a bad dream. I remember coming home and immediately googling Down Syndrome. Bad idea. Don't ever use google while you are pregnant. All I saw were negative things... Heart defects, short life span, a small percentage dying before their 1st birthday etc etc. I was so scared. I literally cried for 3 hours straight, until I finally stopped myself. I then started reading more about the quad screen and how high of a false positive rate it had, and that gave me hope that everything would be fine with Roman.... 

What I wish I could've told myself that day, while I sat on this same couch crying my eyes out-

I would tell myself that yes, Roman does have Down Syndrome, and that it's not a negative thing.

I would tell myself that most of my fears would become a reality, that Roman would have those common heart problems... But that he would be strong, and the surgeons would fix him right up. 

I would tell myself that I am way stronger than I could have ever imagined.. 

And I would tell myself that Roman would be the best thing to ever happen to our lives. 

I would tell myself that even though I didn't think a special needs child is what I wanted, or what I ever would have chosen, that he is exactly what I needed, and that he would change my whole world in the best way possible. 

Sometimes I look back on that day and I feel guilty and selfish for being sad that Roman possibly had DS. I feel guilty for having negative thoughts, and feeling sorry for myself, but isn't that what life is about? Learning and growing from our trials. I know our journey with having a special needs child is just beginning, and I know we will have more hard times as the years go on... But my goodness I am so thankful that Roman chose us. I'm grateful for the small and big things that have reminded me that God is right here, helping us every step of the way. I'm thankful for the people I have connected with that I wouldn't have ever known if Roman didn't have DS. I'm also grateful that I can help be a voice, and help spread awareness about DS.. So maybe when another young mom gets the news and turns to the World Wide Web.. Her search won't bring up such negative things. But instead finds all the happy things about having a child with Down Syndrome. 

Thank you Roman for opening my eyes to something bigger than myself, thank you for teaching me what unconditional love is, and for letting me be your Mom.

I love you. 

Heart Surgery

What. A. Day.

I want to write down all of my thoughts while they are still fresh in my mind! 

Our day started bright and early! Vong and I went to bed around midnight last night... Why did we do that to ourselves?! Lol prob cause we were so nervous/anxious. I woke up at 2:30 to feed Roman his last bottle of breast milk before the cut off time. We had to be at the hospital at 6 am, so I woke up at 4:30 to pump and make sure we were all ready so we didn't have to rush. 

We got to the hospital and got all checked in, it was quite the bumpin place at 6 am! I was a huge ball of nerves all morning, if I looked at Roman too much I would tear up :( he was being SO cute the entire time we were waiting.

Seriously?! I die. That little gown.

Anyways so we waited in the pre-op area for our surgeon to come and talk to us before the procedure. He finally came to talk to us and the first words out of his mouth were "Hey, I'll be doing Roman's surgery, I don't know what I'll be doing once I get in there, I'll have to wait and see." Ummm excuse me?! Hahaha I almost had a heart attack right there. Then he went on to explain that his last echo pictures were kind of shotty and he couldn't see clearly what he was working with until he opened him up. (Probably should have started with that part lol) then he got out a piece of paper and drew some diagrams of exactly what he would be doing to repair the heart, which was really informative for us. He explained the bypass machine, which I knew it obviously bypassed your heart, but I had no idea how it actually worked! So for all those people reading this that aren't medical savvy... It basically takes all of your blood out of your body, oxygenates it, and then puts it back in (which is what the heart does for your blood). Medical technology seriously blows my mind! After he explained everything he gave us a pager that we would receive updates on through out the surgery, then we signed our lives, Roman's life, away. 

Next the anesthesiologist came over to have us sign some more forms. At this point Roman had fallen asleep, seriously a God send. I was so worried he would be super hunger and just be crying right until we had to hand him over, and that really stressed me out. Luckily we have the most chill babe in the world, and he just sucked on his hand and fell asleep. 

Mommy snuggles before sending him back. 

So the anesthesiologist told us it was time, and we walked back to the doors of the OR hallway and we had to hand him over. I did a lot better than I expected I only cried for a few minutes! Haha.

Then it was the waiting game! Our surgeon told us it would take between 4-5 hours + the sedation and getting him onto bypass would take about an hour and a half. We went down to the surgery waiting room... I'll be honest it was depressing, we immediately knew we could not sit in there for 6+ hours. Luckily we had a friend who had been through a similar surgery with her little guy a few months ago, she told us about the Ronald McDonald room upstairs. We decided to go check it out. It was SO nice. They had a bunch of couches, recliners, nap rooms, showers, and a gigantic fully stocked kitchen... All for free. What?! Seriously amazing. It is out on almost completely by volunteers, so cool. So we lounged around there for probably an hour. We got our first update around 9:30 am. It said the incision had been made, and he was on bypass doing well. It was so surreal to think our little babe was just lying open on a table down stairs. Eeek. After the Ronald McDonald room we got kind of antsy and went for a walk over to the U of U hospital, that was weird to be back there since we had spent so many weeks in the NICU just a few months ago. Then we went back to the hospital and found this sweet roof top patio with tables and chairs. The doors were open so we went outside. We sat on the roof in February?! It was such a beautiful day. I just laid on two chairs and let the sun hit my face, so relaxing! By this time it was about 11:30 and we got another page saying Roman was off bypass, they had done a post-op Echo, and they were just closing him up! What?! Only a few hours in? They said the surgeon would be up in about an hour to talk to us, so we headed back down to the depressing waiting room. Seriously anyone who has been there knows what I'm talking about. It's like these weird cubicle sections so it's kind of private but not really. 

Dr Eckhauser came and told us that everything went really well. He was able to use tissue from his pericardium to patch the holes, and part of his hole had actually started closing on its own! He said he was able to successfully split his one big valve into 2. He said the right side he was able to fix perfectly, but the left valve, his mitral valve, does have a small leak. He was expecting it to have a small leak, and he said Roman can live a perfectly normal life with it like that. I cNt even tell you how relieved Vong and I felt in that moment. It is crazy to me how one minute you can feel so anxious and helpless, and the next you can feel the complete opposite, so calm and not worried. Dr. Eckhauser was seriously the nicest, and we are so glad he was our surgeon! He then told us to wait about an hour and we could go up and see Roman in the Cardiac ICU. 

We couldn't wait to get up there to see him! We walked in and this is what we saw. It was pretty intense to see him like that, but I think I had prepared myself for the worst, so it wasn't as bad as I was expecting. I thought he would be SUPER swollen, but he was hardly swollen at all. He just looked so peaceful. They had started waking him up from sedation, so he was twitching quite a bit. The rest of the day we just hung out by his bedside and waited for him to wake up. 

All of the medications Roman was on right after surgery. Yikes 

Holding Mama's hand. :) 

Caught this cute candid moment with Vong and Roman. My heart! 

Getting his breathing tube out a few hours after surgery. 

Saying goodnight before we headed home to get some rest. I originally planned on sleeping at the hospital every night, but I was so exhausted by the end of the day. The thought of sleeping on a chair sounded like torture haha. The nurse told me to go home and get some good rest, and that she was the highest paid, best babysitter we would ever have. Fact. So glad we went home. Don't worry we slept for TWELVE hours that night. 

I feel like this post is a million miles long so I will write another post about his recovery. I just want to reiterate how thankful we are for all of the support we have received. We couldn't have made it through this day without everyone's love and prayers. Most of all we want to publicly thank our loving Father in Heaven. We have seen his hand in our lives so much through out these past 5 months with Roman in our home. There is no denying that he is constantly watching over us, and pouring so many blessings on us, even if we may not deserve all of them. The morning of Roman's surgery I told Heavenly Father in my prayer that Roman had way too much good to bring people on this earth to return to him this soon, and I pleaded with him to watch over him. I don't think have ever said a more sincere prayer in my life. I'm so grateful that His plan  involved Roman staying here longer. He really does brighten so many people's days. We are so so so blessed he is in our family for eternity! I'm grateful that this day is behind us, we made it through the hardest day of our lives so far, and hopefully the hardest day we will have for a while haha! Knock on wood. Vong and I Love all of you! Thank you again for loving us, and sweet baby Roman.  

Blessed

On Sunday January 18th we finally blessed Mr. Roman! We had been putting it off because it's the sick season right now and our doctors specifically told us one place NOT to take Roman is to Church. One of our other friends had blessed their baby at home and we really liked that idea.. Except for we don't have enough space for that. A couple weeks ago we found out we could still use the church and just bless him after church! I had no idea you could do that. My mom had bought him his blessing outfit way before he was even born, we ended up having to take it back to get the New Born size, that Roman such a little peanut. 

Seriously a 3 peice tux on a baby?! (There was a jacket that went with it but it was too hot, he is such a little furnace) 

Chalkboard I made to display at his blessing. 

So we invited all of our close family and friends to partake in his blessing. It was a really special night. I kept asking Vong if he was nervous, and he said no! He really doesn't get nervous and I am very jealous. If I was the one having to give the blessing he wouldn't have gotten blessed! Haha. There was a really special spirit there and I am so thankful that we were able to bless him, Vong did a great job. We really are so blessed that Roman is ours forever! He has been such a light in our families' lives in these few short months he has been with us, and I'm sure he will continue to be a light through out his life! I was so happy my Patriarch from my home ward was able to be there. He is so special to me, he gave me my patriarchal blessing when I was 15, sealed Vong and I, and now he was able to be there for my first child's blessing! How sweet is this picture of him and Roman looking at each other.

He is probably the most spiritual, kind, loving man I know, and I'm so grateful he was there! 

The whole family, minus my brother. 

I just want to say how grateful I am to have Roman! I have learned a lot over the past 4 months. I think every time I get comfortable something has to come and rock the boat! Haha I told Vong we should just take all of our expectations of how we think our life is going to be and throw them out the window! Although I didn't expect my first child to come with so many extras if you will, I wouldn't have it any other way! I recently was added to a group on FB for parents whose kids have any sort of special needs... Sometimes I read the struggles of other parents and I am grateful that Roman only has Down Syndrome, like its no big deal at all compared to what other people are going through! I have learned so much about myself, and stepping outside my comfort zone, I can do much harder things than I ever thought! I am trying to remind myself that as we get ready for Roman's heart surgery in a few weeks. I'm trying to prepare myself mentally and emotionally. A lot of people have asked what the risks are... Or percentage of success/failure.. And honestly we haven't asked, I can't let myself fixate on the numbers like that, it's already stressful enough! The doctor told us to plan on him being in the hospital for 3-5 days after the surgery for recovery, which is not as long as I thought! Anyways I feel like I am rambling! Just wanted to give an update for all those who are wondering about his surgery, it will be on February 17th! And here are some pictures of the little tyke for your viewing pleasure :) 

4 month check up! Almost 11 lbs 

Him and his friend Milo :) 

That chubby belly! 

I think he is the smiliest kid I know! We love you forever Mr. Roman! 

Sedated Echocardiogram

Hanging out with Dad before being sedated. (He definitely did not get Vongs coloring lol) 

We went up to Primary Childrens today to get another echocardiogram. His cardiologist wanted him to be sedated this time so he wouldn't move around so much (the last one he did pretty well, but he got kind of restless at the end) I was a little nervous for him to get sedated because he is still so little :( luckily when we got there the NP said she didn't think we needed to completely sedate him, so she gave him a couple of medications to relax him, and then one to help him fall asleep. Poor guy SCREAMED his head off getting his iv put in :( it was so funny watching him fall asleep. The first medication just made him really relaxed so he slowly stopped freaking out and just stared off into space lol! 

Roman just trying to fight it of course! 

During the echo! It's pretty cool to be able to see his heart.. Technology is unreal now days. 

Waking him up after, poor guy was so out of it. 

After his echo we went over to the out patient center to meet with his cardiologist. Is it weird that I feel so at home there haha. Everyone that is there has something going on, more than half the kids in the waiting area are on oxygen, no one stares... It's nice. We met with Dr. Lal, he told us everything is looking really good. He said they won't actually have to do anything to his Aorta during his surgery, they originally thought they would need to widen it, so that's good news. We don't have a surgery date set yet. He is going to review Roman's pictures with his team and they will decide if they want to do his surgery at 4 months or wait closer to 6 months. We think it would be nice to wait so he is a little stronger, but at the same time it would be good to do it sooner to get it over with. 

In other updates we got him weighed! 

9 lbs 1oz and 20inches long. Still just such a little peanut. :) 

Atrioventricular Canal Defect

Say that 5 times fast! Who knew we would be on the fast track to get our MD while Roman was in the NICU! Ha. 

It was Roman's second day in the NICU, I believe, and I was holding him for the first time when a group of 3 cardiac specialists came in to look at him. Vong had been there the day before when they did an echocardiogram on his heart (they use an ultrasound machine to see his heart) we hadn't really heard anything back from them yet and we weren't expecting them to come see him at this time. Side note: I felt like the whole time we were in the NICU if we didn't ask something specific they wouldn't really tell us, but a lot of times we wouldn't even know what kind of questions to ask so we felt like we were kind of in the dark, especially the first week. So the cardiologists came and and started taking turns listening to his heart and talking amongst each other. Then they said they would be back in a little while to talk to us about the anatomy of Roman's heart. I started getting kind of nervous because obviously something was wrong if they had to come back and talk to us about it. They came back probably 3 hours later. They showed us this diagram of a normal heart vs. Roman's heart 

They told us that Roman was missing the wall that separates his left and right Ventricles, a partial one separating his right and left Atrium, and two valves that separate the ventricle and the atrium on both sides. Aka he is missing some very important components to his heart. They also told us that they were worried because his Aorta seemed to be kind of narrow and they weren't sure that after his PDA closed (babies have an extra valve while they are in the womb to help bypass the blood to the lungs since they don't use their lungs while in the womb)his aorta would be too narrow and his body would not get a sufficient amount of blood. The PDA normally closes a few days after birth so they had to keep a close eye on his blood pressure to make sure when his PDA closed that his body was still getting enough blood. His PDA didn't close until day 5! Those 5 days were so long and stressful. Once it finally closed they did another echo on his heart and found that his Aorta wasn't as narrow as they thought, it was just more flat on top rather than arched. The nurse practitioner told us she didn't want to scare us, but if his aorta had of been too narrow they would have had to do emergency heart surgery right away! Umm how do they even do surgery on such a small heart?! To say we were relieved and overwhelmed with gratitude is an understatement! Such a huge blessing. (They still may have to try and widen it a little bit when he gets his big heart surgery, but for now it will be okay!) 

Back to his AV Canal defect... Basically with this defect it allows extra blood to circulate to the lungs and the oxygenized and unoxygenized blood mix together making the heart work extra hard. The doctors told us Roman would need surgery to correct the defect between 4 months to a year. We just went to see his cardiac specialist at Primary Children's and we will most likely be doing surgery sometime in January! I am already freaking out about my tiny babe getting open heart surgery at 4 months old, but I am also glad that we can put this behind us so that Roman can continue to grow healthy and strong. Here are some photos from the first few days! 

We have our pre-op echocardiogram next Wednesday, so more updates coming soon! Sorry I have been so slow at updating :) thanks everyone for your love and support for Roman. It's so humbling to see how many people care about him/us. We love you all! 

NICU (Part One)

Roman was admitted to the NICU just a few hours after he was born. The whole first day in the hospital is kind of hazy for me... I blame the drugs, who knows how many I was even on! Vong was able to spend some time with Roman in the regular nursery before he was taken to the NICU. Before Roman was born I always told Vong how excited I was to get to hold Roman right after delivery... Obviously things hadn't gone as planned so I hadn't even seen him since my c-section, or held him. (Vong always joked and said he was going to grab him and run with him so he could hold him first, haha) My nurse took Vong down to the nursery to visit him and when the nurse came back I asked him if Vong was so excited to hold him... He told me that he refused to hold him because he promised me I would get to hold him first... Seriously?! Vong is such a sweet man.. You know I just started bawling when my nurse told me that... Then I felt like an idiot for crying, dang hormones. I immediately text Vong and told him to pick up that babe right now... He needed loves from one of his parents. 

This is the photo Vong sent me, his first time holding him. I still can't believe how tiny he was.

Later that night both of our families came to visit, I still hadn't gotten to see Roman in the NICU yet and I was starting to get kind of agitated. I felt like no one had really told me when I would be able to go see him. Finally they told me they would be taking my catheter out around 7:30 and if I was feeling up to it after that I could go see him.... Ummm I didn't care if I had to crawl to the NICU, I would be going to see my baby. While Vong's family was visiting they wanted to go see Roman... I said they could but I was really  bummed that other people were going to see my baby before me (maybe that's selfish but I don't care haha) well a little tender mercy happened. They went down to the NICU and the room Roman was in happened to be on lock down because there was a new baby admitted to the NICU in critical condition... So no one could go in. Then about an hour later they tried again and it happened to be shift change so only the parents could be in there during that time... They decided to just go get some food after that. During this time they had taken my catheter out and I was doing pretty well! I was able to get out of bed. Which I'll be honest hurt like a mother haha but I was determined to get up and get walking right away so my body could start healing properly. Literally 5 minutes after Vong and his family went to eat, the NICU called and said we could come see Roman. Guys I cried a little, I know my Heavenly Father knew how much I wanted to see my baby before anyone else and I don't think that it was a coincidence at all. I called Vong and told him, and he said you go ahead Mama, spend as much time as you want with him and then let us know when we can come up. I had my Nurse walk me down to the NICU.. She was shocked I could walk and didn't need a wheel chair. 

It was extremely overwhelming walking into the NICU and seeing tons of babies hooked up to all sorts of monitors :( broke my heart. I couldn't believe how many cords Roman had coming out of his little body. 

Can you believe how small he looks compared to my hand! He was hooked up to a heart monitor, had oxygen flowing, body temp probes, an IV in his hand, a blood pressure cuff on his hand and foot, and an oximeter on his other foot measuring oxygen levels. Basically his whole body seemed to be covered by something. :( 

I think that this was the point that I realized his condition was much more serious than I thought and that we would not be bringing him home with us when we left the hospital.

I spent some time with him and then I called Vong and told him he could bring his family up! They only allow 2 people in at a time so it took quite a while to let everyone see him. 

Vong's cute Mom, just so ecstatic! 

Ned! 

I just have to give a shout out to Vong's parents, they have been absolutely amazing through this whole process! Constantly asking if there is anything we need and never hesitating to get or do anything for us. Roman is so lucky to have both of our Families' love. Being the first grand baby on both sides, he is so spoiled already. 

More to come on the rest of his NICU stay. This post turned out to be way longer than I thought haha!