Down Syndrome Diagnosis

The most common question Vong and I have been getting asked is "did you have any idea before he was born that he would be Down Syndrome?" Let's rewind to when I was about 17 weeks pregnant. Our doctor offered us a quad screen [a test that screens for abnormalities in the fetus, such as Down Syndrome and also Spina Bifida] I personally didn't care to get this test because it made no difference to me if our baby did have one of these disorders, but Vong thought it was mandatory [rookie first time parent problems, lol] and he also wanted to know if something was "wrong" [I hate using that word] with our baby before he was born so we could be prepared. The test results came back pretty quickly, only a couple of days since it was just a simple blood test. I got a call from my doctor's office on a friday afternoon while I was at my salon. While my client's hair was processing I gave them a call back and I just had a pit in my stomach the whole time. The nurse told me that my quad screen had come back at a higher risk for Down Syndrome. I immediately started crying thinking that it was a for sure diagnosis. The nurse assured me not to worry too much because the quad screen has a pretty high false positive rate. How could I not worry?! She told me that the next step was to meet with a genetic counselor and we could talk about doing further testing to confirm if our baby did indeed have DS. I hung up with her and called Vong at work...bawling hysterically..he thought someone had died! I blame the pregnancy hormones. He told me to calm down, and that we weren't even positive that he had down syndrome.

I went back to my client, and luckily she is a good friend, she is in my ward, and she was also pregnant at the time so she understood the hormones! [Thanks Ashley :)] I decided to cancel the rest of my clients for the day because I just couldn't stop thinking about it, and worrying about my baby. I went home and googled Down Syndrome... worst...idea..ever! I started reading about how a certain percent of babies with Down Syndrome will die before they are 1....How a majority of babies with DS are born with heart complications...how even if they do live past one a good percentage of them die before 40....all this translated in my mind as my little precious baby will most likely leave this earth before I do..and that was just too much for me to handle. I think I cried on my couch for 3 hours straight until Vong got home from work. He calmed me down and told me that even if our baby was Down Syndrome it wouldn't matter...he would just be our little Downy Bear [I hope I don't offend anyone by saying that but it is a total term of endearment for us, and we started referring to him as our little Downy Bear from that point on, and it always made me smile when I would think about it] We then started reading more about the quad screen and how there are so many false positives.

That next Tuesday I was able to get in contact with the Genetic counselor up at the U of U. I spoke with her on the phone because I was still having so much anxiety about the possibility of our baby having DS. She looked at my test results and told me that basically we had a 4% chance that our baby was DS. That made me feel so much better! At that point we decided not to do any more testing, because an amniocentesis had a risk of miscarriage, and it wasn't like we were going to abort our baby if he had DS anyways.

Later that week we went in for our Anatomy/formal ultrasound. Everything looked great! Mr. Roman was growing just as he should be, he had all of his fingers and toes...His heart looked great had all of the chambers....or so we thought! [More to come on his heart diagnosis in the next post] so we were confident that our baby was just fine, and we were mostly concerned with all of his vital organs so it really put our mind at ease that everything looked good. We decided not to really tell anyone about the possible diagnosis because we didn't want everyone worrying about it until we knew for sure.

The next couple of weeks were a definite growing experience for me personally. Even though everything had went well on our ultrasound, I still had this little nagging in the back of my mind that maybe Roman still could be Down Syndrome. I was working part time at The Kura Door, and all of a sudden I kept having clients come in and we would start talking, and they would some how bring up their kids..and I had about 3 clients in 1 week that all had a child with Down Syndrome...and they would tell me just how special they were, and how much love and happiness they brought to their families. I also had the head of the Genetic Counseling center at the U as one of my clients that same week. Coincidence? I think not. I know my Heavenly Father was trying to prepare me...of course at the time I was trying to deny those feelings.

At my next doctors appointment my wonderful doctor told us that if we didn't want to get more testing it was completely up to us! She would just keep measuring my uterus each week and as long as it was on track growth wise, we wouldn't do anything extra. It can be common for Down Syndrome babies to slow down in growth towards the end of pregnancy, so if my uterus was getting behind she said we would do more ultrasounds, and also keep a closer eye on his heart, because they can have heart complications as well.

Fast forward to birth of sweet baby Roman. He was so teeny tiny. Only 3 lb. 7 oz. I was only a week and a half early so there was a lot of concern with his size! With my abnormal quad screen showing a high risk for DS they immediately drew his blood to do a Chromosomal analysis. [Side note: When they first brought Roman over to me I whispered to Vong..."is he Down Syndrome?!" I was really drugged at the time haha but I obviously was anxiously waiting to know what the future had in store for my sweet little boy] We didn't get the results back and get a for sure confirmation that he was DS until Friday [3 days after birth] but Vong and I already knew from the first day :) I'll be completely honest I am terrified of the long road we have ahead with our sweet boy. But we have seen so many miracles already and we can see the hand of the Lord blessing our baby every single day. I'm not sure why our Heavenly Father thinks we deserve such a gift as our perfect Roman, but I am so grateful to know that he has sent us one of his most precious children. I'm so thankful that he trusts us to raise him in this earthly life. He has already brought our families so much joy and he is loved by so many people already, we are so blessed!

Very First time Holding him for 1 min
before they took him to the NICU

Finally seeing him after more than 12 hours :)

Roman's Birth Story

Monday September 15th 2014:
I got home from work around 4:30 pm and I was having terrible back pain! This wasn't unusual after standing at work for 8 hours so I didn't think much of it. I laid down on my bed to try and relieve some of the pain. After a little while I started having some back cramps that would slowly travel to my lower abdomen. This was something new that I had never felt before...so of course I googled it! Every symptom I was experiencing were the symptoms of back labor! This was the first time my whole pregnancy that I had even had a contraction. I hadn't even really had any Braxton Hicks contractions from what I was aware of. My contractions weren't super bad so I figured I had just over done it that day and that they would go away after laying down for a bit. Vong got home from work around 6:30 and I told him I thought I was having some contractions, and they had been pretty consistent since I got home from work. [[Over the weekend Vong had kept talking to my stomach and telling Roman he needed to come out and play...and I kept telling him to stop saying that. ha!]] Vong got kind of nervous and told Roman he was just kidding and he couldn't come out yet! After dinner we started watching Sons of Anarchy...we had been binge watching the last season all weekend so we could be caught up to the current season on TV. We had 3 episodes left until we were caught up and we just had to finish that night! While watching TV I started timing my contractions and they were consistently 5 minutes apart and about 30 seconds long. By the time we finished all of the episodes I had been having contractions for about 5 hours, consistently 5 minutes apart. I read online [what did people do before google?!] that if you are in labor your contractions need to be 3-5 min apart max and 60-90 seconds long..mine weren't quite long enough so I figured I probably wasn't in labor haha.
We decided to go to bed..I took a Benadryl to try and help me fall asleep faster. My contractions were still about 4 minutes apart and getting more painful...I would almost fall asleep and then one would hit and I would jump out of bed and walk around to try and distract myself from the pain. Poor Vong trying to fall asleep while I keep jumping out of bed every 5 minutes! haha After about an hour of this game I decided to call labor and delivery to see what I should do. They asked me how far apart my contractions were and how painful they were. She said I could come in and get checked if I would like. I realllllly didn't want to go the hospital and get sent home...after all this was the first time I had even had contractions there was no way I could be in labor. I tried to lay back down for a little while but couldn't get comfortable, so I told Vong I was going to take a shower [my hair hadn't been washed in 4 days...and there was no way I was going to give birth with dirty hair lol] Vong was delirious and so confused why I would be taking a shower at 2:00 AM..I told him not to ask questions. After my shower my contractions were only a minute and a half apart and about 40 seconds long....uhhh yikes! I woke up Vong and told him I think I really am in Labor and we should go to the hospital.

We got to the hospital just after 3:00 am. We went up to labor and delivery and got all checked in. Of course while we are checking in I didn't have any contractions... but I told the nurses I was still having them. They got me all checked in and had me change, so they could see if I was dilated at all. Turns out I was dilated to a 3! Which was surprising because the last time I had gotten checked at my doctor I wasn't dilated at all. The nurse told me that they couldn't admit me until I was dilated to a 4, so she was going to monitor the baby's heart rate for 20 minutes and then I would have to go walk around the hospital for 2 hours...2 hours?! She hooked up the monitor and left the room...about 10 minutes later 3 people came into the room, one of the nurses told me that Roman's heart rate was dropping significantly with each contraction so they were going to admit me to labor and delivery right away so they could monitor him more closely. Honestly Vong and I were a little in shock because we were thinking we would just get sent home, and that there was no way I was really in labor. All the nurses started bustling around the room, put an IV in my arm, and got the bed ready to wheel me away. Once I arrived in my labor and delivery room they hooked up more monitors for the baby and asked me if I wanted my Epidural right away. We had only been at the hospital for maybe 30 minutes at this point and I wasn't sure how long I would be in labor for and didn't want to be numb all day. I asked if there was another option to help manage the pain and they said they could give me some meds through my IV. I opted for that option...bad idea. Didn't do anything for my pain, and it just made me so tired and groggy! About 15 minutes later they came in and told me they needed to give me my epidural now because there was a good chance I was going to have to get a C-Section if they couldn't get Roman's heart rate under control. The anesthesiologist came in and gave me my epidural, but before she could hook it up to the continual drip she got called out to an emergency C-Section..she apologized and told me she wasn't sure how numb I would get with the dose she gave me, but she would come back as soon as she could to finish it. Well just my luck, the numbness only went half way up my thighs, so I could still feel my contractions and I couldn't move around very well cause my legs were numb!
About 30 minutes later Roman's heart rate was getting worse with each contraction so they checked me again and I was already at a 6! They decided to break my water and see if that would help him at all. They then inserted a Vaginal heart monitor and hooked it to his head so they could get a more consistent accurate reading. Shortly after this the anesthesiologist came back and finished my epidural, and at the same time they decided they needed to give me a shot to stop my labor because it was putting too much stress on Roman. They told me we had to do a C-Section because the contractions were just too much for him and they were pretty sure the cord was getting pinched with each contraction. We then waited for the Doctor on call to get there and they took me back for my C-Section. I was still a little out of it and I was having a lot of anxiety. Everything had happened so quickly, we had only been at the hospital for 4 hours...fastest 4 hours of my life!

Vong was able to come in after they prepped me for surgery and it was so nice to have him right by my head. Being awake while your abdomen is being rummaged through is the strangest thing ever! The U of U is a teaching hospital so there were residents and other students participating in the operation. It didn't help my anxiety to hear them talking through the whole process haha. "Oh be careful...don't cut too deep...oh that's her bladder...etc" uhhhh yeah freaked me out! If I ever have to get a c-section again I already told Vong I want to be put to sleep :/. The c-section was pretty quick, they got him out and he immediately started screaming! His cord was wrapped around his neck really tight 3 times! No wonder is poor heart rate was dropping so much during my contractions. Such a blessing that they decided to do a C-section. Vong was supposed to cut his cord but when they saw how small he was everyone was concerned and just got him cleaned off and wrapped up as fast as possible. They brought him over so I could see him before they took him to the nursery. He was wide awake and content. He had already stopped crying :)

Vong left with Mr Roman to go get weighed and cleaned up all the way. They put all of my insides back...and stapled me up. Vong then came back in and told me that he only weighed 3 lbs 7 oz at that point I was really concerned and confused because he was only a week and a half early, and should have weighed a lot more than that! [More to come on his size]
 It really was love at first site, and we fall more in love with him every day :)

Mr. Roman on the Scale. He looks like such an old man haha!

Sorry for such a long post! More coming soon on his Diagnosis. Thanks for stopping by and following along on our journey :)