Journey to Meet Our Little Prince

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” – Maya Angelou. “Hardships often prepare ordinary people for an extraordinary destiny.” – C.S. Lewis.

LilyBigSisterOn the morning of October 18th, I found out we’re having a precious baby and it brought me to tears of joy!  We decided that after two miscarriages, I cannot bare the pain of loss again and so this would be the last time we will try for a little miracle, a little sibling for Lily.  So once I saw that positive test, I instantly cried and was overwhelmed with the hopes and joys of what’s to come! However, I didn’t know we were about to embark a very challenging and emotional journey to meet our precious little addition to our family.   We went in for our first ultrasound when I was supposedly 7 weeks pregnant, and all I wanted to see was a strong heart beat.  When I watched the screen, and saw an empty gestational sac, my heart sank.  It was like deja vu all over again.  I couldn’t fight back the tears, and the voice of the radiologist saying that I’m possibly just earlier than I thought, and that this doesn’t necessarily mean anything, was very faint and distant to my ears, and I just felt like these words are just from a broken record. We waited a long agonizing 2 weeks till our follow up ultrasound. To our amazement and surprise, there on the screen was our precious baby, head, hands, toes and all! He had a strong heart beat rate of My heart exploded from happiness and my tears are now of joy! As we left the hospital, I told Khoa that I bet this one’s a boy because only boys can cause this much trouble already haha.

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9 Weeks 1 Day Gestation

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12 Weeks 5 Days Gestation

After this, of course, we started planning for the future and preparing for our 2nd child’s arrival! I experienced lots of morning sickness, probably a little worse than with Lily because I ended up losing about 8-9 pounds in the first 4 months of this pregnancy, and didn’t start gaining my appetite back until 5 months into the pregnancy. However, every time I got sick, I just felt that I’d gladly puke into the toilet knowing that this is a good thing and that our baby is just getting that much stronger and bigger! The worse I felt physically, the better I felt emotional. Strange how that works huh? Anyways, it was time for our first trimester NT screening. I came into this ultrasound worry free and was super excited to see our baby again! We did the screening and the radiologist at times would make sounds like “hmmm” and then look concerned now and then. I tried not to think too much of it, until she told us that she’s trying to measure the baby’s neck again because it’s very “borderline.” She then left and gave the images to the doctor, and they came back and told us that the baby tested positive for chromosomal issues. My heart sank… What does that mean? Our baby’s neck was measured at 3.6, which is 0.1 over the normal measurement. It means our baby had a 20% chance of a chromosome disorder, but look, there’s still 80% chance that everything will be ok! So immediately after the ultrasound, they sent us next door to see a genetic counselor where she told us all the possible chromosome disorders and birth defects that our baby could possibly have, and then gave us several testing options. It was very overwhelming and hard to hear. However, we decided to do a blood test, which is just a screening test but at least it’s non invasive and safer and is 99% accurate. The silver lining from doing this blood test is that we would find out the gender of our precious baby. We would get the results within 2 weeks, so until then, we just had to focus on that 80%, and the eagerness of finding out whether we’d be having baby brother or baby sister for Lily! All we can do is try our best to stay positive and have hope that our precious baby will be ok.

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18 Weeks Gestation

2 weeks slowly came to pass, and I remember I was at work when I got the call from the genetics counselor. I picked up the phone, and she asked me where I was and if I can talk. I felt a little uneasy after hearing that…and so I stepped outside to talk, I can remember it was a nice sunny day too. She told me the results and said our baby tested positive for trisomy 18 and proceeded to tell me what that means and what to expect.  She told us most babies who do survive till birth, only live for a few hours, maybe a couple days at best, but they’ll have lots of birth defects, especially heart defects, and maybe 1% of babies live up to a year old.  Tears streamed down my face, I felt like all my hopes and dreams for our child has been ripped away from me, my heart shattered into tiny little irreparable pieces… I felt so much pain and sadness, for our baby boy.

LeoItsABoy

It’s A Boy!

We were giving the option to end the pregnancy, but we were allowed to do the amniocentesis test first, which is a diagnostic test and 100% accurate. Once we get the results from that, we can then make our final decision. Until the results came, so many questions and thoughts came into mind with so many difficult emotions to deal face.  We really wanted a son since it would be nice to have one of each, but another daughter would have been nice as well since Lily can have a little sister.  Regardless of gender, this is our baby, my son, my little miracle.  How can we give up on him just because his future is so uncertain, and would involve deep tragic pain and hardship?  We had to think about what’s best for not just us as a family, but for Lily too.  Do I want Lily to see us go through such hard times, and not fully understand what’s going, and why her baby brother is here but only possibly for a few hours and then never see him again?  Would we want to put ourselves through that heartache of having to bury our newborn?  I understand the reasons why people would choose that option, but I did not want to do anything that I would regret, and I definitely didn’t want to do anything that would lead to the unanswered questions of “what if…”.  Ultimately, we decided that no matter what the amnio test says, we will not give up on our son.   Even if I can hold him, and see him breathe and feel his warmth in my arms, just for a brief moment, the pain would be worth it.  I’ve loved him from the start, and I will love him to the end, and beyond.

I took the amnio test, and before doing so, they did another ultrasound.  From the ultrasound, our baby looked perfect!  There were no markers that showed any sign of chromosome disorders, even his neck size was perfect!  Just look at our son on that screen, moving, sucking his thumb, kicking, stretching, being so active, and normal, made my heart melt and put a huge smile to my face.  No matter what the tests says or what the outcome may be, I see him and he’s already perfect in my eyes.  It’s hard not to have our hopes up after seeing such a great ultrasound screening, but the genetics counselor told us that at this point, a normal ultrasound doesn’t mean much since 60% of these babies don’t show any signs yet.  However, it’s hard not to get carried away.  After all, I’m a hopeful person and focusing on the positive is what I do, so I allowed myself to just be in the moment and at that time, everything was just fine.

Finally another long and anticipated 2 weeks go by and I get the call.  The genetics counselor calls and tells us that our baby has been confirmed with Tetrasomy 18p, rather than Trisomy 18, and also making this a high risk pregnancy.  It is a super rare disorder with not much literature on it, and therefore we can only only wait and see how this will affect our son.  Our genetics counselor told me that because this is so rare, it is up to us to be prepared and educate ourselves the best we can, and that a normal pediatrician would not be familiar with this disorder, and therefore our baby would have to see a geneticists at a big hospital for all his pediatric needs.  The good news is that he will live longer and we can possibly have a good amount of time with him in this lifetime, and have a chance to make wonderful memories with him.  I am so so so grateful for that.  However, since the range of severity of this disorder is so broad, we can only hope for the minimal defects possible, and hope that he won’t have to struggle too much to have a happy and healthy life.  We know his life will be a challenging one, but it is up to us to make sure we do our research and provide him with the best care possible and love him and give him the life he deserves.

Leo22WksGestation

22 Weeks Gestation

So next up is the echocardiogram ultrasound, an extensive ultrasound that takes a closer and detailed look at the baby’s heart.  Due to this emotional rollercoaster we’ve been on, I told myself I’d go into this with no expectations and whatever they find, if anything, we will be able to handle it.  So after a long while with lots of silence and waiting while the radiologist did her thing, they told us that they found a few minor things.  The baby’s stomach is a little small but it’s nothing to be worried about for now.  His left hand was clenched at times, which is a sign of neurological issues, we just won’t know the degree of severity until he’s born.  Also at certain angles, it looked like there was a tiny hole in his heart, and that some of the blood vessels in his heart weren’t the right size, but if that’s the case, then the issues would be minor, nothing major.  I’m glad they didn’t find any major issues, but going from perfect ultrasound to this, it makes the situation more real.  I just hope no more issues develop, of if they do, it stays minor.  Here’s to hoping…and waiting…and wishing for the best.

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Enjoy every sunset and look forward to the next sunrise.

This journey so far has been incredibly emotion and difficult, filled with lots of joy and sadness.  I find myself crying now and then because of our situation, but then I feel guilty and sad that our son feels the pain in my heart and the sadness from my tears.  So after I go through the dips, I tell myself to be happy for him and to try to enjoy this journey and make happy memories, so he can feel how much I do love him, and how happy he already makes me, just by being there, kicking inside me, breathing, and being mine.  So, I chose to celebrate him and celebrate his process and milestones.

Leo_BoyOrGirlWe put together a little gender reveal party for our baby, and for those who couldn’t make it to the reveal, I put together this little video for them.  It’s hard to tell but it’s blue confetti.  Lily really liked to blow the confetti and see it fly everywhere and kept wanting to do it again!  I’m glad it was a fun activity for her and she even participated in the count down too before blowing the confetti!  I don’t know why the lighting is inconsistent but you get the idea!  Thanks Leilani for capturing this for us with your fancy slow-mo camera feature on your phone!

Also, here’s a video from our gender reveal celebration. Blue silly string and confetti poppers!!! Thanks Mieng for letting us use your phone for this slowmo video as well! Sorry it’s so dark…the sun was moving too fast for us!  I feel very lucky and grateful to have such wonderful people in our lives who love and care for us and are there to support us through this crazy journey.

I have my next ultrasound in a couple weeks.  Until then, I’m just going to take it one day at a time, and do things that makes me happy, to make my son happy.  I don’t understand why these things happen in life, and I don’t need to know why.  I just know that it happened, and I have to face it the best I can.  People often tell me how strong and brave I am, for making the decisions we make and for handling it the way we do.  Yet, I sometimes feel the complete opposite, LilyUmbrellaand I think that’s just human.  There’s this nice saying that goes “Strength of character isn’t always about how much you can handle before you break, it’s also about how much you can handle after you’ve broken.”  I do feel like I’ve been broken many times, from my 2 losses, and the multiple heart breaking news for our son, and I feel like my heart’s been broken many times and cannot be put back together as the darkness consumes me.  Lily is my brightest light and she is my strength.  She makes me brave and strong and gives me the will to move forward in life, with a smile on my face, and love in my heart.  Also, thanks to Khoa for being my rock and making sure I’m not going through this alone.  Soon, our son, our precious baby Leo, will be that light for me as well.  He’s already 26.5 weeks of the way there and will be here in no time!  =).  Life isn’t about waiting for the storm to pass, but learning to dance in the rain.  Without rain, there wouldn’t be rainbows.

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5 Months Baby Bump

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6 Months Baby Bump

“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up. – Stephen Hawkings

I believe in unconditional love.
My adventures with my little prince Leo continues…

8 Responses to Journey to Meet Our Little Prince

  1. Thank you for sharing your story and the beginning of your journey here. I know I am not even in the same city or even same country as you right now, but I hope you know that I am still with you every step of the way. Even when you feel weak, I see your strength. I admire your tenacity and your ability to find the silver lining that life has to offer. Your journey is not over, and will not be easy, but I do believe you are going through it courageously and gracefully. Life does not always make sense. We question why things happen to us, and how is it fair. But like you said, remember those quotes: “Strength of character isn’t always about how much you can handle before you break, it’s also about how much you can handle after you’ve broken.” I admire your spirit, and though things do not make sense right now, know that you are an inspiration. Your story will help others find the strength to see the rainbows after the rain. Love you, sis. Always have, always will.

  2. Tod Davidson says:

    Your journey is one that you both will never forget. Many people will not know what to say to you…… I say to them, pick up the phone and start off the conversation with a simple, “I was thinking about you Today” and let the conversation develop from there……. With that being said, I would like to tell all 3 you and your families that I am thinking about you and my heart goes out to all of you for what you have been and are going through. You are all very strong and we will be there for you should you need and help during this time in your life. Please reach out to any or all of us as you see fit and we will do everything we can to help out where we can!!!! Please know that you are in our prayers and we will be thinking about!!!!
    Tod Davidson

  3. Cynthia says:

    Leo is so lucky to have amazing parents like you guys! You have some really great family and friends who will shower him with so much love that he won’t know anything else. <3 I can't wait to meet this little guy! Also, the video of him sucking his thumb, priceless! And I think you should've included a clip of Khoa vacuuming the grass at the gender reveal! hehehe. Staying optimistic for all future doctor appointments. Lots of love to everyone! I am here for you!

  4. Alvina says:

    Little Leo is the luckiest little guy in the whole wide world to have the most loving parents and sister who will fight for him, love him, and shelter him with all their hearts. <3 And like you said, as emotional and challenging as things may have been – there have been equally as joyful and beautiful memories to reflect on. I can't wait to see you next month… and hopefully get to feel his little kicks like I did for Lily! I still remember you laying on the couch with me shouting "hello!!" at your belly and Khoa serenading in the background with his guitar so Lily would kick around… hahahaha!! Maybe Leo will be a good sport and give me a high five without all the extreme measures, lol! 🙂

  5. Drexelle says:

    To the darling Ngos <3

    Jackie, Leo is already touching so many lives. I'm in tears reading at how much more beautiful you, Lily and Khoa are becoming everyday with the strength God's growing in each of you and the love because of your inspiring Leo. We are praying for this amazing little boy. I can't wait to meet him. Love u all.

  6. Lisa Le says:

    Thank you for allowing us to be a part of our journey! You are such a strong woman… And inspiration to me. Thinking of you, Lily, Khoa, and Little Leo.

  7. Chi says:

    I’ve always admired you and your little family for always seeing the positive side in everything! Baby Leo is one lucky fella to have you guys as parents. He is fighting strong in there as much as you guys are! We are here for you!

  8. Mai Castro says:

    Thank you for sharing your story. As you four continue the journey, arduous as it may be, you ae surely to be blessed with strength, adversity, and always, love. Love comes in so many packages and God works in mysterious ways. If at anytime, we can assist you in any way, just gove a shout! There is already so much outpouring of love for you and baby Leo. Fight on Ngo family. We’re right here with you.

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