This is the story of 1 amazing little girl, and how she has changed our lives…forever. She continues to change our lives every single day. Maybe she’ll change yours too.
October 11th, 2013
I wasn’t feeling the greatest. We had just gotten home from a wedding rehearsal for our friend. I was to be in the wedding the next day. I thought it was the 1 glass of wine I drank while I was there. I told Kevin that I thought I was pregnant the couple weeks before that. I took pregnancy test after pregnancy test and they all came back negative. No big deal right? I mean, how many couples get pregnant the first time they try? But for some reason, I just needed to take another test that night. And this time, it came back positive – I barely had time to set the test on the sink. I was so excited and nervous (I had just had a glass of wine!) I asked my husband to go get another test, just to make sure. We laughed, we cried, we were overjoyed! My dream was coming true. I would FINALLY get to be a mom!!!
February 3rd, 2014
We found out we were having a little girl. (We had named her ‘Poppyseed’ as a nickname around 4 or 5 weeks because that was how big she was). Now to come up with a real name! And wow – everyone had opinions! The pregnancy was going smoothly and every day I was thankful for the life inside me. Everything was amazing. I finally had this amazing husband and I was pregnant with an amazing little girl! Don’t get me wrong, I was scared shitless! I felt like I was having a boy the whole time, so my first words were ‘we’re so screwed!’ and my husband’s first words were ‘I have to get a shotgun!’ while we were at the ultrasound. Haha! Everything looked normal and we were told we had a happy, healthy baby in there. Due date was June 21st and baby was right were she needed to be.
May 23rd, 2014
Kevin and I went out for a fancy steak dinner at the Chophouse – our favorite. This was our 36 weeks mark. We knew the baby could come any day now. I ended up going in to false labor and we spent the night in the hospital waiting for things to progress, but they didn’t. A bag of IV fluids and a tired/stressed out husband later, we were on our way home. We were so disappointed because we were so ready to meet our little Miss!
June 7th, 2014
I had set up an early Father’s Day gift for my husband, a golf outing with 3 of his friends. I gave him some small jewelry boxes with clues in each one. In the end, he knew he was going golfing and where, but had no idea who he was going with. He was so excited and that made me extremely happy. He went to bed around 10 or 11 that night, on the couch. He had been sleeping on the couch for about a month. The same amount of time that I had been sleeping in a recliner due to a pinched nerve in my neck. I was unable to lay flat and he didn’t want to be far from me in case I needed him. I finally fell asleep that night around 11:30 and around midnight, something happened that woke me up. I felt a pop and sat up quickly, then proceeded to ‘run’ to the bathroom. I say ‘run’ in quotes because let’s face it, a pregnant woman who is due in 2 weeks does not run…they ‘run’.
My water had broken and all I could do was sit on the toilet and call for my husband. My husband that was so far away that he couldn’t hear me. So I sat there for a bit, wondering what to do, then figured it out and went out to the couch to wake him up. I said, ‘Honey – I’m really sorry, but you won’t be able to go golfing in the morning’. All groggy he says ‘huh?’ To which I reply, ‘I think my water just broke.’ I’ve never seen him sit up so fast in my life! After a few phone calls to the hospital/on call nurse/etc. we were on our way to the hospital. I had to text the guys and tell them they were on their own for golfing. I felt terrible! (In hindsight, this is very funny to me. I was apologizing for going into labor.)
After 15 total hours of labor and just about 2 hours of pushing, our perfect little girl entered the world. I unfortunately didn’t get to hold her for about 45 minutes because they had to check her out right away. The doctor had used suction to get her out (for a few seconds, literally) and she had pooped at some point on the way out so they were checking her lungs to make sure she was ok. Then I finally got to hold her. My precious little girl. She looked so Asian to me. She was very puffy from all the pushing and she had the typical flat Asian nose. The next day she was a lot less puffy, but still looked very Asian. She is 1/4 Korean so I had no idea what to expect since my sister’s kids hardly look Korean at all. This is when life started for us. This was our family now. I HAD MY VERY OWN FAMILY. And I couldn’t have been happier.
Then it was like it all fell into place. She started gaining weight and we fell into a routine. I ended up exclusively pumping because that is what made her happiest and what ended up working the best for our family. She was rolling from front to back at 4 weeks. She was smiling, sitting up, ‘quiet’ laughing, sleeping well, eating solids, everything was happening at a ‘normal’ pace. She was so perfect! Life was so good!
Then her first ear infection showed up. If you follow my blog, you probably read about her ear infection and the horrible reaction to the antibiotics in this post. The Monday after that post (May 11th), when the hives were gone, we had her checked out by an ENT (Ear, Nose and Throat) doctor to make sure that everything was ok before she got on an airplane. I couldn’t make it to the appointment because I had to work, so my husband took her by himself. We didn’t get to pick who we wanted for our ENT, we just got the first one that was available. So my husband went, and when he got home, he explained to me everything that happened. The doctor walked in and said Hi – I’m Dr. *((&^^E* – took 1 look at Leilani and said, ‘Oh, I’m assuming she has Down Syndrome?’ Then he kept talking. I had to stop him and say, ‘WAIT WAIT WAIT….WHAT?’ First he asks that, then after my husband says no he asks if the mother is of Asian descent. When he says yes, the guy apologizes profusely. Like WHAT THE ACTUAL F&^#?! Who says these things? And LOOK AT THE DAMN FILE before you walk in to see a NEW patient. I was livid. My face probably turned all sorts of shades of red and I wanted to punch something. As I was finally calming down, my phone rang. It was Leilani’s pediatrician. She wanted to talk about what this doctor had said to us. She informed us that he told her that Leilani had very narrow ear canals and that was also a red flag for Down Syndrome but that she had zero concerns with Leilani because she was hitting every developmental milestone. She also said that the delivering nurses had some concern when she was born but by the time she saw Leilani she wasn’t concerned because she’s Asian (the flat facial features in Asian babies can get confused with Down Syndrome) and because I was tested while I was pregnant. I was pissed off all over again. Why didn’t ANYONE tell us there was concern?? Not one person said anything to us! And then I had to tell her that I didn’t get tested when I was pregnant. Because that was our choice and we chose not to get tested because it didn’t matter to us, we were going to love this baby no matter what. So my next words…NOW WHAT? How do we test her? How can we know for sure? We were told it was a simple blood test. And since she had to get her blood drawn for her lead levels and iron levels before her 12 month appointment anyway, she just added that test on.
May 22nd, 2015
The day we had to take Leilani in for her echocardiogram to see where her heart murmur was at. It was also the day of the blood draw. Her cardiologist is amazing. He looked at everything and told us that she had a super healthy heart and that there was a tiny pinhole in the lower chamber of her heart left. He was certain that it would either close up on its own, or she would die a very, very old lady with a small pinhole in her heart. What amazing news. Like a brick being lifted from our shoulders! We mentioned the Down Syndrome test and he said that her heart was in great condition and there were no red flags in his opinion. We had already started telling ourselves that there was no way she could have DS because she started crawling on Monday (the 18th) and she was growing so fast and improving developmentally at a great rate! So we left after making a follow up appointment in 1 year and made our way to the lab. We did the blood draw and took our sleepy baby home. (She was sedated for the Echo). Here started the waiting game.
I don’t know about you, but I eat when I’m stressed. So I ate, and ate and cried at night and worried about my baby every single minute of every single day. What if she has DS? What does that mean for her future? How can this be happening? I walked around in a daze for 10 days before we finally got the test results back. 10 days! You would think that they could have rushed this or something. Then we got the phone call from her doctor.
June 1st, 2015
Her doctor called at a time that Kevin should have been home from work, but he got held up and was about 15 minutes behind. So she told me the results even though he wasn’t with me to hear them. ‘Leilani has Down Syndrome. She has what is called Trisomy 21, the most common one’. She was shocked. I was shocked. There was a ringing in my head. I started crying. The only words going through my head were ‘HOW IS THIS POSSIBLE?’ And then Kevin walked in. I put her on speakerphone and she repeated it. I think he knew from the look on my face but once she said it, his face dropped. We asked what our next steps were and where do we go from here. She told us she would email over some things for us to read and how to get more information. We were to set up an appointment with the Down Syndrome Clinic and since we already went to a Cardiologist and an ENT, we were ahead of the game. The next steps were to do another blood draw to check her thyroid out and set up an appointment with a pediatric eye doctor. Information. Overload. I hung up the phone and just stared into space. What just happened? Kevin and I went through the motions for the next few hours. Got Leilani fed, put into pj’s, read her a story, gave her a bottle and she went to bed for the night. And then all we did was talk. We talked about what made us sad, what we were going to do, etc. I made him promise me that we would NEVER be the couple that ended up divorced because of health reasons with our child. We laughed, we cried, we wondered why us? And then I started doing research. When we finally went to bed, I was so tired from crying but I just couldn’t fall asleep. And then when I did, I tossed and turned and ended up waking up crying in my sleep. I finally got up and got ready for work. I had to go in, my boss was out of town and I needed to save up my vacation days that I had left for future doctor appointments. So I did.
I sat at my desk and tried to work to take my mind off of things, but the tears kept coming. No matter what I did, I couldn’t stop them. I read some things that just made me sad. I’ve always wanted to be a mom. ALWAYS. And my daughter may or may not be able to have kids. And when she does, she has a 50/50 chance of passing on Down Syndrome to her kids. That still makes me sad to this day. What if she’s like me and that’s what she wants most in life? Anyway, my co-worker came in to tell me something and she stopped and asked what was wrong. I burst into tears and told her everything. Thank God she was there that day and walked into my office. She even took me to lunch to get me out of the office that day. If it wasn’t for her, I don’t know what I would have done! I got to talk about it to someone other than my husband and it felt good. And it also felt good to talk to someone who also had/has health struggles in her family. She didn’t make me feel like she felt sorry for me, or awkward at any point. She made me feel like I had a true friend that listened and supported me. I so needed that and will forever be grateful to her for that day!
June 5th, 2015
Right as I was walking out to go pick up my lunch, that I had already ordered, my phone rang. It was HR calling. I was hoping it was the answer I was looking for my question that I had asked earlier that day, so I picked it up thinking it would be a quick answer. I was asked to come to the office right away. In the office was our new boss and the HR lady. I was told to sit down and then informed that my position had been eliminated. All I kept thinking was, ‘You have got to be kidding me. This is a joke. Now? Really, now? What else could go wrong?’ I’m not going to say much about this, except that when new people come in and don’t even TRY to get to know their employees and then make decisions like this, it’s just bullshit. I have no other words for it. Oh – and Karma is a bitch. You’ll get yours. That is all.
June 7th, 2015
Leilani’s Dol Birthday Party! Family came in to town, the weather ended up being great and we had a successful first birthday party for our little girl. She had a blast and was of course spoiled.
I end with this – because this is very important to me. There are people that will be mean to my child and call her names because of her “disability” (whether to her/our face or not). I use quotes because she isn’t letting her disability stop her from anything, so you shouldn’t either. For the sake of our future, please do some research on what DS is. There are mild cases, and there are severe cases. Either way, it doesn’t define who they are as a person. They are still people, just like you and me, and they have feelings too. Please teach your children to be compassionate to others, whether they have a disability or not, whether they have the same colored skin or not, whether they believe in a certain religion or not, etc. Children don’t treat others differently until they are taught to do so.