Home is wherever I am with you.
Since the last update, a lot has happened. After a few days of making such progress, on Friday June 26th, Leo started to slow down on his feeds and started to finish only half of his bottles and sometimes less. Friday night he even had to gavage one of his entire feedings because the nurse thought it would be best to give him a break and let him rest. I felt saddened by this because I feared he would be regressing again and the prospect of him coming home was within reach and now I felt like it’s so far away again. I also felt like because of his move to the new room, maybe the new nurses aren’t as familiar with his situation and decided to go easy on him rather than trying harder to see what he’s capable of. Overall it was just very frustrating. The next day he continued to do about half or less than half his feeds and he would just be unmotivated to continue eating. The GI doctors told us the next day that they will reconsider the gtube again and that on Monday they will have a meeting to schedule the surgery and plan a course of action for Leo.
Hearing that made me devastated because of my hope for my little Leo to be home keeps getting bounced around and I can’t seem to get a firm hold on it. I didn’t understand why he suddenly didn’t feed as well, there could have been many variables and many reasons, but I had no answers. The unknown is frustrating and the unknown of the future is even more frustrating and stressful. All I knew was what was happening at the current moment and I wish I could do something to help him, but I felt so powerless. How could he go from almost removing his feeding tube to the possibility of a gtube? It’s so hard and stressful. I wish I can take away his struggles and give him the best life possible. I know he’s doing the best he can though, so I am proud of him regardless.
Here is a video of Leo (3 wks old) smiling in his sleep! His arm broke free from the swaddle too and he just looks so cozy and comfy. I can watch him sleep all day. I bet he’s dreaming about coming home to his mommy! He looks so happy and peaceful; it warms my heart! I love you Leo so much!
Sunday he continues to take less than half his feeds, but then come monday morning, he finally finished an entire bottle again!! My dear Leo, you are so unpredictable and sure like to play with your mommy’s emotions! He then continued to finish more than half his feeds and finished a couple more bottles on his own! One of the GI doctors came by and asked me how Leo was doing and told me that Leo’s feeding tube is probably very uncomfortable and told me I should just pull it out. I thought he was joking, but he said he was serious and that he doesn’t need the feeding tube anymore! I was in shock and asked “Are you sure…right now?” So he went to confirm with his Neonatologist (Dr. Bixby, also from Hoag!) and a couple hours later, I got to witness them take Leo’s feeding tube out! It was really quick, only a few seconds once they got the tape removed from his cheek, but those few seconds made such a big difference in Leo’s accomplishment as well as his comfort. I was so happy for him and in disbelief at the same time! They’ve been telling us that he had to finish all his bottles for at least 48 hours before he can have the tube removed but he only did it for maybe half a day and the tube is now gone…I’m so confused but I will celebrate anyways!
The next few days, the plan is to have him on a quota where he needs to finish a minimum amount of milk by the end of each shift (12 hours). If he keeps this up for a few days, then he can come home, and if he’s unable to reach his quota and start to slip again, then they will schedule the surgery for the gtube. I like the quota system a lot better because if he doesn’t finish a bottle in one feeding, he’s given the chance to make up for it in the next feedings. This seems much more natural and a lot less stressful and pressure for him to finish. Leo did really great and surpassed his quota each night and we started hearing talks about Leo being discharged! It’s a good sign when they start giving you papers to sign! Dr. Bixby (one of his Neonatologist) said that Leo’s weight gain isn’t where it should be on the curve, but that could be due to his underlying chromosome disorder, but as long as he’s making his own progress then it’s ok, and it won’t keep him in NICU longer than necessary. His pediatrician and genetecists with be monitoring his weight gain once he’s out of NICU. As of Thursday July 2nd, he weighs 6 pounds 3 ounces!
On Thursday, the nurse told me that the GI specialists feels like there’s no need for Leo to be in NICU anymore but the Neonatologist on call, Dr. Sun, wanted to give Leo another day to make sure he’s feeding consistently. The nurse started to check things off the list to get ready for discharge and had me sign a couple documents too. I had to make sure I didn’t get too excited due in case something changes. The emotional rollercoaster I’ve been on have been crazy and so I wanted to try to keep my emotions in check and not get too carried away. However, all I can think about is the possibility of my Leo coming home the very next day. Well, it is now Friday and we came in and the nurse said Leo will be discharged today! The word “discharged” has never sounded so good to me ever!! Haha! I still tried really hard to keep my cool, I’ll jump for joy once I leave the hospital with him by my side. The nurse went over some documents and things we need to follow up on once we leave the hospital, and we finished signing all the discharge papers. After he leaves the hospital, we just have to do his hearing test (since he failed it in his left ear) and bilateral hydronephrosis ultrasound follow up (due to fluids in his kidney) follow up along with his usual pediatrician and geneticist appointments. We had to wait for his medication to be filled at the Choc Pharmacy and then a volunteer will take us and Leo down to pick up his medication (Prevacid for his reflux) and then we can go home from there! We got to take off all his leads and wires, he was finally free! I put his Little Ass Kicker onesie on him that I purposely bought for this occasion, and then we waited. It was an anxious wait but after a half hour, the volunteer finally came. We had to put Leo in his carseat and then we put that in the wagon that the volunteer will use to transport Leo. We got down to the basement level where the pharmacy is, and while waiting at the counter to pick up Leo’s medication, I got teary eyed because I can’t believe this is happening, and that my Leo is finally coming home! Once we got to the parking lot, we got to put him into the car and we were ready to go home!!
He was so alert during the whole transport to the pharmacy and then to the car. It was so cute because he was so calm and just sort of looked around at all the new surroundings. I realized that he hasn’t really seen much of the world besides the NICU and the hallways of the hospitals and inside an ambulance. I can’t wait to show him all the wonders of the world and go on many wonderful adventures with him. I sat in the back seat next to my precious Leo and held his tiny hand and watched him slowly fall asleep. We started our drive home and I just got so overwhelmed with happiness that tears started to flood my eyes and stream out of my eyes, I started to cry tears of joy. All my feelings of anxiety, stress, and worry just came pouring out of me and I felt a renewed sense of relief, serenity, and happiness. My heart feels so much fuller and so much lighter. I still can’t believe that this day is finally here. I waited 27 long hard days for this day. It’s been such a rough, crazy, and emotional journey. I’m just so happy that I can finally start living my life with my Leo. I’m so proud of my little prince, he is such a brave little fighter. He’s definitely beating all the odds and will continue to leap over hurdles and show the world how amazing he is for the rest of his wonderful life. I love you so much Leo, you make me and everyone around us so happy! Welcome home my sweet precious Leo!
My heart’s at home when my hand is holding yours.
“The greatest battle is not physical but psychological. The demons telling us to give up when we push ourselves to the limit can never be silence for good. They must always be answered by the quiet, the steady dignity that simply refuses to give in. Courage. We all suffer. Keep going.” – Graeme Fife
For Leo’s first week of life, he suddenly stopped feeding on his own and had to gavage feed since he wouldn’t take the bottle. He would be wide awake and alert but after we do his mouth and gum massage, we would put the bottle in his mouth and he wouldn’t nipple and would just spit out the milk. He was having a lot of emesis (vomiting) and so we thought maybe the acid from the vomit was causing irritation in his esophagus. So they doctors put him on medication, Prevacid, once a day to help with the reflux. They said it should take about 3 days to take into effect. For the next few days, Leo continued to not feed on his own and he started to lose weight. He was able to gain up to 5 pounds 8 ounces but then went down to 5 pounds 2 ounces in a few days. He was also having a lot of residuals (food that didn’t get digested yet) in his stomach, almost half his feedings, so they would subtract that amount from the full amount of milk he needed to take in the next feeding, and feed him the remainder. That also caused him to lose weight since he wasn’t getting the daily minimum amount of calories needed. To compensate for that, they changed his formula to a higher calorie formula to 24 Cal instead of 22 Cal. They also expanded his gavage time to 90 minutes to give him more time to digest his food, but he still continue to have emesis with almost each feeding. It’s painful to watch him gag and throw up with each feeding. I feel helpless being unable to stop the vomiting from happening and stop the pain he’s feeling. They also redid his hearing test and he passed in the right ear but failed the left ear so he will have to have a consultation to retest his hearing in a couple months. A couple days before being 2 weeks old, he got a blocked tear duct in his right eye as well, but it looks worse than it is. We just have to massage the tear duct to drain it out and occasionally wipe the mucus off and it will clear up in a few days. My poor baby just can’t catch a break. Also, since he hasnt improved all week, a GI Specialist from CHOC (Children’s Hospital of Orange County) decided that it would be best to have him transfer to Choc where they can have a feeding team work with him 6 days a week (rather than 2-3 times a week with the occupational therapist at Hoag) and have a little surgery to put a peg/g tube (percutaneous endoscopic gastrostom or gastrostomy tube) in him to help him feed longer term, especially for supplemental feedings at home in place of the ng tube (nasogastric tube/nose feeding tube). My poor Leo, he’s going through so much right now, but he is such a trooper.
On the morning of June 21st, I got a call saying they want to transfer Leo to Choc that day so that he can have the whole day to settle in and get comfortable at Choc before they do all the tests and scans on him on Monday. The transportation crew from Choc arrived around noon, which was right at one of his feeding times, and so they strapped him into his intense travel pod and took him into the cute Choc ambulance and carefully drove him over to Choc. We thought they were going to gavage feed him during the drive over to Choc, but they didn’t, so poor Leo was so upset and unhappy by the time he got to Choc because he was so hungry. By the time he got settled into his new bed and got situated, it was about 2 hours past his feeding time, so poor Leo was starving and it took some time to finally get him to calm down. My poor Leo! By that evening though, he was comfortable again and back to his laid back, calm, cute sleepy self. We will miss Hoag but we know he will have wonderful care and be in great hands at Choc.
It’s really sad and heartbreaking to see my baby in pain and unhappy. It’s stressful and saddening too to come into the NICU everyday and not hear any good news, but keep hearing things are getting “worse” and not improving. The thing parents do most besides loving their children is worry. I worry if he will be ok and worry if he doesn’t improve, but then I just try to keep hoping that he does get better it’s just a matter of when. I’m so tired from all the stress and worry, but that’s all that’s been on my mind 24/7. I’ve lost so much weight from it, and I feel guilty for getting more than 6 hours of sleep because I feel like I should be awake at least every 3 hours and be with my baby to take care of him, change his diaper, feed him, cuddle with him, and just be there for him. I feel unhappy and sad because I just want the best for my baby but there’s not much I can do besides wait and be there for him, and be there with him during this whole journey. I feel helpless not being able to do much else. However, I know that I’m still recovering, so I have to force myself to take it easy, otherwise I’d be useless to my baby boy. It’s a lot of emotional conflicts going on during this tough time, but I’m trying my best to do the best thing for Leo, and for myself and my family. The one thing that will make Leo’s move to Choc harder is that they don’t have the live stream cameras. So that will be very tough since I won’t be able to see him whenever I want. My patience has been tested for so long but I just have to keep on waiting because my little Leo is doing the best he can and that’s all that matters. It does help to go see him and hold his little hand and let him know that I’m right there with him, and that we will get through this together. I’m his biggest fan and cheerleader, I know he can do it! You can do it Leo!
Progress at CHOC: On Monday June 22nd, they did some examinations on him and a GI specialist decided to plan to put a gtube in him some time end of the week. The GI specialist also wanted to put Leo back on the reflux medication, Prevacid, but up the dosage and give it him twice a day. They said it will take more time to truly see the effects of it so they want to continue with the medication and see how it goes. A feeding therapist started to work with him. To my surprise, he started to nipple the bottle and drank about half of his bottle for the first time in about a week! That’s such an amazing step forward and I was so excited and proud of my little prince Leo! They gavaged the rest of his feedings that day just so that they don’t push him too hard, but he didn’t have any emesis since the day before too, so that’s also a good sign that things are getting better. Leo also had to get an Upper GI X-Ray scan, where they feed him this solid substance and watch how it goes into his system. Once again, they scheduled the x-ray when about an hour after this next feeding time, but he had to wait till the x-ray was completed before he can eat since he needed to have an empty stomach for the x-ray. We waited for almost 2 hours before the transport guy finally came up to transport Leo to the x-ray room so you can imagine how hungry he was getting. When we finally go him onto the x-ray table, he didn’t like it even more since we had to unswaddle him and pin down his arms and legs to take the x-ray pictures. I had to help 2 other nurses hold him down, and watched him cry his poor little eyes out because he did not like that. It was painful to see him so unhappy like that but it was over within 5 minutes and we quickly wrapped him up and put him back in the transport incubator and he was happy temporarily until he realized he was still hungry. Once he got gavaged, he finally settled down and was calm again. His x-ray results came back normal, thank goodness! Also, he is much more alert now and I can just stare into his beautiful round eyes for days!
The next day on Tuesday, I got a call from his geneticist saying his chromosome macro array test results came back and it just confirmed that he does indeed have tetrasomy 18p. I knew the test wouldn’t say anything different but I guess the geneticist wanted to really confirm his condition because he didn’t show any signs of chromosome problems besides the feeding issue. So at least we know for certain, but that doesn’t really change anything for me. He is still my sweet, perfect little baby boy and this feeding issue is just a battle he will win and soon enough, he’ll be able to come home and start many adventures together. I did get a wonderful news that morning and it’s that he drank his entire bottle all on his own at the 5am feeding!! I cannot believe how drastic he improved in such a short amount of time! From the rest of the feedings he drank more than half of his bottle on his own, and finished another bottle in his late night feeding!! Just look at his smile and his cute little content face! His smile just lifts up my heart and fills it with so much happiness! For the next few days he continues to nipple more than half of each bottle and would complete an entire bottle maybe 2-4 times a day! By the end of the week, he would finish almost every bottle except for maybe one or two feedings, mostly because he would just poop out from working so hard and he would fall asleep. I suggested to the GI Specialist if maybe we should put him on the regular flow nipple since the slow flow nipple might be making him work too hard and so he falls asleep. He thought that was a good idea and will run it by the feeding therapist team and see what they say. The GI Specialist said that Leo probably won’t need to get the gtube anymore, and that if he completes all his feedings 100% for 24 hours, then we can remove the ng tube! Such wonderful news!! I’m so happy and super proud of my precious Leo!!!
Leo got upgraded to a quieter room at Choc, so now he’s in room 210 instead of 208, and it’s suppose to provide a more “homier” environment. They moved him due to staffing reasons, whatever that means, but this is nicer because it’s more quiet. Also, there’s windows in this room for natural lighting, which I think will make him happier overall, and there’s recliner chairs (a plus for me!) and the pillows are fluffier haha, yes that makes a big difference to me (and him I’m sure)! Leo has been doing so well in the past few days, and now weighs 5lbs 7oz. He hasn’t thrown up since Sunday too! He really makes me so happy. It’s been tough trying to be strong and attentive to Lily, since she still needs me too, while trying to be strong and solid for Leo. It’s a tough balance to juggle because Lily is so intuitive and smart that she knows Leo is “sick” and has to stay at the “doctor’s”. When I’m sad, I try not to cry in front of her or show my sadness to her but she can sense it and will ask me why I’m sad. I just want our baby Leo to be home with us. Overall though, with Leo’s amazing progress, I feel like I can slowly breathe again and I notice that I am indeed happier and genuinely smile more as well. When my babies are happy, I am happy. I think that’s just how life as a parent works. Trying to be positive and hopeful is really hard to do especially when things have been so challenging, but all the good vibes and happy positive thoughts are definitely paying off. It also definitely helps at all our family and friends are wishing him the best of luck and sending him good vibes and prayers as well so thank you everyone for that! I’m hoping Leo will be able to come home sometime next week. He just needs to be able to feed on his own and they’ll do a final examination and hope he passes everything! My precious Leo, your courage and bravery and perseverance through this tough time is inspiring and is giving me the courage and strength to be strong and happy for you. Your love keeps me going, and I know you will be coming home soon!
Here is a video of Leo (18 days old) being so alert! I’m so proud of you my little prince Leo. I love you so much my little Leo!
Keep on fighting, you will be home soon my littlest love!
Happy 3rd Birthday to my sweet wonderful Lily pad! Lily weighs 27 pounds (only gained 4 pounds this entire year) and is 37 inches tall, both in the 13th percentile range. Her hemoglobin levels dropped from last year down to 11.3, on the low side so she needs to have more iron intake, more fish it is!! Haha. There’s actually a lot of foods rich in iron like red meats, pork, poultry, seafood, beans, dark leafy greens, dried fruits, and certain cereals breads and pastas! She pretty much just needs to eat more in general, but she’s so energetic she just runs around and burns it all off. Less play, more eating Lily haha! She’s small for her age but definitely big in personality and maturity. She’s so smart, spunky, and sassy and is constantly surprising us with her level of understanding and awareness of our world. (Thank you so much Mieng for these beautiful pictures of my Lily pad!!)
A couple weekends before her birthday, we had a small lunch at Favori with both of our immediate families to celebrate Lily’s birthday since we didn’t throw Lily a party this year. Then on her birthday weekend, we took her Balboa beach where there is this nice little playground on the sand that Lily likes to play at. She loves to climb up the ladders now and go down the big kid’s swirly slide and repeat those things all day long! She also likes to look at the water and run towards it and away from it, over and over again. Digging in the sand for hidden treasures is also a favorite beach activity of hers and pointing out all the seagulls and birds that fly by as well.
As you all know, Lily’s little brother Leo made his special and amazing arrival the day before her birthday. So unfortunately we couldn’t continue her birthday weekend as planned, but I still wanted to make sure I do something special on her actual birthday. I told Khoa to bring some presents that I had for her to the hospital, to let her open and I also made her a cake that is her favorite by far! She doesn’t really eat cake or cupcakes much, so I decided to fill a glass with her favorite sweets, crispy M&Ms, skittles, and red vines and stuck a sparkly candle on top! I’m pretty sure the hospital would not approve of the open flames…but we did it quick so they don’t know, and we were safe about it haha. Plus, Lily LOVED it and that made me super happy. Her face lit up when she saw the bowl of candy and she was even more excited when she saw how sparkly the candle was! So that was a big success!
Thank you to everyone who sent her birthday presents as well! I’m so touched by everyone who took the time to remember Lily’s birthday and shower her with love even though you can’t be here in person to see her and celebrate with her. This birthday is special, not just because she got a new baby brother!! So it was very important to me to make sure to make her feel loved and special even though there’s this new amazing change in all our lives. So thank you everyone for helping me make her feel special. I know it’s just presents, but to a little 3 year old, it’s much more than that.
We had a special celebration at LePort for Lily’s birthday as well, and we brought in fruit filled cookies from Trader Joe’s and cut up some strawberries for the kids for the special snack. I also bought some minion themed party favors to pass out to the kids as well since Lily loves minions right now! I bought plastic favor cups, bubble wands, super bouncy balls, stickers, and organic fruit snacks. I made thank you favor tags as well and tied them to the bubble wands with yellow ribbon to complete the package! Lily and her friends loved them! It was really cute and impressive to watch Lily set up the table for snack time and sit at the table and eat her snacks so well. She was so good at cleaning up after herself and then saying goodbye to us without a fight! I was so impressed with her maturity, it made me proud and also a little emotional that she’s growing up so fast.
I cannot believe my precious Lily pad is now 3 years old! Seeing my Lily pad happy makes me so happy, and knowing that I was a part of making her happy, just makes me feel so wonderful inside. I feel like she’s so smart and advance for a three year old, she speaks so well with multiple complete sentences and has such a wide range of vocabulary. She is so observant of her surroundings and is so intuitive to emotions as well. She’s majorly sweet and is a naturally caring and nurturing person, proven by the way she treats her baby brother Leo. I cannot be more proud of my Lily pad and I look forward to watching her continue to grow into such a beautiful lady, both inside and out. I love you soooo much Lily, you light up my life, you make me and your daddy so happy, you are so amazing and beautiful, you are everything worth living for my love. Happy 3rd Birthday my precious Lily pad!! You can see more pictures from Lily’s birthday festivities HERE! Below is also a video I made of some fun happy silly loving moments with Lily in the past year!! Enjoy!
After such a long journey, our precious sweet little prince Leo Dinh Ngo is finally here on June 7, 2015, at 4:59pm, weighing 5 lbs 5 oz, and measures 18 inches long! Once again, this entry will document my whole labor experience, so if you don’t want to know the details, then just enjoy the pictures, and don’t worry about the text. After all, this blog is for Leo to read one day, so for us to reminisce on our adventures together!
After experiencing 3 false alarms, I decided to wait it out a little longer before going into the hospital, since I really did not want to be sent home again if the contractions decided to ease off (or Leo decided it was too comfy in my belly and didn’t want to come out). I started to get pretty consistent contractions around midnight of June 7th, and so I started to track them on my phone with a contractions tracking app. After 2 hours of tracking, they were consistently happening every 7-10 minutes sometimes 4-5 minutes too. I was still worried they would stop being consistent so I stuck it out for another hour but I told Khoa to get ready because I feel (and hoped) that this would be the real deal. So finally after 3.5 hours of tracking, I decided to go. We got to the hospital around 4am, with Lily, and we got settled in and they tracked me for an hour. My last appointment with my OB showed that I was 3cm dilated, but when I got to the hospital, the on call doctor said I was only 2cm dilated. You can’t go backwards but I guess the hospital doctor was more strict with her measurements…who knows. So by the end of the hour, she said I’m close to 3cm, so because I showed progress and I had consistent contractions, they finally decided that I’m indeed in labor!! Finally!!
We got admitted to our labor and deliver room, and Lily was really sweet and kept popping her head up from the pull out bed that she was laying on with Khoa, and would just look at me with concerning eyes, to make sure that I was ok. She’s such a sweetheart. Soon enough, her and Khoa fell asleep, and I eventually went to sleep for a bit too. The nurses would come in now and then to see if I needed anything and asked if the pain level increased or anything. The contractions definitely became more frequent, but they didn’t really get more painful, and so it was just a waiting game. Around 11am, they broke my water and that must be the most unpleasant part of this whole labor experience in my opinion haha. So after they broke my water, the contractions actually started to slow down! That was really strange, so they nurse gave me pitocin to increase my contractions, and eventually that worked and the contractions definitely started to get more painful and I finally asked for the epidural around 2pm. At that point I still measured 3cm, they noticed that Leo’s heart rate would decrease every time I get a contraction, but they said it was a variable decrease in heart rate so they had a feeling that his umbilical cord was wrapped around his neck. So they had to do an anmio transfusion and put some fluids back into me so relax the cord to take pressure off his neck. How scary does that sound?? The nurses and doctor seemed pretty casual about the whole thing so it must have been a common thing so that helped me not freak out… They also made me wear an oxygen mask, like with Lily too, to help increase oxygen flow to Leo as well.
By 3:30ish, I felt like I could feel the tightening of my stomach, like as if I can feel the contractions again, so I told the nurse and she gave me another small dosage of the epidural. However, around 4ish, I felt like I can feel the contractions again but a little stronger this time. The nurses didn’t want to give me more epidural in case I get too numb and can’t push, but they said that I shouldn’t be feeling the contractions and that it should only be pressure. However, I know my body and what I was feeling was not just pressure and turns out, it was my body getting ready and to push Leo out! So the doctor checked and I was already 9.5cm! She asked me to give a test push and what do you know, she said it’s time to push for real! So she called all the staff members that need to be there for when Leo’s here so they can all be ready to examine Leo and get ready for his care. There were at least 8 doctors and nurses from various departments, so many people all ready to take care of our Leo! Once everyone arrived, the doctor told me to start pushing when the first contraction came. So I did and one of the nurses thought maybe Leo will be here on the 2nd contraction but the doctor said “nope, he’s here now!” and I looked at Khoa with an expression on my face like “is that true?” since I can’t see anything down there, and next thing I knew, they were handing me Leo to hold! My Leo, my rainbow baby, you are finally here in my arms!!
I could not believe how quick that was, it must have been about a minute! I was in more disbelief that our precious Leo is finally here and that I’m holding him in my arms and I can hear his beautiful cry of life. Tears of joy started streaming down my face as I cried with my Leo. My heart was filled with so much joy and happiness. I’ve been waiting for this day for almost 2 years now and after the crazy roller coaster we’ve been on to end, so that we can start a new adventure that included our Leo, and finally the wait is over. It was such a blur; I remember people checking him, listening to his heart while I’m holding him and looking into his eyes and ears and then Khoa cutting the cord and then they quickly take him aside for a couple mins for further examination and then they handed him right back to me. They told me they’ll let me have my golden hour with him and then they will bring him to NICU for further examination, testings, and care. So for a whole hour, it was in eternal bliss. I just held my Leo close, skin to skin, and savored each breathe he took, absorbed his warmth, lost myself in his little baby noises, and counted my lucky stars for having this special day.
Eventually I got moved to my recovery room, which happened to be on the same floor as the NICU, so Leo was only 50 feet away from me across the hall. Before I did that, I got some presents ahead of time, and surprised Lily with them in our room, and told her that these are presents from her new baby brother Leo! So she said “from Leo? Oh thank you!” She loved it all and started to draw in the notepad and play with the snap bracelet and the minion flash light glow toy too. I wanted to do this for her so that she can feel special and loved even while all this stuff is happening with Leo, I want this to be a fun event for her so that she doesn’t get jealous of her new brother. So far I think it’s working! Once I got settled to my room, I got to visit Leo in NICU. They had him all nice and cozy in his incubator since his body temperature was a little low. They told us that he had his first feeding (he drinks a higher calorie formula called 22 Calorie Enfamil) and that he took the bottle all by himself too! That was a major surprise and amazing news since we were expecting him to have feeding issues and would require a feeding tube since 41/42 babies with tetrasomy 18p had that problem. I guess our Leo is just such a strong fight that he’s the 1 baby out of 42 that beat the odds! I was so proud of my son and that was just the icing on the cake for me. Even though he was in NICU, they provide the homiest environment for the babies, so I was still able to take him out and hold him whenever I want and he definitely looked very happy and comfortable. On the 2nd night at the hospital, since Leo was doing so well with his feedings, they let him stay in our room. I was so excited and Lily was super excited as well! She insisted on helping with his feeding and at one point told me to let go of the bottle because she “got it” haha.
Of course the last night of our stay, we had a nice celebratory dinner and I kept a bottle of the apple cider to drink when Leo turns 1 years old! I did this with Lily and it’s cute to see how huge the bottle was when she was born and then how it looks like a normal size bottle to her a whole year later! I can’t wait to do this for Leo. It’s silly and small but it’s fun =). Also, thank you to everyone who sent us flowers, balloons, drinks, snacks, and gifts for Leo and for everyone who took the time to come out and visit me and Leo at the hospital. The flowers and balloons really helped make my room that much brighter and made me feel really special and loved. I know Newport Beach is not very convenient for a lot of people, so it means a great deal to us and we are truly touched by all the love and support that we have received. We also really appreciate all the phone calls and messages as well! I got discharged the next day, but we found out that since Leo’s feeding on his own started to decrease, he had to go back to NICU and get a feeding tube to help him get the nutrients he needs to grow. We were disappointed due to the emotional roller coaster we’ve been on throughout this journey, but we only want what is best for him and whatever care he needs, we want him to have it. However, it was very saddening to be wheeled out of the hospital without my precious Leo in my arms, but I know that he will be in great hands in NICU and he will come home when he’s well and ready.
Leo’s Progress: He had a bunch a tests done, a heart ultrasound, renal ultrasound to measure his kidneys, hearing test, head scan, scrotal ultrasound, and a macro array chromosome test. Most of the tests came back normal with nothing major to worry about. The renal ultrasound showed fluid in his kidneys but there are no obstructions and the kidneys function normally so we just need to do a follow up ultrasound in a few weeks. Normally people don’t do renal ultrasounds on newborns because organs are still developing so you normally wouldn’t see a completely normal renal ultrasound anyways. Leo failed his hearing test but they feel that it could be due to fluids in his ear, so they taught me how to massage his ear and stroke his face to draw out the fluids from his ears. He will be retested soon. We are still waiting for the results for the macro array chromosome test and that usually takes about 2 weeks to get the results back. All that being said, we are super thrilled that nothing major is found and that our Leo is physically great! His stomach is still on the small side but other than that, he is exceeding all out expectations and I cannot be more proud of him.
On day 4, Leo weighed 5lb 1oz, which is borderline to the 10% maximum of normal weight loss. So whenever Leo doesn’t finish his required amount of milk his feeding, they will gavage (getting the formula to his stomach directly through the tube) the rest of his formula. The occupational therapist taught us how to massage Leo’s mouth and gums to get him to nipple the bottle better, and to loosen his jaw cause she said it was really tight. It really helped and for a couple days, he was doing so well and would finish most of his feedings. He would drink enough cumulatively for that day that he didn’t need to gavage any of his feedings. He did often get really sleepy halfway through or near the end of the feeding and we would have to burp him or unwrap him to wake him up to finish his feeding. Each new day/shift, he would get an increase in the minimum amount of milk he would need to take. When it finally got to a minimum of 45cc per feeding, he suddenly started to slow down on his feeds and not complete them, and they would have to gavage the rest of his feedings. Before when he had a minimum of 35cc, he would sometimes go above and beyond and finish up to 45cc! All of a sudden, he can barely finish 25cc out of 45cc, and he’s been throwing up at each feedings for a whole day now. He would be wide awake but he just won’t nipple the bottle. The nurses and doctors say that his is due to the tetrasomy 18p and that feeding issues was a huge part of this. I don’t understand why he was doing so well and now he’s not, but they told me that sometimes you have to get worse to get better. He went from 97% of completing his daily feedings to 77%, to 55% to maybe 10-20%. Leo has a smaller stomach too, so they feel that the increase in volume is too much for him and so that’s why he throws up. So for now they’re only going to gavage his feedings, slowly in a span of an hour, to see how he takes it, allowing his stomach to digest the milk and make room for more, so that he doesn’t throw it up. Then we will work on getting him to nipple again. It will be a long journey, but I know he can get through it.
It’s very hard to keep it together and to stay strong for my little boy because this whole process has been an emotional roller coaster for all of us, and I feel very overwhelmed at time but these emotions. Every time I see great progress, I get an immense amount of hope that goes along with it, hoping he will be able to come home soon and explore this great big world together with us. However, when we start to see set backs, it’s saddening only because I want my little Leo to be okay, and I worry like any other mother would worry, about the well being of my boy. The last couple days it seems like his feeding abilities have been getting “worse”, but it’s not his fault at all. I know he is doing the best he can, and he just needs more time to reach the light at the end of the tunnel. All we can do is wait for him to let us know what he is capable of, and be patient and encouraging along the way. My little Leo has already beat so many odds to get to where he is now. If we didn’t know his diagnosis, he would be like any other baby, but with the struggle of feeding, which is not a big deal at all in the grand scheme of things. After every storm, there is a rainbow of hope, my Leo, my rainbow baby. Overall he is healthy and I’m able to hold him close, feel the warmth of his body, listen to his cute little voice, and look into his brilliant bright eyes. Even though things have been rough, just being able to be with my Leo makes me happy. He will have a long journey in NICU, but he will be in the best of care, and I cannot be more grateful to all his nurses and doctors there. I am eager to have him home, but only when he is ready. I miss him terribly when we are apart but luckily there’s a live stream camera that allows us to check on him whenever we want, so that helps a lot!
Here is a super sweet and cute video of Lily being such an amazingly loving big sister to her baby brother Leo! She impresses me so much with her gentle compassion and it just fills my heart with so much love to see her so nurturing and caring to her baby brother. I love my babies so much, you both are so amazing!
Stay strong my brave little Leo. We love you so much and I know you are doing the very best you can! No matter how long the rain lasts, there will be a rainbow in the end. No matter how sad you may be, believe, that happiness is waiting. Leo, you are my rainbow, but you shine brighter that all the colors in the world. We will eagerly, yet patiently wait for your homecoming!
I’m so proud of my little prince Leo, he has made it to 37 weeks gestation and is officially full term!! This means that it is safe for him to be delivered any time now, but of course the longer he cooks, the better, but at least there are much fewer risks now than if he were to be born preterm! My fetal diagnostic on Thursday went well, his heart rate is still on the low end but overall it looks good and amniotic fluids is 21cm, a bit high but still within the normal range. It’s probably high cause he’s so small so there’s lots of extra room in there haha. I’ve been getting crazy painful uncomfortable contractions at night but it’s not consistent enough to go in… So I just have to hang in there until it’s consistent, but even then if it calms down after a couple hours, my OB said it’s better to go in to be safe than sorry cause if I wait too long I might miss my window for the epidural. Last night the contractions were so bad I was like on my hands and knees and that was the only position that sorta helped A LITTLE BIT…haha. It was like that for half an hour. It’s crazy how every pregnancy is different cause it was so not painful AT ALL with Lily until after they broke my water and I was in crazy pain for just 20 mins before the epidural kicked in. I think maybe also this time around, I’m just more aware too, cause most of the time the contractions just feel like tightening of my stomach, which is totally manageable. However, I think the other uncomfortable part for me is the acid reflux at night. So I tend to stay up super late to the point where I’m totally wiped so that when I lay down to sleep, I just pass out right away, otherwise I’ll feel the burning acid reflux. Lately I’ve been woken up randomly in the middle of the night and throw up a little…not very pleasant. This happened with lily too, so this isn’t a new experience for me. The end is approaching so I can endure it for a lil longer. That’s what they’ll tell you in birthing classes too, that there is an end to all this madness haha. So I just have to keep focus on my light, my Leo, at the end of the tunnel, it’ll all be worth it!
My OBGYN also said my belly measures 32cm, normally whatever wk you are, that’s how big it should be, so it should measure 37cm. However, last wk I was 33cm so I lost a cm but she said it’s probably cause the baby dropped lower, so that’s another sign that my body is getting ready to delivery. She didn’t measure my cervix today so I don’t know how much more dilated and effaced I am but she will measure it on Thursday at my next appt. Effaced means how much of the cervix thinned out, 100% means it’s ready for baby to come out and last week I was 70%. My dr also said I can’t get induced until 39 wks, so in two weeks, but I have to be at least 4cm dilated and over 50% effaced, so last wk I was 2cm dilated so I’m close but not there yet. She did say it can happen any day though, especially since I’m getting so many contractions, so we just have to wait and see! This past month and a half has been so crazy nerve wrecking because of my risk of having preterm labor, but it’s such a relief now that we made it to full term. The unknown is always so scaring because it’s out of your control, out of your reach, and you can’t do anything but wait. Even with Leo’s special condition, we still won’t know how severe his situation will be, so we just have to continue to wait and see. What I find helpful during the waiting process is to just distract myself with little side hobby projects, and do things that makes me happy. That includes seeing friends and family as well as fun little activities and playtime with Lily. It’s best to fill the waiting space of anticipation with active happiness and love. All and all, I’m very glad we’ve made it to full term!! Leo will be here soon enough, when the moment is right, only he will know.
“Patience is not the ability to wait, but the ability to keep a good attitude while waiting.”
Journey to meet my prince Leo continues…
Things worth having are worth waiting for.
We had our meeting at the hospital a few weeks ago with the head staff from NICU, Neonatologist, Perinatologist, L&D, Social Worker, Geneticist, my OBGYN, and baby nursing staff. They went over possible and realistic care for Leo for after he’s born and they said that 41/42 babies with tetrasomy 18p have feeding issues. So realistically he will be in NICU (neonatal intensive care unit) shortly after he is born, and will probably be there for 4-6 weeks. They will be able to do a cranium ultrasound, heart ultrasound, abdomen ultrasound and chromosome blood test in our room, before he goes to NICU. They also gave us a tour of NICU and it looks very homely and they even have a camera above his bed that will be having live streaming feed of him at all times so we can just go online and see what he’s up to 24/7! The meeting was very informative and help make us feel more confident that he will be in the best hands after birth.
We had another growth ultrasound a week later and he measures at 4lbs 10 oz! He’s growing even though I’m not and I actually lost a pound but it’s ok since his weight is the only thing that matters! His stomach is still a little small but that’s ok. His heart still has the same issues, his right chamber looks a little bigger than the left so they think it could be due to the dilated size of one of the pulmonary blood vessels or one of the valves. The doctor is referring us to see a pediatric cardiologist and we will meet with one to take a closer look at Leo’s heart. I had my obgyn appointment afterwards and everything seems to be ok for the most part except for my weight lost and belly size got a tad bit smaller but that’s ok. Oh and at the u/s they measured his heart rate range 115-119bmp which is at the low side. As long as it’s above 110bmp then it’s ok, but if it goes below then they might have to deliver early because it means baby isn’t getting enough oxygen and blood flow. However, shortly afterwards at my OBGYN appt, they measured his heart rate to be 140bmp…so who knows what’s going on. Maybe Leo decided to sleep durng the ultrasound and wake up for my doctor’s appointment haha.
Also, my OBGYN said if I make it past 35 wks (so 1 more week at this point), if I get frequent contractions again, then they won’t try to stop the contractions and I’ll most likely just go into labor and deliver, but it sounds like chances of him surviving at that point is better than if he were to be born a premie now. It’s still risky but the longer he stays in the belly, the better, so giving birth 2 weeks from that point is still a lot better than if I were to give birth a month ago. So that’s good to know. So all in all, not too much changed, and we just have to see the pediatric cardiologist and see what they find. I’m also going to be going into the hospital twice a week (monday and thursday) for fetal diagnostics where they strap me in for an hour and monitor the baby’s heart rate and my contractions, and then do a quick ultrasound now and then only to measure the amniotic fluids. I have my next u/s in a month, beginning of June, and my next obgyn appt is in two wks and then every week after that. Also, the ultrasound showed that he has a lot of hair already!! Probably like a cm of hair already! He’s probably gonna have a full head of hair like Lily did!
Fast forward a week, I got a call from the pediatric cardiologist today and I’ll have an Eco u/s on Monday after my fetal diagnostic. But at the u/s, they’re going to take a much closer look at his heart and determine if he will need surgery or not. If he does then I can’t deliver at Hoag and I’ll have to do it at the Long Beach Memorial Hospital since that’s where all the pediatric cardiologist specialists are, so that would be a little disappointing since I really wanted to be at Hoag, but it would be even more scary and worrisome since that means he will need surgery, but at least he will be in the best hands. Hopefully though he won’t need surgery but I’ll find out on Monday. Also, the other thing is the severity of his neurological issues and developmental delays; we won’t know how severe that will be until he’s born and we just have to watch him and see. But for now, we can just hope his heart will be ok and that things stay minor. Fingers crossed!
Later I had the first fetal diagnostics and the nurse said everything seems to look ok so far, but the doctor still has to go over the results but I think everything’s fine at the moment. His heart rate is still on the low end but it’s still within the normal range for now. I just have to make sure I relax and not do anything to bring on more contractions. I had the eco u/s with the pediatric cardiologist afterwards and there might be a lil hole in the bottom chamber of his heart but pulmonary vessel the valve size irregularities and stuff is ok and he said there is nothing to be concerned about for now. So that means we can plan to still delivery at Hoag and Leo won’t have to go into immediate survey after he’s born, so that’s wonderful! We will still need to do an Eco u/s when he is born but for now it’s ok! He is such a little fighter, making me so proud of him already! All these unknown situations and the whole waiting game is very nerve wreckng and the health and happiness of my Leo is constantly on my mind and is one of my many focuses in my daily routine. It’s hard to be positive, stress free, and happy when I’m constantly worrying about this, but I just have to keep on truckin’ along in hopes of knowing he will be in my arms soon.
On another note, here’s my latest crafting adventure for my Lily pad, a crocheted musical unicorn that plays the song Somewhere Over the Rainbow! I had it all finished and it was sitting on Lily’s little couch waiting for her when she got home from school, and she noticed it right away and asked if it was for her! I said yes of course and that I made it for her, and showed her how to pull the tail for the music to play. When she heard the music, it got her even more excited and she said “oh thank you mommy!!” and gave me a hug and kiss! Spending all that time and putting in all my love into this little projects for her is all made worth it by her sweet reactions. She would hug the unicorn while watching her shows and randomly she would give it piggyback rides too and then make me do it and tell me she wants to take a picture of me doing so haha! She loves to pull the string to play the music. Such a genius invention, the pull string music box! I’m so glad she likes!
This past Sunday night, we went into the hospital because my OBGYN told me that if my contractions are about 10 mins apart then I should go in. So that’s what happened and I went in, but the doctors there didn’t seem to be too concerned and sent me back home. I had my fetal diagnostics the next morning and was monitored for half an hour and got 3 contractions as well but it seemed to be fine, which is a good thing since I’m so close to 37 weeks (full term). I’m almost there, just hang in a little longer Leo! Tonight I had another scare where the contractions almost got down to every 5 minutes, and I was so uncomfortable and in pain that at one point I was shaking and crying from it all. Lily saw I as hurting and ran to me and said “mommy you are hurting? It’s ok, do you want a bandaid? It will make you feel better!” I told her I’m ok and she gave me a sweet hug and kiss. I love her to pieces! I decided to lay down to see if th contractions like get better but after ten minutes my acid reflux got the best of me and I ran for the bathroom and threw up pretty much everything I ate today. Oh the glamour of pregnancy! Luckily though, the contractions calmed down and I’m going to tough it out for the night. I have my fetal diagnostics again in the morning along with my OBGYN appointment afterwards so I will see what happens then. (Tomorrow I’ll be 9 months with my little prince Leo. I will update this later with my 9 month baby bump photo on I find time to take a photo this weekend, so stay tuned!)
Update: (5/23/2015) As of this past Thursday, I am 2 cm dilated and 70% effaced. My belly measures 33cm, a little small but it’s ok. I’ve also gained a total of 7 lbs… Progress right? Haha. My fetal diagnostics went well and baby is looking good in terms of heart beat! I still have contractions but not enough for them to be concerned. My amniotic fluids measured at 21 which is good, anything between 8-25 is normal. So Leo just hang in there a little longer!
“No one will ever know the strength of my love for you. After all, you [and your sister] are the only one who know what my heart sounds like from the inside.”
Journey to meet Leo continues…
One of my many hobbies is crafting, and I like it not only because it’s fun, therapeutic, and I get to be creative and exercise that part of my brain, but because I know that all my time, and love I put into my projects, will totally be worth it when I see the excitement and smile on my baby’s faces when I give it to them, or when later the grow up and realized that I made it for them, since newborns don’t really understand much about gifts yet haha. So when I was pregnant with Lily, I made a bunch of things (you can see them below) and I figured it’s time to start making things for Leo! I actually knitted a bear for him while I was pregnant with Lily because I knew we would have a 2nd child eventually, so I made a similar style stuff animal for the 2nd child, and make it gender neutral. I crocheted a little beanie for him with ear flaps and baby lamb ears and braids, and letter blocks that spelled out his name, just like the ones I made for Lily. My favorite thing that I made for Leo though is this musical baby lamb that I crocheted, and when you pull it’s tail, it plays the musical tune of Twinkle Twinkle Little Star! It’s so cute and I can’t wait to give it to my baby Leo. I’m thinking about making one for Lily but with a different animal since it’s so cute and adorable! I found the pull string music box on ebay and this particular one, you can choose which song it plays too, so for Lily’s I’ll pick a different song so they can have their own unique musical stuff animal. There’s a video to demonstrate the musical lamb below, ENJOY!
Here are some crafts that I made for Lily when I was awaiting her arrival! The first collage image is all done by knitting. I remember going to a specialty yarn store to buy the pink yarn for the dragon’s body since I wanted to find a yarn that had random specs of color in it. Making these little crafts for my babies is very relaxing and fun and I know they’ll appreciate the time, effort and love I put into them one day!
It’s the little moments that makes life big. We decided to have a little sprinkle celebration for our little prince Leo. Earlier this month we had a lunch dim sum celebration with our immediate families to celebrate the upcoming arrival of our baby boy, and yesterday we had a small intimate gathering with some friends at our house. We didn’t want to do anything big or fancy, no gifts needed, no games or elaborate party decorations, we just wanted to enjoy the company of our great friends before the arrival of our second little bundle of joy. However, I did want to have a small little dessert table, so I decided to make a little castle diaper cake for Leo for fun since I never made a diaper cake before, and I figured it’ll be cute to have a little castle for our little prince. I also made koala bear mobile and block letters that spell out Leo’s name for Leo’s that will be used o decorate Leo’s crib area as well! I like having practical and multi-functioning things, in this case, my crafts can be used as party display decorations and then decorations for Leo’s nursery corner in our room! I made two flavors of macarons as well, matcha green tea and vanilla macarons. We also bought a yummy cheesecake from costco as well and got to reuse the cake stand that my dad made for Lily’s 2nd birthday party last year! The backdrop curtain I used to Leo’s dessert table display, was actually part of our laundry room curtains that I made awhile ago, hooray for being resourceful! We frames Leo’s recent ultrasound photo for the center of the display as well and even though it’s the back side of his head and body, it’s a still a cute picture of our baby boy!
It is important to me that we celebrate the little moments, even when there’s nothing special about any given days, it’s what you make of it that makes it special. I’m happy to know that one day I can show Leo how much is was already so loved before he even arrived, and that we took the time out of our busy crazy lives to celebrate this journey to meet him. No matter what challenges we will face in the future, it won’t take away the love we all have for him. Thank you to everyone who took the time to come out and celebrate Leo, it means a great deal to us. it’s nice to know what we are not the only ones excited for Leo’s arrival. Thank you all for the diapers as well! We feel very grateful and blessed to have such wonderful friends and family who continually provide us with so much love and support for our precious baby Leo. You can view more pictures HERE.
Life does not have to be perfect to be wonderful. Journey to meet our Leo prince continues…
“The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”
For a while now, I started to get confident in our situation with Leo and feel like I’m ready to handle whatever comes our way. I avoided shopping for clothes and things for Leo because we didn’t know what to expect in terms of life expectancy, but as time progressed, it seemed like we will be able to have a life with him. So I started to shop for Leo and allowing myself to get excited for his arriving, especially when I picture him wearing the cute little onesies and everything. We started to make plans for his arrival like picking out the perfect outfit for him to wear for when he leaves the hospital and getting ideas for his baptism/1 month party. It made me happy to be able to think about those things and plan, and even buying swaddles blankets for him was exciting for me!
Then last Wednesday night, I started to spot a little bit, and a little bit in the morning. So I called my OBGYN and they asked if I was experiencing and cramping or contractions too, and I said I was. So they suggested I come in to L&D (Labor and Delivery) to get monitored to make sure I’m not going to preterm labor. After 2 hours of monitoring, they picked up 3 contractions and the doctor told me there’s a high chance that I can go into preterm labor as soon as a week, or 5 weeks, or just any time now! She said that babies with chromosome disorders have very little chance of survival if born premature, and she told me to talk to my doctors to discuss the game plan for if I do go into preterm labor. It was very shocking to hear, especially when she asked me if the situation arises, if I’m “prepared to watch my baby die on the screen”, or in the incubator, or in your arms, as our options if we go into preterm labor. It was very harsh but I guess they have to be realistic and no sugar coat reality of things, so it was definitely hard to hear but I guess the reality is hard in general. Sugar coating only misleads the heart, so even though it’s upsetting to hear, it had to be said I suppose. It broke my heart to hear that there’s a high chance he might not make it now, I felt like we just can’t seem to catch a break from all this craziness. Do we keep planning for a future with our son? Or do we just put everything on pause in case the worst case scenario happens? I was very torn and emotionally spent from everything, I needed time to just take in the news and reorganize my thoughts. The doctors also suggest I stop going into work and so I’ll be working from home now until birth time. Until then, I just have to keep Leo inside as long as possible and take it easy and hope the contractions don’t increase. After a couple days of deep thinking, I decided to just keep having hope and proceed my plans for having a life with my son. As each day passes with him still in my belly, it’s one day closer to a higher chance of his survival. The phrase “Time is precious” never meant more to me until now. We aren’t ready for you to come out yet Leo, you still have a lot of baking to do!
Yesterday I was very nervous going into Leo’s growth ultrasound. The unknown is always scary, but luckily, after a long ultrasound session, it went well for the most part! He currently measures about 2lbs 14oz – 33% with a heart beat rate of 119bpm. He is facing head down, so that’s a good sign for having a natural delivery, however if something comes up, a c-section is still a possibility. They looked at his heart extensively and the Dr. said he’s concerned that one of his heart blood vessels might be dilated still, but it’s really hard to tell in the ultrasound, but if that’s the case, he’ll just need some extra treatment after birth. Either way, Leo will most likely have a scan after he’s born anyways to take a better look at this heart and look at things that the ultrasound can’t pick up. His stomach is still on the small side, which the doctor said is expected, but it’s not too much of a big issue yet. Other than that, there are no new developments, which is a good thing. Ultrasounds can’t detect every single birth defect, but at least for now, there’s no major issues that can be seen, and of course we won’t know what neurological issues he’ll have until he’s born as well. So we just have to keep hoping for the minimal amount of issues possible.
Today I am 30 weeks and 1 day, and I had my doctor’s appointment with my OBGYN and Leo’s heart rate measured at 140 bpm (big jump from the day before) and my belly measured at 30.5cm. Growth wise we are on track, which is a very good sign since they expected my belly to not be as big considering the circumstances, and the fact that I’ve only gained 2 pounds since my start weight. But as long as baby is growing, that’s all that matters! I’ll be going into my appointments every two weeks now, and in a month, I’ll have my next growth ultrasound and we will have a meeting with all the doctors, nursing staff, genetic counselor and doctor, and other members of the hospital staff from NICU department, etc. to go over the game plan for Leo’s arrival. Around that time, I’ll be going in to L&D for fetal monitoring for an hour once a week as well to check up on Leo to make sure everything is okay in terms of amnio fluids, his heart rate, breathing, etc. I am still getting about 6-8 random contractions a day, but at least it hasn’t increased in frequency. So until then, I just have to relax and keep Leo inside as long as possible! Stay in momma’s belly sweet Leo, at least 7 more weeks to go! I am feeling hopeful, despite our new reality and scare from last week. Also, during the ultrasound, Leo decides to be camera shy just like his sister, and didn’t want to show his face, so enjoy his lovely backside in the ultrasound images below!
“The Grand essentials of happiness are: something to do, something to love, and something to hope for.”
Allan K. Chalmers
Journey to meet Leo continues…
“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.
On 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.
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.
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.
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.
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.
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.
We 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, and 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.
“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…
Lily has been developing quite a sassy and entertaining personality. I can never get enough of my Lily pad, and I seriously can just watch her all day with the biggest smile on my face because she also does and says the darnest things! If you’re bored, or just want to brighten up your day, here are a bunch of videos for you to enjoy! Warning: these videos will force you to smile and melt your heart! =)
Here’s one of Lily laughing so hard that she had to pee haha!
Lily (2.5 years old) uses training chopsticks for the first time! I’m so impressed with her because she picked it up in a matter of minutes!! Before I started recording, she said “I did it!” and was so excited!! I’m so proud of you my lily pad!!!
Lily (2.5 years old) learns her first Christmas song, Jingle Bells! I love her voice and enthusiasm!!! So cute!!
Lily (2 years 8 months old) is enjoying eating her orange slices with mommy and being silly!! She cracks me up!!
Lily (2 years 8 months old) really loves music and singing and likes to play on her guitar! Check out her awesomely cute talent!!! I love her to pieces!!
Lily (2 years 9 months) loves to talk and sometimes it’s gibberish but it’s still pretty cute. Here’s a video of Lily reading a book called Animals Around The World (thanks Sarah for the book!) and she decides to read it her way to us! I can listen to her all day, she’s so hilarious!! I love her to pieces!!
Lily (2 years 9 months) loves to sing and picks up songs really quick now. She sang this song before but it hasn’t been this clear. It’s really cute, but why does she have an accent when she says “master”? Haha! I think it’s from the youtube video from the UK that she watches and they tend to have an accent when they sing…Either way, it’s super cute. Also, when she weighed herself on the scale, she said she’s 24 pounds, and she really is 24 pounds, amazing! High 5 Lily!
I’m a little behind on my blogging lately, but better late than never! Here’s what we did during the holidays 2014!
This year for Thanksgiving I decided to take on the challenge of cooking my very first turkey! I brined it the night before with broth and seasoning and gave that bird a salt rub down massage too haha. It was pretty simple after that, just wash the turkey the next day when I’m ready to cook it and then put some season on it, stuff it with veggies , bay leaf and thyme, and surround the pan with veggies as well. Then just let the oven do the rest of the work with the occasional basting every hour or so. The turkey came out delicious and was a big success and I’m very glad I got to share it with some wonderful people!! I’m definitely thankful for many things in my life, but most of all, I’m thankful to be going through this crazy journey of life with the people I love.
In December, we took lily to the Queen Mary’s Chill for the first time to see the cool ice sculptures and walk around the Queen Mary as well. There were 2 million pounds of ice sculptures, even a 10 foot ice slide, and a bunch of fun activities that Lily was unfortunately too young and small for, but we will definitely come back for her to enjoy them. They had tubing, a carousel, swings, ice skating, and games too! The Ice Kingdom was 9 degrees inside and so they gave us all parkas to wear over our normal clothes, but be sure to bring gloves or else taking pictures in there will turn your hands into popsicles! It was a very “cool” experience though =P. We then took her to see some fun Christmas lights at IlluminOcean at Dana Point. She loved going through the tunnel of lights where they had bubble stations and blew bubbles everywhere. She also really liked looking at the light sculptures and pointing out all the sea creatures too! It’s amazing how lights can bring so much joy to a toddle, it’s very nice to see her eyes light up from wonder and happiness =).
Then all the Christmas festivities began and it was nice to be with all our family during this time of year. You can view more pictures from all our Christmas celebrations from this year HERE!
For New Years, we took Lily to her second trip to the snow and had a fun little getaway at Lake Arrowhead with some friends! We all stayed in a cozy little cabin and got to enjoy each other’s cooking and spend quality time with one another. It was fun to see the kids play with each other and create wonderful new memories. This is also the first time Lily was old enough to actually play in the snow, instead of just sit there and not know what to do. She LOVED sledding, thanks Emmy for letting her play with it, and it was so cute to see her pull the sled back up the hill be herself and climb on, hold on tight and ready to sled down with the biggest smile and silliest giggle down the hill. It melts me heart to see her have so much fun! You can view more pictures from our trip HERE!