Happy 4 Months to me sweet little prince Leo! Leo weighs in at 11.25 pounds, stretches 23.5 inches, and head measures at 15.25 inches. He is still under 0 percentile but he is growing on his own curve and that’s the important thing. He is 5% in height so I’d say compare to his weight, he’s a tall boy! hehe. Leo has been having some dry skin and it’s too even all around to be excema so his pediatrician feels it’s probably related to his tet18p, so he recommended putting Aquafor on it. It really helped a lot and I think in a couple days his skin will go back to it’s super soft baby skin that everyone is so jealous over! Leo also had his hearing diagnostics again last week and I am happy to report that his hearing is now normal! He can now hear the low tones just fine and there’s just some remaining fluids in his ears. They suggested him see an Ear Nose Throat doctor but his pediatrician says he’s still pretty small so lets just wait it out a little longer and see if it’ll drain naturally.
Leo has been doing well in his therapy sessions, he’s had 3 so far. He is working on his motor skills and working on his reaching and grabbing skills. He is also working on tummy time to strengthen his neck as well. His therapist, Amy, said that development wise he is almost at the 4 month mark. We just need to continue working with him with, but overall he is doing great! He is cooing a lot more now compared to just a couple weeks ago! His voice is super cute!! Leo is very happy and calm and loves to play. Amy said he is a very social baby and loves people, especially his mommy! She said that I am his motivator and that he will always try to find me and see where I am, so I will be his toy and try to get him to look up at me during tummy time, and encourage him to push himself up to find me. He has been doing really well in terms of movement though, he almost rolled over from back to tummy all by himself! He is very good at rolling onto his side though. He likes to sleep on his side since we put him on his side to help him digest and in case he throws up, so I think he prefers that now. His feeding is improving a lot now too, he takes the bottle a lot quicker now and can finish it in about 20-30 mins now! Once in awhile it’ll still take him almost an hour, but he’s doing so much better. He occasionally throws up but now it’s down to maybe once a day instead of twice a day with some small spit ups in between. I’m so happy that he’s overcoming so many obstacles that are put in front of him. Leo is so amazing and strong, he is my inspiration! I’m so proud of him!!
Lily has been such an amazing and wonderful loving sister as well. She always gives Leo kisses and has been doing really well with him being her new roomie too!! Lily is so silly and has such a big beautiful personality, I just love her to pieces!! Her current favorite shows on netflix and youtube are Octonauts, Masha and the Bear, Dragon Tales, and Peppa Pig. She also recently discovered Handy Manny and My Little Pony too. She loves strawberry and watermelon ice cream (aka frozen yogurt haha). She has a ginormous sweet tooth, I think that’s mommy’s fault…hehe…, and she is so sweet, helpful, and loving. She pretty much talks like a normal little person, it’s so amazing how big her vocabulary is. Sometimes she articulates certain spots in words that makes her sound like she has an accent, it’s super cute! Lily loves to cut and glue paper, paint, do lots of drawing and arts and crafts. She loves playing with bubbles, balls, and tools. She also likes books and reading stories out loud too. She loves to wearing dresses (particularly the “beautiful one with all the colors” that I made for her, and head bands as well. She is so bright and cheerful, her happiness just explodes from her little body. I love you so much Lily, you’re my amazing little Lily pad!
Enjoy some videos of the kiddos below!!
It’s been 2 years since my heart and world was shattered, and here we are, 2 years later, and my heart is still in pieces. The past couple weeks, I just keep thinking about what was going on 2 years, where my mind was, recollecting all the events leading up to this day… I don’t do it to relive the pain, I do it because I wanted to remember. Some people may think that’s crazy but I know I’m not crazy, I’m just being a loving mommy. I wanted to remember how much hope I had, even after the doctors told me that there was not chance and that I need to schedule a procedure, but I just kept hoping so hard, wishing and praying with all my might, that maybe some how, if I loved my babies so incredibly much, that they will come back to me and live again. Even though I lost them in the end, it was a good feeling to have hope. The hope of still possibly having a future with them, having an amazing life and sharing adventures and memories with them, naively kept me happy until the very end. I think that’s probably what made the 2nd loss more painful, because I knew there wouldn’t be much hope once I found out, and the pain was just so unbearable because I knew that hope this time would not lead to a miracle. The pain was immeasurable, and it will always remain, but I must remember, hope brings courage. I can’t let fear of failure, loss, disappointment, or heartache, prevent me from pursuing my hopes and dreams in life. That courage led me to my amazing prince Leo. Leo is my sweet wonderful rainbow baby. He does not replace my angels, or fill in the broken gaps of my heart from the losses, he brought my new life, and gave me a new heart that is stronger and better than before. My broken heart remains for my angels, not to remind me of my sadness for them but to have them close, and in my heart even if it’s broken. That makes me happy because they will always be a part of me.
As the years go by, it does get easier to live my life as normal as possible, but around these significant dates, I can’t help but feel the pain, just like it was yesterday. It just comes back at random moments, but I don’t think it’s a bad thing. It makes me feel close to them, and although I’m sad, I’m ok. I think it’s natural to feel that way. They taught me a lot about life, they gave me a new perspective and showed me what really matters. I will try my best to live that life for them, and make them proud.
I designed this ring, as a keepsake I guess, of all my children. The two center stones are Lily and Leo’s birthstones, alexandrite, and their names are engraved on the sides. The two outer diamonds are for my two angels. Lily and Leo’s birth stone is really cool because in certain lighting, it will have a certain color to it. In most light settings the stones will look purple-ish red and then under very iridescent lighting, it’ll look more red, and in natural sunlight it’ll have more of a blueish teal color. I love that it changes colors like that because I feel like my kids will constantly be growing and changing into amazing human beings and it just reminds me how nothing lasts forever, so cherish each moment. However, they do say “diamonds are forever” and so they represent my angels the best. This ring means so much to me, and is possibly my most valued piece of jewelry I own, because I feel like I’ll always have something beautiful to carry with me, that represents my darling loves. I’m so happy that I got this made, and that I can look at it every day, and smile, and think of my kids. This ring is unique, one of kind, and beautiful, just like all four of my children.
October 15th is Pregnancy and Infant Loss Remembrance Day, please join me in the Wave of Light and light a candle for my angels, and any other angels you may hold dear to your hearts. I am very glad there is a day that is especially designated for them.
Happy 100 Days Leo! Leo turned 100 days old last week on the 15th and now he is 15 weeks and a day old. He weighs about 10.6 pounds. He’s only gained 0.6 lbs in the past two weeks, very slow progress but I suppose that’s better than nothing. He has also been having trouble keeping in his food and would throw up a couple times a day, but he’s really sweet and would just give you a smile to let you know he’s ok afterwards. As long as he doesn’t go under 10 pounds, then he is fine. Also, he’s been really constipated lately too due to the high calorie formula, so his doctor said 30ml of pedialyte a day should help! We upped his food a couple days ago so now he should be taking in 105cc at each feeds, that’s about 3.5 ounces. He smiles so much now, especially when I’m talking to him and playing with him. He loves any kind of mobiles and would be entertained forever by a spinning or stationary mobile! He’s very curious and alert and loves to observe everything and just take it all in. He also started sleeping through the night last week, about 10-13 hours straight, and is doing great as Lily’s new roomie! She was very excited when I asked her if it’s ok for Leo so sleep in her room and she said Yes and always gives him a kiss goodnight before she goes to bed! She’s the sweetest big sister ever! I’m so proud of her.
Leo had his first Early Start therapy session today and he did really great! His therapist, Amy, start to do some tummy time with him and he did the best tummy time so far! His head was all the way up and help it for a few seconds several times! She showed me a couple strategies to help support him and encourage him with tummy time so I’m excited to work with him more on that. Also, she did some play time with some songs and tested his tracking as well. She said he tends to tense up his toes and fingers, so she suggest we play with him and do some stretching and certain play activities that she showed me, to help him relax and loosen him up. I feel like Leo will be in great hands with Amy and I can’t wait to work with her and Leo and watch him grow and develop into an amazing man. He’s already doing so great, I’m so proud of him!
Overall, it was a great first session. It seems like he is pretty well on track for the most part. He’s not cooeing as much as but his tummy time is getting there! It was a little emotional personally for me to have the therapist work with Leo, not because Leo was delayed or anything like that, I just got emotional inside because life is just so crazy. Even thought I’ve been through the first 3 years of motherhood with Lily, it’s like starting from scratch again with Leo. I do feel more prepared in certain things but the session today just made me realize how much more I can do, there will always be more that I can do for both of them. Sometimes I just feel helpless and lost and not knowing what else I can do to help Leo or not knowing that there are all these other things that I can do for him in general. So having her expose me to all these little activities and exercises definitely gives me hope and so much more of an appreciation for her and the resources available to us. Parenting will always be hard work, and I’m more than willing to put all my love and effort into giving them the best chance at a wonderful life. I’m very excited to do whatever I can. I think that’s the important thing, not just to have the desire but to have the motivation and drive to be a great parent. The smile on my kids’ faces tells me I’m doing a wonderful job, and keeps me going.
Also, can’t forget about my sweet beautiful baby girl! We took her to Billy Beez at the Anaheim Garden Walk this past weekend and she loved it!! She was so excited before we even got there. We played for about an hour and a half and there were still tons of things she didn’t get to play with yet. She even passed by an area that had steering wheels and she goes “oh, I didn’t see that yet” haha, so cute! She’s the joy of my life. I love her to pieces!
Happy 3 Months my little prince Leo! Leo weighs 10.05 pounds now (still under 0 percentile but he’s growing so that’s all that matters) and stretches 22.5 inches long (3 percentile)! He is growing bigger and stronger each day and he developing into such a bright and happy boy! Leo is starting to smile more now and is very alert and likes to look at his surroundings and just take it all in. We are letting him sleep for a 5 hour stretch at night but we will start to let him sleep longer now that he’s gaining a decent amount of weight! He feeds about every 4 hours, and takes about 95cc per feeding. He still throws up now and then, especially when we increase his intake, and he takes about an hour to finish his bottle, but lately he’s starting to take maybe 45 mins! Leo had his hearing diagnostics a couple weeks ago and for both ears, his high and mid tones are normal but he has trouble picking up the low tones. He has more trouble in his left ear than in the right. The doctor thinks it could be due to fluids in his ears that prevents the ear drums from moving properly but they need to check to make sure it’s not nerve damage, and they couldn’t test him at the time since it needs to be super quiet for the test to take place and by the time it came to that portion of the test, he was already awake and feeding (to keep him from shaking the equipment off his head and ears) and the sucking of the bottle was too loud for the test. So we will come back end of September to see if it’s due to nerve damage or if it’s just fluids. If it is just fluids then eventually he will be able to hear low tone sounds but the fluids can come back. If it’s nerve damage then it will be permanent and the low tone sounds will be very soft and hard for him to hear, but it’s not serious enough for him to need a hearing aid. I think that’s pretty good outcomes!
Check out these video clips of Leo during his tummy time, making silly faces, and some bonding time with his Ông Ngoại (grandpa)!
Overall, Leo is doing so great and it makes me super happy! Sometimes he does a vigorous head shake that’ll be on and off for 10-15 minutes, and after doing some research on the trusty internet (haha), I concluded that it could be due to blockage inside his ears and so it’s probably bothering him and he’s trying to get rid of the annoyance. I would massage his ears when this happens and he actually calms down so I feel like that could be it. He is so calm and mellow and happy, it just warms me heart to be with him. I’ve also met with a case worker from the Regional Center of Orange County and she is setting Leo up with an in-home infant program for babies with special chromosomal needs. A therapist will be coming once a week for an hour to work with Leo and make sure he’s developing on track. If he is showing any signs of delays or needs help reaching his development goals, the therapist will work with him to get him to where he needs to be. Also, if the therapist feels that Leo needs extra help from an occupational or physical therapist, then she will make that recommendation and get that set up for him as well. This will be great for Leo regardless of delays or not because this will only help Leo become a healthy strong and smart individual! Leo also went on his first family vacation to San Diego and got to go to the beach and watch his first sunset and he loved it!
Also, Lily is such an amazing big sister to him. So far, she hasn’t shown any signs of jealousy! I try to be very conscious about how I treat her when Leo is around and even when other people are interacting with Leo, I try to make sure to give Lily attention too so that she doesn’t feel like everyone is so focused on Leo that we forgot about her. Whenever she comes home from school, she always asks where her baby Leo is or if she sees him she goes up to him and gives him a kiss! She’s so super sweet! She likes to hold him and always asks to feed him and say he’s hungry and needs his milk haha. She likes to watch us change his diaper and would sit and watch him get a bath too! She amazes me so much and I cannot be more proud of my precious Lily pad.
Lily also started the new school year at LePort a couple weeks ago. She is really cute and wants to bring her baby Leo to school with her too, so I thought it would be cute to take this picture with Leo inside her backpack haha. Lily also made a new friend at school, a new student named Zoey and her teacher Ms. April says they’re inseparable! That’s really cute that she can make friends so easily. She’s still such a happy and spunky little toddler. She talks so much now and speaks in complete sentences, it’s like she’s a tiny person! You can read some of the super cute and clever things she says HERE. She understands everything I say and hears everything too. She’s always paying attention so its harder to get things past her, she’s definitely a smart cookie! She loves to draw, paint, color, and do all sorts of arts and crafts. I feel like she’s definitely my mini me! Haha! She also likes to paint her nails, wear hair accessories, dresses (no pants!), and is very into sandals now since she sees us wearing them all the time. She also still loves minions, she likes to play in her kitchen and make me a “special lunch”, play with play doh and now legos! She also likes to play with her toy cars and guns as well! So well rounded! Her favorite shows are the moment are Masha and the Bear, Octonauts, Dragon Tales, How to Train a Dragon, Cinderella, Wreck it Ralph, and the Minions Movie! She has moments where she’ll be very good at eating but then other moments where she hardly eats. She’s so easily distracted at home but when we do go out, she tends to be better at eating, probably because there’s no toys to play with haha. I love you my Lily pad, you are so wonderful and amazing, you light up my life! Happy 3 months Leo, you are such an amazing little fighter, I love you so much!
Here’s a couple videos of Lily being a wonderful big sister burping her baby brother and then another video of her at Target, and then one of our fun at the pool together!
Happy 2 Months to my sweet little prince Leo! Leo is now 8.5 pounds and stretches 21 inches long! He is still under 0 percentile in weight but is about average in height. He’s doing a good job growing so it the percentage doesn’t really matter. Last week has been having a hard time keeping down his food and has been throwing up and spitting up a lot so we took him in to see the doctor. He said since Leo is growing, we need to up his medication dosage from 0.8ml to 1.0ml to keep up with his weight. His stomach is also small and doesn’t stretch as easily so he can’t absorb his food fast enough to keep the high volumes of food. This gives him little room for all the milk he needs to drink so he ends up spitting it up or pooping it out. So instead of increasing his formula by 5cc’s every 5 days, we will just play it by ear and see how much he can handle without throwing it all up or pooping it right out. The doctor did notice that his actions are more like a 1 month old rather than a 2 month old and so he thinks his development is related to his size. I’m not quite sure what that means in the long run, but the important thing is that he’s growing stronger each day! He is still super chill and easy going, he hardly ever cries and isn’t fussy at all. He likes to sleep all day and night and usually we have to wake him up to feed him. He sometimes does like to stay awake for a little bit after feedings, and when he is awake, he is super alert and is attracted to light. He also likes to follow my voice too! He is such a sweet little baby!
Last week, Kimberly from the Regional Center of Orange County, an Early Start Service Coordinator, came to assess Leo and to tell me about their infant program for kids with specials and developmental disabilities. Normally she would have to check for eligibility but due to Leo’s diagnosis of Tetrasomy 18p, he automatically qualifies for the program and it’s all covered by the state too. She told me about how the program would work and gave me some more resources and support group pamplets as well. So in a couple weeks, Victoria, Leo’s new case manager, will be doing the in-home infant program with Leo, for an hour once a week. She will meet with me and Leo and go over his Individual Family Service Plan (IFSP) and put therapy services in place for Leo. This is mainly to work with Leo to keep his developments on track and if he needs extra therapy then they will provide the help he needs. So overall, I’m grateful that they have these programs and it will only help my little Leo to succeed!
These past 2 months have been a crazy emotional roller coaster but it makes me so proud and happy to see my little prince grow bigger and stronger each day. I just have to mentally prepare myself that set backs happen and that they are only natural. I just have to keep on having faith in my little man and cheer him on every step of the way. He makes me so happy and I love him to pieces! It also makes me super proud that his big sister Lily loves him so much. Everyday she comes from and always asks where her “baby Leo” is and loves to watch and help whenever she can. They are my world, they melt my heart. Happy 2 months be littlest love! Mommy loves you so much!
May your life be blessed with love and joy
May angels guide you from above
May your heart be kind your spirit strong to see the good and right some wrong
May the world be a better place because you came and shared some space.
Congratulations to my precious Leo on his Baptism this past weekend on July 25, 2015! There was a time when we thought we’d had to learn how to baptize you at the hospital right after birth because we were told that it would be too late to wait for a priest to come and do it. There was a time when we didn’t even think you’d make it past a few hours of life, let alone make it to birth. Fast forward to the present, at almost 7 weeks old, we are now able to have a proper and private baptism, and celebrate your Ngày Đầy Tháng and Homecoming celebration. Thinking about the journey you’ve been through, how much you’re endured and overcome, makes me very emotional and overwhelmed with appreciation and gratefulness. Thank you so much to Father Kiet for coming back to St. Norbert Catholic Church to baptize our baby Leo! The baptism was bilingual (mostly Vietnamese) but also very intimate. I am happy that we got to have a special private baptism just for our baby Leo.
We then had a celebration at home for Leo’s Ngày Đầy Tháng and Homecoming! Before the Baptism, our family came over to celebrate with us, and our friends came over afterwards. Since we didn’t have a big fancy baby shower for Leo, I decided to go all out for his celebration. I made all the decorations myself, and bought flowers from our local flower shop at Visser’s Florist. I also made all the desserts myself minus the cake which we got from our usual bakery, Givral. I decorated the cake though, and made panna cotta with fresh strawberries, kiwi and blueberries, mini chocolate cupcakes with swiss meringue frosting, vanilla macarons, orange blossom macarons, matcha green tea macarons, and strawberries filled with whipped cream cheese frosting. I also had Leo’s announcements printed out for everyone to take during the party! Special thanks to the wonderful Mieng for photographing the amazing photos of my precious Leo!!
Special thanks to our cousin Steve for being Leo’s Godfather! We know Leo will be in great hands and that Steve will do a wonderful job loving our Leo and guiding him through his journey with God. Thank you so much for being there for our son and for all that you will do for him in the future! Thank you to all of our friends and family who came to love and support our baby Leo as well. Leo is so lucky to have all of you in his life. We love you all!
My little prince Leo, I am so in love with you and so proud of you. You are so amazing in your strength and you are such an inspiration to watch. You’re such an incredible baby and I can’t wait to watch you grow even stronger, smarter, more brave, and healthier! I know you will grow up to be an amazing man, but until then, I will enjoy you being my precious little baby. I love you so much my wonderful baby Leo, congratulations on your baptism and everything you’ve accomplished so far!
Thank you Leilani and Kenny for taking pictures for me! See more pictures from the festivities HERE.
Happy 1 Month Leo! Leo had his follow with his pediatrician yesterday, and it also happens to be right around his 1 month as well. Leo currently weighs 6.65lbs, stretches 20 inches long and has a head circumference of 13.5 inches. He is below zero percentile in weight, 2 percent in height and average in head size. Due to his underlying chromosome disorder, the important things here is for Leo to continue to eat and gain weight and ignore the percentiles for now. So Leo will have a follow up in 1 week to make sure that he is gaining weight. Leo is currently on Similac NeoSure 24 Cal formula and feeds about every 3-3.5 hours and drinks about 30-50cc per feeding. Dr. Wang also said that so far Leo shows no signs of delays and that he has really good motor and muscle skills!! Go Leo!!
He is also a very calm and easy going baby, just like his sister Lily when she was a baby! He just eats, sometimes falls asleep halfway through feeding so that gets tough, and then burps and catches his second wind during feeding, and then goes right back to sleep when he’s all done. Sometimes he will be alert and stay awake for a little bit after feeding otherwise you can just put him in his crib and he’ll put himself to sleep! What a good boy Leo! He tends to smile the most after a feeding too, maybe because he’s full and happy from milk coma.
Since leaving the NICU, Leo has been doing pretty well with his feeds for the most part. Lately he would slow down on some of his feeds and get sleepy and not finish, so I just let him sleep a half hour longer to give him a little extra rest so he can finish more of his feeds next time around. He has to go for his hearing check up in a couple weeks, and do his kidney ultrasound follow up once he reached 10 pounds, so that will probably be in a couple months. Other than that, Leo is adjusting to life at home very well! I am super happy to have my precious Leo home and I can’t wait to celebrate many more milestones with him and watch him grow before my very own eyes! Keep growing strong baby boy, you are doing so great! We all love you to pieces!!
Enjoy this video I made of Leo’s journey during his first month of life!! He is so brave and such a strong fighter, I cannot be more proud of my baby boy. I love you so much Leo, you warm all our hearts with your presence. You are my littlest love, my hope, my rainbow at the end of a storm.
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…