Lily & Leo

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.

Leo 1 Week Old

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!