First Surgery - Hirschsprungs - 05/31/2012

On 5/28 was the night where Miss Angela took care of you.  Yes, she is one of our favorite nurse, she loves you so much.  She constantly come check on you.  While Dr Alder was explaining to us about your surgery and what is all going on, she let your oldest brother (Laynce) hold you for the first time.  Yes... it was the first time Big Koko got to hold you.  See how cute is that?

Ohh... and while we were busy talking to Dr Alder, Miss Angela feed you 6 oz.  OMG... you were 4 weeks old and you drank 6oz. We felt that you ate too much but on the other hand happy that you are a good eater.  

Poor little baby, at midnight, they NPO again... so, you didn't get to eat since the surgery was scheduled for the next day at 11am.  

So, on 5/30/2012, we were there waiting for your surgery but unfortunately, there  was a complication on another surgery ahead of you and due to that, your surgery was pushed to the next day, so, we started feeding you again.  You just love to eat, whenever we feed you food, you seem really happy.  

Then.... on 5/31/2012, you were the first patient on the list, Dr Magason was the one that performed the surgery.  He again explained to us that they are not sure how long the surgery would take since it really depends on how many times they have to check with the Pathologist.  I still remember sitting in the surgery waiting area, working on month end stuff, it was extremely cold.  An hour later, the OR nurse called and gave us an update, saying that the surgery has just started.... wow, I guess it takes really long to prep for the surgery.  Dr Wong was the Anesthesiologist.  Then.... an hour again after that, we got a call saying that the surgery is done and that they had to chop off about 1.5 inches and it was the first pass and it's a pull through.

Dada and I gave each other a high five because we were so afraid that it's going to be a colostomy.  We were also hoping maybe this will help your breathing issue and that possibly this is the cause of your breathing issue.  

We went up to your room but you were still intubated.  They said that they extubated you but then again you were not breathing that well, so, they had to reintubate.  

There you are, being pushed back to Room 11

We left feeling happy that at least one of your 2 issues that we know of have been resolved.  Now, just praying that this will also help improve your breathing.

Phox2B test - Genetic testing for CCHS

Like Dr Venkat said, he thinks you have CCHS, so, we were told to do the Phox2b test.  Still then, I had no clue what the CCHS is.  Honestly, I have been doing so good at doing research for everything but I refused to google much on your issue because I am so scared... I am scared that I would find something that I do not want you to have and worst of all, I was afraid that I would find out that you will not make it!  It's just so sad...

Yes... I was living in DENIAL, I do not want to know, I want you to just grow out of it and that you are stronger now...

I asked what is the test about, they just told me that it's basically drawing some blood and it will be sent to an outside lab but it would take 10-15 days to get the test results.

Dr Venkat thinks that he seems to think that even if he has this, you will be a mild case, looking at your condition.

That day, Miss Nicole, yes, she's another one of our favorite nurse was the one that did the blood work.  She share something special with us, which is the love for Bulldogs.  That's why we click.  If you are reading Miss Nicole, thank you for taking good care of our sweet baby boy.

The new beginning - Just didn't know what we were getting into.

We got to the hospital early, to make it for the rounds.  That's when we met up with Dr Venkat.  He seem to think that he has CCHS, he said that we will do a genetic testing and that test would also tell us his severity of this.  What is CCHS?  Hmm.... well.... I just didn't know what I was getting into, also, I didn't know that he has to be on a ventilator for life.  Though, we were still focusing on his HD. 

They said that they couldn't do the biopsy till the barium is out.  They did a barium test and it's still in his system, so, until the barium is out, we won't be able to do the biopsy, which means NPO.  Poor baby.... still no food.  He loves to eat.  The last time, he could eat 4oz, and he was then less than 3 weeks old.

We finally got the biopsy done on May 26th but they will not get the results till a few days later. 

We're moving on.... new location - Children's Medical Center of Dallas

Ok, days before we moved you to CMC of Dallas, chay (Loreena) told me to consider.  I refused of course because she said that the CMC of Dallas is sort of like the General Hospital of Malaysia.  Ok... when I was 16, I was admitted to the hospital because I fractured my elbow while jumping on a ramp with the rollerblades and I can tell you, it's just not the best experience.  There was no air conditioned, you sleep with tons of people next to you, yes, you can pull the curtains but there was no room, the nurses/ doctors there were not the friendliest people in the world and the food sucks.  Ok, I know hospital food isn't the best out there too but then, this really is bad. 

I didn't want to move my son to that condition and that was the reason why I refused to move him.  Though, on Sunday night, Loreena told me that out of the blue, her old client, Dr Mark Clay sent her a Linked in request to add her as a contact.  That's when she remembered that he is a Pediatric Cardiologist in CMC.  She immediately call him and he said that if we needed to be moved there, he will contact the head of the Neonatologist to be transferred there. 

He was nice enough to even talk to us on the phone and I still remember, he told us.... if you have  Rolls Royce, you wouldn't want to send your car to a Bimmer Service center, you want to send it back to a Rolls Royce service center.  Not that the Bimmer is not a good place but they both specialized in different areas.  Plano Medical Center is good at taking care of premies as that's what they specializes in, where else the CMC specializes in other areas where other hospital do not know what's wrong with the babies and that's exactly our problem. 

After your second major stop breathing episode, I decided that it's time to move on.  I felt really bad because I know that Dr Powell, the nurses in NICU, especially Melinda loves you so much.  If I moved you, I don't want them to feel like as if I didn't have confident in their abilities and they were nice enough to tell me, they know that I am doing the best for you. 

It was pretty quick, I thought that it would take a few days for the transfer but it just took 3-4 hours to transfer.

We managed to take a picture of you, dada and I, just realized we didn't have one.

 

The paramedics came with all the equipments.  It was so professional.  I've just seen this on TV, never knew that this would happen to me.

Yes, it does look scary but they assured me that you will be alright and you won't feel anything like that.

I was told that you will be on a mobile NICU.  They have the ventilators, oxygen, anything that will be required if anything were to happen during the journey.

That's when we said our Goodbyes to the nurses.

I walked you to the ambulance, through the ER area, I still remember hearing people said... Aww... such a cute little baby, yes you are!

I kept turning back, looking at you, making sure you were not crying as I was not allowed to be at the back with you, I had to sit infront, I just wanted to assure you that you were alright but you seem to love the ride.  This is the first time out of the building,  you have never been outside in your entire life then.

The ride wasn't that bad and long, before we know it, we were there.

They were taking you out of the ambulance.  It was the first time in my life being in the ambulance as well.

This is the beginning of the new scary "unknown" world, little did I know.

You stopped breathing AGAIN???

Ok.... I told the nurse that you are making me stop breathing as well.  The more "stop" breathing episodes I hear, I feel like I too am going to stop breathing. 

Dr Powell called in the morning, telling me that they have to do a PICC line.  Ok... honestly, before you were in the NICU, all these terms are french to me.  I begin researching "PIG" line because she did not spell out PICC to me.  Of course I couldn't find a PIG line on google.... duh.  Anyway.... I was told that she will have to do a PICC line on you since you will be NPO for days.  We needed to make sure that you have a central IV line to make sure that they don't have to keep poking you and that you have a good IV line.

Then, at about 1+pm, I again got a call from you, she told me that she's sorry, they were not able to get the line in and that you stopped breathing for about 30-45 seconds.  They think that Versat was the cause of you not breathing.  I guess if I were to talk to the CCHS mom, it wouldn't take us that long to know that you hare CCHS, all the symptoms that you were showing were clearly related to CCHS, but of course then, I refused to associate myself with CCHS and honestly, I still didn't know what CCHS is.

I still didn't know what I was into.... didn't know the FEAR of the UNKNOWN.

Recovering from the major episode.... but something new? Tummy issues?

We did an MRI the next day, Dr Powell said that since you are intubated, they would like to do a MRI on the brain to check.  By the afternoon, we had a preliminary results, saying that your MRI looks good.  Phew.... another good news but what's the reason for the hoo hah yesterday?

You seem to be more and more alert, thank goodness!!!!

We had the care conference with Dr Powell, we needed to know what were the tests that were done and what is the next plan.  Basically, there isn't much plan because all the test that they know, seems to come back normal, ohh... except for the metabolic test.  That's now what they were hoping, maybe he has a metabolic disorder that causes you to not breathe well?

After the meeting, the next thing we notice is your belly.  Yes... you always had belly issues, they thought that you were allergic to the normal milk at first, so, they switched you to another milk and my breastmilk.  Later, they said that you were probably allergic to dairy (cow's milk), so, they stop feeding my milk as well.  you were on a hypoallergenic milk, it smells and taste awful but you love it.  Your belly went up to 35, it's typically 30-31, so... the nurse alerted the doctor. They stop feeding after your episode but then later started feeds again through the tube. 

Though, the doctor called stating that they did a chest x-ray, it seems like there is lots of gas in there.  So, the doctor called a pediatric surgeon, John Lanoue.  The boys, CJ and mom left since it was already past 1am.  I told them that I will be waiting for the doctor to let me know what is going on and I will be in the waiting area.  At about 2+am, Dr Lanoue came, telling us that he suspect that you have Hirschsprungs.  Ok.... what is that?  He explained to me saying that the HD is a disorder of the gut which is caused by the failure of the neural crest cells (enteric ganglion cells) to migrate completely during fetal development of the intestine. The affected segment of the colon fails to relax, causing an obstruction.[1] In the majority of affected people, the disorder affects the short segment of the distal colon. In rare cases the aganglionosis involves more of the colon. In 5 percent of cases the entire colon is affected. Hirschsprung is also sometimes called congenital aganglionic megacolon.

Dr Lanoue said that we will have to NPO (stop feeding) because we need to do a biopsy to see if he really has HD or not.  Poor baby, you love food so much and now being asked to stop?  Hmm.... you were no longer a happy baby.  Your IV isn't working well and you were known to be hard stick, it takes nurses many tries to get your IV.

I went home, again hoping that this is the reason for you not breathing well.  Thinking that if we need to have a surgery for this, we are done already, and that's the reason of you not breathing well.


 

The major Episode.... one of the scariest day of my life!

I still remember, the phone rang, it was the morning of May 19th @ 7.46 am.  The caller id states NICU... I knew something isn't right.  Dr Powell right away said, Laynson has been a very, very bad boy.  He stopped breathing for 1-2 minutes, had a seizure.  His CO2 level went up to 199 (normal is 35-45), his Ammonia level was 212 (Normal is 40s).  I still remember, she told me that if you and I were to have 199 for a while, we would end up in a coma.  They had to intubate him and now he's fine. 

I rushed to the hospital as fast as I can.  I was crying like crazy because I don't know if he were to make it or not.  When we got there, you were not moving.  I thought you were in a coma.  The nurse assured me that you are still moving, just lethargic.  I was afraid that you were in coma :(

 

I had a terrible headache because I was pretty much crying for hours.  The nurse and Dr wanted to drag me out, kept asking me to go home but I wouldn't leave you.  I wanted to make sure that I am there for you.  Then, at about noon, Dr Powell came stating that your CO2 level came back down to the 50s, that is very, very good.  Though, what caused all these drama and episodes?  We are not sure.  I don't know.  She likes to use a word on you, I don't recall.  It's basically stating that, you are a mystery, she just cannot solve it.  

All the test always comes back normal, comes back good... so, what's wrong with you.  Initially, she said that she thinks you have the CCHS, Ondine's curse but then, you don't require the ventilator all the time, most time, you are on room air, with 1 liter flow, so, she said that if you have Ondine's curse, you would need your ventilator all the time.  Which is weird...

6 hours later... you finally look a little more alert... finally, I am RELIEF!!!!  I look at you and you were finally looking back at me.

And then, a couple more hours later... you were looking even better... PHEW!!!

I still remember, I went back home to take a shower that night and I just broke down and cried so badly.  I was so scared of losing you... I told your dada that I would not be able to continue living if I were to lose you.  Please.... stay strong baby boy!

Things seems to be getting better and better.... Time to wean you off the oxygen

I had a call that morning from Dr Powell, she has been out on vacation and just got back.  She said she was surprised that he is still here.  She said, everything seems to look good.  They think that's it's time to start weaning you off the oxygen, that's the plan... we are on the way home soon.  YAY!!! Good news.  The plan is to bump up the oxygen to 100%, and 1 liter flow and then, slowly do 0.9 liter, 0.8 liter, every 4 hours.  Sounds like a plan to me. 

You were more and more alert, you seem to be able to communicate more with us.  The developmental people came to see you on your 3rd day of life, they said that you were between, abnormal and normal but now... they think that you are right on track.  Phew.... good news.

More pictures of you and mama

You're a big boy, so, they put you in a jumper

Dada feeding you.... still remember you were sweating after that.

Our First Mother's Day together - Proud mama of 3 handsome boys!

Yes, it was our first mother's day together.  Unfortunately, we were not able to celebrate it at home with your 2 other brothers.  Though, I got to celebrate it with my mama, your poh poh and also everyone at home.  We had BBQ at the patio your great grand father made for us.

That's your cousin, SherLi, sleeping in the Sarong Hammock.

You and mama on our first mother's day together, many more to come.

AND.... the Best mother's day present for 2012.....

YOUR FIRST SMILE - Even though you were sleeping.

Breastfeeding for the first time.

The nurse called at about 11+ am, asking me if I have pump as they would like to try breastfeeding.  I was excited as I have NEVER got the chance to breastfeed you.  I still remember being a little nervous, not sure how you would do, if you would take forever to latch like your brothers but to my surprise, you did GREAT!!!! You suck at least 25 minutes on one side but unfortunately, you didn't want to drink the other side.  Well... it was a good start, mama is happy.

Can't help but to take more pictures of your cute little feet.

 

It was a special day.... it's Ah Yee's graduation as well.

My 3 boys - When will you guys get to sleep together?

CJ brought the 2 boys to the park for a while, they both had lots of fun.

That night, we brought your 2 brothers to go visit you and when we got there, they were sound asleep.  Dada had to swap with poh poh, so, we ended up doing facetime and got a chance to take a snap shot of 3 of you sleeping... just that you guys are not sleeping together and in my heart, I ask, when will you guys ever get to see each other and sleep together?

Our daily routine to the hospital - Only your second brother looks forward for it.

Yes, nobody looks forward to go to the NICU everyday except for Laynden, your second brother.  Why??? Because that's the only time he gets to go out of the house.  He would be putting on his shoes right after dinner.

He would go up the car himself and if he could, he would be driving himself there as well.

Since he is too young, he cannot go in, so, he'll be waiting for you in the waiting area.

More pictures of you and mama

 

Mama loves the cute little hat on you.

Bottle feeding for the first time....

Gosh, we were making so much progress.  We were learning to drink from the bottle for the first time.  I still remember, the occupational therapist helped me.  They said that each time you drink, you seem to be desating.  The reason is because you were sucking non stop and we had to "pace" you.  So, what we had to do is, after you suck for 15 times, we had to pull the bottle out if you will not stop.  After 2-3 times, you got the hang of it and you would pause and continue to drink.  You were such a good baby, drinking lots of milk.

Your first bottle fed by mama.

Then... poh poh got to feed you while gong gong admire you.

The first time I got to hold you....

The very first time, I got to hold you.... it was a special moment.  I went to the hospital as usual, not expecting much, don't know what to expect.  There was Dr Powell, doing her favorite dance move, saying that she thinks we can extubate him.  I was like... OK.... so, once we extubate him, I can hold him???  Yea....  Oh wow.... what a special moment.

There you are... in mama's arm, sleeping peacefully.

That was the day where Poh Poh and Gong Gong came and poh poh got to carry you for the first time too.

I love this picture of you, with the double chin, it looks like you are so chubby.

Time to go home BUT.... without you.

Everyday in the hospital, I was hoping that you will get better and leave the hospital with me.  The day came but I got the news that you won't be coming home with me.  It's extremely sad.  With your brothers, we were wanting to go home ASAP, by noon, we were already done packing and headed home but with you, we wanted to continue to stay because I know that you won't be coming home with me.

NO.... it's not normal, the right way is for us to go home with our baby.  It's also sad that I have NEVER hold you in my arms.  For 5 days after having you, I still haven't had the chance to hold you.  I pray hard that the day where I can hold you is close.

I cannot help but to cry when I had to leave the hospital without you.

Here is your big brother, kissing you, telling you to get well soon and come home ASAP.

Then, off we go, headed home.  I was crying on my way home, I turn back and looked at the empty infant car seat where you were supposed to be in.

Time in the hospital....

Honestly, I kinda like staying in the hospital.  It's pretty relaxing, I didn't have to get out of the bed much, it's kinda cool. It's a little easier because I've been there, done that... I know what to expect and thanks to you, my sweet baby, I managed to recover so fast.  I wanted to make sure that I can see you ASAP, so, I force myself to get up so that I can have the epidural out.  I walked to the NICU everyday to see you, I am amazed with myself, how fast I recovered.

The boys came to visit me.

While dada was with you, he took a picture and I took a picture of me and your oldest brother.

They gave me Dandle Doll, it's a cloth where I was supposed to put it on me, so that they can later put it on you, so that you can smell mama.

I put what was supposed to be your leaving hospital shirt on you, hoping that you will leave the hospital soon. 

NICU nurses were so nice, they posted your name on the screen.

Grandpa and big brother came to visit you often.