We are on track - On the way home soon.

I still remember, before knowing that you have CCHS, before putting you on the ventilator, I hate walking into the NICU.  I still remember, everytime walking into the NICU, my heart will pound, especially when I hear the desat beep.  Most time, it is you that is desating and it makes me upset, the reason is because, each day as I walk in, I pray and hope that they will tell me that your baby seems to have grown out of the breathing issue (Yes... I was hoping) but of course after I found out that you have CCHS, I know that you will never grow out of this.

Also, with you being on the ventilator, I know that you won't have issues or even if you do, just occasionally you will desat, not like last time. 

You were more alert today because they have reduced the pain medication, so, we managed to snap some pics.  I am happy that even though I am still not too comfortable with the trach on you, but at least you seem very comfortable and it doesn't seem to bother you at all, well, maybe a little but unlike the mask, you just hated it.  I can see that you were looking into my eyes, begging me to take off the mask.

We got pictures taken... you look really comfortable and not fussy at all.

Here you are, taking pictures with mama, I like this picture better than the other even though I have no clue why Dada kept asking mama to go lower, clearly there are lots of space in the photo.  We all know he is not as good as mama in taking pictures because if you look at the picture of Dada and you versus mama and you, you know which one looks better and the one that is NOT in the picture has a better skill.

Now can you tell?

Poh poh, Gong Gong and Kau Foo came to see you today as well, while Yee Ko and Big Koko has to wait down there with you.

They were still trying to find your happy spot, best setting for the vent, so, they have been taking the blood gas every 8 hours.  So far, you seem to be doing great.

Here you go... sleeping peacefully with your ventilator.

I am 2 Months today

My dearest baby boy, you turn 2 months today.  Just with a blink of an eye, you are 2 months old.  Though, it is just sad that you have not got to come home yet.  It is sad that I am still trying to sink in the idea of you having the trach.  Yes, mama got here late tonight because mama told you that mama has to work as it is month end.  When I got here, I was excited to hear that your gas is good.  It was 39.  You cannot imagine what I was thinking when I heard that your CO2 was 99 early this morning.

When I got here, you open your cute little eyes and you looked at me.  I told you, mama is here and you just close your eyes.  It just breaks my heart to see you lying there helpless, it's because they needed you to be still and not move so that the trach can heal. Dada is on the way back, he said he wants to come see you before we go home.  I am glad that dada will be home for a week, at least it will be easier on mama as I have someone to go through this time with. 

Before I got here, I took a shower and was listening to Joel Osteen again.  It's about "The Power of Letting Go".  It says that we should not let disappointment make us upset.  It's true, when I thought of it, I really was extremely upset to find out that you have CCHS.  You will have this for the rest of your life, it's not something where you will grow out of.  Thank goodness I let it go fast enough, I have accepted the fact that you have this and I have to wake up.  That's how I found Shelley and honestly, I cannot believe how great God is.  She is always texting me at the right time, when I have questions but feel bad to constantly bug her but she would know the times where I needed someone to talk to, to ask question about your CCHS.  Little Laynson boy, you have to thank God for sending you such a sweet angel, without her, I think I would still be crying and not accepting the fact that you have this. 

Unfortunately, we won't have a 2 month pic with the shirt your brothers wore.  It's ok, you are special... but bare in mind, you are NOT a special need child, you are special because you are YOU!!!!  You made me realize how important life is and how much I need us to be together as a family. 

I just saw pics of Sarah Yang on facebook, saw pics of her little girl with the ventilator on the beach.  It makes me excited knowing that someday, we'll be able to do that too with your brothers.  I cannot wait for you to be playing and running around with them.  I am so glad to be on the CCHS facebook page because each day I see pics of these kids growing and knowing that someday, it will be my turn to post pics of you as well.

I was told that as of today, we think that you are the youngest person with CCHS.  Yes, I never know how lucky I am till now.  Little Laynson, you will have to remember that dada and I will walk you through everything, you don't have to worry.  We promise you that you will not get anything less than your brothers, we will give you everything we can afford to make sure that you have a perfect and normal life.

I love you sweet baby boy!

The day you had tracheostomy - 06/28/2012

I have never felt that bad in my life.  I couldn't sleep that night thinking of your surgery.  I know that the moment is coming soon where you will be wheeled into the OR for the surgery.  I really do not want this surgery for you but I knew that I do not have a choice.  In order to keep you alive and grow up as normal as we can, I needed this surgery.  Honestly, I knew that this is the best thing for you but as a mother, who wants to take a way a normal life from her child? 

I woke up earlier that day, took a shower and headed to the hospital.  Since you were an add on to the OR, we didn't know what time your surgery would be.  I parked my car and as I was walking towards the hospital, the phone rang, an "Unknown" number, that's when I knew, they were telling me that it's about time.  I hated it honestly.  The nurse called to tell me that your surgery will start in an hour.  I said I am walking in now. 

When I got there, I couldn't help but to cry.... you were laying there, sleeping so peacefully with the mask. 

 

I had to take pictures of your neck because I know that for years, it will never be the same.  

I held on to your hand, telling you to not worry and that I will walk with you and hold on to you and NEVER will let you go no matter what happens and that things will just get better from here on.

 

Since they couldn't wheel you down with the vent, they needed to know if they could just put the nasal cannula with oxygen or they have to find an alternative.  Honestly, I was praying that they would just wheel you down with the nasal cannula, that way, I can see you one more time without anything connected... just the feeding tube :) 

I was able to see your last yawn without the trach....

And... was able to see your face one more time without the mask and trach for a long time.

A few minutes after that, Dr Patrick Olamu came... he is the anesthesiologist for the surgery.  He again explain to me what he will do and thank goodness Shelley was here to warn him about the sedative that most CCHS kids have issues with.  He checked and said that Laynson has used it 2 times and it shouldn't be a problem for him.   Soon after that, you were wheeled to the OR, honestly, I had walking down there and seeing you being pushed in for a surgery that I did not want you to have but you had to.

 

Grandpa, Miss Shelley and I waited in the surgery area.  Again like I keep saying, God sent an angel (Shelley) to me, she sat down for the time that you were in the OR, telling me lots of stories, explaining to me about things that I don't know and best of all, giving me hope.... hope that you will survive and will be as normal as possible.  She didn't have to come at all.... but she did, not even my siblings came but a stranger... that I have not even meet would come, hold my hand and walk me through the darkest moment in life.... God still loves me, that's what I keep saying.  Even though it may seem like he doesn't by taking away a healthy baby from me but he did not abandon me.  Thank you Shelley.... I don't know what else to say.

 

Shelley told me to be prepared, at first in my mind, I could envision a trach but she's correct, as soon as I walk into the room.... I just broke down...  It made me so sick till I felt like throwing up.  It's like seeing a knife cut through my sweet baby boy's throat and he was there, laying down lifeless.  At that moment, I honestly regret for agreeing to this.  

It took me a long time to finally have the guts to go close to him to snap some pictures.  He open his eyes for a while, looked around and went back to sleep.  They needed him to not move for at least 5-7 days.  

I left early that day with a heavy heart.  I feel so sad leaving the hospital that day, well, everyday but especially that day because I knew that there is no turning back but of course I know that this is for the better.  I know that by doing this... we are one step closer for you to come home... come back to your family, the one that loves you deeply.  Take care my sweet baby boy.  I am so very sorry that we have to make this decision but in order to keep you living healthy. 

God still loves mama even though he gave you CCHS

Do you know why I say that God still loves me even though it seems like he hates me by giving me such a hard time and giving you CCHS?  End of May, Dr Jenelle Wong called and dada answered the phone.  She told him about another CCHS patient and was telling him about the blog that the other mama wrote.  Of course then, mama refused to have anything to do with it.

Yes, after yesterday, mama know that mama have no choice but to quickly contact the other mom with CCHS.  Do you know how powerful God is?  Let me tell you the story and how it's all connected.  Do you remember, on July 5th, your second brother had strep throat and I had to go see Dr Wong.  When I was at Dr Wong's office, she gave me a letter written by the mom to me, the weird thing is, the email was sent out on July 4th and God arranged for me to go to Dr Wong's office on July 5th, the next day.  Yes, I refused to do anything about it up until early this morning because I decided that I cannot run away from the fact.  You have CCHS and I cannot hide and I have to act on it fast.  The longer I hide, the longer it is to find out about how to take care of you.  I needed to know if you were going to survive, if you were going to grow up and see mama and dada grow old :(

So, I replied to the email and I searched Shelley Colquitt's name on facebook.  I immediately did a friend request.  Early this morning, I was supposed to send dada to the airport but I was too tired, exhausted because of all the news so, gong gong ended up fetching dada to the airport.  At about 7.40am, the phone rang... gosh, I got scared... thank goodness, it is not the hospital.  It's Shelley!!!

I was so grateful, she called me and talked to me for over an hour.  She talked about what she had to go through, when the Phox2B test was finally available, etc and also added me on the CCHS closed group.  Finally, I asked her... how did she manage to get to talk to Dr Wong. 

Here is the story....

She told me that for 3 years, she has never seen any other pediatric other than Dr Goebel.  End of May, Zoey has ear infection and Shelley had to call Dr Goebel's office but unfortunately, he was out on vacation.  Shelley was telling me that she was not excited at all, afraid that she had to explain to this new doctor all about Zoey's CCHS deal, etc.  Of all the doctors, Dr Wong was available and was the one seeing them.  She said that as soon as Dr Wong walked in, Dr Wong said to her, I am excited to see you guys.  She's like... "great!!!"... then Dr Wong said, there is a baby that was just recently born that most likely has this disease.  That's when she talked to Dr Wong and told Dr Wong that she will try to contact us. 

Can you believe it????  How many pediatric offices are there in Dallas?  Of all the pediatric offices... we share the same one.  Do you believe it that God actually has arranged everything for me, I was sent here to US, if I were to have you in Malaysia, I don't know how we can go through this.  We will probably end up in debts with medical fees.  So, that's already a blessing.  Then... God sent an Angel to me.... he sent Miss Shelley to me... explaining everything to mama... 

God still love mama... God still loves you....

GOD STILL LOVE US!

First meeting with Dr Andrew Gelfand - our Pulmonologist

Great.... "Unknown" number calling at 8.40am... scary.... please, not another crazy episode?  I quickly called back to see who called and apparently, it is our nurse and Dr Gelfand wanted to meet with us wanting to see if we can be there in an hour.  I read about Dr Gelfand and know that he is one of the top Pediatric Pulmonologist in the DFW area.  I asked if we can reschedule this for later but the nurse said that if it's later, then it will be abother doctor, so, we quickly rushed to the hospital. 

Again, that morning, as we were heading there, I looked at my facebook and say Joel Osteen posting this.  "If you’ll learn to get up every day expecting God’s favor, you’ll see God begin to do amazing things in your life. You’ll overcome every obstacle. You’ll defeat every enemy."  Deep down inside, I know it's God's way to tell me to stay positive and stay strong".

So, the meeting started with Dr Gelfand telling us, do you know what is CCHS?  Well, the CCHS is also known as the Ondine's Curse, he was explaining abotu the myth which I have read numerous times.  Then, he went on to the signtific terms of CCHS.  Basically, people with CCHS stops breathing or breathes swallow when they sleep and eventually accummulate a lot of CO2.  The normal CO2 level is between 35 to 45 but when the CO2 levels gets extremely high, this people will fall into a coma and eventually die.  So, he started telling us about the plan on what to do and trach is the way to go.

Tears rolled down... I don't want to trach my son.  I cannot do this is what I was thinking.  When we were done talking, Dr Gelfand said, you are quiet, do you have any other questions?  That's when I started crying.... because I have just been trying to absorb everything that he was telling me.  He told us that kids with CCHS will have a near normal life, eventually, they will just be on the ventilator when they sleep but when they are infants, they need to be on the ventilator 24/7 to help them breathe. That way, it will not affect their brain development.  These kids play soccer, volleyball, etc, but if they have trach, the only thing they can't do is swim but if they eventually take out the trach, they can swim.  These kids will go to normal school, they will have a nurse with them, he said Hunter is his oldest patient, he's 14 and he goes to school with his nurse.  When you are comfortable enough, you feel like you don't need a nurse anymore, you can just tell me. 

My question to Dr Gelfand is... why is your oldest patient just 14, is it because they don't live long enough or because you just see pediatrics?  He doesn't see older patients but he also have just been in the DFW area 16 years, so, he's just been seeing younger kids. 

He showed us 2 toddlers with trachs, I just don't like it... I hate it.

He said, I am not even sure why he isn't on the ventilator all these while but I am not going there.  Oh well... I guess he's saying that he should have been on the vent all these while. 

I just feel so sad.... why do we have to go through this?

My poor baby, sleeping there.

Officially a CCHS kid - Congential Central Hypoventilation Syndrome

Yes, we had our conference care meeting yesterday.  Dr Venkat mentioned about posibilities of a trach even though we do not have your results back yet but regardless, what's needed is still the same.  Your issue is your breathing issue, regardless if you are positive or negative, we still need to fix that issue.

Dada was supposed to fly back home tonight, I still remember, it was around 4pm, I took a shower and almost ready to head to the hospital.  I was looking at Facebook on my phone and guess what... this is what Joel Osteen posted "Don't let closed doors convince you to give up, keep moving forward and keep this forefront of your mind, Victory is in my future".  About less than an hour later, dada called, as soon as he said "Hello", I already know that the results is positive, he sounded so sad and depressed because we both wanted the results to be negative.  He kept quiet and went to the airport without saying a word.

When I saw the message from Joel Osteen, I already know that God is preparing me, giving me a heads up that you have CCHS.  I really don't want that results.  Can we just turn back the clock where everything is perfect and normal?  Why us?  Why our family?  Why you? 

How can God make such a cute baby like you suffer?

You look like a cute little puppy on your belly...

Waking up every morning, SHAKING!!!! Another Sick Baby AT HOME???

Have you ever wake up everyday feeling uneasy and shake?  That's how I have been operating EVERYDAY awaiting for the Phox2B test results.  Since they said that it takes 10-15 days to get the results, I have not been well at all.  So.... dada left that week and mama is just too upset.  Mama have been crying everyday since the day you were born but with Dada not being here, it is just making it difficult.

Of course, again, luck is not on our side.  Yee Ko (Laynden) is not feeling well, he has been throwing up and having diarrhea, so, mama called Dr Wong in the morning, trying to see if mama can get Yee Ko in to see her.  Just didn't want to deal with another sick baby.

His appointment was at 2.20pm, I went in to see Dr Wong and when I was there, she was telling me about Zoe and her mama, Miss Shelley.  She said that Zoe looks perfectly normal, when she ask her to take a breath, she takes a breath and she has a pacer, so, she doesn't have a trach anymore.  She was telling me to do the trach ASAP to help your breathing ASAP.  OK, I was not happy at all, I cried and cried because I hate people to talk to me as if you have CCHS... NO... you DO NOT HAVE CCHS!!!!

Anyway, back to Yee Ko, apparently, he has STREP!!!!  What??? How did he get it? Poh poh and Dada is saying that they think it's from the hospital, I said that there isn't any sick kids at the LL but they still think it is.  Oh well....

I went to Dr Vu's office to drop off the paper work so that mama can get paid but on my way there, I stopped at McD to get a Coke.  Yee Ko insisted to drink mama's coke.  The receptionist, Vicki and Alma came to talk to mama, they were concern about you but I was mad because things just were not going right for mama.  You are in the NICU being sick, Yee Ko is sick, Fence is down.... what else? So, when they asked mama how am I doing?  I got so mad and I said, I am about to DIE!  I left the office and a few minutes later in the car, Shelley called, she is Dr Vu's nurse.  She said Dr Vu insist on seeing you tomorrow, anytime is fine, you just tell us... so, I said 3pm is good.  I kinda sense that what I said in the office triggered this appointment and that Dr Vu is concern about mama.  She's a very nice and sweet doctor.  Very caring!

Anyway, mama went to see you after that.  You were virtually saying... Hi mama... I miss you, can you see, you were trying to pick up your little hand to say Hi!

Yes... mama was not happy at all... crying and crying after talking to Dr Wong.  I am DOOMED!!!! 

I was so scared.... mama's pictures with you were horrible.

Mama forcing a smile....

Just talked to the NP, she seem to think that you wouldn't have CCHS since the sleep study and other test doesn't really show that you were having the symptoms and even if you do, you will be a very mild case.  I am not sure if they were trying to console mama or... it's the truth???

First time Dada left for Phoenix after you were born - 6/4/2012

Yes.... Mama was not happy at all because mama was used to Dada being home with us.  For the past month, dada has been home, going to the hospital daily with mama to see you and all of the sudden, he will not be home every night and mama will have to walk this lonely road to the hospital alone?  NOT HAPPY!

So, that morning, mama had to get up early to pump milk for you and then fetch dada to the airport.  Mama always go to the airport on Mondays but not to drop people off :(  Anyway... mama went to the hospital with Koko.  By the time we got here, it was Miss Nicole that was taking care of you.

You must be wondering, mama... YAWN.... what are you doing here so early, you typically do not come here that early?

Koko came with mama because he always drop Dada off.

Koko insisted that he take picture of his beautiful artwork that he did for you.

After that, Koko was hungry.... we went down to have breakfast.  Mama get 3 free meals a day since mama is a breastfeeding mom but guess what??? Koko is eating more than mama... so, mama sent a picture to dada, showing him the "breastfeeding" mom eating breakfast.

After that, we got back to see you and koko was so cute, trying to help you with the pacifier.

Can you tell how much your koko loves and adore you?  He said.... siow siow Shen Shen... come home soon.... get well soon.

After that, mama left since koko can only be in here for 2 hours.  Mama came back that evening to see you.