This is more of mama's feeling on business... why do they always want to threaten mama?

Yes... handling and taking care of you has been really stress, especially you throw your "Avatar" spells, whereby you hold on to your breathe and turns blue and pass out. :(  Then, you get sick every week, it feels like you will never come home :(

But then again... today... mama cried on the way to the hospital because mama feels like mama is failing everyone.  Here is a blog that mama wrote on mama's BubuBibi's business blog.  There were many nice people that were consoling mama... thank you!

Here is the blog:

Sunday, August 19, 2012

Sorry to all customers that we have disappointed!

Well, I have been thinking for a while on whether or not to write this on my blog. I have started a new blog, the one that I have been writing on very frequently to my dearest baby boy. Some of you are aware and some don't that I recently just had my 3rd beautiful baby boy... who is currently 3.5 months old as of today but has yet to come home.

Anyway, I haven't been up to a lot of things every since he was born. He was born on April 29th 2012. Ever since he is born, my life has changed and will never be the same. All of the sudden, without any warning, I am a special need kid's mom. I have been into a deep depression whereby I just felt like hiding in the closet and not come out. For 6 weeks in NICU, we have done test over test over test and everything has come back normal but the question is, WHY does he stop breathing or does shallow breathing? It was that bad till he went into a seizure and had to be intubated multiple times. For those of you who has babies in the NICU before, you probably know what intubation is, for those who has healthy kids, like my first 2 kids, you will never know and will never understand how it is to see your baby that you have carried in you and loved for 9 months suffer with a tube in his mouth just to help him breathe. 6 weeks later, I was told that my son has a rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS), also known as "Ondine's Curse". When I was told about Ondine's curse, it sounded really bad, it's like I have been cursed.... the truth is.... I am! My son will stop breathing or does shallow breathing causing his CO2 to raise. When he was 3 weeks old, he had a seizure due to a CO2 level of 199 (Normal range is 35 to 45). Thank goodness, he did not go into a coma.

As of today, August 19th, I am still in the hospital, we just moved out of NICU last week to the regular ventilator floor. Most of you make small decisions such as whether to put them in a day care or not, whether to use cloth diapers or not... for me, I had to make a decision where by I have never imagined I had to, which is to trach my son. For as long as I have lived, I have never been asked to make such a difficult decision, to me, when I was asked that question, it's like you are asking me to turn off the life support of my son and to let him die. Yes.... it is not the same but to me, it is because you are asking me to take a normal life away from him but then again, I was asked another question, do you want him to live? YES!!!! But I know, some of you probably had to make the decision to turn off life support of your baby and actually had to do it, so... for me, it isn't that bad after all compared to some of you. I cried and cried and when I saw him being pushed back from the OR with the trach and tubes connected to his ventilator, it just felt like I am seeing a knife cutting through my baby's throat.

I HATE walking into NICU daily, there are days where I really have to drag myself there. I needed to see my baby badly but why... why do I have to go to NICU to see him? I just didn't understand. I had 2 healthy boys, I had a normal pregnancy, I had a perfect delivery but why 30 mins after he was born, he was sent to the NICU? At first, I did ask... WHY me? Why am I chosen? Some console me, telling me that God will not give me something that I cannot handle, I ask, is this something that I can handle? NO.... I cannot, yet, I have to pick myself up as I have a family to support, I have 2 other boys that needed a mama and needed food on the table.

I asked my husband yesterday, do you think I can survive by just sleeping 2-3 hours at night and just 15-20 mins naps here and there daily? He said no, and the truth is I tried really hard and I couldn't. During the weekdays, I try to stay in the hospital with him and if my dad doesn't bring the boys to see me in the hospital, I have to drive back home. There are occasions where I fell asleep awaiting for the traffic light and awaken by the honk.

I used to be a girl with goals, with dreams, I am so happy that I work really hard to achieve what I want. I have a day job, I work from 8 - 8+pm in the office, I immediately go back to the hotel (as I travel for work) and work from 9+ to 1-2am daily without fail. I started off with selling a few diapers a week to what I have now. I think of ways to promote by business but after April 29th 2012, a tornado has swept through my life and left me in a total mess. That's my life now. I scramble each day, I cry when I am alone as I needed to show my family that I am still strong and going but the truth is, I feel defeated.

Yet... I have to see message that customers leave me, telling me that YOU SUCK... You have the worst customer service ever, you have the slowest shipping ever. Yes... that's me now... I have nothing but I SUCK in every ways! Thanks for telling me that! It really does bother me and I don't blame my customers... customers are always right. When you have a near perfect (never perfect because grass is always greener on the other side) life... then, a few days late on receiving a product would make someone really mad, I had to be threaten each time... threaten to be given a bad feedback, threaten to be told as the worst diaper company ever.... I am SORRY.... I didn't mean all that I've done. I didn't mean to ship late, didn't mean to be sending the wrong colors, didn't mean to upset anyone at all.

I haven't been going to facebook much for the longest time, if I am on, I am constantly on the CCHS group page, finding reasons why my son is doing this and that and talking to parents, asking them what they went through with their kids, looking at family with older kids to assure myself that my son will live. I don't go much to the regular facebook because I am sad... yes, I envy you guys with normal and healthy kids, pictures of your babies with you guys... I don't. It hurts me so badly. A dear friend told me to cry it out, to grieve... she told me, Laura.... you need to cry, you need to let your feelings out, you lost a child.... you lost a healthy & normal child that you were expecting. You need a period to grieve, yes but I feel like I don't even have time for that. I hardly go anywhere now as I feel really upset seeing people carrying their beautiful baby out, where else, I hardly can carry him much because it irritates him and whenever he is irritated, he holds on to his breathe and turns blue and pass out. For normal human, when they pass out, the brain will automatically send a signal and the kid will breathe again, unfortunately, it doesn't happen for him, once he pass out, if we do not bag him, he may eventually die.

There are several occasions whereby I told my customers the reason why I am late, why I am making mistakes and I still remember a customer telling me... you shouldn't mix business with personal. That's why I said, it took me a while to write this on my business blog since this is personal but the truth is.... I am a human, I have my personal life. I wish I can forget about my personal life and just focus on business and treat as if nothing has happened but unfortunately... I am not able to :( My life is my family, my day job and my business. I cried on my way to the hospital today, I asked myself, will I ever smile again in my heart. I try to smile outside but inside, I feel like I will never smile again. I also remember a customer telling me to stop my business to focus on him, I wish I can.... if the doctors or God can tell me that he will be in this situation for 6 months or 2 years or a definite answer, yes, I will do that but unfortunately, no... this is a life long disease without cure... in the mutation numbers, he is the worst case and I cannot afford to stop my life to just focus on him, like i say, I need to put food on the table, a roof over my family's head. It's not something that can be fixed with a surgery and poof... he's a healthy and normal child.

I just wanted to share my feelings with some of my customers who actually cares for me, thank you very much for keeping us in your prayers. Everyday, I hope to get up and everything that happened these couple of months is just a dream and it's just a nightmare unfortunately... I know that it will not happen. I know that God has chosen me for a reason and I have never blamed him. I just hope that life would be easier on me. Thanks for listening and I know for some of you who still hate me and thinks that I deserve this... I am sorry for making you guys upset and disappointed.

Regards,
Laura
Dedicated to my sweet baby boy, Laynson : http://www.laynson.com

Having a good day SO FAR and mama is loving it!

Mama has been staying here at night with you, that way, mama can help watch out for you if in case you have your avatar act again.  So far, you had 2 this morning and we were able to catch you in time, so, it's was good.  Mama fed you at 8 am, then, 30 mins later, we had the RT come do your "4 hourly massage", is what mama calls it, it's the CPT, Chest Physical Therapy, apparently to loosen up the mucus, which I think it helps. 

After that, Emily (Physical Therapy) came to play with you.  She has been working with you since you were in NICU and now on the floor.  She showed mama how to teach you to roll over, told mama you will be slower but it's ok... eventually in life, you will do all of this things, take your time, mama is not in a hurry :).

Then... we had Julie from Speeh Therapy came and that's the one big thing mama is SO EXCITED about.  She came to watch mama feed you, she said you are doing really well on the bottle.  Yes, a lot of nurse said that trach babies usually do not do that well but yes... you always exceed people's expectation... I am so proud of you little Laynson boy.  So... the big news for the day... she said the "SPEECH VALVE" word!!!!  Mama has been longing for this forever.  I told her that the one big thing that made me hesitant to trach you is not being able to hear you cry.  She said that since you are on the same trach forever, we can think about ordering the speech valve!!! YAY... that's when I hear you cry again.  a REAL cry. Well... maybe after you get it, that's when I can always hear you cry... I will not be that excited... just kidding.  Mama has been longing to hear you CRY and mama want to hear that.

We hope to have a good rest of the day.  Mama will have to continue working on work stuff.  Love you little piggy.

I cannot take it anymore :( I don't want to see you being Avatar again.

It's 3am and since 7am yesterday morning. you had 12 Avatar episodes...  Out of the 12, we had to bag you 2 times.

I am sitting down here crying... I haven't been crying for a long time.  I don't think I can take this anymore.  I am 8 days late on shipping, I don't feel that I am up to standard with my day job, your brothers are probably upset that I am not spending enough time with them, you are turning Avatar so often.  What do I do?

I have reduced sleep to now 2-3 hours, I fell asleep at the traffic lights just now, the car behind honk and it woke me up.  Easier said than done, take it easy... which I have been but I don't think I can.

I really need to be back on the anti depression pills.  I think it is helping me after all.  Your god mama is worried about your mama, even though she's going on a vacation, she made sure to call mama, telling mama to get as much rest as possible because we should be getting you home soon, probably mid of September. 

Going to work on the shipments before leaving the hospital at 4.30am to pick up dada from the airport. 

To be continued....

Special People in your life... God mama - Shelley Collquit

I've already told you how we met this angel... your god mama.  Mama and dada is from a place far far away, but yet, God has arranged for us to meet 10,000 miles away.....even though we've only lived about 200 miles away growing up. Then, there are hundreds of pediatric offices in Dallas, we happen to choose the same one with Zoe and that's how we met your god mama.

I just have to tell you that she is such a special lady.  She held mama's hand through every step along the way with you.  Your trach surgery was the first time we met her in person, then, she came for the first trach change, she came to told the NP that a CO2 of 80s is NOT RIGHT.... she stepped up for you in every way.  She told me that she once wanted to adopt an asian baby but after having Zoe and had to go through CCHS, she decided not to but guess what... I told her... here is your long lost Asian baby boy... he's yours now whether you like it or not :)

I am glad that you have a god mama like her, she taught mama so many things and ways to care for you. 

You need to always remember how blessed you are to have an angel and god mama that was god sent....

And here are your God Sisters... Zoey (CCHS 20/26) & Lauren

How many times in your lifetime do I have to see people resuscitate you?

I am not sure how many times I have to see you being resuscitate?  Why honey, why??? Why do you have blue spells and pass out.  I think either your heart or O2 dropped down to the 20s.  You totally passed out and OMG, a vent floor nurse was using the mask on you to "bag" you while you were totally passed out?  I had to yell at grandma to ask her to get help.  You were laying down unconciously. 

It's really sad.... I feel like I am getting sick, I think it's because I am way, way too tired, on my way here, honestly, I dozed off a few times driving here. 

There are days where I think I can do it... days where I feel crappy.

When I just got here today, you were doing so good.  We took you off your vent and played with you after finish feeding you.   I just don't think I can do this anymore!!!!

Second day off the vent and I am doing 20 mins!

Laynson... I am SO VERY PROUD OF YOU!!!! You have such a big day yesterday.  Yes, yesterday we did only 3 minutes, your sats were great but you kept on coughing, so mama was afraid, mama quickly put you back on the ventilator. 

So, today, as soon as mama got there, mama asked the RT, Lauren, she hasn't taken care of you in ages, anyway, I've explained to Lauren that during the care conference, Dr Cannon and Logan specifically said it is ok for him to be off the vent a little as long as his Co2 isn't crippling up and isn't over 50s....

I have never imagine I would ever get excited with poop and Co2

For those of you that have a normal healthy kid, like 2 of my older boys, you will probably get tired of having to clean poop, tired of listening to them cry not knowing what they want.  I was once there too but after having you.... I find myself in a place where I have never imagined I would be.

I get excited when you poop.... when you release gas (FART).... I love it.... that means that your bowels are working... YAY.  Yes, I had Biology classes in the past, just know that we inhale O2 and exhale CO2... what's the big deal.  I find myself getting SO EXCITED look at what they call the T com where it measures your CO2.  My conversation with our family daily is about poop and Co2. 

I know that the day where you are able to work around your trach and cry.... I will be jumping sky high.  Yes.... appreciate your little one's cry because that's how they communicate with you and you are so lucky to hear him or her cry because there are people like me who does not hear my baby cry.  One day he will eventually but at least since June 28th, I have not heard the cry that I have been longing for.

Overall... tiring but happy day!

Constantly being told that you SUCK!!!!

Yes, this is how I feel... I feel that constantly, customers tell me that I SUCK!!! Yes, I suck.  I cannot answer your email within 2 days, I cannot ship your important diapers withn 3 days.  I cannot do a lot of things.  WHY??? 

I told a customer today that if my life were to be PERFECT now, I wouldn't have to wait for 2 days to answer your email, I would answer your emails within 2 hours.... I would ship the item as soon as you hit purchase and pay.  I would be able to work on my day job stuff and get back to everyone within a few hours... my life now is FAR from normal, do not even mention about perfect.  It will never be normal again. 

Sometimes, I feel that I am badly beaten up.  People constantly make me feel that I am not good.  Even my own dad, I have no clue why is always upset and showing black faces at home daily.  I am very tired...

I don't need people to pity me, I don't need people to feel sorry for me... just give others a chance.  I once told a customer, you get upset and mad over an incorrect diaper color that was sent to me.  I apologized and resent the correct color and she got to keep the incorrect one.  I wish that is my "PROBLEM" and i wish that's the only thing that is making me "jump" but NOooooooooo..... that's not it.

Besides breathing problem, he has belly issues.... he already went for a surgery exactly when he turned a month old but still having issues.  You guys are lucky, you have a normal and healthy baby... you get frustrated when your baby cries, I am overjoyed to hear some sound coming out of my baby because he has a trach and I CANNOT HEAR HIM CRY!!!! 

I think I need to be back on my pills again, it looks like I am going down south these few days, of course not having enough sleep is a big factor.

I just wish that I do not exist in this world, that way, people will not need to get upset with me for not shipping fast enough, people will not be mad and upset with me for not answering them fast enough.  That way, their life will be perfect because there isn't JUNKS like me in their world!

Overdose with Caffeine? Do I have a choice?

My dearest sweet baby boy, it's 5.30am... and I am still not able to sleep.  Not because I am thinking too much nor am I busy playing games on the computer.  It's just that, I don't have enough time to do everything that I needed to.  I am overwhelmed with work, business, worrying about you. 

Please come home soon, I miss you and want to be with you all the time.  We bought paint to paint the house and especially to paint your future nursery.  We will be converting our formal dining area to become your nursery until the day you are ready to move in with your brothers.  Here is a picture of the new color and the color your nursery will be... yes, it's simple, Opal cream color but mama is going to put some cute stickers and pictures of you and your brothers.

Honestly, mama hasn't been sleeping much lately, sleeping at 4-6am almost everyday and only 3-4 hours of sleep.  I feel like a walking zombie but do I have a choice?  As I am sitting down, writing this blog, it's 5.30am, I feel nauseated.  In order to keep myself up and going during the day, I drank at least 3 cans of coke. 

I went to the hospital with dada at 7.30pm, yes, I feel guilty... each day if I don't spend at least 6 hours with you, I feel like a bad mama, I will be beating myself up and feeling like I have abandoned you.  When I got back home, it was close to 2am but I am 5 days late with shipments.  I have testing for work to do.  :(  I remember dada telling mama about the 5 hours energy drink. I needed something to wake me up badly.  I needed to work.  I had to talk to my supplier as I am about to be out of stock on items :( 

I told dada that if you were to be home, I will be able to grap hold of things a lot better.  Please come home.  I think I took too much caffeine today, 3 cans of coke + 1 bottle of 5 hours energy drink is giving me a severe headache and feeling nauseated, in fact, I just threw up :( 

My precious baby boy.... when are you coming home?  Mama is feeling very tired... most times, mama feel like a failure, mama cannot please everyone.  Customers getting mad at mama for shipping late, for screwing up orders because mama is like a zombie most of the time, mama is feeling guilty and mama knows that mama's boss is probably thinking that mama is not taking work seriously, and mama feel so sorry for your brothers because they hardly get to see mama and dada and worst of all, mama feel so bad that you have to go through what you are going through.  When will things be a little smoother in life? 

I know that my depression is again surfacing because I haven't been taking my pills... why?  I cannot take the pills because it puts me to sleep within 30 mins, I cannot afford to sleep... I don't have time to sleep.  I feel guilty going to bed now too because when I lay on the bed, I will be thinking of what I didn't do and what I have to do the next day and yet, I am not able to catch up.  I must have done something wrong to deserve all of this and my poor baby.... you are suffering because of something that I did and I am so sorry!!!

I have been listening to songs on youtube and I found this song...

Unfortunately, this song is for a Laura that passed away... I feel that the Laura that I once knew is no longer living... Think of Laura but laugh and don't cry....  Be happy for me for still having you.

Every once in a while I'd see her smile
And she'd turn my days around
A girl with those eyes
Could stare through the lies
And see what my heart was saying
Think of Laura but laugh don't cry
I know she'd want it that way
When you think of Laura but laugh don't cry
I know she'd want it that way

A friend of a friend
A friend to the end
That's the kind of girl she was
Taken away so young
Taken away without a warning
I know you and you're here
In every day we live
I know her and she's here
I can feel her when I sing
Hey Laura, where are you now
Are you far away from here
I don't think so
I think you're here
Taking our tears away

Towards the end of my day... this is what keeps me fighting and going

YAY... they finally listened to mama, they changed you back to the LTV!

Somehow, they say that Mama Know's Best... I guess that's correct.  So, after a battle with the doctors and nurse practitioners, they finally gave in and changed you on the LTV.  Mira was the RT that day, she came and changed you back to the LTV, within 30 mins, your CO2 dropped from the 60s to the 30s.  I am SO LOVING the numbers I am seeing. 

Look at it son....

I am so excited... you are finally so much more alert, not sleeping as much... YAY!!!!  I told the CCHS mom that I've got my baby back!

Here is a picture of mama and you....

and dada and us :)

This was koko on our way to see you that evening.

Koko playing by your bedside.

Mama left at almost 3am... very tired... good night sweet baby.

By the way, Happy Birthday Yee Ma!

Another Angel in your life.... Grand Aunt Mei Yee

Dearest baby boy... even though you have to go through a really hard time, I want you to know that you are surrounded by angels.  One of them is mama's aunty, one of your beloved grand aunt.  When we found out that you were in NICU and going through everything, she spent her time going to the medium, helping us with everything she can to see if we can get you out of this mess we've got into.

She is such a sweet lady... I don't know what we will do without her as well.  I just wanted you to know to be very grateful for this lovely grand aunt that you have.  I hope someday you will get to meet her and thank her in person.

THANK YOU AUNT MEI YEE!!! We love you so much!

Mama cannot take it any more... mama had to write to Dr Gelfand, your pulmonologist.

So, after seeing your CO2 being so high, I have decide that enough is enough... I had to write to Dr Gelfand.  I was told by him that your Co2 is supposed to be within 35-45 but for 2 weeks, your CO2 is in the 60-80 range.  The reason why you were sent to the NICU 30 mins after birth is because your Co2 was 99 and now the NP is tellign me it's OK to be in the 80s?  I don't think so... so, mama wrote a letter to Dr Gelfand.

Here it is:

Laynson Lim - CCHS Patient - DESPARATELY NEEDING HELP‏

From: Laura Wan
Sent: Wednesday, August 01, 2012 1:18 AM
To: Brenda Steed
Cc: CJ Lim
Subject: Laynson Lim - CCHS Patient - DESPARATELY NEEDING HELP

Hi Dr Gelfand: This is Laura, Laynson's mom. My family met up with you end of June after we found out that Laynson has CCHS.

We called you a little over a week ago as we were not happy that our son is not given a rate at that time causing his CO2 to spike to the 80s. You talked to Dr Moore and finally he was given a rate of 20 with other different settings, it was July 22nd then.

Today, it's August 1st, my son's CO2 is still at 40-50s awake and 60-80s asleep. I am really upset because I remember that you specifically told us in the meeting before we left the room that the CCHS kids are preferred to be kept at 35 CO2. Yes, I understand that it is not perfect and that he won't get a Co2 of 35 all the time, and I do agree that if we can keep him at 35-45, it will be great but not at 40-80s.

For 2 weeks now, we are at a high CO2.... he sleeps most of the time and yes, to the nurses, he's a "GOOD" baby because he doesn't wake up much. We notice that if his CO2 is high, he sleeps a lot, he's 3 months old and he should be more awake.

I talked to several CCHS mom on the forum and they all manage to keep their kids at 35-45s... I am very frustrated and I feel that each time I talk to the nurse practitioners, they would give me reasons that they are ok with his CO2s being in this range of 40-80s. We are on the Trilogy now and I talked to several parents and they told me that they prefer the LTVs on infant rather than the Trilogy. His Co2 was in the 20s to 40s when he was on the LTV even at 0 Rate but once we changed to the Trilogy, a few days later, we just didn't do good and my problem is at the rate of 20 versus now 40 awake, 50 asleep, we are still looking at the same Co2. This DOES NOT make sense to me at all. I am not a nurse, not a doctor and deinfitely not a pro in any ventilators but when I look at a the numbers, 20 rate versus 50 rate, I would assume that his CO2 should be a lot better at the rate of 50 but no.... it's the same.

The last pulm that I know that saw him was Dr Sanchez, I need someone to help me get him changed to the LTV and help us lower his Co2. I spend my time reading, talking to not only to Shelley but other parents out there and I have a lot more knowledge today then I had a month ago and definitely understand that my baby shouldn't be having such high CO2 for so long.

Besides that, I am not sure why there is a strong foul smell from his trach, yes, I agree that it doesn't look too bad but the smell is just horrible. He also have a lot more secretions and they are yellowish.

Dr Gelfand, I feel powerless and helpless right now as I feel that I cannot help my baby. It's not that i am saying that the nurse practitioners and the neonatologist are not doing their job nor am I saying that they are not good but I just feel that we are not going anywhere. We are back to square one with his respitory status. All the reasons given are just no longer acceptable to me if his numbers are this high.

Please help us with his vent changed back to LTV for me to just try out again as I rather much prefer to try something else than to just keep on sitting at a 40-80s Co2. The ONLY reason why I trach him is because I needed him to be ventilated properly to ENSURE that it will not affect his brain development. I was told by them that it's ok to have high CO2, it wouldn't affect his brain development, but I have heard that chances that he would have a seizure and potentially fall into a coma if his CO2 is high, which he did on May 21st, he had a seizure with the high CO2. When I brought this point out, I was told that he wouldn't at this rate... so, I asked, tell me a number but they couldn't tell me a number too, which I understand, different people will react differently to different situation BUT do I have to wait for him to have a seizure and worse case, do I wait till he falls into a coma before I know the number? Today, his CO2 on the T-Com rised up to 128 from 70 within 1 hour. They claim that the T-Com is not correct, I asked for a gas but didn't get one. Yes, an hour later, he is setting at closer to 70s but that's double of what I was told the "ideal" number is.

Please help us out. We really need someone to do something for us, I have no choice but to get your email from Shelley as I needed to stand up for Laynson and make sure that he is going to get better. We will be having a care conference on Friday with pulm, GI and the neonatologist, I was told that Dr Cannon will be the pulm in the meeting and I was told that on Friday at 3pm is when we can discuss about changing the vent. I really would like them to change it right away and do not want to wait for Friday. If anything happens to Laynson, who is responsible? I have come this far, I do not want anything to happen to my baby, I cannot afford to.

Regards,
Laura