Monday, November 17, 2008

A sample of what's going on in my brain...


Unbelievably busy. I wish there were about 12 more hours in a day. My schedule consists of generally the same routine -

Wake up
Feed Christian breakfast, wash him up, get him ready and take him to school
Come home, wash up and get ready
Go to the hospital - hang out with Lauren, talk to the doctor, nurse, respiratory therapist and anyone else who's helping her. Stay there for about 2 hours.
Pump (either at the hospital or at home depending on how much time i have)
Do errands - grocery shop, target run, dry cleaner, etc.
Come home and...
Wash dishes
Wash pump parts
Start prepping for dinner
Go pick up Christian from school
Come home and if Ben can leave early, he'll meet us at home to give Christian a bath...if not, I have to give Christian a bath
Make dinner
Pump (eat before or after pumping, depending on the time)
Clean up
Wash dishes
Pump (while Ben gets Christian ready for bed)
Go to the hospital
Come home (around 11pm)
Pump (while Ben starts washing the pump parts)

I hate pumping - it's exhausting. But, I have to continue doing it for Lauren. That's the only thing I have to offer her right now. I want her to take breastmilk for as long as she possibly can. I'll pump for 2 years if I have to.


If I were still pregnant, I'd be 29 weeks 1/7 days today. Lauren is now a month old. Or, -11 weeks 4 days old. I know, it's confusing. There's several ways to place an age on a preemie baby. There's "actual" age, which is the day she was born - so she's a month old. And then there's "adjusted" age, which would be the age she would've been if she was born on her due date of Feb 2, 2009 - hence, the -11 weeks old age. This is why preemies are considered "delayed" - So when Lauren's 1st birthday comes around, she'll be the equivalent of an 8 month old since she was born 16 weeks early. It sucks in that sense because on her dohl, she'll still look and act much like an infant. They say it generally takes 3 years for preemies to catch up - mentally and physically. I'm okay with that to a certain extent. I know I shouldn't be worrying about things like this but I'm already concerned about annoying people comparing my baby to a full-term baby and saying shit like, "oh, she's so small" or "she seems younger than that.." I don't want to have to sit there and explain to them that she was born 16 weeks early but I also don't want them to come up with their own conclusions either. (I know, this shit is so irrelevant but hey, it's what's on my mind right now so I'm writing about it.)


Lauren got off the ventilator a few days ago and now she's on a machine called a SiPAP which is like the CPAP except instead of continuous air pressure, it's a certain amount of breaths per minute. We're hoping she gets off the SiPAP and eventually back to the nasal cannula. The SiPAP looks so uncomfortable and she really hated it when they first put her on it. She was kicking and flailing her little arms and crying. It was so sad to watch.


People often ask me about how Lauren's doing. I don't know how to answer that, really. I say, she's doing okay and usually leave it at that. Generally, ppl think that since she's alive and i'm not talking about her having any brain bleeds or something dramatic, that she's in the clear and that she'll just grow like a regular baby, the doctors will fix anything that may come up and then come home soon. Well, not exactly.

While I was pregnant with Lauren, I often referred to her as the "muffin in my oven". So try to imagine cooking a muffin in the oven...and you're supposed to bake it for 40 minutes. And let's say the oven stopped working and the muffin was only able to cook for 24 minutes. It's not going to be completely cooked, right? There will be some wet spots, it won't be totally risen, it'll still be doughy in the center and it'll stick to the sides and if you fiddle around with it too much, it'll break and you won't be able to put it back together again. It'll be super fragile.

And let's say, you take it to the muffin doctor and the muffin doctor doesn't have as good as an oven as you did (because no oven is as good as the one you had for your muffin) but he's got a make-shift toaster oven that he's going to try and put your muffin in and try to cook it some more to make it just like a 40 minute fully cooked muffin. He tries to maybe add some more dough to help it rise and he pops the muffin into the toaster oven and tries to cook it. Your muffin was used to being cooked at 350 degrees in your oven but in the toaster oven, he has to tweak it, little by little, maybe start it off at 275 and then slowly increase the temperature. He lets a little time pass and then checks the muffin again. And he sees that the muffin isn't quite cooking right so he tries to do something else - maybe add some more flour or more yeast and tries to cook it some more. He tries to fine tune whatever he can, to make the muffin as close to a fully cooked muffin as possible. He may get pretty close - from the outside, it may appear fully cooked but on the inside, it may still be doughy or maybe even too dry. You just never know.

Sometimes, you can hit the jackpot and get the muffin pretty much like a fully cooked muffin inside and out - other times, not so much. I'm hoping we hit the jackpot.


Btw, Lauren is now 2 lbs! She's a tiny bit over 900 grams. She gained about 15 grams yesterday but then lost about 5 grams today. So she's teetering back and forth on the 2lb mark.


Christian is our joy and blessing through all of this. People often say how hard it must be to have to take care of a toddler at home while having a baby in the NICU. Sure, it's alot of work but I wouldn't have it any other way. He's truly been our rock in all of this. His smile, his sweet sweet literally melts away all the stress we're going through.

He's already such an awesome big brother. He often talks about Lauren. He says things like "Ishtian want to go see Rauren (he can't say the L yet) and give her hug...rike diff (aka 'like this')" and then makes a hugging motion as he swings his body side to side. And Ben taught him a little saying...... so Christian will point his finger out away from him and say, "Hey you, top it! Don't bodder my sishter!" It's the most adorable thing ever. And he'll even ask to pray for her so you'll see him holding his hands and closing his eyes tightly and we'll pray outloud for God to help Lauren get healthier and bigger so she can come home and then he'll say "amen".

I think it's amazing that at his young age of 2 1/2, he can grasp the concept that his baby sister is out of mommy's belly and in the hospital where the doctors are making her owie go away and that she'll be home soon. And that he has a natural protective instinct that he's eagerly waiting to exercise. I just love him to pieces and I think Lauren is lucky to have a big brother like him. Ben and I were saying how we both wished we had an older brother like Christian.


Stress to the umpteenth degree. I'm running on fumes. I have much to be thankful for but much to be stressed out about too. Can you believe that Lauren's hospital bill alone for the duration she'll be treated (about 3.5 months) will be around $1.5 MM?? It sounds like alot, but then when you think about everything and everyone that's involved - around the clock team of doctors, specialists, labs, tests, xrays, blood draws, equipment, hospitalization, nurses, drugs, treatments - I guess it makes sense. Anyways, our PPO insurance only covers 80% so we're responsible for the 20%. There's a cap though of how much we need to pay...and I'm trying to work with a Financial Counselor and Social Worker at the hospital to see if we qualify for some type of financial assistance through Medi-Cal or CA Children Services to cover at least part of that cap.


2 days before Lauren was born, I was supposed to officially start working again. My old boss wanted me to come back to work for him even though he knew I was pregnant. For those of you who don't know, (big inhale...) I was the Director of Project Management for an energy consulting firm that worked with local utilities and commercial property owners/managers on identifying ways to make their buildings more energy efficient using new technologies while getting rebate money from their local utilities to help offset the cost (out of breath). Sounds fancy, don't it? But not really. Anyways, he offered me an opportunity to make a 6-figure income even knowing I was pregnant and was willing to accommodate me and allow me to work from home most of the was a dream job come true. For 2 weeks, I worked on familiarizing myself with our products and services and even developed an in-depth procedure plan for the program I was going to manage during the first time I got admitted to the hospital.

I was planning on working up until my delivery, taking a few months off and then returning to work full time. We wanted to save for a year and buy a new home. That was our plan. It was a good plan. It was the plan I can't seem to let go because it was our ticket to a new home - with more rooms...and a yard! I soooo want a that too much to ask for? Now, that dream has been put on hold...for who knows how long. It's amazing how drastically and quickly things can change.

One minute you're planning out your dream home and the next minute, you're stressing about hospital bills as you've just finished pumping breastmilk for your 24 weeker preemie baby who's in the NICU .... and you're typing about it on your blog.


Welcome to my world.


Wednesday, November 5, 2008

One Step Forward... Two Steps Back

Around noon, I went to the hospital to meet with Ben and our pastor so he could pray for Lauren. I spoke with the nurse in the morning to check on Lauren and to ask them to make an exception to the '2 ppl at a time' visitation rule. She said that was fine and gave me an update on Lauren. Unfortunately, the CPAP machine was not working for her. Her blood gases (co2) were still high so the respiratory therapist decided that intubating (putting in a breathing tube down her throat that's connected to a ventilating machine) her again was the best option. So she's back on the machine she was on when she was first born.

Seeing her attached to that machine laying on her back - I can't even begin to explain the way I feel. I feel so very sorry to her that she has to go through all of this. All because my body failed her. My body fucking failed her. WHY? I hate myself. I hate God. I hate, hate all of this. She's in pain. She's miserable. She's been poked, prodded, and pricked every which way possible. She's endured more physical pain than I can bear to imagine. At what point, as a parent, as the one responsible for her well-being, do you draw the line and say enough is enough? At what point, do all these painful procedures become inhumane or cruel? How long do I continue to let her suffer like this?

Tuesday, November 4, 2008

Diarrhea - Mental and Otherwise...


Yesterday, November 3rd, 2008 would have marked my entrance into my 3rd trimester if I were still pregnant. *sigh*


Christian has been sick - we don't know if it's an ear infection or maybe the flu. His doctor prescribed antibiotics but warned me that if he did diarrhea, to stop giving it to him. The first day I gave him the med, he diarrhea'd. So we're just trying to ride it out. Unfortunately, I got sick too. So now, I can't even go see Lauren. I've been keeping Christian from school because of the runs and because I miss hanging out with my boy. Yesterday we went to the LA Zoo and he had a blast. Today, we just ran some errands and met daddy for lunch. He's been really whiny lately and throws a tantrum almost immediately. But, I don't even get mad or bothered by it anymore. I keep thinking, I'm just so thankful he's a healthy growing boy - that's all that matters.


Before I got pregnant with Lauren, we started doing some church hopping in hopes of finding a good church to grow with. But there was always something we didn't like about the church -whether it was a lack of connection with the pastor, or the service time, or it was too big. I've been saying how I wanted to a church nearby, that started at a time where afterwards, we could feed Christian lunch in the afternoon and have him home in time for his afternoon nap and I wanted the church to be small.

About a week ago, I had a dream about our old pastor. He was the pastor who married us. He's the closest thing we have to a pastor since we've stopped going to church. We haven't seen him since Christian's 1st year celebration. And prior to that, it had been at least 3 years we had seen him last. He's still a pastor but is no longer a practicing one at a church - he works more on the administration side for churches. Anywhoo, he popped up in my dream and I dreamt that he was a practicing pastor again and he started a small church.

The following night, while Ben and I were in the NICU with Lauren, I had mentioned to him that I had a random dream about our pastor and explained the dream. I suggested that he call him and tell him about Lauren and ask if he could come by to pray for her. The next day, Ben calls him and guess what we find out? He just started a small church (about 15 ppl) in Glendale (where we live) and service starts at 11!

You think God's trying to tell me something?


People have warned us about the roller coaster ride we were going to endure during this whole NICU experience - LOTS of UPS and DOWNS. Lauren's been doing relatively well. Things have been, to some degree, uneventful so I'm just waiting for something to happen. One person posted on a preemie message board that even though things have been going okay, she was waiting for the other shoe to drop, so to speak. I completely know what she means.

But, Lauren's been slowly progressing.

She went from a breathing tube down her throat to just a nasal cannula (those nose prong tube things that flow oxygen into your nostrils) within a week - which is supposed to be really good.

She's been increasing her milk intake (Hallelujah to the fact that her little immature body is actually digesting food - to me, that's just insane that her body is doing that at her premature age) as well as the frequency.

She was having issues with some of the milk not being digested completely (called residuals) but that's slowly starting to improve (less and less residuals) as they alternated between breastmilk and special preemie formula.

She's had several blood transfusions (all successful).

Her jaundice has finally stabilized so she's no longer under a light with a mask on to cover her little eyes.

Her left eye was still fused shut but it finally opened.

She was needing assistance with her pooping so they administered enemas and she seems to be pooping okay so far.

A part of a chamber in her lung had closed up but luckily, it opened up again on it's own the following day.

She had an infection in her lung so the doctors put her on antibiotics and it's helped.

She still gets apneas and bradycardias (aka A's and B's) which is when she stops breathing and her heart rate drops. But at her age, that's supposed to be normal. She had an episode when I had changed her diaper for the first time. Sometimes, just the position they are lying in can cause A's and B's. They're that sensitive.

She's had 2 brain scans and so far, she has no brain bleeds. Keep in mind, how fragile tiny preemie 24 weeker bodies are at this stage. Their lungs are like tissue paper, their skin is almost gelatinous because it's so thin and the blood vessels in her brain is like rice paper. Yeah, it's that fucking thin. You hold her head the wrong way or give pressure and you could probably do some serious damage. So it's not unusual for her to develop a brain bleed down the road.

She went from 625 grams to now a whopping 760 grams! We'll be jumping up and down when she hits a whole kilo. A whole kilogram - 1000 grams - 2.2 pounds! I'll pick her up and think to myself, this is what a "kilo" feels like. (excuse the warped sense of humor... i'm tired, i'm delirious, i'm sick and well, really fed up of being in this survival mode.)

But now, Ben just calls me from the NICU and tells me that they put her on a CPAP machine. It's a little mask thing they put over her nose and have continuous air pressure helping her breathe. How that's different from a nasal cannula, I don't know. All I know is that being on a CPAP machine is a step down from what she was on a day ago. The nurse said that her body wasn't getting rid of the CO2 well. I guess this is a part of the roller coaster ride.

I've been telling Ben that I'm so scared of hearing any type of bad news because so far, things have been progressing so we're on the incline part of the roller coaster - going up and up and up. But if you go up higher and higher, the drop is going to be a big, huge dip downwards. I'm scared that we're going to start the downward spiral of this whole thing.

So please, dear friends, dear random lurkers of my website and dear visitors doing searches with keywords such as preemie, NICU, preterm labor, etc., if you're reading this - PLEASE PRAY FOR LAUREN. PLEASE PLEASE PLEASE. When you wake up, Pray. Whenever you think about her during the day, PRAY. When you're eating, PRAY. When you're drinking, PRAY. When you're driving, PRAY. When you're going pee, PRAY. When you go to sleep, PRAY.

Thanks everyone.


Monday, November 3, 2008


There were several occasions where I wrote about some of our first encounters with Lauren but didn't have time to post them for everyone else to read. Here is a compilation of some of them...

Lifting Her For The First Time

I held her for the first time today (October 21, 2008 - 4 days old). Well, more like, stuck my arms in her isolette and lifted her. The nurse had to change her bedding and asked if I'd like to help. She explained how to hold her- support her head, neck and shoulders with one hand and her butt with the other hand. I was so scared and nervous to lift such a fragile little life. I struggled trying to scooch my fingers and hand under her head. As I lifted her up, she started arching her back which scared the crap out of me because she was so fragile, she looked like she could break in half at any moment. I lowered my hand that was holding her little bottom and that seemed to stop the arching and she just lay there in my hands. She was so light. I began to tear up - even as I write this - the emotions come welling up into my eyes. She was so delicate. After the nurse was finished changing out her bedding, she had me gently lay her down in her new nest. And then I finally exhaled. I think I was holding my breath the entire time ... either that or I just forgot to breathe.

First Diaper Change

October 23, 2008 - Today I changed your diaper for the first time. And it was a poopie diaper. You didnt like it very much. And I was so nervous doing it. You're so delicate and fragile - I was afraid my big hands were going to be too much for your frail little body.

Upon finishing your diaper change, you gave me quite a scare as your stats dropped and you had stopped breathing. The nurse sat you up and began stimulating your chest and your head as if to wake you up to remind you to breathe. It worked as we both saw your tiny little chest move up and down and we both sighed relief.

First Feeding

October 24, 2008
When I got to the NICU this afternoon, Lauren's doctor and nurse were excited to tell me that Lauren was going to get her first feeding today!~ I got to witness the whole thing....

I've been pumping every 2 to 3 hours with a hospital grade pump. The NICU provides you with these sterilized little bottles so that you can pump directly into the bottle and freeze them for when your baby is ready to start feeding. So, the nurse had already pulled out and defrosted one of the bottles from their freezer. The doctor ordered 2 ccs of milk every 6 hours. The nurse used a little syringe and sucked up some milk inside and then attached it to Lauren's tube and in went the milk down to her stomach via a feeding tube. I cried as this was such a significant milestone in her development. I thanked the nurse for giving her her first feeding as tears were rolling down my face.

First Holds...

October 26, 2008 - I got to hold you in my arms for the first time. It wasn't skin to skin but I held you while you were in your little "nest". For the first time, I got to see your face up close and examine every little detail. You have faint little lashes on your eyes already. You're incredibly tiny. I estimated your head to be about the size of a tennis ball, but when I held you, I realized that your head was even smaller than that. You're amazingly adorable. Thank you to our nurse who was generous enough to give us our first snuggle together. Typically, parents aren't allowed to hold their babies until they reach around 1200 grams. But you were stable enough to be out of your isolette and in my arms. I'll never forget that day...

October 29, 2008 - We got to do Kangaroo Care for the first time. It was skin-to-skin. Our nurse tonight asked if I'd like to hold you and of course I said yes. She set up a rocking chair next to your isolette and carefully gathered all the wires that you were connected to...and she took you out of your nest and gently placed you on my chest. She then placed a blanket on both of us and then brought another blanket which was warmed up to keep you extra warm. You laid there on my chest and it felt so...right. It was the closest thing I had felt to feeling pregnant with you in my womb. I recognized all the little fidgets and movements you were doing on my chest as I remembered you doing the same thing in my belly. I wished so hard for you to be back where you belong - in my womb.

I held you and rocked you and hummed to you. I was extremely anxious though and several times I tried to take deep breaths to calm my heartrate down in fear that the sound of my heartbeat was too loud for you as you laid your head against my chest. I kept watching your monitor - your heartrate, your breathing pattern, your oxygen saturation levels. The nurses had to increase your oxygen, then decrease. It was a bit difficult to get completely relaxed with all the alarms going off on other babies around us - I was afraid it was overstimulating your little ears.

Then, your daddy got to hold you. It wasn't skin to skin like mommy because daddy was wearing a thermal but he got to hold you in your blankets. He was so happy and couldn't keep his eyes off of you. He was in true awe.

You tiny little creature - you've touched us in ways we've never felt before. We love you, Lauren. Please continue to thrive and grow and become healthier with each passing day. We need you in our lives. Christian oppa can't wait to see you...he talks about you every day.