Wednesday, January 28, 2009

hi... bye

hi...

just coming up for air but no time for a real post. soon though. lauren is home and she's kicking my ass. i don't sleep because she's on a strict 3 hour schedule. so if i'm not feeding her, i'm pumping and washing and sterilizing and changing diapers and doing laundry. i love it. well, i don't loooove it, but it's nice to have some normal chaos in the home rather than NICU chaos.

we are a hectic household with a sick toddler, a burnt out dad, a delirious mom and a teeny tiny little newborn (even though she's over 3 months old!). but we are family. maybe a disfunctional one at the moment because we're trying to recreate a sterile OR in the home and tensions are high but we are still a family.

bye...

Tuesday, January 13, 2009

Pre-Discharge

Lauren got approved for Medi-Cal and CCS. I guess she qualifies because she was born so young and so small so we don't have to worry about her hospital bills anymore! YAYY~! Sadly, I did not get approved so we're still responsible for paying for my hospitalization, delivery and specialists who came to treat me. boo. Oh well... what are you gonna do?

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We've officially started the pre-discharge process so Lauren will likely be home next week. We're so very excited and also a little nervous about it. Remember when I told you that she was off the nasal cannula? Well, she was doing well for a couple of days but then during her feeding times, she'd have some really bad spells of O2 desaturations (not enough oxygen in her blood - when it goes below a certain number, she loses her healthy pink-y color and turns a little purple/blue). She desats because she's getting too tired to eat and so she has an apnea (stops breathing) and then bradycardia (heart rate drops).

So, she will be coming home with an oxygen tank which will be used just for feeding times. She'll have to wear a nasal cannula during feeds for a month or so until her lungs get stronger and she's better able to coordinate the whole sucking, swallowing and breathing thing. *sigh*

She also gets a little cocktail of medications that I'll have to make for her everyday. It's a combination of sodium chloride, potassium, a diuretic, vitamins w/ iron and a soybean oil extract for added calories.

I'll also need to fortify my breastmilk with a little formula to make her meals a little higher in calorie because she needs to gain weight more quickly.

I'll also need to take Lauren to see a pulmonary specialist at Children's Hospital regularly to track the progress of her lungs but our social worker told us it takes 3 months to get an appointment (good gawd!).

We'll also have to go to frequent eye exams (either weekly or bi-weekly) until her ROP (hopefully) resolves on its own.

That was about all the information I could handle today so they said they'd go into more detail about each thing later this week.

I'll keep y'all posted as I get more information. Please keep praying for Lauren...

Wednesday, January 7, 2009

Even More Good News!~

It just keeps on getting better.

Breastfeeding went really well. She actually latched on and fed for a little while. I still had to supplement with a bottle afterwards though. But she was so tired from breastfeeding that she couldn't stay awake long enough to suck on the bottle. Even when she was trying to suck, she couldn't get the coordination right - she was that tired. But she did a really good job. So, from now on, I'll be breastfeeding her at least once a day to get some practice.

Ben just got home a little while ago from the hospital and guess what? The nasal cannula came off!! I can't believe it already happened. I can't wait to see her tomorrow!

Please continue to pray for her. She still has her eye issues that haven't completely resolved yet. And also her lungs. Although she's off the oxygen and although she wasn't officially diagnosed with BPD, she is considered to have respiratory distress syndrome and/or chronic lung disease. As she gets older, in the next few years, and she doesn't catch any nasty colds, her lungs will mature and they will be healthier.

Omg, I can't believe our little munchkin is going to come home soon. I have NOTHING prepared yet. Yikes!

Good News... and Good News

So. You want the good news? Or do you want the good news? Which one? Okay, we'll start with the good news.

Lauren had her eye exam today. It's such an awful thing she has to go through...so I guess there's some bad news to this post. The eye doctor uses this metal wire contraption that basically forces her eyes open and then uses this metal earpick looking thing to dig around the side flaps and flashes this bright light in her eyes while he uses a magnifying glass/scope looking thing to examine her retina. She was wailing and I couldn't do anything but watch. A part of me wanted to kick the doctor's ass for causing her pain but I just kept saying to myself that it's something they have to do to make sure she's okay.

The doctor said her right eye still looks about the same as last week so it's still Stage 2. But her left eye is now Stage 1!!! Yayyyy!~ I'm feeling hopeful... The whole time he was there, I was praying under my breath to just not let it get any worse so I was really happy to hear one of her eyes has improved.

My first breastfeeding session is tomorrow! The lactation consultant warned me to not expect much of anything during this first session. She said it was more like a "meet and greet" so Lauren can get acquainted with my boobs...lol. I have a good feeling she may latch on though so we'll see how it goes. I'm so excited!

I met with one of Lauren's doctors today and she's increasing Lauren's milk intake by another cc so she'll be at 38 cc per feeding, every 3 hours. =)

She's still on 21% oxygen which is "room air" and they lowered the flow to .25 liters. This is a super low setting and the doctor said that basically they left the nasal cannula in her nose so that they could increase her oxygen % if she needed it during feeding times. But Lauren hasn't had her oxygen increased at all for the past 2 or 3 days. It's been at 21% for at least 3 days. So, the doctor said that she will probably get off the nasal cannula in a couple of days! One less wire on her to worry about!

BPD is a lung disease that's diagnosed when a baby needs supplemental oxygen during his/her feedings at 36 weeks gestation. Lauren was 36 weeks on Monday and since she hasn't needed an increase in her O2, the doctor said she probably doesn't have BPD. Yipee!~

Okay, and last but not least... I asked the doctor when Lauren would be discharged. I joked and asked if I could just stick her in my purse and take her home right then and there. The doctor said that if all goes smoothly, Lauren will be coming home anywhere from 10 to 21 days from now!

I'm so excited and totally stressed at the same time. There's so much I need to organize, buy, plan, clean, etc. and I don't know where I'm going to find the time to do all this in between being at the hospital (even more now that I'm going to start breastfeeding) and taking care of the rest of the family.

I've been taking Christian to school in the mornings and picking him up. But when Lauren comes home, I can't take him. Walking into a daycare with Lauren is NOT an option because of all the germs. We've asked Ben's mom to take on this duty but she's out of town for like 3 weeks here and there for the next 2 months. I'm not sure what we're going to do...I guess I have to really figure things out now.

I can't believe our little munchkin is finally going to be home with us. I guess there's a good chance we will be celebrating her 100th day at home.

Thanks for all your prayers and support, everyone. Your prayers are working - God is listening. Please, please, continue to pray for us. Our journey in the NICU may be ending soon but bringing her home will be another journey in and of itself.

Sunday, January 4, 2009

Prayer Request

I just finished cleaning up my home office area and opening up a PILE of bills and trying to figure out how to pay what and actually found myself having to prioritize which bills will have to wait until later and which ones need to get paid immediately to avoid late charges. I already called one credit card to ask for an extension - they said to go ahead and make the payment and when I get assessed late charges to call back and try to dispute it then but that they couldn't guarantee anything. Ugh.

Hospital bills are beginning to pile up. Each envelope I open is at least 3+ pages long with a slew of charges. Everytime a neonatologist even breathes on Lauren, they charge $2154. Why didn't they just round it up to $2155? Why the 4? Did they think it'd look like a discount compared to $2155? I was sitting there racking my brain and trying to figure out where to cut costs. I guess we're just going to have to tighten our belts this year and just try to survive.

I applied for Medi-Cal and if that doesn't go through, there's one other State program that I will try to apply for called CCS. The reason why I'm applying for Medi-Cal is that if we do get approved, my hospitalization and delivery may also be covered. CCS is only for Lauren as it only covers children. The first time I was hospitalized was over $23,000 alone. When I saw that bill, I had to pick my jaw up off the floor. I would maybe understand if that was for the week's duration of my hospitalization but good lord, for 2.5 days?? (Remember, I went into the hospital on a Friday morning and got released Sunday afternoon). Can't wait to see what my 2nd hospitalization will amount to.

So, my prayer request is this: Please pray that we get approved for Medi-Cal. My social worker is trying to do everything she can to get us approved and we've submitted everything we needed to so now it's just a matter of the decision-makers to review everything and give us an answer. Realistically though, since we own property and other things, they say our chances are very slim. *sigh* There's something very wrong with our system, I think. The middle class kind of gets screwed at times like this. You either have to be dirt poor to get help paying for your ridiculous hospital bills or you have to be butt rich to be able to afford paying for these bills out of your own pocket. What happens to people like us who's savings looks like what you would find in the cushions of one's couch in comparison to what they owe in hospital bills?

Anyways, enough rambling. I don't know what's going to happen with all these hospital bills but I need to believe that God will somehow provide. I'm hoping and praying it's in the form of Medi-Cal. Please pray that we get approved.

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Update on Lauren: (DAY 80 in the NICU)

She's doing very well. There are no changes with her eyes yet. That's a good thing. As long as it doesn't get worse and stays the same, I'm okay for now. She gets eye exams every Tuesday so I'll update if anything changes. She is slowly but surely improving on her oxygen settings. She is now down to 21% oxygen which is "room air" meaning she's breathing the same amount of oxygen as you and I. Her nasal cannula pressure was at 1 liter for the longest time and then about a week ago, it was lowered to .75. The nurse today said that they were going to decrease it again so hopefully when Ben gets home to give me an update he'll tell me that they decreased it to .50. The goal is for it to go down to .25 and then to zero. Once it goes down to zero, she'll be off the nasal cannula.

Since Lauren was about a week old, she's been getting breastmilk through a tube that goes directly to her stomach. Up until a couple of weeks ago, the tube went through her mouth called OG or Oral Gavage. Then they changed it to go through her nose called NG or Nasal Gavage. They did this so they could start trying to bottle feed her. She's been doing well. She gets fed every 3 hours which equals to 8 times a day. So they started her on 1 bottle a day and 7 gavage feedings. Then, it increased to 2 bottles a day and 6 gavage feedings. Then to 3. And now, they are doing 2 consecutive bottle feeds and the 3rd one via gavage. If she does well, they'll continue to increase her bottle feeds and eventually she'll be taking all of her 8 feeds via bottle. Once I get the okay from her doctors, I'm going to try and work with a lactation consultant to begin breastfeeding. For preemies, especially micro-preemies, they have to learn how to suck, swallow and breathe at the same time when they're trying to feed. It's not like full-term babies where they just latch on and are able to control their breathing and sucking and swallowing. For babies like Lauren, I read it's like trying to climb a flight of stairs while eating a hot dog.

Ben just called and told me he tried to bottle feed her tonight. This was her 2nd in a row and unfortunately she was too exhausted to finish the whole bottle so the rest had to be fed to her via NG. But they did decrease her to .5 liters on her oxygen settings. (yay~!)

She's also out of her isolette and in a bassinett. You know, the kinds that full-term babies are pushed around in at the hospitals. But now that her body is working to regulate her own body temperature and she's also getting a work out trying to bottle feed, she's not gaining weight as fast as she was. But she's still a whopping 4lbs 13 ozs!! Almost 5 pounds, babyyyyy!!~ I'm hoping she reaches 5 pounds by Thursday.

My cutie beauty is getting bigger every day and I'm so glad. One of the nurses told us she was the best dressed baby in the NICU (thanks Jen, Jess & Cindy for the preemie clothes!~)

Even in the midst of all these hospital bills that surround me, I'm happy because she's alive and she's improving. There's hope that she'll be coming home soon and I can't wait for that to happen. I'd loooove to be able to celebrate her 100th day at home but there's a good chance that we'll be celebrating it at the hospital. I'm planning on getting 100 mini cupcakes for the NICU staff and having a little cupcake party. Never did the korean term "baek il" (100 day birthday) have so much significance and meaning as it does now for Lauren. She's come such a long way. I can't wait for everyone to meet her. She's truly a miracle to have survived being born so freaking early...


VOTED "NICU'S BEST DRESSED"
Lauren Faith Ahn, Class of '09



"Hi everyone!~ This is me after a bath. Thanks for praying for me . Please continue to pray for me so that I can get healthier and go home soon. This is one expensive hotel I'm at! See you all soon!~"