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Thursday, March 25, 2010

Technically speaking...

Okay, I am posting this MOSTLY for myself.  I went through the "NICU" book that they gave me, and they had all the "proper" terms for what all they are doing, and have done for my baby.  I wanted to "put them down on paper" so-to-speak, so I can remember it all.  I will TRY and go in alphabetical order...good luck Tamra...

Acidosis: High acidity of the blood.  Romy had this.  They first tried to give her fluid boluses (bolus: lots of fluid given in a short amount of time) but it wasn't working.   They then put her on dopamine a blood pressure medicine.  They were tentative about doing that because the side effect of dopamine is tachycardia(tachycardia: fast heart beat), which is what got her delivered early in the firstplace.  She was on this for five days.

Apnea: pauses in breathing lasting more than 15-20 seconds.  Romy has had one episode of this, which caused a brief episode of bradycardia. (bradycardia: slowing of the heart rate to less than 80 beats/minute)  This is about the time they decided intubating (intubate: placing a small tube called and ET tube through the mouth into baby's airway connecting to a ventilator) her and putting her on a ventilator was neccessary (ventilator: a maching that helps the baby breathe by giving pressure and oxygen to the lungs). 

CBC: Complete blood count/ a test that measures red and white blood cels and platelets.  She has had SO many heel sticks checking her CBC levels. (heel sticks: pricking a baby's heel with a small needle to collect drops of blood)  This is how they found her infections and put her on two different antibiotics on two different occasions.  This is also how they did dextrostix (Dextrostix (d-stick): a test requiring a drop of blood that determines the glucose level in the blood)



Containment: Helping baby to calm and feel safe by placing your hands to hold baby in a flexed position.  We learned quickly that we couldn't "stroke" our little girl.  She was too sick.  When you have a tiny, you have to put your hands in certain positions, which is kind of like swaddling her without the blankets.  Hey...I will take ANY touch I can get!!

CPAP (Continuous Positive Airway Pressure): provided by small prongs and a mask inserted into baby's nose.  These provide oxygen and pressure to help keep the air sacs open.  This can be used after the breathing tube is removed and before a baby an breath on their own.   Before Romy could be on this device, she was first on an oscillator.  (Oscillator: a type of ventilator that keeps the baby's lungs inflated all of the time by giving tiny amounds of air at very fast rates)  I hated seeing her on this machine.  It would just shake her.  She had to be on this for a couple of days before she graduated to a conventional ventilator, and then eventually to the CPAP.

Echocardiogram:  A painless test using sound waves to produce a picture of the heart.  Romy had several of theses test while trying to diagnose her.  They also did several EKG's (EKG: a record of electric current produced by the heart muscle from which certain things can be learned about the heart's structure and function) to find out why she had tachycardia .

Extubation: removal of the ET tube.  She had this done twice.  The first time she was showing false signs of recovery.  She then plumited severely for several days with her SVT, (the diagnosis that they came up with for her heart), fluid and infection in the lungs, and hypotension (extremely low blood pressure).  The second time, her scores were boarderline, but the RT (Respitory Therapist) felt she would be ready to try the CPAP.  Her blood gas levels threatened a re-intubation, but she saved herself at the last minute with a normal count!!

Nasogastric tube (NG tube):  A tube that is passed through the nose into the stomach.  Romy had this to vent air out of her stomach while she was on her ventilators and CPAP.  They would periodically pull air out of her stomach...it looked SO uncomfortable.

PICC line (percutaneously inserted centra catheter): A special longer lasting IV.  It is a soft, tiny tube that is inserted into a blood vessel.  A speciay trained group of nurses or doctors put them in.  They use x-rays to guide them and use a sterile room.

RDS (respiratory distress syndrome): This is the most common lung disease of premature infants.  It is caused by not having enough surfactant (a substance that coats the airs sacs in the lungs).  Surfactant helps keep the air sacs open.  The air sacs must be open for the baby to get oxygen in and carbon dioxide out of the blood...which is what Romy struggled with for days.  She had SEVERAL surfactant treatments because her x-rays were continually showing hazy, fluid filled lungs.

Tachypnea: breathing faster than normal.  Babies generally greathe approximately 40-60 times a minute.  When Romy Lin was first put on her canula (small tubes delivering a small dose of oxygen) she would breath up to 90 times a minute.  It was hard for her to figure this whole "breathing business" out!!

UAC (umbilical artery catheter): A special kind of IV placed in one of the vessels of the umilical cord.  Fluids can be given, and blood can be drawn for lab testing.  The doctors put one of these in Romy, and then ended up taking it out when they thought she was doing fairly well after that first night.  I wish they could have kept it to save her poor heels that now look like she was stabbed repeatedly...oh wait...SHE WAS...poor baby...!  It would have also saved her from having NUMEROUS IV's blow.  It seems like everytime I go see her, her IV is in a different spot...! Not to mention she has that PICC line as well...

I know this couldn't have been the MOST EXCITING POST EVER...but I don't want to forget all these technical things she went through.  So, I undersand if you didn't make it this far through the post...and if I get super low comment feedback, but hey...this is my journal...take it or leave it.

Wednesday, March 24, 2010

Things can change in a moment...

I know it's taken six days to get this out...but I am sure you will be understanding...right??

It was last Thursday, the 18th of March.  I had my 36 week appt.  I was feeling so uncomfortable...just swollen, and just felt so OFF!!  Of course, I am pregnant, so what could I expect?  Anyway, the doctor asked me how I was feeling, and out of nowhere, I start crying and tell her how painful the last week has been.  She reassured me that I only had a few short weeks left, and that I wouldn't be pregnant "forever", and then thought that she should check me for dialation to see what kind of progress we had made. 

skip forward about 10 minutes...I HAD made progress.  She could feel the baby's head, and I was more dialated than the week before.  SIGH...maybe the end WAS in sight.  She then got the doppler to measure the baby's heartbeat.  As she put it on my stomach, I wasn't sure at first what we were hearing.  It was SO FAST.  That couldn't be the baby's heartbeat...could it??  I looked up at the doctor, and saw the concerned look on her face.  She just kept listening.

"I don't like that...I don't like that at all...I am gonna send you over to the hospital to have you monitored."

I then asked her if I should be concerned, and she said it was pretty concerning...and I asked..."concerning like I should call my husband concerned?"

She then said that I would probably want to call him, but that she didn't think that I would be delivered today.  She wanted me to be monitored, and then possibly get medication to the baby to slow her heart rate down.

I texted Brian who was in school and said..."Going to the hospital!!! Call me!!"

I then took the LONGEST ROUTE imaginabe to the hospital, got to L & D, and checked in.  Before I knew it there was a high risk OB doctor and a cardiologist discussing a c-section.  The baby's heart rate was reaching the 280's.  On the ultrasound that they brought into the room, you could see that her heart wasn't really beating, it was more like "quivering."  They decided that at 36 weeks along, the best and safest route for her would be to deliver her so that they could treat her heart directly, instead of trying to give me medicine, and then have it go to the placenta, and then finally to the baby, which could take a whole day. 

We didn't have a day.

Once the decision was made, I was rushed back to the OR.  Brian LUCKILY got my text, and made it to the hospital in time to be briefed and get scrubs to go back for the delivery.

My doctor's appt was at 2:40, and Romy Lin was born by 4:20...!!  She was 5lbs 14 oz, and 18inches long.

It was all so surreal.  I was scared for sure...but I think my biggest feeling was numbness.  I was in total shock!!  So many questions going through my mind...and so many fears. 

They took her to the NICU and Brian went with her.  He came back with a report that they had to treat her twice for her rapid heart rate, but that they were able to stabalize it.  She was in need of oxygen though, so they kept her in NICU to get the extra help.  I got to go see her once I was stable.  They wheeled me in, and she was in a bed that had a dome over her face that was just giving her some extra oxygen.  I layed there and held her hand...at which point her saturation levels dropped to 38%.  They immediately wheeled me out so that they could stabalize her once again.  They ended up intibating her for the night. 

(in the dome)

(crashing)

The next day she was doing much better, so they took her off the ventilator.  I got to go down and see her in a wheelchair, and they even let me hold her.  It wasn't 5 minutes, and she was crashing again!!  This time it was her heart rate soaring into the 250's.  It was so scary!!  We sat back as doctors rushed around getting her the meds she needed.  When they give her the heart medication, Adenosine, it is almost as if they are using paddles.  It stops her heart temporarily, her whole little body shudders, and then it resumes beating.  It would resume at the proper rate...and then go balistic again.  They did this three times before I couldn't stand it and asked to be taken out.  I requested that the NICU call me when she was stabalized again.  Luckily I didn't have to wait TOO long.

By Saturday morning, her lungs were beginning to fail her.  One of them collapsed, and both of them were full of fluid.  She was completely intibated again.  This time, she was on and oscillator, a machine that holds her lungs open so that she doesn't have to breathe.   It completely shakes her whole little body.  She also started antibiotics, and surfactant treatments for her lungs.  This little girl is so sick!!  It was excruciatingly painful to see her for the first time.  How could I have complained about being so uncomfortable while pregnant, when I had to see needles and tubes sticking out from every limb of my daughter.  I would have gladly taken 4 more weeks of pain, than to have seen her for one minute like this...



Saturday night she began having problems keeping her blood pressures up.  They tried different ways of getting it up that were less invasive, but finally had to give her dopamine.  The problem with this drug is that the side effect is that it can speed up the heart rate...which we have finally gotten under control.  Luckily the meds didn't affect her, and her blood pressures were stable once again.

Romy's has a heart condition called SVT.  They don't know why she got it, but the good news is that her heart has no abnormalities.  For some reason it just triggers wrong.  The medicine she has been put on has been working great, and the cardiologists say that she will be on it for a year, maybe two.  We are just thankful that it is something that can be controlled, and that there is a high possibility that she will just grow out of it.  If not there is surgery to fix the condition.

Each day now is a waiting game.  She is healing, and we are waiting for her to heal....we are looking forward to seeing her little eyes open for the first time...to hear her little cry...to hold her...and of course...to take her home so that we can be a family. 

It is day 6, and I haven't seen any of my other kiddos.  It is rough, but I know I need to be here for little Romy now, and that my kids are strong and know that I love them. 

Thanks to everyone who has been praying for little Romy Lin.  She is such a trooper, and I know she will get through this...but it is through everyones prayers and hope that she is!!

Tuesday, March 16, 2010

Heads Up...

I know I am a week (or two) behind...but thought I would post none the less.  Here is the BELLY at 34 weeks!!  As an update...She has finally turned south!!  YAY!!!  For ten weeks...she was flip-flopping from one transverse position to the opposite...head on the left...head on the right...head on the left....welp folks, her head has finally landed....lets hope she stays that way!!  It has been fun getting so many ultrasounds though!!


Friday, March 12, 2010

What's White, Greasy, and Spread all over...??

DESITIN...That's what...

Leave it up to Blazer...just when you think he is playing contently, you realize that he may be, but not the way ya want him to be.  For some reason, these messes always seem harder to clean up when you are 8 months pregnant too...go figure. 

Here's to you Blazer, and all your craziness....we love you kid...you stinker!!!







Is it just me or does that first picture resemble "Wilson" from that movie "Cast Away"....hmmmm

Wednesday, March 10, 2010

If you give a Moose a Muffin...

Have you ever read the children’s book "If you Give a Moose a Muffin" or "If you Give a Mouse a Cookie"...?? Well, short story shorter, if you give a moose a muffin, he will want some Jam to go with it...he ends up eating all the muffins, and wants to go to the store to get more muffin mix, but somehow gets side-tracked and does a puppet show, and a whole lot of other silly things...


You get the idea...


This is about how my morning started off. I was reading a blog and saw this cute idea I wanted to make...


before I pulled out my sewing machine, I decided I needed to wash my kitchen table off so I didn't get any of my "crafting" stuff all cruddy. While I was wiping the table, I noticed "crunchiness" on the floor, and wanted to vacuum, but the I realized my vacuum was upstairs. Since the vacuum was already upstairs, I decided to vacuum the up there, and then work my way to the kitchen. Ambitious...?? YES...35 weeks pregnant...vacuuming anything these days seems ambitious...

Anyhow, I begin vacuuming the upstairs. As I get to my room, I realize there is a bunch of laundry baskets that need to be moved. Moving the laundry reminds me that Brian and I have been talking about re-arranging our bedroom to make it more accessible for a basinet and our new baby...who will be here before we know it. I decide to move the room around. As I am moving the room around, I realize that not only can I NOT move my bed...I probably shouldn't. So I call the neighbor over to help me. He was super nice, and came and helped me!! SWEET!! I give him some cake, a doughnut, and some milk, and then go up and finish vacuuming my room at which point Brian comes home for a short break...


He sees the room, and is not sure about where the bed has been placed. He comes up with a better solution, and I talk him into completely re-arranging the furniture all over again while he is home on his super short break. He was THRILLED...let me tell ya...I re-vacuum again since the furniture is ALL in a new and different spot, and put all the laundry in a better spot...

Doing all this reminds me that I am 35 weeks pregnant, and my legs are REALLY swollen, and now I am having darn contractions...well, I always have them, but they are seemingly more frequent....so I decide to take a break from my projects and sit down and write about my morning...and how side-tracked I got, because it reminded me of a couple of my favorite childhood books...

As I sit down to blog, I notice that I have left up the instructions to that super cute idea I wanted to try....I am now wondering if I will be able to get to it today...I still have to vacuum downstairs...!!!

Two-Two....

(I call this...The many faces of Blazer...)

You guessed it...little Blazer man turned TWO!!!  Holy cow...!!!  I am STILL flabbergasted at how with each child the time goes faster and faster...it's like I am spiraling down a tunnel of inevitability...!!  I am going to wake up tomorrow to teenagers...the next day to grandkids....gasp....sigh...


JUST BREATHE...


So Blazer's Birthday. 


I wanted to get "on top of things" and baked his cake in the morning.  I was feeling so...ambitious!!  As I set them out to cool, I decided to go up and finish getting ready...during this 10 minutes...Blazer did this...


Of course you did!!




Well, I decided to scrap the "Mickey Mouse" cake idea since I had a million things to do, and wasn't in the mood to bake another set of cakes....so he got this:



and this:




FABULOUS???  YES, I KNOW!!!  Hey, he didn't mind...SEE???


MMMMMMM....Still tastes good...plus, he got his own cake...
(the kids thought the second one looked gross...WHAT???)


We didn't go all out, but we did take all the kids to Primos where they get to eat all the pizza they wanted, and mom didn't have to cook.  They probably thought we were spoiling them...we won't tell them that I loved the idea too...!!


Sunday, we did his actual "Birthday Party" and invited the family over.  Here was the "REAL" cake I made while little Blazer the destructo was napping.



He was SUPER excited to see his favorite movie star in a cake...in fact, the first cake he got (you know, the FABULOUS one) he knew exactly what to do with the candles.  This one, he just kept looking at the cake, and eventually stuck his hand in and grabbed some frosting to taste....after much coaxing, he blew out his candles....well, I am still not entirely sure it was him....coulda been Papa....we'll never know...



But he had a fabulous time, and ended up with a few great gifts as well...

Happy Birthday Blazer...Lets hope you can make it safely to your 3rd one!!!!  We all love you!!!!