Living Large

Day 13

I finally hit the 2 pound mark! Doc says that I am doing well.  I still have occasional A's and B's (apnea and bradycardia) but that is because I am so young and my lungs and nervous system are still immature.  Even though I like my storm trooper gear, I am sick of having these tubes up my nose so in a few days I might start getting steroids to help my lungs develop faster.  My next echo to check on my PDA will not be until March 5th.

My parents came to see me with Grandma and Grandpa Thurman this morning.  They brought me some cool balloons and took lots of pictures of me.  Mom got to hold me again.  At first I was fussy because I was comfortable in my bed, but I like being close to her.

Rock On

Day 12

Today they finally took the blue light away so I can use my new guitar blanket and get some sleep.  I have been packing away the 7.5 cc feedings and they will continue to increase the amount by 1.5 cc each day.

My parents thought they were getting too good at changing my diaper so I decided to see how they would handle a little extra poop in the middle of the process.  The nurse says I poop more than any other baby she knows.  I get that from my daddy.

I have had a few Brady's today which is when I don't breathe and my heart rate drops.  I'm only 12 days old so sometimes I forget.  This really freaks out my parents, but I recover quickly when the nurses nudge me or give me more oxygen.

15 more grams and I will be a 2 pounder.  I was so excited when my parents came to visit in the evening that I couldn't hold still.  I was stretching my arms and legs and even pushing my whole body up.  The nurse said that was a good sign but that I wouldn't gain any weight if I continued to do aerobics.  I just wanted Mommy and Daddy to see how strong I am.

Kangaroo Care

Day 12

Whohooooo no bleeds on the head scan!  I won't have to have another one until I am 36 weeks old (gestational age).  My oxygen levels have been up and down today but I am getting a lot of food.  My feedings are up to 6 cc.

Mommy got to hold me for the first time outside the incubator.  They call this skin to skin contact Kangaroo Care.  I was nice and warm against her and I liked being able to hear her heart beat again.  I think she was nervous since I have so many tubes and wires.  She had gotten used to how small I looked in the incubator but when she held me she felt how tiny I really am.  I won't always be this small.  I am going to grow tall and strong like my Daddy.

First Family Photo

Head Scan

Day 10

I am 27 weeks (gestational age) today.  It was a busy morning.  They did a head scan to check my brain for bleeding.  The blood vessels in the brains of preemies are very fragile and break easily.  My parents won't hear the official report until tomorrow, but the doctor said he didn't see anything to be concerned about.  They put me back under light therapy for jaundice again and increased my feeds to 4.5 cc.

Grandma Thurman came to see me for the first time today.  I was pretty tired and having trouble keeping my oxygen level up.  I had an episode of apnea which is when I stop breathing.  The apnea sometimes causes bradycardia which is a slow heart rate.  Everyone calls these A's and B's.  The nurse had to rub my back and stimulate me to remind me to breathe.  Hearing this really made my parents worry.  To make things worse, they were not allowed to visit in the evening because two new preemies came and all the nurses were very busy.

Mom and Grandma spent the whole afternoon making my incubator blanket so I could sleep better.  Dad picked out the guitar fabric and Mom came up with the idea to line the inside with plain black to block out the light.  Grandma sewed it together with yellow ribbon.

Will do tricks for food

Day 9

The doctor said I was doing well and that I could get more food.  Now I am up to 3 cc of breast milk.  I  still get IV fluids for nutrition, but they will slowly increase the amount of breast milk by 1.5 cc each day until I get to full feeds (16 cc) and then they will stop the IV fluids.  I can't wait to get rid of some of these tubes.

I don't like to be messed with so I cry whenever the nurses change my diaper or do anything to me.  They told Mom and Dad that it is a good sign that I have the energy to fuss.  The nurses say that I am feisty, but that is just my Samoan warrior spirit.

Today was Mom's favorite day so far.  She held me in her hands and I showed her how I can suck on the pacifier.  Dad videotaped it and she has watched it a million times.  I didn't skip any feedings today and am feeling so good that I was only on 21% oxygen (room air) for most of the day.  Dad held me at night while the nurse and Mom changed my bedding.

Snug as a Bug

Day 8

I am one week old today!  The doctor had told my parents that the first week would be critical so they are super happy to see me today.  They were even happier to hear that the echocardiogram showed that the medicine was working and the PDA was smaller.  The doctors are going to wait and see if it will close the rest of the way on its own.  They also took out the umbilical catheter that was in my belly button so I can finally lay on my tummy.

For my one week birthday the nurse gave me a green pacifier.  Even though it is the smallest one they have, it is still too big for me.  She saw me chewing on my feeding tube so she put the pacifier in my mouth and I sucked on it for a few minutes.  Unfortunately my parents weren't there to see it.  Maybe I will show them tomorrow.

Mom helped change out my bedding at night.  I have had some tummy troubles with green gunk in my belly so I have skipped a bunch of meals.  I looked at Mom and Dad a lot and could follow their voices with my eyes.  They tucked me in for bed and I am so comfy in my nest.

Eyes Wide Open

Day 7

Today is my last dose of PDA medication.  My parents are very anxious to find out if it worked.  I am breathing really good today (which might be a sign that the PDA closed) and only need 24% oxygen (room air is 21%).  I finally got some more food at 9 A.M. after having to skip several meals yesterday.    Before they left I showed them how good I was feeling by opening my eyes really wide.

Criss Cross Applesauce

Day 6

The doctor gave my parents some good news this morning.  I have been tolerating my feedings and maintaining my oxygen levels, but the best thing is that he said he didn't think he heard the murmur anymore. It is too soon to tell if the medication for the PDA worked, but what a great sign if it did.

Now that I don't need light therapy and the eye mask anymore, Mom and Dad could get a better look at my face.  This was the first time since I was born that they could see my forehead, eyebrows, and eyes. They were staring at me and trying to decide who I look like.

I was having some tummy trouble in the evening and have had to skip several feedings.  Before they give me breast milk through a tube, they pump my stomach to see if the last feeding digested.  If I have too much left over (residuals) they put the same food back in, but today I have had some gunky green stuff.  When that happens they remove it and skip that feeding.  This might be happening because of the PDA medicine.  To make my parents feel better, I opened my eyes.

A letter from Mommy

Dear Santiago,

Your Dad and I have wished and dreamed of you.  You cannot imagine the joy and excitement we felt knowing you were coming into our lives.  At this very moment you amaze us with your strength, accomplishing things you are not supposed to be ready to do.

I have deep regret for not being able to protect you longer, but I will fight for you every day of your life.  I cannot wait for you to experience all the love and joy this life has in store for you.  Stay strong little one.

I love you.

Mommy

PDAs are scary

Day 5

Very scary day.  The doctor called and said that the murmur he heard is a PDA (patent ductus arteriosus).  A lot of preemies have this and if they are small sometimes they close on their own over time.  Mine is large though so they are going to start treating it right away with a medicine. something similar to Ibuprofen.  I will get a dose every 24 hours for 3 days and then they will check my heart again with an echocardiogram.  My parents are very concerned and hoping that the medicine will work so I don't have to have surgery.

My jaundice is better so they took off the last light.  They are managing my blood pressure with medicine.  I have been getting donor breast milk until today but now they have started using Mommy's.  The doctors told her that mom's of preemies have special breast milk that is especially good for little guys like me.

Hooray for poop!

Day 4

Dad changed my diaper today and I saved my first poop for him.  Everyone was very excited about it.  There's lots more excitement where that came from.  Mom picked me up when the nurse was weighing me.  She also helped decorate my crib with some new sheets and blankets that have cars all over them.  Maybe when I'm 16 my dad will give me the Bronco.  I wonder if he can fix it by then.

My parents were feeling very good by the time they left because they got to help the nurse do a lot of things with me today.  My jaundice is getting better and they took away one of the two lights.  The doctor said he thought he heard a heart murmur so a cardiologist is coming to see me tomorrow.

A separate entrance please

Because watching a family take their healthy baby home makes Mommy cry.

Bright Lights

Day 3

Today they put me under light therapy for jaundice.  Jaundice occurs when the liver is too immature to remove a waste product called bilirubin from the blood when old red blood cells break down.  The lights help the body break down and eliminate bilirubin.  They gave me these cool sunglasses to wear while I am under the lights.  I am going to pretend I am catching some rays at the beach.

The best news of the day is that my blood work was negative for any infections so I don't need to take antibiotics anymore.  An infection was the first big thing that my parents were really worried about.  The doctor is pleased that I am still off the breathing tube.  Later in the week I will have a chest x-ray to look at my lungs and a head scan to check for any brain bleeds.

Mom and Dad said that they had tons of people from the hospital stop by their room.  They were very excited when they finally got enough milk to flow into the bottle to bring to me.  Mom's milk is going to give me super powers.  I know she is very sad to be discharged from the hospital today, but they will come back to see me every afternoon and night.  I held her hand for a few minutes before they left.

Storm Trooper

Day 2

Little boys like to dress up like superheroes.  After only 24 hours, the doctor recognized that I am not just an ordinary boy, took out the breathing tube from my throat and gave me my Storm Trooper gear.  I don't really like the prongs up my nose but they give me continuous positive airway pressure (CPAP) which regulates the concentration of oxygen and pressure.  If I get tired or forget to breathe the CPAP will help me, but I am doing most of the work on my own.

I have lots of equipment: a PICC (peripherally inserted central catheter) in my arm which goes to a larger vein near my heart to deliver IV fluids and medicine, an umbilical catheter which is a thin tube in my belly button so the doctors and nurses can draw blood and give me fluids and medication without hurting me, and an incubator which is this clear plastic box that keeps me warm and protects me from germs and noise.  The blue cuff that is on my foot monitors my blood pressure, the pads on my chest go to the heart monitor, and the light wrapped around my foot measures the level of oxygen in my blood.  All of these things are hooked up to a monitor that beeps all the time and makes my parents very nervous.

Auntie Denia and Lisi came to visit me today.  Auntie Lisi drive all the way from Ohio as soon as she heard I was here, so I must be pretty special.  Mommy and Daddy came to see me lots and spent the day learning how to pump breast milk.

Birth Story

Every soul that comes into this world has a story.  This is yours...

My Aching Back
Wednesday - February 13th, 2013

What started out as a typical Wednesday began a chain of events that would change our lives forever. I went to the studio to teach my two morning classes.  We had a Dr.'s appointment for our regular 25 week check up that afternoon, so your Dad had come with me that morning.  We were really looking forward to that appointment to hear your heartbeat again.

The doctor measured my tummy.  25, right on schedule.  We listened to your heartbeat and the doctor said you sounded great.  You had been sitting very low on my right side since the night before.  I was concerned about how hard it felt, almost like you were stuck.  The doctor said that it was normal, that you probably just found a comfy spot and had your butt or shoulder nudged up against me.  He gave me instructions on how to count kicks and we left feeling relieved.

I taught my three evening classes, passing out costumes to all the dancers.  By the end of the evening I was very tired and couldn't wait to go home and lay down.  Monday and Tuesday had been long days as well.  As I was getting ready to leave I remembered that your Dad and I had come in together that morning and were sharing a car.  One thing your will learn about us Santiago, is that your parents do everything together.  I am not sure your Dad loves it as much as I do, but he plays along.  Anyway, Mary offered to take your Dad home so I didn't have to wait around for him.  I was so exhausted that I quickly accepted.

Once I got home I immediately laid down on the couch.  By the time your Dad came home and hour or so later my back was aching badly and I felt a heaviness in my abdomen.  Your dad massaged my back, I took 2 Tylenol, and I went to sleep on the couch.  I remember thinking that I probably overdid it that week, working 3 long days in a row.  We had a school vacation coming up and I thought to myself that I just had to get through the next 3 days and then I would have a long break to relax and take it easy.  That never happened.


Stay Pregnant
Thursday - February 14th, 2013

In the morning my back still hurt, but I thought I could make it through teaching the 3 classes I had that day.  I moved gently through the first class and got through it.  During the hour break before the next class the discomfort in my belly got worse.  I asked Virginia to help me with the next class and she demonstrated so I didn't have to move as much.  I was able to finish that class by myself and thought I would be able to make it through the last one.  15 minutes in I started to feel feverish and light-headed.  I called Virginia to take over for me while I went to the bathroom, and that's when I saw the color that no pregnant woman wants to see, red.

Your Dad and I immediately left for the hospital.  We started driving without a plan and after a few minutes of arguing about where we should go, we drove to Northside Cherokee.  We went to the E.R. and by then I was in a lot of pain.  They took me to the Labor & Delivery wing and took my vitals but couldn't find your heartbeat.  My lower stomach looked like I had swallowed a cantaloupe.  It was hard and raised up.  Little did I know that my uterus was contracting and the contractions were only a minute apart.

What I had thought was just aching for the past 24 hours had been contractions all along.  I was given morphine for pain, magnesium sulfate to slow the contractions, and a steroid to help your lungs mature faster.  When the contractions slowed down to 5 minutes apart they transported me in an ambulance to Northside Atlanta.

Even though it was scary, I never thought there was a danger of you coming so early.  Your Dad and I both figured that they would get the contractions to stop and I would be sent home on bed rest.  By the end of evening I felt comfortable and sent your Dad home to get a good night's rest.  Had we known what was in store for us, he never would have left.


The Broccoli Did It
Friday - February 15th, 2013

I awoke at 3:00 A.M. with painful contractions.  I was given more medication and able to rest until close to 8:00 A.M.  Your Auntie Denia came by and we sat and talked.  The contractions got closer together so they increased the dosage of magnesium sulfate.  While the lower dosages made me feel flushed and queasy, the increase made me burn up and cross-eyed.  I couldn't open both eyes or get comfortable.  Your Dad returned and the three of us tried to relax and watch T.V.

At lunchtime they brought me a tray of turkey, sweet mashed potatoes, and broccoli.  I wasn't extremely hungry but I was feeling terrible from the medicine and thought some food in my stomach would help to dilute it and alleviate some of the symptoms.  I brought a single piece of broccoli to my mouth.  I should have known by the way the smell turned my stomach, but as listening to my body is not something I am accustomed to doing, I took a bite and immediately knew it was not going to stay down for long.  Your Dad and Denia scrambled for the bed pan.

My stomach seized and I vomited violently several times.  The pressure in my stomach was too much and soon felt fluid gushing from underneath me.  It didn't feel like urine and with a swab test the doctors confirmed it, my water had broken.

A midst all the nausea, vertigo, hot flashes, and contractions I found myself being told that a delivery was on the horizon in the next day to a week.  I was foolish to think that will power alone could hold you in for another 7 days.

The rest of the day past with visits from Grandma and Grandpa Thurman and Uncle Ray.  We all sat around that small cramped room watching the contractions rise and fall on the monitor beside me.  Once everyone left I finally drifted off to sleep around 8:00 P.M.  I slept on and off throughout the night, but by 5:00 A.M. I needed more pain medicine.  That only lasted 3 hours.


Ready, Set, Breathe don't Push
Saturday - February 16, 2013

At 8:00 A.M. I confessed to the nurse I was feeling worse.  A half hour later she asked me to tell her when I felt pressure in my bottom.  By then I had already felt pressure with the last two contractions.  She told me to let her know when the pressure became constant and at that very moment it had.  They brought in the delivery doctor to check my cervix.  Barely touching me, she uttered the words that shocked us all, "we're delivering."

I was wheeled through the hallways to the operating room as sweat began to collect on my forehead.  Your Dad was stopped and told to put on scrubs over his clothes.  As I was waiting for him the pain was increasing and I felt like I needed to push.  With him back at my side, I was yelling that I needed to push but the NICU team had not all arrived yet.  Breathe, don't push I was told over and over.  My patience weaned.  'Tell them to hurry"  and "Can I push now, I need to push" I screamed.  Finally they turned me over on my back and told me to grab the backs of my legs.  4 pushes later and you were here.

I lay absolutely silent and shaking as they took you to the other side of the room.  You did not cry, but I heard someone say that they saw your try to take a breath on your own and that it was a good sign.  They allowed your Dad to go over and see you.  When he returned he had tears in his eyes.  I listened for any piece of information to let me know how you were doing.  After several minutes they brought you over to me all bundled up.  I only got to look at you for a few moments.  I tried to absorb as many details as quickly as I could: your eyelashes, eyebrows, mouth, chin, and Samoan nose.  I whispered "I love you" and they whisked you away.

They moved me up from my holding room into a Labor & Delivery room.  We waited and waited, growing more worried as each hour passed without hearing from the NICU doctor.  Finally around 1:00 P.M. he came to see us.  The gravity in his voice and lack of encouraging words scared me.  He explained that your lungs, heart, brain...everything was underdeveloped and we would have to just wait and see.  I hated the powerlessness I felt to do anything for you.

We went to visit you for the first time.  You looked so fragile with deep red skin, your chest expanding and contracting with so much effort.  The nurse said we could touch you but we were too afraid of disturbing you.  We wanted you to focus every ounce of your little body on growing and healing.

It is not what we expected; not what we planned.  But you are here and we love you so much.

Santiago Toso Sateler

2/16/13 8:55 A.M.

1 lb 14 oz, 13.5 in

Head 9 in, Chest 8 in
Born at 25 weeks 5 days