Prematurity Awareness Month

As many of you know, Prematurity and Prematurity Awareness are two things I'm very passionate about. When anyone asks to hear Maryam or Jax's birth stories, I'm more than happy to share my experience. Those experiences are part of who I am today. Without having gone through all I've been through as a mother, I wouldn't be half the woman I am today. I use to wonder, "Why God? Why me? Why this baby?" Now I say, "Thank God. Thank you for giving me these babies." I wouldn't have it any other way.
If I could take away all of their pain, I would. If I could take back every needle prick, tube insertion and scar, I would. But since I can't, I chose to love every single scar those needle pricks and tubes made. I make beautiful scrapbook pages of their NICU stay. I make the most out of every situation. I learn from everything they've gone through. I have done and continue to do what any mother would do, love. I'm GRATEFUL God made me a preemie mom, I wouldn't have it any other way.

How God Chooses Preemie Moms
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

I'm aware that I've posted this poem several times before, but I love it.

World Prematurity Day Breakfast

Brett and I took our preemies out for breakfast to celebrate the day. We had Starbucks. It was fun! A Marine thought Jax was 4 years old! That was a great compliment for me to hear. After years of people guessing Maryam's age a few years younger than she actually is, it was a nice change of pace. :-)

Micro Preemie

I've done everything I was ever told to do when it comes to keeping my kids safe. I sequestered Maryam for every winter, except this year. I did let her participate in more things last winter, than the winter before, but its been a slow process. Her first few years I didn't let anyone see her. I had to protect her from everything. Practically anything could kill her. The common cold wasn't just a cold for Maryam. For Maryam, catching a cold lead to more oxygen, more medications, most often bronchitis, bronchialitis, RSV, pneumonia and/or hospitalization. Winters have been rough for her. It isn't uncommon to hear me say, "I hate winter" or "I wish we could skip November through April".
For Micro preemies there are things in life that are just going to be more difficult for them than other children. I've known this from the beginning. We were taught early on what to look for and how to help prevent anything else from coming up. Things we learned to look for, or have already experienced are learning problems, hearing and vision problems, respiratory problems, feeding and digestive problems and Cerebral Palsy. Thankfully we managed to dodge a CP diagnosis, we had to fight until she was 3 years old, but she finally "grew out of the signs". You can read some of my CP rants here.
Hearing and vision problems are kind of interesting for us when it comes to Maryam. Brett has HORRIBLE eye sight. Terrible. We've been told that vision is hereditary. So, yes Maryam had ROP, yes she had surgery to repair the ROP, but she has no major side affects from the ROP and no longer has any symptoms of the ROP. She does have vision loss, but that could be hereditary. She doesn't have peripheral vision, but that's because of the ROP laser surgery. As for her hearing, she has had some hearing loss in her past. All of that has been linked to her multiple ear infections and is expected to be temporary. I'm inclined to believe that since her most recent hearing tests were normal. In case you don't know what ROP is, you can read about it here.
Feeding and digestive problems. If you've read my blog before, you know how important feeding is to me. You know how I struggled with feeding Maryam for years. You know that 4 weeks at the inpatient feeding program at CHOC changed our lives. All this goes without saying. Feeding is my passion. Every time Maryam takes a bite, chews it up, and swallows, a little miracle takes place. The extent of Maryam's oral aversion is not common. Its very rare that a baby or child just cannot eat. But Maryam is living proof that it does happen, but more importantly, she is living proof that it can and will get better.
Moving on to learning problems. I am happy to report that Maryam hasn't shown any learning problems. She has a TERRIBLE memory, but that could be inherited from me. We were told to put her in preschool as soon as it was medically safe to do so. Her pulminologist put her on a prophylactic dose of antibiotics to help keep her safe from the feared pneumonia. So far, so good. Research shows that early intervention can help prevent learning problems. Maryam started getting early intervention at home when she was almost a year old. Once she turned 3, the great state of California deemed it unnecessary anymore. So, once she was old enough for preschool and healthy enough, we enrolled her. Her teachers all say that she's very bright! Actually, "She's very bright, and very matter-of-fact about it." were their exact words.
So, that's a little lesson on the affects of being born as a micro preemie. Tomorrow I'll go over a new study that shows, being born as a micro preemie has the potential to affect her for the rest of her life. We will be in Orange County tomorrow for a reunion at CHOC feeding clinic. It should be fun to see all of Maryam's feeding team again! Weather permitting, we'll be hitting up Disneyland afterwards.

Holding a Preemie

Holding your baby is one of the most precious and amazing experiences a mother can have. Holding a preemie in the NICU is something entirely different. Its still very precious and amazing, but on top of those feelings you also experience stress, anxiety and fear. The first time I held Maryam she was just over 7 weeks old and still on total life support. The nurses had to tape her ventilator tubes to my hospital gown so that Maryam would remain stable enough to hold. I was only able to hold her for a few minutes before the stimulation was just too much for her.
I wanted to look only at her. I wanted to remember every little wrinkle of her face. I couldn't believe I was finally holding her! But my eyes kept wandering towards the monitor. The alarms were buzzing around me. The nurses and doctors and Brett were all so excited to see that the baby was no longer in the box! And I know they had everything under control. They were there watching in amazement as a baby who was so close to death so many times, was finally out of her box and in her mother's arms. My eyes kept wandering back to the monitors. It was difficult to train my eyes to watch her, listen to her, not to watch the numbers on the screen or hear the alarms buzzing in the air.
Here is video of the first time I held Maryam. The moment in time is one of my favorites. Enjoy.

For my daughter

On April 30, 2008 we celebrated Maryam's one year anniversary of being a NICU graduate. As time passes, I don't find celebrating that day as important as it once was to me. That date isn't any less important, honestly I feel its equally important to her birthday. I have worked hard to make her birthday a happy occasion. For the first few yearsof Maryam's life her birthday was a sad day for me. (Birth Story Part 1, Birth Story Part 2, Birth Story Part 3) The day she was born was the most traumatic day of my life, so I had trouble finding the good in it. As time passes her birthday is easier to celebrate and her NICU graduation date has become easier to forget!


On the anniversary of her graduation I wrote my daughter a poem. Here it is...

One year ago we brought you home
So afraid, so much unknown
A list of meds 10 items long
Wondering what to do if something went wrong
You had been in that home since December
You were so weak and small, we don’t want to remember
Celebrating each new day
We wanted you home with us to stay
When that day came, with it came fear
Wondering what would come in the following year
You had already been through more than your share
We didn’t know how much more you could bear
Two surgeries under your belt
We wondered how much pain you felt
You had started to eat and gained some weight
You were growing at a steady rate
Your due date passed like any other day
You were still on steroids; we knew there was no way
You weren’t ready and neither were we
It was still going to be a while, we’d have to wait and see
Five months passed by so very slow
When finally the day came when it was time to go
The doctors and nurses were happy to see
That Mommy, Daddy and Baby finally made three

World Prematurity Awareness Month

As many of you know, Prematurity and Prematurity Awareness are two things I'm very passionate about. When anyone asks to hear Maryam or Jax's birth stories, I'm more than happy to share my experience. Those experiences are part of who I am today. Without having gone through all I've been through as a mother, I wouldn't be half the woman I am today. I use to wonder, "Why God? Why me? Why this baby?" Now I say, "Thank God. Thank you for giving me these babies." I wouldn't have it any other way.
If I could take away all of their pain, I would. If I could take back every needle prick, tube insertion and scar, I would. But since I can't, I chose to love every single scar those needle pricks and tubes made. I make beautiful scrapbook pages of their NICU stay. I make the most out of every situation. I learn from everything they've gone through. I have done and continue to do what any mother would do, love. I'm GRATEFUL God made me a preemie mom, I wouldn't have it any other way.

How God Chooses Preemie Moms
by Anonymous

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

World Prematurity Awareness Day

Above is Jax on the day he was born. Pink as can be and without any oxygen. Perfect.
The picture above is to show you some perspective on just how small Maryam was. She was roughly the same size as Brett's hand.

Maryam on the day she was born. Her skin was pretty much transparent. The diaper that looks so giant on her is actually the size of a maxi pad.
Jax holding Brett's wedding ring. He was small.

Today is World Prematurity Awareness Day. It is a day that I hold very near and dear to my heart. Being the mother of a preemie puts me in a different circle from other mothers. It seems like other mothers don't truly understand what having a preemie really means. I can't tell you how many times I've heard a pregnant mother say, "I just wish this baby would be born already!" When I ask how far along she is and she replies with something like, "7 or 8 months" I get so bent. I want to scream at her and tell her what could happen to her baby if she had it "already."
Most women are pregnant for 40 weeks or 9-10 months. (I know that 40 months seems like 10 months, but somehow its not always.) 7 months is 28 weeks, 8 months is 32 weeks. Maryam was born at 25 weeks or just over 6 months. Jax was born at 33 weeks, or just over 8 months. Only the mother of a preemie would describe a pregnancy in weeks instead of months or trimesters. With Maryam, I didn't even get to my 3rd trimester!
How being born premature has affected Maryam:
Born at 25w 2d
1lb 10ozs, 750 grams
13" long
On a ventilator for 8 weeks, high frequency and traditional
CPAP for 4 weeks
High flow oxygen for 3 weeks
Low flow oxygen until she was 21 months old
1st surgery, heart surgery at 3 weeks old, PDA ligation (which caused vocal cord paralysis)
2nd surgery, laser eye surgery at 8 weeks old to repair Retinopathy of Prematurity (ROP brought on by the high frequency ventilator)
Several blood transfusions.
Hundreds of chest x-rays. (Literally hundreds. I stopped counting at 157)
Dozens of brain ultrasounds.
Respiratory Distress Syndrome diagnosis changed to Chronic Lung Disease/Bronchopulmonary Dysplasia diagnosis (brought on by the high frequency ventilator)
Severe Gastro Esophagial Reflux Disease GERD, given several meds to try to get her to stop vomiting. Vomiting caused micro aspirations which prevented her lungs from developing.
3rd surgery was a fundoplication and gastrostemy tube (G-tube) placement. This changed Maryam's anatomy so that she was no longer able to vomit and her stomach was permanently attached to her abdominal wall.
She eventually stopped taking all bottles and was 100% tube fed before she was 9 months old.
Starting when Maryam was a year old she was in physical therapy and occupational therapy twice a week. She also had once a week weight checks until she was 2 years old.
Maryam has had about 9 pneumonias.
She has had RSV once, however we didn't tell anyone because we were afraid everyone would freak out. She had been getting Synigis shots all winter, she got them for 3 winters. We were shocked she had RSV, but happy that her pulmonary doc felt we could treat her at home.
She was hospitalized once for pneumonia and flu B.
Maryam is small, started out small, so I guess it makes sense. She weighs 32 lbs and is 41" tall. She wears glasses. She uses an inhaler a few times a day. She is currently on 5 medications, 4 for her lungs (BPD and Asthma) and 1 as an appetite stimulant.

Affects of Prematurity on Jax:
Born at 33w
Weighed 4lbs 4ozs
19" long
Spent 13 days in the NICU
No oxygen support
NG tube for a few days
During his second winter he had RSV and bronchialitis several times.
Suspected asthma.

As you can see, the differences between the two are staggering. Micro preemie versus regular preemie, I've lived both worlds. The doctors told me that every minute, hour and day that the baby can stay in the womb helps. There is an 8 week difference between my two preemies. Those 8 weeks made a world of difference.

If you'd like to read my World Prematurity Awareness Day blog entry from last year, you can find it here.

A NICU Journey Part 2

Holidays in the NICU. During the 5 months Maryam was there we spent Christmas, New Years, Valentine's Day, Saint Patrick Day and Easter all bed side in the NICU. The below pictures are from Christmas Eve and Christmas. Our families tried to make Christmas nice for us, but honestly, it was difficult to be cheery when you have a baby on full life support.

December is pretty much a blur to me. What little I remember basically includes sitting at Maryam's bed side for hours on end, day and night, crying, lots of email, lots of phone calls, and very little sleep. According to my notes, the docs started steroid treatment on her on December 23. They started feeding her December 24, 1ml of breast milk over 2 hours, then off for 2 hours. On December 25 they increased her feed to 2mls over 2 hours, then off. They start off the feeding process incredibly slow. They do this to make sure the gut is moving. If food gets in to the intestines and then doesn't get pushed through it can rot out your gut. This is uncommon, but common enough in preemies to move very slowly.
New Year Day came and went. Maryam started to get new visitors. I used to sing that Natalie Merchant song, "Wonder" under my breath or even in my head. It amused me, for some reason.
Read the lyrics....
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

Anyway, according to my notes Maryam got special visitors on January 2, 2007. Brett's Aunt Pami and cousin Marcy came to meet Maryam. I remember they came, saw her, cried and then we all went to lunch. It was nice having someone else from the family meet her. Keep in mind, this whole time my parents and Brett's parents were there several times a week. Sarah too. I think Sarah was there 5 days a week for the first couple of months.
On January 4 we found out that Maryam had to have surgery. The surgery was called a PDA ligation. "Patent ductus arteriosus, or PDA, is a heart condition that is normal but reverses soon after birth. In a persistent PDA, there is an irregular transmission of blood between two of the most important arteries close to the heart, the aorta and the pulmonary artery. Although the ductus arteriosus normally seals off within a few days, in PDA, the newborn's ductus arteriosus does not close but remains open. PDA is common in neonates with persistent respiratory problems such as hypoxia, and has a high occurrence in premature children. In hypoxic newborns, too little oxygen reaches the lungs to produce sufficient levels of bradykinin and subsequent closing of the DA. Premature children are more likely to be hypoxic and thus have PDA because of their underdeveloped heart and lungs." Thanks Wiki! Seriously, all the medical websites are written in a foreign language.

On January 6 my Grams, Auntie Karen, Uncle Tom and Auntie Kathy all finally got to meet our little Maryam. I think it was slowly killing them being so far away and not being able to see her. I'm glad they came. According to my notes Maryam was stable but didn't seem to enjoy all the extra stimulation. But holding her head and feet made her feel better. The nurses also started swaddling her that day.
January 8. Brett and I got to the hospital at about 9am and spent the whole morning crib side. At 10:30 my family got to the hospital and at 11:00 Brett's mom got there. At noon we were still waiting to meet the surgeon. We did meet with the anesthesiologist and Dr. Seabald around 12:30 and then had to go wait in the waiting room. Right before 1:00 we got to meet the surgeon. The surgery was complete by 1:40. We got to see her and spend time with her immediately after the surgery. We stayed until 2:30. When we left she was still paralyzed and unconscious. We called the nursery at 4:30 and her nurse reported that she was awake and looking around. So, we headed to the hospital to enjoy a little bit of uncommon awake time. That night we went back to the hospital around 9:30 and spent a very scary hour there. She was having a hard time staying stable. Her oxygen needs just kept going up and up and up. It was horrible. Finally I had to leave because I just couldn't take anymore. We called an hour or so later and she was fine again.
That's the end of my notes from the NICU. I still remember quite a bit, but not dates. Now, looking back, I really wish I had kept writing. I know why I didn't. It was making me super depressed.
I think I'm going to take a break from all this NICU stuff and catch up on now!!! I know I've been lagging on my blogging. My apologies.

Prematurity Awareness A NICU Journey, Part 1

This was Maryam's home for the first few months of her life. That blue chair is where Brett or I would sit for hours upon hours. On the left of the isolette you can see the ventilator. I'll never forget the super fast tick, tick, tick, tick, tick sound that machine made. On the right you can see IV pumps. On the far right is the monitor where we'd stare at the numbers hoping her oxygen saturation numbers would stay up. Brett and I were obsessed by numbers. How high was the pressure on the vent. How many liters of O2 a minute was she getting. How well or not well was she "sating". But I'm getting ahead of myself.

I recently found some journal entries from when Maryam was born. I tried reading through them, but they made me cry. Silly, I know. I even remembered the conscious decision I made to stop journaling her NICU stay. Everyday I'd come home and write a small excerpt of what Maryam had gone through that day. Everyday I'd read over everything I had written from the beginning. So, everyday I'd come home and cry. I honestly think it made me feel worse. Had I been able to not read the whole thing in its entirety every night, I might have been OK. Or if I could have kept up the journal until she was stable and progressing I would have been great! But I couldn't and didn't. Sadly my journal ends on January 8th, roughly one month after Maryam was born. I guess I didn't know she was going to be in the NICU for another 4 months or I think I would have TRIED to continue.

Maryam was born at 5:26pm on Saturday, December 9, 2006. She weighed 750 grams, or 1 pound 10 ounces. She was 13 inches long. Her skin looked translucent. Her ears were flopped forward and stuck to her head. She couldn't breathe well enough to sustain her life. She had a PICC Line with numerous IV's hooked to it. She was on full life support. The only thing keeping her alive was machines and an underlying, subconscious will to live.

The first people to meet our little miracle baby were her daddy and her auntie Sarah. Next up were both sets of grandparents. I can't fully remember, but I'm pretty sure uncle Justin and auntie Lynn went in at one point and I think uncle Scott did too. Someone told me she was on Insulin, Lipids and Dopamine.

December 10, 2006 Maryam had her first of many blood transfusions. She was put under bili lights to help cure jaundice. That night at 9:00pm I was wheeled in on a gurney to meet my little baby. I don't have much of a memory of this at all. I remember two things, the tick, tick, tick, tick, tick of the high frequency vent and thinking, she's even smaller than I imagined. Apparently I was only able to stay for a few minutes because I was just too sick.

That night I had liver failure. That was the single most painful experience of my entire life. There are no words to describe how painful organ failure is. I honestly wanted to die to stop the pain. I was put on 1 to 1 care for the next 2 or 3 days. I was so sick.

December 11, 2006 Maryam lost weight. She was down 70 more grams. She was still under the bili lights. Nothing much had changed. We were just thankful that she was alive.

Life pretty much went on this way for days. I finally got to see her and have a real visit with her on December 13. Unfortunately she had a set back, one of her lungs collapsed and I had to wait until that evening to see her. That was a rough day.

December 14, 2006 I was discharged from the hospital. Leaving the hospital without my baby was horrible. I cried the whole way home. I couldn't think about the pain I was in, or the fact that I had to rest, all I could think about was her. I was worried sick that she'd die and I wouldn't be there to say good bye to the baby I was barely able to say hello to.

Today is Prematurity Awareness Day. Please spread the word about the toll prematurity takes on families. Before I had Maryam I thought prematurity simply meant that a baby was born before 40 weeks and needed to gain some weight. I had no idea the complications that can arise from it. I had no idea that years of physical therapy, occupational therapy, oxygen therapy, feeding therapy were a possibility. I had no idea babies could be born so early. I really had no idea that they could be kept alive by machines. Maryam is a miracle made possible through science and medical breakthroughs. Please visit www.marchofdimes.com to read up on prematurity.

I'll write more about Maryam's NICU stay in the next few days. I'm having trouble.

Birth #1 Part 3

Saturday, December 9, 2006 Most people probably see the date of their first born child's birthday and smile, I almost always get sad. That day was one of the hardest days of my life. Just writing about it brings me to tears. My apologies in advance if this post is disorganized, written poorly or is hard to follow.The details of this day are very blurry. I remember Brett being there. I remember my mom and dad being there. I remember my Mother-in-Law there, but I can't remember if my Father-in-Law was there or not. I remember sleeping a lot because I didn't sleep well the night before. I remember having a very bad headache. I remember having a nurse that I called "The Oxygen Nazi" because she kept coming in and warning me about my cannula not being on properly. I remember coughing A LOT.I remember in the evening my sister called my mom to check on me and my mom told her to stay home that the baby wasn't coming today. I remember my MIL leaving back to Orange County. (she had been staying there taking care of Grandpa Langdon) I remember telling my nurse that I was having real trouble breathing. I remember feeling like I had a very heavy weight on my chest. It hurt to breathe, it hurt bad. I kept coughing.My nurse told me she was going to talk to the doctor. I guess the doctor ordered a chest x-ray because a few minutes later a giant x-ray machine was moved into my room. They had me sit up in my bed, put a lead coat on my belly, asked everyone to leave and took the picture. I stared at the clock. It was 4:45pm. A few minutes later everyone was in my room in a great room. Brett's friend Lou drove in from LA to visit us! I think he brought something. A few minutes after that, chaos ensued.My room was flooded with doctors, nurses and administrators asking everyone except my husband to leave the room. It was 5:02. They closed my door and told me I had pulmonary edema and it was time for my baby to be born. They said stuff like, "We can't wait anymore." "You did the best you could and the time is now." I cried. Brett cried. Some lady handed Brett some scrubs and told him to change. He opened the door, told my parents we're having the baby now. He apologized to Lou, thanked him for coming and went to change. They started moving me on to a gurney. Brett came out from changing and walked out of the room next to my gurney. I smiled when I saw my parents. I didn't want them to be sad.
My mom started calling everyone to come to the hospital immediately. I remember Brett's parents came back, almost immediately after getting home. Sarah and Scott came, Sarah said that Scott drove 100 MPH nearly the whole way. Justin and Lynn came. My mom told me everyone cried when she called them. She called Brande and my Grams, who both also cried. Everyone else found out after Maryam was born.

I got wheeled into an operating room. I had never been in one before! I remember thinking how white it was, how bright it was. I looked over and saw a baby table with blankets and a bright light over it. It seemed like there were dozens of people in there with me, but Brett wasn't. They asked him to stay outside. I guess he wasn't allowed in while they started my spinal tap. After they got my spinal tap going they were about to start my C-section when I asked them if Brett could come in now. Someone went to get him, he came in, kissed my forehead, held my hand and told me he loved him. He still had tears in his eyes.

I remember being asked if I was comfortable. I remember feeling very cold and shaking. The anesthesiologist gave me something for that. Then I remember feeling nauseous, he gave me something for that. I remember Brett saying he doesn't want to look behind the blue curtain, but he couldn't help it. Ha! I think he still regrets that.

At 5:26pm there was another person in the room. She cried! I remember crying and saying something like, she sounds like a kitten. I cried, Brett cried. He tried to see her. I think they held her up for me to see before I didn't see her again for 4 days. After that, I passed out.

I woke up in recovery with Brett next to me and the Oxygen Nazi next to me. I remember that hot iron ball being back in the back of my throat. I think I asked if Maryam was alive. I felt that guilt and fear again. I was very nauseous. Its all very blurry. I think my sister came in to recovery to see me. I asked her and Brett if they had seen Maryam yet. He said he wasn't sure if he was allowed to yet. Sarah said, let's go! And they were off! I think I went back to sleep. After I woke up they put me into a room. All I could think about was her. That guilt was back. I kept thinking stuff like, why couldn't I do this? Why couldn't I stay pregnant? Why does my body suck so much?

Brett brought me pictures of her. I cried. She looked so small. There were more wires and tubes sticking out of her than my mind ever imagined.

These pictures are the first pictures taken of Maryam. These pictures is how I first saw my baby.

Birth #1 Part 2

The first afternoon and night I was in the hospital I remember feeling three very distinct things; pain, guilt and fear. The doctors and nurses did what they could for the pain. A mixture of Morphine and at least one other drug took care of the pain for the most part. There were times where it was excruciating, other times where I was numb because all I could think about was her.
Guilt. Unfortunately there wasn't anything they could do for my guilt. I felt horrible. I had a few fetal monitors on me all the time. I kept thinking about Maryam "playing" in my tummy. When you're laying flat on your back, or on your side in a hospital bed, you feel every move your baby makes. It felt like she was playing in there! She was constantly on the move. I kept thinking things like, "my body is failing her." "She's going to be ripped from her comfortable home, way too early, be horribly afraid, terribly uncomfortable maybe even in pain, she's going to be poked, prodded or operated on, and maybe not get the chance to live at all and its all my fault." Guilt, it can be a horrible thing. It was nearly all consuming, until fear crept in.
Fear. I never truly knew fear until that day. And it was made a reality when the head of the NICU, Dr. Schneider, came into my room to discuss my "options." I remember thinking "Options? Yay! Options! This has to be good news!" Ignorance. I don't even know how to type these words... bare with me. He began by telling me about the NICU and that normally I'd get a tour before the baby was born but that due to how sick I was, I couldn't do it. He then told me something like the hospital policy is that if a baby is born after 25 weeks gestation, they do everything they can to help him/her survive. Since I was only at 24 weeks 4 days, I, as Maryam's mother, had to decide whether or not I wanted them to try to keep her alive. My heart sunk into my stomach. My breathing became rapid. I'm pretty sure my eyes welled with tears. I remember staring at him wondering how many times he's told a pregnant mother these words. I remember thinking, he has a crappy job. Then I remember asking him, "Can this wait until my husband gets here? He's coming in from Vegas and should be here within a few hours." I remember the relief on his face when he said, "You have a husband coming? Yes! Take your time, you have up until you deliver."
When Brett got in I told him about the conversation I had with Dr. Shneider. He asked me what I thought. We had already made the decision that the baby would have to come out if I was about to die. It would be hard enough for Brett and our families to lose a baby, losing me would just make life too hard, I knew this. I HATED it, but I knew it. So, I took the cowardly route. I suggested that we wait. There wasn't any reason to make that horrible decision before we had to. So, we just prayed that I could stay pregnant for 3 more days and take it out of our hands.
December 6, 2006 Brett and my mom were troopers. One of them spent the night in my room every night. Most, if not all nights, Brett was there and during the day, my mom was there for it all. I had Brett, my mom, Brett's mom, our dads, my sister, brother, Scott, Lynn, my friends, Brett's friends and even my Uncle Richard popped in from Lodi for a visit. At any given point of the day or night, there was someone else in my room. No one wanted me going through this alone. I'll be forever grateful.
Day two my IV collapsed. Little did I know that this would be a daily occurrence. It SUCKED. When the body is super swollen to the point that you look like Memory Foam, its very difficult to get an IV in. My swelling had gotten so bad that I felt like the skin on my arms was just going to split open. It was very painful. I kept waking up in pain. The doctor decided to give me Ambien. BIG, HUGE mistake. The Ambien couldn't keep me asleep through the pain. So, I would wake up from the pain, but my brain would still be partially asleep. Brett thought I had gone completely psychotic. I kept talking about being in line at a grocery store. Weird stuff. He told the doctor not to give me anymore Ambien.
December 7, 2006 My body was falling apart. I was told that I was having kidney failure. I wasn't producing enough urine. If I didn't start producing enough urine they were going to have to deliver the baby before the kidney failure became permanent. Not good news. Brett made up cute little cheers about peeing, it was funny. We tried to make lite of a very heavy situation.
My IV collapsed again and they were able to get it going again in one of my hands. I was still very uncomfortable. I was moved from my left to my right to my back throughout the day, but nothing helped. I hurt.
Dr. Schneider came back to tell me that I had made it to 25 weeks and now the directive is to do everything possible to save "the baby." I remember looking at Brett and smiling, I don't know what we would have decided and I'm glad I'll never know. But then came the bad news. 35%. He told us that our baby only had a 35% chance of survival. That heart to the stomach feeling came back, it came back with a vengeance. Then he continued. Assuming that she made it, of that 35%, 75% chance she'll have a severe handicap from a brain hemorrhage or other complication from the severity of her prematurity, 50% chance that she'll have a moderate handicap, like CP, hearing loss, vision loss, limited mobility, and about a 5% chance that she'll have no problems at all. He asked if we had any questions, I'm sure we did, but I can't remember asking them. I don't remember him leaving the room.
I remember laying there crying thinking about my poor baby. I couldn't get the hurt out of my throat. The guilt and fear just settled there in the back of my throat like a hot iron ball. It burned to cry, and it burned not to cry.
December 8, 2006 My kidneys made a come back and I was peeing again. I can only assume they gave me some sort of medicine to help with that, but I can't remember. I do remember that my IV collapsed, again. This time they couldn't get it going again in all the usual places. I laid in that bed for 2 hours while I was poked in my arms, legs, hands and feet. The needle would just go in and out, in and out, never striking a vein. (My poor mommy sat there watching her baby go through this. I didn't fully appreciate that fact until after Maryam was born.) I kept thinking I'd start leaking water! I didn't, but that would have been REALLY amusing if I did. Eventually the doctors called 2 anesthesiologists in to take care of the IV situation. They ended up putting the IV in my Jugular. Yes, my jugular. SCARY. I was afraid to move for the next two days because in my head, if it came out, all the blood in my body was coming out with it.
My kidneys were doing better, my IV was going again but then I started coughing. They put a pulse oximeter on me and determined that I needed some extra oxygen. So, now I had a nasal cannula on to help me breathe. I remember dozing off and waking up from a horrible dream. I remember dreaming that my baby was born. I woke up practically screaming at Brett asking if she was alive. He calmed me down and explained that it was just a dream and that I was still pregnant.
I remember crying a lot that day and the next. It seemed like every time I'd shut my eyes tears would fall down my face and into my hair. I was tired. I hurt. I felt guilty. I was scared out of my mind. I felt bad for my husband. I felt bad for my mom. I felt bad for Sarah and Scott who couldn't even enjoy the fact that they were pregnant. I felt bad for my Mother-in-Law and Father-in-Law because they canceled their trip to VA to see Brett's sister for Christmas.
That night my room was full of visitors.
I didn't sleep that night. I think I knew Maryam was going to be born soon.

Birth #1 Part 1

November is Prematurity Awareness Month. I planned on doing a blog entry for everyday of the month leading up to the 17th, which is Prematurity Awareness Day, but I haven't had it in me. This is a tough topic to discuss. Nearly four years have gone by and I'm still not over it.

December 9, 2006 5:26pm Maryam was born at the gestational age of 25 weeks and 2 days. She weighed 1 pound 10 ounces and was 13 inches long.

A little perspective on the photo above. The diaper that the nurses placed over Maryam is actually roughly the same size as a maxipad.

Maryam was born prematurely because I got preeclampsia with HELLP Syndrome.
Definition By Mayo Clinic staff
Preeclampsia is a condition of pregnancy marked by high blood pressure and excess protein in your urine after 20 weeks of pregnancy. Preeclampsia often causes only modest increases in blood pressure. Left untreated, however, preeclampsia can lead to serious — even fatal — complications for both you and your baby.
If you have preeclampsia, the only cure is delivery of your baby. If you're diagnosed with preeclampsia too early in your pregnancy for delivery to be an option, you and your doctor need to allow your baby more time to mature, without putting you or your baby at risk of serious complications.
HELLP syndrome which stands for hemolysis (the destruction of red blood cells), elevated liver enzymes and low platelet count — syndrome can rapidly become life-threatening for both you and your baby. Symptoms of HELLP syndrome include nausea and vomiting, headache, and upper right abdominal pain. HELLP syndrome is particularly dangerous because it can occur before signs or symptoms of preeclampsia appear.

The days leading up to December 9, 2006 (Part 1)
November 4, 2006 Brett and I went to Kaiser for my "Big" ultrasound. At this ultrasound the ultrasound images can help your doc evaluate your baby's growth and development and determine how your pregnancy is progressing. This is the day we found out we were having a little girl and decided on her name, Maryam Lee.
December 1, 2006 (Friday) I had lunch with my sister Sarah at The Macaroni Grill. I was SUPER swollen. We talked about my pregnancy, talked to the waitress about her new pregnancy and I guessed that Sarah was pregnant. She denied it, of course. We had a nice lunch. This would be the last time I ate at The Macaroni Grill.
After lunch I went back to my office where my good friend Jessica told me that my face was REALLY swollen, to which I replied, "Are you sure I'm not just fat?" Ignorance. The bridge of my nose was swollen into my cheeks. I took her advice and called L & D at Kaiser in San Diego. The RN that screened my call asked several questions, I answered all of them honestly and she determined that the mixture of my high sodium lunch, my gestation and the recent heat wave contributed to my swelling, suggested I go home, put my feet up and rest for the weekend. Well, I went home, I put my feet up, but I certainly didn't rest all weekend. Ignorance.
December 4, 2006 Brett left in the morning on a business trip to Las Vegas. I went to work like any other day. I was told that I looked puffy. I felt horrible. My swelling in my feet had now gone all the way up my legs. The swelling in my hands had now gone all the way up my arms. My face and neck were both swollen. I looked like a 250 pound version of myself. I couldn't type or hold a pen anymore. At 5 I went home for the night. I laid down in my bed and didn't get up again until the next morning.
That night Sarah and Scott called to tell me their wonderful news that Sarah was pregnant with my niece Charlie Mae! Yay! I was so happy for her that I didn't tell her that I was in excruciating pain in my chest and was having trouble breathing. I called my dad and asked him what I used to take when I'd get pleurisy as a kid. He told me I'd take Tylenol with Codeine. We both knew I couldn't take that pregnant. So, I just took regular Tylenol and went to sleep. Ignorance.
December 5, 2006 I went to work like any other day. When I got there I was told that I absolutely have to go to see the doctor. My co-workers insisted. The branch manager wanted someone to drive me, but I assured them I was fine! I called the appointment line for Kaiser to see if I could be seen that day. I was asked if it was pregnancy related and I said no, that I thought I had pneumonia or pleurisy because it hurt when I took a breath. I was scheduled up in Rancho Bernardo at 11:10 with the doctor who was about to save my life and Maryam's life.
I checked in at reception and waited to be called in. I was called in within minutes and that's where the blur starts. Everything happened fast, or so it seemed. Looking back I know it took more time than it seemed, but at the time, wow! I was seen by the nurse first, typical right? She checked my temp, weight, blood pressure....blood pressure...blood pressure...blood pressure. That's when I knew there was a problem. She said, "I'll be right back with the doctor." Seconds later, or so it seemed, the doctor was in the room with me taking my blood pressure manually. 220/180. He must have said it 4 or 5 times. He said that I need to go into the bathroom and pee in a cup, then come back and lay in this bed. In the meantime, he was going to call the hospital and talk to a specialist.
Again, what felt like seconds later, the doctor came in, told the nurse to call 911 and told me that I was going to the hospital because he and the specialist at the hospital were worried I was going to seize. My response? "I don't have a history of seizures, so I'm just going to go ahead and drive myself there." His response? "Lay down and wait for the ambulance, you're very sick." He left and told his nurse to not leave my side. I asked her if she thought I should call my husband and she said, "No, go ahead and wait until you get to the hospital, it may end up being nothing." Ignorance.
Again, what felt like seconds later, the ambulance was there and I was being carted off on a gurney. When I got into the ambulance the nice EMT was trying to get an IV in my super swollen body and just couldn't. He tried for what felt like forever and a million pokes. Eventually he gave up and we were on our way.
I can't remember if I called Sarah first or my mom first, but either way, the next thing I remember, I was in the hospital and Sarah was there. She says she backed out of the In-N-Out drive-thru to get to the hospital immediately. In fact, she was there waiting when my ambulance got there. I remember saying something like, "I think this is all a little over blown." and I think she said something like, "I think you're very wrong."
Triage. My Triage doc took my blood pressure again and it was the same. I remember some of the things he said to me. "We're going to give you a steroid shot to help the development of your baby's lungs. You're very sick. You're not leaving this hospital until your baby is born. You have what is called preeclampsia and the only cure is to deliver the baby." To which I said something like, "doc, I'm not staying in your hospital for 4 months, that's absurd." To which he said something like, "4 months? You're lucky if you get 4 days, right now our short term goal is 2 days for the steroid and our long term goal is 3 weeks." He walked out to get someone or something. I turned to Sarah and said, "I think that's just worst case scenario." She said, "You're wrong. You're very sick, he just told you. You need to call Brett now." Damn.
The rest of that night is a blur. At some point my mom got there, Brett's mom got there and Brett got there. I was surrounded by family. I was put on Magnesium to help stop me from seizing. I really can't tell you all the meds I was on. Again, its pretty blurry.

I'll write about days 2, 3 and 4 in my next post. This has been more emotionally taxing than I anticipated. If you have any questions please comment. I'll answer them!