"Woulda Shoulda"

With all this stress going on with Jax I have been laid up.  Stress hits me in my back and next.  This time it was particularly bad.  It started hurting right as we were pulling into town Wednesday night and didn't let up until Thursday night.  Brett took very good care of me and the kids though.  Thank you to him.  I hate when that happens.  Its been happening for years now.  Ugh.
But with being out of commission yesterday I didn't get to write a post on Maryam's "Woulda Shoulda" birthday.  March 22, 2007 was Maryam's due date!  Nuts, right?  Considering we celebrated her birthday over 3 1/2 months ago its a strange concept to wrap a brain around.
Had she been born around her due date she would have been born in spring instead of fall.  Yes, she missed a whole season by being in the NICU.  Had she been born on time the NICU wouldn't have been her first home.  She probably wouldn't have spent her first 2 1/2 years being fed via G-tube.  She probably wouldn't have had heart surgery.  She definitely wouldn't have had her eye surgery.  She wouldn't have needed countless hours of physical therapy and occupational therapy.
I sometimes think about what it would have been like to have Maryam on time.  I wonder if my water would have broke before I went to the hospital.  I wonder what a contraction feels like.  I wonder what "going home" outfit I would have brought for her.  I wonder what Lamaze classes would have been like.  I wonder what it would feel like to hear her cry and have her lay on my chest and hold her as I got to admire my perfect, healthy beautiful baby girl.   I wonder what it feels like to leave the hospital with my baby and not have to go back.
I wonder...

I don't know how long I'll celebrate Maryam's "woulda shoulda" birthday.  Frankly I can celebrate it as long as I want, I guess.  I don't think anyone would ever tell me not to think about it, because how could I not?

Today Maryam is a healthy, smart, beautiful little five year old girl.  I appreciate everyday of her life. I love every little scar on her body.  I'll never forget any of those days we got a call to come see Maryam because she's taken a nasty turn.  I'll never forget sitting on the floor next to the elevator waiting for her to come out of surgery.  I'll never forget the hours and hours of sitting next to Maryam's isolette. All these things are what make Maryam, Maryam.  And all those things have helped me become the mother I am today.  I appreciate it all. 

 

Maryam celebrating her due date from the NICU.

 

Maryam's first woulda shoulda birthday

Happy Bloggerversary to me!!

July 14, 2007 is when I first started blogging about Maryam. Maryam my little miracle baby who was going to have surgery in a few days. Today is that day, four years later. Four years ago, if you were to tell me that I would have a perfectly healthy, happy little four year old girl who was all caught up, eating, breathing and living without any assistance, I probably would tell you to shut-the-hell-up and remind you that you're not helping. I would probably punch you in the face if you told me I would have a 22 month old son who was equally healthy and happy. I take that back, I would DEFINITELY punch you in the face.
We've gone through so much since that day four years ago. Maryam came out of surgery and stayed in the hospital for a few weeks, but less time than we anticipated. Maryam stopped taking a bottle August 4, 2007 just 2 weeks and 3 days after her surgery that was supposed to make it easier for her to eat. May 28, 2009 she successfully made it through the CHOC inpatient feeding clinic. She went in May 4th 100% tube fed and came out 4 weeks later only 35% tube fed. 4 months later, she was eating 100% of her food orally. She had a few trips to the ER, one because she pulled her O2 tank on her head and needed stitches, another few times for pneumonia, (one time she ended up hospitalized for 3 days) and then there was the time she ended up in the ER because she took a header on Mother's day at Disneyland.
Maryam came home on 1/4 L of O2 per minute, 10 medications, a feeding pump and an apnea monitor after being in the hospital for nearly 5 months. During those 5 months she had 3 surgeries, heart, eye and stomach. Since then she's had one more surgery, to close up the G-tube spot. Closure in the best sense of the word. Currently she is on three medications. She has an inhaled steroid to help prevent breathing problems and two antihistamines. She has gone from being delayed by as much as 6 months physically and 4 months cognitively to being caught up and in some areas ahead.
Little Maryam has gone through more in her 4 1/2 years than most people go through in a lifetime. And we as parents have gone through more as parents in 4 1/2 years than most parents ever have to go through. I am grateful that Maryam is doing as well as she is. I'm constantly reminded of how blessed we are. Every time I hear of a baby who didn't make it, or a baby who is struggling I think back to those nights we didn't think she was going to make it to morning. I think back to the nights of researching feeding disorders, sensory integration disorder, occupational therapy tools, feeding clinics all around the world, and how hard it was to read through the tears streaming down my face.
My brain is full of memories I would like to let go. I would like to move on and never think of them again. But I can't. Those experiences, no matter how horrible they were some times, have made me the mother, woman, person I am today. I have to hold on to them so if Maryam ever asks about any of it, I can tell her. I want her to know her story of survival. Her parents' story of love. Her friends and family who prayed for her everyday and called, texted or emailed, or checked on her blog to see how she was doing. She needs to know all of this.
My experiences as a mother of a "special needs" baby has enabled me to help other mothers who seek advice or sanity. I have friends who go through horrible experiences with their baby and they reach out to me. I'm very happy they reach out to me. It helps me know that I've gone through what I've gone through to help people. Not just Maryam and Jax and each other, but our friends and family too.

2010 through the rear view mirror

When I first started thinking about 2010 all I could think about was how crappy it was. Upon further review, it was pretty crappy, but there were also a few awesome things that happened too.

Here is a month by month list of things that immediately affected me and/or my family. (That I can remember!)

January- In January we had two great things happen in our family.
My niece Addison Marie Haston was born! She was born on January 15, 2010. She was perfect in every way. She weighed in at 7lbs 7ozs. Here is a recent picture of Addison. Also in January, Brett got a new job!!! Brett got hired by a company called Homeland Security Solutions Inc and works on the 29 Palms MCAGCC. This was a HUGE blessing because it meant we wouldn't have to pay $1000/month in medical insurance premiums anymore. Yay!

February- February was a pretty crappy month.
On February 14 Maryam got really sick. She ended up in the hospital for 3 days with pneumonia and the flu B virus. She was sent via ambulance to the Riverside Medical Center where she was admitted. It was horrible. That first night I honestly thought I was going to lose my daughter. I cannot remember ever being that scared in my entire life. Here is a picture of my poor baby.

February also sucked because it was the last time I got to see my Grams "healthy". Some of you may know that my Grams and I were super tight. I loved her SO much. I knew in the back of my mind when we went to see her at the beginning of February that it would be the last time I'd ever see her. I'm glad she was able to meet all of her Great Grandchildren (so far...) and while we were there we took tons of pictures.March- Another crappy month.
On March 25, 2010 my Grams died. Mary Andonian was a wonderful woman. She was a wife, mother, grandmother, great grandmother, sister and friend. Everyone who knew her loved her. She was the best person I've ever known. She is the person I named my daughter after. Of all the people in the world, I chose her. I chose her because she was the best person in the world. It made sense.
Grams was the type of person that you called "just because". Even if I had absolutely nothing going on, somehow I always found something to talk about with her. I called her at least once a week. It was easy. She always had something nice to say to me, she made me feel good. On my worst days she made me feel like everything I did had a purpose. She thought the world of me, or at least made me feel like she did. She always thought I was brilliant, hilarious and a great wife and mother. If I'm half the woman she was, I'll be doing OK.

April- I can't think of anything that happened in April. I guess it was the universe's way of giving our family a break after losing Grams.

May-
May was another crappy month. My Great Auntie Mary died. Another Mary Andonian gone from the world. She made it to 92 years old. She was my grandfather's sister. I never met him. He died before I was born. Auntie Mary was Grams' sister-in-law. She was a funny lady. She could make anyone laugh!
Also in May, Brett's cousins Sam and Marcy lost their father. I only met John a few times, but he seemed like a nice guy. I cannot imagine losing my father while I was in my 20's. I'm genuinely sorry for their loss.
Also in May was the great Mother's Day Disaster of 2010. Maryam took a header at Disneyland and ended up in the CHOC ER with stitches. Yay! You can read about that fiasco here.

June-
In June Brett's sister's family moved to Alabama. Maryam was finally healthy enough to play with the boys and the boys moved away! SUCKAGE. Here is a recent photo of the boys. JJ is in a Master's program at an Air Force base in Montgomery. They seem to like Southern living!

June 2nd Jax had his first of two kidney surgeries. The surgeon had to go in and and remove an UPJ obstruction. I won't go into all the details because I already have, in this post. But here is a picture from after the surgery.

July-
In July my sister's family moved to Tennessee. Yikes. I knew it would happen eventually. Scott is from there and wanted to go back home. Lame. California is WAY better than Tennessee, but whatever. Ha! Anyway, Sarah got a job in advertising at the Tennessean newspaper. They're doing well. You can read about them on Sarah's blog.
Also in July Jax had the second part of his surgery. The part where they took out the stint that the surgeon placed in his first surgery. You can read about it here.
July is also the month that mama went back to work. YIKES. I LOVED being a stay at home mom! BUT, unfortunately the medical bills were backing up and we had to start taking care of it. The medical bills is the real down side to having medically challenged kids. They don't ever stop coming! We pay out roughly $500-$700/month in medical bills with no end in sight. Fortunately I only have to work part time, but even that seems too much. I'd much rather be home with my littles, but hey, that's life.

August-
2010 was the year for moving! I June Brande moved, in July moved and in August Justin and Lynn moved! Justin and Lynn moved to the Pacific North West. They moved to a little city outside of Seattle called Redmond. We miss them! Lynn has a job at Amazon.com. They seem to like living there!

September-
September was pretty great! Jax turned 1 on September 11! He's AMAZING. He does everything perfect. He started walking the day after his first birthday! Here is a picture of Jax walking around the sprinkler park. My cutie baby walking.

September was SUPER great for Maryam! On September 20 after 3 years, 2 months and 3 days Maryam had her G-tube (feeding tube) removed!!!! That day is my favorite day of all of 2010! I cannot express the feelings I have for when that happened. We worked incredibly hard towards that day. Some days it felt like it would never come! Now she barely has any memory of it ever being there! Its pretty darn great. You can read about her G-tube removal here. You can read about her G-tube placement here.

October-
In October Brett's Grandpa was put in the hospital. He's had a rough go over the past few months. He's been in and out of the hospital and in and out of a rehab center. Brett's Dad has been living in Orange County so he can be by his father's side. Some good news on Grandpa is that all of his cancer is gone! Now we're just waiting to see if he can regain his strength so he can go home. (He really wants to go home.)

November-
In November Brett and I celebrated our 7 year anniversary. Its kind of crazy to think of what we've been through together in the past 7 years. Hopefully the next 7 years will be equally eventful, but unequally stressful! In the past 7 years we've had 2 preemies. Preemie 1 had 3 surgeries, 3 hospital stays (the first one lasted for 5 months), 5 trips to ER and 1 ambulance ride. Preemie 2 had 2 surgeries and 2 hospital stays. (He looks SO easy in writing!)
I'm planning a trip to somewhere GREAT for our 10 year anniversary. No kids, just sun and the beach.

December-
My little miracle baby turned 4 on December 9th. It was the first time she was healthy enough on her birthday to have a real birthday party! With kids and a bounce house and games! Its incredible to be able to say that Maryam is a healthy normal 4 year old kid. Here are some photos from here birthday celebration.
Also in December, on Maryam's birthday, Jax's surgery was called a success!! No more kidney surgeries for Jax!!!! Yay!!!

So, as you can see, 2010 had its ups and downs. I'm sure most years are like that. Its just taking the time to actually review the year that makes you really see it. There were other great things that happened in our lives and there were also some more struggles. I decided to keep my post about my immediately family.
I hope you all had a great 2010 and that 2011 is awesome!!!!!

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!

Maryam and Monkey

Here is Maryam with "Monkey" in October 2008.

Here is Maryam with "Monkey" in October 2010.

My baby girl is no longer a baby is she? I seriously miss her as a baby. I totally get why people have baby after baby after baby! I really miss picking out her clothes. Ha!

Happy Woulda-Shoulda 2009

Today is Maryam's due date! 2 years ago today Maryam was due to be born, BUT, she came 14 weeks and 5 days early instead. Ha! I have NO idea how long Brett and I will recognize today, part of me thinks we'll always do it. There is just something special about it. Its hard to believe that a baby can survive being born nearly 15 weeks early. And recognizing it just seems to make sense. Everyone knows that she's our little miracle baby!!!

Below are photos from March 22, 2008. What a difference a year makes, huh?

Wow! What a difference a year makes!!!

2009 Valentine's Day Card
Don't be offended if you didn't get a card....I ran out of stamps and still haven't made it to the Post Office. My apologies.

2008 Valentine's Day Card

Its hard to believe that Maryam has grown so much in the past year! Of course, she's only gained 11 pounds, but she is taller and way more developed.

Perspective.

Above you can see Maryam's Rose Bowl jersey layed out nicely next to Daddy's Rose Bowl jersey. What a difference, huh? Below you can see Maryam all dressed up for the game, isn't she a cutie?

Here is Maryam in her bean bag chair enjoying the game. January 1, 2009

Here is Maryam all dressed up for the Rose Bowl and enjoying the game. January 1, 2008. What a difference!

Maryam is two years old

I get emotional around Maryam's birthday, I know its lame, but I can't help it. I also get crazy around Maryam's "release date" too. I can't pinpoint exactly why those particular dates get me all worked up, but they do. I kind of got emotional around her due date too, but not like her birthday....CRAZY Mommy. Well, now that her birthday has come and gone, I feel more at ease writing about it. The day Maryam was born was pretty traumatic, probably not much more than any other birth of any other baby on the planet, except for the fact that it happened 15 weeks earlier than it should. And really, the actual birth part was fine, it was the 5 months that followed that really took a toll. You can read all about that day here.

Maryam has come so far from that day. She's a very happy, healthy two year old toddler! She LOVES books, animals and Elmo. She has done more than anyone dreamed possible. I'm very grateful for her. Maryam is an amazing little girl that discovers something new everyday! I couldn't be more proud of my little punkin. She is my gift from God and who am I to question him?

I wanted to show you some pictures of development. These first few pictures are from the day she was born....

And here are some pictures of Maryam when she was one year old....

Now Maryam at two years old....perfect.

Could we be any luckier? Nope, I don't think so.

Just thinking

Two years ago today I was in the hospital. CRAZY! We were supposed to be flying to VA for Christmas. I was supposed to be excited about being pregnant....not completely scared out of my mind! I kept thinking, and I'll never forget this, "Its not fair. She's totally healthy inside. If she comes out she will be sick. She didn't do anything wrong. Its my fault, I HATE my body for doing this to her. What if she dies? How do I forgive myself? Will Brett hate me if she dies? Will Brett hate me if something is wrong with her because my body doesn't want to be pregnant? What if I die, what will Brett do? If she is born, how long will she live?" I know that all of those thoughts are completely emotional and very irrational, but they were my thoughts. Even today some of those thoughts go through my head. We've all heard of "mother's guilt" but "preemie mom's guilt" is RIDICULOUS. I wonder when or if it will ever go away?
Skip to last year this time. Maryam was labeled "failure to thrive" AGAIN. She barely weighed 14 pounds, she had basically stopped growing and developing.
Skip to today! Today she is doing things that no one imagined she would ever be capable of! She's walking...no, she's running. She's talking and we can understand her. She's starting to swallow foods and drinks. I could not ask any more for Maryam for this year. She's our little miracle and she proves it daily.

22 months

I think its funny that we mom refer to our babies in months. Today Maryam was exactly 22 months. STRANGE. Its hard to believe that in only 2 months my little baby will be 2 years old. When are we supposed to stop saying their age in months anyway? Maryam is wearing an outfit that Auntie Maymay (My friend Mayda) gave to her. I never thought this would happen to me, but I'm actually kind of sad that she's big enough to be wearing 24 months. Its weird, because for the first year and a half of her life I was SUPER happy when she'd go up a size because that meant she was healthy and growing. After hearing "failure to thrive" too many times you start praying for weight gain and larger clothes. BUT LOOK AT HER A YEAR AGO!

So small. Its almost like looking at two different babies! What a difference a year can make, well, what a difference a month can make! Just a few months ago Maryam was still on oxygen and not walking. Maybe that's why we mothers refer to our babies ages in months, because so much can happen in a month. OK, I solved the mystery.

Well, I've been a very bad blogger. I wrote the above passage yesterday and never published it. DUMB. Oh well. This photo is of Maryam and her OT Dawn. Dawn will be having a baby of her own in a few short weeks. Maryam really seems to like Dawn. Of course today Maryam did not perform to her best abilities. BUT she did swallow a Cheerio and a few pieces of a french fry. She also swallowed A LOT of ranch dressing which is good because ranch dressing has many calories in it!
I've been taking Maryam to the park in the morning so she can run out some of her energy. I've noticed that when she's outside all she wants to do is run around. It got me thinking that maybe she's not outside enough. So, I'm doing the good stay at home mommy thing and taking her to the park. Yesterday some moron lady asked me Maryam's age. I told her that she'll be 2 in December. (I avoided the whole month age thing that time...its hard to remember! I have to remember two! She's 22 months actual but 18 months and 1 week adjusted...c'mon!) She actually looked at her and said, "why is she so small?" Um, she's not! I got mad and wanted to say, "why are you so ugly?" but I didn't. I just said "She's not small, she's huge, she started out as only 1 pound 10 ounces." The lady said, "oh, wow. Sorry." I just took Maryam off the swing and left. Of course that made Maryam really mad...she wasn't done swinging, but I didn't want to have to subject myself or Maryam to anymore idiocy. I know that we preemie moms are a sensitive bunch, but really, Maryam isn't small for her age at all, not for her actual age and especially not for her adjusted age.

Bumbo Baby

Maryam took the Bumbo off the chair at the dining room table to do this. First she was kneeling in it.

Then she was standing in it.

Next she tried moving it. That was hysterical because she just couldn't get a good hold on it. Either her hands are too weak or the Bumbo is still too heavy for her.

I thought I'd post this picture so you can see how the Bumbo chair is supposed to be used. This is Maryam last year at this time. Its almost hard to believe its the same baby!