School is Starting

At least three of the babies born in the six months before Sam was born are starting Kindergarten.  Two   began today.  Their pictures were posted, eager, newly five years old, going to school.   I held both of them as babies, while I was still pregnant with Sam.   The little boy as a newborn cuddled against Sam in my belly and fell asleep, giving his mom the first break (and quiet) she'd had all day.   I still remember that time so clearly.  It's hard to think that this little boy is now going to school.  It's difficult to see that he's growing up.

Don't get me wrong . . . I am glad that he is growing up.  That is better than any alternative, I KNOW, but my Sam is really getting left behind and that upsets me.    

Poem I Just Wrote - A Poem to my Tween Self -#1

(Note: I just wrote this.  I have not really attempted to polish it yet.)   

A Poem to my Tween Self - #1

You read books

day and night.

You read stories

to be able to disappear
in time and place

just for a little while.

Other times you try

to write the original stories

that flit through

your mind constantly –

even at school.

You have discovered

Lurlene McDaniel’s early books by now.

You love the melodrama of illness and hospitals,

and of boyfriends dying. 

They are very quick and easy

to read.  You love 
them, but think these things

will never happen

to you.

In your mind, you think you will

grow up and go

to college – maybe major

in meteorology – and someday

in the vague distant future

get married. 

There will be four children –

at least three girls and then

a boy for balance.  You always wanted

a little sister, and Mom told you to have

a daughter someday instead.

You never even have

an inkling

that you might have

two little boys
someday

and that the first very loved

and wanted

baby boy

might die

in the hospital

in the middle of

the night.  

GMA's Three Words

I know that, apparently, ABC's GMA did their live Three Words event.   However, are they still going to accept submissions for non-live viewings?  The reason I ask is that I would like to submit one for April 3.    It will say: "Miss Our Sam".   It will be four years since our little Sam died.


And our little sub baby, N, will be turning two on Friday.  He can say "Sam", and names him every time we show him Sam's pictures.   We don't think N really understands, but he knows about Sam and that is important.

My FB Posts from while Sam was Alive

I really, REALLY wish that I had posted more on FB . . . not a lot of people say that now, but almost five years ago, I wish I had, when it came to Sam.  For myself, and not for anyone else.   We wanted to keep a lot of things private, but I wasn't writing much down, either.  I wish I had written more about what I was feeling and such.   


I reserve copyright for all of the following statements.  I have included the majority of status updates from that time . . . some I left off because they were repetitive, such as checking the radar (that winter was really intense, weather-wise.)
 
December 13, 2007: "has given birth. Wow."
December 14, 2007: "is having success. To say how would be TMI." [Successfully pumping!]
December 17, 2007: "is hopeful."
December 18, 2007: "is relieved."  [That is the day of Sam's first surgery . . . his Norwood, etc.]
December 20, 2007: "does not like to watch Teletubbies, which is on in the waiting room."
December 25, 2007: "trying to have a good Christmas." [Sam was on ECMO.]
December 27, 2007: "wishes she knew influencial political people so her inlaws could get travel visas."
December 30, 2007: "is relieved that Sam is doing okay." [They got him off ECMO.]
January 2, 2008: "is going to pump in a few minutes."

January 2, 2008: "is watching Supernanny."

January 3, 2008: "is slightly worried."

January 4, 2008: "is very jealous that Kelly just used all 7 letters in scrabulous."
January 8, 2008: "sent her husband on his way to his Philly and Baltimore interviews. She wishes she could have gone with him."
January 10, 2008: "ate a chicken and lettuce sandwich for lunch."
Jauary 11, 2008: "has a beautiful baby, though she is thoroughly biased." 
January 12, 2008: "misses her husband."
January 31, 2008: "is cross-stitching Pooh."

February 3, 2008: "does not like infections like staph."

February 5, 2008: "will check the radar. And already voted this morning."

February 8, 2008: "is obsessed with food again. This is bad."

February 11, 2008: "has set her phone to vibrating butt."

[They really didn't want cell phones on in the PSHU, for one thing. Another was that out of the hospital, I needed to be available at all times, in case the hospital called.  This turned out to be very important in the end . . . in the end of Sam's fight for his life.  They did call us to come in the middle of the night. That is truly a call no one wants to ever receive.]

February 16, 2008: "is listening to her husband play Moonlight Sonata on the piano."

February 23, 2008: "will not update her status at this moment."

March 1, 2008: "is mad about saffron. . . and has to be careful not to stain the countertop."

March 3, 2008: "just wants to curl up in a ball."

March 4, 2008: "is overwhelmed with generosity."
March 7, 2008: "has a big birthday wish."

March 9, 2008: "has two birthday wishes actually."

March 13, 2008: "is thinking about the Match."

March 16, 2008: "is counting down - 11 hours."

March 17, 2008: ". . . YAY! B matched! We have to wait almost three more days for where!"

March 19, 2008: "is going to be like Anne Shirley Blythe. . .Mrs. Dr."

March 20, 2008: "will be moving to Arizona."

April 1, 2008: " is rather tired."

April 1, 2008: "is watching a Proms concert from 2000 on the Arts Channel, and thinking about Sam's lush eyelashes."

[Sam died early in the morning on April 3, 2008.   I posted on facebook that i was "just sad".  I later deleted the post.  I then posted the following six days later when I was scarfing through entire package of cookies and chips if I could get my hands on them.  Some people can't eat when going through such an ordeal.  ALL I could think about was food - where, when and how.  I am very much an emotional eater.]

April 9, 2008: "is very sad and just wants to eat."

Comments on Fetal Echoes

So . . . in another part of my life (one of my music groups), I was talking last week to a woman who is an ultrasound tech (and specifically performs fetal echocardiograms.)   When I said that with my pregnancy with Nick that I was upset that my original OB  thought we needed to wait until at least 22 weeks to do a fetal echo, but I insisted that it could be done earlier, she was surprised.   We did have it done at exactly 16 weeks, and she was surprised when I told her that, too.   She said that is really early.   I practically retorted that we could have gotten it done in Chicago at 15 weeks.  She seemed really surprised by that.   I also found out that she works for the other pediatric cardiology group in town than the one we eventually had the appointment with at 16 weeks.  I had talked with this group that she now works for, and yes, they were very reluctant to do a fetal echo earlier - they wanted to wait until 18 weeks.   I don't think MY heart could have taken another two weeks! 


All of this is rather ridiculous in that CHOP in Pennsylvania can do them as early as 12 weeks. 
http://www.chop.edu/service/cardiac-center/our-services/fetal-heart-program.html
 Even the group in Chicago that cared for our Sam could probably do them that early, although they still don't advertise that.   They still say 15 weeks. http://www.thic.com/fetalechocard.htm  Northwestern does them at 16-18 weeks gestation. http://www.nwcchd.com/cardiactesting.php#fetal That seems late - at least for HLHS.  Yes, I know they can't even really see images of some structures of the heart until even after the baby is born (why we had an echo on N after he was born), but they can most certainly tell early on if it appears the baby has two entire ventricles!  


It was such a relief to know that his heart appeared to be healthy  . . . or at the least, had nothing majorly wrong with it at that point in time!  

Ronald McDonald House outside of Hope Children's Hospital

I finally found photos online of the Ronald McDonald House that was literally just a "hole in the ground" the winter of '07-'08 when Sam lived in Hope. We could see this hold in the ground from his room. I remember looking out to see it snowing and blowing so often that winter. The early spring morning Sam died, it was sunny when the sun rose. I was finally holding my baby without any tubes or cords. He was starting to turn a little purple by the time of sunrise.

Anyway, we stayed for almost for 3.5 months at a local motel with the help of the hospital's social worker. It was what they were able to offer us as there was not a Ronald McDonald house at the time. All there was, that entire bitterly cold winter, was a hole in the ground. I can still picture it so clearly. . . often I parked on that side of the street when I came to be with Sam. I recognize the trees. . .

Here are the pictures of the place now: http://activerain.com/blogsview/1330491/ronald-mcdonald-house-in-oak-lawn-illinois

Sam's Hospital Records

We finally got copies of Sam's hospital records. They STILL did not send the genetic reports!! (Rather steamed about that, but I digress. . . )

I am reading the report of Sam's Cardiac Catherization done just two days before he died. Here is the "Final Diagnosis" from that report:

1) Double outlet right ventricle with mitral atresia, severely hypoplastic left ventricle, subaortic and aortic stenosis, coarctation of aorta and atretic right pulmonary veins.
2)Status post Norwood with Sano modification using a 6-mm Gore-Tex patch from the right ventricle to pulmonary arteries.
3) Chronic respiratory failure with ongoing hypercapnia with pCO2s at least in the 70s regardless of mode of ventilation.
4) Decreased oxygenation from combination of decreased pulmonary flow and increased pathology of the left lower lung, and nonfuctioning right lung.
5) Status post extracorporeal membrane oxygenation (ECMO) support.
6) Occluded iliac veins bilaterally and probably the distal inferior vena cava.
7) Bilateral superior vena cava with no communicating vein.
8) Excellent right ventricular function and no coarctation of aorta.

So. . .
At least #8 was excellent. . . the rest sounds pretty grim, and it was.

I just want to cry.

30 Weeks, Part 1

Thirty weeks today. N is jiggling and dancing again tonight in my right side mostly. He seems to like it over there. I can't quite tell where his head is, however.

We had an emotional time last night and today. I went through some baby things, some of which Sam wore in the hospital. A couple of things were added to the things we will keep, that we have pictures of Sam. N will not wear these items. One cute little outfit my husband does not remember Sam wearing, so he thought we could use it for N. However, I remembered Sam in the outfit. Sam wore it less than a week before he died - when my husband got to hold Sam finally. I had to look at the pictures to verify that it was this very outfit. It was. So that one, too, N will not wear.

Tomorrow is my next OB appointment. We hope to get the c-section scheduled! It's all coming up so quickly now!

Early this morning, I had a dream in which I was eating lots of food, and then drinking lots of ice water. I woke up extremely thirsty!

I will write a 30 Weeks, Part 2 post tomorrow after my appointment.

Christmas

Whew. . . it is the evening of December 26. Last year at this time, my husband and I were at the emergency department of a local hospital. The day before, Christmas Day, I had had some little spotting, but mostly major cramping. I knew that I was miscarrying, because my pregnancy with Sam had never felt like that. But, I wanted to think that the pregnancy was fine. . . until fairly intense bleeding began around lunchtime on the 26th. Still, I held onto hope, because right before heading to the hospital, I got a positive hpt. No, my hormones were just high enough to give the positive, but the pregnancy was pretty much gone.

I have been in part dreading Christmas this year, thinking that something horrible would happen with our current little one. . . well, the 26th is almost over, and N is kicking me. He reminds me regularly now, reminding me that he is here and doing fine.

Christmas was laid back and relaxed. We played our new Wii games. My husband got me Wii Fit. . . which I've been wanting. Yes, I am being careful! I am right at the beginning of the third trimester! Only about 11 or 12 more weeks. Soon the weeks will be down to single digits! Hard to believe.

On Christmas Eve, we went to the midnight service. At the end, everyone gathered outside with lit candles to sing Silent Night, which I'd also been dreading. It is the one Christmas song that makes me cry since the Christmas with Sam. I almost started crying, and then in that moment N kicked me really hard. . . and I smiled and almost burst out in a crying laugh. He wanted me to make sure I remembered he was there, too!

Nicknames

When I was first pregnant with who turned out to be Sam, I started calling the tiny being growing inside of me "Niniboof". 'Nini' (pronounced NEE-NEE, not "ninny" or NII-nee)is a Persian term for 'baby'. Boof is a childish, perhaps silly, term for rice in persian. My husband kept saying at the time very early in pregnancy that the baby wasn't much bigger than a grain of rice, and then Niniboof just popped into mind. Later into pregnancy, when we'd figured out Sam's name, we started calling him Samnini.

So, we've already decided on a nickname for this little one. "Ninibaa" is our choice this time around. Baa - for a little lamb. In Persian, a term for lamb is "baa-by-ee".

So as I am writing this, I am waiting for my backup data to load back onto my laptop (I had to completely wipe the whole drive -- it had problems.) I am also resisting the urger to run to the bathroom to throw up. All-day sickness continues!

Pediatric Chaplain who visited Sam and us and Music

I just remembered (again) how the Pediatric Chaplain came around to see us when we were in Sam's room with him. Her name is Rev. Janet, and she is the one who worked it out with hospital security that my husband would be permitted to play the lobby piano after 10 pm (and visiting hours were over). We stayed in a local hotel, across the street from the hospital (they were just in the process of building a Ronald McDonald House), and my husband missed his piano. The staff did rounds and/or staff changes at 10 pm, and parents were supposed to leave for about an hour if possible. So that is when we went down to the lobby. My husband practiced usually some classical pieces. (He's played/studied the piano since he was a kid, as did I, but he is five times better than I've ever been. . . ) I would usually read, and sometimes write an entry in one of my book blogs. My husband's piano playing has always been soothing to me, calming. When I was pregnant with Sam, his playing would calm both of us down. Sam loving his dad's piano playing in utero. . . I would sit right next to the piano so that he would hear it. (I apologize if I have previously written about this. . .)

Anyway, we both really appreciated that my husband had this opportunity to play the piano. The only regret is that Sam never got to hear his dad play the piano after he was born. Sam died just before the little portable keyboard we'd ordered arrived. We still have it. My husband will be bringing it to the hospital we have another baby someday, and play for that baby right away.

"I Want to Hold Your Hand"

Right now, this minute, I am listening to the Beatles' "I Want to Hold Your Hand". This is the first time, on purpose. . . since the morning Sam died. When I was holding Sam as he passed and after, the song that got stuck in my mind is this one. I held my Samnini in my arms and sang it to him, fondling his hands, his fingers. . . free of the wires and tubes. I wanted to sing it as his funeral, but my mom talked me out of it. We sang "You Are My Sunshine" instead, because it was the song, besides "Here Come the Sun", that I usually sang to Sam while he was alive.

I've had a Beatles' 45 of this song, with "I Saw Her Standing There" on the other side, for 11 years. . . my grandmother gave it and a few other 45s to me. My grandparents had had a bunch of 45s since the '60s. I haven't collected 45s, however, because for years I did not have have a thing to go down over the record player spindle. The record player I currently own I got at a yard sale for $4 seven years ago. . . and just notived today that in the lid, one side did not look like the other. . . and pulled. It was a 'spindle-thingy'!! Finally I could play 45s!! Why now did I notice? Was it because I got out the record player to play the Thriller album in memorial for Michael Jackson (and MJ's heyday of the 1980s - when I was a kid)? That's when I noticed. So now, I have played "I Want to Hold Your Hand" twice. It all feels cathartic.

"And when I touch you,
I feel happy inside.
It's such a feeling that my love
I can't hide, I can't hide,
I can't hide."
- The Beatles (Of course!)

PS -- I have loved the Beatles since I was little, and loved singing the Beatles to Samnini. It was all I dreamed of for years. . . having a baby and sharing the Beatles the baby.

Another TTC cycle is a bust. . . .

Okay. . . yes, I ovulated a day or two earlier this past cycle. . . but WTH?? My period started nearly three days earlier than I expected. . . after an 11-day luteal phase. My cycle was 28 days long!! My shortest ever without being on birth control! I don't understand what is happening at all. Sept-Nov 2008 - 41 days long, December - miscarriage, January - 32 days long, February 40 days long, March - 31 days long, April/May - 42 days long, May/June - 28 days long. What is up with this? This past cycle I used OPKs and we timed our babydancing correctly. . . or so we thought!

A good friend of mine who is a nurse suggests that it is time to go see my doctor and get tests. I think I am going to call. I hate calling to make appointments. I wish they would offer online appointment making. . .

-----
From one of my favorite musicals, and makes me think of my little Samnini. . .

"Come to my garden,
Nestled in the hills.
There I'll keep you safe beside me.

Come to my garden.
Rest there in my arms.
There I'll see you
Safely grown and on your way.

Stay there in the garden,
Where love grows free and wild.
Come to my garden.
Come, sweet child."
- From "The Secret Garden" (the musical)

One week into new cycle

Okay, I am in my fifth cycle since my miscarriage. After a 42 day cycle, I am hoping that this one will be a bit shorter. As well, I purchased OPKs, which I'll wait to start for at least another six days or so. Otherwise, I feel that I have been worrying TOO MUCH about getting pregnant. I know that it will happen when I am not paying so much attention. I just don't know how to distract myself from thinking about it all the time. I am trying to get back into some moderate exercise, which is helping a bit.

I wrote a poem last night. It's not good, and it has not gone through rigorous editing. I retain all rights to it. It expresses what both my husband and me have been feeling: It's not fair.



It’s not fair it’s not fair it’s not fair it’s not fair
It’s not fair it’s not fair it’s not. . . .
What do I do now?
I want a healthy baby here in my arms. It seems
Like everyone else has one. Or two. Or three.
It’s not fair it’s not fair . . . always running
Through my mind.
It’s not fair. My son, my Sam should be here
Toddling ing around getting into things talking and
I’d be the only one who’d understand him at
At 18 months old . . . it’s not fair. . . he should be
Learning to swim and learning to run, looking at books
And begging to be read to. . . it’s not fair. . . he should be
Here
With us
Playing toddler games with his mommy and daddy.
It’s not fair it’s not fair it’s not fair its not fair
I should be starting a third trimester to welcome
Sam’s baby sibling into the world soon.
It’s not fair. . . miscarriage ended that dream. We miss
You dream baby. It’s not fair. . . it’s not fair that we watch
Friends and family bring new babies, healthy babies into
The world and we don’t get to keep one. . . please
Let us have a baby that we can bring home and raise.
We’re loving, we’re ready. . .
It’s just NOT FAIR!!!!!!!!!!!!!!!!!!!

What helped/didn't help in our experience with Sam

This is a post I just made in response to a question on the MISS forum about what helped and didn't help when our baby died:

"In my case, my Sam was not born still (although we'd been told that might happen because of his heart, etc - that wasn't the case though. . . he thrived in utero), but here are some of my thoughts:

1) I loved when the hospital put his footprints on a hat for me right away when he was born.

2) When Sam died, I loved that his nurses offerred to make molds of his hands. They only had enough for his hands and not his feet, but because we had his footprints, I was surprisingly okay with that. They also prepared a memory box for us. . . in which they put a lock of Sam's hair (he had lots of it!), and the last little outfit he wore.

3) While Sam was alive, he never got to leave the hospital. Because of the vent, the nurses didn't like to dress him over his head. . . we found a kimono style side close outfit and were very proud of ourselves. This was put on him regularly. . . and then one day he was sent for a procedure, and the nurse didn't undress him before taking him down. They CUT off the outfit!! It was in shreds. When I heard that, I went ballistic! Sam's doctor yelled at me for crying hysterically about this. I had to try to explain how symbollic this particular thing was. I already intrinsically knew he were never be coming home, that I would never get to dress him in as many cute outfits as I wanted to. It still makes me cry to think of this particular event. I know that I "should be happy" that I got that time with Sam alive, but even still . . .

4) When Sam died, I did not like or even really appreciate that people sent us "dead flowers" (cut/arranged). I did appreciate those who got the message, and gave us live/living plants (our favorite was the Peace Plant). We still have these, and I do my best to keep them alive, too.

5) What was not helpful was looking for a in-person support group. We tried one, where my husband and I were the only ones there. The second one that we were referred to was almost all parents of babies born still or babies who died very shortly after birth. Frankly, people were jealous we got to hold Sam alive. Then we moved to another state. The only in-person support groups I've found locally are either pregnancy loss/born still groups, or Compassionate Friends, and when I talked to one of the leaders, she said her child was the youngest death in the group at 2+ years old. She said we could come, but we probably wouldn't fit in. This is all why MISS online IS my support group at this time. It's been very upsetting that we just don't "fit in" anywhere! Very frustrating. . .

6) Insurance issues. . . we "pre-registered" at the hospital I had Sam in, and we gave them both my insurance info and my husband's secondary insurance info. When I went in to have Sam, they said they didn't have any of our information, and refused to take my husband's at that point. It became a huge mess in the long run. . . which we were still dealing with a little as a month ago (with a couple of bills, still) . . . one year after Sam died. We THINK it's finally all taken care, fingers crossed!

7) Sam's surgeon completely ignored us right after Sam died, but we were still on the unit, and he was there on rounds. Most of the other doctors and some of the nurses came in to express their condolences, etc, but the surgeon would not even look our way. We noticed. My husband was very angry about this, actually.


I probably have more thoughts. . . but these are the major things for now. "

Marley & Me (Something I posted on a forum earlier. . .)

I just posted the following as a part of a thread on Marley & Me . . .

I have quite a connection to Marley and Me. I was listened to the audio book on CD of the book Marley and Me back in August 2007 (in my car on the way to and from work), started listening to it a few days before our 20 week ultrasound with Sam. Up until then, my pregnancy had been wonderful. I even listened to the part about their first pregnancy. . . and I thought, "Whew, we're past that point. I can feel our baby move." I was excited about our 20 week ultrasound, and that's when Sam's heart was discovered. I finished listening to Marley and Me after that day, and just sobbed again when Marley died (because I have taken a much loved dog in to be put to sleep, which is pretty difficult to handle, too).

We went to see the movie this past Christmas day when it came out. I insisted (my husband wasn't sure he'd like it; he did), and I hoped that they would not cut out her first baby loss. They didn't. What they did cut out was the difficulty of her next two pregnancies, with bed rest, etc. I was sobbing through most of the movie, and I knew I would even weeks before when I learned it was coming out. Also it was hard because I was spotting quite a bit. . . . . we should have probably gone to the ER that afternoon instead of the movie, instead of me stubbornly clinging to the idea that I was just going to have a pregnancy with spotting and more complications.

I loved the movie, though. The "commercials" for the movie don't do it justice. I feel superstitious though, in TTC again, about watching it again right now personally. Later, I do indeed want to see it again.

A video of Sam from Jan 10, 2008, when he looked the most well, in honor of the one-year anniversary of his death

Sam passed away last year on April 3, 2008 at about 3:OO am, and I wanted to post a video of him. Here it is.

I recorded this because it was one of the first times Sam was awake and alert, and relatively un-drugged. His dad was also out of town for interviews, and I posted this privately online for him to enjoy. The person talking in the video is Sam's grandpa who was visiting. This is my favorite video clip of Sam.

(Please do not use this video without my permission for any means.)

Time, Waiting for the Anniversary of Sam's Death (April 3, 2008)

Here is what I posted to an HLHS Loss group earlier tonight:

The first anniversary of my Sam's death is just hours away. It will be at 3 am central time. For weeks now, I've told myself I am not going to fall in to the "time" trap . . . that I wasn't going to mark every minute as this day approched. But, I have been, and I think I've been marking time with events all along. (I've even started thinking on the two year mark now - I conceived Sam two years ago last week, etc.) So, a day or two ago, I remember thinking, it was one year ago that had the catheterization through his liver that made him have the slow internal bleedout. Last night (April 1st), it was the last time we gave him his bed bath (in the hospital, since he never left). Today (April 2), I keep thinking, okay, it was this time last year that we met with the geneticist at 10 am. It was at 2 pm last year that I had made it to work (I had gone back part-time after it looked like Sam would not be leaving the hospital anytime soon, after my c-section recovery/7weeks of maternity leave), but I didn't want to be there. I had a "feeling", "intuition", that something was going to happen, and I kept checking to make sure my cell phone had power and carried it on my person at all times while at work because I felt like something was going to happen. I should have listened to my intuiation and left work and spent the time with my little Sam. At this exact moment last year (in Central time), I had left work, and arrived back at the hospital, where Sam's numbers were getting a little scary, and they had figured out that he needed blood, so he was getting infused, but they still hadn't found the leak yet.

So, I keep thinking this way, replaying everything. I can't stop myself.

Some thoughts

1) I am 12 dpo today. My bbt went up rather than down today. This is an interesting sign, knock-0n-wood, because usually my bbt starts dropping on 12 dpo if I am going to get my period. My breasts felt like they were being attacked yesterday for hours on end. I do get breast and nipple soreness during pms, but NEVER this bad. I have also been more tired than normal. (This is exactly what happened at the beginning of pregnancy with Sam. Maybe it's wishful thinking, too.)

2) We are still getting bills that neither of Sam's insurance policies are willing to pay for. My/his primary insurance paid most his bills, but suddenly more than a year later, his secondary health insurance (through my husband's job) has decided that they will not cover some of it even though Sam's policy went into effect the day he was born. Now they are claiming that it didn't go into effect until Sam was 6 weeks old! So. . . this is an ongoing issue that I thought was behind us!

3) Almost two years ago, near the beginning of pregnancy with Sam, before we knew of any of his problems, I talked with two close friends who tried to convince me not to find out the sex of the baby until he (or she) was born. Even then I knew I wanted to find out the sex of the baby via ultrasound. This was the thing that was top-most in my mind. (This is probably the case for many pregnant mothers who have "pregnancy innocence".) I even noted this conversation with friends in my (hand-written, private) journal. My reasoning was the I 'needed to know', that it would help me bond with the baby. They argued that there is no greater surprise than finding out when the baby comes out.

What I learned later that year, and realized again today, that the sex of a baby can be a surprise, but it really is NOT the biggest surprise. No, the biggest, and best, surprise is/would be to find our your baby is completely healthy. This the most important surprise.

Samyar's Story, Part 3

Sam also had a 2-vessel cord, which apparently made some of the medical professionals think that Sam might be born early or might even be born still. I never believed that, and neither did Sam. At 20 weeks along, he was measured at about 8 days "behind" in growth. I think they were wrong even then, because at 38 weeks, they measured him at 6 lbs 10 oz, but when he was born a mere four days later, he was 7 lbs 11 oz. They were off by a full pound. Couldn't they have been wrong about his size at 20 weeks? Also, two weeks off is apparently a normal variation, but they tried to panic us, I think.

I apologize if this story is not in order, linear.

Last night, I was remembering how much he liked to suck. He sucked on the vent tube. When he was extubated for those brief, hard five days in January 2008, tried valiantly to suck on a pacifier. We have have one picture of him with the pacifier, but he looks so exhausted from the effort that I am not sure that I really want to post it here. It is hard to look at, but I am so glad we have it. I may try to photshop the pacifier into another picture, and take away the vent tubes.

He tried to hard to keep breathing on his own, but he wasn't getting enough oxygen exchange. It turns out it was most likely because of those missing veins that didn't go back to his heart from his right lung. They didn't find that for another couple of weeks when they did the catheterization. They waited to do the catherization, because they discovered that Sam had developed an infection. So while they started him on heavy-duty antibiotics, they also started feeding him again, because he lost weight because they didn't feed him food other than IV nutrition while he was off the vent.

I just keep wishing we could go back, and have everything turn out different. That maybe Sam would have still had HLHS, but maybe his lungs and veins would have been perfect, that he would have been able to get off the vent, and then we would have been taking him home just a few weeks later. I know that there would have been the danger of him developing problems and passing away at anytime, but to have been denied the joy of bringing him home, of being able to lie down with him on our bed, his mommy and daddy curling around him, admiring his big eyes and lucious long eyeslashes in the leisure of our own home.

This time last year, in February 2008, I went back to work part-time. I was cleared by my OB after my emergency c-section. I was at the hospital in the morning, went to work in the afternoon, and then back to the hospital at night. After it looked like we had no idea when Sam would get to come home, I was extremely depressed and angry. It did me a "world of good" to go back to work. It gave me other things to think abut and concentrate on. My workplace, where I had worked for four years full-time, was very supportive about me coming back part-time. They were all mostly very gentle with me and didn't push me too much. I proudly showed off pictures of Sam, and everyone was very positive. It proved to be incredibly positive to go back to work. They also allowed me to carry my cell phone in my pocket at all times. I never did that before, and after Sam passed, I no longer did so, but while he was in the hospital, I told the nurses that they could call me on my cell phone at any time. I kept it on vibrate - so it would not cause a public nuisance, but I could feel it.