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!  

Things N Says

My little smarty-pants 23 month old talks up a storm, so to speak.  Only we don't always understand him.  I might recognize one word out of every seven, particularly if he is very excited.  However, the other day, he found a cup, held it up to me, and said rather emphatically, "I need some milk!"  Usually, he speaks in one or two work phrases, so this was quite impressive.   


It is also fun when he "reads" Goodnight, Moon to himself or, now, to me.   He says lines such as "Hello moon" and "All gone, moon."    It's very sweet to listen to.  He really gets into it.  


He says "thank you" frequently.   Next we need to work on adding "please" to his vocabulary!

Waiting another couple of months. . .

As much as I'd like to be pregnant again, we are waiting another couple of months.  There are some factors to this decision that I will not completely go into right now, but a less personal reason is that I am running my very first 5k race in a couple of weeks.  This is an amazing thing for me.  My modest goal is to finish it, and maybe not come in last.   I can run (with some periods of walking) 5k in about 45 minutes.   Today I hardly did a mile because allergy congestion (coupled with dust in the air) prevented it.  It is a hope that this will not prove to be an issue for me on the morning of the race.  


The race will take place two days after N's second birthday! 

Cycles

In thinking about getting ready to conceive again (hopefully our final and successful attempt to complete our family. . . there is another child waiting for us, I know), I thought I would post about my cycles as of late.  


When I have been somewhat regular in terms of timing of my cycles, they have been 31 to 32 days long (with some variations, usually longer).  In August, I got my period several days ahead of when I expected to get my period.  I did the math, and I was exactly 28 days - four weeks - after my previous period!    Wow!  I have never been that "normal" while not on birth control.    


The thought that passed through my mind was that it might be a fluke.  Now, I am not so sure about that.  August, September, October, November, December and now January, I have gotten my period every 28 or 29 days.  Really, I have never been so regular for so long! 


I am trying not to get my hopes up, but this will make it somewhat easier if we try to start trying to conceive again in the next few months.  

MTHFR Mutation?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2908276/ I have not been tested, but I wonder if in part there is a connection . . . with N, I was taking lots of extra folic acid before he was even conceived. Should I be tested before we try again?

N at 19 months

Today N is 19 months old. In only five more months, we will be celebrating his 2nd birthday. It is hard to imagine.

Among his favorite foods is plain greek yogurt. He loves it and begs for more. Last week, his dad gave him a Cheeto. N discovered that he also loves processed foods with MSG and and other dubious ingredients.

As N grows older, I miss his older brother even more, if possible. Sam would be almost four years old now, and N could have been expending his incredible amounts of energy chasing after his big brother.

We participated in the Wave of Light again last night. I will post a photo of our candles soon . . . I have so much to write tonight, but my living little second son is constantly hungry, and is demanding more "num-num!!"