Monday, April 30, 2012

Update on "Squirmet"

I know I promised an update sooner, but things have been crazy around here.  We've travelled to Baltimore more times than I care to remember in the past 2 weeks and will travel there at least once more this week.  But it will all be worth it in the end.

First of all, in case you can't tell from the title, baby boy has a new nickname.  Daddy thought it up after listening to him squirm while on the fetal monitors.  He's always been known as Froggy Pie (looooooong story, but Addie's nickname was Maggie Pie so it makes sense in a way), but he was so squirmy that P decided to start calling him Squirmy or Squirmet (like Kermie or Kermit).  So, for now, until he is born, he will be known as Squirmy.  And, trust me when I say he lives up to that name.

So far, we've have 2 IUTs (intrauterine blood transfusions) and the 3rd is scheduled for this Friday.  He seems to tolerate the procedures well.  The last transfusion he had to be sedated because he was trying to "help" the doctors.  He is extremely active, and in such confined spaces, he makes it very difficult to get the needle into the umbilical cord.  So, Squirmy has had his first shot and hasn't even been born yet.

Each IUT takes approximately 2 hours.  Depending on how easily the doctors can get and stay in the cord, it could take less time.  But, considering he likes to kick and pull on his cord, it has been difficult.  After the transfusion, I am monitored for contractions and, if he has been sedated, I have to stay in the hospital until he beings to wake up from sedation.  He's only been sedated once, but I'm sure it will happen again.  I did have contractions after the second transfusion but I think that was mainly from being dehydrated.  IV fluids stopped them, thankfully.

I have to's scary as hell knowing a needle is going in to my tummy, but it's so interesting to watch.  There's 2 doctors in the OR, one is guiding the other with an ultrasound machine.  I'm lucky enough to be able to see the screen and see everything they are doing.  Plus, I can't help but giggle when I see a little hand or foot float by.  I know it frustrates the doctors but they have a good sense of humor about it. 

Anyway, we went for a check up today, his blood levels have dropped a bit, but not so bad that an immediate transfusion was needed.  He will get some more blood on Friday.  So far it's going well.  I'm just hoping we can keep it up for the next 8-9 weeks. 

Here's some of the most recent u/s pics:

One of my first 3D pics...I'm sucking on my fingers

Still love waving to the camera

Profile at 25 weeks, sucking on my fingers

Yup, still a boy!

Smiling for the camera (26 weeks)

Sunday, April 29, 2012

Never again will life be taken for granted...

It breaks my heart to know that women and families all over the world experience loss every day.  What makes it worse, though, is to know a family has to go through loss again and again.  Today my heart aches for the Rasmussen family and the loss of their precious rainbow Evelynn.  Thinking of you all...

Another 27th has come and gone...

Life will never be the same.  That piece of my heart will always be missing...

Sunday, April 22, 2012

A long overdue update

So, it's been a very long time since I've posted an update about our little man.  Lots of things have been happening recently, so it probably time.

First of all, I'm 25 weeks 1 day today.  Hard to believe that, with any luck, he will be here in 3 months.  Little man is currently measuring about 1 1/2 weeks ahead and, at last measurement is 1 lb 14 oz.  Right on track to be a big boy.

We've been having MCA doppler scans every 2 weeks since about 16 or 17 weeks.  These scans measure the blood flow in the middle cerebral artery.  It's common in iso pregnancies that babies become anemic, though some not nearly as severe as others.  Usually, with a combination of antibodies like I have, the chances of a baby becoming moderate to severely anemic happens more often than not.  We were hoping that we would get lucky.  Unfortunately, our luck ran out.  Prior to the scan we had 10 days ago, little man had been consistently in the normal range or on the low end of the mild anemia category.  Our scan on the 13th however, showed a measurement on the low end of the moderate to severe range.  This was the first time we had a reading this high.  My MFM decided to have us come back 4 days later, which is a normal length of time in cases like mine.  So, on Tuesday, we were back in the office.  Only, this time, all of the measurements were in the moderate to severe anemia range.  Things started moving fast...faster than I thought possible.  Dr M, who had always said she wasn't comfortable with performing intrauterine blood transfusions because she had done so few in her career, started researching where to send us.  While waiting, her nurse gives me a shot of steroids to help the baby's lungs mature "just in case."  After what seems like forever, Dr M comes back and says that she is sending us to the Center for Advanced Fetal Care at the University of Maryland Medical Center in Baltimore.  Our appointment is Thursday.  In the mean time, we are to come back to see her tomorrow for the second steroid shot and another look at our little guy before we get shipped off.

Fast forward to Thursday.  After a 2 hour drive to Baltimore, we arrive at the center which is based right inside the hospital.  We have an hour long ultrasound, including a full anatomy scan and MCA.  The MCA results are slightly better, which we knew was a possibility.  The MCAs aren't perfect and often fluctuate, depending on how well the baby cooperates during the test.  Good news is, he's STILL a boy and once again, wasn't shy about showing it.  He still continues to measure ahead of his gestational age, and, best of all, he's not showing signs of hydrops.  Hydrops is often a side effect of anemia; it's fluid that builds up under the skin, usually signifying heart failure.  Dr H, director for the Center comes in to take a look.  He looks at the MCAs and does some searching of his own with the ultrasound machine.  He then explains that, although not immediate, intrauterine blood transfusions are a must.  He is concerned due to the gestational age of the baby.  Each transfusion carries a risk of early delivery for several reasons.  And, since the MCAs aren't an exact measurement, there's no way to determine just how urgent the situation is.  He then explains that a cordocentesis can be done to provide a definitive answer.  The cordocentesis is much like an amnio.  A needle is inserted into the uterus and, under the direction of an ultrasound, is guided into the umbilical cord.  Once in the cord, a small sample of fetal blood is drawn.  The blood count is tested from the sample.  After a discussion of the risks (contractions, ruptured membranes, emergency csection, etc) a decision was made to do the cordocentesis the same day.  This would allow Dr H to make a decision on when the first transfusion would need to take place.  Due to the risks, I chose to have the procedure done in the
OR.  Though the procedure could be done in the office, if something went wrong and a section was needed, the baby would be our faster if we were already in the OR.  Unfortunately, L&D was very busy that day and my procedure got bumped several times for emergencies.  Finally, after several long hours, I was prepped and ready.  What I though would be a simple procedure definitely was not.  I guess I didn't realized just how hard it would be to get that needle in to the the fact that the baby was very active didn't help.  But eventually the docs got the sample they needed.  I was taken back to the L&D for observation (had to be hooked up to monitors to make sure I wasn't having contractions) and to await the results.  Dr H comes in to tell us that the baby's blood count is very low, 6.3 in fact.  So a transfusion is scheduled for Monday, April 23.  He also says that we will probably have to do 5-6 over the next 10 weeks.  The second one will be a week after the first and then subsequent transfusions will occur every 2-3 weeks after until the baby can be safely delivered.

As I said before, transfusions carry risks and quite a few.  The worst of which, other than the obvious, is early delivery.  To say I'm not scared would be a ginormous lie.  But, I know that, at this point, he is technically viable and can live outside the womb.  Yes, I know the chances of his survival wouldn't be great, but I also know the risks are low.  Over 95% of transfusions are successful, without any side effects.

Honestly, it comes down to this...when I first found out I was pregnant, I remember telling myself that I would do anything to make sure I bring home a healthy baby.  It sounds selfish, I know, but I want to give my little guy the best chance of survival I can.  The fact that it's my body attacking him makes me want to do whatever I can to help him.  I know there may come a point where I can't do anymore, but I'm not thinking about that right now.  We just need to get through this one day at a time.

So, that's it for now.  Tomorrow morning we head off once again to the UMD Medical Center for our first of many transfusions.  Hopefully sleep doesn't elude me tonight.  I will try to post new sono pics of him soon too!

Thursday, April 12, 2012

Like a ton of bricks....

***I've been trying to write this for a few weeks now, I just haven't been able to finish until today. ***

Hiya baby girl,
     So, your 19 month birthday passed...and for some reason it hit me like a ton of bricks.  I have no idea why, either.  Even your 18 month birthday didn't hit me this hard.  I felt like I was fighting tears all day and that was hard.  Especially when I had to conduct an interview in the afternoon.  I wish I knew why this birthday hit me so hard.  I wonder if it has anything to do with your little brother.  The farther along I get in this pregnancy with him, the more I compare this pregnancy with yours.  It's so makes me wonder if there were signs I just didn't see.  Being a first time mom, I had no comparison.  I read all the books, searched the internet, just to make sure what I experienced was normal.  The biggest sign is the fact that he is so much more active than you ever were.  Was this a sign?  Was there something wrong, even this early?  I just don't know anymore.  Sometimes I wonder if you were ever meant to be.  Its hard not to wonder.  And it certainly doesn't make missing you any easier.
     I miss you, that will never change.  I don't regret having you; I regret never getting to know you.  I regret not saying more when you stopped moving around so much.  This month has been full of regret.  I know my hormones are crazy right now, but I don't think that's the reason I'm feeling this way.  I just miss's as simple as you little one.

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