Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, August 31, 2011


We had our Perinatologist appointment today.  The ultrasound had the same measurements as this past weekend at the hospital - no surprise since the visits were only a few days apart.  Head circumference still pushing 41 cm and BPD still 11+cm.  To clarify for those who may not be familiar with head circumference measurements, etc.. the cm does not equal weeks of gestation.  An average newborn has a 34cm head -- so with 41cm, Meagan's ultrasound isn't even registering gestational age anymore because it's literally "off the charts." 
Her abdomen is still small - now measuring about a week and a half behind. I'm not "too" concerned since her limbs are still right on time, however, it is a little concern to watch.  I want to make sure as the weeks go on that she's not developing an IUGR issue in her body on top of the fluid increasing in her head. 

Meagan was pretty quiet in the ultrasound today.  Her heartrate looked good, cord blood flow looked good, etc.. but she wasn't very wiggly.  She gave one or two kicks, but other than that stayed very quiet.  This doesn't 'worry' me, per say, but, it does catch my attention.  She is normally a nutty baby, so when I see her so quiet through a 25 minute ultrasound, I do take note.

A good thing was we saw her chest/lungs moving  A LOT.  Everytime they scanned her body, you could see her diaphragm moving in and out, up and down.  These are GREAT signs for her 'practice breathing'... This is important because if we are talking about an earlier delivery, we want her lungs to be as mature as possible.

Now for the frustration: the doctor thinking he knows what is best because he's going by 'standard procedure'.. instead of listening to us and trying to discuss a compromise.  The information he goes by is basically: measure the head, measure the remaining mantle tissue (remaining brain matter), and if she seems 'ok', press forward to a 38+ week delivery.
I take ALL that information to heart - however - I also factor in things like: personal stories from several other Hydro families  (which are invaluable since doctors don't know much about the condition's progression or prognosis), how other Hydro babies are doing and what their measurements and gestational ages were at delivery, what we have reserached about Hydrocephalus, what we have researched about enormous head size and developmental delays, how I'm feeling, my contractions, my 'gut' feeling. 
These all need to come in to play when talking about Meagan's delivery. 

We went in with a few basic goals:
1. Talk about steroid shots - whether a planned earlier delivery or not, I'm feeling very "at the end" in my body and in case my water breaks or I do go into unplanned labor, I want her lungs to have as much help as possible.
2. Talk about earlier delivery. Nothing crazy - nothing irresponsible.. but weighing all risk factors, and all risks of her condition, moving up delivery 1-2 weeks so we can get that shunt in sooner than later.
3. Talk about my on and off contractions I have everyday - coupled with my history of fast labors. The last thing I want is to truly go into labor, her have no shots, and also be completely scrambling to set up everything else, when we could possibly avoid all that by planning out a slightly earlier delivery.

We started our talk with the doctor by mentioning the steroid shots. The doctor was very adament about not doing so.  When we asked why, he said because before 38 weeks the baby just isn't ready.  Ok, I get that.  If someone is just "tired" of being pregnant, that's silly - don't ask for steroids to help the lungs along, and don't deliver before 38 weeks.  However, we're talking about our daughter's brain here. Her head. All we were asking is to prep her lungs for a 'just in case' scenerio (which is NO harm to her or me), and to push up her date a week or two - not asking for some crazy early delivery.
Considering her Hydro condition, when she is delivered honestly takes a back seat in our opinion. Yes, we want her to do ok in surgery. Yes, we want her to have mature lungs. BUT - it's really a toss up in Hydro.  Do we just wait it out and chance her head getting to an astronomical measurement? Do we push for earlier and have her chance more breathing or eating issues? To be quite blunt, breathing and eating issues are pretty much at the back of my mind when I think about her mental development.  It's that fine line of waiting.. but not TOO long where we set her back another 3 steps because we just let her brain sit in a ton of pressure for 2 or 3 extra weeks. And this is why we thought a responsible compromise would be steroid shots and testing for lung maturity.

We then brought up this very issue: doing steroids, and then testing her lung maturity with amniocentisis. This way, we didnt' deliver before her lungs were mature... but also just didn't 'wait it out' unprepared if she came earlier. If her lungs showed ready before 38 weeks with one of the amnios, then we asked about delivering at that point to save her head from going through anymore growth.  The doctor was still negative.  He talked about Amnio having a risk of starting contractions, and if she wasn't ready, we'd be delivering her anyway if it put me into labor.  There was no reason, in his opinion, to check for lung maturity.  Really?? How about so that shunt can get in her head 3 days, 7 days, 2 weeks earlier? That DOES make a difference!

At this point I became very frustrated. Sooo, let me get this straight.  For about 7 weeks, from 21 weeks to 28 weeks, we got hit with the termination question EVERY time.  Yet now you, Mr. Doctor, are going to actually give a care about delivering at 36 weeks vs 38 weeks because it could "endanger her health."  And let me ask another thing - at 21 AND 23 weeks, you heavily pushed us to have an Amnio.. because, and I quote "there could be something genetically wrong with her."  When I asked him then about the risk of contractions/inducing labor with an amnio at that time, he said literally "oh it's such a small risk and it's important to know her genetic make-up." (which was another way of them saying "...because if there is a genetic problem you can still terminate.")  Yet, now, us asking for her to have an Amnio at 35 WEEKS pregnant to check lung maturity is somehow "too risky because amnios can cause contractions."   Way to give conflicting advice -- not to mention his earlier advice DID in fact risk her life because it was early on before viability. If I were to randomly go into labor at 35 weeks from the amnio, it's not as big of a risk factor as if I had at 22 weeks. He made absolutely NO sense in his reasoning. (probably because those of us that keep these babies are such a PAIN).

Brian could tell I was getting very heated and flustered with the doctor's nonsensical answers.  Normally I'm the one who has to push for stuff - fight for what we know is right... from medical opinions, down to silly incorrect food orders and the like. I'm the strong one. I'm the "pusher."  But I was done - I was so spun up over his unwillingness to even LISTEN or work with us on this, that I was too upset.

At this point, I must say, I was VERY proud of Brian.  Mr. "Laid back, take in the information" man (which is great because we balance each other out)... suddenly turned into a grilling prosecutor.  Brian sat forward and the conversation went something like this:

Brian: "Ok, so if we get the steroid shots, there is no harm done.. even if we DO go to 38 weeks, correct?"
Dr: "Yes"
Brian: "Ok, so we get the shots. And if we do get the shots, why not go ahead and do an amnio a few weeks from now to see if her lungs are ready. That's logical, isn't it? Because the main concern, for BOTH of us, is her lung maturity before delivery?"
Dr. "Yes"
Brian: "Ok, so if your amnio results show her lungs are ready at 36 weeks, then there is no reason to wait another 2 weeks, to 38 weeks, as it would only result in her head growing that much larger; therefore making surgery to my wife riskier and more involved, and making Meagan's development possibly 10 times worse?"
Dr: "Well, we would still want to wait until 38 weeks to deliver..."
Brian: "But if the issue is lung maturity,as you have said, and the amnio results show her lungs are ready, then if that time is at 36 weeks, we should press forward with delivery as then the focus shifts to getting her out to start relieving that fluid and saving brain matter."
Dr:"Uh... "
Brian: "So we'll go ahead with the amnio at 35 weeks."
Dr: "Uh, yes, that will be ok.  We'll do the amnio after your next visit."
Brian: "...and if the amnio results show her lungs are ready... we'll..."
Dr: "talk about delivery that next week?"
Brian: "Excellent"

LOL ... I had to laugh a little, as mad as I was.. because he basically had the doctor talking in circles... and eventually, whether out of confusion, or out of the doctor himself realizing he was making NO sense, he agreed to at least re-visit the idea when I go back for my next check up.

Thank you Brian for sticking up for us and for Meagan and what's best for her. 

We made our way to the nurse's station, I got my steroid shot, and will get my second tomorrow after my OB appointment.

I go back in two weeks, at which time I will be 35 weeks 5 days ... I'm praying Meagan keeps doing well, and I'm praying she shows everyone, including that doctor, that her lungs are mature enough at that time to deliver.  The poor kid already has enough going on with her head size -- why a doctor would initially refuse steroids, refuse lung maturity amnios, and let her "sit" for FIVE AND A HALF more weeks is rediculous.  If we can help her along, and test for lung maturity, so we can avoid delivering her with an adult sized head... who wouldn't want to do that? If the goal here is truly to help her the best we can, sometimes that means weighing one risk against another - and as her parents, we put her brain first.  To the doctor, we're just "that couple" that kept "that baby" and there is no advocacy there on Meagan's behalf - which is the very person we ALL should be focused. on.

Quite a frustrating day, but, thanks to pushing back, and for a husband who took over when I was too tired to go any more, it seems we at least got part of our goals accomplished.  Parents out there - fight for your kids. I have a great respect for the medical field and doctors - without a lot of what they do, Meagan wouldn't even have a chance.. but.. they don't always  know best.  You have to trust your instincts based on facts and information from other families who have lived the same thing to truly get what is best for your child, especially in conditions like Hydro. 
Meagan - we'll keep fighting for what is absolute best for YOU... don't you worry.

Sunday, August 28, 2011

Nervewracking night #2

Yesterday, I rested as much as I could.  I tried to take it easy after the events of the day prior, but I still didn't feel comfortable about Meagan.  She wasn't moving much - and normally, she is an absolutely NUTTY baby.  Finally yesterday evening, I ate dinner and waited. Still no movement. After the kids went to bed, I started to get worried. So I had my infamous Acai-Blueberry popsicles and some ice water.  Normally within minutes of having these popsicles, she is absolutely crazy inside. Dancing, kicking, spinning - whatever she can do, she does.

About 30 minutes went by and no movement. I felt uneasy so I had some more ice water and went upstairs to lay down on my side.  Another 30 minutes and I felt her once - but that was it.  I debated back and forth about whether I should call in or not - but finally decided I'd rather feel stupid 20 times over, especially at this point in the pregnancy, than ever delay and then regret not getting her checked later.

The doctor said to go ahead and come in for some more monitoring..etc.  I got to the hospital around 11:40pm.  The doctor on call from our practice met me at Triage and got me hooked up to the monitors.  It took her FOREVER .. again... to find Meagan's heartbeat. Nervewracking! Finally they found her but she was, again, in a strange position and it was very faint.  They had to press the monitor in pretty hard to get the reading to stay steady.  It was in the 120s. They told me every time I felt her move to record it on the monitor and so the waiting began.  After the first 30 minutes or so, I did feel her give me one little nudge, so I pressed the monitor cord.  I was having tightening in my stomach, but, nothing major, and her heartrate was still in the 120s but steady.

The doctor came back after a while and said that she looked good on the monitors but she wanted to go ahead and check me because of the tightening, and also have an ultrasound done so Meagan could have a BPP to see how she was doing inside.  The nurse finally came to wheel me down to the ultrasound room and the tech did a full profile of Meagan - all her measurements, brain measurements, head circumference, abdominal circumference, heart function, lung function, etc..

I went back up to triage afterwards and got the results.  The good news was that Meagan got an 8/8 on her BPP.  Basically that tells them she's doing ok inside for now - it has a 48 hour "guarantee" of reassurance... in other words, that "should" tell me she'll be ok for at least another 1-2 days until I have a repeat test.  The "surprising news" was how much Meagan has grown in just two weeks.

Two weeks ago, she was measuring on time everywhere in her body, except her head, of course.  And her head circumference was 35 weeks 5 days... so about 4 1/2 weeks ahead of her body at the time.  Last night, at 33 weeks, only two weeks since her last appointment, her abdomen is now measuring over a week behind, and her head circumference has jumped to 41 cm.  That is well over the head size of a 40 week full term baby.  Just to give you a reference point, an average 40 week full term newborn will have a head circumference of about 34.4cm....and here we are with her already at 41cm.  Her BPD (ear to ear measurement) has also jumped.  It was just under 9cm 2 weeks ago.  Now it is 11.7cm.  This measurement is important because if it gets much bigger, it could affect me having a "normal" c-section.  The incision may have to be larger or from a different angle to get her out if she goes much past 12cm.
No wonder I'm having on and off contractions. No wonder her movements have slowed some.  No wonder the two of us just seem "off" and uncomfortable.

The doctor also checked me, and I'm 1cm dilated already. I know it's a small number, however, I'm normally "that" woman that goes to the 38 or 39 week appointment hoping for some sort of progress or "sign" labor is coming and I'm usually not dilated at ALL by then - or maybe just a tiny bit.  So to be 1cm at 33 weeks pregnant is definitely different for me... but again, not surprising knowing all Meagan's new measurements..etc.

I am going to have to call our Specialist in the morning.  He wasn't even going to see me until almost 2 weeks from now - but with how I'm feeling, how my contractions come and go, and Meagan's jump in growth, I feel they need to know what went on this weekend.  I simply cannot imagine with her head already at 41 cm going another 5 1/2 WEEKS until they deliver her!  And with all my loose ends (4 kids to be cared for, husband's work being quite a distance from the house..etc.), I really don't want to just wait it out and then have my contractions pick up... or have my water break because the pressure becomes too much.  Also, if they do have to take her a little earlier, I don't want to go into that unprepared.  If they think earlier will be better at this point, I definitely want to have steroid shots set up so we can help her lungs along as much as possible..etc. 
Quite an interesting and eventful weekend. I will say, I trust that mommy "gut" feeling like no other.  I just felt she needed a re-check, and, I was right.  Before I left for the hospital, I shot a quick prayer up to St. Gianna and said "Please, if Meagan is uncomfortable give me something - a sign, more contractions, new measurements.. something so I can talk to the doctors about doing what is best for Meagan and getting her here earlier."   And her ultrasound definitely gave me that information.  Now time to see what the Peri says tomorrow and go from there. 

Friday, August 26, 2011

Ok...revert to 'worry mode'

Last night I felt really weird/shaky/not myself.. thought I was just tired so I went to bed. I woke up today feeling the same.  It's very hard to explain.. but it's not dizziness like in early pregnancy.. but not jittery... it's just a very strange feeling I had.... so I called.. better safe than sorry with Meagan especially at 33 weeks. They told me to go right to Triage to be monitored at the hospital.   I checked in, got on the monitors.. and they could NOT find Meagan's heartbeat. She was moving like crazy, but they couldn't get a good rate on her. Finally they were able to, but it literally took 4-5 nurses to come in minutes after each other to get her on the monitor well enough. Every time they'd get her on the monitor, her heart rate would either disappear or go crazy.  They shifted me around on my sides/sitting up... my left side was ok.  But if I sat up or went on my right side, she would get decels in her heart rate.
Finally when I was feeling better, they were just about to release me when I started to have a lot of stomach pain - on my left side and into my lower belly. The nurse came in, and I complained about it (and I have a high pain tolerance).. and she said "yes, you are having contractions.. I was wondering if you were going to say anything"... so they watched me for the next 5 hours.  I barely dilated (not even 1cm) and contrctions were about 5-15min apart, depending. Meagan was still going NUTTY inside.. her heartrate was 129.. but then it would drop to the 70s.. then shoot to 205.. then back to 129 for a while.. then the same pattern whenever there was a contraction..etc.

Not sure how he found out, but, our Pastor showed up as well. I think he was trying to make good on the grief he gave us about not Baptizing/Confirming Meagan.  It was hard to see him, but I kept having to remind myself he is just the vessel - that God was the one truly there with us.  The Pastor went ahead and administered the Annointing of the Sick and then heard my Confession.  He stayed with us for a while until it looked like we were going to go home.  He gave Brian his cell phone number so we can contact him quickly when Meagan comes.  He said he already has his kit ready with the water and chrism. Yep, he better have that prepared all right.

Finally around 6pm tonight, the doctor looked over Meagan's readings on the monitor.  She felt her heartrate was steady enough and that the fluctuations weren't anything to worry about at that point because they had enough times where she was holding steady.. I was still contracting but they sent me home. They told me to call back if they get worse, or I have pain.

So what now? Just wait it out? I'm 33 weeks today.. as of two weeks ago, her head size was almost full term so I have no clue honestly what it is now. I'm still having contractions tonight, but they are the same as earlier. The only "new" thing is some lower back cramping/pain, but nothing awful.  My biggest fear is that she can't block the cervix well and I worry about cord prolapse.  I've just never had contractions this early with my other 4 kids.. and certainly none that have stuck around this long.  It is currently 10:30pm and I've been feeling the contractions since 2pm. Of course now, the events of today make me worry about Meagan 500% more... Sigh...

Tuesday, August 23, 2011


Meagan was going nuts today so I decided to record a little.  I got about a minute at the end, but she had been going even more crazy the 10 minutes before! Love you baby! Keep staying active!

Friday, August 19, 2011


A fellow Hydro mom posted this quote -- Love it!!

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person she is supposed to be. And that, if you're lucky, she just might be the teacher who turns you into the person you are supposed to be," - Joan Ryan, "The Water Giver".

32 week OB check

I went for my 32 week OB check! Can't believe that in 6 weeks or less I will finally get to see my little Meagan.  I'm still measuring about a week ahead -- with her head 4 1/2 weeks ahead, she must really be tucked in there! I definitely feel like it at least!

Everything checked out fine with me - I'm honestly shocked my blood pressure is still low/normal with the amount of stress I feel! But I was glad to hear all was well.  That way I can still just focus on Meagan.

We talked a lot about delivery at the appointment.  I had several questions for her following my conversation with my good friend about the actual procedure and how she does things and we were able to cover all of that.  She also looked over our cord blood kit from Duke and seemed ok with everything, so that was good.

I had originally asked to be on a surgical floor afterwards since Meagan won't be with me - but - the more I thought about it, the more I realized I actually WANTED to be on the floor where people had babies and where nurses were helping moms who had just delivered. I relayed this desire to the doctor, and she said of course, it wouldn't be a problem to be on the maternity ward. 

I also told her I had one "non-negotiable" item - Meagan would need to be Baptized/Confirmed right after birth.  She said it should not be a problem at all - just to tell the hospital at my pre-op and they'd work with me.  She said normally the Priest will sit outside the room, and when baby is about to be delivered, they "throw scrubs on the Priest and bring him in".. LOL.  So as long as we can find a Priest to do the Baptism/Confirmation (which is a whole other issue I won't go in to), that will work out just fine. 

Before I left, she said I will start coming back in a week for 2 NST's a week (non-stress tests) to make sure Meagan is still thriving in there.  Between those twice a week appointments, and my once a week appointment at the Perinatologist, I think I will be camping out at the doctors' offices!

I'm starting to feel very anxious about delivery! Not anxious worried... but anxious excited. Ready for it to be here (well, in a few weeks from now ;) )  I am packing my bags this weekend so I am ready -- writing out notes and instructions for the Grandmas (my mom and Brian's mom will be coming to take care of the 4 kids... get the 2 older ones to school each day..etc..), and just get things ready in general!

I go back to the doctor the 1st of September -- I hope the rest of August flies by!

Wednesday, August 17, 2011

Spiritual preparedness

We have our heads pretty well wrapped around Meagan's condition by now.  We know the ups, downs, ad the risks that can occur.  We have prepared ourselves for the worst, and are hoping for the best.  Medically, Meagan is in great hands.  I have a great OB, we see a wonderful Perinatologist, and the Neurosurgeon that will do Meagan's surgery is more than we could have asked for.  Though we have the "practical" side of things pretty well handled, for now, there is also a side we need to prepare as well.  Meagan's spiritual life.

 As Catholic parents, we not only have an obligation to pass the faith on to our children, but, also a desire to do so.  We want them to be well versed in their faith, and most of all prepared to grow in their faith the best way possible.  The best way we can prepare our children for the challenges of life is to make sure they have a strong faith presence in their life. To make sure they understand God is first, everything else is second. And to understand how the world fits into their faith; not how their faith fits into the world. 

Because of Meagan's precarious entrance to the world, and having such an unknown path for a few years to come, Brian and I have decided to have Meagan baptized as soon as she is born.  We don't normally wait very long anyway, but, we feel it is just as important as the incubator that helps her breathe and the shunt that will help her survive.  After discussing it thoroughly, we have also decided to have her Confirmed simultaneously.  This was quite the battle as our Pastor refused for three meetings which left me in tears - but after contacting the Diocese, he was told to oblige with our wishes and thankfully the sacraments will be given to her at birth.  Sad it came to that, but glad we persevered and were able to fight for our daughter's spiritual well being.  We want her to have as many initiation sacraments and as much 'help' as possible since she already has a fight ahead of her.  Medicine can do great things.. but it has limitations. With God, there are no bounds.

This brought up the debate of a Confirmation name.  We went back and forth over which name to pick.  We re-read through countless Saint biographies and wanted to find the one that fit "just right" for Meagan.  We wanted a Saint that could be appropriate for what she is going through now... but also that she can really learn from down the road, and inspire her.

Brian and I finally decided last night (at 2am while finishing painting our kitchen) that we will choose Gianna after Saint Gianna Beretta Molla for Meagan's Confirmation name.

For those who aren't familiar with Saint Gianna, she was an Italian woman who was a medical doctor and worked mostly in Pediatrics.  She married and had three children, and unfortunately suffered two miscarriages after that.  She finally became pregnant with their fourth child but received some bad news.  They discovered a fibroma on her uterus upon which her doctors had to operate.  They offered grim news and Gianna begged them to spare the life of her child by only removing the fibroma (an easier solution offered to her was to terminate the pregnancy to ensure Gianna's continued health). The doctors abided by her wishes and the life of her child was spared, but she continued to have many complications and pain throughout the pregnancy. 

Her biggest worry was that the child would have pain and she asked God to please not let the child suffer.  When she approached her delivery day, Gianna said, “If you must decide between me and the child, do not hesitate: choose the child - I insist on it. Save him." On April 21, 1962, which also happened to be Good Friday of that year, Gianna gave birth to her fourth child. Despite doctors' efforts to save them both, Gianna succumbed to complications 7 days after the birth. According to witnesses, amid excruciating pain, Gianna cried out, "Jesus, I love you. Jesus, I love you" before she passed.  She was 39 years old.

She was beatified by Pope John Paul II in 1994 and officially canonized as a saint in 2004.  Her husband and that fourth child, a daughter, were present at her canonization.

One of the miracles of St. Gianna recognized by the Catholic church involved a mother who was 16 weeks pregnant and sustained a tear in her placenta.  Her womb was drained of all amniotic fluid and the doctors told her there was no hope now for a live baby.  Instead of terminating, the woman prayed to Gianna and constantly asked for her intercession on behalf of her baby's life.  The woman continued her devotion to St. Gianna, and ended up delivering a healthy baby despite the lack of amniotic fluid that continued for the remainder of her pregnancy. The doctors could offer no medical explanation for the outcome.  There have been  many other miracles attributed and documented by the Church to St. Gianna. 

Brian and I feel there is not a more appropriate Saint for Meagan's confirmation.  She was a mother, a doctor, and also a witness to life.  When she was offered the easy way out, she chose her child.  She also exemplified the roles of wife, mother, AND professional and was able to balance all 3 vocations in a way that was always putting God and family first.  We feel with St. Gianna at her side, Meagan can do anything.

The prayer of St. Gianna:
Jesus, I promise You to submit myself to all that You permit to befall me,
make me only know Your will.
My most sweet Jesus, infinitely merciful God, most tender Father of souls,
and in a particular way of the most weak, most miserable, most infirm
which You carry with special tenderness between Your divine arms,
I come to You to ask You, through the love and merits of Your Sacred Heart,
the grace to comprehend and to do always Your holy will,
the grace to confide in You,
the grace to rest securely through time and eternity in Your loving divine arms.

St. Gianna, guide Meagan's doctors in their work. St. Gianna, pray for us.

Monday, August 15, 2011

Photos: 31 weeks 3 days

Meagan's brain

Meagan's profile

31 week Perinatologist visit

We had our 31 week visit today.  I'm technically 31 weeks 3 days, but nonetheless, I've ended up on this schedule just due to our doctor's availability.

Meagan is still hanging in there. Her head is now measuring about 4 1/2 weeks ahead, compared to the 2 weeks ahead last month.  Her body was right on target at 31 weeks 3 days... but her head was almost 36 weeks though (35 weeks 5 days), so, obviously it has expanded more. 

He measured her remaining brain tissue. It went from 6.6mm to 5.2mm.

They were also able to grab ventricle measurements this time.  The last two times, she has been laying in a weird sideways position so they couldn't get a good cross section of the brain -- so they said they were 'immeasureable'.... this time, however, she was a bit more cooperative. 

Meagan's measurements were a little 'shocking' to hear. But only because we haven't been able to have any measurements the last two visits, so I suppose my mind had gone "numb" to the measurements.  Reading many other Hydro stories has helped, because there were quite a few with similar measurements... and it's all relative as I've learned from other families.  We just don't know what the brain will do after birth.  Nonetheless, hearing how much her fluid has expanded is a bit overwhelming and very scary.

 Keeping in mind again, the normal ventricle measurements being 4-7mm, with 10mm at the highest end of "normal"...One ventricle is now 30mm and her other is now at 65mm!!  

The rest of the ultrasound went well - other than all the Hydro related issues, her body (organs, heart, limb lengths..etc.) still look good.  I can definitely feel I have a "36 week head" inside though.  It makes more sense to me now because I feel full and feel that "limited movement" just like I felt with my other 4 kids in my last 2 weeks with them. So of course I feel this way with her head being much larger at this point.

The doctor said we will keep my Oct. 3rd c-section date ... but to come back in 3 weeks and we will "go from there."  I'm assuming that means he still wants to go to 38 weeks.  I understand this sentiment.. but with her head as it is NOW, I cannot imagine going another 7 weeks until she is delivered!
I've never gone early with any of my kids - but - I have ALWAYS gone right on time (between 39 and 41 weeks)... so I will try to be extra cautious as the next few weeks pass and her head nears 40 week size.  The last thing I want is unexpected early labor because my body is "tricked" that I am further along than I really am due to her head measuring so much larger. I am truly afraid of this happening though because my last 4 kids have been extremely "efficient" ... once they have measured that 39/40 week size, my body goes right into action and does what it's supposed to do.  It's a great thing - except when my daughter with the 40 week head really would be only about 33 weeks along..etc. My other concerns are, of course, for her brain tissue - at what point do you put off early delivery so her body is stronger for surgery.. but risk losing almost all remaining brain tissue? It is a very fine line to walk, and a difficult one.  I'm also worried that going all the way to the original date will make the surgery harder on me...that her head will be quite difficult to get out.  If her head is 40 weeks by 33 weeks, what would it be 5 weeks later? I'm not worried about my pain, just to clarify.. but.. I do want as smooth a c-section as possible because my goal and focus is Meagan - and I need to get well as fast as possible to get to to Children's and see her/hold her.

The above concerns, coupled with the great advice of some of the other Hydro families who have been in the same situation with similar measurements, tell me it's time to have a serious discussion with our doctor about delivery.  Yes, 38 weeks would be ideal ... but... to go into early labor because of her size, or even worse, wait SO much longer with her fluid levels where they are may not be the best course of action for Meagan in the long term. We are talking her brain here...   I'm at the point now where I have to start pushing them because my concern now, with her fluid levels, become brain damage...and we know she already has this to some unknown degree.... if she is a bit more premature than planned, again, not ideal.. but I think it's time to have a talk with the doctors about the adverse effects of really waiting until 38 weeks.  My next appointment wasn't scheduled until almost 36 weeks - I don't want to go to the appointment, have her head beyond full term, and have them suggest delivery with me having nothing planned.  I have the other 4 kids to worry about - childcare, etc.. and my family coming to help is traveling from quite a distance..so I do want to try and salvage some planning time.  I did call back after today's ultrasound and was able to move up my next appointment to 34 weeks now... so I think this is a fair time to bring up the earlier delivery.  So now I go again at 34 weeks, and at least if going earlier is the case, it will give me a little more planning time to make sure my girls are taken care of.  I'll keep everyone posted if our delivery date gets pushed up.

Keep up the fight Meagan. It's not long now until we can kiss you and start helping you.  Just hold on sweet girl!

C-section news

I must say - besides the other Hydro moms I"ve met (who are WONDERFUL and a wealth of information), and others I have talked to about c-sections, I am SO blessed to have my dear friend, whom I am very close to, already have had several c-sections.  It is nice to have that "extra bond" with her as a friend, yet gain so much knowledge from her experiences about the surgery.

We had a "teleconference" the other night between her, her husband, and my husband and me.  She went through EVERYTHING - the ins, the outs, the ups, the downs, all the recovery points, what to expect, what to not expect, and everything in between.  She and her husband were a wealth of knowledge and a GREAT help.  Brian and I feel SO prepared now for the c-section. We know a lot of good questions to ask my OB now .. instead of being hit with them on actual delivery day or afterwards. And since Hydro is such an "up in the air" diagnosis, all this extra prep surrounding the surgery and delivery has been a huge calming experience.

It's a bit awkward coming off of 4 "super - easy" regular births because I know this will be not only a very different delivery method.. but also such a different experience following delivery as far as not being able to immediately hold, feed, and care for my baby.  It's double the stress - definitely. I wasn't 'afraid' of the c-section, as much as I've been "spoiled" with 4 great deliveries, so it is more anxiety about the unknown.

Talking to my good friend about all of this, who is also one of my daughter's Godmothers, really helped us. We feel so much more calm about the situation, and so much more in control... in a diagnosis that robs a lot of that feeling. I'm normally the one that manages the family - I have control of all things.. I'm the "planner" ... and it was a great help to hear from personal experience how to pass this type of responsibility on to Brian.  My friend and I are extremely similar in how we function and run our families, so it was a true "first hand" experience I can directly relate to and she was able to guide me in every aspect so that Brian can really take charge on delivery day since I cannot be in that role.

  And how lucky are we to live when they have the technology available to deliver babies a different way.  I realize c-sections are not ideal for lots of people - however, people who do have babies with problems, or if an emergency arises, or if they deliver large babies that are incompatible with a normal birth.... we should thank God we have this method of delivery available.  Without it, lots of babies would be in more danger, or possibly damage themselves or the mother and outcomes may not be as pleasant.  Without it, our Meagan wouldn't have a chance. 

So, thinking about everything together, I think a good lesson in all of this is to remember that in the end, whether we deliver "naturally", with medication, or through c-section... we are all mothers.. and the end goal is always the same.  To have our sweet babies as safely as possible and be thankful they are in our arms.

Thursday, August 4, 2011

30 week OB check

This morning I had my 30 week check up with my regular OB.  It was the usual - quick and simple. Belly measurement (I didn't even ask what it was - forgot!), heartbeat check for Meagan (140s) and the usual talk.

My OB did tell me today was my last "normal" appointment.  Starting next time at 32 weeks, I'll be brought in weekly to do more thorough exams and non-stress tests to keep a closer watch on Meagan's condition.  Between those appointments and weekly visits to the Perinatologist, I'm going to be quite a busy lady starting at 32 weeks.  The good news is, though, that at least the increased visits mean I am so close to seeing Miss Meagan on the outside.

As we get closer to that point, though, my anxiety does grow.  It's been such a 'far off' end point up until now that I've been able to basically distance myself from it.  But now I start thinking of all the things that will worry me - will I see her.. will I get pictures.. will Brian remember to do everything I normally do... will the girls be ok at home with the two grandmas getting to school and doing homework..etc..   I'm the "strong" one in the family - even after the births of our other daughters, I was always up within 2 hours showering, feeding them, taking their pictures, uploading them to our networking sites..etc.  This time, it's going to be so different.  My OB assured me I will be able to see her - but - I may not be able to touch her if they put her in the incubator directly after the csection.  She did say, though, that we can ask the anesthisiologist to take pictures for us quickly after Meagan is born if we want one with Brian and I in it... so that was slightly reassuring.

All in all, these last 8 or less weeks are going to fly.  The anxiety is tough to stave off.. I've definitely had more random tears flow in the last few days -- but at least I know that it all means the intensity is gearing up towards us finally meeting this little girl and getting her the help she needs and deserves.

Wednesday, August 3, 2011

No Vacancy

Ok I am seriously curious as to what Meagan's measurements are this coming week.  I feel so full.  I feel like I did with the other 4 kids.. but at about 38 weeks ... and I'm only just 30 weeks!  It's the craziest feeling because it's not like I haven't felt it before ... but to feel this way.. this early is all new to me!

Sometimes I feel like she is in a very very strange position - almost pushing up my ribs and out sideways.  I don't feel her as much downward, like I did with my other kids at this point. 

I am at the point now where I cannot even bring myself to eat much, if any, dinner.  I will snack in the afternoon on small snacks, or have a small snack at dinnertime for my "dinner"... but I most definitely cannot fathom eating a meal at night anymore! There is just NO vacancy.. for any food at night. At all.

I still feel her moving around, which is good - but the movements are definitely different.  She doesn't 'morph' my stomach as much as my other kids did - probably because she is lacking in room.  It's gotta be tough having a 30 week body but a 33 week head. She is probably getting uncomfortable too.  She does get the hiccups a lot though. Which is always an interesting experience.

I sit here and think I have a whole 8 WEEKS until my csection -- I just don't know where she or I will grow to accomodate her over that time! It seems like I'm pretty much maxed out already! Such a crazy feeling.