Thursday, March 31, 2011

Quick update

So things keep changing almost daily, here is the latest as of this morning.  April 14th is off the table because the neurosurgeon doesn't want to do the surgery the same day the baby is born, and is she unavailable on April 15th.  As of today, they finally found a place to squeeze us in and Austin should be here on Tuesday, April 12th.  C-Section is scheduled for 2:30pm and Austin's shunt surgery is scheduled for 7:30am on April 13th.

We met with the surgeon on monday and I got a really good vibe this time.  She was very compassionate and caring and very positive about things.  She said the surgery itself only takes about an hour and that the recovery time is about two days.  Craziness!!!

So, for now things seem to be set.  I have two appointments tomorrow (pending the foot of snow we are supposed to get)...OB and another ultrasound.  Hopefully this should be my last ultrasound before he arrives, but who knows.  I'm trying to go with the flow as much as possible, but its not really in my nature.

Sunday, March 27, 2011

Squeaky Wheel Gets the Oil

Is that how the saying goes?  Regardless, we had a crazy week last week, but after some arguments and tears (on my part, haha) I was able to get what I earlier date for my c-section!!!!

Last tuesday, I get a random message from the neuro-surgeon's office saying that the surgeon is not available on April 26th for the shunt surgery but that her partner is, so the plan was for me to have my csection at 9am that morning and then Austin would have his surgery at 2pm that day.  Now if you have been following my blog, you know that my c-section was supposed to be April 22nd....good I was immediately confused.  When I called the office back, I was told that both surgeon's were not available on April 22nd, and the hospital was booked on April 25th, so now my c-section is on for April 26th.  (Mind you, that would be 39 weeks and 4 days gestation!)  Would've been nice if I got a call from my OB telling me that the plan had changed.

So on thursday I went to a regular OB appointment, and this appointment was not with my regular OB, but with a doctor I had never met.  I let her have it (and kept apologizing because it was not her fault).  I expressed my frustration with the new date, that no one called me, and that there is no reason why I should be waiting this long to have Austin when he has a serious medical issue already!  Then I broke out the tears.  This doctor explained to me that it was hospital practice/policy to not deliver before 39 weeks unless there is a medical reason documented and explained that since Austin already has the hydrocephalus, no one was going to risk his lungs not being developed.  We went back and forth about this topic for a while, talked about steriod shots, talked about whose decision it ultimately was....and she finally agreed to call the Perinatologist after I left to discuss what his recommendations were and see if she could get some clearer answers as she said it was ultimately up to him to decide.

Later that night, the OB called me back.  She said that the Perinatologist recommended deliver between 37 and 38 weeks!  WHAT???  Would've been nice if my OB knew that because there would have been no issue to begin with!  The lack of communication between these doctors is just amazing to me.  At any rate, we decided to do 37 1/2 weeks and picked April 13th, but of course the hospital is completely booked that day.  So I'm set for April 14th at 7:30am.  Still of course waiting for the definite that the surgeon is available this day, but we go tomorrow to meet with her, so we'll know definitely then.  I did find out that there are certain criteria that the perinatologist uses to suggest deliver before 37 weeks and so far Austin has not met any of those milestones (which is fantastic!).  One of them is that his head measures 42 weeks.  I think there is a good chance of this happening at my next ultrasound on friday.....I will be 36 weeks then and his head was already measuring 6 weeks ahead, so we'll see.  Guess we could be meeting Austin even sooner than the 14th, but for now I'm satisfied with that date.  Starting to get nervous......but really excited.

Keep those prayers coming!  I can already feel that a miracle is going to take place with Austin.

Otherwise, things are good.  Jake and I have managed to get ourselves sick with a cold, so I haven't been able to sleep in two days because I can't breathe.  And all the medicines that are "safe" to take when you're pregnant don't work!

Thats about it from the homefront.....I'll update after our appointments this week (Surgeon tomorrow, OB and ultrasound on friday).

Thursday, March 17, 2011

34 weeks

Not really too much to report on the Austin front this week.  I did call to find out what the result of the conversation between the perinatologist and the neurosurgeon was, and quickly learned that the perinatologist hadn't even reached out to the surgeon as of monday.  My understanding is that by tuesday afternoon, the surgeon picked up a copy of my last ultrasound pictures (she didn't feel that a written report was enough to make a decision).  And I haven't heard anything since.  So guess its all a waiting game still.  I scheduled another consultation with the surgeon though and go on March 28th, just to go over what specifically is going to happen with surgery, etc.  So at least when I go and meet with her maybe we can start discussing the reality of waiting until 39 weeks.   I am starting to get really uncomfortable...maybe because as of last week, they estimated that Austin weighed 5 pounds 11 ounces already! 

On the Jake front....we had his annual IEP on monday.  I was all ready for battle (as it was a battle last year to get the services I wanted for him!) but no battle was needed this year.  We got all the services again for this coming school year with no fight at all.  So thats one less worry.  It was great to hear all of his therapists talk about how well he has done this past year and how he has progessed.  He tested above average for speech comprehension and auditory memory and he tested just below average for his articulation.  Not bad for a kid who has only been hearing two years!  We are so proud of him!! 

Jake is still very excited about Austin.  Today, while getting in the car to go to school, he pointed out where Austin's car seat is going to be and then asked me "what else are we going to do with Austin".  So I told him all of the things we are going to do with him....and even told him that we would be going to see Dr. Chris (Jake's pediatrician who he LOVES!).  Jake responded "You take Austin to see Dr. Chris, I'm going to grammas".  Quite the little nuthead.

Thats about it for's a pic of Jake and I with Jake doing "nice, nice" to Austin.....

Wednesday, March 9, 2011

6 1/2 more weeks to go....

I thought at this point in my pregnancy that I would be saying "3 1/2 more weeks to go"....NOT 6 1/2 weeks to go!!!  But it appears as though Austin won't be making his appearance until 39 weeks gestation!  Craziness.

I went yesterday for another ultrasound (not really sure how many that is now total...9 or 10 maybe?).  At any rate, we were called into the room by the technician who did our 20 week ultrasound where they found the hydrocephalus....Kevin and I both looked at each other and were immediately disappointed.  We already had a bad taste in our mouth to begin with just because it was her and then we found out that the perinatologist on that day was the one that "broke the news" to us 12 weeks ago.  I don't like that doctor.  From day one she has not had any compassion, sympathy or tact.   So just having those two people to deal with was bad enough...then we ended up in the same room as my 20 week ultrasound....just a bad feeling all around.

The tech scanned him and didn't talk that much.  Kevin and I asked questions about his head, but I could see the measurements on the screen anyways.  She said that they were "about the same".  (The ventricle sizes went up slightly, but nothing major, which is awesome!).  His head circumference is now measuring 38 weeks (almost 6 weeks ahead).  I asked the tech to check all his limbs and she kinda gave me the "ugh" face, but she did it.  I also asked for a 3D picture, but Austin had his hands and feet all covering his face.  Guess he's pretty flexible!  Haha.  We got to see Austin grabbing his one foot with his hand though, so that was cute.  When she was done scanning, she left the room to get the doctor. 

A minute or so later, the tech returned to the room by herself and said that the doctor looked at the results and said to come back in 4 weeks for another "growth check".  I immediately interjected and said that my OB wanted them to start discussing delivery options/dates so we can get things in order.  The tech responded "She wants US to talk delivery dates?".  I reminded her that the delivery would ultimately be up to the perinatologists and neurosurgeon, not the OB.  She left the room again and again returned less than a minute later to tell me that the perinatologist will reach out to the neurosurgeon and "send a report to the OB".  She told us as of now to schedule another appointment in 4 weeks! 

Kevin and I left the room and I was immediately annoyed!  Annoyed for one that the peri couldn't even come into the room and say hello to check in on give us the results of the ultrasound.  Are you serious?  I'm a high risk pregnancy...and this is the doctor that diagnosed me.  I don't care what she was doing or how busy she was, for her to not even come into the room and say hello is just ridiculous on its own.  And I was also extremely annoyed that they were just like "ok, come back in another 4 weeks".  I'm already 32 1/2 weeks pregnant!!!  The talk all along was that I would deliver Austin early...probably 36 or 37 weeks gestation and I would be given steriod shots to boost his lungs.  Now there is no mention of that??  Just simply ridiculous....

At any rate, we scheduled our next appointment for April 1st.....and then left the office and I headed over to my OB appointment.  I talked to the OB about the ultrasound.  She indicated that she has been talking to other high risk OB's about my pregnancy and all have agreed that it is better to wait until 39 weeks gestation.  She stated that the longer the baby is in the womb, the better chance he will be fully developed and will not have any other issues (such as breathing, etc).  I asked her why Austin couldn't be born at 37 weeks instead the latest, since 37 weeks is considered full term.  She indicated that for every week past 37 weeks, the baby has a 15% better chance of lung development.  She explained that since its already known that Austin has medical needs and will have surgery intervention when he's born, she said that its more viable for him if we wait longer to deliver him.  I don't agree with this.  I mean I agree that I want him to be as developed as he needs to be and I certainly don't want to him to have any other medical issues from being premature, but bottom line in my opinion is that regardless, we are talking an extra few weeks of him being in utero, where pressure from his fluid continues to build and we don't know what kind of effect that is going to have on him in the long run.  But I'm not a doctor and I have to go with what the professionals are saying.  Its just aggravating though because every other parent I have talked to has had their delivery early!  Not to mention the fact that his head is already measuring 6 weeks bigger than it should who knows how big it will be after another 6 weeks goes by!!!  And to top it all off, my OB has decided that she is going to do a vertical incision when she does my c-section, to make sure to allow for enough room for his head to come out.  Vertical incisions take much longer to heal and recover from then the normal horizontal cut.

So, all around it was just a frustrating day.  I'm trying not to let it bring me down though because regardless, the fact that his ventricles aren't increasing drastically is great.  Kevin keeps trying to remind me that the doctors can't be that concerned about the slight increases monthly, otherwise they would be taking Austin earlier.  I dunno.  I have just had in my mind that I would be delivering around 36-37 weeks...and this all just kinda burst my bubble.  But with that said....I'll get over it and try and enjoy the last 6 weeks or so that I have left being pregnant.   

So, my c-section is scheduled for April 22nd (good friday) at 7:30am. 

Friday, March 4, 2011

32 Weeks

I have been saying that my pregnancy is going very slow especially since we got Austin's diagnosis.  However when I think of it as being 3 months ago that we got the news, it seems like it actually has gone pretty fast.  I go on tuesday for another ultrasound, and although I'm nervous as usual, I am pretty excited for the appointment.  I'm really hoping they start discussing delivery with me.  I just want a date...or an approximate date.  The "planner" in me really hates all this not knowing.  I sat down at work this week and tried to plan out my leave and how I was going to put in for my time but its hard to do that when I don't know when my last day is going to be.  I am going to try and work up until my c-section so I have more time off with Austin after he's born.  Otherwise, I'm holding up pretty good, with the exception of the normal pregnancy stuff (like getting huge, not being able to sleep, getting winded easy, etc). 

In other news, (and I'm really knocking on wood as I write this!) Jake appears to be just about potty trained!  He'll be 3 1/2 years old in a few weeks.  I haven't tried to push the issue with him because everyone says that when kids are ready, they will do it on their own.  And finally it appears as though he is ready.   We went all week without an accident (at school and home).  So, wish us luck that this continues...

Thats about it for now.  Please continue all of the prayers and pray that we have another good ultrasound on tuesday.  I appreciate all of the support...