January 29th, 2014- The Van

A fun post for you today- we are now officially a minivan family!

One of the things we realized not long after I found out that I was pregnant was that we would need to replace my car, because it would not hold 3 car seats (not comfortably, anyway) and replace it with a van.  

I have owned my 2003 Toyota Matrix since August of that year.  Dad came to RC at the beginning of my junior year of college when my Escort started giving me trouble.  He wanted me to have a reliable vehicle, so he made the trip and we bought my red Matrix, sight unseen (in hindsight, Mom should've been the one to come- she is better with cars and a MUCH better negotiator- love you Dad!).  A day or so later my roomie went with me to pick it up when it arrived at the dealership; I remember the two of us squealing as we drove it off the lot!  It has been a great car, we took good care of it, and it really never gave me any major trouble.  So this is a farewell to the 'car of my youth', pictured below (not the best picture since it was filthy due to all the snow and salt, so just imagine it clean and shiny).

My dependable Matrix as we left her at the dealership...and yes, she's gone a bit ghetto from missing a hubcap.  It went missing  about a year ago and since it wasn't essential, it never got replaced!

We traded it in and got a 2006 Dodge Caravan.  Obviously it is a used vehicle.  We were not thrilled about buying used (we like to buy new, then keep vehicles until they die...we would never have gotten rid of the Matrix unless and until we had to) but it was really the only option.  I did a lot of research and found this vehicle and thought it looked like a good choice.  Wednesday I had a snow day and Russell was off of work, so we left the boys with Russell's parents to go look at it and ultimately buy it.  I was nervous because the last time we went to this dealership was four years ago when we bought our CRV (which will barely fit 3 car seats, but we will somehow make it work!) and Mom came with us and really gave the salesman her best and we got a great deal.  I was hoping I would be able to do it on my own (I was constantly texting her with information and asking for advice!) and I think I negotiated pretty well, for my first time.

Luke has been SO excited about the new car.  I picked him up from Cubbies that night and he was thrilled to ride in the new van.  Every time we have gone somewhere since then he has been very disappointed if he doesn't get to ride in the new van ("Mommy's red car is old and stinky.  This car smells good and is awesome!").

The next day I had another snow day, so I drove the CRV to the dealership to get our (free!) state inspection and drop off the title of the Matrix (yes, we forgot the title when we went to buy the new car- oops).  While waiting for the car, we got some more good news; the SNP Array from the amniocentesis came back completely normal!  It looks like Ally has no genetic abnormalities!  We are so thankful for such wonderful news.  The last major test will be a fetal MRI to take a better look at Ally's brain, which will be on February 11th.  After that, it should be just regular doctor visits and visits to MFM to keep an eye on the head growth as we get closer to 39 weeks.

Another thing that happened later that day is that we got a package from the Dandy-Walker Alliance.  The bracelets and car magnets we ordered finally came!  (Too bad the Matrix never got to carry one.)  You too can sport one of these stylish bracelets or your new (to you) family van (or any vehicle in your fleet!) can sport one of these ribbon magnets by going to http://www.dandy-walker.org/magnet-request/.  Donations to the alliance appreciated but not required!

Thanks for your prayers, comments, and concerns.  You don't know how much they mean to us.  As I am now officially 30 weeks it is getting closer and closer to Ally's arrival and (hopefully) a lot of questions answered and decisions to make about the future.  We are trying to enjoy our current 'normal' for the little time we have left with it and rely on God and the support of our family and friends (ya'll!) with the uncertainty ahead.

January 22nd, 2014- The Unusual Uneventful

This was a very strange week.  Monday was MLK day, then we were out of school Tuesday and Wednesday due to 'snow'.  It worked out well for me, since I had my next appointment at MFM on Wednesday afternoon, so I didn't have to take time off work.

This appointment was unusual in that it was fairly uneventful.  We were taken back by our 'usual' sonogram tech and she performed the sonogram.  One thing that was interesting was she was able to get a frontal view of Ally's face.  As I was watching, Russell said exactly what I had been thinking- "She looks like Ben!"  Sometimes, even with everything that has been going on, the fact that in a few months we are going to have another BABY...it just doesn't seem real.  Often we will be out somewhere and I'll see people with babies and think "I'm going to have one of those!  A girl one!"  I think that sometimes in dealing with her diagnosis and all of the resulting testing and waiting Ally has sometimes taken on the form of merely a medical condition that we will have to handle more than a real live person who is bound to bless our lives and bring joy to our family no matter what.  Seeing that face, looking like our boys...just makes it a little more real.  The tech printed it for us to take home.  

The facial sonogram picture that we both thought looked like Ben!

After she finished we had a bit of waiting (as usual), during which I knitted, and then we were taken to our doctor's office along with our point nurse to discuss the findings.  

Most of the news was pretty good.  Ally's head is still measuring large, however it has not grown exponentially- it appears to still be only 2-3 weeks ahead of where it should be.  If it continues this way, there may be a chance that she will not require a shunt.  However, our doctor is not a neurologist, so that will be determined by the neurosurgeon.  We have a consultation with him/her (not sure which right now) early in February so that we can ask all of the questions we have about the hydrocephalus and shunting.  Also, depending on when I deliver, there is still the possibility of avoiding a c-section.  The 'deadest' deadline for delivery is 39 weeks (which is what I am hoping for), but depending on what they see closer to the end (and anything the testing I am still waiting on reveals), they may decide to deliver anytime between 37 and 39 weeks (either way it will be a scheduled delivery).  Again, we still have a ways to go before we will know any of this for sure, but we are still holding out hope for the best outcomes.

One new development that she noticed is that the ventricles in the back of the brain (where the gap is and the fluid is building) are starting to take on a funny shape.  This may be nothing, but it could be an indicator that Ally is missing part or all of the corpus collosum, which connects the two halves of the brain.  If this is the case, again it may not affect her at all, or it could affect some parts of development; just like the Dandy-Walker, we would have to wait and see what happens as a result.  

We are still waiting on the results of the amniocentesis SNP Array and we are in the process of trying to schedule a fetal MRI to get a better look at Ally's brain.  Our doctor doesn't think that either test will show anything significant (which would be good) but wants to be prepared should they give us any clues to Ally's condition and care she will need after her delivery.

This next week should be a fairly uneventful one- no doctor's appointments at all!- but the first week in February is jam-packed.  I am looking forward to a relatively calm week in our normal routine.

Again, we thank you for your prayers.  Please continue to pray for our possible home change.  Also, I have been having some anxiety regarding the later part of this year when I would head back to school.  Just thinking about resuming my usual teaching responsibilities (as of the beginning of the new semester my classes have been taken over by my sub, and I am helping other teachers in their classes- a great situation because it helps my work load and stress level and I don't have to worry about missing a lot of instructional time for appointments, and the students have some consistency through the end of the year) along with the thought of all my responsibilities with family and home, now larger with the addition of Ally is overwhelming me at times.  However, I am trying to focus on the here and now and let God take care of my future and that of our family.  He will give me the strength for each day, whatever comes- He promises that in His Word.

January 17th, 2014- The Reality Check

On Sunday I was browsing the internet and decided to check out the page for Carter's Run, the 5K that raises awareness for Dandy-Walker in Virginia (www.cartersrun.org).  While there I was looking at the tab about Carter himself.  He is now 6 years old and doing pretty well, but like most Dandy-Walker kids has had some issues and developmental delays.  He didn't crawl until almost 20 months (the age Ben is now- hard to imagine!), and didn't walk on his own until last May.  He also nursed exclusively for 14 months, because he has issues with swallowing and eating, therefore he now gets his nutrition by a feeding tube- he has feeding therapy so that he can eventually eat normally.  He has low muscle tone so he gets therapy for that and in his toddler years his growth went off (as in, under) the charts (but at 3 years old with the help of the feeding tube he was back on the charts).  However, he has never had hydrocephalus and attends school in a special needs classroom and sometimes in the regular classroom with the help of an aide.

As I was reading this, it made me nervous and scared.  As I've said before, every child with Dandy-Walker is different and develops different issues and at their own pace.  I feel like we've tried so hard to be positive about Ally's diagnosis that I am avoiding what may be the reality of the situation.  Since I have only dealt with healthy, normally developing children, I feel that I am setting myself up for major disappointment and heartache when Ally doesn't follow in her brothers' footsteps- and it won't be her fault!  She would be born this way and is very likely to overcome it in time, as Carter is/has done (as well as many, many others whose stories we've read about), but how will I handle and react to it when it does occur?  When she can't sit up at 1 year old?  When she can't walk until she's four?  If she can't eat without a tube or talk to us or play with her brothers appropriately?

At the same time, I feel guilty for even thinking this way.  There are so many children out there who have conditions that are much worse than Dandy-Walker variant with hydrocephalus.  Chances are good that Ally can live a very normal life; many children with worse conditions never have that hope, especially if their condition is terminal.  With all that I have been blessed with, focusing on what may be Ally's challenges seems so petty and selfish.

Sunday our pastor preached a sermon on dealing with depression.  It was a very good and timely sermon for my life.  While I am not clinically depressed, as he stated everyone deals with low times in their life where they may experience some level of depression.  I have been battling this since probably around mid-September.  Since mid-December it has gotten somewhat better due to some changing circumstances, but dealing with the results of Ally's presence and subsequent diagnosis has been a level all its own.  I meant what I said in my last post- I really am doing ok, no need to worry about me- but it doesn't mean that sometimes it doesn't get overwhelming.  One of the great things that our pastor said in his sermon was (and I believe it may have been a quote from someone else, but I'm not sure who) "we need to stop focusing on the 'what-ifs' and instead focus on 'God is'." 

This is exactly what God has been telling me for the past several months, and I felt that this summed it up so perfectly.  There are a lot of unknowns about Ally and life in general, but focusing and worrying about them is not useful- or faith-ful.  My God is greater than all of my problems, worries, or situations, including Ally's.  This is something I've had to continually remind myself of, sometimes just to get through the day or a certain situation that occurred during the day (even before I knew about this pregnancy).  I believe God is refining me and making me have to purposely remember to rely on Him and not myself.

I found this picture on Spirit FM'S facebook page and thought it perfectly pictured what we need to be doing!

We thank you for your continued prayers for us.  We have gotten results from  the basic genetic study from the amniocentesis (the one we did with blood work before) and the results were the same- no Downs, Trisomy 18 or 13.  I would appreciate prayers about a major life/home change that we are considering making, largely as a result of Ally's condition (though there are other factors as well), that God would show us what He would have us do and then work it out so that we can make it happen.

January 8th, 2014- The Amniocentesis

On Monday I called our point nurse to let her know I wanted to schedule the amniocentesis.  My doctor had said that if I decided to do it that she would like to do it by 26 weeks, because after that there is a little bit more of a risk for the baby and premature labor.  Since I was already on week 26 I knew it was 'now or never'.  The nurse scheduled me to come in Wednesday at 4:00.

We got an unexpected day off from school that day due to the extreme cold temperatures.  I was supposed to go in Thursday morning for my regular OB appointment so I called their office to see if they could squeeze me in since I was already off work and they said they could.  I took Luke to school and kept Ben home with me that day.

When I dropped Luke off his teacher (who we've been keeping updated on Ally) asked if there was any new information.  She said the other day at prayer request time Luke raised his hand and said "We need to pray for Ally for the needle in her head to help her head get better because it's really big and it's NOT funny."

I can't even begin to express how I felt when she told me that.  I was so proud of Luke for wanting to pray about it, being (somewhat) knowledgeable about what was happening (I'm not sure where he got the idea of a needle, that's the second time I've heard him say that...maybe he thinks surgery is a needle?), and so happy that he's already become so protective of his little sister.  I explained to her about the hydrocephalus and the surgery to place the shunt.  I am so blessed by my Luke.

As I left Luke at school, I drank my glucose drink in the car on the way home.  I was supposed to go in at 10:15, so I finished the drink at 9:17.  I ran home, got some toys to entertain Ben at the office, and then drove to the doctor.

Everything at the appointment went well (including Ben's behavior!).  I was not a gestational diabetic (blood sugar was 92, high is 140) and my iron levels were good too.  I actually met with one of the doctors instead of Terry and we were able to discuss the diagnosis of Ally and the likely possibility of a c-section.  Since nothing is for sure right now we weren't really able to discuss much else, though I did say I thought the delivery would be scheduled around 39 weeks unless something else came up.  I made my next appointment for 4 weeks (February 5th) and went home.

I had a relaxing few hours at home with Ben.  At 2:30 I woke him from his nap, went to pick up Luke from school, drove them to Russell's parents house, and drove to MFM, barely making it before 3:50.  Russell was already there waiting for me. 

A different sonogram tech took us back this time.  She did a preliminary sonogram to make sure fluid levels looked good and to find out where the placenta was (so they would try to avoid having to put the needle through it) and to scope out the best place for the needle placement.

Then we waited.  And waited.  She came back in and said she was sorry, our doctor was backed up with patients.  I knew it was because she took her time with them (as she has with us) so I didn't mind waiting...except it gave me time to think about what we were about to do and get nervous.  Luckily, I had brought some knitting with me, so I had something to keep my hands and mind busy.  Our sonogram tech was a knitter too, and her mom was a math teacher, so we had a lot to talk about and she kept us preoccupied.  One of the lab techs (who is a former student!  She was actually the one who drew my blood for the blood test in December.  I'm sure she enjoyed being able to say she needled her high school geometry teacher.) came in with the supplies and went over what I should expect after the procedure, as well as what I should look out for and avoid for the next 24 hours or so.

Finally the doctor and our point nurse came in.  She asked if I had any other questions, and then they laid me back to prep me.  The whole procedure took about 5 minutes from start to finish.  Since I was laying flat it was hard for me to see (which was good, I didn't want to see anything, my eyes were closed the whole time) but I did get a glimpse of the needle just before.  I had imagined it was going to be kinda thick, but I was relieved to see that it didn't look any different from a needle to draw blood, only longer.  It also didn't hurt as much as I was expecting (in my head I was giving myself a pep talk, saying you've had 2 babies with no drugs, this is going to be nothing!) and was over sooner than I expected.  Afterwards they checked everything out by sonogram (which of course they also had going during the procedure to help guide them) to make sure Ally still was moving and seemed ok.  Then I was taken to another room where I was hooked up to the fetal monitor for 20 minutes to make sure her heartbeat seemed normal and there was no distress.  Both the doctor and nurse said that her heart rhythms looked fantastic, especially with as far along as I was and having the amniocentesis done this late.  We talked with the nurse for awhile about some more questions that we had (you know how you get talking about something, and it makes you think of more questions?  That's how we get every time we go to an appointment there).  We scheduled my next appointment for the 22nd and they are going to work on getting us an appointment for a fetal MRI and to tour and talk with NICU staff as well as an appointment with the neurosurgeon to discuss the placement of the shunt, because right now that's where the majority of my questions stem from (that I can get solid, real answers to).

Since I had met Russell at MFM, I drove myself home and he went to pick up Ben from his parents' house.  His Dad had taken Luke to Cubbies and would bring him to our house when it was over.  I got home, took my shower, and warmed up some leftovers for dinner.  Russell was very concerned about me for the next day because I was supposed to kinda take it easy (they said I didn't have to be on bed rest or anything, but of course with teaching you are walking around and moving a lot) and not lift anything above 25 lbs. for a day- which included Ben.  I determined how to minimally lift him (out of the crib the next morning, and then in and out of the car- he could walk everywhere else) and told Russell not to worry about it (I was NOT going to take a day off just for that!  I need to be careful with my time off to make sure I have enough for my maternity leave along with all the appointments I have to have now.)

I had no ill effects from the amniocentesis.  I didn't have additional cramping or soreness, no bleeding or fluid leakage or anything else to be concerned about.  I have to watch for signs of infection for the next week (flu-like symptoms) but otherwise it has been fine.

Now we wait for the results of the testing and the ultrasound from our next appointment in 2 weeks.  They are running 3 tests: the infection study, which should come back within about a week or so and should (hopefully) have the same results as the blood test from the 12th; the chromosomal study for Downs, Trisomy 18, and Trisomy 13 which again should (hopefully) have the same results as the blood test; and the SNP Array, which will look at pieces of individual chromosomes and hopefully give us more answers about what genetics may have 'caused' the Dandy-Walker and if there are any other concerns that can't be seen by ultrasound (and rule out some possibilities as well).  This test will take 2 - 3 weeks, depending on the contents of the fluid.  If they have to grow Ally's cells from the fluid, it will take longer, but if cells/tissue is already in the fluid, they won't have to take the time to grow her cells and can start the analysis sooner.

This is my first post since the initial 'reveal' of Ally's condition to most of you and the 9 original blog posts.  We just wanted to take the time to say thanks for all of your prayers, comments, and concerns for us.  We appreciate the love you have poured out for us.  We want you to know that we are doing ok by the grace of God, especially as we find out more information we are better able to prepare for life with 3, one of which may have some special needs.  Everything has brought us closer in our marriage (I feel) and we are taking things one day/appointment/tidbit at a time.  We would appreciate your continued prayers, and other than that the only thing that we 'need' right now is your friendship & support- for those of you who are local, we would love to see and hear from you more, especially if your children are friends with our boys.  One of the great things about this situation is it has reminded us of the many friends we have, though we may not see often, from our many phases of life: high school, RC, Colonial Avenue, Spotswood, New Century, Mt. Pleasant, various workplaces (Member One, Staunton River, William Fleming, & Franklin County), and of course our family, and how thankful we are for those people and how they supported us in those seasons and now together in this one.  It is like looking at a great tapestry of our lives, and we are so grateful that each of you are a part of it.  

January 4th, 2014- The Prayer

Ah, Saturday morning.  The morning where Luke always gets up first and goes and turns on PBS kids and Russell and I stay in bed until we hear Ben babbling through the monitor.  This particular morning I had not slept well after our appointment the day before, turning so many things over in my mind.  I had also come to the realization that we would need to start explaining some of these issues with Ally to Luke to prepare him for what was to come.

We haven't really let him in on much.  Russell's parents would often keep the boys for us during appointments, so afterwards when we went to pick them up we would tell them the latest news.  Luke was usually right there, but I don't think he completely understood what we were discussing, and he probably wasn't completely listening either.  However, it was time to start letting him in, slowly, on what was going on with his sister so he wouldn't be scared or confused.  Luke usually does really well when he knows what to expect (and Ben is too young to understand much of anything).

Russell and I talked about it while we lay there.  I felt it would be best to just discuss the fact that Ally's head would be larger than normal so he would not wonder what was wrong with her head.  We would need to discuss the surgery to place the shunt as best we could and explain that she would be in the hospital longer to recover and she would be in a special part of the hospital that would have special rules, especially for him being so young.  I wanted to tell him about the possibility of Mommy having surgery to get the baby out and that I would be in the hospital longer than normal and be more limited when I got home at first, but then I thought it may be best to wait until we knew about that for sure and plus, the hydrocephelaus itself may be enough information for him for one day.

We called him into the bedroom and had him get on the bed with us.  We explained to him that Ally's head was getting a lot of fluid inside of it and it was making it very big, so when she was born she might have a larger than usual head.  We also explained to him the Ally would need surgery to help get the fluid out of her head.  They would put a tube in behind her ear that would run down to her tummy and let the fluid drain and hopefully her head would get better.  Ally being in the hospital may not be like it was when he came to visit Ben in the hospital either.  Before he came in, got to hold Ben, and everything was good.  This time, things may be very different depending on how she was doing after she was born, especially if she was in the 'special' part of the hospital.

The whole explanation took about five minutes.  Luke listened carefully and made exclamations at certain times ("The tube will go down to her tummy???")  And then he was fine and got up and went back to the living room. 

That evening Russell was out at a work social function, so it was just me and the boys for dinner.  I made myself a plate of leftovers and the boys some ravioli.  As we were sitting down beginning to eat, I asked Luke if he would like to say the blessing.  He said yes and began to pray.

Before I explain the prayer, I need to explain how Luke says the blessing.  Usually in a blessing before you eat you thank God for the food.  Luke rarely does this.  He often asks to help us eat the food (which in his case often requires a lot of prayer, being as picky as he is) and he will often pray for others.  Usually he prays for Ben, especially if he's been sick.  His preschool teacher told us that he prays for Ben all the time at school, which I think is usually at mealtime. 

So I was a little surprised when he prayed something along the lines of "God please be with Ally help her head to get better and help her when they put the needle in her head to help her head get better.  Amen."

I was so touched.  He said as he began to eat, "We can pray for Ally."  I said "Yes, we need to pray for Ally.  You can pray for her anytime."

At least I know he listens sometimes.

Luke has really been the best big brother. I was a little concerned when Ben was born that he would be jealous, but he was quite the opposite. He loves his little brother very much. I'm sure as Ben grows and gets more vocal and verbal they will have their share of fights (especially because in a few months they will begin sharing a room), but you can tell Luke really cares about Ben.  He is already showing the same affection for Ally.  He will come up and hug and kiss my belly and say, "I wanna give Ally a kiss.  I love her."  He was so hoping for a sister this time, and was really happy when we found out at the gender reveal party that she was, indeed, a girl.  I know he will be so accepting of her, no matter her limitations, and will probably be very protective of her as well.  I am so proud of him and the person he is becoming.

January 3rd, 2014- The Progression

The day of my second MFM appointment I again left work early to get to my 3:30 appointment.  I was somewhat looking forward to this appointment, because I had a bunch of questions ready that I wanted answers to.  I was quite anxious to talk to the doctor.

Russell met me a little before 3:30, and we were taken back by the sonographer a little after 3:30.  I got on the table and began the routine.  It was the same tech that had done our sonogram almost 3 weeks ago and had done our gender reveal sonogram too.

This sonogram did not take nearly as long as it did 3 weeks ago.  After she was finished she told me to stay on the table 'gooped up' in case when the doctor came back she wanted to take more pictures.  She left to get the doctor.

Russell and I were left alone in the room.  We sat and chatted for a bit.  After a while I was starting to wonder what was taking so long.  I finally got tired of laying there 'gooped up' and used the towel to wipe off.  I was in the middle of this when she finally walked in.  "Don't wipe up yet!" she said.  

She sat down, gooped me up again, put the machine back to my belly, and gave us the news, able to show us at the same time.  The Dandy-Walker gap had gotten larger.  While she did not believe that it was getting worse- it was still classified as variant- the issue was the gap was filling with fluid rapidly.  So while the extra fluid would make it appear worse, she didn't really think that was the case; more so the fluid was pushing brain tissue aside.  What has happened is that our Ally has developed hydrocephalus.  Right now, from ear to ear across the top of her head, her head is measuring at 29 weeks- 3 weeks ahead of where she should be.  This means she will definitely require a shunt shortly after birth, and her head will likely be abnormally large, at least at first.  The shunt may completely bring her head to normal size/shape, or may just help it somewhat.  Again, there is a lot of unknown with this, and it is something they will have to continue to watch and see.

I asked if there was any possibility that the fluid would stop building up.  She said that although that was very unlikely, it may stabilize somewhat and not be as bad as it could be.  I asked when the shunt would be placed, and she said that would be up to the neurosurgeon performing the surgery depending on the severity of it when born.  I asked if there was a good possibility of an earlier birth being necessary because of the possibility of this being very dangerous and causing more harm without the shunt, and she said most likely not.  Unless Ally shows some other issue later or turns out to have some other serious condition we don't know about yet, it would be better to have a term baby needing a shunt rather than a pre-term baby needing a shunt.  

Then came the big blow, one I had been expecting since I heard the doctor say her head would be large: there was a very likely chance that this delivery would require a c-section.

I know, I know, so many women may read this and think, what's the big deal about that?  I had one/two/three babies by c-section and survived, you'll be fine.  I even know one mom who had 4 c-sections.  Voluntarily.  And wanted more kids, but her husband convinced her it was too risky for her.  I think she's crazy.  (No offense.)  

The thing is, the one thing I had hoped for in all this craziness was that I would be able to have a natural birth like I did with my boys.  One thing is for sure: I am good at getting pregnant (obviously), have had relatively easy pregnancies (even this one, with all the complications, has not been difficult physically for me at all), give birth with relative ease and no interventions (as much as you can say 'ease'- it is called labor after all and it was not the most fun time I've had in my life for sure), and make enough breastmilk to nurse and pump for a full year.

With Luke, I didn't even know I was in labor.  I was having 'stomach pains' all day that Saturday (a week before my due date) but brushed it off as Braxton-Hicks because they weren't regular or particularly painful.  After I threw up dinner and the pain got worse, we called the doctor, who thought I just had a stomach bug!  Finally he had me come to the hospital to get checked out, and I was 7 centimeters dilated!  I'll never forget the frightened glances Russell and I exchanged when the nurse told us "Looks like you're going to have a baby tonight."  We got to the hospital around one in the morning.  At 3:03, we had a 7 pound baby boy.  I never got an epidural, and even if I had it may not have really had time to work (which is why I ultimately decided to not get it- remember the fear of needles?  I had wanted to try without it anyway.)

With Ben, at dinner the night after my due date I felt some contractions, then they went away.  I wondered if this would be it.  With that in mind, I didn't eat much (I knew I would just throw it all up).  I went to bed but woke up a few hours later with more contractions.  I laid in bed for half an hour to see if they would go away; they didn't.  I got up and decided to grade some tests I had brought home; after all, if I was having the baby I didn't want to leave them with the sub!  They were a great distraction for me, because they took several hours to do, especially with having to get up and take breaks.  Russell came out around 4 in the morning asking what I was doing- I told him I was having contractions and to go back to sleep.  At 5:30 I couldn't handle it anymore.  I got him up, told him to get ready, get Luke up and ready, and take him to the sitter, then come back and get me and take me to the hospital.  We got to the hospital around 7:30,  I was dilated 8 centimeters this time, and we had a 6 pound 10 ounce baby boy about an hour later.  Again, (obviously) no epidural.

I wanted this experience again, seeing as I had to give birth.  My recoveries were so much faster, there was little intervention, and it just all went so well.  I just wanted SOMETHING about this pregnancy to go the way I wanted, and now it probably wouldn't.  I'd probably have to have surgery, and if that was the case my hospital stay and total recovery time would be significantly longer, not to mention the fact that a needle in my spine would be a guarantee.  I was ok with the fact that more people would be present due to Ally's condition (when you're in that much pain you just don't care; I wouldn't have cared if my students had been in the room and seen every gory detail) but I just wanted as little interference as possible.  I didn't even like the idea of being induced, (which I was informed would probably be the alternative) but would take that over the c-section any day.  I am still mourning this possibility but I know that if this is what's best, I will get through it and it will all be ok in the end; the goal is always a healthy baby and safe delivery and if this is what it takes, then so be it.

A c-section is not a guarantee, it depends on the head growth and when I deliver.  If she has to come early (which obviously I don't want) then a natural delivery (though possibly induced) may be possible.  Or, if her head growth stabilizes and I deliver at term (which will be 39 weeks, I don't believe they will let me get to 40 weeks at this point) it may be possible to have a natural (induced) delivery instead of a c-section.  At this point, this is the option I am hoping for, because in the long run it is best for both of us.  Needless to say, the doctor will be keeping a close eye on the head size at all subsequent appointments.

The other thing we learned at this appointment was that there were still questions about genetics and what is 'causing' the Dandy-Walker.  Having the amniocentesis could give us some answers about them, or at least rule out some possibilities.  Apparently there is a new technology called a SNP Array that looks not just at each chromosome of the baby, but individual parts of each chromosome that can tell about conditions and issues a baby may have.  This would also allow a retest of the tests from the blood work at the last MFM appointment to give definite answers about genetics and infection, though the doctor did say that while the liver spots were still there, they had not changed and were probably nothing.  While having the amniocentesis is still optional, it may give us some clues about what is going on and better prepare us for Ally's birth and what to expect later.  

We left the appointment at 6:45, more than 3 hours after we got there.  We really appreciate the time our doctor and genetic counselor takes with us, her patience (we had a TON of questions, some that we came in with and some that popped up with the new results, which is why we took so long), and her intuition, since much of the information is not set in stone but based on her experiences and her gut (which I have come to trust very much).  We are waiting to hear from her office next week to make our next appointment and to schedule the amniocentesis, since we believe that more answers sooner will be better for Ally in the long run than waiting until after she is born.

January 2nd, 2014- The Echocardiogram

The doctor at MFM put in a recommendation for Ally to have a fetal echocardiogram.  She said she didn't see anything of particular concern about the heart, but since the heart is kinda an important organ it would be best to have it examined more closely by a specialist.

I left school at 2:00 for my appointment at 3:00.  After I was taken back, the sonographer had me go through the usual routine of shirt up, towel tucked, gooped, and machine on the belly.  She actually went directly to the heart on the initial contact and was able to get good pictures of what she needed.  She told me the doctor who would be examining me liked to be 'hands on' and take pictures himself but not to let that get me worried that there might be something wrong.

A few minutes later the doctor came in along with what I assumed was a resident.  He looked at the pictures the sonographer had already taken, and sure enough put the machine to my belly for himself and moved it around.  He asked me if there had been any concerns about the baby's heart.  I told him no, that the baby had been diagnosed with Dandy-Walker.  I then had to go through and explain to him and the resident what that was.  I also told him about the liver spots that had shown up on the last sonogram at MFM and how they thought it could be infection but the studies had come back showing the probability of that was very low.  The resident looked at me and said, "Wow.  That's amazing that you were able to give us all that information."  

I guess that's a new part of my life now.  I had never heard of Dandy-Walker before December 12th myself, and now my life and the life of someone I love dearly would be profoundly impacted by it.  This is what we do as parents.  It's not amazing- it's what any good parent of a child with any kind of condition should be able to do.  But it was the first acknowledgment of that ability that I now possessed.  It was a strange, yet satisfying feeling, that I was able to adequately advocate for my child.

The doctor told me the heart looked totally normal.  Again, nothing was suspected, this was merely a precautionary test, so I was not surprised (gladly).  But it was again one more hurdle jumped.  The big day would be tomorrow...the next appointment with MFM.