The Road to a Miracle

It's been awhile!
I was just looking at the last post and Miles was such a baby.  Now he is a big kindergartener! 

It's been hard to know what to write about as the hearing issue is now a non-issue and it is hard for me to publicly brag about my family.  But I was inspired by another friend's blog to share my experience.  So here goes.

I posted on the blog about the death of our baby, Izabelle Rhea, stillborn at 24 weeks.  Since then we have had many pregnancies and many losses and I wanted to share my experience to end the silence around baby loss and to provide hope to those who might be going through something similar.

When we were given the green light after Izzy, we got pregnant again and were quietly hopeful.  We did the same prenatal testing that we had done with the other babies and were told at the nuchal translucency that we had a very high risk for Down Syndrome.  We then went ahead with the CVS and the results came back positive. 

What I am about to disclose is not open for comment or debate.  We chose to terminate the pregnancy.  This was not an easy decision for me.  I wanted this baby so very much but I had to think about the effect on the whole family, not just what I wanted.  I knew from experience the amount of doctor time, the therapies, the intervention from a minor disability like Miles'.  I couldn't imagine the chaos that would ensue with a baby with greater disabilities.  And I couldn't face the risk that carrying such a pregnancy might mean- greater chance of stillbirth, greater chance of death during childbirth, greater chance of heart conditions.  And then there was the responsibility I would be asking Miles to take on when Jeff and I die.  So we terminated.  And I grieved.

We decided to take a few months to heal, emotionally and physically, and then try again.  We became pregnant quickly but this time it ended in a miscarriage.

We tried again.  (By this time, I was almost 41.)  All seemed to be going well.  At my 8 week appointment, my doctor didn't find a heartbeat and told me to expect to start bleeding in a week or so.  A week later, nothing was happening and I was just feeling sicker and sicker.  So I called back, went in for a blood test and received some scary news.  The doctor believed it was either ectopic or a molar pregnancy.  I quickly went back and a molar pregnancy was diagnosed.  For those who don't know what a molar pregnancy is, it is when the sperm meets up with an egg that does not have a nucleus.  The sperm then multiplies its own DNA and grows in a grape cluster like fashion.  It can have devastating results.  Once removed, it can grow back in a cancerous form.  Often women of my age are suggested to have hysterectomies.  The doctor who examined me told me that I would never have another baby. 

The surgery was scheduled and the results were good.  I then had to wait one year before I could even think of pregnancy.  Six months later, after reaching a zero HCG without intervention, I did some research and then went to see a fertility specialist about the possibility of another baby.  As I was waiting for her to come into the exam room, I realized it was the anniversary of Izzy's birth.  I was emotional.  After taking a look at my ovaries, she told me there was absolutely no reason I should not be able to have another baby.  She prescribed some progesterone for the last half of my cycle and sent me on my way.  I also decided to start acupuncture again.  I had some set backs- one ectopic pregnancy that was easily taken care of with some methotrexate and two very early miscarriages. 

This post wouldn't be called "Road to a Miracle" if it didn't have a happy ending.  In October of 2011, right after Halloween, we got a positive pregnancy test.  I went in soon for blood tests and then ultrasounds.  I knew not to expect much at 5 weeks but there, on the screen, was a fluttering little heartbeat.  And it was still there at 6 weeks, and 7, and 8.  I was transferred to a regular OB and got some extra screening with the Maternal Fetal Health folks.  Lots of appointments.  Lots of ultrasounds.  I was meeting with the MFH doctor for the first time, when, again, I realized it was Izzy's Day.  We did the AFP and the nuchal translucency.  It came back with 1 in 600 chance of Down Syndrome and 1 in 1000 chance for any other chromosomal abnormality.  Those are excellent for a woman of my age.  We also did an amnio and all came back normal.  Of course, there was drama.  I was diagnosed with gestational diabetes, she was breech until 34 weeks, and I had PUPPS, a horrible pregnancy related rash, that lasted the last three or four months of the pregnancy.  It was all worth it.

Introducing Milagros "Millie" Ziva, born July 28, 2012, one and a half months before I turned 43.  Milagros means miracles and Ziva means brilliance.

Because of my gestational diabetes, the doctors told me they would induce labor if I didn't give birth before her due date.  Though I was having contractions, I ended up being scheduled for induction just as she hit 40 weeks.  I asked if the doctor would start with breaking my amniotic sac to see what would happen and, since I was about 3 cm. dilated already, she did.  Almost immediately I was in full labor mode.  Jeff called my doula and I was laboring in the tub by the time she got there.  Soon I felt like it was time to check how dilated I was.  A nurse checked and I had one more centimeter to go.  They told me not to push but that was incredibly hard to do.  When I got the go-ahead, I tried one push lying on my side but that didn't work for me so they got me up and onto the birthing stool my doula, Sandy, had brought.  Once I was there, with gravity working with me, Milagros came right out.  The labor took three hours from when they broke my water until they pronounced the birth.  6 PM on the dot.

Millie is now 4 and a half months old and a wonderful baby!  She is smiling and laughing.  Miles is a very proud big brother and liking her much more now that she can interact with him.  She's crying less which he also likes.

And Finally...

Some more cute photos and video from the summer:

 

Digging in the Garden

My husband was also productive this summer.  Mostly, he was working on his online program (www.sonicfit.com), a music theory and ear training program, but he also dug up all the ugly stuff in the garden and planted pretty new flowers, an herb garden and tomatoes.  We got a new gas grill and got rid of the small climber that Miles never used anymore.  Miles had a great time getting in on the digging.

The Summer of Ignored Promises and Other Ways of Being Productive

At the beginning of the summer, I swore that I would make full usage of my gym membership, blog more and get back to my love of cooking.  Well, I did none of those things and yet I feel like the summer was a success.  Instead, I got back to my love of rock climbing, cleaned out our garage and did a lot of bodywork (acupuncture and massage).

Miles was also a terrific reminder of so many fun things that I had put to the side when I got married and had a kid.  He saw a video of scuba divers and wanted so much to be able to do that.  I told him that he was too young as of now (he's not even really swimming yet) but that we would get some snorkeling equipment and he could do that.  Getting him his own equipment inspired me to get out my old scuba gear.  I showed him how to swim down with the snorkel and clear out his breathing tube.  He really took to it and is very comfortable floating with his face in the water, breathing through the snorkel.

He has also shown interest in rock climbing.  When we go anywhere that has an easily climbable rock, he is quick to want to scramble up.  So I made plans with a rock climbing friend to take him to the gym and give him his first experience with all the gear.  I'm really excited!  I hope he loves it!

We had our first camping expedition to Big Basin Redwood State Park.  Miles has been wanting to go camping since he first read "Fred and Ted Go Camping" over a year ago.  We planned just one night so that if he liked it, we would leave him wanting more and, if he didn't like it, we wouldn't be tortured by an unhappy child.  The results were fantastic.  While he really didn't like the windy drive to the park, he loved the whole camping experience, including hiking/biking the trails, making a campfire, toasting marshmallows and wearing glow sticks at night.  We are planning to go again before the summer is over, maybe even bringing along a friend and his family.

As we got to the park and were heading to the park headquarters to check in, something prompted Miles to say, "Mommy, I love you so much."  Of course, I told him how much I loved him.  This interchange was overheard by a woman walking by who turned and said, "Oh, that is so cute!"  I could only nod my head.  That's my boy.

Final Placement!

Since I have been so remiss with posting, I see that I never mentioned Miles' IEP meeting with our school district.  After all the assessments, which took forever to get done as everyone was on summer vacation, I got a phone call from the Special Ed. department letting me know that Miles was not going qualify for going to the county's hard of hearing preschool program.  This was a moment of both joy and panic as it meant that he was doing so well that he didn't need the program but it also meant that we now had to scramble to find a preschool for him.  Luckily, we were able to find a local program that we liked.  We had to take three days a week until they had a full time spot open up but we were able to coordinate with our daycare provider from the year before.

The IEP meeting caused me no end of stress as it started with the determination of whether or not he even qualified for special ed. services.  In my mind, I was screaming, "WHAT?!? Do you not see the hearing aids he wears in his ears???  Do you think we do this for fun???"  But finally someone said that he would not be able to meet his full potential without support, so he qualified.  Then the director told me that to receive speech services through the district, we would have to bring him to the school during school hours.

"Do you not understand that we are both teachers?  How are we supposed to do that?"

Happily, the speech therapist that would be working with Miles said that she would arrange a way to come to his preschool to work with him there.  And she has.  Miles loves her and has made enormous progress.

While I'm pleased with how things turned out, I'm annoyed that they couldn't work out the details any earlier.  When the whole process began, we asked that decisions be made earlier rather than later as Jeff and I had to be able to hit the ground running once the school year began.

All in all, Miles is thrilled with his new school, he is making lots of hearing friends and is doing great!

Been so long...

A friend commented that I've been off the blogging wagon.  True enough.
I originally started this a blog to talk about the issues of raising a child who is hard of hearing but Miles has made such progress that it is almost a non-issue.

That is, if you don't count the trips to the audiologist, the worry over ear wax and ear infections, IEP's and inattentive Special Ed Departments.  But, really, it has been smooth sailing.  Miles is starting to be very aware of pronouncing his "s" sound and is working so hard.  He is almost 95% intelligible by strangers and his vocabulary is coming along nicely.

So I guess now I get to turn this into another blog about how wonderful my family is.

I have been surprised by how much of a boy Miles is turning into.  These days, he is all about setting things on fire and putting them out, making things explode and shoot out.  We recently went to a birthday party at Pump It Up (a party venue that has inflatable jumpy houses, slides and other entertainment.)  While the girls were all about the slides, the boys were all about these air cannons that were there.  The cannons were air powered and shot out these Nerf type balls that wouldn't cause any damage if one were hit.  Miles would have spent the entire two hours in there.  We finally convinced him to give the slides a try and, after some trepidation, he was hooked.

He is also all about the roller coasters.  We went to Disneyland this spring and he made his mama's heart sing by taking quickly to the "big" roller coasters.  Now that he is 40 inches tall, he can ride on Thunder Mountain and Space Mountain.  He had no fear.  I was amused to see that it was rides like Roger Rabbit that freaked him out.

But he is also his daddy's boy.  We went to see Jeff conduct a local choir recently and it was the first time in awhile that Miles got to see his daddy in action.  Miles was really impressed and surprised me by being a great audience member through a full hour of performance.  When we got home, he wanted me to conduct him singing and then wanted to switch roles.  When Jeff arrived home, Miles wanted to try on Jeff's tuxedo.

My Most Wonderful Husband

Right around the Fourth of July, Jeff was going to take Miles to the farmer's market.  As they got ready to go, Miles pulled out his hearing aids, telling Jeff, "I want to be like you, I want to be like you." 

Hearing this just about broke my heart.  But Jeff didn't skip a beat.

"You are just like me.  You look just like me.  You love music like I do.  You have blond hair like I do.  But I wear glasses and you wear hearing aids."

I love that man more and more each day.