The Ultrasound...

I called the doctor's office up when they opened. They told me to come in so they could do an ultrasound.
I told the nice old lady that set-up the appointments what had happened that morning.

She felt awful. She instructed me to write the conversation down and send in a note to the office. She said the lady should be reprimanded.

I went through the ultrasound. The heart was beating. They did kick counts and asked me if I was feeling the kicking. I felt about 3/4 of the kicks. Of course. Of course she started kicking during the appointment.

I felt silly.

I went home thankful that the news wasn't traumatic.

I then sat down and wrote down my thoughts regarding the lady I talked to on the phone that morning. You remember, Dr. Jerkface, don't you? I hoped she would be reprimanded or asked not to talk to mothers on the phone anymore.

I'm just hopeful that they put someone on the phone with compassion. The last thing any mother wants to hear is someone as insensitive as that woman was.

After sending off the letter, I focused my attention on my meeting with the NICU doctor.

The First Scare....

As the week went on, I felt confident. As confident as could be, given the situation.

Then, it started. Lack of movement.

Oh no, is she still alive? Is my baby moving? I did the typical drink OJ and lay down ordeal.

Nothing.

Wait, maybe there is a flutter. No. Could it be? Okay, I'll wait and see what happens.

I waited. I was afraid I was in panic mode because it was the big 28 week mark. I waited until the next day.

Tuesday.

I called into the doctor's office. It was before office hours. I got the nurse/doctor on call. I told her my name and birthdate. She asked what the problem was.

"I haven't felt my baby move for two days."

"So what you are saying," she snickered, "is that instead of feeling your baby move a million time it has only been 100,000 times?" 

 "Um, no, I might have felt her move once in the last two days. The doctor told me to call when the movement has decreased. I don't feel her too much to begin with. There is a lot more going on then just a baby that I haven't felt. I'm not an idiot. Can you go and get my chart?"

"We don't have charts here where I am." 

After telling her that I feel she was very rude and she shouldn't talk to people the way she just did to me, I end up telling her a bit of the history. I don't go into detail. I was crying. She was rude and I just wanted to hang up the phone. I shouldn't have called.

I should have waited until the office opened. I wanted support. I wanted someone to tell me that it was going to be okay. I wanted someone to tell me that I didn't have a dead baby floating inside of me. I wanted to know my baby was okay.

Instead, this is what I got:

"Can you wait until the office opens? If not, I GUESS you can come in to triage."

"I guess I can wait."

By the end of the conversation, I had about 30 minutes until the office opened. I didn't want to go in and have this rude lady do anything with me!

For the next 30 minutes, I paced around the house. I rubbed my belly a little and said wake-up!

I pleaded with her. Move, just move. Don't die on me. Mommy loves you. Just let me meet you. You're almost there! You've almost made it. Don't give up!

I prayed. I got angry. This is too much. I'm not sure I can take much more. I have no one to talk to. I'm going through this alone. No one in my family knows what I'm going through.

I weep on the kitchen floor. Please don't die. Please don't die.

I start crying. I didn't want to explain to her everything that had been going on.

I think they must train you on how to be rude and crude to people when you are going to school to be in the medical profession, I thought!

The Next Ultrasound...

I had appointments, non-stress tests, and ultrasounds fairly regularly. The next ultrasound was around 28 weeks along.

The baby passed the ultrasound requirements, was not in any sort of jeopardy at this point. The doctor asked what the next steps would be if they showed any sort of stress on the baby. What actions would I take?

I asked the doctor if it were a normal baby what would the steps be? He said that they would take the baby as soon as their was any stress. I told him then that is what I want you to do if you notice any sort of stress on the baby.

He seemed shocked. He nodded his head. He told me that if I feel any lack of movement to call their office right away to be seen.

After leaving, I had to go directly to an OB appointment. I was given the medical records.

I stood in the hallway and thought, yep, I'm looking at them. They are my medical records, why not!

One line stood out, it went something like this:

"We have not been able to detect the previous dandy walker variant that was previously noted in ultrasound."

No one told me this information. This was big. This gave me a small glimmer of hope.

Have Faith. Have faith, I thought.

I went over to the appointment and started my one millionth non-stress test. I exaggerate, slightly.

All was okay so they would see me in a week.

It was the 28 week mark. My emotions were on high alert. This was the week they told me my baby wouldn't make it.

Would I last for a whole week? Only time would tell.

Appointments Galore...

The OB office finally caught on to what was happening.

My next appointment was with a doctor, we'll call him Mr. Jerkface.

I brought Sadie in with me.

We were just at the pool and I like to be safe (notice the common theme here) so I had put sunscreen on her head. She really didn't have much hair on her head. The hair that was there was very fine. I didn't want her to burn.

I lost track of time so we ended up rushing to leave just so I could get to the appointment on time. I didn't have time to give her a bath, only time to change her out of her wet clothes.

I figured we were going right home afterwards and I would be able to clean her up then.

The doctor asked me if I was okay. I said I was. At that moment in time, I actually was.

He then asked me if grease was in Sadie's hair. He seemed concerned. I was irritated. No, I actually give my child regular baths. Thank you, though, Dr. Jerkface for actually pointing this out to me. This is when I should have known that he was a real piece of work.

I told him that it was sunscreen because we had just come from the pool. He seemed relieved.

He went on:

"Have you changed your mind about going to Colorado or Kentucky and having an abortion?"

 "No."

"You do realize that this fetus has multiple anomalies and won't survive past 28 weeks."

"Yes."

"Your quality of life and that of the fetus will not be good even if it does survive."

"Okay."

"Okay, you've had a c-section with your first. The outcome will be the same either way. The fetus is not compatible with life. Whether you have a c-section or whether you deliver vaginally."

"Okay."

"When you go into labor, we aren't going to stop it. You will then deliver vaginally."

"Okay."

"Do you have any questions for me?"

 "No." (I was wondering how he could be so insensitive. I didn't ask that question though! I wanted to get out of that appointment as quickly as possible.)

"Okay, you will be seen regularly now for the duration of the pregnancy. See the girls outside for your upcoming appointments."

"Okay, thank you."

 I made my appointments and left.

Genetic Counseling

It was time for the genetic couseling appointment.

The only reason I looked forward to this appointment is so that I could know if this was something that could have been passed on from myself or my husband, Scott. Without either of us knowing.

We waited in the waiting area until we were called back.

When something like this happens, you gain a whole new perspective on things.

Have you ever had a boyfriend or someone you cared about with a certain car, say a Jeep. All of a sudden, you are noticing Jeep after Jeep after Jeep driving by. The Jeeps have probably been passing you by all along but your world didn't have any sort of need or focus on the Jeeps until now.

That is basically what happened at this visit. The genetic counseling was inside the hospital, right at the entrance to the birthing center.

There were women coming in happy, women leaving the triage in tears, and women leaving the perinatalogist's office with fear and tears in their eyes. Many times in this hospital I have focused on the happy times, the happy couples, the crying babies leaving with the exhausted mother.

This time, I noticed crying, fear, sadness. So many people dealing with heartache, loss, and fear. Fear of the unknown? Maybe. Fear of what is known? Perhaps.

They finally called us back. We filled out a ton of sheets. I realized that there are so many defects, diseases, and problems in our history during this appointment that I start getting concerned for Sadie!

After filling out the paperwork, they sit us down. It's a nice and comfy couch. She pulls over the tissue box. Well, that can't be a good sign!

She tells us that it is a difficult time for us. I'm glad she is aware.

She tells us that the quality of life for 'this fetus' will not be good, if it makes it past 28 weeks. She suggested going to Colorado or Kentucky which offers late-term abortions. She said that our life will change considerably. She said that 'the fetus' will be a "bump on a log".

She told us to think about our options. I told her 'no' to abortion. She again reiterated the quality of life for 'the fetus' will not be good.

I told her that it wasn't up to me to decide what would happen. If it goes according to the doctor and the counselor, the baby will die shortly anyways. One thing I did know, it was not up to me to decide the fate of the baby.

We left the appointment without really saying a word to each other. We focused our attention on Sadie.

She is our world.

That night, she lifted up my shirt and said, night baby. Scott and I looked at each other. I teared up. He teared up. I pretended to be her baby sister and said 'good night' (as we have been doing every time she kisses baby).

That.Was.Hard.

My voice cracked as I pretended to be her sister. Scott took Sadie and put her to bed. He knew I needed time alone.

I curled up in the fetal position and sobbed. How will I tell my baby about the baby the won't make it? She didn't deserve this. She deserved a sister to play with. A sister to have fun with. She deserved the world. I couldn't give it to her.

She didn't deserve to mourn a sister.

OBGYN Disaster....

The next OBGYN appointment was a disaster.

I went in, she checked the heartbeat. She found it, thankfully! My blood pressure was fine but on the lower side.

She then went over the test of the amniotic fluid. This is what she said,

"It looks like you are having a girl. The rest of the test was negative. So, the baby is okay!"

I was confused. I told her that the other test came back with the abnormal cells. She said,

"No, I have the test right here and everything came back fine so you are all good."

I left it alone. I knew she wasn't right. I didn't get my hopes up. I was just too tired to push her to correct her information. She'll find out, I thought. I left.

I left wondering why there are those that do drugs, eat and drink whatever they want and their baby seems perfectly normal. I must need to learn something, I thought. But what.

The next appointment was the genetic counseling.

The Next Four Days...

The next four days were similar to the first three, minus that 5 minutes of energy from the first phone call.

I remember talking to my sister and she said that maybe the doctors are wrong. Maybe they don't know what they are talking about. I told her that I hoped they weren't right. I was in my kitchen. In the dark. Pacing.

There was still plenty of crying. Still plenty of praying.

There was also a glimmer of hope. Maybe we'd be able to see our baby, at least for a few minutes. Just to tell the baby we loved her.

I kept repeating the doctor's words over and over in my mind: the fetus. He didn't even say 'baby'. This was my baby not some sort of inanimate object. MY BABY he was talking about.

They say there are stages a person goes through with bad news. I went through the questioning, the depression, the anger.

In all of this, with the lack of movement, I was now also wondering every day....is the baby still alive?

I finally received the next call I was waiting for. It was the nurse again. She said that the test results were in and the baby, which was a girl, had Mosaic Trisomy 22. Nine out of the 15 cells tested in the amniotic fluid had an additional chromosome 22. Six of the fifteen cells were normal.

They explained the process of the cells splitting and said that with the amount of anomalies the fetus has, with this rare genetic defect, they repeated that it is not compatible with life. They made sure I remembered my appointment for genetic counseling.

I hung up the phone. I started to cry, again. Again asking why. I had to call Scott. I called my mom. I sat and cried.

What did I do wrong? Was it the odor from the entertainment center? Was it the exercising? The cleaning fluid at the gym? What did I do? Why was this happening?

Why?

The Phone Call...

After three days of praying the dreaded phone call came. Just writing these posts have brought back the many emotions I experienced during those three days and beyond.

This was a very trying time. I sunk into a sort of depression and didn't really want to talk to anyone about any of the details. I don't cry in front of people. That would show weakness, I thought.

So, I tried to stay at home. With Sadie. Playing with her. Trying to keep my mind off of the phone call. It didn't work, but I tried.

I answered the phone. I knew it was the doctor's office. The nurse told me that the tests had come back negative for the three main things they looked for: Trisomy 13, Trisomy 18, and Down Syndrome. They still were waiting for the more thorough test and reiterated that the prognosis is not good. They still thought that whatever was happening, it was not compatible with life.

They want to set-up an appointment with the genetic counselors. Oh joy. This would be the first of many appointments in the next few months.

I called my family. I told them the news. Actually, I just called my mom and she passed the information down the line. I had a tiny bit of excitement knowing those three things were now off of the table. I got down on my knees and thanked God. I didn't know what the next test would show but I was determined to continue to pray and ask for healing, a miracle, anything to keep my baby alive.

The Next Three Days....

The next few days were like we were living in a tunnel. Our world had stopped but others kept zooming by.

I cried for days. Sadie was a year and a half and kept us laughing but in the down time or even in conversation with Scott I would ask,

"What are we going to do?"

I would start to cry. An ugly cry. A cry that was uncontrollable. My head hurt constantly.

Scott did end up calling my family. My mom didn't believe him and thought he was joking. He said it wasn't a joke, with tears in his eyes. I sat beside him watching, crying. This was no joke. This was real. This was our life.

Scott's family emailed back and said they were sorry that we were going through this. His parents were supposed to come down the weekend after Memorial Day Weekend. They asked if they should still come down. We said they should.

This put everything in perspective for us. We were going to lose a child that we had grown to love, that we planned a future for, that was still growing inside of me.

 We would have to plan a funeral. A funeral for our baby we hadn't even met yet.

They put a rush on the test. We were supposed to hear something in three days. 7 days for the more thorough test.

During those three days, we prayed. We prayed and hoped the doctors were wrong. We asked him to heal our baby. We asked him to give us the faith we needed to continue on with life. To be strong for Sadie.

We prayed a lot. We cried a lot. I can't really remember a time in those three days that I wasn't tearing up.

We waited for the phone call knowing it was in God's hands.

We enjoyed Sadie and all the laughter she brought us. She was our ray of light. Our hope for the future.

The Perinatal Appointment

It was a beautiful day in May. The week before Memorial Day Weekend. We went to our prescheduled appointment with Dr. Smith*. He is a pretty well known individual and pretty much the only prenatal doctor in the area, or so we were told.

Before the appointment, I did have concerns about the safety of the baby, but figured it was just my paranoia. I would say to my husband, “Something isn’t right. Why can’t I feel the baby moving as much as Sadie?” He would say that I was paranoid and everything was okay. He was probably right.

We entered the appointment thinking about whether or not we were going to find out the sex of the baby. We were happy, ecstatic even, because we were going to be able to see the baby during the ultrasound. Scott, my husband told me that we were NOT going to tell anyone the sex of the baby.  This was our only concern at the moment. Little did we know that things would turn upside down in a matter of minutes.

The ultrasound started. The ultrasound technician asked the usual questions.

“Would you like to find out the sex of the baby?”

“Yes.”

The ultrasound continued with some small talk and then after a few minutes the technician became pretty quiet. She started asking questions again after a while:

“Have you experienced any unusual sickness during your pregnancy?”

“No.”

“Have you felt your baby moving normally?”

“Well, I just started feeling movement in the last two weeks.”

Silence, again. More pictures taken.

“Okay, the doctor will take a look at the pictures and then will be right in.”

“Okay, thank you.”

We waited a long time, it seemed. I had an uneasy feeling. I told my husband that something wasn’t right. Again, he said I was crazy.

The doctor came in, took more pictures and asked questions:

“Have you smoked during your pregnancy?”

“No.”

“Have you used alcohol during your prenancy?”

“No.”

“Have you used any prescription drugs or recreational drugs during your pregnancy?”

“No.”

“Okay, I’m going to go and look at the pictures that I just took and will be right back in.”
“Okay.”

We waited for what seemed like a long time. I looked over at my husband when the doctor left and said, SOMETHING ISN’T RIGHT! He said, “it’s fine, dear.” I tell him that it isn’t fine because I have never sat through an appointment where someone treated me like I did something wrong during the pregnancy. It isn’t fine, I thought. It’s not fine. I sat looking at a black screen saying over and over, It isn’t fine. I knew all along that it wasn’t fine. I tried staying strong for Sadie’s sake.

Finally, the doctor came in.

“I’m just going to lay it all out and not sugar coat anything. The fetus has multiple anomalies that are not compatible with life.”

“Okay.” *blink, blink*

“The fetus has what is considered a dandy walker variant which is excess fluid in the brain. The fetus is missing a kidney, has a hole in the heart, and is measuring at 21 weeks instead of 24. We do not believe that the fetus has down syndrome. Generally, the head and body are not comparable in size. In this case, the fetus has a body and head matching the same gestational week. We feel that the fetus has trisomy 18 or 13 which, again, is not compatible with life. We do not feel that the fetus will last past 28 weeks gestation.”

“Okay.”

“We believe that at this juncture, it would be wise to have an amniocentesis so that we know what we are dealing with. We can do that right here in our office if you would like. I would just need to get everything ready now.”

“Okay, that is fine.”

The doctor leaves Scott and I alone in the room with Sadie. I have tears running down my cheeks but only a few. I quickly stop them and focus on what we are doing, an amniocentesis.

The doctor comes into the room with everything needed and performs the procedure. He takes the amniotic fluid out and cleans off my belly. We are free to leave.

Free to leave the office but not free of the news we were delivered.

We walked out of the office and I got into my car. Scott had to go back to work but asked me if I was okay and if I wanted him to drive me home. With tears streaming down my face, I tell him that I am fine but asked him to tell my family the news.  He held it together but I could see the pain in his eyes.

“I’ll email your family and let them know.”

He hugs me and tells me he loves me and then leaves us to go to work. At least I think he went to work. He may have gone someplace just to cry alone by himself without me seeing the tears.

I sit there with tears streaming down my face and think: Why? Why me? Why us? Why is this happening?

During My Pregnancy: The First Weeks Activities

During my pregnancy, I worked out at the gym..something that would haunt me later on.

I was one of those moms who refuse to eat lunch meat without first warming it up (if I ate any of it in the first place), no mayo because it had raw eggs in it, no hot dogs because of the high nitrates, and so forth. You get the idea.

I don’t do drugs and never have, never drank alcohol during my pregnancy, never put a thing in my mouth that would jeopardize my unborn child.

We found out we were pregnant on January 11th. I knew the exact date of conception: December 26th.

At first, I was completely shocked. Sadie was only 14 months old when we found out we were expecting Faith. I remember telling my husband that I wasn’t ready for another child. I was afraid that I wouldn’t be able to give both kids enough attention and I enjoyed having only one child right now. These words are another thing that haunt me.

During the time before we found out, we bought an entertainment center. It had a smell to it. A strong odor. I constantly made comments to my husband saying I had better not be pregnant because this smells horrible. This entertainment center “smell” is another thing that haunts me.

These are things that I would look back on after my perinatal appointment.

My First 20 Weeks....

I was pregnant with my second child. After the initial shock, I was happy.  The first 20 weeks of my pregnancy were going as planned. I wasn’t really able to feel my daughter move like I did with my first child during the first 18 weeks but all the things I had read said within the first 22 weeks so I thought I was okay. The doctor sent me for an ultrasound with a perinatalogist since I was diagnosed at the age of 22 with spina bifida occulta. This was just a precautionary measure.

Going to a “specialist” in the area meant waiting a while to get into the appointment. I wasn’t too concerned but had my doubts that everything was okay. I reassured myself (and so did my husband) that my first child was “normal” (or as normal as can be) ;-P so the nervous fears during this pregnancy were just that...fears.

I finally had my appointment scheduled while I was in my 24th week, so I waited……