The first week...

Those two hours seemed like a really, really long time! I talked with the nurse in recovery. She informed me that my baby was doing well and her Apgar scores were 5 and 9, so she was doing better than they thought she would. She said that the doctors may have been wrong.

I was ecstatic. I couldn't wait to see her again. 

I was wheeled into the NICU before ending up in my room. She was sitting on the warmer. She was content and so small compared to the receiving blanket that was tucked under her legs and around her body. It was like a little cocoon.

The nurse said she was doing well and wasn't requiring oxygen. I was able to hold her tiny little fingers in mine for a few minutes before they took me to my room, which happened to be on the other side of the hospital. I was told they wanted me to be able to hear the babies crying instead of being close to the NICU since they expected her to pass away. 

When I was able to get out of bed the next morning, I did. I was wheeled down to the NICU where I stayed by my baby's side. I held her, fed her (through a naso-gastric tube aka NG tube). I pumped every 4 hours. 

I didn't have much success with pumping at first but finally my milk came in and I was able to produce enough for Faith.

My visitors were non-existent. Even my husband didn't come in too much because his family was down from out-of-state. If I wasn't in the NICU, I was down in my hospital room by myself. The NICU nurses told me that I have to go and eat my food but I didn't want to. I wanted to be with my baby. I did go down, eventually, to eat my food but the empty room wasn't too inviting! 

They started taking tests on Faith. They did a test on her heart, they did a test to check to make sure she actually had a chromosomal defect, they did an ultrasound on her pelvic area to check the status of her kidneys, and all the other bloodwork that babies need.

The tests started coming back. Back then, all the medical terms were foreign to me. 

She actually had three holes in her heart. They gave her medicine to close up the one hole (which, thankfully, it did its job. We were then down to two holes in her heart. Okay, good.

The pelvic scan came back and instead of only one kidney, she had two kidneys but the left kidney was lower than normal but seemed to be working effectively. When I received this news, I remember that night being able to take a shower. I stood there in the shower and cried. I knew this was a miracle. I thanked God over and over again.

The bloodwork for the chromosomal abnormality came back. 2 out of 100 cells had the abnormality. They confirmed their earlier findings.

They did a scan of her brain. They said she was missing her corpus callosum.

I didn't know what all of this meant. I didn't know what the future would hold. The only thing I knew is that she was here and I loved her with all of my heart!

If before you were born, 

I could have gone to heaven and saw all the beautiful souls, 

I still would have chosen you... 

If God had told me, 

"This soul would one day need extra care and needs", 

I still would have chosen you. 

If he had told me, 
"This soul may make your heart bleed", 
I still would have chosen you. 
If He had told me, 
"This soul would make you question the depth of your faith", 
I still would have chosen you. 
If He had told me, 
"This soul would make tears flow from your eyes that could fill a river", 
I still would have chosen you. 
If He had told me, 
"This soul may one day make you witness overbearing suffering", 
I still would have chosen you. 
If he had told me,
"All that you know to be normal would drastically change", 

I still would have chosen you. 

Of course, even though I would have chosen you, 

I know it was God who chose me for you.... 

By Terri Banish.

The Delivery

Once I was in the operating room, they gave me a spinal tap, laid me down, strapped me down, put a blood pressure cuff on and the pulsing red oxygen saturation monitor on my finger. This is it.

I lay there looking up at the ceiling, praying. It's as if it happened yesterday. The memories are so vivid. I remember the bright lights, the bed, the NICU team around the warmer to my left ready to act once Faith was delivered. You can hear my heart rate in the background almost trying to lure me out of the haze I was in. It's faint and almost brings a little bit of calm to me. Beep, beep, beep, beep, beep. 

The nurse behind me asks how I'm doing. They start talking to me now. I'm sure my blood pressure is rising at this point. They are trying to keep me as calm as can be.

There was lots of tugging. They tell me she is almost out. The doctor says the umbilical cord is wrapped around her neck twice. She's out.

Scott is videotaping. They bring her over to the warmer. I look over as they walk by with her. She is tiny and  limp. Scott stops videotaping as they start working on her.

I close my eyes so tight and start praying. Please, please let me hold her before she dies. Let me hear her cry. Please God, if only for a little while. Please.

All of those fears of raising a child with special needs, they vanish. I don't care what I have to do but I will do it. I love her. 

It was an intense few minutes that seemed like an eternity. All was quiet. The only noise was the NICU doctor saying, 'come on baby'.

I hear a muffled cry. A MUFFLED CRY is still a CRY! I hear another one, this time louder than the first.

I close my eyes, again. This time to thank God for letting her cry, for letting me hear her voice.

Tears continue to roll down my face. 3 lbs 9.8 oz. 15 1/2 inches long. So tiny, but not the 2 lbs they said she was the day before! 

They finish putting me "back together" and for the first time before leaving the operating room, they let me hold her. She is the only child I was able to hold in the operating room. I am so thankful for that time. I am able to kiss her and tell her how much mommy loves her and how proud I am of her for fighting. 

They tell me that they can hear a murmur when listening to her heart but her color is good, and she has a cleft palate and asked if I knew about that (we didn't). She is currently on a little bit of oxygen but say it might just be a transitional thing.

They take her back and put her in the warmer so she can travel to the NICU. I tell Scott not to worry about me. I tell him to go with Faith and make sure he goes out and tells the family she is okay.

I leave the operating room and travel to the recovery room with a sense of peace. I was cautiously optimistic.  For some reason, deep down inside, I knew she was going to be okay. At least for now.

It would be another two hours before traveling to see her again. 

The doctors say she will die shortly after birth. Prove the doctors wrong, my little one. Prove them wrong. Mommy is routing for you! You are already my little miracle baby. I love you so much!

The next day...

All was well. I only had a few more weeks to go. I hit my 36 week mark.

I was enjoying time with Sadie. We were playing outside, cooking inside, and then Mama had to rest! So, we sit down on the couch.

Sadie thought it was fun to jump over my feet. She did this for a while and then would sit down on them and I would lift her up, pretending I was some piece of heavy equipment. She would laugh. It was a great memory.

Then, she came up on the couch and went beside me. I gave her a hug and kiss and then she jumped, unexpectedly, I think to try to make it over my belly like she was doing with my feet. A much larger expanse to travel! She ended up falling on my belly and her elbow came down really hard into my abdomen. It hurt. I started getting lightheaded and nauseous. Maybe it was just a coincidence.

I call my sister and my mom. I tell them what happened. They say to call the doctor just to be on the safe side and see what they say. Okay.

I call the doctor. They tell me I am to go directly to triage. Wonderful.

I have lots of mixed emotions here.

I am tired of going to the doctors but, since it is 36 weeks along, maybe they will tell me they want to deliver her. Then, I get to see her. But, what if it is too early. What if she isn't ready. What if by delivering her the chances of her surviving the ordeal is less and less.

So, what do I do?

I pray. It is all I can do. (I know some don't pray, and that is fine (I just hope I am not offending anyone) but for me, it is all I know how to do in stressful situations).

I pray that God will help the doctors decide what to do in the situation. I asked that I wouldn't have to decide and the doctors would just tell me what they have to do.

I organized childcare for Sadie, told Scott where I was heading, my sister came and took me to the hospital.

I arrived at the hospital where they hooked me up to monitors. I then find out that with any belly trauma they are supposed to monitor me for at least four hours. Um, what?!?!?! There have been studies that show that it takes up to four hours for the placenta to tear away from the wall of the uterus. So, I wait. I stay positive.

Four hours is a LONG time! I go in around three in the afternoon. I can never find anything on TV when I'm in a hospital. Maybe it is nerves or stress, I don't know.

The first hour comes and goes. I'm only allowed one person in the room at a time. So, my mom and sister take turns coming in. After awhile they say that Sadie can come in with my mom. The second hour passes and Scott shows up. Nice for him to finally show up! We discuss our plans for the night. I tell him that I have a feeling we aren't leaving this hospital with me pregnant. He snickers and tells me I have no idea what I'm talking about because he was expecting to go to the local market. Well, we'll see, I say.

The third hour passes. We go to three and a half hours. The doctor I've had says that a new doctor will be taking over and then I will be released.

Alright, only a half hour to go and things are looking good.

Then, her heartbeat starts slowing down. Oh great. It disappears.

Several triage nurses run in and try to find it. Finally, it slowly starts again. That half hour just got extended. She did this "neat" trick two more times.

After the second time of 'no heartbeat' I told Scott to be ready to get all my bags I packed for the hospital when he goes home. It is time. He doesn't believe me (he likes to be in denial a lot of the time).

The doctor comes in and instead of releasing me he lets out a sigh. That is never a good sign!

"Well, I think we are just going to take her tonight. Her heartrate has dropped three times now in the last hour. I'd rather err on the side of caution and take her out now instead of you coming in tomorrow with a dead baby."

I agree. I.AM.ELATED. This is a weird feeling because I should be worried, scared, anxious, fearful, etc etc etc. But, I'm not. I'm at peace knowing that soon my little baby that I've waited so long for will be here. I don't know what that means but at least I can see her on the outside instead of trying to figure out what her little body is doing inside.

At this point, they started pumping me with liquids, making me take stool softeners, and all that good stuff for a c-section. It wasn't until they started having me sign papers for anesthesia that I started worrying. I don't remember anyone telling me all the bad things that anesthesia can do to you, including death. I remember it vividly the second time around.

Each family member came in to wish me luck and to give me a hug and kiss before heading back to the operating room.

It was a long journey through the hallways to the operating room. I kept repeating this over and over.

This is it. This is what I've prayed for. He kept her alive for a reason. This is what I've waited for. This is what I have had to have faith to overcome. I will be able to see my baby girl soon. Please God, let everything be okay.

They opened the doors to the operating room and I knew I couldn't turn back. All the pain, suffering, stress, life altering changes were about to be made. The question remained, will I be able to walk out talking about my baby that is alive or my baby that I need to bury.

Twenty minutes stood between me and the fate of my little baby Faith. Twenty minutes seems like eternity.

 

My last ultrasound

35 weeks, 6 days. This would be the day in which my last ultrasound on Faith was performed. I didn't know it at the time. They told me she was 2 lbs. 3 oz. She was moving fine, just not really growing. But, she was still alive!

I saw her kick. Brought this mama to tears! Sometimes, it's the little things some days that make the biggest impression.

They did the kick counts. They made sure everything was looking okay then sent me on my way. The home stretch. I could finally see her, alive, maybe.

Only 4 more weeks. We can do this. She can do this! I have hope. She is alive!

The Non-Stress Test Scare....

Thirty two weeks came and went. Very Slowly.

We were in the home stretch. Imagine going through the tunnel and everyone is telling me it will only be a short period of time, yet, I still see no light at the end of the tunnel. It's depressing.

The appointments with the OB doctor increase at this point. It feels like I leave the office just to come back the next day.

It's the same thing each time: non-stress test, talk to a doctor, they ask how I'm doing, they talk to Sadie, they ask if I'm feeling movement, they ask if I'm getting contractions yet.

On one rare occasion, I had Dr. Jerkface again. That was a treat. He asked me if she stopped moving yet. Really? Really? The only thing to say to this man, "no, she is still moving jerface." I thought, your mother would be so proud, I am sure.

During the non-stress test (which, I didn't describe this: it's a test that they put two different scanners on to check for movement and check heartbeat), my sister was in the room with me during one of the non-stress tests. This was her first time.

We were talking, usually the tests are pretty boring as you lay there. Then, Faith's heartbest started slowing down. I shifted my weight a bit and pushed on the little "scanners" to maybe try to speed up the heartbeat. Nope. Still slow.

I look over at my sister.

"Hmm, this is weird."

"What is weird?" She asked.

"Her heartbeat slowing down doesn't normally happen during these tests."

"That isn't good!" She said.

Now, randomly, the heartbeat disappears and then comes back. Then, it disappeared completely. The nice old lady I mentioned before that helped me set-up all my appointments came in. She adjusted the little "scanners" and told me to turn to my side. I did. Nothing happened.

She told me she would be right back. She calmly left the room but as soon as she thought she was out of my vision, I saw her run frantically down the hall. Nope, not good. Maybe this is it. Maybe this is her time to go. Maybe I just heard her last heartbeat. Inside, I'm freaking out. I say a quick prayer. Please let her be okay. Please.

Shortly after, the doctor comes in and asks me to lay on my right side (I was laying on my left side at this point). I did as I was told.

After about 15-20 seconds passed and the heartbeat started again. Whew. The doctor seemed like this was normal. The nice lady looked relieved. He told her that sometimes that happens and when you switch sides, it frees the umbilical cord.

What a relief! I'm still in the middle of the tunnel. Darkness all around.

One day, I'll see the light but unfortunately it wasn't today.

Sit Down with the NICU doctor

I passed the 29th week. She made it. I made it.

Each day was stressful. It was a daily struggle just to stay above water. There were several days I had to talk to my minister. He continued to tell me to have Faith. Hold out hope. There was a constant battle within myself to stay strong, stay positive, stay focused and hold on to Faith.

My mind kept wondering if she was alive, if she made it another day. I feared the worst, daily, until I felt her move.

On the worst days, I would just tell her that if she was going to die, I wanted her to do it now. Don't wait. I didn't want to go through another day praying she was okay, worrying she was okay, staying hopeful she would make it and then at the last minute have her pass on me.

I felt alone. Scott was going through the same ordeal but he wasn't carrying her. He didn't understand how emotional it was. Every day.

Some days, I would feel her move early in the morning. Those were good days. Other days, either she would wait until the late afternoon, early evening. They were the worst days, emotionally.

Don't get me wrong, I wanted this baby more than anything in the world but the emotional toll this was having on me wasn't good. I tried to stay positive but this was the longest, most painful, six weeks I have ever had to endure. It was awful not knowing what was going on inside of my own body.

It was a blessing and a curse at the same time to know at 24 weeks that there were issues.

Some moms I have met didn't even know anything was wrong with their baby until they had him/her. They went through the depression and shock then. I was thankful to be able to deal with the depression, the loss, the shock for weeks before Faith was born. So very thankful.

I was also scared.

I was scared that I wouldn't be able to take care of a child with special needs, if she made it. This wasn't something I ever envisioned. Who does though?

My sister told me that taking care of a special needs child, although hard, is much better than her dying.

I, honestly, wasn't sure.

It was a battle of good versus evil in my mind. I had to tell myself constantly to have faith. I had to stay strong. I had to stay positive. I would repeat this over and over each day and moreso on those not so great emotional days.

The 32nd week came. I sat down with the NICU doctor. We'll call him Dr. NiceGuy. He was, as his 'name' suggests, so nice! He asked me if I was ready. I told him that she wasn't supposed to make it to delivery. He said that she made it this far so we'll just believe she'll make it to delivery. That was the first time I've ever heard someone say that during the last eight weeks. He believed in her. That gave me hope. I believed in her.

He asked me what measures I wanted to take to try to keep her alive during delivery. I told him I wanted him to try everything  for a 'normal' baby. He said that the anomalies they are aware of do not necessitate a higher level NICU so I was able to deliver at that hospital. He said that if there was a more significant issue they weren't aware of, they would then transfer her to a different hospital.

He said that she would be evaluated when she was born. If she needed to be admitted to the NICU, they would make that call then. At this point, they will be the ones in the delivery room when she is born.

It was a short appointment. I left with a postive attitude. Rare.

I did a little pep talk walking out of the hospital with Faith.

"Keep up the good work, babycakes. You will make it! Mommy can't wait to see you!" It won't be long now!

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……