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.