Journal - August 2005

My Journal - August 2005

Thursday – August 4th

17 weeks

We had our second Ultrasound appointment with Dr. Blake today. Today was the day we were going to tell everyone else we were expecting our little baby.

Glenn really wanted to know if we were having a boy or girl. He had me almost convinced. He explained why we needed to know the sex of our little baby. He said, “We are planners and we like things to match, and we would not want a collection of mismatched baby items… so we needed to know.” I did say he had me almost convinced. Glenn asked the Doctor to tell him, boy or girl. The Doctor said there was no way that Glenn could keep that secret. And because he really wanted to know, the agreement was, the Doctor would tell Glenn and he would tell me on Monday, for my birthday. Glenn took a picture of me just before the ultrasound. I loved it the minute I looked at it. I am so happy and it shows in the picture. What do you think????

Our Doctor began the ultrasound and was moving the round-thingy around my belly. We were holding hands and looking at the monitor. Glenn was waiting to find out the sex and I was trying to figure out the body parts. I thought I saw the baby curled into a ball (you know the fetal position) and I thought, our little baby does not want us to know, boy or girl.

That was when Dr. Blake said, “We have a problem”.

I said, “Is the baby hiding the privates?”

He turned off the screen and turned on the lights.

He was VERY compassionate and he explained to us, our baby had a very rare condition called…

“Bilateral Renal Agenesis, No Kidneys”

he could tell by “The Lack of Amniotic Fluid surrounding the Baby”

and the condition is “Incompatible with Life”.

We were absolutely caught of guard. We went from elation to devastation in 30 seconds.

We cried!

We had no idea what to do or think.

What the *&%^ is happening?

What happened next was a blur!!! I remember hearing a few things….

“In order to see the baby on the ultrasound screen we need amniotic fluid and I have very little fluid around the baby.

The fluid is created by the baby after the 12th week.”

He compared our 12 week ultrasound to today’s ultrasound. See Hope's 12 & 17 week ultrasound pictures.

He gave us an easier name… “Potter’s Syndrome or Potter's Sequence” named after the lady who conducted a study many years ago.

He said some other big medical words, I have no idea.

I know we asked him, what happens next?

Am I going to miscarry?

I could possibly miscarry. But, Potter’s babies can live inside the womb, full-term.

But, most babies with a birth defect are a little early.

He also offered the possibility of terminating the pregnancy.

What the $@%& is happening??????

He had us meet with Debra, our genetic counselor before we left the office. I do not remember much.

But, she wrote in my pregnancy notebook.

1/4000 pregnancies

Potters Syndrome

Renal Agenesis = No Kidneys

Oligohydramnios = too little Amniotic Fluid

Playing in my mind, like a record player…

I cannot kill our little baby… we love our little baby… our little baby is going to die… what we will tell everyone when I begin to show… Do we tell them the baby is going to die… Should we keep quiet until after “it” happens… I need some information… I have no questions. The condition seems to be very rare and the Doctor seems somewhat unsure of the details of the condition.

When we walked out of the office I remember feeling so incredibly sad, POOR US.

But, I tried not to cry. Silly Me!!!!!

I was concerned for the Doctor, Counselor and Staff. I thought how hard it must be for them to tell someone such awful news.

One of the office staff said, “I am so sorry.” (I know she meant it)

“It’s okay”, I said, because I had no idea what to say…

When, I began to sob uncontrollably...

I think she must have felt worse.

I still feel bad for her.

Am I crazy to be concerned for their feelings?

We were in shock. We left the office without a picture.

The worst part of the situation was… Glenn and I drove separate cars. The only time we have done this. So we had to drive home alone. It was awful! I was crying so hard, I wish my eyes had wipers!!!

On the way home my cousin Alex paged me XOXO. Perfect timing!!! How does he know???

SIDEBAR: Last year on this exact day... I was buying a plane ticket to Seattle to see Alex's mom (my mom's sister), My Aunt Pat, in the hospital. She had cancer and we lost her a few weeks later. I spent my birthday with her and the rest of my family in the hospital. I miss her... I remember, she told me she "would be proud to have me for her daughter". I wish she were here to know I was pregnant. But, maybe she does know... and she is going to take good care of our baby. And she is the one who made Alex think of me... and page me XOXO. wow!!!

We came home, got into one car. I began writing the names of our family & friends who knew I was pregnant into my journal. It is about 35 people, not including the kids. How, what and when would we tell everyone?

We were waiting for Dr. Melin’s phone call and did not want to stay home. Dr. Blake said he would call her and so we were expecting her phone call. So we drove to Plaza Bonita and wandered around the shops and we were near the JC Penny’s when she called. We were walking aimlessly during the beginning of the conversation, until Glenn pointed us in the direction of a bench outside of JC Penny’s. We sat down and put the cell phone on speaker.

We talked and we cried with her. We snuggled closer and closer to each other. We were oblivious of anyone around us. We were still in shock and we were heart broken, to say the least. She said we needed time together to discuss our baby’s situation, our feelings and our options. We did ask her a few questions…

Will I miscarry? It is possible.

What exactly does it mean to induce my labor? I remember something about… a drug on the cervix… giving birth naturally… a full little baby… not pieces of a baby… she would not do that… she did not even want to talk about that option… and neither did we. THANK GOD SHE IS OUR DOCTOR!!

We needed to make an appointment to come in to see her next week. And talk more.

My thoughts…

I know, in my heart, I can not end our little baby’s life. But, I still do not completely understand what it means to induce my labor… isn’t that aborting… stopping… terminating the pregnancy?

When do we need to make this decision?

Would my pregnancy go full-term?

How am I going to be pregnant for 5 more months?

Can I do it?

What will I say to everyone at work?

They do not even know I am pregnant…

I hate the fact of anyone gossiping about what is happening to our baby.

I would rather them know the truth from me.

But, I want everyone to be happy for me. Not forget about me and our baby.

I am so incredibly happy I am pregnant… But, I am so heart broken that we will not be able to raise our baby.

What the $%&# is happening?

I have looked at the picture of me many times today. You know… the one we took earlier today…

before the ultrasound… and the horrible news.

I think of all of our hopes and dreams for our little baby.

I think about our life with her/him.

I am so incredibly sad. I already miss our little baby, and I don’t really know her/him yet.

WHY IS THIS HAPPENING?

Saturday – August 6th

2 days later…

My friend Linda called this morning. She offered us her baby’s crib, if we wanted it. I tried to decline graciously, but I began to cry. She had no idea why I was crying and I had to hang up, I think I handed Glenn the phone. I was not ready and certainly did not want to discuss our horrible situation over the phone. I felt so bad for her. She had no idea.

My Mom called a little bit later… Did we want to hang out at Silver Strand Beach today? Oh My Gosh… relaxing at the beach was exactly what I wanted to do. We were out of the house and on our way within the hour. It is kinda a large parking lot, so it wasn’t until we were at the beach… I noticed our family and our friends and their kids. It was a Surprise Birthday Party for ME.

We had a great day. It was great for me… to see everyone. But, not exactly the great day everyone was expecting.

Linda was the first friend I saw… I was crying and I told her what happened. As we talked to everyone else… we told them our sad news. I was so happy to visit and receive hugs and support from everyone. I could have never done this over the phone.

When Becky arrived… It was so hard. She is MY BESTEST FRIEND… I am not sure if she was the hardest to tell, but it was hard!!! She has her little baby in her tummy and we had plans for our babies to grow up together. I guess God has other plans.

I was sad that Mary and Mike and the kids were not there. How am I going to tell them??

Apparently, my sweet, sweet, sweetheart had this surprise party planned for over 3 weeks. After Thursday he was unsure if it should continue. He talked to our families and his final decision was to keep the party. I told him, he made the perfect choice. He knows me so well.

Monday – August 8th

4 days later… My 35th birthday

Glenn and I went to the Del Mar Race Track today. We usually go once during the race season. We bet $2 each, for the first 4 races. Our horses lost races #1 & #2. One of the horses won race #3. We used our winnings to pay for a race at the Santa Rosa Track. The horses we bet to win had my nephew’s names… $2 for “Devin Don’t” and $2 for “Andrew’s Turn”. Andrew’s Turn won us $117. We were ready to go to Miguel’s and meet friends for dinner. When we came home I ordered some “special” gifts for us.

Wednesday – August 10th

18 weeks

We had a full Turkey Birthday dinner with my family! It was so delicious. And best of all we had plenty to bring home, so we would not have to cook for a few days. My baby brother gave me the sweetest birthday card. He is home from college for the summer. He was so excited about being an Uncle. I told him he will be an Uncle… someday.

Thursday – August 11th

This morning I went to work only because I had a study group. Before every one arrived, the girls asked how I was and I started to cry. I told them "I will tell you... when I am ready." I still feel bad, because I wonder if they think... It is something wrong with Glenn and I. When it is all about our baby... that is going to die.

So after the meeting we went to our follow-up appointment with Dr. Melin. (She did not charge us for our co-pay today.) Many of the questions today are because of my research… over the past.

How many Potter’s babies have you delivered? Most people choose to terminate the pregnancy. I remember… It is rare! 1:4000 - 1:10,000 Pregnancies.

Did our baby have no kidney or 1 kidney? We are not sure. Dr. Blake could not identify the internal organs, during the ultrasound.

Did our baby have lungs? We are not sure, but Lungs are the last to develop.

What does she use for Inducing the Labor? Misoprostol - marketed as Cytotec. Why did I ask that question? I have read about this drug and Glenn and I had decided, We can always have another baby… but we can’t have another me. You can read what I read about it… Misoprostol / Cytotec Risks

What is Anencephaly? No formed brain or skull, due to lack of Folic Acid in the early days of pregnancy.

What are Perinatologist and Neonatologist? Perinatologists, also known as maternal-fetal medicine (MFM) specialists, are medical doctors who specialize in high-risk pregnancies, maternal and fetal testing, and fetal therapy. *Dr. Blake is a Perinatologists.

A Neonatologist is a pediatric doctor who specializes in the diagnosis and treatment of disorders in newborns. Neonatologists are usually consultants and work in neonatal intensive care units, providing care for premature infants or those born with infections or other health problems.

How much is the cost of delivery, with our insurance?A Lot!

How much maternity leave do I have? 4 weeks prior to delivery. 6 weeks after delivery? Blah, Blah, Blah... EDD for more info.

Will I still qualify for maternity leave? Yes.

Remember when my pee was darker (July 28th)? Could I have been my body releasing the baby’s toxins too, the amniotic fluid? I don’t think so.

What hospital will I be having the baby? Mercy Hospital.

Does the hospital have a private area, as to not wait with other mothers and babies? You will be on the Maternity floor, but… You will not share a room.

Should I store my blood, in case of emergency? You know, with the blood bank? No.

Will my belly grow to normal size without Amniotic Fluid? (I have not gained a pound yet...) I don’t think so.

Will other babies be able to benefit from organ donation from our baby? Our baby could save another baby! I don’t know.

Will I know when my “Water Breaks” without Amniotic Fluid? I don’t think so.

Will the baby be early? Could I go past my due date? I don’t know. But babies with birth defects tend to be early.

She said we should come into the office anytime, or every other week, to check for our little baby’s heart beat.

What if the baby dies in my womb, no heart beat detected? If the baby dies in your womb, you will probably want to induce labor as soon as possible. No organ or tissue donation would be possible.

I do not want to induce labor, because of the drugs, is there any harm to me if I do not induce labor? If the baby dies, you will probably go into labor within a few days. But if you do not, you will probably want to come in and have the labor induced within a few days. Babies that stay in the womb will begin to deteriorate. The only description for it is… "Mush Baby."

OH MY GOSH! Why is this happening to us?

I would like to remind myself, The answers I wrote above are as I remember them.

When we came home and settled in I resumed my never-ending research on the Internet. At the Doctors office, we remembered hearing something about the lack of Amniotic Fluid causing the baby to have squished facial features and clubbed limbs. To be honest… the worst part of this was not-knowing what our baby would look like. So, I searched for any information I could. I found a few wonderful web sites. I also found a picture of adorable baby “Amanda” and her Mommy’s Pregnancy Journal. I showed Glenn the picture of Amanda, and I know that her sweet face eased our fears. Read about Amanda, she is beautiful. We knew we were doing the right thing. Amanda's Mommy is Kim. And her on-line Diary told me more about what to expect, than I had known. I think I might make a web site too. Maybe?

Tuesday – August 16th

Today…. I began feeling some tiny little bumps or thumps in my lower tummy. I have heard a description of a “fluttering feeling” is the baby kicking/moving. But I am feeling a "thumpity-thump-thump" from the inside out. WOW. I have no idea what it is.

As I said, the research began this past week. I searched and searched the Internet and I ordered 2 books. The bookstores did not have the books I wanted. And up until late last week, we thought I would miscarry. We were so worried that it would happen while I was at work. I have been so nervous to go to work. And I have felt drained during the day. I have fashioned a paperclip into a heart. I have kept it in my hand... all day long, while I teach, or walk through the stores. I poke myself when I feel the tears coming on. I did

read about that in some success magazine, the article was about, not crying at work. I realize now, It is kooky, mostly because, It did not work.

Today began badly. I am still sick and have started all of my mornings sitting in the tub, while taking my shower. It is a different experience washing my hair while sitting down. Brushing my teeth has been tough too. Gagging, dry heaving, coughing every time I brush.

So when I walked into work today it was hard. A few friends noticed something was different about my “energy”. I did feel sick and I was incredibly sad!

What was I going to tell them, the whole story or nothing?

Our “special” package (I ordered on my birthday) came in the mail this afternoon. Glenn was making dinner when I came home, so I was able to wrap it and put in on the bed for him to discover later. He loved Them ALL. And I love him!!! And we will carry these from now on :) you can click on the link to see it or buy it...They are Tokens engraved with the words... (click on the link to see a picture of the token)

When You Hold This... Remember Me

*I am sure we will remember her, no matter what.

Wednesday – August 17th

19 weeks

Today was odd. I found out one of the office girls at work is pregnant and she is 20-21 weeks along. I am happy for her. She had the book, "The Girlfriends Guide to Pregnancy" on her desk. I said, (without thinking of course)... "that is a good book."

She agreed. And I walked away thinking "Oh My Gosh".... Maybe she will just think I read it for my book club. I want people to be happy for me too. Although it is hard for them to be happy for me, when they have no idea I am pregnant. Maybe I will tell people at work the situation. I am waiting for my books, “Empty Cradle, Broken Heart” and “A Silent Sorrow” to arrive. I do not want to cause myself more grief. I do want to help friends understand. Everyone at work has asked for so long, “When are you having a baby”. They are all my friends and truly know how much I love children and have wanted them. It is only natural for them to ask. And considering the fact that they see me only when I am in their store, they ask just in case they missed the info. I completely understand. They are all so sweet.

Friday – August 19th

We had our book club to talk about “Little Earthquakes”. How ironic. I read the book and finished it at the end of July. I related to the girls in the book. The story was about their pregnancy and the first year with their babies. (This is where I got the question of inverted nipples). One of the girls lost her baby. Her story was about the strained relationship with her husband and her grief. In the book, she did not even talk to her husband… I knew that was wrong.

Glenn and I talk all the time. I want us to keep our love honest and strong. We need each other to have another baby, right. My belly was very uncomfortable tonight. I was practically laying on the floor, we had a great girls night!!! All my best girlfriends were there, except Jeanne. We missed her.

Monday - August 22nd

Well, I felt sick all morning. I just work through it. The girls in the office asked me today (as everyone does) “When are you having a baby”. I was too quiet, too long. So, I told them our happy news… I’m Pregnant. And I have not said anything because it is High Risk. I felt it would be easier on me. (I have not received my books yet.) I just don’t want to say too much yet. I don’t want people to ignore me or ignore our baby. I want people to be happy for me… because I am happy I’m Pregnant.

So when I came home today, I found out. I became an Auntie again. My new Niece is “Sunny” and she is adorable and she was a little early. I had the opportunity to bottle feed her. She only ate for about 3 minutes. It was sweet, bitter, sweet! She was a tiny 5lbs. I was so excited to hold her and watch a baby so “new to the world” eat. She smelled so good, and I was able examine her tiny little nose, ears, hands and feet. I also realized that eating… is something our baby would never do. I think I realized our baby would not nurse… but, feeding Sunny just made me really understand it. So I tried to get her to wake up and eat some more, but she must have been exhausted from her 3 minute feeding frenzy.

Received one of the books today. I’ll read it before bed.

Tuesday – August 23rd

I read part of the book Last Night. I cried so hard at a poem a Mommy in my very similar situation wrote. At first I just put the book down and cried silently. Glenn was in bed next to me. But then I had to let it out AND let him support me and give him the opportunity to read the poem.

This is about as far as I read the first time… but he read the whole thing…

I wanted so much more for you, my sweet little baby.

I wanted to change your diapers, not my life.

I wanted to nurse you, not my grief.

Glenn read the poem and he told me it was nice. Maybe my emotions had something to do with my feeding “Sunny” a few hours before. Um… YEA!

By the way, as I drove to work today, I had an idea to help other Mommy's & Daddy's like us, I told Glenn about my idea. He liked it too. BUT, I am not ready to share it.

Wednesday – August 24th

20 weeks (1/2 way)

Two of the guys at work ask me today. When Are You Having A Baby? I just said… “Someday.” I had a class, so my mind was kept occupied most of the day.

I have had many “Thumpity-thump-thumps” over the past few days as well. Is that the baby moving? This is so cool !!! I am so glad I am getting to experience the feelings of PURE JOY and EXCITEMENT!

Thursday – August 25th

I have an appointment with Dr. Melin at 11:45 today. Glenn’s Pilot Check Ride was moved to today at 11:00 so my Mom is going with me to my appointment.

"Our Angels" Heart Beat is strong. Full of Life and Love for Everyone around US!

I think I just might begin telling people at work that I am Pregnant. And…That’s it.

BUT, I talked to Dr. Melin about it for the hundreth-time... I asked her opinion, again, "What should we say?" My Mom told her what I have been telling all my close friends and family.....

"We were planning on having a baby, but we are having an Angel instead."

Dr. Melin loved this... But I am still not sure what I will do yet. I am afraid of the gossip and the sad looks I might get for the remainder of my pregnancy. I read about that stuff in my book. I am so happy and so sad.

go to ... SEPTEMBER

find out about... Labor Day... telling my friends at work I am pregnant... and more Q&A with more Doctors.

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LOVE was all she ever knew!!!