XO, Isabel

Hope and Courage: Our Surrogacy Journey

Archives for August 2013

Advocate: Walk of Hope 2013

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Friends and Family will be joining us on this Walk of Hope in Sacramento, CA on September 21st.

If you’re in the area and wish to join, please visit our team page here: Team XO. If you are unable to join but wish to support a great cause, please consider a donation, however small.

Here’s a little more about the Walk of Hope 2013:

RESOLVE’s Walk of Hope is a 1-mile walk that recognizes the many ways in which families are built, supports local support and programs for the 7.3 million women and men living with infertility and raises public understanding of how the disease of infertility impacts families nationwide.

The Walk of Hope is being held in several locations across the country. Funds raised from the Walk support local RESOLVE programming which includes support groups and educational events, public awareness initiatives, and advocacy efforts to ensure family building options are available to all!

The name “Walk of Hope” embodies the emotion that most people living with infertility feel. They are hopeful their dreams of family come true. Some hope to simply find a peaceful resolution to their infertility journey. A Walk of Hope is an event that represents the infertility journey—a series of small steps, each one filled with hope and a reminder that no one should walk on this journey alone.

XO, Isabel

Photo: Empty

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One of the ways I deal with my grief, pain, experience, whatever-you-want-to-call-it is through creative expression. Whether it be with my camera, iPhone or my own hands, I love to create.

This particular image I took the next night after my D&E procedure. I remember I couldn’t sleep. I was tossing and turning until 4:30 am. I took this photo in the dark, because that’s where I felt I was. And after I applied some Instagram filter, it created the image I wanted to depict:
An empty womb.

XO, Isabel

Oh Deer! An animal spirit

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This was just right outside my window at home. We often see this mum with her two bambis.

I posted this image on my Instagram feed as well as on Facebook. And, I received some interesting comments and interpretations on what the presence of these beautiful animals right outside my window could represent. They varied from hope for the future or signs from elsewhere that things are okay.

What I found most interesting were some comments left about the concept of Spirit Animals. I was linked to here and here.

From both articles, I found these words to be comforting:

“When you have the deer as spirit animal, you are highly sensitive and have a strong intuition. By affinity with this animal, you have the power to deal with challenges with grace. You master the art of being both determined and gentle in your approach. The deer totem wisdom imparts those with a special connection with this animal with the ability to be vigilant, move quickly, and trust their instincts to get out the trickiest situations.”

“Deer teaches us to be gentle, to touch the hearts and minds of wounded beings who are in our lives. Don’t push people to change, rather gently nudge them in right direction, with the love that comes from deer. Love and accept people as they are. The balance of true power lays in love and compassion. 

When a Deer totem enters your world, a new innocence and freshness in about to be awakened. New adventures are just around the corner and there will be an opportunity to express the gentle love that will open new doors for you.”

I guess I better get in touch with my inner Shaman.  😉

D&E: What to expect when you’re no longer expecting

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This is my own personal experience, it may or may not be what you’re going to face or what you can expect. It may be difficult to read, please keep this in mind. I am writing this for those just discovering that they’ve had a second trimester pregnancy loss or anyone contemplating having a D&E procedure.

I minimized my great desire to Google search “D&E” or “Dilation and Evacuation” procedures. I knew the basics, it was all I needed to know. I strongly suggest you don’t Google further. You don’t want to know.

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I was given two choices with how to deal with our great loss. They were as follows:

  • – Dilation and Evacuation (D&E) procedure under general anesthesia
  • – Labor induction and delivery

I went with the first option. The second option was only barely whispered to me. I’m sure the pain in my eyes spoke loudly for me. I wanted to move forward. I wanted our Leo out of my body. It was not fair to either of us. The second option seemed incredibly painful for me to imagine. For me, laboring and delivering my dead son would be too much to bare. I want to remember him as he could have been and within the protection of my womb. Not as the tiny little being that he would have been in my hands. I wanted to preserve the sanctity of birth for myself in due time. This may not be what you would choose or would have chosen, but, it was right for me. For us.

Very quickly after we were diagnosed with Fetal Demise at 18 weeks, the attending Perinatologist (Dr. DM) made a call to my then-OBGYN Dr. J. He told her that they didn’t perform the D&E procedure in his office, I also assumed they didn’t perform it in the hospital that I had planned on delivering our son, either. Who knows, I was glad I didn’t have to see Dr. J’s face ever again. They referred me to a Dr. K. Late on Monday, August 12th, someone from her office called me to start preparing me for what to expect. They told me it would be a two-day procedure beginning on Tuesday and the D&E would happen on Wednesday. At the very end of our conversation, she told me that I had the option of having Leo cremated. It, too, was only a fleeting whisper, as she wasn’t sure I wanted to even talk about that. I’m SO very glad that she did, otherwise, nobody would have mentioned it to me at all. I just remember the words Neptune Society.

Tuesday:
Went in for my appointment, I filled out my medical history paperwork and the standard HIPPA notice. I was then given an Ibuprofen pill and a Valium. This was the first time I’ve ever been given Valium. Within about 15 minutes, I was lead-legged and dopey. Whoa. I think I barely listened to anything anyone said to me beyond that. I was then given an exam and had Laminaria sticks inserted into my cervix and was packed with gauze. These are sticks made of seaweed that gently dilate your cervix over several hours and prompt labor. The main purpose of this is to prep your cervix for the D&E procedure. I was given lots of prescriptions for pain medication, antibiotics and medicine to stop heavy bleeding (if needed) for the next day and days. I was given thorough warning on what to expect. I could expect cramping and pain as my cervix began to dilate. Thankfully, I really didn’t have any. I could expect for my breasts to engorge and produce milk in the days proceeding and was given instructions on how to prevent that.

I mostly rested the most of the day. Then, we went to our counseling appointment. It was perfect in timing as we prepared for the D&E the next day. We discussed the option of cremation. We hadn’t really thought about what would happen to Leo if we just left him at the hospital or lab (pathology). We discussed that he would more than likely be discarded as medical waste. I’m glad we had that frank discussion. It was then a no-brainer that we would have him cremated. I could not imagine him just being thrown away. We walked away feeling strong enough to face the next day.

Wednesday:
Thankfully, our procedure was moved up to 9:55 am instead of 1 pm. We walked into the hospital and registered with outpatient surgery. I gave my husband a list of items to do while we were at the hospital, including trying to get paperwork completed for my medical leave. I did this because I know my husband would be sitting in anxiety for well over an hour and I didn’t want to think of him as being in fear for me. I wanted to give him something to occupy his mind.

I was called back and my husband stayed with me the entire time. I had to change into a hospital gown. At first, they had given me a Bair Paws gown, but it proved to be quite itchy for my already-sensitive skin. I was wiling to suck it up, but the nurse offered a regular cloth gown so that I could be comfortable. My vitals were taken and they prepped me for an IV. They took more blood to be tested and then we waited for the doctor to arrive and be walked to the operating room. But, before I forgot, I told the nurse that we wanted our son’s remains to be cremated. And she said, “Oh, there was nothing in your chart. Let me go grab you the paperwork you need to sign.” So, she did, and I signed a document asking for him to be held and be released to a mortuary. This is VERY important if you wish to have your child cremated. ASK! It appears they don’t volunteer this information.

Dr. K was waiting for me, as well as a nurse and the Anesthesiologist. Dr. K is a chipper little thing. I also told her that we wanted Leo cremated, and she told me she was glad I said something, because she didn’t know. She then talked to me some more about my PCOS and got to know me a little bit, even though she had barely met me the day before. She goes on to tell me that she was delivered by Dr. Michael Leventhal, made famous by the discovery of what was at first called Stein-Leventhal Syndrome, later PCOS, later Metabolic Syndrome. I found this fact fascinating and I stopped to think about it for a small little moment before I felt quite heavy with sleep and then I was OUT.

I woke up while being wheeled out to the recovery room. I was having a coughing fit. Someone, I can’t remember, comforted me and told me that the cough was normal and that I’d be okay. I was in some pain, with cramping. I was told this was normal, for they had started giving me Pitocin to help the muscles of the uterus contract and reduce bleeding. Very shortly afterward, Dr. K. came back holding Leo in a container. She told me “I have him.” She went out to speak to my husband while I recovered and eventually was wheeled into my own private recovery room while they continued to administer fluids and Pitocin. My husband was brought into the room to sit with me. I couldn’t be MORE comforted by his presence. The rest is just standard recovery stuff after your procedure. You will have bleeding. You will feel icky. You will feel a little sore. Your throat will hurt. You will be hungry. Most of all, you will feel sad. You will feel empty, as no longer having your 18 week old baby within you will feel like a void. Where your bump once was, it will be drastically reduced in that moment.

It was finally time to be released. My husband went down one last time to try and get my medical leave paperwork signed. And, thankfully, our Perinatologist, Dr. EM was around to personally speak to my husband. He talked to him and gave him a hug. He said that he knew we had lost our son, but he had no idea that the procedure was on this very day. He asked where I was and then he was off after signing the paperwork. I was then sitting waiting for my husband to send me a text that he was downstairs waiting so that I could be wheeled out. Instead, the door flung open and it was Dr. EM! I started to cry the moment I saw him. He sat down with me and talked to me about how sorry he was for my loss. That we would figure this out and we are almost there with “tuning up” my body. That he’s confident that we can do this again and I can have the family I so desire. He gave me a hug. He told me physically the recovery will not take as long as my emotional recovery process. That perhaps I should let the word slip about our loss at work, so that people know. He told me that well-meaning people will say stupid things. WHAT? Naaah! 😉

He stood up and hugged me.

I was wheeled down to the car and my husband drove us home as we both cried.

XO, Isabel

To be a man in grief

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I found this poem online today while reading through some posts on a support forum. I have been trying to find out who to credit, but I can’t find the source. If you happen to know, please leave a comment.

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To Be A Man In Grief

To be a man in grief,
Since “men don’t cry” and “men are strong”,
No tears can bring relief.

It must be very difficult to stand up to the test
and field calls and visitors so she can get some rest.

They always ask if she’s alright and what she’s going through,
But seldom take his hand and ask, “My friend, but how are you?”

He hears her crying in the night and thinks his heart will break.
He dries her tears and comforts her, but “stays strong” for her sake.

It must be very difficult to start each day anew
And try to be so very brave. He lost his child too.

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And, how very true. My husband hears me cry and I can see how helpless he feels. He tells me he feels lost, sad and numb. We do alternate giving each other comfort. It’s just not always easy. We talk to each other a lot, we sit quietly together and enjoy the company of our little bugger of a cat named Immie. She seems to just know that we are sad. She never leaves our side, she puts her paws on our arms or on our faces. She sniffs at the tears on our faces.

I know that my husband is grieving just as deeply as I am. He’s staying as strong as he can be for me.

I have been fortunate to have such an outpouring of support, but I think he feels left out. Very few are texting him to ask him how he is or sending him messages with sentiments about his strength. About his courage. About his bravery. About his loss.

He lost his child, too.

XO, Isabel

A blessing

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Part of my struggle with this experience is to find where my thoughts end and my faith begins.

I found an article that contained a blessing from Rabbi Goldie Milgram, and it said:

May you be blessed to speak of your experience in the community. The shock and trauma you have experienced, the isolation and grief, may no others feel alone while coping with life. In Psalms we read that even after the devastation of the Babylonian exile, they prayed for ‘those who sow in tears to reap in joy.’ May your harvest come to you, even if it is not the harvest you expected, but still a good and satisfying harvest. May we all move forward into life with compassion for those we see pushing a stroller with a child inside, for we know not the pain that lurks in anyone’s life, or what toll may have been taken en route to their moments of joy. May you long enjoy life in each other’s arms.

Amen.
XO, Isabel

Music to heal

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“I’m never going to know you now But I’m going to love you anyhow.” ― Waltz No. 2 (XO), Elliott Smith

One of the very first things I did to truly begin my healing process was to listen to music. Music is such an integral part of my life, I’m not sure I spend much time not listening to music. I did searches on Google to find songs about miscarriage and pregnancy loss. Or just songs about loss in general. There are many meaningful songs about miscarriage or pregnancy loss. Plus, there were just songs that have always touched me deeply, such as The Scientist by Coldplay or Waltz No. 2 (XO) by Elliott Smith (the whole reason behind “XO” in XO, Isabel, by the way).

Here’s a Spotify playlist I created to honor our son, Leo:

XO, Isabel

Leo’s Story

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“Whoever survives a test, whatever it may be, must tell the story. That is his duty.”
― Elie Wiesel

I made a promise. I promised that I would find the words to share the story of what has happened to me. My husband. Our family. Our friends. What has happened has happened to us all. In varying degrees, surely. But, this story happened. This story is happening. This story will continue to be told so long as I continue to find the words to share it with you. This is how I will gather my strength. I will not hide behind a veil of privacy. I am choosing to not be silent about infertility. About miscarriage. About perinatal loss. I will not stay silent. There are so many faces and I will show mine with bravery.

Here’s Leo’s story:

Leo was my 5th pregnancy. He was very much desired. Very much loved. I was feeling a bit under the weather in early May and on a whim, decided to take a pregnancy test since my cycle was a bit late. I just felt off. Something was up. I bought a test at the Walgreens adjacent to my office building. I remember one of my coworkers being in the store and I didn’t want to be caught in the pregnancy test & family planning section of the store, so I made a circle around the aisle to avoid being seen. I was able to make my purchase and dash out of the store unnoticed. My first stop was to my desk where I discreetly opened the pregnancy test package and slipped one into my pocket and off to the bathroom I went. I took the test and almost immediately I saw two lines. If you have EVER experienced infertility, you will know that time and time again, you only expect ONE thing and that’s a BFN (Big Fat Negative). I saw those two lines and my jaw dropped in disbelief. How can this be? I got pregnant without any medical intervention? I remember my hands shaking and I nervously tried to sort out what to do. I start trying to reach my husband, I  believe text messages and Skype messages went along the lines of “OMFG. Oh $h!t! I’m pregnant!”

I immediately planted myself in a conference room with a telephone and my laptop and started calling around looking for a perinatologist and an OB/GYN, since I didn’t have one in the area in which we now lived. I certainly have never been to an OB, as I always avoided them to preserve my own sanity. I knew I was in trouble. I am a diabetic. I wasn’t on any medications, as I was foolishly trying to heal my own body with good food and I wanted to do it without medication. I was drinking green smoothies and cut out most all meat and animal products, I was feeling great! However, I knew I had to get on another plan. I had to get in to see a doctor immediately. I needed to be on insulin, and fast. The first week are the most critical in the development of a baby, and I know this. And I can blame myself all I want here. I can say that I had no clue that I’d ever spontaneously get pregnant the way we’re “supposed” to, because it just never happened to me. I was terrified. Perinatologist offices told me that they didn’t see patients without a referral from an OB, so I called a bunch of offices and missed out on one because of my due date being in January. And, so I took the first appointment with an OB that could see me the very next day on Friday, May 10, 2013.

My appointment was late in the afternoon and I was anxious to get the desperate help I needed. I feared judgment and criticism for foolishly being unmedicated. Because, on top of being diabetic, I have some issues with hypertension. It’s all part of an incredibly awful condition called PCOS, or more commonly now, Metabolic Syndrome. It’s a trifecta of awfulness. Being the Internet user that I am, I of course Yelped our soon-to-be OB and he had mixed reviews. We’ll call him Dr. J. He met with me along with his nurse, whom I will call Lolly (more on her later). I went ahead, despite the mixed reviews, because I needed someone NOW. And I figured if I wasn’t satisfied, I could switch out to a new doctor later. He saw me, did an exam, did a quick ultrasound, but it was too soon to see much. He took my blood pressure and checked my heart. His next move was to send me to the ER. It was late on Friday and he was not comfortable leaving me unmedicated and the fastest way to get test results and get me medication would be a trip to the ER. So, there we were, nervous and waiting. I was given insulin. I was given IV medication for high blood pressure. I was given lots and lots of fluid, because apparently I was pretty severely dehydrated. By that very next Monday, I was building a team of medical professionals that would help me along, including a great RN in the Diabetes & Pregnancy management program as well as a perinatologist and a cardiologist. I was feeling confident I had built a GREAT team to help me through this.

Because of my fertility history and recurrent pregnancy loss (RPL), I was beyond terrified. I was certain that I would miscarry at any moment just like every other time. I had never gotten as far to even see a small little embryo, yet alone the beating of a heart. I became a model patient. I was compliant with EVERYTHING. I changed to a very restrictive diet. I had become insulin dependent. I took my blood pressure medication religiously, only for it to cause terrible side effects. I did everything I could. The weeks passed and we were so far moving along as smoothly as possible. We saw growth in ultrasounds. We saw an embryo. We saw the flicker of a heartbeat. We heard a heartbeat. Each visit we grew more and more hopeful. I made it to 8 weeks. Then at around 10 weeks or so, we began our integrated testing to check for abnormalities, such as Trisomy 21 (Down Syndrome) and Trisomy 18. We had a Nuchal Translucency (NT scan) test performed, and when we received those results we were relieved to learn that we were screen negative with a 99.8% chance that our child did not have T21.

We made it to 13 weeks. We made it to the second trimester! Of course everything would be fine. It was FINALLY my time! Everyone told me so. Everyone hoped for me. We all believed. We started to believe it, we started to make plans. We started thinking of names. We started to get anxious to find out the sex of our child. My sister started talking about baby shower dates. I started poking around baby sites to look at baby gear. We made it to 14 weeks, and 15 weeks … and then to 16 weeks, 5 days. On this day, it was a Wednesday, we couldn’t wait any longer we were bubbling with excitement, that we paid for an elective ultrasound and to our delight, we were told we were having a BOY! Our little Leo. We were excited to share with our families and friends, that all special planning for unique and creative ways to announce this news flew out the window and we spent time on the telephone calling our parents from the car in the parking lot. Excitement all around.

On this very day, 16 weeks, 5 days, I went for the final part of our integrated testing. Not worried one little bit. In retrospect, when they did the ultrasound, I noticed that he was measuring about a week behind. Up until then, he had been measuring right on target. I just thought it was because it was a different ultrasound machine. First time there. I don’t know what, I just didn’t think much of it.

Then, it’s Thursday, August 8. Late in the afternoon, I get a phone call from our genetic counselor. I’m at the DMV and ask if he could call me back in 10 minutes. But, he has bad news for me. He tells me so in the very short time we did speak. I nervously awaited his return call in my car. I was already crying and trying to pull myself together to have a conversation with someone that is more than likely going to deliver some very difficult news.

He calls back after 17 minutes. He tells me he’s going to give me some numbers that are going to sound scary. My levels came back as screen positive for Down Syndrome (Trisomy 21). He explained that just because we were screen positive, it did not mean that he definitely has T21, but that we had a greater than 1 in 3 chance. He mentioned that the main reason was because my Inhibin-A level was very elevated. Where the expected range should be less than 2, mine was at 5.8. He went on to explain that elevated Inhibin-A levels also can be indicative of a placental problem that is associated with Intra Uterine Growth Restriction (IUGR), pre-eclampsia and pre-term labor. He went on to explain that an increased Inhibin-A level and its associated problems could cause increased blood pressure, of which I had just noticed that my medications weren’t working as they were before. He had a couple of options for us; We could come in on Friday or Monday. Since my birthday was on Saturday, I wanted to at least try and enjoy my weekend without more worry. So, we opted for a Monday appointment.

On Monday, August 12, 2013 we meet with the genetic counselor and she starts to explain the results and how they follow certain patterns. That although we sort of matched some of the typical patterns for T21, they also weren’t typical, especially the very elevated Inhibin-A level. We had a few options, including proceeding with a level II ultrasound, a blood test (Harmony) and/or amniocentesis. We opted for the Harmony blood test, rather than amnio, as we didn’t want to risk the life of our baby. We are then sent out to the waiting room and wait to be called back for our ultrasound. To be honest, I was sort of looking forward to see Leo again. I always enjoyed watching him move around and I was curious to see how much he had grown and to also reconfirm that it was a boy!

Sadly, I knew there was something terribly wrong the moment they began the ultrasound. There was no movement at all. I couldn’t see a heartbeat. I couldn’t see him move. He was just laying there still. I was holding my breath. I asked “is there no cardiac activity?” She says, “just a moment. when was the last time you saw your doctor?”

I started to cry. She turned on the audio and there was just silence. No heart to be heard. And I can’t shake the image of his little still body just lying there. She excuses herself and a few moments later the genetic counselor and Perinatologist (Dr. DM, who happens to be the wife of my Perinatologist, Dr. EM) come in to tell me that they want to take a second look. After they did, they just all said they were so sorry. The doctor in the room tells me that she will tell her husband the news, that she knows I am his patient. That she’ll call my OB (Dr. J) to ask what our next steps should be. The genetic counselor calls the State of California to discuss whether or not we should proceed with an Amnio anyway, but they all decided that it would be a moot point. Dr. DM comes back to tell me that Dr. J told her that they don’t handle 2nd trimester D&E procedures in their office or hospital and that I would need to be seen by someone else. I was referred to a Dr. K and they got me in the next day to start the two-day procedure. I’ll explain this process in another post.

My son left my body on Wednesday, August 15, 2013. May he forever rest in peace. And may I know that I did everything I could to keep him safe. To keep him with me and I wish I could do things differently, but I can’t. I can’t take back what happened. It just did.

We love you, Leo. You were wanted. You were dreamt of. You will always be a part of us. Forever and ever.

XO, Mom