My Battle To Baby(s)

This post is dedicated to the hopeful mommy-to-bes out there.  No matter how long your path takes, whether it takes 1 month or 60, till you have your baby in your arms it feels like forever.

Thank you so much for the outpour of love and support that came from my first blog post! I never imagined the positive response I’ve received.  xo

Rather than pick up the linear timeline where I left off, I want to go back a bit. I come from what I always considered a long line of Fertile Myrtles. My maternal grandmother had 7 children, my mother had 5, and my oldest sister, who apparently can’t look at her husband without getting pregnant, has 8 children.  So I was certain that the day I got off birth control I’d get knocked-up. Because of that fear I was always very responsible; I had never even had a legitimate pregnancy scare before.

In December 2013, three months after my husband and I got married, we decided we were ready to start our family. I stopped my birth control and bought a pack of pregnancy tests. Nothing the first month. Disappointed but I knew it was completely normal and to be expected. The 2nd month, nothing. Mildly irritated but still normal. My doctor has advised me at my pre-conception check-up to allow my menstrual cycle (I hate that term) to normalize for two months before trying to conceive. Two months is a long ass time to wait when you want to get pregnant; when you are ready to have a baby you want that baby NOW. In the months that followed I went through multiple 20 packs of ovulation test kits, charted my cervical mucus, and even purchased a special oral basal fertility thermometer to record my waking temperature every morning. Nothing.

When you’re trying to get pregnant it feels like everyone around you is getting pregnant on the first shot. Those people suck. Just kidding! They are very fortunate and I am jealous. But trying to get pregnant can make you do thing that you know aren’t logical…

FullSizeRender (3)

Not my brightest idea

Months came and went, 11 to be exact. I was so pissed off at my body and feeling like a complete biological failure. I didn’t want to think about it anymore. I didn’t want to talk about it anymore. And then it happened. A faint second line on the pregnancy test. I had thought for nearly a year of fun ways to reveal our pregnancy to my husband and when it finally happened I opted for Facetiming him and screaming like a crazy person.

We were on cloud 9, I was finally pregnant! At 5 weeks I had a blood test and an ultrasound to confirm the pregnancy. We got to see the little blob that was our baby! It was the most special little blob we’d ever seen. We started talking about names and discussing our bright new future. We planned to wait till the 2nd trimester to announce the pregnancy to our families but we couldn’t resist telling a few of our closest friends.

The excitement was short-lived. The blood test confirmed I was pregnant but my hormone levels were much lower than they should have been. Then I started having very light spotting.  I was so scared I was going to lose this baby after waiting nearly a year for this moment. I couldn’t hold my tears back when I would speak on the phone to advise nurses.  They asked me to come back in at about 7.5 weeks to check on our baby. The first thing I saw was a flicker. My worries vanished. Our baby had a heartbeat. My own heart flutters just thinking about it now more than two years later. Next we heard the heartbeat. It was music to our ears. I think my husband teared up a bit even. He had been scared too but was staying so strong for me.

My doctor called it a “threatened miscarriage” and said she didn’t expect the pregnancy to last. We didn’t listen. We had seen and heard the heartbeat, our baby was alive and the excitement returned.

The following saturday we were getting ready for my sister’s black tie 40th birthday party when the cramps and bleeding started. I called an advise nurse but I couldn’t be seen till Monday. My heart was broken but we pulled ourselves together, slapped on smiles, and went to  the party.  We tried to remain positive and I tried not to think about what was happening inside my body.

Two days later I went in for an ultrasound. The flicker was gone.  I lay there on the table, tears silently rolling down my face, waiting for a 2nd OB to come and confirm the miscarriage.  I faced the wall, I didn’t want to see the motionless ultrasound image again.  We made it 8 weeks and it was over.  I was given the option of going home and waiting to miscarriage naturally or I could have a Dilation & Curettage procedure (D&C), basically an abortion procedure. I opted for a D&C, the baby was dead, I wanted to get it out and over with.

We rushed out of the clinic, I didn’t want to see any of the pregnant woman in the waiting room.  Once at home my husband lead me up to our bedroom to bed but I didn’t make it. I collapsed on the stairs and the emotion of our loss came flooding out. I honestly can’t recall much of the night after that.

Later that week I went in for my scheduled D&C.  I had to take a strong antibiotic on an empty stomach an hour before the procedure so by the time they took me back I was extremely nauseous. They led me to a bed with a bag for my belongings and a gown to change into. My husband wasn’t allowed to come back with me, I would see him again in recovery.  Once I was ready my bed was wheeled down the hall to wait and get an IV line started. I asked for a barf bag because I honestly felt like I was going to puke. The nurse tending to me was very friendly and chatty. She complimented me on my ring and we talked a little about my wedding.  Then she said it, “Why are you having this procedure today, you’re just not ready to be a mom?”  I was stunned. I would guess the abortion rate among married woman is much lower than the general population but maybe I’m wrong.  As I mentioned before, I had never been pregnant before.  I am Pro-Choice but I am thankful I have never had to make that choice.  I didn’t know how to respond. “The baby died,” I finally stammered out. My brain couldn’t formulate “miscarriage” at that moment. “Oh, I’m sorry. You know my sister had one of those before,” the nurse replied.  I just wanted her to leave.  When she finally did I laid there alone, silently crying, trying not to barf.

When the time came, they wheeled me down the hall into an operating room.  I was thankful it was all women performing and attending my procedure.  I remember the room was cold so they covered me with a warm blanket.  They put my legs in stirrups and tied them there.  They started pushing my sedative which instantly took effect.  I was awake for the entire procedure but I was mentally and physically numb.  I recall a nurse with the softest warmest hands in the world held my hand the entire time.  To this day I am still so thankful to her.

When it was over I imagined where the mass of cells that had made up our baby had gone. In the trash…biohazard…incinerator maybe…

FullSizeRender (4)

My dogs keeping an eye on me as I recovered at home

My husband really wanted me to write about our miscarriage, but he wanted me to make it a positive thing.  I’m struggling to find that positive twist.  Miscarriages suck for lack of a better word, and are physically, emotionally, and mentally traumatic. I think the worst long term effect is I no longer equate pregnancy with having a baby.  A friend recently shared with me she had had a miscarriage and after she “felt sad/embarrassed about it and felt that I needed to keep it a secret.” With 1 in 4 woman experiencing at least one miscarriage in her life, keeping it a secret makes us all feel more alone.  Don’t get me wrong, I don’t expect woman to want to share something so traumatic and disappointing. That’s why I can’t find the positive twist.  I guess I am thankful I lost our baby “early” rather than later…

After I recovered from my D&C we were referred for infertility treatment.  Our specialist said he believed I had Polycystic Ovarian Syndrome (PCOS) which was keeping me from ovulating regularly.  And that alllllllll the ovulation kits I’d gone through were a waste because they don’t work for women with PCOS.  I kept a journal during the process. I wrote about how ill the various ovulation medications made me feel; the hormonal swings that made me feel like I was out of my mind.  I was obsessive. Getting pregnant was all I thought about all day long. I was even getting annoyed of thinking about it all the time.   All the fear I had accumulated during my previous pregnancy leading up to the miscarriage still followed me, more so maybe even.  For over two months this continued, I never felt well. I had what I described as a feeling of “general shittiness.”  I wrote in my journal:

“Sick and tired of being sick and tired. I can’t remember the last time I felt good. I’m so sick and tired of hearing myself think and talk about TTC  (Trying To Conceive) and infertility. But I’m also really scared of being pregnant again. I’m scared of losing it again or of all the other bad things that can happen. I feel like a crazy person. I want it so bad but I don’t want it/scared of it all at the same time. I want to be pregnant but waiting and fear will just begin again. I wish so bad I could be as ignorant and optimistic as women that get pregnant right away and everything is so easy for them. I’m so bitter and jealous.

I try to remind myself that I come from fertile women and I just need a little extra help to unlock my potential. I wish I could just turn off all the negative thoughts.”

I had to have a procedure called a hysterosalpingogram (HSG), for a HSG a doctor fills your lady parts with dye and then a radiologist takes images of how that dye travels through said lady parts. “It was amazing to see what my organs look like. The fallopian tubes literally look like a strand of hair!” Radiologist said everything looked fine except for what looked like fibroids or polyps in my uterus.  I asked if they could be scar tissue from the D&C, she said yes. “I started to tear up. She said its really easy to fix and remove. I cried all the way back to work. Its just one more set back. One more hurdle. I’m so over it.”

My infertility specialist wanted me to scrap the month and have the procedure to remove the scar tissue. I was so frustrated. This cycle I had already been on heavy ovulation medications for two weeks, I didn’t want this month to have been in vain. I insisted we continue and see this month through and if I didn’t get pregnant than I would have the procedure. I did not want another fucking procedure. I dreaded it. The thought of it gave me flashbacks to the D&C and being tried to the stirrups. “I want it to happen this cycle so I don’t have to have the procedure. This ordeal makes me feel weak because I want to give up so quickly.”

We continued with the cycle and I was given an ultrasound so the doctor could see if I was ready to ovulate. I wasn’t. It was disappointing because I would have to double my medication for 5 days and come back again. I asked my husband if it was hard for him to see an ultrasound image again since our miscarriage – he didn’t like it. Five days later we returned and this time I had 3 eggs that were ready! I was told I had a 40% of getting pregnant this month and a 6% chance of getting multiple. She asked, “you have a chance of having triplets, do you want to continue?” The thought of triplets was horrifying to me but we said yes without skipping a beat.

We were given medication that James would have to inject into my stomach at home which would cause me to ovulate within 48 hours.  I hate needles and shots but it wasn’t bad. So for the next few days we started sending in applications for a stork…

I was told to wait 10-14 days before taking a pregnancy test since the ovulation injection could cause a false-positive. I waited 8. Those are the 2 longest minutes of your life! But there it was, a super faint 2nd line! I knew it was too early so I kept it to myself and tried to not get too excited. Two days later I took another test and the 2nd line was slightly darker. I decided I would tell my husband that night. I got one pink and one blue bandana and I made signs for our two dogs to wear around their necks, “I’m going to be a big brother!” and “I’m going to be a big brother (again!)” I told my husband to call the dogs. He thought the bandanas were cute but in true man style he was completely oblivious to the signs they had around their necks. He just wasn’t getting it so I practically shouted “I’m pregnant!”

Processed with MOLDIV

A blood test confirmed the pregnancy and this time my hormone levels were elevated appropriately. At 5 weeks along we went back in for an ultrasound to take a look. Although I had had so much fear of being pregnant again, I was feeling really positive this time.  So when the ultrasound tech didn’t say anything right away my heart sank. Not again! I couldn’t bring myself to even look at the screen. Then she spoke, “Do you see those two sacks?” My eyes pop open!

“Twins?!”

“Yep!”

Processed with MOLDIV

Twins!

We had never wanted twins but we were so excited that I was pregnant again and that everything looked good so far.  The first day we couldn’t stop laughing about it. The next day I cried all day at my desk. I was terrified! I come from a large family, I’ve seen firsthand how hard one newborn can be at the beginning. I didn’t know how we would manage. Thankfully my bestfriend knew just what to say: FullSizeRender (5)

Thank you for sticking with me! I plan to post at least once a week. Stay tuned for NICU, Postpartum Depression, and Other Things That Suck. All with lots of never before shared photos of A&A during our 133 days in the NICU.

Processed with MOLDIV

Let’s Get Started, Shall We

Welcome to my first post! Please begin by reading the “About” section.

When the seed was planted for this blog, the biggest roadblock, other than coming up with a name, was where to start. Currently my twins, A & A, are 15 months old and so much has happened! How could I begin without explaining where we’ve been, but we’ve been everywhere, including near to death. My daughter, Baby Squirrel, has been through so much that I’ve even forgotten about many of her diagnoses that have been overshadowed by additional diagnoses.

Regret hit me for not starting earlier. Then I recalled I had started earlier. Shortly after the twins were born while they were both still in the Neonatal Intensive Care Unit (NICU), I was in the deep depths of misery. I would spend my time between trips to the hospital scouring the internet for hopeful stories about preemies and VSDs and Dandy-Walker Syndrome, and all the rest of the scary words being thrown at us daily. I remember even googling, “are kids worth it?”  My husband and I had always wanted kids. We had struggled with infertility for a year before having a miscarriage and beginning fertility treatment. I knew I was not OK, I needed help.

The following post I submitted to March of Dimes: Share Your Story:
09/2014
31 Weeker B/G Twins in NICU + Special Needs Child (Cleft lip/palate & Dandy-Walker Syndrome)

Where to begin… My husband and I tried for over a year to get pregnant before seeing a fertility specialist. We had been pregnant once but I had a miscarriage at 8 weeks. Turns out I have PCOS (Polycystic Ovarian Syndrome) and don’t ovulate normally. However, after one round of ovulation therapy (and a warning that we might conceive triplets) I did in fact conceive. At 5 weeks we learned it was twins. The first day we laughed. The next day I cried, all day. I was so scared. One baby is hard enough work on its own. After a few days when it sank in a little we were so excited.

The pregnancy started out well. At our gender ultrasound we didn’t learn the genders but we did learn that Baby A had a cleft lip & probably palate. We were devastated.  At the time it felt like the worst news in the world. Like our world with perfect healthy babies was over. Later we learned Baby A was a girl, I felt so bad for her. I felt like we wouldn’t be able to take newborn pictures of her or want people to see her. Feelings that I feel very guilty about now. After meeting with a geneticist my husband and I decided to get an amniocentesis to find out if either of our twins suffered from any larger chromosomal problems. After the traumatic procedure and 2 very long weeks we learned that our son & daughter were chromosomally  perfect. Over time we met with what would be her craniofacial team and saw how they would help fix her clefts. It was so reassuring and our fears were greatly relieved.  I thought that was the end of our worries.

Unfortunately our baby girls story gets worse. At a later ultrasound we got hit with another huge bombshell – a defect in our baby girl’s brain. They found that our baby had Dandy-Walker syndrome, a congenital birth defect affecting the cerebellum & 4th ventricle. They said it looked mild but Dandy-Walker syndrome can cause physical & intellectual impairment to severe mental retardation. There is no way to see how it will express itself. Again we were devastated. Her brain! No parent ever dreams of having a child with special needs. But every time i worried about her she would give me a kick. Like she was reassuring me she would be fine. Although I was heartbroken I had so much faith in her.

Before pregnancy I always said I was pro-choice and I would never bring a special needs child into the world. But she was already my baby girl. I could feel her moving inside of me. I was shocked when doctors gave us the option for a “reduction” to abort just her. We didn’t consider it for a minute.

My pregnancy continued on. We did research and came to terms with another of her conditions. I had Braxton-Hicks contractions everyday starting in my 2nd trimester. After being evaluated by Labor & Deliver they determined I just had an irritable uterus and lots of contractions were just my thing. Unless they got painful I was OK.

At 31 weeks, 3 weeks into my maternity leave, I started having contractions that felt like period cramps. I tracked them and they became more frequent. I called in and they told me I should go into L&D for observation. At 6pm on 9/3/2014 I was chitchatting with a nurse as she tried to get the heart rate monitors on my belly. She was having a little trouble finding baby A so she went out to get an ultrasound machine. I wasn’t concerned and told my husband to use this time to go move the car and grab my bag in case they wanted to observe me over night. A male nurse came back in and after locating baby A got on his phone and called someone “STAT”. I asked what was wrong but he wouldn’t tell me. A few people entered my room and checked baby A again and called more people in. They told me baby girls heart rate was under 80 and she would have to come out via emergency c section. I was so scared. I tried calling my husband to get him back in the room. They grabbed me and started giving me an IV and telling me about general anesthesia. Right as my husband returned they were rushing me out of the room and down to the OR. Once I was on the table I could feel fast moving hands all over me but couldn’t see anything due to the infamous blue curtain. I was so scared they were going to cut me  open before I was under I kept yelling “I’M STILL AWAKE! I’M STILL AWAKE!”

My babies were born at 6:29pm. Baby girl was 3 pounds 6.3 oz. Baby boy was 4 pounds 5 oz.

I woke up in so much pain. My husband had escorted our babies to the NICU where I wouldn’t see them till the next day.

The next day I was determined to get into a wheelchair so I could see my babies. When I first saw my daughter I was shocked by how big her cleft was. It was completely up and through her nose. That was the least of our worries. Both our babies’ lungs were underdeveloped. It killed me to watch my son fight to breathe. I cried nonstop the first few days every time I saw him. Baby girl had the same condition but didn’t seem to be struggling as much. A few days later when they sent me home they told us to expect them to remain in the NICU for 4-6 weeks. Leaving them was the hardest thing.

During the first week we learned our baby girl ALSO has a hole in her heart. It was presented to us as a very large hole that could require open-heart surgery. I was so scared she was going to die. I ran out of the NICU and collapsed in a chair in the hallway, repeating to my husband “I can’t lose her, I can’t lose her…” Later we met with a cardiologist who explained that although it’s one of the largest VSDs he’s ever seen they usually close on their own in a few years. That he would not operate on it. Due to the hole in her heart her lungs have excess fluid in them making her breathing fast & hard. In order to help with the fluid in her lungs they had to give her diuretics which caused her to lose even more weight. Seeing her so tiny compared to her brother is so difficult.

Now almost 3 weeks later our son is doing great. He is off air and up to 5 pounds. We are working on breast & bottle feeding. Once he learns how to eat he can come home. We all hope that is in the next 2 weeks.

Our daughter has finally started to gain some weight back but she is still a pound and a half smaller than her brother. She struggles to breathe and they change her breathing machines often. It still kills me to see her so skeletal. Holding her is scary due to her small size. Plus she has terrible reflux so her feeding tube had to be pushed down into her intestine. Most days feel like 1 step forward 2 steps back.

As for our daughter’s Dandy-Walker syndrome, her ventricles do not seem to be swelling at this time but the doctors still think she will need a lot of extra help. Its so heartbreaking to hear. I hate having to “wait and see.” I am so overwhelmed with fear of having a child with special needs, let alone having another baby to care for at the same time. I cry most of the days. My husband is so amazing and supportive but I feel like I am drowning in despair.  I have an appointment with a psychiatrist to discuss possible PPD.

I knew our twins would most likely be in the NICU but I never realized how hard it would be. My husband stayed home with me for 2 weeks to help me recover but now is back to work till they come home. My routine is going to 9am rounds by myself. Listening to the doctors talk to each other makes everything sound so scary and I don’t understand most of it. I try breastfeeding my son and then go home and pump every 2 hours. At 4:30pm I meet my husband over at the NICU again. Its so draining. Pumping all the time and going back and forth to the NICU takes up all our time. Our babies aren’t home and I still don’t get time to sleep. I am hoping its easier once they come home.

But I am also terrified of them coming home. I’ve seen them struggle to live. I’ve seen how fragile they can be. I’ve become to rely on their monitors to show me they are OK. I don’t trust myself with my own kids. It might be PPD but I am terrified of being a mom. I’m scared I won’t survive it. I feel like every thing and every thought is overwhelming. I’m terrified of having a child with special needs. But I also don’t want to set up a self-fulfilling prophesy by treating her like she has special needs.

Right now I pray my daughter keeps gaining weight as that will hopefully help many of her health issues.

I just wish I could fast forward in time.

Phew, that was painful to revisit.

In posts to follow I will work on getting you all up to date with all the fun stuff thats happened since their exciting arrival.

Till then,

Processed with MOLDIV

PS. Ironically I don’t think I swore at all in this post. I’ll work on that.