Loss after Infertility (Pt. 2) – How to deal with the aftermath.

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When you have a baby after a miscarriage, it’s called a “Rainbow Baby.” My son Alef was a Rainbow Baby but, did you know that when one twin passes away that the baby is called a Sunset Baby? Alef was a Rainbow and then a Sunset. I never heard of this until recently, but it describes that loss perfectly. The sun sets on all the hopes, wishes, and dreams you had for them. When what was supposed to be my Rainbow turned into a Sunset, I was numb. The other twin who lives is called a Sunrise Baby, and I have one of those too. Part 3 will be all about her; I hope you will read the final chapter to learn more.

This part of my story is the hardest. Living in a state of limbo was impossible for my type-A personality. Being hit with the reality that I had no control over how my pregnancy would progress that bluntly left me splintered in more ways than one. There is so much emotion still wrapped up in the loss of my second son. I know I made the right decision for my baby that was still in my belly, but as I mentioned in Part 1, I wish things could have been different.

I remember being back in L&D after I delivered Alef. I was put into one of the most oversized rooms on the floor when I arrived the day before. Maybe it was the only one available, perhaps it was out of pity, but I was grateful for the room. It still wasn’t large enough to hide the baby station at the back. He should have utilized that area and his twin (had I been lucky enough to escape a c-section) but, now it was just taking up space. Fortunately, my husband was still with me in the hospital because I needed him and the support. Truthfully I don’t remember much about the day after. I only remember bits and pieces of a million people asking me all kinds of questions over and over again. The pity in people’s eyes, the things they would say to me or assume was sole crushing. One technician came in to do a breathing treatment with me, I know she was trying to be kind, but she told me how sorry she was about my loss. Even back then, I chose positivity. I instantly got mad and snarled back at her, “No sorries. I’m still pregnant”!

I was on bed rest at this point, and I remember being so defeated and emotional as I passed colossal blood clots. As some of you may know, blood, let along enormous amounts of it, are an unwelcome sight when you are pregnant.

I’m not sure how long I was in that room before transferring me to the Perinatal Care Unit. I never knew there was such a unit; most women probably don’t, until they do. I have no idea what the actual floor looks like because I was on bed rest for the entire time I was there. That was my home for the next 4.5 weeks, although I had no idea how my stay would be when I arrived. The head nurse on the unit was amazing, supportive, and cared so much. I wish I could say the same about the high-risk doctors assigned to me during my stay.

Every day when they would see me during rounds, they made a point of telling me that I was not out of the woods and could lose this baby too. The negativity was so apparent, and their attitude so callous. I was a mess, trying to find any reason for why I went into early labor. One night I had a question, and one of the fellows on call that night came to see me. She was about 4-5 months pregnant and told me I had to calm down, that I was making it worse by overthinking. When I told her she had no idea what it felt like to be in my position, she had the gall to say to me, “well, I know people who have.” #1 She was NOT in my place, knowing people who have is not the same. #2 Whoever these “people” were, they may or may not have had the same thing happen to them. And #3 You are a woman with a baby in your belly; shame on you for shaming me. I had every right to be upset over losing a child and being extra cautious for the one that still was growing inside me.

I can go on and on about callousness during my stay. From the MFM, whose own wife was pregnant with twins, who you would think would have an ounce of understanding for how hard this was. To my actual doctor, who told me, “Maybe you shouldn’t have gone away.” A little too late for that doc, don’t you think?

I endured the endless negativity daily, but the further away from the incident I made it, they began adding, “That is a good sign.” Somewhere around 2-3 weeks later, my doctor decided to insert a cerclage to prevent my cervix from opening prematurely again. Something I genuinely wish he would have done from the beginning. The second he finished the procedure, he looked at me, with my legs still in stirrups, and said, “Let’s talk about getting you home.” Guys, I couldn’t make this crap up if I tried. Being that I wasn’t at the point of viability (typically 24 weeks), he saw no reason to keep me in the hospital.

During one of my many disagreements with him, the unit’s head nurse was in with me. My point was, I WAS close to viability, and the nearest hospital to my home was unable to handle a high-risk birth that required a NICU stay. While I found myself with a lack of support in doctors, I found in spades with others. The head nurse and I talked while she was giving me my weekly Progesterone shot, and she encouraged me to fight for what I thought was best and supported my decision to stay in the hospital. I didn’t give a DAMN what he had to do for insurance purposes; I knew I wasn’t leaving the hospital. This nurse, whose name I wish I could remember, helped me through so many tough times, and I am so grateful that I had her in my corner.

I continued my mental health therapy via telephone during this time, and thank goodness for that. Without my long-term therapist, who unfortunately understood what it was like to lose an infant first hand, I am not sure I would have made it through while keeping my sanity. My hospital also had a counselor and young Chaplin who would pay me weekly visits. The counselor was kind and empathetic, and helpful with so much. The young Chaplin was not of my faith, but that didn’t matter. The love and light and prayer this young woman provided touched me deeply.

During this twin pregnancy, I went for infusions every few weeks for an immune issue I developed. They were out of pocket and cost upwards of $1000 a pop. In my quest to do everything I could for the baby in my belly, my RE and I decided I would do a treatment in the hospital after all that had happened. After explaining my plight to the hospital pharmacy’s head, she somehow made that bill (which was even higher administered in a hospital and not covered by insurance) go away. I may have been in the most challenging situation I had ever experienced until that point, but there were so many blessings and angels around me despite it.

Writing this down for you now, I can’t help but ask the question, “Why were the doctors awful to me”? Like the rest of the staff I mentioned above, they see bad things happen to good people daily. The difference was/is that these other individuals let themselves feel grief for my situation while the doctors either can’t or won’t. I feel bad for them living such a cold, clinical existence devoid of any all emotion. Not to generalize here, not all doctors are like this, but unfortunately, this was my experience.

I often thought about who was still moving in my belly. Was it another boy, or was it a girl? Oddly enough, I would have a monitor placed nightly on my stomach to hear and check my baby’s heart. There are two color choices for the straps, and each night the nurse would choose pink and not blue. Now I’m not sure if GOD was telling me something or it was just a coincidence because they swore to me they didn’t know the baby’s sex.

We went on like this, bed rest, devices constantly blowing up on my legs, infrequent showers in a chair, and many caring visitors for weeks. The days all felt the same and began to blend into one another. Each day I was there a gift. There was comfort in the monotony of my routine until there wasn’t.

During a visit with my MFM, I told him that I felt a trickle, and to my chagrin, my water had started to leak. Off I went, back to L&D after a scan showed too much of my water was disappearing. The regular MFM’s were out, and a substitute female doctor was on call that weekend. I had just finished my 22nd week of pregnancy. She was in stark contrast to the other doctors, and I truly felt blessed that she was on during this super stressful time. While my own MFM often tried to discourage me from saving this child, I was adamant. Plus, my husband and I were at odds because of the awful information he was spouting at us. But, I learned more than I wanted to about legal matters when it comes to pregnancy during this time. For instance, did you know when a woman is pregnant (even this far along), that the decisions are solely hers to make? Even if the husband is not on board with saving this life, he has no say. Of course, we discussed it, and of course, I wanted us to stay connected in our decision (which we did), but I am glad that I had the final say. Unless he had the opportunity to talk to the baby during the darkest of nights, play “kick mamas hand,” and tell them to stay strong daily, he could never possibly understand the connection and bond that forms before birth. We asked to speak to the Neonatal Doctors several times, and their advice was integral in our decision. Ultimately, we agreed on a birth plan that included life support for our tiny infant if I went into full labor.

The next five days saw me on a cocktail of steroids for my baby’s lungs and days long Magnesium treatments. For those of you who have been on Magnesium for any period, you know how much fun it can be. If you haven’t, be glad, you don’t understand the effects of it intimately. They describe the infusion as a warm flush over your body. In reality, it’s lying on your side, not being able to get up due to the foley and drugs. Also, you are NPO because they assume that you will go into emergency labor at any moment. Being on it for days can cause hallucinations, or at least it did for me. Day 3, I swear I saw GOD or an angel coming for my baby along with twinkling lights. I started screaming while holding my belly, “You can’t have this one too.”

By day 5, I was stable, and it was a Sunday when the nice female MFM came by to see me. I was thirsty and miserable and so uncomfortable. She let me have a lemonade the day before, but I couldn’t take any more. That afternoon, they shut off the Magnesium after the second round of steroids, and I was considered stable.

My husband and son had just come to visit. I wasn’t due until November; my actual due date was 11/11/11. Perfect for this miracle pregnancy is what I used to think, but now, it was July, still too soon to welcome a baby into the world. On this particular Sunday, I was four days into my 23rd week. I remember hearing that Victoria Beckham had recently given birth after her husband David released gorgeous pictures of her. Oh, what I would have done to have a burgeoning belly as she had in those pics. It was a rainy day, the movie “Little Miss Sunshine” was on TV, and we watched it. Being in a hospital room with a TV even nine years ago was akin to having a TV with only 13 channels from my childhood.

My boys went home, and I believe my mother in law came to visit too. I was all alone when, suddenly, the most horrific pains started. I didn’t want to think about it, but I just knew. A very green Medical Student came to check on me and had no idea what was going on and needed to call her Resident. I will spare the details, but I was in full panic mode while trying to examine me. I was screaming for them to do something, anything, as I felt her trying to come out. Sure enough, the baby had started descending the birth canal.

I called my husband and told him what was going on. He told me how proud he was of my strength and knew the last week was tough, but that he was pretty sure I wasn’t in labor. He didn’t understand the gravity of the situation until he got a midnight call from the hospital telling him to get there ASAP.

Here we go again; I thought, another traumatic birth. There was a rush of doctors, and within minutes I was in the OR. By this point, I think it was way after midnight. Because of the emergency nature, and because the baby was so tiny, they couldn’t risk a vaginal delivery and had to do a c-section. There was no time for an epidural. I remember yelling, put me under, get the baby out, save my baby. Then it was a blur.

My next memory is of waking up in recovery, again, not knowing what happened. When I looked over, there was my husband with a big smile on his face, telling me we had a little girl, and he named her Olive. He had arrived just as she was getting transported to the NICU. “She looked like a tiny little Olive,” he said. The little girl’s name in the movie we watched earlier was Olive too. Foreshadowing or coincidence? You decide.

I smiled back at him; before her arrival, the NICU Dr. had told us premature little girls have a better survival rate than little boys. Born at 23.4 weeks, she needed every single edge she could get.

Stay tuned for the final part of this series when I talk about what happened next and our NICU experience.

Here are some things that helped me during this time:

1) Doing what felt right to us.

There were so many opinions thrown at us, and you know what they say about opinions. Someone suggested that we tell our son that the doctors were wrong and that there was only one baby in my belly. Having been told half-truths much of my childhood, I was adamant that he know the truth in a way that he could understand and accept. Having that conversation with my four-year-old, knowing that the dream of him having another brother may never happen, was soul-crushing. I still have no regrets about telling him the truth. Over the years, it has left an opening for us to talk about what happened whenever he needed to.

2) Accepting support.

I recognized that people genuinely wanted to be there for me during that time and be supportive in whatever way they could. One friend left me a message telling me she was sending her cleaning lady over to my home because she knew how hard being in the hospital for an extended stay was. Another would have cards emailed to me to say hi. Others would bring me my favorite foods and home-cooked meals. Each of those gestures touched my heart.

3) Realizing Doctors are not God.

I repeat this often because it became abundantly clear to me during this time how some doctors think they know it all. Each situation is different and unique. Doctors may rely on previous outcomes, but that does not guarantee that they will have the same one. The pessimistic doctors were trying to convince me not to save my child, and had I listened to them and not my gut; I wouldn’t have the beautiful daughter I have today.

4) Remembering that there are still good people in this world and good in every day.

Life is hard; that is our right of passage that came along with our creation. It is absolutely possible to find the silver lining in every challenge. No one, and I mean NO ONE can escape pain, loss, and grief during their lifetime. There are always good, helpful people around you; you have to continue to look for them. The way I see it, I could have dealt with my situation in one of two ways. 1) I could have garnered all the attention and pity and given up hope, or 2) Chose to push through the shit storm that was thrown my way with the most massive snowplow I could find. Giving up hope wasn’t an option for me.

5) Doing my research.

In part one, I described how I doubted my doctor, yet I had confidence in him because, after all, he was my doctor. Well, we all know how that went. The second he started trying to convince me that it was ok for me to go home; I called the local doctor known for caring for multiple births. I had lost one child and was determined to do everything and anything I could to hold on to the other. I asked him millions of questions and was ready with a Plan B if my current doctor insisted on discharging me. I had no control over much of my outcome, but I was determined to fight tooth and nail in any way that I could. Taking back control in the decision making and being armed with accurate information gave me a much-needed sense of peace.