Tag: infant loss

Amazing Grace

Grief and Infant Loss

When we found out I was carrying twins, I was incredibly nervous about how difficult the pregnancy would be. I typically have severe morning sickness all day, every day for the entire nine months. I’ve had pretty major complications with every pregnancy. We lost our first baby, Azaliah; with our firstborn, Mason Paul, I had pre-eclampsia (BP got up to 240’s/220’s before he was born); I had cholestasis with #2, Jonah James, as well as a precipitous delivery (under 3 hours total) that ended up with him being born at home, unplanned, at only 36 weeks 4 days (Daddy delivered him on our bathroom floor and that’s a story for him to tell 😉); our third born and only girl, Eliana Grace, was also a precipitous delivery and I almost hemorrhaged as a result of it. So because of all my history, a twin pregnancy was just a scary thing for me. Much to my surprise, I did not have the extreme sickness with these little guys like I had with the previous 3. I was so thankful for that mercy from above because as I said before, we had 3 other babies at home to look after that at the time were ranging from 11 months to barely 4 years old. I couldn’t really afford to be so sick again.

Initially we weren’t able to detect the thin membrane and I knew the complications of a twin pregnancy in which the babies shared a sac were pretty serious and those mommas end up admitted for 24/7 monitoring starting at 24 weeks due to the very high risk for cord entanglement.  We asked for prayers that they would find a membrane separating them and once we were able to find this a week later, I felt a huge amount of relief. They were officially monochorionic-diamniotic (mono-di) twins.  I had no idea, even as a nurse, that there were incredibly serious issues that could go on with mono-di twins as well. Because of the type of pregnancy it was, I was deemed “high risk”, which meant I’d be seen a minimum every 2 weeks throughout the pregnancy. That also meant we got to see the babies a lot more than a normal singleton pregnancy.

Baby A is Luke Oliver

And baby B is Asher Luke

It never gets old to see your sweet baby on the screen of the ultrasound and watch as they grow and change with each subsequent visit. It never gets old to hear a healthy heartbeat at each visit either and it never gets old to see TWO babies playing together in the womb. The boys were head to feet majority of the time and we would watch them kick one another in the head and then reach out and hit or grab at the other.  At one point in the pregnancy, the high-risk doctor (MFM) I was seeing suspected I may be showing signs of early Twin to Twin Transfusion Syndrome (TTTS) but that cleared up by the next week.


Asher is caught with his feet against Luke’s head!

I also was put on bed rest for about a month due to high blood pressure and my cervix shortening too early. But once again, those issues cleared up and I was able to go back to our normal routines.  Each week that passed, I felt a greater sense of security about our future as a family of 7. We celebrated every little milestone along the way. 20 weeks. 24 weeks (they were officially viable!) 28 weeks (chances of survival without severe-lasting complications greatly went up here!) I really wanted to make it to 36 weeks before delivering.

Around 29.5 weeks I’d been having some pretty serious contractions and mentioned them to my OB. She sent off a fFN test (fetal fibronectin) and it came back positive, so the next day I went in for my first of 2 steroid shots to help the boys lungs mature a little quicker. This was on a Wednesday. Thursday morning I woke up and my stomach was HUGE. Not like twin pregnancy in the third trimester huge, but H-U-G-E. I literally had grown over an inch overnight. It was so big and rock hard and breathing hurt. Friday morning, I had a NST (nonstress test) appointment, so I went in and they couldn’t get both babies on monitors so they did an ultrasound and found A LOT of extra fluid. She said the fluid was in both sacs. We tried unsuccessfully for over 1.5 hours to try to get the NST done and finally decided to reschedule it for Tuesday. I went for my second steroid shot that afternoon after leaving the NST appointment. Monday morning I had an OB visit scheduled and we discovered that I had gained 12 lbs since the Wednesday before when I’d been in the office for the fFN results. My OB suspected pre-eclampsia so she sent me into the hospital to be evaluated for that. Once again, they were unsuccessful at getting both babies on the monitors because of all the excess fluid, and once again an ultrasound revealed what looked like excess fluid in both sacs. My pre-eclampsia work up came back normal, so they sent me home and told me to keep my appointment the next afternoon for the NST. Thankfully my momma flew in from out of state as soon as she knew I was going to the hospital for a pre-eclampsia workup so that she could keep the other kids for us in case I ended up being admitted. The next morning I began having consistent contractions once again. I continued to go about my day as planned until around noon, at which point I decided that I needed to be seen, so instead of waiting for my 2:30 appointment, I went into the MFMs office. I didn’t want to waste anyone’s time by going back into L&D just to get sent home again and I honestly thought the MFM would tell me my contractions weren’t real and send me home too. I got there and they immediately sent me to L&D; should have saved myself some time and gone straight there. Once I got into triage, they discovered I was dilated to a 5 whereas the day before I wasn’t even a 1. Excess fluid can cause preterm labor, and this is exactly what happened.

Both babies were head down and doing great, so the doctor on call wanted to get me settled into a L&D room for a vaginal delivery, which up until the week before this I had insisted on at least trying for as long as baby A was head down. When the excess fluid issue began, I actually told Matt just before bed one evening that I had a feeling I wouldn’t make it another week and that I was also uneasy about a vaginal delivery now. I didn’t know why I was uneasy…..I just knew that I was. So when the doctor voiced this plan, I quickly stopped them and said I wanted a C-section. He asked me why and reiterated that I was a perfect candidate for a vaginal twin delivery. I told him I just had a gut feeling that I shouldn’t and he actually laughed and said “oook.” We waited for my OB to finish clinic for the day and get up to the hospital, all the while both babies were still doing amazing. I was nervous, but mostly just about them being born so early. I was only 30 weeks 6 days. What kind of troubles would they have to overcome? How long would our family be separated? We had JUST signed a new lease the DAY BEFORE this and given notice at our current home! We were moving across town and I was having major surgery and our twin boys were going to be in the hospital for who knows how long!

The rest of this story deserves a trigger warning. Even for myself, sitting here typing it out has me shaking. It’s also not a story many people have heard or know in full.

Once my OB arrived, I got prepped for surgery. Once again, both babies were doing great just before they took me back to the OR. About 20 or 30 minutes passed between the last time we were checked and the moment they were delivered. Once they opened me up, I heard the on call doctor, who was now assisting ask my OB “did we know about the twin to twin??” She told him “no” and I honesty didn’t think much else of that. They got baby A (Luke Oliver) out and I remember hearing the nurses reminding them to do delayed cord clamping and he sternly told them “that’s not a good idea, someone get this baby so we can get the other out.” Again, I didn’t immediately think anything of it. Matt remembers him then saying “and here’s the big one” when they got baby B (Asher Luke) out, but I don’t remember hearing that at all. The next memory I have is suddenly hearing the nurses/NICU doctor call for epi (epinephrine). Now, I’m a Registered Nurse myself with several years of ICU experience. I know what epi is and what it’s used for. I know that in a normal delivery, epi should never need to be used. Even in a “normal” preterm delivery, it should not be needed.

Now the panic set in and I asked what was going on. My OB stood up and calmly said “Sara, the placenta tore away from the uterus and baby A has no heartbeat. But they are doing everything they can to get him back. And we are working on you to make sure you don’t hemorrhage.” I remembered screaming “no!” And then I repeatedly said “no, no, no” over and over and over. I asked Matt which baby it was, although my Dr had already told me Baby A. But I just didn’t want to believe my little Luke was fighting for his life. I also didn’t want to believe my sweet Asher was either. I wanted them to say “someone else’s baby. Not one of yours.” And yes, I realize how horrible that makes me sound.

Matt began to sing Amazing Grace to me and stroke my head to calm me down and what seemed like 2 minutes later, the neonatologist came to get Matt. He stood by Luke’s side as they called a time of death and he sang to him. Jesus Loves Me has been the first song all of our babies have heard. It was the first song Asher heard as they pronounced his identical twin brother dead. I was a mess. I still am honestly. But in those moments, God truly did provide Amazing Grace for us. He held us up when we couldn’t even stand. And instead of Luke hearing his daddy sing Jesus Loves Me, he heard Jesus say “I love you.”

God’s Amazing Grace is what has kept me going for the last 8+ months. It is only because of Him that I’m still breathing. Only because He picks me up each and every day.

My OB came by my room the following day and we chatted for a bit. I learned that our boys had both Twin to Twin Transfusion Syndrome (TTTS) that came on very suddenly and very severely; as well as Twin Anemia Polycythemia Sequence (TAPS). Whereas they thought the fluid was in both sacs, it was actually only in baby B/Asher’s sac. The high pressure from the extra fluid caused the placenta to tear away from the uterus sometime in the last 20-30 minutes before delivery and Luke’s blood supply was cut off. If I had not listened to that nudge from God and had continued to insist on having a vaginal delivery, both Asher and I would be dead as well.

I don’t know the plans God has for our boys, but He has big plans for them both. Luke’s little life has touched so many already, and I pray that it will continue to do so.

What’s in a name?

Grief and Infant Loss


I thought I would explain the story behind our blog name for my first post. “Broods” and “Bible” are pretty easy to figure out to mean family and faith, but the butterflies portion likely isn’t so cut and dry unless you have stood where we do and think along those same lines. First, a little back story to it…..

Last summer I read an article on Facebook about a momma that was advocating for hospitals in the UK to place a purple butterfly sticker on bassinets of babies that were part of a multiple pregnancy in which one or more babies were lost. The butterfly sticker was to alert other parents as well as hospital staff members to a very sensitive matter: the immense grief of losing one (or more) infant while still caring for a living baby as well. I remember we had just found out about our identical twin boys, Luke and Asher, shortly before I read this article and it hit me how terribly sad this situation was, however, the momma written about in the article lost one of her sweet girls to anecephaly, which we knew already our babies did not have. In fact, our little guys were perfectly healthy, so aside from being incredibly heartbroken for this momma and daddy, it wasn’t personal to me because we were already passed that initial “safe zone” and had reached the second trimester with two healthy babies. You see, early loss was a loss that I connected with already and knew could happen to me because it had happened to me; but late loss was a different story. And even more that just a late loss; loss of ONE baby was an entirely different story as well. Again, even though I was carrying twins already, I just kind of assumed that either both babies would make it or both wouldn’t except for the situations like this momma’s where one had an abnormality that was always fatal.

Fast forward to September 27, 2016, I was having contractions. Although they were completely painless for me, I knew they were also very regular and having had two very fast deliveries, I knew I needed to get into the doctor to be seen right away. I had gone in the day before due to a couple of issues, but was eventually sent home as the contractions I was having weren’t doing anything and the other issues weren’t immediately dangerous or needing to be addressed. I honestly thought that I would be sent home this day as well. However, I got settled in and the doctor on call came by and discovered I was dilated to a 5, which meant our babies were on their way that day for certain. I was only 30 weeks and 6 days pregnant, so we knew that meant a long NICU stay for both boys. What we didn’t expect was that only one of our sweet boys would make it out of the operating room alive. All of the issues we’d been having as well as the events of that day are for another post, but suddenly that story I’d read about several months before had become our reality. Having our survivor, Asher, in a big unit full of other LIVING twins was so difficult. Seeing only his name on his bassinet was really hard for me because spread all throughout the NICU were bassinets with “twin A” or “twin B” on them. We should have had two bassinets with babies in them. Instead, we only had one. We are so thankful for that one, but having Asher here didn’t and won’t take away the pain of losing Luke. I longed for Asher’s bassinet to say “twin B” in addition to his name plaque. Or even for a purple butterfly sticker….

So because of this article we’d read previously, the butterfly kind of became our symbol for Luke. I originally chose the butterfly because of the article, but since then it has become so much more for me. I love seeing butterflies out in the world, whether real or otherwise, but we definitely in no way think that Luke has taken the form of a butterfly and come to say hello or even that he has sent them as signs to us. However, I do know that God knows that we have chosen the butterfly as his symbol and believe that He will randomly put them in our lives as a reminder of His love for us and for Luke. When I see a butterfly, I feel God’s love for me despite my pain. I know that He grieves with me for my sweet baby, but I also know that Luke is in heaven; happy and whole with Him. I miss my baby every single day, but it’s truly a help to me knowing these things, so I love seeing butterflies when I’m out and about.

I also like the butterfly as Luke’s symbol not only because of the connection with twin loss, but because I feel like I am very much like the butterfly. Butterflies start out as caterpillars and must go through the process of metamorphosis to change into the beautiful creatures they are. In my opinion, caterpillars aren’t the most majestic or graceful creatures to begin with, but God created them to change who they are through a process that isn’t terribly appealing and probably even a bit painful. I mean, who wants to stop eating, wrap themselves in a casing and hang out (without eating) for weeks, months, or even years while their bodies undergo rapid and massive changes?! Losing Luke has been a continuing point for my transformation from a self-centered, selfish, high-strung momma, wife, friend, and human being into something hopefully much more beautiful than I ever would have become otherwise. It has been a very painful experience to go through this rapid growth and change; but in the end, a caterpillar’s purpose isn’t able to be fulfilled without being transformed into a beautiful butterfly.

~Sara

(double ribbon for Twinless twin awareness was created by a sweet momma on a Parents of Twinless Twins support group page and is free to use for this cause)

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