It has now been several years since I originally posted the blog below. In honor of Ansley’s upcoming 4th birthday, I decided to repost my story from the begining…
I recently read a book, Heart of the Matter, by Emily Giffin. The book began “…I find myself reconstructing those final, ordinary moments. Moments that make up our lives. Moments that were blissfully taken for granted—and that likely would have been forgotten altogether but for what followed. The before snapshots.”
I am all too familiar with the before snapshots, those days where everything was right in my world. When I truly felt my life was going absolutely perfect. I couldn’t have planned it better. Before my world was turned upside down. This week is the one year anniversary of my before. I remember every detail as if it happened yesterday. I can tell you the weather, what I did day to day, even what I was wearing.
Having given myself a year to grieve and allow my heart to begin to heal, I felt it an appropriate time to start my blog and share my life and my story. My hope is that I can raise awareness. Awareness for a condition called HELLP, which took the life of my daughter. A life that had not “really” yet begun.
** I have been a bad blogger lately. I had intended to blog often while on hospital bed rest, but writing on the iPAD without a real keyboard was frustrating. Then the boys arrived and…well…I have been a bit busy. So, almost 5 months later, I thought it is about time to share the boy’s birth story.
Chris and I had celebrated both Christmas and New Years from my hospital room and a few fairly uneventful weeks had past. I had reached the 28 week mark. This milestone I felt to be a rather large accomplishment (major developmental issues decease at 28 weeks) and I wanted it celebrated. Chris had picked up some tulips (my favorite flower) and a cookie cake. The cake read Happy 28 weeks! Of course, Chris had to explain what happy 28 weeks meant to the cake decorator; apparently it was a first for her.
An ultrasound tech I didn’t know showed up to do my daily scan a few days later. Up to this point, I had seen the same handful of techs every day. I had become really good at looking at the scan and knowing what I was seeing. I could tell if the diastolic blood flow was normal, intermittently absent, or completely absent. I didn’t notice anything out of the ordinary on the scan. Later that day, I was told the scan showed some intermittent reversal, (see Absent End Diastolic Blood Flow for an explanation) and that I would be NPO after midnight. NPO basically means no food or drink. They would come the following morning and rescan me and see what the scan shows. If it is better, I will stay pregnant; if it is worse they will likely deliver me. My favorite ultrasound tech came the next morning to do my scan. She looked over the scan from the day before showing me what they saw as reversal. She questioned the reversal and said it very easily could have been that I was lying on the cord and in the future to roll towards my side a bit and see if it changes the scan. It also could have been archiving, a term I eventually heard often, but am still not clear on. Her scan showed intermittent absence. About 30 minutes later my doctor called to tell me to eat breakfast, they would not be delivering me that day, she also expressed some question to the validity of the earlier scan.
About a week later, I had another scan that showed reversal, only this time it showed more reversal. I knew it when I saw it on the monitor. The tech said she would have to have the doctor interpret the scan to say for sure. In other words, yes, that is reversal. This time I was nervous, I thought for sure I would be having the babies. Finally the specialist came by and told me I would be NPO and they would be checking the scan again in the morning. Much like last time, the morning scan was good.
The next time I had a scan that showed reversal was the morning of my baby shower. We knew it was only a matter of time before the babies made their arrival and my wonderful girlfriends felt everyone should get to have a baby shower. They pulled the whole shower together in less than 5 days. All the doctors, nurses, and techs new my shower was happening that day. The nurses spent part of the prior day clearing out the perinatal testing room and getting it set up with tables and chairs. It isn’t often that a baby shower takes place in the labor and delivery unit. After my bad scan, I was worried I might be having my babies that day rather than the baby shower. After all, this scan was the worst one yet. My doctor was out of town, so the other doctor from her practice stopped by to check on me. As soon as she got in the nurses advised her of the bad scan. She told me, she was going to call my doctor and the specialists so we could plan the day accordingly. First she spoke to my doctor; since she was traveling and wouldn’t be back in town until that evening; even if they did decide to deliver I could still have my shower. This got me wondering how often baby showers and birthdays fall on the same day? Then she spoke to the specialist who said we would follow the same protocol as before, NPO after midnight rescan in the morning.
My doctor was there for the scan the next morning, once again it was good. I would not be delivering that day. She and I discussed the frequency of the reversal and my other labs. For some time we had been debating what would be the thing that would cause delivery. I was inching towards HELLP again or at a minimum Preeclampsia. My platelets had been steadily declining for weeks and I was getting closer and closer to the 100 line. When I first got to the hospital my platelets were 235, now they were 129. I also had higher levels of proteinuria, but so far my blood pressure was steady and liver enzymes were good. Of course, I had the blood flow issues, so the reversal could potentially cause delivery. Or, due to the blood flow issues, Baby B (aka Nolan) might stop growing in which case they would deliver me.
Mid week, I had another bad scan followed by a good scan the next day. This was becoming very routine.
The very next day, I had another bad scan. The frequency of bad scans was increasing. They again had me NPO and rechecked me Friday morning. That morning I asked them about possibly doing a growth scan. I wasn’t scheduled for one for another 5 days, but with all the reversal I felt it might be good to move it up. The tech wouldn’t do the full growth scan early, but did one quick measurement. She said they don’t seem far off, but Baby B does seem smaller. Other than that the scan was fine. Everything seemed normal except my ankles had begun to swell. Noting major, nothing more than one would expect at almost 31 week; seemingly minor. Yet, I have learned things aren’t always as they seem. One of the specialists stopped by and advised I would not be delivering that day, but he wanted the nurses to keep a close eye on my blood pressure over the course of the day. As he was leaving my doctor was walking in the room. They spoke for a minute and then she came in and told me basically the same thing. She said don’t be surprised if I have the babies very soon, maybe groundhog day (Saturday), maybe super bowl Sunday.
After my doctor left, I ordered breakfast and logged into my laptop. My hospital bed had also been my office for the last 7+ weeks. No point in using up my maternity leave before the babies arrived. It was a busy Friday, plus thinking the babies might be coming soon, I was trying to wrap up loose ends. The phone in my hospital room rang. It typically rang at 1:00 pm if I hadn’t called in my lunch order or at 5:30, if I hadn’t called in my dinner order. Who eats dinner at 5:30? But it was just after 2:30 and I had already had lunch. My room phone ringing for anything other than meals was not common. I answered and my doctor was on the line. She said change of plans; you are having the babies today. This was not at all what I expected when I answered the phone. Still shocked at this news, I mustered out an okay. She explained they reviewed everything beginning with the frequency of the reversal, not to mention when they were seeing it, they were seeing more reversal and it was becoming less and less intermittent, my labs were not good, and there is concern Baby B isn’t growing much if at all. It was becoming the perfect storm. All the reasons we had speculated they might deliver me, were happening at once. While this was not yet an emergency situation, they were not sure I would make it through the weekend without it becoming an emergency delivery. Also, she had checked the schedule and was not comfortable with the amount of staff on for the weekend. With it being super bowl weekend, should anyone call out, it could leave them short staffed and create a dicey situation. I needed 2 full teams since I was having twins and she realized the “A team” was there that day. She checked with anesthesia and they had an opening at 3:30. As she is telling me this, I glance at the clock and realize that is less than an hour away. She said she would have preferred to spring that news on me in person, but with the short timeline she figured she would call me as she drove to the hospital.
I got off the phone with her and called Chris. Luckily he answered… (to be continued)
When I was deciding on a doctor a few years ago, I decided I wanted a small practice. One where I felt the doctor(s) would know me as me and not me as chart number 125 B. I found a practice with a doctor I really like. What you see is what you get, she is straight forward yet personable.
When I got pregnant this time, I really felt she was as invested in this pregnancy as we are. She has taken every precaution possible. We have had numerous conversations about different courses of action, when they may happen, why or why not. While nobody has a crystal ball, I feel she has armed me to know what to expect and have an educated opinion in my care. So many doctors will only talk about the here and now and not give plausible scenarios of what the future may hold.
With twins and my pregnancy history, I was classified as high risk. While I still have my primary doctor, I also see a specialty maternal-fetal group. That group is made up of 6 doctors. Those doctors rotate and from day to day I never know who I will see. Over my nearly 6 weeks on hospital bed rest, I have learned the differences in each of those doctors. One is very dry, one is almost overly optimistic, one never seems 100% sure of what she is saying, one lacks any bed side manner, and one is full of information. The doctor full of information is by far my favorite of the group.
As I approached 28 weeks, one of the specialist suggested I get the second round of steroids. I knew from my conversations with my primary doctor that I can only have 2 rounds, the first dose was given to me just shy of 24 weeks. I also knew they are most effective when given within 48-72 hours of delivery, and that after 2 weeks most effectiveness has worn off. I questioned why he thought I needed them, he replied there so many unknowns, it is better to have them than not have them. I told him I wanted to wait a few days. Really I wanted to talk to my doctor who happened to be off that weekend. Later that evening, “new doctor” (she recently joined my primary doctors practice) stopped by to see me. I asked her opinion, she said she agreed, I should have the shot. At this point, I felt maybe there was something they weren’t telling me, something that would indicate I might have these babies sooner rather than later.
The following day, baby B decided to give me a scare. Typically, both babies are incredibly active, but baby B decided he didn’t feel much like moving about. In retrospect, we all have lazy days, but when an active baby becomes inactive rightfully it is cause for concern. I spoke to another specialist who told me she wanted me on continuous monitoring to be sure there was no dip in his heart rate. While we were talking I asked her opinion on the steroid. She didn’t feel it was time yet, even with the now decreased activity. The score is now 2-1 in favor of the steroid. I am still not ready to get it as I have not gotten the opinion of the one doctor I trust most.
The next day baby B was back to his normal active self.
The following Monday, yet another specialist stopped by just to check in. She had read the progress notes and before I even had to ask said she was not in favor of giving me the steroid shot. She wanted to see a reason to justify it. 2-2.
That evening my doctor finally stopped by. We talked for a while. She was less than pleased that nobody called her when baby B was “napping” all day. I told her about the debate over the steroid. She said she no, not yet. She listed off 10 quick thinks she is watching for to determine when it would be time to administer the shot.
The following Thursday, the babies scans were just okay at best. My favorite doctor from the maternal-fetal group came in to discuss the scan results. Before he left, I told him I had been taking a poll since the talk of the steroid first came up. He laughed knowing I had heard varying opinions. He agreed it was not time yet. 2-4 no steroids for me.
It has now been 9 days since the topic first came up. The steroid is only effective for about 14 days. Moral of the story, follow your gut with your medical care. Educate yourself so you can have an informed opinion, and don’t be afraid to get a second opinion or in my case a 6th opinion .
On Christmas Eve, I got the news that baby B was so stable I would only need ultrasounds on Mon, Wed, and Fri. That was some of the most reassuring news I had gotten since I arrived in the hospital 17 days ago. While the doctors are confident at some point the condition would get worse, they didn’t feel it was going to happen real soon.
To my surprise and ultrasound tech stopped my room earlier today. For a moment I was questioning what day it was. It is easy to loose track in here. But, then I recalled I did in fact have an ultrasound yesterday and it is Saturday. I told her I was surprised to see her and asked had the orders changed? She said officially, no, but she had to come up here to scan another lady and was told to scan me while she was here.
I am a firm believer that things don’t just happen by chance, and that everything happens for a reason.
Every ultrasound makes me nervous. In the back of mind I am always wondering is this going to be the one. The bad reading. The one that determines if I have to deliver the babies. She began the scan- heart rates look good, fluid levels look good, they are very active, all good signs and consistent with all my other scans. Then she asks, ” I thought baby B was the one with absent flow, I must have mis-read your chart.” I confirmed baby B is the one that has been absent. She scans over to baby B, then back to baby A, back to B and back to A once more. While she was scanning, the only thing she said was hmm.
Hmmm, really, not the reassuring comment I was looking for. She finished the scan and told me that it seems both babies now have absent flow. I asked if baby A’s was intermittent or completely absent because yesterday it was normal? To me it seems like a big jump to go from normal to absent bypassing the intermittent phase. But, she confirmed it is completely absent. Both babies scanned exactly the same.
So, now I sit and wait for both the specialist and my doctor to come see me later today and give me their thoughts on the new situation. I know it doesn’t mean delivery, at least not today. Neither baby showed any sign of reversing or any signs of distress. But, I can’t help but feel a bit uneasy. I really need them to hang on for 2 more weeks so I reach the 28 week mark.
I have spent 14 days on hospital bed rest now. And, I can honestly say I have only had one bad day since my hospital stay began. I have tried to remain focused on the babies, but day 8 sucked. It dawned on me that I had been here for over a week. It was only days until Christmas; the time of year I would typically be running all over town finding the perfect last minute gift or at least at home enjoying my Christmas decorations. But, instead I was stuck in a hospital bed; all of my independence gone. My breaking point was when they came to change my IV site (they relocate the IV every 3 days) and decided to put it in the bend of my elbow. I had already had it in my hand, my wrist, and my forearm, so elbow was next. The problem with that spot is it doesn’t feel like you can bend your arm. Luckily, the next day the IV came out. They can always put it back if I need it in the future. Since day 8, I have new level of acceptance for being here.
On Christmas Eve, the labor and delivery ward was very slow, so the nurses decided to take Chris and me on a tour. First stop the NICU. While I know there is little doubt that the babies would end up there, I was surprised to find out the nurses all knew who I was, how far along I am and that I am carrying twins. They took us straight over to the” Giraffe” which is an enclosed incubator that they use on extreme preemies. They explained all that it did as well as other equipment that might be hooked up to the babies. Numerous times while discussing processes and procedures they used the term extreme preemies which lead me to ask, what causes a preemie to be classified as extreme? The answer: a baby born on or before 28 weeks or that weighs less than 2.2 lbs.
The next stop on our tour was the mom and baby ward, followed by the operating room. There is a specific OR designated for multiples. They explained in the room each baby would have a nurse as well as the neonatologist, the doctor would have a scrub nurse or 2, of course the doctor, I would have a nurse, the anesthesiologist, Chris and me. That is way more people than I thought would be in the room during my c-section, not that that is a bad thing.
On Christmas, we talked to a lot of family and friends. There were 3 questions that were asked most frequently. 1) How do I feel? Minus being a little stiff from being in bed so much, I feel perfectly fine. 2) Do you really have stay in the hospital until you have the babies? That is a very understandable question considering my “twin due date” isn’t until March 10th. Yes, I will not be going home until after the babies have arrived and the closer to March to better! 3) Why are you in hospital? I have a condition called Absent End Diastolic Blood Flow. It isn’t the easiest condition to explain, but I found an explanation online from a nurse at the Texas Children’s Fetal Center that explains it much better than I can.
“The blood flow in our bodies continues to move forward when our heart is not beating (Diastolic). The placenta works like a pumping mechanism. It provides a closed loop circulation between the baby and the placenta…used blood moves from the baby to the placenta, it then picks up nutrients and is cleaned and then returns to the baby. Doctors look at 3 measurements in a fetus to determine fetal well being… the cord Doppler’s are one of those measurements. When their heart beats and there is a balance of pressure between the baby and the placenta on relaxation of diastolic, blood continues to move forward, when the placenta is working really hard to get that blood flow back to the baby it may appear absent in forward flow. It should be considered a yellow flag… it is concerning but just needs to be watched. When it reverses it is a red flag and is very concerning.”
My Doppler readings on baby B have varied between intermittent absences and absent (mostly absent, but no reversing). I have learned they measure in 3 places along the cord; at the placenta, mid way, and close to the babies’ abdomen. They also check for other signs that would indicate baby B isn’t getting everything he needs. They look for activity level. My babies have no issues there; they are very active babies. They look for amniotic fluid levels, again no issues. And, they frequently monitor the babies’ heart rates. Both babies’ heart rates are in the 150s and 160s. All in all, I have very healthy babies. They just need to continue to cook for a bit longer!
Every pregnancy comes with milestones; hearing the baby’s heart beat, the end of the first trimester, feeling the first kick and so on. I have been anxiously awaiting yet another milestone- twenty four weeks. Twenty four weeks hold a lot of significance for me. It is the point in pregnancy in which medical science has determined a baby can survive outside the womb. In high risk pregnancies, you will hear it referred to as V-day or the point of viability. But for me, it is also when I lost Ansley.
This pregnancy has not been an easy one for me. I haven’t enjoyed it the way most expecting mother do. I haven’t started working on the nursery or shopping for the babies. We haven’t picked out names, or talked about plans for the future. Chris and I decided early on once we hit 24 weeks, we would get started on planning for the babies. But the idea of planning and verbalizing hopes and dreams before that point was too scary.
Today, I am 24 weeks. This day comes a relief and a reminder. Each day from this point forward is a new day, one I didn’t experience in my pregnancy with Ansley. A painful, yet comforting thought all at the same time.
I know this pregnancy will have a better outcome. I have said all along they are watching me closely. Closely, took on a whole new meaning Wednesday evening. Twelve, Twelve, Twelve, the day I was put on hospital bed rest for the remainder of the pregnancy.
I will spend, what hopefully will be, a very long time in this hospital room. My current goal is 28 weeks, January 12th to be exact, but I am pulling for something closer to Valentine day. Christmas will be a little different this year, as will New Year’s, I will miss seeing my dog, sleeping in my bed, and enjoying the outside. But, in the grand scheme of things, all minor sacrifices in hopes of having 2 healthy baby boys.
The reason for the hospital bed rest is a little thing called intermittent absent diastolic blood flow. What that means is when my heart is pumping, baby is getting blood and when my heart is at rest (in-between beats) the blood should continue to flow through the umbilical cord to the baby. But, sometimes, for some reason, it cuts out for a second. While this sounds problematic, it really isn’t. I have a very minor case which isn’t affecting the baby in any way. But, with my history, my doctors decided it wasn’t worth taking the chance. HELLP syndrome is linked to a weak placenta and this condition is also linked to a weak placenta. In the event it gets worse, and turns into reverse blood flow, it could cause some distress to baby. The level of distress would determine if we would have to deliver, so that the baby could get the medial intervention needed. There is equally as likely of a chance that it will not get worse or it could possibly resolve all together. There are a lot of unknowns, so we are taking the better safe than sorry approach.
The other benefit to being in the hospital is the frequent testing for me. When I developed HELLP syndrome, it came on quickly and without normal symptoms. This time, should I start to develop Pre-Eclampsia or HELLP, we would know very early.
I know I am probably in trouble with a few of my friends and family members for neglecting to share a little detail about my week. My intentions were good, no need to alarm anyone, but it is amazing how “things” have a way of getting out. (For the record, we did tell our parents.)
On Tuesday, I had my routine visit with the specialist. I thought the visit was going very well. During the growth scan, they were able to see everything that was not clear a month ago. The babies were incredibly active. In fact, it was as if we were watching a WWE wrestling match. Ahhh, the things I have to look forward to with two boys. They are at it already!
The ultrasound tech wrapped up and soon thereafter the doctor entered the room. She said they were able to see pretty much everything they needed to; but, at the end of the scan they used the Doppler to check the blood flow through the placenta, to the umbilical cord, thus to the babies. Baby A had normal blood flow, but with Baby B they couldn’t find what they were looking for. They referred to this as absent blood flow. Clearly, it wasn’t totally absent since the baby had a good heart beat, but it was reason to cause concern. She said that, coupled with my occasional shortness of breath, was leading her to think she might need to send me to the hospital for more tests. She told me she was waiting on my primary OB to call her back to get her opinion.
Just then the nurse let her know my doctor was on the line for her. I looked at Chris and said, “looks like we are going to the hospital.” I knew my doctor, who has been very cautious with me, would not bat an eyelash at sending me.
Sure enough, moments later I got my confirmation. The only way they could get the tests they want and get them in the timeframe they needed, was to admit me. So off to the hospital we went.
It was a little creepy when they opted to put us in the exact same room I was in with Ansley, but a room is just a room. When the nurse staff realized it was the same room, they quickly offered to change my room. At the end of the day, they all look the same.
Over the next 30 hours, I had countless tests run, including another ultrasound looking at blood flow. The second ultrasound offered much better results and every test they ran on me came back problem free!
Both babies are on the small side, especially Baby B, so they are going to continue to watch me closely. They also decided it was time for official bed rest not just work from home status. Guess I will be doing my Christmas shopping online. But, all in all, the trip to the hospital confirmed so far everything is looking good.
Going into this pregnancy, I thought the silver lining to being extremely high risk was that I would get to find out what I was having very early. The Maternal Fetal doctors use ultrasounds with higher resolution and give a clearer picture. And, I was having very frequent ultrasounds at my regular OB appointments too.
Finding out at 14 – 15 weeks would be great. I could start planning the nursery theme/ color scheme and even start a registry long before any potential bed rest orders.
At 14 weeks and 3 days I had an ultrasound, and much to my disappointment while they had an idea on Baby A’s gender, it was far from definitive and Baby B was not willing to cooperate at all.
I knew I had another appointment with my OB a week and a half later, and I sure I would find out then. After all, I found out at 16 weeks Ansley was a girl. So I was sure I would know then. Turns out my OB was out of the office and I saw another doctor at the practice, who didn’t feel she needed to ultrasound me again so soon.
Now at 18 weeks and 3 days, I return to the specialist for another growth scan. Fingers crossed both babies cooperate and I will soon know if I am having boys, girls or one of each.
I needed to get out of the office for a few minutes today, so I popped over to a cute little gift shop nearby. I had no intention of buying anything. Just a change of scenery. As I looked at all the pretty little things, a picture frame caught my eye. It read, “Have Faith in Your Dreams, and Someday Your Rainbow will Come Smiling Through” ~ Cinderella.
Everyone loves a good Cinderella quote, but it is interesting how many things now have a different meaning. It was about 8 months ago that I first heard the term Rainbow Baby. I was at my support group, Rock Goodbye Angle. I wasn’t 100% sure of what it meant, but I thought I had a pretty good idea. Of course, when I got home I Goggled it. According to Urban Dictionary,
A “rainbow baby” is a baby that is born following a miscarriage, stillbirth or neonatal death. In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. The storm (pregnancy loss) has already happened and nothing can change that experience. Storm clouds might still be overhead as the families continue to cope with the loss, but something colorful and bright has emerged from the darkness and misery.
Ever since I learned that term, I have been looking for a rainbow…literally. If the sun comes out following a storm I will go outside and look for a rainbow. I am yet to see one. I feel like when I do, it might just be a sign that things will be okay.
We still don’t know if I will be able to have another baby. The risks might be too great. We hope to have those answers soon. So for today, maybe, just maybe the picture frame was put there just for me as my sign. I may have to wait a little longer to see my rainbow, but I will have faith.