Tuesday, May 21, 2013
Today, at 26 weeks and 5 days I am still here. Three weeks after my world came crashing down around me, we are still standing (metaphorically speaking of course, there is not a lot of standing going on around here). I still have a hard time imagining 28 weeks, but we have made it past 26 and 27 is within our sights. I am still not taking it for granted that we'll make it there, but it seems genuinely possible and the fact that it's a very real possibility gives me so much hope. I don't know if we'll make it to 28 weeks (my big goal) or even 27, but we have made it three weeks past the day when I was sure my babies weren't going to make it. I am still not sure that they will, but I am hopeful and that is a good feeling.
Will our future be difficult? It undoubtedly will be very, very, very difficult...but I have learned a lot about myself and about the love that I already hold for my boys and I think that those lessons and that love will help me to make it through whatever comes next. Whether the next three weeks are spent on hospital bed rest or in the NICU, I know that somehow I will make it through them. I will have my moments/hours/days when everything feels unbearable, but with God behind me and my husband by my side, I know that I will make it through.
So here is to three weeks of pregnancy that I didn't think I would get to have! Three weeks of baby kicks and squirms, three weeks of babies growing and developing, three weeks full of support from friends and family all over the world, and three weeks full of prayer and blessings!
Monday, May 20, 2013
Nathan and I celebrated at midnight with cupcakes before bedtime. It was really special since he had planned to go spend the night at home that night, but ended up coming back with cupcakes instead.
I was put on the fetal heart rate and contraction monitors from 3 am until 6 am. The babies didn't appear to be in distress. I was having more contractions than usual, but they were random and didn't suggest labor yet. Ultimately, the doctors decided not to do anything about the bleeding. It wasn't enough blood to suggest a placenta problem. Chances are it was due to a change in my cervix...which is not really a comforting answer when you pray nightly for your cervix to stay closed. As time has passed, the amniotic fluid is returning to a pink tinged color which makes me hopeful that the bleeding has stopped. The boys are looking good whenever they are monitored. I am still having more contractions than I had been before all of this started. They aren't painful, but feeling my stomach tighten so often has me really worried. I had my blood drawn again today to check for signs of infection and my white count and CRP were just fine. My temperature is staying down and my belly isn't tender. It is just an awful feeling to know that even though I am not showing signs of infection that they would not stop preterm labor since that in itself would suggest that I was infected...ugh. Heaven forbid that preterm labor could just be because I am carrying twins and at a higher risk for it...
The situation is so incredibly frustrating, to know that there is nothing that I can do to help my boys. Every doctor has something a little different to say, but they all seem to agree that once something starts to happen...that's it. Luckily the bleeding wasn't enough to trigger the "deliver the babies now" series of events, but I certainly feel like we are walking on shaky ground these days. If only I wasn't having contractions, I could feel better about the bleeding slowing/stopping. I cried a lot yesterday...like a ton to be honest. And of course, the nurses want me to "take something for it." I declined. I am still pregnant and I do not want to put any extra and unnecessary chemicals into my system. I also don't think that my response to the situation was anything other than normal. How could you not cry? I am sitting here waiting for something bad to happen for weeks and then something bad happens. Corbin and Ronan mean more to me than I can even explain. I can hardly remember what life was like before I fell in love with this little wigglers in my tummy. They are my babies, not just some numbers or statistics. Of course the very real prospect of them being born at 26 weeks is enough to make me lose it for a little while. I just needed my day to cry. Today I am still scared and stressed, but my eyes have stayed dry and I am trying to find the hope again. I just needed to have my weak moment.
I feel like it is worth pointing out that while the odds at 26 weeks are pretty decent in general, that my little boys odds aren't quite as good as they could be. Boys generally fare worse than girls in the NICU, multiples fare worse than singletons in the NICU, and Caucasian babies fare worse than African-American babies in the NICU. We also aren't sure how long Ronan has been low on amniotic fluid...so his lung development might have been compromised during the critical stage between 20 and 24 weeks, which would lower his odds as well. The numbers game is awful, I don't know why I torture myself by thinking about it so much...but it's always there in my head.
For now, we will continue to try and stay hopeful. We are now 26 weeks and 3 days. Hopefully we can get to 27 and after that we will think about 28. For now we are praying that I don't show any signs of infection or go into preterm labor. All we can do is hope and pray and sit and wait for our fate to be decided for us. It has certainly been a lesson in faith, patience, and letting go of control. Hopefully I will be able to pull it together and get back to trying to enjoy this amazing miracles growing inside of me.
Due Date: August 22, 2013
Baby is the size of: An English Hothouse Cucumber?? (Length this time at about 14 inches)
Emotions: It is really hard to even know how I feel right now. Lost might be the most accurate description.
Notable News or Events: Hitting 26 weeks!! Failing my 1 hour glucose tolerance test, uh oh. The previously discussed complications...
Wednesday, May 15, 2013
- Received First Steroid Shot
- Started on IV Antibiotics
- Started on Indocin, an anticontraction medicine to try to prevent labor in order to get the steroids in my system.
- Growth Ultrasound
- Ronan: Confirmed that Ronan's amniotic sac had ruptured. Estimated weight: 1 lb 9 oz (69%), fluid level at 3.1.
- Corbin: Confirmed that Corbin's amniotic sac didn't appear to have ruptured. Estimated weight: 1 lb 10 oz (75%), fluid level at 3.2. ek
- Transferred first to OB Special Care and then Labor and Delivery
- NICU Consult
- Transferred back to OB Special Care
- Start Daily Monitoring (1/2 hour or more with both babies heart rates and contractions being monitored)
- Received Second Steroid Shot
- Nathan's aunt Susanne visits us at the hospital and brings us flowers from his extended family.
- My mom arrives to stay a few days at the hospital with us.
- Switched over from IV to oral antibiotics.
- 24 Weeks!!
- Steroids are all officially in the boys' systems (72 hours after first shot)
- Receive tDAP shot to try to give the boys' some immunity to Pertussis.
- Mom is still here.
- Finally Given shower privileges.
- Stop Indocin: If I go into labor, they will not stop it at this point because it is a strong indication that there is an undetected uterine infection.
- Mom is still here.
- Nathan goes back to work for a partial day.
- Susanne visits again and brings me a crochet pattern book and some word searches to pass the time.
- Quick bedside ultrasound confirms that both boys still have some fluid.
- Nathan's mom, aunts, and grandma visit us at the hospital.
- We publicly announce the boys' names on Facebook!
- Mom has to leave to go back home.
- First night alone in the hospital (Nathan and my mom had been taking turns up until this point)
- Weekly blood work shows no sign of infection!! Slightly anemic though, started on twice daily iron supplements.
- Fluid scan ultrasound shows that Ronan is down to a fluid level of 1.86, but Corbin has increased his fluid. Boys look good otherwise.
- Nathan's mom visits and brings us a gift bag with 25 items for 25 weeks!
- My sister Kathy makes the trip down to visit us and stay for several days!
- 25 Weeks!!
- Our friends Jessica and Joey visit us on their way to sign in for their c-section for their new son.
- Kathy has to go back home. :(
- Spent my first Mother's Day with Nathan. He got me a beautiful mom & twins necklace.
- Officially done with my course of antibiotics and now we just have to cross our fingers. If I start showing signs of infection, the boys will be delivered.
- Weekly Blood Work shows no sign of infection.
Monday, May 13, 2013
I was wheeled over to the OB Special Care ward of the hospital where they put me in a room. It seemed like there were people everywhere. I don't actually know if it was really as chaotic as I remember it, but it was incredibly overwhelming at the time. The nurse and doctor from triage came with me and there was at least one nurse from special care. Within what seemed like just a few minutes an ultrasound tech arrived with a portable machine. My situation was considered too "unstable" for me to be taken downstairs for the ultrasound.
I don't know how to describe how I felt during that ultrasound. It was a complete mix of emotions at the time. I was so relieved to see them both moving and they looked so much bigger than the last time I had seen them. I fell in love all over again, the same way I do at every ultrasound I've ever had. Those were my babies and they were clearly doing ok in there. Yet, that was part of what made it so hard. Those were my babies and they were clearly alive...yet they were telling me that I would likely go into labor either that night or within 2 days. My strong, living babies would come too early and stood a good chance of dying. I paid extra close attention to the ultrasound though, because I was so scared that it would be the last time that I would see my boys alive. Ronan's estimated weight was approximately 1 pount 9 ounces and Corbin was estimated at 1 pound 10 ounces. They were in the 69% and 75% for their gestational age. The tech and doctor were surprised that both babies had a similar fluid level. Ronan had 3.1 cm of fluid and Corbin had 3.2 cm. The doctor was so surprised by this that she did an additional test to make sure that my water really had broken. She ran a test called "amniosure" which is new, but basically foolproof. It came back positive as well. Since no one knew how stable my condition was at the time, they wouldn't let me out of bed to use the restroom...so I got to suffer the indignity of using the bedpan while my husband, the ultrasound tech, and the doctor stood on the other side of the curtain and a nurse helped me. It's funny that this stands out in my mind, but I think it's because it added to my fears that the babies would come at any minute.
They decided that the safest option for the night was to transfer me over to Labor and Delivery for the night to be monitored in case I went into labor. So, I was wheeled down the hall and put in a delivery room. The L&D resident talked to me, but I don't remember anything that she said at all to be honest. I was receiving IV antibiotics and was also given a different type of oral antibiotic as well. I was on IV fluids since I wasn't allowed to eat or drink anything just in case. I did finally get bathroom privileges though, so that was a relief.
The moment that will stand out the most in my mind forever though is the consult that we had with a resident from the NICU. He told us that the odds of the babies surviving at their gestational age was 52% and that if they did survive, the odds of "significant morbidity" was above 90%. He then went on to list all of the possibilities included under "significant morbidity." He wasn't American and I couldn't understand him particularly well to be honest. I don't know if it was his accent, his very cold and logical mannerisms, or that I was completely overwhelmed altogether. I do remember hearing "cerebral palsy, brain bleeds, blindness, deafness, chronic lung disease" and a host of other things. I clung to that 52% and let the rest of it wash over me. I literally could not process what he was telling me. To be honest though, he made no effort to really explain what the numbers he was spewing out meant. I couldn't even wrap my head around what the word "morbidity" meant in my state of shock.
After he left, the on-call doctor from my OB Practice came in to speak to us. She is the one who told us that the NICU resident's report stated that the babies had a 4% chance of intact survival. Intact survival basically means survival without significant physical or mental deficits. So, each baby had a four percent chance of living and not being significantly impaired or disabled. Suddenly the 52% that I had been clinging to in my mind didn't seem like such a life raft anymore. She asked what we would want to do and I said that I wanted life saving intervention. I wanted them to do everything in their power. I don't know if that would have been the right decision. Maybe it was selfish to want the babies to live no matter what the cost in terms of quality life might be. Luckily I didn't have to find out if that was the right call or not. That conversation and those that followed with my husband still haunt me. We were both in shock and I don't know if either of us can be held accountable for what we said and felt at the time, but I do know that he didn't necessarily agree with my decision. He told me that he would rather be dead than significantly disabled and I told him that as long as I wasn't a complete vegetable, that I would want whatever chance there was to live. Since that night, we have come to an agreement that any chance at life is better than none and he has reassured me time and again that he will love our boys no matter what the outcome is, but that night and the doubts it created will haunt me forever. I honestly don't know who was right. Is there really a right decision when the odds are so poor? Was I being selfish by being willing to put the babies through so much suffering in the NICU and after for such a slim chance at life? Maybe...but it was the only choice that I felt like I could make.
The tough decisions didn't stop there. The OB also brought up a hypothetical situation unique to twins where one twin has ruptured but the other has not. What did I want to do if Baby A (Ronan) was in distress and Baby B was still doing well? pPROM carries with it a significant risk of cord prolapse and other cord accidents that can cause a baby to go into distress and ultimately pass away in the womb. The lack of fluid makes these events more likely. In a singleton pregnancy, they would choose to deliver the baby in distress every time to save his or her life. However, with twins this early on...it would be putting Baby B's (Corbin) life in significant danger to deliver them. Ultimately, I was asked to decide whether I would be willing to let Ronan pass away in the womb if he went into distress in order to give Corbin the best chance of survival. Keep in mind the statistics that I just told you about the odds of survival outside of the womb. How can a mother make a decision like this? It's even worse than the first decision. I love both of my babies, equally and without reservation. I deferred to the recommendation of the doctors...I would have let Ronan die in order to try to save Corbin. There was no guarantee that either of them would live if they were born. I think I will always feel guilty about making that decision. Logically, I know it was the right choice. The option that would have given me the best chance of bringing at least one baby home with me...but being forced to make that decision has probably permanently damaged the image that I have of myself. I might be asked to make the same decision again too...and now I don't know what I would do. The numbers are so different today than they were then that I don't think I could make the same choice. Yet, not making it could ultimately cost me both of my sons.
Nobody tells you that being a mother might require you to literally make life and death decisions about your children. When faced with the thought of your babies leaving the hospital in two tiny caskets instead of the car seats sitting in your nursery, somehow you make the impossible choices. I don't know if I made the right choices in that moment. I don't know if there really were any right choices to make. I do know, however, that I have been forever changed by those hours. Not for better or for worse, just changed.
As I sit here on day 13 of hospital bed rest, it is starting to get hard to remember everything that happened in the beginning of this journey. I don't know if it's "pregnancy brain" or just a coping mechanism, but the details have already begun to fad. I don't want to forget where we started or what those first few days felt like, so it is clearly time to write this post.
**Warning, there will probably be episodes of TMI (too much information), there will parts that are very sad to think about, and this is going to be a very long post**
As I have hinted at earlier, I had actually been having some thin, watery discharge for a couple of weeks before the main event. I went in on 2 separate occasions (once to the hospital and once to the doctor's office) to make sure that everything was alright. Both times (at right around 20 and 22 weeks) they tested for amniotic fluid and it came back negative. The last visit was to my doctors office, only 8 days before I ended up being hospitalized. I saw one of the other doctors in the practice and she said that I shouldn't be worried, but to come in again if it changed in some dramatic way. I had honestly convinced myself that the weight of the twins on my bladder was causing some incontinence issues...but in my heart I knew that it didn't feel right. I can't say for certain that I was actually leaking amniotic fluid, but it was very, very similar to the leaking that I am now experiencing except in smaller amounts. For the sake of sticking to my medical records, I will officially say that the rupture of membranes didn't occur until 23 weeks and 5 days when I went to the hospital...but when I really think about it, I think that there's a good possibility that it was before then.
Tuesday April 30th, 2013 was just a normal day at home. I spent the morning hanging out around the house and taking it easy. It was a lovely day outside, so I decided to go sit on the porch and throw Thor's ball with the Chuck-It. That's right, I was sitting down and used the Chuck-It so that I didn't have to bend over to pick up his ball. As I was sitting there, I felt the small gush (or leak I guess, it's a little hard to explain...but it definitely wasn't the waterfall that people imagine) of fluid that I had grown accustomed to in the previous couple of weeks. Honestly, I couldn't tell if I had peed myself or what had happened. I went to the bathroom to change my pad and realized that the fluid on my pad was pink instead of clear like I was used to. My heart immediately sunk, something was definitely wrong. I tried to convince myself that it was a urinary tract infection, but I knew that the fluid wasn't urine and that there was no way that I should have this light pink/peach colored watery discharge. I called my husband first and told him to come home since we would be sent to the hospital as soon as I called my OB's office. Then I called the office and talked to a nurse, who sent us to OB Triage at the hospital (like I had predicted).
Nathan picked me up at home and we drove over to the hospital (about a 40 minute drive from our house). It was a really quiet drive, but we were both really calm. We had already been seen for something very, very similar to this and we both just assumed that we'd get sent home and it would all be ok. I had this uneasy feeling in the pit of my stomach, but I am a worrier and that's not particularly unusual for me. I have been way more hysterical over little aches and pains than I was about this. Looking back it is sort of ironic really.
We got to the hospital and were brought into one of the OB Triage rooms. A nurse hooked us up to the monitors and we got to hear both babies heartbeats at the same time for the first time ever. I remember thinking that it was really cool that I could hear it when they would kick me. I kept saying that I was sure it was probably nothing, but it was better to be safe than sorry, right? I tend to be a little apologetic and I honestly thought I was wasting their time. They did a sterile speculum exam, took some swabs, etc. The usual stuff that they would do in this situation. The doctor said that she saw some fluid pooling by my cervix and that the outside of my cervix was bleeding a little which was why the fluid was pink. My cervix was visually long and closed though, so that was a good thing (they won't manually check to see how dilated you are if they suspect that your water has broken because of the risk of infection). Anyways, they did two tests for amniotic fluid then and both came back positive. The pH strip that they use was consistent with amniotic fluid and there was "ferning" under the microscope. When I heard the words "It is amniotic fluid," my world crashed around me. There was a second of complete shock and then came the realization of what this really meant and the tears started flowing.
I was immediately devastated and sobbing. I assumed that this meant that I would have to deliver and because I wasn't 24 weeks yet, I thought that it also meant that they would let my babies die. Many hospitals won't resuscitate until 24 weeks and I was only 23 weeks and 5 days. I did manage to ask the triage doctor about this and she said that at my gestation, they would resuscitate if we decided to do so after a consult with the people from the NICU. Things started happening as soon as we were told the news. I received my first steroid shot while I was still in the triage room. They warned me that it would probably hurt a lot, but I don't remember really feeling it at all. Then they put an IV in place, I got a new hospital bracelet since I was admitted, and I was wheeled out of triage.
Saturday, May 11, 2013
Due Date: August 22, 2013
Baby is the size of: A Rutabaga! (Weight this time I think)
Emotions: All over the map. I don't think I could even explain the complicated mess that my emotions are right now. I am grateful to still be pregnant, angry that this happened to us, terrified that the babies will come too soon, hopeful that we will make it further, and sad that I am missing out on my pregnancy. Most of the time I try to focus on the hope and feeling grateful, but the negative emotions definitely show up from time to time.
Notable News or Events: Every single day feels like a notable event now. We made it to 25 weeks and that is worth celebrating!
The "weekly pictures" are a bit rough, but after missing 2 weeks of photos...it feels good to have some proof of this time. Apparently bed rest does not do great things for my hair...you've been warned!
Monday, May 6, 2013
Judging by the reactions of my family and friends when they heard that my "water broke," I would wager that very few people know anything about pPROM unless it has personally affected their lives. Preterm Premature Rupture Of Membranes (commonly referred to as pPROM) is a serious pregnancy complication that is the rupturing of the amniotic sac before 37 weeks and before contractions (or labor) begins. The most critical part of that definition in my case is the "before 37 weeks" part. Although, the before labor begins portion of the definition is the only reason why I am writing this post from an OB Special Care Room instead of a Labor and Delivery Recovery Room.
In most cases, labor will spontaneously begin within 72 hours after your "water breaks." However, in cases where the amniotic sac ruptures at a very early gestation (like me for example) the body sometimes resists going into labor. This small chance is what we are pinning all of our hopes on right now. You can do an internet search for pPROM and find women who lasted up to 10 weeks after "rupturing" before going into labor. Unfortunately, these miraculous cases are the exception. Even in an ideal situation, most women will either get an infection or go into labor within 2 weeks.
The list of risks and negative consequences of pPROM includes uterine infection, the baby catching an infection, placental abruption, a prolapsed umbilical cord, and either preterm delivery, stillbirth, or miscarriage depending on the gestational age and health of the baby. So, once things go bad after pPROM, it generally means the end of pregnancy since all of the complications will lead to an immediate delivery.
Why does pPROM happen? The most common reason is that an infection weakens the membrane causing it to rupture. I don't have any signs of infection though and my doctor thinks that there was a weak spot in the membrane that didn't develop right. Multiple pregnancies are sometimes cited as being at a higher risk for pPROM, but many, many singleton pregnancies are affected as well.
My doctors and nurses are constantly reminding me that there is nothing that I did to cause this to happen and it is something that I have to repeat to myself often. Chances are that I will never know what caused Baby A's amniotic sac to rupture and it is hard not knowing what went wrong. I'd been having an uncomplicated, easy twin pregnancy up until that point in time and I was always very careful about following "the rules" and not overdoing it. But...here we are.
**Update on our current condition**
Rather than publishing two separate posts in a day, I will just tack on a quick update for now. There has been no real change in our condition over the last several days. I am in the hospital on bed rest and antibiotics. All we can do is take this one day at a time. They are monitoring me and the babies for signs of infection and contractions. I am still leaking amniotic fluid once or twice a day which is the most unsettling thing, but they tell me that I should expect that to continue. Our hopes and prayers are that we will be luckier than most who suffer from pPROM and that we will be able to maintain the pregnancy for several weeks. Our big goal is to make it to 28 weeks, but that would be just over four weeks after rupturing which is a really long time. In reality, every single day matters and I try to focus on the little goals such as staying pregnant and healthy for today. This is our 6th day in the hospital and I am so grateful for each one of those days. While the odds are still against us...every single day that they can grow and mature inside me, increases their chance of survival substantially. I am torn between being hopeful and complete despair over the statistics. My babies are moving more than I've ever felt them move before. It's almost as if they are comforting me by reminding me that they are still in there and strong.
Friday, May 3, 2013
I am posting on my phone and it is an impossible post to have to make. Baby A's amniotic sac ruptured on Tuesday at 23 weeks and 5 days. So far I am not showing signs of infection or labor and am on hospital bed rest. However, the second that I start showing signs of infection or when my body goes into labor on its own, the boys will be born. The odds are not in our favor and there is nothing that I can do to change anything. I will try to post again sometime soon with more details...but for now I am asking for prayers for me and my babies. We are at a really high risk of infection and while the babies are technically viable right now, their odds of survival are around 50% and the odds of catastrophic disability for any surviving babies is terrifyingly high. Every single day matters so much right now. Please keep us in your thoughts and prayers.