Wednesday, August 31, 2005
22 Weeks 5 weeks, 1 day on complete bedrest since PROM
Wednesdays are always a big day, as it means I've made it another week, and one week closer to possibly having a positive outcome for at least one of our baby girls. Today is also our first Doctor visit since we've returned from Florida. AND it means that I get to actually get dressed and get out of the house for a change! What a treat. I felt more "mentally prepared" for this doctor visit than in the past, as I wasn't expecting any news of fluid re-accumulating because the leaking hadn't slowed down, so I wasn't going to be as disappointed by the sight of no fluid. We drove into San Francisco for this visit, as we were going to meet the Perinatologist that we've been speaking to on the phone. Once we got the hospital, Brian got me a wheel chair once again.At the ultrasound, we were pleased to see that both babies were growing on schedule for the Gestational Age (GA). Which means their growth was what it should be for 22 weeks for twins. Strangely enough the PROM baby was slightly more than 1 pound and the non PROM baby was slightly under 1 pound.
Hard to believe that they actually weigh a pound each. I’ve gained a bit over 15 pounds so far and that’s really hard to believe.
The printed ultrasound pictures we got this time weren’t very impressive. It’s so hard to see PROM baby’s picture without amniotic fluid.
Then the doctor came in. He again was so negative - it just drives me crazy. He listed all of our grim outcomes, that the chance of having healthy babies was slim and so on and so on. I know all of the outcomes. I’ve heard them many times already.
I finally told him that in that we had made the decision to ride out the pregnancy, cross our fingers that I don’t get an infection, that if he was going to be our doctor throughout this that we wanted his support as I needed to hear positive developments not just the negative.
I think he was sort of taken aback that I said that…oh well, I said what I felt and felt better for it.
Driving home, I was in a downer mood, Brian asked why, as the ultrasound showed the PROM baby growing, I said that I was again doubting our decision to continue, I was so scared of long term birth defects. It was a beautiful day in the city, and as we drove over the Golden Gate Bridge I started to cry. I was looking out at the ocean, and basically life going on all around me and I knew we were heading back home, to my bedroom and to being cut off from everything. This was NOT how I expected my pregnancy to be.
When we got home, my mother and brother had sent a beautiful bouquet of flowers that my mother said she was going to send every Wednesday, as it meant we had hit another week.
Monday, August 29, 2005
I’ve been watching CNN non-stop due to Hurricane Katrina. Oh my god. I can’t believe what’s happening. I have family who all live in New Orleans. My ex-husband is from there, and I have continued to remain very close to them over the years. In fact, Brian and I have stayed there on many occasions, going to Jazz Fest. The city is such a special place and my family there mean the world to me.
I was finally able to get some word from them that they had all made it out safely, but as the day unfolded and the levy broke, it was just a few blocks from where a lot of their houses were, right near Lake Pontchatrain. I can’t believe it. They’ve lost everything, their jobs, their houses. My ex-mother-in-law and husband were out of town before the Hurricane, so they didn’t have a chance to evacuate anything, including their 2 kitties.
I was able to speak to Leanne and Aunt Kimberly on the phone, and for the first time I understood what people have told me that they just didn’t know what to say to me and now I felt that same way when I spoke to Leanne and Kimberly. My heart just goes out to them and to everyone in New Orleans and the Gulf Coast.
Sunday, August 28, 2005
Our 1 Year Anniversary
Brian woke me up with a kiss, anniversary greetings and said he was going to the store, he returned bearing beautiful flowers to brighten my room. The remainder of the day time was about like other days, but when I changed rooms and went out onto the couch, Brian asked what I wanted for dinner, and surprised me with a gift bag of goodies, magazines, candy, and other good treats. Because the 1 year anniversary is “Paper”, he bought a whole bunch of lottery tickets and scratchers, unfortunately, I only one $1, but it was so thoughtful of him.
Best of all, he wrote the most amazing card to me. Wow, it just blew me away. It was 3 pages long and said how much he loved me, that he couldn’t’ wait for me to be the mother of his children and that he was amazed about how tough I was through this whole ordeal. He recounted so many of the great trips we’ve gone on together (which is funny, as I did the same thing in my card to him). I snuck off the bed when he was at the store to get a blank card from the office so at least I’d have something to give him for our day.
So hard to believe that 1 year ago we were in Lake Tahoe, celebrating our vows with family and friends. I certainly hadn’t expected this first year of marriage to be like this, nor had I imagined that I’d be stuck in bed to celebrate the day.
Thursday, August 25, 2005
Instead of writing multiple versions of this to everyone, I decided to write one long story (which I will eventually put up on my webpage http://www.alizard.com/ and I will in the future update the site every day or so as I now have nothing but time on my hands. I will also have Brian scan pictures of my more recent ultrasounds and take an updated picture of my belly to post. Currently I have belly pictures posted from right up until the problem occurred at almost 17 weeks. To see the pictures, click on the photos link from the home page.
A brief rundown of our TTC Journey (Trying To Conceive):
Surgery (Myomectomy) in 2/02 to remove 6 fibroids tumors (I found out I needed surgery the SAME day that I was laid off from my job at PeopleSoft in high-tech). A myo is like a c-section, but instead of delivering a baby, fibroids are removed. I was under a General and was in surgery for 3 hours and in the hospital for 4 days. The largest fibroid that was removed was 10 cm, or the size of a 10-12 week fetus.
I started seeing an acupuncturist, which has been shown to help
After no luck of TTC naturally, and many, many tests (nothing showed up as being wrong, it was probably just my age related) we started down the road of ART (Assisted Reproductive Technology).
We tried 4 rounds of IUI (Intrauterine Insemination, or Artificial Insemination) with no luck. The drugs I took for IUI were primarily oral with one injection each cycle. We paid for 50% of all of these procedures and drugs.
I had an outpatient endoscope surgery called a hysteroscopy done in the hospital to check for any internal abnormality after they were concerned about seeing a “dip” in my uterus. Everything came back normal. We were good to go to try the next step….IVF
IVF. (In-vitro fertilization) The big daddy of ART. Our insurance covered IVF one time only, 50%. Even at 50%, We were looking at out of pockets costs of $10K. (The drugs themselves cost $3K) I think we started the IVF process in May or June of 2005.
As we were into the cycle of daily injections, we were informed by our landlord of the house we were renting that he was selling our house, (AND not listing it through me – remember I’m a Realtor). He had given us no advance notice whatsoever, and that he wanted it to go on the market NEXT week. That was the week I was due to have surgery to have my eggs removed which required a few days of bedrest and then 4-5 days after that, any fertilized eggs were to be inserted back, which required more bedrest! Talk about stress. I was already on the hormone shots which made me emotional. I don’t think I’ve cried harder.
We got him to postpone the listing a week, everything went well for the surgery, 15 eggs were removed, 4 days later we found out only 5 of the 15 had fertilized and of those only 3 were viable. However, they were really good little embryos (One was the best quality possible, and the other 2 were the next step down, but still looked great). I have pictures of them on my website.
All 3 were implanted, and 2 weeks later (more shots the whole time) all 3 took!!!! I was finally pregnant, and with triplets!!!!
At week 8 of my pregnancy, while we were in Upstate New York for Brian’s sister’s wedding, I started bleeding and went to the ER. During the u/s one heartbeat looked very slow. After we were back home, another u/s showed that we lost one of the babies but the other 2 looked fine. I continued to bleed and discharge for another 3 weeks, then it stopped completely.
I started feeling really, really sick when the miscarriage started until the day I stopped the progesterone I was still having to take. I was only slightly nauseous, I just felt sick, sick, sick. Like the worse hang-over you can remember, but all the time. The day I stopped I started feeling great! Ok, maybe this pregnancy thing isn’t so bad after all.
As we didn’t know were we were going to live we started putting offers in on houses, and we finally got one (we were one of 7 offers on the house we bought, we had to go $100K over the asking price and we were not the highest offer either), but the sellers herd our TTC story and really wanted us to have the house. We were buying our first house!!
I was working a lot, getting ready for the move and felt great. I started taking pictures of my belly starting at 10 weeks. You can see the growth on my website, http://www.alizard.com/.
I was finally pregnant, healthy with twins, feeling great, just bought a house, things were fabulous.
The start of the bad news…
I had my amniocentesis at 16 weeks, 6 days (1 day short of 17 weeks on 7/26/05). The amnio is to check the babies’ amniotic fluid for genetic disorders. At the ultrasound (u/s) prior to the amnio, everything looked GREAT! The babies were moving around, looked healthy from what can be seen from the u/s, their development was right on schedule for both of them, AND we found out the sexes. We are having 2 little girls!
The doc said that if he could, he would try to do the amnio with one needle stick instead of two. What this means is that he inserts the needle into one sac, out through the membrane that separates the twins, and into the other sac to retrieve her fluid first. He then pulls the needle back and removes fluid from the other sac. I asked about this, stating I was concerned that putting 2 holes into one sac seemed worse that just sticking me 2 times. He and the nurse said he’d done many twin amnios this way and so I trusted him.
Well, that night, I started leaking amniotic fluid. Just a bit, which the doc had said could be a side effect. I went to sleep thinking about my two little girls and our move which was to take place in 2 days to our new house.
The next morning things got bad. I started leaking a lot, a whole lot. Basically my water broke. We called the doctor, they said to get in bed and stay there and for us to come in a few days to see how things looked. Watch for a fever or any cramping, and that was that. I got into bed, Brian started moving and packing all around me. I stayed put. The leaking did not stop. The doc said we could drive into SF for an ultrasound to check to see if it was amniotic fluid and to see how much I had lost. Brian asked what they would tell us at the visit if it was amniotic fluid (there was NO doubt in our mind that it was fluid), and they said they would tell me to go on bedrest to try to hope it would seal itself. We decided to not make the trip into the city and to wait till we could have another u/s in our area of Marin and instead take the time to try to heal.
My mom came up to help us with the move and take care of me. Brian came to the new house and set up a bed so that I could be immediately transferred from the bed at the old house to a bed in the new house. I entered into my first new house ever and went straight to the bedroom. That was my first glimpses of our house. I was very depressed. I once again stayed put. I continued to leak. Everyone helped with the unpacking, even my brother flew in from Seattle to help. To this day, I still have not set foot in the kitchen, nor do I know where anything is. If anyone asks me a question starting with “where is…” I tell them I can’t answer.
I can’t believe this is happening to me.
1 week past amnio & rupture (1 week on bedrest)
1 day shy of 18 weeks pregnant
We go to our first u/s since the amnio and it’s not good. There is a small amount of fluid near the baby’s head of Twin A. Very small amount. Her heart rate was still normal, and she had fluid in her bladder and abdomen, signs which were also good. I have a picture of this u/s that I will post. Twin B looks fine. At least that’s a relief. The Doctor (a different doc than the one who did the fateful amnio) said that the baby needs fluid for her lungs to develop normally. We are told to go back home for more bedrest and that hopefully in another week it will heal. I can’t even walk out of the office as I’m crying so hard.
At some point this week Brian’s mother flies out from Pennsylvania to help with me and help us unpack. I think she got in on Friday. Brian started calling in sick or getting friends to help cover his trades, so he could be home to take care of me. Bedrest means getting up only to use the bathroom. Even sitting up in bed is discouraged. I only sit up to eat. That’s it. Typing has been difficult with one hand lying on my side. I stopped emailing people, as it was too difficult logistically.
I am starting to loose it. I can’t believe I’m in this situation. I have two major thoughts, one is for the health of the babies obviously, and the other selfish I guess, but I have lost my freedom. I am normally so active and now I am stuck in bed, in my new house that I haven’t even seen. Brian has lost his freedom too. I can’t work. How am I going to cover the mortgage of the house we just bought? Being self-employed as a Realtor, if I don’t work, I don’t make money. We can’t make it on Brian’s salary as a firefighter alone.
We really started pressing the doctors to know what the outcome looked like if things didn’t heal. Finally one of the Perinatologists called us and was really very matter of fact with us. The outcome was not good. Birth defects for both babies were a very major concern.
The 3 options as were outlined to us were:
Abort (or kill, as the fetus would not leave my uterus, with a shot of chemicals to her heart) the ruptured twin.
Abort both twins.
Do nothing and see what happens.
The best outcome was for the sac to heal.
You might be saying, why would you abort both twins? Or even the one, as she seems to be growing ok? Well, this is a 2 for 1 deal. Although the twins are in two separate sacs (they are fraternal), they are both in my single uterus.
What I have is called pPROM. (or PROM for short)
--Information on pPROM (Preterm Premature Rupture of Membranes)
The single biggest fear from PROM is infection. Because the sac is ruptured, bacteria can easily find its way into the sac through the open membrane from the leaking fluid. Many, many cases of PROM pre-term labor are caused from infection. Pre-term labor would affect BOTH babies, no matter how healthy the one is currently. 24 Weeks is the earliest viability for pre-term babies, but the outlook is not good for that early delivery. One doctor told us there was only a 10% chance of not having problems at a 24 week delivery. At 28 weeks, things start looking better, but it would still be an uphill battle.
Many PROM women go into the hospital for the remainder of their pregnancy at 24 weeks, (as it’s the fetus’ earliest viability). The mother is given both antibiotics and steroids. The antibiotics are to try to ward off infection, and the steroids are to help speed development of the fetuses in case of a pre-term delivery.
The other factor affecting the PROM baby is lung development issues. Babies need amniotic fluid to develop their lungs, as they actually “breathe” in the amniotic fluid. The major time of lung development for a fetus is between the weeks of 18-22. I ruptured at 17 weeks and am currently at 21 weeks.
Another fear of PROM is compression of limbs and face. The fetus usually swims and moves around in the amniotic fluid, and with no fluid present, as they she will have very restricted space. Oftentimes, surgeries are needed not long after delivery to correct limb deformities.
There are many other complications like: prolapsed cords, placenta abruption that I won’t go into.
Here are some statistics about pPROM:
About 75% of all women with PROM will deliver within 1 week, and nearly all will deliver preterm.
1/3 to 1/2 of all prematurity is infection-related.
Major neonatal infections occur in about 5% of all cases of preterm PROM, and in 15 - 20% of those with chorioamnionitis.
Umbilical cord prolapse occurs more frequently in PROM with a reported incidence of 1.5%.
Overall rate of resealing is 14.3%
Only about 20% Proms will prolong pregnancy duration up to 1 month.
Chorioamnionitis affects up to 40% of women who develop PPROM before 27 weeks gestation.
What is chorioamnionitis?
Chorioamnionitis is an infection of the membranes (placental tissues) and amniotic fluid. It occurs in about 1 to 2 percent of all pregnancies, but is much more common in preterm births. Chorioamnionitis can cause bacteremia (blood infection) in the mother and may lead to preterm birth and serious infection in the newborn baby. Other terms for chorioamnionitis include intra-amniotic infection and amnionitis.
The organisms usually responsible for chorioamnionitis are those that are normally present in the vagina, including Escherichia coli (E. coli). Group B streptococcus may also cause the infection. Chorioamnionitis can develop when the membranes (amniotic sac) are ruptured (broken) for an extended period. This allows the vaginal organisms to move upward into the uterus.
What are we going to do?
Well, after doing a lot of research I found a 4th option I felt, a way for the sac to heal which would make everything ok. There is a Perinatologist, in Florida who specializes in fetal surgery (yes, that’s surgery in the uterus) and has shown some success (50%) in a procedure called an Amniopatch. In this procedure, blood platelets and the chrio portion of blood is injected into the ruptured sac. It is thought that the platelets go directly to the torn portion and start clotting as they would do as if you had a cut anywhere on your body.
There was probably little chance that our insurance was going to cover this procedure, as it was still considered experimental. It would end up costing around $10K. (wow, these babies have already cost us a lot of money and they haven’t even come into the world yet).
2 weeks since amnio & PROM
1 day short of 19 weeks pregnant
Our 2nd ultrasound after the PROM was even worst than the first. It showed no fluid what so ever around Twin A. All other signs were still ok.
The leaking that I’m experiencing is basically the baby’s urine. She gets the fluid and nutrients from my blood and umbilical cord, which she excretes. Normally this fluid is recirculated every few days, but with the sac being ruptured, it just spills out of me.
I don’t sleep much at night, because as soon as I feel it starting to leak I get up to go to the bathroom, as I got really tired of having everything be wet all the time. Easier to have it go in the toilet.
I came home and sobbed and sobbed.
We spoke long and hard about our decision, but we felt that the best option was for the sac to heal, so we decided to fly to Florida to try the Amniopatch. Obviously, after being on bedrest straight, it seemed counter-productive to fly across the country. But our Doc said that the bed rest is to try to get the sac to heal and to try to minimize leaking, and if we were going to try a procedure to get it to heal, he felt it was ok to make the trip.
Brian went to work today for the 2nd time since my PROM. His mom Markie was still in town helping me. Sadly, she threw her back out during the day sometime.
Brian came home from work with no sleep what-so-ever during his 24 hour shift. He had to go out on a call with a young crack-addicted woman who was pregnant. She had already had one baby which was taken away by child protective custody. He was so angry about the unfairness of it all.
Brian’s mom’s back was very bad. She could hardly walk. Brian dropped her off at the terminal first, and finally made her get in a wheel chair as she could hardly stand. He then came back to the car, we had an hour to kill before we needed to go to the airport for our flight. (Better for me to recline in the car than be upright in a wheelchair) He then dropped me off in a wheel chair while he went to park the car.
Our flight to Florida was terrible. It started out ok (I was enjoying my first time out of bed in almost 3 weeks) and Brian was whizzing me around in a wheelchair, getting through security faster, and enjoying the perks of pre-boarding. I was actually able to wear shoes and the maternity clothes I bought just before this nightmare happened. We had commandeered the front row of seat for ourselves, as I’m definitely finally looking pregnant, and I had my feet up on Brian’s lap trying to look forlorn.
But then, everything fell apart due to a crazy senior woman sitting directly behind me in the 2nd row of the plane (she was a wheelchair person too), and her little dog in a carry-on. The dog starting yapping and barking with the highest pitch bark I think I’ve heard after a flight-attendent told her to put the dog back in the case rather loose than on her lap. As it was right behind me, I had to try to plug my ears with my fingers. Needless to say the rest of the occupants and the flight crew were not all that happy about the noise and the thought of a flight to Vegas. After many warnings to her and the dog, they told her that she would have to get off the plane with the dog. Well, all hell broke loose. She kept waiving around a piece of paper from a doctor stating she had separation anxiety and could not be away from the dog and that the dog was allowed on the plane. She repeated over and over that she flew every month on Southwest and never had a problem. That as soon as the engines started the dog would stop barking. The flight crew wasn’t willing to take that chance, so they told her we would not be taking off without her and the yapper leaving the plane. She started crying and screaming and the dog was yapping……..
We thought that maybe we were being secretly filmed for the tv show “Airplane” that features Southwest Airlines. I actually found the whole thing quite comical.
At this point, we realized that we were going to be seriously delayed. At least we knew we had a long enough lay-over in Vegas so that we should probably make it, but there were many other passengers that weren’t so lucky. They even said over the loud-speaker, apologizing to everyone for making them miss their connections, but it was due to a difficult passenger that would not deplane. This just made her cry even more and yell that we just “did not understand her pain, her terrible anguish.” After threatening that they would get the police (they did) and that she would go to jail (she did not), after her swatting at the policeman, many more tears, she FINALLY got off the plane. Wow, what a start to our trip.
Well, we got to Vegas, having to land in a very difficult pattern due to the MAJOR lightening storms and rain taking place there. We could see some amazing, scary lightening as we were coming into Vegas. Scary indeed. After landing they said that the airport had been shut down due to these storms, and that currently no planes were taking off and we may not have a gate to go to. We finally got a gate, got into the terminal, and found out plane that was supposed to take us to Tampa hadn’t even left San Jose yet. Now, things were not looking good for getting much sleep. I had the pleasure of sitting in a wheelchair in the terminal for 2-3 hours or so, (I never knew how a wheelchair could make your butt hurt so much). After we left the gate, another storm came in and we now had to sit on the plane for another 2 hours, as the lightening wouldn’t even allow us to move the plane from where it was.
We finally left and made it into Tampa at 4 am or so. Got a taxi to our hotel, slept for maybe 2 hours as we had to be at the hospital at 7:30 am.
Monday, 8/15 Tampa, Florida
7:30 am We got the hospital, I again got to scoot around in a wheelchair. After signing our lives away in the billing department and giving them our credit card number (our insurance had denied the procedure), and guaranteed the $$9,000-$10,000 that this was going to cost us, I was sent to radiology and ultrasound.
At this u/s once again the ruptured Twin did not show any fluid had accumulated. But the u/s did show that both twins were growing at the same rate, and that the ruptured twin did show signs of fluid in her abdomen and bladder. We met Dr. Quintero for the first time after about an hour in the u/s room, as well as 2 other doctors. They were all excited for my case as this would be their first twin case that they hadn’t initiated (due to fetal, in utero surgery).
He once again spoke of our options: These are the same options we’ve now heard many times, for I thought it might be helpful for those to understand what we are faced with if the patch should not work:
Abort (or kill, as the fetus would not leave my uterus, with a shot of chemicals to her heart) the ruptured twin.
Abort both twins.
He also spoke of some complications from the procedure, basically stringy, thread-like things attaching themselves to the fetus, which would not allow her to move. He said this happened in 10% of the cases…… The other main concern is from transfusion issues, but I was going to use my own blood.
I decided to donate my own blood for the procedure, which would alleviate risks to me of blood transfusion issues. In order for me to donate my own blood, we had to try to find a ride to the blood bank, which was 20 minutes away from our hospital and hotel. We tried calling the hotel for the shuttle to take us, but the phones at the hotel were busy and we could not get through to the shuttle driver. Finally it was determined that the hotel had suffered a lightening strike which affected the phones. OK, is someone trying to tell us something? After waiting around for 45 minutes for a taxi, we went the 1 mile back to the hotel (gosh I wish I was healthy to make that short 1 mile walk). We decided to rent a car (unfortunately, no one rents a car for 2 hours) and so I went to give 1 pint of my blood. I was slightly anemic, so they warned me I might be tired (remember, I’d just slept 2 hours, what was tired anyway).
They whisked my blood away to be separated. The platelets and the chrio were needed.
Went back to the hotel, and SLEPT. Slept for hours and hours and hours. I had 8 voice mails when I woke up, thank goodness I put my cell phone on silent and that the phones in the hotel didn’t work.
Today is exactly 3 weeks from when I first ruptured
1 day short of 20 weeks pregnant
We got to the hospital at 10 am, I was admitted to Labor and Delivery. Mind you, I certainly wasn’t there to deliver anything, so seeing the baby warmer in my labor and delivery room was very difficult. A nurse administered an IV (which she wasn’t very good at), it made Brian cringe, as he knew he could certainly have done much better). She made my vein roll, and the IV hurt the entire time it was in. I’ve had plenty of IV’s recently, and NONE of them hurt like this after it was in. I received fluids and a dose of antibiotics.
We then waited around a long time (till the procedure time was to start at 1pm). I was prepped as if I was going into surgery. Lots and lots of precautions were taken to ward off any chance of infection. My abdomen was bright red from all the iodine.
The procedure started by using an u/s, just as in an amnio. But in this case the doc was trying to find ANY tiny pocket of fluid so that he could know what was in the sac and what was outside the sac (remember, the sac is invisible in the ultrasound). He inserted a needed through my abdomen (just like an amnio), but it hurt much more than an amnio. I was trying to stay so still, that I found it hard to breathe. Every time I took a breath you could see the fetus move in response to the up and down of my abdomen.
He fought and fought to find a tiny, tiny drop of fluid and extracted that so that it could be cultured to check for any signs of infection. The baby wasn’t cooperating, as she was moving around a lot. In that exact same place he now took the bag of my blood platelets and injected them into the sac. You could see the platelets fill the sac and it actually gave the baby a bit of room finally to move. He then injected the chrio, which the Doc described as the “glue.” After the procedure, one of his nurses when up to the Doc and told him that he continued to amaze her, that she couldn’t believe that he was able to get the stuff inside the sac and found that tiny drop of fluid. It made me feel like I was in good hands.
Remember, he never knew how big or where the whole in the sac was. The platelets act like any time you have a cut on your body, they move to the site, and start clotting.
He said that I may still continue to leak for 24 to 36 hours at the latest, as that leaking would be leaks that have been sitting in my uterus prior to the patch, but that I should see the leaking diminish as any pooled leaking escaped. But that generally, as of this very minute, if the hole was still small enough to heal the clotting was taking place immediately. I stayed in the hospital for 4 more hours, trying not to move. He suggested that instead of going home on Thursday as we had planned, that if we could stay till Monday when he could see us again would give me more time back on bedrest. We agreed, anything that could help we would do.
We went back to the hotel (once again the phone at the hotel were out from lightening) so we had to wait a long time for a taxi.
That night I leaked, and it was a different type of substance, sort of sticky. I figured this was the platelets and the chrio coming out, which I took as not a good sign, because if it clotted right away (which was what was supposed to happen) those things would be inside not leaking out. Throughout the next day, the leaking continued, back to normal amniotic fluid leaking. We starting getting very depressed at this time, as I don’t think my fluid pools much in my uterus, as when I leak it’s usually a bit at a time, then nothing for a while. This leaking seemed just like it did before.
By the evening of the 2nd day, when the doc said we really should stop leaking by then, we became very discouraged and depressed and saddened. We both agreed that we were still glad we made the trip and tried; and we both really liked Dr. Quintero. The money started becoming a big thought, it was like throwing $10K down the toilet (literally, as I leaked my little girl’s fluid down the toilet).
That night Brian had the worst nightmares, they made me cry. He was thrashing about and trying to cry out ‘help” in his sleep. This was so hard on both of us.
We called the doc on Thursday, and said things were not looking good, and maybe we should just go home (by this point, we were starting to go crazy in the tiny crappy motel room). He really felt we should still stay until Monday but that he was definitely leaning towards thinking that the hole had gotten bigger than a needle stick, and that it would never heal. I guess I wasn’t surprised by this fact, as I’d had no reaccumulation of fluid whatsoever in 3 weeks. OK, we’ve come this far to try this procedure, what’s a few more days.
The leaking never stopped, never slowed the whole time. By Sat and Sun, I was going absolutely bonkers. I couldn’t stop crying, I couldn’t sleep I was so miserable being cooped up in the room. I was only able to fall asleep at 4 or 5 in the morning. Our alarm clock was possessed, it kept going off even though it was on the “off” position. When we finally could sleep in the morning, it would go off almost every day, and would go into a snooze function. We finally unplugged the thing. Brian was going crazy too by this point, as it was 100 degrees outside with full humidity, Brian said even the tiny pool was like bathwater. There was NOTHING to do. We were so tired of the tv stations, we played cards and crossword puzzles, ate the food from the greasy spoon nearby. It was awful.
Today we get to go home!!!!!
We went to the hospital at our scheduled time 8:00 am (we were there 10 minutes early). Only to find out after 40 minutes that the u/s tech hadn’t showed up yet and they hadn’t heard from her. We were trying to catch a 12:00 flight.
Finally, she showed up, I guess she had gotten in a minor car accident and gotten a speeding ticket. (not good omens for us for sure).
The ultrasound once again showed no fluid reaccumulation (no surprise to us by this point), we were certainly questioning our staying the extra days. The doc came in and looked and looked at the ultrasound. After a while, he said he saw something a bit different.
Let me back up a bit here and explain something. The docs decide which twin is A and B by their proximity to my cervix. The baby closest to the cervix is always considered Twin A. I think my case was never clear cut as to which baby was A or B, as the twins are side-by-side in my uterus as opposed to one on top of each other. I can clearly feel the two fetuses. At one earlier u/s, the tech even called them the other way around, I told that that she was mistaken, and that the one of the left, was Twin A and was the ruptured twin. She said they were very similar in their closeness to my cervix.
It has been shown to be worse when Twin A ruptures, as by being closer to the outside world and the leaking, it is closer to infection. Oftentimes, a ruptured twins umbilical cord or body parts (arms, foot, etc.) can start falling out the cervix as it starts to dilate.
What he said he saw was that Twin B (not ruptured twin) seemed to be taking up more space (as you would think she would as she has amniotic fluid) and seemed to be going more downward, towards my cervix. He said it was too soon to tell, BUT, if this happened, it could mean a bit of positive news for us. What could happen is that she might help her sister (he put it exactly this way). She may block my cervix, which would block the leaking (which is the pathway to infection) and chances for her coming out early of the cervix. This doesn’t mean that her sac was going to heal, and that sadly the hole must have gotten too big for the Amniopatch to work. If fluid didn’t leak out it would still be in my cavity around her sac.
We talked to Dr. Quintero that we had made our decision to do nothing. We were not going to abort either twin and we were going to take our chances. We asked about timing of my going into the hospital. He said it was up to us and that he suggested we speak to a neonatologist (a preemie baby doc) to get statistics on outcomes for # of weeks at delivery. Although babies born at 24 works (when most PROM moms are admitted) have been shown to be viable, chances of not having any defects at this GA (gestational age) are slim. He said we should be able to dictate to our doctors about when we want to go in. We are leaning more towards weeks 28-30, sometime in that range.
We had an uneventful trip home, thank goodness, and were SOOOOO glad to be home. I felt a bit of “happiness” for the first time, just at being home! Our dog was so happy to see us too.
4 weeks since PROM
One full month on bedrest
Brian had to go to work the day after we got home. My dad flew up from LA to help, as we didn’t get have reinforcements to help me while on bedrest. He came up for the night and plans to leave n the 24th.
21 weeks pregnant today
Both Brian and I feel a cold coming on. I’m sure we got it from the nasty air flying home. This sucks. I am not supposed to get sick. Hopefully, hopefully I won’t get a fever and it will just be a cold.
Thurs 8/25 and my 39th birthday……
Ok, in general this day really, really sucked. I turned 39 today. This is certainly not haw I planned to spend my birthday. After being on bedrest for over 4 weeks, I was looking forward to this day. I was hoping for something out of the ordinary, not just another day of lying in bed.
How can I possibly be 39? 29 is really more how I feel (and look most people say). At least I was finally able to get pregnant, but this certainly wasn’t how I had planned things. My closest friend Keri came to visit from Santa Rosa. She surprised me, I was in the shower (always a big day when take a shower) I heard the phone and my cell phone ringing over and over, but hey, I was in the shower – my one pleasure every other day. When I finally got back in bed to check my messages, I realized she had been outside my house to surprise me for my birthday. (Brian had gone to the store). She was super sweet and brought me lunch and some fancy desserts with candles. Thank goodness she hadn’t gone too far away.
The rest of the day was pretty much like any other day. Any other day of lying in bed. I don’t know, I expected flowers, fireworks, treats, I don’t know…something!!!! Instead I cried most of the day feeling sorry for myself.
This morning when I rushed to get out of bed due to leaking of course, Brian said he wished he could patch me like a bike tube. I thought it was funny. We both have colds.
Our 1 year wedding anniversary is tomorrow. What a year. I can’t believe one year ago we were in Lake Tahoe getting married on the beach. I hope that tomorrow will be something out of the ordinary.
I have such conflicting emotions. I am SOOOO tired of the bedrest, but at this point, as we have decided to go with option 3, Do Nothing, we want the bedrest to last as long as possible for the health of the girls. But it sure is hard on me mentally.
Many PROM moms name their babies at this point. Brian and I had never intended to name the girls until they were born (even though we are certainly thinking of names), now it’s even harder as I feel I need to have some detachment from them other wise it is so hard emotionally. Then again, I need to continue to love them and encourage them to make it into this world so that we can love them with all our might.
Well, that’s our story as of today. As I mentioned, I am planning on putting this story up on my website in the next few days, and I will continue to update happenings as they develop on my website. So check back often. http://www.alizard.com/