March 14, 2007 was our anniversary. It was also the day I went in for my first visit with my third pregnancy. I was 11 weeks and had been looking for an OB. Since Rich had been working at the Daily Herald we have had BCBS insurance and Dr Jones can’t deliver Blue Cross. I was not happy about this and was having a hard time finding a replacement that I liked.
I found Dr Berry and was set up to visit him to hear the heartbeat. That morning Manda had come over to visit and had walked to the park with us. We walked to the doctor’s office and had about an hour wait. Both Grace and Kate did fine in the waiting room but when Dr Berry did finally get to us he was very sorry about the wait and offered to do an ultrasound in lieu of just listening to the heartbeat. I was excited to have that option and he proceeded to look for the baby. He watched the monitor as he went once across and back, then with a concerned look he looked a little slower. I had been telling him how with Kate’s pregnancy I was under a lot of stress but I felt like this time I would do fine, just informing him of part pregnancy experiences. He about snickered and said there are two.
So much for calmness! I asked what he meant, How sure he was, If he was positive. He then showed me two heart beats, two bodies, two heads and reassured me that they were in different positions so he was positive that there were two babies. I told him that there was no history of twins and he said “That’s the beauty of it, there does not need to be.” Grace and Kate could sense I was stressed and became anxious too. I held Kate and told Gracie there were “two babies in my tummy”. Grace thought it was funny and Dr Berry went to get me some water. Thankfully we walked, as my doctor said not to drive for a while. He also said to come back if I needed. I went back the next day with the camera and got a little video of my two babies.
April 11, 2007 is Grandma Brossettes birthday and was also my second doctor visit. (Many of my appointments are scheduled on birthdays and anniversaries, nothing I planned, just luck or an easier way to remember them.) We had planned to find out the genders and find out all kinds of details and when I got there we didn’t see anything. I had had my hopes up so it made me even grumpier to not find out anything. We did get another ultrasound and daddy saw both babies. There was one point where we saw both babies facing each other almost looking like they were snuggling, so sweet. So now, we have planned for the 25th an appointment with Maternal Fetal medicine at Timpanogos in which we will find out what we are having.
April 25, 2007 was not what we planned at all. We went to the hospital to see the Maternal Fetal doctor. This was a routine precaution because I was carrying twins. After registration and our wait we went and started our ultrasound. The tech did routine things, like measuring and finding bones and organs of what was then Baby A. She moved on to Baby B and showed more concern and had the Perinatologist come to do the remainder. She asked Rich to turn off the camera and from any experience I have had that is bad. She worked intently and told us we were carrying identical twin boys with twin-to-twin transfusion. Friends of our had lost a baby to this and upon finding out that we were pregnant, Rich had learned more about what this was. All I could think was that they lost their baby.
The Perinatologist told us of the fetal surgeon, Dr. Ball, who we had an appointment with on Thursday. Dr. Ball was amazing. He went through everything methodically and found out exactly what we were up against. Our boys, Miles William and James Winston are not in the best situation. Ten to fifteen percent of identical pregnancies have twin-to-twin, and ours is accompanied by a placenta that is closest to my tummys surface. This puts it in the worst place for surgery. Surgery will consist of inserting a needle the size of a spaghetti noodle with a camera and a laser to fuse arteries and veins that the two are sharing. Right now Miles is 9oz and James is 7oz. If this surgery is completely successful they would both have a higher survival rate. Right now Dr Ball is not as optimistic about James’s ability to survive. The boys also struggle with the fact that their umbilical cords are not coming from the center of the placenta. Both umbilical cords are *venil* attached, which means they are coming off the sides. This presents another problem in that we can’t see where James’s cord is through ultrasound. If surgery were to interfere with the umbilical cord he would have even more limited chances of survival. It seemed like anything that could have been our hope was eliminated. James’s position is also not great for surgery.
He is close to the placenta and again through ultrasound it is hard to see what Dr Ball needs to do. Since James lacks amniotic fluid to move around this is why we did not have surgery on Thursday. He lacks fluid because he is not getting the nutrition to produce urine, and also therefore does not have a visible bladder. Dr Ball is hoping that he moves and creates a place to insert the needle. James also has fluid in his brain, which signifies there is a high probability that there is already a degree of developmental delay.Although we are faced with all these grim pieces we have hope and faith that we will have Miles and James here healthy. We went to the temple Friday night and both felt comfort. I am not sure that this comfort that ‘things will be ok’ means things will happen as I want or that I know my family is eternal and I will have my boys regardless of if it is through their earthly experience. I was hesitant up until attending the temple to ask that Heavenly Fathers will be done and that I might understand that will and have an idea of what that will is. I think we have been on our knees, or in a form of prayer since this started to unfold. I think Rich and I are feeling a comfort that we will have our boys. I don’t know if we just want it so bad that we are convincing ourselves that our wants are the will of the Lord, or if His will is that we will have them on earth.
I know I have come to the realization that turning it over and asking His will is not automatically accepting the worst fate. I know that is what I was initially afraid of and was hesitant to listen while praying. I know Heavenly Father wants us to be happy. I know that if it is in our and our children’s best interest for them to join us, then that’s what will happen. I know it is a trial of our faith and that is what our Heavenly Father is interested in… not the amount of heartache, not the hours spent searching or praying for answers… but the growth Rich and I (and whomever else is supposed to grow from this) receive. I know we can be the recipients of a miracle and I will hold on to that. (April 29, 2007)
We had a good appointment Monday. Good is now defined as the same or not worse. Things that are good are that James is moving. Last appointment he was ‘stuck’ because he had not space to move. This week the tech measured a 3cm pocket of fluid and the dr measured a 1cm, either way he had enough to be kicking. His bladder was also visible and has a heart rate of 136 (over 120 is normal). The doctor also saw that his cord was attached well to the side of the placenta versus velamentously attached. He also has a good diastolic flow (resting heart rate) in his umbilical cord, and for being the smaller of the two, is great. Miles had 9.5cm of fluid and is still healthy.
The doctor warned us that we will have good and bad appointments and to keep the long term in view. He also reminded us that having Dr Ball as our doctor was positive. I need to continue to take it easy to avoid contractions. At this point contraction could tell my body to labor and we need them to stay in as long as possible. They are still holding off on surgery due to James’s position and location. The scary part of this appointment was that he had us prepare an emergency plan…what to do prior to 23wks, after 23wks, and if labor was acute. (4/30/07)
We met with doctor Belfort today. He was one on the doctors that attended the conference and seemed to be excited about our progress. If we do have the surgery he and Dr Ball do it together. Today Miles has 11.5cm of fluid (and a heart rate of 156)and James has 3cm (and a heart rate of 146) . Dr Belfort did say he saw a 2.5x4 pocket on James. Both have good blood flow and on a test done called a MCA they both had a good flow. The MCA tests if there is too much blood flowing to the brain. If the babies were to be in trouble the body automatically attempts to save the brain by sending an abundance of blood. Like I said though, this test came back in a normal range, even with two active babies (TWO!). We talked a lot today with the nurse about delivery. I am still scared to death and actually happy that I have space to fear delivery versus overwhelmed with a fear of my babies survival. Granted we are not safe now, I think we are in a better situation that we were just a week ago. We are also not in a situation to need the surgery. With both babies having bladders, Miles not having too much fluid, and there not being any reverse flow on the Doppler, plus other technical difficulties, but still love that we have so much positive happening that there is not a need yet.
The doctor also talked to Rich about us not being in a classic phase of TTTS. We started in stage 2 (Stage II: polyhydramnios in the recipient, a stuck donor, urine not visible within the donor's bladder) last Wednesday , were in stage 1 (Stage I: polyhydramnios in the recipient, severe oligohydramnios in donor but urine visible within the bladder in the donor) at our last visit, and today we are in a stage that is less than stage 1, primarily because of a growth discordance. We have two growing babies and have some but not all the characteristics that define TTTS. (5/3/07)
"Near delirious" is how Dr Ball described how he felt about how much better things are looking. Barbara Lewis (MIL) went with me to my appointment this time. Miles and James were both doing well, had good blood flow in their umbilicals, heart rates were 144 and 160 and fluid pockets were 8.9cm and 4cm, and both had and emptied their bladders. He also found multiple pockets on James. James has also moved enough out of the way that if we needed to go to surgery it would be safe to do so. He was surprised, 'almost ridiculous',how much James has lost on his brain. Dr Ball says we have 5 r 6 weeks of laser potential, after that he wold not do th surgery. He said there may be an increased probability to do an amnioreduction, but that is currently not an issue as we have had three weeks of increased fluid. Dr Ball also told us that the umbilical attachments were on my left and near my cervix (both ok locations, just needed to know in case of surgery) Dr Ball also looked for a while for connections in the placenta, something he does quietly. He said things were behaving as an artery to artery connection but he could not find it on the ultrasound. He said "Bottom line, be happy where you are".(5/7/06)
Today was another good appointment.We have a 15oz Miles and a 10 oz James. While the tech was measuring things James emptied and filled his bladder. Who knew my little boys peeing would ever make me so happy. Miles has 10cm and James has 3.8cm of fluid, which the excel-zealot in my is scratching to make a graph showing the growth and comparing the percentage in the difference of the two, but I digress. Both ductus venosus looks good (Blood shunt between the left umbilical vein and the right sinus venosus of the heart in an embryo.) James's fluid on his braid has also provoked another adjective...it was 'verging on the ridiculous' on the decrease of James's fluid, meaning there was some but no where near what there was on our first visit two weeks ago.
Since James has been making slow but steady improvements, Dr Ball is now switching his highest concern to Miles and his heart. This is common in the 'donor baby'. His fear is that in looking at the two hearts James has a good 'squeeze' while Miles has a bit more fluid movement. To visualize it James has locomotive chain reaction with a good down beat while Miles has slightly less of a strong downbeat, more fluid movement, but still a healthy heart. He said if we needed something to worry, this is what he is watching the closest. Dr Ball said this could be caused by blood vessels constricting and the heart having to push large amounts of blood through a small vein. He said the was a 'could be' because so little is know what all is going on with the placenta in twin to twin transfusion syndrome.
We still have about five weeks to be out of the possibility of having the laser surgery, he and Dr Belfort mapped out my belly on where they thought the bet points to go in were. It was interesting to see them constructively disagree and convince each other of locations, angles, where the equator of my placenta was. He said the larger my stomach got the easier it would be to get in, so over the next month plus we will see if the benefits of surgery outweigh the risks of surgery. (5/11/07)
So much for our good streak of appointments. Today was a bad appointment and when I graphed out the numbers I had over the weekend, I noticed the lines were not coming together, so I sensed a bad appointment coming but not this soon. I will go in for surgery this thursday, with Dr Ball, Belfort, and Walker. Keri went over all the details as to what to expect and hopefully to easy my nervousness. Miles has a heart rate of 156 and 12.8cm of fluid. James has a heart rate of 138 and 3.2cm of fluid. He is growing but his fluid is not. They both have a strong heart and cord flow but we are going to have the surgery now before James is in a position to be weak on top of surgery. I assume I will have tons more to write Thursday, so this one will be short. (5/14/07)
I have had an appointment everyday this week and James's bag is smaller each time and Miles's heart is showing signs of working too hard. The timing could not be more accurate for surgery. Had we tried three weeks ago, Dr Ball would not have had enough room, now we have two more drs and height gained from my growing belly, plus with James gaining and growing he has moved to a better spot. (5/16/07)
Today we went to the hospital at 10am and were checked in to labor and delivery, did all the tests, pee, blood, heart, pre surgery stuff. Dr Walker flew in at 1:30 and we went up to maternal fetal medicine to map out what they were going to do. I currently have a D*(donor umbilical attachment), R* (recipient attachment) and a X (entry point for the laser) on my tummy in sharpie. Once all three doctors were there looking and mapping they saw that my placenta had either thinned or grew to cover their access point. Since Dr Walker has a more recent/higher quantity record they somewhat took his lead. His opinion was that since James had a bladder and Miles was not in imminent danger of worsening heart problems that he would rather wait a week to three weeks and see what things look like. They all feared getting in there and risking not being able to get all the connections separated. Due to the entry location they would be, as Dr Ball compared it, trying to reach above and behind with a roller paint brush to finish a corner. If there were to be anything right out of sight that they missed it could make the whole surgery useless and the risk to me, the boys, the pregnancy, etc outweigh having gone in.
So full of stress, tension, anxiety we were sent back to labor and delivery and discharged. I am beyond exhausted emotionally and physically and have yet to find a way to release it all while resting, and too anxious up to sleep it off. We may be looking at a trip to Washington to see Dr Walker at his office when the 'stars' align again. The silver lining is that we have friends within minutes of his office and family that has offered to get us there. I know we are blessed in this pregnancy. I just hope we can have the outcome that we are all working for.(5/17/07)
I know I said no bad news is good news, but staying the same or following the path that Dr Ball thought would lead me to surgery is still not good. Miles and James are in a similar situation that they were in on Thursday. James has a little less fluid but has a bladder. From what I understand, the problem lies in not having a (functioning) bladder, so the fact that his pocket is smaller is a result of him using everything he pees versus building a pool of amniotic fluid. Miles still has a little slower heart than Dr Ball wants. He referred to them as having symptoms of stage 1 (James's bladder) and stage 3(Miles's heart).
I got a phone call from Dr Ball Tuesday morning saying he wants to move my appointment to Wednesday so that I can fly out most likely for surgery on Friday or Monday. What a roller coaster! (5/20/07)
We are going to Seattle. Miles has a 12.5 cm pocket, 20 oz, measuring 22.2 weeks. His heart working a little harder but not bad yet but has some reverse flow which means he is on his way to it being critical. James is 15 oz, measuring 21 wks still has bladder, but is stuck (meaning no measurable pocket). There is a 21% difference in size. We are headed out Thursday for surgery Friday morning in Seattle w/ Dr Walker and will return on Sunday. (5/23/07)
RICH'S VERSION (Libby's addition in parentheses and at the end following the "~")
We got into town Thursday night, it was a long 1:45 flight with Libby having a few contractions. Arrived at the hospital at 7 am and had everything checked out for surgery. We were very optimistic about it happening this time, although Lib still was a bit nervous. As they started looking at the situation we found that the boys were still in pretty good condition with some concerns (Miles having reverse flow and James still stuck) but relatively stable. What we hadn't realized over the past few days is that Libby's increased discomfort was caused by a rapid increase in amniotic fluid. This can be dangerous if not checked. Little Miles had created a big swimming pool (his deepest vertical pocket was 16cm, 10cm warrants an amnio reduction) for himself and that had put a lot of pressure on the cervix. So they plotted how to do the laser but at the same time they looked at the cervix. After examination they found that it had a slight gap (it was 1/2inch and ready to deliver within days, and that my back pain the past few days was labor) and needed to be stitched up before they could do the laser. (At noon I went under general anesthic and had emergent cervical cerclage, which now reading about I had a 50% chance of giving birth or 100% chance without.) Bottom line things needed to move pretty quick other wise we could lose our babies(With both surgeries we were up against a loss but with out surgery, an even greater one).
Libby's additions~They are healthy enought to keep going and make it; but to deliver at 21w4d they would not survive. It was scary. One point I thought I felt water breaking. I have never been more helpless and afraid of losing them. Rich grabbed a nurse in the hall, Judy, and she eased my fears and calmed me down. She also gave me a St Jude, now I need to fin out what he is all about. Through that whole process I kept feeling "This is not right, I don't lose them. Someone stop this from happening." I think I have felt some assurance that we will raise them here. I have really tried to listen to promptings and not fight against any personal revelation and feel like this road will be hard and scary but to hold on to the end. The tests of faith in that are very hard, and I know I doubt (swaying between wanting it so much and what I feel is divine) ...Rich and I made light of it later watching Big Fish "this is not how I go"... except I did not "see it in the eye"...We have to make light of some of this stuff or else the grim statistics are depressing.
Our doctor did an emergency amniotic fluid reduction and got her into surgery to take care of things. So we have that concern somewhat contained but they are going to keep a close eye on her over the weekend (how lucky for us that this is a 3 day weekend). On Tuesday we will reevaluate the situation and see if laser can be done. Our best case scenario would be actually a healing of the ttts, but that is best case. Reality is that we will probably need the laser surgery, probably Tuesday or Wednesday and then fly back to SLC when we have been the hospital for another 24 hrs after that surgery.
So this is a fun trip to Seattle that will be spent in a hospital for like a week. How exciting. Four days in and out has turned onto at the least 6 to 7.(5/25/07)
James seems to be swimming away from the nurses when they look for a heartbeat, we'll know tomorrow after an ultrasound if this is because he has amniotic fluid.I hope he just needed a release in pressure. Heart rates are good, I'm fine, Rich is watching basketball.(5/26/07)
I feel like you can literally pick a number of random TTTS characteristics and shake them up and pick some. We had an ultrasound this morning and James does not have a bladder, but his heart, cord, and growth are normal. He still does not have a measurable pocket (oligohydramnios). Miles's pocket is a bit bigger at 11.2, so heading towards polyhydraminosis but not yet there, but us over all healthy. We are in a stage 2 of TTTS which justifies the laser surgery but due to the boys health not being in jeopardy it outweighs the risk of going in, so no laser surgery again. My placenta is still not anything I hold dear or appreciate but it is our best (of the worst) option. It is now in the way enough to not justify the risks, make sense? The risk of miscarriage by going through my placenta or hitting my blood vessels is too high to force us to go in without the boys condition being worse. We changed our flight to tonight, so should be in SLC by midnight. (5/29/07)
We're back in stage 3 (A small amount of amniotic fluid (oligohydramnios) is found around the donor twin and a large amount of amniotic fluid (polyhydramnios) is found around the recipient twin, the ultrasound is not able to identify the bladder in the donor twin, there is abnormal blood flow in the umbilical cords of the twins. Laser photocoagulation is recommended in this situation) My placenta placement is still the only reason we have not had laser. Miles has reverse flow.Miles is 1lb 10oz and has a deepest pocket of 11.4 and James is 1lb 2oz with a deepest pocket of 1.1 and my cervix has opened to the point of the stitch but it is holding.I was monitored for contractions and was having them 1 to 1.5 minutes apart. I was not feeling them because of the excess pressure already making up for the ability notice a firming and relaxing. I am now on nifedipine to stop those. At this point if either one develops hydrops or my placenta moves, which either is a possibility, it will outweigh the risk to the pregnancy and be worth chancing it. These guys have fought against worse odds to survive, plus it is not like I have a choice. (6/1/07)
We had an appointment with Belfort today. During ultrasound James surprisingly had a pocket of 4cm, his biggest yet. He has also regained a visible bladder. Miles had a pocket if 12 which means we had another amnio reduction. This one went in right under my ribs, where I had already been having pain. I think I irritated Dr Belfort, he has been trying to have me be calmer and it is taking some time. I opened my eyes and saw the needle and instinctually started to reach, he said "I can't have you touch my arm" which I knew and was not going to but I flinched so he left the room. I regained myself and we tried again. I don't think he used anesthetic as Walker did so I felt more and it hurt. When he put the needle in I don't think it went all the way through to Miles's pocket so he pushed again. I felt that and mentally could not believe I could do it. My mom was there holding ice on my head and my hands above my head. From my now two experiences, this is the best way for me to position myself. I felt every move he made with the needle, I don't know if it is because he is less gentle than Walker or that I was doing it anesthetic free. Miles was trying to get near the needle so he was maneuvering to collect fluid but not touch Miles. Either was he was planning on getting 1.5 ltrs and got about .75 ltrs. My uterus was contracting hard and eventually contracted covering the tip of the needles. Since there is a miscarriage chance every time they insert a needle, he stopped at about half of what he wanted. I then went to do 30 minutes of a non stress test and was having contractions 1-2 minutes apart with some gaps. He sent me home to rest and continue my prescriptions. I napped and several friends came over to visit, with icees, dinner, and a haircut and scalp massage. I think all the friends after my nap helped me not wallow in my sore tummy. One more week to viability! (6/5/07)
We are still moving in a non-negitive direction, somewhat. At our appointment today Ball did not find a measurable amniotic pocket on James and doubted the 4cm one found last time was all James. Those faint lines are hard to discern when they are wrapping and he thinks we saw a part of Miles's and then James's wrapped back on itself (think 2-ply of saran wrap). Miles had a 13cm pocket today, justifying amnio reduction but Dr Ball wants to wait until pain or cervix changes push us to do it. I like that attitude, I don't want to add a bunch of 1% miscarriage percentages to our odds. He also expressed some disagreement in where Belfort did the last amnio. He said below my ribs is not a great place due to contractions and wondered why we did not use anesthetic, but it sounds like Belfort will do the next one, so hopefully they have a talk about that. I think Ball is more experienced and I would prefer him to do it but if Belfort can be up to speed by Monday I guess that is our option. Everything else looked good. Hearts, cord flows, MCAs, bladders, and all the other vital things looked good so back to the couch and refill the Nifedipine. (6/8/07)
We came in for am amnio reduction appointment Monday. Monday is also a benchmark day because we reached viability. Not that we want to deliver at24wks but tubes are small enough to care for my babies. The reduction went much better than the last, Dr Belfort did this one but we now had all the right equipment, non-collapsing tube, connectors that fit, terbutaline, and anesthetic (3 needles thus far). Not to say that it was pleasant, but it was doable. He got 2 ltrs (which was the plan) and my body feels much better. I went to the non stress test side and was being monitored for contractions and uterine irritability. Contractions grew stronger and more consistent so I was transferred to Labor and Delivery Triage. Here I was monitored for a few hours and was given my first of two steroid shots to develop the boys lungs and another terbutaline (5 and counting) and starting my no food no drink period. Since meds were not stopping the contractions I was transferred to Room 6 in Labor and Delivery for monitoring, here I was upgraded to clear liquids, like apple juice, chicken broth, water…all very filling for having a banana and a piece of toast for the day
Dr Belfort came to check on me and my contractions had subsided to Braxton Hicks type contractions. He wanted to do one more cervical and amniotic fluid check before I left. Sadly I did not get time to shower, just enough time to get my second shot (13 total, I think) to help the boys lung development. Once up to MFM Jenielle checked everything and saw that my cervix was still at a 2.5 (as it was on Monday). She also saw several pockets on James. Dr Belfort measured a 3x5 by 3x5 pocket and an 8cm deepest vertical pocket. This is the best size yet and we think due to the amnio reduction. Miles was at a 9cm, which is great for post reduction. Everyone seemed very happy for all the fluid changes, even the front desk ladies. I am checked out and ready to go home and back to the sofa. Dr Belfort also mentioned he and Dr Ball delivering the boys c-section at 32-34 weeks (that’s only 8 wks!). I will go again Friday and hope to continue to be on the upswing of this roller coaster. (6/12/07)
I really don't know how to feel about this appointment. I am overjoyed that my boys are healthy. James is measuring on date and Miles four days ahead of my due date, so 1lb 8oz and 1lb 15oz. What scares me is the reason James has fluid is that during my last amnio reduction Dr Belfort believes James kicked the sac and pierced his with the needle that was draining his brother. This allows amniotic fluid to get to James, which will help his lung tremendously but there are big risks with that accidental procedure, called a septostomy. Right now it is great, James has a DVP of 5cm (Miles is at 11). The risk is that that hole expands and cords tangle, terminating both lives. I've researched trying to find information about it but have yet to find anything that feels the benefits are worth the risks. I've been trying to figure my feelings on this...
I think the answer has been sitting in my email for a few days now... "The same power that can change the course of rivers and move mountains certainly could move a placenta (or in my current situation, not have a little leg kick an extra hole).......if it was part of the plan. Obviously, it was not, and keeping it in its present position was a polite way of eliminating human (doctor) interference that could have brought about results other than what Heavenly Father wanted. Heavenly Father has a plan and is working that plan. Allowing us to exercise faith helps us be more alert to recognize the answers and blessings that always come. We need to just sit back ( in your case, lay back ) and watch." It was His will. Regardless of what educated doctors, reports, and medical journals say Heavenly Father's will will happen. I am trying to hope for the best and hope that I am part of the percentage that do not have their septostomy tear, but my job is to do the best with what I have. (6/15/07)
Today was mostly good. The boys are healthy and were too active to get all their measurements. Miles had a pocket of 14cm, James had 4cm. I asked Dr Ball about the accidental septostomy and he said with it being unintentional it is most likely just a pinprick. Plus since James has more but not an even amount to Mliles he believes it does not have a strong chance of tearing. He looked over the bags and said they both look fine but we will most likely not do anymore amnio reductions due to it triggering labor, meaning embrace the oxycontin and see how far (and how big) I can stay pregnant. The bad news is that my cervix is shortening under the pressure, it's at 1.2cm. This combined with polyhydramnios in Miles will most likely trigger my labor prematurely. Dr Ball feels if that is at 28wks (3wks!!), we are in a position to deliver we will or go onto hospital bed rest. (6/18/07)
Yay another good appointment. The boys were wild the whole time, so much so that Dr Ball checked hearts, chased babies for a while, and then said they are fine. They were literally twirling and bouncing off my insides. My resting is making a difference. I was suprised to hear that my cervix was at 2cm. These things don't grow back, but with the relieving pressure it was more stable. Dr Ball thinks we have 3-5 weeks to go. What happened to just passing half way, viability,etc. I personally am not ready for a c-section. I've been worried the whole time about them, now they are going to slice me! (6/20/07)
Ya start to get confident that things are going good and then another bad appointment. We got measurements today, Miles is 2lb 15oz and James is 1lb 10oz. James is measuring on my due date and Miles is ahead. This is a sliver lining, at least we are not behind my due date. They both have fluid. Miles's deepest pocket is 16.9cm (amnio worthy) and James's is 8cm (thanks to a septostomy). Dr Belfort was ready to do another amnio reduction. He had the bottles and needles ready to go. I was very hesitant because we have had to stop labor each time and I am afraid that with the septostomy that we would have a complication in my membranes rupturing and have to deliver (James is too small for me to take that risk). He called Dr Walker and decided that if I could endure the pain to wait until thursday. Dr Belfort's hesitancy in sending me home was that my cervix is ready to deliver (.7cm) added to the combined fluid between the boys, there is enough fluid to break my membranes. Dr Belfort says he could see my membranes breaking within a few days. So, what do you do? The definite reduction leading to labor, the go home and pray for your membranes to stay together, or Thursday go back and chance the reduction at 26w3d? I'm not seeing a clear safe choice. (6/25/07)
I am still pregnant, I was afraid from Monday that this reduction would be my last and that we would trigger labor and not be able to stop it. I was also worried because neither of my peri doctors were going to be the one to do the reduction. Dr Dilde did the reduction and took off about 1200cc (1.25 liters). Several times the loose membrane would block the pit of the needle and he would unattach the tube and attach a suction and draw the fluid out. I did not watch, but the mental image of that makes my skin crawl. I usually have my eyes closed with an ice pack over them. Once he was done I was contracting so i as sent over to L&D to be monitored and make sure my contractions calmed. I was there for about 4hrs, things went far better than any scenario i was given. When I initially got there they were again ready for a reduction. They loosely measured Miles at 16.9 cm and James at 8cm. These are the same measurements as last time, so I think they were just confirming that things were safe to do a amnio reduction. Two weeks from now will be 28w and improve viability so as naive as it may be to think, I think we are ok again and pending something unforeseen, we might just make it to 30+ weeks. (6/28/07)
We have two 10cm amniotic sacs, thanks to that accidental septostomy (James just took things into his own hands...actually a foot...and he has created a better situation for himself.) We had another good appointment. We have active little boys with visible (on ultrasound) HAIR! All of their vitals look good, Dr Belfort even said we are looking more like a pregnant mom of twins with preterm labor than a TTTS pregnancy. Granted we still have the 30% size discordancy, that is a characteristic of TTTS, we are not having any failure in either baby and my body is staying pregnant. My body will most likely be the reason for a pre term delivery. The cerclage is holding but that is all that is holding me together. Seeing it on ultrasound, it looks very similar to how it looked when I had the cerclage put in and I can feel it constantly versus just prior to amnio reductions. So, the goal is currently 28 weeks, which is this coming Monday. (7/3/07)
This was my shortest appointment ever at a minimal 22 minutes. James and Miles look good. Just by eyeballing it, James looks like he should be closing the discordancy gap but we will see Tuesday. They were very active and looked so big in their pockets. Miles was 13cm, James was 6cm but oddly since they both have fluid, it isn't unbearably uncomfortable. My cervix is only being held together by the cerclage, so as soon as it fails we are having babies. Dr Belfort looked at everything and said everyday from now is gravy and gave me a few more details as to when to go to L&D. So, once again "boring is good". (7/6/07)
HALLELUJAH 28WKS! (7/9/07)
We had a great appointment today. James and Miles are 2lb 10oz and 2lb 15oz, that is a 10% discordancy and is perfectly normal for twins. They also both have plenty of amniotic fluid to play in, Miles has a 11cm pocket and James a 9cm, both a little above normal but not dangerous. M cervix was measuring the same although it feel like it could fail at any minute. The boys were active today and we got pictures of them both kicking each other in the head. This is normal for brothers, right? Dr Belfort was almost chipper about the news as he came in to look at the ultrasounds and check on me. He jokingly suggested that it was all because the septostomy, something he favors. He also said we may be doing more harm at this point by having me come in bi-weekly and cut the rest of my Friday appointments. Now we just see him on Tuesdays until delivery. (7/10/07)
Another 'boring is good appointment', everything was measuring consistent. The boys are looking bigger. I am losing confidence in my ability to judge what is going on. I thought for sure my cervix would be in worse shape but it is actually better, so much for instinct. I also asked if that meant I could get off the sofa and told essentially "no" but also told that if I go into labor at this point they won't try too hard to stop it and that everything will be fine. So, it can happen, I just can't be a part of it happening. (7/16/07)
We have two healthy babies, but I am still pregnant. I've passed so many unreachable milestones and really fear now that they will never get out ... or go overdue. At my appointment today all the vitals & fluid were good. Miles is 3lb 8oz and breech. James is 3lb 1oz and vertex. (7/23/07)
We've about made it to August, something Dr Ball didn't think we'd see. We also have two active little boys in 6cm of fluid a piece (completely normal for any twins). Heart rates were 138 for James and 144 for Miles and my cervix isn't changing much. Jenille even said we may stop having to check it by my next appointment at 32 weeks, that would be great. They were active enough during the ultrasound that we skipped the non stress test. Dr Belfort again mention my much calmer attitude, to which I again told him I have far more to be calm about...it's just twins. Both boys are head down, both trying to take over my right hip. I can now tell what all the commotion is in my uterus. We also saw a head of hair on both boys, I can't wait to see them. Dr Belfort also said the 6lbs I have lost in the past two weeks is probably things just leveling out fluid-wise but I'll see what my OB thinks tomorrow.
After my appointment while waiting to schedule more I talked to a girl that also has a TTTS pregnancy. I am glad I met her and we could talk about our situations and have someone completely understand. She is on hospital bed rest at 27 weeks, had the laser surgery, lost her recipient baby, and now is experiencing pre term labor with a healthy but small donor. I can't understand why some of us get the full miracles and others just get parts. I know there is a plan, and hindsight it will make sense. I read in the Ensign yesterday an article called Not My Will by the part about praying for healing I could completely relate to realizing I was still wanting my will and that “Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other...". So, I am still learning but I love her conclusion that" Because of these experiences, I have learned great lessons about faith and prayer. I have learned that I can always trust my Heavenly Father. I found that peace and healing come as I have allowed my will to be swallowed up in His. I learned that I needed healing just as much or even more than my children did."(7/30/07)
So, maybe I cheated by sitting and weeding, having a bit of Mt Dew Saturday, and going to church Sunday; I did not expect to appear to have PIH (pregnancy induced hypertension). At my appointment Monday I casually asked about the swelling in my feet and hands and one of the techs took me over to the non stress test room and had my blood pressure checked, which was normal. We also talked about another TTTS patient (Tracy) that I had met last week. She delivered her daughters (one surviving) Monday at a weight of 2 lbs 2ozs at 27wks. I think that leaves five remaining TTTS moms for that office. Her pregnancy and delivery just reinforces to me how many times we have avoided the sadder side of our own odds and how for such a scary pregnancy we are so finely navigated through what we are experiencing.
I went back to ultrasound because Jenielle was ready. The boys were doing great. James weighs 3 lbs 10 ozs and Miles weighs 4 lbs 5 ozs. I think Jenille said those were both in the 40-something percentile. These boys are becoming more ‘normal twins’ at each appointment. Without previous knowledge, Jenille says my pregnancy looks like any other normal twin pregnancy.
Dr Belfort came in and was happy to hear how normal things were with the boys and asked a few questions in reference to PIH. Since I have had a headache for the past several days, can’t see the veins in my feet or hands, and have had blotchy vision he sent me to L&D. Overall he was happy with my progress and pleased with the boys and their health. As he was writing notes he said “alright sausage” in reference to me having another good appointment for the boys. Since his back was turned, I double-checked with Keri to see if I heard him correctly. I am told ‘sausage’ (with a South African accent so “sou-sage” ) is a term of endearment and that he calls some of the girls in the office ‘love’ or ‘sausage’. Keri said she has told him before and for years not to call pregnant women sausage, much less those who are paranoid that they we swelling. I think I embarrassed him a little. He had a shadowing doctor following him and I could see that he was amused but trying to keep a straight face. They left and Keri assured me it was a good thing, that not many of his patience does he call sausage. I assume now that after questioning it, I’m no longer on the list.
I was monitored and tested overnight and should leave by 3pm Tuesday. I had a MRI on Tuesday to find out why the two Percosets still did not get rid of my headache. Everything had come back good from my other tests, except from my urine. I had a 24hr ‘collection’ that will ended by 3pm, so that’s when I was scheduled to go home. Dr Watts said the MRI came back fine so he prescribed me something and let me go home about 6pm. It’s almost amusing (No, I’m not laughing yet) how many issues this pregnancy has had. I feel like I could check ‘all of the above’ on the list of issues one pregnancy can have. (8/7/07)
Today we avoided a NST (non stress test) because the boys were so active. James has flipped, so is now head up and Miles is about at my belly button and off to my left. Neither is technically down, essentially they are in a prime position for a c-section. Which is great because we are going to schedule a c-section for Wed-Fri of next week. This came as a surprise. Jenielle checked everything and then Dr Ball came in and took a look around and said we need to talk about delivery. I had questions about removing the cerclage and he said that the removal would most likely trigger my labor and that we should deliver based on that and other variables. So, I have an appointment with my OB in SLC tomorrow that will perform the c-section; an appointment Wednesday with Dr Berry, my OB that I normally go to and would have delivered with had I went past 34 weeks, to get another 'booster' (as Dr Ball calls it) shot; then a NST Thursday and Monday; Ultrasound Monday... then HAVE BABIES towards the end of the week! We will schedule that tomorrow with Dr Watts. On the way home I was so happy, we're finally going to have two little boys. After everything they and we have been through, we get them both. I can't wait. (8/13/07)
We have a birthday! August 22, 2007 James Winston and Miles William will make their debut via scheduled c-section! (8/14/07)
It was going to be an uneventful day...was. I had an appointment with Dr Berry today. All was well with the boys. He told us a little more as to why Dr Ball wanted to deliver early. Babies that have been in heart failure could go into it again if reaching full term, and since Miles had hinted around with heart problems it's good to get them out. He was kind of disappointed to hear that he wouldn't be doing the delivery but I plan on taking the boys to him for their pediatrician. I think he knows the little ones better anyway, he didn't want to really touch this pregnancy once he found out it was TTTS. I respect him for telling me his limits but I think he will be great for the boys.
So, after the appointment which Gracie and I went to we came home to Katie playing with playdough in the playroom on the carpet. Jamie was listening/baby-sitting via baby monitor because Kate went down early for a nap and slept the whole time. She didn't wake up until I got the monitor from Jamie and had turned it off to come inside. Thankfully she was still waking up so was not in full destructive force. We cleaned up that mess had lunch and went to the hospital for the 'booster shot' (2nd round of steroids in the behind, ehh) that Dr Ball wanted me to have. Being there reminded my why I will not have my boys there regardless that it is only 5 minutes away. I showed up with the girls in the double jogging stroller, walking alone into L&D and someone asked if they could get me a wheel chair and if I was in labor in passing. How many levels does that not make sense on? If I was coming to have babies would I bring my other 2, alone, spending time to buckle them in a stroller, parking in the parking lot, and then what good would a wheel chair do while pushing a stroller? I got to the L&D desk and said I called 20 minutes ago for a steroid shot and they all just gave this blank posed stare, as to not blink and mess up their mascara and lip gloss. Someone came to the desk and helped me, the others still staring into space.
I went to a room and waited for a nurse. About 30 minutes past, we had nothing going on the rest of the day so it was fine but why did I call ahead? Grace and Kate were fine to play in the clothes cabinet. When the nurse came in she wanted to do the NST before the shot (I had the 20 minute NST scheduled for Thursday, alone.) So I buckled the girls into the stroller and got hooked up to all the monitors. We watched Curious George and ate graham crackers, then watched Maya and Miguel, then watched Arthur, then Grace and Kate figured out how to get out of the buckles and go back to playing in the cabinets. The whole time I am still attached to machines, trying not to stress for my 'non stress test'. Two hours into the NST I find out my nurse is in two other deliveries (not blaming her for her proirity, just someone could have popped in and said it'll be a while). This would be fine if I were alone, but the girls were getting bored and I really couldn't do much in the way of calming them down, as my contractions were already two minutes apart. Something I would later have to explain that has been normal for the last twelve weeks.
She finally returned and got all my information and realized the intensity of this pregnancy, bed rest, contraction history, procedures, etc. I think she felt bad at that point for making me be there forever but it was fun informing a member of the medical staff that said they knew what TTTS was, what it is. There have been a few along this pregnancy that have said they knew, only to ask if they have had the transfusion yet...silly nurses. She gave me my shot which took all of five minutes and we were ok to leave. Not that I have been completely obedient in my 33rd week of pregnancy with bed rest, but I do not have energy for all this. I get winded walking up stairs. We came home called my sister and let her tame the girls while I tamed the contractions, heartburn, and nausea caused by activity, dinner, and the day. Tomorrow, we have a shot in the behind and that's it. Hopefully we will have a lazy day and can regain energy and settle contractions, the birthday is not until next week.(8/15/07)
We have 4lb 14 oz and 5 lb 15 oz baby boys with tons of hair, still ready to deliver Wednesday! I also have accepted that this is really happening and I need to get ready. It's starting to look like babies are going to live here. I have the bassinet/playard set up and we are pulling out the preemie and under 7lb clothes and diapers. The appointment went smooth. We had to stay a little longer because Miles would not practice breathing. The tech said "he isn't breathing", which to me meant panic or wait he doesn't breath until he is out, right? So, I learned that they practice breathing and 'breath' in amniotic fluid and we watch for the diaphragm the raise and lower. We watched Miles for a half hour and he refused to perform. That meant we could not avoid a NST, so we were there for another half hour. It was nice though, kind of 'last day if school'-ish. I am graduating from the perinatologist office and entering Labor and Delivery (and really having babies this time). (8/21/07)
