Tuesday, June 29, 2010

Post Surgery Checkup #3 (28 weeks)

Again, overall, good checkups!

28 weeks - 9 weeks to go!

Sonogram- They sent us over to the hospital to do the sonogram this morning, I'm guessing because they were booked at the office location.  Which meant 30 minute waiting time, and no cell service to keep me occupied :-)  The tech didn't turn the monitor for me to see most of the exam, but it was just a quick exam to monitor fluid, hydrocephalus, and my cervix.  Had to wait til my OB appt to get the results, but fluid was good, ventricle size was 15mm, and cervix was 3.3.  With ultrasounds, minor variances are normal, so they consider that no change from last week.  Yeah!  Pray her little brain stays stable, and she will not need a shunt after birth.

BPP/Non-Stress Test  The BPP (bio-physical profile) went well, the testing nurse does a quick sonogram to look for fluid levels, baby movement, baby leg movement, and breathing movements.  She apparently decided she was tired from the sonogram, and wanted to sleep through this part.  The sweet nurse tried gently shaking my belly (she was scared to do too much because of the incision from the surgery), had my Dad clapping over my belly (that was funny), and finally used a little buzzer to wake up.  I'm not sure she really woke up, but she moved around enough to pass.  The non-stress test is when they hook me up to monitors to watch the baby’s heart rate and contractions.  No contractions (good!).  They want the baby’s heart rate to increase during activity, and she was active enough through this part of the testing to pass with no more need for clapping or buzzers!

OB Appt - went well, we met Dr. Parer this week.  Nothing exciting.  Blood pressure was 90 something over 50 something, which is about normal for me. My weight is still holding steady, somehow!!  I must be losing all my muscle mass and replacing it with fat!  Nothing else exciting here, which is good.  It's not good to be exciting at a doctor's office.

Misc stuff:

My mom left this past weekend, and my dad replaced her as my support person.  I was very sad to have my mom leave, but also very happy to see my dad!  Mom will probably come back in August to keep me company again :)  We moved to a larger room in the family house to accomidate Matt & the girls visit.  It is nice!  I'm sure it will feel very small once all 7 of us (3 adults and 4 kids) are all crammed in here. 

Last week Mom and I went out to eat with Nicole who is also here for the same reason as me, and her mother in law.  She is super sweet, and set to have her c-section this Friday!  Pray for her and her baby boy, too.

Did I mention it's COLD here?  It's really cold!  I know all you Texas folks will just tell me to hush, but I'll trade you 100 degree heat over this weather any day!  We've had 2 or 3 nice days, but most are foggy, windy, and COLD!  I had to buy a jacket and winter boots to get me by. 

We have spent a lot of time over the last week at the Academy of Science museum, which is just down the street in Golden Gate Park.  My mom was nice enough to buy me a season pass so I can go whenever.  I need something to do close by besides shop!  The aquarium there is just amazing, I know the girls will love it when they come visit.

Matt and the girls are coming TOMORROW!!  I know Matt is stressed from running the house/working/taking care of the kids/plus getting ready to travel.  But I am so grateful he is willing to do all this to bring them to me.  I miss him and the girls so much, I'm not sure I could make it through this summer without their visit.

Tuesday, June 22, 2010

Post Surgery Checkup #2 (27 weeks)

Overall, good checkups yesterday!

27 weeks - 10 weeks to go!

The order was reversed this week, so I didn't get the sonogram results until this morning.

BPP/Non-Stress Test  The BPP (bio-physical profile) went well, the testing nurse does a quick sonogram to look for fluid levels, baby movement, baby leg movement, and breathing movements.  She passed all those areas with flying colors.  The non-stress test is when they hook me up to monitors to watch the baby's heart rate and contractions.  No contractions (good!).  They want the baby's heart rate to increase during activity, so the nurse came in at one point and started clapping over my belly and talking really loudly.  It did the trick, and was very entertaining as well!

OB Appt - went well, we met Dr. Robertson who I will see for the majority of my weekly check-ups.  I got the H1N1 shot, they've been seeing cases of it around here so I didn't want to take any chances being extremely high risk already because of the surgery.  I had some plastic sutures sticking out from my incision that were driving me crazy, so she cut those off for me.  My weight is holding steady for about the last month, although I don't know how since we eat out a lot more than usual here, and have almost zero activity level.  My theory is all my muscles are wasting away, so the fat is just replacing the mucsles.  My recovery after Ruth is born will be interesting!

Sonogram - Since a tech does the sonogram we don't get the results right away, but I've got pretty good at watching and are able to tell the key areas.  As far as I could tell, the baby's ventricles (in her brain) looked about the same, and my cervix looked about the same.  I already knew the fluid levels were good from the earlier bpp.  But I called up to the Fetal Treatment Center and talked to Rachel awhile this morning.  She gave me the official stats - 11.5 fluid, 3.6 cervix, 14mm ventricles.  They didn't look at the hind brain herniation, they don't do detailed measurements until 2 weeks from now, then again in early August.  Rachel reminded me that the sonogram doesn't mean much right now, we will know a lot more after Ruth is born and she has her first solo MRI.

Matt and the girls are coming next week, I am so excited!  It will be hard not to be able to keep up with them, but I think just being around them will help me so much.  I was reminded by Rachel not to over do anything while they are here, and Matt does a good job of reminding me as well.  Being away from them has got to be one of the hardest things I've ever done.  I've never been away from them for more than a 2 or 3 days, and even that is pretty rare.  By the time I see them next week, it will have been a month!!

Friday, June 18, 2010


It's official, I guess I was pitiful enough being separated from my girls and loving husband, they are coming to stay with me next month!!

Thursday, June 17, 2010

Post Surgery Checkup #1

Sorry this is a couple days late. The internet connection here isn't real reliable so I tend to use my phone more than my computer.

Checkup went great.

26 weeks:

Sonogram: Ruth had done a complete flip from when she was in the hospital and is now completely head down. She was butt down in the hospital. Fluid was good, cervix is now back to pre-surgery thickness (it got a little thin right after the surgery), and baby looks good. The did not do all the measurements on her since it was still close to her last ultrasound (when we were in the hospital), but the hind brain herniation looks slightly better, and her ventricles are about the same/stable - which is good! We were told not to get too excited about this, but that is the biggest hopeful benefit to this surgery, is improvement in the brain symptoms.

After that we headed upstairs to meet with Rachel and Tamara (the MOMS nurse coordinators), who gave me "permission" to start walking more. So I can walk around inside the house now (not pushed in a wheel chair), and slowly start increasing the amount I walk elsewhere. Tamara showed us where our next appts where and we ran into Nicole, the other MOMS patient.

OB/Perinatologist appt: I had a super sweet nurse who went over all the new patient info with me. I met with Dr. Cheng today, I saw her some in the hospital and really like her. They didn't do a whole lot in the appt, checked out my incision to make sure it was healing well, took my weight, blood pressure, all the normal stuff. She went over the results of the sonogram with me a little bit. And I was told to go to the lab to do my glucose test, since I hadn't done that before I left Texas.

Anenatal Testing: This is just to monitor the overall well being of the baby. They first did a mini sonogram to look at the fluid, movement of the baby, and if she does any breathing movements. Fluid looked good, Ruth wiggled and kicked her legs, and did some breathing movements! Next they hooked me up to monitors to check the baby's heart rate and if I had any contractions. They are looking for accelerations during movement, which she did some, but the nurse told me they don't expect much with this young of a baby.

So overall, good report for week #1!

Monday, June 14, 2010

26 weeks and counting

This is Sara again, Matt headed back home early Sunday morning to work and take care of little girls. My mom got here Saturday afternoon to take over the role of "Support Person" for the next two weeks. Per the MOMS Trial, I need to have another adult here with me at all times as my support person. We can have kids here too, but there needs to be an additional adult besides the support person here for the kids. I miss Matt and the girls terribly, and hope they can come stay for a little while this summer.

The first week after the surgery is over, and while I am still sore and weak, and in pain at times, it's been a fairly good recovery. I was glad to get out of the hospital, I think that alone helped my recovery since I wasn't stuck in a bed attached to monitors 24/7. Ruth is still doing great as far as I can tell, she kicks around a lot to remind me. We go to my first checkup since leaving the hospital tomorrow, I will be sure to post a full report. I am 26 weeks along this week, the first big milestone to reach is 28 weeks to give Ruth the best chance at doing well outside the womb. Of course, our goal is to reach our c-section date of August 30th, when she will be 37 weeks. But many times after having open prenatal surgery, the baby is born on average about 10 weeks after the surgery.

So for now, I am staying at a place close to the hospital called the Koret Family House. This place is amazing, it is here for families that have children being treated at UCSF Children's Hospital. It really puts some things in perspective, seeing these happy little ones with cancer. I have met some incredible families in my short stay here, and I'm sure this summer spent here will change my life. If you need a good charity to donate to, this is a great one. Click here to go to their website.

There is also one other lady here that is in the same trial/surgery as me, although she is on her last leg, since she had her surgery about 2 months before me. She is doing great, her baby is doing great, and she is set to have her c-section on July 2nd. I hope we do as well as her! Her blog is here - http://www.lanceandnicoledyer.blogspot.com/.

Tomorrow is checkup day, I can't wait to see how Ruth is doing. I'll be sure to post a report here and on facebook sometime tomorrow.

Wednesday, June 9, 2010

Moving Day

As we had hoped, our night turned out to be quite uneventful. We were left alone most of the night, so we were able to get some decent rest. Once the sun came up, the nurse came in and told that things were looking good for our discharge today.

After getting a quick breakfast, I made 2 round trips to the family house to drop off 3 deliveries and Sara's camera. If Sara did get discharged, it would be just her and I making the move. The less we had to carry, the better. Remember, Sara is still in a lot of pain and needs to take things easy. She can't be expected to carry much of anything. I also needed to be able to push and otherwise maneuver her in her wheelchair once we got to the house.

Before I left the family house, I made the beds and opened the window so that the room would be comfortable by the time we got there.

While I was gone, Sara said that the director of FTC paid her a visit and cleared her for discharge! Tamara from the Fetal Treatment Center also stopped by to give us the list of do's and don'ts and wish us well. She also worked with me to pick out my flight back home on Sunday to see my girls. I cannot wait to see them!

Last thing left for me to do before they would allow discharge was to fill Sara's prescriptions. They have a Walgreen's at the hospital, which was really convenient for us since they already have our insurance info on file. I dropped them off and grabbed a quick lunch. When I came back, they gave me a paper sack full of drugs.

After that, we made our way out the door! The cab ride was brief. I pushed Sara into her room and that was about all she could take. She laid down to start taking a nap. I checked in at the office briefly before I joined her. About and hour and a half later we both woke up.

I found a grocery store a few blocks south of the family house called Andronico's. It reminds me a lot of Tom Thumbs back home. I was pretty hungry so I grabbed just a few things to get us through the morning and then picked up some takeout for dinner.

We ate in the dining area at the family house. A few of the other families staying here came through while we were eating. Lots of kids here that need lots of help. One of the families we met had been here since August of last year. One of their sons was 3 months old when they got here, so he practically grew up in this house. Seeing him made me realize I've been needing a little kiddo to pick on. In that regard, this seems like an opportunity rich environment.

Speaking of people that are a lot of fun to pick on, I'm looking forward to seeing my mother-in-law on Saturday. I'll be passing the baton on to her before I head back on Sunday.

Tomorrow I'll probably do a little more grocery shopping and then do whatever I can to keep Sara comfortable and otherwise settle her in. She's going to have to take it easy and not over do it in the coming weeks, which is no easy task for my wife. Good thing she likes to read!

Please continue to keep Sara and Ruth in your prayers!

Tuesday, June 8, 2010

Primed For Discharge

We had such a positive day yesterday. When we went to sleep last night we were hopeful that Sara would be discharged today. Around 6AM Sara was woken up by 2 nurses who were concerned about a 'decel', short for deceleration. That's basically when Ruth's heart rate drops to an alarming rate.

We had seen decels a couple times before, but they all went away pretty quick which didn't alarm most of the OB's that we talked to about it. This one wasn't disappearing as quickly. The nurses quickly grabbed an OB and a sonogram machine. By using the sono, getting Sara to reposition, and trying to move her by pressing on Sara's abdomen they eventually got Ruth's heart thumping as it should.

The episode spooked us a bit. The night before the nurses removed both of Sara's IVs since it looked as though they wouldn't be needed any more. After this experience, they decided that it would be best to have at least one IV readily available for access, just in case.

So why did it happen? No one was exactly sure. Someone in the response party suggested that sometimes the baby puts her foot or something on the cord, restricting the flow of oxygen to herself. Throughout the rest of the day we met with multiple OBs. Most weren't really concerned with it. They basically said that what we saw does happen from time to time, and there's not any strong evidence that suggests that there is anything to worry about. There were a handful that felt that it was a bit more concerning.

Since then her heart rate has been beating strong, right where it ought to be.

As I was getting myself some breakfast, Dr. Wu made a visit to Sara's room. He was in the "not a big deal" camp on the decel. Overall, he seemed very pleased with how well Sara and Ruth were progressing. Before letting us go, he wanted to run Ruth through one more sonogram today and a fetal echo tomorrow morning. Assuming everything looks good with both of those and nothing else comes up, he projected our discharge tomorrow.

The sonogram was ordered and then someone showed up with a gurney - a bit of a surprise for us since all sonograms over the weekend were done in Sara's room. Sara climbed on and they wheeled her down to the 3rd floor. The sonographer checked for the usual features: fluid, cervix, membranes, placenta, etc.  Everything looked great! Most notable observations were that all membranes were still in tact, Sara's cervix was most still closed and stable, and the fluid level had increased!

Back at the room, I checked into the office for a short while. It sounded like the exam was keeping my team busy and everything was being handled quite alright without me. Sara & I really appreciate the understanding, flexibility, and support that everyone back at the office has provided thus far.

It is clear to the hospital staff here that we have a LOT of support from our family and friends back home. When you enter Sara's room, the scent of Lily's hit you like a brick wall. We've received a total of 6 generous deliveries so far. They definitely have made this dreary hospital room much warmer. Moving all the flowers plus our personal effects would be a bit difficult in a single cab ride, so I decided to make a run to the family house to relocate 2 of the deliveries.

It was a cold and windy day in San Francisco. You'd think I'd be smart enough not to wear flip-flops in this weather, but I refuse!. The flowers weathered the windy 10 minute hike pretty well.

Not long after I got to the house, Sara called. Apparently as soon as I left, a gauntlet of doctors and familiar faces dropped in. Dr. Farmer, the local MOMS trial 'boss', stopped in to talk for a bit. She said that she had called to check on Sara throughout the weekend and that Dr. Wu was extremely pleased with Sara's recovery. In her eyes, things were looking really good so far. Then Rachel and Tamra dropped in to give Sara her schedule of appointments for the duration of pregnancy. They've also already scheduled her c-section for sometime in August. We're told that most participants don't make it that long. The average right now is about 10 weeks after surgery. We're going to do everything in our power to beat that average and meet Ruth on the day Sara's scheduled.

On my way back to the hospital, I stopped by Jamba Juice to get Sara and I a smoothie - I thought she might need one. When I back to the room, my sister called and asked if we wanted to Skype with the girls. It was really good to see them. They were all pretty excited to see us, too. By the end the call they had lost interest and were bouncing off the walls in some other room - all except our youngest, Princess A. She stuck around until we hung up. Clearly they're having a great time and staying busy where they're at. That's exactly how we prefer them to be so that they don't miss us too much. The call did challenge us to reflect on how long this summer is going to be. I have a feeling that it will just make our family's relationship and love much stronger as it will challenge us all to reflect on the things that we otherwise might've taken for granted. We'll make this work-for Ruth, we have to!

Tonight, Sara ditched the hospital gown for her one-size-fits-all MOMS trial t-shirt and pajama pants. I tried to get a picture for the blog, but she wouldn't let me. Anyhow, we're hoping for an uneventful night and discharge tomorrow! Please keep Sara and Ruth in your prayers!

Monday, June 7, 2010

Learning to Walk Again

Sunday morning we woke up to Dr. Wu, one of the perinatologists from the fetal treatment center, giving us a status report. Everything up to this point was looking about as it should. Sara had weathered the effects of the magnesium sulfate, Ruth's heart looked great, and no contractions. The only thing that he wanted to wanted to watch closely was Sara's cervix. It was measuring a little shorter than it did before surgery. Also, the nurses heard a crackling in her lungs leading them to believe there was a bit of fluid build-up - apparently a common side effect of lying flat on her back for a few day. It was also likely the reason she was having difficulty keeping her oxygen saturation up. That would naturally get better as she regained her ability to walk around more. Until then, they encouraged her to wear oxygen and practice breathing using a device that measures how much air she is able to take in in a single breath.

Next goal that he set for Sara was to start weening herself off the epidural and the IV administered pain control and start using more of the oral pain meds. It seemed like quite an ambitious goal at the time as Sara was still feeling a bit tender. Sara was definitely up to the task. She's not used to being as dependent as she's had to be these last few day. She was also quite ready to regain feeling and control back in her legs as soon as possible.

Sara was finally feeling well enough to speak to family on the phone. First call she made was to our oldest daughter, Princess K. She had a rough time knowing that her mother was going in for surgery and was anxious to speak with her mother as soon as possible afterward. After they caught up, Princess K handed the phone to her other sisters, all of which were excited to hear from their mother. It had been almost a week since we had seen any of them. Being away from them all summer is going to be especially tough on Sara. We're both very thankful that we don't have to worry about our girls while we're up here. We know that they're in very good hands.

Ruth had the same series of test as the day before: a fetal echo and a sonogram.

In the fetal echo, the doctor noticed that a key vessel in Ruth's heart was starting to constrict - an expected side effect of the Indomethycin, one of the tocolytics that was administered to Sara to keep her uterus from contracting. She didn't see that in the fetal echo the day before and since Sara was already off the Indomethycin, she expected it would get better on its own. Otherwise, everything looked great.

The sonogram went pretty well. There were no surprises and everything looked about as well as it did the day before. Sara and I were of course particularly interested in how the cervix measured. It had not changed, which was really good news.

The doctors had also ordered a chest x-ray for Sara to check on her lungs. As expected, one lung was showing a little bit of collapse, but no fluid had built up. Apparently that was good news, as no one seemed terribly concerned about it. They just encouraged her to keep doing her breathing exercise.

Throughout the day Sara had been working with the anesthesiologists to turn down her epidural. By late afternoon, they had turned it off and disconnected it altogether. Sara started to get feeling back in her legs!

I left to get some lunch. While I was out, Sara was going to work with the nurse to try walking to the restroom and back to her bed. When I got back, she was lying in bed obviously in a bit of pain. Apparently her attempt to walk again went well until she had to get back in bed. She put a little too much strain on her abdominal muscles which were obviously still tender.

My dirty clothes needed to be switched out for a clean set, so I made a trip out to the family house. By the time I had gotten back, the anesthesiologists had removed the catheter for her epidural - great news! Not long after it was removed, Ruth started doing back flips in Sara's womb. Ruth has always moved around quite a bit, but this time her feet had found the incision in Sara's uterus, causing Sara a great deal of pain.

Throughout the rest of the night Sara made a few more roundtrips from her bed to the restroom. Each time it seemed to get a little easier for her. Eventually she was able to make the trip mostly unassisted. Clearly she was still struggling with the pain, but it didn't appear to be nearly as bad as the pain she felt during that first trip.

Sara went to bed early that night. The day had clearly taken a lot out of her.

Tuesday morning seemed to be a bit quieter than usual as we were pretty much left alone. I think its a good sign that Sara's become less interesting to them.

After getting cleaned up, I made my way to get breakfast. On my way back to the room, I ran into the MOMS coordinators, Rachel and Tamra, at the bottom of the elevators. They were on their way to check in with Sara and deliver a spiffy wheelchair.

Rachel and Tamra basically provided us with an overview of what to expect for the rest of the week. Not long after they arrived a tech showed up to do another fetal echo on Ruth. He cleared the room to get his machine in and do his job. Of course since he was a technician and not a doctor, he couldn't tell us what he found.

Sara needed me to get a few things out of her bag and I needed a fresh set of clothes for the next day. So I put a rosary in my pocket, asked Sara to call me when the fetal echo results got back around to her, and started walking back to the family house. By the time I got to the house Sara called me with the results. Everything looked great. The vessel was still a bit constricted, but it looked better than the day before.

I then went downstairs to meet with the family house staff. They were all very nice people. I asked if we could move to a room not on the south side of the building. They were pretty full at that moment, but they explained that they would try to work with us, especially since we were planning on staying for quite a while. I'm hopeful another room opens up before Sara checks out of the hospital.

Before heading back, I decided to check into work. Before the MOMS trial, I was planning to be in Chicago all this week to support our annual regulator examination, so I wanted to check-in and make sure everything was going well. Getting a decent Internet connection has proven to be a bit of a challenge, which surprises me seeing as how this is San Francisco. Still, I'm happy they at least had one at the family house. It was enough to allow me to get done what I needed to.

I made my way back to the hospital. When I got back I noticed that Sara was making much more frequent trips to the restroom with a bit more ease.  The nurses realized that Sara had pushed the button for a dose of hydromorphone only once the entire day, so they took her off the IV. Since then, she has enjoyed being able to move around a little more freely.

Sara still hurts, but not nearly as bad as she did before. Though she's moving around a little better, it still takes a lot out of her. I have a feeling she'll be discharged in the next 24-48 hours, but its definitely going to take at least a couple weeks before she's able to move more like her old self. Even then, she'll likely have to limit her activity significantly.

Whatever it takes to keep her pregnant! We can't wait to meet Ruth, but we'd prefer to wait at least a couple more months. Please keep Sara and Ruth in your prayers!

Saturday, June 5, 2010


Immediately out of the OR, Sara's only complaint for a while was that she was incredibly nauseous. The anesthesiologist gave her some medicine to help with that. About thirty minutes later her nausea was pretty much gone.

Her nurse parked by her bed for the next 3 hours to tend to Sara and monitor her and Ruth's recovery.  The main thing that the nurse was watching for were uterine contractions - the Achilles heel of any fetal surgery. There were a few light contractions, but that was expected since her uterus was trying to recover from an extreme amount of distress. After about two hours, we did not see any more contractions.

They kept it under control through the use of tocolytics which are drugs meant to prevent her uterus from contracting.  The tocolytic used in the first 24-36 hours is a drug called Magnesium Sulfate, which was also administered alongside anesthesia during the surgery. We had been warned that since the drug would make her feel very crummy because its relaxing effects do not target her uterus exclusively. Naturally, we were a little surprised when Sara didn't seem to be feeling as bad as everyone had told her she would feel.

Things were looking pretty good, so they started clearing the room and getting things ready to allow Sara and I to get some sleep.  Sara's pain at this point was relatively under control. As the night progressed, Sara began to feel more and more pain. The nurse and the Anesthesiologist were in and out all night trying to determine the best way to manage her pain. By the time morning came, they pretty much had that mission accomplished. She dozed in and out throughout the rest of the day.

On the day after surgery, they did a couple tests. The first was a fetal echo cardiogram to make sure that Ruth's heart weathered the stress of surgery well. Everything looked good on that front. The second was an ultrasound to check Ruth's environmental conditions. She had plenty of fluid and we were told that everything else looked pretty good.

After the tests, I made my way over to the family house to check in and drop off our bags - we needed a little extra space in this tiny hospital room. The rooms at the family house are quite modest, but its not a bad place at all and its in a neighborhood with lots to do.

The room that we were assigned is on the south side on the top floor. This particular day was uncharacteristically sunny, so the room was nice and toasty. Wouldn't be a problem if there was an A/C, but I've discovered that most places here don't invest in central air as its usually not necessary.  Needless to say, I'm going to try and get us relocated to a different room before Sara gets moved in.

I ran into lots of good people in the common areas. The common areas include a living area, a library, a kitchen, a dining area, and a utility room. I had only brought enough clothes to last me a week, so I did our laundry before heading back to the hospital.

That night we both got some decent rest.

Friday, June 4, 2010

Fetal Surgery Day

Since we had checked in, everyone had pretty much left us alone - a welcome change of pace for us when visiting a hospital. My memories of hospital stays, all of which were when Sara delivered, were of nurses waking us up every hour or so to check her vitals or make her pop a pill. For the most part, the nurses here did whatever they could to let us sleep through the night. Even leading right up to the time of the surgery, we were given plenty of time to ourselves.

During that time we did a bit of reflection on what was about to happen. Very mixed emotions going into something like this. On one hand, you want to hurry up and get it over with. On the other,  you worry about everything that could possibly go wrong and whether or not you're doing the right thing. I was delivered very strict instructions from Sara not to freak out before they wheeled her into the OR. All things considered, I think I did a good a job. I think we both found comfort in the fact that there's no other place in the world we'd find a better qualified team to do this procedure. Our faith and the prayers and support of our family and friends carried us the rest of the way.

Not long after noon, our quiet visit to the hospital became extremely busy.

The anesthesiologists arrived to place the catheter for Sara's epidural. It was a tense moment for us both since the last time she had an epidural, when she gave birth to our third daughter, her spine was pierced giving her nasty spinal headaches for the 3 months that followed. Shortly after the resident inserted the catheter, the attending with whom we had discussed our concern a day earlier assured us that everything looked great and we would not have to worry about any headaches.

Dr. Farmer, the head surgeon and MOMS trial 'boss' at UCSF, came into our room to greet us one last time before the operation and have Sara sign a couple more consent forms. As she was signing about 3 or 4 other people were crammed in our room getting her IV pump and bed ready to roll down to the OR on the 4th floor . Leading the effort was a very sweet older woman with a harsh Irish accent. She really took the edge off what was an otherwise intense journey for Sara and I. After getting Sara situated in the OR prep room, she approached the bed, held Sara's hand in both of hers, and said, "Good luck!"

Sara and I hadn't been in the OR prep room more than 5 minutes when they started to relocate her to the OR which was only steps away.  I was not allowed in there, so when we got to the OR doors I asked them wait a few more a seconds to allow me to give her one more kiss and a sweet nothing.  She looked great and had a confident smile on her face.  Lots of people were already waiting for her in the OR. As they pushed her bed the rest of the way, I was reassured many times that they would take good care of her. I then showed myself out.

That morning Sara was told not to eat or drink since she was going under deep anesthesia. It was not easy for her. I had been careful not to eat in front of her and my breakfast that morning was very light. Per the advice of the study coordinator, my first stop after leaving Sara was to grab a big lunch and bring it back to the room. I can't say that I was all that hungry at that point, but I wanted to make sure I was the best I possibly could be when Sara came back to me.

When I got back to the room, I had realized that our oldest daughter had been trying to call me. I called her back right away. Obviously, she was concerned for her mother and her baby sister. She's the only one among her siblings that fully understood the weight of what was taking place. I did what I could to comfort her over the phone - in a way it helped me cope with the emotions I was dealing with it at the time, too. I asked her to pray for Ruth and her mother and promised that as I got news, I would call her first.

After I ate my lunch, my plan was to start praying. But before going into the OR, Sara made me promise to keep everyone up-to-date on the latest through updates on her Facebook account and my Twitter account. In every update I provided, I asked for prayers for Sara and Ruth. Sara and I firmly believe that the many prayers that were offered up by family and friends had a heavy hand in getting Ruth to this point. I was humbled by the amount of people that informed me that they were praying during the surgery. There were a LOT! My father told me that 11 of my extended family members who were gathered at his house to celebrate his ordination had set aside a few minutes to pray a rosary together. There were countless others who were praying AND asking others they knew to pray for Sara and Ruth! We are truly blessed!

Waiting for word back from the OR was one of the most stressful experiences I've ever had. I expected it to be a while before I heard anything, but first word did not come until almost 2 hours since I had left Sara. I was told that everything was going well. The neurosurgeon was working on Ruth's back repair and should be done shortly.

About 30 minutes later, the neurosurgeon met me in Sara's room. He had just finished and explained that everything had gone very well. The lesion was small, as expected, and there was enough excess skin available such that he didn't have to use a skin 'patch' to close it. He expected that the remaining closures should be complete in about 30-45 minutes.

About 45 minutes later, Sara was brought back to the room. She was obviously feeling a bit nauseous - an expected side effect of the anesthesia - but otherwise she looked well. Everyone that surrounded her reassured me that everything went fine.

I leaned down close to Sara's head. She was obviously on the edge regaining coherence. First words I heard out of her mouth to me were, "Is Ruth OK?"

Dr. Farmer was not too far behind. She explained that the procedure went as well as it could have gone and that both Ruth and Sara suffered minimal blood loss. The study coordinator who was also in the room called it  "textbook".

I was encouraged and relieved by the positive reports delivered by everyone - possibly the best way to start Sara's journey toward recovery...

Wednesday, June 2, 2010

Prenatal Surgery!!

We were randomized to PRENATAL!!  Very excited, but also very scared at the same time.  I believe this is God's plan for Ruth, and I trust in Him completely.

So, to recap this crazy day:

We met with the pediatric urologist, anesthesiologist, spina bifida clinic nurse coordinator, neonatologist, and the head of the MOMS Study, prenatal surgeon Dr. Diana Farmer.  We also had the fetal echo, which was normal as expected. 

We got our MRI results from yesterday.  The lesion in S1, as we knew before.  Her ventricle size in her brain is now about a 15mm (it was at 13/14mm at the last mri). Her Chiari II malformation in her brain is BARELY THERE!! We barely qualified for the study because it was so mild. That is really good news - Yay!

We met back at the FTC for randomization. We signed consent forms, both of us took a pychological test, and then our fate was up to a computer! I think I prepared mentally more for the fact that we wouldn't get the surgery, than the fact that we would!

So tomorrow (Thursday) night I go to the hospital to be admitted. Friday I don't get to eat, they pump me with medicines and place the epidural (for pain management after the surgery). The surgery itself is scheduled for 3:30 PM CST. I will be under deep general anethesia for the surgery, and will have the epidural for pain for about 48 hours afterwards, with a lot of medicines to prevent premature labor. I do know with this surgery, since the placenta is up front, they will have to take out my uterus and do the surgery from the back side of my uterus. They will not take Ruth completely out, just stick her little butt out to repair the lesion. The biggest risk is premature birth. I will remain on medicine around the clock to prevent contractions until she is ready to be born. Ruth needs to stay in until hopefully 34-36 weeks before making her complete appearance in this world. She will be 24 weeks at the time of the surgery.

We really appreciate all the support, love, and prayers received. I know it's no accident we are here now. Prayers still very much needed for her health, and mine, through this surgery and recovery.

Here is the video that talks a little about the prenatal surgery:

Evaluation Day 1

Sorry this post didn't come last night, we got back really late and I just crashed.  Here is a recap of the day, everything is looking very positive right now!

7:15 - met with the study coordinators, Rachel and Tamara.  They were both extremely nice, and made us feel very comfortable.

8:00 - detailed sonogram with Dr. Filly.  We were told he is a super star in the world of sonograms.  No surprises there, Ruth's lesion was at the same level we expected, she still has club feet and Chiari II, nothing else was wrong with her (no kidney/heart issues, etc).  This was a big hurdle in the study, her spina bifida has to be what they called "isolated".   Meaning, everything she has abnormal has to do with her spina bifida, there is nothing else wrong.

Then we met with the pediatric neurosurgeon, Dr. Gupta.  He answered all our questions, and made us feel a lot better about the risks involved with the surgery, and what to expect with the post natal surgery as well.  He would do Ruth's surgery, whether it is the prenatal or postnatal version.

After that we met with one of the perinatologists, Dr. Wu.  We were both very impressed with him.  He took my history, and talked some about the risks of the surgery.  He also told us how they would do the prenatal surgery.  Since the placenta is at the front/top of my uterus, they would remove the uterus and make the cut at the back/top.  They would pull Ruth so that her little butt sticks out through the opening and do the surgery like that.  She would never be completely removed from my uterus during the surgery.  She would of course, hopefully sometime around 37 weeks, be born with a regular c-section.  I would never be able to have a vaginal birth again due to the type of incisions (plus having two c-sections in the same surgery), but that really isn't an issue for us since Ruth is our 5th and last child.

We had a quick lunch, quite the views here!  The weather is really yucky.  I miss my 100 degree Texas weather, this cold and windy stuff is NOT for me. :-)

After lunch, we went over to the NICU (what they call the Intensive Care Nursery here) and met with the social worker and took a tour.  It was really hard looking at all those struggling babies, but they were so cute.  I can't wait to meet Ruth.

We then took a cab across town to the imaging place for the MRI.  Ruth decided to be VERY wiggly during the whole thing, and it ended up taking more than 3 hours.  I had quite the headache after that was done.  It is NOT fun laying in a tunnel completely still for that long.  I am so glad that was over!! 

We didn't get out of there until after 6 PM (local time).  We walked around to find some place to eat, fighting all the Giants baseball fans since the stadium was right there.  We ate, and took a cab back to the inn.  I was so beat I went pretty much straight to bed.

We had a little extra time this morning since we don't need to be up there until 9, and my body is still running on TX time zone, so I was up around 5. 

Today, we meet with the pediatric urologist, prenatal surgeon, neonatologist, social worker, the spina bifida clinic coordinator, and have a fetal echo.  After all that, the doctors all meet and decide our fate.  We should know if we get the surgery or not by the end of today!!   Prayers still very much appreciated.