My Baby Bump

We go to CHOP every Thursday for a prenatal visit and ultrasound. I suppose getting to see baby Brent every week is the silver lining but he refuses to sit still and makes every visit a little more challenging. We heard awesome news just a month after the surgery: his cerebellum was almost completely round and began to collect fluid behind it. (Before, the hindbrain herniation prevented the fluid from getting there.) Originally it was banana-shaped and now, per the doctor, it looks almost "normal." That was amazing and definitely lifted our spirits. The amniotic fluid was also normal showing he was able to void his bladder on his own. That didn't mean that bladder & bowel issues wouldn't be present after he was born, but we took any good new we could get.

Shunting is a big worry for us. It's hard to think about your little baby needing a tube in his brain to drain fluid so we dilegently monitor his ventricles for growth. The normal range is 10mm for each ventricle (left & right) and his were around 12mm and 13mm.  His legs were extremely mobile and active and the docs hadn't seen any club footing up to this point. Around week 28 weeks the doc noticed a blood clot on the surgical site. I was attached to me, not the baby, and hasn't gotten any bigger since. I figure if the doctors aren't worried I'm not going to be either.

Our 30 week appointment was interesting. Apparently I had a little bit of membrane separation (there are two membranes that cover the baby's sac that regulates blood flow). The doc said it was normal but they usually don't see the separation until about 34 weeks. But my surgery was early at 20 1/2 weeks so it was still 10 weeks after surgery. (Most women get the surgery around 24 weeks). But again, the doctor wasn't overly concerned and told me to take it easy and decrease my activity. I sort of listened but needed to find an outfit for my upcoming baby shower and went shopping. Brian suggested the wheelchair but I didn't think we'd be that long. At 31 weeks, the membrane separated quite significantly and I was put back on bedrest and mandatory wheelchair. My weeks of "freedom" were over but at this point, I wasn't very active anyway.   My Nifedipine was increased to 20ml every 6 hours as well, to be on the safe side.

At 32 weeks the doc decided to give me steroid shots to amp up Brent's lungs, in case he decided he was ready to come out. Based on statistics,  60% of mothers who had fetal surgery gave birth between 30 & 34 weeks (or 6-10 weeks after surgery). I was already almost 12 weeks post surgery and doing good. I got a pretty unpleasant shot in the left arm and had to come back the next day for another. That night I leaked far more than normal pregnancy leaking and figured my membrane ruptured (aka water broke). We were going to the hospital anyway so when I got there they did a full exam, but found nothing. My cervix was still closed and my amniotic fluid was still normal. I got the 2nd steroid shot and was given the ok to go to Jersey for my baby shower the next day! 

My shower was so awesome. I swear I had more gifts than Babies R Us had in their store. My mom, sisters and girlfriends went all out and threw a great party. I had over 50 people come. It was so great to see all my friends and family and to finally have something "normal" in this pregnancy. Brian got to hand out the whole day with the puppies and we filled our basement with all our gifts. It was a bit depressing having to come back to Philly right after the shower and after being home, but we had no choice. I wanted to be able to go through all my gifts and start organizing and setting up the baby's room but we had to come back and wait for Brent to hatch. The next three days I found myself in a total slump but finally snapped out of it. 

I'm days away from my 34 week mark-13 1/2 weeks after surgery. I much farther along than the docs and I had imagined. It's so close now I'm trying not to will him out of me just so I can finally see him. Brian quit smoking this week and he's on day 6. I keep having the feeling that as soon as it's out of his system and he's ok with not smoking, Brent will take the cue and pop out. But as of today, 25 days left :)

Ronald McDonald House

After 2 days staying with the Host for Hospital couple, we finally got the ok to check into the Ronald McDonald House in Philly (aka the Nugget House). The room was pretty decent: two full beds, armoire, tv and full bathroom. It was so much less stressful knowing we would have a place to stay the duration of our journey. We got our own little cupboard in the kitchen and a basket to hold our food in the community fridge. There is a common room, workout room, game room, laundry room and two awesome rooms for kids to play in.

Every night a different organization volunteers to cook for all the residents and, for the most part, the food is pretty good. Since we checked in around Christmas time, we definitely had our share of ham and turkey to last awhile. Tacos seem to be the new trend, but we can't complain. The staff here is so nice and really go out of their way to help. There are definitely some residents who take advantage of the charity and we try just to remain grateful to even have the option of staying here.

I've set up a mini office in the room so I can continue to work. I've got a little table and rocking chair, filing cabinet, shelf and place for my printer. It keeps me busy and makes the days go by a little faster. I wish I could say the same for Brian- for him, it's been quite a change. He went from working every day installing commercial carpet in NYC to being stuck in a room with nothing to do. He runs errands, does laundry, some cleaning and anything to keep busy. Neither one of us are big into reading, but he has been reading a lot lately and is actually enjoying it. I guess desperate times cause for desperate measures.

The weird thing lately is that almost every time Brian does laundry, he finds at least one piece of newborn baby boy clothing in our basket. We've accumulated hats, onsies, socks and t-shirts. It's hysterical and my mom swears Brian is setting it up-but he isn't! It's the little things that make these days better.

I'm not sure if I ever could have made it this far without Brian. For anyone who knows him, he is the most caring and accommodating person you'll ever meet. Even before Spina Bifida became an issue and I was completely nauseous from the pregnancy (literally from 4 weeks until the surgery), Brian did everything for me. He understood I couldn't cook or clean or even manage to get myself off the couch. Since the surgery, he's literally done everything from helping me shower and get dressed to making my bed and bringing me food. He rents movies, buys groceries and has walked in the snow and rain for whatever I was craving. I never could have imagined being with someone who loves me as much as him and can't wait to marry him in October. He'll be the most amazing dad and I'm so grateful God has given him the patience and understanding to handle a situation like ours.

The Philly RM House will always have a place in our hearts. It's our home away from home. It's where I first felt Brent kick at 22 weeks, the place we watched my belly expand and our baby grow and the place that supported us in this very trying time. Between the House and CHOP, we know we are safe and surrounded by people who sincerely care about our welfare. But as much as I appreciate it here, I CANNOT wait to get home to our family, friends and puppies and start this new and crazy chapter of our lives.

                                                                    Kloe & Levi

The Surgery and Move

When we decided to go through with the surgery, we were told over and over about the high risk I would be taking if I had the surgery, but the benefits just outweighed the risks. In 2010, CHOP did a study to prove how beneficial the in utero surgery was.  It concluded 12/07/2010 (consequently one year prior to my surgery). Of all the surgeries, none of the mothers died and only one baby didn't make it. 100% of the babies had significant improvement with the hindbrain herniation just weeks after and shunting (of the brain) of only 50% (as opposed to almost every child needing a shunt with surgery after birth).

We told our family when we got home from the testing and our friends the next day. One of the requirements for the surgery is to live no more than 25 miles from CHOP. We lived 72 miles and were told we had to relocate. That meant figuring out who would watch the house and our current children aka our puggles Kloe & Levi. Having such an invasive surgery also meant needed a constant support person in case of an emergency. Brian, of course, would not think about not being with me and basically quit his job for 4 months (his company was so supportive and told him his job would be waiting when he got back). I had to figure out what to do about my job, pack for 4 months (taking in consideration my growing belly) and we had a total of 14 days to do all this. Freaking out is an understatement at this point.

My mom and little sister agreed to move into our house for the duration to take care of the puppies. Leaving the dogs was and still is the hardest part of all of this. We were put on the list to stay at the Philadelphia Ronald McDonald House but wouldn't know until I was discharged from the hospital if we had a room. We got in touch with Hosts for Hospitals as well which is a company that places patients into rooms, apartments or houses that people donate until they can go home.

After a day of pre-op, we stayed the night at a hotel so we can be at the hospital early for the surgery. I'm not going to lie, it was a hard night. I tried to not get upset but I kept thinking about how long we had to be away from home. 4 months is a long time.

The surgery was scheduled on my dad's birthday, December 8th, 2011, and was not without its share of drama. I am NO fan of needles. The nurse placed my IV needed next to be on the bed and I was already on the verge of passing out. When that passed and the IV was in, it was time for the epidural. Again, I was extremely close to passing out but managed to stay awake. I couldn't feel the numbing or tingling I was supposed to but no one seemed worried. Finally they wheeled me into the O.R. and I passed out.

Basically, the doctor cut into my stomach and then my uterus. They flipped the baby over to expose his back and fixed the defect.  Both me and the baby were knocked out and I would be overloaded with Magnesium Sulfate after. The Mag would make me really hot, red and miserable but was the only thing to keep me from going into labor. After the surgery I was on the Mag for 24 hours with no food or water. Then I switched to another drug to prevent labor and have been on Nifedipine every 6 hours-until the baby arrives. In other words, I could literally have gone into labor the day of surgery or any day thereafter.  There is a huge risk of my uterus bursting at any moment and was put on very strict bed rest for over 3 weeks. When I got off, I was allowed to walk around the block-that's it. For the most part, I had to use a wheelchair and still do for anything too active (like going to the museum or the mall).

I don't remember much when I came out of the surgery. I was brought right back into the room and looked like a ran over tomato. Brian said I was yelling about being in pain. Apparently the epidural wasn't in correctly. After 3 more attempts after the surgery, it was finally in. I was so hot and thirsty I couldn't believe it. I, however, just wanted my pink socks on because, of course, it matched my hospital gown.

The next few days passed slowly. Eventually I was able to hold down ice chips, then water, then food. Brian slept sitting up in the chair next to me the first night. I had to convince him to sleep in the fold out bed the 2nd night because I felt so bad. He said he didn't want to be that far away in case something happened. I wasn't able to use my stomach muscles so it was pretty painful. My first trip to the bathroom was not the most fun, but I made it through. Overall, I have to say, the surgery wasn't as horrible as I thought it was. It was definitely not a picnic but I expected much worse, and I'm happy I did.

The surgery was on a Thursday and we were discharged on Monday. The RM House didn't have a room so we stayed with an older couple. Host for Hospitals set it up and we stayed in an extra room in the couple's apartment. The view was amazing. I, of course, was bedridden and saw little of it but we were happy to have a free place to stay. Wednesday we got into the RM House and have been here since. It's a $15 a day donation and sure beats staying in and paying for a hotel.

The News

My name is Rebecca. My fiance is Brian. This is our story about Brent.

August 30, 2011 we found out we were pregnant and September 7th we had our first ultrasound. Due to an insurance quirk, we had to go to an outside prenatal specialist for future ultrasounds-a move that proved invaluable.  A routine blood test in October showed a high number of alpha feta proteins and an additional test confirmed the number was increasing. 

We an ultrasound on November 7th and the doctor noticed something was wrong with the baby.  The baby's head was "lemon shaped" and the doctor could not see the entire cerebellum. It was at that point when his tone of voice changed and he believed the baby likely had a spinal cord defect.  He wanted me to undergo an amneotheisis but we were so upset I couldn't bear the thought of a needle being injected into the fetus.  We were referred to The Children's Hospital In Philadelphia (CHOP) for further testing.

We got home and I sent Brian to work. There was no sense in both of us staying home and crying all day. He needed the distraction. I called my mom and she left work to stay with me. Almost immediately, a nurse from CHOP called to set up the 2 days of testing and counseling. The nurse said I would need the amneotheisis before I came-which was the next Monday. I called my doctor and went back for the amneo.

Just before Thanksgiving we made our way to CHOP. I had a 2 1/2 hour ultrasound, followed by bloodwork, fetal echocardiogram and an hour long fetal MRI. Before we left, we met with several doctors who confirmed the inevitable-our baby had Spina Bifida. It was that same day we found out we were having a boy. 

The doctors explained that we qualified for surgery to correct the defect. I was healthy, the baby's defect was in the L4 region and he also had hindbrain herniation. The herniation caused the cerebellum to shift and form into a banana shape, as opposed to a round shape. We had all the qualifications but were also left with the choice. Have an abortion, have the surgery now or wait for the baby to be born and have the surgery. Abortion was not an option so we needed to decide when to have the surgery. Having the surgery now (at 20 1/2 weeks) would give the baby time to heal and a better chance to prevent further injury. It would be a huge risk to both me and the baby and would not "cure" him of the disease or likely prevent any future issues. 

How could we not do the surgery? Wouldn't it be selfish it we waited? Wasn't there a chance that by having the surgery we could prevent him from further injury and perhaps future issues? We were told that whether we had the surgery now or later he would likely have the same issues in the future: lower IQ, possible shunting of the brain, ankle weakness, bladder and bowel issues, sexual disfunction among other things. At 20 1/2 weeks, I would be getting the surgery 3-4 weeks earlier than most. We saw it as 3-4 weeks of healing and prevention. There was no decision. We had to do whatever it took to help our son and give him every opportunity we could to live a normal life.