7 months

I can't believe Brent is 7 months...and about 20 pounds! His rolls are getting rolls but he's so freaking handsome, who cares?!

We had our 6 month follow up with CHOP in September.  No issues to report:) The clinic pediatrician was concerned about Brent's weight because he should be on the leaner side to make it easier for his muscles. Brent has a different agenda however. He likes to eat but he's not eating anymore than any other kid. He's on prescription formula, Elecare, and has cereal, veggies and fruit once a day. I recently had him try organic puffs-didn't work out for him.  He gagged like I just fed him garbage. It was hysterical. Today he tried cheese puffs (like doodles). Those he liked.

  Early Intervention is going well. Mr. Brent doesn't like belly time mainly because he'd rather we did all the work for him. He had one day when he rolled over but he hasn't shown much interest in it since. He can spin himself in a circle though and get himself from one end of the crib to the other when he sleeps. (Yes, he's in his big crib now. He moved at 6 months because he was touching both ends when he slept so I figured it was time. I don't think I got any sleep the first couple nights.) He's delayed a bit but pretty much at his corrected age (6 weeks) so we try not to worry. He's working very hard at sitting up. He still needs help but is always trying to sit up by himself. He's got laughing down and has now starting this fake coughing for attention. He's so smart...and a bit spoiled. His PT says it's not spoiled, it's indulged :)

Brent is just doing so well it's weird to think back on our journey. It's almost a year since we got the diagnosis and since we had the surgery. It feels like a lifetime ago. There are some times when I miss Philly and the Ronald McDonald House because it's where it all began. That's where I watched my belly grow and where this crazy little man began his life. Brian and I got married this past weekend and even though Brent was supposed to be a "honeymoon baby" I am so glad he was a part of everything (even though he passed out in his wagon :) No matter how many plans or lists I make, the unexpected seem to make everything fall into place.

My little Bubba, aka Monkey Face, aka Chunky Love, aka Chubby Butt

3 months

In May, Brent was admitted to Jersey Shore Medical Center after a visit to the ER. I thought he was breathing weird and wheezing so they wanted to do some tests. He had retraction breathing and whistling-not wheezing. The barium swallow test confirmed he had acid reflux but it wasn't going into his lungs. So after day 2, the docs think his symptoms are from reflux and should go away with the reflux. They upped his meds and sent us home.

So, to help the reflux, Brent's GI doc suggested adding rice to his formula. Well, I'm not completely sure that the rice really helped but he gained 4 pounds in 3 weeks! I couldn't believe it.

Brent started with Early Intervention this month. The physical therapist was really impressed with his full range of movement and coordination. He is making all the baby milestones and not 6 weeks behind from being premature. He started smiling at 2 months and can almost keep his head up. Next month he's supposed to start laughing and I can't wait.
We went to CHOP this past Wednesday for a video dynamics test to see if Brent was refluxing in his kidneys. Nope! Everything was fine. His bladder contracted normally and his sphincter muscle relaxed when he peed. The doc said that he might have an overactive bladder but it was nothing to be concerned about. I'm hopeful he won't need a catheter ever!

So at 3 1/2 months and 13.11 pounds, Brent is a normal baby. He really has no Spina Bifida symptoms. I know that nothing can be predicted now but I believe Brent is the best case scenario. I'm so happy we did the surgery as early as we did because I think it really gave him an advantage and more time to "fix" himself. He's growing like a weed and perfectly perfect.

The first pic is at the hospital..you can see the chubbiness in action :)

CHOP follow up

CHOP follow up

Well we had our first follow up with the Spina Bifida Clinic at CHOP. It went pretty well. Everything checked out fine with Brent. He is up to 6.8 lbs and his head measured 35 cm (31.5 cm when we left the hospital 4/6). Doctors are happy with his progress and he even "accidentally" rolled over during the exam :)

Early Intervention came out today and did their exam. There wasn't much to "examine" since he's only 6 weeks and 5 days but he managed to stay awake during the visit. His due date was 4/20/12 so he's 6 days corrected. He can lift his head and move it side to side while on his stomach. He responded to the bell and light tests and act just like any other baby.

So our biggest issue right now is Brent's reflux. We switched formula to Nutramagin and hope that helps his belly calm down. We cannot wait for him to outgrow the caffeine hoping that will reduce his reflux. It's so hard to see him in pain but I think it's harder for us then it is for him.

So our little preemie is growing and making moves. He's eating about 2-3 oz per feeding 7-10 times a day. He's still wearing newborn clothes but getting a little too tall for the sleepers. I can't believe he's too big for anything :)

Finally Home

Finally Home

So we finally made it home on 4/6/12. It was a week later than anticipated but finally came. The day before our original discharge date, Brent decided to stop cooperating and dropped his heart rate (bradycardia) too many times for the doctor's liking. His reflux may have been the reason but they wanted at least a 48 hour period with no significant issues. They allowed the "bradies" that occurred when feeding and didn't consider those an issue. After two failed attempts, he finally passed his car seat test and we were seeing the light at the end of the tunnel.

After 122 days since we first left NJ, we were finally on our way back home. Brian had already taken most of our stuff home the week before but as soon as we heard the news we were leaving, he rushed back to the Nugget House and packed up the rest. I was pretty nervous before we left. Now we had to take care of this little boy all by ourselves. No help from the nurses, no breaks, no sleeping.

Brent came home on a monitor to watch his breathing & heart rate. He is on caffeine twice a day so the docs need to monitor him until he's off to make sure he doesn't need it anymore to breathe. We are looking at the beginning of June, at the earliest to lose the monitor. It's going to be quite strange to have a baby not hooked up to some kind of wires.

The first night was rough. Brent makes a lot of little noises and grunts. On top of that, his reflux is bad making him pretty uncomfortable through the night. We tried to put him in the bassinet but he wasn't having it. We slept in the living room the rest of the first week. It just seemed easier having the kitchen so close and easier to grab him when he wanted to be held. Week two seems to be a bit easier. We switched his formula from Neosure to Infacare and I think it's helping his reflux a little.

Breastfeeding has been a challenge at home. I'm so tired and with a low supply to begin with, pumping and feeding is a non-stop affair. I'm not going to lie, it's so much easier to grab a bottle then nurse and pump, but I feel way to guilty to keep it up. I wanted to give the new formula some time to set in to see if it helped his reflux before I started to nurse again. Unfortunately, it's decreased my supply even more. I can't even pump an ounce in a half hour session (that's all I could do before). Because of this, that is why we had to supplement formula in the first place. So I'll give him what I can and supplement as long as he needs. As long as he keeps growing. (He was 5.8 lbs on 3/21 and 5.14 lbs on 4/9)

I have to say though, having him home is really nice. Just being home is really nice. It took a few days to get our lives back together and unpack, but we are getting there. We immediately set up his room and slowly worked through the house. I thought I would start back to work in a few weeks, but now, I'm thinking a few months. But Brent is doing great and we have some follow up sessions scheduled as well as Early Intervention services. So far so good.

Almost Home

We got the news today we should be able to make it home by Monday (3/5/12)! Bye-Bye Nugget House. We appreciate all you've done but we're ready to get home.  We just have to get Brent to maintain 48 hours with no Brady (and of course, he just had one as I write this).

It's day 21 for Brent and he's doing awesome. His feeding tube was removed this week because he's been taking all his feeds via mouth. They took him off a set feeding schedule which is great, but has thrown me off. I finally got the 3 hour routine down and now it's gone. But it's progression so I'll take it. He passed his hearing test and urology signed off on him.  His MRI was great-everything normal for a baby with an MMC repair. His ventricles were a little large, but it's expected (his left: 17 ml; right: 14 ml). Hopefully we can do the car seat test tomorrow but we need a definite discharge date to do it.

Feeding for me has been a challenge. Actually, breast feeding/pumping. At this point, I'm supposed to produce 500-1000 ml of milk per day. The first two weeks I barely got to 300 ml so I was given a script for Domperidone and started Fenugreek. I've been on them for a week and it seems my milk has decreased to under 200 ml/day. Frustration doesn't begin to describe it. Nurses keep telling me it's because we are in the NICU and it's stressful. So let's home things pick up when I get home. So in the meantime, he gets whatever I can produce supplemented by Similac formula. But he's been gaining weight (up to 5.459lbs) so I'll keep trying.

Physical Therapy thinks he has great movement. They said his feet are turned in (not clubbed) because he's so tiny and the outside muscles aren't strong enough yet. But PT examined him yesterday and said his feet look a lot better already and think he'll be fine. We will contact Early Intervention when we get home to set up a physical therapy plan and make sure we stay proactive in his development.

So he'll be going home on a monitor since he's still on caffeine and is taking amoxicillin, Vitamin D and Zantac. He had an apnea test that showed he has reflux so Zantac should help him with that. Next step is getting him acquainted with our crazy dogs and setting up his room. The anticipation is killing us but I can see the light at the end of this long crazy tunnel.

The Birth

So after a couple "just to be safe" trips to the docs and a good 34 week checkup, we figured Brent was cooking safely. We hit the 34 week mark Friday, 3/9/12. The next morning we were awoken at 8:30 am to a fire drill at the Nugget House. At first, it was pretty annoying since we were used to sleeping til noon, but later we realized it was a sign from God because as it turns out, my water had broken when I was sleeping.  Off to the hospital we went.

After an exam, the doc told us he was going to keep me overnight for observation. Within a half hour, they were back in to let me know they didn't want to wait and risk infection. In went the IV (took 4 tries and I nearly passed out) and out I went to the OR. This time, the epidural only took one try (after again almost passing out). Brian was able to be in the room for the whole c-section and I did my best to not freak out or pass out (both were not successful). About 2 hours later I was done and  Brent was whisked away to another room where Brian cut the cord. They brought him out to me and I got a quick glance and off he went again.

Brent Alexander was born 1:02 pm 3/10/12. 4.4 lbs (exactly 2 kg) and 18 inches long.
Due to the anesthesia, I wasn't able to make it down to see him until about 2:00 am. As soon as I made it downstairs, of course, my IV literally fell out of my hand. But after another trip upstairs and a new IV, I finally held my little man. He had a CPap for oxygen and more tubes than I did. He was so tiny-like holding a bag of sugar. I could hardly see his face and, at that point, it felt like I was holding someone else's baby. Kinda weird to think he was actually mine. I had just gotten used to being pregnant and now I have a teeny tiny baby.

Over the next 3 days while I was recovering, Brian made trips to see him almost hourly. Recovery was way easier than the first surgery. I was out of bed in a day walking to the bathroom and even showering. The pain wasn't as bad and they were able to use my first scar for the c-section.

Over the next week Brent made huge progress. His CPap was removed, off all fluids & IV and trying his hand at bottle feeding. He still was working on his breathing technique and was put on the nose cannula-but was down to just "air flow" in a few days.  The first brain scan showed his ventricles increased a little but nothing that overly concerned them. His second scan was also stable. His head was normal size, his legs were kicking and he was coordinated enough to try to pull off the cannula with both hands. Every trip to see him resulting in positive results and a day closer to going home. He even started to latch for breast feeding and moved up to 40 ml of feeding (the max) by day 7.

He's pretty content in his little heated bed and barely cries. Aftet his CPap was removed we finally got to see those gorgeous blue eyes. He had to "tan" twice under the lights because his bilirubin was low. But as of now, his heartrate is steady and he's looking awesome.

Our little miracle is proving that he is just that-a miracle.

Brent's Here

2nd Post to follow but just wanted to update everyone. Brent Alexander Troichuk was born Saturday 3/10/12 at 1:02pm. He was 4.8lbs, 18 inches long. It's day 4 and he's doing awesome. I've been discharged after the C-Section and feel great (cake walk compared to the other surgery). I'll be sure to update and let you know the specifics as soon as I can peel myself away from him :)

Birthday Boy

Day 4

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.