Bladder Exstrophy *Part 1*

Ok so here it is, the post you've all been waiting for...just kidding. I've hesitated writing this because 1. Haven't really had a chance to sit down and put all of this into words (been a little busy) and

2. I'm having a hard time knowing how/what to say about Blaise's diagnosis.

But I'm just going to go for it so hopefully it all makes sense.

 

No, we had no idea Blaise had bladder exstrophy before he was born. We've been told that it is hard to find on ultrasound even if you are looking for it and we had absolutely no reason to look for it, let alone ever even heard of such a thing.
Like I mentioned in my previous post about Blaise's birth, after I had some time to hold him skin to skin he was taken away to the NICU, just as a precaution. It's so rare that the nurses hadn't ever seen such a thing so they just wanted to cover all their bases by putting him in the NICU. We were told he'd have to have surgery and soon after the surgeon at that hospital called to talk to Andrew. The surgeon said he had done this type of surgery 10 years ago and would never do it again. So he recommended we go to Johns Hopkins in Baltimore because Dr. Gearhart is the best in the country for this diagnosis. Since then we've been told that he may be the best in the world. Dr Gearhart told us himself that half his cases are repairing patients who had their initial closure (name of surgery of putting the bladder back into the body and setting the pelvic bones) by other surgeons and had failed. We feel so blessed to have been sent to him right from the beginning. Which brings me to another point...you know how God takes care of you even when you don't realize it or have any idea he's doing so? Well that sure is the case for us! It's pretty crazy that we are living on the east coast, I'm still not used to it. But God has placed us here at no better of a time; we're only 3 hrs from Johns Hopkins! Also, Andrews position at work right now couldn't have been better for this situation....he's working in the design element of this job which means he has a desk job, so he was still able to work even from Baltimore. His last job had him managing a crew working on the bridge...if that was the case here, he would have had to take PTO the whole time or gone back to NJ to put time in at work, instead of doing some work remotely. We were also so blessed to have both of our parents (Grandma and Grandpa to the kids) help with the kids from the day we delivered to the last day in Baltimore...it would have been impossible to do all this without someone helping with the kids. And the last blessing, besides the fact that Blaise's surgery went well and recovered smoothly, is that Andrew was able to find us a new home and get almost all our belongings moved before Blaise was discharged from the hospital. Yes, a couple of days before surgery we found out our landlord wanted to move back into her house once our lease was up...I tell people that with God's grace and Andrew's determination it all worked out and we were able to spend Christmas in our new home!

Now, back to Blaise. He was born at 4:05am. By 10:30ish we had our parish priest come to the hospital and baptize Blaise.

Then around 3pm Blaise left in the ambulance for Baltimore. We were not allowed to go with him, I was fine with that at first. I'm a rule follower so if that's how it had to be then that's how it had to be...but once Andrew and I were about half way to Baltimore we both had a sad realization...our newborn was with complete strangers and we just wanted to get to him ASAP!

About to leave for Baltimore

We texted one of the paramedics and he said Blaise was doing great and had been sleeping the entire time. With traffic and stops to help Andrew stay awake, he'd been awake since 3am and I was no help driving, remember I had just delivered about 13 hrs earlier, we arrived a couple hrs after Blaise did around 8:30pm. One of the Urologists met with us right away and explained all that bladder exstrophy involves. It was at this point that we realized this was no little surgery and bladder exstrophy is something Blaise will most likely have to deal with his whole life. I was quite emotional at this point but still so glad that it was not life threatening. We went to bed around 10:30-11pm in a tiny little room IN the hospital that they provided on the NICU floor. I got up about every 3 hrs or whenever the nurse called to say Blaise was awake and hungry, to breastfeed, he nursed like a champ.
The next day, Thursday, we hung out in Blaise's room waiting to talk to Dr. Gearhart, it was almost like waiting for a celebrity. I was expecting an intelligent, arrogant old man but Dr. Gearhart was very down to earth, of course intelligent but also has quite the sense of humor. He sat down next to Andrew, leaned back, put his hands behind his head and started to explain more about Blaise's condition (he calls it disease but I like using the word condition). It was also nice to hear that nothing that I did during the pregnancy caused his bladder to develop this way and there is nothing we could have done to prevent it, I'm sure some of you were wondering that, as was I. He also explained that it happens about the 6th week of pregnancy. We learned a lot in that conversation, more than I really needed to know. I had no desire thinking about Blaise's sex life once he's older but that was brought up as well. All in all we learned that Blaise will be a completely functioning adult and if all goes well he may even get to the point later in life to be able to void just like you and me. But that would be after he has the 1st surgery; to place his bladder back inside his body and set his pelvic bones. Then 2nd surgery in about 10 months to fix his urethra, which does not run to the tip of his penis. And then 3rd surgery once he's 7 or 8 (completely depends on the child) to stretch the neck of the bladder to help the bladder hold urine and teach Blaise the sensation of "needing to go potty". I still don't know all the details of the 2nd and 3rd surgery but that's what we understand at this time. I've heard stories of grown men that you would have never guessed were born with bladder exstrophy cause they urinate completely normal now. If the bladder has developed good enough in utero, transitions well to the inside of the body and grows properly after that, there's a good chance of voiding just like anyone else. From the first time we saw Dr. Gearhart he's made comments on the "great' bladder that Blaise has. Of course as parents we hope for the best for our precious boy and are praying it be God's will for Blaise to someday forget that he was even born with this condition and be able to go to the bathroom just like anyone else. Thursday finished with talking to social workers, getting on a waiting list for hospital housing and so on and so forth but also spending time with Blaise and wishing for some rest of our own. Then early Friday morning Blaise went under anesthesia so the drs could do an internal check. Some things they were checking were whether or not the bladder would fit, they literally pushed it back into his body. They looked at his pelvic bones to see if they'd need to do any cutting to set them back into place and looked to make sure other organs and such were where they should be. Everything looked as it should and from what Dr Gearhart and his posse could tell surgery should be very smooth and straightforward.

Andrew got to go back with Blaise until he was fully "asleep".

After his internal check

 

First time wearing clothes...oh he's SO cute!

We were told later that day that surgery would be Nov 6th and that we were going to be discharged the next day to go home. Home?!?! We thought we had heard wrong...but were thrilled to learn that, yes, we were actually going to be able to go home and relax a little bit. The kids were at home with my parents and you have no idea how much we wanted to see them. One thing I had been struggling with during Blaise's pregnancy was patience with the kids and feeling like I never had any time for myself. Well being away from the kids for 2 full days was killing me. I teared up more thinking about them at home (even though I wasn't at all concerned for their well being, I just missed them!) then I did through all this time in the hospital with Blaise. Anyway, Saturday morning about 10ish we headed home. And let me tell you, those 10 days at home were SO nice. My mom was able to stay to help out and I'm so thankful cause I was absolutely exhausted. But it was nice to be in the comfort of our own home like normal people. It was also really good for me to have some bonding time with Blaise before surgery. Since that first night nursing wasn't going so well so I proceeded to pump and feed thru a bottle since he wasn't going to be able to nurse after surgery anyway.

Kids loved him from the moment we got home...they were constantly giving kisses.

For those of you wondering how to take care of a baby with an exposed bladder....it's pretty darn easy and "non-medical". All we had to do was keep it moist with sterilized saline solution and place a piece of saran-wrap over the top of it before putting a diaper on. We put two diapers because pee leaked everywhere and extra protection was needed. And lastely we had to change his diaper more often (as if newborns dont need their diapers changed often enough already) because he kept getting a really bad diaper rash. But frequent changes cleared that right up.

This is much longer than I had anticipated so I'll break it up and write another post telling about surgery and recovery.

They love their little brother...we are SO blessed!

One and Two Months Old

Here's our cutie patootie...2 months old already, well as of writing this he's 2.5 months old. It's so fun seeing him interact with Malachi and Anneliese, he sure likes having people around. Even when I place him under a play mat with hanging toys he's always looking for the kids or Andrew or myself. I don't blame him though....I've never layed in a bed for longer than I've been alive, lol.

I'm still planning on updating you all on Blaise's condition, surgery and recovery...hopefully soon. But last Friday he had an ultrasound to make sure everything was draining correctly and all looked good!

He sure is our little champ!

 

The last week or so Blaise found the monitor above his bed and sure loved watching his heartbeat pulsing across the screen.

 

(Mommy can find the right size baby clothes...so yes he's wearing huge baggy pants...the joys of moving)

 

You can be sure big brother and sis wanted to get in on the action...Blaise didn't like sharing the lime-light....

 

Blaise Emmanuel

18 days ago we welcomed Blaise Emmanuel Schaal into the world at 4:05am on Oct 21, 2015. He was quick to arrive but rather smooth compared to Anneliese's birth. As you all know (I'm sure the only people who follow my blog are either family members or instagram followers) we were quite anxious for this little ones arrival...seeing as he made us wait a week past his due date. Andrew's parents had already come and gone and my parents were going to be leaving Saturday. I was worried we weren't going to give birth and then not have family here to watch the kids.


We went for a walk after my last prenatal appointment

However, at our last prenatal appointment which was on Tuesday, our midwife stripped my membranes which lead to some cramping around dinner time and started some contractions around 8pm. They weren't hard contractions but definitely consistent so I started timing them and they were 4 minutes apart for 2 hrs. We didn't do anything about them cause I could talk and walk thru them....they weren't getting harder or anything like that so we went to bed. At which point they slowed down and I got about 45 minutes of sleep...could have been more however Malachi AND Anneliese didn't sleep too good the first part of the night. Up until about 12:30 Anneliese was in our bed with us because she wouldn't sleep. She NEVER comes in the bed with us so she just thought it was play time and thought it was fun to kick around the bed the whole time...until I had had enough and told Andrew to take her to her room. At this point my contractions started up again and these were the real deal. Unlike Anneliese's birth when the contractions started really intense and progressed quickly, these started slower but harder than the contractions earlier in the night and progressed at a slower rate. So I told myself it wasn't going to be a quick labor and delivery...I felt blessed to ease into the painful contractions and felt I could keep my cool a lot better than last time. I stayed awake and proceeded to "snapchat" my sisters, since they are on west coast time and still up. Once the contractions got closer and harder, I woke Andrew up (who was sleeping in the kids room...remember I had sent him away with Anneliese? Well she was sleeping soundly by now, thank goodness) and we called the midwife; she was at a different hospital with a patient and told us to call back when we felt it was time to head to the hospital where we were going to deliver. After getting off the phone I decided I wanted to wait a while longer and labor at home instead of getting to the hospital too early. By now the contractions had been 4 minutes apart for 2 or 2.5 hrs and lasting 45 seconds. About a half hour later I felt it was time to head to the hospital.


Snapchat picture I sent to my sisters, right before leaving

The drive there was actually really smooth, It's never fun laboring in the car but the 15 minute drive wasn't as bad as I thought it was going to be. Of course walking up to the maternity unit is never one of my favorite things to do while laboring but at least it was in the middle of the night so there were not many people and we made it just fine. I had to sign/date/time some papers at the front desk, so I remember exactly what time that was: 3:40am. We got to our room, I gave a urine sample (dumbest thing in the world to ask a laboring woman but I managed to successfully give them what they wanted although challenging). I felt nauseous at this point and dry heaved a couple of times (sorry if I'm giving too many details) and got back into the bed in our room. Soon after my midwife showed up and my water broke. Contractions were getting to the point where it was pretty hard to breathe through them. Then I felt like pushing...our midwife checked me and I was 9cm. She said if I felt like pushing to go ahead and do so. I was confused because I had been so used to the dr's in my previous births telling me exactly what to do but the midwife was just letting me do whatever I wanted. I asked how I could push if I wasn't fully dilated and she responded with, "this is your third baby, you will push yourself to full dilation!"  I went a couple of contractions without pushing because I just didn't feel ready for some reason. But then felt the dreaded stretching "down there" which meant it was time to push. With the next contraction we delivered the head and then the contraction after that the shoulders and rest of the body, exactly 25 minutes after signing the papers at the front desk.

The midwife put the baby on my chest and told Andrew to check to see if we had a boy or girl. He looked and said he thought it was a boy with some uncertainty. The midwife made a comment about there being some sort of "mass" which I saw down by our little baby's "privates" but she didn't seem too concerned so I continued to hold our little Blaise Emmanuel (the name we had picked out since Anneliese's pregnancy). However, shortly after, the nurses had called in the pediatrician to take a look at the mass. She looked him over said that he was a completely healthy baby but didn't know exactly what the mass was...at some point they determined it was his bladder and he had what is called Bladder Exstrophy. They took him to NICU, with Andrew close by. It was weird to be in the delivery room without my husband and/or baby but I very much enjoyed my midwives company as she cleaned me up. Protocol says after 2 hrs mom can leave the delivery room...however my sweet nurse said I could go to the NICU after 1 hr. That hour went by quick and I soon made it to the NICU to see our adorable son. Normally you'd think it'd be terrifying to see your newborn baby in the NICU but it wasn't that scary. I mean he was a completely healthy baby, breathing on his own...everything was working, he just had an exposed bladder.

 

 

 

 

Add another almost 9 lb baby to our repertoire! Can you believe all of my children
have been just about the exact same size??

I know you probably want to know more details about his condition and surgery but this post is dedicated just for Blaise's arrival.

 

Again I have to give all the credit to my amazing husband, and St. Gerard who is the patron saint of expecting mothers and unborn children who I prayed a novena for a safe and smooth delivery.

 

Blaise Emmanuel Schaal

8lbs 14 oz, 21inches

 

 



The Waiting Game

So we've started the waiting game....Our due date is tomorrow and for the past week I've had people wondering when our little one will arrive. Mentally I was a bit mixed up because my mother in law got here last Monday so I was "ready" to give birth. But it wasn't even the week of my due date yet...and this baby seems to think he or she will follow suite with his or her siblings and show up past due date (unless he/she shows up tonight?!?). But at least the little one is healthy.

I got checked today by one of the midwives and I'm 2 cm dilated and 50% effaced. But that doesn't necessarily mean anything...if I remember correctly I was 2-3 inches dilated for a week or more with Malachi and I didn't give birth for 4 days after being dilated 2-3 AND having my membranes stripped with Anneliese. But we're all praying this baby will show up a bit earlier than the past two deliveries.

Any other prayers would be greatly appreciated. Honestly I'm more nervous for this birth than I was for the last two. For Malachi's birth I didn't really know what to expect, but felt ready due to taking the Bradley Method birthing class and most importantly I felt spiritually prepared as I prayed for that delivery every day all day it seemed. Then for Anneliese's birth...I half-heartily did our breathing practices from the class and prayed but not as persistently as Malachi's but I wasn't really nervous for it. Well her birth started off so incredibly intense I really didn't think I was going to be able to handle it all...however the entire labor and delivery was only 3.5 hrs so that was a blessing. But it left me with little confidence for this birth because I truly didn't feel like I was going to be able to handle the contractions...I felt panicked but was blessed with a short delivery. I can't help but think I'll have that same feeling of not being able to handle the contractions but the labor will go longer! I'm hoping I can "get in the zone" like I was able to with Malachi's birth. Anyway, that's where I stand right now regarding giving birth for the 3rd time.

But I'm praying to St Gerard who's feast day is Oct 16 and he is the patron of Expectant Mothers and Unborn Children.

 

One day short of 40 weeks

 

Meanwhile, the kids are LOVING having Andrew's parents here to play with them. Here are a couple of pictures that Andrew's dad took of the kids playing in the leaves.

 

 

Also, Guack Guack and Malachi made an apple pie from the apple trees in our yard!

 



4 Years

Almost 2 weeks already we celebrated our 4th Wedding Anniversary. Like always I can't believe how fast time is flying by and that Andrew and I have been married 4 years already!

A couple of days before, I had logged onto our Verizon account and was looking at the points we have accumulated....we had looked at them before but couldn't figure out how to use them without spending money. What we saw before was if you use a certain number of points then you can purchase gift cards or merchandise at a reduced rate, cause your points give you a percentage off. We wanted to get something totally free with our points but didn't see an option....however the other day I figured it out. They have "points only" auctions, so I started bidding on restaurant.com gift cards with our points to see if I could win one to use on our anniversary, instead of spending money that we'd rather put towards debt. I bid on about 6-8 different auctions throughout the day but got outbid last second every time. Until about 6:30, right as Andrew pulled up in the driveway I WON an auction for a $50 giftcard to restaurants.com! Needless to say I was SO excited and yelled at Andrew to get up into the house quickly. Well here we are 2 weeks later and still haven't received the giftcard...it's a good thing we didn't put off our anniversary dinner for it to arrive! We ended up going to The Stirling Hotel (not actually a hotel, just a restaurant and bar). We had been wanting to go with the kids cause they have chickens and a little play area for them...and Andrew had gone when I was out of town and really liked the food. The food was VERY delicious....Andrew and I both got burgers (I know, just burgers you say?) but they were really really good. I would get the same thing in a heartbeat. The kids split an adult half portion of Mac n Cheese which was devoured by all of us...it had garlic, was super creamy and there were breadcrumbs on top. I told Andrew I could see myself wanting a "take out order" of the mac n cheese after baby is born on a day when I can't get around to making a decent meal. He said "hint taken" =)

 

 

Anyway, it was a delicious meal...and of course I love having an excuse to make a dessert so I made no-bakes. With the intention of Andrew taking some to work so I wouldn't eat them all but they didn't set too well. I gave a couple to a friend but you can be sure I ate every last one of them (not all on one day though). We also pulled out our wedding glasses and drank a bottle of sparkling cider. Nothing too crazy for this anniversary but was still a very delightful evening.

 

Then the following day, Kiewit (Andrews company) was having a get together at Pier 13 in Hoboken so we had a chance to take our yearly picture with our chalkboard...with the lights of Manhattan behind us. Yes, that's the Empire State Building.

It turned out WAY better than I thought it would (Andrew proved me wrong), I really like it!

Never would I have thought we'd be living on the East Coast and I still find myself in shock that we live a half hour away from New York City. These last 4 years have been quite the adventure but at least I have the man of my dreams, my best friend and now 2, soon to be 3, new best buddies to share in all of these adventures. We are so truly blessed.

 

 

 



Baptism Day & Potty Training

August 22 was Anneliese's baptism day. We celebrated with home made cinnamon rolls and went to play at the water park (just a park with water features not an actual water park).

 

Also, during one of our stops on our drive home from Michigan we let Malachi pick out some new underwear and we've started to potty train!

 

This was after his first time ever going on the potty...we have a cute video of him saying "no more diapers for 'chi!" but videos never work on here so I'm not even going to try.

His treats after going potty...yes those are jelly beans from Easter but at least it was an unopened fresh bag and he loves them! Oh and it's super cute he even shares his treats with Anneliese!

This was after what seemed like hours...probably realistically a little over one hour, of waiting for him to poop. He finally did it. Anneliese has been quite the cute cheerleader for her big brother thru all of this!

 

I remember my mother in law telling me that potty training hadn't been that big of a deal for my sister in laws. I had been skeptical this entire time leading up to it with Malachi but I have to admit it really hasn't been that bad...(besides last Tuesday but EVERYTHING was going badly that day). He has gone by himself without any of us helping or even knowing that he needed to go. AND he's even gone on big potty's in dr offices and gone a couple of times in a porta potty! Good Job Malachi!

Michigan Trip

The kids and I were able to take a trip up to Michigan for a couple of weeks starting at the end of July. Andrew was only able to join us for the last weekend as he had some work and Army obligations so Auntie Jen flew out to NJ and drove with the kids and I up to Michigan. We of course had to stop by Carlos Bakery and see the Statue of Liberty the morning she flew in.

Road Trip! Kids did great!

 So, the original reason we went up to Michigan was because the Dominican Sisters of Mary, Mother of the Eucharist were having their First Profession Mass and Ceremony which is open to the public. Sr Jamie didn't make her first vows yet (2 more years) BUT the night before, in a private ceremony she received her white habit and her new name...which is Sr Cora Rose. SO beautiful: the name and habit. Sr. Cora Rose was her first pick but it the Mother Superior with the Holy Spirits guidance that makes the final decision, and she got her first pick! Sr. Jamie has always had a devotion to Saint Rose of Lima so that's where Rose comes from and Cora means "Heart" in a different language (I don't remember which one, latin or greek or something). She liked Cora because it reminded her of Jesus's Sacred Heart....and from a letter she had written us a couple of months ago "It is because of the love and mercy from His Heart that I was healed from my past sins and felt all His love for me. The soldier pierced His side so that us sinners could have access to His Heart. Even if I don't do anything extremely spectacular in this life, I at least want people to remember me as my living and loving with a heart like Christ"

It was such a blessing to see her and for the amount of time that we did! I thought we'd be able to see her for like a half hour but we got to spend a couple of hours with her and she gave us a tour of the Motherhouse!

After the ceremony we all headed up to my dad's cottage on a small lake called Lost Lake in northern Michigan (parents were with us too). We celebrated my moms birthday with lots of dancing and a big delicious chocolate cake!

Malachi's first motorboat ride

Dancing it up for Grammy's bday

 

Anneliese started walking just about 100% of the time while at the lake.

My mom and I took this exact picture in 1989, my mom was pregnant with Robin and I was 2 years old!

Malachi caught his first fish!

Who knew acorns could be SO entertaining? The kids played with them the entire time.

 The house on Lost Lake has been in my Dad's family for 46 years I hadn't been there for over 10. We look forward to going back next summer when Andrew can join us!

 Andrew was able to fly to Detroit after his 10 day military commitment in Oregon and attend my cousins wedding with us. He even flew in a day early and surprised us!

Anneliese was a dancing maniac!

Malachi was Mr. Cool

And mommy loved that the kids could play in the "Gardens"

The next day we drove home, this was after we attended Mass in Toledo and received a marriage blessing since our anniversary is in August!

Construction added an extra 4-5 hrs to our trip...Andrew had to do something to keep himself and Malachi occupied as we sat motionless. His "stereo headband" was from a kids meal at Wendys.

As much as I enjoyed seeing family and spending time at the lake, I was very appreciative to see my husband again and be in our own home. No more big trips for us this summer and I am happy to stay in one place for a while!