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!
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| 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.
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| Andrew got to go back with Blaise until he was fully "asleep". |
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| After his internal check |
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| 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.
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| 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.
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| They love their little brother...we are SO blessed! |
