Jett's Final Surgery

On January 23, Jett had his third and, hopefully, final surgery.  A year ago, when he was born, we knew that surgeries were in his future.  The doctors were very surprised that he didn't have one within days of birth, so we know that we have been lucky.  His first surgery was January of 2014 and it pretty much cut a hole in his ureterocele in his bladder (think of it as a balloon that kept filling up and periodically releasing urine).  The next, in June of 2014, was to prepare his right testicle for descent (a blood vessel grew too short and was holding it up in his abdomen).
Well, this was the big one that we have been waiting for.  Essentially, it did three things:
1. Brought the right testicle down to his scrotum (held in place with a suture)
2. Finished taking out the ureterocele and repaired the lack of muscle underneath it.  The ureterocele was taking up about 1/2 of the floor of his bladder, which means that none of that had muscle underneath it, so muscle had to be pulled and stretched and who knows what to cover the area.
3. The reflux had to be corrected by moving around his 4 ureters (the tubes that connect the kidneys to the bladder).  Most people have 2, but lucky Jett has 4 and all of them needed some correction.  Two of them were really thick where they emptied into the ureterocele, so they were also shortened as well as moved to an area with a thicker muscle belly.

The day itself was long.  The surgery had a nearly 2 hour delay, then ended up being about 6 hours long.  We were fortunate enough to get calls into the OR every hour and a half to two hours, so we had some idea of what was going on.  Chris also got to go back and hold Jett while they put him to sleep, which he said he probably wouldn't choose again.  It was hard to even hear him talk about it.  Because of Jett's previous problems with IVs, (like 9+ tries to get one in), they brought in a special team that only had to stick him once or twice.

Around 7 p.m., Dr. Lee came out to meet with us.  He said that everything went smoothly, it just took a lot longer because everything was a bit more extensive.  He found and was able to pull Jett's right testicle down, but it was REALLY far up there, so it took a little more coaxing.  Then, the ureterocele was a LOT bigger than previously thought, so it took a lot more work to move the muscle tissue around.  Things like that.  I am so grateful to have Dr. Lee, though.  Since the beginning, when I was just meeting with him in the Advanced Fetal Care Center, I trusted him and knew that Heavenly Father had been preparing him to work with a lot of kids, but my kid, too.

Another half hour later, we finally got to see Jett in the PACU--the recovery room where they hold him for an hour or two after surgery to make sure he is stable enough to send up to a regular hospital room.  The poor boy had tubes coming out of everywhere.  He had the O2, HR, and RR monitors on his chest.  He had a suprapubic catheter coming out just below his belly button (a more intensive surgery calls for this kind of catheter because they know it is going to be in for a while and will disturb him less than a tube coming out of his penis), and 2 tiny tubes coming out just to the right of the catheter.  These were stents leading directly out of the two ureters that had the most work done on him.

Jett was sleeping peacefully.  Unfortunately, it was getting to be 8:30 p.m. and one of us needed to go get Link from the babysitter's and take him home.  Everyone predicted that it was going to be a rough night and since I was 32 weeks pregnant at the time, it was strongly suggested that I go home and get some solid sleep.  Silly people.  It was Jett's best night and I knew it would be.  I regretted going home and leaving my baby for the first time.  I was glad to pick up Link at my friend's house, though.  He skipped his nap and by 8 p.m., he was so tired, that he asked for a blanket and pillow and went to sleep in the corner!  Cute boy.

Jett stayed in the hospital for 5 days.  He was on valium for the first day or two, which is a total body muscle relaxant, so he was pretty chill with sitting in our arms or playing with toys, reclined in his bed.  Once he came off of that, he wanted to move around a bit more.  Unfortunately, the playroom was only open for 1 day (closed on weekends and during the blizzard), but we had nurses keep switching out the toys and we went for a million walks.  He really wanted to walk by himself, but a new walker who just underwent surgery is not the most stable of people.

His surgery was on Friday, and he got the 2 stents out on Monday, so it was a lot more manageable to follow him around with one bag instead of 3.  We were also able to wean him down from IV fluids in the middle of the night on Sunday, so we kept flushing the IV and weren't connected anymore.

We did have a couple of mishaps.  On the second night, Jett started shaking and trembling all over his body and did this for a half hour.  They thought he might be cold (fools), but a half hour later, he spiked a fever and they finally sent off for some tests.  They started antibiotics to combat a possible infection and within the hour, Jett broke out with red and white blotches on his arms and face -- an allergic reaction.  To counter that, he was given Benadryl, which did not make him sleepy--it made him crazy.  That was one long night.  The next night, he was given a different antibiotic, which he also had an allergic reaction to and was again treated with Benadryl.  Again, he was crazy, so our sweet nurse snuck another cot in our room and Chris had Jett sleep on his chest and I didn't have to sleep on the floor again.

Jett, watching the blizzard from our 10th floor window

After 5 days, we got to come home.  Link kept holding Jett's hand and following him around, giving him hugs and kisses.  "Baberton DOES like us.  He came home!"  We were able to get a leg bag for Jett's catheter, so we didn't have to follow him around all of the time, which was nice.

The next 4 weeks were long and hard.  Jett's catheter came out 2 weeks after we came home, which was great because trying to switch it to the big bag at night and emptying it all of the time was a huge hassle.  Plus, as he got more active, he started to snag it on things.  Then it took another couple of weeks to learn to sleep through the night again.  When the catheter was in, he was getting really painful bladder spasms, especially throughout the night.  The first few nights, Chris and I took shifts, but Chris is a sweetheart and took pity on my large, pregnant body and then wouldn't let me help unless it was really desperate.  The night the catheter came out was the worst night at home, by far.  Jett was having all of this phantom pain and cried for probably 2 hours at the top of his lungs.  Nothing could calm him down.  Finally, we gave him Ditropan for the bladder pain and Tylenol for the incision pain.  After a half hour, the drugs finally started to work, and Jett began to relax.  I was lucky enough to be holding him at the time he fell asleep and I just laid him down on the mattress next to me and slept there until I really had to pee.  Poor little guy.

The catheter and the bandage covering his largest incision

From the surgery, Jett got 4 additional scars/incisions.  One huge 4-inch one right by his diaper line, one small incision and one small suture on his scrotum, one V-shaped incision from his catheter, and 1 small incision for his stents.

Now that Jett has finally recovered and is completely back to himself, I am so glad that we did this before the baby came.  It was the longest 5 weeks of my life.  I thought he would bounce back a day or two after we got out of the hospital and was not expecting the recovery to take so long.  But, I am so glad that it is done now.  I am so grateful for all of the friends who helped out and for my mom who flew out to watch Link on such short notice.  But mostly, I am grateful to my amazing husband.  He held a screaming, crying child with more patience than I could muster and, once again, took on the lion's share of terrible nights so that I could sleep without even complaining.  I am so dang lucky to have this man by my side as we go through the trials of life.

Jett's Third Surgery

Jett has his third surgery scheduled for Friday, January 23rd.  This is the big one, the one that we have been "putting off" until he gets bigger.  And now that time has come.  We got as close to a "clean bill of health" as we could in November from nephrology.  His kidneys have been functioning so close to normal since he was born that we get to space our appointments out every 6 months.  However, we got different news in December when we went to visit urology.  Jett had a ultrasound and VCUG done that showed that he still has significant reflux back into his kidneys.  A lot of people have reflux and it isn't a big deal.  However, because his kidneys are already damaged, he is at increased risk of scarring and permanent damage if he should ever have a UTI infection that get refluxed back up to his kidneys.  This surgery will essentially repair the reflux.  There is also a hole or gap in his bladder muscle from his first surgery when his utererocele was removed a year ago.  Dr. Lee will also correct that.  Finally, he will also get the second half of the teste descent surgery at this point.  In June, the blood vessel to his right teste was cut (the testicle is currently sitting in his abdomen) and Dr. Lee is hoping to bring it down into place.  To sum it up, Jett will have one large incision over his bladder (diaper line), several for tools and scoping, and one in his scrotum.  He will be in a significant amount of pain.  If everything goes well, he should be in the hospital for 4-5 days.

We are grateful that Dr. Lee is able to combine two potential surgeries into one.  Originally, he was thinking about doing the teste surgery first then waiting at least 6 weeks before doing the big surgery.  However, since I am due in March (yes, I'm pregnant), and I expressed my desire to be in the hospital with him (which I clearly couldn't do with a newborn), he thought about it and decided that he would be able to combine the two surgeries.  That was blessing number one.  Number two is that my sister is able to come out and help watch Lincoln so that Chris and I can both be at the hospital.  As soon as she found out that I was pregnant with Jett and that he would have medical problems, she offered to come out and help with Lincoln.  Neither of the other surgeries were lengthy, so friends out here were able to watch Link.  This one is quite a bit more intensive and I am so grateful that she has been open to whenever it would happen.  I am also grateful to her husband and those who are helping to watch her children so that she could come watch mine.

As we head into this final surgery, you would think that I am prepared.  I have done this before.  But really, I am a complete mess--a hyperventilate in the dark kind of mess.  Every time we have a doctor's appointment, I break down because I have to face the fact that my child is not a healthy child; despite his cheerful demeanor, he still has a chronic disease.  However, surgery is different.  They carry your child away from you, put him to sleep, and all I can do is wait to hear his screams and count how many times they tried for an IV before they finally got one.  Last time was 8 tries.  Now that he is a little older and is starting to get some separation anxiety, they will let one parent go back to watch and be with him while he goes under.  I was so glad to hear that until they said it would have to be Chris because I am pregnant.  This is the first time that pregnancy has gotten in the way of me being able to comfort my baby.  But at least Chris will be there for him.  I don't know how I will make it to the waiting room by myself, but I am so glad that Chris will get to be there for a short time with Jett Jett.

This is going to sound a little pretentious and ridiculous, but I have received many answers and blessings that said that Jett Jett was made specifically for me.  I got my blond haired, green/hazel eyed baby.  He loves hugs and kisses and me, in general.  He is quick to giggle.  Everything about him (minus those inevitable grumpy nights) makes me so happy.  I'm not saying that I don't love Lincoln or get along with him, but you know when someone was just made for you?  It makes it that much harder that I can't take his pains away.  I would do anything to be on that operating table on Friday, but all I can do is just walk away.  I can't even go back with him, and that breaks my heart.

As always, if this finds any of you, I ask you to pray for our family this week.  For Dr. Lee, the surgeon, that his mind will be clear and his hand guided during the surgery; for Jett, that his body will respond well to the surgery and he will be able to handle the pain and heal well; for Chris and me, that we will be able to take care of our sweet boy and know what he needs from us; and for Lincoln, that he will not be so anxious and scared while his parents are away but that he will find comfort at home. 

The Emergency Room

One of the scariest parts of having a child with kidney disease is fevers.  They scare the crap out of me.  With Lincoln, the first few fevers were really terrifying, but once I figured out that fevers are not so bad as long as he is drinking and playing, I wasn't so scared.  But with Jett, fevers send me into hysterics.  Although Jett's kidneys are functioning as well as they possibly could be right now, there really is no indication when they will take a turn for the worse.  A fever will be our only indicator.  So, with every fever, every raised temperature, I break into hysterics.  Is this one the one?  Are his kidneys still functioning?  Will this be the last time I snuggle my baby?

I think Chris thinks I am being a bit extreme in my thinking and I know that I can overdo it at times, but really, what thoughts would run through your head?  Any time, EVERY time that Jett runs a fever, we have to follow the same protocol.  We have to have his urine and blood tested.  Simple enough, right?  We were given urine bags and alcohol wipes for a clean catch so we always have his urine ready when we get to the doctor's office.  However, getting his blood drawn is another matter.  Only certain labs will accept babies as patients and none of those labs are open outside of weekday hours.  And our babies always get sick on weekends.  Always.  The only solution is to take Jett in to the emergency room. 

Take this weekend.  Friday night (around 7:00 p.m.), Jett is running a fever of 102.7.  We remember the last awful night trip to the ER for a blood draw and decide to give him a good night's rest before calling it in.  Chris and a friend give him a priesthood blessing, we pumped him full of milk and let him sleep for the night.  At 11:30 a.m. on Saturday, his fever was still 102.8, so we call our pediatrician's office and the renal fellow on call at Children's Hospital.  The nurse practitioner on call insists that we only need a urine sample and not a blood draw (even though I assured her we would) and sets up an appointment for us at 4:30 p.m.

After waiting with my toasty hot son for 5 hours, she checks him over and tests his urine sample that we collected just prior to coming in.  All clean.  She sends us over to the hospital for lab work.  They closed at 3 p.m. so we have to take Jett to the ER anyway.  I knew this would happen when she won't see us earlier.  I was so fuming mad, that Chris agreed to take Jett in while I stayed at home with Lincoln.

Here it is, 2:00 a.m. and I am still waiting up for Chris to bring my baby home.  He arrived right before 7 p.m. and was shuffled in right away.  However, no one can ever seem to get an IV into him so they always have to call the IV team.  Tonight it took 4 hours for them to come down.  In the end, all was clear. 

I am so frustrated with our health care system and its inefficiencies, but I am grateful that everything came back negative.  For now, we are just trying to enjoy the extra cuddles that Jett has been giving us.  It has been kind of a nice break from his usual busy self.

As far as his regular appointments go, we see our nephrologist in November.  We are hoping to possibly get rid of or lower his iron dose.  That is nasty stuff that smells bad and stains everything.  But really, it could be worse, so we aren't complaining too much.  And then we see our urologist for more intense testing (ultrasound, VCUG, etc) in December.  That will be the trip we find out more about Jett's upcoming surgery.  We are hoping to schedule it for mid-January so that my sister can come help with Lincoln.  If it is surgery to correct his reflux, he will probably be in the hospital for 4 or 5 days.  If it is just the second part of his teste descent, then it will be an outpatient procedure.  We will know more in December which surgery it will be and whether or not our surgeon thinks we can combine them.

Other than this recent fever bout, Jett is generally a healthy and happy little guy.  He loves standing up and cruising around in his walker.  He loves Lincoln and being a part of everything that he does.  We have been so blessed and so happy to have him in our family this past year.

Surgery #2

To clear some things up, I wanted to address a question that we get a lot.  A lot of very well meaning friends and family have asked us things like, "The surgery went well, so Jett's all better now?" or "After these surgeries, everything will be over, right?"  The answer to that is no.  Jett has a chronic disease.  He has renal disease (failure).  He has 7 identified diagnoses, some treatable, some not.  He has duplex kidneys (on both sides) and he has hydronephrosis, among other things.  Jett has both anatomical problems and functioning problems.  The anatomical problems can be corrected with surgery.  However, the function of his kidneys will probably never improve.  Like diabetes, his renal disease will last a lifetime.  It may not always be visible and may be regulated with medicine, but over time, the disease will show it's face.  How badly it will impact his life and when he needs a kidney transplant (because mostly like he will need it) is the great unknown.  

Right now, urology is working on the anatomical problems--such as the last surgery to incise his ureterocele (a physical obstruction) in his bladder.  Our urologist is a surgeon.  When it is time, he will go in and surgically correct Jett's reflux and when/if needed, perform the kidney transplant.  Our nephrologist is a highly trained doctor who collects blood samples to analyze how well the kidneys are functioning.  They look at bi-carbs, creatinine, vitamin D, sodium/potassium levels, red and white blood cell count, and about 40 other things that the kidneys are responsible for.  They also monitor his blood pressure which has been borderline high since birth.

In the past few weeks, we have been in to see both doctors.  From the nephrology standpoint, Jett is doing great.  They said that looking at his imaging, it is a miracle that his kidneys are performing as well as they are right now.  He is borderline in a lot of different areas, but nothing to be too concerned about.  He is being supplemented with both Vitamin D and iron (which is nasty), but a lot of regularly functioning kids are, too.  While he has diminished kidney function, he is doing well for the time being.  Our next appointment is in July.

From the urology (think anatomical standpoint), Jett is ready for his next surgery.  On top of everything else that is going on in his body, one of his testicles didn't descend.  I won't go into a lot of detail because out of everything, I still kind of feel like I might be embarrassing him, even though he is still a baby.  The doctor gave him 6 months to let it drop on its own, but now he has to go in to help him.  It is a two surgery process.  The first surgery will be June 12 and the next will be 6-9 months following that.

From my standpoint, I don't care if he has one or two testicles, but there are a couple of risks of not finding it and helping it down: 1) Decreased fertility and 2) Testicular cancer.  Better to find it now.

The surgery will involve 3 little incisions and take 45 min to 1 1/2 hours.  After Jett spends a few hours in recovery, he will be able to go home with us that day, so it will be an outpatient procedure.

I am really not excited about another surgery, but I am a little more comfortable going into this one, having done one before.  And I am really glad that Jett will be coming home with us right away.  Now that he is a little older, there is a lot less risk with the anesthesia.  And I have total confidence in our urologist.  He was trained to help babies like Jett.

Jett's First Surgery

On Wednesday, January 22, Jett underwent his first surgery.  He was 2 months and 3 days old.  The whole week before, Lincoln was really sick.  He came down with a nasty cold and high-ish fever (he peaked at 102.6).  Luckily, the bulk of his illness happened over the weekend, so Chris and I were able to quarantine Jett fairly well.

The morning of the surgery, our dear friend came over to watch Lincoln and take him back to her place for the day (he wasn't awake when we left).  We checked in with Surgery Registration and got Jett ready for the surgery.  He had to wear a tiny little hospital gown, and they gave him long yellow hospital socks.  It was all very cute.  I only had the poor camera on my phone, so here is a semblance of what he looked like.

So, in order to undergo anaesthesia, you have to have an empty stomach.  For babies, they can't nurse for 4 hours from the time of surgery.  Which means, I woke Jett up at 4:30 a.m. to feed him.  I was worried that he would wake up at 6:30 a.m., which is typical for him, and want food.  Luckily, he literally slept the entire time before surgery (even during the changing of his clothes).

Anyway, we talked to nurses, residents, doctors, anaesthesiologists, etc for about an hour before the anaesthesiologist came back.  I was cuddling with my sweet boy and she had me just hand him over.  That was the hardest part--handing my sweet little son to a complete stranger and watching her walk away with him.  It was the only time I cried.

Chris and I joined the other parents in the waiting area and we laughed for a long time.  I think we both deal with stress by trying to diffuse the tension.  It was probably completely inappropriate.

About 5 minutes after I drifted off to sleep, Chris woke me up.  It was 10 a.m. and the doctor came to talk to us.  He said that they had a hard time getting an IV in, so the procedure didn't even start until 9:25.  Then it was quick and easy.  He was able to give us a plan to move forward, too, which may have been the best part of the day.  Finally, FINALLY, we have some sort of plan.  Along with his kidney/bladder issues, one of Jett's testes hasn't descended (poor guy, huh?).  Well if it hasn't descended in the next few months, he will have to get surgery on that.  We're looking at 2 surgeries to help his teste descend as well as another one to help control the reflux occurring into his kidneys.  If the timing works, Dr. Lee may be able to combine one of the teste surgeries with the reflux correction.  Each should be spaced about 6-9 months apart.

From there, we were taken to the recovery room to meet up with our sweet boy.  From down the hall, we could hear him screaming.  I couldn't pick Lincoln's cry out of a crowd, but I know every shrill of Jett's.  They finished getting him dressed and finally allowed me to nurse him.  We spent a few hours there and were taken up to the hospital room where we would be for the night.

The next 24 hours were kind of a blur.  Jett literally slept from when we saw him at 11 a.m. until 3:00 a.m., only waking to get little meals here and there.  I was really worried that he would be up all night and since I sent Chris home to be with Lincoln, I went to bed around 8:00 pm.  We would both snooze for about an hour, Jett would let out a yell, I'd rub his head and we'd go back to sleep until the next hour.  At 3:00, he woke up to eat and was wide awake, so I spent the next 2 hours playing and talking with my sweet baby.  He would have continued to sleep solidly the next morning, but unfortunately, rounds begin at 6:00 a.m., so the poking and prodding continued.

That morning, I was able to get things moving quickly (I was a little pushy).  He got his last dose of antibiotics, so we were able to get his IV out (I made them detach the line and flush it every so often so he wasn't as hooked up and tangled the night before).  We also removed his oxygen (I ripped off his RR, HR, and O2 monitors every time I nursed or held him because we kept getting tangled up, but would reattach and reset everything when I laid him back down).  Finally, we were able to get his catheter out.  And then, we were only waiting for him to pee on his own.   He finally did and we were discharged at 12:15 pm.

It was one of the scariest experiences of my life, combined with a long and stressful night without my husband by my side (our choice - our sweet friend offered to let Lincoln sleep at her house).  But at the same time, when we got home, I could hardly remember that Jett just had surgery.  He has no external markings and was only a little fussy.  It took about a week for his sleep to start getting back to normal, but other than that, he has done really well.  I am so glad this was kind of a minor surgery.  It is preparing me for the bigger ones to come.  As we were leaving, the baby in the bed next to us got replaced by a little boy probably a few months older than Lincoln.  It broke my heart to know that Jett will be that age for the last couple surgeries.  I would rather get everything out of the way now, when he doesn't really remember it, but I know that his little body needs to grow as much as it can before then.

**On being an advocate:

In OT school, one of my teachers was probably the biggest advocate for disability rights.  She went on marches, ran from the police, that kind of thing.  We were very encouraged to be advocates for our future patients and to teach them to advocate for themselves as well.  Well, I am not an outgoing person anymore.  I stuck with a crappy doctor for myself because I didn't want to offend her by my leaving.  Anyway, that is not the case when it comes to my kids.  As I mentioned above, I am not afraid to rip useless wires out if my screaming baby needs me.  Although I am not a nurse and do not know all things medical, I think my background had provided me enough knowledge and enough confidence to ask questions and fight for my son.  For instance, the nurse wanted to keep the IV line it, even though Jett didn't need the fluid drip anymore.  She was a little surprised when I asked her to flush it and take the line out.  Same for the monitors.  I knew that I would be watching Jett carefully when he was in my arms, so she may as well teach me how to hook them back up when I was done.  I felt comfortable doing it because he had been stable the whole time.  I know my limits, too, I promise.  Anyway, for the first time in my life, I feel like I can finally fight for someone.  I am going to get Jett the best medical treatment I can and I am going to make him as comfortable as possible.  It feels good to advocate for someone.  I think I am taking it a little too far, at times, but I am learning how to moderate it.  I am sure that some nurses and receptionists tell their colleagues to watch out for me, but I am not going to apologize for inconveniencing them to help my son.

Update: Three weeks following the surgery, Jett had an ultrasound and post op visit to the doctor.  What we learned from that trip is that the surgery went well.  The ureterocele inside of his bladder is gone.  Once urine enters his bladder, it exits through his urethra, instead of pooling inside of the ureterocele.  This has also allowed the dilation in his kidneys to decrease (they are still swollen, but not nearly as much).  For all intents and purposes, the surgery was successful and did what it was supposed to do.  Jett most likely still has reflux and that will be followed up in a year or so, but at least his obstruction is gone, which is the first step.

Thoughts on the NICU Experience

Jett was in the NICU for 4 days, which is a relatively short period of time in comparison to most other babies who have to be there for weeks or months.  Jett was taken down to the NICU to start monitoring about an hour after birth (I had to wait another hour for my own recovery before I could join him).  He had the standard oxygen, heart rate, and respiratory rate monitors on him.  He was placed in an incubator--the ones where you can stick in your hands to touch your baby. 

Luckily, the doctors and nurses quickly cleared Jett for a lot of the standard things and he was taken out of the incubator and placed in a regular bed the next morning.  He looked so good compared to the rest of the babies in his nursery.  Most of them were only 3 or 4 pounds and had already been there for months.  Chris and I didn't see too many other parents.  Occasionally we would see a mom or dad come and hold their baby for an hour or so before going back home.  We were so lucky that we never had to face what those parents were facing--going home and returning to "life" while their little baby fights for his or her life in the hospital.  I feel incredibly blessed that the only time I really ever left Jett's side was to pump, use the bathroom, or sleep for a few hours at night.  I know that so many other parents had harder obstacles to face and while our experience cannot compare in many regards, it was still a difficult experience for us.

The first day in the NICU was great.  The nurse taught us how to change his diaper and get it weighed (for measuring urine output) and kind of let us take charge.  Chris and I did use the opportunity to get a few hours of rest during the day, which helped me recover quickly (I felt really good the next day).  That night, I was planning on staying with Jett for the two feedings, then switching Chris for a couple of hours and coming back in time for his next feeding.  Luckily, we had an instant connection with our night nurse and she begged us to get some sleep and let her do a feeding (with my pumped milk).  We obliged.  She called and we actually let her take the 6 a.m. feeding, too (which turned out to be a huge blessing to get another couple of hours of sleep).

Day 2 in the NICU was complete hell.  Chris and I woke up at 7:30 and I had just finished pumping and was planning on going down to feed Jett when we got a phone call.  Jett was being taken to Children's Hospital (connected to Brigham and Women's by a tunnel) RIGHT now.  Chris and I literally RAN down the hall to meet the nurse in time.  Or should I say demonspawn?  We really should have complained about her earlier (at the end of the shift, we requested that she not be allowed near our son ever again).  The day was so long and full of testing, and she just added to the misery.  She crossed so many lines.  She tried to make decisions for us and tried to not let me hold my baby.  Tried because I literally yelled at her.  Several times.  I definitely had "Mama Bear" syndrome.  For example, she said she would feed Jett (uh, I want to nurse him) and she was trying to hold his hand during the test (Who are you?  Both of his parents are right here.  Back off, Wench.)  She tried to sneak him to his circumcision without telling us, then told us we couldn't come in the room (yeah, right.  I know you're not in charge).  She also made little decisions that should have been ours--like giving him a ton of sugar water when he was calm and didn't need it or giving him a binky without consulting us. Needless to say, Chris and I literally took shifts and did not leave him alone with her for a single minute. 

Day 2 was also full of tests.  In the course of one day, Jett had:
- Ultrasound (of his kidneys and bladder)
- VCUG (They insert a catheter and fill him up with water and watch where the urine flows)
- Echocardiogram (Imaging of the heart and the fluid surround the heart)
- Typical newborn hearing exam
- Circumcision

It was just one thing after another.  We were all worn out by the end of the day.

Night 2 and Day 3: That night and the next day were much better.  We loved our night nurse again and she took the 3 a.m. feeding.  I was discharged the next day, so Chris went home to be with Lincoln and I stayed with Jett.  I didn't have anywhere to go, so I literally sat in the rocker by his little bed all day. 

Night 3 and Day 4: I stayed overnight in one of the family rooms.  Again, I skipped the 3 a.m. feeding, so I got my typical 4 hours of sleep.  By 6 a.m., I was back to sitting by Jett's side.  Around noon, Chris came and picked us both up. 

Overall, I am so grateful for the staff (minus hell lady).  I love that the Brigham is connected to Children's Hospital and I got daily visits from my nephrology doctors and a few visits from my urologist.  Being in the NICU itself is super depressing.  Looking at Jett, I almost forgot that something was wrong with my little boy.  But hearing the beeps from the other beds and monitors always brought me back to reality.  I'm sure that my crazy hormones and sleep deprivation did nothing to help the situation.  At one point, my day nurse was MIA and Jett's monitors showed that he was de-sating like crazy.  His oxygen dropped to about 60%.  He looked fine, but I was holding him and freaking out.  I started yelling for help because there were no nurses in my little section and finally a nurse from the other side came over to help.  It was nothing.  His monitor just slid off, but the feeling of utter despair and helplessness and panic is still strong. 

Even though we were only there for a few days, I can see how a lot of people get attached to the staff or other families.  No one else knows what you are going through, except the ones that are going through it, too.  I am grateful for the curtains I usually had up (intended for nursing privacy).  I cried when the couple 3 down from us went off to surgery with their daughter.  I bawled when the man next to us told the nurse his wife was still in the ICU, recovering from preeclampsia and hadn't met her son yet.  No matter how prepared you are think you are before you enter the NICU, you aren't.  The baby next to us got rushed off on an emergency and never made it back.  We are praying that he made it and was just transferred to Children's, but you never know.

I would never wish a NICU experience on anyone and I am completely in awe of those who have survived it.  We knew that Jett was a borderline NICU baby the whole time and it never made it any easier.

A Planned Surgery

Yesterday, Chris and I took Jett to Children's Hospital for a day of testing.  We were there nearly 7 hours and had blood pressures taken, bloodwork drawn, an ultrasound, DMSA, and a meeting with the urologist.  It was a full and stressful day, but we know a little more now.

First of all, the DMSA test was the big one for the day.  Radioactive material was injected into Jett's veins (which are tiny and apparently really difficult to find) and three hours later, he slept on a mat under a big camera while pictures were taken of his kidneys.  Somehow, the test is able to compare how much each kidney is working compared to the other one.  Out of 100% of function, Jett's left kidney is doing 80% of the work and the right is 20%.  Dr. Lee even speculated that he is doubtful that the right kidney is even doing that much.  We don't know how well Jett's kidneys are working in comparison to normal functioning kidneys, just in comparison to each other. 

Apparently doctors think that a kidney that is doing 20% of the work is worth saving and even though Jett's right one might not be doing that much, Dr. Lee thinks it is worth saving to see what happens after the initial surgery.  He thinks he will eventually have to go in to do work on the left kidney and can remove the right one later, if necessary.  So, for now, Jett will be keeping both kidneys.

 The DMSA also clearly showed that the top part of the right kidney wasn't the only contributing factor to filling the ureterocele in Jett's bladder.  Because it is receiving fluid from both ureters on that side, it no longer makes sense to remove the top portion of the right kidney in order to drain the ureterocele (which was the thought from last visit).  This leaves the other option: incise the ureterocele from the inside.  It will be a minimally invasive surgery where Dr. Lee will enter Jett's body through his urethra and basically cut a slit or hole in the ureterocele which will then cause it to deflate.

We don't really know how Jett's kidneys will respond.  There is a possibility that it could reduce the reflux going back up to the left kidney, although that is unlikely.  It could also start reflux going up to the right.  We really can't predict what will happen, but we do know that we need to take care of the ureterocele soon and remove that obstruction from Jett's body.

The surgery is scheduled for January 22.  It will most likely be the first of several surgeries.  I am scared to start taking this path (which only makes this all a reality), but I know we need to do it soon.  Jett will be 2 months old.