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.

Introducing Baby Taylor

Well, he is here!  Jett Gregory Taylor made his grand debut into the world early in the morning on Tuesday, November 19, 2013.  He weighed in at 7 lb 3 oz and was 21 inches long.  Chris and I went in to start the induction process on the night of the 17th and after nearly 24 hours of nothing happening, my body kicked itself into labor (without pitocin).

To make a long story short, labor lasted exactly 90 minutes from first contraction to baby born.  I decided against an epidural and did this the old fashioned way (not that I had much of a choice because it all happened so fast).  Chris and I walked a couple of laps around the hospital floor and we barely made it back to our room before my body started pushing.  Luckily, a team of nurses and residents were very nearby and four pushes later, Jett entered this world. 

He immediately got passed to the neonatologist team who helped clear his mucous and make sure he was stable enough to stay in the room with us for a little while.  Then Chris and I got to hold him and be with him for almost an hour before they took him down to the NICU. 

The next four days in the NICU were long and miserable.  Jett was huge compared to the preemie babies, but he still had troubles of his own.  He was hooked up to several monitors: heart rate, respiratory rate, and oxygen saturation levels, although he didn't really need any of those things.  While in the NICU, he had a whole slew of tests--both typical and more specialized to his case.  He had the regular newborn hearing test, 2 ultrasounds, a VCUG (where they filled his bladder with dye), echocardiogram (all fluid around his heart is now gone), circumcision (we wanted this, and it was also VERY highly recommended to prevent UTIs which could be serious for him), and a slew of bloodwork every 12 hours.  He was also put on antibiotics, which we are continuing at home, as well as hooked up to an IV for a special one-time dose of antibiotics.

After 4 days, Jett was cleared to come home (just one day after me).  We are now running around Boston visiting different doctors--pediatrician, urologist, nephrologist, and getting visited by nurses--but at least he is home.  He has 5 appointments this next week with another ultrasound and VCUG.  We are looking at an MRI and functional kidney scan in a few weeks and definite surgery in a couple of months, if not sooner. 

I feel like this journey has been hard so far, but I know that it is only the beginning.  In a way, I was almost jealous of the preemie babies when we left the hospital.  When preemies leave, they have tackled most of their big hurtles and with some extra catching up and monitoring, most preemies do okay in life.  That is not the case for Jett.  He is okay for now, but is facing a long life of surgeries, medicine, continuous monitoring/testing, and a possibility of transplants.  It seems like our road has only begun. 

However, as I held my sweet boy on Thanksgiving day, I was completely overwhelmed by how grateful I am to actually hold him in my arms. The other day, one of the doctors said that looking at his prenatal ultrasounds and scans, it was "surprising" that he was able to come home as quickly as he did.  Based on what they saw beforehand, they thought he would have a much longer hospital stay and would not have left the hospital without intervention. 

Jett is truly our miracle baby.  We are so grateful for all of the support, love, and prayers offered on his behalf and ours as a family.  I will probably do periodic updates on this blog, but will share more on our regular blog.  Although I respect and understand other people's decision to post pictures of their kids on facebook, Chris and I have decided to somewhat limit our children's online exposure and let them make that choice for themselves when they are 30 and see a computer for the first time.  ;)  I will be making my regular blog private very soon and if you are interested in following along over there, send me your email info.  Otherwise, enjoy these small snippets of Jett!  And thank you again for your concern during this difficult time in our lives.

Nearing the End

I had my last check up with Children's Hospital yesterday.  Next step--birth. 

The baby's fluid levels are still normal, however, his kidneys are a little more dilated than they have been in the past.  They also found trace amounts of fluid surrounding his heart.  So, what was supposed to be a quick ultrasound turned into an all day affair.  After 2 echocardiograms and a meeting with the pediatric cardiologist, we think that there is nothing new to worry about.  The doctor said that the extra fluid around the heart may be due to the problems with the kidneys and how he is so scrunched up inside of me.  He doesn't even think that we need a follow up after birth because the fluid amount was so mild, but I am sure that we will get one anyway.

My meeting with the urologist was a little different this time.  Normally it's a quick update on the fluid level, answer some questions, and set up the next appointment.  This time, Dr. Lee told me that his kidneys look more dilated and that could be from a change or because the baby just peed and it refluxed back into the kidneys.  His next statement caught me by surprise, "I think it's about time for this baby to come out."

Wow.  My high risk doctor will work with Dr. Lee and I will probably be induced next week or the following week.  I am 36 weeks now, so I do have a term baby and delivering next week isn't that much earlier than I delivered Lincoln.  Whereas I knew that there was still a chance that I would need to be induced and even kind of hoped that I would deliver next week (to keep Plan A of babysitters for Lincoln), it still kind of hit me hard.  Relief that I will finally hold my sweet boy as well as utter terror that we will be leaving the comfort of a complicated but consistent pregnancy and head back into the unknown.  I am so scared of being induced and giving birth again, but even more scared to hear the results and find out just how bad this little guy's kidneys actually are. 

This little guy was using the placenta as a pillow--that's what all that floaty stuff around him is.

On my way out, I got a brief NICU tour at Children's, although our baby will probably start over at the Brigham.  It was heart breaking to see row after row of baby lying in their hospital beds.  That poor nurse who showed me around.  I am sure that I am not the first mother to cry thinking about my sweet little boy lying in one of those beds when all I want is to hold him and have him sleep in my room with me.  I don't know how long I will get to hold him before he is taken away from me, but the nurse told me to have Chris take lots of pictures so I can look at them until I am able to go down and see him for myself. 

So, once more, Chris and I ask you to keep this sweet little baby in your thoughts and prayers.  I have leaned on Chris and so many friends and family throughout this pregnancy and I think that I could use all of your support now more than ever.  Thank you for helping us through this journey thus far.  We will try to do another update when this little guy is born, and hopefully home from the hospital.

 My favorite picture so far.  I love his little fingers that are almost always up by his face.

Nearing Full Term

It's been a while since I've done an update about the baby because all systems have been pretty stable over time.  I am now 34 weeks, nearly full term!  Never did I anticipate that I would actually be this far along and holding steady.

I ran the gauntlet of tests a few weeks ago, with a fluid check last week.  This baby is growing right on par, and the doctors think that he will be bigger than Lincoln.  That's okay, but I just want him small for the delivery!  There were 2 changes this past visit.  First, the top portion of the right kidney is shrinking.  It's where all of the cysts are.  This is kind of neutral news.  Since that part of the kidney is not really functioning anyway, it may just be trying to extinguish itself.  The other change-- the baby's bladder was more full than we have seen it.  This may be because the utererocele is getting larger and blocking more, or it could be because the baby hadn't peed in a while.  The fluid levels remain in the "normal - high" range, so neither one of these changes is really concerning.  Dr. Lee did mention that we may have to get surgery for the baby right away instead of a few weeks/months out, but we really won't know until we get closer to delivery.

I finally met with the doctor that will supposedly deliver me.  He is a high-risk doctor and practices with a team at the Brigham.  He was recommended by Dr. Hardiman and I really liked him.  However, since he is part of a team, it is unlikely that I will actually deliver with him (Dr. H delivers 95% of all of her own babies) and since I am not high-risk, the baby is, he said that I can keep following up with Dr. H.  We will meet once more when I am full term to go over birth plans, etc.  He also doesn't see a reason that I would need a c-section, so we are shooting for spontaneous labor.  (Give me 3 more weeks then start praying for that--induction sounds miserable).

I also met with the NICU doctor.  So, our baby is a borderline baby.  Other than his kidneys, he is doing well.  We could probably fight to keep him in the well-baby nursery, but the NICU team is more equipped to do all of the monitoring and tests that we will need to have done after delivery.  As much as I want our baby in my room with me, I know that we are delivering at this hospital for these tests.  I would much rather suffer a day or two of only being able to visit my baby than bringing him home and constantly worrying that something will go wrong.  I know it will be so hard, but with luck, they will only need to monitor him for a day or two and we will be discharged home together.

As far as normal baby things go, we are getting closer to being ready.  We bought a mini crib for him (no way is Lincoln going to be ready for a big bed until he's 19 or 20...), we're washing clothes, and we are 85% sure we have a name for him!  We'll go to the hospital with 2 names, but we're pretty sure which one will win out. :)  Just having a crib and name for him have made me feel less stressed, which has significantly lowered my Braxton-Hicks contractions...

Aiming for Full Term!

I spent another afternoon at Children's Hospital last week, going through the whole gauntlet of ultrasounds and doctor meetings.  Every time they do an ultrasound, they measure each of the baby's limbs, brain and heart structures, etc before spending extensive time with the kidneys.  I love watching him roll and move around, but when it comes to the kidneys, I had to close my eyes.  I kept scaring myself by incorrect interpretations, and really, we already know something is wrong there.  This little guy took a long time to measure because he was constantly rolling and kicking around in there.  His arms with both fully extended (which is rare because we haven't seen them leave his face yet) and he was doing the little "shooters" with his fingers--just like Lincoln does.  Unfortunately, despite his moving and rolling around, he kept his face burrowed into me so we never even saw his profile or his face.

The results: fluid levels are still within the normal range.  Meeting with Dr. Lee was really great.  We talked a lot about delivery and post birth.  He sees no reason why we can't aim for full term!  Just 8 weeks ago, I was being asked to terminate and now we are shooting for week 40!  And because kidney problems are serious but not of immediate concern (like cardiac or lung problems), he says there is no reason why I can't go into spontaneous labor and push this baby out the old fashioned way.  I am so excited about that!  Less excited by the number of doctors, nurses, residents, fellows, etc. who will be in the delivery room with me, but I was so dreading a c-section (1. Because it is a major surgery and 2. because I wouldn't be able to pick up Lincoln for 6 weeks).

Here is even better news.  While this baby is still going to need surgery after birth, there is a good chance that we can take him home before he needs it!  Last time we met, Dr. Lee thought he would have to perform surgery hours after birth, but ideally, he would like to wait until the baby is 2 or 3 months old (we're aiming for weeks right now).  He encouraged me to talk with the team and make it clear that as long as there aren't other problems, I want that skin to skin time immediately after birth and that first feeding.  If he is stable medically, I should be able to have a few hours with him.  I am so thrilled about this news.  I was worried that while I am away from Lincoln for the first time, they would also whisk my baby away for surgery before I even got to hold him.  I told Chris to follow that baby wherever he goes, but it is nice thinking that I may not be left alone right away.

Of course, this is all best case scenario news, but for once in my life, I am optimistic about this situation (which is pretty uncharacteristic of me).  Things can still change and my baby will still need surgery and will still be in the NICU, but for now, it seems like we can push some of our worries away for a few months--until this baby comes.  For now, I think my biggest worry may be what to name this active little boy.

I AM Pregnant

When I first got the news about this baby -- the no hope news -- the doctor said and I quote, "You may look pregnant and you may feel pregnant..."  Well, as offended as I was, he was right.  I DO look pregnant and with this little guy rolling and kicking all of the time, I DO feel pregnant.

But, he was wrong about one thing-- I AM pregnant.  I am not just carrying a "fetus," I am carrying a baby.  MY baby.  Chris and I are so grateful for Boston Children's Hospital and the hope that the doctors brought with them.  As soon as we told them we intended to fight for this baby, they rolled up their sleeves and said, "Let's get to work."

Currently, I am 26 weeks along and we have passed a very important landmark, one we thought we might not reach.  This baby is viable.  That means that if he were to be delivered right now, he would have a shot at living.  This week, his odds are up to roughly 80%.  I got my fluid levels checked last week and they are within normal range (which has been the main concern for us right now).  Chris and I have dropped all talk of "but what if..." and starting to look towards our future with hope.  We are planning out when to wash the newborn clothes again and stock up on diapers, where to put the bassinet, who is going to watch Lincoln that night, etc.  We are so grateful for the continued prayers of friends and family and know that the miracles that have been occurring these past 6 weeks are largely due to you all. 

And, I think I do look pregnant.  I think pregnant women are perhaps the most beautiful women out there and when I was pregnant with Lincoln, even at 38 weeks, I convinced myself that I didn't look pregnant.  Now, I think I do (at least when I am standing up) and I love it.

Stable is good

Brief Update: No news is good news!

The amniotic fluid levels are still within normal range, so the doctors are feeling hopeful about this little guy making it to this world.  He is looking at a couple of immediate surgeries and probably some time in the NICU, but we are so, so hopeful!

I think he's getting cuter.

The Full Report:

The little squirt and I went back for more extensive probing and pictures at Children’s Hospital today.  I lay on that little ultrasound table for nearly an hour and a half and watched him the whole time.  He was moving around, rolling and kicking for pretty much the entire session.  He likes to keep his hands up around his face and even tucked them into his neck.  I got a great shot of his nose and little nostrils today, which was really cute.  Currently, he is estimated to weigh about a pound. 

His fluid levels are within the normal range.  He has 13 cm of fluid (normal is 8-20ish for this time in pregnancy).  This is what they are monitoring most closely right now because of the impact the fluid has on lung development.

The little guy’s kidneys look much the same as last time.  We were able to see that the cysts that he has on the right side seem to be localized to the top portion of the kidney, which is what we were hoping for.  It looks like the top portion of the right kidney is in pretty terrible shape and might be what is causing all of the problems for the rest of the urinary system.  The bottom of the right kidney is doing a little better and although it is still dilated, Dr. Lee speculated that it might just be the kidney’s compensatory strategy to deal with the top portion of the kidney and that it might be doing better off than we thought.  We did find out that the left kidney is also a duplex kidney, meaning this kidney also has 2 ureters coming down and draining into the bladder on that side as well.  This kidney is not in great shape, but it’s working okay for now.  No ureteroceles or cysts on this side, which is great news.  Both the tissue in the bladder and kidneys (with the possible exception of the top right portion) look really good.  The tough thing about kidneys is that we can’t really track how they are functioning until the baby is born.  So, for now, we will mostly be meeting with the urologist (who is looking at the overall running of the urinary system and making sure urine is exiting) and then we will be following up closely with the nephrologist when the baby is born and throughout his life.  He is the one who would decide if and when the baby would need dialysis or a transplant.

Chris and I were elated when we left.  We even celebrated by going out to dinner.  Whereas a lot of people may still be devastated that their baby’s kidneys have such an uncertain future, we are so filled with hope.  I guess once you hit rock bottom, anything that sounds like a chance really lifts you up.  And while we may still have a rough road ahead of us, we are choosing to look at the bright side (which is so unlike me).  We are so grateful for the prayers and support we have received and want to say—Don’t stop now!  I really believe that the Lord is blessing us with good fluid levels and stable progression and is answering the many prayers being prayed in our behalf.

*We do a fluid check in 2 weeks and go back to Children’s in a month. 

 If you look closely, there is his hand, always right up next to his face (on the right).

Update

Brief Update:

Chris and I went to see 2 more specialists at Children’s Hospital on Friday (July 19).  They took another ultrasound with a million pictures with a million different cameras and angles.  The ultrasound specialist told us that the amniotic fluid level was within normal limits, which is good news.  After a few hours, we met with the fetal/pediatric urologist, Dr. Lee, who had spent quite a bit of time reviewing our ultrasound.  He was kind and informed us that our baby does have kidney disease.  The tube coming from the right kidney has an obstruction where it enters the bladder, making urine impossible or extremely difficult to get through, hence the buildup of fluid and inflammation of the right kidney.  The left kidney is in moderate condition.  Although I will be monitored very closely throughout this pregnancy, Dr. Lee was very hopeful that if the kidneys continue doing exactly what they are doing right now, we may be able to make it to 32 weeks.  He did reiterate that our child has a very rare condition and that this is still a really serious situation.  He cannot guarantee that something will not go wrong, but he is cautiously optimistic. 

We meet again with him and a nephrologist (who will discuss with us life with 1 kidney; possibilities of future kidney transplants, etc) in about a week.  Although we still are not certain of the outcome, Chris and I left feeling very hopeful and extremely grateful to have found a doctor that is willing to fight with us.

His feet (wouldn't rotate)

The long story (with medical details and such)

After our devastating news on Tuesday, we went for a second opinion and to see even more specialists at Boston Children’s Hospital on Thursday.  We started our long day with another ultrasound.  It was the third one I had done in a week and normally I’d be elated, but considering the circumstances, I couldn’t even look at the screen when they went to analyze the baby’s kidneys.  Other than the kidneys, this baby is one healthy little guy.  He even gave us a thumbs up.  When the radiologist/ultrasound specialist doctor came in, she said that my amniotic fluid levels were within the normal range, which was really good, as that is what we are really monitoring right now.

Our second appointment was with the fetal/pediatric urologist, Dr. Lee.  He was straight forward with us, but also gave us hope.  He had spent a good portion of time reviewing the hundreds of ultrasound pictures that were taken and came in with a diagram to explain our baby’s situation to us.  So, the baby has renal failure and the right kidney is in serious condition.  This baby has what is called a “duplex kidney.”  Instead of one, he has two ureters coming out of the kidney and emptying into the bladder.  This is a fairly common abnormality.  However, the baby also has a ureterocele, which is a little obstruction at the base of the ureter, where it empties into the bladder.  This obstruction is preventing urine from entering the bladder, so the urine is being retained in the kidney, causing it to enlarge rather than emptying through the bladder and becoming amniotic fluid.  Having the ureterocele with the duplex kidney is what puts us in the 1% of those babies with kidney problems, making this a very rare and serious condition.  The right kidney also has a couple of cysts that have formed in it.  It is unclear whether they are localized to the top third of the kidney or whether they are throughout the kidney. Localizing them would be better because the doctors would be able to correct this much easier in the future.

If all of the problems were on the right side, we would probably be just fine.  However the left kidney is in moderate condition.  It is a little larger than normal and Dr. Lee speculated that it may be experiencing some reflux—every time urine is released from the kidney, a little backflows.  This normally wouldn’t be an issue and again, a lot of babies have it, but because of the condition of the right kidney, this makes everything more complicated.

Dr. Lee was really great and also pointed out some positive things.  First of all, the amniotic fluid level is normal, for now.  This means that whatever the baby is producing is enough for now.  The texture of the baby’s kidneys and bladder are also all right and the bladder isn’t too engorged.  Although we have a lot of serious issues, there are some good things as well.  Dr. Lee said that the development of the kidneys was pre-determined long ago and that the cells were going to continue to divide the way they have been dividing.  He said that if things progress as they have been, we may not even need dialysis or a kidney transplant when the baby is born.

When I brought up my concerns about being able to continue this pregnancy and that terminating wasn’t an option for us, he was completely supportive.  When I asked how long to aim for (to carry this child), he said, “Why not aim for 32 weeks, maybe even 36.”  What a wonderful feeling.  That way, the prematurity of the infant wouldn’t be an issue and we would only have one area to focus on.  He was cautiously optimistic and let us know that while we could hope that things stay about the same, there is no way to predict if things will get worse and that they very possibly could.  Before we left, I asked him very bluntly how long this baby could survive with the fluid levels as they were if his kidneys completely ceased to function right now.  He answered “2 weeks” and that is why my appointment is for 2 weeks. 

Chris and I felt so comfortable with him and so good after meeting with him.  It was such a turn around from Tuesday.  We know that our situation is still very serious, but we were so grateful to leave the office with hope.  I was so grateful that he kept saying, “After the baby is born…” or “when the baby is born…”  It gave me a little confidence that we can make it.  I am also comforted that I know that my baby has enough fluid to survive on until we can check again.  I am sure that I will get more and more anxious as these two weeks come to a close, but I can take it day by day if I have a reasonable confidence that my child will be alive when I wake up the next morning. 

Chris and I go back next Wednesday (7/31) for another ultrasound and urology appointment.  We also meet with the nephrologist for the first time.  He will discuss things like “life with one kidney” or “what to do when your child’s kidney fails at 1 year/12 years/etc.”  I am nervous to meet with him but will be great to be talking about a future child.

Brief Thoughts

 I also know that despite our best efforts to get out, we are in Boston for a reason—this child.  If there is any hospital in the world that can save his life, it is this one.  In the 2013 rank of Children’s Hospitals, Boston ranks #1 in neonatology, urology, and nephrology.  All things that we need, or will need.  Children come to Boston from all around the world and Chris and I are extremely blessed to be 20 minutes away. 

I know that we have more hard times coming and a lot more up and downs.  We appreciate your continued prayers and support in this trying time.

My first specialist appointment (for my own records.  Read on if you are curious, or want to be extremely angered):

After our initial ultrasound last Thursday (7/11) we asked the doctor on Thursday if it was fatal, she said it was “extremely unlikely.”  Okay, so our baby is going to have kidney problems and might need treatment, but we can do all this.  Our baby will make it.  Chris had a one day trip in DC and we agreed that he would go to that and I would go to the specialist appointment by myself.

I dropped Lincoln off at a friend’s and went to handle the hardest day of my life all by myself (7/16).  I walked in and had my ultrasound re-done.  We found out for sure that this baby is a boy.  After the ultrasound, the fetal-maternal doctor came in.  I was lying on the table with my shirt up, ultrasound gel on my stomach, lights dim.  I was in the most vulnerable position I could be in.  And, he didn’t even end up taking a second look. 

Well, he let the news drop.  This baby has renal disease and one kidney has almost completely ceased to function.  The other one is showing signs of failing as well.  I wept silently on the table.  After a few minutes, I wiped the tears from my face and said, “Okay, what do we do?”  He responded, “There is nothing we can do.”  I have never sobbed so hard in my life.  I was going to lose my baby.  He continued, “You have a lot of choices to make.  You still have a little time to decide, but you could terminate now.”  I interrupted him, “No! That is not an option for me.”  To which he responded, “Then you need to start thinking about how much life support you are going to give this baby when he is born.  He is going to need dialysis and a kidney transplant.”  He was throwing red flags all over the place and I was in too much shock to see them. 

He also wants me to get an amniocentesis done.  That is the needle/analysis that you can get early in pregnancy that can detect Down’s syndrome.  I never opted to get it because it doesn’t matter to me whether my child has Down’s or not, it is my child and I am keeping him.   Well, he wants me to get it done now to determine if this is a chromosomal defect or not.  If it is, then the baby will not survive and he will treat the pregnancy difference.  He also wants me to leave Dr. Hardiman’s care and continue seeing him.  He will deliver me at Beth Israel so we can be closer to Children’s Hospital via C-section.   Looking back, I was still in shock, but I have never been so offended in my life.  Why in the world would you treat this pregnancy different if you knew the child would die soon after?  Why should I get that testing done? 

Although he was kind at the time, I do not like that man.  He shares none of my values and kept calling Chris out for not being here with me.

Luckily, I had some semblance of reason and I walked straight up to Dr. Hardiman’s office.  By the grace of God, she was in her office, sitting behind the front desk.  She was actually waiting to get a hold of the doctor I just saw and just came down from a delivery. 

She sat and cried with me for an hour while I processed everything.  She explained that if the kidneys weren’t putting forth urine, the amniotic fluid around the baby would continue to get lower and lower until it affected the development of the lungs.  Without proper lung development, the baby could not survive outside of the womb.  She said that best case scenario, this baby makes it to 28-30 weeks and is able to be delivered.  He needs dialysis and kidney transplant, but his lungs will be developed enough to survive. 

Dr. Hardiman explained things to me in simple terms and helped me struggle with the realization that I might not have a baby at the end of this pregnancy.

After today, Chris and I were left with little hope, just of a miracle that our baby could make it to 28 weeks.