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.