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).