A very rough day.....

Disclaimer...I tend to get carried away with words, with that being said this is quite a long post (again)


For those of you who have been following the blog from the beginning, you know that Nicolas was diagnosed with hydronephrosis (swelling of the kidney) in utero.  Last Wednesday, August 31st we had our first round of testing to find out more about his condition.  Needless to say, Enrique and I were nervous wrecks as we drove to Children's Hospital knowing that our precious baby boy was in for a long day of testing.  We arrived at Children's at 6:30 am to check in and Nicolas was scheduled for his first scan at 8:30.  At this appointment, Nicolas would have a test run called a Mag-3 which is basically a CT Scan in which they would shoot dye into his kidney and watch it drain to test kidney function.  In order to run this test, Nicolas would have to have an IV and a catheter....this is what mommy and daddy were dreading.

We were taken back into a room that looked very similar to a post-op recovery room.  Here we had to get Nicolas undressed and into a hospital gown.  Here are a few pictures of Nicolas in his gown....which is obviously too big.  This is the point where I my heart started pounding and the knot in my throat was almost unbearable....my poor 3 week old baby laying in a hospital bed in a gown.

Nicolas in his over sized gown

At this point he is still a happy baby just staring at the bright lights :(

After we got him into his gown it was time to start the dreaded IV.  I was doing ok with this at first...Enrique kept telling me "don't watch" but I wanted to watch to make sure they only had to stick him one time.  It was so hard to hold back tears and not jump out of my seat but I knew that me being upset would not help the nurses or Nicolas.  They didn't get him on the first (one hand), second (other hand),or third (one foot) try.  At this point I was about to lose it...for the 4th try the nurses had a physician come and stick him in his last remaining limb and they finally were able to access a vein but I was not able to hold out.  I started crying almost uncontrollably...one of those cries where you can't stop your bottom lip from trembling.  I looked over at Enrique and I could tell he was just as upset.  It was the first time we saw actual tears rolling down Nicolas' little face.  It is a feeling that can't possible be explained by words to be a parent and know that your child is in pain and there is nothing you can do about it...it just goes against nature I've decided.  I was finally able to hold Nicolas after the IV was started and I was able to squeeze him close, give him a kiss and tell him how sorry I was.

As the IV was going and getting Nicolas hydrated, we had our next challenge....the dreaded catheter.  This was another moment that babies just should not have to go through.  The first catheter the nurse chose she decided was too large (after she had already stuck it in poor Nicolas) so not only did Nicolas get poked 4 times by a needle, he had to go through catheter insertion not once but twice!  This did not make me a very happy mommy!  Once the catheter was FINALLY in place it was time to feed Nicolas and get him sleepy.  In preparation I had pumped and had a bottle ready to go.  Nicolas took the bottle like a champ.....

Hooked up to his IV and catheter...eating

Finally asleep

Once he was fed and asleep it was time for his scan....this would take an hour to do.  Luckily Nicolas slept through the entire scan.  It was very sad to see his tiny body against the big machine.  We swaddled him up and laid him on the table.  When the nurse brought out a roll of tape and started taping him to the table I'm pretty sure my heart stopped.  She told us this was for his safety in case he were to wake up and start moving.  For an hour we just stared as his kidney function was scanned.......

Such a tiny little head.....

Mommy and Daddy's view for an hour (our eyes were glued to him)

Next we went for an ultrasound of his kidneys (after his IV and catheter were removed) and this was an easy test....I judge what I consider to be "easy" as a test that does not make him cry!

After going through all of this we still had to go to the pediatric urologist for the results.

The results we were not ready to hear.....

After all of the testing, we discovered that Nicolas did not have a block in his ureter as suspected...he actually has something that is very rare.  His right ureter is actually closed off where it is supposed to drain into his bladder.  The good news is both kidneys are functioning great!  The bad news is Nicolas will need to have surgery.  On September 26th we will be spending another day at Children's Hospital while our precious baby boy has his procedure.  This is a day procedure but he will have to be put to sleep which just breaks my heart to think about.  The doctor will go in through his penis, into his bladder with a tiny camera and find the closed ureter.  With a tiny little hook he will cut an opening where it is supposed to be.  This process should only take about 15 minutes....I'm guessing it will be the longest 15 minutes of our lives.  I'd like to say that after this we won't have to worry about anything ever again...unfortunately, that is not the case.  This procedure has a high risk of causing reflux back into his kidney.  We will not have this tested until November.  At that time, if the reflux is present and severe, it means a more invasive surgery.  

Needless to say, Enrique and I are pretty upset over all of this but all we can do is keep praying for our brave little boy, try to stay positive....and of course love and spoil Nicolas rotten.  For the next month we are giving Nicolas antibiotics to ensure he does not get an infection since his right kidney is still swollen and draining at a slow rate.  We will need to just be cautious and try to keep him well for the next month as flu season is approaching.  Unfortunately, this means we have to be cautious of who he is around and not expose him to school-age children or kids in daycare that might be carrying germs.  Not only has he not had his shots, but now we have surgery we need to keep him healthy for.  

Here is a video of us giving him his medicine for the first time....sad but kind of cute and funny too.

Sorry for such a long post.....I told Enrique this if a form of therapy for me!  Here is just a picture that I think is super cute of Nicolas grabbing his blanket looking like he is up to no good :)  and now back to spending time with the new love of my life.....