Another Jax Update

So, the urologist isn't sure the pain Jax is experiencing is his kidney.  He said that its quite difficult comparing an ultrasound to a CT scan. He said that it would be much better to compare apples to apples.  We have another appointment April 23rd for an ultrasound and follow up appointment with Dr. Alagiri.  He did say that its unusual after 2 years for a new blockage to occur.  However, he did say that the area of pain that Jax keeps pointing to is exact.  He also said that if Jax continues to experience pain he'll order the renal scan just to be 100% certain. 
He asked us about Jax's pain.  He asked us if Jax was in pain before the kidney surgery and we both answered with an emphatic yes!  Everyone who knew him before the surgery knows that Jax came out of surgery a completely different baby from when he went in.  It was nuts.  You know that saying, like night and day? That was Jax.  He went from crying and screaming all the time to being a normal baby who only cried when he was tired, hungry or needed a diaper change. 
Jax has only complained about pain once since the appointment and that was this morning.  He didn't double over and cry like the last time he had the pain.  But he was pointing to the exact same place and wanted me to hold him as he worked through it.  Its pretty heart breaking.  :(

Sweet baby boy

Jax polished off a bottle of glucose water before they called us back. When I came in I could hear him crying. He took a bottle from me and then fell asleep. 
Jennifer

Yay!

That was quick! He's out! We'll get to see him when he wakes up. Doc said everything went well. Jax will have another nuclear med scan and ultrasound in 2 months. That's how we'll know if the surgery was successful. 

Jennifer

He's in surgery

Jax is in surgery now. My apple juice trick worked! Had he gone in on time he would have went in happy. BUT, he didn't. Oh well. So, the last 15 minutes before they took him back he cried. I'm sure it was just because he was hungry.
The anesthesiologist said he will be intubated. That hit me like a ton of bricks. I know Jax's situation is way different from Maryam's, but I'm still really scared. I've seen and lived the ugly side. Even the anesthesiologist understood my fears. He said, "Wow! Yeah, I see why you're worried." Then he went on to trying to soothe me. I think I'm fine.
Hopefully all will go without any problem.
Jennifer

Kidney surgery part 2

Jax has part 2 of his kidney surgery today.  We'll take off from here around 10:30 because we have to check in at 1:30. Surgery isn't actually scheduled until 3:30.
He can't have any food this morning and we can't give him any formula past 9:30. I know many mommies frown upon giving babies juice but he's allowed to have clear liquids until 12:30. After our heart wrenching screamfest we parents had to endure from our starving baby last time, this time I'm caving. I bought some of that Gerber apple juice yesterday. The bottle says there are 70 cals per a 4oz serving.  His formula is 80 cals/4oz serving. My hope is that juice will make him feel full and I wont have to have my heart broken listening to him cry while looking at me with his pleading eyes.
Will update when I can.
Oh and it occurred to me this morning that I never sent out an official email announcing that I changed my email address.  My new addy is: bandjlangdon@gmail.com

Jennifer

The drainage tubes

Here are some photos of Jax's drainage tubes. Less and less is draining from them hourly/daily. The site looks excellent!  His apt to have them removed is next Thursday. The obstruction is definitely gone! Seriously, its like a dam has breached!  He is peeing a flood! Poor Littleton guy slept 10 hours straight last night and woke up in a puddle of urine. His whole diaper, sleeper and mattress were all drenched. Couldn't help but to feel bad for him!
He's still refusing solids. I'm guessing his throat is still a little sore from being intubated. I'll try offering a solid again tomorrow at breakfast time. One thing Brett and I both noticed is he's not nearly as grumpy as he was before the surgery.  Does that mean he's been in pain this whole time? We sure hope not, but we're both thinking maybe.
Thanks for all the comments, texts, email, facebook notices, prayers and well wishes. We have a wonderful network of family and friends.

Jennifer

Got sprung!

My happy, tired boy.

Jennifer

Discharging soon!

The IV is out. All monitors are off. We should be out of here by lunch.
Drainage is minimum. I'm actually surprised by how little there is coming out of his tube. We've only had to replace the dressing 3 times!

Jennifer

Mommy and Daddy with Jaxosaurus Rex

We're going home today!!! This news made us all very happy.

Jennifer

Good morning!

Jax is still an eating machine! He had 6 more ounces at midnight and 4 am! At 6:30 when he woke up he wanted more! I gave him 4 ounces and a jar of #2 bananas and he was still hungry!
I can tell his coddle epidural wore off.  He's kicking so much that he has kicked off his blood pressure cuff, pulse ox and worked his dressing off of his incision.  Yes, he's that active coming out of kidney surgery!  Don't you just love a baby's resilience?

Jennifer

Eating!!!

He just ate another 6 ounces. He had 4 ounces of glucose water at 4 and 2 ounces of formula around 5! Little guy is eating like a champ! 
Of course he can't sleep bc our roommate's guests are LOUD!!!! And the nursing staff has no problem banging equipment into walls and/or doors.
Its going to be a long night!

Jennifer

My baby boy

Jax's vitals are good. His temp was low, but we got it up with the help of his fluffy polka dot blanket. He has a pulse ox, IV fluids, Toridol ordered for every 6 hours and Tylenol as needed.
He's in a room with 2 other children,  he's the youngest.  He tried to suck on his IV and chew on his pulse ox. Now he has a "no, no!" cover on his IV and we moved the pulse ox to his toe.
Right now he's asleep in Daddy's arms.

Jennifer

Looking good!

Jennifer

He's out!

Jax is out of surgery and in recovery.  We should be able to see him in a half hour. Everything went well, small incision on his back. He has a drainage tube that will be in for a week and a stint that will be in for 6 weeks. Kidney looks good, operation should be a success.

JL

Jax is in surgery

Jax's is really hungry! He had a bottle at 6:45 and has been crying since about 10:30. Brutal.
He's in surgery now. The procedure takes anywhere from 2.5 hours to 4 hours. We'll update again when he comes out.
JL

Cutie baby boy

Jax's surgery is tomorrow

So, yeah I'm nervous.  Look at my cute sweet boy. Its hard to believe that tomorrow he'll be undergoing major surgery.  I'm Glad that it will be over with, but I'm still super nervous. 
I started writing this post around 11 am Tuesday. Now it's after midnight on Wednesday and I'm still searching for the words.
I moved on from super nervous to scared. I'm sure my fear stems from my lingering PTSD that started when Maryam was born. I'm just all too familiar with all the bad things that could happen. Not that they will happen,  but knowing that they could sucks.
Today was a perfect day. My little grumppopotamus was an angel. Its like all of a sudden I was able to figure him out! He even enjoyed his bath today. ENJOYED IT. He tolerated his last bath, but every bath before that was torture!  Today he splashed, smiled and laughed the whole time. It was awesome!  I even shot some video.
I'll try to update the blog throughout the day. Wish us luck, say a prayer or do whatever you do to bring good things to someone in the universe. Thanks!

Jennifer

Eating update

Maryam has been eating like a champ! Its a bit surreal to see her feeding herself or hear her asking for food. For example, this morning she helped Daddy bake blueberry muffins. After they came out of the oven she actually wanted to eat one! She ate about 3/4 of it before she didn't want anymore. For lunch, her and Daddy were out shopping and she asked for chicken nuggets and fries! He got her some and she ate 2 nuggets and half a small order of fries. For her snack this afternoon she ate a pudding cup, pepperoni, and a candy bar. Then for dinner she asked for mac n cheese. We had bought some ready mac for when Charlie Mae is here, so we made some for her. She ate all but 4 bites of a single packet! That's a whole day of solid foods, all of which she asked for. When she was eating dinner she kept saying, "all by myself" and would feed herself the mac n cheese. I'm so proud of her.

Jax is eating like a champ too! He finally latched on a couple of days ago. So now our routine consists of me nursing him all day and then Brett bottle feeding him at night while I pump. That way we both get the opportunity to feed him. We've done it this way for a few reasons. One is so we both get to see what its like to feed our new born, two because we want Jax to be able to nurse and drink from a bottle and three it gives Mommy a break. When he does drink from the bottle, he's up to about 70mls in 20 to 30 minutes.
Tomorrow we have to take Jax to Children's Hospital in San Diego for an appointment with a urologist. Jax has hydronephrosis severely on his left kidney and mildly on his right kidney. We're meeting to find out if he needs to have surgery or if we can continue on the regimen of antibiotics he's been on since he was a few days old. From what I understand, a series of tests will be done and then decisions will be made based on the results. Wish us luck!