Jet is One Week Old!

Yay for one-week birthdays! :) Our little fighter turned one week old today (a very special day to us - June 2nd - our 3 year anniversary! I love you sweetheart. :) We went to visit our little one - the best anniversary present we could ever have. I had another chance to nurse him (he was so sleepy though, it was hysterical to watch him just conk out despite my kissing and nudging and talking to him. He was out cold. lol.) And David and I both had some practice cathing him (it's not as hard as it seemed, but it does take a while to empty his bladder that way). He had a test done this morning to see what is going on with his bladder function. Like I mentioned previously, bladder weakness is textbook for SB but we are still praying fervently for a way to fix it so he can have more bladder control long term. 

We did receive some great news today (the blessings just keep coming :) ) Our prayers were answered and Jet's head ultrasound showed no change - no additional swelling for fluid! :) This is such a good sign and we keep praying that he will stay stable and avoid a shunt. This being the case, the doctor told us today to begin "preparing for discharge" saying that our little boy may be able to come home as soon as Friday! Now this can all change - the medical world is a fickle one we know - but we are so excited that he is doing well enough to possibly come home in the next few days! We cannot wait to have him where he belongs.

The Happy Family :)

Look at that face! 

Aunt Kay loves her nephew

Mommy and Daddy say Goodnight

Happy 3 year anniversary to the proud parents!

Good Night Angel.

Peek-a-Boo

So here are the pictures from Sunday night when our little boy opened both his eyes for the first time to look at Mommy and Daddy. It was so cute! He still had the feeding tube from that morning in but they took it out shortly after this video and he hasn't needed it since. yay! The video is too short (daddy stopped taping because he wanted to watch it live without a camera in his way) but you get the idea of how happy we were to see him so awake. :)

Hello everybody!

Here is his first modeling pose. :) Work it baby! We think he's a natural.

Below is the video. Listen to our baby talk. lol.

Saturday Sweetness

So we went back to see our boy on Saturday. Mommy couldn't sleep in so we got up there and said good morning to our baby. :)

Mommy's Little Angel

Daddy's Little Tiger

 This is what Daddy picked out for Jet to wear on Saturday. :)

It's Great To Be an Auburn Tiger!

The Penny Boys :)

So we've learned from the nurses that besides being the most popular baby in the NICU, our little Jet has quite the temper as well. :) He had us all fooled with his sleeping act (he still sleeps alot!) until the nurses started telling stories about how he has a strong pair of lungs and he uses them when he is hungry or not happy with being handled. lol. 

Here are some of his tough guy faces...

Mommy got to feed her Jet a bottle again on Saturday. This is the best thing ever. 

He opened his eyes for just a moment and it was so sweet. It was like he said "hi mommy!"

His little hand resting on my arm.

Then Mommy realized that Daddy still hadn't had a turn holding him yet so she switched places. 

So here is Daddy time. He's got Daddy wrapped around his finger too. :)

We are thrilled he is eating so well now! Yesterday morning the nurse called us to say they had put a feeding tube in his nose because he didn't finish his breakfast quota of milk. We had been warned this could happen because they want to make sure he gets the food he needs to grow and stretch out that tummy. We were a little sad because we hated to see that little tube in there but apparently he slept through them putting it in and didn't seem to care. However! - Mommy talked to him last night and told him to eat up and since then he has eaten MORE than his minimum and they have removed the tube. You show them baby boy! You don't need no silly tube! :) Last night was amazing - our little angel opened both his eyes for the first time and looked at us. David and I talked to him for a good half hour and he just stared up and listened and sucked his paci. :) He would get fussy while the nurse was changing him (and cathing him...yes they are doing that every 4 hours until they check out his bladder more closely....it's common for SB babies so we are going with the flow) but he totally got quite every time we spoke to him. It was magical. I will post a video and pictures soon of his beautiful eyes! 

But to top it all off--I got to breast feed him today (Monday...he's almost a week old now) for the first time! He did SO SO good! I'm no expert but I think we did an awesome time our first time around. lol. I was a little afraid of holding him (even though the doctor has given us the okay to put him on his back and side now..good boy!) because his staples are still there and he is still healing. But he didn't seem scared at all and screamed until they finally gave him to me to eat (he was hungry apparently. lol.) So..no pics of that one. haha. But it was wonderful. I hope to make a habit of it. ;)

So to wrap up this update... Jet is eating well... incision is healing well... can be off his tummy now sometimes... opening his eyes... the OT came by and said he was fabulous (yay! another test passed!)... is still being cathed every 4 hours...had another head ultrasound today that we will hear about tomorrow hopefully. Until then, have a good evening and say another prayer for our little one. God is certainly blessing him and us so far...so let's keep up the good prayer work. :)

Good Night Everybody...

Sent From Heaven

This post is what happens when Mommy goes home to rest...and cannot stop thinking about her little angel. :) Isn't he wonderful...

Mommy Finds Her Cub

This is what David titled this collection of pictures from yesterday (Friday) - the day I was dismissed and able to go see my baby boy for the first time since he was born. I was so excited and I wasn't disappointed. He's gorgeous (and tinier than his pictures...I expected a big chubby thing...and there is some "chub" there but he is still a little thing.) I fell in love with him all over again...

I was so happy to have the pleasant surprise to be able to hold him. Not quite the way I wanted to...but he is still healing and has to be on his tummy. So of course I'll take anything I can get! I cannot wait to snuggle him closer. He is so sweet and soft and warm. 

Mommy will help you find your paci baby! He loves it. :)

Peek-a-boo! That's all the eye action we get so far. :)

Jet's First Bottle

I've been blessed to be able to have some pretty good success pumping my milk/colostrum since Jet was born. I've been sending it over with David and on Wednesday evening (post surgery) the nurse fed him his first bottle of "mommy's special milk." hehe. It's so precious! This is my favorite movie in the world now. :) It should win awards.

Since the video he has been eating pretty good (but he is still groggy from his medicine which slows him down some). I am leaving the hospital today and going to see and hopefully hold my baby boy (on his tummy still of course). David brought his camera and camcorder so we are set to capture every moment! We are so excited! Even more blessings - the doctor just called and Jet's second head ultrasound showed no additional swelling - the ventricles are still stable! Of course they will be still be watching him and it can still happen but we are SO happy to hear he is stable. His incision is healing nicely as well and he is sleeping soundly. Going to see him soon! Praise God. :)

Post Surgery Update

Yesterday - sleeping in recovery after his surgery. Look at that giant pacifier! lol.

Baby Jet is two days old today! :) It seems like forever since I saw him in his little bed being wheeled away to his special ambulance, but at the same time time is flying by as I realize I never updated after his surgery yesterday. Updating is a little more difficult when you're recovering from major surgery. In so many ways I'm floating on air - so in love with my little boy and feeling wonderful. But then I move to sit up and I am greeted with soreness and a dizzy feeling that keeps me from staying up for long. Well as my good friends with SB babies can relate... I feel like we still don't know anything! We know he is doing well (vitals are strong, he wiggles around and moves his legs and has good head control already) and sleeping well and eating pretty good so far. 

Here he is yesterday after his surgery.

*** Further on in the post are some pictures of the surgical area on his back. It's not pretty so if your squeamish you may not want to linger on the pictures below.***

The neurosurgeon says the surgery yesterday went well (don' t you love that word "well") and had positive things to say about the location of the SB (l5, s1) - low is good. He did tell us that because of the size of the opening in the skin itself  (around the SB opening) they had to make some larger incisions in order to stretch the surrounding skin to close up the exposed area. This sounded scary to me...not having enough skin to stretch...and painful as I thought of my precious baby, but other than a possible longer recovery the doctor did not seem to think there would be problems. However it did make for a very harsh looking y-shaped trail of staples in our little boy's back.

These pictures are not typical baby photos but David and I found it so helpful to see ANYTHING related to SB and the surgery when we were first diagnosed that I wanted to post it for any mom's and dad's out there expecting a baby with this little "extra" in their lives. :) I've heard from David that the pictures look worse than the reality and that today it's even less swollen and bruised looking. Although I still think he is the most precious thing ever.

David just called me to say that he spoke to another doctor and nurse who had the ultrasound results for Jet's head ultrasound last night and his bladder/kidney test this morning. Everything looks good so far. No further swelling on the brain at this time (praise God) and they will check it again tomorrow. It is very good news that we have avoided fluid on the brain this far. We still know it is a very real possibility that Jet may still in time need a shunt, but every day that he doesn't is a chance he won't have to so we are happy. His bladder is working but not yet emptying fully on his own. They don't know yet whether this is temporary weakness because of the surgery or a more long term issue so they are just waiting and watching. Kidneys tested fine. Breathing/lungs are great. He is sleeping soundly and his back is healing "remarkably well" for the size of the incision the doctor says. No problems so far. Go baby Jet! He is so strong and such a fighter. We will let you know of any news as it comes. Thank you again for your prayers and encouragement. I hope to post a video of him taking his first bottle last night as well as some new pictures from today's visit. 

David is doing a fabulous job taking lots of pictures for Mommy! 

I love seeing my little boy!