Finding our groove.

Everyone is gone now and so Mitch and I are trying to find our groove and create some kind of schedule.  I guess we already have a schedule seeing as though we cath and feed PJ every 3 hours.  Although, PJ has been a litle bit pushy on the feeding part...3 hours just seems too long to wait! :-) I don't mind, I like being needed by him!
This morning Mitch and I woke up early to go to a place called Crepe Vine for breakfast.  It was a little too froo froo for us and we are actually now eating in the cafe at the hospital...haha.  Oh well.  Yesterday we were able to get away from the hospital for a bit and go to Target.  You don't know how comforting a place like Target can be!  It's a little escape from the hubbub from the hospital.  I do stress myself out on our way back wondering if PJ is hungry and stressing that he is fussing and I am not there for him.  So, we try to keep our trips (when we do make them) close and quick.
Yesterday PJ had an ultrasound and it showed that his ventricles are still looking great!  Praise the Lord!  We were able to watch the ultrasound and Dr. Gupta actually showed up while he was getting it done and we got to talk to him (he is the pediatric neurosurgeon that did PJ's surgery).  He said that his incision is looking good.  There is some puffiness from fluid building up around his incision so they are keeping an eye on that.  Please pray for that specifically.  I'm not sure what they are going to do if it gets worse.  We are waiting to talk to the nuero team again to ask them that.  Right now that is our main concern.  And also that his ventricles remain stable. 
Last night when we came back from dinner, we walked into the wing he is in and he was missing!  It made my heart skip a beat because we weren't told that he was being moved!  They moved him to the north wing which is the wing for the "well babies" because they are transitioning babies to get ready to go home!  Which we have been told may be next Tuesday (only one week from today!!).  We can't even begin to describe our yearning to come home and be "normal".  It's tough being here everyday.  When we finally made it to our new "home", we were able to give PJ a bath for the first time.  He's had a bath already but we weren't able to give him one ourselves.  Oh my, what a delight!  He absolutely loved it!  I should have decided to feed him before bathing him because as soon as that warm towel was wrapped around him, he was out like a light for the night!  Mitch was able to spend some cuddle time with him...I must admit, I was soooo jealous!  All I wanted to do was rock him and smell his sweet skin!  The nurse even put him in his very first shirt!  He hasn't worn any clothes yet, so I have to say, he was looking pretty handsome in his white shirt!
Ok....now to the good part...pictures!  Enjoy!

Here's PJ's incision...it's actually looking good.  But you can tell there is some puffiness around it.  The redness is normal, kind of like a birthmark for spina bifida babies.

Looking at mama.

Enjoy the video!



Looking at daddy.

 Getting his ultrasound. He was so good!

 Starting his bath!

 Washing his hair.

 Rinsing out the suds!

 He loved having his hair washed!  Doesn't it look like he is so relaxed?!

 Like I said, out like a light!

 Look at those precious feet!

 Spending some time with Daddy.

 Good morning sunshine!  Looking at mama!

 Wide awake and content after eating.

I could do this all day long!

I hope you enjoyed the pictures and the little video.  Please continue to pray for PJ and for his healing.  We want him to heal w/o having to have any sort of intervention in doing so.  There are so many babies here that are truly sick and it makes us so thankful that PJ is such a healthy baby.  He just has some physical issues that we have to deal with.  There are so many things to be thankful for.  Yesterday there was a baby behind me that was in really bad shape.  The dr.'s and nurses were breathing for him and working on him while his dad just stood there, overwhelmed and scared.  I felt guilty, rocking PJ and feeding him.  We are so blessed to have this amazing baby who is in such better condition than a lot of these babies.  God is so good and we have to praise Him everyday for it.  I can't believe we would ever doubt God, especially now after seeing how He is in control and He has our best interests at heart.  Thank you for your constant prayer for our family.  It means so much to us.  We love each of you.

It's a bird, it's a plane, nope, just the Blue Angels!

So for those of you that don't know each year around this time is something called Naval Fleet Week. So that I get it right I'm going to borrow from the Internet encyclopedia that is the best thing ever: Wikipedia.
"Fleet Week is a United States Navy, United States Marine Corps and United States Coast Guard tradition in which active military ships recently deployed in overseas operations dock in a variety of major cities for one week. Once the ships dock, the crews can enter the city and visit its tourist attractions. At certain hours, the public can take a guided tour of the ships. Often, Fleet Week is accompanied by military demonstrations and air shows such as those provided by the Blue Angels." (Source: http://en.wikipedia.org/wiki/Fleet_Week Taken 10/10/11) So I know that citation isn't correct for the MLA format or APA for that matter. Please forgive me its been a while since I've had to document a source.

Ok, back to my tale. So Daniel loves all things police and fire related because they are so big and loud. He loves parades and the like. I thought as Daniel was getting ready to leave it might be a nice reprieve from the routine he had gotten into here in San Francisco. Daniel, his cousins, Heather's brother, and father all piled into Andy's ultra cool super high tech-Minivan and headed north towards the water.

San Francisco is confusing with a GPS, I've gotten us lost a couple of times with it on and functioning properly. Sorry to Alan and Karen for that. In combination with the GPS we headed North and just wanted to find a place to pull over. And boy did we. If you get a chance look up the San Francisco Presidio. What a gorgeous location. The San Francisco Presidio was an old fort established in September 17th, 1776. The old buildings were cool and looked to be about WWII era. There were old cannons and cannon balls on display as well. Most importantly it was Saturday so parking was FREE! Parking down here costs an arm and a leg if you can find it. (For those of you that know what or where Fort Snelling is in MN this is similar. Just with the Pacific Ocean as a back drop instead of the Mississippi River.)

After we parked we walked toward the beach and as we rounded a corner I realized where we were and I was pretty amazed. To my right was the iconic Alcatraz prison. To my left, 5,000 yards or less, was the towering, and even more iconic Golden Gate Bridge. This is our third time to SF and Heather and I have yet to cross it and for the most part we haven't seen it very clearly due to the fog or our location in the city. So I was excited to be this close. As if that wasn't enough about twenty minutes after we got there a big, older plane starts a rumblin' through the skies.

This gorgeous metal bird is a C130 Hercules plane dubbed "Fat Albert."

Our view for the show.

So after Fat Alber warmed up the crowd it was time for the big dogs. And boy, oh boy, they did not disappoint. The Blue Angels, the elite of the elite, went back and forth through the sky. Up and down on a roller coaster of loops, twists, twirls, steep climbs only to be followed by steeper dives. It was something else just to have seen this on my own. That would have been cool on its own. I had something better. I had my son with me. That is an automatic joy multiplier. For those of you that aren't around Daniel on a daily basis you're missing out. (Disclaimer: I might getting off on a rabbit trail bragging about my son, cause I'm so proud. Sorry in advance.) So Daniel is one of the most exuberant children I've ever known. He's so smart and always discovering new things daily. What never changes is his enchantment with machines and the things they can do. So to watch him react to each time these planes would simply fly by and make a loud noise with their afterburners was a pleasure for me. I was explaining to someone that while they were practicing on Friday they would fly over the hospital. While Daniel and I would go on walks he would hear them coming and watch them fly over. His reaction was priceless. His screams of "whoa," or "ooooooooooooooooohhhhhhhhhhhhh, yeahhhhhhhhhhhhhhhhhhhhhhh!" were bordering on guttural noises and primal animal screams of excitement rather than intelligible words. I think his voice might have dropped a few octaves on a couple of the growls of glee. (K. All done, back to the blog.)

After about an hour of craning our necks and getting whiplash while whipping around as planes whizzed by it was over. We drove home through the Presidio in nearly stand still traffic due to the volume of people. This wasn't bad either because the streets were lined with TREES. Eucalyptus trees no less. They were so fragrant it was a nice change from Nevada's high desert landscape. Finally back to the hospital.

The day was done and back to reality. It was nice to take a break and take time to let Daniel know that in the midst of this I still care. I still enjoy his company. And most importantly I still LOVE just hanging out with him.

Ok this is getting really long and I think I was supposed to go join Heather in 10 minutes, who is nursing PJ, like 20 or maybe even 30 minutes ago. Ooops. Sorry Heather. I know that Heather was planning on putting up more pictures of PJ and doing an update later today so look for that as well. See you guys the next time I post.

And if you haven't figured it out this is Mitch writing not Heather. 

Daniel on the beach side just before the show.

The Blue Angels flying in formation over the Golden Gate Bridge. So Cool!

The beach was packed for the show.

The Blue Angels flying in formation.

If you listen close towards the end you can hear Daniel's excitement.

Daniel and his cousins after the show. Believe it or not this is his serious face. And I absolutely love it!



6 days old already?!

Hello everyone!  What a couple days we have had!  Sorry that we haven't been able to update in a couple days.  Things are nutzo and it always seems like when we can update we don't have enough time or we don't get wireless internet.  Mitch and I are sitting in the cafeteria at the hospital (it's around 7:00 am now) drinking coffee and eating donuts.  We just came down from the 15th floor where P.J. is.  I fed him and was able to get an excellent snuggle session in for about a half hour.  Man, I could hold him all day long!
I got discharged yesterday afternoon...which took FOREVER!  I was so ready to breathe some fresh air!  After getting discharged we went and at lunch.  I started to get stressed out because it was getting time to nurse and we got a little lost on our way back.  Needless to say, we will be sticking around the hospital from now on!  We checked into our Ronald McDonald house last night and did some laundry.  We were so exhausted, but couldn't go to sleep because we had to semi-unpack and I had to pump.  We didn't get to bed until after midnight.  I woke up around 4 to pump, again, and we got back to the hospital by 6 to cath/feed P.J.  We haven't been getting much sleep, but hopefully we will get into some routine where we will be getting more than 4-5 hours of sleep.
P.J. is doing good.  He has had an ultrasound on his head to monitor the fluid between his ventricles and he is looking good.  They said "microscopic" changes...which is good news.  His head circumference isn't changing which is another praise.  However, the fluid needs to drain somewhere and since it isn't draining in his head, it has started to drain around the incision.  It has been building up around there, so the dr. is monitoring that very closely.  He may still need a shunt placed if the fluid continues to build up in his back.  So, we'll see.  We aren't sure when they would determine yes/no on that. 
Cathing is going ok as well.  Mitch is doing so good at it.  I, on the other hand, am struggling at it.  Granted, I've only tried 2 or 3 times so far, but I am just taking a little longer to get the hang of it.  I'll get there.  P.J. doesn't even make a peep when you are doing it too!  That makes it a lot easier to do. 
Breastfeeding is going well.  The only hurdle we have to cross is P.J. falling asleep w/in minutes of latching on.  He freaks out until he is eating and then he passes out once he starts.  So, they are supplementing a little bit to keep him satisfied.  He is quite the eater...go figure! :-)  So, just pray that breastfeeding continues to go well and that he would stay awake for it!
His incision looks good.  It is about 3 inches, vertically, on his lower back.  It is a little red from stretching a healing, but the dr.'s say that it looks good.  We took pics of it, but I haven't decided on whether to post them or not.  They aren't easy to look at, especially on a little baby's back.  We'll see.  I'll wait to post them for now. 
Daniel has been such a great big brother.  Everytime he gets to the hospital he is bursting at the seams to see his brother.  He likes to caress his head, touch his little fingers and check out his toes.  We really miss Daniel and being around him all the time.  We have really enjoyed having him here with my parents.  They are going home tomorrow and let me tell you, we are dreading it.  We miss Daniel so much when he isn't with us.  I know that he really loves to be with my parents, so that helps, but it is hard not having him around!  He is our entertainment and our source of snuggles!  Hopefully we won't be very far behind them going home.  We are hoping we only have a couple more weeks here.
Ok, I suppose I've made you all wait long enough for some more pictures!  Please continue to pray for us and especially for P.J.  Pray that we wouldn't have to shunt him (not the end of the world if we had to), pray that his incision would heal quickly, and pray that we would continue to get guidance from the dr.'s with everything; his back, his head, his foot/leg, physical therapy, etc.  God has been so good.  He has been so faithful to us during this time.  There are so many ways that He is blessing us right now!  Although it is a tough time, it is so great to know that God is in control and will continue to do His will.  He has been a source of comfort and strength during this time and we can't wait to share with all of you someday specific ways in which God has provided and given us hope.  Praise the Lord for lessons and learning experiences.  Even though these lessons that we are going through usually aren't fun, they have become accepted and appreciated.  We are thankful.

Getting held by Daddy sure is nice!

Saying goodnight last night was not easy!  But, just look at how peaceful he was!

Taking an afternoon nap.

Right before discharge.

Look at those lips!

Daniel loves P.J.  He is so gentle with him and can't wait to see him everyday!

This was taken this morning...Love love love snuggling him!

 This morning he was awake and more alert than ever!

Pictures to hold you over!

Here are some pics from today.  P.J. is doing really well.  I have been able to breastfeed him and he has been doing really great.  Tonight was a little struggle, but we will get there.  He's lost 1 lb. already so he's not double digits anymore...probably not for long once he starts eating like a champ.  Mitch is working on uploading a video, but it's taking F-O-R-E-V-E-R so we might not see that until the morning. :-)  Enjoy the pictures!  We'll do a more detailed update tomorrow.  Goodnight!

P.J. relaxing on his belly.

The view from the ICN...not bad huh?!



Flowers from Minnesota family!  Aren't they beautiful?!

Mitch just finishing cathing P.J. for the first time...Mitch is a pro!

Giving P.J. a little love after cathing.

I did the hard part...taking his temp...:-)



Two handsome men!

I had to get a picture of him in his new hat!

Updates!

Heather here!  I thought that I would do a little update while Mitch is on the phone with his mom.  It's time I take a break anyways.  Taking a shower sure does a number on ya!

Here's a pic of PJ before his surgery

Daniel checking on baby brother.  He was so excited to see him today.

One rare shot of him opening his eyes...even if it's just one.

Couple hours after surgery...totally zonked.

Made it all the way down there and he's sleeping...we'll go back later tonight!

PJ got his surgery today around noon and we finally heard from the pediatric nuerosurgeon around 2:30.  Everything went well.  They were able to repair his back w/o having to call in plastics having to intervene with doing a skin patch.  Now, we wait.  They are monitoring his ventricles closely now because now is the time that things would increase and could get worse.  They'll do an ultrasound on his head at the end of the week to get more accurate measurements.  Also, his right foot is clubbed if you haven't noticed from the pictures.  This is something that is totally repairable with progressive castings and something that we can deal with.  It's just hard to see.  But just looking at that chunky face makes everything so much better!  He is SO precious.  The nurses keep telling me that he knows my voice because he settles down when I finally am able to get to the ICN (Intensive Care Nursery).  He actually opened his eyes for the first time for his mama last night ;-)  We are waiting for the nurses to call us so I can try to breastfeed! I am so excited!  I haven't held him yet.  I can barely contain my excitement!!  It won't be the usual cradle hold, but ANYTHING will do for me!  I've been enjoying caressing his head and back though. 
Last night was another story for me though.  Around 11pm they said that I could try getting up.  I stood by the bed and that's all I could do.  It was too painful, plus I almost passed out.  Needless to say, the hormones kicked in and I think I scared Mitch with all my blubbering. I was just really looking forward to seeing PJ and I was just so disapointed.  We slept a few hours last night and I finally was able to walk a little bit this morning around 6:30 I walked halfway to ICN and got wheeled the rest of the way.  But, man, was it worth it!  The rest of the day, things have gotten a little easier, but I am trying not to do too much because I know I'll regret it.  But I feel like I am making good improvements.  Hopefully tomorrow is even better!
Here's a video for your viewing pleasure:

Thanks for all your prayers.  Of course we will continue updating the blog.  We appreciate each and every one of you. 

Paul Jarrett is HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Paul Jarrett Hinton was welcomed into the world at 1453 hrs and weighed in at a whopping 10.9 lbs and 20 inches long. He seems small to us because of Daniel's birthweight at 12.2 lbs. PJ is scheduled for his closure surgery 10/4/11 at 10ish. (More on that later)
Heather is doing good. Her C-Section was routine and uneventful. Which is great. I'll blog in the morning or afternoon, but this should hold you blog junkies over till we can add more tomorrow.
Love you all!
Later!