Still in Baltimore...

Millie was discharged from the hospital this past Saturday, which was great! However, her SP tube is showing too many residuals. (We check it every two hours) Her diapers have been somewhat wet, but with all the residual drainage the Dr. couldn't take out the SP. She has a procedure scheduled for tomorrow morning to scope the urethra and bladder to see what the issue is. NOT happy about this. She'll go into the OR around 6:30am, and hopefully everything will be finished before lunch and we'll get some answers. Unfortunately the Urologists couldn't say if she'd have the SP tube after this procedure or not (It has to be pulled before we can go home). So we're still in the dark as to when we'll be heading back to Texas.  **Sigh**

Out of traction!

Millie's pins were taken out early this morning at 630! She is doing great and will hopefully have her IV taken out later this afternoon.  Millie's bed was switched out for a crib :) which we love, but she doesn't like one bit! Maybe it's being held, but as soon as she gets laid down she starts crying. So we've been lapping the floor in her wagon, and she's sleeping in it right now :)
Her stents will be taken out tomorrow and her SP tube will be capped off on Saturday, then we are discharged from the hospital! We have Sunday free to lounge around at The Children's House, then on Monday we'll have a quick appointment at the clinic to have her SP tube taken out. After that, we'll be ready to head home! Oh man! It's really exciting that we've finally made it to the near end!

Daddy's first time holding Millie after pin removal!

Millie's first wagon ride. 

:)

We're almost done!

Millie gets her pins out on Thursday. Friday both of her stents will be taken out, after an ultra sound the remaining SP tube will be taken out on Saturday, and then BAM we'll be done :)

They told us we should expect to be cleared by the end of the weekend or early next week! We are so happy :D

Busy weekend!

We've had an awesome time visiting friends at Ft. Belvoir and having my Uncle Joe come down to see us and meet Ms. Millie!

Can't wait til Thursday when Millie's pins come out and we can finally hold our little chunker!

Came in and Millie's head band was over her eyes :P 

Fixed it and she went right back to snoozin! 

Representing her team :D

On the downhill slope...

Millie gets her epidural out tomorrow which is the first step in weening her off her pain meds! Also, Urology came by today and let us know that Millie will be getting xrays the beginning of next week and we should expect her pins to be taken out on the 27th! So happy that we're getting closer to getting outta here!

Yoda baby

Finished the Yoda hat for Ms. Millie :)

Hopefully 2 more weeks!

Well, Ms. Millie is chuggin' along :) She has been able to keep her feedings up and is still NG tube free! Her IV became infiltrated  so they had to discontinue it, and put another one in her left hand. We got her a special pillow made to help take some of the pressure off her head. The "team" is looking at taking  her x-rays 2 weeks from now, once they do that the pins come out! --and I won't be leaving that hospital room! Me and Millie have 6 weeks of missed cuddle time to make up for :p and I guess Austin can hold her too ;)

 Here she is with her new head pillow! It took her some time to get used to it! 

I am in the process of making Mills a Yoda hat. This is the crocheted hat; I have the ears done but haven't attached them yet... Hopefully I'll finish it today! :)

Another day...

Millie has been struggling to meet her feeding goal today. Hopefully she'll be able to make up for her lost time and reach her goal by midnight, but we're afraid that starting to get regularly scheduled Valium has hit her appetite. She needs 510mL of formula each day. Other than that all is well. :)

Family Time :)

Labor Day weekend was very exciting for us! We had a lot of family visit and had a great time :)

 Caleb playing XBox.

 Josh with Millie :) 

 Caleb and Austin. 

Aunt Julie and Josh 

Caleb being flung around :P

Oops! Lost his shoe to the harbor. :)

Dad, Cathy, and John come to meet Ms. Millie :) 

Out at The Green Turtle. Pretty decent place. d

Austin and I on the water taxi. A lot of fun!

USS Constellation 

9/11 Memorial, with steel from the World Trade Center and limestone from the Pentagon. 

Donna and Millie! 

Our wrinkly hands side by side :P 

Wiggle, Wiggle, Wiggle...

Ms. Millie has been more and more active, which unfortunately isn't good for healing. So she'll start getting valium every 6hrs, and some another as needed. Other than that she is looking wonderful.

We have lots of visitors this weekend! :) Pictures to come :D

Matt meets Millie !

Austin's good friend Matt got to stop by and see Millie for the first time :)

Trying to get fat :P

Right now Millie's only challenge is eating more, and we're seeing a really big improvement already! We're confident that we'll be able to stay away from a feeding tube :)

No picc line for Millie

Millie went back to the OR today to get her PICC line put in. Well, after 3 hours there was no luck! The PICC nurse was pretty disappointed and said she'd not had this much trouble in a very very long time. The doctors decided to just keep her IJ central cath where it was, rather than attempting to put in an indwelling catheter. Other than that she is doing good, and should be waking up from the anesthesia soon :)

New Toys :)

Millie got an overhanging arrangement to keep her entertained! Seems to be doing an alright job so far :)

Millie has had a great day :) She's able to try and feed and is taking it well :) Getting more and more active each day!

Austin getting some one on one time with the Millster :) 

So Millie got moved up to the Infant Care floor today :) Hooray! and she is now off the oxygen and no longer has her NG tube in, so we can see that pretty face! We're working on getting her entertained. She is loving her mobile and baby einstein. :)

wide eyed :)

Had a fun time chatting with Millie earlier :P She is looking good, and we'll hopefully be moved to the 9th floor.

She was actually moving her arms around and grabbing for us! Too sweet :D

Saying Hello

Millie has to be given blood and a few other things, her heart rate is still too high, but hopefully this will help. She's getting better every second and has started opening her eyes, looking around and interacting with us, and cooing. She's definitely starting to show her personality again :)

Breathing tube is out.

Millie just got her breathing tube taken out and so far so good. She is breathing completely on her own, hopefully there won't be any issues. :)

Still in the PICU...

Millie is still in the PICU. Right now they are working on pain management and we're hopeful that her breathing tube will be taken out sometime tomorrow; they thought that they might have been able to take it out earlier today, but the pain medicine she's on can cause some breathing issues. In spite of that, the levels on her respirator still have her doing most of the work and the settings are relatively low. They are trying to make her as comfortable as possible, and other than a little puffiness in the face, she looks good :)

Getting to see Millie

We finally got to see Millie in the PICU, and she is doing AWESOME! The transformation is so amazing and we couldn't be happier or more grateful for all of our surgeons here at Johns Hopkins, especially our pediatric urologist who followed us here from Texas to be apart of the operation, our families and friends. There was definitely a higher power involved in all of this.

Below are pictures of the before and after. They are a bit shocking, I'm sure, but we're so excited and want everyone who wants to see this amazing change have a peek :)

Again, thanks everyone for their continued support and encouragement!

Surgery Update

Millie is still in the OR, it's 1900, but the major parts of her surgery have been completed and were very successful. We're expecting to see her in about an hour.

Pre-Op & Waiting :)

Millie was admitted for pre-op last night, and is doing great! She got stuck a bunch while they tried to put in her IV and drawl blood, so obviously we had a pretty angry baby on our hands, luckily that didn't last long and shortly thereafter she was sound asleep. 

This morning has been a long waiting game, she was admitted to the OR around 1000. We expect the surgery to last approximately 6 hrs. 

After her surgery she'll be admitted to the PICU, we are expecting a 1 week stay there, before being transferred to the Pediatrics floor, where we'll be spending the remainder of Millie's hospital stay. 

We'll be posting pictures and updates periodically, and we hope that you find them helpful :) 

Ms. Millie relaxing in the hotel before we got admitted! 

A little unhappy after having blood drawn. 

 Austin and Millie saying goodbye before going into the OR.