Bundled Up and Moving

Steven here...

Last night, Jamie and I went to tell our sweet angel good night. While resting her head on the top of the wall of Ellie's bed and holding her precious daughter, Jamie dozed off. Just as she left the NICU, Lisa (Ellie's nurse last night) decided that Ellie had been just irritble enough already though we could bump up the midnight "touch time".

We didn't have a poopy diaper, but that was ok. Lisa checked Ellie's stomach contents and her 8:00pm feeding hadn't digested yet so it was just a matter of waiting. Lisa mentioned that she would swaddle Ellie, as she likes being bundled up. In addition, it would keep Ellie's hands from grabbing her ET tube (intubation) and her feeding tube.

Just before I left the NICU, Lisa mentioned that Ellie was doing so good she might adjust her vent to 25 breaths per minute and 25% O2 around 2:00am. She thought Ellie was ready for this and it was yet another step in the right direction.

At her 4:00 "touch time", Ellie had a LOADED DIAPER. Yet another pleasure that just seems so odd.

Jamie and Janice took a peek early this morning before Janice headed to the office; she'll be back around noon or so. I woke up upon their return and heard the joyous news. Lisa had in fact adjusted the vent as planned and Ellie was responding famously. Another step in the right direction!!!!

The moving part of the title is that we are ending our stay at Hotel Deaconess today. They have not booted us out, nor have they mentioned anything about us leaving. We just feel it is the right thing to do. And, we are at peace with it. Mostly because Janice's boss, Ricky, is loaning us his 5th wheel trailer and we will be staying just behind the hospital in the RV parking. It should be A LOT more comfortable than a delivery bed with a mattress that is more like a stiff pool floating device, a roll away bed that is so springy a large man might sag to the ground, and a pullout couch that is more like a piece of ply wood with a 1/2" of worn out foam matting. Not to say I am ungrateful for our accommodations, but, our body's are pretty worn out and need a little more support. So, HUGE HUGE HUGE thanks to Ricky!!!

And, just in case you read this, Ricky, Jamie would really like it if you let her Carson (our Corgi) come stay with her in the trailer! Just kidding...she does miss her Carson Bug though.

All in all, another great start to a gift of a day.

This is the day the Lord has made, we will rejoyce and be glad in it!

Answered Prayers

Steven here...

I know, I know. The updates were coming fast and furious; but we reached a point where no news was good news (the night before last and over the course of yesterday).

Yesterday there were few changes really. Not so today!!!

Early this morning, Jamie and Janice went to see Ellie and even saw her Dr. He noted that everything looked good and that he thought the chest tube would come out today. He also noted that her "tanning bed" would be discontinued.

When I went in for "touch time" - translated as poke, prod, test, adjust, and diaper change - I changed her diaper. This is one of the oddest things in my life I've ever gotten excited about...but, here goes - after 4 days IT WAS POOPY!!!!!!!!!!

No one was genuinely concerned, etc. but she was about to earn herself a stimulating massage or suppository(sp???). NO NEED! It was a full diaper.

As I sat there staring at our little miracle, I notice her nurse (the FABULOUS Angela) gathering some medical trinkets and tools. The thought immediately hit me, thank God Jamie isn't in here. It was time.

So, I "assited" on my first medical procedure today. I held Ellie's legs and her right arm as Angela worked to remove the tape holding her chest tube in place. Once that was done, I held my breath and baby. Angela pulled and it was over.

THE CHEST TUBE CAME OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And Ellie is LOVING it!!! She's awake and alert. We got to talk to her, tickle her feet (just a bit), kiss her, and put lotion on her dry and chapped little skin, hands, legs, and feet!

While writing this post, Jamie made a quick trip to the NICU. Upon her return I learned that Ellie was doing so good and her 4:00pm blood gas results were so good that they turned the vent breaths per minute down from 40 to 35 and her oxygen down from 30% to 28%!!! Another answered prayer and blessing!!!

Ellie is well on her way...we have to remain patient though.

God is good!!!

Spring Snow and Scare

Steven here...

Well...the morning started out just like the weather man here in OKC. It looked like it was going to be something of a bad news day (or a giant winter storm that was going to cripple the city and state causing the Lt. Gov. to declare a state of emergency in advance).

Then the Dr. came in, had another chest xray done, took a good look, etc. (decided to sniff the dirt like Bill Paxton in Twister or Gary England in the "olden days" as opposed to rely on computer models). What he found brought relief and smiles to my, Jamie, and Janice's face...he ventilator tube had worked its way down too far and was giving Miss Ellie some fits (or a little dusting of snow in lieu of 14"). I'm sure part of this is because clearly has a fun time sucking on the tubes. Maybe that's a bad thing - I don't know as I wasn't smart enough for med school (like my cousin JK and his fiance Katie (who is about to start PA school), or even his sister Regina who is a labor and delivery RN) - BUT this father chooses to believe that it is a good sign, an indication that she knows that when something is in her mouth it is there to suck on and swallow...so maybe learning to eat won't be so tough. But, we'll figure that out when we get there.

So, bad news, like the crippling snow storm, has been averted for now. It was actually a nothing. That said, I'll take the prediction of 14" of crippling snow and shutting the city down for a week (or whatever) over the fear and anxiety of the human mind leading us to think there was a setback in store today. Maybe there will be, I don't know; but I'm going to stay positive. Afterall, this little girl is feisty!!! She was reaching up trying to help the Dr. move/adjust the vent tube!

It'll be another good day...God's too good to us all to not be!

I Wear My Sunglasses at Night

Steven here...

I know, I know...it's been a while since an update. BUT...that's a good thing. Though the updates today were few, the work that went into them, and how much it took out of Ellie, were actually pretty intense. And she perservered like the finest of soldiers!

Mid-evening, we got an unofficial word from Jay (who performed her EKG) that her PDA defect (that allowed blood to bypass re-oxygenation in the lungs) appeared to have closed itself off!!! We all believe Jay and think the cardiologist will say the say. Her PFO heart defect (the other source of her murmur - I think I mis-abbreviated it earlier) is still present, but could possibly resolve itself as well. My impression from Dr. Tolentino was that is was a concern, yes, but a somewhat lesser one than the PDA.

Ellie enjoys her tanning bed! It's making her better (preventative maintenance for some jaundice)...and she's getting a "tan"! Now, it'll be really hard to make her understand in later years how I could justify this tanning bed exposure, but will be SOOOOO opposed to her laying in a tanning bed "because".

The insertion of the PICC line takes (a) a lot of sedation and (b) a lot of energy out of a little bitty girl. As such, it's not surprising that Ellie's O2 level had to be bumped up to 40%. That's ok for a couple of reasons: (1) it helps calm her down a little bit and rest easier and (2) late this evening her arterial blood gas report showed her O2 was a little low. It's a little step back on a big step forward day; well, really it was like a little hesitation in the step forward to make sure her footing was sure. When I saw her about 30 mins ago, her O2 level was back down to 38% and they planned to leave it put over night. At the same time they bumped her O2 up, they increased her breaths per minute (BPM) from 35 back to 40; this was short lived as they felt good enough about things to lower her BPM back to 35 around 7:30 or so.

So, she's resting quite comfortably and all is well. For tonight, no news is good news as we look to wean her O2 boost back down.

***UPDATE 2:30PM March 19, 2010***

Praise report!!!

PICC line insertion went smoothly!!!! Dr. Tolentino believes it is in a good location and no issues face us. Reconfirmed the collapsed lung is no longer collapsed and looks to be in good shape!

Ellie's O2 is still somewhere between 28-30% and the breaths per minute has been dialed down from 40 to 35.

Another blessing sent our way; thanks be to God!!!

***GOOD NEWS UPDATE***

Steven (for Jamie)

Today has been a good and blessed day so far!!!

This morning we awoke to the fairly rough realization that we were scheduled to go home without our precious angel. In fact, it was hitting Jamie really, really hard. Not a surprise; it's tough enough as a father, but I am not sure that I, or any guy, can really ever understand the emotions or, some form of, guilt that go into growing/delivering a baby that isn't just "perfectly normal". But, it wasn't long before the good came along to wash away the bad!

Ellie has been doing good (the same) overnight. They moved her ventilator down to 40 breaths per minute late last night. At that time, her O2 was set at 25% (just 4% over plain air we all breathe). Her nurse, Lisa, was under some instruction from Dr. Tolentino to see what she could take and have much Ellie was ready to step forward. The lowered her ventilator O2 all the way to 20%; which she didn't like too much. So we went back up to 28%, but that's just fine!

While lying around awaiting our impending "doom", Jamie (Ellie's nurse today) came into Jamie's room and said "Why don't you guys just stay here over the weekend?!?" Jamie L. had a BIG grin on her face when asking this; and Momma Jamie LIT UP...BIGTIME!!! So, that's good news number 1. We don't have to fight "the great blizzard of Spring" to come be with our angel. Not that a little snow would have stopped me!!! So, while officially discharge, the wonderful, truly wonderful, people here at Deaconess have made room for us right by the NICU - 232.

Now for an even better note!

Ellie has being doing SO SO SO GOOD that they removed her (unsightly) umbilical IV. They said from the beginning that it didn't go just where they had hoped so it wasn't of much use and that was ok. They also told me that it didn't hurt in anyway because they are no nerve ending in the umbilical cord. Of course, thinking of how sensitive belly buttons are, I just thought it looked like it hurt so, Daddy was plenty happy it was gone!

Tthe best note (so far...as we believe and pray God has more in store today)!

ELLIE's CHEST TUBE HAS BEEN TURNED OFF OF SUCTION AND SET ONLY TO WATER SEAL!!!!!!!!!!!!! This means everything is holding and working just like it is supposed to and her little lung is staying inflated well enough that soon she won't need the tube!!!

So much for a short update!!! But, I don't really care...I'm still over the moon with that little girl (and her Momma too)!

While typing this, Dr. Tolentino's nurse practitioner Julie came in. They are bringing Ellie a "tanning bed" to thwart any jaundice that kind of looks like it is starting. Gonna do another EKG later to double check Ellie's heart murmur. They just want to monitor her duct to make sure the opening is staying small; if not, they will administer some medication to close it. All is a-ok.

My favorite time of day....visiting with my sweet girl!!!

Not the best picture but making sure Miss Ellie can suck and swallow with no problems and she can!!! If you read her Daddy's update emails you'll learn this is before she started having breathing problems. You can see all her little light blond peach fuzz hair. It sure doesn't look like there is much but there is it's just SO SO light!

My last belly picture with my mom. Please disregard the terrible face puffiness....it had needless to say been a long day! I am amazed by how quickly my belly has disappeared. It by no means looks the same but even the doctor yesterday said holy cow did you really just have a baby. Hopefully one day it will look the same again. However, I would do it all over again for my sweet angel!

As she grows stronger and we have better pictures to share I will definitely do so. We do have some but it's hard for us to see her the way she is so we know not many people want to see that! It's 'hands on' time so i'm off to visit my baby and change her diaper......who would've ever thought that would be your favorite part of the day but we will take all we can!