Daily Dose: Thursday, March 26

Another great day for Hope!!!! Today Hope spent most of her day resting and recovering. Hope is still getting some Morphine and Versed which is keeping her very very comfortable. She had a chest x-ray this morning which showed improvement from yesterday's x-rays so her ventilator settings did not change.

Hope has peed off some more of the fluid she was retaining so her weight was 2310 grams today, but no worries, that is still above the 5 pound mark!!!!

Even though Hope hasn't been feeling her best lately, like a true fashion icon that she is, she did not let that get in the way of her high fashion lifestyle. Today Hope was modeling a new addition to the Hope Collection: a rockin' pink hat (brought to you from designers "cousins Kelly and Jerry"). Hope sent a special message to Aunt Em today, she said that she is truly beginning to understand how difficult it is to live in the world of high fashion and that she will need Aunt Em to teach her all the ins and outs, which obviously means A LOT OF SHOPPING in the future. I guess we can handle that.....

Daily Dose: Monday, March 9

Hope: day 92

Hope had another good day today. She has a new attending doctor that will be taking care of her until March 27th. She had no big developments, which is a good thing, today. She is still on her vapotherm and tolerating her feeds. Hope seems to be struggling a little to digest her feeds, at least more so than the last time her feeds started back up. But the doctors are still pushing forward, so she's still getting her feeds. Hopefully she picks up on the digesting soon.

Hope had some physical therapy today. The therapist worked with Hope for a while and determined that she is actually doing really well, for right now at least. Given all the setbacks and challenges she has had thus far, along with the implications of the PVL, this is really good news. This doesn't guarantee that things will be smooth sailing forever, but for today and right now Hope is doing well and we are all very thankful for that.

Now... for the update on the Biggest Fatty.... today, Hope weighed in at 1820 grams which is..... drumroll......................

more drumroll.................

4 POUNDS!!!!! Way to go Hope!!

As you can see from the picture above, the fashion show continues. Hope is modeling a cute little outfit from Mommy's cousin Kelly and her husband Jerry. Hope said she really likes this ensemble from the Hope Collection and she sends a great big THANK YOU to cousins Kelly & Jerry.

Daily Hope: Friday, January 9

Hope: day 33

Hope LOVES her pacifier, when she got it today she threw her hand up and said: "SCORE!"

Hope: day 33, caretime with mommy & daddy

Hope's foot is still a little tiny, but it's cute (and I don't even like feet)

Hope: donning a new bunny hat, posing for the camera

Hope: day 33

Hope & her pacifier

Hope's new Bling!

Hope's newest hat, another creation by Peggy

Hope got ANOTHER new hat today from her favorite RT, Peggy. As you can see, she is donning the new addition to the "Hope Collection", coming soon to a NICU near you. The bunny hat has little bunny ears that are knit in and then tied with bows. It is INCREDIBLY adorable, and Hope obviously LOVES it! She tried to hippity hoppity around the NICU today, but she couldn't get out of her isolete, bummer. She also got a blanket change so her new blanket is pink and matches her hat. Always fashionable and practical at the same time.

Hope had a good day today, her calories were increased, still working on beefing her up. Hope also got another blood transfusion today, so tomorrow she should be READY TO GO!! As you can see from the pictures, she LOVES her pacifier. She loves it so much at times she gets so engrossed in "sucking" that she forgets to do the other important things, like breathing. So we have to work on multi-tasking, she'll catch on soon.

Hope is looking so good and especially snuggly lately. Everyone can't wait for her to be able to be held and to snuggle up in our arms. Her favorite position to lay in is on her tummy with her little butt stuck up in the air. She snuggles down, her arms tucked in, her butt in the air, and her unstuffed teddy bear right next to her. And she has the most beautiful face in the world, a peaceful and blissful face that knows none of the problems the world faces outside her little isolete.

Another highlight to Hope's day today was the added "bling" to her space. Special thanks to Aunt Em's co-worker Julie for the bling. Hope was definitely missing something, now it feels like home =) THANKS JULIE!!!!

Aunt Em read Hope another story today. We read the story of David & Goliath and how David was sooooo small and so underestimated, yet he conquered the big bad giant Goliath. Hope was telling Aunt Em how she's going to conquere whatever big bad giants come her way. I'm glad that Hope is going to fight the problems off because sometimes I feel like I'm useless and helpless, but with Hope here, there is no fear!!!!

Aunt Em is rating today another solid 7. There weren't any major progressions but good maintenance, so that we are thankful for.

Now for a personal note from Aunt Em: while I spend limited time with my precious Hope, and I have yet to hold her hand or give her a hug, just being with her is amazing. I sit next to her and she radiates hope (yes, pun intended!!!). While there are lots of things that we don't plan for, in fact, lately NOTHING is planned for, that doesn't make it bad. I'm again reminded that our plans are not the plans that will happen or should happen. Given, we can control some things, like Hope's AMAZING wardrobe, but beyond that it is really not our's to control. And so again tonight, on this Friday night in my parents' apartment/house/hotel, I lean on Hope for understanding, an understanding that is beyond my current abilities but I know that someday we will all finally realize the true reasons for today.

Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out. - Vaclav Havel

Daily Hope: Sunday, January 4

Hope: day 28 (four weeks old!!)

Hope: day 28

As you can see from the pictures above, Hope is the most beautiful ladybug EVER!!! And Hope has a special message today:

Thank you Peggy for making my beautiful hat and making me a ladybug! You are the best! Love, Hope

And yes, that message was directly from Hope. As you can see, Hope is modeling a GREAT new hat. Peggy, Hope's respiratory therapist, made this special little hat just for Hope because Hope loves ladybugs. So now there is a little ladybug laying on a ladybug blanket. So cute!

With this sudden onslaught of homemade hats for Hope, I have decided that anyone out there who may be reading this, you can have a special entry that Hope dedicates to you. How does one achieve this? Buy sending your homemade hats or booties or mittens just for Hope. Hope will be so thankful that she will make a special entry just for you!! So if you are interested, just let us know! Hope has lots of days at the hospital ahead of her, so lots of opportunities for hats and other homemade apparel!!!

Hope had another good day today. They were going to be increasing her feedings, but, once again, Hope has made sure that everyone knows she is stubborn and she is in control. Hope's feedings were not increased because she was having a little bit of residual. a bit more than they wanted, so she is just maintaining her feedings for now.

Today Hope's daddy gave her a rating of 6.75. Grandpa thinks it is was at least a 6.76 but we'll stay with 6.75.

In other news.... due to popular demand Aunt Em will be returning to Indianapolis to hang out with Hope later this week. I know that Hope is excited!!!!!

Daily Hope: Friday, January 2

Hope: Day 26

Hope had a great day. Her feedings have been increased to 4cc's (yes, that is sooooo much!!) every 3 hours. She was eating 4cc's every 6 hours so her feedings have DOUBLED!!! They haven't weighed Hope recently but I'm sure that means she will be getting bigger, but most importantly stronger!!

No news can be good news, so on days when Hope is maintaining, that is GREAT!!! Daddy ranks Hope's day as a 7, holding strong.

Hope is still modeling the hat made by her favorite RT, which shows versatility, always a good selling point in a fashion show.

**Aunt Em apologizes for the delayed posting, the world was waiting**

Daily Hope: New Year

Hope: Day 25; looking so sweet and innocent

Hope rang in the New Year with style, as expected. She had another good day today. She has remained off the Dopamine, has been on room-air on the ventilator, and has continued to do well with her feedings. A chest x-ray today revealed that her right lung has re-expanded and is doing great!

Today Hope had an "interesting" moment. Grandpa would probably refer to the moment as "unlady like" at best, but Aunt Em refers to it as "blossoming personality". So this is how it went... at the end of the day, Grandpa was getting ready to go for dinner so he told Hope something to the effect of "Hi Hope, it's Grandpa, I'm leaving now, but I'll be back tomorrow. I love you." To which Hope responded with some interesting body language. First, she raised her little fist up to her cheek, then she raised her middle finger, ONLY her middle finger. To which it is most likely that Grandpa gasped or something, and then she put the same hand over her ear, covering her ear, not wanting to listen. Aunt Em thinks this is a great sign, not only is Hope overly active, but she also is blossoming with an incredible personality!! Oh, and she OBVIOUSLY knows what is going on and was a little bit mad that Grandpa was leaving and expressed her sentiments. Either way, it was definitely one of those precious, priceless moments, a moment worthy of a Discover commerical:

• 3.5 weeks of Mom on bedrest in hospital: $thousands of dollars
• Emergency c-section for preemie Hope: $tens of thousands of dollars
• Being flipped off by your 26 day old 1.5 pound granddaughter: priceless

Today, the first day of 2009, brought Hope a new look for her fashion show. Today, Hope is sporting a wonderful pink fluffy hat, designed and handcrafted by Peggy, Hope's favorite respiratory therapist (sorry for those other RT's out there but maybe if you bring the hats Hope's opinions could change).

Hope's family had some more visitors today. John & Pat Durham stopped in Indianapolis today for the SECOND time to see the family... AND they brought some incredibly adorable little clothes!!! In case you didn't hear before, John & Pat happened to be able to stop at the hospital on the day that Hope was transferred and had surgery, their presence was so helpful and appreciated at that extremely intense and emotional time.

Dad gave today, the first day of 2009, a rating of 7. Hope maintained and continued with her tiny progression forward. Also, we haven't been keeping score lately, but today would appear to be 1 point for Daddy seeing as Hope's hat is still on.

Daily Hope: New Years Eve

Hope: Day 24

Hope has had a good "maintenance day" today. She is maintaining her feedings well, so those have continued. She is still off the Dopamine, and maintained her blood pressure all day on her own, which is great!!! She had another x-ray of her lungs and it showed good news: her right lung has expanded!!

While Hope did not have forward progress today, she also didn't have backward regression, so today was a great day for maintaining. Daddy has rated today a 6 or 7 on the Hope Day Scale.

Hope's Mom & Dad had visitors today, Paul & Kristy Worfel for the morning and lunch then cousins Hester & Kathy in the afternoon. Great to have visitors, but unfortunately Hope hasn't seen any of them, but it is good for her mom & dad, and grandma & grandpa.

As you can see, the fashion show has resumed. Hope is sporting a green and pink hat, courtesy of her fashionista Aunt Em. She looks like she enjoys this hat, it goes well anytime of year, can be worn alone (obviously), or with a pink camisole, or a green tank, the list can go on and on.

While we are passing from 2008 to 2009 I have reflected upon all the good (and bad) things that have happened this year and decided, without a question, that Hope is the best thing to have happened. While personally I'm pretty excited about our President-elect Barack Obama, Hope has won out. If you are out and about celebrating the New Year, please take a moment and make a toast, a simple toast: To Hope.

Daily Hope: Sunday

Hope: 3 weeks old holding Mom's hand

Hope: 3 weeks old with her unstuffed Teddy

Hope did not have as good of a day today, but she is still holding her own.

The good news: yesterday's feedings went really well, she digested everything, had good "output", and seemed to go well.

The not as good news: today, Hope was having more problems getting her pH to balance. It was coming back up a little, but still has to level off a ways. Her lung seems to be doing much better, but.. She was put back on the jet ventilator. The settings on the jet vent were weaned back a little bit, but with all the other stuff going on, the jet vent seems to be the better option right now. Hope's blood pressure was a little off, so back on the Dopamine she goes. Because she's on the Dopamine, she isn't feeding anymore, and probably won't for a few days until things get normalized. We don't want to overwhelm the little one!!! She had two more blood transfusions today. They keep drawing her blood and when you only have a little to begin with it makes a big difference, so she gets transfusions so help her feel better.

The bad news: (brace yourself).... The fashion show did not continue today!!! GASP!!! I know, shocking, but... they didn't change her hat, so.... it is my hope (pun ABSOLUTELY intended) that the show will commence tomorrow with a new little number =)

Aunt Em left today around noon. It was very very hard for me to leave my precious little Hope behind, but I didn't think it would be good to take her with me. I would have preferred to stay with her, but Grandpa and Grandma said something about Aunt Em having to pay bills, or something silly like that. Hope didn't understand that either. But... Aunt Em will be visiting very soon, hopefully within the next two weeks. It is very hard to be away from Hope for too long. She has this contagiousness about her, the good kind of contagious, the loving kind. If you saw her, you'd love her too!!!

Hopefully tomorrow will bring new fashion and a good day.

Today's rating on the SCALE:
Hope's Day rating: 5
Daddy's stress rating: 5 (says Daddy, however, I think that is averaging the overall day together)

Hope: Day 20

Hope: Day 20; laying on her OWN ladybug blanket with a new hat

Hope's First Feeding!!!

Hope had a great day today (rating from the scale will begin tomorrow). Last night she was getting too much oxygen, hard to believe, so they took her off the jet ventilator and put her on a conventional ventilator. She responded very well and today was eventually weaned off the oxygen and was breathing room air by the end of the day!!! These were really great steps. Being on the conventional ventilator, Hope is much more active again, moving her arms around, being cute and everything.

Hope also had her first feeding of breast milk today! Her first feeding was 4 cc's. She took it very well and as far as we know, digested it well. She had another feeding tonight, so tomorrow we will know how that went.

As you will notice, Hope has begun her fashion show. Her first look on the runway (aka bed) is a red hat with a green ball on top. Rather Christmassy, but also matching the ladybug blanket her isolette is donning. Overall the matching hat and blanket were a big hit on the runway. The next look will be featured tomorrow.

Today, Aunt Em read Hope her first book: The Grouchy Ladybug. Hope really liked the story. She was a little scared at the Grouchy Ladybug and didn't understand why the Grouchy Ladybug was so mean. But at the end when the Grouchy Ladybug and the Friendly Ladybug ate together, Hope was happy that they could get along. Overall, the book was a big hit!! Kwanzaa Zebra & Christmas Bear also made appearances today.

Tomorrow will be another great day, I know it. However, it will be a little sad for Aunt Em as I am forced to go back to Chicago. I don't really want to leave Hope behind, but I know that she is doing great and I will be back in just a few weeks. Plus, the Daily Dose will continue with pictures.