Happy Birthday & Yay Hope!

Ladybug Cookies

Hope trying some of the frosting from her birthday cookies

The HAPPY Birthday girl!

Daddy, get this off my head!

Celebrating Christmas with Grandpa & Grandma Holtz

Hanging out with Grandpa & Grandma Holtz

Opening her new Christmas tree ornament with Grandma

Snuggling with Grandma

Hope has been very busy these past few weeks.  She celebrated her very big 2nd birthday!!  She spent most of her birthday sleeping as she has been cutting an awful lot of teeth lately.  (And how many birthday girls wouldn't want to spend a wintery birthday snuggled warmly in their bed?)

She celebrated her birthday a little bit early with Grandma and Grandpa Holtz.  They spent a week visiting with her and she just ate up all of the attention!  She got to play and snuggle and celebrate both her birthday and Christmas early with them.  She doesn't think she's the least bit spoiled though.

On the day of her birthday she celebrated with Mommy, Daddy and Grandma and Grandpa Robinson.  She opened lots of presents and nibbled on some frosting from her ladybug birthday cookies.

On a medical note, we went to U of M on Wednesday to meet with a new pulmonologist.  We had gotten quite frustrated with the pulmonology office in Grand Rapids.  We were hoping that the doctors at U of M would agree with us that Hope was ready to be closer to getting off of the ventilator but they blew even us away.  They were surprised to see how high her settings were and they immediately lowered them.  They even took Hope off of the ventilator briefly to see how she would do - Daddy and Mommy were speechless! - Hope did great!  Starting right away we are going to start "sprinting" Hope.  This means giving her periods of time where she will do more of the work of breathing on her own - kind of like training for a marathon in little runs.  Right now the ventilator makes sure that she breathes 16 times each minute.  If she doesn't it will kick in and give her a breath.  Her first "sprints" will be to turn that feature off and make Hope do all of the breathing on her own.  She is doing this twice a day for two hours at a time (and doing fabulouslly with it!!).  Each week we will add an hour to each of the time blocks until she is doing all the breathing for herself.  Once she is doing that we will start "sprinting" her by actually disconnecting her from the ventilator for period of time.  We are so happy and excited to have this plan in place!! 

HAPPY BIRTHDAY & YAY HOPE!!

Daily Hope: Sunday, January 25

Hope & her Mommy

Hope: 7 weeks

Hope's hand!!

Who wants to hold Aunt Em's hand?? "I do!!!" says Hope.

Hope & Aunt Em!!!

Hope: 7 weeks!

Hope & her Pacifier

Hope & Grandpa Robinson: look how much she's grown!!

Another good day today for Hope!! She is 7 weeks old today! So hard to believe that it has been 7 weeks already!!!

Hope spent a few hours this afternoon snuggling with her Daddy, which she loved, but had to cut it a little short so the nurses could take care of business in the NICU. Hope also got to hold Aunt Em's hand for the first time today!!! At first Hope was a little less than impressed, but eventually Aunt Em had to pry Hope's hand off of her finger, but only because Aunt Em HAD to drive back to Chicago.

Hope continued with her feedings today and handled those well. Tomorrow could potentially be a big day. Hope may be extubated, but we just have to wait and see. It isn't really our timing that we are going on, but Hope's. She does keep trying to pull her tubes out, but we'll see if she is really ready. Being a baby is very hard work, remembering to breathe, digest, breathe, sleep, breathe. Lots of hard work. At least being cute comes especially easy for Hope!

While the position isn't EXACT, you can see from the last picture that was posted above and compare it with the one below, you can really see just how much Hope has grown and just how well she is doing. And also you can see that now her little tiny diapers actually fit!!!!

Hope: 3 days old

Hope: 49 days old

Daily Hope: Thursday, January 8

Hope's foot, plump!!

Hope: day 32

Hope & Grandma!!

Hope: "really Aunt Em? MOOORE pictures?"

Hope: day 32, cute as a ladybug

Hope: day 32, looking nice and plump!!

Hope: Day 32, the pacifier is potentially larger than her entire arm

Hope: Day 32, suck Hope suck!!

Hope: day 32; chomping on that pacifier

Daddy is a bit wore out

Daddy Doctor

Hope: day 32; holding onto mommy's hand

Hope is under there somewhere, really

This diaper change was... well.... interesting

As you can see, Hope had a very photogenic day. All the photo shoots went very well, she is quite the ham at times. Hope didn't have any big changes today, minus the incredible sucking that she showed us. Which is a big milestone and we are all so excited about!!!

Hope's nutrition will be remaining the same for at least another day, but they did add more calories, working on beefing her up!

As you can see, Hope's mommy & daddy are very active in her daily care. Taking temperatures, "burping" via tube, feeding, changing, etc. More ways to make sure Hope is feeling good and is comfortable. Obviously her favorite part of the day is storytime with Aunt Em. Today we read Ten Little Ladybugs. She thoroughly enjoyed it and was very excited that at the end of the book the ladybug made it home. Hope is very excited to go home, but she knows she has a long way to go before she can go home, so she's accepting that and working hard.

Hope gave a shoutout to Grandpa R who is snowed in at "home" in the G-rant. She said she misses you and then made some sort of a "sign language" with her hand that she said he would understand. (must be a Grandpa/Granddaughter thing)

Again, we are thankful today for the good day today. Aunt Em would rate today a solid 7, or a "sucking 7."

Sidebar.... due to popular demand.... Aunt Em is highly considering quitting law school and becoming a professional blogger, but only for Hope. Basically Aunt Em would serve as Hope's publicist and stylist, not to mention her own personal tutor. Mommy & Daddy (and also Grandma) advised that unless Aunt Em has a "rich uncle" to assist, that would probably not be the best idea in the world. Alas... continuing to freelance in "freetime" is what Aunt Em shall do.

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: Saturday, January 3

Hope: day 27

Hope is WIDE AWAKE!!! As you can see from the Daily Dose today, her eyes are open. Grandpa says that for most of the day her eyes have been completely open, not just squinting. There isn't a lot of new updates, except, the question that everyone has been asking can now be answered! Hope weighs....... drum roll please..........

(still waiting for that drum roll)

................................................. 1 pound 10 ounces!!!! That is 2 ounces more than when she was born, so that is GREAT!! She has been loving her feedings and so those will continue.

Grandpa said that Hope is doing great and everything is going well. So I'll take his word on that one.

Hope's daddy didn't give me a rating for today but I'm going to give it a 7.2 based on the information I have received.

Also, a sidenote.... make sure to stay tuned for a special new hat in mid January, maybe around January 20th or something close to that.

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: Monday

Hope: Day 22

The Daily Dose today is a picture of Hope's Dad helping to reposition her. Hope resumed her feedings today, which is great because that means she can get bigger and stronger!! The feedings are going well so we pray that continues. She is back onto room air with the ventilator and has continued to be weaned off the Dopamine (for blood pressure) but still has to take that. Her chest x-rays showed some regression, but overall things were doing better than yesterday.

According to very credible sources (Hope's mom and Grandpa), Hope misses her Aunt Em; however, she allegedly also misses Christmas Bear and Kwanzaa Zebra. Hope can live without Aunt Em, but take away her little friends and she gets mad!! Grandpa said that Hope was very active today, kicking and moving her arms around. In my opinion, she was totally throwing a temper tantrum because Aunt Em wasn't there. Yes, that's definitely what was going on. Aunt Em must go back very very soon!!

A mind of her own....

Hope is doing well in her new home at Riley Hospital for Children.

The doctors said she had a small series of small seizures last night, which is not uncommon after surgery. They did an EEG which DID NOT show seizure activity but DID show normal brain activity, so that is great.

They also did a brain scan. There are 4 levels of brain bleeds:
Level 1: no worries, typical
Level 2: not significant, not overly concerned
Level 3: begin concern
Level 4: very concerned
In Elkhart, on Monday, Hope had a level 1 brain bleed. When she was tested today she had a very low level 2 brain bleed. The doctors are not concerned because that is typical after surgery. They are watching her (per usual) but do not expect the bleed to worsen.

The doctors are also very encouraged. Her respiratory numbers are great. Her metabolic functions are a little unstable, however, following a surgery it can take a few days for a normal adult to get their metabolic functions back in order, so with little Hope it might take longer, and they anticipated that. They are constantly checking and adjusting accordingly.

The latest word from Grandpa is that he really likes the staff at Riley and thinks they are doing a great job. Which, for those of you who don't know Hope's Grandpa, is a big deal. He's knows his hospitals and nurses and if he approves, well then I have to agree!!!

Grandpa also said that Hope is still very active, moving around, wiggling her little arms and legs. The nurses have also said that they thoroughly enjoy Hope but that "she definitely has a mind of her own" (which Grandpa is convinced she gets from her Dad).

Look back later for the Daily Hope.

Thanks for all the prayers and support. Keep them coming!

Holding onto Hope

Hope: Day 2

Grandpa's hand looks soooo big next to little Hope.