Merry Christmas & Happy New Year!

Hope & Daddy seeing what santa left in Hope's stocking

Well the tree is down and the new year has been rung in. Hope had a great Christmas. She started out Christmas eve by going to visit her Great Grandma Anderson. The family all had lunch together and then great grandma opened her Christmas gifts. Afterward Hope headed to her Grandma and Grandpa Robinson's house where she opened her Christmas gifts. Hope wasn't interested in the oyster soup that grandma and grandpa were having so she took a nap while everyone had dinner. After dinner Hope went to church for the Christmas eve service. That was such a long day that Hope went straight to bed when she got home from church. (it was partly because she was so tired and partly because she was wanting Santa to visit her). Bright and early Christmas morning Hope woke up to find that Santa had visited her in the night. She enjoyed opening her presents much more this year than she did last year. Unfortunately Grandpa Robinson and Great Aunt Dawn were not feeling well so everyone couldn't get together for Christmas dinner like they had planned. Instead Grandma Robinson and Aunt Emily came down and had lunch with mommy, daddy and Hope.

Hope's ventilator weans are going very well. Hope is almost to the point of being on pressure support all the time that she is awake (where she has to initiate the breaths, the ventilator doesn't do it for her). We will be contacting the vent team at U of M soon to find out what the next step will be. Go Hope!!!

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 Dose: Merry Christmas 2009

Hope on Christmas Eve

Hope wondering how many more presents she has to open

Hope and all of Daddy's family on Christmas Eve

Hope's Christmas Ladybug outfit

Hope with Mommy & Daddy on Christmas Day

Hope and her stocking

All of the excitement wore Hope out

After the presents, Hope hanging out with Grandma & Great-Grandma

As you can see from the pictures. Hope had a great Christmas. She was very glad to be home for Christmas this year instead of in the NICU like last year. Hope got to spend lots of time with family which she always loves to do.

We'll put more of a substantive post up soon, but couldn't wait to show you all of Hope's Christmas fun!!

Daily Dose: Tuesday, December 22

Hope & Great-Grandma

Hope looking cute in her cute slippers

Hope hanging out in the living room

As you can see from the adorable pictures, Hope is doing pretty well. In the first picture, Great-Grandma was worried that Hope's hands were getting cold so she decided to share her gloves, always thinking. Hope also has some great little bunny slippers.

Hope has been doing good. Her weight has been pretty consistent, she is weighing in at 23 pounds!!!

The only big change for Hope is that she has currently been relocated from her bedroom to the living while her bedroom is being remodeled. Hope definitely misses her bedroom, but she has enjoyed looking at the Christmas Tree nonstop and has been pining over all the boxes under the tree, imaging all of the things that are inside of them. Hope definitely likes Christmas but DOES NOT enjoy the snow and the cold. She has been wondering why the family farm isn't in Florida and why Great-Grandma was a farmer not an alligator rancher in the warmth.

Hope-mas 2008

Hope: Day 18, looking dapper in her hat

Hope's First Christmas with the Family

All of the gifts brought by Santa

Santa's presents

Santa definitely made it to the McCrib!!!!

As you can see from the pictures above, today has been a very blessed day. To get all the presents in the picture I had to go take it from the balcony, but even then I still didn't get them all in the picture!!! We are still in awe at the incredible amount of generosity and selflessness that we have experienced. Christmas morning at the McCrib was amazing. The children that were there got to see Santa, got HUGE bags of gifts, had breakfast and lunch served, all out of the graciousness of others. It really is amazing!! Hope now has more stuffed animals than the rest of us combined, and she hasn't even left the hospital yet!!!

When we were done with the Santa festivities we hurried over to see Hope. She had another great night, but a little tougher morning. She had to have her dressings redone, and the IV in her head wasn't working out so that had to be put somewhere else. The good news: Hope now gets to wear hats again, hence the awesome Christmas stocking cap. The bad news: Hope has yet another IV site in her little veins. The nurses are taking very good care of Hope today. Watching very closely to make sure she stays stable. We didn't get to stay in very long today because she was a little agitated with all of the medical attention this morning so she wasn't settled enough to have our loving attention. But hopefully this afternoon when we return she will have had some good rest!! The nurses were very kind and took a family picture of us (which I'm sure will end up on the family calendar for 2010). If you look close in the family picture you can see Hope's little hat in the bottom.

Can't wait to see Hope later today, Santa brought her some finger puppets and you can be guaranteed that Aunt Em will be putting on a puppet show today!!! The Santa Bear and Zebra will be visiting hope shortly....

Daily Hope: Christmas Eve

Hope: Day 17

Hope: Day 17

Hope: Day 17

Today Aunt Em arrived to spend Christmas with Hope!! Christmas Eve turned out to be one of Hope's best days yet!!! She was sooo active and happy today. She has continued to be weened off the dopamine, going from 17.5 down to 5. And her oxygen levels have been great! She continues to be repositioned throughout the day and her favorite position seems to be on her tummy. Hope loves snuggling up on her tummy. It's also a little easier for her to breath and keep her oxygen levels up on her tummy, which is why everyone was so excited when her oxygen levels were going off the charts, while she was on her back!!

Hope did so good today. She opened her eyes and was looking around a little bit. Aunt Em told her some stories, but it's Dad's job to tell her the Christmas story, so tomorrow, Hope will find out about another little baby who came into the world to save us all. Similar to that birth, Hope has done her part to make our world a better place. Seeing Hope and being with her is amazing. She is so incredible. You can see her working so hard and doing such a good job.

Seeing Hope really puts things into perspective. I've always known the Christmas Story and that Christmas isn't about Santa (sorry for those of you who I just disappointed) but it is about Jesus coming into the world to save us. This Christmas I haven't been feeling very Christmassy. It is my first Christmas away from Grandma and Aunt Dawn, and I haven't been too excited about that, and I didn't even put up my own Christmas tree or set up any decorations (which is the opposite of everything I look forward to). Mom & Dad have been with Hope for the past two weeks, so they weren't exactly wrapping my presents. It may sound corny, and cheesy, but even though I know when I wake up tomorrow morning (in the hotel room that my parents have overtaken as their home) there won't be any presents and there definitely isn't a tree, but it isn't about that. It's about Hope. The hope that Hope has brought to us all. Santa delivered our gift a few weeks early and there is nothing in the world that could ever convince me to change that.

Again, I cannot stress enough just how touched and amazed we are with the outpouring of prayer, thoughts, kind words, etc that have come our way. Tonight, a very good friend of mine sent me a message, part of which I will leave you with on tonight, Christmas Eve:

The prophet Isaiah foretold that "a little child shall lead them." Our children, be it a son, daughter, niece, or nephew, will lead us in the way of love because they are being led by the One who came as a child to show us the way, the truth, and the life. No wonder this baby is called Hope! She IS hope-- she is made in the image of God and has been sent to unite family members, to prompt prayer, and to center all of us on what is truly important in life.

Our gratitude for the kindness of strangers

Hope's First Bear

The bag of surprises never ended!!

ALL of these presents came from an unnamed generous person, ALL of them for Andrew, Sarah & Hope!!

Aunt Em FINALLY arrived in Indianapolis today and got to spend the entire afternoon with Hope. We will discuss Hope later, but right now, we need to take time to express our gratitude for the incredible acts of others.

Today, as Andrew & Sarah arrived at their McCrib (aka their room in the Ronald McDonald House) a GINORMOUS gift bag was waiting for them, left in their room by an unnamed source. This bag was FILLED, completely FILLED with amazing things for Andrew, Sarah & Hope. There were beanie babies, teddy bears, big stuff animals, small stuffed animals, books, toiletries, gift cards, phone cards, hats, bags, etc. It was AMAZING!!!

It really made us think about just how blessed we were growing up with the loving and generous family that we did, but also it brought us back to reality that the world IS full of good people out there. Every single day another stranger does something that may seem insignificant in their eyes but to Andrew & Sarah and the rest of our family, it is amazing and we cannot even begin to express our gratitude.

Daily Hope: Tuesday

Hope: Day 16

Hope: Day 16

Hope: Day 16
Putting her hands in the air joyously because she knows Aunt Em is coming tomorrow!!

Because I am a FIRM believer that you can never have enough Hope, today, we get 3 doses. As you can see in the last picture, Hope is ecstatic that Aunt Em is coming to visit tomorrow. She was jumping up and down but the nurses didn't like that, so she has reluctantly stopped jumping, but insists on waving her arms in the air.... ok, so maybe that's not what is going on, but since I'm not there to know we will go with that story!

Hope has had another good day, yaaayyyy!! They have been weening her off the dopamine (for her blood pressure) and her other tests have been going well. She has a little bit of congestion in her lungs, so to make sure that doesn't sit, the nurses are repositioning her regularly. Hope goes from stomach, to side, to side, to back, to stomach. But since she loves moving around so much, she probably doesn't mind. She still really likes it when her mom & dad put their hands in so she can hold them.

In case you didn't catch it... tomorrow Aunt Em will be arriving in Indianapolis to spend some quality time with Hope. We pray for good weather so my flight can be on time and arrive safely. Hope doesn't know it yet but Aunt Em is bringing CHRISTMAS PRESENTS!!! Because that is what Aunt's do, well at least that's what my Aunt did and what I'm going to do. Stay tuned for MANY MANY MANY more pictures of Hope coming at you soon. She's our little Christmas Hope and we need the whole world to know how much hope she has brought to our lives.

Daily Hope: Monday

Hope: Day 15

Hope LOVES her Santa hat, or at least she looks like she does!! She had a great night last night. She has a little bit of a staph infection, or something to that effect, but they are working with some antibiotics and should have that contained and controlled. They are also working on weening her off of one of the other drugs that she is on, but I can't remember which one. The doctors are very encouraged by all of Hope's good work.

Hope has been a real soldier in her 15 days here. Hope doesn't even know but she has people everywhere praying for her and watching out for her. And now, she has another angel in heaven. Saturday night Hope's great-great-Aunt Shirley joined the ranks of guardian angels watching over her. She's got a whole crew up there making sure things go well!! Aunt Shirley didn't even get to meet Hope but I know that she's going to make sure everything is ok.

Today being Monday, the 22nd, means that only a day and a half before Aunt Em gets to see Hope again!! While the weather and mother nature have thrown a wrench in MY plans for traveling to Michigan before Indianapolis causing me to cancel the Michigan portion of the holiday tour, the good news is that Aunt Em will be seeing Hope sooner! Hope better be ready because there is a lot of loving coming her way on Wednesday!

Ho-Ho-Hope

Christmas Hope

Hope is a crowd favorite around the NICU. Her respiratory therapist made this hat, special, just for her!! It is official, Hope is bringing Christmas and it is filled with joy.