Prayers for Hope

Hope had a rough night last night. Her blood pressure is down so she has been started on Dopamine to raise her blood pressure. They think she has an infection but they are unable to find the source of it yet. Her urine output is not what it should be. X-rays and blood cultures have been done. X-rays of her "gut" (a KUB) and chest showed that everything was normal, but we have to play the waiting game with the blood cultures.

The doctors are encouraged because they say she doesn't "look" sick and has been more active than yesterday. Please pray that they are able to pinpoint what is making our little Hope sick and help her feel better soon so she can keep growing and getting strong.

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: Tuesday

Hope: Day 23

As you can see in today's Daily Dose, Hope is posing, Vogue style, for the camera. Either that or she is sick of that old hat and wants a new one for the fashion show. She really should complain to the staff about that!!!

Last night Hope had kind of a rough night. Her ET tube came "dislodged" which caused her heart rate to drop significantly, requiring chest compressions and "bagging", a little bit scary. But the doctors and nurses say that happens sometime and not to be worried about it. Easier said than done. But.... the good news is that Hope had a great day today. Her blood gasses were better than they have been, she is finally off the Dopamine again, and her oxygen has been weaned so she is almost back on room air. Hope continues her feedings which have been going well, so that is great.

Again, Hope complains that she misses her Aunt Em. So Aunt Em WILL be making an appearance at the NICU within a week and a half, hopefully. In the meantime, Grandma & Grandpa Robinson have been keeping Hope and her parents company. Cheers to Hope as we look forward to an incredible year!!

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!!

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 19

Hope: Day 19

Hope: Day 19

Hope: Day 19

Hope and mom

Hope's new friends: Christmas Bear & Kwanzaa Zebra

Hope and her Christmas Bear

Today was a very good day for Hope. She was weened off the Dopamine (for blood pressure) and did wonderful, keeping her blood pressure right where it is supposed to be!! Hope also had a very demanding respiratory day. The respiratory therapists were working hard with Hope today. After a respiratory treatment, they suctioned and they suctioned and they suctioned some more!! But is was very prosperous!! Slowly but surely Hope's lungs are starting to clear up. They suctioned lots of good gunk out of her lungs. And she has been reacting very well to the "aggressive respiratory treatment" today.

As you can see above, Hope has made some new friends. She now has two finger puppet friends to keep her company and tell her stories. They are "Christmas Bear" and "Kwanzaa Zebra". Yesterday, Kwanzaa Zebra told Hope all about zebras and safaris in South Africa, about how zebras run wild through the bush, and how someday when Hope is older, Aunt Em will take her on a safari and watch zebras. Christmas Bear told Hope about all the fun things that happen around Christmas time. Today Christmas Bear told Hope all about Christmas and how, just like Jesus, Hope is a gift from God.

Hope definitely likes her new friends, her heart rate stabilizing and her oxygen levels going up above the numbers her dad approves of. Her friends will be telling more stories tomorrow, but Hope has a fashion show tomorrow so there may not be as many opportunities for stories.

In other Hope news... The scoreboard has started. The game is between Hope and her dad. Only the beginning of a long running battle. Today's battle was with Hope's hat. Recently she had been fighting with her dad, dad puts hat on, Hope pushes hat off. Dad puts hat back on. Hope closes all her veins so she has to have an IV in her head, which means no hat. Hope wins. HOWEVER... we didn't begin keeping score until today, and today was a hat day. So the score begins:
Dad- 1; Hope- 0

Things to look forward to tomorrow:
another great day, Hope's first fashion show, an update on the scoreboard, a new rating system for Hope's days, a new rating system for dad's stress levels....