Daily Dose, Wednesday June 3

Heading off to the airport

Hope settled into her new bed

Today was a very big day for Hope. She made the big trip from Indianapolis to Grand Rapids. The day started out bright and early. At 7 am the transport team arrived and helped Hope get settled into a nice warm traveling bed. They sped off to the airport where Hope got on an airplane and took the second flight of her life. She thought the flying was fun until the plane hit some turbulence. At that point Hope wasn't having fun any more and the nurses taking care of her on the plane had to give her a little bit of Ativan to calm her down. After that she slept the rest of the way to Grand Rapids.

Once in Grand Rapids Hope quickly got settled into her new bed. She likes her new surroundings very much, there is lots of room for her and there is a window so she can get some natural light. Hope didn't get a lot of time to relax after she got settled in. She had lots of visitors (mainly really nice doctors) coming to check on her and to meet her. Hope met 2 neonatologists, the pulmonologist and his physicians assistant, the social worker, the discharge planner, the opthalmologists nurse, the physical therapist and many other important people. One person she was even happier to meet though was Caitlin. Hope likes Caitlin and thinks they will be very good friends.

Daily Dose: Wednesday, April 29

Hope is looking at something interesting

"Did you just say I have more new clothes?"

"This is what I think about CPAP"

Hope had a quiet day today, which we are all thankful for. She had no episodes, gained 20 grams (putting her up to 3070 grams), went up slightly on her feeds and nutritional supplements, and got some great snuggle time with Grandpa R, Mommy & Daddy.

While Hope was chilling today, Mommy & Daddy had a very big day. They had a discussion with the doctors to discuss what happens between now and Hope's discharge, aka "care conference." The doctors are firmly recommending a tracheotomy and Mommy & Daddy have consented to that. It will take Hope a couple of weeks to recover from the surgery. After that the focus will be on weaning her back off the ventilator as she will be on it for surgery, and then determining whether or not she will be able to feed orally. If she isn't able to get most of her nutrition orally, Hope will have to have another surgery to have a G tube put in. That will provide semi-permanent access to her stomach.

Breaking it down.... Hope is going to have a tracheotomy. If she does well with the tracheotomy and feeding, the anticipated arrival home is 5-7 weeks. This is a little bit longer than we had anticipated, but it is not devastating because there is finally a light at the end of the tunnel, a ribbon at the end of the marathon, an exit off the highway, a... (ok, I think you get the point) Please pray for ALL of us that we can find patience with this new knowledge and our extended stay in Indianapolis. A special prayer request straight from Hope: please pray that Daddy can keep his mouth shut and not make a scene for a few more weeks. Apparently Hope knows her Daddy just as well as the rest of us and she's only 5 months old!!!

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.

Hope is out of surgery

Hope has had a very eventful day. She had her first ride on a plane and her first surgery!!

Her surgery went well, says the surgeon. He also said that she was one of the tiniest babies he has worked on, but she is a fighter. She is stable for now, but definitely not out of the woods. They removed the necrotic portion of the bowel and have connected a colostomy temporarily. We are not sure how long she will be at Riley, could be anywhere from 2 to 6 weeks. Time will tell. When she is released from Riley they will fly her back to South Bend. She will continue to have the colostomy until she gains more weight, but I'm not exactly sure how much. When it is time for the colostomy to be removed she will be flown back to Riley to have that procedure done.

We have so many things to be thankful for today. We are thankful for safe travels for Hope, and the rest of the family, for the incredible transfer team, for the surgeon and his precision, and for every single prayer and warm thought. We also wanted to thank the Durham's for swinging through and spending some time us the family.

We appreciate everyone's support so much, but don't stop now. Hope has a long road ahead of her, but we know she's a fighter and, personally, I look forward to introducing her to all of you!!!


In other news: I just finished my last final for the semester. Thank goodness those are done.

Hope arrived

Hope arrived safely at Riley Hospital for Children. Her transfer team said she handled the flight well and was stable when they left her in the care of the hospital. Grandparents and parents are not far behind.

Hope's First Flight** Updated

Hope had a good night, but her bowels still aren't right. The doctors and surgeons decided it was best for her to go to Riley Hospital for Children in Indianapolis so she can have surgery to repair her bowels. She will be traveling in some sort of an aircraft, but a chopper, but some small plane or something. They will be taking her at 9am EST. We aren't sure if they will be doing surgery today or tomorrow but now we ask for a safe flight for Hope and her transfer team and safe driving for Grandpa & Grandma Robinson, Grandma Holtz, and Andrew & Sarah (I guess they would be Dad & Mom).

Will keep updated.

Update** 10.45am CST**
Hope has left the building. Her plane arrived and she is now in the hands of the transfer team. Grandparents and parents are en route via car.

Update as of 5pm Tuesday

Thank you so much for your outpouring of love and support for Hope during this really rough time for her.

Hope will not be transferred to Riley in Indianapolis tonight. Her doctor feels she is stable enough to stay in South Bend till the morning, and the weather is not very cooperative for airlift, which would mean putting her on 3.5 hours worth of bad roads (which I personally disapprove of). Her status has not changed. They will do another x-ray series at 6am tomorrow morning to try and determine what is going on with her bowel, if it has died or if it is regrowing.

Andrew and Sarah have checked BACK into the Ronald McDonald Room so they will be staying there again tonight.

Please continue to pray for Hope as she continues to fight and for Andrew and Sarah as they try to figure out where to go from here.

(also, feel free to leave comments, prayers, thoughts, well wishes on here. We'd love to know who's out there praying for our Hope)