Daily Dose: Tuesday, June 30

Hope's big "event" meeting was today, but wasn't exactly how everyone thought it would go. It was great for Mommy & Daddy to finally meet some people, as many of the people from the home health services Hope will need after she leaves the hospital were there so faces could be put with names. There isn't a lot of concrete information as to what happens between now and when Hope goes home, which the nurses apparently refer to as "going to the zoo." Personally I think that is weird, but that's just my opinion. Hope doesn't want to go to the zoo she wants to go home. The only animals Hope cares about aren't even animals, they are little Ladybugs, other than that, she is uninterested!

Some things that Mommy & Daddy did find out is that Hope is scheduled to have a nissen and g-tube surgery on Thursday afternoon, pending scheduling. These are two surgeries they do at once. The nissen should help to eliminate the reflux that she is having. A lot of babies have an underdeveloped valve that keeps the contents of the stomach where they belong. The nissen creates an artificial valve by wrapping part of the stomach around the esophogus. The other part of the surgery is to place a tube directly into her stomach, providing Hope with a safe way to eat if she can't take all of her food by bottle. After she recovers from the surgery she will start bottle feeding and hopefully will move smoothly up to full feedings!

Hope is excited to bottle feed, but the doctors are a little hesitent. Apparently babies with trachs and on ventilators, like Hope, don't bottle feed. However, as we all know, Hope is not about to be restricted by things that some other babies do and is determined to prove that babies with trachs and on ventilators CAN bottle feed. Hope's swallow study last week showed that she swallowed beautifully (per the norm for Hope). Unfortunately, the doctors are still doubting and ordered ANOTHER swallow study for today. In this study they put a camera down Hope's nose and watched her take a bottle. Hope was a little perturbed and annoyed that they don't believe that she is a beautiful swallower so instead of participating in the test she went to sleep. Surprise surprise, the test was inconclusive.

Aunt Em likes Hope's attitude. Show them who is boss. Keep doing what you do. And when they don't believe you or do something you don't like, protest.

Daily Dose: Monday, June 29

Hope had a good day today- her blood gasses were so good the doctors decided to wean her respiratory settings. We are hoping that Hope will tolerate this well and begin weaning again.

We don't have a firm date for Hope's next surgery yet but will probably be sometime next week. Hope has continued to be an all-star with her feedings. She has now been cleared for 20mls in her bottle now. The plan for after surgery (and after she begins eating again) is to get her to the point she takes as much as she wants from the bottle, which Aunt Em thinks will be the entire bottle. This is great progress!!!

Tomorrow is the BIG MEETING with everyone involved in Hope's care, including the home nursing staff, home ventilator staff, etc. We are looking forward to good news on when Hope will be cleared to come home.

Daily Dose: Sunday, June 28

Hope trying to figure out what those hideous things are on Mommy & Daddy's hands

Hope had a good day today, but Mommy & Daddy are a little frustrated. She has done well with her feedings lately and seems to be doing well with her ventilation, having an exceptional blood gas last night.

As a routine measure, all the babies in the NICU, including Hope, were cultured for bacterial infections. Hope's cultures came back positive for a bacteria that is not making her sick, but is probably just part of her normal flora. Because of that, as long as Hope is in the hospital she will be in "contact isolation," meaning that gloves and gowns must be worn by anyone who interacts with Hope at all times. Not being able to touch Hope does not work for Mommy & Daddy, AT ALL!!

Tomorrow morning, Mommy & Daddy will be putting up a good fight to try and get some type of exception made. However, as you can see from the picture, today Mommy & Daddy's hands turned to prunes and Hope was not excited about it.

Daily Dose: Saturday, June 27

Hope had a quiet day today. We did not get word back from the EEG, so no changes have been made. Hope is gaining weight again and is now back up to 10 pounds 7 ounces.

Hope is looking adorable in her cute chick shirt, and as usual, she is matching her surroundings well!!

On a different note, we send our thoughts and prayers to the family of Ethin Twigg. Ethin's mom, Jessica, is a follower of Hope's blog and goes to church with Grandma & Grandpa R. Ethin was born in January with heart problems. Sadly, Ethin passed away unexpectedly today. We can't even begin to imagine the pain Jessica must feel, but we hope everyone will send some loving thoughts her way.

Daily Dose: Friday, June 26

Hope finally finished her EEG today around 2.30pm. There are no results back yet but maybe tomorrow or Monday. After the EEG was finished, Hope had lots of goop (which I have been informed is the official medical terminology) in her hair, so she took a bath and got her hair brushed for the first time!!!! Hope was very happy to have the electrodes and gauze removed from her headh.

Daily Dose: Thursday, June 25

Hope had a difficult night last night. She had several brady and desat episodes. In the the past the doctors had wondered if these might be related to any sort of seizure activity. Hope had two EEGs done at Riley but they were shorter (20-30 minute) tests and Hope had slept straight through these. This morning the doctors decided to have a prolonged EEG test done. This one would run until she had one of these events or for 24 hours. After the test had run for a few hours Hope hadn't had any big episodes so they decided to let it run for the full 24 hours. It was started this morning and will conclude tomorrow morning.

As you can see from the picture Hope had her head all wrapped up to protect all the electrodes that were stuck to her head. Her nurse, knowing Hope is the up and coming fashonista, thought that the white gauze head wrap was completely unacceptable to Hope's ensemble and so she made Hope a bow for her to wear.

Hope was started on diaretics a couple of days ago because she has some excess fluid on her lungs. The diaretics have actually made Hope loose weight (presumably water weight) so she is down to 10lbs 3 ounces. It's good that she is getting rid of the excess fluid though.

Daily Dose: Wednesday, June 24

Hope dancing in her bouncy seat

Hope had a busy day today. She had three BIG tests done. An Upper GI, a small bowel followthrough, and a video swallow study. Hope tolerated all of the tests well. The initial results look good but the doctors will tell us more tomorrow.

Hope is quite the dancing machine in her little bouncy chair, she's not going to let much hold her back.

Daily Dose: Tuesday, June 23

Hope did not have her swallow study done today. The doctor called a few minutes prior to the scheduled time and said he couldn't make it, postponing it until next Tuesday. This is a little disappointing as everyone wanted to know how Hope was doing on her swallowing and possibly increasing her oral feeds. The doctor did approve her to resume her daily bottle feeding while she waits for the study.

Hope had an eye exam today. The exam showed no changes so she will have her eyes checked again before discharge. As you can see, Hope is really getting used to her new surroundings and is really hamming it up. She loves to get her beauty sleep, so the eye mask that she had to wear after the eye exam was welcome!!

Daily Dose: Monday, June 22

Hope had a good day today!!! She was awake for most of the day. She had many visitors and got to meet great aunt Sue, great uncle Tom and cousin Jeff (all from Iowa). They were very excited and happy to meet Hope.

Tomorrow will be a big day for Hope. First thing in the morning she has her swallow study. They are going to put a camera down her throat to see if she is swallowing things properly. Hopefully she will do GREAT with the test and be able to resume her oral feedings soon!

Hope was very excited to meet more of her extended family today but was even more excited to with Grandma & Grandpa Robinson a happy 41st anniversary!!!

Daily Dose: Sunday, June 21

Hope had a not so comfortable day today. She had a great morning until Mommy & Daddy got to the hospital. At that point, Hope gave Daddy a special "Happy Father's Day" gift by going through a bad brady and desat, promptly followed with two more events within the hour. Not exactly the Father's Day gift Daddy was looking for.

The pulmonologist decided that it would be best for Hope not to try her bottle feeding again until after she has her swallow study on Tuesday. Based on the results of her last chest xray, it seem that she is aspirating a small amount of the feedings into her lungs, but we won't know for sure until after her study.

Hope looked pretty restless throughout the day and appeared as though her tummy hurt. As Daddy held her, Hope seemed to calm down and be on the upward swing.

Grandma and Grandpa Robinson visited Hope this afternoon and Hope snuggled with Mommy & Daddy today.

Daily Dose: Saturday, June 20

Hope had a nice day today. She had a good soak in the tub and then took a post-bath nap. She took the bottle again with no problems, and they have finally scheduled the swallow study which will happen on Tuesday. Hopefully it shows good results and Hope can start more bottle feeds!

The doctors are thinking about weaning Hope off the valium and trying a different drug that might help with any tummy aches she is having.

Hope is steadily growing, now weighing just over 10 pounds 10 ounces!!!!

Daily Dose: Friday, June 19

Hope had a good day. She tolerated her feeds much better last night, and her residuals seem to be decreasing, which is good. She played again during physical therapy and did well. Hope also got another chance at the bottle feed and did well with her 10ml feeding.

Hope spent most of the morning and early afternoon awake, very happy sitting up and sitting in her bouncy seat. Hope was done with laying down, but after 6 months in bed can you blame her?

Daily Dose: Thursday, June 18

As you can see from the picture, Hope is loving life. In the picture she is enjoying her NEW position in her old room, the new position is in the sun. So she is already picking up on Aunt Em's habits and enjoying the sun. She is taking a nap in the sun, but really.... do you blame her? Absolutely not!!!

Currently the doctors are trying to wean Hope off her ventilator settings, or at least down a little over the next few weeks. Everyone is very optimistic that Hope will be able to go home on less or even NO, that's right people: NO, ventilator support!!!! This is very very big!! Please pray for Hope and her ventilator settings!!

In other news today..... Mommy & Daddy had a family conference today with Hope's doctors and nurses to get a better understanding of where Hope is at this stage. It is likely, at this stage, that Hope will be able to come in...................................... DRUM ROLL PLEASE.......... ...................................................................... 6-8 weeks!!!!

Hope is close to being medically able to come home, however still not quite there, but the major thing right now is getting all of the home care things set up and making sure that Hope's (and Mommy/Daddy's) new home is ready for not only Mommy & Daddy but for Hope and her home care as well.

Daily Dose: Wednesday, June 17

Hope was moved back to her regular room today, but has an improved spot. She is now in the position next to the window so she can get lots of sunlight, but don't worry, Aunt Em will be sure to share with Hope the importance of sunscreen when tanning.

Hope worked with her physical therapist today and he thought she was doing well. She also took another 30ml bottle!!

Hope was a little less than exciting when she had to get her 6 month immunizations, but it is part of growing up and being a big girl so she endured.

Daily Dose: Tuesday, June 16

Hope started her day off with more bottle feeding. She was supposed to only be able to try drinking 10ml, however, there was 30 ml in the bottle and Hope just downed it all. This was great news, and hopefully they will be doing a swallow study soon to see how things are going.

Hope was having some problems digesting, with big residuals left over. The doctors did an xray and found that Hope has a loop in her intestines. The doctors aren't too concerned about this at this stage, but will keep an eye on things just to be safe.

Daily Dose: Monday, June 15

Hope has already mastered the pout

Hope loves to be read to

Today was quite an exciting day for little Hope. The most exciting part was that Aunt Em was back !!! Aunt Em and Hope spent the entire afternoon together, snuggling, reading, talking (well Aunt Em did the talking and Hope listened, squeaking her approval or disapproval every now and then). Hope listened to a story about the ladybird (aka ladybug in Ireland) who got lost and had to find her way home.

Medically, Hope had other exciting things today. She tried a bottle for a few minutes and that went very well. Hope will be trying again tomorrow. Hope also had some play time on the floor, doing her exercises and tummy time.

Another exciting part of today was that Hope got to take a ride in her bed to a new room where she has a great window view. Hope's current room is getting redecorated, so she has been relocated but only temporarily, moving back tomorrow or the next day.

Daily Dose, Saturday June 13

Hope has had a very good couple of days. On Friday she got up out of bed and played on the floor with her physical therapist again. She tried to tell him at first that she wasn't in the mood to play and she wanted to sleep, but everytime she would pretend to sleep, she'd open her eyes back up and find that he was still there!! Finally she figured, 'what the heck' and decided since she was up she might as well play.

As you can see from the last picture, Hope is still enjoying her mirror. She fell asleep watching herself in it.

Hope has broken another weight milestone. Her latest weight is ..... drum roll please.... 10 POUNDS 2 OUNCES!!! Hope is now over 10 pounds!!! Way to go Hope!!!!!

Special Thank You

Usually Aunt Emily is the one making the editorial sidebars but today it's our turn....

As we go through life each and every one of us impact each other in ways we can't even imagine. We know that in her 6 months here already, Hope has touched numerous lives, not the least of which is ours. She has shown us strength beyond our imaginations. She has brought people together in so many ways, gathering to talk about Hope, gathering in prayer and gathering to offer support. Tonight that happened in a way that has touched us so deeply that these words barely even begin to express.

As most of you know, tonight a pancake dinner benefit was held for Hope. We were so moved that people wanted to offer support in this way, but what we experienced tonight far surpassed anything we might have expected going into the evening. To witness a community coming together offering hugs, kind words and hard earned money in support of a child most have only met in pictures and blog updates is truly overwhelming.

It would be dishonest to say we haven't had times in the past months when we felt worried, scared and alone. Tonight we were reminded (with amazing clarity) that we are not alone, we need not fear and we do not carry the worry alone. We want to thank each and every one of you personally for your amazing love and support, whether you were physically at the supper tonight or there with us in thoughts and spirit. You may not yet realize it but what you gave us tonight will last forever in our hearts. Towards the end of the evening, the pastor of our church asked me if we had a chance to eat anything yet. I told her that we hadn't and at first she thought we must be quite hungry. I told her that what we were experiencing was far more nourishing. You have each nourished our hearts and our spirits beyond words. Thank You.

We hope that in the weeks, months and years to come, all of you get the chance to meet and get to know Hope. We hope that she comes to know and love the community (near and far) that has carried her through and loves her so dearly.

Drew & Sarah

Daily Dose, Thursday June 11

Hope was tired today. She was up most of the night admiring the beautiful baby that appeared in the mirror that was put in her bed overnight.

The doctors think that since Hope has been doing much better not arching her back and having fewer severe episodes, they want to try to reduce the amount of valium she is getting. Hopefully this will allow her to be more alert during the day but still remain calm and comfortable.

Since she was so tired and slept so much today, Hope didn't get to try a bottle feeding today. Hopefully she will be a little more alert tomorrow and will be able to show everyone how well she can eat from a bottle.

Special Announcement from London

So as you may have noticed, Aunt Em has not been making the editorial comments for the past 3+ weeks. She has been BUSY traveling in Europe for part of her studies and will be returning to "normal" duties and life beginning on Monday, however... there is an important announcement that needs to be made:

BENEFIT FOR HOPE
Tomorrow, FRIDAY, June 12th, 2009

There will be a pancake dinner fundraiser on June 12th at the Grant Middle School Cafetorium from 5:00 - 7:00 PM. Proceeds from this event will go towards defraying medical costs for Hope Vivian Robinson. Hope was born on December 7, 2008, 15 weeks before her due date. She has been in Indianapolis and is now being moved to the DeVos Children's Hospital in GR. The cost for this move is over $10,000 and currently not covered by insurance. Hope is the daughter of Grant Alumni Andrew and Sarah (Holtz) Robinson and grand-daughter of school board president Dave Robinson. Dinner is on a donation basis. Come on out for a great dinner and help to bring little Hope home to Michigan!

Not able to make the benefit? You can stop by any ChoiceOne branch and make a donation in Hope's name or send a donation to:
Choice one Bank
10 West Main
Grant, Mi. 49327
Just be sure to include "Hope Robinson's Account" with the donation.

Not near a ChoiceOne bank? paypal your donation to emilydrobinson@gmail.com and include "Hope's Benefit" in the subject.

Aunt Em hopes that lots of people will come out to show support for Hope and our family, but also that they will come out so that they can see how Hope has grown and talk to mommy & daddy & the rest of the family.

Daily Dose, Wednesday June 10

Hope had a great day with lots of cuddling (as you can see). She cuddled with mommy, Grandma R, Grandpa R and daddy might have snuck in a kiss and a snuggle or two.

Hope got a new type of trach tube. This one has a flexible neck which allows the ventilator tubing to be away from her face. She is much more comfortable with this tubing and can move around without getting caught up as easily in the tubing.

Hope is still putting on the weight. Today she weighed in at 4,500 grams - 9 pounds 14 ounces! Before we know it Hope will be over 10 pounds!!!

Daily Dose, Tuesday June 9

Hope spent the morning playing on the floor with her physical therapist. She did very well with it which everyone was very happy about.

The doctors weren't ready to try giving her a bottle just yet. They want to wait until she is not getting breaths from the ventilator as trying to swallow when the ventilator is forcing air into her lungs could cause her to choke.

Hope got to meet another special person today - Carol Zinneker came to visit Hope. She brought a cute flower for Hope to put on her crib and look at. Hope is so happy to have met a new friend and is thankful for the beautiful gift.

Daily Dose, Monday June 8

Hope shared one of daddy's favorite past times with him today - celebrating her support of her (daddy's) favorite baseball team, the Boston Red Sox. Hope was so happy when her friend Ann sent her this hat so she can now share a hobby with daddy. Hope and daddy cuddled and talked all about the Red Sox today.

Hope also spent some time playing with Jason her physical therapist and Marla, her occupational therapist. Everyone was very happy with awake and alert Hope was and how well she did with her therapies. Jason talked to mommy and daddy about bringing in some play mats so that Hope can get down on the floor and play with everyone like a regular baby. Hope, mommy and daddy all thought this was a fantastic idea and are all very excited about the idea of getting to play together like that.

Hope took another tub bath today. Although she's still getting used to the sensation of slipping into a tub of warm water she's getting more and more used to the spa treatments. After the warm soak, Hope got a manicure (her fingernails trimmed) and a facial (some aquaphor lotion rubbed on the dry spot on her forehead). Hope thinks she could get very used to this pampering kind of stuff!!

Daily Dose, Sunday June 7

Happy 6 Month Birthday Hope!!!

It's hard to believe but Hope is 6 months old today! She spent the day checking out the view from different angles in her bed, her nurse turned her around in her bed so she could see the room. Daddy and Mommy both spent lots of time loving on Hope today. Grandpa and Grandma Robinson also visited Hope to wish her a very happy birthday.

Daily Dose, Saturday June 6

Today was a very big day for Hope. She got to take her first tub bath! She wasn't sure what to think about sitting in a tub of warm soapy water at first but she quickly decided that the spa treatment was working for her. She got very relaxed and after drying off and getting dressed (fashionably matching her unstuffed teddy bear), she promptly drifted off to sleep for an afternoon nap.

After waking up from her nap Hope met lots of new people. She got to meet Dick and Marty Osborn, Pastor Ruth McCarty and Phil and Mary Ernvall. She was very happy to meet all these people.

Daily Dose, Friday June 5

Hope settled into her new surroundings a little more today. She got out of bed to play with Jason her physical therapist. Overall, Jason was pleased with how Hope was doing.

On the possibility that Hope's brady and desat "events" are being caused by mild seizure activity the doctors decided to start her on a regimine of phenobarbital. The EEGs that Hope has had showed that she is at risk for seizures but no actual seizure activity, however, the EEGs were only run for 20-30 minutes at a time and it's possible that Hope just didn't have any seizure activity during that time.

Hope got goood cuddle time in with mommy and daddy. Hope is allowed to have more toys at her new hospital which makes her very happy - she spends lots of time watching her new ladybug mobile!

Daily Dose, Thursday June 4

Hope, Daddy, and Great Grandma Anderson

Hope and her Great Aunt Dawn


Hope had another big day today. This morning was a bit rough – she had multiple desat and brady events, which caused the doctors to increase some of her ventilator settings. After this, Hope seemed to level out and have a good day.

Hope was awake and alert for most of the morning and afternoon. She spent most of her time looking around and getting used to her new surroundings, but she did manage to get some cuddle time in.

Hope was able to cuddle with Mommy and Daddy, as well as with Great Aunt Dawn and Great Grandma Anderson. This was very exciting: it is the first time that either Great Aunt Dawn or Great Grandma were able to meet Hope. Everyone involved had a great time, and we hope that they will visit again soon.

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, Tuesday June 2

Hope had an highly eventful day today - to say the least.

Early this morning she had an EEG done to measure her brain waves. This came back with the diagnosis of mild to moderate encephalopathy and high risk for seizures, which was consistent with her last EEG in April.

The big news today is that Hope will be leaving Indianapolis early tomorrow morning!!! Hope will be transferring around 7 am to DeVos Children's Hospital in Grand Rapids, MI. Because it appears that mommy and daddy will need to have some help when Hope is able to come home, mommy and daddy will eventually be moving back to Grant, MI where they gew up. In order for Hope to be able to discharge to home in a timely manner it is important that she be in Michigan for at least 5 - 6 weeks to arrange her home nursing, home ventiator, and medical supplies.

Because she will be tranferring, Hope and her parents had to say goodbye to some very close friends. Mommy, daddy, and Hope wish all of the people at Riley the very best. We are grateful for all that you have to done to provide Hope with a happy and healthy future.

Tomorrow we will have Hope's first report from Michigan, her new home.

Daily Dose, Monday June 1

Hope Getting Her Back Patted

Peggy

Hope had a good day today - a little bit different from most days.

Hope was awake early this so she got to spend some time in her swing. Although she had a good time, she ended up falling asleep for a few more hours.

Hope woke up a couple of hours later and had a great afternoon- she was held and cuddled not just by mommy and daddy, but also by Peggy! Hope seemed to enjoy time with Peggy on her stomach while having her back patted. Hope just kept looking around the room , taking in the change in scenery for a while.

Hope weighed in today at 4170 grams, or 9 lbs 3 oz! She seems to be gaining weight consistently and rapidly now.

Hope's respiratory virus panel from 2 weeks ago finally returned results - it seemed Hope suffered from a virus called CMV. CMV is a common cold virus, and requires no follow up treatment. It looks like has officially kicked this now, and is feeling better every day!