Hope Vivian Robinson

Not Ready Yet

2012-01-13T17:55:00.007-06:00

Well, this week hasn't gone exactly according to plan. Late last month Hope's trip to Ann Arbor to get her trach out was rescheduled from January 12th to January 9th so bright (well actually really dark) and early on Monday morning we (Hope, Grandma Robinson and Mommy) packed up the car and headed to Ann Arbor. Hope was scheduled to check-in to pre-op at 9am. They took her back into pre-op around 9:45 and then back to the operating room around 10:15. By 11:15 she was in recovery and we met with her ENT dr. He said that he removed a piece of scar tissue from her airway and after he did that her airway looked perfect. He was ready to proceed as planned - cap her trach overnight, observe her and if she did well then on Tuesday morning we would pull her trach out.

A few minutes later we were able to join Hope in the recovery room. She was pretty groggy and was slowly coming out of the anesthesia. The recovery room nurses worked on getting her ready to go to her room in the ICU, but when they called up to the ICU they said they didn't have a room available at the time. They weren't sure when they would have one. Since it was likely going to be a while the nurses got a dvd player and some movies for Hope to watch.

Hope watching a dvd

Since the bronch looked so good the next step was to cap her trach. After a couple of hours of waiting in the recovery area her doctor came by and decided to cap her trach before we got to a room (since it was taking so long). It didn't go well. Once they capped the trach Hope started struggling to breath. She has had her capped for many months at home now and her doctor thought she might have been struggling because her airway was swollen and irritated from the bronch. They took her trach out and looked at her airway with a scope to see if a clot had formed from taking the scar tissue out but the airway looked good. They decided to give her some time and try the capping again later.

Well, 10 hours after arriving in recovery, yes, 10 HOURS - we finally had a room for Hope. Because she was being observed in the ICU we were not allowed to be with her while they settled her in the room, we had to wait in the waiting room. About 10 minutes later we were allowed to go into her room and when we arrived her nurse told us they had tried to cap her and that "she had failed". We were livid! We were not told they were going to try to cap her at that point, we were not allowed to be present and the nurse and respiratory therapist who did the capping did not know about any of Hope's issues (she struggles sometimes with the capping if her head is not positioned well). After getting very irate with the nurse the doctor was called and we tried capping again. This time Hope did well with it and continued to do well the rest of the night.

In the morning we talked to the doctor and he was comfortable proceeding with the trach removal. A short while later several doctors surrounded Hope's bed and removed her trach (this is a non surgical procedure where the trach tube is simply unhooked and removed). Hope immediately began to struggle and panic so the trach was put back in. We believe that this was partly because Hope was not ready to have it out and partly because she felt frightened and agitated in the situation.

In any case, the doctor is not comfortable with the trach being out yet. He thinks that while her airway looks perfect perhaps the exterior structure of her trachea is weak. We are meeting with him on January 27th to discuss what the next step will be. He says that ultimately getting the trach out is still the plan. We will keep everyone posted.

Hope and Daddy

Big Days and Delays

2011-12-14T11:22:00.004-06:00

Well Hope had a big day last week - she had a birthday and turned 3! She celebrated with a bunch of helium balloons.

Also Party hats and noisemakers. Everyone shared a meal of Hope's favorites which included squash, green beans and applesauce.

She got lots of gifts and cards. It was a great day!

As you know Hope was supposed to go to Ann Arbor on Monday to have her airway evaluated and hopefully get her trach out. Well Hope, mommy and Grandma Robinson were all packed and ready to go when the phone rang. It turns out that the doctor that was going to do the procedure had gotten injured and was unable to do the procedure. We have now been rescheduled for January 12th. This was a but disappointing but the silver lining is that Hope gets to continue to see her nurses each night for a while longer. This will also give Hope a couple more weeks to get even stronger and hopefully there is that much more chance of things going successfully.

Hope is still staying (with Mommy and Daddy) at Grandpa and Grandma Robinson's house while her house is being added on to. Hopefully the construction will be all done in January.

Hope is planning a big trip in a little over a week. Hope is headed to North Carolina to see Grandma and Grandpa Holtz, Uncle Corey, Aunt Kim, Uncle Jeramy and her cousins Cody, Allie and Lily. Hopefully the roads are good for the long trip!

Big days ahead

2011-11-10T14:50:00.004-06:00

Well there are a couple of big days coming up. The first is Hope's birthday - she will be 3 this year! It's so hard to believe! The past three years have been quite an adventure!

The other big day coming up for Hope is December 12th & 13th. On December 12th Hope will be going to U of M to have a bronchoscopy done. Assuming this goes well they will admit her and then cap her trach over night. If she does well with her trach capped overnight then...... HER TRACH WILL COME OUT THE NEXT MORNING!! :)

The doctors will observe her one more night and if she does well Hope will get to come home trach-free!!!!

Hope has been on a bit of an adventure lately. Her bedroom is getting a bit bigger and we are adding a nice large bathroom with a large shower that can accomodate a wheelchair. In order for all of this to happen Hope, Mommy and Daddy are staying with Grandpa and Grandma Robinson while the messy part of the construction goes on. Last week we packed up Hope's bed and toys and headed down the road.

Even though she had to bundle up, Hope still thought it was so much fun because she got to be pulled in her wagon....

Behind the trailer, which was being pulled by the lawnmower!!!

Believe it or not, Hope was not a ladybug for Halloween!! Ok, it was really Mommy and Daddy's fault for not getting into Halloween this year. As a last minute effort Hope dressed up in her suit that had ears on the hood. Mommy drew some whiskers on her face and gave her a little red nose. Everyone decided that mommy should definitely not become a makeup artist!

Great Summer

2011-10-11T21:40:00.007-05:00

There hasn't been a lot of new things going on with Hope over the last month but definitely some very BIG things. On September 1st Hope had a bronchoscopy done. She was put under general anesthesia and her Ear, Nose and Throat doctor took a look at her airway. The main reason Hope got her trach was because her airway was under-developed (because she was born so prematurely). This is a condition that for most kids resolves on it's own over time.... and for Hope it seems it finally has! The doctor said her airway looks completely normal!

With this wonderful report we were able to take the next step toward getting the trach out. So a few days after the bronchoscopy we began capping Hope's trach. To do this we simply put a cap on the end of the trach which forces her to breathe through her mouth and nose. We started out just a few minutes a day and quickly added time with each day. The goal was to have the trach capped whenever Hope was awake. We made up to 8 hours and then Hope got sick. We weren't sure if it was a cold or if it was the same type of bug she had back in July so we started her on some antibiotics just to be safe (didn't want to let it get bad if it was the same thing she had in July). Unfortunately it meant we had to stop capping her trach for about a week.

Thankfully once she felt better we were able to start capping again and very quickly made it up to all day capped. Once Hope goes all day with her trach capped for three weeks then we will call her ENT doctor and schedule taking the trach out. As of today we are on day 5 :) For the most part Hope does great with it but because the trach is still in place in her airway it does make it more difficult to breathe than it would for the rest of us. She sometimes panics because it's hard to breathe but once she calms down or gets distracted she breathes normally again.

With just over 2 weeks left of capping we are hoping to be able to schedule the trach coming out yet this fall!

A summer of firsts

2011-08-23T15:27:00.015-05:00

This has been a very busy summer for Hope. She has had many "firsts"....

HER FIRST VACATION/LONG CAR TRIP

A few weeks ago mommy, daddy and Hope packed up into the car and drove to North Carolina to see mommy's family. It was a 14 hour drive and it took two days to get there so Hope got to stay in a hotel and have a queen sized bed all to herself. This isn't her first stay in a hotel though (her first was last fall in Indianapolis). In North Carolina Hope got to see her cousins. She had met Cody and Allie before but she met Lily for the very first time. They were instant friends :)

Hope & Lily

Cody, Allie & Hope

Allie & Hope

She also spent some time with Uncle Corey, Aunt Kim and Grandpa & Grandma Holtz. It was a short visit but everyone had a wonderful time!

HER FIRST CAMPING TRIP

Just this past weekend Hope, mommy, daddy and Grandpa and Grandma Robinson all packed into the motorhome and went camping for the weekend at Mitchell State park in Cadillac. Hope got to ride around the park in her wagon and she watched people fishing and boating and swimming. She loved being outside so much!!

HER FIRST TIME IN THE SWIMMING POOL

While in North Carolina Hope got to put on her cute bathing suit (of course from Aunt Emily) and go into the big swimming pool. She stayed in the shallow end because she didn't want to get water in her trach but she loved floating and splashing in the water.

Splashing in the pool with mommy

Lounging by the pool after swimming

Hanging out by the pool with Grandpa and Cody

HER FIRST RIDE ON A CAROUSEL

One nice Saturday mommy and daddy had some errands to run so they took Hope along with them to the mall. While they were there Hope and daddy had a ride on the carousel. It was a lot of fun :)

Riding the carousel with daddy!

HER FIRST TIME ON REAL PLAYGROUND EQUIPMENT

While Hope was camping this weekend she rode past the playground many times. On the last day Hope and mommy decided to go down the slide..... let's just say it was a great idea.... in theory anyway. Mommy suddenly had a small fear of heights (yes the height of a playground slide) and couldn't figure out how to get seated with Hope in her lap.

Alright, we made it to the top, now how exactly to we do this? (Yes, that is grandpa peeking from behind. He climbed up to help. At one point daddy climbed up the front of the slide to help too.... that was a real kodak moment but the photo is on grandma's camera)

Whew, okay, we are ready to go!

Weeeeee - okay, maybe not as enthused as mommy expected
Oh well, mommy had fun :)

After the slide we spent some time on the swings but that was old news to Hope because this summer she got....

HER FIRST TREE SWING

Earlier this year Grandpa Robinson and daddy put a tree swing up for Hope. She loves it because she gets to be outside and swing much higher than in the little swing in her bedroom.

Playing with daddy in the tree swing

HER FIRST BIG-GIRL SHOWER

Up until this summer Hope took her baths in an infant bathtub that we filled with water and put on the floor of her bedroom. She had outgrown the tub for quite some time and she had taken a liking to splashing water all over the place so we had to line her floor with towels. As you can imagine this made bathing quite a task. This summer Hope got her very own bath chair. It fits into the bathtub and we can now give her a bath or attach the base to raise her up higher and give her a shower. Hope absolutely loves the feel of the shower water - she laughs and giggles the whole time!

And now.... one of the most exciting firsts of this summer is....

HER FIRST TIME USING HER VOICE

Because of the trach, Hope is unable to use her voice the way most people would. The trach allows her air to escape before it reaches her vocal chords. Well at the beginning of August Hope got a valve that we can put on her trach. This valve allows her to inhale regularly but then it closes when she exhales which forces the air up past her vocal chords and out of her mouth. It has been so wonderful to hear her start to learn to use her voice. Here is a video of Hope during one of therapy sessions :)

http://www.youtube.com/watch?v=_QX-AS7pKFE&sns=em

Update on Hope's Hospital Visit

2011-07-20T10:08:00.004-05:00

Hope is still at Motts since her admission on Monday. She has had a lot of tests done and everything came back normal, which is good, but frustrating. Yesterday, neurology started a long term EEG. They are hoping to catch one of Hope's breathing episodes during the monitoring. The EEG could last over 24 hours and then after that they may do a sleep study. It looks like Hope could be there a few more nights, but hopefully that will help them find some answers.

Hope is very thankful for everyone's thoughts and prayers and she is doing her best to tolerate all the extra attention.

Hope laughing with her mom during her EEG

Hope's Hospital Visit

2011-07-19T09:57:00.002-05:00

Hope could use some extra prayers right now. She is currently in Ann Arbor at the University of Michigan's Mott Children's Hospital.

As you know, Hope has been off the ventilator and doing fantastic breathing on her own! However, on Sunday morning, Hope had a little episode where she stopped breathing completely and had to get assistance from Mom & Dad. They ended up taking her to the Emergency Room, but she had stabilized by that time and really just enjoyed all the attention from the doctor's and nurses at the hospital. The doctor's said Hope could go home and gave instructions to "watch closely", as if that has EVER been a problem!! Clearly they don't understand we can't take our eyes off this cute little girl!

Then yesterday (Monday), Hope had another episode in the morning where she just wasn't breathing. So Mom got her back up and breathing, called the doctors (as well as Dad and Grandma & Grandpa R) and the doctors at Motts said they wanted to see Hope, STAT! So everyone loaded up the car and they headed down to Ann Arbor yesterday. Hope has been enjoying her hospital stay, loving the attention she is getting from everyone, being cute, per the usual. Unfortunately, the doctors needed Hope to stay overnight for monitoring. They aren't sure what is causing these episodes so they are running more tests today and hopefully we'll have some answers soon.

Keep Hope in your prayers!

Let's play a game

2011-07-07T17:19:00.005-05:00

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)

Lots of progress

2011-06-02T09:50:00.005-05:00

It is so nice that the weather has finally warmed up enough that we can get outside!! Hope loves to be outside! Now that she is free from the ventilator during the day it is much easier to go outside with her. Last year in order to go outside we had to switch her from her bedside ventilator to the travel ventilator, hook up a tank of oxygen, take her suction machine and travel bag and somehow figure out a way to take all of this outside with us. As you can imagine, we didn't make it outside any too often. This year it's as simple as plopping her in the wagon and heading outside. She doesn't need the oxygen or the ventilator and now that she's more stable we don't take the other bags outside with us. Hope just loves to go for rides in her wagon. She loves to feel the bumps and get the fresh air in her face.

Last Thursday Hope went to see her ophthalmologist. Normally when she goes the doctor quickly holds a few toys or other objects up in front of her face for just a second or two and makes a determination on her ability to focus, follow, track etc based on that. It can be a little frustrating because it takes Hope a little longer to process things. This time her vision therapist went with us to the appointment. Before the doctor came in the therapist got Hope all set up watching a simple vision therapy dvd (basically a slide show of some of the images the therapist has been working with Hope on). When the doctor came in he was able to see Hope focusing and watching the dvd. This was so very helpful! The doctor thinks Hope's vision is improving and he wrote her a prescription for lenses that are not quite as strong as the ones she has now.

The big news for Hope is that she continues to do well with her ventilator weans. She is currently on pressure support (this is where she has to initiate all of her breaths, the ventilator just gives her the pressure behind it) for 4 hours each night. We will continue to increase this every couple of days and once she is on pressure support all night we will begin to leave her off of the ventilator at night. We will start with two hours and increase every 3-5 days. Assuming all goes well the vent team at U of M are hoping to have Hope completely ventilator free by August when she sees them again. If at that point Hope is doing well we will get the blessing to see about taking her trach out! We weren't expecting them to suggest this until next year so this is a wonderful surprise. Once Hope has her trach out life will be so different! Go Hope! Go Hope!!

Happy Easter!

2011-04-25T15:31:00.005-05:00

All smiles for our first outing this year

The last few weeks have been a bit rough around our house. First Andrew got sick with a nasty cold and then hope came down with a cold. At that point we had weaned her to the point of being off of the ventilator all day. Unfortunately the cold knocked the wind out of her sails and she needed to be back on the ventilator full time. She even got to the point of needing some extra oxygen to help her keep her oxygen levels up. Based on our past experience we were pretty well resigned to the fact that hope was likely going to wind up hospitalized because of this bug, however, her vent team at U of M was amazing! We kept in contact with them by phone and email and they advised us as to what to watch for and how to help Hope through this. Thankfully Hope DIDN'T need to be hospitalized! She is feeling much much better now and we are in the process of weaning her off of the vent again. This time it will be a much faster process than it was before because she has already been down that road (we are adding an hour each day rather than each week)

We hope that everyone had a nice Easter. Unfortunately daddy is sick again so he didn't get to go with Hope on her first outing of the year. As you all probably know we keep Hope on "winter lockdown" during cold and flu season. With her compromised respiratory system we just can take the chance of her catching something. This lockdown also includes not going to church with mommy and daddy on Sundays. Easter is the first time that Hope gets to get out and go to church again. She was all dressed up in her easter dress and very excited to see everyone. Everyone at church was very happy to see her! Since she wasn't on the ventilator she sat in mommy's lap for a few minutes but then since Aunt Emily was visiting she quickly snuggled in with her and took a nap through church.

After church Hope went to Grandma and Grandpa Robinson's house to have lunch. After lunch Hope dressed up in her bunny ears. Grandma Robinson had a bunny teeth sucker for Hope to dress up with too. The ears went over well..... The bunny teeth sucker? Not so much.

I haven't looked back through the old blog posts in a while now but I knew we had a post of Hope on her first Easter. I thought I'd post this picture just to show how far Hope has come. This was Hope's first Easter, two years ago...

All Day Vent Free!

2011-04-03T18:50:00.006-05:00

Hope has made great progress on her ventilator weans. She is now off of the ventilator all day (even when she naps). She is still on it at night so she can rest without worrying about working to breathe. The freedom is so wonderful! (Now if the weather would just warm up already so we can get outside!!)

We went this past Thursday to the neurologist to follow up on the video EEG that Hope had a couple of weeks back. They determined that the jerking movements we were seeing are indeed seizures. This wasn't really a surprise to us - we fully expected to get that news. They've started her on a new drug that will hopefully keep the seizures from happening. So far it seems to have done the trick She's been on the new medication about 3 days now and we haven't seen the jerking movements at all. She will have a follow up EEG done in about a month to see if that shows that the seizures have stopped.

Moving Right Along

2011-02-25T08:14:00.003-06:00

Yum - squash!

Loving being vent free!

Hope and Daddy hanging out

Hope has continued to make great progress with more and more time off of the ventilator. She is now up to 3 1/2 hours twice a day off the vent and today we will go up to 4 to 4 1/2 if she tolerates it. She loves being vent free and sometimes gets mad when we put her back on the ventilator. Like a typical 2-year old she will often grab the tubing, disconnect it and throw it on the floor!

Last week we went for a cochlear programming appointment. When they tested Hope's nerve response we found that Hope loves sound LOUD. The louder the test got the happier Hope got. She started out smiling, then giggling then outright laughing at the louder sounds! We tried her in the sound booth again (something we haven't done since she's had the implant). Prior to getting the implant when they put her in the sound booth and played sounds Hope didn't really respond at all. This time she laughed at every sound they played. What a remarkable difference!

February has been a month of many trips to Ann Arbor. Two weeks ago we went to U of M for a video swallow study. Hope had an appointment earlier in the day with her cochlear implant surgeon. He was happy with how everything looks. By the time we got to the swallow study though, Hope was ready for a nap and just wanted to sleep. She struggled with the swallow study. To do the swallow study they give her barium by mouth and watch on x-ray what happens. Since Hope was so sleepy she didn't do well with thin liquids. We are going to keep practicing with some thickened liquids and pureed foods and try the study again in the future to see if she will do better next time.

Hope was scheduled to have a video EEG done earlier this week but a snow storm kept us home instead. We will be rescheduling the test for sometime in the future.

For now we are all looking forward to warmer weather when we can get outside and run around without the ventilator! Hope thinks a tree swing sounds like fun!!

Major Progress!

2011-01-22T18:32:00.005-06:00

Hope has made some amazing progress in the last few weeks! A little over a week ago we went to U of M for Hope to have a feeding evaluation. Since Hope is on the ventilator, eating by mouth would require some extra coordination beyond what is typical. The vent is pushing constant air pressure into her throat and lungs and in order to protect her airway when she swallows Hope needs to put forth extra energy. Because of this the biggest concern for her eating by mouth while she is on the ventilator is the risk of her now swallowing properly and getting food/fluid into her lungs. At U of M we thought they were going to do a full swallow study but they didn't. Instead they dyed some plain water blue and gave Hope a small amount from a spoon. Afterward we suctioned her trach to make sure she didn't take it into her lungs. No blue came out so that was a great sign. Next they dyed some applesauce blue and gave hear a small amount from a spoon. Once again we suctioned and once again - no blue! Yay Hope! Because she did so well with these "unofficial" tests Hope was given permission to have a small amount of water and pureed foods by mouth each day. We will go back to U of M in February for an official swallow study and depending on how she does we will see how much she will be able to start eating by mouth.

That is vey exciting progress but it is nothing compared to the progress Hope made yesterday.

We had been waiting for some blood work to come back before we made any more progress on weaning the ventilator settings. The blood work came back this week and it was perfect! Onward with the vent wean! We got the email with the wean order yesterday morning and we were so happy and excited at what the next step was. Hope was going to be OFF the ventilator completely for 20-30 minutes twice a day!!!

Yesterday evening we tried it for the first time. We disconnected He and turned off the ventilator. We have gotten VERY accustomed to the sound of the ventilator just being part of our everyday sounds so when we turned it off the silence was very very eerie. Hope was tube and wire free for pretty much the first time in her life! It was so exciting.

Look - no tubes!!!

Running through the house - just because we can!

Yay Hope!!

Merry Christmas & Happy New Year!

2011-01-03T08:12:00.007-06:00

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!

2010-12-13T13:31:00.008-06:00

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!!

Hope's New Glasses

2010-11-23T15:22:00.004-06:00

TA - DA!!!!!

Hope has her new glasses! We were supposed to pick them up last Friday but Hope hasn't felt well for the past several days. She has been cutting 5 or 6 teeth all at the same time and she was pretty miserable with it. So on Monday Hope, Mommy and Grandpa Holtz went and picked up Hope's glasses. Grandpa Holtz bought Hope some bling (a pink boa and a sparkly bracelet) to go with her new specs :)

Hope doesn't seem to mind her new glasses at all. It's hard to tell how well they are helping her but she definitely seems to be looking around more and trying to "look" at things. She doesn't try to pull them off like she does her cochlear implant - she must know how sophisticated she looks :)

Grandpa Holtz had to fly back home to North Carolina today and Hope misses him a lot but is really excited that both Grandpa and Grandma Holtz are coming to visit her next week.

Standing and Seeing

2010-11-12T08:39:00.002-06:00

On Monday Hope's physical therapist brought out a device to help Hope stand up. We put shoes on her feet to help support her feet the first time she tried it and between the standing up and the shoes she wasn't too sure about the whole thing. She's tried it a couple of times more (without shoes) and seems to be getting more and more accustomed to the idea. This is a great way for Hope to strengthen her legs, ankles and feet. She seems SO tall when she is standing up in it!!

An artist cannot be told what to paint!!

This isn't a gruesome as it looks. Hope was finger painting a pumpkin cutout with her therapist this week..... Well that was the intent anyway. Hope thought it would be a better idea to paint herself and she covered her chest, belly and face in orange finger paint. A little bit did make it on to the paper... one of Hope's new masterpieces :)

Hope went to see her eye doctor on Tuesday and he wrote a prescription for Hope's first pair of glasses. She went on Thursday to try some on and pick out the perfect pair. Keep an eye out in a week or so for a peek at her fashionable new specs!

Happy Halloween

2010-11-06T13:34:00.002-05:00

So I'm sure everyone is wondering what Hope dressed up as for Halloween. Well....... A Ladybug of course! :) Actually she had her pick from several costumes - a bee, a flower, santa claus, a witch....but the ladybug costume fit just right! :) She didn't go out trick-or-treating but is looking forward to doing that someday when she is off of the ventilator.

HAPPY HALLOWEEN!!

Sleep Study Update

2010-10-28T12:46:00.002-05:00

Hope's sleep study went very well. When we arrived we were asked what time Hope normally goes to sleep. She normally doesn't go to bed until somewhere between 10pm and 12am. She sleeps about 6-8 hours each night and then takes an hour or two nap in the afternoon. This kid doesn't need much sleep. The technician wanted to capture 6 hours of data and so they wanted to put Hope to bed sooner than her normal bed time. At about 8pm they started hooking up all the electrodes and so Hope really couldn't get out of bed after that point. She is used to being cuddled and rocked before her 10pm bedtime so she didn't like not having that.

She cried and whined until about 11 pm and then fell asleep about 12am. They turned her oxygen off and turned her vent pressure down from 12 to 8. Hope didn't even notice. We figured that in order to get all the data they wanted we would be staying the full time (until 7am). Hope had a different idea though. At about 3am Hope woke back up. We tried to let her fall back asleep until about 4am at which point they decided to end the study. They felt they had plenty of "proof" that she did well with everything, so we packed up and headed home.

We haven't heard from her pulmonologist yet to formally discuss the study but they paged the doctor and they were comfortable sending Hope home on the reduced settings. We don't know what the official plan is from here but the next step is to schedule a bronchoscopy for Hope to see if her airway is less floppy than it used to be.

Hope's 300th Blog Entry

2010-10-25T22:54:00.006-05:00

In honor of the 300th post on Hope's blog, I decided to post some recent pictures of the cutiepie herself. Please, brace yourself, there is about to be a cute overload!!!!

Hanging out with Great-Grandma

Hello, I'm waiting for some food to taste

Hope's Mommy put some of Grandma R's applesauce on Hope's tongue... her eyes got HUGE and then....

Super big smile. She LOVES the applesauce (rightfully so)

The. Cutest. Girl. EVER

I think this was mid "bouncey bouncey"

She just doesn't stop smiling

Aunt Em, you are so funny!

Hope is SOOO big

So much fun and cuteness... Hope must sleep

Sleep Study

2010-10-19T22:06:00.002-05:00

Hope is in the middle of a sleep study as I type.... although as you can tell from the picture, she's not so keen on the sleeping part of the sleep study. Truth be told, she's not so keen on the entire idea of a sleep study. The black band on her head is covering the 10-15 electrodes that are stuck all over her head. She's had them on for about 2 1/2 hours and has just recently stopped crying about the whole situation.

The point of the sleep study is to lower her ventilator setting and see how she does. They've lowered her PEEP (the pressure that is in the circuit when she exhales in order to help keep her airway open) from 12 to 8 and she is doing great with it. They've also turned off her oxygen and she is doing great with that change too. Now if we could just get her to sleep.... :)

2010-09-16T14:36:00.003-05:00

Hope took her first vacation this past weekend! On Friday afternoon Hope got packed up with all of her equipment and headed to Indianapolis with Daddy, Mommy and Grandpa Robinson. This is the longest car trip Hope has ever taken.
On Saturday we all headed over the Riley Children’s Hospital for their annual NICU family reunion. Hope got to see several of the doctors and nurses that took such good care of her shortly after she was born.

Hope with Daddy & Mommy at the NICU reunion

Nurse Deb!

Dr. Allen!

On Sunday morning Hope visited the church that Mommy, Daddy, Grandpa R and Grandma R often went to when they were in Indianapolis. This church is MUCH bigger than the church she normally goes to and the pipe organ was MUCH louder so we took her cochlear implant off for much of the service.

After the long drive home Hope was exhausted and so very happy to stretch out in her own bed. She fell sound asleep the minute she got home. All in all it was a very successful trip!

On another note – Hope has continued to travel to U of M for regular cochlear programming appointments. They have continued to increase the volume on her implant as she continues to adjust to sounds. She seems to enjoy hearing sounds although she continues to try to pull the implant coil off of her head. She loves to pull it off and laugh when someone puts it back on 

One Year at Home

2010-08-27T20:26:00.004-05:00

Hope tucked in for the night

It's so hard to believe, but Hope has been home and out of the hospital for a year now. It has been a wonderful and adventure filled year that included:

* Weaning off many of her medications. When she came home from the hospital, she was on about 50% more medications than she is now. She needs half the breathing treatments that she was getting when she came home.

* Seeing fewer doctors and seeing the ones she does still need less often. Hope no longer needs to see the neurologist and she sees her kidney doctor, urologist, developmental pediatrician and ear, nose and throat doctor only twice a year.

* Getting into a real bed time routine and sleeping through the night. It was a long time in the making but Hope now sleeps through the night. Since she has a nurse with her at night she often thought it was playtime whenever she wanted. Now she has a solid bedtime routine and knows when it's time to go to sleep.

* Lowered ventilator settings. Although it's been slow progress Hope has made steady progress this summer getting her ventilator settings lower. She hasn't struggled with the lowered settings at any point and we continue to shoot for getting rid of the ventilator all together.

* Lowered oxygen. When Hope came home she was still experiencing the occassional desat episodes that scared us so many times in the hospital. She hasn't had one of these in many many months and is on only a trace amount of oxygen (and really doesn't need that).

* Growing big and strong. Hope was measured today and is 30 inches long! She's growing longer and leaner every day.

* Staying healthy. Hope only had one re-admittance to the hospital. She was able to stay cold and flu free all year!

... And one of the big accomplishments of the past year.....

* Hope can hear! Having the cochlear implant done in July and activated last week, Hope has done really well adapting to hearing.

It has been such a wonderful year. We all feel so blessed to have Hope home with us each and every day. We are looking forward to the many accomplishments of the next year!! :)

Hope can hear!

2010-08-18T12:28:00.003-05:00

After Activation

Hope can hear!

We got a call first thing Tuesday morning (the day of the activation) and learned that the audiologist that was going to do Hope's activation was out of the office sick. We were given the option of either waiting until Thursday or the director of the program was offering to do the activation at 2:30 (just a little later than the originally scheduled appointment). We decided to do it at 2:30 because Andrew had taken the day off and we didn't want Hope to have to wait any longer than she already had.

We had smooth sailing until we got to Brighton where the expressway was closed due to an overturned semi-truck that had apparently spilled battery acid all over the road. We called the office to let them know our situation and thankfully they were willing to wait for us. Finally we arrived (2 hours later than the scheduled appointment).

The external portion of Hope's implant was put on her head and connected to the computer. Dr. Zwolan then ran some tests to see at what levels we thought Hope might be detecting sound. The computer would play three beeps and then we would look for a response from Hope. We weren't sure what we would see, whether the sound would surprise her, scare her, make her laugh... well we definitely got a response..... She cried and screamed. Hope didn't not like sound at first.

Once we determined what level Hope was detecting the sound at, her implant was set at a lower level to allow her to adjust to sound. We will slowly and gradually increase these settings over time to get her used to sound.

Hope is also working on improving her fine motor skills. She has made a game out of reaching up, grabbing the processor and coil and pulling it right off of her head. She definitely knows how to get what she wants! :)

We are all so thankful and happy and want to thank everyone for all of their prayers. We go back to Ann Arbor on Thursday for a programming adjustment and will let everyone know how Hope does figuring out her new world full of sound!

(Grandpa Robinson took video of the activation but I haven't figured out how upload it onto the computer yet. As soon as I do I'll post it.)

Making Progress

2010-07-21T08:02:00.004-05:00

Hope with Great Grandma Anderson

Hope & Aunt Emily

All healed up

Hope has had a wonderful couple of weeks. As you can see from the picture, the incision from her surgery has healed to the point you can hardly even see it. She saw the surgeon at U of M last week and he was very happy with how it all looks. The big activation day is just a couple weeks away now!

Hope has also made great progress on the ventilator. At her appointment with the pulmonologist we put together a plan to begin weaning Hope's ventilator settings on a regular basis. On this wean we took her rate from 31 breaths per minute down to 29. She has done very well with it and if she continues to do so, we will lower the rate by 2 every two weeks. After she reaches a rate of 21 we will begin to lower the PEEP (the amount of pressure that the vent gives her continuously to keep her airway open).

Hope is also now on less oxygen. She has done great with that as well. In addition to ALL of this Hope is now getting only 2 breathing treatments each day. This makes her very happy because she really doesn't like getting the breathing treatments.

All of these changes are little steps towards getting Hope off of the ventilator - which goes without saying, would be WONDERFUL!!

Post Surgery Update

2010-07-03T15:29:00.003-05:00

Hope made it very successfully through her cochlear implant surgery. She arrived at U of M and check in around 12:30pm on Thursday. After getting all checked out (blood pressure, temperature, weight etc) we found out that they had not reserved a bed (room) for her following the surgery. There was a scramble to find a bed and when we came close to not being able to find one for her we almost had to pack up and come home. That would not have made anyone very happy! Eventually though (about 2 hours later) they had a bed for her and Hope was wheeled off for surgery.

The surgery began with a test that involved putting needles in her ear and electrically stimulating her auditory nerve. They began with the right ear and found no response. Then they tested the left ear. They had to use more "power" than usual but were able to get a good clear response on the left side. However, they found that as they repeated the stimulation the response diminished. This is called "Adaptation". Unfortunately there isn't a lot of research or knowledge available on this condition. The surgeon felt that it was still worth proceeding and that Hope would still be able to gain access to sound by having the implant done.

Hope's mom, dad, Grandma Holtz, Grandpa Holtz, Grandma Robinson and Grandpa Robinson all waited patently in waiting area for the next 5 hours while the surgery was performed. Everyone was very eager to see her after the surgery and she looked great! She was a bit groggy but seemed to be feeling well. Hope had to stay one night in the hospital but was released the next morning. Although she has been a little more sleepy than usual, she is feeling well and is mostly back to her normal self. There is just a small incision behind her left ear. She will go back to see the surgeon again in two weeks and the big day of activation is August 17th!

Hope's Tribute to Father's Day

2010-06-23T14:24:00.004-05:00

Hope wanted to show everyone about all the special fathers in her life since she only was able to spend time with Daddy and Grandpa R on Father's Day.

Hope and her Daddy

Hope and Grandpa R (spending quality time after Grandpa R's long trip)

Hope with Daddy and Grandpa R

Hope with Grandpa H (a few months ago)

Hope with Mommy and Great-Grandpa H

Hope and Great-Grandpa H

Hope especially wanted to include pictures of her and Great-Grandpa H. Sadly, Great-Grandpa H passed away yesterday, but Hope is soooo glad that she got to meet him a few times while she was still in the hospital and that they got some good pictures together that she'll be able to look at when she gets older.

Daily Hope: Friday, June 11, 2010

2010-06-11T14:34:00.002-05:00

Hope is doing great! Her vent rate was weaned to 31 and she has been doing very good with it. Today Hope, along with Mommy & Daddy and Grandma R., are in Ann Arbor for Hope's final pre-surgery visit. Hope will be meeting with the surgeon for her final consultation before her big day in a few weeks.

As you can see from the picture, Hope is figured out how to grow tall!! She is now 28 1/2 inches tall! Grow Hope Grow!!

Hope loves to jump

2010-06-01T11:17:00.004-05:00

Hope has discovered one of her favorite things to do is jump up and down. It started with one of her therapists helping her to jump while they were sitting on the floor. (Obviously Hope needs a lot of help with this and it basically amounts to lifting her up and bouncing her off of her feet on the floor like she is jumping). She just laughs and smiles ear to ear when she does this. Well, since Hope is over 26 pounds now you can imagine that your arms tire long before Hope does, so Hope now has a doorway jumper to help her with this activity. The first time she tried this out she kind of just hung out not really sure what to do. Yesterday, however, was a different story. Here's a video of Hope in her jumper. She did this for over 45 minutes!! She hasn't quite mastered getting off of the floor yet but she sure is trying!!

Long overdue update

2010-05-24T15:05:00.005-05:00

Hope loves the outdoors and now has some stylin' shades to wear while she relaxes in the sun

Hope & Daddy sitting outside enjoying the apple blossoms

Lovin' bathtime!!

Well it's been so long since we've had a good update on Hope that I can't even remember all the stuff I need to write about...... The VERY big news is that all of the insurance paperwork has been cleared and Hope has a surgery date for her cochlear implant - JULY 1st!! We have one more finally consultation with the surgeon on June 11th. We are all a bit nervous just because it's surgery but very excited about the possibilities that this will open up for Hope.

So the time line is this: July 1st Hope will have the surgery to place the internal portion of the implant. This is the portion that receives the electronic info and sends it to the auditory nerve. About 4 weeks after the surgery (so around the beginning of August) Hope will make another trip to Ann Arbor to have the external portion of the implant/device activated. This portion attaches to the internal portion via a magnet and is removed when she sleeps, bathes etc. The audiologist says in the beginning what Hope will hear will be very electronic and "clicky". She will have to go back regularly to have the programming adjusted and over time if all goes well she should be able to hear voices and music and all of the sounds we normally hear.

No new changes have been made to Hope's ventilator settings. Around the time that we were going to make the latest changes Hope had some blood work done that showed she needed to stop taking her diuretic. This is good news in the overall scheme of things because it means one less medication, however, it made the pulmonologist nervous to get rid of the medication AND make ventilator changes at the same time. We are now hoping to make another wean towards the end of this month.

On a lighter note, as you can see from some of the photos, Hope has been getting outside more now that the weather is warmer. She loves to ride in her wagon and to sit and watch mommy and daddy work in the garden!

Growing Hope

2010-05-14T12:45:00.005-05:00

Just a few pictures to keep you updated on how Hope is growing....

Clearly Hope LOOOOVES playing with Aunt Em

Hope and her dad

Hope being silly

Hope got woken up from her nap to go to Great-Grandma's house.... she is boycotting

Hope and Grandma Robinson

Hope was giggling so hard, she was having so much fun!!

Hope and Grandpa Robinson

Two peas in a pod

Hope loves to tell Aunt Em lots of stories

Hope and her mom on Mother's Day!

Hope and Grandma Robinson on Mother's Day

Easter & Doctor Updates

2010-04-14T08:09:00.004-05:00

Hope in her Sunday Dress

All Smiles

Surveying the Easter Bounty

Cuddling with Great-Grandma Anderson

Hope has had a wonderful couple of weeks. Now that we are coming out of RSV season (cold and flu season to the rest of us) Hope is able to get "out and about" more. She celebrated her "freedom" by making a trip to church on Easter Sunday. Everyone was so happy to see her and she was so happy to get all of the attention :)

After church Hope headed up to Great-Grandma Anderson and Great Aunt Dawn's house to see what the easter bunny had left for her there. After surveying all the colorful eggs E.B. brought she headed home for a nice long nap.

Hope had so much fun at church on Easter that she wanted to go back again this past Sunday, so she put on her pretty white dress and her most sparkly shoes and headed back to church. The easter bunny didn't come to visit her again this week, but she was okay with that because she got some good cuddle time in with Great Grandma Anderson instead. Both Hope and Great Grandma were so comfy that they dozed off and tried to skip lunch.

In doctor news.... Hope's latest trip to the pulmonologist was VERY successful. They lowered the amount of some of the medications she is getting and they have begun to lower her ventilator settings. This is the first of many, many small steps to getting Hope off of the ventilator and eventually without the trach. So far Hope has tolerated the changes VERY well. She has to go in for lab work this afternoon to make sure that everything looks good. Hope doesn't like having blood work drawn :( Hopefully the technician will be very nice and gentle.

March 26, 2010

2010-03-26T07:23:00.009-05:00

Hope with Grandma & Grandpa Holtz

Grandpa and Hope showing off her new outfit

Out for a walk

My new pink hat (Thank you Jackie!)

More cuddling with Grandpa & Grandma

It has been quite a month for Hope. Hope spent last week cuddling, playing and visitng with her Grandpa and Grandma Holtz who came to visit from North Carolina. They spent lots of time catching up and Hope was so very happy to see them again.

We were all enjoying the beautiful weather last week and Hope didn't want to miss out so we all ventured out for a walk one day. She wasn't too thrilled about having to wear a hat and bundle up but once she got her pretty new pink hat she didn't mind wearing a hat so much. We are all looking forward to the warmer weather so we can take more walks!

We have made a few more trips to Ann Arbor in preparation for the cochlear implants. Hope, Daddy & Mommy met with the surgeon on their last visit. So far there doesn't appear to be anything that would stand in the way of Hope receiving the implant. We are now just waiting for the final insurance approvals. Once we have those, we will have a couple more final appointments (to pick out the actual implant device and to have a final pre-op meeting with the surgeon) and then the surgery should be scheduled within a month after that.

Hope has several appointments this week. The big one is with the pulmonologist. After Hope's last appointment with the pulmonologist they said that if she was doing as well at this appointment as she was at the last, then they would consider lowering Hope's ventilator settings. This is a HUGE step forward; it will be the first time Hope's ventilator settings will have been lowered since she left the hospital. Pray that eveything goes well.

The other big news that Hope has is......HER FIRST TOOTH has popped through! Actually the second tooth popped through just this morning! She is on her way to a mouth full of pearly whites :)

Wednesday, March 3, 2010

2010-03-03T16:51:00.002-06:00

Hope has had a busy week. She made two trips to Ann Arbor; one on Friday and one on Tuesday. The trip on Friday was quite the adventure for Hope. Hope, Mommy, Daddy and Grandpa Robinson all made the drive to Ann Arbor with no trouble, but while they were there it started to snow. The roads got really bad and it took them all twice as long as it should have to get home. Thankfully they all made it safely. The trip on Tuesday was much better, with lots of sunshine and no snow!

The doctor visits themselves are more of a formality at this point. Hope has to go through some basic hearing tests in the sound booth. They play sounds into earphones in Hope's ears to see if she seems like she is responding to the sound. She also had to meet with a speech therapist to determine her basic level of communication. So far everyone has determined that the cochlear implants are neccessary and wouuld benefit Hope greatly. We meet with the surgeon next week on Friday and then have one more consultation with the audiologist. The surgery hasn't been scheduled yet but we should know more about that before long.

February 21, 2010

2010-02-21T14:07:00.003-06:00

Hope Admiring Herself in the Mirror

Hope has had a very good couple of weeks. She went to the nephrologist (kidney doctor) and many of the concerns that they had previously, we are no longer too worried about. Her blood pressure had been a little high but the doctor thinks it might just have been the inaccuracy of the blood pressure cuffs, so we aren't going to take her blood pressures regularly any more. Also, her latest blood work came back normal which is fantastic. When Hope was hospitalized back in September she had a lot of blood work done then and in the weeks following. Based on that blood work the doctors assumed Hope's kidneys were only working about about 50%. With this latest batch of blood work coming back normal they think that the spike we saw last fall was mostly if not all tied to the infection that hospitalized her and that her kidney function is far closer to normal than we thought.

Hope will be venturing back to Ann Arbor this week to begin her weekly pre-op visits for cochlear implant evaluations. She has to go 3 or 4 times in the next few weeks for evaluations and then once in March to meet the surgeon who will do the implants. Hope is not officially a candidate for the implant yet - she will have to have hearing tests done by the audiologist, with and without her hearing aids. If there is some evidence that she can hear but not well (even with the hearing aids) then she should be a candidate for the implants without further testing. If we don't see evidence of hearing then an MRI might be needed to confirm that her auditory nerve is present and at least some what developed. Hopefully these visits all go well; they make for long hard days for Hope.

Other great progress that Hope is making is that she seems to be reaching for some of her toys. She has grabbed on to a toy and picked it up once and she grabs for the toys in her crib. The is wonderful progress as one of her physical therapy goals is to develop an "active grasp", or taking the initiative to grasp an object instead of just holding on to it because it was placed in her hand.

Daily Dose: Wednesday, February 3, 2010

2010-02-03T22:35:00.003-06:00

Hope's beautiful smile

Hope laughing it up

If she isn't the most beautiful girl in the world, I don't know who is!!! Seeing these pictures of Hope smiling and laughing has given me a little more motivation in my life and reminded me to pick my chin up and keep pushing through.

Now, back to Hope....

Hope is doing well. Things went quite well last Tuesday the long drive to Ann Arbor and the appointment. The appointment itself was rather uneventful as Hope's mommy & daddy really did not leave with any more information than they went with. It seemed to be the necessary introductory meeting for everyone: they had planned to tell us Hope would need a CT scan, hearing aids, etc. Hope has had these for months now, so there was really no new news. We have been told that we will need at least 4 more pre-op appointments with the cochlear implant team before surgery.

Other appointments last week have had more of an impact. Hope's appointment with the pulmonologist on Wednesday went extremely well. The pulmonologist was so impressed with Hope's status that they have begun weaning Hope of most of her respiratory medications, and if things continue to go well they will try to wean Hope's vent settings at our next appointment.

The somewhat less positive appointment was with the developmental pediatrics clinic. Hope was officially diagnosed with cerebral palsy (CP). Although we knew CP would be a likely outcome of Hope's brain injury, we were under the impression that it is rarely diagnosed before 2 years of age and no one was completely prepared for the news yesterday. Evidently, CP is a rather obvious diagnosis for Hope and the doctor felt no need to wait. While no one knows the form or severity of the disease yet, the news did hit everyone pretty hard.

Hope got her RSV vaccination Monday and had to be weighed beforehand. She weighed in at 24 pounds 5 ounces.... just slightly bigger than she was one year ago - 2 pounds 8 ounces!!!! Who would have thought she'd have come so far!!

As you can see from the picture, Hope has been smiling more and more and has even started laughing! It's a silent laugh because of the trach but it is still the most beautiful thing in the world right now :)

Daily Dose: Monday, January 25

2010-01-25T16:13:00.002-06:00

Hope: up close and personal

Sleeping Hope

Hope in the mirror

Hope hasn't had too many doctors visits so far this year, but she has a big one coming up tomorrow. Tomorrow Hope (along with Mommy & Daddy and Grandma & Grandpa Robinson) will all load into the car and, bringing along ALLLLLL of Hope's equipment, will have a day trip. They will be traveling down to Ann Arbor to meet with with Hope's doctors there regarding cochlear implants. It should be quite the elaborate procedure throughout the day with all of Hope's equipment. When Hope is at home she breathes humidified air, but when she is in the car, she doesn't get that humidified air and tends to dry out a lot, which can cause her trach to need more changing or get clogged up, and we don't want that!! Since it will be a pretty long drive, along with the appointment, AND the drive back, Hope gets to take all of her home equipment, but that also means that Hope needed a bigger vehicle to make room for all of her equipment and her "escorts". So tomorrow morning everyone will load into a large SUV that the family rented just for Hope's trip.

In other news, Hope is getting back into the swing of things. Over the holidays she had a break from her physical and occupational therapists. Therapy has started back up again, and even though Hope wasn't overly thrilled at the beginning, she is starting to get back into the swing of things. She is getting so much better at holding her head up which is great!!

Hope is asking for lots of extra prayers tomorrow while the family is on the roads.

Daily Dose: Merry Christmas 2009

2009-12-25T20:25:00.001-06:00

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

2009-12-22T20:45:00.003-06:00

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.

Daily Dose: Happy Birthday Hope!!!

2009-12-07T18:30:00.004-06:00

The Birthday Girl in her Birthday Dress!!

Hope was laughing and having a good time

Hope in her "little room"

First and foremost we are wishing Hope a very very VERY Happy 1st Birthday today!!! It is hard to believe that it has already been a year since Hope was born. Quite the year!!

As you can see, Hope had a lot of fun today. She had a special birthday dress with a pink tutu. She liked it well enough to pose for the obligatory pictures but then it was off with the dress. Hope had such a great day today. She was laughing and smiling most of the day.

You can see Hope in her "little room". Hope loves to play in her little room. It has lots of items that are hanging from the top so she can reach up and grab them, or hit them, or kick them. She spends lots of time in her little room playing with all of the things.

While today was Hope's actual birthday, Hope got a mini-party on Saturday when Aunt Em drove up to spend some time with her and the family. Here are some pictures from Saturday's hoo-rah.

Hope was wearing another adorable ladybug outfit!!

Hope with Mommy & Daddy, getting ready to open her presents

Hope decided against the cake but she wanted cupcakes so here she is with Aunt Em and cupcakes.
After the presents were all opened Hope got to chill on the couch

Hope and Daddy playing on the floor

Daily Dose: Happy Thanksgiving!!!

2009-11-27T23:57:00.000-06:00

After all the food was eaten, Hope & Aunt Em had some playtime

Hope wasn't as interested in the delicious food as the rest of us

Hope looking cute in ANOTHER ladybug outfit

Hope's first artwork: a hand turkey

This Thanksgiving we all were especially thankful. This was Hope's first Thanksgiving and she loved it. As you can see from the pictures, she had a cute little ladybug outfit on, making her officially cute as a bug! Hope slept through most of dinner but she had done the hard work ahead of time. During one of her therapy sessions, she finger painted and made a hand turkey. It is proudly displayed on Mommy & Daddy's refrigerator for all to see!!

Hope is doing well and looking forward to her birthday which is coming up very quickly. She also is looking forward to Christmas because she loves looking at the Christmas decorations, especially lights and tinsel.

As we mentioned before, we are all extremely thankful this year. While we have all had a setback or two in our own lives, Hope has been there to remind us what is important: family. No matter what goes wrong, we always know that we have Hope, and for that, we are forever thankful.

Daily Dose: Wednesday, November 25

2009-11-25T16:59:00.000-06:00

Hope relaxing in her bouncy seat!

Bathtime!!

Hope is smiling!!

Hope has had a busy few weeks doing lots of things. As you can see, Hope is growing!! She is now over 21 pounds!!

Last week, Hope went to get her hearing aids adjusted. She was put in the sound booth and responded to bass tones. This is a big step because in order to have cochlear implants her auditory nerve must be developed. We are very happy that her auditory nerve seems to be developed, paving the way for her surgery.

This week, Hope went to the eye doctor and got great news!! The eye doctor said that Hope can see!! And it will only improve from here. She is far sighted and may need glasses if that doesn't improve but quite often kids like Hope will grow out of the impairment. Hope did very well tracking and locating so the eye doctor was very happy with the progress she has made.

Daily Dose: Wedesday, November 11

2009-11-11T19:18:00.003-06:00

Ever since Saturday when Hope officially became an 11 month old she has been BUSY!!!

On Sunday the weather was so nice that Mommy & Daddy decided to take Hope for a walk. They walked up to Grandma & Grandpa R's house and saw them for a little while.

They then left Grandma & Grandpa R's house and went to visit with Great-Grandma Vivian & Aunt Dawn. As you can see, Great-Grandma Vivian and Hope Vivian had a lot to talk about. Both of them really enjoyed their little visit.

Hope is becoming such a big girl. Today she did some finger painting. She thought it was fun at the beginning and played along. But....

As you can see, at the end of her paint session she wasn't feeling so artistic. At least she was able to make a finger paint turkey before her inspiration ran out.

In other news... Mommy & Daddy are still in contact with a surgeon to do Hope's cochlear implants and are hoping that next spring they can have them done.

Happy Halloween!

2009-10-31T18:41:00.003-05:00

Just because it's cold and flu season and Hope couldn't go out trick or treating, that wasn't going to stop her from having fun on her first halloween!

To no one's surprise, I'm sure, Hope dressed up as a cute lady bug for Halloween. She had fun getting all dressed up and posing for the pictures. She decided the costume was so comfy that she fell asleep in the middle of all the fun!

After the mini photo shoot Hope changed into her second Halloween outfit - a cute outfit from her Aunt Em.

Hope Update - The rest of the week

2009-10-31T18:08:00.000-05:00

We've been much better this week about taking pictures of Hope.... we haven't been better about getting them posted with updates. So here's a couple of days worth...

With all of Hope's equipment it's hard for her to venture very far. She did, however, manage to make it to the living room sofa to hang out with mom and dad for a couple of hours this week.

Since red is Hope's favorite color, she thought it was pretty neat to sit on a giant soft red thing instead of being in her room. She even got to sit on her own like a big girl!

A few weeks ago Hope took a stroll through the apple orchards. The apples weren't quite ready to pick yet. This week, daddy went out and picked some apples for him and mommy and he found one just perfect for Hope. Hope doesn't have any teeth yet so all she could do was play with the apple but maybe next year she can eat her very own apple.

Hope still gets weekly visits from OT & PT. Her physical therapist brought Hope a "peanut ball". This is an exercise ball that is shaped kind of like a peanut. For the most part, Hope doesn't like playing or "working" on her tummy. If she's on her tummy she thinks that's a good time to sleep. The peanut ball lets Hope work on some upper body strengthening and get some "tummy time" in without having to be all the way on her tummy. Hope likes this much better.... although it's kind of hard to tell from the look on her face.

Hope hasn't had any big appointments in the past few weeks. This Friday (November 6th), though she meets with the doctor that will do her cochlear implants. This is just a consultation but we are all eager to hear what the doctor has to say (and we are praying hard, as usual, for encouraging news).

Hope's Baptism

2009-10-22T19:03:00.005-05:00

This past Sunday was Hope's baptism. As you can see from the photos she was adorable in her dress. Hope didn't mind all of the excitement at all, in fact she slept through the ENTIRE thing. Even still, she was very happy to get a chance to meet so many of the people that have been praying for her through the last 10 months!

Hope's Latest News

2009-10-20T19:50:00.003-05:00

This picture shows just how big Hope is getting!!

Hope went in last week to have her hearing aids adjusted. The audiologist turned them up and tested Hope out in the sound booth. It was an unofficial test but it appeared that Hope did not show much response to adjustment. It seems as though she might be able to hear somethings in the low, bass range but the volume levels had to be so high (equal to that of a chainsaw or rock concert) that it would cause further damage for her to be hearing at this volume. She will continue to wear them, continuing on her 6 month trial in order to pursue the cochlear implants.

The physical therapist has been to the house to work with Hope. This last time she brought a "peanut" ball. This is basically an exercise ball that is shaped like a peanut. She propped Hope up against it on her tummy in order to work on head control. Normally Hope doesn't really like tummy time (unless she's sleeping on her tummy) but she seemed to like the peanut ball and she did really well pushing up with her arms and lifting her head.

Happy Birthday Hope!

2009-10-08T21:55:00.003-05:00

It's hard to believe, but Hope is 10 months old now!! Happy Birthday Hope!!!

Hope got to spend her 10 month birthday with a trip to the pulmonologist. Everything went well and since Hope was in such a good mood, she decided to venture over to the hospital and visit with some of the nurses that took care of her when she was in the NICU.

Today Hope was visited by the vision consultant for Early On. She had some very encouraging news - it seems that Hope IS able to see, at least to some degree. Hope seems to really like looking at shiny, red things and prefers to look at things that are off to her right side. The vision consultant will continue to work with Hope (as will we) in hopes of getting her to be able to see equally in both directions.

Update

2009-10-02T21:31:00.002-05:00

Hope had quite a day yesterday...

It started out bright and early with an appointment with the neurologist. Since Hope has not had any seizures they've decided to let her "outgrow" her phenobarbital.

After that appointment, Hope had some blood drawn (she has an appointment with the pulmonologist next week and they wanted some bloodwork done prior to the appointment). After the blood draw, Hope headed home and was getting tucked back in for an afternoon nap when the phone rang.... it was the pulmonologist. She had gotten the results of the blood work and it seemed as though Hope's white blood count was elevated and she wanted to have Hope checked out. So we packed her back up into the car and headed to Grand Rapids. Hope got to hang out the in the emergency room at De Vos for 4 hour while the doctors ran more blood tests, urine tests and x-rays. They weren't able to find the source of the elevated white blood cells. They took a urine culture and blood cultures which may grow something in the next few days but nothing was outwardly apparent last night. Finally they let Hope go home for the night.

She is not acting sick so we are hopeful that it was just a "fluke" and that she isn't brewing an infection.

Update on Hope

2009-09-29T21:07:00.000-05:00

Hope has had a few appointments in the last week....

The physical therapist is happy with how well Hope is doing withher head control. It's something she will continue to work with Hope on. She can hold her head up very well now, she loves to sit up and look around.

The urologist saw Hope and doesn't need to see her again for a year. He is hopeful that Hope will outgrow the kidney reflux but if she doesn't there are a couple of options for treatment, including an outpatient injection of medication or if necessary a small surgery.

The surgeon who put Hope's feeding tube in took a look at it yesterday. He thought it looked good. She has a little bit of tissue that has built up where the incision is (completely normal) so he treated it with silver nitrate. Hope had this done three times while she was int he NICU so it wasn't new to her.

Hope has been racing along on the weight track.... you'll never guess what her weight is now...... 17 lbs 11 ounces!!!!!! She has grown a little bit length-wise and is now at 23 inches.

Daily Dose: Tuesday, September 22

2009-09-22T21:53:00.003-05:00

Hope has been doing well!! She had a very busy day today with lots of appointments but everyone survived the busy day.

Hope saw her ear nose and throat doctor, he was happy with how everything was going and said she doesn't need to come back for 4 months!

Hope also saw her nephrologist (kidney doctor). Last time Hope's bloodwork wasn't quite what they wanted to see. It turns out that her baseline indicates some sort of chronic kidney disease. She is going to have more blood drawn in a week or two to see if things have improved now that Hope has made it through her antibiotic course for the last UTI she had.

And the big news for the day..... Hope got her hearing aids today. They will be started out on the lowest setting, then depending on how she responds they will be "cranked up" every 2-3 weeks. Hopefully in the next few days we can get a pic of Hope with those hearing aids.

Until next time....

Daily Dose: Tuesday, September 15

2009-09-15T20:19:00.003-05:00

Hope sucking on her knuckle

Hope looking mighty cute in her "London" onesie

Hope & her mommy

Hope & Aunt Em

Hope laying low

The good news: no news is good news. Which is why we haven't updated lately. But we thought we'd give you a little update on what Hope's been doing lately.

Last week Hope had a busy week after she came home from the hospital. She had many adventures. She went to her first appointment with her pulmonologist. They were a little concerned because she appears to be very "healthy" in her weight. Her diet was adjusted so hopefully her increase in protein will help her grow longer and leaner.

Hope also had an appointment with her hearing doctor. Hope was a very good girl and sat very still in Daddy's arms while doctors took impressions of her ears to make the molds that her hearing aids will be built out of. Her hearing aids should be coming in the next few weeks and we'll be very excited to see what kind of an effect they have on Hope's ability to hear.

Hope also took her first walk around the orchard. Daddy put Hope in her baby bjorn on his chest, Mommy pushed Hope's kid-kart, and Grandpa R hauled all the bags full of "very important" things while Hope walked the long way, around the orchards, to Great-grandma's house for lunch. Hope loved doing all these things and is glad the weather has stayed nice and warm for her.

Daily Dose: Monday, September 7

2009-09-07T23:43:00.000-05:00

Hope is back at home. She is happy to be feeling much better and even happier to be back in her very own bed. Yesterday she took a nice soak in the tub to get rid of that weird hospital smell. She got dressed and took a nap so she was prepared for a big adventure.

After the nap, Hope finally ventured out onto the screen porch. Hope wasn't quite sure at first but then she settled right in. The day was beautiful and relaxing so she decided that another nap was in order.

Hope isn't quite used to her home routine again. Last night she spent some time being restless and trying to get comfortable. Hopefully tonight is a better night. Tomorrow will start Hope's regular visits to her specialists, starting with her first follow up appointment with the pulmonologist.

In other news.......

HAPPY 9 MONTH BIRTHDAY HOPE!!!!

Daily Dose: Friday, September 4

2009-09-04T23:51:00.000-05:00

Hope is still on track to go home on Saturday, YAAAYY!!! Hope is getting one more dose of IV antibiotics at midnight and then she will switch to the home version. Hope felt much better today so she got out of bed and spent part of the day in her kid-kart looking out the window. She noticed that she has a MUCH better view from this new room then she did from her old room.

Daily Dose: Wednesday, September 2

2009-09-02T23:08:00.002-05:00

Hope had a better day today. She has broken her fever!! This is great news. Also, the infectious disease decided that there was no reason for Hope to be in contact isolation (interesting that we have thought this all along) so the gowns and the gloves have gone away... FOREVER!!! Since Hope's fever broke and it appears her infection has been sensitive to most antibiotics, she will need to be on IV meds for 48 hours, but then she can come back HOME!!!!

Hope did have some bad news today though: Hope had a urine dye study. It showed that her urine refluxes into her kidneys, and that isn't supposed to happen. This is mild to moderate on one side and moderate to severe on the other. Hope will be on a low dose of antibiotics at all times as a preemptive measure against recurrent UTIs. If Hope has too many UTIs it could begin to seriously affect her kidney function, which we don't want. If Hope has a few more UTIs she will likely need to have some surgery to correct the problem.

We are soooo thankful that Hope is feeling better, and Hope is very thankful that everyone has temporarily stopped poking and prodding her. We keep praying that Hope continues to get stronger and healthier so she can go home by the end of the week. Yes, you heard correctly, end of the week, THIS week!!!!

Daily Dose: Tuesday, September 1

2009-09-01T18:49:00.002-05:00

Hope is at the hospital for a little while.

Hope's urine cultures came back positive for some infection, so Hope has an UTI. The doctors are waiting on her blood cultures to see if they come back positive as that would indicate sepsis. Hope will be at the hospital for the duration of her antibiotic regimen, which is at least 7 days after a clear culture but could be as many as 21 days after AND THEN a few more days until she gets a clear culture.

They have also discovered that Hope has an elevated creatnin level, which will be followed up on in case there is any scarring or kidney problems, but this isn't of big concern today.

Tomorrow Hope has a very full day with lots of tests and lots of therapy. Hopefully everything turns out alright, but in the mean time, Hope and her Mommy & Daddy are back at the hospital. Now we really are wishing Hope was at home because things were soooo nice when she was. But she'll get there again eventually.

Daily Dose: Monday, August 31

2009-08-31T23:50:00.002-05:00

Hope had a very interesting day today. She was running a pretty high grade fever so her doctors thought it would be best if she took a car ride to the emergency room. At the hospital they decided that Hope most likely has an infection of some sort. They ran a bunch of cultures which they are waiting on to come back with growth tomorrow. They are keeping Hope overnight to night to monitor her and make sure she is ok. We'll update when we know more.

Please say an extra prayer for Hope, and her Mommy & Daddy since they are spending the night at the hospital tonight.

Daily Dose: Friday, August 28

2009-08-28T22:51:00.000-05:00

Not a whole lot of new things for Hope today. She had a good day. She took a nap in her bouncy chair by the window, sat in her kid kart, played on the floor and spent lots of time snuggling with mommy & daddy.

Hope wants the rainy cold weather to get better so she can venture outside again!!

Daily Dose: Thursday, August 27

2009-08-27T22:40:00.006-05:00

Hope and Great-Grandma

Hope, Mommy & Daddy

Hope looking great outside!!

Hope & Aunt Em

Hope blowing bubbles

Today was a great day!!!!! Hope's whole Robinson family was together. It was Aunt Em's birthday so she drove up from Chicago to spend the day with Hope (and everyone else, but mainly Hope). Hope started her day by getting her bath and getting dressed up in a pretty little outfit. Then Hope got to go for ANOTHER car ride!!! Mommy & Daddy packed Hope, and her entourage of stuff, up and took a ride up the street to Great-Grandma's house. The whole Robinson family met there for some family pictures. It was a nice, but little chilly, day out. That didn't phase Hope, she loved all of it!!!

After the family pictures, Hope, and her entourage of stuff, went home. After some good snuggling time with Aunt Em on the couch, everyone sat around the dinner table for a family dinner. In fact this was Hope's FIRST family dinner with the whole Robinson family. Hope sat next to the table in her kid kart and took it all in. At some point she eventually got so bored that she started blowing bubbles, which we found very humorous.

Hope had a great day, and the entire family had a great day as well. It was so nice to have the family together, and for Hope to be at home. Things have been going so well for Hope. She seems to be relaxed a lot more during the day, but also more alert. We look forward to many more great days ahead!!!

Daily Dose: Tuesday, August 25

2009-08-25T23:51:00.002-05:00

Hope on the way out of the hospital!

Hope on her first outdoor ride!!

Hope is all buckled in and ready to go home!!!!

HOPE IS HOME!!!! Finally!!!

Hope was so excited to see the sunlight today and feel the breeze on her face for the first time. She is loving her new surroundings. She has settled into her new crib and was sleeping peacefully this evening, glad to finally be at home.

Hope, Mommy & Daddy are still working on getting into a routine and schedule, but hopefully over the next few days everything will work out. Tomorrow Hope has big plans to venture to the screened in porch for a little while!!!

Daily Dose: Monday, August 24

2009-08-24T22:44:00.001-05:00

Hope is getting ready to go home!!!

Tomorrow is the big day!!! Everyone is ready and excited!

Hope had her ears checked today. They took her down to the OR around 9 am. A small incision was made in her ear drum and the ENT was able to drain a small amount of fluid off, nothing impressive. He noted that her ear canals are small and that the inner portions of her right ear appeared slightly abnormal. Upon finishing this portion, they repeated the BAER/hearing test. They performed the test two ways; by air conduction and by bone conduction. Hope did not exhibit a response to either mode. This leads the doctors to believe that Hope is deaf. This is difficult news to hear but not altogether surprising as she has not passed prior hearing screens. The good news is that the doctors think Hope might be a good candidate for cochlear implants. They performed a CT scan of her temporal bones this afternoon to see if there would be any obvious physical hindrance to the implants. We have not gotten the results back yet from this scan. In order for the doctors to consider the implant, Hope has to complete a 6-month trial with hearing aids. This is for several reasons; occasionally the hearing aids improve hearing more than they thought, plus, the implant would not likely be done until Hope is at least 1 year old. We will be contacting the hearing aid doctors tomorrow to get the ball rolling for this. We ask that everyone continues to pray for a positive solution for Hope's development.

This has been a trying journey at times, and today's news wasn't easy to learn, however, we are so blessed and so thankful that tomorrow we will have our beautiful Hope home with us. This joy is not to be diminished in light of today's news. We should all celebrate the amazing strength Hope has shown over the months. Tomorrow will be a joyous day!!

Special prayers

2009-08-24T08:44:00.001-05:00

Keep Hope in your prayers this morning as she is currently undergoing the procedure to check her hearing. We will keep you posted.

Daily Dose: Saturday, August 22

2009-08-22T21:11:00.000-05:00

Hope has had a quiet and restful few days as she gears up for the big move. She has broken the 15 pound mark and is having no problem gaining weight, but the nutritionist wants to make some changes to get Hope more protein so her food is now fortified even further.

The countdown continues:
3 more days!!!!!!!

Daily Dose: Thursday, August 20

2009-08-20T23:45:00.002-05:00

So much has happened the past few days but no updates. This was partially because Hope's Mommy & Daddy were very busy and couldn't send Aunt Em any pictures. Last night they all had a sleep-over, aka "rooming-in", at the hospital. This was where Hope and her Mommy & Daddy were in a room all by themselves all night. This went very well for everyone so one more thing completed on the way to bringing Hope home.

Hope is scheduled to have her ears and hearing checked again on Monday morning at 9am. We are praying extra hard that there is fluid behind her ear drum that is contributing to the hearing loss and that it will be an easy solution to help her. Please keep Hope in your prayers this weekend.

Hope is checking even more things off her "Going Home" checklist. Today she had the carseat challenge. This is where the contest sits in her carseat for two hours. Hope was an amazing contestant, coming in first place sitting for a record setting 3 hours with no trouble at all. GO HOPE!!!

Hope is also continuing to gain weight. She is now weighing 14 pounds and 14 ounces!!

So for the big news.......

5 days until Hope comes home!!!!

Daily Dose: Monday, August 17

2009-08-17T22:41:00.002-05:00

Hope had a good weekend and a good start to this week. Her ENT (ear nose and throat) doctor took a look at her ears today and didn't see anything obviously wrong. Before Hope goes home the ENT plans to put her under sedation and check to see if there is any fluid behind her ear drums. If there is a significant amount of fluid then likely Hope will get tubes in her ears. During this process, while she is sedated, they will run another diagnostic hearing test.

The countdown continues...... only 8 DAYS until Hope comes home!!!!

As you can see from the pictures above, Hope's room is finally all ready for her. It is pink (because apparently that's what little girls like) and has lots of ladybugs. Hope is very excited to come home and play with her ladybugs and her new toys and everything else!!!

Daily Dose: Saturday, August 15

2009-08-15T20:14:00.000-05:00

*Apologies for the lack of picture. Hope's Mommy & Daddy are out of town, leaving Grandpa & Grandma R on Hope duty but they aren't that proficient with the camera. Pics to resume Monday.

As we mentioned, Grandma & Grandpa R were left in charge of Hope yesterday. Grandpa R reported that Hope had a very good day. She spent a lot of the morning in her KidKart, she still likes being able to sit up and see the rest of the world. Grandpa R got to hold Hope for a very long time, all of which Hope was very peaceful and slept. She continues to be incredibly cute! Before Hope took her nap, Grandma & Grandpa R read a couple of books and sang some songs to Hope, she seems to like that.

The countdown is still on....... only .............................
10 days until Hope goes home!!!!

Daily Dose: Thursday, August 13

2009-08-13T22:00:00.001-05:00

12 DAYS TO GO..... until Hope comes home!!!

Hope had a diagnostic hearing test done today. This was a follow up from the previous hearing tests she had been given and did not pass. The test today was more accurate than the other ones so these results are more serious. The technician was able to get a response from one ear, meaning she has at least some hearing in that ear. But, they weren't able to get a response out of the other ear. This could be caused by several things. Hope could have some congestion that would interfere with the results, the test could have been skewed because Hope was moving around, or it might likely be that Hope has some hearing loss. Hope will have an ear, nose and throat (ENT) doctor take a look to see if there is any congestion, then the test will be repeated. The conclusion from this test: Hope has severe hearing loss. While we are very positive, we are not expecting the repeat test to give us completely contradictory results but we are praying for at least a slight improvement and also that the loss that is present can be managed by hearing aids, implants, etc.

Hope is still growing and is now up to 14 pounds 5 ounces!!!!

Daily Dose: Wednesday, August 12

2009-08-12T21:50:00.000-05:00

Hope has been doing GREAT!!! She spent a good part of yesterday up in her kid-kart, checking out the new views.

Hope's G-tube site has been building up some extra tissue that is part of the healing process. It had gotten to the point that there was so much tissue it was actually pushing the tube away from her stomach. To fix this, the surgeons treated the tissue with silver nitrate which kills off the excess tissue.

Hope is now over 14 pounds!!!!!! 14 pounds and 3 ounces!

2009-08-11T09:00:00.002-05:00

Today was a very important day for Hope. Today was the day of Hope's vent discharge meeting. Hope's pulmonologist, pulmonology social worker, neonatologist, home nursing coordinator, 2 representative from Hope's medical supply company, the neonatal discharge coordinator, and the pediatrics discharge coordinator all sat down and created a plan to get Hope home. It appears that as long as Hope remains stable, she will be released from the hospital on August 25. This is a few days later than everyone had hoped, but the hospital only discharges children from the NICU on Thuesdays, Wednesdays, and Thursdays.

So the new countdown begins, and is now even MORE official:

T MINUS 14

and counting.

Daily Dose, August 9, 2009

2009-08-09T21:42:00.007-05:00

Hope has had another couple of great days. We are still on track with the two week countdown...

11 Days

Hope has spent some time checking out her new kid-kart. It has allowed her to sit up and check out the view out the window next to her bed. She is getting very excited to venture outside later this month!

After deciding that Hope was a little on the "short" side the nutritionist had decided to reintroduce Bene-protein to her diet. Hope didn't like this any better this time than she did the first time we tried this a couple of months ago. After a few days of not digesting well they have taken it back out of her food and she is digesting much better again.

Happy Birthday Hope

2009-08-07T21:52:00.003-05:00

Hope sleeping on her tummy

HAPPY BIRTHDAY HOPE!!!

Today is Hope's 8 month birthday. She spent the day chillin' on her new home ventilator. The day went well and we now have one more day down on the 2 week count down.

Hope got her Kid-Kart today. This is a special order, custom cart for Hope that will allow her to travel with all of her equipment. This will make it much easier for daddy and mommy to get her to her doctor's appointments and such but will also allow her to venture out into the yard to get some fresh air.

Daddy and Mommy finished up their CPR training today. One more thing checked off the list of things that have to be completed before Hope comes home!!

2009-08-06T22:40:00.004-05:00

Hope's new good buddy: her home vent!

Hope had a very exciting day today - she left behind her old ventilator and was connected to her new home vent!! This means that if she remains stable for the next two weeks, she will be ready to...

drumroll please...

COME HOME!!!

Really. Honestly: no broken crystal balls, hard to see where this goes, roller coasters, tunnels with distant lights, or honest disagreements between good people. Home.

It is possible, however, that she might not remain as stable as she is today for various reasons. Should such an event occur, it would reset the two week clock. So, to make this easier for everyone, we will update you all on the time remaining for the home vent trial. As such, we now have:

13 days

Please pray for Hope's continued stability, development, and comfort as she proceeds through this incredibly long testing period. Please also hope that mommy and daddy do not pull their hair out or bite off all of their fingernails in the process, and that they can find the time to put Hope's bed together...

2009-08-05T21:47:00.002-05:00

Thursday is the big day! They are putting Hope onto the home ventilator around 8 am Thursday morning. Hope needs to be on the home ventilator for 2 weeks before she'll be allowed to go home. We are all praying very hard that the two weeks go very well and that she will be cleared to go home.

After reviewing the growth charts with Hope's nutritionist it looks like Hope is at exactly the right weight. She's a tad shorter that she should be at this point so they are going to add some extra protein to her feedings in hopes of getting her to grow a little bit longer.

Daily Dose: Monday, August 3

2009-08-03T21:56:00.000-05:00

Hope had a phenomenal day yesterday!! Since she has been have more good, strong, healthy days Mommy & Daddy were anticipating talking to the doctors yesterday morning about what the next steps might be. The doctors were so happy about how Hope's weekend had gone that they didn't wait to discuss the next steps... THEY ORDERED HER HOME VENTILATOR!!!!

This might not sound that exciting, but the home ventilator doesn't get ordered until they are pretty sure Hope is on a good track to going home. Hope will have to be on the home ventilator for two weeks with minimal changes to her settings in order to be cleared to go home. Everyone is very excited!!

Hope also had a very exciting day because she got to meet her Uncle Corey. Uncle Corey came from North Carolina to visit Hope and they both were very happy to meet each other.

Daily Dose: Sunday, August 2

2009-08-02T20:33:00.000-05:00

Hope has had two of the best days in a very long time!! She has had fewer and fewer events over the past several days. Yesterday she only had 12 and today even fewer, and most of them are minor too, like when she needs suctioning, is stretching and things like that.

We pray lots more days like these!!

Daily Hope: Friday, July 31

2009-07-31T21:39:00.000-05:00

Hope gets tired from all the excitement

Hope: day 237

Hope had a great day. She spent sometime playing in the afternoon with Mommy, Daddy, Aunt Em & a new friend, Kay. They all sang some songs and played.

We are trying to keeping her baseline oxygen at 26% instead of 21%. It seems that this has helped but hasn't completely solved her episodes all together. Pulmonology seems happy with the improvement though. When Hope got a lung culture last week, the culture grew pseudomonas. Hope now is taking an inhaled antibiotic to help get rid of this.

Daily Dose: Tuesday, July 28

2009-07-28T22:35:00.001-05:00

Hope has new ventilator settings and a longer trach, but they don't seem to have been the miracle cure as she still had several episodes today.

Hope is now also having a nutritionist in her life. Her current feedings are going to be evaluated because she seems to be getting hungry before her feeding times so they might need to increase the amount she is getting each time. Also... Hope has gained a bit of weight, possibly even though we want her to gain weight she is a little heavy now for her length and is getting, well...... chubby (however chubby babies are cute). The might need to reduce the amount of the supplement they are giving her but her weight is now over 13 pounds!!!

Daily Dose: Monday, July 27

2009-07-27T22:30:00.000-05:00

Hope did well with her bronchioscope today. She was in the operating room for about 30 minutes and the doctors said she did fine with the anesthesia. The doctors were able to see that Hope has moderate airway collapse in her trachea and both lungs, and moderately severe collapse in her lower right lope. This is not brand new information. We already new all of this so basically it means we haven't missed anything big. Apparently there is no quick easy fix to these things, we just have to wait for Hope's airways to firm up. The good news: this WILL happen eventually.

The doctors noted she has some swelling and irritation in her airway so they cancelled her oral feedings. Hopefully in the next few weeks this will help eliminate her episodes.

Grandma & Grandpa R stayed all afternoon with Hope and they had some great time chillin' in the crib.

Daily Dose: Sunday, July 26

2009-07-27T00:21:00.002-05:00

Hope is quickly gaining weight!! She is nearly 13 pounds now!!! Her bronchioscope is scheduled for very early tomorrow morning. Since she will be put under general anesthesia for it she can't eat tonight after midnight. But don't worry, she'll be getting iv fluids and versed so she will be very happy. In fact, she won't remember anything. The versed makes it so that you don't remember anything that happens. So she won't remember being hungry nor will she be annoyed with having a camera in her lungs. Thank goodness!!!

Don't forget to say a prayer that everything goes well in the morning and we find some answers!!

Daily Dose: Friday, July 24

2009-07-27T00:13:00.001-05:00

Hope & Aunt Kim

Hope with Great-Grandpa Holtz

Four Generations!!!

Hope had a better day today. Less episodes. She also had a busy day that included: snuggling with Grandma & Grandpa Holtz, snuggling with Aunt Kim, taking a bath in the bathtub, and feeding from a bottle. Quite a busy day yet she STILL managed to find time to sleep through much of the excitement!

Daily Dose: Thursday, July 23

2009-07-23T23:14:00.000-05:00

**disclaimer: Hope's Mommy & Daddy moved into their new house but do not have an internet connection yet, so Aunt Em is not being supplied with daily pictures

Hope's bronchioscope is schedule for bright and early Monday morning. She will be put under general anesthesia so they can get a good look at her airway. She still is having a lot of episodes. The ventilator changes and medicine changes don't seem to be doing much good. We are all praying the bronchioscope will give some insight.

Besides preparing for her big tests, Hope has had a very VERY busy few days with lots of family visiting. On Wednesday, Hope got to cuddle with her Great-grandpa Holtz and Great Uncle Phillip. She also got to meet Aunt Kim and Great Aunt Alice for the first time!! Then she got to spend time with Grandma & Grandpa Holtz. Today she got good snuggling time in with Mommy, Grandma Holtz, Grandpa Holtz, Aunt Kim and Daddy!! A normal baby would be all snuggled out but Hope is looking forward to more tomorrow!!

Daily Dose: Tuesday, July 21

2009-07-22T11:27:00.002-05:00

Hope hasn't spent as much time with Mommy & Daddy the past few days. Hope's great-grandma Holtz turned 82 on Monday so Mommy & Daddy went to Toledo to celebrate with her. Today, they got to spend a few hours with Hope at least.

Since Mommy & Daddy were gone, Grandma R spent the past two days with Hope reading, playing and singing. They both had a very very good time.

The bronchioscope and FEES study are tentatively scheduled for this Friday afternoon. Until then they have increased her ventilator settings and she seems to be doing well with these changes. Her episodes have decreased somewhat so we are all hopeful that this trend will continue.

Daily Dose: Sunday, July 19

2009-07-19T21:02:00.000-05:00

Hope had a good day today. She still had a handful of episodes, but not as many as yesterday. She enjoyed the day, spending lots of awake time playing with Mommy & Daddy. Hope's ventilator settings were increased slightly yesterday and her inhalers were also increased and changed. She is tolerating these changes well so far, and hopefully they will be helpful. Tomorrow we are hoping to hear more on getting the bronchoscope scheduled.

Hope is getting very big. She is now 22 inches long!!!! That's 10 full inches longer than when she was born, almost twice as long!!! Grow Hope Grow!!!!

Daily Dose: Friday, July 17

2009-07-17T22:14:00.000-05:00

Hope's Mommy & Daddy met with the pulmonologist today who got filled in on the scoop regarding Hope's episodes, need for more oxygen and coughing. The pulmonologist said that sedation CAN have the effect of relaxing Hope to the point of not having as many episodes, which would explain why she was better right after surgery. The pulmonologist has recommended several things.

Hope is going to have another chest x-ray because the last one was taken as she was exhaling and didn't show good expansion.

They are going to take a culture from Hope's trach to see if there is any infection that might have been missed.

Hope will have a bronchioscope, like she had at Riley before her trach, which will hopefully show if she has any irritation, inflamation or abnormal growths in her airway.

Hope will have increased ventilator settings slightly to see if the additional support will help her.

We are all hoping that one of these things will point us in the right direction so that we can continue to get Hope ready to come home!!

Hope gained more weight last night and now weighs 11 pounds 8 ounces!

Daily Dose: Thursday, July 16

2009-07-16T22:34:00.000-05:00

Hope & Mommy on Mommy's Birthday!

Sorry for a miss yesterday. Yesterday was Hope's Mommy's birthday, so they were busy celebrating, but also busy getting ready for a big move (more on that later).

Not much is new with Hope. She has started gaining weight again, YAY, and is now up to 11 pounds 5 ounces!!! Mommy & Daddy are meeting with the pulmonologist tomorrow and hopefully there will be insight on how to prevent all the episodes and get Hope ready to come home!!

Mommy & Daddy didn't get to see Hope today because they were busy with the big move. Their house in Grant is already for their furniture so they were at their old house in Elkhart supervising the move. They are definitely excited to see Hope again tomorrow!

Daily Dose: Tuesday, July 14

2009-07-14T22:41:00.000-05:00

Today was not a good or bad day for Hope, just a day. She was restless last night until about 1am when she finally fell asleep and then slept soundly through the rest of the night.

Today she still had a large number of desat episodes. We are all hoping and praying that we can find a solution to this because she probably won't be able to come home to her new house until the episodes are resolved.

Hope got to snuggle with both Mommy & Daddy a bit today and fell asleep before they left for the night.

Daily Dose: Monday, July 13

2009-07-13T22:40:00.002-05:00

Hope had a pretty good morning and afternoon today. She took 15 mls from a bottle today and did very well with it. As the day wore on, Hope seemed to be coughing more than usual and seemed pretty unhappy. Her heart rate was elevated to close to 200 and she was restless. Mommy & Daddy suctioned her trach (without getting much out), took her temp, fed her.... all without much success at cheering her up.

Since this was a little out the of ordinary for Hope, because she is quite the happy baby, Mommy & Daddy asked the doctor to come by and just take a look at her. He didn't see anything alarming, but just to be safe ordered some blood tests. After dinner while, waiting for the results, Hope had fallen asleep and was much calmer. The blood work so far has all come back normal.... so far it looks like Hope was just tired and maybe a little cranky :)

Daily Dose: Sunday, July 12

2009-07-12T23:05:00.002-05:00

Hope had a better day today. She was awake for quite a while, and, as you can see, got to have play time with Aunt Em!!

Hope took a bottle today and that went really well. She is quite the little cutey and loves to play games where her arms move around and stretch.

Hope sends a big HAPPY BIRTHDAY to Great-Grandma Anderson who turned 94 today! Hope is very excited for next year when she can be at home with Great-Grandma to celebrate.

Daily Dose: Friday, July 10

2009-07-10T21:46:00.000-05:00

Hope had a good day today. The number of her desats is dropping - the nurse today had a different template on the monitor so Mommy & Daddy did not get an accurate count.

Hope was really agitated for a couple of hours last night so the doctors decided to increase the frequency of her valium. Hopefully this goes well.

Mommy & Daddy finallyhad a family conference with the doctors, social worker and the discharge coordinator. Now, it seems like a plan is forming as to how to proceed from here to home. Still at least a month away...

Hope is doing well with her feedings too, but hasn't been gaining weight this past week. Mommy & Daddy were able to get the doctors to resume the nutritional fortification and we will see how that works.

Daily Dose: Thursday, July 9

2009-07-09T22:52:00.000-05:00

Hope had a GREAT day today. She had many fewer events, still more than a few days ago but she is doing much better than yesterday. She was awake and played with Mommy & Daddy for about 6 full hours today! Hope also played with her physical therapist again today as well. He said Hope is doing much better since her surgery. She is able to be much more calm, alert and engaged in playing, just like little girls should be.

Tomorrow Mommy & Daddy are going to talk to the doctors about getting Hope ready to try to take the bottle again. Hopefully they will say she can because Hope is VERY excited about that idea.

Daily Dose: Wednesday, July 8

2009-07-08T23:09:00.001-05:00

Hope had a rough night last night and her morning was a bit rough as well. Yesterday, the doctors weaned Hope's ventilator settings down quite a bit even though Hope had an increased number of desats. The wean apparently went too far for Hope's pleasure because she had 50 events between 8pm last night when Mommy & Daddy left and 10am today when her ventilatory support was raised- 50 events is the amount that the computer can store. After her settings were raised, Hope did much better, but still had a few events because her respiratory reserves weren't quite caught up.

Hope was much more pleasant and far less agitated today. She had a very very large #2 (poop) last night that made her much more comfortable.

As you can see from the picture, Hope is still getting the "glove" treatment, and no one is very happy about it.

Daily Dose: Tuesday, July 7

2009-07-07T23:29:00.000-05:00

Happy 7th Month Birthday Hope!!!!

Other than the usual birthday celebration, Hope had an okay day. She was a bit restless and agitated most of the day, which ended up being caused by some constipation since she hadn't pooped all day long!!! I personally can't blame her for being uncomfortable. The doctors are still very happy with her blood gasses and how they are progressing so they weaned down her ventilator support a little bit more today. We pray she will continue to do well with this weaning practice.

Daily Dose: Monday, July 6

2009-07-06T23:18:00.000-05:00

Hope had another great day today. She has been weaned down on her ventilator settings again and seems to be tolerating it well so far.

Hope only got one dose of tylenol last night and one dose today but seems to be feeling better. She doesn't appear to be in much pain anymore which is GREAT!!!

Daily Dose: Sunday, July 5

2009-07-05T21:14:00.000-05:00

Today was a good day for Hope. She continues to do marvelously after her surgery. She has gone from having roughly 40-50 alarms- a portion of which are true "events", a fewer portion are "significant events" and even few cause any big concern or uproar- to having................ (insert drumroll here)................................... 5 events!!!!! This is great progress! There is a possibility that these have been reduced due to the sedation Hope was on following her surgery since this also happened after Hope's tracheostomy, but as she continued to recover from that surgery they gradually increased. We hope that these have honestly improved, not just because of her sedation, and we will update this number every day from now on.

Hope was very excited to be able to wear clothes again. As you can see, she is wearing a floral number from the Hope Collection.

Daily Dose: Saturday, July 4th

2009-07-04T23:08:00.001-05:00

Happy 4th of July Everyone!!!!

Hope had a great day today- she is recovering very well from her surgery. She should be back to full feeds by midnight, which means her IV can be taken out!! Hope has had a few excellent blood gasses so the doctors will likely continue to wean on her support tonight.

Hope is also weaning off her morphine so she is now getting Tylenol for her pain. This means that Hope was more awake and interactive today. While she is interactive, she is still a little moody, she is most likely thinking: "This may not hurt right now, but I'm still PISSED."

As you can see, Hope was very patriotic today. Her new patriotic bow is courtesy of Nurse Emily, one of Hope's favorites. It looked very cute but as you can see from the first picture, it also was very tasty.

We are all hoping tomorrow goes as well as today.

Daily Dose: Friday, July 3

2009-07-03T23:42:00.000-05:00

Hope has been quite the trooper after her surgery. Unfortunately she is in pain, but the nurses are trying to minimize that, so Hope spent the last 24 hours in a morphine induced sleep.

The doctors think that Hope is progressing well. She has resumed her feeds already and is doing well with them. If anything, she seems to be ahead of the curve with her recovery. Hopefully she will work up to full feeds by tomorrow or Sunday night.

You can see in the picture Hope's little surgery scars. The horizontal one on the bottom is from her reconnection surgery. Then the vertical one in the middle is from the last surgery. Even with the scars and bandages she is still the cutest little girl I have ever seen.

Surgery Update

2009-07-03T08:41:00.003-05:00

Just wanted to give everyone a quick update... Hope's surgery went well yesterday. She tolerated the anesthesia and surgery well. They finished up around 8:00pm and Hope was settled back into her bed by 8:30. As of 10:30 last night the anesthesia had started to wear off and she was starting to act a bit uncomfortable. Her nurse gave her a dose of morphine and a dose of valium. Once she settled down, she slept well through the night. Her blood gasses are looking very good and she wasn't on any additional oxygen as of this morning.

Thank you to everyone for all the warm thoughts and prayers. We are all so relieved that she did so well.

Daily Dose: Thursday, July 1

2009-07-02T09:32:00.002-05:00

Hope is prepared and ready to go for surgery tomorrow. She is tentatively on the schedule for 2pm but if emergencies (other surgeries) come up she may get bumped later in the day or even to Friday morning. Hope spend all day getting ready for her surgery. She took a long soak in the tub. Hope won't be able to take a bath for 10 days (ewwwww) or so after the surgery, but once she is all healed up and her incision looks good she'll be back to splashing around just like the does now.

As of last night Hope was up to 10 pounds 13 ounces!!!! She is getting closer and closer to 11 pounds!

As you can see, Hope is still maintaining her fashion sense. She is modeling a new ensemble from the Hope Collection. *Note the matching socks.

Hope has had lots of visitors in the last week and wants to thank everyone that has come to visit her: Nancy Vardon, Judy Convertini, Caitlin Zinnecker, Joyce Carlson and Pastor Ruth. She loves seeing all of these people who care so much about her!!

Daily Dose: Tuesday, June 30

2009-06-30T23:35:00.000-05:00

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

2009-06-29T22:41:00.002-05:00

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.