Daily Dose: Tuesday, December 22

Hope & Great-Grandma

Hope looking cute in her cute slippers

Hope hanging out in the living room

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

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

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

Daily Dose: Wednesday, November 25

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: Tuesday, September 15

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: Thursday, August 20

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: Thursday, August 13

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

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!

Daily Dose: Tuesday, July 28

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: Sunday, July 26

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 17

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

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: Thursday, July 1

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: Saturday, June 27

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

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

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

Daily Dose: Thursday, June 25

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

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

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

Daily Dose: Saturday, June 20

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

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

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

Daily Dose, Saturday June 13

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

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

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

Daily Dose, Monday June 1

Hope Getting Her Back Patted

Peggy

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

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

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

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

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

Daily Dose, Sunday May 31

Today was a quiet restful day for Hope. She spent the day doing a little bit of all of her favorite things: cuddling with daddy, cuddling with mommy, lounging in her boppy, swinging in her swing, playing with her balloon and sitting up and watching all the people walk by.

Her blood gas this morning was good so her ventilator settings were lowered again today. She appears to be on a good trend and hopefully they will be able to continue to lower her support throughout the week.

Hope weighed a whopping 9 lbs 2 ounces today (4,150 grams). She is now 20 inches long. At the rate she is growing, she will be pushing 10 pounds before we know it!

Daily Dose, Saturday May 30

Hope spent most of the day today awake and alert. She spent a lot of time sitting in daddy and mommy's laps and looking all around checking things out. She is still very intrigued by her balloon friend and she played with him for a while today.

In order to rule out that Hope's episodes are caused by seizure activity the doctors have ordered another EEG for Tuesday. Hope had an EEG done back in April but it was only over a short duration (15 or 20 minutes) and since Hope slept sound through it the doctors did not see anything suspicious. This time she will likely have a longer EEG test run (up to 24 hours long) in order to catch a larger time period and hopefully see what happens when she has an event.

Hope's blood gas was good this morning but not stellar so they decided not to make any changes to the ventilator settings today. If her gas is good tomorrow they will consider weaning tomorrow.

As you probably all know from reading lately Hope has been growing by leaps and bounds. Today was a big day for her - she broke through the NINE POUND mark!! As if it were even possible for any of us to forget.... Hope was born at 1 pound 8 ounces. She is now over 6 times what her birth weight was!!!

Daily dose, Thursday May 28

Hope had another good day today. Hope's blood gas results this morning were very good, so the doctor weaned more on her respiratory support. This seems to be going well, and Hope is looking forward to more weaning in the next couple of days.

Tomorrow developmental pediatrics will come to consult on Hope's ability to swallow. If things look good, the doctors will probably order a couple of tests and then, if things still look good, the doctors will clear Hope for breastfeeding!

Hope had no significant events today. Mom and dad are hopeful that we may be almost done with these, as they seem to be gradually diminishing in frequency and severity.

Hope weighed 4,060 grams. This puts her over 4 kilos, which is 8 pounds 15 ounces!!

Daily Dose, Saturday May 23

Hope spent a good bit of the day sleeping and resting. Her bottom is still very sore so she lounged around diaper-less with the oxygen on the tush again. Hopefully since they stopped her antibiotics today things will clear up soon.

Once Hope did wake up, she was ready to play. She hung out with mommy, grandma R and granpda R for a while and then the real excitement started. Her nurse got her a swing to play in for a while. Hope wasn't sure what to make of this new vantage point at first. Her next mission was to figure out how and why she was moving without someone holding her...this was all very new and strange.

Hope weighed in at 3830 grams today - 8 pounds 7 ounces.