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 22

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

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, August 24

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!!

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, May 6

Hope was feeling pretty good for most of the day and remained awake and alert for the entire day! Mommy, Daddy & Grandpa & Grandma R took an infant CPR class. The good news is they all passed with flying colors!!!!

Mommy & Daddy met with Hope's developmental pediatrician this afternoon. She was very pleased with the progress Hope has been making. Hope was able to focus on objects and track them with her eyes. Hope also sat up and did very well with her head control. Hope was showing off and even turned to look at the doctor when she spoke to her, which made the doctor pretty confident that Hope could hear her. Mommy & Daddy discussed that Hope had been referred for further hearing testing so the doctor dug a little deeper to find out details. Turns out the hearing test that Hope "failed" was just that she didn't respond to sounds at 35 decibels. The doctor was pretty sure that given all the ambient noise in the room, 35 decibels is very quiet and not surprising that Hope had trouble. Hopefully Hope will do well with her follow up test with the audiologist after she is released.

One thing that Hope needs to work on is getting the social smiling down. Hope was also showing a little tightness in some of her muscles but the doctor showed Mommy & Daddy some things to do to help Hope relax. After 5 minutes of doing those things, Hope was completely relaxed and content so Mommy & Daddy have to make sure they do those things every day to Hope help stay relaxed and loose.

The BIG news for today is that Hope weighed in at 7 pounds 1 ounce today!!! Yes, SEVEN pounds. That is HUMONGOUS compared to when she was born. Way to go Hope!!

Here is a little video of Hope looking around

Daily Dose: Wednesday, April 15

Hope had a very busy day today with lots to report on. Because her blood level is low she had multiple episodes. To eliminate the episodes the doctors have put her back on the vapotherm, at least until she can start making her own blood and get stronger. Her blood levels are quite low, but her labs seem to indicate she is trying hard to make her own blood. The doctors want to hold off on transfusing her (unless completely necessary because things get worse) because this is a struggle that Hope will have to face one way or another, and it might as well be while she in the care of the doctors and nurses at the hospital when she can have all the support she needs to get through it.

Hope had a hearing test today and neither ear passed. This does not necessarily mean there is a problem, or that it is a major problem. The test (which Aunt Em thinks is ridiculous) has no degree of pass or fail, you either do or you don't. What the test does mean is that Hope will need to be tested again by an audiologist when she comes home. Often kids who don't pass the hospital's hearing test do well with the audiologist, but Hope's doctor told us that, considering her brain ultrasound results, it is more likely that Hope will have some hearing difficulties.

Hearing difficulties do not necessarily mean profound deafness as there is a large range of impairment. If there is an impairment, it is not necessarily related to Hope's brain issues as hearin gimpairment is th emost common difficulty diagnosed at birth. Many times these issues can be mitigated with hearing aids or surgery.

So what does this tell us? This tells us that this is something we should be concerned about, follow up on, and prepare for possible early intervention. The good news for Hope's Mommy & Daddy is that they have a basic understanding of how you support a child with a hearing impairment. They are both fully capable of learning sign language if that becomes part of our reality. Given the broad spectrum of challenges Hope may face, this is one of the easier ones for Hope's family to support her through.