Monday, August 31, 2009

Daily Dose: Monday, August 31

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.

Friday, August 28, 2009

Daily Dose: Friday, August 28

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!!

Thursday, August 27, 2009

Daily Dose: Thursday, August 27

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!!!

Tuesday, August 25, 2009

Daily Dose: Tuesday, August 25

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!!!

Monday, August 24, 2009

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!!

Special prayers

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

Saturday, August 22, 2009

Daily Dose: Saturday, August 22

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!!!!!!!

Thursday, August 20, 2009

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!!!!

Monday, August 17, 2009

Daily Dose: Monday, August 17

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!!!

Saturday, August 15, 2009

Daily Dose: Saturday, August 15

*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!!!!

Thursday, August 13, 2009

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!!!!

Wednesday, August 12, 2009

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!

Tuesday, August 11, 2009

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:


and counting.

Sunday, August 9, 2009

Daily Dose, August 9, 2009

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.

Friday, August 7, 2009

Happy Birthday Hope

Hope sleeping on her tummy


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!!

Thursday, August 6, 2009

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...


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...

Wednesday, August 5, 2009

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.

Monday, August 3, 2009

Daily Dose: Monday, August 3

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.

Sunday, August 2, 2009

Daily Dose: Sunday, August 2

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!!