One Year at Home

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!! :)

Daily Dose: Friday, September 4

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

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: 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!!!

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!!!

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: 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!!!

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: 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.

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: Tuesday, July 14

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: Tuesday, June 30

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

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

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

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

Daily Dose: Monday, June 29

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

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

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

Daily Dose: Thursday, June 18

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

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

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

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