Hope's Latest News

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!

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

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

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

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, September 7

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

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: Tuesday, September 1

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.