Daily Hope: Friday, July 31

Hope gets tired from all the excitement

Hope: day 237

Hope had a great day. She spent sometime playing in the afternoon with Mommy, Daddy, Aunt Em & a new friend, Kay. They all sang some songs and played.

We are trying to keeping her baseline oxygen at 26% instead of 21%. It seems that this has helped but hasn't completely solved her episodes all together. Pulmonology seems happy with the improvement though. When Hope got a lung culture last week, the culture grew pseudomonas. Hope now is taking an inhaled antibiotic to help get rid of this.

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: Monday, July 27

Hope did well with her bronchioscope today. She was in the operating room for about 30 minutes and the doctors said she did fine with the anesthesia. The doctors were able to see that Hope has moderate airway collapse in her trachea and both lungs, and moderately severe collapse in her lower right lope. This is not brand new information. We already new all of this so basically it means we haven't missed anything big. Apparently there is no quick easy fix to these things, we just have to wait for Hope's airways to firm up. The good news: this WILL happen eventually.

The doctors noted she has some swelling and irritation in her airway so they cancelled her oral feedings. Hopefully in the next few weeks this will help eliminate her episodes.

Grandma & Grandpa R stayed all afternoon with Hope and they had some great time chillin' in the crib.

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 24

Hope & Aunt Kim

Hope with Great-Grandpa Holtz

Four Generations!!!

Hope had a better day today. Less episodes. She also had a busy day that included: snuggling with Grandma & Grandpa Holtz, snuggling with Aunt Kim, taking a bath in the bathtub, and feeding from a bottle. Quite a busy day yet she STILL managed to find time to sleep through much of the excitement!

Daily Dose: Thursday, July 23

**disclaimer: Hope's Mommy & Daddy moved into their new house but do not have an internet connection yet, so Aunt Em is not being supplied with daily pictures

Hope's bronchioscope is schedule for bright and early Monday morning. She will be put under general anesthesia so they can get a good look at her airway. She still is having a lot of episodes. The ventilator changes and medicine changes don't seem to be doing much good. We are all praying the bronchioscope will give some insight.

Besides preparing for her big tests, Hope has had a very VERY busy few days with lots of family visiting. On Wednesday, Hope got to cuddle with her Great-grandpa Holtz and Great Uncle Phillip. She also got to meet Aunt Kim and Great Aunt Alice for the first time!! Then she got to spend time with Grandma & Grandpa Holtz. Today she got good snuggling time in with Mommy, Grandma Holtz, Grandpa Holtz, Aunt Kim and Daddy!! A normal baby would be all snuggled out but Hope is looking forward to more tomorrow!!

Daily Dose: Tuesday, July 21

Hope hasn't spent as much time with Mommy & Daddy the past few days. Hope's great-grandma Holtz turned 82 on Monday so Mommy & Daddy went to Toledo to celebrate with her. Today, they got to spend a few hours with Hope at least.

Since Mommy & Daddy were gone, Grandma R spent the past two days with Hope reading, playing and singing. They both had a very very good time.

The bronchioscope and FEES study are tentatively scheduled for this Friday afternoon. Until then they have increased her ventilator settings and she seems to be doing well with these changes. Her episodes have decreased somewhat so we are all hopeful that this trend will continue.

Daily Dose: Sunday, July 19

Hope had a good day today. She still had a handful of episodes, but not as many as yesterday. She enjoyed the day, spending lots of awake time playing with Mommy & Daddy. Hope's ventilator settings were increased slightly yesterday and her inhalers were also increased and changed. She is tolerating these changes well so far, and hopefully they will be helpful. Tomorrow we are hoping to hear more on getting the bronchoscope scheduled.

Hope is getting very big. She is now 22 inches long!!!! That's 10 full inches longer than when she was born, almost twice as long!!! Grow Hope Grow!!!!

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!