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!

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: Monday, July 13

Hope had a pretty good morning and afternoon today. She took 15 mls from a bottle today and did very well with it. As the day wore on, Hope seemed to be coughing more than usual and seemed pretty unhappy. Her heart rate was elevated to close to 200 and she was restless. Mommy & Daddy suctioned her trach (without getting much out), took her temp, fed her.... all without much success at cheering her up.

Since this was a little out the of ordinary for Hope, because she is quite the happy baby, Mommy & Daddy asked the doctor to come by and just take a look at her. He didn't see anything alarming, but just to be safe ordered some blood tests. After dinner while, waiting for the results, Hope had fallen asleep and was much calmer. The blood work so far has all come back normal.... so far it looks like Hope was just tired and maybe a little cranky :)

Daily Dose: Sunday, July 12

Hope had a better day today. She was awake for quite a while, and, as you can see, got to have play time with Aunt Em!!

Hope took a bottle today and that went really well. She is quite the little cutey and loves to play games where her arms move around and stretch.

Hope sends a big HAPPY BIRTHDAY to Great-Grandma Anderson who turned 94 today! Hope is very excited for next year when she can be at home with Great-Grandma to celebrate.

Daily Dose: Friday, July 10

Hope had a good day today. The number of her desats is dropping - the nurse today had a different template on the monitor so Mommy & Daddy did not get an accurate count.

Hope was really agitated for a couple of hours last night so the doctors decided to increase the frequency of her valium. Hopefully this goes well.

Mommy & Daddy finallyhad a family conference with the doctors, social worker and the discharge coordinator. Now, it seems like a plan is forming as to how to proceed from here to home. Still at least a month away...

Hope is doing well with her feedings too, but hasn't been gaining weight this past week. Mommy & Daddy were able to get the doctors to resume the nutritional fortification and we will see how that works.

Daily Dose: Thursday, July 9

Hope had a GREAT day today. She had many fewer events, still more than a few days ago but she is doing much better than yesterday. She was awake and played with Mommy & Daddy for about 6 full hours today! Hope also played with her physical therapist again today as well. He said Hope is doing much better since her surgery. She is able to be much more calm, alert and engaged in playing, just like little girls should be.

Tomorrow Mommy & Daddy are going to talk to the doctors about getting Hope ready to try to take the bottle again. Hopefully they will say she can because Hope is VERY excited about that idea.

Daily Dose: Wednesday, July 8

Hope had a rough night last night and her morning was a bit rough as well. Yesterday, the doctors weaned Hope's ventilator settings down quite a bit even though Hope had an increased number of desats. The wean apparently went too far for Hope's pleasure because she had 50 events between 8pm last night when Mommy & Daddy left and 10am today when her ventilatory support was raised- 50 events is the amount that the computer can store. After her settings were raised, Hope did much better, but still had a few events because her respiratory reserves weren't quite caught up.

Hope was much more pleasant and far less agitated today. She had a very very large #2 (poop) last night that made her much more comfortable.

As you can see from the picture, Hope is still getting the "glove" treatment, and no one is very happy about it.

Daily Dose: Tuesday, July 7

Happy 7th Month Birthday Hope!!!!

Other than the usual birthday celebration, Hope had an okay day. She was a bit restless and agitated most of the day, which ended up being caused by some constipation since she hadn't pooped all day long!!! I personally can't blame her for being uncomfortable. The doctors are still very happy with her blood gasses and how they are progressing so they weaned down her ventilator support a little bit more today. We pray she will continue to do well with this weaning practice.

Daily Dose: Monday, July 6

Hope had another great day today. She has been weaned down on her ventilator settings again and seems to be tolerating it well so far.

Hope only got one dose of tylenol last night and one dose today but seems to be feeling better. She doesn't appear to be in much pain anymore which is GREAT!!!

Daily Dose: Sunday, July 5

Today was a good day for Hope. She continues to do marvelously after her surgery. She has gone from having roughly 40-50 alarms- a portion of which are true "events", a fewer portion are "significant events" and even few cause any big concern or uproar- to having................ (insert drumroll here)................................... 5 events!!!!! This is great progress! There is a possibility that these have been reduced due to the sedation Hope was on following her surgery since this also happened after Hope's tracheostomy, but as she continued to recover from that surgery they gradually increased. We hope that these have honestly improved, not just because of her sedation, and we will update this number every day from now on.

Hope was very excited to be able to wear clothes again. As you can see, she is wearing a floral number from the Hope Collection.

Daily Dose: Saturday, July 4th

Happy 4th of July Everyone!!!!

Hope had a great day today- she is recovering very well from her surgery. She should be back to full feeds by midnight, which means her IV can be taken out!! Hope has had a few excellent blood gasses so the doctors will likely continue to wean on her support tonight.

Hope is also weaning off her morphine so she is now getting Tylenol for her pain. This means that Hope was more awake and interactive today. While she is interactive, she is still a little moody, she is most likely thinking: "This may not hurt right now, but I'm still PISSED."

As you can see, Hope was very patriotic today. Her new patriotic bow is courtesy of Nurse Emily, one of Hope's favorites. It looked very cute but as you can see from the first picture, it also was very tasty.

We are all hoping tomorrow goes as well as today.

Daily Dose: Friday, July 3

Hope has been quite the trooper after her surgery. Unfortunately she is in pain, but the nurses are trying to minimize that, so Hope spent the last 24 hours in a morphine induced sleep.

The doctors think that Hope is progressing well. She has resumed her feeds already and is doing well with them. If anything, she seems to be ahead of the curve with her recovery. Hopefully she will work up to full feeds by tomorrow or Sunday night.

You can see in the picture Hope's little surgery scars. The horizontal one on the bottom is from her reconnection surgery. Then the vertical one in the middle is from the last surgery. Even with the scars and bandages she is still the cutest little girl I have ever seen.

Surgery Update

Just wanted to give everyone a quick update... Hope's surgery went well yesterday. She tolerated the anesthesia and surgery well. They finished up around 8:00pm and Hope was settled back into her bed by 8:30. As of 10:30 last night the anesthesia had started to wear off and she was starting to act a bit uncomfortable. Her nurse gave her a dose of morphine and a dose of valium. Once she settled down, she slept well through the night. Her blood gasses are looking very good and she wasn't on any additional oxygen as of this morning.

Thank you to everyone for all the warm thoughts and prayers. We are all so relieved that she did so well.

Daily Dose: Thursday, July 1

Hope is prepared and ready to go for surgery tomorrow. She is tentatively on the schedule for 2pm but if emergencies (other surgeries) come up she may get bumped later in the day or even to Friday morning. Hope spend all day getting ready for her surgery. She took a long soak in the tub. Hope won't be able to take a bath for 10 days (ewwwww) or so after the surgery, but once she is all healed up and her incision looks good she'll be back to splashing around just like the does now.

As of last night Hope was up to 10 pounds 13 ounces!!!! She is getting closer and closer to 11 pounds!

As you can see, Hope is still maintaining her fashion sense. She is modeling a new ensemble from the Hope Collection. *Note the matching socks.

Hope has had lots of visitors in the last week and wants to thank everyone that has come to visit her: Nancy Vardon, Judy Convertini, Caitlin Zinnecker, Joyce Carlson and Pastor Ruth. She loves seeing all of these people who care so much about her!!