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: Tuesday, June 16

Hope started her day off with more bottle feeding. She was supposed to only be able to try drinking 10ml, however, there was 30 ml in the bottle and Hope just downed it all. This was great news, and hopefully they will be doing a swallow study soon to see how things are going.

Hope was having some problems digesting, with big residuals left over. The doctors did an xray and found that Hope has a loop in her intestines. The doctors aren't too concerned about this at this stage, but will keep an eye on things just to be safe.

Daily Dose: Friday, May 8

Hope was not a happy camper today. She started off the day with a temp, spiking at 103! Her nurse unbundled her and took off her warm clothes, then gave her a nice wipe down with a cool cloth. Within an hour she had cooled back down to around 97. The doctors were worried she might have another infection, but a blood work up showed nothing out of the ordinary. It is possible she just got overheated. Since she didn't have any other temperature spikes the rest of the day it is evident that Hope will need to learn from Aunt Em how to soak up the sun without overheating (aka Aunt Em & Hope go on vacation and Aunt Em shows Hope the ropes of the beach).

Hope had a chest xray this morning and that looked clearer than it has in quite some time. Since it was so clear they were able to notice somethings that were different. her diaphragm is higher on the right than it should be. They weren't sure if this was due to pulled muscles or nerves, internal organs pushing up on it, or if there was something wrong with her diaphragm. They ordered some extra imaging to see if her diaphragm was moving normally. The imaging showed that her diaphragm is functioning normally, which is great, so at this point no one is too concerned about it causing problems. It might be due to muscle weakness and may correct over time, or it might just be the way Hope will always be, perfect in her own way =)

Grandpa & Grandma R were able to see Hope again today because the hospital was reopened, finally. They both took advantage of this with some good snuggling.

Daily Dose: Monday, May 4

Hope had a good day today. Her ventilator rate was lowered and her pressure support was increased. In layman's terms: Hope is breathing more on her own but the ventilator is helping her to take deep breaths when she breathes. She had a chest x-ray today and it looked much better.

The doctors did Hope's first trach change today. The dressings from her surgery were getting a bit smelly. Hope is becoming quite the picky girl, so she wanted those stinky dressings GONE! Hope tolerated the change well. Mommy & Daddy will soon be learning how to do the change themselves. They have to take 2 classes and successfully change the trach 3 times each before they'll let Hope go home. Aunt Em has suggested that they take the class and do all the trial runs this week so Hope can come home, but apparently there is more to it than that.

Daily Dose: Thursday, March 26

Another great day for Hope!!!! Today Hope spent most of her day resting and recovering. Hope is still getting some Morphine and Versed which is keeping her very very comfortable. She had a chest x-ray this morning which showed improvement from yesterday's x-rays so her ventilator settings did not change.

Hope has peed off some more of the fluid she was retaining so her weight was 2310 grams today, but no worries, that is still above the 5 pound mark!!!!

Even though Hope hasn't been feeling her best lately, like a true fashion icon that she is, she did not let that get in the way of her high fashion lifestyle. Today Hope was modeling a new addition to the Hope Collection: a rockin' pink hat (brought to you from designers "cousins Kelly and Jerry"). Hope sent a special message to Aunt Em today, she said that she is truly beginning to understand how difficult it is to live in the world of high fashion and that she will need Aunt Em to teach her all the ins and outs, which obviously means A LOT OF SHOPPING in the future. I guess we can handle that.....

Prayers for Hope

Hope had a rough night last night. Her blood pressure is down so she has been started on Dopamine to raise her blood pressure. They think she has an infection but they are unable to find the source of it yet. Her urine output is not what it should be. X-rays and blood cultures have been done. X-rays of her "gut" (a KUB) and chest showed that everything was normal, but we have to play the waiting game with the blood cultures.

The doctors are encouraged because they say she doesn't "look" sick and has been more active than yesterday. Please pray that they are able to pinpoint what is making our little Hope sick and help her feel better soon so she can keep growing and getting strong.

Daily Dose: Thursday, February 19

Hope: day 74

Hope had another good day today. The good news is that her blood work is "textbook perfect" according to the doctors. She hasn't had anymore episodes over night or all day. She had a few desats but that was her way of telling Mommy & Daddy she wasn't comfy, because when she was repositioned she was sating 96-100, where she should be.

Hope's chest x-ray looked better today than it has in the past week week or more so they decided to stop the percussive therapy. She spent about 2 hours snuggling with Mommy so both Hope and Mommy were very happy. She gained a little bit of weight today, approximately 10 grams, increasing her fattyness factor to a total of 1430 grams.

Sidenote.... Aunt Em is in New York City attending a conference and EVERYONE is asking about Hope. The typical conversation goes:
Friend: Hey Emily
Aunt Em: Hi, how are you?
Friend: Good, how's Hope?

Aunt Em doesn't get asked how she's doing, but she is doing great so that's fine. Bring on all the support of Hope. At least 25 people have seen Hope's pictures tonight since Aunt Em arrived. Hope has support from all over and that makes a big difference, so keep the support coming.

Daily Hope: Tuesday, February 10

Hope: day 65

Hope had a little excitement last night. She had an "episode" so they ran bloodwork, did a chest x-ray, blood culture, and a urine culture. The chest x-ray showed she had poor expansion, so she is now on percussive treatment and an inhaler. We are still waiting on the results from the cultures. The CBC bloodwork showed that her crit was low, so she also had an infusion, which makes her color much better!!

Hope's weight gained 100 grams overnight!!! That is a whopping 1340 grams, 2 pounds 15 ounces (which is just 21 grams short of 3 pounds!!!) But, we don't want to get TOOO excited because the weight could be a bit inaccurate and show a loss tomorrow, so we just have to weight and see!! (pun intended)

Hope was a movie star today as well, she was videotaped during her percussive treatments. We'll post those a little later.

Daily Hope: Friday, February 6

Hope: day 61

Hope had a pretty rough day today. The attending doctor looked at her follow-up KUB x-ray from last night and thought that it looked as thought the gas wasn't moving as well as it should so they consulted with the surgeons who had worked on her intestines and they decided to perform an upper GI, only in reverse. Since she has a nice little "port" (what Aunt Em refers to as her nubbin) that goes straight to her intestines they were able to put the dye in via her ostomy site and imaged it running in reverse, tricky. They were looking to see if she had any scar tissue that might be forming from the previous surgery and possibly blocking or slowing things down. The great news was there was no signs of that or any other trouble.

Hope is so adventuresome. All her previous procedures and tests were performed at her bedside because she was on the jet ventilator and wasn't stable enough to travel. Today, however, she got to ride in a transport isolette and took the elevators all the way from the 3rd floor to the 1st floor where the radiology department is She was wide awake for the trip and was just laying back, taking it all in, like the good little adventurer she is. She tolerated the travel and tests very well. There was lots of big equipment in the room where they did the imaging so Hope felt OVERLY small on the very big table the put her on, but thankfully Peggy (Hope's favorite RT) was there and held her hand to keep her company while they ran the tests. A big THANK YOU to Peggy for making her feel better.

They stopped Hope's feeds while they were waiting for the surgeons, radiology and while running the tests, so she resumed feeds at 5pm tonight. They didn't weigh her because of all the other adventures. They also didn't want to take her CPAP mask off because she was having a lot of "episodes" today. She de-satted and dropped her heartrate SEVERAL times today (scarring Mommy & Daddy) and a couple of times she needed some stimulation and oxygen to help her remember to breathe again. The doctor things she may have outgrown her caffeine dose so that will be increased later today and another dose starting tomorrow.

Hope didn't seem like she felt good today, which made Mommy, Daddy & the Grandparents worry. But hopefully tomorrow she will perk back up.

Other good news is that the blood cultures from yesterday hadn't come back with any growth today, but Hope will get an additional antibiotic today just to be on the safe side.

Hope's Great-Grandpa Holtz is sympathizing with Hope tonight as he is now spending the night in the hospital as well. He passed out earlier today and had to be taken to the hospital. The doctors said his heart is beating irregularly (the top is beating faster than the bottom). Hope is praying that Great-Grandpa's doctors will take as good care of him as Hope's doctors have taken of her, and if they do she's sure he'll be healthy and back home soon. So please say an extra prayer for Hope's Great-Grandpa Holtz.

Pray for Hope

Pray for Hope as she is going down to x-ray for a GI series. They want to make sure her bowels have no bad loops in them. They are trying to figure out why she is not gaining weight. We hope that this x-ray series finds her bowels in good conditions and also is helpful in solving the weight gain issue.


********UPDATE******
All the x-rays and test results came back normal. They are unsure why she is not gaining weight, but we are all very thankful that there aren't any big problems right now.

Daily Hope: Thursday, February 5

Daddy reading some poetry to Hope

Hope: day 60

Hope was very culturally enriched today because Daddy was reading her poetry. She enjoyed the poetry so much that she struck a very artistic pose for today's daily dose.

Today was a great day for Hope. Last night they started her back on TPN (the nutrients that come through the IV) so today was her first day with reduced feeds. She lost weight, apparently confused by the Biggest Loser (tv show) and Biggest Fatty (NICU competition), and is now down to 1140 grams. But.... they expected she might lose a little weight today since she "disposed" of so much of her food on Tuesday before being cut back.

Hope had another "blonde" moment today and either forgot to breathe or got tired of breathing, causing some apnea. Her heart rate dipped and her stats dropped but they brought them back up fairly quickly. Since she has had a few of these episodes over the last few days she got another chest x-ray. Everything looked good on the x-ray, so that is something to be thankful for. Her residual was discolored today so they got a KUB x-ray earlier today. That x-ray appeared to show some pockets of air, so another x-ray was ordered to make sure things were moving and they are. Hope has a bit of air in her stomach and digestive system but that could be from the CPAP pushing air in. Hope also had a complete blood work-up today and that came back looking good.

In other news.... Grandma & Grandpa Robinson finally left the hotel they have called home for almost 2 months and moved into an apartment in Indianapolis. The good news is that Mommy & Daddy moved in too!! They left the McCrib and now everyone is staying under one roof. The McCrib was great and everyone was so supportive but it will be good to have a kitchen they can cook in, and be able to get away (even if only a little bit) from the stress and chaos surrounding the hospital area.