Making Progress

Hope with Great Grandma Anderson

Hope & Aunt Emily

All healed up

Hope has had a wonderful couple of weeks. As you can see from the picture, the incision from her surgery has healed to the point you can hardly even see it. She saw the surgeon at U of M last week and he was very happy with how it all looks. The big activation day is just a couple weeks away now!

Hope has also made great progress on the ventilator. At her appointment with the pulmonologist we put together a plan to begin weaning Hope's ventilator settings on a regular basis. On this wean we took her rate from 31 breaths per minute down to 29. She has done very well with it and if she continues to do so, we will lower the rate by 2 every two weeks. After she reaches a rate of 21 we will begin to lower the PEEP (the amount of pressure that the vent gives her continuously to keep her airway open).

Hope is also now on less oxygen. She has done great with that as well. In addition to ALL of this Hope is now getting only 2 breathing treatments each day. This makes her very happy because she really doesn't like getting the breathing treatments.

All of these changes are little steps towards getting Hope off of the ventilator - which goes without saying, would be WONDERFUL!!

Post Surgery Update

Hope made it very successfully through her cochlear implant surgery. She arrived at U of M and check in around 12:30pm on Thursday. After getting all checked out (blood pressure, temperature, weight etc) we found out that they had not reserved a bed (room) for her following the surgery. There was a scramble to find a bed and when we came close to not being able to find one for her we almost had to pack up and come home. That would not have made anyone very happy! Eventually though (about 2 hours later) they had a bed for her and Hope was wheeled off for surgery.

The surgery began with a test that involved putting needles in her ear and electrically stimulating her auditory nerve. They began with the right ear and found no response. Then they tested the left ear. They had to use more "power" than usual but were able to get a good clear response on the left side. However, they found that as they repeated the stimulation the response diminished. This is called "Adaptation". Unfortunately there isn't a lot of research or knowledge available on this condition. The surgeon felt that it was still worth proceeding and that Hope would still be able to gain access to sound by having the implant done.

Hope's mom, dad, Grandma Holtz, Grandpa Holtz, Grandma Robinson and Grandpa Robinson all waited patently in waiting area for the next 5 hours while the surgery was performed. Everyone was very eager to see her after the surgery and she looked great! She was a bit groggy but seemed to be feeling well. Hope had to stay one night in the hospital but was released the next morning. Although she has been a little more sleepy than usual, she is feeling well and is mostly back to her normal self. There is just a small incision behind her left ear. She will go back to see the surgeon again in two weeks and the big day of activation is August 17th!

Daily Hope: Friday, June 11, 2010

Hope is doing great! Her vent rate was weaned to 31 and she has been doing very good with it. Today Hope, along with Mommy & Daddy and Grandma R., are in Ann Arbor for Hope's final pre-surgery visit. Hope will be meeting with the surgeon for her final consultation before her big day in a few weeks.

As you can see from the picture, Hope is figured out how to grow tall!! She is now 28 1/2 inches tall! Grow Hope Grow!!

Wednesday, March 3, 2010

Hope has had a busy week. She made two trips to Ann Arbor; one on Friday and one on Tuesday. The trip on Friday was quite the adventure for Hope. Hope, Mommy, Daddy and Grandpa Robinson all made the drive to Ann Arbor with no trouble, but while they were there it started to snow. The roads got really bad and it took them all twice as long as it should have to get home. Thankfully they all made it safely. The trip on Tuesday was much better, with lots of sunshine and no snow!

The doctor visits themselves are more of a formality at this point. Hope has to go through some basic hearing tests in the sound booth. They play sounds into earphones in Hope's ears to see if she seems like she is responding to the sound. She also had to meet with a speech therapist to determine her basic level of communication. So far everyone has determined that the cochlear implants are neccessary and wouuld benefit Hope greatly. We meet with the surgeon next week on Friday and then have one more consultation with the audiologist. The surgery hasn't been scheduled yet but we should know more about that before long.

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: 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!!

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: Saturday, May 2

Hope was a little uncomfortable today. She hadn't had a "number 2" since surgery so she was getting pretty constipated and was NOT happy about it. The nurses gave her more versed and morphine to keep her comfortable and as of tonight she finally had a number 2. Hopefully she will be feeling better soon.

Hope was looking a little bit puffy from the post surgery and her weight was up to 3140 grams.

Hope had a fairly quiet day. Riley is closed to all guests except parents (due to this flu garbage), so Grandma & Grandpa R are waiting patiently to get back in there.

Daily Dose: Wednesday, April 29

Hope is looking at something interesting

"Did you just say I have more new clothes?"

"This is what I think about CPAP"

Hope had a quiet day today, which we are all thankful for. She had no episodes, gained 20 grams (putting her up to 3070 grams), went up slightly on her feeds and nutritional supplements, and got some great snuggle time with Grandpa R, Mommy & Daddy.

While Hope was chilling today, Mommy & Daddy had a very big day. They had a discussion with the doctors to discuss what happens between now and Hope's discharge, aka "care conference." The doctors are firmly recommending a tracheotomy and Mommy & Daddy have consented to that. It will take Hope a couple of weeks to recover from the surgery. After that the focus will be on weaning her back off the ventilator as she will be on it for surgery, and then determining whether or not she will be able to feed orally. If she isn't able to get most of her nutrition orally, Hope will have to have another surgery to have a G tube put in. That will provide semi-permanent access to her stomach.

Breaking it down.... Hope is going to have a tracheotomy. If she does well with the tracheotomy and feeding, the anticipated arrival home is 5-7 weeks. This is a little bit longer than we had anticipated, but it is not devastating because there is finally a light at the end of the tunnel, a ribbon at the end of the marathon, an exit off the highway, a... (ok, I think you get the point) Please pray for ALL of us that we can find patience with this new knowledge and our extended stay in Indianapolis. A special prayer request straight from Hope: please pray that Daddy can keep his mouth shut and not make a scene for a few more weeks. Apparently Hope knows her Daddy just as well as the rest of us and she's only 5 months old!!!

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.....

Daily Dose: Wednesday, March 25

Hope had another very restful and recovery filled day. Everyone is very excited at how well she is recovering from the big surgery. Today her nurse said that Hope is exhibiting the "best case scenario"!!! Hope's surgeon came and checked on her and said he thinks she is "coming out of the woods".

Hope hasn't gotten very puffy, which they expected her to, and the fluid she has retained she has been steadily peeing off. Hope's heart rate continued to be back down in the normal range and her blood gasses were all good. Her chest x-ray showed that she was a little under-inflated, but after she was repositioned that helped and it got better.

Hope is obviously retaining some fluid, which might possibly be skewing her weight, but she weighed in today as the biggest fatty FOR SURE!!! She weighed in at 2390 grams, which is 5 pounds 4 ounces!!!! That's right, over 5 pounds!!! Way to go biggest fatty!!!

Daily Dose: Tuesday, March 24

Hope had a very restful day today. She spent the day on Morphine to relieve the pain and Versed to forget that she ever had surgery. By tonight her blood pressure and heart rate had leveled out somewhat, so that is good.

Hope had another eye exam today and there was no change from two weeks ago, so we are grateful that everything still looks good. The doctors and nurses are very happy with her recovery so far. They were prepared for Hope to be very sick today (in typical Robinson style) but so far she has done really well.

We are thankful for a good day today and we look forward to another one tomorrow and many more in the future.

Update on Hope

Hope, Pre-surgery, Just chillin'

Hope, Post-surgery, with her pretty pink bow

Thank you everyone for all your thoughts and prayers for Hope today. As Aunt Em as said, surgery went well for Hope today. The surgeons were very happy with how everything went. Hope is resting sound tonight with some morphine to help with her pain. She got a little too warm after surgery and that caused her heartrate to be a bit elevated but once they got her cooled off a bit she settled right down. Everyone thought she might get a bit puffy (one of the side effects of the surgery) but so far she is not showing any signs of this. All in a all a great day for Hope - one more (Huge) step closer to coming home.

As you can see from the picture Hope was not about to let surgery hold her back from being stylish. Erin (one of her very nice nurses) made her a pretty pink bow to wear while she is recovering. Thank you Erin!

Pray for Hope

Hope has had a great morning. Grandpa says she was wide awake and "it must be nice not knowing what's ahead." They took Hope down to the OR for her reconnection surgery. The doctors expect this surgery to last around 3 hours. Please pray for the doctors, that they will have skilled hands. Pray for Hope, that she will handle the procedure well and bounce back quickly. And pray for Hope's family as they wait anxiously, knowing that it is out of their hands.



UPDATE***** 2.35pm EST*****

Hope is out of surgery. The doctors said everything went well. They found a small obstruction in her lower bowel which they think may have been the cause of the infections. They pushed that through fine. They also removed her appendix for good measure so she won't have to worry about complications with that later. She is back on the ventilator and will be for a few days but looks like everything went well.

Daily Dose, Friday March 20

The big day has been scheduled! Hope is having surgery on Monday around 10 am. It should take about 3 hours to complete. The surgeons feel confident that the surgery will go well, but Hope wants everyone to pray for a good outcome.

Hope continued to gain weight today with a weight of 2040 grams - 1 gram shy of 4lbs 8 ounces. She is doing very well with her non-nutritive breastfeeding too. In fact when her nurse checked to see if she had anything in her tummy on Thursday evening she was pleasantly surprised to find 6 mls of breastmilk! Looks like the non-nutritive feedings are more nutritive than expected. This is an amazing milestone for Hope, because it means she has figured out the suck-swallow-breathe combination which is a huge step in her development. Mommy and Daddy (and everyone else too) are SO pround of her!

Hope finally got to cuddle with Grandpa and Grandma Holtz today. All three have been anxiously awaiting this day and the time flew by too quickly for everyone. Since Grandma and Grandpa will be visiting for another couple of days Hope is looking forward to getting some more cuddle time with them very soon.

Daily Dose, Thursday March 19

Hope had a very good day today. She didn't have any major respiratory or heart rate drops today.

As for her weight....*drumroll please*...... 2020 grams!! She has reached her minimum weight goal for her surgery!! At 4lbs 7oz Hope is now big enough for the surgeons to be comfortable doing her surgery. They stopped by to see Hope today and think they will do the surgery either next Monday or next Friday (they say it's going to be a busy week for them and they'll have to see when it will best fit in).

Hope was excited to see Grandma Holtz today (Grandma Holtz was pretty excited to see Hope today too). Grandpa Holtz will be coming to visit first thing in the morning and Hope is resting up tonight for a big day of cuddling tomorrow!

Daily Dose, Wednesday March 18

Hope had an episode free day today!!! Hopefully these will continue and she'll continue to breathe well and keep her heart rate up.

Hope is ALMOST to her 2000 gram weight goal. Her bed also serves as a scale and it is not always exactly accurate. The first weight they took today was actually 2000 grams, but they usually do at least 2 or 3 weights to get the most accurate. They weight they took as the final weight for today was 1990 grams (4lbs 6oz) - only 10 grams away from her goal!! The surgery team is thinking of doing Hope's reconnection surgery sometime next week, but nothing is scheduled for sure yet.

She got lots of cuddle time in today: cuddling with mommy, daddy, Grandpa Robinson and Grandma Robinson. She's looking forward to cuddling in the next day or two with Grandma and Grandpa Holtz!!

Daily Dose: Tuesday, March 10

Hope: day 93

LOOK AT THAT SMILE!!! Isn't she beautiful?!?!

Hope had an overall very good day today. She had a minor bump being that she had some more yellow residuals last night and had high ostomy output, so they stopped her breastmilk feeds. They will wait a day or two then try again.

Hope had a follow up eye exam today and her ROP has improved. Everyone is very pleased with this and they are going to follow up in 2 weeks.

Hope's surgeons and the infectious disease department got together today to discuss Hope's situation. They are thinking that there may be a tiny part of her intestines that are permitting bacteria to pass over to her blood, causing her frequent blood infections. The surgeons think they can easily correct this when they go in for her reconnection surgery, so.... they have decided that they are going to let her current antibiotics take their course (either 6 or 13 days more) and then do her big surgery immediately after. Now, just like every other day, we need the prayers to keep coming because Hope most likely has a really big week ahead of her.

As you can see, Hope is sporting a new selection from the Hope Collection. Everything she wears looks beautiful and it seems as though she likes this ensemble because she is beaming!!