Moving Right Along

Yum - squash!

Loving being vent free!

Hope and Daddy hanging out

Hope has continued to make great progress with more and more time off of the ventilator. She is now up to 3 1/2 hours twice a day off the vent and today we will go up to 4 to 4 1/2 if she tolerates it. She loves being vent free and sometimes gets mad when we put her back on the ventilator. Like a typical 2-year old she will often grab the tubing, disconnect it and throw it on the floor!

Last week we went for a cochlear programming appointment. When they tested Hope's nerve response we found that Hope loves sound LOUD. The louder the test got the happier Hope got. She started out smiling, then giggling then outright laughing at the louder sounds! We tried her in the sound booth again (something we haven't done since she's had the implant). Prior to getting the implant when they put her in the sound booth and played sounds Hope didn't really respond at all. This time she laughed at every sound they played. What a remarkable difference!

February has been a month of many trips to Ann Arbor. Two weeks ago we went to U of M for a video swallow study. Hope had an appointment earlier in the day with her cochlear implant surgeon. He was happy with how everything looks. By the time we got to the swallow study though, Hope was ready for a nap and just wanted to sleep. She struggled with the swallow study. To do the swallow study they give her barium by mouth and watch on x-ray what happens. Since Hope was so sleepy she didn't do well with thin liquids. We are going to keep practicing with some thickened liquids and pureed foods and try the study again in the future to see if she will do better next time.

Hope was scheduled to have a video EEG done earlier this week but a snow storm kept us home instead. We will be rescheduling the test for sometime in the future.

For now we are all looking forward to warmer weather when we can get outside and run around without the ventilator! Hope thinks a tree swing sounds like fun!!

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: Wednesday, June 24

Hope dancing in her bouncy seat

Hope had a busy day today. She had three BIG tests done. An Upper GI, a small bowel followthrough, and a video swallow study. Hope tolerated all of the tests well. The initial results look good but the doctors will tell us more tomorrow.

Hope is quite the dancing machine in her little bouncy chair, she's not going to let much hold her back.

Daily Dose: Tuesday, June 23

Hope did not have her swallow study done today. The doctor called a few minutes prior to the scheduled time and said he couldn't make it, postponing it until next Tuesday. This is a little disappointing as everyone wanted to know how Hope was doing on her swallowing and possibly increasing her oral feeds. The doctor did approve her to resume her daily bottle feeding while she waits for the study.

Hope had an eye exam today. The exam showed no changes so she will have her eyes checked again before discharge. As you can see, Hope is really getting used to her new surroundings and is really hamming it up. She loves to get her beauty sleep, so the eye mask that she had to wear after the eye exam was welcome!!

Daily Dose: Monday, June 22

Hope had a good day today!!! She was awake for most of the day. She had many visitors and got to meet great aunt Sue, great uncle Tom and cousin Jeff (all from Iowa). They were very excited and happy to meet Hope.

Tomorrow will be a big day for Hope. First thing in the morning she has her swallow study. They are going to put a camera down her throat to see if she is swallowing things properly. Hopefully she will do GREAT with the test and be able to resume her oral feedings soon!

Hope was very excited to meet more of her extended family today but was even more excited to with Grandma & Grandpa Robinson a happy 41st anniversary!!!

Daily Dose: Sunday, June 21

Hope had a not so comfortable day today. She had a great morning until Mommy & Daddy got to the hospital. At that point, Hope gave Daddy a special "Happy Father's Day" gift by going through a bad brady and desat, promptly followed with two more events within the hour. Not exactly the Father's Day gift Daddy was looking for.

The pulmonologist decided that it would be best for Hope not to try her bottle feeding again until after she has her swallow study on Tuesday. Based on the results of her last chest xray, it seem that she is aspirating a small amount of the feedings into her lungs, but we won't know for sure until after her study.

Hope looked pretty restless throughout the day and appeared as though her tummy hurt. As Daddy held her, Hope seemed to calm down and be on the upward swing.

Grandma and Grandpa Robinson visited Hope this afternoon and Hope snuggled with Mommy & Daddy today.

Daily Dose: Saturday, June 20

Hope had a nice day today. She had a good soak in the tub and then took a post-bath nap. She took the bottle again with no problems, and they have finally scheduled the swallow study which will happen on Tuesday. Hopefully it shows good results and Hope can start more bottle feeds!

The doctors are thinking about weaning Hope off the valium and trying a different drug that might help with any tummy aches she is having.

Hope is steadily growing, now weighing just over 10 pounds 10 ounces!!!!