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: 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: 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: 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: 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: 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!!!!

Daily Dose: Wednesday, June 17

Hope was moved back to her regular room today, but has an improved spot. She is now in the position next to the window so she can get lots of sunlight, but don't worry, Aunt Em will be sure to share with Hope the importance of sunscreen when tanning.

Hope worked with her physical therapist today and he thought she was doing well. She also took another 30ml bottle!!

Hope was a little less than exciting when she had to get her 6 month immunizations, but it is part of growing up and being a big girl so she endured.

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: Monday, June 15

Hope has already mastered the pout

Hope loves to be read to

Today was quite an exciting day for little Hope. The most exciting part was that Aunt Em was back !!! Aunt Em and Hope spent the entire afternoon together, snuggling, reading, talking (well Aunt Em did the talking and Hope listened, squeaking her approval or disapproval every now and then). Hope listened to a story about the ladybird (aka ladybug in Ireland) who got lost and had to find her way home.

Medically, Hope had other exciting things today. She tried a bottle for a few minutes and that went very well. Hope will be trying again tomorrow. Hope also had some play time on the floor, doing her exercises and tummy time.

Another exciting part of today was that Hope got to take a ride in her bed to a new room where she has a great window view. Hope's current room is getting redecorated, so she has been relocated but only temporarily, moving back tomorrow or the next day.

Daily Dose, Thursday June 11

Hope was tired today. She was up most of the night admiring the beautiful baby that appeared in the mirror that was put in her bed overnight.

The doctors think that since Hope has been doing much better not arching her back and having fewer severe episodes, they want to try to reduce the amount of valium she is getting. Hopefully this will allow her to be more alert during the day but still remain calm and comfortable.

Since she was so tired and slept so much today, Hope didn't get to try a bottle feeding today. Hopefully she will be a little more alert tomorrow and will be able to show everyone how well she can eat from a bottle.