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.

Daily Dose, Friday May 29

Overall today was a good day for Hope. She spent a good deal of the day awake and playing not only with mommy and daddy but with her new balloon. Daddy bought Hope a bumble bee balloon and she loves it! She likes to have it tied to her wrist so it will bounce up and down when she moves her arm. As you can see by the picture she spent a bit of time just staring at her new friend today.

The developmental pediatrician visited with Hope today. They haven't scheduled the swallow test yet because Hope is still pretty sleepy because of the valium. The doctor had some trouble waking Hope up and so they decided to lower the dose of valium she gets during the day in Hope of helping her to be not so sleepy.

Hope's ventilator settings were lowered once again today. She is breathing on her own once again with just the pressure support and air pressure coming from the ventilator. The plan is to wean her down a little further in the next few days.

Hope had such a big weight gain yesterday that she decided to take a break and remain even on the scale today...maybe tomorrow she'll break the 9 pound mark!!

Daily Dose, Wednesday May 27

Another good day for Hope. She was able to do non-nutritive feeding today and tolerated it very well. This should put her on a good track for getting a swallow study on Thursday. We will also reevaluate the valium dosing on Thursday.

The doctors cut Hope's ventilator rate in half today. So far she is tolerating it very well and continues to breath over the ventilator.

Hope spent a lot of time cuddling with mommy and daddy today. She modeled a new outfit from the Hope collection. As you can see she is very ready for summer!

Daily Dose, Tuesday May 26

Hope spent most of the day sleeping today. Everyone is keeping a close eye on her to make sure that she is getting enough valium that she is relaxed and comfortable, but not so much that she sleeps all the time. At this point we are going to keep the dosage the same, but monitor her on a daily basis.

Hope spent some time with her physical therapist this morning and they were very pleased with what they saw. Hope has been practicing every day with daddy and mommy and she showed the physical therapist just how well she is doing learning how to hold her head up.

The big news of the day was that the developmental pediatricians started their evaluation of Hope for oral feeding. She was pretty sleepy but they were pleased with what they saw. Hope took a bottle happily and without any trouble. They want her to resume the non-nutritive feedings and if that goes well they will put Hope through a swallow study later this week to assure she is not having any reflux or swallowing issues. Hopefully she will do well with this and she will soon be able to take some of her food orally instead of all by feeding tube as she does now.

Daily Dose, Thursday May 21

Hope was restless last night. Her nurse couldn't get her comfortable for several hours so this morning they decided to increase the amount of valium that she is getting. Hope's mommy and daddy were not happy about this because they don't want to drug Hope any more that she needs and they want her to be as awake as possible not constantly sedated. Everyone finally agreed that we would try the increased dose and see how Hope reacts to it.

Despite the increased valium, Hope was able to get in some good practice sitting up today. Hope likes to sit up and get a change of scenery. She loves to look around at all the machines, lights and people.

Hope is modeling a very cute new pink outfit today. This outfit comes from her good friends the Haveman's - Hope loved dressing up and looking so pretty today.

Daily Dose, Tuesday May 19

Hope spent a little while chillin' on her tummy last night before she got agitated again. She couldn't get comfortable no matter what was tried. Finally this morning her nurse gave her a dose of valium to try to get her to relax and rest today. This made Hope VERY happy for a couple of hours.

Her cultures still have not grown anything and so the new suspicion is that perhaps she caught something viral and not bacterial. She seems to be feeling a bit better day by day and now is just agitated that she is not feeling all the way better yet.

Hope has reached another weight milestone. She weighed in at 3640 grams today which is just over ..... 8 POUNDS!!!