Daily Dose, Sunday May 31

Today was a quiet restful day for Hope. She spent the day doing a little bit of all of her favorite things: cuddling with daddy, cuddling with mommy, lounging in her boppy, swinging in her swing, playing with her balloon and sitting up and watching all the people walk by.

Her blood gas this morning was good so her ventilator settings were lowered again today. She appears to be on a good trend and hopefully they will be able to continue to lower her support throughout the week.

Hope weighed a whopping 9 lbs 2 ounces today (4,150 grams). She is now 20 inches long. At the rate she is growing, she will be pushing 10 pounds before we know it!

Daily Dose, Saturday May 30

Hope spent most of the day today awake and alert. She spent a lot of time sitting in daddy and mommy's laps and looking all around checking things out. She is still very intrigued by her balloon friend and she played with him for a while today.

In order to rule out that Hope's episodes are caused by seizure activity the doctors have ordered another EEG for Tuesday. Hope had an EEG done back in April but it was only over a short duration (15 or 20 minutes) and since Hope slept sound through it the doctors did not see anything suspicious. This time she will likely have a longer EEG test run (up to 24 hours long) in order to catch a larger time period and hopefully see what happens when she has an event.

Hope's blood gas was good this morning but not stellar so they decided not to make any changes to the ventilator settings today. If her gas is good tomorrow they will consider weaning tomorrow.

As you probably all know from reading lately Hope has been growing by leaps and bounds. Today was a big day for her - she broke through the NINE POUND mark!! As if it were even possible for any of us to forget.... Hope was born at 1 pound 8 ounces. She is now over 6 times what her birth weight was!!!

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, Thursday May 28

Hope had another good day today. Hope's blood gas results this morning were very good, so the doctor weaned more on her respiratory support. This seems to be going well, and Hope is looking forward to more weaning in the next couple of days.

Tomorrow developmental pediatrics will come to consult on Hope's ability to swallow. If things look good, the doctors will probably order a couple of tests and then, if things still look good, the doctors will clear Hope for breastfeeding!

Hope had no significant events today. Mom and dad are hopeful that we may be almost done with these, as they seem to be gradually diminishing in frequency and severity.

Hope weighed 4,060 grams. This puts her over 4 kilos, which is 8 pounds 15 ounces!!

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, Monday May 25

Another good day for Hope. She spent most of the morning and early afternoon snoozing and saving her energy for playtime this afternoon. Once she woke up she sat and played with mommy and daddy for quite a long time. When she got bored with this she sat in her swing and played until after mommy and daddy had left.

Hope's blood gas was very good this morning. They decided to lower the settings on her ventilator just a bit and Hope tolerated this very well. She didn't have any episodes all day and was able to keep her heart rate and oxygen levels up all day long.

Hope had some special visitors today. Her friends Jody & Peggy Byland stopped by to see Hope. She was so happy to have visitors that she even opened her eyes and woke up from her nap.....for a minute.

Daily Dose, Sunday May 24

DADDY IS BACK!!!

Hope was very happy to see daddy again after 4 days of missing him. He cuddled with her for a couple of hours, and he told her all about his time in Boston. Daddy brought Hope a book about Wally, the Green Monster, and his travels through Red Sox Nation.

Hope also cuddled with mommy, grandpa R and spent some more time hanging out in her swing. She had fewer episodes last night and today. Hopefully these will continue to diminish in frequency and severity.

Daily Dose, Saturday May 23

Hope spent a good bit of the day sleeping and resting. Her bottom is still very sore so she lounged around diaper-less with the oxygen on the tush again. Hopefully since they stopped her antibiotics today things will clear up soon.

Once Hope did wake up, she was ready to play. She hung out with mommy, grandma R and granpda R for a while and then the real excitement started. Her nurse got her a swing to play in for a while. Hope wasn't sure what to make of this new vantage point at first. Her next mission was to figure out how and why she was moving without someone holding her...this was all very new and strange.

Hope weighed in at 3830 grams today - 8 pounds 7 ounces.

Daily Dose, Friday May 22

Hope had a very good day today. She was much more comfortable over night and had fewer episodes throughout the day today. The doctors are happy with this and don't plan to make any changes to her support over the weekend. Hopefully she will have a couple of restful days and then we can look at weaning her down next week.

The only rough part of Hope's day was that her bottom is very sore. We aren't sure if it caused by the cream they are using to treat it or if she is reacting to all of the antibiotics she is on this week but her bottom was very red and sore today. In an attempt to treat it Hope got a mini spa treatment. She lounged around without her diaper on and had oxygen applied directly to her sore bum. Hope likes this treatment and thinks she will have to continue with spa treatments once she leaves the hospital.

Once again Hope had a great weight gain. She was up to 3,810 grams - 8 lbs 6 ounces!