Daily Dose, Wednesday June 10

Hope had a great day with lots of cuddling (as you can see). She cuddled with mommy, Grandma R, Grandpa R and daddy might have snuck in a kiss and a snuggle or two.

Hope got a new type of trach tube. This one has a flexible neck which allows the ventilator tubing to be away from her face. She is much more comfortable with this tubing and can move around without getting caught up as easily in the tubing.

Hope is still putting on the weight. Today she weighed in at 4,500 grams - 9 pounds 14 ounces! Before we know it Hope will be over 10 pounds!!!

Daily Dose, Sunday June 7

Happy 6 Month Birthday Hope!!!

It's hard to believe but Hope is 6 months old today! She spent the day checking out the view from different angles in her bed, her nurse turned her around in her bed so she could see the room. Daddy and Mommy both spent lots of time loving on Hope today. Grandpa and Grandma Robinson also visited Hope to wish her a very happy birthday.

Daily Dose, Friday June 5

Hope settled into her new surroundings a little more today. She got out of bed to play with Jason her physical therapist. Overall, Jason was pleased with how Hope was doing.

On the possibility that Hope's brady and desat "events" are being caused by mild seizure activity the doctors decided to start her on a regimine of phenobarbital. The EEGs that Hope has had showed that she is at risk for seizures but no actual seizure activity, however, the EEGs were only run for 20-30 minutes at a time and it's possible that Hope just didn't have any seizure activity during that time.

Hope got goood cuddle time in with mommy and daddy. Hope is allowed to have more toys at her new hospital which makes her very happy - she spends lots of time watching her new ladybug mobile!

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!