Daily Dose: Friday, July 10

Hope had a good day today. The number of her desats is dropping - the nurse today had a different template on the monitor so Mommy & Daddy did not get an accurate count.

Hope was really agitated for a couple of hours last night so the doctors decided to increase the frequency of her valium. Hopefully this goes well.

Mommy & Daddy finallyhad a family conference with the doctors, social worker and the discharge coordinator. Now, it seems like a plan is forming as to how to proceed from here to home. Still at least a month away...

Hope is doing well with her feedings too, but hasn't been gaining weight this past week. Mommy & Daddy were able to get the doctors to resume the nutritional fortification and we will see how that works.

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: Wednesday, July 8

Hope had a rough night last night and her morning was a bit rough as well. Yesterday, the doctors weaned Hope's ventilator settings down quite a bit even though Hope had an increased number of desats. The wean apparently went too far for Hope's pleasure because she had 50 events between 8pm last night when Mommy & Daddy left and 10am today when her ventilatory support was raised- 50 events is the amount that the computer can store. After her settings were raised, Hope did much better, but still had a few events because her respiratory reserves weren't quite caught up.

Hope was much more pleasant and far less agitated today. She had a very very large #2 (poop) last night that made her much more comfortable.

As you can see from the picture, Hope is still getting the "glove" treatment, and no one is very happy about it.

Daily Dose: Tuesday, July 7

Happy 7th Month Birthday Hope!!!!

Other than the usual birthday celebration, Hope had an okay day. She was a bit restless and agitated most of the day, which ended up being caused by some constipation since she hadn't pooped all day long!!! I personally can't blame her for being uncomfortable. The doctors are still very happy with her blood gasses and how they are progressing so they weaned down her ventilator support a little bit more today. We pray she will continue to do well with this weaning practice.

Daily Dose: Monday, July 6

Hope had another great day today. She has been weaned down on her ventilator settings again and seems to be tolerating it well so far.

Hope only got one dose of tylenol last night and one dose today but seems to be feeling better. She doesn't appear to be in much pain anymore which is GREAT!!!

Daily Dose: Sunday, July 5

Today was a good day for Hope. She continues to do marvelously after her surgery. She has gone from having roughly 40-50 alarms- a portion of which are true "events", a fewer portion are "significant events" and even few cause any big concern or uproar- to having................ (insert drumroll here)................................... 5 events!!!!! This is great progress! There is a possibility that these have been reduced due to the sedation Hope was on following her surgery since this also happened after Hope's tracheostomy, but as she continued to recover from that surgery they gradually increased. We hope that these have honestly improved, not just because of her sedation, and we will update this number every day from now on.

Hope was very excited to be able to wear clothes again. As you can see, she is wearing a floral number from the Hope Collection.

Daily Dose: Saturday, July 4th

Happy 4th of July Everyone!!!!

Hope had a great day today- she is recovering very well from her surgery. She should be back to full feeds by midnight, which means her IV can be taken out!! Hope has had a few excellent blood gasses so the doctors will likely continue to wean on her support tonight.

Hope is also weaning off her morphine so she is now getting Tylenol for her pain. This means that Hope was more awake and interactive today. While she is interactive, she is still a little moody, she is most likely thinking: "This may not hurt right now, but I'm still PISSED."

As you can see, Hope was very patriotic today. Her new patriotic bow is courtesy of Nurse Emily, one of Hope's favorites. It looked very cute but as you can see from the first picture, it also was very tasty.

We are all hoping tomorrow goes as well as today.

Daily Dose: Friday, July 3

Hope has been quite the trooper after her surgery. Unfortunately she is in pain, but the nurses are trying to minimize that, so Hope spent the last 24 hours in a morphine induced sleep.

The doctors think that Hope is progressing well. She has resumed her feeds already and is doing well with them. If anything, she seems to be ahead of the curve with her recovery. Hopefully she will work up to full feeds by tomorrow or Sunday night.

You can see in the picture Hope's little surgery scars. The horizontal one on the bottom is from her reconnection surgery. Then the vertical one in the middle is from the last surgery. Even with the scars and bandages she is still the cutest little girl I have ever seen.

Surgery Update

Just wanted to give everyone a quick update... Hope's surgery went well yesterday. She tolerated the anesthesia and surgery well. They finished up around 8:00pm and Hope was settled back into her bed by 8:30. As of 10:30 last night the anesthesia had started to wear off and she was starting to act a bit uncomfortable. Her nurse gave her a dose of morphine and a dose of valium. Once she settled down, she slept well through the night. Her blood gasses are looking very good and she wasn't on any additional oxygen as of this morning.

Thank you to everyone for all the warm thoughts and prayers. We are all so relieved that she did so well.

Daily Dose: Thursday, July 1

Hope is prepared and ready to go for surgery tomorrow. She is tentatively on the schedule for 2pm but if emergencies (other surgeries) come up she may get bumped later in the day or even to Friday morning. Hope spend all day getting ready for her surgery. She took a long soak in the tub. Hope won't be able to take a bath for 10 days (ewwwww) or so after the surgery, but once she is all healed up and her incision looks good she'll be back to splashing around just like the does now.

As of last night Hope was up to 10 pounds 13 ounces!!!! She is getting closer and closer to 11 pounds!

As you can see, Hope is still maintaining her fashion sense. She is modeling a new ensemble from the Hope Collection. *Note the matching socks.

Hope has had lots of visitors in the last week and wants to thank everyone that has come to visit her: Nancy Vardon, Judy Convertini, Caitlin Zinnecker, Joyce Carlson and Pastor Ruth. She loves seeing all of these people who care so much about her!!