Good morning. No major updates to report from overnight. Her sodium came up. It’s still under the normal range but improving. We await news from rounds. MRI scheduled for 11.

Updates from rounds:

• Olivia will be heading downstairs for an MRI today. Dr. P will give us a preliminary read tonight and a formal one will arrive in a few days.
• They continue to try to work with her kidneys.
• They are modifying her intake and may start protein today.
• GI should be starting to consult today. They are expected to order up a host of tests.
• She’s coming slightly down on her ventilator settings (down = less support = good).

So, it’s a lot of waiting for more tests today. Miss Olivia looks comfortable.

Updates from the evening.

• She received consistent pulmonary treatments today and her lung opened back up to 3/4, which is a big improvement.
• Kidney related test results indicate that she does have SIADH (so, no kidney dysfunction, it’s just getting the wrong signals). After testing and consultation with the kidney specialists and the geneticist, they suspect that the SIADH was caused by her recent lung issues, and it’s likely a one-time issue rather than a more severe, chronic challenge.
• They are bringing in a pediatric GI doc tomorrow to help diagnosis her liver issues.
• Dr. F stopped by to take another look at her. He didn’t have an update, but he expects to have the micro-array results by the end of the week.
• The MRI is rescheduled for tomorrow.
• We’ll likely have a cross-team review of her case towards the end of the week.
• Otherwise, today was a great day for Olivia. She had a fantastic nurse that kept her lungs cleared consistently.
• She is back down to 21% O2 and was awake for a good portion of the day. This was the most we have seen her awake and active since birth.
• She had an hour skin-to-skin time with both mom and dad, too.

Update from the evening.

• She is recovering from the events of this morning. The medication is working and she’s starting to come down on the ventilator settings which is good – near 30% o2. The mucus in her lungs is thinning out and the nurses are able to suction it out. Not a long term solution, but she looks more peaceful now.
• She had a very large bowel movement, which the nurses were very happy with.
• Possible MRI tomorrow.
• Still no word on those liver ultrasounds.

Good evening. Updates from the day.

• Olivia’s second EEG was normal. No more are needed and gear is removed.
• Still continuing with the MRI, but not expecting much.
• Her OT went well, showing improved range. We also learned she can suck – her and Whitney have been playing with the pacifier since.
• She had a transfusion around 2 PM.
• Her respirator is down to 20.
• We had a consultation with Dr. P. She believes Olivia is stable and no longer critical from her birth events. She’s excited about her improvements. The cause of muscular and other development issues are not know – and it’s not likely just a time and development issue, but an underlying cause yet to be determined (e.g. genetics).
• We continue to watch her improvements while waiting for more news. They will attempt coming off the respirator tomorrow.

8:59AM

Good morning. Updates from the evening.

• Olivia is looking a little better in terms of color, but has continued signs of jaundice.
• Breathing continues to improve, her respirator is down to 25/bpm and 21% O2 (down from 35 & 23).
• She was weighed overnight and is now at 5 lbs 14oz, which is up from her birth weight of 5.1lbs. The weight gain however is attributed to her being on fluids and edema (retaining fluids).
• Platelets are slightly up to 80, from 76 yesterday.
• She did well while her legs were propped in a stretched position overnight.

10:23AM

Quick update: Olivia got a surprise visit from Paul Lucas this morning. He flew up this morning (mom and dad didn’t know either). He hasn’t been let in yet due to visiting hours, but baby Olivia looks excited.

11:35AM

Morning update.

• Today is going to focus on steps to get off the ventilator. They dropped her respirator values again and will make an effort to see if they can get her off today or tomorrow. They said the first time might not be successful, but it doesn’t mean she can breathe on her own.
• They are doing another transfusion, as she is more anemic due to a variety of reasons including the amount of blood they were drawing. They are describing this a “maintenance” action (vs corrective).
• They will do another EEG today. A consult with the doctors and Dr. K suggested that they are not expecting much due to how positive her first scan was.
• MRI is expected on Monday.
• OT is coming by around 4 PM today.

9:07AM 

Morning update before rounds:

• Warming started at 4:30AM and will end around 10:30AM.
• She is off insulin as of around 11 PM.
• They increased TPN
• Respiratory rate is back down to 35 and she’s breathing over it still (good – she’s breathing around 55 breaths per minute).
• Platelets are down again this morning (they check them once a day) to 76 they were at 88 yesterday. Coagulation (ability to clot) came down corresponding across the board (a good sign for drop in platelets). Normal for platelets is 160 – 370, however they are not taking action unless under 50. Right now they are viewing the drop as a positive thing.
• Also, update on mom. She is producing well! Making lots of milk. She slept really well last night too. It was good to be in our own bed.

10:47AM 

Morning meeting just came through, and no major changes in the plan.

• Warming continues.
• Neurological tests will likely be tomorrow.
• They are no longer monitoring coagulation (testing if she is clotting) as it looks fine, and it is one extra blood test. They are not concerned about platelet counts despite the drop. They said she had a high count when she arrived so they don’t think it’s genetic.
• No update from genetics.
• Respiratory performance is improving but not yet strong enough for her to come off.
• PICC line is coming in today. Timing TBD.

12:41PM 

• After two more tries, the PICC line is finally in!
• She’s also off the cooling blanket at this point.
• She’s taking a little snooze now as she’s had a big morning.

7:43PM 

Not many evening updates.

• They removed one of the umbilical lines (UVL) since she has the PICC.
• She looks tired from a long day of poking. She is sleeping.
• Nothing planned for tonight other than snoozing.