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.
Good morning. No major updates to report this morning before rounds. Olivia slept well through the night and was really excited to see mom this morning. Her ventilator is on 36% o2. We’ll see what the plan holds for today. If she remains stable, we should have some more time skin-to-skin with mommy. More updates after rounds.
Updates following rounds:
The team is now looking into her kidneys, as test showed a drastic (and sudden) decrease in sodium. A pediatric renal specialist, Dr. R, will now be working with Olivia today. They suspect SI ADH (potentially an acute case resulting from the lung collapses, or a more severe scenario from her brain) or renal wasting (a kidney disfunction). Testing is ongoing and we expect updates today.
Her liver ultrasound was normal. They did not see blockage, but did see some sludge in her gallbladder. Tests continue around the liver concerns as well.
Updates about both her liver and kidney symptoms have been sent on to the geneticist, Dr. F. We may expect a visit from him today or tomorrow – but likely not results.
Her left lung was completely collapsed in yesterday’s X-rays. A positioning change seems to have opened it up. They are calling this “roving atelectasis”, which means her lungs struggle based on “mechanical” things like position and mucus plugging. They may decide to do a full suction on her lungs depending on progress in coming days, but that has not yet been ordered. In the meantime, nurses continue to suction her tube as needed. Her next x-ray is scheduled at 4 PM.
The MRI is postponed, due to all these events.
The continued issues are concerning but may get us closer to understanding her underlying condition(s). Mom and dad are still positive. She continues to receive top tier care and attention.
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.
She’s trying out a new position this morning, lying on her stomach.
She had a very active night and early morning. Her left lung was looking collapsed from overnight X-rays. They started her on Albuterol, which should help open her lungs. They also started Dornase to help with the secretions, which were high yesterday. This morning X-rays showed improvements, but pulmonary is still the primary concern for today. The team also noticed yellow secretions from the lungs, which is a possible sign of infection. They ordered blood tests – complete blood count (CBC) – that let’s us look for signs of infection via white blood cells. Those came back negative. They also ordered a C Reactive Protein (CRP), which was high (8) but not enough for concern. Her oxygen saturation levels are low – due to all the mucus plugs – so she is up to 46% O2. They are going to move her breathing tube up a little. They may due a few more techniques to attempt to clear her lungs.
Feeding has stopped, as they want to treat pulmonary first.
TBD on the results from the liver ultrasound. Other tests of her liver were OK.
She is off the phototherapy. Her indirect bilirubin count has come down, however her direct levels continue to rise which is concerning.
Good morning! Olivia slept well overnight and they moved her back into a flat position. They started phototherapy at 8 AM to treat her jaundice. Her bilirubin is at 18 and her light level is 17. This morning we await updates on her right lung (following an x-ray), the status of her UA line (max they can keep it in is tomorrow), and the start of feeding (projected for the today and may help bring down the bilirubin level).
Update from rounds.
First series of genetics test came back all normal. This rules out Turner’s Syndrome and a number of other major genetic disorders. We await the micro-array results, which will reveal more acute syndromes. That may take a few weeks.
The UA is slated to come out today. After it comes out, Mom will be able to hold her for the first time. Feeding starts today as well.
Test results show that her direct bilirubin is very high now as opposed to her indirect bilirubin. This indicates that it there could be an issue with her liver, which is more common in babies with possible birth disorders. They will do an ultrasound to assess the structure of her liver. They were examined at birth and deemed “normal” but we’ll revisit it now given the high levels. Phototherapy may stop today, since it’s used to treat rises in indirect bilirubin (not direct).
Her right lung continues to be problematic. Morning X-rays showed improvements, however light pressure on that side caused stress for her this morning.
Pictures coming soon but mom got to hold her for an hour today skin to skin! It took her a minute to get settled but she did great. Dad fed her some of mom’s milk (via a tube) during the process. They both took a little snooze. Olivia was comfortable and peaceful throughout the process. It was awesome.
Update from the day. The highlight was about an hour of skin-to-skin time with mom. Mom and baby had a blast. She was fed 6 MLs of breastmilk but was only able to digest 3. They attempted another 6, but it was unsuccessful. They removed 9 MLs from her stomach and will try feeding again at 9:30 PM. If that doesn’t go well they will continue to decrease the amount given. Her UA is out, so one less line. Ultrasound on her liver happened around 4 PM, we await results.
Good morning. No major morning updates. They gave her a diuretic yesterday to help with all the extra fluids she got from the transfusion – it worked and she came down 180 grams. Bilirubin is high, which is expected given the birth trauma, and she may undergo UV treatment tomorrow. Otherwise, all looks well. She looked liked she had a good night’s sleep.
Morning update! She’s going to try coming off the ventilator today. This should happen this morning. Feeding from mom could start this evening if it goes well. MRI will be Sunday at the earliest, as they want to see how her respiratory changes go first. Her arterial line may come out tonight, also depending on respiratory progress. We continue to monitor bilirubin levels, but there is no treatment planned yet (intentionally). Dr. S and P will be in this Saturday to check on her. Everything else looks good.
An update: removing the respirator was unsuccessful and Olivia is back on the ventilator. They tried a few different methods, but ultimately she was exerting too much energy to maintain the necessary lung expansion. The good thing is she knew to breathe. She was off for about an hour total. We heard the faintest hint of her voice in the process. She is now sedated and sleeping. They will try again next week (date TBD). In lieu of today’s respiratory “failure” the team will focus on feeding as her next goal. Olivia got a visit today from Troy Lichten, who stopped by to say hi on his birthday.
Good evening. No major updates to report tonight. She awoke from sedation and was alert for a little before going back to sleep. She did make an effort to pee on mom. X-rays still showed her right lung as partially collapsed (something noted before). She is propped on her left to alleviate pressure on the right lung tonight. OT didn’t happen today due to the difficulties she had with the respirator. Feeding is on the docket for tomorrow, along with a visit from the Guerrero clan.
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.
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.
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.
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.
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.
Morning meeting just came through, and no major changes in the plan.
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.
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.
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.