The Terrible, Horrible, No Good, Very Bad Day

by Kayte

What was supposed to be a routine post-op for Brody’s knee surgery turned into an ultrasound at the hospital and a trip to the cardiologist for blood clots in his calf. The doctor put him on two types of blood thinners to dissolve the clots. We spent about 8 hours in doctor’s offices today. Barely saw Max and didn’t even visit Lola. This is seriously not what we need right now.

Max is fine. No drama.

Lola had her follow-up eye exam. She will have laser surgery tomorrow. It’s pretty minor compared to what she would have needed a couple months ago, but it will probably set back her discharge by a few days.


Car Seats

by Kayte

UCLA told us to start getting ready…

Installed them in my car today and ran them over to the fire department to have them checked out. Apparently it’s just a rumor that the LAFD checks carseats, but they were very helpful anyway. Not quite sure why it took four firemen for two car seats…but everything appears to be secure.

Neurosurgery removed the dressing on Lola’s head. She’s just got a few little steri-strips holding it all together. At this point every side of her head has been shaved and is growing back at different intervals. Need to figure out what to do with that style… A different set of surgeons came and removed the broviac IV from her chest. She seems pretty well recovered from surgery, though still a little uncomfortable. Not sure if it’s pain or gassy-ness. Breastfed twice. Spent some time visiting with her night shift primary.

Max is out of MRSA quarantine – yay! They finally removed his yellow tape and contact precautions. Wiped everything down with anti-bacterial wipes and we’re good to go. Took a good bottle last night (40ccs) and an okay one today (15ccs). Getting lots of love from the nurses. Poops smell WAY “better” now that he’s off the fortifier. Pretty low drama, just waiting on his nippling.


Stripes

by Kayte


Due Date

by Kayte

Today was Max & Lola’s official due date. For the first couple years their age will be adjusted to today for developmental milestones. Technically they’re already three months old, but developmentally they’re just newborns.

Brody bravely ventured out of the house to visit with Lola. When we saw her this morning she was still intubated but much more alert. They extubated her around 5pm and she is doing great on the Vapotherm at 3LPM and 21% oxygen. They started nipple feeding again tonight. The initial results on her CSF culture came back negative so we aren’t worried about any lingering meningitis. Her fontanelles were much softer and head circumference is down a whole centimeter – the shunt is doing its job. They are getting some weird reads on her hematocrit (blood volume). After her blood transfusion (pre-surgery) the crit was 38 (good) post-surgery it was 35 (fine) and this morning it was 28 (low). It’s not a high blood-loss surgery so they’re not quite sure why they’re getting such a low reading. They don’t see any signs of internal blooding. They said it could be dilution in the bloodstream since she’s getting TPN through her IV. So far she’s asymptomatic so they’ll just keep an eye on it.

Max’s third MRSA culture came back negative – we’re out of quarantine! Or we will be tomorrow when the doctor gives the order. It will be so nice to not have to worry about passing it between the two kids. He had a bunch of his meds DC’d (discontinued) – pulmicort (breathing steroid), prevacid (antacid) and best of all the HMF (human milk fortifier) that’s been causing his toxic diapers. He’s up to 77cc feedings (2-1/2 ounces) by gavage (tube). His last few nipple feeds haven’t been great (10-15ccs) but hopefully it’s going to “click” soon.

Brody’s hospital excursion wore him out pretty good. He spent the afternoon with leg elevated watching Olympics (nice timing). Now that the anesthesia has completely worn off he is in a lot more pain. He’s getting around on his crutches better and figuring out ways to carry things around the house. Ever resourceful.


Post-Op

by Kayte

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Recovery

by Kayte

Both post-op patients are still knocked out. Lola’s been wiped since the surgery and still intubated – sounds like they’ll wait until tomorrow when she’s more awake. Brody groggy and sleeping since I brought him home. I think it’s time for me to join them!

Had a nice, cuddly visit with Max. Second MRSA culture came back normal – one more and we’re in the clear. His repeat eye culture also came back negative – no more eye infection. Still doing great on the low-flow nasal cannula. Only took a 15cc bottle during day shift. Getting his two-month vaccines.


Dualing Surgeries

by Kayte

What a crazy morning. Woke up at 4:00 and on the road by 5:15. Dropped Brody off at St. John’s an hour early at 5:45 and rushed to UCLA in case they actually took her down on time. Lola was scheduled for 7:30 and Brody was scheduled for 8:15. Of course both surgeries were late. Got to hang out with Lola and hold her for an hour. Finally took her down at 8:15 and Brody went in at 9:00. They were both finished around 10:00. Quickly saw Lola when she came back up before I ran back over to pick up Brody.

Both surgeries went well and both patients are sleeping. Lola is intubated for the time being – they’ll work on getting that breathing tube out over the next day. Brody is pretty groggy and still figuring out the crutches. It’s going to be a long six weeks.

Eating lunch and pumping now. Maybe a shower? Then off to visit Max. More later.


Low Flow

by Kayte

Max took a 30cc bottle last night and another 28cc bottle this morning (~1oz each). His most consistent feeds yet! They switched him from the hi-flow support today and put him on low flow (.25LPM) at 100% oxygen. It’s the same setup he could possibly go home on. So far, so good! He didn’t have a single episode while I was there today, which is better than usual. His first MRSA culture came back negative – now he just needs two more to be released from quarantine. We did some non-nutritive sucking today. His suck is strong, but he didn’t do any real feeding. Just kind of played around down there 🙂 Such a boy.

Lola’s pre-op labs showed low blood volume so she got another transfusion today. It will give her an extra boost going into surgery. Doing well feeding ad-lib. She’s been sleeping longer (~4 hours) and eating more (~60ccs/2oz) at a time. Head circumference is large. We compared her with Max today and her head is 3cm bigger around but her body is 2.5 pounds lighter. Just shows you how much she really needs this shunt. Found out that she’s first case on the OR schedule tomorrow which means morning, not afternoon. She goes under at 7:30am and Brody is at 8:30am. Crazy morning. Send lots of good thoughts our way!


CPR

by Kayte

Brody and I took a CPR class at UCLA today. They went over resuscitation and choking. 30 compressions, 2 breaths. Repeat. Let’s hope we never have to put it into practice…

Chunky Max hit 8 pounds today and the doctors put him on a diet. He was gaining weight too fast (~2 ounces per day, they want him at ~1 ounce per day) so they’re restricting his total fluid intake. He’s also outgrown his newborn diapers (size 0) but all they have is size 3 which come up to his armpits. With the huge poops he’s having he definitely needs the bigger size to contain it all!

Lola is on ad-lib feeds which means they’ll feed her whenever she wakes up hungry, rather than on a three-hour schedule. That way she can get more sleep if she wants it, and/or more food. Still on room air and so far doing well with the feeds. Just hanging out until the big surgery on Friday.

[Edit] Max isn’t really tubeless – still needs air tube and food tube. We were changing his dressing so the nurse let me get a few quick pictures before the hardware went back on.


Loud Mouth

by Kayte

The video isn’t great, but the audio is. Music to my ears…


Back in the Saddle

by Kayte

Feeling better today and able to go visit with my lovebugs.

Max drank a 35cc bottle! The nurse was so excited. At least we know he can do it – now it’s all about consistency. He’s eating a total of 72ccs every 3 hours which is about 2.5 ounces. Weight is up to 7lb 14oz despite huge diaper blowouts (they’re ordering him the next size bigger). He’ll be getting his 2 month vaccines over the next few days.

Lola is up to 5lb 6oz and eating 45ccs every 3 hours (1.5 ounces). Her follow-up eye exam showed improvement. No surgery yet and will follow up again next week. They put her back on room air to see how she’ll do with feedings – trying not to send her home on oxygen. Her shunt surgery is actually scheduled for Friday, not Thursday (some weird confusion). That’s a bit of an issue as Brody is having knee surgery on Friday…but we’ll figure it out.


Better Safe Than Sorry

by Brody

Woke up with a sore throat today and decided not to go to the hospitals. Managed to get into the doctor but they said tonsils look good and strep swab was negative. Maybe just finally wearing thin. Took advantage of the situation to get some stuff done around the house while Brody held down the fort at the hospitals.

Max is having some bigger desats lately. He drank 16ccs out of a bottle. Took awhile but he finally got it down. You would have thought he had run a marathon after he was so tired. He was wide awake and enjoying his mobile. He’s on day 8 of 10 of antibiotics. Eyes are clear. They’ll do another culture Wednesday to see if the MRSA has been suppressed. His poopy diapers have been toxic lately – a side effect of the fortifier.

Lola’s last day of antibiotics were yesterday. Since she’s getting less overall fluids they were able to increase her feeds to 45ccs. Decreased her caffeine and increased all of her other meds/supplements. Follow-up eye exam tomorrow. Been taking all her feeds PO (oral) and hasn’t had the feeding tube in her nose for two days now. Shunt still scheduled for Thursday.

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Pacified

by Kayte

Had nice visits with both the beebs today. They were super awake and alert. Lola seems to be looking at us more. She’s doing great with her feeds now that she’s back on the nasal cannula. Shunt is officially scheduled for Thursday, and they’ll move it up if a slot opens in the OR. Max took a 17cc bottle which is one of his best. Still having some pretty big desats but hanging in there.
 


Matching PJs

by Kayte

Too weird – yesterday the nurse at St. Joe had dressed Max in his cute footie PJs and today I walked into UCLA to find Lola wearing hers too. They’re the same sized outfits so you can sort of see the size difference between Mr. Chunk and Ms. Petite. Thanks Auntie Karen!

 

As you can see, Lola is back on the nasal cannula. Although she was doing great with the breathing, her nippling had plummeted. Turns out she’s only ready to do one at a time. Since they can send her home on oxygen, they want to focus on the bottle feedings. Max had one episode last night where they had to bag him (the first in a couple weeks) but was fine all day today at 3LPM and 30% oxygen.


All Clear

by Kayte

Results from Lola’s LP (lumbar puncture) are already in – all clear! The white blood cell count was good, showing no signs of the infection/meningitis. Yay! That means she’s good to have her shunt placed. They’re trying to schedule her for early next week – possibly Monday. Still doing well on room air and feeds. Weight 5lb 2oz, though the nurses think a lot of that is the fluid buildup in her head. She’s been a little more irritable and lethargic the past couple days. The nurses think it’s pressure building in the brain and a massive headache. Glad that will be taken care of soon.

Max is 7lb 6oz and taking his time. Breathing is definitely getting better – currently at 3LPM 30% oxygen. Feeds are anywhere from 5ccs to 19ccs. Super awake and alert – tracks you with his eyes and responds to your voice. Very interactive and cuddly.


3 Months

by Kayte

3 months. 13 weeks. 91 days.

Happy birthday Max & Lola!


Room Air

by Kayte

Someone’s breathing like a big girl…


CT Scan

by Kayte

We got the final word from neurosurgery today – Lola needs a shunt. They took her down for a CT scan this morning to get a better picture. In addition to the growing head circumference, the CT scan showed “an obstruction at the foramen of monro” which is preventing the CSF from passing. They’re going to do an LP on Friday to get clearance on the meningitis with possible shunt surgery on Monday. Not sure what they’ll do if they can’t clear the meningitis…

Other than that Lola’s doing really well. They put her on a home oxygen setup which is just a low-flow nasal cannula hooked up to a standard oxygen tank. She was doing great and even seemed to like it better than the hi-flow Vapotherm. Not sure if she will come home on oxygen or not. She’s POing (taking orally) anywhere from 75-90% of her feeds, including breastfeeding once per day.

Max is still doing well in his quarantine corner. We asked a lot of questions about the MRSA today and can’t say we really understand it. MRSA is a colonization of staph that 25-30% of people carry around with them. It’s usually not an issue unless someone has a compromised immune system. It’s colonized in Max’s nose (which is where it lives on everyone) and he’s not really sick from it. The antibiotics are just trying to suppress it and may possibly lead to a negative culture in a couple weeks, but there’s a good chance it would just come back after. He’s on quarantine to protect the other babies with weaker immune systems, not out of concern for him. They said there’s a good chance that it will (or already has) colonized on myself and Brody, which would seem that Lola is next in line, but nobody seems overly concerned? ID (infectious disease) is quite a complex department…


Bleph

by Kayte

Lola had her follow-up ROP eye exam today and they said it looks much better. The veins are less tortured and her ridgeline has moved into Zone 3. They’ll give it a couple more weeks (until full term/40 weeks) to see if she needs surgery, but even if she does it will be much more minor than before. She got her two-month vaccinations today. Still haven’t heard from neurosurgery regarding the shunt. Also noticed part of a stitch left in from her previous surgery which they’re supposed to come and remove. Lola got some play time in her own swing today, but no pictures.

Max was moved to a corner space with a window view last night. They want to keep him away from the other babies due the MRSA contact precautions. We were anxious, but the staff helped us feel better about it. The culture from his nose also came back positive for MRSA. In addition to the sulfacetamide (bleph) eyedrops he will also be getting a topical antibiotic that will be swabbed inside his nose. We gave him a bubble bath and he absolutely loved being in the tub with the warm water.


MRSA

by Kayte

Great…so Max’s little eye goop culture from the other day grew into MRSA (methicillin-resistant staphylococcus aureus). It’s a staph infection (which we knew) that is resistant to common antibiotics (ampicillin, penicillin, etc.). He’s on antibiotic eye drops which are already covering the MRSA. They also cultured his nose to make sure it hasn’t spread. This particular infection is “contact” which means it’s spread by touch (not airborne). That being said, he’s not exactly quarantined, but he is on lockdown. They moved him to a corner of the NICU away from the other babies. The nurses and doctors have to wear gloves and gowns when they work with him. We also have to be super careful with Lola. Luckily St. Joe called right before I walked into UCLA today. I had to strip all of my contaminated clothes, wash my neck/chest/arms and wear a hospital gown. They also did a nose culture on her to make sure she hasn’t caught it, though the meningitis antibiotics that she’s already on also cover MRSA.

Lola’s head ultrasound came back looking worse – ventricles are more enlarged. Between that and the increasing head circumference we may be heading back into shunt territory. Neurosurgery is supposed to come assess in the next day or so. All-in-all not the best day…though certainly far from the worst.