UCLA NICU Reunion 2016

by Kayte

Today we took the kids to their second NICU reunion of 2016, this time at UCLA. It was kid heaven: bounce houses, a petting zoo, police car, ambulance, cotton candy, ice cream, a candy store and more. They ran around and had a blast. Unfortunately we didn’t see many people we knew except our favorite RT; one of our primary nurses moved out of state, the other was planning her wedding, and a lot of the other nurses don’t work at UCLA anymore. So it didn’t feel as personal this time around, but we still had some fun.

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Go Bruins!

 

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A Second Opinion

by Kayte

Tomorrow’s surgery has been cancelled.

After last week’s diagnosis left us feeling a bit unsettled, we raced around trying to get into another neurosurgeon for a second opinion. The holiday didn’t help matters, but luckily our pediatrician is ah-mazing and got us an appointment at Children’s Hospital Los Angeles today. Just in the nick of time.

We spent a long time talking things over with the neurosurgeon at CHLA. In the end, he offered a different approach than what UCLA is suggesting. We cancelled tomorrow’s surgery to give ourselves time to think. We have a couple days to weigh our options, but next week will bring one surgery or the other.


Eye Exam

by Kayte

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We found ourselves back at UCLA today for Max & Lola’s 6-month eye exam. We got good reports. They are still far-sighted, which is normal at this age and should improve. No glasses for either one (yet).

Lola still has an astigmatism, which is only a concern if the two eyes vary enough to cause overcompensation (they don’t). Lola’s retina and optic nerve also looked good – the laser surgery appears to be a complete success!

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Brain MRI

by Kayte

The earliest we were able to schedule Lola’s MRI was May 30th, but UCLA called earlier this week to let us know they had a cancellation and could get her in this Thursday. It was perfect since Aunt Karen was in town and could look after Max (who wasn’t allowed to go).

An MRI is a little complicated with a baby. They have to hold perfectly still for nearly an hour to get a good image, so sedation was necessary. We’ve never had Lola sedated without surgery, so we weren’t sure what to expect, but it was relatively easy. She woke up, ate and we were out of there 30min after the test finished. When we got back home she was completely recovered – no lingering drowsiness or side-effects.

Now more waiting for a doctor to call us with the results.

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Bedside Manner

by Kayte

I guess we should be used to it by now, but communication with doctors is one of the most frustrating things ever. I guess because the issues at hand are so important to the patient, but a blip on the radar to them. Or not even on the radar.

So last Wednesday we went in for a head ultrasound to make sure Lola’s new shunt is working properly. They were supposed to have the results on Thursday and get back to us. I called Thursday and left a message. No call back. I called Friday and left a message. The receptionist called back and said the doctor would look at it and call us no later than Monday. We heard nothing on Monday. I called Tuesday and left a message. The receptionist called back and left a voicemail saying that the doctor wanted to do another head ultrasound. No explanation.

Ummm, what!? We freaked out thinking that something is wrong. Of course it’s after 4pm and the office is closed for the day. My sleep is filled with nightmares about chasing elusive phantom neurosurgeons around the halls of UCLA and Lola going back for surgery.

First thing Wednesday morning we call yet again, Brody gives the receptionist hell and the head neurosurgeon is on the phone in less than a minute. He assures us nothing is wrong, but explains that they need to do a second ultrasound so they can compare it with the first. He said the last ultrasound they have is from August when she was in the NICU. This is kind of annoying since we just did an ultrasound in February pre-op, but for whatever reason they don’t have it in the system.

So long story short we’re going back to UCLA tomorrow for another head ultrasound and at some nebulous point in the future we may or may not know that Lola’s surgery was a success and her shunt is working properly. Fun stuff.


Second Home

by Kayte

We spend way too much time at UCLA for medical-related stuff. Today we had two appointments for two different kids. In the morning Lola had her neurosurgery follow up. A quick visual check showed that she looked good. We’ve still been having some issues with fussiness and not eating great, so the doctor ordered a head ultrasound.  It will tell us for sure whether her symptoms are neurological or pediatric (i.e. teething) and give us peace of mind.

Since we had a four hour break between appointments I tried to get the head ultrasound scheduled while we were there, but no luck. Now we have to drive back to UCLA again tomorrow for yet another visit. Between doctors and therapy, that makes 7 appointments in 4 days.

In the afternoon we took Max to see a pediatric surgeon about his hemangioma. At our last pediatrician appointment we noticed that the veins on his right shoulder (around his hemangioma) were more pronounced than on the left. That was also the day we found out about Lola’s head so this sort of got pushed to the back burner. Sometimes the hemangioma can pull too much blood and one arm will grow more than the other. The pediatric surgeon wasn’t really worried. He said the blood could be re-routing and causing the more pronounced veins closer to the surface, or that the veins just developed differently. Either way he said to keep an eye on it and come back if it gets worse.


Croup

by Kayte

So pretty much the LAST thing we needed this week was to spend a night in the ER…but like they say, when it rains it pours.

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Max woke up from his nap around 6:30pm an entirely different baby. Rapid breathing, wet cough, pulling at the rib cage, hoarse/raspy voice, snotty nose. No temperature. I phoned the pediatrician on call and waited an hour for a call back. After hearing Max’s symptoms, and given his history, she told us to go to the ER. At 8pm we were off to UCLA for a second time today.

We got through triage and admissions pretty quickly, then sat for a couple hours in the lobby waiting for a bed to open up. Once Max got into a room things moved along. We were seen by two nurses, a doctor, a respiratory therapist and the pediatrics fellow. The diagnosis: croup.

Max got an albuterol breathing treatment, low-flow O2 support, an oral steroid called Decadron and a racemic epi breathing treatment. After another two hours of observation, and vast improvement, they finally released us at 4am. We have to keep an eye on him the next few day and take him to a ped for a follow up. Oh, AND make sure he doesn’t infect his sister so she’s healthy enough to have her surgery on Friday.

Ugh this is already a long week and it’s only Monday…well, technically Tuesday now. *yawn*


Shunt Revision

by Kayte

20130208-160212.jpgIt’s what we feared. Lola’s shunt is malfunctioning and she needs surgery to fix it. It’s called a shunt revision and happens to about 30% of shuntees, but is much more common in babies than older kids. Luckily we caught it early enough so it’s not urgent and hasn’t caused any damage. Surgery is scheduled for next Friday at UCLA. We’ll be in the PICU (pediatrics ICU) post-op for 2-3 days.

They don’t know exactly what is wrong. The shunt is made up of two pieces – a catheter that goes through the skull into the ventricle and a tube that attaches to the catheter and drains down into her abdomen. Either one could be clogged or kinked. During surgery they will test each piece to see which needs to be replaced. Sometimes the testing/flushing of the equipment fixes the problem and they don’t have to replace anything.

The doctor said most likely it is a biological (not mechanical) failure. Meaning, tissue and cells have grown in the catheter/tube and blocked the flow. Almost like a transplant rejection. After the first revision, sometimes a second revision is necessary. And then a third, and then a fourth. Luckily, each revision is much less likely than the one prior. Almost like the body gets used to having the hardware there and stops rejecting it.

In the meantime we’ve got plenty to keep us busy. Insurance pre-authorization. Lab work. Physical pre-op release. Consent forms. Plus the routine therapy and doctor appointments (we needn’t limit our activity). I also need to figure out what to do with Max next weekend. Not sure if Lola will have her own room in the PICU and we can all just stay there the whole time? Is it worth the risk of exposing him to hospital germs? We have a week to figure it out and get it all together.


Head Circumference

by Kayte

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We’ve had only good news for so long now I’m not sure if I remember how to do this…

We went to the pediatrician today for a routine wellness checkup. The doctor measured Lola’s head circumference and determined that it had grown too much over the last month. Her head was holding steady in the 75th percentile, but today (at 47.5cm) it jumped off the chart completely.

The pediatrician called our neurosurgeon at UCLA right away. Because Lola’s fontanelle is still soft, the neurosurgeon didn’t think it was an emergency situation. We scheduled an office visit with him next Tuesday. We’re getting a head ultrasound done tomorrow. The neurosurgeon will look at the results before Tuesday and hopefully be able to tell us more.

In the meantime, I’m just trying to keep calm until we have more information.


Cardiologist

by Kayte

We visited UCLA today for an appointment with the pediatric cardiologist as a routine follow-up for Max’s PDA ligation. The doctor said everything looked and sounded good (no murmur) on the surface-level. He also ordered an echo-cardiogram to get a more detailed view. If everything appears normal, we should be able to close the book on that chapter.

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The echo-cardiogram was hard for me. Seeing my baby laid out on a white sheet (passed out sleeping!) and watching the monitor gave me hospital flashbacks. While Max & Lola were in NICU it was easy to think of them as components; brain, heart, lungs, intestines… Now that they’re home they are my sweet, perfect little babies. I don’t want to see or think about their inner-workings, or the things could go wrong with them :/ The echo-cardiogram also looks very similar to a pregnancy ultrasound which brought back memories of our carefree, optimistic days… I guess our experience of the whole thing will always be colored a little differently than most.

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On a happier note we stopped by 5NICU and visited some of our favorite nurses and RTs! Max & Lola were both wide awake so they got to be held and cuddled. It was fun seeing everyone have such a happy moment. Max is quite the ham. This is the second time he’s put on a show for a group of people (girls?); smiling, smiling, laughing, laughing. I’m glad they’re such happy babies!


Home Oxygen

by Kayte

Ugh! I do not have time for inefficiencies in my life right now. (especially other people’s inefficiencies) Sat around all day waiting for the medical company to deliver Lola’s home oxygen machine and nebulizer. They were supposed to come between 9 and 12 so I planned my whole day around that, only to have them not show up until 6:30pm. LAME! Only visited Max for about 15 minutes and didn’t get to UCLA at all…BUT we’re one step closer to not having to drive there anymore!

Good news is Lola’s follow-up eye exam went great. The laser surgery did it’s job and she’s good to go. Nuerosurgery also signed off on her head ultrasound. Going early tomorrow morning to get the final verdict from the neonatalogist…

In a surprise efficiency Brody managed to get into both the orthopedic surgeon and cardiologist in less than an hour – no waiting! They’re happy with how his knee is progressing – want him to keep on the motion machine and start weaning off the pain meds. His blood was a little thinner than they’d like so we’re backing off on the blood thinner medication for a couple days.


911

by Kayte

After I blogged last night that Brody’s pain was worse than ever, it just kept getting worse, and worse, and worse. Despite generous doses of Percocet, he was having muscle spasms, chills, hot flashes, dizziness and couldn’t move his left leg a millimeter without excruciating pain. It finally got to the point where I called the paramedics to take him to the hospital. They couldn’t fit a stretcher down our hallway and had to carry him outside slung in the bedsheet. When they lifted him up his left leg extended and popped, relieving a tiny bit of the pain and allowing him to at least align his leg straight.

At the hospital they started an IV and gave him more pain medication. It took three hefty doses before he started feeling any relief, and that was more drowsiness than lack of pain. They did a repeat ultrasound on his calf to check the blood clots. Thankfully they had gotten no worse. The tech did find a large fluid buildup (4cm x 7cm) above his kneecap. They suspect that was the “pop” Brody heard earlier and had been causing his kneecap to drift out of joint. Luckily the orthopedic surgeon who performed the surgery was working at St. Joe today. He was able to aspirate about an ounce of fluid from Brody’s knee to help relieve some of the pressure. They sent us home with a prescription for Oxycontin to manage the pain.

While the whole experience was terrible, I am a bit relieved that Brody was thoroughly checked out after our hodge-podge of rushed doctors’ visits on Tuesday. They also checked his blood clotting level while we were there – it’s within the range the cardiologist wants so we are able to stop the injections and just keep on with the pills. The orthopedist is delivering a motion machine on Monday that Brody will need to use for 6 hours a day to begin rehabbing his knee. It will also help to disburse the rest of the fluid buildup.

In the meantime he will be resting this weekend and taking his meds. Currently he’s in the bedroom sleeping, and his snoring is music to my ears – it means peace, rest and comfort.

Since Brody was at St. Joe’s I was able to briefly visit with Max. He had three consistent (~20cc = decent) bottles in a row between night and day shift. We’ll take any improvement we can get.

Didn’t make it over to UCLA today. The nurse said Lola was still pretty lethargic. She hasn’t been nippling well and is starting to lose weight. They’re looking into causes other than recovering from surgery. Sent some blood work – initial results came back negative for infection and the culture will take 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.


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.


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.


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.


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.


Primary

by Kayte

UCLA has something called primary nursing. If there’s a nurse you really like you can ask them to primary, which means whenever they’re working they’ll take care of your baby. It’s great for continuity of care and we have some superstar primaries taking care of Lola. Unfortunately one of ours is getting married & moving away, and today was her last day. She got us through some rough days and taught us so much. Thank you, we will miss you! 20120710-221616.jpg

Max is 6lb 11oz and Lola is 4lb 6oz. Max doing well with breathing. Still having some episodes but they’re getting better. Haven’t had to bag him in two days! Stimulation and extra oxygen have been enough to bring him back.

The caffeine seems to have done the trick for Lola and she has been having fewer episodes. Follow up eye exam showed no change, maybe just a little better. If there continues to be no change they’ll wait until she’s 40 weeks to do laser surgery. Eating 38ccs at 24cal. Will do a LP sometime this week to clear the meningitis and a head ultrasound next week to check out her ventricles.

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Full Time Job

by Kayte

We got to the first hospital at 9am and didn’t leave the second hospital until 7pm. It was a long day, but very fulfilling. It was nice spending so much time with both of them. Luckily the traffic gods were with us and it took less than 30min to drive between UCLA & St. Joe and less than 20 minutes to get home from UCLA.

Max hasn’t had any episodes since he’s been back on the vent CPAP with a rate. The doctor thinks that his episodes are a central function (brain) and not pulmonary (lungs). Basically his mind has gotten used to the rate so he freaks out when he realizes that it’s not there. The plan is to wean the rate in very small amounts (2-3BPM) over the next several days so he becomes independent of it. His CBC (complete blood count) came back negative for infection which corresponds with what they saw on the x-ray yesterday. A repeat eye culture also came back negative which means the pseudomonas is also cleared. He’s in the 50th percentile for length and weight, and they’re going to begin fortifying his breast milk (22.5 cal) to help him grow.

Lola had a couple of big brady-desats (heart rate / oxygen saturation drops) this afternoon while we were there. They ran her Monday labs a day early and the CBC (complete blood count) showed a low hematocrit (blood volume) but a good white blood cell count (no infection). She’s getting a blood transfusion this evening which should help prevent those episodes. She drank both of her full-feed (32cc) bottles last night and we had a great breastfeeding session again today. Every once in awhile she gets so focused on the suck/swallow part that she forgets the breathe part and has a quick brady-desat. I just take her off the breast and “wake her up” so she remembers to breathe again – crazy how we just take this stuff in stride now.


Baby Basics

by Kayte

Brody and I took a “Baby Basics” class at UCLA today. We learned about baby CPR, car seat safety, feeding, bathing and a bunch of other stuff. Not quite sure we’re ready to bring them home yet, but it was good to be able to ask questions and get some preemie-specific information.

Max had his follow up eye exam today. Still Stage 1 ROP with no plus, and the doctor said it even looked a little better than last week. Hopefully it will remain on the downward trend. The doc will be back next week to check again. Max had a bad episode last night around 2am where they had to do CPR with bagged breaths and chest compressions (which we learned about in class today). They put him back on the vent CPAP with a rate of 20BPM. Last time he had an episode that bad he was re-intubated, so in terms of steps forward and backward he’s still ahead. They’ll leave him on these vent settings for a day and then wean by 5BPM per day as he tolerates it. A chest x-ray showed hazy but uninfected lungs and a repeat blood gas was acceptable, though not great.

Lola got to breast feed again today. She had a couple short bradys (heart rate drops) when she didn’t get the suck/swallow/breathe coordination just right, but overall did a good job. They’re still having a hard time keeping her antibiotic levels therapeutic and might switch her to an antibiotic drip to try to stabilize the levels. They checked her kidney function (which can be damaged by high antibiotic levels) and it is still good so at least the high levels haven’t done any damage there. They just need to make sure the levels are high enough to damage the meningitis. The attending is also concerned about her growth (or lack of). She may want to fortify the breast milk even more and/or send it out for testing to ensure there is enough fat & protein (though judging by her fatty brother I don’t think that’s the problem).