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).



Breastfeeding

by Kayte

It’s getting harder and harder to leave the hospital(s) now that we’re getting to interact with Max & Lola so much more. It’s so much fun being with them it sucks having to leave. Can’t wait for them to come home.

Big news for the day is that Lola breastfed! She took to the boob like a fish to water. Now in addition to one bottle per shift I’ll be able to feed her. Feeling more and more useful here 🙂 She’s up to 3lb 15oz which might not be totally accurate because they changed her bed last night, but getting very close to the 4lb mark. Not that they’ll automatically do the surgery at that point, but good to know that they could if they need to. Antibiotic levels are still labile and they’re having trouble getting therapeutic doses. She’ll probably have another LP (lumbar puncture) sometime next week to re-check the meningitis. Clinically stable, doing well, head circumference stable, breathing at 3LPM and 23% oxygen. Tough little girl!

Max is still hanging in there on the bubble CPAP. He’s seemed much more comfortable the past couple days and more awake/alert. I’m hoping this is a good sign that the breathing is becoming less laborious and he’ll be moving to the nasal cannula soon. He can’t do any of the fun feeding things like his sister until he does! He continues to get his albuterol treatments every 6 hours and yesterday they added pulmicort which is a steroid for the lungs/airways. Still a hefty 5lb 11oz.


Good Stuff

by Kayte

Highlights from today:

  • I walked into both hospitals and the nurses said “Hi, ready to hold?” and handed me my babies
  • UCLA called with GOOD news – Lola drank her whole 32cc bottle at 6pm


EEG – Take 2

by Kayte

They hooked Lola up to an EEG machine again last night to check for sub-clinical seizures i.e. seizures that they might not be able to detect with the naked eye. It’s pretty standard procedure for a meningitis diagnosis, and the current attending physician believes that they should be done more often with preemies in general. Results today came back good – no seizures! They said her brain activity is immature for her gestational age, but that is to be expected with everything she’s been through. Nothing much else the EEG can tell us.

I was there when the OT (occupational therapist) fed Lola her bottle. She showed me some good pointers for next time I try. They increased her feedings to 32ccs to try to get some extra calories and weight gain. Still at 3lb 11oz. The physical therapist also visited today and worked on some exercises. Spoke with the ID (infectious disease) doctors regarding the CSF (cerebral spinal fluid) culture. They want to continue on the vancomycin antibiotic and add gentamicin for synergy. Basically the bug is suppressed so it’s not causing any sickness, but there are still signs of it being in the fluid so they want to continue antibiotics until it’s cleared.

Max was doing good – very happy back on the CPAP with his rate. The doctors want to try a combination of sprinting on the vent CPAP with no rate and the bubble CPAP. Two different machines that kind of do the same thing. It’s one more thing to try to get him onto the nasal cannula. He had his last dose of antibiotics for the pneumonia and as soon as the IV line goes bad they’ll take it out which means he will have no more lines! Just a few leads to monitor heart rate and breathing, but getting closer to naked baby. Actually speaking of “naked” they told us we could start bringing in some little outfits to wear since he’s almost line-free. He had his alligator onesie on again today and I brought in a few others. We’ll see if the preemie stuff still fits him since that’s usually up to five pounds – he might just be a newborn!


Matching Nasal Cannulas

by Kayte


Spinal Tap – Take 2

by Kayte

Today was a little more eventful than the past few days. Not bad, just a lot going on.

They did a second lumbar puncture on Lola last night and were successful – 5ccs of fluid. It’s a good thing too, because the preliminary results show signs of a lingering meningitis (the glucose was low and the protein was high). They’re going to keep her on the 21-day course of antibiotics and re-test the CSF (cerebral spinal fluid) in a week. Lola also had her ROP followup eye exam today. No changes this week so no laser surgery just yet. Right eye is still Stage 1 and left eye is still Stage 2. They’ll be back next week to check again. She still weighs 3lb 11oz. They weaned her to 2.5LPM on the vent today but had to put her back up to 3LPM for the eye exam. She ate another 30cc bottle last night and the occupational therapist (OT) said the nurses can feed two bottles per shift now. Lola’s also getting another EEG to monitor brain activity – this time for 24 hours. It’s standard practice with meningitis, and the current attending physician thinks it should be standard practice for all preemies. Here’s crossing our fingers for everything normal…

Max had a big day – they got a great blood gas this morning and switched him over to the nasal cannula! He looked so cute and comfortable. He was doing great for awhile, but only lasted about 8 hours. They got a bad blood gas reading in the evening and put him back on the CPAP without a rate. Bummer, but getting closer! His PKU follow-up test came back negative so his newborn screening is all clear. Max weights 5lb 11oz. The nurses were able to get some great pictures of him with no tubes on his face. Can’t wait until that’s the norm!


Insurance

by Kayte

Because we don’t have enough to worry about…


Birthday

by Kayte

Oy. Either I’ve been running on reserves or adrenaline for the last two months, and both have run out at this point. I have been SO exhausted the last week and it seems no amount of sleep (in 3-hour increments) can remedy it. Guess this is parenthood…

Another good day with the kiddos. Got to hold both of them, hang out for awhile and help with their care. Not too much new going on. Took the rate off Max’s ventilator again and will see how that goes. Will try another spinal tap on Lola to get the CSF to test for meningitis – need to know it’s gone prior to the shunt. Both still on antibiotics for awhile. Lola ate a 30cc (1 ounce) bottle this morning which is HUGE – a full feeding. Now we know she can do it, just needs to work up to doing it for every feed.


Non-Nutritive Sucking

by Kayte

Not only is Lola taking one bottle per shift (6-10ccs) we also started “non-nutritive sucking” today. It’s a precursor to breastfeeding – just getting her used to the lay of the land. Really starting to feel like we have little babies here! Both Max & Lola are “driving the convertible” (as one of the nurses put it) – their isolette tops are popped and essentially they’re sleeping in cribs. We’ve been having so much fun interacting with them the last couple days that I haven’t even bothered to take my medical notes. A good sign!

Let’s see what I can remember medically…they want to try to do a second spinal tap (“lumbar puncture”) on Lola to get fluid to test. They need to know that the meningitis is clear before they do the shunt or it will just get re-infected. They’ve also been having trouble keeping her antibiotics at the correct saturation so it becomes even more important. They’ve been trying to wean her to 2.5LPM on the vent but she hasn’t liked it so far. Weight is up to 3lb 9oz.

Max is up to 49ccs feedings – his max for his weight. He’s got a couple days left on the antibiotics for the pneumonia but seems in the clear. They did another vent test today with no rate. Blood gas was okay but they weren’t ready to put him on the nasal cannula/high flow just yet. He’s big enough to regulate his own body temperature now so no more temp probe – one less wire!


Bottoms Up

by Kayte

I’m exhausted so I’ll make this short, but we had a great day with the kids today. Held Lola for a long time and got to try my hand at bottle feeding. She was able to suck 6ccs of breast milk. Also held Max for awhile. Were there for one of his breathing treatments so we got to see his face without all the scuba gear.

I’ll let the photos speak for our day 🙂 Goodnight!


Spinal Tap

by Kayte

Ugh. After all this drama about Lola needing a spinal tap to check for meningitis the procedure wasn’t successful and they said “oh well, at least we tried”. Sounds like it was more of a CYA thing than out of actual concern for her. Pretty crappy thing to put a kid through just to follow procedure… At least she seemed relaxed when we left, though she’ll be sore for a couple days. No plans to repeat the procedure any time soon.

In better news, Lola is up to 3lb 8oz – getting closer to that 4lb mark! They increased her feeds to 30ccs and the occupational therapist (OT) came by to try her out at nippling. She was able to drink 8ccs of breast milk from a bottle! She had good coordination but a weak suck, so the OT and nurses will continue to work with her on it. They’re starting out with 1 bottle feed each shift (twice a day total) and once she gets a little better we’ll be able to feed her too. This is one of the huge milestones for them being able to eventually come home, and so far so good. Breathing-wise she’s still at 3.0LPM and was high-satting at 21% FiO2 (room air). They tried her at 2.5LPM earlier but she didn’t like it, so maybe tomorrow.

Max is back up to 5lb 8oz and eating 42.5ccs. His big change today was taking the breathing rate off his CPAP. He’s getting O2 with some flow, but he is in charge of all the breathing. So far so good. They’ll do a blood gas in the morning and if all is well will try him on the hi-flow (same as Lola) tomorrow. This stretch of extubation is much less stressful than before – let’s hope he’s kicked that bronchospasm phase.


Physical Therapy

by Kayte

Max started his physical therapy today. Basically it’s just little stretching exercises for the babies so they don’t get so stiff laying in one position for so long. They take their arms and stretch them up and down, and same with the legs. The therapist looks for cues from the babies and won’t do anything the baby doesn’t allow them to. They also put some black and white pictures in Max’s isolette to give him some visual stimulation. Lola should start PT soon too. There’s also something called occupational therapy which is mostly just feeding – nippling at the bottle and breast. Hopefully they start that soon too.

Max is back up to 5lb 7oz but still looks much better than a couple days ago. Not so swollen. He’s up to 41cc feedings and they turned off his dextrose so no IV fluids! His PICC line went bad today (wouldn’t flush) so they took that out. One less tube. They had to run a new IV for his antibiotics, but that’s just temporary. His chest x-ray was the same today and they were able to wean him down to 10BPM at 27%FiO2. They tried taking the rate off completely but he was huffing and puffing so he still gets a little help.

Lola was 3lb 6oz – first time she weighed in over 1,500 grams. She needs to be 1,800 for the shunt. Grow, Lola, grow! Feeding and breathing settings all stayed the same today – they don’t want to move too quickly with her. Eating 27ccs and breathing at 3LPM and 25%FiO2. The new attending at UCLA wants to do a tap to test the CSF for meningitis. Nuerology didn’t want to do a ventricle tap due to the high risk factor, so they’re going to do a spinal tap instead. It still seems risky to us, but I guess it’s very important to know whether or not the meningitis is taken care of.


Double-Hold

by Kayte

Today was another double-hold day – love it! Held Max swaddled and Lola skin-to-skin. They both have their perks. Swaddled I get to look at them, and skin-to-skin I really get to feel them.

Both kids are up to full feeds! All breastmilk, no TPN. Based on their weight Lola is eating 27ccs and Max is eating 36ccs. With feeds every three hours they’re eating 17 ounces a day between the two of them.

Max is down to 5lb 3oz due to the heavy diuretics, but he really looks so much better and seems to be breathing easier. Lola is up to 3lb 5oz and we really hope she starts putting on some good weight soon.

Lola is still on the Vapotherm. They weaned her down to 3LPM at 27%FiO2. Once she gets closer to 1LPM they’ll take her off the machine completely. Max is still on the CPAP at 30BPM and 26%FiO2. He’s doing really great and they’re considering putting him on a machine like Lola’s soon.

Max had his followup ROP eye exam yesterday and has progressed to Stage 1. The doctor will be back next week to check again. Really, really hoping these guys don’t have to go through yet another surgery, but unfortunately it’s pretty likely that they will.

Here are some videos from the past few days – hadn’t had a chance to upload them in awhile.




Two Months

by Kayte

Happy 2-month, Max & Lola! We brought in some goodies to celebrate with the nurses, and Max & Lola gave us the gift of another good day.

Max pee-dieted himself down to 5lb 4oz and looks so much better today – more baby fat, less swollen. His chest x-ray agreed; a lot less hazy. His best chest x-ray in a long, long time. The RT on the night shift wasn’t comfortable with the RAM-CAN (remember, it’s pretty new) so they switched him back to the other cannula. Definitely not as cute/comfortable looking, but gets the job done. His vent settings were still around 30BPM but they were able to come down on the oxygen to around 26% FiO2. He tolerated his handling a lot better and seems to be wanting more socializing. He’s up to eating 3.5ccs and his TPN is down to 1.5ccs which means that after tonight they’ll probably just turn it off.

Lola had her followup ROP eye exam today. She’s progressed to Stage 2 and it’s probable that she will require laser eye surgery in the next week or two. They don’t do it until they get to Stage 3, so the doctors will be back next week to test. I really wish she didn’t have to go through another surgery, but the likelihood that it would regress and get better is pretty slim. She had a repeat head ultrasound to check something at a different angle, but the ventricles look about the same size. Apparently it’s more likely that she will grow into them rather than that they would shrink. Still eating 27ccs and no TPN. Got to hold her for a long time today – she is such a sweetie 🙂


Self-Extubation

by Kayte

Around 8 o’clock this morning Max decided it was time to be extubated and yanked out his breathing tube. He was getting close anyway, so they decided to go with it. So far, so good. He’s on the same RAM-CAN as Lola, but on a CPAP IMV machine at 30BPM and 35% FiO2. He looked very comfortable when we were there, and only had one apneic episode as I showed up (of course). They did a blood gas and chest x-ray after extubation and they were both pretty good. The RT let me give Max his albuterol treatment – an O2 stream pumping medicine through a nebulizer. You just hold up the tube and let the steam blow around his nose/mouth and hope he breathes it in.

Max is still 5lb 8oz, but they decided today that a lot of it is water weight (which we had thought for a few days). They gave him a double dose of diuretics and he proceeded to pee a 3oz diaper (which is huge). The diuretic zaps some of his vitamins so they increased his potassium supplement to accommodate. He’s up to 32.55cc feedings and still increasing by 1.5ccs every 12 hours.

Lola was doing great today. Got to hold her for a long time again and see her pretty awake. Still eating 27ccs at 24cal and getting most of her meds orally. White blood count continues to decrease and her hematocrit is still in the 40s. Her antibiotic levels were a little high so they adjusted them down. High saturations of antibiotics can damage the kidneys and ears so they want to keep an eye on it. She got her xopenex breathing treatment while I was holding her so I got to breathe a little of it too. They did a head ultrasound and we should get the results tomorrow, but head circumference is stable. Vent was at 5LPM and 21%FiO2 but they were talking about weaning the LPM.


Happy Father’s Day!

by Kayte

We had a fun day with the beebs today – got to hold both of them and do some quality bonding. When we got to St. Joe one of our favorite nurses had gotten Max all decked out for Daddy’s Day. His isolette was decorated in cute blankets and Max was wearing an adorable little outfit. It must have taken them an hour to get that onesie over all his cords, but he looked so cute. I’m starting to get antsy – want to steal my babies and bring them home!

In addition to his being cute-as-a-button, Max was having a good day. He had an amazing blood gas and they weaned his vent about as low as it will go (5BPM 23%FiO2). Tomorrow they may try to turn the rate off completely, and extubate again soon. Still suctioning large, thick secretions from the lungs, but it’s more white instead of yellow which is a good sign regarding the infection. He was tolerating his feeds well and up to 28ccs. Needed a little help to poop last night but apparently about blew the top off the isolette after a little “Vitamin G” (glycerin) suppository. Up to 5lb 8oz!

Lola was also mellow. They weaned her Vapotherm to 5LPM and 21% FiO2. She’s tolerating her feeds very well (27ccs @ 24cal) so their next focus will be weaning that vent. Still hanging out around 3lb 4oz .Head circumference is stable in the 30-30.5 range. We’re trying not to get our hopes up, but there is a small chance that she might not need the shunt. MOST kids in her situation end up with the shunt, but there is a small percentage that don’t end up needing it. As she grows she’s creating more vessels and the clotted areas are getting bigger, so sometimes the clot passes and resolves itself. So far her head isn’t getting any bigger, but we’ll just have to wait and see how it all pans out.


Another Boring Update

by Kayte

Not too much new to report. Lola is 3lb 4oz. Her vent settings are the same (6.0LPM 21%FiO2). She’s eating 27ccs (24 calorie fortified) every 3 hours. Still on the two antibiotics for the meningitis. Head circumference is stable at about 30cm. We got to do some kangaroo care today 🙂

Max is 5lb 7oz. He had a beautiful blood gas and they weaned his vent settings to 10BPM at 23%FiO2. If his next gas is good they’ll turn off his rate as a test run for extubation. He’s eating 26.5ccs every 3 hours and they’re increasing by 1.5ccs every 12 hours. His chest x-ray looked better and his secretions are improving – more white and less substantial. Still some drainage/crust from the eyes. He remains on the two antibiotics for the psuedemonas/pneumonia.


Day by Day

by Kayte

The sensitivity testing for Lola’s meningitis came back. The bacteria responds to vancomycin and is resistant to cefotaxime. They DC’d the cefo and she will remain on the vanco for 21 days to make sure to knock it out of the park. She’s also on gentamicin for 7 days which provides a synergy boost to the vanco. She hasn’t had any brady-desats since 2pm yesterday and seems to be feeling better. Her white blood count continues to improve and clinically she looks pretty good. Still breathing on her own at 6LPM and 23% FiO2. They’re keeping the vent settings a little high just to give her some extra help, but should start weaning over the next few days. Her big change today (they like to do one big change at a time) was the feedings. They switched her back to 27ccs every 3 hours at a fortified 24 calories (to help with the blood sugar). Her first big feeding went well – no residuals and she was able to maintain her blood sugar. Neurology came by early this morning and removed the dressing from her wound – she’s going to have some serious battle scars once this is all over with. She gained some weight last night and is at 3lb 4oz.

Max was also doing well clinically today. He hasn’t had any of his episodes since being put on the vent, just a few desats every once in awhile. He was up to 5lb 4oz, but they think it might be a little water weight as he looks swollen. They switched his diuretic from lasix (IV) to diurel (oral) which sometimes takes a little longer to kick in. He had some good diapers today which should help with the fluid retention. He had another great blood gas today and they were able to wean the vent to 15BPM and 24% FiO2. If he continues to do well they’ll think about extubating again in the next few days. He’s still getting 25cc feedings every 3 hours and his big change was switching some of his meds from IV to oral. They also changed his breathing treatments from xopenex to albuterol since his heart rate has been good lately. His hematocrit increased today which means he’s starting to make his own blood and will need fewer transfusions. Chest x-ray was still hazy and he’s still on tobramycin and ceftazidime for the pseudomonas/pneumonia.


Meningitis & Pneumonia

by Kayte

The doctors confirmed today that Lola has meningitis, which, in its most general form, means an infection in the brain (specifically the meninges). They were able to identify the specific bacteria and are running sensitivity tests to determine which antibiotics will kick its butt. The three antibiotics she’s on (vancomycin, cefotaxime & gentamicin) are already covering it, they just want to see if they can get more specific. She got another blood transfusion this morning (15ccs) to give her some extra oompf, kind of like Lance Armstrong. Preemie doping, which I’m pretty sure is legal. She was doing great extubated, they upped her settings a touch just to give her some extra support while she fights the infection. This morning her temperature was labile (on the low side) and she was having bouts of brady-desats (heart rate & oxygen drops) which the nurse attributed to the infection. As of this evening she was doing better with the brady-desats which could be due to the blood. Her weight was 3lb 3oz which was actually down almost 2 ounces from last night. She’s still on 9cc continuous feeds, and they increased the fortification to +4 calories. They’re hoping it will help her blood sugars so she can go back to feeds every 3 hours, and it should also help her to gain more weight.

The doctors are also sure that Max has pneumonia, but there’s no test they can do to confirm it. The important thing is that the switch in antibiotics (to ceftazidime) seems to be helping. His lungs were less hazy this morning, though they are still suctioning a lot of thick yellow secretions. He had one of his best blood gases in weeks and they were able to wean his vent settings. Once he gets over this infection they’ll think about extubating again. Max is up to 5lb 3oz which means he’s already outgrown a couple of cute >5lb preemie outfits I have at the house. Good boy! They’re keeping him at 25cc feedings for now to relieve pressure on the lungs, and he’s tolerating it very well, no residuals.


Antibiotics

by Kayte

Ugh I’m sick of these kids beings sick. I just want them to feel better and focus on growing!

Lola’s CSF (cerebral spinal fluid) came back gram positive with a staff infection. The two antibiotics she’s on (vancomycin & cefotaxime) are already covering it and her white blood cell count was better. In hindsight it might have been a good thing that her head split and prompted them to remove the CSF and reservoir before the infection got too bad. She had her follow-up ROP exam today. Both eyes are a little worse than last week, but still Stage 1 so no laser surgery yet. They’ll be back to check again next Tuesday. She was extubated again this afternoon and back on the hi-flow vapotherm (5LPM 27%FiO2). Her CBC (complete blood count) this evening showed a low hematocrit so she’s getting a blood transfusion of 15ccs. She’s back up to her full feeds of 9ccs continuous fortified with +2 (calories) HMF (human milk fortifier).

Max is still fighting his pseudomonas/pneumonia infections. He’s on tobramycin eye drops and they switched his IV antibiotic to ceftazidime to try to knock the infection out. Lungs looked a little hazier and they’re suctioning lots of pale yellow secretions. Vent is at 30bpm and 25%FiO2. No more bronchospams, bradys (heart rate drops) or severe desats (oxygen drops). He’s back up to his pre-intubated feedings of 25ccs every three hours and tolerating it well. Weight was 5lb 1oz.