S’not Much New…

by Kayte

…except that Max has an eye infection. The last couple days we’ve noticed that his eyes were crusty/goopy so they started him on some antibiotic eye drops. Today he had a pretty gross runny nose so they’re starting him on proactive antibiotics in case there’s more infection brewing. Our first snot-nosed kid 🙂  Max is still extubated and still eating. It seems like this breathing thing might have finally caught on. He still has apnea, but not as severe or as often. He’s now up to 12.5ccs of breast milk and they’re starting to decrease his TPN (IV nutrition) accordingly. We got to hold him for a long time which, as always, was amazing.

Lola was doing well, not too many changes. They’ve been able to wean her vent slowly and she’s up to 4ccs of breastmilk, tolerating it well. No reservoir tap yet, but we’ve asked them to let us know if they schedule one so we can be there. They took her dressing off last night so we could see the incision and little bump of the reservoir (pictured above). You can see why they would want to wait a few days for it to heal before they start sticking needles in there. She had a few bradycardia (low heart rate) episodes, but either came out of them herself or quickly with some manual breaths from the vent. Their game plan for her right now is just to recover, get stronger and grow big.


Well-Behaved

by Kayte

I’m happy to report that both children were behaving very well today! Definitely nice to have days like this.

Max is now up to 4 pounds! He’s still tolerating his feeds very well and they’ve started increasing by 1.5ccs every 12 hours. Last check-in with the nurse had him eating 9.5ccs every 3 hours and tolerating it. He also seems to be breathing much better – a few bouts of apnea but nothing as severe as yesterday, and not as often. I’m not sure if they have the vent settings dialed in better or if he’s just getting used to it but it looks like he’s catching on. He had a couple of huge bowel movements that were “transitionary” meaning it looks like the last of the meconium is heading out and the digested breastmilk is starting to come through.

Sister is working to catch up. She’s still 2lb 12oz but they started feeding her today – 3ccs every 3 hours. So far tolerating it well and, same as with Max, they’ll increase her by a few ccs every 24 hours as she tolerates it. They’ve been able to wean her vent settings a bit and extubation will be her next big milestone, along with the feedings. They decreased her fentanyl a bit and she looked very cute and comfortable – awake but not agitated. Hopefully the next few days will just be about eating, growth and progress for her!


Apnea of Prematurity

by Kayte

Just as we seem to get one kid under control the other starts stressing us out. Brody walked into St. Joe today to find Max turning blue and not breathing. Apparently part of this whole extubation/preemie thing is severe bouts of apnea where the baby essentially forgets to breathe. The nurse/RT has to “remind” him by waking him up; pinching his foot, tapping his chest, making him mad. He was doing pretty well most of the day, but when we were there he just kept having episode after episode. It’s pretty scary for us, but the staff didn’t seem overly concerned. They just kept “reminding” him and he came back, sometimes in a few seconds sometimes in a few minutes. If for some reason they can’t get him to breathe on his own they can always bag him and stick a tube back down his throat before any damage is done. Still, I can’t help wondering what if they don’t catch it in time…which would be pretty hard with the multiple staff and alarms on all of the monitoring equipment but STILL, it’s my baby… The doctor said these episodes are still preferable to re-intubating him, so as long as his blood gases and saturations stay stable I guess this is what we’ll be dealing with until the breathing thing clicks in his brain. On a good note he’s still eating and is up to 6.5ccs every three hours. They’re going to start increasing his feeds by 1.5ccs every 12 hours instead of every 24 hours so he should be moving up in no time.

Lola was the low-maintenance one for once. Still recovering from surgery but doing very well – all vitals stable. She was a little more awake and agitated than they would have liked so they increased her fentanyl to relieve pain and sedate her a bit. There was talk of doing another tap tomorrow to remove more fluid and they’ll be taking their cues from her about next steps; extubating, feeding, etc.


Chopped

by Kayte

I did something nice for myself today – got my hair did! It was SO long and I hadn’t had the time or energy to do anything with it, so I decided to go shorter. My stylist said I was just a few inches away from being able to donate to Locks of Love, so we took a full 10 inches off. Now I have easy, light summer hair and a child somewhere will have a nice new hairpiece!


Ommaya Reservoir

by Kayte

Lola’s surgery today was a big success – the ommaya reservoir is in place and her excess brain fluid can now be tapped safely and at will. She handled the surgery like a champ and has been doing really great all day. Heart rate is down and all of her other clinical signs look great. They did a couple chest x-rays which continue to improve each day. She really looks and seems so much healthier. Now time to catch up to her brother!

Max is still extubated, though struggling. Clinically all of his vitals are good, but the CO2 in his blood gases has been creeping up. Despite that they’re pressing forward thinking if he can just get over this hurdle he’ll make it this time. They’ve played with his vent settings to give him extra help as he needs it and are watching him closely. One of the main benefits of being extubated is that his mouth is free to suck on a little preemie pacifier. He loves it and looks so cute with it in his little mouth. Sometimes babies can’t handle the coordination of sucking and breathing at the same time, but he seems to be able to multi-task. Feeds are still going well and he’s up to 5ccs every 3 hours. He’s on a record 36 hours extubated and 4 days in a row of feeding. Go Max go!


Success

by Kayte

Lola is back from surgery! Everything went really well. They got about 10ccs of fluid during the procedure which is about the max amount they would ever take at one time. That means there was a little bit of pressure, but not too much. She’s still heavily sedated but looks peaceful and is getting some well-deserved rest.

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Neurosurgery

by Kayte

They just took Lola into the OR – it will be a few hours. Be strong, babygirl!

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Eating & Breathing

by Kayte

Max had a big day today! His feeds are going well so they increased him to 4ccs every 3 hours – that’s equal to about 1 ounce per day. This is the longest he’s been “on” feeds so hopefully that means it’s finally sticking! After two days of training on the vent sprints they extubated him again today. So far so good; he seems to be breathing well and keeping his blood gases where they need to be. Hopefully he’s able to maintain that too. Eating and breathing – such a big boy!

Lola’s big day is tomorrow – reservoir surgery! Please send lots of extra good thoughts our way around 8:00am PST! She was behaving badly when we visited today – still “tachy” with heart rate spiking in the low 200s. Apparently she was doing fine before and after we visited…guess she just likes to keep us on our toes.

Max – 3lb 13oz
Lola – 2lb 120z


Tachycardia

by Kayte

Whew we’ve had a long day… Up at 6am to pump, at St. Joe’s by 8am with coffee for the nurses, lunch and to the second hospital by noon and then we went to see The Dictator this evening. Just getting home now and glad we went out to do something fun but Zzzzzzz!

Today was pretty good, not quite as uneventful as the last couple days but not the worst either. Lola was having spells of high heart rate (tachycardia) spiking in the 200s again today accompanied with large swings in her oxygen saturations (50s-100s, normal range is 90-95). They checked her blood count and thought that a low blood volume may have been the culprit. She got two blood transfusions today (10ccs each) and seems to be doing a little better. Her heart rate is now 180-190s (they would like to see 160s) but hasn’t spiked above 200 and her saturations aren’t dipping below 70s. They don’t think they’ve quite fixed the problem yet though, so they’re making some other adjustments too. They traded in her albuterol treatments for xopenex which is essentially the same drug but without the side effect of a high heart rate. They’re also going to check her caffeine levels to make sure her dosage isn’t too high. Even with her labile numbers today they’re still planning on doing the reservoir surgery on Monday. She’s scheduled for 8am so we’re going to have another early morning.

Max was doing well today. We got to hold him for a long time today – well over an hour. It is so, so great to be able to cuddle with him. His cousin Kate sent some Baby Einstein music so we played that for him today which he really seemed to enjoy. He was tolerating his feedings well with no residuals so they increased his amount to 3ccs every 3 hours. He did great all day long and had a little residual at his 9am feeding. Hopefully he tolerates throughout the night and can get another increase tomorrow. He was also doing well with the vent sprinting. They increased his sprints to 1 hour every 4 hours and he seems to be doing well, hopefully on the road to extubation.

Okay, now some homework before the last pump of the day and then sleeeeeeeep!


All Quiet on the Western Coast

by Kayte

Wow, another good day. If we’re not careful we might start getting used to this…

We visited Lola first today and found her wide awake again. I think she really matured under that bilirubin mask – we just couldn’t see her to know it. She now weights 2lb 10oz – exactly 1lb less than her brother. She finished her bacterial antibiotics today (10 days) and has another 4 days on the fungal antibiotic. Other than that she’s just on the fentanyl and albuterol. Her ventilator settings were about the same and she pooped again on her own this morning. They scheduled neurosurgery for her reservoir on Monday so it sounds like they’re not going to mess with her much before then. Just let her recuperate from last week and get strong. Her chest x-ray this morning was amazing – there was actually black/air to be seen! She was still off the bilirubin light which is really good. Before it seems her levels shot up after one day off it, but they were about the same today. It would be wonderful if the jaundice was finally gone…it’s so much easier to interact and bond when you can actually see her face.

Max was in breathing training today. They have him on a regimen called “sprinting” where they turn the vent super low for an hour at a time and let him breathe on his own. They do it every 6 hours to help him build up his lungs to prepare for another try at extubation. He did well during his first two sprints so hopefully that translates to a successful extubation. He was tolerating his feedings well (no distention or residuals) and they’ve increased to 2ccs every 3 hours. Max weighs 3lb 10oz – a whole pound bigger than his sister. While I was changing his diaper we heard his first little toot which, aside from being adorable, is a good sign because things are moving through the intestines.


Lola Awake!

by Kayte


Day by Day

by Kayte

The Thursday curse may be broken… Not only that, we even had a GOOD day today.

It appears someone has kidnapped Lola and replaced her with a different baby for how vastly improved she is. It’s hard to believe that suctioning out some mucus plugs constitutes a miracle… We’re definitely not out of the woods yet though – her lungs are still pretty hazy and we have that whole brain surgery thing to contend with, but we’re heading in the right direction. Her chest x-ray today showed the lungs expanding equally, her O2 saturations & blood gases have all been great, and they had her weaned down on vent settings that we couldn’t believe; 23 breaths per minute and 26% oxygen. Two days ago she was pretty much maxed out at 60BPM and 70-80% oxygen. Wow.

We had a fun day with her. Bilirubin levels were back down so she was out of the light and had her mask off. When we got to the hospital she was super awake and active – looking all around and responding to us. It was SO nice to see her after so many days of worry and separation with that eye mask. Her only other real news was that she pooped on her own this morning which bodes well for when they want to start feeding her – we at least know her guts are working.

Max was doing great today after his short-lived extubation yesterday. They have his vent settings weaned to 23 breaths per minute and 26% oxygen in preparation for another try at extubation. The doctor put together a little weaning game plan with the goal of extubating again on Saturday. Hopefully this time it sticks. So far the feedings are going well AND he pooped on his own last night (no suppository) which is great. They increased his feedings to 1cc every 3 hours and we’ll see how he tolerates. Max is up to 3lb 9oz now and he should start packing on the ounces when he’s good enough breast milk for nutrition. We had an awesome nurse today who let us hold Max again so all in all a pretty good day!


Daddy Time

by Kayte


8.98 Gallons

by Kayte

These kids better start chowing down soon.

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Cautiously Optimistic

by Kayte

We’re trying not to get too excited just yet, but the doctor said Lola’s chest x-ray this morning looked like it was from a different baby! Yesterday and last night they suctioned out some mucus plugs, and all of a sudden her right lung just opened up. The last chest x-ray showed that both lungs were expanding equally which is pretty much amazing. All of her vitals and blood gases are looking good, she’s off the hydrocortisone and weighs 2lb 7oz. She is still having some problems with her O2 sats and had one scary moment today where her heart rate and O2 saturation dropped super low and they had to give her manual breaths with the bag, but it lasted less than a minute and she was fine the rest of the day. Since then they’ve been weaning the vent settings to 38BPM and 42FiO2 which is very much improved from the past few days. Her head circumference is the same and as soon as the NICU decides she’s stable enough, neurology is ready to take her for the reservoir. If tomorrow is anything like today they might even do it on Friday. She’s been toying with us so much the past couple weeks that we’re still cautiously optimistic at this point, but that’s a big improvement over a couple days ago!

Max kind of got put through the ringer today, but in a good way as they were trying to make progress. He was so stable and looking so good that they wanted to try to extubate him again. When we got there they had his vent settings cranked way down to test out his manual breathing. Ironically (or freaky-twin-thing?) he also had an episode where his heart rate and O2 saturation plummeted and they had to bring him back up. He was doing better after a xopenex treatment (asthma/albuterol) so they extubated him and put him on the SiPAP machine, but he only lasted a few hours before he got tired and they stuck the tube back in. Last check-in he’s much happier back on the vent and doing well. He weighs 3-1/2 pounds now! They also started trophic feeds again today, so hopefully he handles those better than the extubation.

It’s kind of insane trying to keep up with the emotions from one day to the next, but I’d definitely be happy with more days like today! Grow, babies, grow!


Holding Steady

by Kayte

Well nobody burst a lung, perforated an intestine or lost control of their vitals so I guess we’ve had an okay day?

They stopped Max’s feedings yesterday because his stomach got a little distended and loopy. It was looking much better today so they might give him a little rest and try again tomorrow. His lungs sounded a little tight so they were going to give him some albuterol to try to open him up. His two big milestones are still the feedings and extubation, both on hold for now. Other than that vitals good, peeing good, nice and relaxed.

Lola wasn’t any worse today so we can be very thankful for that. Her chest x-ray showed a little bit of aeration in her collapsed right lung which was good, and the over-expanded left lung looked about the same. Clinically her vitals were all fine and she had two good blood gases in a row. Despite the wacky lung situation, she’s still somehow managing to exchange oxygen and CO2 in her bloodstream.

It was cute – the nurses had them both on their tummies today and they look like little mirror images of each other. They love being on their bellies – very peaceful.

 And notice how Lola’s nurses have her and her isolette all decked out? The UCLA NICU nurses are all about bows and *pretty* isolettes.


Movie Night

by Kayte


Strong

by Kayte

Let’s hope she lives up to her name…

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Happy Tears

by Kayte

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High & Low

by Kayte

After having the best day with Max we had one of the worst with Lola. Going from one extreme to the next is confusing, exhausting, frustrating. We don’t even know what we should be feeling at any given moment.

Lola’s chest x-ray came back looking really bad. Her right lung is completely collapsed, while her left lung is over-inflated to the point of bursting. There’s not a lot they can do medically because doing something to one will adversely affect the other. If they try to inflate the right lung they could puncture the left, and if they come down on the vent settings to ease up on the left the right lung may never open. They also don’t know what the cause is. The over-inflated left lung may be compensating for the collapsed right lung, and the over-inflated left lung could be compressing the right lung causing it to collapse. Chicken and egg. The doctors are talking in terms of miracles instead of medicine right now.

The funny (ironic? cruel?)  thing is that clinically she looked like she was having one of her best days since being transferred to UCLA. We were there for hours with barely a beep from the machine. I’ve never seen her oxygen sats so stable, and yet this monster is lurking just below the surface. For now they’re just watching and waiting – keeping a close eye on her clinical stats and blood gases. So far so good, but time is ticking…

And then of course there was our morning with Max. Being able to hold him was the most amazing thing ever. After more than a month I finally got to hold one of my babies. Also on the good news front was a big poop – the first one we got to see. He still hasn’t digested much food, but he’s not distended and he isn’t having any green residual so they’re moving forward with the feedings. Hopefully one day soon it will come out the other end.