Tomorrow marks a HUGE milestone for our family. Kristen finishes her MBA from Indiana University-Bloomington Kelley School of Business!!! This is an amazing accomplishment in and of itself, but that she persevered in this program and remained with her cohort while we had 3 babies in critical condition is absolutely incredible. (She certainly had a ton of help from her classmates.) On top of all that, Kristen works about 50-60 hours a week, too. I just don't know how she does it! So, Kristen presents her capstone project today to the IU faculty first and then to the top 300 execs at Ingersol Rand. Then, ahhh... Then, she and we will have the weekends back. Praise the Lord!
Luke with Gma working on standing
Ella driving a car that is also a piano. Such a magical toy!
Ella taunting the dogs. A favorite pasttime of both Ella and Will.
So these triplets are busy these days. Ella is crawling and pulling up to a stand. She can entertain herself for longer periods of time now by simply inspecting a toy at length. She is a vocal baby who does lots of screeching and lately says, "Bababababa!" over and over again.
Will is a maniac. That kid is on the go. He Army crawls 100mph and goes all over the house. He wants to get into everything. It's out of control. He is so bored with being cooped up this winter. We'll all be happier when it gets warmer, and Will can socialize outside of the house everyday. Will is in such constant motion that he can't be still long enough to develop sitting. We're working on it, but we're not worried about it.
Luke is doing GREAT! We're so impressed with him! He is now rolling from his tummy to his back. He reaches for toys, takes bottles much more efficiently than he used to, and is opening his mouth to take in solids!! When he looks at you, he's fully engaged in that unspoken communication. He's smiling, laughing, and expressing himself. We're working on reaching across mid-line for toys and sitting. Luke gets OT and PT once a week for one hour each. He does stretches and core exercises every day. The best news of all is that Luke's seizures have been controlled with trileptal since September! We did go to the Cleveland Clinic back in October, and they confirmed he was doing too well to need brain surgery at this time.
Lukey remains in the PICU. They can't send him home because the seizure meds are effecting his respiratory status. He is stable, and his O2 saturation is great even on his usual 1/4Liters O2. However, Friday morning his blood gas was 80. That's pretty high. It means he's not expelling his CO2. Also he's acidotic. They had to put him on a high flow cannula at 8Liters! That's some real wind. He had a better gas in the afternoon, but his AM gas just now was back to being ugly. They have to decrease his seizure meds in order to improve his respiratory state. Since his seizurees are subclinical (not observable, only in his brain), it's super scary to us that they'll decrease his meds without doing another EEG to be sure he's not seizing. Oh we've got to get this entire situation fixed. I can't wait to take him to the Cleveland clinic.
I feel so bad for Lukey. I hate that he is 5 1/2 months old and only lived in his home for 6 weeks. I hate that the hospital feelsjust like home. I hate the hospital cafeteria feels nostalgic. I hate that Lukey is in the ICU, and that because my babies have been through so much, if he's not on his death bed, I'm not even phased. I hate that he's in ICU, and I just think, "Well, it could be worse." I hate that I'm ok with this.
Nonetheless, the truth is, it could be worse. This place is scarier than the NICU. In the NICU when I looked at the other parents hanging out in the parent louge talking about their little feeders and growers and how hard this is, I was (usually) glad they were sheltered from what was our reality there. Here in PICU with Lukey, I know I'm the one who's sheltered from a much scarier reality. It's one thing to see a little baby on an oscillating vent. Even though it's horrible, you know he's growing and some day he'll beat it. It's a whole other thing to see a 10year old on an oscillating vent with his whole body shaking. Oh... This place is such a dichotomy. It's polar opposites all at once; it's a life saving place where miracles happen, but it's also a personal hell for many of the people here.
How long will we stay? I'm ready to take Lukey home.
Well the blog slipped by the wayside for a while. The pace of our lives really increased when Ella came home and the boys were eating every 3 hours. After her discharge we still continued our normal NICU schedule and just dragged Ella with us. We had no choice because Will had his big reanastomosis surgery the same week. Luckily she's big and tough and handled it well. Will rocked his surgery, and Luke went to nasal cannula. At this point the whole tone of our NICU experience changed. Before we were constantly sick to our stomaches. Death had never felt so looming and even tangible. Once everyone turned their corners, we loved being in the NICU, nurturing our babies, learning so much from our neos, nurses, and therapists, and appreciating the care and love we received there. On July 15 the boys were discharged. It was the best day ever. Will came home on prescription formula, and Luke came home on 1/4L oxygen, breathing treatments, and one oral med. Not too shabby. We were just happy to escape with our lives.
First time outside the hospital...15weeks old.
Life at home was unbelievably crazy at first, and we were so lucky to have two sets of grandparents, aunts, cousins, neighbors, and friends helping us. Reflux became a huge issue, but we recently got it under control. We have THE best babies in the world. Now all three sleep through the night- I mean, at least 7 hours. Sometimes we have to wake them to eat. We've asked every doctor if this is ok or if something is wrong, and they've all told us it's just a blessing. We'll take it!!
LUKE
Back in the NICU Luke was officially diagnosed with Sturge-Weber Syndrome (SWS). SWS is really a collection of symptoms: Port Wine Stain (PWS), glaucoma, and seizures all caused by dilated blood vessels. An MRI of Luke's brain showed some atrophy and calcification on his left occipital lobe. The dilated blood vessels near the frontal lobe, evidenced by the PWS on his forehead, hog the blood in the brain, leaving the back (occipital) region with less. This lack of blood causes the calcification and atrophy. So we took him home anticipating that at some point he would have seizures. There's no glaucoma so far, and he is seen by an opthamologist regularly. His eyes may have been spared from the PWS.
Currently Luke is back in the hospital at St.Vincent Pediatric Intensive Care Unit (PICU). He started having seizures again. (We left the NICU weaned from all seizure meds and operating under the theory that the seizures back when he was 5 days old were simply due to his prematurity.) It started on Sunday when we noticed he looked different. We checked his O2 saturation, and he was the usual 100%. I went to bed, but Kristen didn't trust him. Luckily she slept on the couch and put him in the bassinette beside her. At 2:30 she woke up to him seizing. We checked his O2, and it was only 45%. We called an ambulance. He was stable on the ride but then had to be bagged (like mouth-to-mouth but with a hand pumped bag) 4 times in the ER. They were so close to intubating him, but thank goodness he stabilized.
After the ER, we got a PICU room, and Luke was hooked up to an EEG. Luke cried for 14 hours straight and did not sleep because they couldn't let him eat. We understood; if he needed to be bagged again, he could puke and get puke in his airway. Finally after 14hrs of stability, I talked the doc into letting him eat. The EEG showed that Luke is having subclinical seizures- meaning he doesn't look like anything is happening, but it's shown by the brain waves. Prior to meds, the seizures were sometimes short, sometimes long and occurred often. He seized off and on all day Monday and Tuesday. Most of the seizures were focal but a couple of them did spread. He had three focal seizures about 8 minutes each (kinda long) yesterday, and we're on our third type of medicine. He hasn't had one in almost 24hrs so they think they have his meds right. Unfortunately his condition is progressive, and it seems like only a matter of time before his seizures break through the meds. Our neurologist, Dr. Lisa McGuire, is setting up a consult with the Cleveland Clinic before we're discharged. His brain is so immature that it sounds like surgical treatment will still leave him with a good prognosis. I hope that's true.
Lukey with EEG on his head and PIV in his foot. He has blown veins in each hand, arms, and feet. The foot IV went bad last night and no nurse would touch him- which I appreciated. They wanted the pediatrician to do it, and luckily he got it in on one of his blown up hands on the 2nd attempt.
As soon as Luke is back to himself and adjusted to the meds, he can go home. He needs to be appropriately alert. Right now the meds make him too groggy. He needs to eat more regularly. Thank you so much for the prayers and positive thoughts.
Oh my goodness, where to begin? The triplets are really growing and improving every day! My time with them is now busier because they're all taking bottles every three hours. So at 8, 11, 2, and 5 am and pm, I take Ella's temp, change her diaper, feed her a bottle, burp her, and snuggle her. Then on the half hour, I move on to Wilson and repeat. At the top of the following hour, I repeat with Luke. Then I go pump, and return to do it all over again. I am having the time of my life! These guys develop more personality every day, too. They're amazing.
Here's a silly picture of them. Luke ran over to Ella and Wilson's pod very fast, so he looks all frazzled. Ella didn't know to expect his company, so she was only half dressed, but this is our first pic of all three together. Oh, and Wilson slept through it.
Luke
After about a week of CPAP, Luke has graduated to VapoTherm. It's a high flow nasal cannula, so it only has minimal face gear, but it gives him some pressure. He's doing great! We're so proud of him! We finally got a good look at his face, and, of course, he's so adorable. Check him out!
Little Lukey!
Here Luke has his nasal cannula off for a bath and tape change. He has a little cradle cap- just dry, peeling skin. He's over it now. Kristen calls this his Blue Steele look-just like in Zoolander.
So, nowadays, Luke's taking about 1-2 bottles a day. He knows how to suck and get milk, but he often just tires out before finishing. For all of his other feedings, we just put the milk down the tube. He's about 3lbs 3oz now. We try to hold him every day if he can tolerate it. He hasn't been held much in the past 10 weeks- maybe 3-4 times on the vent and maybe 2 times on the CPAP. So he loses O2 (as indicated by his monitors) when we get him out. We have to balance wearing him out, burning up calories, and getting him used to being handled with just letting him chill and focus all energy on growing.
The big boy taking his bottle!
We recently found out that Luke has some port wine stain (PWS) birth marks. Sometimes you can barely see them, but they're on his face, cheeks, neck, back, and right arm. They appeared on April 21. We know the exact date because the Nurses Ashley and Amy pulled his PICC line from his arm on April 21 thinking it was infected when they noticed the redness around it. Every since then, we've been trying to figure out what the heck it was. Drs. Maylock and Simon both told me they thought it was a birthmark, but I have to admit, I thought "Wow, they must think I'm stupid. That is not a birthmark. They just don't know what it is, so they're saying it's a birthmark." Then they called dermatology, and when the dermatologist told me, I was absolutely shocked. Kristen and I were both shocked. Luke has a large patch over his right eye. This demarkation and location put him at risk for glaucoma (since it's so close to the eye) and Sturge-Weber Syndrome (since it's over a VI nerve to the brain). Stuge-Weber also causes seizures... sounds familiar. However, we're not jumping to conclusions. Our staff tells us Luke has about a million reasons he could have had those seizures, and we read that only 10-20% of those with PWS in that location have Sturge-Weber. I also read that Stuge-Weber is known for "uncontrollable" seizures, and we're controlling Luke's seizures just fine. Please pray that we continue to control the seizures and that he does not have Sturge-Weber Syndrome. We're worried for Luke, but we're also hopeful that laser surgery will help with the marks. They say we can start that in his first year of life. We're also hopeful that in Luke's lifetime, laser surgery will improve. Right now lasers can fade the PWS, but not really make it disappear.
Ella
Ella is getting so, so big! She's 5lbs 2 oz and ready to go home! She's totally off of O2 and taking all of her feedings in bottles. That means she has no tubes on her face. She hasn't had any IVs in a while, so she's just like a regular baby. Well, she does have her two wires that hook up to her monitor, but that's it! Also, she's out of the isolette and in a crib. She's doing a great job of maintaining her body temperaure. It won't be long now! Ella is a great eater, but not such a great pooper. She really needs to do that more often; it scares us!
In order to go home, Ella has to pass a few tests. She has to be taking all of her feedings by bottle and maintaining her body temp in open air, which she is. She already took and passed her hearing test, but she still has the car seat test. She has to be able to sit in her car seat for an hour and a half (I think) with out dropping her oxygenation below 80%. So, that means she has to have a strong enough neck and core to sit up without letting her airway get floppy and close off. Here's the hearing test equipment and her open air crib.
Here's Ella pretending to be shy.
Aunt Kathryn came to visit this weekend!
Wilson
This kid is really developing the personality! He just open his eyes really wide all the time and looks around checking out the world. He's also thinned out a little bit. Any pics I have shown with him as a chunky baby with multiple chins were misleading. That was all water weight. Once his meds that make him pee off that water weight kicked in, he was slim again. Here he is trying to work the pacifier.
Wilson is just about ready for his reanastomosis surgery. They're going to put his intestines back together! He's only 3lbs 11oz right now, and I was really hoping he'd be bigger for the surgery. However, today as we were standing at his bedside, Dr. Simon said, "Look at him, his nasal cannual is not even in his nose (he'd ripped it out), but he's satting 100%. You just fed him 33 ml of milk, and he dumped 32ml of them. It's time. He's ready." So it's sooner than I'd hoped, but respiratory-wise, he's strong. He's not using the nutrients in his food, he's just dumping them straight out. He lost weight this weekend, so we've got to do something. The surgery seems like the answer. Also, the ostomy bags keep leaking, and then we have to tear up his skin by replacing them. The leaky bags ruin clothes and beds about every three hours lately, and they take up a lot of the nurses' time. Nurse Ashley is currently the reigning champion of bags; hers stick the best. I'm super scared for the surgery, but I'm also excited to have him back to normal.
Today is Luke's big day! Last week Dr. Simon weaned Luke off the oscillating ventilator, and this week Dr. Maylock weaned down his ventilator settings super low. This morning he was extubated and placed on CPAP! It's so exciting! Since he settled down and stopped crying and since they found his right amount of pressure and oxygen, he's been doing great! His pressure is 7cm, and his oxygen is 42% and weaning down. I'm so, so happy that he doesn't have to have that tube down this throat anymore! It's so wonderful not to have any babies on the vent. It feels totally different.
Here's Luke's last picture on the ventilator:
Here's the big event:
Wilson and Ella snuggling for the first time!
Ella is now learning to bottle feed! We've tried about three times, and this third time she at least wasn't in total shock when the milk hit her throat.
This video isn't exciting but it reminds my mom of her mother, so I thought it might be entertaining for family.
Oh and in other good news, Luke had a totally normal brain scan this morning!! Wilson still had some mild to normal ventricular dilation! We are so, so thankful for more answered prayers. (They don't even both scanning Ella anymore.) Then the eye doctor came from Midwest Eye Institute. Luke and Ella look good, just premature. Wilson has some indicators of potential retinopathy of prematurity (ROP), but we're not worried yet. The eye doc comes every Thursday after lunch, so he's keeping track of all of them, and we'll worry when he says to be worried. The worst of ROP is basically a two detached retinas. Most of the time ROP doesn't get that bad and is treatable.
The big news of the day is that Ella moved in with Wilson!! Census is up here at the NICU, and our big kids no longer needed their own rooms. Ashley moved Ella over and organized all of their medical equipment. They're a little snug, but we love having them together. Kristen and I brought them out of their isolettes at the same time for a little bit of snuggling. We had such a great day with our babies today!
Ella's really growing up and getting big! She's still on the nasal cannula and her feeding tube is now in her nose. She looks great!! Now we can see her full face. She can suck on her pacifier, and she's not wasting calories trying to pull it off her face like she did with cpap. CPAP was so much more work for us and the nurses. It was so hard to fit it to her face and head and to keep her nostrils sealed around it. Nasal cannula just lays in her nostrils. Her oxygen requirement through the cannula is very minimal, usually about 25%. (Our room air is 21% oxygen.) They've also turned her thermostat off in her incubator. They set the temp now and are slowing bringing the temp down so that she can learn to keep her body temp up. She still in the incubator though and not yet in an open crib. She's wearing clothes now too!
Since the CPAP hat gave her a pretty severe conehead, her PT and her OT gave her a little donut/halo thingy to lay her head in. They come twice a week to check her out and stretch her. The halo helps her balance her conehead so that she can lay directly on it and correct the shape. It's a little big for her so she's actually able to scoot away from it. Then she sometimes gets her chin in her chest causing her oxygenation and heart rate to fall. We try to use it just a little every day. It actually is helping a lot. She looks much better.
Ella is up to about 25 ml of milk every 3 hours. She now weighs 3lbs 4oz. Here's Ella!!
Luke
Luke is improving, but he had one big scare over the past two weeks. One night he dropped his heart rate so low that his nurse had to had use a hand pumped bag in an effort to bring him back up. (Basically giving him CPR.) She still couldn't get him to come back, but the neonatalogist came quickly. He was able to bring him back up by bagging him really hard. Thank goodness! It was very scary for Kristen. :(
Apparently Luke and Wilson have matured enough now that they are much more aware of the tube down their throats. If it's not in just the perfect spot, they clamp down, refuse to let the vent work, and just plummet. The hand forced air pops them back open and brings their numbers back up. We went through a couple days of Wilson and Luke having to be bagged multiple times a day.
Since birth Luke hadn't made much pulmonary improvement, so we took a big step and started steroids. About two weeks ago they attempted to take him off the oscillating vent and put him on the conventional vent. That lasted for two days before he had one little mucous plug in his vent tube that caused a desaturation of oxygen in his body so severe that he couldn't quite recover from it. He had to go back to the oscillator. After that he just remained stagnant. Dr. Maylock talked to us about the pros and cons of giving steroids to babies like Luke. Apparently some time ago they stopped using steroids on newborns because it was thought to cause CP. Typically these babies were on long courses of steroids. Now medicine has swung back to using steroids on babies who are a few weeks old (not just born) and for just 3-5 days. So we decided that since Luke was so stuck in a rut, we should give him the 3-5 day dose of steroids. Kristen had just read some blogs about kids with severe BPD (Luke has severe cystic BPD) who were really helped by them. After 3 days he went on the conventional vent and has only been at 21% oxygen. The best thing about the conventional vent is that he can receive albuterol and pulmicort through the vent. Now we can focus the steroids right on the lungs, which is perfectly safe for him. Also, he could not be held when on the oscillator. So now that he's on the conventional vent, Kristen held him for the first time tonight! Here's Lukey!
Mommy holding Luke for the first time.
Luke is up to 7 ml of milk every 3 hours, and he now weighs 2lbs 5oz.
Our Little Lukey
Wilson
Wilson has made some great improvements! Last time I wrote he had just been placed on CPAP. Wilson lasted about a week on CPAP before they tried him on nasal cannula. After just one day on the nasal cannula, he just ran out of steam. We were so upset!! They put him back on CPAP, but he didn't even have the energy for that anymore. He had to be reintubated. We let him rest up for a week and pumped him full of albuterol, caffeine, and pulmicort. Tuesday they put him straight from the vent to the cannula! He is doing very, very good on the cannula this time! Every time they go to the cannula, it's like "the big reveal"! We have no idea what they really look like when they're on the vent or CPAP, so the cannula is so exciting.
Wilson did give us a scare by not putting anything in his ostomy bag for 10 days. In other words, he didn't poop for 10 days. We were very nervous about it. Finally he came through. Whew! Because of his intestinal issues, Wilson just had milk for the first time today. He started off with a couple of days of pedialyte, but now he's getting 3ml of milk every 3 hours. They're only going to increase his feeds very slowly to be certain his bowels are working right.
Wilson is adorable!! We're still trying to get a good picture of his double chin. This kid is gaining weight right before our eyes. Wilson is 2lb 12oz.
