We have reached a big milestone. Our boys are oficially past their due date which means the medical community no longer sees them as "negative” in age. Today we are 12 weeks old or 2 days adjusted. All of the boys are showing us that they are really here now. Oscar took off rolling over late last week, and Mylo is grabbing on to things, and Victor is sitting here breathing room air as we speak! We are all making strides in the right direction which is a huge relief.
This has by far been the longest stretch of our journey (aka the most tears from mama). It's really hard leaving them in either direction and I always feel like I'm in the wrong place, but I have to trust my instincts and keep some words of advice from a former NICU multiple mom in mind, "go where the need is greatest." This changes day by day and hour by hour, but it helps me know that I'm doing what is best. I've decided that where we are now with two home and one here at Children's is like Mile 20 in the marathons I've run. You've gone too far to give up but the wall you have hit seems insurmountable. I know from my training that I need to get to mile 23, that's where you get that final wind that makes the finish fun (and possible). I've never run a race I didn't finish and this one will not be any different, except the reward will be a whole lot greater than a finisher medal and a long sleeve t-shirt!
So it's looking like blogging may only be a monthly occurrence in my new life as the mother of triplets, but I'll try to keep everyone posted a little more frequently as time goes on. As I type, Oscar is nodding off in his bouncer after a morning bath at HOME! So that would be our biggest news. We have one baby home! Hopefully our brothers are close behind. I have a lot of photos and videos to sort through, but for now here is our family Christmas photos in the ICC:
Victor is coming along, but as we've said before his road is simply going to be a bit longer than the others. After weeks of not being able to kick the oxygen habit, he has officially been diagnosed as Chronic Lung Disorder or more officially Bronchopulmonary Dysplasia. This means that it will simply take him longer to get off oxygen as his lungs have more developing to do and some scarring likely from the intubation during his surgery and we have to move forward with that as a part of his life for now. That means that we are beginning to work on feedings by mouth with Occupational Therapy despite his breathing challenges and if everything else looks good and his oxygen needs have come to a baseline we could come home with oxygen. This is very scary for Marty and I, but as I look at the children around the hospital who are heading out to their cars hooked up to IV's and monitors of all sorts, I remind myself that we are really very lucky if this is all we come home with. Even with all this Victor is really looking amazing to us these days. Along with the Chronic Lung often comes water retention and swelling so Victor often looked really puffy and uncomfortable in his own skin, but with the diagnosis came treatment for the water retention and he's filling out in a chubby baby way, not a uncomfortable puffy way which is very exciting to see! Victor remains our attentive little guy who spends more of his time awake and just taking it all in. He loves music and listening to his family talk. He is also our super snuggle bunny and when you cuddle him in close his oxygen needs and heart rate go down and he relaxes right in. I have visions of life with all of them at home: Victor permanently attached to me or Marty in a sling or pack while we play with the other boys. He just likes to be held close.
Oscar, like I said, is HOME! Oscar came home on December 22nd after 61 days in the hospital and became the best Christmas present ever. We are thoroughly enjoying having him here and can't wait for his brothers to join him. The world here is certainly more stimulating than the hospital and Oscar is taking it all in. When he's awake he spends lots of time just looking around and is very content to hang out in his bouncer or on a boppy by me telling us stories. He's getting pretty good at outings since there are plenty of follow up appointments that come along with being a preemie and we go in often to see our brothers. With these though we know that he is growing and right on track for his age. He has an appropriate level of disdain for diaper changes and certainly lets us know he'd rather be doing just about anything else, but all in all Oscar is very content and is letting Marty and I sleep occasionally. We should see very little delay with our little Oscar and really our only remaining issue is a mini war on diaper rash which I appear to have won with my nipple cream--hey, whatever works right?!
Mylo is ready to come home.....almost. He passed his car seat test the same day as Oscar, but was still working on feedings. Mylo is just hanging out and has a very good "don't bug me mom" groan whenever we try to wake up to eat or changing diapers or whatever. Mylo is our sleeper and wanting to sleep all the time is getting in the way of eating enough to grow without the help of his feeding tube. As of yesterday, he is on his second round of ad lib feedings where he gets to decide when and how much he eats for a day or two and if he grows, he goes home, if he doesn't he goes back to tube feedings and we try again in a few days. This time seems to be going better and we are hopeful that we will have Mylo home by the weekend. We're pretty sure that Mylo knows how sad mommy will be when the day comes where we have to leave Victor alone in the hospital and he is being a holdout to keep the peace in the family.
Mommy and Daddy are doing well through all of this. Marty is stretched very thin between work and the hospital and now, with a baby at home, that only gets more difficult. He's a great sport helping out with midnight feedings though so I can get a little sleep, too. We are both very ready to have our family in one place as the running around is getting very old, but we are very thankful to my mom who has come to stay so that we can get back and forth without packing Oscar up every time. I'm enjoying hearing my mom interact with Oscar as she is quite the baby whisperer and her way with him is magical.
I'm sitting in Victor's room after a quick check confirmed that I do in fact have three sleeping babies* (although I believe I'm hearing Oscar stirring in the room next door) and since this is a rare occurrence with them all on different feeding schedules, I thought I'd try to get in an update with a couple of pics, too!
The boys are all doing well. We had a big day last Sunday, Nov 27thm and graduated from the NICU and are now officially ICC (Infant Care Center) patients. This came as a big surprise for us since we were told on Saturday that they would start looking for 3 beds together and within an hour we found out that they were, in fact, available. I, of course, melted into a puddle of tears when hearing about the move (both happy-we're closer to home, and sad-we're leaving our NICU family tears) and Marty was just baffled by his crying wife. He just kept saying, "I don't get it, this is good, right?" and of course he was right and we had lessons in "you don't have to get it, you just have to hug me." At any rate here are our little geniuses in their very cool NICU graduation hats from one of our favorite primary nurses, Kris...
As we've made our transition to the new unit we are getting to enjoy our family outside of their isolettes as they have all gotten to move into cribs. This has been one of my favorite milestones, it is worlds better when I can just pick up my boys and snuggle whenever they need attention and it's so much easier to change diapers and get them dressed. The first step in the move is getting them all bundled up in their isolettes with the temperature off and making sure they can maintain their temperature.
Oscar all bundled showing he's got what it takes for his crib move:
and all moved in:
Mylo ready to go:
and making the move:
and Victor all moved in (he got moved in without pictures because he was such a champ with his temp he had to move before I got back from dinner since he was overheating!)
We've also gotten to start getting cuddles from grandma:
and real big boy baths:
All in all, we are all doing really well. Oscar is just down to figuring out how to eat by mouth and he'll be headed home and he's getting the hang of it so it shouldn't be too long! (I'm hoping to have him be the best Christmas present ever). Victor and Mylo are still on oxygen and have troubles with desaturating their blood oxygen levels when they get full tummies so it will be a bit longer for them. Victor has a few added little issues that continue including facing his follow up surgery, having some troubles with his metabolism because of his hypothyroidism and the absorption issues that come from only having part the intestine doing it's job. The boys all had their second round of preemie eye exams that look for Retinopathy of Prematurity (a condition concerning the blood vessels in the eyes of preemies that can cause vision loss) and both Oscar and Victor have Stage 1 ROP which typically corrects itself with age, but they will be followed with biweekly eye exams until it wither improves (hopefully) or worsens. If it worsens, there is a laser surgery to treat the condition so we're hoping for better next time! Aside from all the medical issues, all the boys are getting to be so much more alert and spend a lot more time awake and aware. It's really fun to watch their little personalities forming and I can't wait to see them all in the same room!
Here are a few more pictures of our fun with the little men:
Mylo taking a snooze with dad
Mylo with all the tape off his face!
Oscar and dad with Oscar's favorite fish face
Snuggles with Victor
Mom's a little tired...
Visits from aunts and uncles
and special great-grandmas
Victor peeking
Oscar snuggles
*this blog post may have started in Victor's room with 3 sleeping babies, but that was three days ago and as I had predicted Oscar was stirring and the remainder of the post has happened during the brief moments that all three boys are asleep over the course of three days...Hopefully we'll work towards a feeding schedule that doesn't leave them all sleeping at different times before they come home or mom and dad will truly be zombies (happy to have them home zombies, but zombies nonetheless) in no time!
As I'm getting ready to head off to the hospital so I can see the boys for a little bit before we go to Marty's family's thanksgiving lunch I can't help, but think of how much I have to be thankful for this year. My little pumpkins are 1 month old as of yesterday and that is certainly my number one item to be thankful for. Everyday they've been in our life, they've brightened it. (Even the hard ones where mom cried a lot) The amazing growth they've had continues to astound me. When they were first born they slept for 23 1/2 hours a day and now they are so awake and alert and aware of the world around them. It's amazing how connected they are to us when we speak or touch them, their bright little eyes are so very much a part of this world now, it's hard to remember a time when we barely ever saw them (or in the case of Oscar with them being fused shut we really didn't)! With all the changes in how they move and interact with us, sometimes I forget about the actual physical growth which is astounding as well. Victor reached 3 lbs 2 days ago (now 3lbs 2oz) so he's added half his birth weight since in just a month! Oscar and Mylo are 3lbs 12oz and 3lbs 13oz so before we know they'll be over the 4 lb mark! Mylo continues to store all his weight in his super cheeks and is now getting dimples! I'm sure those of you with full term babies would disagree, but I think I'm about to have full fledged chunky monkeys on my hands!
In all of the gratitude that surrounds the boys is the gratitude for all the support that we've had through all of this! Our families and friends are truly amazing and there aren't enough thank you notes in the world to express how grateful we are for meals delivered, rides to appointments, house cleaning, remodeling projects, hand-me-downs and the list goes on. These boys have entered the most loving world! It's truly incredible to imagine what their future holds knowing what an amazing community they will be surrounded by as they grow.
My list of gratitude could go on and on and include each of my boys toes and fingers and tiny little eyelashes, but I'm just about done pumping (and there's a whole lot of gratitude for my body for what it did to grow those boys and what it's doing to feed them now, but that's a whole other post) and will be heading off to the hospital so I'll end this post of gratitude with a HUGE thank you to our medical team at Minnesota Perinatal Group, all of our amazing neonatologists and surgeons, and more than anyone our nurses at Children's! Our primary nurses are truly the most loving and caring hands we could ask to have surrounding our boys when we can't be there. They've also been an amazing support to us when our roller coaster has gotten a little scary. Children's is really a remarkable place because of it's remarkable people and as I've said many times if you have to be somewhere other than home with your children you couldn't ask for a better place to have to be.
Happy Thanksgiving to you all-I'm off to see my little turkeys!
This blog post is long overdue and I'm sorry for all who've been hanging out with no updates in weeks...being a NICU mom is an adventure and then just as I thought we were settling in, I lost the charging cable for my laptop so a sporadic facebook post from my phone confirmed I still existed, but a full on blog post was out of my reach. It is found and I'm ready to share our early adventures in parenthood with you all. First, a look back at a very important day: the boys' birthday pictures!
I can't begin to express the wild ride this last three weeks has been. The doctors describe parenting a preemie as a roller coaster ride and when you have three preemies some days it feels like a ride you'll never get off. So far, we're thankful that ours is the little Alligator roller coaster ride at Como Zoo not the giant Valley Fair ones. Here are three weeks in review for each of our little men!
Our little man Victor has had the roughest road so far, but is doing very well and GROWING fast! His first week was pretty uneventful with feedings gradually increasing and oxygen assistance gradually decreasing. We were amazed that such a little man could keep right up with his brothers. Then when he was nine days old and still not moving the food through really at all he had an x-ray (the first of many things a mother shouldn't have to watch--I'm getting tougher by the minute!) and it showed that there was a blockage in his intestine and it would have to be corrected surgically. So the next day our friend (really--he is our friend and we knew our Victor was in good hands) Dr. Kreykes performed our triplets' first surgery. They found nothing anatomically wrong, just a muconium plug that got him all backed up since he was so little. They were able to take out that little piece of intestine and he will have to have a second surgery to reconnect everything when he's a little bigger so for the time being he has a stoma and an ostomy bag. He had a rough few days after the surgery and I learned how different and heartbreaking the "something hurts" cry is than the "don't change my diaper" cry, but with wonderful nurses and lots of love and snuggles when we could he got through those yucky days and is doing much better. Now that that little road block is corrected, he is making BIG strides in the growing department and today weighs in at 2 lbs 12 oz (11 oz over birth weight).
Beyond all of the clinical side of Victor's life, he's our most sensitive little man. He will let you know when his diaper is even the littlest bit wet or if his bed isn't perfectly positioned to his liking. He loves to hear his family talk and when we are around his room, he's very alert and his eyes really track where the voices are coming from. Victor is our first official thumb sucker and is good at calming himself this way. He's our blondest and we haven't figured out for sure which side of the family he looks most like. Here's a peek at Victor's first week (the pictures after that haven't all been sorted through yet):
From the beginning Oscar appeared to be on the fast track home. He was eating more and faster than his brothers and was off off oxygen in what felt like the blink of an eye. The doctor last week even began talking about transitioning to a level 2 nursery and then Oscar decided to stop pooping (you'll notice that in the land of itty bitty babies it's all about poop and oxygen) which of course sent me into panic mode as I began picturing surgery number 2. Well it doesn't turn out that he needs that surgery, but he will need another down the line. The x-ray on Oscar didn't show a blockage just a lot of air and distention in his tummy so he got a couple of days off from real food and is on IV feeds again to give his tummy a rest while he has a tube that suctions out the gas from his tummy. He HATES this tube and we hope he gets to lose it tomorrow in favor of the feeding tube which is much preferred. In the process of all this, it was discovered that Oscar has a hernia, so even though he doesn't need the surgery that Victor has, he will have to have a surgery in a few weeks when he gets a little bigger to fix that.
Oscar is by far our strongest little dude. He can pick up his head and move it around to his liking and he is a squirmer and we are always curious to see which corner of isolette we'll find him in when we pick up the cover. He's a man on the move whenever he has a chance! The first week Oscar's eyes were still fused closed and we got the neat experience of seeing him open them for the first time when I was holding him one day. One eye opened before the other and he still likes to have one or the other eye peeking out not both. I'm pretty sure Oscar is my little guy as he reminds me a lot of my nephew Jori and my uncles, but rumor has it he looks kind of like his Uncle Tim, too. We'll have to wait and see. Here is Oscar's first week.
Mylo's been our least worry as far as any major medical issues. He loves to eat and has no troubles giving us some serious poo--after the road the other two have had I'll take all the poo necessary to mean less time in an operating room! Mylo's only real struggle is that when he fills up his big belly he gets lazy about breathing so he can't seem to get off that last little bit of oxygen in his canula. He's our biggest at the moment at 3 lbs 2 oz!
Mylo looks just like Marty and loves to stretch out long and show us what a big boy he his! Mylo also loves to watch things going on in his room and is already very excited about anything he can put in his mouth: pacifier, Marty's hand, q-tip with milk, MOM (he's pretty determined that he's ready to eat like the big boys if only he would remember to breathe!) Mylo is very easy going and is content in any position in his bed. Here is Mylo's first week.
After my update from the nurses this morning, I thought this blog would be about Oscar's big day, but by the time I got there around 10 this morning, it had become a big day for them all!
Yesterday, I was discharged from the hospital and I am doing pretty well with recovery physically, but that, of course, meant that I no longer have a bed 1/4 mile from my boys. It certainly feels like something is missing in our house even though the boys have never been here before, but as sad as it is to leave them behind, I know that our little guys are in amazing hands with their nurses as Children's and I also know that my ability to rest and recover is critical to me making enough food for them which has thankfully been going awesome!
That's enough about mom though, this blog is now focused right where it should be, on our boys!
Each day when I talk to Dr. Mrozak in the morning either in person or over the phone we get a little update on what is going on with each of the boys and when I called this morning I got the best update ever...Oscar got to come off the ventilator!!! When I got to the hospital to visit, I found out that there was even more than that happening today. Oscar wasn't going to be alone; little Victor would also be off the ventilator by evening! In the meantime, he had to have a central line put in since his cord lines weren't working and he wasn't tolerating feedings which meant they needed a better, longer term IV so they don't have to keep poking him to move the location. Mylo just keeps plugging away; he struggles because he's super feisty wants to be kicking and moving all the time and he's always pulling at his vent and his bili sunglasses and everything. He did have his Oxygen assistance lowered a bit so we are hoping he's off the vent when we go in tomorrow. He also just got to start feedings today so we've got two boys getting mama's milk and I'm crossing my fingers Victor can handle the good stuff sooner than later so he can catch up with younger, big brothers!
While we are there, the nurses let us handle many of the boys cares so we get to take temperatures, change diapers, give oral cares (milk on the q-tip) to help them keep establishing that sucking reflex that will be so important when they are ready to eat without the tubes. Today the boys had it in for mom and were out to show me that they were just like all the other boys and, as soon as you open their diapers, it was time for another pee party! This, of course means the whole ordeal of changing their bedding. This is where my day got EXTRA exciting since Milo and Victor both pulled this on mom, I got to hold Victor up for the bedding change and even though he didn't get to leave the little isolete, just resting in my hands he went from kicking and squirming and just melted into them and then he opened his eyes and just stared at me. It had to be one of the most incredible moments of my life, to hold my sweet boy and, being a super lucky mama, I got to have TWO of those moments today, because Oscar did so well with CPAP that we got to start kangaroo care for him today! This means that we get to lay him on my chest or Marty's skin to skin for an hour each day. He did beautifully with it today and just snuggled right in. Marty sat by our side and talked to him and he opened his eyes for the first time (his eyes have been fused which is normal for their gestational age) while he was laying there and listened to his dad talk!
I could go on and on, but the important part is all of them are doing well and growing strong! I am going to try to put an all picture post together on Sunday's for their weekly updates since I now write these while attached to a pump, it's a little trickier for me to get all the pictures added in.
