EIGHT unbelievable months!!

So I just realized that with all the excitement of holidays, the end of school and surgeries I never did an official 7 month post, but you've gotten a little glimpse of our last months' action through the other posts. So 8 months it is! The last month has marked one of the greatest months of change in our house since the boys made their appearance.We are most definitely men on the move, especially Mylo. We're also chatterboxes, as in someone is talking all the time, especially Victor. We also love to snuggle and snuggle, especially Oscar. One of my favorite things about this last month is watching them get attached to little loveys (so cute seeing them snuggle up with them in their cribs) so their pictures of the month this month are of the boys with each of their new best friends. I hope you get a little bit of each of the boys personalities through the videos, but we've got a new phenomena that the camera is very interesting so I often get silent stares when I break it out. I guess they are just getting camera shy already!  

Oscar and his alien

In this last month Oscar has established himself as our morning person. Oscar was our silent observer for a long time and then one morning changed all that. Marty went in to get "Mylo" chattering away that day and realized when he got in their room it wasn't Mylo it was OSCAR-he had found his voice! He now wakes up telling stories and playing in his crib every morning and has the biggest grin when we go in to get him!Oscar has a goofy little quirk too. He has to do what we refer to as "up-downs" after every meal. He will do these happily anytime that you hold him standing, but if you try to lay him down after eating without giving him a chance to "up-down" he will not have any of it. Oscar also remains our biggest snuggle bug and cuddles right in when it is time to be rocked to sleep. 

Mylo and Rudy the Rabbit

Mylo spent the last month becoming the big man on campus (he's seriously a chunky monkey) and getting his moves on! This child can get pretty much anywhere he wants to go now by rolling mostly, but he can also army crawl, but only backwards. He also eats and eats and eats and eats. So far he's gobbled up anything we put in front of him except for peaches. He's not a fan of those, but Oscar loves them. Mylo is the most resistant to bed time, but once he's down if he wakes up he'll play himself back to sleep which is fun to watch and hear through the monitor. Mylo has a killer smile and the dimple and the super sparkly eyes that go with it will win over anyone who walks through the door. 

Victor and his snuggle bunny

Victor's last month, as you all know, was a very big month for him. He is now BAG FREE! and already so much more comfortable. Even with the scars still healing, I remember holding him in certain positions that would make him squirm and wince, and he doesn't at all anymore. We're so happy to have this chapter behind us and Victor, who has always been a very easy going little man is so much happier and has been giggling and telling stories non-stop since we got home from the hospital. It will be fun to see how he develops now that the bag isn't in his way. Victor loves to stretch out really tall and do "so bigs" and hopefully his new found intestines will also help him put on the weight to go with his tall stretches. We are still going to be watching his weight gain closely with his endocrinologist that works with his thyroid issues to be sure there is nothing residual, but we're hoping that the surgery will turn around his weight gain in a hurry! 

This last month has marked a lot of adventures for our boys. We've started really getting out and about and I get more and more confident each day about my ability to do so. We started with lots of walks and now that the boys have good enough head control for the joey seat in their triple stroller we get to use that and it makes getting out around the neighborhood a breeze!

Mylo riding in the "joey" seat

We've also started going to mommy baby yoga and can't wait to do more this summer. We end up doing a lot of observing, since it's a little chaotic with all three, but then when I get a little one on one time at home I know some of what I can do with them. 

Boys all geared up for yoga! 

We love just hanging out in the yard in the shade and playing in the fresh air, but have also had lots of fun going out and about and have fully enjoyed celebrating at our cousin's graduation party and two baby showers in the last month. This month we've also gone to grandma and grandpa's, gone to school with mommy, gone shopping at babies r us, and visited Auntie Jenny and Uncle Shane. I'm aware that none of these things would be notable if it was just one child, but believe me learning how to leave the house efficiently and actually accomplish the things that you would like when you do is a feat and we are proud to be finding our way out and about!

At a baby shower for one of mommy's yoga friends (6 mamas, 9 babies under a year and 1 on the way!)

Enjoying summer breezes!

Resting and ready!

Oscar and Mylo come for a visit (and grandpa and grandma , too!)

Our extra day proved to be just what we needed. As the day went on Victor's eating continued to improve and stooling has followed which means we're back down to a more normal waist measurement and our belly isn't hard as a rock. Yesterday we had some very long, restful naps (both Victor and MOM!) and then our brothers came to visit! We also had a visit from our primary nurse Katie from the ICC and she certainly brightened our day! Oscar and Mylo got to take a walk down to see her and nurse Christine when they got here, too so everyone got to show off how big and strong they are getting!

This morning Victor's tummy is much softer and smaller so the rounding surgeon has said that we can be on our way! I asked a million questions and was nervous about leaving after having our first discharge derailed, but Victor told mommy in his Victor way not to worry and that he's very ready. I went down to grab some breakfast when he had nodded off, thinking he was down for his morning nap and when I returned he had wriggled himself down to the end of the crib with all of his toys and he was playing and laughing! Anyone that happy doesn't need to be in a hospital anymore, so the doctors and Victor are right, it's time to go. He's taking a nap now and we're waiting for paperwork to be done, but by noon or one we should be on our way. Good bye Children's! We're so very grateful for the wonderful care we've had for our health and the support we've had for our hearts on this very long journey, but we're ready to be on our way for good. Next time we're back, it will just be for a visit!

I can't help but share one last video of our time at Children's, Victor was a little wound up at bedtime after his brothers left last night:

Almost home...or maybe not

Yesterday Victor was able to start eating breast milk and he's been passing gas and pooping like a champ so we are well on our way! Yes, I do a little happy fart cheer every time I hear a toot! I said to the nurses yesterday I don't think it will be near as exciting when he poops in a potty for the first time after this. We've been waiting 8 months for this poop. Thinking back to those very  first 8 days before his first surgery waiting and waiting for him to stool while his ittty bitty tummy just got more and more distended while I consulted Dr. Google and read horror stories of preemies with NEC (I'm not going to explain, but if you want to google it you can imagine my fear). Well that is over, it all works now, but slowly. There is a delicate balance between pain management and getting everything working again. We don't want him to be dealing with pain in any way, but  narcotics slow down our digestive tract so even though he is wanting to eat on his normal schedule the bowels aren't moving fast enough to get rid of the waste for that eating schedule. So this morning all looked good and we were switched to all oral pain meds for our transition home and then 2 hours later they measured his tummy and he had an extra 2 cm and was very distended. Thankfully, he is still stooling and passing gas so it's not a concern as to whether or not he's all working, more a concern of getting him back up to speed, but that said, we do get another day out of the deal. The surgeons said "No going home until we're sure he won't be right back." Even though his time may be a little longer than we hoped, Victor is still the happy, patient little boy he's always been. We've even got a few laughs out over the last couple of days.

We're all holding up pretty well, but mama is missing her other boys and Victor is, too, I think. We have a picture of Oscar and Mylo in his crib and he spends a lot of time studying it and talking to it. I talk to the boys on the phone when I can and my mom says Mylo is really trying to find me in the room when he hears my voice They were supposed to come and stay at Ronald McDonald House with Grandma last night so I could be back and forth for night time feedings and snuggles, but the RMH was full with critical care families who get first dibs on rooms so that didn't work and we ended up having to do a combination of turning my dad into breast milk delivery service and a little supplementing with formula. When Grandpa Roger comes to get breastmilk this morning he'll be trading cars with me so they will have car seats for Mylo and Oscar and they'll all come in and visit this afternoon before bed time. Mommy can't wait!

Picture of the boys that is hanging in Victor's crib

Mylo and Oscar telling Victor to come home and play! 

Day 2: The Waiting Game

So now that Victor is all hooked back up everything is determined by how fast his bowels wake up. This morning he was alert and fairly happy when he wasn't sleeping and he stopped getting the morphine if they can help it so that he doesn't have his bowels get slowed down right when they are learning to speed up! The only issue at this point was that Victor was HUNGRY and we still couldn't feed him.

As the afternoon wore on Victor has continued to get hungrier and hungrier and harder and harder to calm. Snuggles finally got him to rest, but only for so long. He'd wake up attacking whatever he could get his hands on to eat...nuk, blanket, his bunny's ears, mommy's fingers, whatever he could reach! Finally at about 9:00, they determined his bowel sounds sufficient to start giving him clear liquids! I put that 1st bottle in and thought here we have it this will let him rest. Of course, I didn't think about what happens to a child who normally gets 6oz of breast milk at every feeding and hasn't been allowed to eat for almost 2 days and then you only give them 2oz of pedialyte...when that bottle was gone we got to see all of Victor's true colors.

From left to right: What they let me eat; what I'm used to eating...meanies!

It was worse than before he ate, he had resigned himself to being hungry, but this 2oz of watery stuff was a horrible joke. "Where is the rest?" he yelled in true Victor form. Thankfully he only had to let that sit for a 1/2 hour or so before we could move on to larger quantities, still watery stuff, but enough to fill a tummy. Since then aside from waking up to get vitals and meds and more pedialyte he's been resting comfortably once again so hopefully tomorrow they will let him move on to breast milk and maybe just maybe he'll be  home by Friday or Saturday. 

A successful surgery

As we started our morning we thought it would be a very long start to the day as our sweet Victor was not very happy that his brothers were being fed and he was not. With some good grandma snuggles while mom and dad got all set to go, he settled in ok and was able to sleep for most of the ride to the hospital and was pretty good natured while we got him set to go. Even made some of his signature Victor banter with his admitting nurse! He really is such a trooper. He was taken back to surgery around 8:30 this morning and we were getting updates hourly and all progressed exactly as it was expected, if not better. The inguinal hernias were repaired in the first hour and the iliostomy take down was done next. Dr. Kreykes updated us around noon that everything had gone wonderfully and the intestines were in even better shape that expected so the hook up was very straightforward. 

Speaking of Dr. Kreykes, we must give a big shout out to our friend Sarah, his wife, who is being induced with their 3rd little one tomorrow and was given strict instructions to keep that baby in until after Victor's surgery so that he could be here and she pulled it off. It certainly would have stressed this mama out to have a change in surgeons at the last minute so we are very happy that  no changes had to be made. Can't wait to hear that their sweet gal has entered the world healthy and happy-maybe she'll be Victor's prom date one day! 

The rest of the day progressed without much news he has been resting comfortably most of the time. He's fairly well sedated, but when he is disturbed for cares and vitals he definitely let's us know he's uncomfortable with a very sad cry that's horse from the intubation. I'm having flashbacks to the NICU where I had to comfort my dears without picking them up. He can be held, but I can't imagine it would be very comfortable with all of his tummy scars so I realize that it would be more for me than him and will wait for him to be really ready for snuggles.   

If all goes well we'll start seeing stool in the next day or two and then he can begin eating and, if stooling continues to go well, it will be a day or two after that to go home. So we're hoping for 5 days. Keep sending those healing vibes, our sweet boy and his mom and dad are grateful! 

Final bag change

So for those wondering what Victor has had to endure over the last few months I documented his final bag change. He has to go through this every three days or anytime the bag leaks. We've been lucky that most of the bags have survived the three days, but we've also had some very inopportune moments where we had to drop everything and change the bag. This little man is so very patient!

Waiting for all the supplies to be lined up...

Ready to go

Remove old bag with adhesive remover

Clean off skin OUCH!

The bath...

I like this part!

Burrito baby, all dried off!

A protective powder

is applied to the really raw spots.

A plastic skin barrier is applied.

More powder

Hold the new bag on with a heat pack for a minute

Tape around the edges

All Done! (Finally)

The next 24 hours will be very long, but Victor will feel so much better when he can move around without the bag and hopefully he'll grow more quickly, too since he'll be able to completely utilize his intestines to absorb nutrients. Wish us luck and send us healing thoughts! We'll be at the hospital by 7:30 and he'll be in surgery around 9am. Recovery can range from 3-10 days inpatient so I'll keep everyone updated as we continue our journey...

Daddy Day!

Today, daddy got to sleep in

and hang out with his other babies

because all good dadies deserve a break

even if they are a little goofy like ours!

Happy Daddy Day, We LOVE you!

Victor's Big Week

As most of you know, our sweet Victor wasn't quite done with his hospital stays when he came home in February. The surgery that he had when he was 9 days old would need to be reversed at some point. Well, some point is here and in the end it will be very, very good to have this behind us as it is the end of the road for our boys remaining preemie-isms and when we are done we shouldn't have any reason to see the inside of a hospital (until they start climbing trees and jumping off monkey bars). Today he completed the 2nd of his pre-op appointments so that we can relax for the weekend and gear up for what will most likely be a very long week. He is already such a strong little man and even through what seemed like an eternal blood draw he just held on tight and looked at me after the initial prick and barely shed a tear (can't say the same for mama, but you know how that goes). The picture above just breaks my heart. After the blood draws he held his hand like that with that "how could you let them do that mama" expression on his face for a good 5 or 10 minutes. I wish I could have told him that there weren't any more owwies like that in his future, but something tells me next week will bring more than we wish for, but when it is all said and done, Victor will be ostomy bag free and we will hopefully get to walk away from Children's for a very, very long time! I'll try to keep the blog up to date next week with his progress and as always we are so very grateful for all the good thoughts, prayers, intentions or whatever your beliefs might offer to bring our Victor a safe and quick recovery.