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!
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.
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!
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...
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.
Last mother's day, I thought I had the best gift ever. I had this:
We had waited a long time for those lines and I thought just the thought that I would get to be a mother was the best gift ever. Last year on mother's day I hadn't even seen this:
I had no idea there were going to be three beating hearts in there, I was just so thankful there was one. Last mother's day I didn't have this:
and thankfully, I've been able to lose most of it...Most importantly, last mother's day I hadn't held this
or this
or this
and I hadn't heard this
or this
or this
Our journey to this mother's day hasn't been easy, but because of that each day I know that the greatest gift is to be a mother at all. I grow more in love with my little men each day and have a new center for my universe, but even as I celebrate the gift of being mom, a piece of my heart will always go out to the moms in waiting that don't know if they will ever get that chance. To all of the moms in waiting, your little loves will come to you in their own way and in their own time and you will know that they chose the perfect moment and the perfect path to being yours. The waiting felt like an eternity, but two little pink lines melted it all away and made it all worth it and whether your journey starts with two lines or a referral phone call, the day the waiting turns to preparing is an amazing day so yes, that silly test is the best gift I've ever received, because it meant I got to prepare for this:
and this
and this
and this
and this
and this
and this
and for all the snuggles, kisses, hugs, and adventures ahead!
Happy mother's day to all the moms, moms to be and moms in waiting!
