Miracle Miles Surgery Update!

We’re home for a few minutes before we head back to the hospital, but I wanted to post a quick update on the surgery today for Miles.

After an eleven hour day at the hospital (five of which were spent in surgery), I’m happy to say that the surgeon was able to successfully perform the complete surgery for Miles and connect his esophagus to his stomach!! The surgeon said he wasn’t sure when he went into the procedure whether or not he’d be able to accomplish this. Miles’ esophagus pouch was higher up than he had hoped, which led them to believe that the distance from the stomach was greater than it needed to be to repair. However, after looking at the fistula which connected to Miles’ trachea, they determined that the fistula had enough extra skin to successfully connect it to the esophagus. Definitely a miracle! Especially for a baby of his size! The surgeon even told us this was one of the prettiest surgeries of this type he’s performed in a while. There really weren’t many issues. Definitely words of encouragement!

To make a long story short, baby Miles spent 5 hours in surgery today and it appears that everything was corrected successfully! For the next couple days he’ll stay heavily medicated to ensure that he doesn’t move while he is healing. The doctors have informed us that his condition may get worse over the next couple days as his body adjusts to the pain and starts the healing process, but that it should start improving within the week. They should also be able to adjust his settings on the ventilator to compensate for some of the issues. Then, in about 7 days they’ll do a scan of the esophagus, and test to make sure there’s no leakage. As long as he heals properly, they’re optimistic they’ll be able to start feeding him momma’s milk through his stomach tube within a couple weeks.

We still have a long way to getting him to the point where he can suck and swallow normally, and there will likely be some challenges along the way, but the first major part of this recovery was the surgery which appears to be a success.

Thank you again for all your thoughts and prayers today. We’re heading back to the hospital now, so I’ll post another update in a day or so…Once Miles has a chance to recover a little from surgery. Please continue to pray for Miles’ healing. It’s still touch and go for the next few days, but the scariest part is over.

Talk to you soon,
D&B

Happy New Year!

Happy New Year!! I can’t believe it’s already 2010, and the boys are now five weeks old as of today! That’s right, it’s been almost a month since the last update and I’m sorry. I’m such a slacker.  This blog initially started out with the intent of updating friends and family on a daily/weekly basis, but it now appears that may have been a little too aggressive. So… my New Year’s resolution is now to keep this blog updated at least once every couple weeks. We’ll see how that goes. Thanks for visiting.

Well, a lot has happened the past few weeks. Both of the boys continue to grow and gain weight each day. It’s amazing to look at pictures now and see how much their appearances have changed in these last five weeks. Both boys have gained over a pound each and both have been holding steady. According to the doctors both boys are “solid”, which is definitely great news!

Baby Jaxon aka “Jax”, is now weighing in at a whopping 4lbs 5oz. That’s a 1lb 4oz gain over the past five weeks. Jax is doing very well. About a week ago he was promoted from the incubator to his first big boy bed. It’s really an open air crib, but he’s now regulating his own body temperatures and he seems to be doing well. They still have him on low flow oxygen, but only because he forgets to breathe once in a while. Jax is also still being fed through a tube that goes through his nose to the stomach, but they’re working on getting him comfortable feeding from the bottle. So far he hasn’t liked the bottle feeding much, but he is showing improvements each day and he definitely loves sucking on his binky. Once he’s perfected the ability to suck, swallow, and breathe, then he can try breastfeeding. That should come in the next couple weeks. Although we haven’t gotten an exact date for when Jax will be coming home, we think it’s probably going to be in about four weeks.

Miracle Miles, as we like to call him, is now weighing in at 3lbs 7oz. He’s up 1lb 1oz from birth! Miles has already gone through so much in his first five weeks from his gastrostomy to four blood transfusions to being poked and prodded every which way imaginable. Regardless, I have to say he’s one tough cookie. Definitely takes after his mother with that! Miles has been holding pretty steady these past few weeks since he had the gastrostomy tube put in. His vitals have been solid, as have his blood pressures. God is definitely doing miracles for this one. As most of you know from my previous posting, Miles was born with an issue called “coarctation of the aorta”. Well, I’m pleased to announce that as of today this no longer appears to be an issue. Doctors have noticed some increase in the size of the coarctation, and Miles’ blood pressures are holding steady. This is a good indicator that what was initially thought of as a coarctation may in fact be large enough to sustain normal blood flow without any type of surgeries! Praise God! The doctors are still monitoring this, but at this time it doesn’t appear to be an issue. The other issue Miles is experiencing is the Esophageal Atresia, where the stomach and esophagus aren’t fully connected. Because of this, Miles still can’t eat breast milk like his brother. Instead, he is fed through an IV and given various fats and lipids to help gain weight. Although this appears to be working and Miles is gaining weight, one of the side effects from this condition is that the reflux appears to be backing up into his lungs. To help get rid of the fluids, Miles is on extra doses of lasix medication. This is helping, but we don’t expect it to be resolved until Miles has his surgery to close off the fistula.

That being said, doctors have tentatively schedule Miles for surgery next Wednesday, 1/13/10. Doctors are confident that Miles is stable enough to handle the procedure, which will require that they collapse one of the lungs and keep him on a respirator. Of course mom and I are nervous, but we’re also optimistic that this will be the start to a complete recovery. Doctors are planning on going in and will attempt to fix the entire problem. This will involve clipping the fistula from the trachea and connecting the esophagus to the stomach if possible. If they find that the esophagus and stomach are too far apart to connect at this time, then they will at least clip the fistula and schedule a follow up procedure to fix the esophagus at a later time when he is larger. Either way, this procedure should give us the ability to start feeding Miles breast milk through his stomach tube. Something that he definitely needs!

That’s about it for now. I’ll post more pics and videos this week as I have time…and I’ll post an update next week after the surgery.
Please keep both babies in your prayers. Thank you so much for everything. We love you all!!

D&B

Happy Birthday Boys

Hmmm…This “Daily” Dose of the Dizons has somehow turned into a “Weekly” Dose. I do have good intentions of keeping this updated more frequently; it’s just been one of those weeks and I think you all understand.

So today marks the one week birthday for both of our boys! Jaxon Elijah Larry Dizon and Miles Andrew Allen Dizon were born Tuesday, December 1, 2009, at 2:51 pm. Jaxon came into the world at 15 3/4 inches, weighing 3lbs 1oz. Miles, on the other hand, came in at 15 1/4 inches and weighed 2lbs 6oz. It came a lot sooner than we ever could have expected, but we’re so happy they’re finally here.

So far both boys are doing well. Both are receiving excellent care at the NICU. Jaxon came off the respirator yesterday, and is now breathing 100% on his own. Bethany was able to hold him for the first time today, which was such a blessing. Pics and videos will be uploaded tomorrow. Tomorrow they plan to start feeding him breast milk through a tube, so hopefully he’ll start gaining weight very soon! He’s definitely moving in the right direction.

Miles is doing well… Much better than he was earlier in the week. The first day he was born, we found out that he had a couple of issues that would be requiring surgery before he’s able to come home. For starters, he has a condition called Esophageal Atresia, where his esophagus isn’t connected to his stomach. It’s something that 1 in approximately 4500 babies have, and the causes are unknown (although it can be common with preemies). There is a surgery that will be performed to connect the esophagus to the stomach, but we need to get Miles 3-4 times his current size before it can be performed.

Secondly, Miles has another condition called Coarctation of the Aorta. This is when part of the aorta is smaller than it needs to be in to regulate blood flow from the heart to other parts of his body. It was very frightening when I heard about this issue, but the more familiar I’ve become with it I now know it’s a little more common than one would think and it can be repaired successfully with another surgery.

The last issue Miles had was due in part because of the esophagus issue. Since he was on the high frequency respirator for a couple days after birth, the air was being pumped into his body but he wasn’t able to pass the air normally since his stomach isn’t connected to the esophagus. What this resulted in was his stomach getting full of air to the point where it could not be released. On Friday night, they ended up performing a gastrostomy (tube in stomach) to release the air pressure. Fortunately, it was a success!! Since the procedure, Miles no longer has the air built up in his stomach…and the releasing of the air has given his lungs more room, and he is now breathing perfectly with normal room oxygen. His lungs are good and the doctors think he may be ready to come off the ventilator in the next day or so!

That being said, he still has a ways to go. The tube in his stomach will be used for feeding until he is big enough to have the surgeries. The first surgery will be to fix the esophagus and the second will be the aorta. But the prognosis for both is very good, which is very comforting to both mom and I.

We’ve had so many ups and downs this first week, and we understand it’s probably going to be like this for a while. We’re learning to just take things one day at a time, and to continue trusting God regardless. We’re definitely optimistic, and hopeful that we’ll have our boys home sooner than later.

If all goes well, we’ll probably have Jaxon home closer to his due date (2/12/10) and Miles will be sometime after that. Possibly next summer, but it all depends on how he does with the surgeries!

Please continue to pray for the boys. I’ll post more pics and videos tomorrow. I’ll also do a better job of updating more frequently.

Good night and God Bless!!
D&B

Thank you for visiting!

Thank you for visiting our page.  Through this blog, I hope to communicate updates for family and friends regarding our twin boys Jaxon & Miles, who were born prematurely on 12/1/09 at 29 weeks and 4 days.  I will also upload photos and videos as I am able to. Finally, I hope to put into writing some of our thoughts and emotions as we journey through this experience. I know we’re in for a ride, and I hope you’ll join with us. Bethany and I are so blessed to have wonderful friends and family, and we thank God for you all every day!