Tuesday, November 30, 2010

Beating the odds

We just came out of Brody's procedure and it was the best case we could expect. After going over every scenario in our minds and hearing that the doctors thought we were headed toward surgery we were pleasanly suprised by the amazing news that the obstruction is just swelling caused by his reflux and it is pretty likely that he will not need any kind of surgical intervention. Brody truly beat the odds today!! Go Brod!!! We haven't been this relieved and happy in a loooooooooong time.

Monday, November 29, 2010

They knew mom needed a laugh

When I stood up today after holding Brody for 3 hours I learned that the warm feeling I had earlier was several pee pees all over my shirt. The kid must have known I needed a laugh.

And today we learned that Cam is a boob man!

Brody is now at room air temp and maintaining his body temp. Cameron is in clothes for the first time and on cannula for breathing all the time now on close To room air quality oxygen. Making tons of progress on everything but the problems at hand...throat and eyes.

Tomorrow Brodys procedure is at 10:30. At least we'll get some answers

More anxious waiting

Brodys scope is tomorrow. Everyone says not to go on the Internet but just like I had to self educate in Cameron's situation last week I had to do the same for Brody. Aware that I would see the good,the bad and the ugly I started researching acquired subglottic stenosis...the ENT believes this is what were dealing with. There are varying stages which would determine the severity of surgery but we wont truly know what we're dealing with until tomorrow. Very nervous and just wish all of this could be over and my kids could come home and be happy babies.

Sunday, November 28, 2010

New Pics

Brody napping with Mom and Dad



Brody'd favorite time


                                                Baby's first fat!

Brody's first clothes! Thanks Aunt Kimmy!!!

Mom put me in this pom-pom hat just to humiliate me!





Cam sleeping 

Brody sleeping




Cam's first bottle!!!!

So he may not have gotten the "sucking" part down but he sure did enjoy it

Staring at me. The boy knows his mommy

Cam peeking around again. Looks like his eyes are feeling better  :  )

Saturday, November 27, 2010

Status Update

Dr. Kaiser the Retina Surgeon came on Friday to look at both of the boys eyes. Brody was right where he wants him a week after surgery. To our surprise one of Cameron's eyes actually was as well. The other eye had not progressed but had not regressed as much as he would have liked. There was a specific area that he could see was susceptible to pulling at the retina if his ROP were to move in the wrong direction...we were not willing to take that risk. Per our request for Avastin, a drug not FDA approved for this application and considered experimental on babies, he came armed with it in his back pocket. Origionally a chemotherapy drug, Avastin has been used for years on eyes but on grown adults for diabetic retinopathy a d macular degeneration. Only since 2007 has it made its way into NICUs. With the long term and potential systemic reactions unknown we had to align a waiver releasing liability but after doing our homework we believe that the Avastin could save Cameron's vision. We struggled for a while deciding what was best for him but we are confident and feel good to know that we have done everthing in our power to give him all of the chances at vision we could. I would have taken him anywhere and paid anything for the kind of hope that fortunately for us Dr Kaiser and our miracle drug were able to give us. His first follow up will be Wednesday.

Tuesday is our next hurdle. Brody will be going into the OR with the ENT surgeon to see what is going on in his throat. They will scope him and if it is something that can be treated right there they will do what they have to then. Still very nervous but learning how to do my research, be prepared and Knowledgeable but also let the boys call the shots and let things happen before I start worrying about every possible scenario. One day at a time!!!

Friday, November 19, 2010

Just when we thought we could exhale

I haven't updated much this week as I wasn't really feeling up to it. Things took a drastic turn when the boys eye exams came on Wednesday. This week both boys were Stage 3 ROP with Plus Disease. Before I had time to process what this could mean the retina surgeon from Wills Eye was there taking both boys into laser surgery. Usually the severity of disease state that the twins have is not seen until 36-37 weeks....they are 32. They have a very fast moving aggressive form of ROP. There is around an 80% chance of success in Brody's case...they were reluctant to give us numbers on Cameron as his was significantly worse. They are czlling it Rush Disease because of the speed with which they were affected by it. If this surgery doesn't stop it the next stage is pre retinal detachment. I can't think of an adjective that exists that could possibly explain how scared we are. Brett and I both really lost it this week. We're not sure how much more we can take at this point.

I held Cameron for 4 hours straight today and didn't want to let him go. When they open their eyes and look at me (and I know they see me)- that is not a feeling I will ever take for granted. Please please please let them be okay.

Monday, November 15, 2010

My big fat baby!!!

Ok maybe fat is an exaggeration but Brody just hit 3lbs 1oz!!!! Ahhhh I love it!!!!

Pushing 3 lbs

So since my last sad email things have calmed. Cameron is progressing beautifully. He started sessions of oxygen only at a low flow yesterday and is already up to 4 hours on his cannula, 8 hours on the Cpap and so on. He does GREAT on just oxygen! If he keeps this up by the end of next week we may be starting to bottle/breast feed. I can't believe it! He is 2lbs 12oz. His next eye doc appt is Wednesday so we will know how quickly his ROP is moving and if he might need laser surgery to correct the issue.

Brody is 2lbs 14oz!!! 3 lbs here we come!!! He is doing great since going back on the vent-fortunately his lungs look great but his throat is still pretty swollen. They will probably look to extubate again after Thanksgiving. Right now we are working on getting him bigger overall so that his airway will grow as well and hopefully open up enough for him to breathe on his own. An ENT will be there when they decide to extubate to scope him to make sure that there is nothing wrong with the actual structure of the trachea/vocal cords that might be causing a problem. The doctors seems pretty confident that it is just swelling but as with everything else, these guys are just so unpredictable. Inevitably this will delay him coming home pretty drastically as he is already a few weeks behind his brother and we are planning to wait a few weeks still to give him the chance to catch up.

After a long overwhelming trip to Babies R Us today I figured out the diaper equation. 10 diapers a day per baby=20 diapers total * 30 days a month WHICH BRINGS US TO A GRAND TOTAL OF 600 DIAPERS A MONTH!!!!!!!! AHHHHHHHHHHH!!!!

Maxin and Relaxin


Daddy time with Cam

Chill

Munchkin!

Little Brett
Mommy and Brody time

No Picutres Please!

What does a baby have to do to get some privacy around here?! Sheesh!

The hands actually wrap around a finger now!

Thursday, November 11, 2010

They say this experience is a roller coaster ride. I can handle the ups and downs but today I feel like we completely jumped the tracks. Brody is back on the ventilator after trying to take him off 4 times in the last week. His throat is so swollen that they could barely get a tube intended for a 1 pound baby down it. He is doing great back on the vent but he has been through so much. The plan now is to sit and wait. We are waiting for him to get bigger and outgrow the edema in his throat. They won't even think of trying to get him off the vent again for 3-4 WEEKS. While I was having a breakdown from that news Cameron stopped breathing twice and had to be bagged as he wasn't coming back. Both boys now have OD tubes instead of their normal feeding tubes. They will bypass the stomach and feed them into their duodenums to attempt to minimize their reflux.

Every time I feel like we can finally exhale for the moment all of this comes back ten fold. I feel silly for having started to prepare for their homecoming. I'm scared of what will be in 3-4 weeks when they finally try to take Brody off again. Every time they have a bad episode I'm afraid they won't wake up. I try to be optimistic every day but today I am terrified.

Sunday, November 7, 2010

Brody is 2lbs 11 oz! My little porker : ) Cameron gained too and is now 2lbs 6oz. The boys are having their first eye exams on Wednesday to screen for retinopathy. We are hoping that Brody will continue doing well enough to come off of his vent again Tuesday. Cameron is scheduled to have his central line removed on Thursday as his antiobiotic treatment will be up.

I painted their room this weekend too. It felt good to spend so much time in their room and give it some color and begin to prepare for the boys to come home.

Tuesday, November 2, 2010

Wiped Out

I am beyond exhausted after the last few days. Cameron has been doing great off the vent for the last few days. He is 2 lb 4 oz. Brody is 2lbs 7oz but has been a challenge respiratory-wise. His vent slid out 3 days ago so they tried him on CPAP (oxygen support through nose cannula), he didn't do so great. His bloodwork and chest x-ray yesterday told us that he was probably ready to try again. They extubated him and watched for a few hours but learned that while his lungs were ready to do the work his throat was swollen from the vent rubbing and causing an obstruction in his airway. After giving him 3 doses of epi and steroids it was apparent that it wasn't going to work again. Today, after 4 doses of steroids over the last 24 hours we tried again. He has now been intubated/extubated 3 times in 3 days-poor kid. He again wasn't doing so hot right away, I left crying because it was really a lot to handle. 40 minutes later the nurse came to find me to let me know he was doing better. Crossing our fingers and saying more prayers that this is the last time and that Brody is comfortable with his new gear.

Tomorrow I have a photographer coming in to catch some shots of the boys. When I first thought about the idea I couldn't imagine wanting to document this scary time but now I realize how important it is. This experience is a part of who they are and when they are older and towering over us all, they will want to see their very small beginnings.

Finally decided on a color for their room. Hoping to get it painted this weekend and start to get ready for the day that I get the fantastic news that they are coming home...whenever that may be.