See Ya Michigan

Cam in his little spaceship

We just found out that we're heading home tomorrow afternoon. Cameron and Brody will be back together again and mom and dad will hopefully find their sanity again once home. Cam prob isn't too far away from discharge...just has to get this eating without a feeding tube thing down then it's home to meet his furry brothers...maybe by his due date???

Home for New Years

Cam got the approval today to fly and insurance gave us no argument this time. We will either be coming home Thursday or Friday... it can not come soon enough!

Brody's lung opened up after a whole ordeal this week but good news is that it opened! He has been successfully off the vent for a few days now and we are hoping we can put that whole chapter behind us.

We can not wait to have the boys home and together in the same NICU, see Kito and Mazel, sleep in our own bed and see our family. Home sweet home in a few.

Just let me breathe!!!!

Cameron is still on the vent as there was some trauma to his throat when extubating him last time...they are trying to get him off as soon as possible so that hopefully we can go home once he is cleared by the retinologist.

Brody has been off the vent for 36 hours but has a partially collapsed lung and is laboring. They are doing everything possible to keep him off but if he requires more support will have to go back on and we will have to restretegize from there.

We are losing steam but keep finding a little more to keep going. We are functioning on empty but functioning...barely. Not sure how much more we can take but trying to keep it together for the boys.

Just want the boys together and to be home with our families for the new year. Miss and love you guys

The generosity of others

In addition to other parents offering us their cars and to bring us home for Christmas dinner we have been given blankets, stuffed animals, and books for the boys.  The other day I noticed that the cafeteria was selling honey baked hams and asked if we could still order a meal as we were in from out of town and staying in hospital housing. We were lucky that they could set one aside for us and we went to pay for it they refused our money. I am constantly overwhelmed by how nice people are here. Looks like we will be eating honey baked ham for the rest of our stay as they gave us enough to feed 12 people!!

Cam had a hard time coming off the vent today... hopefully tomorrow

Brody without the vent!!! Feel like I'm seeing him for the first time again since he has been on the vent for sooooooooo long.

So the second surgery didn't have the same optimal results but we are still optimistic and feel fortunate with the overall prognosis. If all continues to move in the right direction Cameron will be sighted. His second eye was stage 4b- the retina was pulling much more than the right eye and was twisted indicating that once all of the tension was released there would in fact be distortion but we're just not sure to what extent. There is an area of concern that will be watched as he gets bigger that might have us coming back to Michigan in 4-6 weeks...a little tweaking in the years to come is expected though. His vision will continue to be a work in progress but we're thrilled to be told that we have the opportunity to continue that journey.

As we sat in the lobby waiting to find out if our son would be blind or sighted there was a little girl there, probably about 2, to see Dr Capone also. She Was blind or pretty close to it. It was a reminder that no matter how challenging our obstacles are we still must count our blessings for every little miracle along the way.

Cam after his second surgery... my little bug

Brody was extubated back at home today. Grandmoms are watching over him vigilantly. He has been off of his vent for 3 hours now. So nervous for him this time as there is so much riding on it being successful at this point. We are cautiously optimistic as always and just hoping that this time is the last time.

All of our love from beautiful Michigan

Flight for Sight

Cam's private leer jet

                                 Cam's awesome flight nurses and ambulance ride

We've been in Michigan since Saturday night. I was so nervous for the transport considering before this Cameron was desatting with something as simple as a poop-now we were going to put him in 2 ambulances, a plane and change his environment, doctors, care, etc. To our surprise...he did great with the commute. Looks like I'm going to have ton take him for car rides once he's home and fussy cause he really loved the bumpy ambulance ride. Our flight nurses were amazing. He had a hard time settling in at first but has been pretty good since. When Brett and I finally got to the hospital housing we are staying in (it is no Ritz Carlton!) at 2am we had hand towels to shower with and some skanky sheets that we were scared to sleep on. Lovely welcome. Oh btw, we are on 13 mile Rd-just 5 miles from Eminem's 8 mile.

The hospital is absolutely gorgeous-state of the art in every way. Getting comfortable was still hard as its new and just not as 'cozy' as being win our NICU family at Abington. As time goes on we are getting friendlier with the staff and finding some amazingly generous parents. One family offered us their car to go get groceries and another wants to take us home with thtem for Christmas!!! Renews our faith in human decency. Truly heart warming.

So Cam's eyes:
Monday world renowned retina surgeon Dr. Trese diagnosed his right eye as 4a in the ROP staging process...the best we could as for if we have to be in this situation. Statistics and early prognosis are in our favor with 4a. The surgery went smoothly and the anatomy looks good after surgery. Cam has seemed irritated and swollen but not too too uncomfortable. He came off of his vent 16 hours after surgery. The second eye is being looked at today by Dr. Capone who also travels the world and writes on the topic. We are very fortunate to have this level of care. There was some bleeding in that eye Monday which is ok but ey couldn't get a good view of it.

Brett and I both had complete nervous breakdowns a few days ago...we rally just needed to get out all of our fears and frustrations and it was a pretty low moment for us but we are back to our resilient hopeful strong selves now. This experience is beyond explanation. Horrific and rewarding all rolled up into one. We are truly better people with very different perspectives about what is important in life. These boys have changed who we are to the core.

Stay tuned for updates.

Cam right before surgery...a little swollen from his travels and fluids but still such a big boy

Cam after his first surgery... Arrrrrrgggghhhhh!!!!

Off to Michigan

After learning that Cameron's retinas will in fact detach we are now awaiting final arrangements for our travel plans to Michigan to Beaumont Hospital to meet Dr. Michael Trese and Dr. Antonio Capone. They invented 'lens sparing vitrectomy' which they will do on Cameron next week. He will have surgery Monday and Wednesday. We don't know how long we will be out there. Brody will stay at Abington with the grandparents and Brett may go back and forth as needed while I live there with Cam. He will be traveling on a Leer jet to meet the best retina surgeons in the world. We tell him he'll be high styling. We know very little about his outlook but know that he is in the best hands possible and we are doing everything possible to give him all of the chances to see that he deserves.

Please thinks of Cameron often and pray for him.

4 lbs!!!

Cameron hit 4 lbs last night!!! We got moved to a more private room for the boys as they surely have earned some extra space for all of us. They started physical therapy a few days ago and are doing great with it...Brody was really loving sitting up today. We play music in their room and brought in toys and mobiles for them to look at. Both of them have been in open air cribs for the last week. I got to hold them both at the same time for the first time earlier in the week too.

Finally... we get to celebrate!!

I can't thank you all enough for bringing all of your love and support to our shower today! It was truly wonderful to see everyone and such a special time for me to finally be able to celebrate the boys. Coming home with all of their toys and filling my house with their things is an awesome feeling! Everywhere I look I see Brody and Cameron and can't wait until they are here.

Thank you! Thank you! Thank you!

Lots of Love,

Brett, Melissa, Brody and Cameron

This is too familiar

Brody was telling everyone through his low settings and high sats today that he was ready to get that freakin breathing tube out already. Nervous from the last few failed attemps I didn't go in until after they were done. Unfortunately I didn't wait long enough because by the time I arrived his pulse-ox bottomed out and everyone rushed around him...again... and he was quickly re-intubated. I of course fell apart. I have to rest on the great report from ENT the other day after his bronchoscopy revealed that his trouble breathing was from the swelling only and no scar tissue or other structures which would require surgery were necessary. Brett and I were on cloud 9 after that amazing news but I just didn't understand what went wrong today. It seems like every other part of his body reacted to the steroid blast they gave him but still not his throat. So we're back to more watching and waiting.I just feel so bad that he's so behind Cameron at this point. I'm so sad that he can't come out to play and I can't hear his little cry or start to bottle or breast feed him. I just want him to be experiencing all of the same positive things Cameron is right now. Both boys have their fair share of challenges at this point but I just want them to be comfortable.

If Cameron continues at this rate we could have him home by the end of the month! Brody will clearly be in the hospital for quite some time after. Whatever he needs and at whatever pace we will be patient and wait for him to come home. As they get bigger it gets more and more difficult to leave them there. Their cribs are built (thanks to Popop Bruce) and their rooms should be completed by the end of the weekend for the most part... they just need my two little munchkins home and happy.

69 days old/in NICU. 34 weeks, 2 days gestation.

Eye Exams and Injections

So the boys had another follow up eye exam...they will be watching very closely until they are "term". Brody's eyes were regressing beautifully...very happy with his results so far but remember, we don't count this things as a win until 40-50 days out.

Cameron's eye that was injected last week looks fantastic. We are cautiously optimistic that his vision could possibly be saved in his left eye. The right one which was at an acceptable stage on Friday has progressed rapidly in the last 5 days. Dr. Kaiser believes that the retina could detach in a matter of a few more days so we acted quickly and injected this one too. We are hoping and praying and crossing finger and toes that we see the same regression that the left eye has shown. He will be checked again in a week.

Brody is doing great and is almost down to room air-still through his vent but seems like the steroids they gave him this time in combination with a higher dosage of Prilosec (for his reflux) may have done the job. Hoping he has a successful extubation any day now. Cam continues to be a boob dude. That has been a pretty cool bonding experience for us. So proud of him!

Love love love my little men

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.

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.

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  :  )

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!!!

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.

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!

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.

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.

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.

Halloweenie

Today was the Halloween party at the NICU! Cameron looked soooo cute in clothes...purchased from Buildabear as nothing else would fit these little guys. Getting into clothes would have been too stressful for Brody today as he was a little more touchy. We will get his pics in his costume this weekend when he's feeling more up for it. We still had time together for Kangaroo care so it was a great day either way.

Btw, the "poop" that we are speaking of was some leftovers on the window of his isolette from the "airborne movement" the day before. Nasty.

Airborne Movements

Today I finally got to hold Cameron for the first time since his infection. He got so big! He did great and other than a few desats he made it for three hours...just mommy and Cam. I learned my first lesson in projectile poops : )

Tomorrow is their Halloween party!!!! I can't wait to see them in their itsy bitsy costumes!

This weekend I will be trying my hand at painting for the first time in attempts to get the boys room ready. This should be an adventure!

Both Boys Hit 2 Pounds!!!!!

2 lbs and Daddy Kangaroo Care

Brett had the chance today to hold Brody for his first time! Brody did great and loved a little chest hair for a change : ) He did so well that he then was able to do kangaroo care right after with me as well-a total of 3 hours out of his isollette and maintained his body temp...of course with the help of our body heat-a big accomplishment. Brody is 2 lbs 1 oz-a major milestone weight...Cameron isn't far behind at 1 lb 15.5 oz. Once they hit 2 they typically grow much quicker and are bigger and stronger and more significant progress usually follows. Cameron had another transfusion as his hemoglobin was low so he didn't get to participate in all of the fun...hopefully in a few days though.

Prior NICU Mom Meeting

Our NICU!!
http://www.philly.com/philly/health_and_science/20100810_Evolving_techniques_improve_preemies__chances_of_survival.html

Today we went to hear a past NICU mom speak about her experiences with her son born at 23 weeks and 5 days. We didn't know what to expect to hear about her son's development as success rates for preemies born before 24 weeks gestation are typically very low. I also was not expecting her to bring her son, now 4 years old. When I walked in and saw Sam I cried before I could introduce myself. I could not believe that the adorable, talkative, funny little boy in front of me was born 1lb 6oz. We have a looong way to go yet but it was very comforting to have met Sam.

Hoping to hit our 2 pound milestone any day now!

Cameron's Surgery Success

We made some great progress this week with his infection-all of his cultures have been negative but he needs to stay on some pretty strong antibiotics for the next 30 days... that need to be administered intraveneously. While he was still considered to have the infection they didn't want to implant a pic line or any foreign body as they are known to harbour bacteria. In the meantime they placed IVs in every vein they could find in his tiny little body and blew them all out. This morning we were told that he would need to have surgery to implant a central line to administer the antibiotics and take blood, etc. The pediatric surgeon from St. Christopher's came up to perform the surgery. They cut a small incision on his neck and accessed the "jugular" vein and burrowed the implant in and back out of his side. This should stay in place for the next month so that the stresses that we have gone through on a daily basis regarding piclines and IVs should hopefully go away.

Both boys are 1lb 13oz and some change. They are looking like babies and outgrowing their "preemie" look. It's hard to keep in perspective how small they still are because compared to how small they were a few weeks ago they are really big! We have to get over the 2lb hump! Both boys have also entered the respiratory phase where their chests tighten and they need to give them "inhalers" in their vents. Also typical for preemies-nothing out of the ordinary. The boys will not have fully developed lungs like the rest of us until they are 6 or 7 but most will outgrow their respiratory issues at that point.

I try to always end on a good note...changed both of the boy's diapers today...I am shocked out how much poo those little boys make...shocked!

Cameron earlier this week-so freakin cute sucking on his vent like a paci

                                Cameron again, a little swollen from his meds, more pics of Brody to come