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