What a day

Most people would probably say that the best day of their life was the day their kids were born. I feel guilty saying that for us it was not, as that day was terrifying not knowing if both boys would make it and where this journey would take us. Today I finally feel like I can sigh in relief and celebrate my Two Tough Twins.

This morning we had their Bris in the NICU. Grandparents and great GPs shared in our joy. The cantor mentioned today being their "spiritual birth" and the term his close to home. I always say that eventhough their birth date was 5 months ago, their adjusted age is 6 weeks... in my eyes they are 6 week old babies. Their spiritual birth gives them a clean slate. It was a very emotional morning and we finally shed those happy tears that most are used to when a child is born.

The boys could not have looked any cuter in their adorable outfits.

Cameron's Special Night

Our sleepover at the hospital with the munchkin

Daddy and Cam cuddling

Cam sleeping on mommy in bed

                                           Laughing with Daddy this morning

Cameron is ready to go! We are just waiting for Brody's surgery now. Not sure when they will boot Cam out of there but he has passed his hearing exam, car seat test and is ready for the road!

Off to our sleepover!!!

My sentiments exactly Brody!

Mama I'm Coming Hoooooooome!!

Brody looking at his bears!!

Cam in his bjorn. Can't wait to be at home with him in it

Brody's last throat surgery is scheduled for Tuesday. Cameron is probably ready to go home now but they are working with me and he will probably go home a few days after Brody's surgery.

We have a mohel coming to the hospital Sunday for the boy's Bris! Immediate family only. We are super excited to be able to participate in some typical baby stuff and not just monitors and alarms. Cameron Mark is named after Brett's dad. His Hebrew name will be Melech, meaning 'King'...very fitting for his personality... Cam is a little ham! Brody James is named after my grandmother Joan. His Hebrew name will be Yehuda meaning "Blessed"...which he is very.

I am completely behind on phone calls, email responses, etc. If you have recently called and I haven't gotten back to you, everything is great and I will as soon as I have some time. These little people are keeping me incredibly busy... and I have nurses now... how are we going to do this without them...ahhhh!!!!

Pics

Brody Seeping

Cameron looking around

Cam's favorite spot... up on the shoulder

Brody and his girlfriend GiGi

Cami Cupcakes is coming home!!!

Cameron should be home some time around the end of the week. I have butterflies just typing that. He still has to keep up the volume on his feedings and pass a car seat test (has to sit in the carseat for 1.5 hrs without desatting) and Brett and I have to do an overnight stay with him in a private room with nothing hooked up to him. They will work with us coordinating between getting the last things done in the house, Brody's yet to be scheduled surgery, CPR class Wednesday, a quickie Bris in the NICU for Cam (quickie and Bris shouldn't really ever be used in the same sentence but it's the truth) and a laundry list of other things I would like to take care of before my man is home.

We are beyond excited but of course anxious about juggling Brody still being in the hospital with having the fat man home. We will figure it out. I can't wait to give him his first bath at home!

Anyone want a mean cat and a house pooping dog?? Just kidding of course but our furry kids could pose a potential problem. We have to give them tons of love and attention too so they don't feel pushed aside.

Our baby pics... Brett's to come...

Cam is starting to look just like me as a baby...hi Jas in the background

                                               Especially once I started packing on the pounds

Brody and Cameron's Pimp Pad

Since it will be some time before we can have people in the house due to germs and the boys compromised immune systems I thought I would give a sneak peek of their awesome room.

                                                      Stars all over their ceiling

 Those bears are wearing the costumes that were too big for the boys on Halloween. Frames to be filled once we are able to get professional picutres done

 Navy comfy chair... Not a good color for a kid with reflux

Just a few of their many stuffed animals. Their teeny tiny footprints from when they were first born will go in the frames in the back

We have to fill this closet... these boys are growing out of their clothes fast!

Pics

                                                                 Baby in a Bjorn

                                                                     Lil Peanut

                                                            Look mom...no tubes!

                                                Cameron looking at Brody for the first time!

                                                        Brody looking back at Cameron

Home on the horizon???

Cameron is taking all of his feedings by mouth now...and a few extras when he screams and demands them. He is one big boy at 8lbs 3oz. He ripped his feeding tube out of his nose. I guess he was telling us he wouldn't be needing it anymore. So now he has a little boo boo on his cheek from the tape ripping : ( rolled over 2 more times, hung off of me for an hour happy as can be in his baby bjorn, and sat in his bouncy seat looking out the door of his room at the passers by. If he keeps this up he is outta there very soon...as soon as he recovers from hernia surgery. We will probably find out when that will be tomorrow.

IMG_0030.JPG

In all of this excitement I feel sad for Brody. I'm thrilled and scared at the same time to bring Cam home. I'm nervous about not being able to be with Brody as much as I will need to be home with Cam and at e same time concerned I won't be able to fully enjoy Cam knowing that Brody is still in the hospital. Jewish guilt or just me wanting to give them both equal love, attention and Mommy time. So excited for this day that we've been waiting for so long for but overwhelmed too. Scared to leave the safe walls of the NICU and am going to really miss the family and support system that we have there.

It's almost time to bring one of my babies home. Butterflies.

Milestones

Cameron has now taken 3 whole bottles and rolled over twice!! Brody's still chillin waiting for his next throat surgery and once he gets his "button" in his tummy instead of the tube he currently has he will be able to be more mobile. Once Cam is consistenly taking every bottle we will schedule his hernia repair and once recovered from that will be going home. Not sure when that might be, but it's on the horizon...

What Cameron thinks of the NICU

Brodys first thumb suck

Brody and his GiGi Giraffe... his best bud

Cam's hair is growing in!

Cam't rockstar outfit from his cousins

Our best day yet

So sorry I haven't blogged since Brody's last procedure... I have been with the boys every minute I'm awake. Dr. Solomon was able to laser the redundant tissue in Brody's throat!!! He was very conservative this time around as not to damage other nearby structures. Brody is already doing sooooooo much better. He is on the lowest respiratory support he has ever been on and much more comfortable and happier. The intention is to go another round of surgery to get the rest of the tissue that is causing a problem for him. Meanwhile we tried a bottle with Brody...I was so nervous as he only has one working vocal chord right now, but he has been doing great! Speech therapy has been working with us to suggest ideal positioning to combat his feeding challenges but he got the hang of it right away! Everyone is really impressed with him. Brody is so observant and watches everything.

Cam is almost 8lbs. He's a beast! He is doing better every day with his feedings and getting so strong. He is also watching everything and everyone's every move (which is amazing for us... to see that he sees!) He does awesome with tummy time. He pushes himself up and moves his head from side to side taking in all of the sights. When he gets his bottle he started grabbing and holding the bottle a little. He has a pacifier that is attached to a duckie stuffed animal and likes to hug his duckie to keep him in his mouth too. He's doing everything a newborn would do (remember their adjusted age is only 3 weeks) except for full feedings by bottle but he'll be there any day now.

We will still be in the hospital for a while yet but it's a whole lot easier when we have days like today.

Sorry for my pity party email the other day. I'm still very stressed of course but don't ever want to come off self depricating. I am thankful for what we are fotunate to have and not often concerned with what we don't, but it all just got to me.

Cam seems to be doing much better with his feedings and Brody is going in for his scope tomorrow. Tomorrow is their Popop Mark's birthday so I know that we have an angel on our side watching over Brody for this very important procedure. Please please pray again for Brody tomorrow.

I also want to put some other babies in our thoughts. Our friend Ella is facing some cardiac challenges and our friend Parker recently had a GI surgery at St Chris's as well. Oliver, Channing and Jibreel are kicking butt on the outside...always thinking about them thriving  and their continued success at home...  A shout out to all the babies that have touched our hearts over the last few months.

On a more positive note...

I almost forgot the very good news that Cameron's pulmonary hypertension is gone!! That is REALLY good news!!!

I also would like to mention that I have had thank you notes from all of your generous shower gifts in my bag to write for the last two months with the intentions of getting to them everyday. It is no exaggeration to say that the many hours I spend in the nicu are completely consumed with the boys and solving their daily medical mysteries. It is on my mind all of the time to properly thank you all for that wonderful day.Until that time comes... the boys and Brett and I love you all very very much. Thank you, thank you, thank you.

NICU-itis!

I was starting to enter this zone of the alone. All of the fun of shower was 2 months ago now (2 months!), the boys room has been done for week, their drawers filled with clothes they have already grown out of, and toys are together and placed throughout the house. We have seen 3 rounds or more of babies come and go from the nicu and everyone else is getting on with their lives. The boys are still having serious issues and there is no end really in sight. I am having a severe case of NICU-itis and feel like I'm jumping out of my skin. I feel like our boys are getting lost in the mix and have spent the last few days fighting once again for them to get the care and attention that they need. Brody intially got better after the surgery but since back at Abington his throat problems are back.  After identifying what I thought caused the problem we are now waiting for the swelling to hopefully go down again. He is getting scoped in the OR Tuesday again and if he is a candidate for laser they will try to give his airway some relief that way. We are just at a loss with him...I have spent all of my energy trying to figure out tricks to make him more comfortable. His healing from here is what it is.I have done all that I can.  I am hoping that the recent decrease in Cam's feeding volume and the addition of Mylicon gas relief drops will get him more comfortable, reduce his reflux and get him on the road to eating on his own. Transfers are always a nightmare and unfortunately due to the poor communication between practitioners and facilities, the boys are the ones who suffer. Let's just say that with all of this going on approaching 44 weeks... I have lost it...beyond lost it.

Then today my first NICU friends stopped in to see me. Barb, Rasheen and Yvonne all have their little munchkins at home yet had the time to stop by to see me. Unfortunately I couldn't interrupt Cam's feeding as he finally got on a roll to see them but they left me a goodie bag. Each item was so thoughtful and made me cry as I opened one after another. It was perfect timing to be reminded that we are thought of. Brett and I have been pretty closed off from the world for 5.5 months now. We have watched seasons change yet still the routine remains. Sleeping/eating/functioning has not gotten any easier as today is just as stressful as the first days after they were born... correction-more stressful. The baby weight is far gone (and a lot more) and the pumping came to an end this week due to stress.

Again we had a big breakdown yesterday and today pulled ourselves back together and went and held our babies. Cam actually took 2 decent size feedings in a row and Brody's stridor (the noises he makes because of his small airway) was quiet while he was happy on daddy's lap. There is something about when it's just the four of us and the doors to our room are closed and it is calm. It is the cure to healing my soul and I hope that sense of calm repairs the boys too.

I love you Brody and Cameron-you are my life.

Back to Abington

Yesterday was 43 weeks... or 3 weeks old. Brody was tranferred back to Abington last minute earlier today. I am looking forward to only having to go to 1 NICU and not have to feel divided with my attention. Brody is doing great with his new tummy in place. We still have a lot of respiratory work to do..ENT is coming Friday to see if his airway has improved since the surgery. Brody lost a good amount of weight as he hadn't eaten in almost a week after surgery...by tomorrow he should be on his full feedings and we will fatten him up real fast.

Cameron's feedings have been going very poorly and he is easily aggitated. His milk has been winding up in his nose and anything that makes it to the stomach usually comes up. He was doing so well last week... we're not really sure what happened but I hate seeing him uncomfortable and in pain during feedings again. We added yet another reflux med to the mix and will be trying different agents to thicken his milk. He is 7lbs 2oz, Cam has a very mild case of pulmonary hypertension and an Atrial Septal Defect that is not a problem now and hopefully won't be... just keeping an eye on it.

There are so many times when I wish they were home and able to do the "normal baby" things but I accepted that this is our normal a long time ago. While I would love the cute baby pics and to have my kids playing together in the bathtub and be blowing raspberries on their tummies, the most important thing to me right now is that they are happy and comfortable...no matter if that is in a nicu or at home. All of that other stuff is to give us the warm and fuzzies as the boys will not remember spending the first few months of their lives in the hospital. If I do my job right as their advocate and fight for them every day I hope that this is all just a memory to Brett and I one day. My men will have a challenging first few years but they are the luckiest kids on earth to have us as parents who are willing to do anything for them. I plan on teaching them to define themselves by the strength they have shown me and taught us. I have found my purpose in life... it's Brody and Cameron.

135 days in NICU with no end in sight... but who the hell cares anymore...the boys will be fine!!!

Fat man Cam

                                      His cute little outfit and Juicy hat that he puked all over

                                           Brody after surgery, wide eyed and observant like usual