Friday, September 9, 2011

I'd like less excitement please.....

August 22 2011

So much has happened in the past few weeks, I've been wanting to write, but for some reason I just haven't had the time....imagine that!

Grady and the trip to the ER- August 9

For a few days prior, Grady had been more fussy, he was spitting up a whole lot more through his nose and it would be curdled. I also noticed that on Tuesday all day long he would fall asleep while eating, which is his favorite past time, and he was pretty lethargic, when he did fall asleep, I could hardly wake him.  I sat on the couch at 8pm holding him rocking him back and forth just crying.  I had this motherly instinct something was just NOT right.  But maybe I was overreacting, maybe I was making it up, maybe I was just paranoid because of Cullen.  I couldn't lose Grady too.   I have GREAT intuition, I hate when I doubt what I feel....but I'm SO worried with Grady....I just don't know what I'm doing anymore.  

Thank goodness Jimmy didn't listen to me.  He called the pediatrician and we waited for a call was about 8:30pm.  Thankfully it was Grady's actual Doctor on call that night....he knew his background (and most importantly, knew how crazy I am!)  He called back and informed me that since Grady was just 6 weeks old, that he was lethargic and that I saw a large difference in his personality I needed to take him to the ER....why did I doubt myself, why did I think they would tell me to just come in tomorrow?!?!  

I took him to the ER and was seen by the pediatric hospitalist within an hour or so from the time I left my house.  Dr. Smith was from Children’s National just like the NICU doctors.  She checked Grady out, agreeing with me that it mostly sounded like reflux, but wanted to take an abdominal x-ray to check things out.  Grady had blood drawn and was also seen by the ER doctor as well.  According to my Facebook status updates, Grady and I were “Hanging out in the ER” at hour later I posted he was being “airlifted to Children’s National in DC.”  Well, the x-ray revealed that he possibly had a blockage in his intestines, and if it was in fact a blockage he needed to be close to a pediatric surgeon.

Once again, thank goodness for good friends.  It was midnight and I was trying to figure out how I was going to get some clothes to me at the hospital before being flown to DC.  One of my good friends had her phone near her while she slept and said she would drive to my house gather my things that Jimmy got together and brought them to me....with about 20 minutes to spare before the transport team got to the hospital.  

As usual for me, everything was surreal.  At the same time, I think I was in denial of it all.  I ACTUALLY thought that I would just drive him to children’s in the morning when Dr. Smith said he needed to be in a facility with a surgeon.  REALLY?!?  Once she told me he was being transported by helicopter it hit me, sort of.  

The Pediatric transport team arrived and prepped Grady for transport.  More blood was taken, an NG tube placed, (mainly so Grady wouldn’t aspirate in flight it also doubles as suction), EKG leads, a temperature monitor, O2 saturated monitor and IV placed.  Oh, and don’t forget about his cute little yellow earmuffs.  He was then swaddled, and placed in the transport incubator.  At this point I thought he’d be crying because he was so hungry....but he slept.  The helicopter ride lasted about 50 minutes, making our arrival to DC at 2:45am.  Talk about a whirlwind experience.

Children’s National is an AMAZING hospital.  The NICU has 54 beds designed as private rooms or ‘pods’ (4 babies in one large room.)  More than 1,300 nurses work at Children’s...Grady’s nurses took care of him and just one other baby per shift.  

The arrival was quite a blur.  I know at some point another x-ray was taken to be compared with the one from earlier that evening.  Surgical rounds started early and they came and looked at Grady and his X-ray.  I was told “you will not be needing my services”  YAY!  

I was so happy to see a familiar face walk in the room after surgical rounds.  Dr. Stone, Grady’s original NICU doctor was there and he was assigned to Grady.  I must say, Dr. Stone is amazing.  Completely down to earth, passionate about what he does, direct and honest.  With all that has happened the past 9 weeks, he’s just been wonderful.  I’ve emailed with him and spoken on the phone and speaking to him is like speaking to an old friend.  To have this relationship with him means the world to me.  

That first full day, Wednesday, Grady was given a blood transfusion and placed on 3 different antibiotics.  His hematocrit was only 21 which explains why he was so sleepy. They did blood cultures Wednesday, Thursday and Friday.  He was finally allowed to start eating again that Wednesday evening, he was a happy boy!

SO what the heck happened, right?  Grady’s blood tests showed that once again he was severely anemic.  As when he was born, the blood that he did have went to the major organ systems, Brain, Lungs, Heart and Adrenal glands....his GI slowed down, which is why his stomach wasn’t pushing food through at a normal rate, why he was spitting up curdled milk. His bowels also showed lots of air because they too were moving very slowly.

Overall the treatment and care Grady received at Children’s National was AMAZING.  I am SO thankful for the support I have been given by my family, friends and even strangers.  Once again, I’ve been blown away by all the people who care so much.  Being flown to DC with Grady and holding in all the emotion was difficult...but just knowing how many people cared & were concerned, truly helped me so much.  

Friday Sept 9th...

I’ve been through such lonely times the past 11 weeks, really it’s been a lot longer when you count the pregnancy with the boys.  The past  2 weeks I’ve really been missing Cullen.  
I tried to take some pictures of Grady in the pose that Cullen was in for most of his pictures.  I even brought out Cullen’s little hat from the hospital.  I’ll never know if they are identical for sure....but after taking some pictures...I just know they are. If not, they sure do look so much alike.  

I really like being able to look at the picture of Cullen and compare him to Grady.  Parts of me feel like I should be able to drive to the hospital and just see him again....take a better look at him. See what he looks like and smells like one more time.  I hate that I just feel like I can do that....then I realize I can’t. He’s gone. Gone forever.  

I drive by the funeral home often and all I can see is the chimney stack.  Part of the time I HATE that I agreed to have him cremated.  How could I have done that to him.   I HATE looking at that chimney.  

I belong to 2 groups on Facebook for parents of one surviving TTTS baby.  It’s helped SO much knowing there are others that feel pretty much just like me.  In fact 4 other TTTS  little babies were born 11 weeks ago today.  I hope Cullen has been able to meet Scarlett and Abigail where he is.  I hope they don’t feel pain. I hope they all have been able to open their eyes and see there brother and sisters here on earth.