Saturday, April 26, 2014

March for Babies / 22 months old

Today was the 2014 March for Babies. We didn't reach our goal of $626 this year but I feel more enriched this year as we had quality time with our very best friends from our pProm and prematurity experience. 

We have met so many amazing people along this journey, and today we spent the walk with Jill, Grant, and her pProm survivor twins Croix and Koral; we saw our NICU BFF's Jen and Matt and their twins Lily and Liam, and Laurel and her son Weston. My parents and aunt walked too, and they helped us wrangle babies, push strollers, and keep items in check. 





What amazes me the most is how much the little dragons and their friends have grown in just a year. Even though the babies wore the same onesies from It's a Preemie Thing, they were at the end of the life cycle for the 6-12 month size. The older kids, with the exception of James are all walking and all over the place. They are talking and as cute as ever. The NICU where we all were connected seems to be such a long time ago. 

***
At 22 months old, the babies are very exciting to be around. I can't quite call them toddlers - it's something I have to get over, I guess. 

Maisie:
Book: Hop on PopWhere's Santa, & Good Night, Little Dragons
Song: "Baby's Getting Up" by Caspar Babypants or "mmmBop" by Hansen (don't ask...)
Words: her newest words have been full sentences like, "Go walk outside" or "what are you doing". 
Toy: cellphone. Ugh. 
Food: cookies, waffles, chex, beans  
Animal: dog, kitty, bear
Time of the Day: Night night
Activity: Walking outside
Color: teal, purple, or pink
Clothing Size: 12 months
Shoe Size: 3.5 wide
Weight: 19 lbs
Height: 29 inches
Number of Teeth: 11-12


James:
Book: Good Night, Little Dragons
Song: "Baby's Getting Up" by Caspar Babypants 
Words: James loves to say "ball" and short sentences related to ball, like "no b-ball", "love big ball", "play base ball", etc. 
Toy: Balls. He also likes Tupperware. 
Food: rice, beans, applesauce. 
Animal: bear, dragon
Time of the Day: anytime he can play with a ball
Activity: hugs and kisses, playing outside, or playing with balls
Color: green
Clothing Size: 9-12 months
Shoe Size: 3.5 wide
Weight: 16lbs 10oz
Height: 29 inches
Number of Teeth: 12





Tuesday, April 22, 2014

Easter weekend & surgery update

This past weekend was a busy one. The little dragons came to my work to attend their first ever Easter Egg Hunt - which was fantastic. 


They were up bright and early with me and helped us get a head start on things. As always, the staff and residents at Harvard Square loved seeing the babies and they couldn't believe how much they've grown. 


They enjoyed coloring, exploring, playing with plastic eggs, and of course the egg hunt itself. Maisie's fast and furious with getting around now- she's so quick that if  I'm not careful, she's out the door or around the corner in no time. I was lucky to have lots of extra hands and eyes on Saturday! James of course, is obsessed with anything resembling a ball. So, for him the eggs worked and he threw Easter eggs all around the building and chased them as far as we would let him. Another fun game James figured out was "explode an egg" where James would throw the plastic egg filled with candy at full force on the concrete and watch or explode into a dozen pieces. The other children were not amused but James was thrilled! He's got two strong arms and crazy muscles to prove it. 



On Sunday we relaxed in the morning and went to visit GGP in the afternoon. Jimmy's whole family minus a few aunties away at college were there and so it was very busy. The little dragons had lots of fun playing and eating, and were as cute as could be. 


***
James's upcoming surgery is on the minds of so many people. We are thankful that everyone is thinking of us and keeping his well being in mind. 

It might be helpful for me to clarify a couple of things about the surgery. 

1. The tethered cord release is more routine. The arachnoid cyst removal is more complicated. 

2. What is an arachnoid cyst? Would it be better to leave it alone?

An arachnoid cyst is a cyst that forms on the surface of the brain or spinal cord. It is filled with cerebrospinal fluid and covered with cerebrospinal matter and collagen cells. It is a congenital disorder that most often begins in infancy; it is most likely related to James's Intraventricular hemorrhage (IVH) that he experienced in the days after birth. 

The image directly below shows an example of how James's extradural arachnoid cysts formed, a progession of sorts. The bottom image is what his cysts look like today - the only exception being that James has five vertebrae that are impacted. 

If his cyst looked like the middle or top images we may have waited to operate. However, his cysts are pushing on his spinal cord and the vertebrae and presumably impacting James's movement and flexibility. 

3. Will it come back?
Our neurosurgeon doesn't believe so, but only time will tell. 

Tuesday, April 15, 2014

MRI take 2

Yesterday we were up, in the car, and checked into Rocky Mountain Hospital for Children at PSL before dawn broke. After much waiting, lots of consent forms and meetings with anaesthesia and radiology, James was sent in for his sedated MRI and CT Myelogram. 

After only two hours we got the call that everything was done and James was in recovery; they didn't need to do the CT Myelogram after all as the MRI was able to get what three neuro-radiologists believed was a great view of James's arachnoid cysts and his tethered cord. 

We went to the PACU and met James in recovery, where I was pleased to find one of his former NICU nurses taking care of him. She did a great job and so did he; after an hour we were on our way across the hospital grounds to meet with Dr Osterdock. 

After some discussion and a review of the scans, our surgery was set for May 1st. It will be at least four hours to accomplish both procedures, the cysts being more difficult and the tethered cord being a bit more typical. 

It's difficult to put into words exactly what the cysts look like; but if you could imagine something the shape of a green bean sitting right along the sheath of the thoracic spinal cord, total length 5 centimeters. Its placement is putting severe and direct pressure on the spinal cord itself and that is one reason we have to operate. 

Black marks show the top and bottom of the cystic mass, 5 cms in length. 

Our neurosurgeon has to make incisions in 4-5 vertebrae to essentially access the cystic body and drain it. There are some other considerations she will take to ensure there are no complications with his VP shunt. 

Following this procedure Osterdock will move to the lumbar spine, where she will make a small incision in a vertebrae to access the fatty tissue that has attached to the spinal cord and detach it. This will allow the spinal cord to float freely as it should in the spinal canal.

James will be in the hospital for 3-5 days, primarily for pain management. Following discharge James is only prohibited from contact sports following the surgery for 3 months - meaning as soon as he's home we will have to watch Maisie closely but he will be back to chasing balls and getting into trouble pretty quickly! 

The hopes are that James will have better range of motion and less long term mobility issues related to these complications by operating now.

***
I know it might seem strange; but if I had the choice I would prefer to do emergency surgeries. Less time to think about the "what ifs" and all the logistics involved. 


Tuesday, April 8, 2014

PTSD

We aren't the type of people to wallow in sadness and defeat. But, it is important not to brush over the fact that with all that we've gone through, grief and trauma still exist.

The appropriate label is Post-Traumatic Stress Disorder, or PTSD. 

Certain images and moments will never leave my mind. 

•The day my water broke. The gush. The constant feeling that fluids are gushing - even now, years after the fact. 

•Bleeding from placental abruption; pints of blood and fluid and hoping that the babies would hang in there. People trying to relate but really having no idea. 

•The day I was in labor, and I was 27 weeks along. I was six months, and I thought I had finally made it to the third trimester. I was wrong. The nurses and doctors thought I was having growing pains and overreacting. They were wrong. 

•When James came out screaming, and they held him up for me to see. I wasn't prepared for just HOW small he was. I never saw Maisie when she was born. 

•The wink James gave me before he headed to the NICU with Maisie and then to another hospital a city away. 

•The sleepless nights as we waited for Dr Hanson to call us. He never did. 

•Seeing Maisie for the first time and not believing how small she was. Holding her for the first time and her tiny fingernails. Feeling her sneeze. I could hold her in the palms of my hands.

•The worst night of our lives. When James was in organ failure, actively dying and we asked the doctors to do everything they could to save his life. They argued with us and asked us how we wanted to let him go. We refused and refused. We couldn't give up. He wasn't ready. We slept at the hospital in the room where babies pass away and barely slept, cried so much our heads were underwater, and visited every few hours to check in. He made it through the night. Dr Hanson came in that morning and told us he could stabilize James enough for us to go home and sleep, so we did. And thankfully, he turned a corner and his organs began to function again. 

•The times when our babies were dirtballs and they coded and called in all of the experts in the hospital to figure out their medical issues (or not). Their skin took on a blue / gray pallor and they were clearly not impressed with the attempts to bring them back. 

•The frustrations learning to feed, and being unable to breast feed.

•When we made great connections with other families and could share in their frustrations and celebrations. 

•When we had the green light to go HOME. 

And so on, and so forth. The battle with prematurity continues. Both babies were in the hospital last year. They have delays. They are ahead of their actual ages in some areas. They are amazing. 

***
PTSD is something that I continue to face. I feel like we are living with our hands and feet in the earth and are definitely grounded from our experience. We take nothing for granted. I know that we are very lucky. I know many families that haven't been afforded the opportunities that we have. They will live with loss forever. I can't even begin to imagine how that feels or what their PTSD looks like. We just need to acknowledge that this is a huge part of the pProm and preemie experience. 

Honesty helps us heal. 

"Hardships make us strong. Problems give birth to wisdom. Sorrows cultivate compassion. Those who have suffered the most will become the happiest."
-Daisaku Ikeda



Wednesday, April 2, 2014

We are Maisie

Here is a glimpse into the world according to the Little Dragons. 


1. Maisie + James = Maisie (she doesn't understand that they are individuals. Therefore, they are both Maisie. Occasionally James is "baby"). 

2. The best food is applesauce (aka "bowl", because you get a souvenir bowl that is fun to chase around. The next best food is a GF snockerdoodle cookie, followed by floor food. 

3. The toilet is a great place to play. So is the trash. The dishwasher is okay, but even better is an off-limits cabinet or room. 

4. Dinosaurs say "Nay". So do horses. Horse rides are the best!

5. Twin ESP exists. We promise!

6. James can chase a ball around ALL day long. Maisie can find trouble ALL day long. 

7. Night night happens after "eat" and "teeth", and "book". 

8. There is a Maisie / Jamesie "Night Night Song". And there are insta-tears, every time. 

9. Maisie calls these celebrities "Daddy": James Hetfield, Raffi, and Borat. She can also categorize Facebook picture postings by "eat", "baby", "mommy", and "woof". 

10. James tracks miles each week chasing his balls through the house. 

11. The little dragons will "Roar!" on command when reading their favorite book Good Night, Little Dragons. They are very smart and know how to recite parts of many books.