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. 






Wednesday, March 26, 2014

21 months old

Today the babies had their final Synagis shots. It's a bit surreal that they have had a full two seasons - and even more surreal that in a few short months they will be two years old. How time flies!

Tonight they are fighting off some sort of cold and are super grumpy. We've pulled out all of our tricks (Nosefrida's, saline, cool mist Humidifier, Snuza's, baby monitor, Nebulizer et al, etc) and hopefully things calm down or we will be in for a long few days/nights. 

***
At 21 months the Little Dragons are moving fast. Here are their favorites right now:




Maisie:
Book: Five Little Monkeys, Where's Maisy, & Good Night, Little Dragons
Song: "Baby's Getting Up" by Caspar Babypants 
Words: her newest words have been pine cone, stick, necklace, "Hop on Pop". 
Toy: Doors. She has officially mastered using the doorknob. Oh, she loves the great outdoors. 
Food: cheese, banana, veggie straws
Animal: dog, bear, monkey, giraffe
Time of the Day: tooth brushing at night night
Activity: trying to melt things on the sunroom pellet stove when we aren't looking (sunglasses were the first and hopefully only victim)
Color: blue or purple
Clothing Size: 9-12 months
Shoe Size: 3.5 wide
Weight: 19 lbs
Height: ?
Number of Teeth: 11


James:
Book: Baby Beluga, or Good Night, Little Dragons
Song: "Baby's Getting Up" by Caspar Babypants
Words: his newest words are love, round, away, cone
Toy: ball, Tupperware container
Food: applesauce aka "bowl"
Animal: anything that "Roars"!
Time of the Day: playtime
Activity: dancing
Color: green or orange
Clothing Size: 9-12 months (though he can wear 3 month pants)
Shoe Size: 3.5 
Weight: 17lbs 1oz
Height: ?
Number of Teeth: 12




Sunday, March 23, 2014

Playtime



The Little Dragons have always liked to play together, but as James is getting more mobile things are becoming much more interesting.

Maisie used to torment James a lot more than she does now. She will often find a ball or toy for James to play with if he's in meltdown-mode, and Maisie doesn't pull his hair anymore. Actually, she prefers to pet his hair softly and say "nice, nice", give him hugs and kisses, etc. James doesn't know what to do with this affection and sometimes bursts into tears. 

James is happy to keep up with his older (by one minute) sister. He can get into more trouble and hold his own when battling for toys.


Today was the babies' first real bath together where they played and were able to splash and have fun. James doesn't sit well on his own, especially in the bath and Maisie is downright wild. We've tried a group bath one other time and it was more than chaotic - they both tried to drown each other and Jimmy and I were crowded on the edge, trying to separate them. Today they happily chased balls around the bathtub and were very sad when we got them out. 


The fact that the babies like to play with each other is perhaps the best thing about having twins. I don't know what having a singleton is like, or even having two kids close together. But I'll say this - our babies are very sociable and it has been fun to watch. Their troublemaking is interesting and sometimes I don't even have time to get a photo (like the time they emptied the entire box of Chex in the kitchen, had a breakfast free for all and smashed the leftovers to bits).  

***
I have to admit that this year, I'm a bit behind on the March for Babies.... but so are you! I'm the only person to donate to our team. I hope we'll at least get to $626 this year. Will you help us?

Walk / Donate today!

http://m.marchforbabies.org/s_team_page.asp?seid=2000992

Friday, March 14, 2014

2 years ago

It was 730 days ago when our lives were turned upside down and this crazy journey began. It was meant to be, perhaps. This was our plan. 

pProm happens to 150,000 women in the US every year and is a factor in 40% of premature births. 

pProm happens as early as the first trimester, and is survivable. 

We are a testimony to these facts. 

***



Everything about our lives is different today than it was two years ago. It's been worth it, and I wouldn't change it. While this path isn't for the faint of heart, it is guided by love and an overwhelming sense of staying determined for the best possible outcome. There's a lot to be said about the determination of the human spirit, and the will of individuals to overcome the impossible.

I'm sure one day we will see and feel "normal" again. But until then, we go on helping the disillusioned and the distraught, the families told that the only option is to give up their babies to save themselves. We work to show that another course of action is to do nothing at all but a simple course of vitamins and bed rest, and let the cards of life fall as they may. Let these amazing babies prove themselves and their fighting will and determination to us. 

We work to show providers that we are educated and informed, and that we will make the best choices for our families without being pressured by statistics. We work to build partnerships and better understand how to help fragile babies born too soon because of circumstances out of our control. We aim to bring hope. 

***

Through our pProm experience we have met so many amazing doctors, nurses, medical professionals, mothers, babies, families- without whom we would not be here. We continue to write this blog with hopes to inspire those with a pProm diagnosis, or those who wonder what the complications of early pProm and/or premature birth are. Thank you to all who read and continue to follow our story.