Wednesday, February 26, 2014

20 months old



Wow! The little dragons are getting closer to the terrible two's than I want to believe. Today they are 20 months old. But, being preemies they tend to stay in the baby / toddler stage longer than termie kids so we get to enjoy these times a bit longer. 


Let's go over what their favorite things are and what they are doing right now. 

Maisie:
Book: Five Little Monkeys or Good Night, Little Dragons
Song: "All the Single Ladies" by Beyoncé
Words: no, monkey, outside, teeth - she is learning new words by the minute. 
Toy: anything that James is playing with
Food: veggie straws or anything she can feed herself with a fork or spoon
Animal: dog, bear, monkey, giraffe
Time of the Day: tooth brushing at night night
Activity: walking
Color: blue or purple
Clothing Size: 9-12 months 
Shoe Size: 3.5 wide
Weight: 18lbs 6oz
Height: 28.5 inches
Number of Teeth: 10

James:
Book: Baby Beluga, ABC, or Good Night, Little Dragons
Song: "Baby's Getting Up" by Caspar Babypants
Words: roll, ball, roar - James can say all the main animal noises
Toy: ball, Tupperware container
Food: anything and everything exciting - variety is important 
Animal: anything that "Roars"!
Time of the Day: playtime
Activity: crawling and pulling to stand
Color: green or orange
Clothing Size: 9-12 months (though he can wear 3 month pants)
Shoe Size: 3.5 
Weight: 16lbs 5oz 
Height: 28.5 inches
Number of Teeth: 10

Monday, February 24, 2014

The MRI

After much insurance craziness we finally were approved for James's MRI and spent the entire day at PSL getting this milestone accomplished. 


MRI's are commonplace in babies with hydrocephalus. It is important to have a baseline to compare to when there is a potential shunt malfunction. When we needed a revision last time, the radiologist compared his CT scans to the head ultrasounds from BEFORE James had a VP shunt placed. I realize that the radiologist was no neurosurgeon, but he was unable to figure out that the scans would be inappropriate to compare to. For instance, he didn't notice that James had a VAD in his head in the ultrasound and a VP shunt in the CT - two totally different devices! So we ended up delaying our revision a few days and making several unnecessary trips to the ER. When we finally saw our neurosurgeon she took one look at the shunt and could tell that we needed a revision.

These types of errors are exactly why we have baseline MRI's in the first place. For the professionals to compare the "healthy" brain to one that might need a shunt revision. 

***
We were also looking at the lumbar spine to rule out a tethered cord. James has some slight dimpling on his lower back that was indicative of this - and though it was on the bottom of the list of things to accomplish I figured it was time to find out for sure.

***
We spent the whole day at PSL. We saw a few of our old friends (Dr Hansen and Dr Randolph) and tried to keep Maisie entertained although what she really wanted was to walk and run around the whole hospital. The scan was done under general anaesthesia and was to take an hour and a half. It took nearly three hours - and when we met with Dr Osterdock we were enlightened as to why. 


James did phenomenally but as per usual, he had a few surprises for us. 

He has a tethered cord, for which we will do surgery for in the near future. It is a minor surgery but we want to take care of this before it impacts his motor skills or bladder / bowel functions. 

He has arachnoid cysts along his middle (thoracic) spine, which are compressing his spinal cord. The origin of these cysts are unknown - it could be from his IVH or another cause. Our neurosurgeon has yet to decide how she will handle this finding. 

James's brain is interesting - not unusual for him but maybe for someone else. Osterdock wasn't worried but seemed intrigued. He has no Periventricular Leukomalacia from the Intraventricular Hemorrhage. We figured he would be in the clear but several doctors kept pressing us that this was the case (he only showed echogenicity and never any cysts). Also, the MRI showed an unusual shaped cerebellum and we aren't sure if this may be impacting his motor skills. His ventricles are doing fine and the shunt is working. 

So: in a nutshell our neurosurgeon is conferencing with a few of her counterparts about our Little Dragon's scans and we will reconvene next Monday. 


Wednesday, February 19, 2014

We love beeps.

The other night we had beeps for dinner. The little dragons LOVE beeps (aka beans). They have to be in whole form though, otherwise they are something unrecognizable and it isn't as fun.

The beeps were part of Jimmy's bison chili and the babies demolished their part. We nearly ran out of beeps. Between stuffing their faces with beeps and screaming "BEEPS!", they had a very fun dinner.

Maisie is very serious about her beeps. She still has a sitting beep, a throwing beep, and an eating beep- and she will sometimes trick you into eating the "sitting beep" (don't do it- it's a dirty, dirty trick). She also likes to smash her beeps into oblivion. 

James is getting into the beeps too. In the last month he has cut six teeth, three of which are molars. Teeth make eating a lot easier - especially when you don't have to gum all your food. 

The beep craziness all started earlier in the day. On our way back from James's Synagis appointment we stopped at the grocery store and happened upon the aisle where all the canned beans are. When Maisie saw the thousands of beeps she was extremely thrilled - possibly more than at the toy store. She and James happily talked about beeps until we distracted them with some other food items. People must think we are crazy - but at least the babies are cute. 

***
James now weighs 16lbs 5oz! Our weight gain crusade seems to be working. The next hurdle: a routine MRI of the brain and lumbar spine to make sure everything looks good. Unfortunately this has to be done under sedation. Luckily we will be in good hands as the lovely people at Kaiser have approved us to get this done at PSL through our neurosurgeon and team. 

***
We have some exciting news! We will be on vacation in two weeks... to Seattle to see cousin Marri, Auntie Ca and Uncle Da! We will also be meeting up with our friend/ pProm Advocate Brittani and her pprom baby Audrianna. Audri is tough as nails and has been through more than her fair share of complications during her NICU stay. Thoughts and prayers for a speedy recovery and quick homecoming would be greatly appreciated by her family. You can read her story here: 

http://www.bburns87.blogspot.com/

Tuesday, February 11, 2014

Ugh, insurance


Thinking about this last week the only thing that comes to mind is insurance. The good news is the little dragons have insurance. The bad news is that it has been a nightmare. 

We lost our Premera Blue Cross insurance and went to Aetna on February 1st. James went on CHP+ on January 1st and then was assigned to Kaiser Permanente February 1st. The main problem is Synagis and the little dragons have not received their shots to protect against RSV because of a lot of red tape. 

We are working with Kaiser for James right now and will hopefully be getting back to our old providers through Colorado Access on March 1st. Luckily the Kaiser thing doesn't affect everything - but it is a pain in the neck. 

We saw James' temporary primary doctor yesterday and it feels as though we are cheating on our amazing Dr Jim. There's just no comparing seeing a novice pediatrician when you've got a pediatrician / former neonatologist for a doctor. The doctor yesterday really had no clue and we can't blame him. I don't think he had seen many preemies, especially ones like James. James is a 19 month old with a difficult start, very complicated NICU stay, and a short list of current diagnoses and issues. He has overcome a lot - it's nothing short of amazing. So, visiting the pediatrician at Kaiser was a waste of time and hopefully we will be back to normal soon. We are so thankful we landed with Dr Jim and Greenwood Pediatrics from the beginning.

At least we found out that James weighs 16lbs 3oz. That was a plus. 

***
The little dragons are great at dividing and conquering. They have amazing nonverbal communication skills that verge on ESP and I swear that they use their talents to trick us as much as possible. 

Last night Jimmy was taking out the trash and I was trying to get changed out of my grimey work clothes. The babies had crawled into our room, and were heading towards the office (which is definitely not unpacked or babyproofed yet). 

Maisie was first and she was screaming like a banshee. James was not far behind. I managed to catch James and put him in the playroom across the hall, and went back for Maisie. She had maneuvered all the way back to the other end of our office and found her favorite hiding spot. By the time I had grabbed her, James was at the door and trying to sneak past me. They may be small, but they are FAST. 

I couldn't grab both of them so I settled on just Maisie and put her in the toy room - where she promptly shut the door on me. And then I turned around to find our bedroom door shut and James laughing inside yelling "door". Maisie promptly joined in.

So there I was, shut out in the hallway, with two babies in two different rooms yelling "door". 

Just another day in the life. 



PS - looking back I realized that Maisie always seems to be wearing these elephant PJs. We have several pairs as there are only so many styles of PJ's in 12 month fleece. Sometimes the babies double up in red fire engines, and sometimes in pink elephants. They don't mind, and either do we. 







Thursday, February 6, 2014

Collaborations

The little dragons are doing great. They are very into collaborating right now and love causing trouble together. It's pretty interesting to watch.

Monday we had their follow up eye exam and discovered that everything was great. They have no issues to be concerned with and we don't have to go back until 2015. Both babies were thrilled with this news. The eye doctor was just not very entertaining. 

We went back home and the babies were determined to not take a nap. They watched Jimmy clear the driveway and then proceeded to throw every bit of their lunch on the floor. Only Doritos made the cut. We are horrible parents, we know. After the Broncos lost the Superbowl the babies (especially James) only want to eat orange food. I don't know why but I hope this trend ends soon.

Tonight we were eating chili (continue orange food trend) and they did a great job eating and saying "bean". James even said "chili". However, they refused to eat without their hats on (it was below zero outside; who can blame them?). When I took their hats off Maisie kept saying "hot" and James gave her a crazy look and said "brrr". Unfortunately "cold" is not in Maisie's dictionary yet. 

***
The March for Babies is coming up in April and we are going to be in attendance again this year. We hope to play more of a role in the March of Dimes and help more families going through pProm locally and beyond. 

So many people find this blog when they are going through similar situations, or when they are diagnosed with pProm in pregnancy. They want hope. They want to know what the future may hold. They need help through the NICU stay and beyond. 

Through the support groups I oversee and our non-profit, we work with women and their families through the process of expectant management, providing moral support and guidance through a time when even their medical providers may have abandoned them as a lost cause. We try to give these women hope. Though we never know what the future may bring or how each story may turn out, we do our best to advocate for the women and babies involved. 

We were SO lucky. We want others to be lucky and educated about the choices they have. We spend lots of time and energy and love making these connections all over the world, helping those that need it. 

Please consider making a donation to the March for Babies Team LittleDragons. It is the research that the March of Dimes has done that has enabled our Little Dragons to survive their premature birth. They are the big picture. We are focused on helping prevent and decrease the 40% of preterm births due to pProm. Our work continues. 
Donate or join here: Team LittleDragons