Wednesday, May 28, 2014

Laminectomy


Tuesday morning we checked in to Rocky Mountain Hospital for Children at PSL for James's "elective" laminectomies - removing the extradural thoracic arachnoid cyst and untethering his lumbar spinal cord. 



James was a star. He was not upset about not eating or drinking, and was very calm and collected about the whole thing. He was very mature - definitely not the behavior you'd expect from an "almost two" year old. James flirted with the nurses and even got a new blue ball to play with while we waited in pre-op.  

The surgery was scheduled at 11 and they got started right on time. I helped James through the beginning of anaesthesia, and then we all headed to the lobby to wait. Just after two pm we got the call that Dr Osterdock was finishing up and would meet us in the family waiting room within the hour. 

Our neurosurgeon is a very kind and intelligent woman. She doesn't have the ego of most surgeons and is glad to spend time working through details with you if needed. 

For James, she said his situation was interesting - which for us it isn't surprising, but apparently we're continuing to make waves in the medical community in one way or another. The cyst, which was roughly the size of my index finger in length and circumference, was very thick and fibrous rather than filled with cerebral spinal fluid; leading her to believe that its origins were from the intraventricular hemorrhage at birth. When she removed the majority of the cystic tissue the spinal cord, which had been severely compressed, sprung back into place. 

For the tethered cord she encountered more fibrous matter than expected but found everything as it should be. She isolated nerves and freed the base of the spinal cord from its bounds. She said everything looked wonderful and that both procedures were absolutely necessary for James's function. 

It is unknown when or if we will see a difference and how vast that will be. James went through a major back operation and will have significant pain for a while. Hopefully these procedures help. 

 ***

James was doing phenomenally well with pain control and only needing Tylenol. He also managed to stay very still for the first 24 hours, ensuring no sedation or restraint. Our neurosurgeon came in to evaluate and said if he continues to do this well, then we might be home Thursday or Friday versus the weekend. So, we started to get him up and moving Wednesday afternoon, and while he was uncomfortable it wasn't too bad. We FaceTime'd a few grandparents, visited with Daddy and Maisie, and saw some more family. 


Overall James had a pretty good day; when he wasn't sleeping he was eating or cuddling. Finally, he managed to sit independently on his bottom in the bed for a long time - this has never happened. He can w-sit, sit on a chair or sit on knees, but his spinal function was so impaired that he was very uncomfortable in this position. 


So where was Maisie during all of this excitement? She had a play date with her second cousin David. I hear they had a blast. Maisie then proceeded to go to the store with Daddy where she had an epic, dramatic, superstar meltdown over waffles which lasted through the store, the whole car ride, and then some. James must have borrowed all of Maisie's patience for this surgery, I tell you. 

Monday, May 26, 2014

23 months old

Time truly does fly by. While we are gearing up for surgery in the morning, we managed to have a very nice weekend with all of our family and even had some one-on-one time.



Auntie Ca and cousin Marri are on their way home to Seattle, but we had a great time playing and adventuring. Saturday evening was spent with my whole family and Sunday we celebrated the graduations of Jimmy's brother and sister. We were able to see every single person in our immediate family over the course of two days. 

***
We can hardly believe that the little dragons will be two in a month. It is surreal. They are small, but are growing and changing fast. They have a lot more temper tantrums now, and I guess you could call this the "terrible two's"; but I have a feeling we could be here for a while. 

Here are what the babies are into right now:



Maisie:
Book: Hop on Pop
Song: "Gummybear Song" 
Words: Maisie talks up a storm. New words include "avocado" and "applesauce", along with lots of beginning sentences
Toy: Violet
Food: cheese sticks, cookies, pancakes, waffles, avocado
Animal: dog, kitty, dragon
Time of the Day: anytime we eat!
Activity: playing outside
Color: blue or purple
Clothing Size: 9-12 months, maybe some 18 months but she can wear 6 month shorts 
Shoe Size: 3.5 wide
Weight: 19 lbs
Height: 30.25 inches
Number of Teeth: 14+



James:
Book: Baby Beluga
Song: "Baby's Getting Up" by Caspar Babypants 
Words: anything ball-related. His favorite phrases are "I love ball" and "hey dude"
Toy: Any kind of ball
Food: any and all food
Animal: dragon
Time of the Day: eating
Activity: playing with balls and being chased
Color: green
Clothing Size: 9-12 months, maybe some 18 months but he can also wear 6 month pants 
Shoe Size: 3.5
Weight: 17lbs 1oz
Height: 30.25 inches
Number of Teeth: 13+

***
We check in at 9am tomorrow and are scheduled for the Operating Room at 11am. We'll keep everyone posted on James's surgery. 

Maisie is slowly feeling better but it is a slow road. She definitely gets winded and needs her medication, but is weaning a bit on the oxygen (not really our idea - mostly hers - but her saturations are cooperating).






Thursday, May 22, 2014

Cousins

Cousin Marri is in town from Seattle. The little dragons have lots of fun when she is around and it's interesting to watch their interactions change and develop. 

Just a few months ago when we visited Auntie Ca, Uncle Da and Marri, she was helpful and protective but a little hesitant about playing with the babies sometimes. She is two and a half and loves Maisie and James. 


Now, just a few months later Marri is much more engaged in playing with them and helping out. She is a great role model and listens well, and together they all have a ton of fun. 





Technically they are only nine months apart, so when it's time for school they could potentially be in the same grade level. While the babies are doing great for their circumstances - you definitely see the differences in development when they are around full term kids. 


***
Maisie is feeling a little better, though she has to wear oxygen at home. We've been doing this at night only because its impossible to keep her in one place, or within a 25 foot radius of any tank. She's been keeping it on thankfully. We purchased a pulse oximeter that we are using to spot check her and hopefully wean the oxygen as she gets over the bronchiolitis. 

We are still planning on James having surgery Tuesday the 27th, followed by a five day hospitalization. 

Friday, May 16, 2014

Bronchiolitis v. 3.0

Maisie has bronchiolitis for the third time on just over a year. She goes downhill fast, and hopefully it won't turn into pneumonia or anything more severe. 

We spent last night in the PICU because of her illness. I told Maisie that if she wanted to have a "Girl's Night" we could easily go to a spa or a fancy hotel, but Maisie prefers to spend all of our hard earned money at Swedish Medical Center. 

She is doing okay but has a lot of respiratory restriction, oxygen requirement (1/2 liter for our altitude at 9,000 feet), and is on Albuterol and steroids to help open the airways and calm her inflammation. 

James is doing fine, of course, and this is always surprising to me as he spent over three months without amniotic fluid and wasn't supposed to have lungs; then after birth spent another three more months on the ventilator. You'd never know it today. He's pretty much over the upper respiratory infection he gave Maisie without consequence. James wasn't totally left out; he got a new ball from the lovely nurses at Rocky Mountain Hospital for Children. 



Wednesday, May 14, 2014

Needing a break

Immediately following the norovirus, the babies came down with a rough upper respiratory illness. They are coughing, sneezing, feverish, and feeling horrible. We've got all our usual protocols going to try to prevent this from getting worse. 

They really haven't been themselves for quite sometime and I don't blame them. Who would have the energy to run and crawl and play for hours on end?

Luckily, they are eating. And eating. And eating some more. One of the standard protocols following norovirus is to avoid milk products as they can exacerbate symptoms. So, we saw a window of opportunity to get out of bottles and felt that now would be a great moment with the norovirus and everything else going on. 

The little dragons have been officially off of bottles for a week and while they were only taking two a day to boost calories, the high calorie formula was impacting their appetites throughout the day. It also wasn't doing a great job boosting weight gain- just keeping them on their curve which is well below the charts. 

So besides feeling crummy the babies are eating us out of house and home. I'll give you an idea of what a typical bottle-free day looks like for them, meal wise: 

8am: breakfast- gluten free waffles or pancakes with agave, scrambled eggs, and apple juice water
10am: snack- full fat Greek Yogurt, fruit purée with agave, and apple juice water
2pm: lunch- stacked enchiladas with corn corn tortillas, ground beef, beans, cheese, salsa, and sour cream; apple juice water
4pm: snack- Colby or Pepper Jack cheese stick, fritos and/or chex, guacamole or cheese dip, apple juice water
6pm: snack- chex and a GF cookie, applesauce, apple juice water
7:30pm: dinner- Soup with Italian sausage, potatoes, onions and peppers; apple juice water

It's been interesting, to say the least, having two little dragons chase you around saying, "eat, Mommy, eat"- and you just... fed... them... ! But, at least they're hungry and having appetites with all of this sickness going on. It's a lot of planning, and as Maisie says: "Cook, mommy!"


Wednesday, May 7, 2014

A very long weekend




This weekend was much longer than expected. We didn't plan on having a free weekend since James was scheduled for surgery, but in the end we ended up having more than a week off because we all came down with the Norovirus.

Wer aren't sure where this version of Norovirus came from; but my bets are on either our trip to the Denver Museum of Nature and Science or our take-out Chinese food order. Both were firsts for our family and we intended to make the best of our last minute four-day weekend; unfortunately, everyone ended up miserable and is slowly recovering. 

Some of the highlights of our weekend:

1. The museum: the little dragons liked the dinosaurs and adventuring. 


2. Exploring our backyard: it was an awesome weekend to do so, and the babies were all over the place. We have a lot of spring clean-up to do and some baby-proofing to figure out, but we had fun. 

3. Baby obstacle course: the little dragons are all about turning our house into the most crazy obstacle course they could come up with. They spent hours playing with a new box of diapers, crawling on top of it and pushing it around the house. We were most impressed with James, who can hold a plank position on top of the box, crawl on top of it, and then crawl off the other side. He holds his own pretty well, and then is happy to cheer Maisie on when she does even crazier moves. 




4. Twin friend time: we had an awesome play date with our NICU bff's L&L at their home and spent the afternoon exploring their backyard. It's amazing to see just how far all of the babies have all come in just a year. Unfortunately we infected them with Norovirus without realizing it and are feeling dreadful about that. (We owe you a healthy play date, friends!)


5. The Norovirus was fast and furious: luckily we are on the mend but we don't wish this situation on anyone. So, we are staying in for a few more days to try to keep it contained. We had our first camp out on the living room floor and we "watched" our first movie (Beauty and the Beast). 

Friday, May 2, 2014

Postponed

James's surgery is postponed until May 27th. His amazing Neurosurgeon is out unexpectedly for medical reasons and while we are slightly let down, we also are firm believers that everything happens for a reason. 


The past several weeks have been so busy that we haven't had days off due to a busy work and social schedule, on top of medical appointments and therapy. It's been quite a challenge. I'm sure it will only get more complicated as time goes on but for now, I relish the days where we can sleep in until 8 am and when we have two days off in a row. This family is exhausted. 

We suddenly have an entirely free long weekend and the little dragons will be sleeping in and getting into some other shenanigans along the way. 

***
Funny things they are doing now:
•Maisie loves to stick small things- like bits of paper up her nose.
•James loves to moon-crawl (fast backwards) Michael Jackson-style through the kitchen. 
•The little dragons are all about smothering each other with hugs kisses and saying "awe" afterwards.
•Maisie hates getting her picture taken right now because she really just wants to steal your iPhone. 
•James has everyone convinced that all he can say is "ball" - though he knows about 50+ words, and is incredibly smart. 
•If you ask them their ages, Maisie will say one and James will say two. They will also answer "almost" (M) and "two" (J). 
•James dislikes most grass. 
•Maisie hates people to touch her feet. 
•The little dragons love daddy's guitars.