Thursday, June 27, 2013

First birthday


If a first birthday was a summation of everything we've gone through in the past year, I'd say we accomplished just that. We needed to wrap up the year visiting our old friends at PSL and round out the year where we started - in the OR. 

The past few days James hasn't been himself. We saw Dr Jim, consulted with our neurosurgeon, and after two long restless nights and worrisome days our intuitions were confirmed: James's VP shunt was failing and he would need a revision immediately. 

We met Dr O at the Rocky Mountain Hospital for Children in the late evening on the babies birthday. The doctor and her team waited until after 8:55, his actual birth time, to take him back to the OR. The procedure was simple but with general anesthesia; his catheter was entirely occluded and replaced and Dr O confirmed that James had very high cerebral spinal fluid pressure in his head. 

He is recovering now and will hopefully be home tomorrow.

***

We can't do anything easy. But even with the tense situation at hand we tried to make the best of this amazing day: our little dragons' first birthday. We opened presents and visited the Downtown Aquarium, which was very impressive. We did some imagining at PSL and then stopped at Sonic for Strawberry Limeades (the last thing we had before the babies were born). We continued on the trend of the stress diet, where the babies are so caught up in things that we aren't able to eat. And after surgery, I am yet again spending the night of June 26th in the hospital with my baby. But this time, I'm with James rather than a city away, tense and too worried to sleep. 

***

Sunday we had a great birthday party. Luckily things were still going fine with James and the babies had a wonderful time. They were very social and demolished their raspberry gluten free cupcakes. They even made sure GGP got a taste! We feel very loved. Thanks to everyone who attended in person and in spirit. We truly appreciate it. 

Tuesday, June 18, 2013

Memories

This time of year has been heavy on the memories. A year ago tomorrow I checked in to Swedish for bedrest, hoping to be there for the long haul. The babies had other plans.

Last summer was miserably hot. We purchased a portable evaporative cooler to take the edge off and it was helpful. When Jimmy brought it home I remember being thankful for his insistence that we do something and guilty about my stubbornness. I was more concerned about managing our strict budget than my personal comfort. 

A few weeks prior to moving into Swedish, I had permanently relocated to the couch, propped up on my right side, after some scary bleeding episodes caught us off guard following the 24 week appointment. Luckily the babies were fine but at this point I'd been having issues with placental abruption for 8 plus weeks and it was taking a toll on my mental health. Bleeding with pProm is like dropping food coloring in water; it's not uncommon to lose a liter of blood tinged fluid or a half liter of frank blood. This is the normal course of pProm. 

Up until we moved into Swedish, I would be lying if I said I wasn't looking forward to monitoring and eventually meeting the babies. We had no idea what was to come, but we were determined to stay in it to win it. And that's just what we did.

***
The little dragons are changing so fast. James is gaining more mobility, flexibility, and strength. Although not quite sitting on his own or rolling from back to belly yet, these milestones are not far away. He does a great job with tummy time, reaching, his pincer grasp, and his verbal skills. 

Maisie is very mobile and is scooting, pulling to stand, and pushing her Infant Rocker around the living room. She's taken plenty of tumbles and scared herself silly too. With all of this progress comes a huge temperament and Maisie doesn't disappoint. She has monumental 'Maisie Meltdowns' and is very frustrated by anything that doesn't go her way. 


***
A year ago we never knew that this would be our life. But it's a good one, and we are so thankful for it. 


Wednesday, June 12, 2013

Leaf & Stick

When it is summer and nearly a hundred degrees outside, we find ourselves looking for creative ways to cool down. Our house doesn't have air conditioning or cooling outside of ceiling fans, and that doesn't quite do the trick when the babies are down to their diapers and still sweating. 

The other day we spent the evening outside under the only shady tree we have, which happens to be in the front lawn. We sat under the tree and watched the birds, listened to the sounds of the neighborhood, and enjoyed the slightly cool breeze. 

James was the first to venture out with me. After we'd been out a while, the tree dropped James a present: a tiny new branch with three leaves. He played with it and studied it closely for hours; pinching it between his thumb and fingers, twirling it, tasting it, dropping it, and examining it in every other way you could imagine. 

James did not prefer the grass as it was too scratchy for his liking. He did, however, like to gaze up into the heights of the tree and watch the birds return to their nest and fly around the neighborhood.

When Maisie came out, she plopped right down on the grass but did not feel compelled to crawl around. Instead, she found the pokiest stick in arms' reach and proceeded to eat it. I tried to pull off the rough edges and nobs, and she did a great job swinging it around and beating the ground with it when the stick wasn't in her mouth. 

After a while the winds picked up and the Cottonwood trees were causing me incredible allergies, so we went back inside and called it a night. James brought his leaf in and we kept it in a safe place, but Maisie discarded her stick in the yard in exchange for her hammer. 

***

The following day it was even hotter, and coincidentally the babies had made an unplanned trip to my parent's home in Conifer for the day. They had a great time exploring the property both inside and out, and met a few friendly neighbors who have heard and read so much about the little dragons over the past year.

The babies do so well adapting to new experiences and environments. We can't believe that they are almost a year old; and what a year it has been. 

Thursday, June 6, 2013

King of the mountain

Maisie is cruising all around. She can pull to standing on her own and get down all by herself. We are so proud of her. She is one determined little dragon.

After their bedtime bottle tonight, Maisie climbed out of her chair and had her mind made up that she wanted James's. This is a common occurrence. She wants what he's eating, playing with, his spot - you name it. James was not budging.

Maisie pulled herself up and started antagonizing James. They were jabbering back and forth as if they were discussing why Maisie should have that particular seat rather than James. Maisie started poking and prodding at James's limbs, grabbing his shirt, and trying her hardest to get him out of the chair.

But, as we've learned before, James is smarter. He had higher ground and essentially the advantage. Every time Maisie got too close he would let out a cry and kick his legs as hard as possible, swat his arms at her and knock Maisie over. And every single time, she fell over. 

Maisie cried a few times, but only from surprise. She isn't used to being challenged. She made her way around to the other side of the chair and tried to work that angle, but James used his quick high-five swat and kept her out of arm's reach.

Eventually they got tired of this game and it was, of course, bed time. However, it is fascinating to watch someone with brute power try to outsmart someone with brains. It's a pretty fair match; not all the time - but they get even. 

***
Today was a great day. Apria came and took every last piece of oxygen equipment away. Large tanks, portable tanks, pulse oximeter. Everything is gone and we have a lot more room now. We hope we won't need it but we have great contacts and connections should we need something oxygen related. What a great obstacle to have overcome!

***
Finally, a year ago yesterday we hit "viability", or the point at which US neonatologists and obstetricians will save a baby that's born weighing 500 grams or at 24 weeks gestation. There are exceptions to this but it was a milestone that took a huge burden of weight off of our shoulders. We were lucky to last three more weeks. 

Also, at our appointment a year ago, we finally found out that our elusive baby B was a boy! Due to the lack of amniotic fluid they had been unable to tell until 24 weeks, when James was positioned just right. 


Saturday, June 1, 2013

Save the Date

The little dragons' first birthday party is scheduled for Sunday June 23rd! If you'd like details, please email me. We would love to see you there. 

***
Maisie is pulling herself up on everything she can get to. Very fast and tenacious, she is also strong and determined. It won't be long before this little dragon is on the run! We are in trouble. 
James, meanwhile, is adding to his bag of tricks. He can high five with both hands, give kisses, shake his head "no", say lots of words and babble like its no tomorrow. His laugh is extremely contagious. 

Both of the little dragons detest Tom Jones. There's an old song called "What's New Pussycat" and they will both cry on cue if they hear it. My mom discovered this - go figure. It's the wailing part; they don't like to see anyone upset, and that's their impression of that song.