Thursday, June 17, 2010
So first off I will apologize for the delay in writing an update as this blog is titled "Pregnancy - Male point of view" and I found out that that sometimes means we are really busy with the kid!
So the second surgery is done (phew). Jen and I were expecting it to be another 4 week stay in the hospital and we were really surprised when they told us best case scenario is 6-7 days! I guess as they get bigger and stronger the body recovers easier... Jane made it home in 6 days which was amazing. She did really well this time around - from the smile she gave us as they took her to the surgery prep room to the first smile we got when she was recovering, the entire time she was a "best case scenario".
*** We want to give a special acknowledgment to Auntie Nicki, Oma, John Bowman, Cyvil, Lindsay King and all of the friends and family that donated blood and/or got their friends to donate. I think Jane used 1 unit post surgery and now there will be plenty available for all of the other kids (and adults) that need it.***
Getting her home after this second surgery was really cool, but it definitely took some new adjusting to because for the first time since her birth there isn't a surgery looming and the medicine intake for her has decreased heavily... Therefore Jen and I had to find a new groove and a new routine to carry us through the next phase; well it only took a little bit of time and we have it down now: Eat, Crap, Play, Learn, Sleep and repeat. Jane's routine isn't far off from that either ;)
We discovered that Jane loves the zoo. It's pretty cute to see her face light up at the animals she likes (meerkats, pandas, peacocks) and it's especially cute seeing the Mad Dog Mulligan faces when she sees an animal she doesn't like (hippo, sea turtles)... For those of you that haven't met Jane yet or don't know her she is definitely a very visual baby (as are most I assume), but anyways she takes in every inch of her surroundings and the zoo is no different for her. I will say taking her to the zoo takes much more time because of the amount of people that stop us to comment on one of the outfits Jen has her in or just to see her smile or whatever reason it may be. It takes longer, but it's fun to see people interact with her... except why do every single one of them try to touch her? That's something I never noticed before I had a kid for sure...
So now that we are in a new groove I will be able to update the blog more frequently; keep looking out for them. As for her health right now she is doing great... all the stuff they hoped would happen post surgery has happened: she is breathing easier... her eating doubled and continues to... her color got much better and the only thing we are waiting on now is for her to get taller... that's the only area she is behind in. Other than that things are really good and we are very relieved to have 2 out of 3 surgeries behind us. It's been the best 8 1/2 months of our lives and we have loved every minute of it with this kid.
Having a child with congenitive heart disease isn't supposed to be easy and we are fortunate enough to say that in relative terms Jane has made it "easy" for us. Her strength, humor, and positive disposition made it so that we could focus on what we needed to do to get this far and know deep down that this tough kid was just taking it all in stride - living my and Jen's mantra of "What are you gonna do? It is what it is." She amazes us daily and keeps us laughing non stop and I can tell you this: between the three of us our laughs we sound like a cackling bunch of animals.
Maybe that's why she enjoys the zoo so much?
Thursday, February 18, 2010
So watching the Olympics last night, I learned two things: #1 The U.S. is fun to watch when we deliver on all the promises and prevent embarrassing media coverage... and #2 Shaun White was born with congenitive heart disease just like Jane! He had two open heart surgeries before he was 1 yr as will Jane - pretty cool! I was already a fan but just became an even bigger one.
So last week Jane had a catherization procedure (Cath Lab) where they basically put her under for a few hours, ran a line into an artery and were able to take pictures of her heart to see the things that won’t show up on a normal echocardiogram so that they know exactly what to anticipate for the next surgery. To be honest, taking a trip back to Rady’s for another procedure had neither Jen nor I sleeping well the night before... no matter how much time you spend there you just never get used to it. The procedure overall went really well; they said that everything that was done in the first surgery is doing exactly as it should, they were very pleased with what they saw and there are no new issues to deal with as we progress towards surgery #2. The only negative post surgery issue that came up is that it completely tossed around her sleeping schedule and she has been up at night pretty much every day since... we are slowly getting that in control at about the same speed I get out of bed in the morning...
The next surgery will probably happen sometime in March/April. This will be another major full open heart surgery to do some plumbing fixes on the heart and make permanent fixes to the stuff they did in the first surgery... Jen and I are both having a hard time coming to terms with the next surgery as Jane is obviously more aware of us and alert to her surroundings, but we understand the necessity of the situation and we have had the benefit of seeing how tough our Jane is.
Man she is so much like her Momma...
Other than that she is finally figuring out how to hold up the enormous thing on top of her shoulders (the pediatrician said her head was in the 75th percentile for her age) and we are starting to see her neck as well! She “talks” non stop, smiles at everything, laughs when Jen kisses her and she loves her time at night with me. (She told me so).
We have been keeping a good routine with seeing as much family/friends as possible and attempting to catch up on rest when we can but that part’s not that important...
Well that’s about it for now, I'll update again when I know the dates of the next surgery and thank you to all of you who are keeping Jane in your thoughts. She’s a really special girl, and we are looking forward to holding her hand through all of this and then watching her grow! (Not her head, that can stay where it's at).
Wednesday, January 13, 2010
The Holidays and Jane.
So first I need to apologize for the delay in updating everyone on the current happenings in the world of Jane. I guess no news is good news, right? So the past month or so has been really great. The holidays were a blur as I’m sure they were for everyone. We spent Christmas Eve at Pop's and Jane got clothes. Christmas day at Momma’s and Jane got clothes. The next week Jane and Jen were up in the Bay Area with her family and yep, Jane got clothes... well kind of... she got a Princess Leia costume and a Star Trek onesie - So it looks like her future high school struggle begins now. ;)
Jen and I have both been doing really well; work has been crazy as usual but seriously if it wasn’t called work I’m sure none of us would call it crazy. Jane has been really funny lately and I realized how happy I am to have her because she loves to listen to the guitar and (more importantly) she loves it when I sing out of key to her! It truly takes no effort to make my voice sound out of key either because that’s naturally how it comes out. So with the Star Trek onsie and me teaching her to sing out of key things are really looking up for her.
She is really starting to mimic everything we do with our mouths, which is adorable because... well it's just adorable.
This past weekend we had a Politically Incorrect Party for my 30th and our friend Wallis’s 25th (again) birthdays. Those that know us know that we all like to laugh and what better way to do it than to dress up in a very politically incorrect outfit and enjoy making fun of stereotypes all night... I was a drunk, gambling "Native American" (Indian = feather) and Jen was a Sprint customer service rep (Indian = Dot). Jane wore a sign on hat that read, "Now that I'm safe, I'm pro-choice". It was at this party I realized that Jane is gonna be a handful... man she wants to be involved with everything that’s going on! If there are people around then no nap time for Jane, she wants to be a part of everything. She slept in till 7am on Sunday so maybe she was hung over...
Once again now to being serious: Jane is growing! I think she is 10lbs 4oz now and eating like a champ. Her last doctor appointments have all gone well, so that means the surgery served its purpose and hopefully we can make it out of swine flu season until the next one so that the grandparents can actually visit her in the NICU. I'll keep everyone posted on when the next one comes along...
Other than that all is well and thanks again for the support, Jane loves it!
-Ryan, Jen, and Jane