Thursday, February 17, 2011

Our Story

***I'm writing this post in the hopes of inspiring anyone and everyone to become a "Mircale Maker" for the Children's Hospital of Denver. Just $15 a month helps kids like Jillian. You can call :1-800-458-KIDS (5437) to donate ANY amount or go to their website . You can also text MIRACLE to 27722 to donate $10 instantly.

Thanks to Children's hospital our oldest son has a younger brother and a younger sister. Thanks to Children's hospital we can hold and hug all three of our kids.  Two of our three kids would not be alive today, if not for Children's Hospital.
Our oldest son Oliver was born in February of 2007, a healthy, perfect  baby boy. Fifteen months later, in May of 2008 our second son Athan was born. Shortly after birth we found out he had a heart condition that required surgery ASAP. He was trasported to Children's and had surgery at 5 days old and was home only 5 days later. While we were in the hospital with him, we talked so many times about how amazing this place is. It is so sad that a place like that has to exist, but we are so thankful that it does.
When Athan was about 18 months old we decided to try for one more baby. Fast forward to September of 2010- I was 23 weeks pregnant and we knew from a previous ultrasound that this baby was a girl- baby Jillian. Our family was going to be complete! But, the doctors came back with less than good news for us. "This baby has a heart problem," was the doctors exact words. Our world was turned upside down, once again. Three days later, we were in the Children's Hospital Cardiology clinic, somewhere we were already familiar with, thanks to Athan's condition. There, they did an echo on Jilly's heart in utero- which in itself is amazing- and diagnosed Jillian with Hypoplastic Left Heart Syndrome. This condition is absolutely fatal if not treated.
Jillian was delivered at Presbyterian St. Luke's Hospital in Denver on December 15th, 2010 and transported to Children's at three days old. She was only 5 pounds and 15 ounces when she was born, so surgery was a big risk for her. Becasue of her size, we were told to expect to be in the hospital for at least six to eight weeks after surgery. At six days old she underwent eight hours of open heart surgery, performed by the same surgeon that did Athan's surgery. We knew she was in great hands. She did well during surgery and we began the recovery process.
While in the Cardiac Intensive Care Unit (CICU) I am convinced that we had the absolute best doctors and nurses possible. At Children's they don't just take care of their patients, they take care of families too.
By some miracle, Jillian was discharged from the hospital just 2 weeks and 3 days after surgery. She has been home now for almost 6 weeks and besides some feeding issues is doing well. We are expecting her second surgery to be in the next couple of months. We are not incredibly excited about putting her through another surgery, but are so incredibly comforted knowing that she will be cared for at such an amazing hospital.

Thursday, February 10, 2011

Prayers for Another Heart Family

There is another heart family that we know of, but have never met. We heard of them through our most favorite nurse at Children's, Gill. Their little girl (I won't give out names, etc. because we don't actually know them) has the same heart defect as Jillian, Hypoplastic Left Heart Syndrome. Like us, they have a blog to keep folks updated on their little girls progress and I have been keeping up with it since we came home from the hospital. Today their little one went through the second of the three surgeries- the same surgery Jillian will be going through in the next few months. From everything I have read on the blog today, she tolerated surgery well and is in recovery.

Although we do not know this family, I feel very compelled to ask for prayers for their little girl. Please just say a quick prayer today for this family- and ALL congenital heart defect families.

Saturday, February 5, 2011

Time Flies...

When you're chasing after an almost 4 year old, a two and a half year old and have a newborn with some special needs to take care of...
I can't believe we've already been home for four weeks, as of yesterday. And what a busy four weeks it has been. I feel like we're finally starting to get back into some sort of a routine, although it definitely feels like there are simply just not enough hours in the day. Right now, life for JR and me is being lived in 2 to 3 hour blocks, constantly revolving around Jilly's feedings. It is hard and sometimes feels very taxing and almost confining, but she is continuing to make amazing progress (not to mention that when this all began we could only hope to maybe be coming home this week!) so we continue on. She is so, so, SO close to having the feeding tube removed for good. We really only have to use it for one or two feedings a day, unlike when we first came home and it was used with every. single. feeding. Still, we are counting every single milliliter she eats. It's so crazy to think that such a tiny amount can make such a big difference but it does. It seems so tedious, but whatever we're doing, it's working- Jilly is tipping the scales at a hefty 7 pounds 11 ounces these days! Yep, she is now roughly the size of an average newborn and we are SO SO proud of her!
Every week we have an appointment at Children's Hospital in Denver. A lot of times when I tell people this, they see it as a burden. But the fact that we've been home for four weeks, in our own beds, using our own showers and most importantly as a WHOLE family makes it so much easier "having" to drive there every week. Plus, it's kind of a nice break for me... Oli and Athan stay home with JR and Jilly and I have some girl time in the car. Really, she sleeps and I drive, but I guess things really are what you make of them and since I don't have a whole lot of opportunities to have "me time" right now, those drives provide that for me at least once a week : )
We are so proud of how Oli and Athan have adjusted to having a new baby in the house, especially considering the fact that I was gone for 3 1/2 weeks and life was far less than normal for them. They are such amazing big brothers. They are constantly concerned for her and super helpful- although their wanting to help sometimes turns into fights over exactly who gets to help at that particular moment. Just about everyday Oli says, "Her's is cute! Can we keep her, pleeeease!?!?" And Athan says that she is his, "wavorite sister!" (That would be "favorite" for the non-Athan speaking folks out there!) 
Somehow adjusting to being a stay-at-home mom of three has been surprisingly... dare I say... easy. Maybe it's because of everything we've gone through, or maybe it's because I had nothing but time to think about our life while I was in the hospital with Jillian, but the transition from two to three has been much smoother than I had expected it to be.
I guess at this point I can summarize by saying that Jillian is doing amazing. She's continuing to grow and thrive and has made her own little place in our family. She's certainly doing her best to show her little personality. JR insists that she is a little diva, but really? Who can blame her after what she's gone through? This is not to say, of course, that we don't have rough days. Life is not all peaches and cream all the time, but I think we've done a decent job so far at least of making the best of a hard situation and staying as positive as we can.

As cliche as it may sound, we are just taking this one day at a time. We're enjoying life as it is as much as we can and reminding each other, and ourselves that these are the only days like this that we are going to have- good or bad. Oli and Athan will only be this age once- right now- and the same can be said for Jilly too. I think we're both conscious of the fact that the days are quickly approaching when we will really start having to think about and plan for and worry about her second surgery, but for now we're just enjoying our family how it is meant to be.