Grant's Journey

Today, I added a link list to some other families that we have come to know in this early part of Grant's journey. I am never sure what the etiquette is for seeking permission prior to linking someone to my blog.... Does Miss Manners have a column on this?? Heart families... please leave me a comment if you would like to be removed (or added!) to our link list. There are many that I have not met personally and yet through the blog world, I have felt very connected to the struggle each family faces. I thank everyone who has been willing to share their blogs with us and help Kyle and I to get a better idea of what life as a heart family entails. If you are another heart family, we would love to get to know you through the blog world (and in person if you live in the area... we do have a long hospital stay coming, so maybe we can meet up if you have check ups at the hospital while we are there!) Let us know where we can follow your lives and therefore add our prayers and those of our ...

We are home again after another long and exhausting 2 day hospital stint. This time however, we came home with huge smiles on our faces!! Let's start chronologically with our cardiology appointment. **WARNING** Below is a very long description in lots of detail, so if you want the jist, just know that we got good news and are happy! We met with Dr. Mennon at Primary's since Dr. Pinto was on rotations in the PICU that day. Grant was fairly cooperative this time (no need to crawl around on all fours and shake him up!), however his age was beginning to be a problem. His bones are very well developed and his rib cage has started to harden making it more difficult to get a clear picture of his heart. We were told however that he has a beautiful spine... (I sometimes wonder if the fetal echo techs don't quite know what to say!!). When Dr. Mennon came in, he looked a few things over, smiled, and told us to meet him in the "bad news room"... which had good news today! Dr....

Guess what folks? We are one month away from D Day today! Sheesh. Time flies far too quickly. Grant has been preparing for his arrival though. We went to a stake Valentine's dance on Friday and had to leave early because I kept getting contractions (though they were considered Braxton Hicks and therefore not alarming!) that were fairly consistent. He has also started to drop a little lower and I have to keep reminding myself that waddling is cool! Thanks for your prayers for our sweet friend Gracie... we continue to hope and pray that she like many of our other heart friends will pull through the difficulties that come with trying to make it on half a heart. Like my title suggests, I have finally formed an official stance on baby showers. Now please, this is not meant to offend, but since I really try to be honest and express the reality of going through this journey, some might try to argue me out of my position. I remind you that Kyle and I have good and bad days and after talkin...

Tears have been rolling down my cheeks today. One of our precious heart friends has crashed hard and now needs all of our prayers. Sweet baby Gracie will turn 1 on March 20th and she has had a very rocky ride with HLHS. After her Norwood (first surgery), she struggled with MANY complications and stayed at the hospital for a record 2 1/2 months. She has continued to struggle with elevated pressures in her heart and feeding problems and has had her Glenn (second surgery) delayed multiple times in hopes that her little heart would be able to handle a second surgery. She went in this week for a heart cath prior to her Glenn and they found that her heart was too weak to perform the surgery. Her parent's were faced with the difficult challenge this week of deciding to pursue a heart transplant, but this morning, they determined that she had a stroke as a result of some blood clots released after her cath. She is in critical condition at Primary's and is one sick little sweetheart. Yo...

Before Kyle and I were married, I had a big distaste for Valentine's day. Even when I was in a relationship, it seemed that the day was full of expectations and a false sense of obligatory romance. We would joke that it was really "Singles Awareness Day" or "Buy Your Sweetheart Something to Show Your Love For One Day"... but now I have a whole new perspective on this week. Prior to Grant's diagnosis, if someone had told me about a CHD, I would have had no idea what they were talking about. Now, we belong to a community of heart families all over the world who are battling a variety of heart defects. Grant's is one of the more serious since CHD's range in complexity and seriousness, but there are still a wide variety of families affected by CHD's across the world! Since I am still pretty new to the whole CHD scene, I borrowed some research from the March of Dimes, and the American Heart Association that has been gathered by a few of our heart fami...

Can you believe it? We are six weeks away from meeting Grant. Sheesh! I mentioned weeks ago that I felt like a time bomb and nothing is more true right now. We are ticking closer to the start and I am starting to feel some anxiety...natural right? Today, we had another non stress test (NST) and Grant was being a stinker. His heart rate was really low and he was not responding to the test. Our OB kept checking on me and after an hour they decided to pump me full of juice to see if a blood sugar spike was in order for Grant. Finally, after another 40 minutes, his heart cooperated, picked up, and showed the responsiveness that we needed. I think that was probably the longest NST my doctor had ever seen! On the plus side, we talked with him for 30 minutes about the delivery and even got training on how to read the NST printouts! We are really getting good at all of these tests! After talking in my parent's ward to some old friends and neighbors, I realized that many people might not kn...