Grant's Journey

One of the best things about having a heart baby is having the opportunity to meet and learn from so many other absolutely fantastic families. Intermountain Healing Hearts is the family support group that serves Primary Children's Hospital and it has been a huge resource to me as a parent of a special heart kiddo. We have connected with other families going through similar things and though some friends, we know only through the internet forums, blogs, and emails, we have had the great privilege to meet many of our heart buddies in person. A few days before Grant's Glenn, we were finally able to meet our little buddy Trey and his family in person. Trey's mom, Robbie, is cousins with one of my high school girlfriends and former roommates, Abby. Abby and Robbie's families had a family reunion in August and so the Andersen's were in town. We finally got to meet up with them and meet Trey in person. Trey started kindergarten this year. He is post Fontan (the third surge...

Kyle and I decided that Grant's miraculous life needed to be celebrated when he reached his 6 month milestone yesterday, a day we often wondered if we would ever have with Grant. We started by making a birthday cake for us to enjoy in his behalf! It had strawberries in the shape of a heart on top, but by the time we finally got around to eating it, it looked pretty pathetic! I might have to look for a volunteer cake decorator before Grant's first birthday since we seem to be lacking in this department! We had fun taking photos of Grant with some new toys and clothes. We let him try to pull out a gift from a bag and I had to laugh with the noise of the tissue paper scared him! After he calmed down, it was a fun toy. Grant sleeps by pulling a blanket up over his head and often, this is the only thing we can see. Good thing he has oxygen on! Makes for a great photo shoot! Happy Six Month Birthday little one. We recognize that you are an absolute miracle in our lives and we are so ...

**This post is long and wordy, but is designed to share Grant's story for those who might be new to the blog and want to catch up on his life. Please do not read if you have followed Grant from the beginning as it is all just a recap** With yesterday marking Grant's official half birthday, Kyle and I took the day to reflect on the miracle we have entrusted to us. Forgive me for a moment while I relive the last half year for myself as well as anyone who might be new to Grant's story. Grant was born after an intensive 26 hour labor. We got to see him very briefly while he were cleaned up and then Kyle carefully handed him through the NICU window where several lines were places and Grant was stabilized. At less than 20 hours old, we were visiting Grant in his new bed at Primary Children's when we could tell things were not ok. Grant's heart rate was reading 300+ beats a minute and nothing was slowing him down. His little ventricle did not have time to fill with blo...

We spent yesterday with Grant at the pediatrician's office for his 6 month well child check. Grant also got his 4 month vaccinations (we are behind since he had to wait 6 weeks prior to and after he was on the bypass machine). Things are looking pretty good for Grant. His stats are: Weight- 15 lbs 14 oz- 23rd percentile Height- 26.5 inches - 56th percentile Head circumference- 16.2 inches- 3rd percentile Our pediatrician is a little concerned that Grant has only gained 14 oz in the last 6 weeks since his Glenn. We are just continuing his high calorie diet and figuring that as he recovers, his growth should continue. I think he looks great and healthy, so I am not worried! Our whole family also received our flu shots. Grant will be receiving the swine flu vaccination as well as the RSV monthly shots (synagis). We are going to be as careful as possible this fall and winter to keep Grant healthy. We know firsthand that even a small illness for Grant can turn into months in the hospit...

A little taste of the cabin... Get ready to see a ton of pictures.... so many in fact that I added a few collages for the pictures that I wanted to include, but not necessarily all of them in single frames (Just click on the pictures to make them bigger). In order to make up some time for the summer we feel like we missed out on this year, we have spent the last two weekends at our family cabin just outside of West Yellowstone, Montana. I love the cabin. I wish that I could say that it was a dream vacation, but the truth remains that Grant was a pill for much of the time we were there, during both of the weekends. I am not sure if it was the elevation change, lingering headaches from his new Glenn pressures, or the teeth that are trying to cut through. Grant kept everyone in the house awake at night which made for a pretty grumpy mom and dad. We still enjoyed the weekend and managed to pull out the camera to document some of Grant's fall/cabin wardrobe, and of course, the smiles th...

Home again...Home. I LOVE this place! I have NEVER been a homebody and now with an immunocompromised kiddo it is sure a good thing that I have a healthy appreciation for what it feels like to come home again after what could have been yet another scary hospital day. Yesterday, Grant had his post operative appointment where his cardiologists would check his heart function and evaluate the success of his recent Glenn procedure. Results... HE PASSED WITH FLYING COLORS! We are thrilled. What this means... 1. Oxygen... now a thing of the nights only. See ya later obnoxious concentrator hum during the daylight hours! (we will of course still have to use oxygen for travel or other times when the little guy starts looking a little too blue.) 2. Elevations.... formerly a thing of the past do to a very unstable heart and need for excessive oxygen... now OK to go (on full time oxygen, but that is cake!!) Island park....cabin...West Yellowstone... Labor Day Weekend.... HERE WE COME!!! That is wher...

Have you seen the cute pajamas that the hospital has now for patients? Goodbye dirty old care bear gowns....hello cute old man pants! I loved these! (Picture from Grant's last night at the hospital) We have been home for one week now and I apologize for the lack of update.... our new construction home area is not in range of any DSL internet cables yet! I hate not having internet! Grant hit his five month old birthday yesterday. What an amazing five months it has been. Since coming home, we have had a bit of a rough recovery. Grant has been in some major pain, at least initially. He has been pretty ornery since we got home and his sleeping schedule (that we worked so hard to establish after the last hospital round) is shot. Grant is up many times a night and is back to startling at something as simple as a sniff, cough, or the squeak of the mattress as mommy tiptoes back to bed after finally getting him asleep! Grant has learned a few new tricks.... this week, he has discovered hi...