Our Christmas Card

This was the Christmas card we sent out this year. We want to wish all of our family and friends a belated Merry Christmas and a Happy New Year! (you can click on it to enlarge and read the words on the card)

Christmas Eve Blankets For Primary Childrens

(This is Tom posting)
At my work, each branch office got together and had “blanket parties”, where we brought together purchased fleece, cut it out, tied it, and made blankets. Last year we took these blankets to Shriners, Primary Children’s, & the Ronald McDonald house.

This year, I asked if I could take my branches blankets to Primary Children’s and deliver them to the PICU. I also ended up with being able to also take our Corporate office’s blankets & deliver them as well. I ended up with four huge bags of blankets, with probably 80 plus blankets in them.

I really wanted Max to be a part of this, so he came with me and helped me carry the blankets down from the offices to my truck. The bags were heavy. Really heavy for a ten year old, but he carried them without complaint. My plan was that I would try and personally deliver to the PICU two bags of blankets, then would take the remaining two bags to Shriners and the Ronald McDonald house.

When we arrived at Primary’s, I parked in a parking space versus stopping in their quick-pick up and drop off area just in case they let me go upstairs. On the way into the hospital, we met a mom and grandmother from Montana who were heading back inside. We asked if we could give them a blanket for their little boy. They were very grateful, got tears in there eyes, and thanked us. This was a great experience for us, and I got the idea that I hoped they might let us actually deliver these blankets to the patients and their families.

The security guards stopped us inside and asked if they could help us. We explained we wanted to deliver some blankets my work had made up to the PICU unit. The guard said they would be happy and grateful to accept the delivery themselves because they weren’t letting people into the unit. I said that was perfectly fine and would great, but asked if they wouldn’t mind just a quick phone call upstairs explaining that Gracie Gledhill’s brother and dad were here with some blankets and wanted to say hi and personally deliver the blankets to them. If it was a problem, then we’d be really happy to leave it with the guards. So they called, and the PICU said to send us up.

I was really glad I had not parked in the loading zone, both for the chance to meet our new friends from Montana, and for the fact they let us upstairs into the unit. We went and picked up a wagon and loaded two bags into the wagon and went up to the PICU unit. They let us in and I didn’t know anyone at the front desk. But explained who we were and they knew who Gracie was. I asked if there was any chance I could go around and hand deliver the blankets to everyone in the unit. Her response was so great, she said, “well, just do it until someone gets mad and kicks you out”. That was all the prompting we needed.

Spending a few moments in that special place with those amazing doctors and nurses was actually very emotional for me. The weight of the PICU unit and spirit that is there came rushing at me, and I got a little teary as we stopped in each room and gave out blankets. A special highlight for me was when we saw Michael, who is one of the people in charge of ECMO, and who cared for Gracie many times. Another highlight was running into Doctor Statler, who is the doctor who was with Gracie when she flat-lined, and personally administered CPR to Gracie’s open heart while they hooked up the ECMO machine (heart and lung bypass machine), until the surgeons came and took over for her. She is one of the reasons Gracie is alive today. I was able to give her a hug and thank her for all she did.

Delivering these blankets was so special for Max and I. I had about 8 blankets left over and knew that they would go to good use, and left them there for those parents and patients who undoubtedly would be entering the doors that day.

We headed downstairs to get in our truck when I got a really overwhelming sense to get the remaining blankets and take them to the Surgical unit and NICU, both places we spent time in with Gracie. So that’s what we did.

It was truly an amazing way to spend some time with my son. I’m so thankful that my work allowed us the opportunity to deliver these blankets, and for their time, talent, and sacrifice in making them. I’ll never be able to fully convey the joy I felt delivering them.

Max summed it up perfectly when we were talking about it in the truck afterwards. He said, “Dad, I feel really good, that was really amazing”.

On this Christmas Day, I would like to thank each and every one of you who has supported our family. Your countless kind deeds, the many encouraging words, the out-pouring of love and concern. I’m especially grateful for your faith and prayers. This has been the most challenging & difficult year of our lives. So it’s no surprise that in so many ways, it’s also been the best! Merry Christmas!!

Blogroll Question

Okay, so I just made a post a few hours ago and it seems that it will NOT update on anyone's blogroll. You know the sidebar list of people's blogs that gives the title of their post and let's you know when people have updated? Well, this has happened to me a few times with other friends blogs. One blog will have down that they haven't updated in weeks and when I click into it, they in fact have updated but it never updated on my blogroll. Has anyone else had this problem? I tried to Google it and could not find a way to fix it. Anyway, just wondering.

p.s. It's 11:53 p.m. and about 9 hours have past since I made the above post. Blogroll has now updated to show the latest update on Gracie's Blog. Totally weird. Why it will immediately update on some and take almost 10 hours on another is a mystery!!!

Gracie 9 Months Old, 9 Month Review

Gracie 9 months old with Callie jumping in the picture

Gracie, 9 months in review(From left to right, top to bottom, Birth through 8 months) These were pictures taken on the 20th of every month.

Gracie turned 9 months old on December 20th. I can't believe we have had her home now for 6 1/2 months! I am a little reflective on this her last 'birthday' of 2008. Last year on December 4th we found out the news that would change our lives forever. We went to the Maternal-Fetal Specialists and they confirmed a heart defect and told us our baby had Hypoplastic Left Heart Syndrome. With our first child, we were very worried about a heart defect because Tom's brother and sister (born about three years apart) died days after birth from a heart defect. After we had 3 healthy children, I really did not worry anymore about it. Little did we know that the fourth times the charm. And what a charmer she is. We are so grateful to have Gracie in our home this year for Christmas. I can't help but think back to the December we had last year.

I remember......

*lots of tears, lots of research on the Internet, finding other HLHS baby blogs and notating which ones LIVED and which ones DIED, with a few more tears.

*wondering and worrying about whether my baby would live, stressing over statistics of a 75% chance of living, contemplating feeding tubes, oxygen, medications, doctor appointments and how it would change our daily lives and the lives of my three other children.

*trying the best we could to explain to our kids what was happening with mommy and the baby and why they would see their parents crying once and a while (which we knew would scare them and make them sad)

*several of my sweet friends and family coming to the home and bringing little gifts to lift our spirits.

*a wonderful family in our ward who did a fun 12 days of Christmas to us to lighten our load.

*my girls night out group surprising me at our Christmas get together. Instead of exchanging our usual $20 gifts, they pooled their money together and gave it to me in a card along with several complete freezer meals. You guys are awesome!

*wondering if I should buy any clothes for my new baby. Being told by the hospital coordinator that I could put socks on her in the intensive care unit and that's about it.

*having the third cold of my pregnancy in three months and feeling completely drained and tired.

*starting this blog which has been a wonderful way to document our journey, connect with our family and friends (and new friends!) and the life of our sweet Gracie.

I had a lady come up to me the other day and ask if I was Gracie Gledhill's mom and that she recognized me from the blog and wanted to say what an inspiration Gracie had been to their family and how they prayed every night for her. She asked me how we got through it and I said 'you just mentioned it'. We got through this because of the prayers OF ALL OF YOU! We have felt that we have been carried through our hardest times and I know it is because of the hundreds of prayers offered in our behalf. Thanks to everyone for being there for us during this life changing year. We appreciate your friendship and prayers. Here's to another life changing year.....2009!

Four Generations

Here we are on Thanksgiving. My Grandma was able to meet Gracie for the first time. What a fun thing to be able to get a picture with FOUR generations.

93 (almost 94!!) years young and 8 months old. There was something really poignant about watching my grandma hold my baby. Here is a brand new life and another who has lived a very full and long life. We wondered together what the world would be like for Gracie in 93 more years. Quite a sobering thought. She is my last living grandparent so this was a fun picture to get. Doesn't she look great? She lives alone and does everything BY HERSELF. She has only been admitted to the hospital to have her babies. Amazing.

Quick Update

Sorry no picture, but I wanted to do a quick update. Gracie had a fairly busy week. I took her in for her second RSV shot, which she handled just fine. Then on Wednesday, she had her follow up visit with Dr. Su in cardiology. She has lost a little weight and weighs only 12 lbs. 14 oz. (she was 13 pounds a month ago) Dr. Su was a little concerned with this and we are working on increasing the doses of milk I am giving her everyday. Losing weight can be a sign that the heart is working too hard. In Gracie's case, he thinks her weight loss is because of her reflux. Her goal is to take in 26 ounces a day. I have increased it a little and she is tolerating it well so far. She still struggles a little bit on her feeds at night. Although I did figure out how to set her feeding pump to dispense her food for two hours and then give her an hour off and repeat that 2 more times in the night.

Dr. Su said that Gracie will most likely need the G-tube with the Nissen surgery. She will need the G-tube because she is no where near taking by mouth the calories she needs to sustain herself and needs the Nissen for her reflux. It is the consensus though, that we want to get Gracie through her second surgery before dealing with the G-tube issues.

So, as for her next SURGERY. I have a follow up visit the first part of January. If she has lost more weight and her saturation levels are declining, they will order her heart cath and schedule her surgery very soon after. If she has gained a little weight and is keeping her sats between 75-85 , then she will probably have surgery sometime at the end of January, into February. So we will have to wait and see.

Kids on the Move came yesterday and as usual, little Miss Gracie was a crabby patty. On our previous visit with KOM I was asking him about Gracie compared to his other clients and he mentioned that she was the fussiest child that he is currently working with. He didn't say it in a negative way, he just acknowledged that we have a challenge ahead of us with getting her to cooperate with the therapy to improve her motor/feeding skills. It was actually validating for me to hear that she really is kind of hard to get to do her 'exercises'. She pretty much fusses the whole time you try to get her to roll onto her side or stomach or anything besides lying on her back. However, she actually LIKES to be held now. YAY!! This past week, Gracie has taken about 10 spoonfuls of pears on a couple of occasions. Also, she likes apple juice squirted into her mouth from a syringe. So we will continue to take little baby steps with her.

Max, Taylor and Callie got their flu shots this week. They were NOT excited but were very brave and did very well. Tom, me and Gracie had already gotten our shots. So now we are all covered. So far, miraculously, Gracie has not had any major sickness since we've been home. That is 6 months!!!! Knock on wood!

A few things Gracie is doing now:

--blinking her eyes deeply on purpose, just to get us to do it back. Pretty funny.

--shakes her arms and kicks her legs really fast when she sees me.

--sits in her Bumbo chair for a fairly extended period of time, which she used to just hate doing.

--is struggling with a BAD diaper rash. She has had really bad ones on and off for about 4 months now.

That's about it for now. I hope everyone is getting ready for Christmas......only 18 days left. YIKES!!

A Letter of Thanksgiving From Max

Max (and Taylor) brought home letters from school this week for Thanksgiving. Max's letter says:

Dear Mom and Dad,

Thank you for being great parents. Thank you for washing my clothes and cooking my food. Thank you for taking care of Gracie and keeping her alive. Thank you for taking care of me and Taylor and Callie.

Love,
Max

I know this year has effected Max in a lot of ways. I was reminded of this in his letter. He loves his sister so much and is a big help with her. He always prays for her. His 5th grade class just did a service project where they made sibling kits for the brothers and sisters of patients at Primary Childrens Hospital. They asked Max to tell Gracie's story. We printed up about seven 5x7 pictures of her life and he told her story to the class. I hope this helped bring a real perspective to their service project.

We are so THANKFUL for Gracie this Thanksgiving and for our other healthy children, our families and friends and for our membership in the Church of Jesus Christ of Latter-day Saints. We have been immeasurably blessed this year and have witnessed a miracle in our lives . We get to live with this miracle every day. For that, we are very thankful.