Tuesday, March 30, 2010

What's it like to have a child with CHD?

It’s Lasix,aspirin,Captopril….It’s wondering…Lord what’s your will?…It’s monitors and oxygen tanks…It’s a constant reminder…to always give thanks…It’s feeding tubes, calories, needed weight gain…It’s the drama of eating…and yes it’s insane!It’s the first time I held him…(I’d waited so long)It’s knowing that I need…to help him grow strong…It’s making a hospital…home for awhile…It’s seeing my reward…in every smile.It’s checking his sats…as the feeding pump’s beeping…It’s knowing that there… is just no time for sleeping…It’s caths,x-ays and boo boos to kiss…It’s normalcy…I sometimes miss…It’s asking…do his nails look blue?It’s cringing inside… at what he’s been through.It’s dozens of call to his pediatrician…(She knows me by name…I’m a mom on a mission)It’s winters home bound…and hand sanitizer…It’s knowing this journey…has made me much wiser.It’s watching him sleeping…his breathing is steady…It’s surgery day…and I’ll never be ready.It’s handing him over…( I’m still not prepared…)It’s knowing that his heart… must be repaired…It’s waiting for news…on that long stressful day…It’s …praying…it’s hoping…that he’ll be okay.It’s the wonderful friends… with whom I’ve connected…It’s the bond that we share…it was so unexpected…It’s that long faded scar… down my child’s small chest…It’s touching it gently…and knowing we’re blessed…It’s watching him chasing…a small butterfly…It’s the moment I realized…I’ve stopped asking…why?It’s the snowflakes that fall…on a cold winter’s day…(They remind me of those…who aren’t with us today)It’s a brave little boy…who loved Thomas the train…Or a special heart bear…or a frog in the rain….It’s the need to remember…we’re all in this plight….It’s their lives that remind us… we still need to fight!It’s in pushing ahead amidst every sorrow…It is finding the strength to have hope for tomorrow.
-Author Unknown

Monday, March 22, 2010

Gracelyn's blessing

Yesterday our beautiful little girl was blessed in our home by her dad. She looked beautiful! I could hardly look at her without crying. My mom made her a beautiful dress! I couldn't find anything that I really liked and my mom would like to make all of her grandchildren's blessing clothes, so together we came up with this:I love it! It is exactly what I wanted.

When I asked my doctor if I could take her out of the house to be blessed at church he said, "Yes, you can bless her at church, but by the time it will be okay to take her there she will be able to walk up by herself." I took that as a no and we planned a time to bless her at home. Here she is with all of the men that will be the most important in her life as she grows up.I am so grateful for each one of these men and for the priesthood they honor. I am grateful they could be part of such of special day for her. We were able to Skype Jeff's parents who are serving an LDS mission in California. They were able to watch and listen to the whole blessing. We were lucky enough to have our siblings and their spouses in our home, along with my parents and Jeff's grandparents. It was wonderful to sit among all the people that mean to most to us in our lives and have them all in our home at the same time. I love and am thankful for them all. I am thankful for their understanding of what a difficult and strange time this is for us right now. Often it is only one of us visiting with Mr. C as the other stays at home or sits in the car with Gracelyn. At times things we do may seem strange or overboard, but we are only doing as the doctors have instructed, as they know best.We are just doing what we need to do to keep Gracelyn alive and healthy. I believe any parent in our situation would do the same. Jeff gave her a wonderful blessing. I am so very grateful to have him as a husband and as a dad to our beautiful children. I am grateful that he honors his priesthood and is there to give us blessings when we are in need. Over the course of the last several months Jeff has given the most beautiful amazing blessings. I love him very much!I want to thank all who were there and made it so nice. It was especially nice for my family. It was the first time in nearly 10 months that my whole family has been together. It was a beautiful day for us!

Tuesday, March 16, 2010

Three Months Old...

Gracelyn turned three months old today! This week alone she had a couple major milestones. On the 10th she rolled over from her back to her belly. She wasn't sure what to do, I had my back turned from her and I could hear her grunting. I turned around to find she wasn't how I left her. This week she slept 9.5 hours. She hasn't been sleeping more than 4-5 hours because of bad ear infections (which she still has) and this week she has been sleeping 8-10 hours. YEAH FOR SLEEP! When we went to the doctor this week she finally broke the 10 pound mark. We are finally starting to get out the 0-3 months clothes. She has started to fit in some of them. She is smiling like crazy! All you have to do is say the word smile to her and you'll get one. She continues to be a content happy baby, unless she's hungry...then you better watch out. She will scream! and it is loud! Some things about Gracelyn at three months:
-She still loves her binki. If she starts to cry we just have to put her binki in and wrap her blanket around her so that it is up touching both of her cheeks and she will fall asleep.
-She has started to reach up and touch our face if we are talking to her.
-She likes to be carried forward so that she can see whats going on.
-She still likes to be bundled up tight to be put to sleep.
-Whenever we put her in the car and drive she falls asleep.
- She LOVES to take a bath!
We are so happy to have this beautiful baby in our home and pray the next three months can go as smooth as the first. We truly have cherished all these things about her now matter how small. We are very grateful to see all the progress she is making and healthy she has been. We Love You Miss Grace!

Nick Names...

They other day I was talking to my father-in-law on the phone. (He and my mother-in-law are serving an LDS mission in California. They left back in August, so obviously they haven't had the chance to meet Gracelyn. With them not being here they really only hear about our families through emails. Apparently when I write I only refer to Gracelyn as Gracelyn.) When I was talking to him he said, "How are Mr. C and Grac...," he stopped then said, "Wait, it's GRACELYN right? You only call her Gracelyn..." I told him no and that she has all sorts of names. He said, "Good because I want to call her Gracee!" I thought it was really cute, but it made me think others must think the same thing. I just really love the name Gracelyn. While we were at the hospital the nurses made a cute sign and put her name on her bed, people would always comment on her name. The other day a neighbor told me it was the cutest little girl name he had ever heard. However, we all actually have different names for her:

Daddy calls her Little Girl
Mommy calls her Miss Grace
Cole calls her little sist
Grandma calls her Grace
Grandpa calls her Gracee
Aunt Tara has given her the name Gracee Lou
Aunt Val addressed her the other day as Beautiful
Dr. Rose calls her his asprin girl or one of his blue babies
PCMC's automated call: Gra-cell-in

Friday, March 12, 2010

8 Week Post Operation Appointment

Today we went to Primary Children's Medical Center for Gracelyn's eight week post operation appointment. Her Cardiologist was very pleased with how she is doing. The first thing she told us was that besides a "little scar" you would never know anything was wrong with her and that she looks so healthy. (If I had a dime for every time I heard that!) They did an EKG and chest x-rays and everything looked great. The doctor looked at her and listened to her heart and said "she looks great, see you in 4-6 weeks". Since she is approaching her three month old mark and the BT shunt only last 3-6 months at our altitude, we will be going back in for visits more often. The doctor felt that since she was doing so well and since her O2 sats are so high she won't be needing the surgery for awhile. YEAH! We also learned a few other things that gave us a lot of hope. The doctor told us that there have been RARE occasions that the second surgery (the Glen) hasn't been necessary because things had improved so much, but she felt sure that with everything else Gracelyn had going on with her heart she would require it. She also told us that even once the Glen had been done it could be reversed and the heart could become a two ventricle heart, whereas with the Glen she would be a 1 1/2. If she went on to require the third surgery (the Fontan) she would be known as having a single ventricle heart. This new information has given us a lot of hope! We left feeling really good about Gracelyn's future. Thank you for all the continued prayers!

Monday, March 8, 2010

Staying healthy...almost

We are always being asked how Gracelyn is doing, since I haven't posted in awhile I figured I would give an update. Gracelyn is doing great. Sometimes it is hard to believe how well she is doing. We are very pleased with her progress. When we were at the doctor on Monday they weighed her at she was 9lbs. 15 oz. She is still so little, but is gaining about 5 oz. a week. A couple of weeks ago we had a scare, Mr. C got a really bad cold. Next I got it and then it hit her. The first day she woke up sick I couldn't help but cry. I was devastated. I felt like all of our efforts were in vain. Before she was born we bought a BBG (Baby Booger Getter...that is the real name, and anyone with children should have one of these.) I think that this machine saved her from being admitted to the hospital. We would suck her nose out about once an hour and about a week later her cough was gone. Just to clear the air, during that time we DID have to take her to the Emergency Room, but only to get her saturation checked because the Pulse Ox my doctor uses won't work on her. After she was born they did a cath procedure in her leg and since then it has been really hard to find a pulse or get sat levels in her feet. While she was sick her hands, feet and mouth had gone really purple and I was worried about her saturation level. I couldn't take her to my doctor to check her since his machine wouldn't work and so we were told to go to the ER. Within a couple minutes they were able to get her levels. At first it popped up at 75, they told me not to worry we just needed to wait a couple minutes to get a good reading. I tried to tell them I was really happy with that and they kept telling me to wait. I tried to explain to the nurses that she needed to be between 75-85, but they wouldn't listen. I wanted them to take her off of the machine, but they kept insisting we wait to see if we could get it to go up. Finally I got through to them. It was kind of funny. She ended up being around 85-92, which is just as bad as if it were too low. My doctor is a little worried about her being too high. Needless to say, we now have a really nice pulse ox in our home. I have been really good about not using it too often, I just try to check her every couple of days. She has been right were she is supposed to be. At the hospital they taught us to check her based on how she looks, not on what a machine says. Last week she became really grouchy and stopped sleeping at night. She would wake up and scream the most painful scream. My stomach was in knots. I thought that it must be starting to be time for the next surgery. Jeff reminded me that the doctor had mentioned that she had a little fluid behind her ears. Mr. C was going back in on Monday to have both of his ears checked after getting over two bad ear infections. While we were there I had the doctor look at Gracelyn. I don't know if I thought we were exempt from all other sicknesses since we have to deal with a rather large one, but I guess I didn't expect something to be wrong with her. The doctor found that she also has ear infections in both ears. As bad as I feel that she is in pain, I am so happy that all she is dealing with right now is ear infections. Next week she will be 3 months old and I feel really fortunate that all we have had to deal with is a cold and and ear infection. Thanks to everyone who has continued to ask about her and have kept her in your prayers. They are definitely felt.

Our First Walk with Gracelyn

We were so excited to get out of the house last Sunday and take Gracelyn for her first walk. We had decided that we could start going for walks once it hit 60 degrees. When we got home from church the sun was shining and it was about 55. We decided it was nice enough we could take her out. We bundled her up in a hat, gloves, coat, blanket and two car seat covers and headed out. It was so nice! Cole rode around on his new big boy bike and I pushed her in her stroller with Jeff chasing Cole and picking him up every time he crashed. It was nice to get her out of the house and get some fresh air. We are so excited for spring! It won't come soon enough!