~Cheyenne's Place~

*Please note updates will appear with the most recent at the top to read earlier posts please scroll down.

The last few months since Cheyenne's birthday have been wonderful and very busy for us! She has come so far in her first year of life, and I can tell she is going to continue on this positive path!

She had her first real Halloween...last year she was too small to go trick or treating. She had a blast that night. She dressed up as Blue from Blues Clues (she picked the costume herself!) and I took her around town in her little red wagon. It was so cute, she had a three musketeers bar in each hand and she was trying to open them with her mouth! We also spent more time at camp in Maine, even spending Thanksgiving there. The holiday season was especially nice!

Cheyenne had a magical Christmas! Santa was very good to her and despite having a nasty head cold, she was just the happiest little girl! Santa visited my Mother's house so that my family could see Cheyenne open her gifts. She had fun opening things and seeing what was under that pretty paper. The best gift that any of us received was indeed Cheyenne herself. To see her as a happy, vibrant little girl just makes me so grateful.

Now that the Holidays are through, I can't wait for the cold and flu season to leave us too! Cheyenne was hospitalized last week with an upper respiratory virus. She had a fever and her sats were low. She spent 4 days there and now she is home and back to little smiley Cheyenne. Thankfully, it was not RSV or Influenza. She has been getting her Syangis shot once a month to protect from RSV and she also had 2 flu shots. We now have oxygen and a sat monitor here at home so that if she should be ill again, we will be able to rough it out here instead of the hospital. It is scary to be in the hospital during the bug season... you never know what you can pick up there. Home is definitely a healthier place for her.

Cheyenne is also having some problems with her joints. It started in November with her favoring her left leg when she tried to walk. And now it seems that her left hand has some issues also. The docs at the hospital recommend that I set an appointment with a Rheumatologist to rule out any arthritis or inflammatory disease. Her blood work did show some joint inflammation and it has me a little worried. I know that it can be controlled with meds but it still hurts me to see my baby with any discomfort. I have my fingers crossed that it may have just been from a virus or something and not a larger underlying issue.

She will be getting physical therapy again to try and help her to walk. She still pulls herself up to the furniture but doesn't take steps on her own. It is all going to come in time but I feel that pt will help her . I have also introduced her to the potty chair. I know that she is still a little young to understand but she has fun checking it out and seeing what it is all about. She knows that it's there when she is ready for it.

We have a new home health nurse... our friend Tracey has been working at the hospital full time and therefore doesn't have time for her home caseload. Our new nurse's name is Sandra, and we had a rough start with synagis, but she came to the house the other day and Cheyenne seems to really like her. I think things will work out eventually. It is rare to find a healthcare professional that makes her smile and not scream! And it is always nice to have someone if we need them.

I will go for now but hope to update again sometime, maybe closer to spring. We can't wait for that to come! In the meantime, we will be trying hard to stay healthy! We hope this finds everyone well.

What a happy mommy I am! Cheyenne passed that miraculous milestone... her first birthday! So many things have happened since my last update! Cheyenne now has a total of eight teeth!( one is a molar!!!!) She started crawling and pulling herself up to furniture the day she turned eleven months old. She babbles and carries on, just like she is having a conversation. I am so amazed at where we are today. Just a year ago, things looked so bleak, thank God I didn't lose hope for her. Look at her now!

Her birthday was very nice. September 4th was a great day for us! We had a small party with just family to celebrate her big day. I made her a Dora the Explorer cake, and she also had a chocolate cake with chocolate frosting to play in. Boy did she make a mess!!!! She got lots of gifts, and had a wonderful time with the kids that came over. I think she wondered what was going on, all the balloons and decorations everywhere. This certainly doesn't happen every day for her!

On September 11, we drove to Massachusetts to attend Grace Campbell's party. She also turned one on September 4th, as well as Mikayla and Zachary. Brenda and Chris threw a beautiful party for their princess, and they included the other 9/4 babies too. They are so kind and so generous, it is a blessing for little Grace to have such wonderful parents! We spent the night at their house, and left for home the next morning. It was so nice to see some familiar faces... the parents anyway, nobody would recognize these kids from a year ago! They all look so healthy and strong, such miracles!

Cheyenne's birthday marked a year of happiness and heartache, anxiety and pure bliss. There were so many times I would sit at her bedside and wonder what her future would be. There are so many emotions that have passed through my life in a year's time. I went from elated to devastated and it was a roller coaster ride the rest of the way. Doctors told me she would be fine, it was the first year that would be the toughest. And we both made it in one piece. To look into her blue eyes and have her flash that smile at me just melts my heart. Will she ever understand what she has been through and how lucky she is to be alive? She will be forever reminded by the faint line that will be on her chest. I will never look at my life the same as I did before her birth. She makes me so happy.

She will go for another sedated echo on October 11 to view her pulmonary veins again. Her last echo showed one had narrowed but the other one was ok. I pray for her that things are still ok in there. She seems to be growing and she is active, so those are good signs. We discussed the timing of her Fontan surgery at our last Cardiology appointment. Dr. Yeager said that he would plan on around 3 years of age, unless she needs intervention with the pulmonary veins before then. In that case, the Fontan would be performed at that time. Just the thought of her having to go through any more pain breaks my heart. But after that last surgery, she will flourish even more. That kind of makes me sad to think that my baby is growing up. But I am just so glad she has a chance to!

We have had a pretty active summer, lots of firsts for Cheyenne. She went to Maine and put her toes in the ocean, went to two different fairs and saw all of the farm animals. She rode a pony and a merry go round each for the first time. We have done weddings and parties and it is so sad to see our warm weather coming to an end. It also means the end of the outdoor fun. That is ok, we will make snowmen and go sledding this winter! I have a feeling she will be a daredevil on a sled!

I will close for now, but I will post another update sometime next month to fill everyone in on the situation. Maybe I will wait until after Halloween... and show everyone those pictures!

Thanks everyone for stopping in to see us!

Cheyenne went to see Dr. Yeager yesterday and she is doing well. Her o2 sats were 78-79, and everything else was fine. She had an echo, and it showed some re-narrowing of the lower left pulmonary vein, which was opened during her last surgery. They weren't able to see the upper left pv, so we will go for a sedated echo on June 21. The plan is to evaluate those veins and determine if action will be needed to open them again. I wish she didn't have that problem. Dr. said he wants to preserve function in her left lung as much as possible. She can live with one lung, but of course, two would be better for her. So, if they are really narrow, she will most likely need a cath to try to fix the problem. Unfortunately, this disease is recurrent, and she will probably face more procedures.

"Eating - no WEARING my lunch"

She is growing like a weed! She was 17 lbs, which is a 3 lb gain from when she came home from Boston almost 2 months ago! That is definitely a good sign that things are working like they should. She has been eating well, and loves her "Chicky and veg-tables and Mac-Kee-ronie and Beef" for lunch. I will pronounce things silly like that, and she laughs and smiles endlessly! No more teeth yet, but she sure is sharpening the two she has - on Mommy and Grandma! She seems to think our cheeks are teething toys! Ouch!

I took her last week and had pictures done. I can't wait to get them on June 3! We got some of her in a washtub with pink & purple duckies, some with an outdoor scene, and even a couple of beautiful, serious poses. She was so well behaved, but the only way we could make her smile was for Mommy to act like a complete fool! I had to sing the "Backpack" and "Map" songs from Dora the Explorer. I will do anything to make her smile. Her happiness is my only concern.

"I love warmer weather"

Warm weather found us for a short time, and now we are stuck in chilly mode! For a week or so, she was able to wear her summer clothes. My, does she look cute in her little dresses and rompers. We were able to go for walks in the evening, and she got to meet some people she hadn't seen yet. Everyone comments on her big blue eyes and her cheery personality. It feels so good to show her off! I planted a flower bed for Cheyenne this year. I put in some pretty flowers, a small fence piece, and two angel figurines. There is a stepping stone at the corner of the garden that says "Hope". I thought that was fitting. Where would we be without it?

This weekend, we are planning to attend the Abenaki Heritage celebration in our town green. There will be Native American drums, dancers, and craftspeople. I will be able to show her off to a lot of her relations there. Cheyenne has a strong Native American ancestry, on both sides. I have Abenaki and Naskapi heritage, and her father is a St.Francis-Sokoki Abenaki. His cousin is currently the tribal chief. Even though he is not actively involved in Cheyenne's life, I want her to know where she comes from. She should be proud of all her ancestors and what they endured. She is such a blend of Native American, French Canadian, English and Irish, and I believe she gets special traits from each. There is a little bit of survivor in all of them, making her one tough little girl with a lot to live for and be proud of.

I will close for now, and I hope to have a positive update in June. Thank you for coming to see us - it means so much to know that people care. Until the next update, Love from Michelle & Cheyenne xoxo

Cheyenne had a wonderful first Easter! The Easter bunny came, and she got lots of stuffed animals to remember the occasion. She got a nice little bunny suit from Uncle Greg and Aunt McKenna, and she looked so cute in it! Holidays certainly mean more when you have a little one to enjoy them with. It was so much fun to get her basket ready, and see her smile and laugh when she got her toys. She made the day.

She has had doctor appointments, the last one being on Monday, April 27. She weighed 15lbs, 14oz, and was 26 3/4" long. According to her pediatrician, she is in the 25th% for weight, and around 65th% for length. That certainly is good news, but I still worry about everything that goes on with her. I am quite anxious about her Cardiologist appointment coming up on May 24. I am so worried about her pulmonary veins, whether they are still open or not. I don't want to have to put her through more surgery or even a cath. I am keeping my fingers crossed and praying that is not going to be the case.

On a happier note, the weather is getting a little warmer for us now. One day last week, we went shopping, and I found that my little sweetheart is quite the flirt. Everyone commented on how pretty she is, and how well behaved she was. This summer, we have a lot of social events to plan on. I have a baby shower, a bridal shower, three weddings, and an anniversary party already on the calendar, so we should have some fun. Cheyenne won't be able to attend all of them, but it will give me a chance to get out and see people again. It is amazing, how one little person can keep you so busy!

Cheyenne has started physical therapy once a week, and just yesterday, she had her first session with the big yellow therapy ball. She loved to bang on it with her hands. And her feet. She was playing with it and babbling, and having the time of her life. The physical therapist said that she has excellent control of her muscles, and that all she needs is a little more strength. She is doing most of the physical things other babies her age are doing. She is ahead of those babies as far as some of the other things, such as speech go. She is making sounds most others don't make for a while. It is good to know that what she lacks in one area, she more than makes up for in another.

A while back, I put in a request to have Cheyenne's name added to the CHD awareness quilt, as well as my niece, Kaitlyn. I got an e-mail last week with a picture of Kaitlyn's completed block, but I have yet to get one for Cheyenne's block. I can't wait to see it. They did a wonderful job on Kaitlyn's, so I know Cheyenne's will be special, too. It seemed like a special way to honor my daughter and my niece while bringing the public's attention to a very serious birth defect. Cheyenne and Kaitlyn's names are only two of the many included in these quilts.

Hopefully, my little sweetie is asleep for the night, and I will be able to catch up on the housework. Bottles must be washed and filled, and laundry must be done. I will probably have another update after her doctor's visit in May. Until then, God Bless and thank you for coming to see us!

Cheyenne has been home for almost a week now. She has had some trouble eating, as we have all been sick. She is feeling better, but still has a head cold. She had her cardiologist appointment yesterday, and all is well. She turned seven months old on Sunday, and today I felt her two bottom front teeth popping through! She smacks kisses at me, too. She is growing so fast, where is the time going?

Sponge Bob awaits!

She loves to watch shows - Sponge bob, Dora, and Blue are her favorites. My Mom comes over to sit with her every morning so I can run errands, and we go over to Grandma & Grandpa's every night for dinner and a visit. My younger brother, Jason, helps out a lot, too. My brother Greg and his wife Mckenna came today and brought her a bunny for Easter. They take special notice of her because I think they see their little angel in her eyes. My brother Steve lives out of state, and has only seen her once, but I keep him posted on her progress. I have been blessed in so many ways. As I write this, Cheyenne is asleep in her crib, safe and sound and home where she belongs. I pray that God will give me many years with her and I promise to enjoy every second I am given.