Wednesday, December 9, 2009

I'm the big sister!!!!

On 11/24/09 Ember welcomed her new little sister Autumn Therese into the world. She decided to make her grand debut a little earlier than anyone expected so Ember was a little less than prepared. She thought that she was just going to have a fun day at home with Grandpa and then mommy would return to her. Well, that was not the case. Autumn decided to be too lazy for the Dr's liking so he said she needed to come early. So, Ember did get to spend the day with Grandpa, but mommy nor daddy returned to her. Instead, that afternoon she got to take a ride to the hospital to meet her new baby sister.

We were all worried that the minute she got into the hospital and saw the nurses and dr's she would freak out. She has been having a lot of major anxiety about dr's and dr offices lately. Enough so that she just starts crying at the sight of a white coat or blood pressure cuff. However, she did amazingly well. She was also VERY happy to see her baby sister. She immediately wanted to touch her and love on her. Due to this event she also got to have another first. She spent her first nights away from mommy and daddy. The first two nights she stayed in her own crib with grandparents staying at our house, but the third night she stayed the night at Maw Maw and Paw Paws house. Her first official sleep over!

Since we have been home, Ember has been great with the baby. She has been a little fussy, but it's not really from being jealous. It is because mommy can't pick her up on her own yet. Not sure when I will be able to, but I want to so bad. Now, two weeks out, I can have her put on my lap and I can hold her, but it's not the same as being able to just pick her up whenever she wants/needs to be held. Plus, she has gotten a cold and has been very stuffed up the past few days. She has continued to be VERY loving towards Autumn and loves hugging, patting, and kissing her on the head. It is so sweet.

Today we had a slight meltdown however. Ember wanted to love on Autumn and hold her like mommy was so I told daddy to sit her on the couch. We then let Ember "hold" Autumn. She was beaming and just kept staring at her. We did take some pictures. The meltdown happened when we tried to take Autumn back. Ember yelled at us and held onto Autumn. So, we let her hold her for a little bit longer. Then I tried to take her again and Ember did the same thing. She yelled and tried to pull Autumn closer to her. I explained to Ember that Autumn was not a baby doll and then took her back. Ember threw an all out fit. Crying and yelling and actually laying down on the floor kicking her feet!!!! It was actually pretty different. She has thrown mini tantrums before, but nothing like that!

The rest of the night she was alright with her. She continued to want to try to hold Autumn, but didn't really throw any fits when we said no. I am sure that the novelty will wear off soon and Ember will want us to take her back! hehe For now though, I am enjoying that she is being such a great big sister. I look forward to them growing up together and becoming fast friends. They are both such beautiful little girls and I feel confident that they will be best of friends and love each other no matter what. At least that is what we are going to try to teach them. We are truly blessed to have Ember still with us and now we are doubly blessed to welcome a new little girl into our lives. Hopefully Ember will teach her all of the things that she has taught us the past 18 months and even more as they grow up together. The picks below are Ember meeting Autumn and Ember in her "I'm the big sister shirt". She also got the puppy she is holding as a present.

Tuesday, November 3, 2009

Pictures of me

Here are some pictures of Ember from the vacation we took to branson. I have also added them into her slide show along with a few others taken from that vacation!

Butt changing time!

Daddy took me on a ride. Doesn't he look comfy?!

Vacation wears her out!

Wednesday, September 23, 2009

I'm going to be a great big sister!

Ember has already started to display the qualities that everyone wants in a big sister. Much to the dismay of the cat. I can see where she would be confused that he is a little person. I mean he does way 19 pounds and for the first 8 months of her life, he weighed more than she did! I'll give you some examples of what makes a great big sister and how she meets these requirements!

1) Be loving and caring at all times - This includes sitting on, laying on, and using the cat to push off of when standing.

2) Help out with feeding time - eat goldfish while running around the room and then notice that the cat, as thin as he is, looks like he needs food. Proceed to chase him around the room, goldfish in outstretched hand, trying to get him to take it from you. Never mind the fact that if you DO happen to catch up to him, you hit him in the face with said goldfish!

3) Help out wherever you can - If mommy is cleaning up, try to clean up to. By cleaning up, this includes the cat. And it means that he needs to move from where ever he is so it can be cleaned. This can be done by either patting him on the head or trying, unsuccessfully, to pick him up. Who cares that he still weighs over half of my body weight!

So, I have a feeling that this big sister stuff is going to come SO naturally to her that we have nothing to worry about! (uh huh!) I do have to say that she does really well, most of the time, around other babies. Here's hoping!

Thursday, July 2, 2009

New pics!

Just wanted to let everyone know that there are new pictures that have been added to the slide show. I will post an update later!

Monday, May 18, 2009

6 months ago....Thank you

It has been 6 months today since Ember received her Liver Transplant. Though there have been a few bumps along the road, they have been mild and easy to cope with. I think about her donor family every day even though we do not know who they are. I can't imagine living life without her and I am so grateful for everything they did for us. I can't even imagine what they had to go through to save my baby. In the past 6 months Ember has made an amazing amount of progress. She is gaining weight steadily and is really starting to fill out. No more bird legs as Michelle says. :)

It is hard to believe that 6 months ago at this time I was sitting in her ICU room staring at a flat little belly for the first time. It was such a relief to be on the other side of Transplant. Sometime during the night, I cried for my baby and her donor angel. Sometimes, just looking at her, I tear up knowing that she went through more in the first 5 1/2 months of her life than most will go through in a lifetime.

She is now walking with assistance from hands or furniture. I am sure that in a few short days or weeks she will get brave enough to let go and take off on her own. She has never really gotten into the who crawling thing. She takes one or two "steps" of crawling before either rolling the rest of the way or just sitting up. It is amazing that this is where we are today. She is living proof that Organ Donation is the right choice. If you have ever, ever doubted, just look at the pictures on this page.

Thank you to our donor family where ever you are. They sound like such simple words for the sacrifice you made, but they are all we have. We love you from the bottom of our hearts. We keep you and our donor angel in our thoughts and hearts daily.

Thursday, March 19, 2009

Meeting new friends is good

Last week when Ember got her labs drawn, everything was alright with the exception of her white blood cell count. It was on the low side so they asked for us to come back this week and get them drawn again. So, that is what we did yesterday. We also were asked to visit with a family who was here from Indiana for a transplant evaluation.

Their little boy has BA and needs a transplant as well. It was nice to get to share Ember's story and hopefully help them feel a little better about Transplant. I think that the first thing that I said to them was that Transplant is scary, but in the end it's worth it. Hopefully seeing Ember as healthy as she is now helped them feel better also. I am so glad that we got to meet them. I really want to be able to help others who are going through this as much as possible. I know that Liver Families and The Patterson's helped us get through the toughest time. Hopefully, we can do that for this family.

Also, I got Ember's labs back today and her WBC is still a little low. It is higher than it was last week, but not where it should be. This could be for any number of reasons. Most likely her medicine or she might have a touch of a viral thing going on. Her transplant coordinator said that when she talks with the Dr's to see what they want to do, she would let us know. For now we just need to keep her clean. Which means keep her away from all the sick people out there!

Also, this is kind of sad, but for the second time in a row she didn't cry when they stuck her to draw blood. She just sat there and watched them do it. Sad because she is 9 months old and getting stuck with a needle is old hat to her. However, I am grateful that she allows herself to let it be that easy. I wish I had that when I was little. Heck, I wish I had it now. I'm still not fond of them. She's happy though and I plan to keep her that way!

Monday, March 9, 2009

Much better!

Ember is feeling much better since the stuffy nose incident! She is still a little stuffy in the mornings, but nowhere near as bad as she was. YAY!

I know it has been awhile since I have done an update for her, but I feel like when things are going well, there isn't much to say other than, things are going well. She is happy, healthy, and enjoying life as far as I can tell. She is STILL not trying to crawl at all. She would rather stand. She has started to pull herself up into a standing position if she is sitting up. She hasn't quite figured out how to sit up from a laying down position yet though. Hopefully soon.

I do worry that she is behind, but I also think that she is 9 months old and she's had several surgeries so maybe I shouldn't worry about it. I know that she will do whatever she wants in her own time. Though, at this age on are when signs of autism begin to show up. I think that, for me anyway, that prospect is scarier than transplant. I mean, I know that transplant fixed her. With autism, there is no fix unless you have a million dollars to go to dr's every day and make your own therapy sessions, etc. She has no signs, that I know of, of autism, but I worry. That's what I do.

Anyway, in other news, she is saying "dadda" all the time right now. EVERYTHING is dadda. I may be jading myself, but I don't consider it a true word until she can associate it. So, I am hoping that "mamma" is the first word she associates even though she isn't saying it yet. She says "Ma" or "Ba" every once in awhile, but right now "dadda" is the favorite.

She gets her labs drawn Wednesday and then has her 9 month check up at the pediatrician this Friday. So, we will see what they say other than the fact that she is perfect. Which, we already knew.

Also, we are entering her into a Most Beautiful Baby contest that is put on by a local photographer. The hard part is trying to pick the picture! It's SO hard! I will update you on what happens with that as well. :)

Monday, February 23, 2009

I can't breathe!

If Ember could talk, that is what she would be saying right about now. She has what appears to be a head cold and, well, she was so kind and generous that she gave it to mommy too. We have both been miserable for the past week. She has been all kinds of stopped up and every time she tried to take a bottle, she would have to stop every few drinks in order to take a breath. The saline drops are a joke!! They do nothing but make her more snotty. Plus, I can't hold her down every hour to give them to her and then suction out her nose. Her poor nose would be too sore and I can't even imagine what her mucous membranes would look like.

She gets SO mad when you use the nose sucker thing on her too. It takes at least 10-15 minutes to calm her down again afterwards. Today has been the first day that she has really started to actually have a runny nose. It wasn't bad at all today, but this morning it was just gross. She was sitting on the floor playing with her blocks before Matt left for work and she looked at me and this big snot bubble came out of her nose!! Blech! Poor thing was so mad when I tried to wipe her face again.

Other than that she has been doing great! So, since we are both grumpy and sick and not feeling good, I don't have a lot more to say. Oh! I did want to let you know to check out my new blog too. (If you are pressure) It is listed first in the Family and Friends blog list.

Wednesday, February 18, 2009

RIP Dr. Morio Kasai

I just found out today that Dr. Kasai passed away on December 8th, 2008. Click here for his obituary Does the name sound familiar? That's because this is the man who pioneered the Kasai procedure that helps babies with BA. I honestly did not know he was still alive, but suddenly learning of his death has hit me a little harder than I expected. It leads me to think of all of the "what ifs" had this man not ever been born, or not ever gone into medicine, or not ever decided to try to help out BA babies. I wonder, also, if he knew the sheer multitude of lives he has touched. Not just BA babies, but their families, their friends, and anyone else who cares to listen to our stories. I certainly hope that he found joy in his life before his passing. So, today is a bit if a sad day for me, but a happy one as well. I got to have a tiny little piece of this man in my life. I am eternally grateful to him for his accomplishments. Without him, Ember may not be here today. She might not have lived long enough to receive her transplant. So, thank you Dr. Morio Kasai. I am sorry that I did not get to say this to you in person, but I think you now know the magnitude of your one action. Please take care of all of our liver babies who did not make it. I hope you have found peace. Know that our family has with your help.

Tuesday, February 10, 2009

Bye Bye Broviac

Ember's Broviac (central line) removal was Friday. She is now free! No more tubes! She has already had two baths (One of them thanks to exploding diapers) and she LOVES them. Pictures will be coming soon. She got to sit in the sink and play with the water. For the bath she had at home, she played with a Duckie and the water thermometer. It was nice to not have to worry about getting anything wet and to see her actually enjoy a bath.

Now hopefully, she scooting or maybe even crawling will happen. I'm not convinced that the broviac was the reason that she has not started to do either one of these, but it could be. Right now, she rolls or scoots on her back anywhere she wants to go. She is also getting more and more stable at sitting up in her own. We bought her (well, I did) a giant bunny from Sam's on Sunday. It is twice the size that she is! Yes, I know she did not need another stuffed animal, but I had a bear that was bigger than me when I was little and all of the pictures are SO cute. Can I help it that I want her to have that too?

We need to get her 8 month pictures done and I think the Bunny might be part of them. Who knows though. ;) She is chattering up a storm also. Big Grandpa Mike taught her how to scream/yell while he has been on baby sitter duty the past week. (Thanks Mike!) Though, I can tell you, it is really, really cute! She yells at the cat, the dogs, and her toys in this little grunting frustrated voice when she can't get to any of them.

So, right now we are a very happy family as far as the liver issues are concerned. There is other drama, but I am sure it will work out in the end as well. I'll try to post some updated pictures of her later tonight.

Thursday, February 5, 2009

Joy and Pain

The joy for today is that Ember will be getting her broviac removed tomorrow morning! She will finally be able to take a real bath! She will get to wear t-shirts without a onsie underneath to keep the hands off the broviac. Hopefully she will even start to try to crawl or scoot once it is gone.

The pain for today is the loss of yet another liver kid. Faith was waiting for her transplant when she became too ill to receive it. Unfortunately, she lost her fight February 3rd. I can't even imagine what her parents are going through right now.

So, for me, today is mixed with the joy that my baby is progressing and the sadness that another liver kiddo is gone. We will keep Faith's parents and family in our thoughts. We understand that this is, unfortunately, the nature of liver disease, but that doesn't make it any less painful. We will remember you always Faith. May the angels wrap you in their warm embrace.

Thursday, January 29, 2009

Trivia Night

It has been awhile since I posted! Sorry about that. It has been a little busy around here. First off, I would like to say THANK YOU to anyone and everyone who donated to the Trivia Night. It was a resounding success. We are so VERY grateful for every one's love and generosity. We raised around $9,000!!!!! This includes all the donations made, Entry Fee, Raffle Ticket Sales, and 50/50. The 50/50 money was actually donated back to Ember from my Aunt. She put Ember's name on her ticket. It was so overwhelming!!!! I do not have pictures of the Trivia Night yet. Unfortunately, I was so busy that night I did not get to take pictures myself. As soon as I have some, I will post them though.

Ember was there for a little while to say hi to everyone and thank you. She was then whisked away by Grandpa Big Mike so she could get some rest. She was still technically in isolation at that point so she couldn't have stayed anyway. I also want to give a big thanks to the Emcee's for the night. The News 4 This Morning anchors and weatherman came down to help host the night. It was incredible. They did SUCH a good job! We couldn't have asked for a better night.

Thank you again to everyone who donated items, time, and money to help our beautiful baby girl. We can't say it enough, we are truly grateful and blessed.

Friday, January 9, 2009

Christmas and other things

Christmas was a very good one this year. I am still amazed at how something so small could hold my heart in the palm of her hand. Let me tell you that Christmas would have been special without BA and a transplant. The reason being is simply that she is here. We tried for three years to get pregnant and in August of 2007 we were at a point in our lives where it was a last chance effort or we would probably have to hold off for awhile. For whatever reason, the problem was with me and I was placed on fertility drugs (some dr's say I am fat and that is why, others say it is my PCOS...who knows). In August of 2007 I was on the highest dose they could safely give me before we started to talk about other procedures. While we are comfortable in our home and the way we live, we were in no way prepared to spend thousands of dollars for other procedures. So, in September 2007 when we found out we were pregnant we were overjoyed! The following months were not as bad as some pregnant women have it. Yes, I did get labeled as a high risk pregnancy because of my weight, but also due to my gestational diabetes. In May 2008 when Ember was born, it was the best day of my life. To finally have her here was great!!!! So, you can see why Christmas this year was special due to just having her with us. Her liver transplant made it just that much more special.

She did receive WAY too many items, but I am finding that this is true with most first Christmases. Though, I must say that most of the items she received will last her, with the exception of clothes, for a long time. Almost all of her toys are labeled up to 36 months. We tried to get her a lot of developmental toys as well since she is considered to be slightly behind right now. Mostly that is because of the time she has spent in the hospital. Two major surgeries in the span of 3 months would do that to anyone I would think. She enjoyed Christmas morning mostly. There are some pictures below that show her with Santa a few days before Christmas, then sleeping on Christmas eve, and then opening presents on Christmas.

Tomorrow we are hosting a Trivia Night in order to help with her medical costs associated with her transplant. I want to thank everyone who has donated to the event. We couldn't have done it without you. I also want to tell everyone about The Dreamland Chronicles. This is a web comic that I read regularly and I contacted Scott asking if he would be willing to donate something for the raffle. He sent us a great box of books and toys that I am sure are going to be a hit. The reason I wanted to point him out to everyone is because this is my way to help him out as well. He makes his living through the web comic. So, please stop by and check it out. He is very talented so it is worth your while. He also linked Ember's site. It amazes me that by contacting one person I didn't know, we received such a nice donation and he is sharing Ember's story. While I do not know Scott personally, I can honestly say that I wish I did. He seems like a great guy, especially because of his generosity. There is a whole list of others that I would like to thanks also. My family (Mom, dad, pop, fran, judie, mike, meaghan, our ants, uncles etc..). Our friends (Donna, Jan, conrad, peggy, joe, erica, etc...) I will post a larger list later! I have rambled long enough.

Once more thing to note...Our friends Tonya and Pete welcomed their new bundle of joy into the world on Wednesday. I couldn't be happier for them. No one deserves to be parents more than they did. Welcome to mommy and daddy hood guys! It's the best! Matt and I are here if you need us!