Thanksgiving

Our little family

 Today, we have a lot to be thankful for. I thankful for my family, both my immediate family and extended family. They mean the world to me. I am so thankful to have such caring and supportive people in my life. I am also thankful that my grandma will be coming home from the nursing home tomorrow. We have been worried about her being there. So, we are very grateful that she will be able to go to her own home tomorrow. She will be much more comfortable there. And, I know I have not mentioned it on here, but she fell and hurt herself recently and has been unable to walk. So, I am also thankful that she is able to have a caregiver come to her house instead of being stuck in a nursing home.

I am also thankful for a job that gives me such flexibility so that I do not have to work holidays, and I can make my own hours. I have worked jobs, in the past, where I had to work holidays. I usually got stuck with Thanksgiving, Christmas eve and 4th of July. Now, I make my own hours and can decide when I work, as long as I see my clients in a reasonable time period. This also means, I am able to take time off for Ben's different appointments and for the girls school functions and things like that. I am also thankful that Joe has a job that allows me to work at a job that I love so much. This is truly my dream job and I am so fortunate to finally be able to do the job that I love so much. However, due to budget cuts in Illinois, as well as the  fact that we can not have Ben in daycare yet, I would not be able to do this if it weren't for Joe's job.

But mostly, I am so very very thankful that in their time of grief, someone chose to be a hero and donate their loved one's organs. We are able to see our little guy grow up. We get to see him crawling around, and walking with a walking toy, playing with his sisters, babbling at us, and generally getting in to mischief the way any normal 1 year old would. When I think back to that day in December that Ben was diagnosed, we didn't know if he would make it day to day. I never allowed myself to think about him turning 1 because I didn't know if it would happen. I cried one day when we were in the hospital, because I saw a little baby, about 6 or 7 mths old and I was terrified that Ben would never be able to see that age. But now, here we are, he is 1 year old and thriving and doing so amazingly well! This Thanksgiving we are much much more thankful for all we have in our live than we ever have been. Knowing how fragile life is, just makes us appreciate it even more. 

Someone's started walking

look who's walking! from Stacy Hillenburg on Vimeo.

Ben is One!

Birthday boy!

Tired baby! 

Ben had his birthday party on Saturday. We all had a great time. It was a little difficult getting everything set up with three kids underfoot. Abby and Klara were pretty well behaved for the first 20 or so minutes we were setting up, but then they started running around in circles. Ben was just exhausted. He had about an hour long nap in the car on the way to the restaurant. We had the party at Basils Greek Dining. Then didn't nap again at all the rest of the day, except for a 20 min car nap on the way home. So, he was very overtired! But, all in all, it was a great party! We were happy that so many of our friends were able to attend. We were also saddened that a couple of friends could not attend. Two were because of illness, and one was due to a scheduling conflict. We very much appreciated the fact that, if people were sick, they stayed home. Most of the time, people would be annoyed by a last minute cancellation. In this case, we were very happy that people care enough about our little guy to reschedule with us. We knew there would be a ton of people there, so the risk of infection was higher than we are normally used to. So, anything we could do to minimize that risk was great! It's so crazy. I mean, with the girls parties, we didn't really care if people had minor colds or sore throats. Well, except for Klara's party. My dad had just started chemo, so we didn't want anyone who was obviously sick. But, we also didn't turn anyone away really. But, now, we have to be so hyper aware of anyone who is sick. Even just a minor cold is a major illness for Ben. I never thought we would be worrying about these things at his 1 year old birthday party. But, that is exactly what we do.

Cute hat! 

Ben actually turned 1 yesterday, on 11/12/12. We didn't do much for the day. We had to do a little shopping. Ben was at first, asleep sitting up in the cart. Then he chose to lay down and chew on his biter biscuit. He was exhausted from the long weekend. We had his party Saturday and spend the weekend at his nana's house visiting his grandma, grandpa and cousins. So, Monday, we kept it relaxing so he could catch up on some much needed sleep. And so could I! We went to Trader Joe's for some groceries and spent the rest of the day at home. Today, he has still been pretty tired. He was yelling at me when we went to meijer. He perked up when I put this hat on him. I think he really likes it. I may have to go back and get it :) Tomorrow, Ben will be coming with us, and the girls will be staying with my sister. We are going to the Mended Little Hearts meeting, where Bill Coon, author of Swim: A Memoir of Survival, will be speaking. Coon was one of the first four infant heart transplant recipients in the Midwest. He then went on to have a second heart transplant, as well as a kidney transplant at the age of 21. It is amazing and makes me so hopeful that his first donor heart lasted so long. And he was one of the first! So, the technology was still really in it's infancy! I can't wait to hear him speak! I am hoping to have him sign Ben's birthday book as well. I am really excited to be going, and will update about it either tomorrow or Thursday!

Almost 1 year old!

We had Ben's 1 year appt on Tuesday. He had a great appointment! The dr said he was almost caught up with his development. He is pretty near caught up physically and he just has a few minor things that he needs to work on with fine motor development. Physically, he is looking great! He has apparently gone through a growth spurt recently. He was 30 1/4 inches long and 20 lbs 1 oz. He is only in the 25th % for weight, but the 75th for height! She is not worried at all since babies tend to lose weight between 12-15 mths from being so mobile. He has finally broken the 20 lb mark! The dr said that we can feel free to switch to whole milk, or keep nursing, or any combination of the 2 if we would like. I am going to try to keep nursing him as long as he wants to. I feel like it may have helped him stay fairly healthy, even with being immunosuppressed. I'll probably try to give him some whole milk as well, just to get him used to it. But, we also have a ton of breastmilk in the deep freezer to get through. He also got 2 shots at that appointment. He handled them like a champ. Screamed for about 2 minutes and then it was over. He will be getting 2 shots at each appt from now on and should be caught up by the time he is 18 mths old

His physical therapist said that she is confident he won't have any trouble walking and that he is getting so close. She doesn't want to discharge him just yet though. The reason for this is, if he were to need orthotics (which apparently can be common with kids who have had long hospitalizations) we would have more trouble getting them if he was already discharged. She doesn't think it will be an issue. She thinks he looks like he has great posture and that his feet look good.

All in all, it was a great appointment! We also have his NICU follow up appointment on Nov 26. this is where they follow his development until he is about 5 years old. They do this with all kids who were in the NICU or PICU as infants. Studies have shown that when kids are hospitalized for long periods and especially sedated or paralyzed, that can affect their development. So, the NICU follow up is to make sure his development is on track and, if it's not, to recommend services. So far, he has only been slightly delayed in speech and, obviously delayed physically. I am eager to see what they think of him at this appointment since he has made such great strides!

I am thankful

Ben's first Halloween and Klara's 4th birthday!

It is Nov 1st. So, that means I have been seeing an abundance of "I am thankful for..." posts on Facebook. I know that we have so much to be thankful for, but I am not the type of person that likes to list them all out in multiple facebook posts each and every day. So, I thought I would just talk about it all in one post on here.

First, I am thankful that we have a roof over our heads, enough food to eat, great jobs and a way to get to those jobs and the awesome insurance Joe's job provides. So many do not have that right now, due to Hurricane Sandy :(

Also, I am thankful for my husband, Joe. I don't know what I would have done if I had to do everything on my own. When we were at Kohl's house, we met one woman who was a single mom and had her own medical issues and was facing her child having to undergo multiple surgeries in Chicago, while her other kids were back in Arizona. I can not imagine doing that all on my own.  Joe was very good with keeping me from falling to pieces. I was, understandable, very emotional at that point. I mean, come on, I was 1 mth post partum and my child was in critical condition. I think anyone would be feeling the same. But, he was able to let me cry and have my anxiety riddled moments and then help me calm down and move forward with things. I think had I been alone, I would have had a major breakdown. So, I am very grateful for Joe being there and being such a great husband.

And speaking of Kohl's house, I am very thankful that there is such a place, so that families don't have to make the decision of "do we rent a hotel, or do we leave our baby here until they are better?" They just request a donation of $10 a night. But, even families who can not afford that are not turned away. I also am grateful for friends we made at Kohl's house who are on the same or similar paths as we are. Not because I want anyone else to go through transplant, but because it helps to have friends to commiserate with that have been where you are.

I am also thankful for my kids. I am thankful that, for the most part, Abby and Klara are very healthy and they are definitely very smart and beautiful. I am also thankful that Ben has come through his transplant and has had no major issues such as rejection or major infections. Sure we have had a couple of respiratory viruses and a GI bug, but while they were scary, they were nothing major like some people, on different heart boards I am on, have to deal with. Yes, I have had the occasional complaint about, "OMG, why won't this child sleep? I need sleep!" But, I am grateful I get to complain about that and not that Ben is in the hospital still waiting for his gift of life, or worse that he didn't make it.

But, most importantly, I am thankful for Ben's donor family. I am thankful they made such a selfless decision in their time of grief. I am thankful that, because of his donor, I was able to see Ben celebrate his first Halloween yesterday. He was able to help Klara celebrate her 4th birthday yesterday. Because of his donor, we will be able to go travel to see my mom in Indiana next month. He will be able to go to his nana's house for Thanksgiving this year, and so many more things. So many people die waiting for their perfect organ to give them a second chance at life. We had to wait 3 weeks, and while we were waiting we thought it was taking forever! But, in the grand scheme of things, 3 weeks is really not that long.  Right now, I am looking down at his sleeping little body laying in my lap. It just boggles the mind that someone else's heart is in his body. Someone made the decision that they wanted their child to live on in my child. They did not want another baby to die, so they decided to donate their child's organs. The amount of gratitude I feel for Ben's second chance at life, well, it can't even be put in to words. Though, I am going to try. We plan on writing to Ben's donor family very soon. We want to include a picture from his first birthday in the letter so they can see how great he is doing and how thankful we are that he is able to celebrate his first birthday.

I am also thankful for the great friends and family we have. So many people supported us through what was the most difficult thing we have ever faced with one of our children.  Not only through such things as logistics like, "where will the girls sleep tonight? How will they get to school in the morning?" But also, through emotional support when things were getting tough as well as generous donations from friends I only know through my online community of mommies.  Even though I have only met a few of them, they all supported me and my family through a difficult time. For that we are also very grateful.

So, this is my thankful post. I am sure there are many more things I am thankful for. And maybe there will be another thankful post as it gets closer to Thanksgiving. But, I didn't want to forget anything, and well, I am not that great at remembering to do a thankful post every day. I am barely able to remember to get my girls lunches packed every night :) And, I would also like to take this time to remind everyone again that being an organ and tissue donor is one of the best things you can do. Please register to be an organ and tissue donor. You never know whose life you might save!

Donate life! Be an organ and tissue donor!