Aidan

We have had a lot of snow days in Ohio recently... today we are having some bitter cold weather. The kind that freezes your wet hair instantly. I know you are thinking "does she really go out with wet hair?!" The answer is yes but it is pulled up. I know my grandma used to yell at me all of the time and force me to dry my hair with the oldest blow dryer I had ever seen. I can even remember the kinda burnt hair smell it had. This weather also reminds me of the many adventures Aidan and I had in the cold snowy weather. Just because it was bad out did not mean we got a free pass from labs and appointments. Last year I bought an awesome type of bag that laid in his stroller or car seat (the forward facing) and then zipped up around him. That little "sleeping bag" made it easy for us to be mobile and stay warm. Aidan was not able to tell me when he was cold so I always made sure he had many layers on. Sometimes I would even stick him in a onesie, socks, and then put a fleece sleeper over him. To top it off I would slip his little robeeze over the footies and toss on his coat and hat before we went out. Aidan did not have to wear gloves because his coat arms pretty much went over them. He was a little puffball after all of that but I know he stayed warm until we got into the hospital. Then we would have to peel all of those layers off to get labs... that was always fun.

I really miss that little boy... no matter how much he fussed while getting dressed or how long it took me to get him ready.

3 years ago at 2:02 a.m. on December 27th I gave birth to a 4lb. 11 oz. ball of fight... 3 months ago at 11:25 p.m. on September 27th we lost that ball of fight. It is hard to believe that Aidan has been gone for 3 months... even harder for me to think about his 3rd birthday.

We had so many plans for Aidan. His 3rd birthday was going to be a big deal! He would have had his new kidney for over four months and we were going to have a big bowling party with everyone who loved him. There was going to be a bowling cake... pizza... and lots of laughs. Instead I am going to be sitting at home missing him. This is not what Shawn and I had planned. We were supposed to have Aidan forever. We were planning trips to Disney World, visiting family all over, and enjoying all of it.

Aidan changed our lives forever on the night he was born. Shawn and I went from being a care free couple who loved going out and having a good time to instant parents who were fighting fiercely for our son's life. There was not anything that we would not do for him. In the end everything we did was not enough. God was calling and Aidan was tired. There is not an hour that goes by that I do not think of Aidan. It has not gotten any easier and I do not expect it to.

I did not believe in love at first sight until I saw Aidan. I loved him before he was born but the minute I heard his little cry and saw his little squishy face it was major love! I remember crying when they said he peed and watching with fear as they cleaned him and told me that he was a very sick little boy. Two hours after Aidan arrived he went on his first ambulance ride to Children's. Shawn and I got about 15 minutes to say goodbye and to hold his little hands and feet through the isolette. What a scary and blessed night that was...

So sorry this entry is all over the place. I have so many things I want to get out but I just do not have the brain organization to do it! I hope everyone had a great Christmas and everyone has a safe and happy New Year!

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even though Shawn and I have not decorated or even bought a tree yet! We are such slackers this year. We are going to the Zoo this weekend with my sister and friends to enjoy the lights! I guess we are not really in the mood yet to celebrate the crazy decorating part of Christmas... :)

We are carrying on Aidan's memory this year with a new ornament. I will be doing an ornament for Aidan every year. My sister loved this idea and is now doing it for her living children. I know I will be doing it for Shawn and I's other kids if and when we do have more.

One thing I do want to tell everyone... If you are in the Massapequa Area tomorrow night there is an awesome benefit going on! It is for the benefit of www.prunebelly.org. We love this organization and all of the support we received from them. Frank Walker is heading this up... he is one of Aidan's Prune Belly Brothers. They are dedicating the night to Aidan, another PBS brother who passed Conner Jones, George Harrison, and John Lennon. You can visit http://massapequa.patch.com/listings/the-irish-cottage to get more details. I know it is going to be a fun night!

So I have decided to keep Aidan's blog going even though Aidan is no longer with us. I am going to use it in my healing/grieving process. I know that I will grieve for Aidan until the day I am with him again. I also realized it does not get easier. My heart will always ache for the loss of my little A-Bomb. You just learn how to cope and get on with your day. So today I am going to start by writing a letter to Aidan....

Dear Aidan,

Hey Little Big Man! Mommy and Daddy miss you so much. I know you have been watching us from your little cloud in Heaven and I hope you and Mamaw Rose are having a great time!

Things have been so different without you around. I have had to learn how to not get up every night to check on you. Also when driving I have to stop checking the backseat to see how you are doing. I miss you so much. I miss giving you cuddles and kisses even though you always fought me on them. Your Buddy even misses you! He has even tried to steal some of your toys for his own.

Your Aunt Heather is going to have a little girl! I sometimes sit and imagine how you and Grant would pick on her and then protect her when someone else tried to pick on her. I really hope that your cousin Grant is able to remember you as he gets older. He really loves you and even asked me the other day to name my next kid Aidan. I laughed at him and told him that your name belongs to you.

Well I think I will let you go for now... give your Mamaw Rose a big hug from me.

I love you!!!

-Mommy


Shawn and I have been doing all right. We both have our days. Shawn is back at work and I have been trying to keep busy during the day. It has really been a shock to go from taking care of Aidan 24 hours a day to not having anyone to take care of. Shawn and I have decided to take care of ourselves for the next year. We went on a short day trip to Niagara Falls. It was a lot of fun but odd to not have Aidan with us.

I would like to thank everyone for their prayers and support. Aidan's Memorial was beautiful. I would like to specifically thank Discovery Church in Gahanna, Ohio for allowing us to host his memorial there.

So it has been a little over a week since we lost our sweet little Aidan. A lot of tears have been shed as well as laughter. Yes, I said laughter. Shawn and I can't help but laugh at some memories of Aidan. Like how much he loved his doggy Buddy. How he would wake up in a good mood almost every morning.

Shawn and I even went to dinner with friends this past weekend. My sister, my brother-in-law and nephew came up this weekend. It was nice to hang out with my sister and help her pick out maternity clothes. Also my nephew is still a cuddle bug with me at 5 years old. He even made me laugh this weekend.

We finalized when and where Aidan's Memorial is going to be. We want this to be a celebration of Aidan's life. I know we will have tears but I want there to be smiles also.

For those of you who want to come...

October 9, 2010 @ 2:30 p.m.
Discovery Church
750 Cross Pointe Suite L
Gahanna, Ohio

Shawn and I thank everyone for the prayers...

Shawn and I had to make the hardest decision of our lives yesterday. Everything up to yesterday seemed so easy. We always did what was best for Aidan and what we could do to make his life better. When the doctors offered an option we always said immediately "yes!" We never questioned what the doctors wanted to do to help keep Aidan alive.

It all started on Saturday when Aidan's condition started getting worse... the doctors tried to put in a hemodialysis catheter and that did not work. They then found it was in the wrong place completely. The main problem was they did not know where it was. The only way to see was for a CT scan which was impossible. The doctors did some very heroic things to try to save Aidan. He had a chest tube put in on Sunday night which caused him to start to code. After that incident Shawn and I took our tired bodies to the parent sleeping room to wait for the docs to call us about the chest CT. At about 5:30 a.m. they were ready to bring him down to the CT. It took 4 nurses, 3 respiratory techs, and 2 doctors to get him down there safely. The CT took awhile because Aidan had so much attached to him. I should have taken a photo of it but did not have the heart to.

After Aidan came back up from the CT the nurses and docs let him rest. Then he coded... nothing was going on and he was not being messed with. It took them a few minutes to get Aidan back but that was one of the hardest things I have ever watched. After that the doctors said we have some decisions to make. They brought in some cardio-thoracic surgeons to talk to us about the catheter in Aidan's neck. The catheter they had placed was very close to the main arteries in Aidan's neck and that removing it surgically or even pulling it out would mean death. We were told that there was nothing more that could be done for Aidan. His new kidney wasn't working, the peritoneal dialysis had quit, the hemodialysis wouldn't work and that him coding that morning was a sign that he was ready to go.

Shawn and I made the decision to set Aidan free. Free of wires, probes, catheters, medicines, and pain. See Aidan had not known a life without these things. He was never really without these things in his life. He was a fighter from the beginning. And by beginning I mean from the time he was conceived. Shawn and I knew he was a fighter at our 20 week ultrasound and knew he was going to be a special baby. We knew we had a long road ahead of us. Aidan went through several surgeries and procedures in his short life. He had a cardiac arrest and dialysis every night.

Shawn and I called our family and friends to let them know our decision. Aidan was exhausted and God was calling him home. Shawn and I cried a lot and held onto each other. The doctors were so very patient with us and so caring. Aidan's nurses yesterday were amazing. Aidan's nephrologists came in to say goodbye as well as his dialysis nurse Beth. Beth has been with us since we found out Aidan would need dialysis. She has been my go to woman with questions and a shoulder to cry on. Aidan loved his Beth and she was so caring with him.

Aidan's final hours were peaceful ones with lots of goodbyes and tears. I got to lay with Aidan for a few hours napping off and on with him touching him the whole time. It was so peaceful and sad. Shawn and I read him books and talked about all of the fun we had going to football games, baseball games, and the beach. We told him how much we loved him and how much everyone else did. I told him how strong he was and how much I wanted him to be happy. Shawn told him what a perfect son he was an how we would tell his future siblings how amazing and strong he was. I told him how we knew he was tired and he did not have to fight anymore. I did not move from my spot next to Aidan until he was gone. He passed around 11:25 p.m. on September 27th. Shawn and I felt the moment he left. We knew even before the doctor came in. He was 33 months old.

Shawn and I are heartbroken. We kept thinking how this wasn't the way it was supposed to be. But we had Aidan on borrowed time. God needed him more than us. He was send to us for a reason and he made our lives so much more fulfilling. Aidan made us smile, cry, and laugh.

I will post more on memorial details as I plan them. Thank you for all of your prayers.

So the dialysis catheter did not work at all... The did some x-rays to see where is was and it was in the wrong spot. I do not like to point fingers but the doctor this morning said he used a wire to put it in and the old I-J line was in the right spot. I am not sure how and the docs "don't know" how it got so out of place. It punctured his vein and is now sticking in one of Aidan's arteries. They can not remove it because if they do he will bleed out. The artery is in his chest cavity. They can only remove it through surgery which will more than likely kill Aidan at this point.

So we were given a few options and none were that great... We are going to try to put a new catheter into Aidan's leg to see if we can not run CVVH through that. If not we are not sure what we will do.

Shawn, Aidan, and I need a lot of prayers right now... as well as his doctors and nurses.

Aidan's peritoneal dialysis catheter has stopped working. Yes it was only a temporary one but nothing will come out of it. So the docs this morning said we are running out of options to save Aidan. We are going to try a type of dialysis called CVVP. We have tried it once today and so far it is not working right. They are going to try to switch out the catheter. We are praying that it works and that Aidan does well with it. It is a very risky dialysis but one of our last options...

I will try to update again today..

Aidan is not doing well. I wish I could sugar coat this somehow but I can't. The past week Aidan started to retain lots of fluids and then on Friday he took a turn for the worse. The ventilator he was on was set to max settings and 100% oxygen and they could not keep his blood oxygen above 88%. It would drop dramatically and he would have to be bagged. On Saturday morning Shawn and I got the call that we needed to come in immediately and that Aidan was on a minute to minute status. Meaning that at any time he could leave us. I was on my way to a photography session and Shawn was still at home. We both headed in right away. When I got here they were putting more lines into Aidan. He had so many medicines that the PICC line was not enough. He was getting things to keep up his blood pressure and medicines to keep him pretty much alive. He was so big. The puffiest I have ever seen him. He was struggling to breath and they had him sedated so he would not fight the vent.

I was in shock... I had cried the whole way to the hospital but had to stay strong for Aidan. Also strong so I could hear what the doctors were telling Shawn and I.

They had to switch Aidan to a special vent called an Oscillating Vent that shakes the air in his lungs. It has helped a little but Aidan is still really bad. We had to restart dialysis yesterday because he had not urinated in a day and the fluids on him were doing more harm than good.

I have been staying the night here while Shawn goes home to take care of the dog and get some sleep himself.

I will try to update more as we get more info but the docs say Aidan is in a hard place right now and could go either way.

Thank you for your prayers!

or at least I think it is. Shawn has been out of the hospital since Sunday night. I am so thankful to have him home and for his support. I never realized how much I really do rely on him. I knew we were always there for each other I just did not know how hard it is without him around. Do not get me wrong he was still there for support while in the hospital it was just that he was so sick he needed my support more. I do know that the dogs were awfully happy to see him. Buddy, the dachshund, has not left him alone since he got back. Shawn is still having a few issues but is slowly recovering.

Aidan is starting to look better too! I am so proud of my little fighter. They are trying to wean him off of the vent. They are doing it very slowly and he seems to be tolerating it. We are praying that he is able to come off of it. The doctors are no longer draining fluid from his belly and this kidney is starting to work beautifully. Aidan's incision is healing well too. I am so thankful for the little things... Aidan waking up when I talk to him, he is starting to move more (well as much as Aidan can move), starting to yawn and coughing a lot.

We are finally moving this weekend into a new apartment and we have some great friends who are helping us. Shawn is still not able to lift a lot. Thankfully we do not have a lot to move because we have started to slim down what we keep.

Shawn and I are most thankful for all of the prayers and offers for help. I know in my last post I said I was stubborn and I still am but I have started to listen to people and slow down.