a letter to Aiden

My dearest Aiden,

I have loved you since the second you were born. I’m so sorry that you had to leave this earth so soon. I will always love you. I will never forget you, I can promise you that.  You have changed my life forever. Even though you were only here for a short period of time, you have touched more lives in one month than most people can in a lifetime. There is so much love for you, even from complete strangers. People looked forward to hearing how you were doing. People from all over the world were praying for you. You have been such an inspiration.  Through you we know that miracles do happen. You are such a strong little boy. You had so much fight in you it was unbelievable.  I am so sorry you had to go through that. No baby should ever have to endure what you went through. But you never gave up. You have taught me to never give up and never lose hope.

I only got to hold you for a short time but in that time, you and me bonded more than any mother and child ever could in a lifetime. I was so honored to give you your first and last bath. It is a memory that I will hold with me forever. You took your last breathes and died in my arms as I snuggled you as close to me as I possibly could. You held onto my finger with your little hand and you squeezed it so tightly.

I never got to rock you sleep, dress you up in cute little outfits or feed you a bottle.  I never even got to see your gorgeous blue eyes or hear you cry.  You have never seen my face but I know that you knew my voice. I never got to sing you a song or read you a book. I wish that I could of seen you kick your legs.

Every time I walk in your room I picture myself putting you to sleep in your crib. Or you cooing to your light projector. I picture you crying and me picking you up and soothing you. When I’m in your room I picture what life could have been like with you here.

I will make sure that Savannah and Sierra  will never forget who you are.  You have been a part of their lives since the day I found out I was pregnant with you. Matter of fact, Sierra was the first person to know that I was pregnant. Your sisters were so excited that they were going to be big sisters. They gave you a hug and a kiss every night while you were in my belly. Even though they never met you, they love you so much.

I’m sorry that you had to be born sick.  I never wanted this for you. I wish that I could of traded places with you. We knew that you were sick before we had you but that didn’t change the fact that we loved you and we wanted to give you life. I know that you were put on this earth for a reason. Now you are an angel looking down on us. I love you and I will see you again one day.

                                                                                           Love Always,

                                                                                              Mommy

Funeral Arrangements

Edmonds&Evans Funeral Home 6941 central Ave Portage IN Friday July 20 Visitation 11-1 pm Service 1 pm Please wear blue pink or yellow. These are the CDH awareness colors.

Rest in peace my sweet little boy

Aiden earned his wings today and now he can rest peacefully in heaven. Saying goodbye to a child is the most heart wrenching thing anyone could go through. He fought so hard but now we know he is no longer suffering. He is an angel now and will be looking after his sisters from afar. I want to thank everyone that has been following Aidens story. This little guy has touched more peoples lives in one month than some people do in a lifetime. Thank you for all your prayers. Funeral arrangements will be posted soon. RIP Aiden Robert Grant 06/13/12-07/14/12

Not a good day

Aidens oxygen levels are dropping. He is at his max dose of all his bp meds. His kidneys aren't working. They keep giving him volume for his bp but if he doesn't start to pee he will swell up and his oxygen will drop even further. We need a miracle right now. Everyone please pray for aiden right now. He needs everyone to pray for him. He has come to far to not make it. He has been so strong but his body needs to work harder to overcome this. The doctors said they can't do anything else for him so now it's in Gods hands!!!

In the next few days

Either Thursday or Friday will be the very last attempt to get aiden off ECMO. More then ever before Aiden needs your prayers. We are not ready to say goodbye to him. He has come so far and he has been such a fighter but we are scared to death of losing our one and only baby boy. This journey has been by far the hardest thing we have ever gone through and we are so thankful to have everyone's support. Please pray that the doctors are guided in the right direction and he is able to come off. That his heart is strong and that he can overcome his pulmonary hypertension. That his kidneys start working and that his blood gases and vitals are right where they need to be. Thank you all for your support!!!

The past few days

Aidens blood pressure has been all over the place. Either it is high or low and they haven't found a happy medium yet. They are constantly playing with his bp meds and blood products to keep his bp steady. They thought he was maybe bleeding internally somewhere with his bp acting like that so they did ultrasounds of his abdomen and head and those came back ok. They also thought it could be infection so they have him on vanco. All his cultures have came back neg. Aiden has a patent ductus arteriosus (a shunt in the heart that is suppose to close after birth didn't close) so he had been shunting a lot the past two days. Oxygen rich blood mixes with Oxygen poor blood putting a strain on the heart and increases pressure in the lungs. it also decreases oxygenation to the extremities. He is still bleeding from his chest tube and his urine. They did a echo on mon and they will repeat it right before they try to wean him off ECMO to see if his pulmonary hypertension had gotten any better. The goals for the next couple of days are to come down on the bp meds, get fluid off if they can and to keep his bp steady. Do keep those prayers coming. Thank you!!!

This is where we stand

Yesterday they tried taking Aiden off ECMO because all the bleeding. He only was able to tolerate it for about an hour and a half before his heart got too tired. They realized then and there how serious his pulmonary hypertension is. They tried giving him factor 7 for the bleeding. It slowed it down but it didn't stop. They said if they can get the bleeding to stop they can give him another week or two on ECMO to see if his pulmonary hypertension gets better. They said it may or may not get better. It usually gets better within a few weeks but in his case it didn't. However if they can't get the bleeding to stop he cannot stay on ECMO. So please please please pray that they can stop the bleeding and that his pulmonary hypertension gets better so when they try to get him off ECMO again he can tolerate it!!! Thank you so much

Failed attempt

Aiden had his surgery on 50% ECMO. After surgery his blood gas came back really good. So they decided to clamp off ECMO because they were hopeful that he would have better ventilation once all the packing was gone and they thought that would get him off ECMO even if it was only long enough for him to clot from the surgery. 20 minutes after they clamped off they did another blood gas and that one came back bad. So now he is on 100% again. Now the problem is he is bleeding again. Not as bad as before but now he receiving blood products. The doctors are having a hard time getting his extra fluids off so having to give him blood and another med to stop the bleeding is discouraging.So the plan is to get as much fluid off as possible and try taking him off ECMO again. Maybe the third time will be a charm!!!